Introducing William Michael

Summer Time...

2011-07-15T15:31:00.003-04:00

And the living has been relatively easy. We took Liam on our first family vacation to Sebago Lake, ME, over the July 4th holiday. Alex spent his summers there where his Grandma had a house. Its really beautiful, peaceful and undeveloped, which meant a true escape. And the house we rented had a helipad nearby so God forbid we needed it, we had it. I know, what a way to think on vacation but driving 6 hours north east away from life is scary too!

Two days before we left, Liam decided to take his first steps unassisted! Huge news. Our therapists think by the end of this month, he will be doing this more often, standing for 10-15 seconds at a time, take 2-3 steps, versus crawling full time. He cruises on everything, climbs, jumps, falls..without fear, so if he could start the steps soon, it would be pretty amazing. We recently started speech therapy and are already seeing little changes. He always has been a talker but he is making decisions, picking up the right flash card when asking for the dog for example, and trying to repeat everything we say- no more trucker Mom. I need to clean it up.

We have a CHOP day coming up in August with his immunology team. Its my hope that the bloodwork from this visit has improved since the last. We want to enroll Liam in a two mornings a week class and need the ok for him to be around the other kids. This class is unique- its called Stepping Stones and Liam and I made some good friends at a once a week playgroup it runs for kids his age with Down Syndrome. The two year old class meets for 2 hours twice a week where Liam will be receiving four extra hours a week of therapy, learn how to act in a classroom setting, and become more independent. During the class, unlike the group we were attending, I can't be there- that will be the hardest part! But there is a parent support group that meets at the same time which will be good for me too. Its a great way to learn from other wonderful parents and make friends.

Because his immune system is so low, we need to first ask the school if any other kids haven't had vaccines. If they haven't been updated, we either need to give Liam more meds to protect him or say no, which would frankly suck. We have to depend on the general public to protect our son and with the Jenny McCarthy followers (seriously, this is your Dr. Spock?), our son has a higher risk of being exposed to something that could be fatal for him. If his bloodwork looks good, maybe we can even start getting vaccinated. While its scary because its a risk, it would be a relief too.

Other than that, we are enjoying the cooler days (too hot\humid is on the no-no list because of the heart), yesterday we walked to the post office and ran a few errands rather than drive, which was great for me. Lots of time at the playground, baby pool, gardening. All with lots and lots of 100 SPF on for the two pasty white blonde kids we are :o)

Fly High Seth

2011-05-31T16:56:00.001-04:00

One of the families I have followed online has been Seth's. He sadly lost his fight last week. Seth had the same diagnosis as Liam. His parents just posted this video they shared at his funeral. Please say a prayer for his family and Seth.

http://www.youtube.com/watch?v=OTs-I3gYujU

CHOP Cardiac Appointments

2011-05-28T20:27:00.003-04:00

Pics Above: Liam happy to be in his big boy chair, 18 month pediatric appointment results- 32.5 inches, 50%, 26 lbs 12 oz, 75%. Typical chart.
Liam with JP and Reilly- two of his CHOP friends, survivors and miracles. Reilly was recently removed from the heart transplant list because her heart has begun to heal itself. We were there to celebrate JP's 2nd birthday!

Its been awhile since we've had medical updates but this past Wednesday, the three of us headed down to CHOP for a day full of cardiac tests and doctor visits. I have been nervous about this for a while- it was a big test, if he looked good, we would have a year between visits and we would be given an outlook on future surgeries. The word is possibly 20 years or more down the line. If the heart didn't look so good, we'd be visiting more often and discussing treatment (ie open heart surgery) plans.

I was also nervous because Liam is feisty- seriously, that NICU doctor who described our future as having a docile and nonspeaking son can babysit for a few hours and enjoy choking on his words as he stops the Troublemaker from bringing down the place. Anyway, having a baby lay down through an echo was hard but a kid who only wants to crawl, cruise, move constantly during his naptime...sigh.

Remarkably, his biggest fuss was when getting his blood pressure taken. He actually sat still for the doctor who examined him, did well for the EKG and then off to a 50 minute echo where he had to lay on his back and not move. Let me tell you, I was a dancing monkey. Alex restrained him because Liam was mostly fascinated by the equipment and wanted to give himself the echo. I danced, I signed songs, I sang, I blew bubbles. That poor technician. Oy.

After all the testing, we headed back to see the doctor. The first words out of her mouth- "Well...Liam's right ventricle is definitely enlarged." Right about there, my stomach dropped and it took everything inside of me to look her in the eyes without crying. But I also remembered the pressures of a tet heart cause the ventricle to be enlarged and some kids hold up well with this. She then spoke again and I was able to breathe. She told us it is a concern but not one for now, or even in the next year. Most tet kids have this and live for a few years before going into heart failure. Liam is healthy enough that he doesn't need to be seen for a year, which is positive. She wasn't going to worry and we were a few years at least from beginning the process of next steps. We are not looking at the 20 year outlook though, much closer to 10 if his heart stayed within this range.

Because he was squirmy, the technician didn't get the best pressure readings and pictures so when he gets closer to 3 or 4, she is going to begin MRIs. He will need to go under general anesthesia for this, which we don't like but it does mean she will get the best picture possible of his heart which we need. At the earliest, he will hopefully be at least 10 or so before his next surgery. It would entail replacing his pulmonary valve, which right now is typically done with animal tissue versus human tissue, which he received through organ donation last year.

The good news for us is by this time, the odds are in our favor of Liam NOT needing an open heart surgery and instead, being able to replace the valve with a cardiac catherization. Europe is doing it, some hospitals in the US are experimenting with it now, Johns Hopkins Children's has had success. While still a dangerous procedure, he would not need bypass time, no invasive surgery, breaking the ribs, etc. It would be a vein insertion in the groin and the repair would go on the end of a stent. Liam had this procedure last year when they couldn't get a good picture of what was happening in his heart and it was discovered his patch had dehisced. We know he can handle this procedure, he did at his very sickest already. Hey Bill Clinton did it, Liam's got this. It gives us hope that even though he will need another surgery, modern medicine can make it a much easier process next time. How lucky we are that he is born now- its likely he wouldn't have survived ten years ago.

Here is a great article on how another kid had this, and was at this hs graduation within 48 hours-
http://www.hopkinschildrens.org/a-less-invasive-pulmonary-valve-repair.aspx

Sometimes I read this back and think to myself- when did I become this calm and positive outlook person? How can I be calm when speaking about my son's heart being taken out of his chest and repaired, yet again? I have no idea how this happened but it has. And it is what it is. What a different life than we imagined when we first got pregnant and discussed Senator Kuhns future. Hey who knows? Maybe there will be a district who is able to recognize how amazing a kid like Liam is and what they can learn from him.

More Pics from DC

2011-05-14T12:20:00.001-04:00

Haven't had our computer at home but Alex is home for the weekend so here are some more favorite shots from our trip!

Visiting DC

2011-04-21T08:21:00.004-04:00

Alex, Liam and I spent a lovely 6 hour car drive last Friday down to DC (thanks random bear on the NJ Turnpike) and will be here for a few weeks as Alex goes to class for work. Liam and I are spending our days visiting friends and seeing old favorites of mine. Over the weekend, we hit up Eastern Market where we bought some fruit, walked to the Capital and then down to the Mall. We took a ride on the carousel and looked at planes. Well, Alex and I did, by then, Liam passed out. However, he still had some astronaut ice cream when we got back to the hotel.

We are staying in Old Town, where our wedding guests stayed, so the memories have been nice. We are walking down King Street every day, just getting fresh air, checking out everyone. Since we've been here, Liam has been sleeping very long nights, which has been nice for us! We all are fighting allergies but so far, a little Claritin and Dayquil have done the job.

I was able to speak with CHOP yesterday about Liam's latest lab work. They tested his blood against a control in three situations to see how his immune system did. In January, it functioned at 55% level. This time...wow. The first test, 85%! Second, 90% and the third....100%. His IGG levels have also increased, from 491 to 719. Anything over 450 is normal so we are officially at a stable level for his IGG. The not so great but not unexpected news is that his t-cells, which fights and kills viruses, and also teaches other cells to do the same, decreased slightly. We are at 481 overall when a normal immune system is up around 1200. Within the t-cells, his cd4 dropped to 275. The goal is at least 700. So while his immune system is doing great with what he has, he still doesn't have much. We are going to stay on Bactrim and still hold off on vaccines. The immune team is very encouraged that his system functions normally despite the low number of cells. So when he has recovered and his system has gotten to the normal level of t-cells, he is going to be one seriously healthy kid!

That's all for now, happy spring and soon, happy Easter!

Superboy!

2011-04-10T09:05:00.002-04:00

On Tuesday, Liam and I spent a long rainy day at CHOP. We finally got off the wait list for their Trisomy 21 Clinic after over a year wait! Unfortunately, I wasn't that happy with it so I'm hoping with the next visit, I will see its worth. So many other parents speak so highly of it, maybe it was just a gloomy day.

We met with a doctor and a team of therapists- OT, PT and ST who evaluated and played with Liam on a small mat as the doctor asked me questions about our daily life. He was a little overwhelmed and didn't have much room to move but he still played, and seemed to hit it off with the PT. We received individual evals from each therapist and then the doctor with an overall one. It started off good- he is super social, very strong in his tone and core strength, independent and knows what he wants.

But, there's always a but, the areas we were told to work on were the complete opposite of every other evaluation he has had in the last 16 months. They wanted him more vocal (seriously people?) and less independent- huh. They would like Liam to begin to tell us what he wants versus going and getting it himself. I was a little taken back by that but understood he should communicate more, especially if he needs us specifically but thought being independent was good! I was also advised we needed a lot more "real" words versus mama, dada, baba, moo, etc etc. Again, surprised because he has been babbling and talking since a very early age. When she said most 16 month old have 50 real words and start putting sentences together, I did ask if that was the Harvard track? No smile. Yikes.

From this evaluation, we had agreed to participate in a NIH study called Growing Up and its to help create new DS charts. Liam hasn't fit on those charts since about 9 months old and is 50% on the typical kids chart for both height and weight. We will be followed for 3 years every 6 months. The doctor at the study did tell us that he was one of the biggest so far they have seen at his age, taller and heavier (but proportionate). Then they did a neurological study, checking tone, cognitive skills etc. And funnily enough, she marked him as typical, non DS in every category. I made a comment that she should go talk to the other doctor who told us Liam was only functioning at 8-10 month level, despite all the other groups saying he was on track with his age. Sigh.

Unfortunately, we headed to the labs next to get our immune levels checked next. We have not heard back on this yet, it usually takes a week to two. His blood is tested against a control group as it reproduces, etc. Its very neat to hear about, even better when it does the right thing!

So the entire way home I freaked. Thanks Maureen for calming me down. I know a lot of 2 and 3 year olds. I don't really hear them speak with that many words or sentences and to think that we had been told his communication was his highest and most advance area. I should point out that as soon as we got home, I redid some of the tests with Liam and he did it perfectly for me, whereas at the doctors, he turned away and wanted nothing to do with her.

And the next morning, after a night of being sick, upset, tossing and turning, I went to ShopRite to get some groceries and walked past a familiar looking couple. They looked at me too and we figured it out- our kids were at CHOP at the same time. And as soon as I asked how their daughter was doing, their faces fell and I knew. She passed a week or so after we were discharged last March. It hit me like a ton of bricks and I cried the entire ride home. And then some. I was sad but mostly felt guilt. Here I was worried about one not so great evaluation and they lost their child, a 16 month old little girl who was being taken off breathing vent and it was too much. Do you know how many vents Liam was off and on? It is frightening.

We saw two of our three therapists this week and I explained my concerns and let them read the evals. They all had the same advice- we see him week after week, and have worked with him for a few months- CHOP saw him for 45 minutes in a setting he isn't used to. Trust us, he is fine. And I trust them wholeheartedly. Mr. Mike and Ms. Melinda are Liam's besties- he may cry half the time they are working him out but he exceeds each week and pushes through the PT. And he always gives kisses, high fives and waves goodbye as we leave happy as can be.

That couple has been through more than I personally know and we definitely thought we were headed in that direction- we haven't had it easy but they have had the worst any parent can have. No parent should bury a child, its not the natural cycle. So as I look at my entertaining, expressive, loud and happy Superboy loving life, I can't help but look up and say thank you. He is on his own pace and things can always be worse. Some people have been saying we are so lucky, we aren't Japan, or another disaster but there are disasters close to home too. When a young couple has to bury their 16 month old because she couldn't just catch her breath, that's a disaster. You don't need to look far in life to see reality- via Facebook statuses, blogs like this, the kid down the street. Be thankful for what we have and reach out to neighbors, family, see how you can be of service to them now. You would be surprised how much the question alone can actually help.

Officially Moved

2011-03-28T19:38:00.003-04:00

Pictures: Liam and I at the park on the 70 degree weather two weeks ago and Liam with his friend Isla from our weekly group class. He is a bit of a flirt!

So we moved to Cranford, NJ in early February and closed on our house two weeks ago- its been a hectic few weeks, but we love the house and are having fun making it a home. Liam loves it too, if at all possible, he is a happier more energetic kid! Most of our days are spent playing, unpacking, therapy and just being a family again- its been amazing.

This past Saturday night, Alex and I attended a fundraiser for CHOP's CCU unit. We didn't stay long, it had been a long day already and we had an hour ride to get home, but we ran into someone we knew as we were getting ready to leave. As we walked past a table of other couples, someone grabbed my arm and said, "You're Liams parents right?" I recognized her but forgot her name. She knew Liam's story, who was discharged a little over a year ago. Karen was the PA in charge of Dr. Sprays surgical team. The fact that she remembered us, our son and his specifics, out of his 1200 cases a year means we made quite the impression..oy!

We are seeing Liam making some advances lately, getting a few new words in and pulling to stand on anything, getting into the crawling position quite a bit and trying to figure it out. Our therapists goal is to have him cruising along furniture and taking a few unassisted steps by June, which she thinks he will beat. On the other hand, he also is fearless. This means diving head first off couches, beds, anything to give me a brief heart attack and thankful I played sports as I grab a leg to stop him from crashing. We have gotten into hand stand position several times, which he cracks up in as he looks around. Trouble with a capital T.

While we finally just moved and got our stuff back, I'm also excited for an upcoming 2 week trip to DC. Alex has a class he needs to take and will be gone for 5 weeks so Liam and I will head down for the first few. We don't want to miss too much therapy though and will stay through Alex's birthday in early May then come home.

We are hoping for spring soon so Liam and I can start our garden soon! Best wishes to you and your families!

Healthcare/Obamacare

2011-02-28T07:44:00.004-05:00

I keep telling Alex that in this economy, all I care about is having good healthcare vs a salary- crazy, I know, but with Liam, its what matters. This blog is not meant to be political in any sense but I just read a post on one of my heart mom's boards from a young mother in London. She is in a not so great hospital, with her son who like us, received a postnatal diagnosis for a heart defect and needs surgery. There is a better hospital in the area but because of their healthcare system, very similar to Obamacare's model, she cannot transfer him. In fact, her cardiologist said with the back up they had, it would take a full year for her transfer request to even be considered, in which time, her son would die of heart failure. She is scared that something will happen at their hospital since they do not have the experience as the other one but he needs the surgery and cannot wait.

We were in the same place with hospital experiences and received a lot of push back by not staying local for Liam's surgery, even when he had a tet spell. Our push back and surprise came only from local medical staff interestingly enough. We were actually told we couldn't see a local cardiologist at first- who even misdiagnosed Liam's heart defect.

We didn't choose to stay because our healthcare allowed us to go to the number one hospital in the country for the repair, where 1200+ surgeries took place each year with 30% being the same defect Liam had. Our surgeon Dr. Spray is ranked in the top 3 of the world- in fact, as we arrived, a Saudi royal family was rumored to have been being discharged, after also having Dr. Spray operate on their child. We aren't royal, rich or high up on the political hierarchy, we just have private healthcare, in which we pay for every two week, several hundred dollars a month. Take note unions. In comparison, our local hospital system of INOVA, the same system that did all of my pre natal care and testing, that missed the heart defect and Down Syndrome, could also do the surgery. About 350 surgeries a year, total, among an entire surgical team of all heart defects. Their mortality rate- 3% higher than CHOP. And when 5 in 100 die, 8 in 100, is a lot more. For us, it wasn't a question- we were going to go there, and into bankruptcy if necessary. Not to mention the ICU care after was not 1 on 1 like CHOP, which is what saved Liam's life when a nurse finally listened to me about his breathing issues and he was rushed back to ICU before coding. The post op care was more important in our case than the surgical team was at the end of the day.

My point of this post is to ask you to remember to be thankful for what a great healthcare system we have and I'm proud to help pay for- the political rhetoric in this country is explosive and the truth is not being told. This poor mother has no option with her healthcare- I don't know how to respond to her or to support her when I know what she is fearing. She has no options and that is a tragedy, a child's life should matter more than a system of rules and regulations.

We've Moved!

2011-02-20T11:46:00.003-05:00

So many updates and happenings- first, Liam turned 15 months old on February 11th, last Friday. He also began sitting up by himself and it is all he wants to do now! Liam is definitely ready to move, he is in constant motion. Occasionally, he will get on all fours and rock in place, but it seems he is more interested in standing or kneeling if he can pull up. So finally, we are seeing something in the gross motor skills delay he has had. He also has been pretty funny, he definitely is an entertainer. Liam now likes to give high fives and has just started blowing kisses.

We unfortunately had to go to the ER two weeks ago- a stuffy nose turned quickly into a wheezing noise that had everyone scared. Thankfully, it was not RSV and they sent us home. But two days later, he sounded worse and the pediatrician confirmed early stages of bronchitis. We were put on some antibiotics and Liam spent most of the week inside.

On the positive side, he had his hearing test and everything is absolutely normal. His ear canal was just too small to get a reading previously. I have an eye appointment for him coming up and need to schedule a dental and an x ray- apparently a lot of DS children can have a spinal fusion issue where they aren't allowed to tumble. Its just precautionary. So much to stay on top of and keep up with, I feel like a health care manager more than a mom sometimes!

He also had his 15 month appointment and the pediatrician was very happy with how he sounded despite being sick. He is in the 50% on the growth chart of both height and weight on the typical chart- 25 lbs even and 30 3/4 inches. He really had a growth spurt recently, he is looking leaner and his Buddha belly is not as big as it was a few weeks ago. Why this makes me sad, I don't know!

Last Wednesday, we finally moved! We had the keys a week before that and found a great painter who got our rooms to look how we (read: I) wanted before all of our stuff got here. The move was a long day, we have unpacked a few broken things and I am having trouble finding a few things too, so claims process will begin at some point. For now, we are slowing getting rooms put together, not 100% but livable. Liam loves the house- he finally slept through the night and knock on wood, since we moved here, he has every night since he is back in his crib.

That's it for now, its been a while since we've updated. The picture is from the day he turned 15 months. Happy long weekend!

CHD Awareness Week

2011-02-11T15:44:00.001-05:00

February 7-14th is Congenital Heart Defect Awareness Week- and while my heart friends have been posting on Facebook and their blogs, I saw this one on Erica's, and it touched me.

CHD Awareness Must Read; "Miracle is his daily grind"

"...after hours of surgery, this child’s heart, stitched up and restarted, might well beat once again, sending blood and life and a future to a body that earlier this day was dying. What happens when you see this is something both unreal and hyper-real. It’s something awesome and emotional. Something spiritual.

You feel small."

Today I'm posting excerpts from;

To Save a Child’s Heart

Chuck Fraser and the Unbelievable Life of a Pediatric Heart Surgeon

by Tim Taliaferro

--
This feature story on a pediatric heart surgeon is well-written. It deserves to be read in full (I strongly encourage it). But, as I know, time pressures abound for all - I attempted to capture some of the most breath-taking parts. Enjoy!
---

"They keep it meat-locker cold in the O.R. It smells of sterilizing chemicals. The bypass machine, a maze of tubes and tanks, whirs quietly next to another machine that keeps the temperature of the patient’s blood below freezing, inducing hypothermia. It hums like a refrigerator...

Every heart surgery has four basic steps. The first involves opening the chest by cutting through the breastbone. Step two is getting the patient on bypass. For a surgeon to open up a heart, he or she must stop it, requiring a machine to then circulate and oxygenate the body’s blood. They call it bypass because the surgeon will insert tubes into the aorta and the inferior and superior vena cavas that will divert or bypass the blood away from the heart. Step three is stopping the heart and repairing it. Step four is getting off bypass and sewing everything back up.

Each step takes considerable time, and each has its particularly tricky moments. Choosing the size of the bypass tubes is one such moment: a tube that’s too big could damage the artery or vein, while one that’s too small might hinder bloodflow. And moments before you begin the bypass, the patient must be given blood thinners, which means from that point on any cut or puncture will be much harder to stop from bleeding uncontrollably.

Once the patient gets on bypass, the room goes totally quiet. The monitors that had been softly beeping go mute, and after an injection of potassium into the surrounding coronary arteries the heart very suddenly ceases beating. Now, with one quick movement, Fraser slits it open.

Even though he’s seen the insides of hundreds of hearts and has seen many scans of this one, Fraser can’t know exactly what he’ll find until he looks inside. No two hearts are exactly alike, and when dealing with congenitally defective hearts, anything is possible.

It’s easy to take for granted nowadays that doctors can open up a heart and fix it. The novelty of open-heart surgery has faded in the decades since it was first done. What was once a rare and brave new medical enterprise is now an everyday one. It’s not that it’s no longer impressive — it’s just not surprising anymore.

Yet something happens the first time you peer into an infant’s open heart, formerly beating, currently stopped, while a surgeon manipulates its innards, correcting with scalpel and stitch what went wrong when some tiny strands of genetic coding crossed. The sight defies belief. This isn’t a real 5-month-old on this operating table, with its chest sawed open and its strawberry-sized heart sliced down the center — it can’t be.
But it is. And not only that, but after hours of surgery, this child’s heart, stitched up and restarted, might well beat once again, sending blood and life and a future to a body that earlier this day was dying. What happens when you see this is something both unreal and hyper-real. It’s something awesome and emotional. Something spiritual.

You feel small.

Standing there, looking down into the atria and ventricles, the enormous scale of the operation hits — and the stakes. Hearts aren’t meant to be seen. When they are, it usually means someone has died or might soon. As far as treatments go, heart surgery represents the nuclear option, a bold final effort to save a life by bringing it to the brink of death. The risks are high...

Three steps completed, one still to go. Getting the patient back off of bypass is no easy matter, and in a way it’s a moment of truth. The heart opened, the fix made, and the heart closed back up, this is the first chance to see whether it will work.

The heart is restarted. It’s beating fine. Fraser instructs the perfusionist, the person who runs the heart-lung bypass machine, to reduce bypass to 90 percent. “Yes, sir. 90 percent.” All’s OK. Then 80 percent. Something beeps in the background. Now 70 percent. More beeping. Fraser looks thoughtfully at the heart. The beeping gets louder, more urgent. Something’s not right. Fraser looks down again, then back up at the monitor. The patient’s vitals are falling. “Go back on bypass,” he says.

A great many people have arrived in the operating room. Some had been here earlier and left. Others are new. The atmosphere has turned tense, and everyone’s alert at their stations.

The patient is safely on bypass, but Fraser’s perplexed. “I’m not understanding this,” he says, between looking up at the monitor readings and checking around the heart. He’s wracking his brain. The minutes crawl by.

Every time they try to back off the bypass, the patient responds poorly. The problem doesn’t appear to have to do with the heart, which is beating fine. Apparently the lungs are to blame.

Fraser seems mostly frustrated at not being able to do something. There doesn’t appear to be a surgical fix for the problem, so he must stand there, his hands restless, watching the monitor, hoping in the seconds between each update that the numbers will improve.

As the minutes turn to half-hours, the experience drives home what an audacious idea the notion of heart surgery is. There’s no such thing as a minor surgery. It is risky, intrusive, Promethean work trying to fix what nature got wrong. And even the very finest surgeons in the world sometimes get stumped.

Fraser tries again to back off the bypass, this time in smaller, slower increments. Ninety percent. Stop, wait. A few beeps and a slight downward slope on the graph. Then steady. Now 85 percent. A few more beeps but no crisis. Slowly, and with caution, they back off the bypass completely, and in time Fraser is satisfied that the patient is stable. He begins the long, slow effort to stitch up the child’s chest and wire shut its sternum. At 6:15 p.m., he finally steps away from the operating table for the first time.

When surgery goes well, and Fraser manages to fix and restart the heart, ease the child off of bypass, and sew up its chest; and when, after eight nonstop hours of intense concentration, he finally steps back from the operating table; and when, hours later, the infant opens its eyes and sees its parents’ faces, the whole episode seems, in a word, miraculous.

For Chuck Fraser, this is why he became a surgeon. It wasn’t just because he had the brains, the hands, and the constitution for surgery. It wasn’t for fame, prestige, or money. He became a surgeon for those moments afterward when it becomes clear that a child’s life has been profoundly changed. “I became a surgeon because the results are immediate,” he says. “I became a children’s heart surgeon because the results last a lifetime.” It’s what gets him up every morning, what sustains him through emergency weekend-long transplant operations, and what makes the time away from his family worth it. His wife, Helen, says, “It’s the difference between a job and a calling.”

* * *

At a little after 7 p.m., he’s just passed the 13-hour mark and Fraser is sitting in his office on the 19th floor. He’s still in his surgical scrubs and hat, leaning back in his chair, elbow on desk, head on fist. He stares vacantly ahead: he’s just now coming down from the adrenaline high. Far from a hero’s welcome, several dozen e-mails await him, and he expects an hour of paperwork still ahead.

Shortly after 8 p.m. Chuck Fraser turns out the lights in his office. His secretary has long since left. He bids the crossing guard good night as he walks back to his suburban and drives his tortuous route home.

What amazes someone when this miracle is his daily grind?"

Mom's Health Update

2011-02-02T09:47:00.002-05:00

A quick update on my health, since its not something we have focused on in the last 14 months- I went to the Maternal Fetal Medicine group at St. Peters in NJ, which is affiliated with CHOP and recommended by our cardiologist. I went through my life history, family, Liam's last year- yes, we had a 2 hour conversation. But at the end of the meeting, he reassured me several times, the Down Syndrome came first, and that was just a chance happening and not something either Alex or I caused with our genetics. And the heart defect was because of that, not because of anything else and again, we were not to blame.

I don't know why it took this long but I finally believe him. I think I will always have guilt and all Mom's do, but I can work through it. I can believe 99% of the time that this wasn't our doing. We talked about future babies and our chances of it happening again. Obviously, there is a higher rate than the average 31 year old, but not much more, perhaps 1 in 100. With heart defect, it is slightly higher but because Liam has a chromosomal issue, it is less than others would have.

Oh and I'm all of 8 lbs from my pre baby weight. Finally, its starting to work its way off now that I'm not insulin dependent. The doctor estimated the insulin caused at least 30 lbs of water tissue weight which is the hardest to lose so I'm getting there. Can't wait to move and get my clothes back to see how they fit!

Let it snow...

2011-01-31T21:09:00.003-05:00

Well, we will be snowed in for a few days...again, so I figured I'd update the blog rather than clean up all of Liam's toys from today's adventures. We have started off the New Year with some follow ups with our specialists. We have half a dozen doctors in the first two months, not including normal pediatrician appointments.

So little man is no longer little. Just under 25 lbs now, he is talking all day long, he understands so many words and what we're saying to him and he has a typical up to no good little boy personality. When he is reaching for something, you say No Liam, he looks, smiles and continues to look at you as he reaches. And you can't help but laugh which isn't helping I'm sure but its adorable. We started Early Intervention and we will focus on gross motor where his delays really are- being able to transition into sitting, standing, crawling, etc. I also do a group class and private therapy, and not including playdates or Mommy and Me classes. Hopefully, this will show a lot of progress. And yes, Liam has a more exciting life than we do. Combined.

On the health front, we had another hearing test done this morning. His left ear canal had been so small in the past the diagnostic tests just couldn't get a reading. He did pass his newborn and because he communicates pretty well so while we weren't that worried, it was a nice relief to finally get a real reading today. His hearing is in the normal range. It took three of us to get the test done- I had to hold him against me and put his arms down so he couldn't grab the wires, or shake his head. Oh, or make any noise. Two doctors- one blew bubbles and one played peekaboo. And that was the recipe to finally get the test done correctly- four visits later. Phew.

The most exciting news for us was his recent immunology visit. The doctor thought he looked wonderful and he really is the picture of health- pink cheeks, uh chubby.., happy, etc. They ran blood tests to check all of his levels in the immune system, which we need to do every 3 months. Every number improved! And the b cells, who actually do all the work, they doubled- which is amazing. He was at 200 in August, 300 in November and now just over 600. Granted the low end of normal is 1200 but we're getting there..it just gives me that image of Liam being able to actually go to pre school at some point, not taking so many antibiotics, finally getting vaccinated- it brings us closer to normalcy. I never would have thought a year later we'd still be fighting complications, particularly when he looks so good, you wouldn't think he has little to no immune system. We are extremely thankful and grateful every day.

This day last year we were actually getting some big news- it had been ten days of Liam going backwards, breathing tubes, talks of preparing ourselves, two different sets of chest tubes and Liam in a constant state of induced paralysis. I hadn't held him. I could only touch his forehead, he had an IV in every leg and arm. He was finally stable enough to get a cardiac catheter to take a look at the heart because the echo showed no issues with the repair. They said it would be 4 hours. 45 minutes later, the nurse came very quickly and asked us to go into the consult room. I feared the worst. I think we all did- it was Alex, my father and I. Dr. Bird and Dr. Andy, I really don't remember his last name or if ever told me it, began to explain that when the dye they inserted into him was pumped, both chambers lit up and the 1 mm residual VSD around the patch blew up to almost 6 mm. I immediately realized it.

I can remember just sitting Indian style with my hand in my heads, looking up quickly and looking Dr. Bird in the eye and saying- You have to go back in, don't you? And seeing the concern and compassion in his face as he said yes. At that point, they didn't know if they were going to go in then or wait. Dr. Spray, his surgeon was on travel and he actually called, was able to review the catheter video and said he wanted to do the surgery himself. They scheduled it for first thing Wednesday morning. But they told us in no uncertain terms, if his status changes, the on call surgeon would go in immediately with their team.

We felt relief, it was a mixed emotion knowing he had to go back under and have the same dangerous surgery, by pass machines but we finally knew what was happening inside of his body and there was a way to fix it. His heart was mixing bloods and his lungs were getting 4 times the amount of blood it was supposed to be handling. And here we are today, a year later, fighting the complication of having all that fluid which drained his immune system out. Its so ironic. I was so worried about the surgeries when it was the recovery that mattered the most for Liam.

Ah anyway, sentimental feelings for the little guy at this time of year will always remain. I prayed a lot- mostly to my Aunt Cindy because at that point, I questioned God a lot and wasn't really all that happy with things. She passed away Jan 21, 2007, at a young age, leaving behind a beautiful family because of breast cancer. I talked to her a lot, outloud so I looked crazy at Liam's bedside probably but she was someone who taught me strength and a lot of perseverance. This time of year is always going to be tough but I'm convinced Cindy was with Liam the entire time during his fight and she gave me back my son. January is always going to be bittersweet- I was given my son back but I also lost someone so important to me. All this snow doesn't help either but I do remember at the end of her funeral service, it had begun to snow and that's what gets me through a winter like this, she loved to ski and tried to teach me.

One Year Annivesary

2011-01-20T22:10:00.002-05:00

One year ago yesterday, Liam and I took our first helicopter ride, from Virginia to Philly, which in retrospect, is frightening but kind of neat. We had spent almost 10 hours in our local emergency room and then once the crew arrived, they took over and I finally felt some relief. The pilot was a veteran, much older and could have been in the movie Good Morning Vietnam. I held onto Patton, Liam's teddy bear and he was strapped in a board. He was given sedation but never slept- a first for the crew in something like 600 flights. This is also true for napping..he isn't a big sleeper. The flight crew actually stopped to see us a few times after that night, which really was thoughtful, despite all the kids they work with, it was nice to know they thought of us. We flew into center city Philly about 11:30pm and landed quickly. I walked with Liam down to the 6th floor and met Dr. Bird, who would be a familiar face and a comfort to me over the next two months. He got me acclimated after examining Liam, worked him into the surgery schedule and walked us through what would happen. As he was doing this, Alex, Mom and Dad were labeling all the frozen breast milk that Alex drove up. Kind of weird....but it had to be done.

One year ago today, at about 9:30 am, I handed Liam over to the doctors outside the OR and said a quick prayer. I let everyone else, Mom, Dad and Alex, give him a kiss first and then I gave him a hug and kiss. Letting go was hard. In fact, the nurse had to pull him a little. He was supposed to be in his crib but I asked to carry him down the long hallways. It was a bittersweet moment, you know its best for him but you're frightened that you will never see him alive again. Open heart surgery is risky- Dr. Spray literally takes his heart out, it stops beating, he is iced down- I can't even think about all the details, which yes, I tried to read about but could never get through it. Our nurse made all the difference with our nerves, Mary Katherine. She kept us calm, gave us constant updates and a hug when we were told he was done within an hour, 3 hours less than they thought it would take. When Dr. Spray met with us after the surgery, I remember Mom telling him that she loved him, which broke the tension and we all laughed. Little did we know what was in store for us, but as bad of a 24 hours it was, it was good too. He was "fixed". And with Liam officially sedated and who would be sleeping for 12 more hours, I had a huge margarita and finally slept for the first time in 2 days.

Today, Liam and I went down to CHOP for a follow up immunology appointment. I guess I didn't think we would still be doing such frequent appointments, be on meds, or having to worry about things but honestly, its been an amazing year. There were a few parents who didn't bring their babies home, who lost them or are still waiting for repairs/transplants. We have to wait for the blood work results from today's visit, it will be about 10 days for all of it. The doctor is hopeful that he has improved since he did get through his fever hospitalization in December so quickly. We certainly hope so too!

We are beyond lucky and grateful for this little boy, because he definitely isn't a baby anymore at 24.6 lbs, who standing is past my knees and today said Bye for the first time! I couldn't have imaginied at this point last year being so damn happy, but we are..and we love this journey.

Shove Off 2010

2010-12-31T15:30:00.003-05:00

I think its a classic case of a love hate relationship. That's right, 2010, I'm talking about you.

Love- seeing so many firsts with Liam, doing the typical baby stuff from talking, eating, laughing, goofing around, you name it, we had so many. Making new friends who understood our concerns, who've been throught it- we love you and your beautiful kids. The supportive family and friends who called, emailed, visited both in the hospital or at home, you gave us strength we didn't know we needed. I love that my relationship with my parents and sister and brother have changed to this amazing level. (Yes, we are moving out soon I promise.) The prayers of those we didn't even know that extended to thousands around the world, with messages of hope and love. You have made us feel touched by God Himself, you saved our baby. Its given us a new passion, a way to spread more love and awareness. I love that I've been given an insight into a part of this world I would never have known about without Liam- parents of not typically healthy kids. As a wonderful micro premie Mom shared with me, this is an exclusive club no one wanted to be in but we are. My love for Children's Hospital of Philadelphia is a deep one, we will never forget the names, faces, the helicopter pilot, doctors, surgeons, the moments that truly give us hope. We still need them as we continue to recover and we will do what we can to help CHOP do this for so many other families.

Hate- I will never get an answer to so many questions, like the one we asked a million times as a kid- why? I've confessed to every sin, I did my penance, I consider myself a decent person and I can't stop blaming myself for my son's health. I hate myself somtimes, was it that stupid chicken nugget I craved at 34 weeks pregnant that gave him two major diagnoses? No, then what the hell? Don't give my son the penance for the way I've led my life is how I think when I am honest with myself. I hate the anger I still have and that I know my prenatal care team can never have a finger pointed at them for all the mistakes they made. No other parent should have to have their life turned upside down. Probably the most important thing I've learned is who my true family and friends really are, and I hate that I lost so many people I thought were supposed to care about me the way that I cared about them. This was a rough way and rough time to learn what love really is but life is certainly short and I'm not wasting my time on them anymore. To shun my son because of Down Syndrome or use the word retarded, to not call and ask if he is ok, or email or text, or something and to say you're a friend, a family member, that's something I cannot forgive. And I hated that I had to pretend to be ok with what was happening, be strong and shut up, not my strong trait. I could not scream, cry, hit, curse something and just get it out. The Diary of a Mad White Mother is something I could have played the lead in. However, I did love that I slightly transcended into Ally McBeal and imagined myself doing this during specific moments during the last year.

I could go on, in both categories, for quite a while but I'll spare you my ranting and raving. Alex on the other hand, say a prayer for him, he gets to hear the majority of it. Every year will have ups and downs. This year had a few more downs than imagined but the biggest up is napping right now after playing outside in the snow for the first time today and loving it. That up loved opening up presents and ripping the wrapping paper. And that up, he is just the joy in my heart and life, and ultimately, I'm humbled for this gift.

A prayer of health, happiness and joy in 2011 to all- thank you for being our miracles this last year. We would be nowhere without you. Liam waves hi and gives big kisses with a little bite at the end to you :o)

Happy Holidays,

2010-12-27T17:18:00.003-05:00

Sorry this is a bit late but I hope everyone had a wonderful holiday! Here is a picture of Santa and Liam!

We had a crazy week leading up to Christmas including a trip to the ER with Liam which led to a few days of observation. Because of his immune system, with any type of fever we need to get him to an ER immediately. Last Friday, he was taking super long naps which is very rare and that night, he felt warm. Sure enough, it was 100.8, just over the 100.4 borderline. I called CHOP and was told get to St Peters and they would call ahead as should I. Alex drove while I made a ton of calls down there and explained about Liam's history but nontheless, at 6:30pm when we arrived, I had to go through it all again. We were put into the pediatrics ER in our own room and his temp was 102.4, just 20 minutes after I had taken it. We were admitted at 3am and moved to a room, but until then, we had all blood and urine samples, IV started for antibiotics and chest xrays. Of course every other kid there had RSV and were triaged in the hallway! A heart mom's worst nightmare.

Funny moment had to be walking Liam through the adult ER to the xray area past the man handcuffed to his bed being watched by two policemen. My guess was a DUI because I could smell the alcohol.

Around 4am, I went back and got a shower, packed a bag and took a 2 hour nap while Alex stayed with Liam in his room. We were put in isolation so any nurse or doctor who came in had to wear masks, gloves, etc and throw those out each and every time. Saturday morning was his worst moment, I got there about 10 minutes after he woke up and he was burning hot, 104.3, despite the Tylenol. His fever continually went up since we had arrived but this was the highest. He was so upset, hated life, snots out the wazoo and just crying- not our Liam.

Thankfully this last dose of Tylenol finally did it- this was his last fever and bad moments. Other than being unable to really sleep well during the day, we played, he drank bottles but wouldn't eat for us and just wanted to cuddle. All the blood work began to come back with nothing positive for what could be causing the fever. He had five rounds of IV antibiotics and by Sunday afternoon, we asked if we could leave. We were more concerned about staying in the hospital and exposing him at this point.

We were at the pediatrician the next morning for our Synagis shot anyway so Liam had an exam and the attending doctor at St Peters and our pediatrician had the same answer- viral head cold, will take him a few days at home to get rid of it. Its been over a week and he is still trying to kick the congestion- but I have also been sick for two weeks trying to get rid of it and so has Alex. Hopefully we will all get healthy and stop infecting one another asap.

In the meantime, Liam had an amazing Christmas. On Christmas Eve, Alex, Liam and I went to a children's mass and then out to dinner early. We were on the couch in pjs with a bottle of milk and hot chocolate for us big kids to watch the Grinch by 7:30pm and read our Christmas books. Santa went crazy this year as half the living room was full of toys for the little guy but he certainly has earned it. We are doing our best to not open toys until we move, which should be in about two weeks.

Christmas afternoon was the big family gathering and Liam loved seeing everyone, especially all of his cousins and watching them play. It was just a wonderful day, something we missed last year since we stayed home to keep him healthy.

At the end of the day, we are very lucky with his health- since being discharged in March, we have had only two ER visits and only one fever. He has done really well and is a fighter. The new year will only lead to greater things for Liam, who is now a whopping 23+ lbs. I cant believe he was 5 lbs only 13 months ago...the kid likes his food! I hope you and your families had an amazing holiday and if you're on the East Coast, enjoy the snow!!

Season of Hope

2010-12-13T11:53:00.003-05:00

We are gathering the toys for CHOP's toy drive this week and I saw this message from CHOP today- they have created a message system for all the kids to see when they turn on the TVs in their room. If you have a few minutes to send some encouragement, please do!

http://giving.chop.edu/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=3041

Being Thankful

2010-11-23T08:08:00.002-05:00

This year has taught us many lessons but being thankful is one we tend to think about daily as we watch Liam grow into a little boy. Can you imagine being a child or a parent of a baby who is in the hospital during the holidays? Its bad enough at any time but during a time typically spent with family celebrating, I would think its a bit more cruel.

Liam decided he wanted to put some smiles on the faces of other kids, I know, ambitious at 12 months old, and do a toy drive. CHOP has put together a holiday wish list, much like the tree's you see at the mall and church, looking for specific toys, clothes, activities for kids. We will accept all donations up until December 13th, unwrapped. We will head to CHOP that week to deliver the gifts to the Child Life, Education and Creative Arts Therapy Department.

When Liam had the chest tubes and couldn't move much, there was a light up toy that showed birds flying and chirping- something Liam loved and it meant a lot to us to see his eyes light up despite being positioned only one way. These are the kinds of toys that can really make a difference for other kids, please consider joining us and participating! The list has toys, gift cards, clothing, phone cards, etc.

Here is a link to the list. Please contact me directly if you'd like to help and participate: theresambrown@gmail.com

http://www.chop.edu/export/download/pdfs/articles/child-life-education-and-creative-arts-therapy/2010-holiday-wish-list.pdf

Health Updates

2010-11-18T15:25:00.002-05:00

Its been a while since I've updated the blog on the health side- I'll do that now and then later, add some fun pictures to make it worth reading!

We spent a whole day at CHOP last week in cardiology, endocrinology and then the labs getting a ton of blood from the little guy. Despite the 9 hours in the car and waiting, he did wonderful. The echo on his heart showed what we already knew, a pulmonary valve leak (in fact, it was cut right through), two residual VSDs (holes) around the repair. What it really showed was the heart was functioning exactly how it should and the two little holes are smaller than they really should be, which means his tissue is healing really well. His oxygen level was 99 as soon as she put the machine on him. And his EKGs showed no abnormalities. We are going back in 6 months and if all continues to look well, eventually just annual exams. The only negative, which we knew but don't like to think about, is that he will need another surgery to repair the pulmonary valve. CHOPs team just doesn't know if it will be in the next 5 years, or 20, 30, down the road. Many tet repairs like Liam are having the valve repair in the teenage years. The doctor was optimistic if it was when he was a teenager, it might not be open heart but rather the catheter. It would mean wonderful things for recovery and discomfort, which makes us hopeful.

Endocrin was really more of a courtesy- he is on thyroid medicine as a safeguard for neuro development more so out of necessity. His bloodwork came back today and his thyroid levels look perfect. We will probably remain on this medicine through 2 years of age at the earliest.

We then had blood pulled to check his immune system and we heard the results today- the doctor didn't expect to see much change from August, and overall, there wasn't much. His t-cell levels (the generals of the immune system) are still at about half of what most people have. However, those that are there are doing a great job because his immunoglobins (IGG) went up again and are now in the normal range! He will need to remain on the Bactrim and we will do another blooddraw in 3 months. Unfortunately, he cannot do any live vaccines for a while, possibly years, and this includes Chicken Pox, Measles, Mumps, etc. So we have to put our faith in other parents to get their children vaccinated to protect him. Sigh. Hopefully these issues resolve over the next two years or we are going to have to figure out what to do about preschool. He will need to remain out of daycare settings so it looks like Mom is home for now.

Earlier last week, we met our new pediatrician in NJ and she was great. Liam is growing so much he no longer even fits on the DS charts so on the "typical" chart, Liam is at 50% for weight and 10% for height and head circumfrence. He was 22 lbs, 6 oz, 28 1/4 inches. He was given all of the non live vaccines though so we are up to date on that.

Today, I met with the NJ Early Intervention evaluators and it was really quite reassuring compared to the way Virginia operates. Out of 7 areas, Liam is a typical 12 month old. None of these areas are special needs or DS specific, but all kids. In fact, he is advanced in 1 or 2, more of a 14-16 month old. For those who know him, yes, its the social aspect, surprise surprise, he is like Mom and Grandpa Brown.

He is delayed, probably about 3-4 months, on the gross motor skills. This explains the crawling/standing transitions but also reassures us too. He was on his back 10 weeks of his life so far, and then under restrictions for another 4 weeks. This basically equals his delay. The promising thing is that he is way beyond in other areas, communication mostly. He is doing more than other 12 month olds can at this point and its because he was unable to do a lot in the hospital. We know where we need to focus his therapies on and will be doing that. He might cry a lot but I think doing therapy here is going to get him a lot further along.

It gives me a lot of hope- every specialist has now told us he is high functioning. All of the original fears after the surprise diagnosis kind of melt away each time we hear this. Watch out ladies, he is apparently an excellent flirt, according to the report too. Young women in scrubs gets him everytime- cooing and cuddling. Much smoother than Daddy.

Birthday Boy Reflection

2010-11-11T21:31:00.002-05:00

A year ago tonight at 11:50 pm, my life forever changed. I didn't just become a new Mommy, I became a new person. I'd often wondered over the years about my career, where I would be in a few years, how quickly I could prove myself- it became a closed chapter when Liam entered this world. I didn't realize how important my career, my "grooming" would help me help my son or push me into my only role without ever looking back. Politics, fundraising, lobbying, advocating- my best client will be my little man.

A crash course in pediatric cardiology and Down Syndrome quickly followed his arrival and while I was scared of death, more than once this last year, we made it here. One year old. Take that insensitive NICU doctor who broke the news to us as if we were learning about the Giants game. "He may or may not survive, he will be docile, probably not speak much and sleep most of the day." All with a smile on his face, 8 hours after I gave birth as I held my son on my chest.

In a year, Liam has done quite a bit- he's had his first word, he can sit, he can commando crawl...backwards, laugh and light up a room, pull you in and give you the best kiss in the world. But this 22 lb little monkey also fought like hell, through hell, and he is here to show those insensitive doctors, strangers on the street, expectant parents given what seems to be devestating news- its ok. He is no different than you or me. It will be ok. Breathe.

Ah, breathing. There were a few weeks he couldn't even breathe. His heart was sick, he couldn't breathe and these two everyday things we take for granted- he got through that with scars that still give me pause. He is proof of the power of prayer, love, support, amazing technology. Liam is not typical, he has given us enough stress to last a lifetime but knowing where we are today, its worth it. He is one of the happiest babies I've seen, he loves with his heart and eyes. And he can breathe now. His heart beats pretty darn good now too.

Life twists, turns, offroads and speeds away from us all. I had both my highest moments and quite a few lowest of the low moments I hope to ever have in my lifetime in the last 365 days. Liam makes me who I am, he gets me through a tough moment with the twinkle in his eye and little things, who cares anymore?

Thank you William Michael Kuhns- you have taught me more about who I am in the last year than I knew in the previous 30. I can't wait to share our life growing with you and seeing the world in your eyes.

Emma Grace

2010-10-20T08:55:00.002-04:00

There are moments I'm beyond grateful for Liam- this morning is one of those. When I signed on to Facebook, one of the good CHOP friends I made posted an article about a little girl who passed this weekend. Her mom first met my mom while we were at CHOP, she was on the phone with social security trying to explain that she wouldn't leave her daughters side to get her a card and was pretty upset. Christina was feisty and I appreciated that when everything else seemed out of control, it was nice to know you can be still.

When I went back for Liam's follow ups, we sat together a few times for a few minutes and we talked about Emma and Liam. Their lives were so connected yet so different. Her Mother's Day gift was being able to take Emma outside to have fresh air. For the first time..Emma was 8 months old.

She is really one of the stronger people I met and her daughter Emma obviously got her fight from her Mommy. Christina needs your help- if you have a few dollars to spare, another CHD parent has begun a fund to help pay for the funeral costs.

Here are links to the article and fund. Please remember Emma and her family in your prayers.

http://www.delcotimes.com/articles/2010/10/19/news/doc4cbd07a47e27f105263195.txt?ref=nf

http://levibeers.com/2010/10/18/help-needed-for-baby-emma-graces-funeral-costs-please-share/

CHOP Walk Pics

2010-10-06T09:36:00.003-04:00

It was a great event- sunny but breezy, sometimes cloudy but lots of fun for the kids. The Star Wars characters came, Elmo and the Phillies Phanatic, whatever he is. We raised over $3000, had a team of about 20 and played raffles, the kids played in all the games from Abby checking out the Tot Land and Tommy and Sean playing soccer. It was really special to see so many kids, DS or not, playing together.

Here are some of our pics from the event! Thank you to all who came out, donated and kept us in your thoughts!

CHOP Results- Outlook is good!

2010-09-29T11:37:00.005-04:00

So we had our CHOP appointments last week with the ENT and Immunology. On the positive side, ENT said Liam's nose healed wonderfully and no surgery needed. Yea! On the negative, when they tried to rescreen his hearing, they first decided to clean his ears. No qtips here. Instead, we were moved to a surgical room and little man went into a weighted straightjacket holding him down and he just lost it, before his ears were touched. At 5 lbs, he hated being swaddled. At almost 22, still does. Next a large machine, about the size of the x rays was held against his ear and a 6 inch slim metal tool went in. It was horrendous. He was so terrified. After all this, the doctor still couldn't see the ear drum and suggested it might be the reason his last left ear screen didn't pass. From here, we went to get hearing tests done and not suprisingly, he fought it. I was kind of proud in some sense. He isn't much of a crier and he finally gave them a mouthful- a screaming Liam hitting the technician was amusing to me after seeing him so upset. Bottom line, we need to come back to get his hearing checked and we will go directly to the tests and not mess with him beforehand.

Immunology. Well, first, its not an exact science. Its a moving Tetris game from what we have seen. You don't always have an answer to the "what" is causing this but instead, you treat a moving diagnosis with the goal of preventing opportunistic infections. His numbers in August did not look great and the immune team is trying to determine what is causing this. They did 7 blood tests- three antibody counts, three vaccine reaction (how his body did with the vaccines he received) and then a blood draw where his blood was spun down to the actual microscopic views of his immune system- t and b cells. T cells are the generals and they tell the immune system what to do (so kind of like me, T, tells Alex), from the antibodies to b cells which fight infections, etc. This is typically housed in your thymus gland. Liam's was removed because it blocked the heart during the surgery and this is normal. What isn't normal is the amount of chest drainage the poor kid had so in addition to losing his immune house, the cells that were working roaming around his chest cavity were leaked out. In extreme amounts...to the point where they haven't seen this with other patients. Yay for being first. Read sarcasm here. (Adults typically leak 200-300 ml, which is about a gallon of water in your lungs. Liam was up to 1000 daily.)

So the blood they spin down is watched over a 7 day period to see how it operates. At the same time, there is a control specimen of another 10 month old and Liam is compared to the healthy blood. Our doctor cautioned us that it could be he needs more time to recover or he may have one of ten auto immune issues that kids with DS tend to have. But then we went further. And I thought I was going to vomit. It could be genetic and something that Alex and I carry. So not only could we be the cause of Liam's health, there goes the idea of future children. Basically, she needs to rule out 100 things and we were only on step 1. Once we got to step 20, the big scary words came out. Bone marrow transplant and chemotherapy. I actually ended the conversation because again, its step 1. Let's get through that first. These are also the reasons why its taken me time to post. I am still digesting this. I am not strong enough to deal with this and am praying daily to keep us at step 1.

We left knowing we would remain on his medicine Bactrim most likely long term to protect him as much as it could against those opportunistic infections and that if his antibody counts came back low, we would begin a monthly infusion at CHOP that would boost his antibody. Trying to imagine him sitting still for 3 hours, much less 2 minutes, while blood drips into him, pretty much has tortured me for the last week. Mostly because it would be me sitting with him and watching him in pain and confusion again. I will say it again- I am so happy that this is happening now and not when he is 4 or 5 and can remember this. You parents who do that- I am at a loss for words.

So after all of this going through my head for the last week and trying to remain positive, we got the call this morning. Now, again, its not an exact science but the first words I heard were " I am so pleased with the results" and I just said thank you. Antibodies- normal! No blood tranfusions. It should be 300 at age 1, he is up at 399. Boo-yah! Or however you spell it. All his vaccine results were normal!

Now onto the bigger test/results. His b cells are normal and doing their job but his amount of t cells, as we already know, are about half the amount he should have. When compared to the control, his function is between 50-60%. Thats not awful, its not great but what it does is show the immune team that they do work. His antibodies cannot work without the t cells and his b cells can't do their job without them either. The generals are still communicating and working, there is just less of them than what is normal. In terms of a diagnosis, it leans toward his body needing more time to recover. He will stay on the Bactrim until we see 6 months of normal t cell levels. It could be this spring, or a year to two. We don't know but as long as he continues to improve, this could be the answer.

Its a relief- I know we can't say for sure this is what is happening but I'll take this first round of tests as a good sign. We are going to get tests done every 3 months and see the team every 6, unless he begins to become sick. We are going to hold off on his live 1 year vaccines until the next round of results come back. He still hasn't had any vaccines that are live yet but its when we begin missing the 1 year ones that we have to worry more about exposure. We still need to be ultra careful with him, hand sanitizer, no daycare, because the risk benefit ratio of being exposed is against him. But this was a sigh of relief, to hear that his immune system knows what its doing, it just needs more time to build up and re-educate since its house is gone and the previous educated 'tenants' drained out.

Thanks for reading, I know this was a long one to get through. In other great news, our Buddy Walk team reached its goal of raising $2500. We are close to almost $3000 and the weather looks beautiful, if not a little chilly. 62 and sunny on Sunday morning! Like the team name, LIAM is strong.

CHOP Bound this weeek

2010-09-20T20:10:00.003-04:00

9/11/10 in Gettysburg, PA

So this week, we head up to CHOP for two days to meet a few specialists. On Thursday, we head to Immunology and sit down with the doctor to review Liam's previous labs and try to determine what is happening. From what she told me on the phone, its going to require quite a few blood draws and actually putting his blood in a lab for several days. Doctors will watch his blood to see how it produces, splits, builds, etc and they can then determine if it is a result of function or reproduction. We did learn that the gland that produces immunoglobins was actually removed during his open heart surgery but from the research I found, that typically doesn't affect it later on. The body should have all the immunities it needs when you are born.

On Friday, we need to meet with the ENT speciality group. When Liam was on the breathing tube and CPAP machines during his chest drainage, his nose got beat up both on the outside and inside. He has a scar along the bottom of his nose on the outside but internally, one nostril is slightly flopping over and much smaller than the other. I hope this is something that is ok- he hasn't had breathing issues outside of typical DS concerns. If not, it may require surgery.

While we are at ENT, we need to have his hearing test. We had it done here about 3 weeks ago and for whatever reason, on one of a handful of tests, his left ear couldn't be read. Unfortunately, it was the test that can determine hearing loss and it wasn't a fail or a pass. The doctor told me she thought his hearing was fine, particularly because of the other tests and that he hasn't had any ear infections so far, but she thought it would be smart to ask CHOP to take a look too. Fingers crossed it isn't hearing loss already. A lot of DS kids do have some but with the way he interacts, talks and wakes up when I walk past his room, I'm hoping its not the case.

There are so many parents in worse spots than this but I think living alone with Liam before these appointments is making me get inside of my head too much and anxiety might be creeping up on me. We had 10 weeks of hell and months of eggshell living. I just can't imagine going through more issues and I admire some amazing friends who have gone through it, over and over. I don't think I'll ever relax around him and I don't think I'm supposed to. The immune issues are the most worrisome. I really don't want to be a bubble again, and the last few weeks, we stepped backwards a little and played it safe again.

Well, thats the update for now. I think its going to take a few days/weeks to get answers on the immune system but the important thing is to get an answer for the cause, especially before the flu season.

CHOP Results

2010-09-07T11:25:00.003-04:00

Well the news wasn't what we wanted to hear- all three of his labs came back slightly outside of the normal range. Of the three, his hemoglobin was already re-tested back here in VA and its now back to normal but we need to keep him better hydrated with additional water/juice throughout the day because once this guy falls asleep at night, he doesn't wake up!

His thyroid function is slightly hypothyroidism and the attending endocrinologist at CHOP said if he was 3 or 10, she wouldn't recommend medicine because the number is just slightly above (range goes to 3.8 and Liam was a 4.4) but because the first two years are all about neurological development and this could effect it, she wants to play it conservative and put him on a small dose of Synthroid daily until he is 2. Sigh.

And then the worst news was his immune labs- he went down in the majority of categories which is surprising. We were expecting a slight increase since more time has lapsed since the surgery and the chest drainage. His numbers are back down from where he was in May. The most concerning news is that they just don't know why. The immunologist did have some questions for our cardiology team and we scheduled an appointment for September 23. In the meantime, he is going on Bactrim which helps fight against infections. The concern is a common cold could spell pneumonia for him and he needs protection against it.

For anyone who knows me pretty well, waiting until September 23 was just not going to work so instead, I reached out to our CHOP Cardiology team asap and got some answers to the puzzle. The one big question was if during the surgery his thymus gland was at all scraped or touched since this makes and houses your antibodies. Well...it was completely removed! We hope this will provide more guidance in how to treat his immune system. The good news all the other questions were no's and less to worry about. CHOP is going to do a study on Liam's blood cells and see how his cells function and reproduce. Their team is determined to get a health treatment plan in place before winter really comes along with all the sickness.

In the meantime, I have been a part of this terrific Mom's playgroup and Liam especially has really enjoyed the social and play aspect but I am going to have to cut back on the interactive stuff for him right now until we know what is going on with his health. I am going to try to find a middle ground for us to do some things and not others. He won't be happy but he will be healthy, which is what we want.

Here are some more recent pictures of our adventures:

CHOP Buddy Walk

2010-09-01T14:55:00.003-04:00

We are going to be participating on October 3 at the CHOP Buddy Walk and hope you can join us! Here is the link to our site- please consider spending the day with us and bringing the kids out too! It is a family fun day and there will be lots of activities for all!

http://giving.chop.edu/site/TR/Events/BuddyWalk2008?team_id=6462&pg=team&fr_id=1190

Can't wait to see you all on October 3rd, we will have a ton of camoflouge gear for the team!

Sea Isle City, NJ Pics

2010-08-26T20:27:00.002-04:00

From our very much needed week away with my family. Liam loves the water and the beach was no different. This was the last week of July.

9 month checkup!

2010-08-26T17:24:00.003-04:00

Liam had a great 9 month check up on August 13th. He was 18 lbs, 12 oz and 27 1/2 inches, which puts him at 25% for height and weight on the typical chart and a shocking 80% on the DS weight and 60% on the height scale. To say Liam likes food is an understatement! We were at CHOP on Tuesday for bloodwork to check his immune levels again, thyroid and hemoglobin- this is a new concern. At his check up, they drew blood and this level came back abnormally high. The doctor said he might have been a little dehydrated because he hadn't had a bottle since the night before (we were there at 7:30am). Hoping the re-test results show a more normal reading. Our therapist said at our last session that there is a normal curve for DS and a lower curve underneath that for kids who have had open heart surgeries and Liam is well above both, which made us happy. He refuses to crawl, only holding himself up for a few seconds. It may be his chestbone healing still or that he just has a weakened strength there because of his hospital stay, but the goal is crawling over the next few months. In the meantime, he sits, rolls and is trying to sit up on his own. We are working on the core strength still so his arms and legs can get stronger for the crawling and standing. When he stands now, he is curious about his feet and puts his head down to watch, and begins to fall forward! Its cute but not getting us closer to hitting that milestone.

And our ltitle man has made his Dad very happy because his first word of course is DA DA. He says it all day long...to me, MA MA, which I am patiently waiting for. Sigh! It is adorable to hear his voice past typical babbling.

2010-07-21T11:42:00.003-04:00

This was created by another CHD Mom who is a graphic designer- thought I'd share my little hero's CHD tag!

Its Officially Summer..and way too hot!

2010-06-23T14:38:00.004-04:00

We've had an exciting two weeks- after Liam's baptism, he began hitting a few milestones pretty quickly. He now likes to roll from back to stomach and on his own, this was a big one for us! And when he is in the sitting position, he can hold himself up with his hands on the ground. Its a great milestone and the therapist was really excited for us. We are practicing everyday and he continues to get stronger with his coordination. Liam does get very frustrated though when he cannot move, he tries to crawl, climb, move...we have gotten to the point of not being able to turn our back.

Liam is also now eating-his favorite so far is sweet potatoes! And occasionally he will hold his bottle and feed himself which is a great help for me when trying to multi task. Of course, all this eating has helped him gain some weight, he is now 16 lbs, 1 oz. In the 70% percentile on the DS chart..its hard to remember the 5 lb baby we were so scared to hold!

We haven't sold the house yet but are hopeful its coming soon- if you know of anyone looking to move around northern Virginia outside of DC, let us know! Living apart has been pretty hard for us, more lonely for me. We are alternating weekends and driving up and down 95 is getting old, especially as I start seeing the turtles on top of SUVs and families together heading to the beach.

In some great news, one of Liam's CHOP friends, Makenna had her open heart surgery last week and is doing great. She went home last night- another success at CHOP! We hope to reunite the little ones this summer at the Jersey shore and let their romance blossom :o)

Baptism!!

2010-06-14T17:26:00.003-04:00

We had Liam's baptism yesterday- it was a fun service and an even more fun party afterwards with our family! Here are some pictures!

CHOP Visit Results

2010-05-31T16:05:00.002-04:00

Memorial Day is a time of observance of those who lost their lives serving this country and fighting for our freedoms. Our neighbor rode in the Rolling Thunder parade, the flags are out and its a nice day for patriotism. Its hot as heck out so while we are dressed in red white and blue, we are inside...I've been using today as a time of reflection of Liam's time in the hospital and saying a prayer for those little ones who fought a great fight as well. He is a survivor yet there are little ones who aren't that I know other heart families remember.

Last week, we had a cardiologist follow up and immunology visit. Our cardiologist said Liam's heart looked great, both in echo, EKG, and was really amazed at how well he is doing post op. She even said he was looking better developmentally than most other post op kids, with or without chromosonal concerns. Liam and I were on our own with Alex still in training so we celebrated by jumping on our king sized hotel room bed, eating rice cereal and ordering room service. It was just a nice feeling to truly feel good going to and from CHOP. It is hard though to see some of the same children who were there in January when we arrived. I was able to see a few parents and catch up with them, although I also don't want to be in their face at the same time. While Liam had his time there and faced his own struggles, it was hard sitting next to his crib watching healthy babies in strollers and I just didn't want to make others feel that way. Its a bittersweet feeling going there, both good and bad memories. The best news when we left was no follow up for 6 months!

The next day we went to the immunology visit. This one was a little bit trying..got there at 10am. We weren't seen until noon. Then sent to get bloodwork and it took almost 2 hours for that. Liam and I didn't get on the road back to DC until 2:09pm and I cringed because of the well known DC traffic. (4.5 hour drive alone with a 6 month old..not fun) The good news leaving this visit was they thought his immune issues had nothing to do with anything other than his chest drainage and chylothorax. Also, a lot of DS kids have a lower immune system as it is, so he kind of got a double whammy. A week later, this past Friday, we just got his results- everything has improved! He still has one antibody that is pretty low and a particular white blood cell as well. They will recheck levels in September again. But we can be less vigilant and enjoy fresh air, errands, other kids within reason. Definitely more reason to celebrate.

So on Liam's health front, we are continuing to get stronger every day. It has been almost 3 months since we have left and we are officially down to ZERO medicines. Life with him gets more fun each day. He is quite the mover and shaker. Liam so badly wants to sit up alone, crawl, run, you name it- he is ready to move at all times. Sigh, if only I could get a nap from him once in a while....oh well, must be making up for lost time!

Prayers

2010-05-20T23:49:00.001-04:00

Sometimes life is just not fair and this is one of those times: another heart mom lost her 4 year old daughter Chrissie. Please include them in your prayers as they celebrate their princess and grieve.

http://allarepreciousinhissight.blogspot.com/

Its times like this that I am definitely going to let little man snuggle in bed all night. Kiss your babies tonight.

6 Months and Reflections

2010-05-11T17:00:00.003-04:00

At 11:50 pm, on November 11th, through tears and smiles, we welcomed our little beautiful boy into this world. We had no idea what was coming or the strength he would give back to us. Through all of the ups and downs, he is a happy, strong, handsome little man. I can't believe its been 6 months. Everything he went through feels like a bad, distant dream. We still have a fight with this immune issue but he has done well so far, we feel he really will push through and be 100% healthy.

On Mother's Day 'eve', my parents came down to visit while Alex is gone on a business trip. Everyone had gone to bed and Liam woke up, talking to himself around 11pm and I decided to indulge his need for attention. We got into my bed, put on SNL and watched Betty White kill it, as he and I babbled together. The clock hit midnight and I looked down and there he was, sleeping peacefully against my chest, holding onto me tightly with one arm. There is no better Mother's Day gift than the health of your child and looking at his pink cheeks, golden hair, and sweet sleepy smile, I thanked God, Alex, my family, all of you, our friends, prayer warriors, for just thinking of us.

All of the changes we have been through has also changed my personal path and that has been a lot for me to embrace as well. I was on a great career path in political and business management. I have been in DC since I graduated college with intentions to push through to executive level at a young age, make a name for myself and embrace all the nation's capitol had to throw at me. In some ways, I am sad to leave-friends, coworkers, fundraisers, Eastern Market on Saturday mornings, favorite restaurants and politician spotting, even football on fall Sunday mornings with the Potomac River and the White House as a back drop- its a beautiful city. I never had planned to leave but when you marry someone, its not about you alone anymore. You make decisions based on what is best for both of you. That was a big change, I am kind of stubborn as some know. But then, you have a child and everything just hits the fan. He will always be first, healthy or not, and his needs will outweigh mine by a million tons. But moving home does so much- Alex will be in a job that he is overjoyed about and will take him down a career path he has dreamnt of; Liam will be close to his specialists at CHOP and more importantly, know his family as he grows up near everyone. And then there's me..I get to go to family parties more, watch the cousins grow up and maybe reengage with some friends from home, past a Facebook comment here and there.

I have had an amazing decade in DC, I have met some amazing public figures from President Bush to President Musharaff of Pakistan, travelled around the world, been exposed to the best business leaders who coincidentally are also some of the most compassionate people I have also met, and frankly, I accomplished what my original goals were. We might be back one day, one never knows where our paths will take us or the federal government or Army it seems.

I will miss being on the inside edge, hearing about the news before CNN breaks it and the opportunities abound here. But, if I'm honest with myself, the motherhood path has given me more in 6 months and has taught me more about myself than the last 30 years. I know who I am, the core of my being has been tried and I am seeing what my future holds. Its going to be a little scary, the unknown for me always has been, but a clean slate and a new chapter is pretty exciting.

I'm packing slowly each day, a room or cabinet here and there, and while some of its sad, I am finding my biggest smiles are finding the random pacifier or a photograph from our wedding day or a memory, like when Alex and I painted our bedroom here, our first home. My foot was teal for a week and I learned an invaluble lesson to always wear socks when painting. Memories are living proof of this life I've created and made, and DC brought me some of the fondest of them all.

Horse drawn carriage ride through the city at midnight and Alex proposing to me at the Jefferson memorial

Walking down Independence Avenue as NJ's Cherry Blossom in 2002

Trying to find my uncle John on Pennsylvania Ave 9/11 after watching the Pentagon burst into flames out of my boss's window and not being able to get a hold of my family- I went out and got a cell phone that weekend

Meeting President Bush and VP Cheney, more than once but being in awe each time of how lucky I was

John Thune's victory party in 2004

Too many margaritas at El Paso Cafe and queso with some of the best friends a person can have

And the list goes on. Thanks to all who have helped me live my life and teaching me so much about myself.

Spring is here!

2010-04-29T11:38:00.003-04:00

Its been a while since we posted- life has been certainly busy. Alex was offered a wonderful opportunity and is being relocated to NYC. So, we have put our house on the market and spent some time just getting it ready, moving things into storage, beginning to pack. Exhausting! We have been up to NJ to look at houses and found one in particular we love, so we are hoping to sell quickly so we can make an offer.

In the meantime, Liam has been doing wonderfully. We are being seen basically once a week either by a pediatrician, cardiologist, home health nurse, etc. Last week, our local cardiologist said his heart is healthy and while they will keep an eye on it, it shouldn't hold him back from playing sports, developing or just being an active little man. We will see CHOP's cardiac team next month and then again in July. After that, it sounds like twice a year we will be seen.

We were at CHOP just this week and saw the endocrinology team. While he was in the hospital and going through the tougher times, Liam couldn't regulate his temperature and there was concern that his thyroid was sick. He has been on medicine since and we had labs drawn to check the levels. Good news- his thyroid is healthy and no more medicine for that one! He will get his levels drawn again next month during our visit.

For now, the biggest concern for him is still the immune system. We had those labs drawn as well on Tuesday but they take a while to come back for those particular tests. He takes antibiotics to prevent any infections called Bactrim and it might be some time on this drug. We will meet with the immunology team next month as well and hopefully will see some improvements through the bloodwork.

In the meantime, Liam and I are enjoying the nicer weather with daily walks, rocking in the hammock every night right before Daddy gets home and hitting milestones. His therapist is positive about his improvements between each visit. Our biggest challenge is rolling over. He loves to sit up but gets stubborn with the tummy time into rolling!

Hope everyone is enjoying their springs- I can't believe he will be 6 months old on May 11. 6 months ago, we weren't even sure he would live this long. We can say that 3 months ago too. And now, we are looking at a clean bill of health, 13 lbs, 2 oz, of a very happy and smiley little guy. No tubes, no wires, no equipment. Just some rice cereal, right Grandma?

Thank You All

2010-04-08T19:48:00.005-04:00

Alex and I recently made a video to share with our family and friends about Liam's experience and we wanted to share this, if you haven't seen it. Our family and friends have been amazing, getting supportive comments on here and in our inboxes have been so uplifting. As we told our family--You kept our spirits up, gave us hope and made us feel somewhat normal in a very crazy situation.

This may be tough to watch because some pictures we have never shared before
and there were also a few days where we just couldn't take pictures, it was
too hard.

http://www.onetruemedia.com/shared?p=aa1305a5d16fc704bdb08f&skin_id=701

Every year, we plan to become very involved and do charitable
work that will benefit Ronald McDonald Charities, Children's Hospital of
Philadelphia patients and Little Hearts Foundation in honor of Liam and all
of the other children who go through this. This fall as we get closer to
Liam's 1st birthday, we will do a wish list drive- CHOP kids have wish
lists of toys and items needed for the patients. Over the winter, we will
mark his surgery dates by hosting and serving dinner at the Philadelphia
Ronald McDonald House. We plan to be active in Little Hearts and work on
fundraisers with local companies and restaurants once we settle in to our
new home, wherever that may be. We hope we can steal some of time of your
time to help some other little warriors along the way.

Thank you again for being a huge part of this success.

Somebunny loves you!

2010-04-02T14:22:00.000-04:00

He fell asleep right before meeting the big bunny but gave him a once over before passing out in his arms.

There's No Place Like Home

2010-03-26T21:26:00.003-04:00

Picture is of Liam after his bath tonight- he weighed in today at 11 lbs, 9 oz and is back to the 50% growth percentile!

We have been home three weeks and its been a whirlwind. My little brother Ryan met me at CHOP and drove home with Liam and I- he was officially on Gloworm duty for the ride..poor Uncle Ryan. Alex and I were definitely overwhelmed the first few days- there were 15 doses of medicine a day plus 2 shots we had to give him. And the medicines couldn't be given together so our first few days we gave medicine from 8am-noon, then 6pm to 2am. Yawn. It sucked for Liam, we had to wake him up in the middle of the night, give him a direutic and then the little guy would be upset with a wet diaper an hour or two later. No one was sleeping well, including Ike our dog, who has become very protective of his little brother.

After we settled in, things became more bearable. We spent most of the first day home at the doctor's office and then the hospital getting bloodwork drawn. Later, we saw our cardiologist locally. The last few weeks have had ups and downs- medicines have been stopped and started again; one ER visit at 2am on a Monday morning almost became a huge setback and ended up being nothing. Mostly, its been a lot of time in a doctor's office (3-4 times a week) or having a home health nurse visiting to listen to his lungs. The biggest concern for his recovery is making sure no fluid comes back to his lungs. So far, he has done great in that area.

On March 19, we went back to Children's Hospital for his follow up with cardiology and a few other specialities which will follow him. We got another all clear and were able to spend some time seeing the friends we made while we were there. Everyone's kids seem to be doing well which was great to hear. One family was hitting a lot of complications and I would ask all reading this to say a quick prayer for Luke. He and Liam shared a pod area when Liam began going through his major set backs, and his parents were supportive shoulders for us to cry on.

It was a great trip, especially because his doctors who saw him were surprised by how good he looked. We were able to visit and meet new family members that weekend at my Mom's house, Sean and Tommy, Julie and the boys, and Aunt Joan, Uncle Harvey, Carol Ann and John and then at Jeanette's baby shower, we met Cara, Aunt Joan, Craig, Jeanette, Rachel and Nani. Great trip to NJ.

While it was great for him to meet everyone, we stll have to be very careful with him. During his drainage issues, his thymus gland was effected. This gland produces specific cells which fights infections- opportunistic infections (rare ones we all fight but because his defense is down, a common cold would become pneumonia in a short amount of time) So, he is now considered a low immune deficient child. Until those levels get higher, he is on a preventive medicine to fight infections. If he happens to have a fever, we need to rush him to the ER so they can make sure that it isn't anything serious. Luckily, he has shown no signs of this so far but we are also still keeping him very much a bubble boy. If we do go out, he stays in his stroller or only held by us or a close family member after using hand sanitizer. Its just the smart thing to do, especially since its still flu season.

We are finally able to breathe a little bit and enjoy the small things- I took him to his first Gymboree class this week and he did great the first 30 minutes, laughing and playing. His therapist has been by a few times and he is doing pretty well despite having laid on his back for 6 weeks and unable to move. Liam is beginning to hold his neck up for longer periods of time and starting to roll a little bit. In fact, he is pretty strong compared to where he should be.

I'm looking forward to a quick and hand sanitizer filled trip to the Easter Bunny in the next week. We will post that picture soon. I am working on a Liam hospital online photo journal and will share that when its done. There were quite a few days where we didn't post, pictures or updates, and that was simply because we thought we were going to lose him. Looking at the pictures, its amazing we didn't. He is resilient and joins a ton of other babies who fought back. And we couldn't be prouder.

Power of Prayer and Faith

2010-03-05T22:23:00.002-05:00

I met a number of families over the last two months that have meant the world to me- having someone to talk to and understand what you were doing through was the best support anyone could ask for. A few of those families still have surgeries they are facing and long term care for serious conditions. I would ask any of our friends and family to continue to pray for these amazing kids. Here are a few we keep in our daily thoughts and prayers:

R, 2 1/2, waiting for heart transplant, has only lived at CHOP since birth and is the best spirited little girl I have ever met. I can't wait to go visit her soon.
K, about 6, also waiting for heart transplant and R's "big brother".
M, 1 month, discharged before us but waiting for her heart surgery. Her mom and dad have been awesome to us and I'm so happy we still talk.
J, 10 months, has the best parents in the world and is facing a tough and unknown future after having one of the most rare diagonis. We miss the friendship and constantly think of you guys.
J, 2 months, had her second of third surgeries today and has the most beautiful eyes you've ever seen
W, 3 months, surgery on the 18th and another surgery later this summer, you are going to do great little man!
J, 14 years old, just had a heart transplant and is getting used to his new heart. His mom has an amazing strength.

CCU Stay

2010-03-05T21:49:00.003-05:00

Its been some time and I apologize- CCU really allows parents to be parents again. We can take him for walks, do all feeds, diapers. Liam and I went to music class and he stared and cooed at all the older kids. It was adorable! But suffice it to say, it was hard to find time to shower again! We spent a full week in CCU for various reasons but mostly, they wanted to play it safe after the rollercoaster he had had so far. The first few days the focus was on making sure the fluid was completely out and it was up and down every day until about Friday. At one point, we thought we were going to get tubes again and that morning, he woke up with his lungs looking clearer on the xray.

During these first few days, the nurses discovered that his PICC line had become clotted and could only use one access rather than both. Keeping it in meant more of an infection risk but they were hoping they wouldn't need to use much more medicine through the IV and planned to take it out Saturday morning.

On the food front, he had begun eating more and more by mouth and becoming less dependent on the feeding tube. The only time he used it was when he was too tired to wake up to eat, which is normal for him, he tends to get his best sleep overnight versus during the days. He also used it for the medicine, which ended up being quite a bit of meds.

We had a scare on Friday night- he was doing well, excited to see Alex again when he arrived and at 3am, the nurse thought he felt warm. Well, he was. He had spiked up to 103.5. Immediately, our room came to life and they started using the PICC line to begin antibiotics. They also put him in isolation so everyone..but us, was in a mask, robe, slippers, etc. The nurses took blood to test for infections, cultures, etc. It would be 48 hours before we knew about most of the results but the most obvious answer would be the PICC line had been infected. Yes, the same one they were using and had to take out. The biggest fear was it was something viral, especially RSV, which is one of the worst things a kid with heart issues can have and we had been getting him monthly shots against it. However, being in the hospital puts you at such a high risk of getting all of these things.

It was a tense weekend as we waited for results to come back- his fever in the meantime had come down quite a bit and by morning, he was doing much better. Mom and Dad however were exhausted, we never slept. My parents came down for the day and it was just nice to have outside world contact. Liam was looking better- of course the lungs finally looked clear and this fever thing was just another blip on his path. Yay...read sarcasm. On Saturday night, Liam got a roommate and it was one of those, is this a joke moments? The little boy was also a William, about 2 weeks younger than our guy, with the same heart defect who apparently had some type of virus. Nothing like confusing the nurses. His surgery is March 18th and we wish his family the best of luck!

On Sunday, Alex and I took a feeding tube class and a injection class, since one of his meds was a shot we had to draw and give. It was blood thinner too which made it very serious. Later that morning, my Mom came back down and Liam was sleepy because of the antibiotics and being woken up so much. Then my brother Ryan and his friend Zohaib came to visit after spending the weekend at U Del with friends. It was just a nice weekend, I had Alex there, family and things just felt so much more normal. Alex left Sunday night with both of us hoping this would be the week we got to go home.

After Monday morning rounds finished, our nurse came in to give me the update and our wish came pretty quickly- they wanted to discharge him Tuesday! Wow. So I began to pack up things, there was just so much we accumulated during 6 weeks. It was unbelievable. My dad ended up coming down that night and we had dinner, he played with Liam so I could put everything together. It was just moving so quick and I was starting to get a little bit nervous.

By this point, we had gotten another roommate, a little girl. You know when you are at the mall and you see parents just do things that make you want to scoop in and cuddle their child? Try sleeping next to it. It was so hard to hear them and listen to what they would say to their 1 year old, who had so many health problems. And then, here is a little girl with a bad heart who was having a hard time eating, most of these kids do, and they refused to let the nurses give her a feeding tube so she could get nutrition. What do the parents do instead? Put chocolate syrup in her formula and gave her french fries. Really? I was steaming mad that night, I just wanted to take her home with us. I know this is a vent but after going through this and seeing just how precious life can be, especially with kids like Liam, I couldn't feel anything but remorse for that little girl's future. Mom also smokes 2 packs a day but told the doctor she stood away from the little one. The doctors were upset too, and I was impressed by the restraint shown. Its times like that where I wish child services had cameras around. Sigh.

On Tueday, Ryan came down again to drive with me back to DC so Alex didn't need to come up and go right back down. We ended up getting discharged pretty late, around 3pm and hit every traffic known to mankind back home. I kind of wished the helicopter was an option again! It was bittersweet leaving- I found our two favorite doctors to say thank you and goodbye. Dr. Bird was so good to us and Liam lit up when he saw him. It was hard, I had a lump in my throat because I was scared but excited. Its not everyday you almost lose your son, more than once, and you can look into the eyes of the people who literally held his heart in their hands and thank them. If anyone has any ideas of a real thank you present for that, I'm all ears. I'm sitting here trying to figure out how to convey how much their care meant to us.

Will update more on our return to home/normalcy/not normalcy. I know this was a long one, its been a few days since I had time to get online. Love to all!

So long ICU

2010-02-24T10:50:00.004-05:00

I have completely forgotten to blog during this last week, which has seemed like a blur to me. Since I last wrote, Liam has had both chest tubes removed. On Friday, they took out the right and immediately, I held him. For the majority of the day, we just rocked and stared and cooed. It was great.

Over the weekend, his left chest tube slowed quite a bit. Alex came up Friday night after work and when Liam woke up and saw him, he immediately began to smile and then proceed to jabber. I think Alex was given a talking to for leaving! It was unbelievably adorable. He had a good weekend, although the oxygen went off and on all weekend.

On Monday morning, they decided it was time to take the left tube out because it wasn't producing any fluid. This was also after twice during the middle of the night part of the tubing came off and air got into his lungs. So while we were hoping it would stay in just to be sure, it was nice not to worry about the actual tube moving around on us again. However, since this came out, fluid has built up on that side. In the meantime, they are changing his direutics from mouth to IV which seems to be stronger method of getting fluid out.

Since his first dose last night of the IV direutics, the xray did look clearer. We will continue with the IV type until his lung looks dry again and then go back to the oral medicine. I think we will end up coming home with a few medications to treat this over time. Pleural effusions take time to go away but we are at the point where it looks done, as long as we continue to use medicine. Thats exactly what we want.

We were also stepped down yesterday from ICU to the CCU, cardiac care unit. I am a little apprehensive about this but its because it was nice having 1 on 1 nursing and all the attendings became our extended family. If we had a concern, they came right over. In CCU, its for kids who are stable while they wait for a heart transplant or more surgery or those who are waiting to be sent home. Nurses have 3-4 patients and its more of a I need to go grab one to get help. Its good to know they think he is stable enough to be here but at the same time, I don't feel completely comfortable.

Yesterday, he was having some breathing issues because of the fluid and a resident was paged at 5:30. He got there at 7:30. That is a long time to watch your son struggle to breathe. Liam still is having some trouble but doesn't need oxygen. Its just the fluid in his left lung is making his chest\tummy deflate some. He is comfortable otherwise and clinically looks good, but my head goes back to the nightmare we had before where we kept saying his breathing was ok when it looked like this and less than 20 hours later, we were back in ICU and then on a breathing tube. I already warned the resident that I may seem like a bitch but I was not allowing the same situation to happen again. Lucky resident, huh?

So while I am trying to be happy we are in a new unit that brings us closer to home, I am keeping a hawk eye on Liam's chest as he breathes. The other good news is that he is allowed to wear clothes again. He is just about 10 lbs, 4 oz now and the 3 month size fits well. Its nice to see him use some of these adorable clothes he has been given! We rocked the frogie outfit yesterday, today will be a cute blue striped one my parents brought down over the weekend. Little man is spoiled..but he deserves it!

"Liam has proven to be his own man"

2010-02-17T21:21:00.005-05:00

While this picture may not look like progress, it is. One month ago he had his first OHS. 2 weeks ago, he had a second life saving OHS. We are getting closer to home, I can feel it now. There is true progression each day.

So I feel like every time I blog, I jinx Liam's progress. I tend to stay upbeat and positive, because I truly only want positive thoughts, but as soon as I submitted my little Valentine's post, the you know what hit the fan.

I had been playing with him for about an hour on Sunday afternoon after my Mom and Dad went back to NJ after spending the weekend with us.He was getting sleepy, so I picked him up to rock him to sleep. I look down as I stood over the crib and notice his Blake chest tube, which sits in the center of his chest, was hanging quite a bit lower on his legs than normal. I laid him back down and asked the nurse to take a look- thank God. A few minutes later as we waited for the doctor, it began oozing the fluid it was originally collecting inside the tube, meaning the tube definitely had moved in the insertion area on his chest. The suction was still working and the doctor ordered an xray to see if it had moved inside of him.

The way the Blake works is it is one long tube, one end started in the left lung cavity, looped through the center, over to the right lung and then out of his chest. Each area had a small hole where the fluid would collect in the tube and suction out into a bulb at the end, which was what laid on the outside. Well, the xray showed the tube was no longer even in the left side of his chest cavity. The surgical team came to take it out and said the xray also showed that air had been getting in to his lungs through the insertion hole. The doctor said the fluid was not at a significant amount so they did not think they needed to put more tubes in, they were going to take it out in a few days as it was.

But as luck would have it, the big risk of pulling any chest tube out is collapsing a lung and unfortunately, yet another complication added to our list as his right lung collapsed. It was a scary hour for me, because I was sitting down the hall, watching all the flurry of activity and scared that I somehow did this to him. The doctor assured me that the tubes do come out and it wasn't, but I was the one holding him as things went to hell. Because of the lung collapsing, they immediately had me sign consent forms for them to put a different chest tube on his right side to get the air out. There was a small pocket of air on the left but that lung was still stable.

The difficulty at this point was the air being in a tiny space and that both sides would have scarring from the first set of chest tubes. At the end, they only put it in on the right side because the left was too dangerous and the air was not a risk. As soon as the tube was inserted, the air came out and his lung came back up.

I had held it together pretty well for three weeks but this hit me hard- we were so damn close to the end of the road for him and yet, another blip on the radar. I got a lot out of tears out on Sunday..in fact, I think I terrified the doctor who has been with us this entire time. I did ask about prognosis and what next steps were, and one of our two favorite doctors, Dr. Bird, made a pretty funny comment about what most kids would do followed up by, "although I think we all know Liam has proven to be his own man". Happy Valentines Day to me.

Sunday into Monday was one of Liam's worst nights, hospital or home. He screamed most of the night, mostly due to discomfort and that they weren't feeding him. They wanted to wait to Monday morning to make sure the left side did not need a tube, if he did, he had to have an empty stomach. Thankfully, they allowed him to eat..and by bottle! It was the first time in three weeks and he kicked ass. He would eat 2 oz most meals and then full bottles here and there. It was a great relief!

On Tuesday, he woke up working a little bit harder to breath. That morning, we were moved from our private room back to the open pod to allow an older kid to have some privacy. I packed up all of our stuff and by the time I got back to his bedside, the team decided it was time to put in the chest tube on the left side. That side was filling up with fluid that had no where to go. On the right side, it was draining a very small amount. So on Tuesday, he had his 5th chest tube this stay put in.

Going back to 'being his own man', our other favorite doctor, Dr. Naim came to me after the procedure was over with a concerned look which of course, made my heart drop. She told me he was ok but despite the large amount of sedation he had, he never fell asleep. In addition, he watched the entire procedure with much curiosity. Sigh. My 3 month old little man is more intrigued now then scared of having metal instruments placed in him. Not a good sign for my future endeavors as he gets older.

Today was a good day for Liam- he ate for me, 3 oz at a time, played and even smiled at me first thing this morning. I held him for about 5 minutes but he was in pain and we put him back down. We had a bath and a good long nap, something he needed. My dad came down to visit after work and it was nice to see Grandpa playing with Liam again. My mom and grandma are coming tomorrow night, then Alex is back Friday after work. The days actually fly by here. By the time I pump, feed him, take a shower, or grab a bite to eat, the cycle begins again. He is much more awake here than he is at home and we play, read, stare at one another, quite a bit. Hopefully once we get home, he can sleep better in a much more quiet place!

On a sad note, this is a children's hospital with quite a few sick little ones. We have become friends with many parents, some living here full time with their kids waiting for transplants and it hits us, we have it good, despite all of this. I found out this evening that a family was told their little girl might not make it. And throughout the last 24 hours, several kids, including a 10 month old baby of new friends of ours, have been coding. Please just say a quick prayer for all these little innocent kids- its been heartbreaking to watch my own son go through this, much less be of much use for a parent who has it worse. I try to remain positive for my sake and theirs, but I know the power of prayer and faith is strong.

Healthy Heart Day!

2010-02-14T12:41:00.002-05:00

Happy healthy heart day to all! Alex left this morning to head back to work, but shoveling out at home first and giving our amazing neighbors, Dave and Lauren, a break from being adopted dog parents. It will be good for Ike and Penny to have Alex there to spoil them a little.

Liam is doing well, his oxygen came completely off yesterday! He has been keeping his levels up so far and is tolerating it well. He is on full feeds through a feeding tube in his nose of a special formula that is helping with what type of fluid he is draining, however, Liam has been pooping more than he is draining now. His tummy is talking to us quite a bit, he is not happy with this gas issue. Its expected though, its the first time in 3 weeks he has had food in his stomach. Hopefully in a few days, that end of things calms down. Alex hopes so too..since Liam had a blow out on him Thursday night. It was the first time in a long time I laughed until I cried. Even the nurse joined in too.

His draining has turned around so much in the last few days. A week ago, he had between 900-1200 ml out of his chest. Yesterday, just 300 all day. His heart rate has risen a little bit overnight and the doctor seems to think its just because he is getting dry because of the drainage. They increased his fluids for a few hours and that helped his heart rate come back down. He literally is only getting one fluid in other than food, and a little baby Valium, but nothing else. Two weeks ago, he was on over a dozen infusions consistently and had 4 IVs on every hand and foot. My little man has one that is used only a few hours a day and is otherwise, feeling good.

I could ask for nothing else but a healthy heart baby and I got my wish..we are getting closer to getting his chest tube out. Hopefully over the next few days we will see no drainage and they can take it out. Can't wait to rock him to sleep against my chest when that happens. Its his favorite position and its been a while since he was allowed that. I must admit, Liam is going to be one spoiled kid..but he deserved it. Love to all of our friends and family, enjoy today and don't forget, its CHD Awareness Week and Heart Month!

Liam turns 3 months old today!

2010-02-11T17:43:00.003-05:00

No major updates to report- Liam is still draining but its less, and he is peeing more, exactly what the doctors want. He is on full feeds by NG tube through his nose and not much else in terms of drugs, etc, just a few little things. We were moved to a private room in ICU which is pretty nice for him, its quieter and for us, its private. No more moving our things around every day between car and room and Ronald McDonald House. Most important, it means the doctors feel comfortable with not having him in a pod with access to their area.

So for now, its a pure waiting game. We are able to hold him 2-3 times a day and rock him. He has been laughing and smiling, so much, its been a relief to us because its a great sign he is feeling better. Hopefully we aren't looking at more than a few weeks to getting better and home. Fingers crossed!

Its CHD Awareness Week..

2010-02-10T12:09:00.002-05:00

What is a CHD?
by Shannon Arnold Smith

What is a CHD? You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What's a CHD?"

I could quote terminology. ..
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin, Captopril. .. .
It's wondering... Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I need...to help her grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking her sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do her nails look blue?
It's cringing inside... at what she's been through.
It's dozens of call to her pediatrician. ..
(She knows me by name...I'm a mom on a mission)
It's winter's homebound... and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying.. .it's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected.. .
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD

Happy Tears Day

2010-02-09T00:11:00.002-05:00

Short and simple- we held him. It was like holding him the first time after he was born but just a little bit sweeter in some ways. We each spent about 30 minutes rocking him, and he just stared deep into our eyes, even tried to talk to us a little. Each time we kissed him, he would arch an eyebrow or even crack half a smile.

Alex went back to the Ronald McDonald House and at 10:30, I went to say goodnight and the nurse let me sit there and rock him to sleep. Despite all the wires and chest tube, it felt almost normal. When his wound gets better and the tube comes out, he will get to sleep in his favorite position, chest to chest, looking up at us.

And I sat there tonight laughing that I married my half Chinese guy and there is this golden red haired child with big blue eyes and pink skin looking back at me. He is my hero, my own "Braveheart".

nap before the big game

2010-02-07T20:11:00.000-05:00

long day

2010-02-07T19:46:00.002-05:00

Within 12 hours, we went from good news to the bottom of the ladder again back up to a sigh of relief. Its amazing how many ups and downs one can have when it comes to your child.

Good news we began with- there is no significant fluid build up in his lungs and he is peeing more. More pee means less coming out of his chest, which is taking all his nutrients. We are on the right path says the doctor.

Then my parents came down, Mom made cookies again to sweeten the staff up towards Liam, it definitely works.

Bad news mid day-We had noticed a pretty bad bruise on his right arm last week and during the surgery, they used his right wrist for something called the art line, which draws blood from the artery without having to poke him every time. It was actually a godsend since they check labs several times a day. It ended up coming out yesterday, it was quite bloody and I about crumbled when I saw all of the blood all over him. Since it came out, we noticed from the elbow to his fingers were mostly bruised. And his ring and pinkie finger are completely dark. The concern is there might be a cut off of blood to his hand. In addition to all of this, the CPAP on his nose created such a nasal breakdown, it looks like the entire front of his nose has been cut. Its just one freaking thing after another.

They called the plastics fellow, who is from plastic surgery, to take a look. He tells us " I don't think he will lose his hand". Really, is that the bedside manner they teach you? They are going to follow it, ultrasound his arm tomorrow to see if he has any clots causing issues in there. Its just another thing to add on top of it all. With his nose, if it doesn't heal correctly, we may need to do a skin graft about 6 months from now. Seriously, little man is just getting the crap kicked out of him. But the funny thing is, he is being an angel, looking around, showing us a lot of personality.

More bad news which turned out okay- the doctors are getting concerned that the heart isn't the cause of the fluid, which is the main issue he faces right now. The good news is that his heart function looks great, two open heart surgeries later. So of course, we are now at the point of losing it because our son is draining out everything they have given him and they don't know what the cause is. And the doctor we feel best with admitted he is now concerned. So he calls our surgeon who says we just need more time and he thinks it is the original pleural effusions still draining from before his second surgery. That is good news to us and the best news we have had today. If this is something else, it would be heartbreaking. We want this to be treatable and not a big guessing game. As it is, we are going to be here for sometime, in ICU and that's hard enough.

Its been one of those days where we sit here questioning everything, the why of the situation particularly. Less about why us but why Liam, he is so little, pure and just a beautiful little baby. What can be learned through this, there has to be a reason why Liam was chosen. I can't wait to see him grow up and learn why, but these kinds of days are challenging my faith, everything I've always believed in.

Snowy Saturday

2010-02-06T22:32:00.003-05:00

Liam and Glo-worm have developed a weird ET like relationship. It calms him immediately and he can just stare all day at Glo-worm.

Not much to update- his chest xrays this morning looked better than yesterday which is a positive sign. Doctors think we will be here still for a while until he starts to slow up on drainage, which definitely hasn't happened yet, he is draining 600-800ml a day. I'm getting more anxious to actually hold him and feel his skin against mine, and from the looks of it, he is too. Its hard to get the stares, cries and then, the sigh of defeat from the little man. He has a line that feeds directly into the right atrium and as long as he has that, we can't hold him.

He isn't on much right now in terms of meds compared to last week when we didn't know what was happening to him. Liam has developed some small clots so they have him on Heparin to help thin it out. Because of his chest drainage, he is losing proteins, platelets, etc so they are trying to replace those as they come out but other than just plain IV fluids and some Valium for discomfort, he looks better than he did before the second surgery, which gives us hope. At that time, he had 4 IVs and about 12 different meds going in. We are on one IV and one main line now.

We are starting to climb the walls in the are we ever going to leave sense. Its so hard to watch him, losing weight, not the same personality or spunk as he had when we first came. He is definitely going to need to start eating to get back to his chubby wubby status. Hopefully the doctors will let him start feeding sometime over the next few days, he hasn't had a bottle since last Monday. I prefer my baby with little baby fat rolls! Thanks to all for the prayers..we asked the chaplains here to visit with us as well and we will take the love and thoughts from all.

Thursday, 2/4 11am

2010-02-04T11:02:00.001-05:00

Post Op #2

2010-02-04T10:09:00.002-05:00

Liam ended up going down to surgery yesterday first with Dr. Spray. We rolled him down in his bed at 7:30am and I asked the doctor if we could at least kiss his head, since we couldn't hold him this time. My parents kissed him, then Alex and I was allowed to hold his head and kiss him. As soon as I did and whispered a few encouraging words, he began crying so hard and tears were just everywhere, between Liam and his parents and grandparents. It about broke my heart. I snuck his teddy bear in and told the doctor Patton would be watching.

We met with Dr. Spray until about 8:15am and he explained what he thought happened. Where the patch was, basically in the corner of the four chambers, instead of blood flowing across the small hole they left, which is absolutely routine, it was going into the upper chambers instead. He wouldn't know until he went in and saw the heart, but would tell us when he was done.

Our group headed to a lounge area and waited. Our nurse came down at 9:15am and told us that they were already in the chest, which was good news because the surgeons had concern with going through fresh tissue so shortly after the last surgery (they usually wait at least 2 months..this was 2 weeks to the day that they had to go back in). They could see the patch and were about to put him on bypass. A few minutes later, Alex's parents arrived.

We weren't expecting another update to about 10:15 when the nurse came back in about 9:40am and said they were done with the repair and just about to take him off the bypass machine. By 10:30am, we were in the consult room waiting for Dr. Spray. He got there about 10:45a, and basically the original patch had the hole as we know but when the heart expanded, it went from 2 mm to almost 5 mm, tearing across. This was causing the exuberant amount of blood flow into his heart and out into his chest cavity. Poor little man. They reinforced his patch with a particular type of stich and he was on the bypass for only 20 minutes. Dr. Spray was very happy with how surgery went.

It took some time for us to see him but he was out of it most of the day. We had a celebratory lunch at Chipotle, yay, no cafeteria food. Both of our sister's came down in the afternoon to see the little guy. Both sets of parents and Alex's sister headed back while Alex, Heather and I just hung out. I even got Heather to do her homework. Success.

He was awake last night around 9 and just was worming around, dancing, trying to move but he was so sedated I don't think he realized he couldn't move very well. Heather and I went back to the Ronald McDonald House around 10 and played Are you Smarter than a 5th Grader and we are not. Oh well.

Overnight, Liam's temp dropped a little bit so he had a warmer for a little while and the doctor decided to leave the breathing tube in to later this afternoon, allowing him to rest a little bit and take some drugs to fight any anti flammatory issues from having a breathing tube. Heather and I are hanging out in the ICU with the patient, Daddy is working out, showering, getting some normal sense of life back. The doctors are letting Liam take it easy and doing a much slower return to normal, which is perfectly fine with us. Thanks again for all the prayers..just need to get through a solid week or 10 days of good recovery, and then I will breathe again.

Tomorrow

2010-02-02T12:34:00.001-05:00

We will be second tomorrow morning for the surgery, first one is slotted at 7 so Liam will probably go around 10am.

We got to see a video of yesterday's procedure showing us the issue today. When they inject the left side of his heart with dye, the right side should not light up at all or minimally. About half, if not more, lights up, meaning that hole is not tolerable and a stitch may have come loose due to the pressures. This extra blood flow causes all the pressures to rise, which is forcing the lymphnodes to leak and the extra blood is then flooding his lungs- before the surgery, he had 80% flow, and should have 100% now. He is at 400% of blood flow which is why his little body cannot get rid of the fluid or breathe well. All is expected to really instantaneously slow down with this surgery.

OHS #2

2010-02-01T20:30:00.002-05:00

This is not a post we thought we would be writing. The cath showed that the small residual hole they left behind which typically balances out the two chambers has gotten bigger, most likely the patch tore because his pressures were too high. Those pressures are still too high and is causing all the fluid issues and everything else we have seen since Wednesday.

They called our surgeon who is traveling and he thinks Liam is stable to wait until he returns on Wednesday so he can do another open heart surgery to fix the tear. He knows where everything is, why things were done a certain way, etc If something changes between now and then, one of his colleagues will operate immediately.

While this seems like a set back, it is an answer, something we haven't had in almost a week as we have watched our son get worse without cause or knowledge to effectively treat it. Without this procedure, the worst would happen. The risk of not doing the surgery outweighs the risk of the current day to day care. We are both pretty calm and almost excited to see our little guy be himself hopefully by the end of the week. I dread handing him over again but he needs this surgery and I want him to thrive.

Thank God they found the issue and were able to point to something directly and say this needs to be fixed. We were told that would likely not happen. The power of prayer is on our side and that will help us all get through this chapter. Thankfully, only Alex and I will remember this time.

Procedure Scheduled

2010-01-31T20:55:00.003-05:00

At about noon tomorrow, Monday, Liam will have a cardiac catheterization to take accurate readings of the pressures in his heart, veins, etc. Its about a four hour procedure and he will yet again be under general anesthesia. We signed all the consent forms tonight and while we are scared for him, we are very hopeful that this will result in answers. Just pray it won't take a further toll on his body and recovery.

He has taken a beaten the last few days as the doctor told us tonight so we hope this procedure will be the beginning of the answers and a treatment plan. They can't even find a place to draw blood from anymore. When you see your 10 week old's arm covered in bruises that look like a cigar burn, we appreciate those first sleepless nights of our inconsolable newborn more and more. I wish that was the worst of our issues! Apparently, we hit yet another rare column to mark off with the chylothorax complication. We just want Liam to be healthy again and it looks like it will be a timely process to treat the chylothorax after it is determined why he is leaking this fluid.

Both chest tubes are draining a ton of fluid but most of what is coming out now is what they are putting in. I was amazed at the number of IVs and tubes today, well overwhelmed, and recalled that before last Tuesday, he had had only one infant dose of Tylenol for a slight fever before this began! In other news, his original incision from the open heart surgery is basically healed. Little man continues to fight back to the nurses and doctors, love that he tried to pull out his tubes today.

I held him..

2010-01-30T17:48:00.002-05:00

I am going to start this blog with good news. Dr. Maim, who we met when we first arrived, let me hold Liam today, tubes and all. It was a major deal to move him with several doctors there but I held my baby..he was still lying on a foam mattress, so I really held that, but I could kiss his head and talk to him. First time in 4 days. Still feel the weight in my arms an hour later.

Well, the bad news is we still aren't sure what is causing the set back and fluid build up and they think its one of two things. They plan to do another procedure on Monday that will be about 4 hours long, to measure his heart and lung pressures and to truly see how his heart is operating post surgery. It will be catheters through his legs that will take long wires up to his heart and be inserted. Wow science. Basically, when they finished his surgery last week, they left a residual VSD (hole)less than 2mm at the repair patch, which the majority of babies tolerate very well. They typically just close on their own as babies grow but with Liam's set backs, it may need to be fixed if it is showing that this is the issue which is then pushing fluid out into the chest cavity because the right atrium's pressure is too high. There is a chance that he just isn't tolerating it and causing all of this fluid build up in his lungs. If they see this is the cause, they may be able to also fix the repair during this procedure by putting a tiny balloon through the catheter. If they can't do it this way, it will mean another open heart surgery. We are praying for it to be fixed in the catheter procedure so we do not have to traumatize him any further. And his incision has actually healed already, one scar is enough.

In the meantime, he has two chest tubes in now and it is draining a lot of fluid. The left side is a little under 800 ml and the right side is catching up, since it was only put in yesterday morning. He is so tiny, so to think of all that fluid, its unbelievable. They confirmed the fluid coming out is something called chyle, which is lymphatic fluid. Typically, cancer patients have this and cardiac surgery patients. However, his type of repair was not one that would have injured the lymph nodes and the repair was not near the duct that carries chyle so this is really why they are doing the procedure. The team here is unsure of why he would have this fluid, so while they are in there, they will also check the duct that carries it. If it ends up being the duct, this is a long process to treat. We start with his feedings (chyle is the fat fluid your gut makes so food effects the amount of fluid he has). They already started him on prescription formula and once the tubes finish draining, he needs to remain on this for 30 days and then start weaning off it. If the formula doesn't work, there are some medicines but the results are not great, 1 out of 15 it has worked in. The best treatment really is another surgery, similar to a vasectomy, they basically clip that duct off because we don't need the chyle. This is hard to explain so I'm sorry for the confusion. I have a picture the doctor drew but we are limited in scanning!

We hope its one of these two issues because we simply are just waiting for a treatment plan and in the meantime, he is sedated, with tubes coming out of him, and its plain scary. He is stable and that's the best thing but it looks like with either outcome, we will be in ICU for some time. Chyle is very hard to treat and can take weeks to months of treatments if its not repairing of the heart..again. This is heartbreaking for us so we are hoping he does respond well to the plans that come out of Monday's procedure. We will update the blog probably late Monday or on Tuesday, they won't put him under to late afternoon\early evening. We know so many people are praying, please keep my baby in your thoughts. While I am dreading that this might mean several months in the hospital, I just want to take him home healthy.

Patton

2010-01-28T22:35:00.004-05:00

We have officially named Liam's bear that we bought from Fort Myer for him when I was pregnant. "Patton" is closely watching over little man and making sure he is cared for. (Liam was born on Veterans Day, also General Patton's bday 11/11). PS Go Army, Beat Navy- hey Oseguedas.. :o)

Just a quick update as I settle in- he did get a chest tube on his left lung today. They think there is around 300 cc's of fluid in there and expect to drain quite a bit for the next few days which will help his breathing and get him off the ventilator. I just said good night to him and there is already close to 200 out of him since late this afternoon- I take this as a good sign. Its hard to see him this way but its the best thing for him. My new mantra.

The doctors also put a catheter on him to really watch his output, he hasn't peed since this morning and as soon as they did, he gave some. Apparently catheters on little boys jump start things..

I have found one doctor who gives it to me real and he told me again tonight, we are not outside the realm of things they have dealt with and he will be home with us when he is ready. He is also a cute doctor, but I swear, its his confidence in little man that I am drawn too. But seriously, this is not about getting him home, its about getting him healthy in his own time. We are taking it hour by hour and as you can read, we are going through a lot of ups and downs. Its taken a toll on us, physically and emotionally, but we have hope and faith.

I am sleeping at the hospital, on the other side of his floor in what they call sleep rooms. Let me say, its more like a sweat room. My thermostat says 78 and I think my hair is curling for the first time since last summer. I feel better and seeing the light at the end of the tunnel. While this is all invasive, if this works and it is determined that the fluid is the cause of his set back, we are doing exactly what needs to be done. We are in the best place possible with an amazing team of nurses and doctors. I cannot wait to see what Liam does in this world, he certainly is my hero now. And I can't wait to introduce him to all of you.

Cardiac ICU

2010-01-28T10:36:00.003-05:00

I left the hospital at 1am on Tuesday into Wednesday as Liam was being rocked to sleep after some poor feedings and fussiness. By 4 am, the attending doctor called and told me to come back. Liam had a serious episode and was having trouble breathing- something I had mentioned in an earlier post as a concern. I had had 4 doctors during the day Tuesday to look at him but they weren't concerned. Sigh. He was extremely dehydrated and his entire body inside was just unhappy. I wish it was more concerning earlier so it didn't have to had such a result, but it is what it is.

Its now Thursday morning, 8 days post surgery, and he is in ICU, with a breathing tube breathing for him. It seems that this is being caused by fluid in the lungs that just won't leave and not letting him breathe easily. The next step is going to be inserting chest tubes into the lungs to drain the fluid. He is on IV fluids to hydrate him now. Liam was on an aggressive dose of diuretics this entire time and they have taken a toll. They pulled them back on Monday night and within that day, the fluid came back and he was dehydrating more.

This has been gut wrenching to watch, particularly because we've now been given 2 different discharge days and we are suffering set backs so much later in the game then anticipated. We had just began breathing easier, unlike the little man. Alex even went back home on Monday and to call him at 4am on Wednesday, was extremely tough news to break.

The breathing tube is hard to see but it is nice to see him breathing more evenly and not working so hard. The original concern was that his lung collapsed and thankfully, it hasn't. The chest tubes are going to be equally as difficult but like the original surgery, it is what will fix him and that's all I want, my healthy baby boy. Probably the worst thing is I can't hold him..its been 2 days now and I'm pretty emotional. He is sedated for the most part, stirs occasionally. It looks like Liam will be like this for several days and in my heart of hearts, I hope he realizes that we are right here next to him. For all the parents out there, kiss your babies and hug them tight tonight. Its the one thing I want to do and just can't.

Hope Lives Here

2010-01-26T22:07:00.003-05:00

Its been a long day- on the good news front, his lungs are almost clear and he has gone from 3 liters of oxegyn to just 1/4. The hope is to have him off the oxygen by morning if he continues to do well. They have dialed back his diuretics and hopefully, the fluid will continue to drain and no more will build up. He needs to build up his electrodes now that the diuretics have been backed off. Also, Grandma and Grandpa came down from Metuchen to visit, it was a nice dinner break from the cafeteria.

On the concerned front, no eating still. He did 15 ml overnight at each feeding with the nurse but had to do the tube the remainder (85ml/3 hours). When I got here this morning, he was awake and ate for me, two times he had 40 ml by mouth and 45 by tube, but the rest of the day, zip. Doctors think its a matter of time for him to start eating, really when he starts feeling better and more like himself. Ugh.

His breathing\respiratory rate has also increased quite a bit but again, doctors assure me that this is also a result of fluids leaving his body and he is testing his lungs out. Its just hard to see him breath so hard, even in his sleep. They are monitoring this and keeping an eye on him.

Its exactly a week ago Liam and I boarded the helicopter to CHOP and began the journey to a healthy heart. Now, the heart is healthy but so many other things are frightening me. His feeding really concerns me because that was the strongest skill he had developmentally, and I want him to be able to nourish himself. They discussed us maybe going home with feeding tubes. I hope we can avoid that, I truly do. As the motto at CHOP goes, Hope Lives Here.

When we first met the team here, they said the average recovery was 4-7 days post surgery. Tomorrow is 7, so looks like we are going to be here a little bit longer than that. I want him to be healthy before he comes home but I really do miss holding him without wires and cuddling in bed. I think he does too, he is becoming more fussy and I am having a hard time keeping him quiet sometimes. Gloworm is doing a better job keeping him happy right now, as you can see in the picture.

That's all for tonight, need to go get a shower and some sleep. Keep praying for us and we thank you all for the love.

2010-01-25T20:14:00.002-05:00

Little man just wouldn't wake up to eat today, I could only get him to eat twice so it is official, he is back on a feeding tube. I thought those days were over from the NICU but he needs food and my big eater will come back. I feel so bad for him, he was eating 25 oz a day and we couldn't get much more than 1 every few hours. I am hoping its temporary and by morning, he will realize food down the nose is not the same as the throat. Mommy and Daddy are sad tonight for our baby but hopeful it won't last long.

Manic Monday

2010-01-25T15:53:00.003-05:00

Sleeping on my lap instead of eating..he was exhausted!

Liam had a rough night last night..he wouldn't go to sleep until about 5:30am and was just not eating a thing. He has been gagging, throwing up, etc for the last 16 hours. The doctor seems to think that maybe with the fluid he already has in his lungs, he just can't take more down. We are hoping he will go back to the eating champ he is soon, but until then, eat enough to stay hydrated and not lose too much weight. I think we are going to use some medication for reflux now and it will help in the meantime. If he can't, the feeding tube might come into play and I just don't want to do that. It would be like when he was born again and he hated it then.

Despite this set back, his xrays look a ton better and it looks like we will be here a few more days. He is on IV diuretics which are very strong and will be weaned over to oral diuretics so we can give them to him when we are discharged. Once the fluid is out, the doctor feels everything else will come together and we won't be far from home. She doesn't want to send us home until the lungs are clear, and frankly, I'm not leaving until then either.

They also did an echo-cardiogram this morning and the surgeon had mentioned originally a small leak around the patch on his pulmonary valve- very typical in this type of open heart surgery. They saw it again today and while they think it will be tolerable and heal itself, if it doesn't, we may need to do a procedure in 2 months. Its catheter, through the leg, and it basically sends a balloon up to the valve to help open it more. Its a small chance, so we are hoping it will not be needed. If it is, we will head back to CHOP for the procedure because it means another 1-2 days in the hospital.

Lastly, because of all the diuretics and trying to take the fluid out, his electrolytes are really low. I offered Gatorade but apparently, that won't do the trick. They gave him some fluids for the low electrolytes and hopefully, tomorrow, they will come back up. He is definitely drained today, very sleep and hard to wake up.

Thankfully it will be a few more days of this and then we will see the finish line. Taking him home and getting settled in sounds like an amazing dream, I can't wait to see him healthy again.

2010-01-24T21:30:00.003-05:00

The picture above is all the thank yous from the kids who have been to CHOP's cardiac center for surgery, transplants, etc. Once Liam gets a little bigger, we will have to work on his masterpiece too. It gives a lot of hope to see so many kids pieces of art, I tend to stand there and read them when he is sleeping and I take a little walk on the floor. Inspiring.

We are seeing decreases in his fluids which means the lungs are getting clearer and he is getting healthier. The doctor came by around 4pm and said she thinks as the fluids come out, we can turn down the oxygen and by the time he leaves, we may not need a lot of medicines to take home. They have upped his diuretics and it seems to really be working well. The goal is to have him outputting in his diaper more fluid than he takes in and we might be there today.

If all continues well, it could be by the middle of the week they send us back home to recover. We have our fingers crossed he will keep feeling better! He has been cooing, even smiling today, which has been great to see his personality again after the last few days of being pretty out of it. The doctor said the Down Syndrome may play a role in the time it has taken for the meds to really get working but we are just thankful they are working now!

Alex is trying to get Liam to fall asleep now..its like being at home, he just wants to play!

Crisis Diverted

2010-01-23T11:42:00.002-05:00

The surgeon, whose name is Liam Ryan (Liam and my brothers name, good sign!) decided against doing a chest tube after looking at his x-rays. Thank goodness, I really didn't want to see him go under again and have all that pain. So they are continuing his diuretics and they allowed us to feed him about an hour ago. He ate 2 oz in 5 minutes and seemed perturbed he didn't get more, but he was breathing heavily and we don't want to overwork him while he is still having trouble with his lungs.

I just sent Alex back to our room at the Ronald McDonald house to get some sleep and then I'll go later. We both are walking zombies right about now. I'm just impressed we take regular showers even if we don't sleep!

My parents got down here this morning with chocolate chip cookies for the nurses, nothing like good bribery. Aunt Mary came last night and so did Aunt Maureen, Uncle Tim and future wife Morghan. Brian W. came over and took Alex out for a few hours last night which he definitely needed. Hope to do the same tonight when my sister gets here this afternoon. The goal is to have one parent with him and let the other sleep and eat!

Updates

2010-01-23T10:10:00.002-05:00

We have had a couple of ups and downs the last 24 hours. Initially, yesterday morning he looked good and they told us we would be discharged on Monday. At the time, two things concerned him- fluid on the lungs and low blood platelets, both common after OHS. His diuretics were increased to help him pee out the fluid during the day. Liam's breathing was a little shallow because of the fluid but stable./

Then Liam's shallow breathing became worse and eventually at midnight, chest x rays were done, increased diuretics and an additional type of them, and no more bottle feeding enforced. We are still waiting on word of what the next step will be but unfortunately, its a possibility of getting a chest tube surgically put in to get the fluid out of his lungs. His xray this morning seems to have gotten better but the decision is up to the surgical team and not the attending physicians. They will be doing rounds soon and hopefully once that is over, we will know more for his treatment.

For now, Liam is sleeping, a little fussy probably because I'm sure he'd like to eat and he is due for more pain meds as well. We are just anxiously awaiting for the game plan. Let's hope he starts going to the bathroom more so he can breath better, its tough watching him to struggle. Something that we take for granted, breathing in air.

Post Op Pictures

2010-01-22T17:41:00.002-05:00

Post Op so far

2010-01-21T15:27:00.002-05:00

Since coming out of surgery yesterday, Liam has been amazing with his recovery. We actually left after we first saw him to get lunch late yesterday. Mostly because he was completely out and still under, but he was moaning this awful sound. I couldn't handle seeing him in pain and not allowed to touch him, even to soothe him. Also, we couldn't talk because if he heard us and wanted us, he may have gotten upset because we just simply couldn't hold him. My parents, Alex's dad and Alex and I ended up grabbing a bite to eat across the street. Then Joe went home and my parents and Alex and I headed over to check into the Ronald McDonald house. Its truly an amazing place and I can't say enough about them.

We left for only about 2 hours and when we were back, nothing had changed. We stayed until about 10pm just sitting by his bedside reading, going out to the waiting area to call family, etc. The last 2 hours before leaving was tough because they had a drop in his blood pressure. Now, the interesting thing is that all of his pre-surgery vitals were never healthy vitals, so the blood pressure change could have just been what his true BP would sit at. The doctors said that sometimes BP will drop when they are sedated too much so they actually turned off the sedation completely. The nurses kept telling us to leave and get some sleep because he wouldn't be out of it until tomorrow, Thursday and he would need us then and it would be a rough few days. So we decided to leave, grabbed a bite to eat at the RMH and went to sleep. We literally just passed out.

I woke up early today to head over to pump and see Liam. So overnight, he surprised everyone at CICU. First, he woke up 10 minutes after we left demanding food. Most kids don't eat that soon but he is our chunky monkey. And then, I guess he fell back asleep but at some point, woke up fussing. When we got in, all of the toys we had packed in a bookbag were strewn all over his crib. They were trying to entertain him and calm him down. He apparently was not entertained so decided to instead pull out the art line. Whats that? Oh, the wire directly inserted into an artery. Thats my boy...

He ended up eating right before I got there so he was fast asleep. The doctor came over to me right away and said she had news, so of course, I'm having a slight freak out internally. Turns out, he did so well, they were removing all the tubes, including the chest tube that drains the blood. Then they were kicking him out, no more ICU. Most kids tend to go to the step down 2-3 days after surgery and they moved him at 10am, 20 hours after it. Pretty amazing, I am still in shock as I write this 6 hours later.

We were moved down the hall and now have a new nurse, who watches 2 kids instead of 1 on 1. The real difference is in ICU, the nurse is bedside while ours is moving around doing stuff. He only gets vitals every 4 hours rather than every 1 hour. Liam's heart rate and sat levels are constantly monitored though.

He woke up around noon and ate a little bit from us. It was nice to feed him, and really, just touch him. It was only holding his head up a little bit but its something. He was staring so intently at Alex while I fed him, I think he is trying to figure out what is going on. Liam must be so confused and probably pissed at us! He hasn't eaten very much, but he is eating which is great.

Alex's parents arrived around 2:30 to check in and say hi. The three of them are downstairs having lunch and I'm waiting for Alex to head back up so I can go eat. Its amazing how hungry you can be after feeling the relief that your little guy will be ok. Liam is sleeping, mostly quiet with a few sighs and grunts here and there. Strong kid, must come from good stock.

Well, March 5th is no longer the date.

2010-01-21T12:02:00.004-05:00

A lot has happened in 48 hours- we went to the pediatrician on Tuesday to get his RSV shot. While we were there, Liam's color looked off and they could not get a good pulse ox reading. Our pediatrician called CHOP and it was determined that we needed to get admitted to the nearest ER and get transported to Philly to be monitored. It was everyone's opinions that the change of color was spells, which could result in a number of issues including death. This began at noon on Tuesday.

Alex left work and met me at the ER. I ran home, packed bags and we had a friend come get the dogs over to PetSmart. Our neighbors came and got Alex's car from the hospital so we didn't have to leave it there. About 7pm, still in the ER, CHOP called and said they were going to take Liam by helicopter. I was a little concerned but at this point, I had the worst scenarios running through my head and didn't know what to do, but I said I wouldn't leave his side. Alex jumped on the road up to Philly so he could meet us there. My parents already had arrived and were waiting for us.

The helicopter came to our local ER around 10pm. They took vitals and packed us up. Liam was not happy, wanted to eat so we fed him a little before getting on board and they gave him something to calm him down. As soon as we got near the "hot" chopper, he shut up and was wide eyed staring at it and the noise it made. We took off and he stayed awake the entire ride, which the flight crew told me was a first. He just started at all the equipment while I held onto his teddy bear. Check out helpicopter from my bucket list- wish it was different circumstances.

We made it up to CHOP in an hour and were immediately brought to the cardiac ICU, CICU. We met the head of CICU, they did some evaluations and got him on monitors immediately. They then called our surgeon and cardiologist here at CHOP. The team decided to get Liam on the surgeons schedule later that morning. So, we really did not want to go through an emergency situation but so thankful that we were in the right place with the surgeon we chose.

I stayed with him while Alex slept in a parent room for a few hours and then we switched off for a little bit. My parents went back to the hotel to try to get some rest too. At about 6am, the surgical teams arrived and we learned he would be second of 5 surgeries by Dr. Spray that day. Talk about a busy calendar for one man..jeesh. We were able to feed him at 8am for the last time, breastmilk only because its considered a clear liquid. By the time the anesthesia team came to his room, he was starving and a little peeved at 10:30.

My parents, Alex and I walked him down to the OR and as my dad put it, its like walking the gauntlet. I held him in my arms the entire way and tried to keep him calm. Its the hardest thing imaginable to hand your son over to have him operated on, much less have his chest cracked open and his heart taken out of his body. I tried to hold it together but when he started screaming when they took him, I had to cry. It didn't last long but watching him leave was hard.

As the team began prepping him for surgery, we were led upstairs to meet with the surgeon, Dr. Spray, who we now refer to as God. It was a quick meeting, he told us it would be about 3 hours at the least, reassured us on the repair, etc. I just wanted Liam to be done so we said what I imagine is normal, thank you and take care of him. Of course, my mom says, by the way, he is my only grandchild...Oh my. This was about noon at this point.

We were led back to a waiting area and Alex's dad had arrived. The 5 of us sat trying to just make small conversation. Our nurse was going to check in at 1pm with an update on his status. At 12:45pm, she came in out of breath and said they already finished the repair and they had moved unbelievably fast. It was surprising and great news- the less time on a bypass machine means less potential developmental issues. At this point, they still had to take him off the heart lung machine, which is the biggest risk of the surgery.

So we were very surprised when she came running in again and said they were done. At 1:20pm. They were able to do the surgery in one hour and twenty minutes, and he was only on the bypass machine for 32 minutes. We were in shock and obviously relieved that his heart was beating on its own again. Dr. Spray was with Liam still and would come visit with us after he felt Liam was stable and safe back in ICU. When he came in, he said it went perfect, no surprises, easy repair for an open heart. So this time, instead of threatening him, Grandma professed her love..How do you thank the man who saves your sons life? A card seems like nothing and gifts seem ridiculous. The gift he has is unbelievable. And the fact he had 3 surgeries to go still, unbelievable.

Alex and I were brought back to see him about 3pm. He looked better than I imagined. He didn't have any breathing tubes in him, he was breathing on his own since surgery and while he had a lot of wires and tubes, he seemed ok. The worst part of it was his moaning, he just sounded so sad and out of it. His eyes were closed and he was just moaning out loud, very hoarse sounding. His complexion, as we joked later was no longer what it was before. Very white, pink pink cheeks, just like Mommy. His sat levels, which were 80's before and on Tuesday, 60-70's, was 100. Just like that. Fixed.

A lot more to come, but my little man is about to wake up for the first time and we are going to feed him for our first time. Its about Thursday at noon. To think this started two days ago, I left the house for a simple shot in sweats and no purse! Amazing.

My little chubby wubby.

2010-01-07T16:19:00.004-05:00

An older picture but it definitely shows us how much he has grown and changed since November 11th- and how healthy he is and how much of a fighter!

We had our 2 month vaccines today- he did well but has been a mamma's boy all day. This is my quick break before he gets up again. Poor little man, I feel so bad for him. They jab the needles in there and its a huge shock, he didn't see it coming!

In addition to the vaccines, we did our weight check and he is up to 8lbs, 11 oz! Its so amazing to see him start filling out. He is also about 21 inches and 1/4.

Everything else looked fine but we had problems with the pulse ox machine today. His numbers previously have always been 84+. Last time he was very high (for him) with 88-92. Today, the machine was all over, 70s to low 80s. At one point, it did hit 89 but it was obvious it wasn't staying up there. Its worrisome too because he wasn't blue at all or turning colors with the lower number.

What this means is that if the numbers stay this low, his surgery will be moved up to this month most likely. I had some tears but held them in when the doctor called CHOP and spoke to the surgeon and cardiologist there. To monitor this, for the next week, we are having a home health nurse visit our house daily to check his levels. We have a follow up next Thursday to discuss them and probably conference in CHOP again. The good thing is we have a cardiologist appointment already scheduled for Tuesday so we are hoping he can do another sonogram and see what's going on, if the pulmonary valve has worsened or it was just a bad couple of hours.

I hope for the latter but at the end of the day, the surgery, no matter how scary and awful it will be for Alex and I, or how painful it might be for Liam, will put our minds at ease and provide him with a healthy heart. Looking forward to the day where we don't need to check his coloring and continuously monitor him. I'd like him to be just a regular little boy and play baseball in a few years! Keep us in your prayers, and let's hope he at least maintains his numbers. We want to do a scheduled surgery and not emergency. God bless.

Checking In

2010-01-06T09:31:00.003-05:00

Sorry for the lack of posts- we have been enjoying the holidays and now, trying to clean up the holidays. So much harder with little man wanting to be held! We have had a few follow up appointments on other issues that have come up outside of the heart defect and thankfully, all has gone well.

No surgery needed for the undescended ball- God, he is going to hate me when he knows I wrote about this. And it looks like his bellybutton hernia is quite normal and it should close up over the next 3 years. It is unlikely it will need surgery but if it hasn't closed, we will bring him back for a follow up then. Phew- a little less stress. We have gone from one major surgery and two smaller ones, to just the one.

We also met with the Fairfax County Early Intervention Services and did Liam's assessment. Of course, he was awake all afternoon and as soon as I took him out of his car seat and Alex and I walked into the child center, he crashes. Ugh! He needed to be awake so we held him while we were interviewed by the therapists and discussed his daily life, milestones so far, etc. When he began to stir, the occupational therapist spent some time checking his tone, social skills, sucking motion, etc. He ended up being more alert and thank goodness- his assessment went beautifully.

They too agreed like the therapist in the NICU that the only reason he was admitted into the program was based on the Trisomy 21 diagnosis and not his ability. In fact, at 6 weeks old, he was operating at a non DS baby at 2 months. They worked out a milestone plan, taking into account his surgery which will push him back. We will have an occupational therapist come twice a month for now to teach us how to integrate particular routines that will help his development. It turns out his muscle tone is good and not as low as some DS babies and because of his good oral motion, he should develop quite well.

On his plan, they see him keeping up with non DS children at all milestones, which was a relief to us. He is expected to be talking by next fall, taking his first steps by next Christmas. Its funny, he coos quite a bit and is very social they noted. See, all these years of being told I talk too much has paid off- my son inherited it and its going to help him.

We have the 2 month vaccines tomorrow and a weight check for the first time in over 2 weeks. Fingers crossed he did well!

Surgery Date Set

2009-12-31T13:45:00.002-05:00

Got the call from CHOP- we are scheduled for March 5th. We need to be there early on March 4th for a pre-visit where they run a number of tests to make sure he is 100% healthy for surgery and then they tell us the time for the surgery the following day. I am slightly freaking out already, it is going to be here so quick. But that also means he is going to be healthy that soon too. What a way to ring in the New Year- not what we imagined when we first became pregnant! We are staying in, making a nice dinner and I am putting Jersey Shore on, despite Alex's protests. Liam likes it :o)

Santa!

2009-12-23T21:57:00.002-05:00

One Month Old Pics

2009-12-22T21:55:00.000-05:00

Christmas Weight Gain

2009-12-22T21:43:00.003-05:00

A quick update- had Liam's pediatrician appointment yesterday and it couldn't have gone better. He gained 11 ounces in a week- dear Lord- and is now 7 lbs, 9 oz. That also moves him up on the growth chart to the 25% line. It will mean he will probably be about 10 and a half pounds at the time of his surgery. His oxygen levels were great, 88-92. The doctor was so impressed with him yesterday she gave us 2 weeks off! The next appointment we have is his 2 month check up/vaccines and then as long as he has steady weight gain of 4 oz a week over the next two, we probably don't need to come in very much at all! Liam hits the 6 week mark tomorrow which means I can begin taking him out, occasionally, not a lot. We still need to keep him home for the most part until surgery but the first 6 weeks were the most dangerous of getting infections and he is doing well, with the occasional congested nose. Head's up, Fair Oaks Santa, we will be the first people in line tomorrow!

We talked about his post op care and that too is a lot better than what we had thought. Once we are discharged from CHOP, we will need to do a follow up with our cardiologist about a week later. Our cardiologist will monitor Liam, particularly based on the medications he will be on. Once that piece of it is over, perhaps a few weeks of care, we won't need to see the cardiologist except every 4-6 months. The pediatrician will make sure his wound heals well and then it will only be his normal well visits. So by April, we can be a normal infant schedule and as soon as his wound his healed, he will be like every other almost 6 month old. So excited! It will be a Merry Christmas and New Year indeed...

2009-12-19T17:24:00.000-05:00

Four generations- Great Grandma, Grandma, Mommy and Liam, before going to the appointments at CHOP

2009-12-19T17:23:00.000-05:00

Pictures from CHOP Trip

2009-12-19T15:59:00.004-05:00

Daddy and Liam in one of the play areas at Ronald McDonald House

If it can be done, it can be done here.

2009-12-17T13:24:00.004-05:00

We will upload pictures later but wanted to give everyone an update from our recent trip to Philadelphia.

Our trip was a success- first, little man travels like a champ and was an angel the entire time. We got to the Ronald McDonald House about 7pm on Tuesday night. Its an amazing place. The original home is from the 1800's and belonged to the owner of the Philadelphia Inquirer. We pulled up and were blown away by the holiday spirit- the Christmas lights sparkled across the entire property, Ronald's statue was waving at us and it just looked like a happy place. We were checked in and given a tour. They have so many play rooms, one is a dress up area with puppets. We let Liam play and will upload that picture. The teen arcade was near our room (Ms. PacMan-woot!), there is also a gym, media areas, library, business center, etc. They have a kitchen where volunteers come nightly and make a home cooked meal for the families staying. We got there as they were cleaning up but were able to have a plate of warm food before settling in for the night. Very much appreciated. It was tough looking at the other children there. Liam was by far the youngest there. Alex put it best when we saw a little boy at dinner, he obviously was doing rounds of chemo, had no hair, etc- kids should never have to go through this pain. He was sitting at a table with his Mom eating a Lunchable, like any other 5 year old little boy. I'm thankful Liam won't remember this part of his life, other than knowing what the scar on his chest is from.

We got up very early on Wednesday and headed to CHOP, which is about a mile from the RMH. My mom came down and brought my grandmother- Liam got to meet his great grandma. It was so nice to see her hold him and have a chance to meet her first great grandchild. We all had breakfast before heading upstairs to the clinic. The clinic consisted of a consultation with a cardiologist, an ultrasound of his heart and sitting down with the surgeon. The entire team was very professional, with the cardiologist walking us through care leading up to surgery and afterwards. She suggested the 4-5 month time frame but made it clear that he could start having "spells" at 4 months. We both want to avoid him having any spells at all to save him from having any pain, set back, etc. Spells are when infants turn purplish blue and sometimes pass out. Its not something we felt we could also deal with very well. Because of this information, we decided to schedule the surgery right before the 4 month mark allowing him to grow as much as possible.

The echocardiagram was interesting. Apparently most infants sleep through it and just lay there. Well...Liam was wide awake, going number 2, kicking, pulling off the EKG wires..enough so, that the technician got "sweets" to help calm him down. My mom was offended since the package said it was to soothe distressed infants. He wasn't distressed, he just wanted to play! The results of the sonogram were good though- nothing has changed and it was a textbook case of tetralogy, although it sounds like his pulmonary valve is very tiny and will need a patch during surgery, rather than just widening it.

From here, Katie who has been coordinating our care and has been amazing to work with, took us on a tour of the CICU and surgical center. The blog title is the first thing I noticed when walking into the surgery waiting area. Can that be a better quote to read? She walked us down the hallway where we will hold Liam and walk him to the surgical table and hand him over. I would be lying if I didn't say I was tearing up and trying to hold it together. I felt very lightheaded just imagining that morning. We were able to see the recovery area and where he as an infant would be. I am able to sleep and stay with him the entire time during his stay which made me feel some relief. They have a few parent rooms like the RMH for parents to eat, get online, even a pumping room for Mom's. We then saw the step down unit, where he would go after the chest tubes are removed and he is downgraded from ICU. Hopefully that will happen within 2 days. Overall, he will most likely be there for a full week. The only high risk he has going into surgery is the Down syndrome.

We then met Dr. Spray. I have spent a lot of time reading and researching, had a long list of questions to ask and had told myself I would make very clear my concerns for Liam. Whatever happened to that steel resolve, I don't know because as soon as we sat down with him, I forgot it all. During the earlier sonogram, the technician told us that Dr. Spray was one of the 3 top world surgeons. I think that may have scared me a little and put me more in awe with him, and the fact that we were going to talk to him. In fact, it was delayed because he was in surgery and his assistant told us, he would not be up until the baby was comfortable and he had spent time with the family. That alone impressed me. I want nothing more to hear how Liam's surgery went and what Dr. Spray would see- so that he refuses to leave until the family is calm and informed, what a great bedside manner.

Dr. Spray does 50-60 surgeries like Liam's a year and he came in with a good air of confidence about Liam, his future and what he needed to do to repair him. The only question I asked was the one I think most parent's probably have- what is the mortality rate? He said in general, it is 1% but that is when infections occur, when something odd happens and it is extremely rare. He said there was also a small chance of a future surgery if he was unable to do a total repair, which he did not think would be an issue and this is the only time I made myself hopefully clear. I replied that if he needed to go back in, I can handle that but at the end of the day, I want my son alive. I know the man knows this but this is my baby, not just a patient and the good thing, I think he got that. He was compassionate, more so than I expected. He put us all at ease because we barely said anything. Probably the most important thing we heard was we were lucky- Liam was born with the right parts in the right place, they just need a tune up. Many kids aren't this lucky with congenital heart defects. This was a straightforward repair. It is still open heart surgery but hopefully they can do the open heart piece in only 30 minutes- and that's the key to recovery. The quicker they repair, the less time on any machines.

After we met with him, Katie did tell us that Dr. Spray hadn't lost a patient in 2 years for this surgery, which was a great relief to hear. Another question we were worried about was that many kids have to relearn all that they knew after the surgery. Our biggest concern was eating since that is the core of his strength, both for him to maintain and gain weight but also for his Down syndrome therapy. She reassured us that isn't so and they have not found that in their surgeries.

We spent about 6 hours there and we probably won't be back until Liam goes in for surgery. There is a chance he will go earlier if his oxygen levels begin to dip but we are hoping March is the time. After we finished the clinic, the five of us went across the street for lunch and met Brian, Mary and their daughter Abby. Brian and Alex have been friends since childhood and Mary has known Alex since high school I believe. Abby really is one of the cutest little girls- we haven't seen her since her baptism, Alex is her godfather and she has grown so much. She is a little person now, not a baby. Brian works with a lot of DS children and even TOF children for therapy, which is a great resource for us to utilize. It was nice to catch up and talk, although it was way too short.

We all parted ways around 3 and headed home. It took us about 5 hours to get home, we just hit horrendous traffic in MD because a car blocked 95. Yay. But we are home and we feel that this is the right place for Liam to get his surgery done. The team and the facility are amazing. I've never been to a children's hospital and just the decorations and colors, it blew me away. It wasn't a cold place at all and that made me feel good for Liam. He deserves the best and we want this to be the only open heart surgery he needs to go through. I think we can do that at CHOP and get us back to a normal lifestyle. No more checking his breathing constantly and his color, several appointments a week, not being able to let him cry, etc.

After his recovery, the restrictions are going to lift and we are going to finally be able to take him out to the store and to the park. That seems silly but I am a proud mom and I can't wait to show him off and just do the everyday errands with him. Its going to be awesome- the little things are exactly what matters. Its been so hard not showing him the world but I can't wait to throw a huge party for him when this is all done. So pony rides and moon bounces, here we come!

Road Trip

2009-12-14T15:42:00.000-05:00

Picture is from today..I finally found a winter hat that will stay on. Liam has been taking his impersonation of Maggie from the Simpsons very seriously with the pacifier and if we lose this one, I'm in deep trouble.

It is sad but I am counting our trip to Children's Hospital of Philadelphia as a road trip because its very likely going to be the only one we go on for awhile. I even bought junk food for Alex and I for that whole 2.5 hour drive!

I am starting to pack and put things together for our visit, Alex and I are basically bringing an outfit and overnight stuff. Liam however needs a lot more so I am pulling it all together and checking my list. Also trying to find an outfit for myself to wear because not a lot fits that doesn't scream pregnant lady. I have been living in sweats and two pairs of stretchy pants and I was hoping to wear something with a waistband but I think that will still be a while, especially since I am on a no exercise restriction. Boo. Guess I'm going to be very un-Heidi Klum like and will be wearing prego clothes.

We made a request at Ronald McDonald House in Philly, but we won't find out until the day of arrival if they have room. We will be most likely staying there during Liam's CHOP surgery and recovery period. They have a great rule of once you check in, they don't kick you out unless your child is discharged and sent home. So next time you visit the golden arches and order yourself a number 10, my pregnancy favorite, add some change to the Ronald McDonald jars. We just found our new charity of choice.

My mom is going to meet us at the hospital and my grandma too- she hasn't met Liam yet and it is her first great grandchild. She can't come to the clinic with us but she said her usual line of I'm fine..hah. Hoping we will also get a chance to visit with Brian, one of Alex's good friends who also does physical therapy on babies very much like Liam. It would be great to get his opinion and just to see him, Mary and Liam's girlfriend, Abby.

In addition to preparing for the visit and clinic on Wednesday, Liam had another weigh in today and is up to 6lbs, 14 oz. His estimated birth weight was 6lbs, 13 oz so a month later, he is there. Sigh. Great news that his oxygen levels were higher than his normal at 91..it was great to hear. Doctor thinks he is doing wonderful and we will weigh in again next week.

We will check in after Philly and hopefully have more news on surgery dates and expectations. Say some prayers for the little man.

Pediatrician Update

2009-12-08T17:59:00.000-05:00

We had another successful visit today with Dr. Chung, who we really have taken to. Liam is up to 6 lbs, 8 oz. When he was born, he was 5 lbs, 6 oz but had dropped to 5 lbs, 2 oz over his first few days. When we left the NICU on November 20th, he was back up to his birth weight. He was originally charted at 12% growth percentile on a Down syndrome chart and is now up to the 20% percentile. He won't be "allowed" to gain too much between now and the surgery or move to another percentile because retaining too much fluid is harmful with open heart surgery. But if we stay on track for surgery in March, he should be just about 10 lbs. Keeping our fingers crossed!

The other key weekly check we do with Dr. Chung was to have his oxygen saturation levels checked and they are consistently in the mid 80s. Most babies are at 97-100 but because of his particular heart condition, he should be 80 or higher. If this number begins to get lower than this, it will be go time for the surgery. It measures the amount of oxygenated blood being pushed out to his body- all adults are typically 94 and up according to the cardiologist.

We have learned some tricks to monitor him at home without an actual electronic monitor- if he begins getting purple in the face (when not pooping because when he goes, he is a little old man who grunts and scrunches, funniest thing ever, all he needs is the paper to read). The blue/purple color means his levels have dropped. We are supposed to take his legs, bend them and push them towards his middle which helps bring the levels up. Also, raising him up so he is sitting or on our shoulder as if he is burping is supposed to bring those levels back up. However, most "tet" babies do not have blue spells until they are about 8 months old. We haven't seen one yet and hope that continues!

In the not so great news but minimally concerned compared to the rest of his health, little man looks to have a bellybutton hernia and apparently, his left testicle has not descended yet. Some babies take about a year to drop. These might need surgical repair as well and we are making appointments to meet with those specialists. Poor thing, he just isn't getting an easy start but with a repaired heart, he will do great.

Since being released from the NICU on November 20th, we have now had 8 appointments with various doctors. Liam's fantasy team as I refer to it includes pediatrician, cardiologist, geneticist, soon to be surgical team, urologist and another surgeon re: hernia. He also will be meeting with early intervention specialists which includes a speech therapist, occupational therapist and physical therapist. He has been a gem at the doctor's so far and only seems to mind having his blood taken or temperature taken from you know where..as as his official general manager, I see a pennant in the near future much like the Yankees.

Links

2009-12-05T19:08:00.001-05:00

Here are some of the best links we have found in our research if you want to learn more:

http://en.wikipedia.org/wiki/Tetralogy_of_Fallot

Liam has the first three issues listed here.

http://www.chop.edu/service/cardiac-center/our-services/fetal-heart-program.html

CHOP is #2 in the country, we will be visiting them in 2 weeks.

http://health.usnews.com/health/best-hospitals/childrens-hospitals/heart-and-heart-surgery-hospital-rankings/

http://www.dsanv.org/

http://www.chop.edu/healthinfo/tetralogy-of-fallot.html

http://www.littlehearts.org/

http://www.sciencedaily.com/releases/2007/12/071217092926.htm

And this last one is special to us- another little boy just had the same surgery Liam needs this week. His parents have done an amazing job blogging and inspired ours. Since Liam is a bubble boy until after surgery and can't meet our family and friends, we thought this was a good way to introduce him to the world. Please read about Noah- his surgery is with the same surgeon we are considering at CHOP.

http://noah-and-his-heart.blogspot.com/

NICU Stay

2009-12-05T18:58:00.001-05:00

The picture is Alex changing his first dirty diaper.

Liam stayed a total of 11 days in the NICU and was discharged on November 20th, just in time for Thanksgiving. He was a little impatient, like Mommy and wanted to leave earlier.

The biggest obstacle was teaching him how to eat. He had a feeding tube but after the first few days, no longer needed to use it. So he decided to rip it out himself. Twice. The nurses kept telling us he was one of the feistier guys they had.

Then after he began eating, they began to slow down the fluids for his IV and completely turn the fluids off. Well, he decided to rip that out of himself as well. Sigh.

The circumcision was probably the worst thing we experienced at the hospital. Oops, they forgot to give him topical anesthetic or sweets, sugar water helps numb their pain level. My little man is a strong kid, he just wanted to get the hell out of dodge after that one.

Alex and I decided he should save his time off for the surgery and go back to work immediately. He would drop me off every morning around 8am at the hospital and he would come to NICU immediately after work, about 6pm. We then left every night around 11pm. It was a lot of long days but we both learned a ton from the NICU staff and the nurses there are angels. I cannot say enough about how wonderful they treated Liam and Mommy, especially because I probably asked a ton of questions and took over like a Mama Bear. It gave me time to call around the country and learn more about his surgery, more than I would have at home as I have learned since.

NICU is one of the tougher obstacles I've endured and any parent who has seen their child hooked up to machines, in incubators, uncomfortable and inconsolable, I have the most respect in the world for you. Liam was not in terrible shape and we learned we could be in a worse place. Again, unbelievably thankful for the little man and the Big one watching over us.

Diagnosis

2009-12-05T18:21:00.001-05:00

Statistics was one of my favorite classes- I loved being able to rely on the numbers when looking at elections or opinion polls. So let's take a look at the statistics.

At 13 weeks, I did a test called nuchal transluceny. It tests for two things- chromosomal issues with the baby such as DiGeorge or Down syndrome. It also tests for any major heart conditions. We left with a 1 in 50,000 chance for Down as we were told and no heart issues detected. It is 99.5% accurate. The test was done at a specialist in the INOVA system here in Virginia. (Alex first quipped..well someone's gotta be that .5%. Oh indeed.)

From the first trimester forward, I had an ultrasound done almost every 2 weeks and then every week starting in the third trimester. I think all together, at least 20 scans. I additionally did scans at two different high risk specialists at two different hospitals, several times. Why all the scans? Because of my diabetes, the biggest concern was to make sure the baby did not get too big. Towards the end of the pregnancy, 34 weeks, Liam's cord pressure began acting up which got me sent to the specialist several times as well. From 16 weeks forward, his diagnosis would have been visible on every ultrasound. Additionally, those cord pressure issues were directly related to his diagnosis and was missed by 2 different hospitals.

So, the actual roller coaster. When the NICU doctor walked in a mere 8 hours after we had delivered Liam, we were told that his oxygen levels were back to a good place and he no longer needed to be on it. My immediate reaction was to ask if we could bring him back to our room. He shook his head no.

Then, with a half smile on this face, he said " I also wanted to let you know that your son has a strong heart murmur and it's possible it may need surgery to fix it, depending on what a cardiologist can find. Oh, and we are pretty confident he has Down syndrome."

I was holding Liam and all I could do was stare at him. He was small, 2 lbs smaller than what was seen on the last ultrasound 24 hours before we delivered, but he seemed healthy and in fact, was moving a bit and looking around already. I began to cry and couldn't stop. I was scared of both diagnosis' to be honest and it's not meant to be offensive to anyone with or raising a child with Down syndrome. I know the dedication and the lifetime commitment it takes- my uncle has Down syndrome and my grandmother and aunts have all treated him like a king and put him first. It was never easy and I just didn't think it was a strength we had at that point.

Alex and I went back to my room when Liam was going back in the incubator to sleep. We were emotional but we also tried to make a deal with God- can we just have 1 and not both? Both together seemed so damn overwhelming. It then took 12 hours for a cardiologist to visit Liam and run his tests, do an echo on him, etc. It was one of the longest days of our lives. In the meantime, I had asked Alex to call my Mom because I didn't know what else to do. I also knew I couldn't tell her myself without breaking down. She immediately left her office 4 hours away and drove to the hospital. I spent most of that time that day blaming myself, and the next week or so after wards doing the same. I am now tearing up writing this because in hindsight, I was in a dark place inside my head and heart, but I know so much more now.

The cardiologist confirmed that Liam had two heart defects, comprising of up to 6 repairs. He would need serious open heart surgery, perhaps immediately depending if he remained stable. If he was stable, it could be 6 months at the maximum. The doctors took blood and the Down results wouldn't be back for several days, perhaps up to a week.

Thankfully, since the original diagnosis, the three top pediatric heart surgeons in the country and another cardiologist confirmed it is only one major heart defect, bringing the repair total down to 3 issues. While this still means open heart surgery, it was a less difficult and tricky one as we have been reassured. More on the surgery in future posts.

Liam does have Down syndrome but to be honest, our main concern and focus is the heart surgery. There is so much advancement in raising and helping children thrive with Down syndrome it has been pushed to the back of our minds in some sense. We have already talked and met with a geneticist, who confirmed it was not because either one of us were carriers and that makes it easier for us to think of providing Liam with siblings down the road. Our main focus for the next year will be getting him through surgery and recovery.

More statistics to share that we have learned over the last 3 weeks.

We had a average risk of my maternal age of 1 out of 700 for Down syndrome.

1 out of 100 babies are born with a heart defect.

Liam officially has tetralogy of fallot, and it occurs between the 5-8th week of pregnancy when the heart develops. Like Down syndrome, it is sporadic and no links to us or genes.

Tetralogy makes up 9% of all defects, and occurs in about 2 out of every 10,000 births. It is much more common with children who have Down syndrome.

We consider ourselves lucky and thankful for this beautiful little boy. The odds have been against him since conception and he has thrived. In addition to family and their immediate support, research into surgeons, and their congratulations, because you know what, having a child is a celebration no matter the challenge God may present to you, our friends were amazing. Alex's office sent us a beautiful bouquet and teddy bear, we have friends who we called and let us cry to and talked us through those first few days of the unknown. Thank you- you know who you are. We love you all.

Long night ahead.

2009-12-02T21:44:00.000-05:00

Growing up, I was never a fan of roller coasters or the unknown. Immediately after the birth of little man, we got on one of the craziest emotional roller coasters I couldn't have imagined or wished on our worst enemy. After I was done being sewn up, I was taken to a recovery area and was surprised to find myself...alone. Alex and Liam both weren't in the room and I was told that's where they would be. My nurse put some hot air blanket on me because my temperature had dropped too low and went off to look for them. It was about 1am. At 1:30 am, she came back and I was in a panic. She said Alex was with Liam over in NICU. Alex walked in shortly after and reassured me all was ok, they just needed to get his oxygen levels up. They were thought to be low because of the c-section.

We waited. And waited. Finally at 3am, after being talked to by the nurse and one of the surgeons about senseless stuff for over 30 minutes, I threw a mini fit and said take me to him. So 3 hours and 10 minutes after he was born, I was rolled in the bed over to NICU. He was hooked up to a number of monitors and had oxygen. It was both scary but exciting to see him finally. The NICU staff told us he was doing well and should be in my recovery room that morning. They placed him in my arms and I finally noticed how tiny he was. I wasn't sure how to hold him and that scared me.

We rolled away shortly after this and about 5 feet from his room, I got sick- I mean green bile and what seemed like buckets of it everywhere. I don't know if it was my nerves but I felt such relief knowing he was okay, I guess I lost it. We finally were admitted to our room and went to bed about 4am. I was wide awake again at 6am and called the NICU. I was told we had to wait until after the shift change at 7:30am to come back. At this point, I was beyond anxious so I called my Mommy. Alex had called everyone the night before but we didn't get to our room til dawn so this was the first chance I had to check in. It was great just talking about the delivery and my son, using the word son. It calmed me down a ton.

Finally, the nurse came to take us to NICU and she had me walk to the wheelchair. I felt okay and only had a little pain. When we got to his room, the oxygen was off which I took for a good sign and was hoping I could just take him with me. One of the nurses gave him to me to hold and said the doctor would be in shortly. This is where that aforementioned roller coaster ride would really begin to spin out of control, 8 hours after he was born.

With 10 minutes to spare.

2009-12-02T16:25:00.000-05:00

William Michael Kuhns joined this world at 11:50 p.m. on 11/11/2009. And its a good thing too because those born on 11/12 just paled in comparison to Veterans Day, Gen Patton, etc. (Tonya Harding and Jeffrey Dahmer, keep your birthday).

I was admitted to the hospital on 11/1o after a high blood pressure reading at my 37 week appointment. My reaction was it should be high after being made over 2 hours to wait for the doctor to see me. Oh well, apparently no one else believed that I was just annoyed. I was given some medicine and told I would be staying overnight. Alex came after work and snuck me a piece of carrot cake from the cafeteria since I couldn't get anyone to feed me and it had been 12 hours. We watched tv, talked and said good night. He went home to let the dogs out and get a good nights sleep. Good thing..

The next day, I was still being monitored and after a bite to eat at 2pm, was told to only drink water. At 6pm, as Alex and I sat there probably on Facebook a nurse came in and confiscated my water. She said we were going to be delivering that night at 9:30. We called our families and then went into panic. Alex rushed home to get a few things- I wanted qtips, 3, specifically so I could shower and clean my ears. My love of my life came home with the package from the wholesale club. 800. They really weren't that dirty :o)

The dogs were kenneled, bags were packed and camera was charged by 8:30pm. We were wearing our scrubs and taking stupid pictures of ourselves. 9pm came and went. 9:30pm came and went. Finally at 10pm, my favorite nurse Sandi came and told us they were running a little behind. We were brought down about 10:30pm and I walked into the surgery room. I was doing fine until they had to put a new IV in me because my other one was inserted incorrectly. Note to Mom, see I told you it really hurt!

The spinal tap was actually easy but by the time I got it, I was freezing and had the shakes. The doctor said this is just how some people react to the anesthesia and I felt like I was having seizures the entire time. This was the most unpleasant part of the surgery. The doctor began to narrate how they were slicing me open and I told them to stop immediately. Alex was brought in at some point and he held my hand. He remembered my one request and began talking to me so I couldn't hear the surgery. Alex recounted all of our funny and greatest dates, wedding, honeymoon and was amazing. And then I remember someone asking Alex if he wanted to watch, he said hell yes or something to that effect and jumped up. And then the elephant sat on me. It literally felt like I was being suffocated to death and they warned me it would. Alex watched our son being delivered and hearing his amazement gave my hope it was almost over.

William Michael came into this world screaming and squealing, something that surprised us both and made me cry immediately. They told us he probably wouldn't because c-section kids don't exercise their lungs like natural births. He was brought to the bassinet which was over my left shoulder and I was watching Alex as he saw him for the first time. I heard little bits of the conversation. One nurse said red hair and I laughed. Alex took some pictures and came over to me to show them. They weighed him and he came in well under the 7lb baby we expected- just 5 lbs, 6 oz. He was 19 inches and 3/8s long, much longer than anticipated as well. After Liam was wrapped, they brought him over to me and I kissed him, told him I loved him and I would see him soon. Alex went with Liam and the pediatrician for all the official stuff as I was sewed up. I don't remember much other than one nurse holding my shoulders because I was shaking. I was offered some other drug to take the edge off but declined- I just wanted to go see my baby and remember every detail.