Shove Off 2010

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,

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

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

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

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

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

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

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!

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

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

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

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

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!

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.

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!

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!!

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

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

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

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!

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

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!

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

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

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

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

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"

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!

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!

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..

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

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

long day

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.