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.
Monday, February 28, 2011
Sunday, February 20, 2011
We've Moved!
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!
Friday, February 11, 2011
CHD Awareness Week
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?"
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?"
Wednesday, February 2, 2011
Mom's Health Update
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!
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!
Monday, January 31, 2011
Let it snow...
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.
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.
Thursday, January 20, 2011
One Year Annivesary
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.
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.
Friday, December 31, 2010
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)
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)
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