I think every parent go in for the routine ultrasound and the biggest news is to find out whether or not it's a boy or a girl they are expecting. We also found out right away that we were having another little boy. Lucas was happy. He wanted a baby brother. My doctor then thought she noticed a cleft. Since she wasn't for sure she referred us to our local hospital for a more in depth ultrasound.
This is when we truly felt the rug get pulled from under our feet. The ultrasound techinician and then the attending doctor kept looking at our little boy's heart. Finally the doctor sat down and told us the shocking news. Our little boy's heart wasn't normal. Our heart and dreams were that instant shattered. I remember Dwayne saying very softly, while he was sobbing, that this is very bad.
The following day we came back to meet with a children's cardiologist, so he could take a look at the heart, and what we were dealing with. We also opted to have an amniocentosis. Since our little boy also had a cleft lip and palate there was a concern that there was more medical issues that couldn't be detected by an ultrasound.
The cardiologist was very optimistic. He told us that our baby had tetralogy of fallot with pulmonary atresia. He explained that our baby would need surgery a few days after birth and then another surgery around six months - one year of age. The second surgery would be to do the final repair of his heart. We left that day with ton of hope and a smile on our face. Yes, our baby would need surgery, but it was fixable.
A few weeks later we got the results from the amniocentosis and our baby had DiGeorge syndrome. This is caused by a partial deletion of chromosome 22. Our genetic counselor sent us a letter (of course after discussing this with us over the phone) exactly what we could expect. When a child has DiGeorge syndrome the chance for them to have a heart defect is very high, especially Tetralogy of Fallot. The chance to have a cleft lip or/and palate is also a very high. We also found out in later ultrasounds that our baby only had one kidney..that's when I almost wanted to tell the doctor to stop finding things wrong!!! Our baby boy could also have a slower learning curve. But he would catch up to his peers as an adult. Lower immune system, lower calcium levels. All that could be medically treated and kept under control.
As my belly grew we got more excited to meet our little man, but I was also nervous. I'm not gonna lie. I was nervous about how he would look. Would I love him the same knowing he had a cleft? And to be honest I was more nervous about that than his heart. Stupid, I know. So most of my research was related to his cleft. Learning how we had to feed him, and it crushed me that I probably couldn't breastfeed him. What kind of surgeries he would need.
Me and the little active boy of mine were monitored very closely the rest of the pregnancy. We had several appointments with the cardiologist and he was very optimistic that our boy would get his first surgery and be home within a week or so after being born. We were estatic to hear this news every time.
Fast forward to April 24th 2011. We went to bed and as I layed down I felt a trickle of water. For those of you who don't know, that's exactly how my labor began with Lucas. Same time of day too. How crazy is that? Especially since I've heard that no labor is the same. Well, mine started out the exact same way, but the outcome was VERY different.
We headed to the hospital, and as we were walking into the hospital I felt the gush of water, which I had been waiting for, since I had experienced it before, so luckily I was prepared :-)
The labor and delivery was, just like with Lucas, an enjoyable moment. But just with a few more tears. I was so scared for my baby. I knew he was ok in my belly. I was taken care of him and providing him with what he needed. But I had no clue how he would handle being on the outside of me.
Noah Alexander entered the world with a very soft cry on April 25th 2011 at 2:25pm. Noah was immediately taken over to the baby bed, so the medical team that was present at the birth could check him out and stabilize him. Dwayne of course was right by him and the first words that came out of his mouth was: "he's soo cute!". I cried, so many emotions. So relieved he was here and doing good. After he had been checked out he got wrapped up in a baby blanket, just like all babies do after birth, and he was placed in my arms. One of the best moments in life when you get to hold your baby for the first time. I fell in love even more than I thought was possible the minute I laid my eyes on him. And of course my silly worries of me finding him cute with his cleft was thrown out the window!
Noah did good while at the hospital with me. He had a good color. I remember he was a little more fussy than Lucas was when he was born. When Noah was two days we got to hold him. For Dwayne it was the first time for him. Looking back now we had no clue what a miracle it was that we got to hold him, because as our journey would progress it would be fewer and further in between those snuggles.
After two days in the hospital I was discharged and Noah was transferred to St. Louis Children's hospital. This place would become his home for the remainder of his life. I remember one time when a nurse pulled up his records on the computer in his room, I saw our address listed as his home address, but it never became his home.
Noah was submitted to Children's on April 27th 2011 and the very next day Noah had his first procedure of many. He had to have anesthesia for his trip to the cath lab. I was trying hard to hold my tears back when I spoke to the anesthesiologist. It was just too much, especially for a hormon raging mom who had just given birth, and my tears just couldn't stop. The purpose of the trip to the cath lab was to find out how Noah's blood flow was around his heart and to find out exactly what needed to be done for his first surgery. The trip went good and Noah did excellent. Already a champ.
His surgery was scheduled for April 30th. The day before his surgery there was nothing planned for Noah except wait and that day will always be a day that I will remember the rest of my life. This was a day of love and snuggles. Dwayne and I took turns holding Noah.
Noah had his surgery as scheduled. They put in a central shunt. This would be a temporary solution and the hope was that he would grow bigger and stronger, so he could be ready for his next surgery around the age of one. We did find out that Noah's heart defect was more severe than anticipated and instead of two surgeries it was believed he would need three. He would still need two within his first year of life and then his third when he was seven years old.
We were still hopefull and so positive that he would be home within a week. And Noah should have been, if he followed the standard scenario. But Noah didn't. We found out quickly that Noah didn't move as fast forward as many other heart babies does. The main problem was that Noah couldn't get rid of his breathing tube. ( He was intubated at surgery). The next several weeks there was a lot of ups and downs. The medical team tried everything they could for Noah to get rid of his breathing tube. The first attempt failed. He had to be reintubated just after a few hours. His coloring looked horrible and he just appeared misearable as well. The second attempt I'll never forget.
I was aware that they were planning on extubating him. His Christmas tree, as we called his iv poles, were nearly empty. He had gotten rid of so many medications. I came in the morning to see him before extubation, but when I walked into his room his breathing tube was gone! And he looked beautiful. His skin color was amazing. Both Dwayne and I were estatic. I left that day on cloud nine. I was so giddy. That evening at dinner we were talking about that we really needed to get the house ready for Noah. We had been unsuccessfull in finding the mattress for the bassinet, so we knew we had to go back up in the attack and dig around again. We were so full of hope and the thought of Noah being home in a matter of days couldn't have made us more happier than we were.
But when I came back to the hospital the next day and layed my eyes on him, I just knew. The roller coaster went down hill and my hopes were crushed again. From looking at his color I knew he had to be intubated. And my mommy instincts weren't wrong. Later that day we had to have the breathing tube put back in. Such a kick to the gut since he had been doing so well.
After the second failed attempt the doctors wanted Noah to go back to the cath lab and check out his blood flow again. And they discovered that he had way too much blood flow going to his lungs and not the rest of his body. They had a feeling about this, but they told us it was much worse than anticipated. Noah would need surgery again, and he was only a month old.
We did a lot of waiting for the OR to become available. Noah wasn't criticial, so there was more urgent cases before him, and we had to wait for an opening. At that moment it was frustrating. I always hated the waiting game. I had come to terms with that he needed another surgery. But looking back now I'm glad we were waiting, because I gave us more quality time with Noah and as a family of four.
Noah's surgeon decided that Noah needed, as Dwayne always said, the big surgery. This was the surgery Noah was first supposed to get when he was one year old. But instead they were gonna try to do it when he was only seven weeks old. This was HUGE. Very risky because his arteries were so tiny. But we had to try. Noah needed to get better.
On June 14th 2011 Noah went in for his second open heart surgery. This time they would stop Noah's heart and he would be placed on a heart/lung bypass machine. I'll never forget what the anesthesiologist told us the morning of his surgery. "This is as big as they come". It just crushed me, I felt my legs give out on me and I just needed to sit down. It was so hard to follow him down to the OR. We had no clue whether or not he would make it through surgery.
But Noah made it through surgery. A surgery that lasted ten long hours. In my mind if Noah made it through surgery he would be ok. We knew the first 24 hours after surgery would be critical. And as we walked up to his room to see him again after he had settled in to his room, I didn't know what to expect or how he would look. When I walked through those doors to his room I almost wanted to turn around and walk out again. My baby, my sweet baby, was laying on his bed with his chest still open. I could see his little heart working hard. No one should see their baby with their chest open. We have pictures of him like that, but we have never shared them. And I don't think I can. It's awful what conginetal heart defect can do to a baby or child.
Noah fought that night. He fought for his life. His oxygen saturation kept dropping. For a normal human being it should be 100%, but in Noah's case they kept dropping. Dwayne said he saw it dropping into the thirties. And that is dangerous. That can cause some serious damage to the body.
The following morning we had no other choice but to place him on ECMO. This works just as the heart/lung bypass machine. ECMO would do majority of the work for Noah, but the hopes were that he would get a much needed break and rest and hopefully that he could gain the strenght that he needed.
We had one BIG problem though. Noah's left lung collapsed during surgery. The surgeon had to push hard on his lungs to reach the tiny arteries behind his heart. It was a race between Noah's left lung and the ECMO machine. It's very risky to be placed on ECMO. Noah had to be on a blood thinner which increases the chances of blood clots in the lines. They would check for blood clots every hour with a little flash light. And there's the risk of bleeding. Normally a child can be on ECMO for maybe 5-10 days.
While Noah was on ECMO the doctors tried several things to get him better. They sent him to the cath lab to balloon up his arteries. They couldn't be as aggressive as they wanted to be because there was an increased risk of bleeding due to Noah's fresh surtures. And if they would get damaged it would be fatal. They also tried different things with different breathing machines to open up his lung. All of this helped a little bit. They had tried several trials of clamping of the ECMO circuit to see how he would do. During those trials our eyes were glued to the monitor and how those numbers looked. To us they looked pretty good.
Finally after 23 days on ECMO, which is a MIRACLE in itself we had, what we believed, the window of opportunity. Noah got taken off of ECMO. We were told that once he was off he couldn't be put back on. So this was huge. Either he would make it or he wouldn't.
That morning they had done another trial run and the doctor came in and told us that the numbers didn't look good so the chances of him pulling through was not looking good.
And he was right. Noah was taken off of ECMO, and he did the work himself for a couple of hours. When it was apparent that Noah wouldn't make and he was in fact dying, we choose to turn everything off. First thing that was turned off was his medications. He got a four times as much morphine as normal, so he wouldn't feel any pain. They unhooked all the lines from him, and they placed him in my arms. We hadn't held him since the day before his first surgery. Nine weeks without holding him. I held him and Dwayne kneeled down in front of me and he put his arms under him as well, so we both held him together when he took his final breath.
Noah lived a short life, but he served his purpose here. He taught us so much. We'll miss him for the rest of our lives. Our family will never be complete.
Noah passed away on July 7th 2011 at 6:21pm. He was ten weeks and three days old.
This is such a short write up of his life. And it's such a short write up of his medical journey. There was so much more to him. We enjoyed every single day with him that we got to look into his eyes, sing to him, read to him. I'm sure he loved the days when his big brother would come and visit him. Lucas sure brought life to the room. Those two boys have watched a lot of cartoons together, which fills my heart with joy.
