Saturday, July 15, 2006

Mitchel family heart story by heart mom Jen Mitchell.

Noah Atticus Mitchell’s story

Diagnosis: Tricuspid atresia (TA), pulmonary (valve) stenosis (PS), hypoplastic right ventricle (HRV), atrial septal defect (ASD), ventricular septal defect (VSD)

Born: May 2, 2004, 8 lbs., 1 oz via emergency c-section

Surgeries to date: Central shunt & Rashkind procedure (to enlarge ASD), 5/5/04; Glenn, 12/13/04; extra-cardiac Fontan (no fenestration), 6/8/06

At my 20 week ultrasound, the radiology tech told me that she couldn’t see all four chambers of the baby’s heart. She didn’t seem concerned, and she told me that the baby just might be in a weird position; I didn’t really know what to think. I was in disbelief. I got home and called my husband, who at the time was completing a cardiology fellowship at the same hospital where my OB was. He called maternal/fetal medicine (i.e. high risk pregnancy), and we scheduled a Level 2 ultrasound.

At that appointment, the primary diagnosis was tentatively made by the head of maternal/fetal medicine: tricuspid atresia. He didn’t know for sure, though, and actually hinted that maybe I should consider abortion since the diagnosis could potentially be even more severe. (The hospital is Catholic, and doctors are not allowed to suggest abortion as an option.) I couldn’t do it; not because I disagree with it as an option, but because I was already attached. The scariest thing he told me was that there was a pocket of fluid around the baby’s heart–an effusion–and he seemed to think that this meant that the baby was in heart failure. Not knowing much about how CHD babies with tricuspid atresia do in the womb (which is typically quite well), he thought that Noah would die in utero.

Of course, this was all happening within two weeks of Christmas, and doctors were leaving for family trips, so we had to really hunt for a pediatric cardiologist that could do a fetal echo asap. We live in Chicago, and we ended up driving up to Milwaukee to meet with Dr. Michelle Frommet. She confirmed the diagnosis, and actually was very positive about the prognosis; we officially began our journey into the world of CHDs.

A friend of mine managed to find, and I started to educate myself about this “new world” with their website. I read every profile, including every single one in their memorial garden. I bombarded myself with every potential outcome because I think it made me feel more in control.

I was moved into high-risk pregnancy, and they did ultrasounds every two weeks. I also had several non-stress tests. We started to search for a pediatric cardio-thoracic surgeon, and my husband started asking around at work for recommendations. Everyone told us about Dr. Michele Ilbawi at Hope Children’s Hospital in Oak Lawn (south suburb of Chicago). After meeting with other surgeons in the area, we finally met Dr. Ilbawi and I knew that he was the one. He’s got a very calming, positive aura about him; he’s completely humble as well, which I only mention because it seemed to be a rare quality amongst the other surgeons we had met. Unfortunately, Dr. Ilbawi was scheduled to go out of town for a conference the week I was due; I started praying every night that Noah would come early, and I also arranged to be induced a few days before my due date, just in case.

Noah did come early, one week to be exact, but it was not an easy delivery. About four hours into labor, Noah got the umbilical cord wrapped around his neck and leg; every time I had a contraction, his heart rate would severely slow down. (No one realized this was the problem at the time, though, so they assumed the heart issue was related to his CHD.) In no time, they were wheeling me down to the OR to do an emergency c-section. As soon as Noah was born, they whisked him off to the NICU to put him on oxygen, and to eventually administer prostaglandins. These help the PDA to stay open, which usually closes on its own shortly after birth. They did bring him down once for me to see and hold, but then he was back to the NICU for observation.

The morning after he was born, we had to have him transported to the NICU at Hope Children’s to get him ready for his first surgery. (The hospital where I delivered is about 20 miles from Hope.) The hospital chaplain came down to the NICU to baptize Noah before he left. I think this was the saddest moment of my life. The NICU nurses gathered around the crib, and they took a Polaroid of my husband and I holding Noah as the chaplain baptized him. We were all sobbing; we looked terrible! The transport team then took Noah away, and my husband followed them in his car. I was left to recover from my c-section by myself. That was pure agony because instinctively, no matter how terrible I felt, I needed to be with my newborn baby.

The next day, I was released from the hospital, and we went straight to Hope for Noah’s first procedure–the Rashkind, which is done via cath at bedside by the pediatric cardiologist. (All went well.) When we weren’t in the NICU with Noah, I was in the “pumping” room, trying to begin the process of breastfeeding via pump!

On May 5, 2004, Noah had his first surgery–the central shunt. He had one minor complication–one of his lungs filled up with fluid a few days after surgery, so they had to put him in a little oxygen tent, and they did a lot of respiratory therapy on him. Even with this problem, he was home in 7 days. He was followed by the pediatric cardiologist (PC) regularly, but overall, did quite well. I was way more consumed with being a first-time mom to an infant than I was with Noah’s heart defects. Other than not wanting to ever be on his tummy, he was pretty darn normal! The PC would chuckle at every visit because Noah was huge! We fattened him up quite successfully:)

At about four months old, Noah went to daycare at the hospital where my husband works, which did not offer any special care, but at least it was close to a major hospital, and my husband was always within minutes of the daycare. However, it was a normal daycare with super-daycare germs! Noah got croup in November, 2004, and he was hospitalized for four days. As an infant, he just couldn’t cough up the mucous in his upper airways, so we played it safe and kept him in the hospital until he could breathe more easily. After that, the cardiologist decided it was time to do the Glenn since Noah’s oxygen sats were starting to drop. In December, 2004, Noah had his Glenn, and he was out in record time–four days.

After the Glenn, life continued on as usual. Noah crawled a little late–11 months; he also walked a little late, at 17 months. Other than that, he thrived–his language skills are definitely advanced, and he really seemed to enjoy his teacher and his friends at daycare. But, the dreaded Fontan was hanging over our heads. I knew we weren’t done, and I knew through the two support groups of which I am a member, the Fontan seemed to be the surgery where all the complications occurred. I had heard about kids who had died, children who had been in the hospital for weeks and months due to effusions, chylothorax, and infections. I was terrified. My instincts told me Noah would be OK, but I couldn’t get the anxieties out of my head.

On June 8, 2006, Noah had his extra-cardiac Fontan done by the same surgeon as the other two, Dr. Ilbawi. Surgery went very well again, although during recovery, Noah had a lot of chest tube drainage. Noah had his chest tubes in for several days while we all patiently waited for the drainage to slow down. As with the Glenn, Noah was extremely crabby for the first few days, and I am certain he resented my husband and me because he knew we were the ones that put him through the surgery. (The saddest part of the surgery was on Day One, when we yanked Noah out of bed from a deep sleep at 5 a.m. to get him to the hospital. He woke up in the car, extremely happy to see that his grandma had come in all the way from Texas to visit. He had no idea what was in store for him.)

Noah was in the hospital for 10 days; he was in the surgical heart unit for the first 6 days, and then he was moved to the regular peds floor while they tried to get his Coumadin to a therapeutic level. We all had cabin fever toward the end. We know we can’t complain because many kids are in the hospital for much longer periods of time with much more serious complications. That being said, I think that “ICU psychosis” thing, or “hospital-itis” as one nurse called it, really affects everyone. I felt like I was crawling out of my skin; I felt so trapped in that little hospital room on a very small floor with only a small playroom and a wagon for diversions. I know Noah felt the same way. It was horrible to see him so much more aware, scared to death when any medical professional came to even take his temperature. In the hospital this time around, he learned many new words: “No ouchies,” “No ouchies, promise?” and after getting his blood pressure done, he learned to say, “Now, temp?”

On Saturday, June 17, 2006, we came home. It was glorious to be able to sleep in our own beds and to just be around our own “stuff”! Since the surgery, Noah has been back twice for INR checks, and he’s been fine so far. He goes back in two weeks to see his cardiologist.

Now that the Fontan is over, I feel, on one hand, elated–Noah has made it through three heart surgeries, and he’s full of energy that he never had before. He runs through the house, saying, “I’m running fast!” And he is. He walks to the park without getting winded. He’s all over the playground equipment. This surgery has definitely made a difference in his quality of life.

On the other hand, I can’t help but think–what next? When is the other shoe going to drop? It’s like you wait all this time, knowing the next surgery is coming, and now that we’re past the three big ones, it’s hard to let go of that anxiety. I still watch Noah very carefully; I still fear he’ll die early someday due to some kind of random complication related to his heart. I pray every night that he’ll live a long, relatively normal life, and that he’ll have a good quality of life. While I think any new parent checks to see that their child is breathing when they sleep a little later than normal, that idea of Noah dying is always in my head–no matter how healthy he looks and acts, I feel that I’ll always be worried about Noah’s mortality.

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