Thursday, February 5, 2015

Day 5 - Lizzie

Our journey as heart parents began because all we wanted was a healthy baby….

Since I was a teenager I believed I would have a daughter from China. I’m really not sure why, but I just really thought I would. We figured we would have a child or two through birth and then adopt. But then we had two infant nieces die of an undiagnosable as of this time genetic disorder and since all we wanted was a healthy baby, we realized she would come first!

And she did! In 2005,after our paperwork had been in China for only 9 months, we traveled and adopted our fabulous Emily. She was 8 months old,smallish, but healthy as could be. Ask any of the other 17 families who traveled with us who had the loudest set of lungs!

We came home, settled in to a happy life with a baby who was just a joy and a gift from God and put off thinking about how we would keep growing our family. We weren't ready for two and things had gone very quickly the last time. We had plenty of time to decide how Emily’s sibling would arrive.

Things began to slow down in the later parts of 2005 and slow even more in the next few years. We decided to go ahead and get our paperwork ready for our next child so that we wouldn't be waiting forever for our Elizabeth. In July 2007 we sent our second dossier to China. And we waited. And we were logged in,translated, reviewed, and we waited and waited and waited. And while we waited we watched Emily growing and kept thinking how far apart our girls would be in age! And how maybe we should think about a Waiting Child. Preferably one with an extra pinky already removed, or a slight club foot,or the inconveniently placed birth mark that we heard sometimes put children on the WC list. We even told a friend who is an orthopedist we weren't going to do anything hard….like hearts.

Then a friend of mine whose husband is a physician adopted a little boy with a Ventricular Septal Defect and I thought, “WOW. But, we can’t do that….neither of us is anything medical!” but she told me that his VSD was closing on its own and he would likely never need surgery. Well,I thought, maybe we could do THAT! So, we began to look at heart children. Now,she had assured me that when we found our child, we would BOTH be comfortable with the decision. For us, that was very true. One day, I handed my husband the laptop and said “There are three kids on this list who I think could potentially be a match for us. Take a look.” He read the summaries and looked at the pictures and emphatically chose Lizzie’s file to ask our agency to share with us. At 17 months, she was a little older than I had thought she would be but I agreed. We waited as hopefully as parents probably do who are waiting to see how many lines appear on a stick. Was this her? We researched her condition,Tetrology of Fallot, and learned that it is not an uncommon type of Congenital Heart Disease and that it was indeed reparable. We also knew that she would require some facial surgery due to a cleft at her lip. We had a local pediatric cardiologist confirm that ToF is reparable (although he warned us there was not a lot of information in the medical report) and were happy! He told us that she should be fine on the flight home and not to bring a pulse oxometer to check her oxygen saturation levels because it was likely that it would scare us.

4 years and 364 days after we first held our Emily we held our Lizzie. Although she was a full year older at 21 months than her sister had been at adoption, she wore the same size clothes I had brought for Em. She was tiny. Her little arms and legs looked stick like. We soon learned she loved to eat all sorts of food,preferred her milk in a cup, and just couldn’t seem to eat enough to get big. She preferred to be held by me rather than walk most of the time,but she still huffed and puffed,turned blue and couldn’t catch her breath at times. The day we needed to complete her adoption paperwork I couldn’t wake her up. Since it was our first morning together I honestly didn’t know if she was unconscious or incredibly tired from the day before. Her hands,feet and lips were blue. I stood in the lobby of our hotel with tears streaming silently downy face. Our wonderful guide very gently asked if we wanted more time to decide. But we already had decided. We knew she was our baby before we left for China. We knew that God had given us this baby and we knew we were supposed to bring her home. We knew that her CHD required surgery and that if she didn’t get it she would have an early death. Luckily, I didn’t know that a baby in the U.S. gets repaired before 6 months of age. Luckily, while I was at times petrified about her color and irregular breathing, I also had no idea how serious her case was at the time.

So,we went to sign the paperwork and her nanny and the assistant director of her SWI watched the two of us like hawks. Periodically they would ask me to lay her down on her back to help her catch her breath (pulling her knees to her chest is also helpful; it forces some of the blood in her heart back in the correct direction. We found this out when we got home). She saw that they were ok with us taking care of her,and they saw how devoted we already were to the girl they loved so much. I became Lizzie’s mama in those blue moments. She gave me the gift of love and trust almost at once. I’m so grateful for the women who loved her first and were able to teach her to love and trust.

We came home late on a Thursday and had an appointment at the pediatrician at noon and cardiology at 2:30 the next day. She had “Tet spells” in the car on the way there and I had to grab her out of her carseat and lay her down flat so she could breathe. I began to feel panic. I took a baby I couldn’t wake up to her first appointment. Her pediatrician recently laughed with me about how cool and collected I was. It was jet lag. I didn't have enough energy to appear upset. At 2:30, my now awake blue baby screamed bloody murder at the oxygen monitor,the ECHO she got, the blood pressure cuffs (neonatal size for the tiny legs she had) and snuggled up to me while covering herself completely in a blanket so her cardiologist couldn't see her at all. Every once in a while, she would lower the blanket,turn her head and shoot him a very nasty look. He rocked our world when he said “Well, she has a serious heart condition.” Excuse me??

Turns out, Tetrology of Fallot is actually 4 defects in the heart. The hole in the wall between the ventricle that allows the oxygenated and the unoxgenated blood to mix (which is why she turned blue),the too small pulmonary valve and artery and the overriding aorta. Oh. Well. Glad we didn't know that before-it would have overwhelmed us. We might have missed out on this incredible child because we might have been too frightened.

Eleven days after we got home she had her first (and what we had hoped to be her last) open heart surgery. She was in the hospital for a week. Her pulmonary valve and artery couldn't be stretched enough though and so when she was almost five she had her second. Her pulmonary valve and artery were replaced with an adult donor valve and artery. Her right ventricle which had become enlarged from extra pumping was reduced surgically. Unfortunately, six months after surgery the same patient,kind cardiologist who first saw us told us the valve had failed. But you can’t stop our girl. We call her The Ninja because she is so incredibly tough. She came home from her second surgery after three days instead of a week.

He says that eventually she will begin to be more tired and then we will know thanks to her fatigue and an ECHO that it is time to replace her valve. If she can gain about 10 more pounds in the mean time, thanks to the generosity of the family of her human donor it can be replaced in the cath lab and she can come home the next day. If she needs it sooner, it will have to be another open heart surgery.

So,there we are! Most days we never think about her heart. It is no longer denial, it is just a fact of life. If you saw her running, riding a two wheeler, playing and talking you would never believe me that she had ever been so sick. She is incredibly healthy and well. She ran more laps at a fundraiser than many of her kindergarten peers. And she’s funny,smart,kind,and fierce.

It is no wonder that her heart was broken. How could a tiny heart hold that much love inside? If I could go back in time, would I do it all over again? Yes. I would never wish for her to have CHD but yes, I would do it all over again a million times without any hesitation. If you are thinking about considering a child who has CHD don’t be afraid, but be educated. Learn all you can about the different defects and what you might be able to handle. We premeditate before dental visits and she may be on aspirin for life after her next valve but those are the only ways her CHD affects our daily life. CHD is scary. But your child? Your child is amazing! Just like any others you may already have…..


Andrea O. said...

I enjoyed reading about your journey to your daughter. Thanks for sharing!

LisaE. said...

Very sweet. So happy to hear how well she is doing.

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