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| Olivia |
We were also told that due to Olivia’s CHD diagnosis that genetic testing should be done to determine if Olivia also had DiGeorge Syndrome/VCFS/22q Deletion Syndrome (the syndrome has many names, all meaning the same thing). Simply put DiGeorge Syndrome is when one is missing a piece of the 22 chromosome. The blood work was done and a week later we were told that Olivia did in fact have DiGeorge as well.
Because of Olivia’s lack of size, the doctors and surgeons decided to give her an opportunity to gain as much weight as possible to increase her chances of a successful surgery. This was also possible because she was not showing serious signs of distress.
On March 7th, our new little family took the longest and shortest walk in our lives. We were led from the NICU to the operating room holding area and into an operating holding room, where we met with the anesthesiologist and an operating room nurse, from whom we would get the periodic updates during surgery. After a few minutes, we both had to walk out of the room and leave Olivia so they could prep her for open heart surgery. This has to be the hardest thing that either one of us have had to do. To leave your six week old lying on a bed looking up at you like she just wants to be held, having no idea what is about to happen is something that no parent should have to go through. Along with many family members, we waited in the waiting room for each update. We received word that everything was going fine and on schedule with no surprises. Roughly six hours after we left Olivia in that room, we received the update that the surgeon was done and we would be able to see her in a couple of hours in the cardiovascular ICU. We saw Olivia in CVICU as soon as they would let us and honestly, she looked wonderful. I am not sure if that is because we expected the worse, or what, but we both thought that Olivia looked awesome. The next day, the breathing tube was removed and slowly, day by day, one at a time, each tube, wire and IV was removed. She had done remarkably well during her recovery and was getting stronger every day.
On March 30th, 64 days after being admitted, we headed home with Olivia for the first time. She weighed just under 6lbs and was getting bigger by the minute. A few days previous, she was given a feeding tube to assist in making sure she is getting enough nutrients so she can continue to gain weight.
A week after her heart diagnosis, we were told about a support group called Mended Little Hearts. We were not sure if we were ready to “go public” with our new found way of life. We really didn’t know what our own emotions were, so how were we going to talk to strangers about it. We finally decided that we would attend the meeting. We are extremely glad that we did. It was the perfect thing at the perfect time. We saw other ‘heart’ kids running around being kids, we talked to other heart parents that had been exactly where we were and we were able to ask questions about what was in front of us. Everyone in the group provided us support and for that we will forever be grateful. Without the Mended Little Hearts support group, I am not sure where we would have ended up.
Olivia is now a happy “healthy” 4 year. Olivia’s prognosis is good. She will need additional heart surgeries in the future, we just do not know when. Olivia was able to have her feeding tube removed in June of 2009. We are very proud of her!
We live life one day at a time and cherish each and every moment that we are afforded. We know that we have a very special little girl.
Hearts Hugs!
