Natalie did very well her first day in the NICU. Every neonatologist we saw was grinning and clearly thrilled with her. She is not the baby they had been warned about for months. Over the course of the day and into the night her vent settings were lowered. When we said goodnight the doctor said he expected her to be off the vent and onto C-PAP (a lower level of breathing assistance) by the next day. At 4 am we received word that she had been taken off the vent and was doing very well. It was an incredible feeling of success.
As we had been warned, the NICU is more of a roller coaster than a straight line of progress. This morning her oxygen levels had to be continually raised and chest X-ray showed that her lungs were hazy and not as inflated as the day before. The doctors decided to try another dose of surfactant so she was intubated again. They left the breathing tube in and put her on the vent to watch her progress. The surfactant helped some, but was not the solution we were looking for.
This afternoon she had an echocardiogram and a large PDA (patent ductus arteriosus)was found. PDA occurs when the connecting blood vessel between the pulmonary artery and the aorta in fetal circulation, called the ductus arteriosus, stays open in a newborn baby. For a preemie this can cause respiratory stress and make distributing oxygen difficult. The cardiologist said her PDA is so large that it is the same diameter as her aorta. It is very likely that this is the source of her respiratory distress. I many ways this is a relief to me as a PDA is a clear cut diagnosis and there are well established treatment plans.
She will receive her first dose of indomethacin tonight in hope of closing the PDA. There are three doses given 12 hours apart in each round. If the first round fails to close it adequately she will receive one more round. If that too fails she will need surgery. The doctor feels one way or another the issue should be resolved by the end of the weekend.
While she is on the indomethacin feeding her is out of the question. She is still receiving her nutrition intravenously through TPN. I am really hoping to have her stabilized soon so she can start getting milk.
The neonatologist explained that she is more complicated to treat and diagnose because to some extent her lungs are still an unknown. She does feel confident, though, that we will primarily be dealing with complications from prematurity and that her lungs are much better than anticipated.
We are amazed by our little girl and falling more and more in love. She is so strong and has endured her medical interventions incredibly well. I am in awe of her. It is such a struggle to be down the hall and away from her. I still find myself rubbing my belly (now more of a defated dough ball) and waiting to feel her kicks.
The reality of having a baby in the NICU is settling in. My overriding emotion is sheer gratitude that she is here and doing so well. Countless times a day I am struck all over again that she is born, she is breathing and she is ours to keep. At the same time, seeing your daughter need this degree of medical assistance is difficult and I long for the day I can actually hold her and care for her on my own. I am eager to finally put aside some of the constant worry that has been with us for months and not have so many medical uncertainties to face everyday. We have already overcome great odds to get this far and I am confident that we will get through this time as well.
I myself am dealing with a new level of fatigue. Coming off from 15 weeks of bed rest, recovering from the C-section and anemia from the abruption and surgery (my uterus would not contract so I had additional blood loss) is taking it's toll on me. I have hopes of focusing on rest, pumping and Natalie for the remainder of my stay. I need to build up some endurance for returning home.
I have so much more to say about our remarkable little girl but I suppose I need to start committing to more rest now. Thank you all for your continued support. Being with Natalie feels like witnessing a miracle and while it is a challenging time these are also euphoric days. I am so happy to share her story with you.