I know it has been a long time since I have posted. I keep waiting to feel like we are on some sort of solid ground so I know what update to write. As that point seems a ways off I will just let you know where we are now.
At the care team meeting her doctors agreed to another trial of nitric oxide despite her not having a current diagnosis of pulmonary hypertension. I have spent the past month or so approaching every new attending with the research I found on using nitric to treat BPD. When the new attending came on last weekend it was only hours before I asked to sit down with him. He smiled because he already knew what was coming. Well, finally there was agreement and a plan was set for the upcoming week when she was further along in her antibiotic course.
That was last Wednesday. Thursday I arrived at the hospital and Natalie was not doing well. There was the normal work-up of a chest X-ray and blood gases. Her high CO2 was easily remedied with an ET change. In under a week she had managed to block another tube with secretions. Her oxygenation however was not improving. For the first time since being put on the oscillator her MAP (mean airway pressure) had to be increased. I can not tell you how awful that felt. Her lungs requiring more pressure to open means they have become more fibrous and less compliant. The higher MAP also works against her lungs forming healthy tissue.
Steve joined me at the hospital and we spent a long afternoon discussing what this progression of her lung disease meant. I know we are not the only parents to face difficult medical decisions for children but it is a very small consolation.
We were determined to give the nitric a chance and resolved to ask the doctors to move ahead with administering it now rather than waiting a week. We were actually on the same page with the doctors. When we returned from our walk the acting attending was there to say that she felt they had done all the usual things to improve her oxygenation and everything failed. It was time to give the iNO a chance.
My sweet niece was with us last week to help with Annie (thank you again Kate!). We went home to have dinner with her and Anneliese. It is funny how on the inside my heart can be absolutely wrenched but on the outside I still need to perform normal functions. I still marvel whenever I manage a normal conversation or do something ordinary like grocery shopping. My mind is in this constant crisis mode but you can not present yourself that way to the world. People would stop coming near you.
Waiting to see if she would respond to the iNO were some of the longest hours of my life. If it did not work we were reaching the end of the treatment options. In fact most hospitals would not have even allowed the trial of iNO and would have said we were already at the end.
Steve stayed home with Annie and Kate so I made the return trip to the hospital alone. I decided against calling because I did not want to hear over the phone. I gathered up my courage, walked into her room and saw her O2 requirement was 48% and her saturation was 93%. For the past 24 hours she had been struggling to saturate in the 80's at 90-100% O2. I looked at the number, pointed and looked at the nurse. She nodded and smiled. The iNO was started at 5:30PM and her O2 settings went down about 20% an hour until reaching the mid 40's.
I called Steve, told him the news then went to stand by my baby girl. She held my finger and I alternated between staring at her O2 monitor on my left, her perfect face and then her pulse ox display. What an amazing feeling. I never wanted to leave. It seemed if I stayed right there things would remain this good and only get better.
With great progress comes great anxiety. We felt as celebratory as we did nauseated and could barely sleep. Her O2 requirement actually made its way all the way down to 40% in the morning. sigh.
Now if this were a movie it would be clear sailing from this point on. I wish I could say that is the case.
The iNO has made a significant difference in her oxygenation, but it is not the magic bullet we were hoping for. She did not last long in the 40's and her new baseline seems to be in the 50-60's range. She still has times at higher requirements and they have not yet been able to lower her MAP. This is crucial for her recovery-we need to find a balance of lower pressures and lower O2 exposure for her lungs to develop healthy tissue.
This has been a particularly difficult time for us as we have had to confront the reality of Natalie's lung disease. As a mother this week has felt like being continually kicked in the chest. I want very much to just hold my sweet baby and comfort her. Instead we continue our patient vigil next to her bed hoping that somehow things will turn around and her lungs will make progress in the right direction.
Last night we had a quick visit and Natalie was wide awake looking around. We talked, changed her diaper, took her temp and enjoyed seeing her bright eyes. Before we left I ready her Everywhere Babies ( a personal favorite) and Goodnight Moon. She relaxed and fell asleep. A normal bed time were it not for the oscillating vent, the tanks of iNO, the nurse checking vital signs and our inability to hold her for even a moment. This is not how I planned to mother her, it is not how I want to mother her, but we will enjoy every bit that we can amidst the constant fear and medical atmosphere of the NICU. Natalie is our treasure and we are so lucky she is ours.