Wednesday

I can not believe it is Wednesday already.

Monday Natalie had a quiet day but a long evening. When I got there the nurse had managed to get her into her "One Brave Chick" onesie and then wrapped her in her lion blanket as further proof of how tough she is. I wanted to take a picture but was anxious to finally hold her again so decided to take the picture after. Foolish Mommy. She settled right into my arms and her O2 saturation actually improved.. Only 110 minutes later her IV failed to flush and she had to go back to her crib so it could be replaced. Before being moved she managed to cough up a good amount of secretions onto her onesie so I opted to not capture the moment with a picture. I need to remember to never put off a good photo op.

Poor Natters has her mother's veins and what should have been a simple procedure turned into hours of IV attempts. I wanted with all my heart to tell them to leave her alone but she needed it for fluid (because some punk resident chose to increase her feeds at a snail's pace). They did decide to ramp up the volumes faster so by Tuesday morning the IV was no longer necessary.

During a break in the IV attempts I met with one of the pulmonologists. They work with the neonatologists but won't be involved on a daily basis until closer to discharge (a word I hardly let escape my lips). Dr. Voter was asked to evaluate Natalie for a tracheostomy. She felt that, especially considering the recent extubations, now is a great time to think of giving her one. She said that like everything else there is risk and we won't know until we try. Her biggest concern is her ability to ventilate well with it but it is worth taking the chance.

On the upside, Dr. Voter said Natalie is a different baby than the last time she saw her. She is doing much better than anticipated. Coming from a pulmonologist that was music to my ears. Apparently Dr. Voter was working the night Natalie needed her surgery for NEC and she strongly advised them to not do the laparotomy. She remembered that it happened on a Thursday night and when she came in on Monday she was stunned that Natalie was still with us. This has been the theme of my week-everyone wants to recollect her NEC episode and how they thought she would not pull through. At our meeting last week the surgeon kept saying "I did not know if we would get her through the night." Looking back I probably should have been more afraid than I was, but even then I had a feeling she was going to surprise them.

On the downside, Dr. Voter says the future is very hard to predict, especially as they do not have a good sense of why Natalie is as sick as she is. The pulmonology group does not think that the BPD or hypoplastic lungs are enough of an explanation. They have felt for some time that there might be another underlying lung disease but the only way to know for sure is to take a lung biopsy. This was news to me. She does not feel Nat would survive the surgery so it is a pointless idea. At the same time, she feels Natalie is in a place now where she can make improvements and that is hopeful. We discussed all the recent vent weans and she said "Go Natalie!" Natters responded by sleeping soundly and waving her arm. This sweet little baby has no idea just how amazing she is.

Yesterday I met with the GI surgeon, Dr. Lee. He feels that doing the funduplication without knowing for certain that she has reflux is a decision based on fear (which it is) and he feels that there are also enough fears about the surgery itself to warrant holding off. We talked about a G-tube with a catheter that would run to her intestines (as someone mentioned in the comments) but that is a temporary solution. Really we do not know what to do about her feeding. The neonatologist says that while she has a cuffed ET tube the risk of aspirating is low so today they are supposed to start very small feeds into her stomach to see what happens. I can hardly think about it. The whole thing makes me so nervous I wish I could fast forward a few days.

As for the trach, the attending is happy with her pressures on the vent but not the rate. I asked if she needed to be as low as 20bpm but she said she would be happy with 30. Last night she was weaned down to 40 (they go in increments of 5) so really she does not have much further to go. That being said, the doctor feels it will be another 2-3 weeks before she is ready for a trach. That time estimate just about did me in so by the end of the conversation she was predicting 1-2 weeks, I imagine to shut me up. Maybe they want more time with a cuffed tube to practice feeding since once she has the trach her tube will be uncuffed. I don't know. What I do know is I am so past ready for her to have a trach and be comfortable.

Natty's blood gases have been stellar. They have barely budged with all the changes they have made to her settings in the past week. Her oxygen requirements, however, have been creeping up and she is back to the high 50's low 60's. The attending now believes we can get her to a trach without steroids unless her O2 requirements can not be controlled. That is incredibly good fortune. A few short weeks ago everyone thought she would need steroids on top of experimental medications just to get off the oscillator. Here she is working her way to a trach all on her own.

She reached full feeds again yesterday afternoon and finally had a dirty diaper this morning. It is incredible that one self extubation led to her coding and then 4 days without food. Can you tell I am exasperated?

Natters has made incredible progress this week and for that we are thrilled. We hope that with rest and full feeds she can continue to grow and heal just as she has been.

Thank you all for your continued support and kindness. We are so fortunate to be surrounded by such wonderful people!!!!