Friday and Life is Good

I met with the attending yesterday and she said pulmonology is happy with her getting a trach at her current settings (pressure 22 over 6, rate of 40). She did not think she would try to lower the rate any more than 35 for the time being. The attending wants to hold off a week or two on the trach so she can take advantage of the cuffed ET tube and practice feeding into her stomach. Yikes. No one but the doctors thinks feeding into her stomach is a good idea, but there you go. The loose plan is to see how feedings go and then talk over options with the surgeon. She will be having surgery in 2-3 weeks, whether it is the trach or some kind of GI procedure.

Yesterday they went down on the nitric to 13 and put off lowering her rate until evening. Late last night she was up in her Os so they put it off further. I made Steve make the morning call today because I was too nervous. He's on a streak of good morning updates so I hoped his luck would continue.

They lowered her rate to 35 and she had such a great blood gas that they lowered her AGAIN overnight to 30. That is exactly half of what it was last week. Her O2 is in the high 40's, so no major change there.

She has been fairly comfortable and resting a great deal. One of her primary nurses insists that it is "sleep and breast milk" behind her recent improvements. It has been a remarkable week of watching her have visible improvements. Her doctor warned me that the improvements will slow down soon and from there on it will be a slow process but for now we enjoy watching Natters kick butt.

Speaking of butts, she has tolerated returning to feeds very nicely. She overheard them discussing giving her a suppository and responded by filling 4 diapers in one day. Go Natters!

She did develop a little rash on her neck and that needs to be completely cleared up before the trach as it is right where her trach ties will go. It was very funny watching the NICU respond to a simple rash. The nurse went to discuss it with the team and soon there was a 2nd year resident, a 1st year resident and a medical student standing over Natalie with the bright lights on. There was a lot of conversation and they settled on applying an anti-fungal cream (that the nurse already said she needed). About 15 minutes later the fellow came in and examined her and suggested the same cream.
I have never seen so much fuss over a simple rash. Steve thinks they were all excited because she actually had a problem they knew how to address.

Oh, and she lost a little weight so she is now up to 25 cc an hour. I need to increase my pumping or this little girl is going to surpass me. They have not fortified her feedings since the NEC but according to the last attending she is growing "like gangbusters." I believe that is the technical term. She is nearly 10 lbs. This is amazing for a preemie who is battling such severe lung issues. She is finally on the growth charts (barely, but she's there).

Well, this update was a little longer than I thought but I was so excited about her rate change I wanted to share. They may keep her at this rate for awhile so she does not have to work too hard.

I am working on my patience and accepting going forward without a plan. Much of this journey has been responding to crisis so being in a position to take our time with decisions feels strange. There is too much room to mull things over and anticipate. In the meantime, Natalie continues to be remarkable and absolutely adorable. I need to concentrate on that and focus on the present.