Friday we had a bit of a rough day. Natalie had some bilious secretions come out of her stomach. It is so hard to know when something is a minor blip or the start of something significant. In addition to that the plastic surgery team had to be consulted for Natalie's pressure sore and the whole situation broke my heart. Friday was just one of those days when I could not hold up any longer and had to break down. There was a great deal of crying and exhaustion. The acting attending was very kind and sat with me for a long time, even risking me getting tears and whatnot on her blouse. I think that kind of compassion is the mark of a great physician and I am so grateful that Natalie was able to be a part of Dr. Riccio's training.
Since then things have picked up a bit. We have had several days of small bumps (such as her erratic CO2 levels) but many improvements that override the negative.
As for her tummy, all her drainage tubes are now out and the openings are healing nicely. When we arrived Sunday she was fast asleep on her stomach. This is her favorite position and she hasn't been on her stomach since the NEC was first diagnosed. Her replogle tube (this runs down into her stomach to suction out the contents and air) was turned from suction to gravity. On Monday the replogle was replaced with an NG tube but not much has been coming out. If her abdominal u/s tomorrow looks good she may start feeds again, but it will be a very slow process. It may be weeks before we know if her intestines are truly healthy. Strictures can form over a long period of time and we will not know unless she starts showing symptoms.
The big news on Sunday was that Natalie made two massive poopy diapers. I practically jumped up and down when the nurse told us. I saw the stool and am very glad that she cleared it-I have never seen anything like that come out of a baby and I can not imagine it made her intestines feel so great. The stools still tested positive for blood but it has been in there since the NEC so that is to be expected. She had one more stool today while I was visiting. SO thrilling to see her body doing what it should!!!
The other big news is her MAP (mean airway pressure). So when she had the "really bad day" and was put back on iNO her MAP jumped from 20 to 22. There it sat for the longest time. It is now an incredible 16!!!!!! Just from yesterday it went from 19 to 16. That is craziness. She seems to be tolerating the decreased MAP well. Her O2 requirements are in the 50s, which is not great but it also has not gotten any worse with the vent changes.
The new attending (Dr. Pryhuber, back again after only 3 weeks off) seems determined to get her back on the conventional vent ASAP. That means many things. including being able to hold her again. I can not find words for what it will mean to have her in my arms again. Ahhhhhhhhhhh.........
The great progress has brought great anxiety. Today was her last day of antibiotics for the NEC and I am bracing myself for another infection. It seems I do not know how to cope on good days-I am always waiting for the next hit to strike. At the same time, we are celebrating the lower MAP and the poopy messes all the same.
Anyone interested in passing along the "Are You My Mother?" story is welcome to. Natalie has really been enjoying her books on tape and listens several times a day.
I know there is probably more to report and I have a lot of pictures to post but I am about as tired as I can be. Thank you all for your support and kind words. It is such a boost to our spirits!