I was getting the kids dressed this morning to bring some more milk to the hospital for Liviana when Dr. Kerr called. He said, "I'm going to try Liviana on room air today and take out her nasal cannula". I said, "oh wow, when were you going to do it"? He said, "I already did, she is doing great". I was so excited! He said yesterday he did not think she needed to be on it anymore so I'm not surprised but it such a huge, exciting step. She is breathing on her own and maintaining her saturations just fine. If she does have any decreases they will likely come when she sleeps, when she breaths shallower but so far, so good. I am Giddy! I dropped her milk off but because the kids were with me I could not go see her (Miles isn't allowed in NICU). I will be up there later this afternoon around 3pm and I can't wait to see her little face free of the cannula. Now, she only has the NG tube for feeds and her monitor probes (heart rate, respiratory rate and oxygen saturations).
Her echo yesterday did show that her pulmonary pressures were back up to 62 from 40. Dr. Kerr is not too worried just yet. He said that some of the other indicators they look at like blood flow between ventricles from left to right looks great, whereas if her pressures were a problem it would be from right to left (I believe that is what he said, my heart functioning and anatomy knowledge is a little weak). He is confident that her pressures will come down on their own as she grows and develops since she is constantly growing new lung vessels and sacs. He was less apt to consider Sildenifil at thsi point because it is not tested in babies and there has been and FDA warning about hearing loss. I hope she improves her pressures on her own and we don't have to consider the medication. Thoughts and prayers are needed.
I brought up the "H" word to Dr. Kerr yesterday....Home. I wanted to know what we needed to accomplish for her to come home. The nasal cannula issue was checked off this morning so feeds is all we have left to do. She is still on 75cc's over 1 hour, every 2 hours right now and they want her to get down to over 1/2 hour before we start actual breastfeeding. She threw up quite a bit yesterday when I was there so they are taking it slowly with her. They have elevated her bed and hope that will help with her reflux (a very common issue with CDH babies). Once she gets down to 1/2 hour feeds we will start feeding with breastfeeding and bottle (when I'm not there). I hope it goes well. Right now she does okay with non-nutritive but I think she is upset about the NON part. She wants milk and she will get a tiny bit and then it stops (I pump before working with her) and she gets mad. It is somewhat cruel to be "nursing" her without the milk and she is not too happy about it. I think once she is getting a real supply she will take much easier to the process. Wish us luck on this issue. It is the only thing standing between us coming home. THey are not focused on the quantity she will be getting, just that she is gaining weight. They will let her demand feed and not put her on a schedule. If she is like Miles and Aria her schedule is going to keep everyone pretty busy with feeding her.
Thank you to everyone who responded with babysitting assistance. I am talking with someone tomorrow about filling in some of our babysitting needs. I am very optimistic that it will work out fine. I don't think we will need her that long since Liviana seems anxious to get home. Brad ended up being able to come home for quite some time yesterday in between appointments since one was cancelled due to weather (thank goodness for that snow yesterday).
I will post pictures of our cannula free girl when I get home tonight. I am SO excited to see her. My last conversation with the nurse was great, she was maintaining her oxygen between 96 and 100.
Check up DAY!
3 weeks ago