I am going to do my best to write this quickly because Robert and I are going to the minor league baseball game tonight with my parents and my niece. Clara had such a wonderful day though, that I needed to share it with all of you faithful followers and pray-ers. Have I mentioned to you lately that your prayers work? Because they do and they are. Daily. We remain so very grateful. Please keep them coming.
Clara is continuing to tolerate her weans very well. Her oxygen is now down to one liter of flow and she has been between 25%-27% for 24 hours now without requiring an increase in FiO2. Remember, room air is 21%, so we are getting very close! She has to be under a liter of flow to be moved to intermediate, so we're getting closer to that milestone too! She has tolerated that wean very well with no increase in respiratory rates or drops in her O2 sats. She is tolerating the wean of morphine well at this new rate (down by 0.1 mg every other day; currently at .67 mg) as well and seems to be doing even better on the ativan than the versed. She's awake and alert more and more now and we are really enjoying her precious smiles, her babbling voice, her tracking eyes and her sweet sweet face. We've also been condensing her tube feeds so she now gets fed for an hour and a half continuously and then has an hour and half with it completely off before the next feed.
Last week Speech Therapy came to work with her and said that while she had some pretty good mouth and tongue reflexes still that she did not do very well with the "paci dips" (that's where they put some milk on a pacifier and have her suck on the paci). So, we thought that we might still be a long way away from successful oral feeds. I've been continuing to offer her the breast, but she had not really shown great signs of progress there, either. Everyone kept saying she was still too weak, too sick, too tired and that she would have an oral aversion from all the time she spent intubated. I just didn't believe it. In my gut all along I've felt like she would be a good feeder which is part of why I think I was so disappointed and discouraged to hear them continue to say that she wasn't going to be able to do this. Yesterday when I offered her the breast she actually latched on and sucked a little bit. Since it was late on a Sunday, nobody else was really around (lactation consultant or doctors or speech therapy) to see it, but I really felt encouraged that she had made some good progress and that feeding would happen sooner than everyone expected. Today I had the lactation consultant (Martha), whom I've really grown to love and appreciate, come and watch when I offered Clara the breast. I was afraid she wouldn't do anything with an audience and that they wouldn't really believe what had happened yesterday. But today she did so much better than yesterday even! She latched on and sucked and swallowed for five to ten minutes! When I pumped afterwards, my guess is that she actually got between 10 and 20 ml of milk! She didn't get totally exhausted, she didn't fuss or cry or try to spit it out. She just did great. I was crying tears of joy; Martha was kissing me and calling out to everyone in the unit, "Come here! Come look at this!" It was so incredible.
Now, all that to say, we will still have a road ahead of us with feeds. Even though she didn't choke or aspirate at all during the feeding, she did throw up a little bit about thirty minutes later, during physical therapy. It's always hard to tell what the trigger might be for her vomits and spit ups, so it may have just been that she got a little extra milk and it was too much food. Or it may have been that she wasn't wild about the position that she was in. She only nursed for a few minutes and she didn't get a whole lot of milk, so we still have work to do and progress to make towards building up where we want her to be. But this is such a great step and it fills me with hope and promise for the future. In many ways, I think I am as excited today as I was on the day of her surgery or when we decannulated or when she was extubated. Regardless of the doctors' predictions about her ability to eat, I just feel so hopeful and optimistic that she will continue to surprise us all and defy our expectations. After all, that's what miracles are all about, right?
I am so excited and happy to say once again, loud and clear, TO GOD BE THE GLORY! It is so empowering and humbling and moving to watch how He is continuing to work in the life of our baby girl and how he is using the prayers of so many people to slowly reveal a miracle in our midst. I just can't say enough: Thanks be to God.
* I do have some sweet photos from the last two days, but I've got a baseball game to catch. If I get home before my last pump for the night, I'll upload them in a separate post.