I have not written about Hazel Grace for a while. It seems that I don't really have time to sit and type on the computer, and when I do have a little time, I find that I can't formulate my thoughts into anything that is coherent or worthy of my Hazel Grace.
But I know that there are many people out there wondering what my sweet baby Hazel Grace is up to, so even though it is after midnight and I just got home from the hospital, I will fill you in.
Because you care
and because I care that you care
and because I firmly believe that Hazel is where she is because of your caring
and your prayers.
Hazel Grace is now on nasal cannula. She is off the vapo-therm, and just has the nubbins in her nose that are connected directly to the air supply coming from the wall of her room. She is on a flow of 2 liters per minute. She started on the vapo-therm at 6 liters/min, and in the last week and a half, she has weaned down to just 2 liters (and off the vapo-therm).
This is incredibly exciting and encouraging to us! This is a HUGE step on her way to getting home!
She also started PO feeding (bottle feeding) on Monday. She started at just one feeding of 50mls of fortified breastmilk by mouth a shift (that would equal once every 12 hours) and all the rest of the feedings by tube but has now graduated to 3 PO feedings a day (one PO feeding to 2 tube feedings). I just gave her a bottle at 9PM, and she took the whole thing famously. She is on a slow flow nipple, and still has some desats (where her oxygen saturation goes down) and brady's (where her heart rate dips) while she's feeding, but she is still considered to be doing really well.
In order to come home, she has to take all of her feedings orally and she has to get completely off the breathing support. If she doesn't do those 2 things, then we have to look at other options, like bringing her home with an oxygen tank and/or bringing her home with a G-tube (a feeding tube that goes directly into her stomach, not through her nose). But most likely, if she does need one or both of those things, they will be only temporarily until she gets a little bigger and has more stamina. She will always have chronic lung disease, but her lungs will grow and will most likely be able to support her with minimal difficulties in the future, and so far it seems that there are no issues with eating other than just having the stamina to feed long enough to take in all the milk before wearing herself out. She doesn't seem to have any oral aversions or oral issues, which is surprising since she was intubated for so long. The only thing that she does have is a deep groove in her palate, but it doesn't seem to be interfering with her eating, and the dentist said that it should resolve on its own or at least not cause any issues down the road.
Speaking of the dentist, Elizabeth got all 4 of her wisdom teeth taken out today! They were all 4 impacted (I thought that meant they were growing in wrong, but what it actually just means is that they are under the gum still, so yes, they were impacted), so it was quite the experience to get them out, but she is recovering well.
And on the school front, I am proud to say that Jo is turning into quite the reader! Some switch flipped and she just realized that it's really cool to be able to read big books, and also that there is a lot of really fun stuff in books and if she can read them on her own, then she can do it whenever she wants to! I had borrowed The Indian in the Cupboard from the library on CD to listen to in the car, and she got really into it. I reminded her that it was also a book in print, so when we went back to the library, she went up to the librarian and asked where she could find it. When they didn't have a copy of it, she came and got the card and put it on hold...all by herself! I was in the kids' room with the babies, and I had just sent her out to choose her books and she came back to tell me that she had gotten the book put on hold for her and would I please pick it up when it comes in. Well, of course I will! Yay for Jo!
And, while I'm listing details, I must say that Jesse's vocabulary is growing by leaps and bounds (so be careful what you say around him!) and also, I think it must have been by mistake, but he ate a piece of an apple! We were at the Farmers' Market and I was handing him bread samples and then I just passed him an apple slice, too, and he ate it! That is HUGE for him. It has been impossible to get him to eat ANYTHING at all for months now. I hope we are turning the page on the food issues with him!
And to not leave him out, Gabriel is hanging in there. He's taking the whole Hazel experience pretty hard and is now having a difficult time separating from Jimmy and me to go to his class at church or basically to do anything, but he's doing ok. Today I was putting together a mobile to take in to Hazel for her crib and he was helping me. 'Is this for Baby Hazel?' he asked. 'Yep' I said. 'Well, when's she coming?' 'She's not, sweetie, I'm taking it to her.' 'I know, Mom, but when's she coming? When is Baby Hazel coming home?'
'I don't know, big guy, I don't know. But I hope it's soon.'
'Yeah, me too. I miss Baby Hazel.'
I know, my love, we all do.