Sunday, October 27, 2013

A Quick Update on Hazel Grace

Sweet baby Hazel Grace is doing quite well.  She is still on the jet ventilator, but after fighting with the doctors a bit, I have been able to hold her almost every day for a week now and her pressures have gone down 3 points to 21.  Yay!

She weighs 5 pounds, 9 ounces, and she is 27 weeks gestation, so she is now eligible to be moved to Children's Hospital in DC.  The only problem is that she can't be moved while on a jet ventilator because there is not a transport system that will support a jet.  I am hoping and praying that as she continues to grow this week and I continue to juggle my crazy schedule so that I can get in to hold her every day, her pressures will go down low enough that she can be put on a conventional ventilator and be transported so that she can begin to get the support and care that she needs to either make the transition off the ventilator completely or to get a trach and have a lot more freedom of movement.

She is being seen by a physical therapist as well as an occupational therapist a few times a week, and it is becoming more and more apparent that she is one strong little girl!  She is still 3 weeks away from being a term baby, and she can already lift her head while on her tummy and she tries to turn it, tubes and all!  The PT and OT say that her high muscle tone is due to her constantly fighting the equipment that she has been hooked up to since weight lifting, in a way.  But this makes it all the more clear that she really needs to get those tubes out of her mouth one way or another!

So, for that reason, we are excited about her upcoming move to Children's, but the increased travel time and paying for parking has me a little worried.  The logistics of everything is already so difficult, I am not looking forward to having to work out a new system and trying to find a new balance for everything that is already so precarious.

The kids are all hanging in there.  Gabriel is still having the worst time of it.  He still loves to go in to see baby Hazel, and the last time he went in to see her, she was crying and he was so upset because he just knew that she was crying because of the tape that is on her face holding the tubes in.  He's probably at least partly right, but unfortunately, there's just nothing we can do about that right now.  Hang in there just a bit longer, big brother Gabriel!  I'm sure that Hazel Grace is just as anxious to get out and play with you as you are with her!  Too bad Gabriel can't hold her yet.  I am sure they would both love it!  Hopefully soon, though!

So please continue to keep us in your prayers.  Specifically, we are praying that Hazel Grace can be moved to a conventional ventilator this week so that she can be transported with less risk and trauma (to both her and me!).

I'll keep you posted!

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