Monday, December 9, 2013

NICU - Day 131

Sometimes I just can't believe it.

Sometimes, I just can't wrap my mind around it.

Our little miracle, our little sweet baby Hazel Grace.

Today, as I held her and looked down at her little face, her tiny nose with the tubes running through the nostrils and her chubby little cheeks covered with the medical tape to hold those tubes in place, I just looked at her and marveled at how far we've come.

On October 30, when Hazel was moved from Alexandria Hospital to Children's Hospital in DC, the move was made to begin to prepare Hazel Grace for a tracheostomy.

And here we sit, a mere 6 weeks later, and Hazel Grace is bottle feeding and on a nose cannula with only 2 liters of air flowing through it per minute.


Then today, as I held her, and got to do something that I had not thought that I would ever be able to do:

I got to nurse my sweet baby Hazel Grace.

And she did famously!  She latched on right away, once she figured out what was going on, and she sucked well and swallowed quite a bit.  The nurse had told me not to expect much since this was her first time.  She told me that Hazel would only 'test the waters' and not really get to ingest much, but she did and it was amazing!  (Which meant that then the nurse tried to give her the whole 60cc's of milk afterward through her tube, and it over-filled her tummy since she had already gotten quite a bit from me, so she spit it all back up, but at least she's getting the hang of the process!)

We are still a long way from coming, home, and nursing her was not a step that needed to happen for her to come home, but after we realized that she had plateaued and that she was not coming home as soon as we first thought, I figured I'd just as well see what she could do and give her the feel of it before she got too attached to just the bottle.

And Jimmy and I have made a decision:

Hazel Grace must overcome two things before she can come home.  She must be on only .5 liters of O2 at 100% and she must be able to take all of her feedings.

Since she can come home on O2 once she's down to .5 liters, but she can't come home on a NG tube (the feeding tube that goes down her nose), we have decided to focus only on the breathing aspect of her recovery and relax a bit on pushing the oral feeds by entertaining the idea of a G-tube.  This would be a little tube that attaches to a 'button' on her little tummy which allows us to feed her through a tube when she gets home.  She can still eat orally, and we will still work on her getting up to taking all of her feeds orally, of course, but we will not have to worry so much about getting her to take all of her bottle and wearing her out with trying.  It has been that she is unable to take all of her bottle by mouth because she gets tired and it makes her breathe harder and faster, which is prohibiting her from being able to be weaned down from 2 liters on her cannula.  And while the operation is invasive, it is routine and to remove the 'button' when she is done with it is an outpatient procedure, so it is not double surgery.

The idea behind all of this is to get her home as quickly as possible.  She is now 2.5 weeks past her term due date (and 131 days in the NICU!), and after discussing options with her doctor, it seems that her development will be more compromised by a longer stay in the NICU than by getting the G-tube put it.  This is partly because since we have other kids, we just can't be in the NICU for more than a few hours every day, so Hazel just isn't getting the love and attention that she needs (and deserves!  One of the NICU nurses told me that it is the policy in the NICU to not hold the babies very much so that they don't get used to being held and cry for someone to hold them.  That just makes me sad and makes my heart hurt to know that my sweet baby Hazel Grace, since she is not a crier, is just left alone in her crib for hours and hours at a time!).

So, sweet baby, breathe deep and breathe long.  you won't be there forever, and you have a house full of love waiting for you to come home!

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