Tuesday, August 14, 2012

We're Live!

First of all, I'm so happy that this website is officially "launched".  It's far from ready and any suggestions are welcome.  Thank you for all of your support and for reading and sharing Neely's story.  Speaking of which, it occurs to me that we need a shorter version.  I'll let my brother try to figure out where it should go on the site, but here it is:

Neely Lucquete was born on June 14, 2012 and was diagnosed with a rare form of Hirschsprung's Disease. This disease usually only involves part of the large intestine, but in her case it starts all the way up in her small intestine (at the jejunem). She does not have the nerve cells that allow the intestinal tract to push food through. She is unable to drink normal amounts of breastmilk or formula because it would get stuck in her intestinal tract. Her only options are palliative care or intestinal transplant. We have opted for transplant. Until she receives a transplant, she must survive on IV feedings, which will eventually cause her liver to fail. 

She is able to tolerate tiny amounts of breastmilk. Her intestines don't move, but they can still digest. A small portion of her small intestine is connected to a stoma on her tummy, so she can "poop" this digested milk and bile. It is a short distance from her stomach to the stoma, not enough length to absorb the required nutrients, but short enough that the intestine doesn't need to push anything - the poop basically comes out with gravity.  

As stated, Neely needs an intestinal transplant. This procedure has only been done within the last 10 years or so, so it's less established and more risky. Apparently the intestinal tract is a lot more prone to organ rejection. This type of transplant is only done in a handful of places and she must first be accepted as a patient and listed for transplant. We are unsure of how old or how big she needs to be before she is eligible. We've requested that she be seen in Pittsburgh, as their program has been around the longest. Pittsburgh has reviewed her medical records and found her to be an appropriate patient for referral. She must be discharged from the hospital before that process begins, and then it will likely be a few months before the consult because it takes a while to iron things out with insurance. 

Meanwhile, Neely has to get bigger and avoid any infections or further complications. We are hoping to be discharged from the hospital by the end of this week, but will have to learn how to manage all of the gadgets that are keeping her alive. We don't know how much all of this is going to cost, especially long-term. She is covered under 2 insurance plans, but the bills are starting to come in. We plan to continue to work, but ideally one of us would like to stay by her side.

Still a long story, but I hope it answers some questions.  We have so many questions ourselves.

Neely looks great today.  When we came to visit, she was awake and pulling on her ear, which is something her big sister is always doing.

We met with a rep for Neely's G-tube supplies.  The G-tube connects to her stomach from a "button" on her tummy.  The rep was showing us how to work the pump that will (hopefully) feed a constant drip of breast milk directly into her stomach.  She has been on such a small amount, though - 1 cc every hour - that we were surprised the rep was discussing dripping bagfuls of formula.  Doubt that will happen, but it's nice to dream.  If only she could be fed by breast milk alone.

Not much else going on today.  She was unplugged from the IV and was relaxing with her pacifier.  All of the blinds in her room were open - I forget how nice of a room she has.  She's in isolation, which scared me at first, but now I'm glad because it's a huge room with a great view.  No other babies crying around her and we sometimes get away with staying past visiting hours (shhh).  

 ignore the sleeping Papa

you can see the UT stadium!

I swear she smiled at me today, but I wasn't able to get a pic.  I tried to wake up daddy so he could see, but he was a little bit sleepy from having stayed at the hospital late last night and waking up at 3:45AM per usual.  Neely was wearing the cutest little dress and being an angel baby.  I got to hold her against my shoulder and play with her a little before she got hooked back up to her IV.  Her ostomy bag is staying on, her rash looks better, and she is taking her bottle feedings wonderfully!  I hope we're still on track to bring her home this week.  

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