Surgery Date!

Well, another week, or maybe more, has flown by. We were excited/scared to find out the date for Hailey's open-heart surgery. It will be on December 3rd at Stanford. The surgeon, Dr. Hanley sounds amazing! We are hoping to give Hailey the best possible outlook for the future by going to Stanford. It will mean going through a whole new experience again, but we are definitely willing to do that to help her in any way we can. This week was pretty good. Hailey ended up getting her first cold, so we had to cancel the swallow study for Wednesday. The speech pathologist that we work with explained that having junk running down her throat could make her fail the swallow study even if she really can swallow now and suggested we wait. So, we have scheduled again for this Wednesday. If Hailey can pass the swallow study, we will begin the long process of getting her completely off the NG tube.  It sounds like there will be several steps to do that.  I think it goes something like this: We start with small tastes of formula by dipping her binkie in formula and letting her have a drop at a time.  Then, when she handles that okay, we start training her stomach to get used to stretching and shrinking (she has never really experienced that because she is on a continuos feed) by taking a very large syringe, plugging it into the end of her tube, and filling it with formula, letting gravity take it down the tube (this is what they call a "bolus feed"), several times a day instead of the continuous feed. Then, once she gets used to that, we do as much bottle feeding as we can get her to do an do and put the rest in the syringe for a bolus feed, gradually making our way to bottle feeding only.  Then, if she can consistently gain weight with just the bottle, we can take the NG tube out.  So, this will likely be a weeks-long process.  The speech pathologist wants her to be on a bottle well before surgery so that we can get her back to a bottle as quickly as we can after surgery.  If she fails the swallow study, we will have to wait another 2 months to do another one, so we are praying with all our hearts that she can pass.

We did have to take Hailey to the ER again this week, but it was not a traumatic experience like last time.  She has been pretty stuffy with her cold, so I asked some other heart moms if I should watch for anything in particular. A few of them mentioned keeping an eye out for something called "retracting" and suggested I look it up on youtube so I would know what it looks like. It is basically the motion that we would make with our diaphram when we are really winded. Somone who is retracting is breathing hard enough that their stomach kind of sucks in under their ribs a little bit when they breathe. Hailey has some of this all the time, but after watching a youtube video on what it was, I realized she was doing that with every breath instead of just once in a while like usual. So, I called my pediatrician.  The pediatrician who is used to seeing Hailey was the on-call doctor for the day, so he was not at the office. Since he knows Hailey's history better than anyone else around here, they suggested I just take her to the ER so that they could call my doctor and ask whether we should be concerned, and so they could do a chest x-ray if they needed to. Ben had needed the car for work, and since the swallow study had been cancelled, I had told him it should be okay if he took it, so I didn't have a car to get to the ER.  (We are working on getting another car by the way--just haven't found one yet, lest you all think we are crazy :-) So, I called some of the amazing people from our former ward and our current ward.  One of my dear friends was able to take my girls and another one dropped everything to drive me to the ER (thanks ladies! You are great!). My friend from our ward stayed with me at the ER, which was nice because she has a medical background and she watches Hailey for us so we can get out, so she was able to help me answer questions and get through all the hoops we have to jump through when we have to take Hailey anywhere they aren't really too familiar with her.  Anyway, we got a chest x-ray to make sure it all looked clear, no pneumonia or signs of congestive heart failure, so we were good to go. Her oxygen saturations were pretty low, so they had me take her back to the pediatrician's office to get those checked out again on Thursday.  So, it was a little crazy, but I wasn't scared because Hailey looked fine the whole time and aside from the heavier breathing and being a little sleepy from being worn out was doing just what she always does.  It really wasn't scary at all and thanks to all my wonderful friends, all the different doctors appointments worked out too. 

I can't express how much all the prayers and help and support you have all given us mean to us. We are in awe of everyone's kindness and concern toward all of us.  Thank you all! We continually pray that each of you will be blessed for helping and serving and praying for us.