The Beginning

Well, we are all together again at last! We are so grateful to all those who helped take care of our kids through all the craziness! We can't tell you how thrilled we are to be back together as a family.  The girls are so excited to spend some time with their new baby sister. I thought they might resent the new baby becasue of all they have been through, but they have just been so sweet with her and genuinely happy to have her. They really want to feed her and dress her and take care of her, which is all so cute! 

Hailey seems to love the attention of her older sisters (as long as it isn't too rambunctious).  She is doing well.  The doctor has told us to increase the amount we are feeding her because she is a little under the weight they would like to see at this point.  So, we have upped the rate on her feeding tube a little. It has been a little bit of a challenge trying to pump for her and get rest and still take care of things, but we have had help from people in our ward and people in our families' wards and friends and neighbors. We never could have done this without all of you! We know that there is still a long road ahead, but we know that we are not alone thanks to all of you!

We met with Hailey's speech pathologist on Friday. She has us working with Hailey to get stronger neck muscles, which will help her learn to swallow, and also working with the binkie so that she will have the endurance to suck for long periods of time when she eats on her own.  It sounds like we will do another swallow study early in August.  That study will determine whether she keeps the NG tube (which goes through her nose into her stomach), can start eating some by bottle, or will have a G tube placed (a G tube is surgically inserted in the abdomen).  It sounds like the most likely scenario would be a G tube. I am not thrilled about the idea of another surgery, but the speech pathologist said that a G tube is better in some ways because it doesn't irritate the back of the throat or the nose like an NG tube.  Plus, the fact that there is a tube going into her stomach makes Hailey's reflux worse apparently because it holds the flap over the stomach open (reflux for her is the same as what we would call acid reflux in adults).  So, that will be yet another adventure if we have to go that route.

We will be meeting with a pediatric cardiologist next week to see what we can expect as far as the other surgery. It sounds like the cardiologist will monitor her and then at some point she will have another cath surgery to place dye to see what her vessels have done and determine how and where to do that surgery. 

On the 22Q deletion front, we have found a foundation that has a website for 22Q and have learned a little more about it.  There is a very broad spectrum of severity, so we don't really know what will happen until Hailey shows us what she needs and is capable of, but it sounds more promising than we might have thought.  It sounds like most people with 22Q are able to walk and talk and do okay in the long run although the road is bumpy along the way.   

As hard as this has been for us, we feel like Heavenly Father has blessed us so much through so many of you! We have been sustained by your faith and prayers.  We are learning a lot about ourselves, about Hailey, about our faith and trust in Heavenly Father and His wisdom in all of this.  We truly have so much to be grateful for.