Adjusting to our new life at home

Leaving the hospital after Kaitlyn's G-Tube and Nissen surgery was a great feeling and a huge sense of relief.

Little did we realize, the craziness was only beginning! Kaitlyn had a lot of difficulty sleeping and during the next day, she would only take naps if you held her and was fussy the majority of the day. Pretty difficult when you also have a 7 week old baby to take care of too. She also didn't have much of an appetite so we had to do some tube feedings to make up for the food she wasn't taking by bottle. She does have moments where she is happy and wants to play but they are short lived.

Gave a few smiles for Valentine's day.

A home health nurse came to teach us how to use the feeding pump, which will be used overnight while Kaitlyn is asleep. It is pretty easy to use but the IV pole with the machine and hanging feeding bag is difficult to get used to in her room. Although her disease is real and we are aware of it all the time, seeing her room look more "medical" is very difficult emotionally.

Before we left the hospital, they changed her dressing around the G-Tube with a different type of adhesive to keep the tube in place and restrict the movement and pulling at the actual site on the skin. She will have these dressings changed every week for about 2 months or so and then a "button" will be put in where there is just a port and no hanging tube.

We are so glad to have Kaitlyn and Cole back together again. They are so cute when they interact with each other. Because Niemann-Pick disease is genetic, Cole had a 1 in 4 chance of having the disease as well. We are so blessed that he does not have the disease but is a carrier, like Chip and I are. It won't effect him until he is ready to start a family of his own. His wife will have to be tested to see if she is a carrier. Niemann-Pick disease is a double recessive genetic disorder, meaning that both parents have to be carriers and each child born would have a 1 in 4 chance of having it and a 50% chance of being a carrier. I will post more about that later in our resource section.