Look how far we have come

I just realized that it has been a long while since we posted last. So sorry!! Carter has been home now for 2 weeks. We are back into a routine - although a slightly different routine because Carter really can't go anywhere and risk getting sick. So we just hang out at home and try and make it outside for a daily walk around the block. I stocked up on projects to do while we were trapped in our house and so far nothing has gotten done - oh well - it is much more fun to just hold and love Carter.

Carter is doing so well we can hardly believe it. So far (I'm knocking on wood right now) he has not had a single reflux episode since the surgery. He is still receiving medicine to help with reflux but so far it has been really good. This is so good because the reflux issue was awful and I felt so bad every time he went through an episode. I never realized before how bad reflux can get - I now have so much more empathy for families who are dealing with this issue!! It is NOT FUN!!

Carter has finally remembered how to laugh and smile really big. He lost that for a while after surgery - but it is definitely back and so cute!! Alan can get him to really laugh when he tickles his neck - we will have to try and catch that on video and post it. He has definitely got his personality back.

And with that he has also remembered how to pull out his tubes - darn. We have resorted to having him wear the newborn mittens so we can try and keep the tubes in. When we have to replace the tube after he pulls it out - it is not pleasant because it makes him cough and that makes him cry. Coughing and sneezing are about the only things that are still painful for him as he is still recovering.

His steri strips fell off on Saturday so I am posting a picture of his scar. He is currently on three medications - two for relux and one diuretic for a total of seven doses a day. This is a far cry from where we were with eight medicines and about 20 doses a day prior to surgery.

Another thing we have been working on is feeding him. I decided that with the reflux issue seemingly under control that I would mess with his feeds a little bit. I figured if he wasn't throwing up that maybe his stomach could hold a little more food. So I tried it and it has worked. I now feed him 105 mL every three hours by sending it through a syringe into his tube. With this we also give him a bottle - but that isn't working so much. He will drink about 1/2 ounce and then he is done - that is obviously not enough to sustain him so in the tube the rest goes. We really would love to have him learn to eat with his mouth - but this will probably take a lot of time, practice and patience.

We have an appointment with the Cardiothoracic Surgery Nurse Practitioner and the Cardiologist on Wednesday. We will post an update when we have one.

Again thank you for all your prayers on behalf of our family and Carter. We are truly blessed to have so much support!
Love,
Kristi and Alan