April 16 Post

Hello again,

Kristi and Sue went up today to spend time with Carter and I came up about noon and joined them. Kristi was there for "rounds" and they are just weaning off the hydrocortisone which should be done by tomorrow. He has the two holes in his heart we mentioned last night and they will monitor their closure. Nothing life threatening or urgent but they do want these holes to close soon. If they don't close, they can close them with a rather simple catheter procedure. Of course, he slept the whole time I was there.

We called the nurse tonight and Carter has been moved to bed 22. The nurse (Diane) gave him a water bath and she said he just loved it. She asked if we'd bring a bottle of baby lotion so we (and the nurse) can rub it on him so he'll smell good.

They gave him a diuretic this evening to get rid of the some of the excess water (edema) from his little body and Nurse Diane was so excited that he peed 6 oz (I think she said 150cc) in one diaper! This is good news! His weight went down to 7 lbs 14 oz which is ok as he is getting rid of excess water he does not need. She indicated it seems to make him more comfortable and gives him some needed room for his heart and lungs. She was also able to drop his oxygen to 3 liters and 22% so we're closer to our goal as Carter gets stronger. She indicated that if they can get rid of the canula, they may try to move the feeding tube back to his stomach and see how he does with the reflux. This is from the nurse and not the nurse practitioner so we'll see how all this changes over the next day or two.

Still no word on the stomach feeding tube (the G-tube) but we're going to spend (or at least are planning to spend) a good part of the day Friday talking to the social worker, dietitian, geneticist, the president of the Utah Down Syndrome foundation and hopefully talk to a couple of pediatricians on Down Syndrome to see what options exist besides the G-tube.

We really want Carter to have a good quality of life and see of there is something besides the G-tube. We're praying he'll breath better and that his stomach muscle and throat flap will allow him to eat orally.

Nurse Bonnie (from the 1st week) was in Carter's room with another baby (Noah) and asked how Carter was doing and if he was ready to go home yet. Kristi told her not quite but he's getting better gradually. Carter has many friends in the NICU as far as the nurses go and we run into them from time to time and sometimes they stop and visit with us. Nurse Diane (tonights nurse) has been a NICU nurse for 23 years at PCMC and sounded like a grandma, it was so much fun to talk to her and she just loves Carter and put him in clothes that fit and says tonight will be a good night for her. It was a very fun chat with her tonight.

Sorry if this is rambling, we're quite tired and its almost midnight! Thanks for all your love and support and we'll give another report tomorrow. This will make a fun journal someday when we can compile it into something...

Love,
Alan & Kristi