My favorite Christmas present

Long Day

Here's Parker resting after his long day of doctor's visits. We had follow-ups on his surgery and his eating problem. And... they didn't go that great.

First they wanted to check his incisions. His pacemaker looks great, its not sticking out of his belly quite so much. Thats due to his weight gain, he is FINALLY over his birth weight! 5 lbs 14 oz, still quite small. His main incision over his heart is not doing that great, it actually got worse than last week. There is a hole in his chest the size of a pencil eraser that keeps oozing. It is healing, just not as quickly as they were hoping. So thats still bandaged up.

Then we went to the swallow study. I guess I should explain Parker's diet first. I pump breastmilk for him, but since he's so small he needs extra calories. So we mix 6 oz of breastmilk with two unpacked teaspoons of Similac. Then we mix four oz of that mixture with one packet of Simply Thick to make it 'nectar' consistency. We have dubbed it "sludge" in our house because its so thick. He needs to have the thicker consistency because he was aspirating (or breathing in) his food into the lungs and it could lead to pneumonia. Then as he's eating we have to carefully watch his lips and fingernails for any white/blue coloring, to make sure he's not aspirating.

They do the swallow study in a big room with a little tiny chair for Parker. They mix liquid with barium so it shows up on x-ray, and then they have a continuous x-ray to see if the liquid goes into his lungs as he's eating. Well, he aspirated again. This time he did cough, so thats a good sign. But then he started turning grey and lethargic, and the doctor yelled for me to turn up his oxygen quickly. Luckily he returned to normal quickly but it still scared me.

And now the worse part. We have a therapist coming to our house weekly to work on Parker's eating skills. Well she told me that its fine to use thin liquids at the beginning of the feeding to get him 'used to them'. So we've been doing this for about a week. When I told the doctor, she FREAKED OUT. Apparently thats ok for most patients, but cardiac patients are different. So for the past week we've been encouraging him to drink thin, where he's been aspirating every single time. I feel so guilty. I've been causing harm to my poor child. :(

Just with everything going on, I wonder why Parker was sent to me. I have no idea what I'm doing, and it looks like I'm just making him sicker. This little baby is a lot of work!

Amy

Exhausted

I thought I'd post to let everyone know that we're alive. We are SO thrilled to have Parker home with us, but gosh its a lot of work. He has to have special food that requires a three step mixing process, and is quite grumpy. He never sleeps longer than three hours and ALWAYS WANTS TO BE HELD. Even when he's asleep he prefers the warmness and comfort of his parent's bodies. Add an older brother who is insanely jealous of all the attention of Baby Parker so he constantly is naughty? We are exhausted. We survived Christmas and the hustle and bustle, but I really just wish we could get into a nice pace and start to enjoy this time. Also Parker has had 4-5 appointments per week, so that is pretty difficult too.

No picture, because I'm too tired to grab my camera.

But we're home. And happy. And sleep-deprived. :)

Amy

A Merry Little Christmas

Here's a sweet picture of my little peanut. Its a special little guy who can fit into his own Christmas stocking, and look adorable while doing it. Wishing a Merry Little Christmas to all of you who have supported us and cared about us!

Grins

One of my favorite things to do is hold him and watch him as he sleeps. His face bursts into the biggest grins, and I know he's happy to be here with me. :)

Coming Home!

They finally let us take him home! (On thursday) He barely fit into his carseat, one ounce to spare. Even though he was full-term, he's wearing preemie diapers, preemie clothes, an oxygen mask, and a feeding tube. He wasn't too thrilled to be in his carseat, but loves being at home with us. He is such a cuddler, he NEVER wants to be put down. Which is an easy request, we love to cuddle him!

What a stinkin' cute little guy.

Really Quick

Just want to announce that Parker will be coming home tomorrow! Thank you for all your prayers, it looks like they're working!