My First Santa Visit

For Christmas, Colby wanted Buzz, Woody, and candy.

Mommy wanted a goodnights sleep.

And Parker wanted to get rid of the feeding tube.

... Parker got his wish that night. He decided to take matters into his own hands, literally. He ripped that tube right out. Luckily we haven't used it lately, so we didn't bother putting it back. Yay for one less tube!

( I just snipped the edges of the tube at first, so we wouldn't have to redo all his tape. Removing those dots and tape hurts his poor skin so bad!)

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!

Secret Clubhouse

Colby insisted that Dad climb into the (cramped) tent with him and his secret club. And since Dad was holding Baby Parker, he got to join too... until Parker made a stink and got kicked out of the club. Apparently thats not allowed. :)

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. :)

Big Day for a Big Brother

This week/month has been so hectic. On Dec 8th Colby became a big brother! And this past thursday, we finally got to bring "Baby Parker" home. Colby has done really well with the change, I think. He's very helpful when we ask him, but not so helpful that he's trying to grab the baby from us. So really, just the perfect amount. He is getting a bit jealous of all the attention Parker's getting though. But I think he's really loving his little brother.

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!

Little Peanut

Today one of Parker's techs called him Little Peanut and it is so true. Our once 5lb 11 oz baby has now turned into a 4lb 9 oz Peanut. His cheeks have lost their chub and he feels so light as he snuggles into your chest.

Part of the reason is because he just won't eat. This is where the majority of his struggles are lately. Since he didn't eat a bottle for two days after birth, he really doesn't know how to do it. He has a test tomorrow where they feed him dye and then do x-rays to see if the dye goes down to his stomach or if it is getting into his lungs. We also have a meeting with a speech therapist tomorrow to learn how to teach Parker to use his mouth, to suck and to swallow. They are also enriching my breastmilk with high calorie formula to try to increase his weight.

I love spending time with him though. I can get him to eat twice as much as any nurse. He loves his mommy, thats for sure! What a cute little peanut.

Tiny Little Tootsies

Loving these little toes!

We went up to see our little guy again today. Oh how sweet and adorable he is. He is finally out of the CICU (Cardiac Intensive Care Unit) He's doing pretty well, they've removed the line that is draining his chest from surgery. That means he's down to three tubes: a feeding tube, an oxygen line (as a precaution), and a heplock in case he needs any meds. His chest is still covered in bandages from his surgery though. And due to his tiny size his skin is too thin, so his little pacemaker is bulging out a lot. So he has padding on his chest for that.

But since he's now out of the CICU, we can be there for as long as we want, and we get to be the parents! We can cuddle our guy all we want, we can feed him and change him. Its great to finally have the opportunity to bond with him!

Its looking like he will have to come home with a feeding tube. He's just not drinking enough on his own. Its scary to think that we'll have to put it in and take it out, but my excitement of bringing him home soon is greater than my fear.

And we have NO idea when to expect him home. We have hopes but we've learned not to trust those. I'd rather him be completely healthy and ready to come home rather than panicking in the middle of the night with a sick baby.

Oh I love that kid. I can't wait to see him again tomorrow!

4 days old

Its a good day.

Parker's Blankie

Just wanted to show off Parker's blankie. Such a sweet wonderful blanket, perfect size for our little guy in his bed. I've had it ready and waiting in my hospital bag for this day.

A few surgery pictures

Well he's out of surgery and doing well. I don't have much energy to post on his latest condition, but thought I'd add a few pics. The first two are before surgery. You can see how grumpy and unhappy he is. The second is post-surgery. He's a lot calmer, although he is still drugged up a bit. Either way his body sure has been through a lot, and I'm proud of my little guy!