1 Month Old!

Parker turned one month old yesterday! Seriously, that little boy has accomplished more in the past month than I have in my entire life. But one of his biggest accomplishments, he no longer needs oxygen! It really makes life easier. No more tanks to carry around. No more tripping over long cords. I can't tell you how many times we've accidently yanked Parker's head because we've tripped over his tubes. We're excellent parents, alright. Unfortunately, there have been downsides to this week as well. Parker has both a cold and a stomach bug, and his older brother has those plus he might have pink eye. The amount of puke around this place has been outstanding (and overwhelming!)

But we're hanging in there and enjoying our time together as a family at home. Home is such a wonderful place to be. :)

This little doozy of a pic was from trying to get an oxygen-less picture. He kept making silly faces at me! What a dirty look he's giving me!

Today with the therapist...

Parker's occupational therapist came today. She comes to check his eating habits because of the need to have thickened liquids. Well today I brought up a concern of mine. Parker hates tummy time. He keeps his face planted on the ground and just screams the entire time. He doesn't try to lift his head at all. I figured with spending 8 days flat on his back in the hospital, maybe he's just behind the curve a bit.

So she holds him, starts moving him around to check his head and neck control, and then puts him on his belly. I kid you not, Parker rolls himself over onto his back. She laughs and then puts him back on his belly. So he rolls again, the other way. She laughs again, said he's ahead of the curve and that I shouldn't worry at all. What a way to make your mommy look stupid, Parker!

Perfectly Parker

This image totally captures Parker perfectly.

Here's what he's up to now:
-He's still super teeny. This is a preemie outfit, and fits him perfectly around. But you can see its too short for his arms and his body. Unfortunately newborn stuff still swamps him, though.
-He is so alert. He won't stop staring at you. Its pretty unnerving, actually. His gaze is just so intense.
-He is so active and wiggly. Those long thin fingers are always moving, he is always pulling off his oxygen and also scratching his face up pretty badly. He always needs to be grabbing something.
-He's happiest when someone is holding him. I don't think he's gone a whole night in his bassinet.
-He's eating almost double what the doctors initially told us. However the dr's are pretty impressed and want him to eat as much as possible. We need to fatten him up!

He's just such a sweet little guy!

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