Two Steps Forward, Three Steps Back

Today sucked! I know, harsh language for a boy my age, but it just wasn't my day. Things were going just fine this morning when mommy called at 7am. Nurse Jamie had given me a bath and kept my happy through the night. But around 10am I just was not getting the attention I needed so I screamed as loud as I could. My punishment? Back on C-PAPP for me and no feeding by mouth today.

When Mommy spoke to the nurse today at 11am she scared the crap out of her by saying that I might have a collapsed lung. Mommy and Daddy rushed up to be my side. By the time they got here the Drs. had done an x-ray and found that my feeding tube was in the wrong position. It has now been repositioned, drats!

The highlight of my day was when the twins sharing my pod got an x-ray. Mom & Dad were told to clear the area. Mom said, "I'm not leaving my baby to be exposed to x-rays" and disconnected me from the C-PAPP and all my monitors. I only got to go a few feet down the hall, but it was amazing! I'm thinking tomorrow I'll rip out the feeding tube and get the heck out of here for a few hours.

 
 

Baby Steps

This weekend was pretty good. They finally stopped trying the C-Papp on me. I just had a conversation with my surgery resident, Kevin. He said my breathing has been a bit faster without it, but since I am being a good boy and I took a 40cc feeding today by bottle he is willing to let it slide.

On a more important note, today I discovered something new - me! There's a mirror in my crib and I now see what everyone has been saying about me - I am adorable! Aunt Karen is teaching me to salsa dance and I am taking it up quite well for someone laying on his back.

 

 

Watching the Gators win is sure exhausting!

CPapp, C-Schmapp

Every time the Drs. come around they talk about how well I'm doing. However, not one of them has mentioned my going home. It is really annoying me, as I think I'm ready. But, I guess if I need to stay here and be monitored than that is what I will do. No sense going home just to be rushed back here. After all, I have been living with an undeveloped lung for the past 8-9 months, I don't want to push myself TOO hard!

When mommy tells my previous nurses how well I am doing they are all amazed. "No CPAPP?", "Taking to the breast right away?", Tolerating all his feedings?" I hear them say. My nurse from last week, Tweetum, came to see me tonight. Mom had just finished nursing me and I was laying back enjoying the milk drunk when the milk came back up through my mouth and nose. It was hysterical! I acted pretty cool about it, not showing too much emotion, but mommy was just laughing. I managed to soak her pants pretty well. I think she was happy because more and more I'm turning into a regular baby and the conversation for parents is about body fluids and functions, not tests and medications.

Look Ma - One Tube!

While others might cause traffic jams to protest Kadafi at the UN, you would not believe the commotion in my pod! Today they took my CPAPP out. They are still watching me closely because my breathing is tachypneic, that means that it is too fast. I have not noticed much of a change between things without the CPAPP, except I am much more comfortable. This afternoon I slept like a baby. I am now down to only the feeding tube, which has been transfered from my throat to my nose. This should give me a little more space to work on my bottle feeding. I am going to try breastfeeding today. Two weeks old and I am already getting a little boob action. Not bad for a guy my age!

Freedom

Well, rumor was that my IV was coming out today. It was not being used for nutrition anymore, but the Drs. wanted to keep it in in case I did not tolerate my food. There was no talk of taking it out during rounds this morning and frankly, I've had enough. So, I ripped out everything: IV, CPAPP, feeding tube. The whole lot! The nurse wasn't so thrilled with that. She put back the CPAPP and the feeding tube. I showed her though, I pooped while I was sitting on her lap and it got all over her pants. hahahaha! I mean, I feel terrible about the whole incident.

Feeding Frenzy

Now that I have been on breastmilk for 3 days my diapers are starting to get interesting. Today Aunt Karen and mommy changed me and I peed on them both and then a little poop to round it out. Then when daddy and mommy changed me later I repeated the performance. Now THAT is what little boys are made of!
Today mom fed me 25ccs of milk through a bottle. The rest went through my tube because I get so tired from all the work of eating.
All the doctors and surgeons who come to visit me say how well I'm doing. I try to be modest, but I am pretty awesome. Mom keeps asking when I can bust out of this place but the nurses and doctors are firm with their answer and are putting all of the pressure on my performance. It is tough being a baby! One of my surgeons, Kevin, did say that he feels my status has moved to judging my progress hour by hour to day by day. This made me feel a lot better, although it makes planning my fall very difficult!

Moving on Up

Today was pretty exciting. Grandpa Arnie came to visit me first. Then Aunt Karen showed up and played me some Barry Mannilow music - don't tell Daddy! While the music was playing I got to put on my first outfit. It is from one of mommy's sorority sisters and it has lions on it. So comfy! Mommy came and held me again. While we were cuddling I was fed through my tube - this time 20ccs of breast milk. So satisfying for my tummy!
Later on in the day I got switched from a warming bed to a crib. I can't wait to show off my new digs to mom & dad tomorrow!

The First Supper

Tonight is a big night for me. Two residents just came around and removed my arterial line. That came from my belly button and I've had it since my birthday. I have to say, even though I've had it since I was born I don't really miss it now that it is gone.
But, the most excitement is soon to come. My nurse, Adrianna, is preparing a delicious meal for me and is going to feed me through a tube that goes right to my belly. It may not seem like a big deal to you, but it beats that junk they've been giving me through IV! I love Adrianna! Thank you for giving me my first meal. (But mommy made it - she's cool too!)

Take a Deep Breath

Thursday, September 17
Today I was extubated. That means they removed the breathing tube that went in my nose and went down my throat and kept air pumping into my lungs. It also means that I took my very first breath on my own! The bad news is that now I have this other source of oxygen that looks like one of those beer hats and it is noisy and wet and makes me cranky. Now when I'm upset I can cry and sound comes out.

Best-Case Scenario

Tuesday, September 15, 2009
After holding stable conditions for the last few days I was able to undergo surgery early this evening. The surgery was a success and the hole in my diaphragm was repaired. I am on the road to recovery. My parents and me appreciate everyone's support over the last few days. I can't wait to meet everyone!

Our Little Jokester

Thursday, September 10
Due to a condition called CDH (Congenital Diaphragmatic Hernia) I was transferred to the MS-CHONY NICU where I wait for my levels to stabilize before undergoing surgery to correct my hernia.

Getting to Know Me, Getting to Know All About Me

Wednesday, September 9
@ 4:15 p.m.
8 pounds, 2 ounces
20.5 inches
New York, New York