A Day In the Life

Mom and I went to Whole Foods with Lara and Raphael. We ran into Ellie and Lukas and all ate lunch together. I was so hungry that I held my bottle for the first time. I did it again later in the day and Dad captured it on video.























































Today I sat in my Bumbo chair. My head is still a little wobbly so I am too little to be in there myself. I get by with a little help from my friends.














The rockier the pavement, the better I sleep. Roll baby roll!

Freebird

Well, I know I have not written much lately. It is not that I haven't wanted to. Just that I have so many things going on. I mean, no feeding tube AND I can roll over. I am pretty busy. Then I've got physical therapy and speech/feeding therapy. They are just starting this week, but I have a feeling I am going to go straight to the head of the class. Since it is just me, and they visit me at home, I am feeling pretty confident. I have entertained many visitors and my hosting skills are improving. I always insist mom or dad change a diaper when I have company, then I smile and coo for the fascinated onlookers. I know I have mentioned it before, but even strangers tell me so it must be true. I am so good-looking. Don't worry, I'm not letting it go to my head yet.

My First Hanukkah

Wheeee! I'm so close to turning over. Just a little bit further!

 Cousin Jody takes care of me. When I'm older I'm going to fix her up with some of my friends. She's a cougar!

 Aren't I a good photographer? I had assistance from gram & gramps, but just for a boost. When I get taller I'm going solo.

heh, heh, heh, i've got Grandpa Arnie eating out of the palm of my hand!
Mommy and Me. In from the cold.

My First Girlfriend!

 This is my first girlfriend, Harriet, she goes by Harrie for short. Our mommies are friends. Harrie is a cougar, she's exactly four months older than me. I am the man!

My First Thanksgiving

Mommy and Aunt Karen like pictures of me better than they like me.

Who knew Great Grandma Mildred knew so many dirty jokes?

Maybe if I pretend to sleep I won't have to tell Grandma I've already heard these dirty jokes?

It worked!

At the end of a great Turkey day I was chillin with Grandpa.

Peace out, y'all.

Going Strong

I last pulled out my feeding tube on Tuesday and since then I have been eating like a champ! Well, I was, but now I am just not that into it. I am having a good time, swinging in my swing, bouncing in my bouncy seat, looking in the mirror at myself and staring at the pacifier as daddy dangles it over my head.

Mom has been going to work a lot and I miss her when she's gone. I put on a brave front, I don't fuss or yell. Just giggle and smile when she gets home and cuddles me. On the upside Dad and I are getting to know each other. So far I really like him. If he could make milk he'd be my best friend!

Aunt Karen did a re-creation of Halloween without the poop so you can see how cute I was.

Getting My Beauty Rest

Peaceful, e-z feeling

Wow! I cannot believe I have been home for a week. I am adjusting well to downtown life. Thursday Grandma E and Grandpa Arnie came over and hung out with me while mom cleaned the house and did some work. ew! Once they left i finally had a chance to go outside for the first time. It was already dusk and Dad was out at a gig. I felt like i needed to take the baby bjorn for a test ride. Mom & I were the only two at the park and I wondered if she was a bad mother for having her kid out in the cold and the dark, but it was just so nice to get some fresh air. I was in awe of the sidewalk and the buildings and was all the passerby-ers tried to sneak peaks of me because I am so delicious.



Yesterday mom and dad took me to the pediatrician. We decided to go to SoHo Pediatrics because it was highly recommended and conveniently located. We saw Dr. Wong, she's really nice. There was also a third year medical student there named Ashish. He goes to NYU so mom gave him her card - maybe she can do his school's yearbook. That would be cool! So, the Dr. went well. The best part – no shots for me! Mom & Dad had two each, hahaha. They both received H1N1 and regular flu shots so they could protect me. They are nice! I have to go back in a couple of weeks and I will start my vaccinations then. Just like a regular baby! BI also have to follow up with a pulmonologist and a gastroenterologist, I better get an unlimited metro card.


After the Dr. mom took me to Scholastic to meet up with Gena. We went to lunch at Dos Caminos in SoHo while Dad went to work on cartoons at Starbucks. I was really good. Gena held me for a while. Then mom fed me and I managed to get poop on the front of my Halloween onesie. It was really an impressive feat. The best part was that the restaurant did not have a changing table. I think mommy is going to have to start making different choices about restaurants in the future. 


We met up with Dad at Old Navy and headed up to my very first party! It was in the East Village with families from the mommy group. I was the smallest baby and all of the mommies and daddies wanted to hold me. I loved all of the attention! And the beermilk was delicious! Just kidding Grandma Harriet!


Today is the anniversary of the day Mom and Dad met four years ago in the East Village. To celebrate we are going to lay in bed all day, just like on their first date. Just kidding Grandma Harriet!

Permission for Landing, Granted

What a night! I ate half my bottle for Daddy at 11pm. He tried to get me to take more but he eventually gave in and put in my NG tube. Dad took the 2am feeding and I was zonked so it was more tube time. Mommy tried at 5am and that was really inconvenient for me. I took 10-15ccs and then back to the pump. Same goes for 8am. Mom took off for work around noon, but not before the Drs. rounded. They discussed my case and with M&D's report decided that I'm ready to go home!

I am so excited! And I think this has a lot to do with everyone thinking of me and praying for me. And, of course, amazing genes. Well, except the ones I got that caused CDH. But, so far they have not found a genetic link, so I will stick with the theory that my chromosomes are spectacular.

Mom wants you to know that her "privacy" ban is lifted. We cannot wait to talk to you and I am looking forward to making your acquaintance (I am very formal and polite, thank you!). Of course, I do have to be careful because it is flu season, so break out your Purel!

Super Trooper

I am so excited I can hardly sleep! Tonight Mom & Dad are staying over at the hospital with me. I have no monitors and it feels good to be out in the wild.

There are so many new things to look at in the "Launch Pad Suite" here with Mom & Dad! Well, the ceiling looks pretty similar, but I can see so much more of it from here. Especially when Mommy laid me down on the bed with her, I could see so far! And the lights are so bright, I love it!

With all of this activity I'm just starving. Delores fed me today and I finished my bottle with her - 60 out of 90 ccs. Mom fed me at 8pm. It was just the two of us so she let me start at 7:45. It took me an hour, but I actually drank the whole thing by the bottle. Don't tell the nurses it took me that long. Listen, I'm practically a free man and I want to feed on demand. That's right.

Mom & Dad learned how to pass my NG tube tonight. Luckily they practiced on a dummy. But I'm no dummy, I'm going to take all my food by mouth so next time I rip this tube out of my nose they won't have to put it back in. Wish me luck!

Dr. Fickle

I'll be honest, I'm a little skeptical of my current attending. In the last two-and-a-half weeks she has given me three very different scenarios.

First she told me I needed to go to another hospital. So mom and dad asked around and went on a tour of NYU. They said it was okay, but how excited can you get over a hospital? At least it is closer to home.

Then last week she introduced the possibility of me having surgery to place a G-tube. That stands for gastric tube and instead of going through my nose there is a port directly from the inside of my stomach to the outside. Easy living! But, surgery, that does not sound appealing. I think we should wait a little longer. Maybe I will gain stamina quickly and be able to handle all my feedings all the time. I would rather have the NG (nasal-gastric) tube a little longer. Even though it annoys me and I pull it off sometimes.  So the doctor said our surgeon - nice guy, lifesaver - would stop by to discuss it with us. Never saw him. Was he too busy? Did he not know the attending's plan? Dad thinks it is a scam to charge another few grand for surgery. Hard to say.

Now they are talking about teaching Mom and Dad how to pass my NG tube through my nose. The nurse is going to show them this tomorrow and then they will stay overnight at the hospital in a room alone with me. We are not sure whether or not there will be monitors, we have heard a few different versions of this. After our overnight together I go back to my crib and continue with my observation. I can't wait for Mom and Dad to see what I'm really like at night. All the nurses have told them I sleep through the night. hahahahaha.

Downtown

The Columbia folks are talking about transferring me to a NICU with a lower acuity to work on my breathing and feeding issues. It is a step in the right direction, but not home as I had hoped. If it was just a feeding issue I could go home with my feeding tube. But, since my breathing is still occasionally tachypneic I need my peeps to keep their eye on me. I would like to check things out, but seeing as I'm constantly monitored I am going to send my parents to be the lookout. They are going to look at NYU, Beth Israel and St. Vincent's once they get the information from the social worker tomorrow. I am glad that they will be closer to home so they can spend more time with me and save money on cabs. That's more cash they have for me! I've already picked out the entertainment center I want for my crib. It's got lights and music, and most important - a mirror! Uggh, I am so cute it hurts.

You better work!

Oy! I have been so busy lately! Between eating and sleeping it is a wonder how I have time to carry out the  regular duties of my life. (Heh-heh, doody.) I want to write on my blog but it is so hard to use the laptop with everyone holding me.

Grandma Harriet came in from South Carolina and stayed with Aunt Karen for a whole week. We spent every morning and afternoon together in each other's arms. She sang to me and I cooed and smiled like it was my job.

Writing of which, I'm now able to get a job. Yep, I got my social security card in the mail and my birth certificate. Mom wants me to pay for college by getting some modeling work now. You know, in case I peak early I want to cash in on this time when I'm so gorgeous! But, I'll probably just get better looking every day. Watch out Matthew McCounaughey! Well, you will be old by the time I'm buff, but we might end up competing for the same Cougars.

But, the job I'm most proud of is my dad's. Today in the mail he received this month's Reader's Digest. His cartoon ran on p.50. He is so cool! I cannot wait to see what he draws for me.

Bottoms Up

Thursday was a big day for me. I sat with Delores (rhymes with something dirty according to Seinfeld - I wouldn't know, I'm a baby) who is the feeding specialist here at the hospital. I was able to most of my feeding by bottle - almost 2.5 ounces. There was so little left I did not even bother with the tube for what was left.

Friday mommy breast fed me twice and I took over 1/3 of my feeding that way. Daddy says he has learned alot from me. Just keep your mouth open long enough and someone will put a nipple in it. I gotta go, almost time to open my mouth!

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