I'm doing well thank you for asking.

I'm doing well thank you for asking. After I pulled out my feeding tube my parents decided to try feeding me exclusively with the bottle. I have been doing a good job with it, I'm so proud of me. I wake up twice a night to eat and I go back to sleep usually. I've have tummy time twice a day and I love it. I lay there all perked up like a puppy. I also went to Chucky Cheese's today. It wasn't really my gig. I slept the whole time but Matthew told me he had fun. I'm like a little baby just like I'm supposed to be. If you didn't know any better you would have no idea what I went through. I am thankful that life seems to be normal.

What is a post without pictures?

<3 <3 <3 Johnny

This is my place of comfort. I hang out in this little shin dig a lot.

This is our cat Regina. She has taken it upon herself to be my guardian. I'm pretty sure I can handle this on my own but I appreciate her effort to keep me safe.

I was happy right until the camera came out.

Olivia hearts me... and I heart her

Yesterday was one whole week since I've been home. I'm adjusting well I suppose. I don't really have anything too exciting to report. I get up twice a night to eat and I usually fall back asleep though I have stayed up for a few hours just to throw my mom a curve ball, I can't make it easy. I've been to two different doctors to be checked out. They have found everything to be normal with me. That's a relief because I like being home. No need to go back to a hospital.

I just pulled my feeding tube out an hour ago which is why I'm up blogging right now. I'll try to take all of my bottle and then moms and pops will put it back in the morning. I'll be sure to make it difficult for them. I squeak when I breath still. That is supposed to go away as my lungs and throat heal from the breathing tube. I have the cutest little snore when I'm sleeping too. And on another note yesterday was my momma's birthday. Happy birthday mom!

See you later! <3 <3 <3 Johnny

That's me without my tube. I want that thing out permanently!

My mom and her birthday cake. My dad made it (bought it) all by himself!

My mom being silly. She didn't think I'd post this one.

This is my sad face on the way to the doctor.

Life at Home

I've settled in pretty good here at the ranch. I've been awake each night for about three hours at 3:00am. My mom watches movies with me on her Kindle. She's getting all caught up on her shows. I'm getting used to the racket that the others make when their home. My mom has to take me into her bedroom to feed me so I can concentrate and focus on eating. It seems to help because I was struggling to eat for a little while. She has to hold me just right and give some chin support for me to take my bottle. I still use my tube for about half of my feeding. My cry is getting louder which is good news because I plan to have a career as a singer.

There are plenty of siblings to hold me and feed me. They argue over who gets to hold me next and who held me last. I usually fall asleep in someone's arms. And someone usually gets sent to their room for getting impatient and too loud.

My home nurse will come tomorrow and check on me. She'll make sure my parents have me under control and that they're taking care of properly. They have a few questions lined up for her.

Thanks for checking in on me. TTYL <3 Johnny

Can I get cuter? Don't think so!

Sleeping with my momma. That's my phone in the background. The other kids think I got one too early, they're jealous.

The feeding tube is convenient because anyone can feed me.

My dad and I. AND my big bro photo bombing my dad with a kiss. He's adorable too.





Olivia will hold me for hours at a time.

This cat must not know what curiosity will do to her.

I'M HOME ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! !

I'm finally home! I thought the day would never come! What a wonderful Valentines Day for me and my family. I have to admit that I (my dad) is nervous to have me home. While everyone is confident that I will be fine it's still scary to be away from the hospital. So much for the quiet peace of the NICU. The ride home in my dad's car was loud and bumpy, I haven't been put down in 5 hours, my siblings are noisy, and I wouldn't have it any other way. My mom and dad have taken infant CPR classes, don't shake a baby, choking, and how to safely put a baby to bed. They could have taught the classes ;) I feel safe in their hands. I will definitely change the dynamic of how this family works. I'm sure it was weird for them to have a baby and not have a baby at the same time. Now that I'm home I plan to do all of the things that a new baby should do when home- wake up late at night, spit up, explode my diaper, ahh good times.

It really hasn't set in that I'm home. I just overheard my parents trying to figure out how to come see me tomorrow. Driving to Philly was getting tough I guess. The cafeteria food was getting old for them. My mom always brought an overnight bag incase she had to stay with me. The winter weather sometimes made it tough for them to come up (remember the first ride home took them three and a half hours). Those days are all over!

I still have my feeding tube in. My parents had to show the nurse that they could put it in if it came out. I cried for them and made them feel horrible about doing it. Imagine- I'm crying as loud as I can while my dad is holding my head and swaddled body to keep from moving and my mom is trying to smoothly put a tube up my nose and down my throat. The nurse is telling us to keep calm and don't get frustrated. We were all sweating when we were done. If that thing comes out were going to the doctor, forget all that.

Enjoy the pictures of my new surroundings!

<3 <3 <3 Johnny

Last picture of us before we left. I wasn't waking up for it.

In my Olivia's arms.

This is all of the stuff we were sent home with. The picture doesn't do this pile justice.

Doesn't she look happier now that I'm home? YES

This is where I'll be getting most of my shut eye.

Mamma I'm Coming Home!

That's right! I'm supposed to come home tomorrow! I was SO excited when I heard the news. Oh my goodness its been a long and sometimes scary ride. Altogether I couldn't be happier. Everything has fallen right into place to ensure my health and safety. So many wonderful people, the doctors and nurses, family members and friends, everyone has been amazing. My family and I are eternally grateful for all of your thoughts and prayers sent in our direction. We will forever feel in debt to you all.

I realize (in my youthful age) that we are all here to help each other. If none of us experienced any adversity then no one else would have the opportunity to serve. Sometimes we are the one's that get to help and other times we are the ones that need the help.

I will come home with my feeding tube unfortunately. That's okay I'm sure I'll be off of it soon. My mom will be able to give me the undivided attention that I need to be on the bottle completely. It seemed like forever I would have to wait until that day I want so badly and here it is.

I can't post without pictures, you know that. Take a ride with me back to when it all began...

<3 <3 <3 Johnny

The Feeding Tube and Cara Carrera

My parents had the "opportunity" to take the Nasogastric intubation (NG) class today. That's the training session for my feeding tube should I need to come home with it. They passed the test on how to remove and install the tube so I guess I should be relieved. We are hoping that I can take all of my food through a bottle but it isn't looking so good. They just give me too much and I get the fat happy sleeps in the middle of my eating. Then I fall asleep naturally and I get the rest of  my food through the tube.

I've been taken off of my oxygen completely twice now but I can't sustain it by myself. They put me back on it for a half day and try again. I can go home with a feeding tube but I can not go home on oxygen. That's the one question mark for now- when will I be able to breathe on my own? Please keep me in your prayers. I'd like to get outta here soon.

Enough about me. Let me tell you about my sister Cara. Her full name is Carrera, like the Porsche sports car. My dad can say he has an '02 Carrera and not be lying about it. Maybe one day he'll have a real one. Cara paints her nails on a daily basis. She has 85 different colors to choose from, seriously. She is a huge helper at home. The kind that just does it without being asked. She has changed three times more diapers than my dad has. I'm sure that she will be wiping my tushy too. Cara can be very sensitive. She was very upset when we weren't sure how I was going to do in the long term. She gets sassy with my mom way too often and she has a soft spot in my dad's heart. All girls have that spot with their dads. Just ask one. She is a very responsible girl. She has taken baby sitting classes and my parents are more comfortable with her home than with the 'other' older sibling. Cara loves county music almost as much as she loves making cupcakes. She got a guitar for Christmas but she is struggling to play it I hear. Don't worry, she'll get lessons soon. If you ever need cupcakes for a birthday party please let her know her rates are reasonable ;) Cara has an amazing sense of humor. Whomever marries her will never have a dull moment. Fun fact about Cara- She just learned last week that Delaware was a state in the United States, for real. We laugh with her though, not at her. I can't wait to get home and get to know Cara more. I am positive that she will be feeding me and taking extra special care of me. She will be known as my second mom for sure.

Thanks for checking in on me! See you soon! Enjoy the pictures!

<3 <3 <3 Johnny

 

Do you like my heart shaped lips? I get them from my dad (lucky me) 

Home in my momma's arms

 

 Cara loves to hold me when she visits