Hello again...

I turned two weeks old yesterday. Where does the time go? I made another small step to improve. My oxygen was completely turned off. I am breathing on my own all by myself. I know, I'm like all grown up now. I'll be looking at colleges next week. But seriously I feel better and I look better. All of the fluid I have retained is almost gone. They say the camera adds 10 pounds but for me it was just the excess fluid. You'll see how much better I look in the pictures below.

Of course my mom came to visit me again today. And of course she got to hold me. I was awake and alert while she held me too. It was awesome. She didn't get any pictures of us together today because she was holding me but I'm sure she has our picture in her mind and in her heart. :-)

I finally got to meet my big, big, big, big brother Isaac. He usually stays home and watches the other kids while my parents come to visit. He wasn't sure what to do when he came. He just kind of pet my head like a kitten. Too bad I couldn't bite his hand. Cara came with my dad tonight too. She got to hold me. She liked it until her arm went numb. I enjoyed having them here with me. I didn't bother to open my eyes for them though, that would have required too much energy. I cant believe what they did to me. Are you ready for this? They gave me a Mohawk! Or as my dad would call it a Brohawk. Whateva, as soon as they left I had the nurse fix it.

I still don't know when I'm going home yet. I'll probably transfer back to Christiana hospital before I go home but before I do that I have to figure out how to drink from a bottle. Patience people, I'll get it.

Thank you again for your thoughts and prayers. Just because I'm doing better doesn't mean you can stop worrying about me. 

<3 <3 <3 <3 Johnny

                                                              Here's Cara holding me.

My Mohawk.

                      My dad holds my hand every time he comes to see me. It's our thing.

                                                                  My visitors today.

Look Mom, No Tubes!

Today I'm two weeks old. It's been a long and bumpy ride for me and my family. I'm still doing well and making progress though. Yesterday my mom came up to see me, twice. The drive is getting to her. Luckily she has figured out the best to come and go to avoid traffic issues. She's so brave. The best part of my day is when I see her.

What is some of the progress you ask? My breathing tube was removed! It feels so amazing to not have that thing hanging out of my mouth. I'm still on oxygen to help with the transition off of the breathing tube but it's just the kind that a little old lady wears to bingo night. The tubes goes around my face and two little tubes go in my nose.

The best news of all- MY MOM GOT TO HOLD ME! ! ! ! ! ! It was a special moment for us. I kept my eyes open for a few minutes and just enjoyed the view. It was kind of difficult for my nurse to position me to her. I still have an IV attached, feeding tube, heart monitor, and electrodes on my head. It was well worth the difficulty to be in her arms. The feeling of her holding me was indescribable, for both of us. Something that I constantly thought about. And the moment had come. It was everything I hoped it would be.

I could still be here for a week or more. We're not really sure how long. We just enjoy and appreciate the progress that I continue to make.

Enjoy the pictures of me and my momma! <3 Johnny

                                                       There's the moment I hoped for!

                                                  My dad holding my hand.....again.

Some Visitors and a Video!

For now all I have to report is I was visited by some very special people today! Cara, Olivia, and Matthew came with my mom and dad. It was good to hear their voices and feel their touch. I didn't bother to open my eyes for them. I just made them part of my dreams instead.

I won't get my MRI until tomorrow (Monday) evening. That means I won't know if my breathing tube will be removed until then. Everything is looking good though and the chances are strong that I will be breathing on my own by Tuesday.

I still can't wait to be held by my mom. Until then please enjoy the pictures and video of me being awake.

<3 Johnny :-)

                                                              My special visitors!

                                                 That's Olivia checking up on me.

                                              Cara is touching me. I liked it. :-)

           This is the atrium inside the hospital. It's very nice here. I'm glad to be in such good hands.

Weekend Update

Hello again! I am still continuing to improve! My mom visits me everyday and my dad was able to come see me on Friday. I can't wait to come home with them. Who would have ever thought that anyone would want to hear a baby cry and wake them up at night? It will be my pleasure to do so! I'm sure that I won't be sleeping far from them for a very long time when I get home. My mom has a bassinet right next to her side of the bed. I doubt she'll let me sleep without holding her hand all night long.

Some of the things that have changed with me- My IV has been removed from my belly button and placed in my leg. My oxygen level and ventilator settings continue to be lowered, I have to be able to breathe 100% on my own for a few days before I can come home. All of the electrodes on my head have been removed. That means my seizures are under control. I am no longer being fed through my IV. I am being fed through a tube that goes into my stomach. It actually goes in through my nose and into my stomach, it's not comfortable. It's an improvement but I'd much rather be in my momma's arms being fed. And when my parents come visit me they don't have to put on gowns and masks anymore. Though my mom tells me she misses dressing up...

I'm all swollen and puffy from retaining so much fluid. You can kind of tell in my pictures. This puffiness is from all of the fluid I've retained. It should go away as I move around more and go potty in my diaper.

They may give me an MRI to look at my lungs sometime this weekend. This wasn't supposed to happen until Wednesday of this week but I am improving enough that they want to test me early. If all looks well with my lungs through the MRI I may have my breathing tube removed.

Thank you all again for your support and prayers. There have been some amazing people who have helped my family out at home too. Meals have been brought. Friends and family watch my big brother Matthew so my mom can come up during the week. My Honey (that's grandmom but she's too young to be called that) has spent countless hours at my house so my parents could come see and be with me. My family has gotten flowers, cards, calls, texts, and emails asking how I and they are doing. I am a very thankful little boy!

On my next post I hope to have good news about my MRI. And if there is good news than that means my breathing tube can come out! And my mom can finally hold me in her arms!!

<3 <3 <3 Johnny

          That's me with my eyes open! It's not what I wanted the view to look like but I'll take it!

   Michael and Olivia made these for me. They're hanging on my wall near my bed at the hospital.
   It makes me almost feel like I'm home. :-)

    That's my mom all dressed up like a doctor. She looks like she knows what she's doing doesn't she?

Under my little hat are about a dozen electrodes. They check the electrical current in my brain to be sure my seizures are under control. It seems like the medicine is doing it's job to help me with them.

                   This is what the nurse made me at Christiana. My dad got a picture after all.

That's my dad holding my hand when he came to see me! I was really uncomfortable and squirmy when he got there. Then I fell asleep and so did his right arm but he didn't dare move.

My Trip to Philly

Ready for the good news??

Since I've been at CHOP they have been able to lower my oxygen level to 40%! Compare that to 100% when I was at Christiana. I am completely off of the forsaken oscillator (I couldn't stand that thing!). I am not quite breathing on my own yet though. They still have me on a ventilator but I am doing most of the work. I haven't needed any FFP, platelets, or blood products of any kind. I am off of the blood pressure medicine and the steady morphine. I am able to open my eyes and respond to my parent's touch. Its so good to be me again!

The nurse did notice some weird twitching that I was doing. She followed her intuition and had my brain waves looked at. The doctors put 12 electrodes on my little head and found that I was having seizures. Possibly the whole time I have been alive but we're not sure. I'm just glad they caught it. I was put on two different medicines for the seizures and it seems like they are under control.

My mom and dad came to visit me and I was actually able to open my eyes and look at them. It's good to finally have faces with the names! I could tell that they were relieved because of my progress. They spent a few hours with me until the doctors kicked them out because of the snow. They had to drive home in the bad weather. It took them 3 1/2 hours to get home. Good thing they love me that much!

The doctors and staff here at CHOP have done such a wonderful job helping me. I am truly grateful for them. I could still be here for a week or more but I'm feeling good about what's going on. Thank you everyone for your thoughts and prayers. They really do help me and my family!

Please sign up for email updates on my blog to be as up to date as possible. And look forward to some pictures of my mom all dressed up like a doctor and me with my eyes open on my next post!

See you soon! <3 Johnny

That's me at my new spot, CHOP in Philly

This is my nurse, Laura. She took excellent care of me.

Though she was kind of flirty with me. I mean, come on honey

I'm a little to young and preoccupied right now...

My mama! I want to be held by her as much as she wants to hold me.

There's my name in lights.

Here I am getting some much needed shut eye.

My Second Day on Earth

My first full day was scary. We already knew about several problems I had but some of my conditions worsened. My second day is when the doodoo hit the fan.

Because of my inability to breathe properly I had to be put on an oscillator. In order for this machine to do its job they had to medically paralyze me. This stopped me from moving in any way. I was laying there as if asleep. Unable to breathe at all on my own, unable to open my eyes, and unable to respond to being touched. It was tough for my parents to see me like this. I had to be put on blood pressure medicine too. All of this was stressing my little body out. The oxygen level that I was on was at 100%. That's as high as the machine would go. They tried to wean me off of the oxygen one point every hour. I would show progress and then I would get worse and the oxygen would have to be put back up to 100%. Plus the oscillator was beating up my little body.

This was all on Friday the 17th. I didn't improve at all over the next three days. The best part is that my mom was at the hospital with me until Saturday recovering from her C section. She would come and visit me and just sit there touching me while she was crying, trying to be brave but it was too much for her to bare. My dad went home for a few hours a day to see the other kids. Mom would stay with me. I wanted so badly to tell her that I knew she was there and that I would be okay but I couldn't. After all I was only a few days old. My mom had to go home but she and my dad and other family members would see me a lot on Sunday and Monday. The nurses were all very nice and caring while my family wasn't there. One of them even made me a little crafty thing that said my name. It was cute but apparently no one got a picture of it (thanks Dad).

I continued to be given blood products- FFP and platelets still. And I even needed RBC's (red blood cells) because of all of the blood they had taken for testing. My doctor had a talk with my parents about me possible needing a very scary procedure called ECMO (extracorporeal membrane oxygenation). Follow the link to learn more about this procedure- http://www.wisegeek.org/what-is-an-ecmo-machine.htm This can't be done at Christiana and it was decided that I would need to be sent to another hospital. There are only three hospitals in the area that can do this. My parents and doctors decided it was best for me to go to the Children's Hospital of Philadelphia (CHOP). I packed my bags and was transported on Monday night. Stay tuned to hear all about Philly but don't get to concerned, I have good news to give!

My First Night

The doctors knew that I was born with a few problems but none of us were prepared for what was to come. I was put on a respirator like device to help me breathe as soon as I was out. I was weighed- 9lbs 14oz and stretched out at 21.5". And I went off to NICU so they could monitor me.

At about 3:00am the doctor woke up my parents and gave them some bad news. They were running on about two hours of sleep and happy to get any sleep at all. That was all of the sleep they were going to get. The doctor told them that I had to go on a ventilator because I couldn't breathe on my own. My liver wasn't doing what it was supposed to but I already knew that. Unfortunately no one else did until then. My liver wasn't producing the plasma and platelets that my blood needs to do its job. And on top of that, with my lungs not functioning properly, there wasn't nearly enough oxygen in my body. I still had a lot of blood in my belly and lungs too. I had taken a turn for the worst and my parents were worried sick.

The doctors started putting all kinds of medicine and other products in me. I was given morphine, FFP (fresh frozen plasma), platelets, and oxygen. That was the beginning of my first full day on earth. What a way to make an entrance!

If you think that was tough then wait until what happened that morning...

 

 

 

Here I am before all of the tubes and IV. Just a breather and some other monitors.

A Little Bit About Me...

Hello everyone! My name is Johnny Tyler but you can call me J.T. or Baby J, or just Johnny. There are a lot of people that are worried about me so I decided to create this blog to keep you up to date and informed. I want to thank all of you for keeping me and my family in your thoughts and prayers. From the bottom of my heart, thank you! It really does make a difference so please don't stop!

I was due to be born on January 22nd but I decided that wasn't going to work for me. I wanted to come earlier and I did. My mom went to the Birth Center on January 15th for a normal check-up. Everything was fine that morning except for my heart rate, it was too high. The midwife at the Birth Center noticed this and was alarmed. She asked my mom to go to Christiana Hospital for a BPP. That's a Bio Physical Profile test. (Stay with me for these medical terms). This test is performed with Ultrasound technology. The other interesting fact was my mom's heart rate. While she was lying there it was over 150 BMP and my HR had dropped to 150 also. For me that's normal but for my mom it was very high. She should have been running a marathon. But anyway, back to me. During the BPP I scored rather low. I scored a 4 out of 10. I had my chord wrapped around my neck a few times and I had a placenta abruption (a bad thing). With this situation I was losing oxygen and losing it fast. The only thing I could do to stay alive was start shutting down organs to preserve my more important organ like my heart and brain. So that's what I did. I shut down my lungs and my liver. I trusted my doctor to see this and know that I had to come out. They did notice and decided to do an emergency C-section on my mom. An hour later my mom was strapped to a table and numb from the chest down. My dad was there acting all brave and what not but he was really nervous too. He was about to lose his lunch and ready to faint. At 7:26 pm I entered this world. It was a little different that I had planned. I wasn't able to cry because I swallowed a lot of blood and my lungs didn't work so well. My parents wanted to hear me cry but I couldn't. I had them worried for sure. I was rushed to another room were they hooked me up to breathing machines and other devices. My parents went off to recovery and I was left with the doctors and nurses in another part of the building. I'll tell you about my first night soon. Here are some pictures to help explain-

 

My mom and dad taking a selfie (they're so cool)

 

Me about 20 minutes old

 

I don't know why they make me wear this silly hat

 

My dad holding my hand

 

One of my big sisters visiting me

 

And that's one of my big brothers Matthew. He'll show me the ropes when I get home.