Update on Peyton

Dont have much time but here is what i wrote to the family and on carepages....i'll catch up with ya'll more later once i have wireless.

the 13th:
just checking in real quick at the library here at the hospital. I guess they dont have wireless like we expected in our room so it will be a while till pictures are up. Peyton was born at 9:30 am. He weighs 9 lbs .5 oz. and was 19 1/2 inches long. We didnt get to hold him or anything before they took him to NICU. I was out of surgery by 10:30am. At 11:10, the doctors came and told Rick and I that they needed desperately to do the Balloon Septostomy (sp) which is that cathetar with the balloon to open the whole in his heart. They immediately had rick sign the papers and performed it in the NICU - something they normally dont do. The proceedure went great and he's been sedated since then. We finally got to see him at 3:00pm. He's adorable and looks nothing like Landon or Brenden. He's got dark hair and a little scrunched up nose. I think he's got his mommy's finger feet and his daddys nose and shape of the head... Perfect - all the doctors have said we have a cute baby. Anyways, they tried to insert the PIC line but failed at it b/c they couldnt get a good blood return. They'll try again tomorrow. His oxegyn stats are up in the 80's which is good. Before the balloon proceedure they were only in the 60's and below. Rick and I plan to go back tomorrow to get to hold him but plan to be there more tonight. I might actually get to BF him tomorrow too!!!! So, long day for us and while they clean him up and try another IV line, we're going to rest. Pictures will come tomorrow....thanks for checking in and the thoughts and prayers - it's all helped.



The 14th
I guess I havent updated since the first day or so. He's doing great. They removed the vent on Wednesday and had him breating room air with oxygen as well. They also took out one of the tubes in his belly button and now the only one that is in there is used to draw blood so they dont have to keep poking the poor little guy. The also tried on Wednesday to insert a PICC line. This stands for Peripherally Inserted Central venous Catheter. Lamens terms, it's a IV line that they inserted in his arm and it goes into the vein in his arm and all the way into the main vein in his heart. This is used to draw blood, give him meds and all that other good stuff that will help him out. The purpose is to not have to stick him so many times. Befoer they did this, they offered to let us join a study involving PICC lines. The study uses Vein Viewer to see his veins in hopes to get the PICC line in the first time, not the 20th time. (Google search this and check it out, it was neat).We read the paperwork and discussed it with the nurses and doctors and since there was no harm being done to him and it could potentially help him, we decided to join the study. They would have to pull an envelope and see if they should use it or not. They actually got to use it and in his case, it didtn work. They gave up the fist night and finally got it inserted the next day using an ultrasound machine and the help of a cardiovascular anesthesiologist (i think) or the Neonatologists husband. They were having all kinds of trouble b/c they could get the line in but they couldnt get the blood to flow right so she called her husband who is a cardiovascular aneshtesiologist and he came and got it in. So now he has a PICC line, and the line in his belly button. Last night, he also had the feeding tube in until he decided to become a doctor and remove it himself. He also tried to remove his breating tubes that were at his nose but that didnt work out. Daddy got to hold him yesterday but his stats were showing that he needed to be placed back on the prostaglandon (keeps the small whole open - not the whole that they ballonned but the other) and until he was stable, mommy couldnt hold him. Yesterday, they did a CT scan on him and got a 3D image of his heart. Once they give me a copy and i'm at home and able to do it, I"ll be able to maybe place it online for you all to see. It's amazing! Now, they also did the CT scan on his eyes and it showed no calcium deposites which is good and for now means that there is no Retinoblastoma. This does not mean that we are in the clear however. this just means that he doesnt have it NOW. They'll continue to check him every week for a little bit. Moving on to today - they decidedt ot ake him off the the oxygen as well so now his tiny face is tube free and tape free and ADORABLE!!! The only thing he's hooked up to now is the PICC line (Prostaglandon and Antibiotic) and the belly button iv and the heart monitors. They said at first when he came in, he was the most unstable baby they had in there. Now he's the most stable. GO PEYTON! Also, he gets to try Breastmilk today - only a small little bit but hey what the heck. Before now he's been getting liguid fluids through the IV. Guess mommy needs to get to feeling better and get to work. On, one more thing - they're thinking - nothing permanent yet but....surgery will probably be scheduled for Monday pending that nothing outrageous happens with him or anyone else this weekend. Good news.



Anyways, other than that, we're doing pretty good here. I"ll get discharged on Friday and then after that, we'll probably "hotel stay" in our room until we get to go home with him. IF we cant do that, we'll stay at the Ronald McDOnald House. I"m still fighting all thats associated with a nice lovely C-section (why i raved about it before...i dont know) LOL. We're slowely getting better though, just getting around slow.

11-17
Small update. Peyton will go for surgery on Monday morning at 7. How hard will that be on everyone. They gave us a tour yesterday of what will happen - UGH - yeah deffinately cried. Anyways, we're getting "evicted" from the hospital and Rick and I will be staying at the Ronald McDonald House considering the sleep rooms here only have a twin sized bed. So...anyways, they gave Peyton expressed breast milk and he cant handle it right now so they have stopped his feeds until after the surgery. That's fine though cause it was only for getting him used to feeds. Other than that he'll get pictures taken this weekend with nothing attatched. So....that's about all!


OTHER THAN THAT check our carepage for more updates and you do have to sign up for a page.....it only takes a second.

Thanks everyone...

Amanda

 

Sounds like he is doing well. I will pray that all goes well on Monday morning. Hang in there!! In this house, the name Peyton means strong and stubborn (both physically and mentally), And I bet he will live up to our meaning of the name as well. :hug99:

 

Will be praying for you little guy on monday. I know you have tons of experience with hospitals and procedures, but I'm sure it's still really hard seeing your baby go through all this. :hug99:

 

:hug99: :hug99: :hug99: :hug99:

he is in our thoughts and prayers.

 

:hug99: I hope everything goes well!! Your family is in my thoughts!

 

Thank you everyone! DH and I really appreciate it!

Amanda

 

You are in my thoughts and prayers. Thank you for the update! :hug99:

 

Any updates on how Peyton did in his surgery yesterday??

 

Here is what her blog says:

QUOTE
Okay, after waiting all day for the computer, finally i can update on what is going on.

Here's how today went... so far.


7:40 - Peyton went to the O.R. When mommy and daddy told Peyton that we would see him later, he opened his eyes for us! What a great little trooper.

9:30 - Nurse came out and said that they had started surgery. They said that he had a little bit of trouble getting the IV line started - just like they had trouble getting the PICC line started.

10:25 the life nurse came out and said that things look GREAT. She said that watching them work was like an orchestra and he was the conductor.

11:40 - They came out and said they had the chest open and had started working with the "angel hair" veins which connect the major ones. After that, they were going to start the two arteries. He was also doing well on the bypass machine and his stats were great!

1:30 Told us that he was doing great. They were done with all the parts of the surgery and are looking with an echo probe from behind his heart to make sure that all parts are working well. They were done with the switch and they will probably leave his chest open until a later time this week to controll bleeding if ned be.

GREAT NEWS!!!!! I'll update more when i get a chance but we're sounding great! Thank you all for the thoughts and prayers! You are all amazing people!