Doing so well!

Caleb is doing so well today. They have slowed his weaning process down allot and he is doing very well. He is so alert and attentive. He is feeling extremely social. He would rather talk to his nurses than play with toys. Even so when he is playing you can see the concentration in his face as he tries to make his body do what he wants it to. We played the game where I tie the balloon to his leg so he can kick it and watch it bounce. He figured out quickly that it was connected to his right leg and focused on trying to make just the right leg kick... Here is a video of it:

Merry Christmas!

Dear Family and Friends,

Its me CALEB! I just wanted to let you know that I am doing FANTASTIC! I had a very good day today with my mommy and daddy, I got to open presents and I got to see Santa. It was a very happy day. I think I am done being cranky from my surgery last Friday and Dr. Linden said today I am doing great. I started my g-tube feeding yesterday and I am doing great, I am already on 18 cc's an hour! At 8pm tonight I get to go to 22ccs and once I am on 38ccs I get to be off the tpn and lipids! I am also almost finished with my morphine and versed. Do you know what that means???? No more central line... I cannot wait to have a real tubby!

I weigh 22lbs now and 27 inches long! Mommy was scared I was getting to big so she asked Dr. Belford (shes a neonatologist) and she said I was PERFECT, not to big not to small. I am in the 90th percentile so there are kids even bigger than me my age! Mommy was very relieved!

I hope I get to come home soon. Mommy and daddy said that as long as we all stay strong and and continue to pray everything will work out the way it should.

Thank you everyone for praying for me and my friends Gracen and Donovan! Thank you grandma Liz for coming to visit me and thank you grandma Retta for watching over me from heaven, always.

I love you

Caleb

mommy will post more pictures later

Tough Day

Well today they stopped Caleb paralytic today and he started fighting the breathing tube. It was quite an adventure. They increased his other meds to settle him down and he is calm and good now.

Well the snow finally made it to Boston but we were prepared so it's not so bad.

Fundo complete... Looking good.

The FUNDO is complete. He did extremely well, so well the surgeon described it as "boring". He is sedated and will remain so for two days. Dr. Lenden said this is a very empirical time frame so he will be taken off the paralytic on Sunday.

Fundo Update

So for so good. They did the dilation no problem. The center line replacement got a little more complicated... They are putting in a PIC but doing it through an incision near his knee. The surgeon stated that this is actually better and less likely to get infected so it's really a good thing. Still waiting to find out if they are doing to FUNDO....

Caleb's Fundo

Well Today is Caleb's last surgery for reflux. He is strong and healthy so it should go very well. It was still a bit hard to say bye to him on the way to the O.R. Well we will post more when they update us.

-Joel, Ernestine and Caleb

Next Steps

All is going well with mister man. They started his g tube feedings today. He gets 2 cc's an hour and has tolerated that well... He did have one episode of spitting up but he took it like a champ and acted like nothing was wrong.

The great news is that Caleb will be going to the O R on Friday to have his nissen and a dilation. He should be fine on Christmas and he should be able to start working towards full feeds. He will also get to start solids as soon as the doctors okay it. The feeding team seems to think we will do okay with bottles and the feeds because he has NO oral aversion, he loves exploring with his mouth and eats up his grade chapstick.

Everything seems to finally be progressing so fingers crossed that it continues to go smoothly.

Gracen had surgery today and will go back into the O R later this week. Prayers that everything does well with him. He is such a sweet sweet boys and after being in the hospital for 10 months I pray he gets to go home with his mom, dad, and sister soon.Donovan goes in for his nissen and a dilation tomorrow morning, please also send prayer up for him...

It is amazing how all three of these boys have been through so much in their short lives yet they are still smiling and still happy!

Thank you once again for all the love and support especially to you Liz!

Love,

Ernestine

Big Day!

Caleb continues to improve and is doing wonderfully! He just spent an hour planing with a toy the child life specialist brought up for him...

The big news of the night is that he went down for his esophagram today and they found NO LEAKS! His leak has completely resolved itself so we can continue on our journey! His feeds will hopefully start tomorrow and he will get his first dilation next week... SO needless to say we are so so so very happy. They were able to remove his chest tube so we finally got some good snuggles in...

The picture was taken a couple of days ago but it was so cute I had to share. More later, I have to get some sleep!

Ernestine, joel, and Caleb

Caleb is AWESOME

Little man is doing so well! He was all smiles today. I got to give him a bath by myself today through the nurse was hovering close by. He loved it, he smiled and talked to me. We then spent two hours cuddling. So we have a big day on Friday. He has another swallow study on Friday, they think the leak has closed so I pray they are right but as always we leave it in the hands of God.

So I here is picture of Caleb and mommy after is "tubby" as they say in New England. Caleb sends his love to everyone!

Ernestine and Caleb

Sunday

Sunday was another good day. He seems to be responding better to the 5% reduction in morphine than he was to the 10%. We got our first family picture in awhile.

He is also having fun with his Whoozit that Karen strung up for him. He is really trying to learn to use his hands!

His health is good and he is strong and happy. They haven't done any tests so no new updates on healing progress. His labs are all coming back good so all his organs are functioning well and his vitals look good. They have had him on O2 cannula as it dips a little when he sleeps deeply.

Love,
Caleb, Joel and Ernestine.

I almost forgot...

Joel:
I forgot to mention that he remembered how to blow raspberries like Dione taught him.

Dad is Finally Back and gets a surprise!

Joel:
I finally made it in Wednesday night/Thursday morning. The winds delayed my flight an hour or so. I get to Caleb's bedside and got a surprise:

Thursday:: Caleb is extubated! No more breathing tube and he's awake! He's sooo cute in his fresh outfit:


Friday:: He is having a rough day. He keeps crying and we can not figure out what is upsetting him. :( He has been fussing from 2ish and finally just drifted off at 7:20pm. His pneumonia seems to be dead and just clearing the goop out now. They did a swallow study today and his leak is a pinhole with just a whisp of dye leaking and no stricture, meaning the scar didn't close the esophagus. I miss his happy day yesterday.