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Sunday, September 18, 2011

Happy 4 Months Jax

My baby is 4 months old! Where has the time gone? I tried really hard to focus on the good instead of remembering that we're STILL in the hospital. Because rumor has it that we get to come home this week!!

Jackson and I took a walk around the hospital today. He is so bright eyed and curious about everything. He is only on his TPN for 12 hours a day which leaves lots of time where he is connected to NOTHING. You really take for granted walking around with your baby. We haven't been able to do that really until now. His whole short life he's been connected to 2-3 pumps at a time. So walking the hallways and even going outside was such a wonderful blessing.

He's finally feeling better and keeping his food down. Which makes him and us both very happy. And in return he has morphed back into the baby who coos and smiles a lot. At anyone.
If you look at the right side of his stomach you can see his scar. Which we will always look at and remember how that incision has brought us so many things. Tears, worry, stress, faith, hope, prayers. But mostly miracles. Our miracle baby.

Carter is obsessed with the play area they have downstairs and today we took Jax down to check it out. I may or may not have shed a few tears as we got to go somewhere together, and not hooked up to anything. And I think about getting home and returning to normal life and I can hardly wait.

How will the ladies ever resist this face? Or that dimple? Or those big blue eyes? And creamy White White skin?! Can you see the faintest little roll in his right thigh? The weight is finally starting to creep back on after surgery. He is a freakishly long baby weighing in at about 12 3/4 pounds!

When we come home, we are coming home with Jackson still requiring TPN. But the hope and expectation is that in a few weeks/months he will be off of it completely. Which is way faster than the 1-2 years they thought at first. They have great hopes that he can absorb the nutrients he needs on his own and ditch the PICC line completely. There was talk of weaning him off before we left the hospital but we do not want to stay a day longer than necessary. And since we already know how to do all that at home, our GI doctor has agreed to work closely with us from home and to do it there. It may take a little bit longer at home but it will be worth it to just be home.

Right now he is at about 2/3 of a full feeding by mouth. 2 1/2 ounces per feed. Once he gets to 100% by mouth the plan is to turn TPN off and see what his little body will do. The hope is that he will continue to gain weight without it. He is only on TPN right now 12 hours a day. He came home initially on 20 hours TPN so the progress has been great. And as he eats more by mouth, we decrease the hours even more. We've seen so many miracles occur with Jackson and we're hoping for one more.

Neil and I were talking about what we'd like to do, once we're home that we couldn't do before because of the ostomy bags and TPN. Neil wants to watch TV downstairs, all together. He said he doesn't care if it's Mickey Mouse! Jax rarely made it to our basement because it's not very easy taking 3 pumps and a pole down the stairs. I chose going to the grocery store! Jackson has NEVER been to the grocery store with me before. Small things that we are both so excited about. We are ready to get home and hopefully stay home and return to normal life. If there really is such a thing as normal!! I hope to see you all at Walmart or Lees. We'll probably go there every day....just because we can. :)




10 comments:

Jaron and Mandy said...

He is a beautiful Miracle! Can't wait for you to bring him home. I know that handsome man will do wonderful things in his life. what a strong little dude. You are always in our thoughts and prayers, and we are here if you or carter need a playdate or anything.

Lacey said...

I will be watching for you at Walmart! ;) It's amazing how such a huge trial can make you appreciate the little things. Happy 4 months, Jax! He really is such and handsome little man. :)

Becky said...

He is so big!!!! I can't believe it! And you are right, he is a good looking kid, I'm locking the girls up already :) I am so excited you get to come home soon. We miss having you and Carter (and now Jax!) around. If you need anything at all just give us a call.

corrychronicles said...

Amanda, I think he has grown even in the week since we last saw him...he is for sure a cutie! Glad you might come home this week, my fingers are crossed and I will be anxiously waiting for you :-) cuz there is a lot I would like to do with you and your family too.

Ann said...

He is a handsome guy! SO glad for all the good news! Hurry home, we miss you guys!

Ben and Carrie said...

Oh my word, could those pics of him on the chair be any cuter? he is a doll. How can you stand it??

Jax has so much to do and so much to see to make up for all his time spent in the hospital. And you too! Hopefully you make it home while the weather is till decent so you can all spend some time outside together. That is one thing he has surely never experienced much is nature.

Here's to hoping for a quick departure from the hospital. Can't wait for you to be home and have NOTHING to do and no where to go! (Except Walmart!)

Megan said...

such great news!!!

i'll be adding my prayers for a speedy recovery and full feedings for little Jax!

CharityB said...

So glad to hear all of this! Tristan loves looking at all the pics on you blog and all 3 kids remember to pray for him everyday "that Jackson can come home from the hospital soon." We hope all continues to go well and that we can see you soon. :)

The Blakeslee Family said...

I just can't believe how much he's grown and changed in the 3 weeks since we've seen him. The picture of him sitting up smiling is the best one yet.
I am almost as excited as you to have you all back home in Logan. Can I take Jackson for a stroller ride? I'm praying for good weather for another week at least so we can go outside.

Julie said...

He is so stinkin' cute! I'm glad you guys are home now. He's a lucky little guy to be doing so well so soon.