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. :)

I've Stopped Counting...

I use to know exactly how many days we have spent in the hospital. I no longer count. The number is getting too depressing. We are still at Primary Children's and the end is not really in sight. Jackson has had so many setbacks that we've quit asking when we get to come home. We'll just be surprised one day I guess!

I can't believe it's September. One of my fears became a reality. Summer came and went without me every really acknowledging it. Or fully partaking in the events that make a summer a summer. Don't get me wrong... Jackson is worth every bit of these struggles, but it's still very hard.

Jackson went 10 whole days without eating before they were able to pull the Anderson tube out of his nose. I thought he would be cranky and hard to console but he did amazingly. He was so patient and so giving of his cute smiles and coos. But boy did he appreciate his first bottle last Saturday. He started by eating 1 ounce at a time and the plan to increase 1/2 an ounce every 12 hours. And to have him at full feeds in a couple of days and then head home. But that didn't happen. He started throwing up, occasionally. Which wasn't a big deal. Then he started throwing up every time, and lots of it. And he didn't want to eat.........and who really does when it just makes you throw up?
So it's been an up and down thing with his feeds. They'll increase it, he'll barf, they decrease it and he gets mad! Then to top it all off, Jax got another line infection. It's so frustrating to be battling the same thing over and over again. We hope to be home in a week or 2...but we can't promise anything.

In other news:

My 3 boys watching the TV. Like Father, Like Sons eh? Even Jax is enthralled with TV. Doesn't matter what is on, he will crane his neck to get a good view. You can't break his gaze once his eyes get ahold of the screen. And Carter has developed an obsession with ice. The hospital has ice/water machines and he wants a cup full of ice, no water, each and everytime we come to the hospital. Whatever keeps him happy.

We've been trying to plan fun activities for him to get him out of the hospital. We found a fun bike park in Park City that we go to and let him ride to his heart's content.

Carter has REALLY struggled these past few weeks. He stayed with Grandma the first few days and then came to SLC with us. I am convinced he is part monster, part 3 year old. I guess those are really the same thing when you get right down to it. Sleep has become quite the battle. And one we seem to find ourselves losing frequently. He's tired of being moved around but I think we've finally got it together. Last night found the 3 of us sharing a double bed. It was quite the night let me tell you.

Here I am sporting the water proof yellow gown. When this kid barfs, he can really barf. The yellow gown saves me from multiple clothing changes. This picture was taken courtesy of Carter. This is another thing to take his mind off being in the hospital. He loves using the camera and with a few pointers our heads are usually in the pictures. How did I ever grow up with a film camera that didn't have a delete button!

Once we get the line infection cleared and Jackson keeping all his food down we get to come home. He doesn't even have to be eating the full 3 1/2 ounces to come home. Just proving that he can keep down what he's taking and we can increase the feeds at home like we did before.

We're praying for no more puke and no more infections. Although this sweet baby can still manage to flash a darling smile after all the puking. That is not something I could do!