Jax

So much to catch up on. So little time. I'll have to do more than one post to get everything. We arrived home September 26th. After 5 LOOOONG weeks in the hospital. Boy were we glad to be home and sleep in our own beds. And most importantly, have our sweet little Jackson home with us.

I've thrown some random pics from the hospital in the post, just because.

Jax experienced the BUMBO chair for the first time in the hospital. He quite enjoyed it and it was a nice change from laying in his bed the whole day. He has great head control for being in the hospital for so long and not getting a lot of tummy time as a newborn.

Neil's sister Linsey is a Dr. at the U and also does some work at Primarys. We were so lucky to have her. Seriously, I don't know how we could have survived our stay at the hospital without her. She lives about 3 miles from the hospital and let the 3 of us crash at her house for 5 weeks. Without any complaint. And she even took time out of her busy busy schedule to stop by and see Jax almost every day. Carter was in heaven living with Aunt Linsey and she spoiled him rotten. She was so patient with him and they went on so many fun adventures to give Neil and I a chance to be at the hospital without carter.

During the 5 weeks Jax was in the hospital I only left once. It was a Saturday and we needed to come back to Logan to do some things and gather some things. When I left Jax was happy and doing great. Of course once we arrived back in Logan I found out he was throwing up again and not allowed to eat for 24 hours. I was so sad to be away from him and worried constantly about him. But Aunt Linsey came to the rescue. She spent most of that night sitting in the rocking chair holding a cranky baby who desperately wanted to eat. She said she sat for about 6 hours straight just holding him while he slept. Then she came back bright and early the next morning until I could get there. We really owe Linsey a lot for all she did for us and our boys.

This picture is from August when Jax really started smiling. He is still a smiley guy. He doesn't laugh yet but he is so close......when he really smiles his whole body almost shakes and he makes a soft grunting noise because he is trying so hard to laugh.

Loves his big brother and is so patient with a loud and overbearing 3 year old always in his face!

The first week we got home was a little rough. I was hoping since he didnt' have his ostomies anymore, life would be a breeze. I was wrong. The day after we got home he got diarrhea and that freaked me out. He doesn't have any weight to lose and I was worried about dehydration and him losing weight. I eventually pinpointed what was causing the diarrhea. Right before we left the hospital they started adding stuff to the breast milk he drinks. Microlipids and pectin. Lipids are just fats that were suppose to help him gain weight faster. And the pectin was just regular old canning pectin added to help thicken his stool and slow down the process for him. But once I took those out of his diet, the diarrhea went away almost immediately. And things got so much better. His poor little bum paid a dear price though. He had a wicked diaper rash from the constant diarrhea that took me until today to clear up. Now that the diarrhea is gone, he is back to gaining weight and I am breathing a bit easier now.

This was kind of a sweet moment for me.....Because of everything Jackson has had he had NEVER been in running water before. He was always sponged bathed. And because he still has that PICC in his arm, he cannot be submerged in water. He can't get the picc wet. So I bathed him in the sink the very first day we got home. He loves it. I can't wait until the day his PICC is gone and he can splash in the real tub. I have a feeling he will love every second of it.

He has really found his hands in the last few days and has them in his mouth frequently. He isn't so much sucking on them as he is chewing on them. I thought he may be teething at first but haven't seen any teeth pop in. Either way, it's causing a lot of drooling!

Don't you wish your bum was this cute?!? He is still very very skinny and super long. His height is in the 70% and his weight only in the 3rd%. We just started adding some alimentum formula to his breast milk to try and pack on the pounds. Regular formula or breast milk is 20 calories per ounce. Jackson's milk is bulked up to 24 calories per ounce. I am hoping and praying this will do the trick to put some meat on his bones. He is still on TPN. That is why he needs the PICC line. We brought him home on only 3 nights a week of TPN but I asked the Dr. to increase it to every night while he had the diarrhea to give him extra calories. The plan is to keep him on TPN nightly until he shows us that his weight gain is steady and he doesn't need it. I was really hoping he wouldn't need it after surgery but he does. The Dr. keeps telling me that a short gut patient, at only 4 months old, getting only 12 hours a day of TPN is remarkable. So I try and remember that. The research shows that most short gut patient's guts(did you get all that?!) don't start to figure stuff out totally until about 6 months old. So he still in right on track. And just because he needs TPN now, doesn't mean he will always need it. I pray very specifically each day for his gut to figure out how to absorb all he needs, with what little he has left. It can be done and I'm praying for it!

He still loves TV. Which is good and bad....I'll explain more about that later.

My tiny boy. This tiny boy has 2 temperaments. Happy and smiling or Screaming. There is rarely an in between. When he is mad he can scream like it's no body's business.

But when he's happy, he's quite the charmer. When he flashes that dimple I pretty much give him whatever he wants!

We are really trying to make up for lost time now that he is home and doing so well. He didn't get a lot of tummy time before due to all the hardware on his stomach and all the time in the hospital. When we left Primary Children's they referred Jackson to the "Up to 3" state program. Simply for the fact that he's spent most of his time in the hospital. His gut problems should cause no developmental delays but being in a hospital can. So the therapists are coming out and evaluation this week. He has great head control, can roll from tummy to back(rare, but he can) but the biggest problem she noticed was about toys. I noticed before that he has no real interest in toys. He'd rather look around and can entertain himself by just looking at things. Which is a common problem after being hospitalized for so long. He constantly had new surroundings and people around him that he was entertained by them. So we are going to work on him discovering toys and wanting to reach out and grab them. And once he grabs them, putting them in his mouth. Even in the last 2 days as I've worked a little with him, he's starting to recognize toys and get excited at the sight of them. Now we just need him to want to pick them up and play with them. He has the muscle tone and capability to do that, he just doesn't know he should. The therapist thinks he should catch on really quickly and won't need help very long.

And here is my sweet boy in all his glory. His 3 scars. Which are healing so nicely. I can barely remember 6 weeks ago and all the stuff he had attached to his abdomen. Modern medicine is truly amazing.

Jax is still not up to full feeds yet but I am hoping by the end of the month to have him to his goal amount. Which is about 120 mL per feeding. Right now he is at about 105 mL per feeding. So we're not too far off. I am increasing his amount very slowly as to not overwhelm his gut. If we push to fast, it can really set him back and we don't want that. I feel a lot of pressure being in charge of decisions like this. When to increase, when to stay where we're at etc...

All in all he's doing really well and we're loving having him home and doing normal things together. He is such a sweet little boy and we're very lucky to have him in our home and family. Because he still has the PICC line in his arm it is VERY likely he will get another infection and have to be hospitalized again. I don't mean to be pessimistic but the odds aren't in our favor. But today we hit 16 days straight of being home together. Our previous record was 10 days. So we're hoping no infections and many many more days at home together.