The Day We've Been Dreaming About....

Do you believe in coincidences? I'm not sure I do. Last Wednesday, March 7th my sweet baby woke up with a fever. And in the land of PICC lines(central lines) that means an immediate trip to the ER. I was very bummed since it had been 4.2 months since he'd had an infection. I was 99.3% sure it was another infection and so I tried to mentally prep myself for a week stay in the hospital. It's a long story but his PICC line ended up getting clogged so it had to be removed and since it was coming out they decided to keep it out!

DID YOU READ THAT?? MY BABY IS FREE!!!

The GI doctor who admitted us was amazed at the just the sight of Jackson. (He is the Dr. that discharged him back in Sept. but not the dr. we see in clinic.) At how healthy and FAT he looked. He did a thorough check of his charts and history and declared this was "THE DAY." The day to pull out his PICC and go cold turkey. No TPN, No lipids. See how he did with just eating by mouth like a normal baby. So they did it. Pulled his line. It was so exciting yet a little scary all at the same time. TPN has saved my baby's life and he's never been without it in his life. But we were on board. He had been weaning down on it nicely and the thought was to have him off it this summer but the sooner the better. (TPN/lipids are VERY hard on the liver and a lot of times send people into liver failure. Not to mention the risk of infections that can and are deadly. We know all about those.)

Jax ended up NOT having an infection but rather a pesky UTI(urinary tract infection). While the UTI made him feel not so great I feel like it was a blessing in disguise to get him off TPN. To get his PICC line out. The bad part about a UTI is that they are rare in babies and even more rare in males. He had to go back next week to make sure he doesn't have reflux of the kidneys. If he does, that could require surgery. We are hoping his UTI was just a random, one time thing.

All that being said, we are on a trial run. They are giving him about 4 weeks to "prove himself." We go off his weight and an occasional blood test to see if his body is ready. We are hoping and praying he can maintain his weight and gain weight without it. But the reality is that his body might not be ready yet and he may have to go back on TPN at some point. Its been about 10 days and he hasn't lost weight yet so we are crossing our fingers.

It has been glorious having a tube/line free baby. It didn't seem real for days. And now it seems like a dream(nightmare?) that he ever was connected to pumps. It will be a disappointment for sure IF he has to go back on, but not the end of the world. Every time we pray Carter whispers loudly "Don't forget to pray for Jax and no TPN." (He is on a kick of refusing to pray, but wants to tell everyone else what to pray for.) Believe me, we don't forget.

Back to that day in history......

Sleepy baby in the ER waiting for the Dr.s to figure out the game plan. (Logan hospital)

Exhausted baby. Fell asleep drinking his bottle. He always drinks a bottle like this. Bottle in one hand, his binky in the other. And he's started sleeping with one, or both hands over his eyes.

After 8 hours in the Logan ER we were transferred to Primarys. Seriously, who rocks hospital gowns like Jackson? No one. I wanted to stick a pair in my bag and take them home with me. But I didn't. Once Jax got some Tylenol in him he was the HAPPIEST baby in the world. He wasn't acting sick which made us hope it wasn't an infection from the PICC.

We were lucky enough to have some of the same wonderful nurses he had during the 13 weeks he's spent there previously. Jackson turned on his full charm from minute one and had the nurses eating out of his little hand. He knows how to charm the ladies. That toothless grin, with dimples........who could resist.

Unfortunately the nurses couldn't. I left the first day to run downstairs to get lunch. I left him in his crib, almost asleep. I came back an hour later and he was out in the hall playing/flirting with everyone. He'd needed a diaper change and instead of letting him go back to sleep, the played with him. I tried not to be mad:)

Once the PICC was out, and before they knew what was wrong, he had to have an IV in his left hand. It did not slow him down in the least. He could still hold his own bottle and still clapped, splint and all.

Once the UTI was confirmed we discharged. We didn't want him there a second longer to catch some other weird bug. Not to mention a shared room we were forced into............don't even get me started on shared rooms......

We ended up staying the rest of the weekend with Aunt Linsey in SLC. The first thing Jax did was take his very FIRST BATH!!! I had been waiting a very very long time for this day.
(I love this picture of him and his tongue) He is a big fan of the tub. I worried that he would hate it since he'd never been in water but he actually did really well and enjoyed splashing around. He did not like laying down in it though. It's so wonderful to throw him in a bath when he's dirty. Sponge baths get old after awhile.

The only negative thing about not having a PICC line is that we lose our Home Health Nurse Missy. We have been soooo lucky with our nurse and love her to pieces. She took over Jax's care since day 3 and we haven't had anyone else. She is a NICU nurse at the Logan Hospital and Jax was her only private patient. She spoiled him rotten and he loves her so much in return. I was secretly afraid that his first word would be "Missy!"

She has promised to stop by occasionally and visit. Just today she asked if she could stop by and babysit and made me run errands without the boys. Yes please! I consider her a good friend. She was so good to us and our baby that we could never repay her. She brought us several meals when he was in and out of the hospital and multiple plates of her homemade cookies. She never left out Carter and would always bring him his favorite treats and games as well. She stopped by after we got home from the hospital to discharge Jax from the services and I don't know who was more sad. Me or her. I know she will miss Jackson a lot. She told me today that she cried all the way home! Our insurance company paid for us to have 6 hours a week of respite care and she would always babysit him during that time. Every single week. She always offered to babysit for longer and for free if we needed it because she liked him so much. Carter still asks about Missy daily....

Also-the day after getting home we took Jackson straight to the swimming pool. We figure that if he does have to get his line back in we need to make these few weeks really count.....

My 2 best boys. At first Jax didn't love being splashed by other kids but got use to it quickly and had a great time.

Daddy's little buddy.

Now on to random stuff.........

Look who is finally growing some hair. By the time he's 11 he should have a full head of it. But for now the little mow hawk is adorable!

Earlier in March we took Jax back to the allergist to check a couple more foods. They all came back negative, thank heavens.

Jackson loves his monkey with the binkie attached. He really only has it at night in his crib but I do bring it to places like dr.s and church and anywhere else I deem necessary.

Carter wanted to play in the snow one afternoon so I dug out this "outfit" from when Carter was a baby. It is probably the ugliest thing I have ever seen but it kept Jax nice and warm.

Jackson is not crawling yet. Of course he's not....he's just like his brother. He really hates to be on his stomach and will roll right off of it. But if Carter leaves Chutes and ladders out in his sight, he will gladly stay on his stomach all day! He is just starting to get a bit frustrated with not being able to go places so I am hoping it will motivate him to crawl sometime soon.

Lest you forget I have 2 sons.....Jackson really likes Carter and wants to be where he is and do what he is doing. And he wants his fair share of turns with the Ipad. Carter was not happy about this day on the couch.....

But Carter does love his little brother.
On this day he wanted to snuggle with Jackson in his bed before naptime. He is learning to be a bit gentler around Jackson but luckily Jackson is use to his roughness and rarely minds being squeezed and bumped around.

Because of some antibiotics Jax was on he developed Thrush in his mouth. The Dr. prescribed a medicine that you paint on their cheeks. He warned me that it will stain clothes but I didn't know his mouth would be fluorescent purple for days! Every time he drooled, purple would run down his cheeks. I couldn't get the purple off his lips and tongue no matter what I tried.

Neil recently bought a dirt bike that is as old as he is. He has tried to convince Carter to take a spin around the neighborhood on it with him. Cautious Carter refused. Until we bribed him with a bowl of Sorbet. He cannot resist that......he was so nervous as he first climbed on but once they got going he loved every minute of it and was squealing with delight. Now he begs Neil to take him for rides every day.

My view from the back of the stroller. Heading to the park.
Jackson's first trip down the slide. He enjoy it until Carter rolled over on him at the bottom. He wasn't hurt, just scared and got over it quickly.

Hoping for more warm weather quickly so we can get back to the park and riding our bikes.