Jackson Update

Jax went 6 weeks without a central line and didn't gain more than a few grams. Even increasing his calories didn't put weight on the poor boy. So the decision was made to put a line back in and start back on TPN. I am actually okay with this decision. We gave it a great shot but simply put, his body (bowels specifically) are just not ready to absorb the calories he needs. Amazingly he didn't lose any weight but just couldn't put any on. So he is close, soooo close to being line free, just not quite yet. People have asked, "can't we just feed him more?" The answer is no. He already takes way more calories than a normal baby but if your body is not absorbing 100% than it doesn't matter if you eat butter tub after butter tub. You will not gain the weight you need. TPN goes through the veins, not digestive system so his bowels don't have to absorb it, he is basically forced to absorb.

Moving on.....Friday, April 20th found us back at Primary Children's. Neil had a business trip to Austin, TX so we dropped him at the airport and headed to the hospital for what we thought would be a quick in and out trip. Wrong.

Carter was very excited to be back at the hospital. Probably the only kid there who was excited to be there! We always have to stop in front of the pond and Carter empties my coin purse for me.

We had a few minutes to spare so we headed to Carter's favorite section of the hospital. The play area. Usually Jackson isn't with us when we come here but he had a great time as well.

Look at my big boy standing on his own playing the life size piano. 1 month until he turns 1. I can't believe it.

Carter probably played with every single toy in the room. He loves it here.

Then up to Radiology where the plan was to put another PICC line in Jax's right arm. It was already established that his left arm had no access left but we were hoping his right arm had one last accessible vein.

The appt started with the sweet nurse trying to place an IV in his right hand. She couldn't get it. Because of the million IV's he's had placed, he is not an easy poke. After 2 tries she called for help. A wonderful IV Therapist came and placed one on her first try.

New Rule: No nurses get to try their hand on Jackson's veins. From now on I will request IV Team. The nurses can place IV's on regular kids. Not my baby anymore.

You would think it would get easier as you have to hold your baby down as they dig around in his veins while he is screaming bloody murder. It doesn't. It might actually get a bit harder, remembering all the other times you've had to hold him down while his big eyes are pleading with you to stop and pick him up.

What a tough guy he is though. This is him after 2 failed IV placements and 1 successful placement. And also not having eaten for 7 hours at this point. I gave him his binky and his blanket and he rolled over and slept for an hour in the bed as we waited for the doctor.

All in all he went 17 hours without eating one single thing. He rarely cried. He required constant distractions to keep him mind off food but what a blessing that he was able to tolerate not eating for that long.

And bless Carter's little heart. He has been through so much himself as he is dragged from one appt to another. He has his moments of course but for the most part he is so patient and flexible. He loves playing the IPAD.

The PICC placement was unsuccessful so we were left with one option. A Broviac. Same concept as a PICC line but you use the main veins in their neck/shoulder area. The bad part of this is that he has to go to the operating room and be under general anesthesia. They make an incision in his little neck and tunnel the line down and bring it out just around the heart area.

The bandage on his neck is temporary until the incision heals. The tape over his chest is the sterile dressing we change once a week.

It actually looks worse than it is. He was a little sore at first but now it doesn't bother him at all. He was (finally) circumcised and that actually caused him more discomfort than the broviac. I felt horrible about that but hope he will thank me later. :)

So he's back on TPN 3 nights a week and we hope to bulk him up a bit and then try weaning him down again in a few months. Of course we're disappointed that we had to come back to this, but I'd rather he be healthy and fat. And happy!

A Boy and his Bike

Neil's dream has finally come true. Carter can ride a pedal bike all by himself! We've been waiting a long time for this. He could have done this last fall but Cautious Carter was too comfortable on his orange bike and didn't want to try his new bike.

This first video is back from April 2011. He got really really good on this bike with no pedals.

And this was tonight. He was getting a little silly and kept wanting to hit the brakes for laughs. He still needs a little help starting but Neil is already planning their first bike trip.

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.

February

Highlights of February:

Valentine's Day started with pink, heart shaped pancakes and pink milk. The pink milk caused a little freak out by Carter but once he figured it was the same stuff he asked for a refill.

Dinner consisted of stuffed RED peppers, Red Sugar-free Kool-aid, and red cornbread muffins.

Don't worry, Neil was close by for Jax. He's never left alone like that. Especially since he can now throw himself out of the bumbo when he chooses to. He's now been graduated to a real high chair.

Side note: Carter is very observant. Since we have to measure and make sure Jax gets X amount of calories per day, we talk about calories and ounces every day. Seeing the big pitcher of Kool-Aid on the counter Carter asked "How many calories are in that?" "How many calories are we going to drink tonight?" He also knows how many kilograms Jax weighs and frequently tells people that "my brother weighs 8.4 kilograms."

Having a child in the hospital frequently has really helped me to brush up on my metric system. We don't use pounds and ounces here, we do kilograms and grams. We don't use inches, we use centimeters. We don't use ounces very often, we use Cc's and mL. The metric system is really, kind of easier. I'm still no pro but definitely getting better. I can even do the conversions in my head.....not exactly but a close estimate.

But in case you're wondering, this boy is weighing in at about 18 1/2 pounds.

His doctors are very, very happy with his weight gain these days. So happy that they've decreased his TPN to 9 hours a night, only 6 days a week. And instead of going to 5 days a week this week, they are cranking down his Lipids calories to try and give his poor liver a rest. He's making great progress and we are all hoping it continues. The optimistic hope is to have him TPN/lipid free by summer time.

My happy boy. Not even knowing or caring that his plaid shirt is so "in" right now.

Big brother can hardly stand not getting the attention so he agreed to pose for a quick picture. Rare.

Now onto comparisons using this plaid shirt. Here is Jackson in the shirt at 9 months old, weighing 18 1/2 pounds.

Here is carter in the same shirt at 6 months old breaking the scale at 23 pounds. Barely squeezing into this shirt if I remember correctly. At 9 months, Carter was 25 1/2 pounds. I don't think they look much alike in these pictures.

Mornings at our house are pretty slow. The boys always have to watch their favorite show Mickey Mouse Clubhouse. Jackson is really loving life since learning to sit up on his own.

Mickey Mouse is their drug of choice. Not even noticing I was snapping away.

Jackson has learned to clap in the last few weeks and it is one of my favorite things about him. He knows he's cute when he does it and loves when people cheer for him.
I found Carter's old baseball hat and had to take another picture for a comparison. Jackson has a "larger than average head" but this hat is still too big for his head.
Here is Carter wearing the same hat at 7 months old.

We spent last Saturday enjoying the pool at the gym and letting Carter practice his new swimming skills. It's amazing what 2 sets of lessons can do for a kid. He's now comfortable in the water to not be in Neil's arm the entire time.

Jax and I enjoyed watching from the sidelines. Can't wait til Jax gets his PICC line out so he can join us in the pool.

Sunday brought sunny weather and so we enjoyed playing outside together.
Carter has a mean swing with a wiffle bat.
Jax sat on the blanket and was thrilled when Kevin decided to join him.

Then we all played in the sandbox. Jackson really enjoyed standing up like a big boy and digging in the sand. He almost gave Carter a heart attack by "messing up" his sand castle.

He loved the feel of the sand on his hands. I am obsessed with these fat baby hands. I squeeze them all day long.
Here is a game Carter made up called "Finish Line." He made the name up himself and it makes no sense. You grab these styrafoam blocks and hit them until they break. A true boy game.
This boy loves his daddy and they spend lots of time playing boy games. I use to be Carter's favorite but for now I will have to be satisfied with being Jax's favorite. He thinks I am great and I feel the same way about him!

American Idol Tryouts

Want to see something funny? Watch this......but don't judge. He has no idea what he's singing. He just knows it's my favorite song....and now his. How can you not like this song? It's got a great beat.

Brothers

"Sometimes being a brother is even better than being a superhero." Marc Brown

My 2 boys. My first baby and my second baby. This might be my favorite picture of them together. Carter was so excited to get a digger shirt from Grandma. So happy that he forgot he hates pictures and posed for several.
Kisses. Jackson gets his fair share of kisses from his older brother. I have to set a limit sometimes and have banned kisses on Jackson's eyes. They love each other. They adore each other. And they feed off each other. If Carter is laughing, Jackson will laugh. If Jackson is laughing Carter will laugh. Jackson will track Carter around the room and he saves his best smiles and "talking" for his brother.

They even have their squabbles already. Here Carter is complaining to me because Jackson is smacking his face. Or trying to.

Carter is a great brother to Jackson and takes his role as older brother very seriously. We have had many discussions about Carter's little toys and how we have to keep them away from Brother because brother could choke on them. I told him once that if the object was smaller than his elbow than Jackson could choke on it. He has certain toys that are not allowed out of his room because they are a choking hazard and he has done great at remembering that. He will sometimes even pick up a toy and measure it again his elbow and ask "Is this small than my elbow mom?" And no, that's not a typo.

If Jax is crying or fussing Carter will come to him and get in his face and tell him "it's ok brother, I'm here. Shh. Mom is getting your bottle." Or "It's ok Buddy, I'm here."

He was Jackson's formula advocate. When we were trying to get him to drink the nasty formula Carter would tell me each and every time "Mom, Jax doesn't like that formula." And even now, each time I prepare a bottle he makes sure I have prepared the good stuff vs. the bad stuff.

I came over to Jackson one morning and found him with this brown stuff smeared all over his head. My first reaction was "How in the world did he get poop all over his head?" He's known for his blow-outs but this was a new low. Come to find out it was just chocolate(thank heavens). Carter had just finished eating his chocolate chip pancakes and decided Jackson needed some kisses.........

And some how chocolate ended up all over Jackson's head and shoulder.

Both boys love to read. And read to themselves. Jackson loves to read while I get him dressed and ready each morning. And during diaper changes.

Both of my boys are addicted to technology. We already know of their love for TV but now it has spread. They both love the ipad and grandma's Iphone.

I love this picture and watching Jax with this phone. It was as if he'd been using an iphone for years. He used perfect form with his little thumbs and was moving stuff around on the screen.

Words with Friends anyone??

And now for the bad news...............Brothers share toys, brothers share ipads and unfortunately in our house: Brothers share allergies.

We knew Jackson had an increased risk of having allergies since Carter had them but I hoped his food issues would stop with his condition. So such luck.

Allergist's Office. Carter getting nervous for his skin test. We brought the ipad and oreos for Carter to use during his test but he just wanted to snuggle with daddy.

My 2 topless boys. Ready for their back scratches.
Jackson went first. And bless his heart he did not cry at all! This must have been a piece of cake compared to all his other trauma. They had done a blood test weeks before and the results of that guided the panel they tested him to.
I had an important job this day. Holding my 8 month old so his back didn't touch anything, he didn't lay down or scratch his back.

Carter's back. Bless his little heart as well because he didn't cry at all. He was so brave and tough. He knew exactly what was going to happen and that it would hurt a little bit but he was so great.

If you can see all the red, raised hives on their backs you can see that our news was not great.

Jackson is severely allergic to milk and eggs. And honestly I had made peace with that. We have been dealing with that for the last 2 years and I've become a pro at cooking without them. The bad news came in the form of wheat and oats. Jackson slightly reacted to these 2 things as well. They were borderline but for now we are avoiding those in his diet as well. The allergist is hoping that they aren't true allergies and that his body was just overwhelmed with the other allergies so it was attacking random things. Jackson has actually had several things with wheat and oats in them in his short life and has never reacted. We will have him tested again in 3 months to see if the wheat and oat are gone. Cross your fingers. This boy already has such a limited menu that I pray he won't have more.

Carter had some weird results as well. He tested negative to peanuts his very first test and has many peanut butter sandwiches in his life. This test showed that now he is very mildly allergic to peanuts. What?!?! It was so borderline that the Dr. said if he's been eating peanuts for so long without problems than it was probably safe to continue on peanuts.

In July he had an anaphylactic reaction to cashews. Tree nuts have the same proteins so most likely if you are allergic to one kind, you will be allergic to them all. Peanuts are not a tree nut. They are a legume. Who knew? We finally did a tree nut panel and it revealed that he is highly allergic to cashews and almonds. And coconuts. I never thought about coconuts being a tree nut but they are. Another funny thing is that carter use to drink almond milk a lot. Whenever almond milk was on sale I'd buy that instead of soy milk. But apparently you can develop allergies the more your body is exposed to them. The bad thing about coconuts is that we use to give him coconut ice cream. It's delicious. In fact, he had some 2 days before we went. So that is another iffy one. But for now we will avoid it as well.

With all this bad news we did get some semi-good news. Carter's egg allergy is almost gone! He goes back in 6 months and we are hoping at that time he will be ready for an oral challenge. An oral challenge where he will eat something with egg in it, under close supervision of the dr. and see how he reacts. Or doesn't react. And his milk allergy is slowly fading as well. Not ready for an oral challenge on it but it is decreasing.

80% of children out grown milk and egg allergies. Only 10% outgrow tree nut allergies. I told the allergist that we don't seem to be lucky people. She told us the Chinese thought that "You're only lucky if you think you are." So we are adopting that motto and moving forward. I thought that visit might reduce me to tears and a small pity party but it really didn't. Not a pity party for me, but for my babies. I guess when you've been dealt the card of short gut then allergies seem like a piece of cake. I'm very anxious to see the results of their next tests.

But for now we are checking food labels, rechecking food labels, and trying to explain to a 3 yr old why he can't have the coconut ice cream grandma bought for him, that he just had last week. Wish us luck!