6 months

6 months. Half a year. Sometimes it feels like an eternity and other times it seems like a blink of the eye. 6 months ago I had no idea if my little man would still be here. What his life would be like. I'm so glad he's here and in our family. I wouldn't trade him for the world. I love his guts. Literally and figuratively. I tell him that every night.

Because allergies run in our family(dang it), long before baby #2 entered this world, the allergist recommended we feed "it" nothing but breast milk until 6 months of age. This can lessen the likelihood of developing allergies. I believe her and I followed her advice. Except I cheated by about 2 weeks. I was dying to feed Jax some rice cereal. Not so much for his sake, but more for mine. Maybe to feel "normal?" Plus I know how much he loves to eat and how much/all of his life will revolve around food.

The rice cereal was well received. He didn't quite know how to keep it all in but he enjoyed the little bit he was able to swallow.

With his condition (I'll just refer to it as SG instead of typing out short gut each time) there is no telling which foods he'll be able to tolerate and won't tolerate. There are some that most SG patients don't do well with but only trial and error will show us. I have to proceed with solids in the same fashion as I did with Carter. One at a time, and only that food for 3-5 days. To make sure he will tolerate it. Not going into anaphylaxis shock like Carter, but diarrhea. So far so good with the rice cereal. And hoping that solid foods will slow the little guy down a bit. It's sad when you hope your baby might get constipated!

The tentative plan with solid foods is this: NO fruits. None. Those keep healthy movement...we don't need that. So for now, no fruits. Hopefully some day he can try them and handle them in small amounts. He can try some veggies. But not any that can cause gas (broccoli/ onions) and staying away from the higher calorie veggies. Veggies still have natural sugars and sugar is hard for SG people. So some veggies but not all. We've been told that the best thing to try next is Meat! Pureed, stinky baby meat. Proteins are good for his condition and less likely to cause mayhem inside! And unlike most babies, the dietitian said to add table salt to the meat if he doesn't like it. He doesn't absorb as much sodium as most people so some added salt is fine, even recommended. So this whole food thing will be interesting. Kind of intimidating to be honest.

I was never able to feed Carter normally either. We could never sneak him bites off our plates because of his allergies and now we can't with Jax either. I know it doesn't really matter, but it's something I feel bad about missing. Sneaking him a bite of my ice cream and cake or something.

I allow myself to feel bad only for a bit. And then I am humbled by this picture:

Bottle on the right: 5 mL of milk. That's 1 tiny teaspoon. When Jax was finally able to start eating by mouth, at about 10 days old, this was all he was allowed to eat, every 3 hours. Nothing more. It was almost a joke to put this tiny amount through a bottle nipple. One day he threw up and the Dr. took him down to 2 mL. Do you know how hard it is to measure that tiny of an amount? But he would take those 5 mL like a champ and burp like he'd finished a real bottle. Never been prouder!

The bottle on the left is where he is now. Full feeds. Full calories. 5 1/2 ounces every 3 hours. He isn't absorbing the full amount of calories but our hopes and prayers are that he will, and soon. He has impressed all his Dr.s and surgeons by eating full feeds by mouth. Some SG people never eat by mouth. Some are fed entirely by TPN(nutrition through veins) and others by a tube directly into their stomach. Jax is still on TPN to supplement what he isn't absorbing. But even that progress has amazed some. He started on 24 hours of TPN. 100% of his nutrition was being pumped into his veins, missing the digestive system. When we brought him home the first time he was on 21 hours. Today: 12 hours. And most likely he will stay here for awhile. His surgeon predicted 18-24 months on TPN. We're hoping for less but preparing for the long haul. Everytime we talk with someone new they are amazed that he is on as little TPN as he is. He's our miracle baby. Still a long road but we're willing.

To get Jax more interested in toys and rolling around we've been letting him experiment with different foods that will provide an extra "uumph" to his taste buds. First the carrot. Not impressed. (he's not sporting an off the shoulder outfit. We just leave one arm out while he is connected to his TPN)
Give the kid licorice.....much better! The only problem is that his older brother gets a little jealous and usually ends up needing his own piece.

His coordination to get this skinny piece of licorice in his mouth is still improving. He often misses but he gets that tongue of his and licks at it and makes the cutest noises.

And lastly, a Pajama shot. 13 lbs and 6 ounces of cuteness. We have fought sooo VERY very hard for these 13 1/2 pounds. And we're proud of them, and very thankful for them. Jax will never be the biggest kid in his class but that's ok. We wouldn't want him to be the biggest AND the cutest!

He is in the 3rd% for weight and 81st% for height. Our string bean. I am having the hardest time finding things for him to wear. His length is one size and his weight is another. He either gets to wear really baggy clothes or high waters. Hopefully we can even the playing ground between those 2 sometime soon.

Happy 6 months Jax. We are so grateful for you and so glad you're ours. We love every bit of you and fall deeper in love each day.

Love your guts!

End of October

Lots of pictures to finish off the month so I will start with Halloween and then go in no particular order.

Since we couldn't celebrate Halloween the way I had planned in my head we made the best of a crappy situation and delighted all the nurses with a cute monkey...

This monkey even had a felt banana to complete his costume. The hat hit his big old IV that was on the top of his head. Which I was glad for. Then when we look back on these pictures years from now, we won't even remember we were in the hospital.

We left the hospital for a bit and took Carter trick or treating around the neighborhood. He had a lot of fun and no hesitations at all. He even said Trick or Treat this year.

He wore the same costume this year, that he wore last year. Per his request. Although last year he called himself a dinosaur and this year a dragon. So really they were different costumes if you take that into effect. He is really smart and aware of his food allergies and takes them very seriously(luckily). At the doors where they handed out chocolate candy or stuff he knew he couldn't eat, he would tell them (politely) "I can't eat that, it has yuckies in it." We had to teach him that it was ok to accept the candy, just say thank you and we would trade it out for something he could eat at home. He kind of accepted that plan but would look over his shoulder at eat house that gave out "yuckies." I'm amazed at how well he understands the his allergies. He isn't the least bit tempted to eat stuff. And if it's something he doesn't recognize he would ask us first if he could eat it.

After trick or treating we came back to the hospital to see our little monkey. We put his costume back on for more pictures and then roamed the halls. Just to get out of the room for a bit.

Daddy with his dragon and little monkey.

Our little family on Halloween.

Moving on from Halloween...

This was taken a day or two before Jax went to the hospital. I thought he looked so big laying on his scale. We have our own scale at home and weigh him frequently. It use to be everyday until once again my mental health couldn't handle that. Now I have promised Neil to only weigh him twice a week. Being short gut weight is very precious and sometimes hard to come by so it's a constant worry for me. But I'm happy to report that Jackson finally hit 13 pounds. And 13 pounds has never looked better. Hoping to see 14 lbs faster than 13 but we'll see.

Along with everyone else in Cache Valley we hit up the Pumpkin Walk. We invited cousins to come along and Carter loved being with someone other than boring old mom and dad. The best part for him was riding the bus up there. Here are Tyler, Carter and Kayla waiting for the bus.

Our family in front of the Angry Birds exhibit. Carter loves playing Angry Birds so he got a kick out of his display.

My favorite part...the head slots. Kayla, Carter and Tyler. Carter is never thrilled about getting his picture taken but he really enjoyed it tonight and was going from cartoon to cartoon posing it up.

I love this picture. He has no idea who this is but he sure make a pair of seashells and a tail look good doesn't he?!?!

Here is Carter's new trick. I don't like that he's learned this trick but I do find it hard to not laugh. He now goes and hides in his closet if he is doing something he knows he shouldn't. I found him this day with the Ipad (I had told him no games that morning so he just snuck it instead). The morning after Halloween I found him in here with 3 boxes of candy. The best part is that he's learned to hide but he gives himself away so easily. If I call out his name he immediately answers and I catch him red handed!

Onto the birthday bash........

Carter was so excited for my birthday and has been for weeks. He would randomly come up to me through out the weeks and give me a big hug and tell me "Happy Burt-day Mom." So sweet. He kept asking me what presents I wanted for my birthday and I tried to give him some ideas/hints that would be easy for him to pick out. Once I got done with my list he would say "Don't you want a green race car for your Burt-day?" Or "Don't you want an ambulance with doors that open and has a siren?" And I'd tell him that in fact I didn't want those things but he should write those things down on his list for Santa. He ended up picking me out some lime green slippers, which I actually hinted about. He chose the final pair all by himself and kept asking me "Don't you like your slippers Mom?"

We had been planning on baking a cake together and decorating it some way fun. We had planned on making a Mickey Mouse cake (guess whose idea that was...) but with being at the hospital all day that just didn't happen. Instead we had a round boring cake. But it was still delicious. Thank you to Duncan Hines who doesn't put milk powder in their cake mixes. I just used their cake mix(usually I have to make everything from scratch) and added egg substitutes instead of real eggs. Then I added a TB of applesauce to keep the moisture in. This cake was so moist and delicious. Vegan cooking is really starting to become my talent.....

On to Mr. Jax

When he wasn't fevering he was actually very happy while in the hospital. Except when they had to place that darn IV in his head or arm.

Here he is at the ER. Playing with his favorite toy. He has come a long way with his interest in toys. Before he knew nothing of toys and therefore, had no need for them. Now he knows just what to do with them and they go straight to his mouth. And he actually holds onto them and is really starting to use his hands. He wants to grab everything now, including my hair. He kept pulling the Heart Rate monitor(red thing on stomach) off his stomach. I love seeing him improve with things like that and catching up. He's a quick learning. Now on to mastering rolling....

Here's to a great November and celebrating all we are thankful for. Which is a lot!