All is Right in the World

This morning, Saturday, was a good day. Jackson was able to ditch the vent and is breathing perfectly on his own. He gave us quite a scare yesterday but proved he just wanted to do things on his own terms! And now he gets his precious binkie back!

This is the first time I've held him since before surgery on Wednesday. And it wasn't really holding him because he is still in a significant amount of pain. He just laid on my lap. But we both enjoyed it. He could only tolerate being held for about 15 minutes but it was so nice to hold him again.

Funny thing about my 2 boys. But by funny I mean horrifying. They are breath holders. Carter started that lovely thing at about 1 year of age and it continued for about a year. Getting so mad that he would hold his breath until he passed completely out. Scared the crap out of us. He only did a handful of times but that is more than one person should be. The Dr. just told us to ignore him when he did this because he could start to do it for attention. It's pretty hard to ignore your child when he's purple and about to pass out. Carter did it a couple of times when I would suction his nose with the blue bulb syringe. Luckily, he seems to have outgrown it. Sadly, Jackson also picked up this gene. He's held his breath several times in a screaming fit, but hadn't come close to passing out. Until yesterday. The RT came in to give him a spontaneous breathing trial and decided to start it by suctioning his nose and mouth. And then turned the vent wayyyy down. Well Jax got ticked from being suctioned, held his breath, turned purple and passed out. Scared me to death. So at his next breathing trial, I left the room, and the RT didn't suction him. He passed with flying colors so they pulled the vent and he's been fine ever since.

He still has the Anderson tube in his nose to suction all the stomach juices out of his stomach. Once his bowels wake up we can pull that and start back with eating. Luckily he hasn't really noticed that he's been without food for 3 days.

The bad part of this stay.......SHARED ROOMS. We have been spoiled in all of our other hospitalizations with private rooms. But I will try to be patient and hope that we get transferred soon.

The plan is that once he starts eating, and keeping it down, we can come home again. Hopefully in another week or 2.

Thanks for all the prayers offered in his behalf and the texts and phone calls. They mean a lot.

Surgery

Tuesday was a busy day. We found out that morning that Jackson would be having surgery at Primary Children's at 12:30. So I did the panicked, fluff and stuff packing and headed down. We don't even put our suitcases away anymore. They are permanent fixtures in our room!

This was his "take down" surgery to connect his bowels. The plan originally was to do it in November but he was having minor, minor complications(annoyances) really with some things so the surgeon decided to not wait until they became major complications. Let me tell you, I could have hugged this man. This surgery will make Jackson's life and our lives a bit more simple. There will be less leaking and less poo. Enough said.

The cutest patient in waiting room. Who knew hospital gowns and pants could be so darling. The annoying part was that everyone who came in the room kept calling Jackson a "HER." Not sure why. What part of blue top, blue pants and red socks, along with the name Jackson did they not get.

I was so nervous that Jax would be a monster without food. Demand feeding (eating what he wants, when he wants) really suited the little guy. But this day he did amazing. What a blessing. He woke up hungry but was quickly soothed with a binkie for the rest of the day. And being in a moving car is like a sleeping pill for this baby. He was flirting with the nurses all day and flashing smiles. What a doll.
He was so happy to lie on the bed and kick around. He didn't end up going to surgery until 6 pm...12 hours after his last meal. This was MAJOR surgery but the surgery itself went really well. After they connected the 2 ends of his bowel they put blue dye through to check for leaks. There were NO leaks and it moved all the way through without any problems. We are hoping this continues. He was in the operating room for almost 3 hours. The end result is a 3 inch scar on his abdomen. 3 inches isn't much until you consider that his little abdomen is probably only 5-6 inches across. They put 2 drain tubes where his stomas were to keep fluid from potentially building up there. He has no more stomas though. No more bags, no more buttons, no more tape, gauze, and no more tears. And the tears were mostly mine.

This is my sweet baby after surgery. I almost didn't take a picture because I hate seeing him like this. But when he gets older, maybe he'll like to see how far he's come. While surgery went well, recovery has been a bit of a different story. He didn't come out of anesthesia very well and so they sent him to the Pediatric ICU. He wasn't able to come off the ventilator right away like hoped, but it's not unexpected. He is in a lot of pain from the incision and so they keep him on a lot of pain medication so he can sleep through the worst days. Another setback was that he didn't get to eat or be on his TPN for most of the day so he came out of surgery a little dehydrated. He also needed a blood transfusion while in surgery(which wasn't unexpected either, he's anemic).

They turned down the vent today and he was breathing so great by himself for about 2 hours and they were expecting to pull the vent when all of a sudden he quit breathing. Had a small apnea really. We had just left to grab a quick lunch when I heard the intercom say "Code Blue Room 2309." My heart dropped to my feet. That was Jax's room. I ran back and found everything ok. He just fell too deeply asleep for a moment and forgot to take a breath. With one breath for him, he was back to normal. But having a Code Blue called on your baby is not something you forget very easily. So they will not be extibating him today. Which I am fine with. He needs pain medication to handle the pain and that makes him so sedated so he doesn't focus too much on breathing. I just want him to rest for a few days and then try it. He will be able to come off the vent fine when he is not on so much pain meds.

I can't hold him. He's in too much pain to be manipulated. And I totally understand. 3 months ago I had my stomach cut open and it does not feel good. But I do miss holding him. This is the first time, since he was 3 days old that I haven't gotten to hold or snuggle him. Very anxious for that time and to have my happy, smiley baby back.

His intestines are reconnected now but his road is still long. Being a short gut patient is more complex than I first imagined. He will still be on TPN for a long time. Maybe even forever. It's hard to admit that and say it out loud. His lack of intestine may never be able to absorb all the nutrients it needs to sustain his body. Only time will tell. The surgeon did say that he, out of many short gut patients has many things going for him.

Some of those advantages include: his loss of bowel is not due to infection, he has his full colon(most of your water absorption happens in the colon), he has something in his ileum called the ilesocecial valve, some ileum and amazing parents. (i made the last one up because I can't remember the last one!) So they are hoping that if a short gut person can make it off TPN it can be Jackson. After surgery the surgeon did tell us to pray, and pray a lot for Jackson. Give him lots of blessings. Put his name on the temples prayer rolls. He has a long road ahead of him. But we are optimistic, as are the Drs. He has surpassed every expectation they have had for him and made progress at a fantastic rate. I pray each and every day for him and his progress. Will you join me? Will you pray for my baby? A few extra prayers never hurt anyone.....

And I threw in one last picture because it's cute. He's not pouting in this picture. He's just discovered his lips and tongue in the last few days and uses them in the cutest ways!

Jinxed

Remember in a previous post where I said we hadn't been in the hospital in August yet? Well I jinxed us. Last Sunday we woke up to find Jackson with a low grade fever. In most babies a fever this low wouldn't require immediate action. With Jackson any fever gets us a quick departure to the hospital. Once again Jax had an infection in the PICC line in his arm. They tried to kill the bug and keep the PICC in but sadly the BUG won and they pulled the PICC.

I can't tell you how depressing it is to have to take him back to the hospital AGAIN. (I am typing this post from Primary Children's.) Here we are on day 7 of his hospitalization and won't be released until tomorrow. I keep thinking that surely he deserves a break and that we'll be home, safe and sound until his big surgery in November. And I may have murmured when this fever started. Saying things such as: It's not fair. He doesn't deserve this. He's too tiny and cute to be stuck in the hospital. When will it ever end?

But on the other side of things I am trying to look at the positives. Such as: We got to stay at Logan Regional for 6 of the 8 days which makes it so much easier on everyone. Logan Regional knows Jax very well and he gets his own personal nurse 24 hours a day. He doesn't have to share her with anyone. So if he needs rocked in the middle of the night, she can sit there all night with him. Also-we have only had to buy one package of diapers because we are in the hospital so often and they always send us home with extras!

It is so hard trying to find/keep a balance while Jax is in the hospital. I feel guilty if I leave him yet I feel guilty if I'm away from Carter for too long because he needs me to. I feel like people will judge me when I say the next part: I don't sleep at the hospital at nights with Jax. I tried that before. I slept about 60 minutes the whole night and those 60 minutes weren't even together. Then I was so tired, more grouchy and more emotional than normal. Those nurses are coming in and out of the room almost constantly. Luckily Jax can sleep through most of it, I cannot. The social workers at the hospital are constantly telling us that you can't take care of your sick baby unless you take care of yourself. So I try. Which I have decided means leaving at night. Luckily Jackson doesn't notice and won't remember. He's such a great sleeper.

Moving on.............

Carter has really been into playing "Doctor and Ambulance" lately. Go figure. He knows more medical terms than most 3 year olds. After we grew tired of playing for the 100,000,000 time we decided to let him practice his skills on a real patient.

This day was one of the best of my life! Jackson was totally digging the attention from Carter and laid there content, cooing and smiling for the whole exam. It melted my heart.

Carter started the exam by looking in his mouth. I didn't think he'd really put the mirror on the stick in there, but he did. Jackson was quite grateful for that. Something new to suck on!

Side Note: Carter usually starts his exams with shots. And usually 5-10 shots! But right before he started he made it very clear that he wouldn't be giving Jackson any shots. He kept saying over and over "Jackson needs no shots, they will hurt him." I was amazed at how sweet and concerned he was with Jax. He knows they are pretend but still didn't want to give his brother any shots.

Then came the blood pressure cuff. Carter declared his BP as 100 plus 40!

The he got out his trusty stethoscope and proceeded to listen to many different places.
Jackson got the all clear!

Last but not least was his temperature. Do you notice Jackson's full cheeks? This little guy is weighing in today at 11 lbs 11 oz! He is really porking up finally. And the best news of the day: Jackson gets to start Demand Feeding tomorrow. Which means he gets to eat what he wants to eat, when he wants to eat it. No more rigid 3 hour schedule. Which means a happier baby and happier parents! We're just hoping his little body can handle this big change. Keep your fingers crossed!

PS-Dr. Carter Etherington is currently accepting new patients. No insurance needed. Experienced in ambulance rides, epi pen shots, and tender loving care. Call now for an appointment.

Carter Adventure Day

Each week we've been trying to give Carter a special day where it's all about him. Which is rare these days since Jackson has come along. Last Friday was his special day. It started out as Mommy/Carter time. We went to Wendy's for a wonderful lunch (for Carter) and then hit the splash park. Carter loved it until he was knocked flat by an older boy and scraped up his side. Then he wanted nothing to do with it.

After the splash park we both took needed naps and then waited for Neil to get off work.

we had a pizza picnic in the park and then headed to Logan Lanes. Per Carter's request. We tried to talk him into a movie but he wanted to go bowling. So bowling it was.

He insisted on carrying his own ball. I thought for sure we'd be in the ER with a broken foot later but he did really well.

The best part about bowling for Carter was watching his ball come up and out of this "tunnel." As soon as he threw his ball down the lane, he didn't even watch to see what pins went down, he ran straight to the tunnel to watch for the returned ball.

The next day we took a family adventure.....we even invited Jackson along. We headed up to Tony's Grove and spent the afternoon playing in the water and walking around the lake.

Daddy and Carter enjoyed the freezing water while Jax and I enjoyed the sidelines.

Do babies get any cuter than this? He was so content to sit in the stroller and watch.
We had a great weekend together. We were getting comfortable being home again. Then Jax went back to the hospital the next night; which deserves a post of its own really. Carter has been so patient with all of the new changes in his life so we were glad to be able to focus all of our attention on just him for a day or 2.

The Boys

We have survived July. July only brought 7 days in the hospital for Jackson and 3 hours in the Emergency Department for Carter. Did you know it is no longer call the Emergency Room? Sadly we've been there enough to know this. More on Carter's visit later. We left Primary Children's hospital with Jax on July 31st at 6 pm...so we haven't tainted the month of August yet. We hope to stay out of the hospital for the entire month of August. Not counting the 3 dr. appointments we already have scheduled! Jax was at Logan Regional for 1 day and then a week later at Primary's for 6 days. His electrolytes were a little bit off and so they considered doing his reconnection surgery. Known as a Take Down in the medical world. After getting our hopes us, they decided to wait until he is about 6 months old. So almost halfway there. We can make it...............

After a very stressful week and thanks to free tickets from Neil's work, Carter and I escaped to Lagoon (or The Goon as called by carter).

The morning of Lagoon was the morning we spent in the Emergency Room with Carter. Apparently he is Deathly allergic to cashews. Neil grabbed a handful as he was walking out the door to work (who eats cashews at 8 am?) and Carter asked for one. He gave him 2. We thought that we had found everything that Carter was allergic to and that Milk and Eggs would be his only demons. I guess the list will go on. Carter ate 1 cashew, and 40 seconds later said his mouth hurt. Luckily we both knew what was coming, but praying that it wasn't really that.....seconds later he started vomiting and immediately after that his airway started to close off. We had his EPI pen handy and I made Neil give him the shot. Carter stills remembers the fateful day when he snuck cheese off someone's plate and remembers the shot Grandma had to give him. So he was crying and kept saying "Don't give me a shot, I didn't eat yuckies." Because to him, yuckies are eggs and milk. I covered his eyes and cried with him. My emotional state was very fragile at this point. Luckily epinephrine is a FAST acting drug and he could breathe a bit more easy after that. But Epinephrine only lasts for about 15 minutes so Neil loaded him in the car and sped to the ER. He did run one red light(carefully of course) and once there, they pumped his poor little body full of all kinds of steroids to keep his reaction from coming back. Carter was so brave at the hospital and didn't even fight the IV they placed in his arm or the oxygen sensor placed on his finger. He slept peacefully while the drugs flowed and after 3 hours with no more reactions he was released. We came home and got ready for Lagoon.

We were only here for about 5 hours but we had a great time and drowned our sorrows in Icees. Not even kidding. Carter went to Lagoon with his cousins and grandparents the week before and so he knew exactly which rides he wanted to ride and which ones to avoid. He is getting much braver in his old age and ventured farther than the train that goes around the park.

This was his favorite ride. He loved shooting things with the gun on front. I was shocked that he knew what to do with a gun and the sounds it made. He sure didn't learn that at home. I guess it is part of being Boy.

Carter has wanted more to do with Jackson lately. He tries to boss me around in my care for Jackson by telling me what to do when he's crying. Such as "Put his binkie in Mom," or "He doesn't like being unwrapped mom." He talks to Jackson in the cutest, highest voice I have ever heard. Melts my heart.

Carter is really into baseball since getting some baseball stuff for his birthday. I am so excited and hoping he'll share my love for the game. I spent some time with him one evening showing him how to stand, hold the bat, and even spit while at the plate. He even prefers having the ball pitched to him, verses hitting it off the tee. And he is quite good and makes contact about 75% of the time. I am already dreaming of his days in the Major Leagues!

Both my boys. Don't worry, Carter was actually being soft with Jax and not choking him.

My big helper.
Doesn't he look like a pro at holding a bottle?

Now that Jackson is a bit older, eating more and more, and feeling so much better, he has started smiling. I haven't been able to capture a full smile yet. This is as close as I've gotten. He has a darling smile, complete with 2 dimples that make all his care well worth the time. He is starting to find his voice and will have a little conversation with you. His fussiness has almost disappeared since eating more and feeling top notch. He sleeps like an angel and can now be awake without crying. What a wonderful change! This picture shows the PICC line in his arm quite nicely, if you've ever wondered what it looks like.

Jackson doesn't mind a little tummy time even with all the hardware on his stomach. He is almost 3 months old and is weighing in at a little over 10 lbs! Only in the 10% for his age but hey, we'll take what we can get. The Doctors are so impressed with his progress and the fact that he is gaining steady weight. Want a little anatomy lesson? The typical baby is born with about 250 cm of small intestine. Jackson only has 30 cm left. I cannot believe the things they can do now days and how they are helping my baby to live a normal life someday. Today, it is far from normal but we have every hope that he will live a normal life. The human body is truly amazing. The doctors said that his body will compensate for less bowel by growing bowel that is bigger around instead of longer. And having been this way since birth, they said the body will learn to cope and deal with what it has. He is our little fighter.

I am so grateful for my 2 little boys. Allergies and bowels and all!