Jackson Update

I am way behind in posting so I hope to get a little caught up.

At the beginning, Dr.s predicted that Jax would be in the hospital for about 12 weeks. And we were prepared to be in SLC for that long. We had our apartment, Neil had moved offices to work out of SLC, and we even had trips to the zoo and Lagoon planned. On Carter's birthday, while here in Logan one of Jackson's Doctors called us to give us the update on him that day, since we wouldn't be in. She mentioned how well he was doing and blah blah. Then she continued with "And since he's doing so well, there is no reason why he can't go home next week." I was speechless. It had only been 4.5 weeks. He had just been moved to the Infant Unit 4 days earlier. So his release was set for the next Friday and boy were we happy. Happy but still not really believing the news. We only told a couple of people in fear of jinxing ourselves. We didn't even tell our landlord. Then came Tuesday. In came the Drs on their daily rounds. Then came, "we've decided that there is no reason to wait til Friday to release you. Would you like to go home tomorrow?" And the answer was YES! We packed up our whole apartment in record time, cleaned like crazy people and were ready to go Wednesday.

Jackson had a great last night's sleep in his hospital bed.

Grandma Susan was present for the good news that day and helped to pack and clean.

There were tons of last minute things to sign, learn and do before we could leave. We didn't get to leave until almost 6 pm. It was a long, long day.

Jackson was not as excited as we were apparently. Jackson is a particular little guy. He HATES to be unswaddled. Even though its warm and toasty inside he needs that comfort of being tightly swaddled.
Here is proof. Swaddle him up and he goes right to sleep. A binky never hurts either.

Here we are finally ready to leave the hospital after 37 days. But who is counting right?!

I wish the story ended there. I wish I could write that it was happily ever after. But it wasn't, and it isn't. The first day home was HARD. I didn't get a shower for 48 hours. And I won't mention how many hours I went without brushing my teeth. It was significantly shorter than 48 though.

Jackson required a lot of care. He has to eat every 3 hours along with all his other care. He has 2 pieces of "hardware" on his stomach that need almost constant care it seems. Changing bags, changing dressings, along with other newborn basic care. Plus he's hooked up to 3 different pumps. Which all needed their lines changed daily.

Good thing he is so cute which helps to block out minimal sleep and 6 loads of laundry a day.
Carter is enjoying having him home. He is slightly indifferent to him but does occasionally want to kiss him and interact with him.
Here is Jackson's Life Flight shirt he received from being transported the 200 steps from the U to Primary's. It only cost $1800. What an expensive shirt!

After his first bath at home. Which he hated. And still hates. He has to have sponge baths for now because of the Central Line which is in his left arm. It cannot get wet. I cannot wait for the day he can splash around in the tub. I'm sure he will enjoy that much more.

Here is a rare picture of Jackson dressed. We've decided that it really isn't worth it to dress him. Getting to all the stuff on his stomach and not to mention all the leaking......it's just easier to put a diaper on him and wrap him up.

Carter helping to feed brother before bed. I think it was an excuse to stay up a bit later. But it made for a cute picture!

Now comes 4 days after being released from Primarys...........

That's right. June 27th Jackson goes back to the hospital with an infection in his PICC line in his arm. I got up to feed him in the middle of the night and he felt quite warm. I got out the thermometer and sure enough....102 degrees. The Drs warned us about how common these infections were and that most people end up back in the hospital. We just never thought after 4 days.

Luckily our wonderful pediatrician was familiar and comfortable in treating this type of infection so we didn't have to return to Primarys. It wasn't fun being back in the hospital but was much nicer being 2 miles from home vs 90 miles. The nurses at Logan had never seen a case quite like Jackson's so we were in charge of most of his care, but ended up teaching them how to do it. It's crazy that we are so knowledgeable about these types of things.

We did end up back at Primary's to have a new PICC placed. Logan thought they could place one but I felt more comfortable with Primary's doing it. Notice 2 things about this picture. 1) the IV in his head. Poor guy kept blowing thru veins and his veins are so tiny that the best ones ended up being in his head. 2)the little truck thing on his stomach. This is called a "Freddy the Frog." They use them in the NICU. It's basically like a bean bag that helps them feel more swaddled, more secure. Jackson is addicted to them. So luckily Grandma Susan traced the pattern and made her own. It is a life saver for my baby.
After 8 days in the hospital Jackson is back home in his own crib. And we've been here ever since. The days seem to either be really good or REALLY BAD. We love him dearly but it is truly exhausting taking care of him. Physically and emotionally.
A close up of the head vein. The night before we left Primary's for the second time he got his first blood transfusion. But probably not his last. Because of having a short gut he doesn't have as much intestine to absorb nutrients and specifically Iron like we do. So he is a bit anemic. He received 40 mL of Packed Red Blood cells and boy did it make a difference. He pinked right up. He also has a bit of a heart murmur which is common in newborns, but also common in someone who is anemic. The Drs are confident that as he gets bigger and better, his murmur will go away.

Leaving Primary's for the second time. I dressed him in the same going home outfit for good luck.

Now that we are home again we are trying to settle in to a routine. Our insurance covers Home Health nurses to come to our house for whatever we need them for. Right now they come once a week to draw his blood and to change the dressing on his arm. Everything else, we do. But it is nice to know that we can call someone if needs be. Jackson is up to eating 56 mL every 3 hours. To give you a reference, 60 mL is 2 ounces. So in a few days he will be eating 2 ounces every 3 hours. The normal for his weight and age is about 90 mL so we are still working up to that. The drs are amazed that he can even eat that much at a time. People always ask why he can't eat as much as he wants, whenever he wants. It's because he had major bowel surgery and it takes a long time for the bowels to heal. Plus, with him having a short gut he has less "room" to absorb nutrients and stuff like that. We have to work up slowly to avoid overwhelming his gut and make it shut down. Too much, too fast runs the risk of diarrhea and dehydration. He has had none of these yet and is doing amazing. In a few weeks he should be at full feeds if things continue like they are. The TPN he receives through his PICC line, in his veins, supplement what he is missing orally. He is gaining weight. Slowly, but surely. He's gained more weight than they thought for this point and they decrease his TPN weekly as he continues to gain.

Because he can't eat until he's full, he does feel a bit hungry. And a hungry baby=a crying baby. It's heartbreaking to not be able to give him what he wants but I trust the doctors and their expertise. Jackson really only has 2 levels....sleeping or Screaming. He doesn't really fuss or cry. He screams. And it is very draining. But you can't blame the poor baby one bit. He's just hungry. He wants to be held very frequently so most of my day is spent holding in his binky(his life saver) and rocking him. Because he is attached to 3 different pumps I can't walk him around or go from room to room. I have to sit on the couch. Imagine what my house looks like most days.

Last week brought our first checkup back at Primarys. Jackson met with his surgeon, his GI doctor and had a dye study done. His dye study was to see the size of his bowels and how they are doing. As a refresher, the top part of his small intestine was HUGE at birth, because of the blockage. The bottom part was teeny tiny because nothing was passing through. So we are waiting until the top part and bottom part because closer to the same size. The dye study would show if any progress had been made.

Neil and Jackson on the big table getting ready for the study. Many nurses and Doctors have commented on Neil and how hands on he is. They say how most often the dads sit in the background and let the mom do all the work. Not Neil. He does as much as I do. He can do every single care that I do with Jackson. He is as comfortable with it as I am. He gets right in and gets things done. I'm very grateful for his help and his engineering background to help me figure out how to best tape or situate a certain tube!

During the dye study they need dye to be in the stomach and watch with X-rays as it moves around in his stomach. There are 2 ways to get dye in there......drink it with a bottle or have it forced down your throat with a tube. The nurses were certain that Jax wouldn't drink the dye because it tastes horrible. We were certain that he WOULD drink it. Jax will eat anything put in front of him. Even his nasty Iron medicine is a treat to him. And sure enough, Jax downed that bottle of dye like it was fresh, warm breastmilk. And the best part for him, he had NO limit!! He drank over 2 ounces. Sure made the nurses job a bit easier. He didn't make one peep the whole time he was on that table. Makes me excited for when he can eat to his hearts content.

The dye study showed some great news....the bottom part of the bowel has grown and caught up to the size of a normal 2 month old. The human body is amazing. The top part is still quite dilated but they don't think that will ever shrink to normal size. So the plan is to "reconnect" him next month. We are so excited for that surgery. There may be one surgery after that to taper down the bowel but this is what we've been waiting for. This surgery will get rid of all the hardware on his stomach. He will most likely still be on TPN feedings for a bit because they will have to restart his oral feeds again while the bowel recovers again from surgery and learns to work all together. We found out that the procedures done on Jax have only ever been done on one other baby at Primarys. And he had a heart condition that didn't allow him to live very long so they didn't see the end result. There is no one else to really compare his progress to because he is paving the way. The things the surgeon did were truly amazing. The hope after the surgery is that he will live a normal, healthy life. No one will ever know he is missing most of his small intestine. We are hoping that worst case scenario is that he can't eat spicy nachos at Taco Bell. Cross your fingers.

We are just praying for the patience to make it through one more month. And we will make it. You're never given more than you can handle....right? As we checked out after our appt tuesday the nurse at the front desk asked if this was our miracle baby. I liked that. He is a miracle. Our miracle that we love very much and would do this all again for. I've decided that he is "Perfectly Imperfect." There is some reason he was sent to earth this way and we are very grateful he is here and in our family.