We got him home!

We finally got Memphis home yesterday around 3 pm. He was a little trooper on the ride home, but was pretty upset for the last about 30 minutes. He has been doing well over the last day!

The days become very short with a baby that demands that much attention. Most of our everyday things are thrown into the few minutes we have between feeding, medicating and all the other things we have to do at home. Its definitely a trick walking through the house with a feeding tube, oxygen tube and two monitors hooked up.

He has been sleeping through the nights! This is especially wonderful just for the fact that mom and dad get some rest. He is truly a wonderful little boy.

His health hasn't seemed to change at all with the move. Other than our heat in our house drying out the air, because its gas heat, he doesn't even seem to notice. We had a small retching episode this morning, where he looked like he was actually going to throw up. I feel like it was just some gas trouble. We are still gonna keep an eye on him though.

Thanks everyone for checking in on him, and i will post some pictures over the next few days.
We will keep everybody updated.

Breaking out

So we finally made it out of the NICU! Memphis and his family now have their own room. After a day or two of proving that he could do it on his own, with feeding and growing, they moved him downstairs. Now it is time for mom and dad to prove that they can take care of Memphis with minimal assistance. No Problem.

Memphis' first day in the room went well. He was upset from getting a round of vaccines, but other than a little fussing, all went well. He is still getting used to the feedings, and mom is working hard on getting him to do small feeds by mouth, which he still hates. Hopefully a few days of this and we can get the little man home.

A few of Memphis' nurses from the NICU have come down to see him. Its obvious that he was loved up there, and he is so lucky to have the kind of care that they were able to give him on this long road he has travelled.

Wish us luck!

Yesterday was a good day. Memphis was awake and smiling at some points during the day. This is wonderful based on his screaming and crying that he has had over the last few days. Mom, Dad and Sissy had him almost laughing during the evening!

Memphis had an field trip today down to flouro. They wanted to check his kidneys, and make sure there were no blood clots around them. They felt that his high blood pressure may have been caused by a kidney issue, but the test did not show any issues with his kidneys!

As the days go on, we get closer and closer to being able to go home. How wonderful it will be to have the whole family together again. We don't want to rush it, but the sooner the better. All of the nurses seem to think it won't be long now!

Another hard day :-(

Memphis has spent most of the day screaming and crying today. Before this fundo and gtube, Memphis was not a super fussy baby, but now he cries all day in pain and tired. It's one of those cries that no amount of consoling will help. Mom rocks him till he cries himself to sleep :-(. I hope it doesn't take too long to get his tummy stretched out and used to food.

We saw the genetics doc today, all CDH babies get genetics testing done because nobody really knows what causes it. The test showed that Memphis has a unidentified chromosomal abnormality -- it could be nothing or something, the doctors don't know yet. Because of this, mom and dad will get blood drawn and tested. If mom or dad have the same abnormal chromosome then more than likely it will be nothing to worry about for Memphis seeing as both mom and dad are fine. If both mom and dad don't have this abnormality than the next steps will be taken to figure out what it means. Add this to the brain damage, the poor little man can't catch a break.

Memphis was put back on the blood pressure med today. They tried him for two weeks without it and his blood pressure kept creeping higher and higher. The renal doctors are also wanting to get some tests done to make sure there are no clots in the kidneys causing high blood pressure.


What a little trooper, everyday brings great challenges

Not a good day

Memphis has had a rough few days. After the fundoplication and g-tube surgery he has been understandably grumpy. We would have hoped that this would wear off by now, but as of right now it hasn't. He has obviously been in pain either due to the discomfort of surgery or the new bolus feeds. He has been receiving about 68cc of milk every 3 hours instead of a continuous sloww drip of 25 cc an hour. We feel like this is an issue and have spoke to the nurse practitioner about changing him back to the over time kind of feeding, and they did not oppose that. So he will be going back on continuous feed. The milk seemed to be making him very uncomfortable. Going from never having anything in his tummy to getting a large amount all at one time has not been good on Memphis' poor tummy. He was refusing to be held even. Today, he was so upset that he was turning deep red while crying. Something is wrong, now we just have to determine what it is. The milk may have been causing his stomach to cramp?

The doctors decided to remove his oxygen to determine whether or not he needed to go home on oxygen. After rounds of screaming and crying, he would desat, meaning his blood oxygen level would go down. This ultimately means that oxygen will be a necessity when we get him home.

He has been in pain all day. Memphis' heart rate has been in the 200s rather than his normal 140. Please keep our little man in your thoughts, and hope he recovers from this soon.

The last few days have definitely been interesting. Memphis has been very fussy, understandably, after the surgery. As of today they still haven't allowed him to eat. They are planning on letting him have some clear fluids today and then milk on the subsequent days. Hopefully this will let him be a little calmer. The surgery recovery has went smoothly. He coughed up his ventilator tube that night, and has been on nasal oxygen since then. This has been going well and they have weaned it down to where it was before the surgery. The days are long for him without food, and the only thing that calms him is his pacifier, which he has a difficult time keeping in his mouth.

We are hoping they can get the feeding started, so that he can finally calm down.

Surgery

The surgery went great. It ended up taking longer than it should have, four hours instead of two. This was due to two things, 1. Memphis had so much scar tissue from the first surgery that the Dr. Had to get through and 2. Memphis' liver was where the gtube needed to go (the anatomy of a CDH baby is not as it should be) and because they couldn't just put the tube through the liver they had to reroute and put the tube somewhere else. He did come out of surgery still on a ventilator which means a tube back down his throat :-(. He will stay on the vent until he wakes up enough to breath on his own.

Memphis is now resting as best as possible. He does wake every so often a little and starts crying from pain (back to crying with no sound). Poor baby...