Connor is home!

Yay!

Connor woke up Saturday morning like a different baby! He woke with his beautiful smile and I knew immediately he was feeling better. The day of surgery and the day after was like a battle to get a smile out of him, which told me he felt terrible. Friday night all he had was Tylenol and that seemed to control his pain so that made me feel much more comfortable about going home. Saturday afternoon he was discharged.

SATURDAY MORNING SMILES


AT HOME RESTING

Connor seems to be gagging less and less as the days progress. He seems to be tolerating his feeds at this point. We are slowly working on increasing his volume but can't do this too fast due to the surgery. For now he gets 3 oz feeds every 3 hours during the day and his usual continuous throughout the night. It feels amazing to not have to clean up vomit all day long!!! I know that has to make him feel much better as well. I am praying that this surgery is what he needed and he can pack on the weight now and possibly want to eat by mouth again.

MAKING HIS SPEECH THERAPIST PROUD BY USING HIS Z-VIBE

He is back to his wild self, wanting to jump & squirm everywhere! He keeps acting like he wants to crawl but the most he has gotten was like a frog hop! Now that he won't vomit from being in that position for a while, he can master this skill. His jolts of energy are short lived, he seems to be taking a nap every 2-3 hours right now..Thankfully, so his body can heal! ;)

WANTING TO CRAWL

PASSED OUT WHILE PLAYING WITH TOYS

I want to thank everyone for all the prayers, thoughts, phone calls, and visits. You all don't know how much it means to me. You all have helped me and my family through some of the toughest times in our life.

Surgery is over

Whew, surgery is over! Yesterday was such a long day for all of us. The surgery was expected to last about 2 hours but ended up almost being 3 hours long, talk about a crazy momma in the waiting room! Thankfully, all went well and now Connor is on the road to recovery.


Since the recovery room, he has had a low grade fever and he kept that all night long (even with Tylenol given frequently). Thankfully it hasn't gotten very high but between that and his pain, he hasn't felt the greatest. He isn't allowed to eat anything for 24 hours or maybe longer. You would think that would be easy for Connor since he typically doesn't express hunger but after all this he was chewing on his paci like crazy. After receiving morphine last night and it not really doing much for him, he now has nubain. Nubain worked very well for him when he got his gtube, so I was glad he was able to get some rest once he received that.


Thanks everyone for all the thoughts and prayers, please continue to keep him in your prayers while he recovers :)

GETTING READY TO GO TO THE HOSPITAL

ARRIVED TO THE HOSPITAL EARLY, SO CONNOR PLAYED IN THE CAR

PLAYING WITH HIS FUN TOYS BEFORE SURGERY



ONCE CONNOR GOT TO HIS ROOM AFTER SURGERY, HE WAS IN LALA LAND FOR A WHILE!

MOMMY FINALLY GOT TO SNUGGLE WITH HIM



SNOOZIN' AWAY IN MOMMY'S ARMS

Nissen Tomorrow

Age: 10months/7months

Wt: 14lbs 9oz

Please say an extra prayer for Connor tomorrow, he will be having a nissen. We have had mixed feelings about doing the nissen but after the pH probe results, a 1oz weight gain in 2 weeks due to vomiting so much, and starting to show more developmental delays we have made the decision to go ahead.

Basically his pH probe showed that his acid was well controlled, and I believe it should be because he takes multiple medications for his reflux. It showed he has significant reflux, well duh...we knew that! :) It does make me feel a little better knowing that every time he refluxes it wasn't causing major erosion because the acid was somewhat controlled.

The weight gain or more so lack of weight gain has been a major worry for me. I know Connor has started out at 1lb 8oz and that he has come a long way but he has basically plateaued the past several months. I start to stress about brain development when he isn't growing. I would have expected once we started the microlipids and doing continuous feeds at night that he would have gained alot of weight but I was wrong. We ended up having to change his schedule during the day because 4oz at a time was just too much and he would spew everywhere, multiple times. So he now gets 3.5oz 4 times a day and still the continuous during the night.

As far as developmental delays, he had his 6 month evaluation with Bright Start last week. We got the results yesterday. Obviously Connor is going to have delays based off his actual age, but for the most part he was keeping up with his adjusted age. All of his therapist showed a significant slow down in his development once all the feeding issues started and all the different feeding tubes he had. I knew this was affecting him because he hates to spend time on his tummy, and we can't work on trying to crawl for long because he coughs, gags, and vomits almost every time...regardless how far out it has been from a feed.
After all of those things, Josh and I decided a nissen was absolutely necessary. Basically a part of his stomach will be wrapped around the lower part of the esophagus to tighten the sphincter. It is a permanent surgery, so Connor won't be able to vomit or burp unless it starts to loosen. It will also make his stomach a little smaller so we will then have volume issues, but we will cross that road when we get there :) Assuming all goes well, he will probably be in the hospital 5 days... I am hoping a little less.

I will try to update frequently while we are in the hospital.

Continue to pray

Some updates on Connor's health....

Age: 9/6 months
Wt: 14lbs 8.5oz
Length: 25.5"


Things have been like a roller coaster, one minute things are going well and then all a sudden there is a change. Not sure why we would expect anything different, Connor has lived his entire life with this motto! ;)


He has continued to gain a small amount of weight one week and then loose a significant amount the next. Our pediatrician or GI Dr can not figure out why, all of his labs are normal and he is getting all of his formula through his g-button. Connor continues to refuse all formula and will only take a few bites of baby food per day. Last Friday we changed his formula once again.He is still getting the soy formula but now is getting microlipids added to it for higher calories. His doctors didn't feel comfortable increasing his calories any higher than he already was on his formula. The microlipids are basically a fat emulsion that is added to help put on weight. He gets 3 4oz feeds during the day and from 9pm-6am he gets a slow continuous feed. Hopefully that will help decrease his reflux issues and help him gain weight. I am curious to see what his weight is this week.

Playing with his sweet peas:

Monday morning Connor had to have a pH probe study, thankfully we were able to do this outpatient. The GI doctor wanted to get an idea of how severe his reflux truly is. He mentioned a Nissen the last time we were at his office but wanted to see results from the pH study first. Connor was going to get a Nissen when he had the gtube but didn't because he ended up having a MRI and gtube done at the same time. I am open to the nissen if it is absolutely necessary but I want to try all nonsurgical things first. We should get results from the pH probe next week.

At home with the pH probe:
We are in the process of going through the referral process to Marcus Center in Atlanta, GA. Marcus is an autism center but also has the leading feeding program in the southeast. I have heard some amazing results from there. I am hoping they are our answer to help to get Connor to eat again. We will have to travel to Atlanta for an evaluation first before they determine if Connor can receive therapy there. The other thing we are waiting on is for my insurance's approval to cover this, we had to send a letter stating why Connor has to go there. I pray they will help cover some of this because I can't imagine how much this will cost out of pocket!

Connor's First Christmas

We had a fabulous Christmas with our sweet pea. Josh and I had the best Christmas present ever...to have our miracle here with us. Apparently Connor was on the GOOD BOY LIST judging from all the gifts he received!

Here is Connor sitting in his wagon filled with all the gifts Santa left for him Christmas morning. Oh course he would get something John Deere...his Daddy would not have it any other way!

Here are a few of his photos from the shoot Ashley Uhl did before Christmas.

Making progress

Wt: 13 lbs 12oz (last Wednesday)

There have been alot of changes since I last posted!
We started the Periactin and saw quick results! We started it one night and the next day Connor was fussing when it was time for his next feed, was sucking on his paci, took small amounts from the bottle, and became more interested in his baby food. I also noticed that the numbers and volume of spit up went down tremendously. Unfortunately, this was very short lived :( I think we can blame a tooth for that.....and as of today he now has cut his 2 bottom teeth! He may be ready for some steak real soon! Connor is on a 2 week break from Periactin because it becomes ineffective once they build a tolerance to it. Weight gain has been slow, so his GI doctor has increased his formula to 28 calories/oz now instead of the 25cal as before. Man, are we going through the formula super fast now since it is so concentrated!

Connor now has his g-button!!! Yippee!! That means he is taking real tub baths once again! It is much nicer. There isn't an entire roll of tape on his stomach holding the tube, it is so much easier to get dressed, and only a "toy" when he is getting fed otherwise it is out of sight! Every 6 months his button will get changed out, even though I am praying he won't need it for multiple changes. Here is a pic of Connor & Mommy waiting to get the button:

A while ago Connor and Kennedy (NICU friend) had a play date. Kennedy is too sweet... she is a few weeks younger than Connor and is definitely showing him up with her sitting skills! ;) Tomorrow they have another play date, or more like Mommy's exchanging physical therapy techniques. I will post pics later!

Last week Connor went for his monthly synagis shot. He gets a synagis shot monthly from Nov.-March to help prevent him from getting RSV. I am so thankful he qualified to get these shots and that insurance covers them :) Those boogers are $1300 per shot!!! After that, I decided we would take a trip over to the NICU to drop off our Christmas card. I was not prepared for all the emotions that were going to hit me at that time! As I carried Connor down the long hall to the NICU, the first 3 months of his life flashed before my eyes. I remember dreaming of the day I could bring Connor back to see all the amazing people that were involved in saving Connor's life and now it was real! All the smells and the relaxing classical music brought back so many memories and feelings. It was so great to see some of the people that took care of him, even though we didn't get to see all of them. We wouldn't have Connor here for his first Christmas if it weren't for the all fabulous people in that NICU. A perfect reminder of how truly blessed we are to have our little guy.

A little discouraged

Monday, our weekly weigh in: 13 lbs 4.5oz :(

You can see, Connor lost 3 oz the past week and I have no idea why. I wanted to burst into tears as I stared at that reading on the scale! We are doing the same thing that we have been doing the past several weeks so I don't know what is going on. It if very discouraging knowing that we are trying so hard and to see weight go down. We are to go back at the end of the week and see how his weight is and that gives his pediatrician time to think about any labs.

Meanwhile, I spoke with his GI doctor. FINALLY, after I have been mentioning this medication for several months , Periactin has been introduced into Connor's regimen. Periactin is an antihistamine with the side effects of increased appetite so sometimes it is used as an appetite stimulator. He will take it every night (since it also makes them sleepy) for 2 weeks then 2 weeks off since you build a tolerance to it and it quits working. I pray that this medication helps perk Connor into eating, it will be several days before we will notice anything (that is if it works). He is also referring Connor to a doctor in Spartanburg that specializes in rare feeding issues, maybe she will give us a different insight on things.

Speech therapy has recommended we pour baby food on Connor's tray while we eat supper. Each night, Connor is slowly increasing his interest in playing with the food. It becomes VERY messy but we have to encourage a positive, fun environment when it comes to eating. He absolutely will not put his fingers in his mouth if there is food on it!! It amazes me because most of the time his hands are in his mouth! That just shows how much he does not care for food :( Hopefully over time, this will get much better and he will enjoy playing and eating his food.

Today was also Elizabeth's yearly Christmas cookies at her house. In case you forgot who Elizabeth is, she was one of Connor's amazing NICU primary nurses. Obviously Connor is a little too small for doing cookies but he sure did enjoy watching the other adorable children play. We can't wait for the Easter egg hunt that Elizabeth does at Easter...She really is amazing!! Here is a picture of them two together :)