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 :)

8/5 months old

Connor's Caring Bridge site will no longer allow me to add photos, so I decided we would go to blog spot. :)

Age: 8 months actual/ 5 months adjusted
wt: 13lbs 7.5oz
clothes: 3-6 months (FINALLY!! YAY!)

Connor is doing ok. His feeding aversion seem to have gotten worse lately. He absolutely refuses a spoon now. He was working on drinking his formula from a cup, but has recently started refusing that as well. Pretty much every feed I try a bottle, sippy cup, open cup, or syringe....sometimes we have a LITTLE luck but most of the time it is a no-go.

Speech therapy continues to come twice a week and recently has started Connor with a Z-Vibe. It is a small vibrating "toy" that goes in his mouth to help stimulate his mouth and tongue. Basically, he isn't digging it when it is vibrating but he will chew on it like crazy if it is off.

He goes for weight checks weekly and the doctors want him to be gaining at least 4oz per week, so a pound a month. Sheesh, it is definitely a slow gain but so far he seems to be accomplishing this.

The most exciting update.....He gets his button on Dec.8th, so next Thursday!! Right now he has a long gtube hanging from his abdomen. Once he gets his button it will be a small piece that we use extension tubing to access it...which will make it out of sight for this little boy to be pulling on!