Delayed Gastric Emptying

Age: 13 months (tomorrow)/10 months adjusted
Wt: 17lbs 12oz
Length: 28.5"

Since the last post, we have started to do some testing on trying to figure out why Connor is vomiting again. Yesterday he had a gastric emptying study. My oh my what a tedious, long test for a 13 month old! It involved putting 4oz of his formula with a radioactive tracer through his g-tube. Every 15 minutes for a total of 2 hours, films were taken. This meant that a squirmy baby had to lay still for an entire minute-quite a challenge! After doing this the first 3 times, Connor had enough with the last 3! He vomited, which I expected since the 4 oz was pushed directly into his belly quickly (instead of on a pump over 30 minutes). I didn't think this test would give us any answers, but we are starting to get somewhere! The results showed evidence of delayed emptying, which means Connor will start taking his Erythromycin three times a day again.

Tired of his 2 hour long test

Checking out his dum-dum sucker, as directed by his feeding therapist

Unfortunately, Connor is loosing weight again. He weighed 4oz less than he did at his last GI appointment, 6 weeks ago. I think with the combination of vomiting, crawling, and the change in formula (causing lots of poopy!) His GI dr seems to think he is developing an intolerance to soy now (He already has a milk intolerance). :( So he is now being switched over to Pediasure Peptide. This is a peptide based formula, instead of milk or soy, and allows for easier digestion. We are trialing this for for 3 days before we can determine if he will need this or a more hypoallergenic formula. He is also switching from Prevacid to Nexium. And we are back to the hospital tomorrow for an Upper GI to evaluate the nissen.

New favorite place to go in our house!

Update on Connor's health

We hope everyone had a very happy Easter! I spent Easter working, taking care of the sick kids while Connor and his daddy spent all day with the family. I figured it was time to update on Connor's health status since the last 2 post haven't included any of that.

age: 12 months/ 9 months

wt: 18lbs 4oz

ht: 27"

I hate to report this, but....Connor has started vomiting again :( It started around 3 weeks ago. I am guessing with all of the gagging (which happens all the time), that his nissen has started to stretch. It is really disappointing because I was hoping for his nissen to last longer than 2 months!! It isn't the huge amount that he did before surgery, but it is definitely more than wanted. So we have tried a few things with his feeds like decreasing his volume and slowing down his feed rate on the feeding pump, nothing seems to really make a difference. Once again, Connor doesn't have a consistent pattern to figure out what is triggering the vomiting. He goes to see his GI doctor at the end of this month, so we will see what our next plan is.

As far as the feeding clinic, Marcus in Atlanta goes...well our insurance refused to cover treatment there. :( I believe I have cried all my tears on this subject and have decided to go the route insurance wants us to at this time. I was going to appeal, but you have to receive the service's first and then appeal. I am not comfortable knowing that we may have to pay everything, 100% out of pocket.Not to mention, I don't even want to think how much this specialized clinic would cost! I have spoken with Marcus and of course they accept Medicaid but Connor's secondary insurance (Medicaid) expires at the end of April. Therefore, timing is rather poor and not likely that he would get approved and have all his treatment complete before that expires. He qualified for the first year of his life due to his birth weight, thankfully. Now, I am in the looooong process of applying for Tefra (basically a type of Medicaid for a disabled child that doesn't meet the financial requirement for basic Medicaid). If he gets approved, then we will start the application process again at Marcus. So for now, Connor is getting therapy at my hospital's outpatient rehab facility every week, along with speech twice weekly at home.

The feeding therapist is very nice and has taken multiple classes at Marcus Center, so I am hoping she is our "Marcus Angel in Columbia". We have an entire different approach with feeding right now, and Connor isn't digging it. Who am I kidding, he doesn't dig anything that involves food! Only time will tell if this works, so I will keep you updated. From his last evaluation, it looks like this is going to be a long road to get to his full potential of eating by mouth.

March for Babies

This time last year, we were in the NICU and were surrounded by all things March of Dimes. I remember the secretary in the NICU asking us if we were going to do the March for Babies walk as we signed in to see our miracle. Of course we weren't going to last year, we had enough on our plate hoping and praying for Connor's health. But I vowed that as long as Connor was doing well, we would help support the March of Dimes and do the walk in Connor's honor!

*20 days old*

So here we are, a year later and we now have a team, "Connor's Crew" for the March for Babies. The walk is on April 28th and is 6 miles long! I think, 6 miles?! and then I think, of course we can do 6 miles after everything Connor has been through...this is nothing!

The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality. With the money we are able to raise equals more hope for each baby and family.

So we are doing 2 things to help raise money for the March of Dimes.
We have a team webpage :
Please help us reach our goal of $705, that's $1 per gram Connor weighed at birth!! It also prints your tax deductible reciept after you have donated. http://www.marchforbabies.org/s_team_page.asp?seid=1830313

Connor also is in the Angels & Sweethearts Calendar contest by Cynthia Pace. She does a calendar every year and donates all the money raised to the March of Dimes. So he needs your vote, please! The voting is the entire month of April. Each vote is $1, you may vote as many times as you would like and however much you would like. Like I said, each vote goes directly to March of Dimes and prints your tax deductible receipt afterwards!
http://www.cynthiapacephotography.com/vote/
Connor is Angel #7, in case you couldn't find that adorable face! :)

Everyone always asks us if they can help us in any way. I always turn everyone's offers away, but this is one thing you can do to help! :) Every family and baby that has ever been affected by prematurity or any other birth defects can benefit from your donation. I want to thank you in advance! :)

1 year old!!!

So, I have cried all my tears :) Connor is officially one year old and thinks he is a grown boy! The day after his birthday he started crawling and pulling up to stand!! Yippee for Connor, OH NO for Mommy & Daddy!!

Of course I did a Sock Monkey themed birthday party!

The diaper cover and party hat that I made

The favors: "Thanks for monkeying around with me!"

Hard to see in this photo, but this was his "clothes line". His sign that was on his isolette, his smallest blood pressure cuff, xsm preemie diaper that had to be folded over to fit, his bili-shades, first pair of socks, and his first 2 onesies he got to wear.

Unfortunately, he didn't eat any cake. He did taste his hands a few times, hopefully next year he will chow down on his cake!

Checking out some of his birthday gifts

All the babies playing

It is so hard to believe that first year is over! It has been the most trying, emotional, and rewarding year of our life. We pray for each year to become easier and easier for Connor and his health. Once again, we want to thank everyone that has been so supportive during this past year. Connor is one lucky little boy to have so many people caring and praying for him.

Birthday Around the Corner!

Well, it's been a while since I have last updated! The month of March has been super busy and is flying by entirely too fast!!

We are gearing up for Connor's first birthday party, it will be rather small... mainly family with a few friends this year. Next year, we can hopefully do a big shin-dig. I am hopeful that we can live a normal life, not isolated away from people this summer. :)

I have been reliving our life almost a year ago. I remember the bed rest for 3 days with the constant fear of my baby not surviving being born at 28 weeks. I remember the first cry I heard as soon as he was born and then rushed to the NICU. I remember it killing me not being able to meet Connor until Saturday night when he was born Friday morning. I remember all the emotions of seeing my sweet man at 1lb 8oz for the very first time. I remember the absolute exhaustion of going back and forth to the NICU twice daily. I remember the amazing day that Connor was able to come home with us 3 months later. I remember the amazing support and prayers from all of our family and friends, even people we had never met. I remember everything, as if it were yesterday.

I thank God everyday for this amazing miracle that he has blessed us with. The journey to get pregnant and Connor's first year of life has been rough but completely worth it, and I would do it all again for our little man! I would like to share a few photos from his first few days of life and from his birthday shoot last week.

2 days old- The first time I got to hold his hand. If you look closely, Josh's wedding band is on his arm.

3 days old, resting on his side

7 days old- the first time ever being held. We placed Connor on my chest (kangaroo care) for body heat & to hear my heartbeat

A YEAR LATER: God surely does some amazing things!

Life is good

And here we are, March 1st!
I can't believe how fast this year has been flying, 24 more days and little Connor will be a year old! I don't even want to think about that quite yet, happy but sad at the same time.

Connor's eating habits are SLOWLY starting to improve. While we are still waiting to hear back from our insurance company on going to Marcus, we continue to work on this issue. After discovering last Thursday that Connor had bilateral ear infections (ouch!), he seems to be a little more eager in the eating department. He still refuses any and ALL formula. His new found love is water from a water bottle, he loves to squeeze it. This seems to usually result in a bath from the bottle, he will swallow a little. I have started making homemade baby food, I mean have you tried some of that jarred stuff?! This way I can make it any consistency and it tastes & smells 100% better. I am able to get food in his mouth, not eagerly, and he typically swallows it. I do wonder if I will ever have that "baby bird" that just opens wide! Hopefully things will continue to get better. My prayer is that we can work through this without requiring any extra therapies...only time will tell :)

Today has been such a beautiful day! Connor had a photo shoot with Cynthia Pace. Every year she does a Angels & Sweethearts Calendar, that goes to the March of Dimes. So, Connor is going to be in the contest and had his pics taken today for the contest. In April, she will post all the "angels" on her blog and there will be a voting session to see who will be in the calendar. I would love to see him in the calendar, but most importantly I love everything this photographer does for March of Dimes. She was simply amazing with Connor, I have not seen him cackle that hard in a long time! I will post the link for the voting once it is available, I am hopeful that we can get several votes :)

WENT FOR A WALK ON THIS BEAUTIFUL, 80 DEGREE DAY!

Connor has recently discovered that he can start to move about all by himself! OH NO! Our house is far from baby proofed yet!! He hasn't quite mastered down the crawl, but he is scooting backwards while on all 4's. He still refuses to roll from his back to tummy, but he has managed to wiggle himself around the floor. I believe within a couple more weeks, we will have a wild man all over our house!!

I PLACED C IN THE MIDDLE OF THIS BLANKET, LEFT THE ROOM FOR A QUICK MINUTE & WHEN I CAME BACK THIS IS WHERE I FOUND HIM!

WIGGLED HIS WAY UNDER THE COFFEE TABLE

Packing on the weight!

Wt: 16lbs!!!

A week after the Nissen, Connor had his bi-weekly weight check at his pediatrician. So last Thursday, he weighed 15lbs 9oz! He was last weighed a week before the nissen and he was 14lbs 9oz, so that's a great gain!! Yesterday at his surgeon's follow up appointment, he weighed 16 pounds! FINALLY, we are out of the 14's...it only took forever! The weight gain makes Josh and I believe me made the right decision to have the nissen done.



As far as eating by mouth, that continues to be a huge struggle. I believe I am keeping all of the sippy cup companies in business. We have so many bottles and sippy cups in our house, it's crazy! The only way we can get a spoon in his mouth is if we "sneak attack" when he is smiling or babbling. Sometimes he will swallow it, other times he will spit it right out. The sippy cup has become more of a teething toy, if formula comes out in his mouth he typically spits it out as well. It is the most frustrating thing because I know he is capable of doing it but he refuses to.

Chewing on a teething biscuit

Now that he has been cleared from his surgeon, we are in the process of getting everything lined up for the evaluation in Atlanta at Marcus Center. I spoke with his pediatrician's office today and they are sending a letter to the insurance company to see if this will be authorized. We held off on this process because we wanted him to be healed & ready to go if the approval was given. We are praying to hear good news from the insurance company.

Playing after a bath

Quick visit with Kennedy-NICU friend