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

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.