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.