Halloween 2

Halloween 1

We pray everyone is doing well!! Jaymie just recently finished her first nine weeks of school and I have been busy at work as usual. Connor always seems to have a smile on his face and is a ton of fun to tickle. He really enjoyed Halloween. We hope you enjoy the pictures.

At our last weekly doctor's visit, he weighted in at 18 lbs. 15 oz. Overall, the visit went good; however, they have recently put him on a second blood pressure medicine since the first one does not seem to be having the effect they wanted. So, we will continue to take it a day at a time.

We will be going to Arkansas Children's Hospital on November 9th for his hypertension and cardiology clinics. The hypertension clinic will determine if he has any damage to his kidneys. This check is routine for high blood pressure kids. The high blood pressure and the medicine he is on can have an adverse effect. The cardiology clinic is a follow-up to ensure the coarctation of the aorta has not returned and that everything appears to be functioning as intended with the exception of the blood preassure.

Jaymie and I are excited for the holidays!! We are looking forward to seeing some family, friends, and taking some time for leisure vs. doctor visits. We can not tell you how much we have appreciated everyone's support over the past 7 months. Yes....Connor will be 7 months old tomorrow. Time sure flys by when you have kids. Take care and we will keep you posted on the results.

~Casey, Jaymie, and Connor

First Trip to the Pumpkin Patch!

We enjoyed a beautiful day today and took Connor to the pumpkin patch here in Centerton. It was probably more fun for Casey and I then it was for him but I think he did enjoy it! Below are some pictures of our trip!!

Also, Connor turned 6 months old on October 2nd! He is definitely getting big and we are loving watching him change everyday! He is Mr. Personality lately which is funny! He has learned and is practicing sitting by himself! We still have weekly doctors visits to monitor his blood pressure and he is trying to get over a case of thrush but other than that he is doing great!

He also started daycare in August and we definitely lucked out. One of my students' mom from last year is watching him and she is absolutely great for him! He is the only child so that makes us feel better about not being with him!

Health

Well, I thought maybe I could get away without posting something about little man's health but that's not the case..........hopefully someday!!! Connor continues to gain weight and is doing well managing his reflux with his meds ~ last appointment he weighed 13.9lbs! His blood pressure is still a struggle for us. We started noticing orange urine in Connor's diapers and when we told the doctor they were concerned that his bp meds were effecting his kidneys. They stopped his bp meds and we went to the doctor just about everyday to have his pressure monitored. After about a week and his blood pressure continually getting higher they decided to put him on a different medicine that hopefully won't effect his kidneys. This medicine isn't generally used on babies but it's our only choice at this point in time. We go to the doctor tomorrow for a follow up so we will see how things are. He continues to need your prayers!

First Swim!!!

During our trip to Kansas my mom and I took Connor to visit his Great Grandparents and extended family in Downs, KS. While we were there Connor went for his first swim! He absolutely loved it! We used his cousin Will's floaty and he floated around and kicked his legs like crazy! Hopefully he continues to be a little water bug!

Baptism

Connor was baptized on June 27th in Hays. We were lucky enough to be able to do it at St. Mary's church in Hays so our friends and family could be there. We were also blessed to have both of Connor's godparents, Katie and Stuart, there to be a part of the baptism. The baptism was followed by a great bbq with friends and family at my parents house! They really worked hard to make the party fun and it was!!!

Trip to Kansas

Connor made his first official trip to Kansas this summer! The car ride was a bit tough for him but we broke it up for him and he made through! We really enjoyed spending time with friends and family and loved having Connor meet some of them for the first time! Here are a couple of pictures from our trip!

More 2 month pics!

New Pictures!!

Just a couple of new pictures of Connor! Connor and daddy enjoyed an evening outside and took some good pictures! The bottom one is a photo shoot with mommy, can you tell I was bored?!? Connor is doing well and getting so big! He goes to the doctor Friday for his usual blood pressure and weight check plus his 2 month check up!

2 months old!

Connor is 2 months old! He is getting so big, at his last appointment he weighed 10 lbs 5 ounces and was just over 21 inches long! He has been pretty happy lately and loves to "talk"!

This is a picture of Connor getting his chest x-ray on Friday! It's a plastic tube they tape him in with his arms over his head. He totally hates it and it is very sad to watch!
Connor had a good report from the cardiologist on Friday! She said everything is healing nicely and his chest x-ray looked good. She lowered his blood pressure medicine because that was looking good too. He was also put on another reflux medicine because he is still irritable and has been vomitting more, hopefully this will do the trick!
We won't see the cardiologist again until August but will continue to have frequent blood pressure and weight checks with our pediatrician.
At 8 weeks old Connor weighed 10lbs and was just over 21 inches long!

Home Update

Well, we have been home a week and what a week it has been! Connor came home a very grumpy boy so we have been trying to figure out what is going on and TRYING to keep him calm so his blood pressure doesn't go up. We had a pediatrician appointment today and will go back again on Tuesday followed by a Friday appointment at the Children's Hospital in Little Rock. The doctor said today that before he can diagnose him as colic he has to try changing his formula. So he is now on a soy formula - WE ARE PRAYING THIS WORKS!!!! It is hard to see him so unhappy and hard for us too. He now weighs 9lbs which is good but the doctor said he is still too scrawny. His blood pressure was also too high so he doubled his medication. That's the latest news, we go back on Tuesday and will update you more then!
PS - These pictures are of his happy times which we love!

Day 12 - EXIT!!!!!

We are home!!! WAHOOOO!! The doctors decided Connor had come a long way in 12 days and was ready to go home! He will be on blood pressure medicine and will have frequent doctors appointments but we are happy he is doing well and we are home! I will post some pictures tomorrow but we are exhausted! Thanks again for all of your thoughts and prayers!

Day 10......

So, Day 10. Connor seems to be doing well although he is tolerating the hospital situation less and less each day. I feel bad for him and wish we could just take him home already. He had a chest xray today which is the saddest thing to watch because they literally stick him in a clear tube with his feet dangling and his arms raised above his head! He screams and screams and screams throughout the entire process!

We know the end of our stay is near but don't know an exact date. Still waiting on the blood pressure issue to be resolved. Casey and I are hanging in there but realized today how frustrating this is for all of us. We are not as happy with the staff in the step down as we were with the staff in the ICU so that makes it even harder. We are ready to go home whenever little man is ready!!

Day 9

Connor is out of the ICU!! He is now in the step down unit, the stage before going home! He is off all IV meds and now only has to be monitored every four hours. He is also allowed to eat as much as he wants which is currently 4 ounces - he is going to be a big boy with 4 ounces of rice formula! Hopefully we can get on a schedule of some sort before we go home. We will be very excited to take him home! While in step down we have to/get to stay in the hospital at all times with him, at least one of us. That means we have the pleasure of sleeping in a chair with the neighbor baby and their parents - fun times. More pictures tomorrow....

Day 8 pics

Just a few pictures from today. Not much has changed which is good. He is ready to leave the ICU whenever there is a bed available in step down for him. He is loving the new rice formula and seems to sound less gurgley when eating. He also remembers that he loves to be held and we are loving holding him!

Day 7

A lot changes in one day! Connor was a busy boy today with all of his tests and thankfully all of the tests brought good news!
He had a swallow study done where they try different consistencies of formula and see if any cause him to aspirate. He never aspirated but showed signs that it was very possible with the regular formula. They now have him on formula with rice cereal (like you would give an older baby), hopefully this will help that problem.
An Ear Nose and Throat specialist came and did a check of his vocal chords to make sure they were not paralyzed during the surgery or injured at all. He did this by sticking a camera up his nose into his throat - imagine how much he liked this!!! Anyway, everything is fine just swollen from having the ventilator for 4 days.
His nurse noticed his hands and feet were a little blotchy or dusky so she ordered an Echo cardiogram to make sure blood was circulating everywhere and it is! The doctor said his heart looks good, the aorta seems to be healing nicely and not showing signs of narrowing again. He does have a small hole between his atriums but that should close with time and is common with babies.
He also got his arterial line taken out of his wrist and is off all IV medications! He will most likely be leaving the ICU tomorrow and going to step down where we take care of him and he is monitored every 4 hours instead of constantly.
Lots of changes today! We just pray that it continues and are not getting our hopes up just yet!

Day 6

Well, not much has changed today. He definitely looks better and finally looks like our baby again which is great to see. We both got to hold him to feed him which was also great and something we have been needing.

His nurse noticed this afternoon that he sounds gragely when he eats which is a concern because the vocal cords could have been damaged during surgery. They went ahead and put his feeding tube back in and will do a swallow study tomorrow to see if anything was damaged and to what degree. We would rather them take the precaution then have him aspirate.

They are also still having a hard time keeping his blood pressure under 100. I guess this is just a trial and error process that takes some time. We are trying to be patient but wish it wasn't so complicated.

Day 4

Connor's ventilator was taken out today!! His lungs still have quite a bit of fluid in them but he was no longer tolerating the ventilator so they thought it was time for it to go. They have increased his respitory treatments and medicines to help. He is still having trouble with his blood pressure but hopefully that can be controlled with the right combonation of medication. We still can't hold him but maybe within the next couple of days. Still praying for a smooth recovery.

Day 3 - One month birthday!

Connor continues to improve each day, although not by leaps and bounds, the small steps count too! Yesterday his chest tube was taken out and a feeding tube was added so that was all great to hear! He still has his ventilator because xrays of his lungs show that he has too much fluid built up. They have increased some of his medications and breathing treatments to try and get the fluid out. The swelling has gone down around his face and he is more alert.

Connor also turned one month old on May 2nd! Not a great way to celebrate but hopefully things will continue to improve and by his 2 month birthday everything will be much better!!

Connor's Heart Surgery

Well, it's been a very, very rough couple of days but he seems to be doing well. His nurses and doctors say he is doing very well so we are hopeful that this continues. They are going to try and take him off the ventilator today so we hope this goes well. He had to have a blood transfusion last night and was put on blood pressure medicine but both are to be expected with baby heart patients. We will continue to update you as we know more.

First Bath!!

Here are a couple of pictures from Connor's first bath! He did a great job and was patient with us as we tried to figure it out!

Our First Two Weeks at Home

Our first two weeks home have flown by! They have definitely been an adjustment for all of us but seem to be going pretty well. The first week he was an excellent sleeper but has progressively strayed away from that............some day we will sleep again!! Casey went back to work Monday and is exhausted and missing being home.
Our first appointment with the pediatrician went well last week. He did put him back on his reflux meds so hopefully that will solve a few issues! We go back next week for another check with him. On Wednesday we have our first appointment with the cardiologist at the Children's Hospital in Little Rock. We have no idea what to expect but are praying for good news! We will keep you updated and post more pictures soon!

Happy Easter!!!

Happy Easter!!! Connor is scheduled to come home tomorrow if everything goes as planned! We are excited and nervous and excited!!!!!!!!!! Praying that things go well.

Connor has had a great couple of days! He has been taken off of his feeding tube and oxygen and seems to be doing well without both. He is also allowed to eat as much as he wants and loves it! We are thankful he is getting better by the day and can't wait for him to come home when he's ready!