Saturday, May 30, 2009

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!

Monday, May 18, 2009

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!

Monday, May 11, 2009

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!

Sunday, May 10, 2009

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!!

Friday, May 8, 2009

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....

Thursday, May 7, 2009

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!

Wednesday, May 6, 2009

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!

Tuesday, May 5, 2009

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.

Sunday, May 3, 2009

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!!

Saturday, May 2, 2009

Friday, May 1, 2009

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.