Coburn Kids

To the left is a new link called “Medical Glimpse of Caden” it’s a bit overwhelming when you read it but it’s a great tool for Daniel and I so that we can keep track of Caden and let other doctors know what he has and what he has overcome. It’s really not as bad as the list details.  

Caden’s feedings are getting worse though. We used to be able to consistently get over 60-70 ml’s in by bottle each feeding.  That number has now dwindled down to 30-50 ml’s. This weekend he was refusing the bottle completely on some feedings.  He hasn’t taken a full bottle in a number of days now. We are now going to be talking to his OT and pediatrician for maybe a referal to a GI (gastroenterologist). If Caden can’t increase his feedings then we are looking at another surgery for a permanent feeding tube directly into his stomach.  An NG tube is only meant for short-term use and we are now starting to push that mark.  I would not have said a few weeks ago that Caden has an oral aversion but I think the NG tube is becoming more and more of a problem. Not to mention the guilt and heartache having to restrain your child and get it down into their stomach and the skin irritation he has from all the tape.

Visits this week for Caden include his OT on Thursday and his Echo at Primary Children’s on Friday. Last week Caden visited with his Plastic Surgeon and had his nasal stints and Logan’s Bow removed. He’s a much happier baby and able to actually breathe now! His lip looks great though and he’s started to return to his smiley self again. Yesterday you couldn’t get him to stop smiling at you.

Caden is doing wonderful after his surgery.  He’s so uncomfortable though with the Logan’s Bow (metal wire that you see in the pic to the left) and the nasal stints are an absolute nightmare. They’re too small so we can’t suction him out and he gets so congested.  Add the NG tube there and he’s breathing out of 1 little nostril. He’s such a trooper though. He slept for nearly 3 days straight after his surgery. He was on morphine and some Tylenol w/ Codeine. Just as a refresher, Caden had his bilateral cleft lip repaired, a palate prosthesis pinned into the roof of his mouth, and a bilateral inguinal hernia repaired. Though Caden did desat to around 85% several times during that first night it was only because of congestion. His new lip looks awesome, Dr. Warnock did a great job. We had hoped that with the surgeries it would improve his feeding, and though it’s been just a week and we can feel a difference when he chews on the bottle nipple, he’s still only taking 1 full bottle a day and then the other times is 1/2 bottle, 1/2 NG tube.

Caden is up to 12lb. 2oz. now. Still nowhere near the lines on the growth chart but he’s doing nicely in that area. Without that NG tube I really doubt he’d be anywhere close to this. We are now wondering if Caden’s heart condition might be what’s prventing him from taking full bottle feeds. He gets very tired 1/2 way through and just doesn’t seem to have the energy to finish a bottle.  We have his Echo on Feb. 1st with Dr. Everrett (same one that did Adessa’s Echo!) and we’ll see if that might be a factor then. Another refresher… Caden has an AP Collateral with a L->R shunt and Left Atrial Enlargement. He might also have Hypertrophic cardiomyopathy or HCM but we’ll get all that confirmed on the 1st.

Caden has yet to get sick, my girls obsessive compulsion with hand sanitizing is paying off! To help us out with the surgery Grandma Coburn came out and stayed with us for 2 weeks.  What a blessing that was, to not have to worry about who could watch the girls when and that they could have some normalcy being able to stay with Grandma at our home.  I could tell it still really got to Gena though as she was quite emotional in the days following Caden’s surgery. I expected this though and she was a trooper.

Caden before surgery

Caden after surgery

Girls playing in the snow

Girls at the Kids Saftey Fair with butterflies painted on their faces

Girls with Grandma Coburn

Caden came home on Tuesday afternoon, he was asleep most of Tuesday and Wed because of his pain medications.  He is such a good baby doesn’t really cry at all except when mommy tries to clean out his nose.  On Thursday most of the swelling started to subside, and he looks so different and so good.  I’m going to miss his little face with his broken lip, it made  him unique and gave him an adorable smile.  But now I see a completely new and adorable child, he tries to smile still, but I seems to still hurt him a lot.  We’re hoping he’ll continue to recover quickly.  We are hopeful that his feeding tube won’t be necessary much longer, because he’s able to feed a lot stronger when he wants too.  We’ll see though, cause at 4am, it’s sorta a blessing

Just a quick note from Caden’s bed side. Caden has come through his 3.5 hours of surgery just fine and is truly showing what a great baby he is. Mommy is holding him now and he is not making a sound, no crying or fussing at all. He is unwilling to take his bottle right now, but that is understandable since he has a new lip and roof of his mouth. I will post more later on tonight once I can get some photos on the site.