The ups and downs of learning the bottle and hopes of going home!



"See me in my scooter outfit?  And yes I can hold my paci!"

Yes, I like this picture of Cannon and Trent, but I also want to point out the picture hanging on his bed.  That is from big cousin Sydney and it says "Kennon is the best baby boy I ever saw in my hole intir life!"  So she spelled his name wrong (her mom will correct her one day, but we both decided we didn't have to heart to tell her now and she was pretty close since she guessed on her own how to spell it!)  And yes, I will show her little brother Carson this picture one day!  haha!  Too sweet!  Thank you Sydney for Cannon's picture...He has enjoyed it being in his crib!

He can hold the paci in his mouth, and looks like can knock it out of there on his own too!

Sound asleep on his daddy's chest!

Me and Cannon in the nicu!  I am so tired of having to scrub in and put on a gown to see my child!  Another thing to look forward to when we get to go home!

Poor guys!  Trent was going on about 28-29 hours of no sleep at the point I think!

This is the first outfit we bought for Cannon when we found out he was a boy!  I just thought I wanted a girl....Was I wrong or what!  I can't imagine my life without this little guy!  He's amazing!

Well, that's all I have for now!

Love,

Christian

Figuring out the bottle has been a little bit of a challenge for Cannon. We knew it would be, but were still hopeful that he'd just take right to it. Now it seems by my last post that I've told a little bit of a story because I said he was doing great with the bottle. That's true and untrue so let me explain. It is true that he was doing great with his bottle at the time I wrote that blog. He was getting very small amounts and he had just started on the bottle and had only had surgery 7 days before his first bottle. So yes, considering all of that we thought he was doing great! However, a few days into it he just was not really wanting to take the bottle, he was gagging on the milk, and would freak out everytime milk went into his mouth. His latch onto the bottle was great and he could suck on the bottle (because remember...he was great with his paci!) but when the milk would come out he would get this shocked look and start gagging and spit it all out. Poor little thing! So we finally had occupational therapy come in to work with him and see if they could figure out what was going on. Their idea was to lay him on his side! Call me dumb, but I never thought that laying a baby on his side to let him eat would make the milk flow slow down to where it wouldn't choke him! No wonder he was gagging....It was too fast! So we did that for a little while and he ate better, but still not the best. The drs. had us try a thickener to see if he needed a little more substance to make it go down easier and stay down since he has reflux, but he HATED that. He immediately spit up the little bit he took! After that incident on the next bottle it was like the light bulb came on! He was able to sit back up to eat and he suddenly had the suck, swallow, breathe of bottle feeding down! This "new great trick" of his started on Thursday. He has been doing amazing since then! I didn't want to get too excited over his first few successful bottles because I kept thinking he'd revert back or that it was just a fluke. But here we are on Sunday night and he's doing wonderful. Thursday was the first time he took his bottle great and then he started showing all the signs of really wanting to eat. He'd wake up crying and looking for his bottle. He'd latch on perfectly and a few times he's sucked down the whole bottle while I've been blabbing to his nurse before I even had the chance to stop him mid way through to burp him! It's been so exciting to see all these wonderful changes over the last few days! He went from not eating at all, to eating but fighting it and not really sure about it, to wanting to eat and getting upset that his bottle is done with and having to settle for his paci! Unfortunately for Trent the light bulb came on for Cannon right after Trent left to go back home for work this week! He has only been hearing how wonderful Cannon is doing! Cannon and I are ready for him to be back up this Thursday so Cannon can show his daddy how awesome he is at this feeding thing! He's still only taking 4-5 bottles a day. But before that we had to back him down from 3-4 bottles a day to only 2-3 a day. I was so disappointed because it was a step back, but it quickly turned around! He's also only taking about 27 mLs at a time and still getting feeds through his g tube! His regular dr. will be back from vacation tomorrow so I am very excited to see what he will have in mind to do next with Cannon as far as feeds go. They have been "scrunching" his g tube feeds this week to where he's getting it over a faster time period. It's hard to explain the scrunching thing, so I'm not even going to attempt b/c I don't want to run the risk of sounding like an idiot! haha! Anyways, maybe just maybe Dr. A. will decide to let Cannon try to take all bottles sometime this week and see if we can get him off these g tube feedings before we go home! Last week we just knew for sure he'd go home still taking feeds through his g tube and quite possibly having to do it with a pump! But he had this turn around so we have hopes of going home on all bottles! Come on Cannon show us how strong and amazing you are once again!!!!
NOW we are finally able to start talking about going home! Of course we haven't discussed it with Dr. A. yet because when he left for vacation Cannon wasn't doing so great on his bottles as he is now! But when he returns tomorrow he will see a totally different little boy! Now we are really believing we will get to take him home in the next couple of weeks! I am interested to see if Dr. A. will talk about going home when he gets back! HURRY UP MONDAY!! haha! Trent and I are already having that bittersweet feeling of what going home means. We are more than excited to bring our sweet baby home and start showing him off (a little at a time!)....but we are going to miss the little ACH family we have acquired! We love all of his primary nurses like family (and we look at them like family now b/c we spend so much time with them that they probably get sick of us!), and his drs.! It will be hard to say bye to the nurses especially! Photos of them to come......
Maybe just maybe my next post will be written from our home! We will see!