Busy weekend...

What a busy weekend!  My parents were down most of the weekend and we threw a party yesterday for my brother and his fiancee.  It was a good time and Jack very much enjoyed himself!  It was his first big outing/party and he had a blast.  It was such a hot day overall, so for a little while I let him be a naked baby!  He LOVED it!  He was just talking and kicking his legs all day.  He definitely had a good time, especially after he cooled off. 

We've been working on the feeding thing lately and Jack has taken a half an ounce each day since Tuesday.  He fights it for awhile and then settles down in to eat a little.  His tongue seems to be getting in the way, so I'm not sure what that means but I think he's working his way towards foods.  We found out on friday that at 3 weeks post-op, they'll be moving his feeding tube up into his belly which will hopefully give him more of a hunger sensation and help with the feeding stuff! 

Ahh...feeding...

How do you get a kid to eat when he hasn't eaten anything by mouth in about 2 months?  I wish I knew because I've been asking myself that question alot lately!  We are having a difficult time getting Jack to start eating again.  I'm honestly not sure what to do.  We are on a schedule now where he gets 6 hours off his feedings, so he should be hungry and want to eat.  He doesn't.  This is such a trying, stressful time.  I think this is more stressful then waiting for surgery.  He pulled his feeding tube out on Tuesday and we thought he pulled it out again today - so 2 trips to the ER this week...yikes!  Normally when he'd pull something out then it was time to move on to the next level, well it just doesn't work that way this time.  I know he might think he's done with the feeding tube but until he starts eating again, we can't take it out.  So I return to my initial question - how do I get him to eat?

Yuck!

So, summer seems to have finally hit Indiana and go figure, I'm sick!  :(  One of my days off and I can't snuggle with my Jack because I don't want to get him sick.  Yuck!  He's such a happy baby this morning, so I'm letting him relax on his boppy next to me on the couch right now and hopefully he'll take a nap at some point because I need a nap also! 

We are still working on the feeding thing and he'll play with the bottle but hasn't really taken anything.  We're trying to work up to 6 hours off on the continuous feed to hopefully make him hungry!  We'll see!  Maybe he'll even move on to foods rather than a bottle, we don't really know...as I've always said, it's up to Jack - it's his world and we are living in it!

Another hurdle to overcome...

Jack's overcome lots of hurdles to get to where he is today and our life wouldn't be the same if we had it easy.  I am beyond thrilled to have Jack's cleft repaired and I had hoped he would jump right back into feeding like nothing was wrong...unfortunately that hasn't happened yet.  It seems as though Jack is having some trouble with wanting to take the bottle.  He is still receiving the continuous feeds, so a lack of hunger doesn't help the situation.  We have started working with speech therapy to get him interested in feeding again but also we have to give him some time.  He is only 4 days out from surgery and most likely, his throat is sor and he doesn't want to have to try and manage food along with extra secretions in that area.  Whichever way we want to look at it, it's basically one more hurdle for Jack to overcome.  He's been awesome so far and I know he can do this and I have complete and utter faith in him! 

Update...

Jack is doing fantastic - what a rock star!  He's been off his oxygen since Saturday morning and doing wonderful.  I hope we get to see pulmonology while we are here and get rid of the oxygen for good.  He's handled nights without any desats and really the only time it alarms is when the signal is bad.  Jack's doctors have said he came through surgery just great and looks wonderful also.  Hopefully they will advance his feeding tube to an NG tube so Jack can start getting something in his belly to get it used to food again.  Speech therapy came by this morning and we tried some feeding - it's going to be a slow process, we need to get him used to the nipple style again and actually be hungry to take food!  We are working on dipping the bottle nipple into milk so he remembers the taste and will hopefully take some food soon. 

Update...

Jack's doing wonderful!  We tried him off the oxygen overnight and he did fantastic - satting 97+ the whole night!  Woohoo!  Hopefully we are this much closer to getting off oxygen full time!  I am so proud of how good he's doing!  He's definitely been a rockstar coming out of surgery, next hurdle is starting feeds and hopefully we'll be able to give it a shot with speech therapy tomorrow! 

Surgery...

Today was the big day, upper GI scope and possible cleft repair.  We had been waiting to see how the redness and edema in Jack's throat looked before they confirmed the repair and thankfully it looked better than March, so the repair was done!  We are so happy they were able to repair it today.  Jack is a champ!  The upper GI scope looked good with no abnormalities or obvious signs of allergy or problems.  He's recovering nicely in the PICU right now.  His doctors said his lungs look great - much better than what they did in March and hopefully he'll be taking bottles shortly!  Jack was being extra cute before surgery and I snapped this picture of him in his gown!

They are thinking that Jack'll be off oxygen and his tube feedings by the time he goes home, which will be terrific.  He's going to see Speech to work on feeding and have a swallow study early next week.  Until then, we are spending the weekend in the hospital recovering. 

Hmm...pumping...

So, I think the time has come for me to be finished - pumping that is.  I started this for Jack the day after he was born and was very diligent about it until last month when I noticed the supply dwindling.  I went down to 1x/day around Jack's 6mo birthday and yesterday I decided to see what would happen if I didn't pump at all - I was only getting about 2oz/pumping, way different from earlier when it was more like 10oz/pumping.  After sitting here this morning for the last half hour, I'm realizing that it's time to quit.  This has been very important for me because Jack has never received anything but my milk - he has had a gut of steel because of it.  Once his surgery is over tomorrow and he starts eating again, we'll have all of March and April's milk for him to take, plus he'll be starting foods soon and I'm going to start making 1-2 of his feedings during the day be formula so he can get used to it and it won't be such a shock when the time comes to fully switch. 
I had a goal when I started this - make it 6 months - I've made it longer - almost 7, so I think I've done my job and hopefully it's been the best thing for Jack!

Tomorrow is the big day - I can't wait for him to be tube free and get to start eating again!  We have noticied him watching us eat and I think he's definitely interested and looking forward to eating again!! 
Keep us in your thoughts and hope for positive things tomorrow!! :)

Mother's Day...

I had my first mother's day this year and my wonderful sweet son borrowed his dad's credit card (very smart boy) and bought me this fantasic frame which has a plate with his name on it!  Once it is done and up on the wall I will take a picture and post it.  Jack and I went shopping for cards for him to give his grandma's - we did not play favorites and each grandma got the same card.  Jack told us he wanted to add his own special touch to the cards - so Dustin and I got a picture of Jack 'signing' their cards!

Dustin and Jack brought me lunch to work, I greatly enjoyed seeing my little guy during the day!!  Thankfully I got off work early because we got everything done we needed to! 

We saw Jack's PT today - we have some more things to work on this week - he's been using his extension to help him do things - like rolling over and some of his standing.  So we have to work on flexing his legs and extending his arms - that's our plan.  We are going to work on this before Jack goes into the hospital and do what we can while he's in there so we don't have much of a set back during this hospital stay.   I don't know how long he will be in after the cleft is repaired but it will at least be until he can learn to feed again and have a swallow study done to make sure his swallowing is fine.  We are looking forward to being tube free!!

Enjoying our day...

Jack and I took an opportunity to enjoy the nice sunny weather earlier today!  We sat out on the front porch swing and played with some of his toys.  He decided he needed to do some work on his laptop, so I caught this quick picture of him 'working'

Positive thinking...

This is my new plan - think positively.  I know many people have told me to do this for a long time...especially because I've always been one of the most pessimistic people around.  I've made a decision and I plan on sticking to it.  For myself, Dustin, and Jack, I'm going to look at the brighter side of things and not dwell on the negative or the what if's about something.  I'm starting with Jack's laryngeal cleft - as you know we are going in for an upper GI scope next friday, the plan is to fix his cleft at the same time (of course they have told us it is a possibility it will not be repaired due to swelling/redness in that region).  I am not going to worry about the possibility of it not being repaired and I know they will come out afterwards and tell us it has been repaired and we'll be in the hospital while he recovers and learns to eat again.  It will be fixed next friday and we'll be off the feeding pump and he'll be working towards off oxygen all the time.  I know he can do it and I know it will happen.  I'm done with dwelling on the what-if's - I have a VERY strong son who has made it through more than we will ever know and has done amazing with it all!!  He has become one of the smartest little 6 month olds I know (especially since he was 3months early!) Guess he get's his earliness from me!

This is my inspiration for my new outlook!  This adorable, wonderful, little miracle!!

Lazy Tuesday...

I love Tuesdays - it is one of the few days Jack and I get to spend the entire day hanging out together!  Normally the day is filled with some sort of doctor's appointment, but thankfully today wasn't!  We did have PT this morning and Jack was ready to go!  He showed off his awesome moves and how good he's getting!  He's definitely advanced for his adjusted age - we all knew that though! :)

Jack had a busy weekend!  Grandpa T and Grandma Nell came down on Friday - Jack, Dad and Grandpa T all hung out on Saturday while Grandma Nell and I went to a baby shower.  Sunday, Jack got to go see his other grandparents - Grandpa Fritz hasn't seen Jack in awhile!  Jack also got to meet all the horses at the ranch!  There was a new baby horse - he was much bigger than our Jack!

We have 10 days until we go in for Jack's upper GI scope - keep your fingers crossed that they will go ahead and fix his cleft then also!!