Rollin' Rollin' Rollin'

 Keep those doggies rollin' rawhide!!!  Guess who rolled over today for the 1st time!!  Well, he rolled the 1st time and I ran to grab my phone to video his 2nd roll!  So exciting!

He's been doing better with eating.  It's just a process.  Feeding therapy starts tomorrow.  We went to his 6 month developmental follow up last week and he's right where he should be for his adjusted age!  We went today for his first OT appt. at OCH Baylor.  She showed me some neck stretches to be doing.  Chance has a flat spot on his back right side of his head.  We've tried positioning but it hasn't helped.  I went ahead and made an appointment with Cranial Technologies to have his head evaluated.  He may have to wear a DOC band for a while to shape his head.  Never a dull moment in our world!

BTW- Chance will be feeding tube free for 3 weeks tomorrow!   

I forgot to say when I made this earlier that Chance has really discovered his hands this week.  He's been sucking on his hands like crazy.  He's also been taking his lovey toys and going to town with them!  Feeding him has become even more a challenge because he's wanting to help hold the bottle aka knocking it out of his mouth!!

My BFF Andrea and her daughter Gwendolyn came to see Chance!

 

Need some uplifting prayer today

Today's one is those days where I just can't shake this overwhelming sadness. Chance hasn't eaten well the last few days. He will take 1 oz happily at a time and then pretty much refuse the rest. It's literally a battle to get him to take more. I hate that I base my feelings on how well Chance eats but I just can't help myself. I've been praying all day.  My heart is so heavy. He was doing so good and now has regressed. Praying therapy will help next week. It can't continue like this. I'm so sad that the gtube might have to come into fruition. 

2 weeks feeding tube free!

I finally heard back from Baylor's OCH (our children's house) and got his feeding and OT therapy scheduled. I'm excited for him to start feeding therapy. We start both therapies next week. 

He's been officially feeding tube free for 2 weeks now. He was 10 lbs 8oz on 5-7-13 and is now 11 lb 9oz as of last night, 5-21-13. So, we will see how his weight trends by himself. It's still stressful on me worrying that's he not getting enough and praying he gets close to his  daily goal. He just won't sit there and take 2-3 oz in 30 min. He just won't. The most he'll take at a time is 2.5 oz at the most and that's with breaks built in within the 30 min. It's ok. It's just going to take time. Then, I'm already thinking like... Well he's gaining weight but he's not taking more volume so what does that mean?!?  Ugh, the worrying!

But, let me tell you, Chance sure is growing and getting stronger. We do lots of rolling over and tummy time practice. This week when he's on his tummy I will help get his arms in position and he's able to keep them there and lift his head for quite a bit!  He couldn't do this just last week!  It's amazing the progress he's made in just 1 week. Even his OT at home therapist was like wow!!   He's really started playing with hands and touching objects more too. Not really grasping things too much yet but just a little. He loves his little soft lovey pets. He likes to hug them close and put them in his mouth. 

He continues to melt my heart every second of the day. He's talking a lot now and smiling and laughing like crazy.  The most heart warming smiles are those I get at around 2-5 am when I change and feed him!  He is def not a morning person which is opposite of me!  We're always saying what a wonderful, content baby he is. He's am awesome night sleeper too!  Sleeping 3.5-5 hours at a time.  It's sweet to watch Joc and him together. Joc loves his little boy so much. 

Happy 6 months big boy!

We can not believe our beautiful boy has been here half a year (2.5 adjusted) already.  Crazy!  Today was a special day for all of us.  Chance got to meet his grand grandpa- Pop Pop for the 1st time!  Chance is still feeding tube free!  It's been 1 week 4 days.  He's doing ok.  I mean I guess for having to take all his feeds himself for the first time in his life, he's doing pretty well.  I should hear back from Our Children's House this week hopefully tomorrow about scheduling for feeding therapy.  He will def benefit from some therapy.  Other than that, life is pretty good!

Chance is showing off in this little video clip.  He smiles AND laughs!!  There's no sound sweeter in this world than his sweet little laugh.

Here's a video of Pop Pop holding Chance.  He just loved meeting Chance.  He was singing to him and telling him stories.  It's not everyday that you get to meet your great grandpa/grandson!  So special!!  Cousin Kylie got to hold C for the 1st time too!

Feeding tube free 1 week

I'm still amazed that Chance has been tube free for 1 week today!!  He's really doing great with his feedings. Yesterday we tried feeding smaller amounts more frequently and he actually took more ounces doing it that way. We were only 4 mls away from his daily intake goal!!  I'm going to give you a little glimpse of what I use to track his feedings. Yes, I'm a little crazy and I've been tracking every single ml, yes every single last ml since he came home on March 27. Can you believe it's been a month and a half since he's been home!?!?  Ive since switched Chance over to all formula. Sadly, I quit pumping. I just wasn't getting enough to keep up with it. But, since switching him over, it's done a number on his little system.  I won't go into too much poop detail but he hasn't gone by himself in 7 days. He HAS gone a few times with the help of dear mama!  I've tried a number of things. Now, I'm praying for him to poop on his own. Lol, hey no prayer is too much for our Lord right!?  Anyways, his pedi isn't concerned but gosh I sure am. I just put in a call to his GI doc to get another opinion and some more suggestions.  

So, now you have a new specific prayer request!  

We have a pulmonology appointment today. I called to check on his status with his Our Children's House eval and they said its been sent to insurance and I should hear from scheduling in a week. 

Feeding tube free & C's feeding mystery

We have been feeding tube free for 3 days now!  Heard back from Chance’s pulmonologist regarding his overnight sleep study and he sated above 90, 80% of the time. It’s ok but not ideal so they said they’ll do another sleep study in 1 month.  I kind of figured as much.  We will continue to take him off o2 2x a day for a few hours.
Can I just say Jesus’ timing is impeccable?
Ecclesiastes 3:1
For everything there is a season, and a time for every matter under heaven.
As you know, we’ve been struggling very badly with Chance’s lack of eating.  No matter what I tried, he just didn’t really want to eat.  I did a lot of experimenting over the weekend and narrowed it down: Chance did NOT like the frozen breast milk which I was thawing.  The fresh bm I pumped he would drink happily.  So, I was like huh?!?!  For whatever reason, I texted my primary nurse from Children’s and was explaining our struggle.  She said that there’s an enzyme in breast milk called Lipase.  Well, when you freeze bm and then thaw it, if you have a high count of Lipase, it alters the taste and smell of the milk.  It can make it taste sour and almost rancid smelling.  I’ve smelled it and just thought that was how it was supposed to smell.  WELL, GUESS NOT!!!!  If you pump it and heat it to a scald before freezing it, it helps eliminate that.  But, I’m barley pumping enough as it is now.  My supply has dwindled to pretty much 0. 
So… this was this past Saturday that I narrowed it down and Sunday when I spoke with Chance’s primary nurse.  Then, from Sunday afternoon on, I’ve given him freshly pumped bm and formula only.  Let me tell you, I’ve been introduced to a whole new baby.  He’s not choking, gagging, or refusing to eat.  He takes his feeds very happily and can even use a level 1 nipple!  We were using a preemie nipple because he was choking on the level 1.  I described it when he swallowed like it was as if it burned when it went down.  Now I know it was a face of disgust!  I mean, who wants to eat something that doesn’t taste good?  Not I! 
Anyways, I say Jesus’ timing is spot on because this was the week I was planning to schedule his gbutton surgery.  He pulled his own tube Monday night before his 9 pm feed.  He’s been taking full feeds every single bottle with the exception of the early morning feed when he’s just tired but still taking more than half!  I just can’t believe it.  It’s almost too simple to be the answer to the puzzle. All this time, ALL THIS STINKING TIME, all the stress, anxiety, discomfort, and everything else you could imagine...it was the taste he didn't like!  

I'm still all freaked out almost every feed just cheering and praying him on to take the full feed.  I don't really know when that feeling will pass??

 Uncle Randy

1st official nap in his big boy bed!

Feeding evaluation

It went ok. Wow, it was a lot of info. Thanks again Lisa for coming with us!!! We met with a dietician, slp (feeding), and ot. Once he begins therapy I'm going to have him get pt evaluated. SLP gave some suggestions and another thickening agent to try. Basically it's just going to be a lot of communication as far as what works and doesn't between myself and the therapist. That and therapy and time. TIME... Chance is in the 25% percentile for weight and length for his adjusted age. Like many medical professionals tell us, he's doing amazingly well for a 25 weeker. I know we are blessed but things could still be better with feeds. We are as ready as we'll ever be to begin the gbutton process. Please pray that's the answer needed for his feeds to take off.

I needed this reminder

God's timing is perfect. But, isn't waiting the hardest thing to do!?? I struggle daily with Chance's eating. And how selfish of me to say I struggle when I know I know my baby is trying his hardest and just trying to protect himself. Anyways, I read this and it hit home.

The consultation with the pediatric surgeon went well today. We have a clear picture of what the gbutton surgery would entail if we choose that route. We're waiting on the results if his feeding eval and then will discuss with his lung doc to make a decision.

Please continue to pray that in God's perfect timing, Chance will eat like his dad. Lol!