Wednesday, February 27, 2013

100th NICU day

If you're a teacher or know a teacher, the 100th day of school is a big deal! Today is our 100th NICU day :-/ Not as much of a fun celebration but a testimony of God's work in progress with Chance's life.

As you've read, were strictly waiting (impatiently- Lord, plz help me with that) on Chance to take full feeds with no tube feeds in 30 min with no Brady's or desats. Gosh, that's like having to pass the Bar exam!!! Once he can successfully and consistently do that, we'll be saying sayonara to the NICU!

Now for the good news of the day... Chance did take a full bottle with no tube feed 1 time today!!! He's been only taking partial and tubed the rest. He's really learning to pace himself more. Yay Chance!!!!!!! You go buddy. I give him pep talks each feed I do. It's really hard work and he sure puts forth 110% effort.

Please continue to pray for Chance to take full feeds through bottle within the allotted time with no dips in heart rate or oxygen level. And for us to go home near or **on** his due date 3-4-13 without oxygen support. Our Lord says to be specific in our prayers so there it is!!!!!

Here's a link to a cute video I took the other day. He is passed out in this photo. The full feed he did at 3 knocked him out. He wouldn't budge when I came for the 6 feed.
http://www.youtube.com/watch?v=Dr_Id_6ObFA

Monday, February 25, 2013

39 weeks

Next Monday will be Chance's original due date. I would prob be monstrous right about now. It makes me very sad thinking about the what ifs. I know it's a waste of time and emotions but those thoughts are always there. I think even more so lately because we're nearing the date.

I'm sitting here watching him enjoy sitting in his bouncer. He's such a cute boy. He's down to .1 liter on his breathing flow. They'll start attempting to wean his o2 shortly. Learning to bottle is slow progress. That is definitely our biggest prayer right now.

Lots of first holds these last couple says. Jocque's mom, dad, and sister.









Sunday, February 24, 2013

1st full bottle feed

Rejoice in the Lord always: and again I say, Rejoice. Phil 4:4

I feel like shouting from the top of a mountain I'm so excited. Chance's night nurse texted me around 1 am and said he'd taken ALL of his bottle. It took him 30 min and some Brady's (heart rate drops) but he did it!!! He's dropping his heart rate because he's forgetting to breath while sucking and swallowing. I was so excited I was up from around 3:30 when I got the text and called to hear the glorious details for myself to around 5:30. Just laying in my bed listening and praying to God. He immediately brought Phil 4:4 into my mind that this is def something to rejoice about. But, also to rejoice in the hard times. Notice it says always, not just in the happy times. I've been very frustrated and impatient these past few days. Chance has been struggling to learn his feeds and we are so close to home. One of my fav day nurses, Megan, spoke with a another nurse yesterday and relayed what they discussed. It made me feel so much better. Babies start to nipple around 33-34 weeks old unless there's other issues going on. Chances breathing wouldn't allow him to get to a low enough breathing flow on his cpap to begin nippling until he was later 37 weeks. So, Chance was like 5 weeks behind on practicing and learning to nipple so he's doing exactly what he should be doing. Especially after all he's been through. Chance is my biggest hero. He's such a sweet and happy baby. Seems laid back...Hope that continues.

Another verse that The Lord brought to me this morning:
Psalm 40:2

He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock
and gave me a firm place to stand.

Nana got to hold last night for the first time too! Plus, Chance got visits from my BFF Andrea and Amber who came all the way from Houston!! Chance can't wait to use all his stuff :-)



















Thursday, February 21, 2013

38.4 weeks old

OT came and worked with us on bottling today. She showed me how lay him sidelined and really pace him. Like literally after every suck or two to tilt the bottle up and give him a chance to swallow and breath. He did very well with that strategy and seemed happy and enjoyed it. He got the hang after a bit and did awesome at pacing himself!
He's going to have his cpap weaned to .5 liters tomorrow.



Wednesday, February 20, 2013

Maverick the Graduate!

Getting our buddy ready for Big Brotherhood!



3 months old

Chance turned 3 months yesterday! His breathing cpap was weaned down yesterday too. He's been doing great with the wean so far! He's scheduled for another eye exam here shortly so prayerfully his eyes haven't worsened. Gramma Jen Jen got to hold him for the first time plus help with his bath!





Monday, February 18, 2013

13 weeks old- 38 weeks adjusted

Two more weeks until Chance's birthday date. He's come so far! He grew 1 whole in from last week to this week. He's 18.25 inches long and 6 lbs. 2.9 oz. nothing new. Still trying to wean oxygen and working on nursing and taking bottles. I finally feel like we're nearing out NICU stay countdown! Prayer request: continued healing of his lungs. And the "light bulb" to go off so he can start taking full feeds through nursing and bottles.

Thanks!!!







Sunday, February 17, 2013

Baby shower

I was beyond blessed yesterday with such a beautiful shower. Thank you Allison and Debra for hosting and Annie and Lauren for cooking and prepping! Chance was showered with gifts. He sure is one well loved little fella ;-) Now the organizing and putting away begins!! The nursery is coming closer to completion. I still haven't completely finished putting up the tree decal. The tree part is up but it came with grass pieces, a zebra, and a giraffe that I still have to find a place for. Plus, we're having a friend sand and paint this perfect corner shelf. Almost!!

Here's a few pics from my camera. I'll post more as I get them.

By the way, Chance took all by 5 mls from his bottle lady night with his dad!! Joc loves holding and feeding him. It melts my heart <3333.

He is officially 6 pounds!!!!!











Friday, February 15, 2013

First bottle

Joc gave Chance his first bottle last night and he took about half! What a champ! Still practicing nursing. Things are different here at Lewisville but were getting used to it. He's now 5 lbs 12 oz and just about out of preemie clothes!





Wednesday, February 13, 2013

Back at Lewisville

We transferred today instead of Friday. It's very bittersweet. I was sad to say goodbye to the awesome team who cared for Chance for the last 79 days. Thanks to everyone at Children's... i snapped a few pics today of some of Chance's favs. Monika his primary nurse and Morgan and Lauren two of his RT's.

But, were back now at Lewisville to finish where we started! We have our own room which was a nice surprise. I didn't realize they even had those when we were first there.











Tuesday, February 12, 2013

Back to Lewisville & 1st Latch!!

After much debate, speaking to doctors and nurse practitioners, and personal talks with God, I'm finally at peace with moving back to the Lewisville NICU.  We will be moving on Friday.  It's bittersweet.  We can finish where we started.  I remember when we first started out at Lewisville, I would see BIG babies in their BIG crib beds and wonder if Chance will ever be that big.  Well, HE IS!!  God is so good and is at work so much in our lives.  

Today was a huge mom day for me.  Chance latched on and went to town for a good 5-6 minutes!!!  It felt so good and rewarding to do something "normal."  They weaned his Vaportherm to 2 liters of flow from 4 so we'll see how it goes.  

Chance had a MRI yesterday. The results came today, no abnormal formations and his brain looks as it should.  Yay!!!!!  

On my way to the MRI


Gosh, I'm so stinking cute!


So in <3

Sunday, February 10, 2013

Almost 37 weeks- Vapotherm & transfer scare!

Chance is trying out Vaportherm! It's basically a step down from cpap. It's heated and humidified. He's doing great so far! He's due for a MRI rapid scan tomorrow if they can fit him in. During rounds today, the doctor that's been on for the past 2 weeks said after his MRI, he'll be transferred back to Lewisville. He has quite a thick accent and I was like, "wait, what did you just say?" Basically he sprang it on us like we'd been discussing and planning on this the entire time. Umm nope! Not only that but he didn't think it was necessary to possibly run that by us to see what we thought or would like to do. We've been there way too long and have developed relationships and primary nurses who know Chance and know how he ticks! Like a sweet friend said to me today, I don't have a crystal ball and unfortunately don't know what Chance will need/require before he's discharged. Small regional hospitals just don't have the specialists/staff/equipment right at hand like Children's does. And to top it all off, the last thing Chance needs is the stress of a transfer move. So I can't wait to speak to the Neo who is head of the unit tomorrow. Ugh. Makes me mad and sad and hopeful that the end is near all at the same time. I took a picture of Chance today that shows exactly how I feel about the situation but don't think it's appropriate for the whole world to see!