Happy 10 months old!

Another month cuter!

 

Home and 15 pounds!

Everyone is super happy to be back home!  AND Me. Chance finally reached 15 pounds today. 

OCH feeding program discharge!

Tomorrow marks our 13th day of inpatient feeding at Our Children's House AND I'm happy to say we will be released tomorrow morning!  Chance has made amazing progress in the almost two weeks he's been here.  There's definitely been a lot of up and down emotions for myself but Chance has continued to make gains.  Below is a list showing just how good God has been to us since arriving here at the hospital.  Thank you for all your feeding prayers!

1. Chance came in weighing 14.5 pounds and his weight today was 14.9!
2. He passed his swallow study with flying colors ~ NO aspiration= no need for thickened feeds.
3. Chance has gone from nectar thick consistency to thin- normal formula.
4. With the help of two awesome therapists, we found a bottle and nipple flow (Dr. Brown, level 2) that Chance will eat from happily!
5. With the help of his wonderful OT therapist, Chance can now sit UNASSISTED for more than 5 minutes!!!  It's amazing how much strength he's gained working with her 3x a week and me carrying over the skills in between.  She also worked on his pincher and tri-pod grasps.  
6. As far as low muscle tone in his cheek/mouth area, with the bottle he's using, no chin or cheek support is needed.
7. No more fighting feeds- HuGe SuCcEsS!!!
8. Since going on a strict 3 hour feeding schedule, Chance is now showing hunger signs.  He's actually whinne and cryish around feeding times.  Some of you may think that's no big deal, but that's music to my ears that he's showing me he wants to eat.
9. Joc fed Chance today and they both did fabulous = hello 1:30 AM feed for Joc coming right up ;->

Now, I'm praying we can transition back to our house and not backtrack.  We have lots of follow up appointments coming up as well.  Seeing neurology this Wednesday.  Then, follow up with GI, pediatrician (for weight checks), and ENT.

One thing that has helped get me through this is knowing this too shall pass and this time is only temporary. 

OCH feeding care meeting

We met today with C's feeding therapist and dietician to discuss the plan. As of now, if C continues to gain weight, we could be discharged on Monday!!  He's made great progress!  He'll continue seeing a feeding therapist and OT privately. 

As we all pray to lose the lbs, plz pray C gains steadily!  

Swallow study results & Week 1 at OCH

Chance did so well in his study!  Thank you Jesus!!  He's not aspirating at all so were going to begin taking him off thickened feeds tomorrow morning ;-))  He was actually having fun, all smiling and loving the attention!

There is a little pooling in the back before swallowing but that's normal for his adjusted age (6 months). My heart is so happy it's smiling right now!  Thank you for all the prayers. We know by now they work!

I feel like Chance has made some great progress this week.  We found a nipple/bottle that he's taking really well and he's letting his therapist get inside his mouth to do oral motor exercises!  Can't wait to see the progress he makes from here!

These pants finally fit him!!

Miss these babies

Therapy dog night!

Swallow study prayer request

Please be in prayer for Chance's swallow study tomorrow early afternoon. Pray that he's swallowing safely and not aspirating on any consistency of liquid. They've been throwing around the idea of putting the ng tube to help facilitate strengthening his suck. Just the thought of having to reput a ng tube in makes my heart sink. 

Thanks for your prayers!

First week of feeding program

Things have been pretty overwhelming to say the least. People are constantly knocking on the door for one thing or another. Chance meets with OT a few times a week. He's doing awesome in that area. Her goal is to have him sitting  unassisted for 5 min before discharge. He's doing really well with that already!  He's not quite to 5 min but he's greeting close. A little wobbly still!  He's working on his pincher grasp too. 

I really like his speech therapist. She's an older lasy with lots of baby experience. He was not too sure about her at first but is warming up to her. He sees her 3x day for therapy. She's working on a lot of oral motor strengthening for his mouth area. He seems to be very weak in that area. She's also saying he has open jaw excursion. Where he doesn't want to close his mouth to properly latch to the bottle. He will close and latch but not for long. We've tried a few different bottles so far with no luck. He's going for a swallow study next Tuesday which'll give a better idea how he's swallowing and making sure that he's swallowing safely. 

We're also feeding every 3 hours again. At night too.  His therapist was saying with preemies for whatever reason, the longer they go without eating the less hungry they become. Opposite of us. So, by putting him on a rigid schedule, it should start to boost his hunger. He was on oxygen for so long that breathing was more important than eating. So Chance doesn't really show too many signs of hunger. Even when he's hungry. 

The ng tube is still looming over us like a dark cloud. His dietician looks closely at his intake, output (we weigh his diapers), and weight gain. So far he's gained 20 grams a day which is in the ok range. He could gain up to 34 grams a day. He has some catch up to do. So, basically they factor all those into play before deciding he needs one placed. I get so sad thinking of having to do that again. The ng is the nose feeding tube he came home with. 

So, please keep praying we can find a bottle that Chance will take and we can begin to see an increase in his intake. 

He's also teething. Getting his 2nd tooth, which hasn't been helping the fact any. 

His doctor here wants us to see a neurologist to rule out anything neurologically wrong that could cause his muscle weakness in his face. It's very common with preemies so it may just be a delay and catch up deal. He won't have to be sedated for another MRI cause he had one done while still at children's med center. 

I just have to keep remembering this is only temporary. This too shall pass. It's just scary. Faith as small as a mustard seed....

            Our humble hospital abode

Intensive feeding therapy program

It's only a day away...We check in tomorrow by 11 am. I have a lot of different emotions going on. I feel drained, sad, and anxious today. I'm desperate for help so I'm excited for professionals to give their opinion.  It's just so draining trying to feed a child who just won't eat. He basically will only eat now while sleeping. When awake, he won't latch on to bottle and suck. He's even started to not do well with solids. He'll refuse to swallow. Oh my God we need help and prayers.  I know God performs miracles and that's what I'm praying for. My faith seems to be waning in this area at the moment. Like no end in sight. But I know better than to think like that. I know God has a much bigger plan than that.

I just started a bible study on Luke 17 - Loving like Jesus, thru Good Morning Girls (http://www.goodmorninggirls.org/) 

These key verses are oh so fitting to my soul!  Isn't it neat how The Lord reveals to you just what you need right when you need it and how it seems to apply to what's happening in your life at that moment?!

Please pray that through this program Chance will learn to eat happily, willingly, and consistently. Also, that The Lord will completely remove any aversion he's developed. 

Also- please be in prayer for our close friends Ricky and Megan Whitaker. Megan went through a series of strokes on Saturday and it did some damage. Please pray for a full recovery with no lasting effects and for Rick to have peace and faith. 

Thank u. Will keep you updated on our feeding journey and Megan's recovery. 

On a positive note- chance sat unassisted for a good 5 mins yesterday!!

Grammy Jen Jen with her grandsons!

First time in stroller!

First car!

Cousins helping babysit with Aunt Shannon