OT Eval Tomorrow!

Hello Everyone. Just wanted to update you on the current status of Hayden's feeding/fundo/etc situation.
Tomorrow morning he will see an Occupational Therapist who will do oral stimulation and possibly some tastes to see how he handles those things. This will determine if he will get to start some more intensive therapy with food and thickened liquids. We might begin teaching him how to eat!!!! Please keep him (and me) in your prayers tomorrow. There is a chance that when we start putting things in his mouth that he could aspirate and possibly get sick. Please pray that this does not happen and that he is miraculously ready to eat (Hey, He said ask, and it shall be given) :) I know this can be a slow process, therapy and learning to eat...so I will definitely be asking for an extra dose of patience.
Hayden is doing really good though. He's up to a whopping 12 lbs .4 oz!! He's pulling up from laying on his back (all by himself) and his head control is improving tremendously. He's smiling and laughing and 'talking' to us. He's not on high calorie formula anymore (thanks to my executive decision) and so he's able to go #2 easier, which helps with the puking, and he's peeing more frequently too. (In case you needed to know that). He has so much more energy now that he's not full as a tick all the time. It's a blessing to see him smile after all he's been through. He's definitely one tough kiddo.
Oh, and as far as the possible funduplication re-do, I think he might be ok for now since we have the reflux pretty much under control with meds. (He takes prevacid and zantac). It's still our hope that he can start eating a little at a time and that this would help control the reflux too.
Hope everyone is well. Blessings to you and thank you for your prayers.
~Rachel

Hayden Update

So Hayden is about 10 & 1/2 pounds now & getting sweeter by the minute....

We went in yesterda, the 19th, for an x-ray to make sure the operation they did called a funduplication (where the top, tube-like portion of the stomach is wrapped around the esophagus to help prevent reflux and vomiting) was still functioning properly. Long story short...they saw that he was refluxing which means that the operation has seperated. I'm not sure if it's due to growth or what, but it could mean that he will have to have the operation re-done. This would mean hospital time, being intibated, (worried mommy & daddy) :), you get the picture...things that would slow down the amazing progress Hayden has been making.

There was a good thing that we saw on the x-ray, and that is how his stomach is actually emptying at a more normal rate, which is excellent for the rate of his feedings (he won't have to be 'hooked up' for as long).

The surgeon suggested that we possibly try to start feeding Hayden by mouth, which would be thickened formula bottles. He said this might help the reflux issue because there will be thicker stuff in his tummy, less likely to come up into the esophagus. So...this is a huge thing, and depending on what his special care doctor thinks, we might be doing a swallow study to make sure he's not aspirating when he eats, and get this whole eating thing going...

Both options are scary and come with risks, so please pray that God would continue to help Hayden grow and strengthen (and eat too) :)
We'll hopefully be bringing Hayden to church on Easter Sunday for the very first time to meet the rest of his family.

Love & blessings,
Rachel

Sweet Baby Boy

Hello again everyone. We have been so busy with Mr. Hayden and the girls, that time to write new posts has been very limited. We have felt your prayers, so thank you.

Hayden is 12 weeks old now and weighs 7 lbs. 9 oz. It's amazing how much bigger he is than when we brought him home! He is smiling at us and is so pleasant to be around.

We have been in and out of the hospital with Hayden due to breathing issues. The docs are doing the best they can. It's so hard for us because Hayden is a "normal" baby is so many ways, but then in others he is not "normal". We are still trying to figure him out and hopefully it will get easier as he gets bigger and can communicate his needs better.
Keep us in your prayers as we continue to go to doctor appointments of every kind...endocrinology, special care, genetics, hearing...you get the idea. Please pray for energy and patience as we look for answers for the issues Hayden has. Pray for Annie & Valerie too, that they would not grow resentful for impatient during all of this. Hayden and I have been at the hospital more than at home since he was born, so it's starting to really tread on all of us.
Thank you again for the prayers and encouragement. Love you all!
-Rachel

Happy New Year!

Happy New Year everyone! Hayden is home with us as of yesterday! It's a huge blessing, but a huge difference having him at home without nurses or monitors, but he's doing great! The girls are so happy to have him home and we are enjoying our time as a family.  Keep us in your prayers as we continue on our journey with Hayden. Blessings to you all!