Thankful for Gain

Mitchell was 14 lbs. 4.6 oz. on Thursday- an increase of 9.6 oz. in one week.
His new Physical & Speech Therapists will be seeing him on a weekly basis. Still not interested in eating, but hoping to see progress with time. He is not too fond of anyone else touching, but their ideas for intervention are greatly appreciated. I am looking forward to working with them.

Thanks to grandma, Ted & I were able to spend some time together today. We enjoyed a little shopping & dinner- 5 hours just the 2 of us! It was wonderful to have some time alone. Mitchell did great- didn't cry & took a couple of naps for her.

Hoping for nice weather tomorrow, so we can all go to church together.

We are planning Mitchell's dedication for next Sunday, Feb. 7th.
Thank you to Tim Parton for making a sound track for "I Know the Plans I Have for You" for Scott to sing.

Last Thursday I took Mitchell for his weight check- only gained an ounce, but his length improved on the growth curve. It is possible that there could be a variance- this weight was at the Cardiology office; the previous was at the pediatrician. We had hoped for more, but at least it is a gain.
We increased each feeding just slightly, adding an ounce more per day. The retching continues to be a problem, but the added volume doesn't seem to have made it any worse. Getting over the virus has actually helped that some as well. Hoping to see more gain this week.
Mitchell will be re-evaluated by a new Physical Therapist on Thursday; then he will see his Speech Therapist. Still no interest in food- actually quite opposed to it, but we'll keep trying it.
I'll try to get this week's update posted sooner.
Thank you for your continued support!

Weight gain

Just a quick note-
Happy to report that Mitchell had gained 3.5 oz. in the last week.
Glad to be headed in the right direction!

Update

Last Monday started with a visit to the Pediatrician's office for a viral rash- thankfully, it has been fairly uneventful. Quite spotty for a few days, but the daily Antihistamine has helped. Still has a few spots this morning but definitely an improvement.
His weight Monday was the same as the previous Wednesday- at least no loss, but hoping for gain this week.
Wednesday was a trip to Atlanta- Mitchell rode pretty well for 10 hours in the car. His surgeon said we are doing everything we can related to his feedings/reflux. He is going to give him some time- hoping to get back to his growth curve. If he can't tolerate enough volume, then we will need to consider a different type of feeding tube.
Since it has been a month since his surgery, I am working on transitioning from continuous feeding to a bolus feeding again. He has 2 hrs on and 1 hr off at the moment. He seems to be tolerating 1- close to 2 more ounces a day this way.
Still having difficulty with the retching, sometimes it is when his feeding is off. He just seems to be quite sensitive.
We are heading to the Pediatrician at 1 today for his RSV vaccination. Hoping to see a little weight gain!
It has been quite cold for FL recently, so Mitchell has been staying in- needing to get over his little virus; and trying to avoid the RSV which is making its rounds.
He has an occasional cough, but it seems to be connected to when he is trying to reflux. Mackenzie had a cold when he started with the rash; they said it was a different manifestation of the same virus. Hoping he doesn't have any viral respiratory symptoms.
He has made progress socially- All of the sudden on Friday, he was happier to just sit in his chair; and he let grandma get him out of his bed and hold him for about an hour! Ted & I took advantage of this & went out to dinner Saturday night. It was very nice to have some time just the 2 of us. Thanks, mom! Little man decided to sleep the entire time we were gone.
Mitchell will see a Speech Therapist on Wednesday morning. We are hoping to work on his aversion to taking anything by mouth.
For now, his weekly appointments are just for a weight/BP/O2 sat check.
His next echocardiogram will be in February.
Hope you all have a nice week!

Prayer Request

I have not been the best at keeping things up to date recently.
Things have been a bit hard since Mitchell's last surgery. We were optimistic that he would make progress after the hernia repair; but sadly, he is even more uncomfortable.
He had a revision of his fundoplication (part of the stomach wrapped around the esophagus to prevent reflux) because of his hernia. Because his previous fundoplication had become "floppy"; the surgeon moved down & made a new wrap. This actually made the volume of his stomach smaller.
He has several significant episodes of retching every day- trying to spit-up, but since he can't it causes a lot of pressure & pain for him. We both end up crying. I just wish there was something we could do for him. He is not getting the volume of formula that he needs, and is still having problems. I am concerned that he will get a hernia again (if he hasn't already). Prior to the surgery, he was doing much better with the upper GI issues- spitting up only occasionally. Were it not for the hernia, he would not have needed the surgery.
He has not been able to sleep more than about 30 minutes at a time; even at night, he is waking up frequently- probably a dozen times a night.
Are primary concern is for Mitchell- that he will be comfortable & can tolerate the feedings that he requires; but we are also getting quite tired. Mitchell only allows mommy and daddy to hold him; he screams if anyone else attempts to pick him up. He does better with movement, so we walk around the house with him a lot of the time. He's quite the Daddy's boy- I think Ted likes that, but once he is in sight Mitchell expects him to get him; and he knows how to get his attention. I feel very blessed to have a husband who is such a good daddy! We celebrated our 10th anniversary on New Years Eve with Chili's take out and watching G-force with the kids.
We are so thankful that Mitchell is here with us today after everything he has been through; but we are praying to see progress.
Thank you for your support & encouragement!

Mitchell's First Christmas

Mitchell Christmas Eve


Mitchell's First Present
Barn & Farm Animals from Grandma Huff


Christmas Morning
Special Present from Grandma Holz


Mitchell & his bear

Cardiology Appointment

Mitchell's appointment went well today.
His weight was down a bit compared to pre-op; but better than when we left the hospital last week. We will continue to work on the total volume of his feedings; hoping to see improvement with his tolerance.
His oxygen saturation peaked at 88%, and his blood pressure was a little elevated. The medication he was on prior to the last surgery was not restarted. We will follow-up with a weight and blood pressure check next week, but he is not due for another echocardiogram for 6 weeks.
Thank you for your continued encouragement.
We are happy to be home & looking forward to Mitchell's first Christmas!
Wishing you all a Merry Christmas!