Saturday, August 8, 2009

OT's Input

Jimmie's Occupational Therapist came yesterday almost as soon as she heard Rachael needed her. She showed up just as Jimmie was starting a feed- so perfect timing. She does not think it's an Oral Aversion as those kids reject anything near or in their mouth. Jimmie sucks on anything that he can get into his mouth. His hands, your shirt, your collar bone, his paci.... She thinks that it has to do with the discomfort he has experienced with his reflux. He's remembering what it feels like and as soon as he gets enough milk in stomach to not be starving he stops. Basically he doesn't fill his tummy because that has caused him too much pain. Rachael is keeping him on the Xantac and may try the Prevacid sometime in the near future just make sure he is not still burning. His puking has been almost non existent since he has been back on O2 though so that is good!

The OT said it could take up to 6 months for Jimmie to forget and stop associating his feeds with pain and discomfort. Poor little guy.

Rachael is doing much better. She has been able to look up and out and let go. Jimmie is taking very small feeds every two hours or so. He is probably not getting enough to really chunk it up, but we hope it'll keep him out of the hospital. He takes the small amounts pretty peacefully. Rachael is going to effort to look at the big picture and go from there. Jimmie's Dr. S. and the Neonates at Children's will help her make sure Jimmie is taking in a safe amount.

Justin and Rod did go back to the lake. Pray for them and Kathy as well. Everybody has struggled with this in their own way and it's been very hard for everyone close to Justin, Rachael and Jimmie. Justin was doing very well yesterday before he left. He was very encouraging and supportive to Rachael and he seems to be starting to be able to pull Rachael up some when she's down instead of joining her there. That is definitely what Rach needs. She needs to be surrounded with positive hopeful energy.

You guys are great with your support and prayers! Keep fighting for us! We are so very grateful.



  1. I have another friend who gave birth to a 28 weeker at Overland Park and he is home now and on oxygen. They have had the best luck with the Prevacid but had a hard time getting the dosage correct for him. He still pukes but it's not a painful puking though she said he hasn't done it in a few days. They think they have finally gotten the dosage corrected now because his puking has stopped. He still puked with the O2, but I know that every baby is different. Maybe he'd have better luck on the Prevacid??

    I never thought about the association with pain and feedings. It's amazing how smart our little babies are! Feedings for us with Josie were a nightmare (though not as bad as Jimmie's) for months upon months. We did the Zantac but still had to lay out 2-3 full size bath towels at each feeding because she'd puke after every one of them. Once on the Zantac, she still puked but it was non-painful.

    My blessed husband made up a song for Josie that went like this: "I'm not hungry but I must eat, so my mommy doesn't freak!" Needless to say, I had to force feed her like Rachael has had to. Though Rachael has it MUCH tougher than we ever did. I just can relate a bit to the nightmare of feeding times, the puking, and the stress, the need of weight gain.

    Still praying here and I'm so glad to hear her spirits are much higher. It was a growing experience for me spiritually and I had to learn that the Lord was in control, not me. He literally had to peal my fingers off of her in order to let go.

    Thank you Amber for the transparency of your posts so we know how to specifically lift up this precious family.

    Allison Dull

  2. Praise the Lord! We're so happy that he's happy and doing better. We'll keep on praying for all of you!

    Love and hugs,
    Adrian and Janelle

  3. Keeping those prayers coming.

    Rachael has been so vigilant. I hope that some of these changes and the help from Dr. S. and the OT have helped her.

    When my twins were 2 weeks old the pediatrician told me I must be abusinig my daughter because she had not yet gained back all the weight she lost after birth. My son had already gained 1 1/2 lbs. So we changed doctors.

    The family practitioner we saw was quick to point out to me that they were different when they got their first immunizations. He told me to never expect them to be alike. That really helped. At 3 months he weighed almost 15 lbs, and she weighed in at 10.

    Praying, praying....

  4. Rachael,
    You need some "YOU" time, a little time to help you sort through your current situation or reflect on things. Maybe a good movie and a nice quite dinner with your husband or a few hours at your local spa. Just a little something to help lower your stress level and uplift your spirits. As a mother, I know this will be easier said than done, but you have a wonderful support system just waiting in the wing. Remember, baby can sense Mom's energy and in many cases react in one way or the other towards it. I pray that you find, "PEACE" in knowing that you are a wonderful mother and you are doing the best you can to help your little guy. Everything will be fine; you must know and feel it from the depths of your every fiber. Continue to hold on to God's hand and exemplify patience, peace, and wisdom.

    Amber - You are an awesome sister and thank you for keeping the rest of us posted. You are God sent in more ways that you could even imagine.

    My prayers will continue to be with your family!!! God Bless+++
    Mrs L. Williams & family (Co-worker Kathy G.)

  5. Rach cousin Kelly's children had the reflex problem if I remember and you may ask if there was any one thing that helped with them. I no as I did daycare it is hard when you feed them and they get sick, but it will pass I use to almost sit them up when feeding and then any pressure on there tummy they would get sick so couldn't put them in a bounce chair or sit on your lap because would get sick it's hard I feel for you and these children I watched were not my own per say even thou it felt like it a lot. I remember giving them stomach medication and it didn't really work they just had to grow out of got so much better when started giving them food. Pray for that day to come soon because it's a big diffrence. Praying for you just take a deep breathe. Love you guys Shari