Friday, July 6, 2012

Blessed with success...

It has been about ten months since Isaac has consumed anything by mouth. At this last feeding appointment, I suggested to his therapist that we try offering him a small amount of his blended meals with a syringe. She shot down that idea. And since I'm not really sure what she's waiting for, I decided to try it on my own. It went something like this: "Isaac, have a taste, and then you get the train (or whatever toy I used to bribe him)", he stuck out his tongue, took a taste, and swallowed. I couldn't believe it! At that sitting, he took about 5mL of blended food and then was done. At his next feeding, he had 15mL, and at his next feeding, an entire ounce. By the end of yesterday, he'd had two ounces. There wasn't any crying, or fussing, but there was a lot of cheering, and Isaac stared at me like I was a crazy person. I haven't had as much luck today, but I'm hopeful, and thankfully, because of the tube, we don't have to push him.

Last night, I snuggled with Isaac as he fell asleep, and prayed a prayer of thanksgiving for this wonderful gift of success. A much needed bit of encouragement in the feeding department. As I prayed, I was reminded of all of the blessings God has given to us over the past two years:


  • At Isaac's neurology appointment yesterday, I was reminded that Dr. Gosain (his plastic surgeon) has left University Hospitals Rainbow Babies and moved elsewhere to do great work. It's sad, but wow, I'm so thankful that he was here for us when we needed him. I can't imagine that Isaac's cranial reconstruction would be any more amazing than it is. The man is truly an artist, and forever a blessing to our family.  
  • Our house. You probably know that we live next door to Walter's parents. We moved just two weeks before Isaac was born.They've been very helpful with watching Isabella during appointments and surgeries. 
  • Isaac's physical therapist. I've said it before, but she really helped me learn how to help Isaac. I can't explain it very well, but she definitely has a gift. 
  • Dr. Mahajan, Isaac's GI doctor, who was the first to believe me when I explained that he had GI issues. She was also one of few doctors who understood what I was experiencing as a mom, in search of answers. 
  • Dr. Anne, Isaac's first ENT, who is an extremely skilled surgeon, and also the one who shared with us that we were embarking on a journey of chipping away at small issues, and encouraged us that we would work it all out. 
  • Dr. Witt, a highly skilled M.D. and Certified Lactation Consultant, who met with us when I was being told that I was the reason for Isaac's lack of growth. She confirmed that other issues were present, and that I was doing the best I could. 
  • Halle, a family friend, who offered phone support while in the PICU, and also months later when doctors were doubting me. 
  • My parents, who have sat with us before, during, and after surgeries; brought food to us, tagged along to appointments, and offered encouragement. 
  • Walter, who has stood by my side through it all.
  • Adrianne, our friend who before becoming a mom, was a Child Life Specialist, and answered all of my pre-surgery questions, and offered support. 
  • Sarah and Michael, I could write a whole post about them. They're family, period. 
I know I've left stuff out, but this is all that came to my mind last night. We are so blessed. 

Time for pictures!


Craft time. Isaac takes crafts very seriously.


 This picture was taken right before Isaac had his first pool experience
 Walking!

Math time!



Evelyn, who doesn't stick out her tongue like Isabella when I ask her to look at the camera...






Evelyn's been making us laugh with her puckered lips...



 Isaac scooting around in an inner tube and cheering for himself...



Have a wonderful weekend!

2 comments:

  1. I don't really have much to say, but I really admire the way that you advocate for Isaac. It's so hard to question health professionals sometimes, but we know when our mommy instinct kicks and tells us what we need to do. Hugs.

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  2. That's awesome that he likes the tastes & took them willingly. Have you heard of a hunger based wean? Check out Tube Fed Kids Deserve to Eat (http://tubefedkids.ning.com) - basically, it's the European model of weaning that lets kids get hungry in order to wean.

    (PS - Beth Branco told me about you - she's my SIL and my son is tube fed too.)

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