Thursday, May 19, 2011

So It Begins

Jack just began a huge, huge step in his personal journey.  It's something we've longed for since Jack's birth. It's something so very human, so much a part of the makeup of society, and in our home, something akin to celebration and good times - the ability to eat.

I'd be lying if I said I wasn't extremely nervous. I just am. I've been having a hard time sleeping this week and I can feel the anxiety creeping in. I know this is pretty much a waste of time and precious energy, something I will need to make it through the next three weeks... but I've been feeling it. We leave for Seattle this weekend and then Jack's journey goes into high gear.

I'm having that uneasiness in my stomach. That restlessness. The loss of appetite. Funny how one loses their appetite when desperately wanting another to gain theirs. I'm doing a lot of second-guessing. I want to go into therapy next week strong, able to follow my instincts as Jack's mom. For me, I spend too much time trying to will Jack to do something, when I know he has to do it on his own. He has to put the food in his mouth. He has to chew it. He has to swallow. This is so hard for me, but I know not nearly as hard as it will be for Jack.

He is about to go through a great battle with his fear. Fear of swallowing, of texture, and of anything near his mouth. This is common for micro-preemies or any baby that has had a tube stuck down their throat to help them breath. The medical term is called oral aversion. Some issues are behavioral, others are medical. Jack has dealt with severe reflux since birth. That plays a major role in this. Jack had a ventilator breathing for him for the first two months of his life. And he was tube fed from about 28 weeks gestation on. So his history is very complicated.

It's hard to willingly starve my child, but it's been proven that this method works extremely well. It might take a few tries, but we are believing that Jack can do it in one. We need Jack to feel hunger, plain and simple. Tube weaning for us means reducing the amount of formula Jack gets through his tube over the span of 5 days. Today I didn't feed Jack breakfast, only water. Tomorrow, I won't feed him breakfast or lunch. I will only offer him food orally for those times. We will reduce his calories by 18%, 34%, 50%, to 79%. Once he reaches 79% reduction, he will stay there for our duration at Seattle Children's Hospital. And when we leave, we hope and pray he is 100% reduced and not getting any calories through his tube.

Today Jack has taken about 20 small bites total of food and a few sips of water. I offered him some greek yogurt and black sesame cereal (thanks Daria!). He seemed to enjoy it, but didn't want much beyond those bites. I think he needs to be more hungry. All I know is that I don't want to get our monthly delivery of Pediasure ever again. It has served it's purpose and allowed Jack to grow, but we are so over it!

I am also nervous about Jack being in therapy three times a day. That is a lot for a two year old. At home, Jack only has therapy once a day and that usually is about all he can take. I am praying that he enjoys his therapy as just play time. I don't want him to feel overwhelmed or scared. I am so glad that both Jon and I can be there with Jack through it all. We are all going to need each other.

I saw a necklace once that had an imprint of teeny tiny baby feet and around it said "you are worth it all". I say that quote a whole lot to myself. Sometimes the hill we are about to climb seems so daunting. But then I have to remind myself about everything we've already been through and how this, being tube-fed, is really not that big of a deal in the scheme of things. Yes, we want our boy to eat and will travel basically anywhere to help reach that goal. But we can still have a wonderful, happy and meaningful life, with a tube.

Jack's little personality is blooming right now. I can tell he is feeling all his emotions to a much greater extent than before. Especially when he is mad. Oh boy... when he is mad. Watch out! He is also showing affection so sweetly. I cherish all of his kisses and hugs and snuggles. He gives them freely.

If you are wondering how to help us during the next little while, we would sure appreciate your thoughts and prayers sent our way. Some will be fasting, along with praying for Jack over the next while. We also love your comments on the blog, texts, and emails. We won't be able to respond to them all, but to have your support would mean a great deal.

Some specific ways to pray:

-That Jack would feel HUNGRY!
-That he would get over his fear of texture and swallowing.
-That he would eat more than ever before.
-That he would learn to love food.
-That he wouldn't feel anxiety.
-That he stays healthy - no sickness during his wean!
-That we would be able to stay at the Ronald McDonald house.

I will be updating this blog as much as possible. So check back often to see how we are all doing and please pass this along through email and the Facebook page - Life with Jack.  We will probably be updating the most through Facebook while we are in Seattle.

Today we had a little time to go outside. My tulips are blooming and I'm sure they will be gone by the time we get back home from Seattle. As usual, Jack loved being outside.

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Nik, Lindsay and Pierce Franks said...


We will definitely be praying for you guys as you embark on this journey. Praying that Jack will discover one of my favorite joys in this life- eating :)

Julie said...

Tears for you...this is a hard and good thing! You will all be in my prayers as you face the challenges and joys of the next several weeks.

And I love the picture of you, Jack and is just so YOU and beautiful and real!

CHOMP Jack! :)

Shannon said...

Praying for you all. I simply cannot imagine....c'mon Jack, we know you can do it!

Babs said...

You can do it Jack! Sending you lots of love, Jessi.

Lori said...

I'm cheering you on, Baby Boy!

Sarah Pope said...

Praying for those things on your list specifically...and for YOUR anxiety. I know it must be rough. Can't wait to hear how he does!
PS...I also LOVE the picture of you, Jack, and the dog!

Cathy Burwell said...

Hang in there - we will be rooting for Jack and praying this works quickly! Love the updates - he's such a cutie pie! Hope everything goes as planned! :)

Rebekah said...

I love the picture of you and Jack Man! Beautiful! Love you and your little man. Will be praying and thinking of you a lot.
You can do all things through Him! Hold firm to this truth! He's got your back :)

Daria said...

Jack will do it, but my guess is that he will feel anxious. This is BIG step for him. A wonderful step but he will need to work through many issues. It is SO hard as Mamas to step back and realize that you can only give him this opportunity and you can't force him to do it. This is one of the best opportunities you can give him and Karen is a wonderful guide.

Hang in there. You are a fantastic mama. I will be thinking of Jack and sending him hunger thoughts. And I wish YOU patience, less anxiety, a little hunger and the ability to stand back and watch your amazing two year old eat. Good luck, it is so hard and it takes time, but oh so worth it. Hugs!