Sunday, May 17, 2009

Knowing the right thing to do.

So Miss Ava is taking a step backwards. The last few day we have noticed her tummy is becoming louder. The grumblings are stronger. This is a warning that the bacterial overgrowth is picking up steam.  Her tummy has been measuring bigger but then it wil go back down over night. Well last night she awoke many times I would hear her stomach grew really loud, then she would cry for a second then go back to sleep. I’m pretty sure she gets bad cramps. I knew the next sign would be the “water running sound “ her stomach does with this overgrowth. Then would come the vomiting stool. Oh how right can I be? At about 5 am she started the water sounds then started gagging. She finally threw up the stool at about 8:30 am. So here we go again.


I have called Iowa City and are waiting for them to call me back. I asked for a new antibiotic. I swear the drugs stop losing their effectiveness to fight the bad bugs or they fight all they can and can do no more. I feel like screaming.!!!

I know we back off food (she still is hungry and wants to eat) and start the process a over again. I am running Pediatye through her g tube. My hope is to avoid the hospital  like we managed to do about 10 days ago.

So I’m in that “not again” mentality. It is clear her obstruction is getting the best of her. I just can not bear the thought of having another surgery. This is so unfair. At her last appointment I sat there thinking of all the sick kids that were all there that day. I kept wondering why this happens….why does God allow so much pain in children? Then I came to a thought. Is one of the reasons so that doctors can learn more….therefore eventually saving more kids? I know there is a plan or lesson to be learned in all of this……but why must Ava suffer?

If only you all could hear my prayers the last few nights to God. If we adults are sick we run to the doctor and beg for medicines to make it go away. In Ava’s case and many complex kids,  they have no answers as to why things work and why sometimes they don’t. This has to be the most frustrating part. She can’t talk so it is hard to know what she is feeing. I do know when she cries she has had her limit. Ava is so amazing. Right now she is watching Elmo. She smiles and laughs at the funny parts. She has just learned what “humor” is….or so she thinks!

This is last night. She loves snuggling with Daddy.


I guess all we can do is pray. Thanks for the support.



Lacey said...

ugh, how much longer do you have to do this? Maybe surgery would be best to just get it out of the way so she can finally feel better. I always wonder why it seems like God picks on certain kids and other kids never get a scratch, its definitly not fair.

stephanie said...

You know I've never been an overly religious woman, until my son was born that is. He has T21, CHD, and a CDH. His life has been so complicated, so hard. Now, at 3 1/2 years old he's just learning to walk and weighs in at 24 pounds. He still needs O2 at times and is fed thru a g tube. He's a peanut who's had a rough way to go. Personally, I don't buy into the questions of why God allows some kids to suffer. I don't think I could praise a God that would allow such a thing. Human bodies are complicated, mistakes of nature happen everyday. It's genetics or it's environment I believe. Not God. I don't believe he created these troubles in our babies, I do know that he is there to comfort and teach us through the pain and worry, in some cases he is there to hold our babies in HIS arms until we can be together again. He carries us down these paths of uncertainty, I do not believe that he led us there. So in your times of trial try not to wonder "why?" Just know that HE is there, and so are we.

Heather said...

Hi, you don't know me, but I follow your blog and a few other CDH babies' blogs. I'm a nurse in an endoscopy unit in PA. Has Ava ever been tested for the bacterial overgrowth? We do a breath test in our unit that is specific for bacterial overgrowth. She would drink (or I guess put it in her G-tube) some dextrose liquid, then over about a 4 hour time frame she would breathe into bags (kind of like filling a balloon, but really easy to blow into). Then we test the air in the bags for hydrogen. There is a significant increase in hydrogen if there is bacterial overgrowth. This wouldn't be a cure, but then you could know for sure if it is overgrowth or not. Its a simple non-invasive test. The test is not offered everywhere, but maybe you should ask the doc about it.

CureSMA4Stella said...

So sorry to hear this you guys. I will keep praying . . . yes, HE is the great physician. It's just hard to understand "why" sometimes. Praying for your peace and comfort and for Miss Ava of course!
Love, Sarah and Stella

Bryan said...

So sorry for you all. I know your frustration. Just hang on...I never thought we'd be doing as well as we are right now. The sad thing is I also know it won't last, so I'm trying to enjoy it. Hang on to God...better days are coming!

Grandma Reed said...

I try to keep up with what is going on with Ava. I am so sorry she has such a rough time. It is so hard to accept what we are handed and not ask why. I guess we are to just rely and trust in God. For if we don't have that Hope and Trust, what do we have? Sometimes we forget to count our blessings and dwell on our trials. Thank you for hanging on to your faith. Sometimes the trials are a blessing, we just don't want to realize.
Angel Elli's Grandma Reed

Anonymous said...

I just wanted to share a little thoughts about God in all of this. I have a deep abiding faith in God and I question all the time why things happen in life...why it seems some of the best people have some of the worst things happen. After literally agonizing over these difficult questions I really just came to the conclusion that it all goes back to the fall of Genesis 3. When mankind fell then death came into the world. I believe death includes all things that threaten and hurt our health from the comman cold, to the flu, to cancer, to genetic defects, and also unfortunately CDH...anything that is bad, that is cruel, that is threatening to our bodies ultimately is NOT from God but from the fall, thus from Satan, not God. Yes, God allows these things since the greatest gift He ever gave us was free will but mankind used that free will and we fell... now we all have to suffer the consequences of that fall, all of us unfortunately.

The child who is sick, the teenager who is killed in a drunk driving accident, the young Dad who dies of lymphoma, the middle aged mother who has breast cancer, the grandfather who has Alzeimer's being robbed of all his is all a result of the fall, not God picking on anyone of us.

GOD LOVES AVA and he LOVES YOU. He hates as much as we do the suffering we experience in our lives, and we all will in some form or another. Life is a tragic as well as joyous experience. He is there to carry us through these things and we all will ultimately have to die...some young, some middle aged, some old, some before they are ever even born. No one wants it to happen to anyone we love, no one wants to see loved ones in pain no matter what the age, but especially the young of course...but whatever the age, it is all suffering.

Remember you aren't alone. God is right there with you, and we are praying for healing. I hope total healing happens but even if it doesn't He will carry you , Ava, and your whole family through grieves him when he sees what you have to go through. He will give you what you need to get through it and keep your faith and grow ever deeper in understanding his grace, his mercy, and how he is much more powerful than the fall, than Satan, than death and than CDH.

Be strong and courageous. GOD LOVES YOU and I know it's hard to imagine, but He loves little Ava even more than her adoring parents because our God IS LOVE.

Praying for you and sweet Ava. Be strong.

Julie Power (