Friday, January 23, 2009

It all comes down to the food...

I want to believe he is fine and nothing at all is wrong. He is still alive, which is amazing given his start. He has done well weaning off medicines, gaining weight, having bowel movements, and seems like everything else...except eating. Edmund still only gets small amounts (15 ccs) in a bottle. He can usually take that but spits up a little or has trouble making a seal...or coughs. He has only gotten to practice twice a day with a bottle - everything else comes through the tube in his nose. He needs to get up to like 60ccs (I think thats like two ounces) with a bottle before we can begin to think about coming home. He needs to consistently take the 15 ccs so we can do a swallow study. It is all somewhat confusing.

So who knows how much longer we will be here. The frustrating thing is this is were insurance and policy start to take over. They have to follow this pattern to keep insurance happy and to cover malpractice issues. If he isn't able to get to where ever he needs to get then there is some tube they are going to put directly into his stomach so we can feed him that way. The doctor told us tonight that they need to make sure that his brain can tell his airway to be blocked when he is feeding. She said that just because there isn't any damage doesn't mean everything is functioning correctly.

So we have a long road. We are getting tired. This morning we slept in until 7:45 (I am supposed to be at work at 8) Thank God I have a great and forgiving boss! I realized today that our house hasn't been vacuumed in almost a month. (ew) At this point it might just be worth it to have the carpets cleaned. We have like no groceries either. I never thought I would get here, but I'm almost to the point where I never want to eat out again.

We just want to take him home and start being a family there. It is hard to be patient - but at least we are fortunate enough to have a situation where we need to be patient! It is just hard to remember that - keep praying for us, please!

Love,
The Swenders

10 comments:

tippi57 said...

We will continue to pray, have never stopped. As hard as this is to believe right now. Very soon he will be home with you where he belongs and this will be a distant memory. You have to stay strong, eat right and get enough sleep. You have to be strong for eachother. My heart and love is with you!

Auntie Nancy said...

Edmund is SOOOO adorable!! God has seen him thru so much up to this point and i am sure He will see Edmund thru this as well. You have had our prayers since Heidi's water broke ;o)! Wow, that seems so long ago. One of my bery good friends lived in the NICU for a very long time with her son who was born at 26 weeks. She wold be a great support link if you need her. In fact she was just in Indy (Riley's)last week having a feedling tube placed in her son's little tummy. He just turned one and is having a hard time eating. She would really help you out if you need her. No one knows what you are going thru except those who have been there. Sleep and eat as well as you can so you can give Edmund your all when you are at the hospital. We love you and will continue to pray for your family. Love The Koedykers

Jenn4him said...

Hello we are friends of your cousins Kevin and Kim K. We too have been praying for you all. Our youngest son was in Riley for 30 days and had 2 surgeries for a very deadly birth defect. By the grace of God he is alive and well, now 7 years old and very healthy. May the Lord bless you and keep you.
Jeff & Jennifer H.

tippi57 said...

Had to comment again.
Edmund is just cute as a button!
I feel like he is looking right at me! Give him a hug from me.

Anonymous said...

Thanks for the picture. I ask mom every day if there is any new news. Liberty Salmine (the youngest one...4 years old) gave mom a card and is praying for Edmund too.

I love you!
Noah

Anonymous said...

You know over the years I've seen a few babies and I think that some throw up more milk than others. I know you just want to take him home and love him but I guess we have to go with the doctors advice and trust GOD!!!
Trusting is not always easy, but I understand having faith is not knowing and trusting that God knows best. After all he gave us his one and only son to live a few years here on earth and die a awfull death so we could be saved from our sins. Try to immagine that, oh thats right Gods understanding is way above ours.
I remember Jackie saying to Mom and I that Edmund was a very sick boy and when he was on the ventalator that was easy to see, but we said God is great and we will leave Edmund in HIS hands. I know when Edmund has made so much progress the waiting and trusting isn't any easier is it? In fact maybe harder.
We are all praying that God will continue to bless little Edmund, he is a beautiful baby.
Every day someone ask me about him and says that they are praying from him.

Dad Boerema

Jessica said...

We will continue to pray for you. Remember that when you are at your weekest, that is when God carries you. I can only imagine how tired you both are and how hard this is. I look forward to the day when we hear you are able to bring him home. God will give you rest! Praying continually!! Love Rusty and Jessica Faulkner

Lei said...

What a beauty! He's lookin at the camera as if saying "I got this." Lilly threw up A LOT. She was a good puker. I was always so afraid she never got enough, but she gained weight, so doctors said she didn't have problems. (we wonder sometimes now) :D I can't imagine your frustration, but the strength you show as a family is great. Asking for prayer is such an awesome strength and virtue, and shows such a good example to all, including Edmund, especially when he gets to look back when he's older and read all this. Prayers, Lei

Michelle said...

Praying that God will sustain you both...
Love, Chris and Michelle

Anonymous said...

Praying for you and Heidi to stay strong..Edmund will find his way to feed from Heidi more and more after he is weaned form narcs...He is your beautiful miracle...Although this has felt to you the longest days of your lives... This will pass and you will be a family at home sooner than you think...My niece Sarah was due Feb 4th..born November 25...Long time spent in hospital too..she is now 23 yrs old and healthy and happy and soon to graduate Purdue pharmacy school...Praying every day for you..Sherry..(Your mom's friend)