Saturday, February 9, 2008

February 8th, 2008

It's been a busy week. Kinnick's tummy continues to be a problem. We had to take her back to Wesley Hospital yesterday. She is on a 48 hr bowel rest. She will not get anything to eat and will be on IV fluids. They completed an upper GI that they have tracked all of the way through her bowels. They have not found an obstrustion. However her tummy is still huge and hard. Her stomach is empty and her intestines are full of gas. One nurse described her intestines as looking like they are full of large mashmellows. They are doing 2 enemas a day and giving her colace 3 times a day. They are trying to empy the bowels. My understanding is that they believe the bowels are pretty much empty as of this evening. They believe the problem is an illious (sp). This is where the bowel is not moving or is moving very slowly. The only cure they are giving is bowel rest. The say the bowels will just start moving again on their own. I'm worried because the last time she had this problem, they finally found an obstruction after struggling with the issue for a month or longer. She's already lost over 1/2 a pound. We were so happy with both of their last weights. Now we're going backwards again. Right now, I'm really frustrated.

Kinnick and Carver will be a year old March 29th. They are so far behind where they should be. In fact, I'm not even sure where they should be. They don't really fit the normal Preemie adjusted age schedules because of their disabilites - blind/deaf and others. Such small things we take for granted make a huge difference in our developement. For example.. a blind child doesn't have a desire to raise his head because there isn't anything to see. So, my babies don't even have good head control. They want to look down all of the time. My babies need special queues just to change their diaper, feed them, or wipe their nose. Image a kleenex coming from nowhere swooping down and wiping your face. This is how it feels to a blind child. Or, imagine a spoon full of food suddenly being shoved into your mouth with no warning and you can't see it coming. These are things we don't have to think about when we have vision and hearing. We have a lot of work ahead of us. All of this is new and we have 2 of them to work with. My early intervention teachers have told me they rarely get blind/deaf children. Usually, you at least have vision or hearing. So, they are stumbling to help, but assure me they will do everything they can to help get the right resources and answers. It's just very overwhelming. I want to do everything possible to give my children what they need to have as normal as possible of a life.

Sorry this post isn't real positive. I'm just overwhelmed with everything right now. I'm update as I know more, but I expect that Kinnick will remain in the hospital until at least Monday.

8 comments:

Anonymous said...

I will be praying for your little ones and I hope the very best for them. I know it is really hard and frustrating. Just remeber God onlys gives us what we can handle. You know what helps me when I am feeling overwhelmed read Psalms 150. About the signing for blind/deaf children when they get older have them feel with there hands as you sign or teach them braile. I hope the very best for you and your famliy.

abby said...

Have any of the specialists discussed potentially getting cochlear implants for Kinnick and Carver? I know that Noah (Emily's his mom), Ashton (Shannon's his mom), and Eden (Billie is her mom) all have them. Noah and Ashton also have some vision problems, though I am not sure how they rate in acuity to K's and C's. But you might talk to their moms about their experiences with the CI. And all of them have various posts on their blogs (linked to our blog) concerning the CI.

Meanwhile, I am so sorry that Kinnick is having more tummy issues again. I hope that things get easier, and soon, for you guys. You really have been through a really rough time this past year and I am praying that the next one is easier to manage and that you get to enjoy those lovely kids more and stay far away from hospitals!

Anonymous said...

Hey Shanon,
I'm sorry that you are going through all of this, and we still think about you every day. I am on this yahoo group for preemie moms and several have experiences like you are having and it may help...I don't know if you already know about it, but I thought I would give it to you because it might be worth getting on it for some moral support and some ideas...
http://groups.yahoo.com/group/PreemieBlogMoms/
call me if you want to talk.
love, stacy

Sammy'smommy said...

Just wanted to say we are praying. Remember that God is in control through it all. There are so many people praying for your little miracles. God hears!!! I will pray for your little princesses tummy that there won't be an ileus and that this blockage will miraculously resolve. God bless!!!

Anonymous said...

Dear Shanon!
You are always in our thoughts and prayers. Please never feel bad about admitting things are hard. Also, I noticed someone posted the God never gives us more than we can handle. I used to believe that, but I know now there are times in my life where He HAS given me more than I can handle. However, He never gives me more than HE can handle. Two babies with severe disabilities and other children to raise are more than any one person can handle without LOTS of help.

You are doing a great job and I hope you are able to get the support you need. You're life has changed more than anyone could ever imagine or understand unless they've been there. Do you have anyone to help you so you get a little time off? If the babies are stable enough and every thing's going well with Charlie (no RSV, colds, etc) I would love to come babysit for you in the spring/summer so you can have a night off!
Love and prayers!
Neva

23wktwins'mommy said...

You are truly amazing...dealing with everything you do. From the twin's medical issues, development, and the simple day to day care, you do it, and I can only imagine how challenging it can be at times.
I hope the tummy issues resolve soon.
Remember you always have people thinking about you and your little ones, and we're here to support you!

24weeker's Mama said...

Dear Shanon, our heart goes out to you and the twins. My husband & I are so sadden to hear about this recent setback. We pray for you and the twins that they will grow up to have a good life. For you are a truly inspiring inspiration for those of us that have lesser problems to deal with. Keep your faith, God always be with you & we are always on your side.

Love,
Yani Hawaii.

Anonymous said...

I am a Koch Employee. I thought of you when I read this article. Perhaps it will contain some useful information for you. Also something that jumped out at him is that their triplet who has at least some light/dark sight is doing so much better than the two who do not. So maybe there's some hope there.

http://www.rd.com/stories/everyday-miracles/hope-for-deafblind-triplets-light-in-the-dark/article.html

Julie Pool