Watch Over Me

Please watch over me
I’m not sure where I should be
if I should ever tumble down
I want you to be around
all my bruises you can kiss
I’ll let you know if there’s one you miss
and if I don’t understand
please explain and hold my hand
just don’t forget to give a hug
then tell me that we’ll snuggle-bug
and when you tuck me in at night
don’t forget to say sleep tight

Copyright 2003

Christine Michaels

www.WelcomeBaby.com

I felt this poem was quite fitting for CDH babies and parents… in either situation.

I started CDH Family because I was very frustrated at all the information I did not know during my journey at the NICU with my daughter Kayla. I felt I went into this journey knowing all that I could know but as I grow and learn with my girl I am finding out there was a bunch of information I did not know. Even today as I read all other CDH blogs I find new support from their experiences and ways to help our recent reflux issues.

I was not prepared for the issues after the hospital. I knew she wasn’t a normal baby due to the fact she had two surgeries before she was a month old, didn’t eat until she was a month old… but I wasn’t prepared for the reflux, meds, drug withdrawls, different ventilators- I guess I didn’t realize how awful this defect was until she went through all of the issues these babies have. I believe up to 34 weeks gestation my husband and I thought it was certain she’d be on ECMO as we thought ALL CDH babies went on ECMO. We were wrong.

So I guess this site is inform those who are about to go through this journey with CDH and for those who have been through it and can help those going through it as well, kind of offer their experience and knowledge.

CDH is a tough defect. Only half of all babies born with CDH survive. It is not a well known defect as most parents who find out their baby has a congenital diaphragmatic hernia have no clue what that means. (me included) It took a lot of strength to stay positive during the pregnancy and throughout her stay in the NICU.

Even staying at the Ronald McDonald house was a tough situation.  You are not home, in a city you are unfamiliar with and sharing a house with a bunch of different people.  I am ever so greatful to the RMH, it is fantastic that they have a place like that for families going through some rough times with their children but I have to admit it was hard to come back after a bad day, want to be alone while eating, but can’t because there are a ton of people in the kitchen (11 p.m.) and you can’t eat up in your room.  It was great meeting all the different people but the NICU stay does not gaurantee pleasant days everday- so it was hard to keep a happy face on but you also don’t want to be rude.. so there is also that- if you are away from home I can totally sympathize with that.  Thankfully, for me, Patty (Charlie’s mom) took pitty on me and took me out shopping once and a while – and even sat with me at the dr’s office when I was in a lot of pain!

If I can offer any advice:

please always stay positive as you can not do much with your baby in the NICU but send out positive vibes. My husband and I could not touch Kayla for a long time so we took our positive attitude and sent it her way.