Monday, July 2, 2007

Getting Acquainted

Wyatt has now been home for six nights...that is six almost completely sleepless nights. We are trying to get to know him and understand his wants and needs. I didn't realize how little I really knew him until I got him home. I've been visiting the NICU for six weeks, but seeing your child for only a couple of hours per day is no way to foster a bond. I would like to say that he's settling in well; however, we are having a really tough time with him. At first he was being very fussy right after he ate. The nurses in the NICU had talked to me at length about his reflux and spitting up, so we spent yesterday morning at the pediatrician's office and left with a prescription for Zantac. Hopefully, it will help. As the days have gone on, it seems he is getting fussier and fussier, almost constantly. Literally, I don't know if the child gets more than a couple of hours of good sleep in a 24-hour period. It is very hard to comfort a baby that seems so unhappy all of the time. And it's not just that he's unhappy, a lot of the time he sounds like he's in pain. As Todd shared before, he's on a couple of meds for his hypoglycemia, one of which is hydrocortisone, a steroid. After some research, on the internet of course, I decided my son must have "roid rage." I called the pediatric endocrinologist first thing this morning and had my appointment for tomorrow bumped up until today. In the event it was something unrelated to the hydrocortisone, I also had my Thursday pediatrician's appointment moved up until today. After spending the day in doctors' offices, we did come to the conclusion that it most likely is the steroids and we have permission to begin weaning him. As far as we know Wyatt still has a cortisol deficiency so at the very least he will most likely need a replacement dose of the steroids; however, Todd and I did not realize that his current dose is more than double the replacement or physiologic dose, hence all the crazy side effects. So, in order to continue to wean him each day he must maintain fasting blood sugars above 60. He has consistenty maintained blood sugars above 100 since he's been home, so hopefully he'll be okay. Please be praying he can maintain his sugars and we can successfully wean him. It is both heartbreaking and frustrating to see your young child in so much distress.


Melodie Miller said...

It is so good to be back to the blog. We had our meeting last week. I am glad Wyatt is home, but I can tell you are having a rough time. Brady was the one who cried all the time. The only thing that comforted him was his swing...on high speed, no less. I thought he was going to shoot out across the room a couple of times. We are praying for all of you. I know it can be difficult without sleep. Hopefully the steroids can continue to be minimized. Call me anytime. I miss you and can't wait to see you.

Carey said...

I can empathize with your feelings about hearing Wyatt not just upset, but in pain. Know that this too will pass and rest easy(Ha! no, REALLY)that you are doing all that you can for your son. I know the feeling of helplessness and responsibility like you should be able to "fix" or "know" what is wrong. Give him up daily to God and let Him help you raise those boys!

Praying for you and thinking of you daily-

terriblespeller said...

Hey, I hope things improve soon and you can get some sleep.

Not sure if anyone has told you this but try eliminating all dairy from your diet. I did this with my second child b/c of the reflux and it did wonders. I know there is a lot of stuff going on with him that she never dealt with, but what you eat does directly affect your milk and cow's milk can be very tough on a lot of children. It was wonderful advice that was given to me and I know many women who have seen a great improvement with reflux by reading labels on food (research all the words that mean dairy) and avoiding consuming them.

Anonymous said...

Jennifer never slept during the night for the first 4 months, only during the day. She turned out aok

Anonymous said...

hey randi! i'm praying!!! tried to call you today to see how it is going! i'll catch up with you eventually! take care! love, kimberly

Anonymous said...

Hey there Randi and Todd. Girl I know where you are coming from sorda. I found out friday that I have diebetes. I can't seem to get my sugar down below 242. Checked it tonight and it was 425. I hope and pray that Wyatt can beat his hypoglycemia. I love all of you so very much. Please send me your phone number and new e-mail, so I can talk to you guys. I love you all and give the boys a hug and Kiss from me and my family. bye for now.
April ODell

Anonymous said...