Friday, July 17, 2009

Prayers For Hope

UPDATE

The doctor thinks it is reflux. We begin Prevacid today. Hopefully that does the trick! Thanks for all the support and advice!




It is five a.m. as I type this and though I know the early bird catches the worm, I am not by nature an early bird. I have been up since just before three with Hope. She woke up having kind of a gagging episode. It took me quite a while to get her settled, but she has eaten again and is now sleeping peacefully. She also had an episode earlier where she threw up quite a large amount of her feeding so I am a bit of a wreck tonight and I am just sitting here praying and watching her sleep. We will be headed for the pediatricians in the morning. I am thinking she may have Reflux, which is common in EB babies, but needs to be treated to prevent blistering and stricture of the esophagus.

My gut reaction was to run her to the ER when it was happening, but then the fear of them handling my Hope without good knowledge of EB sank in and once I got her calmed down Howard and I agreed it would be best to wait and take her to the pediatrician as long as she calmed down and was breathing fine.

So anyway, I feel like a nervous first time mom again and am sure I will sit here and watch her sleep all night afraid to fall asleep myself. Please pray for Hope's issue and for our family, as Momma loves her sleep and is getting NONE tonight!


33 comments:

Anonymous said...

Kristy,
I am praying for Hope and your family. I have been following you for a while and you are a strong woman. I like your new page. :) Take Care!

Anonymous said...

Being a Mother is the hardest job in the world. Wishing I could take some of the burden for you.

Hugs,
Lisa

Chris and Emily said...

always daily praying for hope, praying specifically this morning that you get some answers and excellent care at the doctor today. Both my boys had reflux, and Cort had it to the point of projectile vomiting several times a day and it can be very unnerving, and I know that with the EB it makes it even more of a big deal...so praying specifically for you, your emotions, your nerves, and some rest.

Loraaf said...

Praying for your sweet Hope, and that you are able to get some rest soon!

-Lora

Becky said...

My first thoughts were reflux - we had a reflux foster child who also had apnea episodes. We made sure to keep feedings as smooth as possible and then sat her in a bouncy chair for 15-20 minutes afterwards. You are no dummy so you probably knew that already! I will be praying for you throughout the day.

libby @ ninesandquines said...

Praying that everything turns out ok at the pediatrician's! Hope you have a wonderful weekend too!

Alicia said...

Praying for your sweet girl. Praying that you find answers to her gagging episode.

Tiffany Lockette said...

Oh dear. I will pray for little Hope and for you not to worry yourself to death. I hope the pediatrician can give you some answers. Try and get some sleep so you can give her your full attention.

Tara said...

Praying for Hope. I hope you get some answers at the ped today. Sorry she had you up last night worrying. That's never a good feeling. Hopefully you can squeeze in a nap today.

made2bmom said...

Hi- Praying for Hope and your family, please let us know how it went at the Pediatricians when you can..

Allison said...

Praying for Hope and your family each and every day! ((HUGS))

Corie said...

Praying for you. I am sure you fell like a first time mom....you have never had to deal with this before. You are loving your precious one so well. Praying for some rest for you...answers and peace...xoxoxo

Valerie said...

OH, Kristy! I'm so sorry that you have yet another issue to deal with. I pray that they can figure it out quickly! Hugs to you. I hope you can at least squeeze in a nap today! HUGS!

Alyson said...

Reflux can be very scary and stressful.........My son is 13 months and we still have a lot of feeding problems.......I pray that little Hope starts to feel better that you can get a little bit of much needed sleep :0)

Alyson

http://wellensfamily.blogspot.com

Kimberly said...

Praying :)

April Swarthout said...

Kristy,

Praying for Hope this morning.

April

our family said...

Praying for your sweet Hope.
Praying for wisdodm for her doctors.
Praying for rest for you today.
Hugs and Prayers
Rachel in PA

Sara said...

My guess she either has reflux or she has a blister in her throat. There are some w/ dystrophic EB that have more internal issues than external issues. Hopefully it's just reflux. You may not get this in time, but Prevacid works much better than Zantac which is what doctors usually start with even though they ended up switching to prevacid within a few weeks.

Anonymous said...

I am praying for you also. I pray Hope is able to continue to beat the odds of most EB babies (wearing normal clothes and diapers, no real present blistering etc.) She already seems like a miracle in many ways.

From one mom to another and one sister in Christ to another, I'm praying for you...
~Kristin

The Whalen Family said...

I am praying Kristy! I know exactly what that's like...

Renegades said...

I will pray for not only Hope but her family as well.

dwil said...

My daughter had the same kind of gagging incident. I thought she was having a seizure and rushed her to the dr.(first time mom). She was admitted to PICU and after many long tests they found out it was reflux! Thank heavens that was it. Your in our prayers!

Shannon said...

Kristy,

I dont often comment, but I just wanted to say I have been following you and your family for awhile.

As soon as I read the part about the gagging and throwing up, I thought REFLUX! My Son, now one had reflux, and that sounds exactly like him. Sounds like you have a greeat pediatrician who will have no problem diagnosing Hope. My son was on Losec for awhile, but soon after switched to Prevacid, adn was on thi suntil 10 months. It was truly a life saver in regards to sleep, and his temperment. That said the gagging/vomit still happens. You will learn to know when Hope will do a projectile puke, so it isnt so scary. I am not sure wher you have hope sleeping, but make sure you elevate the head of her bed/basinette. Also, as much as I loved laying in bed and nursing my son on my side, this really aggrevated his reflux, as they tend to do better if they are slightly elevated while feeding.

I am sure you knew all of this but I just thought I would let you know in case,

Take care of yourself and that sweet baby girl!

Shannon

Rebekah said...

Praying for you!

Teresa @ Grammy Girlfriend said...

Praying for you....

Astrid said...

My little boy did the gagging/throwing up thing for a little while starting at about 6 or 7 weeks old. Pretty scary. They did an upper gi study on him(which was no big deal) and he was put on Prevacid and it worked great. I felt bad for him because the stuff tastes so nasty and the list of side effects was a little disconcerting to say the least. He never had any side effects from it, praise the Lord, and he didn't have to take it for very long(maybe two months or so). I hope that's encouraging.
I'm praying for you guys.

Anonymous said...

KRISTY
I was wondering, I know you said that Isaac was tested for EB and it was negative but do the doctors now believe that was what both he and Asher had. Just wondering?

Tammy

Amanda said...

Kristy,
My little girl is 9 months old and has had reflux for the past 3 months. It is very scary, especially with your angel being so special. I will remember you and your family in my prayers.

Louisa said...

Kristy, praying that everything is alright with Hope, it must be so worrying, she is such a beautiful baby, fingers crossed that everything is OK..
Louisa

asplashofsunshine said...

You are going through so much. I can not imagine. I am glad to read the update and hope that HOPE does well with the meds. Get some rest... if you can. Take care.

Kelly @ The Beauty of Sufficient Grace said...

Praying here, Kristy...

Melanie said...

BLAH! Praying you see some sunnier days ahead!
By the way, I love the new look of the blog!!

hudson6803 said...

My son had a gagging thing he did a lot. He looked like he was gagging/gasping for air. I asked the doctor a million times and she assured me it was normal. He was a bit of an overeater and spit up a lot. But he was a happy spitter (no fussing relating to the spitting up), so we never put him on any meds. But he seriously would spit up entire meals! Whether I nursed him or bottle fed him (expressed milk) - it didn't matter.