Monday, August 29, 2005

And the Hits Keep Coming...

This is a hard post for me to write and I have to admit that I've been stalling, trying to give myself time to absorb and digest the news. Part of me doesn't want to share because writing it makes it real, and forces me out of my denial. The other part of me knows that I have to face the facts and move forward. I also share in hopes that someone out there can read our story and gain hope, comfort, support, or strength from hearing about our experiences. That is really why I started this journal in the first place. So here goes...last week I got the results back from Eden's MRI. The MRI showed Periventricular Leukomalacia, or PVL, which is a softening of the white matter of the brain near the ventricles. The softening occurs where brain tissue has died as a result of getting too little oxygen at some point before, during, or after birth. It is likely related to the Grade II brain bleed that Eden had after her birth. PVL is strongly associated with Cerebral Palsy. In fact, Eden's neurologist told me that it is considered the "radiologic equivalent of CP." So, Eden has been officially diagnosed with Cerebral Palsy. The words "mild" and "slight" were used to describe the PVL. However, this apparantly does not correlate with outcomes for the child. Some children with severe CP have normal MRIs and some children with very mild CP have terrible looking MRIs. So we still have no real answers as to how bad Eden's CP will be. All we really know is that the hypertonia (tightness) in her leg muscles appears mild, and the hypotonia (floppiness) in her trunk and neck is "moderate." I guess the best case scenario is that Eden will slowly make progress and will eventually learn to sit, crawl, and walk. Worst case scenario is that she will never be able to do any of those things... Unfortunately PVL is also associated with a myriad of other problems but I can't even go there yet... I will continue to hope for the best and love my baby as hard as I can.

Ok, I am glad to get that over with... Now for the good news. Our insurance company has pre-authorized Eden's Cochlear Implant and it is going to be covered 100% (minus the $250 deductible that we obviously have already paid)!!! Her follow-up programming and speech visits will also be covered with no copays. We have a final consultation with the surgeon scheduled for Friday the 2nd at 9:30am. We will set a surgery date from there. I am hopeful that it will be before the end of September.

Ok, let's move on for a little Holland news... Holland is sitting very well now for longer periods of time, and we can just tell that she is proud of herself. Recently she has begun to get a little frustrated looking for a way to get down from sitting. Her newest solution is to try and slowly curl down backwards to avoid hitting her head too hard on the floor. It is very funny to watch and I'm sure she is getting a great ab workout.

Holland's eczema continues to be a daily battle. She is having more good days than bad, but occasionally, like today, she has a flare up. Today we discovered yet another food allergy. At least that's what I think it was. I have heard a lot about the incredible health benefits of egg yolk for babies and thought I would give it a try. Everyone says that the egg WHITE is the allergenic part of the egg so I wasn't too worried. Well, Holland took about 2 bites of the yolk and didn't like it. I didn't force the issue and took her to bed for a nap. She wouldn't go to sleep and ended up crying and throwing up in her bed. I didn't think too much of it because occasionally when she gets worked up over going to sleep she will start coughing and make herself throw up (this happens VERY rarely, usually she goes to sleep with no fuss). I brought her into my bed to watch a video while I read my book. After about a half hour she started fussing and rubbing her face all over the pillow. When I looked at her her eyebrows were bright RED and upon further inspection I noticed that a terrible red rash was spreading all over her face, chest, and back. This is the exact same reaction that she had to peanuts and shellfish in my breastmilk. It seems that I can conclusively say that Holland is allergic to eggs. Yolk or white, it doesn't matter. I called the allergist and made an appointment for tomorrow. We may end up having to do some allergy testing with her to determine if we should be carrying an epipen with us in case of emergency. So far we have been lucky that just her skin seems to react and her breathing remains normal. After a dose of Benedryl and a nap she was pretty much back to her normal self.

23 comments:

Anonymous said...

I can only imagine how hard it was for you to share the news about Eden with us. I know you know how many people love and care for you all, and we will all be here to support you 100% of the way. Eden could not have better parents (and loved ones) to help her down the road with whatever challenges she may face. Stay strong and POSITIVE!! She is an exceptional little girl (as you well know)and has the love and support of two great parents, nothing could be better medicine! Poor Holly and her allergies, I feel her loss everytime I think that she can't have peanut butter ice cream (As I'm sure her mommy does). Keep your chin up, when you need to cry you have lots of shoulders to lean on, and when you feel like laughing were here for that too! Love You All Liz

Stacey said...

Hi, I am the mother of b/g twins that were born at 26 weeks gestation. My children are 8 months old now. I found your blog one day when the babies were still in the hospital and have been following it ever since. Your daughters are beautiful and you and your husband seem like wonderful parents.

I wanted to finally post a comment because today's entry made me cry and is hitting very close to home. My son, CJ, had grade III and IV IVHs with hydrocephalus. We have had several MRI's and so far everything looks okay but as you know that isn't the only predictor of outcome. We still worry about CP all the time. I hate the "wait and see." They are doing fine so far, they have OT and Early Intervention twice a week. I can relate to so many things that you write about.

I just wanted to let you know that you seem like a very strong woman and the best person possible to be a mother to these two precious girls. Keep your head up. I'll keep you and your family in my prayers. Thank you for sharing your life with complete strangers like me.

Stacey
CJ & Lexi (12/19/04)

Anonymous said...

i am so sorry to hear the news about eden. however, i know that you are both the most amazing parents, and she is the toughest little angel i have ever had the pleasure of knowing. you know that i love you all, and you have the love and support of countless others. only time will tell, so take it one day at a time. tell miss holly i feel her allergy testing pain -- i grew out of most of them though :) give them both a kiss from me.
love you all,
lisa

Meh said...

I am so so sorry that the news wasn't that great. Although we know you love her fiercely whatever the news was, it must still be heart breaking to hear it.

You have two beautiful daughters, may they live happy, wonderful, peaceful, beautiful lives.

much love to you and your gorgeous family

xx

Anonymous said...

Dear Holland and Eden,
You have the most amazing parents! I know you already know this, but I just wanted to say that everyone else knows it too.
Your mom and dad have been so wonderful to share your lives with family, friends, and many others who may have had preemie babies. I wonder if you realize that we all celebrate your accomplishments and even cry when the news isn't so great. I can't imagine how hard it must be sometimes for your mom and dad to get bad news, but I do know they are very proud of both of you! Please remember that all of you are loved by many, and any of us will be there in a heart beat if needed.
Give mommy and daddy big smooches and hugs for me will you?
Love, Mamma Jules

TBG said...

I am sorry to hear about your news about eden but hope for the best and like you said keep loving your baby and that is all that matters.

Great news about the insurance I am sure that is a huge relief. Good luck with the upcoming surgery.

Holland looks so happy playing with the puzzle. Congrats on sitting for longer that rocks.

About the allergies. There are 5 of us and we all have allergies. All 5 are allergic to milk. Three of us are allergic to Peas, Peanuts, Soy, Milk, Strawberries, Tomatoes, Oats, Wheat, Rye, & eggs. Actually my brothers were allergic to the yolk not the whites. I was allergic to both. We never had respirtory issues thankfully just skin issues and bowel issues. Also running noses but never real breathing issues thank god. I was also allergic to benadryl go figure. Over the years we have learned to tolerate the foods that we are allergic too it is next to impossible to get your children to follow a food list like that at school and with their friends and into adult hood. but I try to follow it some what. I dont really eat milk based items. Dont eat eggs often, stay away from soy but I still eat them on occasion. My brothers eat everything but milk. We all have huge milk based allergies. So does my mom and dad. Kinda bizarre. We went to allergists growing up and that was a big help in determing what we were alergic to and what we could not eat. My mom was really good about feeding us what we could eat everything was basically from scratch and she made 3 meals a day. God bless her.

Kendra Lynn said...

Dear Billie and John:
I'm so sorry to hear your news on Eden...it breaks my heart that your family has to go through such a tough time.
Please keep your chins up...God has been with you thus far, and I have no doubt that He will continue to work in your family.
You are in my prayers daily.
Kiss the girls for me.

Love,
Kendra

Anonymous said...

The courage of you, John, Holly and Eden has been an inspiration to my family and I. Please know that you all are constantly in our thoughts and in our prayers. Eden and Holly are both just so adorable!! Please know that everyone that reads these blog entries are rooting for you guys!
Steven Bee

got twins? said...

I've been reading your blog for a few months now...I've just never posted...From what I read you and your husband are very strong, and the news about Eden's CP are devestating to any parent...

I would like to invite you over to www.twinshock.net...It's a wonderful site for support and resources for twin parents. We have several members who have had micropreemies and some parents whose twins suffer from CP too...When you get a minute (kind of impossible raising twins ;) )check it out....

My thoughts and prayers are with you and your beautiful girls

Anonymous said...

Hi from L.A.-

i'm sorry to hear about the PVL. I did a lot of research on this when they thought my micopreemie had it (she's got a benign cyst), and I'm sure you know this, but even with that diagnosis things (dx/prognosis) can significantly change to age 2. Hypotonia can be easier to "fix', and the IVF connections board has some great info. on this in the board search. Long story short, with intensive EI, most gained significant tone to the point of it not visually affecting gross motor abilities. When you have time, you should read about those parents' experiences.

For high tone, a great alternative tx is rosemary in the bath. Right after, give a massage. Rosemary eases the muscles. As for allergies, there is this master healer in Miami who tunes in to engery frequencies over the phone and can tell you what things it is. If you belive that kind of stuff, he is the real deal. David: 305-949-2990. Best Wishes- E

Anonymous said...

When I read this, my first thought was what could I say that would be encouraging. It's another challenge that I believe will be won. We won't stop praying for all of you. God bless you. Connie Wilhoite

pattiroberts said...

Dear Billie & John,
I sit here tonight and, try as I may, I cannot find words to say that can "make it alright". Words are sometimes so hollow, and even though they are well-meant, can often bring more pain than encouragement. I'll certainly keep my words going upward and let the Lord continue the miracle He has started with Eden and Holland
We love you all.

Anonymous said...

happy birthday to you! happy birthday to you! happy birthday dear billie, happy birthday to you!
i'm so thankful to have you as my friend.

take care of that cold, get some rest, and drink your WATER!
love you!
lis

Anonymous said...

Billie,
I'm sorry about the news of Eden's dx. Eden has the very best parents to support and encourage her on her life journey. xoxoxox
I love you-all very much. And my heart is with you-guys always.
Love you, Laura

Anonymous said...

My thoughts and prayers are with you and your family.

Anonymous said...

Hi Billie, I lost the link to your website a month ago, just found you again via Tertia. It's lovely to see the latest pix of the girls, and how they are growing.

Thank you for sharing this difficult news with us. I know that you have been wonderful parents to H and E through all their challenges so far, and that you will find the strength, courage and positive attitude to help your girls with these latest challenges. They both are so beautiful, and have come such a long way already!

I believe that Early Intervention and therapies can make an enormous difference to outcomes these days, so it's good news that the PVL has been found now and treatments can be planned. I hope you will continue to receive excellent medical support, to help Eden realize her full potential. (Our own triplets had mild developmental delays, fully overcome by age 4. Sorry I can't offer advice from experience for your situation.)

Re: Holland, that's hard that she seems to have so many sensitivities or allergies. I hope that some of them will improve as she grows up, although I believe peanut is a life-long one.

My son has (only) a peanut allergy, and we have the Epipen for him. Happily we haven't had to use it in the past year and a half, but it gives great peace of mind to know that it's ready to hand in case of a reaction, and that it will provide time to get him to hospital. (Food labels are so much better than when I was a kid!) If the Epipen is prescribed for Holland, I would strongly recommend having two, one for home and one for your purse or diaper bag, to make sure it's always available. You can carry some Benadryl as well.

I will pray for Holland, Eden and all your family, for strength and serenity and healing. Wishing you all the best,
SheilaC
mom to 5 year old triplets (30 weeks)

21st Century Mom said...

I have just read your blog for the first time and my heart goes out to your family for the struggles you will have to deal with. Your positive attitude and ability to manage are admirable.

I do have a story to tell that I hope will keep your heart light. I have a nephew with CP who I expect is far more diabled than Eden. He has never been able to do anything physical - ever. Be that as it may he is one of the most joyful people I know. My sister and her husband have always recognized their son's joie de vivre and responded to and fed it and he as responded with a smile and a laugh that turn the darkest day to sunshine and warmth. So, although Eden may (or may not) suffer some physical limitations they will not impede her ability to fully engage in her life and to enjoy it as deeply and completely as any kid with no physical problems.

I wish you strength with whatever challenges come your way but at the same time I have faith that your lives will be full and rich and filled with love and laughter.

Anonymous said...

I hope the appointment today went as well as you hoped it would.

That one chick said...

I came across your blog through another site, I'm sorry to hear about your news with Eden. They are both beautiful girls!

I am so glad your insurance company is paying for your daughter's cochlear implant! I have one as well and I know that she will truly benefit from it!
My prayers are with you and your lovely family....

Anonymous said...

Billie,
I found your blog through Tertia's site.

My son was born at 27 weeks weighing in at 1 lb., 15 oz. He too had two bleeds. He was diagnosed with moderate PVL when he was a few months old. He's now 4 years old and is the light of my life. He has spastic CP, but making milestones everyday. He finally learned to crawl a few weeks ago. It happens, it just takes our special babes a little longer.

I'd like to also add that Darren speaks in full sentences, knows all of the primary colors and can add up to three. He's a smart boy, on-target for his age.

Good luck on your journey. Even if your journey takes longer than most, you'll make it. Together. I promise.

Best of luck,
Danielle
(MollyMae@gmail.com)

Anonymous said...

Re: the allergy thing. My son, who was born full-term (feel like I should add that for some reason), could go from sweet and snuggly to whiny and awful from day to day and had contact dermatitis off and on for his first year and a half. I finally took him to the allergist and I can't recommend it strongly enough. It was fairly painless, fast, and so informative. The things I ate in droves while pregnant (eggs, walnuts, and chocolate) are what he is allergic to! So, of course, he has been getting them through my breastmilk. The past month and a half have been a dream since I eliminated them from my diet and his! I hope you can get both girls tested soon (my insurance paid all but my $20 copay) and hopefully find out what is bugging them.

Also, from an earlier post, it seems like one of the girls (can't remember which had the rash from the sticky pads holding the cannula on) may have a sensitivity to latex. There are great, latex-free bandages on the market which would be very good to have on hand when your girls start the typical toddler crashing and falling.

Good luck! ~D~

Shannon said...

Can you please stop by my blog at http://palmersf.blogspot.com
I have just posted about PLV and I need to hear from other preemie moms.

Anonymous said...

I JUST WANT TO LET YOU KNOW THAT I FOUND YOUR WEBSITE ONE DAY AND I GOT TO READING EVERY MONTHS AND I HAD TO LEAVE A COMMENT ON THIS ONE. I AM 22 YEARS OLD MOTHER OF TWO CHILDREN ONE WHICH IS IN HEAVEN NOW. WELL ANYWAYS I JUST WANTED TO TELL YOU MY STORY. I WAS 15 WHEN I FOUND OUT THAT I WAS HAVING A BABY AND I KNEW EVERY THING WILL GO RIGHT HE WAS BORN WEIGHTING IN AT 8LBS AT 37 WEEKS BUT WHAT GOT ME WAS WHEN HE WAS 2 MONTHS OLD WE KNEW SOMETHING WAS WRONG WITH HIM. HE WAS HAVING SEZIRES AND HE COULD NOT EAT AT ALL. THE PUT IN A FEEDING TUB IN HIM AT 3 MONTHS AND SAID THAT HE HAS CP. AND HE COULD NOT DO ANY THING AT ALL. HE WAS BLIND, LOSS HIS HEARING, COULD NOT MOVE ON HIS OWN. WELL TO MAKE IT SHORT HE WAS HERE FOR ALMOST 3 YEARS. HE WITH TO THE LORD 11 DAYS BEFORE IS 3RD BIRTHDAY. I WAS JUST GOING TO TELL YOU THAT I KNOW HOW HARD IT IS TO GO THROUGH WHAT YOU ARE GOING THROUGH. I HAVE A 7 MONTH OLD GIRL NOW AND SHE SPENT A WEEK IN THE NICU BEFORE I TOOK HER HOME. SHE WAS 5LBS 12.8 OZ AT 36 WEEKS 5 DAYS. THANK YOU FOR LISTENING TO MY STORY. YOU CAN WRITE ME BACK AT FAITHMICHELLE08@YAHOO.COM AND I CAN LET YOU SEE SOME PICTURES OF THEM BOTH IF YOU WANT TO. MAY GOD BLESS YOU AND YOUR FAMILY THROUGH IT ALL. I KNOW HE WILL DO WHAT HE NEEDS TO DO.