Saturday, August 30, 2008

Finding Courage through Sharing - Aug 2008


CMCblogcarnival

The topic for this month is memories and memory markers. Share about something that trips a memory in your journey with your child or children, or just a memory that is special to you. The memory can be happy, sad, or anything in between. If you don’t have time to write specifically for this prompt, feel free to share a post that matters to you from your archives. I’m looking forward to seeing what you have to share this month…

Michelle's post about her family's NICU experience got me thinking about our NICU experience. Our twins were born prematurely and were diagnosed with Twin-to-Twin Transfusion Syndrome. I wrote a series of posts about our experience a couple of months ago. Since the topic for today is memories, here is a glimpse of the experience in pictures.

This is a card that the NICU nurses made for me the morning after the boys were born (they were born at night). It meant so much to me that they took the time to do this, I am crying just thinking about it. I spent most of that day alone in my hospital room, as dh was in the NICU with the boys (where he should be!). I was unable to get out of bed for 24 hrs, so I couldn't visit them in the NICU. These are the only pictures we have of them from that first day.

Here is a chart the nurses put up on Cuddlebug's crib, I'm not sure why they didn't do one for Bearhug. I loved how it described him as a person, with his likes and dislikes. I enjoyed doing Kangaroo care with both of the boys when they were stable enough for it.


We didn't really start taking pictures until they were 9 days old. By that point, Bearhug was off of the CPAP and Cuddlebug was out of the isolette, they were able to co-bed, and we were able to hold them both. Here is our first family picture, along with each of us holding them. They were still attached to monitors and had feeding tubes, so we had a lot of "equipment" around but at least we could hold them :).


They spent their first Father's Day in the NICU, so the nurses made these cards for dh with their little handprints / footprints. Aren't they cute?


Here are a few more picture of the boys. The little orange tubes are their feeding tubes. They used to like to work their arms out of their blankies and pull out each other's feeding tubes, talk about teamwork LOL. I like how in this one, you can see Bearhug's little toes sticking out from his blankie :).

A close-up of their precious little faces. That's Bearhug on the left and Cuddlebug on the right.


Here you can see the little stuffed tigers we got to keep them company in the crib :). Those are appx beanie baby size, so that gives some perspective on how little the boys were.


These are the things I thought about when the boys have gone through their some of their more difficult times. Whenever I started to feel overwhelmed with trying to help our boys overcome the challenges that are part of autism, I thought about how they came into the world. Given the survival odds for babies with TTTS at the time, the fact that they are with us is nothing short of a miracle. Two miracles :). (And 3 1/2 yrs later - a third miracle!) When I thought of that, my feelings of despair would quickly turn to gratitude, and I felt immeasurably blessed to even have the chance to go through these challenges with my boys, because we very nearly did not have that opportunity.


TTTS is a disease of the placenta that affects identical twins with a shared placenta, in which abnormal blood vessels connecting the two babies develop in the placenta. When this happens, blood flows out of one baby and into the other, which if left untreated is life-threatening for both twins. In our case, the boys weren't diagnosed until delivery. They were born with >25% size difference, with Cuddlebug weighing 4 lbs 1 oz (he was the "donor twin") and Bearhug weighing 5 lbs 8 oz (he was the "recipient twin"). (back to top)

7 comments:

Dianna on August 30, 2008 at 8:58 AM said...

Thank you for sharing! Sitting here in tears. Beautiful boys. The Father's Day cards really touched me.

Bobbi on August 30, 2008 at 11:17 AM said...

Wow. What an amazing story. The pictures are great. I'm so glad that everything turned out good and you have your adorable little boys! What a nice memory to have.

www.frogparenting.blogspot.com on August 30, 2008 at 2:32 PM said...

There are many things in the post I can relate to -- I also had my daughter in the NICU, and the very first time I saw her it was in a polarid (sp?) in a Early Mother's Day card-- she came the day before Mother's day!
ah, memories!
Thanks for sharing your precious memories with us!

Jen on August 31, 2008 at 11:14 AM said...

Oh, what an amazing journey your twins have been on. I'm also a mommy to 2 daughters who spent many days in the NICU. In addition, I'm godmama to a precious miracle named Hailey who lost her dear sister, Mary Carol, to TTTS. Your story has touched my heart. Thanks for sharing it through Finding Courage Through Sharing.

Jen @ Unique But Not Alone
mom of Grace & Meghan, preeclampsia survivors as well as children who have Alpha-1 Antitrypsin Deficiency, a genetic disorder of the liver/lungs

Kim on August 31, 2008 at 8:19 PM said...

So nice to see that the hospital took such good care of you. I love the little notes and things they created to help ease the stress for you.
((hugs)) and best of health to your little ones !
Kim ~ editor

Childlife on September 1, 2008 at 12:46 PM said...

Oh, aren't those NICU nurses angels? They did some pretty amazing things during our stay too -- memories that I will always cherish. Those little hand-print cards they did for you are just precious! It's so wonderful to see your boys doing so well now -- warms my heart :)

So very glad you joined in this month, Danette!

~Michelle @ In The Life of a Child

lonestar818 on September 1, 2008 at 10:37 PM said...

Thanks so much everyone for your kind words. The NICU nurses were awesome and it meant to much to us, still does even after all these years.

Michelle - thanks for hosting this every month, this is the first month I found it and I'm finding everyone's posts so amazing and inspiring!

 

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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.

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