Wednesday, January 28, 2009
One of the MoMs on my multiples board got some pretty horrific news. Her five month old twin daughters are incredibly sick. A few nights back, her husband noticed that one of the girls, Sydney wasn't breathing. He did CPR on her and got her to the ER- she was blue. They were able to revive Sydney and told the family at first that she probably just had severe apnea and would need CPAP or something to that effect. Some how it comes up that the girls aren't reaching for things, aren't holding their heads up well... and the Docs decide there may be something else going on. Lots of blood work later, they found this Werdnig- Hoffman disease.
This is how Brook told us:
Both girls have been diagnosed with Werdnig-Hoffman disease. It is a rare genetic disease that is untreatable. We are going in Monday to test our blood as well to see if it is something we passed down to them or if it was a mutation they experienced.
They have the most severe form. Their lungs are going to slowly give out b/c the muscles will not be able to help them breath anymore. They are both on feeding tubes, oxygen at night and monitors. They will never be able to sit up or hold their heads up b/c their muscles just can't take it. They might never talk b/c they have to choose between using their energy to breath or to do other things and they instinctively know to breath. Their brains are fine and they do so well interacting with us and each other. They love to be read to and have toys in front of them, they just can't reach them and hold on to them to play with them on their own.
Jake and I are going to have to decide how far we want to take this...some babies can make it longer if they're given a trach tube and have a machine breathing for them. At this point we're not sure that we want that kind of life for our sweet babies. We have a lawyer friend who is going to help us draw up living wills so we don't need to make those decisions under emotional distress. I am going to look into taking a leave of absence from work to be with them, but we're not sure if we can do that financially at this point.
Our friends have pretty much 'circled the wagons' for us to help us take care of all of the logistical stuff in our lives so we can just be with the girls and enjoy our time with them. We're going to celebrate every moment we have with them. We have decided to not do anything to treat the scoliosis and other issues that they have b/c we don't want to put them through that. I'm not even sure how far we want to take physical therapy at this point b/c we want all of their energy going to breathing.
We are looking into family counseling just to help us deal with all of the millions of thoughts swirling in our heads. Jake is doing really well considering (thanks Lexapro!), I have been a hot mess since we were told. I walked out to the car this morning and just started bawling b/c there was such a beautiful blue sky and my girls won't get enough blue skies.
They are asking us to keep them away from too many people b/c even the slightest cold can do major damage to their lungs. It makes me so sad that they can't enjoy their cousins, they won't know what it's like to walk or swim or taste candy, there won't be huge cell phone bills and driving lessons and wedding plans.
Ok, I think that's all I can write for now...I need to compose myself. Thank you all so much for thinking of our family; your friendship has helped so much during all of this!
*Her babies - both her babies - are going to die before they reach their first birthday potentially in the next three months. We are taking up a collection to help with the financial side of things. There is a paypal account set up for them. If you click on the pink DONATE box (at the top of this post), it should direct you to the account we've set up for them. Please don't feel obligated to donate, but if you can it's greatly appreciated. The money will go toward a photography session with the family, paying their medical bills and to a charity aimed toward children with similar diagnosis.*
What if it were Emma and Mady? What if it were my babies that would never be able to smile? It's a heartbreaking story and my heart goes out to them and their family.
The girls slept straight from 11pm - 4:30am. Mady woke up, I gave her her binky and she fell back asleep. She was up again 15 minutes later and I decided I'd get the bottles ready. I came back upstairs and she was back out again. They made it to 6:30am! That's 7.5 hours! YAY girls! This whole week they have been sleeping alot longer at night. I'm trying not to get too excited as I know there may be some ups and downs, but I think we are saying goodbye to the nights of getting up every 3 hours. WOOHOO!
Monday, January 26, 2009
This is a good picture of Mady's hemangioma on her eyelid. If you double click on the photo and view it larger you can see the clear difference between her left and right eyelids. You can also see that she doesn't mind one bit! The one on her thigh is looking better after one week of using her new ointment. It did still bleed a little this morning. I'm hoping it will be completely healed by end of week. I'm a little worried about the one on her shoulder, which is turning dark in some spots.
This is Emma being a goofball!
Madelyn, already loving to read like her mommy.
The girls are very proud of their new ability to lift up their heads and keep it up! I still have to snap some shots of them standing. The looks on their faces is priceless.
Please visit the website below to sign up to walk with us for the March of Dimes Walk or donate to our team. Even if it's only $5, anything helps. Our girls were blessed with a medical staff and treatments that helped them get home to us - healthy and happy. Without the medical research and medications available today, we may not have made it to 29 weeks and may have had a whole different story to tell. We are hoping the doctor will give us the okay to take Mady and Emma out on this walk!
Family Teams are made up of friends and families walking together to celebrate or honor a baby in their lives. And many of our family teams walk in memory of a baby who didn't survive. These special teams remind everyone of the importance of the March of Dimes mission to help all babies be born healthy. We will be walking in honor of Emma and Mady, and our friends Gianna, Waylon, Wyatt, Ashlyn, Aubrey, Sarah, Matt and Camry. We will be walking in memory of Grady.
Pass this on to anyone you think would want to help!
-Loree, Christian, Emma and Mady