May 13, 2008

Mia Update

We met the surgeon today that will be performing the surgery on Mia. Dr. Cohen is his name and he seems like good people. I figured I would write down some info that we have as we go along.

A full year of lock down. It is true. Since Mia will have her immune system suppressed, we are not supposed to go into public for about a year in order to try and avoid getting the baby sick. (I am going to need to get a plasma and a PlayStation for sure.) We can go out, but avoid germ infested public. We may be tearing out carpet and installing hardwood to maintain a cleaner environment...my knees hurt just thinking about that project. Maybe one of those air filtration devices to cleanse the air. I was telling Mimi that I was going to set up a booth at the front door that you have to strip down and then it sprays you with chemicals to disinfect. It would be funny to see if anyone took the bait.

No Ronald McDonald House. We are trying to plan ahead on how this is going to work with maintaining job, family and baby in hospital. We are too close for McDonald house free lodging. kids can't stay in the hospital rooms, (and thank goodness for that so we won't be tempted to try it.) We will have to farm out the kids when things are tough, and just make it work. It will just be crazy for a few months

We have been in touch with several families that have gone through this recently. It has been an enormous comfort to hear their story and just to get the ins and outs of what is going to come our way soon. One thing that we were a bit disappointed in was our social worker. Apparently this was going to be the key to making all sorts of things happen. Money was going to start falling from the sky sort of thing. Well, though she is really nice, she had no good leads on financial help other than stuff we mostly knew. This gal from Ohio who's child had recently gone through this had awesome help from her social worker. We will have to find out all the cool programs that are out there and just pass them along to the social worker.

So, the good doctor says that his gut feeling is still to have a heart transplant, but that he is meeting with 50 of his peers on Monday to discuss and decide on the best course of action. The strongest possibility is to put Mia on the donor list 4 weeks before the due date and to do a C-section if a heart becomes available before her birth. This gives us a nice cushion of time when the baby is in a safe environment in the womb, yet available for transplant. The other option is to wait until birth so that the baby can be observed to find out if the heart improves or changes outside of the womb in order to make possible other procedures than the transplant. We shall see. It would be nice to avoid transplant, which would mean no lifelong meds, but it is not likely. The procedure would call for one side of the heart to pump blood to the entire body while closing off the other side. There would be 3 open heart surgeries before the age of 5 and all are about the same risk as a transplant. I don't like the idea of coming back that often. It is encouraging that our surgeon has done over a hundred transplants. He did say that doing a C-section and transplant shortly thereafter has only been done three times in the US to date. Interesting. The great news is that they don't have to have a blood type match because newborns don't have specific blood types. They have markers, but basically size is more important than blood type for a newborn.

We are doing great, and feel more confident everyday. I will update again on monday, the day they take a vote on what to do.

14 comments:

The Eggett Family said...

Thank you for the update. It is absolutley amazing what kind of medical technology there is out there. It sounds like you are in good hands. We will continue to pray for baby Mia, and be sure to keep us updated. Love you Meem's, Keep smiling!!!

Jim Hutchings said...

I Love You

Suz, Nathan & Kye said...

What can we do? Can we offer our knees to help with the hardwood? Either that or we can take the kids to Samoa with us...
think about it.
We love, love, love you guys! We pray for you and Mia every day!

Rachel said...

Jason can help with the hardwood floors...we've done ours. Doug G. is king of installing flooring...I'm sure he won't mind me suggesting his help :) Thanks for the update. Baby Mia and all of you are in our prayers. I'm still checking on a place for you to stay in Seattle. I'll keep you posted.

Erin said...

It's great to hear an update! My thoughts and prayers have been with you and your sweet baby Mia. It must be overwhelming having so many hard things to think about. Stay strong and know that we are praying for you. Meems...love ya!

Coatney Family said...

I can't wait until Baby Mia is over here in about three years and she's running around putting my kids in full Nelson's Ellie style and we will say, "isn't it crazy that she had a heart transplant?! Who would have ever guessed!" I just know that she is going to be strong and vibrant and amazing and going to spend a long time with us on this Earth. C'mon! She's Mimi's kid! I'm so excited to meet her in person! Also, please "farm" your kids out to us. We love them!

Sheri said...

Thanks for the updates. I too am more than willing to help with your kids at anytime. You know they love Tyler and Jessica!! Rob would also love to help with ripping out carpet and all that!!! You're always in our prayers!!

Bown Bloggity Blog said...

big hugs, love you guys

Steven and Whitney said...

I've been patiently waiting for an update. I know you guys have a lot on your plates right now, so it is good to see how organized and informed you are becoming! Keep smiling and know we are all praying!

Carrie Hellewell said...

Can't tell you how much we are thinking of you guys. Good luck. We love you!

Sarah said...

Hugs, loves, and everything good that I could possibly send you guys :) I think about you guys all the time wish that I were closer to do more. Good luck with everything, but I know you're not even going to need it. There are so many people that love you guys so much that would do anything for you and I know that everything is going to work out. Love you!!!

keysha said...

I haven't visited your blog for a while...but I am so glad I did! You are going through so much right now, and I wish your family the best. I am sure you are receiving so much love and support from close family and friends right now.

I will keep your family and your sweet little Mia and my prayers. Please keep this updated; even though I'm sure that's the last thing on your mind right now.

Mimi, you are amazing (and it sounds like your husband is beyond amazing as well)!

Crystal said...

My Prayers continue to be with you and baby Mia.

I know how scary this is... but as you can see from the pictures I just posted on Noahs Adventure and from seeing Beckham's pictures, things do settle down and return to normal eventually. You just learn to wash your hands A LOT!! (and ask everyone if they are sick before you get together.)

Daily meds aren't so bad either once you get the hang of them and their little bodies have a chance to adjust to them. I got a watch with alarms on it that I could set to go off as a small reminder. This helps remind me that it's med time. The Children's Hospital's program (and maybe it's because he is on Cyclosporin) doesn't make him take them spaced out with his food. Just at 8am and 8pm every day. So it just becomes part of our routine.

Please remember you can call me anytime.

Much Love,
Crystal
Noah's Mommy (Heart Transplant 07.07.07 Original diagnosis Critical Aortic Stenosis and Mitral Valve Regurgitation)

Mindy said...

Thanks for the update. Baby Mia sure has a lot of people cheering her on. She will be strong like her awesome mom. Doug has installed a lot of hardwood floors including ours so I know he will be more then willing to help get it done, he also has some connections from the carpet store he used to manage, so just let us know. We all love you guys and you are in our prayer. Stay strong you will be blessed.