Saturday, November 5, 2011

A Happy Week

We had a really fantastic week and we think it's really important to celebrate the great times! There are always things to worry about and you could easily let worrying about the parts of the week that were hard rob you of celebrating the good parts. But I'm making a choice to sometimes stop worrying about everything, stop trying to think through future problems and just take a moment, even a whole day or weekend, to just be grateful for where we are and how much God has done for us.

On Wednesday we found out that our wonderful Dr Swinford personally went back and forth between the medical directors at Aetna (insurance) and Memorial Hermann (hospital) and they actually agreed to 1) let us have our transplants at Hermann and have all follow up care given by Dr Swinford and 2) to waive all our out of pocket costs so that we will pay nothing for the transplants. The first thing is what I have been working super hard at with letters and phone calls and so forth. Ironically, I had all my letters ready to go and be mailed out the next day. So they never even needed my letters- the decision was made without them! Nonetheless I am glad i wrote my letter because it really helped me to work out for myself just how important staying at the hospital was and why it mattered so much to me. The second thing about our out of pocket costs just blew me away- we never mentioned that, I had just assumed we'd be paying our chunk. So it's just a miracle- an amazing feeling that we get to stay at the best hospital for all of us and that we have the added blessing of less financial burden for us.

So the next step is donor testing which Al and I will begin the process for next week, knowing it'll take at least a month and more likely 2. So that's our goal for Nov and Dec. We hope to be at a place in Jan where we know if either or both of us are donors and make an official plan for a transplant date then but presumably in either Feb or March. Dr Swinford is really positive but she is really honest so did talk to us about what a big deal transplant will be- for an infant, and when one parent has just undergone surgery AND when there is another infant still on dialysis in the family. It is going to be logistically at least the hardest thing we've ever done. We'll have more Drs appt at first and lots of new issues over immuno-suppresant drugs etc. So we have been warned and while I'm sure a few months from now I'll be writing a post about how hard it is, right now we just know it is the answer for the future we want for our children. It'll be a lot of short term difficulty but for an amazing long term gain. And transplants will get easier with time. Within a few months after Max has been transplanted, we can go out more, wear masks less and start to feel like a part of the world again. In fact, Dr Swinford said by next Halloween hopefully we'd have kidneys, be at a stable place with our meds and can be out trick or treating! Which definitely brought a smile to our faces!

As if that wasn't great enough news, we also found out at clinic that at least 'kidney-wise' the babies are doing the best they've been doing since we took their kidneys out! Their electrolytes and labs all look great. Addison has been anemic for months and her iron levels are finally what they want them to be. Dialysis is actually working really well for the babies and Al and I are doing a good job with meds, feeds and so forth! And I will say, that is like 95% Al. He's done an amazing job. He is up until 1am every morning because he has discovered the perfect way to give them their iron so they don't throw it and he has this whole system and it's totally working. He's home every day taking care of two very medically complicated babies so to get a report that they are doing even better than when they were in the hospital being cared for every day by doctors and nurses is such a huge compliment to him. I'm so proud of him!

They are also both growing really well. Pretty much like every meeting we had with doctors in Jan-July, they told us they probably won't grow well. Their kidneys leaked protein so they probably won't grow well, they are on dialysis so they probably won't grow well. They need to be on growth hormone since they have no kidneys and kidneys release this so they probably won't grow well. In fact, my mom has now wasted 100s of dollars on buying clothes ahead in a small size because they were preemies with kidney conditions- surely they'd be small?! Well, Max and Addison keep amazing the doctors with their growth! We really watch height closely because weights can be inflated by fluid and what not but... when Max was a couple months old we has in the like 1% for his adjusted age and now he's like 16th% so he actually gaining progress. And Miss Addie is just remarkable with her size as she's somewhere around 70% for height which if you've met Al and I, you'd know is pretty incredible because we are certainly not tall! So they will still get the growth hormone soon (insurance finally cleared it) so they continue to grow while we wait on transplants but they are doing so much better than any of us ever expected!

So it's been a really good week for the babies. They are doing really well at home and I think a year from now we're going to be in a whole new place. And that's a lot to be excited about! And tomorrow we're going to baby dedication at our church and we're really excited that we get to publically thank God for taking such amazing care of them and commit to him that we'll continue taking the very best care of them that we can!

And now an adorable photo from Halloween:


Grandma Jean said...

We are so happy for all of you! God has certainly blessed you, Al and those adorable babies. And they are both so cute and happy. We love you and keep all of you in our prayers.

Love, Grandma Jean

Lindsay said...

Steph, I loooove their halloween pic! SO CUTE! I can't imagine how tough the transplant and the aftermath will be....please know that you have so many people who love you that will be praying for you and pitching in whenever possible!! Keep me posted on when all of that takes place because I would love to help with meals or anything you need!! I love seeing how great the babies look, keep up the good work on the blog. (And kudos to Al for all of his hard work!)