Tuesday, January 6, 2009

Her Highness...........

So full of smiles lately. Does the heart good to see.
The big girl in her bumbo!

Jody, Kirk, and Erin came for a visit this past weekend


Um, is she really sick??!!!



Lindsay will get her labs drawn in the morning to determine if she is ready for rituxin. Most likely won't be a problem since she received some blood about a week ago. Some good news is is that I did see her numbers today and the medicine IS working! Now, all we have to do is refrain from getting transfusions, and we should be able to get these antibodies down hopefully within another month or so. For example, the number that we want to decreased started at 89 I believe or something close. On the 23rd of December, blood was drawn and the number was 55! The hard part is that the number should be below 12. That's right, 12. GULP! Well, we have a ways to go but at least we have proof that the meds work and we just need to keep her healthy enough so that she can get it as often as possible which is about every two weeks. That was the goal anyway until she got an infection, had potassium problems, etc. So, rituxin should happen Wednesday or Thursday now. Also, I asked one of the docs about starting cereal and she said normally that would be fine but with hypoplastic babies and the decreased blood flow with only having half of a heart functioning, the perfusion to the belly isn't desirable and that is why most heart babies have problems eating. So, for the best interest of Lindsay, I have adapted to the fact that we will just have to cross that bridge when the time is right. Thrush looks to be improving already. I gave her a bottle at her 6pm feeding and she took it all! Go girl! She was sleeping for the majority of the rest of the feedings for the night, so they were tubed.
I also wanted to thank each and every one of you that posted uplifting words for me today. I know that I sounded pretty down but believe you me, I have been much worse! I just haven't blogged it all before. Some days I just feel like I'm going to explode and without JR here in person to vent to, I plastered it on here for all of the world to see! :-) Keep all of the positives coming this way and in your prayers throughout the day, please include that this medication will enable us to find Lindsay's perfect heart! Heart blessing to you all!
Love, Suzie

8 comments:

Alison and Rich Lee said...

Such adorable pictures. I cannot believe all of her hair!!! She actually has the cutest "bedhead" hair-do ever!!!

Love ya!
Alison

Evie's Story said...

Good morning Beautiful (both of you!:-)
Pictures are adorable as always. She looks simply amazing and is growing so big.
Thanks for your vulnerability and transparency with your blogging. Lets us know better how to pray!
Have a wonderful day and get lots of snuggling in!!
M

Trisha said...

We are wishing so hard for Lindsay's happy ending!! It will be so great to know that she is getting her heart and she can go home!! You are such a positive person and the way you deal with all of this is inspiring. Thank you for always keeping up up to date!

Hope you have a great day today!!
Trisha

diana said...

Your right, Lindsay looks so happy and healthy you would never know that she is ill. Soon the perfect heart will arrive and she will be able to go home.

Anonymous said...

She justs keeps getting cuter! I know it is hard to keep upbeat, and you certainly have done a fabulous job, but please know we are all trying to help carry your burden with our prayers. Also,that you are all loved very much. You and JR are incredible how you are handling everything. Stay strong.
Love,
Nancy & Steve

Maggie Geiger said...

What a beautiful Princess! Just can't get over it! You are right, it is hard to tell that she is sick.
I hope that you are having a better day. None of us can even understand what you are going through, so PLEASE vent! That's what friends and family are for. We want to be able to give you encouraging words, even if that's all we can do.

Love,
Dan,Maggie,Ben,& Alli Geiger

Elaine said...

What absolutely beautiful pictures. Look at all that hair...she looks just like a little girl sitting up in her bumbo!!

As I tried to say yesterday (I hit post and it went poof...where do those go anyway...grrrr) we WANT you to vent! VENT, WHINE, CRY...whatever keeps you sane. We can't do much from here, but we can listen and cheerlead! As many others have said before me, I would have been totally nuts long ago, just from sitting in the hospital 101 days...forget all the work you are doing to advocate for your daughter. I know you just long for "normal"...life as it used to be. We are all praying for that for you as soon as possible. Just know that you are doing an inspiring job, even on your worst days...

I am going to try to come for a day next week...I wrote you on Facebook about it.

Love and hugs, Elaine

Chris Babiasz said...

Suzie, Be comforted in knowing you are doing all you can do, you are leaving no stone unturned.
To those of us who read this blog you have become our hero. You are an amazing person be it mother, friend ,daughter whatever your role and I for one realize how strong you are,how much you and your family are loved.
I am praying so hard,
Chris Babiasz