Sunday, February 14, 2010

Happy Valentine's Day!

I did it again.. I accidently went too long between postings. I apologize, especially to Madison And promise to do better! (and now I have way too much to say..)

Happy Valentine's Day to everyone!
Isn't this so fun!? There are hearts everywhere! I love it! I love that the entire world is celebrating this holiday with the symbol of a heart. I can't help, but think that we as heart moms and heart families might feel this holiday at a deeper level. Today has actually been a little emotional for me. I keep telling myself.. this is silly, it's only Valentine's Day. But, I will never take the meaning of a heart for granted.

** I wanted to post our Valentine Card that we sent out, but I seem to be having trouble. (ggrr!) I'll recruit some help and add it tomorrow. (gee whiz!) If I have your address, yours is coming in the mail.

Today was also fun as we delivered Valentine cookies and chocolates to our friends. Valentine's Day has definitely become my new favorite holiday!

Here is a little update on Maddie: Madison has continued to do absolutely amazing! At her last appointment (appointment #12), Dr. Everitt kept watching her. As she was watching her, I could tell that she was thinking about something. After a few seconds, Dr. Everitt started laughing and said, "I don't mean to stare. It's just that Madison is doing so well and everything has turned out so perfect. It reminds me of why I do what I do everyday." She was right. Everything has turned out so perfect with Madison. We are so blessed and so happy! She has also continued to gain weight. Maddie now weighs 19lbs. 3 oz. and Dr. Everitt DC'd one med. We are down to 12 meds per day.
(I'm sure our pharamacist will be bummed that his work load is decreasing.. )

So here are some things that we are struggling with.. (and I'm trying not to worry). About three days after this appontment, Madison's mood has changed. She has become whiny and extremely needy. She wants to be held all of the time, but doesn't seem comfortable when I am holding her. She doesn't have any symptoms that she might be getting sick. This behavior isn't like her at all. It does worry me because this can be a 'heart failure' symptom, BUT she has a perfect heart. So, I should be able to check heart failure off my list and move on. But I can't. Mark and I go through our 'possible rejection' checklist numberous times each day. It's driving me crazy! This past week, I have spent all day with a stethoscope around my neck.

A couple days ago, I did call Emily (our transplant coordinator) and explained Madison's symptoms to her. Emily was a little concerned. She gave me a couple other symptoms to watch for and asked that I keep in touch with her. I hope that this is just a phase that Maddie is going through. Heck, maybe she is teething?? Something so simple that doesn't cross the mind of a heart mom.. instead we chase our babies around with stethoscopes. Our poor kiddos.

To make things worse, today is Sunday and Emily called me. What? Who gets a random phone call from their doctor on a Sunday? I don't think Primary Children's should be making phone calls on Sunday's... (isn't that a rule somewhere..) It only worries the parents! Anyway... Emily was calling because Dr. Everitt would like to see Madison on Tuesday morning. (Because of the holiday tomorrow, Madison was going to go 10 days between appointments.) I think because of my phone call to Emily then Dr. Everitt wants to see her sooner. Also, Madison's Prograf level is still not at the correct level. We have increased it at every appointment. Anyone else have Prograf level issues? Should I be concerned?

Take Care. I will post pictures tomorrow.


Family Scads said...

You sound so much like me - concerned over ever mood change. Even after two years, I still watch Beck like a hawk. I can't help it. I guess that is a mothers job! All I can say is 'go with your gut feeling.' If you feel something is not right, then it's better to be safe than sorry!
Don't worry about the Prograf level, either. It took over a year to get his level at a stable place.

So glad that Maddie is doing so well! Can't wait to see pictures!

Kaidence's Mommy said...

Prograf levels can be a crazy thing at times. One thing that we learened with Kaidence is that when she gets sick, her Prograf leves go sky high. At that high level she starts vomitting and all the other fun stuff. It takes holding a few doses and then cutting it in half for a few weeks to get them back down. I too was so paranoid about the heart failure thing, especially if she bacame sweaty at all. It gets better with time, but mommy's sometimes just know things. Maybe we are both crazy, but I think we earned our right to be! So happy to hear that she is doing so great!

Amber said... are such a great mom and that is why you worry! Hang in there....Madison is luck to have you has a mom. You are wonderful! Good luck tomorrow at her appointment, I hope all goes well. Thanks for the cute Valentine card and treat. It really made me think differently about Valentines. Thanks for sharing your hearts with us!

Amy and Cody said...

Glad to hear all of the good news and see the cute new photo with the fun valentine hearts!

Ryan and Susie said...

I loved your Valentine, we have it on our fridge. Thank you! It's beautiful. I'm not sure if this helps, but I know Madison and Olivia are the same gestational age and Olivia has had a rough couple of weeks teething with her molars. She just wanted to be held and didn't eat that much. Today her mood totally changed and I looked in her mouth tonight and the molars are about 90% through and she's feeling much better. She devoured an entire burrito tonight, I haven't seen her eat that much in one sitting in weeks! I hope all is well with Madison,just stick with your Mommy instincts. You're a great Mom.

Amy said...

I am so happy to hear about Madison's great health! It truly is a miracle to have her so healthy! I am grateful for modern medicine! About seemed like the first year was ALWAYS changing prograf. I asked Daniel's nephrologists why and they told me that weight change and other meds play a big role in the Prograf level. I have noticed that now that Daniel is down to his "Final 3" (we started with about 12....not nearly as much as you!) Anyhow, we rarely have to change prograf levels. We are down to labs once a month instead of every week and every other week. So it does get better! Ya hate seeing her get poked so much, huh? Thanks for the update! (I don't know if you remember us? We met you guys once just after you were married.....I hope you don't find it odd that I comment! A stranger!)

Becca said...

I am glad to see her doing so well. I worry every time Ellie sleeps to long or if she's not sleeping long enough. It's easy to worry about every little thing. Hopefully, you can get the Prograf levels where they need to be.

Becca-Ellie's mom