Jan 10, 2009

6 MONTHS OLD...A true miracle!

This little girly made it! She is a whole half a year old!!!! Some times I feel like she is much older than that! Has it really only been six months? My life has changed so much!! In fact, not many things about my life resemble how it was previous to her. She is my little miracle and I would trade everything I did/was before for her in a heart beat. As time goes I am sure things will settle back down, but for now it's all about this little peanut. Her brother and sister love her so much they don't seem to notice how much time is spent on her. Ellie is still bit traumatized from me being gone for so long, but she is now finally starting to see that mommy comes back after going to the hospital.


Mia has lost pretty much all of her hair... except for the tiny tuft on the top, and little around her face. Her new nickname, (if she didn't have enough already) is Alf. Do you remember Alf??? I LOVED Alf- and Punky Bruster, and Small Wonder... but that is another blog. I guess one of the drugs makes her hair fall out- GREAT! When we made our little stroll through the ICU, I knew people were going to mention that her hair was gone. If you have read this blog for awhile you will know that I cried for hours the day they shaved her head. Well, after all of that heartbreak (and a titch of anger) it is gone anyway... except for her Alf hair. John keeps threatening that he is going to get the clippers out- I know he won't because of the reprecussions from cutting Jensens hair when he was a baby. In summary, sorry I made such a big deal about her hair... I really really thought it would stick around. She sure makes one cute Cupie Doll though.

Hellooooo medicine!!! Can you believe we have to give her these many medications? It's crazy! For a mommy that rarely takes medicine herself, this is a hard pill to swallow!! he he. Luckily, they are slowly tapering off. Hopefully soon she will be completely off of her steroid. Then we can lose those "Steroid Baby cheeks". The neoral (box) is the medication that gives her the "bushy eyebrows" unfortunately that is here to stay... unless we switch her immunosuppressant agents. I wish I knew what med would be best for her in the long run. I have heard arguments on both sides for which drugs to give her...I wish I knew what her body agreed with the most. The med she is on now promotes body hair growth (which I don't love) but it could be worse I guess. The other drug causes diabetes in some kids. There really is no perfect drug. During my last appointment I was questioning the doctors about how soon until there is a homeopathic immunosuppressant... they laughed at me, of course. I have heard these meds described as a wonderful medical breakthrough (yes!- because look at the little wonderful person in my life), and also described as drawing up AIDS in a syringe. I guess both are true. You wipe out the immune system (like AIDS) but life can be continued with a transplanted heart. There is still so much to learn about the medications- I feel like I need to head down the research path just to help discover a med that would enable her to keep her immune system, yet still trick it. When we were getting trained to go home one of the pharmacists told me to wear gloves when I draw up her Neoral. She said, "you wouldn't want any of this to come in contact with your skin because it could absorb into your system... and that would be really bad." HA! I had to laugh at her warning. No worries that I am going to be giving it to my precious baby multiple times a day for the REST OF HER LIFE!! Just send me out the door with that parting advice! It's not safe. I knew how harsh the drugs were from the getgo, but do you have to remind me? ;-) It's the reality of our lives- and it is 100% necessary for her, and I am slowly coming to grips with it. Wouldn't it be wonderful if there was a such a drug?

This is Mia's native heart. I have had these photos for awhile, and decided it would be alright to show you her heart. When I arrived at the pathology lab it had already been preserved and tests had already been done. They pieced her heart back together for me to show me just how big it was. Her heart should have been the size of her fist, this as you can see is much bigger. The section that appears to be missing on the top left is actually still inside Mia. They attached her angel heart to that section of her heart. It's all too incredible!!


The walls of her heart were really thick, and you can see how dilated it was. They also showed me the valves- you can't see them very well, but they are there. If it were not for an entire room full of people in that lab, I would have been sobbing. I held it together- but I wanted everyone in that room to know how proud I was of that little heart. As I held her tiny heart in my hands I thought of all of you and how many people prayed for that little heart... to keep fighting... to keep beating...just a little bit longer. Thank you so much for sustaining this little heart. Thank you for loving her!! Holding my daughters heart in the palm of my hand opened my eyes to how loved I truly am. I will never doubt the tender mercies of the Lord in my life. My friend was holding Mia in her room with a perfect angel heart beating in her chest, and I a hospital length away with her native heart that never had a chance, but tried so hard. For me, that moment was the summit of God's love, and I will draw from this experience for the rest of my life.

32 comments:

The Whittingslow Family said...

omg! i love to see that mia made it to six months old!! that is kind of a gross picture of mias native heart! well im so glad to see that mia is doig well and she is making it!!
love,
SUPER GIRL

jayna said...

She is a miracle baby! And we are so happy for your family! Yeah Mia!

Brimaca said...

It all is such a miracle. She is so amazing and I'm grateful to have been a part in all of it.

Brimaca said...

A very small, small part. :)

Danielle said...

It feels like decades have passed, but happy half birthday to you! We will continue to pray for your fam.

Love,
Boo and Carlos

Lykins Zoo Keeper said...

Okay you need to stop making me cry. ;) To literally hold your child's heart in your hand...unbelievable. It is simply amazing Mimi. Can't wait for Mia's 1st birthday post!

Diana & CJ said...

I'm so glad that part of the road is some what over for you guys. She is adorable in every way. Her smile, chubby cheeks & hair.

Sheri said...

Happy 6 months old, Mia! It is amazing and such a miracle that her heart sustained her for so long! She was/is a little fighter!

Shelley Eggett said...

Amazing - I honestly couldn't have told you I even knew what the picture was if I didn't know Mia's story. I'm so happy her heart fought long enough to wait for her angel heart to come. What do they do with her old heart now? What an amazing little baby you have been blessed with Mimi - I just love her. It's so fun to watch her grow and so amazing to see her thriving.

All those medicines are definitley overwhelming I'm sure. As far as the hair growth, I guess you can be glad she's a blondie. Maleah was born with back hair and ear hair and it WASN'T blonde. Luckily it all fell out, Poor Girl :)

Well I'm happy you're back home. Thank you for Sharing Mia's life and heart with all of us.

Love ya tons- Shelley

Sarah said...

Happy 6 month birthday Mia!!! That is wonderful and I can't believe it's been 6 months already. She is so, so cute and I love the pigtail on top of her head, it is adorable. I love that you are calling her Alf, you guys and your nicknames are my favorites. You are too cute. The pictures of Mia's heart and your thoughts about it is amazing, Mimi. Absolutely amazing.

Cristi said...

YAY!!!!!

Janet said...

Oh my word! Sending lots of blessings from South Africa. Wishing your little miracle a long and happy life.

Katie said...

Happy Half-Year Mia!!! Wow, it's been an amazing 6 months, hasn't it!?! So glad she's doing well but my heart aches that she has to take all of those meds. Thank goodness for that NG tube... That pic of her heart, I'm simply in awe of it, almost as big as the lab tech's hand! Poor little girl, what a fighter!!! And what a moment for you, holding it in your hands. I'm sure you'll never forget it. Thanks for sharing that with us. Your heart journey has been so remarkable and I just love reading your posts, you're awesome Mimi! We've truly witnessed one of God's miracle's with Miss Mia :)

*~Sarah~* said...

What a miracle! I cant imagine holding my childs heart wow! You are such an amazing example for me and such a strong mom. She is so adorable! Thanks so much for the wonderful Christmas card! I loved it.

Nat said...

Mia is one incredible baby! She is beautiful and it is great to hear that she's doing so well. And I am so impressed by how you and John have handled everything. You are awesome parents.

Analisa-creator of hairblingzcutethings said...

no words..just tears again! love you and your amazing lil' peanut!

Talia said...

Happy Six Months Heart Sister. I am so happy to hear Miss Mia is doing so well. That picture of her heart takes my breath away. What a precious girl.

Kirstin said...

Happy 6 month birthday to that adorable, squishy cheeked, happy perfect baby. The smiles you captured in the post below are priceless. It was so crazy to see her heart! Thanks for the post and updates again. I have fallen in love with Mia through this blog!

Shila said...

Wow Mia you have gone through so much. That was so interesting to see your heart! Thank you for sharing your pictures.

Cindy said...

I can't believe how wonderful Mia looks! What a difference from a few months ago- and hey, she's chubby everywhere!!
What an amazing experience for you to hold her heart. I have never seen a real heart before- and certainly that one has got to be the most incredible one I will ever see.
You are such a wonderful Mommy- and such a strong testament to the miracles that prayer can accomplish.
Love you guys!

Stephanie said...

Mimi..you are absolutely amazing! I am thankful you allowed us to follow you and Mia through this journey because Mia has changed my life. She has made me approach each day differently. I feel as though she is a part of my family and I have never met her..what an adorable little girl you have.

Happy Birthday Mia!!!!

Amy said...

She is such an amazing girl! Can't believe she is 6 months old! I have some wonderful news to share....and I can't seem to find your email address...we are expecting a baby in July! Guess what his/her due date is?
07-08-09!! Unreal, huh? I've felt connected to your wonderful family from the start and when I heard the due date and double checked my story to verify Mia's birthday I just shook my head. Pretty nutty. Hope all is well with all of you!

mbishopp said...

can life really change in a heartbeat? you have already answered that.
i still love those squishy cheeks of hers.

Lisa D :) said...

I think the photo of Mia's heart is absolutely beautiful, it made me cry! I have been following Mia's story, and praying for her and her family -- but have never commented before. I wanted to say today "HAPPY SIX MONTH BIRTHDAY MIA!!!"

The Butcher Family said...

Mia now has two beautiful hearts! I can only imagine the emotion you felt when holding her native heart...I haven't even asked about seeing Annabelle's. You are so strong and your testimony is amazing!
We love y'all and pray for precious Mia daily! It is an absolute JOY to watch her grow!!! Happy 1/2 year birthday, babydoll!

Love and heart hugs~ Rebecca

Becky said...

What a tremendous experience holding Mia's heart in your hand. Mimi, you are so strong. I only knew you for that year we were in the same ward together at Ricks, but I feel so uplifted by your strength.

Liz said...

Thanks for sharing such personal things with all of us. Mia is such a miracle and a sign of God's love. You are an amazing family!

Beth said...

Mimi, you need to either publish this blog or write your own book. You write so beautifully. Those pictures of her native heart are amazing. Can I just tell you that I love reading your blog.

Jennifer said...

Miracle indeed! That's so awesome that you got to hold her heart! What an experience!!

The Schnepper's said...

Your baby Mia is soooo sweet! And what adorable siblings too! Our Macie was never on that much med at home WOW! Macie is 2 yrs 3mo out from TX, and I can't believe how normal life has become.The first year was pretty tough, but after that I don't know where the time has went. Hang in there Mia will be dancing around with her big sis soon.
God's Blessings
Michelle

MamabearMills said...

WOW is all i can say!

JIll said...

I found your blog from a friends blog. My daughter was born with a heart defect and a liver defect. Her heart was so bad the liver doctors wouldn't do the transplant without the heart being fixed and the heart doctors couldn't fix the heart completely until the liver was transplanted. Well long story short, they fixed her heart in stages and got it strong enough to have her liver transplant. I love this post how you went to the pathology lab and held the heart. I did the exact same thing with my daughters liver. Some people did not understand why I had to do that, I guess to actually see how bad it was and to see what a miracle she was and how she was able to live with such a damaged organ. I love reading your blog and I cry because I have felt those same feelings and concerns for my own daughter. Kaylyn has had 5 open heart surgeries and a liver transplant. Thank you so much for sharing your sweet angel with the world, You are an awesome, inspirational mother and family. I would love to send you some of my daughters pictures too. If you would like to email me I would love to share them with you. jillybob13@gmail.com
BTW, Kaylyn my daughter is now a very healthy 13 year old. You can't even tell she is sick, well besides all the medication she is on and the doctor appts. she has, to look at her she is beautiful, Just like your little angel Mia!