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.