Oh my goodness I can't believe the last time I posted was right after Madi got her new heart, jeez I've really been slacking!! Sorry! Im sure most all of you already knew we were home via FB or word of mouth etc. but yes after 220 days we finally got to bring our baby girl home!! It was a very similar feeling to when we brought her home when she was first born, just so exciting and something we'd been waiting and waiting for! She hadn't even been to our new house yet so it was even that much more special. After all she had overcome, it was just a great feeling to walk through that door with her in my arms :)
That was two weeks ago already and so far so good, or so great, I should say! I cannot believe how much Madi has blossomed, it is truly amazing. I never really knew how much her heart failure had been affecting her until I saw her with a healthy heart. Up until now, Austin and I could hardly squeeze smiles out of her and now she's all smiles all the time! She has gone from taking two to three naps a day to only one and if she's not sleeping she's wanting to go here there and everywhere! The only problem is she hasn't yet figured out how to do that on her own so mom is getting plenty of exercise :)! She slows down from time to time to watch the newest episodes of Mickey Mouse Clubhouse but that's about it, otherwise she's busy trying to figure out how to get movin:). Since we've been home she's started rolling, cruising on the furniture, turning on her bum, saying Mama (not just Dada), scribbling with a pen, working on her sounds etc. etc. she truly has been given a new life. She has progressed more quickly than I have ever seen, isn't that just awesome! She's got a lot of work to do with physical, occupational and speech therapy but now that she's got a strong heart, all of the milestones will be a lot easier. She would probably be crawling already but she's still tryin to figure out what to do with "Leftie". This is her left arm's name bc it kinda does its own thing and doesn't like to participate so we've given Him a name:) It's a he bc he never listens and you have to tell him over and over what to do!! Hehe :) That said, her stroke affected side is doing better and better and getting stronger each day! She'll figure out how to make it all work for her just might not be as easy as it would be otherwise!
We had a clinic appointment a week ago and everything looked good on her echo, heart was functioning very good! On Monday she will go to the cath lab for her second biopsy which is where they actually take a tissue sample of her heart and then send it to the lab to check for rejection. The scale of rejection is 0, 1R, 2R and 3R. A month ago her rejection was 1R which is nothing the doctors worry too much about or even treat in addition to what she already takes twice a day to prevent rejection. If the biopsy is a 2R or 3R she would be admitted to the hospital for IV med treatment to help get her out of the 2 or 3 and back to 1 or 0. This is something we will monitor for the rest of her life, just not as frequently the further out she gets. They'll also be checking her lung pressures as she still has what is called pulmonary hypertension that is a result of her old heart. It's basically scar tissue in her lungs that we have to treat with meds and oxygen and just wait for it to get better over time. If she was an adult we could forget it, they wouldn't get better but bc she's so young and resilient the lungs should heal. I'm really dreading the cath lab on Monday though; we have to be there at 6:30 am which means leaving our house at 5:30, sending Madi to cath about 7:30, she'll be out at prolly 10:30, recovery for about 2 or 3 hours and then just wait till about 5:00 pm for the results! Whew, they are long days! At least we don't have to drive from Rock Springs to Salt Lake and back like we used to! That was even worse! Ugh. It also brings back way too many emotions going to the hospital I hate it! I wish I was stronger and could overcome them but I haven't yet, I'm praying about that one! A lot! I think with time and God's help it'll get better.
Anyways, that's what's goin on lately around here! I hope you all had a great 4th of July and enjoyed time with your family and friends. We enjoyed celebrating our first holiday outside of the hospital since Halloween! We're praying it's a trend for a long time to come :). I wanted to quickly thank all of you for the cards, gifts, thoughtful letters, messages, food etc. that you have sent! If I haven't sent you a thank you card in the mail please forgive me I appreciate each and every thing you all have done and it brightens my day! I have been blessed with amazing family and friends! Please pray for Madi's donor family as she would not be here if it wasnt for their precious gift and for Madi that her cath lab on Monday will go well!!
Love,
Tabi
P.s. sign up to be an organ donor :)!!
