40 hours… 40 hours until our next cardiology appointment. The appointment where they tell us about heart function, blood work, lungs, general prognosis, arrythmias, and growth. The appointment that could get us a ticket back to the hospital or a directive to ‘live our lives’…. I have been a hot mess all day. I am not sure how to describe what I feel- fear, stress, hope…proverbially- my knees hurt from all the praying I have done. My mind hurts from all of the conversations I have had with God the last few weeks… Sometimes I feel mad at Him and others thankful, sometimes I am confused and others I feel like I have a Father who is holding my heart in his hands and telling me its going to be alright.
If you are the praying kind, I am asking each of you to pray for this baby that we love so much. If your not, send some good vibes our way or meditate on it or send us healing energy… whatever you do we could use all the help we can get. My sweet pastor, Ann Cover of South End United Methodist Church is one of those women who you could talk to for hours about nothing and everything all at once. She asked me yesterday “what’s the worst that can happen on Monday?” What a question; one I have thought about quite a bit over the last three months. I had never said the answer out loud but here’s what it is-
The bad things:
1) depressed function, no better or worse
2) Arrythmias, new or continued heart block
3) Abnormal labs
4) Abnormal/wet xray or plureal effusions
5) Valve regurgitation worse than before
6) Other new crappy scary findings
The worst thing:
Severely depressed function, congestive heart failure- anything leading to the need for transplant
But then I told her the best things that could happen-
Really good appointment
1) Function is normal
2) There are no more arrythmias
3) labs look perfect
4) Xray looks great
5) Valve regurgitation mild or less
6) no new crappy scary findings
The left ventricle is growing miraculously!
So, please pray and vibe for a miracle and hope for, at the very least. good things.
You know, life is so precious. Today I had the opportunity to visit with sorority sister’s from college at a baby shower. Our dear sister, Jenn will welcome a baby boy in October. There, I watched as my sisters passed around little Alpha Tau legacy, Avery and met the little girl of the party host who was a pretty cool kid. I also met an expecting adoptive mother with a sweet spirit and light as she spoke about her little guy in Korea. I then traveled to our heart buddy, Tyson’s first birthday. I met Tyson’s family for a second when I was pregnant with Paul and we were touring the ICU. Meg and Justin are both tall and gorgeous and as we toured the ICU they were smiling. I remember thinking how can they SMILE and be gorgeous in the ICU? And now I know why (well at least the smiling part)… I also got to spend time with two families whose little ones lost their fights with HRHS plus other things. One of the mothers is now expecting a little girl (heart healthy) she is due on Paul’s birthday! One of them has another heart son who must be about 7 or 8, he was running around the party, playing with every heart healthy kid there. He ran into Dan as he was climbing UP the slide, just like a typical kid. I watched another family play on a blanket with their heart healthy daughter and little boy with Transposition of the Great Arteries. He was crawling around, sitting up, and trying to put things in his mouth. I cried as I headed home. I cried for those two incredible families who lost their boys. I cried in fear of Monday. I cried tears of joy for all these incredible families in my life and tears of joy for getting to be married to my AMAZING husband who is just a shining star in so many ways....lots of crying and then I stopped. My child went to his first birthday party today. He’s eating baby food. He laughs out loud- A LOT and has a whole lot of people who love him. What a day…
As I settle in to snuggle with Dan and eat some mac and cheese I am reminded that we are given this thing called life, where loving one another is our only real responsibility…. while its so hard to think about loving and losing , loving and living is worth more than I could ever describe. So, I am going to spend the next 40 hours doing that- loving and living (and still praying for a miracle).