The Latest on MC…
This was taken after church on Sunday, instead of a nap!
Mary Clare refuses to swing in “the baby swing” now. She insists on swinging, everyday, in “MA-CAN-LESS-ES” swing.
Thankfully, we have had an uneventful year health-wise for MC. She continues to grow and function just as any other “normal” two year old. (Her little half-heart has been fine. It’s the hitting, screaming, raging tantrums and NON-sharing that I’m having the most trouble with, which make my own blood pressures rise.) Lately, however, I have noticed that her breathing is getting heavier, her lips a little bluer and she gets tired a bit quicker than she would a few months ago. At first I chalked it up to a possible cold, playing harder and trying to keep up with McCanless, but now I have allowed myself to realize that it is, in fact, my little blueberry’s half heart. I have had her oxygen saturation levels checked once a week for the past 6 weeks, and she is consistently running in the low 80’s. Her norm has been typically high 80’s.
I know it is coming, and I’m actually ready to have a time frame. It will mark the third and final surgery. The end, for a while. Hopefully.
The “tell all” for the time frame for the third stage surgery, the Fontan, is typically weight gain. She has hovered around 25 pounds for forever, so it seems. Her cardiologist would like her to be 30 lbs, but if her sats continue to drop or if another issue arrises, they will continue with the third surgery. We have an appointment on November 17 and will have many questions answered then with possibly a catheterization date. I find peace in knowing that the time is approaching and I welcome the new year and getting this phase behind us. Until then, we’ll continue swinging in the big girl swings, dressing in all things pink and sparkly, learning how to share, and laughing with our funny little blueberry! She has the best belly giggle!
12 Comments
Katie Allred on October 14th, 2009
Kerri,
She is so dang cute! I love seeing the photos of her on your blog…I’m glad you did a little write up on how she’s been doing. I’ve been wondering if you’re seeing any signs or not lately with needing surgery soon. Keeping her in my prayers for a great appointment in November! Hope you’re enjoying fall 🙂 We somehow skipped that season, it feels like winter up here!!!
Elizabeth Hall on October 14th, 2009
Kerri,
Mary Clare is such a doll! We will certainly keep her close to our hearts as you all prepare for your visit to Charleston! She definitely sounds like another two year old that I know…
hope y’all are doing well!
Love,
Elizabeth
Rachel Medlin on October 14th, 2009
Thanks for the update, Kerri. I, too, will continue to pray for all of you, especially as your November appointment draws nigh. You and Mel do such a wonderful job of keeping on in the raising of your little “blueberry” doll (she is adorable!) and I commend you both. I had nothing more to deal with than what today is labeled ADHD, and that was difficult for me and my son. Your daily walk is so much more!! Thinking of and praying for you often. Take care! Love, Rachel
[email protected] on October 14th, 2009
Hello!
Your little Mary Clare is absolutely adorable! My daughter also has HLHS and she is post Norwood~ looking to have her Glenn soon. I love reading about babies like yours who are doing well and sooo cute! Will keep your daughter in our thoughts as she approaches her 3rd surgery. Jenny
bmarchant on October 14th, 2009
I know it’s hard to see signs of her half heart. It’s hard for me to hear (or read) you speak of her 3rd surgery when she seems so perfect already. You are so brave to stand tall and ready and for accepting what life has to offer with a grins and belly giggles!
Erica May on October 14th, 2009
What a doll! I really wish that she and Emerson could see each other more often! WE are also dreading the Fontan! It does help to have a timeline! I know we don’t want to do it, but maybe they could have their surgeries around the same time and we could be there together for support! Then, we could all take our Disney trip 🙂 You guys are always in our prayers!
love,
Erica
Rebecca on October 14th, 2009
Oh, I love that little (um, excuse me, big) girl! Thanks for her update, Kerri. Miss Mary Clare stays in our prayers. Wyatt says the sweetest prayers every single night asking God to keep all of the heart babies well and to give Annabelle a kiss and a hug and “tell her that I love her”. Our hearts are forever changed and your precious little blueberry holds a very special place in them!
All our love~ Rebecca
Bobbi on October 14th, 2009
Kerri we have so enjoyed living close to you and your sweet girls. Please know that a prayer is said nightly for MC and Mccanless. She is such a blessing and ray of sunshine.
KATE on October 14th, 2009
I love our sweet little blueberry girl!!! She is growing up way to fast. I can’t believe it! Do let me know when the appointment is – I’ll go with you or I can keep Canless!! I can’t wait to see the girls!! I miss them everyday!! Tell them I love them and give them lots of hugs and kisses!!!
MC is always in my prayers – and sweet Canless!!
KATE on October 14th, 2009
I want this picture of MC too!!! I absolutely love it and NEEEEEEEEED it in my house!!!
jan tompkins on October 14th, 2009
Kerri, what a wonderful surprise to see sweet Miss Mary Clare swinging away on the “big girl” swing.
She is so precious and Ann and I love checking in on all of you.
Don’t forget that Ann is in the PCICU and would love
to see you guys if you could swing by. Of course, I’m not even sure of what her schedule is, but if she’s there, she’ll want to see your sweet little “blueberry”. God surely has blessed you and all of your family and especially blessed MC with a wonderfully loving family. You are our “heroine”!!! You “Just do it”. That is amazing and we admire you and Mel.
Have a wonderful October!! Looking forward to seeing the girls in their costumes.
Love, Jan
Andrea on October 14th, 2009
She is just too precious!!! I just want to squeeze her… although she would probably not be too happy with that. 🙂
It stinks when they start to decline. I am hating Owen’s sats dropping into the 50s and he’s ON oxygen.
Hopefully you’ll be able to get through the winter and maybe push the fontan off til the Summer?!
At the same time, it’d be SO nice to get it done and over with.
We’ll be praying for that appointment in November!
Andrea