Funny how plans can change in the blink of an eye…
Yesterday, I called Central Scheduling at MUSC to bump up Mary Clare’s cardiology appointment. Really, it was for my own peace of mind. Her O2 stats have been running in the low 80’s lately, and a few others have noticed her heavy breathing, so I thought it may be time just to have a check up. To my surprise, the nurse with whom I was speaking, placed me on hold to discuss this with her cardiologist. I thought, “Well she must not have much experience with HLHS babies, because this is somewhat normal as we approach her Fontan. If I was that concerned I certainly would have called him myself. He will explain that HLHS babies do this and a November appointment will be fine.”
Besides, her Fontan will be in 2010. Such a very long time away.
What a slap in my face and a huge reality check when the nurse told me that he wanted to see her “tomorrow.” So today, October 22, we’ll pack up and head to Charleston. I’m not exactly sure what will happen, but my mommy instinct tells me that we will have a time frame for her third surgery. Today, I feel ready to tackle this. Yesterday, I kept thinking how awful it was that I haven’t allowed myself to see the signs sooner. That I haven’t wanted to “go there.” Her breathing has become very labored at times. Her little blueberry hands and feet are always cold. Last week on her nature walk in pre-school, she couldn’t go 100 yards before she stopped to rest. Her teachers had to carry her the rest of the way. She naps. She sleeps longer.
When she was born and we knew she faced the three surgeries, the Fontan was the least of our worries. It was the surgery she would have “when she was older” and it seemed so far away. Time slips away quickly and , in a way , I’m glad that I often “forget” that she is a heart baby. I thank God everyday for my little blueberry and all of the happiness she brings to our family.
8 Comments
pwodzisz on October 22nd, 2009
I found your blog through another heart mommy. I get such encouragement when I read through blogs of little girls that are doing so well. I know it is not easy to keep up a blog, but thank you for doing it. It means a lot to those of us that are just starting our journey. I hope to one day ‘forget’ that Hope is a heart baby.
Andrea on October 22nd, 2009
Time does slip away. I’ll be praying for a smooth visit and hopefully you’ll have some time before the Fontan. I read that her sats are in the low 80’s and was like “Wow, that’s fabulous!” We too forget about the heart defect at times, even with oxygen and feeding tubes. Then the “slap in the face” happens.
Rebecca on October 22nd, 2009
Praying for that sweet baby girl! You are such an incredible mommy, Kerri, and both of your girls are so blessed to have you looking out for them.
Love to you and kisses to MC~ Rebecca
Catherine on October 22nd, 2009
I recently found your blog and first let me say your girls are just adorable. My 8 month old has HRHS and he will have his Fontan surgery sometime next year. We’ve been told around 18-24 months. Reading your blog today just made my heart beat faster for a moment. I hope the appointment goes well today. I understand the not wanting to “go there”. It’s one thing to know our children will need another surgery…it’s a completely different emotion once you know the date. Just know I will say a prayer that the appointment goes very well today.
jan tompkins on October 22nd, 2009
Kerri,
So surprised to see a new post and even more surprised that you are headed to MUSC with MC.
God bless all of you as start another journey with your “little blueberry baby”. She is a treasure.
God loves you all and so do we. Best of luck … you are in our prayers and thoughts today and everyday.
Jan
Bethany on October 22nd, 2009
Thinking about yall! I know, I always try to put off thinking about the Fontan, even though I know eventually the day will come when we will face that, too! We’ll be praying for sweet Mary Clare!
Terri Woodham on October 22nd, 2009
Thank God for another good appointment-It’s something we all have to face. Mary Clare seems just as perfect as McCanless; we tend to forget that tiny little heart is not as perfect. The doctors will give the love and care she will need, and God will be watching over her.
I love you all with all my heart and I’m so thankful God gave me a beautiful daughter as you! You will never know just how proud I am of you and the remarkable mother you’ve become. MOM
bmarchant on October 22nd, 2009
I’ll be thinking about you today! Call me if you are in the car on the way back home around 4pm!