CHD Awareness Kickoff Week!

Today is the start of CHD Awareness Week. I am reading a book to Celeste's first grade class and we are making valentine/get well cards to take to the patients recovering from heart surgery at Cardinal Glennon and Children's. The grade is also collecting toys, books and other items to give to the kiddos.

Please tell someone you meet today Connie's story.

I read a poem last night on John's carepage that was written for him but rings true for most CHD families.
You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a a CHD?"


I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.


What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.
---Stephanie Hustead

Connie had his appointment yesterday with the nurse practitioner at Dr. Brady's office. They upped his overnight calories to 24 cal due to a small percentage of weight gain in the past two weeks. We go back in a month. They are still happy with how he doesn't mind the tube in his nose and with the amount of vomiting we're seeing. Yesterday was kind of weird because he kept throwing up after feedings but he never threw up any milk, just phlegm. The phlegm was bright yellow, too. We couldn't figure out why it would be that color. If he has that again today I'll call the doctor to see what she says.

Update on Big Sis

Connie's big sister, 3 year-old, Mary Kathleen, had a follow-up today with the dermatologist to check her "birthmark" and decide whether or not a biopsy would be done. Since there has been no change in the last two months, Dr. Sanchez feels comfortable waiting and checking it again in a year. Of course, we'll go in sooner if something changes. She feels like it is a very unusual birthmark, kind of like a mole on a mole. She thinks that the sebacious (oil) glands that are normally under the skin are for some reason on top of the mole. If left alone, we'll probably see some changes in it when she enters puberty. She said right now she doesn't feel a biopsy is medically necessary based on what characteristics she sees and that it would be traumatic. At an older age, when the procedure can be explained to her, we may do it then just to find out what it is since it is so unusual. Thank you for your prayers!

Connie was weighed again today and is up another 1.5 oz. He's 22 pounds even now--such a big boy! Tomorrow he goes to Dr. Brady (GI doc) for a follow-up. I'll update again after the appointment.

Please say some prayers for another heart family we know, the James'. Their daughter, Bailey, who I've mentioned before, is getting ready for her big Double Switch surgery like Connie had. It is set for next week. She has had several operations already to get her heart ready for the big one. They are hopeful for her to finally get her big repair and nervous at the same time. Please pray for safe travels and a quick recovery for Bailey and her family.