Two months later

Just a quick note. Tomorrow morning we are taking Abi to another cardiac follow up appointment; second after the surgery. Last one was one month ago.

Abi started breathing a bit faster past couple days, but she is also moving more, growing, reaching for everything she sees.

Hopefully everything is fine. Please pray for a good report.

- Posted using BlogPress from my iPhone

Kissed by Angel

I hardly even notice the birthmark on Abi's forehead anymore. It's barely visible. It usually becomes more pink when she gets worked up or mad :) 
I haven't checked it before, but today, I went online to learn more about them... Honestly, some pictures of babies with birthmarks on their bodies I found made Abi's very insignificant, to say the least.


What are birthmarks?
They are small salmon-colored marks most often found on the forehead, eyelids and back of the neck. They don't need treatment because they usually fade as the child grows.
In general vascular birthmarks are the most common and are caused by irregularities in the capillaries or vessels that supply blood to the skin.


The kind Abi has between her eyes (among other names) is called... ANGEL'S KISS....

Wow, kissed by an angel... It makes you wish for one too, eh?

Good night,

J.

Snow and hunger

So be it. Abi is like a bear before winter.. eats and falls into hibernation. If she wakes up tonight, I'll be surprised (well, not so much to be honest).. Her last meal was 8,5oz of milk with 5 teaspoons of cereal in it. 1 hour later I had to make additional 2,5oz because she was still hungry. By 7:30pm she was sleeping.


While waiting for dear hubby to finish work, I watched Grease 2. If not for young Michelle P. I would throw out the movie, that I actually own...


After that, rather dreadful movie, I decided to get some fresh air and document today's unique,at least for the South, weather conditions.
In case we won't get snow here in the next few years and we are still living here, I would want Abi to see at least pictures of it.. :) On the second thought, we could always go to Poland....daa!

Good night,


J.

A Mother’s Perspective

Sometimes I wonder what other people think about heart parents and what they have to go through with their CHD babies.. How to describe the daily struggles, feelings, emotions, fears and tears?

I found this beautiful poem written by one of the heart mamas (Stephanie Husted) who captured “it all” perfectly. Literally every single word describes what Art and I have gone and are still going through...

'You passed me in the shopping mall…

(You read my faded tee)

You tapped me on the shoulder…

Then asked…”What’s 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 her…(I’d waited so long)

It’s knowing that I need to help her grow strong…

It’s making a hospital home for awhile…

It’s seeing my reward in every smile.

It’s checking her sats as the feeding pump’s beeping…

It’s knowing that there is just no time for sleeping…

It’s caths, x-rays and boo boos to kiss…

It’s normalcy I sometimes miss…

It’s asking do her nails look blue?

It’s cringing inside at what she’s been through.

It’s dozens of calls to her pediatrician…

(He knows me by name…I’m a mom on a mission)

It’s winters homebound…and hand sanitizer…

It’s knowing this journey has made me much wiser.

It’s watching her sleeping…

her breathing is steady…

It’s surgery day and I’ll never be ready.

It’s handing her over…( I’m still not prepared…)

It’s knowing that her heart must be repaired…

It’s waiting for news on that long stressful day…

It’s …praying…it’s hoping…that she’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 the need to remember we’re 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’

J.

A Mother’s Perspective

Happy Half Birthday!

j.

Guess Who's Sleeping?

Mommy?.. No! Daddy? ... No!  Abi? - YES!!!!!

She has made a tremendous improvement in her sleeping and eating patterns. She only wakes up once at night to eat now.

She drinks 5-6 ounces with her eyes closed and is good for at least 5-6 hours! I'm just one proud and rested (well I still need to get up before 6am to go to work) Mama! :)

Way to go, Abi...

J.