Another Heart Year

I thought I would share with you all a little bit more about the past ‘heart year’ and another one ahead of us. All of you know about Abi and all that happened last year. Few of you know about my dad.

Last year, around this time, on a Saturday morning, I woke up to a text message from my sister saying my dad had a heart attack and was in a hospital. Not the best way to start your day. Fortunately it was a mild heart attack and they ended up putting 2 stents in. Couple weeks later he was back home with a tiny pacemaker placed in his chest. Couple months later he went back to get the pacemaker adjusted and some tests run and even though he felt great and was doing really well, it was obvious it won’t be long term and one more stent would be needed. They scheduled the procedure for January 12 this year. It usually takes only couple days from planting a stent for the patient to be sent back home, so my parents started planning their visit to North Carolina. They pre-booked their tickets and planned on being here March 11^th. On January 12^th, my dad went to see his cardiologist, they did another cath just to find out they couldn’t plant another stent and he would require an open-heart bypass surgery. Yes, you read that right. We just can’t get a break.

He has already seen the cardio thoracic surgeon, talked everything over and just this past Wednesday found out he will be admitted to the hospital in a bit over one week, February 22^nd and the surgery will be done on the 23^rd or 24^th.

Even though it’s a more routinely performed surgery, it’s still dangerous. The surgery will take about 3 hours and will have to stop the heart for some time. The good thing is, he’s still young, in a great physical condition and in good health, so the perspectives are really good and he should recover quickly, if there are no complications.

If everything goes well, they will be here May or June this year, to see Abi first time live (so far it’s been video conferences only and she’s almost 7 months old now).

So if there is still some room in your prayer books, on your prayer lists, whatever you have, I will appreciate if you squeeze him in and keep him in your prayers.

Art

Atlanta Again?

Today’s cardiologist appointment didn’t go as well as we hoped :-(

Last 3 days we’ve noticed Abi started breathing a bit faster. Well, most of the time it was ‘a bit’ faster, but sometimes the rate was double what it used to be after the surgery. Since it was just 2-3 days to the appointment we decided to wait until this morning.

The appointment started as usual. Weight check, Abi gained a bit over 1.5lb, which is great. Length check, she grew one inch which is good and saturation – 99% which is perfect. Then echo. Abi did great during the echo, watching TV and being fascinated with the monitors. After all this was done we talked to Dr. Greene. One of the things noticed on the heart echo raised some concerns and if not the additional information from us, maybe we would just watch it for some time. Unfortunately, it seems to be directly connected with the breathing rate. Basically, one of the pulmonary vessels that was cut during the repair 2 months ago, while healing is scaring inwards, obstructing blood flow from Abi’s lungs back to her heart. This wouldn’t be too bad for now, if not the fact that it increased the pressure in her lungs and heart, causing lungs stiffness, accumulating fluids around lungs and making her work harder to breath.

Dr. Greene, Abi’s cardiologist, discussed this with the team in Atlanta and they decided it wouldn’t be smart to wait even one month, so they will talk about it more, call us on Monday and most probably will want to see Abi on Wednesday next week. Yes, next week.

There are two possible ways to deal with it. If it’s only possible, they will try to fix it with a cath. If they can get to this place, they will inflate a small balloon in this part of the vein and this should resolve the issue. If it’s too dangerous to get there with the cath, or impossible to get there, then they will need to do another open heart surgery :-( They will have to open her up again, put her on the by-pass machine, stop her heart and repair this vein.

There is no comfort in knowing this surgery would be simpler than the first one; the risk is the same; the pain is the same; her fear will be the same.

Today, with Dr. Greene we were looking at her scars and talking about how wonderfully she healed.

She just healed.

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