A Mother's Perspective

A Mother's Perspective (by Stephanie Husted)

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 watching her 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 in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow

This is a poem that I've seen on some of the CHD blogs and wanted to share it...

post-op check up

It has been 2 1/2 weeks since Darla Jane's surgery and she really is doing great.  She had her post op check up today and the Dr and NP were really happy with how she is doing.  She has gained enough weight on just 20 cal. milk, her incision is healing well, and her EKG looked good.  They did notice a little bit of fluid in the left lung on her x-ray but said that is really common post-op.  She is taking a pretty good dose of Lasix, which is used to reduce fluid retention so that should help.  They also decided that little miss is not quite ready to give up her favorite accessory and will be on oxygen full time for at least another month and then we will reevaluate where she is and how she is doing with that. The Dr said that it is not a surprise though with her rocky road, oxygen wise up to this point.  We figure if her needing oxygen is the extent of our worries, we'll take it.

We really would like all of you who have been following her story to know how thankful we are for your positive thoughts and prayers going out for her, and us. 
We would love to know all of you who are checking in on us...please post a comment, say hi, and leave Darla Jane a little note.  My amazing aunt is putting together a little book for our little miss and it would be so special to include your notes and for her to know how far the love and concern for her reaches.  Thank you, thank you to all of you.

wass up?!

hello to all of our followers... sorry we haven't posted much lately, but really it is good that we haven't. That means that things have mellowed out around here. I was informed that I can still post pictures every day so that all of her adoring fans can get their Darla Jane fix. I can't promise daily posts, because even though she is doing better I am still a mother of 4. we do have a little bit of exciting news, and it comes from our oh so favorite machine, the pulse/ox. This tells us her oxygen saturation, which is the top number. We can keep is quite steady in the 82-87 range on 1/2 liter of oxygen. And the bottom number is her heart beats per minute. The 117 is a pretty average number for when she is awake, and happy. When she is sleeping it can go down into the 90s and when she's mad...it can hit above 150 or 160. Don't mess with her. :-)

We have Darla Jane's post op cardio appointment on Wednesday so I will be sure to post after that.

yummy

We started little miss on rice cereal this week and. yummy. she loves it.



doing better.

each day with Darla Jane seems a little better than the day before. She is still fussier than normal but we do get her to smile, and she will let us put her down now.
Some things that are new since we've gotten home...is her cute little nose turns blue when she drinks her bottle. (And not only her nose, but her whole face and arms turn blue when she is mad) We've also graduated her to her big girl bed. I've been asked if I sleep a little better now that she's in there, and the answer is not really...I have the baby monitor in out room letting me know when she makes any noise or her pulse/ox machine beeps. But she seems to like it. And at least one of us can sleep while the other is taking care of little miss.
And she likes best sleeping on her side. Over all we are headed in the right direction. Just seeing this cute girl with a smile on her face makes the cranky times and the long nights seem not quite so bad. And her incision is healing up pretty well too...

adjusting...

little miss has been having a bit of a hard time adjusting. the first night home she did not want to sleep...but she did want to cry. A. LOT. :-(and yesterday she just wanted to be held almost all day.
last night was better. it took time for her to get to sleep but then, she only woke up a couple of times and went to sleep pretty easily...
I talked to the nurse who told me we could alternate with Tylenol and ibuprofen to help manage pain, so hopefully that is helping her.

oh happy day!

sorry for the no posting today but that is all because....WE ARE HOME!!!

I am still in amazement. 4 days after open heart, reconstructive surgery and we are home! What an amazing miracle. What a strong girl. What a blessing in our lives!

I was trying to help little miss this morning because she couldn't eat, she was getting sedated for her echo. So I couldn't post this morning.

They did the Echo and then I was needing to hold her all afternoon... So I couldn't post this afternoon

And then we were getting discharged. So, there was no time to post, all day, until now and I am sitting at my computer-AT HOME- with Nathan on our couch holding our little miss.

We have SO many things to be thankful for.

One of those things being all of you who included Darla Jane in your prayers.

:-) !!!!!!!