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.

:-) !!!!!!!

more news from day.

little miss and mama got to snuggle together again today. even 3 days is a long time to go without holding your baby. We were both happy. Even though Darla Jane doesn't look like she is.
And thank you to the member of the darla jane fan club that sent the giraffe and balloon! There wasn't a name on it, so we aren't sure who it was from...but we wanted to let you know that she loved it! Little miss played with the balloon for about 15 minutes and then snuggled in with her new stuffed friend for a nap.

first night on "the floor"

...and she is doing great! I guess her sleep was a little disturbed with vitals needing to be taken and then an x-ray early this morning. And she got quite mad, despite the morphine, when they pulled out her final 2 chest tubes...but they are out now!
So hopefully she gets lots of good sleep today and rests up for her echo in the morning. That will tell us how the blood is flowing and how her heart is handling the change in the plumbing. There might not be much to update today...and if there's not, for today, that is a good thing.so for now, she is peacefully sleeping... with some friends to watch over her.

best news I've heard all day...

and it came in a text message from Nathan, with this picture attached.Can you guess what is happening?!?
They were moving our little miss OUT OF THE CICU!!!
And then he sent this next picture to show how excited she was!

Ok, so not quite a smile, but as close to one as we've seen her have since before the surgery. Now, in case you are just joining us and you weren't aware...Darla Jane just had reconstructive, open heart surgery 2 days ago! 2 days! And now she is stable and doing well enough that she doesn't need to be in the intensive care unit any more. AND they are planning on pulling out her final two drainage tubes tomorrow! She will definitely be put into the SUPER ROCK STAR status...

And if you didn't believe that prayers are answered before...you might want to rethink things. I'm just saying.

final med is gone and central line is out!

soooo...as far as what needs to happen to keep us from staying in the CICU, we've checked them all off of our list. Nathan is at the hospital with little miss right now, and he should even get to hold her today.
Nobody has actually told me this...but I'm thinking that the move out of the CICU will be tomorrow!! I can't believe how well Darla Jane is doing. She is just 2 days out of MAJOR open heart surgery. She really is a rock start. Prayers really work. And I really can start to relax. :-)

morning check in.

When I am in a sleep room I always try to wake up and be in with Darla Jane by 6: Then I am able to see her for about an hour as well as check in with the night from the night nurse before the shift change, and then we have to be out of the CICU from 7-8.

This morning when I went in...this was the report. They now have her off of 2 of the 3 meds she needs to be off of before she can leave the CICU. They also tried to get a peripheral iv in, which they couldn't (surprise, surprise). The iv she has now goes into her heart and she can't leave the CICU with that. If they are not able to get another iv in, but the Drs want her to be able to still have an iv access...that might keep us in the CICU longer. While that line is in, we also aren't able to hold her. So they are going to talk about that at rounds. To see if the doctors even need to have that iv access. If they do want to keep her with that iv access, I would rather them keep it in, and not be able to hold her then them going through what needs to happen to get another iv...and then not even be able to place it.

An image to look at.

I found this online today that might give you an idea of Darla Jane's heart, and what happens in the 3 different surgeries. The main difference with this image and hers is the HLHS heart shows an underdeveloped left ventricle, however our little miss doesn't have a left ventricle with blood flow at all.

(click on the image to see it enlarged)

more alert.

little miss is awake a little bit more now, and when she is...she doesn't have quite the drugged over look to her. hello miss pretty blue eyed girl. She has even been able to drink a couple bottles of clears -and- milk is currently being defrosted for her in the fridge!

she was even able to get a few visitors today.

cute ones...the day went pretty smoothly. we are trying to work some of the fluid out of her lungs and she's needed to be suctioned a few times. so she screams, and turns blue. I'm not so much a fan of that. and I also had a scare, although the nurse didn't seem concerned, when there was quite a bit of blood coming out at they removed her neck line, while she was scramming and therefore turning a nice dark shade of blue. We've been told that because of the way the blood flows from the upper part of her body, when she gets mad especially, that will happen. nice.

but overall it's been a good day for our little miss.

peace.

darla jane finally seems a little bit more at peace. although she had been sleeping a lot, her breaths seemed so forced and when she would wake she seemed agitated. There was some adjusting of medications and a switch to a different pain med and little miss is feeling better. Still sleeping and more calm. And for the brief moments she wakes up (as long as the medical staff isn't bothering here) she is more herself and not so much dazed.
she also has another monitor off of her head. Pretty little thing isn't she?
her mom is also feeling more and more peaceful as the day goes on and darla jane relaxes.
again, prayers are working. thank you for every prayer and thought that is going up for our whole family.

team darla jane

sent from geegee's phone as they walked in honor of darla jane

at the intermountain healing hearts walk today.

2 more down.

i love when they start taking things out. it is a sign that little miss rock star is going in the right direction. She just got her neck line out. which is nice because it looked really uncomfortable, coming out of her neck....or the area between her head and shoulders since she doesn't really have much of a neck. She was NOT happy when it came out and she got mad, mad. And when she gets mad, because of the new way the blood flows her whole upper body turns BLUE blue.
Not a look that a mother likes to see. But once she calms down it goes away.
(she also got her catheter out but shhh don't tell anyone because she might not want to know we've been talking about that) But that is good because they don't feel the need to measure, as closely, her urine output.

this morning.

i put on my favorite shirt . and walked in to see this...
No breathing tube...she it doing well breathing on her own. Needing more oxygen then we did at home, but she needs it to help recover.

This next picture is beautiful, I got to see her open her eyes...but sad at the same time because she looks so helpless, and medicated. She is doing amazing though and was even able to drink a few ounces of pedylight.

go darla jane! go!

covered in tubes, wires and a bow in her hair.

little miss is in the CICU all hooked up to about 10 different things with 5 different concoctions being pumped into her. and the game of balancing medications and volumes to get those numbers right where they want them. but she looks good and seems to be comfortable.
let the recovery game begin.
ready. set. go.

darla jane is my hero.

and so is Dr. Burch...
things went well with her surgery.
she's done.
we get to go see her....

like always, the next day or two will be keeping a close eye on her and her all her vitals but she is a rock star. as well as had LOTS of prayers being said for her. thank you. thank you. thank you. for all of the prayers being said for her. (they are working)

echo done. everything looks good!

They have finished with the echo, that checks the blood flow through the heart, and everything looks good! The Dr will start closing things now, we should see him in about an hour or so. Annie told us he likes to make sure everything it clean and there aren't any spots that are "oozing". That is why it takes a little bit of time.
She is doing good. of course. I was never worried ;-)

moving on.

Just wrapping up the modification and little miss will soon come off the heart/lung machine. They will then do an echo to check and test everything...if it all looks good they will be able to close her up. The incision won't remain open like last time.
She is still doing great.

heart/lung bypass.

she is now on the heart/lung bypass machine. The Dr has removed the sono conduit, which is the artificial tubing that she had. and is getting ready to start on the "Glenn modification".

slow go...

but she is doing well.
little miss is not on the heart/lung bypass machine yet, they are still working to get where they need to to do the repair.
BUT she is stable and ok.

her chest is open.

Annie, our nurse practitioner, just came out. They have her chest open now. The surgery had a bit of a slow start because even the head anesthesiologist had a hard time finding a vein. If this is going to be the hick up she gives us, we'll take it. She has not been put on the heart lung bypass machine yet.

surgery is about to begin.

9:20 am.
the surgeon is washing his hands and about to get started.
continued prayers.
please.

*right after I posted we were told that the incision has been made. it has begun. We will get another update in an hour. And I will try to breath.

the day of the glenn...

ready or not, here we come!We were up at the hospital at 6am to check in, where we had to wait until 7:30 for surgery time. We tried to entertain little miss, and even got her to sleep for a little while...

Then it was time to hand her over to Dr P. (the anesthesiologist), who just carried her back like she was his own baby. It is always hard to see her go back to the OR but we kind of liked it this way. It was like we were such good friends, and felt so comfortable just letting him walk away carrying her down the hall. They took her in at 7:30 and we were told that it would take an hour and a half to get the prep done and surgery started...we will get the update when surgery has started and we will update here.

sooo...

we are home from the pre-op shenanigans at the hospital. Note to self...next time we need blood drawn call in the iv team FIRST and skip the lab people... Saves A LOT of screaming that way.

We have surgery scheduled to start at 7:30 am. Which means we need to be at the hospital at 6. Early morning for us. We should get updated about every hour throughout the surgery so be sure to check in on the blog for updates, we will post them there. We don't know how long the surgery will go but the NP told us it will last through the morning so I would think lunch time would be the earliest we'd be done.

Also we won't hold our breath but the NP told us she has seen kids go home 7 days after the Glenn. She did, in the same breath, say she'd also had some stay a month post-op. But we all know darla jane likes to set star patient records :-)

Thank you everyone for your continued prayers, love and support.

surgery date reschedule..

but it's not because of us this time... and there is no cause for concern

while sitting at the hospital, recovering from the cath we got a call from the cardio surgery scheduling department. Because of new babies that are being born, the dr is needing to rearrange his schedule. And because Darla Jane is doing well, we are more flexible with our date. It's not a big change, we are now scheduled for Friday, the 9th...So that gives us one more day of snuggles, laughs and prayers before her big day.

star patient...as always

the procedure went well. we were able to watch the video of what they did with the dr. and he said he would put it on a disk for us. so when we get that, i will have to post it for anyone interested. but the stent got placed where they wanted it too and she stayed stable throughout the whole procedure. we will be staying the night like we thought...BUT on "the floor" instead of in the icu! so that is good news too.
we will just call today a warm up for next week. little miss remembers how to be the "easiest hlhs patient" and her mom was able to work on not being to anxious (mostly).

they are getting her settled in recovery and then we will be able to go in with her.

Pre-Cath...

Darla Jane is, as I type this, down in the cath lab. We won't get any updates during...just a low down when she is all done. So while we wait I thought you might like some pre-op pictures.

Here's little miss with her hospital gown on and ready to go... her dad was really excited to be there too. We couldn't feed darla jane for 3 hours pre-op so she was mad mad for a while. With dad's magic touch she was able to get some sleep and not worry about her hungry belly. ...and now we wait for the page that she is done. and ok.

Cath today.

We will be at Primary Children's Medical Center today. It's the day of Darla Jane's heart catherization. They will go up an artery near the groin area and feed a wire to her heart. There they will be able to better see the blood flow, measure pressures and most importantly place a stent, which is a wire mesh ring in her aorta where there is some narrowing. They will hopefully be able to place an adult size stent so that as she grows they will be able to slowly stretch it to fit her full grown heart. She will need to go in every year or 2 to have this done.
This is a picture of a stent. (courtesy of google images) it is narrow as they feed it into place and then a little balloon is inflated to stretch it out. Hers will be stretched little by little as she grows, through subsequent procedures. I'm not sure that is how long hers will be though.

Today she will need to go under anesthesia, which is always a little scary, but she is over her cold and ready to go so she should do great.

Little miss will need to stay at the hospital over night which is standard procedure when a stent is place in case it moves. A chest xray in the morning will confirm that is hasn't and she should be back home again tomorrow.

We will definitely update on how it goes.