Thankful

Thanksgiving

a time to reflect what one is thankful for.  I am Thankful for so many things,

but this Thanksgiving I am Thankful for the opportunity the Lord has

given me in crossing my path with Josh & Ashley Bradley.

Unknowingly we were chosen to be parents to children with a Congenital Heart Defect.

Not something that we would have chosen on our own, but chosen by God.

God has a plan, a plan only He understands........

 

   Kirby Faith Bradley

was born April 10th, 2012

and spent every day of her life at MUSC fighting for her life. 

I really didn't know Kirby,

or her parents Josh and Ashley very well, but I knew them. 

When you are apart of a "family" like ours,

you reach out.  You reach out to those you hardly know, because 

we are all associated by someone

that knows someone that knows someone, that knows you.  

 

I met the Bradley's back in May

when we went to Charleston for Charlotte's surgery. 

Charlotte was in the bed right at the entrance to the unit,

so every time Ashley and Josh came to visit Kirby, 

we would always chat for a few minutes, 

catching up while they washed their hands. 

After Charlotte was moved to 8D, I didn't get to see them anymore,

but they stayed in my heart and prayers as the days and weeks passed by. 

I would send Ashley a message or two on her blog,

but I never really kept in touch

 because I knew how busy she was trying to get Kirby home.  

I knew that once they got home, which is about 10 minutes up the road from us,

I could hopefully visit and stay in touch. 

I NEVER once thought that Kirby would never come home. 

I was heart broken, I was devastated

when I got the news that Kirby had passed. 

I immediately called Brian and broke the news to him, he cried, we cried. 

It was close to home for us.  I don't mean distance, I mean it could have been us.  

Kirby was someone we had come to know, and talked about daily. 

I would read Ashley's blog to keep updated on how things were going

and Brian and I would pray so hard that this little miracle would make it home. 

Kirby had been through so much and had made it through so much......

She was a fighter!!! 

Kirby Passed away November 11th. 

She was 7 months and 1 day old.

 

 I went to see Ashley after they had made it home from Charleston,

she told me that she knew God had a plan,

that He had a reason for taking Kirby home. 

It was a blessing to be with Ashley,

she was such an encouragement.  

Ashley showed how strong she was in her faith!!! 

I was an emotional wreck, I felt terrible for being an emotional wreck. 

I had come to comfort Ashley, but she was the one comforting me! 

I can't imagine the pain, the emptiness, the loss that they are feeling.  

All I could do was hug Ashley and tell her how sorry I was and I loved them.  

After seeing how Josh and Ashley have leaned on the Lord for help and support,

it makes me THANKFUL for friends like them.  

Makes me THANKFUL for knowing GOD,

knowing He is helping them through the most difficult time in their lives. 

Makes me THANKFUL for my husband, that we are on this journey together.  

Makes me THANKFUL for Charlotte,

blonde hair, brown eyes, loud about

everything and into everything.  

 After realizing just how fragile

life is and how close we came to not having her

makes me even more

THANKFUL to have her. 

Our lives are definitely MORE with her in it!!!    

          

Updates

          Sorry it has been a while 

but life in the Cooper house hardly ever slows down

and when it does,

I usually fall asleep :)

 Charlotte had a cardiology appointment on Oct. 9th

and it went VERY well. 

Her O2 was 98% and that is the highest it has ever been!! 

Charlotte did great for her echo, nothing had changed. 

As far as Dr. Horne is concerned he will see us in 6 months. 

Thank you Lord for a good check up. 

Now if we can just make it through the winter without any hiccups,

(like hospital stays, which Charlotte is know for)

then things will be good.

 

Charlotte

has made a move over the last month,
a move out of my bed!!! 

I never thought that night would come. 

I thought that she would be in my bed til she left the house,

but daddy had other plans. 

I must admit that it has been nice to have my bed back :)

Not being woke up by feet in my face or being nudged off the bed

has made a difference in my sleep for sure. 

Charlotte moved to the bed with Emma and Lily and they love it. 

Every night they get into trouble talking and giggling after the lights go out.  

Brian and I sit and listen to them laughing and talking,

and get tickled ourselves at how silly three little girls can get. 

I must admit it is nice.  I want to take a minute to thank the Lord

for what he has done for Charlotte, and our family.

The Lord listens to our prayers and He has been so gracious in answering them.

It truly is amazing to see Charlotte, to see how healthy she looks,

how great her color looks,

to see her act like nothing has ever been wrong.

Thank You Lord!!!
    

Stellah

is growing like a weed, 5 months old and the sweetest thing ever. 

Stellah is such a pleasant baby and Charlotte loves her so much. 

The minute Charlotte wakes up in the mornings

I hear her little feet pitter patter across the floor into the bedroom

and I hear her asking if Stellah is awake. 

For the most part, Charlotte is pretty good with Stellah. 

Charlotte wants to hold her all the time

and when Stellah is laying on the bed I have to watch them like a hawk

because Charlotte is right there beside her the whole time. 

I think Charlotte is afraid she's going to miss something. 

Last month when I took Stellah for her 4 month check,

the Dr asked if she was rolling over, I laughed. 

I told the Dr that Stellah probably will never roll over,

probably will go straight to walking, 

because every time I lay her in the floor 

she gets swarmed by her

sisters :)
 

Just want to ask for prayers for a few heart families. 
The Bentley's
are in Charleston with their
daughter Anna Grace,
she had her 3rd surgery, the fontan on the 9th. 
Please pray for this family
as they have made it over the first of many hurdles
 these next few weeks.

(This is Anna Grace) 

The Bradley's,
they  have been in Charleston for seven months. 
They have been there since their daughter
Kirby was born April 10th. 
Kirby REALLY needs to be lifted up in your prayers. 
Thank you for your prayers!!!

(This is Kirby)     

8 Wks Post Op

Seems like a long time since I last posted and I am sorry for the delay, but life has been a little busy with little Miss Stellah and Little Miss Charlotte fighting for reign of "Ruler of the House".  I get so tickled at Charlotte, she lets me know in a hurry that it's her time for mommy time and I need to give Stellah to whom ever is the closest that will take her.  Sunday at church, Charlotte told me, "you hold me, Meme hold Stellah".  Charlotte wouldn't have it any other way and was even pulling on Stellah to get her out of my arms.  I would have to say for the most part, Charlotte has done very well with having her world turned upside down all in a 2 week span.... open heart surgery and a new sister.  She is very loving and caring to Stellah and I am so proud of her for being such a great big sister!!!  If you had asked me before Stellah how Charlotte would act, I would have told you she would be jealous and mean.  Charlotte has made me out to be wrong, not to mention that she has bounced back from surgery like a champ!! 

Today Charlotte had a cardiology appointment with Dr. Horne and she got a great report!!!  Her O2 level was 95%, and she weighs 32.6 pds.  I knew she had gained weight since surgery, but she has gained 4 pds since our last cardiology visit :)  I can't believe how big she is getting.  Dr. Horne said her Echo looked great and he couldn't see any sign of a fenestration.  Glad to know the fenestration has closed up on it's own, no heart cath to close it :)  We don't have to go back for 3 months, so October will be the next visit, YEAH!!!



I am so thankful that the Lord has blessed me with my girls!! Each and every one of them are a blessing.  I couldn't imagine my life without them.  I am thankful the Lord saw me fit to be their mother.  When I look at this picture, I see love, miracles, bonds that will never be broken.  I see my oldest daughter and wonder where the time has gone.  I remember when she was the little bundle of love swaddled in my arms.  Now I see a beautiful young lady that amazes me every day.  I see all of the girls growing and becoming beautiful young ladies, amazing me as life passes by.  I look forward to the future, wondering who they each will marry and how many children they each will have.  I wonder if they will have little girls running around squealing and laughing and fighting, or maybe the Lord will see fit for me to have a grandson :)  Whatever the future holds, I look forward to it!      

Our New Arrival

Well, let me just say that this last week has been busy.  As you know, I was expecting a baby and I was due June 13th.  I had an OB appointment last Wednesday morning and while I was there I had a talk with the Dr about what I wanted for this delivery.  With the last three deliveries, I had to be induced and I didn't want to be induced this time.  I really wanted to go into labor on my own.  Well, while I was at the doctor's office, the Dr. suggested that she strip my membranes to possibly help get things going.  Dr. H. said it could be right away or not even work at all, it was a gamble, but at least we were trying to do everything possible to help me.  I left the office and acme home, nothing was happening.  I just knew that I would have to endure that procedure again as painful as it was, but to get what I wanted I would do anything.  Brian came home from work around 5:30, we sat down with Charlotte for supper (the other girls were with my mom going to Bible School) and I felt a pain.  After supper and while Brian was getting ready for church, I had a few more pains but nothing consistent or painful so I took Charlotte outside to play.  It was about 7:00 and Brian was getting ready to leave for church when he asked me if I wanted him to stay home with me.  I felt pretty good, but with the circumstances, I thought it would be good for him to stay because church is 20 minutes away.  Brian napped on the couch while Charlotte and i were out side playing and I packed a bag for the hospital just in case.  Around 8 p.m. Charlotte and I came in to get Brian because it was time to leave to get the girls from Bible School.  We left the house at 8:10 and within a 10 minute span I had 3 contractions, so I called my mom and told her we were heading to the hospital because I thought I was in labor.  I didn't want to take a chance seeing as I was 4cm in the office.  After my husband drove 80 mph to the hospital, we got there around 8:45, went straight to L&D to get checked in and I immediately asked for pain medication :)  I was hurting pretty good by this time.  I was contracting about every 3 minutes and begging for medication but the nurse was taking her time getting me admitted, my IV started, and to my room.  FINALLY around 9:30 I was moved to my room and I was STILL begging for pain meds and the nurse checks me to see how far I had progressed and I was 8 cm and she just looked at me with pleading eyes and tells me I have progressed to far to get an epidural O_O.  You gotta be kidding me, I am screaming at the nurse and begging God to help me cope with the pain as I endure contraction after contraction.  I had no idea that I would progress so fast.  I remember the doctor walking in the room and me telling him I felt like the baby was coming and the nurse asked me if I was sure.  I wanted to reach up and smack the crap out of her but I couldn't let go of the bed rail.  While Dr. P was getting dressed, the CRNA came in and they were talking if there was anything that could help me with the pain.  After a few minutes of them discussing options Dr. P asked if I could roll to my side to get a shot or something that could possible help, but he felt like I was going so fast that the shot wouldn't have time to work.  Dr. P asked what I wanted and I told him I wanted to push.  Dr. P told me to push if I needed to and when he checked me and I was 10 and complete and he could feel the bag of water.  I started begging him to break my water because in the past it usually sped thing up.  Dr. P asked if I was sure if that was what I wanted and I said yes.  I heard him ask for a hook and I was having a contraction and started pushing and my water broke!!  Thank you LORD, I felt better as soon as it broke but I was still begging God to help me!  I can't explain the difference in the pain, it still hurt but it was a different  hurt.  I heard Brian tell me to push and out she came!!  Immediate relief flooded my body, I was so overwhelmed with emotion, and shock. Shock that I had just experienced natural child birth and all the emotions of giving birth.  I just birthed my 6th daughter into the world and gave her life........very overwhelming.  I wanted to see Stellah so bad, she was in the little warning bed being checked out by the nurse and finally the nurse brings her to me, my little miracle from God, so tiny and small.  Stellah Louise Cooper, born May 30th 2012 @ 10:06 p.m., weighing 6lbs 15oz's, 19 inches long. 

I must admit that I was a little worried how Charlotte and the other girls were going to react when they got to meet Stellah, but it was a blessing.  As soon as the girls walked into the room, Maggie's face said it all to me, all smiles and squealing, "mama, she's here".  They all just gathered around the bed and wanted to touch Stellah, sizing her up counting toes and fingers and giving her little piggies kisses :) it was so sweet.  I wish that I had had time to set up the video camera to capture those first moments of Stellah's life.  The love that was present in the room, the bond of sister's that is present immediately, it was astounding!!!  I love my girls, each and every one of them.  I am so thankful that the Lord has blessed me as a mother with 6 wonderful daughter's, and as a wife with a wonderful husband that loves me and our family and the Lord.  I was afraid that Charlotte would be so jealous of Stellah, but as you can see, Charlotte is filling the role of big sister just fine :)  Charlotte loves Stellah so much, she is constantly touching her or trying to kiss her.  I get tickled because I can just look at her when she touches Stellah and she will tell me, "I just touch her" or "I just kiss her" like she's gonna get in trouble for touching or kissing her. It is so sweet, but I have to watch her like a hawk because she tries so hard to hold her all by herself and she climbs the bassinet to look at her.  I gonna find her all up in the bed with her if I am not careful and boy wouldn't that be a mess!!!

Thank you Lord for my miracles!  One little miracle holding and kissing another :) I feel so blessed!!

Post-Op Check

Charlotte had an appointment with Dr. Horne for her post-op check.  The best thing about the appointment was to see Charlotte's oxygen level was 92%.  Thank you Lord !!  I was really dreading this appointment because I thought Dr. Horne might take out the stitches that Charlotte has in her tummy.  Charlotte thinks that her stitches are a spider, it's really cute.  I can ask her where her spider is and she will pull her shirt up.  I don't know how she came up with "spider" because if we are outside and she sees a spider she screams bloody murder, so I would have thought it would scare her to have a spider on her tummy??? 

 

Anyway, Dr. Horne wanted to wait til the following Tuesday to remove the stitches and have a chest x-ray to make sure the plural effusion had totally resolved.  I was hoping that he would have an x-ray during the visit because Charlotte has had a wet cough that doesn't seem to be getting better and I wonder if it's related to the effusion, or allergies?  I pray that it is only allergy related so that maybe allergy medicine will take care of her symptoms.  The only thing that worries me is that it is more apparent at night when she lays down.  I think that I will call the pediatrician Saturday morning and see what she thinks.  I know I am probably over thinking things, but I get worried very easily when it comes to Charlotte.  I hate  to think that something could be going on with her lungs and me wait til Tuesday for the x-ray, I would never forgive myself.  Besides, the only time she complains about anything is when she coughs.  She gets this look on her face and I can tell it hurts and she tells me "I ok mama, I ok".  Bless her little heart.

I decided to call the Pediatrician on Saturday and she agreed with me that Charlotte is suffering from allergies.  Charlotte's x-ray looked good so I am feeling much better about the labored breathing at night.  I think maybe the muscles in her chest are just tight and it hurts when she lays flat.  Glad we got the x-ray out of the way instead of having it at the cardiology office.  Lord, I pray that you heal my little angel, and help her overcome the pain that she is suffering from.     

Home bound :)

Six days, the longest six says of our lives since out last stay in Charleston (Charlotte's birth) and finally we get the green light to go home.  Brian has gone with Charlotte to x-ray and echo and I stayed behind to make a few phone calls.  Around 1p.m. the doctor came in and announced that as long as the reports of the x-ray and echo come back normal we get to leave today.  I am so ready to get home, back to my children, our life, back to being normal.  About an hour later the doctor comes back in and informs me that everything looks good, he is waiting the final report, but we are getting discharged!!!  I hug this man, the doctor, and I head straight to the echo department to find Brian and Charlotte.  I want to tell them the GREAT news!!  Seems that the echo took a little longer that I thought because when I got there, I had to wait about 5 minutes before the door opened.  I didn't want to disturb the tech knowing so I just waited.  When the door opened, Brian is carrying Charlotte out to the wagon and I just started crying.  Brian is all worried and all I can say is "home".  I think after a few minutes, Brian finally understood what I was telling him.  As we walk down the hall, I finally get it together enough to tell him everything looked good to the doctor and we were being discharged.  We get back to the room and I get everything all packed up, Brian takes it to Ronald McDonald House and he packs everything there so that when we are ready to leave all we have to do is put it in the truck.  It's probably 1ish by this time and we decide to head to the cafeteria to get lunch because Charlotte is hungry.  We wanted to eat somewhere else seeing as we've ate hospital food but o-well.  We didn't get back to the room and seated when the nurse walks in with discharge instructions.  Brian said, "I knew this would happen".  Charlotte ate half my pizza and right as the nurse was finishing up instructions, Charlotte thew up all over herself :(  I am about to panic thinking we are going to have to stay.  Seems that the wet cough is a little drainage as well and it has made her tummy sick.  I am surprised that we are getting to leave but THANK GOD we are out of here!!  I am so happy, but I think Charlotte is more excited and happy than I am.

    I thought when I laid out her clothes that the shirt I chose was fitting for the occasion.  It tells a story that only a heart family would understand.  We head back to RMH, pack up the truck and head to the ponderosa.  We get home before the girls get there, but we are waiting outside for them.  When they get out of the truck, Charlotte runs to the girls and they run to her :) such a sweet sight.  It gets a little crazy having everyone together, but I sure have missed the crazy and loud giggles and screams of all of the girls playing together.  The sound of laughter is music to my ears.  I am so glad to be home, THANK YOU LORD for all your blessings and answered prayers! 

Just a little note, there was a little girls names Katherine in the bed beside Charlotte in PCICU.  Her parents have just found out that Katherine is in need of a heart transplant.  The day we left PCICU, they had found out that Katherine had been approved and placed on the transplant list.  Please keep this family in your prayers!!  Also, I met another couple that live in Boiling Springs that have a daughter named Kirby.  Please keep this family in your prayers as they travel the road of unknown like so many of us.

Post-op Day Six

This morning at 3 a.m. when the nurse came in to check vitals, she woke Charlotte up and I was upset.  Why can't these people realize that we all need sleep?  Well, I guess the Lord had a blessing in store for me.  After the nurse left, Charlotte asked me to turn on the movie Despicable me.  While we are laying in her bed trying to get her back to sleep she looks at me and says "chickalay mama".  I get the box and cut up the chicken and gave it to her.  Little to my surprise, she ate all the chicken, 2 strips, and drank the rest of her orange crush from supper.  A little picnic does the body good:)  I have been praying for her to get her appetite back and the Lord answered my pray!

  Finally around 4:30, Charlotte falls back to sleep and so do I til the nurse comes back at 6 a.m, vicious cycle around here.  I figure I just need to get up and get a shower because around here after 6 a.m. the revolving door of doctors and nurses start.  Charlotte is scheduled for another chest x-ray and echo this morning.  Hopefully we will get good news, because if they look good, we get out of here today!!  The x-ray looks good from the one yesterday morning, so now we wait to hear about the echo.

Poor Brian, Charlotte has walked his legs off this morning, asking him to pull her in the wagon.  He pulls up to the door of the room after walking all over the hospital, and she just sits there looking at him like hello, what are you doing, take me for a ride!!  He falls for it every time and off they go.  Charlotte doesn't care where you take her, just as long as you take her.  I know for a fact that Daddy would move heaven and earth for his little angel, so a little wagon ride, nothing to it.  After all that she has been through, if it makes her happy, he's happy to do it :)



Post-op Day Five

Charlotte has done well through all of this so far.  Last night was a little rough because of the IV:( The nurse was kind enough to run the meds through slowly and it seemed to help.  Finally Charlotte is up and ready to troll around the hospital.  She's funny, when we get her out of the room, she cries when we have to go back and she just begs us to take her "dis way" as she points in the opposite direction of the room.  We got her out to the Atrium this morning, and she had so much fun.  Our room overlooks the Atrium and there are kites and things hanging from the ceiling and she had been begging to go since we have been on 8D.  Charlotte has a love for trains, so when she found the train table she didn't want to play with anything else. 

I must admit it is a little challenging getting her around with a monitor attached to her with wires that hang.  Finally I just decide to let it lay on the floor and let her drag it around, what could it hurt?  Saves my back that's for sure!!  I know with all the walking and playing it makes for a really tired little girl.  Today has been a little concerning for Brian and I.  Charlotte just looks weary, and her eyes are a little sunken in.  Then she tells me she wants to potty and when I sit her on the potty she screams and cries:(  I think she is constipated and I have asked for some miralax, I just hope it works quick.  Charlotte hasn't had anything to eat most of the day, and that bothers me a little.  Usually she eats one meal a day, but so far nothing.  Brian and I took her to the cafeteria to see if she saw something she wanted for lunch........Pickles, dill pickles.  I can't believe she has picked pickles for lunch, but hey if that's what she wants.  It's Poop time in room 831:)  I think if you could smell it all the way to Spartanburg if you tried!!  I am so Thankful that she has pooped, she acts some better now!  Supper time and we take her back, "chickalay" is what she has spotted this time.  I don't believe it, but she ate two strips of chicken and drank a orange crush.  We got great news that Charlotte's meds have been changed over to oral and the one dose of the second fluid medicine was all she needed, so no more IV, Thank you LORD!      

Post-Op Day Four

Happy Mother's Day to me:)    I miss my older girls so much, I hate that we are away from one another,  prayerfully it want be much longer before we are back home and all together.  So last night was uneventful to my surprise, at least til 4 a.m.  The nurse came in and was checking vital and asked if Charlotte had a wet diaper.  I proceed to check and sure enough, she was soaked, bed and all!  So I changed her diaper and washed her off and the nurse changed the bed sheets.  After all that excitement, Charlotte wanted me to sleep with her.  I'm thinking how is this possible???  Well, I scoot her over to the side of the bed, Chest tube, wires, everything I can move and SQUEEZE in the best I can:)  After I got in and somewhat comfortable, she snuggles up to me and rubs her face on my shirt like she always does at home.  I knew I was where I was suppose to be.  It was nice to see her snugly and happy:)  It took forever for us to fall asleep, or so I thought, then a knock at the door at 5 a.m. - X-ray.  It didn't take long and back to sleep we went til daddy woke us up at 7:30, come in the room.  Dr. Savage came in this morning for rounds.  The x-ray still shows some fluid built up on the right side, but not as bad as yesterday.  He wants to leave the chest tube in another day and if we want we can go to the Atrium or even outside for a walk.  Brian and I was happy with the news, an uneventful day to just get her out and about and working on getting the fluid gone.  Maybe an hour later, Dr. Bradley walks in the room, all smiles and has decided to pull the chest tube!!!!  OMG I am screaming inside, I am happy, but nervous because I know another traumatic morning:(  Morphine here we come.  Dr. Bradley said as long as she does well today and her afternoon x-ray looks the same or better he will leave her alone.  If it has changed for the worse, he will have to place a small chest tube to drain the fluid on the right side:(  Not something I wanted to hear or even think about, so I'm looking at my glass half full today and pray for no complications!!!  As soon as Dr. Bradley leaves, Charlotte passes out asleep and has slept very well this morning.  Seems her O2 has been off since last night too, but her O2 is even better now that the tube is gone!!  Check out this sleeping position, I think she looks so cute:)

So the day has gone really good.  Brian and I have gotten her out and about wondering the halls this afternoon, and Charlotte has done really well.  Charlotte has walked the halls of 8D and 7C, walked the unit, we even took her outside and she chased after a pigeon.  I honestly think we may get to go home in a day or two at this rate!!!  She loves riding in the wagon and I get so tickled at her and Brian, he keeps telling her that what happens in Charleston, stays in Charleston. 

She definitely is getting spoiled while we are here.  Waiting on her hand and foot, man it must be nice.  I just hope she doesn't get to use to it so when we get back to reality she doesn't expect it.  The only trouble we have had this afternoon is the IV.  The lasix can run through the IV, but when the flush runs, she complains that it hurts.  The nurse decided to run the flush slower to see if it helped and it did.  Then tonight the nurse came in at 10 p.m. to get the IV lasix running and Charlotte screamed.  I asked the nurse to turn the IV off and see if she could just get her lasix orally.  I didn't realize it would take an act of congress to get that to happen.  The nurse paged the doctor and because Dr. Bradley decided to wait til morning on an x-ray, the night doctor ordered an x-ray to check her lungs because the chest tube was pulled this morning.  So we play the waiting game while we wait on the x-ray report and the decision on the oral med.  I pray to the Lord that she can get the oral meds, if she can't she will have to endure another stick for and IV that she will only need for a few doses of IV lasix.  Needless to say I am not real happy at the thought of torturing my daughter for that.  The x-ray came back and the doctor has added another fluid med and it has to be given IV.  I am not happy, but if it helps pull the fluid off then lets get it started.  Now the test to see how the IV holds up.  Lord, PLEASE be with my baby and help her get through this round of meds so she doesn't have to endure another IV!!

Post-op Day Three

Day three, sheww it has started out terrible!!!  I was so looking foreword to coming to the floor, but sleeping on what ever they call this thing is miserable, not to mention that the nurse came in the room every hour last night.  Charlotte's O2 level dropped during the night and had to be put back on O2:(  Then meds every 4 hours and vitals every 4 hours.  I just wish that those 4 hours were the same 4 hours.  Then at 5:30 this morning x-ray showed up, then at 8 a.m. the lab showed up.  Then after the lab ordeal, the nurse realized the IV wasn't working anymore and had to go through another IV again.  Torture, pure and simple torture.  One good thing is that the O2 was taken off and Dr. Bradley came by and removed the small chest tube and pacing wires.  It was torture as well, but at least with the chest tube, the nurse gave her some morphine to help with the pain. 

This afternoon, after the chest tube, x-ray came back and so did Echo.  The x-ray shows a small plural effusion on the right side of Charlotte's chest, but the echo was good.  So with the effusion, she has to have O2 AGAIN and I have to get her out of the bed.  It's hard to get her up when she is attached to things that don't give her room to get up!!  After talking with the nurse, we have decided to get her up this evening and sit in a chair and blow bubbles, maybe even take a walk around the unit.

So I FINALLY got her to let me put on some jammies, she really didn't want to, but seeing as we are going out of the room, she needs something on!  Bless her heart, she has been sweating like a mule and I know that is why she didn't want them on, but Meme has worked so hard on these jammies for her, I hate to not wear them.  Charlotte is not a happy camper, but we are getting her up for a walk to see how it goes.  As I expected, not so well.  She cried the whole time she was out of the bed, even while in the wheel chair.  I hate to see her upset, but I know it's for the best.  She has to get rid of the fluid on the right side of her chest or we don't get to go home:(  After the outing, the nurse gave Charlotte some pain meds and she was like a different child, all smiles and sitting up in the bed playing with daddy.  That's the Charlotte I know and miss and can't wait til she is back 100%!!!

Post-Op Day Two

Brian and I stayed with Charlotte last night til she fell asleep, which was 10 p.m.  It makes for a long day when we just sit in the unit all day long not being able to hold her.  When we left, we asked the nurse to call us if she woke asking for us.  Never got a phone call, so I pray that everything went well.  The nurse told us she watched movies when she woke, but didn't stay awake long.    I hate leaving her!!  Until this trip, I have not spent one night away from her and I absolutely hate that she's not sleeping with me.  I find myself waking up in the middle of the night looking for her.

We got to the unit around 8 a.m. and she's awake watching movies and looks like the Queen on PCICU.  The nurse tells us that Charlotte has had a few episodes of vomiting, but it was clear so they think it's just mucus.  Still, I get a little worried, but after a few episodes while I am there and see for myself that most of it is just juice and water that she has just drank, I don't worry as much.  Cathy the NP stoped by and told me not to worry to much because day 2 seems to be the worst for some reason.    Charlotte is asking me to hold her and I can't, so I try my best to climb in the bed with her and hold her.  The nurse decides to give her some Zophran and it helps a lot.  After about an hour Charlotte is asking for something to drink and I asked for a Popsicle to give her.  Charlotte isn't much on Popsicles, but she is absolutely tearing this one up!!!  I'm sure it feels good in her dry mouth.

 This afternoon was an exciting day!!!  We were kicked out of the unit because of a surgery case that had came back, but when we got back, Charlotte was missing some lines:)  The nurse had taken out her IJ line, this line is in her jugular vein in her neck and the arterial line in her wrist, also had taken away the O2, and the bandage off her incision.  YEA, getting a little closer to 8D!!  I get so excited when the little things start to happen:) 

 

Look at this beautiful face, finally a smile that will make any heart melt!!!  This day has turned out to be a pretty good day after all.  Me found out about 5:30 that we were moving to the floor and by 6:15 we were gone.  It is great to be walking the "MILE".  Brian and I both had tears of happiness flowing because that Mile is the best mile ever.  It means that Charlotte has accomplished so much and that it want be to much longer before we see Maggie, Anna, Emma, Lily and Campobello!!!  Thank you Lord for your blessings.

Post-op Day One

We asked the nurse to call us during the night if she was taken of the vent, and I got a call around 2:30 this morning that she was off the vent!!  Praise the Lord!  She seems to be doing great and she's even had a wipe down.  Seems after being taken of the vent, she threw up all over the place so the nurse didn't have a choice. We made it to the hospital around 8 a.m. and when I walked in she was sleeping like an angel.  Brian was able to get Lily inside the unit to blow kisses to Charlotte.  Lily has asked so many questions, and it is so hard to make her understand what's going on. 

It was so nice to see her beautiful face.  I walked up beside the bed and she opens her eyes and I tell her good morning, and she says "good morning mama".  It was the sweetest words, her little voice cracked and low.  I wanted to pick her up and hug her, but I know that is impossible right now, soon though.  I am staying with her as much as I can.  Charlotte is still really sleepy and that's good because she needs the rest.  We sneak out for lunch while she sleeps and back as soon as we are finished.  It seems that when Charlotte sleeps, her oxygen level drops, so the doctor wants her on O2 while she sleeps to help keep it up.  While she is awake, it runs 88% and higher.  When she sleeps, it runs in the high 70's low 80's.  You can tell in the picture that Charlotte isn't to happy with the O2.  She gave her nurse a fight when it was time to get the nasal cannula put on.  I don't blame her to much, all the tape they use always irritates her skin and she claws at it.  I keep telling the nurses to use a different tape, but everything this go round has tore her skin up.  I just pray that the Lord helps her though all this and we get out of here in a few days. 

Surgery Day

It's 2 a.m. and I am laying in the bed staring at Charlotte while she sleeps.  I can not sleep for praying.  I know that God will take care of her, but still I can't sleep.  I look at how peaceful she is and how sweet and beautiful, and I just Thank God for the time we have had together these last two years.  She is my little miracle baby.  I decide to get up at 2:30 and get a shower, and get ready.  I wake Brian up 4:00 so he can get ready and help me with Charlotte.  She is so sweet, even at 4:30 in the morning she is sweet and loving and so full of questions.  "Where we going" and Brian tells her to the hospital.  "We see Dr. Bradley?"  Brian tells her yes and she's fine, gets her bath and dressed and all wrapped up in her blanket and back to sleep.  Must be nice to sleep in a time like this, but look at her, she is knocked out!!

We have made it to the hospital and all checked in and everyone has come to introduce themselves again and the CRNA tells me I have to wake her up to give her some versed.  This is med that will help her if she is anxious and let's just say it works REALLY well:)  Look at those cheeks,

they look like they are about to bust, she is smiling so much.  We have laughed at her so much this morning after this med, that she is laughing at us.  I am just thankful that she is "drunk" because I don't think I could hand her over to anyone if she was crying and screaming.  This makes it so much easier!!  It's about 6:15 and Tim the CRNA tells us it is time to go.  We hold her tight, Pray to God and Tim takes her in his arms and off they go.  She still has no clue, she's all smiles.  We head to PCICU, get a pager and wait for the first page to let us know things have started. 

9:15 and first page, surgery started on time and Charlotte is stable.  10:15, Charlotte on bypass, stable and doing well.  11:30 , off bypass and finishing up, Dr. Bradley will be in to talk with you around 12:30 so make sure you are available.  Of course this scares me a bit, it's only been what 3 hours and we were told 5-6 hrs, what has happened?  Dr. Bradley shows up and tells us that everything went really well and quicker that he thought, that we should be able to see her in about an hour.  SHEWW, let me wipe the sweat off my brow and catch my breath, I was waiting for the bad news.  Finally get to see our sweet angel.  She's on a vent, has lines everywhere and knocked out, but hey she made it through and it will be just a matter of time before we see those beautiful brown eyes.

  

Pre-op Day

Pre-op day and we are on our way to the hospital.  Charlotte keeps asking where we going and Brian keeps telling telling her we are going to the hospital.  We get all checked in with admitting, then up to SDS to check in and we have a wonderful nurse named Christan.  We meet Christan when we cam down in March.  We instantly made a connection with her, so we were happy to see a familiar face.  Pre-op is scheduled from 9 - 2 today, not to happy about that. 

We start off with weight, blood pressure, temperature, you know the usual stuff.  Then Charlotte gets a EEG, then we go to Echo.  So far so good, then the nurse puts this cream and a band-aid on both arms and Charlotte hates band-aids.  I know what's coming, hopefully it will only take one stick!  Dr. Bradley comes in to talk to Brian and I about what he has decided to do and we are a little taken back.  The procedure is something that hasn't been mentioned to us until this minute, it's kind of a blow??  I really don't know how else to describe it.  We were under the impression that this was going to be a simple surgery.  Anyway, A Bi-Directional Glen procedure, closure of the ASD with a fenestration, and remove the shunt that she has will be done.  The surgery is scheduled to last 5- 6 hours.  I just start praying immediately after talking and taking in all this information.  Dr. Bradley seems to think the Glen is the best route because of the small right ventricle that Charlotte has, but she will still be able to use the ventricle.  This is good news, so we agree that Dr, Bradley knows what is best and we sign the consent form.  The Nurse gives us some instructions about a special bath that I have to give Charlotte 0_0, wow, it is crazy what you have to do to get ready for surgery.  We meet with Anesthesia, Cardiology, and the blood draw and we are FINALLY finished!  It is now 3:30 in the after noon and it is just crazy that it takes all day to get through what we just went through. 

Off to the Ronald McDonald house to get checked in and meet up with Oma, Papa and Lily, then off to eat, play and have a good time.   We have met some friends for supper that live down here and it is great to see them.  Charlotte has found a new friend and she is so sweet to Jayden, she want leave him alone. 

Finally off to the park to play out so we can get back to the room for a bath and to bed.  We have to be at the hospital at 5:30 a.m., but I have to get Charlotte up for another special bath before we leave so looks like we have to get up about 3:30 - 4:00 a.m.  Fun times at the park!!!  I am happy that my parents are here and have brought Lily.  The girls play well together and they are having a great time.  I hate that we have to leave, but surgery looms and we have to get ready.

Charleston visit

Charlotte has had a small place, "bubble" on her chest at the bottom of her incision since we came home from Charleston almost 2 years ago.  Well, last week Charlotte started complaining that her chest hurt and she would rub the "bubble".  Thursday I noticed that it started getting red and I called the Pediatrician.  Friday morning we saw our wonderful Pediatrician, Dr. Donna and she called our Cardiologist, Dr. Horne to be on the safe side.  Dr. Horne decided that we needed to see a Pediatric Surgeon, so off to Greenville we went for an afternoon appointment and Charlotte was placed on Bactrim and to return the following Wednesday to recheck unless things got worse.  Well, over the weekend, the bubble got more red and bigger so I decided to call Dr. Donna instead of Ped's Surgery Monday morning because with surgery looming, I didn't want anything to jeopardize surgery!!  Dr. Donna is so AWESOME, and after we talked about things we decided that a call to Dr. Bradley was warranted.  I was to wait for a call from Dr. Bradley's office for an appointment this week for him to look at it.  Monday evening around 6:30 the phone rings and it is Cathy, Dr. Bradley's Practitioner asking what's going on.  After about 2 minutes on the phone it was decided that I would be seen Tuesday in Clinic because Dr. Bradley usually isn't in surgery and he would be able to look at the bubble himself. 

Tuesday Morning we are on the road by 8:30 and headed to Charleston as fast as we can.  We make it to Charleston after a few stops along the way around 11:30 and straight to clinic we go.  After Cathy evaluated the bubble she decided that it needed to be lanced, OUCH!!  As it worked out, Dr. Bradley was tied up with a procedure, but it didn't take long for him to finish.  Waiting for something so easy is almost as hard as waiting for heart surgery...... I was just as nervous and sweating and not looking forward to my baby being in pain and crying!  Dr. Bradley and Cathy decided that lancing it and send off cultures would be a good idea.  If cultures are negative, surgery is still a go May 9th.  We held her down and it was all over in about 15 minutes.  Seems that that little bubble ended up having a bunch of granulated tissue in it.  Cathy told me that the culture should be back by Friday and to just keep a check on it, a little antibiotic ointment and it should heal right up. 

Tonight, I took the bandage off for good.  Charlotte has tried her best to get the tape off and she has managed to get it off almost all the way every time, so I just decided to leave it off.  It looks good I guess, but she still want let me touch it.  I just pray that the culture comes back negative.  With 8 weeks to go before the baby comes, I really am stressed out about getting Charlotte to Charleston for surgery and home, hopefully fully recovered before the baby comes.  I have never prayed for any of my babies to be late before, but I have been praying that the Lord makes me wait for 42 weeks:)

The Waiting Game

Well, as you know we have been playing the waiting game, waiting to see if surgery is now or later.  I hate the waiting game, it is so hard to just sit and wait for the phone to ring, and when it finally does, I feel sick all over my body. 

Dr. Horne called on Thursday, March 22th to inform us that he had gotten an e-mail from Dr. Bradley and they were in discussion about what is best for Charlotte.  o we sit and wait while they discuss options.  Dr. Horne was leaving for a conference and would only be in touch by e-mail, but promised that as soon as he heard from Dr. Bradley he would call us to let us know the game plan.  I had my home phone forwarded to my cell every day to catch a much anticipated call from Dr. Horne and nothing.  Like always, we go to my parents house for supper on Thursday's and me thinking it was after 6, I didn't forward the phone.  When we came home, a message on the machine from Dr. Horne.  I felt a knot in my stomach as I hit the play button, and the voice started, "Mr. & Mrs. Cooper, this is Dr. Horne".................At first, I couldn't hear what Dr. Horne was telling us in the message for kicking myself for not forwarding the phone before we left for my parents.   We listened to the message 3 times just to make sure we understood him~ everyone agrees that it is for the best that Charlotte have surgery now instead of waiting.  I am expecting daughter # 6 in 10 weeks or less and Charlotte will need my undivided attention for a while, especially after surgery and once home.  So, with the birth looming near, the clock is ticking for us to get to Charleston and home before the baby.

Well, it has been the longest two weeks of my life waiting for the call, and FINALLY today we got it.  The first call, the lady said she had two dates for us to choose, July and then my mind goes blank.  JULY, really, July???  All I can think is, "This isn't BEFORE the baby and I thought that was the plan."  So I inform the scheduler what I was told and she said she would call me back.  About two hours later the phone rings again, This time Diane is on the line telling me that the Surgery date is May 9th.  Honestly, I am so sick right now fighting strep that I haven't had time to think about surgery.  Now that I am getting over it, I am scared to death............. because I will have 5 weeks til I am due and that is if I go full term!!!  I have joked with Brian that we go to Charleston with Charlotte, and come home with Charlotte and a new baby!!!  That would be my luck.

Well, I just have to trust knowing the Lord is in control and that all of this is happening in His time.  He has a plan and I just have to follow.  I must admit, it isn't as easy as I would like, but I will follow!!   

Heart Cath

I want to start at the beginning so here I go.  Last night we made it to Charleston around 6:30 and checked in our hotel and let Charlotte just roam around and explore the room while we decided what to do about supper.  Finally we decided to go to Triangle and have a burger.  After supper we hit Krispy Kreme and had a doughnut, and Charlotte had sprinkles and chocolate.  She never ate the doughnut :)  We made it back to the room and let her eat til she couldn't eat and drink anymore.  Finally around 11:30 she passed out and slept all night.  I was afraid that she would wake up wanting milk, but I am thankful that she didn't.  This morning, Charlotte slept through Brian and me getting ready and I scooped her up, wrapped her up in a blanket and headed to the hospital.  Made it through admitting and even the first 30 minutes in the Holding Room then a nurse with cold hands woke her up.  Of course Charlotte wakes up crying because she didn't recognize where she was and the nurse freezing her to death.  It only took a few minutes to get her calm, then about 20 minutes later Anesthesia comes to get information and gave her some versed to calm her for the trip to the lab.  Brian and I have never laughed so hard in all of our lives..... Charlotte was a little drunk kid, smiling, drooling and swaying back and forth, sitting in the little red wagon waiting to go.  It was hilarious, but still I cried when they pulled away. 

The Cath took about 5 hours, and we got an update every hour which made time go by quicker.  Finally we got the call around 1:30 to head back to recovery, Charlotte was back and waking up.  Charlotte looked so peaceful for about 3 seconds and woke up crying and I could tell she was in pain.  She asked for water and drank almost a whole cup, which helped her scratchy throat.  Charlotte coughed one time and the nurse came running over to check her groin, and she was bleeding!  The nurse had to hold pressure on her groin for 20 minutes, which was a total fight.  The nurse decided to give her a dose of morphine and versed and really quickly she was back asleep.  That was a blessing, because she had to lay flat on her back for two hours:(  Ended up, Charlotte slept the whole time two hour waiting period and woke up pretty happy.  After getting everything and Charlotte settled down, The nurse informed us that Charlotte didn't have a pulse in her left foot and she had to be put on heparin to help thin her blood.  IT took about an hour to get the pulse back, but her leg looked terrible.  We were going to have to stay the night in the hospital due to the heparin, but she didn't have to have it to long and the pulse came back pretty quickly, so Dr. Baker decided we could go home at 7.   Brian and I were chomping at the bit to get to talk to Dr. Baker about his finding, but we had to wait til 5:30, because he had another case. 

Finally, Dr, Baker comes back and tells us that Charlotte is still in the running for a two ventricle repair!!  That is awesome, because she would still get to keep the full function of her heart!!  Also, that they had ballooned off the Atrial Septal Defect (ASD), and the shunt to measure pressure, oxygen levels and heart function.  It seems that the blocking caused her cardiac function to decrease, but not enough to alarm him and her O2 level increased.  So now, Dr. Baker has to send Dr. Bradley (Surgeon) the results and then Dr. Bradley will contact Dr. Horne (Cardiologist) and they together will decide the path best for Charlotte.  So now we wait again for another 2 weeks til we can meet with Dr. Horne and find out the decision:(

I am just so thankful that the LORD answered our prayers and made it as easy as possible for Charlotte.  Now I just pray that we get the news we have been praying for these last 22 months!!!

Heart Cath TIme :(

So it is official, It's Heart Cath time again.  I received our letter in the mail last Friday with instructions for the Cath, but the phone call came this morning..... "Ms. Cooper, this is David, one of the nurses from MUSC Children's Hospital needing to go over instructions concerning Charlotte's Heart cath."  I felt that lump in my throat and found that I had a hard time swallowing.  It has been a year and 5 months since our last cath, and I just pray to GOD that we get good results.  I understand that this cath will be a little different from the last.  This time the Dr. will try to do some ballooning and maybe coiling collateral vessels, so if all that is done, Charlotte will have to stay the night in the hospital.  I think after her last cath, staying the night might be a good thing.  This way the nurses can monitor her closely and make sure that she doesn't get another partial bowel obstruction! 

Last night, Brian was playing with Charlotte and they were laughing and having such a good time, and I heard him ask her if wanted to go to Charleston and she said "yes."  Then I heard him say, "no you wouldn't if you knew why we were going!"  I must admit that I am a little nervous this trip.  Charlotte hasn't had any kind of surgery since she was 9 days old, and normally, these kids have surgery around 6 months old, then again between 2 -3 years of age.  Charlotte's Cardiologist decided at 6 months old she could wait for surgery to see how she grew and how her heart grew and functioned.  So we have waited and waited and waited and now it's game time, so we wait and see how this waiting game has played out.  I pray that we are on the winning team!!!        

CHD Awarness Week

February 7 - 14 is CHD awareness week and until Charlotte was diagnosed, I had never heard of a Congenital Heart Defect (CHD), much less that there was a week for awareness. A CHD has changed my life and the lives of my family, but we have found that with prayer and love all things are possible with GOD !

I will never forget the ultrasound appointment that my husband and I were so looking forward to.  We had been discussing the sex of the baby for weeks and my husband couldn't wait to find out if we were being blessed with a boy or a 5th daughter.  The appointment was going well and we found out that we were having another daughter and then....................................................
I remember laying on the table wondering what was taking so long and why the US tech wasn't talking to us.  The tech kept looking at something and would pull away quickly to something else, then back again to the area she was looking at the most.  The tech left the room and came back with another Tech who began looking at the same area, I knew then something was wrong.  It seemed like forever when both techs left and a third tech came in asking if we understood what was going on.  We questioned her question and she began telling us that our daughter had a heart defect and that we would be completing the scan and the Doctor would be in to discuss things with us.  Our lives were changed in an instant.  The room seemed darker and quieter and alone to some point.  My husband and I held hands and cried and prayed to GOD that he would take care of everything.  When the Doctor came in and we began talking, he explained to us that our baby had a problem with her heart and that they were not sure exactly what the problem was, but that I would return in two weeks to meet with a Pediatric Cardiologist and hopefully he would be able to make a diagnosis.  I can't explain how I felt, except for GOD had given me a peace about our baby and that HE would take care of us.

I began meeting with the Pediatric Cardiologist every two weeks and our baby was diagnosed with Ebstein's Anomaly, Pulmonary Atresia.  We made plans to deliver in Charleston at MUSC where our baby would have surgery to correct her defect within the first 10 days of her life.  Going to Charleston was difficult, we had to leave our other 4 daughters behind with family not knowing when we would be able to see them, THAT WAS HARD.

Charlotte was born on May 3rd, a beautiful baby girl and that's when our journey began.  Charlotte had her first heart cath at 2 days old, then heart surgery when she was 9 days old.  We had to stay in Charleston 25 days for Charlotte to recover from surgery and get strong enough to come home.   As of today, Charlotte has managed to hold her own and we have only been back to Charleston when she was 5 months old for a heart cath.  We are scheduled for a heart cath in April, and we still pray for the Lord's will to be done.  Charlotte is a happy, healthy, loving little girl and so full of life.  The Lord has blessed us with a child that has a heart defect and I am so glad that GOD saw us fit for the job!!!  I couldn't imagine our lives without Charlotte and we love her soooo much!   

     

Cough, Cough, Cough, Cough...........

Lets start at the beginning.....  Starting in November, Charlotte started getting this really terrible cough and runny nose, so after about a week or so I finally broke down and took her to see the Pediatrician.  Started her off on an antibiotic and so the story goes.......Here it is February and 5 rounds of antibiotics and nebulizer treatments and allergy medicines and chest xrays and finger sticks, AND still no better.  I think I have been to the Pediatricians office at least twice the last several weeks and I jokingly told them I wanted a room to stay in.  Dr. Donna has called Cardiology and Dr. Horne agrees that it its a virus, but why is a virus hanging on sooooo long???  I have pondered taking the girls out of school until I can get her better because we have a heart cath coming up.  Last night I had to call the Cardio Phone nurse because Charlotte's sat's were running 68-69 and they have never been that low before and I was worried.  Seems after talking with the Dr. on call, our April 2nd heart cath may be moved up til Feb/March.  I have been praying that her low sat level is only due to the cold that she has, but it worries me because she's been battling this for  months and this is the first time her sats have tanked :(  We also get to see a Pulmonologist this week per Dr. Horne, so I am a little anxious to see what the Pulmonologist has to say if anything???  Guess time will tell.