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.