Monday, February 27, 2012

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!!!        

Sunday, February 12, 2012

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.