Wednesday, August 17, 2011

Aleah's Mended Heart

I was a young first time mother to be, very naive about things that could go wrong with my developing baby. All I knew is how badly I wanted a baby girl. Five out of the six grand kids were boys, so I was convinced I was having a boy. I wanted a girl even more knowing this. I did everything right, took prenatal vitamins, avoided caffeine, exercised and would have never have done anything that may have harmed my baby girl. At about 13 weeks I felt her first movements and from then on I thought as along as she was moving and kicking she was ok. I was so wrong. I was 22 weeks along when my doctor scheduled my 20 week ultra sound. I thought we were going to find out the gender not knowing that this ultra sound was to diagnose possible heart defects and other anomalies that were detectable by ultrasound by the 20th week of pregnancy. We went in for the ultrasound and I asked the tech to please tell me if she could see the gender of our baby. She looked for a few minutes and then said you see those three lines there, those are girl parts. I was elated; I was having my baby girl!!! I couldn’t wait to dress her up in all the bows and frills that baby girl’s wear, but my joy would soon end. The tech looked for a few minutes more, and had me move from side to side. She said she could not get the views she needed to see the babies heart and that she was going to get the doctor to come look, being the naive person I was I didn’t even catch that hint that something terrible was wrong, but Aleah's dad did. The doctor came in and looked for a few minutes and then he said words that will haunt me for the rest of my life. Your baby has birth defects, she has “The baby has water on the brain and her heart has not developed normally”. My heart was instantly crushed and I began sobbing. My dreams of having a healthy baby girl had been shattered into pieces. How could this have happened to me, I did everything I thought I could do, I thought I had done everything right, never taken drugs or alcohol, I did everything I was supposed to do. I didn’t even have time to take in the awful news we had just received before the doctors was asking if I would consent to an amniocentesis to check for the possible cause of her defects and I agreed. I squeezed her dad’s hand and sobbed tears of sorrow as they performed this procedure. Instead of walking out with pictures of our baby girl and making happy phone calls with the happy news, we walked out with our hearts crushed and tears streaming down our faces. I will never forget the phone calls I had to make on the car ride home. Telling my family the awful news about our baby girl was almost as heart breaking as hearing it for the first time. In the weeks and months ahead were a whirlwind of doctors appointments, and fetal echo’s to access her heart. We had many meetings with doctors to develop the best plan of care for her. We were told she would die before she was born, or she would most likely die after she was born, we were told she would be a vegetable and that termination was an option we should look into. My heart was broken, I didn’t know what to expect for my baby girl. I had ultrasounds every month to see if her heart was failing and every time I tried to prepare myself for them to tell me her heart had stopped and she was gone. I was so scared as the date for my C-section approached; I had tried in every way to prepare myself to never see my baby girl alive. We didn’t even prepare a nursery it would have been too painful to have it all ready and never bring her home with us. September 10th 2007 was the day I had tried so hard to prepare myself for but just never could. My baby girl Aleah Nicole came into the world at 4:09pm. I heard no sweet first cry, and didn’t even get to see her, I heard the nurse call out it’s a girl and the time she was born and that was it. They took her away, I didnt even get to see her. The plan was to put her in the NICU in the hospital where she was born to keep her close to me, but 30 minutes after she was born the nurse came in and told me that she has stopped breathing several times and they were going to take her to the nearest children’s hospital. I never got even hold her in my arms, they brought her in the room in her little clear incubator and I got to touch her little hand for a few minutes and then they rushed her quickly out the doors. A few days later I was released so I could go be with her before she was transferred to another hospital to prepare for her first heart surgery. I will never forget the first time I got to see her. She was all covered in wires and tubes, but I thought she was so beautiful, she was my baby girl and I loved her so much. It was so bittersweet, I was so happy to see her but so heartbroken seeing my baby girl with lines going in and out of her little body and machine breathing for her. No parent should have to see their tiny newborn child like this. I didn’t get to wrap her up in a little pink blanket all warm and safe and put her in the precious little pink new born clothes, I had to see her laying there covered in wires and tubes and watch as a machine breathed for her. My heart ached for her and I wanted to just heal her little body. At three days old she was transferred to another hospital and which was two hours away from our home. We drove back and forth for a few days but then we had to find a place to stay that was close by and prepare for our baby girl to have her first open heart surgery. Over the next few days we were overwhelmed with information about our baby girls heart defects and what could be done to try and fix her little broken heart. I would sit and just cry watching my tiny new baby girl fight so hard for life. She was on a ventilator to help her breathe and had many lines and wires coming from her tiny little arms and legs. She was four days old before I was able to hold her, and I was in tears when they handed her to me for the very first time.

The first time holding her was one of the happiest moments of my life. She was so sweet and tiny and all I wanted for her was to be healthy. We relied heavily on prayer to get us through each day and prayed to God that he would keep her with us. We had an overwhelming out pour of support from our families, church families and friends. It was overwhelming to see how one baby girl could make so many get on their knees; I joked and called her a prayer celebrity. We were devastated to find out that she would have to have surgery to survive in just a few short days following her birth. She would have to have a temporary surgery to sustain her life until she was big and strong enough to undergo a full repair of her heart defects. Aleah was born with two heart defects ventricular septal defect and pulmonary atresia. Pulmonary atresia is a form of congenital heart disease in which the pulmonary valve does not form properly. The pulmonary valve is an opening on the right side of the heart that regulates blood flow from the right ventricle (right side pumping chamber) to the lungs. In pulmonary atresia, a solid sheet of tissue forms where the valve opening should be, and the valve remains closed. Because of this defect, blood from the right side of the heart cannot go to the lungs to pick up oxygen. She was also born with ventricular septal defect which is a hole in between the two ventricles of the heart. At just nine days old Aleah had her very first heart surgery; I remember waking up early that day to go spend time with her before she has to go to the OR. I knew with each hour we were getting closer to handing our tiny fragile baby girl over to those surgeons and maybe never seeing her alive again. I wanted to hold her there in that rocking chair and stare at her precious little face and never let her go, the dreaded awful time came and we followed the surgical nurses to the OR to give what could be our last hugs and kisses to our precious Aleah. It seems like hours go by when you know your child is having major surgery. You jump every time someone comes through the door to give you an update not knowing if they are coming to tell you your child is gone. It agonizing to wait like that, but finally we got word she was finished and that we would be able to see her in an hour or so. Nothing I mean nothing can prepare you to see your child after having a major heart surgery. When we first walked in I was shocked at how bad she looked, it graphic terms she looked dead, lifeless, with a tons of machines pushing all types of medications into the many lines that were coming and going from her little arms, legs, feet and hands. The nurse started from her head and worked all the way down to her toes explaining all the lines and tubes she was covered in. The surgeon spoke with us and explained the surgery went well but that some babies will pass the first 72 hours after major heart operation and so we prayed this is all we could do after all our Aleah had been in God’s hand from the very start of all of this. It was very hard leaving her every night, and waiting to get that phone call that no parent wants to get, every time the phone rang my heart sank thinking this is the phone call telling us she’s gone. Our baby girl fought so hard and was so strong she overcame the odds and she made it through those first three days. Each day she continued to improve until she was able to come back to our local children’s hospital where she stayed in the NICU for another four weeks. When she came home after spending six weeks in the hospital and having a major heart operation at nine days old we were so thankful and happy to finally having her sleeping under the same roof that we were. Wow did we have a hard time adjusting to having a baby girl with so many medical needs. She had at least three doctor appointments every week and because she was so week and fragile she struggled to eat and gain weight. When she had her first heart operation we were told that she would need another heart operation between the ages of 9 months to a 1 year old to do her full repair of her heart. The day loomed in my mind, the thought of having to hand her over again not knowing if she would make it through, it weighed so heavy on my shoulders. The days and weeks passed by and when she was just seven months old it was decided that her health was deteriorating too quickly and she needed her second operation sooner than we had expected. Now I knew of some what to expect with the second surgery but that did make it any easier handing her over once again. I knew what she had been through before with her first heart operation and my heart ached at the thought of her having to recover from a second more severe heart surgery. The day came and I had to carry her to the OR doors, I wanted to turn and run away with her and keep her safe but I knew that this had to be done. It was one of the hardest things I have ever had to do. Hand over my baby girl to the surgical nurses once again and pray the surgeons would save her life. I handed her and her little frog pacifier over, gave her hugs and kisses and said goodbye. I just about collapsed there in the hallway; it was heart breaking thinking maybe she wouldn’t make it through. After several hours in surgery and the final word things went well we were able to see her. We walked in and it was the same picture, our little girl being sustained but so many machines and so many lines coming to and from her little body. We were in there about 10 minutes when alarms starting going off and the nurse went over and starting bagging her, she told the other nurse to get the doctor; my little girl was turning blue. My heart sank as I stood by her bed and just watched in horror. I prayed to God please don’t take her. They were able to get her stable and the alarms stopped and her color came back. I thought right then and there I had lost my baby girl. Once again she fought so hard and God intervened. Aleah had a much rougher time this time around. The kept her intubated for longer than normal waiting for a surgery date for her feeding tube. Many children born with congenital heart defects cannot sustain themselves by just bottle feeding because of their heart defects. Most kids have nasal gastric tubes but my Aleah could not tolerate them so they decided to put in a feeding tube in her tummy called a G-tube. She fought the vent so they had to keep her sedated with morphine until her g-tube surgery. She had her g-tube surgery four days after her heart surgery. She had been on the morphine for so long that when they tried getting her off of it she was having withdrawals; this was awful she would just scream and cry no matter what we did for her. Finally she overcame yet another of so many obstacles placed before her and with each day she became stronger. After two months in the hospital we were finally able to bring her home once again. We have been on this roller coaster ride for almost four years now, as Aleah will turn 4 years old on September 10th 2011. This life is one we would never want other parents to have to live but we are so thankful to have our little girl here with us. Aleah has taught us all to never give up hope, hope in God and hope in our prayers. Prayers of loved ones and the mercy of God is what got our little girl through all she has been through and us for that matter. God got us through the darkest of times, even when things looked hopeless. She has taught us what is most important in life and to cherish the little moments in life, appreciate each day you’re given and to never take for granted the ones you love. She makes all of us smile each day and we thank God and appreciate the simple things in life. Each day is a blessing to us and having her here is nothing short of a miracle.

Our precious Aleah now at four years old