Our Letters of Hope

Tara was born on Sept 6, 2007 as a happy healthy baby girl with stunning blue eyes and strawberry blonde hair. Her being our 4th baby, I thought I knew all there was to having babies. Her delivery came fast and furious. My first contraction came at 12:27am and I knew she was coming soon. I told my husband to call the babysitter because we were having a baby. He called, and the sitter got there 20 minutes later. At that point I was walking around the house screaming that I needed drugs because it hurt. We rushed to the hospital and got there in only 5 minutes. My husband ran all the red lights and called the hospital on the way to get them to meet us out front. They asked how long I had been in labor for and he said almost 30 minutes. Needless to say they didn't meet us out side. My husband parked and left me in the car to go get someone. I got out of the car because I was at the hospital, I knew they had drugs some where and I was going to get them! I walked to the labor and delivery suites and was yelling and pleading with them to give me drugs. Please just give me drugs. They said that they can't give me drugs until I gave them a urine sample. I went to the bathroom to pee in a cup, but couldn't hold it because it hurt so badly. I asked my husband to hold it and as he was holding the cup there he also caught an unexpected surprise! Tara was caught by my husband in the toilet! She wanted us to know right from the start she would be one of those girls!

We took her to a lactation clinic when she was 8 days old. She was having a hard time latching on. She was our 4th, so I said if she can't get it, I am bottle feeding. I can't pump and put into a bottle, I am to busy! The lactation nurse took one look at her and said “she is a very sick baby”. Took her temperature, and it was only 94 degrees. She bundles her up and started running. I ran after her not knowing what to think. I was taking her into the lactation clinic. She said “follow me! If we don't get her to the hospital soon she is going to die”. I left my things, and started running after her (not an easy process 8 days after giving birth.) She ran her into the emergency room at the hospital that was across the street, and the doctor came right over. They started doing things so quickly and I just sat back not knowing what to think. I called my mom and asked if she could go in late to work (she is a nurse) because the baby is sick and they are doing a lot of stuff that I don't know about and I needed someone with me. She said let me talk to the doctor I tried to give the phone to the doctor and he said I can't talk now; I am trying to save this baby’s life. I gave the phone to another nurse that was walking by and said tell my mom what’s happening with my baby! She told her a lot of medical stuff, and I got back on the phone with my mom and she said "just start praying I will be there in 15 min." They told us they needed to transfer her to a hospital better equipped to handle her, and that they would have to air-vac her because she was to "critical". They got her all set up into the pod and I gave her a little hug before I placed her in there. If I would have known then this would be the last time I could touch or hug her for over 2 months I would have held on longer. She was air-vaced to Huntington Memorial PICU soon after. My mom rode with her in the helicopter because I have a huge fear of heights, and before we left I was already vomiting at the thought. My husband was working out of town so when he got the call he started driving, but it took almost 6 hours to get to us. My mom arrived with Tara and the pastors of our church met her with Tara on the roof of the hospital. The charge nurse that happened to be on call that night said "hey pastor Bob and Sherry" my mom looked at him and said "hey that’s my pastor"! He said "mine too"! This made me feel very comfortable right from the start knowing I knew someone there and I could get an honest answer from. Plus I really liked knowing someone that had my faith was there as well. We got all settled in and family and friends came and left, I kissed her head and went off to bed down the hall in the waiting room. This became our home. At some point during the night she crashed. Hard. It took over 4 hours to get her back.. I was not even notified for 3 of those hours because they had all hands on her. No one left. When the resident came in to let me know what was going on he said "some things have changed and your daughter has taken a turn for the worse. Do you have any family here?" I said "no I will try to call someone". I got a hold of my husband and told him to come in. As he was driving in I went to go see her. The nurse did not let me in yet as they were still working on her. She asked where my husband was I told her on his way, she asked if I called my mom yet and I said no. She said "you should call your mom" I said "is it that bad?" She said yes, "I don't think she is going to make it". I was shocked. She was having a hard time latching on, she wasn't a sick baby, she was a happy healthy baby girl. I called my mom, and she talked to the nurse and came right over. When my mom and husband got there we went into see her together. This was not the same baby I left just a few hours back. She was puffy and blue. She had a tube down her throat, IV's in her head and feet, an Arterial line in her leg, a central line in her chest, and an IJ line in her neck. All I could do was cry. It was serious and I could tell. I had no medical knowledge, but by how the doctor was talking to my mom and letting her know what was going on and her facial reactions. I could tell it wasn't good. The doctors told me I had to prepare myself because she wasn't going to make it. I told them "you don't know my God, he is bigger then this, she will live". I knew it would be a long road, but I knew she would live. The cardiologist came and met with us, and things looked grim. She had something called myocarditis, a virus that attacks the heart, her left ventricle was not pumping, and half of her heart was severely damaged. She was completely septic, and was in multi-system organ failure. She was on 24 drips at this point, and they just left the crash cart as a permanent fixture in her room. All of her organs were failing one by one due to this horrible virus that attacked her heart. Her lungs had failed, her heart failed, kidneys, liver, GI system, her brain was bleeding, things were bad. My Tara was a fighter and I knew it, she made it thru the first 24 hours, then 48, and so on. She would have good days and bad days, but she was strong, a true fighter. The nurses said it perfect “she is a sick, sick baby on a lot a lot of drugs." Then one morning our nightmare became worse…she stopped producing any urine, and she started going into SVT and her blood pressure was not able to stay steady. It was 8/16 at one point for quite awhile. They said there was a very real possibility for brain damage, even if she was able to make it thru this. She at this point was already there for 2 weeks. They decided the next morning they needed and even more "equipped hospital". After calling several hospitals, and no one being able to take her, they finally found a bed for her at Cedar Sinai. Just as we were getting ready to transfer the cardiologist called and asked if I had ever heard of ECMO, and mentioned the dreaded word Heart transplant.

They got her to Cedars and immediately took her to the operating room to put in a dialysis catheter in. The surgeon said she popped like a water balloon. This immediately took the pressure of her heart and we started seeing a big difference right away. God was truly there thru all of it. After we got to Cedars and put in the dialysis catheter, so much fluid was released that her SVT's stopped. The pressure was relieved off of her heart. ECMO was decided against (they were planning on doing it the morning after we transferred). Little by little things started to improve. There were still good days and bad days, but it seemed like the worst was over. We transferred back to Huntington Memorial after she was finished with dialysis, and it was our home again for another month. In total she was admitted for 2 ½ months. The virus left her with a disease called Dilated Cardiomyopothy with Congestive Heart Failure, but we were coming home. Coming home to a whole new world with Monitors, Medications, numerous doctors appointments, physical theropy, but we were home. Our family of 6 was finally going to be together. Our little miracle has been amazing everyone, including all of the doctors. She was sitting unassisted at 6 months, crawling at 8 months, cruising at 9 months, and walking at 12 months! Not bad for a little girl who was not going to make it thru the night! We have been back to the hospital several times for colds, and “tune ups” but she is just such a fighter! The last time we went we saw one of our favorite nurses. We talked for a bit about the first few months we spent in the hospital with them. I said you never really gave me statistics or anything, on what her chances for survival was. She said “there was no chance, she is truly a miracle, and there is no other word for her”. She is my miracle, my love, my fighter, my daughter.