Amanda

*** Jackson Carl arrived on November 2, 2007 weighing 8 pds 3.6 oz and 21 inches long *** My name is Amanda and I am 31 years old. I live in Virginia with my wonderful husband of 13 years Travis. We have 3 beautiful children. Brooke who is 10 and is in the 5th grade. Zachery is 7 and is in the 2nd grade and last but not least our precious Sarah. Who will be starting Pre-K in the fall at same school as brother and sister. Sarah is our miracle angel sent from above. She was born at 26 weeks weighing 2 pds 2.3 oz. and 14.5 inches long. She spent 78 days in the NICU at Johnson City Medical Center in Johnson City, Tn. Only given a 10% chance of living and if she did was expected to never come off the ventilator. She proved them wrong on both accounts. She is now a vivacious 4 year old with only a few medical problems such as chronic lung disease, very mild Cerebral Palsy and a few developmental delays and wears SMO braces on her feet for her ankles. Which the wonderful Shriner's Hospital in Greenville, South Carolina provide her with. She also receives Physical Therapy twice a week, Aquatic (pool) Therapy once a week and Occupational Therapy once a week.SARAH'S BIRTH STORYI found out I was pregnant with Sarah when I was 5 weeks along. I was surprised because she was not planned like my other two. I was having a very typical pregnancy up until 16 weeks when I started having stomach pains. An ultrasound showed that I had placenta previa. My previous two pregnancies I had hypertension and was put on medication. Also with my first pregnancy I was hospitalized 7 times for preterm labor. This pregnancy was perfect so far. No swelling, no high blood pressure, and I had only gained 2 pounds. The night before Sarah was born we went to our first childbirth class at the hospital. That night I had trouble sleeping and when I woke up that morning I noticed I was having braxton hicks contractions. I got up and got ready to go to work and we took the other kids to the baby-sitter. When we arrived at work I didn't want to go in so I told my husband lets just go to the hospital and have these contractions checked out. Little did I know that not wanting to go to work would not save only my baby's life but mine also. I was told after the delivery if I had went and worked just two hours on my feet both of us would have died. When we arrived at the hospital I was taken up to Labor & Delivery and saw one of the nurses from the childbirth class. She said jokingly your not supposed to be here yet. They hooked me up to the monitors and noticed I was contracting every 3 minutes. The nurse thought I was probably dehydrated so she started me on fluids. They couldn't get ahold of my doctor so another doctor came by and started me on magnesium sulfate. I knew from being on this before that I would be there for a couple of days so I sent my husband back to work. About 12:30 that afternoon my doctor comes in and gives me morphine and checks me. I was not dilated but still contracting. He proceeds in telling the nurse to schedule me an ultrasound for that afternoon or tomorrow. She told him that she had already scheduled me one for that afternoon. When I go down for the ultrasound the tech is quiet the whole time. When she leaves the room she tells me that she is bringing somebody in to set with me. I was thinking the whole time why. I have had numerous ultrasounds and never had to have anybody set with me while they consulted with the radiologist. The whole time in there the nurse kept asking me if I was all right. When she comes back she tells the other nurse that I can't go back in the wheelchair I have to go back on a stretcher. This is when my mind started racing. I thought maybe I had placenta previa so bad they didn't want me to set up. When I get back up to Labor & Delivery there is my doctor saying something about an emergency c-section. I found out I had a significant placental abruption. I went into shock. Here I was her all alone with nobody to comfort me. My doctor tells me to call my husband immediately. When I got a hold of him at work I told him to come to the hospital quickly that they were doing an emergency c-section and that they would explain to him when he got there. He was 45 minutes away and would not be there in time for the delivery. My mind was racing again I was thinking I know I will be all right but what about my baby I was only 26 weeks. I heard the nurse say that they couldn't fly the baby out because of all the rain and fog. I delivered in a small community hospital. (Wythe County Community Hospital) They prepped me for surgery and took me to the operating room. When the baby was born they told me it was a girl (we didn't know what we were having) and I remember crying and saying that is what we wanted. I remember hearing her first Apgar score was a 2. I did get to hear a small cry. She was immediately handed over to the pediatrician to be worked on. Up until this time I thought she was going to a hospital a little over an hour away but I found out in the operating room that she was going to a hospital over 2 hours away in a different state and that it was going to be another hour before they could even get there and take over. The first two hospital's that they were going to send her too the NICU's were full. The ped's worked on her hand bagging her for an hour until the NICU team from Johnson City Medical Center in Johnson City, Tennessee arrived. When I was being taken back upstairs and rolled off the elevator there was my family there. They wheeled me in to the area where I could look through the nursery windows but they wouldn't open the blinds because they were still working on her. They proceed in taking me to my room. I found out later that my husband didn't know anything until 6:30 that night. Sarah was born at 4:23 p.m. The pediatrician that had been working on her came in and talked to me and my family. About an hour later she was stable enough for transport and the transport team came by my room with Sarah in the transport box. They went over the basic NICU stuff and asked me if I wanted to touch her. She was so tiny when she was born she weighed 2 pds 2.3oz. and was 14.5 inches long or 989 grams. She had so many wires and a tube in her mouth. I got to touch her leg and then they had to leave. About 9:30 that night the neonatologist calls me and tells me that they just finished admitting her and getting her settled in. He calls me back at 12:30 in the morning and gives me another update saying that she was down to 40% on her oxygen considering she was on 100% (dangerous) when she arrived. The next two days were the hardest not being able to see her. I kept in touch by phone and found out that she had a PDA (patent ductus arteriosus). This is an open blood vessel near the heart and lungs. I was told that they had started her on the medication Indocin to try to help close it. Thank goodness 3 does of the medication closed it. As soon as I was released I went to go see her with my husband and my mother by my side. The first sight took my breath away all I could do was cry and my heart just crumbled. She was so pitiful looking tubes and wires and pumps everywhere. She had an olive color to her. The best I can describe her is that she looked like an Egyptian mummy. She was bruised all over from the delivery and was covered in hair (lanugo). Her ears were still molded into the side of her head. I didn't care what she looked like she was my precious little girl. Sarah started out on the jet ventilator she never could handle the conventional ventilator. On day 5 of life I got the dreaded middle of the night phone call. I was staying at the Ronald McDonald house. The phone call was to let me know that they were having to insert a chest tube and then they proceed in telling me that she had went into cardiac arrest and they had to do CPR on her. My sister was with me when I got the news I called my husband and told him what had happened and I can remember him crying and saying God if your going take her take her now I can't bear this anymore. I went to the hospital about 2:00 that morning I just had to see her and check on her but when I got there they were working on her again and I couldn't see her. We were whisked away to a nearby room. They were having to insert another chest tube in the other lung. We were took to a room and I remember my sister asking one of the nurses for a chaplain talk too. The chaplain spent about an hour with us then the resident doctor comes and gets me and said that they had her stable for now but still very critical and what this meant was that she would come home on oxygen. She shows me her x-rays and tells me she had severe PIE (pulmonary interstitial emphysema) . A complication in which there are many tiny tears in the air sacs or small airways of a baby's lung, causing air to leak out of them. She told me her lungs looked like broken glass and she showed me the x-rays they looked like broken ground up glass. One of my hardest decisions I have ever had to make was after a week in the Ronald McDonald house I decided I had to go home I had two other children to take care of and I was missing them so bad. I felt as if there was nothing I could do for her and that she was in good hands. I decided that I would make the almost 5 hour roundtrip to see her everyday. I was on such an emotional rollercoaster. I felt as if I was grieving even though she was still alive. I couldn't walk by the baby section in the store without crying. I felt like why me why my baby. It was if somebody had just pulled my heart out of my body and stomped on it. I felt like stuff I thought was important was not important anymore. It seemed all I could do was cry. I cried at her bedside, in the waiting rooms during procedures, in the hospital cafeteria and I cried every day leaving the hospital and all of the way home for 5 weeks. We just never had a good day. Another hard part I had to deal with was where would we bury her and how would we pay for it if she didn't live. A feeling no mother should ever have to have. Sarah had still more critical weeks ahead. They had to reposition her chest tubes because she was requiring 100% oxygen for almost 24 hours. Once they had to redo her endo tube 3 times in 4 days because it kept clogging up. She also developed a pneumothorax (large pocket of air in the lung if life threatening if not immediately taken care of). They resolved this by inserting a needle in her chest and drawing out the air. Sarah had a high bilirubin level and was put under the lights for 16 days. She had numerous lung collapses. Then they would over inflate. It seemed like everytime we went to go see her we had to wait at the door because they were always working on her. ALWAYS for something. The average time for chest tubes is a couple of days. Sarah's stayed in for almost two weeks. Sarah was given steroids for her lungs doctor said she had been on the ventilator for too long. She was given 3 days worth and had actually made it onto the conventional ventilator when she took another turn for the worse. She was fighting the ventilator and caused both of her lungs to collapse at the same time she had also developed an infection. Took two nurses to hold her down through this. Her blood gases looked horrible so they put her on the oscillating ventilator (high frequency ventilator) We were told 10 years ago when they did not have this technology that she would have never survived. The first month even the nurses were not optomistic about her. Sarah had over 15 blood transfusions because they were taking so much out of her causing her to have low sats and requiring more oxygen. They were having to do blood gases sometimes every two hours and she just couldn't make it fast enough. She also had over 60 x-rays. One time she had so many IV pumps in her bed you couldn't make her out. I remember there were four of them holding, Lipids, Tpn, Blood for her transfusion, pain killers, antibiotics, and other medications. Sarah stayed sedated for almost 4 weeks she couldn't handle any stimulation not us even touching her. Once when we were there they were working on the building outside of her window and the nurse had to beat on the window to make them stop because her poor little body just couldn't handle the noise Her oxygen levels just kept going up and up. Sarah was not able to get any type of feedings of mama's milk until she was 3 weeks old. Then it was just 1cc over 3 hours. We also had several NEC scares. There were times when she was doing so bad that I would have to make two trips out there a day I had to go back and get daddy. Then we would have to get a hotel room and stay the night. . Sarah also had a NICU buddy there were days when him and her would compete by setting alarms off all day long. I remember one day when I couldn't make it to see her I called to check on her and the nurse said that they had her off of the ventilator and onto CPAP. She had spent 5 weeks 1 day on the high frequency vent. I was so thrilled it was her sister's birthday. The next day we went to go see her and it felt so good to see her without a tube down her throat. They didn't think she could do it but she was showing them. Finally after 36 days I got to hold my precious baby. I can't even describe the emotions. We done the kangaroo care and it was heavenly. She also got her new condo that day an isolette. She had stayed in a radiant open bed warmer up until then because she was so sick and needed constant attention. After a week on CPAP Sarah was but on the nasal cannula once again they didn't think she could do it but she was showing them. The nurses and doctors were so happy for her. Sarah was finally moved out of the critical care room after 8 weeks. It was then we were told by a doctor that they had only given her a 10% chance of survival that first week because her lungs were so bad. He said she was their baby and that she was the sickest they had seen in a long time. Sarah also had to battle low platelets for which she was transfused twice, another infection, ROP, and reflux. She also had the normal apnea of prematurity. Once when I was holding her she had a spell and the nurse grabbed her from me and couldn't get her breathing by stimulating her so she had to put the oxygen mask over her. Sarah was 59 days old before she got her first bottle feeding on Daddy's Birthday. I was so nervous feeding her a bottle. She took one ounce and went to sleep. About 2 weeks before she came home a nurse told me that that one particular doctor would always stop by her isolette and shake his head because as sick as she was she should have never come off the ventilator going by all they had ever seen. We were told by the doctor that God and prayers was the only thing that saved her. There were thousands of people praying for her. Then one day we went to see her we also had our CPR class that day. When we were finished with the class we go back to visit her before we leave and the nurse tells us that she has good news. She said we were rooming in tonight I about hit the floor. We weren't ready we had nothing with us so we had to go all the way back home and get our stuff. That night when we arrived back at the hospital we meant with home health to discuss how to use the apnea monitor and the oxygen. That night before we were moved up to the pediatric floor to do our rooming in Sarah came off of 24 hour continous oxygen. We still had to use the oxygen for feedings. Sarah spent 78 days (11 weeks) in the NICU coming home on oxygen for feedings, apnea monitor and medication 12 times a day to keep the fluid off of her lungs. Sarah lost her oxygen 2 months later and the monitor about 6 months later. Having a preemie ( critical one) is the hardest thing I have ever had to do and we owe so much to the people of our community for all they did for us. The vast majority of them strangers. ***THIS STORY IS PROPERTY OF ourpreemiesarah AND CAN NOT BE COPIED OR USED WITHOUT PERMISSION***