Monday, August 9, 2010
Allyson Belle's Story
After Evie's death the doctor told me that I should wait for 6 months before trying again. I was heartbroken. I wanted to get pregnant right away. To make it easier on me my mom made a deal with Josh and I. She told us that if we waited 6 months she would pay for a laptop that was much needed for Josh to go to school. I was give an IUD. The worst 6 months of my life. Not only could I not get pregnant the IUD was so painful. Finally I got to take it out.
Josh and I had been trying for 3 months and finally we had good news. We were pregnant! Due April 14, 2009. I was so grateful and excited. I thanked god every day and prayed everyday that this one would live. I was very careful when going to California in August. Not wanting to miscarry or hurt the baby in any way. At the 17th week appointment we had an ultrasound. I was has a high risk pregnancy candidate because of the last one and they wanted to make sure by ultrasound everything was OK. We saw that the baby's stomach was right next to her heart. Another Diaphragmatic Hernia. I couldn't believe it. It was so unfair. The Doctors had lied. We hit the 2% chance dead on. I was so upset. Each time i prayed I would ask got to let the baby live until it was 80. I don't think god agreed. The 26 week appointment came and we found out it was a girl. I was overjoyed but still very scared. The doctor asked if I wanted to do an Amniosentices. The doctor was hoping to find something to explain why this birth-defect kept reoccurring. I Agreed. The doctor explained that the procedure wasn't painful and After it would not take much time to recover from. Boy where they wrong. It was very painful and I couldn't walk after. And through it all they didn't find anything to explain the problem. All the while I kept praying for miracle. My Sister-in-law suggested that I imagine that I could move the stomach and parts that were out of place and put them back into place. I was desperate. I was willing to do anything to help. One day in February I noticed and felt like I was going to explode. I had been working 10 hours 4 time a week and was exhausted.
Wednesday night the 25th after work I was having some really bad contractions. I had heard that taking a warm bath can sometimes calm the contractions. I took a warm bath but I still was in a lot of pain. I tried to call Josh but he was in class. I tried to call everyone in my family. My mom was doing a show, my dad at a Ute's basket ball game, my younger sister lived in Eagle Mountain, and my older sister was in class with Josh. After a while of not getting a hold of anyone, I decided to drive myself to the hospital. I chose to go to the IMC Hospital instead of U of U. U of U wasn't covered by my insurance and I didn't want to pay for it if it was a false alarm, Plus IMC was closer to me. I drove to the ER and waited in line. When it was finally my turn I explained that I was having really bad contractions and that I was at my 31 week of pregnancy. They immediately put me in a wheel chair and rolled me to Labor and Delivery. The Labor and Delivery nurses hooked me up to an IV and check my Cervix. They then told me that my water had ruptured and that I was leaking Amnionic fluid. They told me they we not going to let me leave the hospital until I had given birth. I was scared and I was alone. Finally Josh, my older sister, my mom, and my dad arrived. By then the doctor had given me to sets of steroid shots, that burned, and had called my doctor. My doctor called back and told them that I mist be taken to U of U because of the birth-defect.. I was lifeflighted to the U of U hospital and arrived 10 minutes after Josh had arrived. Josh had even missed the exit to 215. We could have drove there and have gotten there sooner. I then was hooked up to an IV and given medication to help stop the contractions. The contractions became less painful.
Thursday I felt fine and had a relaxing day. The doctors figured and were hoping that I would not have the baby for 2 weeks. What was I going to do for 2 weeks in the hospital. Thursday evening I was transferred to Recovery. Friday morning around 5 am, I started to have massive contractions. I called my mom to tell her. She asked if she needed to come now or if I thought I was fine, I told her I that I was sure it was just another false alarm. I then tried to go back to sleep. After a while of being in pain I rang for the nurse. She came in I told her what was going on. She then hooked me up to an contraction machine to see if I was in labor. I was and I then woke Josh. They then wheeled me back to Labor and Delivery. By that time Josh had called the family and told them what was going on. Josh didn't think that it was anything. He called his parents in Washington to let them know. By then it was 8 and I was in massive pain. My dad and older sister where holding me down on the left site and Josh was holding down the right. I told the nurse that I that I was wet and I thought that my water had broke. The Nurse then looked and saw the head of the baby. She then asked for the doctor. I pushed for 20 minutes.
Born 6 and a half weeks early, Allyson Belle Hensley was born at 9:04 am on February 27, 2009. She weighed 4 lb. 8 oz. and was 17 and a half inches long. Josh called his parents and told them to drive and that it was a girl. She was rushed to the U of U NICU. She was doing amazingly well. Before the transfer to Primary Children's they brought her to me and let me see her. She was perfect in every way. I got to hold to tiny hand. Josh and I would go back and forth from U of U to Primary's when ever we could. I felt much better recovered faster not having an eppaderal. I was up and going in no time.
Allyson was I fighter from the very start. on March 1,2007 Allyson went in for the first surgery to repair her Hernia. 3 hours of waiting and we got to see her. She was still open because was to small to close after moving around everything. She was closed a week later. She was in the NICU for 4 months straight. My dad came and read to her very night, The whole family rejoiced on every triumph. In April she was doing so well they were going to let her come home. I was so excited. The day after the news I called the NICU and was told that Allyson was not keeping anything down. she was throwing up bright green and yellow. The doctors did an x-ray and found that the patch put in when the Hernia was repaired had pulled away. Bake to surgery. I was Heart Broken. All our triumphs were about to be lost. The Surgeon was wondering if he would be able to repair the hernia with not being able to go trough the same scar. Or if he could have to make another cut. Going through the same scar would be better but it all depended on the scar tissue. We were never told what he was going to do but found out later that they were able to go through the same scar.
After the second surgery Ally was having a very hard time eating. She would hardly take anything by mouth and mostly was tube fed, We were told that she could not go home until Allyson did all her feedings by mouth and was off oxygen. I felt hopeless. I thought she would never come home. We Begged and pleaded for her to go home. Finally one of primary care nurses convinced the NICU to let us leave. Ally was on constant oxygen and was fed at night by a feeding tube. I learned to place the feeding tube when needed. I was also given strict orders not to take her anywhere for 2 months after. On June 13, 2009 we finally got to take Allyson Home. I was overjoyed. The Day before Evie's birthday. and 2 days before our 7th Anniversary.
The next 2 months were horrible. Don't get me wrong it was a joy to have Ally finally home, but I wanted to show her off and couldn't even leave the house. the Fourth of July passed and I could go anywhere. In august we Spent a week at Primary's Ally was not breathing well again. Finally September came and I was able to take Ally around. Josh, dad and I took her to ST. George in September. Josh went to look for snakes and dad and I to have fun with Ally. October came and Ally was a Ladybug for Halloween. November came and Ally finally was able to get the oxygen and get tube out. She was doing great. Christmas was a blast. New years was too and we finally took a family picture. Life was so great. In January we took Ally to Washington to be with her other Grand Parents. She met her Aunt Stacy and Aunt Michelle for the first time.
Febuary hit and Allyson got sick. She had a head cold and was having a hard time breathing. Every time she needed to go to the doctor it was on the weekends. I made an appointment with the after our clinic and went in. I was surprised to have Ally's primary care doctor for the check up. He told us that she was breathing harder than normal and he would feel better if we just went up to Primary's to check it out. He also was worried that Ally had caught RSV. If she had RSV it could be fatal for her. Primary's could do a chest x-ray and would be able to see what was the problem. Like our normal visits to Primary Children's Medical Center's ER it took forever to even see a physician. I understand that this was RSV season and ER was swamped as it was. I felt so bad for Ally. The striped her to just her diaper. She was exhausted and I knew she needed some sleep. The wait was horrible and poor little Ally cried and cried. Finally we did the chest xray. I was so convinced that Ally just had a cold. That was until we got the xray back. Apparently the patch on her diaphragm had pulled away again and some of her intestine was up. They wanted to to a test to make sure that was the problem. The test was that they would shote some kind of substance that can be detected by x-ray up the bottom. Luckily the nurse who did the test was my Aunt Tarina, She was very nice to Ally and felt offal that she had to do it. Ally cried through the whole thing. We went back to the ER to wait for the result. Ally finally fell asleep in my arms. Finally we got the results. The xray was accurate, Ally did have the patch pull away again. We then talked to Ally's surgeon and he said that surgery was needed immediately. He scheduled the surgery for the next day. We were put in a hospital room to stay over night. I told Josh to go home and that I would stay. I wasn't going to leave her for a second. The next morning we prepared for surgery. We asked the surgeon how long the surgery would take. He told us about 3-4 hours. Ally then went into Surgery. We waited in the waiting room. We got updates throughout the surgery. Ally seemed to be doing great. 3 hours past. The 4 and 5. Finally the surgeon came in to tell us what happened. He told us that the surgery was to advanced that he had to ask another surgeon to hep him. Ally had no Diaphragm that he could sew to. He had to sew the patch to whatever he could find. Ribs etc. I guess it didn't help that Ally was only born with 20% of her diaphragm. We went to the PICU waiting room to wait to see her. That took forever too. Finally I got up and went to the PICU to ask what was going on. I was told that Ally wasn't doing so good. During her surgery they had to deflate the left lung in order to get to the intestine. Her left one was the smallest and they thought that she would be ok with out it for the 3 hour surgery. But because of the 5 hour surgery her right lung collapsed due to stress. She was now on 100% life support and PICU was having a hard time getting her to breath. I Prayed for a Miracle. We waited and waited and were so nervous. Finally they let Josh and I see her. She was all swollen and looked just like Evie did before they took everything out. I immediately started to cry. I was so scared. The Nurse saw me crying and I told her of my first little girl. She told me this wasn't Evie and to keep remembering that. She finally got settled and things started to calm down. We asked to stay over night in one of the PICU's over night rooms. Josh didn't want to leave so he slept on the couch while slept in the room. Things began to become stable through the next few days.
2 weeks past and Ally wasn't improving. She was still the same. Thursday of the second week came and the doctors were worried and so where we. I'd pray every night that Ally would improve and still nothing. Ally always took her sweet time recovering. After the last repair it took her 2 months. I the while I was so calm. I was calm through everything with her. One of the doctors came in and gave use the Talk. The Quality of Life Talk. This scared me so much, The doctor told us that Ally wasn't improving. They had done all that they could think of to help her but they were stumped. They didn't know what or how to help her get better. I started Balling. I then called Josh's mom and told her to come down. This was at 9 at night. She was ready to come but Josh's dad told them that they needed to stay until 9 for his medication. Josh's mom said to wait a night and if she needed to come tomorrow they would. I then called my mom and dad. They came right away. We discussed it and all the while I was calm. I some how knew that she was going to be ok. Both of us slept there that night. The next day was the same. Josh then decided to start a fast. He made a event on Face Book and set the date for the following sunday.
Sunday came and she still was doing the same. It wasn't until Sunday night she started to improve. She started to get less support on the Oscillator and was starting to lover medications. By Wednesday she was taken of the ventilator and they gave her lest paralytics. She was coming back. Soon the paralytics were no more and she could move. When she woke up she was not happy. She would pout and wanted to be out. She started to cry every time she saw me. Her only happiness was watching Finding Nemo. She would watch it over and over again.
SHe finally was able to move to a Recovery room on February 27, 2010. Her first birthday. We made Ladybug cupcakes and decorated her room with Ladybugs. Still it wasn't very fun to have her Birthday in the Hospital. She became very fussy that day and we couldn't figure out why. It wasn't until I put my finger in her mouth for something that I realized she was teething. Cherry Flavored popsicles along with cherry flavored Tylenol become her favorites.
March finally came and she was released from the hospital on oxygen and a feeding tube. I was a little mad about the oxygen but it was worth it having her home. She left the hospital on Friday and not even 24 hours later she was back. Saturday morning she couldn't keep anything down. She would throw up every 30 minutes. It was horrible. We went back to the hospital. She was then given Pedialight for a whole 24 hours and seemed to be doing very well. 2 days after going back again they discharged us. What a Month.
Ally never was the same. After her first repair she never ate that well. She constantly had a cold and though much efforts we simply couldn't get the oxygen off. I wend to the nutritionist for help. They suggested a new formula. We tried it for 3 weeks and Ally simply hated it. I even tried to flavor it with Cherry flavor. No Good. We just kept on our old formula. I also tried to get to her eat baby foods. No go with that ether. She would eat them one day and hate them the next. The only thing I could get her to eat was Chetose Cheese Puffs. She loved them She still was so happy to see me in the morning though. She still loved to watch Nemo and we would watch it every other day.
April came and Ally loved Easter. She sat in a buster seat shaking eggs with candy in them. May also was fun. Going to the Zoo with all the cousins. Ally love her cousins and was often jealous and sad that she couldn't around and play with them. There also were many family reunions on Josh's side of the family. It was so fun to have Ally get to know people she had never met and that we didn't see that often.
June hit and so did trouble. Monday June 7th I got up and at 3 am to use the restroom. I checked on Ally and she was perfectly fine. Tuesday morning at 8:30 am I got up and got ready. Early intervention was to come that morning and I wanted to be ready for them. I went into to Ally's room to get her up. I came to her crib and noticed that she was pail white and that her eyes had rolled to the back of her head. She wasn't breathing. I immediately called 911. The asked what the problem was, where I lived and sent an Ambulance right away. I carried Ally to the living room and placed her on the floor. 911 told me to start CPR and talked me through it. I laid Ally on her back and gave her two breaths. The air going in sounded crackly. I then did 30 chest compression. I then rand to the door and unlocked it. Then I did another cycle of CPR. The paramedics finally arrived. The immediately started to continue CPR. I watched in Horror. All the while very calm. I then called Josh and told him what was going on. He then called my mom, Brother in law, and his parents who were driving home to Washington. The Police came and started asking me all sorts of questions. They asked me about her medications and feeding schedule. I was starting to loose it so they asked me who I needed them to call. I told them to call my dad. The paramedics then told me that they were going to take Ally to St. Marks Hospital. She still hadn't regained consciousness and they still couldn't get a pulse or heart beat. I went Along in the Ambulance
At the ER at St. Marks they finally were able to get a pulse and a heart beat. My dad, Josh, and my mom and Brother in Law had arrived. Josh and I started to cry. ER then told us that they were going to life flight her to Primary's. I wanted to go but I couldn't and Josh, Mom, Brother in law, Dad and I all drove up there. Josh's parents joined us. We then were told that Ally had suffered massive brain damage and was in a coma. I still hoped for the best. She had had a heart attack caused by not breathing. Doctors were not sure how log she was without oxygen. We prayed for a miracle.
Another day passed and she showed no signs of recovery. She had had a cat scan and most of her brain had saver damage. Her eyes were still dilated and the Neurologist came and did and exam. She was not functioning at all. No response. I then started to feel like she wasn't going to make it. I started having massive panic attacks and started hyperventilating. Thursday came and Josh and I decided that we were going to remove life support on Friday. She had massive brain damage and was in a coma. She would be a vegetable not being able to do anything for her self and She would have hated that. She might not have even woken up at all. I couldn't make her stay because of me. She needed to go and I knew it. My only concern we if I had made the right choice. The doctor told me that some kids after being taken off machines don't die for 8 or more hours. I just hoped she wouldn't take that long and she would chose to go on her own time and fast.
Friday came and also the time to say goodbye. I hated it, but knew in my heart that it was her time. All the while being calm.
couldn't I have had some kind of brake down. I guess it was God telling me that my decision was a good one. I thought we had an understanding that Ally was going to live until 80. I guess not. Michelle and Stacy flew in from Washington to be there.
Stacy sat in the room and held her. The nurse started to take things out at 3:00. They removed her heart medication. We wanted to take everything out at 4:00 p.m. but Ally started to fade before that. 3:30 hit and Ally had gone.
Allyson Belle Hensley passed away peacefully and on her own on June 11, 2010 at 3:45 P.m. I miss you everyday. Love you so much. Can't to see you in Heaven. "Allways Happy Always Smiling"