Faces of Loss, Faces of Hope

Amber

Mom to Kylie Brielle

October 1, 2009 to October 15, 2009

Toney, Alabama

After five years of trying to conceive, 3 years of fertility treatments, including 3 failed IUI's, we found out on our fifth wedding anniversary that we were pregnant- on our own! In the beginning, my levels (hcg, etc.) never doubled or did what they were supposed to. My doctor was expecting me to miscarry, but I didn't. At nearly 8 weeks, my baby had a strong heartbeat. After that, my pregnancy was very normal. I was given a due date of January 1, 2010, and I was ecstatic. My miracle baby, the baby we were not supposed to conceive, would be a Christmas gift for all of us. In order to understand the outcome, I think it is important to tell what happened in my pregnancy first. Sorry this is so long, but I need to tell all.

In the first 3 months of my pregnancy, I lost 20 pounds due to the pregnancy and illness. I just couldn't eat meat, or much of anything without getting sick! I loved fruit, and ate mostly strawberries, pineapple, apples, etc.

August 12, 2009- an ultrasound revealed my beautiful baby was going to be a girl- mommy's little princess! Everything was fine each month leading to this visit, and this was just icing on the cake. We already knew what we would name her: Kylie Brielle Keith. Now, we could finally go register for all of that wonderful stuff I wanted- bedding and all. My blood pressure was a bit elevated at this visit, but it was attributed to the excitement of finding out the sex of the baby. She was actually measuring 2 weeks ahead- I was nervous for a "big" baby!

My next appointment was September 10. My BP was 160/100, and I was put on BP meds (Methyl dopa, 2 pills a day- 1,000 mg total). Over the weekend, my BP stayed high, so on Monday, I had to go to L/D for monitoring- and of course, it was fine while I was there. By Thursday, I had to return to the doctor because I was sick- he diagnosed and treated me for bronchitis and the flu (I'm a teacher, so he wanted to be safe). He also upped my BP pills to 3 a day at this time. That weekend, I started having chest pains. I woke up one time each night with excruciating pain. The first time (Sat night) I was rushed to the ER and then told I had chest wall pain, given a pain pill, and sent on my way. The pains continued. I went to the doctor on Monday for a follow-up. BP still high, chest pains still happening at night, so he gave me a muscle relaxer. Each night, I continued to have chest pain. All day Wednesday, the chest pain stayed. On Wednesday night, I went to L/D again for monitoring with high bp, to be sent home a few hours later with a pain pill and a visit to the doc the next day. Thursday, I was put on bed rest and upped to 4 pills a day (2,000 mg of methyl dopa). That next night, my chest pains came all day and all night. We ended up in the ER again, to have a doctor tell me I had acid reflux and then gave me a GI cocktail- which made it worse. It was terrifying. We went back to the doctor the next Monday, who wanted an ultrasound the next day. He finally, on Tuesday, changed my BP pill to Pericardia, and the ultrasound revealed my amniotic fluid was low, and the baby was weighing less than she should. He sent a referral to a perinatologist, and said they would call me with an appointment. Because of the chest pains, he made me a cardiologist appointment the next day.

Amazingly, the new medicine immediately ceased my chest pains. No more. The next day, the cardiologist appointment went well. No problems, and he felt the problems were related to medicine. By that afternoon, however, I was feeling terrible. I was nauseated, and I started having pain in my lower abdomen and back, like cramping. We decided to go to L/D. When they laid me on my side to monitor the baby and my blood pressure, I got short of breath. I told them over and over how nauseated I was, and the nurse kept treating me like a whiny pregnant lady. The doc ordered another ultrasound. The US lasted 40 minutes, and the tech showed us a leak in my cervix and said the fluid was now "REALLY low". After the ultrasound, I got sick 3 times. The nurse came back in and said I was being admitted, so she hooked me up to an IV and said I'd be signing paperwork in case of an emergency c-section, but she said it was just precautionary. As she went to put the baby back on the monitor, her eyes got big, and so did mine- the heart beat was extremely slow. She told the other nurse to call the doc and to prep me for a c-section. In a whirlwind, I was prepped and rushed to the OR.... at 12:44 on October 1, 2009, my beautiful baby girl was born. Kylie Brielle Keith weighed 1 lb. 8 oz, and was 13 inches long. She was 26 weeks 5 days. She was rushed to NICU while I went to recovery.

For her first five days, Kylie was absolutely healthy, other than being preemie. She was GORGEOUS- she did not even look like what you expect preemies to look like- she just looked like a tiny, perfect baby. Her features were just perfect. She was breathing well- and for 4 days, she was on room-air only through her vent. We were amazed at her lung capacity. She was on antibiotics as a precaution, had a line in her tummy, and was in a special giraffe bed that helped keep her skin healthy. On day 3, she was given breast milk (1 ML) through her line, starting at noon and then going every 4 hours. She had a blood transfusion on day 5 (which is normal), so no food was given, but then was given a continuous feed on day 7. By day 8, foods were stopped completely.

By day 7, her tummy was black and distended, but not too much. Nurses still heard bowel sounds, so we were not too worried. On October 9, she was 1 lb. 13 oz. by normal growth- we were so proud! By day 9, she was what the doctor called "very sick." She told us about NEC, and that right now it was a "wait and see" situation. She put her on some more antibiotics and then dopamine. She received another blood transfusion and some platelets and plasma. She warned us that the dopamine would make her swell, but it would make her kidneys start working again, and then we would hope that her bowel did not pop or tear while the antibiotics were working. They gave her a 50/50 chance of making it. The pediatric surgeon was out of town, but she didn't think there was a need to call him just yet. X-rays showed that she didn't have a lot of free-air gas, and it didn't seem like a large portion of her bowel was dead, so they just continued on. On October 10, she weighed 2 lbs 4 oz- up 7 oz in fluid in one day. She was very sick this day, but they continued on, as there was no sign of a leak. That next day, she had not gained any extra weight- a sigh of relief. The doctors said she was getting a little better, and that it was a good sign. We were happy with the positive news, and her urine output was great. Maybe she'd weigh less tomorrow, we thought.

October 12, she weighed 2 lbs. 10 oz- a gain of 6 oz in fluid. She was so sick, and so swollen, I almost didn't recognize her. It broke my heart to see her so puffy- her belly was black and it was just terrible. The doctors still said the antibiotics could be working and had not noticed a perforation, so there was still no need for the surgeon. The next day, she only gained 2 oz and seemed to be doing a little better- more x-rays were done and it still didn't show anything significant. She also had her brain ultrasound- no brain bleeds at all! We went home that night confident that things were looking up, and we tried to get some rest. On October 14, we received a phone call at 5:30 in the morning from the doctor, who said the surgeon was being called in, because he thought that Kylie's bowel had ruptured around 3 this morning, based on the nurse's notes. We rushed to the hospital and found that she was still 2 lbs 12 oz, but she was needing more ventilator assistance- she had been taking 60 breaths a minute on her own, but now she was down to 20-30. She was really needing help from the machines, and you could see she was just miserable. The nurse suggested I sit with my hands on her legs to soothe her, as she was really uncomfortable. For an hour and a half, me and my husband sat with our hands on our precious baby, and she was calm- she knew we were there, and my baby who had done so well was now sicker than I could have imagined. At 12:00, they took her down for surgery, but they didn't start until 1. By 2:00, they were finished.

The surgeon came out and told us that he removed most of her jujunem, her small intestine, and a small part of the ileum, totaling 25 centimeters of dead and diseased bowel. He put a colostomy back in one side, and a drain on the other. He explained that he was unsure if the disease process was complete, but that if he had taken anymore, she would have lived on IVs for the rest of her life. He told us that the next 48 hours would be very rough- she would get worse before she got better. She lost a lot of blood in the surgery, but she received a lot, too. She would continue getting blood products through the night, and it would take about 24 hours for her kidneys to begin working again. He then proceeded to pray with all of us- my entire family, my husband's family, our preacher, and friends. He was supposed to leave town the next day for a recruiting trip but promised to check in throughout the night/day.

My poor angel was in such sad shape when we saw her an hour later- she had old-fashioned stitches that looked like a red railroad track- she had blood in her ostomy bag and blood coming out of her drain. She was puffy and swollen- not looking like my baby at all. But we prayed... gosh, how we prayed... The hospital let us use the overnight room in the NICU that night, because it was so uncertain... all night she was okay, but she never picked up on her breathing, and no one could tell with her drain if she was having urine output or not. They couldn't ever get a blood pressure on her, but they said it was due to her swelling and her low blood products they were catching her up on. By 8 the next morning, the surgeon made a surprise visit. He told us he thought the Lord wanted our baby, that he didn't think she was going to make it.... and that we would have to decide when enough was enough. It was the most heart-wrenching moment of my life.

When we went back to the neonatologists, they said she had less than a 1% chance of making it. Her weight was up to 3 lbs. 5 oz. (she should have been about 2 lbs by this time, naturally), and she was on 100% oxygen on the vent… she was basically being kept alive by the machines. They said there was a tiny chance she could pull through and make a miraculous change, but they weren’t hopeful. They told us there was no need to make a decision right away, but that we would need to be thinking about it- pulling her off the vent would come sooner or later. We did give consent to a DNR- it would have just prolonged what we knew would end up happening, and it would have put her in more suffering and pain- I felt it would have been selfish to try CPR on her. Our preacher came in and said a prayer with us over her bed, and we went to update our families. Around 10:30 that morning, my mom asked me to take her back to see Kylie, and I knew immediately upon approaching her bed that it was time for her to go. Her vent was still on 100%, and she was down in the 50s on her oxygen level, and her heart rate was dropping fast. My mom rushed to get my husband, and I looked at her sweet primary care nurse (a blessing in so many ways to us) and said, “It’s time, isn’t it?” She said “I think so, dear, I think so…” and with tears overflowing, I begged to hold her before her heart stopped… they pulled her monitors off (kept her vent in), turned off the screen (before they put her in my arms, her oxygen was down to 17 and her heart rate was in the 70s), and gently placed my precious miracle baby in my arms for the first time. I held her, and then my husband held her, and then I held her again, for nearly an hour before we gave her back to the nurses to clean up and get her dressed. My family and close friends were waiting in a small private room outside of the NICU. Shortly after, the nurse brought my beautiful baby to us- she was in a homemade pink dress and bonnet with tulle- a true princess dress- and wrapped in a blanket covered with pink flowers. We all took turns holding her, and the room was full of tears and heartache. We did allow the professional photographer from Now I Lay Me Down to Sleep to come in, and I did get some pictures back in time for Kylie’s service. Eventually though, I had to give her back to the nurse, and on her two week birthday, two short, precious, priceless weeks- I held her for the first and last times.

I am so pained by this loss, but in so many ways, I am such a proud mom. My sweet girl knew that we could not decide when it was her time to go, so she made the decision for us- she told us when enough was enough- and she was so strong and brave for doing that. She fought so hard for us, and she brought so many people closer together. It is amazing to me that people who hadn’t talked in years were hugging and crying and rekindling relationships/friendships/family connections. Nurses from the NICU, my antepartum wing where I stayed in the hospital, and my doctor’s office came to say their goodbyes. She brought me and my husband closer together, and she is still showing me every day so many ways that she has influenced our lives and our world. I couldn’t be more proud of her- she is a miracle for sure.

My heart is missing a chunk today and always will- the minute my sweet angel passed to Heaven, she took that piece with her. My heart aches for her. I cried out in the middle of the night for her. I begged my husband to bring her back, to just go get her and I would make her better, to let me hold her… I kept screaming “my baby” and “it’s not fair”… and inside, I still scream those things. I am miserable without her, and I know the pain will never completely go away. My biggest question is how do I go on? And why? WHY did this happen, and why was she taken from me? We went through so much to have her, to bring her here. Now, I have a complete, empty nursery at home, waiting for her, and she’ll never be there. Two baby registries full of beautiful baby items that I picked especially for her, my beautiful Kylie Brielle. My whole heart is empty. I feel so alone, so empty, so broken right now, and I am having such a hard time expressing how I feel.

Because of her condition, I began researching it the moment they told me about it. Now that she is gone, I know more about NEC and how dangerous it is to premature babies. Very few doctors focus on this, and it amazes me, because it kills so many innocent babies every year. The “wait and see” is not a productive medical approach, and with all the technology we have today, there should be more we can do to test for it, to treat it, to cure it.Since losing Kylie, I have joined the Resolve Through Sharing support group at my local hospital. I also joined a panel of people who study and make recommendations based on infant loss in our district to the health department, and I, along with my bereavement group leader, held Huntsville, Alabama’s first annual October 15th National Infant and Pregnancy Loss Awareness Day ceremony. Now, I am working on a fund at our hospital to provide bereavement resources in Kylie’s memory to parents who are leaving the hospital without their pride and joy, and I eventually hope to expand that to a non-profit that will provide resources for all hospitals in our area. Last year, we made a team for the March of Dimes March for Babies, and we had over 66 walkers and were the top family team in our area with $8,000. This year, we are walking again: Team Angel Kylie’s Hope (and Gavin’s Miracle). Our goal is to pass $8,000 and really help raise money for all babies to be born healthy. I have many goals to help others in Kylie’s name, and hopefully, I will be able to keep her name and legacy alive.

As painful as my life is right now, and as hard as it is to go on without my angel, this one goal is what is keeping me going. Kylie would not want others to suffer, and she would want me to help in every way I could. I feel she is pulling me to do this, and I will do anything for my baby. My love for her existed before she did, and my love for her will exist until I cease to live. I have never known this kind of love, and for that I am grateful.

Amber blogs at: http://angelkyliesmommy.blogspot.com/

and can be contacted at: angelkyliesmommy@gmail.com