Part 2..... (see below for part 1)

This also came from my MOD website, dated October 30, 2009.


For Kylie's funeral, I wrote her this poem and felt the need to share it here. Below that is a letter I wrote in a note form on facebook, and I would also like to put it here for safe-keeping and so that all things Kylie-related can be in one place. Writing is my only outlet, so this is where I will keep these things.

The Precious Gift (written by Amber Keith)
Your presence was a precious gift
Sent from up above
A little miracle for us
To always know and love
We never thought we’d have you
But we’re so happy we did
It’s just a little hard right now
To keep our feelings hid
We had to let you go
Back to your heavenly home
How I’ll ever fill the void
Only God above knows
It seems so unfair
For you to leave us so soon
But I know you’re in God’s hands
And you know that I love you.
We will always know you
As our first baby girl
And I will always look forward to seeing you
When its my time to leave the world.
I know you’re smiling down on us
And watching from above
And I want you to know we miss you
And are sending you lots of love
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The following letter was written October 16, one day after Kylie's passing.

Kylie,
Mommy is so sad that I had to let you go yesterday. Words cannot express the hurt I feel and the size of the hole in my heart. Your daddy and I had so many plans for you and your future. We waited five years to find out we were having you. If you could have only seen our joy when the doctor told us we were going to be parents- I loved you even before I knew, but at that moment, you owned my heart. Each doctor's visit and each time I heard your heart beat or saw you on an ultrasound, I was overcome with joy and happiness. Your life, however short it was, taught me a love and joy I never knew was possible in any lifetime.

I want you to know that right now is very hard for me. Last night, I cried out for you, cried to have you back, begged your daddy to give you back to me. Today, tomorrow, and the days to come, I know I will again cry out for you. I'm not trying to be selfish, I just feel like my job was left unfininished, like it was so unfair for you to be taken from me and your daddy. You see, we never thought we'd be blessed with a child, more or less the vision of perfection you were. For two precious weeks, you fought with more strength than I could imagine your tiny body having. For two glorious weeks, you were here in this world and you were here for mommy and daddy.

I will always remember your tiny little face- I studied it daily. You had your daddy's cheeks and facial structure, and his lips. You had my nose and chin- and they fit perfectly with that sweet set of baby blue eyes. You were, to me, the definition of perfection. Thank you for blessing me with the miracle of your life- you were so strong for us, and I am trying so desperately to be strong for you. You beat the odds so many times- they thought I would miscarry... they thought you wouldn't make it past a few days when you arrived... they thought you wouldn't make it through Wednesday night.

I knew Wednesday night, whether I wanted to admit it or not, that you were going to be leaving me. The surgery was just too hard on you. When you lifted your eyes to me yesterday morning, I knew you were telling me that it was going to be okay, and that you were going to be okay. And most of all, when I came back to your bedside with Grammy, I knew you were telling me it was time, that you had enough, that you just couldn't do it anymore. You made our decision for us, and I thank you for making it easier. I knew it was your time, and your daddy knew, and we had to let you go. I am so thankful I held you in my arms as your tiny little heart stopped. I had to hold you before you were gone. I had to know that you felt my arms around you.

I just wanted to let you know how much I love you and will always love you. You mean more to me than anything in this world. Your daddy and I are so proud of you and the strength you showed. You taught me more in 2 weeks than I have learned in my entire life. Even in your short time, you were taking care of your mommy. Your big sister would have been so good to you; I wish you could have met her before you passed. She would have loved you from the moment she saw you.

I want you to also know that you will always be my princess and my angel, and that I will never forget you. It is so hard right now, and today at the funeral home will be hard... and your funeral will be hardest. I'm so afraid that your daddy will have to hold me back from throwing myself in with you... I just so desperately want you back in my arms. We worked hard on your beautiful bedroom... I wish you could have come home to it. We bought you all kinds of beautiful clothes and toys and things.... I'm so sorry I couldn't have done more to help you.

I love you and miss you more than words can express.

Love always,

Mommy

A journey cut entirely too short... Part 1

So yes, as you should figure out by now... I am past my due date. So much has happened since the last post (a half year ago), that I don't know where to begin... so, I thought it appropriate to post a few entries today, copying and pasting from my blog with the March of Dimes... yes, you heard right... the March of Dimes... this entry is dated October 29, 2009:


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.

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 (Methyldopa, 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 methyldopa). 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 Procardia, and the ultrasound revealed my amniotic fluid was low, and the baby was weighing less than she should. He sent a referral to a pere-neonatologist, 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, my beautiful baby girl was born. Kylie Brielle Keith weighed 1 lb. 8 oz, and was 13 inches long. She was 26 weeks 6 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 anitbiotics 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 breastmilk (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 platelettes 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 judea (splg?), her small intestine, and a small part of the illeum (splg?). 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,b ut 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. I want to start a foundation, to help babies in the future survive this disease, as there is absolutely no funding available for research. 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.
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.

The picture below is my princess at one day old. This is one of my favorite pictures, because you can see how perfect all her features are... this is how I like to remember her most.