I have been asked to share my story with you and have been trying to figure out where to start. I’ve shared my story on many preemie sites but it was pointed out to me that I edit out my inner thoughts and feelings. I guess that’s how I protect myself from going back to the fear and pain that accounted for the first 97 days of my son’s life. You see, that’s the most important thought in my head....my son is alive. I celebrate that reality every day! Keagan is 17 months old, wearing size 3-6 month cloths, has nearly no body fat and is walking and talking. When people see him they are startled and ask how old he is. When I tell them he is 17 months they usually look shocked and stare at him...then I feel like I have to explain...I tell them he should only be 14 months. This extra information usually stops further conversation, or leads to the usual “What do you mean?”. I like the times the conversation ends, it means I don’t have to get into my story with strangers. Today is about celebrating the lives, however long or short they are, of preemies...so here’s our story.
I am not young...I was 34 when we decided to get pregnant. We were so excited and wanted to do everything right. We went to the Dr and asked what we needed to do to have a healthy baby...”no alcohol, start vitamins, eat healthy”...I followed everything I was told. That was in September 2009, by the beginning of December I knew I wasn’t alone in my body anymore...I told K he was going to be a Daddy. I was so sure that I told him before I even had confirmation from the Dr. I was so happy I was jumping out of my skin! We told everybody we could. By Christmas I couldn’t fit into my jeans anymore and I was more excited! We started buying baby clothes and everywhere we shopped on our Christmas holidays ended up being about our baby.
I loved every moment of being pregnant...every little change in my body...every movement I felt...this was what I’d been dreaming of my entire life...I was going to be a Mommy!
I read every night about what size my baby was, what was developing, what I should do and not do, and I did it. I went to my appointments and had tests...all on time. We went to our 19 week ultrasound and watched our baby do summersaults, we found out it was a boy! Everything looked wonderful (we were told). We were getting more excited and filled with joy. We ordered his crib and decided on a nursery theme. When we went for my 5 month clinic check up, my blood pressure was a bit high. This wasn’t anything that concerned me as I’ve had elevated blood pressure for years. Work was stressful and I knew that was a factor. We were told that I would need to see my Dr in 2 weeks to have my BP checked again. We hired a Doula that week, I have a crazy fear of hospitals so working with a Doula seemed the best idea. We started prenatal class a week later, one of the other moms was swelled up like a balloon; she pointed out her feet and said “I have preeclampsia if you swell up like this go see your Dr”. The very next day I noticed my ankles swelled a bit, but wasn’t too worried, this happens in pregnancy, right? I’d been sitting at my desk for 6 hours, so I got up and moved aroung. Then the next day, my co-worker noticed my hand swollen. Ok...now I got worried. K was working though, and I didn’t want to worry him so thought I’d wait till after work to go to the hospital, I truly thought they would tell me I was overreacting and to go home.
When I got to the nurses’ station, total and utter panic set in. I could hardly force the words out of my mouth to tell them about the swelling. They took me to a room, took my BP and called the Dr. I was to remain and be monitored for ½ hour. I calmed down a bit and they took readings of my baby and kept checking my BP. It wouldn’t come down...the Dr came and told me he wanted to keep me overnight for observation. Maybe I would get some time off work? Maybe that would help. I didn’t get the impression that there was any huge concern, more that they just wanted me to calm down...so I tried doing that. I was 25 weeks pregnant and had a long way to go yet.
I had an uneventful weekend, but was kept for testing the next week. Tests showed my liver wasn’t working 100% but the OB wasn’t concerned about my baby. Ultrasound, that week, was ok we were told, though in retrospect it was a bit odd, it said my due date was mid September instead of late August. But Dr’s know best...right? I stayed in hospital here, for one week. A new OB came on and did a complete exam (the other one never got close enough to even touch me), by the time he touched my big toe he had decided that I needed to be in another hospital. I cried, why the concern now? Nurses here told me I would be put in a quiet dark room and given meds, all would be ok and I could expect to be back here in a few weeks to wait out the rest of my pregnancy. The next hour was a whirlwind. Steroids, IV, room transfer, family coming to see me, K told not to go to his truck to get my cloths, not to start driving because they didn’t know where I was being sent yet. I was terrified, I felt like nobody knew what was going on, least of all me. As I was being loaded onto the gurney, K was told he could fly with me, and that I’d been accepted to the Foothills in Calgary. Off we went, my first ambulance ride, my first air ambulance ride, scary yet I felt like someone was wrong...I could feel my baby kicking and moving...I really didn’t believe anything was wrong, how could it be when it didn’t FEEL wrong?
Calgary - This is the hardest part of my story. The part I don’t know how I will ever tell my child. I arrived late Friday night, was monitored and put in a bed around 1am. K couldn’t come in; he slept in a chair in the hall. My hero. 9am Saturday we had an ultrasound. Dr J was a lovely lady, but her face said more than she did. She showed us that our baby boy had very little fluid and that the flow through the placenta was reduced...by a lot. I stopped thinking this was a mistake...this was serious. She explained that we were going to try buying our baby as much time as possible. When pressed for an idea, she said we were going to try for a few more days but would have to take it one day at a time. I was taken back to my room where I bawled. I felt like I was failing my baby, I was failing K, I was failing the first test of motherhood...I was not going to be able to be deliver my baby at 9 months. We sat on my bed and cried. My heart was breaking. Our parents came to visit (both sets having traveled a long way) and we didn’t have the heart to tell them the bad possibilities...so we told them what we could without voicing the negatives we knew were serious possibilities, neither of us willing to say the words. I lost track of time a bit, there were 3 days of worry, 3 days of bawling at the drop of a hat, 3 days of watching monitors and listening to baby. I was so scared that I had the talk. You know, where I told the love of my life that if he had to choose my life or the baby’s that I wanted the baby to live. I started, and made K do it with me, thanking God for things. “I’m thankful that we saw him move” “I’m thankful that I met you” “I’m thankful that we got another 4 hours of him inside”. This was how I got through. I was taken up for monitoring one night, nurses took my phone (they said K needed sleep so wouldn’t let me call him), and I laid in a tiny bed with BP monitor on my arm and monitor on my belly listening to baby, both going off every 10 minutes...and on the other side of the curtain were mothers in labour. When they cried in pain, all I could think was “you’re SO lucky”. I was 26 weeks pregnant with my first child and was getting matched to blood donors “just in case”. Monday night I was moved to another room, K was given a cot so he could stay...surely this wasn’t a good sign. I was hooked up to monitors and couldn’t move...not even my foot, otherwise baby would shift and we would have to set up again. He liked to dodge the monitors. He sounded like a choo choo train....steady in the distance and I was reassured by hearing him. Nurses were outside my room watching my readings the entire time. When baby started dodging the monitors, the tests started up again. Dr B would bring the ultrasound machine in and check for baby’s vitals. We did this every ½ hour until 2am. Then she allowed me to sleep a bit.
Tuesday May 25, 2010 - 27 weeks 2 days pregnant THE scariest day of my entire life. Doctors everywhere. Dr J checked baby again and told us that blood flow had reversed, baby was no longer getting anything through the placenta...she was calling the team for a meeting. Dr M came in, told me he would be delivering baby at 3:30. Dr W came in for permission to get samples for Preeclampsia studies. On and on the list went. My mom was called; she had 3 hours before the operation she could be there in time I thought...I prayed. I wanted my Mommy in a way I hadn’t felt in years. 1:15 something changed, I was rushed out of my room into the surgical suite. K was told to wait in the hall. I was being given a spinal, Dr M was fighting with the anaesthetist about putting me under...nurses counting tools...at one point I saw K in the window. Then I was lying down, arms strapped, curtain up, K was brought in and by 1:48 my baby was out of my body and gone from the room. I didn’t see him. I was so terrified that something was wrong. Then there was the feeling of having stuff shoved back into my body...I didn’t feel pain but I certainly felt my body being shaken and shoved in ways that didn’t seem right. Then I was wheeled into recovery, where the Neonatologist came, finally, to tell me about my baby. K had taken a couple pictures to bring me. Keagan was SO tiny, 640grams (less than a stick and a half of butter) and not quite 12” long. But he breathed on his own. Dr T said he was a superstar! I breathed for the first time in days. I was taken to see Keagan on route to my room...gurney and all.
NICU - This is where we spent the next 97 days, different hospitals but same story. I could write a book about these 97 days, but I’ve kept you reading a long time already. What I will tell you is the NICU is a very scary place. You can watch your baby, sometimes touch them, and sometimes hold them, but NEVER without permission. I often say I was blessed to be able to watch my son develop in a way that I never would have if he were in my womb. Though true, this is NOT something I would wish on my worst enemy. My son didn’t have all layers of skin like a full term baby, I could not stroke him, and too much stimulation could cause him to Brady. Brady is when they forget to work and their heart stops...yes, stops. I will never forget the terror I felt when Keagan bradied while I was kangarooing him...NOTHING prepares you for that. To see you child hooked up to tubes/ wires/ breathing aids/ feeding tubes...to know that without them he would die, no parent should ever have to live that. Preemies don’t have body fat...not micro preemies anyway. They don’t have cheeks, chins, bums or wrinkles...anywhere. We thought Keagan looked like an old mad and dreamed of the day when he would have some fat and definition. In the NICU you celebrate things that other parents take for granted. We have a certificate from the day Keagan reached 1kg. We celebrated the day we saw him without his c-pap hat on, the day he grew eyebrows and eyelashes, the day he turned when he heard our voices...things that full term parents don’t think of and the things that some prem parents never get a chance to see. We also had hard days, days that we wished we could offer up our own lives so that Keagan could be pain free, that just breathing wouldn’t be so much of a chore for him let alone the constant needle jabs and blood samples. The excitement when he was transferred to our hospital because he was doing so well, the Dr’s were talking about release! Just when you let your guard down in the NICU, something happens...we were getting the nursery ready anticipating having our baby to ourselves when Keagan got sick. So sick he was airlifted back to Calgary. We were actually relieved to have him transferred back to Calgary....sick with worry and terrified but thankful that his Dr knew enough to send him to the pros.
This time there were more tests, more needles, more of everything...but our baby wasn’t allowed to feed. Imagine holding your baby (all 3lbs of him) while he cries for food, but you can’t give it to him. I felt so helpless; I had to leave sometimes just so he wouldn’t see me cry. I called the NICU at all hours of the night because I couldn’t sleep, I spent nearly the entire day and evening at his bedside, I couldn’t be away from him without worrying. My baby was sick, and not just from being premature. Nobody could figure out why or how to treat it...I was a wreck. Then there was surgery on hernias, our poor little boy. For some reason after the surgery his tummy issues cleared up rather quickly and we were on the homeward stretch again. On August 27 2010 we took our 4.5lb baby home from the hospital. You would think that our world would be perfect. Suddenly we had a baby without monitors, no medical team to turn to, and a baby that still needed meds and would need follow-up for at least the next 5 years.Our son is now 17 months old, 14 corrected. Corrected is what he would be if he was born on his due date and the date that development is based on. Keagan is our precious little miracle and I thank God every day for his life and for mine so I can know my sweet baby. Keagan is developing as he should be and amazes people who meet him.
We are one of the lucky families and we know it and don’t take it for granted not for a moment. Those of you who have preemies, you know what I’m talking about. Those that don’t have preemies...maybe this will help you to understand preemie parents better. Yes we seem overprotective, we are. We have to protect our babies from small germs because they can cause huge problems, and we weren’t able to protect them from the pain and suffering they endured to get where they are. Yes, we tend to hold our babies more than termers...we didn’t get to hold them at birth like you did and after all the pokes and pains from the hospital, maybe they need it a bit more. Try not to complain about being 9 months pregnant when you’re big and sore...there are Mommies out there that never have and never will experience what you are going through and they would give everything they own if only they could. Don’t look at our little Miracles or us with pity, please look with amazement at what God, amazing medical staff and super strong babies can do.
Today is World Prematurity Day, please celebrate the lives of preemies everywhere...those with us and those that God took to be with Him.