Thursday, June 30, 2016

Tulip Tales: Billy

Today's 'Tulip Tale' is an especially difficult one. We know as parents that pregnancies don't always go as planned, but some things you can never quite prepare yourself for. Please take the time to read Adina's story. It is heartbreaking, yes, but it tells so much about what it means to be a mother, and the terrifying beauty of parenthood.


The majority of my life, I had myself and my entire circle of friends and family convinced that I wasn't having children. Ever. Then, at the age of 33, something in me changed and my heart yearned for a tiny human. I wanted to be a Mommy.

I was very fortunate to become pregnant after just 4 months of trying. The day after my 34th birthday, I saw the positive sign on my test. We were beyond excited! Thrilled was more like it! My doctor confirmed it two weeks later. And set up my first ultrasound for May 30th. That put me at 19 weeks. 

It seemed like an eternity for that day to arrive, and when it did I was a nervous wreck, but also anxious and excited to find out the sex of the baby. Lying on the bed at the ultrasound department, holding Will's hand and staring at the screen, waiting to see the first ever glimpse of our baby, and to hear the heartbeat for the first time is a moment I will never forget. 

And then I heard the words "It's twins!" Wait? What? No that can't be right. I was bawling. I wasn't expecting this nor was I even remotely prepared to hear those words. 

Before this news had time to sink in, I heard "Oh no. Oh no. Oh no." My heart sank. What was she seeing? What was wrong with them? And then, "There's a third baby. It's triplets!" I couldn't breath. I couldn't look anymore. I covered my face and turned my head away, sobbing. Will was silently leaning against the wall, unable to move. Mom came to me and kissed my forehead and whispered "It's ok, it'll be ok."

But it wasn't ok. 

After several hours of lying on my back and several different people looking at the babies, we were given the most horrific news of the day. 'Baby A' was really sick and had very little amniotic fluid. A club foot could already be seen. We learned that the position the baby was in made it impossible to determine the sex, and because there was so little fluid, the chances of turning was slim. So 'Baby A' remained Baby A. 

We were told that Baby A had a congenital heart condition called Hypoplastic left heart syndrome. There was no chance of survival. But every day that Baby A stayed alive gave the other two babies a better chance of surviving. 

How in the name of everything good, could this be happening? How could a day that started off being so exciting end in such despair? How was I going to get through the rest of this pregnancy? What did I do wrong? Why, why, why????????

Regular appointments at the maternal fetal assessment clinic became routine. Every time I saw three beating hearts I let out a sigh of relief. We're good for another day. The babies have another day to grow and develop. It was nerve wrecking and scary and beyond worrisome.  

Every day I woke up with the thought "Is today the day that we lose Baby A?" I hated thinking it but couldn't stop the thought from entering my mind. But then I would see them on the screen and for a brief moment I would allow myself to feel ok and excited again. I would lay there and watch Baby B and C, both boys, be so active and I would pray that they would be ok.

I lived as normal a life as I could. I rested as much as I could. And I tried to push all the scary thoughts away and enjoy being pregnant - a near impossible task. And then, during a regular appointment, I was told that my water had broken and I was admitted right then and there, on strict bed rest. I was 24 weeks.

On the morning of June 11, 2015 at 25 weeks plus 3 days, I woke up at 4:00am with cramping and spotting. I knew deep down that something wasn't right. At 6:30am, after an internal exam, my fears were confirmed. I was two centimeters dilated. Once again I was crying, they're too little, it's too early, no, no, no!!!!!!!!!!!

I was told throughout the day that I wasn't necessarily having contractions. I could have a UTI and that this was the cause of the cramping. I was offered Tylenol for the pain. The cramping became more intense as the day went on. My mom was timing them. They were getting closer together.
But still I was told it wasn't labour.

At supper time I was brought down to the case room just so I was close to the resident on call that night. Still, no one would say the words "You're in labour." I accepted the offer of morphine for the pain. I was hooked up to a fetal monitor to keep an eye on the babies. They were all doing ok. No one was in distress. The hours ticked by. I lost track of time. I was in and out of it. Breathing through the pain. Finally, the words that I had known since the time I woke up, were uttered. "You're in labour and were going to try and stop the contractions."

More meds were given to me. They didn't work. I was in full blown labour. They waited too long. I was given an epidural. Sweet relief. I slept in between contractions. I savoured the wetness of ice chips. And then I felt the pressure. I told the nurse who ran for the doctor. Billy/Billie was on the way and was breached. I was scared out of my mind. I knew what was happening. I knew how little they were. I knew what this meant and there wasn't one thing I could do to stop it. My babies were coming. I was going to try having them naturally but was prepared for a c section just in case.

Baby A - Billy (a boy!), was born at 2:49 am June 12, 2015. Weighing just 1 lb 3 ounces. He was held up for me to see and then rushed through the doors into the waiting hands of the NICU team. My water broke again and Baby Boy B - Zander, was born at 2:56am weighing 1 lb 9 ounces. I heard a tiny sound, a "mew", and then he too was whisked away.

Then nothing. No more urge to push. Baby Boy C didn't want to come out. Dr Pike, the ob on that night, attempted to guide him down but I protested in a very loud way. The pain was excruciating. I was given more epidural but even that didn't help. The pain of the doctor's arm inside my body was too much for me to bear. A third epidural was given and a stern talk from Dr. Pike, who told me that the baby needed to come out NOW. I took a deep breath, grasped the hands of my Mom and the anesthesiologist, nodded at the doctor, and breathed through the pain of my baby boy being pulled out.

Lyndon was born at 3:29am and weighed 1 lb 4 ounces. Once again my baby was rushed away. 

I lay there afterwards in shock. Boys.. 3 boys!
Where were they? 
Are they ok? 
When will I see them?
I had just given birth to three babies and I only got to catch a glimpse of them. I never got to hold them, not even a touch.
My heart ached. It wasn't supposed to be like this.

I was wrapped in a heating blanket. My teeth were chattering uncontrollably. My body was shaking. I was tired. Physically and emotionally. I was brought back to my room and I tried to sleep. 

A few hours later, a nurse came and asked us if we wanted to see Billy. My eyes filled with tears and my heart broke. Every parent's worst fear was about to happen. The first time I was to hold my baby boy would also be my last.

He was wrapped in plastic and was wearing a little green hat. He had wires all over his little body and a breathing tube down his throat. He was perfect. He was laid in my arms and I just wanted to stare at him and freeze his image in my memory. I wanted to remember every single detail of his sweet face. I told him how proud of him we were for being so strong and brave. For hanging on long enough for his brothers to grow strong. He was our hero. Our precious baby Billy. And then, though I could barely speak, I sang to him the song I sang every night while they were in my belly - 'You Are My Sunshine'. Because through all the dark moments of my pregnancy, those boys were the sunshine that got me through. 

The priest came and we had him baptized. As he was being blessed, Dr. Templeton came to me and said the words that broke my heart in a million pieces. "He's gone." Two little words that you are never prepared to hear. "He's gone." He had his little hand wrapped around my pinkie. I didn't want to let him go. I gave him a final kiss and passed him back. And then I was wheeled away.

My heart aches for Billy every day. I wonder what he would be like. What kind of personality he would have. What he would look like, although knowing that he and Lyndon were identical twins helps answer this question. I love him and miss him but I am very grateful to have met him while he was alive and that he was lovingly tucked in my arms when he took his last breath. Billy earned his wings and he gracefully flew home to be with the Angels. He is with us always, and I know he is still guiding and protecting his brothers as they continue their ride on this roller coaster we call life. 

Now and forever, Billy, you are my sunshine.


Adina, my heart breaks for your loss. You have walked a road that most hope never to go down. Words are failing me right now, so I'll simply say thank you for sharing your story. You are one strong mama, and I have so much respect and love for you and your beautiful boys.

I know it's hard to believe it, but sometimes the greatest gift the world can give you is the life you didn't expect. Zander and Lyndon just recently celebrated their first birthday, and we look forward to hearing all about how they are doing! (Another blog post to follow).

Monday, June 27, 2016

Welcome to Holland (Nurseries)

This weekend involved a bit of trial and error for us. Ok, a lot of trial, and a lot of error. It was the first long weekend of the Summer, and the weather was beautiful, with temperatures in the 20's and the sunshine streaming down. It's the type of weather where us Newfoundlanders get sunburned quickly, because we are just so excited to see the sun, we spend all day out in it without the required SPF.

With such a short window of Summer weather, we feel obligated to enjoy outdoor adventures as much as possible, and we had big plans for this weekend. On Saturday, however, Andrew woke up with a cold, so Brennen and I headed out to Bannerman Park to take some pictures. It was beautiful and sunny and warm, but he wasn't really feeling it, so we made it a quick trip. Saturday afternoon, Andrew was feeling a little better, so we decided to drive up Signal Hill and walk the trails around the Geo Centre. Again, it was beautiful up there and there were loads of families out enjoying the sunshine, but Brennen didn't like the wind, so we headed home.

On Sunday we planned to take Brennen out to Petty Harbour - a picturesque little town on the Avalon Peninsula. We have been out there many times before, and we just love to walk around and take in the views, and the salt sea air. We packed up our things (snacks, drinks, sunscreen..) and drove out around the bay. As soon as we arrived in Petty Harbour, we noticed that it didn't seem to be as warm as it was when we left St. John's, and it was pretty windy. Brennen wanted no part if it. We did manage to have lunch at the Water Shed Coffee Shop out there, which was really lovely, but then we knew it was time to get Brennen home.

It is frustrating, I have to admit. There are so many things that we would love to be able to do together as a family, and we see so many families and young children out enjoying the parks and all of the attractions that the city has to offer, now that the kids are on Summer holidays, but it's just not always that easy for us. Brennen doesn't like the wind. Or the cold. Or if it's too sunny. Or too loud. Or too busy. Or too anything. I know that we just need to stop putting too much pressure on ourselves, and to just go with the flow. Brennen dictates our schedule and our plans, so if he is done, we are done. That's it. We will keep trying, and we will have some great days, but not all of our outings are successful.

Monday (today) was a holiday for Discovery Day, and we had planned to give Brennen a break. He was going to hang out with Nanny and Poppy for the day while Andrew and I went for a hike on the East Coast Trail, but we woke up this morning to pouring rain. Honestly. It was warm, but calling for showers all afternoon, so we changed our plans. We thought, where could we take Brennen to enjoy a couple of hours where it is out of the rain, and the wind, and is temperature-controlled?!

We went to Holland Nurseries! It was like a bloody sauna in the greenhouses, but there was no wind or rain, and the flowers were out in full bloom and it was beautiful. Brennen didn't even hate it!

These beautiful blooms were a welcome pick-me-up, and the skies even cleared while we were there, allowing us to get outside and enjoy the fresh air. See? It's not all bad. We will carry on, making plans, making changes, going with the flow, without too many expectations, and without so much pressure for everything to be perfect. It is difficult sometimes, and in the challenging moments it can be hard to remember that everything is usually fine.. and manageable.. and pretty darn perfect.

Saturday, June 18, 2016

Stroll and Roll 2016

Today, we strolled and we rolled for Easter Seals! This was the 5th annual Stroll and Roll, and our family has participated every year! (I wrote about previous years HERE and HERE.)

The Stroll and Roll was developed as a fundraiser for Easter Seals, and also as a way to bring together a community of families, parents, caregivers and volunteers, all united by a common goal - to love and support children and youth with disabilities.

It is a wonderful feeling to be surrounded by people who "get it". Moms and Dads, siblings, grandparents, teachers (Brennen's awesome teacher came today!!) and friends, offering support and encouragement because they love our children. It is hard not to. These kids are amazing, and I am so grateful to be blessed with such a wonderful support system who allow us to live this life in the best way we can.

I am thankful to everyone who sponsored Brennen this year. Really. Thank you!! All money raised goes directly into Easter Seals programs and services for persons with disabilities, and those programs are life-changing. We know from experience. Brennen has been involved with Easter Seals since he was very young, and I can't say enough about the quality of the programs and the opportunities that are made available to our children.

Here are some photos from today!

Thank you again to everyone who sponsored Brennen, and for all of your support over the years. Life is a journey, and we have come a long way in learning about challenges, acceptance, and most of all, love. Thank you for being part of our journey. For listening and contributing and caring.

If you would still like to donate to Easter Seals, you can do so HERE.

Sunday, June 12, 2016

Miracles Can Happen

We love to watch the Janeway Telethon as a family. We watch to see the familiar faces of people we know - the doctors and nurses, surgeons and therapists. And we watch to see the touching stories of hope and healing, and the introductions to the Janeway "Miracle Kids".

Ava Mooney was one of this year's Janeway Miracle Kids. A while back, I shared Ava's story HERE.

Ava was born with Arthrogryposis Multiplex Congenita, a condition in which the joints become permanently fixed in a bent or straightened position. For Ava, this condition is quite severe. The joints of her arms, hands, elbows, wrists, legs, knees and ankles are some of the areas that have been affected, allowing her very limited mobility.

When we first met Ava, we didn't know anyone else with her condition, so we really didn't know what to expect from her, but it became clear very early on that she was a very determined little girl. She found ways to get around, and to do the things that she wanted to do. After months and months of working with Ava, and supporting her through surgeries and therapies, she took her first independent steps with Andrew and I. We were completely amazed and so excited for her! I was happy to have captured some of her first steps on video, as you can really see how happy she is, and how proud we all are!

Here is Ava's miracle story:

Working with children with special needs is both challenging and rewarding, and it is a learning experience for us each and every day. It is a tremendously rewarding role that we have as educators and child care providers, and we don’t take that for granted. We have had the incredible opportunity to witness some really special moments with our children, and we are honoured to be a part of their success stories.

We have an amazing little group of children here at Little Tulips, and we are thankful for the opportunity to work with each and every one of them!

It is exciting to think of what the future might hold for Ava. There is nothing stopping her now!

Tuesday, June 7, 2016

Our City's Most Accessible Hotel

This past weekend, Andrew and Brennen and I had the wonderful opportunity to stay in our city's newest and most modern hotel - The Holiday Inn Express & Suites.

The Holiday Inn Express is a uniquely accessible hotel, and is the Children's Wish NL Chapter's hotel of choice for Wish families, as they go to and from their Wish destinations!

Located directly at the St. John's International Airport, the hotel is easily accessible from the Trans Canada Highway, and is just minutes from Stavanger Drive, or just a short drive away from vibrant downtown St. John's. The convenient location is perfect for anyone with an early morning flight, or a stop-over in the city.

I am always excited to learn about the great things that are happening with accessibility in our community, and I was super excited to take this opportunity to learn about the accessible features of this beautiful new hotel!

Andrew and Brennen and I packed our bags and checked in for the night. We had so much fun, pretending to be tourists in our own city!

This particular Holiday Inn is a global icon with local flair. The hotel lobby is full of local artwork that was custom made for the space.

Our accessible room had a king size bed, and a washroom with a wheel-in shower. Our room connected to another room that also had a king size bed, so it was essentially a two bedroom suite with two washrooms. We had tons of space! I honestly feel like we could have moved into that suite and stayed for a long time!

After settling in to our room, we just chilled and hung out for an hour or so before hitting the pool. The indoor heated pool has an automated wheelchair lift. We all got in for a little swim before dinner!

The hotel also has an on-site health club with state of the art equipment.

As the hotel is brand new, they do not yet have an on-site restaurant, but they are in the planning stages to build a restaurant in the parking lot. They do offer a complimentary hot breakfast buffet each morning, and they have delivery options set up with a number of local restaurants as well.

We ordered dinner entrées from Boston Pizza... so good!

I just love this family of mine. A friend of ours told us recently that we can make an adventure out of anything, and that is the truth! It can be daunting at times. Just the thought of packing up your family when you have a child with special needs, and staying in an unfamiliar place, gives me all kinds of anxiety, but we know now that the Holiday Inn Express is fully accessible and able to meet all of our unique needs.

The owners of the Holiday Inn Express & Suites have gone above and beyond the minimum requirements to ensure that their hotel is fully accessible for all of its guests. Not only is it "wheelchair friendly", but they have incorporated many special features to meet the needs of people with disabilities other than just mobility limitations.

We were pleased to see a good number of accessible parking spaces with priority location in the parking lot, and step-free access to the main entrance of the building.

The hotel has six accessible rooms, two of which have wheel-in showers with wall-mounted shower seats, and grab bars in the washrooms. The bathroom in our room had a sink that you can wheel under (see photo of Brennen above!), and a beautiful sliding door with a large handle to accommodate people of varying heights.

Our room had plenty of space to maneuver Brennen's wheelchair, with lots of extra space on either side of the bed. There were mid-height light switches and power outlets, and a visual door knock indicator in both the main room and the bathroom. A doorbell outside of the room made a sound and flashed inside, to accommodate both hearing and visually impaired individuals.

Each person with a disability will have unique needs, but any building or room that is accessible to persons with disabilities will be accessible to ALL users. Providing full and equal access is essential when trying to make an inclusive society a reality, and The Holiday Inn Express has considered the needs of most everyone in seeking to create a hotel that is usable by the greatest number of people, regardless of ability.

Our overnight stay exceeded our expectations. The friendly staff were super helpful, and we couldn't have asked for better treatment. We are so grateful for this fun opportunity to stay in this beautiful new hotel. Thank you to Holiday Inn for hosting our family. We had such a great time!