Popping in to say hello

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Today the girls had their first post-NICU follow-up at Sunnybrook. It was mixed emotions going back, part of me felt happy to see people who were practically family for our stay in the hospital, and the other part anxious heading back to a place that holds so many memories and emotions.

After Ella’s head injury and the news that her movements could be effected, I practically jump for joy every time she moves. To me, she seems to be doing well, but after assessing her, our physiotherapist told us her movements are limited and she’s not maintaining eye contact. It cut through my heart, and I know deep down that we don’t do enough tummy time, but I really thought she was doing well. It’s scary to think that at only six weeks, she has limited movements, and even scarier that I didn’t notice. Does that make me a bad mum that I saw chubby cheeks and missed out on what else was happening with my baby girl?

Still, we walked out of the office and back through the halls of the NICU, past our old room, which now houses new babies, and said hello to some old friends, who were amazed at the girls’ sizes, and at our smiles. They told us many parents cry after their follow-up appointments, but to me, it feels like the NICU has had enough of my tears. Now, as a family, we have to be strong.

We stopped to say hello to Dr. Hui, who usually deals with much smaller babies,       but seemed quite at home with ours, and happy to show them off to fellow staff.

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Dr Hui and Ella, May 5, 2014

We’ll be back again soon for more appointments, and to show off our girls, who will forever be part of the Sunnybrook family.

Parents of Preemie Day

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Aside from May 4th being Star Wars day, it’s also Parent of Preemie Day. Now, it seems like every day is National day of something, but today hits home as a Mama of preemie girls.

It’s hard to believe that it’s been 117 days since our girls were born 11 weeks early. We’ve come so far, but the beginning of their lives will forever be like a scar on my heart, a reminder that whatever happens, we’ve survived much worse.

Of course, our preemies are the real stars; the fighters, who at two pounds were still feisty enough to pull out oxygen tubes and survive when they were given little chance. But, it’s the parents who will teach them to wear the preemie badge with honour. We start out as onlookers at the beginning, parents in name only, as since they no longer were in their mum’s tummy, nurses and doctors took over to ensure their safety and well-being. As preemie parents, we stand idly by as tubes are inserted, blood is drawn, medication given. We ask every day when we can hold our babies, and when we finally do, their small bodies placed against us, we finally feel like their parent, and then, too soon, they’re put back in their isolets, and we’re saying goodbye through a plastic window.

We pass other parents in the hall, see tears and sometimes smiles, we hear snippets of conversations, about surgeries, transfers, feedings. We nod to each other, knowing that the journeys we’re both on are terrifying, amazing, and wonderful all at once.

Even once we’re home, other preemie parents understand the anxiety and know how overwhelming the doctor’s appointments are, the exercises, the worry, and the exhaustion from months of being separated from the babies who should have gone everywhere with you, safe in your belly.

We will forever be parents of preemies. We will love, we will laugh, we will cry, we will teach, and we will learn. Our children will grow up knowing how strong they are, how they faced the impossible and how they can do anything they set their minds to. Eventually, the wounds will heal and our time in the NICU will seem so long ago, but we will always remember, and we will continue to be amazed by our preemies.

Sometimes, you just have to be a girl

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So today I was selfish. I’m almost never selfish, the kids always come first, but after five weeks of not sleeping, and a big birthday, today, I indulged.

I left the diaper bag at home, grabbed the Coach purse I always get compliments on, and went to do my nails and get my hair cut. I sat in the massage chair, at my favourite nail place and literally did nothing. Sure, I thought about the kids and wondered if my parents were overwhelmed, but there’s not much I can do when someone is holding scissors to my head.

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JMP and ACK at dinner

So after indulging, the husband and I went out to dinner and people watched without two year old tantrums or newborns screaming. The food was hot and the champagne cold. Of course my kids are my world, but let’s be frank; Mama was about to lose her shit.

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Pink nails and bubbles, a true indulgence

Arriving at my parents’ house, we found them sitting in the dark with two cranky girls. Immediately, I felt guilty, but Buds was sleeping and the girls (and grandparents) survived, and I already looked fabulous, so, pass the bubbly and the pacifiers and at least when I’m up all night, I’ll look damn good.

Doctor, doctor give me some news

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Ella at her first Sick Kids appointment, April 30th

After such a long journey in the NICU, it’s so nice to be home, but we constantly have doctor appointments.

Today, Miss Ella had her first follow-up appointment at Sick Kids’ neurosurgery department. After her brain damage and subsequent swelling, there was discussion about her having surgery or a shunt put in to drain excess fluid. Sick Kids were following us since the beginning, but we never were transferred because they thought we should wait and see.

I know she’s doing well. I KNOW it, but still felt anxious going. Every time the doctor did a test with her or asked a question, I worried she would not pass. I was almost in tears as the doctor told me they’re thrilled with her progress. We still need to keep going back for ultrasounds and check-ups, but the news is good.

It’s scary and intimidating navigating such a massive hospital where everywhere you look are families struggling, but Ella got lots of attention all tucked in her carseat.

We have about 1000 more doctor appointments, including more shots next week, but we’re on our way!

Enough is enough

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I have a confession to make; I used to like Jenny McCarthy. I found her sassy and sarcastic and actually laughed out loud when I read her book about pregnancy. Then, she turned the corner to crazy land and I lost any respect I had for her.

Yes, it is hard to have a child on the Autism Spectrum. Though I do not know the experience myself, I have worked with several children on the Spectrum, with varying levels of function.

The insistence of some high profile individuals, including Jenny McCarthy, that vaccinations are dangerous and directly cause Autism is not only dangerous, but has been proven to be scientifically inaccurate. The rise in Autism diagnoses more likely has to do with a better understanding of the disorder, a rise in the number of doctors willing to make referrals to appropriate sources, parents being more knowledgeable of resources and having a better understanding of Autism, as well as a rise in other diagnoses, for better or worse.

The number of cases recently of measles, mumps, and whooping cough should make individuals like Jenny McCarthy and Alicia Silverstone regret their so called advice and reverse their stance on immunizations.

I understand that as parents, we make decisions based on what we feel is best for our kids, but at what point does the safety of other children come into play? Our girls are preemies and are more susceptible to illness. I believe in vaccinations, and never questioned the hospital when they asked for permission to immunize the girls. In fact, I was shocked when the nurse told me that parents often don’t want their preemies vaccinated. With the odds already stacked against them, shouldn’t we be better protecting our kids?

When did the advice of doctors and other health care professionals get replaced by that of pseudo-celebrities more interested in pushing their own agenda than the safety of children?

Can we finally say that when it comes to immunizations, we’ve had enough of the advice and we are more interested in the health of all children beyond our own? Yes, for some a diagnosis of Autism can be heartbreaking, and many parents struggle to understand why, while others rejoice in finally having a name to a behaviour, finally gaining access to resources. The idea that parents may fruitlessly follow McCarthy’s advive hoping to cure their child’s Autism is heartbreaking, to say the least.

Enough is enough of the crazy theories, techniques, and advice. Parents should trust their gut, have a doctor they can talk to, and remember that we were all immunized, and no matter the path our kids end up on, it is our duty as parents to start them on the clearest, safest path so that they can hate us for it as teenagers.

Another year older, another year something something

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Nothing seems to come around faster than a birthday. It feels like you just finish the whole getting older spectacle when you’re expected to do it over again.

Yesterday, I turned 30. Yes, 30. I know, I am one of those mums you point out at the mall with a neverending parade of young children. Of course, it doesn’t help that I have a baby face making me look more like I should have a reality TV crew documenting my every move.

It’s hard to feel excited about a milestone birthday when you’re sleep deprived and sick. This year feels like it aged me five years instead of one, and I literally woke up on my birthday with more gray hair.

I guess at 30 there’s the whole “what have I done with my life?!” inevitability as 30 seems so far from 20, but 40 feels like it could come tomorrow. So, besides the obvious accomplishment of three super cute kids and a handsome fella of a roommate, my life has been interesting for sure.

I have both my Bachelor’s and Master’s degrees, in addition to an Addictions Worker Diploma. I have worked as a social worker going on 12 (!) years. I have lived in Toronto, Hamilton, Las Vegas, and Chicago, then back to Toronto again. I’ve been to Paris twice, England, Italy, Portugal, Spain, Germany, and Ireland in addition to other parts of North America. I have made amazing friends, and though I only have a small group of them, I love them dearly. I have loved and I have unloved. I have lost friends and family suddenly, and occasionally, violently. I have presented and written both for work and for pleasure. I have laughed and cried, and laughed some more.

Yes, I’m a Mama, but I’m also Alyssa, a woman with hopes and goals beyond the ones for my children (PhD anyone?). I intend to continue to lead an adventure-filled life, even if said adventure is taking all three kids out to eat on my own.

So, here’s to more gray hair (ick) followed by more hair dye, and to the adventures we’re sure to have.

We’re 100 days old!

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Raegan and Ella, day 100

Wow, so hard to believe that almost the first third of the girls’ first year is done! What an amazing adventure we’ve been on in just 100 days.

The past couple days have been super cold and gross so we’ve mostly been bumming around at home, which is fine. Buds’ last day at daycare is Monday so it’s about to get nutty in here!

Ella rolled over today! I put the girls on their bellies and she fully flipped herself to her back. I put her back on her tummy and she rolled from side to side but didn’t flip. I have a feeling this lady has some serious tricks up her sleeve.

Raegan continues to be a bit of a grump, but it’s mostly hilarious. She has some intense eyebrows, our girl.

This weekend is filled with activities and visits, not just from the Easter bunny. I hope the girls know how well loved they are already!

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Raegan and Ella, just hangin

How do you say thank you?

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I can’t imagine that upon seeing the two lines – pregnant!- anyone is hoping for a high risk pregnancy. The excitement and nervousness quickly turns to anxiety, fear, and the unknown. When we found out we were pregnant again, we never imagined the journey we were about to take.

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Ella, day 3

Dr. Hui discovered the twins, and it was a shock for us both, as she had rolled in the ultrasound machine on a whim. Then, Jas and I went in for our ultrasound wondering fraternal? identical? Identical! Two boys or two girls. Then, we’re told; mono mono. Google told me the basics, but also the horrors. That many mono mono pregnancies end in miscarriage, even late term ones. That there’s a risk one baby could kill the other. Everyone told me not to trust Google, but Dr. Hui confirmed our findings. And as I cried, and nodded along, she said, “I know, I’m sorry.”

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Raegan, day 3

Every week, I found myself back at Sunnybrook for weekly ultrasounds and doctor appointments. It seemed as though every week, and every ultrasound discovered something else wrong, one more thing to worry about. Dr. Hui was my constant throughout, answering all the random questions that would pop into my head on the bus ride over. We would have many follow-up appointments to check on the twins, and then, shortly after we found out we were having girls, Dr. Hui admitted me to High Risk Obstetrics. For three weeks, my belly grew, and my girls swam around. I had the steroid shots to boost their lung development if they were born at 24 weeks, and waddled through the halls every day. Dr. Hui always visited and checked on me. The nurses in HRO made me laugh and reassured me when things seemed strange. I told them stories about my son, and we talked about celebrity gossip. Seeing how desperate I was to be there for Christmas with Buds, Dr. Hui let me go, having me come in almost every day to be checked.

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Raegan and Ella, one month, February 7, 2014

I never thought we would have a problem. I thought for sure we would get to 32 weeks, and I would come back into the hospital for my scheduled c-section with my pillow and slippers in tow. The girls had other thoughts, as they continued to twist and turn inside me, they were making it harder for themselves to stay strong, and their heartbeats were all over the place. My nurse was calm, but seemed worried as she kept monitoring the girls. She stepped out, and during rounds, I was told I may deliver the babies that day, at only 29 weeks. I kept asking if Dr. Hui knew what was going on and what she was thinking. We trust Dr. Hui completely, and when she said we needed to deliver, we knew she would never steer us wrong. Dr. Hui came to see us before the section, and though we were disappointed she would not be performing the section, her presence was immensely comforting, despite the fear coursing through my veins.

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Ella and Raegan

Then, our girls were here and it was the happiest and scariest moment of my life. I couldn’t hold them, or even see them, as they were rushed out of the room and into the NICU. There, the team stabilized them, and provided for them when I couldn’t. I kept asking in HRO about my girls and begged to see them. Finally, I got to be wheeled downstairs, past the expectant parents awaiting ultrasounds, rubbing their bellies, and thinking “that will never be me, that will never be me” as Jason and my mom pushed me into the NICU.

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Hanging with my girls

There, the two smallest, most amazing sweet girls were waiting for me. That moment was filled with emotion that cannot be put into words. The nurses explained the machines and how the girls were doing. I was shaking as I put my arm in to touch my girls for the first time.

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Ella and Raegan, two months old, March 7, 2014

We were home, having dinner with Buds when I got a call from the hospital to come in because Ella was struggling. That moment was the scariest of my life, and I have never had such a long walk as I did going to see her in our NICU room. Thankfully, our girl recovered, though waiting to hold her was hard, as it went against all my natural instincts.

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Raegan and Ella having some time together shortly before heading home!

Thank you to Drs. Skidmore and Dunn who took such good care of Ella, and of me, as you explained with every ultrasound, with every head measurement, what was happening. Sometimes what you told me made me cry, but you allowed me to feel my anger, shock, and grief, without judgment, and though the future is uncertain, you gave her the best possible start, and there are no words to express my gratitude for everything you’ve done, and for what you do every day.

Finally home! March 28, 2014

Finally home! March 28, 2014

Thank you to the amazing nurses, nurse practitioners, breastfeeding resource nurses, parent coordinator, and staff who brought our girls into the world with love, support, and a sense of humour. You do incredible work, every day. Every day, you help make families whole, and every day you save lives. No one knows the depths of your work, how hard it must be to care for the sickest of babies, as well as to care for your own children. You take care of our most loved when we cannot. You help us hold our babies and teach us to care for them. You allow us to laugh and cry, and sometimes you do it with us. We say thank you, but you may never know truly how meaningful those words are, just as you may not know truly how special you are.

Meeting their big brother for the first time!

Meeting their big brother for the first time!

So, how do you say thank you for literally saving our babies, for taking care of them, for reuniting our family and making us whole again? Simply, you cannot, but I will continue to tell the world the amazing work you do, and ask that, when and if possible, they consider giving back to the future bables, who need a little more help, a little bit more time before coming home, and just a little bit more love.

http://sunnybrook.ca/foundation/

 

Raegan and Ella, three months, April 7, 2014

Raegan and Ella, three months, April 7, 2014

Out and About

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Ella and Raegan out and about!

I could not be more thankful that the sun is shining – finally! What a difference it makes being able to head outside with the girls.

Almost every day this week I’ve loaded up the stroller and gone for a walk. Usually, we just run errands (stamp buying time, yay!), but today we went out to lunch with our friend. First time in a restaurant, and the girls nailed it by sleeping through it.

I must admit, being at lunch and seeing a head peering into the stroller from the side of my eye was just a tad creepy, but none of the weirdos in our hood can keep us inside.

I honestly think that being in the sun, pushing the girls around is an instant mental health protector. It’s hard to feel tired, anxious, or crazy when you’ve got sunglasses on and the wind blowing in your hair. Also, weight watchers activity points.

Buds is done daycare soon, and I can’t wait for all the adventures we’ll have in the neighbourhood, even if it is total chaos getting out of the house.

We’re three months old!

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Raegan and Ella celebrate three months! April 7, 2014

Wow, three months and our first update at home!

The girls are three months actual age today, and 18 days corrected, so they’re acting like two newborns.

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First nap in her bed!

We’ve mostly spent our time at home getting to know each other, and you know, not sleeping. But we’ve had fun too. The girls have already been to the mall, and even got a little party at the Disney store! Yesterday, I loaded the stroller and girls up and we did some errands in the ‘hood and went for two long walks.

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Disney store party!

At their first doctor’s appointment after being sprung, the girls had gained weight, with Miss Ella weighing in at just under 8 pounds, and Raegan at 7 pounds, 6 ounces. I’m sure they’ve gained more weight since then, and I don’t really notice a size difference anymore.

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Someone did not want to nap. Shocking.

We’ve been doing lots of tummy time and other exercises our physio gave us. The girls also have big periods of wakefulness, and they enjoy rolling around on the floor together.

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Two tummies are better than one!

I have to admit that I haven’t quite figured everything out in terms of other responsibilities, but have showered every day and finally cleaned the bathroom today! (Yay!)

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Buds takes a peek

Braeden is doing well with the change, though it hasn’t been easy. He loves to help feed the girls and always gives them hugs, kisses, and high fives, which is how we roll in this fam jam!

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Buds helps Daddy feed Raegan