Archive | January, 2012

Goodbye January!

31 Jan

Once again I have been plagued with writer’s block, it’s not that I couldn’t decide on what to share it’s that I had too much going through my mind that I couldn’t put it down to a post.

January was a very busy month for us, and with each event came a different array of emotions.

Lauren’s birthday party was a success and I felt blessed and happy to be able to share it with her and with our family and friends, it was a wonderful Sunday afternoon. I made Lauren’s Birthday cake from scratch, something I dreamed of doing for her since I was pregnant.

The Monday after Lauren’s Birthday was a difficult day for me, I had been riding the holiday train which then seamlessly ran into Lauren’s birthday. Once the train was stopped, I felt lost. All my distractions were gone, and I was faced with reality again. We had a scheduled surgery for Lauren coming up to have her G-Tube put in (replacing her Nose Tube) and her fundoplication (this surgery helps to prevent her from aspirating on liquids that might reflux). I knew that the surgery was very straight forward and that she would be more comfortable once healed but it didn’t take away from the fact that I was allowing someone to cut a hole into my baby. She had a perfect belly and I didn’t want anyone to touch it.

Friday the 13th arrived and off we went to the Montreal Children’s for Lauren’s surgery, I must have kissed her belly a thousand times the night before and then another thousand times in the morning before she went into the hospital. She was so sweet and vulnerable looking in her hospital gown that I had to choke back tears, tears that later sprang when the surgery intern took her behind the frosted glass doors to the Operating area. Three hours or so later we were able to go see our princess, everything had gone well and she would just be in recovery for the next few days. What a relief!

Our hospital stay extended to a week instead of the initial three days, they wanted to run extra tests on Lauren. Her breathing overnight was irregular and her oxygen blood levels seem to dip in short clusters, at the same time she was extra irritable after her surgery. I think that we ran every test on Lauren, an EEG to check for seizures, blood sugar tests, blood gas tests, urine tests, then finally two sleep studies. At the end she cleared every test with flying colours, and although the sleep study did show that she held her breath for short periods overnight it was nothing that we should worry about.

Most people would probably feel stressed or annoyed at the longer stay in the hospital, lets face it having people coming in and out at all hours and sleeping on a pull out chair from the early 90’s does not have mass appeal. For myself, I found the experience calming, yes I said calming. I was in the right place if I had any questions and I didn’t have that sense of loneliness that can often creeps up when I’m home alone. At points I found myself correcting or teaching different doctors and nurses about Lauren’s medications and condition, and although it was frustrating at some points, it was also empowering.

As our week at the hospital wound down I felt confident and ready to go home. All the conversations with different doctors, whether it be explaining Lauren’s disorder or correcting them on which medications she needed made me better about my own abilities to care for her. Additionally, she was all healed up from her surgery and being in the hospital gave me the chance to get used to her new G tube, something that had initially made me feel uneasy.

The month ended with a visit with a Genetic Counsellor, this visit was made to help us understand how the disease is passed on, the probability of it occurring again and the options that were available to us to help when we planned to have more children in the future. The visit was okay, I have to admit that I had already done tons of research on this so a lot of it was mainly a review of things that Stephen and I had already known. It did help answer some questions, but to be honest the whole thing is depressing. It makes me so sad that Stephen and I just can’t have a baby like most people, maybe it’s selfish but it was so exciting and fun the first time. The next round is sure to have its own fun times, but it’s not going to be an easy process. I do pray that we are given another chance some day!

Jenn Munro took this picture of Lauren in the beginning of January, notice Lauren's perfect belly 🙂 http://www.facebook.com/JennMunroPhotography

Lauren in her little hospital gown, almost ready to go into surgery

Lauren with Daddy, five minutes before they take her in for surgery

Recovering from surgery, the hat reminded me of when she was a newborn

Lauren a little swollen and tired

A little smile to let Mommy and Daddy that she is ok

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Happy Be-lated Birthday Lauren and Sumaiya! (January 8th)

10 Jan

Growing up I had the fortune of having a close neighbour and best friend named Sabrina. We grew up together and spent countless hours at each others homes. In elementary school whenever we hung out, you would be sure to find us together dancing and singing in our basements as we pretended to be on Star Search, or as characters on Jem and the Holograms (our favourite show). On certain occasions we even pretended to be rap stars – a genre of music that Sabrina introduced to me when we were nine years old. I think that there is a tape kicking around somewhere with an original Amanda/Sabrina rap, including back up vocals by Elina (Sabrina’s little sister).

The beginning of High School was a tough time for me, and Sabrina was my rock. I was bullied and at a time when someone could be your friend one day and not the next for the most trivial of things, I could always count on her to be there for me. She was more than a friend, she was a sister to me. Our friendship was never faked, it was easy and comfortable.

Years later we attended each others weddings, it was amazing – we had really grown up!

The next step – Kids! Sabrina had a very handsome baby boy a couple of years before our girls. I had always joked about having a baby at the same time as her, but wasn’t quite ready when she announced her first pregnancy. At the time, I made some comment to the effect that I would catch her on the next round.

Well as luck would have it (or weird perfect timing) we both ended up pregnant with our beautiful girls at the same time, and with the exact same due date! We followed each others pregnancies through Facebook, continuously checking in on each other. I even remember messaging her the day before Lauren was born to see if she felt like the baby could be coming that night.

As I arrived to the hospital in labour around 2:30am on January 8th, I remember doing a quick scan to see if I could spot Sabrina anywhere but didn’t see her. I remember brushing it off and giggling with Steve about how funny it would be if we actually did end up having our babies at the same time. Moments later, the movie like moment came to fruition and in arrived Sabrina and her husband ready to have their little girl!

They say that only three percent of babies are actually born on their due date, as it turned out Lauren and Sumaiya were part of this three percent, amazing considering that Sabrina and I are not known for our being on time. 🙂

Having Lauren was a dream come true, she was beautiful perfect and healthy. There was nothing in the world that could make that moment more special, well except for knowing that my best friend had her baby girl the very same day!

Oh how that joy has become bittersweet, as a parent you cant help but picture your child’s future unfolding in your mind. I pictured our girls as friends, they would share secrets and play their own games together. They would always have a story that would tie them to each other, a special connection.

Lauren doesn’t live for the future anymore, she lives for the moment. I’m sure that some of these moments will still be shared with Sumaiya, but it is hard knowing that they weren’t meant to shared in the same way that Sabrina and I had together.

Nevertheless we celebrate, we celebrate the life that we have been blessed with. Both Sumaiya and Lauren are such special gifts from God and I am so thankful for every single moment of their lives.

Happy Birthday Baby Girls! We love you both so very much!

Lauren and Sumaiya holding hands (3 Months old)

Play Date Smiles

August 2011 - Lauren and Sumaiya are 7 Months old

Lauren enjoying some of her Birthday Cake

Lauren taking a nap - all partied out!

Lauren's Birthday Cake

Birthday Rose Cupcakes

Happy New Year!

6 Jan

and a be-lated Merry Christmas and Happy Holidays 🙂 We wish you and your family all the best for the upcoming year, may 2012 bring you much love, happiness and success.

The majority of 2011 was full of pure joy and excitement for us – we welcomed our newborn baby girl, we moved into our *forever* home, we bought a Lexus (ha ha), and Steve’s sister came to live with us for the summer. Lauren was learning new things every day, impressing us with new smiles, actions and even words. Priceless moments.

Towards the end of October, we found out that something was wrong with our smart little girl, and by December we learned that she had Krabbe disease. Krabbe disease – a disgustingly unfair disease that kills our children, stealing one motor control after another. Our lives changed we spent the rest of the year learning to be a stronger family than ever, while appreciating every moment with our daughter.

With the close of 2011 behind us I started to think about what my resolution for 2012 should be. It seemed silly to think about at first but with reflection it made me realize that I wanted to come up with a resolution that would help set the tone for the upcoming year.

2011 ended on a tough note and 2012 wont be any easier – But one thing I know for sure is that 2012 will be filled with a lot of love. We love our little Lauren, and we love living every moment that we have with her. This disease has broken my heart and the pain I feel knowing that Lauren will only be in our lives for a short time is immense.

In my experience, I find that the knowledge of a shortened life not only helps one appreciate the small moments, but it can also add a lot of pressure. I often find myself judging my actions, questioning if I am parenting Lauren properly. Am I giving her the best experience that I can? Should I be doing things differently? I’m mommy, I’m suppose to be able to kiss the boo boo’s better, but I can’t. I think that I’m starting to realize that I can’t punish myself for not being able to protect Lauren from this disease.

So my resolution is a two parter – One – Love, Love my daughter and my family. Two – Forgive myself for something that has been out of my control from the start and stop second guessing my actions. Put those two together and I’ve come up with a vague mission to Love the best that I can and accept that I have done my best.

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On January 2nd Jenn Munro took some breathtaking photo’s of Lauren and wrote a beautifully heartfelt blog post about the experience. Please check it out when you have a moment

http://jennmunrophotography.blogspot.com/2012/01/lauren.html

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Pictures below courtesy of my wonderful sister in law Marlena, Thanks Marlena!

A Christmas kiss for Lauren from Mommy

New Christmas Shirt from Nonna! Doesn't Daddy look Happy 🙂

Mommy and Daddy out for a winter stroll