30.12.13

DANGLE THE MED-FREE CARROT

At Lauren's last gastro appointment, the doctor dangled the idea that it was unlikely that Lauren really needed her domperidone. He stated that it only works in 10-20% of people anyway so it was unlikely that it was really helping her. She has been on it for over a year now and she takes it 3 times a day so getting her off of it would be lovely. He suggested that we wean her over a few days and then see what it was like without it. If there were any effects, they would happen quickly since it is a fast acting drug.

The other night at 1am, with Lauren still up and having tummy issues that made her feel like she needed to eat constantly to help what she was feeling, we decided that she is in fact part of that 10-20%. She was first put on the medication because she would vomit and there would be food coming up that she had eaten over 5 hours before. Her stomach and intestines just don't do a very good job of moving food along and the domperidone, as much as we would love for her to be med free, seem to help things move properly and for her to be able to regulate her feelings of fullness and discomfort. I'm sure that one day she will be able to be free from her meds, but that day certainly isn't here just yet. When I was pregnant with Lauren, I swore that I would try to do everything I could to keep her from taking any medication that she doesn't need to so sometimes it is hard to see her on so many meds, but at least we know that they are medications that she needs. And in the end, if it helps to make her life better, I will continue to fill those syringes every night for as long as she needs it. It also makes my life better because it means that we all get the sleep that we so badly need.


28.12.13

LONG OVERDUE CHRISTMAS POST

I enjoyed Christmas by putting away my computer and it was glorious. Matt has been home all week and we've been able to spend so much time with Lauren. She's been in pretty good form lately so she's been lots of fun to be around.

Christmas for us was spread over four nights as we went around visiting with different family members. Lauren loves an audience so this was like heaven for her.

So now here's a ridiculous number of Christmas photos. I'm sorry.


Lauren is one of the few kids that I know who actually loves getting clothes. She holds every new item up to her chest and walks around with a big grin. However, she also does this with facecloths and dish towels, so maybe she just likes holding material up to her chest. Of course, Elysha went and got her a new Tinkerbell tshirt which is getting layered over all of the cute things that I actually want Lauren to wear. Argh!



I had gotten Lauren to practice opening gifts before Christmas so by Christmas she was ready to go! Bags or wrapping, she knew what to do with all of it.

For Christmas morning, Lauren got to try cinnamon buns for the first time. They were a bit hit... and so was the sugar high that happened afterwards.




 Matt and I also got time to celebrate Christmas at home with Lauren. She got to open her stocking, do some pilates (as you can see in the picture below) and play with her new dinosaurs. She has spent the last few days roaring as her dinosaurs make their way through the house. That's my daughter. Her two favourite things are Tinkerbell and dinosaurs. An obvious combination.



It was such a blessing to spend Christmas with Lauren and see her as a regular kid. Next year we will get to celebrate with two regular kids. Just the thought of it makes me want to take a nap.

18.12.13

YES, MY CHILD DRESSES HERSELF


When Lauren was first born, she was so chill. The doctors described her as "content" and she really was. However, now that isn't a word that people would use to describe her. It isn't that she isn't content now - she is still happy and curious and loves all of the people who love her - but she is too full of energy to be considered content. I swear, this kid doesn't stop. When I found out I was having a girl, I pictured a mini-me.  As a kid, I was quiet, easily entertained and almost never naughty (and I'm not making this up, you can ask my mom). I was like this because I was so painfully shy that I preferred to blend into the background and watch others. Well, my daughter is one of those kids that I would have been watching. Lauren doesn't walk, she runs. She has opinions about everything, knowing exactly what she doesn't like and taking such joy in the things that she enjoys that a packed elevator of adults all end up with smiles on their faces as they watch her revel in the way the elevator moves and stops while dancing with a beaming smile. As a kid, I might have had a person comment on how well behaved I was, but my daughter breaks down people's barriers with her free, life-loving spirit. 



Sometimes I find it hard to let her be the little girl that God has created her to be. I want her to sit quietly with me while she wants to go sit with any other kids in the room and try to play with them. I try to get her to walk and hold my hand, but she is too busy running to the next person she can say hello to or to point to any and every bird that she sees and yell, "Wooooowwww!" I try to get her to wear cute little outfits that match properly and all she wants to wear are her Tinkerbell  fairy tops, any shirts with cats on them or her Toronto Maple Leafs shirts. I get told a stern, "No" in the morning whenever I try to pull out anything that does not meet her strict clothing criteria. (And, Nicole, I would like to point out that I have you to blame for 75% of her clothing choices... and Matt for the other 25%. Thank you both.)


In the end I realize that Lauren and I are very different people and we probably always will be. I have taken a different approach to parenting than I expected. I'm try not to make decisions about Lauren by my own reflexes for what I would do because I didn't manage to break out of my shyness until my mid-20s and that is not something that I want for her, but by saying no to behaviours that might get her in trouble, hurt or sick. If she wants to go around charming everyone with an elevator dance, so be it, but, no, I will not let her continue to eat the bread that fell out of her hand and onto the floor during a particularly free part of the dance. She can run through the grocery store saying hi to everyone and I will encourage her for her friendly behaviour but I will also teach her that she always needs to stay safe. And she can pick out her own clothes but sometimes I will still pin her to the ground and wrestle her into the clothes that I want her to wear... and then she can pick the shoes which lately have been either her gold sparkly shoes or rain boots. Both of which she has also worn out of the house with pjs. It will be hard to let her be her own person and to know where to draw the line but I don't want to stifle her spirit. After all, it is that spirit and strong will that helped her fight when all we had was a prayer. Now I just need to keep her corralled as I see where that spirit will take her.  


14.12.13

POOR SANTA

And here is this year's mall Santa photo. There were three little ones this year because Harrison's mom had another little baby this year. Next year, we'll have to find a way to fit four kids in there with Santa!

It was the same amazing Santa as last year... though after this one, he may decide to hang up the hat. Look at the poor man's face. There is no way that he gets enough milk and cookies to make this worth it.

And we just laughed and laughed.

I'm sorry, Lauren.

However, as soon as the photo was done, Lauren was happy as a clam.
We all went to get the free ice cream that came with the experience and, since she almost never gets ice cream, maybe she will like Santa a bit more next year. But probably not.



9.12.13

SO, THE VERDICT IS IN... SHE STILL DOESN'T LOVE SANTA

We went to the Children's Heart Network Breakfast with Santa on Saturday morning and it was a bit of a gong show for Lauren from the get go. She is starting to be more vocal about what she wants in the form of crying, becoming human spaghetti and just plain losing her mind (the terrible twos are hitting a few months early. Ugh).

For Lauren, the highlights of the day were getting to ride the escalator, wandering through the ballroom and sitting in other people's chairs and eating mini Oreos. Her lowlights were all of the typical breakfast with Santa things: the fancy dress, the breakfast... and Santa.











She only kind of liked Santa at the end when he gave her chocolate (though, come to think of it, I don't think she got any of it, did she, Matt? Hmm, I wonder where it went). It was an exhausting morning of chasing Lauren around, but overall she had fun (I think).

It was also interesting to chat with some of the other moms there. There is a sense that this breakfast with Santa is different than others because there is a common thread that links us together. While we all share the joy of our children and their present health, everyone slips so easily into talking about our children's conditions that it made me very aware of just how much that is a part of my life. We act like normal moms and dads, but we carry the weight of the fragility of our children and the knowledge of what it is like to fear for their life like a cloak.

When I talk about Lauren, I have a way of sounding positive about what a miracle it was to be at the hospital when we were, that she didn't need a transplant but could keep her own heart and about how, even though she has a pacemaker, she can run circles around "regular" kids. Yet, even when I speak like that, I am always aware that I am holding back from recognizing the weight that I am wrapped in that is stitched together from fear, loss, grief and sorrow. Besides, no one wants to hear me constantly going on about stuff like that. It was so long ago and I should be over it by now. But unfortunately, I am not.

Right now I'm struggling. There are triggers in some of the strangest places that make that invisible cloak that I wear something that can seem too heavy to bear. I feel like I always need to be strong, like sharing this makes my faith appear weak or that I'm not over something that happened a year ago. But I'm just trying to be real.

Today, I spent much of the day crying. Lauren has a bit of a cold and I wasn't feeling awesome so I decided that we would watch A Muppet Christmas Carol this morning. It was fine until Tiny Tim came along with his sick little self. Yes, he was a muppet. Yes, I know it is a movie. But I also know the feeling of almost losing a child. I know Tiny Tim doesn't die in the end, but again, I know that story all too well from my own life with Lauren. Sometimes I get lost in my tears and the crying seems to go on forever. At times like that, it can help to hold Lauren close and, while I would rather that she didn't see me cry, she sits in my lap and wipes away my tears while giggling at the water that comes from my eyes. She will gently hold the sides of my face and it helps to feel her presence in my lap. I know that she is alive and well, but that doesn't stop the feelings from becoming overwhelming.

I hope this next baby is super boring. I don't think I can take any more excitement. I think that the baby hormones are helping to trigger all of this crying, but I also want to make sure that I don't slip back into depression, which I know can happen easily in times of stress or change. So I'm going to work on consciously fighting back against these feelings. That doesn't mean that I can't cry or I have to stop experiencing feelings, but it means that I need to work hard to live in the present and not allow triggers to have that power over me. I guess that I will be watching A Muppet Christmas Carol a bunch over the next few weeks. It's a good thing that as soon as it finished, Lauren started doing the sign for "more"! Yes, Lauren, you'll get to watch it much, much more.

In just a few days, it will be exactly a year since her final surgery. While I know that the date will bring up those fears and fragility that I hate to feel, I also know that it will be an important day in our family. What an exciting day that will be! I'm sure that on that day I will shed a few tears, but I think that most of them will be tears of thankfulness. Lauren can laugh with/at me as I cry for joy.

5.12.13

MERRY AND BRIGHT

I've been playing around with making some graphics. Here is a Christmas graphic that you can download to use this Christmas season. You can download it here with crop marks for an 8x10 to frame or here for a full 8.5x11 page.

Watch for more downloads to come! I've got lots of ideas percolating.

2.12.13

LET CHRISTMAS BEGIN

Two weekends ago, Matt and I decorated the house for Christmas. Normally our tree is full of glass balls and crystal ornaments but this year, with a handsy little Lauren around, we made sure that all of the ornaments could be manhandled without worry. I must say that I sort of miss my beautiful Christmas tree, but I love that, every morning, Lauren asks for the tree to be turned on and then does a nice long, "Wooooowwwwww!" She knows how to make the ornaments make music, light up, and exactly which ones jingle.


So now we're set up for Christmas and the season is going strong. This weekend Lauren meets Santa again. That was such a huge success last year, I can't wait to see how this year goes!

29.11.13

WHERE HAVE THE LAST 5 YEARS GONE?

Matt and I went to high school together for grades 11 and 12. In grade 12, we became close friends but over our university time, we drifted apart. I still heard news about him and he I, but we saw each other infrequently. Until the fortuitous day that he came to paint the basement in my house. We spent the day working side by side (with him nicely telling me, "I'm not going to say that you're doing it wrong, but..." and then just suggesting that he do it and I watch) and talking about everything. It was on that day that I knew that he was the same friend that I used to have, but with the improvements that the years apart had brought. We developed our friendship over the next month by spending almost every day together and, one evening, I told him that I knew that I was ready to commit to him, not just for the next few months, but for the rest of our lives. After two months of dating, we were looking for engagement rings and a year later, we started our life together in the house that brought us back together.

We spent years together, just the two of us, happy being a couple. We spent a hard year together trying to get pregnant while knowing that there was an underlying issue with me that might make it impossible. Then we spent a harder year together with Lauren and her fight for life. This past year has been a year of recovery and regrowth as a family and a couple.


There are moments in our life together that I think are pivotal, though at the time, I didn't realize that they could have changed the way that our lives played out.

The first is July 31, 2013, when we first took Lauren to the hospital. Matt had had such a long day at work that day and he walked in the door exhausted and overwhelmed. I could tell that he wanted nothing more than to lay down and take a nap, but as soon as I said to him that I thought Lauren needed to go to the hospital, he started packing stuff up for her and loading us all into the car. He didn't give a second thought to his own needs and never once questioned my feelings about her health and for that I am eternally grateful. I don't know if, in that moment, I would have been strong enough to make the decision to take her by myself. I know that even Matt thinks that because of me, Lauren's life was saved that day, but really, it is because of us together. I couldn't have done it without him, and, as he carried her sweet, exhausted little body out to the car, I saw the depth of his love and dedication to his family. I don't even want to think about what would have happened without his complete support that day.


Until Lauren went into the hospital, I never imagined that I might lose Matt until I saw him breaking during Lauren's first days when her heart was laying lifeless in her chest, worn and tired, while a machine kept her alive. And then I saw it. If Lauren didn't make it, Matt might not either. The pain of that would not be something that I could take from him and fix. His world would fall apart and would I still be a part of it? In our moment alone, I told him that I was afraid of losing Lauren, but also afraid of losing him at exactly the same time. At our most vulnerable time, speaking that aloud allowed us to join together in our fight for Lauren, as he took all of my fears away with a simple hug. This was the "for worse" that we had promised to work through when we made our marriage vows and he assured me that he wasn't going anywhere. And he didn't. My favourite memories of that horrible time are of the two of us walking outside for our evening lap of the hospital grounds, crunching leaves under our feet and talking openly about how Lauren was doing and our concerns and cares for each other. That was a hard year. Even after Lauren got out of the hospital, we still had a lot of healing to do together.

One year later, with a lot of work, prayer and patience, on our 5th anniversary, we are back to a time of "for better" and I can't imagine my life any other way.

Marrying Matt was one of the easiest decisions that I've ever made and, hands down, the best decision that I've ever made.


Matt,
There aren't words enough to explain the depth of what our first five years have been and how much I love you. Thank you for making my life so complete and joyful. I love every minute of our journey together.
With love always,
Amanda

26.11.13

FIRST BABY FREE NIGHT

I guess, technically, the nights that we stayed at the Easter Seals house while Lauren was in the ICU were our first baby free nights but, in my mind, those ones don't really count.

On Saturday, my mom and Elysha watched Lauren while Matt and I had 24 hours sans baby. What did we do? First he played Halo, while I read a book that I was dying to read. Then we ate and headed downtown for dinner, a lovely walk in the city and a night away in a hotel. It was so nice to spend time together and not have to worry about bath time routines.

Lauren had a blast at my mom's. They went swimming, played at the park and went for walks. I was worried that Lauren might not sleep through the night but she was so exhausted that she didn't even make a peep. Why doesn't she do that for me?

All that being said, both Matt and I were looking forward to picking her up on Sunday morning. He pointed out that much of our conversation was about Lauren but I swear we talked about other things as well. Oh well, even if we did, she is a big part of our lives so I guess we'll let it slide.




20.11.13

GET READY TO RUN

It's been awhile. For the past week and I half I haven't been feeling very well and with taking care of Lauren, working and making dinner, I've pretty much been tapped out. Most evenings, I haven't looked at my computer and since blog posts don't write themselves... nothing.

Because of the past week and a half, my doctor sent me yesterday to have an ultrasound to check on the baby. I wasn't worried because I haven't noticed anything out of the ordinary, but I think, after Lauren, he is being extra sensitive to my health and the health of the baby. So, I walked in with my ridiculously full bladder and got to see the little one yet again. The measurements all looked fine and the heartbeat was fluttering away and suddenly the little guy (I'm convinced that it is a boy) started wiggling around and waving his (her?) little arms around. The technician was surprised because it is unusual to see them wiggling around at this age, so either I'm lucky that I got to see it, or I'm growing another 100 mile a minute baby inside of me. Hopefully these two kids just go 100 miles a minute in the same directions (we all know that is just wishful thinking).




16.11.13

SHE'S A MIRACLE LIVE SALE

Lauren is enjoying a daddy-daughter day today, while I am all set up at Pacific Academy today with the only She's A Miracle sale of the Christmas season. If you have a minute, swing by and check it out. We have a new display, sale pricing and for every item purchased today, the same item will be donated to BC Children's Hospital.

11.11.13

I DID NOT TEACH HER THAT

We've been teaching Lauren her body parts lately. She's really gotten excited about finding her nose. So far she knows nose, ears, mouth, hair, belly, bellybutton, feet and hands. Not too shabby!

She had her monthly development check up on Friday and she's doing great. We have been encouraging her to try to speak more and she's also picking up new signs really quickly. With her signs and speaking, she can communicate around 30 words.

Her understanding is a whole different ball game. She is scoring months ahead on her comprehension of language. It is somewhat frightening when you tell her something that you think she totally won't understand and then suddenly she is doing exactly what you wanted (half scary because she understands and half scary because she's doing what we asked).

It is hard not to be constantly thinking about where your child is developmentally when she is being checked out so often. That's why I'm glad that we decided to wait a bit on speech therapy. And I have loved these last two months of just enjoying her being a kid without one appointment after another. Watching how she is coming along, you would never know that anything out of the ordinary happened to her last year.

Other than the scar. As you can see from the double nose jab photo above, the top of her scar is almost non-existent. The bottom half is still a bit obvious. It is the part that was cut open three times and had the large tubes for the bypass machine so it is a bit wider, still red and doesn't sit perfectly flat. Now that she listens a bit better, we've decided to give the scar strips another go, this time on the bottom half of her scar. So here we go, 1 week down, 11 more to go.

But I still think that scar is beautiful. It's why she is here.

PS - Lauren saw the picture of herself with her fingers up her nose, grinned and shoved them right back up there. She is trouble.

5.11.13

A BUTTERFLY HEARTBEAT

After everything that happened with Lauren, Matt and I were exhausted. All that we could think about was doing everything in our very limited power to try to get her healthy again. Before we had Lauren, we had plans about what our future family would look like. And then they all fell to the side.

At the one year anniversary visit to the ICU, one of Lauren's nurses asked me when I was going to have a second baby, but that idea brought up a strange brew of emotions, with the most prevalent feeling being guilt. How could I even think of having a second child when we had needed so much help with Lauren? How could I think of it when I had given birth to a baby with a heart defect that almost killed her? How could I expect anyone to be happy for us if that was to happen? I imagined that people would groan and say, "Here we go again."

Then Lauren had her heart check up in the summer. The one where we heard the beautiful and unexpected words "healthy" and "normal." It was in that moment that I realized that Lauren was just another little girl.

I asked her doctor what the likelihood of having another baby with her condition would be. He said that her condition is as likely as getting hit by lightening so having it happen twice was almost impossible. However, once you have one child with a heart defect, your chance of having another child with a heart defect doubles. But the good news is that your normal chance is only 1% so with any second child we would be looking at a 2% chance. That's a 98% chance of perfect heart health... still an A+.

I remember when I was pregnant with Lauren and we went for our early ultrasound. The doctor was over an hour late and, as much as I enjoyed sitting in a paper dress for over 60 minutes, I was so mad. But all of that disappeared when we first heard our baby's heartbeat. I looked over at Matt with tears in my eyes and say his eyes brimming as well. We were going to be parents.

After everything that we have gone through, I wouldn't change any of our journey. I know that Lauren has had a rough early go and it was hard on our family but now I know that we can make it through anything together and it made us stronger as a family.

Yesterday we heard the first heartbeats of our next step as a family. In an early ultrasound we saw the butterfly light heartbeat of Lauren's little brother or sister to be. And it was just as magical as seeing Lauren's heartbeat for the first time.

Of course, going into this one, I have worries that I didn't have with Lauren. I also feel like we are ready. As Matt and I got into the car to leave the appointment, photos of the new baby in hand, we both took special note of the song that was playing on the radio.

Don't worry about a thing,
'Cause every little thing gonna be all right.

While I might worry over the next seven months, even though I try my best not to, I also know that God has everything in His hands. We know that prayer works. We have seen it with Lauren. Now, when I pray with Lauren at night, I am so blessed to pray a prayer of thanksgiving for her health. I would ask you to join with us in prayer for this second child. My prayer is not that it would be a boy or a girl and not that it would have blue eyes or like peanut butter, but that it would be totally healthy with every cell in exactly the right place working in exactly the right way.

It's going to be an exciting year!


3.11.13

SNAPSHOTS

Lauren's been a busy girl this month. Here are some snapshots that have slipped through the cracks.

 High fives all around.

 A lady and her dad.

 Not so much of a lady.

 She loves her spaghetti.

 Break time.

 That's a dangerous sleeping position.

 She smells so good!

 Silly monkey.

 Duplo with her cousin.

She still loves her books. Current favourites are "A Home for a Bunny," "It's Pyjama Time" and "Barnyard Dance."

 Colouring with a captive audience.

 Renos = an audience.

 Kiss attack.

 Umm, yeah.

 Happy times.

Exploring nature.

Lauren brings delight to my life, smiles to my face and lots of laughs to my mouth (though, let's be honest, half the time I'm laughing at her, not with her).
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