30.4.13

WILL SHE DIE OR WON'T SHE?

At Lauren's last appointment we got the great news about her ventricle having significantly improved, but we also got the bad news that there is definitely an issue coming up in her aorta. On Monday, Lauren is going in for her CT scan so that the doctors have a better idea of what is going on and when they will have to do something about it. It is a fine line between waiting long enough for her heart to grow as much as possible before operating and waiting too long so that it compromises her function. It feel kind of like gambling or trying to shoot a moving target (neither of which I do well at - I hate the uncertainty of gambling and refuse to do it and I can barely throw so I figure that I wouldn't be much more successful at shooting... forget trying to shoot something that is moving). 


I can't lie - I'm nervous about Lauren's CT scan. Not nervous for what it will show, because I'm glad that we will be getting more information, but nervous that she will die during it. There I said it. It sounds crazy saying it out loud but for some reason in my head it doesn't sound so far fetched. 

Last time, she had a CT scan she almost did die. I sat in the doorway, listening to the shrill scream of the monitors and watched people running to and from the room. Nurses were crying, we were crying, and just when they got Lauren back, the machines went off all over again. And it took so long each time. I know that they say that time slows down when you're in a situation like that, but even taking that into account, it took so long that it seemed like the screeching might not ever stop until it was too late. 

So, now she's going in again. And I'm scared. 

I wrote a list of facts that support my fear and facts that refute my fear in an attempt to a: calm myself down, b: give myself another thought instead of the scary one and c: give me something to blog about (kidding, kidding). Thankfully, my lists did not support my fears. Here are my lists...

Facts Supporting the Belief that Lauren Will Die
- remember what happened last time?! I do. Forever.

Facts that Support the Opposite
- she has been sedated since then and been fine.
- her heart stopped because her coronary artery was being pinched off.
- her coronary artery looks great now.
- we didn't know it but she needed another emergency surgery before she went in to the CT scan.
- Lauren's ventricular function is five times better than it was then.
- her pacemaker helps her every day now.
- it seems like everyone there knows her and her history and how to help her. 
- have you seen her? She's crazy and she looks like a new baby!

So I came to the conclusion that this is a regular procedure that will happen on Lauren who for all intents and purposes is a healthy little girl! A crazy, toddling, life loving, healthy little girl. 


Instead of asking for you to pray that Lauren survives, I would ask that you pray that the images are clear and that they give the doctors a plan for Lauren's future surgeries. I'm also praying that she doesn't experience any fear or discomfort and that everything goes smoothly and on schedule. 


29.4.13

OOOH THE FACES YOU MAKE

"No, Lauren."

Say "no" for any reason and you end up getting the oooh face. I realized that while I'm taking photos of Lauren, she also flashes me the oooh face. Enjoy.










28.4.13

THANK YOU, TAXPAYERS, FOR YOUR MONEY WELL SPENT

Matt and I sometimes shake our heads at the amount of money that has gone into saving the life of our baby. If we were in the States, we would have lost our home and had to declare bankruptcy. Thankfully, here in Canada, there were costs that we had to pay, and ongoing costs like Lauren's many meds, but they are nothing compared to what it could have been.

One of the things that we do know the exact cost for is the RSV shots that Lauren got throughout the winter. She got three sets of two shots, each shot cost a whopping $1500! There is a tight screening process for kids to qualify for the shots and usually babies with cardiac failure or cystic fibrosis end up qualifying. It sucked to have to get Lauren poked so many times but she stayed healthy all season long.

On Monday, Elysha and I took Lauren to visit the ICU and drop off Timbits. One of Lauren's primary nurses is moving away and we wanted to see her again before she left (I told Lauren that Princess Carrie - as we call her in our family - leaving means that she is not allowed to go back into the ICU since her other primary nurse/family hero has already left). It is always so exciting to take Lauren in to show the staff just how well she is doing since they cared for her so amazingly well for so long last year. While we were there, I was speaking to Dr. Jeff, an amazing fellow (that's a doctor level) who seems to always be there, and he said that all of the children who got the RSV shots managed to avoid having to come back to the ICU even though this was a particularly bad RSV season.

That information made me so glad that Lauren was able to get the shots. Though Lauren was safe this year, my dear friend in Switzerland ended up spending many nights in hospital with her son (my godson!) who, at only weeks old, caught RSV. It was scary for a few days but, praise the Lord, he was able to go home and continue to spend all of his time just being cute.

So, thank you taxpayers, for my daughter's life and the fact that she had a home to come back to after the hospital. And thank you for the money that continues to be spent on her. There is no amount that I wouldn't spend to have Lauren with us, but it is nice that we live in a place where we all pitch in to help those who need it.



26.4.13

FINDING A GLIMPSE OUTSIDE OF DEPRESSION

I know, I know, by 14 months I shouldn't still be holding Lauren until she falls asleep. Before she switched to one nap a day, the last thing I wanted to do was hold her as she fell asleep. It would take at least 30 minutes every time and, with putting her down for two naps and then finally to bed at night, that was an hour and a half of sitting there, sneaking peaks to see if she was sleeping without having her notice. And it started to take longer and longer. (Let me also say that, yes, I could put her down to cry it out but then I would be the one crying it out because she would puke and now I would have three things to do - laundry, bathe the baby and then put her down all over again - rather than just wait it out.) However, now with one nap, she falls asleep within minutes!

In the last few days, she has fallen asleep nice and quickly but I've stayed holding her for just a bit longer. Tonight, as I sat there with her, I reflected on our day. Lauren and I spent so much time together today laughing and playing. We went outside and she explored the garden, wiped dirt all over her face and carried around the biggest rocks that she could find in the dirt. In those moments, in the quiet of her room, while enjoying the weight of her resting against my chest, I realized that I delight in Lauren. I have always loved Lauren, more than I ever thought I would possibly be able to love, but delight has been elusive. The depression that engulfed me during Lauren's hospital fight let me feel love for Lauren and some happiness, but it was always fleeting and didn't stick. Delight, on the other hand, is a joy that I feel in every inch of my body and it sticks. I feel content when I'm living in a place of delight.


I marveled today at how long I sat watching Lauren putter around at the edge of the dirt, picking up rocks and babbling at the top of her lungs. Not for a minute was I bored or looking for the next thing that I could do. I was simply living in the moment and the emotion.


This feeling of delight has filled me up a few times over the last week. It makes me so hopeful that I'm starting to move out of my depression and into a healthier, happier place. I know that I still have a long way to go, but this is such an encouraging and promising first step.

So tonight, I delighted in holding Lauren. It amazes me that, even though she's growing, she is always the perfect size for my lap (oh gosh, I hope that doesn't mean my lap is growing as well). God didn't make a mistake when he gave her to me. Lauren is the perfect fit for me. My daughter is meant to be mine and I'm so glad that I can take delight in the little lady that she is turning in to. 


25.4.13

LET'S PLAY!

When Lauren was young, she would have "play dates" and just sit and flap her arms. She was so hesitant with everything that it was actually a little sad to watch. Well, times have changed. Lauren holds her own now. On Monday, she had a play date with her friend, Harrison, and the two flew through the house like a mighty baby tornado. If I thought one baby made a big mess, two is a whole new experience. But it was so worth it. I laughed so much and they had a ball together!

It's Lauren's new "Oooh" face. She does it any time she does something she shouldn't and gets caught. It is bad because it makes me laugh so hard and I can't keep a straight face to save my life.
I don't even know what to say about this one.

There was a whole collection of toys in the bathtub by the end of the play date (and Harrison's missing sock).
"oooh"
"What's in here?! Maybe it should go in the bathtub too!"

Project Ottoman Dump

This is the perfect time to brush my teeth. Obvi!
And they're off!

Mom, when can he come back over?

23.4.13

SOMETHING WE NEED TO DO MORE OFTEN...MINUS THE PARANOIA

Last night, Matt and I went on a date to see a hockey game. Even though it took everything in us to actually leave the house and get out of our my sweatpants, we did it. It was all going tickity-boo until I got a text message from my dad. Lauren had thrown up...a lot. I don't know why I didn't even consider that as a possibility before I left, but I didn't. It might be because it happens less frequently than it used to and we are so accustomed to grabbing the towels, mopping it up and dealing with it, that I don't really think about it anymore.

Until that text. For some reason it just threw me over the edge and my "What ifs" started flying. What if she passed out? What if they call me in a minute to tell me that they are in the ambulance on the way to the hospital? What if she doesn't get enough calories in? What if she isn't gaining any weight? What if her pacemaker stops working? What if she won't sleep? I was clinging to my phone like it was a lifeline and I couldn't stop checking it. I realized what I was doing (I mean really, is she really going to head to the hospital for something that you regularly deal with?) and instead of checking my phone, I needed to check myself. When the What-if Monster hits me at home, especially when it is that bad and spirals, I tend to talk myself through it...out loud. Well, in public, that looks especially strange. I did my best to say no to each of the what ifs and try to stop any new ones from popping into my head. It is so hard because they aren't helpful or asked for and they show up so suddenly. To get rid of them, I need to be able to fight them just as quickly.

When we got home, Lauren was snoozing away. My parents had enjoyed their one-on-one time with her and, other than the vomiting, there were no other hiccups in the night. All of my What-ifs were completely off-base. I should have been thinking, "What if this works and Matt and I can go out more often?!" This was the first time that anyone else has put Lauren to bed for the night and it was such a relief to realize that it could be done.


On one of those A&E shows about OCD or something, they use exposure therapy to help people face their fears. My What-ifs are all fears. They are fear of the unknown, of making the wrong decision or of not having control. That is actually funny because, since I'm not God, I shouldn't expect myself to be able to know everything, make all the right decisions or have control of anything (thank goodness because I'm pretty sure I would do a terrible job. I can't even get a simple to-do list completed!). So I've decided that, as difficult as it is to live in the What-ifs and deal with shutting them down, I should do some exposure therapy. Parents - get ready to babysit some more! I need to spend more time on dates with my husband to get used to being away from Lauren. It will be hard, but I'm willing to make that sacrifice if you are.

PS - We saw this while we were at the game. Seeing someone sitting there with an old yellowing novel was not what we expected. Must have been a good book!


20.4.13

A GIRL'S BEST FRIEND

























Lauren has a best friend. There is no other that will do. Her best friend makes her laugh, helps her walk and holds her hand. No, Austin isn't her best friend (he has been sent to a farm / my parents' house because they are not in the love portion of a love / hate relationship right now)... the vacuum is her best friend.

It is impossible to have the vacuum out without Lauren hanging on to it with her hair blowing in its breeze. She hears its roar and comes running (her fastest crawling). It helped her learn to walk because she would stand up to have it blow in her face and as I moved the vacuum through the house, she would cling to it and walk along. She plays with it even when it is just hanging around in the kitchen.



That all might sound like normal attraction, but we know it is true love because, when Lauren is downstairs with us, she often disappears behind the curtain covering the closet in the laundry room and visits her friend, Vacuum, in her home under the stairs. She laughs, lovingly hits Vacuum on the back and Vacuum doesn't complain even one bit.

I wonder which of our household appliances will be the object of Lauren's affections next. My money is on the dryer. The clothes move as if by magic and that light is so enticing.




17.4.13

MOO, BAA, LA LA LA

On Monday, I went with a good friend and her two boys to Maplewood Farm. It was a picture perfect day out, with just a slight chill in the air but the sunshine kept us nice and warm. I pulled out Lauren's little boots and after shoving her foot in and then realizing that it still had the tissue paper in it (points for awesome mom work there), we got them on and headed out.

Lauren was in love. She was in like with the animals, but in love with all of the things that she could pick up off the floor (rabbit poop included) and in love with all of the other people around (a potential audience). We spent all morning making our way around the farm and enjoying ourselves. It was such a blessing to watch Lauren explore and grow. Sometimes it makes me sad for the time that she's missed with being in the hospital and then on baby lock-down, but on the other hand, it just means that I have lots of fun things planned for this year!

Time for a ridiculous number of photos...
















16.4.13

ONE FOOT IN FRONT OF THE OTHER

Lauren has a favourite bedtime book about a Mommy and baby bear who go through life together and share all sorts of experiences. At one point, the poem reads, "Paw in paw, we will greet every morning. Paw in paw, we will meet every day." Every night, when I read that, I think about Lauren's ongoing medical issues and I realize that it will just be something that we have to work through together every day. As silly as it may seem, this little board book reminds me at the end of each long day that we can't deal with more than what we are handed each day and to just take it a moment at a time.

Today was a big appointment at the hospital. There was so much that we hoped to learn. Unfortunately, we do not have all of the answers that we hoped to have.

Lauren was mildly sedated with a drug that essential turned her into a baby drunk. I now know that when Lauren chooses to start drinking, she will be the type who loses all inhibition. Usually Lauren doesn't bite, or just bites lightly, but at one point I had to try to get hospital bed paper out of her mouth (obviously) and she chomped down so hard! The word "no" definitely wasn't computing.


Lauren's Echo was smooth enough. She spent the whole time watching Tinkerbell and holding on to the technician's finger. Every once in a while she would look at me, register that I was there and get a dopey smile on her face before Tinkerbell took her away again. 

We had to wait quite awhile to have her pacemaker information downloaded and the sedation started to wear off. Lauren's appointment took up her nap time so she was not a happy camper. She turned into a bit of a cranky baby drunk. The only thing that seemed to make her happy was her apple juice and her baby duck (which apparently she can jam right into her mouth and might have to be put away until it is no longer a choking hazard).



Since her last appointment, Lauren's pacemaker has gone off 205 times. I am so thankful that she has that in! It seems like a huge number but we are pushing more solid food on her and the pacemaker is still only being used less than one percent of the time. Still, I'm not going to lie, when I heard 205 I wanted to puke. 

I've written about our cardiologist, Dr. Escudero, before but here's a recap. She is lovely. She helped keep us calm when the worst was happening and she has a very gentle presence. At these appointments, she has a knack for keeping things low key. In the past we have usually heard, "There seems to be slight improvement." We have heard this so much that I nearly fell out of my seat today when she said that there was "a dramatic difference." She showed us Lauren's early echos and her echo from today and there is a huge difference between the amount that her ventricle was contracting in September (i.e. almost not at all) and the amount that it is contracting now (it looks like it is finally moving!). Dr. Duncan (the lead cardiologist) told us that her ventricular function has improved to almost that of a normal child, which is something that almost never happens! I literally picked Lauren up, held her over my head like a trophy and cheered. Now that I think back, I'm perhaps a little embarrassed but that is a huge positive! To come from your ventricle looking, for the most part, mostly full of dead cells, to a ventricle that is almost like a normal ventricle. Wow! There is still a ways to go, but we're getting there. 

Unfortunately, that great news had to be tempered with some not great news. There is an obvious kink in her aorta. It is unclear whether kink is something that runs all the way across the aorta or only part of the way, but either way, it is there. To correct that, Lauren will need another surgery. The question is, when? In the next month, Lauren will go for a CT scan to determine just what the kink looks like. After those images, there will be a better plan going forward. If it is not that bad, the surgery will wait until it either gets worse or she gets bigger. If it is bad, surgery will have to be sooner rather than later. So, now we wait again. We keep putting one foot in front of the other and continue to meet the challenges of every day.  

Thank you to so many people who prayed! Please keep praying. I'm still believing in miracles to come. After all, we got miraculous news today. And there is no such thing as too many miracles. 



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