30.11.12

LITTLE CREEP

Lauren has been spending more and more time on her belly lately. She seems determined to crawl. Unfortunately, right now she only moves backwards. She tries really hard and is focused on an item in front of her and she starts to move...the wrong direction. Austin enjoys this because it gives him time to ensure that he is just out of her reach, but Lauren is getting more and more frustrated. Today she was up on her hands and knees rocking back and forth so I know that it won't be much longer now. For now, I just keep finding her in situations like this.



29.11.12

HAPPY ANNIVERSARY, MY LOVE

In grade 10, Matt and I first met. We had no idea that we would one day end up married with a beautiful daughter. But God was weaving our lives together so that after becoming good friends, then losing touch, we would end up connecting again, dating for a few months and getting engaged. As my dad said at our wedding, I have always been quite indecisive, but this was one decision that I was sure of so he knew that it was right.

This year has been difficult for us. We were not expecting to have this be our first year with our much prayed for daughter. When we were afraid that she might die, I knew that it would break our hearts and I was afraid of losing Matt as well. Our time with Lauren has made us bare before each other with our joy, fear and prayers open in a new way. And I fell in love with Matt in a new way. His fragility was something I had never seen and my faith-filled hope was strength for both of us. Our relationship as we knew it has had to change with the stresses and struggles that we have faced and those we continue to deal with, but our relationship is also something deeper, more solid and a safe place for us to rest our joys and fears.


My love,
God started twining us together many, many years ago. We had no idea of His plan for our lives and we don't know His plan for tomorrow, but this journey with you is such a gift. I love you and I always will. You're stuck with me, you lucky duck.

27.11.12

A TEENAGER ALREADY

Every day I see that Lauren is going to be trouble. She is usually very well behaved but there are glances and little laughs that let me know that I'm going to have to stay on my toes with her.

This was her little tantrum today.

She was playing on the floor with the carpet, content as can be...


...she saw me there, looking at her, and started pretending to cry...



...but that wasn't enough, and she dramatically dropped her face to the floor. How could you be so heartless, Mom...

...and then when I didn't respond she rolled over, noticed that she had feet..


...and decided she was actually happy.


 Oh Lauren.

26.11.12

BACK TO CHURCH

After a long time away, last night we took Lauren back to church. The people at church were amazing about praying for Lauren so it was exciting to be able to bring her there again. 




When Lauren was in the hospital, Matt and I knew that she was in God's hands. There was nothing that we could do other than pray and send out requests for prayer from everyone that we knew. We took such comfort in knowing that only a few weeks before Lauren had her surgery, she had been dedicated to God in the church. So while we were scared, we knew that she already belonged to the Lord. Praise the Lord that he has given her back to us. 

This is what I got to enjoy today - a reminder of His constant love and provision.


24.11.12

EATING UPDATE

Two weeks ago we were really concerned about Lauren because it had been three weeks since she had gained any weight. As she was growing in length, she was looking skinnier and skinnier. It was hard to get weight on her because my milk was drying up (ongoing stress will do that to you) and she was refusing solid food.

Lauren's pediatrician diagnosed her with an oral aversion and I promptly went home and researched a bunch of stuff about oral aversions and how to deal with them. The basic gist of it is to help them focus on things other than the eating because if Lauren thinks about it, she gags and then bad things happen. We have had Tinkerbell flying past and encouraging Lauren with every bite, she has watched all sorts of YouTube videos, we have plugged her into Disney DVDs with Ariel making a personal appearance and when I'm feeling really guilty we watch Fantasia and I tell myself that at least she is listening to classical music with her cartoon viewing. I figure that as long as it's going down the hatch, we are all good.



And success! In the last two weeks, Lauren has gained just under an ounce a day. She now has purees or oatmeal four times a day and she is not having as many vagal episodes. Her doctor has said that we need to get as much fat as possible into her so she is on my dream diet... butter on everything! I have a container of butter near the microwave and I melt a little to mix into every one of her meals. She even eats pears with butter mixed in. Her little leg rolls seem to be evidence enough that this is working. Right now she is 15 pounds, 8 ounces. We will see what she weighs in at next week.


No, I don't put butter on her toes... though maybe I should. Those are in her mouth pretty frequently. 

23.11.12

SITTING DOWN IS FOR BABIES

In the last few days Lauren has discovered that her feet are not only good for sucking on but that she can also use them to stand. Now that is her favourite thing to do. 



When she is fussing, usually it is just because she wants to be propped up so that she can practice standing. As I'm actively working to move past the trauma of this past summer it is so helpful to see Lauren as she begins to move from the baby stage, when all the trauma happened, to the toddler phase, where so many new things are possible. I know that standing is just a regular baby thing and not really blog-worthy, but it helps me look towards her future, which is something that until now I have still struggled to do.

22.11.12

CHECK UP

Lauren has been to the hospital for different reasons four out of the last seven days. She has had a halter heart monitor put on, gone for an allergy test (no allergies!), been poked with an RSV shot, and had a heart appointment.



Yesterday's RSV shot went really well. This is not a regular shot but one that preemies, babies with cardiac issues and babies with cystic fibrosis can get. The shots are assigned on a points based system (and Lauren was one of the first ones called) because they cost a whopping $1500 each! Ridiculous! And she has to get four shots over the next 4 months. Thank you Canadian Health Care System. This protects her from a common cold that most kids get before the age of two. It doesn't provide her with immunity but with live antibodies that can begin to fight against the virus if it is introduced to her system. The shot might be expensive but the hospital stay that she could have if she caught RSV would definitely cost more.



Today Lauren went for another scheduled check up at the Cardiac Clinic. We were expecting improvement because yesterday when her pediatrician listened to her heart he told us that her gallop wasn't there like it used to be. There was still a murmur because the valve and ventricle have been stretched but we are still praying that over time and as she grows, her heart continues to remodel.

Lauren's cardiologist was happy because the vagal episodes, which had been a daily event, have been less frequent since cutting out one of her meds. We are so happy about that too because they are scary every time they happen!

There is a protein (BNP) that the ventricle of the heart secretes when the ventricle is stretched past normal. Right after Lauren's second surgery, the doctors did blood work on her and her BNP was over 1200. Normal is 38. This test is usually done on adults to measure heart failure so they weren't sure what the exact correlation would be in Lauren's case. After a week or so, her BNP was around 750. We were ecstatic! Last time in clinic, Lauren had her BNP tested it was around 550 but this time is was 200! Lower and lower. Once it is below 100 they are not even going to check for it anymore. 

Lauren's old ejection fraction was 25% (meaning that every time her ventricle contracts 25% of the blood is pumped out. Lower ejection fractions mean that more pumping has to be done to try to get enough blood out which is harder on the heart). There was improvement on this as well....

Old ejection fraction: 



New ejection fraction:


We're only halfway to a good ejection fraction so please keep those prayers coming! They are changing Lauren's life. Praise the Lord for every day that we have with her.





19.11.12

TEN THINGS I SAID I WOULD NEVER DO (AND I DO ALL OF THEM)

Like many expectant mothers, I had the best of intentions before Lauren was born. I had a long list of things that I would and would not do with her once she was born. I'm pretty sure I threw that list out long ago. Here are some of the rules that seem to get broken on a regular basis:

1. Feed Lauren store bought baby food while she watches Disney movies or children's music on YouTube. 
Rationale: If my goal is to get food into her, who cares how it happens? I'm really hoping we can move back to homemade soon but I'll do anything to try to stop her from gagging.

2. Take Lauren out on errands at night. 
Rationale: Hey, if she's going to be up anyways, why not be productive?


3. Let Lauren have lots and lots of toys.
Rationale: I swear they are having toy babies when we're not looking. That and it seems that any and all household objects are also slowly turning into toys.


4. Throw Lauren up in the air.
Rationale: I was nervous about this for two reasons. The first was that I didn't think she would like it. Wrong. She loves it. The second reason was that I am terrible at catching. However iIt appears that I am able to catch things if I feel they are important enough. Apparently nothing in PE was ever important enough - not even my pride.



5. Sleep in Lauren's room past 6 months.
Rationale: I can barely make it between the mattress on the floor in Lauren's room and the chair without falling over. As long as she is getting me up 3 to 8 times a night, I don't think it is safe for me also to be trying to navigate my way down a hall as well.

6. Give Lauren lots of medication.
Rationale: I'll do anything to help her get better. And she actually really likes taking her medication... except her iron supplement. I tasted it. It's gross.



7. Sit Lauren in front of the TV.
Rationale: Lately she has been getting up from 10pm to 1am with insomnia as a side effect of a new medication (which we will be taking her off of asap!). After a full day of baby and my own exhaustion, a little Tangled or Secret of the Wings is not the worst thing that could happen. She also enjoys any programs with singing and dancing or hockey. The perfect combination of myself and Matt. 


8. Let Lauren wear dirty clothes.
Rationale: If I do any more laundry, I'm afraid that my laundry machine will break down or go on strike. I do enjoy folding her little clothes though. I'm sure that novelty will wear off.

9. Cover my house with photographs of Lauren.
Rationale: Can I help it that she does so many cute things and I want to be able to look at all of them?



10. Wear sweatpants every day and not put on makeup. 
Rationale: Matt now calls Elysha and I "The Sweatpant Sisters". If I'm going to be spending my whole day in the house, either playing on the floor, getting covered in baby food (there's some on my shirt right now), and snuggling Lauren, I need to be dressed for comfort. I sometimes think that What Not To Wear is going to show up on my front door and show me video of myself from the last two weeks but I think I'm wearing the same outfit that I've been wearing for the last two weeks so it would be a short video. I'm just thankful that I have a baby and a husband who love me no matter what I'm wearing or what is on my face. (Oh, yeah, that's not going on the blog - but you can see the sweatpant proof in the top of this photo of Lauren and her bottom teeth.)


There are many more things that could go onto this list but all I know is that at the end of the day I have a baby who is working on getting better, eating, and having good naps. She is happy, growing, and she knows that we love her. That is what is really important. 


16.11.12

READING IS OVERRATED

As the daughter of a librarian, I would expect her to know better, but Lauren's favourite way to enjoy books is by eating them. We sit in her rocking chair together and I'm sure that it looks incredibly precious to anyone who might happen by (in my mind it is exactly like a Hallmark card) and I pull out her favourite board book. As we snuggle in close, feeling the cozy warmth of each other under her pink blanket, she snatches the book from me and frantically shoves the corner of it into her mouth. Typical.






I'm supposed to be developing in her an early love of the written word but she only seems interested in eating the written word. I have now decided that Lauren will only be reading a handful of previously chewed books until she decides that books are for enjoying with the eyes and ears, not the mouth. Then the real fun will begin as we start on the hundreds of books that I have waiting for her and I to enjoy together.


15.11.12

FEARFULLY AND WONDERFULLY MADE

I do a lot of thinking as I put Lauren to sleep at night. I thank the Lord for her and I think about what we've got planned for the day to come. Sometimes I think about everything that Lauren has gone through.



I found a note that I scratched down a few months ago about Lauren and that simply said that Lauren was not an accident. When I first found out about her condition, I assumed that it was my fault. It was a birth defect, I gave birth to her so I must have caused it. It was mind boggling because I was such a hippie while I was pregnant. I ate well, suffered drug-free through allergy season, and switched to all natural cleaners (or made Matt do it). In fact, ALCAPA is a random defect in the heart. It happens in 1 in 300,000 live births and occurs in the first few weeks of pregnancy as the heart is forming. There is no reason for it. There is nothing that I could have done to prevent it and I have to think that everything that I did do to keep Lauren healthy helped to give her the best chance possible.

Sometimes, when bad things happen, we want to find a reason for them. I don't know what the reason for Lauren's heart defect is but I know that God prepared us for it way before we knew about it.


Matt and I struggled to have a baby because of a few medical issues that I have. After a year and a half of frustration and being told that the issues I had would stop me from having a baby, we found a doctor who gave us hope and helped us get pregnant with Lauren. It was such an amazing blessing! At 8 weeks, we had an early ultrasound and first heard the baby's heartbeat. I remember looking over at Matt and seeing the tears in his eyes. He was already so in love.

At a checkup when I was 12 weeks pregnant, my doctor couldn't hear a heartbeat with his handheld machine. He assured me that it was still early, so I swallowed my nervousness and thought back to the heartbeat we had heard weeks ago. A week and a half later I was at my first appointment with my obgyn and I watched as the smile melted off of her face as the heartbeat was silent once again. She arranged for me to go for an emergency ultrasound to check if the baby still had a heartbeat. I was hysterical before I even left her office. Matt came home from work and kept me company until the appointment. I drank so much water that I couldn't even walk by the time we got there. I just wanted to make sure that the test would be successful.

I was shaking as the ultrasound technician started the test. He was quiet for what felt like a very long time before he asked, "Your doctor wasn't able to hear a heartbeat?"

"No," I said. "Is there a heartbeat?"

He simply stated, "Of course there is a heartbeat."

I lost it. I mean, lost it. I don't know if I had ever cried that hard ever before. The ultrasound technician actually apologized but I was crying because I was so happy and so relieved. My little baby was still there. She was just quieter than most.

As Matt and I walked out of that appointment and through all of the months that followed we would often say to each other, "Of course there is a heartbeat." We saw it as a promise, as reassurance, and as strength to get us through anything that we were worried about. Five and a half months after Lauren was born, we saw it as preparation. We don't know why we have gone through this, why Lauren was born with this defect, but well before we knew there was a problem, God was giving us the strength and reassurance that we needed to get us through it.

Even now we say it . . . Of course there is a heartbeat.

Our little girl was not born with a heart defect by chance. God knew that it was there and He was there with us through it all. Our little girl was fearfully and wonderfully made.





14.11.12

POPPED!

When Lauren first went into the hospital I told Matt that the other kids would be jealous of her because she was going to have extra parties - not just Christmas and her birthday. On the really tough days while Lauren was in the hospital I would dream up things for the party and it helped me to picture a day in the future when we weren't surrounded by beeping machines, the distinct smell of the ICU and fear. A while ago, we got to make my dreams of a party a reality.



My mom, sister, and a good friend did a lot to help me plan and realize my vision. I spent many of Lauren's naps in the weeks before the party creating the decorations and details that I wanted to include.







Elysha and I decided to make minicupcakes ourselves (mostly because I'm too cheap to pay at least a dollar each for them and by doing them ourselves, they could be gluten free!). At first I thought that we had bit off more than we could chew.

The cupcake on the left was one of our first attempts. After seeing the reality of that cupcake I was pretty nervous. Thankfully the learning curve wasn't too steep and soon we were pumping out adorable little cupcakes.




We tried to keep things as safe for Lauren as possible by still limiting her exposure to any germs. (I have also made a "Please don't touch me" sign that hangs on her baby carrier for when we are out in public. Seems a little crazy but it is insane how everyone touches a baby.)


It was so wonderful to be able to put on a party to have people see Lauren out of the hospital and for her to see them. We are so thankful for everyone's support and some of them hadn't seen Lauren since she was in the hospital. What a change!




I wanted a way for people to share their hopes and dreams for Lauren since so many people have taken her into their hearts. My mom used her Cricut machine to cut out the letters and then I put it all together into the two swags. We set up a station with Sharpies and post-it notes and people added their wishes for Lauren to the wall. It was beautiful to see the wall get covered!





One of the things that has surprised me is the people that God has given to us to surround us and support us through this time. One special family we didn't even know when Lauren's heart first stopped. They were a family who had their own little girl in the ICU at the same time that Lauren was brought in. They were there to watch us wander in, blinded by our tears and disbelief, and they saw as we received news of Lauren's heart stopping again and that she was going into emergency surgery. From that first moment they started to pray for our little daughter - even in the midst of their baby girl going through her own cardiac surgery. In the days that followed the little girl's mom introduced herself and we learned that our babies shared the same name and were born just days apart. Her little Lauren was recovering from her surgery. I had seen her playing with a toy just that day. When I told Matt, he and I were so encouraged by watching their daughter progress and updates on her health and how well she was doing allowed us to dream of the same things for our Lauren. It is amazing how God gives us treasures like this and if you pay attention you can see how they are linked together. Sometimes, I guess, we may just be too busy to see them. But we were so bare at that moment that we saw this treasure and we are so thankful.  


When I look back at all of this I am amazed that God gave us so many treasures to help us get through everything. He started paving the way for us to be strong enough before any of this happened and he is still giving us what we need. 





Thank you to everyone who joined us and those who stayed away because you were sick. Now on to Christmas planning!
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