BLAM

On Friday I opened up my computer to work on Lauren's photobooks and everything hit me like a slap in the face. Scrolling through photos was like this...

Cute, cute, cute, cute, BLAM. 

When Matt and I first took Lauren to the emergency room, there was a little girl who came in shortly afterwards who looked like she may have broken a bone in her ankle. I said to Matt, "Thank goodness this isn't anything that serious." BLAM. Or how about way more serious. 

Every once in a while it hits Matt, Lauren or I just what happened and we start to cry. That was my Friday. With Lauren not sleeping and being fussy, I was feeling sad for myself that I had lost the baby that I thought that I had. It took a bit of encouragement from Matt to realize that our baby is here, sitting right in front of me, naked as the day she was born, wiggling around and smiling my way. Instead of focusing on who she used to be (and she was actually very sick but we just didn't know it)0 I have to focus on who she is now - a little girl who is trying her hardest to get better. 

A DIFFERENT KIND OF RESTAURANT

There are so many people that we are so thankful for but, with the weekend coming, I wanted to take a moment to mention a special thank you that was a surprise for us. Why is the weekend important? Because brunch happens on the weekend.

There is a restaurant on Granville Island called Edible Canada Bistro that Matt and I love to go to because they have celiac friendly food. Before Lauren was hospitalized, we were going with friends and family on a regular basis. When Lauren went in to the hospital, I emailed the restaurant to ask if I could set up a standing order for their weekend brunch and have someone pick it up. Within a few hours, the owner of the restaurant was at the ICU waiting room with a gift basket of celiac friendly goodies and a bag of celiac friendly meals. That blew our minds but then it went even further. We were provided with brunch free of charge every weekend that we were in the hospital. We tried to pay but we were told that our money was no good there.

If you're looking for somewhere great to go for brunch, lunch or dinner, check out Edible Canada Bistro. Tell them that Lauren sent you!

I know that as soon as Lauren is allowed out in public again we will be there again regularly.

UP ALL NIGHT

It has been one month since Lauren's last surgery. It boggles my mind to think that it has been so long but that might have something to do with how often we seem to end up bouncing back into there. In that month Lauren has changed a lot.

There are some changes that have been difficult. After the second surgery Lauren was often frightened, upset, and spent much of her time crying for no apparent reason. This lasted for about a week and it slowly seems to be going away or at least happening less and less frequently.

She has also made huge gains in her development. She is grabbing things with both hands, using her legs to kick at things (especially when she is excited), sitting again by herself and reaching all over for her toys. She is still behind in her development but her gains are happening so quickly.

The one area that is probably the hardest to get used to is Lauren's new sleep and eating schedule. We were warned by the hospital that she would likely go backwards in some areas of her development and this is the most noticable change. Lauren now typically wakes every 45 minutes to eat. This happens during naps in the daytime and also during her nighttime sleep - which means that it also happens during my nighttime sleep. After weeks of this, honestly, I'm exhausted. When she was first born, Lauren fed like a freak and gained 3 pounds in her first month. It made sense because she was only 5 pounds at birth, and it makes sense now because she is still underweight, but it is hard to be back on a newborn schedule when she was sleeping through the night. Nowadays I am getting up with her anywhere from 8 to 14 times a night. And I know that seems ridiculous. When I really think about it, it is more than ridiculous. But at night, when I've finished feeding her and she is asleep in my arms with her little hand gently resting on my chest, breathing slow and steady, with little pursed lips while light shines softly on her cheeks through the blinds, I know how I am able to get up over and over again to be with my baby. I might never have been able to have those moments of holding my daughter ever again. Now each of these moments is more precious to me than ever before and I know that I will be able to get up with her over and over again tonight.

YOUR SCAR

To Lauren, my beautiful little girl,

One day you will grow up and realize that not everyone has a line on your chest like you do. They may ask you about it and I want you to know all about the importance of that scar. Your friends will have scars from little accidents that they have, a scraped knee or cut from playing, and they may not even remember where their scars came from. We know that you won't remember getting your scar, but that scar is so important. You are alive because of that scar.

You scar makes you different. I'm sure that you have noticed that you go to visit the hospital regularly and your friends don't. They won't have to pay as much attention to their heart as you do, but there are other things that make you different as well. Being different is not a bad thing at all. There are so many things that make each of us different. Some people are really good at soccer, some love to do art, some people tell great jokes, and some people hate asparagus. None of us are the same as anyone else. You have many things that make you different.

When I think of you, I think of a baby who loves to smile at anyone and everyone. You have special quirks too: you love to be naked, you grab my hair and tickle your face, you like having your hands kissed, and you enjoy watching traffic. I also see some overarching qualities that you have. I see your joy for life, your curious nature and your ability to be content. These amazing gifts are also what helped you survive the experiences that got you those scars. From the very first moment that the doctors restarted your heart in the emergency room they said that you were trying to get up off the table because you wanted to live so badly that you fought. From day one you fought. Throughout your whole recovery your curiosity helped you to take each challenge as it came. You saw each step as something new that you would get through and your recovery progressed in leaps and bounds. I think this is also why your second recovery was harder. You had gone through it once and now you knew what you were facing and it was harder to push through when you had just done it weeks before. Your contentedness has allowed you to resettle back at home after such a traumatizing experience even though it is really hard to go back to just being a baby.

Through this experience, we have learned some things about you and about ourselves. Before you came into our lives we thought that we were happy and that our family of two was full. When you got here, suddenly you filled a hole that we didn't know even existed and it was so scary to think that you might be gone. You are so strong - stronger than either one of us! This whole fight was exhausting and scary and worse than anything we ever imagined that you would have to go through. But we were only watching it happen. You were the one who felt the pain and fear. You were the one who had your body cut into and the one who had to go through the healing. We are in awe of your strength. At 6 months old, you blew us away.



Getting your scar didn't just affect the three of us but it affected so many more people around the world. Right here, it brought our family closer together, it opened us up to love and tore down our defenses, and it did the same thing for so many people who heard your story.

I keep reminding myself that God knew you as you were being formed in my womb, when the defect in your heart was formed. He knew that it was there and he was with you as you grew. It was his timing that brought you in to the hospital. Sometimes I think, what if we had brought you in earlier, but that was not God's plan for you. And watching your journey in the hospital, I know that God was with you every step of the way. He was with us as well as we walked beside you.

Your scar is not a symbol of something bad that happened to you. It is a symbol of how strong you are, of how many people love you, and of the plans that God has for you. We walked beside you as you got your scar and we will walk beside you for as many years as possible after.

Baby girl, I am so proud of you. You are my daughter and I am so blessed to be your mom.

Your scar is a beautiful part of a very beautiful you. Without it, I would not have you.

MORE THAN FRIENDS

We have been so incredibly touched by the care and love of our family and friends. When something like this happens, you kind of expect your family to step up and be there for you, and our family definitely has. My brother has come to sit with us almost every night in the hospital without fail, our family has changed work schedules to be here early in the morning and late at night, and, no matter what, they have been here for us every time that we needed them.

This experience has also shown us the quality of our friends. We have friends who spent many hours sitting with Lauren in the ICU, friends who drove across town to bring us food, and friends who have prayed for Lauren like she was their own. Our friends have embraced our little family in such a way that my view of who is in my family has expanded exponentially.

One of my most beloved friends lives in Switzerland and she left her little boy at home with her husband and flew to the other side of the world to spend the week with us and help to support us in any way possible. On our nights in the hospital, she sat in semi-darkness waiting for Lauren to stir so that she could try to get her back to sleep so that I could get some much needed sleep. What an amazing sacrifice she has made to try to help relieve some of our stress. It has been such a blessing to have her here.

The sacrifices of so many people are mind-boggling to me and it makes me so grateful for all of the people who love us.  I have found that the actions of others are enabling me to be more generous as well. People have been so generous to us with their love, time, money, and service - how can I not pass on that blessing to others?

OLD HAT

Here we go again.

Lauren is cuddled into her crib for the night on the cardiac ward at the hospital as I snuggle in on the springy cot in the corner. We had two nights at home and then when we tried to give her solid food today she started vomiting again. It was not as serious as last time so they just checked her in to the cardiac ward for observation for the night. This seems to be our home away from home. I think I'm going to keep a hospital bag packed at home because we seem to be doing a bit of yo-yoing back and forth. 

Hopefully tomorrow morning we will head back home and not come back here for awhile... well, at least until Wednesday when she has a scheduled appointment. 

THIRD TIME'S A CHARM

Lauren had a good night up in the cardiac ward of the hospital so the cardiac team sent us home. She seemed to be doing better during the day and had some great naps and some fun playtime.

 
This is our fastest stay at the hospital yet. Hopefully the third time is the charm and we won't be coming back for anything other than visits.

 

Matt was really excited that we got to go home when we did because they were handing out free coffee and cookies in the parking lot. It's like it was meant to be.

 

 
So now we're back at home. We will give Lauren's tummy a bit more to settle down and then try to get her on solid foods. It amazes me that even during her time in the hospital and the weeks of being stuck in a bed, she is still progressing and learning so many new things when she is given the chance. She is getting to be such a big little girl!

 

MOVING ON UP

Thankfully that was our shortest stay in the ICU to date (and hopefully the last! We love the people there but come on). Lauren had her last episode of vomiting with her heart rate slowing at 8:30 this morning. All of her tests showed that there was no further deterioration in her heart so the doctors suspect that she did in fact catch a tummy bug. Lauren split her time today between taking some really serious naps and eating her toes when she wasn't sleeping.

Late this afternoon the doctors felt comfortable moving Lauren up to the cardiac ward for another 24 hours of observation. Right now Lauren is fast asleep and it is so nice to see. When we first came into the emergency room and she was vomiting and her heart was slowing and she was going pale, I was so scared. She had been doing so well at home that this trip back to the hospital was a complete surprise. I am so thankful that this visit has had a better outcome and that Lauren seems to be doing better this evening than she was just last night. I just want her to have a chance to be a regular baby at home and give her heart a chance to start to recover. 

I'm praying for a very boring night tonight and an uneventful day tomorrow which sees us home together again.

BACK IN THE ICU, PLEASE PRAY

Please pray for Lauren who is back in the ICU. Lauren was vomiting and when she does her heart rate plummets so she has been readmitted. Please pray that she is able to hold down food and that her heart rate stabilizes. Please pray that this is just a normal, baby tummy issue and not something more.

Updates to follow.

UPDATE: September 19 11:36am

Lauren has had another episode of vomiting this morning with her heart rate slowing as part of a vagal response to her vomiting. She did not lose consciousness and after a period of time her heart rate increased back to its normal rate. The doctors have done an ECG and an Echo and neither of these showed any indication of adhesions or other heart complications. We are still waiting for blood work to come back but all indications point to a stomach bug of some sort. Please continue to pray that this is the case and that she is able to recover quickly with no more vomiting.

BUBBLE BABY

Lauren had to have her second surgery because she had complications called adhesions. Like everything else that Lauren likes to do, apparently getting the adhesions to the extent that they were stopping her heart is very rare. Adhesions are just scar tissue that goes haywire and starts to grow too much and join parts of your heart that aren't supposed to be joined. You can imagine that having tissue linking parts of your heart isn't super conducive to it beating normally. While the reason for the adhesions happening is not clear, they can be triggered by her being exposed to any virus or infection. So until we are eight weeks past her surgery, Lauren is our little bubble baby. 

Today we are at 3 weeks, 4 days and counting. I love my house but I'm starting to go a little stir crazy. We are able to go for walks in nature, but I'm so excited that we are almost halfway through baby lockdown. 

FATTY!

On Thursday the pediatrician suggested that we should try to feed Lauren solid foods three times a day to try to help her sleep. The feeling is that a full belly and some weight gain would help Lauren settle herself at night rather than continuing to wake every 45 minutes. After her first surgery and a few days at home Lauren had gained 8 ounces but her ribs and spine were still quite prominent.

Yesterday my mom and I walked over to the produce store and bought some yams, squash and carrots to make some baby food with the baby bullet. I boiled up the yams and she took it right down! She actually cried at me after she saw the food container and I didn't get the spoon into her face fast enough. 

Three containers of food later, she was finally full.

When I changed her diaper last night I noticed that there was an obvious difference in her waistline from after her first surgery. She's packing it on! My goal for her check up on Wednesday is for her to be well over 13 pounds. We're well on our way.

ALWAYS BEAUTIFUL

When Lauren was first born, I decided that I would take a picture of her every day for the first 100 days that she was alive to be able to see how she changed over time. It was typically easy to find one photo per day as I often clicked away the whole day through resulting in thousands of photos a month. It seemed that Lauren was always doing cute things and I needed to send photos to her Auntie Elysha in California every day.

Newborn

One Month

Two Months

Three Months

Four Months

Five Months

 After 100 days I liked doing the photo a day thing so much that I decided to extend it to the first 365 days of her life (nope, 366 since this was a leap year). The day that she went into the hospital I had to decide if I would stop then or keep going. It was a struggle for me because I didn't want to remember her that way, but I also wanted the opportunity to remember her victory. When I first pulled out my camera, I did not know if she would survive. All we knew was that the doctors had managed to restart her heart but they didn't know what was wrong. I could tell that some people didn't agree with my choice to take pictures of her in the ICU in that state but, as I look back, I can say with certainty that I am glad that I made the decision that I did.

Six Months

Today I brought out my camera to take some pictures of my little girl. Some people see photos of her now and comment that her scar is healing really well or that it is nice and straight, and all of that is true. However, when I look at these pictures I see the clear blue eyes of my baby girl and her beautiful smile that lights up her face. When I look at her I see the victory that she claims every day. Praise the Lord!