28.8.13

LOVING LIFE



My little girl is turning into a little lady who loves life. Recent highlights of her growth and experiences include a full morning at daycare (first full day trial is tomorrow - eek!), riding in her bike trailer, getting to sit in the big girl seats in the car while we are working in the garage and petting, hugging and leaning on the dog (not really a highlight of his life though).

My imminent return to work has kept me really busy and that is why my posting has slowed down. It will likely stay slower as I try to balance a new addition to my life... but don't leave us! Lauren will still be ready to entertain with her craziness.


24.8.13

AUGUST 24, 2012.

This summer has been full of anniversaries for Lauren. She's oblivious to them and is satisfied with jumping, exploring the world upside down and shrieking with delight when she is excited about something. July 31st was an exciting anniversary - Lauren's Heart Rebirthday. D.R.E.A.M. B. The day that her heart started to get healthy. Then there was the anniversary of her having her first surgery, the anniversary of her heart starting to beat again and the anniversary of her being taken off of ECMO. But today, August 24th, is the hardest anniversary for me. I can still remember the day so clearly. 

Matt and I had had some concerns about Lauren after she was sent home from her first surgery. She started to have fitful nights and she would cry during the day. Like all of her other symptoms, this sort of behaviour is typical baby behaviour... but not for Lauren. Even today, she can fall face first into the ground and she will cry for a sum total of 20 seconds before she has gotten herself back together, wiped the blood off her nose and is off on her next adventure. As a baby, she didn't cry hard unless something was wrong with her heart. Unfortunately, without the tools in our house to look into her chest, we couldn't do much. 

On August 24th we took Lauren to a second followup appointment. On her first one, two days earlier, they had noticed that one of her major vessels in her heart was getting pinched off, making the blood move through really quickly, like when you pinch a hose. That would be fine if it didn't also mean that the pressure in the blood behind the pinch increased and her heart had to push harder to get the blood around. This appointment showed that it had gotten worse. Much worse. Suddenly we were sitting in the ICU again. Lauren's CT scan kept getting bumped later and later, she wasn't allowed to eat because of it and she hadn't eaten all day. She was crying in a way that broke my heart. Her little mouth would latch onto my arm, my neck, my cheek, anything to try to get some milk. In that moment, I couldn't give her the one thing that she needed, the one thing that only I could give her. It broke my heart to have to turn away from my little girl. 

Finally around 4pm, she was taken in. The CT room was directly across the hallway from the ICU waiting room so we went in there to wait. I closed myself in the small corner room to pump and after only a few minutes, the alarms went off. That piercing noise split right through my heart and settled itself into my brain. No, I thought, no. Matt knocked on the door and said so calmly, "Don't freak out, but Lauren's heart has stopped again. They are in there working on her." I still don't know how he managed to be so calm for me when I know he was reeling inside. Nurses and doctors were running in and out of the ICU, the ECMO machine, breathing support and paddles came hurtling down the hallway and I sat there in the doorway of the waiting room, staring out across the hallway at the room that held my little girl and all of the people who were fighting to keep her here in this world. The nurses who had come to know and love Lauren had tears in their eyes as we all willed her alive and doubted our ability to keep her here. They kept glancing at me as I sat in vigil. One nurse closed the door, thinking that it would be less traumatic for us if we weren't able to see the commotion just feet away from us, but after less than a minute, I couldn't handle it and I threw the door open again and sat myself down, resting my head on the cool metal doorway. I knew that I couldn't do anything for Lauren by sitting there, but there was no way I was leaving her alone. 

Then, miraculously, for a minute the alarm stopped. They had gotten her back... until they tried to move her little body again and it sent her heart in a tailspin yet again. The fight was on for a second time. Dr. Campbell, Lauren's surgeon, came to us and told us to say goodbye because she was going into surgery as soon as her heart was going again. It was in that moment that my biggest fear hit me. Did God heal her so that we could have this one final week with her? 

During Lauren's first surgery and recovery, I was so afraid but I was also convinced of the miracles that were going to happen to her. And they happened. Her healing was so much faster and so much better than we could have ever imagined. This time, I didn't know if she would be healed.

To go through it again without that same hope was the most exhausting thing that I've ever experienced. I can remember many times, trying to pray and having nothing to say. Words had failed me because all I could hear was the way that my soul was wailing. To pray in such brokenness was the hardest thing I've ever done. I felt no comfort, words of hope or uplifting thoughts. Everything felt so dark. Lauren came through the surgery and wasn't on ECMO but all I saw was the way she was suffering. She had recovered after her first surgery but now she was struggling. Her heart was so weak, she couldn't breathe by herself and she had a look of terror. How do you explain to a six month old that it was safe to close her eyes even though the last time that she did it, she woke up in such pain? How do you tell her that this pain is because we were trying to help her? No amount of hugging or touching or singing or talking could take that away. And I wanted nothing more than to keep her from pain, like any parent would. 

In the middle of my despair, I doubted in the promise that God had made to us that Lauren would be healed. During Lauren's first surgery, we had heard clearly, right from the beginning, promises that she would be healed. People had visions of her healing, others heard words or verses. We had both. But this time, there was so much silence. I never once thought that God wasn't there, I just didn't know what he was doing. I knew he was there, crying alone with us. I knew he heard my heart as it lay broken, but I didn't know if he would fix it. And dealing with that doubt is one of the hardest things that I've had to do this year. I have felt such guilt for my doubt. I knew that God was there, and I knew that he was with us, but I didn't know if he had taken away his promise. But God's promises don't change. 

A year later, I can see the fulfillment of his promise in Lauren and the way she is able to run around like any other child. At the time, my entire being ached for Lauren and that blocked everything else out. Watching her as she struggled to recover cut deep into me. Knowing that this surgery changed her and made her afraid, killed me. She had been such a happy child and now she was terrified. However, even though I couldn't see it, God's promise for Lauren was still his word. And his word doesn't change. 

We got to experience miraculous healing and we got to experience hard healing. Now, looking back, I choose to say that we got to experience these things and both of them have been a blessing to us. The miraculous healing changed us, we saw the power of the Lord, the power of prayer and the amazing support system that we had filled with people who loved us and loved our daughter. The healing that Lauren struggled through also changed us. Our level of understanding of suffering and empathy for others with sick kids increased exponentially. Our dedication to Lauren and her healing changed us as a family because we chose to cling to one another in a time when it would have been so easy to push away and be alone. Our willingness to submit to God withstood an extreme challenge and, even though we didn't know what the outcome would be, we knew that the best thing that we could do was hand Lauren over to the Lord. 

August 24th, 2012 was one of those days where I learned the most about myself. I am a mother who will not give up on her child. I am a woman who cries out to the Lord. I am a wife who is blessed with a loving and praying husband. On that day last year, my world collapsed and I didn't know if I would get it back. Today, by the grace of God, my world is filled with diapers, bath time and family dinners. Today, just like last year, God's promise of healing for Lauren is just as real as it was a year ago. Today, I am humbled by the blessings that I have received. 

21.8.13

WHAT HAVE WE BEEN UP TO?

Phew. After that last post, I needed some time to lay low and play around with Lauren. In the last week we have done many simple things together like digging in the dirt in the backyard, reading lots of books and going to Costco (once on purpose, once because my car broke down and it was right beside a Costco. There are worse places to break down. Lauren spent a solid 10 minutes playing in a garden shed display while we waited for my dad to rescue us.). Lauren also got her first cold... which meant that I also got her first cold and she figured out that a party happens every night after she goes to bed. We got to do Sleep Training: Season 4 with her and thankfully, for the last two nights, she has slept through the night again.

Here is a quick look at our lives this week...

Best thing for a sore throat: a homemade popsicle.
 Costco wandering.
 Duplo exhaustion.

 I don't think she's impressed with me leaving her with the geese to take a picture.
 Nope, she just wanted to chase them herself.
 Guinea pig visit!
 Playgym for a friend's birthday party.

 Digging aftermath.
 Exhausted.
 Lauren's own mini sized couch.
 Umm, Lauren got to go crazy in a change room at the mall and it was the highlight of her life. 


We've been working with Lauren on some sign language so that she can communicate what she wants. She has only been using her tongue properly in the past few months to eat so it will take a bit longer before she can talk as much as she wants to. For now, she's catching on to the sign language really, really quickly. She can now point to an object that she wants and sign please, she shakes her head no, signs when she is all done something and has learned the sign for eat. We are in the process of working on "open" and "close." I don't think those ones are super important but she seems to find them entertaining, so I do them. It's amazing what these little people can make us do if they promise us a smile.

14.8.13

I DIDN'T KNOW LAUREN PLAYS BASEBALL

There are some days where I get so frustrated. Not with Lauren, but with the medical microscope that she seems to be under. I appreciate each and every doctor's visits. I love the group of medical specialists who work so well with her. But I hate the testing.

Having been on ECMO, Lauren will be tested for long-term issues that may be attributed to the life saving machine that she relied on for three and a half frightening days. While this machine certainly saved her life, it also posed a huge risk to her health, her brain, her physical and mental ability, and today we found out that it continues to pose a threat to her. When Lauren was put onto ECMO, we had a basic understanding of some of the complications that could some with it such as seizures, stroke, embolism, or mental and/or physical impairment. We breathed a huge sigh of relief when they removed her from the machine because, as much as we relied on it, it repulsed me for the things that it could be doing to our little girl. Today I found out that there are still issues that may arise from her time on ECMO.

Lauren went through a three hour assessment. The first portion was with a nurse and a pediatrician. They had read much of her chart (an impressive feat in and of itself) and she got to play in a room filled with toys and people who were focused on her while we chatted about how she has been doing. She has her "toddler-doms" that showed such as her picky eating (which is similar to many other tiny people) or her fascination with anything and everything that she can get her hands on. Otherwise, they were quite happy with how she is doing for all that she has been through. It was generally encouraging and confirmed my feelings about Lauren's recovery. Lauren had a blast and was even completely still while the doctor looked in her ears and eyes. Normally that takes a full body tackle from mom to achieve.

One concern that I have with Lauren is her speech. At 18 months she says hi (at appropriate times and waves), no (also at frustratingly appropriate times), wow (usually at butterflies or some other new or exciting thing, usually accompanied by pointing) and mom (when she's sobbing on my shoulder). Other than that, she doesn't talk. I know that Lauren is aware of conversation as she is constantly babbling, using intonation, dramatic hand gestures and different volumes. She responds to simple commands and spends much of her time looking at books, "helping" me in the kitchen, playing outside or in the living room or walking with us outside. That is her world and those are the things she knows. Apparently 15% of children who have been on ECMO having future hearing loss  so she will be tested for that in the next while as that might impact her speech development.

The second part of the tests was a physical assessment with fine motor and gross motor skills and a speech assessment. This is where I lost it... because she did. On Monday night, Lauren was up most of the night with a rough cold. It is her first cold ever and she her nose was totally plugged, impeding her ability to suck her fingers (which she does to fall asleep or comfort herself) and she was losing it. I ended up sleeping in the guest bedroom with her and, as precious as it was going to be in my mind, reality was not like that. Moms know what the night was really like. Anyways, so today she is still tired and a little sick and this 90 minute assessment was scheduled to start at noon... right around the same time as Lauren's nap. That was strike one.

Those people who have seen Lauren in her natural habitat have used words like "feisty," "determined" and "non-stop" to describe her behaviour. She is delightful, yes, but she is also ridiculously active. She doesn't sit. She's 18 months old and curious about everything in her world. Strike two was that this whole test had to be done with Lauren sitting on my lap. Lauren doesn't do laps. If she is tired, yes, if she is not tired, forget it. Much of Lauren's focus was on trying to wriggle and flail and scream herself out of my grasp, rather than focusing on the "test." I understand standardization in tests, but is working on the floor really such a bad thing? Lauren would have been much more agreeable and focused on what she was supposed to be doing.

And stop taking everything away from her! Strike three. After enticing her to look at an object and interact with it in some way, suddenly it was taken away. I'm not 18 months and I would have been mad too.

Anyway, so here is how the test went. Really great at first. Lauren was rocking the show and then she got mad. Mad that she was on a lap and couldn't get down. Mad that she was tired and wasn't in bed. Mad that everything was being taken away. Mad, mad, mad. And as her stress went up, so did mine. I don't care if she can't do everything, I don't expect her to, I just want the test to be a fair reflection of what she is able to do. It made me mad because I've worked so hard with her, going to all these appointments, listening to all of the ways that I can help her, doing every one of them with her and then not actually giving her the opportunity to show what she can do. ARGH!


When the speech and language part came around, Lauren was done. D-O-N-E. Done. There was a book and Lauren had to point to certain pictures. "Lauren, where's the ball?" Oh, you mean the basketball that looks nothing like any ball she's ever seen? "Lauren, where's the cookie?" I think Lauren has had three cookies in her entire life and they were never full cookies so they never looked like a circle. "Lauren, where's the clock?" Seriously. We don't even own a clock! I don't know if she's ever seen a clock in her entire life! It amazed me how situationally inappropriate much of the testing was in this area. What are the words that I expect Lauren to know... juice, water, cracker, food, bath, toy, duck, dog, shovel, spoon, fork, phone, bed, blanket, and people's names. Things that she actually comes into contact with. For instance, the fan that we have in the living room is tall, narrow and white. She knows that it blows air and she likes to give it hugs (which is weird but endearing). I wouldn't expect her to see a picture of an old circular fan and know what it is. It is nothing like anything she has ever experienced. She definitely wouldn't think she should hug it (which is probably a good thing as that type of fan isn't as friendly). So Lauren bombed the speech and language part.

And then at the end, as she was heading out of the door she waved goodbye. That's the kicker for me. No, she doesn't say much, and she uses her gestures to communicate while she babbles away but she knows to wave at anyone she hears say "goodbye" or "see you later" or "talk to you later" or "I'll be back" because she understands the language that means something in her life. So, whatever the paper says when we get the results of this testing, I know that Lauren is rocking the show. She might not point out which one of four items is a ball because she just wants to pick them all up and play. But when the pediatrician told her to sit down on the exam table, Lauren plopped her little butt right down and smiled at her. That's my girl.

I was so upset after Lauren's testing because it momentarily changed my perspective. My day to day perspective is one of her healing and the miracles that God has given to us. Today made me focus on possible areas of deficiency, as opposed to areas of success. And that is not a place I want to live in. That place is filled with uncertainty, fear, doubt, worry and anxiety. My depression lives there too. To focus on the miracles, big ones and the little things to be thankful for day by day, helps me to live in a place where I embrace God's promise of healing and life. He promised healing for Lauren and his promises don't change, nor are there conditions. She will continue to be healed and she will be special because of the abilities that she does have, not the ones that she has yet to develop. And give the girl some time. Wait until she's had a whole year of a healthy heart instead of just a few months. Watch out, world!



12.8.13

PURGE THAT MEDICINE!

When Lauren was in the ICU, one of the best tips that we were given was to hoard the oral syringes and plunger tips so that we had extras. We typically use the same oral syringes for Lauren for a few days in a row and then they go into a container that I have for cleaning and sterilization. The cleaning and sterilizing of the syringes takes quite awhile so it is nice not to have to do it all that often. 

Over Lauren's multiple times in the hospital and through the tests that she's had to have as an outpatient, our collection of medical supplies had grown and grown. I've kept all of it in a drawer in her nightstand that she knows that she isn't allowed to go into (so she often stands at the drawers, makes eye contact and slowly opens the drawer as I say, "No." It's super effective apparently because the next thing I know, she has pulled the drawer open and she's pulling out all of the clean syringes.). Naughty angel!


After hearing that her heart is recovering well and her medication will start to be slowly reduced in January, I figured that I could finally go in and clean the drawer out since fewer things in the drawer mean fewer things for Lauren to "reorganize."

This is the mess that I started with. I will say that I am typically very organized in drawers and cupboards so for me, this was getting out of control. There are medicine bottles, new prescriptions, saline syringes, clean syringes, teething drops, alcohol swabs, medicine cups, gauze, adhesive remover and, of course, a comb. 

I was able to get it down to just a few items in her drawer. I got rid of all of her "R" syringes since she is no longer on Ranitidine and all of her "L" syringes since she no longer needs Lasix. The "T" for Tylenol syringes have gone as well because she has cut all of her toddler teeth already. Since there are no surgeries or tests with adhesive coming up any time soon, I got rid of all of the wound care items. I still kept the comb which seems strange now because Matt always brushes her hair with a brush. I love the empty space that is now available in the drawer. Hopefully one day it will be free to be filled with hair clips, bits of costume jewelry and special items that Lauren has collected.


Next, onto my medication!

11.8.13

YOU ARE IN TROUBLE


That's what a couple at Lynn Canyon said to us the other day as they watched Lauren barrel into the freezing cold mountain water... and stay there. "She has absolutely no fear."

You know it's bad when complete strangers who have seen her for all of 37 seconds, pick that up.

Matt and I have made the most of his vacation time the week, taking Lauren on all sorts of outings and enjoying our time as a family. It has been so good to get to spend so much time together as a family.









And, also, for anyone who is counting, today Lauren is exactly a year and a half old! What a wonderful day this is. I think, to celebrate, I might take a Happy Half-Birthday nap when she does. It's been a busy week.

7.8.13

EAT DESSERT TO SAVE LIVES

Matt and I are getting sick of commercials that make us cry. Seeing sick kids or kids in hospitals brings both of us close to tears. But what makes us really cry is when the commercial is about helping these kids. Have you seen this commercial?



I know that on August 8th, Matt will be having a Blizzard. As someone with celiac disease, I will enjoy one vicariously. Lauren might have to have her first taste of a blizzard, because, on that day, the full proceeds from every Blizzard sold go straight to our local Children's Hospital! Now, who doesn't love a Blizzard?

So, tomorrow, at lunch, for a snack or after dinner for dessert, head down to a DQ store and pick up a Blizzard. There aren't many chances to have such a delicious opportunity to help sick kids.

See the full details here.

If you get one, let us know by a comment here or on Facebook. There is no excuse not to!

6.8.13

WHAT A DIFFERENCE A YEAR MAKES!


One year ago, this past Sunday, Lauren was on ECMO, the heart and lung bypass machine. Her heart was laying still inside her chest and they weren't sure when it would start to beat again. I remember the first moments that it started to flicker. It was not regular and it wasn't strong enough to push any blood, but sitting there with Matt as we whispered words of love into her ears, it started to move. We felt such victory in that moment! 

This past Sunday, Matt brought Lauren up to the front of the church for the kids' story. It was so cute to see her sitting up there on his lap surrounded by all of the other kids. They talked about the story of Joshua and how they marched around the walls of Jericho and the kids were invited to march around the altar at the front of the church. All of the kids, including Lauren, popped up and started to go. As she walked further away from Matt, she started to slow down, but all she needed was the smallest encouragement and all you could see was a little blond head running along around the altar. 

I thought that I was the only one who found this to be an amazing victory but so many people stopped us afterwards and asked us if one year ago we could have pictured this. I had to excuse myself because I started to tear up, while Matt managed to get out, "No, one year ago today she was on a heart and lung bypass machine." We weren't the only ones who realized that this was a day that we were seeing the outcome of a miracle. 

Matt has taken this week off of work. He did the same last year but we had our unexpected "vacation" in the ICU. This week has been so much better! Today, we took Lauren to the ocean for the first time. And there was no getting her out of it. 









She spent two hours in the water! Every time that we would take her back up to the blanket, she would pop up and head back down the beach. She's a natural water baby. 

And on a side note... do you see a scar?! It has cleared up so much on the top half. The bottom half is still darker because they had to cut it open for her pacemaker incision in December. I'm sure that it will clear up just as well.

5.8.13

PIGTAILS!

Lauren's hair has gone through many stages.

When she was first born, it was brown and there was a lot of it. In fact, one of the first things that Matt said when he saw her was, "She's got hair!" It was so soft and fluffy. I still remember rubbing my face through it and inhaling that beautiful baby scent. (Oh my gosh, looking at this picture, I just want to eat her up!)


Then the bald spot from the bed appeared.It came late so I thought we might have avoided it, but we had no such luck. I kept telling myself that it would grow back but...

Instead it spread and she ended up with nothing but a "backstache." That only lasted for a few days and then total and complete baldness ensued.
She was cute and chubby and bald. No hair clips for her!
 I swear she stayed in the hair fuzz stage for months!
 A close crop.
Finally it started to grow... but mostly just on top a bit and at the back. She has a legit mullet now. I try to class it up by calling it her moo-lay, but it is hard to spin it. My little girl is sporting a mullet.

But yesterday our problems were solved as she finally stayed still long enough for me to wrestle her hair into two delicate little pigtails. The first time I tried to get them in there, she ran through the house yelling with me trailing right behind her trying in vain to grasp her little wisps of hair.

Finally, success!

1.8.13

ONE YEAR LATER


What an amazing day July 31st turned out to be!

I woke up to this...
Oh, no, this wasn't what woke me up. It was Lauren screaming her head off with glee in her crib. Literally screaming. I went in and she was holding the rail, jumping and screaming and having the time of her life.

Matt came home early from work and we set off to the hospital with Elysha playing the role of official photographer. Matt had arranged for there to be a large cheque with our final donation total as we handed in the last of the money on that day. Our goal for the fundraising was $3000. On the day of the garage sale, we brought in more than that in cash alone! We were flabbergasted to find out that we raised $9000 in total! Take that, goal.


We took a picture of Lauren with the cheque and she thought it was great. They've asked us if we would be interested in sharing Lauren's story with the Miracle Network and/or during fundraising events or volunteer events. One of our prayers was to find ways to continue to give back and this is such an answer to prayer. Of course we said yes! Let's see what we can get Lauren's face slapped on.

I'm glad that we went there before going to say thank you to the people in the ICU because, let me tell you, my makeup didn't look as pretty coming out of there.




We brought in a box of KitKats (for a "break") with a thank you wrapper and we were pleasantly surprised to see her primary nurse, Princess Carrrie, there! It was perfect timing. But then it got better and better. Her nurse, Tanessa, was there, a bright and spunky nurse who often had us laughing in the ICU, a place where laughter is rare. We were visiting and then another of Lauren's primary nurses, Carolyn, was there. This is a huge deal because Carolyn doesn't even work in the ICU anymore! She was just on-call and happened to be in that day. But wait, Lauren's last primary nurse, Anna, was there too, another nurse who doesn't even work in the ICU anymore but just happened to walk in. It was so nice to have them all there to show Lauren off and say a few words. The doctors and surgeons are often seen as the ones who do the amazing work, but these nurses are such a huge part of our time in the ICU. They were the ones who were at Lauren's bedside, watching over her 24 hours a day. They forged relationships with us, showed so much love for our little baby and made us feel like she was safe right where she was. They surrounded us with so much love and support and we were strangers to them when we first walked into the ICU one year ago, tears streaming down our faces as we saw our little girl laying in that bed. It takes a special person to be an ICU nurse and we are so blessed that were able to have our daughter cared for by them.

So, after sharing that with them, and crying a little, we were also able to give them small gifts to give to the parents of the children currently in the ICU. I know for us, we were so touched by the kindness of people, many who barely even knew us. I wanted to be able to do something to try to show that kindness so we gave KitKats with Starbucks cards to encourage people to take a much needed break. The nurses always told us that we needed to take care of ourselves to take care of Lauren but it is so hard to take that break. In the evenings, Matt and I would take the time to go for a walk around the outside of the hospital and it was often the only sunlight that we saw. We would walk around and crunch the fallen leaves under our feet and try to talk through some of what was going on.

It was a day filled with Lauren being her crazy self and brightening up our lives. In the evening my family came over and, after Lauren was sleeping like an angel, we ended the night with a prayer of thanksgiving. I can't imagine what our lives would have been like if we were anywhere else on the afternoon of July 31, 2012. And thankfully I don't have to. This year, July 31st was a day of celebration. The only tears shed were happy ones.

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