Thank God for Modern Medicine AND insurance!

Canon Joy in 3D 05-16-12

I'm sitting here listening to the rhythmic gallop of Canon's heartbeat on the monitor tethered to my bed at Queen of the Valley hospital. It's comforting to hear those steady thumps and swooshes of movement while I lay here and I enjoy looking at Canon's most recent ultrasound a couple of times a day because our daughter is quite cute if I do say so myself!
On May 16th we went in to see our perinatologist and little C had absent blood flow in her cord again and did not have any growth. Because of her heart defect, the fluid on her brain and her very small size the doctor said it would be best to head into the hospital for monitoring, steroids to help the babies lungs develop and bed rest. I am praying for a miracle for our little girl, I know she's in God's hands and He has plans for her life! It's hard to be surrounded by these pale blue walls and machines....especially since I am only on DAY 2!! I am just going to have to find some new hobbies....perhaps internet gambling or online gaming! 
This afternoon we had a visit with the Neonatologist (a doctor that takes care of preemies). Kevin dubbed him Dr. Bummerstien but despite his monotone delivery he gave us good information and helped us understand more what Canon's stay in the NICU might involve. He discussed the different complications that can arise for a preemie baby and the conditions associated with Down Syndrome. I was really hoping to hear some outcomes on babies like ours but I guess she's a special case, he could only speak to the challenges of preemies and the challenges of babies with Down Syndrome, he said he doesn't often have those conditions present simultaneously and each situation is unique. He assured us that this is a state of the art facility with excellent surgeons and Canon will be in good hands!
There are certainly a lot of conditions that could become a reality should she born premature and the fact that she has Down Syndrome further complicates matters but we are still optimistic! Why worry about things that may or may not happen? Now that I am on some serious bed rest...not much moving around in the hospital; I have realized what a swimmer Canon is! She is only measuring 27 weeks to my 30 week gestation so she has quite a bit of room in my tummy and she has been using ALL of it. She has been giving the nurses doing the heart monitoring a RUN for their money! Every time they catch her she swims away and we end up spending 25 minutes trying to get her to stay in one spot so her heart can be monitored. Even though it's frustrating, it kind of makes me laugh...little stinker just won't sit still!

Dessert Sunset
Photo By Kevin Still

Speaking of swimmers! In other news, my entire family came for a visit for my baby shower (more on that beautiful day later!) last weekend. We spent a little time in Palm Springs sunning and swimming with lounging for me! It was wonderful to have my family with me and the giggles and shouts of my nieces and nephews totaling 6 in all now really raised my spirits! 
All the kids were absolute fishes! It was so fun to see them all interacting and playing together. Madelyn is my brothers oldest, she'll be turning five in August and Micah is my sisters oldest, he turned five in April and they sure do have A LOT to talk about these days! Hilarious conversations ensued as well as dousing each other at every opportunity with the super soakers provided by Grammy and Papa. Livia is my sisters two year old daughter and she is quite the swimmer! Already going underwater by herself and she loves her some goggles!! I just love spending time with all of these kiddos and I feel so blessed that I have a family that took the time and made the effort to cart their three kids each to California for some family time! Not to mention Grammy and Papa who stopped in on their way to Thailand...it's going to a long three weeks for them, such travelers they are now!

Livia Joy Loves Goggles
Photo by Kevin Still

I don't want to brag too much but I am pretty sure I have the cutest nieces and nephews this side of the USA!!

My brother Josh's Adorable Family
Photo By Sarah Moritz

My sister Amy's Beautiful Family

"Welcome to Holland"

Photo By Kevin Still

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world

as it is, not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him

Forever in the next.

Amen.

The Serenity Prayer is something I have seen and read over and over and yet never really reflected on. I guess I thought it was cliche but then cliches are cliche for a reason right? Phrases, poems and stories become cliche because they resonate with large groups of people and thus become overused and eventually begin to lose their original meaning. Today I was thinking about how to handle things that are out of my control and this prayer just popped into my head. I realized that sometimes despite my best intentions to the contrary I end up beating my head against a wall trying to change things I have no control over. I think this prayer is a poignant reminder that part of what it takes to be happy is my ability to understand and remember that while circumstances may be out of my control I can focus on what is in my control, my response to the situation. It's a constant battle because we all have people or circumstances that we really want to change but ultimately have no control over. I worked with a woman many years ago that was super disorganized, didn't have what I would characterize as a great work ethic and had what I thought was this wild personality when interacting with customers. I kept trying to change how she did things and change them to my way of doing things, mostly because I foolishly thought my way was the right way or a better way and of course she would be much more successful if she was just doing things my way. I actually feel really guilty about that now because I've come to realize that her way worked. It worked for her. It would not have worked for me and I wouldn't have liked running my business that way but it worked for her. I think about these things often now because lately I've really been having to find the joy and the beauty in the unexpected and out of control! Becoming a mom means that someday soon I am going to have a little person in my house that is going to have her very own way of doing things and I may want her to do it my way and she may not want or be able to do it my way. I've been praying that God will give me the grace and love to let things be out of my control…….There's a well known essay called "Welcome to Holland" written by Emily Kingsely about having a child with a disability. The piece is given by many organizations to new parents of children with special-needs. The essay employs a metaphor of excitement for a vacation to Italy that becomes a disappointment when the plane lands instead in Holland.
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
The metaphor is that the trip to Italy is a typical birth and child-raising experience, and that the trip to Holland is the experience of having and raising a child with special-needs.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
In the end, however, the reader sees that the "trip" is still well worth it and comes to the realization: But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I really love that essay.

Life is like a box of chocolates....you never know what you're gonna get

Ok, so I'll admit....sadly that's not us in the picture BUT it is what we FELT like doing yesterday after we left the pediatric cardiologists office at Children's Hospital in Orange County yesterday! Our little Canon is not going to wait until she is born to make an impact on this world, just like her dad she likes to be unique! I think she has decided that she will begin her testimony of God's power and love at the earliest opportunity....the womb!
Yesterday we went in for our second fetal echocardiogram to check on the status of Canon's heart. It's really amazing that these doctors can see a heart inside of a body that's inside of a body and is currently the size of a grape! Anyway, the last time we went to the doctor he said he saw a large hole between her right and left ventricle, her atrial valve was small and her aorta was too narrow to pump blood outside of the womb. Inside, she can use my blood. All of this was scary but he said outcomes were very positive, she would just need surgery when she is born and several throughout childhood to work on these heart problems. We have been prepping ourselves for a major NICU stay at birth. 
The doctor didn't say much during our fetal echo yesterday except, wow this baby is active...he said that about 10 times. I think she was playing tag with the sonogram wand, either that or I swear she can hear it because she was really getting wild in there! At any rate, we weren't sure if we should take his silence as a bad sign or a good sign. As soon as we were done he took us into another room and and sat us down.........ominous..........then he said. "Well, here's what I see. I see your other cardiologists report and I see there was narrowing of that aorta but from what I can tell that is no longer there. I also see that there was a large VSD (hole) between the right and left ventricle and now it is moderate and....." he hesitates a bit here....."well there's some tissue hanging out near the hole, so it's possible it may grow over it." 
WHAT?? So, doctor, are you saying that her heart problems are not quite as problematic as before?? She may NOT need surgery when she's born? And he said the sweetest words "At this point, she has a lot of growing to do, no guarantee but I think she's going to be fine."
Kevin and I were just grinning the whole time he was talking. My faith was really not big enough to accept that God would heal OUR baby. I've been praying and praying that He would but I've also had to be practical and prepare in case He has another plan. I know there's still no guarantee that she won't need surgery, this is just a vast improvement from her fetal echo a month ago but I can see God answering the prayers of the MANY that have gathered in His name to pray for the healing of Canon and that is just AWESOME. 
A couple of years ago I used to do hot yoga for 90 minutes everyday. Those clases were never easy but they taught me a lot about perseverance; when it got tough and I felt like I wasn't going to make it I learned to just breathe focus on the end and breathe. Training for a half marathon is the same way, it doesn't matter how fast you go or if you run the whole way but you must finish each workout (let's not get crazy, I still have no desire to run a FULL marathon!!). Each time I've finished something challenging I've known that the next time I encounter a challenge I will be able to do something even harder because I got stretched. I can admit that I have been stretched pretty thin these last 6 months and I continue to be unsure of what's going to happen with Canon. I pray all the time that God gives me more faith and carries me through this pregnancy and helps me be the best mom I can be when she's born. I've been amazed at the strong will of this little one to keep going against all the odds! I've been amazed that God is answering our prayers, I guess I'm always amazed when God answers my prayers because I know that I've done nothing to deserve it, it's all by grace. 
I guess Forest Gump's mom had it right after all......Life is like a box of chocolates, you never know what you're gonna get! Even though it may not be the chocolate you were hoping for, it's still sweet and it still tastes good!

It's the Small Things

 "Big Biscuit Gets a Bath" Photo by Kevin Still

This morning at 4am I woke suddenly and remembered, Oh No, we left our car on the street in front of our house.  On the mean streets of my neighborhood that is a BIG no no and you will get a ticket. Thus, when we jumped into our car this morning to head to the doctors office I was un-phased to see a FAT $75 ticket on my windshield....The thought did cross my mind however....since when is it appropriate for a city to give you a $75 ticket for parking in front of your own house? Then again, in our old neighborhood the car would have been gone so I guess a ticket is a step up! 

The cameras kept rolling and when we got home from the doctors office this afternoon there was a pink letter stuck in my front door...hmm, what could this be? Well, I'll tell you what it was dog lovers! The city now requires you to have a license for your pet and if you don't you are assessed fee after fee totaling up to a WHOPPING $160.....for a dog.  

The last thing I did tonight before I moved from couch to bed this evening was walk into my kitchen for a glass of water...I thought, hmmm, it smells musty in here! I decided to check under the sink and low and behold, what did I see but a puddle of water. Not exactly the glass of water I was in search of.

I thought it was funny though because none of these things really bothered me as much as they normally would! I said to Kevin,"Hey! A lot of things are going wrong today and he said "No they're not! Today is a great day!" and you know what?? It was!! 

What do I say to these three inconveniences today? AKOONAMATATA friends! It's from the Lion King for those of you that need to brush up on your Disney! It's funny how growing a little human inside of you gives you perspective on life! I say Akoonamatata because we went to the doctor today and he said there was a big improvement in little Canon's blood flow and she had grown!!!! This little lady has been kickin' those small little heels up in my belly all day long. In fact, I should have stopped on the way home to purchase some tiny, pink cowboy boots for this little lass because she is going to need them when she gets here! So, despite the challenges of the day I am going to bed thanking the Lord that our little girl is growing once again! Thanks to everyone for your prayers!

    

The Importance of Hope

Canon's Mom at 26 Weeks
 Photo by Kevin Still

Have you every considered the importance of hope in your life? Life is not an easy road, there will be a lot of challenges and I've begun to see hope as a way to propel yourself through even the most difficult of circumstances. 
This morning we're heading out to see the doctor again....you know the one, the scary perinatologist, the guy with the gloom and doom bad news?? Anyway, I was reflecting a bit on my mental state because I realized I felt hopeful. I thought that was funny because typically I operate under the delusion that every difficult situation I have in my life can be solved by MY actions, I can study harder,  I can prepare and I think I can MAKE something better. I was thinking this morning that part of the reason this pregnancy is so frustrating is because I feel so helpless! It doesn't matter what I read or prepare because ultimately Canon's life is not controlled by me and that got me thinking....why do I feel helpless but NOT hopeless?
I remembered a verse this morning and of course I had to look it up, but the Bible also talks about hope and faith together in Hebrews 1:1: Now faith is the assurance of things hoped for, the conviction of things not seen.  I am not a theologian so don't hold me to my interpretation of verses but I was reminded that HOPE comes from God and it is important but hope also comes from within. I know that even though I cannot see the outcome ahead of me or what will happen today, tomorrow or the next day I have the assurance that God is in control of the outcome and He will give us the hope and strength to get through life. That's the strange thing about hope, you don't hope for what you DO see but for what you DON'T see....kind of like faith. My hope has to be in God's goodness and grace that He sees the outcome and it's what Kevin and I need; maybe not what we want but most certainly what He has planned for us. Here's HOPING for a good appointment!

  

Day 5 of Bed Rest

I have now completed day five of my 14 days of bed rest to see if blood flow will increase to our little babe and I have to say I REALLY miss running! I know that there are A LOT of people out there praying for our little Canon and that makes this process easier BUT....I still miss running. I just miss running around....I miss running down my stairs, I miss running in my neighborhood, I miss jumping in the car to run an errand and mostly I miss doing things for myself. We have been overwhelmed and incredibly blessed by the support we have received from family and friends. Family calling in every day to check in on how we're doing and how I'm feeling and friends that have been SO very generous in bringing by meals despite their busy lives and obligations to their own families. I really don't know what I would do if we didn't have all of these amazing people rallying around us to support us, it's been a pretty awesome experience. All that being said.....I am still signing up for a HALF marathon when this little one is out safe and sound and home with us. SO.....who's comin' with me???

I'm really not in charge..............

Just in case I thought I had any control over the outcome of this pregnancy I was reminded again today that I am definitely not in charge. I continue to have these delusions that I can do something, think something or will something to be different.....and that is just not the reality we are facing. Today we saw our perinatologist again, that's an obstetrician that manages high risk pregnancies. He really is a great doctor but he continues to tell us things that we just DO NOT want to hear. Our little CJ is hanging there, I can feel her moving around and kicking as I sit here to write this so I know she is a fighter. Today we learned that her growth has slowed dramatically and she is not getting the blood she needs from the placenta to sustain life and grow. Now we've been sent home to wait. I'm on bed rest and we'll go back next week to monitor blood flow again and in the mean time just keep praying that God will restore that blood flow. If I was further along the doctor could monitor Canon in the hospital and deliver her if her heart slowed but he says she can't make outside of the womb yet and so we wait......It's really not easy to have faith during times like these, I have no guarantee that God will give me the outcome I so desperately want. Our pastor mentioned in a sermon the other day that having faith means grabbing on to that skinny tree branch during a fall and not being sure that it can hold your weight. It's true, I'm just hanging on for dear life here, knowing that without faith I have nothing and trusting that God is going to catch me no matter what happens. God gave Canon life and I know He cherishes her, it may be His plan that I get to bring her into this world and it may not be. I just have to have the faith that whatever happens God is going to bring us through it. This is a letter I wrote to Canon last week...............

Dear Canon,

Yesterday I was getting ready for work and I put on a very special necklace Uncle Josh and Auntie Sarah gave me. I had thought the little gold charm hanging from it was a leaf but as I was putting it on I noticed it was a wing, an angel wing. The first 10 weeks of my pregnancy while you were growing in my tummy you had a twin with you. Because of your twin our OB sent us to see a very special doctor that knows all about babies growing in mommy’s tummies. When we saw that doctor he was able to tell right away how special you were going to be and at just 12 weeks he was able to see that there may be a tiny hole in your heart. Sometimes it’s really hard to understand why God gives us things and then takes them away. Sometimes you think you got something extra to redeem something lost, only to have the extra thing taken away also. Canon, trusting God, loving God and having faith do not preclude you from pain or suffering but what it will do is give you the strength, love and HOPE to move beyond loss and pain. That’s what God has given me. Every trial I’ve faced has developed faith and perseverance that is unexplainable and in the face of many challenges I find myself feeling joy I can’t explain and I know that only comes from God because it can’t possibly come from my heart. Daddy and I are really excited to meet you, we can’t wait to be your parents. Love, Mom