Where God leads you

We are coming up on the 4 year anniversary of the beginning of our CDH journey. The other day I met a woman who was pregnant with her second child who would be going in for her ultrasound in a few days. I told her I would be praying for her appointment. I didn’t tell her why I  have a new appreciation for the 20 week ultrasound and just how many things I know they are looking at. How a healthy pregnancy is SUCH a miracle in and of itself. How every says they just want a healthy baby – and the complete and utter shock it is when your baby isn’t. I remember my thoughts the day of my 20 week ultrasound and how I was so incredibly excited to learn the gender of our baby. That was my focus. I assumed everything would be fine. I was not worried about birth defects. We had opted against the earlier amnio because we knew it wouldn’t change the course of our decision if we were told the baby had Downs or another birth defect. Looking back at the journey – the highs and the lows – I see God. In so many ways and places.

I am a different person today with a different faith. You see, the person who started this blog was quiet about their faith. I definitely did not lead with it, and I was afraid. I remember the first posts I made where I quoted scripture and boldly asked for prayer – how that was such a step outside my comfort zone. I was afraid of alienating my non-christian friends. And then… as my world was being broken down all around me with the knowledge of this baby that was growing inside me, might not live outside of my body. I stopped caring what others might think. I knew I needed God in a way I had never quite needed him before. Not just to heal and protect my baby – but just to endure each day. I felt like such a mess – yet people always commented on my strength.  I was quick to remind them whatever they saw, whatever strength perceived. That did not come from inside me. That is entirely God. I am still awestruck and at a loss for words that God would do all that he has for me.  Why? When we were given this diagnosis I never gave much thought to why me. Why not me? So many sad, tragic things happen to much better people in this life. Why not me? But more often, since it all happened and I have seen so many babies not make it – I do ask myself – why did Finley make it? Why are we so blessed? I wonder what the plan for her life is and what God intends for her to do still. And I come to the verse, we are blessed to be a blessing. “I will save you that you may become a blessing” (Zech 8:13)  That is what I want with my whole heart. To be able to support and love and offer hope by sharing Finley’s story. By walking with other families the way others walked and supported us.  I don’t think God did this to us.. but I think this is a way that God uses all things for good.

4 years later…

I have a healthy, happy 3 year old. She is such an amazing little human. To see my two daughters play together (and fight) – it is thousand+ answered prayers. Finley had a lung function test back in December and actually did the test correctly (2x! Yes, I am totally bragging on her!) and she had above average lung function for a 3 year old. How could that even be possible? Well, the comparative data pool isn’t huge since many 3 year olds can’t even do this test accurately. The office said they don’t usually do this until they are at least 4 or 5 – but after spending some time with our precocious Finley, they decided she was not average.  How many people prayed for lung tissue for my girl? Just hearing those results was to me a total confirmation of answered prayers.

My faith was lit on fire. I am no longer lukewarm.

I have a CDH family that I am so thankful for. Such amazing people I have met along the way. We are bound together and understand each other in such a powerful way.

Our friends and family and even perfect strangers that prayed and supported us in countless ways. I love you all so much. I will never forget any of it, and it is because of all of you that it inspired me to be the blessing that you all were to us.

How God planted a seed about a race while Finley was in the NICU and how that has grown to a Foundation, a Portland race (now in it’s 3rd year), and next year – a Seattle race. None of these are things are things that feel comfortable to me. But somehow, God has always brought me the people  to make it happen.  I am excited and terrified to see where he leads me next.

Sorry for such a rambling post – just a lot of thoughts that have been going through my head…

Awareness.

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Thank you to everyone who ran, walked, posted comments today…

2 years ago, I was told my baby had a 40% chance of survival. (He was wrong about that number).

I was asked multiple times if I wanted to terminate for medical reasons.

Today, I have a healthy toddler with no health issues,  and with slightly undeveloped lungs.

Reflecting on the past 2 years….and taking time to pray for all the survivors and angels we’ve “met” along the way. Thankful for our CDH family, and the amazing support and encouragement in that community. So many parents giving back and trying to make something good out of it all…you are all so inspiring.

Thankful for amazing friends and family, and strangers who walk this journey with us and cover us with love and prayers.

Thankful for a faithful God who has been there every step.

We are aware.

2012 Virtual Walk/Run for CDH Awareness

March 31, 2012. It is an official Awareness Day for CDH in Oregon and many other states across the United States. If you are reading this – you are probably already aware of CDH. So what can we do that’s tangible on this date? How about plan a run/walk in your area and get a bunch of people together and walk or run with intention. Print out a bib here, make one, or Terri at Raising Healthy CDH Children has made some cool ones too and then wear a sign and get out and walk or run any distance in celebration  or in memory of children with CDH.  Maybe let this be the date that you run or walk your furthest distance, or just take those first steps towards a new goal. Be inspired by these babies that fight so hard.

In Celebration Bibs Here: CDH awareness bib_celebration

In Memory of Bibs Here: CDH awareness bib_memory

(A BIG Thank You to the amazing Laurel Thomas who made these and Kim DiStefano who designed our logo and bugs!)

Portland Run/Walk: Meet us at the Dog Park before Oaks Park to run or walk the Springwater Corridor at 9:00AM – it’s any easy out and back for whatever distance you are feeling that morning.

Be sure to take photos and post on Facebook and/or this blog….I want to see you!

 

And don’t forget to register for Ladybug Run on August 12th! http://www.reasontorun.com/races/ladybugreg.html

A proclamation and a termination….

CDH Awareness Day - now official in Oregon

It is actually quite easy to get a Proclamation in Oregon… You go to the website, you fill out the template, you email it in and/snail mail.. and in our case within a week or so – it was official.  Complete with a fancy  letter with a shiny seal.  Now, I think you must have a valid reason and they wouldn’t approve “Jon XXX Awareness Day” but it was a painless process and I am excited about the awareness we will be able to raise from this little piece of paper.  We need all the awareness and attention brought to this life threatening birth defect so that hopefully it will finally get the research funding it deserves.  I want to see them be able to grow diaphragm for these kiddos in the next 5-10 years so they can stop using Gortex for the repairs.  I would love to find out what causes this defect and if it could be prevented.  There are so many areas of research needed.  If you want to help more go here.

A termination. Well, sort of. Finley met with Early Intervention today to review her annual goals and see where she is at. She met or exceeded all goals and just blew the team away with all the things she is doing/saying, etc. We agreed to make her case ‘inactive’ because there are no areas of concern and really, that has been the case for 6+ months now. She is eligible for services through EI until she is 3, so we want to leave the door cracked in case she does experience some sort of delays down the road (unlikely).  My coordinator has never done this before and I just teared up knowing full well how blessed and fortunate we are.

“There is not the slightest doubt in my mind that the God who started this great work in you will keep at it and bring it to a flourishing finish.” Philippians 1:6 MSG

CDH Awareness Day… one year later

4/1/10 – I am sharing part of my journal entry after getting the news.

“We received devastating news at our ultrasound. After being overjoyed at the news we were having another girl, we found out that she has a congenital defect- a diaphragmatic hernia. Which means her diaphragm didn’t close like it was supposed to and some of her organs are in her chest cavity making it harder for her lungs to grow and could damage her heart…I didn’t sleep well last night. I kept waking up and thinking was that just a bad dream? This can’t be happening to us. But it is.  I am scared. Monday we will know more. It is so surreal trying to live life with this knowledge. I pray God will carry us through this. She is strong. She is tough. She can make it. I have been seeing stats up to 50% survival – so I hold to the faith that our little girl will be a miracle…..”

Finley is SUCH a miracle.  God has been ever present with us in this last year. Why does it always take something like this for us to truly draw close to him?

My first phone call after getting this news was to a dear friend who has been there for us in so many ways and it was her husband that immediately said, ” I think I know the best guy in town for this… I will call him tomorrow.” Within 1 week we had an appointment to meet with Dr Bliss. I am still so thankful for Dr Bliss meeting with us and being such a comfort and giving me even more HOPE. (Thank you Andy) He was just so confident (as surgeons typically are) but also kind and compassionate. (Yes, a proud member of his fan club).

One year ago I got the news that my child “might” not make it. It was brought up a few times that we could medically terminate for this reason up to 26 weeks in Oregon. We felt like 40-50% was still a chance for her survival, a pretty decent one… and it was in God’s hands either way. We didn’t feel like it was our place to intervene… we were on path for a reason, so we would see where it went. I am so thankful for the fact that I have such a healthy happy baby with us today. So thankful. I don’t take either of my children for granted. They are a gift.. each day… even when I want to pull my hair out.

In the past year I have seen many CDH babies not make it. The ones I know about are just a small fraction of the total lost. I have ached and cried for these families that I don’t know, but I grieve their loss with them. 50% of these babies don’t make it. It’s not fair.  I pray for a day that they know why this happens, and can either prevent it, or with advanced in utero therapies- bring up the survival rate to 100% (I aim high in my prayers.)

One year later I am holding a beautiful baby in my arms.  I am now aware of CDH.

Tell just one person about CDH today – make it your status update, twitter it, whatever you do to spread the word.  Thank you to everyone that reposted the story yesterday!!

Also, pray for Clara who is undergoing her repair surgery – TODAY! http://thehardylife.blogspot.com/

Isaiah 40:28

“The LORD is the everlasting God,    the Creator of the ends of the earth. He will not grow tired or weary,    and his understanding no one can fathom. 29 He gives strength to the weary    and increases the power of the weak. 30 Even youths grow tired and weary,    and young men stumble and fall; 31 but those who hope in the LORD    will renew their strength. They will soar on wings like eagles;    they will run and not grow weary,   they will walk and not be faint.”