Finley Anabelle's Blog

Our CDH journey

Finley in the news! August 4, 2016

Filed under: Uncategorized — lizdooley @ 11:14 am

We were very thankful to Sally Showman at Koin News for doing this story about the race and raising CDH Awareness!

Watch the story HERE.

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CDH Awareness Day March 31, 2016

Filed under: Uncategorized — lizdooley @ 6:51 am

“Isn’t it ironic, don’t you think?” 

“Like finding out your baby has CDH, on the actual national awareness day?”

“like rain on your wedding day…”

Ok – I can’t carry a tune and I may be tone deaf.. But I always think of that Alanis Morissette song when I think of how we were diagnosed on CDH Awareness Day on March 31, 2010.

It is not lost on me, any day how completely blessed, lucky, fortunate, (enter a bunch of adjectives) that she is with us six years later. How, in a few minutes she is going to come waddling down the stairs with her crazy bed head and come snuggle with me on the couch. My heart feels like it may burst every time I squeeze her because I know how close we came.

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In honor of this day, I thought I’d share a blog post I wrote for the amazing ladies at For the Joy of It last week. For the Joy of It is a community of women actively chasing after the heart of Christ together. They have a heart for other women and a desire to encourage one another and build each other up. (This is my favorite part) Our community points others to Christ – not by what we say… but by how we live. 

Blog Post here: Sistering…It’s something we can all do 

The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body” (1 Cor 12:12). 
This truth is a foundation for what The Joy of It does as a non-profit here in the Northwest. One of the things we get to do is come alongside and support the existing activity of Christ that’s happening in our communities.
The Joy of It gets to do this thing called “sistering” where we support living out what it is to be the body of Christ with many different functions.
What is “sistering?” As defined by architects and the construction industry, it happens in the building process. A structure is built with a series of beams called joists. A joist is basically a strong, heavy board that supports a floor or ceiling. Sometimes a load is too heavy for the joist and it begins to sag, crack or weaken under the pressure. “Sistering” is where extra boards are added to the right and/or left of the joist to strengthen it. (Continue reading here)…..

Join me in raising CDH Awareness today. Wear turquoise, or a Ladybug Run shirt, post about it on Facebook, register for the Ladybug Run and post why you are running this race with us, tweet about CDH and use the hashtag #cdhawareness or #cdhawarenessday, or do a random act of kindness and spread love, joy and HOPE today.

I’m also going to remember all the precious CDH babies that didn’t make it, and celebrate the ones that did.

 

It’s that time again…. March 14, 2016

Filed under: Uncategorized — lizdooley @ 10:30 am

Finley has an ultrasound scheduled for Friday to take that annual look at her bile duct. As always, I would appreciate prayers for everything to be “of no concern” and for her to have a technician that is able to do the procedure without causing her pain.

For those just coming up to speed on our miracle who are wondering why are we looking at her bile duct? Did she have a CDH? Finley had another abnormality occur shortly after she came home from her first NICU stay. Initially, they thought she had a cholodochal cyst and promptly scheduled surgery.  But, God had other plans. The issue resolved itself and she didn’t need surgery, but it resulted in her bile duct being slightly outside of normal range.. this is something that warrants monitoring because if there is inflammation in the area causing this aberration of size (which we can’t see with MRI or ultrasound) this is a spot that could develop cancer. The laundry list of things that “could” happen to Finley is so long, I have come to a place of great peace that I am not worried about it happening. God is with us every step through prayer and that gives me peace. So thank you for praying for our sweet girl and continuing to do so.

 

Dear Finley, February 2, 2016

Filed under: Uncategorized — lizdooley @ 2:58 pm

 

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I look at you each day and just pinch myself. You are such a gift. You have such a special soul and really touch those you come into contact with. I can’t imagine a world without you in it. I am a different person because of you. Walking in faith, trusting God didn’t come easy to me. God showed up big time and I hope you someday realize the magnitude of prayers offered for you, and how many truly were answered. I could have easily just spent my life grateful and happy – but God whispered something more into my heart. He made me see that we were blessed to BE a blessing to others. It started as a desire to show hope and love, to be there for others as people were to us, and also raise money to help other families through research, and financial support. A few years down the road, another reason came into light. You see, my sweet darling, someday you will be faced with a choice. You carry within you a 50% chance that your babies will have CDH. That knowledge hurt my heart. You will have to decide either to genetically alter your baby’s DNA to ensure against CDH, or roll the dice. I can’t do much for the choices you will have to face down the road, I will love you no matter what you chose. There is one thing, that I can do and that is to work hard with others to raise money for research so that IF you do have a baby diagnosed with CDH, that we’ve done what we can to improve the odds from the science side of things.

I remember those days, weeks, months waiting for you. Walking that journey with a few other mamas who were also expecting their own CDH fighter around the same time. Ultimately, each of us joined one of 2 “clubs.” The outcomes are improving, as the doctors would say, but still far too many mamas lose their babies. It tears me up each time. I know how close we came.

Some days, I wonder why I am planning an auction, or the race again, and then I stop and look at a photo of you and I smile and remember.. it’s for you. It’s for the mama who doesn’t get to hold her baby. It’s for YOUR future babies. How can I NOT do any of this? You inspire me to be so much more – to dream even bigger. I hope I can do the same.

I love you,

Your mama.

 

5 years old. August 25, 2015

Filed under: Uncategorized — lizdooley @ 8:36 am

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Finley just turned 5 years old on the 12th of this month. She is a force. She is so self confident and comfortable in her body. It is not unusual for people to meet her, have a lengthy conversation where she does a lot of talking, and they turn to me and comment about her personality.  The things she says, she shocks me at least once a day. She is such an old soul. God has BIG plans for this one, I can just feel it. She continues to astound. Her last X-Ray in January was clear and her repair is holding strong. She had her last ultrasound in the spring for the not-cholodochal cyst and to check for Wilm’s Tumor (both clear).  Both are now on a once a year schedule to check. At her well child she continues to actually go UP curves and is now in the 32% for weight and 50% for height. At 4 she was 25% and 25%, and at 2 she was 5% for weight and 25% for height. She usually runs or skips as her preferred speed of movement. I fall in love with her more and more every day.  She can be feisty and throws a tantrum with the best of them, but will usually yell at you to “leave her alone” so she can calm herself down. She starts Kindergarten in a few short weeks and though I am so excited for her and am so blown away that she is actually ready at 5, when faced with a HUGE list of all those things that “could happen” with CDH, but I will miss my alone time with her. She is developmentally completely on track and even advanced in some areas.  So many answered prayers. Don’t forget that my wonderful reader.  When I go back to the beginning of this blog and reread my prayers, and the prayers offered up by others I am brought to my knees with gratitude. 5 years ago today, Finley was trialing the conventional vent, and we were praying she would be strong enough for surgery. A few days earlier, a doctor had spoken to me, trying to prepare me that she might not make it. I didn’t hear those words. I just heard that there was a chance and I remember telling him, “there are so many people praying for her, all around the world.” I knew the gates of heaven were being shaken with petitions on her behalf. I don’t understand why some prayers are answered and some are not but I will never take for granted the truth that a miracle was performed for our family. We get to look upon a miracle every day.

If you are a newly diagnosed CDH family- have HOPE. I could never have dared to dream we’d be where we are today. But I had a mustard seed of faith…

Psalm 28:7 NIV

The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.”
 

Results…and relief. August 15, 2014

Filed under: Uncategorized — lizdooley @ 2:05 pm

It took longer than expected to get the results. On Monday I called and spoke with the nurse and she told me that the kidneys looked normal and the bile duct looked the same (still slightly larger than normal – but that is how it’s been now for 4 years -so stable is good). I felt ecstatic. She did mention she still needed to review the images with the doctor – but I didn’t expect to hear anything alarming.

Then after Finley’s birthday party I got an email. She mentioned they was something concerning with Finley’s intestines and an area that may have been collapsed. They wanted to take more images. It could have looked different due to her surgeries and wasn’t emergent – but something we could talk about on Wednesday when we had a doctors appointment. About 5 seconds after looking up what collapsed bowel was – I immediately emailed and requested getting the ultrasound the next day right before our doctors appointment.  Honestly, I felt sick to my stomach. Collapsed bowel could be evidence of a bowel obstruction. So of course I start thinking that maybe her every other day bowel movements are a sign of that and her bird-like eating.. and yes I was spinning myself up. And then I would stop myself and breathe and pray. I went for a run Wednesday morning to clear my head and listened to the Sunday sermon I had missed while we were out of town. Part that really resonated was about remembering what God has already done. As I think about that just in Finley’s life I am so reminded of his faithfulness. So I kept praying all morning long. I prayed for it to be nothing. If it was something – for God to heal her. For her not to require any surgery. 

After a long wait and tortuous ultrasound (the man kept telling Finley it shouldn’t hurt. But it did. Her whimpering and cries of pain just about broke my heart for the millionth time for her.) We went to clinic and met with Nurse Julie. She had to run back down to get the results – but she said it’s ok. Everything in the bowels looks normal. I almost sobbed with relief. The weight of the last week lifted significantly. I am so incredibly thankful that everything is normal… everything is truly AWESOME.🙂 She won’t need to do MRI’s anymore either. They can check the bile duct (annually) and kidneys via ultrasound (mixed bag there since they cause her discomfort) every 6 months. No more general anesthesia. Counting my blessings and praising God. Thank you.

I would also ask for prayers for my Dad. He has HCC liver cancer and has been told he has about one year to live. We just pray for more time, quality of that time – and for my Mom and Dad to feel God’s presence and peace throughout this journey. On September 16th he has an appointment at OHSU to see if they will try Y90 on him – and our hope is that they will. Also prayers for my girls as they are processing that Opa is dying and that we find they right words to help them deal with this too. 

 

He is with you… August 5, 2014

Filed under: Uncategorized — lizdooley @ 4:48 pm

We are home. 

Those words feel very sweet. Finley’s X-Ray went quickly and though we haven’t heard the results, Dr Liz looked at it and after having seen many of her chest X-Rays (both with bowel and other organs up and not) and I felt like it looked good. The Radiologists asked what those clips were and I explained that she was born with CDH and see that healthy looking lung there? After her repair there was about half that there. I love seeing the amazement from medical professionals. Her X-rays look normal – except for those clips. That is so crazy to me. It reminds me the HUGE works God did in Finley’s body and just reaffirms her miracle status to me. 

We killed some time in the garden. Which is always such a flood of memories for me. I took a photo of this bench that I would sit at most mornings and pray during the time we couldn’t be in the NICU from 7-8am. So many prayers said in that spot. And then I think of others who have probably prayed there too.. When it’s hard for me. When worry tries to creep in, I think about all those answered prayers. How Finley truly is miraculous. 

Julie actually just called and her X-Ray did look perfect – Praise God! And her labs were good too and don’t show any abnormality in her kidneys. Just waiting on the MRI now. If her bile duct is still looking the same and stable, then we won’t have to do another MRI and we can switch to ultrasounds (and that will cover both her kidneys and bile duct). Can we get a Hallelujah? Be praying for that. 

During Finley’s MRI, I decided to go and give blood. I have wanted to do this for quite some time, but the timing kept not working out. I am not good at doing nothing and waiting. I need distraction or being in constant prayer. Finley got several bags of life saving blood product, so we know first hand, just how vital and important blood donation is. Today, my blood will help 3 people. If you can donate blood – do it. There is this saying from a sermon that I have probably mentioned before – it may be a mantra for me. What to do while waiting? Get busy doing good. Doing for others keeps the focus off yourself, and your worries and is something tangible you can do. Much more productive than worry. This resonates with me. I am a do-er. It is hardest for me when there is nothing I can do. The 2 people I encountered at the Red Cross were both believers, and I know that wasn’t a coincidence. Both times God reminded me to Trust him, and that he is always with me. 

So now we wait a little longer. But I think the MRI was the piece that was the scariest for me. I am very happy that is done. Thank you for the many prayers, messages, good thoughts. As always, we are so thankful for all of you holding us up.