Fifi da Bomb….

Finley has recently discovered that she can ‘google’ herself and has found articles, photos and this blog. It is crazy to be at this point in our journey, 10 years plus down the road where she is now reading about herself and commenting that her blog author had gotten lazy.

We had labs and clinic last week and she asked me to write an update to her blog. Finley is still followed pretty closely due to two abnormalities in her anatomy. The bile duct that remains slightly outside of normal range, which is something they just want to watch in case it were to start to grow. It has remained stable for 10 years now, so this is not something that worries me. Then there is a clot in her IVC. I try not to think about that one too much. It is mobile, but firmly attached inside her vein on one side, but moves like a valve. But there are no valves in your IVC, so..there’s that. Hematology has been brought in a few times to consult and this time they even asked the Vascular doctors to weigh in, and they are not concerned. It has remained unchanged for 6+ years, so they do not believe there is a risk of it dislodging. So, I put this in the category of things I should not think about too much and just pray that God will keep that flappy little clot in place firmly forever.

If I’ve learned one thing over the past decade, it’s that I’m not in control. There is a list of things that could always happen – but usually it’s the things not even on your radar that smack you in the face. So, it’s best to just open your hands and release it all to a God that is in control. 10 years ago today, we were back in the hospital because Finley had reherniated. 12.28.10 I didn’t see that coming. Everything seemed fine. We had just celebrated our first Christmas as a family of 4 and things were good. Then the morning of 12/29, SMACK.

But, God had us.

That is the story again and again.

So in the midst of a worldwide pandemic, we do what we can to stay healthy and safe. The things that are within my control, I will do. I will be careful. It’s pretty similar to how we lived the first two years of her life. We limited our circle, we didn’t go out much, and were very careful about germs. But I will not live in fear. Just doing what I can to keep us safe, and the rest is up to God.

Credit: Crystal Pettit Photography

Finley with big sister Ro
Credit: Crystal Pettit Photography

Finley is a happy, healthy 10 year old. She loves gymnastics. We opted to do official homeschooling this year with SonLight curriculum, and all things considered, it’s been a great fit. The blessing of this year has been more time together. I will remain ever thankful for the gift of both my daughters. Even when they are driving me bonkers.

Finley wanted to say a few words this time, I will let her close…

FINLEY: hello folks. I’m Finley, but I go by fifi da bomb in the house. (Yes- that is her self appointed nickname) I’m doing great these days. Yepperdoodles. Buh bye!!

The gift of the reminder

“After Finley came home, even though God had answered my prayers of letting us bring her home. I still struggled with fears. Fear that something would still happen with to her. I was so thankful for what God had done – I was afraid I would still lose her. With Finley’s condition there has been a list of complications, things that could still happen, things I could worry about. So I continued to give God my fears – over and over again. 

I’ve come to see my anxiety as a reminder. Like the thorn in Paul’s side – it reminds me of my weakness and I turn to God. I am not in control.”

I spoke these words this past weekend where I had the honor of preaching a sermon on prayer at our church.

There has always been a list of things that could go wrong with Finley – some more at the forefront than others… but Finley has always had ‘something’ they’ve needed to watch.  These somethings could be things we could worry about… a slightly enlarged bile duct… the aftermath of the “it’s a choledochal cyst / oh, wait no, it’s not” almost surgery when she was 3 months old… which has been watched ever since.. and her clot/artifact in her IVC (inferior vena cava). This clot or artifact as it’s been called has been there since she came home from the NICU. I remember this because hearing there was something that could be a clot in your baby’s major vein near her heart is quite unsettling. But they told me it could be artifact, and not to worry about it. In fact, they were so not worried about it that Cardiology discharged us from follow up. It’s been mentioned over the years now and then, but since the excitement of 2016, no one had brought it up. Until today.

The Ultrasound tech noticed it and took a lot of pictures. Even to my untrained eye – I noticed it. And I remembered that it has been cast into the – we don’t need to worry category before. The Radiologist made her take extra photos and off to Clinic we went..

First, her bile duct is smaller this time. Yay! He still thinks it’s fine – but will scan it again in a year.

Then he brought up the clot. He wasn’t on her case as a baby – I let him know that it’s been there since the NICU. I learned that apparently PICC lines and arterial lines can cause these. As the mama and the keeper of all the medical info about one Finley Dooley – these are the things I do remember. I remember all of it. I may not remember a whole lot of other things – but all the medical records are stored in my active memory.

He wants to have Hematology/Oncology take a second look.

For a half a second worry tried to take a foothold. But then I went back and said no. No, I will not worry about this. I will just be thankful for doctors that continue to be so diligent in her care that they want ensure they are doing all the right things. If this is concerning, they will put her on blood thinners.

As I talked to Jon, we laughed about the fact that things are NEVER straight forward inside Finley’s body. We have yet to have a doctors appointment where there wasn’t something to watch. Something to pray for. It is the gift of the reminder to not take any of this for granted. There are always things to watch – and many times we aren’t watching for them. I live in an complete lack of control – and Finley is my reminder that even though I try to fool myself with thoughts of being in control – I’m not. And that’s ok.

Living life in submission to the one that is.

Finley doesn’t just keep us on our toes- she keeps us on our knees. 🙂

12 months later…

I can’t believe it’s been almost a year since Finley’s last surgery. I hope it’s her last surgery, but I don’t know that for sure. She is at a higher risk for reoccurance since they took out the Gortex and then closed her only with her own tissue (SUCH A HUGE PRAISE!), but each day we get closer to 2 years post-surgery, brings us closer that risk dropping monumentally. Plus, I don’t give much stock to statistics. Every single thing I have worried about as potential outcomes from CDH actually never happened, and the thing that did, came so far out from left field it wasn’t even on my radar. The Gortex patch becoming infected so many years post-surgery doesn’t happen much – It happens days/weeks/months post surgery. But 6+ years? I have yet to find another case.

So how is Finley doing? I get asked this question frequently. She is a perfectly happy and healthy 7 year old. She loves to dance, do the bars at recess, read, play elaborate games of pretend in her room, bonus room, living room (let’s face it – she pretty much takes over the entire house). The scar on her stomach has faced and is a beautiful straight line which to me signifies her warrior status. There is a scar on her back that is round and concave. It is where the seeping wound resided. After they excised it post surgery and stitched it up, it scared us post surgery as it looked like it was going to come back, but then it healed and faded, but it very noticeable. The surgeon said that she could opt for plastic surgery down the road if it bothers her. Currently, the idea of another procedure is that last thing on Finley’s mind. I hope she keeps it. Our scars tell a story.  All of us have scars, some visible, some invisible. I love every bit of Finley, especially the scars. She has been through so much in her 7 years of life and the scars tell a tiny bit of that story. They are beautiful. They are badge of the warrior who has been through battle. When we make it through the battles, we usually do not come out unmarred. It changes us. It marks us. It makes us stronger in some areas, weaker in others, and more sensitive, or raw in spots. It pricks us with pain at odd times and reminds us of it’s presence. With enough time, those sensations fade and all that remains is that scar. An ever present reminder of what we’ve been through. Last year, was a hard year for Finley, but to see the faith that was born from it – her trust in the Lord is real. I am thankful for that.

I have said before that just looking at Finley, is for me, a monument of God’s answered prayers. I am so thankful for how God has already worked in her life, is working in her life, and also how he has worked in my life.  I love that I prayed for God to heal her for 6+ months, but he had something even better in mind. Through surgery they were able to remove all the organs that were fused to the patch, take out 98% the Gortex (everything they could see that wasn’t absorbed into scar tissue), and then place some of her fat tissue under her diaphragm to prevent the organs from adhering again. She hasn’t had any complications and so far the X-rays have looked good. They will be following closely every six months for another year, and then we will be able to go longer without X-rays.

Thank you for continuing to pray for her and follow her story… we are so thankful for the village of people that love us and support us in prayer.

A labor of love…

I was busy on Facebook this morning trying to recruit volunteers for the race and I typed this plea; ”

“This race is a labor of love for our family.. we need lots of volunteers to make it happen – can you help? Lots of things you can do even with a kiddo! http://signup.com/go/M3xRbL

 

Please share!

 

100% of the money raised goes to helping families in the NICU in the NW, and towards research. 100%. We are entirely volunteer led and run.

 

THANK YOU!”

As I sat here thinking about those words, I thought about how Ladybug Run is a labor of love not just for our family, but for those that come along side and help us – year after year.. without the enticement of shirts, free entries, anything – but just for the feels, and the fact that they know that they are doing stuff that MATTERS. It matters to the CDH families we visit in the NICU who receive care packages with items from Breath of Hope and Ladybug CDH Foundation and gift cards that are purchased from the money raised at the race and through out the year. It matters because we have been able to donate over $80,000 to research to improve outcomes for kids the CDH and PH. It matters to the families who have lost their children who get to spend a day honoring, remembering, and celebrating their child’s life. It matters to the families whose child fought for days, weeks, months – and continues the battle even once they get released from the hospital.

This race is so much more than a run. Sure, people throw on their running shoes and run and walk 1-6.2 miles… but this race is so much more.

We need over 50+ people to cheer and direct traffic and protect our participants and cheer them on! We need face painters, and people to hand out medals, to cover bag check, and help with hospitality/food.. If you are running or walking, you can help stuff swag bags, help at packet pick up, or race day set up or registration.. we’ve got lots of needs. If you have any time/bandwidth, your help is much appreciated.

SIGN UP HERE TO HELP: http://signup.com/go/M3xRbL

(please share with friends/family and kind strangers.)

How is Finley?

Tomorrow will make it 2 weeks since Finley’s surgery. That doesn’t seem possible. She has been at school every day this week, each day she walks straighter and seems almost back to her normal self.

How is Finley? She’s doing amazing. I mean, she’s at school.. she’s playing, eating good (by Finley standards), she’s not on any pain meds, she really is doing amazingly well. She finished her 7 day course of the antibiotic for the incision infection on her stomach, and we have one more week of the other 2 antibiotics. The front incision looks a lot better, but still has some redness. The plan is to see if the redness gets worse off antibiotics, or keeps improving. The waiting game with infections hasn’t gone well for us in the past, so I am nervous that there could still be something lurking. The last 7+ months have been a roller coaster of waiting and the infection returning, so it’s hard to believe it’s all gone.  But, maybe, just maybe, this time it is…

They pulled the final drain that was in her back incision today. It hasn’t been draining much of anything since we’ve come home, so that’s a good sign. Dr Jafri was happy with how everything looked, and wants us back next week for one more follow up.

So we continue to cover sweet Finley in prayers. That there is no more infection in her body. That she continues to heal and recover from surgery and does not have any more infections to combat. I can’t wait for that day- we may have to throw a party!

 

 

Full circle

We’ve been home over 24 hours and Finley is doing great. She hasn’t wanted to take any pain meds- but I finally just made her take one dose because I could tell she was in pain even when she kept saying her pain level is zero. Stubborn, warrior girl. Otherwise, things seems to continue to progressing in the right direction as she continues her business of healing.

Over six and a half years ago, we started this journey and through the many blessings we received, the Lord impressed upon us to do more and walk with other families in similar places and show them the same love that was given to us. To be on the receiving end of such love and blessing AGAIN, has been such a powerful reminder that there is no gesture that is small. A text, email, a Facebook encouragement, a cup of coffee, a meal, snacks, it all means so much. Thank you to everyone that has just showered our family with prayers, love, and tangible blessings. I can’t find Finley under the mountain of stuffed animals she has received. Rowan commented on how loved she felt, even though she missed us. That was such an answer to prayer because I didn’t want her to feel alone and forgotten. She had so much fun during a difficult time, which makes my heart so happy.

The nurses commented several times on our amazing village of support. You truly are the hands and feet of Jesus when you bring Kombucha to the hospital for Finley at 9:00pm after I posted a Facebook request!

So again, thank you to everyone who has supported and loved on our family, and continues to do so. We love and appreciate you all so much! 

Hidden party guest

Yesterday a new bacteria was found from the cultures taken from the patch. It took several days to get it to grow- and it has a name I can’t remember. It is resistant to the antibiotics we have been on, and it did not show up in any of the previous cultures. Infectious Diseases switched up our antibiotic regime, and we will be done in 14 days! There is an end in sight! 

Yesterday was a big day with lots of steps forward. Finley left the room, went on a wagon ride, walked around and ate solid food! 

In fact, she did so good- that they decided she could go home today and finish her healing from the comfort of our home.  I am writing this update from the comfort of our couch. The timing couldn’t have been more perfect. Last night, I think Finley had reached her limit of all of this and had a meltdown and refused to take her medicines. It took a long time, many tears (hers and mine), mom being asked to go take a walk, and finally Finley cooperated as not to get anything more in her IV. 

She assisted in the removal of all 3 of her IV access points. She pulled off all the tape and  the lead stickers. Have I mentioned what badass she is? Julie removed her main drain this morning and we return next week for the red rubber band drain to be removed from her back wound excision.

 She is currently playing in her room with her bounty of booty because we have an  amazing community that has blessed our socks off.  

At some point we will ask her to clean her room… but not today. 

More healing to be done, praying for every bit of infection to be gone and never to return. Finley needs to keep up eating and drinking fluids (which is hard even on good days) and take her stockpile of meds and just keep up the good work! 

Rest

Yesterday was a difficult day, but a day where Finley made some excellent progress forward. 

Sitting in a chair may not seem like a big deal to most, but when you have several incisions and drain openings- it was a HUGE step in the right direction! She sat in the chair for over an hour, which really helped improve her lungs too. 

They also ordered her to move more and use the bedside potty, which she accomplished 6x! 

They ordered an X-Ray because she kept complaining about lower abdominal pain and her belly was very firm. She had quite a bit of air and stool in there, so they ordered meds to help move things along. We had success quickly and that really helped her feel much better! 

She did excellent over the night and was able to rest. She only woke twice and even asked to do her breathing exercises before going back to sleep! Without morphine on board, her sats were much improved and she didn’t need blow support at all! This meant mama had an amazing night of sleep. After six hours of sleep and a shower I feel recharged and reenergized! 

Her epidural was weaned down and taken out this morning- it was getting red and they were worried about infection, so Finley had a unenjoyable morning filled with tape removal and bandage changing- but end result was one less tube in her!

Her front incision is also getting a little red at the edges- so please be praying that we don’t have any new bacteria trying to start a party. 

Yes- that’s solid food you see! For the first time since Wednesday night, Finley got to eat something that wasn’t liquid! She ate half of this delectable treasure and it’s been over an hour and we haven’t had it try to escape.

The hope is to continue to let her eat whatever sounds good (albeit slowly) and we can move to oral pain meds. We also hope to get her moving more and maybe, just maybe, we can get her out of the room today and explore the play area or  even go outside to the garden (gasp). 

There are awful, painful things she HAS to do, so I am careful to try and let her have control over the very few things she can control. She called it torture this morning, and I can’t argue with her. It looks and feels like we are torturing her, even though it is to help her. There is no more agonizing thing for a parent to watch than your child hurt like that and know you have to let them get through this pain, to get to the good on the other side. I see a strong parallel to how God must feel about us. He sees the bigger picture too, and though it hurts him to see us experience these painful things- he knows what good there is for us just on the other side of “the torture.” For that, and so many other things, I am very thankful today. 

Day 2 post surgery

It’s been up and down. Last night had its rough spots. When we have the right mix of pain meds, Benadryl, and friends- she has periods of time where she isn’t in much pain (unless she moves) and is comfortable. Then she will do the things she needs to do to keep her oxygenation up above 90. 

But when the pain breaks through, my poor girl is in high levels of pain and doesn’t want to take deep breaths and her oxygenation drips to 70s and 80s and she doesn’t want to do what we need her to do and it’s a dance to get her back on track. 

This cup directs air at her to give her a little extra help. She hates it, but does not want a nasal canula, so we sneak it at her when she is distracted or asleep. 

Prayers and Goals….

1. Take more liquids by mouth.. she has tolerated the few sips she took yesterday, but doesn’t have much desire yet for more..

2. More coughing and deep breathing. There is a risk she will develop pneumonia if she doesn’t work harder. 

3. Pain. We need the meds to cover the pain and be able to stay on top of her pain so she can move a little and cough and do all the things she needs to do to continue to progress.

4. Continued healing and no complications. No more infection in her body! 

5. For her stomach and bowels to wake up all the way! She wants solid food, but until she drinks more and everything is awake- that isn’t going to happen.

I’m exhausted. Sleeping in 30-90 minute increments is tough! But I really can’t complain because when I look at what Finley is enduring I just wish I could take her pain from her. 

Saturday game plan

Finley had a great night – meaning no huge surprises! Her breathing continues to improve, but we still need her to do the breathing exercises that encourage her lungs to open up and cough (and this is painful for her with the incisions). She is becoming more aware and less groggy… we are having more and more time with her eyes open and glimpses of her normal self slowly emerging. Her body has been through a lot in the last 24 hours but it is progressing really well. 

The plan is to remove her foley today, so we need her to be able to pee without it, or it goes back in. We need her stomach and bowels to wake up. They are going to allow her to try ice chips today when she is ready. She had some Tylenol orally last night which she promptly “returned.”  She has an epidural for pain management right now and may continue to have that until Monday as long as it holds in place. It is the best option for staying on top of the pain, so hopefully we don’t have to remove it early. 

Again, things are moving in the right direction. We are so thankful. 

“Praise God, who did not ignore my prayer or withdraw his unfailing love from me.”

‭‭Psalms‬ ‭66:20‬ ‭NLT‬‬