Not quite….

This update is a little overdue.

Well, it wasn’t ‘just’ viruses as we had hoped.. After my last post, Finley started developing a lump on her back. It was exactly at a spot of one of her surgical repair incisions. I noticed it at bedtime as I set her down and she cried out in pain that her back hurt. I lifted her shirt to see a very noticeable lump. I took some photos and called the nurse advice line. I worried that it had something to do with her spleen. Thankfully, my pediatrician was the one on call that night and he agreed we should have her looked at right away, so off to the ER we went. After many hours (Finley now knowing how Child Life works – kept asking for toys), an IV line started, blood drawn, and a lengthy ultrasound it was determined that this was a pocket of fluid, or fibrous tissue and therefore non emergent. We were sent home with an follow up appointment with the pediatric surgeon as this was probably related to the fluid pocket that was supposed to be bowel…

Two days later back, we got to meet the only Pediatric Surgeon in the practice we didn’t already know. The lump was now redder and causing her great pain. He decided to start her on high dosage antibiotics 3x a day for 1 week. It looked like an infection to them, which didn’t make any sense since you don’t develop “post-surgical” infections six years later. They looked at all the scans and the pocket and this lump lined up, so it seemed the infection was taking the path of least resistance and working it’s way out. Again, it made no logical sense though for the infection to be where it was. But if it walks a like a duck….

It took several days for the lump to improve. In the meantime, it got redder – finally on day four I noticed improvement. We had a follow up appointment on day six and they were satisfied with the response, but still baffled. It is not clear why this happened. We don’t know if this is what was causing the low grade fevers for the past six weeks and pain in the mid section (which is not where the lump was). I like things to make sense and understand why things happen. Finley is on day three with no elevated temperature, of which I am very thankful. We will have follow up blood work in two weeks, and potentially another CT scan to make sure the pocket is gone. There may be a follow up with GI. I am going to continue to pray for all the infection to be gone and not to come back. In faith, I am going to claim healing for Finley and continue to ask for his provision and protection over her. In the hospital when they first found the ‘pocket’ the doctor dismissed infection because he said “she would be sicker.” Part of me wonders, if she wasn’t sicker because God was protecting her. Whatever the case, I am just filled with so much gratitude that we had many eyes on her, and even though this was very scary for me – she is fine. I am so very thankful that we are so close to world class medical care and are covered in prayer by so many. I am also thankful that we have really great insurance.

Finley seems to be back to 100% herself. No more pain and back to normal. She will have a few more weeks before we allow her to resume PE, Gymnastics, and full combat activities to allow her spleen to go back to normal size.

I am still processing the last month. The roller coaster of emotions, the wrestling with fear.. it’s like I have an emotional hangover. I like answers and things to be clear – but I may not get that. I have to be ok with not knowing, and just TRUST (there’s that word again) that she is ok, will be ok… and not fear the unknown lurking inside her body. It’s an on-going lesson for me. Trust in him, and lean not on my own understanding.

Ok, I hear you God. You always had us in your palm.

Proverbs 3:5-6

Trust in the Lord with all your heart,
    and do not lean on your own understanding.
 In all your ways acknowledge him,
    and he will make straight your paths.”

 

Viruses and relief

It all feels so anti-climatic. Which is so truly wonderful. It is nothing serious, and it feels exactly like answered prayers. We are still waiting on the results from the CMV/EBV panel, but what the doctors are currently leaning towards is this… Miss Finley most likely had a virus (like EBV) for the past month that was causing all the strange symptoms. Then she picked up another virus (rhino or entero- which she tested positive for), and that is what was creating the high fever – which looked like her getting “worse.”

So hurray for viruses! They certainly can be nasty and wreak all sorts of havoc.. but I will take them over the scary things that were on the table. I have so much gratitude to be on the other side of the waiting and fear and to be filled with relief. At one point there were concerns after the CT that she had an abscess or infection near her repair site, due to what looked like a pocket of fluid. I am ever so thankful for Dr Krishnaswami for coming in personally to look at her scans, confirm what he suspected with another X-Ray, and then to talk me through everything. He was near certain that the “fluid” was actually part of her bowel/colon. CDH kids always have things that aren’t typical in their anatomy due to their repairs. Finley has a section of bowel wrapped behind or around her spleen, and her spleen is partially adhered to her repair area via scar tissue. It was so comforting to have someone that knew Finley’s case so well to weigh in.

As of today, she is back to bouncing between normal and slightly elevated (100.2).. which makes me feel like we are on the other side of the nasty virus. I am thankful for her strong immune system that is doing really well. Thankful for all the X-Rays and scans that tell us that she is perfectly healthy (except for those viruses). I am thankful for Randall Children’s Hospital and the amazing people there and all our friends that rallied in prayer, and meeting tangible physical needs. It was weird being on the other side again.. being the one getting help, instead of being the help. I so appreciated every cup of coffee, froyo, meals… and all the messages, texts, calls, and encouragement. We felt very loved.

Finley will need to be very careful for the next month due to her enlarged spleen. Any big fall/impact could risk a rupture, so she will be keeping her feet on the ground for a few weeks. We have follow ups in a month to check to make sure her spleen goes back down to normal size and that her CBC levels have normalized.

Here’s hoping I don’t have another update for a long time.. unless it’s to post cute photos of Finley being awesome.

The unknowing place

Unknowing. “A lack of awareness or knowledge.”

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That is the place we are in right now. AKA the waiting place. I’ve been here before. But it doesn’t get any easier. Much of the last week I have been wrestling and fighting my mind. The fear tries to be louder than my faith, than the truth. The lies whisper to my fragile, war torn soul and it whispers the fears that have never left me, but were pushed back.. Muted. I was able to live with them, and push them back.. but they never left me.

 

I recently told a friend that I have accepted fear/anxiety as the thorn in my side. The reminder that I am not all-able and in control. The thing that reminds me that I DO need God – that when those lies crop up, I have to intentionally call it the lie that it is, and pray. Most of the time, it’s not an all consuming task. For a few days this week, I have had little energy for anything else. And then the results of her ultrasound came back. Fear had told me that there was going to be something wrong with her bile duct. Maybe something with her kidneys.. because I had BELIEVED that she was fine.. that I went off high alert and trusted and stopped worrying about those things. The lie SHOUTED that my trust was misplaced. When I heard the doctor say the scans were clear while seated amongst a sea of other parents watching their children do gymnastics – My soul audibly sighed such amazing relief. They were lies. Lies, that I did bring to God and that kept me praying for the better part of the school day for 2 days.. but they were lies. Something shifted then. The pit in my stomach lifted. When I get stressed, my appetite runs for the hills. My fragile, about to burst into tears if someone looked at me with too much compassion, state thickened. It was as if God audibly hugged me.

 

See? I’m here. You got the results quickly. This is not what’s wrong with her.

 

You worried needlessly.

 

We still don’t know what is wrong in her little body, but today I feel stronger. It’s not her bile duct, her CDH repair site, and it’s not Wilm’s tumor. The things I know to fear are off the table.

 

I am so thankful for the multitude of prayers covering us. The reminders that God is in the with us. He will see us to the other side of this, and maybe that’s another miracle where he heals her. Maybe he will use the doctors and we will be able to glorify God in the midst of a storm (If I have a choice here though God, I’d like to order a small gale…). No hurricanes please.

 

I will cling that he has a purpose and plan for Finley’s life.

 

His timing is ALWAYS perfect.

 

He has had his hand on Finley since before the beginning of time and loves her more, which is something that I have a hard time comprehending. My selfish mama heart just knows that I LOVE her absolutely and completely and I want all the days with her. I go to the worst place because I have stood at the cliff of the Shadow of Death. It is a scary place. But I am not alone in this unknowing place…just waiting. Knowing that God does some amazing things in the waiting, though I like to fight him. Apparently, I need lots of reminders that I am not in control. He still has much refining to do in me.

So in the waiting, we pray for complete healing of any infection or inflammation. Praying for her stomach and intestines to be healthy. Waiting and praying for the GI doctor to call and schedule our appointment for sooner and that he won’t find anything serious going on inside of her.

It’s only a tummy ache….

The first time she complained of the stomach pain and had the low-grade fever back in the beginning of October, my mind immediately went to crazy town and thought that is was a bowel obstruction, reherniation, something to do with CDH.. It’s what I do.

But then I looked at the facts and told myself it’s just her body fighting a virus.

Then over the course of the next few weeks, almost once a week I would get a call from the school nurse that Finley was in there complaining of a tummy ache, accompanied by a low elevated temp between 99.0-100.4, occasionally she would mention that her throat hurt, or yesterday, a headache. There was nothing to worry about when she was at home, eating pretty normally (for her), and energy always seemed like her usual self. But when I got the call yesterday from the nurse, I knew it was time to see the doctor. 1 month of this was weird. I just wanted a strep test because I thought maybe she had some strange presentation of strep.

When he suggested a blood work up, urine, and x-rays – I was rattled for a minute, but thankful that he is thorough and doesn’t take risks with my girl due to her history. I asked for strep too, much to Finley’s angst.

I wasn’t scared last night. It was going to be nothing. Rowan and I prayed. Finley and I prayed. I did ask for it to be clear if there was something going on that it would be seen, and then I asked for his hand upon her, continuing to protect and heal her as he has in the past.

I wasn’t really nervous this morning either. I went to Finley’s Chapel and listened to her amazing teacher retell the story of Shadrach, Meshach, and Abednego and about trusting God. It really spoke to my heart. I felt God telling me to trust him in the fire. Reminding me that he was IN the fire with them. He could have kept them from being thrown into the fire, but he didn’t. The story would have a different ending.

Finley’s sed rate is high (38), the doctor told me. He is calling the ped gastro specialists at Randall to talk about next steps. We are still waiting on some of the blood work. My heart started racing. “There is definitely something going on” were his words.

As I am typing this all I can think is that I don’t want to be in the fire again. Who wants to be thrown into a fire? Really? But I am going to hold tight to his promises. He is still good. He loves Finley even more than I do. He is faithful. I can trust him. I cast my worries and fear upon him again.

I will rejoice and have JOY that I live in a place with amazing doctors. That my doctor listened and took this seriously, so even if this is some small GI issue, that it has been caught quickly. We have lots of doctors eyes on this now. I am thankful for a community of people that surround me and pray for Finley and our family. When I am weak – I can put my trust in him. I can ask for prayers off the ledge, and into the arms of a Father who loves me and will be there right with me, every step of the way. I can trust him with my precious girl. I can trust him in the unknowing place.

As another friend put it this morning, this isn’t our first rodeo.. so I remind myself not to worry about tomorrow – but keep trusting that he has us, he has her. He is going before us and along side of us. We appreciate the prayers so much – thank you for standing in the gap.

 

 

CDH Awareness Day

“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….

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.