I have posted this verse before, but it is one that continues to speak to my heart. Psalm 27:14 “Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD.”
We waited 45 minutes to have Finley’s inital diagnosis of CDH confirmed (This was a HUGE blessing).
We waited 5 days for the FISH Amnio results telling us that Finley most likely did not have any other genetic abnormalities.
We waited about 2 weeks for the full amnio results which meant that Finley would have a 50% chance or survival instead of less than 10%.
We waited 5 months for Finley to arrive into this world.
We waited 19 days for her to be strong enough to have her 1st repair surgery. (This was the hardest, scariest waiting).
We waited 30 days to bring her home after her surgery.
We waited 12 hours before her second repair surgery.
We waited 7 days to bring her home again.
We waited 3 days to have have her first choledochal cyst surgery which ended up being cancelled because she stopped being symptomatic and it was no longer clear that that was what she had.
We have waited 12 months watching her “abnormal” bile duct praying for it’s healing.
We have waited 5 days and counting for the results of her MRCP to confirm (or negate) the choledochal cyst diagnosis.
I have waited and seen God do amazing things.
Some days I say I am getting good at waiting. But as many of you may know about me – I am not by nature a patient person. God is working on this in me. I have come to learn the lesson that the reason why God wants us to patiently wait for him, that it is in the waiting that we seek him. We fall to our knees and pray earnestly. We whisper those prayers hourly as we wait. We seek him and we find him in the waiting. When we aren’t waiting for something it is easy to fall in the misconception that we don’t need him to make it through each hour. We forget about our absolute reliance on him. It is in the waiting that we learn to see all the blessings. Each day of waiting for Finley’s birth I felt the blessing of my pregnancy. To feel her inside of me. I focused more on that than the aches and pains and normal complaints because I didn’t know if that was all I was going to get with her. I lived with the gratitude of each day of my pregnancy more so than I did with my first. With my first, I took for granted many things. I will never take health for granted again. Yesterday my children woke up many times through out the night and I was exhausted. But as I nursed Finley at 3am – I thanked God for the fact that I had my baby to wake me up many times throughout the night. This isn’t to say that I will never complain about things ever again.. but I have a perspective – a new set of lenses that I am now seeing my days through. Being thankful in all things. Our prayer warriors have once again went to battle for Finley and I am so thankful for all of you.
I spoke with Dr K late on Friday and he said that the MRCP was unclear and that the “cyst” was iffy. That we may just need to continue to watch it – but he needs to review all the scans (there are hundreds of images) with the Radiologist he trusts on Monday or Tuesday (he has been out the last 2 days). He wouldn’t say for sure, but it is looking like she MAY NOT need to have surgery scheduled for November/December as he had previously estimated. So we are still waiting. But I am also tentatively rejoicing. I am thankful for this unclarity because that means it is not clear that she has a cyst. We continue to pray, with thanksgiving.
Also praying for CDH babies Porter (for him to get to full feeds and be able to go home quickly), Jacob (recovering from his repair surgery), Alex (to get off the vent), and Rowan (for her lungs to grow).
Finley did great this morning and was in and out in about an hour. As of 4:24pm she seems not to be suffering any ill effects of the anesthesia. She took a good 2 hour nap (so much for them saying she would be EXTRA sleepy today and nap more) and seems to be her usual, sweet self. Now we wait for the 48 hours that it takes to get someone to read the scan and give us the results. Don’t even get me started on how that annoys me. 🙂
Thank you for all the messages, prayers, and support.
I know I don’t need to ask again, but please join us in prayer on Monday for Finley’s MRCP. She will be put under anesthesia for the procedure at 8:15AM and I am not allowed in the room with her. The procedure is supposed to last about 90 minutes, and after about 30 minutes recovery we should be able to go home. We should get the results by Wednesday.
Oh Lord, you know it is my hearts desire that it will be clear that she doesn’t have a cyst. Please heal Finley so that there is no abnormality in her bile duct. We ask in Christs name, that she does not have any further health conditions requiring surgical intervention. I know you can do these things – so I am asking in faith. Help me to continue to trust you and bring all things to you. I am so thankful for all the blessings and answered prayers for Finley already. Regardless of Monday’s outcome, it was such a huge blessing that she didn’t have to have surgery last October when she was just 2 1/2 months old. I am so thankful for that. You are my refuge and my strength, you are our rock…we could not make it through any of this without you. Amen.
We continue to wait. To trust. To be thankful in all things…
I also want to share Angel Samuel’s Father’s Blog… Daniel writes so beautifully and is such an amazing testimony to loving and trusting God admist great loss. http://nineteen-days.com/
This is the story about how Finley inspired me to run.
I have wanted to be a runner.. In my twenties I took up running, but was felled by injury and gave it up. I tried again a couple of years later to same result. I had accepted the idea that maybe my body wasn’t meant to be a runner.
While Finley was in the hospital I had a dream about running. It felt so real. I felt the pull again. All around me a bunch of friends started to get more serious about running. I wondered..could I try again? Then I started to fantasize about holding a race in Finley and all the other CDH babies’ honor – to raise money and awareness. Her fight would inspire me to run for her. These lungs in my body that I have taken for granted – something I would never take for granted in her body – would be used. Each breath is such a gift. For all of us. The doctors would always say that her long term prognosis with CDH was excellent with the disclaimer, “but she’ll probably never be an Olympic runner or swimmer.” Maybe she’ll prove them wrong again. Maybe we’ll run a marathon together one day.
I started to run again last Fall. I started with a Couch to 5K program. I was all set to run my first 5K on New Years Day and Finley had other plans with her reherniation and hospitalization. So I ran 3 miles on January 2, 2011 in the neighborhood around the hospital. I ran my first 8K for St Patricks Day, a 10K a few weeks later with Jon pushing both girls in the Double BOB, and yesterday, a little over a year after Finley came home from the NICU, I ran a Half Marathon. Through it all – when it got hard, when it hurt – I would always think about Finley. How she never gave up, and neither would I.
Yesterday was not my best run ever. I had injured myself 10 days before the event, and I wasn’t even sure I was going to be able to finish. I prayed to God that I would be able to finish. Ironically, the injury I was worried about isn’t what bothered me during the run. Around mile 5, my IT Band, which HADN’T been bothering me during the last few weeks of training, flared up. But I kept going. Philippians 4:13 was my mantra (“I can do ALL things through him who gives me strength”). Someone actually ran past me with that verse on the back of their shirt and it got me running again. I also loved the quote on some of the shirts, “The courage to start…the faith to finish.” I ended up walking more than I wanted to – but I have logged some long runs before this day and I know I can run 12+ miles. It was not in the cards for me this day – but I did cross the finish line. I have learned many lessons through my daughters. I am thankful for what each day brings – even if it doesn’t go exactly as planned. I am thankful for this body that I have been given that allowed me to accomplish this goal. Sure, I could be upset that it didn’t go the way I hoped for (more running), but that’s life. Things don’t always go as planned. I crossed the finish line – I accomplished my goal. One year ago running a 5k was my goal- I am thankful for how far I have come. I am reading this book that talks about living Eucharisto (to give thanks). Giving thanks in all situations (1 Thessalonians 5:18)Yesterday was a big day. I ran my first half marathon with some amazing girlfriends – many of them supported and prayed for our family over the last two years. At the finish line waited my wonderful husband and my daughters. I am thankful for all of them.
Finley’s race is going to be held on her second birthday and it’s going to be called The Ladybug Run (after the section of the NICU she was in). We will be raising money for local research at OHSU and/or to help CDH families in the NICU. I will be looking for sponsors, runners/walkers, and volunteers – so please let me know if you want to help out in any way!!
One more week until Finley’s MRCP. Praying with thanksgiving.
I ended up having to call the Surgeon’s office today since my Pediatrician’s office was needing chart notes to send off the Synagis request and they had called multiple times with no result. I brought up the fact that I thought they had forgotten me about scheduling the test, and she checked the notes and apparently they had gone ahead and scheduled the MRCP, just hadn’t called me. She is scheduled for Oct 10th. Please continue to pray with us that either Finley will not require surgery; or if that is not his plan, then he guides us to the right surgeon for a successful surgery and recovery. Trusting in his timing and his plan….
Yesterday was the 1 year anniversary of Finley’s coming home from the hospital day! Was totally reliving that morning again.. I didn’t think we were going to be able to take her home since she hadn’t had a good overnight gain, but thankfully Dr Bliss was doing rounds that day and he trusted us to take care of her. I immediately started crying and gave that man a huge hug. One of many I have given him. After 49 days, we were finally taking our baby home. This will forever be a special day to me. One of many days of thanksgiving.
For your viewing enjoyment – Finley trying to do a somersault…. (sorry that it’s sideways)
Still no word from the Doctor’s office about scheduling Finley’s MRCP. Somehow we have fell through the cracks and I am pretty sure they have forgotten. Each day I am tempted to pick up the phone and call them and say, remember me? You said you wanted to do this test within a month of our last visit. But I don’t pick up the phone. I feel God whispering to me to trust in him and his perfect timing. Since I don’t want her to have this surgery anytime soon I am actually happy about this delay. Each day I pray and imagine her bile duct shrinking – perhaps God just wants more time to work through our prayers. Whatever the case and reason I am trusting in him. I feel at peace with that.
I am praying John 15:7 “7 If you remain in me and my words remain in you, ask whatever you wish, and it will be done for you.” We are asking for God to protect Finley, to heal her body, to remove the cyst. I ask for her not to require any more surgeries – but if that is not his will – then for him to direct us to the right surgeon for this operation and to carry her through a successful surgery and healing of her body.
Otherwise all in good in Finley’s world. She is really working on her practice walking and is a very speedy crawler… and climber. Rowan was never much of a climber. Finley on the other hand…watch out! She particularly likes to climb into the toddler rocking chair, stand up, and jump and rock wildly. Her daredevil ways already manifesting themselves… I am going to have to cover this girl in prayer hourly! We already got our Flu shots, now awaiting approval for year 2 of RSV shots. They may not approve us because she has been “too healthy.” Frustrating- but I am hoping that somehow we will be covered, especially now that we have Rowan in preschool; the cesspool of germs that that is… As we approach cold/flu season – we will be entering a modified lock down of last year. We still need to be cautious, so the general rule of visitation will remain healthy people only and we will probably avoid indoor play places. I am so thankful that Finley hasn’t gotten a single cold yet- praise God for that!! Let’s see how much longer that holds….
So many other CDH babies to pray for right now… Please pray for Zach (a 3 yr old survivor who had another repair and is in critical condition), Levi, Alex (trying to come off ECMO, just had her repair), Nathaniel (just off ECMO), Savannah (in hospital with an infection) and babies on the way Rowan, Brayden, and Jacob. Also cover new Angel mamas of Silas and Warren in comfort. Also, continued prayer for Angel Maddie’s mama.
Romans 9:33 ” The one who trusts in him will never be put to shame.”
Today is the first anniversary of the first time I got to hold Finley. For those of you who followed our story closely, you may also recall that this means today is also the one year anniversary of Finley’s repair surgery. After 19 days Finley was finally strong and stable enough for them to operate. Praise God!! I remember everything about this day.
Look at how far we have come.
Finley climbed up the entire flight of stairs today. She has started trying to stand “hands-free” and is getting more confident each day with attempting to cruise around. Before we know it she will be walking!
So amazingly enough – I am not stressed about the cyst situation. I am taking it one step at a time and right now I am just waiting for them to call and schedule the MRCP. We’ll see what that tells us. Everywhere I turn God is reminding me to trust in him and not worry. The sermon on Sunday at church (which was amazing- anyone struggling with fear/worry – you should listen to this message http://www.ajesuschurch.org/topic?id=855&c=1190#855); the Beth Moore book I picked up and felt led to buy “Believing God”; and the whispers from my heart. It’s going to be ok.
“God does not offer us a way out of the testings of life.He offers us a way through, and that makes all the difference.” –W. T. Purkiser