I am actually oddly calm. So someone must be praying for me. If you would pray for sweet Finley and her tests on Thursday, here is my specific list of petitions and requests.
1. Healthy kidneys. No signs of Wilm’s tumor or any other kidney abnormalities,
2. Normal reproductive system for a female.
3. No signs of reherniation and an intact gortex patch repair.
4. Healthy bile duct and no evidence of a cholodochal cyst. (Let’s just say we ask for her to be completely healthy and have normal results on all her tests!)
5. For peace and calm for Finley (and her parents) and that God would continued to be glorified in her and our lives.
There is a part of me that feels calm because I think God already answered these things when we prayed for her health over 3 years ago as she was growing inside me. But, since God asks us to bring all our worries and petitions to him – these would be considered worries – so bringing them right back. I would say my natural state would be worry if I were left to my own devices.
Tomorrow we meet with the Geneticist. I will most likely post again soon if he has anything interesting or concerning to add to the mix. Mostly, he will be the point person here on the west coast to manage the tests and monitoring of the new list of “things to watch out for.”
People always ask if Finley is ok now. It’s such a hard question to answer. Yes, she is ok today. But she has this long list of things that could still happen. But honestly, don’t we all? There are lots of things that can happen to us tomorrow. Today, this moment, is all we truly can be certain of. Tomorrow, the only thing I am certain of is Jesus. I will keep trusting him to get us through.
When we were first diagnosed I struggled with trying to control what I thought I could. Finding the right surgeon and hospital. Praying specifically for all her organs being crushed inside her. Finding meaning in this new path we were on. Finding meaning and trying to do good led me to the DHREAMS study. I thought if we could participate in CDH research, maybe we could get some information for our family, but more importantly help the greater field of research for the entire CDH community, and that that would comfort me, regardless our outcome. So Jon and I sent in blood samples and the hospital sent samples from Finley while she was in the NICU.
Fast forward 3.5 years. We never heard anything so I just assumed they didn’t find anything within our samples.Until this week. They reached out to schedule a phone call between myself, the study coordinator and Dr. Wendy Chung. She is the lead researcher. Google her. She is a rock star. I knew if she was on the call, they had found something.
I may relay this information incorrectly. So forgive me. The way I understood it, Finley has an abnormal WT1 gene. Jon and I don’t have this abnormality. This means the change initiated in her. We didn’t pass this on. They don’t know why the genetic change happened. Could have happened when the sperm and egg met, or early in her formation. This gene known to be responsible to diaphragm development, heart, and kidney and a list of other things. She could have also had congenital heart disease, but she did not. She may develop a Wills Tumor. They need to confirm the WT1 gene, which involves us sending in a mouth swab from Finley. Wait 4 weeks. Once confirmed, they will start to do annual ultrasounds to watch her kidneys. One blessing about her ‘not’ choledochal cyst, is that I am pretty sure they have already looked at her kidneys a few times and I have comfort in knowing that I don’t think she has any issues… yet. So add another maybe to add to the long list of things that Finley ‘could’ have. I’m not overwhelmingly stressed about that one. We have been dealing with a long list of maybes that haven’t come to fruition for a while. God created Finley. He has a plan for her. He has answered so many prayers for her, has worked miracles in her body. I can give him this latest worry.
What hurts my heart the most is the news that Finley now has a 50% chance of having a baby with CDH herself.
Now before I return to a place of, yes, remember what I just write about God being bigger? About giving my worry? About him having answered so many prayers for her already? First I mourn a little. I always assumed Finley just had a 1% chance of having a CDH baby. I have had time to process that list of things that ‘could’ happen. Her having a CDH baby was not on that list for me. Her having to decide to seek genetic help to ensure her baby does not have CDH was not on that list. I hate that she will have to make this decision someday (a long ways down the road). If you know me at all, you know I can jump FAR ahead of things – so me worrying about Finley’s future baby NOW, is completely within my wheelhouse. So right now I am processing this WT1 gene – which I am calling the WTF gene in my head.
But here’s the wonderful part – I can give this to God. Like everything else. I rest assured in the comfort that he’s got this. He has a plan. And I am to remember Phillipians 4:4-7
“4 Rejoice in the Lord always. I will say it again: Rejoice!5 Let your gentleness be evident to all. The Lord is near.6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
This news hurts my heart. This is truth. BUT – there is something more powerful than statistics and probability and worry. Finley is ALIVE. Finley is THRIVING. Statistics could not have predicted her doing as well as she is today. There was a day when they were preparing me of the very real possibility that she was dying. But God shielded me from even hearing that information as my friend Lisa walked away heart broken hearing the same information. And she made a miraculous turn around. She is such a special little human that God has even bigger things in store for. So I will take comfort in those truths. My heart hurts – but I know God love Finley even more than I do. So I will present my worries and fears to him and rest in his comfort. Another side note and positive thought: I am even more motivated to raise money for CDH research than before.
Please join me in praying that Finley won’t develop the Wills Tumor and for peace as we process this new information.
Anyone else in my CDH community been told that their child’s CDH was caused by the WT1 gene?
I did not lose any sleep leading up to Finley’s appointment. I did not lie in bed worrying. I had peace. That, my friends… is prayer. Thank you.
Finley went in for her MRCP and X-Ray on the 2nd and did great. I knew before we left the hospital that her X-Ray looked great and no evidence of reherniation. (Cheers of happiness). We were told we’d get a call on Monday to discuss the MRCP. Monday passed. I called Tuesday afternoon – I was trying to exercise patience. I was told Wednesday afternoon. I called this morning. Getting a pattern? It was frustrating, but I tried to remember there are much sicker kids that are pulling them in many different directions.The nurse relayed that the doctor didn’t think it was a cyst, but she would call and talk with me later. I was happy, but still had questions. We finally spoke late in the afternoon and wow. I am still spinning. She actually discussed the case in their Wednesday meeting and the whole panel of doctors was ‘unimpressed’ with the size of her bile duct. I am going to side track for a minute. Unimpressed? What funny terms doctors use. Personally, I am pretty impressed by all things Finley. But anyway, I digress. She said that even after conferring with the radiologist again, Finley’s bile duct is at the upper limit for a child her age. Did you catch that? Upper limit. That’s the upper limit for normal. She is still within a normal range, just at the upper end. She went on to state that choledochal cysts are usually MUCH larger than what they are seeing with Finley’s bile duct. So I asked the questions that have been on my mind.. 1. Could her bile duct have been stretched by the bile obstruction in Oct of 2010.
She said yes. That is actually exactly what she thinks is the reason for Finley’s larger than usual bile duct and that it will actually all work out and become normal as she grows.
I asked if the bile blockage/obstruction.. sludgey bile was caused by the TPN and she said yes. So, as long as Finley doesn’t go on TPN again, that should not happen again.
If you went back to October 2010, you’d know that this pretty much is in line with what Dr Bliss thought. He didn’t think it was a CC afterall. It was Dr K, when he took over our case that took us by surprising saying he thought she still had a cyst after I subscribed to the miraculous healing theory. Though I didn’t agree with him.. he made me nervous with this idea looming out there. I think had I been on board, he would have operated on her and as the doctor said today, she is pretty sure if she operated, she would be taking out a perfectly healthy bile duct. This just reinforces to me that mamas need to trust their instincts. If you have 2 differing doctors opinions, make sure you get more opinions and trust yours too!
I cried many tears of sheer relief this afternoon. Just knowing that this doctor believed what I have been hoping, praying for – just is the best feeling in the world. Elated doesn’t even describe it accurately. I am so happy that lightening didn’t strike my baby twice. I know in my soul that Finley doesn’t have a Choledochal Cyst. Either she was healed, or it was never one to begin with. I know this is true.
So we don’t have to go back for a year.. She said we could go back in 6 months for my piece of mind, to which I said, I don’t need it. Finley will be happier with one year. Why subject her to tests just to ease my mind? If she was behaving weird, that’s one thing – but, just for me? No. She said down the road we’ll even push to 2 years and once it is in fully in normal range, they won’t need to monitor it.
Thank you for praying for Finley. Words don’t even convey the true extent of our gratitude. Your prayers mean so much. Thank you for loving our family. Thank you God for answered prayers.
23 months already? Where does the time go? In 4 short weeks Finley will turn 2 years old. Things continue to go great with her health. She remains reflux-free and is not taking any medications except for vitamins. We are still nursing and she isn’t showing any signs of dropping any feeds.. I keep hoping it will be a natural, baby-led weaning – but I guess we’ll just take it one month at a time. I am just so thankful that I am/was able to breastfeed her, and just love that closeness with her. I also think it has to be one of the contributing factors to why she has been so healthy.. I think in these 2 years she has only had 2 very mild colds so far.
Developmentally she also continues to be right on track and even ahead in some areas. She is really starting to put sentences together and it just cracks me up. I still look at her like my ‘baby’ and when your baby gives you an order, “you read now please.” It’s just funny. She will also go up to Rowan and hug her and say, “I love you, Rowey” or now she is even starting to say Rowan. It just melts my heart to see them give each other loves and say I love you to one another. I think as a parent, there is something so special to witness those loving interactions between siblings (between fighting over toys, and clothes, and who is in who’s room – seriously, already???) It is just so amazing to see their love for one another already. Rowan is very protective of Finley and really does look out for her. Finley is obsessed with Rowan and always wants to be around her and follows her like a puppy. The first thing she asks for in the morning is “Ro-ro.” Of course, sometimes Rowan likes it – and sometimes she pushes her out of her room and says, ‘stay out Finley, I don’t want you to break any of my stuff.’ The turf wars begin at an early age, don’t they?
She is small- we haven’t been the the Ped for a while, so I am hopeful she is staying in her curve of 10%. As she gets taller, she is really looking thin to me, but I think that is just going to be her frame/body. I try to stuff as many calories in her as I can…but as many of you know – many toddlers are much too ‘busy’ to be bothered to eat large meals.
Also August 12th will be a very special day because it will be the 1st inaugural Ladybug Run for CDH Awareness- and our first major fundraising effort for the Ladybug CDH Foundation. We have already been contacted by the Pediatric Surgery office with a potential need that we could assist with beyond the research project – so we are really hoping to raise some funds! We already have a great headcount and are hoping by race day we will hit our 200 adult target.. we are already over halfway there and most people don’t sign up until the final weeks before a race. Next year we will be able to add the fundraising element to the Ladybug Race, so people will be able to raise money (like the March of Dimes model) for our charity… but for this year there is also another amazing, new run that people will be able to direct funds to the Ladybug Foundation through called Cause and Event. My friend Amy is putting this event together and she is one amazing woman and will be in my list below to pray for, as she just had a double mastectomy yesterday – but is 100% cancer free today! Please do help us advertise (both events) by posting on Facebook, sending emails, Twitter, whatever it is you are comfortable with. We are really hoping to see lots of other CDH families there as well. We will be doing a Ladybug release to honor the Angels, and will have bibs that people can write who they are walking/running in honor and/or celebration of… It’s going to be a powerful day. Here is the link again. http://www.reasontorun.com/races/ladybug.html If you are local, please join us and either walk/run or volunteer! After planning and thinking about this event for so long, I can’t believe that the day is coming up so soon. To see all the pieces come together has been nothing short of being led by God. There is no way I could have put this race together if it wasn’t his will.. and that just gives me goosebumps. I am very excited to see where this all takes us and how we are able to reach out and help others.
We will also be participating in a Tree U-Cut fundraiser around the holidays with Parson Landing Christmas Tree Farm, where they will be giving us the proceeds of half of each tree cut if people bring in a flyer. (We will be posting this here, on Facebook, and have some flyers with us on Race Day). Each year this farm partners with a charity and this year we have been chosen. We are very honored by this.
Well, it has been 2 hours and I don’t think Finley is going to nap today. She has enjoyed taking off her sleep sack, playing with her toys and throwing things out of her crib. I guess it’s time to go play….
* There has been another change with the surgeons at the office Finley is seen at – trying to decide if we will follow Dr K up to OHSU, or see one of the 2 other doctors Emanuel. Praying for guidance as to who will be the best doctor to watch over her care. Since Finley will need another MRCP to check on the bile duct (still praying it is NOT a choledochal cyst!!) in October, I will be requesting they just do her diaphragm X-Ray at the same time since it will only be about a month later from when she is due to be seen for her CDH. So we will need to decide by October.
*Angel Samuel’s Daddy needs all the prayers he can get right now.. http://nineteen-days.com/2012/07/13/please-pray-if-you-can/
* Pray for Amy as she recovers and that she will not need chemo/radiation.
*CDH babies Bonnie, Oliver, Parker, Jordan, and Laila all fighting so hard. Strength for their parents. Big praise that Killian just went home… Mr. 2%!! He is more proof that there is ALWAYS hope.
Finley had a check up last week with her Pediatric Surgeon, Dr K last week since she actually hadn’t been seen in clinic since August. I was happy to find out that they probably won’t be doing the as frequent ultrasounds on her bile duct region and most likely just wait until next October to do another MRI/MRCP to check in to see if her common bile duct has decided to finally truly look at a Choledochal cyst or (what I am praying for) look normal. Her last X-Ray looked normal, and I am not sure when she is due for another chest X-Ray but as she is nearing 2 – I think they will eventually just be checking for reherniation on an annual basis. As much as I love everyone at Emanuel, I am happy to see less of them.
Finley is talking/babbling up a storm and is saying more words every day. I just love this stage. Now that she is walking, she and big sister Rowan are getting into more altercations over toys and I am trying to figure out some fair rules… a friend mentioned the rule that toys in common living areas are for sharing, but toys in bedrooms can be deemed “off-limits.” So we are trying that now. For all the fighting over toys, Rowan does show so much love to her sister and it just makes my heart swell. She is always telling “Finney” how much she loves her, and wants to hold/hug/squeeze/smoosh/lift her. Four year olds have no idea of their strength so I have to rush in and save Finley frequently.
The other big news is that the website went live last night for registration for Ladybug Run! I am so excited that this is becoming a reality. We have established the Ladybug CDH Foundation which will funnel the funds to research; Dr K is about to start a very cool research study which I won’t go into detail about here since I don’t know if it’s ok to talk about yet; and to help CDH families in Oregon. I hope you all will support us by either walking or running (5K and a 10k) or volunteering. It will take a massive effort to make this happen and I will need every one of you!! Also, for non-local friends wanting to support – I am hoping to have my tax-deductible 501c3 status finalized soon, so donations will be tax deductible.
For now – please help us get the word out about the race by Facebooking, Tweeting, and recruiting friends to register! If you know of any businesses that would like to sponsor, we definitely need sponsors. Right now my biggest needs are getting more sponsors, the T-shirts – both getting product and the screen printing, and finding a printer that I can print some flyers/postcards to leave at businesses for either a cheap rate, or in trade for sponsorship (preferable). I am so lucky that I have a group of amazing women that have volunteered to be my race committee and are helping plan this event because I could never do this without them.
Giddy is the word that best describes how I have been feeling since I got the call on Tuesday that Finley would not be needing immediate surgery. Giddy. Euphoric. Joyous. I have just held Finley in my arms and gazed into her sweet face and cried happy tears and yelled THANK YOU to God more than once. What an amazing answer to prayer.
The results were inconclusive. Her common bile duct is slightly larger than normal, but not as large as it should be to clearly be a choledochal cyst. So they are just going to continue to watch it. The Nurse said that probably wasn’t entirely the news I was hoping for and I said – it was perfect. I can wait forever if it means Finley doesn’t have to have another surgery. God is revealing himself in the waiting.
Thank you for praying for Finley… we are so blessed by your prayers and I hope you are as blown away as I am by the fruit of those prayers. Wow. Giddy.
Thank you LORD!! We are still in a “gray zone” with her potential choledochal cyst – but it is not showing classic representation and is not as large as they usually are- which means they will continue to follow it. They just aren’t sure one way or the other what is going on with her CBD. It is larger than normal – but not large enough to classify as a CC. I am happy to stay in a waiting, grey zone if it means no surgery for Miss Finley right now.
Next ultrasound in 6 months – another MRCP in 1 year. Yes, that means no surgery this winter as previously mentioned!!! I am soooo thankful and happy right now. Thank you for ALL your prayers.