2 1/2 years old February 18, 2013

Forgive my silence.. As always, the silence just means we are wrapped up in life. The older sister, Rowan is busy in Kindergarten for four hours a day and Finley misses her sister in the mornings, but loves the opportunity to play in big sisters room and touch all the toys she forbids. Finley has been extremely healthy this winter – I think she had a tiny cold in December for a few days. I praise God every day for her good health especially when the norm for CDH children typically includes multiple stays at Club Med due to RSV, pneumonia and other viruses. I don’t know if the fact that I have continued to nurse has helped her – but I am not stopping until cold/flu season ends.  We do also avoid all public play places and decontaminate the Kindergartner when she comes home…. so it’s life in a modified bubble.

Finley is so vocal and talks very clearly.. I understand about 90% of her two-year old speak and she amazes me every day. No delays at all with her. She is smart, and funny, and so silly. She melts and breaks my heart a hundred ways every day. The latest is when she sings ‘you are my sunshine’ back to me. I am thankful for every minute with her.

We are starting planning for Ladybug Run for CDH Awareness for August 10th, 2013.. this year Finley doesn’t get a race for her birthday… I guess I’ll have to plan something else for her.

Relief, Elation, and Gratitude. Miracles do happen. November 9, 2012

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.

Quick prayer request October 21, 2012

Finley’s MRCP and chest X-Ray are scheduled for 6:30 AM on Wednesday. Please join us in praying for a X-Ray that shows NO signs of reherniation and that her bile duct will be within normal limits and absolutely NOT a Cholodochal cyst.

I am not worried. I feel no anxiety – because I am giving him my worry and trusting him to answer our prayers. My mind is guarded. He has proved this verse true to me countless times.

Sharing one of my favorites from our recent photo session with Michelle…

UPDATE 10/24: Got a call 10 minutes before we were going to leave the house that the department had some sort of emergency (my guess is the Tech called in sick) and they needed to reschedule. We are now set for first thing Friday, November 2.. Keep those prayers coming please. So frustrated, but trying to remember all in God’s perfect timing.

Phil 4:6-7 “ Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Miss Finley-bear at the Track….

Photo Caption

War and its aftermath September 28, 2012

I have never been to war in the sense of being on the battlefield of military war…but I feel like have been in a war while Finley fought for her life in the NICU.

I had this epiphany on Friday morning as Finley had a check up with the pediatric surgery office and we met her new Surgeon. Always just being in the waiting room brings back a flood of memories. On this day, for some reason it felt more raw than usual. I was watching Finley walk around the waiting room, picking up toys, going up to other children and I just fought the over whelming urge to cry. They were happy tears – tears of relief – tears of thankfulness.  Most days I feel like my shield is thick.. that I can talk about things without the tears coming, but other times, for no reason that I can understand, the tears come very easily and it may just take a mere mention of those scary NICU days to bring them back. I think I have mentioned before that some parents experience PTSD after being in the hospital and thought I don’t think I have that.. I do have times when I feel the scars of that trauma. Sometimes it feels silly to even mention, because I feel guilty for even being traumatized since my child came home, and has been so amazingly healthy.. but that guilt.. we’ve already talked about how that’s not productive.  But I digress.

After the appointment we went to say hello to one of her primary NICU nurses.  While waiting in the office, I had been thinking about Dr Bliss and the nurses that walked thus journey with us and how strangely bonded I feel to them. I know other CDH parents feel the same. We become Facebook and real friends with our NICU nurses. It struck me that it is probably like having been to war with someone. These people were with us during the hardest days if our lives…as we lived at our child’s bedside holding vigil, not knowing what the future held. These amazing people called NICU nurses, not only take care of our precious children and many of them advocate for them as if they were there own, when they disagree with doctors orders or sense something is going on that the doctors aren’t seeing. Before Finley was born, I thought what was the most important thing was finding the right surgeon. Yes, this was a very important piece of the equation- and I am SO thankful that we had Dr Bliss- but equally important were those supporting players. The respiratory technicians and NICU nurses. And the nurses you spend so much time with them and a precious few you become very close and attached to.  For most of us, our CDH journey is one of the most traumatic, difficult journeys of our lives.  We become different people at the other end of it.  I guess it only makes sense that we become bonded to those special people that walk that walk with us.

Then seeing her tear up and thank me for bringing Finley to see her, how it recharged her to make it easier to go back into the NICU to get back into the rooms with those precious little fighters fighting their fight – this just makes me want to cry right now typing this. Such precious souls are those that work in a NICU.  It is pretty amazing how Finley (and all the other CDH survivor babies) are able to provide HOPE for others.  What an amazing gift! I haven’t done anything in this story. I am just the one witnessing and retelling it – God is doing all the heavy lifting here.  I am just in awe sometimes.

Saturday was the 2 year anniversary of her “coming-home from the NICU day.” A day just as precious to us as her birth date and her surgery day.. these landmarks that pass and we remember and give thanks again. 9/29 is now even more special since a dear friend’s baby was born this Saturday as well!

So aside from my deep thoughts of the day – Finley’s check up was routine and just getting acquainted with the new doctor. We did talk about scheduling her X-Ray (to check her diaphragm for reherniation) and a MRCP (MRI to check that pesky bile duct) for October and I do appreciate any prayers that she will continue to not require any additional surgeries.  My hope is that her bile duct remains the same size and is not growing at an alarming rate which would signify a choledochal cyst.

Trusting.

Since I haven’t really posted many photos here.. here are some from our trip to Oahu at the end of August…

on the beach in hawaii

It seems only fitting to close with one of the verses that sustains us…

Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

A second birthday and the birth of a race…. August 14, 2012

Sunday was a big day. Finley turned 2 years old. As I woke up at 4:45 AM to get ready for Ladybug Run for CDH Awareness I had a little time to reflect on what this day meant. It was such a powerful day on so many levels.  As I held Finley in my arms before I left for the morning, I once again went back to two years ago when I also got up very early to go to the hospital to be induced. I would be meeting Finley for the first time, not knowing if we would have minutes together, days, weeks, or years. The tears began running down my face because I am filled with such joy that I have been able to have 2 years with this amazing little girl. She is determined, feisty, so funny, so beautiful and I just know the Lord has special things in mind for her. He chose ME to be her mother. That is a honor I won’t take lightly.

The race was a HUGE success. I will write more about the race on my other blog http://www.onethousandtwelvemiles.blogspot.com soon. But some things I want to mention now. God was SO present. I got chills over and over when I think about how God made this happen. I know God planted this seed in my heart, and to have followed him and listened and only blessed me so. I didn’t know anything about creating a race. But that didn’t matter. God broke down EVERY barrier. Brought me people with wisdom and expertise, friends with contacts and heart to serve, donations, sponsors – everything fell into place. 237 adult registrants and 50+ kids. For a first year race – these are AMAZING numbers.

My dear friend Cody prayed before the race. She is such a powerful speaker – I was so blessed she agreed to do this for us. I was nervous how this would be recieved by everyone, as it is not standard practice to open a race in prayer – but it was important to me. She read from Romans 8 “³⁷ No, in all these things we are more than conquerors through him who loved us. ³⁸ For I am convinced that neither death nor life, neither angels nor demons,^[k] neither the present nor the future, nor any powers, ³⁹ neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” I almost lost it completely it was so fitting for this day, for everything we have been through.  I got several comments from other CDH parents about how the day was healing for them, and lots of thank yous.  I am just so humbled and thankful to be able to serve. To use my gifts. I can’t wait to see where this all takes us.

To see all the people wearing Ladybug shirts, costumes, to see the day unfold after months (years actually) of planning – it was just incredible. Running with Finley in the Diaper Dash (though she didn’t actually want to go towards the finish line) was so sweet. It was a perfect day – even though MANY things didn’t go as planned. Somehow I was ok with it, because this day actually happened. This day that was just a seed planted not quite 2 years ago.. grew and grew and took on a life of it’s own… and God willing, it’s only going to get bigger.

Thank you again to everyone that has supported us over the past 2+ years.  Our prayer warriors have sustained us – you have prayed for miracles and we received them.

We love you all more than words can express.

23 month update July 13, 2012

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.

Little sister keeping close to the “big girls”

Finley prefers her water toys on land… in the water…not so much.

Firebug Finley

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….

Prayer Requests:

* 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.