Where God leads you

We are coming up on the 4 year anniversary of the beginning of our CDH journey. The other day I met a woman who was pregnant with her second child who would be going in for her ultrasound in a few days. I told her I would be praying for her appointment. I didn’t tell her why I  have a new appreciation for the 20 week ultrasound and just how many things I know they are looking at. How a healthy pregnancy is SUCH a miracle in and of itself. How every says they just want a healthy baby – and the complete and utter shock it is when your baby isn’t. I remember my thoughts the day of my 20 week ultrasound and how I was so incredibly excited to learn the gender of our baby. That was my focus. I assumed everything would be fine. I was not worried about birth defects. We had opted against the earlier amnio because we knew it wouldn’t change the course of our decision if we were told the baby had Downs or another birth defect. Looking back at the journey – the highs and the lows – I see God. In so many ways and places.

I am a different person today with a different faith. You see, the person who started this blog was quiet about their faith. I definitely did not lead with it, and I was afraid. I remember the first posts I made where I quoted scripture and boldly asked for prayer – how that was such a step outside my comfort zone. I was afraid of alienating my non-christian friends. And then… as my world was being broken down all around me with the knowledge of this baby that was growing inside me, might not live outside of my body. I stopped caring what others might think. I knew I needed God in a way I had never quite needed him before. Not just to heal and protect my baby – but just to endure each day. I felt like such a mess – yet people always commented on my strength.  I was quick to remind them whatever they saw, whatever strength perceived. That did not come from inside me. That is entirely God. I am still awestruck and at a loss for words that God would do all that he has for me.  Why? When we were given this diagnosis I never gave much thought to why me. Why not me? So many sad, tragic things happen to much better people in this life. Why not me? But more often, since it all happened and I have seen so many babies not make it – I do ask myself – why did Finley make it? Why are we so blessed? I wonder what the plan for her life is and what God intends for her to do still. And I come to the verse, we are blessed to be a blessing. “I will save you that you may become a blessing” (Zech 8:13)  That is what I want with my whole heart. To be able to support and love and offer hope by sharing Finley’s story. By walking with other families the way others walked and supported us.  I don’t think God did this to us.. but I think this is a way that God uses all things for good.

4 years later…

I have a healthy, happy 3 year old. She is such an amazing little human. To see my two daughters play together (and fight) – it is thousand+ answered prayers. Finley had a lung function test back in December and actually did the test correctly (2x! Yes, I am totally bragging on her!) and she had above average lung function for a 3 year old. How could that even be possible? Well, the comparative data pool isn’t huge since many 3 year olds can’t even do this test accurately. The office said they don’t usually do this until they are at least 4 or 5 – but after spending some time with our precocious Finley, they decided she was not average.  How many people prayed for lung tissue for my girl? Just hearing those results was to me a total confirmation of answered prayers.

My faith was lit on fire. I am no longer lukewarm.

I have a CDH family that I am so thankful for. Such amazing people I have met along the way. We are bound together and understand each other in such a powerful way.

Our friends and family and even perfect strangers that prayed and supported us in countless ways. I love you all so much. I will never forget any of it, and it is because of all of you that it inspired me to be the blessing that you all were to us.

How God planted a seed about a race while Finley was in the NICU and how that has grown to a Foundation, a Portland race (now in it’s 3rd year), and next year – a Seattle race. None of these are things are things that feel comfortable to me. But somehow, God has always brought me the people  to make it happen.  I am excited and terrified to see where he leads me next.

Sorry for such a rambling post – just a lot of thoughts that have been going through my head…

Relief, Elation, and Gratitude. Miracles do happen.

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 month update

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….

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.

Don’t feel guilty

I wrote this post yesterday.  I worry about offending someone with this post. I hope with every fiber of my being that these words don’t hurt anyone, and that they are ok. I love the parents I have met along the way whose babies haven’t made it so much- and I don’t ever want to hurt them… I have been reflecting about the difference between being sad and feeling guilty.. and just letting go of the guilt.. but I will always be devastated when a little one loses their fight.

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There are 2 paths to becoming a CDH parent. You either know it going in, because at an ultrasound appointment someone notices an “abnormality” and then you spend the remaining weeks of your pregnancy processing this information however you do that. For some parents it includes  researching, praying, reading, crying, writing, blogging, praying, talking, crying, laughing, crying, getting hope from survivor blogs, trying to avoid the angel stories, but then reading them anyway, and praying. That was pretty much a quick summary of my 20 weeks.  For each of us, we prepared differently. There is no wrong or right.. there is just what is right for you.

There is another group that doesn’t find out what CDH until after the baby is born. It takes them by surprise. They went into delivery expecting a healthy baby. Sometimes the CDH is discovered immediately as the baby goes into distress after birth…. or in even rarer cases – it is not discovered until days, week, months later. But most parents with undiscovered CDH discover it close to birth.  They have to process while their baby fights for life. This is another journey.

And then each set of CDH parents end up on one of two paths.  It’s always comes down to life or death. Angel or survivor.

Finley survived. I will be thankful, grateful, and awe struck every day of my life about this. For those of us that have survivors, each baby loss is such a powerful reminder of what could have been. It is easy to feel guilty. To wonder – why did my baby make it, when so many others do not. Survivor guilt. I haven’t met a survivor mama that hasn’t struggled with these thoughts and emotions.

I don’t know the why. None of us does.  I can’t speak for a mother who lost her baby, but I don’t think any of them want the survivor-mamas to go around feeling guilty. We each have our own path, our own journey.  For a birth defect that claims an average of 50% of those effected – I think those that survive – not a single minute should be wasted feeling guilty. That was not your path. Your baby made it. That is a miracle, it is amazing, you should not feel bad rejoicing from the hilltops.  If your baby is a survivor  you are allowed to celebrate that without guilt. I think I have finally come around to believing this.

That doesn’t mean that our hearts don’t break with each loss.

That we don’t sob at our computers, iPads, and smart phones when we read of another baby whose battle is lost all too soon.

But I think it is time to say it outloud – Don’t feel guilty. Say it with me, “I don’t feel GUILTY that my child survived.”

It’s ok to be happy that your child survived, while being sad that others haven’t.

My heart is broken today with the loss of Esther. Her parents have written a beautiful testimony to God during their journey and are such amazing people. Please continue to pray for comfort and peace for them. All day, my thoughts and prayers keep coming back to them. They continue to glorify God on the day and days after their child went to be with Jesus.  I have never met Rhonda and Jason – but I love them so very much.

CDH has brought so many incredible people into our lives. That is one of many blessings for us. I don’t know many of the why’s… but as I have said before.. I know we are blessed to be a blessing.  So I will focus on that.

“To everything there is a season,
a time for every purpose under the sun.
A time to be born and a time to die;
a time to plant and a time to pluck up that which is planted;
a time to kill and a time to heal …
a time to weep and a time to laugh;
a time to mourn and a time to dance …
a time to embrace and a time to refrain from embracing;
a time to lose and a time to seek;
a time to rend and a time to sew;
a time to keep silent and a time to speak;
a time to love and a time to hate;
a time for war and a time for peace.”

 Ecclesiastes 3:1-8

Awareness.

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Thank you to everyone who ran, walked, posted comments today…

2 years ago, I was told my baby had a 40% chance of survival. (He was wrong about that number).

I was asked multiple times if I wanted to terminate for medical reasons.

Today, I have a healthy toddler with no health issues,  and with slightly undeveloped lungs.

Reflecting on the past 2 years….and taking time to pray for all the survivors and angels we’ve “met” along the way. Thankful for our CDH family, and the amazing support and encouragement in that community. So many parents giving back and trying to make something good out of it all…you are all so inspiring.

Thankful for amazing friends and family, and strangers who walk this journey with us and cover us with love and prayers.

Thankful for a faithful God who has been there every step.

We are aware.

19 months old

Finley is 19 months old today. 19 months have passed since we were in the NICU and she was fighting for her life. Today, she is a normal, healthy, happy 19 month old. How can that be? How are we so amazingly blessed? I don’t know the answer to that question- but I know I do thank God each day for the blessings of both my daughters. I know I have probably written similar words already – but it bears repeating. Again and again.

I love watching the interactions between Finley and her sister. The unprovoked hugs and kisses. The cuddles on the couch as they watch a few minutes of TV together before Finley gets up to climb or jump off something. I love watching them begin to play together – the latest game is Rowan lays on the ground and has Finley climb on top of her and bounce like a bucking bronco.  Of course there are also the loud screeches and screams as Rowan grabs a toy from Finley’s hands- because as you parents all know, the most attractive toy in the house, is always the toy in someone elses’ hand. Finley has started fighting back and holding on tighter and it will be ‘fun’ to see them learn to work out these battles amongst themselves.  It brings me such joy watching them together and doing all the things I wondered if…. Just so thankful.

Finley is not afraid of much. Yesterday we were at a birthday party and she wanted to get into the bounce house filled with 6 and 7 year olds all jumping wildly. Something that would have had Rowan running in the opposite direction at this age. Finley wanted in. Insisted on going on. So I held my breath as she jumped with these larger kids all around her, hoping that no one landed on her… but she had a grand time and went back in multiple times.  The fearlessness of the second child.

I think she is probably going to give me some grey hairs.

19 months. Only 5 months until she turns 2! That just seems crazy that time has passed so quickly. Supposedly, the greatest reherniation risks are those first 2 years, but it can happen anytime – as I have read of many other CDH’ers reherniating at 3 and 4. But I will not live in fear of this. If there is one thing God has taught me in this journey – it is to trust him. To have hope in him. To bring all things to him in prayer. I was looking back though Finley’s journal last night and once again amazed at how Finley was born with mild-moderate pulmonary hypertension on 8/12 and by 8/23 an echo showed severe PH – which by 8/30 had improved enough for surgery and by 9/13 it was minimal and by her 6 month follow-up it was gone.  It gives me chills when I remember and praise God for how he has worked in Finley’s life. Both in her physically and how he has used her life to affect others.  I hope her story continues to give other families hope. There is no power in fear. There is great power in hope.

Happy 19 month birthday lovebug!!

Romans 15:13 “May the God of hope fill you with all joy and peace as you trust in him so that you may overflow with hope by the power of the Holy Spirit.”

added 5:00pm – I forgot to add.. we are trialing Finley off Prilosec this week – pray that she doesn’t have any reflux issues and will finally be off ALL meds!!

Best gift ever…

I am so thankful. I keep reflecting on that in the final days of 2010 and am in complete awe of the journey we have been on.

January 1st, we began the year with me pregnant and oh so sick. All I could think about was just getting through that first trimester until I hit that magic spot when the medicine finally starts to help me.

March 31st  is the day when we found out that our baby was a girl (we had already agreed on the name Finley, so we looked at the ultrasound and said her name with joy) and then 5 minutes later we heard the words “congenital diaphragmatic hernia” for the first time.

April 7th, we met Dr Bliss.

August 12th, Finley arrived and began fighting.

August 30th, Finley had her repair surgery.

September 29th, Finley came home.

October 8th, they diagnosed a Cholodochol Cyst – that would be gone 3 days later.

We have been witness to several miracles and I am humbled and so grateful for all that God has done for us. I have learned so much this year and I am a changed person because of our journey and because of Finley and for that I am thankful. I appreciate all the people that have walked, loved, and prayed with us this past year. My heart aches for those that lost their babies this year and I will continue to pray for all the CDH families.

The best gift ever is the two, healthy, beautiful daughters I have been blessed with. I don’t need anything more in this life than this wonderful family and friends I have. Family, people – that is what is important. How we can touch and carry one another through the difficult times and rejoice together in the good.  Thank you God for being there for us in so many ways throughout this year.  I am excited for a new year which will bring many new milestones for both girls and I can’t wait to share them with all of you!