Drama Queen January 16, 2012

You may remember that in Finley’s early days she really showed her character traits of feistyness and earned herself the nickname “drama queen” with her nurses. At the age of 17 months  those traits are only becoming more evident and I just continue to praise God for her stubbornness, strong will, and fierce determination. These are the things that God blessed her with that gave her that will to keep fighting in the NICU, and now gives her the will to fight the car seat, the high chair, diaper changes, clothing changes, big sister stealing toys from her (this is an area where it comes in handy)…shall I go on? I laugh because she is just so funny. Since she started walking she does not want to be contained. Ever. She is a busy girl and you cannot stop a rolling stone. I think I had a bit of this with Rowan too – this is a stage I must block out. When you have to practically pin your child to the floor  to get a diaper changed. But whenever I hear that scream of defiance, I smile and thank God for it. Now, when I am in the parking lot fighting to get her in the car seat – there might be a minute of frustration in there too – but I am forever thankful. I think I may have two strong-willed girls on my hands – but I wouldn’t have it any other way.

As, I am trying to write this update about Finley, but my heart is heavy and I keep thinking about another CDH baby fighting for his life today. Killian. I keep praying that God will intervene and help him pull through this. Please join me in praying for this family.  Reading his mama’s post brought me to tears.  www.killiankayne.blogspot.com. Hug your babies close today. Be thankful for good health. Give yourself grace if you didn’t get everything done.. if you loved on your children today that is all you really needed to do.

Leaving you with some recent photos of Miss Finley…..

Another first….ear infection. December 29, 2011

Since Finley’s cold she has been off. Her sleeping patterns have been off- waking sometimes after an hour or two, multiple times through out the night.  We also noticed sometimes it just seemed like she was breathing faster. Finally, last night I thought maybe she was teething since her cold is gone, but she is still not sleeping, so I gave her some ibuprofen and viola- she slept a solid 6 hours straight.  I had a Doctor’s appointment already scheduled for today for a vaccination and decided to have the Doctor take a look at her since I knew something wasn’t quite right. Mama gut. Always trust the mama gut.

Lungs sounded clear.

Checked her Pulse Ox- 99% while screaming her little head off.

Ears… Left ear was very inflamed.  Hmm… now it makes perfect sense why she would wake right up when you laid her in her crib and she would scream.  This may have seemed very obvious to some of you- but mind you, Rowan has NEVER had an ear infection so I just didn’t even think of that. Since she has probably had this already for several days and it has been effecting her sleep, we opted to treat with antibiotics. Also, will be keeping up the ibuprofen for a few days too. I was happy to see she has gained a few more ounces too – even while being sick. She is now up to 20.13…. hoping to finally hit 21 pounds the next time we are weighed!!

It was one year ago today that Finley reherniated and we were back at Emanuel being admitted. I am still in awe when I think back to everything that transpired and how I see God’s hand so evident.

“Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths” (Proverbs 3:5,6).

Ladybug Run….am I crazy? December 23, 2011

I am sitting here wondering what I got myself into. I am scared that I have bit off more than I can chew. I am nervous. I an doubting myself big time. Wondering if I should just bag it.

There is a lot that goes into planning a race. A lot.

It was seeming manageable and I am pretty organized. I have a Race Committee (love you ladies). I have a race organizer- who i also love. I have secured my race insurance and almost done with securing the location (Champoeg Park). Now I just came to the decision today that I have to create a non-profit to make this all work. Sponsors probably would be a little leery of writing large checks out payable to little old me. But creating a non-profit? Wow. That’s big. That is what has put me over the edge and is freaking me out a little. I have all these big ideas and things that I would love to do – but the fear of failing is there. If I don’t go all out – it doesn’t seem like this big huge commitment. But, if I have non-profit I could help local CDH families more directly since I just did find out that it wouldn’t be feasible to ear-mark money like that via the local hospitals.  I have felt from the very beginning that this is something I am supposed to do… so many things have come together that can only be God.

But…still…..

Me? Organizing a race was one thing… Creating a non-profit seems so much bigger.

I am hoping that this fear and freaking out it because I am going outside my comfort zone and maybe poised to do something really good. We always feel under attack at those times. So I will push forward. But faithful readers and local friends- I will need your help to make all these big dreams a reality. I will need lots of volunteers come race day (8/12/12)  and lots of help getting the word out to attract a huge turnout. Not to mention prayer!

And sponsors. Lots of sponsors.

Prayers for clarity and peace right now. Lord, if this is your will – let that be clear to me and give me the strength and knowledge (or bring the right people to me) to make this all a reality.

 

 

 

First cold December 22, 2011

It is something all CDH mamas dread. We work so hard to keep the nasty cold/flu germs away – but at some point we all lose the battle and our little ones with their varying degrees of fragility become sick. Some of these babies end up back in the hospital, back on oxygen support to help those underdeveloped lungs get over the illness without further injury. Some babies are lucky to get through it rather unscathed. I think we CDH mamas all spend more than the “average” amount of mama time watching our children breathe… looking for retraction, nasal flaring above “normal” for them. We double check – triple check – and check again that they are breathing. I think for me, for a long time it was hard to believe we were so lucky that we were going to be able to keep Finley. I saw so many and still do – that didn’t make it.. why would I be so blessed to be able to take this beautiful baby home and be able to raise her. So part of me thought something terrible would still happen. I think that is partly a PTSD reaction to what we had been through. As time has passed and we are further from our last hospitalization and countless prayers for help with this- it has gotten better. I have gotten to the state where I am thankful for being given today and try to just focus on this day. I don’t know what tomorrow will bring – but we’ll face that tomorrow. In the meantime I am just thankful for where we are.  (Ok, I have digressed, but it felt important to share.) One of those blessings is that Finley didn’t get her first cold until 16 months.

I have said that statement several times to the amazement of others. I don’t think even Rowan was cold-free for 16 months – and Finley has the blessing of having an older sibling in preschool. At the first sign of that drippy nose I went on higher alert. Rowan had gotten the cold first- then me, and then Finley started with the drippy nose. By Saturday it had turned into a full cold with a cough, so I took her in to the doctor since I didn’t want her to get worse through out the day and then have our only recourse be the ER on Sunday. The Doctor working that day was not our usual Doctor, but I have seen her before and really like her. She ordered an X-Ray just to be safe to check for early signs of pneumonia. As she said, if something were to go to her lungs it would become bad fast. Since Finley was also due for her CDH follow up X-Rays – it would serve a dual purpose. It was amazing looking at the scans with the Tech afterwards. She said if I hadn’t told her that Finley had CDH (and she didn’t notice  the large number of clips, gortex patch, and a gortex plug…) she wouldn’t have known it looking at the size of her lungs. All I can say is Praise the Lord! If that wasn’t the result of prayer, I don’t know what is.. because for Finley to have that much lung when she had a medium sized defect with a whole party of organs in her chest – is just a miracle. This doesn’t mean her lungs are normal “functionally” since all those organs squishing the lungs also effects the development of all those amazing things inside the lungs that do their magic. But given all the positive things we are seeing with her- she is in good shape. On the cold front, her lungs looked beautiful and clear and we were told just to wait it out and watch to make sure it didn’t get worse.  Finley has had some extra nasal flaring having to work through the congestion while feeding – but otherwise seems to be faring really well. I just am so thankful for this. I continue to pray that she is able to kick these cold germs as this cold seems to be a bit of a lingerer.

Finley is also 100% walking now. About the last week or so before she turned 16 months she decided it was time and there has been no looking back. Pretty much what I expected – but I am still so amazed by her. Every day.  I am so blessed to be the mama to these two girls. As my mom says – the best presents ever.

15 month appointment – just a few updates November 21, 2011

On Friday, Finley had her 15 month well-child appointment. She is up to 20lbs 7.5 ounces – 10th percentile, but Dr S is not worried. With the increase in activity, and not an increase in appetite, this often happens but usually they catch back up in a few more months. It’s interesting because if you look at her, she doesn’t seem like a super skinny baby. She has chubby cheeks,  a tummy, and some fat rolls. I may have to throw a party when we finally hit 21 pounds. I will continue to try to fatten her up with good fats, and not stress too much about it.  Early Intervention also came last week and she is right on track in all areas.

She has been taking a few steps for the last few weeks but not walking consistently. The most we had seen was about 4 steps and then last night at Jon’s birthday dinner at Swagat (our favorite Indian restaurant in Beaverton) she decides to show off for the table and walked the length of the table (maybe 20+ steps), pausing only to applaud her self (and let the table clap for her) and continue along. It was the cutest thing and just made my heart sing. As I see her meeting milestones and not being delayed at all, I am once again, humbled and filled with gratitude for where Finley is at.

A news Anchor in NY had a baby with CDH and is sharing her story – Amazing Grace.   Love seeing awareness being spread!

October photo session…. November 9, 2011

Thought I would share 2 of the amazing photos that Michelle Redfield at Casual Camera Photography  took of Finley last month…

Giddy….. November 3, 2011

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.

AMAZING!!!

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.

My little ladybug Finley...

Quick update – no surgery to schedule right now!! November 1, 2011

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.

Waiting October 29, 2011

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).

Mass General Research Study – CHERUBS Donation Video October 26, 2011

Wanted to share this video that shares some of the interesting research and potential treatments for CDH in the future.. CHERUBS was able to give this donation due to the Vivint contest – so thank you to all of you that voted!!