Saturday game plan

Finley had a great night – meaning no huge surprises! Her breathing continues to improve, but we still need her to do the breathing exercises that encourage her lungs to open up and cough (and this is painful for her with the incisions). She is becoming more aware and less groggy… we are having more and more time with her eyes open and glimpses of her normal self slowly emerging. Her body has been through a lot in the last 24 hours but it is progressing really well. 

The plan is to remove her foley today, so we need her to be able to pee without it, or it goes back in. We need her stomach and bowels to wake up. They are going to allow her to try ice chips today when she is ready. She had some Tylenol orally last night which she promptly “returned.”  She has an epidural for pain management right now and may continue to have that until Monday as long as it holds in place. It is the best option for staying on top of the pain, so hopefully we don’t have to remove it early. 

Again, things are moving in the right direction. We are so thankful. 

“Praise God, who did not ignore my prayer or withdraw his unfailing love from me.”

‭‭Psalms‬ ‭66:20‬ ‭NLT‬‬

To him be the glory!

Praise God that everything we asked for, he provided!!

Rejoice with us! 
-the organs came off the patch with ease and minimal blood loss.

-there was enough diaphragm to do a primary close!!! This is such a huge answer to prayer. 

-she did great throughout surgery with no issues.

-the surgeon said it couldn’t have gone better!! 

Ephesians 3:20 “Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.”
Prayer requests-
-for no post surgical complications.

-for all the infected tissue to be gone and continued protection against further infection.

-for her breathing… her diaphragm is having some issues waking up and her oxygenation keeps dropping… (but praises that she is breathing room air!)

-for an uneventful night in the PICU and that she will be able to go to Peds floor tomorrow AM. 

We have felt such a covering today. I can’t even thank you enough for going before and covering us in prayer.. we so appreciate every word uttered on Finley’s behalf!

Valley of the Shadow

Surgery time has been set. 11am on Friday.

Finley said she was scared on Sunday night about surgery… we prayed, and then I prayed a lot more for her. Then Monday I picked her up from school and as she overheard me tell a friend that I didn’t want to talk in front of her Finley says, “Mama, it’s ok now. You can talk in front of me. I don’t mind.” I ask her, “But I thought you were scared and didn’t want to talk about it.” To this she says, “I’m not afraid anymore.”

Huh? Was my reply. She tells me she locked her fear in a box, or rather a cave. I asked her to explain this, worrying that she is repressing her feelings.. and she tells me that she prayed and God took her fear and locked it in a dark cave.  It’s gone.

Our God is so good. To have the faith of a child. I have been wrestling with fear since this all began. It is an active process for me. A battle. For her, her faith is tells her God can just take it from her… and he does. For me, it is more of a daily process… it is continually pressing in to him as a reaction to those fearful feelings. I need him on IV right now.  I just reminded her, if the fear does come back – she can just give it back to God again – that’s just how it works.

Thursday, she will be on a clear diet for 24 hours, just jello, popsicles, and apple juice. Praying that she doesn’t notice any hunger pangs and we have a great, mellow day at home.

She still has a bit of an occasional cough, but no fever, Again, just praying if it’s God’s will for surgery this week, that this cough will go away entirely.

Psalm 23

The Lord is my shepherd; I shall not want.
2  He makes me lie down in green pastures.
He leads me beside still waters.
    He restores my soul.
He leads me in paths of righteousness
    for his name’s sake.

Even though I walk through the valley of the shadow of death,
    I will fear no evil,
for you are with me;
    your rod and your staff,
    they comfort me.

You prepare a table before me
    in the presence of my enemies;
you anoint my head with oil;
    my cup overflows.
Surely goodness and mercy shall follow me
    all the days of my life,
and I shall dwell in the house of the Lord
    forever. 

His will be done.

8 days to go

Unless we get a miracle, Finley will be having surgery in 8 days on May 26th.

The granuloma is actually even bigger than it was before. Thankfully, she is feeling mostly like her normal self and unless it gets bumped – she is not in any pain.

She doesn’t want to talk much about the surgery, or hear us talk about it. I am just praying for her to have peace and no fear as we get closer and closer to the date. She is fighting a bit of a cold, so would love prayers for that to pass quickly. I don’t think any of us can deal with pushing this out further. I don’t want surgery to happen, but it feels like it needs to, so I have surrendered to that and just want her on the path to recovery and health. I am so thankful that she hasn’t been sicker with this infection living inside her since October. God has truly protected her from so much already. Probably even things we don’t realize.

A friend is making a prayer calendar so that Finley will be covered in prayer every minute during surgery (once we know the time). If you would like to sign up to cover a time slot, please shoot me a message with your email. I know so many of you will be praying, but it will be so comforting to know that there won’t be a minute that she isn’t covered in protection, petition, and praise.

To him be the glory.

Prayer requests….

We had Finley’s pre-op appointments yesterday. Surgery is set for May 26th, still waiting on exact schedule. Surgery will take anywhere from 3 hours (best case) or 8+ hours.

It feels like God has led us here. We asked for him to make it absolutely clear whether or not she needed surgery, and the puss and granuloma came back. Even bigger than before. I think when they get in there we will find out why this has to happen. Why this is the BEST thing for her, even though we don’t understand, even though this is the most difficult path.

Here are the things we need cover in prayer.

  1. For Finley to have peace and freedom from any fear about any of this. (That would be good for all of us actually).
  2. That Finley will have enough diaphragm present now for a natural close and they won’t need to use her latissimus dorsi muscle.
  3. That they will be able to remove her spleen and colon/bowel easily from the patch, with no complications and no loss of organs.
  4. For wisdom and God to be guiding the hands and activities of everyone involved in Finley’s care. For God to put in place the exact right people to be in that room.
  5. That she will not have a post surgical infection. That they will able to eliminate all the infected material during the surgery.
  6. For God to protect Finley and that she would feel his presence through all of this.
  7. For Rowan as she is dealing with big emotions – help her process, open to up to us and others. That she would draw closer to God too.
  8. For God to be glorified through all of this.

I thank in him advance for the glorious work I know he will do in Finley. Look at how much he has already done.. how many prayers answered?

Her story is just beginning.

IMG_7095

Trust

Some days I write this word on my wrist. It is something I’m not very good at. I’m not always good at trusting God, let alone other humans. It is something I am in active process at. Last week, when Finley’s puss came back on Monday it felt like God had said no to my prayers. That he wasn’t listening. But, that’s only because I don’t see him working the way I want him to be working.

Please heal Finley – so she doesn’t need surgery.

Please take away all the infection (without surgery).

I see him working in the waiting in many ways, especially on my heart. If we have to go thru the door that I don’t want to go through, it is because HE knows better than to answer my prayer the way I am asking. Yes, he can heal her completely without surgery.. but if that is not what he choses to do – he has a reason. What if my altar of sacrifice is letting Finley go into surgery (or just trusting his will, not mine) and trusting God with the outcome.

I think it is completely reasonable for me (and all of you too!)  to keep praying in faith for healing, but I need to let go of it having to look only the way that I want it to look.

My trusting God is that I trust his will be done, on earth, as it is in heaven.

Trusting God that he loves Finley even more than I do.

Which means I can trust his perfect plan for her and me.

As a parent, isn’t this the hardest thing? We want to protect our children from pain. We just want to protect them. Period. If I could take this infection away and for me to have it instead, I would in a heartbeat. And God feels the same way about all of us. On this Maundy Thursday, I reflect on Jesus and his last hours and the sacrifice he would make for all.

Trust is a verb. It is an active process. Much like waiting.

Do I truly trust God with the outcome?

I am working on it. I have no control in this situation. There is not a single thing I can do, except trust and have faith. Nothing to do, except the hardest thing to do. I’ve been here before. Apparently, I didn’t learn the lesson entirely.

Right now I have peace, and I know where it comes from.

Praises…

Finley isn’t in pain and continues to exude joy to everyone around her.
We are on a new antibiotic Cefdinir, and have hope that this may clear the infection, but if it doesn’t.. we have a surgery date set for May 26th.
For an army of people going to battle for Finley in prayer. I am so thankful for every prayer uttered on her behalf. Thank you for interceding for her.

Another CDH Awareness Day….

People would always ask after learning of Finley’s birth defect – “so she’s ok now, right?” And I would pause and say, “well, so far she has done really well, but there is a long list of things that can still happen.”

Of all the things on that long list, I don’t think I ever thought twice about her patch becoming infected.

Tomorrow, which is one of two national CDH Awareness days, we will go to Randall Children’s Hospital for Finley to have her non-healing wound excised. This is our last option before going in and taking out all the Gortex and seeing what options they have once they see how much diaphragm she has now. The infection on the patch is not healing because there are no blood vessels to deliver the antibiotics. That is why infections love man-made materials. After this procedure, If she continues to seep puss and the wound doesn’t heal, then it is time for the bigger, complicated (scary) surgery.

But, God.

I don’t need to fear.

“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.” Psalm 46:1-3

Six years ago on this date, I was giddy with excitement about finding out the gender of my child the next day. I did not know it was CDH Awareness Day. I did not fear for her life, or that the anatomy scan would reveal anything other than a healthy baby and whether Rowan would have a sister or a brother. I was blissfully unaware of just how miraculous it is when the Doctor calls and says, “everything is exactly where it is supposed to be and everything is measuring within normal limits.” Many parents don’t hear those words. My life was forever changed on 3/31/10. I am thankful for the road we have traveled, and I am so thankful for every moment we have been blessed with both our daughters.

I have spent too much time worrying about things that never happen, and then shellshocked by things I never expected. There is a reason why God tells us 366 times in the Bible not to worry. Because we waste precious time. Because he has us and is with us every step of the way. Finley has battled an infection for the past 6 months, but she has stayed amazingly healthy. The infection is not making her “sick”, which is why we have been able to stay the course and wait. I praise God that other than the frequent upset stomach (which may be due to long term antibiotic use), she has been able to do most activities and go to school and be her spunky, joyful little self. I am thankful for the talented medical team we have here in Portland. Not one children’s hospital – but two. Our surgeon’s office has been incredible throughout this recent trial. I am thankful that we have excellent insurance through Jon’s work, so that even though we hit her deductible by February, and her out of pocket max in March- that this will not bankrupt us.  I am thankful for all the people CDH has brought into our lives. Our CDH family all across the world that is bonded by this dreadful birth defect. Today I will focus on the praises to drown out the fear. So much of fear is just lies. Remembering the monuments of what God has already done in Finley’s life and rejoicing- and I don’t think he’s done. So we continue to walk in faith and trust him.

Rejoice in the Lord always; again I will say, rejoice.  Let your reasonableness be known to everyone. The Lord is at hand;  do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Phil 4:4-7

So tomorrow, please wear turquoise, or a Ladybug Run shirt and tell someone about CDH.