Chloe...Hope

I'm not really sure what to write.  Just felt I needed to "do" something as I sit here in anticipation.  Sure I'm anxious and nervous and scared.  Tears have come and gone.  "What ifs" have popped in my mind.  I thought I'd be okay by piling in a Transformers movie marathon with the boys over the weekend.  I thought it would take my mind off of "it."  But I'd be kidding myself...I was kidding myself.

Then late last night we got in the final pics from our photography session with Ms. Miranda.  The above pic is one of the ones she took.  Oh it was the whole family too.  Something that my wife, Amy, has been wanting for a long time.  She's waited nearly 5 years for professional pics.  But...

We all know we scheduled the pics because of "it."  That thing that's coming up on Monday and has to deal with our little Chloe.  Because nothing in life is forever, right?  Isn't that what we say all the time to relieve ourselves of the grief or disappointment?

The Bible says that the "Lord giveth and He taketh away."  But it also says that God is our "ever present help in time of trouble."  Jesus promised us that He would never leave us nor forsake us.

I think the verses I have been holding onto the most these past several weeks are:

"³ We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. ⁴ And endurance develops strength of character, and character strengthens our confident hope of salvation. ⁵ And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love." - Romans 5:3-5 (NLT)

"I know what I’m doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for." - Jeremiah 29:11 (MSG)

It feels like we've come a long journey.  But it's only been a few weeks.  It's only been a few bumps and potholes in the road of life.  And in the grand scheme of what we will see on this earth, we've really not been through a lot.  That's at least what I can say right now as I feel like I'm sitting in the eye of the storm.

You know what I'm talking about, right?  That place in the storm where everything seems to be right.  That place in life where you can see this picture and think, "Man, I am so blessed by the Lord."

Everything is right where it should be.  And praise be to God for that!  Of course!

Tomorrow is Sunday.  We will head to church like we always do.  We've asked the pastor there to anoint our daughter with oil and pray over her, over the doctors, surgeons and nurses, and he will most likely pray, "Your will, Lord, not ours."  We'll have many people tell us they are praying for us and I know they will be.  Then we'll come home and finish packing for the week.

We'll then sit around and wait for Amy's mom to drive from Traverse City, Michigan, and for my mom and grandmother to drive from Davison, Michigan.  Amy's mom will stay with our other beautiful babies and care for them.  My family will come to Indy with us and will stand vigil with us as we try to get a good night's sleep at a nearby hotel.  Thankful to my mom and grandma for taking care of this cost.

Our baby will only be allowed to have Pedialyte tomorrow through 7:00am on Monday.  Then we will make the very short trip from the hotel to Riley and be there at 8:30am.  At this time, the nurses and doctors will start to get vitals and then she will be given something that will make her sleep while they insert an I.V.  Then around 10am, we'll give our baby up completely to the surgical team and we will wait about three and a half hours.  I pray that it will not feel longer.

We ask that you will join us in prayer as many of you have already been doing.  Pray that God will bring Chloe through this.  Pray that God will guide the surgeon and the surgical team.  That every movement they make will be according to His plan.

For that is what it's about....His plan.  Not our plan.  Thanks for reading this.  I pray this song will help bring you encouragement as it has for me.

Chloe...and Faith

I thought I would take the time to update you on Chloe.


She is our precious one.  She opens her eyes often and looks around at everything.  But she still loves to cuddle with Mommy after she pigs out.

 And of course while Mommy is home with her, she has the privilege of being loved on by her big
sister, Katy.  Katy is such a huge help too!  No.  She REALLY is!  We are blessed to have such a bunch of caring siblings, but there is nothing like being sisters...or so I'm told.
 

This past Tuesday we took baby to Riley for a check up.  Our doctor, Dr. Johanna Askegard-Giesmann, had been called away to an emergency to St. Vincent and could not be at our appointment.  We saw her partner Dr. Karen West who was very positive about Chloe's condition and current health.  We were told to continue to dilate her, but to increase the size to the next number.

Then Amy (my lover of all medical shows, etc) asked what the surgery would entail.  I kind of wish she wouldn't have.  I think I was in the good kind of denial and thought it to be a simple procedure.  It is not at all simple.

The anus must be moved probably about 1-2 inches from its current location.  There it will need to be attached to muscle tissue which means more incisions.  After that process is complete there will then need to be reconstructive work to fill in the space created between the anus and the vaginal area.  This is especially important if she ever plans to have children.

After the surgery, Chloe will then need to be watched for infection and allow for healing.  This will take 5-7 days total including the surgery.  During this time Amy will have to pump since she will not be able to feed our baby.  Baby will receive all her food and fluid intravenously.

After that, we will hopefully be able to take her home where we will wait another two to three weeks and then once again return to Riley for a post op appointment.  Here the doctor will start the next series of dilation.

That's what we know so far.  The surgery will most likely be scheduled at the beginning of December.

I am struggling with this a lot.  The more it becomes a reality, the more my heart takes over.  I'm scared.  I don't want to take my daughter down there to have surgery.  In my mind she's fine.  There's nothing wrong with her.  Yes, I know this isn't true.  I just wish it was.

We're faced with decisions about what to do with our other three wonderful kids during this time.  Do I work after a few days?  Does Amy come home at all?  Who will watch them this time?

I believe God is in control.  I know He has everything in His sight and He knows my heart.  It just doesn't make this next couple of months any easier.

We could really use your prayers.  We have continued to be blessed by meals, cards, and gifts.  We couldn't ask for a better family and church family.  They have given us so much support.  But in all honesty, I think we're going to need it even more in the coming weeks.  Thank you so much for all you have done.  It won't be forgotten.

Keep praying for Chloe!

Chloe...Blooming

Chloe Elyse

We want to start out by letting you know that from the beginning we never once forgot about all those little ones, nor their parents, that have experienced similar situations.

Abbey

Matthew

Mason

Gabby

Nicole

Ezra

Those names kept rolling through our hearts and minds.  We remembered hearing about how their parents processed and went through that time; those times in their lives.  Some of them still make trips and visits to hospitals.

It was a little after 11:30pm on Monday, October 27, when Amy said the words "All right.  Let's go."  It feels like an eternity.  We got to the hospital, got registered and were escorted upstairs.  We were placed in LDR 6.  Time: 12:10am, Tuesday, October 28.

Our little Chloe Elyse was born at 1:58am just under 2 hours later and like the last two without any pain medications (GO AMY!).  She weighed 7lbs 6.2oz and was 20in long.  She came out just like all three of our babies have come out.  Perfect.

Moments after delivery

We had a great couple of Facetime sessions with grandparents as they were introduced to their newest granddaughter.  We were excited when it seemed she was going to nurse well and latched on well.

The nurse came to us in LDR 6 and needed to take Chloe to get her shots, etc.  They moved us in to Rm 444 (I think it was because we now had 4 kids? Ha!)  We decided now would be a good time to get some sleep.  Time: 5:04am, Tuesday, October 28.

It was 20 minutes later when the nurse arrived into the room.  I was going to ignore her and keep sleeping because I figured she was there for Amy and not me.  So I started to drift off.  That's when I heard from Amy, "Chris.  CHRIS."

I took the covers off and sat on the side of the little "chair" bed that I was on.  That was when the nurse told us that Chloe was having trouble getting warmed up.  They were trying to do this because they wanted to give her a bath.  They kept taking her temperature under her arm but needed a more accurate reading.  So she decided she was going to try a rectal thermometer.  But she couldn't find a place of entry.  There was no opening.  We were informed that she had an impatent anus.

This wasn't totally unsettling until the words came out of her mouth.  "We're going to have to transfer her to another facility." That's when we realized this was no small matter.  But praise be to God because not less than 10 minutes after we were told, a dear friend from our church, who is also a nurse, came into our room.  She gave Amy a hug and then asked, "Can I pray with you guys?"  

Just when we needed it the most God put her in our path.

The next hour or so was spent trying to make plans for our other three kids.  A huge thanks to Bev (Amy's mom) who canceled the appointments she had to come down and give our kids a sense of comfort and normalcy.  What a blessing.  We also had to see if Amy could be discharged and what hospital were we going to send our little baby girl.  During this time we posted a few statuses to Facebook and the prayers, texts, emails and calls started to pour in.

One such call was from a teacher friend of Amy's from Justice Intermediate where Amy works.  Amy and I had just discussed money and me missing work, etc.  The teacher said she'd take care of it.  A collection was taken.  An hour later two teachers showed up to Amy's room.  A significant amount of money was given to us.  

God knew what we needed and He reminded us that He wasn't going to leave us.

Amy's doctor came in and gave his consent to release her early so she could go down to Indy.  Meanwhile Riley Children's Hospital was called and the Lifeline ambulance was dispatched.  We waited, prayed and prepared.

I'm very thankful for the nurse (I never did get her name) who came to me and explained that when Lifeline would arrive they would come in with a team of EMTs and it might be overwhelming.  It allowed me to prepare my wife.  It allowed me to be prepared.  When they arrived we learned she wasn't kidding.  I took Amy back to the room to get dressed and to finish the discharge process.

A few minutes later the team arrived with Chloe.  We had to sign some paperwork.  We thanked them.  We prayed for the safety of the ambulance.  Then we touched our little one and with tears let her go on her way.

Time: 11:30am, Tuesday, October 28

 

Amy touches Chloe's little leg as she is strapped and ready for transport to Indy

It took us another 45 minutes to get ourselves loaded up and ready to head out.  All the while we were still receiving texts, calls, and FB comments.  People were praying.  Many took the time out of their day to kneel at the throne of God to ask for help for Chloe.  I even received a call from a friend in Indy.  He offered his home if needed and said he would come visit once he was available.

I wish I could list all those that offered a prayer, offered to help or bring us anything (several that were either coming to Indy or who live in Indy).  But the list would be way too long.  A fact that awed and amazed us.  We spent a lot of time with tears in our eyes.  Many times it was because of how grateful we were for God's provision.

God knows what we need when and where we need it.  Always.

We arrived at Riley and headed straight to Chloe's room.  There we sought information.  And praise the Lord, we received answers.

We were told that she HAD an opening!!!!!  After being told all the possibilities of what COULD be going on, the answer was so much BETTER than we could have hoped for.  But there still is an anomaly.  Our little Chloe has what is known as an imperforate anus.  The anus isn't in the proper location and is higher than normal.  The nurse said that we would be here at least 4 or 5 days.  When we asked if there would be surgery, we were told not during this visit.  Why was she being kept then?

We still didn't know if she had a functioning bowel.  The doctor also informed us that many times a baby with this condition also has other things that are wrong.  There would be several tests.  They needed to make sure.

The next several hours we discovered new and wonderful things about Riley.  We were given a room at the Ronald McDonald House that is within the hospital.  This place provides three meals daily for free to parents.  It also provides a free washer and dryer.  I've never truly understood humility until now.  How humbling is it to receive love from others you don't know!

This morning the surgery team came into the room to inform us of some news.  Our little Chloe was clear of any other anomalies!  The test results all came back negative!  God is good!  We even received better news when we learned that we would be able to take Chloe home on FRIDAY as long as she eats and gains some weight!  Please be praying for this to happen!  We miss our other kiddos too!

OUR GOD IS AN AWESOME GOD!  HE IS REAL!  HE IS FAITHFUL!  AMEN!

The road ahead...

We will be taught how to dilate Chloe's anus (which will need to take place 2 to 3 times daily) as we wait 6-8 weeks for her to grow so she can have surgery.  When that time comes we will come back down to Riley for a 2-3 day visit.  The surgery will move her anus to the correct location.  This will give her back the muscles used to push, etc.  We will then have visits every two weeks.  This will get longer in between until hopefully and prayerfully simple annual checkups.

What HOPE God brings to us during the times when there seems to be none!  HE IS GOOD!

We just want to thank everyone of you.  ALL of you who have been there with us on our journey.  We are so blessed.  AND HUMBLED.  We know we don't deserve your love, but you have given so freely.  Thank you for being Christ to us!