I Would Have Missed This....

It's often frustrating and discouraging that we weren't able to stay in Texas to have the fetal surgery.  I get angry at the doctors for the mistake they made in not letting us have it as I feel Caroline move and realize she could lose her leg movement.  So I want to remember the amazing moments that I got to experience up to her due date (things I would have missed if I had been in Texas for 3 months).

Trey wanting only me to comfort him when he bumped his head 3 times in one day.

Practicing piano with Gia and watching her growth.

Joey sticking out his lips and talking in a deep voice (I whanna snack, Ma.Ma.)

Trey reading his first sentence.

Nerf gun fights.

Picnic movie lunches on the living room floor.

Caring for Gia in the middle of the night when she had the stomach bug.  Then cleaning the bathroom after a "missed attempt" while she stood beside me keeping me company.  When I told her to come get me if she missed the potty during the night, she said, "but then you won't get to sleep."  And she told me, "I hate being sick.  I can't even help making dinner!"  Sweet girl!!

Joey putting a plastic bag on his head as a hat and wearing it around the house for 45 minutes, like it was a totally normal thing to do.

Meeting Kenna's baby.

Hugging Joey for a good 2 minutes when I lift him out of the crib in the morning.

Learning that Joey's favorite color is red because that's the color shirt he wants to wear everyday.

Hearing Joey say, "I'm not shute (cute)!"

Hearing all about Gia's day after picking her up from school and having good conversations with her on the way to piano.

My long walk in the neighborhood with Trey where I got to ask him all about his favorite things.

Valentine's Day date with Bobby.  He made the best beef stroganoff he ever has and we watched Wonder Woman.

Giving Trey a bad haircut and having Brianna come over to help me fix it.

Trey making a "race track" during his morning bath with the bath paint and being fascinated that the water turned blue.

Watching shows with Bobby after the kids go to bed.  He often gets me ice cream.  One Sunday afternoon, I won a bet and he got me an orange soda.  I let him get one, too :)  I made an Orange float out of mine.

Going in Gia's class for math helpers, Valentine's Day and Math Night.

Enjoying Bobby's Mexican roast.

Taking photographs of new babies and pregnant friends.

Wednesday, March 14, 2018:

Two warriors off to save the day!

 Joey's warrior run!

I asked Trey to smile...

I asked Joey to smile...

I asked Trey to really smile, ha ha!

Joey's "Hulk Smash" face

Trey's Kerby face

They were attempting to both make Kerby faces.

This morning my boys ate fruit loops, watched Sonic the Hedge Hog, and then went outside to play and watch the front loaders and other diggers work on our street.  They pretended to be Sonic, Kerby, Captain America, "Hulk Smash" and probably others that I didn't hear.  They ran around, climbed on the stones, put on their "warrior" faces and just enjoyed each other.  I was wrapped in a blanket with my book and camera in hand having the best time watching them.  Cool and cloudy, messy faces, hair and teeth not brushed yet, my PJs still on and a constant change of super heroes... makes for the perfect morning outside :)

Saturday, March 17 (St. Patrick's Day)
- making green eggs and cinnamon rolls with green frosting for breakfast.  Listening to Irish punk music and watching Bobby dance with the kids.  Telling the kids all about who St. Patrick was and how he told Ireland about Jesus.  We watched a cartoon video about his story and they loved it.  When Gia heard the part about St. Patrick going back to Ireland to share the gospel with the people who put him in slavery, she took off running to the bathroom to read the verse that has been on the mirror:  "But I tell you, love your enemy and pray for those that persecute you..."
- Getting ready for Nana's birthday (running errands with Gia and Joey)
- Going to Hobby Lobby with Gia to get ribbon for matching bows for her and Caroline.
- Selling our bench and meeting the ladies who had daughters with severe disabilities.
- Bobby and I making beef stroganoff.

27 Week Caroline Update

This whole process of our daughter's condition has been a roller coaster of emotions.  We feel hopeful one moment, helpless the next.  Confident in the Lord's will, then questioning what His purpose is in all of this.  Completely encouraged by the gifts and encouragement of others, and completely in the dark with all the doctors involved in this case.  Thankfully, the Lord has allowed one of us to be strong with godly perspective while the other struggles, and I'm even more in love with my husband each day as we grow through this together.

A lot has happened in the past month, but the short of it is this:  At 22 weeks in Utah, Caroline measured in the 27th percentile.  At 24 weeks in Texas, she measured in the 5th.  This disqualified us from surgery and lead them to believe my placenta might not be working well.  At 26 weeks in Utah, she measured in the 31st percentile.  That kind of weight jump doesn't happen.  A mistake was made.  We could have gone through with the surgery.  But I'm 27 weeks today (3rd trimester), and our window of opportunity is gone.

I feel exhausted even writing about the up-and-down emotions we've experienced since finding this out.  Our doctor has a theory as to how it happened, but nothing has been confirmed and right now we really don't know what happened.  

The next step is figuring out the details of her birth, post surgery and care thereafter.  I have been told that as long as her head and spinal sac don't get too big, I can have a natural delivery.  That was the one bit of good news I received in the past two weeks.  After birth, they will close up the opening within 24 hours and she will, most likely, spend time in the NICU.  I'm struggling with knowing I won't be able to hold my baby for days, but I'm thankful I have a few months to process that knowledge and deal with it.  After that, her care will depend on the severity of her hydrocephalus and her neurological function, along with whether or not the chiari malformation has any affect on her (please pray it doesn't).

As we work through knowing we could have helped our daughter and now can't, I remember the blessings God has graciously given us:

* All of you, reading this, who have prayed for our baby, given us gift cards and letters, speaking words of truth and encouragement and forgiving me specifically when I can't remember things (even though I write them down on my calendar).

* The AMAZING doctor we have to deliver Caroline.  That's a whole other story, but we should not have had access to him (he's extremely busy), and are completely thankful for the connections that lead us to him.  I'm also thankful for another medical professional who has called to check up on us through all of this and will be very involved in our care after Caroline is born.

* Our families, who have sacrificed time and money to care for our children, clean our house, make meals and be here for us as we seek joy in the grief.

* We've had opportunities to share our faith with a lot of people, including every doctor we've come into contact with.  We WILL glorify the Lord in all of this as best we can.

* Seeing our church rally around us and take on extra responsibility (especially in Kids ministry).  It's really been an honor to see.

* The fact that I am not separated from my children for 4 months.  I'm so thankful to be with them every day.

We know God doesn't need this surgery to heal Caroline.  We also know that it may have been his plan all along for her to have special needs.  In either outcome, we know He is good and we know He is sovereign.  Yes, it's very hard.  I don't want to watch my baby suffer.  But He has created this amazing human that He loves so dearly and she is going to show us what strength and joy really mean.  

Please continue to pray for her healing.  God is able and we pray this boldly.  Please also pray for our confidence in Him if He chooses not to heal her.  I have asked God to make her joyful, and would love for you to join me in that one, also.  We are so very thankful for you all!