#NewCora

What a month it's been!

My apologies that it has indeed been a month, but when you hear about ours, you'll excuse the delay! We started this month by marking what was supposed to be her due date and discussing with her team what developments they'd be looking for to consider her eventual home accommodations of care. The first 2 weeks were the continued rollercoaster of good days and bad. We have been sensitized to almost expect a hard day if we had a calm day at all, and those 2 weeks were the epitome of that! Cora's breathing difficulties continued as they adjusted medication doses and feeding amounts while trying to evaluate her growth, even as she did make good progress in her weight.

About 2 weeks ago we started really praying about accepting whatever future God has planned for her, no matter how complex her needs or scary, overwhelming, or uncertain it might appear. We sought God throughout the week with that dual prayer of "Heal her weaknesses oh God!" & "strengthen us to surrender and rest in You and whatever outcomes You have planned". Waiting with an active patience of prayer and striving to trust while He kept us in His care has become a new muscle we've had to learn to use. Over and over again we find that if we wake up with anxiety, fear, frustration, anger, whatever it may be, we know we are not hoping in Him. If our hope is in anything- her recovery, a sense of control/comfort, having it "together" with the kids, feeling in tune with each other as spouses, a future we can picture- anything else!- we WILL live on shaky ground. But if it's in Him, that the foundation is secure and we feel that in our experience of peace, even on her toughest days. It will continue to be a daily offering and discipline, but gratefully one He leads us in.

Speaking of which....Jeremiah 17:5-8 says:

This is what the Lord says: “Cursed is the one who trusts in man, who draws strength from mere flesh and whose heart turns away from the Lord. That person will be like a bush in the wastelands. They will not see prosperity when it comes. They will dwell in the parched places of the deserts, in a salt land where no one lives.

“But blessed is the one who trusts in the Lord, whose confidence is in Him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”

I encourage you to go read the whole chapter if you haven't in awhile. This is where our strength comes from.

As I said, Cora continued to struggle. We still had some wonderful family moments. Finally soaking up some sunshine in the very wet spring we've had. Beautiful hikes, family outings, simple meals, and even a surprise visit from my 20 year best friend Cassia. God's abundance (Cora's MN meaning) in the form of support, simple joys, & His peace continued to surround us. One afternoon, Aria listened to me mutter a prayer about her baby sister as we walked, something about .."what can else can we do about Cora?..". She replied "Momma, I think we're just hafta take care of her best we can and love her as much as we can!". And that was that.

About 2 weeks ago though, Cora forced some adjustments when after trying to change her feeding, she had several pretty bad days in a row of apnea (stopping breathing). It felt like we lost ground in a big way. But this caused the team to take a new approach and see if her issues were coming from more than reflux. They did a full infection and seizure work-up (see photo below), and when these came back negative, placed the tube feeding deeper in her GI tract. With her smaller size and lower muscle tone, this has turned out to really help and "prove" that her apnea was related to reflux from her stomach vs something else. While she still can not suck or swallow, she has greater strength all around now, and can cough to clear her airway. With being a bit older & not working on catching her breath throughout the day, she has become far more alert & interactive. It really feels like she's been born in the last week and has woken up to the world! The staff has called her "New Cora" and more than one expressed their pleasant surprise at her having turned a corner. It's been slow progress and we know how far we have to go, but we are so grateful that there may be an end to our NICU journey before the next challenge of home with a baby with special accommodations. This last week she had her first day of therapy! After bringing up some observations to the PT's attention, he brought in a mat & we got to evaluate what she could really do when rested! It was so fun and she slept like a rock after. We hope that she may be able to come home in a month's time.

1st Family Photo!

Those double baby NICU dinner dates (yes, you CAN drink wine in the NICU!)

Mother's Day family Hike at GoG

meeting Auntie Sia

...more sister love <3

Prayers....

+ Prayers about her feeding accommodations. She'll need both a surgical feeding tube placed and the current tube to feed at home while we start therapies to help her swallow. Pray for our discernment, trust in her medical team, her tolerance & recovery of the anesthesia/procedure/healing and decision making about types.

+ Continue to pray that we can have clear discernment when it comes to timing of bringing her home.

+ Prayers she gets stronger at clearing her airway and her apnea continues to decrease.

+ Pray she is able to develop a suck & swallow.

+ Pray she continues to gain weight, tone, & strength.

+ Pray for our endurance, family life, wisdom, & rest in God, & our witness in the NICU, that each & all would hear of Jesus through us, & some would come to put their hope & trust in Him as Lord & Savior.

+ Praise God for His shaping of us and proving His care and goodness through this trial over and over. Praise for continued family & friend support. Praise for the witnessing opportunities we've had.

Visiting Navy friends