grace led in life

It's been a little over 3 weeks since we returned from our trip to Philadelphia for Isla to consult with doctors at CHOP - Children's Hospital of Philadelphia.

It feels like these three weeks have flown by!
We have had a lot to process, talk through, and decide...
That time in Philly was not easy, but truly continued to show us how faithful God is and his leading for Isla's life. Her life is precious...we left with hope!
Each doctor was so kind, really listened, really took time to learn about Isla, and worked as a team together to try to help our girl. We couldn't have asked for a better week of consulting/imaging.
Our prayer was for HOPE for our girl...God answered that prayer!
We really felt like we were joining a "family" at CHOP.
Dr. Campbell is the lead doctor on Isla's team. He was honest that Isla's condition is rare, unusual, and severe...but he said the words we were hoping for..."to not do anything for her is not an option".
While treatment cannot guarantee long life...not trying means she would lose her life, very soon.  

During these three weeks we have been waiting to hear from the doctors on a treatment plan for Isla, communicating with other families that are experiencing a similar journey, and just trying to "be still" in our days as a family.


We are seeing more sun these days...woohoo! So unless it is raining hard, we are usually out for a walk, park play in our neighborhood, or bike rides near home.
It is crucial that Isla stay healthy - so we continue being very cautious of going out in public and stick close to home for Isla. Her tiny lungs cannot handle getting a cold or worse, pneumonia.
There is still so much of that circulating around...so we're embracing the cautious life!
MIRACLE: The doctors were amazed that Isla is breathing well right now. They said that babies with her condition (how small her lungs are) would usually have a tracheostomy tube and ventilator by this point. Isla does not have one...nor is it urgent she get one at this point. Praise the LORD!
We feel another miracle is that Isla's doctor is Dr. Campbell, how quickly we had the consult appointments to get to see him at CHOP, and how quickly we are going for Isla's first surgery. He is an amazing doctor!!!!! He specializes in rare diagnosis - He said that the last time he has had a patient like Isla/done the specific surgery she will need, is over 2-3 years ago...and he is doing hundreds of VEPTR placements each year and seeing those patients all the time - so for us to be able to see him and have him caring for Isla is incredible! We believe he is the best doctor in the world for Isla's condition.
G O D   K N O W S ...
We are so grateful for the families we have connected with, whose journeys are similar to Isla's.
They have been so kind and informative. They have given great wisdom and shared of the realities of what Isla will be facing. They have given great detail in many areas of what may occur and how to handle certain situations. It has been encouraging to have a community to connect with.

We will leave on April 24th for Philadelphia. The next day, the 25th, Isla will be having an Infantile Pulmonary Function Test. This will show the doctors a "baseline" of how Isla's lungs are functioning and their capacity prior to surgery.
On May 2nd Isla will be having her first surgery. Dr. Campbell and 5 other doctors will be placing a VEPTR in her ride side ribs next to her spine. She will be hospitalized for 1-2 weeks. The surgery is called a "V Osteotomy Expansion Throacoplasty". They will be cutting a horizontal "V" shape into her ribs in her back (smallest part of the "v" by her vertebrae). Pulling back on the inner ribs/bone of the "v" and placing a Vertical Expandable Prosthetic Titanium Rib) in to keep her ribs separated and in place. The goal of this VEPTR placement, is to create more room for her lungs to grow new tissue and be able to support her body. They don't just want her current lung to expand more, but for new lung tissue to grow. It will be a slow growing process. They will be starting with the right side and will do the surgery again for her left side 3 months after the first surgery. It is going to be very difficult. Many families who have been through this journey have said that on a scale of 1-10 in intensity, these surgeries are a 10.
Pain management is crucial after surgery. Infection can be very common...so we are praying Isla heals very well. Living far away from the hospital makes us a bit nervous, but we know to ask many questions and know they will prepare us as best they can for Isla's recovery at home.

We have been busy finalizing details of that trip.
Thankful details are coming together!
We continue to learn as much as we can to prep for Isla.
We appreciate your prayers in all details and for our girl!
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These days have been filled with so much JOY getting to watch God do miracles in Isla's life, seeing her blossom in so many ways and seeing Zeke grow as a big brother and grow in who God has made him to be. Going through hard things definitely changes life's perspective...and for that, we are grateful.
Much to be thankful for.
The weight of everything is certainly difficult.
Getting to spend time together is the best "medicine". God has been so good to give us so much peace through the days, but it does not mean we do not struggle.
In the learning, gaining wisdom, and sorting out details, reality can feel very heavy.
We strive to daily focus our attention on the truth of God's Word and
remember where our strength comes from.
"And the LORD will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail."
Isaiah 58:11

"I will instruct you and teach you in the way you should go; I will counsel you with my loving eye on you."
Psalm 32:8

We feel like our daily goal is: "Rejoice always, pray without ceasing, and give thanks in all circumstances"
1 Thessalonians 5:16-18

We definitely struggle to choose these things sometimes, yet God is so faithful to love us through it.
Because of his grace and mercy.

"Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; Great is your faithfulness." Lamentations 3:22-23

Our sweet social worker, Anna, sent us this paragraph...and it perfectly explains our hearts...the journey...
Isla's story is already so beautiful - the way the Lord knit her so perfectly together in her mother's womb, the way he orchestrated her adoption into your family just in the perfect time of her life, how he has blessed you with the flexibility and resources to take care of her needs.  None of these blessings means that it doesn't also come at significant cost or inconvenience or emotional upheaval at times - it clearly does!  But in the midst of the challenges, the Lord's protection over Isla's life and body is evident, and his glory in the midst of this is worth it.  I pray that you would never feel so bogged down in the difficulty that you lose sight of what He is doing.
That is exactly what Justin and I have discussed so often - the journey can feel heavy. But, there is no missing what God has done. Every detail of his plan is perfect and we see his fingerprints over the entire journey...even back to the day we knew we were starting the adoption process again.
H E    I S    F A I T H F U L
All glory to him ❤
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We had a huge blessing of having family photos taken by the sweet and talented Jeanna Rice Photography
(click on her name above for link ^^^)
Jeanna is an amazing photographer and also donates her time and talent to adoptive families, through Red Thread Sessions
Jeanna was so kind, really cared to know our family story, and we feel incredibly blessed to have these photos! If you are in WA and looking for a photographer, you need to contact her!

These two...oh my heart.