The Next Chapter

The Next Chapter Begins....Bright eyes

Loves her tummy

Well we are grateful to report Cora recovered well from her G-tube surgery. God even answered some specific requests when it came to her expected recovery needs. Her team said she was likely to come back needing breathing tube support and additional drugs to help her recover from the anesthesia effects- both of which we prayed during her procedure would not be necessary and both she did not need! Additionally, her nasal feeding tube had been removed overnight in anticipation for her surgery and as I held her before the procedure, Colin & I heard the clearest swallow we've ever heard! It just felt like a whisper of hope that we will not always be where we are in this moment with all its challenge. It was so difficult to let her undergo that semi-permanent procedure and watch your child be carried into an operating room. Certainly we could console ourselves with reminders of its necessity, but we remembered that she is God's child who He ordained to put in our charge. Our true consolation was knowing that He is ultimately over her care and we her stewards, not to mention the comfort of knowing He loves her more than we ever could! We also did a scope of her lungs while she was already under anesthesia and found her lung condition of prematurity is indeed pretty severe and is the reason (combined with her lack of swallow) she's likely had trouble with so much secretions/breathing management variation. Her pulmonologists (lung doctors) have prescribed a regimen to help her as she outgrows this condition over an unknown amount of time. They were impressed with how low her O2 requirement had become, given her lung immaturity. Another evidence of God's grace in our little fighter- He is so present in the struggle with us! 

 Getting ready for surgery

 waking up classic anesthesia wake-up.. :) IYKYK

 Sibling Learning Session

    In the days that followed, she returned to less oxygen, had her feeding tube replaced, and began to heal her abdomen. As she continued to look well, the medical team began to prepare us for her her discharge home. This was both so exciting and daunting- thinking about all her home care would entail. Days were full of check off sheets, equipment delivery, phone calls for follow-up appointments with (literally) 10 different specialties and therapies, and lots of prayer. Our team was great in making the process as smooth as possible and has continue to see us through her transition.

 "I'm going home???"

 Her loving nursing team  

         As Independence Day Weekend came, we celebrated our last few festivities as a family of 5, complete with our local parade with friends, and Denver extended family gathering to celebrate. Monday, July 7th we welcomed our kiddo home on Day 121 to her waiting sisters. It was full of complex emotions, leaving with a fragile not-so-newborn in some ways, but beginning a newborn at home phase again.

 PPB Rodeo Parade

 Our fave holiday   

          Her 1st week had its little hiccups as she adjusted physically to her new environment and we adapted our "practiced" newborn transition from 3 other babies to a baby who needs not to be nursed and rocked to sleep but monitored, suctioned, medicated, engaged and planned for in her many needs. I'm feeling these days like a full-time case manager/nurse Momma, but we have started to find our rhythms, trading night duty and learning how to move and go places with her equipment set-up. By God's strengthening (daily and sometimes hourly-), our daily rhythm (especially now that Colin's back to (lighter) days at work this last week), has been less challenging than anticipated. I dare say, I feel like the addition of easygoing Laurel after the most uncomplicated birth process was more difficult to manage. Seems true what they say about those 4th babies!

 Last photo w/ NICU grad!

     Happy Indy with her new babe!

 Babies on babies 

 

    Her days continue to be full of supporting her medically while loving on her like any other baby. This is far from easy. We see how she's different. We have no idea what things she'll grow out of of or if some issues will persist or new ones arise. We dwell on the words of Jesus in Matthew 6 that says:

"“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[e]?

28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

These words are invaluably precious from the Sheperd of our souls. How He cares for His own, and comes into just where we're at. Recently, when my heart was tempted to worry and fear this week, the Holy Spirit gave me this image in my mind of when I'm asking my oldest daughter to get ready to go somewhere and have given her some instruction like "Put on your shoes". Then she begins to ask, "Where are we going?...Why?... When can we eat lunch?...What if it rains.. I don't want to...". Certainly, she owes me just to obey, but instead my response of heart is, "You can trust me. You don't need to worry about it. I'll get us there. Just put on your shoes." Likewise,  "(my) heavenly Father knows that ( I) need these things"... I hear Him asking me, "Don't you trust me? You don't need to know what's next. All I've asked is to put on your shoes." 

    And so that's what we're doing! We're living in dependence on Him, figuratively "putting on our shoes" each day and attempting to live in faithfulness and excellence to what He's called us to in this season. We continue to be so grateful for family & friend support, from babysitting to grandparent weekends & random meals/gift cards that appear. Surely, He will continue to prepare and supply all our needs according to the riches in glory in Christ Jesus (Philippians 4:19). For "The Lord is (our) Sheperd; (We) shall not want". (Ps 23:1).

 Indy turned 3! (7/3- Her golden Bday!) 

mom's new carry set-up #alwaysrucking

 "So I live here huh?"

 

Prayers

- Please keep our upcoming PCS move in prayer. PRAISE!- Colin was recently promoted and we had our move pushed back to October. We are excited for the transition but need His provision for the process. Please pray for: tenants for our CO home, a new place to rent in a timely manner, our physical move process, Cora's 1st plane ride,  and ALSO- the provision of a new community. We are wrestling with leaving our beloved church family, as well as family in Denver and the Springs in general. We know God can provide just as much of a home in NC. Pray for a church home first of all! Also, for transition of medical care, a new physical community, & a new season of family with my brother/SIL and soon-to-be newest niece in Greensboro.

- Prayers for Mom & kiddos while Dad is on travel several weeks in Aug & Sep. 

-Cora's health: Pray for weight gain for Cora. She has to be a certain weight to get her nasal tube removed and begin using her abdominal port. Pray her weight gain resumes at home as steady as it was in the hospital. Pray that her oral/physical therapies would help her progress toward swallowing/eating eventually. Praise that her respiratory support/ meds/ treatments etc. has been adequate and her oxygen needs would continue to decrease. 

-Prayers that we would continue to lean on Him every day, find Him more than adequate, see fruit from our time in NICU, & glorify Him with this challenge. 

            That said, thanks so much for walking through this with us! I will likely pause any updates until we move as we focus on family and this transition, but welcome your reaching out with love & support - or sharing in any way. May God supply all your needs in Jesus!

Lots of Love in Jesus,

The Christs