Two Steps Back
So much has happened since our last update. We've felt the highs of wonderful progress and the lows of discouraging set backs. All coming in persistent waves that keep us occupied, exhausted, and unable to sit down and write out our thoughts.
People often refer to NICU life as a roller coaster. But aren’t roller coasters supposed to be fun? I suppose the analogy resonates with me though, since I’m one of those people who don't enjoy roller coaster rides. My husband learned this early in our relationship and let’s just say I did not have fun the first (and last) time we rode a roller coaster together.
The week after our last update was hard to keep up with. Jack had successfully moved off the CPAP machine to hi-flow oxygen with a nasal cannula and tolerated steadily decreasing pressure. That same week he crossed the 4lb mark and transitioned to an open NICU crib. He also began to show the rooting reflex, a wonderful developmental sign, and started learning how to breastfeed. His progress was fast and amazing. We were thrilled.
At the same time, the staff at Loma Linda let us know that our insurance was pushing hard to have Jack transferred to an in-network hospital. We knew a transfer would present challenges for him and for us, but ultimately if his doctors felt he was stable and the risk was low we would agree to it. It was decided that he would be transferred to Children's Hospital Los Angeles (CHLA). Every day that week the word from the doctor was “not today, probably tomorrow.” We scrambled to pack up our apartment and sent the girls to stay with Grandma and Grandpa. Meanwhile we were poised on the launchpad as I worked with Jack on breastfeeding, a taxing albeit encouraging process with a preemie who is learning to suck, swallow and breathe all at the same time. Finally, that weekend we got the call for parental consent and then waited two more days for the go-call from CHLA. Adding to the craziness, in those last few days we were rear-ended driving John’s parent’s car and I developed a severe case of mastitis.
On Sunday, February 17, while John was at the pharmacy picking up medication for me, he got the call that the helicopter was on the way and Jack would be boarded in about 30-45 minutes. It was time. John went to the hospital to fly with Jack on the helicopter while the girls and I, with the help of my amazing in-laws and dear friends the Carrs, loaded our essentials and whatever else we could fit into our vehicles. With a 102 fever and full body aches I was in no condition to drive so we formulated a plan to get the girls home and me to CHLA where Jack was about to be admitted.
The weeks since the transfer have been chaotic and distressing for our family as we've attempted to put our house back together and adjust to a new leg of this journey. You might expect that moving home would have been a relief for us. But it's been very difficult. It feels like we're starting all over again. Getting things settled at home while balancing John going back to work and introducing a new routine for childcare and NICU visits that now include a 1.5 - 2 hour round trip drive has been hard. We're also starting over with a new hospital and a new medical team that haven't had the benefit of caring for Jack in his first 12 weeks.
The transfer turned out to be very stressful for Jack and he needed more respiratory help shortly after he arrived at CHLA. By the second day he was back on a ventilator getting significant support and unfortunately not much has changed since then. Jack has been at CHLA now for almost 4 weeks. We're thankful that he's been growing steadily and is generally very stable. He is currently 6 lbs 14oz and is rocking a great double chin. His hair is getting longer and a bit curly. He looks like a baby who should be home with his family. But he has made no progress as far as weaning respiratory support. In fact, he has had to have increases in support twice.
We were hoping the transfer would be a good thing but it has turned out to be a bad thing that will likely cost us many more weeks in the NICU. Had Jack been allowed to stay at Loma Linda it's likely he would be coming home close to his due date this Friday, March 15. Ironically, the insurance wanted to transfer him to save money but it's going to end up costing them much more.
Jack has settled into his new routine at CHLA and seems comfortable but he's having a difficult time recovering the respiratory ground he lost. The team was hoping to start weaning the ventilator settings this week but his labs indicate he is still not ready. One of the doctors told me he could take four more weeks to successfully move off the ventilator. That is the first big hurdle he has to clear in order to come home. The first hurdle for the second time. He's not allowed to take any milk by mouth while he is on the ventilator as there is too great a risk for aspiration. So once he is able to breathe on his own he will face the second big hurdle of learning to take a full feed by mouth (breastfeeding and/or bottle).
Friends, we are weary. We are confident in our Lord's sovereignty and His goodness. We know this transfer and the resulting set back were not outside of His good plan for our family. We know He uses bad things for His glory and our good. We feel like the bruised reed, knowing He will not break us; the smoldering wick, knowing He will not snuff us out (Matthew 12:29-20). As Jack looks more and more like a term newborn it feels harder and harder not to scoop him up and bring him home. He just wants to be a baby; held and loved by his family for more than a few hours a day. As the finish line slips just over the horizon it feels as though our legs might give out. In earlier weeks it was so obvious that Jack needed to be in the NICU. He looked so small and sick. He has fought through an extraordinary array of challenges and we've walked in hope-filled sorrow as we've watched the Lord move and provide. We just want to take our baby boy home.
Please pray for us. Many of you have been so faithful to lift us before the throne and we humbly ask you to remain steadfast. Seeing Jack's growth and hearing about his transfer has sparked celebration for many. We appreciate the enthusiasm and are so grateful for the investment. It's a good reminder for us to be amazed at how far he has come. But we're still very much in the middle of this. We need endurance. We need strength. We need our eyes lifted from the tunnel vision of a long dark valley to the great big God above who will continue to work marvelous grace in Jack's story.
- That Jack's lungs will heal and that his muscles will strengthen so he can make progress.
- For wisdom for Jack's medical team regarding his respiratory care and that we will trust their judgement.
- That we will not give-in to anger over having to transfer and the resulting domino effect.
- For Jack's eyes. His R.O.P. has advanced to stage two. We are anxious to see his eyes protected by weaning respiratory support.
- That our girls will be resilient and flexible - since we’re home they want life to be normal but it is far from normal still - and that our parenting will be gracious and consistent.
- That we would be filled with grace in spite of our discouragement.
- For job and financial concerns. Our insurance is through The Master's University where John has taught for many years. Last week John was laid-off, effective at the end of his contract in June. We're not sure what our next steps will be.
For those of you who live locally, we wish you could come visit but CHLA has strict visitor limitations during flu season and we're restricted to a very small list of immediate family members only. Thank you for understanding!
Thank you for all your many prayers, kind words, notes, meals, and countless other ways you have encouraged us. We are truly grateful.
When I fear my faith will fail, Christ will hold me fast; When the tempter would prevail, He will hold me fast. I could never keep my hold through life's fearful path; For my love is often cold; He must hold me fast.
He will hold me fast, He will hold me fast; For my Savior loves me so, He will hold me fast.
Those He saves are His delight, Christ will hold me fast; Precious in His holy sight, He will hold me fast. He'll not let my soul be lost; His promises shall last; Bought by Him at such a cost, He will hold me fast.
For my life He bled and died, Christ will hold me fast; Justice has been satisfied; He will hold me fast. Raised with Him to endless life, He will hold me fast ‘Till our faith is turned to sight, When He comes at last!