Slipping Backward, Moving Forward

It’s been a tough week. Last Sunday Caili’s breathing began to get more labored, to the point that doctors were beginning to fear that she was nearing the end of her energy reserve. At that point she was still on the high-flow nasal cannula, but we continued to fear another backward slide. Last Monday they reverted back to CPAP, which Caili hates due to the mask she has to wear, and the pressure of the prongs that are strapped against her nose. It’s far from comfortable.

Because of Caili’s age and her pulmonary hypertension, it’s more critical than ever that her blood stay well oxygenated. They used to accept levels in the high 80’s or low 90’s, fine for premature infant not yet supposed to be out in the world (we’re told that the mother has used much of the oxygen in the blood that reaches a baby in utero, and thus premature infants are used to lower saturations), but that’s no longer acceptable now that she’s essentially a 5 week old. So, Caili’s target saturation is now 95%. Note that a healthy term infant as well as an adult saturates at or near 100% all day long.

So, when Caili was switched back to CPAP on Monday all was good for awhile. She was saturating well, and her breathing was more relaxed. But on Tuesday evening Caili once again came unraveled. Now matter how much oxygen they gave her, she couldn’t reach her target saturation. As I headed to the hospital, the doctors asked Lauren to leave Caili’s room so they could intubate her. We were utterly devastated. Going back on the vent at this late stage seemed impossible to imagine. We were supposed to be on the track home by now.

I met Lauren in the lounge, and we began to prepare ourselves to see our daughter intubated yet again. Luckily, our preparations were unnecessary. Caili’s doctor sought us out to deliver good news; Caili’s nurse had found a position that seemed to be working for her, and she was still on CPAP. She was breathing 100% oxygen (which in itself is not a good thing), but her oxygen saturation was sitting at 95% as it needed to be. She had avoided intubation, at least for now.

We sat beside her crib as she slept, entranced by her monitor, doing our best to will the oxygen saturation to stay at 95%, or, dare we hope, rise higher. We left at 10 feeling that intubation was inevitable. We’d been through this before; in December we had left for home with her on CPAP but teetering on the edge of intubation, and that night had ended with her on the vent. We expected a call in the middle of the night reporting her intubation. There was no call. Our ritual call immediately upon awakening on Wednesday morning revealed that she was still hanging in on CPAP, although she was still on the ragged edge. Our little girl is determined. Later that morning they decided that the cause for this extreme downward slide was potentially a bad reaction to a drug they had administered to help with her pulmonary hypertension, and the drug was discontinued. She continued to hang in there.

By Wednesday night she was improving. They were able to slowly reduce the amount of oxygen she was breathing. The specter of intubation vacated, but our stress remained. The amount of oxygen she was breathing was still too high, she was still on CPAP, and answers on why she had slipped backward from mid January were still not to be had. Her pulmonary hypertension alone doesn’t explain this backwards slide. She doesn’t seem to have a cold, which had been our fear. On Thursday morning the doctors tried another test that might show aspiration—still the leading theory of the cause of her difficulties. The test showed nothing abnormal. It was time to regroup.

The pulmonary specialist came in to see her again on Thursday afternoon. He recommended another test that would more definitively determine the level of her reflux. However, this test is not performed at Jefferson. She would need to make a trip south—to the DuPont Children’s Hospital in Wilmington, Delaware. The other doctors agreed that this was the best next step—the best way to hopefully get answers, and get back on a track that would lead to taking Caili home.

The process moved quickly, and on Saturday we learned that Caili will leave Jefferson for the first time on this morning, via ambulance, and will travel to Wilmington. As we’ve seen when they’ve taken her out of her room for various tests, moving her is no easy task—it requires a ton of equipment and at least three people to accompany her. Seeing her moved is a stark reminder of how fragile she still is. We are more than a little anxious about a drive 45 minutes south.

Also, we are extremely sad to leave Jefferson, which has truly become our home away from home. The doctors, nurses, respiratory therapists and the many other people that have been involved in her care have been absolutely amazing. They have given our daughter life, and provided us with hope, console, inspiration and friendship. From the moment that we first saw a baby that we knew go home after a long stay in the NICU, we dreamed of that walk down the hall with Caili in a stroller, with the doctors and nurses responsible for delivering that joyous moment sadly but excitedly congratulating us and wishing us well. Leaving in an ambulance is not what we imagined. We’re sorry that all those responsible for her progress to date may not get to participate in that day when we finally do take her home.

It is possible that Caili will go back to Jefferson after the testing is complete, but at this point it seems more likely that the remainder of her hospitalization will be at DuPont. And that certainly isn’t bad—DuPont’s NICU is apparently brand spanking new, all the rooms are private and parents can visit 24 hours a day. No longer will the end of visiting hours force us to leave Caili crying, or worse yet struggling to breathe.

I do worry about Lauren—I fear she’ll never leave Caili’s side and will try to live without sleep. But she will be able to sleep close by—she’s planning to live in the Ronald McDonald house that’s across the street from the hospital. Unfortunately I’ll have less time with Lauren and Caili—Wilmington is at least twice as far away from our house as is Jefferson. But we need answers, and everyone is hopeful that the tests they can run at DuPont will provide them. Hopefully this next step in Caili’s journey will be a short stint before she finally comes home to us.

If you would, think of Caili this morning on her first excursion, and join us in praying that this will be a positive step toward bringing our little angel home.