A Christmas Dream Come True

The past week was frustrating and gave us no sign of the amazing progress that was to come. Last Wednesday’s extubation and the subsequent lung collapse was hard on Caili, and the recovery was slower than we had hoped it would be. Late last week and into this weekend it seemed that they would take most of the day to get her on slightly better ventilator settings and then something would go wrong—her tube would get pushed in too far, she’d get upset, etc., and they’d have to increase her support such that all the progress was lost. It felt like we were getting nowhere fast.

It wasn’t until Sunday that Caili was back to the same ventilator settings that she had been on before they extubated last Wednesday, which weren't really all that great. There did not seem to be much cause for optimism. The doctors were saying her lungs were worse then before all this, and even then they weren’t great. They wouldn't--and in all truth couldn't--predict when she might again be able to breath without the aid of a ventilator. We were beginning to fear that Caili was heading down a path we hadn’t yet had to consider, one involving long-term ventilation. Thankfully, it seems that Caili had different plans…

Yesterday (Christmas Eve) Caili’s strength really began to shine through. They had her much less sedated, yet she was still comfortable, and showing her feistiness. They even started feeding her again, via a new tube which goes past her stomach to her jejunum (brought in from DuPont Children's Hospital just for Caili).

I was at home sick wishing I could be with Caili and Lauren, and every call from Lauren reported further weaning of the ventilator settings. We headed off to Lauren’s brother and sister-in-law’s house last night (Christmas Eve) to celebrate with her family, and both times when we checked in the nurse reported progress. Caili was again fighting, breathing, getting better.

Today (Christmas Day) I felt better (but still wore a mask in Caili’s room to be safe), and we both headed to the NICU at 10 AM, Christmas tree and gifts in tow, to celebrate Caili’s first Christmas. Her progress had continued, and we were greeted with ventilator settings that were nice and low. Caili looked good—like her beautiful, happy self in fact. We were again a happy, hopeful family. Then the doctor came by, and bowled us over with her news; if Caili’s next x-ray looked good, they were going to give extubation a try. Hope tinged with fear washed over us. Could we be about to receive a Christmas gift from our daughter and her doctors that just a few days ago seemed impossible?

The x-ray did look good, and extubate they did. She was again back on CPAP, which looks like an elephant trunk, and she was flourishing. She seemed ready this time, and set about the task of breathing like an old pro. We beamed with joy as we tried to ignore the fear that she might not yet have the strength to keep going, and that this might again result in a step backward. But Caili’s will quickly pushed that fear from our minds.

When we left at 10 tonight she was still doing great—they were weaning her oxygen, and she was breathing with calm, deep breaths, and occasionally crying. It was so nice to hear her cry—she can’t be heard on the ventilator since the intubation tube splits her vocal cords. But sadly her cries sound hoarse, no doubt a result of 2+ weeks of having a tube down her throat. Once comforted, she truly seems happy with herself. We are so proud and so excited.

We know she still might not have the strength to keep breathing on her own, but we're very hopeful that she will, and we should have a pretty clear indication of whether or not she can within the next several days. If so, we can hopefully hold her again soon (the doctors recommended against holding her while she was on the jet), and if all goes very well, she may start eating on her own again, but in the meantime she is again getting all her nutrition via her feeding tube, and no longer requires IV nutrition, which of course is a great step forward.

See the slide show to the right (or here) for pictures of our glorious day. Thank you all so much for your prayers. Our Christmas dream did come true, and we’re very hopeful for what the New Year will bring.

Merry Christmas to you all!