Not long after Jack was born our oldest daughter, Ella (5), started playing a game where she would create a little enclosed area for one of her stuffed animals and invite us to come "visit her baby who was born too early."
This morning as I was getting ready to go to work our youngest daughter, Rose (3), said she wanted to give me a hug and a kiss because she was "leaving for the hospital to see her baby." A few minutes later she was throwing her baby doll diaper bag over her shoulder, something she has seen Lisa do every day for the last several months, and pretending to get ready to go.
We're so grateful for our girls. From the very beginning of our journey with Jack they've been flexible, resilient and joyful. Even on the hard days it's been sweet to see their precious little minds process what our family is going through. They're taking it all in. Whenever we leave for the hospital they'll usually pass along messages for their brother: "Tell Jack... Jesus loves you!... and we love you!... and everyone is praying for you!"
It's been 5 months since Ella and Rose have seen Jack. He was born just before the hospital restricted visitors under 18 years of age due to flu season. They miss him, and you can imagine that from their perspective it seems as though Jack has been in the hospital for a very, very long time. Just the other day Rose asked Lisa, "Mommy, how old will I be when Jack comes home?"
We're thankful that the girls did get to see Jack a few times at Loma Linda in the first week or so after he was born. We were a little nervous that all the tubes and monitors would scare them, but they saw right through it all to the beautiful baby boy they had been so excited to meet. They gently touched him and softly sang to him; some of the most beautiful moments so far on this difficult road. Ella in particular really took her protective big sister role seriously, asking what all the numbers meant and letting us all know what she thought Jack needed as she would gently place one hand on his tiny head and her other hand at his feet. Here's a video of the last time the girls were able to visit about 5 months ago.
Jack has changed a lot in the months since and so have Ella and Rose. Tech like FaceTime has been a gift for the girls to see their brother and talk to him but they're anxious for him to come home so they can throw him a party with cake, ice cream, balloons and, of course, a unicorn piñata. In the mean time his medical team encouraged us to record some songs and messages for Jack to listen to in the NICU when we can't be with with him. We bought a little music player/speaker for his crib and recorded a number of songs for it so he can hear our voices regularly. Here's what the girls sent for their brother...
Flu season restrictions have been officially lifted as of May 1 so the girls will finally get to see Jack later this week. It will be so good to be all together as a family again, if only briefly. We can't wait. We'll be sure to post a few pictures here when it happens.
Thank you for your prayers. Jack has turned a corner and made great strides since our last update. The CHLA team were able to steadily wean his vent completely and he’s currently on simple oxygen support via nasal cannula! And there's more encouraging news. Jack's eyes will continue to be monitored, but his last exam showed that his R.O.P has actually improved! His left eye which had been stage two is now back to stage one. This is a remarkable answer to prayer.
We’re taking a running start at the last big hurdle to clear; feeding by mouth. Jack must be able to take a full feed by mouth before he goes home, and he is steadily building endurance to reach that goal. At this point he’s taking about 75% by mouth and slowly increasing. Once he takes 100% consistently he will be one sleep study and car seat test away from coming home! We're getting close!
PLEASE PRAY
- That feeding endurance will grow so that Jack's feeding tube can be removed.
- For Jack's moderate reflux which can lead to aspiration and further setback to his lungs.
- That Jack's eyes continue to improve and heal.
- That we'll be able to bring our baby boy home soon!
Isaiah 55:8-9 - "For My thoughts are not your thoughts, Nor are your ways My ways," says the LORD. "For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts."
