We have been doing a lot of this — sister cuddles, family naps, hunkering down and resting. Gwendolyn is doing remarkably well. She is still weak and tired and will be for some time as her body recovers from the stress of the last 18 days in the hospital — we all are. But we are so filled with gratitude. In fact, over the last few weeks and when stress is high Bill and I often make lists (either mentally or verbally) of all the good in our lives. It is so important to remember. And we have so much to be grateful for.

Doctors/Respiratory Therapists/Nurses. Put bluntly, all of them saved Gwendolyn's life — multiple times. We can't even begin to express our gratitude for the gift of more time with our amazing little girl. There are truly no words. And we know how extremely fortunate we are to find ourselves in such a warm, supportive environment at Santa Barbara Cottage Hospital when we are there. We are also so grateful for Gwendolyn's pediatrician and pulmonologist who checked in daily and helped us navigate this scary new road.

Friends, family, and incredible strangers. Knowing that Gwendolyn has touched so many lives is humbling and we have been so moved by the outpouring of love for her. To know so many have been keeping our little warrior in their thoughts and prayers means so much. The kindness, generosity, and encouragement fills our hearts and truly lifted us up. We have read each email and comment and were completely blown away by all the photos people shared on Facebook in support of her. We are still opening and showing Gwendolyn all the beautiful cards and thoughtful gifts — and each one makes her tap and give princess eyes of approval and appreciation.

Dinners. Staying nourished has been the last thing on our minds but when we don't take care of ourselves the stress soon catches up. Our friend, Daalia, started a “meal train” to take preparing dinners off of our plate and in one day people selflessly signed up for every day for the next two months! This was and still is such an immediate and enormous help. It meant Bill could eat something healthy before returning to the hospital each night and dinner was ready for me when I got home each evening so I could nurse Eleanora and decompress. And now that we are home, these wonderful meals are allowing us to eat together as a family before starting the night routine of breathing treatments and trying to convince a 5-week-old that night sleep is a good thing wink

Caring for Eleanora. Having a newborn in the PICU with us was not an option but when all of this first started we received immediate offers to help with Eleanora. Friends often say they wish they could help with Gwendolyn's care so helping with Eleanora is something they can do. We so, so appreciate the willingness to literally drop everything. Friends came in the middle of the night, in the midst of days with their family, and with little to no guidance as we rushed to the hospital following Gwendolyn's severe emergency episodes. Once we got into a regular routine, Gramma and our friends/Gwendolyn's awesome nurses, Evelyn and Alby, dropped everything and spent all day with Eleanora (from 9 am until 7pm) so I could spend that time with Gwendolyn and Bill could try to get some sleep before returning to the hospital. Being away from our brand new baby was not what we planned but we had peace of mind knowing she was in loving hands.

Children/School. Our family at Washington Elementary School, Gwendolyn's school, has been amazing. Her awesome first grade class wrote her “get well” cards and the office created a drop-box as a way for families in all grades to leave things for us and we hope creating cards was a positive way for all the children to process the tangible worry the school was feeling. Every few days Gwendolyn's teacher or Nurse Tina would stop by with an overflowing delivery and these deliveries brought so much encouragement to our little girl. There were days she was feeling pretty down but hearing there was a Wildcat delivery always brightened her spirits. And we were all so humbled to receive handmade cards from other children across the world and from schools in New York and Kansas — she wants to read each one multiple times.

Resources. We always have incredible support from the list of Gwendolyn's support resources. But when hospitalized and stress is high, it is so reassuring when every one of them reaches out, gets creative, and makes sure we don't have to worry about any changes to services we rely on on a daily basis.

Sweet baby snuggles. It is healing and empowering to hold Eleanora closely, soak in her baby scent, and be able to comfort her so easily. We wish it were this simple to be able to ease all that Gwendolyn has to go through. So even though she's blissfully unaware of the stress, sweet little Eleanora helped by healing our aching hearts.

Partnership. Bill and I are a good team and we know we're extremely fortunate to have one another through all of this. We both immediately go into divide and conquer mode and will do whatever is needed to make sure our girls are well cared for. I am so grateful Bill is such an amazing caregiver, keeping Gwendolyn feeling safe, doing all of her breathing treatments, and spending every night with her in the hospital. Knowing Gwendolyn was happy having “slumber parties” with him each night allowed me to be present with Eleanora because she needed me too.

And, of course, Gwendolyn. We are so beyond grateful for our amazing Gwendolyn. For her resilience and strength and her courage. Her patience and willingness to trust. We are once again inspired by the incredible little person she is and how she responds to all that she must face. Through her we gain real perspective.  

PS — This is our second family photo. Taken as we were busitng out of the hospital. Here's to a million more!