Precious Gabriel

Hard to find words for this. For now, sharing Aaron's beautiful words posted on Facebook:

Dear friends,

Our precious and Mighty Gabriel changed form on Thursday August 27.

He spent a beautiful day outside with us in the sunshine, and in the evening he passed very peacefully in our loving arms.

Gabriel was with us so briefly, but he will be remembered and loved always.

A memorial event to honor him and celebrate his life will be held on Sunday September 6 at 1pm at the Sorenson-Lockwood Funeral Home in Grayling, Michigan.

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Thank you to those who have reached out to us since Thursday. It means so much to us to have your loving words and support.

Our boy is 2 months old!

Happy birthday our love!

He has been very fussy on and off between sleeping, and periods of more work of breathing, and many episodes of lower oxygen levels with that fussiness. It could be the general decline he is on, or colic, or just feeling blue because of the dreary day. He's an infant, and will have variable moods. And because of the SMA and his respiratory failure, he will have good and bad days. We are hoping for a good night and a little more of play and games tomorrow.

Baby at the Beach

Friday we were blessed with a beautiful day. Our third visitor of the day was a photographer, who generously shared her time to fill a goal of ours, to have photos of Eleanor and Gabriel and we were able to do so outside in our front lawn. The day we went to the ER originally, Gabriel, Eleanor and Joanna had been outside playing on the grass together. It was so nice to be back there making more memories.

We've been cautious about outside time, but Saturday was so beautiful we wanted to chance it by going to our lake park. Gathered Gabriel onto his wagon, and crossed the yard, crossed the road, and stepped out from the circle of fear and anxiety into the sun.

We had a Baby at the Beach!!

Gabriel slept most of that hour and a half, but he was comfortable. His eyes fluttered open a few times to see his parents, the sky, and the dappled light on the leaves above. Aaron, Jo, and Grandma Lucie breathed in the fresh air, felt the breeze, and relaxed a little. Eleanor came home with her Papa and Bubbie, and then she played and jumped in the water as kids are supposed to do in the summer.

Today, Gabriel had a good afternoon. He had quiet awake time and engaged with his eyes and lifted his eyebrows at mom to show he was interested. He moved his arms more than usual and lightly gripped and moved a little ball; it was slight but more play than we've done before. And he smiled, almost laughed, at the nurse who was wiping his lips and it became a game. Also a first. Warms a mother's heart.

One Week Home

Gabriel turned 8 weeks old yesterday, and today marks our 1 week home. We've been thinking about how much can happen in a circle of the sun.

Gabriel had some morning awake time and some smiles, then a good nap. His Papa played piano-- a jazzy version of "Summertime." Mama got him out of bed to hold twice and near the window for sunset. And because he is a normal baby despite the vent, he still had a bit of a grumpy evening, but a little shorter than other days.

We have adjusted to being home slowly but surely, getting more used to his needs and the schedule of his cares. It's a balance between his care, Eleanor's exuberance and need for us, and our own needs. We've had to have some hard conversations lately. It's not easy. We are thankful for help from family, friends, and neighbors.

Mighty Gabriel's New Digs

Sweet Gabriel has the biggest bedroom in the house: our sunroom. He has walls of windows to light his days, and a ceiling fan to watch. There is a constant hum-puff of the air compressor for white noise, and AC for the hot days; when it cools down we'll just keep the windows open. He loves his fox-mirror from CureSMA, raising his eyebrows at it. Today he made a new friend, smiley-balloon and gave it a big smile right back.

We pictured summer as being outside all day, but have been inside much of it. Yesterday we made our first step of being mobile with the baby and the vent, and rolled ourself to the back door and just outside to enjoy the trees and breeze. Gabriel was wide-eyed and rewarded his parents with smiles. He breathed a bit fast, but some of that could have been excitement. He slept well.

Home!

Thursday marked the end of our hospital stay, 30 days. Packed, organized, and feeling ready with the care we can offer Gabriel at home.

We met with many many people in the three days prior to discharge. We recognize how fast it came together and how much effort was made for us.

We said goodbye to many who helped care for Gabriel and our whole family. We are forever grateful for that care and connection.

We rode home in an ambulance without incident, found home support services waiting for us and entered our home. We breathed in home. We breathed in our family. We breathed in life.

Jo's new motto is "be grateful for each breath." We are grateful for the time we have with Gabriel, each breath he has in his life.

This is a dance, we are not in charge. Gabriel is leading.

Thank you to my brother for support: "you two are listening close. This is what bravery and courage and love is."

Bravery is not the absence of fear. It's being afraid and doing it anyway. Gabriel is doing his part.
We will do our best.

Another Stable Day

Another stable day for Mighty Gabriel. Joy.


We learned more about the machines that help support Gabriel. We also met with our care manager who is moving mountains to get all of this arranged so quickly. She is so skilled, and so caring.
We are so eager to go home, but we want to do it right. We will stay until Thursday to practice then hopefully get home. It's a short time to get all the practice, but we will also have help at home.
Over the past 4 weeks we have had so many kind, helpful, and caring brilliant people help take care of Gabriel. We are so grateful and touched. And in the past week we have also had many of them stop by our room again for social visits, to check in on this little person who has touched their hearts.
We will remember.

Breathing More Comfortably

Gabriel did well on his new vent and mask overnight. His blood carbon dioxide level actually improved (lower) compared to the old ventilator. And more importantly, he looks to be breathing more comfortably.
We are hopeful that we will be able to go home soon. Our care team sprang into action to make calls and arrangements. It was a busy Monday for us, this time with learning about all our new machines and practicing care for Gabriel's needs.

Meanwhile, we talked to Gabriel, held him, and he spent time with Uncle Chris and Aunt Dena. Gabriel will miss them, as they travel back home soon. We will miss them too.

A Week in Review

Thursday Gabriel mostly rested, making 3 stable days on his same settings.
We met with discharge planning folks, and about Home nursing help.

Friday started hopeful. We had at least 8 smart people put their heads together about a tubing interface from the Trilogy vent to Gabriel's current nasal mask which fits. He seemed comfortable, with a few adjustments. But later he had some lower oxygen readings while he was breathing comfortably (we know that working harder can cause a desat, this wasn't it) and he had too much carbon dioxide in his blood, so we had to go back to the old vent.

Saturday was a day of rest for Gabriel and worry for the parents. He had an acute low oxygen episode, due to mucus but he got past it. We worried the rest of the day. We will start chest percussion to help him keep that stuff thin and out of his lungs.

Eleanor came to visit again. She has been visiting her cousins and loves them! They went to the lake cabin and she played in the sun and water, now looking tan and older than a few days ago. Their dog plays fetch with her. We are glad she is having fun.

Today we are working on the plan to get home, and breathing is the number one. Gabriel today got a new mask, which fit better than thought last week. He switched to it and tolerated it well. He seems comfortable. It fits over his nose and between his eyes, so he looks a bit like Darth Vader. But all along I've compared his looks to Spock (eyebrow raise), Professor X (bald head) and the Bionic Man, so this is just another step for our sci-fi baby.

6 Weeks Old

Happy 6 week birthday, Gabriel!! We love you!!

Gabriel was stable, better than the last two days. Gabriel had a lot of awake time, 2 hours with mama holding him. Then Uncle Chris and Aunt Dena visited and Gabriel LOVED Uncle Chris. They made eyes at each other; Chris bounced his legs and played bicycle kick. Gabriel was fascinated. He smiled quite a few times! We are glad to be reminded that Gabriel is a cute kid with a normal mind that is growing and developing with movement and play and sounds. Thankful to have noise and play re-enter our room.

Today is 3 weeks here.
Planning for home: Gabriel is unique in that he is smaller than the usual child on a ventilator, and there are few choices of masks for the planned home ventilator machine. Many people are putting their minds together to come up with a solution. It's looking like next week. At least power to our home has been restored (after the storm).

A Real Smile

Today was special. Gabriel and mama were talking, when mama laughed and Gabriel smiled, a real smile.

Our friends at Child Life helped us make some memories to hold onto. Eleanor visited and we made "art projects." Ink hand prints with the four of us; plaster molds of Gabriel's feet; sculpey-clay beads with his hand prints. And Eleanor sang "Twinkle Twinkle" for a musical memory.

Hard Day

Today was a hard day. Gabriel tried a sprint, but immediately had a severe episode of low oxygen. It was scary, but we had a nurse and respiratory therapist in the room with us and they acted quickly. But we will likely not try any sprints. There was a second issue in the evening. We were almost too anxious to leave, but the night went well and we slept too.

Gabriel's First Concert

Gabriel was stable. He had his second visit with Uncle Peter. He also had his very first house concert with a famous singer songwriter; we were grateful for the gift, and Gabriel had open eyes. We also showed Gabriel a sparkly pinwheel and mirror toys sent from CureSMA.

We are amazed and grateful to CureSMA. Jo emailed them and within 2 hours they had sent out an information packet by overnight delivery, and then a care package of age- and ability-appropriate toys. Soft blankets, pillows, lightweight toys (balloon, feather), sensory stimulation toys (the pinwheel, crackly paper), and even a Fisher Price ocean music/projector. We appreciate the support from people who don't know us, but know the pain we are going through.

Time with Eleanor

Gabriel seemed to be working harder to breathe at times, so the doctor increased the breath support (number of breaths per minute he gets more air pressure in). The nurse said he was fussy again at night (he poops and is fussy every night between 5 and 7pm) but this is normal baby behavior.

Aaron and Jo and Eleanor celebrated life by having a family day outside in the sunshine at the beach. It was a beautiful day. After two weeks of stress and air conditioning (which felt to Jo like March), we were happy to be out in the summer.