Second Update from Jeff

I guess you could say that we now have a taste of what it’s like to live the life of the rich and famous: at the moment we’re many thousand feet in the air in Abigail’s private jet. This is the second flight for this little jetsetter this week. One of my passions in life is travel, and I’m happy that Abby shares that passion.


Yesterday we got a hint that we might be flying out today, but no one could confirm that. In fact, until 11:00 a.m. today no one could confirm it. But by just after 1:00 we were leaving the hospital with Life-Flight on our way to the airport--the whirlwind continues. Here are a few of the details that led to today’s transport.

First Procedure a Success

Abigail had her first procedure yesterday--the catheterization whose purpose was twofold: (1) to widen the hole in the upper chambers (right atrium and left atrium) of her heart to allow for the mixing of the oxygenated blood and the oxygen-depleted blood; (2) to emit die in various places in the heart, particularly around the coronary arteries, so that the x-ray machine could show the surgeons and cardiologists exactly what was happening in the heart. The x-ray’s confirmed the placement of the coronaries in relation to the aorta, which not surprisingly in Abigail‘s case, will make the surgery that much more complex.

According to everyone involved, the procedure went perfectly. The doctor who was in charge of pulling that inflated balloon back through the hole in the wall between the left and right atrium did so with perfection--so much so that he received a standing ovation from those in the room. As predicted, that procedure has increased the oxygenation in her blood and her oxygenation saturation levels are excellent, and she does not require any oxygen right now; however, they still have the ventilator tub in her throat for transport, and I assume that they might just leave it in because they use it during surgery as well.

After the procedure they began talking about transporting her to Stanford, and suggested that we might possibly be going tomorrow, but that they could not guarantee anything, especially the time. It is odd how that kind of ambiguity hasn’t bothered Lisa or me. It just is what it is. They couldn’t tell us whether we would be flying with her. We didn’t know how and when we would get there, and we couldn’t book any flights ourselves until we knew. And even if Life-Flight were to give us a time in advance, we were advised not to book any flights because the odds of getting bumped for a greater emergency were decent. Beyond that we had no idea where we would stay in Palo Alto. But none of that really mattered; we knew it would just work out, like everything has. In a situation like this, you learn really quickly to accept your situation, and not to get too uptight about anything.

The possibility of getting Abigail to Stanford quickly was exciting (even though the prospect of the surgery is still quite frightening on one level). However, we then stated to feel to anxiety of leaving our four children for who knows how long. And even though we have hoards of people who are willing to not only take care but to love our kids right now, they still need their Mom and Dad.

The Kids Come to Visit Mom and Dad

Last night Lisa’s father ran Jeffrey, Daphne, and Emma up to see us. We got to eat in the cafeteria, show them pictures of Abigail’s heart, and hug them. I don’t think that the hospital wanted anyone in the hospital under the age of 14, but we didn’t ask--on purpose. We knew they had the swine flu long ago and weren’t at risk of infecting anyone. I, of course, was afraid that security might see the kids and require us to leave, so I walked briskly with Emma in my arms through giant circular revolving door at the north entrance of Primary Children’s. I was so anxious to get through the door and into the cafeteria immediately to the left that I moved too fast through the door, smashing Emma and I into the clear glass door, which ironically showered a lot more attention upon us than would have otherwise existed. Thankfully, security just smiled and didn’t bat an eye. Once in the cafeteria I was able to share some exciting news with the kids.

An hour earlier we had obtained permission from the hospital to allow for Abigail’s siblings to spend time with her just before transport. A kind social worker, Shelly (none of the name badges of the hospital employees have last names except for the physicians) spearheaded the effort for me, and obtained permission for our kids to come and see their sister. I am grateful that the powers-that-be at Primary Children’s were sensitive enough to put family over policy. I have nothing but tender affections for the entire staff at Primary Children’s. Every single nurse and doctor that took care of Abigail was kind, sensitive, and genuinely interested in her well being. Their bedside manners were off-the-charts. We hope that we get to spend many more hours there over the years, as Abigail will return for check-ups. They say that they have many adult former patients who still go to Primary Children’s for follow-up care because the doctor’s and nurses there are so adept at handling their complex cases.

Anyway, we had a sweet visit with the kids. After about two hours, it was time to send them home to get ready for bed. We could sense that Daphne and Emma were especially needy and clingy, and we thought momentarily about having them stay the night, but the logistics seemed too difficult, so we sent them home with grandpa. About 15 minutes after they had left, Lisa said, “We made the wrong decision; Daphne and Emma need to be with us; I don’t know how we’ll pull tomorrow off, but we just need to do this.” Lisa then called grandpa, and he very patiently got off the freeway, turned around, and brought them back. I will explain momentarily why I am so grateful for that decision. Too often we ignore those little promptings to put feelings over logistics. And before we know it, their little lives pass by, they grow up, and we look back and have no memories of logistics.

Swimsuits? Who Needs Them?



I took the girls back to the hotel while Lisa stayed with the baby. As soon as we got settled into our room, the girls asked me if they could go “see” the pool. They didn’t have a change of clothes, and they certainly didn’t have swimsuits, but because the pool is perhaps the best thing about any child’s vacation, I thought it was worth the visit. Once at the pool, they asked, “Can we dip our toes into the water?

“Sure.”

Once their toes were successfully dipped, they asked, “Can we just roll up our pants and get our legs wet.”

“Sure.” I could see where this was heading, but my defenses were down.

Then, the climax, “Can we just swim with our clothes on?”

Logistics were flashing through my mind: is the hotel staff and other bathers going to be bothered by people swimming in street clothes; is the hotel staff going to be mad when we come dripping through the lobby in a few minutes; what are they going to wear to bed; will their clothes be dry by tomorrow, and so on. Logistics, schmolistics. Let ‘em swim.

“Sure,” I said, shrugging my shoulders and smiling. Daphne did a double take: Did my Dad just tell me that I could swim with my clothes on? So, she asked again, just to make sure:

“Dad, can we swim with our clothes on?”

“Yes, Daphne, you can.”

“Really?” she asked a third time.

“Yes, really.” Before I had a chance to change my mind, she and Emma quickly submersed themselves into the water.

As they swam and showed me special tricks (“look, Dad, no hands . . .”), they would come up for air, ask a question or two about Abigail, and then go back to bouncing between the hot tub and the pool, clothed in full glory, as two sweaty, old fat guys in the hot tub observed, surely wondering if these girls’ father had lost his mind.

Are We Going to Stanford Today?

This morning Lisa agreed to rest at the hotel with the girls, who got to snuggle and be with their mom while I went and check on Abigail and tried to learn of the flight plans. I called her nurse on my way over to the hospital to find out if he had heard anything regarding transport. He hadn’t. I was concerned that we might receive 15 minutes notice prior to transport, and that we wouldn’t be able to arrange a visit with the kids, the two oldest of which were in school in Orem. I then called a friend in our ward, Sharon Peterson, whose husband, Reggie, is the director of Life Flight in Utah County.

“Sharon, does Reggie by chance have any insider access into the schedule of Life Flight to where he might be able to know if they at least have Abigail penciled in today? I just want to be prepared to get the kids up here in time to see her.”

Sharon made the phone call to Reggie, who placed multiple phone calls within his network. The first report back from Sharon was that the director of Life Flight at Primary Children’s wasn’t familiar with the name, and neither was the dispatcher, and nothing was on the schedule, but he was going to continue to make a few phone calls.

A few minutes later, Dr. Gray, one of Abby’s cardiologists, came in to check on her, and give me a report on things. After we spoke, he said that he was going to communicate with Stanford about her, which lead me to believe that we weren’t too deep into conversations with Stanford, and that perhaps that they weren’t ready for us to leave. I was about to text Lisa to tell her that we weren’t leaving today, when I decided to put it off for a few minutes, while I went to eat brunch (11:00). Before I left to the cafeteria, I spoke briefly to the nurse practitioner about my desire to have the kids come see their sister, and that if there was anyway to give us some notice about the flight, I would greatly appreciate it. She winked at me and said, “I’ve got a few connections.”

The Siblings Meet Their Sister



Within 5 minutes, I received a phone call: “Get your kids up here as soon as possible. Life Flight wants to take off at 2:00, which means they’ll be coming before 1:00 to get her ready. In the meantime, we’ll move Abigail in to the Family Visiting Room.”

I called grandma Stoddard and asked her to pick up Sami and Jeffrey as soon as humanly possibly at school. I then alerted Lisa that I was coming to pick up her and the girls.

By the time we got the little girls to the hospital, got their hands washed, and their gowns and masks on (a condition of the visit), Life Flight was in the hallway heading toward the Family Visiting Room. My heart sank.  The big kids were still en route. They’re going to miss this.

The social worker who had helped to arrange the visit quickly went on the offensive with Life Flight, “This girl’s siblings are going to visit, and I need you to give them 15 minutes.” The Life Flight runs, I just learned, 1000 neonatal missions a year, and 800 other (older people) missions per year. That’s 4 point something missions per day. These people are on a tight schedule, and their sense of urgency is usually motivated by life and death. So you can imagine why they were a bit hesitant to allow to much grass to grow under their feet by waiting for a few teenagers to arrive from school.

Emma and Daphne were able to go in first, while we anxiously awaited the arrival of Sami and Jeffrey. Emma and Daphne sang primary songs to Abigail, as the Life Flight personnel prepared her transport carriage. The primary songs were too much for my weak heart, and the tears flowed freely as I filmed the girls singing to their sister. With hands in latex gloves, they touch her head, hands, and body. Emma also told her the story of the Three Little Pigs.

Meanwhile, the Life Flight carriage looked near ready, and I began to wonder if the big kids were going to miss Abby. To my relief, Life Flight was still fast at work with preparations when Sami and Jeffrey arrived. They too dawned the masks, gowns, and gloves before they were able to come in and meet their sister. Gratefully they had a good 15 minutes with her as Life Flight continue to do their thing to get her ready, including moving her from her bed into her carriage, which required the connecting and disconnecting of who knows how many cords and tubes.

Just before they closed the carriage, they told each of the kids to kiss their baby sister’s hand, which each of them did, from oldest to youngest. We then somewhat hurriedly, hugged our kids, tears flowing all around, as we followed the Life Flight Team down through a few back-door corridors and elevator, out to the ambulance which transported us to the Salt Lake City Airport.

I am so grateful that we were able to fly with her. It made everything so much easier than if we would have had to navigate a commercial flight, stood in security, and dealt with the customer no-service that defines the airline industry. Our flight to San Jose was a quick 2 hours and 20 minutes, and we took off, flew, and landed without incident. We then boarded another ambulance (our insurance company is considering chapter 11 bankruptcy at this point) and within 30 minutes we were at Lucile Packard Children’s Hospital at Stanford University--our new home for who knows how long.

Final Lessons from Primary Children’s

It is with some regret that we leave Primary Children’s. One of the blessings of being at Primary Children’s--as I’m sure it is here--is that the longer you stay there the more you realize that your problems and trials are not as tragic or large as you think they are. Whether it is passing an eight-year old girl in the hallway, who is sauntering slowly past you with a head depleted of its hair from her cancer treatments; whether it is a 13-year old boy whose head is contained in some plastic contraption and whose underdeveloped and malformed body sits limply in his wheelchair; or whether it’s a grieving mother who doesn’t have the knowledge of the plan of salvation to carry her through this trial; whether it is a myriad of trials that we don’t have, we quickly learned at Primary Children’s that we don’t have it so bad. Abigail doesn’t know she’s sick; Abigail doesn’t have to worry what others will think about her bald head; Abigail hasn’t had enough time to wonder if she’ll ever walk or run.

Yes, we could feel bad for ourselves and for our little girl, but oddly, that isn’t an emotion we have felt. We are fully cognizant of the possibility that Abigail may not make it. She is facing a major surgery--one that requires a level of expertise that very few surgeons in the world have. We are not yet sure what God’s plan is for her or for us. We know what we are praying for, and we know what you are all praying for, and we hope like we’ve never hoped for anything before that Abigail will be granted a bill of health. Yet, despite all of that uncertainty, we again feel a tremendous measure of peace and gratitude for this tremendous blessing. Good night and hug your kids tight.