Because Daphne spent the first month of her life at sea level, we knew she would need time to acclimate to Utah’s higher altitude and thinner air. We expected her to struggle a little during the transition and need a bit more supplemental oxygen than a heart baby born in Utah would need, but we believed her body would adjust and she would do just fine.
When Daphne was put on oxygen in Alabama, her medical team instructed me to maintain her oxygen saturations (sats) above 75 percent using as little supplemental oxygen as possible. At UAB, she needed just 0.3 LPM (liters per minute) of supplemental oxygen to stay in range, but as our altitude increased, so did Daphne’s oxygen requirement. During the flight (about 8,000 feet), she needed between 0.5 and 1 LPM, with an occasional boost of 1.5 LPM, to stay above 75 percent; when we arrived in Salt Lake City (just over 4,000 feet), she was on 1 LPM, a high but not excessive flow rate.
At first, Daphne seemed to do quite well on 1 LPM, easily maintaining sats in the high 70s and low 80s. Her levels dropped when she became upset (crying instead of breathing), but she usually recovered on her own in just a few minutes. When she didn’t, I bumped up her flow rate temporarily until she exceeded the 75–85 percent range. After a couple of days, I noticed that her base level had increased and she was no longer capable of maintaining on 1 LPM.
By Tuesday evening, Daphne’s base level had increased to 2 LPM, the highest setting on her oxygen concentrator. The flow was so strong it sounded like a strong wind rushing up her nose. Around 10:30 p.m., I put Daphne down for the night in her own room and went to my room to get ready for bed. As I was settling in, Daphne started crying, dropping her sats and setting off her pulse oximeter. That was the beginning of a very long, sleepless night.
Daphne’s oxygen levels usually improve when she’s being held and comforted, but on this night, nothing I tried improved her sats. She didn’t show any signs of respiratory distress (blue lips, heavy breathing, chest retractions), but she was irritable, fussy, and clearly uncomfortable. I couldn’t increase her oxygen flow, so I just had to wait for her to come up on her own. I tried holding her, leaving her in her crib, shifting her position, feeding her, burping her, restarting her equipment, turning down her oxygen, removing the humidifier—anything I could think of. But for 2 hours, her sats hovered between 68 and 72 percent.
When she finally rebounded into the high 70s, I tried to go back to bed, but within minutes, she dropped her sats again. I took my pillow into her room so that I would be closer to her and Will would be able to get better sleep. I tried to fall asleep in the rocker-recliner, but every time I closed my eyes, Daphne’s monitor alarmed. Daphne just couldn’t maintain her oxygen levels.
At 3:30 a.m., I decided to try putting Daphne in her swing, because sometimes she sats better sitting up. Getting Daphne, her pulse oximeter, and her cords downstairs in the dark was challenging, and I ended up waking Will and Shelby. Instead of going back to bed, Shelby insisted on coming downstairs to help me take care of Daphne. I put Daphne in her swing, put in a movie for Shelby, and fell asleep on the couch with Shelby in my arms. After the movie, Shelby helped me feed Daphne.
By 6:00 a.m., Shelby and I were both exhausted, but Daphne wouldn’t fall asleep in her swing. I lay down on the couch with Daphne cradled in my arms (carefully positioned to avoid smothering) and Shelby draped over my hip, and we napped like that until Daphne’s next feeding.
After such a frightening night, I knew I needed to follow up with a cardiologist, but Daphne hadn’t been to an appointment in Utah yet. I contacted the cardiology department at Primary Children’s Medical Center and explained Daphne’s situation to a nurse, who consulted with Daphne’s primary cardiologist and then told us to come in for an appointment with the on-call doctor.
That appointment did not go well. Will and I went together. The on-call doctor (who I won’t mention by name) seemed nice enough at first—he did a good job reviewing Daphne’s condition and listening to her medical history—but throughout our conversation, he made it abundantly clear that he didn’t expect Daphne or our family to handle our situation very well.
He explained that children with Daphne’s condition tend to decline after their third surgery, the Fontan Completion, and that they typically need a heart transplant after that. Up to that point, no one had told us that Daphne would most likely need a heart transplant, so that was shocking news. But what made it worse was that the on-call doctor continued by saying that the heart transplant would most likely fail, and he followed that by saying that he’d seen some couples handle this well but that many couples don’t stay together. So within a few minutes, he basically told us that our daughter would die no matter what we did and that we would most likely get divorced. We listened without responding, but we were furious.
I felt like the on-call doctor was saying, “You have no idea what you’ve gotten yourselves into. You made the wrong choice.” This is halfway right. We didn’t know much about Daphne’s condition when we decided to adopt her. But we did think about how it would change our world and Shelby’s world, and we did mourn, knowing that we might outlive our daughter. We made our choice because we knew it was what God wanted for us and for Daphne. We couldn’t have made a different choice.
I’m sure the on-call doctor thought he was preparing us for the worst, but it wasn’t the right time, and since he wasn’t Daphne’s primary cardiologist, he wasn’t the right person. He tried to rob us of hope. But without hope, there would be no reason to keep pressing forward—no reason to visit him. Daphne deserves to have parents who will fight for her and who will make every day count. Every day we buy her is a day for treatments and procedures to improve. We have every reason to hope.
The on-call doctor ordered an echocardiogram, which showed good blood flow to the right lung but inconclusive flow to the left lung. Based on Daphne’s decreased sats and the results of the echo, the on-call doctor decided to admit Daphne to Primary Children’s Medical Center on Wednesday, February 23, for further observation.
Since being admitted, Daphne has continued to have ups and downs. On Thursday afternoon, she was doing extremely well, sating in the 80s on 1 LPM. But during her evening examination, she got worked up, and her sats dropped drastically. The nurse increased her oxygen flow little by little, until she was receiving 3 LPM. Throughout the night, my mellow baby became increasingly irritable, squirmy, and fussy. She didn’t appear to be in respiratory distress, but she was clearly uncomfortable and seemed to have an upset stomach. I was up all night, trying to comfort her. Eventually, the nurse requested a suppository to help Daphne with constipation. Once she received it, she began to relax, and we were both able to get a little sleep.
Since Friday morning, Daphne’s sats have continued to fluctuate up and down, but overall they seem to be trending upward. She seems to be experiencing fewer and less dramatic d-sats and recovering more quickly on her own. I met Daphne’s primary cardiologist, Dr. Kim Molina, for the first time today and really liked her. She was friendly, attentive, and honest, and Daphne stayed calm during her examination.
Dr. Molina explained that, before Daphne can be discharged, she needs to demonstrate steady weight gain (so far, so good) and hold her sats above 70 percent at 1 LPM for 24 hours. This second requirement is a pretty ambitious goal for our little girl, and it may take some time to achieve. But truthfully, Daphne won’t be safe at home until she reaches these levels, so we’ll just have to keep praying for swift, steady improvement.