Thanksgiving 2022, we made our annual cross-country voyage to my parents' house in Oklahoma for the holiday. Evie and I flew to make it easier on her, and Rob and Ben took a two day boys' drive up through Denver to see the air and space museum. Within two days of being there we noticed a change in Evie. She seemed to have more energy, sleeping a little less, and made more sounds. She was more alert. She was about 8 1/2 months old.
We had begun to wonder if elevation had an effect on Evie's pulmonary hypertension and oxygen intake. When you go hiking at a higher elevation, the air is thinner so to speak, so it feels harder to get adequate oxygen intake. We lived at around 5,500 ft above sea level. Is there a connection to her hypertension and altitude? We started asking questions when we would meet with her doctors. They did say lower altitude may ease her symptoms. There is nowhere in Utah that has an elevation below 2,000 feet. We were curious if a move would be good for her. We were desperate to see who she could be if she wasn't so tired all the time, if she had more energy. Even a little congestion seemed to tax her well beyond what it did to Ben at that age. Listening to her breathe harder and regularly taking a big, gasping breath was awful.
We had an oxygen machine at home, and were told to put her on it at night, all night. We did everything to try to keep the cannula in her nose. We tried different tapes, ties, hats, swaddling, barriers, and Rob even made a whole head harness similar to what one might wear with a CPAP machine. It was soft and oh so cute, and it helped, but only briefly. As soon as she'd move, it would move and the cannula would be above her nose or in her mouth. The doctors had started to talk about medications to help. We asked a lot of questions, searched and prayed for anything else we could do before turning to medication.
Slowly, she was starting to make progress, definitely on Evie time. She was about 8 1/2 months old before she could sit unsupported for any length of time. Around month 11 she started to be able to sit up on her own. The day after her first birthday she started army crawling while on a trip to California. She hadn't done that at all, until we had been there a short time. Low elevation? More energy? There was a definite pattern emerging that we could not ignore. Regardless, we celebrated every little Evie milestone.
In early 2023, we took our planned vacation to Hawai'i. We had planned this trip back in the summer and had no idea how momentous it would be. We enjoyed our trip. Even more, we got to see our girl awake, alert, energetic, and she did not gasp but a couple of times the entire time we were gone! She'd gasp so often on a normal day, oxygen cannula on or not, that it had become almost normal, though saddening. So we definitely noticed when it didn't happen. One day, we were walking through a tiny grocery store in Hanalei, and Rob was playing with Evie. She laughed. LAUGHED! This was the first time we ever heard a big Evie laugh! It seemed to surprise her too. Any doubts we had about a lower elevation being a good idea vanished. We were going to move. As soon as possible.
The great thing about our professions is our ability to work pretty much anywhere. In February 2023, less than 2 weeks from the time we left Hawai'i, we had an extraordinary opportunity to move from the high desert of the Beehive State to the tropical Aloha State, and made the decision to go. We jumped through all of the hoops, donated and sold all of our furniture and a lot of our stuff. We sent some important and sentimental things back to Oklahoma with my parents. We shipped our vehicles and the items we elected to take. On March 26th, we left Cedar City, and on March 28th we arrived in Hawai'i. We now live around 300 feet above sea level.
Island life definitely suits our girl. Shortly after we moved she found her voice. She realized she could yell! Yell she did. Evie would randomly yell with a Cheshire cat grin on her face. You could see her whole body work to yell and it was so funny and heartwarming! I did wonder aloud a time or two if our neighbors thought something bad was happening since there was all this yelling. I'm fairly confident our entire street heard her. No emergency responders ever showed up though, so I guess it didn't sound as bad to them as I had imagined. The excitement and pride emanating from her tiny body was palpable, so beautiful and fun to watch. In a short time, Evie learned to stand supported, and started doing this funny sideways scoot movement, and then skipped straight to bear crawling around 18 months. On Thanksgiving Day, 2023, at 20 months, she started using a walking toy to cruise around the house. Our girl still takes naps, but only 2-3 a day. She has so much energy and gets into everything, just like any other toddler her age.
She isn't speaking yet, but we know she understands a lot of what we say to her. She also knows I'm "Mamamama" and Rob is "Dadadada" because she'll come toward us saying that. She's just recently started understanding the word no and knows exactly how to pout that bottom lip and turn that little mouth down. Redirection is a game to her. We redirect her attention, she plays along for 10 seconds, and goes right back to whatever playful mischief she was getting into previously. She does it all with the cutest smile. I love that smile.
Evie has a wonderful team of physical therapists, speech pathologists, and other interventionalists. When they assessed her, she scored high above average in one area: social skills. Meeting Evie, you would immediately understand why. She loves social connection. She's demanded eye contact from the gate. She loves to hug, play, and be the center of attention. She is the unofficial greeter and entertainer of every single establishment she enters. She takes up space, and I will forever encourage that. She is also not afraid to let you know when she's had enough. She'll distance herself from peers when she needs a break, and then rejoin when she's ready.
She has a great team of doctors and specialists who have commented on her remarkable improvements since moving to Hawai'i. One very notable one is that her pulmonary hypertension completely resolved by her first cardio appointment in October, 2023. When I tell you I cried. I cried! Ugly cried. I cried in the doctor's office, I cried at the curb waiting on the cab back to the airport in Honolulu, I cried on the plane, and I cried at home. Tears of pure relief and validation that she is healing and we made the right choices to move here. Happiness that we no longer have to worry about her lungs and heart having to work that much harder and the toll that takes on her little body.
Moving to Hawai'i was not easy. It was a huge adjustment for all of us. Honestly, I'm still adjusting. It took Ben longer to find friends than it has ever taken him. That hurt my heart and made it impossible for me to accept where we were. It's hard to feel torn between your kids. Having one kid who is enjoying the ocean but is lonely as can be, and another who is finally getting to be the active toddler she has wanted to be. Ben finally did start making friends, and despite his need to find them, he was careful and chose kids he thought would be "good friends." I sincerely hope he always recognizes positive friends. Ben had a few friends before his birthday party at the end of September. He had a great Nerf battle birthday party and then Evie had her October 6th cardio appointment. Both of our babies are happy. Both of them are healthy. My mama heart can breathe and I can focus on creating my happiness here too.
Disclaimer: Neither Rob nor I are medical doctors. So in no way am I suggesting that what worked for our girl will work for anyone else. We noticed certain things, like altitude, affected Evie and how. We talked to her various specialists including her pulmonologist and cardio teams. We tested our hypothesis more than once, but we also understand it is not something that may be beneficial to others. We also realize not everyone has the flexibility in their lives that we do. So there is no, absolutely NO suggestion or belief that those who cannot make the changes we were blessed and fortunate enough to make are in any way lesser parents/families. We recognize how fortunate we were and are to have those options. We hope and pray for healing for all little ones.
Sending love to you all. Hoping one day there is a cure for pulmonary hypertension so all of the kiddos facing this could breathe easy, and parents too!
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