We are getting ready to take a girls trip to the Pacific Northwest! I love Seattle. I have such fond memories of it growing up and before last year, it was a place of excitement and fun. Then, Nora got sick and after a week in the hospital here in Montana, we were flown on the MedFlight to Seattle Children’s Hospital. Boy was that an adventure. My dad and husband drove the 16 hours through the night to get there before us. We flew first thing in the morning and that was a TINY plane.
Our first night in Billings (2 hours from home) was very calm and a very late night. They were doing testing and getting her hooked up for hours and I tried to get in touch with my family who would be able to bring the things we needed. At this point, we were expecting a 3 day stay to get her tummy cleaned out and settled.
Our first full day, Nora was playful and curious. We had some lovely family and friends bring toys for her and we got to check out the playroom on the pediatric floor.
That energy didn’t last long. What we didn’t know was that Nora was heading in to bone marrow failure (TEC). But we were all focused on her tummy issues and we were hopping that her blood work would normalize once we could come up with a solution to get nutrients in to her. Surgery in the morning……
Waiting for pipsqueak to wake from anesthesia. Thankfully, her IV was in her foot that day so we didn’t get all tangled in the night trying to get some sleep. We also learned that she needed more attention and specialties than she could get in Montana. A flight was arranged for us first thing in the morning. My dad and Clint left Billings in a hurry at about 10pm with the few things we had with us. My black t-shirt got LOTS of wear. Thankfully my aunt and twin sister took good care of us and went to Target and got us a few things to wear while we were in Seattle. At this point, we had NO CLUE how long we would be away from home. It was all very unreal and hard to wrap my mind around. I didn’t sleep that night, but Nora did.
The morning was beautiful for a flight…..if you have to have a MedFlight. She slept until we landed and I just tried to focus on not puking……nerves, no food, and flying in a tiny plane are a bit much.
My dad is super Papa. He found his way around Seattle and found a baby store to buy a stroller. He then pushed her around the hospital for hours while she napped. The hospital room was noisy and whenever we were able, she was in the stroller having a stroll around.
My husband describes Seattle Children’s Hospital as a cross between Grey’s Anatomy and a zoo. It was amazing! Truly! This was a neat giraffe that we walked by every day on our way to get coffee. Nora only got to see it twice, but she was so interested.
There is nothing quite as sad as seeing a 14 month old be placed with a feeding tube. Once it was in, it wasn’t so bad…..but it was a VERY exhausting night. My mom drove out and stayed the night with me in the hospital so Clint could rest a bit. My mother in love also joined us to help out. We were so blessed. My Step-Mom came and made us blankets, ran errands, and drove us anywhere we needed to go. The love that surrounds us is unbelievable.
The day before her first surgery in Seattle, we were given a 4 hour pass to leave the hospital and have some fun while we could. We crammed A LOT of fun in to that 4 hours. We went to the Pacific Science Center and then walked over to the Space Needle. Nora fell asleep and was wore out completely. But it was so so nice to get fresh air and a change of scenery.
My mother in love was there to help us the day of surgery. Nora is a bit “rough” coming out of anesthesia, so we were happy to get any help. She is the queen of calm.
We waited patiently in the pre-op room and then I was able to sneak a few pictures as they were wheeling her in to surgery. I was holding her as she was put under anesthesia. I think it must have been less scary that I was holding her and the last thing she saw before a “nap”.
After getting good results in cleaning out her little tummy and seeing some improvement in her blood work, the doctors decided that she was stabilizing and could continue to recover at home. It was a full 4 months before her blood work came back normal and her bone marrow started kicking back in gear. But, we are so thankful that there was healing and that we got to do it at home. We are blessed with health and happiness.
My sister and my mom are coming with Nora and Verity and I to Seattle for her follow up trip. It has been 8 months since we were flown over there and in a frenzy. I will be glad to go back just to follow up and learn more about her genetics. She has a connective tissue disorder and they did DNA banking when we were there to study it further. I am sure I will be flooded with information and I am looking forward to it.
Thanks for hanging in there and making it through this VERY long post.