Routine

We have been home for a few days now. Shirley is one time consuming child! With her current feeding and med schedule it’s more or less impossible to string together periods of sleep longer than 2.5 hours. Stumbling through the house at 3am to prep milk and draw meds is almost comical. I’m very serious about her medications and somewhere deep in my subconscious I have an irrational voice that tells me I am the only one that can do it correctly. When 3am comes around though I’m probably no better than mole that has wandered to the surface (click here for a visual). Once I’ve made it to the kitchen I go up to the fridge and look carefully at her schedule posted there. I wait as long as possible to turn on the lights but I don’t know why! I have yet to draw her medications in the dark and I could probably save some time by flipping the switch earlier but instead I wait until I’m about to draw her med and then turn the lights on to ensure I’m dosing the right one. Now that I have completely destroyed my night vision I go back to her crib and search about for the NG tube. It really would make for a funny video. It’s a ridiculous process that must be undertaken to really understand why it’s funny! If you imagine myself as the aforementioned mole it really is the best way to read this first paragraph. We love this time at home though, when we go to bed and look back on our day we just smile to ourselves and think, “what an interesting, crazy, life we have.” Brianna and I started to talk about having kids probably around week two of our dating relationship and this is certainly not what we had in mind. Life rarely goes as we expect though and the ability to adapt to the reality of things is very important. Not putting too much stock into your expectations of the future is something I have learned the hard way a few times but I have never been disappointed by the outcome. We love our life and we love caring for Shirley, no matter how time consuming it may be. I hope you are not reading negativity into the phrase “time consuming.” I can’t see anything wrong with the fact that our time might be consumed with our daughter.

Adventures

Going anywhere is an adventure. We have ventured out a few time over the last week and each time has presented us with challenges and obstacles. Two of Shirley’s medications must be kept refrigerated. That, along with the breast milk for feeds requires carrying around a small cooler everywhere we go. Our diaper bag has all the normal stuff parents might pack for the day and topped off with syringes, large and small, a stethoscope and other random medical supplies required to adequately care for Shirley. We tried to go to worship service on Sunday and we made it there but after a big spit up in the car, changing clothes and diaper, feeding, and giving meds we spent a total of ten minutes in the actual service. It gave me a whole new understanding for why some people with small children might just stay home some weekends. Nevertheless we were glad we went. Our church community has been so supportive throughout this process and many people were itching to meet Shirley. Unfortunately, I have no idea what the sermon was about but we certainly heard the Good News.

We have gone out a few different places and each time has offered us a new scenario to learn from. The other most notable trip was to Seattle on Sunday afternoon. Many, many people have offered us televisions and dvd players to replace ours. Friends, family, and family friends alike have offered to replace the stolen goods. One gentleman even offered us his entire entertainment center complete with TV, Apple TV, Blu-ray player, sound bar and cabinet! We don’t have room for anything like that so we respectively declined not wanting to cherry pick the man’s goods. It was quite the offer though and we were very humbled. Instead though we drove to Seattle to meet with a wonderful couple (the Kirby's) that contacted Q13 after seeing our story on the news. They were wanting to just drive to the hospital and drop off a brand new television they had acquired but instead I convinced them to at least get coffee with us after we were discharged. So on Sunday we packed Shirley up and headed to Green Lake and had coffee with the Kirby’s. We had a wonderful time meeting these complete strangers and talking for a couple hours before loading up the car with a new TV. We didn’t really have any way to decide who to accept replacement goods from, but after the Kirby’s contacted us it was a no-brainer for me. Shirley’s life has put us into contact with so many people that we wouldn’t have met outside of her being with us. I love meeting new people and to have complete strangers be compelled to reach out in generosity towards us was something I didn’t want to pass up. 

Medical

Shirley had her first follow up appointment with the HFT at Seattle Children’s today. It went surprisingly well! Her echo revealed that her heart function had increased slightly from the previous echo. The doctors were pleasantly surprised and said that they don’t think that she needs to be monitored as closely as they originally thought. So now, instead of going to Seattle for appointments with the HFT we can simply drive down the road to a SCH satellite cardiology clinic in Tacoma! Shirley is also gaining weight consistently and we can see the pudge being added to her legs and cheeks. It’s very cute.

We may never be back to life as normal but we are finding a new normal and that is ok by us.

Thanks to everyone that has helped with meals since we’ve been home! It made adjusting to our new routine a little easier without trying to fit meal prep in between everything else.

-Joseph