I have sat down to write this at least 3 times. The first time I realized I no longer had wifi because I had been using SCH’s wifi. We now have wifi after a quick trip to the wifi store. So let’s talk about our baby girl Betty. The other times were interrupted by a long list of daily events focused around sweet Betty.

Betty is doing great, her new heart is working great. There is no way to express gratitude for such a great blessing. We were able to write a letter to the family and hopefully this will bring them some relief. We have been able to spend a few days to really get to know her. Betty is such a sweet girl and Andrya is the best mom.  We enjoyed a snowy day in Seattle in the comfort of the condo, which is such a great spot to spend time as a family. We have everything to keep us happy and healthy. I would like to thank Kevin and Molly for this. It truly feels like home with Betty here.

 Betty has a long list of meds and we diligently learn to administer on time with accuracy. She has about 20 different medications and we have 15 or 17 alarms set to administer them(it keeps changing). Thankfully there is an app that helps keep track and can be updated in real-time by her Doctors, Nurses and pharmacists. It also keeps track of the medication weans which is one of Betty’s biggest struggles right now. Luckily she has the most loving mother to calm her and help her through those tough times.

We could not be happier with Betty’s health, most of her ailments come from the crucial medications she is on. We endured our first trip to the clinic and lab at SCH on Friday, which will be a regular part of our lives in the next couple of months. SCH only allows one caregiver in the hospital at this time to ensure less exposure to their precious patients. This makes the trip through the hospital interesting as her labs must be drawn at precisely 1:30 pm and then her medications administered at 2:00 pm. Getting lab draws was difficult as a parent and even more for poor Betty, it took three pokes to get enough blood for labs, in between pokes I was changing diapers(speaking of diapers, I’ve got to go change one I’ll be right back…). Then quickly navigate floors to the next appointment, while I wait I administer medications from her cooler(some of the medications need to be refrigerated). We got through the first one and should get easier from here. Betty was an angel the whole time except for the pokes, weighing and BP check.  Other than that she slept comfortably in her car seat.

SCH(Seattle Children’s Hospital) continues to support us. We have 24-hour access to nurses, doctors, pharmacy and feeding pump supplies. We have scheduled 4 to 6 appointments a week and they will begin to taper off(like her medications) as we go and Betty’s health improves. 

The support we are receiving is tremendous and really has allowed us to focus on being new parents to our special girl, which by the way is a wonderful and tiring experience in itself. We have received letters, food, gifts and much more to many names to mention. Glenna, Ed, Larry(Dad) and Christina continue to diligently care for our pets and house. To John, Rachel and Lucas that continue to run the fundraiser with COTA for Betty and especially the donors please know, Betty will have a bright and healthy future and your contributions will allow COTA to help us all along the way(one more diaper change and I’ll finish this up, Andrya is sleeping after a long night of holding and patting to help Betty through one of her many weaning withdrawals). This all means so much to us. One of my biggest struggles is finding ways to express our thanks for all that has been done for us. I hope these updates will do for now. Please know we are so thankful for all of this support and hope to begin to pay it forward when the time comes.

If everything goes as planned I will return to work on March 16th and my mother will fly out on March 14th to help Andrya and me while we are apart. We will remain in Seattle with Betty until her team and us feel comfortable that we can care for her at our home in Leavenworth.  We love you all for following along and being part of Betty’s journey. She is so precious and beautiful. Alright, I got to go before she wakes up(I’m still wearing my pajamas from 2 nights ago, saw no reason to get out of them yesterday). I am sorry if I forgot to mention all that have helped along the way. The list would be in the hundreds and I’ve got limited time before Betty wakes. I will also add some new photos today.