My last update was back on February 13th when we brought Betty to the condo, which became our home with Betty there. What a crazy month filled with Joy, happiness, anxiety, appointments, ER visits, sleepless nights, diaper changes, progress and growth for Betty and us.

Let’s talk about Betty, she is doing great. She gets weekly echo, 15 Lead EKG, Lab draws and so far all have been great, Dr’s have no major concerns. We adjust her medications here and there to make the numbers the way they like them. She is tolerating her feeds and they are increasing them weekly. She is a little heavier every time she is weighed(8 times since discharge). We really do watch her grow. At her last visit she was 4.25 kilos(9lbs 5oz). They tell me this is 28 grams a day, we really watch her grow. Andrya has diligently been teaching her to use a bottle and is up to 30 ml a day by bottle. This is a huge accomplishment and means Betty may be able to get a feeding tube out and begin to take medications by mouth. Betty has graduated from taking two medications, every little bit counts. She continues to wean off narcotics and we have found a pace that seems to work for her, us and the Dr’s support it.

Let’s really talk about Betty, she is wonderful and she has learned to smile which will melt anyone’s heart. She coos and grunts, grunts usually means something is happening and I’ll be changing a diaper soon(it’s happening while I type). She has good sleepy time and good cranky times. She loves stroller rides in her car seat, kinda likes car rides(when dad drives, cuz mom sits in the back with her).  For what Betty has been through she continues to impress and tolerate beyond belief. We look forward to getting to know her and for others to meet her.

Speaking of others meeting her, we were able to go home for the weekend!I am typing this from my own couch with Lillie, my dog by my side. This is a dream come true and brings me to tears to type it. I never would have thought we would be here this quickly and with such positive results. What we have been through is truly a miracle. The trip home was a little terrifying and exciting at the same time. Some Dr’s were a little hesitant to let us go, but the nice thing about having a team of six wonderful Dr’s is if you ask enough you can find one with the right answer, Yes, which is SCH campaign, It starts with YES. We assured them we would take precautions to keep Betty safe and would drive in the best conditions. The hardest part about being home is limiting the exposure to Betty. We would love for everyone to meet, hold and love Betty. They have a saying around the hospital that your big germs are too much for her little heart. We have found safe ways to allow her to meet folks, she can go on walks in her stroller with her rain cover on(that’s what they call them in seattle but it looks like a baby in a bubble, see pictures). If people stop by we use masks, hand washing and limit time with as much outside time as possible. Betty runs hot and seems to like the cold air, she gets that from her mom. We went to Cascade Medical yesterday to get Andrya’s second covid shot and were able to visit co-workers(not the right word friends, family is more fitting). It was so great to see everyone and we are sorry if we missed you we’ll be back soon. 

Believe it or not we miss the security of being close to SCH, mostly me, Andrya is fearless. We will return on Sunday(we told the DR’s Saturday, don’t tell and we’ll blame it on the weather if we get caught). It just feels so good to be home. We continue next week with 4 to 5 appointments a week. We have a goal to be home by March 25th as our appointments are less frequent in April. 

We will continue to keep you along for the journey and truly could not have done this without the support of others.