Hello, friends and family of Bianca! 

She has had an absolutely wonderful time being out of the hospital, being home with her brother and sister.  At the beginning she was not comfortable being in a separate room from mommy – if you remember at the Ronald McDonald House, she refused to sleep anywhere except in the big bed with mom.  Good thing Fiona had requested and been gifted bunk beds for her birthday in September! The girls slept together in the same bed several nights before they decided that separate beds in the same room is the best choice – six months later, they still spend more nights in the same room than in their own, separate rooms.  Bianca was surprised with a princess room and she loves it – at one point asking if she could move her princess bed into Fiona’s room.  The fight like sisters, and love like sisters.  They are best friends and other than Mommy and Daddy, Fiona is the most thankful and happy her sister is home.

We have been working hard to handle the emotional rollercoaster that comes with our recovery from the ups and downs of 2022. Nick and I have had happy tears more often than sad, but it’s hard. Of course we’re happy… but we’ve had to work on communication and giving ourselves lots of grace.  Our brains still don’t function as well as they should, and we almost never have energy to tackle projects and stuff, but that’s slowly getting better.  No two post-transplant journeys are the same, so we’re walking an unclear path as a family. We second guessing if we’re getting her out too much, if we’re not protecting her enough… or if we stress too much?! There’s not a clear answer on these things.

All that said, there’s of course been progress over the last four months since we really updated everyone – both good and not so good. In an attempt not to write a novel, please accept bullet points, but know that I have pictures and a lot more detail around any of these things, and we’re an open book if wish to hear or see more! 🙂 Bianca status updates:

• Her G-tube finally healed. We’ve struggled back and forth with the body trying to grow extra skin around the site, and infections around it.  She was able to sit in a bath tub again starting March 15!  The biggest setback was when she stepped on the extension and pulled out the tube last week – OUCH.  Imagine getting your ear or something pierced, and having a big ball on one side of the piercing – and that getting pulled through your skin.  Again, ouch… she’s so tough!
• At the end of March the transplant team ordered her first post transplant – heart cath and biopsy.  GREAT RESULTS!!! Zero rejection, and her pulmonary hypertension numbers were further down from the last cath in October of 2022. Whoo hoo! She’s not normal yet in terms of heart failure or pulmonary pressure, but we’re making progress.
• Additional routine checkups with Mayo have resulted in reducing meds, so thankfully we’re now down to 11 meds, four times throughout the day. We have developed a system for prepping a week’s meds at a time, where we take two-ish hours each Sunday night (four to five man-hours) to pull and organize all the syringes for the coming seven days.  If you’re ever willing to help out on a Sunday night – you know where to find us! Kitchen table, as soon as the kids are in bed!
• Hopefully in previous posts you saw the WCCO (CBS) television network coverage about Bianca and our story; we (Laura, since Nick’s mic didn’t work) also were interviewed by Mayo’s marketing/communications team for their Mayo News Network, as well as the Ronald McDonald House.
  • Here’s the MNN link: https://newsnetwork.mayoclinic.org/discussion/biancas-transplant-journey/
  • The RMH story was actually part of their “Spring appeal” where they mail potential donors a story. It was fun to get mail with Bianca’s face on the outside – she loved it!
• In April I attended the heart moms conference in Stillwater (through Camp Odayin). Besides the awesome comradery and support with other moms who “get it”, I learned about more resources for our family, and then started the long frustrating path for government resources, specifically paid parent and secondary health care (Medical Assistance).  We previously were told we didn’t qualify due to income (literally we made something like $100 too much in 2020 to qualify), but the new information was that we could qualify based on medical review.  Wish us luck!  Basically the hope is for MA to pick up anything my current employer-sponsored plan doesn’t, and then paid parent would cover Nick being out of the workforce (though they offer less than minimum wage, it’s way better than nothing!!) to care for Bianca while she’s still transitioning back to “normal”
• In early May, she was going against directions and fell out of the car trying to get out on her own, and broke her right humerus. Since that’s where her PICC line was, and at the time we still needed the PICC for blood draws, they did not put a cast on it; she was in a modified brace for about a month.  Luckily it healed really well!
  • This fifth major bone break prompted new/additional Endocrinology appointments/conversation. They had wanted to start bisphosphonates, but we talked them out of it after advocating for our girl.  We landed on taking additional follow up x-rays on her previous breaks, and renewing the conversation if she has any major breaks where there is no big accident or fall to account for it. 
  • What we did learn was that her left femur is now 2-3cm longer than her right femur, with a slight curve to it. We don’t really know what this means yet; data for baseline comparison starts at age five, which she will reach in October of this year.  So, more likely to come on her bones and potential long-term implications.
• In late May we visited Mayo and her doctor was kind enough to take her PICC out, which meant no more weekly home health care visits! We’re both happy and somewhat sad about this, as the nurses that come into our home week after week become friends or even like family, and we have had some wonderful nurses!
• Once her PICC site healed, two big things….. #1 deep water baths!!! Saturday June 3 was her first full/normal bath since May of 2020, when she was still just about a 1.5 year old… so this felt so good, and was so easy (in comparison to having to be careful about her PICC and keeping it dry). #2… this meant full body swimming in the pool!  It’s been fun to watch her transition with water.  She’s always enjoyed playing with water, but not having been able to have any sort of bath the entire time she was inpatient in 2022, she developed a sort of sensory resistance to the feel of water being poured on her, sitting in deeper than just her feet/legs in, etc.  We’re still working on allowing us to wash her hair without a tantrum, but at least now she wants to be carried into and float around in the pool, and really enjoys laying on her back and “floating” (while being supported by mom or dad of course) in the water.  Life is so good.
• Summer is here! Of course, we had to figure out what to do for the summer this year, with input from her doctors as well. Our awesome daycare provider was very understanding as we went back and forth, changed our minds, changed our minds again and even confused ourselves. We landed on Daddy daycare for Fiona all summer, except for four random weeks where we’ve signed her up for various half-day camps.  Devin is still at daycare full time, and Bianca goes twice per week.  We were hoping to send her three times per week, but right now, we just need to save money.  In the fall, Bianca is signed up to start half-day preschool five days per week! Eeek! She still naps at daycare and absolutely crashes on days where there’s any activity like visits to a playground – so I’m a little worried about this transition to preschool… but all we can do is try, and pivot if we need to.
• Two of the other resources I learned about through the Heart Moms conference provide fun activities to families of children with life-threatening illnesses, called HopeKids and A Kid Again. In June HopeKids provided tickets for Nick to take the girls to the Minnesota Zoo, next Sunday Nick and I get to attend the Dude Perfect event, and we get Twins Suite tickets for the whole family in late July!  It’ll be our kids’ first time at a Twins game!
• Last week, A Kid Again hosted their annual day for AKA families at Valleyfair. It was HOT, and we did not bring Devin, but after cooling off (carefully) in the water park for awhile, the girls rode several of the little kids’ rides and had a blast.  While they did not want to leave, they both were exhausted and fell asleep in the car, almost before we were out of the parking lot!

We are truly trying to make the most of this second chance we’ve been blessed with – life is so precious and short! Here’s a list of the “big” fun things we’ve done as a family over the past four months, but we’ve also visited playgrounds, had fun things for dinner/breakfast, etc… doing what we can to make memories.

• Shriner’s circus
• Splash pad
• Fiona graduated from kindergarten!
• Dance recital for BOTH girls!!
• Camping in the backyard
• Princess Royal Ball (Met Belle, Alice (in Wonderland), Jasmine, Cinderella, etc… SO FUN)
• Weekend away at Breezy Point (this was Mom and Dad only… our first trip since Bianca’s diagnosis and our first time away without kids since Bianca was born)
• Bianca being Fiona’s show and tell at school
• Bowling at Fiona’s friend’s birthday party – first time for Bianca!
• Cousin sleepover – six cousins (of 8) sleeping in our family room – and they actually all slept!

We love our girl, even through the sass, the tantrums, the impatience, the independence… this all makes her who she is, and we love it all.  She has the best giggle too – which we’re getting to enjoy more and more these days 🙂

Love, Nick and Laura