Wow. We came home! Can you believe it? I’m not sure John and I believe it yet! The last few days have been exciting, exhausting, surreal and blissful. We arrived home late Tuesday evening and it looked like a bomb exploded in our house as we brought everything in from the hospital. It was then we realized that a Home Care Nurse was on her way shortly. We were juggling meds and getting Hope fed all while trying to clear the first floor enough that the nurse could come in and do what she needed to do with Hope. After only a few short hours it was surprising at the relief we felt at having a second set of eyes on Hope to say that she looked good.
We were struggling to figure out a good system for her meds, but we’d gotten her fed and she got her important immunosuppressant meds on time. After her first round of evening meds, a wave of exhaustion just overwhelmed all of us. John let Hope and I rest, but we woke up in the morning and realized that her last medicines of the night, her anti-arrhythmic meds, got missed. We immediately called the Transplant team and told on ourselves! Luckily, they just had us proceed with her med schedule as planned and redose one of the missed doses.
Now most parents who are bringing their baby home spend some time hibernating in their home before taking their first adventure out into the world. We did not have that luxury because Transplant Clinic is every Wednesday – of course the day after we discharged! We were in no way prepared to leave the house that morning. We didn’t know how long we’d be gone and one of her feeding times was right in the middle of when we needed to be on our way to the hospital. We thought we would surely be hours late to our appointment, but after two solid hours of work we arrived to the clinic in the nick of time, with Hope’s feed in progress and her meds up to date.
Transplant Clinic was fairly uneventful once we arrived. We needed an EKG, but that was just about it. Honestly, our biggest fear was that they were going to re-admit her after just 21 hours at home! Thankfully, her EKG was fine and they let us go home with a reassurance that we would find a system that works for us and a reminder to stay in good communication. And with that we were off to continue our adventure of getting to enjoy being Hope’s parents in our own home. We spent the better part of the afternoon just organizing her meds and home medical supplies. Time well spent in helping get comfortable with the most challenging part of having her home.
That evening was Hope’s first time entertaining company at home! She has a little heart friend, Bennett, that is about to go home and we had a farewell dinner with his parents to celebrate our kids’ similar journeys and the excitement of going home! Hope sure handed me a proper introduction to parenting when I begged John to give me Hope and she promptly threw up directly down the inside the front of my dress. So. Freaking. Gross.
I wish we could say that we got to sleep in and snuggle Hope all day on day #two, but the life of a transplant family does not have much down time! Hope was due to have some labs drawn to check on her immunosuppressant med level, her renal function, her magnesium and any indicators of infection. She got the coolest tip from her transplant buddy, Samuel, about wearing shades for any procedures so we started her out with her first labs in supercool shades that Samuel gave her as a discharge gift. Goodnight did she look adorable in them!!!
We were so excited for a litany of firsts – first road trip, first snuggle at home, first pediatricians visit and we even got to use her stroller for the first time as we pushed her through the hospital. I wish we could say all the firsts were this joyful, but we also had our first blowout away from home and our first puke in the car. The important thing is that we are surviving all of these firsts and smiling through it all because we are just so stinking (sometimes literally) happy to have the problem of a blowout or a puke instead of inpatient problems. John and I are being blessed with so much joy in her care because we are very aware of how close we came to losing the opportunity to have a beautiful baby girl to care for every day. The last few days have been peppered with surreal moments of realizing how weird it is to hear the sound of a baby in our condo – I mean holy Toledo we have a baby and we’re parents and this is real!!!!
Mom is taking some time off work soon to enjoy a few weeks of nonstop family time and mimic a mini-Maternity leave now that we actually have a baby at home!! We are so excited to be settling into life as one happy little family. Her med & feeding schedule continues to be a challenge to get on top of each day. She has so much medicine throughout the day! At the hospital everyone came to see Hope in her own room so her med and eating schedule was no so easily disrupted as it seems to be at home. We are trying to be patient with ourselves and rest easy in the idea that the only real solution is time and practice that will make her daily routine smoother and second nature. Until that happens, we might be a little frantic and neurotic – just be patient with us if you see us!
We hope our updates continue to be full of a bit more boring material as Hope settles into more of a typical baby routine, but we promise to keep the updates coming if for no other reason to share the joy of her accomplishments and smiles after enduring such diversity with all of you that have prayed and endured along with us in this journey. It truly does take a village and we are so grateful to everyone that has been there to lift us up over the last six months. We truly couldn’t have made it through this without the support of our family and friends. For now enjoy some cute pics of Hope and virtual hugs from this little Sansbury family to all of you!
Ready for labs – thanks for the shades Samuel!!
Asleep at home – napping in my own bouncy seat!
ready for my first pediatrician visit – and the whole office was soooooo excited to meet Miss Hope for the very first time.