A Dream is a Wish Your Heart Makes

For the last few days, having Norah at home has felt like a dream. It's been wonderful, stressful, tiring, and an absolute dream come true. 

South Davis gave us the most amazing send-off. We arrived at about 10:45am. Much of the staff wore pink tops, while others donned pink leis for our honorary code pink. (Thanks to all of you out there that wore pink! we loved seeing all of the photos of everyone celebrating from afar!) Two of her nurses, Nikki and Savannah came in on their day off. We were all ready as ever for the big day.

They presented us with gifts, including books that made us all cry. For me, it was a big ugly heaving sob. We packed the remainder of Norah's things, and switched her to our home equipment. The room was filled with so many people. As we wheeled out toward the elevators, the charge nurse Lorey called over the PA system to announce our "honorary code pink". She's not an emotional person, but she was crying. We all were. 

When we reached the lobby, it was packed full of both patients and staff. They clapped and cheered for us as we left the building. We had done it. Almost 23 months without a single day missed in the hospital. 

We took photos outside. Jaci Cecily, and Grami Patti (Cecily's mom) had come too. Cecily expressed to Bobbi (one of Norah's primary nurses) that she knew how much it hurt to discharge Norah. I gave everyone hugs. Once all loaded into the car, we insisted that they all have their own little goodbyes with Norah, including kisses. We were discharged. They are now our friends instead of our care team. HIPAA be damned, they were getting their kisses!

We pulled into our driveway to find pink tissue flowers decorating the house, along with a hot pink sign on the door that declared "CODE PINK". Cecily and Jaci had been pretty sneaky!

So how have we been doing? Fantastic. Sure, we've cried tears of joy and anxiety. We've already had to do an unscheduled trach change. We've been trying to find a groove with her cares. We don't have a nurse yet (aside from Cecily spending the night on Wednesday, and Jaci coming over on Thursday!). But I am in heaven. Last night, Jeff was holding Norah while I held Harper. It was perfect. It's hard to ask for anything more than having our entire family under the same roof. 

Thanks to all of you who helped make this possible. To those of you who babysat Harper during Norah's surgeries or rough PICU days... To those of you who donated money... To those of you who squeezed a bag to turn her color from blue to pink... To those of you who performed CPR on that awful day... To those of you who treated and cared for Norah, To those of you who have sent love and well wishes... I thank you all for your support and care. 

Please stay tuned as we tackle this next adventure. 

Easy As Breathing

You have likely heard of the phrase "as easy as breathing", or "as natural as breathing". For some people, breathing doesn't come so easy. When Norah was a newborn, she was constantly telling us that she needed help breathing. Even today, it is loud and clear when something is wrong. She sometimes grabs our hands to put them on her suction ballard when she needs suctioning.

Norah breathing without the
ventilator!

But today, Norah accomplished something that had multiple people (especially me) crying years of joy. For twelve minutes, Norah was breathing without the ventilator. 

We connected what is called a trach mask to her, instead of the ventilator. The trach mask simply expells moist oxygen into the airspace just outside of her trach. So with each independent breath, she was getting an extra puff of oxygen. Think of an oxygen mask that covers the mouth and nose, but designed for the trach instead.

Norah has tracheomalacia, also referred to as an overly floppy airway. The trach tube stents her airway open while the vent opens up her airway and lungs. Because of this, they considered that she may fail the trach mask trial. I knew she wouldn't. I knew she could do it. She is strong, brave, and amazing. Most of the people in that room had seen Norah at her worst as a baby. We're all amazed at how far she's come. But what's more, is that we are so excited about the future. Norah will someday come off the ventilator. Then she will someday be able to be trach-free. She may have hardships ahead with her multiple medical needs, but there is hope. We have never given up hope on Norah. Breathing may not be easy, but Norah perseveres. We all do. 

PS: She will be home with us in less than one week!

Code Pink!

For the overly superstitious out there, you may not want to read this post. Some believe that assigning a discharge date will jinx her chances of coming home on that date. 

The only things that could delay her coming home on our target date would be a problem arranging home nursing (for weeknights), or some sort of acute illness. 

As it stands, our goal is to discharge on Tuesday, June 18.

I've long carried an empty threat of "pulling a Code Pink", which is the standard hospital code for when a patient goes missing. Many of Norah's caregivers have joined in on grandiose schemes to bust her out of the hospital. In honor of finally getting to pull our code pink, we would love for everyone to wear pink on our discharge day. (Credit for this idea goes to one of my bestest friends, Jaci!) I'll keep you all posted on the day to wear pink. 

Readiness

Norah's ventilators: a sight for sore eyes.

This is really happening. Tomorrow morning (Tuesday), Norah will have been on the home vent for two weeks. On Wednesday, we'll be formally setting a discharge date. A DISCHARGE DATE!!

Am I nervous? Yes and no. We are so totally ready, but of course I have a natural amount of worry. Norah's life will now be in our hands. The reality of having a child dependent on technology and interventions, is that bad things can happen anytime and anywhere. They can happen at home or the hospital. They can happen in bed asleep or awake and active. They can happen under any circumstance. We have lived with this stress for the last two years... The only difference is that we'll now be the healthcare providers. And I couldn't be more thrilled.

We have had a lot of time to learn everything we could about Norah's needs. I can't tell you how many times I've been asked (even by doctors) if I'm in healthcare. I always giggle and tell them that it only seems that way because I know Norah really well. So we've learned to care for her, just as one would hope any parent would care for and love their child. Norah's needs just happen to be a little more complicated.