Sweet Home AL to Home Sweet Home

After Daphne was discharged from the hospital, we moved into a hotel while we waited for Alabama and Utah to review our adoption paperwork and give us permission to cross state lines (this approval process is called ICPC). Hoping to expedite things, we submitted everything except Daphne's discharge summary to Alabama as soon as I got into town. Unfortunately, Alabama couldn’t approve anything without the discharge summary, and we couldn’t get that until the morning of discharge—a frustrating conundrum.

While Daphne was in the hospital, our lawyer tried to encourage Alabama’s ICPC coordinator to take a look at our other paperwork and let us know if anything else was missing, but she resisted. We’d been told that her review could take up to two weeks, so we felt frustrated by her attitude. I didn’t know her reasons for waiting, but I assumed that, in her line of work, everyone wanted to be treated like an exception, making her very reluctant to make one. But I kept thinking, if ever there were a time to make an exception, surly it would be for a baby who just had heart surgery.

When Daphne was finally discharged on Wednesday, February 16, we faxed the discharge summary and a medical letter requesting expedited approval to the ICPC coordinator. Will believed we would receive ICPC approval before the weekend, but I wasn’t as optimistic. I thought we would be in Alabama at least another week. In the end, Will was right. I received a phone call from our lawyer at 8:30 a.m. on Friday, February 18, saying that Alabama had sent approved paperwork to Utah and Utah had given verbal approval for us to come home. My heart started racing and my stomach tightened with excitement. I felt giddy, anxious, shocked, and delighted.

I pulled out my computer and began searching for flights out of Birmingham—nothing until Sunday morning. That seemed like an unbearably long time to wait. I called Will to report the disappointing news, and he suggested searching for a flight out of Atlanta, just 2.5 hours away. I searched through Expedia and found a Saturday morning flight with just two seats left—clearly another gift from heaven. I booked it without a plan for getting to Atlanta.

While my mom arranged for a rental car, I got Daphne ready for the day and began packing. By noon, we had checked out of the hotel and were on our way into town. Before heading to Atlanta, we had to return an oxygen tank to the medical supply company, pick up a revised medical letter for the new airline, pick up a rental car, and return the car I had borrowed from a local Church member. The errands seemed to take forever, but by 3:00 p.m., we were on the road to Atlanta.

The drive to Atlanta was smooth and uneventful. My mom and I drove straight to the airport and checked into a nearby hotel. When I woke in the morning, my stomach was tied in knots, and it stayed that way until I reunited with my family in Salt Lake City.

We arrived at the airport at 5:30 a.m., beating the rush. Getting through security with oxygen was much simpler than I expected. The Atlanta TSA agents were very kind, careful, and efficient. During our first flight (Atlanta to Phoenix), my mom and I had an entire row to ourselves, making it easy to care for Daphne in flight. She slept soundly during the flight and maintained stable oxygen levels. The medical supply company that provided the portable oxygen concentrator also gave me two rechargeable batteries that should have lasted 4.5 hours each, but halfway through our 4-hour flight, the first battery died. The second one seemed to be holding its charge better, until it started beeping during landing. When we arrived at the airport terminal, we had just 30 minutes before our next flight began boarding. I plugged in the oxygen concentrator and let it charge until the flight attendants forced me to board.

Our second flight was supposed to be less than 2 hours, so I felt confident that we’d have enough battery life to last through the flight. Before takeoff, several flights were redirected, and we ended up sitting on the tarmac for an extra 30 minutes. With just 45 minutes left in the flight, the battery began beeping again. I panicked. My mom called the flight attendant. I started to cry, not because the battery was failing (I was sure we could figure that out) but because I felt like a bad mother and I didn’t want to cause trouble for other people.

The flight attendants were very kind, assuring me this wasn’t the worst in-flight emergency they’d faced. They took me to the back of the plane, where I sat on the jump seat and plugged the oxygen concentrator into the plane’s power. I stayed there until it was time to land; then I went back to a regular seat. After landing, I returned to the jump seat while everyone else deplaned; my mom and I exited last.

We rushed to the baggage claim, where Will and Shelby were waiting to greet us. When I saw them, the knots in my stomach disappeared and I felt relieved—relieved to be safely on the ground, relieved to have my eternal companion within arm’s reach, relived to have both of my girls in one state, relived to be home at last.

Discharge Postponed

Apparently, Daphne isn't ready to say goodbye to all the nice doctors and nurses who have been taking such good care of her. Last night, her oxygen levels began to dip, and they've spent a fair amount of time below her lower threshold throughout today. The doctors and nurse practitioners agree that she isn't ready to be discharged tomorrow; they're going to observe her over the weekend and then decide what to do.

I’m pretty disappointed and discouraged by this unexpected turn of events, although I fully support the medical team’s decision. Daphne seemed to be doing so well, but evidently, something isn’t quite right. The worst part is that there’s nothing I can do to help her improve her stats. I just listen to the monitor ding, over and over, and watch the numbers fall. Then they rise for a little while, before it starts all over again. She still looks great and is breathing steadily; but something has changed, and no one knows what. 

This morning, the doctors did an x-ray to check for fluid on the lungs and an echocardiogram to check blood flow to the lungs. Based on what they could see, things looked good. Tonight the neonatologist, Dr. Toms, suggested we put Daphne back on Lasix to see if that would help dry out her lungs even further (that’s a good thing). She was taken off Lasix two days ago, so that could be the variable affecting her recovery. If Daphne’s stats stay low after we put her back on Lasix, we’ll have to move on to a heart catheterization to explore the blood flow in more detail.

I was really looking forward to being discharged, because we can’t submit the final paperwork for ICPC until we have hospital discharge papers. But if Daphne had to take a step back in her recovery, I’m glad it happened before discharge, while she was still hooked to her monitors. This experience has made me more concerned for the future. Even though her stats are low, she looks good. After discharge, how will I know if her oxygen saturations are low? How will I know if she’s struggling? I wasn’t worried before, but I am now.

Today was a tough and lonely day. Watching my baby struggle was hard and frustrating. I miss my family, and I wish we could all be together. My mom will be joining me in Alabama on Saturday, and I look forward to seeing her. It will be nice to have someone to talk to face to face (although I have appreciated all the phone calls, e-mails, and comments from friends and family).

Let’s hope Daphne bounces back quickly and is ready for discharge early next week.

 

The Road to Recovery

Each day, I am reminded that our family is in the hands of the Lord and that He has power to work miracles in our day. He began watching over and blessing Daphne long before birth, and He has continued to bless her through her surgery and recovery. I am amazed at how well she has done post surgery. She is making a speedy recovery and looks better every day. The doctors have been so impressed with her progress that they are planning to discharge her this Friday, February 11. It looks like our heart baby will be out of the hospital before Valentine's Day!

Daphne's recovery has been swift, but she's had to overcome a lot of hurdles in the last week. Here's a quick summary of her medical journey:

Recovery Timeline

Thu 2/3: Surgery completed, sedated over night, given pain medicine and Heparin to thin blood
Fri 2/4: Pain medicine stopped, Heparin replaced with baby Asprin, nasal tube removed, taken off ventilator and given supplemental oxygen, taking a bottle every three hours
Sat 2/5: Central line and right arm IV removed, transfered from CICU to RNICU, weight: 5 lb. 7 oz., given Lasix to expell excess fluid, placed in a warming bed to regulate temperature
Sun 2/6: Neck IV removed, swelling completely gone, weight: 4 lb. 7 oz.
Mon 2/7: Warming bed turned off
Tue 2/8: Supplemental oxygen removed, last Lasix treatment received, eating well, weight: 4 lb. 10 oz.
Wed 2/9: Hearing screening passed, eating 40-60 ml per feeding, weight: 4 lb. 8 oz., discharge scheduled for 2/11
Thu 2/10: PICC line removed

Sadly, we won't be able to travel home right away. We still have to wait for ICPC to clear, which could take days or weeks. (ICPC is basically adoption paperwork that has to pass between Alabama and Utah.) We're hopeful that everything will work out and that we'll be able to return home next week.