The Power of the Comforter

Daphne passed away exactly six weeks ago, today.

Some might call Daphne’s story a tragedy, because we worked so hard to find her and then we lost her long before we were ready to say goodbye. But I think of her story as a miracle, and I don’t want there to be any confusion about that.

In her premortal life, Daphne chose Heavenly Father’s plan. She wanted to come to earth, receive a body, and experience mortal life. She wanted to have a family. She knew that her mortal body would be imperfect and that she would enter this world alone. But she loved God, and she trusted Him.

God knew Daphne’s life would be brief, but because of her faith, He gave her a special calling to heal the broken heart of her mourning mother, to bring her family closer to God and to each other, and to show the world that no life, however short, is wasted in God’s eyes.

In just two months, Daphne experienced a lifetime of pain and joy. Living with just half a heart, she spent all but three days of her life either in the hospital or on supplemental oxygen. She endured three extended hospital stays, two surgeries, one heart catheterization, and countless needle pricks, blood draws, and other tests. But she was always a mild, content baby, who never cried without just cause. When I held her or looked into her eyes, I couldn’t help but marvel at the radiance of her spirit. Although her body was small, her spirit was clearly much wiser and more mature than mine. When I held her, I felt calm and hopeful, and I knew that I could trust God.

When Will and I chose to heed the promptings of the Spirit and adopt Daphne, I thought to myself, “If the Lord went to all this trouble to bring us together, surely He means to preserve her life and let us keep her for many years. Surely, He won’t take her away too soon.” I was hopeful that the Lord would perform a miracle—that He would help Daphne overcome the odds and live an exceptionally long life. But in my heart, I knew that this was not the miracle God intended to perform. He meant to perform a much greater miracle—to create an eternal family, a family that would survive beyond this life, a family that would not be broken by death.

Our family was blessed to have Daphne here on earth for two incredible months, and during that time, we felt an outpouring of the Spirit stronger than we had ever known. When Daphne passed away, our hearts ached and our arms felt empty. We mourned for the time we would have to spend apart. We grieved because we would not see her face for a while. For us, the separation would be long, but for her, the separation would be brief.

Even in our grief, we felt the peaceful reassurance of the Spirit carrying us from one moment to the next. I expected to be a miserable mess, unable to get on with my life, but the Spirit buoyed me up, and I found that I felt calm, peaceful, and comforted. I still trusted God, and I still knew He loved me. I had been taught that the Spirit was also called the Comforter, but I had never understood how powerful that comfort could be. The Spirit did not take away my sorrow or stop my tears—I would not have wanted that—but it gave me courage and hope. It reminded me not to give up and whispered that the best way to honor Daphne’s life would be to live well, serve others, trust in my testimony of the gospel, and find ways to share Daphne’s story.

Don’t misunderstand: my grief is profound. I am a 27-year-old woman who sleeps with her absent daughter’s blanket. I think about her every day, and I imagine what it would be like to have her with me at this very moment. Since the funeral, there have been many difficult moments: the moment I stumbled on her formula cooler in my mother’s refrigerator, the moment I realized our fish would outlive my daughter, the moment I realized I would never get to make Daphne a birthday cake. But the worst moment was when I could no longer imagine Daphne’s exact weight in my arms. I could see myself holding her and remember what it felt like emotionally, but I couldn’t remember the physical sensation. And I knew that I would never get that feeling back. I could hold an object or a baby that was exactly her weight, but it would never be the same.

There are so many memories of Daphne that I haven’t shared yet, and there are also new stories about our family that need to be told. For some reason, I don’t feel comfortable going forward with new stories on this blog without finishing Daphne’s story. But Daphne’s story will be a work in progress for a long time to come, so I’ve decided to start a separate blog where I can reflect on Daphne’s life, share my grief, bear my testimony, and reminisce about my bright-eyed heart baby. The new blog will give me a place to collect random thoughts about Daphne. This blog will continue to focus on my entire family, including Daphne. Separating these two parts of my life will allow me to keep Daphne’s story alive, while also allowing me to press forward, as I know Daphne and my Heavenly Father want me to do.

If you're interested in keeping up with Daphne's story, you can visit daphnejanegainer.blogspot.com. There’s nothing there right now, but there will be soon.

Thanks for all your love and support. We could not have made it through the last six weeks without our wonderful family and friends.

Miracles Have Not Ceased

Since I wasn’t able to attend fast and testimony meeting on Sunday, I’d like to take this opportunity to share my testimony with my family and friends.

Today my heart is filled with gratitude to my Heavenly Father. The events of this past week have reminded me, once again, that He is intimately involved in my life. He knows me, He knows my family, and He knows my new daughter. He loves us, and He has big plans for our family. He wants more from us and for us, and He has sent us a special child to nudge us down a new path.

Over the last weeks, He has granted Will and me peace in difficult moments and offered us hope through the power of the priesthood. We have already been abundantly blessed for welcoming Daphne into our home, and I know that many more blessings are in store.

Heavenly Father is a God of miracles, and our family has witnessed His marvelous power firsthand. A week ago, we were told that Daphne’s first surgery would need to be repeated. But last Wednesday, she surprised everyone by achieving post-surgery results without medical intervention. I’m sure acclimation to Utah’s altitude and her blood transfusion played a role, but I credit this miraculous recovery to a merciful and loving Heavenly Father. He has shown us His power, and we cannot doubt.

I’ve often heard people say, “God will never try us above that which we are able to bear.” But I think it would be more accurate to say that God will never ask us to bear a burden that He cannot help us endure. Over the last 5 weeks, I’ve come to more fully understand the scripture in Psalms 55:22 that says, “Cast thy burden upon the Lord, and he shall sustain thee: he shall never suffer the righteous to be moved.”

During our mortal experience, we are asked to bear many heavy burdens—burdens that have no earthly end, that leave us feeling helpless and broken, that we cannot imagine surviving. We cannot bear these burdens alone, but when we turn them over to the Lord, He can bless us with the courage and spiritual stamina to press on.

The past has taught me that trials often lead me down a better path—a path I could not see, a path I would not have followed on my own, a path filled with more joy and more spiritual growth. Before I was married, I imagined that the worst trial I could face would be the inability to bear children. But when this fear became a reality, it also became one of my greatest blessings. Without that trial, I would not have searched elsewhere for my two beautiful girls, who have filled my world with hope and happiness and who have taught me more about the nature and love of God than I could ever have learned on my own. God knew me well when He sent me down the adoption path.

Of course, I haven’t always endured my trials well. Before we found Daphne, we had another adoption fall through. We had been matched with the birth mom for 5 months, over half her pregnancy, so when she disappeared unexpectedly, I was devastated. For months, the grief was so overwhelming that I felt like two people living inside a single body: the dependable half went about her normal routines like an automaton; but the other half—the more loving, joyful half—curled up in the fetal position, unable to process the pain. I still had a testimony and knew that God loved me, but my sorrow separated me from God. I was afraid to let the Spirit heal my heart, because I didn’t want to let go of the little girl we lost. But over time, as I continued to read my scriptures and exercise faith bit by bit, I began to feel whole again. And that’s when God sent me Daphne.

Daphne’s medical condition comes with many new fears, and every day, I wonder how long she will be with us. The answer is beyond my control, but it is not beyond God’s. He will preserve her until she completes her earthly mission, and that is all I can ask. Our failed adoption taught me the loneliness of despair, so this time I choose hope and faith.

I feel honored that my Heavenly Father would believe me capable of handling the uncertainty, the fear, and the grief that will undoubtedly come with caring for Daphne. He has entrusted me with two very special spirits, and I feel a sacred obligation to live up to His expectations. Despite my shortcomings, I hope that I will become the mother my girls deserve and that I will make my Heavenly Father proud. I know that if I do my part, we will all be together in the eternities.

In the name of Jesus Christ, amen.

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.

Phase One Complete

It’s official: Daphne has been discharged from the hospital, and we’ve moved into a hotel, where we’ll spend the duration of our time in Birmingham.

Getting to this point hasn’t been easy. From a medical standpoint, Daphne has done remarkably well, experiencing a swift and uneventful recovery. But the logistics of getting her out of the hospital and home to Utah have been complicated and time consuming to arrange.

First, we had to make arrangements for follow-up care. When Daphne gets home, she’ll need a pediatrician and a cardiologist. Since UAB wanted to fax Daphne’s medical records to her Utah doctors, I contacted our pediatrician to have her added as a patient, and the medical team focused on finding her a cardiologist. Initially, they scheduled an appointment with one doctor, but then Daphne’s Alabama cardiologist, Dr. Carlo, made a special request to a former colleague with a closed practice and asked her to accept one more patient. Scheduling an appointment was a joke, since Daphne needs to get in as soon as possible but we have no idea when we’ll be home. Try explaining that over the phone without driving the receptionist crazy!

Next, we had to arrange for Daphne to have portable oxygen for the flight home. This was a two-part project. First, the nurse practitioner had to prepare a letter for the airline, explaining the need for the oxygen and describing the equipment. When I schedule my flight, I’ll have to let the airline know that I’ll be traveling with oxygen, and I’ll have to arrive extra early so that they can examine the equipment.

Second, we had to convince a medical supply company here in Birmingham to let me take very expensive equipment across state lines. This was by far the most challenging obstacle to Daphne’s release. It took our Alabama social worker, Suzanne, two weeks to make the arrangements. As you can imagine, no company was anxious to accept the risk of working with an out-of-state stranger or providing for a pediatric patient outside its area. Once Suzanne found a medical supply company willing to accommodate our strange situation, it took countless, lengthy phone conversations to resolve their lingering reservations. At first, the company was confused about whether the oxygen was necessary; then they were concerned about getting the equipment back. They were compassionate people who wanted to help, but they also needed to limit the company’s risk. Ultimately, I had to pay a rental fee, agree to ship the equipment back, and sign a promissory note agreeing to pay for the equipment if I didn’t return it. Once everyone agreed to these terms, we began preparing to leave the hospital.

We had hoped to be discharged early Wednesday morning, but we had to wait for Daphne’s portable oxygen to be delivered. At 4:30 p.m., a representative from the medical supply company arrived, pushing a cart weighed down with two different oxygen tanks, two chargers, an extra battery pack, a humidifier, extra tubing, and a pulse oximeter. There was so much stuff! I was caught completely off guard. Suddenly, I realized that leaving the hospital wouldn’t make Daphne any more portable. She had been shedding IVs and monitors since surgery, giving me time to imagine life without tethers. So even though I knew she would be leaving the hospital on oxygen, I didn’t think about how bulky and breakable the equipment would be. When the oxygen representative arrived, I caught a glimpse of my new life with two girls, and I realized, for the first time, that even moving from one room to another would be challenging. I shouldn’t have been surprised by this vision, but I was.

After the oxygen orientation, it was time to pack up and leave. I thought I would feel elated when this moment arrived, but in the final minutes, I found myself fighting back tears. I wasn’t sad to be leaving friends behind—I had said my goodbyes—but I did feel alone. For the last two and a half weeks, Daphne and I had been cared for by an incredible team of doctors, nurse practitioners, nurses, and social workers. These people had been Daphne’s advocates and my teachers. But that night, for the first time since arriving at UAB, I felt like Daphne and I were being cared for by strangers who weren’t personally invested in our journey. They were still kind and competent, but we didn’t share that deeper bond that comes from fighting the same battle.

After a few moments, the sadness passed, and I was ready to leave. In Alabama, you can leave the hospital in one of two ways: (1) holding the baby while sitting in a wheelchair or (2) rolling the baby out in her crib. Since I didn’t give birth to Daphne, it didn’t seem appropriate for me to sit in a wheelchair. So we buckled her into her car seat and put the car seat in the crib (I wanted to make sure she would fit and the oxygen tube wouldn’t get tangled). My mom went to get the car, while Daphne and I were escorted to the loading zone.

Now that we’re settled in our hotel, I feel more at ease. Although the hospital staff did a fantastic job of including me in Daphne’s recovery, allowing me to care for her with relatively little supervision, it is still relieving to be on my own (well, with my mom), away from the watchful eyes of so many helpful nurses. I no longer have to report every dirty diaper or wait for someone else to deliver Daphne’s next meal. I finally feel like a full-time mom.

Our first night in the hotel went pretty well. Daphne’s pulse oximeter keeps track of her heart rate and oxygen levels, but it doesn’t have an alarm, so we have to keep a close eye on the numbers to make sure she stays in range. I dozed with the pulse oximeter in view so that I could check Daphne’s stats throughout the night. She slept fairly well, although she was a little restless from about 1:00 to 3:30 a.m. She’s not much of a crier (unless she’s being poked with a thermometer), but she does grunt and wiggle when she’s uncomfortable.

What’s next? Well, now we wait some more. Since we can’t take Daphne out in public, we’ll be hanging out in our hotel room until we receive word that the legal paperwork has cleared. Then we’ll hop on the first flight to Utah and pray the snow doesn’t prevent us from getting home.

An End in Sight

Good news: no heart catheterization! The echo confirmed that Daphne's BT shunt is completely clear. Daphne will be discharged as soon as we can make final arrangements for her portable oxygen (not an easy task). We're aiming for tomorrow. Everybody, pray hard!

Love Is in the Air

Happy Valentine's Day from our sweet heart baby and her proud mama!

This weekend was all about monitoring and mapping Daphne’s natural oxygen range. The doctors want to see it consistently above 75 percent, but Daphne’s body seems to spend more time between 70 and 80 percent. This range isn’t ideal, but it isn’t necessarily concerning. This lower range is most likely a result of her small subclavian artery and should improve as she grows.

To determine if this range is acceptable or problematic for Daphne, the doctors ordered another echocardiogram today. We’ll hear the results tomorrow. I think the doctors are hoping to avoid a heart catheterization, since it would mean a minor procedure involving sedation and a ventilator. If things look good on the echo, I think Daphne will be discharged in a couple of days. If there’s still uncertainty about the blood flow to her lungs, they will go ahead with the heart catheterization.

Because there’s less oxygen at higher altitudes, Daphne will need supplemental oxygen for the flight home and, most likely, after we land until she adjusts from Alabama’s to Utah’s altitude. Since Daphne will need this little oxygen boost after discharge anyway, the doctors have decided to put her on it now so that they can get her levels figured out before she leaves the hospital. They will aim to maintain her levels between 75 and 85 percent, just above her natural range. Before discharge, they’ll teach me how to read the pulse oximeter and make necessary adjustments.

Let's all pray for good news tomorrow.

Is No News Good News?

When Daphne's oxygen levels dropped on Thursday, Dr. Toms put her back on Lasix to see if that would help. At first, it seemed to make a difference, because her oxygen levels picked up for a while. But eventually, her levels dropped again, and it became clear that the lift was just part of a random cycle of rising and falling stats.

At this point, the doctors are vigilant but not panicked. Because Daphne still looks good and doesn’t seem to be in distress, the neonatologist and cardiologist on duty have decided to hold off putting her back on oxygen. Tomorrow Daphne’s regular team will evaluate her stats from the weekend and decide if she needs a heart catheterization. Since she hasn’t shown any progress, I’m assuming that will be the next step.

So why the low oxygen levels? There are several theories, but they all revolve around reduced blood flow to the lungs: (1) There could be a clot in the BT shunt. (2) The ductus arteriosus could have taken part of the pulmonary artery with it when it disappeared, causing narrowing and reduced blood flow. (3) Or, the leading theory, Daphne’s extremely narrow subclavian artery may not be pushing enough blood through the BT shut. Let’s hope we learn more in the coming days.

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.

Family Reunion in AL

Will, Shelby, and my mother-in-law, Judy, arrived in Birmingham on Friday afternoon and stayed through Monday evening. Seeing them again, especially after such a difficult week, was just what I needed to help me relax and refresh.

When they arrived, Daphne was still in the CICU, where patients were housed in an open room and separated by curtains. Daphne had been extubated (taken off the ventilator) and placed on supplemental oxygen, but she was still hooked up to the other post-op IVs and monitors.

Initially, I didn’t plan to take Shelby into the CICU, because I worried that seeing Daphne like that would frighten her. But when she asked to see Daphne, I realized that keeping them apart would only confuse her. She needed to bond with her sister and see for herself what was keeping me away. Before taking Shelby into the unit, I sat her down and explained that Daphne had a problem with her heart and that the doctors were trying to fix it. I told her that Daphne would be covered in band aides to help her feel better. Shelby seemed to accept this simple explanation.

We approached Daphne’s bed as a family, Will at my side and Judy holding Shelby. Daphne was wrapped in multiple blankets, which concealed the IVs and cords, and she was sitting in a baby bouncer on top of her bed. The pacifier in her mouth hid the oxygen tube in her nose. She almost looked like a healthy newborn.

Will took Daphne’s tiny hand in his and spoke to her in a soothing voice; then he introduced Shelby to her sister. We encouraged Shelby to hold Daphne’s hand, touch her hair, and talk to her. She didn’t hesitate at all and was very gentle. During our visit, Will helped Shelby feed Daphne, and we all took turns snuggling her. When Shelby got restless, Judy took her to the waiting room, giving Will and me a few minutes alone with our new daughter. Seeing Will hold Daphne for the first time was incredible, because I could see the love and devotion in his eyes. On the drive back to our hotel, I praised Shelby for being such a good big sister and for being so gentle and helpful. With sincerity in her eyes, she proudly responded, “I didn’t hit her, Mom.” I have to agree, that’s a good start.

 

On Saturday morning, Daphne was strong enough to be transferred back to the NICU, which meant a personal room and no visiting restrictions. We spent the day at the hospital, taking turns holding her. Shelby showed sporadic interest in Daphne, but for the most part, she just wanted to play. Judy was a lifesaver; she did a fantastic job of keeping Shelby happy by taking her to the children’s playroom or on walks to explore the hospital. Shelby was fascinated by the statues of children sitting on benches that she found in one hallway.

 

 

On Saturday and Sunday, we spent time with Uncle Dan and Aunt Nora, who made the 4-hour drive from Tennessee to see us for less than 24 hours. We haven’t seen them since Randy’s funeral, so they got to meet both Shelby and Daphne for the first time. Dan and Nora are so friendly and thoughtful. It was wonderful to see them and to feel their love and support.

Over the last two weeks, Shelby’s world has been turned upside down and reinvented. She’s been a real trooper, but the changes have been hard on her. During our little family reunion, we wanted to spend time away from Daphne and do something just for Shelby. So on Monday morning, we took her to the McWane Science Center, a children’s museum featuring fun gadgets, hands-on science experiments, an indoor playhouse, a mid-size aquarium, and a dinosaur display. Shelby loved having the freedom to run and play; it was a little like being at home, where I take her on outings every week. The science center was fun for everyone; in fact, I think Will had even more fun than Shelby.

After the museum, we stopped back at the hospital so that Will, Shelby, and Judy could kiss Daphne goodbye; then I drove them to the airport to catch their flight. It was a short visit but just what I needed to make it through the next week or so. I can’t wait for all of us to be together at home.

The Agony of Waiting

Daphne’s surgery was scheduled for Thursday, February 3, at 1:00 p.m. I slept at the hospital on Wednesday night, because I couldn’t bear to leave Daphne alone before her big day. We spent Thursday morning curled up in a rocking chair, snuggling and comforting each other. In the early hours, I felt calm and confident, but as the day progressed, my stomach gradually tightened, my heart began to race, and my right arm started to twitch. One o’clock came and went, and our nurse Regina still hadn’t heard from the operating room (OR). My anxiety increased with each passing minute. I worried about the moment of separation, and I worried that the surgery would be postponed. Both seemed like terrible destinies.

Around 2:00 p.m., we received word from the OR. Regina placed Daphne in a portable incubator, and we wheeled her through a maze of corridors to another building in the hospital complex. We stopped in the middle of a distant hallway outside a set of double doors. Fortunately, they didn’t whisk Daphne away as I expected. We waited in the hallway for about 15 minutes, and I was allowed to touch her through a porthole in the incubator. I ran my hand over her soft, curly hair, touched her itty-bitty hands, and gave her (and myself) a little pep talk. I didn’t cry, but my heart ached.

 

Eventually, the anesthesiologist joined us in the hallway to outline her role in the surgery. She explained the risks of anesthesia, as required, but assured me that Daphne would be under constant supervision and that she would be in good hands. I had to trust her, otherwise, how could I put my daughter in her hands?

After that, I expected them to wheel Daphne through the double doors and down the hall while I watched, but instead a nurse guided me away, leading me to a waiting room. I suppose that was the easier of the two scenarios. It was difficult for me to leave Daphne, but as least it was voluntary and she wasn’t ripped from my arms.

I planned to be alone during the surgery, but my mother, feeling helpless in Utah, called the mission home here in Birmingham, Alabama, and asked the mission president if he could send someone to sit with me. He sent two senior sister missionaries, Sister Sommerfeldt and Sister Dunbar, to keep me company. What an incredible blessing! These sweet sisters brought the love of the Lord with them and provided the perfect distraction to keep me from fretting and pacing while Daphne was in surgery. Within minutes of their arrival, we were talking like old friends. After I shared my story, we discussed their families, the gospel, the missionary work in Alabama, and our impressions of the Birmingham area. Talking was therapeutic and comforting. It kept me sane and gave me courage. Isn’t it incredible that as members of the Church we belong to a worldwide family, where we can always find comfort and refuge, no matter how far we are from home? What an amazing gift from a wise and loving Heavenly Father!

When Daphne’s surgeon, Dr. Kirklin, met with me, he told me that, if everything went as expected, the procedure would take about three hours: one for the anesthesia to take effect and two to insert the BT shunt. When I checked my watch at 5:45 p.m., Daphne and I had been apart for almost 3.5 hours, and I assumed I would be hearing from Dr. Kirklin very soon. I wasn’t worried, because I knew that even minor delays would add up. At 6:00 p.m., the waiting-room receptionist checked the operation log and saw that the start time for Daphne’s surgery was listed as 5:00 p.m., which made absolutely no sense, so he suggested we call the OR for an update.

As the OR nurse spoke, my heart sank. He explained that, because Daphne was so small, the anesthesiologist had trouble accessing her veins. It took 2.5 hours to sedate her, so Dr. Kirklin didn’t start operating until 5:00 p.m. The nurse assured me that things were going well and that Dr. Kirklin didn’t seem concerned. Despite that, I felt distraught. I had thought we were nearing the finish line, but really, we were only halfway through the procedure. I cried for a bit and reported to Will and our parents. Eventually, I regained composure and resumed my vigil with Sister Sommerfeldt and Sister Dunbar.

At about 8:00 p.m., a nurse called my name and directed me and my guests into a smaller, more comfortable waiting room, where we waited for Dr. Kirklin to give his post-op report. At that point, I knew Daphne was out of surgery, and I felt a surge of adrenaline flow through my body. I felt relieved, elated, apprehensive, and grateful to my Heavenly Father. She was safe, and I would see her very soon—although, honestly, those last minutes were some of the hardest to endure.

After 20 minutes, Dr. Kirklin stopped by to let me know that the procedure had gone smoothly. He explained the delay with the anesthesia and also noted the miniature size of Daphne’s subclavian artery (the part of the aorta where he attached the BT shunt). During surgery, he took Daphne off Prostaglandin, the medicine keeping her ductus arteriosus from disappearing, and put her on Heparin, a blood thinner to prevent blood from clotting in her shunt. He said that the ductus arteriosus would disappear within 24 hours, and then we would find out if the surgery worked. That was terrifying news, because it meant Daphne’s safety net would be gone for good. For a moment, I panicked. After the surgeon left, I said goodbye to Sister Sommerfeldt and Sister Dunbar, and a nurse led me into the CICU (Cardiothoracic ICU).

I’ve always been a bit squeamish, so I felt apprehensive about seeing Daphne after surgery. I had been warned that she would be extremely swollen and hooked to a number of new tubes and monitors, including a ventilator, and I knew she would have a fairly large incision in her left torso. I worried that her condition would overwhelm me, and that fear made me feel like a terrible mother.

But I needn’t have worried. When I saw her, I was filled with relief and joy. She looked so beautiful and so much stronger than I expected. Her face and extremities were very swollen—especially her little lips, which bulged around the adhesive holding her ventilator in place. The skin on her forehead was dry and flaky from a monitor that had been used to track the oxygen levels in her brain during surgery. A thin tube attached to a syringe had been threaded through her nose and down to her intestine to help release excess air. She was receiving Heparin through the PICC line in her left arm but wasn’t on any pain medication yet. She had two new IVs (one in her neck and one in her right arm), plus a central line in her right wrist to monitor her blood pressure. The incision in her left side started below her armpit and curved up toward her shoulder blade. Just below that was a chest tube allowing excess fluid to drain.

I stood at Daphne’s bedside, running my fingertips across her skin and through her hair. She was still heavily sedated, but every now and then, her eyes flickered open, which I found reassuring. I stayed with Daphne until 10:00 p.m., when I finally became so exhausted that I feared I would collapse right there; then I returned to the Ronald McDonald House, where I slept soundly for the first time in over a week. Getting through surgery was just one small hurdle, but passing it felt like a major success, and I was at peace.

Good News!

Yesterday was emotionally draining and interminably long. But I’m happy to report that Daphne made it through surgery and is doing extremely well in the CICU (Cardiothoracic ICU). The swelling is going down. She's breathing on her own. She's eating better than expected, and she's often alert. Will, Shelby, and my mother-in-law, Judy, are in town for the weekend, and they will get to meet Daphne later tonight.

Will and I are filled with gratitude to our Heavenly Father for protecting Daphne and sustaining our family during this stressful time, and we thank everyone who has joined us in praying and fasting for Daphne. Thank you so much for your love and support!

The Arms of the Lord

Today was an emotional day for me. Even though I felt confident that Daphne’s surgery would go well tomorrow, I still struggled to subdue the heartache and stop the tears from flowing. When I picked up Daphne this morning, I felt different: anxious, protective, and completely helpless. I knew she needed her surgery, but the thought of being separated from her and watching her experience so much pain at such a young age broke my heart. For the first few hours of the day, I just sat in the rocking chair, crying and cradling my little one.

The Lord must have known today would be particularly difficult, because it seemed as if everywhere I turned there was someone to commiserate with, someone to ease my burden, someone to pray for me, or someone to open her arms and offer a much-appreciated hug.

First, there was V’s grandmother, who paused in my doorway to watch me rock my daughter while she imagined the day when her daughter-in-law would be able to hold her 1 lb. 9 oz. daughter. This woman spoke to me of miracles, telling me about her unexpected recovery from a brain tumor. Then she assured me that everything would be okay and promised to keep me in her prayers.

Next, I met the mother of a 9-lb. baby boy who was born at home. She expressed hope that she would be able to hold her son soon; then she asked me about Daphne’s condition. We spoke of our children and shared words of faith and encouragement.

A few hours later, I stopped by the Ronald McDonald House to let management know I would be sleeping at the hospital. As I spoke, my throat began to close, and tears filled my eyes. April, the assistant manager, asked me about Daphne (remembering her name from check in), offered words of encouragement, then asked if she could give me a hug.

On my way back to the hospital, I stopped to buy lunch. I must have looked awful, because the woman behind the counter asked me if everything was oaky. When I mentioned that my daughter would be having surgery tomorrow, she too offered me a hug, saying she has four children of her own and would pray for mine.

Earlier in the day, my mother contacted the mission home in Birmingham, Alabama, and requested that two missionaries visit me and give Daphne a blessing. The elders gave Daphne a beautiful blessing, saying that the surgery would go as planned and that the surgeon’s hands would be guided (among other things). This message filled me with peace and finally put a stop to the unpredictable flow of tears.

Later in the evening, as Daphne's day nurse Jan was preparing to leave, she reminded me to stop by any time if I needed support. Then she gave me another hug and left for the night.

Finally, as I entered the RNICU family room for a late dinner, I met up with another new mom, A, and her mother. These women shared their home-cooked dinner with me, and we swapped stories about our children. A’s son was born at 25 weeks and weighed just 1 lb. 7 oz. He has a heart condition similar to Daphne’s but won’t be operated on until he has grown a bit more. As these women left, A’s mother gave me a hug and promised to include me in her prayers.

Today I was filled with sorrow, but the Lord sent willing, open-hearted servants to wrap their arms around me and offer words of hope; through them, I could feel my Heavenly Father’s love and comfort. I was not alone today.

Reasons to Be Grateful

Throughout my life, I have been blessed with an unwavering testimony that Heavenly Father knows me personally. I have felt the power of His love and seen the blessings of His guidance. I have also seen Him work great miracles in my life, including helping me unite with my two sweet girls.

My experiences over the last week have reminded me, once again, that Heavenly Father is always mindful of His children, especially in their trials. Each day since arriving in Alabama, I have witnessed His tender mercies and found new reasons to bow my head in gratitude.

I am grateful that Daphne was born at UAB, where they have a team of doctors that specializes in neonatal cardiology. They have been very kind and patient in explaining her condition and answering my questions. They have treated me with respect and honored my role as her mother. I feel confident that Daphne is receiving excellent care under their direction.

I am grateful for the comforts afforded by the UAB RNICU. It has been wonderful to have a private room where I can sit and hold Daphne hour after hour, with no visiting restrictions. It has been a luxury to have Internet access and cell phone coverage in the room, because it has allowed me to stay connected to family and friends during this lonely time.

I am grateful for the kind and competent UAB nurses and support staff, who have gone above and beyond to ensure that both Daphne and I are comfortable. They have been both caregivers and friends, and each has touched my heart through unique acts of service. I am indebted to them all for making my time here in the hospital easier.

I have been the recipient of so many acts of service, large and small. I want to thank the following UAB staff members for their kind deeds:

• Sara for dressing Daphne in a bow and vest and taking her first photos
• Regina for putting to rest my fears about my arrival
• Heather for introducing me to Daphne without delay, for posting our first mother-daughter photo in Daphne’s room, and for popping in just to say hi
• Suzanne for checking on me on her day off, for finding me answers to miscellaneous non-medical questions, for reserving me a room at the Ronald McDonald House, and for stopping by to chat every day
• Paula for loving my baby enough to consider taking her home and for checking up on me before I arrived
• Kendall for giving me permission to hold my daughter all night long, for not waking me during my 3-hour “nap,” for finding me a picture of Daphne’s heart defect, for giving me a list of Daphne’s birth statistics, for sharing her personal life with me, and for talking to me scrapbooker-to-scrapbooker
• Page for teaching me to read the vitals monitor, for directing me to a hospital shower, for reserving me a sleep room before I knew I needed one, for explaining a PICC line and calling me as soon as she finished inserting it, and for suggesting we might be able to transfer Daphne to SLC for surgery (even though it didn’t work out)
• Stephanie for putting on Daphne’s Mary Jane socks when I wasn’t there, for letting me listen to Daphne’s heart murmur, for giving me baby wash so I wouldn’t have to go to the store at 10 p.m., for turning on classical music during the night, and for asking me if I would be okay alone during surgery
• Judy for checking in so often, for trading out Daphne’s medication monitor just to be safe, for teaching me to read the medication monitor, for giving Daphne a sponge bath, and for caring about a minor spike in temperature
• Jan for getting those unruly cords under control, for teaching me that Daphne’s blood pH should be above 7.35, for letting me take Daphne’s temperature, for recommending two of her favorite books, for asking me if I felt lonely, and for giving me a hug goodbye
• Denise for knowing how to use a nice camera and for taking good pictures of Daphne and me
• Tatiana for giving Daphne a pep talk during her blood draw and for telling me stories about herself
• Miriam for offering me extra towels for the hospital shower and for wrapping Daphne's hand to prevent her PICC line from crimping

In addition to the facility and staff at UAB, I am grateful for the staff and volunteers at the local Ronald McDonald House, where I have been blessed to stay so that I can remain close to my daughter. I am also grateful for Brother Giles and Brother Norris, who—without knowing me—came to the hospital on Sunday to bless my little girl. In answer to an unspoken prayer, Brother Norris also provided me with a vehicle to use while I’m in town. It has been such an unexpected blessing, especially today, when I had to visit a local lawyer to sign some adoption-related paperwork.

These are just a few of the many blessings I have received in the last few days. If I have forgotten to name anyone by name, know that your efforts did not go unnoticed. Everyone I have met here in Alabama has left an impression on my heart and made my burden a bit easier to bear.

Her Heart & What Lies Ahead

Within a few hours after birth, Daphne was diagnosed with a congenital heart defect known as pulmonary atresia with hypoplastic right ventricle. This defect affects the right side of the heart, which is the side of the heart that receives deoxygenated blood from the body and sends it to the lungs to be oxygenated.

A normal heart has four chambers. The left atrium receives oxygenated blood from the lungs and sends it to the left ventricle, which pumps it to the rest of the body. The right atrium receives deoxygenated blood from the body and sends it to the right ventricle, which pumps it to the lungs to be oxygenated. As blood moves through the heart, it passes through valves that allow the blood to move forward but not backward at regular intervals. The pulmonary valve sits between the right ventricle and the pulmonary artery, which is the artery that leads from the heart to the lungs.

In a child with pulmonary atresia, the pulmonary valve is completely sealed, which prevents deoxygenated blood from returning to the lungs to be oxygenated. As a result of this defect, the right ventricle is unable to perform its natural function during fetal development and becomes hypoplastic, meaning severely underdeveloped. Because blood cannot get to the lungs, this type of heart defect is extremely critical and must be surgically treated soon after birth.

Between birth and surgery, a child with pulmonary atresia is given a drug called Prostaglandin to prevent the ductus arteriosus from closing. The ductus arteriosus is a vein between the aorta and the pulmonary artery that is present during fetal development but naturally disappears soon after birth. This vein provides a temporary solution for getting deoxygenated blood back to the lungs. For a permanent solution, the child must undergo a series of three surgeries to completely bypass the right side of the heart.

The first surgery, which is considered a closed-heart surgery, is performed soon after birth (Daphne’s surgery is scheduled for Thursday, February 3). During this procedure, the surgeon makes an incision in the child’s side and inserts a BT shunt between the aorta and the pulmonary artery. The BT shunt is a Gore-tex tube that basically performs the same function as the ductus arteriosus, allowing deoxygenated blood access to the lungs. After this surgery, the child no longer needs the ductus arteriosus, and it is allowed to close.

The second and third operations are part of a two-part open-heart surgery. The second surgery, called a Bidirectional Glenn, is performed between 3 months and 1 year, depending on the child’s development. During this procedure, the superior vena cava, which delivers deoxygenated blood from the upper part of the body to the right atrium, is detached from the right atrium and hooked to the right pulmonary artery, allowing this blood to reach the lungs more easily.

The third surgery, called a Fontan Completion, is usually performed between the ages of 3 and 6. During this procedure, the inferior vena cava, which delivers deoxygenated blood from the lower part of the body to the right atrium, is detached from the right atrium and a piece of tubing is used to link it to the right pulmonary artery. After this surgery, blood flow to the right side of the heart is completely cut off, and the child lives life with just half of a heart—which is really how she’s been living all along.
 
The prognosis for this series of surgeries is good. The first children to undergo these procedures are in their twenties and thirties and appear to be living full and happy lives. Although heart surgery is always risky, I feel confident that these surgeries will be able to bless Daphne and help her live long enough to fulfill her mission here on earth. These procedures really are a miracle, because without them she wouldn’t have that opportunity.

Meeting My New Daughter

On Thursday, January 27, the night before my flight to Birmingham, Alabama, Will gave me a priesthood blessing in which I was promised that I would be able to clearly understand the medical terminology that the doctors would use to explain Daphne’s condition. I was also promised that this understanding would help me to make the right decisions about her medical treatment. This was a very comforting promise, especially since all I knew at that moment was the name of Daphne’s diagnosis: pulmonary atresia.

When my dad learned about Daphne’s heart defect, he contacted Dr. Edward Clark (chairman of the department of pediatrics at the University of Utah and medical director at Primary Children’s Medical Center), who he knew through his work with the American Heart Association, to find out if he had any advice for me regarding Daphne’s condition. Several years ago, Dr. Clark co-authored a book called The Heart of a Child, written specifically for parents of children with heart defects. The book reviews the normal anatomy of the heart, provides an overview of different heart defects, and explains the history and application of various surgical procedures. Dr. Clark set aside a copy for me, and my mom picked it up and delivered it to me before I left for the airport.

I devoted my travel time on Friday to studying this book, focusing on the sections relating to Daphne’s diagnosis of pulmonary atresia. As I studied the illustrations of the heart and read the pertinent explanations, I found it surprisingly easy to understand Daphne’s condition and come up with specific questions for the doctors in Alabama. Right away, I began to see the fulfillment of the promises I had been given in my blessing.

I boarded my first flight from Salt Lake City to Phoenix at 12:10 p.m. on Friday, January 28. The flight was uneventful. I sat next to two nurses who reminded me how fortunate I am to live near Primary Children’s Medical Center, where they have the expert staff and resources to monitor and treat Daphne’s heart condition. That truly is an incredible blessing.

My layover in Phoenix was supposed to be 1½ hours, but at the last minute, my flight was delayed another 2 hours. I was extremely disappointed and worried. I began to panic, because I still hadn’t been able to reach my contact at the hospital, and I didn’t know what to expect upon arrival. Would the staff be expecting me? Would they accept me as the adoptive mother? Our adoption agency had assured me that the hospital was expecting me and that I would be able to sleep in Daphne’s room with her, but I was skeptical. I couldn’t imagine a NICU with such lenient visiting hours or such generous accommodations. To calm my fears, I decided to call the hospital again and simply ask for the nurse caring for “Baby Girl O” (at the hospital Daphne is registered under her birth mom’s last name).

The woman who answered my call was named Regina. She updated me on Daphne’s status, saying that she was a very good baby and had been eating well. She also confirmed that the NICU would be expecting me, no matter what time I arrived, and that I would be allowed to stay with Daphne during the night. Speaking to her was so comforting that I was overcome with gratitude and couldn’t speak without crying. I thanked her for taking such good care of my daughter and said goodbye.

One of my biggest concerns about traveling to Alabama without Will was that I wouldn’t have a priesthood holder with me to give Daphne a blessing. Before I left, my dear friend Janette contacted her grandmother, a former resident of Birmingham, to obtain the name of a priesthood holder who lived near the hospital. During my extended layover, I called this man, Reid Giles, explained Daphne’s heart condition, and asked if he would come give her a blessing sometime over the weekend. He kindly agreed to come and told me to call as soon as I knew when the hospital would allow him to visit. As I hung up, I felt extremely grateful that the priesthood power is the same no matter where you go and that someone would be able to bless my baby, even if her daddy couldn’t be there.

The flight from Phoenix to Birmingham seemed unbearably long, even though it lasted under 3 hours. During the flight, I frantically studied Dr. Clark’s book, hoping to find peace and comfort by obtaining more knowledge. When I stepped off the plane, I became increasingly anxious, filled with equal parts excitement and apprehension. I was so close to my daughter, but the next part of the journey would require me to be self-sufficient and confident, qualities I don’t naturally possess.

After collecting my luggage, I found a taxi and headed to the University of Alabama Birmingham Women & Infants Center (UAB). Following the instructions I had been given, I went to the third floor, pushed the intercom button, and explained that I was the mother of “Baby Girl O.” I had to walk past Daphne’s room to sign in at the reception desk. That was painfully difficult. How much longer would they keep me from her? How much paperwork would I have to complete?

When I reached the reception desk, a young woman named Heather welcomed me with a bright smile, picked up a few papers, and said, “You can fill these out later. Would you like to go see your daughter now?” No delay; no paperwork. I could see her that very minute!

The first moment I saw Daphne, she was sleeping peacefully in a clear, enclosed incubator. I stood on the right side of her bed with my hands clasped in front of me, anxious to touch her but stopped by transparent walls. “She’s so beautiful and so tiny!” I exclaimed. Daphne’s nurse Kendall had joined us, and she and Heather both chuckled. Many of the other babies in the NICU were under 3 pounds, so at 4 lb. 12 oz. (Daphne’s weight on that night), Daphne seemed like a large baby to them. But she looked so small, lying naked on her white and blue hospital blanket.

As I began to cry with tears of joy and gratitude, Kendall asked if I wanted to hold Daphne. I was elated! From the looks of her incubator, I had assumed that wouldn’t be possible. But apparently, the lid was lowered only to keep in the warmth. Daphne was perfectly stable, and I would be allowed to hold her all night if I wanted to—which I did (except for 3 hours when I slept on the couch just a few feet away). Kendall and Heather snapped photos of me holding Daphne and even printed a few to hang in her room. They brought me a pillow and blankets, in case I wanted to sleep, and then they left me to enjoy my baby girl. I snuggled her from 10:30 p.m. to 2:00 a.m., when I finally became so exhausted I didn’t trust myself not to drop her. I woke at 5:00 a.m. and picked her right back up. I couldn’t get enough of her, and I didn’t want to let her go.

photo My first photo with Daphne Jane Gainer, taken just minutes after my arrival at UAB.