He Is Risen . . . and She Will Rise Again!

It’s 11:00 p.m. on the eve of Easter. For me, the hour is significant. It represents the moment on March 18, 2011, when my beautiful Daphne left her earthly body and returned to her heavenly home.

As Easter morning approaches, my thoughts are turned to my Savior and His earthly ministry. I marvel at the miracles He performed and the faith of those He healed. I think of the woman with an issue of blood, who knew that if she could just touch Christ’s robe she could be made whole (Matthew 9:20-22). I think of Jarius, who knew that Christ had the power to raise his daughter from the dead (Matthew 9:18). These faithful disciples understood Christ’s divine role as the Savior of the world. They believed that He was the Son of God and that He had the power He claimed to have.

When we had Daphne with us, the Spirit confirmed to me many times that Christ had the power to heal her broken heart—to perform a miracle that would shock the modern world. I prayed and prayed for that miracle. I wanted to be as faithful as Christ’s disciples in the New Testament, worthy of His divine intervention. The night Daphne passed—when I knew I would not get the miracle I had been seeking—I felt the Spirit remind me again that Christ could mend a broken heart. This time, I knew the Spirit was talking about my broken heart. Daphne’s was already whole.

Over the last year, I’ve turned to my Savior again and again, calling upon the power of the Atonement to help me overcome feelings of sorrow, loneliness, and guilt. I’ve begged Him to hold me in my darkest moments, and I’ve asked Him to fill my heart with hope and charity. There have been many difficult days when my arms have ached for my daughter, when I’ve felt as if the longing would swallow me up. But every day has also been filled with gratitude, joy, and humility, as I’ve remembered Daphne’s incredible radiance and wisdom. What an honor to be called as the mother of such a strong, faithful spirit!

As I anticipate the glory of Easter morning, I ponder the gift of the Atonement, which provides a way for me to repent and be reconciled with God. Without this marvelous gift, I would never be worthy to return to God’s presence. Instead, I would be eternally separated from my bright-eyed angel, who has already received a place in God’s kingdom.

But repentance is not the only purpose or blessing of the Atonement. The Atonement is an enabling power. It can heal any wound, restoring that which seems beyond repair. It makes it possible to endure and overcome all things.

When Daphne passed away, I thought my heart would never feel whole again. But I underestimated the power of the Atonement. When I began my journey with grief, I asked the Savior to help me find my way. Little by little, as I’ve called upon the power of the Atonement, I’ve felt the broken pieces of my heart reform into something stronger and more durable.

In this new heart, there is a special place for Daphne. It is a warm, sensitive spot, where I hold all my memories of her. It is also where I carry my grief. Grief is not the enemy I imagined at first. It is a quiet reminder that I have a child waiting for me on the other side. It is an outlet for sorrow and an inlet for joy. When I envisioned a healed heart, I imagined I would have to give up missing my daughter. But I am only mortal, and even with my knowledge of the gospel, it is impossible not to feel her absence. My Savior understands this, and He has made room in my healed heart for the complex emotions of grief. My heart is starting to feel whole again, because my Savior has bound it up and made it strong enough to endure the separation.

This Easter, I will celebrate the Resurrection with increased gratitude. I will envision an empty tomb and rejoice, for He is risen! My Savior lives! And because He lives, I know that my sweet Daphne will also live again.

One day, she and I will be together again—our hearts made whole through the Atonement, our reunion made possible through the Resurrection. We will kneel before our Savior, hearts overflowing with gratitude and love. This is my testimony. In the name of Jesus Christ, amen.

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.

First Heart Catheterization

Every time Daphne’s oxygen levels have dropped, her doctors have weighed the benefits and risks of performing a heart catheterization (cath) to explore the problem. During a cath, a thin tube called a catheter is inserted at the femoral artery (located in the groin area) and threaded up to the heart, where it is used to inject a contrast dye that makes the vessels around the heart visible on an x-ray fluoroscopy image. While an echo can tell you only if there is blood flow, a cath can tell you the volume and pressure of the flow. Because a cath can be risky for a baby Daphne’s size, no one orders the procedure lightly. The biggest risk is permanent damage to the femoral artery, which can stunt growth or result in amputation.

When Daphne’s oxygen levels dipped in Alabama, her medical team considered doing a cath but, ultimately, decided that she was stable enough to fly and it would be better to get her home. When she was admitted to Primary Children’s Medical Center (PCMC), the doctors began mumbling that a cath might be in her future. Even though they didn’t commit to it right away, I knew they would probably decide to go that route. So when Dr. Williams arrived Monday morning to say that a cath had been scheduled for that afternoon, I wasn’t surprised. I was just grateful that we wouldn’t have to wait any longer for the medical team to make a decision.

During his visit, Dr. Williams explained that Daphne’s echo showed reliable evidence of blood flow through her right pulmonary artery to her right lung but inconclusive evidence of blood flow through her left pulmonary artery to her left lung. The medical team suspected narrowing caused by scar tissue or the disappearance of the ductus arteriosus. They would use the cath to determine the extent of the narrowing.

I wasn’t worried about how Daphne would do during the procedure, but when Will arrived around noon, I still became a bit emotional. To give us all courage, Will gave Daphne and me very special priesthood blessings. I won’t share many details, because the messages were so sacred. But I will say that Daphne’s blessing focused on her choice to come to earth, and mine focused on my faith. The Spirit was as strong as I have felt in my life. I was reminded once again that the Lord is mindful of us and we are in His hands.

Around 2:00 p.m., my mother-in-law and my father arrived to keep Will and I company during the procedure. Not long after that, we met with the anesthesiologist, Dr. Harnden, and the cath cardiologist, Dr. Day. Because the op team in Alabama had such a difficult time accessing Daphne’s veins to administer the anesthesia, I quizzed Dr. Harnden about how he would handle the sedation and whether he expected any delays. He was very patient and kindly assured me that inserting a new IV and putting her under wouldn’t be a problem. While explaining the procedure, Dr. Day suggested that Daphne might benefit from a blood transfusion, because it would increase the oxygen-carrying hemoglobin in her blood. This was the first time anyone had mentioned this one-time treatment option to us. He said that, if any of us wanted to donate, it would take a few days to process the blood.

At about 2:30 p.m., we followed Daphne’s crib down to the cath lab, where they gave us a pager that would sound when Daphne’s procedure was complete. When we returned to Daphne’s room, I felt very calm. Despite the risks, I knew that she would be okay. While we were waiting, I looked up information on blood types and transfusions. I was happy to realize that Daphne is AB+ and, therefore, a universal blood recipient.

We’d been told Daphne’s procedure would take about 2 hours. Based on her last surgical experience, I decided to multiply that by two before worrying. At about 4:45 p.m., the charge nurse arrived and hastily explained that Daphne’s sats had dropped during the procedure and the cath team had decided to send her to the CICU instead of returning her to the surgical floor as planned. She didn’t have answers to any of our questions, and her persistent smile seemed out of sync with her message.

With this news, my brain and body went on autopilot, locking up my emotions. Logic told me that we would be asked to vacate Daphne’s room right away, so I began organizing and repacking my things just to stay busy. I refused to answer any questions; I was stoic. My suppressed emotions felt like a solid mass running through my core.

A few minutes later, the pager went off. I felt like running to the cath lab but forced myself to walk, staying just a few paces ahead of everyone else. When we reached the lab, we were directed to an office to wait for the doctors. After about 15 minutes, Dr. Day and Dr. Williams arrived.

As Dr. Day began reviewing the cath images, Dr. Harnden and an assistant rolled Daphne’s crib right past the office. I couldn’t believe they would roll her past me without letting me see her. I freaked out. The solid mass of emotions exploded, propelling me out of my chair and down the hall. I rushed after them, sobbing and begging them to stop so that I could see my baby. Seeing that she was off the ventilator alleviated my fears; she looked a little puffy and yellow (pale for her) but, otherwise, really good. Will and I touched her little hands, and then they wheeled her away.

Back in the office, Dr. Day showed us images from the cath. He pointed out the BT shunt running between Daphne’s subclavian and pulmonary arteries, assuring us that it was clear and flowing well. When we asked about the left pulmonary artery, he identified the flow but indicated that it hadn’t been a focus of the cath. He quickly moved on to Daphne’s small subclavian artery. I wasn’t surprised to hear that the size of Daphne’s subclavian artery was concerning (Dr. Kirklin had reported it after her surgery, and I’d been asking every doctor who examined her if that could be the problem), but Dr. Day presented the information like it was unexpected. He went on to explain that flow through the subclavian artery beyond the BT shunt was almost nonexistent, meaning it was no longer feeding Daphne’s left arm. Instead, her body had compensated by developing a web of smaller vessels to the arm. This was new information.

Next, Dr. Day pointed out Daphne’s right ventricle–dependent coronary veins. In normal heart anatomy, the heart is fed by vessels coming off the coronary artery. In some people with single-ventricle anatomy (like Daphne), the heart is fed by some veins that originate from the damaged ventricle. These veins are unstable and can cause unpredictable, fatal fibrillations (similar to a heart attack). Since the only solution is a heart transplant, they make Daphne’s condition much higher risk. I was also aware of this abnormality before the cath, but again, Dr. Day didn’t seem to know it had been previously reported.

After Dr. Day’s presentation, Dr. Williams explained that Daphne’s BT shunt appeared to be an inadequate solution for supplying her body with oxygen. To remedy this, he recommended placing a new BT shunt in a different location, using a larger branch of the aorta. This time, the surgeon would go in through Daphne’s chest, making it possible to ligate the original BT shunt if necessary (too much flow to the lungs is as bad as not enough). This news was disappointing but not unexpected. Before the cath, we knew that something needed to be done, and surgery was really the only option.

Throughout the meeting, I became more and more upset. I sat on the edge of my chair, staring at the screen. As before, I felt the anger as a solid, tense mass inside my body. I wasn’t angry that the doctors had performed the cath (it had provided some new and valuable information) or about the outcome (it was relieving to have an action plan). I was angry at Dr. Kirklin for relying on that small subclavian artery. I was angry that the Utah doctors hadn’t really looked at what they had told me they were going to look at (partly because it meant they had been wrong, and partly because it meant they hadn’t explained all of their objectives). Mostly, I was angry that they had announced the size of Daphne’s subclavian artery and her right ventricle–dependent coronary veins as if they were new discoveries. I had known about these things. They should have known before they went in. They should have reviewed the files from UAB, and if they didn’t have them, they should have obtained them. And if they couldn’t obtain them, they should have listened when I tried to tell them what they would see.

Honestly, I didn’t have any problem with the procedure itself or the results, but I was enraged to feel that they went in without preparing. I wouldn’t have cared one bit if they had ordered the cath to confirm and explore. I just wanted to hear someone say, “We saw what we expected to see here and here, and this is what we learned.”

During the meeting, I held my tongue, because I knew my feelings might change in a few hours and I didn’t want to say anything I would regret. But after the meeting, I unleashed a fury of words to anyone who would listen. A few well-meaning people tried to help me see things from the doctors’ point of view, but I had to ask these people just to let me be angry. The rage stayed with me all evening, even after I was with my daughter.

The following morning, when I felt calmer, I discussed my frustrations with Dr. Williams. He was very understanding and patient with my complaints, and he went out of his way to obtain a file that hadn’t been transferred from UAB. Later, a friend helped me see that my anger was an active response, a way to keep fighting for my daughter. Sadness, despair, discouragement—these passive emotions would have left me feeling helpless.

Initially, in the CICU, they had a little bit of trouble detecting a pulse in Daphne’s leg, so they started a Heparin drip to thin the blood and improve circulation. With time, the leg’s color improved, the toes warmed, and the pulse returned to full strength, relieving lingering concerns about damage to the femoral artery. To improve Daphne’s oxygen levels, they gave her a blood transfusion, and over the next 24 hours, her supplemental oxygen requirement dropped from 3 LPM to 0.25 LPM—the lowest it had ever been.

On Tuesday morning, Daphne had to endure a sweat chloride test for Cystic Fibrosis. PCMC had received word from UAB that Daphne’s initial screening test had come back positive, so a follow-up test was required. For the test, the phlebotomist placed electrodes on her legs for 5 minutes to stimulate the sweat glands; then he placed gauze on her thighs and wrapped them in plastic, heat packs, and blankets to make her sweat for 30 minutes. I believed the test would come back negative, but I still worried that a positive result would disqualify Daphne from a transplant down the road. Later that evening, we received the results of the test: negative for Cystic Fibrosis.

Before the test results came back, Daphne was transferred back to the surgical floor to await her second operation. She was on just 0.25 LPM of supplemental oxygen, and she was sating in the mid 80s. On Tuesday night, I slept at home with Will and Shelby, and my dad stayed with Daphne. Sometime during the night, they took Daphne completely off of oxygen.

I returned to the hospital on Wednesday morning in good spirits. When Dr. Williams arrived to discuss a timeline for Daphne’s surgery, he was surprised to see her sating in the high 70s and low 80s on room air. When he saw this, he recommended we hold off on repeating her surgery, since it wouldn’t be able to improve these sats. He felt that, if she could maintain these levels, she would be able to go home without receiving a new BT shunt. Then we would aim to help her maintain her sats for about 6 weeks and do an early Glenn when Daphne is 3 months old. He confessed that he’d never seen a blood transfusion make such a dramatic difference, but we’re both hopeful that we’ll be able to avoid a second BT shunt surgery. Will and I know that Daphne’s incredible improvement is a blessing from our Heavenly Father in answer to the many prayers that have been offered on her behalf. Thank you for keeping her in your prayers!

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.

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.

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.

Finding the Right Baby

As many of you know, Will and I have been trying to adopt a second child for about a year. When we started the process, we felt strongly that we should request another girl, even though it would limit our opportunities, so that's what we did.

Last July, we were matched with a birth mom who was scheduled to deliver a girl in November, but that match ultimately fell through. I was emotionally attached to that unborn child, so the loss was very painful for me, leaving me bereft and worried about the infant's welfare. After that experience, I was tempted to give up the search for my second daughter, because I couldn't imagine surviving another crushing disappointment. But deep down, I knew giving up wasn't really an option. It wasn't what Heavenly Father wanted from me or for me. So Will and I pressed on, considering every case our adoption agency brought to our attention. During December and January, we turned down several opportunities to adopt because the situations didn't feel right, even though some of them sounded ideal.

On Monday, January 24, our adoption agency contacted Will about two situations. The first was a little girl who would be born in Virginia around February 1. The second was a little girl who had been born in Alabama a few days earlier. This second little girl had been diagnosed with a congenital heart defect that would require at least three surgeries to repair. Both Will and I felt drawn to this second little girl; we were concerned for her well-being, and we wanted her to have a family that could provide all of the extra attention she would need. We talked about whether or not we could make it work and about Shelby's physical and emotional needs. Eventually, we convinced ourselves that we were not the best family for this second little girl. She would need more than we had to offer. We decided it would be best for everyone if we took the little girl in Virginia, so that's what we told our adoption agency we would do.

Over the next two days, Will and I tried to act enthusiastic about the baby in Virginia but instead found ourselves feeling unsure and asking each other, "You're excited, right?" During that time, I frequently wondered if our adoption agency had found a family for the Alabama baby. I was worried about her health and worried that no one would accept her. I wanted her to be loved and secure. I began to wonder if we had made the wrong decision, but I didn't know how to broach the subject with Will. Unbeknownst to me, Will had also been contemplating our decision. On Wednesday morning, he sent me a cryptic text message: "Rachel. On all the adoption situations we have talked about over the last few weeks, which do you think most about?" I decided to take the risk and tell him about my feelings for the Alabama baby.

Once we discovered that we were on the same page, Will contacted our adoption agency to find out if the Alabama baby had found a home. We learned that another family had considered taking her but ultimately decided against it because their first child also had a heart defect and had not yet completed her series of surgeries. Learning that the Alabama baby was still available was both relieving and terrifying. Relieving, because we desperately wanted her and we knew that God wanted us to take her. Terrifying, because we had to acknowledge the severity of her condition (which we knew so little about) and face the possibility that she might not survive her surgeries or reach adulthood. We were afraid, but we were also confident that we were making the right decision.

After counseling together, we contacted our adoption agency to let them know we had changed our minds. We would take the little girl in Alabama with the special heart.

After we made the call, Will was overcome with emotion. He was filled with fatherly devotion and concern and also humbled by the will of the Lord. I was filled with the Spirit of peace, a feeling I hadn't experienced since our first match fell through, and for the first time in months, I felt pure joy and relief.

I spent the next day (Thursday) getting all of my ducks in a row and delegating tasks to others so that I could leave for Alabama on Friday. Then, on Thursday evening, Will and I met with our adoption agency to sign paperwork. With just a few signatures, we became the legal parents of Daphne Jane Gainer.

photo Our first glimpse of Daphne Jane Gainer. This photo was taken by nurses in the UAB RNICU. When I saw the bow and Elmo vest, I knew our baby girl was in good hands, and I was filled with gratitude.

The most miraculous part of adoption is how the right babies find the right families. I'm so grateful that the Lord didn't give up on Will or me after we chose the wrong child. Working on us individually, the Spirit was able to change our hearts and turn us down the right path. Now we can face the challenges ahead with faith and confidence, knowing that the Lord is on our side and that He has a plan for our family and our little bundle of joy.