58 Days

58 days. An entire lifetime for my little girl.

On Sunday, we passed day 58 again, and today is day 60.

I don’t count every day that Daphne is gone, but I have been anticipating this moment for a while: my daughter has been gone longer than she was here. And every 58 days, from now to eternity, I’ll live another lifetime without her.

Since Daphne’s passing, I’ve been trying to find ways to hold on to her, to keep her story alive:

·      I spent two weeks putting together a family photo collage for my living room, when I’ve never been one to put holes in my walls.

·      I’ve been working on packages of baby bows to send to UAB hospital, where Daphne spent half of her lifetime.

·      I’ve been slowly working on an idea for a foundation inspired by our experience with Daphne.

·      On the very day we adopted Phoebe, I attended a luncheon for heart moms, hosted by Intermountain Healing Hearts. I just wanted to feel part of that community, even though I won’t experience a fraction of what many of those amazing moms have as they’ve cared for their sweet heart babies year after year. I have plans to get more involved with this organization in the future.

·      On Mother’s Day, I shared Daphne’s story with a room full of young women and their moms. A friend at our adoption agency invited me to visit her ward and share some of my spiritual experiences related to Daphne’s adoption and heart condition. To some people, this seemed like a cruel thing to have to do on my first Mother’s Day without Daphne, but for me, it was a blessing to have an excuse to focus on her. I love talking about her and sharing her story.

I think about my angel every day. But I try not to wonder what we would be doing if she were here, because that was never God’s plan. Instead, I try to imagine what she is doing on the other side—what she looks like, who she is with, the missionary work she is doing. I think about what she would want me to be doing here. Sometimes this helps; sometimes it doesn’t.

One of my deepest sorrows is that we haven’t been able to complete Daphne’s sealing yet. The final adoption paperwork is lost in the court system, and it seems to be taking forever. I had really hoped to be sealed before day 58. Please pray that everything will go through soon. I’m anxious to have our family bound together for eternity.

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.

A Brief, Beautiful Life

Daphne Jane Gainer, my bright-eyed beauty, returned to her Heavenly Father at 11:00 p.m. last night after undergoing a 7.5-hour open-heart surgery. I miss her desperately, and my heart feels heavy with grief. But I believe she is safe in the arms of loved ones on the other side, and her heart is whole now. She filled her earthly mission, and now she is with our Savior. Pray for our family. Right now, we need courage.

Daphne's Funeral Services

Funeral services for Daphne Jane Gainer will be held on Tuesday, March 22, 2011, at 11:00 a.m. at the HH8 Ward chapel (2101 N Providence Dr., Saratoga Springs, UT 84045). A public viewing will be held before the service from 9:30 to 10:45 a.m. Following the service, Daphne will be interred at Larkin Sunset Gardens Cemetery (1950 E 10600 S, Sandy, UT 84092). All who wish to help us say goodbye to our sweet girl are welcome to attend.

Should I Panic?

I think every new mother asks this question a lot during her baby’s first weeks of life. I know I did with Shelby. I remember taking her temperature five times a day because she always seemed too warm, and I recall squeezing her gently during the night to make her squeak and breathe a little louder. But after a couple of weeks, I became familiar with her natural body temperature, behaviors, and sounds, and I didn’t worry quite as much.

With Daphne, my fears never seem to fade. I ask myself if I should panic at least a dozen times a day. If my typically mild baby fusses or grunts, I wonder if she’s struggling for oxygen. If she’s squirmy and restless, I wonder if her body is stressed or overworked. If she’s extra sleepy, I worry that she’s getting sick. If she’s a lazy eater, I worry that she won’t grow fast enough to move on to her second surgery. If she looks perfect, I worry that I’m missing something. I’ve done nothing but watch her and her monitors for 6 weeks, and I still don’t know when to worry and when to relax.

Now, in reality, Daphne and I have spent less than 2 weeks of her life at home, so maybe I’m still getting used to her rhythm. But since she’s still hooked up to a pulse oximeter (which measures her heart rate and oxygen levels), being home isn’t a whole lot different from being in the hospital (at least not in terms of monitoring her condition).

The biggest difference between the hospital and home is that now I’m the one responsible for deciding when to up Daphne’s oxygen. When she was discharged from Primary Children’s Medical Center (PCMC) last Thursday, she was completely off supplemental oxygen. But at her follow-up appointment on Monday, her oxygen levels were low, so Dr. Everitt (Daphne’s official cardiologist) instructed me to put her on the smallest amount of oxygen required to maintain her sats above 75 percent and asked me to call if Daphne needed over 3/4 LPM.

I started Daphne on just 1/32 LPM, but by Wednesday night, she was up to 1 LPM. By that time, it was after office hours, so Will and I spent 30 minutes debating whether we should contact the on-call doctor or wait until morning. Ultimately, I did what I always do: I called. I don’t like sounding like a hypochondriac, but I’d much rather be the mother who called when it wasn’t important than the mother who didn’t when it would have made a difference. I worried that calling would result in another trip to PCMC and another hospital stay. But after some debate, the on-call doctor told us just to observe Daphne overnight and call Dr. Everitt in the morning. By the time I got a hold of Dr. Everitt on Thursday, Daphne’s oxygen requirement was down to just 1/4 LPM.

No one can explain Daphne’s strange cycle of decline and recovery. We’re just grateful she always seems to rebound.

Will I ever stop overreacting to small changes in Daphne’s behavior or monitor results? I’m a natural worrier, so I doubt it. Even when everything is going great, I’m hyperaware of her heart condition. I’m sure this hyperawareness will diminish over time, but I bet I’ll think about her health and check her for signs of decline every day for the rest of her life. Here’s hoping that’s a very long time!

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!

Marked with Love

A friend pointed out to me that the birthmark on Daphne's arm is shaped like a heart. It looks upside down to anyone holding her, but she'll be able to view it right-side up. Can you see it?