Work in Progress

Support the Heart Walk, Remember Daphne

2011-08-26T09:26:00.004-06:00

Dear family and friends,

This year, Will and I will be participating in the American Heart Association's Heart Walk in loving memory of our daughter Daphne Jane Gainer, who was born with a congenital heart defect and passed away shortly after her second heart surgery. We'd like to invite you and your families to join our Heart Walk team and walk in honor of Daphne. The Heart Walk is a 5K run/walk on September 17, 2011, at Sugar House Park. (Events kick off at 7:30 a.m. The walk starts at 9:15 a.m.) There is no fee to participate in the walk, but we encourage every family to raise $25 dollars to donate to the American Heart Association in Daphne's name.

To join our Heart Walk team, follow these simple steps:

1. Go to http://heartwalkutah.kintera.org/rachelgainer.
2. Click My Team Page.
3. Click Join Our Team, and follow the prompts to register.
4. Once you've joined our team, I encourage you to set up a personal webpage to share your "heart" story and help you collect donations of your own.

During the registration process, you will have an opportunity to make a donation. Even if you can't join us on September 17, you can still make a donation on my Heart Walk webpage: http://heartwalkutah.kintera.org/rachelgainer. The American Heart Association's fundraising website has a minimum donation amount of $25. If you prefer to make a smaller donation, you can do so by bringing a check to the Heart Walk or mailing a check directly to me. I will make sure all donations are added to the team goal.

Even if your family can't make a donation at this time, we'd love to have you join our team and show your love for Daphne. We'll be printing team t-shirts, and we'd love to have a big group join our memorial celebration. Please invite your friends and family to walk in Daphne's honor and help us reach our team fundraising goal. You can share Daphne's story by directing people to her blog: http://daphnejanegainer.blogspot.com/2011_01_01_archive.htmlaphnejanegainer.com.

Thank you for your love and support over the last eight months. We love you all!

Sincerely,
Rachel & Will Gainer

Meet Phoebe Quinn Gainer

2011-05-02T14:06:00.000-06:00

We’ve welcomed a new addition to our home: Phoebe Quinn Gainer was born on Friday, April 22, 2011, in Mississippi. She arrived at 37 weeks, weighed 6 lbs. 6 oz., and was 19 inches long. She and her birth mom traveled to Utah late Friday night, and we met with our adoption agency very early Saturday morning to sign paperwork and bring Phoebe home.

Our decision to adopt Phoebe so soon after losing Daphne will undoubtedly surprise many of you. It surprised us, too, but it was absolutely the right decision for our little family.

After Daphne passed away, Will and I intended to wait a while before adopting again. But, when a friend at our adoption agency asked us about our family plans a few weeks ago, we realized that, although we weren’t anxious to adopt, our hearts didn’t feel as closed to the idea as we expected. We told our friend she could bring us individual situations and we’d consider them one by one.

On Friday, April 22, at 3:40 p.m., our agency called Will about a little girl who had been born in Mississippi a few minutes earlier. She was a few weeks early but apparently healthy, and her birth mom wanted to travel to Utah to place her, so we wouldn’t have to fly to Mississippi or wait for ICPC to clear.

When Will got home from work, I was rushing around, frantically trying to prepare our house for Shelby’s birthday celebrations—a family party that night and a princess tea party the next afternoon. (Yep, Shelby’s birthday is also on April 22.) Will interrupted my preparations to tell me about the agency’s call. I could tell from his tone of voice that he felt good about this little girl. I felt too stressed and emotional to make a quick decision.

Part of me wanted to say yes, but part of me felt that, by saying yes, I would be betraying Daphne. It was so soon, and there were so many things I still hadn’t done for her. Before I could say yes, I needed to be sure I could be fair to both girls—that I could still honor Daphne while loving a new little one unconditionally, that I could keep them separate in my heart and treat them as individuals.

I called our friend at the agency for advice. She told me that only Will and I could know if this particular baby was right for our family. Then she assured me that my fears of betraying Daphne were normal, and she pointed out that it wouldn’t matter when we decided to expand our family, those feelings would always be there. She was absolutely right. One month, six months, two years—it would never be long enough for me to stop missing Daphne. I will miss her until our glorious reunion.

When I got off the phone, I had less than an hour before Shelby’s party. As I tidied the house, I pondered our decision. I tried to imagine saying no, but each time I tried, I felt a wall form in my mind, as if this wasn’t even an option. This Mississippi baby was meant for our family, even if I felt unprepared.

Will and I decided to take until morning to make our final decision. I woke early Saturday morning to finish preparations for Shelby’s princess tea party. When Will joined me later, we discussed our decision and decided to tell the agency we would take the little girl in Mississippi.

I felt comfortable with our decision but extremely agitated because we didn’t have a name for our baby. We tested names on our list, but none of them felt right. I started looking up names online, searching for ones that sounded good with Shelby and Daphne. Eventually, I stumbled on Phoebe, and Will agreed it was perfect. We opted not to tell anyone except our parents about Phoebe, because we knew the match could fall through, and we didn’t want others to suffer that lose.

When Will initially talked to our agency, they said that Phoebe would arrive in Utah on Easter Sunday. But Sunday passed, and Phoebe wasn’t discharged. Monday passed and then Tuesday. Each day we prepared for Phoebe’s arrival, but each day ended in disappointment. On Tuesday night, our agency pressed our birth mom for better information and learned, through a conference call with Phoebe’s nurse, that Phoebe was in the NICU and wouldn’t be released for several days.

During delivery, our birth mom’s oxygen level had dropped and so had Phoebe’s. Phoebe was sent to the NICU for observation. Because she was a bit early, she had trouble eating and breathing at the same time. At first, she held her breath while eating, then panicked and spit up to breath. The NICU team wanted her to go seven days without a feeding episode. We were obviously concerned to learn that Phoebe was in the NICU, but we were relieved to understand why she wasn’t being discharged.

On Friday morning, we learned that Phoebe had been discharged and would be arriving in Utah at 11:00 p.m. We arranged for Shelby to have a sleepover with Will’s mom, Judy, and we stayed up, anxiously waiting to hear from our agency. Around 11:40 p.m., we received the call that Phoebe was in Utah. Because of the late hour, our agency opted to have us sign paperwork at a Village Inn near our birth mom’s hotel; then they took us to meet our birth mom. She was very sweet and friendly. I always love meeting the birth mom. It gives me context for my child’s biology and something to tell her if she has questions in the future.

When we walked in, our birth mom was sitting on the edge of the bed, holding Phoebe. We spotted Phoebe’s thick, curly hair from across the room. (Shelby and Daphne both had lots of hair, but Phoebe made them both look bald.) Moving closer, we noticed Phoebe’s impressively long fingers. As we were commenting on this, she stretched, extending the longest, skinniest baby arms I’ve ever seen. We’d been told she was 19 inches at birth, but she appeared much longer in real life. Phoebe didn’t look anything like I expected, but she was absolutely adorable.

Since Phoebe had been dressed in Mississippi, she was a little underdressed for Utah’s chilly weather. We put her in a warmer outfit, buckled her in her car seat, and wrapped her in blankets. We hugged our birth mom goodbye and headed to the car. We arrived home at about 2:00 a.m. By 2:30 a.m., we had fed Phoebe and tucked her in for the night. We expected to be up a few hours later, but Phoebe was so exhausted from the trip that she slept until Will woke her five hours later.

Phoebe is a very calm, quiet baby, who sleeps day and night. When she’s awake, she likes to watch faces. At first, she seemed to be scowling all the time, but her expressions have grown more pleasant and content over the last two days. She has powerful lungs but doesn’t use them very often. When she does cry, it sounds more like an eagle screeching. It’s adorable.

Shelby absolutely loves Phoebe and has been a wonderful helper. She wishes we had named her Cinderella. Each morning, she helps me bathe, lotion, and dress Phoebe. When Phoebe fusses, she’s the first to respond with a pacifier in hand. She’s been asking for a sibling since Daphne’s passing, and I think she’s happy to have a new little buddy at home.

Will is smitten with Phoebe. He loved our other girls as infants, but his bond with Phoebe seemed particularly strong from the first moment.

We love our new addition and feel very blessed to have her in our home. It is clear to us that Heavenly Father is still looking after our little family.

Daphne's Story: The Power of the Comforter

2011-04-29T02:35:00.001-06:00

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.

Daphne's Story: A Brief, Beautiful Life

2011-03-19T10:38:00.002-06:00

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 Story: Should I Panic?

2011-03-11T14:50:00.001-07:00

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!

Daphne's Story: Miracles Have Not Ceased

2011-03-08T15:03:00.003-07:00

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.

Daphne's Story: First Heart Catheterization

2011-03-02T18:27:00.006-07:00

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!

Daphne's Story: Marked with Love

2011-02-28T10:00:00.001-07:00

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?

Daphne's Story: Notes from Little Friends

2011-02-27T21:39:00.002-07:00

Shelby's friends Julia and Hannah have been begging their mom, Janette, to let them meet Daphne. Since they haven't been able to visit her at the hospital, they sent notes with their mom when she stopped by tonight. The notes made Daphne so happy that she opened her eyes to look at them.

photo This drawing by Julia is of the Cat in the Hat.

photo Hannah is in kindergarten and is just learning to write. The inside of her note says: "Dear Rachl I seen pichtres of your baby I wish to see it right now."

Thanks, girls!

Daphne's Story: Back in the Hospital

2011-02-26T16:46:00.007-07:00

Because Daphne spent the first month of her life at sea level, we knew she would need time to acclimate to Utah’s higher altitude and thinner air. We expected her to struggle a little during the transition and need a bit more supplemental oxygen than a heart baby born in Utah would need, but we believed her body would adjust and she would do just fine.

When Daphne was put on oxygen in Alabama, her medical team instructed me to maintain her oxygen saturations (sats) above 75 percent using as little supplemental oxygen as possible. At UAB, she needed just 0.3 LPM (liters per minute) of supplemental oxygen to stay in range, but as our altitude increased, so did Daphne’s oxygen requirement. During the flight (about 8,000 feet), she needed between 0.5 and 1 LPM, with an occasional boost of 1.5 LPM, to stay above 75 percent; when we arrived in Salt Lake City (just over 4,000 feet), she was on 1 LPM, a high but not excessive flow rate.

At first, Daphne seemed to do quite well on 1 LPM, easily maintaining sats in the high 70s and low 80s. Her levels dropped when she became upset (crying instead of breathing), but she usually recovered on her own in just a few minutes. When she didn’t, I bumped up her flow rate temporarily until she exceeded the 75–85 percent range. After a couple of days, I noticed that her base level had increased and she was no longer capable of maintaining on 1 LPM.

By Tuesday evening, Daphne’s base level had increased to 2 LPM, the highest setting on her oxygen concentrator. The flow was so strong it sounded like a strong wind rushing up her nose. Around 10:30 p.m., I put Daphne down for the night in her own room and went to my room to get ready for bed. As I was settling in, Daphne started crying, dropping her sats and setting off her pulse oximeter. That was the beginning of a very long, sleepless night.

Daphne’s oxygen levels usually improve when she’s being held and comforted, but on this night, nothing I tried improved her sats. She didn’t show any signs of respiratory distress (blue lips, heavy breathing, chest retractions), but she was irritable, fussy, and clearly uncomfortable. I couldn’t increase her oxygen flow, so I just had to wait for her to come up on her own. I tried holding her, leaving her in her crib, shifting her position, feeding her, burping her, restarting her equipment, turning down her oxygen, removing the humidifier—anything I could think of. But for 2 hours, her sats hovered between 68 and 72 percent.

When she finally rebounded into the high 70s, I tried to go back to bed, but within minutes, she dropped her sats again. I took my pillow into her room so that I would be closer to her and Will would be able to get better sleep. I tried to fall asleep in the rocker-recliner, but every time I closed my eyes, Daphne’s monitor alarmed. Daphne just couldn’t maintain her oxygen levels.

At 3:30 a.m., I decided to try putting Daphne in her swing, because sometimes she sats better sitting up. Getting Daphne, her pulse oximeter, and her cords downstairs in the dark was challenging, and I ended up waking Will and Shelby. Instead of going back to bed, Shelby insisted on coming downstairs to help me take care of Daphne. I put Daphne in her swing, put in a movie for Shelby, and fell asleep on the couch with Shelby in my arms. After the movie, Shelby helped me feed Daphne.

By 6:00 a.m., Shelby and I were both exhausted, but Daphne wouldn’t fall asleep in her swing. I lay down on the couch with Daphne cradled in my arms (carefully positioned to avoid smothering) and Shelby draped over my hip, and we napped like that until Daphne’s next feeding.

After such a frightening night, I knew I needed to follow up with a cardiologist, but Daphne hadn’t been to an appointment in Utah yet. I contacted the cardiology department at Primary Children’s Medical Center and explained Daphne’s situation to a nurse, who consulted with Daphne’s primary cardiologist and then told us to come in for an appointment with the on-call doctor.

That appointment did not go well. Will and I went together. The on-call doctor (who I won’t mention by name) seemed nice enough at first—he did a good job reviewing Daphne’s condition and listening to her medical history—but throughout our conversation, he made it abundantly clear that he didn’t expect Daphne or our family to handle our situation very well.

He explained that children with Daphne’s condition tend to decline after their third surgery, the Fontan Completion, and that they typically need a heart transplant after that. Up to that point, no one had told us that Daphne would most likely need a heart transplant, so that was shocking news. But what made it worse was that the on-call doctor continued by saying that the heart transplant would most likely fail, and he followed that by saying that he’d seen some couples handle this well but that many couples don’t stay together. So within a few minutes, he basically told us that our daughter would die no matter what we did and that we would most likely get divorced. We listened without responding, but we were furious.

I felt like the on-call doctor was saying, “You have no idea what you’ve gotten yourselves into. You made the wrong choice.” This is halfway right. We didn’t know much about Daphne’s condition when we decided to adopt her. But we did think about how it would change our world and Shelby’s world, and we did mourn, knowing that we might outlive our daughter. We made our choice because we knew it was what God wanted for us and for Daphne. We couldn’t have made a different choice.

I’m sure the on-call doctor thought he was preparing us for the worst, but it wasn’t the right time, and since he wasn’t Daphne’s primary cardiologist, he wasn’t the right person. He tried to rob us of hope. But without hope, there would be no reason to keep pressing forward—no reason to visit him. Daphne deserves to have parents who will fight for her and who will make every day count. Every day we buy her is a day for treatments and procedures to improve. We have every reason to hope.

The on-call doctor ordered an echocardiogram, which showed good blood flow to the right lung but inconclusive flow to the left lung. Based on Daphne’s decreased sats and the results of the echo, the on-call doctor decided to admit Daphne to Primary Children’s Medical Center on Wednesday, February 23, for further observation.

Since being admitted, Daphne has continued to have ups and downs. On Thursday afternoon, she was doing extremely well, sating in the 80s on 1 LPM. But during her evening examination, she got worked up, and her sats dropped drastically. The nurse increased her oxygen flow little by little, until she was receiving 3 LPM. Throughout the night, my mellow baby became increasingly irritable, squirmy, and fussy. She didn’t appear to be in respiratory distress, but she was clearly uncomfortable and seemed to have an upset stomach. I was up all night, trying to comfort her. Eventually, the nurse requested a suppository to help Daphne with constipation. Once she received it, she began to relax, and we were both able to get a little sleep.

Since Friday morning, Daphne’s sats have continued to fluctuate up and down, but overall they seem to be trending upward. She seems to be experiencing fewer and less dramatic d-sats and recovering more quickly on her own. I met Daphne’s primary cardiologist, Dr. Kim Molina, for the first time today and really liked her. She was friendly, attentive, and honest, and Daphne stayed calm during her examination.

Dr. Molina explained that, before Daphne can be discharged, she needs to demonstrate steady weight gain (so far, so good) and hold her sats above 70 percent at 1 LPM for 24 hours. This second requirement is a pretty ambitious goal for our little girl, and it may take some time to achieve. But truthfully, Daphne won’t be safe at home until she reaches these levels, so we’ll just have to keep praying for swift, steady improvement.

Daphne's Story: How to Be a Great Big Sister

2011-02-25T01:20:00.003-07:00

Being together in Utah after three weeks was such an incredible relief. I expected the transition into a family of four to be awkward and challenging, because Will and Shelby had developed their own routines in my absence and Shelby had avoided my phone calls while I was away. But being a family felt natural.

Over the weekend, Shelby wanted to be treated like a baby, but she also wanted to help take care of Daphne. By Monday, Shelby seemed fully adjusted to having Daphne and me at home, and she began taking her job as big sister very seriously.

photos Shelby set up this circle of stuffed animals to keep Daphne happy.

Before Daphne and I returned, Shelby explained her expectations to Will: “When Daphne comes home, I’ll be the mommy, and you’ll be the big sister and get Daphne diapers and hand me wipes.”

Now that we’re all together, Shelby loves helping me take care of Daphne. She really enjoys helping me bathe, lotion, and dress Daphne. One day, we put Daphne in a white headband with a pink flower, so Shelby searched for a matching hair bow for herself. She insisted on wearing the flower on the same side as Daphne’s, so I spent all day moving it from one side to the other, depending on whether Shelby was standing behind Daphne or looking at her.

Shelby insists on holding Daphne’s bottle during feedings and pushes my hand away if I try to help. When Daphne fusses, she offers her a pacifier and, in a soothing voice, whispers, “I know, baby, I know”—the very words I use to comfort and sooth Shelby when she is upset or hurt.

Shelby often asks to hold Daphne by herself, which means I prop up her elbows with pillows, place Daphne in her arms, and wrap my arms around both girls. In the evenings, when Will and I are trying to snuggle Shelby to sleep on the couch, we ask her to pick which parent she wants to hold her and which one she wants to hold Daphne. Inevitably, she asks for one parent to hold both girls at the same time.

Even though Shelby doesn’t really understand Daphne’s medical condition, she is still very interested in it. Daphne was discharged from the hospital with her sutures still intact, so when Shelby spotted them during bath time, she asked me when the doctors would “take out the blue strings.” When the pediatrician took them out on Tuesday, Shelby insisted on watching.

I’ve been extremely impressed by the way Shelby has jumped into her role as big sister. I knew she would be fascinated by Daphne, but I underestimated how gentle and attentive she would be. I worried that she would have a hard time sharing my attention, but since I have been away for three weeks, she doesn’t seem to realize that she’s sharing the spotlight. I’m so proud of her for being such a great big sister.

Daphne's Story: Sweet Home AL to Home Sweet Home

2011-02-25T01:16:00.005-07:00

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.

Daphne's Story: Phase One Complete

2011-02-17T12:58:00.001-07:00

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.

Daphne's Story: An End in Sight

2011-02-15T15:12:00.000-07:00

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!

Daphne's Story: Love Is in the Air

2011-02-14T18:57:00.003-07:00

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.

Daphne's Story: Our Bright-Eyed Beauty

2011-02-13T15:25:00.000-07:00

Daphne's beautiful, black curls attract a lot of attention, and so do her big, bright eyes. Up until today, she’s had her days and nights mixed up, spending her days snuggling in my arms and her nights staring into the darkness. She must have adjusted her internal clock, because she’s been alert all morning, giving me a chance to snap these cute photos.

For the first week and a half of her life, Daphne’s cheeks and eyelids were so puffy that she couldn’t open her eyes all the way. When the swelling finally disappeared and she fully opened her eyes for the first time, Will said, “She looks terrified!” And that’s the best way to describe how she looks whenever she’s awake—completely shocked by her surroundings. I love those amazing eyes!

My mom arrived yesterday, and both Daphne and I have been thrilled to have company. Grandma has had a cold, so she’s been wearing a mask around Daphne. I wonder if that explains why Daphne hasn’t been able to sleep today: maybe she wants to make sure no one’s going to wheel her into another OR.

Daphne's Story: Is No News Good News?

2011-02-13T14:36:00.000-07:00

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.

Daphne's Story: Discharge Postponed

2011-02-10T21:42:00.003-07:00

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.

Daphne's Story: Just How Small Is She?

2011-02-10T08:57:00.001-07:00

At birth, Daphne weighed 4 lb. 9 oz. and was 17 inches long. After surgery and Lasix, she dropped to 4 lb. 7 oz. Today, she weighs 4 lb. 12 oz. (way to go, Daphne!). So just how small is she? Here are some photos that put her size in perspective.

Daphne's Story: The Road to Recovery

2011-02-09T12:43:00.002-07:00

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.

Daphne's Story: Family Reunion in AL

2011-02-08T13:13:00.002-07:00

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.

Daphne's Story: The Agony of Waiting

2011-02-07T17:08:00.001-07:00

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.

Daphne's Story: Good News!

2011-02-04T18:16:00.000-07:00

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!

Daphne's Story: Photos of Our Darling Girl, Part 2

2011-02-03T09:58:00.000-07:00

Today is the big day. Daphne will be going into surgery at 1:00 p.m. AL time (noon UT time). Thank you for all of your prayers!

Daphne's Story: The Arms of the Lord

2011-02-03T00:49:00.000-07:00

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.

Daphne's Story: Reasons to Be Grateful

2011-02-02T21:11:00.000-07:00

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.

Daphne's Story: Video Introduction & Tour

2011-02-02T09:56:00.001-07:00

Daphne's Story: Her Heart & What Lies Ahead

2011-02-01T15:52:00.001-07:00

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.

Daphne's Story: Photos of Our Darling Girl

2011-02-01T11:12:00.000-07:00

Daphne Jane Gainer was born on January 20, 2011. She weighed 4 lb. 9 oz. and was 17 in. long. Now, at 13 days old, she weighs 5 lb. 1 oz. She has beautiful, soft, curly hair and dark chocolate eyes. When I first arrived, she looked pale and a bit swollen, but her soft skin is beginning to show some color, and the swelling around her eyes has started to go down (her feet are still pretty puffy).

Daphne is a calm, quiet baby who cries only when she is hungry or angry about being poked and prodded by the nurses (who are really very gentle with her). She is a greedy and speedy eater, which is rare and very encouraging in a heart baby. She loves her pacifier but will settle for her thumb if no one is there to put it in her mouth. She is happy to be held all day long but will also rest peacefully on her own. The nurses frequently comment that she is a very easy baby.

I spend all day in Daphne’s room in the NICU. I get to feed her, change her, lotion her, and hold her as much as I want. I usually hold her for 2–3 hours at a time and then give her a break in her bed. It’s hard to put her down, but I always stay nearby.

Daphne is doing great for a baby with her type of heart defect (more on her condition to come). We have been very blessed. Here’s a little glimpse of our baby girl.

Daphne's Story: Meeting My New Daughter

2011-02-01T10:03:00.000-07:00

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.

Daphne's Story: Finding the Right Baby

2011-01-30T18:54:00.000-07:00

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.

Mom & Me

2009-05-13T13:35:00.001-06:00

For Mother's Day, I helped my dad round up photos of my mom with her children for a digital slideshow. Finding the photos wasn't easy. My mom's photos are very carefully organized, but like most moms, she's not in many of the pictures. My dad and I had to search through 10+ albums and twice that many photo boxes before we found enough pictures to make a video. In the end, we rounded up 85 fabulous photos spanning 26 years. Here are some of my favorites of me with my mom. Happy Mother's Day, Mom! (Don't worry, I'll put all the photos back where they came from.)

A Simple Celebration!

2009-04-30T10:09:00.000-06:00

I joined the Simple Scrapbooks team in July 2006, just two days before my 23rd birthday. (Awesome present, don’t you think?) When I told my dad about the job, he said, “That’s great! How’s the pay?” “I don’t know,” I said, “They haven’t told me.” “Well,” he said, laughing, “you know you’ve found your dream job when you accept an offer without knowing how much you’ll be paid.” He was right: working at Simple was my dream job.

The People
Since many Simple teammates lived out of sate, getting together for team meetings usually involved a confusing conference call or blurry video chat (of course, we made do). But during my second week at Simple, I had the rare privilege of meeting the entire team face-to-face at the annual planning meeting. We’re talking about a week-long schedule of reviewing, revamping, and refining the mission of the magazine and brainstorming a plan to get the job done. I got to see Stacy Julian in action, explaining her liberating scrapbooking philosophy and sharing her hopes for the future, and I watched the entire team rally around her, sharing her enthusiasm and her vision. That was when I caught the vision of what it means to be a Simple scrapbooker, and I’ve never looked back.

The Philosophy
Before joining the Simple team, I believed (as so many do) that I needed to scrapbook events chronologically and stay caught up. But this approach wasn’t working for me. I wasn’t overwhelmed by photos (not yet and, thanks to Simple, not ever), but I also wasn’t inspired by what I had to work with. I had too many photos of events I didn’t want to scrapbook and a few random snapshots that didn’t match events. I had plenty of memories in my head, but I didn’t have photos to match. I was discouraged, and I wasn’t scrapbooking.

Simple taught me that scrapbooking should work for me, not the other way around. Soon I discovered that I could pair any photo with any story and that I could scrapbook whatever was important to me. The longer I worked at Simple, the more I understood. I started paying more attention to my everyday life, journaling in the moment (or soon after), and carrying my camera everywhere I went.

Now that I have a little girl and plenty of inspiring stories to tell, I have less time to actually create pages. But I’m still a Simple scrapbooker. I notice when my daughter enters new phases. I snap photos on ordinary days. I write down funny things she does. I look for patterns in my photos. I ask people to take pictures of us together. Sometimes I run for the camera. Sometimes I enjoy the moment. I collect inspiration. I buy fun new products. I reorganize my scrap space. And when I find the time, I make layouts I love. I don’t agonize over photos I haven’t printed or pages I haven’t made. I am a Simple scrapbooker, through and through.

These are two of my favorite pages that were published in Simple Scrapbooks magazine. The first is an "event" page; the second is an "everyday" page. I love having that kind of freedom!

Happy Birthday, Shelby!

2009-04-27T13:02:00.000-06:00

It’s official: my little girl is one year old.

I’m usually a huge fan of birthdays, but I dreaded this one for weeks. It only reminded me that my baby was growing up too fast and that it wouldn't be long before she was heading off to college. And I couldn't bear the thought of saying goodbye. I know that sounds melodramatic (especially since I've still got the terrible twos and the teen years ahead of me), but I can't be the only mother who has ever felt that way.

Since I couldn’t avoid the inevitable, I planned a big birthday bash to distract myself. I invited twenty-five guests (mostly family) to join us for a BBQ, gifts, and cake. Dinner and dessert were a hit with Shelby, but gifts were a disaster (she wouldn't open a single one). Here are a few pictures of the festivities:

I borrowed the color palette (yellow, pink, turquoise, and green) and butterfly theme for Shelby's party from my favorite piece of BasicGrey paper. Then I used my QuicKutz Revolution, a butterfly die, and Doodlebug papers to create simple butterfly decorations, which I taped around the room. Pretty and easy!

No high chair today! Shelby loved sitting at the table with all of the big people. Of course, she wasn't thrilled to be the only one at the table with a sippy cup. She wanted a regular cup and tried to steal any cup within reach.

It took me 4 hours to frost this cake, but I think it turned out pretty darn cute. The frosting even matched the decorations. (Will used the leftover frosting to decorate a second butterfly cake, just in case. It took him 4 minutes and looked great. Further proof that Shelby needs both of us.)

Shelby didn't want anything to do with her presents, so no cute pictures of that. But she was a big fan of her cake, polishing off two big pieces and ending by mashing crumbs into her hair. (And believe me, it's not easy to get frosting out of those curls!)

All in all, I'd say the party was a big success. Thanks to everyone who joined in the fun!

Time Flies

2009-04-23T20:00:00.000-06:00

One year ago today, I was walking through Pier 1 Imports, looking for props for Mini Albums in an Evening, a Simple Scrapbooks special issue. I was examining a narrow, turquoise shelf when my cell phone rang. My heart began to race. For weeks, I had been impatiently waiting for a call from my adoption agency, telling me that my husband, Will, and I had been matched to a birth mom. When I glanced at my phone and saw that it was Will, I relaxed but with a twinge of disappointment. That morning, Will had left for a business trip to Mississippi, and I assumed he was calling to check in. I was wrong.

Moments before, Will had received the call I had been anticipating. We had been matched with a birth mom who had delivered a healthy baby girl the night before. My heart was racing again. I began pacing the aisles, sitting down on random chairs, then jumping up and pacing some more. After all the waiting, I was a mom—just like that. I felt a cyclone of emotions welling up inside of me until, finally, I broke down and cried in the middle of Pier 1, surrounded by trendy décor and unfamiliar people.

Since Will was out of town, we agreed to keep the news secret (at least from our families) until he returned and we picked our little girl up from the hospital two days later. That was a painfully difficult task, and I probably would have had a nervous breakdown if not for my dear friends Janette and Angie, who helped me get ready to walk out of one life and into another in less than 48 hours. Bless them for putting up with my manic mood swings!

I spent the next two days at the hospital, holding my beautiful baby girl and getting to know her amazing birth mom—a woman I loved instantly and miss daily. People sometimes ask me when I felt like Shelby's mom. The answer is simple: before I met her. The moment I saw Shelby's birth mom, I knew she had carried my little girl, and I felt bonded to both of them. It was the most peaceful moment of my life. And then I met my little girl, and I felt as though I had never been without her. I loved everything about her: her adorably long feet, her soft black hair, her funny little grimaces. I couldn't get enough of her.

Shelby's first birthday has come and gone, and my beautiful baby is now a little lady. I love her and can't imagine life without her. She makes me laugh every day, and she makes me wish time would just slow down. At least most days. :)