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.
Thursday, February 10, 2011
Wednesday, February 9, 2011
The Road to Recovery
Each day, I am reminded that our family is in the hands of the Lord and that He has power to work miracles in our day. He began watching over and blessing Daphne long before birth, and He has continued to bless her through her surgery and recovery. I am amazed at how well she has done post surgery. She is making a speedy recovery and looks better every day. The doctors have been so impressed with her progress that they are planning to discharge her this Friday, February 11. It looks like our heart baby will be out of the hospital before Valentine's Day!
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
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 bloodFri 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.
Tuesday, February 8, 2011
Family Reunion in AL
Will, Shelby, and my mother-in-law, Judy, arrived in Birmingham on Friday afternoon and stayed through Monday evening. Seeing them again, especially after such a difficult week, was just what I needed to help me relax and refresh.
When they arrived, Daphne was still in the CICU, where patients were housed in an open room and separated by curtains. Daphne had been extubated (taken off the ventilator) and placed on supplemental oxygen, but she was still hooked up to the other post-op IVs and monitors.
Initially, I didn’t plan to take Shelby into the CICU, because I worried that seeing Daphne like that would frighten her. But when she asked to see Daphne, I realized that keeping them apart would only confuse her. She needed to bond with her sister and see for herself what was keeping me away. Before taking Shelby into the unit, I sat her down and explained that Daphne had a problem with her heart and that the doctors were trying to fix it. I told her that Daphne would be covered in band aides to help her feel better. Shelby seemed to accept this simple explanation.
We approached Daphne’s bed as a family, Will at my side and Judy holding Shelby. Daphne was wrapped in multiple blankets, which concealed the IVs and cords, and she was sitting in a baby bouncer on top of her bed. The pacifier in her mouth hid the oxygen tube in her nose. She almost looked like a healthy newborn.
Will took Daphne’s tiny hand in his and spoke to her in a soothing voice; then he introduced Shelby to her sister. We encouraged Shelby to hold Daphne’s hand, touch her hair, and talk to her. She didn’t hesitate at all and was very gentle. During our visit, Will helped Shelby feed Daphne, and we all took turns snuggling her. When Shelby got restless, Judy took her to the waiting room, giving Will and me a few minutes alone with our new daughter. Seeing Will hold Daphne for the first time was incredible, because I could see the love and devotion in his eyes. On the drive back to our hotel, I praised Shelby for being such a good big sister and for being so gentle and helpful. With sincerity in her eyes, she proudly responded, “I didn’t hit her, Mom.” I have to agree, that’s a good start.
On Saturday morning, Daphne was strong enough to be transferred back to the NICU, which meant a personal room and no visiting restrictions. We spent the day at the hospital, taking turns holding her. Shelby showed sporadic interest in Daphne, but for the most part, she just wanted to play. Judy was a lifesaver; she did a fantastic job of keeping Shelby happy by taking her to the children’s playroom or on walks to explore the hospital. Shelby was fascinated by the statues of children sitting on benches that she found in one hallway.
On Saturday and Sunday, we spent time with Uncle Dan and Aunt Nora, who made the 4-hour drive from Tennessee to see us for less than 24 hours. We haven’t seen them since Randy’s funeral, so they got to meet both Shelby and Daphne for the first time. Dan and Nora are so friendly and thoughtful. It was wonderful to see them and to feel their love and support.
Over the last two weeks, Shelby’s world has been turned upside down and reinvented. She’s been a real trooper, but the changes have been hard on her. During our little family reunion, we wanted to spend time away from Daphne and do something just for Shelby. So on Monday morning, we took her to the McWane Science Center, a children’s museum featuring fun gadgets, hands-on science experiments, an indoor playhouse, a mid-size aquarium, and a dinosaur display. Shelby loved having the freedom to run and play; it was a little like being at home, where I take her on outings every week. The science center was fun for everyone; in fact, I think Will had even more fun than Shelby.
After the museum, we stopped back at the hospital so that Will, Shelby, and Judy could kiss Daphne goodbye; then I drove them to the airport to catch their flight. It was a short visit but just what I needed to make it through the next week or so. I can’t wait for all of us to be together at home.
Monday, February 7, 2011
The Agony of Waiting
Daphne’s surgery was scheduled for Thursday, February 3, at 1:00 p.m. I slept at the hospital on Wednesday night, because I couldn’t bear to leave Daphne alone before her big day. We spent Thursday morning curled up in a rocking chair, snuggling and comforting each other. In the early hours, I felt calm and confident, but as the day progressed, my stomach gradually tightened, my heart began to race, and my right arm started to twitch. One o’clock came and went, and our nurse Regina still hadn’t heard from the operating room (OR). My anxiety increased with each passing minute. I worried about the moment of separation, and I worried that the surgery would be postponed. Both seemed like terrible destinies.
Around 2:00 p.m., we received word from the OR. Regina placed Daphne in a portable incubator, and we wheeled her through a maze of corridors to another building in the hospital complex. We stopped in the middle of a distant hallway outside a set of double doors. Fortunately, they didn’t whisk Daphne away as I expected. We waited in the hallway for about 15 minutes, and I was allowed to touch her through a porthole in the incubator. I ran my hand over her soft, curly hair, touched her itty-bitty hands, and gave her (and myself) a little pep talk. I didn’t cry, but my heart ached.
Eventually, the anesthesiologist joined us in the hallway to outline her role in the surgery. She explained the risks of anesthesia, as required, but assured me that Daphne would be under constant supervision and that she would be in good hands. I had to trust her, otherwise, how could I put my daughter in her hands?
After that, I expected them to wheel Daphne through the double doors and down the hall while I watched, but instead a nurse guided me away, leading me to a waiting room. I suppose that was the easier of the two scenarios. It was difficult for me to leave Daphne, but as least it was voluntary and she wasn’t ripped from my arms.
I planned to be alone during the surgery, but my mother, feeling helpless in Utah, called the mission home here in Birmingham, Alabama, and asked the mission president if he could send someone to sit with me. He sent two senior sister missionaries, Sister Sommerfeldt and Sister Dunbar, to keep me company. What an incredible blessing! These sweet sisters brought the love of the Lord with them and provided the perfect distraction to keep me from fretting and pacing while Daphne was in surgery. Within minutes of their arrival, we were talking like old friends. After I shared my story, we discussed their families, the gospel, the missionary work in Alabama, and our impressions of the Birmingham area. Talking was therapeutic and comforting. It kept me sane and gave me courage. Isn’t it incredible that as members of the Church we belong to a worldwide family, where we can always find comfort and refuge, no matter how far we are from home? What an amazing gift from a wise and loving Heavenly Father!
When Daphne’s surgeon, Dr. Kirklin, met with me, he told me that, if everything went as expected, the procedure would take about three hours: one for the anesthesia to take effect and two to insert the BT shunt. When I checked my watch at 5:45 p.m., Daphne and I had been apart for almost 3.5 hours, and I assumed I would be hearing from Dr. Kirklin very soon. I wasn’t worried, because I knew that even minor delays would add up. At 6:00 p.m., the waiting-room receptionist checked the operation log and saw that the start time for Daphne’s surgery was listed as 5:00 p.m., which made absolutely no sense, so he suggested we call the OR for an update.
As the OR nurse spoke, my heart sank. He explained that, because Daphne was so small, the anesthesiologist had trouble accessing her veins. It took 2.5 hours to sedate her, so Dr. Kirklin didn’t start operating until 5:00 p.m. The nurse assured me that things were going well and that Dr. Kirklin didn’t seem concerned. Despite that, I felt distraught. I had thought we were nearing the finish line, but really, we were only halfway through the procedure. I cried for a bit and reported to Will and our parents. Eventually, I regained composure and resumed my vigil with Sister Sommerfeldt and Sister Dunbar.
At about 8:00 p.m., a nurse called my name and directed me and my guests into a smaller, more comfortable waiting room, where we waited for Dr. Kirklin to give his post-op report. At that point, I knew Daphne was out of surgery, and I felt a surge of adrenaline flow through my body. I felt relieved, elated, apprehensive, and grateful to my Heavenly Father. She was safe, and I would see her very soon—although, honestly, those last minutes were some of the hardest to endure.
After 20 minutes, Dr. Kirklin stopped by to let me know that the procedure had gone smoothly. He explained the delay with the anesthesia and also noted the miniature size of Daphne’s subclavian artery (the part of the aorta where he attached the BT shunt). During surgery, he took Daphne off Prostaglandin, the medicine keeping her ductus arteriosus from disappearing, and put her on Heparin, a blood thinner to prevent blood from clotting in her shunt. He said that the ductus arteriosus would disappear within 24 hours, and then we would find out if the surgery worked. That was terrifying news, because it meant Daphne’s safety net would be gone for good. For a moment, I panicked. After the surgeon left, I said goodbye to Sister Sommerfeldt and Sister Dunbar, and a nurse led me into the CICU (Cardiothoracic ICU).
I’ve always been a bit squeamish, so I felt apprehensive about seeing Daphne after surgery. I had been warned that she would be extremely swollen and hooked to a number of new tubes and monitors, including a ventilator, and I knew she would have a fairly large incision in her left torso. I worried that her condition would overwhelm me, and that fear made me feel like a terrible mother.
But I needn’t have worried. When I saw her, I was filled with relief and joy. She looked so beautiful and so much stronger than I expected. Her face and extremities were very swollen—especially her little lips, which bulged around the adhesive holding her ventilator in place. The skin on her forehead was dry and flaky from a monitor that had been used to track the oxygen levels in her brain during surgery. A thin tube attached to a syringe had been threaded through her nose and down to her intestine to help release excess air. She was receiving Heparin through the PICC line in her left arm but wasn’t on any pain medication yet. She had two new IVs (one in her neck and one in her right arm), plus a central line in her right wrist to monitor her blood pressure. The incision in her left side started below her armpit and curved up toward her shoulder blade. Just below that was a chest tube allowing excess fluid to drain.
I stood at Daphne’s bedside, running my fingertips across her skin and through her hair. She was still heavily sedated, but every now and then, her eyes flickered open, which I found reassuring. I stayed with Daphne until 10:00 p.m., when I finally became so exhausted that I feared I would collapse right there; then I returned to the Ronald McDonald House, where I slept soundly for the first time in over a week. Getting through surgery was just one small hurdle, but passing it felt like a major success, and I was at peace.
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.
Friday, February 4, 2011
Good News!
Yesterday was emotionally draining and interminably long. But I’m happy to report that Daphne made it through surgery and is doing extremely well in the CICU (Cardiothoracic ICU). The swelling is going down. She's breathing on her own. She's eating better than expected, and she's often alert. Will, Shelby, and my mother-in-law, Judy, are in town for the weekend, and they will get to meet Daphne later tonight.
Will and I are filled with gratitude to our Heavenly Father for protecting Daphne and sustaining our family during this stressful time, and we thank everyone who has joined us in praying and fasting for Daphne. Thank you so much for your love and support!
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!
Thursday, February 3, 2011
Photos of Our Darling Girl, Part 2
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!
The Arms of the Lord
Today was an emotional day for me. Even though I felt confident that Daphne’s surgery would go well tomorrow, I still struggled to subdue the heartache and stop the tears from flowing. When I picked up Daphne this morning, I felt different: anxious, protective, and completely helpless. I knew she needed her surgery, but the thought of being separated from her and watching her experience so much pain at such a young age broke my heart. For the first few hours of the day, I just sat in the rocking chair, crying and cradling my little one.
The Lord must have known today would be particularly difficult, because it seemed as if everywhere I turned there was someone to commiserate with, someone to ease my burden, someone to pray for me, or someone to open her arms and offer a much-appreciated hug.
First, there was V’s grandmother, who paused in my doorway to watch me rock my daughter while she imagined the day when her daughter-in-law would be able to hold her 1 lb. 9 oz. daughter. This woman spoke to me of miracles, telling me about her unexpected recovery from a brain tumor. Then she assured me that everything would be okay and promised to keep me in her prayers.
Next, I met the mother of a 9-lb. baby boy who was born at home. She expressed hope that she would be able to hold her son soon; then she asked me about Daphne’s condition. We spoke of our children and shared words of faith and encouragement.
A few hours later, I stopped by the Ronald McDonald House to let management know I would be sleeping at the hospital. As I spoke, my throat began to close, and tears filled my eyes. April, the assistant manager, asked me about Daphne (remembering her name from check in), offered words of encouragement, then asked if she could give me a hug.
On my way back to the hospital, I stopped to buy lunch. I must have looked awful, because the woman behind the counter asked me if everything was oaky. When I mentioned that my daughter would be having surgery tomorrow, she too offered me a hug, saying she has four children of her own and would pray for mine.
Earlier in the day, my mother contacted the mission home in Birmingham, Alabama, and requested that two missionaries visit me and give Daphne a blessing. The elders gave Daphne a beautiful blessing, saying that the surgery would go as planned and that the surgeon’s hands would be guided (among other things). This message filled me with peace and finally put a stop to the unpredictable flow of tears.
Later in the evening, as Daphne's day nurse Jan was preparing to leave, she reminded me to stop by any time if I needed support. Then she gave me another hug and left for the night.
Finally, as I entered the RNICU family room for a late dinner, I met up with another new mom, A, and her mother. These women shared their home-cooked dinner with me, and we swapped stories about our children. A’s son was born at 25 weeks and weighed just 1 lb. 7 oz. He has a heart condition similar to Daphne’s but won’t be operated on until he has grown a bit more. As these women left, A’s mother gave me a hug and promised to include me in her prayers.
Today I was filled with sorrow, but the Lord sent willing, open-hearted servants to wrap their arms around me and offer words of hope; through them, I could feel my Heavenly Father’s love and comfort. I was not alone today.
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.
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