tag:blogger.com,1999:blog-73713433189333563612024-02-06T22:15:00.557-07:00The Brief, Beautiful Life of Daphne Jane Gainera mother's reflections on life, death, and what comes nextUnknownnoreply@blogger.comBlogger34125tag:blogger.com,1999:blog-7371343318933356361.post-30218592585371485772012-08-31T17:38:00.000-06:002012-08-31T19:08:15.811-06:00Give a Little, Get a Lot: Free Heart Party Download<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">It’s hard to
believe it’s been almost 18 months since Daphne passed away. I still miss her
every day. I look at this photo—the only one that comes close to capturing the radiance
of her spirit—and I think how sad it is that so few people got to experience
her light in person. I have no doubt that she is very busy in the spirit world,
fulfilling the mission God has called her to serve. For my part, I feel obligated
to carry her light into the world and do as much good as I possibly can.<o:p></o:p></span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibvR-KeBU-BQdfqGkiMjpPorgkHXYYgTHh5FM8mJSknBi2CGM444c9Q9DK4YHMkxwtVVP2k1WDiC2WHNBO4O9e0GeNuYx5tNCWy5QhHo9nWtlyvrWNZM0olDkfj-lwoWvLKkcCDwVTN8MR/s1600/Daphne-9-Web.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibvR-KeBU-BQdfqGkiMjpPorgkHXYYgTHh5FM8mJSknBi2CGM444c9Q9DK4YHMkxwtVVP2k1WDiC2WHNBO4O9e0GeNuYx5tNCWy5QhHo9nWtlyvrWNZM0olDkfj-lwoWvLKkcCDwVTN8MR/s1600/Daphne-9-Web.jpg" /></a></div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">Because of Daphne,
I found a new “family” of heart moms—brave, humble mothers called as guardians
for great spirits born with broken hearts. It’s for these incredible women and
their children that I support the <a href="http://www.heart.org/">American Heart Association</a>, whose funding for
pediatric cardiac research is second only to the federal government’s.<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">One way I support
the AHA is by participating in my local <a href="http://heartwalkutah.org/">Heart Walk</a> and raising money specifically
for pediatric research and programs. (Learn more about the <a href="http://www.heart.org/HEARTORG/Affiliate/Los%20Angeles/California/Moms-with-Heart_UCM_429589_SubHomePage.jsp">Moms with Heart program</a>.)<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">My fundraising goal
for this year is $2,500. It’s an ambitious goal, but it’s a great cause. Did
you know that 1 in 100 babies is born with a CHD? That’s a lot of children and
families who benefit from ongoing pediatric research. You can help these
children by making a donation today! Here’s how:<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">Option
1: </span></b><span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">Donate $25 through <a href="http://heartwalkutah.kintera.org/faf/search/searchTeamPart.asp?ievent=1000224&lis=0&kntae1000224=F40B89E031E948AEABF3AEE9D51D290B&supId=0&team=4967644&cj=Y">my official Heart Walk webpage</a>.
This is the smallest donation accepted online by the AHA.<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">Option
2:</span></b><span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"> If you can’t give $25, please make a smaller
donation via <a href="https://www.paypal.com/webapps/mpp/send-money-online">PayPal</a> to rachel_l_gainer@yahoo.com. Every dollar makes a
difference—$2, $5, $10, whatever you can give.<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">As a thank you for
your donation, please <b style="mso-bidi-font-weight: normal;"><a href="https://www.transferbigfiles.com/c6d7492d-6e1d-4a02-bab5-89086a86928d?rid=_lZpa5qy0pmHUmZafQny_Q2">download this free heart party</a></b><b style="mso-bidi-font-weight: normal;"> </b>designed in honor of
Daphne by my friend Shasta Knight from Sassy Dean.<o:p></o:p></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwEvcmVyZFQwlB-PtwkWsxmY59FWMS7VJpzlIXKT0uHfne0FQW1UAc1YzVjnfLnT3QyslcW3zXcgd5NCql_uTt7mQj5IiTuzC2mqHc7ZtqORcFEiPtrV01q_IA1Cqu-dBrIOf_jADx5K4_/s1600/Alphabet-29.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwEvcmVyZFQwlB-PtwkWsxmY59FWMS7VJpzlIXKT0uHfne0FQW1UAc1YzVjnfLnT3QyslcW3zXcgd5NCql_uTt7mQj5IiTuzC2mqHc7ZtqORcFEiPtrV01q_IA1Cqu-dBrIOf_jADx5K4_/s320/Alphabet-29.jpg" width="258" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgimiIp9sHNo2qnt58ABFASRTyE7iK751Tsm2lLrmYlde849qSALrk7ZZMe7HhM0839ETpiaxd_OkfB8D8ANnWN0mkers-8RNJH4_kpSLNXQMJNQGdxfFqON9HrVV5VfPyjkG-a622sHF14/s1600/Cupcakewrappers-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="319" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgimiIp9sHNo2qnt58ABFASRTyE7iK751Tsm2lLrmYlde849qSALrk7ZZMe7HhM0839ETpiaxd_OkfB8D8ANnWN0mkers-8RNJH4_kpSLNXQMJNQGdxfFqON9HrVV5VfPyjkG-a622sHF14/s320/Cupcakewrappers-2.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhn8oZCnNWo8FE8vPFGyIWGY5TrRAuJzbmCsmBKN6j3tsAis7vrOnI0s9S4ogytgmpRP5y1Az-Y1BvlEoFsQt89-wN6OUQMKeh_MSBq_hmr9nVROX_ZNWQ7RlkJRUImFZNrfiGM2cYGmpl/s1600/Cards-3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhn8oZCnNWo8FE8vPFGyIWGY5TrRAuJzbmCsmBKN6j3tsAis7vrOnI0s9S4ogytgmpRP5y1Az-Y1BvlEoFsQt89-wN6OUQMKeh_MSBq_hmr9nVROX_ZNWQ7RlkJRUImFZNrfiGM2cYGmpl/s320/Cards-3.jpg" width="232" /></a></div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">The party includes alphabet
and heart pennants for a banner, six different cupcake wrappers, and fill-in-the-blank
notecards for a baby shower, bridal shower, birthday, or other happy gathering.</span></span></div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;"></span></span> </div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">Heart moms, use this party to celebrate your heart hero's birthday, homecoming, operation anniversary, angel anniversary, or other special day.</span></span></div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">Please share the
link to this <i style="mso-bidi-font-style: normal;">free</i> party download with
everyone you know. Link to it on <a href="http://pinterest.com/">Pinterest</a>. Share Daphne’s story, and help me
reach my fundraising goal so that other heart babies will live longer, fuller
lives.<o:p></o:p></span></span></div>
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<span style="font-size: 10pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">Thank you for your
support!</span></span></div>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7371343318933356361.post-35032371790938817822012-04-08T22:23:00.000-06:002012-04-08T22:23:03.706-06:00He Is Risen . . . and She Will Rise Again!<span style="font-family: Calibri;">It’s 11:00 p.m. on the eve of Easter. For me, the hour is significant. It represents the moment on March 18, 2011, when my beautiful Daphne left her earthly body and returned to her heavenly home.</span><br />
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<span style="font-family: Calibri;">As Easter morning approaches, my thoughts are turned to my Savior and His earthly ministry. I marvel at the miracles He performed and the faith of those He healed. I think of the woman with an issue of blood, who <i style="mso-bidi-font-style: normal;">knew</i> that if she could just touch Christ’s robe she could be made whole (Matthew 9:20-22). I think of Jarius, who <i style="mso-bidi-font-style: normal;">knew</i> that Christ had the power to raise his daughter from the dead (Matthew 9:18). These faithful disciples understood Christ’s divine role as the Savior of the world. They believed that He was the Son of God and that He had the power He claimed to have.</span><br />
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<span style="font-family: Calibri;">When we had Daphne with us, the Spirit confirmed to me many times that Christ had the power to heal her broken heart—to perform a miracle that would shock the modern world. I prayed and prayed for that miracle. I wanted to be as faithful as Christ’s disciples in the New Testament, worthy of His divine intervention. The night Daphne passed—when I knew I would not get the miracle I had been seeking—I felt the Spirit remind me again that Christ could mend a broken heart. This time, I knew the Spirit was talking about my broken heart. Daphne’s was already whole.</span><br />
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<span style="font-family: Calibri;">Over the last year, I’ve turned to my Savior again and again, calling upon the power of the Atonement to help me overcome feelings of sorrow, loneliness, and guilt. I’ve begged Him to hold me in my darkest moments, and I’ve asked Him to fill my heart with hope and charity. There have been many difficult days when my arms have ached for my daughter, when I’ve felt as if the longing would swallow me up. But every day has also been filled with gratitude, joy, and humility, as I’ve remembered Daphne’s incredible radiance and wisdom. What an honor to be called as the mother of such a strong, faithful spirit!</span><br />
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<span style="font-family: Calibri;">As I anticipate the glory of Easter morning, I ponder the gift of the Atonement, which provides a way for me to repent and be reconciled with God. Without this marvelous gift, I would never be worthy to return to God’s presence. Instead, I would be eternally separated from my bright-eyed angel, who has already received a place in God’s kingdom.</span><br />
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<span style="font-family: Calibri;">But repentance is not the only purpose or blessing of the Atonement. The Atonement is an enabling power. It can heal any wound, restoring that which seems beyond repair. It makes it possible to endure and overcome all things.</span><br />
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<span style="font-family: Calibri;">When Daphne passed away, I thought my heart would never feel whole again. But I underestimated the power of the Atonement. When I began my journey with grief, I asked the Savior to help me find my way. Little by little, as I’ve called upon the power of the Atonement, I’ve felt the broken pieces of my heart reform into something stronger and more durable.</span><br />
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<span style="font-family: Calibri;">In this new heart, there is a special place for Daphne. It is a warm, sensitive spot, where I hold all my memories of her. It is also where I carry my grief. Grief is not the enemy I imagined at first. It is a quiet reminder that I have a child waiting for me on the other side. It is an outlet for sorrow and an inlet for joy. When I envisioned a healed heart, I imagined I would have to give up missing my daughter. But I am only mortal, and even with my knowledge of the gospel, it is impossible not to feel her absence. My Savior understands this, and He has made room in my healed heart for the complex emotions of grief. My heart is starting to feel whole again, because my Savior has bound it up and made it strong enough to endure the separation.</span><br />
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<span style="font-family: Calibri;">This Easter, I will celebrate the Resurrection with increased gratitude. I will envision an empty tomb and rejoice, for He is risen! My Savior lives! And because He lives, I know that my sweet Daphne will also live again.</span><br />
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<span style="font-family: Calibri;">One day, she and I will be together again—our hearts made whole through the Atonement, our reunion made possible through the Resurrection. We will kneel before our Savior, hearts overflowing with gratitude and love. This is my testimony. In the name of Jesus Christ, amen.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ1BH4ejHx772pRNhnfM9O_oGPsWIo21L6ZE3m2d5J8HnL2OK2EOXPPfziyh9RXtd5Nk6OpZoiQUxeZv1ZBImfYXnzTVxLilkdIrkMg8XiIKDaODhmtUzrrnT4yS2km1CbBwr-3yXr0yIj/s1600/Daphne-12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ1BH4ejHx772pRNhnfM9O_oGPsWIo21L6ZE3m2d5J8HnL2OK2EOXPPfziyh9RXtd5Nk6OpZoiQUxeZv1ZBImfYXnzTVxLilkdIrkMg8XiIKDaODhmtUzrrnT4yS2km1CbBwr-3yXr0yIj/s320/Daphne-12.jpg" width="213" /></a></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7371343318933356361.post-48564141278715320202011-08-18T21:09:00.001-06:002011-08-19T10:09:20.240-06:00Five Months Apart<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", "sans-serif"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Daphne passed away five months ago, today. On these monthly anniversaries, 11:00 p.m. is the hardest hour for me to face. It marks the time when part of my heart left the earth, and I became a different person. Over the last five months, I’ve tried to reclaim the woman I was before Daphne’s passing, but it’s impossible. It’s hard to explain how I’m different. I suppose I’m both better and worse.</span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", "sans-serif";">I used to be a perfectionist, giving 110 percent to every aspect of my life, but I seem to have lost the focus and drive I once had. Most things just don’t seem important enough to warrant that kind of sacrifice or commitment. I can still give 110 percent, but I won’t give it to just anything. I’m more selective about how I spend my time, and I’m better at knowing when 90 percent is good enough. (I mean, is it really necessary to scrub the counters three times before declaring them clean?) Sometimes this makes me better at prioritizing and putting the most important things first, but sometimes it makes me stand in the middle of a room, feeling lost and unmotivated. I’m grateful that my priorities have shifted, but I miss being a little OCD. I miss feeling put together and on top of my life, and I miss the satisfaction of going the extra mile. You’d think I could just decide to go back to my old ways, but it’s not that simple. I’m not that person anymore.</span><span style="font-family: "Trebuchet MS", "sans-serif"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", "sans-serif";">I’ve always been a compassionate person, sensitive to others’ sorrows, but now I finally understand the difference between <i style="mso-bidi-font-style: normal;">sympathy</i> and <i style="mso-bidi-font-style: normal;">empathy</i>. Before I lost Daphne, I mourned with those who mourned and comforted those who stood in need of comfort, but I didn’t really <i style="mso-bidi-font-style: normal;">know</i> grief. I didn’t understand its complexity or its permanence. Now when I hear about other tragedies and trials, it opens the wound in my heart. I weep for the individuals who are suffering and for my own loss. I remember the darkest moments of my life, and I wish I could wrap my arms around the bereaved and shield them from the long road ahead. Healing and peace will come, and grief will become a soft whisper, but it will never leave, and their world will never be the same. Knowing that is as heart-rending for me as that first, fresh pain.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", "sans-serif";">Losing Daphne has made me more empathetic and more charitable, but I’m ashamed to admit it has also made me more selfish. I want everyone to love and miss her as much as I do, but each new tragedy reminds me that isn’t possible. For me, the pain of losing Daphne is still fresh, but for everyone else, new sorrows have pushed her story into the world’s collective past. I know family and friends still love her and think of her—a dear friend visited her grave just last week—but it isn’t the same for them. Of course, it can’t be, just as my grief for others isn’t the same as my grief for Daphne. I guess I’ve been running from grief by trying to make Daphne’s life powerful and inspiring for others, as if that will make her death more bearable. But it won’t. My baby has left this world, and I feel her absence even though I know she is happy and safe.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", "sans-serif";">I have to remember that Daphne’s life mattered to me and it mattered to God. And that is enough. Anything else I do with her story or her name must be done in the name of the Savior. I think Daphne would want it to be about His life, not just hers. Perhaps that is how I will recapture myself.</span></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7371343318933356361.post-86959525020347659462011-08-18T19:27:00.000-06:002011-08-18T19:37:36.627-06:00In Loving Memory: Bows for AL Babies<span style="font-family: "Trebuchet MS", "sans-serif"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">After Daphne passed away, I needed a way to think about her without focusing on my grief. I wanted to remember the blessings and miracles and ignore the unanswerable questions that made me feel weak, guilty, and ungrateful. I wanted to do something to honor her memory, thank the doctors and nurses who cared for her, and comfort other moms with sick babies.</span> <br />
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</div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", "sans-serif"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">The week after Daphne’s funeral, I began making small, handmade hair bows to send to UAB hospital in Alabama. With the help of several friends, I made 350 ribbon bows and 100 mini felt flowers (inspired by felt flowers I saw on the blog <a href="http://www.makeit-loveit.com/2011/03/baby-hair-accessories-wool-felt.html#more">Make It and Love It</a>), which I divided into 50 packages. Finishing this project took longer than expected, because we adopted <a href="http://rachelgainer.blogspot.com/2011/05/meet-phoebe-quinn-gainer.html">Phoebe</a> just one month after losing Daphne, but I finally shipped the bows to UAB with a lengthy thank you note and a request that they distribute the bows to other moms staying in the RNICU.</span></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;"><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5e7UquBdZlfkzxWOKKssjC1vIOXRh_JRZjs9IA97sTxrEJP5U0L8lAh-fW5-UGpFTetPKMliOIvLzEJuUriU7B5jVbpYrmKCAbev6sLumt9O_q1gCi96-tDo50YXYxwpbNM7az2Z60jhR/s1600/Bows+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="155" qaa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5e7UquBdZlfkzxWOKKssjC1vIOXRh_JRZjs9IA97sTxrEJP5U0L8lAh-fW5-UGpFTetPKMliOIvLzEJuUriU7B5jVbpYrmKCAbev6sLumt9O_q1gCi96-tDo50YXYxwpbNM7az2Z60jhR/s320/Bows+1.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6lIkWUclCHCCPRXKdT29J59Y-MuJf-TownhF_-CB9NFTTeTW6LGV9B96d-rXD7fkGtRntGc81icDGOZade1Tw1fxsrBgJlFqIDcPFBPB8NgIOBnSYsUDI1exORqWsBcqj5OSYBu8KLBJr/s1600/Bows+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" qaa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6lIkWUclCHCCPRXKdT29J59Y-MuJf-TownhF_-CB9NFTTeTW6LGV9B96d-rXD7fkGtRntGc81icDGOZade1Tw1fxsrBgJlFqIDcPFBPB8NgIOBnSYsUDI1exORqWsBcqj5OSYBu8KLBJr/s320/Bows+2.jpg" width="320" /></a></div></div><div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", "sans-serif"; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Working on the bows was therapeutic. It gave me an excuse to think of Daphne and a way to share her story—something I feel compelled to do. I hope those who receive the bows will feel a small measure of comfort from my simple offering.</span></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7371343318933356361.post-91172191099831270192011-05-17T08:43:00.000-06:002011-05-17T10:48:14.453-06:0058 Days<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", sans-serif;">58 days. An entire lifetime for my little girl.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", sans-serif;">On Sunday, we passed day 58 again, and today is day 60. </span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", sans-serif;">I don’t count every day that Daphne is gone, but I have been anticipating this moment for a while: my daughter has been gone longer than she was here. And every 58 days, from now to eternity, I’ll live another lifetime without her.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", sans-serif;">Since Daphne’s passing, I’ve been trying to find ways to hold on to her, to keep her story alive:</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoListParagraph" style="margin: 0in 0in 0pt 0.25in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;"><span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman";"> </span></span></span>I spent two weeks putting together a family photo collage for my living room, when I’ve never been one to put holes in my walls.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt 0.25in;"><br />
</div><div class="MsoListParagraph" style="margin: 0in 0in 0pt 0.25in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;"><span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman";"> </span></span></span>I’ve been working on packages of baby bows to send to UAB hospital, where Daphne spent half of her lifetime.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt 0.25in;"><br />
</div><div class="MsoListParagraph" style="margin: 0in 0in 0pt 0.25in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;"><span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman";"> </span></span></span>I’ve been slowly working on an idea for a foundation inspired by our experience with Daphne.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt 0.25in;"><br />
</div><div class="MsoListParagraph" style="margin: 0in 0in 0pt 0.25in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;"><span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman";"> </span></span></span>On the very day we adopted Phoebe, I attended a luncheon for heart moms, hosted by <a href="http://intermountainhealinghearts.org/">Intermountain Healing Hearts</a>. I just wanted to feel part of that community, even though I won’t experience a fraction of what many of those amazing moms have as they’ve cared for their sweet heart babies year after year. I have plans to get more involved with this organization in the future.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt 0.25in;"><br />
</div><div class="MsoListParagraph" style="margin: 0in 0in 0pt 0.25in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;"><span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman";"> </span></span></span>On Mother’s Day, I shared Daphne’s story with a room full of young women and their moms. A friend at our adoption agency invited me to visit her ward and share some of my spiritual experiences related to Daphne’s adoption and heart condition. To some people, this seemed like a cruel thing to have to do on my first Mother’s Day without Daphne, but for me, it was a blessing to have an excuse to focus on her. I love talking about her and sharing her story.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", sans-serif;">I think about my angel every day. But I try not to wonder what we would be doing if she were here, because that was never God’s plan. Instead, I try to imagine what she is doing on the other side—what she looks like, who she is with, the missionary work she is doing. I think about what she would want me to be doing here. Sometimes this helps; sometimes it doesn’t.</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Trebuchet MS", sans-serif;">One of my deepest sorrows is that we haven’t been able to complete Daphne’s sealing yet. The final adoption paperwork is lost in the court system, and it seems to be taking forever. I had really hoped to be sealed before day 58. Please pray that everything will go through soon. I’m anxious to have our family bound together for eternity.</span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7371343318933356361.post-43400234079459360322011-04-29T02:35:00.000-06:002011-05-05T19:50:44.114-06:00The Power of the Comforter<span style="font-family: "Trebuchet MS", sans-serif;">Daphne passed away exactly six weeks ago, today.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">If you're interested in keeping up with Daphne's story, you can visit <a href="http://daphnejanegainer.blogspot.com/">daphnejanegainer.blogspot.com</a>. There’s nothing there right now, but there will be soon.</span><br />
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<span style="font-family: Trebuchet MS;">Thanks for all your love and support. We could not have made it through the last six weeks without our wonderful family and friends.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7371343318933356361.post-33871669526414045342011-03-19T10:38:00.000-06:002011-08-18T19:40:28.785-06:00A Brief, Beautiful Life<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS;"><strong>Daphne's Funeral Services</strong></span><br />
<div><span style="font-family: "Trebuchet MS", sans-serif;">Funeral services for Daphne Jane Gainer will be held on Tuesday, March 22, 2011, at 11:00 a.m. at the HH8 Ward chapel (2101 N Providence Dr., Saratoga Springs, UT 84045). A public viewing will be held before the service from 9:30 to 10:45 a.m. Following the service, Daphne will be interred at Larkin Sunset Gardens Cemetery (1950 E 10600 S, Sandy, UT 84092). All who wish to help us say goodbye to our sweet girl are welcome to attend. </span></div>Unknownnoreply@blogger.com25tag:blogger.com,1999:blog-7371343318933356361.post-55179443928904102902011-03-11T14:50:00.000-07:002011-05-05T19:41:28.982-06:00Should I Panic?<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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).</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">No one can explain Daphne’s strange cycle of decline and recovery. We’re just grateful she always seems to rebound.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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!</span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7371343318933356361.post-76329672550598333012011-03-08T15:03:00.000-07:002011-05-05T19:41:42.221-06:00Miracles Have Not Ceased<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.”</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">In the name of Jesus Christ, amen.</span>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-7371343318933356361.post-87074554066266605442011-03-02T18:27:00.000-07:002011-05-05T19:41:55.326-06:00First Heart Catheterization<span style="font-family: "Trebuchet MS", sans-serif;">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.</span> <br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.”</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQXFkJVVMd6ixInW75Sn3OxmQf0FWoZF6d4mBUbvnd9L0pL795VyKsuYzXnM69ZU8Os0Ld9ZG7w4hjCsoCF-CCGl3py-LtXuo6N3zmyObIgYaYLpdrtCtkP2Zxfb2UojbbUUvoMot-Taw/s1600/IMG_8716.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQXFkJVVMd6ixInW75Sn3OxmQf0FWoZF6d4mBUbvnd9L0pL795VyKsuYzXnM69ZU8Os0Ld9ZG7w4hjCsoCF-CCGl3py-LtXuo6N3zmyObIgYaYLpdrtCtkP2Zxfb2UojbbUUvoMot-Taw/s320/IMG_8716.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwoB70sOWiMi1PfSMNVoThO2bcbmVYw62Wc414frdp21VCfeMYaT8ydxAySetVDzEiZsEMgR-lUg2cB1jBMxg7BmhK6eKAgfMob_Q0_HQqlpDTPBB9cxWgssVKTJHZgvw4hpISald9j-8/s1600/IMG_8727.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwoB70sOWiMi1PfSMNVoThO2bcbmVYw62Wc414frdp21VCfeMYaT8ydxAySetVDzEiZsEMgR-lUg2cB1jBMxg7BmhK6eKAgfMob_Q0_HQqlpDTPBB9cxWgssVKTJHZgvw4hpISald9j-8/s320/IMG_8727.JPG" width="320" /></a></div><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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!</span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7371343318933356361.post-61966289208321090302011-02-28T10:00:00.000-07:002011-05-05T19:42:16.834-06:00Marked with Love<span style="font-family: "Trebuchet MS", sans-serif;">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?</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijQzaELpQxGSoTCBOWcYhUya7VpQUn0H-zrEqKhvMDa3NThqHsMpK-1Qsb943xbnNrhyphenhyphen5Jw8LwJ6-8fBQ4RFfpVRzgpQRHYvNW8bydAMh7ku2ZJrDa-PCAMSOyNVW7FfBlMrp2wnDaWmU/s1600/IMG_8663.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijQzaELpQxGSoTCBOWcYhUya7VpQUn0H-zrEqKhvMDa3NThqHsMpK-1Qsb943xbnNrhyphenhyphen5Jw8LwJ6-8fBQ4RFfpVRzgpQRHYvNW8bydAMh7ku2ZJrDa-PCAMSOyNVW7FfBlMrp2wnDaWmU/s320/IMG_8663.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghqPgeeC8jBa6PMAfZWmxLGyLLRRaWQuuAnkT4ldzx_OXY5M89eewlGQhCn7SskEBk8n4VLg1yI4gRz6eH1r8AT_zKNExq6Fui5QUoBqPHGhdpum5i55V5ymK0iwGd2lFzQoYYqduhDx4/s1600/IMG_8667.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghqPgeeC8jBa6PMAfZWmxLGyLLRRaWQuuAnkT4ldzx_OXY5M89eewlGQhCn7SskEBk8n4VLg1yI4gRz6eH1r8AT_zKNExq6Fui5QUoBqPHGhdpum5i55V5ymK0iwGd2lFzQoYYqduhDx4/s320/IMG_8667.JPG" width="213" /></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7371343318933356361.post-48737352944455473732011-02-27T21:39:00.000-07:002011-05-05T19:42:33.132-06:00Notes from Little Friends<span style="font-family: "Trebuchet MS", sans-serif;"></span><span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_fTHNmdG00Va7ySQAxUpDRr-NYK3ngf1SiF94-rnNlHTaEm_-7YLYsGsmGInDFrLixPU7y5vDfyHAsTDmfc0JnFawC7ZT2yKPKabBGouyuPsk67zU_R4K0gj9aBxdxlKqPfOdk0djpgo/s1600/IMG_8670.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_fTHNmdG00Va7ySQAxUpDRr-NYK3ngf1SiF94-rnNlHTaEm_-7YLYsGsmGInDFrLixPU7y5vDfyHAsTDmfc0JnFawC7ZT2yKPKabBGouyuPsk67zU_R4K0gj9aBxdxlKqPfOdk0djpgo/s320/IMG_8670.JPG" width="320" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6Gf0s9KbCdneOuD9jMq4ERqANibYwMjjiDTyX9FG286pnwSK1-zbO2kjJZSzOLKjsvH35yn3-2tFHn3-hf3IzDCVSX0GmsVtqUEeILH5p2rj1PPqkKcMDUtpi2GpMH0Z41VGWiApamxo/s320/IMG_8675.JPG" width="320" /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;"><strong>photo</strong> <em>This drawing by Julia is of the Cat in the Hat.</em></span></div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbHxkvh8WGVLcKOsi_8SFi9OoC0g_Xf81mBVhrEeqrJrnaWmXLOQkk0bnqhNSmP-Gi8ek8q6IGv55s-b5uD0UwxNMXNZ8VPp6bCEyevo6VU3Iuk4RvSoRMtLnqLVgje6jUmggCbNqdGEw/s1600/IMG_8673.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbHxkvh8WGVLcKOsi_8SFi9OoC0g_Xf81mBVhrEeqrJrnaWmXLOQkk0bnqhNSmP-Gi8ek8q6IGv55s-b5uD0UwxNMXNZ8VPp6bCEyevo6VU3Iuk4RvSoRMtLnqLVgje6jUmggCbNqdGEw/s320/IMG_8673.JPG" width="320" /></span></a></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;"><strong>photo </strong><em>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."</em></span></div><div style="text-align: left;"><br />
</div><div style="text-align: left;"><span style="font-family: Trebuchet MS;">Thanks, girls!</span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7371343318933356361.post-43928988076969638472011-02-26T16:46:00.000-07:002011-05-05T19:42:47.953-06:00Back in the Hospital<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdDTD_cIU_5dhdDAWmXuDwtcdmhaLTiQtSQJKmfTBNrHwKUXE7wWoQ7deggQbIN3Dcy6NxBwViP630R7FFx0lhSsohAqCAC4PpSvnwb74VaQT8y08GpbIaTbyibIEpsX8DU2ZmsaQ9NBY/s1600/IMG_8649.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdDTD_cIU_5dhdDAWmXuDwtcdmhaLTiQtSQJKmfTBNrHwKUXE7wWoQ7deggQbIN3Dcy6NxBwViP630R7FFx0lhSsohAqCAC4PpSvnwb74VaQT8y08GpbIaTbyibIEpsX8DU2ZmsaQ9NBY/s320/IMG_8649.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHlJOceKZ3KKPN-DLxyeixsIJ4jsCTGiXaCk7nPSGjkZQsxCdpREZQbvEzT8-YwH8FXyakfxJG-EBApNeSSdeJGMlewUrwUHNwFNJAVgIBOgPUFDpagbXjS_JE1lP-KvwvibVfxZtB1w4/s1600/IMG_8653.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHlJOceKZ3KKPN-DLxyeixsIJ4jsCTGiXaCk7nPSGjkZQsxCdpREZQbvEzT8-YwH8FXyakfxJG-EBApNeSSdeJGMlewUrwUHNwFNJAVgIBOgPUFDpagbXjS_JE1lP-KvwvibVfxZtB1w4/s320/IMG_8653.JPG" width="320" /></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7371343318933356361.post-72959097537223248662011-02-25T01:20:00.000-07:002011-05-05T19:43:02.445-06:00How to Be a Great Big Sister<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMT5a4lUqq7u6tFPygqs_zWfVR7yBhhCCdUGyvk3Ro-JMPCse-SQWoUe9WeBZ9VkdmpluE2g_EBu33VvUuX4Pboq3Pj5b9u7yMTwMjsmkqnnIuey38JftE1TJn2Q26CnTJcoPHxTH68YE/s1600/IMG_8626.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMT5a4lUqq7u6tFPygqs_zWfVR7yBhhCCdUGyvk3Ro-JMPCse-SQWoUe9WeBZ9VkdmpluE2g_EBu33VvUuX4Pboq3Pj5b9u7yMTwMjsmkqnnIuey38JftE1TJn2Q26CnTJcoPHxTH68YE/s320/IMG_8626.JPG" width="320" /></a> </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfy0FCTBZTqBRRX8kKYoAZSKeafihLEB_hnSxSQ5qosuPhBuWTU3PLwj5sRIl3kuLfgDLJCoCc-gGt8w6Px1twRZgPbfz7hyphenhyphenm4q7VyMnbxyyWHDIDr9by9G9_S3auReeL_9sS-HAsfaNM/s1600/IMG_8630.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfy0FCTBZTqBRRX8kKYoAZSKeafihLEB_hnSxSQ5qosuPhBuWTU3PLwj5sRIl3kuLfgDLJCoCc-gGt8w6Px1twRZgPbfz7hyphenhyphenm4q7VyMnbxyyWHDIDr9by9G9_S3auReeL_9sS-HAsfaNM/s320/IMG_8630.JPG" width="320" /></a></div><span style="font-family: "Trebuchet MS", sans-serif;"><strong>photos</strong> <em>Shelby set up this circle of stuffed animals to keep Daphne happy.</em></span> <br />
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<span style="font-family: "Trebuchet MS", sans-serif;"><span style="font-family: "Trebuchet MS", sans-serif;">Before</span> 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.”</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7371343318933356361.post-18907573765655048652011-02-25T01:16:00.000-07:002011-05-05T19:43:15.091-06:00Sweet Home AL to Home Sweet Home<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7371343318933356361.post-58235467017921808652011-02-17T12:58:00.000-07:002011-05-05T19:43:39.144-06:00Phase One Complete<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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!</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<div style="text-align: center;"><span style="font-family: "Trebuchet MS", sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTufsVVfPdYIqcNOCO75OeqrtDvN2LuGSH4-cpyqmIdQsRBjXzAA65vAEMf0So8qunIYezWe4M2vJxUg13YBzLoDUN-8C-5rTcJjy9m1w6Tero-CJzuMnV0Eg5YqnCcv8GyL4ziYKQcv0/s1600/IMG_8586.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTufsVVfPdYIqcNOCO75OeqrtDvN2LuGSH4-cpyqmIdQsRBjXzAA65vAEMf0So8qunIYezWe4M2vJxUg13YBzLoDUN-8C-5rTcJjy9m1w6Tero-CJzuMnV0Eg5YqnCcv8GyL4ziYKQcv0/s320/IMG_8586.JPG" width="320" /></a></span></div><div style="text-align: center;"><span style="font-family: "Trebuchet MS", sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRQ73VSPtpaloxDRkPJpijmu1WMnSs76LJFWMJeFNUfN7ctniY82hPztT0VMTg9j2zVoQAdT0h0l8vjW9ecClI3sL69Baz3HMGsinn4aKbMThXN3MVKHHmScatIgrAIZXY0qKYHWLLvEU/s1600/IMG_8590.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRQ73VSPtpaloxDRkPJpijmu1WMnSs76LJFWMJeFNUfN7ctniY82hPztT0VMTg9j2zVoQAdT0h0l8vjW9ecClI3sL69Baz3HMGsinn4aKbMThXN3MVKHHmScatIgrAIZXY0qKYHWLLvEU/s320/IMG_8590.JPG" width="213" /></a></span></div><div style="text-align: center;"><span style="font-family: Trebuchet MS;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8h9nfeJqnNh2IlxewH4DO2V7mle5NxWwHGw9xbkEzmqW8F5aBObV-Y_uL_kFt6OehTze1-704zF9mYlDLnri82d1Gl4li6yieRdb7fu55dFidvRe0kpprR8EcpGxwMwH5GYnoA7vtHW0/s1600/IMG_8594.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8h9nfeJqnNh2IlxewH4DO2V7mle5NxWwHGw9xbkEzmqW8F5aBObV-Y_uL_kFt6OehTze1-704zF9mYlDLnri82d1Gl4li6yieRdb7fu55dFidvRe0kpprR8EcpGxwMwH5GYnoA7vtHW0/s320/IMG_8594.JPG" width="320" /></a></span></div><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr6bejg0DNiwQxrOVN5EWhY51i3AXiI5A8mYVTentyXNcQ0SP6nhUgk3ofYv2KWXV57YKvuqM_1GNI77gf6MoIvh9kLZ4myaC58k_LCRpLfidW1_sDuObqcsL6I-XNT6WgQNddPOm_bjU/s1600/IMG_8609.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr6bejg0DNiwQxrOVN5EWhY51i3AXiI5A8mYVTentyXNcQ0SP6nhUgk3ofYv2KWXV57YKvuqM_1GNI77gf6MoIvh9kLZ4myaC58k_LCRpLfidW1_sDuObqcsL6I-XNT6WgQNddPOm_bjU/s320/IMG_8609.JPG" width="320" /></a></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGeWj1EactYFZ0e5qb6GwNVRT4xkskYDp9tWCCTA4j29D0MpI07FtXNX9jiG1dkiNKnsRxWxduUV7u_f17d_gWsnvbSrKkBpr9n_GwfPu_Jzq0RBTxpVejPMnE-1YfXjn_EnO74Mej7_Q/s1600/IMG_8606.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGeWj1EactYFZ0e5qb6GwNVRT4xkskYDp9tWCCTA4j29D0MpI07FtXNX9jiG1dkiNKnsRxWxduUV7u_f17d_gWsnvbSrKkBpr9n_GwfPu_Jzq0RBTxpVejPMnE-1YfXjn_EnO74Mej7_Q/s320/IMG_8606.JPG" width="320" /></a></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT99HOZuPdzXAXbx7VunHL5yy1UBF7A9aDCXn4LukKJQRYwITa2459oDEGgHyr5IUFtsXCds4LXdHKL8wbt04tkMtyA9nHF-9jkYCugtC-Un0i9NiEUQ_8PnlBe_LVlgopg8ygiKsV-58/s1600/IMG_8616.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" j6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT99HOZuPdzXAXbx7VunHL5yy1UBF7A9aDCXn4LukKJQRYwITa2459oDEGgHyr5IUFtsXCds4LXdHKL8wbt04tkMtyA9nHF-9jkYCugtC-Un0i9NiEUQ_8PnlBe_LVlgopg8ygiKsV-58/s320/IMG_8616.JPG" width="320" /></a></div><br />
<div style="text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-7371343318933356361.post-35072995950398351572011-02-15T15:12:00.000-07:002011-05-05T19:43:52.719-06:00An End in Sight<span style="font-family: "Trebuchet MS", sans-serif;">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!</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisTzqTMxa-xUMBVlNRKKR5TMhLxHxqaahzYkNlrZKSb6Qmb0KB1tMeaNhw3PaMX31dD5SgHDEHqm66Uj_mOU0yzGiZvltC5cyQ-W0r-kOUjzzCdqPbhZu-xq7pe3WNnCdCY1Tz4CyZ3Xs/s1600/IMG_8578.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisTzqTMxa-xUMBVlNRKKR5TMhLxHxqaahzYkNlrZKSb6Qmb0KB1tMeaNhw3PaMX31dD5SgHDEHqm66Uj_mOU0yzGiZvltC5cyQ-W0r-kOUjzzCdqPbhZu-xq7pe3WNnCdCY1Tz4CyZ3Xs/s320/IMG_8578.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEGN3Fw4KKZZRNRNaqvpTB8TKnksspruyomY0GSInpkwqITwEDrXQ6W2_HfdN20yt7Bfkrvth9gen7uNDzZ8ng32AVoKow1VjfkpQfY2XLc4AzQlUDQoTKx8b8dE8z1dhSJvqjvQCeZF0/s1600/IMG_8557.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEGN3Fw4KKZZRNRNaqvpTB8TKnksspruyomY0GSInpkwqITwEDrXQ6W2_HfdN20yt7Bfkrvth9gen7uNDzZ8ng32AVoKow1VjfkpQfY2XLc4AzQlUDQoTKx8b8dE8z1dhSJvqjvQCeZF0/s320/IMG_8557.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcRJq3cGePgvcxwzJn_EZY85iDvA862EjEMRW0XXWZRDpNWnypdI3l_Wud3PT3YbaEhhMeGN0YSLS0DgULZLiRWhJ7oovhzBp6Qy1nfiEnh3yI-6pTQZ2dSLehlO-XenXzFAnbCUvv5uc/s1600/IMG_8575.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcRJq3cGePgvcxwzJn_EZY85iDvA862EjEMRW0XXWZRDpNWnypdI3l_Wud3PT3YbaEhhMeGN0YSLS0DgULZLiRWhJ7oovhzBp6Qy1nfiEnh3yI-6pTQZ2dSLehlO-XenXzFAnbCUvv5uc/s320/IMG_8575.JPG" width="320" /></a></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7371343318933356361.post-87910501450498968262011-02-14T18:57:00.000-07:002011-05-05T19:44:04.031-06:00Love Is in the Air<span style="font-family: "Trebuchet MS", sans-serif;">Happy Valentine's Day from our sweet heart baby and her proud mama!</span><br />
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<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkamVPg6VdsthDySezncEx8wDjWouitJI_GvzkKekuT-IhpAj5DjEe0e-HI1ebS0nG2JvZYcjWamNqrdHls5I2LyVrOjkC91QlH5DFnA6Q4UZF4ZvFaqrUUPD_z3cms1wuIFMb_UdrJyM/s1600/IMG_8549.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkamVPg6VdsthDySezncEx8wDjWouitJI_GvzkKekuT-IhpAj5DjEe0e-HI1ebS0nG2JvZYcjWamNqrdHls5I2LyVrOjkC91QlH5DFnA6Q4UZF4ZvFaqrUUPD_z3cms1wuIFMb_UdrJyM/s320/IMG_8549.JPG" width="320" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRx0X_3czQP7iLmaBJjzYD3w5NxWno17Pwl8yqhYDL6ytEGZ62U1XtWkHOv1bmY6fByCM4scSI8ElWoeHLbaOMUCkTaRDK7SDKUbk9h6xe0y3Xdwp4k7SV7RvMohbFnUglFf93RGuRGwA/s1600/IMG_8566.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRx0X_3czQP7iLmaBJjzYD3w5NxWno17Pwl8yqhYDL6ytEGZ62U1XtWkHOv1bmY6fByCM4scSI8ElWoeHLbaOMUCkTaRDK7SDKUbk9h6xe0y3Xdwp4k7SV7RvMohbFnUglFf93RGuRGwA/s320/IMG_8566.JPG" width="320" /></span></a><span style="font-family: "Trebuchet MS", sans-serif;"></span></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">Let's all pray for good news tomorrow.</span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7371343318933356361.post-74051084917233484052011-02-13T15:25:00.000-07:002011-05-05T19:44:18.798-06:00Our Bright-Eyed Beauty<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNPmy368BqFyrsNQp1BFTUOkgdTeiJTaNhooVFeoMkKS0LFOBI0xZSpX3Km_0-MPTZwPBl8BcmDEsmutSjK8weCRCQFOQQJa_i5_iPDOGEnVor3rP_awqLpZLNziu4pgUm4q2LKuEkHEw/s1600/IMG_8542.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNPmy368BqFyrsNQp1BFTUOkgdTeiJTaNhooVFeoMkKS0LFOBI0xZSpX3Km_0-MPTZwPBl8BcmDEsmutSjK8weCRCQFOQQJa_i5_iPDOGEnVor3rP_awqLpZLNziu4pgUm4q2LKuEkHEw/s320/IMG_8542.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjq1TROQlmOJ-C9Eui4mzUPcaHgG6tYRGYyEsX4yBeIWsiPj9lXLMbNwWJnPqzR2C6a9m4amQNENP63X414J9C7BcJNci0OadEiGcpHnOoHYOqj5yB0PVB18X_ya4X2Zn6B_gyYh84O0Q/s1600/IMG_8536.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjq1TROQlmOJ-C9Eui4mzUPcaHgG6tYRGYyEsX4yBeIWsiPj9lXLMbNwWJnPqzR2C6a9m4amQNENP63X414J9C7BcJNci0OadEiGcpHnOoHYOqj5yB0PVB18X_ya4X2Zn6B_gyYh84O0Q/s320/IMG_8536.JPG" width="213" /></a></div><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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!</span><br />
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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.<br />
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<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEeR8NT5hN4tt_Hdb0ZWvDu8rGcEhbEuuyjv60A2ylTpfjaQE6IgJ1r-RUugUWdiM5aiUW9hi_urwUZOXVlsr5sBj-2Cet_zKJZnPAm7fFIARiC2n8lOxrtaOaBR4XHwLV3Y_DfEtP3eA/s1600/IMG_8534.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEeR8NT5hN4tt_Hdb0ZWvDu8rGcEhbEuuyjv60A2ylTpfjaQE6IgJ1r-RUugUWdiM5aiUW9hi_urwUZOXVlsr5sBj-2Cet_zKJZnPAm7fFIARiC2n8lOxrtaOaBR4XHwLV3Y_DfEtP3eA/s320/IMG_8534.JPG" width="213" /></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7371343318933356361.post-33549215724733067802011-02-13T14:36:00.000-07:002011-05-05T19:44:34.480-06:00Is No News Good News?<div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbz7zUpqoB9CeS1yQnSEy4LIdy3f3BEZegMC9FFsle0f_RnxcyN_I3xfVceU8TUlkP1NgHcUr_s_4QlZeEfld5OCMWTOAdLy5cxfQfdDJE6gHDbigTW4bOZEDf3sWKto3VNkvIbW1_vlc/s1600/IMG_8507.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbz7zUpqoB9CeS1yQnSEy4LIdy3f3BEZegMC9FFsle0f_RnxcyN_I3xfVceU8TUlkP1NgHcUr_s_4QlZeEfld5OCMWTOAdLy5cxfQfdDJE6gHDbigTW4bOZEDf3sWKto3VNkvIbW1_vlc/s320/IMG_8507.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdwDFjgrFTrQppn-SnfoFeMMu29ZY5aZ7NURxjmlM-nYOnaZpLj5AYNgVxnJmnH9CPsTEKoJVku22jTMALXUQrcZJSfwU_-6UUiXKXSNg4x7T1nsz2azHDJ26gC7Prgg5rd2vNGDnQZTY/s1600/IMG_8528.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdwDFjgrFTrQppn-SnfoFeMMu29ZY5aZ7NURxjmlM-nYOnaZpLj5AYNgVxnJmnH9CPsTEKoJVku22jTMALXUQrcZJSfwU_-6UUiXKXSNg4x7T1nsz2azHDJ26gC7Prgg5rd2vNGDnQZTY/s320/IMG_8528.JPG" width="320" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7371343318933356361.post-6749957708884597652011-02-10T21:42:00.000-07:002011-05-05T19:44:51.861-06:00Discharge Postponed<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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).</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Let’s hope Daphne bounces back quickly and is ready for discharge early next week.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3jRreJ_CveqzeuglL5fynM2XHT-DKWkUDbi42ahyphenhyphenHGZ2FA4AofFrITsCjVgxPt4SXGADUDzRLMLWW3ky2m2r8tF9oFhmpjGe0LI5iHxCzFqiBfSvNAgsMC1s4Cq3cVr27t7ACt8ELGME/s1600/IMG_8488.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3jRreJ_CveqzeuglL5fynM2XHT-DKWkUDbi42ahyphenhyphenHGZ2FA4AofFrITsCjVgxPt4SXGADUDzRLMLWW3ky2m2r8tF9oFhmpjGe0LI5iHxCzFqiBfSvNAgsMC1s4Cq3cVr27t7ACt8ELGME/s320/IMG_8488.JPG" width="320" /></a> </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3MXwEpKB4vYLfzMzWAy3c978yYcj7F9jKkO-o_b2-3mBFyLT9r56qjE5_NBDSCURI7BsD-PAaQGZrBofNtQp1RDbdhnDfm6osZ608sIAFOWblUJxnCmaYenNO2q4UV63c8hAWyBhguME/s1600/IMG_8490.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3MXwEpKB4vYLfzMzWAy3c978yYcj7F9jKkO-o_b2-3mBFyLT9r56qjE5_NBDSCURI7BsD-PAaQGZrBofNtQp1RDbdhnDfm6osZ608sIAFOWblUJxnCmaYenNO2q4UV63c8hAWyBhguME/s320/IMG_8490.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9bOajOP6m6jFyHt8D0WSVnTaZHytQQXPKKyj4D1w4cuU34kx-OdS4mRZTrkpHtTRjJXJH-S-miJRIfCbhk4XIiSb9LRMgNZ9t98PZH3DNmD2vLS4SKQHKyvwJBe5o2sMHicQUVEnfpCU/s1600/IMG_8498.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9bOajOP6m6jFyHt8D0WSVnTaZHytQQXPKKyj4D1w4cuU34kx-OdS4mRZTrkpHtTRjJXJH-S-miJRIfCbhk4XIiSb9LRMgNZ9t98PZH3DNmD2vLS4SKQHKyvwJBe5o2sMHicQUVEnfpCU/s320/IMG_8498.JPG" width="213" /></a></div>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-7371343318933356361.post-91215244067883361422011-02-10T08:57:00.000-07:002011-05-05T19:45:04.411-06:00Just How Small Is She?<div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpICrJSbJ1tF2_RL6OrsQ29FovXEsOIhq5jG29zWdqm_aQ7Z6rXghuzrj6PK8VXOx1xnx9THJSGMJSEb2UXeUJZCeaPynLNogrhnkwRaADKNtuzTndln0-UZp9Rq_cvct4TjJfJYCHkHo/s1600/IMG_8369.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpICrJSbJ1tF2_RL6OrsQ29FovXEsOIhq5jG29zWdqm_aQ7Z6rXghuzrj6PK8VXOx1xnx9THJSGMJSEb2UXeUJZCeaPynLNogrhnkwRaADKNtuzTndln0-UZp9Rq_cvct4TjJfJYCHkHo/s320/IMG_8369.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZELhJQK1e9a9FACVwxsdszUHLNq4vHPaxB6ZRhXhkg8SveqJ905JTEtIPaaXt8pC-fWz-hzsbHep28c8XV2FUcjalRE9RsPezZE76pjMhnpVmw2gozp4bIupw7r3hN_kOU4wO2_CymKk/s1600/IMG_8346.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZELhJQK1e9a9FACVwxsdszUHLNq4vHPaxB6ZRhXhkg8SveqJ905JTEtIPaaXt8pC-fWz-hzsbHep28c8XV2FUcjalRE9RsPezZE76pjMhnpVmw2gozp4bIupw7r3hN_kOU4wO2_CymKk/s320/IMG_8346.JPG" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJCZ9EsbKWG9_Z2xUaiv2FegPp5RRieCCPUM6h3zi8hDg8zI0iw7rq74x1HcscV-plCmnKhFlgV7Jua94b8r3up-yWcsRS7nNytX241dgTE0mB4nUTLapBif7i_f-BbQKSS3h-PxEiv-o/s1600/IMG_8368.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJCZ9EsbKWG9_Z2xUaiv2FegPp5RRieCCPUM6h3zi8hDg8zI0iw7rq74x1HcscV-plCmnKhFlgV7Jua94b8r3up-yWcsRS7nNytX241dgTE0mB4nUTLapBif7i_f-BbQKSS3h-PxEiv-o/s320/IMG_8368.JPG" width="213" /></a></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7371343318933356361.post-13506746136632024662011-02-09T12:43:00.000-07:002011-05-05T19:45:19.863-06:00The Road to Recovery<span style="font-family: "Trebuchet MS", sans-serif;">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!</span><br />
<br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiscTFI3aL_5SbCPh-hDT1WUMeA7VA2uF2LW8-5Z4AA0oSPZqAfjd-f-FwYPtgtSXtcr2hU-DzrbaJOUnhzeEWa_kZGxPGESmLdaZ68QLaieg2XykvKurtMMuOtZmDtg2EuX0E2d9IESM0/s1600/IMG_8273.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiscTFI3aL_5SbCPh-hDT1WUMeA7VA2uF2LW8-5Z4AA0oSPZqAfjd-f-FwYPtgtSXtcr2hU-DzrbaJOUnhzeEWa_kZGxPGESmLdaZ68QLaieg2XykvKurtMMuOtZmDtg2EuX0E2d9IESM0/s320/IMG_8273.JPG" width="320" /></span></a><span style="font-family: "Trebuchet MS", sans-serif;"></span></div><div style="text-align: center;"><br />
</div><div style="text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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:</span></div><div style="text-align: left;"><br />
</div><div style="text-align: left;"><strong><span style="font-family: "Trebuchet MS", sans-serif;">Recovery Timeline</span></strong></div><span style="font-family: "Trebuchet MS", sans-serif;"><strong>Thu 2/3:</strong> Surgery completed, sedated over night, given pain medicine and Heparin to thin blood</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><strong>Fri 2/4:</strong> Pain medicine stopped, Heparin replaced with baby Asprin, nasal tube removed, taken off ventilator and given supplemental oxygen, taking a bottle every three hours</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><strong>Sat 2/5:</strong> 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</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><strong>Sun 2/6:</strong> Neck IV removed, swelling completely gone, weight: 4 lb. 7 oz.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><strong>Mon 2/7:</strong> Warming bed turned off</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><strong>Tue 2/8:</strong> Supplemental oxygen removed, last Lasix treatment received, eating well, weight: 4 lb. 10 oz.</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"><strong>Wed 2/9:</strong> Hearing screening passed, eating 40-60 ml per feeding, weight: 4 lb. 8 oz., discharge scheduled for 2/11</span><br />
<span style="font-family: Trebuchet MS;"><strong>Thu 2/10:</strong> PICC line removed</span><br />
<br />
<div style="text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7371343318933356361.post-47168573476278722552011-02-08T13:13:00.000-07:002011-05-05T19:45:37.204-06:00Family Reunion in AL<div style="text-align: center;"><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;"><br />
</span></div><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;"><br />
</span></div><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;"><br />
</span></div><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;"><br />
</span></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimwFi9eM-j335j5uWBS1veSSAupOdzfTfDkxFp1dlI_OMAcXLfRbMOpBLDLRPJNJNDQbMriLbF-eKwMlPGHK4WeN2CX5v4Md_he5T-FH2XGVmEYr7_lC9Y4ketOicscqNmtfBWm1X7pk8/s1600/IMG_8284.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimwFi9eM-j335j5uWBS1veSSAupOdzfTfDkxFp1dlI_OMAcXLfRbMOpBLDLRPJNJNDQbMriLbF-eKwMlPGHK4WeN2CX5v4Md_he5T-FH2XGVmEYr7_lC9Y4ketOicscqNmtfBWm1X7pk8/s320/IMG_8284.JPG" width="320" /></span></a></div><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;"><br />
</span></div><div align="left"><span style="font-family: "Trebuchet MS", sans-serif;">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. </span><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><span style="font-family: "Trebuchet MS", sans-serif;"></span><br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3ebn47ybGb2t8I8cK8qmCSr72dgj1U0hgKnBdvZQCp8NDygw6Kg90ukg3lgsxLWhcfw7pURq28fw18noP76gTR-yU1h5wrlO37MQr4JAPcIqlyj-b1vJdUbPPS4UgyY3Ib8zDCfVJOos/s1600/IMG_8280.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3ebn47ybGb2t8I8cK8qmCSr72dgj1U0hgKnBdvZQCp8NDygw6Kg90ukg3lgsxLWhcfw7pURq28fw18noP76gTR-yU1h5wrlO37MQr4JAPcIqlyj-b1vJdUbPPS4UgyY3Ib8zDCfVJOos/s320/IMG_8280.JPG" width="320" /></span></a> </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDd-Gc8Paya2Gc8yL-qWEtsm8c23trLPWHmVpyAwcBPen4MmTPi6rdn0DqEm9z3JtodCs7VP3iKXkio9e7qYuN3_rS2oWbl2TtJYiurm05WZwceM8gHBxVcjuppcz_4Ym0Hi5XuhxMIOo/s1600/IMG_8290.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDd-Gc8Paya2Gc8yL-qWEtsm8c23trLPWHmVpyAwcBPen4MmTPi6rdn0DqEm9z3JtodCs7VP3iKXkio9e7qYuN3_rS2oWbl2TtJYiurm05WZwceM8gHBxVcjuppcz_4Ym0Hi5XuhxMIOo/s320/IMG_8290.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlYqt-8Ihev_A-Ezx_rEfo4ayArvCK2jFzs1jgq_mdVEt8zzowST2-c7I2LoDDr_6ccgDvpSTjtg7l7q69oihTXT3A8zNsOXYQJbaO6GRQCp0x4NUSQkw_N7e_X0PYPbVbMhqKAER8seI/s1600/IMG_8311.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlYqt-8Ihev_A-Ezx_rEfo4ayArvCK2jFzs1jgq_mdVEt8zzowST2-c7I2LoDDr_6ccgDvpSTjtg7l7q69oihTXT3A8zNsOXYQJbaO6GRQCp0x4NUSQkw_N7e_X0PYPbVbMhqKAER8seI/s320/IMG_8311.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8LKWImpOaEyGMoKOjZRI8T66t-A4r6_UGfh8q45GrrNGXeX7nc6NJccdpo3eyb6fPauYmtaOQvSNeO7rppxkm1ZNgWKg1hKs2ooXuWWfD7tSavwAMFYaetmrDPSWkyp6n26R2MQKFAQg/s1600/IMG_8304.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8LKWImpOaEyGMoKOjZRI8T66t-A4r6_UGfh8q45GrrNGXeX7nc6NJccdpo3eyb6fPauYmtaOQvSNeO7rppxkm1ZNgWKg1hKs2ooXuWWfD7tSavwAMFYaetmrDPSWkyp6n26R2MQKFAQg/s320/IMG_8304.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div></div><span style="font-family: "Trebuchet MS", sans-serif;"></span><br />
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</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div class="separator" style="clear: both; text-align: left;"><br />
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</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div><div class="separator" style="clear: both; text-align: left;"><br />
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</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: "Trebuchet MS", sans-serif;">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.</span></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7371343318933356361.post-41952657005449824822011-02-07T17:08:00.000-07:002011-05-05T19:45:51.873-06:00The Agony of Waiting<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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?</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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!</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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).</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">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.</span>Unknownnoreply@blogger.com2