Monday, February 28, 2011

Marked with Love

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

Sunday, February 27, 2011

Notes from Little Friends

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

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

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

Thanks, girls!

Saturday, February 26, 2011

Back in the Hospital

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, February 25, 2011

How to Be a Great Big Sister

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

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

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

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

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

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

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

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

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

Sweet Home AL to Home Sweet Home

After Daphne was discharged from the hospital, we moved into a hotel while we waited for Alabama and Utah to review our adoption paperwork and give us permission to cross state lines (this approval process is called ICPC). Hoping to expedite things, we submitted everything except Daphne's discharge summary to Alabama as soon as I got into town. Unfortunately, Alabama couldn’t approve anything without the discharge summary, and we couldn’t get that until the morning of discharge—a frustrating conundrum.

While Daphne was in the hospital, our lawyer tried to encourage Alabama’s ICPC coordinator to take a look at our other paperwork and let us know if anything else was missing, but she resisted. We’d been told that her review could take up to two weeks, so we felt frustrated by her attitude. I didn’t know her reasons for waiting, but I assumed that, in her line of work, everyone wanted to be treated like an exception, making her very reluctant to make one. But I kept thinking, if ever there were a time to make an exception, surly it would be for a baby who just had heart surgery.

When Daphne was finally discharged on Wednesday, February 16, we faxed the discharge summary and a medical letter requesting expedited approval to the ICPC coordinator. Will believed we would receive ICPC approval before the weekend, but I wasn’t as optimistic. I thought we would be in Alabama at least another week. In the end, Will was right. I received a phone call from our lawyer at 8:30 a.m. on Friday, February 18, saying that Alabama had sent approved paperwork to Utah and Utah had given verbal approval for us to come home. My heart started racing and my stomach tightened with excitement. I felt giddy, anxious, shocked, and delighted.

I pulled out my computer and began searching for flights out of Birmingham—nothing until Sunday morning. That seemed like an unbearably long time to wait. I called Will to report the disappointing news, and he suggested searching for a flight out of Atlanta, just 2.5 hours away. I searched through Expedia and found a Saturday morning flight with just two seats left—clearly another gift from heaven. I booked it without a plan for getting to Atlanta.

While my mom arranged for a rental car, I got Daphne ready for the day and began packing. By noon, we had checked out of the hotel and were on our way into town. Before heading to Atlanta, we had to return an oxygen tank to the medical supply company, pick up a revised medical letter for the new airline, pick up a rental car, and return the car I had borrowed from a local Church member. The errands seemed to take forever, but by 3:00 p.m., we were on the road to Atlanta.

The drive to Atlanta was smooth and uneventful. My mom and I drove straight to the airport and checked into a nearby hotel. When I woke in the morning, my stomach was tied in knots, and it stayed that way until I reunited with my family in Salt Lake City.

We arrived at the airport at 5:30 a.m., beating the rush. Getting through security with oxygen was much simpler than I expected. The Atlanta TSA agents were very kind, careful, and efficient. During our first flight (Atlanta to Phoenix), my mom and I had an entire row to ourselves, making it easy to care for Daphne in flight. She slept soundly during the flight and maintained stable oxygen levels. The medical supply company that provided the portable oxygen concentrator also gave me two rechargeable batteries that should have lasted 4.5 hours each, but halfway through our 4-hour flight, the first battery died. The second one seemed to be holding its charge better, until it started beeping during landing. When we arrived at the airport terminal, we had just 30 minutes before our next flight began boarding. I plugged in the oxygen concentrator and let it charge until the flight attendants forced me to board.

Our second flight was supposed to be less than 2 hours, so I felt confident that we’d have enough battery life to last through the flight. Before takeoff, several flights were redirected, and we ended up sitting on the tarmac for an extra 30 minutes. With just 45 minutes left in the flight, the battery began beeping again. I panicked. My mom called the flight attendant. I started to cry, not because the battery was failing (I was sure we could figure that out) but because I felt like a bad mother and I didn’t want to cause trouble for other people.

The flight attendants were very kind, assuring me this wasn’t the worst in-flight emergency they’d faced. They took me to the back of the plane, where I sat on the jump seat and plugged the oxygen concentrator into the plane’s power. I stayed there until it was time to land; then I went back to a regular seat. After landing, I returned to the jump seat while everyone else deplaned; my mom and I exited last.

We rushed to the baggage claim, where Will and Shelby were waiting to greet us. When I saw them, the knots in my stomach disappeared and I felt relieved—relieved to be safely on the ground, relieved to have my eternal companion within arm’s reach, relived to have both of my girls in one state, relived to be home at last.

Thursday, February 17, 2011

Phase One Complete

It’s official: Daphne has been discharged from the hospital, and we’ve moved into a hotel, where we’ll spend the duration of our time in Birmingham.

Getting to this point hasn’t been easy. From a medical standpoint, Daphne has done remarkably well, experiencing a swift and uneventful recovery. But the logistics of getting her out of the hospital and home to Utah have been complicated and time consuming to arrange.

First, we had to make arrangements for follow-up care. When Daphne gets home, she’ll need a pediatrician and a cardiologist. Since UAB wanted to fax Daphne’s medical records to her Utah doctors, I contacted our pediatrician to have her added as a patient, and the medical team focused on finding her a cardiologist. Initially, they scheduled an appointment with one doctor, but then Daphne’s Alabama cardiologist, Dr. Carlo, made a special request to a former colleague with a closed practice and asked her to accept one more patient. Scheduling an appointment was a joke, since Daphne needs to get in as soon as possible but we have no idea when we’ll be home. Try explaining that over the phone without driving the receptionist crazy!

Next, we had to arrange for Daphne to have portable oxygen for the flight home. This was a two-part project. First, the nurse practitioner had to prepare a letter for the airline, explaining the need for the oxygen and describing the equipment. When I schedule my flight, I’ll have to let the airline know that I’ll be traveling with oxygen, and I’ll have to arrive extra early so that they can examine the equipment.

Second, we had to convince a medical supply company here in Birmingham to let me take very expensive equipment across state lines. This was by far the most challenging obstacle to Daphne’s release. It took our Alabama social worker, Suzanne, two weeks to make the arrangements. As you can imagine, no company was anxious to accept the risk of working with an out-of-state stranger or providing for a pediatric patient outside its area. Once Suzanne found a medical supply company willing to accommodate our strange situation, it took countless, lengthy phone conversations to resolve their lingering reservations. At first, the company was confused about whether the oxygen was necessary; then they were concerned about getting the equipment back. They were compassionate people who wanted to help, but they also needed to limit the company’s risk. Ultimately, I had to pay a rental fee, agree to ship the equipment back, and sign a promissory note agreeing to pay for the equipment if I didn’t return it. Once everyone agreed to these terms, we began preparing to leave the hospital.

We had hoped to be discharged early Wednesday morning, but we had to wait for Daphne’s portable oxygen to be delivered. At 4:30 p.m., a representative from the medical supply company arrived, pushing a cart weighed down with two different oxygen tanks, two chargers, an extra battery pack, a humidifier, extra tubing, and a pulse oximeter. There was so much stuff! I was caught completely off guard. Suddenly, I realized that leaving the hospital wouldn’t make Daphne any more portable. She had been shedding IVs and monitors since surgery, giving me time to imagine life without tethers. So even though I knew she would be leaving the hospital on oxygen, I didn’t think about how bulky and breakable the equipment would be. When the oxygen representative arrived, I caught a glimpse of my new life with two girls, and I realized, for the first time, that even moving from one room to another would be challenging. I shouldn’t have been surprised by this vision, but I was.

After the oxygen orientation, it was time to pack up and leave. I thought I would feel elated when this moment arrived, but in the final minutes, I found myself fighting back tears. I wasn’t sad to be leaving friends behind—I had said my goodbyes—but I did feel alone. For the last two and a half weeks, Daphne and I had been cared for by an incredible team of doctors, nurse practitioners, nurses, and social workers. These people had been Daphne’s advocates and my teachers. But that night, for the first time since arriving at UAB, I felt like Daphne and I were being cared for by strangers who weren’t personally invested in our journey. They were still kind and competent, but we didn’t share that deeper bond that comes from fighting the same battle.

After a few moments, the sadness passed, and I was ready to leave. In Alabama, you can leave the hospital in one of two ways: (1) holding the baby while sitting in a wheelchair or (2) rolling the baby out in her crib. Since I didn’t give birth to Daphne, it didn’t seem appropriate for me to sit in a wheelchair. So we buckled her into her car seat and put the car seat in the crib (I wanted to make sure she would fit and the oxygen tube wouldn’t get tangled). My mom went to get the car, while Daphne and I were escorted to the loading zone.

Now that we’re settled in our hotel, I feel more at ease. Although the hospital staff did a fantastic job of including me in Daphne’s recovery, allowing me to care for her with relatively little supervision, it is still relieving to be on my own (well, with my mom), away from the watchful eyes of so many helpful nurses. I no longer have to report every dirty diaper or wait for someone else to deliver Daphne’s next meal. I finally feel like a full-time mom.

Our first night in the hotel went pretty well. Daphne’s pulse oximeter keeps track of her heart rate and oxygen levels, but it doesn’t have an alarm, so we have to keep a close eye on the numbers to make sure she stays in range. I dozed with the pulse oximeter in view so that I could check Daphne’s stats throughout the night. She slept fairly well, although she was a little restless from about 1:00 to 3:30 a.m. She’s not much of a crier (unless she’s being poked with a thermometer), but she does grunt and wiggle when she’s uncomfortable.

What’s next? Well, now we wait some more. Since we can’t take Daphne out in public, we’ll be hanging out in our hotel room until we receive word that the legal paperwork has cleared. Then we’ll hop on the first flight to Utah and pray the snow doesn’t prevent us from getting home.

Tuesday, February 15, 2011

An End in Sight

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!

Monday, February 14, 2011

Love Is in the Air

Happy Valentine's Day from our sweet heart baby and her proud mama!

This weekend was all about monitoring and mapping Daphne’s natural oxygen range. The doctors want to see it consistently above 75 percent, but Daphne’s body seems to spend more time between 70 and 80 percent. This range isn’t ideal, but it isn’t necessarily concerning. This lower range is most likely a result of her small subclavian artery and should improve as she grows.

To determine if this range is acceptable or problematic for Daphne, the doctors ordered another echocardiogram today. We’ll hear the results tomorrow. I think the doctors are hoping to avoid a heart catheterization, since it would mean a minor procedure involving sedation and a ventilator. If things look good on the echo, I think Daphne will be discharged in a couple of days. If there’s still uncertainty about the blood flow to her lungs, they will go ahead with the heart catheterization.

Because there’s less oxygen at higher altitudes, Daphne will need supplemental oxygen for the flight home and, most likely, after we land until she adjusts from Alabama’s to Utah’s altitude. Since Daphne will need this little oxygen boost after discharge anyway, the doctors have decided to put her on it now so that they can get her levels figured out before she leaves the hospital. They will aim to maintain her levels between 75 and 85 percent, just above her natural range. Before discharge, they’ll teach me how to read the pulse oximeter and make necessary adjustments.

Let's all pray for good news tomorrow.

Sunday, February 13, 2011

Our Bright-Eyed Beauty

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

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

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

Is No News Good News?

When Daphne's oxygen levels dropped on Thursday, Dr. Toms put her back on Lasix to see if that would help. At first, it seemed to make a difference, because her oxygen levels picked up for a while. But eventually, her levels dropped again, and it became clear that the lift was just part of a random cycle of rising and falling stats.

At this point, the doctors are vigilant but not panicked. Because Daphne still looks good and doesn’t seem to be in distress, the neonatologist and cardiologist on duty have decided to hold off putting her back on oxygen. Tomorrow Daphne’s regular team will evaluate her stats from the weekend and decide if she needs a heart catheterization. Since she hasn’t shown any progress, I’m assuming that will be the next step.

So why the low oxygen levels? There are several theories, but they all revolve around reduced blood flow to the lungs: (1) There could be a clot in the BT shunt. (2) The ductus arteriosus could have taken part of the pulmonary artery with it when it disappeared, causing narrowing and reduced blood flow. (3) Or, the leading theory, Daphne’s extremely narrow subclavian artery may not be pushing enough blood through the BT shut. Let’s hope we learn more in the coming days.

Thursday, February 10, 2011

Discharge Postponed

Apparently, Daphne isn't ready to say goodbye to all the nice doctors and nurses who have been taking such good care of her. Last night, her oxygen levels began to dip, and they've spent a fair amount of time below her lower threshold throughout today. The doctors and nurse practitioners agree that she isn't ready to be discharged tomorrow; they're going to observe her over the weekend and then decide what to do.

I’m pretty disappointed and discouraged by this unexpected turn of events, although I fully support the medical team’s decision. Daphne seemed to be doing so well, but evidently, something isn’t quite right. The worst part is that there’s nothing I can do to help her improve her stats. I just listen to the monitor ding, over and over, and watch the numbers fall. Then they rise for a little while, before it starts all over again. She still looks great and is breathing steadily; but something has changed, and no one knows what. 

This morning, the doctors did an x-ray to check for fluid on the lungs and an echocardiogram to check blood flow to the lungs. Based on what they could see, things looked good. Tonight the neonatologist, Dr. Toms, suggested we put Daphne back on Lasix to see if that would help dry out her lungs even further (that’s a good thing). She was taken off Lasix two days ago, so that could be the variable affecting her recovery. If Daphne’s stats stay low after we put her back on Lasix, we’ll have to move on to a heart catheterization to explore the blood flow in more detail.

I was really looking forward to being discharged, because we can’t submit the final paperwork for ICPC until we have hospital discharge papers. But if Daphne had to take a step back in her recovery, I’m glad it happened before discharge, while she was still hooked to her monitors. This experience has made me more concerned for the future. Even though her stats are low, she looks good. After discharge, how will I know if her oxygen saturations are low? How will I know if she’s struggling? I wasn’t worried before, but I am now.

Today was a tough and lonely day. Watching my baby struggle was hard and frustrating. I miss my family, and I wish we could all be together. My mom will be joining me in Alabama on Saturday, and I look forward to seeing her. It will be nice to have someone to talk to face to face (although I have appreciated all the phone calls, e-mails, and comments from friends and family).

Let’s hope Daphne bounces back quickly and is ready for discharge early next week.


Just How Small Is She?

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.

Wednesday, February 9, 2011

The Road to Recovery

Each day, I am reminded that our family is in the hands of the Lord and that He has power to work miracles in our day. He began watching over and blessing Daphne long before birth, and He has continued to bless her through her surgery and recovery. I am amazed at how well she has done post surgery. She is making a speedy recovery and looks better every day. The doctors have been so impressed with her progress that they are planning to discharge her this Friday, February 11. It looks like our heart baby will be out of the hospital before Valentine's Day!

Daphne's recovery has been swift, but she's had to overcome a lot of hurdles in the last week. Here's a quick summary of her medical journey:

Recovery Timeline
Thu 2/3: Surgery completed, sedated over night, given pain medicine and Heparin to thin blood
Fri 2/4: Pain medicine stopped, Heparin replaced with baby Asprin, nasal tube removed, taken off ventilator and given supplemental oxygen, taking a bottle every three hours
Sat 2/5: Central line and right arm IV removed, transfered from CICU to RNICU, weight: 5 lb. 7 oz., given Lasix to expell excess fluid, placed in a warming bed to regulate temperature
Sun 2/6: Neck IV removed, swelling completely gone, weight: 4 lb. 7 oz.
Mon 2/7: Warming bed turned off
Tue 2/8: Supplemental oxygen removed, last Lasix treatment received, eating well, weight: 4 lb. 10 oz.
Wed 2/9: Hearing screening passed, eating 40-60 ml per feeding, weight: 4 lb. 8 oz., discharge scheduled for 2/11
Thu 2/10: PICC line removed

Sadly, we won't be able to travel home right away. We still have to wait for ICPC to clear, which could take days or weeks. (ICPC is basically adoption paperwork that has to pass between Alabama and Utah.) We're hopeful that everything will work out and that we'll be able to return home next week.

Tuesday, February 8, 2011

Family Reunion in AL

Will, Shelby, and my mother-in-law, Judy, arrived in Birmingham on Friday afternoon and stayed through Monday evening. Seeing them again, especially after such a difficult week, was just what I needed to help me relax and refresh.

When they arrived, Daphne was still in the CICU, where patients were housed in an open room and separated by curtains. Daphne had been extubated (taken off the ventilator) and placed on supplemental oxygen, but she was still hooked up to the other post-op IVs and monitors.

Initially, I didn’t plan to take Shelby into the CICU, because I worried that seeing Daphne like that would frighten her. But when she asked to see Daphne, I realized that keeping them apart would only confuse her. She needed to bond with her sister and see for herself what was keeping me away. Before taking Shelby into the unit, I sat her down and explained that Daphne had a problem with her heart and that the doctors were trying to fix it. I told her that Daphne would be covered in band aides to help her feel better. Shelby seemed to accept this simple explanation.

We approached Daphne’s bed as a family, Will at my side and Judy holding Shelby. Daphne was wrapped in multiple blankets, which concealed the IVs and cords, and she was sitting in a baby bouncer on top of her bed. The pacifier in her mouth hid the oxygen tube in her nose. She almost looked like a healthy newborn.

Will took Daphne’s tiny hand in his and spoke to her in a soothing voice; then he introduced Shelby to her sister. We encouraged Shelby to hold Daphne’s hand, touch her hair, and talk to her. She didn’t hesitate at all and was very gentle. During our visit, Will helped Shelby feed Daphne, and we all took turns snuggling her. When Shelby got restless, Judy took her to the waiting room, giving Will and me a few minutes alone with our new daughter. Seeing Will hold Daphne for the first time was incredible, because I could see the love and devotion in his eyes. On the drive back to our hotel, I praised Shelby for being such a good big sister and for being so gentle and helpful. With sincerity in her eyes, she proudly responded, “I didn’t hit her, Mom.” I have to agree, that’s a good start.


On Saturday morning, Daphne was strong enough to be transferred back to the NICU, which meant a personal room and no visiting restrictions. We spent the day at the hospital, taking turns holding her. Shelby showed sporadic interest in Daphne, but for the most part, she just wanted to play. Judy was a lifesaver; she did a fantastic job of keeping Shelby happy by taking her to the children’s playroom or on walks to explore the hospital. Shelby was fascinated by the statues of children sitting on benches that she found in one hallway.


On Saturday and Sunday, we spent time with Uncle Dan and Aunt Nora, who made the 4-hour drive from Tennessee to see us for less than 24 hours. We haven’t seen them since Randy’s funeral, so they got to meet both Shelby and Daphne for the first time. Dan and Nora are so friendly and thoughtful. It was wonderful to see them and to feel their love and support.

Over the last two weeks, Shelby’s world has been turned upside down and reinvented. She’s been a real trooper, but the changes have been hard on her. During our little family reunion, we wanted to spend time away from Daphne and do something just for Shelby. So on Monday morning, we took her to the McWane Science Center, a children’s museum featuring fun gadgets, hands-on science experiments, an indoor playhouse, a mid-size aquarium, and a dinosaur display. Shelby loved having the freedom to run and play; it was a little like being at home, where I take her on outings every week. The science center was fun for everyone; in fact, I think Will had even more fun than Shelby.

After the museum, we stopped back at the hospital so that Will, Shelby, and Judy could kiss Daphne goodbye; then I drove them to the airport to catch their flight. It was a short visit but just what I needed to make it through the next week or so. I can’t wait for all of us to be together at home.