That’s a wrap on expanders round #1!

TOMORROW ELIZA HAS HER LAST FILL ON HER FIRST SET OF EXPANDERS.

We are so excited to be done with fills. Tomorrow we travel to her doctor in Nashville again for her final fill (the side bubble has 400ml’s of fluids and the back bubble has 250ml’s of fluids) and pre-operative appointment for her next surgery. Her next surgery is schedule for Wednesday, April 18th at 11:00 AM. During this surgery she will have her expanders removed and some of her nevus skin replaced with the newly grown skin. We are grateful that it is time to get started with this phase of the process. But it’s also a big change. Her thick, dark hair with those tight curls will be gone :(. And it will be so sad. It’s how we have always seen her and it’s crazy to think that part of that will be removed. In a strange way, we will miss that. But we know it’s the best thing for her.

One of the things that Alisa and I had resolved to do during this part of her treatment was to continue on with life as normal, even when Eliza’s bubbles were huge and couldn’t be ignored. We got used to strange looks, but we also had some great conversations with strangers thanks to her bubbles. It really changed my perspective on how I handle myself around any situation where something is different. We truly appreciated the people who were willing to ask questions and seemed interested. We didn’t appreciate when people would stare and point it out to others and then they would stare. But, at the end of the day, none of that mattered because we know it was the right choice for Eliza and she was NEVER bothered by any of it. Her resilience has truly carried the day in all of this. She is so joyful and so happy, even when her bubble has made her a little off balance…haha. In fact, one of her favorite things to do these days is to point to her bubble and bump your head with it. That level of joy and trust is something we should all strive towards.

Below are some of our recent adventures with Eliza!

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Snack break at the playground
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Look at that curl!
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She doesn’t go anywhere without baby these days!
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“I can push it too, Dad!”
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Mommy’s turn at the doctor.
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She LOVED the zoo!

We will try to post updates about her surgery as we can. We appreciate your prayers and support.

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We have bubbles!

It’s been a while since our last post, but Eliza had her first surgery to insert expanders. And we have since been at home and growing new skin and bubbles!

We were incredibly blessed to have some of Alisa’s family offer to let us stay in their condo in Nashville that was literally right down the street from the hospital. So that was home base for the weekend. And it was a huge blessing to be able to feel comfortable in a place and have a place to relax after the surgery. IMG_0613The other incredible blessing about this trip is that my dad was able to come down for the surgery. And that was no small feat. Eliza’s surgery date this time happened to be during one of the coldest snaps of the winter on the east coast and we actually had snow in Tennessee. So, of course, dad’s flight through Atlanta got cancelled. But he was able to re-route through Detroit and arrived in Nashville at midnight the night before surgery. While he was flying in, Alisa, Eliza, and I went and found some good food near our condo. And, like any good Nashville faire, the meal included live music.

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Playing with Buck in the waiting room at Vanderbilt.

On the morning of surgery, we were scheduled to arrive at Vanderbilt at 11:00 AM. However, around 8:40 I got a call from Dr. Chester saying that our surgery time had been bumped up and she asked if we could arrive at 9:00 AM instead. Sure. That just meant less time that Eliza had to go without eating. When we arrived at Vanderbilt, the check-in process started immediately. We met nurses, residents, more nurses, anesthesiologists, more residents, the list goes on. It’s such a big teaching hospital that you meet a bunch of different individuals throughout your time. Soon, however, Dr. Chester came around the corner to talk to us. It was nice to see a familiar face. She walked us through surgery that day and shortly after Eliza was wheeled back.

Eliza has developed quite an affinity for the little cars that she can get pushed around in. She loved the one at her previous surgery and loved the one we used at Vanderbilt as well. While we were back in pre-op, the nurses were nice enough to let us push her around all throughout the hospital. As we would pass people, Eliza would stick her hand out and wave and say “Hiiiiiiiiiiii” as only she can. Needless to say, she was a hit.IMG_0625

And that car served a great purpose as well. As the anesthesia team was taking her back for surgery, they pushed her in her car and she didn’t even realize she was leaving us. Easy for her. But it never gets easier for the parents I don’t think.

Eliza’s surgery took a total of about 3 hours. So while we waited, we grabbed some food at a local place and tried to relax. Much easier said than done. At the end of surgery, Dr. Chester met us in a consultation room and let us know that everything had gone wonderfully. Both expanders were put in and ready to be filled in a couple of weeks.

We were then called back to recovery. When we turned the corner, there was a little baby girl in a sweet nurses’s arm with her head totally covered and face pretty swollen. She was comfortably sipping on some Pedialyte. But as soon as she saw us, she started to cry and call out for “Dadadada, Mamamama.”

We snuggled and hugged her for quite a while. Since she didn’t have any premedication prior to surgery this time, her recovery seemed a bit easier. We were with her in recovery for about 45 minutes and then discharged to go back to the condo for the night. We met my dad in the waiting room and headed out. Eliza spent most of the afternoon sleeping and resting.

Later that evening, we were able to meet up with extended family for some food and Eliza slept/rested through that meal too. But it was a lot of fun to get to see cousins and aunts and uncles during our trip. We look forward to more post-surgery meals with them as well. After dinner, we headed back to the condo and settled in for the night. Eliza slept well that night. Her doctor had given us some pain medications to pick up and those seemed to work well for her. She was a bit more grumpy than her usual self, but did not act like she in a lot of pain. The next morning we packed up the condo and headed home.

Overall, surgery was a breeze. Eliza handled it like a champion and came out the other side smiling, even with the black eye she developed the morning after. When we took her surgery hat off, Eliza’s hair was quite a mess, but nothing a little sponge bath and shampoo couldn’t detangle.

We have since started to fill her expanders with saline. She is now growing two precious little bubbles on her head and her skins appears to be expanding well. We are making sure that we document this part of the journey really well, because it’s unique and funny and downright weird. So we definitely don’t want to forget any of these stages.

Thank you all for your prayers, calls, texts, letters, etc. They mean the world. we truly feel like we have been carried during stressful and sometimes difficult times. We are blessed to share this journey with you.

Surgery Prep Appointment

Let’s start with a picture, shall we? Because those are much more fun than words…

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(shoutout to Great Grandma Rodgers for my comfy doggy blanket in this photo)

This past week, the Chattanooga Singers made the trip back to Nashville to visit Dr. Chester! This was our “pre-surgery planning” visit. Eliza was measured for expanders, and, fortunately, we were able to ask Dr. Chester about 1,500 questions. And as always, she was a patient saint and never made us feel silly for all of the questions. The first surgery date is set for January 17th.
The plan for Eliza’s first surgery follows. Two expanders (“balloons”) will be placed under her skin, one on the top of her head and one on the back.  At the same time, some of the larger spots on her legs and back will be removed as well. The surgery itself is supposed to take around 2 to 3 hours. Eliza will recover in the hospital and, hopefully, be discharged the same day.
She will have a pretty intense head bandage on for a couple of weeks to make sure the incision sites heal well. The expanders will then be injected with fluid over the course of a couple of months to cause the skin to stretch. (Don’t worry; there will be many pictures taken during this time to document the craziness.) The newly stretched skin will be monitored and Dr. Chester will make the call on when we are ready to proceed with the next surgery to remove the expanders as well as part of the nevus.
As much as surgery is science and medical, it is also an art form. Dr. Chester knows what she wants to do, but so much depends on how Eliza’s skin responds. She has the vision but will have to see how Eliza’s skin reacts to the procedures. And we have to trust the artist. In a way, it’s a bit of a microcosm of our story with Eliza. Just as Dr. Chester knows WAY more about surgery than we do, the Lord knows WAY more about Eliza than we do. And He has given us a vision for what to do even though we may not know all the steps right now. And that’s okay. Sometimes you don’t have all the answers. And sometimes, all you can do is be faithful to the next step.
Our next steps are to invest intentionally in our next playtime with our daughter. To teach her, as best we can, about the loving kindness of the Lord. To trust that the artist’s hands are more capable and more accomplished than anything our feeble hands could muster. And we trust the Artist.
So until January 17th, we are also going to enjoy our daughter’s full head of dark hair (at least on one side) because it won’t be around forever. And we are going to sit quietly by the Christmas tree and celebrate. Celebrate that the same Artist who is painting Eliza’s story painted the most beautiful story ever told through another innocent baby. Merry Christmas, friends!

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Love, The Singers

IMG_5237I can romanticize most things in life. I smile when I think about the hours I spent waiting by the phone in high school. I wonder if people who cared about me in the past would bother making the trek to my funeral. I could go on, but I think you get the idea. (That I’m weird.)

Here at the Singer house, we have been waiting. Waiting for a call that would tell us if we needed to prepare to bury our baby. One thing that is hard for me to romanticize is the death of our one-year-old daughter.

Worry

I am now convinced that there is a “waiting state of mind.” It says, “If I have to wait, then the other things in my life can wait too.” A mind that is rattled with the possibilities held in an answer cannot be encumbered by meal planning, scheduling, and picking out paint colors. It almost seems wrong.

When the call finally came, I heard the words, “Dr. Chester wanted me to call you as soon as she heard. We don’t have the pathology details yet, but we do know that it’s not cancer.”

Dear Cancer: Not today.

My mind was immediately set free!! Free to wonder, dream and enjoy. Free to play, plan and work hard! Normal life and thought processes could commence. Strangely though, the news also felt slightly ordinary, as if my worry and anxiety were powerless to change God’s plan for Eliza…

As if Eliza were never ours to worry about…

My lack of control over the situation did not lessen my relief or dampen my joy at the hearing of her health, but it did make me think. The phone call could just as easily given me news of Eliza’s aggressive melanoma. And although tragedy is averted for now, tragic news could surprise us at any time.

Truth and Reality

Worry can be triggered by a million situations, and we don’t often think of it as a choice because it is so natural in all of us. We don’t worry because we think it will change our situation. We worry because we are human. Sometimes we fool ourselves into thinking we have even a smidgen of control, but when tragedy strikes, the reality of our powerlessness is fierce.

So I am going to try to think of worry as a choice. When I start to worry about Eliza and her future, or about life in general, I am instead going to try to remember (reality check) to remind myself of truth. And truth tells me these things:

Jesus is who He says He is.

He will do what He says He will do.

He will be who He’s always been to me.

My hope is in Jesus alone.

My strength is in His mighty name.

And my peace in the darkest day remains Jesus.

He is our God through the wilderness.

He is our joy in the heaviness.

He is our way when it seems there is no way.

This I KNOW- we will see the enemy run.

This I KNOW- we will see the victory won.

His ways are higher than our own.

Jesus is unfailing.

Those words are paraphrased from a song we have been singing in church called “This I Know” and those words have pierced my heart recently. Jesus, you are unfailing. Even if Eliza had or will one day have cancer.

How can I not trust??

I can get all spiritual and philosophical here, but the bottom line for my heart (which is still very human) today, looks something like this:

 

Hey Cancer,

Not today.

Love,

The SingersIMG_5343

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Happy 1st Birthday, Eliza Jane.

“I’m so good at surgery,” ~Eliza

If you’re going to have a lot of surgeries in life, you may as well be good at it. I think that’s what Eliza said last Wednesday. Haha That sounds funny, I know, but for being a somewhat sudden and intimidating surgery, the whole experience turned out to be rather a fun adventure!

As usual, the Lord made things easy. The day before Eliza’s surgery in Nashville, my parents were scheduled to fly back home to Wyoming from- you guessed it- Nashville. They probably were just booking the best deal at the time, but the Lord knew that driving to the airport in Atlanta then turning around and driving to Nashville would make for one long day. So after dropping them off, a call to the hotel got us both an immediate check in and an upgrade! (Yes, I still get excited about upgrades.) UPGRADE!

Eliza was able to have normal nap times and the two of us had fun exploring Centennial Park! Eliza had herself a little swing, which appeared to be the highlight of her short life. Then we got smoothies!! It was a beautiful day and we had the best time.

IMG_1093After work, Josh caught a shuttle to Nashville and we all had a delicious last supper down the road about 27 steps at Newk’s. Shout out to Homewood Suites Vanderbilt for their stellar location.

Since E had a 6am call at the hospital, she could have her last sip of water anytime before 4am, and being the newbies that we are, we decided to wake her at 3:15 for a sip of water. *eye roll* Imagine our soundly sleeping child being awoken from a dead sleep and having a straw shoved in her face. She was thrilled. I think we got a grand total of 1 t. of water in her mouth before we realized our mistake. We further realized our mistake when she finally woke enough to have a 45 minute long conversation with herself once we put her back to bed. We had high hopes of getting a bit more rest before the old alarm went off. I don’t know about Josh, but I got about 17 more seconds of sleep. Oh, those sweet seconds of sleep before the alarm wrecks your world. Oh well. I was too hyped up to care too much.

I think we were the second people at the hospital, and at that point, our gluttonous daughter had not realized that it was morning and that she had not yet been given breakfast. Praise. She was a doll for the majority of the morning; charming everyone from the lady at check in, to the people in the waiting rooms. We learned how fun it is to pat hospital waiting room chairs.

When the Anesthesiologist asked us if Eliza generally is good with going to strangers, or if we thought it might be beneficial to give her a little something to relax her, we said, ”All the drugs, thanks.” By the time the Versed was through with her, she would have gone with a fire breathing dragon pell-mell. Bless her sweet heart. Watching her walk away, staring blankly at the nice nurse carrying her off to the OR, it seemed to me to be a dream. Josh needed a minute. As a daddy, putting your baby in the hands of a stranger with needles and knives is one of the most helpless of feelings. Or so I assumed.

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After about 45 minutes and 2 bacon egg and cheese croissants later, Dr. Chester came back into our private little waiting room to let us know everything had gone perfectly. She was able to get great margins, and Eliza handled the anesthesia very well. We were so relived!! Before we knew it, we were headed to recovery to see her. The nurse warned us that sometimes babies suffer from emergence delirium. That, apparently, makes them forget everything, including their parents, and inconsolably scream and thrash thinking that they are being tortured. Wonderful.

My first sight of Eliza upon rounding the corner in recovery was of a sobbing and confused baby trying to pull out her IV and get away from the nurse. Not comforting for someone who just heard about emergence delirium. We rushed over and as soon as she could untangle Eliza’s slew of wires and tubes, the nurse gave her to me. What a feeling… holding my sweet baby girl who was so tired, so confused, so hungry and presumably in a bit of pain…I was so overwhelmed with tenderness. Thankfully, Josh had generously filled a bottle for her that morning, and within moments, E was contentedly nestled in my arms. After she ate enough for a baby cow, she promptly fell asleep in my arms. While that may seem like no big deal to most parents, please know: THIS NEVER HAPPENS. I dream of this happening on planes and in church and…. No.

Sweet, sweet memories.

Within about 30 minutes of our arrival to the recovery room, we were sent on our way with a few instructions, a few phone numbers, and a little tube of ointment for Eliza’s incision.

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The rest of the day was mostly a lot of sleeping and cuddling, and neither Josh nor I had any complaints. We were able to return to Chattanooga after a nap in our hotel and a quick smoothie.

And that’s it, folks! Nothing too glamorous or terrifying. The first of many surgeries and an easy first it was. We are so thankful.

Dr. Chester told us that we would probably hear back from pathology about the mole within the next couple days, so we settled in for the wait. Here’s to the waiting. Thank you Jesus for a smooth and uneventful surgery. Thank you to everyone who has been praying with us. Thank you for reaching out. Thank you for your love and support. We feel our village and we would be hard pressed to go through this without you.

Surgery

Well, this day came more quickly than we anticipated…

To pick up where we left off, the condition that Eliza was born with is congenital melanocytic nevus. Because of the concerns addressed in the previous post (melanoma risk and neurocutaneous melanocytosis), one of the prevailing schools of thought is to remove the mole cells all together. The fewer the cells, the less risk for transformation. Unfortunately, there aren’t that many doctors with lots of experience in this area. Fortunately, the Lord, in his sovereignty, knew that we would need one.

Alisa spent time researching doctors and talking to a few about the procedure. When she was on a trip, she felt strongly that we should call a doctor in Nashville. Dr. Caroline Chester. She sent me her website and asked that I check it out. When I did, I immediately called Alisa. I knew Dr. Chester personally. Her son attended a summer camp I worked at during veterinary school. To say we see the providence of God in that would be an understatement.

When we went to consult with Dr. Chester in Nashville, she walked into the room and said, “I know you.” It is amazing to see how the Lord orchestrated mine and Alisa’s path to give us connections exactly where we need them. We planned to begin surgery with Dr. Chester starting in January. The course of surgeries will be rather extensive for removal. The removal is accomplished by a process called tissue expansion. Imagine a sterile balloon is inserted under healthy skin tissue and then slowly expanded over 2-3 months. The newly expanded skin is then grafted onto the area where the mole skin is removed. It’s an intense process, but we feel it is the right decision for Eliza and we feel we have the best team possible. So that was the plan. Until Eliza decided to change it.

We are always careful to monitor Eliza’s nevus for any change or any new growths that may develop on it. On Friday night, we noticed a new bump. It is dark and has grown and is scary looking. Given the risk of melanoma, we became concerned. As soon as offices were open on Monday morning, we called Dr. Chester and Dr. Spraker (pediatric dermatologist). Both agreed that the spot looked scary and needed to be removed. As an aside, these two women have both gone out of their way to help us and assure us that we will get it taken care of. They exemplify what it looks like to be physicians who care about their patients and are taking swift action to help remedy it. We could not be more grateful. So after consulting with them, we decided to have an excision performed by Dr. Chester. The date for the surgery is Wednesday, October 4, 2017. After that, the mass will be sent off for histopathology and, hopefully, will come back completely benign.

Alisa and I were sitting at the dinner table the other night and talking about Eliza’s first birthday and the possibility that she could have cancer. That is not a conversation that you ever plan on having. And, frankly, it’s one I don’t want to have. But it’s where we are right now. But in the midst of all of that, our hope, our trust, and our unwavering confidence is in the Lord. He knew Eliza.  He formed her. And He did not make a mistake. Her story is His and her life is His, so we trust him.

These verses from Daniel have resounded within our hearts.

 “If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us[a] from Your Majesty’s hand.  But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”

We believe that the Lord will make this mass completely benign. We believe that there will be no concern. We believe that He is in control. And we will not bow to the gods of worry or fear.

We do covet your prayers. Prayers for peace. Prayers for completely benign results. And prayers for laughter in the journey.

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The day we met Eliza Jane

The beginning of our story with sweet Eliza Jane!

September 28, 2016

Alisa and I were beyond thrilled to welcome Eliza Jane Singer on September 28, 2016! After 43 hours of labor (Alisa is next world tough), Eliza made her appearance into the world and immediately captured our hearts. She was beautiful, all 6 lbs and 13 ounces of her. She was a long baby too, measuring 19 inches. We were in love from minute one.

It wasn’t long after she was born (read minutes) that we both noticed a large birthmark on the left side of her head with a round, red mole in the center of it (see the picture below). At first it almost looked like Eliza was born with a full head of hair on one side and no hair on the other side. Neither of us thought much of it until every nurse started to come over and look at it. And one by one, they all said that they had never seen anything like it before that day. Cue the worrying. Our OBGYN also said that he had never seen anything like it. Cue even more worrying. The neonatologist said he had never seen anything like it either. Cue the worrying and googling.

By the second time the hospital’s neonatologist saw Eliza’s mark, it the day after Eliza’s birthday. She was doing well and behaving completely normally so a lot of our anxiety had lessened and we just wanted answers. After the hospital neonatologist spoke with colleagues at the medical college near here, we were pretty sure the diagnosis was a congenital melanocytic nevus (CMN). The rabid reading of journal articles and blogs of other kids that had been diagnosed with CMN began. By the time we left the hospital, we had an appointment set up to see a pediatric dermatologist in Atlanta. Dr. Spraker, at Emory University, is fantastic. We loved getting to know her and have her medical expertise in this field. As suspected, Dr. Spraker confirmed that Eliza’s mark is a CMN. Essentially, Eliza’s large dark spot on her head is mole that is composed of melanocytes (pigment cells). For whatever reason during development (the cause for CMN is still unknown), Eliza’s body did not distribute her cells evenly throughout her body. Rather these melanocytes all collected in certain places, with the most notable being on her head. She does have some spots on her backside as well, but these are much smaller.

There are a few complications that are worrisome with Eliza’s CMN. The first is that patients with large CMN will also sometimes have melanocytes in their brain and spinal cord. This can be very detrimental, and even fatal, as it can greatly impair their neurologic function. The second concern is that children with CMN are more likely to develop melanoma. If Eliza’s mole was to transform and become malignant, there is currently no known treatment for pediatric melanoma. When Dr. Spraker informed us of these concerns, Alisa and I both cried and prayed for quite a long while. It was hard news to hear, but necessary to know the risks. Both of these complications are relatively low risk (~5% each). However, to have a child with even a slight risk is scary. Treatment for a CMN is also not clear cut. The prevailing thinking on treatment, however, is to remove as many of the melanocytes as you can. This is done through a process called tissue expansion. An expander (think water balloon) is placed under healthy tissue and filled over the course of 3 months with saline to allow the skin to stretch around it. After three months, the expander is removed and the flap of stretched skin is used to cover the area where part of the nevus is removed. Each round of expansion will involve two surgeries: one to place the expander and the second to remove part of the nevus and place newly formed skin where it used to be. Needless to say, this was a lot to take in. We found the website nevus.org a very helpful tool in educating us on the process and referring us to doctors who do this surgery. While these surgeries are performed routinely on patients with CMN, surgery in a young baby is not without risk. Dr. Spraker advised us to go home and think on how we would like to proceed.

After much time talking, praying, and seeking wise counsel, we have decided to move forward with surgery for Eliza to have her nevus removed. Because of the extent of Eliza’s birthmark and the fact that it is on her head and forehead, we fully expect that Eliza will have to multiply rounds of expanders and removal. We are in the early stages of seeking consults with pediatric plastic surgeons who perform the surgery. As we progress, we will keep everyone updated with Eliza’s progress and share photos as the process unfolds (which are sure to look crazy since she will have expanders underneath her hair and forehead).

We share all of this with you for a number of reasons:

1. I’m sure some of you have seen the dark spot on her head in some pictures and wondered to yourselves, “What’s up with that?” This is what’s up with that. It’s a rare condition and knowledge is power. Who knows? Maybe you will have another friend with a child who has this and you can help point them to the diagnosis.

2. This is not the easiest road to walk. It’s scary being told that your child may develop melanoma. Or may have tumors in her brain. It takes a village to raise a child. In our case, I think our village may be even bigger. We covet your prayers, your encouragement, and your rallying around us as we process through all of this.

3. We know that this is not a mistake. Before the foundation of the world, the Lord knew that Eliza would be our first child. There is no doubt about that. And He knew that this would be the most challenging, difficult, and joyful process all rolled into one. And we want to give Him the glory due His name through this time. We want you all to journey with us as we get to “taste and see that the Lord is good.” And let me tell you, His hand is already ALL over this.

Thanks for walking with us, friends.

“If God is the Creator of the entire universe, then it must follow that He is the Lord of the whole universe. No part of the world is outside of His lordship. That means that no part of my life must be outside of His lordship.” R.C. Sproul