Goodbye First Grade

Today was the official last day of the school year for our girls. It was a beautiful, sunny day where Johanna played outside with her pre-school friends.

However, Adria was at home lying on the couch. We did not realize it then, but her actual last day of school was two weeks ago on May 26 - the day before she went in for her wound closure surgery. She has been lying down at home since then because her follow-up doctor appointment last week showed that the area with stitches was struggling to heal. She needs to stay off her bottom and limit any transfers, so we dress her in bed then carry her to a couch every day.

Unfortunately, Adria missed several fun activities at the end of her First Grade year because of this. There was an Author's Tea Party where the book her class wrote was presented, Movie Day, an Aloha Party, Field Day, a walking class trip to the Library, and Raiderpalooza (bouncy house end of school year party).  I was really bummed that she had to miss all this fun with her friends, but we tried not to talk about what she missed. We've tried to focus on all the positive.

Like the gift bags and care packages that came from several friends and family, each one full of activities and books that she could enjoy while lying on the couch. She loved them all! But I think her favorite gift may have been the stack of cards her teachers sent home with me last Friday. Every student in her class decorated a personalized card and wrote her a special note.

Adria would read the cards and often sigh, "Aw that's just so sweet. I don't know what to say!"

I chuckled the other day when she said, "Man, mom, it's like ever since I've had the surgery...It's been all about me!"  Bedrest is not so bad when people around show they care and miss you.

Adria has also taken this time at home to learn how to send iMessages from her iPad. I loved it when I got a message from her full of Emoji love that asked, "Are you having a good day at work today?"

We have been impressed with how good of a mood Adria has stayed in and how she's complied with her doctor's order for bedrest these last two weeks. Part of what kept her calm and willing to lie around was our incentive. If she rested and let her body heal, she may be able to go back to school and say goodbye to her friends before summer break.

Adria's first day out of the house in over a week when she visited her friends at school yesterday.

And so she did. Yesterday, Daddy took Adria to school for a pizza party her teacher's hosted for lunch.

Adria was able to say Hi and Goodbye to the school nurse she saw every day along with her great teachers and all the friends in her class. I was not able to be there, since I was on a special pre-school field trip with Johanna, but it sounded like Adria had a great time.

Each of her friends shared something they had missed about Adria, when she was not at school, then they each came up and gave her a big hug. To minimize the risk of any damage to her surgery wound, Adria spent the entire visit in her wheelchair, but she did not seem to mind a bit. She was just excited to see her friends again! Plus, she thought it was great Daddy-Daughter date.

Adria poses with her First Grade class and teachers during her visit yesterday.

And maybe a little sad later, since that had to be goodbye for the summer. She's going to miss them all so much, but she loooved getting out to see them.

We believe healing is happening, and we are so thankful for your prayers. Here's to hoping she has almost total healing by the time of her next doctor visit on June 21.  She's got swimming and summer fun to look forward to...along with a big family trip to Canada coming up soon!

And...here's Johanna having fun on her full day trip to XBos Family Fun Center in Smyrna yesterday!
She's going to miss preschool too, but she'll go back for one more year of PreK this fall.

Surgery for Adria

"Mom, you shouldn't have surgery. It's really boring," Adria said tonight while lying on the couch.

Sit as little as possible and lie down at home for almost a week. No swimming for 2 weeks. No sports for 4 weeks. That's the doctor's orders after Adria's surgery on Friday. It's not ideal for our little seven year old, who's disappointed to be missing a week of fun at the end of the school year, but we are so thankful she's doing great!

At home Adria has not been in pain and seems to be recovering well, but she needs to limit her activity and time sitting for her body to heal properly. Especially considering, the doctors encountered a little surprise during her surgery.

She has been pretty fortunate when compared to many children with spina bifida, as this is the first surgery she's had since she was only six months old. But now she is old enough to be aware and apprehensive of what's involved with "surgery."

Johanna and Adria painting picture frames. Trying to find fun things to do while lying down can be tricky,
but we are trying to keep Adria still this week to allow her body time to heal after surgery.

Why did she need surgery?

You are probably asking this question (especially if you missed the recent post Steps Forward...and Back).

I'll try to summarize without getting too detailed. Adria lacks sensation on some areas of her bottom and feet, and early this year she developed a sore that became an open wound in the high pressure area where she sits. We've been treating it daily and seeing doctors for months, but it simply would not heal.

Finally, the plastic surgeon said it was time to stitch it closed. She had wanted to give it time to heal naturally, because with stitches, there's still a risk it could open again and possibly be worse.
Thankfully, the wound had never gotten infected. Yet, after almost four months, it was time to take action.

For the average person, this wound would be very painful. But this type of wound does not usually develop because we feel pain when the pressure gets too much, and we adjust our sitting position accordingly. Adria lacks the nerve endings to give her these cues, thus leading to this problem on her bottom.

Telling Adria

We did not tell Adria about the surgery until a few nights before Friday. She likes to know what is happening, but we knew she would be anxious about it, so we waited.

Those two nights before, she was pretty weepy and nervous. I think it was more the fear of the unknown and being in a room without us. The hospital had a helpful video for children to watch in preparation for surgery, but Adria was still afraid. Thankfully, she was still able to rest well and be distracted at school.

Surgery Day Surprise

We did it. We woke up at 4:30 a.m. on Friday and made it out the door around 5:30 a.m. That's kind of amazing for us.

Adrian and I headed north to A.I. duPont Hospital for Children with Adria. Johanna and Judah woke up early with the commotion, but stayed home under the watchful care of Adrian's mom.

The children's hospital really does a great job of putting children and parents at ease. Adria got her arm bands, and they even gave one to her special bear friend Foo-Foo! She loved on that bear and her turtle friend Celia, who both went back to surgery with her, while mommy and daddy waited outside.

Adria smiles just a few minutes before going back with the anesthesia team.
Her "babies" Foo-Foo and Celia were great comfort to her.

Adria and her babies.

The pre-op area was a buzz of activity with dozens in blue scrubs milling about. There were many questions and vitals taken before Adria went back for the anesthesia. They gave her some calming medicine before they took her back and next thing I knew, her eyes were droopy and distant. I think that's the last thing she remembered until we saw her again about 2 hours later.

Waiting is tough. You know your child is being operated on and you just wait. They have a screen with colors and codes for you to follow your child's general progress, but you'll go crazy if you stare at it too long. We had a nice interruption during our wait, as a friend just happened to be up there for an appointment with her son at the same time.

Surgery started around 9 a.m. A lady gave us an update halfway through, then sometime after 10:30 a.m. the plastic surgeon came out to talk.

It was finished! Adria was doing good but still needed time to come out of anesthesia.

The surgeon explained that while operating, they found that Adria's tailbone was just under the skin where the wound had occurred. That helped explain why the wound struggled to heal, because of the extreme pressure from the unusual angle of her tailbone. So they removed it!

She said it was about an inch of bone that was non-essential for Adria and would not be missed. It should also help prevent this issue from happening again.

Adria no longer has a tailbone!

That was our surprise, but it seems like it's no big deal. Her tailbone was at a much different angle than normal, so it caused more harm than good.

Recovery

We went back to the PACU (Pediatric Anesthesia Care Unit) to be with Adria while she continued to come out of anesthesia. Poor thing was so dazed and sleepy for a while. It upset her. Even the blue raspberry ICEE slushy they gave her did not help much. She was very surprised to realize that the surgery had already happened and almost disappointed that she did not remember it. Silly girl.

She lie in the hospital bed with an IV in her arm cuddling her Foo-Foo. For a minute, my imagination took over and fast-forwarded 20 years and thought of seeing her in a bed cuddling a newborn baby. That was weird. And kind of emotional.

Around noon, Adria was improving enough to be discharged and put in her wheelchair. She was able to eat some lunch before we headed home.

We THANK everyone who prayed for her and showed support through text messages and Facebook love!!! Adria appreciated reading the messages with me before and after her surgery.

She even got a surprise package in the mail from her school nurse this weekend! It held some activity books to help keep her occupied during this "boring" recovery period.

We are so thankful she is recovering well!

My 29th Birthday

February 7, 2011

Bright lights surrounded me. Voices. Activity. Hustle.

The fog lifted as I began to regain consciousness and awareness that I was lying on a gurney in an Emergency Room. This time I was not there for my husband...it was for me.

Nurses were undressing me and started to ask questions.

"When is your birthday?"

"Today." I responded groggily. "It's my 29th birthday."

The nurses were surprised and sympathetic that I was spending my birthday evening in the ER.

I looked down at my brightly colored undergarments that were currently exposed and said, "At least I wore a cute bra today." Ha! Trying to see the positive in the moment...

It had been an interesting day and weeks leading up to my unexpected hospital visit.

That morning I had given a training presentation during our weekly sales meeting. We lived in Indianapolis at the time, and I sold new homes for a national builder. In fact, we had just moved into our own new home a few weeks before.

Near the end of our sales meeting, a surprise arrived. Someone brought in a large, beautiful bouquet of purple flowers...and they were for me! An incredible birthday gift from my husband. A few tears rolled down my cheeks at his thoughtfulness.

The beautiful birthday bouquet my husband had delivered to me at work!

The guy sitting next to me said, "Now that's the reaction we hope to get!"

I was genuinely very appreciative, plus I was already super hormonal. Just three weeks before I had endured a painful miscarriage. Even though I was just 10 weeks pregnant when it happened, there was a great deal of pain and blood involved.

The problem was, the bleeding had not stopped. It had lessened, but I was trying to be tough and just let my body heal on its own. But it was not.

After the sales meeting, I went back to my office in a model home that day and waited until my late afternoon OB appt.

Warning: This part gets kind of gross!

Time for my OB visit...Let's see. How do I put this delicately? Oh whatever, let's just be real and put it out there! Maybe this story can help another young mom avoid a similar ordeal.

I had developed a major blood clot as a result of remnants from my pregnancy. For weeks after I lost the baby, I had been bleeding pretty heavy. Once my OB removed the clot, it was like a disgusting dam burst. I laid there for 45 minutes and could not get up because of it. Yep, totally gross.

The somber nurse, ironically named "Sunshine", looked a bit horrified and said she'd never seen that much blood in their office. I began to feel extremely faint.

They called Adrian to come in and said they needed to take me to the hospital next door for surgery. I asked for some extra clothes - the business suite I had on was not working for me anymore!

I fainted right after Adrian arrived. Too much blood loss. I completely passed out on the floor as they were trying to get me ready to go to the hospital. Once I regained consciousness, they attempted to help me stand and walk out. No good. I was out again. (In case you don't know, I have fainted many times over the years when in pain.)

My husband and my OB had to CARRY me out to the car and drive to the hospital right next door, since it was faster than calling the ambulance.

So there I was lying in the Emergency Room on my birthday, getting prepped for D&C surgery. Guess our dinner plans would have to wait...

The procedure was completely painless. Well, they gave me anesthesia, and I was completely unconscious for the whole thing, so that makes sense. But literally, I never had any pain from it that night or the next. It was the simplest surgery, not sure why I was so worried about it before.

We were back home around midnight and still made it out to celebrate my birthday the next night.

But it was a day that would go down in my personal history book as my most memorable birthday! 

That was 5 years ago already, but it's all so clear, I can still smell the scent of a Five Guys cheeseburger on my anesthesiologist in the Operating Room before he made me black out. Ha!

Just two months later, I became pregnant with Johanna - her name means God is gracious.

I may have spent my 29th birthday in the ER with an emergency surgery following, but it was not a ruined birthday. After all, there was that surprise bouquet delivery from my husband! Take the good with the bad.

(And it's definitely easier to share this story 5 years later.)

A New Friend Like Her

"Mom, that was the BEST day of all the BEST days!" Adria proclaimed at 10 p.m. on Saturday night as we left the home of her new friend.

It was a special evening as Adria, Johanna and I got together with a family we had randomly met months before at a local festival. We had walked past a sweet, young girl with leg braces sitting on the curb next to her wheelchair eating some chicken fingers.

We said "Hello" and Adria was pleased to learn that she and the girl named Mallory had much in common. They were both 7 years old, liked the color pink, and were born with Spina Bifida! Mallory's mom and I were excited to discover we live less than 30 minutes apart, so we made plans to get together. And 3 months later we finally did!

Mallory and Adria meet at the Apple-Scrapple festival in October

Since that day, Adria has talked about Mallory often. It really made an impression on her to meet another girl like her. She doesn't have any local young friends with spina bifida, and she doesn't really remember the SB friends we had met in Indianapolis.

More often lately, Adria sighs and gets sad about the fact that she's the only one at her school that has to where leg braces and can't go to the bathroom like the other kids. Being with Mallory on Saturday night was a special treat for all of us. And we found the girls have other things in common...they LOVE Shopkins and Pizza!!!

Shopkins...they're all the rage with little girls today!

We went out to dinner and while Adria and Mallory enjoyed their slices of pizza, Johanna got along well with her 5 year old younger brother and I enjoyed talking with her mom Nikki.

Mallory, Mitchell, Johanna and Adria have fun at dinner together.

It's kind of great to be able to talk with another mom who completely understands and has experienced the broad spectrum of things associated with a child who has spina bifida - Level 2 ultrasounds, hydrocephalus and shunts, back and head surgeries, AFOs (leg braces), catheterization options, Peristeen bowel program, urinary tract infections, wheelchair fitting, needing diapers at school, urodynamics studies, and so much more! We could totally relate and shared ideas and experiences.

Mallory is several months older than Adria, so she is in second grade. She can get around at home with her walker and primarily uses her wheelchair when in public. In 2014 Mallory was the Eastern Shore Ambassador for the March of Dimes organization that raises funds and awareness for babies born prematurely and/or with birth defects.

After dinner, we watched the musical production of "You're a Good Man, Charlie Brown" at a local high school. Adria and Mallory sat side by side and enjoyed the show.

Two girls enjoying the show...and comparing their AFO styles (leg braces)

The adventurous younger siblings had fun but didn't sit still too well :)

Mallory says hi to "Sally" from the Charlie Brown show 

Johanna poses with PigPen

Just before leaving Mallory's home, I took Adria to the bathroom to catheterize her - we have to about every 4 hours during the day, which is the same for Mallory. When I was taking care of Adria, she looked at me with a smile and said, "I bet Mallory knows what we're doing, since she has to cath too." Simple things like this, knowing that she has a friend who understands what her life is like, really meant a lot to Adria.

And so Adria had her official BEST DAY EVER...for now.

Today, January 20th is the "International Day of Acceptance" encouraging our society to continue embracing people of all abilities and becoming more educated on how to empower and support them and their families. I'm believing for great opportunities throughout life for these 2 precious girls!

Treasured Times

Judah is 3 weeks old today! If I'm totally honest, I cannot believe how "easy" these first few weeks with Baby Judah have been. He's already been to the Zoo, the Beach, and a Strawberry Festival (since Mama has recovered well.)

Now before you get jealous or annoyed at our good fortune, hear me out.

I look at him now, sleeping peacefully in the small cradle by our bed with an adorable head full of dark hair, precious closed eyes, perfect little lips, and a pudgy nose that clearly comes from my side of the family. I look at him and have a heart full of gratitude.

Daddy and Judah relax with some skin to skin time.

We have a son. A healthy, calm-tempered, beautiful baby boy.

He sleeps well and often. He nurses like a champ and has since the day he was born. He rarely spits up or has massive diaper blow-outs. His skin is dark, clean and clear. His eyes are wide and alert when he's awake. He's pretty patient with his adoring older sisters. What more could a mother ask for?

Precious baby Judah

As the mother of three children, I know that it's not always this good. And I know that this precious newborn phase lasts ever so briefly. Some parents are relieved when it passes because it can be so difficult. But this time around, I want so desperately to treasure this sacred time. Especially since this will likely be the last time I ever experience this phase.

My expectation was that these first few weeks would be so difficult. That's how I remember them with my daughters. They were precious times too but they came with so much more drama. And when I hold Judah, I cannot help but compare his first couple of weeks with his older sisters...

Johanna was born in December in Indianapolis, In. We were 600 miles from our families, though they did come out to visit and help as they could. The support network was so much smaller out there than what we've experienced here, and I felt sad that so few people had the chance to meet Johanna the first month of her life.

While Johanna was an adorable baby, she struggled more with nursing at first and spit up A LOT. I was constantly changing her...and myself. She was very restless at night and kept us awake many nights.

But the most difficult memories about her first weeks and months of life was the fact that it was the worst "season" of Adrian's seizures. During the two months I was home on maternity leave, my husband had three grand mal seizures that left him impaired physically and mentally. Because of that, he has almost no memory of holding her as a baby :( And in truth, he did not hold her much.

And I struggled with the Baby Blues. Maybe it was because of the seizures, or the challenges with Jo-Jo, or the dreary winter weather, or the on-slaught of medical bill issues that arose in the midst of it all. Whatever the case, I battled post-partum depression for the majority of the first year of Johanna's life.

Welcoming Baby Johanna in December 2011

Adria holding baby sister Johanna for the first time.

Adria was born in September in northern Delaware. The first two weeks of her life, she and I were both recovering from surgery, my C-section and her spina bifida back closure. We spent every day sitting in the NICU at A.I. duPont Hospital watching her and as she improved, we gently held her and tried to avoid getting tangled in the wires connected to our tiny girl.

We spent our nights sleeping across the street at the Ronald McDonald House. I don't think we drove the 1.5 hours home at all in the first 12 days of her life. We didn't want to leave our baby that long.

Daddy with baby Adria soon after her birth.

We were inundated with information about her spina bifida: the need to monitor the fluid on her brain, how to catheterize her if needed, watching for leg movement, and when she would be able to lie on her back once her wound healed.

It was overwhelming at times, yet still we felt thankful as we heard stories of what other parents were experiencing with their babies in the NICU. Some had been there for more than four months already.

Treasured Times

Now, we have Judah who has been such a healthy boy. Our love for him is certainly no more than his sisters, but we sure do appreciate how good he's been to us! Plus, we have been so blessed with meals and gifts from our friends, family and neighbors. What a treat! Tonight I cooked dinner for the first time since he's been born.

As I hold another little baby in my arms, I try desperately to impress on my memory these treasured times. And I enjoy the ease of holding Judah without worrying about wires or back wounds or getting regularly covered in spit-up.

But most of all, I love watching his Daddy and sisters hold him and love on him. Seeing them so happy with this little guy is beautiful. 

Sisters loving on the Baby Brother they had hoped for!

I hope Judah keeps his relaxed and chill demeanor throughout his life. Of course, I know quite a few toddler and pre-school boys and realize there is a lot of adventure to come!

Nursing, Pumping, Working Mom

The Black Bag has emerged.

For almost three years it hid inside an old diaper box, untouched and gladly forgotten. But at 3:30 a.m. a few nights ago, my husband went rummaging through our attic to find it. I needed it...so badly.

I have a love/hate relationship with this Bag. I have spent hours of my life alone with it. Secretly in a bathroom or behind locked doors in a basement.

At first glance, it looks like an oversized purse.

The Black Bag

But upon closer inspection, you'll find that it has a motor, a plug, long and thin clear tubes, and a pair of cone-like contraptions with bottles. What is this Black Bag?

My Medela Breast Pump.

Medela Breast Pump in Judah's nursery

I should have given it a name. Like Bessie or something, but then that's just ridiculous. This week I have been so thankful for it. As a mama with a newborn baby, one of the more painful post delivery experiences is the "milk coming in" and engorged breasts. (I'm just being real here.) If you're a new mom, just be prepared. It's this miraculous gift God gives us, but wowsers can it hurt at first! Don't worry, it lessens in time.

Right now, I'm only using the pump once a day...for relief and to begin to build up my Mommy's Milk supply for when I return to work in July. So far, one week old Baby Judah has not used a bottle, getting all of his nourishment directly from the source. Me!

Happy, healthy 1 week old Judah

But it was a much different story with our firstborn daughter Adria.

Mommy's Milk for Adria

She was born with spina bifida, L4-5 myelomeningocele, which required that she have major surgery at a day old to put her lower spinal cord back in place and close the opening on her back. This meant that she was separated from Mommy just a few hours after her birth and I did not see her again for more than 3 days (I still cry thinking about it...)

Adria at one day old after her spina bifida closure surgery

I had never breastfed, but I was determined to give it my best try even though I knew she likely would not be able to nurse from me for the first week of her life. And so my relationship with the Breast Pump began soon after she was delivered via C-section.

I was so paranoid that it wouldn't work. Some friends had shared difficult stories of how their babies struggled with "latching on" or their milk supply just couldn't keep up with baby's needs. And that was with "normal" healthy babies.

From the start, I began pumping every 3 hours. Religiously. Day and night. My body was confused. I had never labored and there was no baby around me to spur on the milk. For days I literally just got a few drops each time I pumped. So discouraging. But still, my mom or husband would transport those drops from my hospital to the children's hospital where Adria was in the NICU recovering from her surgery. And she would get a few drops of Mommy's liquid gold.

Daddy feeds baby Adria a small bottle with a few drips of Mommy's Milk.

Once I was sitting in the NICU loving on our newborn, my body got the hint and kicked into gear. Big time. Soon the supply flooded in, and I felt like I had two watermelons on my chest!

I was so excited when I could finally try to nurse Adria directly. I had to be so careful not to touch or hurt the wound on her back. It took effort, but she caught on and at just 3 months old she was a 16 pound baby!

Holding and feeding baby Adria for the first time.

Back to Work

With both of my daughters I returned to work full-time after about 9 weeks of maternity leave and continued to breast feed. I plan to do the same with Judah.

I nursed Adria for the first full year of her life and made it to about 9 months with Johanna. I am a firm believer in "breast is best" and the incredible health value of Mommy's milk for her babies. That said, I know it can be so difficult getting started and genuinely does not work for some mothers. I encourage women to try their best, but don't get discouraged or overly stressed out. If it doesn't work, that's okay. There are many healthy formula-fed babies out there!

And continuing to nurse when you go back to work is no joke.

I felt like the bag lady going into the office every day. My laptop bag, my purse, my lunch bag, my small cooler for the milk, and the Black Bag breast pump. Then twice a day, I would try to find 15-20 minutes to go into hiding and "express".

Some days, I would be in long appointments with clients and not have the chance to pump. Those days were awful. I'd be sitting there trying not to double over in pain as I was selling a new home. I mean really, what was I going to say?

"Would you excuse me, please? I need to go pump. My boobs are getting huge and killing me!" Yeah....

But I kept at it as best I could, bringing home fresh bottles of Mommy's milk everyday for Daddy to give our daughters. After a few months of pumping at work, my supply couldn't keep up and he would have to use formula to supplement.

The benefits of breast feeding ultimately outweighed the annoyance of pumping: promotes healthy babies with stronger immune systems, saves money on costly formula, and helps your body get back in shape with the 500 or so calories a day it burns.

But keep in mind, in order to keep milk supply strong, you've got to eat sizable healthy meals and drink lots of water. Just like when you were pregnant, your body is still sustaining another human life. How awesome is that!?

Pumping Advice

If you are new to this and in the market for a breast pump, I highly recommend Medela brand. If you're going to be using it daily, like I do, invest in a great one!

I use the Medela "Pump In Style Advanced", which I purchased about 7 years ago and am still successfully using with our third baby. You can get them at Babies R Us, Walgreens, Target and a few other places. It's about $250, but trust me on this, it's worth every penny.

Also, you need to know how long breast milk lasts in different settings. Here is a good, general guide from the CDC website:

Storage Duration of Fresh Human Milk for Use with Healthy Full Term Infants

Location	Temperature	Duration	Comments
Countertop, table	Room temperature (up to 77°F or 25°C)	6–8 hours	Containers should be covered and kept as cool as possible; covering the container with a cool towel may keep milk cooler.
Insulated cooler bag	5-39°F or -15-4°C	24 hours	Keep ice packs in contact with milk containers at all times, limit opening cooler bag.
Refrigerator	39°F or 4°C	5 days	Store milk in the back of the main body of the refrigerator.
Freezer			Store milk toward the back of the freezer, where temperature is most constant. Milk stored for longer durations in the ranges listed is safe, but some of the lipids in the milk undergo degradation resulting in lower quality.
Freezer compartment of a refrigerator	5°F or -15°C	2 weeks
Freezer compartment of refrigerator with separate doors	0°F or -18°C	3–6 months
Chest or upright deep freezer	-4°F or -20°C	6–12 months
Reference: Academy of Breastfeeding Medicine. (2004) Clinical Protocol Number #8: Human Milk

Now that I've shared way to much personal information, I hope that someone has found this helpful...or at the very least, amusing. Speaking of pumping, my little man better wake up hungry sometime soon or I'm going to have to hang out with the Black Bag again.

The Incredible Shunt Alternative for Hydrocephalus

I still remember sitting in the hallway of A.I. duPont Hospital for Children and hearing that CRY. It was one of the most beautiful sounds I'd ever heard. It came from around the corner and before I could even see her, I knew it came from our six month old baby girl. It was the sound that reassured me Adria would be okay after having just undergone head and brain surgery.

Six month old baby Adria that Monday morning before her surgery.

That morning was exactly six years ago today, but I still get emotional thinking about my husband and I sitting in the parent waiting room for a couple hours while our precious little Adria become only the eighth child in the U.S. to have a unique and revolutionary procedure done to treat her Hydrocephalus.  This build up of fluid in the ventricles of the brain is very common in children/babies with spina bifida (Adria has L4-5 myelomeningocele), but the typical treatment is a VP Shunt, which is a tube inserted into the brain to allow the excess spinal fluid to drain down into the abdomen. While this helps the issue, most children (and adults) with a shunt will have complications and malfunctions over time that can require multiple surgeries to correct.

This image shows what a Shunt looks like in babies. Many with spina bifida need this,
but Adria never did because of the ground-breaking procedure her pediatric neurologist performed on her.

Instead of having a shunt to treat her hydrocephalus, Adria's neurologist recommended a procedure called Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization (ETV/CPC). Yeah...try to remember that name, let alone explain to someone what it means... But the fact is, this procedure successfully treated Adria's hydrocephalus and six years later, she has experienced NO COMPLICATIONS from it or every required another surgery!!! This is truly incredible. The only evidence that she even had an operation is a small scar buried in the hair atop her head.

Adria's Recovery

Soon after we heard the familiar cry in the hallway six years ago, we saw our sweet baby and held her in the Recovery Room. It was a large room full of young patients just coming out of surgery with just curtains separating us. Unfortunately, Adria's cries would not stop because she was so hungry. In preparation for the surgery, she had not eaten since the night before and the IV nourishment just didn't cut it for her.

The nurses were concerned about her throwing up if I fed her a bottle. But I started to be in extreme pain too...any mother who has nursed her baby and heard the cries of a hungry baby knows what I mean. Before too long, a nurse heard me complain about it and asked, "Oh, do you still breast feed her?" I told her Yes, and the nurse said, "Well then she can eat! She should be fine to nurse, breast milk is okay for her tummy." Praise the Lord! At that moment, I was more thankful than ever that I could nurse Adria. Within minutes, we were all Much Happier!

As Adria recovered from surgery, she did experience a lot of swelling on her head and looked so different. But Daddy held her in his arms for hours at a time and she recovered well and was transferred from the PICU (pediatric intensive care unit) to a regular patient room late that night.

Adria in the PICU after surgery with swelling on her head and paddles on her hands to hold the IVs in place.
Good thing she had her Soothie pacifier to provide extra comfort!

Daddy giving his baby girl some healing love.

Adria recovering in her patient bed that looked like a giant cage.

Within a few days, we were headed back home with a happy little girl who just had a little bald spot of her head where the surgeon had performed the operation.

The Man Behind the Surgery

Occasionally in life we find ourselves blessed and touched by an individual simply because we were IN THE RIGHT PLACE AT THE RIGHT TIME.

Now I don't necessarily believe this is coincidence; it's more like divine appointment. And for our family, this happened at a most critical time in our lives.

We met Dr. Benjamin Warf when I was five months pregnant with Adria. In the weeks following the ultrasound that first revealed our baby girl had spina bifida, we found ourselves sitting in front of many different doctors and specialists...desperate to learn and understand more about this unique life I carried.

Dr. Warf sat there with us in a tiny room at A.I. duPont Hospital for Children in Wilmington, Del. His kind and humble demeanor immediately put us at ease, even as our minds buzzed with the information he provided. We did not realize it then, but I know this to be true now, he is one of the BEST PEDIATRIC NEUROSURGEONS in the World! This is no exaggeration.

He is the father of six children and actually pioneered the ETV/CPC procedure to treat hydrocephalus while serving as a missionary doctor in Africa for six years. He realized the need to treat this condition without a shunt, particularly in a developing country where a shunt malfunction can quickly become life-threatening. He had fairly recently returned to share this procedure in the U.S. when we first met him.

Warf remained at A.I. duPont Hospital only a short time, but he was there to operate on our daughter's spina bifida closure surgery at birth and this surgery six months later. That following summer he moved on to Boston to further develop and teach this new procedure to medical students at Harvard and work at Boston Children's Hospital. Before he left Delaware, he did teach the ETV/CPC to another neurologists who is still at A.I. duPont Hospital performing this life changing surgery on children.

Even today, six years later, this procedure is still NOT widely known or used in the medical and Spina Bifida communities. I am a HUGE supporter of it and highly recommend any parent research whether this is an option for their child!

Since it's very difficult to explain what this surgery exactly is, I'll let Dr. Warf do the talking.

I just found this great video where Dr. Warf explains Hydrocephalus, a shunt and the benefits of the ETV/CPC procedure! Take a look:

Why am I different?

The girls are finally tucked in bed with a later bedtime than usual, but Mommy didn't get home from work until 8:30 tonight. We needed an hour together...and that's about how long it takes for the night time routine.

Thankfully, Daddy did a great job holding down the fort for a long day and he even helped with taking care of Adria's cath and flush before I got home. But he shared with me a difficult conversation he and Adria had while he was caring for her; one he said would have likely left me in a puddle.

Adria told him that she didn't like the flush and asked if she would have to use it when she grows up. The "flush" is a saline fluid mixed with a small amount of iodine, and every night we use a syringe to insert 10ml into her bladder. As you can imagine, this is not a pleasant experience for her, but it's used to cleanse her bladder and prevent urinary tract infections that are much more likely from regular catheterizing.

She asked Daddy if he and I had to use a flush. When he told her no, it started the conversation that led to questions like:
- Why do I have to wear (leg) braces? Why don't the other kids in my class wear them?
- Will I always have to wear them?
- Why do I have to use catheters? Why can't I go potty?
- Why do I have a big scar (on her back)?
- Why am I different?

Then she sobbed, he said. It was very difficult to talk with her through this. Our little 5 1/2 year old cried for a time as her heart and mind pondered these things. She has asked some questions before, but not so many at one time and never followed by tears. It surprised Adrian and left him hurting for his precious daughter.

She did not bring it up to me when I got home from work, but instead sat on my lap and showered me with kisses. I guess she's worked through it for now.

Adria dressed for pre-school with her braces and Minnie shoes on...and fabulous bow and necklace

At one point, doctors told us that the "age of awareness" for children with 'disabilities' is often around 6 or 7. It's a this point when they are cognitive enough and often in school and more social environments to be made aware of their differences. Yet, this time of inquiry crept up on us. She is quite intelligent and very observant, so we should not be surprised that she is noticing and asking questions. It's difficult to know the best thing to say, but we try to reassure her that she is beautiful, uniquely created, and deeply loved.

We often talk about her spina bifida because I think an awareness of herself is important. She knows that she was born with a "bubble" and that doctors help fix her back, but beyond that there's not too many details we get into. It may be time to tell her more in a way she can try to understand.

It may also be time to watch that PBS show that I was so impressed with several months ago called  "Different and Same" to help her see that we all have differences and they make us all uniquely special.

Christmas in Our First Home 2006

Whether it ever existed I do not recall, but there seems to be no Christmas letter for 2006. However, I cannot let that year just pass by without a review. It was a significant year - the year we built our first home.

Our First Home

The Seely family has a large farm in Greenwood, and Adrian and I were blessed with a piece of land to build a home. We decided on a beautiful ranch design with a finished bonus room and 2-car garage. At the time, we thought this might be the only home we'd ever build and where we'd raise our family...we wanted to do it right the first time.

The home we built in Greenwood, Delaware. Photo taken in 2009 with landscaping.

Construction started on our home in early January, just weeks before my 24th birthday. Truth be told, I knew little about what to expect for the cost and monthly payment; real estate was quite foreign to me at the time.

History now shows us that early 2006 was just about the height of the housing market (if not slightly past) and home loans were easily obtained with no money down. We locked in at a 6.6% interest rate for 30 years.
Side note: mortgage rates hit an all-time low late 2012 with fixed rates less than 4%; that equates to savings of at least $400 a month on a home this size!

That year Adrian devoted countless hours to our home. He assisted with the framing, installed the plumbing, laid the tile in the kitchens and bathrooms, hung the siding, painted the walls and much more. He is very handy, especially when it comes to construction! I usually left for work in Wilmington by 6:30 a.m. and didn't get home until close to 7:00 p.m., so I did not get to see much progress until the weekends.

By June, the home was complete and we were ready to move in! However, right around that time, a frightening incident occurred.

The Washing Machine Incident

Adrian was working on installing the new washing machine when he let out a deafening yell. I ran in the laundry room to find him lying on the ground with a massive cut in his right forearm (I could see inches of his muscle...gags). He had tied into a 220 volt and the electric shock had actually cut his skin. Immediately, we went to the car and I started driving to the hospital about 20 minutes away.

The problem is, I don't handle blood and pain well at all. About halfway there his arm starting bleeding heavily and I couldn't take it any more. I pulled over just in time to put the car in park before I fainted! That's right, hard core passed out in the driver's seat leaving my husband to call his parents to come rescue us and take us to the ER. What a day!

It's really a miracle that Adrian lived through that. The doctor told us that if both his hands had been on the washer and that current passed through his heart, he would not be here...That wasn't Adrian's first close call and it certainly wouldn't be his last.

Two Wonderful Women

Once we moved into our new home, we welcomed two housemates. Women from out-of-state who were dating local friends of ours and wanted to be closer as their relationships blossomed. We jokingly called it the halfway house because within a year both women were engaged and soon married.

Three engaged couples and us! Ruth and Beth are on the left with their fiancés Brad and Ken.

Brad and Amanda are to our right. If we took this picture again today, there would be 8 children in it :)

 



We loved being able to share our home with Ruth and Beth, and the special opportunity to get to know these amazing women! Little did we know that four years later we would move to Indianapolis near Beth and Ken.

Youth Group

Our home also became a fun hang-out for the youth group we continued to lead. As youth pastor, Adrian was an exceptional speaker and leader; he was able to challenge and encourage many of the youth to recognize and use their talents for God's glory. That year, our church of about 100 members had a youth group that grew to over 40 teens attending our weekly youth gathering. I loved seeing God use Adrian in this capacity, but dealing with teen drama was no piece of cake.

Marketing Fun

Though I had a long commute, I did enjoy my marketing position with Nason Construction. That year they completed a $30+ million expansion to Christiana Hospital, Delaware's #1 medical complex. I worked tirelessly to put together an award submission that resulted in Nason being the first Delaware firm to receive a First Place Construction Excellence Award from Associated Builders and Contractors! Unfortunately, I did not get to attend the award ceremony in Las Vegas.

I never would have imagined that two years later, I would be having surgery in one of those new state-of-the-art Operating Rooms that Nason Construction built. Christiana was the only hospital in Delaware that has the expertise deliver a baby with spina bifida.

New Baby Boy

One more big event that year was the birth of my first nephew. For the first time, I got to really imagine what it would be like to have a baby as I experienced pregnancy and birth through the eyes of my dear sister. I was able to join her in Vermont when Gabriel was born, and I fell totally in love with this little guy!

Holding my precious nephew Gabriel (this was taken the summer of 2007)

We finished the year celebrating Christmas with Adrian's family in our new home. It was truly a blessed year in our lives.

12 Days in the NICU, so long yet so short

Baby Adria spent the first 12 days of her life in the NICU (Neo-natal Intensive Care Unit) at A.I. DuPont Hospital for Children. Really, we were fortunate it wasn't more because many babies have to stay much longer. For instance, my friend Amanda's preemie little boy was recently in the NICU for 35 days and some of the mom's we met during our time in the NICU had been there for months with their babies.

I ached for them because even just 12 days can feel like forever when that is your whole world. 

Her first three days in the NICU, I was not with her. It was a heart-wrenching experience to deliver my newborn baby and have her taken away from me for days after only getting to see her a few minutes. As I've mentioned before, she had to have spina bifida closure surgery at the children's hospital about 20 minutes away, while I had to remain at Christiana Hospital for a few days to recover from my own surgery.

It confused my body. Other than the piercing pain in my gut from the C-section, my body had no proof that my baby had come out. I had never gone into labor or had a single contraction that I felt, and there were no cries or coos from a newborn baby around me.

While it was painful during those days to be apart, I was comforted knowing I would see her soon. I couldn't help but think of mothers who do not have that comfort... Plus, Daddy was there with our little girl, while my mom offered support to me.

Daddy in the NICU while the nurse tended to Adria

I wanted desperately to be able to give our baby mommy's milk and the early colostrum that they call "liquid gold" for newborns. But, my body did not think it was time for milk yet. I tried to pump every three hours, but during those first few days only a few drops came out. The nurse would still put it in a tiny syringe, and have it taken up to A.I. DuPont Hospital where Ade could help feed it to her.

However, Adria was not allowed to eat anything her first day of life before her surgery. She was not happy about that! She had an IV that nourished her body and was quickly introduced to the Soothie pacifier, which Ade said she sucked on feverishly. That was the start of a special three year relationship between her and Soothie :)

Adria was blessed to have one of the best pediatric neurosurgeons in the world to operate on her back and put the exposed spinal cord back in place. Dr. Benjamin Warf was only at A.I. DuPont Hospital a couple years, but he was there when my baby needed his especially gifted hands and brain. I will share more about this incredible doctor another time.

Baby Adria still sleeping from the anesthesia on the day of her spina bifida closure surgery.

Her surgery did go as well as we could have hoped, and she was able to take formula from a bottle within a day. We were very fortunate that she did not need a feeding tube or oxygen like many NICU babies. There was a 3 or 4 inch area on her lower back wear she had stitches from the surgery, so she had to lie on her tummy only for several days.

She was born on Monday, had surgery on Tuesday, and on Thursday I was released to go to my baby girl. Praise the Lord!

From the time I got to the hospital that day until she was released over a week later, we did not go home. We spent every day in the private room she had in the NICU. We ate meals in the hospital cafeteria, where I was given a free pass for food since I was a "pumping" mother. The only time we left the hospital during those 12 days was at night to sleep in our room at the nearby Ronald McDonald House. Thank you, if you've ever supported that charity! We were able to stay there for less than $20 a night, and it was a blessing even if we could not sleep that well.

Our only break out into the "real world" was a couple times when friends came to visit and treated us out to dinner. We suddenly remembered there was more to the world than our little baby and her hospital room. It was a blessing to have many friends and family come welcome our little girl. They'd have to take turns coming in as only two visitors (including me or Ade) were allowed in her room at any time.

Aunt Leona, who would become a huge help over the years with Adria!

Mommy holds baby for first time without pillow

Ahh, Daddy loves his little girl

Granny Seely falling in love

Uncle Cameron, who is the best gift-giver and ultimate fun

Uncle Aaron, who can always make Adria laugh

Mommy's cousin Clairissa

Gramma Outten loving on her newest grand-daughter

Grandpa Outten gives unconditional love

Mommy doesn't mind the cries

Lovin' her Soothie

Mommy's friend Amanda

Mommy's marathon friend Lori

Mommy's friend Rita

Super sweet Aunt Bonnie

We did not have to stay at the hospital all the time, but we wanted too. Just to sit there and hear her breathing and look at her precious features kept us interested. Plus, doctors regularly came by without notice and had important updates and valuable information about her progress that we didn't want to miss.

She underwent many tests during those 12 days, but the most important were the ultrasound and then MRI of her brain. The ventricles of her brain were slightly enlarged with fluid, so they were monitoring her mild hydrocephalus to see if she would need a second surgery on that before going home. Thankfully, she did not and we were able to bring her home once Dr. Warf determined that her back was healed enough to ride in a car seat.

They also showed us how to catheterize Adria to empty her bladder if necessary, but the tests on her bladder and kidneys did not indicate that we would definitely need to do that.

Though the days felt long sitting in that hospital room, we couldn't imagine driving home an hour and a half away and leaving our precious baby. We so appreciated the great care that she received at the hospital, and it gave me the opportunity to rest and heal from my surgery as well. But, when they gave us the okay to be released, we were more than happy to be packing up and heading home with our newborn!