Journey to becoming a School Board Member

It actually happened. The election for the open seat on the Woodbridge School Board. And I won.

Tuesday night with my parents after election results
were announced. My 8 yr old daughter Johanna said,
"Make a silly face!" 

It’s pretty crazy really. I went to the Department of Elections office in Georgetown back in early January to officially register as a candidate. A few people in the district urged me to consider running after my support of the referendum, so I spent months thinking about it and talking with school personnel and other Woodbridge parents. I finally went public with my decision in early March.

I was running unopposed until the very last day a candidate could register for the position. Darrynn Harris would be running as well, not for his first time.

Elections were scheduled for May 12, 2020.


But the world shut down for a pandemic and everything changed.

Our 11-year-old daughter Adria had just returned home after weeks in AI duPont Hospital for Children. Because of issues related to her Spina Bifida, she had undergone extensive bilateral leg surgery on February 19 to help improve her walking. She was looking forward to returning to school but never had the chance.

Suddenly in mid-March, Delaware school buildings closed and I became a home schooling mom to 3 young children. In truth, I never figured out a great balance between teaching my young children with remote learning and managing all my client’s needs as a Realtor, but we did our best.

In fact, as a newly licensed real estate agent I closed on my first home at the end of January. By the end of May, in the midst of coronavirus upheaval, I closed on 12 properties!

Simultaneously, my husband and I started construction of our first spec home on January 23.  We built it for investors on their lot in the Town of Bridgeville. The project went great and by mid-June a woman was happy to be moving into her new home!

I feel so fortunate and humbled because I know those months have been very challenging for many.

The Woodbridge School District specifically saw many tough losses in the first half of 2020. In mid-January we said goodbye to an incredible woman, Beth Judy, who was my husband’s aunt and a life-long teacher well-loved by so many in the Woodbridge community.  

In April, 15-year school board member and long-time Woodbridge educator and administrator Walter Gilefski passed away. His 5-year term was about to end, so his position on the board has been vacant since then. Now, I will fill that void.

Later that month, Adria’s incredible elementary school principal, Dr. Laura Leach suddenly died. We were all shocked and heart-broken at the news – she was just 39 years old and experienced a blood clot in her lungs. My fifth-grade daughter sobbed into my shoulder when I told her.

Then perhaps the most heart-wrenching of all was when we lost a 7-year-old princess and WECEC first grader, Bella Moore on May 13 after an inspiring battle with brain cancer.

Because of COVID-19 restrictions, no large funerals were held for most of these dear souls.

And the School Board elections were pushed back to June.

Then again rescheduled for July 21, 2020.

This is a tough day for me.

One year ago on July 21, 2019 there was a terrible accident at my workplace at the time. A vehicle ran into the office, ultimately causing my dear friend and co-worker Kaity West to lose her life. She was a stunning beauty at 31 years old. Fun-loving, kind and poised for great success in her home sales career.

I realized more than ever how frail life is. How we are never guaranteed the next moment.

It is part of what brought me to this day.

Life is a gift, and we largely decide what to do with it. I want to enjoy it, embrace it, and support others in their life pursuits.

One way of doing that is being on a team that impacts many of the educational decisions for our community, my children included. I realize that being on the school board is not a flowery position full of excitement; it will come with some new and unique challenges for me.

Our district is a very diverse population and there are many lower income families. Our schools, teachers and administration do a great job and generally care deeply for these children and youth. If there’s any way for me to support them in furthering the opportunities for a better life for these young people, I’m in.

Let’s do it.

My strong hope and desire is to reopen schools in the fall in some capacity. You better believe this hard-working mama is going to push for that, focusing on the safety of student and staff.


It has been quite a journey this year.

Thank you to those who voted and supported Julleanna Seely for Woodbridge School Board! I look forward to serving you.

   

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!

Steps Forward...and Back

Adria giggled loudly in halls of A.I. duPont Hospital for Children last Tuesday. She was watching a video of herself from over three years ago, where she was walking along in her braces wearing just a diaper.

"Hahaha, I just love my cute, chubby self!" she giggled, much to the amusement of her orthopedic doctor, physical therapists and her parents.

The video was filmed in the Gait Lab of the hospital, where they film children "ambulating" who have an abnormal gait. Adria's first video was made when she was three years old and had just learned to walk without her walker! It was really cute and touching to watch that video again.

Adria walking without her braces in the Gait Lab last Tuesday

NEW LEG BRACES = GOOD AND BAD

The doctors were looking at the video to compare how she's walking now. She recently got a new pair of leg braces (Ankle Foot Orthotics) that we were so pleased with at first. They are stronger than her last pair, which we had several issues with - they cracked because of her active lifestyle and she often complained of pain in her legs, However, Adria is struggling more with balance and running in her new leg braces.

Her physical therapist from school especially noted the difference. Adria had been making good progress in ascending and descending a few steps without holding onto the rail (yeah!), but now she has regressed and is struggling with some skills and balance.

The doctors at AI believe that the setbacks are due to Adria adjusting to the difference with the new braces and that in time she will regain her former abilities and continue to grow.  They think she looks great!

Adria's orthopedic doctor and physician's assistant check out her hips and legs.

They did suggest that it could be beneficial for us to get her some "Walk-Easy" crutches to use when walking longer distances, such as hikes through the woods. It's another good option for her to try and stay as active as possible, then just using her wheelchair for big outings like the Zoo or amusement parks. So, we'll look into those crutches more this summer.

Adria did get to go back down to the Gait Lab with the yellow "road" and land of Oz mural and take a new video. She rocked it, walking and running with and without her braces! It's just amazing to watch her progress.

UPCOMING SURGERY

We had another doctor to see on Tuesday as well. The pediatric plastic surgeon.

This doctor is new to us, as Adria has developed a surprising, new issue in recent months. She basically has bed sore/wound on her bottom and the stubborn thing will not heal!

Since February, I've been applying prescribed ointments and dressings daily. It's stayed clean and uninfected, but it simply will not close up and heal on its own.

The reason she got this in the first place is somewhat mystifying, but it has to do with the fact that she has limited sensation on her bottom. When at school, she would sit in a hard chair for prolonged periods of time without adjusting her position and a sore developed.

This would not happen to the average person because we would feel pain or discomfort from too much pressure in the same spot and simply shift in our seat. But Adria does not have some of those nerve endings because that lower part of her spinal cord never formed properly in my womb.

It's one of the impacts of Spina Bifida that we did not account for, but ever since this happened, she's had a nice soft cushion on her seat at school and her wonderful teachers make sure she gets frequent breaks.

But last week the doctor said it's time to take a more proactive approach in the healing of this wound. It needs to be closed surgically...

I did appreciate that the plastic surgeon used very vague language when talking to us about this with Adria in the room. Adria gets easily upset about needles, pain, and likely would have freaked out if she really knew what's going to happen next Friday. It will be an out-patient surgery but will require anesthesia.

After the surgery, Adria is NOT supposed to SIT for a WEEK!

She can walk some but will be restricted to lying on her stomach and side most of the time to allow for complete healing. She is totally going to miss school that week, but they did not want us to wait until school lets out - the surgery schedule is already full in June.

Yesterday, I got a called from the hospital reviewing Adria's health history and asking tons of questions in preparation for next Friday's surgery. The lady even recommended a video that the hospital has made to help parents and children know what to expect. It's really helpful actually. Here it is:





This will be the only the third surgery that Adria has had. I say ONLY because many children with Spina Bifida have had more than a dozen surgeries by her age! But Adria was only six months old for her last surgery...which was a much more intense procedure. It was literally surgery on her Brain. She was only the 8th child in the U.S. to have this operation that provided an alternative to the Shunt, commonly used to treat Hydrocephalus. Read about it HERE.

We are believing this upcoming surgery will be a simple procedure and she'll come home with us that same day.

Honestly, I've only explained this whole thing a little bit to Adria. She would be too upset if she knew the full extent of what's going to happen.

SO PLEASE DON'T SAY TOO MUCH TO ADRIA ABOUT THIS SURGERY. Thank you.
Just say an extra prayer for her on May 27.

EXCITING TIMES

You can't keep this girl down, though. She's got a couple of events before the surgery.

This Saturday, Adria's hoping to participate in her second Spelling Bee - she won Third Place in her first one a couple months ago!

And next week she has a Girl Scouts awards program. She joined a Girl Scout troop at her school this year and sold more than 100 boxes of cookies this spring. She's got some great natural sales skills (like her mama :)

Perhaps most exciting is the fact that Adria just started being able to Catheterize herself!! 

This is a huge step in independence for her. She's been afraid to try for so long, but I told her that if she wanted to try any Day Camps this summer she would have to learn to take care of herself. Apparently that was motivating for our social butterfly, and a few weeks ago she did it on her own for the first time! She's been getting more used to it since and is pleased with her new ability.

We are so thankful for Adria and her great progress forward, in spite of her challenges. She sometimes says, "Mom, I wish I wasn't a spina bifida person."  It's tough to hear this and know how to respond, but she's got a great spirit and we pray she'll always keep her sense of determination.

And always keep taking steps forward, even if she has set-backs from time to time.

Mommy feeling blessed with her babies on Mother's Day!

Mermaid Magic

"Do you want to see my panties?!" Adria asked excitedly.

Silly girl. But in this instance it was a perfectly suited question.

We were up at A.I.duPont Children's Hospital again last week for Adria to have a couple studies done to assess the condition of her bladder and kidneys. These are done periodically because she has what is called a neurogenic bladder and bowel, meaning she lacks control of these due to nerve damage common in people with spina bifida. (What is neurogenic bladder?)

When she had similar studies done last year, she was still wearing diapers and pull-ups. But not this time!

Adria striking a pose at the mall later that day with her new Frozen shoes.

We were happy to see the familiar face of the female technician administering the study. She asked if anything had changed since last year. We were pleased to report that Adria had NO UTIs (urinary tract infections) over the pas 6 months and with the help of PERISTEEN, she was no longer having regular bowel accidents!

Now, she is able to wear panties with a pad everyday! Adria was more than happy to say goodbye to the diapers and pull-ups that she wore for the first 6 years of her life. (Except she complains that we still put a pull-up on her at night...too much urine leaks out.)

And this is wear our little cutie proudly pulled down her skirt, so the lady could see her lovely Princess Belle panties :) We all had to laugh as we joined in her excitement over this milestone.

Of course, the tech congratulated her then politely reminded her that it's fine to show her doctors but better not others at school and stuff.

Here's the story of the first panties we gave her - Panties are Priceless

VCUG Study and Mermaid Magic

Adria was getting ready for a VCUG (voiding cystourethrogram) which is a study that uses an x-ray and contracting agent put into the bladder through a catheter to evaluate her bladder size and capacity. Not so fun...

For the VCUG and urodynamics study, the lady was kind enough to bring her a special Minnie Mouse hospital gown to wear. 

She liked the Minnie hospital gown she got to wear!

Adria was happy and very cooperative until she got on the X-ray table. The urodynamics study she had last year did not involve an X-ray, so she was very apprehensive. She was afraid of what was about to happen, and in truth it's not very pleasant. The test involves putting a catheter in both the urethra and rectum. Ick! But, catheters are an every day necessity for our sweet daughter. 

Adria got nervous after lying on the X-Ray table

Adria didn't remember the big machine above her from previous tests and was frightened!

So, the lady brought her an iPad with games to distract her. Winner! Adria found a MERMAID Dress-Up Game that she LOVED. She played this game for most of the next 45 minutes, while four doctors came in the room to participate in the study.

Those blessed mermaids kept her distracted and happy the whole time, while they pumped her little bladder full of fluid and took X-rays and videos. Once in a while, I had to take the iPad away for the machine to do its thing, so she wanted me to dress up mermaids too :)

Doctors evaluate Adria's bladder and kidneys during the VCUG.

The Results

After the studies, we met with the urological Nurse Practitioner, who has helped us sooo much with the Peristeen bowel management program that Adria has been on for the past six months. She is so kind and helpful, which is critical when teaching parents and kids techniques for emptying the child's bladder and bowel!!!

The great news is that Adria's bladder shape looks good and her kidneys are performing well. Very few changes since her last study a year ago and her bladder holds an acceptable amount of urine for her age.

However, the Nurse Practitioner did notice REFLUX on the right side. This means that some urine is traveling up into her kidney. She said that this is the first time they've seen it like this in Adria and will keep tracking it but not make any major changes now.

The Practice

Next item on the agenda was to discuss the topic of Adria taking more steps to learn to self-cath. I would love for her to be able to catheterize herself, yet none of us are excited about the process of her learning to do this.

The N.P. talked with Adria about steps she can take and things she can do to begin to help.

Then she pulled out a rubber model of female parts...yes, weird...but helpful.

Adria got to practice inserting a catheter into the "pee-pee" of this rubber mold. It worked pretty well, but she is still very hesitant to try this on herself. We'll get there. Baby steps.

We understand this well. Be persistent and consistent. She will get it in due time.

Last year she was wearing diapers and having regular poopy accidents, and this year she wears panties with very rare accidents. She is certainly making progress and we hope for continued improvement this year!

Adria did a good job at the hospital, so we went out for a special lunch to Bahama Breeze.

Another Hospital Visit

Adria's leg strength has greatly improved over the past six months! That's the official report from the doctors during our visit to A.I. duPont Hospital for Children on Tuesday.

Was it playing soccer perhaps? Or walking through the long school hallways? Or the weekly physical therapy sessions at school?

It's all working together to significantly improve Adria's strength and stamina, and her orthopedic doctor and assistants were quite impressed with the change  since our last visit in December. Adria walked and ran down the hospital hallway with and without her braces to show them her stuff.

We also discussed the pronation of Adria's feet and how her right foot especially seems to be turning outward more. Her doctor noted that the tendons on the outside of her feet are tight, like many children with spina bifida, and may need to be corrected with more than just leg braces (orthotics) in the future.

That means surgery. Thankfully it's not needed now, just likely at some point in the coming years. The exact type is yet to be determined, but the orthopedic doctor prefers to wait on surgery until the children are older. We've known about this possibility for a while, but have not discussed it much to this point.

I took this picture of Adria today without her braces on. As you can see, she was not too happy about posing for me.... She was actually complaining about her feet being in pain :(

It's incredible that she can even walk barefoot, but it does often cause her pain.

Adria's feet pronate outward without her braces on.

Adria has been extremely fortunate to have only had two surgeries at this point in her life. Many children born with spina bifida have more than a dozen surgeries in their youth. Surgeries to address the build up of fluid on the brain, problems with legs and hips, bowel and bladder issues, and much more. Even just yesterday, a boy we met in Indianapolis who is just a few months younger than Adria, went in for the Malone procedure and Mitrofanoff appendicovesicostomy, which are complex surgical procedures for children with severe bladder and bowel challenges.

While I do not like the prospect of Adria needing surgery in the future, I realize how fortunate she has been. Still, I pray that she will continue to walk and "run" the way she does and not require invasive surgeries.

We'll be traveling north again in July to meet with Adria's urologist at the same hospital and discuss how her life has changed since our last visit in December, when we learned the PERISTEEN procedure.

The physical therapist and other specialists at A.I. duPont Hospital check Adria's strength and leg movement.

All three of our children came along for the morning of doctor appointments on Tuesday.

Chubby Cheek Baby Boy :)

In spite of meeting with multiple doctors that morning, I think the most dramatic part of the day was taking care of the needs of three children in a public restroom!

Johanna who is potty-trained, Adria who requires catheterization, and Judah who had a nasty diaper blow-out. That was a rather time consuming ordeal, but at least Daddy was there to watch the other two while I took care of each child's needs one at a time. Shew!

We have been to the Children's Hospital many, many times since Adria's birth and will continue to do so at least twice a year for the foreseeable future. It's all just part of her life with a child who has special needs.

If you want to learn more about her past doctor's visits, here are a few posts to read:

• The Incredible Shunt Alternative
• Answer to Stinky Situation - Peristeen
• Learning to Catheterize a Toddler Girl
• Brothers with Spina Bifida
• Getting Wheels and Tests

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!

Third Time Around

Expected one month from today...a newborn baby boy! My baby. Our baby. God's child. For the third time, we are anticipating the arrival of a miraculous new life. What a blessing and privilege this is, and we do not take it for granted.

As we look forward to the arrival of what looks to be our first son, I find myself amused as I compare what it's like to be expecting a third child versus number one and number two. I would say the love a mother feels in her heart for the baby she carries does not lessen, but her emotions and planning for the baby certainly do change with each one.

Our first two babies greeting the Easter Bunny during Friday's Kite Festival near the beach.

Reading about Baby

With our first child, Adria, I was so excited about having a baby and all the mystery and newness that surrounded creating life. Even though I had the experience of my sister's stories with the two young children she had, it was an all new endeavor of learning and preparing for my baby. I immersed myself into reading What to Expect When You're Expecting and read that cover to cover, along with a couple other pregnancy books. (If you really know me, you'd know that it generally takes me a loooong time to get through a book, if I finish it at all, so it's impressive that I showed such dedication).

I will admit that it became much harder to read the books about what to expect from our newborn, after five months along when we found out that Adria had spina bifida. Suddenly, they did not seem as helpful or pertinent, yet I continued with an adjusted focus on reading about what to expect with spina bifida. That got overwhelming pretty quickly, and I returned to the generic baby books.

When our second daughter, Johanna, was on the way almost three years later, I wasn't even sure where those baby books were. We had moved twice since Adria's birth, so they were hidden somewhere in the shuffle. I did eventually find a couple, and review a few pages but now that I had a toddler to care for who was just learning to walk, there wasn't nearly as much time for reading.

This third time, those books are long gone. We've moved twice (again) since Johanna. And those books were given to other expectant mothers over the past three years. Now, I just downloaded a pregnancy app on my iPhone to help me keep track of how far along I am...otherwise I'd have no idea. But we are getting, so close it's easy to remember!

Naming Baby

I was not that girl who had baby names picked out for my children by the time I was age 10...or 20. Naming our babies has been tough! Still, we were pretty set on Adria's name a few months before she was born. Her name, of course, is the female form of her Daddy's name, and she shares his initials. She had his heart, right from the start ;)

When it came time to name baby 2 and we knew she was a girl, we decided to do a name similar to Mommy's name and use my initials. Johanna means "Gift from God" and we truly felt that, as she came to us soon after we had experienced a miscarriage.

We love the opportunity to pick out a boy name this third time around, but it has not been easy either. We are 90% sure on his name at this point, but....you'll have to wait until he's born to find that out! As we did with the girls' names, we'll keep this a surprise until he arrives. It's a good way to keep outside opinions to a minimum ;)

Do you like our fun T-shirts? Mine is new, but Adrian has been able to wear "The Impregnator" shirt for all three babies ;)

Boby Stuff

In truth, I feel very fortunate when it comes to pregnancy. Having wide hips and a long torso ends up being a pretty good combination for baby carrying! That said, there are some obvious differences this third time around. My biggest pregnancy issues with the girls were the obnoxious burping and gas along with ditsy pregnancy brain...you know what I mean.

But this little guy...For starters, I weigh more now than I ever did with either of the girls, and I still have a month to go! I've said it before, and I'll say it again - I want to eat all the time. My friends with boys claim it was this way for them too. My belly is definitely protruding more than it did with the girls. And the heartburn has been awful and regular. I so do not remember that. Plus, I got bad winter colds that lasted for weeks on end, leaving my stomach in agony to the point of tears from all the coughing. Sometimes I feared it would never stop. And now a cold is starting to return...I am not happy about this.

But all that said, I feel very good in general and am perfectly content for baby to wait until his due date of May 4 to arrive. I've got lots still to do at home and work to prepare!

Momma's belly is looking pretty large now with a month to go!

Birth Plan

I laugh when I read on-line guides to "creating your birth plan" because in my experience and so many others, nothing goes as planned when it's time to deliver your baby.

Adria was scheduled to be delivered via C-section on Sept. 2 to lessen the risk of damaging her spina bifida sack. However, a test showed that her lungs were not quite ready for delivery so we played a waiting game for a week, and I ultimately delivered her via C-section on Sept. 8 with a doctor I had never met. 

With Johanna, my plan was attempt a more tradition delivery, also know as VBAC (Vaginal Birth After C-section). Since I had never gone into labor or experienced this with Adria, I worked with a doula  recommended by a friend to provide me with advice and planning. Ultimately, my water broke in Walmart (read more on that incident HERE) and I had to go straight to the hospital and be put on monitors. I had a very supportive OB in Indianapolis, and I was still able to deliver vaginally but it was almost 16 hours later. They had to give me Pitocin to keep my labor progressing, and when they did that I asked for the epidural. I have to admit, I am a fan of the epidural...it has drawbacks but it enabled me to "rest" during those later hours of labor and then focus during the 45 minutes of pushing it took to deliver Jo-Jo.

This third time, I've had to adjust my plans as our local hospital in southern Delaware does not generally perform VBAC deliveries, even though I am a good candidate for another one. Halfway through pregnancy, I changed to a new OB office and plan to deliver at the Dover hospital. It was actually a tough decision (Read more at WHERE SHOULD I DELIVER MY BABY). Honestly, my biggest plan this time is to make sure I pack a bag for the hospital soon, so that Adrian doesn't have to flounder and figure out what I need like last time. Then, I'll hope and pray for a safe and fairly short labor and delivery with a healthy baby at the end.... and I'll probably get that epidural again. Not ashamed.

Post Baby Awareness 

One of the biggest differences this third time is the awareness of what comes AFTER the baby arrives. As much as I'm looking forward to cuddling and snuggling with a little bundle of sweetness, I also know what is coming. I remember all the baby fussiness and lack of sleep, particularly in the first few weeks. Then, there's all the mommy "discharge" and body aches and pains after delivery. A friend recently asked me if was easier to recover from the C-section or vaginal birth. In truth, they were both so different that it's hard to say, but if I had to pick one...I'd say the vaginal birth was a tougher recovery.

Of course, my situation was unique, as I had more time to recover with Adria. For three days after her birth, I laid in a hospital room without her as she was 20 minutes away in a children's hospital recovering from her back closure surgery...It was terrible to be apart from my newborn baby. But it did give me the chance to rest and rebuild strength for the next two weeks we would spend with her in the NICU. 

Our experience with Johanna was much different. She arrived at 4:44 a.m. on a Friday, and we headed home on Saturday night. In theory, that's great. In reality, it was actually somewhat harder to be at home that first week than in the NICU because we did not have the support of all those doctors and nurses 24/7. 

And let's not forget the milk coming in and figuring how to get this baby to latch onto Mommy and drink. I think many young moms are not prepared for the initial challenge of breast-feeding and the pain involved. But my advice is to hang in there if you can and keep trying! It will get better, and if it doesn't work for you and baby, don't feel guilty.

Final Thoughts

There's so much more I could say about the differences this third time around, but at the end of the day, it is true that this baby will get less of my attention than the first. There's no way around it. I have two inquisitive little girls that will continue to demand my time as well. And I know, it's going to get really tough to balance all their needs, but this Baby is what we wanted and prayed for. He is already deeply loved by everyone in our family, and we look forward to meeting him in about a month!

Oh yeah, and we worked on getting the nursery ready today, so I'm feeling more prepared :)

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:

2 Brothers with Spina Bifida

The first time I met this precious family was in the waiting room of Riley Children's Hospital in Indianapolis.

I remember it so well. The couple was our age, and she was beautiful with a precious baby bump growing. Close by them was an adorable little boy about Adria's age. He had the biggest smile and energetic personality, and he was cruising around the waiting area in his little walker.

Dara and James with their handsome boys last fall.

I was quite sure that he too had spina bifida as I noticed his leg braces (AFOs), and we were all waiting together for the Myelomeningocele clinic after all.

It was amazing to see him, as this was the first time we had ever met a toddler who was Adria's age with spina bifida. This came at a critical time for us as Adria was over two years old, and her physical therapist had been working with her for months on using a walker and getting around more independently that way. She was just struggling to get the hang of it, but we so desperately wanted to see her take more steps using the walker. And here was this little guy who seemed to have figured it out.

Just a few minutes of waiting, and I couldn't help myself. I had to say hello and learn more about this incredible little boy who so confidently made his way around. Plus, we were still new to Indianapolis and I was open to making friends whenever possible.

I said hello to his mother, Dara. We talked for a few minutes, and it's hard to express how refreshing it was to talk face to face with another mother who had experienced so many similar things with her child as we had. Her son was just a few months younger than Adria. Their story was similar yet different, as she told me that it was a surprise to them when their son was born with spina bifida...the ultrasound had not revealed it like it had for us. I could only imagine how hard this had been for them. But she talked about his progress and different experiences. Her eyes were full of love, but there was something else there...a look of exhaustion or even fear?

Soon it became clear why. They had just learned that the baby she was carrying was another boy...and he too had the severe form of spina bifida, myelomeningocele.  My heart went out to her. I think I gave her a hug. I hope I did.

It had been such an involved, wild ride caring for Adria's needs those first two years of her life, and I knew that much was yet to come. How hard would it be to manage all the therapies, doctor appointments, medical bills and special needs for TWO young children with spina bifida???

Four years later, I can tell you that it has been difficult for this family. We were able to see them again a couple times while we still lived in Indianapolis and meet their second little boy. And we have remained in contact through Facebook, where I can pray with them as the boys face setbacks and rejoice with them in their progress.

Their boys have been through so much, and it seems the youngest especially has needed multiple surgeries and faced countless challenges.

Through it all, I see this couple loving their boys unconditionally and constantly fighting for them to get the best care and opportunities. Honestly, it can be very difficult when you are a hard-working middle class American family. The parents both work and like us, make just enough money to not qualify for much of the government assistance that exists for children with special needs. This leaves them and us constantly battling with health insurance to gain access to medical equipment and coverage for critical services/surgeries that can have a huge impact on our children's well-being. The annual out of pocket costs can be...daunting.

Dara just posted the other day, that they are finally being able to meet with officials regarding a special medical waiver they applied for years ago. Praying this goes well for them!

In all these experiences, this family has gained a unique perspective on what really matters in life which also comes with a sense of exasperation over complaints of petty things. I feel like I can really relate sometimes.

James and Dara with their boys in 2013

Recently, Dara shared her heart in an on-line post that comes from a woman who has been there...through the really, really tough times. She is a nurse and has witnessed many others battling their own issues. I asked her if I could share this with you, so here is some food for thought from a Mom who knows what it is to love deeply and survive in the struggle:

In Dara's Words

Coming from a different perspective, in which I've learned to always think about the other end before I say something: 

1. All of this fad on social media with breast feeding vs formula..please be cognitive of those mothers, such as myself, who weren't able to breast feed or pump to feed my children thru an NG or OG tube because of stress and no appetite and constant worrying of the unknown with living day by day regarding the health of my children in NICU...so does that make me or others bad mothers for choices or circumstances? Stop saying breast is better...good for you, but other mothers don't need that blasted in their face. 

2. When you say you've been blessed with healthy children and God is good, think about how it feels for parents to hear that who have children with special needs or health problems..is that implying He wasn't good to us? Talk about salt in an open wound. Yes, we are too blessed. 

3. Don't say something is "retarded"...seriously, think about if you personally experienced a family member who was cognitively impaired or delayed. You're missing a sensitivity chip. 

4. Before you speak and say such things, that your life is so bad or a situation is so bad you could shoot yourself or kill yourself, be a little sensitive because there are those who have personally experienced that in their families. 

5. I won't even go there with "short bus" comments because you're just making an ass of yourself to even make a comment regarding that. 

6. Think about those struggle to get pregnant because you could be complaining about how bad it feels or horrible feeling being 9 months pregnant. I'm sure those who can't have children would love to feel that and appreciate every moment..what if you're complaining to that female who can't get pregnant. Can you imagine how they feel?

I could go on and on...I'm just saying, try to think beyond the box...unless you prefer to be content in your own. Maybe I just care too much about others, which I've learned there's more to life than just my own.

I'm just hoping this will help people see from another point of view that I have been guilty of not seeing and people have helped bring to my attention, as well as my own experiences. Don't get me wrong, I do get offended easily and pissed off initially on certain things because that's my protective motherly instinct, but I have to step back and realize they don't even know what they're saying. It's all just something to think about...

Dara's youngest son recently making progress with the Gate-Trainer.

An Answer to Her Stinky Situation? PERISTEEN

Wearing diapers to Kindergarten is embarrassing. Most six year old girls have been out of them for years, but that has not been an option for Adria. And it bothers her.

Just last week, she came home from school telling me a story about how her skirt had gotten loose on the playground and was falling down, revealing her diaper. Adria said one of her friends was chasing her around, trying to grab it and that was not nice! She did not cry about it, but I could tell she did not like it. (Neither did I!)

And then there's her little sister Johanna, who just turned three but has been out of diapers for about six months now. Every day, Jo-Jo gets to put on her Disney princess or Tinkerbell panties, and Adria must wear her "boring diapers" as she says. I think big sister is pretty jealous of little sister.

But we fear Adria's issues would be far worse if we put her in panties, even with a pad. Because of her spina bifida and the incomplete formation of the nerves in her lower spine while she was growing in Mommy's belly, Adria does not have the ability to control her bowel and bladder. In other words, her brain does not get the message when she needs to use the potty, nor can her body control "holding it" or pushing it out.

Every day around lunch time, Adria goes to her school nurse who empties her bladder with a catheter. And there are days that Adria comes home from school with stinky poo in her diaper. In spite of our best efforts to regulate this part of her life, it's an on-going struggle.

Summer 2013, I wrote about her STINKY SITUATION and how we were getting into a routine to help that. We've made progress since then, but it is so inconsistent and we are nowhere near ready to get rid of her diapers.

In June this year, Adria's urologist introduced us to a new bowel program called PERISTEEN. This was during a very FULL DAY OF DOCTOR'S VISITS at A.I. duPont Hospital for Children, so they sent us home with information to look into and decide if we'd like to try it.

What is Peristeen?

We had never heard of Peristeen before. It's a type of enema system or "bowel irrigation" that is used to "manage fecal incontinence and chronic constipation." Peristeen has actually been around in Europe for many years but has only been approved for use in the U.S. over the last two years.  Earlier this year our local children's hospital became among the few hospitals nationwide that is trained and approved to offer this system. Yeah!

In just the first few months of offering the Peristeen to other children who have bowel issues similar to Adria, there were 10 families from just that hospital who were already experiencing huge benefits from this program.

Peristeen is produced by Coloplast, the same company that supplies us with Adria's catheters for emptying her bladder. If you'd like to learn more about the program, Coloplast has an informative video. I especially like the narrator's formal English accent, as she describes such a sensitive process :)

How do we get Peristeen?

After learning about the program, we were interested in trying it for Adria. Yes, it's a bit complicated, but if it means that she can go through the day without having a poopy diaper, then it's worth it.

Unfortunately, it's not as easy as saying "Let's try it!" Because Peristeen is so new, some health insurance companies do not know how to code it and will quickly deny coverage. This happened to us. Without insurance, this program costs about $1,000 out of pocket a month!

And thus began a nearly six month battle. Fortunately, we have a great team of doctors at DuPont Hospital, and Susan Myers specifically went to bat for us. There was a lot of back and forth among us, insurance, the doctors and the supplier for Peristeen.

Finally...two weeks ago I received the call from Dr. Myers that she got our insurance to approve covering the Peristeen system!!!

YEAH! We felt like this was a huge answer to our prayers.

How do we use Peristeen?

With insurance approval, our Peristeen system soon arrived in the mail. However, before we could begin the routine, we would need official training from a medical professional.

That came this past Tuesday during our semi-annual visit to the children's hospital for the spinal dysfunction clinic. After a full morning of Adria's doctor appointments, we spent nearly two hours reviewing the procedure with Susan Myers and trying it out on Adria. (Tuesday was also Johanna's 3rd birthday...so that's not exactly how I pictured spending the day, but it was worth it to help Adria.)

Adria chilling in her wheelchair after lunch, waiting for our meeting about Peristeen

The new wing of A.I. duPont Hospital has an impressive 6-story atrium, a great new cafeteria,
and this colorful Discovery wall that changes scenes.

Without getting too disgusting with details, I'll just say... the Peristeen definitely emptied her bowels MUCH BETTER than anything we have tried before!

As we get started, we will need to use the Peristeen every night on Adria. Eventually, we may be able to reduce it to every other night.

So every night this week, my husband and I have worked together to set up the Peristeen system and do the routine with Adria. She sits on the potty for 30 minutes, being entertained by the iPhone or iPad, while her bowels empty. She has complained of some cramping and strange sensations, but overall it's going really well.

I document the nightly details in the "Bowel Emptying Diary" provided with the Peristeen kit. That's fun...

At the hospital Adria was very hesitant to try this new thing, but when Daddy said it could mean that she would be able to wear panties instead of diapers, she got excited and cooperated so well. What a trooper!

And that's what Adria wants for Christmas...her own pack of panties...that's what she told me today :)

This is a video I took at the hospital to help remember the exact instructions we received during our visit...



So...next time you have to GO #1 or #2 take a moment to give thanks for this ability. We all take it for granted, but it's not so easy a task for some people, especially many of those living with spina bifida.

If you or your child struggles with bowel management, this may be a program to strongly consider. We'll keep you posted on how it's working for Adria, but it's looking promising so far!

For now, it's just past 7:30 p.m. so I need to get off the computer and do her potty time!