Blessings visible with a day at the Childrens Hospital

Today I was reminded again how blessed we are with our little Adria and how different life could be.

We packed up the girls early and were on the road by 8 a.m. to get to A.I. DuPont Hospital for Children by 9:30 a.m. It was time for Adria's bi-annual visit with various doctors in the "Spinal Dysfunction Clinic." Because spina bifida impacts so many different areas of the body, the hospital coordinates times when the various specialist come together in one area to see their patients with similar challenges. It works well but it means that we sit in room for a couple hours and typically see at least seven doctors, physician's assistants, physical therapists, nurses, etc.

As we sat in the Rainbow module waiting area before her appointments, I saw a young man in a wheelchair and his father. He had large shoulders and a thicker mid-section with short, lifeless legs hidden under baggy pants yet he was aware and cognitive, all tell-tale signs of spina bifida.

I said hello and introduced myself asking his name and what grade he was in. Ninth grade...he just started high school. That's a rough time for anyone, but I couldn't help but think how much more difficult it is for this young man. I almost felt guilty saying that my daughter has spina bifida too, as she went stomping past to go look at the train set.

His father asked what level she had, meaning where was it located on her spine. I said the L-4/L-5 area. He seemed surprised saying that was the same as his son's spina bifida level. He asked, "It wasn't myelomeningocele was it?" There's a question I almost never hear.

"Yes, she was born with myelomeningocele with her spinal cord and a sac protruding from her back," I replied. Truly, I think he was almost in shock. He said it's amazing how different she can be with the same level of spina bifida. Yes it is, I thought.

We chatted for a few more minutes about things like catheterizing, bowel management, shunts, and surgeries. All things we understand and experience yet very rarely have the opportunity to talk with other people who know exactly what we mean. And then Adria was called back.

Adria did great. It's wonderful that she can now stand barefoot (with mom's help) for her height to be measured. She's 3' 2" tall and almost 42 lbs. That's pretty short for her age, but you'd never know without other kids around.

She showed off fairly well for the doctors, and they were pleased with her progress saying she looks great. The best thing we had to share was that the bowel program we have in place now seems to be working to keep Adria's diapers clean most of the time. This was a big concern of ours during our last appointment with the clinic in May. Yeah for progress! But they were quick to warn that this is ever changing with their spina bifida kids, so be prepared...

They also asked how easily Adria tires when walking. She can go fairly far, about 1/4 mile, but definitely couldn't make it through a walk at the mall.  They suggested we might start thinking about getting her fitted for a wheelchair at her next visit...it can take 6-8 months for one to come in after ordering. This discussion was minorly alarming to me because I've been so pleased with Adria's progress, I just didn't think we'd be talking about a wheelchair. The doctor assured me that many of the childrens' wheelchairs collect dust and are only on-hand for major outings like a trip to Disney World, once they've outgrown a stroller. We'll see I guess. I'm in no rush for this. We still have a jogging stroller and a double stroller that work just fine when needed.

But as I pondered the possibility of a stroller, I thought about that young man I met earlier. For him there was never any question, he would need a wheelchair. He has almost no feeling in his legs. He has the same "birth defect" at the same level as my daughter. He is a special boy and I hope and pray the best for him.

I just realized how very blessed Adria is. She is a little miracle. She is amazing.

Adria helping to put on her braces

Johanna being like big sissy and taking her shoes off...

The new hospital addition is coming along nicely! Can't wait to see it.

How I spell Thanksgiving

Thanksgiving has come and gone already, for that matter so has November. Throughout this month many of you on social media have posted daily about the things you are thankful for, and it's been so enjoyable to experience this on-going attitude of gratitude.

I did not exactly join in, but that is not for a shortage of blessings. This Thanksgiving I had much to be thankful for, including the first time in a few years where we spent the day enjoying food and visiting with both sides of our family. We headed to Adrian's parents in the morning and early afternoon for a delicious meal, and enjoyed the time with four of the eight Seely children. Then to my parents, just 15 minutes away, for dessert and games with all of my siblings and five of our cousins and their families (I have over 20 cousins!). My mom puts on a big spread for about 30+ people most years.

We both are blessed with very large families, but there are many members we have not seen in years. We think of them across the miles or recovering in hospitals during this time when families come together.

It reminds me of two years ago when we did not spend Thanksgiving with our families. In 2011 we lived in Indiana and I was nine months pregnant with Johanna, so we weren't doing any major travel. Adrian's parents and sister had driven out to visit a week before for his birthday. I had prepared an early Thanksgiving meal, that unfortunately we weren't able to enjoy very much due to a bad stomach virus spread to every one of us except Adrian. We were sick and miserable :( I hope we can avoid ever having that again!

My parents were waiting to come out until closer to Johanna's birth, so it was a strange Thanksgiving with no family around. It made the miles seem so long. Fortunately, we did have some good friends and neighbors in Indiana who invited us to join with their family for a delicious meal. In fact, we enjoyed our Thanksgiving dinner in a home that I had sold them!

I am thankful, very thankful for what we have this year. On this final day of November, I'm going to share a THANKSGIVING list that's likely different than what you posted every day but these are some things that mean so much to us.

T IME - We so often lament that time passes too fast, but there are seasons of life when you are thankful that the Time passed quickly and you are further removed from the thing that afflicted you.
         
H EALING - As we are now almost nine months from Adrian's last grand mal seizure, we are thankful for the Healing that we are experiencing.

A DVENTURES - Whether it's a few days away with my husband or moving twice to different states in one year, we have learned to love the Adventure.

N EMOURS - This is the health network that runs A.I. DuPont Hospital for Children and our local pediatrician's office. Nemours offered the best options for our precious daughter's surgeries as a newborn, and now they continue to provide exceptional care as she thrives with spina bifida.

K IDS - Our greatest treasures for sure are these two little giggly girls, and the innocence of Kids is a thing to be greatly appreciated.

S IMPLICITY - Life is so often complicated and complex that when we can find unexpected areas for simplicity, it can be wonderful...Like a much smaller home to clean.

G OLF - We are talking about Disc Golf here, sometimes called Frisbee golf, and though you may not know what it is, my husband loves it and it has proven to be a great outlet for him this summer and fall.

I NTEREST RATES - For the last couple years Interest rates have been historically low, which has made home buying more affordable for people, however they've been creeping up higher this year. For me, this has been a great thing as it's been a major factor in the improved housing market and making my job a little easier.

V IMPAT - This is a fairly new medication to treat seizures and it's the one that finally seems to be working for Adrian after trying several others. I'm also thankful we only pay $40 a month for Vimpat because it's over $1200 a month without insurance!

I EP - An acronym for Individualized Education Program, this is what the state develops for children displaying any type of developmental delay. The IEP enables Adria to get half day pre-school five days a week and a bus ride to and from school for no cost to me (other than the state taxes I pay...)

N IGHTTIME - The most wonderful time of day is Night-time, when work is done and I get to be with my little family. Once we finish our nightly routine, I often try to sneak in some time writing. 

G RANDPARENTS - Easily one of the greatest blessings for us and our children is their Grandparents. We now live close to all four of them again and so appreciate their constant support and involvement in the lives of our girls.

That is how I spell THANKSGIVING!

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!

Time for your Check-up. Love my little shortie!

Wow, this is rare. Writing while enjoying the breeze on my back porch in the middle of the afternoon. Ahhh, savor this moment.

It won't last long. Johanna is napping, Adria will get off the bus in 45 min., and Daddy just walked out here after a brief nap, that I apparently interrupted while getting the computer. Oops.

We had a busy morning and were up and out of the house by 7:30 a.m. for doctor appointments.

Daddy had a check-up with his local primary care physician at 8:15 a.m. and Adria had her 5 year old well visit at 9:50 with the pediatrician at Nemours duPont Pediatrics, both in Seaford.

We even had time to squeeze in a "healthy" breakfast at Dunkin' Donuts.

Daddy's appointment was gloriously mundane, aside from the sting of a flu shot. No seizures since last visit, blood pressure low, heart rate good, and he even lost a few pounds.

Ade went to Dr. Victor Dejesus before we left Delaware in 2010, so he was there when the seizures first started and it's been an easy transition since our return to the state five months ago. Dejesus is also quite impressed with the clarity and thoroughness of the notes from our visits with Dr. Litt, the neurologist at Penn Epilepsy Center.

That's always good to hear. Finding a good doctor can be like trying to find a good mechanic, you take a risk and may not know he's bad until something gets really screwed up! Some of you know what I'm talking about.

With 40 minutes to kill before Adria's appointment, we made the mistake of going into Wal-Mart and emerged with a much emptier bank account. I tell ya, those diaper boxes will get you! $85 in just diapers and wipes for the girls. Their little bottoms are picky and tend to be happiest with Huggies brand diapers, which I'm quite sure are the most expensive on the shelves. But, I digress.

On the way to Adria's visit we sang, "We've gotta check your ears, check your eyes, find out how much you've grown. Time for your Check-up!" How many of you mom's out there are loving the new Disney Junior series Doc McStuffins? She's a cute little pre-school doctor who operates on toys. My girls are big fans, and it's especially helpful if you spend a lot of time with doctors.

Adria wearing the Doc McStuffins outfit that Aunt Leona gave her for her birthday.

At the doctor's they took all of Adria's vitals with her shoes and braces on, since she can't really stand still on a scale without them.

• Height = 38 1/4 in. (3' 2.25")
• Weight = 41 lbs. 8 oz.
• Blood Pressure = 76/56
• Eyes = 20/30

She's healthy and doing well with her weight in the 65th percentile for her age and her height less than 1 percentile. Basically, our sweetheart is a little short with some extra cushioning :)

That's no surprise, as it is fairly typical for children with spina bifida to be shorter than their peers due to the lack of muscle definition in their lower limbs wich can hinder growth somewhat. Also, their decreased mobility means that they are not running around as much as other children and burning off as many calories. But, we do try to account for all of this and give Adria a balanced diet and plenty of activity.

Before the appointment, Adria was quite worried that she was going to have to get a shot today. I really wasn't sure. I hate to admit this, but with all the moving and changing doctors, and my lack of organization skills, I did not know if she was up to date on the immunizations that they require for school or pre-K. Turns out that she was not. Sorry my little darling.

It was just one shot with two immunizations in it, but boy did she scream. Ugh, this is so not fun for any of us. Adria asked, "Mom, did you have shots when you were my age?" She seemed comforted by the fact that I did and that Daddy got a shot today too.

Before we left we were talking with her pediatrician about how much she likes pre-school and how her bus drivers enjoy her chattiness on the bus ride. Then Dr. Cole stated almost matter-of-factly, "Who doesn't love her? She's fabulous!"

I couldn't agree more. Now, I had better go. Johanna woke up and wants to play on the computer and big sister's bus should be here any minute.

Adria's First Week of Life Outside Mommy's Tummy

Last Sunday we celebrated Adria's fifth birthday, and I shared a blog about my thoughts on the day she was born.

Today, a week later, I'm posting the email that I had sent out to friends and family from the NICU at A.I. DuPont Hospital the week after her birth. Some of you might remember reading this five years ago!

I found that the easiest way for me to tell her story, would be to write it from her perspective. Through the innocent eyes and voice of a newborn. Who knows what she was actually thinking, but I decided it was something like this...

Day old Baby Adria before her back surgery on Sept. 9, 2008

Baby girl after her spina bifida closure surgery.

 

Adria Mychelle Seely… My First Week of Life Outside Mommy’s Tummy

(as told through my mommy Julleanna Seely, since I’m not much of a writer yet J)

On Monday I celebrated my one week birthday! For the first time I was able to lie on my back that day and be held by my parents without having a hundred wires plugged in…ok, it was actually only 4 or 5 wires but still they cramp my style.  

My arrival into the world came with a bit of fanfare, having over a dozen doctors and nurses in the delivery room – half for mommy and half for me. I was delivered at Christiana Hospital on Sept. 8 at 3:58 p.m., a beautiful, healthy baby girl weighing 6 lbs. 15 oz. and measuring 19 inches long. So many doctors were there because I was born with spina bifida, a birth defect that occurs when a baby’s spine fails to close during the early months of pregnancy.*

A few hours later, I was transferred to the NICU (Neonatal Intensive Care Unit)  at A.I. duPont Children’s Hospital in Wilmington. On Tuesday afternoon a pediatric neurosurgeon performed surgery to remove the spina bifida sac on my lower back and put my spinal cord back in place. Thankfully, the location on my back is relatively low which means that I have a good chance of being able to walk. In order for my back to heal, I had to lie on my stomach or side for the first week, but now I’m healing so well that I can be held or lie on my back!

Daddy has been here with me every day, but I did not get to see Mommy again until Thursday morning; she had to stay at the other hospital to recover from her c-section. When I saw her for the first time since my birth, she reached into my little incubator hospital bed, and I wrapped my tiny hand around her finger. She cried a lot when I did that.

So far, doctors seem impressed with my recovery and the amount of movement in my legs. I really like to kick and squirm a lot, which makes Mommy and Daddy very happy. The doctors think the only place I don’t have much sensation is the bottom of my feet, and one nurse said I have more movement than any other baby with spina bifida that she’s seen in her seven years working in the NICU. Mommy says that I’m doing so well because so many people from all over are praying for me.      

While at the hospital, my parents help the nurses give me baths, change my diapers, and feed me. They love to sit and watch me, hold me and kiss me ‘cause I am crazy adorable with my full head of dark brown hair and little tiny baby features that are so perfect. They really hope to take me home soon, and I can’t wait to see my bedroom and try on all my pretty outfits. The main thing we are waiting on is an MRI that I am scheduled to have on Thursday to look at the fluid around my brain. A majority of babies with spina bifida have hydrocephalus and need additional surgery to remove the fluid. I am really hoping that the results from the MRI are good, and I will not need that surgery.

So, thank you so much for praying for me and I hope that you will continue to do so. I will need to have many more tests and physical therapy over the next months and years of my life and there are many unknowns about some of the physical challenges I will face, but I am a very active little girl with a good appetite and a strong cry so I think I will continue to do well.

With much love and a few hiccups, cries and coos,

Adria Mychelle Seely

*Spina Bifida:  Also known as Myelomeningocele, occurs in about 7 out of every 10,000 births. There is no known cause but because it effects the development of the spinal cord, there are a variety of challenges that can arise. This includes various levels of paralysis, mainly in the legs; bowel and bladder problems; hydrocephalus which is excess fluid around the brain; and sometimes learning challenges. Most children with spina bifida have nerve damage that affects their ability to walk, and often require the use of leg braces or a wheelchair. No two cases of Spina Bifida are ever the same.

Daddy gets to feed baby Adria

 

 Mommy sees her baby for the first time after 4 days apart

5 Years Ago today we met our first Princess

Happy 5th Birthday, Adria!

After my scheduled Sept. 2 C-section had been delayed for baby's lungs to mature, we anxiously awaited word from the doctor on a new time for the operation. They found a spot to squeeze me into the busy Operating Room schedule at Christina Hospital and we were set to go for Monday, Sept. 8 at 3:30 p.m.

Pregnant mommy outside the maternity entrance to Christiana Hospital the day Adria was born!

We had kept her name a secret until the moment of her birth - 3:58 p.m. Welcome baby Adria Mychelle!

Here is my personal account of that day from my journal:

9/9/08
She came out with lots of dark hair and very purple with very cute little whimpers. I was lying on my back, arms stretched out perpendicular to my body on either side with almost no feeling from my chest down and an oxygen mask around my nose and mouth. Adrian sat close by in the OR, touching me reassuringly as about 7 doctors and nurses poked, prodded, cut and sewed me to deliver out little girl.

Once out, she was quickly put into the hands of about 5 neonatologists (high risk pediatricians) who cleaned her up and got all the vital stats before taking her back to the NICU.

Our little girl is a beautiful 6 lbs. 15 oz., 19 in. long daughter.

Naturally, I couldn't hold back the emotion as I saw my baby girl for the first time. Tears continued to fill my eyes as I watched them work on her - How amazing this new life that formed inside me!

They wheeled her close so I could get a better look before they took her away, but I did not get to touch her. It was not until almost 9 p.m. that night before I saw her again.

After I spent several hours dozing in the recovery room and saw both my parents and Ade's parents, Adria was wheeled back into my room. Daddy had been by her side for a while in the NICU, and he was with her when she came in, lying on a baby-sized incubator bed, getting ready to be transported to AI DuPont Hospital.

She was so adorable and innocent lying there on her stomach with several tubes and IVs. Again tears flooded my eyes as I spoke to her and had a chance to reach out and touch her soft skin and hair, barely taking notice of the covered leision on her back.

As soon as I started talking, she began to wail... A precious, desperate cry that said, "Mommy, I know that's you. Please hold me, protect me, feed me!" And oh how badly I wanted to!

We had a few minutes together touching and crying before she had to go. Goodbye my sweet, little one.

Right now, she is at AI DuPont under the skilled hand of pediatric neurosurgeon Dr. Benjamin Warf. He is going to perform the spina bifida closure surgery on her. Daddy was with her most of the day, talking to her and trying to comfort her. The doctors seem very impressed with how strong and spirited she is. They believe that she will do very well.

I have remained at Christiana Hospital today for my C-section recovery...(I'll spare you the personal details here) Mom and Dad have been here with me a lot, and I've really appreciated Mom's help.

Ade recently came back and brought with him a cute picture of Adria, taken at AI which a nurse decked up just for me!

That picture was so important to me over the next few days as I lay in a tiny hospital room without my baby. Christiana Hospital graciously gave me one of their only personal maternity rooms, so I would not have to endure sharing a room with another mom who was able to be with her newborn baby. It was not until four days later that I got to see Adria again.

I had to recover and she had to have her surgery. I never actually got a good look at her spina bifida sac on her lower back. From the moment she was delivered, they put a sterile bag around her lower body to prevent any further damage to the exposed spinal cord.

That's ok though, it was only a part of her life outside mommy for one day and while it greatly impacts her life, my hope is that it will not define her life.

As she turns 5 today, I realize how incredibly blessed we are to have this little treasure in our lives. She speaks very well, walks like a champ and returns love with kisses and hugs. I know many parents with special needs children never realize some of these life milestones that other parents may take for granted.

I just have to give praise for our many blessings and thank you for your prayers.

Adria, mommy and daddy love you so very, very much!

She was scheduled to be born today, Sept. 2

The clock has not yet hit 4:00 a.m. as I write on this Labor Day. While I was lying awake in bed and trying to get back to sleep, I realized that five years ago today I was having trouble sleeping that morning too.

My husband and I were staying in a hotel in Newark, Del. anticipating that we would meet our precious little girl for the first time that Sept. 2 day.

We had been on a pretty wild ride that summer since first learning of Adria's spina bifida diagnosis when I was five months pregnant. Pictures show that it was a fun summer of celebrating my little brother's high school graduation, decorating the nursery, enjoying family cook-outs at my aunt's pool, and sailing on the Chesapeake Bay for the first time.

Celebrating with my siblings in summer 2008 just after my youngest brother's high school graduation, which was just a few weeks after learning about Adria's spina bifida.

Sailboat ride on the Chesapeake with Ade, two days before my scheduled C-section on Sept. 2. Yes, the people on the boat were a little nervous once I told them how soon I was due!

It was also a summer packed full of doctors visits and regular sonograms checking our baby's progress. A summer of educating ourselves on what to expect in this next phase of life. I had to look further than the What to Expect When You're Expecting and The Girlfriends Guide to Pregnancy books I had been reading to learn what I could about how to care for a baby with myelomeningocele spina bifida. I tried to prepare myself for what her life could be, but the unknowns were so vast.

Most of our education was gained from meeting with multiple doctors in various specialties - from high risk OB/GYNs to pediatric Neurosurgeons, Urologists, Physical Therapists, Orthopedics and more.

We transferred my care from the Annapolis maternal fetal medicine specialist to Delaware Center for Maternal and Fetal Medicine, part of Christiana Care at the Newark campus. We made this change largely for insurance reasons, because it was better to stay in state, but also because of the center's great reputation and close proximity to A.I. DuPont Children's Hospital in Wilmington, Del.

It was during this time when we learned that only six babies had been born in Delaware with spina bifida the previous year and fewer than that so far in 2008.

My doctor at DCMFM was Philip Shlossman, M.D., who we both liked because of his laid-back and often humorous bedside manner. He was critical in helping us navigate many major decisions we faced.

One major recommendation he made was that our baby girl be delivered with a scheduled C-section. Not because of any complications I was having, but this would be best to reduce and prevent further damage to the spina bifida sac and spinal cord that protruded from her lower back. The C-section would be scheduled several weeks before my actual Sept. 22 due date in order to avoid me going into labor and to ensure all the doctors needed for this special delivery would be available.

This would be a specialized team both at Christiana Hospital and A.I. DuPont Children's Hospital. The plan was for Adria to be delivered at Christiana and shortly thereafter be transferred 20 minutes up the road to the Children's hospital for her spina bifida closure surgery.

We were nervous that Sept. 2 morning but also very excited to meet our firstborn.

However, because my due date was still several weeks away, Dr. Shlossman performed an amniocentesis on me at 7:00 a.m. to test if our baby's lung were fully mature for the early delivery. They stuck a freaky big needle in my belly to get a sample of the amniotic fluid, and then we waited for what seemed an eternity but was really a couple hours for the test results.

Results came in, and baby's lungs were not quite ready... We would go home and they'd let us know when to reschedule.

Honestly, we were very disappointed. Our anticipation of meeting her was so high, and we had been planning on this date for months. I know most mom's don't get to "plan" their delivery, but still I was ready to meet her!

That night, I wrote this in my journal:

"It may seem odd to say this, but I was really hoping to be lying in a hospital bed tonight. My little baby girl was scheduled to be delivered today via C-section. Ade and I had prepared ourselves, got the house ready, and packed our bags for the next week or more expecting to be up in Wilmington while she recovered from her Spina Bifida closure surgery... Though we know that's best for her to wait, the news was hard to take after preparing ourselves for her arrival today. I  love feeling her inside me, but I am very much ready to see and hold her."

That's okay though, God already had her birthday planned and it was not for that day.

My mom took this photo the morning of Sept. 2, 2008 before we went in the hospital. I thought it would be my last pregnant photo with Adria, but I ended up having another week to get a few more.