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

The MRI and EEG results are in...and a grand Philly lunch

This summer we have traveled north about 1.5 hrs to Wilmington and Philadelphia at least five times to doctor appointments for both Adria and Daddy.

Now that we have moved back to Lower Slower Delaware - a land of farmers, chicken houses and some decent coastal beaches - our options for local healthcare are more limited, but fortunately we are within a couple hours of some of the country's finest medical centers.

Alfred I. duPont Hospital for Children and Hospital of the University of Pennsylvania are two such facilities where we are privileged to receive medical care. During one visit in July, we spent the morning with Adria at the children's hospital, then dropped her off with Ade's cousin and his kind family, while we went up to Philadelphia for an MRI.

It was a long day of appointments, especially when we ended up having to wait three hours for Adrian to get his MRI. In case you are not familiar with this procedure, MRI stands for magnetic resonance imaging. According to Penn Medicine, it allows imaging of the interior of the body without using x-rays or other types of ionizing radiation.

In Ade's case, it shows fine detail of every part of the brain in an attempt to locate tissue damage and a source for the seizures. He had an MRI done in early 2010 after his seizures first began. No tissue damage or abnormality was apparent at that time. The MRI machines are huge and loud, but you have to lie in a confined space for quite a while as the testing is done.

The tests are expensive, but we agreed that it was a good time to have it done again, since it's been over three years and the seizures have worsened. Plus, we just started going to the Penn Epilepsy Center this summer, and they needed to establish a baseline for treatment. After three years of seeing four different neurologists, who all did their own different tests and med changes, the last one we had in Virginia finally said that he was limited in the help he could provide and he would refer Ade to a specialized epilepsy center at a major hospital.

That's basically how we came to see Dr. Brian Litt with Penn Medicine, who ordered the study. He's a great doctor, who genuinely desires to help improve our situation.

One of the reasons it took so long for the MRI in July was because when Ade was prepping for his MRI, the nurses and techs became so nervous when he described what happens when he has a seizure that they were calling security trying to be prepared just in case one happened during the study. In the end, they figured the best solution would be to have me stay in with him during the MRI, so I could tell them what to expect. I guess it just shows, that even with highly trained medical professionals all around, we are responsible to be somewhat of "experts" regarding our own health.

We went back up to Penn Epilepsy Center in Philadelphia on Tuesday to talk with Dr. Litt more about the results of the MRI and the EEG that had been done earlier.  We were thankful to be there just days after passing the six month mark since the last seizure, it's encouraging that we've made this far without another episode.

Still, we were anxious to hear his feedback in hopes of learning something new, yet hoping that nothing major had shown up.

Nothing had. His brain looks healthy on the MRI, no obvious abnormalities or damage. Ok great, I guess...

The EEG study, officially called electroencephalogram, measures and maps brain activity. Ade has had this done several times before, and even had a 24 hour study where he had to sleep with these wire feeds glued to his head. Litt said the EEG study he had in June showed increased activity in the right temporal lobe and slight focal displation. This indicates that a minor brain malformation is possible, but it's likely microscopic.

Litt went on to say that the erratic behavior Ade displays during a seizure event would indicate that source of the seizure activity could be coming from the right frontal lobe of his brain. We have heard this before, as this area of the brain largely controls our behavior.

Just because tissue damage is not evident in the MRI, does not mean there was never an injury. It could have happened when he landed wrong jumping in the pool as a boy or any similar incident that resulted in a headache.

The image below is from the Brian Injury Association of America website, showing the areas of the brain.

I found an interesting article about frontal lobe injuries from the Brian Injury Institute.  It says, "Because your emotions are affected, the symptoms you experience from frontal lobe damage may manifest causing you to become impulsive or assume risky behaviors...The right frontal lobe is more involved with negative emotions, while the left frontal lobe is more involved in positive emotions....Because frontal lobe damage affects most aspects of behavior, mood, and personality, you will have to adapt what was previously basic human behavior, such as the relationship with oneself and others."

Well, at least that gives my husband an excuse for being a hot-head :) In all seriousness, it is helpful for me to read and learn more about it, so that I can be more understanding when things get crazy.

There have been many times when I have reassured myself with the belief that what he was saying or doing was not a true reflection of my husband's thoughts and feelings. It was altered by how the seizures impacted him. Often in the days and weeks before and/or after a seizure, this apparent difficulty in controlling impulses was heightened.

There is more that I have found and will elaborate on at another time, but suffice it to say that while we did not learn anything majorly new at this appointment, we are starting to piece some things together based on the studies and feedback that are leading toward a greater understanding of what it happening.

For now, he just had some blood work done following the appointment to make sure that his medicine levels were good, as there might be some slight adjustments in the amounts.

We finished up our time at Penn Medicine around 1:00 p.m. and decided that we should make the most of our trip to Philadelphia without children. Just a few miles away we parked near 17th and South Streets and happened upon an elegant restaurant called Davio's Northern Italian Steakhouse.

Since it was later in the lunch hour, the restaurant was nearly empty but we felt slightly underdressed for the formal atmosphere. Not a problem though. We thoroughly enjoyed this fine dining experience, and though it was pricy, we could splurge on the lunch menu.

The waiter greeted us by our last name and when he said the day's special, I only understood the part about scallops. I had no idea what that other stuff was, but why not try it? It was a delicious three-course meal with a veal and mushroom appetizer, seared scallops with pureed sweet potatoes for the main course, and a vanilla custard-like dessert... All amazing! Ade savored his salmon dish and cheesecake too.

Sure, this Sussex County girl was a bit out of her element, but I could adapt. If you're facing tough things and more doctor's visits than you care to count, ease the load and take time to celebrate life and enjoy lunch with someone you love. It helps!

The Purple Princess Party

Watching our baby girl turn 5 is a big deal. It's an even bigger deal when it's her first birthday, since she turned one, where we live close to many family and friends again.

Naturally, we had to celebrate in style. The Purple Princess Party was a grand event that featured eight adorable little princesses! The celebration was held on Sunday, Adria's actual birthday of September 8.

Eight adorable princesses attended the Purple Princess Party - Birthday Girl Adria is second from left. 

Aunt Leona graciously watched our two princesses in the early afternoon, while Mommy, Daddy, Uncles Cam and Aaron, and Grandma and Grandpa worked hard to decorate the back yard. I was really appreciating the fact that the home we now rent sits on a 3/4 acre wooded lot, giving us plenty of space for the festivities.

Due to the excessively girly theme, the only little boy invited was a princess' younger brother who actually turned one that day! Sorry, my dear friends with little boys, maybe next time we can do something for them too, I just know that my nephews don't appreciate the "prince" role that much :)

Adria and the token little man at the party, who was celebrating his own first birthday on Sunday! 

We kept the girls busy with a princess glasses craft, Crown the Princess game, swingset and sandbox, dinner and cake, and a castle piñata that an older princess had to help break. The princesses got along well and seemed to enjoy the "castle" we built with a canopy tent, streamers and wrapped diaper boxes for the entrance.

They eagerly joined in crowning the princess and hitting the piñata, all except for the birthday girl that is. Adria said she was afraid to play and wouldn't even try without the blindfold. I wondered later if she may have been unsure with her footing and afraid to fall in front of her friends? That's not usually a concern, but who knows. She did love the glasses, cake, loads of presents, and most of all, playing with a bunch of princesses!

And of course, no party is complete without a little drama. Just as we were getting ready to pray and bless the food, my little Johanna starting gagging on some watermelon and then spewed all over us both. Yeah, it was disgusting. But, we just stepped inside and changed while the guests got their food...I hope no one lost their appetite! Fortunately, Jo-Jo was only temporarily slowed down and soon was back to running around everywhere, like she does.

After that episode, I found a few minutes to sit down and grab a bite to eat before cake and presents.

My mom really gets into her grandkid's parties. She made the party invitations, the Princess for the game, and this great castle cake.

The weather was perfect and all the little princesses seemed to have a good time. Even though Adria didn't want to participate in the games and Johanna barfed on me, I would say it was a great party and well worth the effort. 

Finally, as the sun was setting at the close of the party, I was able to steal away my little 5 year old for a moment together. How I love this amazing princess!

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!

Crib Drama Tonight

We had just put the girls to bed when the drama happened. Daddy had to help me out more than usual tonight because Adria was being especially fussy and disobedient. I think it's due to her not feeling well with allergies or something, but she kept crying.

Just as he was getting Adria calmed down, I heard another cry.

I was actually getting the laptop out to write about Adria's pre-school experience when I heard the cry from my baby girl. It was not an "I'm not happy to be in bed" cry, it was different. That was definitely a "Mommy, Help I'm hurting!" cry.

I ran over to Johanna's room and turned on the light to find her little chubby leg caught in the crib! Up to her thigh. She must have been kicking energetically trying to avoid sleep and somehow wedged it in there.

Ok, just ease it out. Hold still, Baby. (yeah right). Wow, this leg won't budge!

At 21 months, Johanna is super cute with a little extra cushioning around her knees and thighs, just like her mama had. Ok, fine...like her mama has.

As the screams increased with my lack of progress, Daddy came in to take charge. I tried to comfort Johanna as she began to shake and twist in pain. Oh, poor baby!

After a couple minutes of uselessly trying to free her leg, Daddy was threatening to break the crib to get it out. But, right then he realized a way to gradually squeeze the chubbies through as I held her in a semi-lifted position.

Freedom!

This is the crib that held my baby's leg captive for a few minutes. This photo was taken in our Virginia home. We haven't had the motivation to really decorate her new room since the move to Delaware in April. Sorry baby.

She shook and squirmed as I held her in my arms trying to comfort her after the ordeal. Even blankie and the rocker and lullabies playing didn't help.

We noticed a bruise on her inner knee, and she actually began to calm down when Daddy placed a cold pack on it. But she started up again when he left the room.

He came back in and spoke in his comforting Daddy voice, and again she settled more. Looks like this one's going to require some Daddy snuggles to feel better.

And so he did. Take her and rock her and she relaxed into sleep within minutes.

He's such a great Daddy to his little girls. Their care giver, protector and greatest advocate.

Being a stay-at-home Dad can be so hard at times, but in moments like these when he is needed and their special bond is obvious, I know he treasures his time with them.

Almost as much as he treasures the peace and quiet of them both being asleep right now :)

But, after the night's drama, I am wondering if it's time for her to be done with the crib? Adria was in the same crib until almost 2 1/2 years old. I really don't think I'm quite ready to give our Adventure Baby the freedom to get in and out of bed as she pleases, but I do hope this doesn't happen again!

I took this sweet photo of Johanna sleeping on the couch yesterday morning, after she had woken up early and needed some mommy snuggles to get back to sleep.

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.