Baby Kennedy

Baby Kennedy

Tuesday, December 13, 2011

Our hearts & prayers...

Our hearts and prayers go out to a very special family we've been in contact with. Their little guy had TCS surgery like Kennedy and the family just found out that he retethered. I have read there is a 40% chance this can occur and my heart hurts for this family as they have to go through this experience again. Good luck. We know how strong you are little man and we know you can do it! Kennedy sends hugs and kisses and please give your Mommy a big hug from me! Love, Martha

Saturday, October 1, 2011

6 month check-up? BEE-EEE-EEE-AUTIFUL

Way to go Baby K! High five TEAM COLLER! Dr. Fuchs reported that Kennedy looks better than expected following her TCS Release Surgery last April. He watched her walk and run and examined her incision site. We have worried about her turned-in foot when walking but he says it has improved and assures us there's no need to worry about that right now. Her recent potty interest and usage was a big surprise to him too.

He provided us with the signs to look for regarding re-tether but really felt it would not be an issue for Kennedy. The signs are: low back pain, urgency to urinate, constant leaking, and increased clumsiness. We go back in 6 months - March 28th. This is a great sign since we have previously been on a 3 month check up schedule.

We love you big girl! Thank you for making us proud and being so tough! "SHOW US YOUR MUSCLES! RRRRRR"

Hugs & Kisses (always),
Mommy & Daddy

Monday, July 4, 2011

Original Spinal Marker

Here is a picture of Kennedy's spinal marking when she was almost 2 months old. It was on her low spine. I'm trying to be somewhat discreet in the picture. She was born with this marking. This picture may serve as a good reference to other parents researching TCS.

Tuesday, June 21, 2011

Another MRI tomorrow

Feeling nervous about Kennedy's MRI which is scheduled for tomorrow. Hopefully, it'll be the only one she needs. Dr. Fuchs wants to get a good look at how things look in there now after all the healing. It can also be used as a baseline if future symptoms ever present.

Yesterday, Kennedy found her scar and walked around pinching it and pulling at it. I can't help but hope that it's not hurting her. I imagine she just feels something new.

Thursday she goes for an ENT referral at Duke. Busy week!

Wednesday, June 15, 2011

Our Blog & Our Goal

We set up this blog to keep our family and close friends posted on Kennedy during her time from the day we suspected a problem to each and every follow-up appointment following surgery. They day I received the news that we need an MRI, I was alone at Kennedy's 9-month well-baby check-up. I had no plans to hear the news I was about to hear. I couldn't reach Nick on the phone and both of our parents encouraged us to be calm and wait to see what the test reports said. I knew they were right but in my heart of hearts, I knew what the diagnosis would be. All of our internet research appeared to confirm the outward markings on her body and then eventually matched the wording from the MRI report. But with that said, the internet proved to be very scary for us. I laid awake many, many nights wondering what TCS was, how it related to Spina Bifida, Spina Bifida? My child might have Spina Bifida? Will she be able to have a normal life? a boyfriend? play sports? etc. Seriously, the agony and worry went on and on. Being a mother is a blessing but for those short weeks from potential problem to surgery date, the burden of worry was strong.

The internet scared me in so many ways! I could not find one story where a child with my daughter's potential diagnosis came out OK. I feel and hurt for those families whose child has suffered, and in turn, whose families have hurt. I thought there was no way Kennedy would have a normal life. How could Dr. Fuchs steer me wrong?

This blog is to show other families that hope is out there. Since the time I started it, I have been contacted by four families about to endure the same surgery and each one has thanked me for the relief my blog has shared. These contacts have been some of the most meaningful contacts I have ever made. I want to wish their babies/children a healthy and happy future.

Today, Kennedy is almost 13 months old. She is walking, saying several words and occasional phrases, imitating us regularly, dancing to every hip/hop or rap beat she can find, kissing her Elmo and babydoll, talking on Skype to her grandparents, and living a completely normal life. We are reminded of her events only by the scar on her back when exposed during diaper changes and bathtime.

We are aware that the 40% chance of re-tether could be in our future. But today, we live our life without fear and with a renewed sense of fulfillment. I challenge you to do the same thing. Be incredibly thankful for your loved ones and let them know it. Don't just say it, feel it. Everyday I look at Kennedy and get excited at how great life is. She brings me the joy I never knew I was lacking! I love my little family.

Wednesday, May 25, 2011

12 month check-up

Just a quick update to let everyone know (and to give hope to all of you other TCS parents who like I, had only read sad stories on the internet) - Kennedy had her 12 month check up this past Friday and our doctor said developmentally, it's as if nothing ever happened to Kennedy. She is right on track! AMAZING!!!

Kennedy's next appointment at Duke is June 22nd. She will have a follow-up MRI followed by an appointment with her neurosurgeon, Dr. Fuchs who will read the report that day. Nervous, but confident and wishing for the best!

Wednesday, April 27, 2011

No Place Like Home

We are so happy to have our precious little girl home. We got home late Sunday afternoon and are SO much more comfortable now. We were instructed to change her bandage after 2 days, which was yesterday. After that, we are to change it every 5 days and then leave it open to the air for good. Her scar seems HUGE - 4 inches approximately and UGLY but our dear nurse mothers say it looks good, properly healing.

It's truly amazing how quickly she is recovering and I want other TCS parents to be prepared how quickly it happens and how utterly amazing it is. She is not herself 100% yet. She is more shy around strangers than she used to be, cries out in pain when she moves in certain ways, and is no longer walking independently; however, we've only been home for 3 days! It's coming fast and she'll be just fine before we know it.

As for now, home directions include dressing changes, no soaking (bath or pool) for 2 weeks, no shower for first 2 days, no lifting more than 5 lbs (hahahaha) and no strenuous activity. She is loving her Nana & Papa (saying both now) and the ice cream and tickles that come with them.

Thank you for all of the well wishes and prayers. We have our first follow-up appt at Duke with Dr. Fuchs next Tues (May 3rd). We'll keep you updated! Sorry for the delay, I've been busy catching up on baby snuggles!

Sunday, April 24, 2011

Not for those with weak stomachs - Meningocele Manque

So in addition to the fatty filum terminale tether at the bottom of Kennedy's spinal cord, her other type of tether (originally thought to be a lipomyelomeningocele) was actually determined to be a meningocele manque. Below is a picture of what one may look like. Note: this is not a picture from Kennedy's surgery.

Meningocele manqué refers to an element of dorsal tethering bands composed of fibrotic or atretic neural tissue connecting the spinal cord to dura or surrounding structures. They are usually found incidentally during surgical exploration for other elements.  *from Medscape Article on TCS & OSD

It is a form of spinal dysraphism where nerve roots and fibrous bands tether normal neural structures. This is exactly what Kennedy had going on. She had nerves and fibrous bands attaching to her spinal cord which was stretching and pulling it.

Saturday, April 23, 2011

Up Day

We made it! (Kind of) Today is      UP   day!

Dr. Fuchs came in this morning and approved her bed to be elevated. Hurray! The nurse just received the order and raised it 30 degrees (9:15am). Kennedy clapped and smiled more than she ever has! It was so funny! If she's doing well, they'll raise it to 45 degrees at noon! It's a happy day! So far, so good. We'll be watching for drainage and signs of discomfort. But, we aren't going to have any of that!!!

Yesterday was an awesome day. Kennedy was happy, slept well, and enjoyed some awesome visits. Thank you to Eve & Nicole, Jason, Cassie & Ethan, and Anna & Drew.

This morning Kennedy had another sponge bath and we tried jammies too. Dr. Fuchs said if all goes well tomorrow when we get her all the way up, she can go home. So we are really hoping that happens!

Friday, April 22, 2011

No news is good news

Today is Day 5 of being flat.

Day 4 - I didn't feel like writing. We had a very good day! Kennedy started rolling and she pushed up on all 4's twice so we had to tell her to lay back down (and help her to do so). For the most part though, she's stayed put. It's amazing. The dr's tell you that your baby has to be flat for 2-3 days for some tethers and 5 days for other tethers (like Kennedy's) and you just think, they don't know my baby! How are they going to do that? But they just do! Kennedy has really not tried to move much. The 1st 48 hours she hurt too much to do anything and screamed at you when you touched her. The next 24 hours she was content and just layed around and got very mad at you when you moved her but tolerated touching okay. The last 24 hours we've been through, she has still layed around most of the time but alternates herself between her side, back, and belly without help. She still cries out when we change her diaper but other than that, she is pretty happy or sleeping most of the time. Angie came and brought us dinner! Yummmy!!!
Kennedy is eating a little more too, baby peaches, home fries, applesauce, yogurt, cheese, juice, and formula.Grandma gave her a sponge bath yesterday and the neurosurgery team came and changed her bandage. Nick & I had gone out to lunch and missed it but I understand it is about 4" in length. It is longer than originally planned because her tethers extended lower than the MRI suggested. Neurosurgery says we'll be able to get her up sometime tomorrow with possible discharge tomorrow but more likely scheduled for Sunday. Easter at home - won't that be nice? We are really hoping so because my parents, Nick's parents, and Nick's brother and our nephew can all be there. I don't think I'll be cooking but I don't care if we end up having pizza - we can put ham on it right? :)

Thursday, April 21, 2011

Tips for other TCS parents

1. If your child uses a pacifier, BRING IT! Bring several! Kennedy was in a lot of pain, especially the first 48 hours and the pacifier soothed her.

2. Bring your child things from home: toys they love to play with and cuddle with, blankets that smell like home, and any security item they may be attached to. For Kennedy, her softest blanket has been helpful. We forgot her glowing, musical seahorse which I KNOW would have helped but my parents went home and are bringing it back today.

3. Bring music and movies. Kennedy has fallen asleep so many times to our lullabye music on my Ipod and I found bringing the Ipod docking station was helpful.

4. Bring snacks and a cooler for drinks. The cafeteria is expensive. For example, a 16oz bottle of soda here is $1.69 a bottle! Here at Duke, our room has a mini fridge and the floor has ice and water (along with cups). Also, check and see if your hospital has a Ronald McDonald room on one of the pediatric floors. Ours does so we use the microwave to warm meals friends have brought. Additionally, they have drinks and snacks you can enjoy in their room. Ronald McDonald House Charities You can search for a place to stay as well as check to see if there are rooms in your hospital such as the room at Duke we use. One other note, ours has laundry facilities which is nice because most hospital rooms don't have a ton of room for lots of luggage.

5. If friends offer to help, ACCEPT. It's hard for me, but I realize we enjoy the break of worrying by spending time with our visitors and also, their generosity may help you with your checkbook and your belly. Our dear friends have brought gifts for Kennedy, snacks for us, and meals for us. It's really been so nice. On a side note, after going through this, I have decided that if I ever have a loved one going through a tough time, I will be specific in what I offer. I will not tell another family "Let me know if I can help" ever again. Even though the generosity behind that statement is wonderful, heartfelt, and so very meaningful, most families don't like to ask for help. Additionally, it's hard to know what help we might need. In the future, my goal will be to offer two choices such as: "Can I bring you a meal or would picking up some of your laundry and returning it be more helpful?" for example. That way, the family can easily make a choice without having to ask or think too hard about how I can help. I now have lots of ideas how to help others and I intend to reach out further in the future as others have recently done for us. I definitely do not post this comment to sound ugly to anyone who has reached out to me. Everyone has meant well, more than well. They've extended their love to us. And you do want families to know you are there for them for anything but personally, I've found specifics to be more helpful. Perhaps it's just because I'm the type of person who hates to ask for help.  
But, I bet I'm not alone...

6. Bring things to make YOU comfortable - sleeping bags, pillows, blankets, camping chairs, slippers, laptops, games, books, movies, music, snacks, pajamas... the list can be whatever YOU want it to be. Trust me, the nurses have seen it all. This hospital room is your home for about a week so get rest so you can be your best for your child when they need you.

7. One thing I'm doing through this blog, taking pictures and videos, and journaling, is documenting this experience. Kennedy is 11 months old so she will not remember this - thank goodness! However, when she asks about the 4 inch scar on her spine one day or why she has to go to these appointments all the time, I can show her why. I want her to be proud of how strong she is before she ever knew what the word even meant. In my personal dictionary, Kennedy's picture and being are the definition of strong. I want to be just like her one day!

8. Don't forget chargers and batteries! Phones, laptops, Ipods, GPS', cameras, video cameras, toys, etc

9. Bring pictures from home. Tape them in places your child can see them. Kennedy has loved the pictures of her cousin and I wish I'd brought one of her cat because she asks for him every time she wakes up. "Buh?" (aka Buzzy)

Helpful Things People Have Done For Us Or Things That You Can Ask Friends & Family For:
1. snacks/drinks/meals while you are in the hospital if they are close by - healthy things are not abundant so families may really appreciate a fruit salad or another healthy snack
2. frozen meals for when you return home - you will be tired, have lots of appts, etc
3. singles for vending machines
4. VISA gift cards that can be used anywhere for anything (delivery, gift shop, cafeteria, drug store, etc)
5. time visiting, phone calls, emails, Skype chat sessions
6. Mylar balloons - Kennedy loves the ribbon and the balloon itself - has probably been her favorite gift
7. A Netflix movie from your account is easy to drop off and easy for the family to return because you just drop it in the mailbox when you are done with it!

*To MY family and friends, please understand this specific post is for OTHER TCS FAMILIES or OTHER FAMILIES WHO WILL HAVE A CHILD IN THE HOSPITAL FOR AN EXTENDED TIME. These are ideas I have come up with which may help them as they face what we have already been through. Advice from other families in the same situation, is not something I had a lot of so I'm simply trying to provide that to them. Please do not think I have not appreciated every facebook comment, blog comment, email, phone call, text message, etc because I HAVE... WE HAVE! The outpouring of love and support is in fact, overwhelming. I had no idea how many people loved my daughter. So thank you, from the bottom of our hearts for every single gesture.

Wednesday, April 20, 2011

Day 3 Update

Day 3 was a good day! Personality was abundant at times and that made us more and more excited that surgery was a success! Her nurse removed her IV this morning because Kennedy is doing so well drinking juice, formula, and now even taking some applesauce and yogurt!

More visitors today - Angie and later Adam! Thanks friends!

Unique note from today, our day nurse Susan has a daughter who was born with a tethered spinal cord. Her daughter is now 13 and doing very well. It was great to be able to ask her questions and converse candidly with her about the experiences we've both had.

Dr. Fuchs visited our room after 9pm after a long day in surgery and said she looks great. We will see him again tomorrow for another check up but at this point, we see great improvement in Kennedy's temperament, movement, and sleep so we go to bed this evening - very happy parents.

Tuesday, April 19, 2011

Video Goodnight

Can I make you yawn? Goodnight Day 2. Sweet dreams.

By the way, "bu" is short for "buzzy" - our cat.

Day 2 - Visitors & Improvement

Today we are making improvement, although slow. Everything still hurts which is expected. Every time we move her to rotate her from back to side to belly, she screams at us but seems to get comfortable once rotated. Her temp is a little lower but we've also started Tylenol. She is receiving Oxycodone and Tylenol (same as Percocet) every 4 hours and occasionally a little sooner if needed. We have tried Valium too to help with the spasms but when Dr. Fuchs stopped by this afternoon, he believes it is simply twinges of pain and will decrease as her pain decreases. As a mom, it's hard to watch her sleep for only a few seconds at a time due to constantly waking up.

Today, personality came out and so did the tears (for Mommy). She called for "bu" (her cat Buzzy) many times and even smiled twice. I teared up because the stress started to leave my body. Her smile makes all of us feel so much better! She babbled and shook her rattle and was very interested in her company. Valerie and Cheyenne stopped by with toys galore and shortly after, Jillian dropped off a wealth of delightful food! Thank you so much!!!

We are waiting for the pain to subside but she is enjoying her grandparents as well as Mommy & Daddy. ENT stopped by earlier today and felt she needs an outpatient appointment after discharge as she may likely need tubes (still has fluid and a possible infection again).

How's She Doing? 16 hrs post-op

We are so happy to have Kennedy back in our line of vision. Notice I didn't say back in our arms? That's because we can't hold her for the 5 days she is ordered to stay flat. So imagine your sweet little baby going in for surgery, hurting and fighting the anasthesia after, and then, not being able to hold her... That's what we have to do and what all TCS parents will have to go through after their loved one goes through this surgery. I believe a majority of the time, many TCS patients are only ordered flat for 2-3 days but it all depends on the type of tether and how much work had to be done while in surgery.

When we got close to the recovery room doors, we could hear growling/screaming before they even opened the doors. I felt so bad for that baby. As we entered into the recovery area, it grew louder and sounded like that baby was putting up a tough fight. Poor baby, is all I thought.

Guess who that baby was... Kennedy! She HATED coming off the anasthesia. She was up on all fours (which is a no-no) screaming, rolling, fighting. The nurse said in the 3 years she'd worked in that area, she had not seen a baby fight that hard and that long. Hmph! I didn't really want to hear that.

My advice for other TCS parents: DO NOT PICK UP YOUR CHILD. We were prepared ahead of time that it was not allowed until the orders for her to be flat were discharged. Imagine our surprise when the recovery nurse asked if we wanted to hold her! Sheer shock and excitement! However, we later found out that doing that was a big mistake on her part and that she never should have allowed us. Just don't take the risk. If someone tells you that you can hold your child, especially right after the surgery, offer to comfort them at bedside instead. Just don't put your child at that risk.

We are now in a regular floor room at Duke and have had wonderful nurses and NA's since her arrival to the floor. Kennedy continues to fight the effects of the anasthesia and is having a hard time sleeping because as soon as she falls asleep, she twitches - which hurts and then she cries and is awake again. Since 12:15am, she's gotten more sleep and seems to be doing a little better; however, now her temp is rising. It was over 100 F at the last check. The major risk with fever is meningitis since that cord and fluid were exposed. However, Kennedy is also pulling on her right ear like crazy. Since we've had 6 ear infections in the past 10-12 weeks, I would not be surprised if we have another. An order was put in at 4am by Dr. Fuchs resident to do an ENT referral while we are here and flat for 5 days. Poor baby girl...

I look all around me at this place and I see beautiful children. So many of these children have more difficult, longer battles to face than we do at this time. All around us, we see beautiful paintings and wall quilts marked with the words "In Memory of..." This place is humbling and I am so very lucky to be blessed with such a healthy, loving little girl. We will get through this and one day, I hope to tell Kennedy all about our experiences here in hopes that she will give back to her community that once gave her so much.

Surgery Updates

We were originally told that Kennedy's surgery would be 3 hours; however, I did not realize that estimate was actually the estimated time she would be in the operating room. Surgery itself, was almost exactly an hour so the stress itself was decreased tremendously because we had less time to stress! So TCS parents, it's not so bad!

After her evaluations with the doctors, they allowed me to go back to the OR all gowned up as we had practiced. I highly recommend this to ALL other parents if your young child is going in for surgery. Practice so they are more comfortable seeing you that way (and even if you can't go back, at least the nurses and doctors won't look so strange). In the OR, they put on a movie to try to distract her. Kennedy didn't care because she's not really into TV but it was a nice gesture. She instead played with the face ring, any cords she could reach, and looked around at all the lights and nurses. They did not give her the relaxer Versid (again I can't spell the names of drugs) ahead of time like they did with the MRI but I don't think it was necessary because she didn't have anxiety going into the procedure.

When they gave her the gas, it was via an infant mask. They snuck up behind her so she couldn't anticipate it coming and held it tight to her face. I held her arms and legs down. Kennedy is a fighter so this process was not easy but I knew it was necessary and I definitely preferred to be the one holding her down over a stranger. She arched her back but we just stuck with her until she calmed. At that point, I was instructed to kiss her and leave and by leave, they mean it! The head nurse grabbed my shoulders and ushered me out of the doors FAST!

From the time they started cutting, it only lasted an hour. However, the prep time before consisted of placing her IV, giving her more sleepy medicine through that, intubating her, and placing her foley. About 40 minutes after I left the OR, they called the waiting room to inform us they had started the surgery. 50 minutes later, they called to tell us they were almost done and 15-20 minutes after that, they ushered Nick & I to a consultation room to meet with Dr. Fuchs. This is where it gets interesting.

He told us everything went well. From there, he went on to explain that the fatty filum terminale cut was easy as anticipated but that the thought to be lipomyelomeningocele was not a lipomyelomeningocele. That is a fatty mass/tissue that attaches to the spinal cord abnormally and tethers it by pulling on it from that location. However, hers was not fat or tissue. As they were getting close to it, they found it was not looking normal and it turns out - it wasn't.

Instead of fat or tissue, Kennedy had a bundle of dead nerves and nerve fibers all balled up which tethered to the cord and were pulling on it. Additionally, from the MRI, it looked like her cord was tethered to the low spot of the L3, well it turns out it was actually tethered all the way down to the L5. So, surgery was more intensive on that end. Dr. Fuchs had hoped to only remove one bone from her back, open a ligament, go in there and be able to do everything from that spot; however, he had to remove more bones, which were all replaced. Also, they attempted to stimulate the mass of nerves that were tethering her cord; however, they would not respond meaning that they were dead so they removed those as well.

Now for the good news, prior to surgery, they tested her nerve function in the spinal cord. It took a level 9 (I do not know the measurement type at this time) to stimulate her cord. After surgery, it took a level 6 so essentially, her nerve function was improved by surgery as it now takes less stimulation for her spinal cord to respond. Also (and this one made Nick smile a big old Pepsodent smile), because of the way he was able to replace the bones, there will now only be a very small gap (very small) between her bones of the spine so she is now no longer at risk for most contact sports. In essence, she can play everything but ice hockey, boxing, tackle football, and 2 others I can't remember but have no interest in her playing anyway. So it looks like soccer and basketball may be viable options now - wow! We were not expecting that one.

Because her surgery was more involved, she will be kept flat for 5 days to reduce the risk of a spinal fluid leak. While in surgery, they had to actually open the covering of the spinal cord (the dura) and the cord and fluid were exposed so we need that incision to heal. Dr. Fuchs said Kennedy's back will hurt so bad the first 2-3 days, she will likely not move much simply because it hurts to much. Additionally, the pain meds will help keep her sleepy. After that, we just try to keep her in her bed and as flat as possible. Eventually, they'll raise the head of her bed to see how she tolerates it and later PT will get her up to evaluate and monitor her.

Monday, April 18, 2011

Made it through

Quick post to let everyone know we made it out of surgery and she's doing well. She is having a real hard time coming off of the anasthesia - has cried constant since 10:30 when she got out but she's ok and we are so thankful. Surgery was a little but more involved than originally anticipated but the outcome was good and we also received more good news. So, updates to come. Thanks for all the sweet posts, texts, calls, and emails!

Here We Are

(at Duke waiting for surgery)

It's official. She is in surgery. We arrived at Duke at 6am this morning and they took her back pretty quickly for the evaluations. She met with Dr. Fuchs and her two anasthesiologists. Her nurse's name was Jill and that was very special for us as Nick's sister Jill is also a nurse and is one of Kennedy's favorite aunts (they all jockey over that position though). The anasthesiology team let me go back with Kennedy until she fell asleep with the gas. She fought it hard, my little champ!

(in the evaluation room before operation)

They waited to start all IV's, catheter, intubation, etc until she was asleep. They said "OK Mom, give her a kiss" and I snuck three! The head nurse headed me outside and made sure I was okay before heading me out to the waiting room with my family. About 40 minutes later, they called the waiting room to tell us they had started surgery.

So we wait. Approximately 3 hours. Good news is that if everything goes well, we'll be in a regular floor room and may only be in 5 days now. FINGERS CROSSED!

Sunday, April 17, 2011

A bit of thanks

I just wanted to take a moment and thank all of you for all of the warmth being sent our way. It is overwhelming to hear your love in words. For all of the gifts, meals, prayers, and more... thank you, from the bottom of our hearts.

Practicing for Tomorrow

Tomorrow is the big day. Duke gave me a practice suit so Kennedy could be more comfortable with seeing people dressed like this. Now just hoping we get one of the anasthesiologist teams who will allow me back with her until she falls asleep. Some do, some don't.

Saturday, April 16, 2011

The MRI - as I see it

I truly hope I've labeled this correctly but this is Kennedy's spine and spinal cord. The dark area is the spinal cord and where it looks like it splits is where her 1st tether is (the lipomyelomeningocele) and then down below the where her spinal cord ends (L3 level) you can see a light gray which is the other tether (fatty filum terminale). I hope I have this right but this is how it was explained to me. They are going to cut the 2 tethers away from the cord while monitoring all of her muscles to as not to aggravate any area. Sigh...

Thursday, April 14, 2011


At our MRI results appointment, we met with Dr. Fuchs Nurse Practitioner first. She looked at Kennedy's ears for us as we'd been battling ear infections, asked us a few questions, looked at her strawberry, and left the room to share her information with Dr. Fuchs before his arrival into the room.

Dr. Fuchs does NOT seem like the expected neurosurgeon type. He is SO friendly and honest and laid-back. He answered all of our questions and encouraged us to ask more. He told us to call or email any time if we thought of more questions (which we did).

Sooooo.... she has a tethered spinal cord and needs surgery to detether it. Basically, when her spinal cord was forming in utero (around the 18th-22nd day after conception, before I even knew I was preggers), it didn't form correctly. Instead of a free floating spinal cord, hers attached to a bunch of soft tissue on the side and at the bottom. The problem with this is, it is stretching her spinal cord. In a normal infant, the spinal cord is free floating for a while and as they grow, it eventually moves up into the spinal column where it is protected. As you bend and reach for things, it moves up and down in the spinal column.

With tethered spinal cord, it is a problem because the spinal cord never moves up into the spinal column because it can't because of the attachment. As she bends and reaches, it stretches even more. This can be painful and neurologically can cause many problems, primarily with control of bladder and bowel function as well as walking issues with things like turn out and strength as well as scoliosis and sensory problems. Along with pain, it can also cause numbness.

The way he put it is, if she starts to have symptoms like those mentioned above, they are not reversible so once she loses control of her bladder, she would likely never have control of it. A catheter is not cool. A diaper now is fine but not so cool in high school. Although this truly is not funny, he was trying to lighten the mood and it was appreciated at the time.

Hearing that she needs surgery and a major one at that, it felt like tunnel vision, but in my ears instead. My ears literally hurt, they echoed, they rang. I fought back tears and looked at Nick and could tell he was too. I feel so bad for her even though she really doesn't have a clue what's going on right now.

I think we are lucky that it's being done now because if things go perfectly well, she may never know this was even done. She may never have any lasting problems from it. But... she may. Also, there is a 40% chance it can retether - that's a HIGH PERCENTAGE! How would we know it was retethered? Symptoms. We are lucky this time because we have the physical markers but if it happens again, it'd be because of symptoms. Remember, symptoms are not reversible. Augh...

Also, and this may not seem like much to many but if you put yourself in my shoes, it might seem like more. I know we'll get over it and I know in the grand scheme of things, it's not the biggest worry BUT Kennedy is the daughter of a PE Teacher and former athlete in every sport and current coach in practically every sport and the daughter of a former college soccer player. Kennedy can never play contact sports. I don't care what anyone says to me but that STUNG!

Kennedy's tethers are called a fatty filum terminale and a lipomyelomeningocele. Her surgery is estimated to be approximately 3 hours and she will be at Duke 6-7 days post surgery.

Monday, April 11, 2011

MRI - March 17, 2011

Kennedy had her MRI March 17, 2011 at Duke Children's Hospital. One of my very best friends Angie Phillips took the day off work to join me since Nick was unable to get the day off. The nurses and doctors ran right on time! It was extremely impressive!

When we got back to her individual room, we undressed her top so monitors could be placed. The radiology doctor explained the procedure and answered all of my questions including my question about contrast. I had read that it is usually used in MRI's looking for tethered cord. She said yes, it would likely be used. She explained the IV medicine and it's effects and also offered us Versid (I do not know how to spell medicines!) which was an oral relaxation medicine. I was hesitant to give her extra medication but when I considered how active Kennedy is, I decided it might be best to give her the Versid to help her relax when the IV is placed. My decision was a good one and I do recommend that to other families considering this option. I understand it may also be an option before her surgery. She calmed to the point that she was just laying in my arms but awake and content. She did not fight the IV placement. She did however, fight the IV medication/sedation. She fought hard but Mommy was kind of proud inside that she was such a fighter! I had hoped I taught that to her but it was likely me just trying to calm myself in the moment. When she gave in, it was lights out!

My biggest fear with testing and surgery is the part where they wheel her away so when they began to do that for the MRI, I started to feel the anxiety warmth attack my body and the tears well up in my eyes but it only lasted a matter of seconds because they turned around and said "follow us." I was THRILLED and SHOCKED! I got to stand right beside her through the entire test! I was literally IN THE ROOM beside her and could have touched her if I needed to. I watched her chest rise and fall the entire time. The test took in total about 35 minutes. This included the time where the test was stopped to give Kennedy extra oxygen via a nasal canula. I was a little worried but not too concerned since I was seriously watching her chest rise and fall the entire time and I seriously thought she was fine. I honestly think it may have been an ornery O2 sensor. I was concerned that including that break the total time was 35 minutes because I was informed before the test began that it would be 45-50 minutes if they did contrast.

So, I asked questions which I encourage every parent to do. You find out so much more when you do! I asked her primary doctor "Did they use contrast?" and she said "No. They didn't need to." My heart dropped. I knew right then and there, they had found something and didn't need the contrast to confirm it or look for anything else. Right or wrong in my reasoning, I was right in my feeling. Call it Mom's instinct.

Referral Day - February 15, 2011

Kennedy was born 11 days early at Durham Regional Hospital in Durham, NC. Immediately after her birth, she was admitted to the special care unit because of a few concerns with her temperature and blood pressure. I could not be with her while she was admitted and an initial evaluation was done because my placenta had not delivered and had to be manually removed. It was a very happy yet sad time for my husband, Nick & I because we were elated at her arrival, yet depressed that she could not be with us. I was down... I didn't want to see friends, I only wanted my parents and husband, and to be with Kennedy every second I could.

I first noticed a strawberry on her spine the first evening in the special care nursery. I asked the nurses and doctors and everyone told me it was just a hemangioma and would go away over time. After our release from the hospital, I continued to ask regularly at our pediatrician appointments in Durham, NC. I was comfortable with the decision that it was just a birth mark basically and to not be worried.

Our family moved to Burlington, NC in November 2011 and at our first well-baby check up at 9 months old, our new pediatrician at Hillsborough Pediatrics, Dr. Clepper-Faith immediately noticed the strawberry and mentioned concern because it had a bit of a fatty pouch under it. She quickly looked for other signs and found two more in just seconds - a deviated buttcrack (for lack of better terms) and a sacchral dimple (or hole in her tush along the crack line near the top). I had noticed it for a long time but just thought it was a cute little spot, kind of like the little hole in my nephew's ear. I would have no idea that was a concern UNTIL my new doctor looked for it and did a referral for an MRI at Duke Children's Hospital. I am FRUSTRATED that the special care nursery and the first pediatrician did not look for these signs that were there from birth. I am RELIEVED that our new pediatrician was so thorough and so educated.

Dr. Clepper-Faith told us her reason for MRI was concern regarding a possible tethered spinal cord. My brain went into instant panic because although I didn't know anything about it, to hear a concern with her SPINAL CORD was deafening!

Sunday, April 10, 2011

Diagnosis - Tethered Spinal Cord

MRI was 3/17/11. Monday, 4/18/11, we go in for surgery.

Kennedy was diagnosed with a Tethered Spinal Cord. She will be undergoing surgery at Duke Childrens Hospital in one week. Her pediatric neurosurgeon is Dr. Herbert Fuchs. We are expecting a 3 hour surgery and a 6-7 day stay in the hospital following surgery during which most of the time, she will be laying flat.

Today, I am trying to learn how to blog. I will update on the diagnosis, what led us to it, and what Kennedy's future holds in our eyes as I learn how this works.

In the meantime, thank you for the prayers and well wishes. Although they may seem small and insignificant to you, they lift us up in ways that words cannot describe. So, thank you.

Much love,
Nick, Martha & Kennedy

P.S. The MRI image in the background of this site, is actually Kennedy's MRI. It's a great image showing exactly what is going on. I'll post a detailed MRI later where I labeled everything which may help you to understand what I've described to you. It definitely helped me to understand the situation better.