Stem Cells Round 2

 Meagan's second stem cell infusion at Duke University took place last week.  Luckily for us, we have great parents and inlaws ... my mom and dad came down to keep the older kids in school and their routines....and Brian's mom flew in to take over the second half of the week.  We left the Sunday before her infusion and got to Duke Sunday evening. 

We had the pleasure of meeting up with Brian's sister, her husband, and their 2 daughters before we went to our hotel. They live relatively close to Duke, and Katie (Brian's sister) and I are very close so I was really looking forward to the visit.  Mike (her husband) is leaving soon for Afghanistan, so there was the added bonus of seeing him and wishing him luck/spending time with him before the deployment.  We had dinner together and I also got to meet their second daughter (2 months old) for the first time.  She was such a cutie.  I had to laugh at myself because I automatically reached for her with the "Hydro hold" but of course I soon realized Claire was much stronger than I thought.  Although I've had my 4 older girls, I'm so used to Meagan now, I "forgot" how strong a typical 2 month old is. Claire was such a sweetheart.. I was so glad I got to meet my newest neice!

Meagan (5 1/2 mos)  meets her newest cousin, Claire (2 mos) 

Meagan getting a snuggle from her Godfather, Uncle Mike, before he deploys.

After lots of laughs and a great time together,  we said goodbye to Katie and Mike and the girls and headed for our hotel.  We were excited for the next day - Katie and Mike surprised us by having an old friend of mine, who is a photographer, plan to come the next day to take Meagan's first professional pictures! We couldn't wait!

Monday morning came - we were excited for Meagan's pictures and spending a few more hours with Mike, Katie and the girls....but I got a phone call that morning... Katie was sick and had been all morning :(  I felt awful she was so sick!! The photographer was still coming, but, we were not going to hang out that day with Brian's sister and family because of them being ill.  It was disappointing but I was really hoping they felt better soon.  Being sick is NO fun at all!!  We said our goodbyes and waited for the photographer.

Now the story behind the photographer's connection with me is pretty neat.  I grew up with a military dad - we lived all over the place... all over the world.  On one of our tours in Germany, I met a girl named Tiffany Kay.  She lived on the other side of the base from me, so we'd often trade bike rides going across to each other's apartments, meeting at the playground, or we would see each other at school.  Time came to move again and we moved back to the States, as did she.  For the most part, we lost touch. 

Fast forward 22 years.... there is an amazing thing called Facebook.  We randomly reconnected through Facebook and began to keep in touch again.  This is when I found out she did photography, and in the past, since she lives near Brian's sister and her family, Tiffany had traveled to their place a few times to do photos.  So now she was coming up to Durham to do photos for us.  Such a strange feeling seeing an old childhood friend after 22 years... and then watch her photograph your child!! It was such a neat turn of events.

We took a few photos in the hotel room on a blanket because although it was a beautiful day, it was a bit cool and the breeze was definitely cool as well.  We did want a few outside shots, though, so we went up to the Duke Gardens on the campus.  We walked around a little bit and took photos.  The pictures Tiffany got were amazing. 

Meagan had been "off" that whole day.  The previous day, she had been smiley and very happy.  This particular day, she was just "gloomy."  Any Hydro mom knows "those days"... when your child is just not themselves and is almost not "with it"....  so the fact that Tiffany was till able to pull out amazing photos of Meagan is proof of her talents.  She was able to get so many great pictures - and really capture "Meagan" through Meagan's eyes and expressions.  Even on an "off" day, Tiffany was able to really tell Meagan's story.  I have posted a few of Meagan's pictures below - if you live in the Southeast (NC, SC, FL, GA, etc.) please contact Tiffany Kay Photography (https://www.facebook.com/messages/1601700739#!/tkayphoto ) and give her some love! She did an amazing job and will for you too.

After Meagan's photo shoot, Brian and I got some dinner and then went back to the hotel to get some rest.  It was going to be an early morning getting ready to go to Duke Children's for the day.

The next morning we got up pretty early.  Meagan had of course fussed all night.  I fed her, bathed her, and dressed her.  I put her in her cute red Minnie Mouse pjs... I thought it would be good luck.  We got our stuff together for the day (phones, computers, etc.... ) and left.  (Yes, it is a long day with a lot of waiting so we needed some mommy and daddy entertainment!)

We arrived at Duke Children's... we went up to the 4th floor and checked in.  We were taken back very quickly and Meagan got all her stats done.  Then we went into her room in the day hospital and waited for the nurses to come and start her IV.  The nurses came -- Meagan was in a SUPER good mood that day.  She was smiling and cooing like crazy! Matter of fact, several nurses came from down the hall just to see that baby who was making "all that noise." 

Meagan cooing and having a grand old time



Meagan didn't stay happy for long -- after 4 failed attempts at an IV, she was very upset!! I would be too! Meagan is just a really hard stick. she has teeny tiny squiggly veins.. ones that look good blow too easily. and ones that look bad are hard to get. The nurses finally said they were going to call in the PICU team to get Meagan's IV in so she wasn't more traumatized than she had to be.  The PICU nurse came in and got it on the first try! Yippee.  So then we waited for the doctor.

Meagan fell asleep after 4 IV attempts....Trey (music therapist) soothed her to sleep with some great guitar music.





Dr. Sun came in - she works with Dr. K on the cord blood infusions and so she handled Meagan's that day.  Trey the music therapist came in and all the nurses.  Dr. Sun got the infusion going.  It's amazing watching the blood travel from the bag...through the catheter and into Meagan's body.  Normally such a thing wouldn't even phase me, but knowing those stem cells were in there was just such a cool thing.  I wondered where they would go once in her body - how they would help her...if they would help her....what kind of miracles were possible with these undamaged cells...  It is just such an awe inspiring experience.



After about 10 minutes, the infusion was finished.  Meagan then got hooked up to IV fluids for a few hours to make sure she was well hydrated before she was discharged from the hospital.  Once she was finished with the fluids, we got the "ok" to leave.  We got our things and headed out.  We got some dinner and headed back to the hotel to get some rest before our long drive home.

All tuckered out from her big day



The infusion was a great experience, yet again.   Trey singing gently to Meagan..... the nurses talking softly... Meagan staring intently at every step in the process as if she was taking it all in... and Dr. Sun explaining step by step as the infusion happened... the whole environment is like something I've never been in before at a hospital.  It is a strange sense of being when the infusion is happening - it's like feeling love, hope, worry and comfort all at the same time.  I think it's because after going through so much negativity with specialists before Meagan was born, we were finally standing at a place where the doctors' sole purpose was to help babies like Meagan - to offer parents hope and view Meagan's potential as something important.

We report back in 2 months to let Dr. K and Dr. Sun know how Meagan is doing and if she is doing anything new.  If she is doing really well or we notice Meagan doing a bunch of new things, they said they may have us come back earlier than her 1st birthday for her 3rd infusion.  If things stay stable we will probably make plans to go back around Meagan's 1st birthday instead. 

So far, Meagan is still doing well.  We haven't noticed anything 'new' yet, or any changes from what she was previously doing.... but we know those cells are working wonders - even if it's in ways we cannot see outwardly. There may be miracles happening in Meagan that are not made obvious to us....but that's what hope is all about. And even if I can't see it, I"ll err on the side of hope every time.

Face of hope

Eye Follow Up

Meagan had her follow up eye appointment today.  She did very well! They dilated her eyes to check structure.  The doctor said the structure of her eyes looks pretty good.  He also said she is tracking with both eyes and seems to focus with both as well.  She can't focus for long.. she will stare at "larger" things, like streams of light coming from rooms..etc. but as far as toys, once she 'locks on' and tracks it for a second or so, she will shift her eyes, or her head will turn and she will be looking "through" it once again.  The doctor said we'll watch this tendency and hopefully all she needs is time to continue to focus more than a few seconds on smaller items.

The doctor did say that she has severe farsightedness so next month when he sees her, he wants to look at her eyes again and probably put her in GLASSES!  A 6 month old in glasses?!?! How CUTE is that! haha.. I figure ... if she needs them, we'll roll with it and pick out some cute ones!

Outside structure is uneven - which is no surprise... her sutures are uneven too, so of course her facial features will be misaligned.  He said she does have quite a bit of turn in especially in her left eye - it seems to "float" more than the right.  So we're going to watch it and see if it needs any additional help down the road.

So for now we wait until she's officially 6 months old so we can put her in glasses.. and hopefully they "beef up" her vision to make those eye muscles stronger and her vision better.

Also, today for the first time in 3-4 days, she was actually ALERT and awake.  She's been kind of "eh" lately... but today she woke up with a big ol' grin and continued to smile at me as we were waiting to go back for her appointment.

In the waiting room, there was another mom waiting with her 4th grader.  She began to compliment me on Meagan and we started talking.  Meagn became fussy and she asked nicely if she could snuggle Meagan for a few seconds... her "baby" was next to her and in 4th grade and she missed that baby stage!  I of course said, sure! As she came over towards me, the woman asked how old Meagan was... I told her "5 months" ...  But.. without thinking, I forgot to tell her Meagan couldn't hold up her head.  The woman reached down and lifted Meagan up, as you would any baby, and Meagan's head went... FLOP! Straight back.  The woman's eyes said it all - OOPS!  But it wasn't her fault.. it was mine for not telling her to support Meagan's head.  Meagan didn't seem to care one way or the other.. she didn't get upset at all.  So I showed the "Hydro hold," so I call it... (one hand under the butt, and one hand under the base of the head) and snuggled Meagan for a few minutes.

Meagan did calm down... as I listened, I could hear the lady was whispering in her ear "Jesus loves you.. you are a gift".... I just thought that was so sweet.  We talked a bit more about what Hydro is, what Meagan had been through so far, and what some other families go through with Hydrocephalus.  Before we got called back, she thanked me for chatting with her...and then thanked me for choosing life for Meagan.  Not that it was ever a "choice" for me... but I really appreciated her recognition of the hardships moms with special kids go through.  And it was nice to run into a stranger who understood what a miracle any baby is.

So all in all... a great day at the Eye doctor for Meagan!  Now we go onto the Pediatrician tomorrow for another weight check.  Anxious to see if she's chunked out at all!

All smiles today!!!

Biggest one yet!

All tuckered out from a mere eye appointment! haha

Meagan's voice

Hydro has its ups and downs as we know... so I thought I'd post one of her great "ups"

Meagan was talking to me a lot yesterday! She has a lot to say.

Neurosurgery Visit #561,784

Ok so I'm exaggerating a little on the number.  But it sure does feel like we've had that many visits!  Meagan's shunt catheter, as you know from prior posts, was puckering outward.  Her skull sutures (bone plates) were also starting to severely override and she was having more periods of irritability.  So we had a CT scan this morning along with an appointment with Dr. R.

Radiology was moving pretty fast this morning.. they had Meagan in and out in about 20 minutes.  Then we had to wait for results.  Wednesday is the absolute busiest day for Dr. R... they told us on the phone to be prepared to wait a long time.  That was fine with me.. I just wanted answers.  I went ahead and arranged pick up for my kids from school, and rescheduled my music lessons and was ready for a long day. To my surprise, I was on the way home just after lunchtime.. but it didn't make the day any shorter.

Dr. R called us back and we started to go over Meagan's scan.  I will simply list results below so it is clear and concise.

Good things:

1. Her shunt is still working fine.  The catheter is still long enough into her ventricles, and all parts seem to be in tact.  It is also still anchored where it is supposed to be and the tubing doesn't look kinked on the inside.

2. There is still brain tissue visible.  It isn't much different from last Fall, but, still moving in a positive direction.

Now for the "other" things.  I won't call them "bad" but they certainly aren't things we "want" to deal with.

1. Chiari malformation. Written in plain language.  On her report. (http://www.mayoclinic.org/chiari-malformation/) Honestly, if you will remember a few scans ago, there were "hints" of this.... the cyst in the back of the brain, the crowding in the posterior fossa region, and the cerebral tonsils extending into her spinal canal.  Today the scan showed clearly it is Chiari malformation.  This was almost a "relief"... only because I KNEW it was being "hinted" at for the last few months, so it felt better to have a definitive confirmation of my gut feeling. 

Knowing this is important because outward symptoms of Chiari can include things Meagan has been doing lately....namely, her feeding difficulties.  Meagan stopped taking bottles slowly but surely - even on the slowest flow, she would gag on the milk.  She did not do well with trying a solid as she also gagged.  And now, even when she nurses, she stops several times during a feeding to take a break, gag, or swallow.  She is also spitting out a lot more milk.  Dr. R talked to us about this and he would like us to go back to her GI doctor.  Considering she's having these symptoms, has a definitive scan, and is losing or having trouble maintaining her weight, he thinks it is a good idea to make a plan with the GI doctor to hopefully get Meagan on a better path.  If she nurses for a few more years, that is fine with me, and with her doctors.  But the fact is that she needs some other calories now...whether it's solids, or other things, we need to start building her up.  Especially because she has to work even harder at her motor skills than typical babies. Also, a stronger, bigger baby means a much "better" candidate for surgery (which I will explain later).

2. Overriding Sutures:  Certainly not a "new" problem for Meagan...but they have never been this bad.  Not only are her top sutures overriding, they are REALLY overriding... her side sutures stick out, and her back sutures are sinking under each other.  This would be a sign of overdrainage (shunt working too fast)... but Meagan cannot function at any of the higher settings.  She starts to become fussy, not eat (which we do not need), and her sutures even get fluid pressure in between them to the point where you can certainly see them bulging.  So the bottom line is: we are between a rock and a hard place.  She can't tolerate the higher setting....but this one is obviously too fast for her. Dr. R did not want to turn her up again because we'd be back to the same place we were before - a very unhappy, uncomfortable, un-functionable baby due to pressure.  So, we are staying at this level for now.  The risk? As she gets older...and those bones keep overlapping so badly, there is a high risk for craniosynostosis.  (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002557/) The bad thing about this for a kid like Meagan? Her brain is still growing out.  Will it ever be "normal" or "full"? No... but we need to allow it the BEST chance to fluff out as MUCH as it possibly can.  If her bones fuse early, it can constrict brain growth.  So, if she keeps down this path, and her bones continue to fuse together, Meagan will end up with craniosynostosis surgery this Summer. 
Dr. R has scheduled Megs for a repeat CT scan in late summer with 3D reconstruction imaging so he can see how her sutures look and if any fusion has taken place.  He seems to be thinking that is where we are headed....he told me bluntly today we are headed for another surgery.  But, he is hoping that we get a miracle and Meagan's brain fluffs out and her head naturally grows out enough to pull the sutures apart before fusion.


The thought going back and forth in my mind was "Is there another shunt we could try to find her "perfect" setting....and at the same time, seperate those sutures to avoid the cranio surgery?"... There are options out there.  I have learned a lot about them and did consult a second opinion.  However, I'm having a very tough time with it because I really do trust Dr. R and how he has dealt with Meagan so far.  There is no guarantee a new shunt would work perfectly...and if she still fuses, it would be a third surgery instead of a second.  So it's a very tough decision whether to sit on what Dr. R said today and wait it out until summer....or actively pursue that second opinion even more and push for a new shunt. 

I was glad to see her shunt placement is still fine.. it was a relief. But of course other questions arose with the new findings in the scan.  The worry about the cranio surgery hangs over me as well.  I'm praying that her sutures seperate on their own and we can avoid the surgery all together. But in the meantime, we will go see the GI doctor and try to get a plan going for Megs about her eating.  Between the GI doctor and her new OT, hopefully she will have a lot less gagging instances and can start to gain more steady weight. 

As for the other stuff - it's Hydro.  That's all there really is to say about it. So I'll take the information and tuck it away and keep on keepin' on.

Catching a Break

Riding the wave was certainly a good description of the "wait and see" we are doing with Meagan's shunt and seizures... but catching that break to get on a good wave seems a little difficult at the moment.


As we know, Meagan couldn't tolerate the higher shunt setting, so they turned it down (faster flow) because she had puffed up so badly and been fussy.  She had also lessened her feedings..etc.But... at this lower setting, she is starting to severely overlap again. 

Sutures really overlapping

 

That alone wouldn't worry me ... but then I noticed later in the week her shunt catheter was loose.  It should be anchored to her skull...and her shunt and valve would move all over like a wet noodle.  It also kinks and buckles when she lays back, or moves her head backwards.  Sometimes, it even buckles when she is just lounging around doing nothing.  It is very odd.


 

Catheter puckering out from her skull

Then today she spit up twice - a LOT of milk.  It was like you had a pitcher and were just pouring milk out.  She did smile at me afterwards... so it's very hard to tell what is actually bothering her. But spitting up along with her other symptoms isn't always a great sign. Also tonight, her back sutures have started to now overlap..another sign of overdrainage.  It's not always a bad thing, as with any shunt symptom, but, together with everything else it is very worrisome.

Back sutures starting to overlap

I sent pictures to her NSG and he said he wants to see her in on Wednesday for a CT scan and go from there.


I'm not really sure what the plan will be.  We can't leave her as she is because she is showing all signs of overdraining.  Unless her CT scan comes back surprisingly good, it will also show overdraining....and it is dangerous to leave her at such a flow because it can cause brain bleeds or a skull collapse from lack of brain holding up the over reaching sutures.
However, if they turn her back up to a slower flow, I know we'll be back to have it turned down again because she puffs up almost immediately, has bulging fontanels, and gets fussy and stops eating.

So I don't really know what we'll do.  I don't want her to have another surgery.. however I want her to be able to function and be happy at least physically as she continues to progress. 

She is one strong little girl.  She has smiled at me so much today.. but also had 2 and 3 hour crying spells.  She is so much stronger than I am.  If I were feeling half as bad as she is, I'd be miserable! Yet through it all, she is still showing me smiles when she can.  I don't mind riding the wave with her.....I just hope that soon, she can catch a break..and be on a good one for a long while.

I hope Wednesday brings us answers. 

What the little princess has been mostly doing today



I want my bright eyed girl to be comfortable again

Connections

Nothing about a Hydrocephalus diagnosis is "good"....or so I thought.  When you first get the news, it is such a shock.  And then you Google, and freak out.  And then you worry and fear for your child.  But then things settle down and you start to do your own research ....which ends up leading to people.  People who are in the same boat as you. Talking with these people leads to more accurate and full spectrum information....and that leads to hope.

 I had always been a woman of faith - especially when things were down.  If my kids were sick, I always felt they would recover ok.. and they did.  If we were about to overdraw our account and I was worried about bills, I would just have faith and somehow, a random check from some random music gig I'd done would "show up" in the mail to cover us until the next payday. After a few days of Meagan's diagnosis sinking in... I honestly had this strange "peace" that came about me and I just felt like everything was going to be ok. 

I will never forget after Googling "congenital hydrocephalus" the feeling I had in the pit of my stomach. I decided to do a little more ' in depth' research on the diagnosis. I found a website called www.fetalhydrocephalus.com written by another Hydro mom along with doctors.  For the first time on this journey, after reading through her site, I remember having peace of mind.  Michelle's son, Owen, also had congenital Hydrocephalus.  She, too, found the "Google" information scary and put her head together with several doctors to write this site for future Hydro parents, like myself.  Her website covered absolutely everything - from intitial diagnoses, to possible complications from the condition, to equipment or things we may need for Meagan down the road, to anything and everything a Hydro parent could possibly want to know. Among the most valuable pieces of information was the link about the stem cell infusions Duke University was doing for Hydro kids.  Michelle is the very reason Meagan ended up accepted into the Duke program and is able to receive these valuable cells.  Without Michelle's site, we may have never learned about this new hope for children with Hydrocephalus. 


 I decided to search among baby websites as well and see if there were any other personal stories out there.  My search brought me to a website where they had several message boards on a variety of topics.  I remember typing in "hydrocephalus" and holding my breath - praying a message board would come up with the subject I was looking for...and sure enough, one did.  I clicked on it, and brought up the page.  I decided to leave a message and see if anyone would answer.  In less than a day, a woman named Amy messaged me back.  She was the mom of Parker, a little girl also with Hydro.  She talked to me right off the bat as if I were family.  She told me of her story, guided me to her family blog, and gave me a lot of great information about Meagan's condition.  She also was one of the first people who gave me great hope as a mom.  She was one of the first people that made it personal.

Amy also sparked an idea in my head - she had a blog. I wondered how many other Hydro families also had a blog?  I started to google fervently and searched for hydrocephalus blogs, blogs with hydro, etc.. anything I could think of. I searched and searched and happened to come across a blog by a woman named Lisa.  She had a beautiful blog and I noticed she also had two older girls, besides her youngest, Elisabeth, who was her Hydro girl.  On her blog, there was a letter to all future Hydro parents, and an invitation to email her.  I took her up on it.  I emailed Lisa that day and detailed our story to her.  She wrote me back the next day and this is some of what she said:

 I was encouraged multiple times to terminate Elisabeth when they first discovered the hydro. They said, “most parents aren’t prepared to deal with a child like this” and “Do you really want her to live a life of handicaps and surgeries?” But I knew there was no way I would abort my sweet babe. On the contrary, I was going to love her and protect her with my life – she was my baby. And that decision, to keep her, has been the greatest blessing in my life. Elisabeth is an angel on earth.  She fills our home with a love that is indescribable. I feel like the luckiest mama in the world.
 So don’t spend too much time worrying over the details of the future. Just know that she will be yours and you will be hers and that’s all that really matters.The other things will work there way out. You’ll learn more about her abilities and disabilities and figure it out one step at a time. And if you ever need advice from someone who’s been there before, you can always ask me

Words to live by.

************

Lisa also mentioned to me that she knew another couple, Brad and Amy, who had a daughter, Claire, that lived in the Atlanta area.  She said there was a group online where Hydro families "met" and talked, asked questions, and supported each other and that she would add me to it. 

I was added into the online group, and soon connected with Brad and Amy.  It made sense not only because they had a baby girl with the same condition, but because they were also right here, in Atlanta.  I remember immediately finding their blog, scouring it for information, and reading all about little Claire's journey.  We chatted a few times over the Hydro online group, and soon became friends.  Through the rest of the summer, and through the early months of Meagan's life, my posting on the board has now led us to several other Hydro friends as well.  We have met up to 4 or 5 other families in the Atlanta area, several others from around the U.S., and even a few from the UK.  These families helped us with details we hadn't even thought about - for example, a hat for Meagan when she was born.  No 'regular' hats would fit her head.... so a fellow Hydro mom crocheted a beautiful hat and sent it to Meagan before she was born.  The fact that most of us have never met "in real life" shocks me sometimes because there is an incredible bond that exists among these families. 

This past weekend, Brian and I were leaving Brad and Amy's house.  We met up with them, had dinner, and just chatted.  It was honestly one of the best nights of my life.  It was nice to connect with another family who knew exactly what we were going through day to day in person.  We held each other's children... Meagan got to snuggle Brad and Amy.. and I got to hold Claire. We talked about Hydro, but, for the majority of the time, we didn't. The conversations flowed along many subject lines ...  It just felt comfortable to know that if Meagan had an off night, they would just "know"... there was no stress.  Meagan dozed off to sleep in Amy's arms... Claire slept in mine.   In the midst of holding this other beautiful child, rubbing her hand, and then looking over at Meagan peacefully sleeping on Amy, I realized what a gift these connections were going to continue to be in our life.

Looking back on that first day where we learned about Meagan's diagnosis, one of the best things I ever did was get on the internet and search.  I didn't really know what I was searching for.  An answer?  Some piece of information that would suddenly make all of it make sense?  No.  Those things weren't there.  Among the scary words, worrisome predictions and unknown outcomes, there was a whole new family just waiting for us.  And with family, anything is possible. 

Hydrocephalus is not what I expected for Meagan's journey in life.... but I now cannot picture our life without these other incredible people that this journey has brought us.. I am forever thankful to the group of Hydro families that originally reached out to me and offered me a glimmer of hope..I am thankful for their openness and all they offered us to help us prepare for such an unknown path..... and also thankful to those we have connected with since then who continue to renew that hope. 

There is an old song called "The Rainbow Connection."  I never really paid much attention to the lyrics until I started thinking about this post.  The chorus goes "Someday we'll find it... the rainbow connection. The lovers, the dreamers, and me." ... Well, if I do say so myself, I think we have found our 'rainbow connections' in our Hydro families.  No one else understands the 'down days', the worry, and the pain like they do... and no one else understands how truly wonderful it is to celebrate every blink of an eye, every smile, and every little moment that may seem insignificant to others. These families are connected to us now through Meagan.  And it is through these special connections where we hold the highest hope, feel the greatest peace, and experience the strongest love.

For more information on the families that first reached out to us, see their blog links below.  

 

Elisabeth's story: (Lisa)

http://donaldandlisasorensonfamily.blogspot.com/

Owen's story: (Michelle)

www.fetalhydrocaphlus.com

Claire's story: (Brad and Amy)

www.prayersforclaire.blogspot.com

Parker's story: (Amy)

http://www.i-am-pregnant.com/vip/turtlemom

Train Ride... or not.

I was very prepared for Meagan, in large part due to the wonderful Hydro families I communicate with online.  I talk with these families almost daily, and we truly have a special relationship, though many I have never met in person.  I knew there would be ups, downs, and everything in between.  I knew there could be great strides in development, and regression... and I knew that things may actually be "ok" later but Meagan may need more time.  I also learned that sometimes this is not the case.  I was honestly ready for any of it, any outcome, and any path Meagan chose to take. 

I tended to think of our journey like a train ride.  We all know trains. Especially if you've lived in a city.  There are so many stops.  Half the time, it is annoying to stop because you just want to get to your destination and get off the train already.....but it's out of your control, and minute after minute, you have to sit and wait at one stop after the other until you finally reach where you were going.

I think this week, I've experienced a few of those stops.  This past week, we were with a group of moms from my second oldest daughter's school.  A lot of these moms have younger kids, like me, and there happened to be a baby there Meagan's age.  The baby was sitting (supported) in her mom's lap... hitting her hands down on her mom's knees and laughing every time.  She was looking around, and bending forward trying to land on her hands and just having a grand old time.  I happened to look down at Meagan who I had "sitting" in my lap.  Her back was completely curved against me, looking like a curvy wet noodle.  Her head was hanging to the side, supported by my arm which was wrapped around her upper torso to prevent her from falling over.  She was looking, but not doing anything, and not really "interested" in her surroundings.

In that moment, I thought "Oh my..look at what that little girl is doing...she's Meagan's age..."  .. and then I immediately felt guilt right afterwards! I said to myself "What are you thinking? How can you compare Meagan? That is so wrong!" ... but it had happened. I did what I said I was never going to do.  And it was such a "natural" reaction... to look at this cute little 4 1/2 month old having a ball with her mom, and having Meagan slumped on my lap like a load of potatoes.  I couldn't believe I had let myself "go there."  I knew about Meagan's struggles.  I knew all she'd been through.  I  knew that one day, Meagan may do those things.. but she just needed time.  And I knew that perhaps, she wouldn't but I was ok with that and just loved her so much.  And I could not believe that I had just given such a 'snap' judgement of my situation...by my own thoughts!  How dare I think that way, especially after being so well prepared by other families. Meagan is so young, and I don't know where she will end up... and I had just judged her because I saw one happy little baby Meagan's age.  What was wrong with me?


Fast forward to Thursday night... Brian and I were sitting around, watching TV and just enjoying our "down time."  Suddenly, Meagan woke up out of her sleep and started having a seizure.  Oh boy.  "Seriously?" I thought.  It was so obvious this time, Brian even looked over and noticed.  And we are used to her seizures by now, so for us to take note that quickly was new.  It was a biggie.  I couldn't believe it.. we were at over 2 weeks with no seizures.  Friday night came - and bam.  Another seizure.  Then, today we went to Vigil Mass. Meagan was a little fussy, but I just thought it was something else. She'd eaten, been burped, changed, etc...  Then, my oldest daughter was standing next to me looking down at Meagan. She asked, "Mom, look at Meagan's eyes... is that a bad sign?"  I looked down and Meagans eyes looked so strange.  I knew immediately - it was the "pre seizure" eyes.  They started to flutter and roll, and I noticed this time that her pupils were huge, and then would go extremely small.. and the process would repeat all over again.  Then, sure enough, she had a 14 minute seizure during Mass.  The lady in front of us turned around, and stared...stared....at Meagan with a horrified look on her face.  Honestly, I can't blame her - I'm sure she just didn't know what was going on...but I still felt awkward. Why did I feel so awkward, so defensive?

The other family sitting in front of us had about a 2 month old baby.  The mom was playing with the baby, holding her up.  The baby was very alert, looking around, holding her head up well and really enjoying herself.  My oldest daughter tapped me on my shoulder again and asked "Mom, does that baby have Hydrocephalus?"  I said "No, honey, I don't think so."  She looked at me and said  with a huge sigh "Oh, good." .... It was then I realized that Meagan isn't the only one with 'stops' along the way.  Her condition is also weighing heavy on her sisters' minds..especially my oldest.  She is a worrier, and also very protective of Meagan.  As time goes on, she will adjust, but, it tugged at my heart to think she was so worried that other baby had the same condition as Meagan.


I remember hearing another special needs mom tell me "It's ok to be thankful and happy for your daughter's life... and at the same time, grieve the life you might have originally pictured for her when you found out you were pregnant.".. and after this week, I realize she is so right.  I think at that moment, watching that little girl in the moms group, or having my oldest ask me about the other baby at church, I realized that this is a process.  It's a process of letting go of what I had pictured for Meagan that I had projected onto her before she was born, and also a process of embracing who she really is by being open to whatever she does do, whether on time, late, or never. 

This week we have unfortunately had a few stops on our train.  It was weighing on me heavily yesterday.... The biggest thing that kept going through my mind is how I had actually "compared" Meagan to that other baby.  I felt like such a horrible mom!  And then I realized that I really can't look at our journey with Meagan like a train.  If I did that, it would be a never-ending ride we would be stuck on for life.  And that is not setting a good example for my other kids either.  That is not how I want to view Meagan's journey with our family.

 
I think instead of being on a train, I am going to view Meagan's life like an open book.  That way, when these incidents occur, I can not be annoyed that we are "stopping" or "pausing"... but rather can write it down as just a page in her book.   Like any novel, there will be happy pages and sad pages. I will write down Meagan's little accomplishments with great joy..but I will also write down the frustrating days.  And I have to promise to be honest with myself.  I know if I ever feel like I did at the moms group again, it's ok. Or if I ever feel defensive of someone staring, that's ok too.  It is nothing negative against others, or against Meagan's life... but just an emotion I'm going to have to go through at different levels to live the truth of Meagan's story.  No matter the page we may be on at a given time, though, I know there is another one we can turn anew.  What that next page is, I won't know.  But what I do know is that with her book being open, anything is possible....

I Knew It

So I ordered Meagan's full records from her Neurology practice.  After having several conversations with them where I kept getting bits of inaccurate information, I decided to pull her records so we had the freedom to look into other practices.  I was reading through Meagan's EEG reports, and found something very interesting.

The Neurology office had reported to us she was having multifocal tonic/clonic seizures.  Now, what did I know.. but.. I just didn't think that sounded "exactly" right... because while Meagan was definitely seizing, she was nowhere near having what is also referred to as a "grand mal" seizures... in layman's terms.. the typical "as seen on TV" seizure that is what one typically thinks of when hearing the word "seizure."  But I had put that to rest because the only thing that mattered was that #1 - I knew she was having seizures... and #2 - treating those accordingly.

In the EEG report, however, it said: Epileptiform activity consisting of sharp waves in the left posterior temporal region.  Discharges sometimes activated by sleep.  These findings suggest epileptic activity of a partial nature and correlate to seizures of a partial classification.

In other words, Meagan is having partial seizures, not tonic/clonic seizures.  Based on what Meagan does clinically, she has both simple and complex partials.  For more information on what partial seizures are, click here: http://www.epilepsyfoundation.org/aboutepilepsy/seizures/partialseizures/index.cfm?gclid=CJLfgrz0-60CFY9W7AodoFCiQQ

I kind of already "knew" this because what she does clinically is SO much like a partial seizure, that was the first thing that popped in my mind.  So now I"m glad I actually have the official information confirming that thought. 

I guess the lesson is - always order the records and read for yourself. Grrrr.

Beautiful

Beautiful is one of those words that we hear all the time... kind of like "love."  It is often used in many contexts, thrown around like the wind and overused... and yes... meaningless at times because of these things.  But it truly is a word that fascinates me.  What is "beautiful?" Despite all its overuse, I think I found its true meaning when I looked at my sweet girl in my arms tonight.

Meagan had a pretty sleepy day.  She was awake for a few minutes here and there, and in these times was alert.  I sat her up on my knees and just looked at her.  I started looking at her hair - it is so thick.  It has a rich dark brown color and on the ends, she is even starting to get these crazy curls.  Then I looked at her eyebrows.. they are so inquisitive.  They raise up when she looks at me, and get stern when she doesn't feel well.  Her eyes of course are just like her sisters'... so big.  They seem to take in all they can from her surroundings.  Meagan has the tiniest cutest little nose... and her lips and mouth are also tiny and almost look 'painted' on her face.  Overall, Meagan has very delicate features.  I loved just sitting there looking at her face and all the stories every little part of that face was telling me.

People tell me all the time "Meagan is so beautiful."  Especially nurses or doctors that we have had to work with over prolonged periods of time.  Her Neurosurgeon said the other day "Oh Meagan you are so beautiful," following which he picked her up and gave her kisses on her head and snuggled her.  Family and friends will drop me a note and tell me "Oh Meagan is so beautiful in her latest picture."    I must say I have agreed with all of these people... a lot of that is because I'm her mom - of course I think she's beautiful, as I also think my other girls are beautiful...and as any mom would about her child. Today, out of curiosity, I decided to look up the 'real' definition of beautiful.

 According to the dictionary beautiful means: 1. Pleasing the sense or mind aesthetically and 2. of a very high standard; excellent.   I have definitely been thinking more of the first definition.  Her little features, her dark hair, her delicate being - it was aesthetically pleasing to look at my sweet baby and all the things that made her beautiful.  But the more and more I sat with her today, I realized I was ignoring half of the definition of beautiful that I read tonight.  Sure, I may think Meagan is beautiful on the outside, but I think I was missing the point.

I then started to think about everything she's been through in her mere 4 months on Earth: a risky birth, brain surgery at 3 days old, 4 shunt adjustments, seizures, 3 hospitalizations, 6 ER visits, Bronchilitis, shunt swelling, vomiting, pressure, pain and countless needle sticks. I started to think about how much that was for such a tiny body, such a tiny person....then I looked down at Meagan laying on my knees.  Her physical beauty was apparent, but then it was clear to me she embodied the whole definition of beautiful. 

Meagan is the least judgemental person I know. She however, has probably been the most judged by others. She has been doubted the most.  She has been dismissed the most.  And yet here she is.  Making her own path...working through her challenges...and surprising me everyday. The doctors who judged her life before she even started living it didnt' know what they were dealing with.  Meagan truly is the second half of beautiful:  "of a higher standard; excellent."  She is of a higher standard than those who chose to dismiss her existence...and she is doing excellent despite expert opinions, medical degrees, or doubting bystandards who said otherwise.

So as I sit here tonight, do I notice Meagan's dark thick hair? Do I study her eyes and her long lashes? Do I ponder her delicate nose and lips? Of course.  But I smile at her excellenece to push forward.  I am in awe of her higher standard of life... to take setback after setback and smile her way through them all.  And I am certainly one proud Mama of a truly beautiful little baby girl.  Next time I am curious about the full meaning of beautiful, I know I don't have to look it up, or search on Google, or pull out my dictionary.  I can just look at Meagan.

Riding the Wave

Well it's been quite an adventurous few days for Meagan.  But when isn't it?

We were so happy last week - Meagan's seizures seemed to be under control.  It was almost 10 days with NO seizure activity! The Keppra was working!! We had the best smiling picture EVER a week ago Monday... and she was smiley the entire day.  It was such a great day for Meagan.

Meagan continued to have a great week... I did notice this past weekend, though, that her shunt site was quite poofy. This struck me as odd because her shunt site had only ever swelled before when she was on a higher shunt setting.  This time, she was back at her normal 1.5 flow level.. a setting she had always tolerated well and never swelled or reacted to.  She was still acting ok, though, so I just watched it.

Monday came and she was a bit more fussy.  She had her 4 month check up that day, and everything checked out fine.  Ears clear, overall healthy and nothing clinical that stood out to the Pediatrician.  I chalked it up to random fussiness and we went home.  She continued to be fussy that night and so we were up quite a bit with her.

Tuesday morning came - I was getting the girls ready to go to school.  Meagan had eaten at 5am, and it was about 8am at this point.  She was lounging, fussing here and there, but basically happy.  All of a sudden, I looked over at her, and she vomited.  EVERYWHERE.  Even my 5 year old said "EWWW!"  I watched her and it happened again - it literally looked like someone had a hose pointed out of her mouth... it was projectile and liquid and A LOT.  "Oh no" was my first thought because projectile vomiting is a huge symptom of a shunt malfunction or failure.... but perhaps it was just a random occurance.  So I waited... 8:35am... and it happened again.  Ok, now I was officially worried.

Otherwise, Meagan seemed "ok" ... so I piled us into the car, and we left to get Kaitlin to school.  When we got home, she didn't get sick again....for a while.  Around lunchtime, it happened again though.  Projectile. Everywhere. As a mom, especially with many kids, you never want that infamous "stomach flu" to come near your home.  But when you are a mom of a shunted baby, and the baby is projectile vomiting, you realize how quickly you actually pray it IS "just" the stomach flu.  It is better than the alternative.

I decided to call the Neurosurgeon's office that afternoon because I was starting to become concerned about Meagan's shunt now...especially with it being so puffy even on a low setting.  I continued with our day, waiting for a callback.  Finally, our NSG's PA called me back.  She talked to me about Meagan, the vomiting, Meagan's mood/behavior...etc...  We both decided that she was ok to watch for the night and come in the next day if she hadn't improved. 

Let's just say, I knew early on in the night I'd be calling the next morning. To start off, Meagan had a 4 minute seizure - after not having one for over 10 days. So I figured something was going on. Meagan had a horrible night.  She threw up a few more times, and she was extremely fussy.  She (and I) slept maybe a total of one hour.  Her shunt site was very puffy and swollen and she was eating in shorter spurts.  I dropped Kate off at school again and called the NSG office.  They were excellent about working Meagan right in for a morning appointment. 

We arrived at the NSG office.  We checked in, got called back, and saw the PA.  She looked at Meagan's shunt site, talked with me about Meagan's symptoms the day before and the previous night, and decided to send Meagan for a CT scan to double check her ventricle size.  Meagan made it a pretty easy decision ... she was fussy even in the office.....and during the PA's exam, she continued to wimper and fuss.  I put Meagan back in her seat and we headed across the street to the hospital.

After about a 45 minute wait, they got Meagan back for her CT scan.  Once it was finished, we walked back across the street to the NSG's office.  WIthin a few minutes we were called back to a room again and the PA came in.  She went over Meagan's scan with us and explained that Meagan's ventricles seemed to be stable (ie: not growing larger) and she would get the NSG to come in and talk with us further.

Meagan's NSG came in.  He was very apologetic for us having to come in - almost as if he felt badly things weren't going "perfectly".... it isn't his "fault" at all, as these things can change in a heartbeat.. however, I appreciated his sentiment.  It felt good to know he strived for 'perfection' in his work and didn't want us to be returning with problems.
  He talked about her scan with me.... while it showed no increase in ventricles, there was also no decrease compared to her scan back in October. This isn't necessarily a "good" or "bad" thing. Yes, ultimately we'd like her ventricles to shrink to allow more brain growth...but at the same time, some Hydro kids have ventricles that just stay the same.  In some kids, they are stretched so much with fluid that they reach a point where they don't shrink anymore.  However, it is something to watch because the ventricles staying the same could also mean that they are starting to grow again but we are just a little "ahead" of the shunt problem.  So it's really a toss up as to how it will play out (as is the story with Hydrocephalus.)

Her head circumference was up 1.5cm, but because of the ventricles staying the same, he attributed her head growth (for now) to normal growth and said we will keep an eye on it.

The NSG said he was very concerned about Meagan's shunt puffiness. This made me worry a little because you have to understand something - even when I *should* worry about something with Meagan, her NSG is VERY positive.  Not one time even since we met with him prior to her birth has he ever used the word "concerned" with me.  As a matter of fact, he seems very very careful as to when he applies the use of that word.  So when I heard "I am very concerned about her shunt swelling...." it did catch my attention.  I filed it away to remember for down the road.  He examined Meagan's head and shunt area....and he was able to 'milk' some the fluid out (by pressing his hand firmly on her shunt valve and pushing the fluid down into her catheter).  He asked me to continue that at home to see if I could help facilitate the flow of the CSF into her shunt tract so perhaps it will relieve some of the swelling.

The NSG also turned her down again to her lowest setting (fastest flow) ever.  Meagan had been at a 1.5 setting early on.  Last Fall he tried to turn it up to 2.  She tolerated it for a few days, but then started to not eat well and be very fussy.  Her shunt site also became really swollen so she had to have it turned down to 1.5 again.  At her last neurosurgery check up earlier this month, the NSG had once again tried to turn it up to 2 (because her sutures were severely overriding) and wanted to see if she would tolerate it this time around (to stretch the bones apart again to allow for more brain growth).  Sure enough, we were back in the office a few days later because her fontenal was bulging and she was very fussy.  Her shunt site had also swelled up a lot, so she was once again turned back down to 1.5  Now, even with Meagan still being at 1.5, which has always been her "comfort" level shunt setting, the site was very puffy and starting to swell again.  The NSG said he thinks it *may* be the start of a shunt problem.... But since Meagan is still eating ok and has intermittant smiling and alert times still, in between fussiness, and since her vomiting had subsided,  he didn't want to take her back to the OR. This is why he would turn down the shunt even further to see if that helps first. So Meagan is now at the setting of 1...the fastest flow (lowest setting) she has ever had.

The NSG said hopefully this faster flow helps. He said if by chance it doesn't, at least it buys us time so she would be that much older for surgery. He said of course if her behavior worsens a lot, if she vomits again excessively, or if she ever stops eating or becomes listless to call back and they will re-evaluate the plan. He was very thorough and said he was glad we came in. He even held Meagan for a few minutes at the end and gave her lots of kisses.  He is an excellent surgeon...and also a wonderful man.

While it wasn't exactly the answer I wanted to hear, it was also a good thing we avoided the OR for now.  I appreciate his approach with Meagan....being pro-active but balancing that with a conservative treatment plan.  I know if Meagan ever had a shunt emergency, he would act and help her immediately...but for now we're going to "ride the wave" of the shunt functioning properly and see where it takes us in the next few months.  I'm really hoping the faster flow helps - but in the back of my mind, I'm preparing myself for Meagan to possibly have another surgery.  This was not unexpected, but, nonetheless, it is a lot.  Here's to hoping that the wave takes us a gold medal distance.  I would really hate to see Meagan thrown back into brain surgery when she is finally doing so well with her seizures and other setbacks she has recently experienced. 

Love you Meagan.  Stay strong and let's hope we can avoid another surgery, and that this shunt can ride the wave for many, many months to come.