Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, February 24, 2012

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.

Thursday, February 23, 2012

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.

Monday, February 20, 2012

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

Monday, February 13, 2012


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)

Owen's story: (Michelle)

Claire's story: (Brad and Amy)

Parker's story: (Amy)

Saturday, February 4, 2012

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....