Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, November 30, 2011

Say What?

Tuesday was a pretty normal day.  For once, I was actually home to go back and teach Drama Club ... we did the normal drop offs and pick ups from carpools ... and everything else seemed in order.  Imagine my surprise when the phone rang at almost 5pm... and when I looked at the caller ID, I saw "Child Neurology."  My first thought was "Oh no! Did I miss an appointment?" ... we've had so many lately .. and with 2 phones now having failed on me, my up to date calendar wasn't so up to date. 

I answered the phone call and the Nurse on the phone asked for Meagan's parent... I replied "Yes, this is her mom" ... she then said "We have Meagan's EEG results.  It showed seizure activity and so Dr. Zurbrugg would like to see you to discuss the readings and talk about medications."  Pause. I felt like I was in a twilight zone.  Excuse me? Didn't we just put this to rest a few weeks ago? The Nurse then continued.. "He would really like to squeeze you all in tomorrow if you can come."  I snapped back to reality - and of course.. .the only opening was right when I normally teach.  Of course Meagan is more important than anything, so there was no hesitation to cancel my students and get Meagan in to see the Neuro .. but I had already cancelled students the week before Thanksgiving, so I just felt badly.  I told the Nurse I would take the appointment and hung up rather confused, relieved, upset, and anxious all at once.  How could they have missed this? The last thing I was told was that everything seemed to be ok.  I was confused as to why we hadn't been called ... relieved because I knew all along seizures were the culprit .... upset because Meagan had now gone 2 more weeks suffering through her episodes ... and anxious to get into the appointment and talk about the next step.


Fast forward to the next morning, Wednesday (today) - it couldn't have come fast enough..  The one good thing about me originally having to teach was that I already had a sitter lined up - once she came, I left and Brian met me at the Neuro office.  We checked in and waited to see the doctor.

Now, Meagan had been seen by this practice when she was still in the NICU.  The two doctors that saw her seemed nice, but, I hadn't really built a 'repor' with them at all.  The NICU staff told us to go ahead and make a follow up appointment with the Neuro practice so after she was discharged, she was already "grandfathered" in to the practice.. otherwise, the wait would be VERY long as the Neuro practices are often very busy and overbooked.  I'm so glad we did this now in hindsight, or else we may have been waiting a lot longer to get in to see a Neuro at all. 

There was one new doctor to the practice - he had come out of retirement to practice again, and because the other Neuros were so overloaded with patients, Meagan was assigned to this "new" doctor.  However, when she started having seizure-like activity a few weeks ago that seemed to increase, they wanted to get her in for an EEG, so we got put with another doctor temporarily.  While I'm grateful this other doctor got her in for the EEG, and then admitted her for the 2 day EEG, I'm more grateful that Meagan stayed on the roster of her original Neuro ...the one we ended up seeing ....  because he is the one who decided to actually go back and read her EEG tracings and reports... which is what ended up leading to the phone call we received Tuesday night.

We finally got back to the exam room... the Neuro seemed like a nice guy.  I got a good "sense" from him as soon as we entered the room.  He looked about my dad's age .. and kind of looked like him too.. right down to the New Balance running shoes. Dr. Zurbrugg introduced himself and then met Meagan for the first time.  "Is this your little bunny?" he said.  Little Bunny. Hilarious. But I liked it. "Yes" we said.  Dr. Z then continued to talk to us about her results.  When I asked why we hadn't been talked to sooner, he said he didnt' know ... he was relatively new to the practice and didn't know why we hadn't been notified about the EEG reports.  He said he had read them yesterday, and that's why he called us to come in. 

Before Dr. Z started to get into Meagan's EEG results, he reached over to his desk and handed Brian a pen.  Now, we have a binder that has all Meagan's information since I was 20 weeks pregnant ... and we always write everything down... but it was so nice to see the doctor initiating the offer to record the information he was about to share with us.  My good sense about him was confirmed. 

Once we were ready to write, he continued ... he said Meagan's EEGs (both the 48 minute in-office and 2 day in-hospital tracings) showed seizure activity.  Dr. Z told us it was mostly coming from her left side, (which made sense to me because her left ventricle had been the largest, and, I see most of the shaking and convulsions in the right side of her body) ... but Dr. Z went on to say there was also a little activity from her right side.  He said it seemed to be originating from her temporal lobe.  This makes total sense because this is where we process emotion and reaction... and often these seizures start with a sudden sense of fear or a tensing of the abdomen.  This describes exactly how Meagan's seizures start.  She will suddenly wimper, cry, or scream out - as if afraid, in pain, or shocked... then the shaking in her right arms starts, then both arms, head, and legs.  Then as quickly as it starts, she will suddenly put her head back, her eyes will roll, and she will pass out asleep.

WIth the help of the video monitored EEG, they could finally see these seizures morph into her head, hands, arms, and sometimes legs.  Based on the video images coupled with the EEG tracings, Meagan was diagnosed with multifocal tonic clonic seizures. I know sometimes Meagan stiffens her legs, but, I was a little confused by this term because Meagan doesn't have the typical "as seen on TV" seizures.  Tonic/clonic are more like "grand mal" .. or the "all over" seizure.  Hers seem more "calm"....but...what do I know.  Perhaps I don't fully understand the terms he was talking about.    Dr. Z said his main goal would be to minimize or eliminate her clinical seizures so she could be comfortable and also get them under control so her development could continue to progress.  He said that seizures often beget seizures.  In his opinion, there was not an option to leave them untreated, especially with how hers seemed to cluster at times.

We knew the medication talk was coming next.  We had received a lot of input on meds from several other families we talk to.  Some kids responded well to the tried and true Phenobarb... while some had reactions to it and ended up being endlessly tired and sedated.  Some kids responded well to Keppra, a newer drug which didn't have the sedative quality of Phenobarb .. but some others had an awful experience on it.  It was clear to us that before we even went in today, we were going to have to listen to what the doctor said, take our opinions, and all the advice we had recieved from other families and put them all together to make some sort of medication decision. Luckily, Dr. Z seemed to have a similar philosophy. 

Dr. Z laid out all the medication information.. the different types, all the possible side effects, effectiveness of the medications in her type of seizures, etc.  He did recommend starting with Phenobarb and going from there.. if we felt she was acting too sedated, we could just call him and he'd switch her medication.  A lot of seizure treatment is trial and error, so he said for us to be open to many options as things can change.  After much discussion, we felt comfortable with a decision - to start on the Phenobarb as he suggested, and take it a day at a time.  We felt Dr. Z was open enough with us, and really making an effort to work WITH us... so we did value his opinion.  The last thing we wanted was Meagan seizing several times a day - being uncomfortable, and with no end in sight.  We got the prescription and finished talking with Dr. Z.  He continued to explain things to us and listened to every question we asked.  He gave us websites and sources to read ... and spelled out terms we should look up.  He stayed over a half hour after the office had closed to finish our conversation.  We were very happy with him when we left the office. "You got that Bunny all bundled up?" ... yep.. this was a doctor with whom I could build a repor.

So now, here we are.... Mommy gut - 3, Hydrocephalus - 0.  This one is a score I hate to have - because it means my daughter is having seizures.  But... in a strange way, this confirmation is relieving .. because I KNEW.. I just KNEW deep down that seizures were exactly what had been happening.  So as disheartening as it was, in another sense, it was good to have "closure" and to be able to move forward with ways to help Meagan feel better.

  Dr. Z said something today that will definitely stick with me.  He said "She's Meagan... she has seizures. She's still Meagan.  We just have to take a day at a time. Just one day after another."  And he's right.  Meagan is perfect.. she's the most perfect person she is SUPPOSED to be .. Hydrocephalus, seizures, and whatever else is in her future... it's just who she is meant to be.  None of these things define her ... but they are PART of her.  And that's just life.  As a famous movie character said ... "life is a box of chocolates.. you never know what you're gonna get." ...and that is so true.  But I'd like to add, that no matter what you do get, it's still chocolate and it's still sweet.  And that's Meagan.  Her seizures are just another variable we'll have to deal with... but she's still her sweet self, and always will be.

If it means more sleepless nights of snuggling to make her more comfortable, I'll do it.

My sweetie

Tuesday, November 29, 2011

Sometimes, *Sometimes*, Seeing Is Believing

Now let's not get carried away with my title of this post .... of course, seeing is not believing.  We believe in God, yet we don't necessarily "see" Him... we know He is there, though.  We believe in the Holy Spirit, the Saints and Angels are around, protecting us, guiding us, and being our intercessors for our prayers to God.. but we don't "see" them.  We believe our faith is good, worthy, and true... but we cannot "see" our faith. We believe people are generally good, but don't often get to witness "proof" of this. And in this case specifically, we believe Meagan's brain  is regaining some of the abilities that 'normal' babies have from the day they were born.  We cannot see these abilities in her brain growth, but we believe they are there.  However, *sometimes*, seeing is believing.  Sometimes, we get a little glimpse of a visible sign that what we believe is 'working,' or is actually real.

Meagan has been 'staring' for quite some time now.  That is really the best way to describe how she 'looked' at things.  She simply stared off into space.  Nothing would change her focus - not a toy, my face, a black and white toy, lights, etc.  I was starting to get frustrated.. not at Meagan, but, at the whole situation.  I remembered my other children at 10 weeks old.  They looked around at actual things... they responded to people's faces, especially mine, being around them all the time .... they looked to light, toys, and reacted to noise.  I was frustrated for Meagan that none of this seemed to be happening.  I understood she would need more time for even the simplest milestones, but, I was feeling disappointment that I could not look at my baby and have her recognize me, let alone make her smile. I also began to worry because her vision doctor had said Meagan's optic nerves were short... she may have vision issues and we needed to watch it.  Then, in the last few weeks, she started doing something new.

One night, when I was up with Meagan changing her diaper, I walked over to our bathroom and flipped on the light.  Meagan was laying on my bed, on her back, and her head had been straight up - eyes staring at the ceiling.  As soon as the light illuminated our pitch black room, I saw her eyes slowly find their way toward the direction of the light and then stop. She stared... at the light.  I was excited! But afraid it was a coincidence... so I turned the light off.  Meagans eyes wandered.  I turned it on again, and her eyes found the light and stared. I knew she was seeing. 

This continued over the last few weeks, but I still wasn't getting any response when I would lay close to her.  Sometimes I would lay right in front of her face and her eyes would wander all over.  It almost looked like she was trying not to look at me - that's how much her eyes were rolling.  They would also cross a lot and could not focus.  I knew she could see stark contrasts, like the bathroom light in my dark room, but, she was not yet focusing on much up close. 

My parents were visiting over Thanksgiving, and picked up a few black and white toys for Meagan, which was a great idea so we could keep the contrasts to a minimum and try to get her to focus.  I held the toys in front of her, moved them at different angles, and made noises to get her attention. No change.  I thought, ok, with time it will come... but was a little disappointed she did not seem to focus on any of the toys.  I tried laying with her - and her eyes were in my direction, but certainly not looking at me.  They were looking to one side, then to the other.. then it was almost as if she'd stare right through me... there was no focus, and she was just in her own little world. I was sad.  I just wanted my little girl to look at me. Just once.

Of course, all of this was during Meagan's "fussy time" ... when her shunt had been slowed, and she really started to deteriorate in personality and behavior.  She was more drowsy and lethargic.. had less awake times... wasn't nursing well and when she did, would cry or wimper ... and she also would break out in sharp, high pitched cries in the middle of sleep, like she had a sudden stabbing pain.  Once we started to notice her head swelling, and her fluid pockets puckering out from between her sutures,  I was pretty sure the shunt setting was our problem.  As I described in the last blog entry, we had it reprogrammed late Saturday night, and she seemed to be a lot better by Sunday.

Meagan was having so many more 'awake' times on Sunday... this trend continued into Monday.  By Monday evening, she was happy, had eaten well, and was extremely alert.  It got me thinking ... I wonder if she would focus on a toy now that her head is feeling better.  I got out the Panda my parents had picked up -- I held it near her head, just slightly to the side of her line of vision. No reaction. Played the music and the sounds on the Panda. No reaction.  Hmmm.. so I tried holding it directly in front of her... and suddenly, I noticed her eyes cross... but.. then they uncrossed! She had the funniest look on her face, and pursed her mouth into a little pucker, almost as if she was saying "Oh!"  She was looking at the Panda!! I took the Panda away... she stared into space.. then I put it in front of her face again - and same reaction! Yippee.  We had about 1-3 seconds of focusing each time.

Now came the 'real' test.  I laid down next to Meagan.. right in front of her face.  At first, nothing.  Then, I noticed her eyes crossing again - she was trying to focus! I moved back just a little bit... and then, she looked right at me.  She stayed focused for a good 3 seconds, and then had wandering eyes .. but.. then she looked BACK at me. Her mouth went in that pucker, and her eyebrows raised up as if she recognized me.   I could see in her eyes the "studying" that was going on - she was not looking through me...for the first time in 10 weeks, my baby was finally looking AT me.  "I'm your Mommy, Meagan.. nice to meet you finally" I said to her.  Then it hit me.

Of course she knew I was her Mommy.  I was the one who carried her inside for almost 9 months.  I was the one who kept her there when others thought her life was worthless.  I was the one who first kissed her head as she was whisked away to be Baptized, Confirmed, and then transferred.  I was the one who pushed myself through the pain to get out of the hospital in 2 days after a c-section to race to Children's and hold her for the first time for only10 minutes as she went to her brain surgery. I was the one who painstakingly sat in the NICU for 4 weeks, everyday, 8 hours a day, just to hold her.  I was the one who didn't give up on her eating.  I was the one who listened to her signals and knew she was ready to start nursing. I was the one who snuggled her all night when she didn't sleep.

As exhilerating as it was to have Meagan look at me for the first time last night, I learned a greater lesson from her.  Meagan was telling me she didn't need to see me for 10 weeks to know I was her Mommy. Whether she literally saw me or not didn't ever matter.  What mattered was my love for her.. because that is something she would know always.   I realized this morning, that Meagan didn't 'see' me for the first time last night.. she recognized me. She had always believed I was her Mommy ... and now her blind faith had paid off. 

Thank you Meagan, for always reminding me of what is important.  While watching you conquer a milestone last night was wonderful, I was so worried about you seeing, that I missed seeing your faith in me.  God always says for us to have the faith of a little child ... and now I know why.

Sunday, November 27, 2011


I meant to post this last month.. but got busy with Meagan's little "hiccups" with her EEG and shunt issues....  It is a testimony I was asked to write by a very special group of ladies. They are fellow Catholic women who run a blog called http://www.catholicsistas.com/  .   They cover a wide variety of topics, and being that October is Respect Life month, they asked several Catholic women they know to write testimonies to life from different circumstances... here is the link to ours:


"Mommy gut" - 2. Hydrocephalus - 0

I always heard people talk about "mommy gut" growing up.  Just that nagging, inevitable feeling that 'something' was wrong with one's child... whether mild or serious, physical or emotional, etc.  I have definitely come to learn through Meagan that no truer words were ever spoken!

After her fussiness continuing and her fontanel not relaxing, my "mommy gut" went on high alert.  I noticed Meagan's sutures were spreading further apart.. and something just did not seem right.  Her shunt site, while normally swollen, was more swollen than ever and even had puffiness down behind the base of her ear into her neck.  She'd been a complete fuss today, and would only nurse for 5 minutes a feeding, then getting really upset, and would then start all over again.  She was even starting to wince and do a high pitched cry if we even ran our fingers gently along her suture lines where the fluid was gathering, so I decided to call the NSG.

The NSG called back within 5 minutes of me leaving a message with the answering service.  He said that with the seperation of the sutures and her mood swings, he'd really like to see her to make sure everything was ok.  I asked if it was something that "could" wait until Monday, even if she was irritable.  He said, "No," ... and at the latest he'd want to see her tomorrow morning.. but if we could come in tonight that would probably be best all around.

My parents have been visiting for Thanksgiving.. and leave in the morning, so we figured, might as well do as he advised and go in tonight because at least if we do have to be there a little while, my parents would be home with the girls.  So we packed our bag and Meagan's records and headed into Children's.

The nurses got us checked in quickly, and were extremely cautious of having Meagan wait in the waiting room because of possible sick kids sitting there.  They moved her into a room to wait, instead of being around everyone else.  I appreciated this because we definitely don't need any new germs in addition to everything else!

After the nurse got all her vitals and did the usual check in process, Meagan did have another CT Scan.  I asked about skipping it.. but.. it was really needed to see how the fluid had changed because that's how they could best make their decision to decide what was really going on with her.  I was very happy, though, that the doctor decided against the shunt series x-rays.  He said the CT would really be enough in this situation, so why expose her more with the x-rays.  I was happy about this because I know she'll have enough exposure in her life, so I appreciated the doctors cautious approach. 

Her CT scan showed what I had felt in my gut - her head was very swollen and her ventricles were enlarged.  The NSG saw the scans and decided a reprogram of her shunt was definitely necessary.  He came in with the magnets and turned her shunt up (which decreases the pressure = increases the fluid flow).  He told us that he was glad we brought her in - she did look quite uncomfortable and her head was swollen especially where the sutures were splitting.  He said considering she had recently had a shunt change, the pressure difference was MOST likely the culprit in her discomfort and ventricle enlargement.  He said if this was the case, we should see a big difference in her head, mood, eating, and overall appearance by tomorrow afternoon already. 

If nothing changes by tomorrow afternoon, then we are supposed to bring her back in because the next 'hunch' is that there is a blockage in the shunt, so they will have to go about that a different way.  I'm really hoping the shunt pressure is the culprit, because if so, they solved that issue tonight by changing her shunt setting.  This would be the best case scenerio for this latest hurdle we've jumped over. Meagan's had enough sleepiness, discomfort and pain this week... but the one "good thing" is at least I know she is great at communicating her pain level to me in her own way.  She was certainly fussing these last two days for a reason, I now know....  and was saying "Mommy, my head is hurting!"  This will help me care for her in the future... if she ever acts like this again, I will have a big clue as to what is going on and will know to call her NSG right away.

So all you mommys out there, definitely listen to that gut feeling you have! If you feel something isn't right with your child, even if you can't pinpoint the details, listen to that feeling! You are probably right! Never let any friend, family member, or doctor make you second guess that 'mommy gut' ... I think we have it for a reason. It was God's little gift to us in a lifetime of worry about our children - his built in 'warning system' so we don't always have to just wonder if something is going on.  It helps us seek the best care for our kids.
Mommy gut - 2, Hydrocephalus - 0.  I'm going for a shutout on this journey..... and Meagan, we make a good team.... we can do it! Love you baby and I hope you are back to your big happy self tomorrow afternoon!.

**** Quick Update (9:30am) - I don't want to speak too soon, but Meagan already seems so much happier this morning! She is not wimpering while she eats anymore.. she is eating her full 20 minutes nice and quietly... her fontanel is sunken and soft again ... her shunt site is still puffy, but, it's so much more squishy ... Meagan calms down easily and is resting well this morning ... and when she woke up to eat she wasn't fussing or crying.. she was just her normal alert self looking around. Fingers crossed the reprogram did the trick and got us over this shunt hurdle! Hoping to see this good mood continue through the day!

Saturday, November 26, 2011

Wonder What She's Feeling

Yep.. this picture has pretty much described the last few nights for Miss Meagan.  Not really sure what is up with her -- she does have periods of calm, but, she is a lot more drowsy.  She just seems to be feeling "off" and perhaps a little uncomfortable.  She has been more irritable than calm, won't sleep comfortably even when I hold her, and she is sleeping or fussing more than having alert times.
I'm sure part of it is due to her pressure change in her shunt this past week ... plus she had that cold which now left her with a slightly stuffy nose.  On top of all that, she did just get her 2 month shots 4 days ago, so perhaps all of this together is causing her fussiness and irritability.
Of course, being a Hydro mom, I watch her head circumference, shunt site, and fontanelle like crazy ... her head circumgerence has gone up 2 cm... however, I can't really gauge anything off of that because her shunt flow was slowed - so of course, we expected some circumference growth. Her shunt site also has looked very poofy - again, something I can't freak out about because it is staying relatively squishy, but it is still incredibly swollen with fluid.  However just in the last day, I've noticed that now her fontanelle is a lot more firm than normal.  Certainly not bulging out, but definitely more firm.. where it feels like it 'almost' has a slight pocket pushing outward.  So I'm going to keep watching that.  If it doesn't get more relaxed in the next day or so I'll be calling the NSG for a double check.  I don't want worry too much because it's probably fine... but I also don't want to second guess myself into overlooking a potential problem.

Shunt site

Resting in my arms ... I need to start alternating the sides she sleeps on because you can see her left side  is starting to get larger than her right.  Also, her head growth is apparent in this picture compared to pictures from, say, 3 weeks ago.

Wednesday, November 23, 2011


Despite all of the frustrations, we are ever so thankful to have Miss Meagan with us.  This Thanksgiving season, we have intense gratitude in our hearts for Meagan's life and are over the moon that we were chosen to be her parents.  She is such a special little girl... so sweet, so beautiful, and so amazing.  She unites our family in a way I thought was not possible... and I know she will continue to teach important lessons to not only us, but the medical professionals she sees. 

I am also thankful for our family.  Meagan brings such joy into our lives - but, let's face it - she also adds a lot of stress to our family. And so far, everyone has taken it in stride. There are tough times, but I think we will wade through them ok.

Reilly, my oldest, has felt most of this stress.  I, being an oldest child myself, understand the burden we sometimes put on ourselves.. but Reilly has it times 100.  She said she feels stressed with other people sometimes ask about Meagan because her first thought is that I'm back in the hospital with Meagan and she doesn't know it.  She says she gets worried when people ask because she is afraid I won't be there when she gets home from school.  I appreciate her worry - and I also am trying to teach her that this is our life now - Meagan is here to stay, and so some things like that won't be the same... however, I'm also teaching her that it's ok to not answer questions.  It's ok to say "I don't want to talk about Meagan."  She is 6.. and while she is a smart little girl, and could probably go off to grad school tomorrow, I really just want her to be 6 and enjoy Meagan - not live in worry about her. I am so thankful for Reilly - she was my first - my baby who taught me everything from patience, to frustration, and most importantly love.  She paved the way for me to be a mother.

Kaitlin, my second born is quite the comedian.  She has the sarcasm of a 30 year old.. but she is 5.  I'm trying to walk the line of disciplining her when it comes out more like "sass"... but also trying to encourage her to use her humor.  It's such an important part of life.  Where Reilly is intensely serious, Kaitlin can be intensely funny.  Her humor has helped us deal with so many of Meagan's issues.  Kaitlin, by chance, has the largest head of my normal children - she got the lovely big round head of my mom's side of the family.  So she will joke now that Meagan has taken her place -- I have to laugh, because, this is how Kaitlin is dealing with the stress of Meagan.  And why not -- we have so many ups and downs with Meagan's Hydrocephalus, and will continue to do so, what does it hurt to laugh a little.  Kaitlin reminds us of this everyday, and even though she pushes it sometimes, I'm so thankful for her sense of humor.  Sometimes, when things are stressful, the best lessons in humor and taking life in stride can come from this little 5 year old!

Anna, my third, is basically my twin. In. Every. Way.  Lord help us.  She is independent beyond her years... she can play nicely by herself, and entertain herself.. even if her sisters have everyone else involved in another game.  Anna is also my clone.. she looks JUST like me when I was a child.  She is a total "mommy's girl"... so there was a worry when Meagan was born because although she already has a little sister, she wasn't as 'needy' as Meagan.  Anna has had no problems, though, adjusting to the shift of attention.  She somehow recognizes the times when Meagan needs Mommy more than she does... and she takes her independent self, and plays on her own.  Her independence is such a gift because it enables her to be 'ok' having to do something on her own - this is an attribute that will do well by her as she gets older especially.  I'm so thankful for my Anna - so sweet and in many ways, rough around the edges... but she is so loving.  And I'm so thankful that she is able to have the maturity to harness her independence when we need her to most.

Maura, the fourth, is a mess.  That's the best, most accurate, and most loving way I can describe this child.  :)  She is so very helpful and so affectionate, that sometimes, it almost crosses that line and gets her into trouble.  She calls Meagan "Baby."  If I say "Maura, say Meagan!" ... Maura says "Baby!"  Maura knows where Meagan's shunt site is... she always points to it and says "Baby owwwie" and then will kiss Meagan on the head.  She is absolutely, 110%, head over heels in LOVE with her baby sister.  This is more than I could have asked for because Maura has never been a big sister yet... and the transition with Meagan was going to be a "little" different than it had been for my older girls when a new baby was born.  But Maura has just marched right along and bulled her way through any trying times.  She has come through all of this amazingly, and I'm so thankful for her strength and her tolerance. 

Dudley our dog also deserves some acknowledgement.  Yes, he's a dog. But.. he is such an integral part of this family.  We got Dudley when I was almost 8 months pregnant with Reilly, our oldest.  Matter of fact, when we went to the farm where the breeder was to pick him out, I wore a HUGE large sweatshirt because I was afraid if the breeders saw I was pregnant, they wouldn't sell us the dog (sometimes, and rightfully so, they are afraid once baby comes, the dog will just be given away).  We brought Dudley home in December of 2003 and never looked back.  Dudley has always acted differently when I've been pregnant - even before I knew sometimes... but in hindsight, he acted VERY differently with my pregnancy with Meagan.  I think he knew 'something'... even before we did... and after we found out.  He knew something was "off"... the dog would NOT leave my side when I was home.  Everytime I turned around, I would practically fall over because a large 80 pound body was RIGHT there, pressed up against my legs.  The 4 weeks Meagan was in the NICU, he behaved the worst he ever has - breaking out of his room when people would be out of the house, chewing on things, being hyper..etc.  I was a bit worried because Meagan still had to come home and I didn't know how I'd deal with his new found "attitude" and our new baby with so many needs.  The funny thing is.... as soon as we came home, Dudley was immediately calm.  He came over, sniffed Meagan, licked her on the cheek, and walked away.  And ever since, he's been back to his "old self."  It's like he knew something wasn't right... he knew a member of his family was missing, and he was ok when he could tell she was finally home where she belonged.  I'm so thankful for this dog.  He just exudes love and at the same time is incredibly protective of his family.  I cannot imagine our lives without Dudley!

I am ever so thankful for my husband, Brian.  He is the rock, in many ways, that holds this family together.  I may be the Irish/Russian-Aries "hot head" .... but he is the calm in the storm.  If he were like me, we would probably go crazy!  But he has been amazing in dealing with all of our stress with Meagan.  He worries - he outwardly worries.  A lot more than I do.... but this is good.  We balance each other in ways that are (normally) helpful.  He took off 4 weeks from work to be with me at the hospital everyday with Meagan.  He held down the fort at home whenever we have had an unplanned hospital visit or doctor visit. He didn't hesitate to ask for more time off when we got our call from Duke, even though I know it had to be really hard for him to approach his bosses again.  He always is there for me.. even in times I feel alone.  Brian is a great husband, father, and the perfect dad for Meagan.  I'm so thankful for his patience, his humor (Kaitlin gets it honestly), and his perserverence and hard work.  He has recognized the balance he needs to hold between working hard and being there for his family.  Not everyone does that. And so for that, I'm forever grateful.

Last, but certainly not least, I am thankful for our faith.  Our faith is who we are - to the core.  We may have other attributes, talents, or aspects of our personalities...but none of this would be worthwhile, or even developed in a worthy manner without our faith.  Brian and I were both raised in good, well rounded, Catholic families.  It is something we held on to through college, and something that brought us together as a couple.  Is it always easy? No, of course not.  There are times we have questioned our faith - but then there are also times it has been the ONLY thing that has brought us through these times with Meagan.  When our Perinatologist asked about not continuing our pregnancy, it was our faith we relied on to pull us through and say no to an obviously selfish and wrong choice.  When Meagan was in surgery, it was our faith that kept us strong and got us through her first few days.  When we had immense stress on our family and trying emotional times the month Meagan was in the NICU, it was our faith that pulled us out of the darkness, or sat in the darkness with us, if that's what we needed. There are some Sundays we are just so exhausted we don't "feel" like going to Mass... but we still get the house up and make the trek to church... even if in jeans and shirts I'm pulling out of laundry baskets .... because we just KNOW being consistent in our faith is SO important for this journey we are on.   And I know as we go along this journey, it will be our Catholic faith that will keep us truckin' along.   God will be there to guide our decisions and give us our strength; Our Blessed Mother will be there when times are tough and even I need a break and comfort; St. Gianna and St. Theresa will be there in very special ways to lift Meagan up when she is struggling and push her into the next stage in her life.  Being a tight, loving family has something to do with how we have come through our struggles with Meagan and how we will in the future -- but being a faith filled family, who practices our Catholicism without apology has everything to do with us doing so successfully. 

Happy First Thanksgiving Meagan Theresa Gianna! You are truly a blessing in our lives and together, this family can conquer anything!






Brian (daddy!)

Dudley (yes, he did sneak onto my laundry pile for his nap)

Two Month Check Up

Meagan had her two month check up today.  Everything seemed to check out well as far as the normal stuff.  Her weight was 9lbs 1ounce - a little skewed because her head circumference has also gone up 2cm in the last week due to her shunt flow change, but, nonetheless, a lot better than her 7lbs a month ago! I can tell she's "chunking out" in her clothes too.
She is a tall girl - just like her oldest sister, and her 4th sister.  She is 22 1/2 inches tall - in the 60% for her age.  Must have another one that takes after her daddy!  Her head, of course, is off the charts.  At least we go beyond the 100th% in something! LOL .  It looks good though - how it should look with her new shunt setting, and so far, her soft spot and sutures still feel great too.  I'm glad Dr. Reisner turned down her flow.. the Pediatrician said she can really see a difference in the sutures and hopefully it'll stop them from fusing early. 

She checked her vision and other developmental milestones.  She said the good thing is she is pretty sure Meagan can see - she does look to light in a dark room and she will look around the exam room... but, she can also see that when Meagan tries to focus, her eyes wander and/or cross still.  She said this really 'shouldn't' be happening anymore.. but because Meagan is a bit delayed, to give it some time.  If in a month we still see eyes crossing/wandering when she's trying to focus on faces or objects, we'll call the vision doctor back and go from there.  That's fine with me - I was just happy to hear that Meagan is probably seeing things :)

As for other developmental things, she said to be patient and we'll see how it unfolds.  She put her on par with about a 3 week old baby  ... so to look out for things that would come next like more focusing, more interest in her own hands, smiling when provoked or awake, etc.  She said we'll re-evaluate all these milestones at her 4 month check up and in the meantime, to mark when she does do some of these things, and continue to follow these developments with her OT and PT at home. 

We discussed Meagan's spasms/movements again.  I brought in the videos and the Pediatrician was able to see them. She agreed something was off and we needed to definitely watch them.  She went over Meagan's EEG report with me and said that the Neuros had been specifically concerned about Infantile Spasms... which to our relief was not the case.  Her EEG came up 'normal' during the activity the Neuro had originally thought looked like IS.  We continued to talk about Meagan's history, and one thing that came up as a little 'red flag' was the use of metaclopromide when Meagan was in the NICU.  Essentially, it's "baby Reglan," and it's used for digestive issues.  Now Meagan needed help in digesting her food in the NICU .... after every feed, they would pull her residuals and it would be almost the entire feed.  Food was not going from her stomach into her intestines, so she did require some sort of motility drug to move the milk through her system.  HOWEVER, we were never told about the risks of the motility drug they chose to use.

After research and looking back through Meagan's medical papers, we now know she was put on the motility drug, that according to every medical site we've read and others we've talked to, should only be used as a LAST resort for digestive issues. And she was on it, in quite a good dose, for almost 4 weeks. The cautionary phrases about the drug are because it does have a risk of nervous system damage - which can cause unusual involuntary movements and/or spasms.  It's only skimming the surface to say that Brian and I are extremely angry over this.  If this drug was what they HAD to use for Meagan, where were the doctors, CNPs and nurses - ONE of them - making us aware of the risks of the medication? We were at Megan's bedside for 8 hours a day, almost everyday for 4 weeks.  There were plenty of opportunities for them to make us aware of what they were giving her, and the risks it carried.   Most doctors give heavy warnings with this drug - and we were told nothing.  Also, most of the time, parents have to sign a release for this drug to even be used on their child.. AFTER knowing all the risks it may come with. Yet were we ever told any of this? No.
As the mom, I am livid over the lack of communication from the NICU doctors to us regarding medicines administered to Meagan.  And this is the second time (that we know of) because we also were not told when Meagan was put on two heavy anti-seizure drugs for her being fussy. Yep, just fussy. The worst part is when she was on those drugs, we even called in to check on her and NO one told me she was crying/fussy.. and NO one mentioned they were going to put her on two extremely heavy drugs.  And they even wanted to send her home on those drugs until I said No.  So now the fact that we didn't even know the heavy risks of this motility agent.. with it having such possibility for adverse side effects.. really gets my goat.  I am by no means anti-medication or anti- doctor... matter of fact, I'm very much the opposite.  But, there HAS to be a balance of knowledge between the parents and the doctors.  Hands down, we should have been told of the risks associated with this motility agent.  It would have at least given Brian and I the opportunity to say "Ok, it's worth it because her digestion is really that bad..."   or ... "You know what, considering the risks, can we try another motility agent first with less adverse side effects?"  It would have at least given us a say, and we wouldn't be having these "would have, should have, could have" moments now.
Of course, it's not a guarantee that this drug is what caused Meagan's spasms - but - it is a decent possibility and we need to look into it.  Luckily, our Pediatrician is very good and is going to do some research - and we are also going to try and figure out why we were not kept informed by the doctors at Children's of such risks.  Meagan has enough to deal with from her Hydro - it would have been nice, and at the very least, respectful, of the staff to let us know of any serious risks to medication she was given ... especially without our knowledge.  We will keep watching her spasms... her doctor said to keep taking videos.  She said if they ever increase in intensity or frequency to please call the Neuro asap so we can keep investigating what may be going on with our sweet girl. I'm sure this is the first of many frustrations to come in situations where "x fixed this.. but now could have caused that" .... and we will take it all in stride.  But in the future, I hope doctors are more up front with me about Meagan's medications and what risks they pose.  It is my duty as her mother to help her in the best way possible, and this means mitigating any possibility of further damage by medications.. but I cannot do my job, if the doctors don't do theirs by keeping communication lines open.

Checking out some college basketball (it was the Duke game so I don't think she was very happy.. GO XAVIER!) ;)

Hmmm.. I look pretty darn tired here! Getting some snuggles from my oldest and Meagan.

Meagan rocking out her Fuzzibunz cloth diaper at her 2 month check up.

Her favorite (and only) place she will sleep for a little bit- on her tummy on my chest.

Saturday, November 19, 2011

Meagan's Scan Comparison

So below I have posted Meagan's scans.... the first one is her MRI from birth - head circumference was 48cm, and obviously, ALL you can see is fluid (the white in her head) There is a TINY ribbon of brain tissue on the side, but that's about it.

Below is Meagan's CT scan from this week.  Head circumference, 43cm. **The NSG told me to be careful about directly comparing the CT scan to the MRI because they will give different levels of details in the imaging but you can still see a big difference**

1. the fluid going down (the black in the middle of the brain, which was all the white in the above picture)
2. her brain tissue around the edge of the skull starting to fluff out (the grey matter about an inch thick or so)
3. her shunt (the long thick white line)

There are also some new things the NSG went over with me that he is watching carefully:

1.dark black around the outside of the brain - this is new fluid gathering around the outside of Meagan's brain can indicate overdrainage and that her bones are at risk of fusing early.  He re-programmed her shunt to go slower to put more pressure on these bones so we can hopefully avoid surgery to have to break them apart.  It seems to be working so far - her head has rounded out on top already and grown almost 2cm this week.  It may seem crazy to let her head circumference go back up, but, we have to walk a fine line of enough pressure so the bones don't fuse before brain is present,.... and not too much pressure where it continues to damage the brain.
2. a grey-ish "speckled" black fluid at the back of her brain.  When I asked if this was also fluid from her Hydro, he told me it is actually something 'new' for Meagan.  He believes it is a large CSF filled cyst in Meagan's Posterior Fossa... Meagan will probably need another surgery at some point to place a new catheter in this area so it also drains and doesn't continue to put pressure on her cerrebellum. The NSG also wants to watch it because it can be a sign that Meagan has other brain abnormalities that we have not seen yet due to the fluid. But that is something we won't know until her next scan in 3 months.

Here are the two side by side just for visual comparison:

Friday, November 18, 2011

Sleep Moving?

This is the best way to describe Meagan's sleep, or lack thereof.  Try to sleep while you are moving... and that's what her evenings and nights are like.  Sigh.  Last night, Meagan was up almost the entire night. I think both she and I passed out at around 5am.  The girl just can't get comfortable.  Her arms and legs will have spastic movements, and her torso will tense and become rigid... sometimes bending at the waist, and sometimes going straight out like a board.  She often has clenched fists and will not relax her hands or fingers, even if I pry them apart. When she eats, or when she lays down, she often holds her arms bent inward and her fists still clenched tight and elbows seemingly 'locked'....  I am really anxious to get to her Pediatrician appointment on Wednesday so we can talk about her movements.  With the EEG out of the way, and the relief of no seizure activity, yet continuation of her spasms, I'm wondering if this does have to do more with her Hypertonia than anything else. I can imagine if my muscles had long periods of being tight or tense, it wouldn't be very comfortable.
  I feel awful for her because there is not much I can do to help her be comfortable.  She will calm a little if I hold her, but even so, I can feel her tense up in my arms-- her body almost becomes like a board.. and her arms and legs will shoot out and shake.  I hope her Pediatrician can offer some answers, or a new path of investigation so we can get to the bottom of it and get this sweetie pie some restful sleep!

Here is a small example of what happens with Meagan's body.  In this video, she had been doing this for about 7 minutes downstairs.. I found my camera and came upstairs to try to catch some of it.  It starts around 23seconds.... everytime, it always starts with her legs stiffening outward, and then she proceeds to have arms involved, waist bending, head bending and several spastic movements with her arms and torso.  After shes' done, you can visually see her body just  relax, and her head goes back and generally, she will pass out for a little bit.

In this video, which was taken last weekend, it starts around 35 seconds and goes until the 2 minute mark.  Same kind of movements - lots of tension, spastic movements, and involving her arms, legs and head. 

Not a happy baby!

Neurosurgery Follow Up #1

Meagan had her follow up with the Neurosurgeon yesterday.  Overall it went well.  The NSG (Dr. Reisner) was very happy to see her - he is such a great doctor, and even better, a wonderful man to work with from the parent perspective.  He is very good at balancing information without overworrying the patient's family.  I was giggling to myself because the first thing he did when he came in was vent about another patient he was dealing with.  His first words to me were, "I'm so frustrated. May I tell you something?"  Of course, I said "Sure."  He went on to explain, without using too much detail or any names, that he had another patient he was working with who had multiple head injuries from a specific activity he did over and over again.  It was to the point now where Dr. Reisner would not sign off on it anymore because he felt this person was at the end of his 'luck' with brain health .... in other words, he felt if this person had one more traumatic head injury, he was going to seriously damage the brain or worse.  Dr. Reisner was frustrated because he said the patient and the parents were mad at HIM for not signing the papers! He said he did not understand this because then he sees patients like Meagan, who didn't have a choice in her brain damage, and who would give anything to have a healthy brain.  He said "Some people just dont' understand what they have."....  I could appreciate his frustration because I imagine he is looking at this otherwise healthy person and thinking "You have a HEALTHY brain.. quit killing it by doing a stupid activity you can CHOOSE to stop doing."  Sigh.

He continued with the exam - he measured Meagan's head.. it is still around 43 cm.  He then looked at her sutures.  Her ridges were extremely pronounced but looked good.  He wasn't worried about overdraining as of yet, but, because of how overlapped her sutures were, he became concerned that they would begin to fuse prematurely - which would not be good because it would restrict brain growth and he would probably have to go in surgically to break the bones apart again.  He decided the best "solution" was to play around with her shunt by re-programming it to a slower flow.  His hope was that he could add just enough fluid pressure to press on those bones and pull them apart a bit, thereby avoiding early fusion... but not add too much pressure where it starts to affect her behavior and brain health again. 

Once he re-programmed her shunt, he took a look at her CT scan she had at the hospital.  He was happy about the brain growth - he put the picture next to her scan from birth.  On her birth scan, you can see nothing but fluid - on her current scan, y ou could see about a centimeter of brain around half to three quarters of the interior of the skull.  Dr. Reisner was happy with this and said the brain was starting to 'fluff out' and hopefully it would continue to do so in a successful manner.

 One thing he found that he wasn't happy with was additional fluid in another part of her brain.  He explained that the other fluid we saw towards the back of Meagan's brain was probably a large cyst in the posterior fossa.  In some Hydro kids, this can indicate other brain abnormalities or syndromes, so he said it was something he wanted to keep an eye on.  First, because he may have to go in surgically and insert a second catheter directly into this new fluid area and link it to her original shunt so it also starts to drain.  Secondly, because of the location of the cyst possibly indicating other brain abnormalities, he wants to watch it and see how the brain in that area ends up fluffing out... so he can see if any of these other abnormalities do exist.  When I pressed him on what it could mean, he simply told me... "We can't see that brain yet ... we don't know what it will look like anyway, so no need to worry.  Just enjoy your baby."

He's right - Sure, this new "find" could certainly indicate more problems for Miss Meagan later this year, however, we just don't know.  We can't see beyond the fluid.. we can't see beyond the cyst. So we have to wait and see at her next scan what this cyst is doing, and how the fluid is now building near the base of her brain.  What we do know is that it's something we have to watch - so, back to the original "mantra" of a Hydro diagnosis...... watch, wait, and see.  It's just hard to swallow when you are hoping for only good news, and you get that "...but..." with a whole new reason to worry.

It has only been one day since her shunt was re-programmed, and her head circumference is already up 1 cm.  Her ridges are barely noticeable anymore.. and I can tell her fluid level is higher.  Hopefully she adjusts ok to this new pressure setting so that we can avoid those bones fusing already.  She has been a little more irritable tonight, but, not overly fussy and no behavior changes... so I think she's just trying to adjust to the new shunt flow.

Overall I'm happy to see her brain is starting to fluff out - but I'm also nervous that there are now two new issues which could land Meagan back in the OR in the next 4-6 months. I'm also still concerned about her muscle tone and the way her body is twitching all over.  The poor thing cannot be comfortable.

I was talking with Amy's husband (Claire's dad) who stopped by to see us another day at Children's about how I completely forget where Meagan "should" be until I look back at what my other kids were doing at this point. I still look at Meagan like she is so tiny -- this little 2 day old newborn who is so sweet and just lays there most of the time.  Then, I will look back at my other girls' photos - and realize that by 4 or 5 weeks old, they were laying on their bellies, holding their heads up - and by 6-8 weeks, they were looking around, smiling, cooing, laughing, and starting to really develop that personality.

Meagan is now 8 weeks old, and while she does have her alert times,she isn't focusing or tracking yet.  She will 'stare' in the direction of things, but isn't quite "looking" at specific items yet, and her eyes do still roll or travel quite a bit, sometimes in different directions, which is always a little strange to see!  She doesn't smile, coo or laugh yet.  And you can forget about head control at this point.  But I have to keep reminding myself - even though my other kids all developed differently, they also didn't have anything fighting against them.  Meagan has her Hydrocephalus fighting against her every second of every day - so I need to celebrate what she CAN do, and know that everything she is supposed to accomplish in her life, will fall into place in time.  So I am going to conclude this entry by celebrating Meagan's accomplishments so far and keep looking forward to all the new things she will show me she can do this coming year.  To date, Meagan is a rockstar because of  kicking out her feeding tube, nursing successfully, grasping my finger when placed in her hand, staring towards light when turned on in a dark room, crying to let me know she is dirty or hungry, and pausing when upset if I touch her like she knows I'm there.

 Love you Meggy - keep fighting!

Big sister Reilly giving Meagan a little "music therapy"


Big sister Maura giving Meagan her morning hello

What Meagan looks like after she passes out (quite literally!) from her muscle twitching episodes

The look on her face pretty much sums up what she thinks of "tummy time."  I can't say I blame her!

Thursday, November 17, 2011

The "Non-Answer" Answer

I was trying to catch one of Meagan's episodes on camera so I could show it to the Neurologist.  But being that they had just started to increase in frequency, it was hard for me to notice a pattern just yet.  I happened to be sitting with Meagan one evening when she started to have her spasms. Luckily, I had just been taking pictures of the girls, and happened to have my camera next to me.  It has a video feature, so I clicked the record button. 

Meagan pretty much repeated her pattern over the next day.  She was very uncomfortable when they would occur - getting fussy or crying after each episode.  Even if I held her arm or leg, the tension would still continue.  It was enough for me to worry and call the Neuro.  He asked if I had been able to get video, and I said yes.  He said to bring her into the Children's ER so the on call doctor could take a look.

I drove Meagan in to Children's...Brian stayed home to hold down the fort until our sitter could come over to cover bedtime.  We checked in and the on call doctor came in.  He saw the videos and felt that they probably weren't seizures.  Honestly, in my gut, I felt the same way - but - they were something new, they were NOTHING my other kids had ever done, and she is a Hydro baby.  I couldn't just dismiss it as easily.  Apparently, neither could the Neuro because he told the on call doctor he absolutely could not discharge us without being certain.  He told him to go ahead and admit Meagan and hook her up to a 24 hour video monitored EEG.  This way, he could watch her and her brain waves at the same time, and we could put to rest any question of seizure activity.  He also said it would be great for her to have a baseline EEG for any future problems so we had something to compare. 

Meagan got her IV put in (in case it was seizure activity and they had to medicate), and she also had a CT scan to check her shunt function.  This was just in case the shunt was malfunctioning because the doctor said if that was happening, it could be making her really uncomfortable, therefore causing spasms.  Luckily, her shunt and the tubing checked out fine and appeared to be working well.  We then walked to Meagan's room and got settled in.  The nurse said that the EEG tech would be by in the morning to get Meagan hooked up.

Morning came and went, and of course, we were on hospital time.... which meant that there was not even a tech in sight until well after lunchtime.  The tech finally arrived around 2pm to get Meagan set up.  It always amazes me that they know where to put what wire... there are so many and Meagan is so tiny, I personally would be confused.  Once she got all the wires placed, she wrapped Meagan's head in gauze and then taped on a long stocking cap which confined all the wires in one bundle.  The EEG pack was placed in a bag and that way everything was nice and compact so when I had to move her (feedings, diapers changes etc..) it would be fairly easy to do so.

The first night there was pretty much how she'd started to be at home - miserable! She seems to cluster the spasms in the evenings and at night, and so naturally, they wake her up and don't allow her to have a restful sleep, or to fall asleep easily.  Watching what her body did, I don't blame her for being fussy.  I wouldn't be able to sleep either!  Meagan FINALLY passed out around 4:30 in the morning.  Of course I did shortly after - I was absolutely exhausted. 

By 8am, the Neuro had come by to see us.  I honestly was shocked because normally Neuro time seems worse than hospital time... but I was glad to see him that early.  He explained that they probably wanted to keep Meagan another day.  It was both relieving and frustrating all at the same time.  Relieving because obviously they needed more data to make a conclusion - and I'd rather have a definitive answer than an 'inconclusive' result due to lack of data.  But frustrating because this meant a third day in the hospital - another day scrambling around to find sitters for the kids, rides to and from school for the older two, and more stress on Brian being late or leaving early from work. 

The second night we were there was pretty much a repeat of the first.  Her spasms acted up... and she could not sleep well.  Finally around 4am, she passed out again.... and so did I.  Brian stopped by on his way to work that morning.  He hung out for a little bit bent on the hope that the Neuro would once again make an early appearance... but the nurse soon told us that it probably wouldn't be the case.  They had a lot of EEG tape to go through, and at earliest, they would probably be by in the afternoon.  Brian went on to work, and Meagan and I waited.

Finally, well into the afternoon, the Neuro did come by.  He told me, thankfully, there was no seizure activity he could see.  He said there were several abnormalities on her EEG, but, nothing that pointed to seizures.  He said the abnormalities could easily be due to her Hydrocephalus.  He told us if they are still bothering her or interrupting her comfort, to definitely follow up with the Pediatrician and go from there.

Don't get me wrong - I feel extremely lucky that Meagan was not having seizure activity - I am so thankful we avoided that for now.  However, it also leaves me in a very strange place because, once again, we have a "non-answer answer."  Her spasms continue - they are still in her legs and arms and her torso still tenses and bends.  often times her shoulders get involved too.  The only thing I can think of is some sort of disturbance to her nervous system, or possibly muscle spasms because of her Hypertonia. In any case, we are back to square one in some ways - so we see her Pediatrician this week to discuss next steps in helping Meagan. 

I just want to know what's going on with her because I'd like to make her more comfortable and able to have a more restful sleep.  Unfortunately, I don't think this is an answer we are going to get anytime soon because my gut tells me it's going to have to be a 'process of elimination' to get to the bottom of it.  Many people have asked about startle reflex, or just newborn "jerks" being the culprit.  I can definitely say hands down it is neither of these.  My other 4 kids, all very different from one another, did both of these normal 'twitches' with the startle and jerky muscle movements.  But even as different as they all were, NONE of them do what Meagan's been doing.  There has to be something going on with her because they come across totally involuntary.  They always seem to hit her out of nowhere, it always involves the exact same movements in the exact same parts of her body.... and she always is upset after the entire episode.  It's just so repetitive each time... involving the exact same movement pattern right down to what limbs are involved and how she comes out of it.  So we'll see what happens.  I'll start with her Pediatrician and go from there.

I'm very glad we got the EEG done - it was the only way to at least eliminate one of the possible causes ... and being that she's a Neuro patient anyway, it will be good in the future to have this baseline for Meagan.  That way if anything changes, and they need to re-test her for seizures, they will see her old EEG results and have a comparison.

All hooked up and ready for her EEG

Another Hydro mom, Amy (Claire's mom) came by to see us and was sweet enough to bring Meagan this nature sounds lamb.

Getting a Daddy snuggle when he stopped by on his way to work

Squiggly lines. I have NO clue how they read this stuff..but here are 4 shots from different time periods of Meagan's EEG.

A VERY tired baby. Muscles that don't cooperate make her exhausted!

Friday, November 11, 2011

Gut feeling ... or over worrying?

 Meagan has always had strange tremors or spasms since she's been born.  Matter of fact, I even asked that she go ahead and be hooked up to an EEG while she was laying in the NICU.... but I was told by the nurses and the Neuro at the time that there was so much going on with Meagan's head, it was probably just her body working itself out. I was 'ok' with that explanation because the spasms really were few and far between so I started to second guess myself and agreed to not do an EEG.

So here I am, 7 weeks later, and wishing I had put a little more pressure on the doctors to go ahead and do an EEG.  Meagan's spasms that used to be few and far between, or at least, unnoticable to me for the most part have grown into daily events.  They normally happen several times a day - typically after she's awakened or eaten.. but not always.  Sometimes they are just at random times. 

They always start in the same way -- Meagan either looks up or her eyes get really big like she's scared.... her legs tense and either bend at her waist, or tense straight out.  Then what happens is she has a severe spasm where her arms go outward, her legs bend up towards her waist as her body tries to bend in half.  Sometimes her head turns to the side.  She has several of these in a row normally.. anywhere from continuously to a few minutes apart.  Sometimes she's quiet in between, and sometimes her arms/hands seem to have tremors in between.  And they always end the same way... she is upset/crying and fussy.. and  she passes out asleep.  I don't blame her. If my body did that, I'd want to pass out asleep too.

I kept going back and forth over the last week whether to really worry about them or not -- was she really having spasms or jerks due to Neurological reasons? Or was I "imagining" it.. as everything with her sparks worry for me.  I finally talked to a few other families - and with that and my gut feeling I decided to go ahead and call the Neuro to schedule an EEG.  I figured, if they are Neuro-related, I can find out, and get her on meds.  If they aren't, then I will know to pursue the muscle-related route with her Pediatrician, and perhaps we can figure out something that will help her be more comfortable when she is having an episode.  These clusters, whether Neuro or muscular related, are most of the reason she doesn't get much restful sleep.  She will have these episodes often enough that she doesn't sleep well - which means Mama doens't sleep well. If she just woke up to eat and went back to sleep, it would be ok. But I hate that she seems uncomfortable and even scared during them... so I had to pursue it and have it looked at.

I saw the Neuro on Tuesday.  He agreed that it didn't sound "normal" and was worth checking out.  However, they didn't have an EEG opening they could squeeze us in to after all.  They were able to fit us on the following Friday, so we took it. 

Friday came fairly quickly  -- we went in for her EEG.  I tried to press the Tech for at least a little information but she said she couldn't tell us anything.  She said the doctor would call us in 5-7 business days. Being that it was a Friday, I'm not holding my breath for any answers before even next weekend.

All in all, I'm feeling "ok" about it all.  I really feel deep down that it's nothing - that what she's doing is not seizure related.  But I needed to get it checked out to have peace of mind.  Seems I'll just have to wait 5-7 days for that. Sigh.

All hooked up and ready to go

Sunday, November 6, 2011

A Special Bond

Meagan had several great Hydro friends before she was even born.  The access we had to the Hydrocephalus message boards to help us deal with and sift through Meagan's diagnosis before she was born was invaluable.  We found several wonderful families and continue to talk with them to this day.  Some of them live right here in our local area.  One of these families talked with us at length when I would post questions, and offered several times to talk to us over the phone.  They also gave us advice on doctors and Neuros, as they saw many of the same practices for their daughter. 

Last week, I was checking our Hydro board and saw that this family was back in Children's hospital with their little girl, Claire.  Claire's parents will always hold a special place in my heart because they were there for Brian when Meagan was born.  They made the effort to come and see Brian and Meagan at Children's before Meagan's surgery - when I was still stuck at Kennestone hospital recovering from my c-section. They had their own battles to get through with Claire, yet they still made time to come to the NICU and visit Meagan and Brian.    Brad and Amy, Claire's parents, even came and held Meagan and gave her some love since I could not be there.  They will always be special to me because they were able to give her a little gift of human touch when I could not.

So when I heard Claire was back in the hospital, I knew we had to go see little Claire and tell her to feel better soon!!  I traveled down to Children's and went up to Claire's room.  Unfortunately, I missed seeing Amy because she had to be at work  - but Brad was there with Claire.  I had Meagan with me, and we went into Claire's room.  She was laying in her crib, not feeling too great.  I visited a little while with Brad, and Meagan slept in her carseat.  I had to leave sooner than I would have liked because I had to get Kaitlin from school.  Meagan started to wake up a bit before we left.  I took her out of her seat, and we got a great photo of Claire and Meagan together.  Meagan got to snuggle Claire a little bit and tell her to feel better, and Claire got to give Meagan all kinds of advice since she is new to all of this. 

I would ask everyone to say a little prayer for Miss Claire - that the recent complications she is experiencing from her Hydrocephalus leave her alone, so she can start to feel better soon and is able to go home.  She is such a sweetie pie and so beautiful! And she definitely deserves a break.  Get better soon Claire, and thanks for being Meagan's friend before you even knew her.

Infusion #1

We left for Duke on Sunday, October 30th -- we made it to Brian's sister and brother in law's house near Ft. Bragg later that evening. We packed the 4 older girls' Halloween costumes so they could go trick-or-treating with their Aunt, Uncle, and cousin on Monday. We ate dinner with everyone, got the girls settled, and then Brian and I got up around 4am Monday morning and continued on to Duke University with Meagan!

We arrived a bit before 8am.  We went to the Children's Hospital, and got Meagan checked in.  They called us back fairly quickly and got her initial stats done (height, weight, etc..).  We went for her pre-infusion bloodwork (since it's a study).  We were very lucky to get a great nurse who got Meagan's blood samples easily on the first stick.  This is amazing because Meagan is very tiny -- her build is extremely petite, including her vascular system and getting a good stick was always a huge challenge in the NICU. We were very happy the nurse got it on the first try - less trauma for Meagan.  Before we knew it, the morning was over, and so was all of Meagan's check in work. 

We have been extremely lucky to find other Hydrocephalus families online and since have been involved in an online message board for support.  One of the women on the board is Michelle - an amazing mom to Owen, an 5 year old boy who also has Hydrocephalus.  Michelle did an amazing thing with her experience - she got together with doctors, and wrote a website that was a little more parent friendly than all the 'scary' sites out there about Hydrocephalus.  It is an excellent resource, written with medical information, but from a mom's perspective. It is also her blog about her incredible son, Owen, and has been a huge help to Brian and myself through this whole process. 

I talked with her over email before our Duke trip (her site was the source where I first learned of the Duke Hydro study).. .and she informed me they would be at Duke that same Monday for an appointment for Owen.  We made plans to meet up.  So following Meagan's check in appointment, we walked over to the main hospital and waited in the main lobby. 

Michelle and Owen (and Michelle's mom and Jigsaw, Owen's service dog) arrived shortly thereafter.  It was so amazing to meet the woman in person who had helped us through so much of this tough pregnancy!  We chatted for a little bit, and of course, Meagan gave her some snuggles :)  We got some pictures together and then Owen had to be on his way to his appointment.  The internet is so wonderful for these kind of things -- it allowed us to meet this wonderful family!!

After we visited with Michelle and Owen, we decided to take a little tour of the Duke campus.  We walked around and saw the Chapel, and walked through some of the quads.  We also walked up to the athletic center -- of course, we love what Duke Medical is doing for Meagan and other Hydrocephalus kids -- and also for other kids with several different diseases and conditions.. however... Xavier Musketeers still rule in basketball ;) So of course, we had to walk up to the basketball arena where Brian gave a little Xavier "love" to Duke.. LOL

Brian giving a little "Xavier love" to the Duke basketball arena... GO X!

We made our way back to the car and went back to the hotel to eat dinner and get some rest.

The next morning, we woke up and got ready to head over to Duke for Meagan's infusion.  We took the hotel shuttle to the hospital since we knew we may be there all day.  We arrived, checked Meagan in, and got her stats again.  When the nurse measured Meagan's head, she came up with 49cm.  I gasped because that was a cm larger than when she was born! I asked her to re-measure -- and sure enough, she came up with the same number! I started to panic a bit because her head had been 43cm upon discharge from the NICU 2 weeks earlier and I had failed to measure it at home with any consistency.  I had a minor "freak out" and messaged my Hydro friends on the message board -- and much to all of our relief, it turned out to be an error.  When the CNP came into the room, I had her re-check Meagan's head and give her an exam.. and it all checked out ok.  Her head circumference was actually 43.8cm.. a lot better than 49cm! I was relieved. 

Once we were all checked in and got into our day hospital room, we started the long wait.  They won't start thawing the stem cells until we are actually in the room waiting because if they start to thaw them anticipating our arrival, and we get held up for some reason, the cells will go to waste.  So we had about 2 hours of 'dead time' while we waited for the cells to thaw and be transported from Duke's lab.  Once the cells arrived, the CNPs came in and started to prep Meagan for her infusion.  She got a little bit of Tylenol to take the edge off any discomfort.  Then Dr. Kurtzburg came in and did Meagan's IV.  She then gave her some Benedryl and a steroid drug (also for anti-allergy as well) through the IV.  These drugs are given as a preventative measure.  When the cells are frozen, they have a preservative added to keep the cells alive.  When the cells get thawed, most of the preservative is washed away, but some tiny amounts remain.... so the Benedryl and steroid are given just in case the child has a reaction to the small remnants of the preservative.  In over 400 patients, they said only 2 or 3 have ever had an allergic reaction.  Considering Hydrocephalus in and of itself is also a rare percentage, I wasn't too concerned because the possible benefits of her receiving her stem cells outweighed any minute chance of an allergic reaction. 

As soon as everything was set and the medications were given, Dr. Kurtzberg came back into the room along with two CNPs and a few other staff members.  Also, a musician named Terry came to offer some music therapy/calming lullabies for Meagan while she had her infusion.  As a musician myself, I thought this was wonderful! And as a mom, I thought it was a well thought out procedure - making it as little like a "hospital procedure" as possible for these kids.  Once the infusion started, it only took about 10 minutes, maybe 15 total.  Dr. Kurtzberg does the procedure herself, which was wonderful to watch.  Then Meagan was hooked up to about 2 hours of IV fluids to make sure she was well hydrated.  She continued to rest and we waited patiently for the process to conclude.

Go cells go!

Dr. Kurtzberg, Brian, me, and Terry the music therapist

Meagan resting comfortably after her infusion.

Right before she was going to be discharged, Dr. Kurtzberg came back to talk with us.  She explained that the thought is the cells hopefully travel to the brain to possibly help some of the brain damage that was caused by the severe pressure due to the Hydrocephalus. Nothing is "proven" as of yet, but, this is at least the thought behind these treatments for Hydrocephalus kids.  Proof or not, since it can't cause Meagan any harm, we decided to do this for her - because if the study is finally proven years down the road, we would feel awful we didn't have her involved in such an opportunity.  Meagan has nothing to lose.

 She also told us we may experience a "cream-corn" type smell from Meagan's breath over the first 24 hours because of the remnants of the preservative leaving her system, but otherwise, should have no other side effects or problems.  The doctor was certainly right about the smell! The poor baby smelled like corn for the next day or so.  The smell of corn overtook our hotel room, our car, and about anywhere else we went.  Our 5 year old, who is very sensory "sensitive" commented on it almost immediately... "Mama.. Meagan's breath is stinky!!"  Haha.. But, it went away and all was well again.

We headed home Wednesday morning after calling Dr. Kurtzberg's CNP saying Meagan had done great the night before... we drove a few hours to Brian's sister's home, picked up our girls, enjoyed a nice family lunch, and then continued on to Atlanta.

 It's really amazing work she and others are doing -- it is still in experimental mode, but, I don't doubt that in 5 or 10 years, we'll hear of wonderful things these stem cell therapies are doing for kids with brain damage.  We have seen so many promising results from cancer patients, and patients who suffer from other diseases and conditions, hopefully similar results for Hydrocephalus children will follow. Even if it's not in our lifetime, or Meagan's, we feel wonderful knowing she is involved in a specific study that is first and foremost, completely ethical and favorable to life, and secondly, doing amazing things to help those with Hydrocephalus.  It is a bit hard to "see" any specific changes the cells may be making in Meagan because of her young age, but, we have heard many many positive stories from other Hydro families.  She will go back around 6 months old and then again before a year old for 2 more infusions.  At those older ages, sometimes it is easier to "see" a sudden change in the child after their infusion, such as doing something they weren't beforehand, or overcoming a developmental hurdle they had been struggling with..etc...

Brian, me, and Meagan with Dr. Kurtzberg after Meagan's infusion.

 Lastly, I must give credit to my OB, Dr. C, for Meagan even being able to receive these stem cells.  It was up to her to capture and collect, successfully, Meagan's cord blood which contained these cells.  It is very common for some of the cord blood to be given for blood testing, blood typing, and other early tests newborns go through.  My OB explained to me before delivery, that if it was ok with me, she was planning on capturing all she could just for the Duke study.  She told me it may mean Meagan would have to be stuck again in the NICU for the other blood tests, but, that she felt it was more important to give as much cord blood as possible to the Duke study considering Meagan's condition and our reasoning for capturing her cord blood.  I 100% agreed with her - and she certainly stood by her word.  Because of her diligent work at delivery, over 520 million cells were able to be processed for Meagan! This means she has enough for 2, or even 3 more infusions depending on her weight gain! This is incredible because it means Meagan can have 3 or 4 total infusions - which is absolutely wonderful!  So, I thank Dr. C for all her hard work and for her ability to gather so much cord blood at Meagan's birth.  It really is because of her efforts we could even entertain the idea of traveling to Duke and being part of this wonderful study.

Dr. C holding Meagan almost 6 weeks after she helped deliver her into this world.