9.28.2012

Back to the OR

God sent an angel down from heaven to watch over our boys and his name is Dr. Mittler. 

Two days after A&R turned one, we wound up in the PICU with Ryan. It all started Wednesday morning when Ryan threw up before his morning bottle. He had a runny nose so I assumed it was just a virus.  He pretty much slept the entire day, and anything he ingested wound up on our floor.  By 4pm we took him to the pediatrician, who also thought it was viral, but she instructed us to go to the ER if his vomiting increased in frequency.  I brought him home, gave him some pedialyte, and he went back to sleep.  Three hours later he vomited again.  This cycle continued once more, until finally at 11pm, with some urging from Seamus, we took Ryan to the ER.

A couple of CT scans and X-rays later we were told that Ryan's shunt stopped working.  Apparently a growth spurt caused the tubing to shift, and the shunt device was no longer able to do it's job.  You know what that means...surgery.  I think this is #10 in our books.  At this point it was 3am and they were able to get him on the OR schedule for 10am. 

Dr. Mittler showed up around 9 to talk to us about what is going on.  He is Aiden & Ryan's neurosurgeon, and from the moment we heard the word Hydrocephalus, he was in the picture.  He is the sort of guy that walks into a room and instantly makes you feel at ease, even when your child is minutes away from having his head cut open and his brain being operated on.  I hope he knows what a huge weight he lifts off our shoulders every time we are faced with another surgery.  He truly was meant to do what he does, and I know for a fact that there are other parents out there who are as grateful to him as we are. 

By the time Dr. Mittler showed up, Ryan was acting much better.  He hadn't vomited in almost 12 hours, but that could've been because he was NPO in anticipation of surgery.  NPO means he was hooked up to an IV for nutrition, and wasn't allowed to take anything by mouth.  In addition to feeling better, Ryan was showing some other signs that his shunt may have started working again.  So in lieu of going straight to the operating table, Dr. Mittler suggested an MRI to take a look at his shunt once more.  This gave us a glimmer of hope that we would get away with no surgery, but the waiting resumed.  After another hour or so, Dr. Mittler told us that it appears that the shunt may have started working a little better, but that he still suggests surgery in order to make sure that it works perfectly so that we don't wind up back in the ER in another 24 hours.  When that man speaks, you listen.  So there we were again, warming up to the idea of yet another brain surgery. 

Ryan was wheeled in to the OR at around 11:30am.  It was a little more difficult this time.  He's older and more aware of what's going on around him.  The whole time we were waiting on our game plan, I kept saying how big he looks in the hospital bed.  But once I was told I had to leave his side, he became so tiny to me.  We told him we loved him and said a quick prayer, and that was it.  They took him.  I immediately thought of how unfair it was for him to have to be so brave at such a young age.

We went to the surgical waiting area and wound up falling asleep.  We were so exhausted, not having slept in over 24 hours.  An hour later, Dr. Mittler found us and after waking us he said that the surgery went well.  He swapped out the shunt tubing, tested the device, and sewed our little boy back up.  We would be able to see him in recovery, once he was settled.  About 30 minutes later, the nurse got us and took us to Ryan.  He was cranky and his voice was raspy from the breathing tube they inserted.  I held him and gave him some sugar water, which he happily sucked down.  He fell asleep and we were once again at peace.  Back to that place where we know that our child is comfortable and safe.  Back to normal.

Though we live with a condition that threatens our children each day, we have pretty normal lives.  We go to work, come home, spend time with our kids, and do it all over again every day.  It's when a sickness rears its ugly head that we are reminded of our situation.  When our kid starts vomiting, it could very well be just a virus.  But it's heavy load to bear knowing that it's your responsibility to make a judgment call every time.  To decide if it warrants a visit to the ER or not.  You don't want to be that crazy parent that takes their kid to the hospital for no reason.  But you also don't want to be that parent who didn't.

Last night Seamus took over at the hospital and sent me home to get some rest.  When he walked me out, we both expressed that we better get used to this, because this is our new normal.  It's a little scary, and downright tiring at times, but this is our life.  And we have each other to get through it. 


Ryan is still in the PICU being observed post-op.  He started eating again and is pretty much back to his normal self.  The doctors expressed that they will decide later on whether or not he can go home.  At this point there's no reason to keep him there, so I'm not really sure why they're stalling.  Hopefully we can welcome our son home today.  Thank you to everyone who sent well wishes and prayed for our son's successful surgery.  It is by the power of prayer and faith that we've been blessed with such a good outcome yet again.  We are reminded of this daily. 

9.25.2012

ONE



We made it.  We've reached the place that we so badly wanted to be.  A whole year has passed since A&R were born.  I remember thinking how far away this day was, back when we were fighting yet another NICU battle.  Yet here we are, as if we were here all along.  We are so, so lucky and extremely grateful that we can sit here today and celebrate the year that has passed.

My sweet, sweet boys.  You graced this earth over three months early.  You weren't supposed to come until January.  But things happened.  Things that were beyond our control.  And there you were.  So small and fragile, but with so much life in you.  Had you been born when you were supposed to, we would've cried a million less tears, and prayed a thousand less prayers.  But you wouldn't be youAnd we wouldn't be who we are today.  While I wish I could take all your struggles and wash them away, I am so proud of where you came from and I wouldn't change a thing about you.  A year ago today, you were given a 50% chance.  Yet here you are.  Growing, learning and fighting on.  I've said it before, but you are truly my heroes.  You have filled my life with the most special love there can be.  And I am forever changed. 

Aiden, my firecracker.  You have a plan.  I can tell by looking into your eyes.  You are so energetic and full of life.  Constantly on the go, looking for something to do.  You rarely sit still for a minute.  But when you do, it is apparent that you are learning and absorbing everything around you.  And one day, just like magic, you show us exactly what you've learned.  Those inquisitive looks you give us.  Those moments when we look at you and think, "Wow, he gets it".  Those are the moments that truly make me proud.  You have such an intelligent look about you.  You are destined to do great things.  And to get in trouble.  After all, you are your father's son.  I kid, I kid.  Maybe.

Ryan, oh Ryan.  You are my cuddle bear.  You're so laid back and happy.  Most things make you smile and everything makes you laugh.  You're social and you love to talk, and your voice brings me joy each and every day.  How I wish I knew what you were saying.  I walk into your room every morning, looking forward to seeing you greet me with a smile.  Everyone should take a lesson from you and smile more.  The world would be a much better place.  You love music and you enjoy being startled.  But only if mommy or daddy are the ones startling you.  Not a vaccum cleaner or a dog barking.  And definitely not while you are sleeping.  I'm so excited to watch you grow.  You will do great things.

At one year we have four teeth, two for each boy.  We've endured months of painful teething and I hope the next few are a bit easier on all of us, though it's doubtful.  At one year we have one sitter, soon-to-be crawler.  Aiden, you so desperately want to go, go, go.  Any day now I'm going to turn around and you'll be following me.  I can feel it.  At one year we have a blabber mouth, almost-sitter.  Ryan, you never shut up and that's ok.  It reminds me of how badly we wanted to hear you cry those first few days of life.  You aren't quite sitting on your own yet, but you're getting stronger each day and with some more practice and patience, I'm sure you'll be there in no time.  Keep on keepin' on, little dude.  At one year you love your daddy's guitar, your doggie Penny, bananas, applesauce, chewing on anything and everything, and most of all you love each other.  You sleep through the night and take two naps a day.  You have a favorite show called Mr. Tiger's Neighborhood.  You're learning new things everyday and amazing us with how far you've come in a short year.  We are so proud. 

My dearest Aiden & Ryan, one day you'll be old enough to read this.  And to read everything else I've written here.  You may stumble upon some things that upset you, but you will also read about strength, hope and courage.  The first months of your lives were a great struggle.  For us yes, but especially for you.  You weren't given the same clean canvas that most people get.  No.  Your lives began in chaos, fear and uncertainty.  Though scary, everything you went through made you who you are.  And we wouldn't change a thing about you.  We love you more than our words can express.  And we have been given the very important job of ensuring that you succeed and are happy in life.  We might need to work a little harder in order to get you there.  But a little work never hurt anyone.  Thank you for fighting.  You've made us the happiest parents on Earth.

Happy birthday, little ones! 

 

9.24.2012

We like to party

Let me start by saying that we are so fortunate so have so many people in our lives who truly care about A&R.  The outpouring of love that we saw before, during and after their birthday party was enough to take our breath away.  A special thanks goes out to Adam, for taking it upon himself to photograph this special day for us.  It was one thing, a huge thing, that we didn't have to worry about while running around all day.  Thank you for taking the time to capture these special moments for us.  Warning:  This post is pic heavy.

Our theme was simply orange/teal.  No characters because the boys don't really like them yet.  Auntie Ag was especially helpful with the decor, taking it upon herself to make the birthday banner and staying up with me at all hours of the night making cupcakes and the boys' smash cakes.  Couldn't have done it without you, sis.  And thanks Uncle Anthony for putting the finishing touches on the banner as well.  

 

 

We had numerous people pitch in to make food for our buffet.  Thanks Auntie Ag, Aunt Katie, Aunt Kristy, Grandma, and Nana for helping us out.  You lifted a huge weight off our shoulders.  Side note:  I didn't realize that caring for two twinfants while trying to prepare for a party would be so difficult.  Thankfully the kids took a long morning nap, so we had some time to set everything up.  Next year we're going to outsource childcare.  Any volunteers? :) 


Apparently the boys love balloons and had a wonderful time playing with them.  Thanks Aunt Kelly and Nana for entertaining the boys while we finished setting up. 




We had the opportunity to take some great family photos.



And of course we had a cake smash.  Aiden, as expected, enjoyed every second of getting in there and demolishing his cake.  Ryan, not so much.  Then we sang Happy Birthday, once for each boy, and got a little teary when we tried to say a few words to thank everyone for their support over the last year.  Ok, I lie.  We totally ugly cried in front of all our family & friends.  It wasn't the eloquent speech I imagined.  But I think everyone got the point. 


 

 We had six candles on the cake.  One for each boy, two for good luck and two for their January 6th "un-birthday".
 It was such a wonderful day.  We had great weather, thank God, because I think I counted 50 guests at one point.  No way we would've fit all those people in our house.  The boys had a good time and we hope everyone else did too.  It couldn't have gone more perfectly.  Thank you to everyone who joined us on this special day.  Your generous gifts are being enjoyed in our house daily.  Not only do they entertain our wacky children, but they give Mom & Dad a few minutes of sanity each day.  



9.19.2012

autumn.

Though it's not officially fall, the promise of a new season is definitely in the air.  Time to put away the shorts and sandals, and welcome back those beloved sweaters and boots.  The air is so crisp, and the mornings so refreshing.  I love living in a city where I get to experience every season, but I often feel robbed of the fall & spring.  They never seem long enough.  Before you know it the sweltering heat of the summer or the bitter cold of the winter hit you square in the face.  Even still, I look forward to every season.  

Autumn is different now, though.  This time last year (tomorrow, to be exact), I was admitted to the hospital for pre-term labor.  I was taken to triage and put on three monitors.  One for me and one for each baby.  Turns out, I was contracting every 60 seconds and I really didn't feel it.  I guess you could say shit was getting serious.  I was still really naive about it all though.  Even when they put me on magnesium sulfate to stop the contractions (which makes you feel like you're on fire, by the way).  And even when they shot me up with steroids to help develop A&R's lungs.  I had no frieking idea what we were getting into.  

I spent the previous week on bed rest at home, with strict instructions to get up only to shower once a day and to use the bathroom.  The day the Dr. ordered bed rest, I was so terribly sad.  I was scared for my babies, of course.  But I was also upset that I would miss out on the fall.  Because apparently, all of a sudden, it was my favorite season.  I was told to expect to be in bed until I delivered the boys.  Which I was convinced would be around Christmas.  So I would sit in bed, and I would often cry.  How stupid of me.  

I think back to that time frequently and wish I could smack some sense into myself.  I know I don't have any magical powers or anything, but sometimes I feel like I wished for the kids to be born so early just so I could get out of bed.  Deep down I know that you can't wish anything to fruition, but I often search for someone to blame for all of this and it's easier to just blame yourself.

Exactly one week from today A&R will turn ONE.  A whole year old.  I keep waiting for myself to break down as I relive the memories from last year.  And it hasn't happened yet.  I still have 7 whole days for a melt down, but maybe it will never come.  I've been trying really hard to just enjoy my babies and be outside with them relishing in this season that forever sealed their destiny.  And maybe this approach will work.  After all we are here.  We finally made it.

9.11.2012

development

This morning we had an appointment at the Developmental Clinic with Aiden & Ryan.  When they were discharged from the NICU, they were considered high risk newborns and they were watched by the High Risk Clinic run by Cohen's Children's Hospital.  When they turned 6 months old they graduated to the Developmental division.  In short, the doctors at this clinic follow their development and whether or not they are hitting they milestones based on their adjusted age.  Since they were born 3.5 months early, their adjusted age is 8 months, even though they are actually 11.5 months old.  At the end of each appointment, the doctors thoroughly explain their findings and make recommendations as to what additional services they think the boys need.  These appointments always make me so nervous. 

Here are today's stats & findings:

Aiden weighs 16 lbs. and is 27 3/4" long.  This puts him at the 25-50% for weight and 70% for height, based on his adjusted age.  He scored at an 8.5 month level for motor skills and at 5.5 months for speech.  This means that he is right on track for motor, but his speech is delayed mainly because of his hearing, and also probably a little because of his cleft.  Since he just got his hearing aids last week, it will take him some time to catch up.  And then hopefully, once he gets his cleft repaired his speech will improve that much more.  Their recommendation was to get Aiden some Hearing Therapy in addition to the Speech that he already receives.  So, back to Early Intervention for another evaluation and hopefully he will get approved for services in the next month or so.  

Ryan weighs 16 lbs. 2 oz. and 27 1/2" long.  He falls in the same percentiles as Aiden for his adjusted age.  Ryan scored at a 7.5 month level for motor skills for his left hand only and at 7 months for speech.  The reason they noted his left hand only is that Ryan has a hard time using the right side of his body.  His arm, hand and leg are all tight on that side, and so is his neck.  We suspect this has to do with the fact that his Hydrocephalus affected the left side of his brain tremendously.  We constantly work on getting him to be aware of his right hand.  We massage it and place toys in it.  He's gotten much better over the last few months, but he still has a long way to go.  The recommendation for him was to increase his Physical Therapy from twice a week to three times.  He was also approved for Occupational Therapy once a week, though we are going to push for more.  Hopefully, once they work out his kinks on the right side of his body, he will be able to learn to roll over, sit up, crawl, and eventually walk.  

This is a lot of information to process, but all in all it was a successful appointment.  The boys have made a lot of progress since our last appointment in June when Aiden scored at 6 months for motor & 4 months for speech and Ryan scored at 4 months for motor and 6 months for speech.  And progress is all that we ask for.  As we near their first birthday, it's getting a little tougher to dodge questions about their development.  I mean, most one year olds are walking, and my guys haven't even crawled yet.  But I guess my simple answer to this is that Aiden & Ryan aren't most one year olds.  They're special.  And they will grow up knowing that.  

Edited to add:  We also woke up with our first cold this morning.  Aiden has the world's snottiest nose going on.  Poor guy was pretty cranky too.  It makes me sad because we've been so good at keeping them healthy.  We just have to watch him and make sure he doesn't get worse.  With his history of requiring oxygen, getting sick can sometimes turn into a hospital visit and we definitely don't want that.  Please think of him and send some get well vibes our way!

9.10.2012

In honor of National Hydrocephalus Awareness Month, I was asked to write a post for the Preemie Resource Blog.  You can read it here.

The Preemie Resource blog was started by a wonderful group of women who are near and dear to me.  They are fellow preemie moms and their stories of love and loss are posted on the blog, along with other information such as FAQ's, common preemie conditions, life in the NICU, etc.  Not only is it a great resource for new parents of preemies, but it offers a wealth of advice on what you can do for a loved one whose life has been affected by premature birth.  Please check it out.


9.07.2012

oh the places you'll go

Before I begin this post, please know that I love both my children equally.  And there will be posts exclusively highlighting Ryan in the future.  I know I may sound crazy, but I felt this disclaimer is necessary.  I guess I have a lot of twin mommy guilt.  Ok, moving on.

This week has been tremendous for Aiden in terms of milestones and development.  It all started on Sunday during Seamus' birthday BBQ.  We had the boys on a blanket on the floor, playing with their cousin Liam.  Aiden had been working on sitting up independently for quite some time.  We put his boppy pillow behind him, and he sat up for like 10 minutes straight.  He swayed a little back and forth, but each time he would catch himself with his hands and get back to a sitting position.  Since Sunday we've been practicing without the boppy.  It has resulted in some face plants (doh!) but he is getting much better.  So proud of my big boy.

On Wednesday, Aiden finally got his hearing aids.  He is still adjusting and he isn't his usual distracted self.  He seems like he is really absorbing all the new sounds he hears.  It's almost as if he immediately acquired this intelligence that wasn't quite there before.

Aiden rockin' his new hearing aids
Then, yesterday, while we were playing in the morning after breakfast, Aiden rolled from back to belly.  He's been rolling from belly to back since Mother's Day but had never rolled the other way.  Now the kid won't stop rolling all over the place, and I predict this will be his main form of travel until he learns how to crawl.  

A while later, after I got home from work, Aiden had his first real interaction with Penny.  I don't know if he was more aware of her since he could hear her better.  But the kid legit wanted to play with his dog.  He kept trying to get her attention and then when he had it, he couldn't stop laughing.  Just a boy and his dog.  

video

Finally, last night after I put the boys to bed, I peeked at the monitor and saw Aiden, like an old man, sleeping on his belly.  This was by far the most bitter sweet thing that happened this week.  Once they start belly sleeping, I feel like they aren't itty bitty anymore.  


Aiden, you've grown so much in the last few days.  Slow down killer.  Mommy can't keep up.


9.05.2012

ears.

A few days after A&R were born, I remember sitting in the NICU family room talking to two other moms who had also just delivered preemies.  I was so naive.  Never even heard of Hydrocephalus, didn't think twice about CP, never imagined what lied ahead.  I clearly remember saying to these women, "I just hope that they aren't deaf or blind.  I just want them to hear and see me."

Fast forward to Aiden's discharge.  His neo casually passes me by and says, "Aiden failed his newborn hearing screen."  My world shattered for the millionth time.   We were told to follow up with the hearing clinic in 6 weeks.  Deep down I knew what this meant, given his history, but I convinced myself that it was a fluke.  Many newborns fail their first hearing screen. 

When we arrived at the hearing clinic, Aiden was alseep.  They attached electrodes to his head and inserted little headphones into his tiny ears.  After about an hour of testing, the audiologist went over the results and confirmed what I feared the most.  A follow up visit to the ear, nose & throat doctor (ENT) gave us some more information.  Aiden was diagnosed with mild to moderate, mixed hearing loss in both ears.  The kicker?  We haven't a clue what caused it.  Could be his extreme premaurity, could be the hydrocephalus, could be his cleft palate.  Or, it could be genetic.  Doubtful, but could be.  We were told to follow up with a geneticist, but we haven't done so yet.  It's not like it will change anything if we find out that it is, in fact, genetic.

Mixed hearing loss is a combination of conductive and sensorineural hearing loss.  Conductive means that the anatomy of his ears doesn't allow for proper hearing and sensorineural means that the nerves responsible for his hearing are damaged.  Mild to moderate means that he can still hear, but he will need hearing aids.

Fast forward to a few months ago:  We finally got his hearing aids approved by the state, and we went for a fitting.  So excited because his speech was already delayed and we were anxious to get him babbling like his brother.  Right before the fitting, I mentioned to the audiologist that I think his hearing improved, so she decided to test him again.

Much to our surprise, Aiden presented with improved hearing.  The little bugger scored at almost normal hearing levels for most sounds.  We were told to go back in a month for another hearing test just to keep track of things.  Unfortunately, the follow up test showed that his hearing did not improve, and the last test was unreliable.  He scored somewhere between his last two tests.  At this point we were just frustrated, because now we would have to wait another month for his hearing aids to be ordered.  That is two months he lost.  Which means a further delay in his speech.

Throughout this whole ordeal, a lot of feelings went through my head.  I thought a lot about how he may feel different because he has to wear hearing aids.  About how kids can be cruel and instead of trying to understand, they may make fun of him.  As a parent you want your kid to have an easy life.  To make friends and be happy.  For a little while I thought this small bump in the road may prevent him from having that.  But in all honesty, it won't.  He'll be just fine.  He has the same fire in him that Seamus has, a quality that I'm relieved he got from his father.  How fitting, since the name Aiden means "little fire".  He's strong and he's witty, and he will protect himself.  I often think about those early days after their birth, and I get a little embarrassed about fearing for his ears.  If only I knew then, what I know now.  But that is such a cliche, so I"ll just stop right here.

This morning, Aiden got his hearing aids.  We recorded them being turned on.  And I am completely speechless.  Welcome to the world my child.  You now have the privilege to experience what everyone else takes for granted:  leaves rustling, rain falling, birds chirping, and so much more.  I'm sorry you missed out on it for oh so long.


video


 

celebrate.

My love.  Today we celebrate you.


I'm honored to be spending an 11th birthday with you and humbled by the fact that you chose me to spend this journey with.

Today is a special day, because it is your first birthday as a father.  Not only do you have a hot, young wife on your arm (I kid, I kid) but you have two beautiful children who adore you more than anything.  You are an amazing son, brother, friend, husband & father.  Your loved ones are so lucky to have you in their lives.  You have a kind heart, a warm soul, and the world is a better place with you in it.

Over the last 10 years, I've been privileged to have you by my side.  You are my friend.  You are my partner.  I've learned so many things from you about the world and about myself.  You have helped me to be a stronger version of myself.  I would be lost without you.

Over the last year our boys have seen first-hand what it's like to have the best father.  You are gentle yet strong.  You are loving and kind.  You are a patient teacher.  You are to your children what everyone hopes for.  I can't wait to watch you with our boys as they grow into young men. 

So today, I want to wish you the happiest of birthdays.  I hope today is filled with life, love, laughter and friends.  And let's not forget, a delicious beverage. 

9.01.2012

aware // hydrocephalus

September is Hydrocephalus Awareness Month.  How appropriate since it's also A&R's birthday month.  This year's annual Hydrocephalus walk actually falls four days after their birthday.  Another interesting fact:  this year's March of Dimes walk fell on the anniversary of the weekend I found out I was pregnant.  Am I reaching?  Haha, maybe.  But I think it's a little eerie.

Okay, back to business.  Hydrocephalus.  According to
this source, one to two of every 1,000 babies are born with Hydrocephalus.   I once read somewhere that the stats are so vague because there is no national registry that records the births of babies with this condition.  My brain is shot, so I can't source that one for you.  Anyway, if you ask me, that's a lot of babies.  But, before my life was so directly affected by this condition, I really had no idea what it was.


On top of that, there are
hundreds of thousands of Americans who acquire Hydrocephalus, like A&R did, or from other brain trauma.  As a matter of fact, I was shocked to find out that one of the NICU nurses had this condition, and after having a shunt placed and months of therapy, she was able to return to work.  Cheryl was her name.  She gave me so much hope for my boys.  Bless her heart.


If you're wondering,
there is no cure for this life threatening condition.  There is treatment, in the form of a shunt.  But there is no cure.  And shunts are in no way perfect.  They malfunction and get infected.  And in many cases, they need to be revised within the first year.  A&R both already had revisions to their shunts, and they're not even a year old. 


And the kicker:  There has been
no significant improvement in the treatment and diagnosis of Hydrocephalus over the last 50 years.  This is a problem people.  We need to know more. 


I started a team for the boys, called Raiden, in hopes to do the Hydrocephalus walk this year.  But alas, life got in the way and we cannot be there.  Either way, I will be donating to the cause, and I hope that you can too.  Every dollar helps.  If you would like to donate, click through the Hydro button on the left.  And from the bottom of our hearts, thank you. 


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