6.28.2013

five (firsts) for friday

The first of many dinners eaten outside this summer, with live music of course. 
One of their first picnics at the park.
First party after bedtime hours.  We didn't get home until close to midnight.  Yikes!
Ryan's first time out of the infant tub.  The boppy was just a trial.  I think we're going to buy him a bath seat!
Aiden's first time driving.  Well, not really.

Happy Friday!

6.27.2013

my world today

I want to share something with you all.  It's a blog post that I wrote a long time ago, but never published.  I'm not sure why.  Whether it was shame or guilt or maybe there was never a right time.  I came across this draft today, and when I read it, it felt oddly foreign to me.  I don't recall exactly when this was written.  A few months ago.  The winter probably.  I'm sharing it now because, although I'm glad to say that this is no longer how I feel, I want it documented.  I feel the same way about our time in the hospital.  Though it was probably our darkest hour, I never want to forget it.  It is something I experienced and something that made me who I am today.  So if you're interested, read on.

"My feelings surrounding A&R's birth and first months of life are something I struggle with every single day.

I live in a world saturated with prematurity.  And whether I like it or not, this is where I'll stay.

It's hard for me to remember what I was like before the kids were born.  Sometimes I yearn to go back to those days, just because I know it was easier.  Those days when I was just a girl.  A girl that was able to just live and to be.  A girl who didn't worry about doctors appointments, and milestones, and why did this happen to us, and what does the future hold and how will we handle it.  Sometimes it feels like I don't know where I belong because the truth is that my life and the world I now live in is very far from what is used to be.  I'm in a world of therapists and doctors, surgeries and diagnoses.  Answers I don't want to hear.  And questions I don't want to ask.

It's lonely.

Don't get me wrong.  I have a wealth of support at home from friends and family.  And  I love my children and all that they have brought with them.  I love the people I've met and the stories I've read.  I appreciate the strength I've gathered.  The knowledge I've obtained.  The goals I secretly set for our family.  But sometimes it's downright overwhelming and isolating.

But I did this.  I flung myself into this world.

Some might say I'm obsessed with prematurity.  Constantly googling and reading and thinking.  Wondering why and why not?  What if and how come?  Writing things here.  Things that I've written before but somehow can't seem to let go of."

And that's it.  I never finished it.  Maybe I wasn't meant to.  

I've read this entry about a dozen times this morning.  It seems a little angry and resentful.  And while I'm glad to proclaim that (most of) these feelings are behind me, I'm ok with having felt them at one point or another.  

Life has certainly given me a lot of lemons.  Mostly good, some bad.  What's key is that the bad turned into good.  And look how cute the most important lemons are!

 




6.26.2013

21

Darn!  I missed it again.  Yesterday the boys turned 21 months.  I'm off by a day, which is much better than it's been lately.  Which is fitting because that's how our family operates lately.  Not perfect, but better than it's been.  And when I say operates, I really mean Ryan and his sleep.  Ha!

This is yesterday, at 21 whole months:


It is such a struggle to get nice photos of these two.  Most come out blurry like the top two, because well ya know, toddlers don't like to sit still.  A lot of the photos I capture are of Ryan looking at Aiden like the bottom left.  He really loves his big brother.  <3  The final photo, with some filter help from the forgiving IG, is at the bottom right.  These two kill me.  They look so big with their hair parted to the side and in their old man white t-shirts.  

For shits and giggles, let's see where we were one year ago:


9 months old.  Such little bebes.  


6.24.2013

to their health

If you've followed us for some time, you know that A&R have some outstanding issues related to their prematurity, and as a result are being followed by quite a few specialists.  When we first came home from the NICU, we literally had 1-2 medical appointments per boy, per week.  As they've gotten older and as some of these issues have resolved or remained stagnant, those appointments have gotten less frequent.  Today, when you look at our calendar, we can go as long as a month without having a single doctor visit to go to, and let me tell you that it feels so good.  Here is where we're at with the boys' overall health.

First and foremost we will start with their neurosurgeon.  We recently had routine 6 month follow up with him to check on A&R's shunts and their general well being.  Everything checked out fine and we were instructed to come back in one year!  At the same time the boys will have brain MRI scans done just to make sure everything is ok on the "inside", but unless there is some kind of emergency we are cleared for the 365 days!  Hallelujah.  And after that, it will be two years, and so on and so forth.

Their pediatrician has seen them a little more often than he would a full term baby.  The last time we went for a check up was their 18 month well baby visit.  Everything checked out fine except the doctor wasn't exactly thrilled with their weight gain.  I didn't argue, but I didn't worry all that much either.  After all, Aiden had surgery the month before and both boys had numerous colds and even the flu.  All of which turned them off from food for a bit.  We were instructed to start them on pediasure to aid with weight gain.  I've been giving them half milk, half pediasure and when we go back this month we will see the progress they've made.  Usually after 18 months, the next well baby visit is 2 years, but our pedi wanted to see us back at 21 months.  Which is this month.  

We've nixed the NICU follow up clinic.  They've asked to see us every 6 months or so and we opted out of our last appointment.  It's usually a three hour appointment, held during nap time (which makes for some really pissed off babies), and at the end of everything we get a score of how far behind or how caught up the boys are.  Truthfully, the doctors at the clinic change frequently and they really don't tell us anything we already don't know.  The kids have enough people following their progress so we felt comfortable closing that chapter of A&R's lives.  One step close to normalcy.

Opthamology has cleared Aiden for a whole year, but since Ryan wears glasses we go back next month to check his eyesight.  At the present time he's supposed to be wearing his glasses all day long and an eye patch on his good eye (to strengthen his weak eye) for four hours a day.  We do the best we can, but baby boy hates both with a passion.  And tears everything off his face the second we turn around.  

Aiden recently had a hearing test that showed his hearing is still improved from his original tests around a year ago.  So his diagnosis is still mild hearing loss.  He goes back in 3 months for another hearing test and we get new hearing aids in two weeks.  He needed new ear molds because he's outgrown his old pair.  Now getting him to wear them and stop eating them is another story.  For another day.

Aiden has also had a couple follow up visits with his oral surgeon after his cleft repair.  Everything healed beautifully.  We go back next week and eventually will be meeting with the cleft team again to see what our game plan is for the future.  Since Aiden's cleft reached his gum line, he will need more surgery when he is older and his permanent teeth start coming in.  

Lastly, (I think) is Aiden's pediatric surgeon.  Last May he had an inguinal hernia repair.  For a while we thought that his internal incision opened up and that the repair was not successful so we've been watching things.  We and his pediatrician agree that everything looks back to normal down there, but we are waiting on a last follow up with the pediatric surgeon to confirm things.  

Slowly but surely we are knocking specialists off our list.  Eventually Ryan will see his physiatrist again, but we're not sure when that will be.  Therapists are a daily (well almost daily, weekends are free) staple in our house.  I recently counted that we have 19 sessions per week between both boys.  Thank goodness they come to us, because if we had to travel for all those appointments there would be little time left for anything else.  

One of these days I may do a day in the life post just show you a snippet of what our lives are really like. 

And because I can never post without at least one photo, here are some recent faves:


* If you look to the right, I've added an Instagram widget to the blog.  You can click on those photos and see what we're up to almost daily.  Or you can just follow us on IG from your own account :)

6.12.2013

20


I'm so, so late on the boys' 20 month post, but better late then never, right?

To begin, here is a recent photo that explains the relationship of my children.  Aiden is a piggy and usually eats faster and more than Ryan.  Obviously Aiden finished his granola bar first so he decided he would help Ryan out.  Ryan does not mind.  He does not mind at all.  
 

A&R have really blossomed lately.  Maybe it has something to do with their age.  (At 20 months their doctors still adjust their age to 16.5 months.)  Or maybe it has to do with their wonderful team of therapists.  We worked hard and we worked long to get here, but we are finally at a place where we are happy with everyone who comes into our home to work with our boys.  Yes, socially we get along, but more importantly we are happy with them professionally.  The progress they have helped our boys achieve is phenomenal.

A few months ago Aiden was a very quiet boy.  Once he had his palate repaired, he regressed a little bit in all areas.  This was normal and it was expected.  After all he did have major, major surgery.  But now, 4 months later, he is talking so much and taking off with all of his milestones.  He walks everywhere now and sometimes gains so much speed that he's almost running.  A couple days ago he saw Ryan jumping with the help of his therapist, and he tried to jump too.  He only got his heels off the floor, but the confidence he needed to attempt this is amazing.  

He has around 10-15 words, including up, baby, milk, more, eat, bye-bye and hi.  He also has some phrases:  "Hey, you" and "More A-B" (which he uses when he wants us to sing the ABC song to him).  He gives hugs and kisses.  He is a champ at independent play.  And he loves blocks.  However, books can keep his attention longer than anything else.  His favorite foods are meat, meat and more meat.  Chicken, steak, sausage, bacon.  If it's meat, he will eat it.  And he is obsessed with milk.  Give him water and he will sip it but then he quickly asks for milk and chugs it like he's never tasted the sweet nectar before.  He is really such a joy.  And so, so smart.  I think it's safe to say that we are lucky to be the parents of such a sweet little boy.

Ryan's  sleep issues have improved tremendously but only because we caved and have started allowing him to sleep with us at times.  He starts his night in his crib, but if he wakes and isn't able to fall back asleep within a few minutes we bring him into bed with us.  This was something we swore we would never do, but after almost 6 months of sleepless nights, something had to give.  We recently discussed these sleep issues with his neurosurgeon who assured us that his behavior has nothing to do with CP or his development, but rather he needs to be sleep trained.  We aren't ready for that at this point, so we will continue to give him comfort when he needs it.  Let's face it, Ryan isn't going to be 15 and sleeping in bed with us, so if baby boy wants to be near mommy and daddy, it's ok.  It allows us to get some sleep most of the time, so we are all happier this way.  

Sleep is important for us, but also for Ryan so that he can continue to put in the work he needs to get mobile.  He is gaining so much more control of his own body and you can tell he just wants to get moving.  I think it's safe to say that he is an official "sitter'" now.  He twists and turns his torso to get what he needs.  And he is able to transition from laying to sitting with just a little assistance.  His trunk muscles are much stronger than they've ever been, and we are now working on getting him to bear weight on his hands and knees.  He hates this position, but it's something he's going to have to get used to in order to eventually crawl.  

His right hand has significantly loosened up and we've even caught him using it a couple times.  We are currently waiting on a hand splint that we have requested through EI.  Mostly we will use the splint to rotate his wrist so that his palm faces the midline of his body.  Right now his palm is always either out or down, and this makes it hard for him to use that hand for feeding and other activities.  

Ryan has developed quite the personality...wise ass if you will.  I think I've mentioned this before, but as he gets older it just gets more and more apparent that he is smarter than us all.  He likes to pick on Aiden...pull his hair, bite him, pull on his shirt collar.  I think it's probably payback for all the food Aiden steals from him.  We try to intervene whenever we feel it's necessary, but mostly they have fun with each other and it's not an issue.  I kind of like the idea that Ryan is turning into a strong little boy.  I don't want him to be a bully, but I do want him to be able to defend himself.  You know, when I can longer do it.  ::tear::  

Ryan's new word for daddy is "dadu".  Not sure where that came from but it's so cute and funny.  He also keeps repeating a word that sounds like "dagom", but I have no clue what this is.  He recently learned to sign "more", "milk" and "eat".  His favorite food is...hmm, I don't even know.  Pretzels probably.  He's been so picky lately, I've taken to feeding him animal crackers dipped in sunflower seed butter for breakfast.  Hey, whatever it takes to get him to eat, right?!  Especially since his pastime is throwing food at his brother.  It's really hard not to laugh at that one.  I know, I know, I'm encouraging it.  Whatever, he knows I love him.  Such a sweet boy.  

I was looking at some old photos from last summer and I can't believe how much A&R have changed.  They're certainly not babies anymore.  I know I keep repeating that, but I can't get over it.  
 
   
Left photos are from June 2012; Right photos are from this week when we gave them their first kitchen sink baths.  Such a fun time!

  

6.07.2013

shunts are scary

...until they're not.

I so vividly remember the day (or the feeling, rather - because at that point days just melted into each other and it's hard for me to discern what happened when) we found out that Ryan developed hydrocephalus and that he would likely need a shunt.  He was diagnosed first, about a month before Aiden.  

Shunts were so foreign to us at that point, and I remember talking to a fellow preemie mom in the family waiting area about her son, who was born premature two years prior and developed hydrocephalus as a result of his brain having bled.  She made it seem like it was no big deal.  Something that was a part of him.  A simple device granting him the gift of life.  Woah, that sounds like a big deal to me.  

At that point there was a small chance that Ryan wouldn't need to be shunted.  That the hydrocephalus wouldn't progress or that it would resolve and he would be shunt free.  We held on to that small glimmer of hope, until the day that our bubble was burst and we were told the inevitable.

I've shared this before, but for the purposes of this post here it is again.  This is what a shunt looks like on the inside:

Source

There are two type of shunts used to control hydrocephalus.  VP, which leads to the stomach and VA, which leads to the heart.  A&R both have VP shunts.  So basically you have a hard plastic valve (A&R have it behind their ears) that is attached to tubing leading into the stomach.  The valve controls the flow of Cerebral Spinal Fluid and the tubing leads it into the stomach where it can be re-absorbed into the body.  Everything is underneath the skin, and there is extra tubing so that the shunt can grow with the child.  

When I first saw Ryan after his shunt placement, I was shocked at how visible the valve was on his little head.  His head was also abnormally large for his body at that point because of the fluid that had already built up.  With time, his head size and shape has improved (though he still has some lumps and bumps that he probably will always have) and the shunt is barely visible under his hair.  Same with Aiden, though his shunt seems to have really descended into his skull and you really can't even tell it's there.  

I won't lie.  I was terrified of the shunts when we first came home.  I couldn't imagine what stress we would be dealing with day in and day out, worrying if everything is as it should be.  

Shunts fail.  Most often within the first two years of life.  We were told this numerous times, and it really didn't help with the anxiety that comes with having your child endure brain surgery.  We are proof that shunts fail.  Within the first year of life, both boys had to have revisions.  As a matter of fact, Ryan has already had two.  While it's scary to think about, we thank our lucky stars that our boys came out of surgery happy and healthy on so many occasions.  And also that we are surrounded by a team of people (ourselves included) that are armed with the knowledge necessary to recognize when there is a problem.

What is the point of this post?  Well the other day a reader reached out to me in preparation of her own daughter's shunt placement.  She wanted to know if I could offer any advice, things that I wish I  would've known going into it.  

My simple answer is that it is scary...but then it's not anymore.  

Today, at 20 months, I barely think about the boys' shunts.  The first sign of malfunction is usually vomiting.  A lot of vomiting.  All day long.  Today, if a kid throws up, I no longer automatically suspect shunt malfunction.  It took me a while to get here, and for a long time I was really anxious about any change in behavior (because if you google shunt malfunction, you'll find a long list of symptoms associated with it).  That doesn't mean we don't have to be aware.  Or that we don't have some extra work cut out for us when we want to do simple things such as travel (we have to carry discs of their last brain MRIs and make sure we have the information of the nearest hospital equipped to handle brain surgery).  Or that we aren't constantly on the lookout for new treatments or techniques in therapy.  But our lives are so normal.  So happy.  So blessed.

I haven't been around in a while.  No excuse really, other than the fact that I've been enjoying my family.  Loving my life.

I owe you a post about the boys 20 month birthday :)  Seems silly, at this age, to continue with the 'monthdays'.  They're so big.  But they're learning new things every day.  I have a lot to talk about.  I just need to organize my thoughts.  

Here's to tomorrow.  

And just so I don't leave you hanging, here's a special photo from this morning.  A&R's first time playing with stickers.  My heart just melted when I walked in on this.


 
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