Monday, October 22, 2012

Refocusing

Over the last couple of days, I've done a really great job throwing myself a pity party.  Ronan has made some really huge leaps recently, and rather than celebrating those milestones, the fact that we should be celebrating them weighed on me.  I hated that we were so excited.  I wanted to be that nonchalant parent who said, oh my daughter just did that?  Cool.  My son is at the top of the chart?  Sounds good.  

Instead, we are buying champagne for a few ounces of weight gain.  We are texting our entire families at a high five, not because it's adorable (which it is!), but because it's a huge coordination and motor skill milestone.  We have nearly every toy and gadget that our therapists have.  Every day that he's a little less wobbly is momentous. 

The other day, it hit me that we are celebrating these wins wholeheartedly.  I wish we didn't have to.  I wish Ronan didn't have to work so hard.  I wish I could do it for him, which is the core of any parent-child relationship.  Every parent wants to step in to help his or her child.  Every parent wants to make it better, easier for his or her child.

But I think I was looking at this the wrong way.

There are so many things that I cannot do anything about.  No amount of internet research is going to fix the cleft in Ronan's optic nerve.  No amount of therapy is going to take away his hearing loss.  No amount of extra money or resources is going to take away the fact that this kid had to go through open heart surgery, take it easy with no tummy time for 2 months, and be on a low fat diet.  There is nothing I can do.  I am not in control.

But, there are so many other things that I can do.  I can make sure Ronan has the right glasses.  I can make sure I treat him as if he has no visual impairment, and give his brain the opportunity to "rewire", so to speak.  I can make sure his hearing aids fit properly, that they always work, and that they go right back in every time he takes them out and disassembles them.  I can make sure we are practicing his PT skills, that we work on the tasks our developmental therapist recommended, that we work on his facial nerve awakening.  I can make sure every aspect of his heart is researched and understood by us.

But I can also just love him.  I can cuddle with him and read his favorite book.  I can take him out in the baby carrier, which is one of his all time favorite activities.  I can just be his mom. 

When children are hospitalized for long periods of time and undergo countless procedures, an organization called Beads of Courage makes these special warriors a reminder of their bravery and courage.  They tell a story of what that child battled, of the many, many obstacles they had to overcome.  When the child gets a little older and wonders what happened, they have this tangible reminder of how much they can achieve.  Of how brave they are.  Ronan is lucky that he hasn't had to endure long hospitalizations, or multiple surgeries, but he has had his own battles.  I think I'm going to figure out something similar for Ronan, something he can look at and be proud of.  Let me know if you have any suggestions!

I watched the video of Ronan again, it was good to remind myself of how much this little man has accomplished.


Thursday, October 18, 2012

Another like "him"

Let me preface this post with a definitive, there is not another baby Marsolan on the way.

I don't know what it is about grocery stores.  I think people lose their minds when they walk into one.  Maybe it's like road rage, and the grocery store just transforms a person.  I have had more random, idiotic, and downright mean comments at the grocery store than anywhere else.  Combined.

When I was pregnant, people used to comment all the time about what I was buying, how I looked, and just about any other aspect of me.  I think pregnant women look welcoming, so people feel like they can come up and say just about anything.  When you combine that with what I'm going to call "grocery store brain", it's a recipe for disaster.

Fast forward to grocery shopping with a little guy like Ronan.  People question me all the time about his glasses, but it isn't what you'd expect.  I would expect people to wonder about how the prescription is determined.  Or how we knew there was an issue.  Or even what his vision is.  But instead I get things like, why would you make your baby wear glasses?  Are those fake glasses?  People get feisty, basically saying that I am torturing my child by forcing him to wear glasses.  You can imagine what people say about his hearing aids.

Anyway, I'm in line checking out, and the clerk says, what a cute little boy, and asks a few questions about him.  She basically danced around the glasses and hearing aids, so I offer my standard response.  Ronan has CHARGE syndrome, visual and hearing issues are very common with it, along with other sensory and health concerns.  She moved on, and somehow got on the topic of second children since she had just had her second.  She asked if we were thinking of having another child (which, frankly, I was surprised she asked, I rarely get that question.)  After saying that we were discussing it, and maybe we would have a second once things settled down, the woman behind me pipes up.

Well, what if you have another like him?

I nearly lost it.  Like him?  I get what she was saying.  What if I have another child with CHARGE syndrome.  Or disabilities.  Or whatever she was thinking.  My Ronan is amazing in every sense of the word.  He has met and overcome more challenges in his little life than many people have to in their lifetimes.  He went through open heart surgery.  He's hit so many milestones that simply were not promised to us.  And Ronan has done all this while being just a generally awesome, lively, and fun little guy.

She must have seen my look of horror, because she attempted to backtrack with some mumblings about insurance, the cost of his medical care, and other pretty ridiculous side notes to make up for her comment.

I am fiercely protective of my little man.  But in that moment, I just stood there in stunned silence.  And I left her with,

I should be so lucky.

Tuesday, October 16, 2012

Ronan Update




It has been such a long time since I wrote out a little about Ronan's overall health and progress, so here goes...  Sorry for all the medical jargon, but it's nearly impossible to avoid with our little guy.

Health
Cardiology:
  • This was our BIG appointment this week/month.  One year post-op.  The fact is that his heart is functioning well.  Blood flow looks good.  Sats are good, running 97 - 98%.  
  • The other fact is that his right ventricle has always been thick - too thick.  Ir has not improved.  Our cardiologist always attributed this to his pulmonary valve issues.  At this point after a repair, most people would have started to see an improvement in its thickness.  There are still some people who just take longer to see an improvement, so we are hoping Ronan falls in this category. 
  • Our cardiologist did go over a few things regarding the thickness of his right ventricle.  If this remains unchanged, it could affect his quality of life in some ways.  If Ronan were a 15 year old patient with this heart, Dr. A said he would not be able to clear him to play sports.  It would be too hard on him.  He wouldn't want to put a big strain on his heart.  That being said, he stressed that he can play all he wants with us and friends as he grows up, just that he wouldn't want to add competitive sports into the mix if nothing changes.  
  • We did ask if there were other treatments and medications that we could try to decrease the thickness of his heart, and Dr. A said that he didn't want to try anything yet, he still wanted to give Ronan's heart time to heal and improve from his surgery.  That being said, maybe in a few years if there isn't any improvement, we would try low-dose sildenafil (yes folks, that is Viagra, which is also used to treat pulmonary arterial hypertension).  
  • I did find a cardio-genetics clinic out of Children's Hospital Cincinnati, and was able to get Ronan in the Friday before Christmas.  He will have an array of tests (EKG, sedated Echo, etc) and be seen by a number of geneticists and cardiologists.  I am very excited to hear what they think.  
  • One final comment from Dr. A was that he wasn't so sure about the CHARGE diagnosis.  I asked about any other syndromes that tend to present with Ronan's CHD, and he went over a few.  Ronan has been tested for all of those, and did not test positive.  Just interesting to hear.
  • We are following up with Dr. A in 6 months.  

 ENT/Hearing: 
  • We had a follow up with ENT a few months ago.  Everything looked fine.  We did get a referral to have a cochlear implant evaluation, although at this point Ronan will not qualify.  His hearing loss is not severe enough, and his hearing aids appear to be helping.  Our point here would be to know what the surgeon would need in terms of a high res MRI or CT scan so that if Ronan is receiving any imaging, we can ensure we get those features rather than having to put him under for separate imaging later.  
  • We took Ronan to see our audiologist a few weeks ago.  She went over his hearing aid programming and observed him.  She felt that his hearing aids were programmed and functioning properly, and that at his next eval in December that we could start trying behavioral testing.  This is important since there is a standard deviation of error in the ABR testing, and behavioral testing can help hone in on the exact hearing.
Ophthalmology:
  •  As you may know, Ronan is farsighted.  He is doing well with his glasses.  At our last follow up, our ophthalmologist felt that everything looked good.  Our next follow up is in 4 months.  If everything looks good then, we'll go to yearly follow ups.  Woohoo!
Facial Palsy:
  •  Ronan still has a right side facial palsy.  We have been working with a facial OT out of CHLA (Children's Hospital LA).  We have seen him go from nearly no blink and him only closing his eye at sleep to a complete blink.  No eyebrow movement though, and no smile.  We are starting to see dimpling on his chin.  
  • We did a bio-feedback evaluation with Ronan, and we were able to measure muscle activation above his eye brow and along the large muscle group responsible for smiling.  This means that although we aren't seeing movement, Ronan is trying to move it and making small progress.  
  • Although we've been evaluated for smile reanimation surgery, given his progress I'm wondering if we will need to consider it.  We wouldn't start to evaluate him for it until age 4.  That's the best age for following care instructions, therapy, etc.  You can start with exercises around 2 - 3 when you can start to get your child to mimic your facial expressions.  People have seen another great leap in progress then.  Fingers crossed!
Gross Motor Skills:
  • Ronan is sitting unassisted, catching his balance, pushing up when highly motivated, and balancing for a few seconds at a time in quadruped (crawling position). A baby his age should be crawling, standing, cruising, and possibly walking.  When you adjust for his heart surgery, hospitalization, and rehabilitation, he is probably 3 months behind.  He sees a wonderful PT twice a week.  
  • On a separate rant, the state of California now does not cover his PT.  On one hand that means he's not grossly delayed, but on the other hand, this is just another medical billing hassle that we have to take care of.  
Fine Motor Skills:
  • Ronan is starting to point, pick up items with a pincer grasp, and has been able to turn pages of books for quite time time.  He's isolating his pointer finger.  He's on track here. 
 Speech Skills:
  • Ronan babbles.  All the time.  He combines vowels and consonants, and will occasionally mimic.  He also recognizes his name.  I think he may know da-da means Paul, but I'm not positive here.  Crying means mom :).  
  • You can also prompt him, and have him complete a task.  For example, you can tell him to push a shape into a container and have him do that.  
  • Ronan also has started to sign when prompted. If I work very hard, I can sometimes get him to sign "more".  
  • Ronan did have his first unprovoked sign tonight, which was amazingly exciting for us.  He signed "dog".  
  • Some of his speech skills are right on track, others are about 2 - 3 months behind.  He should be able to say ma-ma and da-da, as well as one or two other sounds we know are specific items/people/animals/whatever.  In all, I'd say he's doing pretty well considering he didn't get hearing aids until 5 months.  
 Genetics:
  • As part of a CHLA study, all three of us were tested for the CHARGE mutation.  We have not received the results yet, but no one things that Paul and I are carriers.  There are no "silent" carriers of CHARGE, and neither of us has a history of even mild CHARGE in our families.  
  • If Ronan tests positive, then we know he has CHARGE.  If he tests negative, he could still be diagnosed at some point as definitively CHARGE.  The test is only 60% effective at diagnosing, the other 40% of CHARGErs do not have the genetic diagnosis but do have the clinical diagnosis.  
  • From a clinical standpoint, Ronan has 2 - 3 major features (ears/hearing, coloboma of his optic nerve, and possibly a facial palsy), and 1 minor (congenital heart defect).  He may have growth issues, but that is looking less and less likely given how well he's grown since his heart surgery.  At the moment, this classifies him as between "possible" and "probable".  The facial palsy feature is up in the air since it developed post birth, and has improved.  I am not convinced that it is some how related to his open heart surgery in some way. 

Whew.  That was a lot.  In all, we are thrilled with Ronan's overall health and progress.  He's hardly been sick, but Paul and I are incredibly protective of his exposure to illness (knock on wood).  I would say our biggest concern is why hasn't his right ventricle improved, but he still has some time here before we'd want to try to take action.  We are also very interested in what the cardio-genetics clinic at Children's Cincinnati will say about Ronan.

Again, thank you for all your thoughts and prayers for Ronan.  He would not be where he is today without the love and support from each and every one of our friends and family.  Nearly every day I'm reminded of how not every family with a child who is medically fragile has the support of friends and family.  We are lucky.  And go Ronan!

Saturday, October 13, 2012

My dark cloud

Hearts scare me.  There is something so fragile, so final, about a beating heart.  This aspect of Ronan's health is what frightens me the most, what keeps me up the most at night.  I can deal with the sense curve balls - he can hear, or he can't.  He can see, or he can't.  He has a sense of balance, or he doesn't.  While those things are emotionally draining and roller coasters in and of themselves, they don't carry the same weight and finality as a heart to me.

Ronan has his cardio follow up on Monday.  I don't know if these appointments are supposed to get easier, but I can honestly say that they have only gotten worse for me.  The calmest, most peaceful, and least anxiety filled appointment for me was the one when our cardiologist told us Ronan needed open heart surgery.  Looking back, I realize this was because we were definitively told something was wrong, and given a plan to "fix it".  I put fix it in quotes, because in Ronan's case, his congenital heart defect will never be fixed.  There will always be monitoring, and follow up procedures.  Anyway, that appointment was a relief to me, we knew what was happening.

Now at every appointment, a part of me is waiting for the other shoe to drop, so to speak.  I'm always waiting for signs that he needs a follow up procedure.  Or that there could be something else wrong.

Watching Baby Signing Times
Our cardiologist told us after Ronan's open heart surgery, that we should get used to the idea of not doing an echo every appointment.  Dr. A told us he will only do an echo if he thinks there is a reason to do one.  Given our level of involvement, research, and Google MDs, we want to see his beating heart for ourselves.  The dark cloud?  We have always had an echo.  We have never had a follow up appointment without one.  Deep down, I know why but I'm secretly hoping this goes away, and never peaks its head out again.

My other worry is that we've seen some possible signs of decreased function.  Possible signs, not signs, but something nonetheless.  About a month ago, I nearly had an anxiety attack when I saw some bluing around his mouth.  This was the sign, THE sign, after Ronan was born that something was wrong.  That he had a severe heart condition.  I kept that first instance to myself, thinking that I would bring it up if I saw it again.  And then I saw it again.  And Paul saw it.  And our nanny saw it.

Kids can see dips in their oxygen level with teething, so I keep telling myself that was the cause.  We've taken him in to have his pulse-ox read a few times, all with normal results for Ronan.  When I mentioned getting a pulse-ox machine, our pediatrician, knowing us, told us to just bring him in rather than drive ourselves crazy monitoring it. I also keep saying that Ronan will tell us when he's starting to not feel good.  We will notice.  Each day he is his normal, lively, funny self.  That has to mean something. 

The other thing I cannot shake, while we are on the topic, is a mother's intuition.  When I was pregnant, I had this feeling.  A feeling that someone was not quite right.  I shook it off as being nerves, I thought I was just scared at the thought of having a child and being responsible for a little, tiny life.  My mantra was "the vast majority of babies are born healthy."  Now that I've lived this self-fulfilling prophecy, every inkling that something is wrong makes me wonder if I'm worrying, or if this is mother's intuition.

Given that my nervous outlet is cleaning and organizing, I'm sure our house will be sparkling by Monday.  My husband will probably regret being out of town this weekend, since throwing away things is always guaranteed in this process. 

If you think of it, send a positive thought, a prayer, good vibes, whatever you believe, to Ronan this weekend for his cardio follow up.  And maybe something for my sanity.  Or send some wine :)
I just love how he's crossing his feet!

Thursday, October 11, 2012

The Type of Mother

I had a conversation this past weekend that really made me think.  Someone asked about my views on parenthood now, compared with before I had a medically complex child.  As I thought about this, I realized how different of a mom I am now, versus what I thought I would be even as I neared my due date.  Some of us are lucky to have fantastic role models, and I certainly did.  I had a lot of great ideas that came from watching my parents, and I had a lot of great ideas that came from my life experiences.  But there are ideas that I now have rethought. 

Before Ronan, I was judgmental.  Maybe not outwardly judgmental, but I definitely thought things that I am ashamed of now.  I wondered what other moms were doing wrong when a child threw a tantrum in the grocery store.  Although I would never have said anything to those moms, I was definitely guilty of wondering what went wrong, so to speak.  I scrutinized what I saw kids eating, wondering sometimes how a mother would even consider feeding her child that particular food.  I had views on everything from what type of paint should be on the walls to how I would conduct nap time to what vaccine schedule I wanted my child to be on.   I was going to breastfeed my child exclusively until I went back to work.  I was going to make all my own baby food.  I wasn't going to let my child watch TV.  I wasn't going to keep my child inside in the winter to protect against colds.  I really could go on and on.

I am ashamed of that version of myself.

Now I see a mom who is calmly shopping while letting her child throw a tantrum, and I want to tell her she's doing a fantastic job.  I want to give her a high five for being so patient and tell her that I can only hope to have that patience when Ronan gets older.  When I see a child acting out in some way, my automatic response isn't that the parent should control the child, but rather, an empathetic thought that maybe there's something going on with the child that we can't outwardly see.  Although I have very specific viewpoints on food and diet, I feed my child butter and coconut oil at nearly every meal.  If Ronan seemed interested in french fries, I'm not sure I would turn him away from that now.  I don't have time or energy to research paint types or obsess about other environmentally impacting items.  Ronan is caught up on his vaccines now, and gets pretty much whatever is available for him.  It would be a shame for Ronan to overcome all these things and then contract polio during one of his many doctor appointments at the hospital, or something along those lines.  I made it to Ronan's surgery, then faithfully pumped through his recovery, and managed to keep up my supply until February.  Although he wasn't exclusively nursing, he's gotten the milk one way or another.  I dream about making all my own food, but I barely get the chance to make my own food :)  And Ronan loves his Baby Signing Times videos!  I am also fiercely protective of Ronan's health, I'm sure I've offended more than one person with my demands about recent illnesses, hand washing, and the like.

And my biggest lesson?  I cannot control everything.  Everything will not be perfect.

Sometimes I wonder if Ronan chose to come into this family to teach us and teach me some valuable lessons.  I believe that we are calmer and more empathetic parents.  I believe that Ronan taught us about this vast gray area that exists in most areas of life, that I knew was there, but I hadn't necessarily experienced myself. I think that Ronan has helped us prioritize our lives.   Sometimes I wonder if all parents experience this level of awakening; I think they must, but maybe in other areas of their lives.  I have no doubt that if Ronan was totally healthy, I would be learning other important lessons from him, they would just be different.  To all the parents out there that I silently judged, I am sorry.  I am lucky to have this amazing little boy who taught me so much about being a mom.  I know I have many more lessons to learn, and I am happy to learn them. 

Monday, October 8, 2012

The heart of it...



One year.  One whole year since Ronan's open heart surgery.  One year since Paul and I kissed him and touched his face before handing his life over to another person.  One year from when Ronan's heart was stopped and he was placed on bypass.  One year from when his heart was dysfunctional.

The 6 weeks before Ronan's open heart surgery were the best and worst weeks of my life. We brought this little life into the world.  From early on, it was clear he had a funny, complex, and passionate personality.  He was one of those babies who adored being cuddled and held, and no swaddle was tight enough for him.  But with these precious moments, we had some of our darkest.  Doctor after doctor came to see us, giving us news that no parents want to hear.  Every appointment brought some degree of unknown or bad news.  I don't think we had one "typical" appointment.  I've never experienced such highs and such lows in my life.  Thank goodness we have some amazing friends and family. 

In honor of the occasion, we bought Ronan a red balloon to release.  He loved it.  Watching him look at it, and let go of the balloon was nothing short of wonderful for me.  It said a lot to me of where he came from, and how much process he has made.  After he had his surgery, I think I was always waiting for the other shoe to drop, so to speak.  I was always waiting for the next open heart surgery.  In some ways, I was also releasing something - all the tension and stress that I built up waiting for another major health event.  

As I was thinking about Ronan's open heart surgery, I realized how much has happened in that year.  Ronan hasn't had any other procedure or surgery.  He hasn't been under anesthesia since his heart surgery.  AMAZING.  He's made some major gains after his 2 - 3 month recovery.  Every week he seems to be doing more.  Every week he is so much stronger.  In just the last few weeks, he's learned to bang objects together, clap other people's hands, and hold his bottle with one hand.  He has also learned one thing in particular that melted my heart.  Ronan kissed me for the first time today. 

The balloon floating away...
Ronan is the happiest little man in the morning.  The kid just wakes up babbling and happy as can be.  He's content to just play on his own, which is nice for us (although he doesn't have his hearing aids in so he's extremely LOUD.)  Every morning one of us walks in to get him is the happy day of his life.  Ronan gets so excited.  He laughs.  He reaches for us.  When you pick him up, you get the most wonderful hugs and babbling in the world.  And this morning, I got a kiss amongst all that happiness.  There are some milestones that just "get you" as a parent.  The last one that touched me in this way was when I could first make Ronan laugh.  Here's to many more years of kisses, Ronan!