Friday, December 28, 2012

Hope for the Holidays

Well, little Ronan, we have sure had an eventful last few weeks.  And of course, you have taken the path we did not expect. 

As you may remember from my last post, we had concerns that Ronan may have hydrocephalus, which is fluid on the brain.  His head size had dramatically grown between his 12 month and 15 month appointments.  We were very worried on many fronts - we needed to get in at CHLA for a high res MRI as soon as possible, so that we would potentially have time to schedule a surgery before Christmas.  Months ago, I scheduled a cardio-genetics at Cincinnati Children's Hospital on December 21st.  We really wanted to get Ronan to that appointment, and of course, Christmas.

Ronan went in for his high res MRI on the 18th.  We were relieved to find out that Ronan simply has a big head :)  No fluid on his brain.  Sometimes kids can grow in one area first, and then the other areas catch up.  Here's to hoping his body catches up to his 96% head!  If that happens, we will be purchasing a very, very expensive bottle of champagne.

Ronan getting his sedated echo
We then flew to Cincinnati for the holidays, and for our cardio-genetics clinic appointment.  Ronan had a sedated echo and EKG, and we met with several specialists.  To remind you where we were with Ronan's heart, he had a fairly straightforward case of pulmonic valvular stenosis, where his pulmonary valve did not function properly.  They were not able to open up the valve with an angioplasty, which is the usual path for children who have this type of CHD.  Ronan had to have his valve removed, and a transannual patch with a monocusp valve put in place.  Although most cases can be resolved with an angioplasty, Ronan's route was not totally unusual.  The concerning part of his heart was his right ventricle thickness and function.  It was not completely indicative of the state of his pulmonary valve, and we were concerned that there may not be enough blood flow, or that he may have cardiomyopathy.

Paul and I went into the appointment not really knowing what to expect.  Our cardiologist had started to talk to us about what a heart in that condition would mean long term.  We were scared.  The sedated echo gave doctors a much better view of his heart than we expected, and best yet, the news was good.  We have never had such an optimistic and uplifting appointment as that one.  Dr. B told us that Ronan's repair was "beautiful", and that he may not need to have another open heart surgery until he was 15, and at that point it could be a cath procedure.  Dr. B had no concerns over his right ventricle, and felt that his function was good.  

After the appointment, Paul, Ronan, and I had the privilege of having lunch with the parents of a little boy, Connor, who is 12 weeks old and is recently diagnosed with CHARGE syndrome.  It was such an incredible experience for us.  We remember too well those early months, and the time when we honestly wondered how we would ever a happy family.  I remember wondering how we would ever manage the frenzied pace of our lives.  Now, I could not be happier.  This journey feels like a marathon, and there are certainly days when I wonder if we can keep this up, but it feels like a marathon we can run together.  I hope that we were able to convey that sentiment to Nikki and Josh, and to show them how different things can be in just a few months or a year.  This was the best thing I did all year, hands down.

This holiday season has been one filled with hope for us.  Hope that Ronan is on his way to a big growth spurt.  Hope that Ronan's heart continues to impress his cardiologists.  And hope that we tried to share with other parents early in their CHARGE journey. 

Tuesday, December 11, 2012

A bump in the road...

I've take a bit of a hiatus from blogging to enjoy a rather long and delightful period of normalcy in the Marsolan house.  Besides the regular follow ups and therapy appointments, we just enjoyed being a family.  It has been awhile since it really felt, well, normal.  Paul and I did things like take Ronan to the Santa Monica tree lighting ceremony, where he promptly decided he wanted to go to bed 5 minutes before the lighting occurred.  We got a tow behind for our bikes, and took Ronan out for his first bike ride.  Ronan saw Santa for the first time.  It's been a special last few weeks...

But, we do have a new bump in the long and winding road that is Ronan's health.  Ronan has always had a bigger head.  When he was born, his head was around 40%, while his height and weight was more in the 15 - 25%.  He held those stats up until his heart surgery.  After running into some complications with chylothorax and chlopericardiumx (his lymphatic system was damaged and he couldn't process medium chain triglycerides for about 2 months), Ronan dropped off the growth chart for weight and height.  By about 10 or 11 months, we were creeping back onto the charts, but his head has always hovered around 40 - 50%.  After seeing our pediatrician around 13 months with Ronan at these same stats, everyone was concerned when his head jumped up to 96% at his 15 month appointment. 

If he were to have hydrocephalus (fluid on his brain), that could cause him to be uncomfortable and could delay some of his development.  Once this pressure is alleviated, sometimes children can see a nice improvement in their development.  Part of me hopes if the tests show hydrocephalus, that maybe Ronan will see an improvement with his development.  In the grand scheme of Ronan things, this is a minor test, and if needed, not too major of a procedure. 

Ronan will go in for testing tomorrow.  Please keep him in your thoughts.  He has a critical airway, and he can take a bit longer to recover from anesthesia.  I have mixed feelings on what I hope to see.  But I do know whatever it shows, it won't change Ronan's strong spirit.



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!

Monday, September 3, 2012

To tube, or not to tube...

Recently, I've been thinking a lot about some decisions Paul and I made early on with Ronan.  One in particular, the decision not to use a feeding tube, has been on my mind a lot.  When Ronan was brought to the NICU, he got NG tube.  We were told Ronan had difficulty coordinating his eating, and that he had a weak suck.  This, coupled with his heart condition at the time, which was very severe, had the doctors concerned.  Since his heart had to work so much harder, they wanted many more calories in him.  And thus started us down the road of constantly monitoring calories and intake...

At times I was angry Ronan had this - he got his NG tube before I was even able to go to the NICU and see him, which was the next day.  When I worked with a nurse and lactation consultant prior to him being whisked away, no one even mentioned that anything was out of the ordinary.  Maybe he had trouble with a bottle, I don't know.  By the end of his time in the NICU, the neonatologist was happy with Ronan's progress and intake, and we were sent home sans-NG tube.

In his first few weeks, the topic of getting the NG-tube back came up.  Honestly, I was just so overwhelmed.  We were literally going to the cardiologist several times a week to monitor his heart, just waiting for it to get a little worse and schedule him for his open heart surgery.  We knew he couldn't hear and we knew there were vision issues.  And there were so many other unknowns, and trips to specialists, that I honestly couldn't handle this.  Ronan was gaining and growing, albeit a bit slower than normal, so we pushed to not get a feeding tube.  We felt that the heart condition was likely the source eating up all those extra calories, so we figured we would be fine once Ronan had surgery.

Watching football 
Looking back, there are times I wish we had gone through with it.  We wouldn't have had to fight so hard with Ronan to get the right amount of calories with his special low-fat formula after his surgery.  Just the very smell of that formula was enough to make Paul or I throw up, and Ronan truly struggled with the formula.  He fell pretty far off the growth chart, but did keep gaining a very small amount.  By the time he could come off his special formula, we had lost so much ground.  I wonder if we had an NG tube or a G tube, if we would have been able to keep up more with his goals, and keep him on the growth chart.

Ronan did pretty well after coming off that formula, he gained at a much better pace.  But given how far below he fell, he only recently got back on the chart.  And now that he's a year old, his weight gain has slowed again.  Ronan is also a super active kid, which doesn't help his calories!  He's probably about the 4th or 5th percentile in weight.

I can't help but wonder if we would have tube fed him, would he now be much higher on the growth chart?  Would we never have dropped off after the heart surgery?  Have I set him up to never get back on track?  I know it must be hard to be the small kid in school, but what if you are the small kid, with glasses and hearing aids?  All we ever want as parents is for our children to be happy, and I wonder if now later in life, he will have even more challenges.

My little tiger
On the flip side, Ronan is doing so well with solids.  He's really made process with different textures and flavors, and he has started picking food up and feeding himself.  If he had been tube fed, I don't doubt we'd be further behind in these areas.  Ronan doesn't seem to have much in the way of problems from a sensory standpoint, which is a common issue for CHARGE kids.  The only sensory item that concerns me is that he doesn't like people manipulating his hands, which makes demonstrating sign language challenging, to say the least :).  Maybe some of the lack of sensory issues is due to Ronan always being able to eat, play with his food, and now feed himself.  But, I wonder if the issue of growth is a bigger deal than say, dealing with texture issues later in life with food.

I suppose as parents, we will always have things that we question later in life.  This is one of those areas.  I hope that I haven't set my son up for other challenges in the future.

And, I wanted to leave you with an adorable video of Paul explaining some fine points of football to Ronan.  I love my boys!

Sunday, September 2, 2012

Ronan's Gift

As you may know, I am part of a number of support groups as I've come to terms with the journey we have ahead with Ronan.  One thing I've come to notice is that we are in the minority in terms of support.  So many parents, beyond facing the enormity of a sick child, are also dealing with the loss of friends and family.  They are dealing with a loss in their support system.  I've heard far too often of grandparents who do not want to be involved with a special needs child, siblings who have never met their niece or nephew, friends who stop trying to help.  We are so lucky to have experienced the opposite.  I know I have written about this a few times, but the support we receive is the reason Ronan has been able to soar. 

Another area that I hear a lot about is marriage.  When you and your partner have a sick child, everything stops.  You are no longer concerned with anything other than keeping your child alive.  Time stands still.  It feels like a lifetime ago that Ronan was in Children's hospital having open heart surgery, and our time there feels like another lifetime.  There is something dangerous that can happen though, after the dust settles, you are home, and your child is well along the road to recovery.  All of a sudden, you realize there is another person, your partner.  For so long both your energies have been focused entirely on your child, and now you actually have to interact.  You have to speak to one another about something that is completely unrelated to the medical field. You have to go do something other than go to a doctor appointment.  And sometimes that person can seem so far from you, from what you remember.  And sometimes, after all that effort was made in the marathon of keeping your child alive, you have no energy to bridge that gap. 

I am lucky.  One of our nurses in the CV Acute said something to us that stuck.  She said, "Wow you two really seem to get along and work together.  Don't forget to take time for each other.  Too many people don't make it out of something like this"  As selfish as it felt at the time, we did take time with one another when we had the opportunity.  We snuck out to a quick dinner when Ronan was on the standard floor of children's and our parents were in town.  We went for walks when family was in town and could watch Ronan.  We took advantage of the best babysitters - ICU nurses - and would spend a few moments outside, together.  We took all the time we needed to talk, to cry, to try to understand what was happening.  Then Ronan started to get better.  We felt that we could find a babysitter, and we were lucky to be able to transition to a family friend.  We found a few wonderful people that we felt comfortable with, and we started going out to dinner once a week.  The first few times we only talked about Ronan, his health, his milestones, but then we started reconnecting.  We started having those long conversations that brought us together in the first place. 

I never thought we had a bad marriage, or anything less than a good marriage.  After having Ronan, and going through this bumpy experience of a medically fragile child, I feel that we have a fundamentally sound, and phenomenal marriage.  We are confident in one another.  We know we can lean on another.  I do think that one reason we came out of this stronger, was that we did take time together, even if it was a few moments. 

If I could give one piece of advice to a parent starting down this path, or really even just having a child, it would be to not forget one another.  Not to forget about your union.  That is the foundation of your family, and what you will be able to fall back on when you have to focus on keeping an infinite number of balls in the air.  A part of Ronan's legacy will be the strength he imparted in his parents' marriage, and the knowledge that they really can thrive even with odds like these.  

Friday, August 31, 2012

Wins and worries...

Ronan has had an amazing past few weeks and months.  It is as if he decided he feels safe, he feels healthy, and he is really going to push himself.  In the last month, Ronan can pretty much sit on his own for long periods of time.  I'd say indefinitely, but he hasn't learned how to catch himself or get in and out of sitting, so we have to be right there with him (or have some pillows in the area).  Ronan has gotten good enough that our PT told us to stop practicing sitting and move onto other areas!  That is a big vote of confidence coming from our PT, who is always cautious.
 
One area that has been of growing concern for us, has been that Ronan hasn't shown much interest in picking food, like puffs, up and putting it in his mouth.  He typically doesn't put a lot of things in his mouth, which may sound like a good thing.  In reality, this is a valuable skill that Ronan was not practicing.  It got to the point where our PT actually mentioned something this past week to us.  In true Ronan fashion, he was apparently on his own time.  I always put a few puffs in front of him, but the best I've done has been for him to eat them off my hand :)  Anyway, when I was feeding him yesterday, I was taking too long for him to get him another spoonful of his food.  Ronan casually reached over, picked up a puff, and put it in his mouth!  Then he proceeded to do this with the half dozen other puffs in front of him.  I know this doesn't seem like a big deal, but it really is.  It shows a lot of various motor skills (pincer grasp, picking food up and putting it in his mouth, chewing, and general coordination).  He also ate them without gagging, which is a genuine concern for us given that choking is the leading cause of death in CHARGErs after their first year.

Lastly, our little Ronan is babbling up a storm.  Not only are we getting the ma-ma-ma-ma and da-da-da-da's, but we are getting him stringing together different contestants and vowels.  It is truly amazing to listen to, considering his hearing loss.  This past week, he has also shown more of an interest in noisy toys.  Specifically, he wants to play with Sofie the Giraffe, and squeak it.  He has never played much with toys that only make noise, usually there has been a visual component.  I am actually more motivated now to repeat his ABAR test.  I'm curious with his increased interest in noisy toys if his hearing loss has changed.


On to my worries...  When Ronan was first born, I distinctly remember seeing this bluish tint above his upper lip.  I (and others) brought this up several times, only to get, oh it's normal, don't worry.  Later, we'd come to find out it was our first indication that Ronan's oxygen saturation ("sats") were not the normal upper 90s - 100% (not crying).  This was the first indication of his congenital heart defect.  Recently, Paul and I have noticed this bluish tint creeping back every once in awhile.  Teething can lower a child's sats, which Ronan is definitely going thru, but it is a worry nonetheless.  Paul and I are getting a pulse-ox monitor so we can establish a baseline.  Often with heart babies, a deviation from that baseline is the first indication that there could be an issue.  This can come before noticeable changes with behavior or coloring.  Our next cardiology appointment is in October.  We will be following up with Dr. A if we continue to see this color change.  Keep Ronan in your thoughts and prayers, please.  He has been making so many strides this past month or so, I would hate for him to have to take some steps back! 

Wednesday, August 15, 2012

Happy Birthday Ronan!

Dear Ronan,
Happy birthday to my little baby boy!  You have had quite a year, enduring more than most will ever know.  I've been thinking a lot about the days leading up to your birth.  About all the hopes and dreams that I and your dad had for you.  We wondered what you might be when you grew up.  What college you would attend.  What sports would would like to play, and how big of an Ohio State fan you would be (because you would have to at least like OSU a little!)  We wondered what traits you would get from each of us.  We had all these discussions about what type of parents we wanted to be.  We didn't want to worry with every fall.  We wanted to let you be a kid.  Most of all, we wanted you to be happy, and to know how much you are loved every second of every minute of every day.


I was almost a little sad when we went to the hospital.  For 9 months, you and I shared this special bond, and now I was sharing you with the world.  But I was so excited to meet you, and so was your dad.  And then you were shared, and our love was exponential.  You were this perfect baby boy.  I remember holding you thinking, I can't believe you are all ours.  I can't believe we get to take you home and love you forever.  And our hopes and dreams multiplied. 

Then, in an instant, our world seemed to stop.  You were whisked away from us, and off to the NICU.  Doctor after doctor came to see us, telling us all these scary things that no new parent should have to hear.  Our hopes and dreams changed to simply, please just let us take this little baby boy home.  Please let us care for him and love him.  Please let him live. 

From your first day, Ronan, you defied the odds.  Each time a doctor told us something, you showed us that you wouldn't be underestimated.  You would not be defined by a diagnosis.  If only we took those early signs to heart - as your parents we were very worried.  Our lives as we thought they would be were forever changed.  Rather than worrying about nursery decor and what types of bottles we were going to use, we were worried about finding the best specialists and what type of open heart surgery you would need.

Ronan, you inspire me.  We expected to be in the NICU for quite some time, but you sprung yourself in under a week.  You were supposed to have open heart surgery within a few days of your birth, but you went 6 weeks before needed it.  I could go on and on.  I will never take anything as set in stone anymore, I will always have hope because of you.  Our perspective on parenting is so much different now.  We are kinder, gentler souls, I believe.  Our marriage is so much stronger now too, because of you.  Your dad and I are the ultimate team, with you as our newest member.  We also hold the record of "fastest MD", earning our medical degrees from Google within weeks of you being born.  We now educate our doctors about you.

I know that in this next year Ronan, you will continue to amaze everyone around you.  Your development has literally exploded these last few weeks.  It is as if you have said, OK I am feeling much better now, now I can really start to do things.  Today someone half complained that you were babbling too much and that you were likely to become a politician.  Inside my pride nearly burst, I was thankful for what I consider to be a compliment considering your hearing loss.  I wanted to tell her all the things you had to do to be able to babble like that, but I just gave her a smile and told you to keep it up.

And now our hopes and dreams have changed again, little Ronan.  We see your determination, your will.  Our hopes and dreams for you are now coming back.  We wonder about your first day of preschool.  We wonder what activities you'll like in high school.  Will you play guitar like your daddy or piano like your momma?  Will you like to run like your momma and daddy?  Will you embrace our sunny, Santa Monica lifestyle or move away to New York City when you get the chance?  We feel like for the first time we can breath again.  It is scary for us to shift our focus, but it is time.  Just as you have grown, we need to too.

Keep it up, Ronan.  Fly high little boy.

Love, Momma and Daddy