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.