Tuesday, March 8, 2011

To Tube or not to Tube?

I wish I'd been journaling this entire experience of becoming Cora's parent.  I know that becoming a parent is probably one of the most transforming experiences in life.  And I know that is likely the case for everyone.  But, my former life and former self seems so distant right now.  Life has been reduced to the simplest of moments, the simplest of efforts, yet in ways it has never been so hard.  We are blessed to have found a sleep schedule that for the most part keeps us rested, and have a great system at home.  Our routines surround the frequent task of feeding our little Bean.  And oh what a task it is.  In between, the challenge of completing the other simple tasks:  keeping the house and kitchen clean;  preparing food (not quite as varied as before); processing milk using our recently acquired lacto-engineering skills to optimize Cora's calories and use my abundant milk supply; planning for and getting to all her doctor's appointments.  But these simple things don't always feel so simple.

And, oh the decisions.  Each decision we make seems all-consuming.  Starting new medications, having to switch pediatricians since one of her medications is so costly and couldn't be purchased by our former doctor, trying different formulas to fortify the breastmilk and trying to determine to which one she responds better.  Constantly adjusting her feeding schedule and our techniques to try to get her to eat better.

And in between and during all of this, processing all the information, thoughts and emotions that come with her arrival into our lives.  I keep reminding myself that we are dealing with many of the things that all parents face.  I spend a great deal of time reading and sharing information with other parents who are in similar situations.  I've joined an online forum for parents of kids with Down syndrome that is incredibly insightful, helpful and validating.  I've been following the impressive blogs of a number of mamas out there with beautiful and amazing babies with Ds, and it makes me happy, and hopeful.  But sometimes it poses new concerns and worries that I hadn't thought of yet.  And it helps validate some of the feelings that I have had.  I am so lucky that Cora is such a lovable little soul.  It makes it possible to deal with all we've been given.  But sometimes I can start to feel sorry for myself and sorry for Cora and have feelings that are difficult to acknowledge.  Knowing and reading about others' similar thoughts and experiences makes me realize that I am not alone.  I still have my moments of sadness, and of course, of frustration, stress and anxiety.  But I am lucky to have this building network of support, and of course, this beautiful little person who keeps me motivated, who makes me smile, who makes me want to do everything all for her.

Especially frustrating of late has been Cora's feeding habits.  We were thrilled when she got off her NG tube shortly after coming home from the NICU.  But in the last couple of weeks, her eating has deteriorated.  Incredibly, she has continued to gain weight. I attribute this to the extra calories in her enriched and fortified breastmilk.  But her numbers have dropped.  Her vomiting has gotten pretty frequent and looks so uncomfortable and is difficult to watch.  We've tried many different things.  She's on medication to treat reflux (but unfortunately doesn't always keep it down).  We're trying to determine the best type of formula to use to fortify her milk.  But feeding her lately is the daunting experience of either trying to wake her up or calm her down enough to eat.  And it doesn't always work.  Her "horsing" has become pretty disturbing at times.  She seems to be seriously uncomfortable.  And we have become concerned that our continued efforts to get her to eat even when she seems to be done may lead to (if they're not already leading to) an aversion to eating.  In the long run, this is the most concerning to me. 

So we've been talking about putting back the NG tube.  And talking.  And talking.  We'll decide one thing, then change our minds when she has a relatively successful feed.  But she's overall not getting much better.  And it seems wrong to regress, to throw in the towel on this.  We've been told that she may regress in the weeks before her surgery, and that we should be prepared for that.  Her cardiologist even says that if her feeding or weight gain slows much it will be a reason to perform her surgery earlier than anticipated.  But it doesn't seem as though her other heart-related symptoms are worsening.  So it's hard to know if her eating is related to that.  How does a parent really tell?  And the fact that she has been gaining weight makes making this decision not nearly as cut and dry and we'd like it to be.

But I think we have come to the decision that we need to make it easier for her now.  That if we make an effort to feed her and she just doesn't want to take the last 20 mLs we can give the girl a break and put it in the tube.  That giving in on this doesn't mean that we have failed.  That trying to keep her interested in feeding and avoid creating an aversion in the long run may be more important to her future eating skills.

In the grand scheme of things, a feeding tube doesn't have to be so dramatic.  I tell myself it can be one step on the way, one way to help her get to where she needs to go.  But we know it's irritating to her, and that she'll pull it out again, and that it's so much nicer to see her sweet little face without a tube and a piece of tape.   I guess all we can do is continue to make one decision at a time, and try to help her in the best way we can.

And we can pray that once her surgery is done and she begins to heal, her progress will skyrocket and she will feed well, and we can move on.  But I know that moving on doesn't mean that there won't constantly be new challenges.  Cora will be faced with challenges that we never expected we'd be dealing with.  But hopefully we'll be able to take these things as they come.  And hopefully we'll make the right decisions, at least some of the time.


  1. Reflux is very difficult and affects so many parents and kids. Finding the right med and dose takes time (sometimes going through three or four meds) so I encourage you to ask about trying others. Why not a feeding tube until the surgery? From my perspective you've had tremendous feeding success so far and a lot of babies her age drop the amount they eat when more calories are first introduced (and Of course you want to see her gorgeous face unfettered but she can still bottle feed and practice nursing but with less of the worry. xoxo

  2. Wow, you and your sweet family are dealing with so much. It sounds like you are being so mindful of Cora's experience. I hope you and Nick are also taking good care of yourselves and each other. Even parenting a healthy baby can really take a toll, so be sure you each get some breaks to be away from home as well as getting deep rest. Cora is a lucky little angel to have landed in your lives. You are in my daily thoughts, Leah, and I know you are doing your best. Go for the tube, and don't let yourself think of it as a failure, more as a tool to get to a larger goal.
    When is surgery, and what will that entail?
    We had some very disconcerting test results that got us quite worried about congenital heart issues for our little squirt, and even though we have now been assured that s/he has a fully functional and proportionate heart, I can't help the wondering. I love you, sweet Leah, and send strength and clarity your way.
    Peace be with you.

  3. You are doing great leah. Not only is this your first which is daunting and scarry in itself but little cora has some extra challenges...please don't be hard on yourself cause I know you are doing an amazing job...hopefully you are finding great doctors and nurses that can guide and advocate as well as experienced parents who have gone through similar experiences...I'm proud of you and look up to you for your strength and courage!!! love and thoughts often

  4. We are currently dealing with this issue now. I'm fortunate that my 8 week old will nurse now, something she wouldn't do until four weeks ago. But when we went to our heart doctor yesterday she had gained quite a bit of weight, but only 4 oz from her birth weight. Not enough he told us. Now we are starting the medication rounds to help her gain weight. We were already suplimenting with formula (which she will only take sometimes, and only from mommy) but its not enough. Its hard fighting a 2 month old to try and get her to eat, especiayl since since I can't just say, she'll eat when she's hungry like I could with my other three children. Its always an adventure, isn't it.


Thank you for sharing your thoughts with me!