On the Verge of a Nervous Breakdown

Last week was so rough it’s taken me over a week to deal with all the issues and get my head and my heart free, clear, and ready to move forward.  It all began at our 6 month visit with our pediatrician.  He looked at Aleck and noted how full his cheeks were looking, how round his belly had gotten, and I thought the check up was going well.  After check-ups the doc likes to meet with his families in his office to go over any questions they might have, talk about things to look out for, and also address any issues a family might be having.  Well, I felt pretty side swiped when he recommended exploring the idea of an NJ Tube, a feeding tube that would go down his nose and into his small bowel that he could wear while he slept so that he could keep getting the nutrients and food he needed in a way that wouldn’t add the stress of waking him up during the night for multiple feedings.  Clearly I know Aleck is small and if you’ve been following my blog you’ll know that I’ve been working my tail off to figure out how to get more food down his gullet.  But this felt like such a hopeless idea, like something a baby who isn’t healthy would need.  Yeah he has his physical disability but he’s such a happy guy and we’ve been making so much progress over the last three months, this just felt like the biggest step backwards, and in turn it made me feel like I’m letting Aleck down once again.  He explained to me that Aleck’s height is in the 10%, so he’s no basketball player, but he weighs the amount of a 2 month old which I had already figured out when I posted that picture of him on the scale on Facebook.  A friend even commented that he was the weight of her two month old baby girl.  Packing the pounds on Aleck has been an issue we’ve been tackling for a long time and even though he’s taken really well to solid foods I know they don’t have the vitamins, nutrients or the calorie content of his formula.  This part of the conversation ended with an agreement to look into some calorie boosters for Aleck (Weightgain 3000-BEEFCAKE) and then re-evaluating the situation in a month.

As I was picking myself off the doctor’s office floor he then decided that we needed to talk about Aleck’s ability to communicate, how his speech was developing.  What sounds is he making, is he babbling yet, etc.  But here’s what he said, “We need to look at him as if he’s a quadriplegic, therefore his ability to communicate is going to be even more important than that of a regular baby.”  Now, I’m sure this quote isn’t perfect because if you think I really heard ANYTHING after he said, “quadriplegic” you’ve got to be kidding.  It took all my self-control to hold it together.  I think I mumbled that he’s not going to be a “quadriplegic” and the doctor responded, but it’s hard to get that strong conviction in your voice when you are desperately trying to keep it together.  He went on to talk about getting his speech tested (been there, done that, didn’t tell me anything yet he’s too young) and when we should start worrying about him babbling (kids often start babbling between the ages of 6 and 10 months…I think we have plenty of time).  Aleck is very communicative and does a great job of letting us know when he’s tired, when he’s hungry, when he’s uncomfortable (sometimes I put the splints on too tight) but he can even tell you what toy he wants to play with and he lights up when I pull Goodnight Moon off the shelves.  Communication is ONE (seriously, only one) thing we aren’t worried about.

Needless to say I was hysterical when I left the doctor’s office.  I found the right person to call at that moment (Thanks Heidi for talking me off the ledge), went home and sank into my couch for the rest of the day mulling it all over.  Aleck has trouble finishing his bottles, he always has, and I’m still offering the same amount in his bottles as I was offering him in February.  I know that’s a huge problem.  So let’s retrace.  First it was straight formula followed by aspirating and screaming when burping.  Then we added in the rice cereal to thicken.  He was taking those OK but eventually he got really backed up and would literally look at the bottle as if I was offering him poison before screaming his little face off.  Then we went to oatmeal, 2 tblsps, the same amount I was using of the rice cereal but I noticed right away that we had to switch nipples and therefore bottles to get a large enough hole for that thickened feed to pass through.  It worked at first but eventually he wasn’t finishing his bottles, leaving almost 2 oz per bottle (when you are only giving him 6 that’s a lot of formula) but at least he wasn’t screaming anymore.  So now what, where do we go from here?  I’ve been adding formula to his solids as a way to squeeze in more here and there, but what else can we do to get his formula intake up?  Is a feeding tube really necessary and how can we avoid having to go through all of this?

I spoke with the people I see the most, my OT, my PT, and made a 911 call to my nutritionist.  My OT has been a huge help through all of this.  She comes twice a week so by default she’s often the first person I see besides Craig so I bounce a lot off of her.  Plus I figure she sees a lot of special needs kids and works with a lot of babies so she may have insight into my dilemma of the moment, and she usually does.  Her reaction was that he’s clearly not an unhappy baby and if he was underfed then he would be able to focus like he does for a full hour of therapy and he wouldn’t be able to deal with all the stretching and splinting.  Regularly she sees very unhappy babies who are having eating issues and therefore aren’t successful in their therapies, but Aleck has been the absolute definition of success.  My nutritionist talked to the ped for us and told him how far we’ve come since she first started working with us and championed on our behalf to take the NJ tube off the table.  She’s recommending we add olive oil to our food, and let’s face it pureed pees and carrots with olive oil is waaaaay tastier anyway, Aleck is already loving it.  But what about the bottle problem.  Do we have to revisit the bottles again?  Do I need to get those Tommee Tippees back from Lavi and Isabella?  How can we get him to take more formula?

Let’s face it.  I can see as many doctors as I want, talk to as many therapists, bug my nutritionist, but at the end of the day it’s up to Craig and I to figure out what we want to do with Aleck and how to solve a lot of his issues.  We had already decided that we would fight tooth and nail against the NJ tube.  Then we talked about waking him up for additional feeds.  We used to wake him up at 10:30pm for a final feed and that was a total struggle.  He hated being woken up (that’s my boy), and at most would take 3 oz of formula.  Suggestions were made from others who have struggled with their babies and weight gain to wake him up multiple times, every 3 hours to feed.  That just sounded like pure hell, or life with a newborn, something I dread going back to.  I mean, if he wakes up crying for food, I’m going to give it to him but he hasn’t done that for months.  So let’s say we do start waking him up, where does that get us.  He’s going to be cranky and unhappy because he’s not sleeping well so his therapies won’t be as effective, and we are going to be cranky and unhappy because we aren’t sleeping well.  After a second thought middle of the night feedings sounded like a lose/lose.  Where does that leave us?  What else can we do?

I’ll tell you exactly what we can do, we can take the oatmeal out of the bottle.  If his tummy isn’t getting full of oatmeal he’ll be more likely to finish his formula, or at least that’s what I’m hoping.  Let’s just say that today he’s already finished to completion two of his bottles, he’s not screaming, he’s not aspirating.  Combining that with the olive oil and a regular schedule of solids I’m hoping that in a month we can have a baby who looks like who ate baby Aleck 😉  The next step after that will be to add the Duo Cal to his diet, something I’d like to put off for a little.  I’m afraid of hitting his system with too much as once and want to see how we do with all things (mostly) natural.

As for the comment about treating him like he’s going to be a “Quadriplegic” I have to blame myself a little bit for his comment.  We’ve known for a while that Aleck’s chances of walking are really good.  This was shown pretty clearly when the hip splint worked and when he amazed even the dr’s with the correction of his club foot.  When we went to Shriner’s the dr’s there echoed those sentiments telling us flat out that he will most likely be able to walk without any assistance.  The ped and I had a heart to heart yesterday and I told him about the comments from the dr’s at Shriners and we talked about his inflexibility in his lower half.  I mean, if you’d spent half of your life strapped into a huge plastic splint that kept one leg out and to the side, you’d be pretty stiff yourself.

And in the middle of all of this chaos Aleck had the stomach flu last week, threw up half his body weight, and finished it all off with a bought of pink eye.  We are all recovering nicely and are looking forward to our next weigh in on May 15th!!

oxo

Lynnie, Craig & Aleck