A Bittersweet “Last Time”

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A poem called “The Last Time” has shown up in my Facebook newsfeed several times over the past couple of weeks.  Have you seen it?  It’s one of those poems written to make parents weep. Seriously. It’s all about how your child will grow up and how there will be a last time for all of the things that you take for granted (wiping a dirty face, holding a hand to cross the street, etc.).  It’s actually quite beautiful and one of those reminders that we need as we struggle with the parental hassles that make up our daily to-do lists. If you need a good cry, you can read it here, but have your tissues ready.

I’ve been thinking about this poem a lot today as we are in the midst of a “last time.”  Today will likely be E’s last full day of Neocate Junior.  And quite frankly, I’m a little emotional about it.  (Jonathan, stop rolling your eyes.)

It never occurred to me that a baby formula would become such a part of our lives and now that we are on the cusp of moving on I don’t really know how to feel.

photo 2                                                              Last 22 oz pitcher of Neocate!

Let me explain…

Before E was born I knew I wanted to breastfeed.  I had read all about the benefits of nursing and wanted to provide them for my son.  You know me, I read a bunch of books and articles and even dragged my wonderfully supportive husband to a Saturday morning workshop.  I was ready.  And apparently so was E.  He latched on immediately in the delivery room and I breathed a sigh of relief that nursing was going to work for us.

That was last time that feeding my infant was easy.

Somehow we started having problems with nursing and E lost a significant amount of weight in the hospital.  I could tell that it was serious because the attending pediatrician (who actually happened to be a neonatologist – the kind of doctor who has seen very sick newborns) wouldn’t discharge E until we had made an appointment to see his pediatrician the following day.   At that very first pediatrician appointment, the doctor told me that I had to start supplementing with formula to get his weight back up.  I had read that this was a bad idea and looking back I probably should have tried to nurse for a little longer, but I was scared.  Here I was sitting in the pediatrician’s office with this new tiny person who was completely reliant on ME.  A tiny person who wasn’t even supposed to be here for another two weeks!  I was exhausted and shell-shocked.  I felt like I didn’t know anything so I did what I was told.

And so that was the beginning of our formula story.  I’ve written about this before so I won’t bore you with the details of visits to lactation consultants and pediatricians and falling off of growth charts and trying various formulas to get my child to stop vomiting and start growing.

Shortly after E turned 4 months old we found ourselves sitting in an allergist’s office.  When we got to that appointment we were exhausted and bewildered.  We had this adorable baby who was finally growing but continued to spit up constantly.  He always seemed uncomfortable and didn’t sleep (so neither did we).  I remember the comforting relief as the allergist listened to us, validated our concerns, and agreed that something was wrong.  I remember the confusion when his scratch test was positive for milk and the fear and disbelief as we were trained on how to use an epipen.  And I remember the hope that I felt when we were presented with Neocate, a hypoallergenic amino acid formula.

I felt confident that Neocate was the answer.  This can of powder was going to nourish our son without poisoning him the way everything else had.

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Loving his cup of Neocate at about 9 months

Well, it took several weeks for the allergens to work their way out of E’s system and in the meantime we actually added more!  But eventually he started to thrive on Neocate.  As we learned more about his reactions, eliminated his allergens, and found out that he had FPIES, we started to feel more confident in our ability to safely nourish our little boy, thanks to Neocate.

When E turned one, as most families were switching over from formula or breast milk to whole milk, we switched from Neocate Infant to Neocate Junior.  His diet was still very limited and his nutritionist explained to us that while non-dairy milks have high levels of calcium, there was no substitute for the protein and fat in cow’s or soy milk.  So we continued to give E Neocate several times a day.  He looked forward to his “cups.”  In fact, when he was 16 months old and had a stomach bug we fed him only clear liquid for a day.  He practically jumped for joy when we gave him a “cup” of Neocate the next morning and he said “yum” for the first time 🙂  This formula has been his comfort food, the first food that didn’t make him sick and the stimulus that finally helped him to grow into the rambunctious boy that he is today.

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Ok, I may be romanticizing Neocate a little.  There were definitely some things about it that we didn’t love.  For the past two years, every morning (before coffee) we have to pull out the scale, and measure, scoop by scoop, the amount of powdered Neocate for the day.  This results in various degrees of powdery mess, depending on how tired we were or how (im)patient E was.  Then each night we had to hand-wash the container that we mixed it in so that it was ready to go for the next day.

Relying on Neocate, especially when it was E’s only form of nutrition, was sometimes stressful.  We always had to have enough of it with us.  You can’t just run into a grocery store and pick some up if you forget it.  We never left home with an “emergency cup,” enough powder to make one extra cup if something happened and we found ourselves needing it.  Oh, and it wasn’t cheap!  At one point E was going through about two cases every three weeks.  These two cases had a $255 price tag that we paid out-of-pocket for several months.  After much stress and fights with our insurance company, they finally agreed to cover it – but I’m pretty sure that we grew several gray hairs in the process.  Neocate wasn’t always easy or perfect, it has been our constant. And I really believe that it saved our little boy.

Yesterday, we returned to the allergist.  This appointment was so completely different from that first time.  Instead of carrying our thin, tired, spit-up soaked infant into the office like zombies; our chubby little boy in his clean button-down shirt led the way to the exam room.   The answer to the nurse’s “how is everybody doing?” was an enthusiastic “great!”  We didn’t have any reactions to report since our last visit in April.  We were continuing to successfully add fruits, vegetables, nuts, and fish to E’s diet.  We didn’t really have any concerns.

Everyone was pleased to see how well E was doing.  The kid sure knows how to work a room, too!  He had all of the staff ogling over him in minutes.  He had IgE skin tests for all of his allergens and they were all negative! And so the plan moving forward is to start to challenge the allergens that he’s been avoiding for over a year (more on that later).  Then the doctor said it – Neocate Junior is no longer necessary.  

E can now safely drink almond milk and cashew milk.  We are almost finished a hemp milk trial, too.  The doctor is confident that with his diverse diet and these milk-alternatives, he doesn’t need the Neocate.

IMG_3474Nothing like hanging out at Starbucks with a good book and some almond milk

It’s definitely a relief.  It’s amazing that after two years, we are finally off of formula.  But I can’t help to be a little bit sad that it means my baby is growing up.  Sure, it’s been over a year since he has had a bottle, but something about the formula allowed him to stay my baby.  I guess I am feeling the same way all parents feel at all milestones, it’s exciting to watch our children conquer another new skill in life, but sad that we have to experience another last time.  I think I also feel kind of like my therapy clients feel at their final session.  Neocate has been like therapist to us.  It has guided us through some really tough times.  It helped us pick up the pieces when we were at our lowest point.  It gave E the nutrition that he needed to grow and the ability to branch out and try new foods.  It has been our support for so long.  But, as I always tell my clients, the goal of therapy is to provide them with what they need so that they can move forward on their own, without the need for a therapist.  And that is what Neocate has done for E  (and for me and Jonathan, too).

We still have some of our Neocate stash so I think we will slowly work it out of his diet over the next couple of days.  Honestly, this is probably more for me than it is for him.  As much as he loves his “cup” I think he’s just as happy when it has almond milk or hemp milk in it.  In fact, E can’t seem to get enough hemp milk! I can’t predict if he will miss his Neocate or not.  He only stared at me blankly when I tried to explain the significance of his last full day of Neocate.  I think I’ll miss it for now but someday I won’t even be able to remember why it felt sad to me to leave it behind.

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Of course, part of my baby growing up, also means that he is getting closer to outgrowing his allergies!  We were told from day 1 that he will likely outgrow the allergies by age 3 (though the current research isn’t as optimistic).  That is officially less than a year away now!  We have scheduled his hospital-based challenges for milk, rice, and oat in November and December.  It’s possible that by end of 2014 he will be able to safely eat these three foods that we have been avoiding for most of his life! I can’t even wrap my head around that.  I’m trying not to get my hopes up too high but as I made my last 22 ounce pitcher of Neocate this morning I couldn’t help to wonder if this is the beginning of our FPIES “last times.”  And the beginning of so many firsts!

 

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“Cheers!”
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3 thoughts on “A Bittersweet “Last Time”

  1. Pingback: Post-Neocate News | F U FPIES

  2. Pingback: Got (Non-Dairy) Milk? | F U FPIES

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