Monday, April 11, 2011

Another Bump in the Road...Kennedy's Weight Gain

Or maybe I should say her lack of weight gain.

By the time Kennedy was 6 days old, she was back to her birth weight.  I thought things were going great.  She continued to gain weight, albeit rather slowly.  We had an appointment with the Cardiologist when she was 3 1/2 weeks old.  I was told she only weighed 7lbs 4oz.  This made NO sense to me.  In fact, that would have meant she'd just been losing weight for the past two weeks!  Of course, the Cardiologist wanted me to start formula.  I just could NOT believe she had lost weight.  I wasn't going to start anything until I weighed her somewhere else, and researched my options.  While I do understand that they want my daughter bigger and stronger for surgery, I'm not a fan of pumping her full of formula to do it.   The next day I took Kennedy to the birth center to weigh her.  She was 7lbs 11oz.  Okay, there is NO way she was gained that much in one day.  The following day at the pediatrician's she weighed 7lbs 11.5oz.  Clearly the cardiologist's scale was wrong.  The pediatrician advised me to start adding formula to her bottles of breast milk, as the cardiologist had suggested.  He said that it would be the "easiest way."   However, in case you haven't figured out, I'm pretty much determined to avoid formula if at all possible.  I didn't become a parent so that I could take the "easy way."  If I HAD to introduce formula, I was even willing to go as far as making my own goat's milk formula.  I researched this option in depth.  There was one problem - it's apparently illegal to buy fresh goat's milk for human consumption in the state of Florida.  Call me unrealistic - but I went on a quest to find someone that had a goat.  Okay, okay...I know, unrealistic and a little crazy, but what can I say - I'm a mom and I'm willing to go to all lengths.  I even joked that I could sneak onto a nearby ranch and find a lactating goat - or perhaps I could place an ad on Craigslist for "quality goat's milk."
***Disclaimer - Please don't take any of my drastic attempts at obtaining goat's milk seriously.  I had to keep some sense of humor through all of this, or I would have probably had a breakdown. 

This is once again where I owe another huge thank you to Angie.  After a lot of research, we came up with a plan to enhance the caloric value of my breast milk.  After a Saturday afternoon at the natural food store, and a collection of protein powder and oils, I was headed home with a plan.  This just HAD to work.  I would begin adding oils to as many foods as I could come up with.  I would drink protein shakes once or twice a day.  It took some experimenting, and some getting used to.  Marlon could not believe the crazy combination of things I was putting together - and actually drinking!  But I was determined to make this work.  I was not ready to give up my fight to have my baby formula free.

The good news - a week later, Kennedy had gained weight!  The Cardiologist was thrilled!  The Pediatrician was thrilled!  I felt wonderful - I had once again won another battle against formula.  Kennedy was started on Lasix that week.  They considered her to be in "heart failure."  Those are two scary words for a mom to hear when it comes to talking about your 5 week old baby.  But the Lasix would help get us through until the surgery.  Because of her slow weight gain, I was still waking her up at night to eat.  Kennedy takes her sleeping very seriously, and this was a nearly impossible task.  I spent night after night taking her clothes off, rubbing a wet cloth over her feet and hands, trying to get her to wake up to eat.  It was exhausting.  I felt like the only mother to be sleep deprived because I was trying to wake the baby.  Finally, the day came where the pediatrician gave us the "okay" to stop waking her!!!  We were finally able to go a full night with out me setting my alarm for six different times, trying to feed her.  Not only did I appreciate a full night of sleep, or at least waking up to a hungry baby, I'm pretty sure my husband appreciated the fact that I was no longer going to all lengths to wake a sleeping baby, followed by a mini breakdown that she would never gain weight (all at 2am...and 3am...and usually 4am.)  I'm sure this made for better days at work for him (sorry honey.)

We continued to gain weight reasonably well for the next two weeks.  The Cardiologist was looking for her to gain an ounce a day.  By the time we went for our 2 week follow up, the nurse announced we had gained only 4oz.  Excuse me?  I had taken her to the birth center just two days prior and she had gained a total of 10oz. in two weeks.  How could this be happening AGAIN??  I questioned the accuracy of the scale and was told that if I could prove she weighed differently somewhere else, they would have their scale calibrated!  I just kept thinking someone needed to go back to school for "Weights and Measures 101."  Of course, the "F" word came out of the Cardiologist's mouth again.  Once again, I was NOT going to give her formula until I weighed her elsewhere.  We finished at the Cardiologist, and I headed straight to the birth center.  Where, I of course found her to weigh  8lbs. 9oz.  That would mean an 11oz gain in 14 days.  So I began another battle with the Cardiologist's office.  I even sent them proof of her weight from the birth center.  I threatened to find a new doctor, to have the surgery performed elsewhere.  If I couldn't trust them to accurately weigh my baby, how could I trust them to perform open heart surgery.  This warranted a call back from the doctor as well.  She was forced to admit that she was equally confused by the variation in scales.  I insisted that there was such a small gap in what they wanted her to gain, versus what she was gaining - that I wasn't comfortable introducing formula.  I demanded to know alternatives.  There's plenty of research out there showing that it is just as effective to use oils to encourage weight gain.  She asked me to weigh Kennedy at the pediatrician the next day, and get back to her - and we would further discuss it.  Shortly after, I got another call from her.  (Perhaps she decided it would look bad to lose an open heart surgery patient over a weight issue.)  She explained that she discovered the nurse wasn't completing the conversion accurately.  That Kennedy did in fact weigh 8lbs. 8oz. in their office!  Once again - mom's not crazy!  So Kennedy was gaining weight.  Just not QUITE what they wanted.  She agreed to a plan to begin adding oil to Kennedy's bottles, in order to boost the number of calories that she's getting.  Another struggle against formula has been beat- BARELY!

The hardest part of this struggle is constantly hearing that if she were a "normal healthy baby" this would be completely acceptable.  A parent wants nothing more than to think she has a "normal healthy baby."  It's been very hard for me to accept that statement.  In fact, I still don't think I have.  I know Kennedy has a heart defect, and that her heart is working a lot harder than other babies.  I know that she has Down Syndrome.  But to me, none of this qualifies her as abnormal or unhealthy.  I cringe every time I hear that she's "not a normal healthy baby."  

This whole situation has made me a little obsessive about her weight.  I try not to stress, but it's pretty much impossible.  Sometimes I feel like it consumes me.  I find myself taking her to the birth center to weigh her twice a week.  I hate that it consumes me 24 hours a day, 7 days a week.  I spend soo much time worrying about her weight, making sure she's effectively nursing, making sure she's getting enough bottles - and the right amount of oil.  I even downloaded an iPhone app to track her feedings.  I never imagined I would be doing this.  What ever happened to the idea of "feeding on demand?"  This wasn't what my husband or I had planned.  This isn't how it was supposed to be.  But again, another realization, things aren't what we expected.  This is just another area we need to make adjustments in our "plan." 

Stay tuned....I'm sure there will be more posts to follow on this topic.  


  1. Jen-

    I think this blog is absolutely amazing and what you are doing to prove everyone wrong makes it all the better!!! Kennedy is a beautiful little girl and a miracle in every way!!! Keep up the great work, thanks for sharing your story and looking forward to reading more and seeing more beautiful pics!

  2. we had to increase calories to avoid a feeding tube... I waited and researched as long as I could to avoid added formula, but in the end we had to mix it in the bm for a month before her surgery. BM is superior, and formula can cause minor health problems, but in the end your goal is to keep your baby alive. ( She hated the formula, broke out in excema, and thankfully we were able to stop adding it after a month. 8 months and still bf strong!)