Hand to Hold's Official Blog: Written by Parents for Parents

Breastfeeding…2.0?

My daughter was born in 2006 with MANY medical issues, including no gag, suck or swallow.  Not being able to use her mouth to eat, she had a gtube placed shortly after she was born.  Although I was never able to breast feed in the traditional sense, I knew how beneficial breast milk can be so I pumped my little heart out.  Sadly, it just never worked for me.

We lived outside Los Angeles at the time and they did have milk banks.  The way that the donor milk topic was approached did not make it seem like a good idea.  We were also told she would be on formula for a long period (most likely her entire life) and we may as well go ahead and get used to it.  Very early on (less than 1 month) we made the switch to complete formula nutrition.

I was sad about not being able to provide breast milk.  We had so many other issues to deal with that I didn’t have much time to focus on the sadness.  Instead I focused on everything else and got used to formula.  Casey turned 6 in April and has been on one form of formula or another the entire time.

We deal with ongoing GI issues everyday.  Casey has a very sensitive tummy and can not process a lot of formulas.  We have been on the same toddler formula for years.  Recently the formula changed packaging.  We were told by our DME (durable medical equipment provider), dietitian and gastroenterologist that the only change was the package- the formula had not changed.  Long story short, it changed.  We spend many weeks trying to get answers, and finally had the production company confirm that yes, the Vitamin D and Calcium had not only increase, but the method of being added had changed.  They did not think it was a major change and therefor decided it wasn’t worth telling their users.  If my child didn’t have a sensitive GI, maybe it would not have mattered, for her it mattered a lot.

We collected as much of a surplus of the old version as possible and have been trying new formula’s over the past couple of weeks.  We ran out of our surplus, and still do not have the answer.  One of the formulas we used was an elemental formula.  Quickly we learned that Casey has a horrible allergy to one of the enzymes in elemental formula.  She was given about 100cc (just over 3 ounces – less than half a can of soda) over the course of about 4 hours.  This started a chain of events that we have been battling to recover for over a week.

Casey at the movies w/Mom (left) and her amazing nurse (right)

One of Casey’s nurses recently had a baby.  She and I were talking about all of the issues and how I just don’t know what formula to try next.  She said, kind of jokingly, “How about breast milk?”

At first we both just laughed.  After a couple of minutes though, we realized it wasn’t a half bad idea.  She can’t digest the heavier formulas, and the enzyme is the easier formulas cause a horrible reaction – Why not breast milk?

She is very blessed to be able to pump more than her baby needs, and offered some of her extra to Casey.  I contacted Casey’s pediatrician to get her thoughts.  She thought it sounded like a good idea too.  So here we are, 6 years later, and Casey is eating breast milk.  The best part- she’s doing really well with it.  Sometimes you have to think out of the box.  I never would have thought to try this.  I am so glad that her nurse suggested it.  We are using the breast milk as a bridge now.  We will mix it with other formulas (half and half) over the next few days/weeks until we find one that Casey can handle.  Then we will gradually ween breast milk and move back to full formula.

I thought Casey’s breast feeding story ended a long time ago.  Who would have guessed we’d have another chapter 6 years later?  We’re very lucky to have such amazing, loving nurses as well.  Her nurses really will do just about ANYTHING for her <3

Marty Barnes About Marty Barnes

Marty Barnes (TX) is mother to Casey, a preemie born at 36 weeks.  Casey suffered trauma during delivery which resulted in brain damage, and she has multiple medical needs as a result, including a life-sustaining feeding tube. Marty established the CLU Campaign, a grassroots inclusion project, along with her daughter’s site which chronicles their journey. Marty is an active community volunteer and currently gives her time to Hand to Hold, Mommies of Miracles, and Texas Parent to Parent.

Comments

  1. Christina Dean says:

    Oh, what an uplifting story!! Thank you for sharing!

  2. I’m so glad you found nourishment for your little girl after so many trials, and that you could give her someone so wonderful to provide her with it 🙂

  3. Kate McQueen says:

    This is amazing! I was lucky enough to have a great supply and be able to exclusively pump for the first year after my son’s perinatal stroke. I have always strongly believed that it helped him to a miraculous level even before I recently learned of the presence of stem cells in breastmilk. I hope this becomes a wide spread practice and donors become more abundant!

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