Our Breastfeeding Story

My son's birthday was last week, which has led me to be ultra-emotional and reflective.  In particular, I've been thinking about how amazing he is and all that we've overcome. 

During my pregnancy, my son was diagnosed with hypoplastic left heart syndrome.  Basically, the left side of his heart did not fully develop and could not pump oxygenated blood to his body.  He would need to undergo 3 surgeries during his first two years of life.  Even if all surgeries went well, it would not guarantee that he would never need a heart transplant.  We were advised to terminate at one of the hospitals we went to, as the future would be bleak.  This was not an option.  We decided pretty quickly to switch to Children's Hospital, as they were #1 in the country for cardiology and got a better outlook.  Needless to say, the rest of the pregnancy was a miserable blur and after four months full of tests, crying, and fear we had our beautiful baby.

One of the difficulties we were forewarned about, in addition to all the terrifying medical stuff surrounding the actual surgeries, were the feeding difficulties that would follow.  He would not be able to nurse or bottle-feed before his first surgery, which was scheduled for his 5th day of life. In the meanwhile, he was encouraged to suck a pacifier.  It's funny how often they will warn against pacifiers if you hope to breastfeed.  In our case, they were our only hope that he would  keep his suck reflex strong enough to feed later.

His first surgery went amazingly well and he was extubated at 24 hours post-op!  He was a rock star in the intensive care unit.  Feeds were started via tube.  I was very fortunate to have a nice stash of breast milk for him.  Mommy had been busy pumping away.  So busy that at some point they asked me to stop bringing in milk.  I was taking up the whole freezer!  I could end world hunger, they joked.

The big day was 2 days later, when he was moved to the regular floor and was allowed to take a bottle.  I was so excited for his first feeding.  Turns out, it was uneventful.  The feeling of milk sliding down his throat and a full stomach was not appealing to him.  All the following feedings were a battle.  The more he fought it, the more weight he lost.  Oh that's the other thing about babies with hlhs--they burn calories much faster due to the extra work their heart is doing.  So they fortified my milk with formula to make it 28kcal (normal breast milk is 20kcal).  Well this was a battle for me, because it made him also vomit every feed.  I insisted he'd be able to handle breast milk without the additives.  I also insisted that shoving the feeds he wouldn't drink down a feeding tube was not helping.  Words lost in the wind.  They were the experts, they knew how to do this.

I shouldn't really say I insisted.  The truth is that I was tired, scared, and dealing with feelings of insecurity.  My husband was my biggest supporter and took over most of the battles.  I was grateful to have someone that shared my convictions about breastfeeding and had the strength to fight for it.  I worried he would never take the bottle and never be allowed to nurse.  Nursing was troublesome for the medical staff because they couldn't measure it.  They also feared it would consume too much energy.  So they hesitantly let me nurse once or twice a day.  It wasn't going very well anyways.  I started realizing that my dream of breast feeding my last baby would be near impossible. 

Finally, the 5th day after surgery we had a victory.  Several, actually.  They spun my milk in this fancy machine and figured out it was actually 35kcal.  They were so starstruck, they did it again.  Yep, 35.  No more supplementing.  Not surprising to us, he stopped vomiting every feed.  They took out the tube and he  started downing bottles with ease. 

At 7 days post op, we were ready to really work on breastfeeding.  The LC was very helpful.  The nurses seemed more annoyed at my insistence, but I was allowed to breastfeed a couple times a day.  And he did beautifully.  I think it was partially the fact that I nursed two babies already and partially the fact that I am a stubborn cow that refuses to give up.  To everyone's astonishment, we did it--we were nursing every other feed by the time we went home.  We had spent 20 days in the hospital.  I was told during my pregnancy to expect 4-6 weeks.  My boy defied the odds.  And he continues to do so.

Two weeks after we were home, I started nursing full-time.  He amazed everyone with his growth.  And I amazed them with the mere fact that I was nursing an hlhs baby.  Apparently we're one of the handful.  I'm proud and happy to prove that it can be done, but mostly I'm grateful.  Grateful for the gift I am able to give him.   Through my milk, he is able to boost his immunities.  I've nursed him through RSV, bacteremia, and his second open-heart surgery at 4 months.

I am grateful that through a period of uncertainty, I can be sure that I am giving him all he needs.  And believe me, when you're in the hospital repeatedly, there is nothing more comforting than nursing your baby to ease the pain. Most of all, I am grateful for the gift of closeness that nursing brings us.  As I snuggle up my heart baby 12 months later, I have no idea what the future will bring, but I know for certain, we've been nothing short of blessed.