Monday, February 7, 2011

Part II: Alisa's Story - Sweet Baby Luke - Born with a Cleft Lip and Palate

As promised, here is Alisa's story of pumping for Luke, her third baby, born with a cleft palate and lip.  Yes, this is the Alisa -- the one that started my road to natural birth, my dear friend for almost 16 years now.  This was a crazy time in her life.  It's one thing to read it and another to experience it.  I hope you enjoy her story and gain strength from her words.  I'm certain some of you have endured, and are enduring, similar trials of providing breast milk for your babies.  You are not alone.  Alisa, thank you so much for sharing your story here.

"I sat on the ultrasound table willing my eyes to not see what was there. Or not there. Before the tech could say, "Did you say your husband had a cleft lip?" I knew. I saw the dark space between my baby's top lip. A quick reply to the tech, "Yes" and he confirmed what I already knew; my third child would be born with a cleft lip and palate.

I gathered my thoughts and two children and went to the car to call my husband. As I made the call to Jay, who was working out of state at the time, I made a decision; This baby would not be treated any differently. I would not find out if this baby was going to be a boy or a girl. I would still have an unmedicated birth. This baby would still receive breast milk.

I had nursed my other babies for as long as they would. 11 months and 15 1/2 months. I would give this baby the same. For as long as I could.

I started reading about breastfeeding a baby with a cleft lip/palate. I knew it would be a difficult thing to do alone. After a good amount of research I realized I would probably need to pump to help things along. I taught myself about pumps and what I would need to do to build up a supply of breast milk. I will be forever thankful to the woman who gave me a high quality pump. I assembled my kit and waited for my baby to be born.

We welcomed our big healthy baby boy of 9 lbs 10 ounces! … oohing and ahhing over him and announcing his name immediately, “Luke.” When our pediatrician came to check on us he stuck his finger in Luke’s mouth to inspect his suck. "Great!" he said, "Luke will be able to nurse."

But latching on was difficult. Luke had only one side of his palate intact. Like drinking through a straw with a hole in it, he just could not make a complete seal to latch on. I started pumping round the clock. Every 2-3 hours. Before we left the hospital I had started finger feeding Luke. I had a syringe with the milk that I had pumped with a tiny tube attached and taped to my pinkie finger. I would let Luke “suck” on my pinkie while I would slowly press the syringe to "let down" the breast milk. It became a cycle. Pump --> Wash pump parts --> Finger feed --> Start all over again.

The hope was that by finger feeding, Luke would not get attached to a plastic bottle nipple, and that eventually we would succeed in getting a proper latch. But how long could I keep doing this? After a week of pumping and finger feeding and trying to get Luke to latch on I made a very important decision. Was it more important for Luke to receive breast milk, or to breastfeed? I wanted both. But I chose breast milk.

I pumped and pumped and pumped some more. Luke drank it up with a bottle created for babies with clefts, using a pigeon nipple. I was ecstatic when I was able to pump enough to put some in the freezer. I cried when I would spill the "liquid-gold." I was thrilled when I would fill up a bottle enough to feed Luke and have some leftover. I was satisfied when we saw him grow steadily and maintain his healthy weight.

I pumped in the car, I pumped at church. I pumped at the mall. I pumped in hospitals during Luke’s surgeries. I pumped in the movie theater. I pumped while I fed Luke. I pumped on a road trip across 6 states and back again. I pumped when I didn't want to. I pumped while eating dinner. I pumped  A L L   T H E   T I M E.

Luke grew and grew. I had times when I didn't think I could do it anymore. I thought I could not keep up with what Luke needed. I received a few bottles of donated breast milk and constant encouragement from family and friends. I drank a lot of water. Ate oatmeal. I smelled like maple syrup from taking fenugreek supplements. I did all that I could. All the while keeping the goal in mind. I wanted Luke to have breast milk just like my other kids. I had to fight the urge to blurt out when others saw me feeding him a bottle "this is breast milk, not formula!"

After almost a year I knew when it was time to be done. When I had done all I could do and it was time to be finished pumping. We celebrated. Friends threw a "Pump No More 2004" party for me compete with breast balloons.

I said goodbye to that pump and all of its parts. I said goodbye to the rhythmic song I’d listened to every few hours all year long ... “a-boom-dee-yea-a-boom-dee-yea.” I said goodbye to washing pump parts. I said goodbye to the round the clock 2-3 hour cycle. I said goodbye to that year of pumping and I was thankful to be done. Thankful to have given Luke exactly what I had given my other two children. The best start."


Unknown said...

Wow! What a great job you did! Thank you for sharing your story.

Diana said...

I am absolutely in awe of this achievement! I had to pump exclusively for two months (while bottle feeding baby and caring for one other child) and I think I nearly lost my mind. To do it for an entire year - you are my new hero!!! Great work!!!

Mandy said...

What a wonderful story!!!

Kelly said...

My son was born with a cleft lip (though an intact palate, so we could nurse) - and it is so helpful to see that we are not alone. It's an amazing journey. And mommas who pump and pump and pump are doing the hardest job in the world- way to go!! You are my hero!

Sabine Lavine said...

Such a beautiful gift to your child.

And your son looks great. I'd never have guessed that he once had a cleft lip.

mothergoose518 said...

I cried reading this. I am exclusively pumping for my cleft lip/cleft palate baby. He will be 4 months old next week and we are 100% formula free. I'm so proud of that fact, but I HATE PUMPING!!! We are still working towards a goal of breastfeeding as he gets older and has his repairs, and does fairly well with the Medela SNS, if only he could maintian his latch. We do more bottles than anything else however, as trying to nurse with the SNS takes 3 hands and really hurts my back. With 5 other children to tend to I'm amazed that I've been able to maintain my supply, but he gets fresh milk at each feeding AND I have a freezer full of frozen milk. Not being able to breast feed him really hurts my heart, but at least I can do this for him.

Unknown said...

I just found your blog and have been reading back through, I was a cleft palate baby and to see Luke today is just so inspiring. I didn't have a cleft lip but to see children who did it is amazing to see them grow up and succeed!