What we've been through (part II)

Baby's third hospitalization must've started toward the end of August. He was four months old. By the time we were released, baby had spent more than half his life in the PICU.

We went to our ENT doctor when babe's breathing was troubled again. We packed our bags this time, expecting to be admitted again. We were planning to go to our friends' wedding over Labor day weekend and expected this hospitalization to be quick and easy like the last one.

My memories of the first days are vague. We knew that if the sclerotherapy wasn't successful, the doctors would press for a tracheostomy. We still didn't want to do that, but it was starting to look like the other options weren't working. We were admitted, the sclerotherapy scheduled. We tried to extubate immediately afterwards, but baby didn't tolerate it. He had to be reintubated. We slept at home on the nights baby was sedated and intubated. I was pumping breastmilk for him to be fed through a tube. When we did extubate a few days later, baby had a facial droop. The left eye was still droopy from the first procedure, but now the left half of his mouth drooped, too. Actually, "droop" is too mild. It was totally paralyzed. I was anxious about his ability to swallow, but the doctors said we could try to breastfeed.

In the days after intubation, it was really difficult to get the baby to nurse and make sure to pump enough to maintain supply. The drugs made baby irritable. He wouldn't latch. When he did, I wasn't sure I could hear him swallowing. I wasn't pumping enough because I wanted to have milk for him when he did nurse, and I thought that at any moment he would feel better and I would have my happy, hungry baby back.

What we've been through (part I)

 I've mentioned many times here that my baby was sick. His first birthday is fast approaching, and so is the March for Babies, and our doctor says that there's an 80 percent chance he will never need more intervention. We are cautiously optimistic. Our babe is a normal, happy, healthy 11 month old.  Last night I dreamed that I became a pediatric nurse. I cried in my dream, because my heart still hurts so much, and being around sick children all the time would be so hard. But it felt right, because now I have greater compassion and respect for parents and the urge to help other families through such trying times.


Around 26 weeks in my pregnancy, my midwife sent me for an ultrasound because my baby was measuring small. The ultrasound showed a healthy-sized baby with a cyst in his neck. The doctor thought it was a benign branchial cleft cyst that would resolve on its own. I had a follow-up ultrasound four weeks later, which showed no change, and my midwife and I agreed to continue with our plan to birth at home.

I had a very long labor, and babe was born at the hospital. He was perfect and vigorous. We enjoyed a blissful 6 weeks at home. We learned to breastfeed and my postpartum recovery was pretty easy.

At our one month well-baby visit, our pediatrician was worried because baby's breathing was noisy (lots of snoring and snorting sounds), and the cyst in his neck was now visible, an egg shaped lump below his left ear. He suggested we go for an ultrasound. We didn't want to. We didn't want there to be anything the matter with our child.
"How about next week?" we said
"How about tomorrow," said our pediatrician.

What breastfeeding mamas should know when your babe must be hospitalized

Breastfeeding was the obvious choice for my baby and me, and we were lucky that we had an easy time learning to nourish each other in this way. Moms who must exclusively pump from the beginning have their own set of challenges, I'm sure, but since I already had established my supply and my baby knew how to latch, when we were admitted to the hospital our challenges were uncommon and the hospital staff didn't anticipate that we would need help. I think some of our difficulty could've been avoided if I'd know more what to expect going in. I want to write about what I learned about pumping and breastfeeding.

My baby was 7 weeks old when he was hospitalized for the first time, and he was either not nursing, or not nursing well for 2-3 weeks. There were many times when he wasn't allowed oral nutrition at all, and I pumped during those times, and had no trouble keeping up with the demand. The third time he was hospitalized, however, was really difficult. He had surgery and was intubated for a few days, and I was pumping several times a day, just like the last times we had been through this. I got into trouble after he was extubated, when we were trying to transition back to the breast. It wasn't going well. The babe was either sleepy or agitated from the drugs and his ordeal, and not interested in the breast. I was skipping pumping sessions because I was hoping he would nurse, and before I knew it days had gone by and my supply was half what he needed. That is also when we realized that babe was not swallowing and it would be weeks or months before he could nurse again. He would be fed through a feeding tube, and I would be pumping exclusively. This news was devastating.

Our medical team knew I was committed to breastfeeding, and although everyone said supportive things and tried to be encouraging, their eagerness to "supplement" my babe's diet with formula irritated me. I felt that they were just humoring me and waiting for me to fail. They were genuinely happy and surprised when my supply caught up! Showed them! On a side note, when I went to Target to buy a breastpump, they gave me this coupon for $8 off a can of Enfamil. Shame on you, Target. Shame on you, Enfamil. This attitude is pervasive, but don't let it discourage you! Mama's milk is the best food for babies, especially when your baby in hospitalized.

I met with a lactation consultant, and she was very helpful, encouraging, and enthusiastic that we would get my supply back up. She put me on an intense pumping schedule--I was pumping 8-10 times a day--but my supply was still lagging. I was depressed! My breasts missed my baby's mouth and still felt full after 20-30 minutes on the pump. It was impossible to relax and I wasn't getting second and third letdowns in a session.

 Here is what worked for me:

1. Pump until the flow stops. 
2. Hand express for a few minutes on each side to empty the milk ducts. (Stanford did a study that showed a significant increase in production in moms who hand expressed after pumping.)  
3. If breasts still feel heavy, massage-stroke-shake to increase prolactin levels and help move the milk down.
4. Repeat these steps at least one more time.
5. Drink a big glass of water and eat a snack.

You only need to wait 40-60 minutes between pumping sessions. It is the frequency, not the length of time you spend pumping, that will stimulate your breasts to increase your supply.  In this way, you can pump three times in the morning (then take a 2-3 hour break), three times in the afternoon (then break for dinner),  three times in the evening (then go to sleep for 4-6 hours) and once in the middle of the night. It is a full time job! and I was very fortunate that I didn't have to work--I would not have been able to do this if I had been working. This crazy schedule isn't forever; it took me about 10 days to get my production up where it needed to be. Now I pump 6 times a day for 20 minutes. 

Pumping this way also became a spiritual practice and a way to deal with my grief. I would sit in the pumping room, plugged in, and meditate. I focused on my breath. I imagined holding my baby and his soft mouth.  I felt my pain. I imagined my babe enveloped in healing light. I thought about happy cows, standing in green pastures. Different things.  Around this time, I read a piece on tonglen from Pema Chodron, and then practiced breathing in the suffering in the PICU, and letting out healthy, healing, nutritious milk for my baby. Learning to relax long enough to let-down is essential.

 Here are some other general tips for when your baby can't nurse for any reason:

• Pump every 2-3 hours for 20 minutes, or however long/often your baby would nurse. Keep up your pumping schedule even if you think your baby will be able to nurse later. Your breasts are never totally empty, and you will make more. 
• Make sure you eat and drink enough. This is really hard, so get the nurse to help you with gentle reminders and by keeping your water pitcher filled. 
• Don't skip pumping sessions for any reason. Don't do it!
• Write down how much you're pumping. Make sure you're making enough in a 24 hour period. It's also helpful to write down things you think might affect your supply, like herbs/supplements you're taking, your menstrual cycle, your mood, diet, etc.
•  Snuggle your baby as much as possible skin to skin.
• Get one of those hands-free pumping bras. I love mine from Simple Wishes. (affiliate link)

A note on supplements:
 I took feungreek 3 capsules three times a day with meals, I drank 2-3 quarts of nursing tea (affiliate link) a day (I made it in quart-size mason jars), and I took More Milk Plus (affiliate link) tincture 4-5 times a day. I took a prenatal multivitamin, added a DHA supplement, and made an effort to get more omegas in my diet. It's good to eat lots of oatmeal (I add about a tablespoon each of flax meal, brewers yeast, and coconut oil to mine). I found that lactation cookies really work. They say that when you have enough fenugreek in your system your pee will smell like maple syrup, but mine never did. Maybe fenugreek just isn't a good herb for me, but I definitely noticed a difference within about 24 hours of taking the More Milk Plus tincture. It tastes like medicine, but it works. So do the cookies :)


I suppose I need to remind you that I'm not a lactation consultant, and this is not medical advice. I am just a mama who's been through it wishing you well.


EDIT 12/18/12:  I've had good results using fennel essential oil (affiliate link) topically once a day. Before going to bed, I mix a few drops essential oil with coconut oil in my hands and then massage into my breasts. I am only pumping 3-4 times a day now, but somehow still keeping up with baby.