Nursing through a Major Illness: WBW, post 3

This is the third post in my series celebrating World Breastfeeding week. To read the introductory post and ground rules for discussion, click here.

In March of 2011, we brought our newborn son to the local emergency room with difficulty breathing and discovered that our five week old baby had a rare lung defect called congenital lobar emphysema.  We were flown to Dallas for emergency life-saving surgery, during which half of one lung was removed.  To begin reading about those events, you can read my posts from April, where I shared the entire story of his diagnosis, surgery, and recovery. 

Knowing the dramatic nature of his surgery and that we weren't even able to hold him until five days after surgery, most people are surprised to know that I was still able to nurse Andrew, once he was capable of eating again.  During his hospital stay, our baby was on IV fluids alone for a couple of days, and then a feeding tube was put in place for him to receive nourishment.  He had surgery early on a Thursday morning, but it would be a week later before I could nurse him again.

My seven week old baby taking his first bottle of my pumped milk.  We had just been released from ICU into a room on the surgery recover floor of our children's hospital.  

In Search of Information

Not long after Andrew's surgery, I wanted more information about how to make the breastfeeding relationship work with such a difficult situation.  I looked to my Breastfeeding Bible, La Leche League International's The Womanly Art of Breastfeeding, which I had handy on my Kindle.  Surprisingly, there wasn't much information in the latest edition, which I had read cover to cover in anticipation of Andrew's arrival.

There is a section in the book on hospital stays for both mother and baby, but much of the advice is about just making it work.  Climb into the baby's crib, but do what you have to do to nurse that baby!  Great advice, but how does that work when your newborn is physically incapable of taking in milk? 

Andrew was learning to breathe with only 1 1/2 lungs.  He also had RSV, which always makes breathing difficult.  And he was in pain from surgery.  Thanks to the morphine, our baby boy was pretty out of it much of the time, and many days he wasn't responsive at all.  Even as he became more alert, the doctors explained to me that he needed every bit of energy he had to breathe, so none could be spared for eating.  This is why he was on a feeding tube.  He started out receiving 7 ccs an hour of breastmilk, and they slowly increased that amount every day. 

The nursing book's lack of information regarding serious hospital stays and illnesses made me feel even more alone than I already did.  But fortunately, it did have plenty of information about pumping and maintaining milk supply for working mothers, so I simply followed their advice and applied it to my situation. 

For much of our hospital stay, there was very little I could do to help my son.  In ICU, he had 24 hour care from skilled nurses, and I wasn't even able to change his diaper.  Aside from touching his head and comforting him when he was in pain, maintaining my milk supply was the only thing I could do for my baby.  If you're ever in my situation, and Lord willing, you won't be, here's how you can make it work:

Make it a priority.  

There were many times when I would interrupt conversation with visiting family members by saying "Excuse me, but I have to go pump now."  My attitude was that if he came out of all of this OK, then there was nothing he needed more than breastmilk.  I was perfectly aware that we might have to do bottle feeding during recovery, and that he may never go back to nursing from me, but I still wanted to maintain lactation so that those bottles contained my milk.

Make you a priority.  

Eat well and sleep well--as well as you can at a hospital.  Our hospital offered free meals to nursing mothers, which I didn't hesitate to use.  Other than sitting in the waiting room during his actual surgery, I didn't eat out of the vending machine the entire 12 days we were there.  I wanted healthy, well-balanced meals, with the occasional daily slice of chocolate cake.

Put yourself on a pumping schedule.  

I pumped every three hours all day long.  I experimented with night pumping, but I found that if I pumped at midnight and then again at 6 am, I got just as much milk, maybe even more, than if I pumped at midnight, 3 am, and again at 6.  Basically, it's more important to get a decent night of sleep than to pump around the clock. I also made sure that my nursing schedule worked well with other events, such as rounds.  I wanted to be available when the doctors came by, so I made sure I was done pumping by 6:45 am.

Double pump using a good quality pump.  

This is probably a no brainer, but it saves mucho time and will help you produce an abundance of milk.  The hospital *gave* me (I'm sure it's somewhere in our $200,000 of medical bills) the Medela attachments to use on their hospital grade pumps.  My husband brought my pump with him to Dallas, but I never used it because I knew the hospital's was better.  

Make it convenient.  

Our hospital had pumping rooms on certain floors, including our own.  The third time I needed to pump, I was unable to because the two rooms that were reserved for ICU patients were occupied.  I knew this set-up would never work for a long-term stay such as ours.  One of the nurses brought me a partition and a pump, so I set up a nursing corner in our ICU room (which was huge).  The more convenient it is to pump, the more frequently you'll do it.


After almost a week in ICU, we were finally moved to the surgery recovery floor.  On Andrew's 7th day in the hospital, he was finally breathing well enough to handle eating.  He took the bottle of breastmilk beautifully.  He was only permitted a couple of ounces at a time, but he ate it well.

We also discovered that he had lost his feeding cues, meaning that he was unable to tell me when he needed to eat.  After 6 days of having food pumped into his tummy, he had to learn to recognize hunger again.  In the meantime, I fed him on a schedule.  The very next day, he was permitted to nurse, which he also did beautifully. 

We had some issues with vomiting, perhaps related to the RSV, so he went back and forth between nursing and bottles.  When his chest tube slipped out, we had to wait quite a while to feed him again because we weren't sure if surgery was going to be performed again or not.  By the time he was released, he had actually lost some weight while in the hospital.  That's when the doctors brought up formula.  But I still pushed through even that, and my baby only had one bottle with breastmilk with a little bit of formula.  Ultimately, we had a great nursing relationship and my baby later refused all bottles.  He was a great little nurser.

Have you had to deal with nursing during a hospital stay?  I think it would be extremely difficult when the baby is in NICU as well, since mom's really needs the baby to nurse to get her milk supply going.  I was grateful that nursing was well-established when Andrew had his surgery.