Nursing Through Infant Surgery

I know that for those of you following the blog this will mostly be a repeat of information, but the local La Leche League leader asked if I could submit an article to the LLL publication New Beginnings about nursing Ben throughout his hospital stay, so here's what I compiled from my own notes and blog entries:
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Nursing Through Infant Surgery

By Lara Garrett

On April 13th, 2009 I attended my first La Leche League meeting with my eight week old son, Ben. I’m not exactly sure what I expected, but I was pleasantly surprised. I walked into a room full of moms just like me. I listened to a discussion about first foods and observed a level of comfort in sharing, similar to watching a discussion between old friends.

While pregnant I had several other pregnant friends and all of us planned on breastfeeding. By the time I attended that meeting our children were between the ages of one and four months and all had either entirely or partially begun using formula and I remained unwavering in my decision to exclusively breastfeed. When one friend told me, “I really don’t like breastfeeding,” I knew I needed to reach out and find people who could support me in continuing. And while I believe my existing friendships are invaluable, in order to continue breastfeeding through reflux (which began at three weeks and have continued since) and then surgery, I needed other moms who were as passionate about breastfeeding as me.

When the meeting opened for discussion I asked if anyone had experienced nursing before and after infant surgery. The room fell quiet as I calmly explained that my son was born with craniosynostosis – prematurely fused sutures in his skull, resulting in only one soft spot. He would be needing surgery around twelve weeks of age to remove a six inch by one and a half inch section of bone from the top and back of his skull. I could feel the compassion from the other mothers in the room and I even had to pause to reaffirm that everything would be ok. I mainly wanted to hear about anyone else’s experience with nursing and surgery, but no one had shared that misfortune.

I then shared that my husband had taken a job out of town, so I was alone with the baby five days a week and through the reflux and pre-surgery appointments, it had been a difficult first two months. Although none of the mothers had experienced infant surgery, I left with several phone numbers and email addresses and I started getting emails that evening from mothers reaching out to me. I had a phone call the next day, lunch date later that week, and the connections and support has only grown since then.

The stress of waiting for the surgery weighed heavily on our family. Breastfeeding caused me to slow down, relax, and focus on one moment at a time. I developed such a strong bond with Ben so early and could read his cues so easily that he rarely cried. Before his birth I seemed so uptight and in so many ways I am a different person now.

One of the LLL leaders found another mom out of state who also nursed through having an infant in surgery. I spoke to her on the phone and she provided reassurance and support and encouraged me to be proactive throughout the pre and post surgery interaction with the staff.

During my early appointments with the surgeon, I came with pages of questions on craniosynostosis and about our surgery in particular. Many of my questions involved nursing before and after. Ben’s surgeon supported my wishes to continue to breastfeed throughout this ordeal. I let out a huge sigh of relief when he said I should nurse as soon as Ben is released from the recovery room, because that is the first thing I wanted to do.

During every visit with the hospital staff or surgeon, I brought up breastfeeding. I noticed on several occasions, nurses and staff writing “Exclusively Breastfed” across the top of Ben’s paperwork. They encouraged me to bring frozen pumped milk and my pump to the hospital in the chance that Ben needed a feeding tube. Although I had read horror stories of moms being encouraged to wean prior to infant surgery in the past, I was pleased by my interactions with the hospital staff and surgical team. Everyone understood and respected our intentions to breastfeed throughout the hospital stay.

I later met with an anesthesiologist during the pre-operation appointment. He said I should nurse no later than midnight the night before surgery, but I could give him water until 3:30 because it’s a clear liquid. I was dreading this, considering Ben normally nurses several times between midnight and 7:00am, when surgery was scheduled to begin. I brought this up with my local La Leche League leaders and they led me to several articles from KellyMom.com about whether breastmilk is considered a clear liquid or not. I called the anesthesiology team with my research articles and they agreed to let me nurse Ben until 3:30 that morning. I was greatly relieved and Ben did fine without nursing the rest of the morning.

The night before surgery we didn’t sleep at all. I returned to a nesting state, where I insisted the house be spotless before we left. I didn’t want to worry about cleaning when I came home. That night I nursed Ben as much as I could and I pumped just before we left.

We arrived at 5:30am and the wait was impossibly difficult. The staff let us stay with Ben through all of the early testing (vital signs, etc.) and we changed him into a tiny hospital gown, then carried him down the hallway. The most emotional part of the day was handing him over to the nurse at the hospital door and saying goodbye.

The surgery started nearly two hours later than expected because the anesthesiology team had a difficult time starting his IVs and breathing tube. I pumped again during our wait. At 11:00 am the surgeon brought us into a conference room and told us the surgery went very well.

An hour and a half later we were able to see Ben. His head was bandaged and he had three IVs, one in his arm and one in each ankle. We traveled with Ben to the pediatric ICU and they were able to take out the IV in his wrist. He was drowsy but nursed well when he woke up. It was so emotional to be holding him and nursing him again, with a dozen tubes and wires stretched from his bed to the chair where I was sitting. Our nurse was amazingly supportive. She helped position me and Ben so that we could nurse as easily as possible, considering. She added IV extensions before her shift was over, so that I could more easily pick him up to nurse without needing a second person to help.

Later that evening he needed a third blood transfusion. My husband’s blood is CMV negative and the same type as my son so he qualified to donate for Ben’s transfusions. I nursed Ben while he was receiving this transfusion and had another emotional rush as thought about how a part of my husband’s body as well as my own were able to sustain our son’s life.

Ben nursed well throughout our hospital stay. We were allowed to sleep next to him in the pediatric ICU and then we were moved to our own room the following day. Friends and family brought us meals and Springfield’s LLL sent me a sweet card and a gift certificate for delivery from a local restaurant. We stayed in the hospital for four very tiring days. Once home he nursed more frequently and slept more irregularly than before, but we had expected this. We were all so exhausted but at the same time relieved to have this behind us.

Once again, I am so grateful for all of the support I've received from my local La Leche League. I would also like to encourage others to be proactive about their own medical treatment and if something doesn't sound right, research it! It's ok to ask questions in a calm and respectful manner, and from my experience the doctors are receptive and ready to work with us. It is horrible to see your baby suffer through surgery, but I honestly feel like nursing him throughout that time was truly the best thing I could do for my child.