I Am On Fire--the fight for breastfeeding

I am on fire. The burn begins as a tingle in my feet and slowly rises through my body. The burn peaks as a flush through my cheeks now coupled with a ringing in my ears. It burns and I can do little to cool the flames. My daughter is crying. I am standing next to her small metal crib. The room is dim, only lit by the monitors she is attached to. The alarms start to ring because her heart rate has risen. I hate those alarms. She is crying. I am scared to touch her. She is covered in wires. A central line pokes through her head. A replogle tube is threaded down her mouth into her stomach and is sucking out the bile. Heart monitor, blood pressure monitor, oxygen monitor. All threaded from this tiny body into these beeping, lighted machines that sustain and monitor her tiny little life. I am scared to touch her, but my entire being aches to do so. I reach in to stroke her skin. I lift her from beneath the wires and hold her. I hold her as gently and delicately as I can so I don’t pull out any of the wires. I pat her bottom. I talk to her soothingly. I clumsily offer her a pacifier though it is difficult with the tube in her mouth. I don’t know what else to do. The nurses will eventually come because of the alarms. They will offer more soothing, but there is little else they can do. There’s the morphine, but that scares me. I don’t want my baby to be in pain, but I don’t want her addicted to morphine. The doctors say that it’s probably not post surgical pain anymore anyway. She is hungry. She wants to eat. She wants to nurse. I want to nurse her. I can’t. Instead I pump. Every 3 hours I sit down and pump my breasts of their milk. I walk down the hall to the milk bank and drop off my stash where they will keep it until my baby is able to eat. For now she receives lipids and tpn through her PICC line. She eats through a tube in her head. In all my fantasies about my first days with my little girl, I never imagined that this is where we would be. In the NICU.

We had four good days. Her birth was beautiful. Everything we planned, prepared, and hoped for it to be. She was perfect. I had no meds. I didn’t even let them put a hep lock in my hand. I wanted to do it on my own. I did. She was thirteen days past her “due date” and she arrived a perfect 8 pound 3 ounce angel from heaven. She nursed right away and we were overjoyed. I noticed early on that she had a lip and tongue tie like her older sister. But I was prepared for that. We already knew the pediatric dentist that would perform the frenectomy. Lip and tongue ties were not going to get in our way of breastfeeding. This time. Despite the ties, nursing was going fairly well. For four days, my little girl nursed successfully and happily. Her wet and dirty diapers told me that we were doing okay. We were doing okay. Then day five began. As each of the other days post birth went, we spent most of our time in bed, nursing and sleeping. Day five was different. On day five we spent the day nursing and sleeping-- and throwing up. Every. Single. Feed. Each time my baby would nurse, she would spit it back up. Sometimes it was right away, other times she’d have a few minutes or half an hour before it would come back up. She didn’t hold down a single nursing. As the day went on, the spit up was turning more yellow. My husband started researching online and we prepared for a visit to the doctor. We were primarily concerned that she was becoming dehydrated because she wasn’t retaining anything. Because it was Sunday, we called the after-hours care line for the pediatrician. She told us to go to the ER. So we went, hoping and expecting a diagnosis of some sort of reflux. I nursed her the entire time we waited and while we were checked in to the ER. In between getting her weighed, vitals taken and symptoms being notated, the intake admin commended me for nursing. I was glad that I could soothe my baby during all the chaos. Then we went back to the waiting room. While we were waiting she spit up again. This time it turned green. Bright, neon, bile green. It was then that I knew that this was not reflux. It was then that the fire started. I knew that something was really wrong. As we suspected she was dehydrated, so the nurses started to attempt to put in an IV line to provide her fluids. She was cold and fussy. These elements made it extremely difficult to put in the IV. They poked her so many times. All over her body, trying to get a line in. She cried and cried. They were finally able to get a line in her head. Then the doctor came in. She saw the bile all over our clothes and she said that was not good. She would need more testing to confirm suspicions, but she was going to call the surgeon on duty. Surgeon. She told me to stop nursing her. This was gasoline to the fire. For the few days we had together since her birth, I had been able to soothe my baby girl simply by putting her to my breast. This is all she wanted and this was all she needed. Now something was very wrong and I couldn’t help her. They were calling the surgeon. After x-rays and ultrasounds, all of which my poor baby screamed and cried through, there was no clear diagnosis. Surgery would be the only way to see what was wrong. Finally the surgeon came in to talk to us. The list of possibilities for what might be found was horrifying. I couldn’t breathe. That moment brought me to my knees. I carried my baby back to the room where we met the anesthesia team. I put her in the bed and they took her away.

Intestinal atresia. Her intestines were blocked. A webbing of tissue was blocking her intestines. Of the horrors that could have been, this was not the worst on the list. The surgery was a success, the blockage repaired. Now we had to wait for her to heal.

I keep pumping. I keep pumping waiting for the day that the doctors say we can feed her. Finally that day comes and we are hopeful. They prepare a small bottle. It is filled with the milk I have pumped. We feed her gently and pensively. She eats and we are hopeful. Over the days her feeds are increased and the hope grows that her intestines are healing and she is growing in strength. I start to ask when can I feed her. I start to discuss with the neonatologists and the lactation consultants. There is a delicate and challenging balance in getting out of the NICU. My baby must maintain feeds, but there has to be some quantification to document her improvement. This means either by milliliters of milk consumed by the bottle or by the time she spends at the breast. They say I can start to feed her. She does well. As well as can be expected by an infant who hasn’t fed from her mother’s breast in weeks. I am hopeful. She does not stay latched on long, but she does eat. Then the battle with quantifying begins. The neonatologist wants her to nurse at least 20 minutes. Whatever she comes up short, must be bottle fed and then tube fed. We do this dance. My husband and I debate just bottle feeding her so we can get her home versus pushing breastfeeding. I have grieved the breastfeeding relationship lost with my first daughter, I will fight for this one but I am already feeling the sadness and self-doubt creeping in the back of my mind. We still have a lip and tongue tie to deal with and as I try to convey this to the doctors, it does little to change the standard for which we must achieve a successful discharge from the NICU. We charge forward. My baby doesn’t latch for long. Most of her feeds end in a bottle or tube feed. After a few days another consult with the neonatologist allows for removal of the feeding tube. We are put on the discharge track and I am tasked with “rooming in”. Rooming in is how you prove that you can take care of your baby once discharged. They turn off the monitors and the nurses turn over the care tasks to you the parent. This was our chance to prove that we were ready to go home. Our last night in the NICU was the most brutal as I fought for every single feed. I wanted her to nurse. I was so scared that because she wouldn’t nurse for long they would make us stay longer. I didn’t know what the outcome of my sleepless nights would be. Would my efforts to breastfeed be lost all for the need to quantify how much she was eating? I just wanted to bring her home so we could bond and breastfeed like we were before she became sick. I just wanted to go home.

The next day they let us go home. I felt like I had been through a war. In the NICU there are no windows to the outside. Leaving the building all the lights are too bright, the noises too loud and the summer heat too hot. I was over sensitized and over tired, but I was bringing my baby home. With my baby I brought home a trunk full of breast milk. Three huge garbage bags of milk. We had to empty our freezer to accommodate it all. I had established a huge surplus supply of milk over the three weeks of our NICU stay. I could deal with that. At least I had maintained a supply. An oversupply could be managed. Wanting to feed her so badly, I stopped pumping and tried to exclusively breastfeed my girl once she came home. This was a mistake as my breasts ached with their overabundance of milk. I had to pump. I pumped. I breastfed. We gave her bottles too. In the post NICU world, I too still needed to quantify her intake. It was a blur of these things. We called a lactation consultant who gave us practical and emotional support through our challenges. We scheduled the frenectomy.

After being forced into a world of surgery and post surgical recovery, we were now scheduled into an elective procedure for our baby girl in hopes that it would improve her latch and our breastfeeding relationship. The procedure lasted 10 minutes. The doctor brought us back a fat lipped, red faced, screaming baby. Her ties were released. To prevent the formation of scar tissue, we had to do stretches on her mouth four times a day. These were brutal, but it was all for the greater good that would hopefully be a stronger breastfeeding relationship. We continued to try to latch and bottle feed and struggle. I was not skilled in breastfeeding positions before the NICU and felt even less capable after. I defaulted to lying down with her in the bed so that we could both be as relaxed as possible. This doesn’t translate well if you have to go somewhere. I tried the nursing pillows to help position her, but these only seemed to get in the way. We continued to struggle. Our best times were at night. She nursed easily at night. Her semi-conscious state allowed her to revert to her instinctual nursing behaviors and to momentarily regress past her learned bottle feeding preferences. I held on to these moments and I still do.

The struggles of our breastfeeding relationship amplified even further as our family prepared to move 2000 miles cross country. I did not want to give up, but my sanity was taking a hit. With the help of the lactation consultant we evaluated our situation again. We made our move cross country and moved forward.

I am pumping and I am nursing. I am holding on to the night nursing sessions with all that I have and I am pumping during the day. I am at peace with this but it would be an untruth to say that it doesn’t sometimes make me sad. My little girl is thriving. She is happy. She is healthy. My family has come through the storm and we see the rainbow.

Four years ago, I felt a deep sadness and grief over losing a breastfeeding relationship with my first daughter. I pumped for her for a year and I am proud of that. I am now pumping for my second daughter and I am proud of that too.

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