Jan 25, 2009

Thoughts on Breastfeeding

I wrote this post planning to save it in my drafts without publishing it. Unfortunately my laptop is a little overly sensitive and somehow I accidentally published it while I was typing. This is my 102nd post and I've never had that happen. Of course it would happen the one time I didn't intend to publish. I deleted that post but any of you that subscribe to the blog via Atom may have received it in e-mail form half way written. So I figure I may as well send out the completed version. I warn that this is a personal post and very long. More intended for the day I write a book than a cute quick blog post. Although my blog posts are seldom quick or all that cute. If you are squeamish about breastfeeding you probably won't want to read this.

We've had a stomach bug around here and as a result Steve went to bed early. I decided to spend a little time with Ainsley by myself. The other kids were asleep. First she was laying in my lap and she gestured toward my water. She surprised me by drinking quite a lot. She has done that on a handful of occasions. I can never figure out why some days she will eagerly drink from a glass and then other days but most days will refuse even a sip. Ah, the frustrations. Then we played pat-a-cake which basically means I move her hands and do the movements. Then she started reaching toward the drawer of my nightstand. I gave her the tiny tube of Lansinoh which she likes to chew on. We played with a beaded bracelet that Evie made me that I keep in the drawer. It was so cool to watch her turn it so she could slowly place it over my hand. She was really examining it. Then she'd take it off and put it on her own wrist. Off and on. Back and forth. So simple. Yet it was really nice. Then she lunged over me to get other things from the drawer. Quite rascally, really. But as I realized it was late I asked her to lay down even though I was enjoying this relaxing time together alone.

She was straddling my legs so she was laying her head on my chest. Every few seconds she would pop her head back up and I would ask her to lay down again. This is a familiar game that we play almost every time I try to get her lay quietly in my arms. I often feel as though she resists close bodily contact. Especially in proximity to my breasts. We gave up trying to nurse long ago but I think the memories are still there somewhere buried deep.

In the hospital when Ainsley was born she had a really good suck reflex. She would suck on her endotracheal tube (the breathing tube going down her throat that she was intubated with). The nurses would give her a pacifier and she would suck on that WITH the endotracheal tube in place. That's a challenging thing to do, no doubt, but no kidding she would. On the rare occasions that we could hold her she would suck on our gloved finger for long periods of time until I would be dying to pee. I hated to give her back to the nurse. It was SO difficult to get positioned with all the wires and tubes connected to her.

When she got the trach it was GREAT! Her mouth was free and she would suck that pacifier all day and night. Or if I happened to be there at the hospital, my finger. There was one time that she was sucking on my finger and my nail (which I usually cut) had gotten longer and she lunged and my fingernail stabbed her on the roof of her mouth. She then would not suck on my finger anymore, or at least for a long time. The girl has a memory.

While the endotracheal tube was in she could not eat. And she'd had that tube in for 5 weeks by the time she got her trach. As soon as she got the trach they tested her swallow with a video-fluoroscopic swallow study and detected micro-aspiration. Very small quantities of formula getting into the airway that could harm her lungs. So my worst fear came true. I would not be able to nurse her and she would remain fed with a tube through her nose that led to her stomach. Despite have a child in the NICU and two other young children at home I had been pumping my breast milk around the clock to maintain my milk supply so I could eventually nurse her.

I had breastfed both of my other children with good success. I was dedicated and pumped while my first child was in daycare and I worked despite the semi-disapproval of my employer. I continued to nurse her until I became pregnant with my second child. She longed to continue but I just didn't think my body could handle it. When Adrian was born he did well nursing. Unlike Evie he would take a pacifier and so I was less of a human pacifier than I was with her. But both children had a very strong desire to suck as many kids do. With Adrian we had to take the pacifier away on his third birthday and it was hard on him.

Like her brother and sister Ainsley had a strong drive to suck. I wanted to nurse her and hoped that eventually she would be given the approval to eat orally. I was given the approval to dry nurse, meaning I could nurse her after I'd pumped so she wouldn't get milk. And I found she loved that. She would root just like any baby. Sometimes when I was holding her I would find her trying to latch on and that she'd slobbered all over my shirt. Not a great look.

Eventually we got to bring her home from the hospital. December 22, 2006 was the date, just over two months after her birth. I continued to pump my milk and dry nurse despite the fact that it was exhausting. I clung to the hope that eventually things would change. Since we didn't have an exact cause for her airway troubles I naively hoped that they would resolve, the trach would come out, and she would magically be able to nurse. That did not happen. But I did notice that sometimes after dry-nursing for long periods of time she would actually get a little bit of milk. And she even seemed to like it and be able to swallow it.

This was exciting and bumped us into the next phase of our journey as we passed into the stage of working with feeding therapists and repeating swallow studies. By the time this happened her airway had become swollen completely shut at the level of her vocal cords. And this allowed her to pass a swallow-study, albeit not quite fairly, due to the fact that she could not aspirate formula because the swelling blocked passage to the lungs. I was allowed to wet-nurse her as tolerated with the approval of a very experienced feeding therapist at Children's Hospital.

Ainsley did fairly well. She liked to nurse but just couldn't take large quantities of milk. I dutifully tried to use an HME (for humidification of her lungs) while she nursed. Eventually I found a Tilson trach guard worked pretty well to keep the trach from being blocked by my body. But it took some practice for me to not be afraid I would accidentally suffocate her by covering her only source of air. All this time she was nursing with an NG (naso-gastric feeding) tube. The fact that she could nurse some gave me such hope that if maybe the NG tube came out of her nose and throat she would be able to do better and leave that feeding tube behind.

I tried even harder. I rented a breastfeeding scale so that I could weigh her before and after a feeding to know how much she was getting. Of course she hated the scale. She would occasionally take an ounce or two but not nearly enough to sustain her weight. I would get frustrated with her. She would cry. Slowly breastfeeding was becoming un-fun and the more I would push the more she would resist.

After giving it my best shot I realized that it would be a long time before she could feed herself. So we proceeded to get her a gastrostomy surgically placed into her stomach so she could be fed by a tube without it having to run through her nose, mouth, and the swollen airway tissue. She was vomiting too and we hoped that maybe all these things would be helped by eliminating this foreign object. I knew I would be happy not to have to reinsert the tube any time she accidentally pulled it out. I knew I would not miss having to tape it to her sweet little cheek. But the idea of cutting into her soft little belly killed me. Yet I knew it had to be done.

She was happy not to have the tube on her face and we anxiously watched for signs that it's removal would help her swallow, would help her airway, would stop her from vomiting. But it did not. We took a break from nursing while she recovered from the gastrostomy surgery. And again the next month when she had her second cranial reconstruction. I was so terrified to hurt her with the massive trauma to her head and the stitches that went from ear to ear. These breaks did not help our breastfeeding efforts. She did continue to nurse but she also started to get teeth. Lots of beautiful teeth. Looking back I think this is where things went bad. One too many times she bit me and didn't like the reaction. With her cognitive and motor delays I think she just didn't know what to do or even understand that she was hurting me. I got nervous and had a hard time relaxing and trusting her.

Things were further complicated because I was working in our home with a feeding therapist who wasn't particularly experienced. Not that there are a lot of occupational therapists doing home visits who know much about breastfeeding an infant with a trach and a cerebellum malformation that effects all motor skills. Many times I got the feeling she didn't really think I should be nursing. I frequently felt confused. The swallow studies showed she was at risk for aspiration yet we'd been given the okay to feed. She was able to nurse yet there was clearly a problem of some kind. The therapist wanted to move forward to each new level of feeding, introducing textures and hard munchables even though Ainsley was barely able to handle smooth purees without gagging.

So about the time of her first birthday she nursed for the last few times. There was one occasion when she had a high fever that she nursed for comfort for quite awhile. It gave me such hope but it was false hope. It was not to be. I finally conceded defeat and stopped pumping. It broke my heart to know that it was over. I still would try to hold her close in the cradled position so I could pretend. I felt like in some way that if I could nurse her and do that one thing that mothers and babies have done for thousands of years that somehow that would make up for all the terrible things we'd been through: The time separated in the hospital, the dozens of doctors, the surgeries, the comments from family and strangers, the knowledge that our lives would never be as they were before. When I held her close and nursed her I could almost feel like I had the child I'd been expecting. It felt like it did with my other children. And I loved sharing that sense of peace as they drifted off into a blissful sleep in their mother's arms. And that's why it hurt so much when that too was taken.

Just holding her near me seemed to make her uncomfortable. Many times I could see that she wanted to nurse but didn't trust herself or me. She wanted to so badly but was afraid and so she learned over time not to even be held in that position. So I was surprised when tonight after all this time that she moved herself from straddling my legs with her head on my chest, into a cradled position. And then she put her fingers in her mouth and explored her tongue and lips. Even biting her finger very very gently. I could see in her eyes that she was processing thoughts. After a few minutes I lifted my pajama top just to see what she would do and she brought her lips up to my nipple for a few seconds. All of a sudden all the old feelings and grief came back over me and I had to fight back tears I thought I'd long stopped shedding over this. I let her lay there in my arms without moving and hoped that somehow if I could relax and let her be in control she could simply enjoy being close to me. And just maybe this could lead to her being more comfortable being held. I enjoyed every moment as she slowly drifted off to sleep in my arms.

.....And then I took her to the crib and hooked her up to her blood-oxygen level monitor, like every other night since she was born, so that she is safe while she sleeps and it will alarm if anything goes wrong.


  1. Oh Susan I can barely type my comment past the tears. Nursing all my children and not being able to with Gage is and was so very painful.
    I feel as though he missed out on some of those sweet bonding moments we have when we nurse our children.

    Beautifully written, heartfelt, and touching and I am so pleased she fell asleep peacefully in your arms.

    Thank you for sharing such a close personal matter that is so very evident how much it means to you.


  2. That was an absolutely beautiful post. You've definitely warmed my heart tonight. ((HUG))

  3. I just happened upon your blog as it was on the list of someone else's. What an incredible post. I don't know your whole background, but it sounds like you tried so incredibly hard with the breastfeeding and pumping and someday your daughter will see the efforts you went to. And so sweet that she fell asleep in your arms like that!!

  4. Thank you for sharing something so personal and so painful. Beautifully written.


  5. Susan, I am not a breastfeeder. I gave birth to 4 live children and opted out each time, even though I considered it with each pregnancy. But I have so much admiration and respect for those who do. It's such an immense thing to do for your child, and a simple thing as well. I got choked up reading this, because even though I didn't breastfeed, I was never really able to cuddle my baby and feed her a bottle. She wasn't able at first, and then decided she didn't want to. I was and remain heartbroken over this. It's such a special bonding time and I never realized how much I enjoyed it until it was taken away. Like you, I harbored many many hopes that things would just change and she'd be able to eat and I could hold and cuddle her while she ate in my arms. It didn't pan out, and even though she eats typically now I'm not sure I can ever get past those early days, and how difficult it was.


  6. My stomach is knotted reading this. I am sitting here pumping for my 7 month old who is in his room with the nurse. He has a trach, vent dependent, and so much more. Every part of your story just hits me so hard... I can relate to everything you said. My son did not have a suck reflex when he was born and dry-nursing was awful. Now I let him do it for "fun" but he still does not know how to suck. I too sometimes hold him and "pretend."

    I just wanted you to know you are not alone. There are plently of us moms out there, just like you, who have the same type of kids, the same defeats, and the same joys at the smallest of achievments.