Booby Baggage

Katie & Lily

Every time I pick my daughter up, I hug her, I squeeze her, I kiss her all over.  She is absolutely edible, as all babies are. However, because of her start in life, every time I pick her up, in addition to loving all over her, I unconsciously find myself judging her heft. Does she feel heavier than yesterday morning? Are her kissable cheeks any squishier than last night? Was that beautiful bit of thigh fat there the last time I gave her a bath? Try as I might, these thoughts crowd my mind and Katie has a perfect term for them, booby baggage.

Lily was born at the Birth Center after a shockingly fast one hour and 40 minute labor. She was healthy and cried right away. She looked a little different, but we all know how newborn babies sometimes resemble aliens rather than perfect pink offspring. She was able to latch at the Birth Center with a nipple shield and we went home that morning. At home, though, Lily still struggled to eat. The first day, she was awake for maybe an hour total. Second day, same thing. She wouldn’t latch so I was hand expressing colostrum and dripping it off a spoon into her mouth.  She still didn’t poop. “Weird, “I thought, but figured she was just getting used to the world.  At 11 pm on the day after she was born, Lily stopped breathing.

It was only for about 30 seconds, but her color changed and my heart stopped. After gagging and coughing after the 30 seconds, she started breathing again. My heart however, was still frozen.  Twenty minutes later, she did it again. My husband and I buckled our tiny two day old baby into the car and flew down Rt 202 to the DuPont ER. Any thoughts we had of her slow start in life being just typical baby behavior were gone. We KNEW something was wrong.

They sent us home from the ER early the next morning saying it was just a bizarre episode and that she was fine. Her third day at home, she was still barely eating, still not pooping.  Fourth day we went for a weight check at Brandywine Pediatrics. The doctor looked her all over as she wriggled around on the crinkly exam paper. She had a pink bow in her hair. The doctor sat down and said the words that will echo around in my head until the day I die. I see the words floating before my eyes as I fall asleep each night. The words follow me around as I push her stroller through the park, my buggy through Target, as I wait in line at the bank.

He said, “ Her exam was just OK”.

Just ok? What does just ok mean? What’s wrong? What’s going to happen?” we asked. And then, as I held my sleeping daughter in a crocheted pink blanket I had made for her years before she was born, the doctor proceed to list EVERYTHING that he saw that was WRONG with my daughter. He went head to toe and pointed out all these anomalies that we had not even seen.  He said there was something genetically wrong with her. He wouldn’t say what though. He actually even made me ask, because he didn’t say, “Is it fatal?” No mother should ever have to ask that. His response? “Probably not”.

Lily was sent to the ER that day for severe jaundice because she still wasn’t eating and for genetic testing. If there is anything to make you feel like you failed as a mother, it’s having your baby sent to the ER because she is literally starving to death. I had tried everything to get her to eat; saw a LC at Brandywine Pediatrics, tried formula, started pumping, but all to no avail. Lily’s blood sugar was in the low 30s when she was admitted and she was immediately put on a bilirubin bed. My milk came in as I was sitting on the gurney with her in the ER, my breasts burning hot and filling with milk as they tried for over an hour to place an IV in her tiny, dehydrated veins. I sobbed and sobbed, because I felt as though I had let her down. I couldn’t figure out how to feed her in time.

A day after she was admitted to the hospital, we still didn’t know what was wrong with her, but I was taken from DuPont by ambulance to Christiana Hospital for postpartum preeclampsia. I called Katie from my hospital bed, crying and frantic because I didn’t know what to do. Should I keep pumping? Is the magnesium sulfate going to affect my milk? How many times to pump? Would Lily learn to eat? Katie immediately reassured me and made me feel like somebody was listening to all my fears and taking me seriously. We came up with a plan for my pumping and she made me feel so relaxed with her statement, “Feed the baby, protect the supply”. I could do that. Lily was receiving IV fluids and I was pumping. We could survive this.

For the next three days, I was in the hospital on mag sulfate and blood pressure medicine. I pumped constantly. Every three hours, around the clock, I pumped. All I could do to help my baby was pump. When the mag made me lose control of my arms, my husband held the bottles to my chest. I say this not to make myself to sound like a martyr, but to illustrate my franticness and my determination that as long as I could make milk, she would survive.

When I was released from the hospital, I was finally reunited with Lily and my mom and aunt who had been caring for her while I was sick. Within an hour of seeing her, the geneticist came in and gave a name to all the questions in our head. Rubinstein-Taybi Syndrome. The finality of the diagnosis was startling. That was it. It’s over. We are definitely parents of a special needs child. However, it was freeing in a way, because now we could just focus on getting Lily healthy. And that meant getting her to eat.

They gave her about a week in the hospital to learn to eat on her own. We saw feeding specialists every day, but Lily still wouldn’t wake up to eat. She wouldn’t even try. She was eating about 15 ml, or half an ounce, A DAY on her own. IVs were what were keeping her alive.  After that didn’t work, we decided to put a feeding tube in. A nasogastric tube was threaded through her nose and she got a chance to drink from a bottle at each feed and if she didn’t take 60 ml (which she never did) we had to hook her up to a pump and give her the rest of the breast milk that way. After a few days of this, Lily turned the corner. First 30, then 35, 40, 45, 50 ml a feed by mouth! She was doing it! We were supplementing her breast milk with formula so she would get as many calories as possible.

She came home after 16 days with her feeding tube. Now it was up to me to be her mom again. I was thrilled. The feeding tube saved her life, but it made me focus on how much she was eating in an almost obsessive way. Every two hours, I’d pump, store the milk, wash the bottles, mix up her supplemented bottles, and then spend about 45 minutes watching her drink drop by drop. She had to take all 60 ml or we would syringe her the rest of the milk. This is where I started to fixate so much on the numbers. Those numbers had previously meant whether or not she’d get to leave the hospital. While it was certainly important to make sure she was eating enough, modern medicine had decided to focus only on cold hard (arbitrary) quantitative data. A nutritionist determined Lily needed to eat 60 mLs every two hours and only take 20 minutes to do so. If she ate 59 mL, or ate every 2 hours and 15 minutes or spent 30 minutes eating, that feeding was considered “bad”, “calorie wasting”, “lazy”, or “dangerous”. Yes, all of this was said to me. So, there I was, a brand new mom with a brand new diagnosis trying desperately to follow our team’s medical advice when all I wanted to do was feed my baby.

I was so self-conscious of her feeding tube. People would point, stare, ask intrusive questions, and whisper about us in checkout line. However, after repeating one of Katie’s mantras over and over, “Feed the baby, protect the supply,” I relaxed and started to take pride in the way I fed her, as all moms should. I was doing everything possible to make sure my baby ate, and if that required pumping, formula, and piles of syringes, pH strips, and a feeding tube surgitaped to her face, then so be it. She was EATING.

I would still agonize over every DROP of milk she was or wasn’t getting. However, after a couple of days, my mommy instincts started to kick in. Something didn’t seem right. Lily isn’t a computer or a machine. Her needs varied by the day, by the minute. We weren’t able to keep their insane schedule and soon I found myself not wanting to. Doctors insisted that she needed 60 mL. However, every feeding she’d drink 45 mL and then drift off to sleep, milk spilling out of her tiny mouth. According to them, I was then supposed to put 15 more mLs down her tube. Whenever I’d do that, though, she’d throw up!!!!

After talking with Katie and getting Lily weighed, we found out she was gaining weight. A lot, in fact.  I was so afraid of doctors looking over my shoulder and feeling so ashamed that I couldn’t feed her from my breasts, but with a bottle and a tube, that I had forgotten to pay attention to Lily.

This happy, wriggling, beautiful baby that needed me to stand up for her uniqueness and autonomy.  

I started to watch her, not the mLs.  I started putting her milk into unmarked bottles so I couldn’t obsess over numbers. Numbers didn’t matter. She did. Was she peeing, pooping, sleeping,  and happy? Yes, so stop feeding Lily to make the doctors happy, feed Lily to make Lily happy!  I know that sounds so simple, but it took us about 3 months to get to that point.

They weren’t mothering my daughter, I was. Once I took ownership of that, we both started to thrive.

The feeding tube came out after a month. I found out after we left the hospital that her doctors had said that she would NEVER be without the tube, that she’d need a G tube surgically implanted, that she was incapable of nursing. Who has the audacity to say the word NEVER about a 3 week old baby? They needed to help us believe in her, but they were too focused on what a textbook said SHOULD happen.  Katie took such good care of me after every bit of my confidence had been shattered by careless words, a couple of photocopied handouts, and a dire rundown of a disease last studied in the 1970s. Slowly, we let Lily learn about her own body and develop her own hunger cues. I watched Lily for signs of hunger, not the clock. I stopped feeding the freezer, started feeding my child.

Today, Lily nurses great. She screams her head off when she wants to eat, latches immediately, and gulps down milk until her tummy is full and she’s calm. We nurse all over the place; story time at the library, restaurants, the Liberty Bell, highway rest stops, even walking up and down the aisle of a grocery store. Hey, Mama needed food, too! After having everyone stare at her feeding tube, having the occasional person stare at my boobs doesn’t faze me. I FINALLY feel like I’m doing this right thing. I realize that I’m the expert on my baby. Not even my husband can match my intimate knowledge of Lily.

I’ve started to learn to trust myself, my breasts, and most importantly, Lily.

                  We’ve moved to Pittsburgh and because of her disorder, we’ve started meeting with all her new doctors. Lily is still small; she always will be because of her Rubinstein-Taybi syndrome. She’s 6 months old and is just under 12 lbs. I carry around her medical file with us to all her new appointments and at about 8 inches thick, I joke that it weighs more than her. But that’s the thing, I can joke now. Recently, at an appointment with a new doctor who we hadn’t seen before, the nurse measured and weighed her and plotted the data on a chart. Understandably, she freaked out, because Lily is about 1.6 percentile for her weight. The doctor came in and started talking about tests, enzyme disorders, and supplementation. I calmly listened, kissing Lily’s cheek and just feeling baby softness, not trying to judge the layer of fat underneath

I explained her condition to the doctor and reassured HIM that she was growing just fine.

And, I realized, so was I.

Notes from Katie Madden:

Katie’s story is heartbreaking and inspirational.  I don’t like to take credit for a mom and baby’s breastfeeding success; it isn’t me that gets up and nurses at 2am.  But, Katie & Lilly’s story is one of my proudest.  Katie painted an amazing picture of what happened from the moment of Lily’s birth, but I want to fill in a few gaps that she skipped over.

Katie’s right. She fed the baby and protected her supply. In fact, all that frantic pumping in the early days left Katie with a really ample supply of milk!  It took Katie a lot of confidence to believe that Lily could bottle feed without needing the NG tube.  She proved it to the doctors without forcing a set number down Lily’s throat. She just followed Lily. And here is the element Katie skimmed over:  She started trusting Lily.

Booby baggage often leaves you mistrusting your body or mistrusting your baby.  I talked about mistrusting your body, perhaps because it has let you down so many times in the past.  Katie couldn’t trust Lily for a really long time.  In those early days of life, when Lily was supposed to show feeding cues, wake up and drink enough from the breast, she simple didn’t.  She basically let herself starve.  Luckily, Katie and her husband were vigilant parents who listened to their intuition. They knew something was wrong.

But how do you ever again trust a baby who almost let herself die?

I see this a lot with breastfeeding moms whose babies lost a lot of weight in the early days or weeks. The crippling fear of finding out that, despite your best breastfeeding efforts, your baby didn’t let you know that she was hungry is often insurmountable. I call this baby “content to starve.”  She doesn’t hold up her end of the bargain. It is understandable why women have a knee jerk reaction to this fear—they would rather quit breastfeeding altogether and give formula if it means they will never have feel that fear of losing the most important thing in their life again.

BUT. The content to starve baby isn’t always a content to starve baby.  She was just so little and so sleepy in those early days. Perhaps she was jaundice and that was what was preventing her from showing hunger cues.  Once you get her up our of that rut and back to her “fighting weight” as I like to call it, you have a whole new baby on your hands.

Doesn’t your child deserve a second chance?

Once Lily had a label, every doctor she met thought he “knew” her.  She was no longer Lily.  She was that baby with Ruebenstein-Taybi Syndrome.  That very very rare genetic disorder that they read about in their textbooks in med school, but never got the chance to see in their practice.  That diagnoses that yields short-stature, poor feeding habits, the need for a permanent, surgically placed feeding tube in her stomach. She cannot regulate her own feeding habits. She will miss developmental milestones.

She will never be able to breastfeed.

When Katie was brave enough to step foot in my office and say, “I want to breastfeed Lily,” she was giving Lily a second chance. So, of course, I gave Lily a second chance too. I said to Katie, “let’s take this slow, but we are going to treat Lily like a Lily baby rather that an RTS baby until she proves otherwise.”

So, we did.  Lily never disappointed us. We asked a lot of Lily.  She now had to work harder to get her milk. She had to manage her mama’s overflowing milk supply.  She had to let her mama know when she needed to eat and she needed to eat the right amount.  She did all of these things and more.

Can I stop here for a second. Have you caught this theme in almost everything I write?

Breastfeeding is a metaphor for parenting.

If your child failed to meet your expectations in anything in life, wouldn’t you give her a second chance?

Despite your fear of feeling the pain that comes along with watching your child struggle and fail, you must give her another chance to prove herself. And then another. And then another.  And if you keep believing in her, you will instill in her the confidence to achieve anything.

Never will Katie expect anything less than everything from Lily.

But, never again should Katie accept anything less than everything from herself either.

My last reflection on Katie and Lily’s story comes from the very last day Katie and Lily came to breastfeeding support group before packing up and heading home to the loving arms of family and friends in Pittsburg.  For months, Katie and Lily came to support group and Lily’s diagnosis was our secret.  Katie shared with the group a few times that Lily “got a rough start” or that she “had some feeding issues.”  Not one time did Katie let the group know of Lily’s diagnosis.

Then. At the very last group, Katie held her head high and told her whole story.  She named Lily’s disorder, she bragged about how far she and Lily had come. She declared that she would be Lily’s advocate in Pittsburg and for the rest of her life.  If you happened to have been lucky enough to have been at that group, you would have seen the transformation of a mother. It was magical. We felt the energy shift around us.

As mothers, we can only hope to have a fraction Katie’s strength, stamina and perseverance. We can only hope to have a scrap of the faith in our children that Katie has in her own little Lily.

Bear the weight of booby baggage, whatever that may be for you, and trust in your child enough to give her a second chance. Because only then can we truly let our children reach their highest potential.