While Lilly continued to push away the bottle in favor of the pacifier throughout the day, her interest in pureed food is heightening. She’s over the squeeze pouch–probably because it’s a little too hard for her to use and sometimes too much comes out since I’m quickly trying to squeeze it just at the moment her jerky movements bring it to her mouth. But the Austria team had some new tips for us and by the end of the day, she was eating off a spoon! And I mean eating! Spoonful after spoonful. It’s as if she’s starting to make the connection between eating and satiating that strange new uncomfortable feeling she’s been having. I don’t want to get too excited–these things fluctuate day by day (a few days ago she was willing to sip from the bottle, sigh). But seeing my little baby covered in sweet potato and knowing just as much got in her mouth was a very happy sight for this mama!
When Lillian was on a ventilator, we couldn’t hold her in our arms when she cried, and we couldn’t put her to my breast when she was rooting for nourishment. The nurses showed us other ways to comfort her–cupping her head and feet in our hands through the isolette like a “hug,” inserting our thumb carefully into her mouth (avoiding the tubes) to satisfy her need to suck. Research has revealed that newborns can pick out the scent of their mother’s milk. Even with a breathing support apparatus blocking her nose, Lillian used to wake up when I was pumping across the room from her and root and then cry until I put my thumb into her mouth. She had an instinct to eat just like any other newborn, and I have wished so many times that the hospital staff had done more to hold that instinct in tact while she healed. It’s an important aspect of neonatal medicine which must be advanced. While I’m tremendously thankful that the hospital staff saved our daughter’s life, it was a cruel and unexpected twist to have her handed back to us unable to eat. They talked us into a g-tube as an option to allow her time to learn, and instead it killed any motivation she had by causing her to vomit constantly and feel uncomfortably full all the time.
A few days into Lillian’s hospital stay, an opinionated night nurse pulled out a pacifier to calm Lillian with. I asked her not to, mindful of the common advice to avoid pacifiers until breastfeeding is well established. She waved that off; she didn’t have time to stand there with her thumb in my baby’s mouth like I did. Reluctantly, I relented, giving her permission to use it as a last resort. The pacifier soon became the hospital staff’s first resort for calming Lillian, and a tool Dave and I came to rely on as well. So a few weeks later, when we could hold Lillian and had the green light to feed her, I died inside each time I watched Lillian scream her head off at my breast only to be soothed instantly by the pacifier. She wasn’t quite as adverse to the bottle yet, but still preferred to leave her sucking for the pacifier. Later when she did develop an aversion to the bottle, it was the same story. Scream at the bottle, suck happily at the paci. I came to loathe the sight of that stupid orange silicone pacifier, which for me has come to symbolize everything I didn’t want for my baby but got instead. Nursing, eating, even the cute pink and purple glow-in-the-dark orthodontic pacifiers I picked out on her registry–replaced by that stupid hospital-issue orange thing. I’ve had lactation consultants tell me the pacifier was medically necessary for Lillian, I’ve had feeding therapists tell me it preserved her ability to suck, and I’ve used it to bring my baby back from crying fits that has no end, so, yes, I have come to have some appreciation for it.
But today as I watched Lillian cry when I offered her the bottle, cry until I gave in and gave her the pacifier, and then cry again when I tried to sneak the paci out and the bottle in, my old paci hatred is back. The Austria experts say it will take some time for Lillian to connect eating with satisfying her feelings of hunger. So the first step is to let Lillian explore and discover food as we induce hunger by reducing her tube feeds. But how can she start making the connection if she won’t explore the food and insists on sucking the paci instead?
Lillian turned 5 months old today, and it’s come with a definite desire for greater independence. She doesn’t want to do the same old thing. She wants a challenge. The bottle is becoming old news to her. She still likes the attention she gets when she actually takes drinks from it, but she’s also bored of it. And when she tired or cranky, forget about it.
She’s interested in eating and the pureed food we’ve just recently introduced to her, but she’s wary of anything going in her mouth that she didn’t put there herself. No mama, she says with the pushes of her hands and the turning of her face, you don’t help; I got this. Her distrust when it comes to her mouth and face is understandable given what she’s been through in her early days of life–head held down while unpleasant tubes were stuffed down her throat and taped to her face. Enter baby food pouches. We picked up a couple from the store and I demonstrated how to bring the opening to my mouth and eat the food. She was up for the challenge and caught on quickly. She is at times overwhelmed by the amount of food that squeezes into her mouth because I’m trying to help her get it out while she squirms and doesn’t want me involved. But overall, the experience is positive and seems to give us a new tool to try.
Meanwhile, Dave and I are amazed by how much easier life is without the constant vomiting. We can let Lillian play on her back after she’s eaten. We can change her diaper. We can put her in the car. We can put clothes on her (and us) without fear that they will soon be covered in puke (although they may soon be coveted in pear puree). She can suck her pacifier without fear of gagging. It’s a revelation! Up until now, anything we heard of that could help reflux, we tried for Lillian–eliminating cow’s milk, soy, corn, and gluten from my diet; proton pump inhibitors (off that now, thank God); cranial sacral therapy; reflux wedge; holding her upright during and after feeds; even biofeedback. But nothing seemed to help. The experts in Austria contend that vomiting is a side effect of tube feeding and it commonly goes away almost immediately during the weaning process. That has certainly been our experience so far.
After all the crying yesterday, my heart exhaled when my baby woke up and smiled her adorable smile at me. Over night I had received answers to my questions and new tips from Austria, so with those 2 reinforcements, I was ready to try again for another day. I was rewarded throughout the morning by Lillian sucking briefly from the bottle, taking more milk drips than usual, trying a sippy cup, trying apple puree, and offering more smiles and even some giggles throughout. She was apprehensive–often swatting at my hands as I approached her mouth with food or milk–but adventurous–opening her mouth and letting it in–at the same time as she tested out these new wonders. And she seemed very proud of herself. Eating was a fun game again.
When I reported a few days ago that Lillian wasn’t napping, the Austria team preached patience, assuring me it was a necessary part of the process for Lillian’s biorhythms to reset from the artificial schedule imposed by her tube feeds to her own natural sleep/wake/hunger/satiate cycle. Well, today Lillian’s biorhythms seem to be adjusting because she is submitting to sleep when she’s tired (for the most part).
So all was going well until 3:00 hit and Lillian woke up after a short doze but refused food even though she was cuing hunger and still looked sleepy but wouldn’t go back to sleep. A short while later we were back to the screaming. She finally took another nap after her reduced bolus feed kicked in but woke up dazed, grumpy, and still refusing food. Her weight, which had dropped about 28 grams so far, all the sudden dropped almost 50 grams in one day. What were we thinking cutting food to a baby who just a month back was labeled failure to thrive? I guess we were thinking since it was tube feeding that led to the difficulty gaining weight these many months, temporary weight loss was worth the opportunity for a lifetime of healthy weight gain. But the numbers still strike fear in my heart.
By the end of the day, both Lillian and I were beside ourselves. We have both cried our eyes out. We are both exhausted and pushed to our limit. Lillian has been awake all but 2 of the last 13 hours. She’s too hungry to sleep, too tired to eat, and cries when I put her down. I offer food, she refuses. We both cry. I offer sleep, she refuses. She plays manically, I alternate between joining her and crying. I have flashbacks to similar screaming episodes in the hospital when Lillian stubbornly refused food and we gave in and got her a g-tube so we could just finally take her home.
These days, people who encounter Lillian comment on her amazing temperament. And it is true–she is a pretty happy, content baby who’s a joy to be around–until you piss her off. In these post-hospital days now that Dave and I have settled into parenthood and Lillian has settled bravely into the discomforts of the feeding tube, Lillian is not often pissed off. But in those hospital days, oh boy. Let’s just say, she had a reputation among the hospital staff.
So I am seeing all the hard work we’ve done to get Lillian’s world right come tumbling down and am terrified about the repercussions. I’m also panicking because the net coaching program is not offering the support I was expecting. They initially told us the first few days would not be a big deal, that they would go at our pace, and that their program offered psychological support for parents. So it surprised me how little instruction or preparation I got for starting the program. Naively, I assumed all would be fine and went for it. I was totally unprepared to watch my daughter cry inconsolably in hunger and exhaustion, neither of us with the tools to get her out of it. Meanwhile it was nighttime in Austria, so all I had from them was “be patient,” “stay relaxed,” advice to try that I was already doing, and radio silence.
I’m ready to give up.
Ever since we got home from the hospital, Lilly and I have been going to feeding therapy weekly and practicing daily. A couple months back, Lillian had a breakthrough. She went from crying at the sight of the bottle to letting us use it to put drops of milk in her mouth and even swallowing them. We all got excited and waited for it to build. But it didn’t. Instead it seemed to taper off. And I began to notice something–Lillian was drinking her milk drops for us. She liked the antics and sucking noises we made while she did it. She liked the excitement in our voices when we praised her for it. She liked to show off when she had an audience, doing it longer for a crowd than when it was just mama alone. She was playing a game–the “ba ba” game (what we call her bottle)–just like she plays the “where’s Lilly” game. A sinking feeling started to come over me–what would ever motivate her to drink longer than it took for her to tire of the game? Especially when being fed through her tube was associated with discomfort for her. And yet, it was important to stop the ba ba game when Lillian wanted to–that’s how we got her over her bottle aversion in the first place.
That’s why discovering the Graz approach made so much sense. Their approach is based on the idea that hunger is necessary to motivate tube dependent babies and children to eat orally. They believe that except in certain severe cases, feeding tubes should be a temporary measure to support nutrition when there’s an acute medical reason a child can’t eat. However, all too often, children with feeding tubes become tube dependent–getting used letting the tube do their “eating” and muting the instinct or motivation to do it for themselves. Just as Lillian was once dependent on morphine to manage her discomfort from the breathing support she was on and needed to be weaned slowly off of it once she didn’t need it any more, Lillian needs to be weaned from her tube if she’s to overcome her dependency on the way of feeding that’s sustained her since birth.
Our support team in Austria watched a video of Lillian drinking from the bottle yesterday morning and confirmed my suspicion–she is playing and doesn’t truly seem motivated by hunger yet.
Our dog Mac has developed a behavior of standing under Lillian any time she’s hooked to the feeding pump and crying. He knows he’s in for some free food when she inevitably vomits (dogs are gross, what can I say). He’s become our clean up man. But he may be out of a job, because I’m pretty sure today is the first day of Lillian’s life that she didn’t vomit even once. (Okay, she didn’t vomit back when she had a ventilation tube blocking her throat and was on IV nutrition, but you know what I mean).
Her doctors call all this vomiting a laundry problem (except when they’re hounding us to put more weight on her), but as a mother, watching my child’s face turn beet red and seeing her entire body heave and wretch, hearing her gagging and vomit in bed almost every morning as the first sound, is torturous each and every time it happens, many, many times a day. Hearing her cry at the end of feeds as her belly became uncomfortably full, I started to feel like torturing my own child. That was my primary motivation for wanting to find a better way–we couldn’t get through a feed anymore without either crying or vomiting or both. I couldn’t bear putting her through that for another year and a half–the amount of time her gastroenterologist predicts she’ll be on the tube.
And yet, it’s also disturbing to watch my child cry in hunger and not know how to satisfy it, as happened today. And it’s hard to see the number on the baby scale go down 28 grams today, knowing how much Dave, Lilly, and I sacrificed to force those grams into her little body in the first place. But these disturbances are temporary pain necessary to achieve what will be a lifelong gain.
A part of me fears that there’s some unknown reason Lillian can’t eat, whatever it was–reflux? allergy to components of my breast milk? temperament? maternal incompetence?–that kept her from eating when we tried over and over to feed her in hospital. As she screamed in my arms today but refused the bottle, I had flashbacks of all those moments in the hospital and the early days of being home. But our tube weaning net coach assures me that Lillian will learn to eat and that I do not need to be concerned – “she is a perfect developed baby.” Reading those words brought tears to my eyes because they feel true, and that’s such a relief. The most logical explanation for why Lillian didn’t eat (and actually she did eat, just not enough) is that she was already being fed–through a tube.
When Lillian hit the wall at the end of the day today and was crying in absolute distress–from hunger? From exhaustion from skipping all her naps because she’s used to sleeping on a full belly (good-bye to showering for me!)? From the vaccination she got yesterday that by the looks of her diaper upset her tummy? From teething pain? From all of the above?–a sucking instinct kicked in. At the moment it happened I was putting her to bed and had just hooked her up to the feeding pump and only had a pacifier to give her, no bottle. But I have a hopeful little feeling that if the bottle had been there, she would have taken it. There are probably plenty of tough and worrisome moments ahead in the process of finding out, but there’s also that little nugget of hope–Lillian’s sucking instinct is alive and well.
What a big day for Lillian! I know that’s the case when I was telling her dad about her day and forgot to mention she sat independently for several seconds and rolled from her back to her side several times. That’s because today was the first day of Lillian’s tube wean. It’s the first day since being out of the hospital when she has experienced hunger and been expected to do something about it for herself.
Throughout the day, she had moments of normalcy, and moments when she seemed overwhelmed by the unfamiliarity of what she was experiencing. Particularly as she sat at the dinner table with her grandparents and I, she seemed overwhelmed by the sights and smells of the food and her urges to satisfy her hunger. She watched us eating and drinking intently, grabbed for our plates, and chomped on her bottle nipple when I offered it. She’s done all these things before, but out of curiosity, while today there was a new sense of urgency.
As her mom, it’s hard watching her struggle with what to do but not being able to help. I wish I could just do it for her, but I guess that’s not what parenthood is about!
And mind you, Lillian is still getting tube feeds. Just not the volume she’s used to.
What’s so strange for me is the thought that even though Lillian is almost 5 months old, I have know idea how to feed my child. I mean, I know how to pump enough milk to feed 2 of her, how to troubleshoot any problem with her feeding pump, how to hold her just right during a feed, and how to flush her tube one handed without waking her up. I know her complicated tube schedule by heart. But what I don’t know is how and when she’ll want to eat when it’s actually up to her. We shall see!