A Year of Tube-Free Eating

Today marks the one year anniversary of Lillian’s tube wean.  And what an amazing year it has been!  The days since Lilly’s wean have been as filled with light and happiness as the days before her wean were filled with darkness and struggle.  The wean switched on a light in our lives, freeing Lilly from her suffering, and allowing her to be the happy, carefree little girl she was always meant to be.

She loves eating–cherry tomatoes, Zing bars, cheese, and Homegrown sandwiches are some of her favorite foods.  A couple weeks ago, she stopped accepting broken off pieces of Dave and my sandwiches during our weekly trips to Homegrown and now demands her own sandwich which she insists on eating like we do (pictured above).  Today when I got home from work, she asked for an avocado and proceed to eat the whole thing except a couple slices that she shared with me (and one she squished because that’s just fun), and then did the same with a whole peach.

Lillian has also enjoyed her bottles of milk this past year, but is going through another wean on that front.  I stopped pumping a few months ago and we have rapidly gone through our supply of frozen milk.  She has rejected any mama’s milk substitutes other than water, so she’s begrudgingly accepting tapered off access to milk (a couple ounces before nap and bed), which will come to an end in a week or two.  But as a result, her appetite and enthusiasm for solid food has increased dramatically, and she seems to have actually gained a little weight (according to the mama carry test) as her milk volume has decreased.  Like the other weans we’ve been though, this one has been tough on her at times but she’s adapting well.

Overall Lillian has been in superb health this past year.  She’s almost never sick, and while she was a little behind on gross motor skills because of the tube feeding and reflux, she has caught up there and is ahead of the curve on all other developmental milestones (her vocabulary is amazing–especially the number of foods she can ask for by name!).

Lillian is still a small little thing–at 17 months she hasn’t yet reached 20 lbs.  But more or less, she’s held her growth curves (slipping at times and then either maintaining or regaining ground).  Because of that, and how well she’s doing on her milestones and health indicators, her doctor isn’t worried in the least, and we’ve been off the emotional pressure cooker of failure to thrive watch for some time now.  I have a couple theories about why she’s so small–1) that the worst of her tube feeding/weight gain struggles happened during those formative first few months when babies usually pack on the pounds, 2) that she may have genetically high metabolism (in his twenties, my husband was one of those legendary people who could eat whole pizzas and a bakers dozen tacos and still be skin and bones), 3) that she eats less junk food than the average kids on the charts who determine those averages (pretty much no junk food at all in fact–she just doesn’t care for it on the rare occasions it’s offered to her).  But those are just theories, and we’ll never know what would have been if she had a different history.  So, I look for slim cut toddler clothes, and do my best not to stress about it.  With a kiddo as joyful and precocious as Lilly to hug and kiss every day, she makes it easy to leave those old worries behind and focus on the positive:)

Three months later part 2–tube-free living begins

This morning, for the first day of her life, Lillian woke up with no tubes. Yesterday, three months and two days after her last tube feed, she underwent the procedure to have her g-tube removed. She is eight months old. It seems like it took a painfully long time to be free from the repercussions of an otherwise healthy, full-term baby experiencing a difficult birth. But the more we talk to friends and medical professionals about tube feeding experiences, the more we learn how rare it is for tube-fed babies to escape tube feeding. Typically it takes years. We didn’t know that when we first consented to Lillian’s g-tube placement. We were so battle-weary, and living in the hospital (which is not at all designed for families to be together) was so unsustainable, that we just grasped at what seemed like the only option. And to this day, I’m not sure what else we could have done to avoid the g-tube other than staying at the hospital, transferring to another hospital, or somehow getting permission to transfer our ng-tube fed one-month-old to Austria. But I can say emphatically there should be another option. In retrospect there was no reason Lillian couldn’t have learned to eat orally as soon as she was healthy enough to do it. That’s what they would do with a baby like Lillian (or even a baby with ongoing health issues, which Lillian didn’t have) at the University Hospital in Graz, Austria. The same protocol should be widely used in the United States. Tube feeding kept Lillian alive when she needed it, but sustaining it after she didn’t kept her from developing normally, caused her terrible discomfort, and horribly degraded the quality of life for our whole family. Perhaps other babies and families are better able to cope with tube feeding, but none would suggest it’s the best first option unless it’s a medical necessity. The American medical industry ought to wake up to that reality and standardize a tube weaning protocol in neonatal care.

As for our family, our future is incredibly bright, and we are so thankful. As the difficult realities of Lillian’s tube feeding days fade to memory, our day-to-day experiences are filled with a sense of awe at the ease and freedom of our new tube-free life. When I talk with other parents of infants, I notice Dave and I have a completely different perspective on the day-to-day trials of parenthood. We revel in experiences like getting up to rock Lillian in her cozy white rocking chair at 3:00 a.m. when she wakes up wanting to take a bottle. We spent our first weeks with her separated from her at night, starting each morning by asking the night nurse how she did.  When I did spend nights with Lillian in the hospital, I was awakened by monitor alarms, nurses coming in every three hours, and my alarm going off reminding me to pump, not by my sweet baby needing me.  When Lillian was home with us we spent nights with her hooked to a feeding pump, not being able to pick her up and rock her if we wanted to, and we woke in the wee hours of every morning to the horrible sound of her vomiting.  Even yesterday, after watching Lillian fight and cry as the anesthesiology mask was placed over her nose and mouth for the tube removal procedure and then convulse and begin to lose consciousness, the kind nurse said sympathetically that it’s a difficult scene to watch. And it was, but I’ve seen my baby go through a lot worse, over and over again, and I am so hopeful and relieved that those days are behind us.

Lillian is thriving as a “normal” baby, and I think it’s in part because she remembers, in whatever subconscious way that babies “remember,” how hard and painful life can be, and is so happy to be free of all that.  As a mother, I agonized over the loss of opportunity to bond with my new baby when she had to be taken from me moments after her arrival, when we spent so many hours and nights apart during the early days of our recoveries, when I couldn’t hold her in my arms for her first week, and when we lost forever the opportunity to share breastfeeding.  But I see now that we found our own, perhaps deeper way of bonding. I was, and am still, so determined to make up for lost time with her.  I rarely think in terms of needing a break (which is perfectly normal for mothers to think about) and instead think in terms of needing to capture every precious moment with my baby.  When I sat in Lillian’s hospital room in her first weeks of life, often being displaced from her bedside by hospital personnel with a job to do, often set up across the room from her to pump her milk, I used to feel troubled that Lillian likely had no realization that I was her mother, or even what a mother or a home was. There was nothing in her early reality to establish such concepts for her. If you look at Lillian interact with Dave and I now, it’s plain to see she has bonded with us and understands we’re her “mama” and “dada,” (as she says) and with us is where she belongs. If you were to ask Lillian what parents are, and she had the maturity and language skills to answer, she would say they’re who you need with you when things are difficult because they help you feel safe. That’s the bond we’ve developed out of all this. But the happy prologue is that Lillian would also say parents are people who you get to laugh and have fun and go places with. We’ve gotten to do a lot more of that over the last three months, and we’re looking forward to even more of that in our tube-free life together.

3 months later-some downs, some ups

It’s three months exactly from the day Lilly and I started her wean.  She’s doing wonderful!  In three months she has transformed into a completely different baby.  Three months ago, she was a baby who vomited five or more times a day, cried through feedings, and could barely leave the house as we were hooked to a feeding tube all the time.  Life wasn’t good back then.  We made the best of it and were thankful for our little girl, but we were struggling and we weren’t enjoying life.  Today, Lillian is happy, healthy, and social.  She drinks milk happily, begs to eat anything I’m eating, never vomits, and is easy to take places.  She has even graduated from her reflux wedge and sleeping flat like a normal baby.  Her confidence level is remarkably different.  At four months, she would cry if anyone other than mom, dad, or grandmas held her.  She wasn’t used to seeing other people!  Now at seven months, she “talks” to people, smiles at them, and lets people she doesn’t know hold her.  When I take her to baby yoga or music class, she rolls away from me (she’s not crawling yet) and visits other babies and parents without looking back.

We have had a few setbacks since the last update.  First, a couple weeks after I returned to work, sickness cycled through our household and Lillian caught a bad cold, just the second in her life.  She continued taking bottles throughout, but her volumes went down.  She lost weight, which was to be expected.  But then two weeks went by without her regaining it.  I started to worry, but just when I was really starting to panic, she finally rebounded.  At her seven month weight check, she was back on her growth curve.  What was interesting about contrasting colds while tube feeding compared bottle feeding is that even though we artificially kept her volumes up with tube feedings, she still lost weight during her first cold.  Because she vomited even more than usual.  During her cold while being bottle fed, she never vomited.  She seemed to instinctually know how much to take in to stay hydrated without overwhelming her system.  The weight outcome was pretty much the same.

Just as we were recovering from Lilly’s big cold, the her tube site got infected.  Suddenly, her tube wasn’t just a benign inconvenience we tucked into her cloths and didn’t use.  It became a serious health threat.  Lillian was miserable from the discomfort, not wanting to roll on her tummy or be held up with her tummy against our bodies, and she unleashed a screaming crying when we cleaned it.  She was on antibiotics for several days with no improvement, although luckily the infection didn’t spread and she never developed a fever.  Finally we brought her into her gastroenterologist’s office to have the infection looked at.  He confirmed it wasn’t responding to antibiotics, declared it was likely an antibiotic-resistant staph infection, and prescribed a different antibiotic.  Now over a week past her last antibiotic dose, and even with several doses of probiotics a day, her digestion still hasn’t recovered from the two courses of antibiotics.  But the silver lining is that while she was at her gastroenterologist’s, he confirmed Lilly had met the requirements to get her tube out and put in the order.  The procedure is scheduled for November 22nd.  So just another week and a half from now, Lillian’s tube feeding days will truly be behind us.

Week 6–Tube wean complete and baby-led weaning

Our Austrian coaching services officially came to an end this week.  Not that Lillian has really needed coaching these days, but our services through No Tube extended until 35 days after Lillian’s last tube feed, which was on August 20, 2016.  Lillian is officially weaned, and there seems to be no looking back.  Dave and I were talking today about how her tube feeding days are starting to remind us of her breathing tube days–a distant memory (though all to vivid and real) of a baby who barely resembles the one in front of us now.  In fact, the baby in front of us now tasted scallops at dinner with us tonight!  (You can’t see the scallop in her hand in the picture above through all the avocado mush, but it’s what she’s putting in her mouth).

I’ve started reading Baby-Led Weaning by Gill Rapley and Tracey Murkett.  It was suggested by Lillian’s local feeding therapist and is a natural extension of the philosophies behind the Graz tube weaning method which puts eating in the control of the baby or child.  While Lillian likes eating from a spoon a whole lot better than she liked being fed through her tube, she likes trying “our” food even more.  Every morning I drink a green smoothie.  She has watched me do this for six months and now begs to drink it too.  When I let her experiment with it, she licks the glass and takes sips when I tilt some towards her.  But seeing her pick up half a scallop, which Dave took from his own dinner plate and put in front of her, and lick and taste while we ate dinner was just priceless.  She is definitely our little eater now!

Dave and I have been worried about a decline in Lillian’s milk intake over the past several weeks.  During that time, her weight gain seemed to plateau.  But over the weekend, her appetite for milk picked up again and for several days in row she’s been drinking volumes more like her previous highs.  And looking at the numbers, even through what looked like a weight gain plateau, for the last three weeks she’s managed to gain an average of almost ten grams a day, which is considered pretty typical weight gain for a baby her age.  So while she’s not continuing to do the catch up growth we were hoping for, she’s doing enough to stay on her current growth curve if she keeps this up.  Given how happy and healthy she is–we’ll take it!

Week 5, part 2–making weight & playing catch up

Two big events happened in our household this week.  First, I went back to work, and, second, Lillian had her six month check-up.  We got good news at Lillian’s check-up.  Lillian has climbed back up to the highest weight growth curve she was able to maintain during her g-tube days: the 5-10 percentile.  We had her weight checked with her pediatrician just after she finished her wean and was exclusively bottle feeding.  At that point, she had dropped to the 2nd percentile for weight.  Since then, she’s grown 2 cm (new pants size!) and gained over a pound.  She stayed on her established growth curves for height (<50%) and head circumference (> 25%).  Her doctor was so happy for her and for us.  If we can maintain these growth curves for two more months, Lillian can get her tube out, and we will be assured her tube feeding days are forever behind her.

But having to “make weight” in two months puts all the more pressure on making sure my transition back to work is as smooth and easy for Lillian as possible.  So far it has gone as well as could be expected.  Helping Lillian through the transition are a number of factors.  First, I’m taking advantage of being grandfathered into a now-eliminated policy at my work that allowed my unpaid family medical leave protection to kick in after I’d used all my banked paid leave time (which I had a lot of from saving carefully over 15 years).  I’m using this protection to work 50% time until the leave runs out, something my employers likely wouldn’t have allowed otherwise.  Second, I have made sure she’s spent a lot of time with her grandparents, who will be taking care of her while I work part time.  And third, Dave took some time off this week to help her through the first week.

Mostly, Lillian has done well.  She’s been happy (the picture above is of Lillian on a walk with my mom while I was working) and has stayed on her nap schedule and gotten plenty of sleep.  Big wins!  But she’s definitely showed signs of missing me when I return home.  I used to get jealous that as soon as Dave walked in the door at the end of the day, Lillian held her arms out to him and made whining noises until he picked her up.  For the next hour, she made her dismay known if he set her down or left her sight.  Well, now she does that for me too.

What worries me the most, though, are that her eating volumes have dropped.  Being the number nerd analyst that I am, I have actually analyzed the data.  On the five week days I was home with Lillian last week, she drank an average of 381 mL of milk by noon, which is around when she goes down for her second nap of the day.  My transitional work schedule has me arriving home around when she wakes from that nap.  I asked her care givers to aim to get her around 400 mL by that point, and while I know they tried, they averaged 298 mL in their four days with her this week.  For Lillian, that’s the equivalent of a full feeding window.  Each afternoon and evening, I worked to close the gap.  And I was able to close it by about half but not completely.  Her daily total volume last week was 784 mL, compared to 746 mL this week.  These numbers may not seem that far apart, but her growth had slowed down on the 784 mL volume.  So any drop, especially one that continues day after day, is discouraging for the overall direction we’re trying to go with Lillian.

The drop in eating volumes also took an emotional toll on me.  Mommy guilt for going back to work.  Mommy worry over my skinny baby.  Yesterday at 5:00 p.m., with bed time approaching and Lillian already looking glassy eyed, she had only consumed just over 415 mL for the day, and yet was batting the bottle away as I offered it to her.  I literally felt sick to my stomach.  I couldn’t enjoy my time with her.  I finally got a bottle into her and got her up to 660 mL before she fell asleep for the night, but we can’t always count on Lillian to wake up in the night when she hasn’t gotten enough to eat during the day (we’re probably the only parents of a 6 month old who don’t want our child to sleep through the night!).  Luckily she did wake last night, twice.  But with me having to wake up separately to pump, and both Dave and I getting up at 5:30 a.m. to make it out the door for work, pushing day feedings to overnight doesn’t exactly make our lives easier.  Hopefully, the drop in Lillian’s eating is just temporary transition pains, and we’ll all adjust and get it up again.

Week 5–eating like a big girl

Dave and I got the advice several months ago from Lillian’s local feeding therapist, and then reiterated by her Austrian coaches, to have her at the table with us while we eat.  While Dave was more willing to embrace this advice, I groaned inwardly (and felt guilty about it).  I already had to squeeze rushed, interrupted breakfasts, snacks, and lunches into the spare moments when our little miss princess didn’t need both my hands and my undivided attention.  When Lillian wasn’t gaining weight the way she should, her doctors looked to me–her milk maker–and asked if I was getting enough fat in my diet.  Already back to within a few pounds of my pre-pregnancy weight when my baby was just a few months old, I had to sheepishly admit that while caring for a special needs baby who couldn’t be put down and potentially couldn’t tolerate wheat, dairy, soy, or corn, it was hard to get enough of anything in my diet.  The only meal I could be assured of getting, let alone actually enjoying, was dinner–because we ate it after our baby was safely tucked in bed for the night, even if that meant eating at 8:00 p.m.

The first attempts at eating dinner with Lillian, back in her tube feeding days, were pretty horrific.  She would grab at the food on our plates for about five minutes and then the discomfort from her tube feeds, coupled with end-of-the-day fatigue, would kick in–fussing, crying, and vomiting would ensue.  Let’s just say we never once made it through a meal with Lillian.  We usually got a few bites into our meal and then had to leaving it sitting while we got Lillian fed and into bed.  Not exactly pleasant.

But Lillian reached a milestone this week.  Our kitchen/dining space is too tight for a traditional high chair (unless we want a smaller dining room table), so we have a feeding chair that clamps onto our dining room table and required that Lillian be able to sit on her own to use it.  This week, our big girl started using her big girl chair sitting at the table with us for meals.  She loves it!  And it’s a much more pleasant experience for Dave and I as well.  Lillian sits between us and has already perfected a system where she reaches for Dave when she wants sips of milk from her bottle, and reaches for me when she wants bites of puree from her spoon.  Then, after a while she gets bored with that and reaches for what’s on our plates.  I hand her anything I feel safe giving her (I’m just starting to read my copy of Baby-Led Weaning as recommended by Lillian’s local feeding therapist), and she plays with it for a while.  Dave and I can almost get through our whole meal before she starts to fuss.

When Lillian catches on to something, she really catches on.  She ate dinner with us last night in her chair for the first time, and then tonight we just could not get her to eat.  I tried feeding her on her play mat while she was playing, in her feeding chair (aka swing)while holding a toy, in my lap while holding a toy.  Dave tried all the distraction games he has come up with.  We tried different locations throughout the house.  Finally, we decided to just eat our own dinner and try again later.  As I was putting dinner on our plates, Dave put Lillian in her “high” chair and offered her the bottle one last time.  Eureka!  She started drinking away.  As I started bringing food to the table, Lillian looked at me expectantly and started kicking her legs in anticipation.  She seemed to be asking–where’s my bib?  Where’s my spoon?  Where’s my puree?  By the end of our meal she’d finished her bottle and eaten many bites of puree.  Dave and I can’t get over how cute she looks, such a small little girl trying to act so very big.

Lillian’s weight gain is still going more slowly.  She’s still plateauing for several days before making a gain.  Or she’ll make a big gain but then lose it again with one or two low volume days following a big volume day.  Tomorrow at her sixth month check up, it will be interesting to see what her total weight gain has been since her last doctor’s visit a few days after her last tube feed.  I’m sure the big picture over the last four weeks still looks positive, with the really big gains she had the first two weeks evening out the slow gains she’s had over the last two weeks.  But that won’t tell us if she’s going to be gaining enough moving forward.  I guess only time will tell.

 

Week 4–a plateau

Last week was the fourth week of Lilly’s wean, and we hit a plateau.  Over the last eight days, Lillian gained only a total of 60 grams.  Perhaps expecting gains of 30 grams a day to continue until she’s “caught up” was too much to hope for.  I asked our Austrian experts about it, and they encouraged Dave and I to keep the situation in perspective.  During the three and a half weeks since her last tube feed, Lillian has gained 350 grams and grown 1.5 centimeters in length.  Those are excellent stats for any baby Lillian’s age, and pretty darn remarkable for one eating entirely by mouth for the first time in her life.  During these plateau days, Lillian is taking in an average of a little over 700 mL of milk plus probably 5-25 grams of baby food per day.  According to her Austrian doctor, that is enough for her to grow on (and more than twice what she needs to stay hydrated).

But the amount of milk she’s averaging now is also about 100-200 mL less than she was taking in per day when she was growing more rapidly.  Today is her six month birthday, and quite frankly, according to how she expresses it to me, she is too busy to eat!  She has stuff to look at, new sounds to make, body movements to discover, objects to grab, and toys to play with.  We do best now feeding her on her play mat, while she’s holding a toy, or while we’re out in public with plenty of new things for her to watch.  During bottle feeds, we need to allow for breaks for her to play or look around.  She may or may not come back to eating.  Often we have to wait until she’s so tired she’ll take the bottle in her crib while drifting off, in which case she may drift off before she’s consumed as much as we would like.  She has also decided she’s ready to go back to sleeping through the night (as she did during her tube feeding days).  As wonderful as it is to see her so happy and loving life so much, it’s also frustrating and worrisome to see her pushing the bottle away as she’s smacking her lips or sucking her hand in hunger.

The Austrian experts advocate for Lillian’s right to self-regulate her food intake.  That seems like a sane approach.  Not letting Lillian regulate is what felt so cruel about tube feeding.  Clearly, forcing food on her at a time and volume of her doctors’ choosing made Lillian miserable and unhealthy.  I know when I was pregnant, my body told me when I needed to eat, and it grew a nearly perfect baby even though I didn’t follow the weight gain pattern prescribed in those weekly “your pregnancy this week” emails.  (Although the week to week gains didn’t correlate, I did incidentally gain exactly the recommended 35 pounds by term, using an eat-when-hungry approach).

But in the United States, the doctors all seem to be of the same school of thought–babies must stay on an exact growth curve, growing at the same rate as all other babies, or drastic measures must be taken.  Culturally, we believe in dream feeds and chunky baby thighs.  And we believe in it to the extreme–at one point Lillian’s gastroenterologist brought up CPS as a last resort if he can’t work with his patients to get their kids’ weight gain on track.  We were bringing her in to her pediatrician for weight checks sometimes multiple times a week, trying to buy time with enough weight gain to “prove” we didn’t have to give her supplemental formula that wreaked havoc on her digestion.  It often didn’t feel like we (Lillian’s parents, and certainly not Lillian herself) had a choice in the matter when it came to Lillian’s food intake, which is why we went along with the tube feeding protocols for as long as we did.  So I’m worried about Lillian’s six month appointment next week, and what pressure might be put upon us if she’s not on the same growth curve she was on last month.  Hopefully her doctor will be pleased with how well she’s otherwise doing, understand the circumstances, and cut us some slack.  Lillian is skinny (no chunky baby thighs here), but she’s alert, energetic, healthy (no longer vomiting, and only one cold and no fevers in 6 months), and meeting her milestones within the range “normal.”  But after what we’ve been through with medical professionals in the Seattle area, I can’t help but feel a sense of dread.  I just hope Dave and I can protect Lillian from the pressure and let her continue being the happy, self-regulating baby she’s become.

Days 23-27–Thirteen pounds and rolling

On September 2nd, Lillian surpassed the 13 pound mark.  While she’s still a lightweight for an almost six month old, her weight gain continues to amaze and impress us.  Dave calculated it out (we’re a couple of math nerds–sorry Lillian!) and figured she’s averaged just over a ounce of weight gain per day over the last two weeks.  That’s double the typical weight gain of a baby her age, which is great to see because she’s got a lot of catching up to do!

In the weeks after we took Lillian home from the hospital with her g-tube, she started to look scary skinny.  She was throwing up a lot.  Her gastroenterologist wanted us to start supplementing the breast milk she was getting through her tube with powered formula to increase the calories per ounce.  We tried it, and she broke out in hives.  We tried another type of formula, and  while the hives didn’t return, she started crying through feeds–crying even at the sight of her feeding pump.  During that time she stopped taking the bottle entirely.  After several terrible weeks, we declared that experiment over and went back to straight breast milk.  Her comfort level and oral interest at feeding therapy improved, but then her doctors weren’t happy with her weight gain again and were always asking us to force volumes on Lillian that were more than she could handle through her tube.  The vomiting and oral interest decreased again.  Her GI doc argued, perhaps rightly at the time, that adequate nutrition and weight gain had to trump feeding progress, and that we had to keep Lillian’s calories up even if it meant she threw up more.  He said that falling behind on weight gain could be linked to developmental delays.

But the irony was, Lillian fell behind developmentally because we were tube feeding her so much.  First, not sucking or taking food orally was a significant developmental delay in itself.  Learning to eat is one of first and most important milestones a baby makes.  Not having those critical survival skills can lead to significant trouble with eating down the road.  They’re also important for helping a baby gain the mouth strength and dexterity necessary for talking.  Also, because Lillian spent so much time upright and could rarely be on her back or stomach without refluxing, she experienced delays in all her large motor skill milestones.

Now that Lillian is eating orally, she’s catching up on more than just weight.  She’s catching up on developmental milestones as well.  Obviously, her eating skills are catching up to where they should be for her age.  She babbling more and making more varieties of sounds as well.  And she’s also able to spend more time on her back and tummy.  That has led to improvement in her large motor skill development.  This past week, she finally started rolling from back to stomach (she started rolling from stomach to back at four months).  Hopefully these are signs of more big things to come for our little one!

 

Days 20, 21, 22–going back to work

Earlier this week it became official that I’m going back to work on September 19, just a few days after Lillian’s sixth month birthday. It’s bittersweet of course. On the one hand, it’s wonderful that Lillian is  doing well enough that I can return to work, and we can get back to life as planned. On the other hand, it’s a little cruel for me that after months of worry and watching my baby struggle, just as Lillian is finally healthy and able to experience fun, new adventures, I have to leave her and let other caregivers enjoy the good times ahead with her.

A couple months ago, the thought of leaving Lillian with other caregivers was a motivating factor that led to me finding the Austrian experts at No Tube. In preparation for going back to work, I started  trying to leave Lillian for short stretched of time with her grandparents, who will be watching her when I go back to work. It was complicated trying to train them to use the feeding pump equipment while at the same time keeping Lillian as comfortable and content as possible. There had to be all these rules–keep one hand on her connection with the feeding pump at all times so it didn’t pop open and release all her stomach contents (it did many times anyway), keep her upright at all times and don’t let her stomach get compressed, hold her just the way she likes to be held (which required herculean stamina), sing her favorite song, try to give her the pacifier  but do it just right or it gagged her, and on and on.  We couldn’t let her cry because if she cried she would almost inevitably throw up, and if she threw up she wouldn’t gain weight. For a while I could usually get her through feeds by following all the rules, but it was hard for others, at times even Dave. When it got to the point that even I couldn’t get her through without crying, vomiting, or both, something had to give. I stopped even trying to leave her and also stopped sleeping. I started looking for resources for how to make tube feeding better for her, but as I read No Tube’s website and blogs of parents who has successfully weaned their children, I started to dream and I also started to wake up. Tube feeding wasn’t working for us. All the rules in the universe about how to  manage Lillian perfectly during a feed wasn’t going to keep her from vomiting. It was just going to make us all go crazy and feel like failures.

Taking care of Lillian is so much easier now. With the bottle, there really isn’t much to worry about. Lillian can get herself into whatever position she likes. Often that involves hanging her head backwards over my arm and dangling partly upside down while she drinks. It looks weird, but hey it works for her (I think it’s because she likes to see out but the bottle blocks her view–better upside down then obstructed by a bottle I guess). After she drinks her milk, there’s no long waiting period  for all the things she can’t do. I mean if you play airplane with her immediately after  she gulps down four ounces, you might be a little sorry, but nothing like before. So leaving her is no longer hard for the old reasons. But I’m finding it’s still hard for the regular reasons it’s hard for a parent to leave a baby. For one reason, Lillian is starting to experience separation anxiety, especially around going down for naps after I’ve been away from her. For another, she obviously doesn’t get the same consistency of care when others are watching her. And both those concerns make it hard for some of the old reasons as well. We still need Lillian to gain weight.  Her weight still lags her height and average for her age by a lot, and it will take months of steady weight gain to overcome that. We also have it hanging over our heads that her GI doctor will only remove her tube after three months of “excellent” weight gain.

So today when I left Lillian for two hours to get my hair cut, I felt good about leaving her because I wasn’t worried about tubes popping open or her vomiting up her feed and crying inconsolably. I finally felt like I could relax a little.   And she did well while I was gone, except that she only drank 60 mL over a span of time she would have ordinarily taken two to three times that for me. When I tried to put her down for an overdue nap she cried and held her arms out for me and wouldn’t stop until I got her up and held her.  Being overtired also makes Lillian refuse  her bottle.  By the end of the night, even though I got her to take two more four ounce bottles, she was still several hundred  millilitres short of where she normally is by bedtime. Tonight when we weighed her, there was no gain. Outcomes like this are inevitable when a baby’s routine is thrown off, and under normal circumstances, no big deal. Hopefully she just bounces back with a bigger appetite tomorrow. But of course I worry about what the upheaval of my going back to work will mean for Lillian, both for her long term weight gain and her sense of well-being. Leaving her is possible now, but that doesn’t mean it will be easy.

 

Days 18 and 19–making up for lost time

Today Lillian gained 56 grams in one day!  That’s equivalent to two ounces!  I hardly recognize her. For the first time in her life, she has a round belly and fleshy arms and legs.

When Lillian was two and three months old, ages when babies typically average weight gain of an ounce a day, we were lucky if Lillian gained even half an ounce a day.  More often she averaged a third of an ounce a day.  One week, at four months old, she gained only 1.2 ounces over seven days.  That was all when she was being fed with the g-tube, the whole purpose of which was to make sure she got adequate nutrition.  So two ounces in one day is amazing.  Granted she’s still making up for lost time.  During her wean, she lost four ounces and took sixteen days to return to the weight she was at the start of the wean.  But considering concern about weight loss is one of the biggest cons of a rapid wean approach, Lillian’s rapid weight gain now is reinforcement of the value of this approach.  If this trend of weight gain continues, or even a fraction of this weight gain rate, the temporary weight loss will be more than worth it in order to reverse the poor weight gain Lillian experienced with tube feeding.

What’s so interesting about Lillian’s weight gain is that, with the exception of one day so far, she’s consuming significantly less daily volume than when she was being tube fed.  That seems to suggest how much better food is digested and absorbed when it’s eaten orally on demand rather than force fed straight into the stomach.  I asked Lillian’s medical professionals multiple times if the fact her food was bypassing her mouth contributed to how much she was throwing up.  Each one of them denied that it played a major factor.  Clearly, in Lillian’s case it was the contributing factor.