Days 16 and 17–a whole new world

Today completes Lillian’s first week without any tube feeds.  She passed her pre-wean weight yesterday and has been averaging over 20 grams of weight gain per day this week.  It’s too soon to tell if this rate of weight gain will keep up, but it’s a great start!  Lillian’s back to a weight percentile between 5-10% which is where she’s hovered most of the time she’s had her g-tube (dropping below the 5th percentile a couple of times).  Dave and I are hoping she can steadily gain enough weight over the next few months to jump up in the growth curve to where we think she’s more naturally supposed to be–probably around the 50th percentile, which is where she is for height.

The best part is that as Lillian’s been gaining weight over this past week, she also seems to be genuinely enjoying every moment of it.  That’s unlike before where in order to get Lillian to gain weight she had to suffer through discomfort and long hours hooked to the feeding pump.  But eating is pleasurable for her.  She loves drinking her bottles, and she gets so excited when she seems me getting out her spoon and baby food that she gets impatient with me as I button her bib on and can’t wait to grab the spoon and start chowing down.  There’s no worry about getting her to eat enough, no stress about how we’re going to stuff enough ounces in her.  In fact, one day this week she drank 950 mL in a 24 hour period–more than we were ever able to feed her through her tube and without any vomiting or crying!

After watching her suffer for so long, Dave and I are so thrilled to see her so happy.  The world is opening up to her in ways that were not possible before.  Over the past two days, she’s gone out to lunch twice, gone on a real hike, and gone to a block party.  At restaurants and the party, she loved checking out the crowds and eating her purees while her lunch mates ate their big person food.  On the hike, she loved looking at the scenery and watching people and dogs pass.  Dave and I once took Lillian on “hike” during the feeding tube days–here’s how it went:  We drove to a park 10 minutes from our house, walked on trail for about 10 minutes, then had to get back in the car to make it home for the next feed.  Dave and I were never envisioned being stay-home-all-the-time parents.  We wanted to show Lillian the world, and now we finally can.  She’s loving it!

Days 14 and 15–eating like a 5 mon. old

Ever since Lilly started eating, eating and sleeping has been pretty much all she does.  At first because the advice was to offer her a chance to eat every time she showed hunger cues, which, because she wasn’t eating and was getting less through her tube, was all the time.  And then because once she started eating, it was all she wanted to do!  And she was slow at it.  Each day, the amount she’s been eating has been picking up.  Until yesterday.  Yesterday she started acting like the five month old she is.  She didn’t want to drink her bottle because she wanted to squirm and look around, or play with her toys, or grab at objects on the coffee table, or drink out of my water bottle instead, or eat off Dave and my plates instead (which we couldn’t let her do because our food required teeth and she doesn’t have any).  And she didn’t want to sleep either, so she was cranky and hyper, which also didn’t help the eating situation.  So by the end of the day, her intake volume was behind the day before, and her weight was actually down a little over 20 grams.  I wondered if I should be concerned that her interest in eating might be waning, but I decided to keep things in perspective.  Her volumes and weight are bound to have down days just like she has days where she sleeps better than others.  And really we were only talking about a minor decline, not a complete halt or anything of the kind.

And sure enough, today she ate her biggest volume yet and had her biggest weight gain–over 50 grams!  That brings her within 10 grams of her weight at the start of her wean.  The key seems to be making sure she gets enough stimulation in between eating and sleeping.  She is a five month old after all!  She needs to play and explore.  She needs interesting things to look at and do while she’s drinking her bottles.

Dave and I asked her local feeding therapist how long it would take Lillian to “catch up” to have eating skills that match her age, and she expected it would only take a couple of weeks.  Sure enough, Lillian already seems to be improving.  When she first started drinking the bottle, a lot dribbled out of her mouth as she sucked, even with a preemie nipple.  Now she’s using a size 1 nipple (0-3 month) and dribbling very little.  At first, it would take her an hour to finish a 2 ounce bottle.  Now she can finish a 4 ounce in 45 minutes if she really puts her mind to it.  And this is a little one whose belly couldn’t handle even a 3 ounce feed over 45 minutes through her tube.

As I watch Lillian eat, it makes sense now why the tube feeds didn’t work for her.  With her bottle, she drinks for a while, then pushes it away to take a little break.  She drinks 60 mLs or so, then takes a pause, then comes back and finishes to rest of the bottle.  An hour later she might want another bottle.  The tube didn’t allow for any of those kinds of eating patterns–at least not easily.  Also, while she’s drinking her bottle, she likes to fling her body around, throw her head back, squirm this way and that.  When she was getting her tube feeds we were always trying to keep her as still and upright as possible to keep her stomach from refluxing the feed back up and keep the feeding pump tube from popping loose and spilling both milk and her stomach contents all over the place (which it did many times).  She also continues to eat around 200 mL less in a twenty-four hour period than she received through her tube.  Yet she’s gaining weight on these volumes (although we need more time to be sure that will continue).

One question in our minds as we started the wean was whether Lillian even really has reflux or if everything we were seeing was all the symptoms of tube feeding and being overfed.  That question seems to have been answered over the last couple days–she does still have some reflux.  But oh my gosh is it different than what we were seeing up until we started the wean!  The reflux we see now is normal baby stuff like spitting up a teaspoon or so when she gets to the end of a meal or has a big burp or gets played with too roughly with a full belly or lays flat on her back for a long time after a big meal.  I use the term spit up because it’s appropriate for what happens.  While her doctors used the term “spit up” for the huge volumes of vomiting she was having while she was tube feeding, I stopped calling it that because vomiting up most of your stomach contents is not spitting up.  It’s vomiting!  Lillian spits up maybe twice a day now.  She used to vomit five or more times a day on tube feeding.  Other than that, the only other reflux symptom we continue to see is some silent reflux (you can hear stomach contents going up and down her esophagus but not coming up) when she has been crying really hard.  That seems painful for her, but it doesn’t happen often.  But even these symptoms should dissipate as she gets better at eating (swallowing less air, stopping when she’s full) and gets a little older (stronger stomach sphincter and more time upright).

Day 13–graduation day

Lillian and I have been going to weekly feeding therapy sessions at Children’s Therapy of Woodinville ever since she got home from the hospital.  Her two feeding therapists there have been excellent resources and support systems for me and are great with Lillian.  They helped me take her from a baby who couldn’t stand anything in her mouth to a baby who puts her hands, my hands, and toys in her mouth, and most importantly, was willing to accept and swallow drops of milk.  But given conditions that were not within their control, that’s all the progress we could make while Lillian was full, uncomfortable, and refluxing from her tube feeds.

Today Lillian, Dave, and I were excited to show Lillian’s therapist that Lillian had become a bottle drinker in the week since we last saw her.  Lillian was so eager to show off for Suzy that she drank an entire four ounce bottle in front of her (Lillian always likes putting on a show and does more for an audience than she does just for me, especially at feeding therapy).  Suzy was impressed and happy for us.  She answered our questions about bottle feeding, pumping, and weaning Lillian from her reflux wedge, and then promptly graduated us.  We had no reason to keep going now that Lillian is essentially developmentally normal.

Lillian and I spent the rest of the day going out to lunch and shopping with grandma and then taking a nice evening walk with Dave when he got home from work.  My curious little baby was so content to take it all in and experience new sights, sounds, and smells.  These are the simple pleasures I’ve been dreaming of sharing with Lillian that were nearly impossible before because of the tube.

I try not to dwell on what could have and should have been if Lillian had been weaned from her feeding tube at three weeks old when she was medically ready to eat on her own.  But of course I have a strong opinion about it now that I have the perspective of seeing what’s possible.  I believe that Lillian, and probably many other babies like her, could have been spared months and what probably would have been years of living unhappily with a feeding tube if she had been appropriately weaned in the hospital.  All that was needed was the experience and willingness of her neonatologists to safely reduce her tube feedings so that she could learn to eat while experienceing hunger.  Newborn babies typically lose ten percent of their birth weight as their mother’s milk comes in and they learn to eat.  Lillian was on IV and then tube nutrition from day one, so she never lost weight.  Then even when her lungs had healed and she was ready to learn to eat, her doctors ordered that she keep receiving enough food each day to gain weight.  Whatever she didn’t take by mouth every three hours, she got by tube.  Some babies may be hungry enough under those circumstances to eat by mouth anyway.  Lillian was not.  She was so full it was coming back up, which made her miserable.  Who would want to eat under those circumstances?  She needed the opportunity to discover her own hunger satiation cycle, and she needed to be allowed, like most newborns, to lose a little weight as she learned.  Lillian’s doctors and respiratory therapists knew how to appropriately wean her from respiratory support as her lungs healed and wean her from a morphine dependency once she no longer needed it.  Why don’t American neonatologists know how to wean babies off feeding tubes?  There is a better way out there, and it shouldn’t have taken five months and Dave and I paying out of pocket (we both have excellent employer provided health insurance) to experts halfway around the world to find it.

With that said, I thank God we did find it and celebrate every moment ahead of us with our tube free baby.  Today Lillian gained another 33 grams.  We’re on our way.

Day 12–happy baby

Yesterday Lillian’s weaning coaches recommended no tube feeds if she drank at least 300 mL of milk.  The day prior she drank about 360 mL.  Well, her grand total yesterday was a whopping 720 mL of milk!  Double what she drank the day prior!  And she’s on pace to do the same today.  We were rewarded with rebound weight gain of 32 grams in one day (10-15 grams per day is good for a baby her age).  How does 720 mL compare with what she used to get by tube before the wean?  It’s about 200 mL less.  But, unlike before the wean, she’s not throwing any of it up.  And what’s really interesting is she drank that during the day, between 5 a.m. and 10 p.m., whereas before we had to feed her about half of her volume overnight in a continuous slow drip because she couldn’t handle more than about 500 mL during the day.

We were curious to see how Lillian would do with no overnight feeding for the first time in her life.  Dave and I planned ahead how we would divide and conquer if Lillian woke up crying to be fed overnight.  Dave was going to do those feeds since I wake up in the middle of the night to pump–this is similar to our previous division of labor with me making Lillian’s milk and Dave loading in her feeding pump every four hours.  He was so excited about feeding Lillian that he actually hoped she’d wake up in the middle of the night–it was really sweet.  She sleeps in our room, so she basically woke up when we went to bed, when my alarm went off for my middle of the night pump, and at 5:00 a.m.–these are the times she was most likely to wake before except that she’s a lighter sleeper now that her belly isn’t continuously full of milk.  Not bad!

Lillian had a routine doctor’s appointment today and her doctor was excited to see a bottle in Lillian’s diaper bag.  But she was absolutely floored when I told her Lillian was already off tube feeds.  She couldn’t believe Lillian was weaned just 12 days after we told her we were starting.  She was so happy for us!  I also called Lillian’s gastroentologist’s office to find out the protocol for removing her tube.  I would have loved to see the look on his face when his nurse told him my question.  We were just in his office a couple weeks ago, and Lillian was wailing inconsolably as we fed her using her portable pump.  He didn’t think Lillian could make any progress eating until her feeds got more comfortable for her, hence his prediction she’d have the tube until at least her second birthday.  Instead, we were told if we can go three months without using her tube and she had good weight gain during that time, the tube could come out.

The most exciting news is that Lillian seems to feel great–she is happy and playful and energetic and felt so good today that she didn’t want to miss a moment by napping.  I remember crying in Dave’s arms a few months ago lamenting about how miserable our baby was.  He didn’t know what I was talking about because she seemed so happy to him.  But her schedule at the time meant he saw her during playtime and I saw her during feeding time–and that explained the entire difference in our perspectives.  Now she gets to be a happy baby all the time.  What more could a mother ask for?!

Day 12–no tube!

Lillian drank so much milk yesterday that when I filed my daily report to our net coaches last night, they revised our plan for today.  They were so proud and impressed with Lillian’s progress, that they recommended as long as her digestion returned to normal (check) and she drank at least 300 mL of milk by 8:00 p.m. (she exceeded that yesterday), she didn’t need any tube feeds today.  Lillian met both criteria by noon today, so she’s tube free!

She’s been a little milk drinking machine.  Pretty much every moment she’s awake, she wants to drink her milk.  She stops to be burped and to sleep, but otherwise she’s all about the milk!  I’ve dreamed of the day I could hold her in my arms and look into her eyes as I fed her a bottle, just like I did with my nieces when they were babies.  Up until today, we’ve been feeding Lillian in a reclining chair to give her the proper alignment for eating and to enable her to easily see our faces.  But today I couldn’t resist holding her in my lap to give her the bottle.  She’s a squirmy little thing, interested in everything going on around her, and always kicking her legs, reaching her arms, turning her head, and arching her back to look different directions, so it wasn’t exactly as peaceful as I envisioned, but it was an amazing feeling nonetheless.

Dave and I packed her in the Ergo, walked to a nearby lunch spot, and I fed her the bottle in my lap while we waited for and then ate our lunches.  She slept in the Ergo during the walk home.  Again, we marveled at the world that has opened up for all of us by not be tied to the tube all day.  In our living room, we’ve had a white board with Lillian’s tube feeding schedule, my pumping schedule, and reminders of all the steps and calculations involved in feeding her by pump.  For four months, since Lillian’s been home from the hospital, that white board has dictated our daily schedule.  Leaving the house or having people over was a complicated math equation of how to shift things around to put together a couple hours disconnected from the pumps.  During our walk, Dave and I joked about burning that white board!

So far Lillian has lost four ounces of weight during her wean, so once she successfully transitions off the tube, hopefully the next step will be helping her increase her oral intake to the point where she starts gaining weight again.  Only then will we really know the wean was a success, but it’s sure feeling successful so far!

Day 11–almost portable

One thing I used to say about Lillian is, she’s not portable.  We had to feed her by pump every three hours, those feeds took an average of 40 minutes, and, until recently, she couldn’t go in the car for at least an hour after that without throwing up.  So that left a window of an hour and twenty minutes to leave the house and get back again.  Factor in travel time and my pump schedule, and, well, just forget about it.  We have a portable feeding pump for her, but given how miserable she was during feeds, feeding her in public was pretty unworkable.

Just before we started looking into this weaning program for her, we tried taking Lillian on a day trip to the family lake house, which is about a 90 minute drive away.  The logistics of timing the drive there and back around her tube feeds was challenging, and hitting traffic meant we were an hour late feeding her.  Packing had to include all her feeding pump equipment (pump, bag and pole, syringes, milk) and her reflux wedge.  She was fussy on the way there because we were late feeding her, and then fussy as we approached home because it was her bedtime and she was exhausted but we had to keep her awake to feed her again.

We took Lillian to the lake house again today and marveled at the difference.  She’s still getting a few partial tube feeds a day, so we still had to pack the pump equipment, but we had flexibility around when we could leave and come back.  I fed her a bottle in the car, which she happily consumed and then she slept.  On the way back, she took a bottle before we left and then slept the whole way home.  It’s so much easier for her to fall asleep now that she’s eating and sleeping on her own schedule rather than one that revolves around the feeding pump schedule.  Having food for her was as simple as packing a bottle and a jar or two of baby food.  So liberating!  And when we don’t have to worry about the pump and reflux wedge, we’ll really be home free.

It’s too soon to say for sure, but the reflux wedge seems to be a unnecessary these days.  Lillian doesn’t throw up anymore.  It’s so amazing I have to say it again.  Lillian doesn’t throw up anymore.  Today Dave and I watched in awe as, on two different occasions, Lillian comfortably and happily sucked down 90-95 mL of milk (about 3 oz.) from her bottle while having an additional 40-50 mL pumped into her stomach via the tube.  Before she couldn’t tolerate a 90 mL tube feed without crying and vomiting.  Then we would have had to hold her upright or put her on her reflux wedge for at least an hour afterwards to try, sometimes unsuccessfully, to avoid further vomiting.  If she needed a diaper change, it would have to wait.  If she needed a change of clothes, I’ve become a adept at dressing and undressing her while upright in my arms.  But today she was taking in around 140 mL total and not showing any hint of discomfort.  Immediately after both feeds, I was able to lay her down flat to change her diaper with no problem.  We couldn’t believe it and are so excited about all this opens up for Lillian and our family.

Today Lillian became a bottle girl for sure.  She started first thing in the morning (pretty huge for our not-a-morning girl who has until now never taken food orally before until after her first nap) by finishing a whole two ounce bottle.  Then she continued to finish several four ounce bottles throughout the day.  And she stopped needing to be talked into bottles through use of the pacifier.  At one point she saw me getting the bottle ready and reached her arms for it and whined until I gave it to her.  At several points I took it out of her mouth because she coughed or to check how much was left and she reached for it to go back in.  Earlier in the wean I worried when the coaches encouraged me to give Lillian purees even though she was refusing the bottle.  They promised tasting purees was an easier way for Lillian to become accustomed taking food orally, but I worried she would like solids so much she wouldn’t take a bottle.  And while she still really likes eating solids (and would eat off Dave and my plates if we let her), she now likes the bottle even more, switching to a milk to solid ratio that’s more typical of a baby her age.  That’s a relief to me knowing she’ll get all her nutritional needs met, and to her digestive system which was becoming a bit backed up from her love of sweet potatoes and boycott of the bottle.

Day 10–empty bottle

At 9:30 a.m. on August 19, 2016, when she was five months old, Lillian finished her first bottle.  It was a 2 ounce bottle with a preemie nipple, but still!  She drank it partly with the pacifier in her mouth, but at times, she allowed me to take the paci away and drank the bottle directly.  Baby steps.

Dave had taken the day off work and got to be home to witness it with me.  Lillian’s perceptive eyes roved from his face to mine and back as we cheered her on.  She seemed to be looking at us like, I don’t know what you’re so excited about, but I like it!

The bottle drinking didn’t end there.  By midday, she’d taken it several more times and drank as much as she did all day yesterday.  She still needed her pacifier to take the bottle, but it got to be as simple as starting her out with two sucks on the pacifier and then subbing in the bottle.  It’s so cute how that makes all the difference to her, because every time I offered the bottle directly, it was a no go.  Even as she was drinking the bottle, she liked the pacifier to be within sight.  Sometimes she wanted to hold it and tap it against the bottle.  Sometimes she wanted to take a break from the bottle and take a few sucks from the pacifier before going back.  Several times throughout the day she tried to refuse the bottle and only suck her pacifier, but I remained steadfast.  The Austria coaches had warned that Lilly could suck her hunger away on her pacifier if I let her have it too much.  So no paci for Lilly accept to go to sleep or while drinking her bottle.  If she refused the bottle, we took the  pacifier away too.  Eventually, my strong willed daughter got the message and yielded.  In the evening she finished another whole bottle.  Pretty soon, we’ll need to get out our four ouncers!

The amazing thing about watching her drink the bottle is how natural it was for her.  Her mouth and tongue wrapped around the nipple just like a baby who has been drinking milk since birth!  She paced herself well, took little breaks, kicked her legs, grabbed at stuff with her hands, looked around the room, and seemed totally relaxed and at ease.  Is this the same baby who would not suck at all just a few weeks ago?  The same baby who has had her suck analyzed by feeding specialists and had it called disorganized and weak, who health practitioners warned us might never drink from a bottle?  Dave and I are amazed at how she is able to tap into an instinct that has been dormant so long and was never properly nurtured at the appropriate stage of development.  It takes courage and grit to acquire a skill outside the window when it comes most naturally.  We couldn’t be more proud.

 

Day 9–Dr. Brown’s it is

I woke up this morning determined that today was the day to get Lilly to start taking the bottle.  I’m learning that there’s a difference between being determined and being forceful as a mother.  I can’t force that bottle in her mouth (believe me, in moments of desperation I’ve tried it) or it will only backfire, but I can be determined to work with my daughter to take the next step forward.  I’m a pretty determined person when I want to be, and so is Lillian, so if we combine forces, we can accomplish this.  It’s determination, both mine and that which Lillian inherited from me, that saved her life and got her where she is today.

Lillian is growing increasingly skilled and comfortable with swallowing milk while she sucks, but Dave and I dripping milk on her pacifier is a transition, not a way of life.  My back and neck, aching from leaning over Lillian dripping milk for 20-30 minutes at a time all day long, say it must be so.

The Gumdrop bottles arrived early in the afternoon and I talked them up to Lillian, telling her it was a bottle that would feel just like her pacifier.  She took the bottle from me with enthusiasm and began sucking from it right away.  But after two sucks, she turned away in disgust and looked for her pacifier instead.  I tried several more times, but each time, it was the same reaction.  I touched the two nipples, and while they were shaped exactly the same, the pacifier was soft and yielding while the bottle nipple was stiff.  Plus there’s the obvious difference that one squirts milk while the other doesn’t.  But then I tried her original Dr. Brown’s bottle–the one we’ve been using since she was in the hospital–and she started sucking it!  It was like, okay mom if you’re going to keep pushing these ridiculous milk squirting things on me, I’m sticking with the one I know.  A part of me was relieved she didn’t want that silly Gumdrop bottle.

She went on to drink an ounce of milk, sometimes directly from Dr. Brown’s, sometimes with both the paci and the bottle nipple in her mouth at the same time.  When she drank from the bottle, she wanted to hold her pacifier in her hand, or she wanted me to hold her pacifier close to her mouth while she sucked the bottle.  It was pretty cute to watch how she used her pacifier for security while she made the transition.

Later in the day, she wouldn’t replicate the experience.  She cried for the pacifier when I offered her the bottle and even protested when I squirted milk on it before giving in and letting Dave do it.  But transitions happen little by little, that’s why they’re transitions.  Tomorrow is another day, and I’m determined to help her keep trying.

Day 8–eating like a newborn

When I talked to one of the coaches in Austria via Skype for a consultation before we decided to move forward, she told me that Lillian would eat like a newborn at first.  That made sense.  Newborns are just learning to eat, so they’re slow and inefficient at it.  So they eat all day long (and night too).  That was our Lillian today.  She was a non-stop eating machine.  But, hey, we’ll take it!  She was practically eating all day long on the feeding pump too.

Today Lillian started eating in the morning with tastes of mango (her new food introduced yesterday).  Then throughout the day she also polished off half a jar of sweet potato puree (seems to be her favorite), more mango puree, a mashed up slice of avocado, and a few bites of pear puree.  She also let me and then Dave drip milk on her pacifier throughout each of her four bolus feeds and beyond.  It’s a tedious process that requires an awkward sitting position for Dave and I.  My back and neck are killing me, but I am so happy to see Lillian drinking her milk.  This is a baby who, a little over a week ago, sometimes wouldn’t swallow her own saliva she was so wary of letting anything go down her throat.  This is a baby who at times wouldn’t even suck her pacifier because it gagged her.  This was a baby who, just days ago, was hungry but had no idea what to do about it, who cried when I put her in the feeding chair.  If dripping milk on her pacifier is what it takes right now, I’ll keep dripping one painful little drop at a time.  I estimated that we got about 2.5-3 ounces in her total throughout the day using that method, and some of that ended up dribbling back out or dripping onto her shirt instead of her mouth.  Like a newborn indeed!  I’m trying to not think about how long it would take to get 24 ounces (the daily minimum the literature says a baby her age typically drinks) into her.

But I am holding out hope this is just a transition.  I tried to sneak the bottle into her mouth directly several times, but each time she sucked a few sucks and then turned away searching for her pacifier.  That’s progress over the screaming she was doing last week when I tried to offer the bottle instead of her pacifier.  Plus, I have a secret weapon on the way.  After all the times lamenting that Lillian only wants to suck the pacifier and wishing there were a way to get milk to her through it, I did some research and discovered Gumdrop, the brand of pacifier the hospital got her addicted to, does actually make bottles with the same nipple shape as their pacifier.  Who knew?  They’re pretty obscure, probably terrible bottles, and have been discontinued by the manufacturer, but they do exist, and after paying three times the retail price to a third party seller through Amazon.com, they are going to be delivered to our doorstep tomorrow.  We’ll see what Lillian thinks.  Some way or another, with the voracious appetite she is developing, she’s eventually going to want to get her milk more efficiently.

Lillian may be like a newborn at eating, but she is also catching on incredibly fast.  Whereas yesterday eating required all her attention, today she was relaxed as she ate, looking around, playing with the straps on her chair, even dozing off while she sucked and drank milk.  She also tried out a new sippy cup–she understood how to use it right away and liked it!  She held the handles in her little hands, tipped the spout to her open mouth, and took several sips.  Throughout the day, I found she liked using the sippy cup to wash down some of the solids she was eating.  She did not, however, want to take large quantities of milk from it.  There’s a bottle girl somewhere inside this baby, I know it.

Day 7–not a morning girl

One piece of silver lining with tube feeding is that Lillian has slept through the night since she was about 3 weeks old, aside from when she wakes up vomiting.  (Now mind you–this does not mean that I ever get to sleep through the night.  I am a pumping mama and hasn’t gotten longer than a 4 hour stretch of sleep since my third trimester.  I average 2 2-3 hour stretches a night, and even less when I roomed with Lillian in the hospital for 2 weeks.  I’m perpetually tired.)  But as we have been reducing Lillian’s overnight feeds, she has become a less sound sleeper.  In fact, she’s been waking up crying, which she’s never done before.  And last night was the worst yet, with her waking up crying several times in the middle of the night until Dave finally got up with her at 5:30 a.m.  The problem is, although she’s waking up hungry, she won’t take any milk and food orally.  It’s such a helpless feeling watching her struggle and refuse any solution.

After her rough night, Lillian continued to have a rough morning.  She fussed, pushed away food, cried, and slept, fussed, pushed away food, cried, and slept.  I worried a little about regression after the great night of sweet potato eating she had previously, but I also kept in mind the feedback I got from Austria when I reported her regression taking the bottle–“children act flexible and so must parents.”  And as I’ve told Dave before, Lillian takes after her mama–she’s not a morning girl.

By midday, she finally accepted a few tastes of mango puree and tried drinking some water from a sippy cup with her local feeding therapist.  Good but not great.  Next she wanted to suck the pacifier, but in an amazing turn of events, she let me pull it out of her mouth every third suck and squirt several drops of milk on it.  Over and over throughout her whole bolus feed, which was about 20 minutes, she let me put milk on her pacifier.  She seemed to want me to put milk on her pacifier.  She watched me do it without any fussing.  Tears came to my eyes over the significance of her consent to having milk in her mouth while she sucked, something she has refused to do for months.  Even when she has taken a little bit of milk from the bottle recently, it’s with a cleft palette valve so that she can get milk by chomping rather than sucking.  But this afternoon, she looked into my eyes calmly and held my hand on her pacifier and seemed to be saying, “I’m giving you my trust now, mom.  You’ve stopped trying to force this on me when I didn’t want it, so now I’ll try it.  And you’re right, the milk is making me feel better.”

By evening she was ready to have another go at some sweet potato puree–eating about 2 tablespoons that she shoveled into her mouth herself with her spoon.  After that she had some avocado, and then she sucked her paci and let me put milk drops on it throughout the whole next bolus feed.  She even chomped on the bottle directly for a little bit.  By the end of it, she’d taken about 2/3rds of an ounce of milk.  Nothing to your typical five month old, but more than Lillian has taken since she was a month old.  I know we still have a long way to go, and it continues to be hard watching Lillian struggle with feelings of hunger she doesn’t fully know how to abate.  But when my daughter eats, even a little bit, I feel like a new person, like I might finally be able to put down the hundred pounds of weight pressing down on my shoulders for the last five months.