Now that we're nearing mid-December I thought I'd update our small following (hi mom!) on the progress Ms. Olive made in November. And by progress, I mean she ate one mini m&m and one mini marshmallow one time, but the girl is trying. She really is. She looks forward to meals and sits at the table attacking her plate with gusto each and every time.
If her enthusiasm and effort correlated with her consumption, she'd be eating those dang goldfish by now, but unfortunately we're still plugging away with the concept of chewing. Her new approach is to stuff way too much food in her mouth and then attempt to chew. An interesting approach that almost always leads to her choking and vomiting when she can't quite get all of the mushy mess out. This does not deter her though. She repeats this process daily and even tells herself that she's putting too much in her mouth. It is obviously a game to her so while it's incredibly frustrating for me, at least she is openly exploring food and attempting to chew. She just has to do it her way obviously. Even if it does mean her mother cleans vomit daily and does laundry nearly as often.
The end of November marked our first month at home from the feeding program. We went all in when we first got home, but five weeks later, we have definitely rethought our approach. We were pushing Olive to drink at least 20 ounces of milk daily with limited tube feedings. And it was a push. It was all day, every day of nearly forcing Olive to drink milk. In the car. At the table. Following her around while she plays coaxing three sips here and three sips there. It was high stress for everyone involved. And it was impossible to variate our schedule.
It was doable with just Olive and I at home during the day, but if you mix in any sort of outing or even a few errands it throws the schedule out of whack. This really hit home over Thanksgiving, where it was nearly impossible for us to follow the milk consumption regimen. Yet if we didn't, she wouldn't be getting enough calories. We literally couldn't drive thirty minutes and then take our time at the Christmas tree farm because we would be missing a milk session. Finally one day we sat down and asked ourselves why we were making her drink so much milk. Obviously it's great for her to be putting those calories in her body by herself, but apart from that, it dawned on me that we didn't really need her to drink that much milk.
Luckily Olive was up a pound at her weight check on November 25 with her pediatrician. We were all happy to see that as it's hard for this pipsqueak to beef up especially with her constant motion. We also mentioned to the doctor that Olive was having difficulty with constipation, and the doctor said yes of course because whole milk is really constipating. As are some of the other high calorie options we use frequently like bananas and carrots. This was all news to us. Another problem that didn't surface until we were at home fending for ourselves. She also pointed out that most girls potty train between two and two and a half years old. As in, hey guys you need to get going, which she said won't be possible with a constipated kiddo. It is always something I tell you.
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| Making cupcakes with her cousin Eleanor. |
I also did a little research (and by research I mean google) and learned that the recommended amount of milk for a kid Olive's age is more like 1-2 cups. She is easily getting this amount between what we put in her blends and what she will willingly drink orally on a daily basis. Dain and I both agreed that we just can't keep pushing the milk when what she needs is to learn to eat solid foods orally. At first, we felt like we were failing if we didn't make her drink a lot of milk every day, but we've adjusted our outlook and agree that this is going to happen for her, it's just a matter of time. Which is not to say it's easy, but it is certainly less stressful to not have to be charting every little milliliter of milk she drinks throughout the day.
The step back on the milk front obviously means that we have to tube more. We've gone back to tubing a full lunch but moved the timing around to make it more likely for her to want to eat orally. Our rough schedule is:
7:30: Tube 60 ml water
8:00-8:20: Tube 155 ml breakfast blend; Offer food orally
10:30: Offer Olive milk (3-4 ounces)
12:00: Tube 60 ml water
12:30: Tube 160 ml lunch while sitting at table working on oral eating too
2:30: Offer Olive bottle (2-4 ounces milk)
3:30: Tube 60 ml water as Olive naps
5:00: After nap offer milk or tube 60 ml snack (fruit or yogurt)
7:15: Sit down for dinner and offer food orally
8:30: Tube 120 ml dinner blend
11:00: Tube 60 ml dinner blend plus 45 ml water as Olive is sleeping
So this is still a lot of steps, and it may not be the best schedule for trying to stimulate hunger. Polly would probably say it is way too much tube feeding, but it's just a necessary evil at this point while Olive is improving her oral skills. And she has surprisingly been much more open to working on her oral eating with this plan. She has been doing a great job at lunch and dinner really trying to suck on food and chew it. Of course she still nearly always spits it out or pulls it out with her fingers, but her comfort level with things in her mouth is amazing compared to a few months ago. So we continue to creep along.
One new thing that we discovered is that Olive loves shaker cheese. She pours it onto her plate and then just absolutely laps it up with her fingers. It's not typically eaten by itself, but more power to her for finding something she likes and asks for and actually puts in her mouth. She has also been really into mini-m&ms and string cheese and my nemesis, the Pepperidge Farm goldfish. And of course goat cheese. She is biting her spoon and taking big bites of goat cheese for us at dinner, which is a skill Polly was trying to get her to model at feeding school. So overall she is really improving, albeit at a snail's pace to the average person thinking about "eating" in terms of actually consuming food and fueling your body that way.
I would be remiss in forgetting to mention that the real impetus for taking a step back on Olive's milk consumption is that she got sick after Thanksgiving, as tends to happen after family gatherings. It was honestly just your run of the mill cold and possible ear infection but for Olive this caused random coughing fits when she reclined that led to vomiting. As in, vomiting in her carseat and vomiting while leaning back on the couch and vomiting during her nap while sleeping. So that was not fun. Yet barring a runny nose, she was otherwise fine with no fever. We thought she had an ear infection when this went on for a few days as the only symptom she had the one time she's had a diagnosed ear infection is the vomiting while sleeping.
We made the (rookie) mistake of taking her to urgent care on last Monday night to have her ears looked at. It was a debacle of expensive proportions. The urgent care doctor didn't think she had an ear infection (after a nurse had to clean the wax out of one ear,) but she was very concerned with the coughing/vomiting symptom. When I asked if it could just be a cold, she was very non-committal and started talking about a possible obstruction and maybe a g-tube complication. We had no idea what she was suggesting and she couldn't really elaborate, but after a long wait while she spoke to the pediatrician on call (not Olive's regular doctor) she informed us that we needed to go to the Children's emergency room immediately. We were shocked by that directive. It really escalated quickly from just wanting to see if our child had an ear infection to everybody panicking. And I get it. The girl has an extensive medical history for a (nearly) three-year old, and nobody wants to be the one who missed something. But on another level I know her better than anyone else, and I didn't think there was anything more serious than a cold and/or ear infection going on. Vomiting is just kind of her modus operandi.
In all honesty, neither of us thought there was anything wrong with Olive that warranted that trip, but we were backed into a corner. She'd already called them to say we were coming. She told us her and the pediatrician on call both thought it was necessary as well as the doctor she spoke to at Children's. We discussed just not going, but then I started to think that if something was really wrong with her, we'd be in trouble for not following the medical advice or that maybe we really were missing something. So we begrudgingly headed over to Children's. I think I laughed when the urgent care doctor asked if we needed directions. Totally inappropriate, but I was exhausted and liken that question to asking if I need directions to Target.
We arrived at Children's around 9 p.m., and it was standing room only folks. And let me be straight up with the fact that an emergency room in the middle of cold and flu and rsv season is one of my worst nightmares. There were sick kids everywhere, and all I could focus on was the cacophony of sneezes and coughs, the piercing wails and my urge to put on a mask and douse myself, Dain and Olive in bleach. If we weren't sick when we walked in, we sure as shit were going to be when we walked out. I actually totally function as a normal person, but these are the thoughts that raced through my head as I was sanitizing my hands just walking in the door and clutching Olive a little closer. Thankfully we were triaged quickly, but our hearts sank when we heard that there was a 2-3 hour wait.
We trudged to the very end of a long hallway far past the people sitting in extra chairs that were being brought in to hold the hordes of people. We stood there for a moment, and Dain asked me if we were literally going to stand there for a few hours holding our bags and Olive. He didn't appreciate my answer. As luck would have it, a few chairs opened up and I made Dain grab them, walk them down the hallway, and Clorox wipe the heck out of them before we settled in for the next few hours. Olive was amazingly entertained walking up and down the halls, each of us taking turns with her. She marveled at the vending machines and the art on the walls and on the floor. She charmed the security guard at the front desk who gave her a sticker and a nurse who brought her out a tiara, a wand, and a bracelet.
It was incredibly surreal to be walking those deserted halls next to Olive. The same halls that I walked every day and night while she was hospitalized. Back then I couldn't even look to the next day let alone imagine a day where I'd be literally chasing after her. This was all lost on Olive of course. She was having a time of it. But the moment wasn't lost on me. And in many ways looking to the past is what grounds us. Knowing that we have come so far makes it ok that we have a little farther to go with this whole eating business. Because Olive is truly kicking ass and taking names in the grand scheme of her life. She's happy. She's healthy. She's developmentally normal. All of her major medical issues resolved. She just doesn't eat.
We eventually saw the doctor around eleven. She said Olive most likely had a viral infection like a cold and possibly an ear infection. She thought one ear looked red and gave a prescription for antibiotics to wait to fill if it didn't get better in 48 hours. She told us she could do a chest x-ray if we wanted. We declined, and we never did fill that prescription. The nurse also mentioned that whole milk is hard on the digestive system with vomiting and that we may want to switch to clear liquids while she recovered. We got home a little after midnight with a little lesson under our belts. We will always have to go to the Children's emergency room even for the most routine after hours medical care for our child, and our sweet child will throw up probably anytime she has a cough. Her system is just that sensitive. An exhausting and expensive lesson for our Monday night.
Olive was no worse for the wear though, sleeping until ten the next day. Thankfully she has the luxury of having her mother feed her while she's sleeping so we didn't throw off our routine. She was her joyful and busy self. Unfortunately Dain and I were not so lucky and we both ended up with the cold that seemed to hit both of us much harder than it did her (granted without the vomiting part.) But we are all ok. We still managed to find the time to fit in a lot of holiday fun between Thanksgiving and now. We cut down a Christmas tree, went on the Holly Trolley with Santa, decorated our house and tree, and made a gingerbread house complete with fairy folk. And we've listened to way too many Christmas carols for the likes of one guy. It has been a good December so far.
