Lots of Progress and a Pokey Eater

Today was my original due date with Olive. I still sometimes think to myself that this is the week I should be planning a third birthday party and celebrating my spring baby. Of course, we did all of that, only back in January. So instead I'm focusing on all of the progress that Olive has made as we reach the three year adjusted mark. And on May 3 in honor of the day we brought this kid home, we will bring treats to the doctors and nurses in the NICU and the Ronald McDonald House to thank those who took care of Olive and to provide a tiny ray of sunshine for other families that are trudging through the dark days of having a hospitalized child.

Olive's footprints on her birthday and her due date.

We visited Children's once already in early April for Olive's NICU follow-up clinic appointment. I look forward to this visit every year as we get to meet with our favorite neonatologist, Dr. Hoekstra, who cared for Olive when she was at her sickest. It also serves as a time to check-in with her developmental progress as they administer the Bayley test to ascertain where she stands in relation to her peers in the areas of cognitive development, language and motor skills. This is the first year that Olive has been a willing participant for all of it, which was an incredible change from even a year ago when she screamed and cried and threw up multiple times in protest. This year provided good news all around. She is healthy, and she is developmentally normal. She tested at or above her actual age for all areas. Most notably, in the past twelve months, she has made massive strides in the areas of expressive language and gross motor skills to the tune of a 17-19 month leap on the test. Last year they recommended formal speech therapy for Olive's expressive language delay. This year she was described as having excellent articulation and vocabulary with language skills that are nicely above expectations. Yet another example of Olive taking her sweet time and working on her own schedule. That's our girl.

Anxiously awaiting her developmental test at the NICU Follow-up Clinic.

I truly have nothing to complain about as a mother. Olive is doing really well. She finally hit the 25 pound mark, clocking in at around the third percentile. Obviously still small but she chugs along on her own little curve. The little Olive that could. According to her dietician she gets about 1500 calories a day between the small amount she eats orally, the milk she drinks, and her tube food. And she spends all day trying to burn every single calorie. The girl is non-stop.

This month also marked the first time I've ever left her anywhere. She started big girl school as we call it. It is only one day a week for an hour and a half, but that's a big step for us considering we've only ever left her with three other people in her whole life. On the first day, she calmly gave me a hug and ran off to play. Meanwhile I was a complete mess walking away from her for the first time ever. She did amazingly well, and she looks forward to it every week. It bodes well for preschool this fall which will be three days a week. It will only be two and a half hours per day, however, meaning she will not need to be tube fed at school thankfully. Instead, she'll get to enjoy it as a typical kid and be able to sit down for snack with her peers. Hopefully it will motivate her to want to eat.

She still very much prefers milk in a "little bottle," but we are working on an open cup.

In other positive news, at her eye exam this week her doctor told us that at this point she will have no lasting effects from the eye disease (retinopathy of prematurity) that she had as a baby. Her eyes are healthy, and her eyesight is that of a typical three year old. We couldn't ask for better news. Also, upon her third birthday she was discharged from our local ECSE (early childhood special education) program that provided intervention services to her from the time she came home with an educator, occupational therapist and speech therapist making home visits. She didn't meet any of the criteria to continue to qualify for services as she is a typical three year old from a developmental standpoint in the areas that they look at, and she doesn't have any of the conditions that automatically qualify a child for services.

Obviously this is all great news, but it leaves us in an odd spot. We have a child who is basically kicking ass and taking names in all areas but one. And to us it's a BIG FREAKING DEAL, but everyone else is not that concerned in light of the fact that she is happy, healthy and well-nourished with documented growth and developmental progress. She just doesn't eat. Details right? The fact that she remains tube dependent is almost an asterisk in her medical record at this point. I've never heard a medical professional articulate Olive's problem any better than Dain or I can. It's typically something like "g-tube fed as a result of extreme prematurity." I get the overwhelming feeling that she is an anomaly in that there is no greater underlying reason as to why Olive doesn't eat. She doesn't aspirate. She doesn't have a digestive disorder. She doesn't have any food allergies. She doesn't have any sensory issues. She just lacks the skill, motivation, and desire to orally eat.

Olive's first day of big girl school.

It's frustrating as parents because there just aren't that many resources out there for children like Olive. We don't personally know anyone else that is in a similar situation to us, and there are no local support groups for parents of tube fed kids that we know about. In fact, people who should know exactly what to do with a child like ours (like the gastroenterologists that insert feeding tubes or the pediatricians that recommend them in the first place) have no clue what to tell us in regards to how to ever get it out. But the beat goes on and so do we. I'm in the process of fighting our insurance company (again) to get the one therapist (of about 10-12 that we've seen) that has been helpful to us to be covered as an in-network provider. I'm hopeful that we may be able to get her services approved and make some bigger strides this summer with a little professional help. Otherwise we are going to have to rethink our plan and try other in-network providers. The problem is that very few speech pathologists or occupational therapists specialize or have any sort of expertise in feeding problems in children with long term g-tube dependence. The lack of resources in a major metropolitan area suggest that it is clearly not that common of a problem, and we've heard from people in the field that it is a relatively new area of study as more and more children are surviving extreme prematurity thanks to medical advances.

Enjoying a "lizard" as she calls it. She'll take 5-10 licks of ice cream.

We've been going it alone since coming home from Virginia in November. Party of 3. Every day. Every night. Every. Single. Meal. I'm not going to say that it's not exhausting to be working on oral eating and skills like drinking from an open cup while still doing all of the other tasks necessary to keep Olive nourished through her tube. I spend more time with our blender than I do with any human being besides Dain or Olive. It gets old. We get frustrated. We've been talking about needing a vacation for as long as I can remember...one without dishes or a blender. BUT everything we do is working, albeit very slowly.

The aftermath of a meal with Olive.

Olive is improving her oral skills. In the past two months, she has started being able to eat more and more foods. Does she eat very much? No. Does she do a good job chewing? No. But she has come a long way in dissolvable foods. She will finally let things stay in her mouth long enough to melt so that she can swallow them. We've added so much to this list of foods: Pirate's Booty, vanilla cupcake goldfish, soft cheese, mini vanilla wafers, cheerios, golden grahams, and sweet tarts to name a few. She still routinely gets overwhelmed by even soggy pieces of her food and has her moments where she gags and sometimes throws up trying to get something out of her throat. She recently had a mouthful of a chicken/artichoke/pasta bake that she was moving around for awhile. But when it all dissolved she panicked, gagged and threw it up. She then promptly looked at me and exclaimed "Mmmm, that chicken was so yummy mom." So clearly she is unfazed by her skill set. She goes right back to it, which is really all we can ask at this point.

Sampling a s'more in the backyard.

We offer her a plate at dinner time, and we all sit down to eat. But I've found that it's more effective during the day to be more casual about it. When I'm eating breakfast or lunch or having a snack, I set out food for Olive in a bowl or on a plate, and I let her graze. I don't make her take tastes or dictate her interaction with the food. And it works a lot better to have it be on her own terms, which is true of most everything with a three year old. It's still very much a messy endeavor for Olive to be eating, but she's slowly improving and becoming more confident in her skills. All we can hope is that she continues to eat more and more. Chewing is the next big hurdle as it would obviously cut down on the choking, but she really hasn't mastered the concept yet. Hard foods are still mostly impossibly for her to do anything with other than lick or suck on, but she is getting better with thicker liquids (like soup) and her go-to soft foods like goat cheese. She will finally use a spoon correctly with some help and actually put the whole spoon in her mouth, round her lips, and eat food off of it. So while it is sometimes hard to see on a daily basis, we are making progress with this pokey eater.