Ellie has
been a strictly breastfed baby. It took us 6 months to perfect nursing and so I
was always nervous to bring a bottle into the mix for fear of messing things
up, and quite frankly I really didn’t have any need for her to have a bottle.
She is my baby and I wasn’t going anywhere. Besides, when she was ready I would
just feed her. No big deal. But as time passed and she became older, we knew we
would need to start introducing solids. It is a crazy mind trick looking at
your baby who is the size of and has the development of a 3 month old, and
being told she needs to be eating more than just breast milk.
And so we
began this extremely slow and difficult progression into food. I quickly realized this was so much more than
a big deal; this was horrific and has been our biggest challenge yet.
Babies do
not have much control over their lives. Sleeping, moving, toys, what they do
and where they go are all dependent on what the parent(s) decide. Eating, however,
is the one thing that they can control.
And the more you force or try to control the situation, the more
resistance you see. So to everyone out there who reads this blog and says,
“just put a spoon-full of food in her mouth and make her eat it!” (I was that
person thinking that too) know that it just doesn’t work that way. For us, feeding
has been the most complex issue imaginable with multiple layers of frustration
and angst.
The beginning of feeding therapy
Ellie has not independently shown any interest in eating
solid foods whatsoever. It made sense to me since everything else was delayed.
Why would feeding be an exception to the rule? I believe very strongly in the health benefits
of human milk. And despite her small physique, I do not believe Ellie’s size
has been dictated by nutrition but rather the underlying syndrome. Besides, it’s
not difficult to eat. We are all born with the skills to do so (so I thought).
When she was ready she would just open her mouth and eat. She would show the
same kind of interest as my other children did. I really thought this was the
least of my concerns.
However, I felt pressure from doctors and therapists to start
pushing solids. Because I knew in my heart that she was not developmentally
ready to take on anything other than breast milk, I was reluctant to begin
feeding therapy.
Fortunately, we have a wonderful occupational therapist (OT) that
started the transition at our pace. Her first step was crafting a special high
chair insert that would seat Ellie up high enough to reach the tray, with a
rounded back to keep her shoulders forward. We began by putting food on her
tray to play with. She would acknowledge it was there by scanning the tray with
her eyes and then while looking away she would put her hand in whatever it was.
I never understood how many senses were involved with eating and how Ellie
would shut down certain senses like vision to deal with the other senses
(smell, taste, texture). She was interested in what was on her tray but didn’t
want it anywhere near her face or hands unless she initiated it. Even a little frosting on my finger wouldn’t
tempt her (sometimes I wish I had the same restraint) so I didn’t want to push
her.
One step forward…100 steps back
The therapist and I decided it was probably time to try a
bottle. I filled it with pumped milk, sat down in our rocker and gave her the bottle.
To my surprise, she took an ounce. That
was easy!
Meanwhile I was having difficulty pumping and could not
figure out why. It was so foreign to me not being able to supply my baby with
enough milk to fill a bottle. I knew I couldn’t pump enough every day and
continue to practice feeding her a bottle. It was a hassle and why would she need to
practice? It worked!
One of many dieticians got involved and told me that I needed
to start supplementing her because my breast milk wasn’t enough at this age (1
year old!). That made me extremely angry and defensive. Here we go again, I
said to myself, another medical professional who believes the milk that was actually
intended for her is just not enough.
After several visits she begrudgingly came up with a vegan formula that
I could make at home that was acceptable at best to me. I knew it was nowhere
near as good as breast milk but I needed something to help supplement when I
couldn’t pump enough.
A few weeks passed since the success of the first bottle
feeding, so I decided to try out the homemade formula. I prepared the bottle, got comfortable in the
rocking chair and proceeded to feed her. Within 5 seconds, Ellie let me know
there was no way this was going to fly.
I couldn’t believe her reaction. It had gone so well before. Maybe the
formula just tasted horrible, so I tried the bottle again but this time with a
little pumped milk. Even with the pumped milk she would scream if I got it
anywhere near her. The only way I could console her was to get it out of sight.
I quickly learned that whatever nutritional requirements she needed was going
to have to solely come from me at this time.
A few nights later, we all sat down as a family to dinner.
She was delightfully engaged with a toy on the tray of her highchair when I put
a dollop of food down. Her thumb went in her mouth, she turned her head to the
side and refused to look at the food or anything else on the tray. It was only
when I removed the food that she would go back to playing with the toy.
Laying Low
After the whole bottle incident I knew I needed to respect
her for where she was at and back off. I started by putting a little water on
her tray because we knew she liked her bath and then slowly progress to purees
on her tray. It has been about 5 months now and Ellie will finally look at the food
on her tray again. She has even started to touch it once before deciding she is
all done. I also have been trying every bottle on the market with the hopes that
I will find that magical one she will love. So far we have been unsuccessful.
So I decided to take a step further back and order nipple shields with the
thought that if I could get her to nurse while dealing with the texture of
silicone, maybe it would allow for a smoother transition to a bottle nipple. I am
still trying to make this work.
Losing ground
During this
time of trial and error with bottle and solids, Ellie’s weight has slowly been
dropping. It has been very gradual, but still something that has weighed very heavily
on my heart. In the beginning I just thought to myself that she is sitting up
more and engaging more in toys, more “active.” But it became clear as time went
on that wasn’t the case. Every doctor’s appointment the weight would decrease
and the look of horror on the physician’s face would urge me to go in for an Ng/Nj
feeding tube ASAP. But I am not that kind of a mom that does something just
because a doctor says so, especially when she is an oral feeder already and in
the 50th percentile for weight-to-length. In fact, when I think of all the
procedures I have been told that are “medically necessary” for my child and
turned out not being the case, it is scary to think about where we would be If
I didn’t question everything! Ellie would have ear tubes unnecessarily. She
would have an Ng or Nj tube unnecessarily. She would have five times the amount
of blood drawn and many more x-rays. She would have the wrong type of glasses
with the wrong type of vision therapy. She would be undergoing growth hormone
therapy before even understanding what may be causing her not to grow, and she
would unnecessarily be on multiple medications.
Still,
something was not making sense to me and I fought so desperately to understand
why. And then it hit me like a ton of bricks: It isn’t that my breast milk doesn’t provide enough nutrients, it’s
that she is drying up my milk supply and slowly starving herself. She has such
low tone and cannot physically work hard enough to increase my supply or even
sustain it for a long enough time. That is why she only nurses for 5 minutes
and needs to eat every couple of hours. So I began to scramble: running
from hospital to hospital to rent a hospital grade breast pump, drinking
gallons of water, fenugreek teas and goats rue pills. Anything I could do to
make more milk and fast.
And then came the
“episodes”
We had a fun party at the park celebrating the end of summer
with all the children who are a part of the physical therapy office we go to.
It was a beautiful sunny day out and we were at a very familiar place. Lots of
kids showed up to the festivities and I had my three kids in tow.
At one point they were all in swings next to one
another. Our vision teacher happened to
be there and came by to chat. She took over my position of swinging Ellie and
shortly after said, “I think Ellie is shutting down, let’s move her out of the
sun.” Shutting down, I had no idea
what that meant, so I just went along with it.
After the picnic I took all the kids home for nap time. As I
went to pick up Ellie to nurse her I noticed that her tongue was out even
further than usual, her shirt was soaking wet and she refused to nurse. I struggled for about five minutes trying to
get her to nurse but my efforts were futile. She wasn’t going to eat and there
was nothing I could do about it.
Later on that evening she picked back up on her normal
routine of eating throughout the night every 2 hours or so. Morning came all too quickly. I went to nurse
her as we were heading out to therapy appointments and it started again. She refused
to eat. I thought to myself that I would just wait until I got to our
destination and try again. 8 hours later, she still had not eaten. I didn’t
know what to do.
With every failed attempt I grew more scared. Her face was
vacant, her tongue hung out and her bib was drenched. Our OT was concerned and
called often to offer suggestions and be a source of support. She said to give Ellie plenty of vestibular and
proprioceptive input (deep pressure and movement to help her body understand
where she is in space). Terms I had
never really understood until now.
At nighttime though, Ellie would go back to eating throughout
the night and by 10:30 am the following morning would go on an eating strike
for 8+ hours. This lasted for three days! At one point, I had pulled over to
the side of the road, three kids in the car, crying and begging her to eat
while I aimed milk into her mouth hoping that if she just tasted it, she would
snap out of it. She didn’t and we just
had to wait it out.
We have had six of these episodes in the last two months. All
I kept thinking was she has to eat. She is already losing weight and can’t
afford to go another minute without food. I knew our next GI doctor’s
appointment would be a difficult one…
Medically necessary
He walked into the room and his first words were, “This is
horrible and I am not ok with this. Something needs to happen now! I want to
see how she responds to extra calories before we do something more permanent
like a G-tube. She needs an Ng/Nj tube.”
I had heard that the therapist and even the doctor himself had
voluntarily had one of these tubes put in and described it as the worst thing
they have ever experienced. SO, unless
it was medically necessary, I was 100% against it.
It wasn’t making sense to me. She was always eating. She was
still in the 50th percentile for her weight-to-length. Why would we
put in a feeding tube at this point? She was eating every 2 hours around the
clock and I was working hard to increase my milk supply. This child is not missing
any meals. I agreed with adding more nutrients to her diet but not just fat and
oil to increase calories and not by way of a feeding tube up the nose that
hangs into the stomach or intestines. I did not feel that I had exhausted all
options, and I wasn’t about to give up.
CPS
Just when you think things couldn’t get any worse, or that
you as a parent are entitled to make your own decisions regarding your
child…well, it doesn’t exactly work that way.
The last thing in the world that I wanted hanging over my
head was the very real fear that if I denied certain medical opinions, the doctors would call CPS on
me. I was told by several therapists that this has happened to other families
before me, and it is an unfortunate possibility I needed to be aware of, since
I am refusing an Ng/Nj Tube. Now I would like to say that I in no way believe
that anyone could prove that I am not 100% on top of things when it comes to
Ellie’s care, so I never was worried that it would turn into anything. What I
have been worried about is the fear of someone taking her from me before
investigating our situation. Having not
had a diagnosis, it is hard to explain why your child is not growing. The first
thought is to look at the parents for why she isn’t thriving. I knew in my
heart that she wasn’t growing in length due to the underlying syndrome, but I just
couldn’t prove that with anything measurable.
Feeling the pressure
My husband
is such an amazing man. I love him so much and he puts in 100% for this family
of ours. Along with giving so much to the welfare of our family, in return he
is oh so busy. This really is two-fold. It allows me the ability to attend most
of the doctors’ appointments without my other little children in tow, but that
also means without him as well. And as soon as I get back, he has a schedule
lined up with 3 jobs and going back to school. Plus, I am usually so exhausted
from trying to digest all the information and medical terminology I just
learned, that explaining it would just take too much out of me and hearing it
would just take too much out of him. His head needs to be focused right where
it is because it is for the benefit of our family…but sometimes it leaves me
feeling scared, pressured and alone. He is counting on me to make the best
decisions for our child. If I fail, not
only do I let down my child but I let my entire family down.
Searching for support
and breast pumps
Thank goodness for SWAN USA. Not only do these amazing moms
(and dads) offer emotional support, but also some really great out of the box
ideas. One of my favorite mamas had mentioned an SNS (Supplemental Nursing
System). With this system, you put the breast milk or formula in a little
bottle that ties around your neck that has very small tubing you tape to your
chest that runs down to the nipple, so when the baby latches on, she is getting
both the breast and whatever you are supplementing with. I had
to make this work. But despite all
of my efforts to increase my supply, I was not able to pump enough and nurse
her. I had to supplement with our homemade organic formula of rice milk,
coconut milk, flax seed oil and vegan brown rice protein powder that the registered
dietician had come up with. AND IT WORKED!!!!!
The SNS System
Feeding Guru
While trying to exhaust all options, our OT put us in touch
with a very well-known and respected feeding therapist. She was definitely
worth the 4 month wait and we are privileged she even decided to see Ellie. We
spent an hour and a half talking about Ellie and all her complexity. She
suggested a feeding study to help us better understand what we were working
with. I loved this idea.
For this feeding study I needed to track down a hospital
grade scale and weigh Ellie before and after feedings to calculate the amount
of milk/vegan formula she was taking in. I started that night and for 5 days around
the clock I would feed and weigh her. The results were astonishing. Not only did
this confirm my fear of reducing my supply but she was only taking in about 12-15
ounces of milk per 24 hour period!!! I also had a lot of luck with the SNS
feeder that I would run the formula through while nursing. By the end of the
study she had gained 6.6 ounces and has since gained over 2 lbs in a month! HUGE
accomplishment and I am so glad this worked.
Here is what a sample day looked like:
|
Time
|
Length of Feeding
|
Starting Weight
|
Ending Weight
|
SNS Formula Amount
|
Breast Milk Amount
|
Total Intake
|
|
|
|
13lbs 12.9oz
|
DAY 1
|
|
|
|
|
7:05pm
|
5 minutes
|
14lbs 7oz
|
14lbs 8.2oz
|
0
|
1.2 ounces
|
1.2 ounces
|
|
11:10pm
|
12 minutes
|
14lbs 7.6oz
|
14lbs 10.8oz
|
1.5 ounces
|
1.7 ounces
|
3.2 ounces
|
|
3:40am
|
10 minutes
|
14lbs 10.2oz
|
14lbs 11.2oz
|
0
|
1.0 ounce
|
1.0 ounce
|
|
7:30am
|
10 minutes
|
14lbs 12oz
|
14lbs 13.6oz
|
0
|
1.6 ounces
|
1.6 ounces
|
|
9:30am
|
13 minutes
|
14lbs 7.4oz
|
14lbs 10.4oz
|
2.0 ounces
|
1.0 ounce
|
3.0 ounces
|
|
10:45am
|
10 minutes
|
14lbs 11.4oz
|
14lbs 12.4oz
|
0
|
1.2 ounces
|
1.2 ounces
|
|
1:10pm
|
20 minutes
|
14lbs 6.6oz
|
14lbs 9.8oz
|
1.8 ounces
|
1.4 ounces
|
3.2 ounces
|
|
3:50pm
|
10 minutes
|
14lbs 9.8oz
|
14lbs 11oz
|
0
|
1.2 ounces
|
1.2 ounces
|
|
6:45pm
|
8 minutes
|
14lbs 7oz
|
14lbs 10.8oz
|
2.0 ounces
|
1.8 ounces
|
3.8 ounces
|
|
|
|
13lbs 13.9oz
|
|
7.3
TOTAL
|
12.1
TOTAL
|
19.4
TOTAL
OUNCES
|
Winning! Just Kidding
At our next appointment our GI doctor said he no longer
believes an Ng/Nj tube would be necessary. Thank goodness!!! As proud as I was
to see this kind of improvement, as was the doctor, we still needed to look at
the bigger issue. She was clearly benefiting from the extra calories. She was
refusing foods, textures, and bottles. She not only needed to be trying new
foods but she needed to take in a life sustaining amount of them. All this meant was that it was time to think
about a G-tube. Simply hearing the words set in motion a nasty string of panic
attacks. With any talk about a feeding tube, I could feel my chest getting
tight and the pain was excruciating. This is what I had been working so hard to
avoid. I was exhausted, had nothing but coffee running through my veins, was nursing
around the clock, having to be on top of my game at every doctor’s appointment
and not to mention be there for my wonderful husband and other two amazing
children…I was losing ground. I left the GI doctors with a heavy heart. It
still wasn’t making sense to me. She was now at the 60th percentile for her
weight-to-length, her weight had increased 2 pounds, and she was taking the SNS
system and thriving. Everything was working, why change it so drastically?
Ellie’s World:
Homemade Hell
And then the tears came. Not just from me but from Ellie too.
The formula was constipating her and causing fissures in her colon. She would
scream every time she had a bowel movement and I would find a diaper full of
blood. This had to stop fast. The doctors suggested putting Miralax in her
formula. In my mind that wasn’t an acceptable long term solution: formula mixed
with drug?! And her weight keeps increasing… and fast, but not from a healthy
diet, from added oil. This was something else I was not ok with.
My fear for Ellie was that she would keep gaining at this
rate and start to lose the little bit of mobility that she has. If she already
has low muscle tone, I don’t see how extra weight will help her. Increased
weight should be coming from new muscle and cell growth. I began to feel
nutritionally rushed to do something. Do I continue buying time and paying the
price with her nutrition by supplementing formula through the SNS OR do I put
her through this very scary and unnatural way of feeding to optimize her health?
Do I wait it out in the hopes that we can turn her into an oral feeder or am I
just delaying the inevitable? Do I wait for the panic of nutrient deficiencies
and malnourishments to force us into a G-tube? Or do I go willingly with the
plan of starting a healthy blenderized organic vegan diet while she is well
nourished…even if that means getting it in a less traditional approach? If we
have already seen cognitive improvement from the formula wouldn’t the benefits
of a healthy diet be unimaginable?
One last ditch effort
In our one last ditch effort to avoid the G-tube, my husband
and I thought we could concoct some way to use the SNS system with a blenderized
diet. I got a large syringe from the nutritionist and then went to the pharmacy
to find some sort of tubing that would be big enough for blended food to flow,
but not so big that it would choke her. I taped it to me as I began to nurse
Ellie while slowly pushing the food through the syringe into the tubing and into
the back of her mouth. I watched very carefully her suck, swallow, and breath
pattern to time it just right when I would administer the food. Unfortunately, this
homemade system was not successful.
A moment of truth
I realize
that despite all of the opinions we are getting from all of the different
professionals we have working with Ellie, ultimately we are going to have to
make this very real and very hard decision ourselves. So with extreme
hesitation, we are choosing to put nutrition first. The G-tube surgery will
require 3 days in the hospital and is scheduled for tomorrow. We will continue
working hard on feeding therapy and will make it our goal to alleviate the need
for a feeding tube. This is so scary and seems so unnatural. I look at my baby’s
beautiful belly and think: surgery, anesthesia, hole, scar tissue, granulation
tissue, leaking fluids, having to replace the tube and put it back in her if it
gets pulled out. She will be dependent on unnatural machines to do something as
seemingly natural as eating. My heart is
heavy and I pray this is the direction we are meant to go in.
