A Full Tummy and a Heavy Heart

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 50^th 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.