Belly With Two Buttons

When Bryce was first diagnosed with EIEE 4, his neurologist told us he would likely need a feeding tube before he was six months old. Jus and I agreed that we would do everything we possibly could to make sure this NEVER, EVER happened. In our minds a feeding tube meant the beginning of the end. We naively believed it would only prolong Bryce’s life to more suffering and we didn’t want to do that to him.

How wrong we were! His feeding tube has, in fact, been one of the greatest blessings we have received. Bryce is THRIVING! We don’t have to worry about him becoming dehydrated. We know he is getting adequate nutrition. The stress of feeding time is completely gone for all of us. Honestly, I feel horrible for waiting as long as we did to get one.

Bryce's belly has two buttons!

His struggle to eat began the day he was born. He couldn’t latch on to me, but I wanted to nurse my baby so badly that I just knew he’d figure it out with a little more time. After five days he had lost one pound, was dehydrated and he still hadn’t figured it out. His pediatrician recommended we give Bryce a bottle for a day and record how much he ate. As much as I didn’t want to, I knew I needed to. By doing so, we learned two things: Bryce couldn’t latch on to the bottle nipple and he was only able to eat half the amount of food he should have.

That should’ve been a sign that I needed to stop trying to breastfeed, but I can be quite stubborn sometimes. For a little more than two weeks I continued trying to nurse Bryce. It was stressful! By the time I was ready to give up and bottle feed him, we finally figured out he was having seizures and spent five days in the hospital. During our stay, Bryce’s doctor and nurses encouraged me to continue trying to breastfeed. It did get a little easier, especially after he started taking Phenobarbital. He still couldn’t quite figure it out, but at least he was trying.

While in the hospital, we also started giving Bryce what Jus and I called “Fat Bottles” once a day. These Fat Bottles were two ounces of breastmilk fortified with Alimentum. By fortifying the breastmilk we were increasing Bryce’s calorie intake without making him work harder for it. He still struggled to latch on to a bottle so we ended up making the hole in the nipple larger so his food would constantly drip into his mouth and all he had to do was swallow. He always worked so hard to latch on and suck, and slowly but surely he figured it out (at least for a little while).

A week or two before the steroid. He was so skinny!

I returned to work when Bryce was eight weeks old, which meant I could no longer work with him all day to help him nurse. Although he still couldn’t latch on to the bottle nipple, it was so much easier for him to do than nursing. Now that he got a bottle half the day, he lost everything he had gained in regards to nursing. I’m not going to lie, this was very difficult for me to accept. For a month I continued trying to breastfeed. Most days all I did was try to nurse my baby, cry, and pump every two hours.

Then one very emotional day I finally realized that breastfeeding isn’t always the best option. Bryce and I had spent HOURS bawling together; me, because I had tried SO HARD to nurse him, and him because he was so hungry and just couldn’t do it. I finally said a prayer, begging my Heavenly Father to help us. Immediately I felt comforted and I realized I had given my best effort, but it was time to stop. Bryce didn’t need to breastfeed, he just needed to eat. From that moment on I pumped exclusively and gave my son a bottle. Although it was tough giving up my desire to nurse, it was worth it! Bryce finally started gaining weight and my mental and emotional health began improving.

Unfortunately this was only the beginning. Bryce started having Infantile Spasms around the same time I quit nursing. We put him on a steroid in an attempt to stop the spasms, which of course didn’t work and was scary to be on. Bryce had so many negative side effects! However, it made him very hungry. While on it, he was finally able to latch on to the bottle and actually suck to get the milk out! We were pretty excited about this, it was the first time he was able to eat without extra help! The bad thing was that he wouldn’t stop eating. Every time we took the bottle away, he had a complete meltdown! So we gave in and let him eat his little heart out, usually finishing 17 oz. every three hours! Needless to say, he ate the entire stock of breastmilk in a matter of days!

The steroid helped plump Bryce up!

Thankfully once he was off the steroid he was no longer a little piggy. And then his spasms came back. Bryce could no longer latch on to the bottle and it became very difficult for him to suck. Unfortunately, that was only the beginning of his troubles. He also started puking . . . and by that I mean projectile vomiting multiple times a day. His pediatrician wanted us to give him some reflux medication, but we were against it. You see, Bryce had been taking meds for reflux when he first began having grand mal seizures. We believed the medicine caused the seizures for it was listed as a side effect, regardless of what the doctors said. When he began projectile vomiting we knew the meds didn’t cause his seizures, but due to our previous and very stressful experience, we had a dislike for the reflux meds that we just couldn’t shake. Instead we decided to try burping him more frequently. It took a while to find the sweet spot, but we eventually discovered he needed to burp after every half ounce. Although this helped immensely, he still projectile vomited at least once a week. After months of burping every half ounce, we were able to slowly increase Bryce to two ounces before he needed to burp.

When he was eight months old we decided to give him pureed foods. He LOVED it! This new way of eating was so much easier and more fun than his bottle. Although he couldn’t play with the food on his own like typical children do, we could help him play in it (this was great stimulation for him). We made him so messy, it was so much fun! The clean-up was kind of a pain, but it was totally worth it! Some of his favorite foods were bananas, (mixed with anything), apples, butternut squash, green beans, avocado and venison!

The most difficult thing with the purees was getting the texture right. I have always made Bryce’s food myself. It was easy getting a smooth texture with the fruits and veggies, but pureeing meat is an entirely different story. If it had too many little chunks or was too grainy, Bryce would puke it up. I tried using my blender, food processor and my Magic Bullet Blender (which worked the best), but I still couldn’t get the texture right. Then, one day I had a deer roast in the crockpot with some onions, carrots, potatoes, celery and a few seasonings that I decided to try. I pureed the meat with the veggies, drippings and some hot water until it was as smooth as I could make it. Bryce DEVOURED it! After that, I tried using different meat and vegetable combinations, but venison was by far his favorite!

As Bryce got older, his ability to eat drastically declined. It seemed that each day it took him a little longer to finish a meal. By the time he was a year and a half we spent AT LEAST eight hours a day feeding him (and that was a REALLY good day). Despite our best efforts to help him drink he was always dehydrated, which of course caused other problems. Not only was he constipated, but peeing was a painful thing. He used to cry so hard and stiffen his body because it hurt so badly. He cried until he finally pushed it out, then he’d calm down.

The worst part though was that he constantly choked on liquids. This of course made him fight and both of us cried while trying to get him to drink. We guessed that he was aspirating, but we weren’t ready to fully admit it.  It broke our hearts to think of how hard we had tried to help him and how much he had improved, then regressed. A swallow study confirmed that he aspirated on liquids. We knew it was time for a G-tube, but we weren’t quite ready to give up. We tried thickening his liquids. It helped for maybe a day, then he was aspirating on those too.

Finally he became very sick and we knew we couldn’t put a feeding tube off any longer. We suspected he had caught pneumonia by constantly aspirating on his liquids, but thankfully we were wrong. We took him to see his pediatrician (the office is wonderful at getting us in ASAP if we call) and within a few hours Bryce had his NG-tube.

Through this journey of ours we have learned a few very important things. First, a feeding tube most definitely does NOT mean a person with one is dying.  It also doesn’t mean a person with one is lazy. Bryce tried so hard every day to eat orally, but it became dangerous for him to continue. Finally, it doesn’t matter how you feed your children as long as they’re getting fed.