Our Battle with Feeding Our Newborn Son

Feeding…it is the one thing a parent should be able to provide for their child. It’s something most parents don’t even think twice about. So what are you supposed to do when your baby has issues with feeding? It is not only a constant battle, but an emotional rollercoaster with the guilt you feel for not being able to provide the one basic thing a mother should be able to do.

 

This is our story

 We have struggled with feeding since Jacob was born. Besides his jaundice and hypoglycemia, feeding was the main issue we were still in the NICU. His large tongue was preventing him from properly latching on to both bottle and breast and he was loosing weight fast. This was a concern to the doctors because he also had low blood sugar, which they couldn’t stabilize if he wasn’t eating. He was hooked up to IVs and a NG-feeding tube. The nurse calmly explained the procedure as she showed me the spaghetti-like tube. “He’s not going to like this”, she warned me, “but once it is in place they usually don’t feel it”.  

I cringed as I held his squirming body when they placed the tube in. Another day of watching my baby being tortured. I knew it was necessary, but not an easy experience for any mother. It is our God-given duty to feed our babies. Isn’t that what breasts are for? Then why am I not able to do the ONE thing I was made for? To nourish this little thing I gave life to. These nagging feelings of guilt ate away at me every time I googled for breastfeeding tips and saw these beautiful pictures of mothers and their babies. I yearned for that bond and instead my newborn was receiving nourishment from a tube.

Beckwith Wiedemann Syndrome feeding tube NICU macroglossia mybwsbab.com

Day in and day out, every 3 hours the nurses came in to wake Jacob for his next feeding. We were given 30 minutes to bottle feed him and anything that was not finished beyond that was given by tube. We fought to keep him awake, watching the clock tick, and my stress level rise with each passing minute. He didn’t want to eat, he was enjoying being held, which they only let us do during feedings (since he was under the bili-lights), and it was heart wrenching having to force feed my newborn when all I wanted to do was to feel his warm body close to mine and rock him to sleep. It was a mother’s dream, my dream, and it quickly ended as the clock ticked on. The nurse would come in and check on us, as she nicely reminded me that we would need to use the tube if he hadn’t finished his 60ml bottle. We were lucky if he would even get ¼ of that in his tiny little tummy.

“Please Jacob, you must eat. It’s okay, Mommy is right here”. I tried to talk to him in my soothing voice, not wanting him to feel my stress as I watched the clock tick closer to 30 minutes. Some days, I was not as strong, and I broke down in tears. And cried. I just cried and held my baby, all hooked up to wires. Everyone else was celebrating Christmas at home and here we were struggling to eat just 1 ounce. It seemed endless.

 Feeding Jacob under the bili-lights

Feeding Jacob under the bili-lights

 

We tried everything from special needs feeders to different size bottle nipples and even a variety of flow rates. Nothing was working. Ryan came to the hospital one night after work. I had been by Jacob’s side the entire time and refused to leave. The sleepless nights and stress were finally wearing my down. I had bags under my teary eyes, hadn’t showered, and barely eaten a full meal in days. Ryan finally convinced me to go home, shower (probably because I stunk to high heaven), and get a good nights rest. Ha! I was a complete mess leaving the hospital. People probably wondered who the crazy person was crying down the hallway as I walked to my car. I’m surprised no one called security thinking a psychiatric patient had escaped! I made it to my car and cried the entire way home. I called Ryan frantically asking for updates on Jacob, and of course everything was going just fine. Jacob was still sleeping. I decided to freshen up before bed and before I got too comfy, I looked at my phone to find this picture.

 My First bottle

My First bottle

 Always smiling

Always smiling

I could barely compose myself. I was so happy that tears began to flow down my cheeks. “Thank you God, Thank you God.” There is a light at the end of this long dark tunnel. Jacob had eaten a full 60ml bottle (that is about 2 whole ounces). Of course Daddy was happy too and Ryan was my hero. I can not describe the feeling I felt at that moment seeing him so happy after eating his first full bottle. As if he was saying, “Mommy I did it!” The next week, the feeding struggles ranged from being difficult some days and easier others. The doctors were still writing “Failure to Thrive” on his chart. It made me so mad to see those words. He is breathing, trying to eat, and putting up with all the pokes and prods…he is doing damn good thriving!

 

We were finally discharged from the hospital, but the feeding battle didn’t end there. It was stressful making sure he ate every 3 hours around the clock. They had him on a special extra calorie formula which was very thick. Jacob wasn’t hungry, and yet the nurses were instructing us to force feed him every couple hours. It felt like torture having to get those feeds in his belly, which sometimes took up to an hour. At times, I cried right along with him as I rocked him and pleaded for him to take just a few more sips.

The feedings eventually grew easier, and we discovered the Tommy Tippee bottle worked the best because of the wide based nipple, he was able to wrap his tongue around the bottom in order to latch on properly. The other bottles we had tried were not wide enough and his tongue was below the nipple ring, so when he tried to make the sucking motion, no milk was being pushed out by his tongue.

 The wide nipple base of the Tommy Tippee bottle

The wide nipple base of the Tommy Tippee bottle

At 6 months, he finally qualified to have a tongue reduction surgery to help with his feeding and breathing issues. You can read more about our journey with TR here

It has been 3 months now post-op and we are still struggling with eating. Yes, it has definitely improved, but we are still battling every bite of pureed food. Some days he does great, other days he chokes and coughs, and becomes so frustrated that he stops eating. He wants to eat, he is so hungry, but can’t seem to overcome the gag reflexes. I am thinking it has to do with sensory, and the fact that he is still re-learning how to use his tongue post surgery.

We have been fighting the insurance and the state to get feeding therapy. It has been a long battle so we decided to attend a conference on feeding for parents and medical professionals at our local hospital.

The conference was put on by Feeding Matters (www.feedingmatters.org) an organization that was built around advocating for parents. Their provider search list is worldwide and they even offer parent support. I am beyond excited to have found them and I hope this will lead us in the right direction in terms of feeding.