We began overnight continuous feeds recently and it’s been such a game changer! Isabella has trouble gaining weight and was once slapped with the terrible diagnosis of “failure to thrive.” There are many reasons why she can’t eat by mouth, but for this post I’ll focus in on what an overnight continuous feed looks like for us.
Disclaimer: All of the feed rates/information is specific to Isabella and Isabella only. We receive recipes/directions from a Gastroenterologist and Dietician. If you would like to try continuous feeds, please connect with a medical professional.
I absolutely love the cute Honest Company diapers with the apples. We haven’t been able to share the wonder and beauty of Fall with Bella outside, but have decorated and used fun Fall things around the house…like these diapers.
Getting Bella Ready For Bed
Before bed, we put Bella in her pajamas and hook her up to her extension set. (I read it was best to attach the tubing to her diaper. I’ve gone away from that because we change her diaper throughout the night.) What you see here is her Mini One Feeding Tube attached to her extension set. We then give meds and her feed through the extension. The extension is good for an entire week. The feeding bag, which is filled with formula and attaches to the pump, is only good for 24hrs. (Yes, we throw away a pump bag and tubing every single day. It’s a crazy amount of waste).
The First Night
For the first night I had Bella sleep right next to me. I was very nervous about her strangling herself, pulling her button out, or vomiting and choking/aspirating. Here you can see Bella is hooked up to the pump tubing, IV pole, and extension set. It went amazingly. She didn’t even vomit! I woke up a lot of check on her but she seemed so happy and content. When I woke up I realized I had gotten SO MUCH SLEEP and so had she. It was crazy. I’m used to only getting 5 hours, interrupted. To switch to 8 hours was a massive blessing.
Why Do Overnight Feeds Help Isabella?
Overnight continuous feeds work well because Isabella has GERD (severe acid reflux) and a premature GI system. She is unable to take large volumes of formula at a time via feeding tube without throwing it up or being in pain. The goal of a continuous feed is to ensure she gets the nutrition she needs. The hope is that the very tiny amount of volume she gets per minute will be tolerated well and she will be less likely to vomit with less in her stomach. It also helps that she can rest uninterrupted.
Of course this is an added bonus to us! We have been on a “newborn” schedule until now (7 months) and her feeds were taking us a minimum of an hour and a half. We would need to hold her upright for an hour during the feed and then another 30 minutes to help prevent vomiting. Even then she would throw up quite a lot. To be completely honest we would bring ice packs to bed with us while feeding her to stay awake. We would blare our TV and talk to each other or watch movies. We couldn’t fall asleep during her feeds and it was very exhausting. At the time when her vomiting was at its worst we were feeding her 8x a day. To do the feed, hold her, prep the pump, etc, it was 2 hours each time. We literally spent 16 hours a day feeding Bella.
Setting Bella’s Pump, How Does It Work?
The pump can be set for different rates and amounts of volume for her to receive. For Bella, we give her 30ml of a specific formula custom for her every hour. That’s 1/2 an ounce an hour. Or, 1/2ml per minute. It’s basically like an IV drip, only with formula. We allow this to run from 10pm until 9am. The formula is good to be hung for 4 hours. We wake up 2x to refill the pump bag with fresh formula mixed up and prepped in the fridge.
Why Do You Wake Up?
We wake up at 2am and 6am. At this time we rewarm a bottle and add the liquid to the pump bag. We also check on Bella’s tubing, change her diaper, and check for leaking. At 2am I also give her a medication that I push through her tubing with a syringe. At 9am (or later if she’s still sleeping and we can squeeze a bit extra formula in) her alarm on her pump will sound and I will turn it off. The alarm sounds if the bag is empty, but we set our own alarms. We certainly don’t want to forget to refill the bag or else the pump will pump air into her belly! That can be very painful for a little one. Above you can see that her Gtube sometimes leaks. We have to change her outfit and sheets when this happens.
Does She Still Eat During The Day?
Yes! Bella still gets fed 3x during the day. We give her 75ml over an hour at 12pm, 4pm, and 8pm. She gets a little over 1ml an hour. She tolerates it rather well and usually just naps during the 12pm and 4pm feed on my chest. I still have to hold her upright for an hour and a half. Then, at the 8pm feed she falls asleep and stays asleep for the rest of the night. Of course we accidentally wake her to take her to bed and “hook her up” but she usually just groggily smiles and then falls back asleep.
I love feeding Bella. It’s a very special time. She snuggles up and I have an hour and a half to just be cozy with her. In the beginning I had to do this A LOT (8x a day shared with Dustin). That made it hard to do anything, including making insurance calls and eat. Now it’s only 2x a day and Dustin does 1. This 3 hours is helpful to slow down and rest. Above is my setup for Bella’s feeds. I’m tethered to her and her pump so I make sure to empty my bladder, get anything I want nearby and get comfy! I just finished a fun book called Girl Wash Your Face.
Overnight Feeding Has It’s Challenges
So, sleeping almost all night and not waking up every few hours is amazing. It’s so crazy awesome. BUT, there are some challenges with overnight feeds.
Bella moves around a lot and can pull on her button.
We alter her sleepers if they don’t have snaps by cutting a hole in them for the tubing. I run these down her leg to help keep her from tugging on the tubing or getting it caught around her neck. It’s actually pretty hard to find a ton of snap sleepers that are warm! So, we use zipper ones and just alter them ourselves.
We just recently began running the tubing through an empty paper towel roll to help keep it from away her head.
Sometimes if the button is pulled she leaks all over herself and the bed. We have to change out her clothing and the bedding.
The friction on her button causes her to break out. She can get skin breakdown near her stoma (stomach hole). So we have to keep bandages on it and rash cream to keep it from bleeding.
Sometimes I worry about her silently aspirating the formula into her lungs. If she does it silently after vomiting, I have no way of knowing or stopping the pump if I’m asleep. I’ve had to simply give this fear to God and trust that Bella is big enough to turn her head and spit formula out.
Overall, It’s the Right Choice For Bella
Continuous overnight feeds has certainly helped Bella so much. She still vomits at least once during the night or morning, but it’s not a lot of formula! Sometimes she’ll go all night not vomiting and will simply wake up throwing up a small volume! I don’t even have to change her bedding. For us, this is awesome. She was throwing up 5+ times a night before and not gaining the weight she desperately needed. Now, she seems to be hitting new milestones and seems to rested. We’ve put off continuous feeds during the day, to keep her from being hooked up all the time, and hope we can keep avoiding it by doing this. We can also avoid certain medications to empty her stomach quicker and a GJ tube which puts formula into her small intestine!
Also, note, our bed is made! Thanks to the extra sleep I was getting. I can’t remember when I took the above pictures, but you better believe the bed is made now almost every day thanks to the restful night and clean bedding with no throw up!
Love & Light, T
