My life as a Tubie Mommy
11/2/20
Anyone who knows me personally or has read my blog in the past, you know that my daughter has always had eating issues. I thought she was doing a lot better. She was eating a good variety of foods and was eating a decent amount everyday, with the occasional off day here and there where she would just want to eat snacks all day.
Right before her 2nd birthday, I noticed that she began to start refusing to eat certain foods. Foods that she normally ate a lot. At first I thought she was just going through a toddler fuse where she was just bored of eating the same things and wanted something new. But then she started to not eat another food that she normally ate and another and another and before I knew it, her list of safe foods was getting smaller and smaller.
Very concerned about this, I expressed my worries to her pediatrician at her 2 year check up and he recommended I see a feeding therapist. I was expecting them to tell me that my daughter needed feeding therapy once a week, but nothing could have prepared me for what they actually told me...
I told them everything that had been going on since Olivia was born. How she refused her bottles, how I had to start feeding her baby food early, how I had to sit with her and play music and feed her and put the food in her hands and do a bunch of other tricks just to try to get her to eat, sometimes sitting at the table with her for over an hour. How I took her to see a GI doctor who tested her for different things that all came back negative.
After five different doctors watched my daughter eat, ( by that time she hadn’t eaten anything in almost 5 hours so she actually did eat some snacks for them) They told me that there was nothing physically wrong with her. She Can eat, she just won’t for some reason.
At this time my daughter weighed 19lbs and was not even on the charts. The doctor’s told me that she was so underweight that she would need to eat double the amount of food just to catch up. They believed the only way she would be able to do that was by putting a feeding tube in.
I was shocked! I never thought it would get to that point and I didn’t really know anything about feeding tubes. I always thought feeding tubes were for people who physically couldn’t eat.
It was a lot to take in but even though I was nervous about the tube. I knew that I couldn’t go on being frustrated everyday. Wondering if we would have a good day or a bad day of eating. I was at the point where I dreaded feeding her everyday. I would have rather done anything else but feed her, because it was frustrating and upsetting when she wouldn’t eat and I was over it. At least with the feeding tube she would get fed whether she wanted to eat or not.
On September 21st we stayed overnight at CHOP and got her feeding tube put in. We ended up staying there for almost a week to practice putting the feeding tube in (in case it came out), checking her PH, setting up feedings, putting it the rate and dose, and cleaning it out.
The first 2 weeks were the hardest. Olivia was very traumatized from the hospital. She was too young to understand what was going on or why she suddenly had to have a tube up her nose. So everything became 1000 times harder to do. Things that normally wouldn’t upset her, she would freak out about. She did not want to take a bath, so I had to give her sponge baths for the first few weeks. She didn’t want me to change her diaper or her clothes. She wouldn’t let me trim her nails, I had to wait until she was asleep to trim them. I just had to be patient with her and try my best not to upset her too much. I did eventually get her to take baths again and she did let me change her again and everything else, it just took some time for her to get used to having the tube in.
The tube came out a few times the first week. Well, actually the one time the back part of the tube, the part where you attach the feeding tube broke off. Which I didn’t even think of that possibly happening, but because I couldn’t reattach it I had to change it. And the other two times it accidentally got pulled out because the tape on her cheek got loose. So after that, I started changing just the tape on her cheek every few days which helped a lot!
It’s still been a hard transition but I’m trying to live life as normally as possible. I still did everything that I normally would have done for the month of October including taking Olivia to the pumpkin patch, going on a hayride, craving pumpkins and going trick or treating. Olivia May not eat much, but she still really enjoys doing the activities and participating in the fun. When I had an Easter egg hunt for her back in the spring, she didn’t care what was inside the eggs. The eggs could have been empty and she wouldn’t have cared. All she cared about was finding the eggs. She kept wanting to find them over and over again. We kept hiding them all over the house in different places for her.
I’m just going to stay positive and make the best out of it and just live my life one day at a time. I’m just going to embrace being a Tubie Mommy. That’s what we are called: Tubie Mommies. Apparently there are a lot of kids who are tube fed because just like my daughter, they just don’t eat. I joined a group on Facebook and honestly, it made me feel a lot better because I don’t personally know anyone else whose child is on a feeding tube so when I go on there, it makes me feel not so alone because everyone on there knows exactly how I feel. I know things are going to get better, it will just take time.
Anyone who knows me personally or has read my blog in the past, you know that my daughter has always had eating issues. I thought she was doing a lot better. She was eating a good variety of foods and was eating a decent amount everyday, with the occasional off day here and there where she would just want to eat snacks all day.
Right before her 2nd birthday, I noticed that she began to start refusing to eat certain foods. Foods that she normally ate a lot. At first I thought she was just going through a toddler fuse where she was just bored of eating the same things and wanted something new. But then she started to not eat another food that she normally ate and another and another and before I knew it, her list of safe foods was getting smaller and smaller.
Very concerned about this, I expressed my worries to her pediatrician at her 2 year check up and he recommended I see a feeding therapist. I was expecting them to tell me that my daughter needed feeding therapy once a week, but nothing could have prepared me for what they actually told me...
I told them everything that had been going on since Olivia was born. How she refused her bottles, how I had to start feeding her baby food early, how I had to sit with her and play music and feed her and put the food in her hands and do a bunch of other tricks just to try to get her to eat, sometimes sitting at the table with her for over an hour. How I took her to see a GI doctor who tested her for different things that all came back negative.
After five different doctors watched my daughter eat, ( by that time she hadn’t eaten anything in almost 5 hours so she actually did eat some snacks for them) They told me that there was nothing physically wrong with her. She Can eat, she just won’t for some reason.
At this time my daughter weighed 19lbs and was not even on the charts. The doctor’s told me that she was so underweight that she would need to eat double the amount of food just to catch up. They believed the only way she would be able to do that was by putting a feeding tube in.
I was shocked! I never thought it would get to that point and I didn’t really know anything about feeding tubes. I always thought feeding tubes were for people who physically couldn’t eat.
It was a lot to take in but even though I was nervous about the tube. I knew that I couldn’t go on being frustrated everyday. Wondering if we would have a good day or a bad day of eating. I was at the point where I dreaded feeding her everyday. I would have rather done anything else but feed her, because it was frustrating and upsetting when she wouldn’t eat and I was over it. At least with the feeding tube she would get fed whether she wanted to eat or not.
On September 21st we stayed overnight at CHOP and got her feeding tube put in. We ended up staying there for almost a week to practice putting the feeding tube in (in case it came out), checking her PH, setting up feedings, putting it the rate and dose, and cleaning it out.
The first 2 weeks were the hardest. Olivia was very traumatized from the hospital. She was too young to understand what was going on or why she suddenly had to have a tube up her nose. So everything became 1000 times harder to do. Things that normally wouldn’t upset her, she would freak out about. She did not want to take a bath, so I had to give her sponge baths for the first few weeks. She didn’t want me to change her diaper or her clothes. She wouldn’t let me trim her nails, I had to wait until she was asleep to trim them. I just had to be patient with her and try my best not to upset her too much. I did eventually get her to take baths again and she did let me change her again and everything else, it just took some time for her to get used to having the tube in.
The tube came out a few times the first week. Well, actually the one time the back part of the tube, the part where you attach the feeding tube broke off. Which I didn’t even think of that possibly happening, but because I couldn’t reattach it I had to change it. And the other two times it accidentally got pulled out because the tape on her cheek got loose. So after that, I started changing just the tape on her cheek every few days which helped a lot!
It’s still been a hard transition but I’m trying to live life as normally as possible. I still did everything that I normally would have done for the month of October including taking Olivia to the pumpkin patch, going on a hayride, craving pumpkins and going trick or treating. Olivia May not eat much, but she still really enjoys doing the activities and participating in the fun. When I had an Easter egg hunt for her back in the spring, she didn’t care what was inside the eggs. The eggs could have been empty and she wouldn’t have cared. All she cared about was finding the eggs. She kept wanting to find them over and over again. We kept hiding them all over the house in different places for her.
I’m just going to stay positive and make the best out of it and just live my life one day at a time. I’m just going to embrace being a Tubie Mommy. That’s what we are called: Tubie Mommies. Apparently there are a lot of kids who are tube fed because just like my daughter, they just don’t eat. I joined a group on Facebook and honestly, it made me feel a lot better because I don’t personally know anyone else whose child is on a feeding tube so when I go on there, it makes me feel not so alone because everyone on there knows exactly how I feel. I know things are going to get better, it will just take time.
Life with a Tubie
11/22/20
Life with a Tubie is not easy. I have been putting a lot of things off in order to focus on dealing with all the changes that comes with having a child on a feeding tube. One of the biggest things I’ve been putting off is potty training. I originally wanted to potty train Olivia early. I bought a bunch of potty training stuff months ago, including a little mini potty, a potty seat, pull-ups, flushable wipes, books etc. I was so excited to get started and then I found out about the feeding tube and the potty training kind of took a back seat for a bit. It just seemed like too many changes at once and I didn’t want to set her up for failure, so I decided to wait a little bit longer. Now that we are starting to get more comfortable with it, I think it may be time to try.
I had a really annoying couple of days with the tube. My daughter gets tube feedings three times a day and a large feeding at night time, which is great if it doesn’t leak out. Most of the time, the night feedings go pretty smoothly. Olivia doesn’t usually move around that much and the tube usually stays in, but a couple of nights ago, that wasn’t the case.
The night time feeding starts at 10:30pm and is done by 6:30am. So at 10:30pm every night, I go upstairs and set everything up and start her feeding. Now the tube has leaked out before, so I take extra precautions now by taping the tube down.
I was so tired that night, I went right to bed, but it wasn’t long before I heard the most annoying sound in the world... And No, it wasn’t Jim Carrey screaming in the Truck in Dumb and Dumber! It was the high pitch sound of Olivia’s feeding pump beeping.
I jumped out of bed and ran upstairs to check on her. I do have a video monitor, but it’s hard to see every little thing at night, especially with her tent. She basically has a mesh tent in her crib to keep her from climbing out of it. Anyways, when I got up there the pump said “No Flow” because Olivia had moved and was laying on part of the tube. I moved her off of the tube, reset the pump and went back to sleep. At this time it was around 12:30am.
I was sound asleep when I woke up to the awful beeping sound again! I looked at my phone. It was 1:20am. I ran back upstairs and once again it said “No Flow” because once again, Olivia had moved and was laying on the tube. I moved her again and reset the pump again. Then went back downstairs and back to sleep.
The next time it woke me up it was 6:30am. Which meant it was beeping because the dose was done. I went upstairs to remove the tube and as I got closer to her crib I saw a horrifying sight! The dreaded, the “Oh Please God No!” Discovery of a puddle of Nutren Jr all over her sheets. Not only did she got get her full dose of her feeding, but now I had to put her in the tub, change her and change her sheets. The tube had somehow come out during the night. Sometime between 1:20am and 6:30am. How much Nutren jr she got? I don’t know. How much was wasted? I don’t know. But I was pissed! I had put tape on it and everything and it still leaked out! How?!
I really miss the days where I didn’t have to worry about night feedings or feeding tube problems in general. I try not to get too upset about it, but I do have my off days and this was one of them. Hopefully it doesn’t leak out again. I’ve been putting double the amount of tape on just to be sure.
At least she is gaining weight. 👍💪
11/22/20
Life with a Tubie is not easy. I have been putting a lot of things off in order to focus on dealing with all the changes that comes with having a child on a feeding tube. One of the biggest things I’ve been putting off is potty training. I originally wanted to potty train Olivia early. I bought a bunch of potty training stuff months ago, including a little mini potty, a potty seat, pull-ups, flushable wipes, books etc. I was so excited to get started and then I found out about the feeding tube and the potty training kind of took a back seat for a bit. It just seemed like too many changes at once and I didn’t want to set her up for failure, so I decided to wait a little bit longer. Now that we are starting to get more comfortable with it, I think it may be time to try.
I had a really annoying couple of days with the tube. My daughter gets tube feedings three times a day and a large feeding at night time, which is great if it doesn’t leak out. Most of the time, the night feedings go pretty smoothly. Olivia doesn’t usually move around that much and the tube usually stays in, but a couple of nights ago, that wasn’t the case.
The night time feeding starts at 10:30pm and is done by 6:30am. So at 10:30pm every night, I go upstairs and set everything up and start her feeding. Now the tube has leaked out before, so I take extra precautions now by taping the tube down.
I was so tired that night, I went right to bed, but it wasn’t long before I heard the most annoying sound in the world... And No, it wasn’t Jim Carrey screaming in the Truck in Dumb and Dumber! It was the high pitch sound of Olivia’s feeding pump beeping.
I jumped out of bed and ran upstairs to check on her. I do have a video monitor, but it’s hard to see every little thing at night, especially with her tent. She basically has a mesh tent in her crib to keep her from climbing out of it. Anyways, when I got up there the pump said “No Flow” because Olivia had moved and was laying on part of the tube. I moved her off of the tube, reset the pump and went back to sleep. At this time it was around 12:30am.
I was sound asleep when I woke up to the awful beeping sound again! I looked at my phone. It was 1:20am. I ran back upstairs and once again it said “No Flow” because once again, Olivia had moved and was laying on the tube. I moved her again and reset the pump again. Then went back downstairs and back to sleep.
The next time it woke me up it was 6:30am. Which meant it was beeping because the dose was done. I went upstairs to remove the tube and as I got closer to her crib I saw a horrifying sight! The dreaded, the “Oh Please God No!” Discovery of a puddle of Nutren Jr all over her sheets. Not only did she got get her full dose of her feeding, but now I had to put her in the tub, change her and change her sheets. The tube had somehow come out during the night. Sometime between 1:20am and 6:30am. How much Nutren jr she got? I don’t know. How much was wasted? I don’t know. But I was pissed! I had put tape on it and everything and it still leaked out! How?!
I really miss the days where I didn’t have to worry about night feedings or feeding tube problems in general. I try not to get too upset about it, but I do have my off days and this was one of them. Hopefully it doesn’t leak out again. I’ve been putting double the amount of tape on just to be sure.
At least she is gaining weight. 👍💪