I never should have called Baby GL boring. He made up for it this week. We have been battling how to change his feedings. If it was up to the doctors Baby GL would be on a tube feeding for another 6 months or more. Well, as the parents we are woken up midway through the night by our child screaming. His schedule has been nursing and oral feeds during the day then tube feedings into the jejunum part of the tube which directs the milk into the intestine. It completely bypasses the stomach leaving him feeling very empty and hungry. After all day eating he gets hungry at night even though he's get a full feed.
To try and combat this I decided to try feeding him into the gastric part of the tube Friday night. It would be just as he had all his time in the hospital, everything going to his stomach, just in smaller amounts over a longer period of time. It was a very successful weekend doing the feeds this way. He went three nights without any major issues. He still deals with the gas and I think he gets full towards the morning without having a break in the feedings, but otherwise I feel he felt better.
One thing we started noticing more of was a leak in the tube which was a whole another issue. I've noticed in the past that the jejunum port doesn't have a really tight seal so I would find yellow stains on Baby GL's clothing. Especially over the weekend, with not using it, I noticed it even more. It's disturbing because you wonder what is it that is coming through the tube. With his gastric feeds I did notice a little milk coming through the jejunum, but still with a yellow substance, too. I ended up taping the port closed to prevent the leaks which could only be a temporary fix.
The nurse came on Monday as she does weekly. I told her about the tube so she was able to contact the GI clinic about getting it looked at. I needed to go through Speech and the doctor that did his swallow study before I got the okay that I was doing things correctly. As a result they agreed to remove the G/J-tube and replace it with a G-tube button like he had for about a week in his second visit in the hospital. It will be such a relief to do away with the G/J tube. It's awkward and has caused us more issues. I think it's slowed his progression towards full oral feeds.
With the nurses visit I was relieved to find I did something right in his feeds because he gained 8 oz. Now he weighs 9lbs 14oz and 21 inches. I've tried to be very careful in measuring the amount of food he gets as well as trying to increase his amounts in oral feeds. The one thing I'm finding is that my freezer is nearly bare of milk. I'm not sure I feel ready giving him just formula, but I think I will be able to continue nursing and just formula as the supplement.
So after all that we still had more issues last night. Around 2:30am I woke to his feeding pump alarm telling me his food was empty. When I went to take it off everything around it was wet. The gastric port now is leaking. What a headache. At about 6am I tried reconnecting his feeding and I couldn't get a tight connection. Even with tape and a clamp it leaked and left me doing another load of laundry. Because of the leak Baby GL didn't get his full amount of feeds for the night and I'm not sure what to do to get through tonight. My husband and I discussed a trial run with overnight oral feeds. We may be forced to try it tonight.
To try and combat this I decided to try feeding him into the gastric part of the tube Friday night. It would be just as he had all his time in the hospital, everything going to his stomach, just in smaller amounts over a longer period of time. It was a very successful weekend doing the feeds this way. He went three nights without any major issues. He still deals with the gas and I think he gets full towards the morning without having a break in the feedings, but otherwise I feel he felt better.
One thing we started noticing more of was a leak in the tube which was a whole another issue. I've noticed in the past that the jejunum port doesn't have a really tight seal so I would find yellow stains on Baby GL's clothing. Especially over the weekend, with not using it, I noticed it even more. It's disturbing because you wonder what is it that is coming through the tube. With his gastric feeds I did notice a little milk coming through the jejunum, but still with a yellow substance, too. I ended up taping the port closed to prevent the leaks which could only be a temporary fix.
The nurse came on Monday as she does weekly. I told her about the tube so she was able to contact the GI clinic about getting it looked at. I needed to go through Speech and the doctor that did his swallow study before I got the okay that I was doing things correctly. As a result they agreed to remove the G/J-tube and replace it with a G-tube button like he had for about a week in his second visit in the hospital. It will be such a relief to do away with the G/J tube. It's awkward and has caused us more issues. I think it's slowed his progression towards full oral feeds.
With the nurses visit I was relieved to find I did something right in his feeds because he gained 8 oz. Now he weighs 9lbs 14oz and 21 inches. I've tried to be very careful in measuring the amount of food he gets as well as trying to increase his amounts in oral feeds. The one thing I'm finding is that my freezer is nearly bare of milk. I'm not sure I feel ready giving him just formula, but I think I will be able to continue nursing and just formula as the supplement.
So after all that we still had more issues last night. Around 2:30am I woke to his feeding pump alarm telling me his food was empty. When I went to take it off everything around it was wet. The gastric port now is leaking. What a headache. At about 6am I tried reconnecting his feeding and I couldn't get a tight connection. Even with tape and a clamp it leaked and left me doing another load of laundry. Because of the leak Baby GL didn't get his full amount of feeds for the night and I'm not sure what to do to get through tonight. My husband and I discussed a trial run with overnight oral feeds. We may be forced to try it tonight.
Well, after all that, Baby GL had his first Halloween. We didn't go trick-or-treating, but we did dress up. I was so excited to find a giraffe headband so he wore that a few times last. Saturday, while sitting with his uncle he had his Trick -o- Treat tee. My sister and I escaped to a haunted house for a night out without kids. My sister and nephew dressed up to trick-or-treat on Sunday. They went as mama and baby bumble bees. Baby GL wore the pumpkin his cousin wore his first Halloween. I wasn't sure it would fit because it's a newborn size. He's almost 8 months and not quite 10lbs, but we are almost to the next set of clothing.
So now we are looking forward to tomorrow. I worry a little if we're making the right decision switching him. Last night with a bottle Baby GL started coughing and his whole bottle came up on me. That's when it's scary because it's on the way up you worry about aspirating. He seems to be fine but our nurse will be coming to check him out today just to make sure his lungs are clear.
Aside from all our drama, my husband and I commented on Baby GL's voice. In the NICU we worried if his vocals would recover from his repeated intubations. Well, we have be reassured of his recovery, loud and even louder. He loves talking. He gets louder everyday and his vocalizations are changing. It's incredible to witness those changes.
So now we are looking forward to tomorrow. I worry a little if we're making the right decision switching him. Last night with a bottle Baby GL started coughing and his whole bottle came up on me. That's when it's scary because it's on the way up you worry about aspirating. He seems to be fine but our nurse will be coming to check him out today just to make sure his lungs are clear.
Aside from all our drama, my husband and I commented on Baby GL's voice. In the NICU we worried if his vocals would recover from his repeated intubations. Well, we have be reassured of his recovery, loud and even louder. He loves talking. He gets louder everyday and his vocalizations are changing. It's incredible to witness those changes.
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