Have you ever heard of a little baby that's been put on a diet? A little baby that's only almost 4 months old? I just think my baby Katea might be the first one! Hahaha
On Saturday, she got her feeding tube taken out....and the plan was to let her eat as much as she wanted, until she was full....and then to let her sleep as long as she wanted. She's old enough now to make her own schedule....the only stipulation was that she had to meet a minimum of 220mls in a 12 hour period. She had no problems at all eating.....and in fact, she shocked everyone at how quickly she picked up on it and how she just took right off. She actually ended up eating close to 400mls....WAY over her minimum. The Dr's, NNP's and nurses said they have never seen a 25 weeker pick up so quickly on feeding....she is amazing! She was eating like 100mls or 110mls at once, and then she'd sleep for like 4-5 hours.
When I got to the hospital on Sunday, Stacey was her nurse. She came and gave me the updates of how baby had done so far that day. She told me that they noticed her oxygen saturations were all over the place and she would yo-yo a lot while she was sleeping. She self-resolved all of them, but yo-yo'ing was not good for her lungs or her eyes....and after analyzing the few hours she was sleeping after eating the 110mls, she would de-sat and recover about 30% of the time. That was a lot! Stacey decided to try a little experiment on her and the next time she woke up, she limited her feeding to only 80mls. Baby Katea still got full off the 80mls and she still slept really well....and there was a significant improvement on her oxygen saturations. She went from yo-yo'ing 30% of the time to only 18%, and she didn't reflux as much. Because of those findings, the NNP changed her orders to say that she is not allowed to eat more than 80mls in one sitting. Her problem was that she just kept eating...even after she was full....and that made her little stomach so full that her lungs didn't quite have enough room to expand fully, and it was eaiser for the food to come back up. They took the minimum of 220mls a shift and changed it to a maximum of 240mls a shift. Hahaha what a little fatso.
Limiting her to 80mls seemed to be helping quite a bit, and she's still been gaining a lot of weight and growing a lot in length. Yesterday she weighed 3490 grams, which is 7lbs. 11oz. and she's now 20 1/2 inches long. Because she's growing so well, they changed the formula for her feedings again. They were able to take away a lot of the additives. She's not getting the benaprotein anymore...they stopped the microlipids and changed it to Similac Special Care concentrate and they're only fortifying her milk to 24 calories again instead of 27. Those are HUGE steps in the right direction and we're so happy!
She can eat the whole time without coughing or gagging, she's got the suck, swallow breathe thing down really well. But after a couple minutes of letting the food sit in her stomach, she always refluxes and coughs and gags....which sometimes is so bad that she holds her breath and de-sats and brady's. She bubbles at the mouth a lot. Reflux sucks! The Neo, NNP, nurse, dietician, developmental specialist, RT and me all met in her little room yesterday. We were trying to come up with a solution to her reflux. Before, they would thicken the milk with a powder called SimplyThick.....it worked perfectly because it was still easy to swallow, and when it got to your stomach it stayed thick so that it wouldn't get refluxed back up. The only problem with that is that SimplyThick got recalled due to a bacteria found in it. It was recently recalled, so they were still trying to figure out what the next best thing would be. They called Primary Children's and LDS and Utah Valley hospitals to see what they were using....it seemed that they all were having the same problems. There were several options to use, but they only worked in formula....everything they talked about would have only stayed thick for about 30 minutes in breastmilk...and that would have totally defeated the purpose of staying thick and weighing down the milk in her stomach. The two things they came down to were rice cereal or bananas. The rice cereal was ruled out because in order to keep it thick on breastmilk, you would have to add way too much. Bananas were the best option...the only downfall to that was introducing food too early could cause food allergies. But, it really was our only option. The NNP wrote the order for the bananas (which is just 3mls of Gerber Banana baby food to 10mls of breastmilk) and also ordered a swallow study just to make sure she's not silently aspirating her food.
The swallow study was today.....to be honest, I was really nervous for this test. The results, if she was aspirating, would have meant huge steps backwards....they would have had to stop feeding her through her mouth again, and re-do the NJ tube. I was trying to think positively.....hoping and praying that she was NOT silently aspirating. Baby Katea had a whole entourage of people going with her to the test. Jen the developmental specialist, another developmental specialist from LDS hospital, Ashlee the NNP, Bear the RT.....and me. When we went to the Upper GI, it was just Jen and me....so having this many people go this time made me really nervous. The swallow study consisited of two different tests. The first one was just the milk she's been drinking.....and the second one was with the bananas added. They did have to add some berium(the dye), but because of how bad she reacted to it last time, they used a very minimal amount. They fed her as she laid under an x-ray machine and they watched how she sucked and swallowed....and watched to see if it was going down the right tube into her stomach, or if she was getting some in her lungs. Thankfully, she WAS NOT aspirating.....and actually they said she had a perfect sucking and swallowing pattern. Whew! What a relief! That meant we get to keep moving forward.....and it means closer to home! Yay! All we're really waiting for now is for her eyes to develop, and her oxygen to go down a little more. Wow, we're so close! There is a light at the end of this NICU tunnel, and I can actually see it. What a ride....what a rollercoaster....what a learning experience.....we are blessed!
On Saturday, she got her feeding tube taken out....and the plan was to let her eat as much as she wanted, until she was full....and then to let her sleep as long as she wanted. She's old enough now to make her own schedule....the only stipulation was that she had to meet a minimum of 220mls in a 12 hour period. She had no problems at all eating.....and in fact, she shocked everyone at how quickly she picked up on it and how she just took right off. She actually ended up eating close to 400mls....WAY over her minimum. The Dr's, NNP's and nurses said they have never seen a 25 weeker pick up so quickly on feeding....she is amazing! She was eating like 100mls or 110mls at once, and then she'd sleep for like 4-5 hours.
When I got to the hospital on Sunday, Stacey was her nurse. She came and gave me the updates of how baby had done so far that day. She told me that they noticed her oxygen saturations were all over the place and she would yo-yo a lot while she was sleeping. She self-resolved all of them, but yo-yo'ing was not good for her lungs or her eyes....and after analyzing the few hours she was sleeping after eating the 110mls, she would de-sat and recover about 30% of the time. That was a lot! Stacey decided to try a little experiment on her and the next time she woke up, she limited her feeding to only 80mls. Baby Katea still got full off the 80mls and she still slept really well....and there was a significant improvement on her oxygen saturations. She went from yo-yo'ing 30% of the time to only 18%, and she didn't reflux as much. Because of those findings, the NNP changed her orders to say that she is not allowed to eat more than 80mls in one sitting. Her problem was that she just kept eating...even after she was full....and that made her little stomach so full that her lungs didn't quite have enough room to expand fully, and it was eaiser for the food to come back up. They took the minimum of 220mls a shift and changed it to a maximum of 240mls a shift. Hahaha what a little fatso.
Who's an over-eater??........................I am! I am! Haha
She can eat the whole time without coughing or gagging, she's got the suck, swallow breathe thing down really well. But after a couple minutes of letting the food sit in her stomach, she always refluxes and coughs and gags....which sometimes is so bad that she holds her breath and de-sats and brady's. She bubbles at the mouth a lot. Reflux sucks! The Neo, NNP, nurse, dietician, developmental specialist, RT and me all met in her little room yesterday. We were trying to come up with a solution to her reflux. Before, they would thicken the milk with a powder called SimplyThick.....it worked perfectly because it was still easy to swallow, and when it got to your stomach it stayed thick so that it wouldn't get refluxed back up. The only problem with that is that SimplyThick got recalled due to a bacteria found in it. It was recently recalled, so they were still trying to figure out what the next best thing would be. They called Primary Children's and LDS and Utah Valley hospitals to see what they were using....it seemed that they all were having the same problems. There were several options to use, but they only worked in formula....everything they talked about would have only stayed thick for about 30 minutes in breastmilk...and that would have totally defeated the purpose of staying thick and weighing down the milk in her stomach. The two things they came down to were rice cereal or bananas. The rice cereal was ruled out because in order to keep it thick on breastmilk, you would have to add way too much. Bananas were the best option...the only downfall to that was introducing food too early could cause food allergies. But, it really was our only option. The NNP wrote the order for the bananas (which is just 3mls of Gerber Banana baby food to 10mls of breastmilk) and also ordered a swallow study just to make sure she's not silently aspirating her food.
The swallow study was today.....to be honest, I was really nervous for this test. The results, if she was aspirating, would have meant huge steps backwards....they would have had to stop feeding her through her mouth again, and re-do the NJ tube. I was trying to think positively.....hoping and praying that she was NOT silently aspirating. Baby Katea had a whole entourage of people going with her to the test. Jen the developmental specialist, another developmental specialist from LDS hospital, Ashlee the NNP, Bear the RT.....and me. When we went to the Upper GI, it was just Jen and me....so having this many people go this time made me really nervous. The swallow study consisited of two different tests. The first one was just the milk she's been drinking.....and the second one was with the bananas added. They did have to add some berium(the dye), but because of how bad she reacted to it last time, they used a very minimal amount. They fed her as she laid under an x-ray machine and they watched how she sucked and swallowed....and watched to see if it was going down the right tube into her stomach, or if she was getting some in her lungs. Thankfully, she WAS NOT aspirating.....and actually they said she had a perfect sucking and swallowing pattern. Whew! What a relief! That meant we get to keep moving forward.....and it means closer to home! Yay! All we're really waiting for now is for her eyes to develop, and her oxygen to go down a little more. Wow, we're so close! There is a light at the end of this NICU tunnel, and I can actually see it. What a ride....what a rollercoaster....what a learning experience.....we are blessed!
Pushing Baby Katea in her crib to Radiology
Jen mixing the berium & bananas w/ my breastmilk
Getting all set up for her swallow study
She looks so tiny on the big bed under the big x-ray machine
I had to watch behind the wall through the window
2 comments:
I laughed out loud at your "Who's an over-eater" caption. Love it! So glad she's doing so well!!
She is too cute! Chubby babies are the BEST! :) Glad she's eating well, and gaining weight! For babies that's always a good thing. ;) Keeping her in our prayers and hoping she'll be home with your beautiful little family soon! :)
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