Saturday, February 13, 2010
Thursday, February 11, 2010
Here we go....
...so my idea of having Bree take all of her volume of food she needs in the day time hours is not working so well. She can't seem to handle the volume of food, and if we go over 200 cc's a feed, it all comes back up. She needs 240 cc's a feed 4 times a day in order for her to get her reccomended amount of calories for the day. We've tried breaking it down into more feeds a day, but for us as parents, it's not feasible. It takes an hour to feed her and then she gets down from her seat for an hour only to go back into it if she gets fed every two hours. That doesn't leave time for naps, doctor visits, therapies, anything. She doesn't even really get too much time to play like a normal kid would do. And without that normal play time she falls farther behind developmentally than she already is.
Sooooo....after talk between me, Adam and my best friend Anneke, we decided to order an Angelcare monitor. Anneke has one for each of her kiddos and she swears by them. They monitor the breathing and movement of the child and if they stop breathing (or moving) for more than 20 seconds, it will alarm and wake you. We decided to go with the deluxe version because it has two pads for monitoring instead of the usual one because Bree is a wiggle worm sleeper. She moves all over her bed, and sleeps in many different positions. This will allow me the peace of mind that I need in order to sleep while giving her a night feed. We hope to be able to give Bree 3 feeds of 200 cc's of formula during the day, and give her a shortened night feed of 280 cc's of formula. I am not sure how that will work out but I'd like to start it around 8 at night and have Adam turn it off around 12 or 12:30 before he comes to bed.
I hope to reduce the amount of time she has with a night feed, but also be continuing to supply her with the nutritional benefits that her body needs. We worked so hard for every little ounce that is on her cute little self, that it pains me to see her throwing up because we are trying to cram so much into her. I think any mother who loves their child is willing to try anything before causing them discomfort and pain.
(On a side note, Bree is an amazing, odd child and is getting all four molars at once. So, that does attribute to some of the throw up and discomfort that she is having. However, if we can help her...we need to.)
Sooooo....after talk between me, Adam and my best friend Anneke, we decided to order an Angelcare monitor. Anneke has one for each of her kiddos and she swears by them. They monitor the breathing and movement of the child and if they stop breathing (or moving) for more than 20 seconds, it will alarm and wake you. We decided to go with the deluxe version because it has two pads for monitoring instead of the usual one because Bree is a wiggle worm sleeper. She moves all over her bed, and sleeps in many different positions. This will allow me the peace of mind that I need in order to sleep while giving her a night feed. We hope to be able to give Bree 3 feeds of 200 cc's of formula during the day, and give her a shortened night feed of 280 cc's of formula. I am not sure how that will work out but I'd like to start it around 8 at night and have Adam turn it off around 12 or 12:30 before he comes to bed.
I hope to reduce the amount of time she has with a night feed, but also be continuing to supply her with the nutritional benefits that her body needs. We worked so hard for every little ounce that is on her cute little self, that it pains me to see her throwing up because we are trying to cram so much into her. I think any mother who loves their child is willing to try anything before causing them discomfort and pain.
(On a side note, Bree is an amazing, odd child and is getting all four molars at once. So, that does attribute to some of the throw up and discomfort that she is having. However, if we can help her...we need to.)
Monday, February 8, 2010
Sunday, February 7, 2010
The end of a ritual
Since having her NG tube placed in February of last year (can you believe we've been tube feeding her for a year now??) Bree has always had a feed of formula that ran overnight. We were told this was to help get in her needed calories and volume of liquids. Also, while sleeping children secrete a hormone that promotes growth, and by feeding her at night we are helping to encourage that. The rate and amount of the night feed has always varied and grown as she has grown. The last night feed she had was running at 38 mls/hr for a total of 380.
Wednesday night found me doing my usual ritual of taking a shower before I go to bed. When I got out of the shower, I heard Bree sounding like she was having a bit of reflux. This sounds like little gasps or little burps. I decided to check on her before I settled into bed. (It's about a 50/50 chance I check on her when she is like this as it is very very common). Am I ever glad I did check on her.
When I got into her room she was laying on her side with her tubing wrapped around her belly. I figured I would "unroll" her and get everything right. As soon as I rolled her onto her back I noticed the tubing wrapped tightly around her neck. I quickly unwrapped it and looked at her. She had a red mark on her neck from the tubing and she was very pale in her face. I picked her up and started rubbing her back vigoriously in order to get the blood circulation going again. After a very long minute or two she started squirming and whining. After another minute she started crying and woke up. She seemed fine so I laid her back down in bed and unhooked her night feed.
It will never be hooked back up again. I do not want to lose Bree simply because the doctors tell me she "needs" a night feed. We have re arranged her feeding schedule, and while it is hard to find time to go anywhere (she always seems to need to eat now), it is well worth the effort. I'd rather have her smiling face here with us than have it pale and dead from being strangled from her feeding tube cord.
The nightime ritual of preparing her feed for the night is ended.
Wednesday night found me doing my usual ritual of taking a shower before I go to bed. When I got out of the shower, I heard Bree sounding like she was having a bit of reflux. This sounds like little gasps or little burps. I decided to check on her before I settled into bed. (It's about a 50/50 chance I check on her when she is like this as it is very very common). Am I ever glad I did check on her.
When I got into her room she was laying on her side with her tubing wrapped around her belly. I figured I would "unroll" her and get everything right. As soon as I rolled her onto her back I noticed the tubing wrapped tightly around her neck. I quickly unwrapped it and looked at her. She had a red mark on her neck from the tubing and she was very pale in her face. I picked her up and started rubbing her back vigoriously in order to get the blood circulation going again. After a very long minute or two she started squirming and whining. After another minute she started crying and woke up. She seemed fine so I laid her back down in bed and unhooked her night feed.
It will never be hooked back up again. I do not want to lose Bree simply because the doctors tell me she "needs" a night feed. We have re arranged her feeding schedule, and while it is hard to find time to go anywhere (she always seems to need to eat now), it is well worth the effort. I'd rather have her smiling face here with us than have it pale and dead from being strangled from her feeding tube cord.
The nightime ritual of preparing her feed for the night is ended.
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