Evangeline- 7lbs 15oz
Audrey- 12lbs 141/2oz
Tuesday, September 25, 2012
Wednesday, September 19, 2012
oral aversion
I am so thankful to finally be getting some help and intervention for Evangeline.
The poo hit the fan around their 4 month mark as the girls were each getting stronger, & more opinionated against feeds. I was spending at least an hour battling each girl to eat 5+ times a day and losing my mind. E was barely growing, maybe an ounceish every 10 days and I felt she needed immediate intervention.... something had to change. All three of us needed help, so we decided that the best option for us was for me and the girls to go back to my home to get second opinions, and help from my family (and my dad who is medically connected) so that I could catch my breath and we could put a plan together for the girls.
We went to Childrens Hospital to get a second opinion from a team of feeding therapists. After observing her, they agreed that it was most likely an oral aversion, a psychological/relational issue- perfect.
We also got a second opinion from a GI specialist, who after listening well about her history and EVERYTHING I had already tried, agreed that it was not a medical/physical issue. She wanted to do a swallow study, take some x-rays, and do some blood work just to be sure we were not missing anything and everything came back normal.
Come to find out, long term NICU babies are at risk for oral aversion because of the oral trauma they experience immediately after birth and throughout their stay. Evangeline had continuous negative oral experiences in the NI. She was intubated for 6 days after birth and then again for 1 day with her infection. Her infection presented as a huge swollen gland on her chin that drained through her mouth. Additionally, she had a feeding tube in her mouth for most of her stay. I have exacerbated the issue by force feeding her because I am desperate for her to grow and thrive. I hated this but felt I had no other choice. Here is a chapter on oral aversion.
SOOO... we will be staying in STL a few weeks because we have a great treatment team here. We will be doing intensive feeding therapy several times a week and may have to give E an NG tube if things don't pick up quickly because she cannot afford to lose or not gain...
Audrey is also having the same feeding issues, she is just not as critical so she is less of my focus. I am hoping that I can use the help we receive in therapy to treat Audrey as well....If need be, I'll have to start therapy with her too...
The girls reached the dreaded 5lb difference. I don't know why this number is so agonizing to me. Each pound feels like defeat, like TTTS is still winning. ugh.
Jesus help us! Im so tired of it being hard, but thankful to finally be getting the help I have been wanting for months!
...I hope this post can be helpful to my other TTTS/preemie mom readers who can't figure out why their babies won't eat!! Stop force feeding before its too late.. :\
The poo hit the fan around their 4 month mark as the girls were each getting stronger, & more opinionated against feeds. I was spending at least an hour battling each girl to eat 5+ times a day and losing my mind. E was barely growing, maybe an ounceish every 10 days and I felt she needed immediate intervention.... something had to change. All three of us needed help, so we decided that the best option for us was for me and the girls to go back to my home to get second opinions, and help from my family (and my dad who is medically connected) so that I could catch my breath and we could put a plan together for the girls.
We went to Childrens Hospital to get a second opinion from a team of feeding therapists. After observing her, they agreed that it was most likely an oral aversion, a psychological/relational issue- perfect.
We also got a second opinion from a GI specialist, who after listening well about her history and EVERYTHING I had already tried, agreed that it was not a medical/physical issue. She wanted to do a swallow study, take some x-rays, and do some blood work just to be sure we were not missing anything and everything came back normal.
Come to find out, long term NICU babies are at risk for oral aversion because of the oral trauma they experience immediately after birth and throughout their stay. Evangeline had continuous negative oral experiences in the NI. She was intubated for 6 days after birth and then again for 1 day with her infection. Her infection presented as a huge swollen gland on her chin that drained through her mouth. Additionally, she had a feeding tube in her mouth for most of her stay. I have exacerbated the issue by force feeding her because I am desperate for her to grow and thrive. I hated this but felt I had no other choice. Here is a chapter on oral aversion.
SOOO... we will be staying in STL a few weeks because we have a great treatment team here. We will be doing intensive feeding therapy several times a week and may have to give E an NG tube if things don't pick up quickly because she cannot afford to lose or not gain...
Audrey is also having the same feeding issues, she is just not as critical so she is less of my focus. I am hoping that I can use the help we receive in therapy to treat Audrey as well....If need be, I'll have to start therapy with her too...
The girls reached the dreaded 5lb difference. I don't know why this number is so agonizing to me. Each pound feels like defeat, like TTTS is still winning. ugh.
Jesus help us! Im so tired of it being hard, but thankful to finally be getting the help I have been wanting for months!
...I hope this post can be helpful to my other TTTS/preemie mom readers who can't figure out why their babies won't eat!! Stop force feeding before its too late.. :\
Tuesday, August 28, 2012
Friday, August 10, 2012
more prayer for Evangeline..
Evangeline is really struggling to eat and grow. She is 6lb 5oz and 31/2 months old. If she continues at this rate, she will be so developmentally behind. She struggles through almost every feed. We have been trying to figure if the problem is neurological, mechanical, GI related, reflux, taste preference, over stimulation, nipple type, personality, etc. We are constantly troubleshooting and trying new things to help her to thrive, only to be disappointed over and over. Additionally, we are having to start partial formula because my supply cannot sustain them both at this point- and she HATES formula (I have tried several types); screams, kicks, and throws it up. I have had all kinds of people out to evaluate her, and at this point no one really can identify anything definitively. Some say that it is just her body after all she's been through, and there is nothing we can do. Others say that there is a missing link in her care, and if we figure out exactly what her body is needing, then she will take off. At this point, she is cognitively and socially on target, which we are so thankful for! Please pray for wisdom for me to know how to care for this tiny girl, and that she would just freakin eat and grow!
Audrey continues to coast through life like it ain't no thang.
You can imagine how I'm doing after the past 7 months, pray for me.
If you have had experience with this, or have any thoughts, please let me know! I am seriously desperate enough that if you told me to bop her on the head 3 times with a wand before every feed, I would probably do it. Thank you thank you!! I'll keep you posted on her.
Audrey continues to coast through life like it ain't no thang.
You can imagine how I'm doing after the past 7 months, pray for me.
If you have had experience with this, or have any thoughts, please let me know! I am seriously desperate enough that if you told me to bop her on the head 3 times with a wand before every feed, I would probably do it. Thank you thank you!! I'll keep you posted on her.
Saturday, July 28, 2012
Tuesday, June 26, 2012
Thursday, June 21, 2012
home
We looove having everyone under one roof. It definitely makes life simpler, and home is just a lot less stressful than the NICU. It is so much fun to have them together again. I think they are happier being together. They like to scootch closer and closer during nap time.
E is doing so much better at home than she was at the hospital, she is eating and sleeping better- I think she missed her sissy- Im so glad! I'm so happy and thankful! I just want to eat these little girls! I honestly can't believe we made it.
It is crazy hard too (good hard :)). We are SO tired. It is impossible at this point to tandem feed at all because Evangeline requires so much attention to eat. We have to have 2 people for every feed, so if we want to sleep more than in 2 hour chunks or if Ryan wants to work at all, we must have 3 people at all times. We are so thankful that Ryan's mom is here to help for now, but are freaking out about how to do this alone!! Twin moms, please leave any helpful hints for us in terms of feeding one strong and one weaker feeder tandem. Also, we are considering hiring full time help, so if you know of any nanny/nurses in the DFW area, please let us know- thank you for your help!
E is doing so much better at home than she was at the hospital, she is eating and sleeping better- I think she missed her sissy- Im so glad! I'm so happy and thankful! I just want to eat these little girls! I honestly can't believe we made it.
It is crazy hard too (good hard :)). We are SO tired. It is impossible at this point to tandem feed at all because Evangeline requires so much attention to eat. We have to have 2 people for every feed, so if we want to sleep more than in 2 hour chunks or if Ryan wants to work at all, we must have 3 people at all times. We are so thankful that Ryan's mom is here to help for now, but are freaking out about how to do this alone!! Twin moms, please leave any helpful hints for us in terms of feeding one strong and one weaker feeder tandem. Also, we are considering hiring full time help, so if you know of any nanny/nurses in the DFW area, please let us know- thank you for your help!
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