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.. :\
Thanks! We are still praying for your sweet family!
ReplyDeleteSO glad to hear that E is getting good treatment! What can you do to help the psychological issues? I really hope things progress quickly for you!! The girls are just as cute as can be!
ReplyDeleteAudrey facial expression looks a lot like Adam in this picture
ReplyDeleteLook at those beautiful sweet girls! So glad they are here after all they went through. I'm glad they have a mamma who will fight for them and take such good care of them. Hang in there. We are praying for y'all.
ReplyDeletePlease let me know if I could do anything for you while you are in STL. I would love to do even the most horrible or mundane of things.
ReplyDeleteHi Laura, I am sorry to hear about the struggles you are having with the girl's feedings. They are beautiful babies and you are such a wonderful Mommie!!! I want you to know that you are doing an amazing job dealing with everything and I admire you for your tenacity! Hope to see you in Franklin soon! I have placed you back in our prayer room at Mercy Ministries. Becky
ReplyDeleteLaura dear, Please let me know if there is anything I can do besides pray... I know you are getting the love and support of your family and it feels good, doesn't it? It's a blessing. Soak their love and comfort up. Let me know if there is anything at all that I can do while you are here in STL. xo
ReplyDeleteLaura,
ReplyDeleteYou don't know me, but my husband, Chris, grew up in Cottonwood with your husband, and I've heard about your sweet girls from a friend of mine (the Eskews). Anyhow, I have 3 year old twins that also suffered from TTTS. They were born at 29 weeks at 1.14oz and 3lbs. I know what you face and deal with every single day with those sweet girls in terms of feeding issues. Looking back, I know I completely force-fed my little Adam for the first 2 years of his life. I was obsessed with helping him gain weight. At one year old, he was 13 pounds. He did consistently gain, he just didn't "catch up" to his peers as his brother did. It was hard, too, because I couldn't help but compare them to each other. He is still littler than his peers.... he & his brother are about 6 pounds apart now (they've been that way for the past 2 years or so)... but he is WONDERFUL!! healthy. funny. brave. agile. so smart. really, an amazing child.
I think it's great that you're getting help with the feeding. I never did that. It probably would have made things better earlier for all of us.... anyhow, I'd love to keep in touch or be able to help in any way. Please email me! I'd love to send you a picture of my happy, healthy 3 year olds!!! Hang in there, Brooke Coyle
brookecoyle@yahoo.com