We went to visit Dr. Downing today at Providence Pediatrics for our usual weight check. Caroline has not been eating especially well this week or last week. She weighed 6.6 today. It is really emotionally draining and exhausting to feed this little baby around the clock and see virtually no progress. Mimi has been working very hard at feeding Caroline in the nighttime while I sleep. I am getting a lot more sleep this past week. Cam leaves tonight and will be gone 7 days. Mom and Dad will leave Sunday.
Dr. Downing has decided the best thing for Caroline and all of us that feed her that she will be getting a feeding tube the week of Oct. 9th. This will allow me to not feed her every two hours and will allow Caroline a means for growth and nutrition. I am glad we are finally getting down to some real answers and action. The feeding tube will not be fun, but in the end better for us all.
It does not have to be inserted surgically, but we will need to be in the hospital 4-5 days for a suck/ swallow study, gastric emptying study, and several consults with all the major specialists involved. In a round about way this is an answer to prayer. I previously have been arranging for these things on my own and we will have a speech therapist, gastrointestinologist, geneticist, and endocrinologist all available and all watching Caroline that week. This is better than waiting until November. I will learn how to feed Caroline and care for the feeding tube while we are there in the hospital. We will arrange for the moms to help out with Carley and Cam will have to use some vacation time to stay with us if he can. This will be a long journey and I am trusting God for the future that He holds and that He has for our family. Thank you so much for your continued prayer. we will be admitted to the CMC hospital uptown in Charlotte around 10 am on Oct9. Carley and Caroline will receive flu vaccines on Oct 2 during Caroline's regular scheduled weight check.
4 comments:
Cam & Kim,
I know none of this is what you would plan or desire as far as activities with your 2-month-old are concerned. But I am encouraged that you will have the chance to work closely with specialists in a setting where perhaps some helpful conclusions will be reached.
Continuing to pray along with you,
Jenn
Sister,
I wish I could take off that week of work to come help...
I know this will eventually take some pressure off of all of you to keep feeding so much. She will only eat what she wants, so you can't force it. She looks so happy in her pictures, and I can't wait to see her again soon!
REALLY happy to have you for Thanksgiving....I can't tell you how excited I am!!! :)
Those are absolutely the most precious pictures I have ever seen. I could just hug and squeeze her (gently). She is so alert and I love her bright eyes and her smile. Just remember that she will never remember having a feeding tube - it will hurt you far more than it will her. As adults we have seen and know much more about tubes and needles, etc. As a little baby, she will probably think that is part of the way things are supposed to be. She hasn't had time to develop negative thoughts about tubes and such. The feeding tube can actually be a godsend for all. Try to look at the good it will be doing and don't focus on how she might look with a tube in. Weight gain is the goal and the tube should help with that. It was so good to see Cam this weekend - he filled us in on the whole family. Ya'll are doing a great job and I think having Caroline in the hospital when all the doctors will come to her instead of ya'll having to take road trips all over town will absolutely be the best thing. Maybe this way, you can get a consensus opinion from the doctors by having them come to her. Pete and I think of you every day and I keep you in my prayers. Remember you are doing a great job and everything will turn out as God planned it. She sure is a cutie !
Love,
Peggy
Kim & Cameron:
You continue to be in my thoughts and daily prayers. We've been out of town so I hadn't read last Friday's update until tonight. I'll be praying for you as Cameron's out of town and you [Kim]are coping with feeding tubes, etc.
Love you dearly,
Cathy, Mark, John-Mark & Dylan
p.s. ~ LOVE THE PHOTOS!!!
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