Our appointments went well today. I wasn't told a lot that I didn't already know since we've been thinking, planning, and researching for a while now, but it was still beneficial to meet with both the surgeon (who we met when Jonah was in the NICU) and the anesthesiologist.
After hearing how well he's eating, the surgeon said that, due to potential complications with any g-tube and especially having extra risks with an EB child, he would wait. Matt agrees. I'm still on the fence, but it's something I certainly don't want to do until Matt and I BOTH feel like it's time. Jonah is eating great these last few days, and we want to give it time to make sure he's not trying to turn things around on his own. If only he would eat when awake... I would feel completely different about things. For now it seems that he only eats under "optimal" conditions (sleepy but not overly tired, no distraction, mom or dad doing the feeding etc). I guess this Thanksgiving trip away from home will be a good test to see how he does out of his normal routine.
Although there are things about the g-tube that sound heavenly (having a way to give meds, not worrying about being home every time he's ready to sleep, having a back-up for when his mouth hurts, not stressing if he won't eat), there are still the risks of infection, the tube leaking, breakdown around the site, and, of course, the risk of intubation. It's a lot to weigh, and makes the decision very difficult. Just when I think we've reached that moment where we HAVE to decide, Jonah decides to start eating again. And I'm not saying this is a fluke, but I'm under no false impression that we're home free. I know my Jonah. He likes to shake things up. Just when you think it's so bad you're going to have to take drastic measures, he starts doing better. And just when you think you've had a breakthrough and things are going great, it'll all start going downhill again.
So... again... it's wait and see.
But, who knows, maybe this is the miracle we've been praying for. Who am I to put God in a box?
Speaking of not putting God in any boxes, guess who's already eaten 21 ounces today, you know, before 2 pm?
Monday, November 23, 2009
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36 comments:
Our family is standing with you in prayer! Our God is mighty, indeed! And he always meets us in our darkest times, as our family has recently experienced. The joy of the Lord truly is our strength (he is our ONLY source of strength). Much Love, Allyson (for The Reed Family) :)
YAY Jonah!
Patrice, do what you feel is right for Jonah. You are his mother and you know him best =)
My son, Caleb, is almost 7 months and he refuses to drink formula after starting solids. He just hates the taste of it. We can only get him to drink while he is sleeping too!! So maybe, just maybe, that is not an EB thing. His Pediatrician blames him not wanting to drink on teething, but I swear he just hates the taste. We fight him to get him to drink a few sips.. it's awful and I dread feeding time. I'd say he drinks about 20 oz on a good day. Just wanted you to know you are not the only Mom going through that. =)
Keep your head up, you have a beautiful baby boy. I always look forward to reading your updates each morning and looking at Jonah's beautiful photos, he seems like such a happy guy.
I agree. You and Matt will be 100% on the same page when it is time for the G-tube. Praise God for the amount he's already eaten today! He's a show off for sure :) Both God and Jonah!
Oh, isn't that just like a baby? Drive you to the point of madness and then change it up on you. Thanking the Lord for good eating in hopes to avoid a g-tube for as long as possible.
I just pray for you guys every day. I feel driven to do it. Every time I look at my own son and I think of all you and your family have to endure...well, it puts so much into perspective for me. 7 years ago I got my miracle with my daughter. I pray for your miracle, too.
So glad he is eating well today!
Yahoooooo! So glad to hear Jonah is doing so well. We cannot WAIT to see all of you and hug the stew out of you later this week. Bought my ornaments, and we're READY.
Will continue to pray that Jonah will continue to eat & even get to the point that he will eat when awake. This could very easily be one of the miracles God is blessing Jonah (you & Matt) also.
Enjoy your Thanksgiving with family--as you said this will be a test to see how good Jonah does out of his "normal".
Happy 9th month B'day Jonut a few days early since you will be traveling on Friday--maybe when you get back home you can do the post & let us know how much everyone enjoyed your weekend-- and lots of pictures a a handsome boy (if you know who I am talking about).
Love, prayers & wishes for a blessed Thanksgiving & safe traveling.
Woot woot, Jonah! Keep up that eatin', kiddo! :)
I can't imagine the day-to-day of you all's life down there... now that he has likely hit the "I'm 8 months old and just too distracted to eat" phase (our third, a daughter, has to nurse in the dark, in her room, with the door shut... and half asleep... before she'll take anything!) and you can't just deal with it in isolation because of his high nutrition needs... again, I just can't imagine. Please know we're all praying for you daily!
The Starrs in Colorado
What a roller coaster ride! I can totally understand both points of view. Both of my kids have been VERY low weight, for no good reason and I understand to a certain extent the obsession over every bit of food that goes into their mouths, how many poopy and wet diapers they have, where they fall on the growth curve, etc. It's so stressful and makes it hard to enjoy the little moments with them when you always have a nagging fear in the back of your mind.
Your situation is like mine on steroids, so I can only understand just a tiny little bit. We'll just continue to pray that this is the turning point for him when it comes to eating. I know you keep a very careful eye on him so you'll do what's best for him in the long run!
~Amy
YAAAY! Go Jonah!!
You go, Mr. 21-ouncer! I'm very happy for you!
Glad the appointments went well today - I prayed specifically for that this morning. I'll continue to pray for wisdom for you and Matt to make the right decision in the right timing.
Love from TX!
Laura
hope and pray little j~man continues to eat like a big boy...lots of ounces ok jonut!? much love and blessings from ga~erin
21 Ozs before 2:00 AND with a morning doctor appointment? Sounds like another good day for our boy! That's the way to show your mom, Jonah!!!
Whoo Hoo Jonah! Keep it up kiddo!
Praise the Lord!
21 Ounces! Go, Jonah, go!
Praying for you, Matt, and of course, Jonut!
So glad to hear that things went well for you all today....even if it left you "on the fence". Still praying for all of you. Hoping this is your miracle. Blessing to you...and have a wonderful thanksgiving...sounds like Jonah has given you something else to be thankful for this year!
Still praying for all of the decisions you'll face eventually, but happy to hear that Jonah seems to be doing better! Our little non-eater does the same tricks Jonah does -- just when we think we have to take drastic measures, he begins eating again. It's frustrating, isn't it? Like the car that doesn't make that noise in front of the mechanic, only when YOU drive it. Those little boys -- they know just when to pull out all the stops, don't they?
i lOVE that pic of Jonah in your side bar--drinking a bottle.. not crying.. yeah and praise God!!
Praise God that Jonah is eating so well. I will keep praying for his healing and for you. You are walking a hard road.
random thought but have you tried maybe crushing up flintstones for his vitamins, that poly visol taste terrible my daughter hated it, maybe he would eat it crushed up off of a spoon or if you could get it crushed up enough disolve in his milk. Glad things are turning around I hope they continue to head in the right direction. Have a great Turkey Day!!
You are a wonderful Mother and you will know when the time is right. Thank you for sharing baby Jonah with us.
Tina
I'm so happy Jonah was eating so well...I think of you both so often through out the day! Praying for peace about your decision!!!!
Just wishing you a Happy Thanksgiving and safe travels.
Eat Jonah! Eat!
So glad the appointment went well and that Jonah is once again defying odds!
Prayers that he continues to do it and that g-tube is only a once-thought-of idea.
21 ounces before 2??? Way to go Jonah!!!!
21 ounces before 2pm!!! Way to go Jonah!!
Praying for that beautiful boy. I have a baby about the same age. Ezra.
Hugs, Sharon
P.S.
My Ezra prefers his baby food COLD. I'm sure you've tried everything...but, thought I'd put that out there. I keep thinking about Jonah every time I feed Ezra his chilled baby food.
Oh bless his heart ! It's like this boy knows what's going on. LOL He say's okay Mom I'll show you how to eat ! Go Jonah ! ! !
As always, I can't imagine having to make such decisions for my beloved child. I'm sure your mind is constantly weighing it. You are a such a fantastic mother. I'm sure some days it's hard to accept that, but we are all in awe of the things you must face with Jonah. Your love for him is boundless. Thinking of you!
--Kelley in GA
I'm impressed Jonah..very nicely done! I can't imagine the stress of the back and forth..my son was famous for doing that with needing tubes put in his ears. We'd think he was doing better, then next thing he had another infection. I know this doesn't compare to your situation but maybe a small glimpse of relation.
May God be the glory!
Way to go, Jonah, but I'm gonna keep praying that God keeps helping you make life a little easier for your mama. She loves you bunches and bunches and does a whole lot for you happily, but she needs a break every now and then, okay? Good job, Jonah. Glad to hear you're listening to me. Have a wonderful Thanksgiving with your family!
Way to go Jonah! :)
Praise God. Jonah is a blessing to us all and he will be blessed.
i just wanted to jump in with some of the others and say that the only eating when sleepy, no distractions may not be an EB thing or an "i don't like the taste of formula" thing. My baby, Georgia (7.5 months), is breastfed and all the stars have to be aligned just right for her to nurse. Most of the time i have to take her to the bedroom and lie down with her to get her to eat. I don't know the volume she is taking in the evening and overnight, but during the day when she is taking bottles of expressed milk when i am at work, she rarely takes more than 6 oz. in 10 hours. I think babies this age are just really distractable. Your family continues to be in my prayers. Congratulations on your recent success in getting sweet jonah to eat more. God is Good.
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