So many of you have expressed your appreciation for this blog, and I'm glad it has been good for you. It has also been SO good for me. It helps me process all of the various ups and downs and arounds of Athan's Journey when I have to sit down and organize it all into sentences and paragraphs that make sense.
But it isn't working today. I can't seem to process all that we heard yesterday into anything that makes sense to me or anyone else. Everyone's diagnosis is a bit different, and the instructions are starting to run into each other in seemingly incompatible ways:
He needs to gain weight, so he needs more calories. So we'll do the fortified bottles. But he won't take as much and he gets more gassy and (therefore) fussy when he has a bottle, so all the extra calories are spent when he doesn't rest well because he's still hungry and fussy because his tummy hurts. So I'll just breastfeed him more often. But not too often, or he'll spit up and loose the calories and meds we just got into him. There's also the issue of making sure he is actually hungry enough to eat well each time, or else he never gets the hind milk that has more calories and fat that he needs.
We need to do meds before he eats to make sure he is hungry and will take all of them in. But taking meds makes him tired, and then he doesn't eat well, which his calorie count can't afford. So we switch meds to after or between meals, and he just lets them dribble out of his mouth and won't swallow. We also have to keep his doses of certain meds spaced out, so some kind of schedule is needed. But when we adjust his eating schedule to up his caloric intake, his med schedule gets blown to bits.
His physical therapist wants him to exercise more, which requires calories that his cardiologist would rather us not spend. He needs to be active to catch up with his head control, but sleep enough for his cognitive processes to remember what his range-of-motion exercises are teaching him.
So take all of those tensions to the doctors' offices, and try to report what you've been doing at home for Athan. The result is that no one is happy. The PT wants more activity, the cardiologist wants more rest. The dietitian says more bottles, the geneticist says more breastfeeding. None of them are talking to each other, and when they talk to us, each one sounds like a reprimand of some kind. That slathers on another layer of internal tension for me - don't ever state or imply that a Mama bear is not doing all she can for her cubs unless you want to get mauled. Ok, maybe not mauled. But it doesn't make for a receptive audience, I can tell you.
So, even 24 hours later, I still have no idea what to do. Apparently, we have to make sure that Athan is awake and sleeping, active and resting, burping, pooping, and eating (from bottle and breast) all at the same time for 28 out of 24 hours a day. If we do all that, plus give Morgan away immediately and never sleep again, then we will be doing all of the "best" things for Athan.
I just needed to rant. Now I can go back to doing the best I know to do today. Thanks for staying with us through all of this!
But it isn't working today. I can't seem to process all that we heard yesterday into anything that makes sense to me or anyone else. Everyone's diagnosis is a bit different, and the instructions are starting to run into each other in seemingly incompatible ways:
He needs to gain weight, so he needs more calories. So we'll do the fortified bottles. But he won't take as much and he gets more gassy and (therefore) fussy when he has a bottle, so all the extra calories are spent when he doesn't rest well because he's still hungry and fussy because his tummy hurts. So I'll just breastfeed him more often. But not too often, or he'll spit up and loose the calories and meds we just got into him. There's also the issue of making sure he is actually hungry enough to eat well each time, or else he never gets the hind milk that has more calories and fat that he needs.
We need to do meds before he eats to make sure he is hungry and will take all of them in. But taking meds makes him tired, and then he doesn't eat well, which his calorie count can't afford. So we switch meds to after or between meals, and he just lets them dribble out of his mouth and won't swallow. We also have to keep his doses of certain meds spaced out, so some kind of schedule is needed. But when we adjust his eating schedule to up his caloric intake, his med schedule gets blown to bits.
His physical therapist wants him to exercise more, which requires calories that his cardiologist would rather us not spend. He needs to be active to catch up with his head control, but sleep enough for his cognitive processes to remember what his range-of-motion exercises are teaching him.
So take all of those tensions to the doctors' offices, and try to report what you've been doing at home for Athan. The result is that no one is happy. The PT wants more activity, the cardiologist wants more rest. The dietitian says more bottles, the geneticist says more breastfeeding. None of them are talking to each other, and when they talk to us, each one sounds like a reprimand of some kind. That slathers on another layer of internal tension for me - don't ever state or imply that a Mama bear is not doing all she can for her cubs unless you want to get mauled. Ok, maybe not mauled. But it doesn't make for a receptive audience, I can tell you.
So, even 24 hours later, I still have no idea what to do. Apparently, we have to make sure that Athan is awake and sleeping, active and resting, burping, pooping, and eating (from bottle and breast) all at the same time for 28 out of 24 hours a day. If we do all that, plus give Morgan away immediately and never sleep again, then we will be doing all of the "best" things for Athan.
I just needed to rant. Now I can go back to doing the best I know to do today. Thanks for staying with us through all of this!
6 comments:
Just because you're too nice to maul a doctor down doesn't mean I'm above it. Seriously. Just point me in the right direction.
You know we pray for your family every day. You know we love you and cherish your relationships beyond words. You know I'm always good for chocolate chip cookies. You know, along with the rest of the world, that you and Ryan are amazing parents. You know God is covering Morgan and Athan RIGHT THIS VERY MOMENT with His protection and adoration.
Try not to let the things you don't know get you too down. And if you need to vent, you know I'll listen! I love you.
Prayers are coming your way at this very moment. You know I've never been through anything like you all are going through, but when Elijah was collicky for 6 months and driving me crazy with crying, I learned that a mother's instinct was usually better than the advice of others. Major difference, my "others" weren't doctors or dieticians, usually just well meaning elderly ladies at Walmart.
Know that you are a fabulous mommy who knows her son. Trust yourself when all of those doctors' opinions start to contradict. Doctors are wonderful, but a mother's love and the prayers of a community are even more wonderful!
We're always here if Morgan needs a play date. Call anytime.
Hang in there Amber - All of us in Amarillo are praying for Athan to grow and prosper!! Darlene Sellmyer
I can well imagine how frustrated you are. It sounds like you and Ryan need to request a consultation with all of Athen's Dr.s present so they can work together on a workable schedule for all of his needs.
You and Ryan are very special people because God has chosen you two to have the priviledge of parenting this precious child who needs your special kind of care. I believe He has chosen well.
We continue to hold you all up in prayer. Neva
I, too, think you have to trust your instincts! You know why? That is what God is telling you to do! You must listen. Take in all the facts from the Doctors, then listen to your instincts for what is best for Athan. You and Ryan are the ones who are with him 24/7 - not the doctors who have their own agenda! You are the one with Athan's agenda on your heart and brain! You are the one who will know when it is right or when it is wrong! LISTEN!! And hang in there. It will all work out.
Jan Thornell (Mer's Mom)
Seriously, Dru and I can take some people out if need be. We hope to see yall tonight - two weeks is too long for no Strebeck time!
God has been with Athan from the moment he was conceived - we know this in so many ways. I know you and Ryan have always done what is best for Morgan and Athan - your parental instincts are unparalleled, and I know that Athan will get everything he needs.
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