Norah won't likely be leaving the PICU too soon. She isn't any worse, but she isn't much better either. She's back to her baseline ventilator settings (I always correct people who say "home" settings), but is still not tolerating her feeds, and is still on a feeding pump (she hasn't needed one in a VERY long time), taking her feeding over an hour and a half instead of the usual 10-20 minutes via gravity without a pump. She is still working quite hard to breathe, which leaves less room in her body for formula.
She's still sweaty, off and on feverish, and mostly not herself. She plays now and then, but mostly drifts off to doze intermittently throughout the day. I'm not sure how long it will take her to get over the hump, which means her estimated stay at the PICU is unknown. Yes, that means that we may or may not have our Christmas at home. I won't think about that until it gets closer. We have three weeks to get back to where we were, but I'm not sure that's feasible.
I was pretty emotional last night. I think everything just sort of caught up with me. I've been pretty cavalier about this PICU stay, just assuming it was a bump in the road and she would immediately bounce right back. It's taking longer than I thought it would, so I think my denial of the situation finally broke through. I shouldn't have been looking up medical journals online, but I read that mortality rate for ventilator associated pneumonias are widely varied, but generally in the range of 24-50%. UGH. Now I know for so many reasons, Norah does not and will not fit into that percentage. It just isn't her situation. She is doing too well... right?
Last night I wistfully sobbed about missing the time that Norah was in my belly. I carried her with me everywhere I went. She got the hiccups every day, which would send a quick little jolt in my belly. She was a gentle kicker (unlike Harper), which is just how she is now: so surprisingly gentle for her age. She was always snuggled up within me, no matter where I was. I never had to say goodbye to her at the end of the day. Jeff reminded me that I couldn't be selfish in this, and that if she was still in my belly, he couldn't snuggle her too. We wouldn't be able to enjoy her smiles, her belly laughs, or any of the wonderful things that Norah shares with us. Of course I wouldn't really want her back in there, but I sure miss never having to be separated from her.
I probably shouldn't be allowed to use the Internet anymore. In addition to reading awful things about ventilator associated pneumonia, I also briefly looked at a couple videos of kids Norah's age. I wanted to see what a kid with typical development would be like. Of course Harper fit in that category, but I just couldn't remember the look and feel of it. Oh boy, what a mistake. These kids were such busy bodies. They walked everywhere. The tumbled, toddled, and talked. Their voices were so sweet. They played on the couch, the carpet, and everything they could get their hands into. I quickly closed the videos. My emotions are torn here. Though I pine for Norah to be free of her tethers, I don't want those babies. I want mine, and that means at any cost.
So we wait for Norah to get better. We'll wait for her to get back to where she was before all this. We'll wait for her to come home. We'll wait for her to get strong enough to not need all of her medical gear. We wait, we wait, we wait.
She's still sweaty, off and on feverish, and mostly not herself. She plays now and then, but mostly drifts off to doze intermittently throughout the day. I'm not sure how long it will take her to get over the hump, which means her estimated stay at the PICU is unknown. Yes, that means that we may or may not have our Christmas at home. I won't think about that until it gets closer. We have three weeks to get back to where we were, but I'm not sure that's feasible.
I was pretty emotional last night. I think everything just sort of caught up with me. I've been pretty cavalier about this PICU stay, just assuming it was a bump in the road and she would immediately bounce right back. It's taking longer than I thought it would, so I think my denial of the situation finally broke through. I shouldn't have been looking up medical journals online, but I read that mortality rate for ventilator associated pneumonias are widely varied, but generally in the range of 24-50%. UGH. Now I know for so many reasons, Norah does not and will not fit into that percentage. It just isn't her situation. She is doing too well... right?
Last night I wistfully sobbed about missing the time that Norah was in my belly. I carried her with me everywhere I went. She got the hiccups every day, which would send a quick little jolt in my belly. She was a gentle kicker (unlike Harper), which is just how she is now: so surprisingly gentle for her age. She was always snuggled up within me, no matter where I was. I never had to say goodbye to her at the end of the day. Jeff reminded me that I couldn't be selfish in this, and that if she was still in my belly, he couldn't snuggle her too. We wouldn't be able to enjoy her smiles, her belly laughs, or any of the wonderful things that Norah shares with us. Of course I wouldn't really want her back in there, but I sure miss never having to be separated from her.
I probably shouldn't be allowed to use the Internet anymore. In addition to reading awful things about ventilator associated pneumonia, I also briefly looked at a couple videos of kids Norah's age. I wanted to see what a kid with typical development would be like. Of course Harper fit in that category, but I just couldn't remember the look and feel of it. Oh boy, what a mistake. These kids were such busy bodies. They walked everywhere. The tumbled, toddled, and talked. Their voices were so sweet. They played on the couch, the carpet, and everything they could get their hands into. I quickly closed the videos. My emotions are torn here. Though I pine for Norah to be free of her tethers, I don't want those babies. I want mine, and that means at any cost.
So we wait for Norah to get better. We'll wait for her to get back to where she was before all this. We'll wait for her to come home. We'll wait for her to get strong enough to not need all of her medical gear. We wait, we wait, we wait.
I pondered for a full 10 minutes and then wrote and re-wrote several things that I thought might help reduce your heartache. Truth is, I don't have anything. I doubt there are any word that can do that. We can't come visit, still fighting colds. The only thing we can do is to pray. I know that's not your thing, but I want you to know that Norah(you & Jeff too) are prayed for by everyone in our home several times a day. I pray that you, as a mom will be able to have the strength to do all that is asked of you even when you feel like you can't do it anymore. We love you guys and if you need us to do anything please let us know. Sorry to get so religious on you, just couldn't help it.
ReplyDeleteOh, sweet Norah. Things like this just aren't fair. I catch myself playing the what-if game, which is a horrible thing to do. She doesn't deserve any of this, and she should definitely be home for Christmas! My husband is always telling me "you can't help everyone", because he knows I'd like to. I can't read posts like this and NOT want to take some of the hurt away. Your family is so blessed to have sweethearts like Norah & Harper. Sometimes it's just hard to see the glass half full. I hope the coming weeks bring progress for Norah. But, either way, I hope you can all spend Christmas together (in the hospital, or out). You guys are always in my thoughts.
ReplyDeleteThank you both so much. Having this sort of support out there is a huge comfort.
ReplyDeleteOh my dear sweet friend. I'm so sorry! We will get her better. I promise! Sending healing fairy kisses to your sweet sweet little baby. I love her! And I love you. Stay strong although I can't imagine how tired you are of fighting. Norah's a fighter!
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