We were thrown for a loop today. Amelia is doing great on her cannula. She's been hanging around 40-45%.. she had a pretty scary bradycardia - when her heartbeat and breath rates drop very low and she desats very low - when water dumped into her nose from the vent tubing and then she choked on it. (It collects because of the humidity in the heated hoses and the O2 running through it). She had two pretty bad dumps in a row which caused it. But recovered and she's been very good all the rest of the day and they were able to wean her down a bit on her O2 since the episode.
The plan for the cannula is to turn down her pressure every 48hrs, if she continues to be in the same O2 range... she's on 3LPMs now, so hopefully she will go down to 2 1/2 LPMs tomorrow.
She was happy and awake and TALKING this morning. Xina hadn't heard her yet, and I thought the nurse was putting me on... until I got to the NICU and heard her yelp. Not having a previous child, I don't know the first thing about when this should start happening. We've been so used to her quietness over the last 6 months - other than her occasional cries, which are short and stifled - that it just sort of hit us. It truly is amazing. All I got was that one yelp for the rest of the afternoon and evening... but it was enough, and heartwarming.
We were hit was some scary scenarios today however, and we're still shaken up. The first is that she is no longer sucking properly on her pacifier or her bottle, and we're getting close to the point where babies won't learn it if they don't do it now. If she doesn't learn to suck on them right, then she won't learn to eat from a bottle, and they'll have to put a G-tube/feeding tube in until she was old enough to chew and swallow. THAT is not a scenario we want, so we're all out training her right now. I spent about 10 minutes on it tonight with no success, even putting milk on the nipple to entice her. She sucks and gums it, but not properly. This is something new, as she'd never done that with me before - she'd always been good about it. She has choked on her own saliva several times while sucking, and I'm hoping that those bad feelings didn't turn her off it, and hope that she'll revert to the proper method. But according to the OT, we're running out of time (though what that true time limit is, she didn't really say).
The other news we had today is regarding her eyes and a bit worse. Xina and I were both a little concerned she was getting a lazy eye, because she looks cross-eyed often, as if looking at the CPAP tube between her eyes. So we asked the doctor to check her out. The doctor said her muscles seem fine, and she ruled out a lazy eye or underdeveloped muscle. But her concern is that the sight signals are not actually getting to the proper place in her brain, and that, in fact, she could have partial or complete blindness. Of course, Xina was told all this by herself and was stunned. It's not something we had been expecting at this point, especially after the MRI came back so clean.
It came out of nowhere it seems to us. She has always seemed to track well when we play with her, or move, or rattle something or turn on the mobile while she watches. We're not quite sure what to think. On Monday or Tuesday, they will run an EKG test to watch the nerve signals pass through the brain and make a determination of her condition. We'll have the results the next day or second day after that. It could honestly be nothing. It could be something. We're trying to stay positive, but truthfully, I haven't really formatted all the information and Xina went home thoroughly upset.
Yet Amelia remains the same strong and happy girl, despite the tubes and noise and lights and disturbances. She's sleeping and breathing well on the cannula. She listens and likes to be held and touched and rarely fusses, even when getting her assessments or farting. And now she's talking! If the stories we hear from the nurses are true, then Xina and Amelia's two grandmothers will have a run for their money about who can talk the mile the fastest.
The plan for the cannula is to turn down her pressure every 48hrs, if she continues to be in the same O2 range... she's on 3LPMs now, so hopefully she will go down to 2 1/2 LPMs tomorrow.
She was happy and awake and TALKING this morning. Xina hadn't heard her yet, and I thought the nurse was putting me on... until I got to the NICU and heard her yelp. Not having a previous child, I don't know the first thing about when this should start happening. We've been so used to her quietness over the last 6 months - other than her occasional cries, which are short and stifled - that it just sort of hit us. It truly is amazing. All I got was that one yelp for the rest of the afternoon and evening... but it was enough, and heartwarming.
We were hit was some scary scenarios today however, and we're still shaken up. The first is that she is no longer sucking properly on her pacifier or her bottle, and we're getting close to the point where babies won't learn it if they don't do it now. If she doesn't learn to suck on them right, then she won't learn to eat from a bottle, and they'll have to put a G-tube/feeding tube in until she was old enough to chew and swallow. THAT is not a scenario we want, so we're all out training her right now. I spent about 10 minutes on it tonight with no success, even putting milk on the nipple to entice her. She sucks and gums it, but not properly. This is something new, as she'd never done that with me before - she'd always been good about it. She has choked on her own saliva several times while sucking, and I'm hoping that those bad feelings didn't turn her off it, and hope that she'll revert to the proper method. But according to the OT, we're running out of time (though what that true time limit is, she didn't really say).
The other news we had today is regarding her eyes and a bit worse. Xina and I were both a little concerned she was getting a lazy eye, because she looks cross-eyed often, as if looking at the CPAP tube between her eyes. So we asked the doctor to check her out. The doctor said her muscles seem fine, and she ruled out a lazy eye or underdeveloped muscle. But her concern is that the sight signals are not actually getting to the proper place in her brain, and that, in fact, she could have partial or complete blindness. Of course, Xina was told all this by herself and was stunned. It's not something we had been expecting at this point, especially after the MRI came back so clean.
It came out of nowhere it seems to us. She has always seemed to track well when we play with her, or move, or rattle something or turn on the mobile while she watches. We're not quite sure what to think. On Monday or Tuesday, they will run an EKG test to watch the nerve signals pass through the brain and make a determination of her condition. We'll have the results the next day or second day after that. It could honestly be nothing. It could be something. We're trying to stay positive, but truthfully, I haven't really formatted all the information and Xina went home thoroughly upset.
Yet Amelia remains the same strong and happy girl, despite the tubes and noise and lights and disturbances. She's sleeping and breathing well on the cannula. She listens and likes to be held and touched and rarely fusses, even when getting her assessments or farting. And now she's talking! If the stories we hear from the nurses are true, then Xina and Amelia's two grandmothers will have a run for their money about who can talk the mile the fastest.
5 comments:
What a day! That really did come out of left field, didn't it? No wonder you were shaken up. We'll keep praying, this time that her eye issues are minor (keep thinking about the fact that you can tell she's been tracking and responding) and that her sucking will come back. Kiss those chubby little cheeks for all of us over here in Mobile. Marie Grip
I wish I could give you guys a big hug! We will pray extra hard for sweet Amelia, that she will learn to take a bottle and for her vision. And we will keep praying for you and your strength - I know you need it. I am impressed by your endurance- hospitals just suck it right out of you. I miss you! Love, Bridget
I guess I'm confused about the sucking thing. I don't undersand "not learning it." Is there a physical problem with the muscles in her mouth or throat? Why choke on her own saliva? I have every ounce of faith that this, like many other things, Amelia will do in her own time.
I pray so hard for all of you. Amelia's story and your struggles are teaching me on a daily basis just how blessed I am that my children are bright and healthy. You inspire me when some days I feel like throwing my hands up and screaming like a wild woman.
Amelia will be fine. I know it. I pray each day to God, Jesus, Mother Mary and the one who I feel is my own personal guardian angel. All of Heaven and earth are on your side and will take care of Amelia. I know it and I believe it. I really do believe it. I love you all.
Erica, one of the results of Amelia's long ventillation and the necessary OG feeding tube is her not being able to grasp the "suck gets the milk" concept. So she hasn't learned to retrieve the milk from the bottle herself, which is generally a picked up instinct. Until she learns to suck properly, basically, she can't get the milk/formula out of the bottle. We hope now that she's on cannula, that the OT will be more aggressive on her attempts and that Amelia picks that up. But sometimes when a baby has gone this long without learning it, they won't pick it up. Thank you for the prayers - I hope y'all are doing well. Todd
Our prayers are with you.
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