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I hope everything turns out ok and you guys will get some answers from the specialist soon.
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@spaniellove: Hoping you get some good answers soon! Sending
and good thoughts!
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Thinking of you and J
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Oh my! How scary! Glad the Snuza worked! I was obsessed with our Angel Care monitor for a good 8-9 months!
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So scary! Glad the Snuza did its job!! Hope you get some clarity soon from the drs!
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They don't think he has anything infectious but we're going to stay and get some help with different issues. They'll go over the plan during rounds but we were told someone would look at his feeding issues and also help figure out whether he has an allergy and of course they're working on his breathing. His pulse ox is consistently low and they're trying to figure out whether he has something in his lungs, he is aspirating when he feeds, etc.
We're sharing the room with a baby who has severe breathing issues and between the two of them the alarms are always going off!
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I'm glad you're getting help. I always demanded the pertussis test because I was terrified m had whooping cough. Turns out that got us a private room.
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@spaniellove: just saw this update, I'm so sorry! I hope you get some answers soon and the stay is short.
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@spaniellove: It sounds like you're in the right place. I hope your stay is short and he feels better soon!
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@spaniellove: just saw these updates. I am so sorry..I know I've said it before but gosh, you guys deserve a break! I hope you get some answers.
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Just read your update! I second @sorrycharlie: If anyone deserves a break, it's you and LO. I'm here for you and always thinking about you
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@spaniellove: I'm so glad you are getting the help you need! Hang in there, Mama.
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@spaniellove: just a thought- have you made contact with the Ronald McDonald House out there? I know you're kinda far away from your house. They might be able to give you some help if you need a break or somewhere to go for a little bit.
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@LovelyPlum: somewhere to go sounds so nice right now. DH keeps telling me to at least go walk around campus for old times' sake and to get some time to myself which I might do.
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@spaniellove: thinking of you guys! If there's anything we can do, please let us know!
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@spaniellove: I sent you info on the RMH! I hope they can help you!
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@LovelyPlum: I got it, thank you! We were just about to sneak out and get some sunlight and then he had some long apnea episodes! Of course now I'm never going to leave this monitor.
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oh how scary!! i hope they have some answers for you soon
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@spaniellove: I swear they know when you're about to leave and start alarming!
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@spaniellove: Is he in a step-down (not intensive care, but still more highly monitored) unit? Take care of you, mama!!!
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@spaniellove: I'm really glad he's in the hospital getting the help he needs. Well done you, for following your gut. I hope they figure out what is wrong and he gets well really soon.
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Huge hugs. I am sorry you have to deal with all of this.
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@spaniellove: Thinking of you guys! I hope they're able to figure out what's up and everything ends up okay.
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@FliegepilzHut: I have no idea! The other baby in our room has pretty intense needs; I keep hearing about an NG tube and central line. When our nurse found out I was afraid to leave the room she told me she only had one other patient and could sit and watch LO for me. I'm fine when he's awake; it's naps I'm afraid of because the brady and apnea alarms start going off as soon as he's in a deep sleep.
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Just wanted to tell you I'm thinking about you. I've been following your story and just wanted to send you my support. I'm glad you're getting the testing needed finally, even if it means admitting him. I hope you also get some time for you. Hugs.
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@spaniellove: That sounds perfect! I was just hoping that he was being monitored closely enough that you can (in good conscious) step out to get a nap or a bite to eat. I hope they get answers and get you all home soon!
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So sorry you are going through all this. I hope your hospital stay is short and that they can get all the answers they need to help your sweet baby.
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Sending hugs your way
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@spaniellove: trust those nurses momma! They know what they are doing and are amazing! Hope you are able to get some rest. Praying for you all.
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@spaniellove: if you need anything please let me know. Does your hospital have volunteers that you can ask to sit with him? Always made me feel better when I needed some time
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@spaniellove: Thinking about you guys. So glad you followed your gut... all those alarms sound scary. I hope they can get to the bottom of what is causing it, or at the very least, send you home with hospital-grade monitoring.
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Sending you hugs!
I hope everything gets sorted out soon!
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So sorry to hear about your LO's issues. Hugs and hope you get to go home soon.
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@Ms.Badger: No idea about the volunteers! Depending on how long we're here I may ask about it.
The head of genetics came by and said LO's face doesn't look obvious for a genetic disorder but she was concerned about how floppy his head was when she picked him up in a certain way which indicated low muscle tone. I've seen him hold his head up great so I was surprised to see him looking like a Pez dispenser. She said she'll do their standard hearing loss panel and also have him karyotyped.
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I'm just catching up, I'm so sorry all of this is happening to your family. I hope you get the care and answers you need for J!
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Also just catching up. This is so scary! Hope you were able to get some rest, you really need a break! And I hope they're able to tell you what's causing the apnea and how to reduce the chance of it in the future!
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I'm so sorry to hear all of this is going on! I hope you get some rest and get to go home soon!!
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@spaniellove: thinking of you
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Oh my goodness, just saw this. I am thinking of you!
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That's terrifying!!! So relieved he's okay though.
and good thoughts!
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188 comments