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mich
LIF Infant
Member since 10/05 224 total posts
Name:
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Re: Please hug your babies UPDATE page 22
so scary but glad she's making progress!
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Posted 3/8/16 9:15 AM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
oneday
<3
Member since 5/05 4319 total posts
Name:
Pam
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Re: Please hug your babies UPDATE page 22
That is wonderful!! So happy to hear how well she's progressing!!
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| Posted 3/8/16 9:23 AM |
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2BadSoSad
LIF Adult
Member since 8/12 6791 total posts
Name:
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Re: Please hug your babies UPDATE page 22
WOOHOO!!!!! Gave me chills!
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| Posted 3/8/16 10:13 AM |
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JennP
LIF Adult
Member since 10/06 3986 total posts
Name:
Jenn
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Re: Please hug your babies UPDATE page 22
Yay for the positive update!!
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| Posted 3/8/16 10:26 AM |
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Dani
Life is about choices.
Member since 5/05 6532 total posts
Name:
Dani
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Re: Please hug your babies UPDATE page 22
  
go baby girl!!
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| Posted 3/8/16 10:57 AM |
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Rosie0613
LIF Adolescent
Member since 8/10 875 total posts
Name:
Rosie
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Re: Please hug your babies UPDATE page 22
That's great!!! Way to go Lila!!!
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| Posted 3/8/16 11:17 AM |
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FirstMate
My lil cowboy
Member since 10/10 7790 total posts
Name:
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Re: Please hug your babies UPDATE page 22
That's awesome! Seems like she is making nice progress
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| Posted 3/8/16 12:36 PM |
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shellyru
LIF Adolescent
Member since 1/07 685 total posts
Name:
Michelle
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Please hug your babies UPDATE page 22
So so happy to hear and see how great she is doing. Wonderful news!! :)
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| Posted 3/8/16 2:30 PM |
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DaisyGirl
LIF Adult
Member since 2/08 1650 total posts
Name:
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Re: Please hug your babies UPDATE page 22
Go Lila! Happy Birthday to your older daughter! I'm so glad they were able to figure it out so you could do something for her at the hospital :)
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| Posted 3/8/16 8:50 PM |
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CunningOne
***
Member since 5/05 26975 total posts
Name:
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Re: Please hug your babies UPDATE page 22
Happy to hear good updates!! Continued prayers for Lila!
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| Posted 3/8/16 9:46 PM |
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jessnbrian
Only God knows His plan for us
Member since 4/13 7238 total posts
Name:
Jessica
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Please hug your babies UPDATE page 22
Go Lila Go!!
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| Posted 3/8/16 10:38 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Please hug your babies UPDATE page 22
MRI results show evidence of hypoxic ischemia encephalopathy. Basically we just wait and see if and what kind of effects this will have on her. Luckily her brain is still very young and growing so she could potentially have no issues or at least minimal ones. From what I've read cerebral palsy can be an effect of HIE. She'll need to be followed by a neurologist for at least a year between that and the potential for seizures.
On the bright side, she's been doing very well with her bottles. She was able to transition to her regular playtex ventaire from the special medela bottle she had been using with relative ease. We also found out she got into St Mary's and we're just waiting for a bed! I'm so glad because the last 3 nurses we've had have been horrible.
Last night, Lila was due for her bottle at 11 but we had both fallen asleep. Nurse comes in at 1145 and asks if she had eaten. Uh no? You are the one who has to get her formula from the pantry bc I can't, and you didn't so no she did not eat. She finally came back at 1215 with her bottle, which Lila didn't take because she was sleeping. So the nurse sets her up with the ng tube feeding, leaves, but never started it! Luckily I know which button to press by now so I got it started. I asked the doctors if we could do on demand feeds instead of scheduled bc if we were home, I wouldn't be waking Lila to eat, so why are we doing it now when we're expecting her to be taking an entire bottle. They agreed. The nurse during the day today was a piece of work herself. Lila was hungry around 445. I asked the nurse to get me her bottles which she did. I warmed them up and Lila drank 4/6oz starting at 5. I let the nurse know because if she doesn't finish the bottle, she gets the rest via ng tube. She said ok but she'll be right back which was at 545 I waited for awhile and then DH came to relieve me so I could meet up and spend time with DD1. I let him know what was going on and left. DH calls me at 625 saying the nurse still hasn't shown up. He went looking for her or anyone to help out. 7pm is when someone finally showed up to give her the last 2 via ng. Of course that threw her off for the rest of the night. This is why I do not leave her alone for more than 5-10 minutes. She would be completely forgotten about. It's a shame bc I've been mostly happy with the care we've gotten here.
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| Posted 3/8/16 11:15 PM |
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Lara&Aidansmommy
For mom i miss u ETC ILOVEU
Member since 3/07 13921 total posts
Name:
ETC I LOVE YOU
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Re: Please hug your babies UPDATE page 23
thank goodness you KNOW your baby. Id be furious with that nursing staff. Some mothers wouldnt know how to turn on that machine to start her feeding. Im glad she doing better with her bottles though. St Marys will be a breath of fresh air. They are amazing. Many prayers for a speedy recovery. And little to no lasting effects from HIE. Always praying for Lila
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| Posted 3/9/16 7:05 AM |
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Mara1017
LIF Adolescent
Member since 5/11 696 total posts
Name:
Mara
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Re: Please hug your babies UPDATE page 23
Posted by ElizaRags35
MRI results show evidence of hypoxic ischemia encephalopathy. Basically we just wait and see if and what kind of effects this will have on her. Luckily her brain is still very young and growing so she could potentially have no issues or at least minimal ones. From what I've read cerebral palsy can be an effect of HIE. She'll need to be followed by a neurologist for at least a year between that and the potential for seizures.
On the bright side, she's been doing very well with her bottles. She was able to transition to her regular playtex ventaire from the special medela bottle she had been using with relative ease. We also found out she got into St Mary's and we're just waiting for a bed! I'm so glad because the last 3 nurses we've had have been horrible.
Last night, Lila was due for her bottle at 11 but we had both fallen asleep. Nurse comes in at 1145 and asks if she had eaten. Uh no? You are the one who has to get her formula from the pantry bc I can't, and you didn't so no she did not eat. She finally came back at 1215 with her bottle, which Lila didn't take because she was sleeping. So the nurse sets her up with the ng tube feeding, leaves, but never started it! Luckily I know which button to press by now so I got it started. I asked the doctors if we could do on demand feeds instead of scheduled bc if we were home, I wouldn't be waking Lila to eat, so why are we doing it now when we're expecting her to be taking an entire bottle. They agreed. The nurse during the day today was a piece of work herself. Lila was hungry around 445. I asked the nurse to get me her bottles which she did. I warmed them up and Lila drank 4/6oz starting at 5. I let the nurse know because if she doesn't finish the bottle, she gets the rest via ng tube. She said ok but she'll be right back which was at 545 I waited for awhile and then DH came to relieve me so I could meet up and spend time with DD1. I let him know what was going on and left. DH calls me at 625 saying the nurse still hasn't shown up. He went looking for her or anyone to help out. 7pm is when someone finally showed up to give her the last 2 via ng. Of course that threw her off for the rest of the night. This is why I do not leave her alone for more than 5-10 minutes. She would be completely forgotten about. It's a shame bc I've been mostly happy with the care we've gotten here.
So glad that Lila is doing so great. I would absolutely go to the patient advocate and/or social worker to speak about the issues with the nurses. That is completely unacceptable. I understand that your daughter is not the only one who needs their attention but doing something hours after it is suppose to be done is completely unacceptable.
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| Posted 3/9/16 9:46 AM |
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StaceyWill
It's a girl!!!
Member since 6/10 21539 total posts
Name:
Stacey
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Re: Please hug your babies UPDATE page 23
Posted by Mara1017
Posted by ElizaRags35
MRI results show evidence of hypoxic ischemia encephalopathy. Basically we just wait and see if and what kind of effects this will have on her. Luckily her brain is still very young and growing so she could potentially have no issues or at least minimal ones. From what I've read cerebral palsy can be an effect of HIE. She'll need to be followed by a neurologist for at least a year between that and the potential for seizures.
On the bright side, she's been doing very well with her bottles. She was able to transition to her regular playtex ventaire from the special medela bottle she had been using with relative ease. We also found out she got into St Mary's and we're just waiting for a bed! I'm so glad because the last 3 nurses we've had have been horrible.
Last night, Lila was due for her bottle at 11 but we had both fallen asleep. Nurse comes in at 1145 and asks if she had eaten. Uh no? You are the one who has to get her formula from the pantry bc I can't, and you didn't so no she did not eat. She finally came back at 1215 with her bottle, which Lila didn't take because she was sleeping. So the nurse sets her up with the ng tube feeding, leaves, but never started it! Luckily I know which button to press by now so I got it started. I asked the doctors if we could do on demand feeds instead of scheduled bc if we were home, I wouldn't be waking Lila to eat, so why are we doing it now when we're expecting her to be taking an entire bottle. They agreed. The nurse during the day today was a piece of work herself. Lila was hungry around 445. I asked the nurse to get me her bottles which she did. I warmed them up and Lila drank 4/6oz starting at 5. I let the nurse know because if she doesn't finish the bottle, she gets the rest via ng tube. She said ok but she'll be right back which was at 545 I waited for awhile and then DH came to relieve me so I could meet up and spend time with DD1. I let him know what was going on and left. DH calls me at 625 saying the nurse still hasn't shown up. He went looking for her or anyone to help out. 7pm is when someone finally showed up to give her the last 2 via ng. Of course that threw her off for the rest of the night. This is why I do not leave her alone for more than 5-10 minutes. She would be completely forgotten about. It's a shame bc I've been mostly happy with the care we've gotten here.
So glad that Lila is doing so great. I would absolutely go to the patient advocate and/or social worker to speak about the issues with the nurses. That is completely unacceptable. I understand that your daughter is not the only one who needs their attention but doing something hours after it is suppose to be done is completely unacceptable.
ITA. Completely unacceptable. This is food for a baby and they're taking hours to come back?! Unreal!
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| Posted 3/9/16 10:01 AM |
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MrsT809
LIF Adult
Member since 9/09 12167 total posts
Name:
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Re: Please hug your babies UPDATE page 23
So sorry to hear about the struggles but glad to hear she's continuing to improve. Hopefully she gets moved soon and all goes smoothly with the move.
There is an organization called hope for hie and they have a fb group by the same name you may want to check out at some point. Some of the little ones born with the same type of hemorrhage as my youngest ended up with hie so I've heard of the group through that.
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| Posted 3/9/16 10:36 AM |
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CL2012
LIF Toddler
Member since 1/13 374 total posts
Name:
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Re: Please hug your babies UPDATE page 23
It's unfortunate, but true, that you really need to be advocating for her and vigilant 24/7. This time lapse in feeding sounds unacceptable to me. You'd mentioned previously that she could have been discharged already, but they're letting you ride out the remaining days before her transfer in the hospital. That fact tells me that if you could manage her care at home, then you can manage her care in the hospital. Start demanding that you are either given a supply of formula for the day or gain access to wherever it's stored. Or bring your own of the same brand? You will feed her and keep the nurses informed. I don't know much about the NG tube process, but it sounds like you have taken care of starting that also. So is it completely out of the question that you could obtain, prepare and serve the formula and feed the remaining ounces through the NG tube without a nurse there? I assume this is what you would be doing if you'd been discharged. The squeaky wheel gets the oil. Good luck!
ETA this may not seem like a battle worth fighting, because it's "just formula/feeding schedule". but i know from experience, that when you have a baby hospitalized for a long time, for your own sanity you need to have some kind of normalization. and feeding your baby when and how you see fit is a normal part of parenting and will help you stay sane in a rather insane circumstance! it is good for the soul to regain some control of the situation wherever you can.
Message edited 3/9/2016 1:11:46 PM.
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| Posted 3/9/16 1:07 PM |
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Re: Please hug your babies UPDATE page 23
Holy Moses!
I haven't been on lately and am just catching all this now. I sort of jumped ahead to your more recent updates and thank God she is doing so much better now!
I can't even imagine what you went through, how traumatizing for all of you.
St. Mary's is wonderful, your little girl will get the best possible re-hab there.
Will be praying for her continued recovery and your strength.
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| Posted 3/9/16 5:07 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Please hug your babies UPDATE page 23
I'm so tired. Lila hasn't been sleeping well at night. I ended up breaking hospital rules and had her sleep on me in the chair. It was the only way I could at least sit and rest my eyes. I think I've had 12 hours of sleep over the last 3-4 days. I don't even know what day it is half the time. We're still waiting for a bed at St Mary's so until then, Lila continues to see the neurologist, physical therapist, and speech pathologist while she's here. The on demand feedings have been going much better than the scheduled feedings and there is a possibility that she will have her ng tube removed soon!
Now that things have settled down a bit, my mother feels the need to tell me everything that she thinks is wrong with me. Yesterday she said I was detached from DD1 because I spend most of my time at the hospital. Today she told me I need counseling and that I need to be doing PT with Lila and all these other things. And she prefaces every criticism with- "I can't imagine what you're going through but...." Or "I know you'll be mad but I have to tell you that...." Oh and that because I did react negatively to her incessant criticisms that I am unappreciative of everything she does. Always makes it about her, no matter what is happening. I've really had enough. I'd really like to see how she would handle a toddler at home and a sick infant in the hospital with minimal sleep and no help from 9pm to 5pm every day.
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| Posted 3/10/16 2:20 PM |
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J9-13
We're gonna be big sisters!
Member since 6/06 14887 total posts
Name:
J9
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Re: Please hug your babies UPDATE page 23
Posted by ElizaRags35
I'm so tired. Lila hasn't been sleeping well at night. I ended up breaking hospital rules and had her sleep on me in the chair. It was the only way I could at least sit and rest my eyes. I think I've had 12 hours of sleep over the last 3-4 days. I don't even know what day it is half the time. We're still waiting for a bed at St Mary's so until then, Lila continues to see the neurologist, physical therapist, and speech pathologist while she's here. The on demand feedings have been going much better than the scheduled feedings and there is a possibility that she will have her ng tube removed soon!
Now that things have settled down a bit, my mother feels the need to tell me everything that she thinks is wrong with me. Yesterday she said I was detached from DD1 because I spend most of my time at the hospital. Today she told me I need counseling and that I need to be doing PT with Lila and all these other things. And she prefaces every criticism with- "I can't imagine what you're going through but...." Or "I know you'll be mad but I have to tell you that...." Oh and that because I did react negatively to her incessant criticisms that I am unappreciative of everything she does. Always makes it about her, no matter what is happening. I've really had enough. I'd really like to see how she would handle a toddler at home and a sick infant in the hospital with minimal sleep and no help from 9pm to 5pm every day.
Oh Momma! 
Sending you a virtual hug.
I'm sorry your Mom feels like this is an appropriate time to unload her feeling on you. Sounds very selfish. I'm so sorry. Just focus on your girl like you've been doing all along. You are strong and doing the very best that you can
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| Posted 3/10/16 3:22 PM |
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MrsT809
LIF Adult
Member since 9/09 12167 total posts
Name:
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Please hug your babies UPDATE page 23
Sending hugs! You must be exhausted. I'm sorry your mom is adding to your stress. Just keep doing what you have to do to get through this time and don't let anyone make you feel bad about it.
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| Posted 3/10/16 7:45 PM |
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LSP2005
Bunny kisses are so cute!
Member since 5/05 19458 total posts
Name:
L
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Re: Please hug your babies UPDATE page 23
You do what you have to do. Don't apologize or excuse it to make nice with your mom. Honestly, she needs to myob. I would just say mom, now is not the time for your opinions. You can either help me, or I will find someone else.i know what it is like to have an immediate family member who pulls BS like this, making the issue about them. Can your MIl help? Do you have anyone else who could help you?
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| Posted 3/10/16 8:14 PM |
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Re: Please hug your babies UPDATE page 23
I am so sorry you have to go through all this. Sending prayers for a speedy recovery. Im sure you just want your life back, your own bed, and to just have the family back in one home. Take it one day at a time, things seem to be getting better. Do what you have to do to get rest. You are doing the best you can.
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| Posted 3/10/16 8:52 PM |
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ElizaRags35
My 2 Girls
Member since 2/09 20494 total posts
Name:
Me
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Please hug your babies UPDATE page 23
The ng tube is out! She's on 100% bottle feeds and the doctors are amazed at her progress! We're still waiting for a bed at St Mary's. I really hope it happens soon because we're basically just hanging around stonybrook til it happens.
In other news, I'm at home tonight, for the first time in 24 nights, for more than 30 minutes. I've had little to no sleep at all this week. I took DD1 to dinner, we got home and put our Jammies on (first time wearing pjs and not wearing a bra for anything other than a shower in 24 days) and we cuddled, played, and watched some MMC. It feels so nice to lay flat on a bed instead of a chair. Now all I need is for DD1 to sleep in!
Message edited 3/11/2016 10:39:14 PM.
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| Posted 3/11/16 10:38 PM |
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Rosie0613
LIF Adolescent
Member since 8/10 875 total posts
Name:
Rosie
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Re: Please hug your babies UPDATE bottom page 23
Yay!!! So awesome for Lila!! I'm so happy she is doing better.
Enjoy your time with DD1 and get some much needed rest!
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| Posted 3/11/16 10:51 PM |
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