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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 bottom of page 16
I pray for hope for you. Hope is a very powerful emotion. Your feelings are 100% normal. Please know regardless of having a flu shot or not, she still could have gotten the flu. You were the one to raise the alarm bells and question your pediatrician when they incorrectly diagnosed your daughter. You relied on your mothers instinct, which is so powerful. Know that your almost two year old knows you love her, and you can celebrate her birthday simply now, but nicer later. She will not realize it. As a mother, we know, and will always carry it in our hearts, but since she is so little, it will be ok. I hope that Lila will be ok long term and that her tracking is due to the medication. She is a fighter. You and your family are in my thoughts and prayers.
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Posted 2/28/16 6:09 PM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
bunnyluck
LIF Adult
Member since 1/14 3196 total posts
Name:
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Please hug your babies UPDATE bottom of page 16
Praying for you all daily.
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| Posted 2/28/16 7:13 PM |
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mnmsoinlove
Mommy to 2 sweet girls!
Member since 3/09 8585 total posts
Name:
Melissa
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Re: Please hug your babies UPDATE bottom of page 16
I check every day to see how your little one is doing. I'll continue to pray for her. 
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| Posted 2/28/16 7:51 PM |
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ANewDayHasCome
Love multiplies, not divides
Member since 11/12 14481 total posts
Name:
Me
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Re: Please hug your babies UPDATE bottom of page 16
Posted by ElizaRags35
DH went home with our almost 2 year old for the first time since we got here last Tuesday. Standing next to Lilas crib as she stared out into nothing I finally broke down. I miss my baby. The one who laughed at her sister stealing her toys, the one who had the biggest, brightest smile, even the one who was colic for the first 4 months of her life. I miss her looking at me when I talk to her. I miss her just looking at me. Or at anything. I miss her without tubes in her nose and wires coming out from everywhere. I hope she knows I'm here with her and for her. All the time. I hope this is temporary but as the days go by, she's more awake but doesn't focus on anything. I feel unbelievable guilt. Guilt that I didn't get a flu shot while pregnant. Or at all. That I didn't bring her to the doctor soon enough. That my 23m old has only seen us in the hospital when someone brings her to visit. That her 2nd birthday is a week from Sunday and I have no idea if we'll be home nor do we have anything planned. I'm tired. I'm tired of being the strong one. I'm tired of people telling me that she's going to be perfectly fine and as good as new once this is over. Of course that's what I want, more than anything in the world. But I feel like I need to be realistic. In my head I'm already thinking of what life might be like for us once we go home, whenever that may be. All of the specialists we will likely have to see - PT, neurologists, and who knows what else. How am I going to work and take her to appointments. How do I send her to daycare? Then I feel guilty for worrying about this stuff when instead of being in the hospital with a living, breathing child, I could have been at her funeral this week had the doctors not been successful with resuscitating her.
I hate this. I want to go back in time and do something to prevent any of this from happening.
Sorry to be such a Debbie downer. I've held everything to be strong but being alone tonight just brought every emotion I've bottled inside out.
My heart literally hurts for you. I'm glad you vented though. You can't be strong all the time for everyone. You're only human. And this is NOT YOUR FAULT.
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| Posted 2/28/16 8:27 PM |
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janedoe
3 GIRLS!!!!
Member since 8/09 3184 total posts
Name:
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Re: Please hug your babies UPDATE bottom of page 16
Prayers for you and your family
I am so sorry you are going through this all
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| Posted 2/28/16 9:59 PM |
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Hofstra26
Love to Bake!
Member since 7/06 27915 total posts
Name:
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Re: Please hug your babies UPDATE bottom of page 16
Posted by ElizaRags35
DH went home with our almost 2 year old for the first time since we got here last Tuesday. Standing next to Lilas crib as she stared out into nothing I finally broke down. I miss my baby. The one who laughed at her sister stealing her toys, the one who had the biggest, brightest smile, even the one who was colic for the first 4 months of her life. I miss her looking at me when I talk to her. I miss her just looking at me. Or at anything. I miss her without tubes in her nose and wires coming out from everywhere. I hope she knows I'm here with her and for her. All the time. I hope this is temporary but as the days go by, she's more awake but doesn't focus on anything. I feel unbelievable guilt. Guilt that I didn't get a flu shot while pregnant. Or at all. That I didn't bring her to the doctor soon enough. That my 23m old has only seen us in the hospital when someone brings her to visit. That her 2nd birthday is a week from Sunday and I have no idea if we'll be home nor do we have anything planned. I'm tired. I'm tired of being the strong one. I'm tired of people telling me that she's going to be perfectly fine and as good as new once this is over. Of course that's what I want, more than anything in the world. But I feel like I need to be realistic. In my head I'm already thinking of what life might be like for us once we go home, whenever that may be. All of the specialists we will likely have to see - PT, neurologists, and who knows what else. How am I going to work and take her to appointments. How do I send her to daycare? Then I feel guilty for worrying about this stuff when instead of being in the hospital with a living, breathing child, I could have been at her funeral this week had the doctors not been successful with resuscitating her.
I hate this. I want to go back in time and do something to prevent any of this from happening.
Sorry to be such a Debbie downer. I've held everything to be strong but being alone tonight just brought every emotion I've bottled inside out.
I have no words and I cannot begin to imagine your pain. I'm so sorry for everything you're going through and I continue to pray that Lila recovers!!!
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| Posted 2/28/16 10:57 PM |
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CindySN23
Stop, Think & Breathe...
Member since 8/11 3550 total posts
Name:
Cindy
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Re: Please hug your babies UPDATE bottom of page 16
I am so sorry that your family is going through this...there really are no words
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| Posted 2/29/16 7:58 AM |
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NYCGirl80
I love my kiddies!
Member since 5/11 10413 total posts
Name:
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Re: Please hug your babies UPDATE bottom of page 16
Continuing to have your baby and your entire family in my thoughts....
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| Posted 2/29/16 8:53 AM |
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Wishes1111
LIF Adolescent
Member since 12/10 853 total posts
Name:
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Re: Please hug your babies UPDATE bottom of page 16
Hoping today was a better day! Hugs & continued prayers
Message edited 2/29/2016 3:14:36 PM.
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| Posted 2/29/16 3:13 PM |
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Mrs213
????????
Member since 2/09 18986 total posts
Name:
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Re: Please hug your babies UPDATE bottom of page 16
Posted by ElizaRags35
DH went home with our almost 2 year old for the first time since we got here last Tuesday. Standing next to Lilas crib as she stared out into nothing I finally broke down. I miss my baby. The one who laughed at her sister stealing her toys, the one who had the biggest, brightest smile, even the one who was colic for the first 4 months of her life. I miss her looking at me when I talk to her. I miss her just looking at me. Or at anything. I miss her without tubes in her nose and wires coming out from everywhere. I hope she knows I'm here with her and for her. All the time. I hope this is temporary but as the days go by, she's more awake but doesn't focus on anything. I feel unbelievable guilt. Guilt that I didn't get a flu shot while pregnant. Or at all. That I didn't bring her to the doctor soon enough. That my 23m old has only seen us in the hospital when someone brings her to visit. That her 2nd birthday is a week from Sunday and I have no idea if we'll be home nor do we have anything planned. I'm tired. I'm tired of being the strong one. I'm tired of people telling me that she's going to be perfectly fine and as good as new once this is over. Of course that's what I want, more than anything in the world. But I feel like I need to be realistic. In my head I'm already thinking of what life might be like for us once we go home, whenever that may be. All of the specialists we will likely have to see - PT, neurologists, and who knows what else. How am I going to work and take her to appointments. How do I send her to daycare? Then I feel guilty for worrying about this stuff when instead of being in the hospital with a living, breathing child, I could have been at her funeral this week had the doctors not been successful with resuscitating her.
I hate this. I want to go back in time and do something to prevent any of this from happening.
Sorry to be such a Debbie downer. I've held everything to be strong but being alone tonight just brought every emotion I've bottled inside out.
I've been praying for you non stop. You have a right to feel everything you are feeling. Sending many prayers
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| Posted 2/29/16 3:25 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 bottom of page 16
No real update. I'm just having a bad day. Everyone and everything annoys me.
I was so spoiled with the level of care in PICU that I'm frustrated with the regular floor. I felt more comfortable leaving Lila in the care of the PICU. I could leave the hospital to grab dinner or run home quick. Here on the regular floor, not so much. I feel like we're practically fending for ourselves with the exception of giving meds. They were so much more organized and informed in PICU too. Here I feel like I have to go over everything or explain things whenever there's a shift change. Also for instance, shift change was at 7 and I still have no idea who our nurse is for tonight.
The dr did mention something about how we'll see how things are at the end of the week and if Lila is doing well off the cannula (which she's still on) she may be able to go home even if she has the ng tube. I don't know how comfortable I am with that. Of course speech and swallow didn't come to work with her today and they won't let us attempt bottle feeding ourselves bc there's a risk of aspiration since she does not suck on the nipple.
I'm just very frustrated.
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| Posted 2/29/16 9:15 PM |
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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 17
Im so sorry. I cannot imagine how physically exhausted you must be on top of already heightened emotions. I am so sorry. I wish I had some magic words to make it all better, I wish I did. I continually pray for you, your family and your little girl. I hope that soon this is all a distant memory for you.
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| Posted 2/29/16 9:18 PM |
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luvmykids8
LIF Adult
Member since 9/15 2050 total posts
Name:
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Re: Please hug your babies UPDATE page 17
Posted by ElizaRags35
No real update. I'm just having a bad day. Everyone and everything annoys me.
I was so spoiled with the level of care in PICU that I'm frustrated with the regular floor. I felt more comfortable leaving Lila in the care of the PICU. I could leave the hospital to grab dinner or run home quick. Here on the regular floor, not so much. I feel like we're practically fending for ourselves with the exception of giving meds. They were so much more organized and informed in PICU too. Here I feel like I have to go over everything or explain things whenever there's a shift change. Also for instance, shift change was at 7 and I still have no idea who our nurse is for tonight.
The dr did mention something about how we'll see how things are at the end of the week and if Lila is doing well off the cannula (which she's still on) she may be able to go home even if she has the ng tube. I don't know how comfortable I am with that. Of course speech and swallow didn't come to work with her today and they won't let us attempt bottle feeding ourselves bc there's a risk of aspiration since she does not suck on the nipple.
I'm just very frustrated.
I know....just stay strong.
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| Posted 2/29/16 9:20 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 17
If you are not getting what you think you need ask for the patient advocate to help you. If they promised pt and no one showed up you need to advocate. Do you have one doctor who is hers to check on her at the hospital? Make friends with the nurses. Bring an edible arrangement or cookies. Squeaky wheel gets greased. Be the wheel.
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| Posted 2/29/16 9:24 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 17
Posted by 2BadSoSad
Im so sorry. I cannot imagine how physically exhausted you must be on top of already heightened emotions. I am so sorry. I wish I had some magic words to make it all better, I wish I did. I continually pray for you, your family and your little girl. I hope that soon this is all a distant memory for you.
Well said! Hang in there mama. Still praying. Stay positive.
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| Posted 2/29/16 9:24 PM |
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Ellynrose
LIF Adult
Member since 10/11 1714 total posts
Name:
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Please hug your babies UPDATE page 17
I am always thinking of you and your family. I'm so sorry you have to go through this... I wish there was more I could say or do. I will continue to pray for Lila and for you.
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| Posted 2/29/16 9:40 PM |
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Hofstra26
Love to Bake!
Member since 7/06 27915 total posts
Name:
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Re: Please hug your babies UPDATE page 17
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| Posted 2/29/16 9:40 PM |
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bunnyluck
LIF Adult
Member since 1/14 3196 total posts
Name:
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Please hug your babies UPDATE page 17
So sorry! I know we all don't know each other IRL, but I really wish there was something I could do to help. Please know that we're all thinking of you and Lila.
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| Posted 2/29/16 9:43 PM |
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BsMomma2014
Fly high little one
Member since 6/10 2662 total posts
Name:
nicole
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Re: Please hug your babies UPDATE page 17
Posted by LSP2005
If you are not getting what you think you need ask for the patient advocate to help you. If they promised pt and no one showed up you need to advocate. Do you have one doctor who is hers to check on her at the hospital? Make friends with the nurses. Bring an edible arrangement or cookies. Squeaky wheel gets greased. Be the wheel.
I agree get a patient advocate ASAP, it will help tremendously with getting things done and take a little stress off you as well.
Stay Strong & continued prayers for Lila
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| Posted 3/1/16 7:11 AM |
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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 17
The step down units are always less than the ICU's, we experienced the same with grandma last year. Have you met with social workers yet? Because that's going to be very important in making sure that things are being done that you need/want as well as making sure that you are as prepared as possible for her return home, including having the nursing care you will need and any supplies. Don't be afraid to speak up for yourself and your little one, even if it means screaming at the nurses in full blown "terms of endearment" style. You better believe if I were in your shoes those nurses and PCA's (nursing assistants) would know me by the way my walk sounded.
I am so sorry that your little girl is going through this. ????????
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| Posted 3/1/16 7:18 AM |
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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 17
I'm so sorry. I can't imagine how frustrating it must be to feel that you aren't being given the same level of care.
Keep speaking up for your girl and do whatever you need so you can feel comfortable with her coming home .
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| Posted 3/1/16 10:16 AM |
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Serendipity
Summer!
Member since 4/07 7631 total posts
Name:
PrayingWishingHopingALOT
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Please hug your babies UPDATE page 17
I continue to pray for both babies! I keep checking for updates. I can't Imagine this nightmare
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| Posted 3/1/16 10:37 AM |
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MrsA1012
love my little girl !
Member since 9/10 5777 total posts
Name:
Me
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Please hug your babies UPDATE page 17
Is there anything we could put together ? A go fund me account, a meal train plan so you always have food. Something? I don't know you in real life, but I have a little girl only a little bit older than yours and I cannot imagine what you are going through. If anyone wants to set something up ( if that would be helpful ) let me know.
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| Posted 3/1/16 11:30 AM |
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MrsB12614
LIF Adult
Member since 4/14 1986 total posts
Name:
Mrs
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Re: Please hug your babies UPDATE page 17
Posted by MrsA1012
Is there anything we could put together ? A go fund me account, a meal train plan so you always have food. Something? I don't know you in real life, but I have a little girl only a little bit older than yours and I cannot imagine what you are going through. If anyone wants to set something up ( if that would be helpful ) let me know.
Don't know you or have a child but I always check for updates on your daughter and would be happy to contribute in any way I can if there isn't something already. Please let us know what you need
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| Posted 3/1/16 11:37 AM |
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shaleywhale
LIF Adolescent
Member since 12/09 537 total posts
Name:
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Re: Please hug your babies UPDATE page 17
Posted by MrsB12614
Posted by MrsA1012
Is there anything we could put together ? A go fund me account, a meal train plan so you always have food. Something? I don't know you in real life, but I have a little girl only a little bit older than yours and I cannot imagine what you are going through. If anyone wants to set something up ( if that would be helpful ) let me know.
Don't know you or have a child but I always check for updates on your daughter and would be happy to contribute in any way I can if there isn't something already. Please let us know what you need
Another who doesn't know you but has been following your story. I work right near the hospital, so if I can be assistance... bringing you anything, books, food, anything, whatever... please do let me know. Your entire family is in my thoughts and prayers.
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| Posted 3/1/16 11:44 AM |
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