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USA
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Posted: 9/21/2023 12:54:11 PM EST
[#1]
Donated & shared. God bless you and Eloise
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Posted: 9/21/2023 1:02:05 PM EST
[Last Edit: Norinco982lover]
[#2]
bump! if you can even bump a pinned post.
I've been following your updates in the other thread and will keep praying for your daughter and family. How is your son doing? I remember the long days being home with my older son while my younger son was in NICU with my wife. It was nothing like you all are facing but the unknown was so scary. |
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Posted: 9/21/2023 5:29:57 PM EST
[#3]
Still at the hospital. Surgery went great. Today is the 1st time we have seen her without something on her face.
 Attached FileI will come back in here when i get home tonight to reply to PMs and comments. |
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Posted: 9/21/2023 5:34:26 PM EST
[#4]
I pray as much as I think about it. Really praying you guys get great news and go home soon with her.
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Posted: 9/21/2023 9:47:23 PM EST
[Last Edit: 2000Z3M]
[#5]
Originally Posted By NotIssued: Make sure you tell the power company, Fire and EMS about her issues. Supposedly they have a priority list for certain criteria. Will do, we talked with the critical care team about that. The PD and FD get an "Eloise" bag, as do we. The power company will put us on a high pri restore list. Originally Posted By flyhack72: When our daughter was born, she coded twice, was in the NICU for five weeks. She was intubated for 7+ days. It looked much like your daughter's photo in the NICU bed. The doctors told us that she would never be normal. She would have all of these different conditions and illnesses, developmental delays, etc. While it has been a bumpy road at times, nearly all of the things the doctors anticipated did not develop. She became a case study of Johns Hopkins to help medical professionals better assess newborns like her, and to teach them about approaches to treatment and outcomes. Right off the bat, our daughter, who was told she would never be normal, ended up being just that. She will change the lives of kids who have yet to be born and continues to influence doctors and nurses today and beyond. That is not normal--that is profound. I'm not saying you will wake up one day and everything will be "normal". Your normal will change now. Your wife will struggle with this. She will feel guilt, remorse, doubt--none of which are warranted but it will be her reality. Support her. What you will have is questions, doubt, fear, frustration, longing, etc. That is the worst. You will want to fix everything but you'll find yourself powerless--you can just minimize the potential struggles. Don't internalize. Talk about it. That will help you deal with everything. What I hope you will also have is renewed faith, trust, and a deeper appreciation for life and love. You will be a stronger man for all of this--and a better person because your perspective has now widened and continue to evolve. I'll pray for you, your daughter, your wife, and your family. I am glad to hear your daughter, how is she doing today? I know my wife feels a ton of guilt, she has played the what if game too many times. I tell her every day this is not her fault or mine and we did what she was advised to do. We are not doctors, we have to put trust in them. They need to provide us with the best information so we can make the best call. I think she is slowly understanding that this isn't her fault. I know this isn't her fault. Just the other day my wife asked, what do we do if people think we are making the wrong decisions about Eloise. I told her, the right call is the call we make. If other people think it is the wrong call, they can F off. Today was all about us making the right call, today was the first huge step to be able to bring her home. I spent about 20 years of my life learning to compartmentalize. The first few days, I didn't use those skills and I was a mess. I have started to use them. I think it helps me act more on fact than emotion. It also lets my wife focus 100% on Eloise. I take care of all the other stuff, bills, insurance, family updates, everything else. I think it is also good because a busy mind is a clear mind. When I am busy, I don't think about things, I just act. Originally Posted By cXpSRi3x: Holy shit. I have a child that was diagnosed with leukemia and we've been battling it for over 2 years. As hard as that has been, I can't imagine what you're going through. Prayers for your family. Prayers for your child and family too. Originally Posted By cyclone: The power company I work for will put a special seal on the meter that is white with a red cross and we dont cut them at all...definitely contact them OP and explain the situation. they will work with you Will do, thank you for the info! Originally Posted By Norinco982lover: bump! if you can even bump a pinned post. I've been following your updates in the other thread and will keep praying for your daughter and family. How is your son doing? I remember the long days being home with my older son while my younger son was in NICU with my wife. It was nothing like you all are facing but the unknown was so scary. Oliver is doing good. He has really stepped up to the plate. He helps out around the house more, give Eloise baths and will even read to her. I love seeing him turn into an awesome big brother.  Attached File |
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NE, USA
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Posted: 9/22/2023 1:30:54 PM EST
[#6]
Bump. My prayers are, and will be, with you all.
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Posted: 9/22/2023 9:26:08 PM EST
[#7]
Sending prayers -
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Posted: 9/23/2023 8:23:05 AM EST
[#8]
Continued prayers and bump.
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SC, USA
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Posted: 9/23/2023 8:27:03 PM EST
[#9]
Hit, prayers out. I’ve been struggling with a sick newborn for a while, this was a slug to change my perspective.
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Posted: 9/24/2023 6:08:25 PM EST
[#10]
Quote HistoryOriginally Posted By 2000Z3M: Will do, we talked with the critical care team about that. The PD and FD get an "Eloise" bag, as do we. The power company will put us on a high pri restore list. I am glad to hear your daughter, how is she doing today? I know my wife feels a ton of guilt, she has played the what if game too many times. I tell her every day this is not her fault or mine and we did what she was advised to do. We are not doctors, we have to put trust in them. They need to provide us with the best information so we can make the best call. I think she is slowly understanding that this isn't her fault. I know this isn't her fault. Just the other day my wife asked, what do we do if people think we are making the wrong decisions about Eloise. I told her, the right call is the call we make. If other people think it is the wrong call, they can F off. Today was all about us making the right call, today was the first huge step to be able to bring her home. I spent about 20 years of my life learning to compartmentalize. The first few days, I didn't use those skills and I was a mess. I have started to use them. I think it helps me act more on fact than emotion. It also lets my wife focus 100% on Eloise. I take care of all the other stuff, bills, insurance, family updates, everything else. I think it is also good because a busy mind is a clear mind. When I am busy, I don't think about things, I just act. Prayers for your child and family too. Will do, thank you for the info! Oliver is doing good. He has really stepped up to the plate. He helps out around the house more, give Eloise baths and will even read to her. I love seeing him turn into an awesome big brother. https://www.ar15.com/media/mediaFiles/106637/20230920_195926_jpg-2962076.JPG Quote HistoryOriginally Posted By 2000Z3M: Originally Posted By NotIssued: Make sure you tell the power company, Fire and EMS about her issues. Supposedly they have a priority list for certain criteria. Will do, we talked with the critical care team about that. The PD and FD get an "Eloise" bag, as do we. The power company will put us on a high pri restore list. Originally Posted By flyhack72: When our daughter was born, she coded twice, was in the NICU for five weeks. She was intubated for 7+ days. It looked much like your daughter's photo in the NICU bed. The doctors told us that she would never be normal. She would have all of these different conditions and illnesses, developmental delays, etc. While it has been a bumpy road at times, nearly all of the things the doctors anticipated did not develop. She became a case study of Johns Hopkins to help medical professionals better assess newborns like her, and to teach them about approaches to treatment and outcomes. Right off the bat, our daughter, who was told she would never be normal, ended up being just that. She will change the lives of kids who have yet to be born and continues to influence doctors and nurses today and beyond. That is not normal--that is profound. I'm not saying you will wake up one day and everything will be "normal". Your normal will change now. Your wife will struggle with this. She will feel guilt, remorse, doubt--none of which are warranted but it will be her reality. Support her. What you will have is questions, doubt, fear, frustration, longing, etc. That is the worst. You will want to fix everything but you'll find yourself powerless--you can just minimize the potential struggles. Don't internalize. Talk about it. That will help you deal with everything. What I hope you will also have is renewed faith, trust, and a deeper appreciation for life and love. You will be a stronger man for all of this--and a better person because your perspective has now widened and continue to evolve. I'll pray for you, your daughter, your wife, and your family. I am glad to hear your daughter, how is she doing today? I know my wife feels a ton of guilt, she has played the what if game too many times. I tell her every day this is not her fault or mine and we did what she was advised to do. We are not doctors, we have to put trust in them. They need to provide us with the best information so we can make the best call. I think she is slowly understanding that this isn't her fault. I know this isn't her fault. Just the other day my wife asked, what do we do if people think we are making the wrong decisions about Eloise. I told her, the right call is the call we make. If other people think it is the wrong call, they can F off. Today was all about us making the right call, today was the first huge step to be able to bring her home. I spent about 20 years of my life learning to compartmentalize. The first few days, I didn't use those skills and I was a mess. I have started to use them. I think it helps me act more on fact than emotion. It also lets my wife focus 100% on Eloise. I take care of all the other stuff, bills, insurance, family updates, everything else. I think it is also good because a busy mind is a clear mind. When I am busy, I don't think about things, I just act. Originally Posted By cXpSRi3x: Holy shit. I have a child that was diagnosed with leukemia and we've been battling it for over 2 years. As hard as that has been, I can't imagine what you're going through. Prayers for your family. Prayers for your child and family too. Originally Posted By cyclone: The power company I work for will put a special seal on the meter that is white with a red cross and we dont cut them at all...definitely contact them OP and explain the situation. they will work with you Will do, thank you for the info! Originally Posted By Norinco982lover: bump! if you can even bump a pinned post. I've been following your updates in the other thread and will keep praying for your daughter and family. How is your son doing? I remember the long days being home with my older son while my younger son was in NICU with my wife. It was nothing like you all are facing but the unknown was so scary. Oliver is doing good. He has really stepped up to the plate. He helps out around the house more, give Eloise baths and will even read to her. I love seeing him turn into an awesome big brother. https://www.ar15.com/media/mediaFiles/106637/20230920_195926_jpg-2962076.JPG His life has significantly changed. I hope it is all for the best. Same with you and mom. Our daughter, just like everyone else has their dings. She has to take medicine and do blood work regularly. All in all, she is nearly completely opposite of what the doctors predicted. I'm sure she's an anomaly and that is why she is the subject of a published study that will continue for years and possibly decades. One thing we have learned is that many factors are determined by the parents and family treatment, outside of the medical treatment. Some obstacles can be minimized or overcome due to what the family does when medical staff and therapists are not around. The biggest thing I have learned is that every case and every child is different. We want our kids to be "normal" but there really is no such thing. We typically want that because the parents want to feel solace in knowing everything will be ok. That is ego and love seeping into things. Your kids have you and mom's love and support and I know that you will do everything in your power to keep that constant throughout your life. That is what is most important. You will continue to have questions and sometimes you will have answers and other times you won't. The questions can drive you crazy so find peace in uncertainty and appreciate certain things--like your love. That's much easier said than done. It's a journey. I'll be taking it for the rest of my life. Knowing that I don't know and can accept that helps me have peace. A word of advice is to try and find some "normal" things to do with your son and with mom. Dates, sports, team projects, will help get all of your minds off of things. |
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Posted: 9/24/2023 6:50:55 PM EST
[#11]
Hit.
Bump. |
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Posted: 9/26/2023 1:45:03 AM EST
[#12]
Ttt
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Posted: 9/26/2023 4:19:13 AM EST
[#13]
Bump.
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SC, USA
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Posted: 9/30/2023 8:30:48 PM EST
[#14]
Bump.
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Posted: 10/1/2023 11:43:59 AM EST
[#15]
Just checking in
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Posted: 10/1/2023 11:55:18 AM EST
[#16]
Not too much has changed. They had to stop her feeds on her G tube because it was leaking a lot, but we are on day 4 of 5 with no feeds. She is getting all her nutrients via IV from TPN. She gets 2 bags a day at 1000 dollars each, thank god insurance is covering it.
I had a sit down with the critical care team about setting up the house for her. We might get a ramp to make it easier for us. She is going to work with the state on have them come visit our house to make sure its good to go for her. They make sure it is up to code, and if not they help get it taken care of. While she is still under weight for an at home vent, the docs want to try her on it. She has been sitting on min settings for over a week now. |
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Posted: 10/4/2023 5:02:17 AM EST
[#17]
Dusty in here.
Hit bump. |
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Posted: 10/4/2023 2:05:23 PM EST
[#18]
Hit.
Praying for your lovely daughter Eloise. As a fellow Trisomy family who just got back from the PICU, I'm so sorry you guys are going through all this. |
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GA, USA
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Posted: 10/4/2023 4:48:35 PM EST
[#19]
Best wishes for you and your family in these trying times.
When my niece was a patient at St Jude's our family received good support from Ronald McDonald house in that area. You might be able to benefit from this if there is one local to you. Also my niece's mother had a webpage that she updated daily with information about my niece's condition. She gave the link and passwords to family so they could follow her condition. The benefit to this is that my niece's mother and father were not having to tell each family member the same information over and over. Everyone could stay up to date on her condition without burdening the mother and father to explain it all over and over. I only make these suggestions to help you and your wife. The more resources you utilize the more of your energy you can focus on your daughter and taking care of yourselves as well. Dont forget to take care of yourselves. I work in the medical field and see caregivers often forget to take care of themself. Resting, managing time and stress will keep you an effective care giver for you family. I am sure you are doing everything in your power for your family. I hope my suggestions don't sound critical or pushy. I am just encouraging you to ask for help when you need it and utilize all the resources you might have access to. |
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Posted: 10/6/2023 7:46:56 AM EST
[#20]
Prayers and bump.
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Posted: 10/7/2023 11:33:25 AM EST
[#21]
ttt
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Posted: 10/8/2023 11:31:35 AM EST
[#22]
She has MSSA again, well I dont think it ever went away, i think it was just suppressed. Its in her blood and one kindeny is showing signs of infection. She had a brain ultrasound monday. Liver was clear. NICU is a rollercoaster!!!
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Posted: 10/8/2023 6:17:54 PM EST
[#23]
Quote HistoryOriginally Posted By 2000Z3M: She has MSSA again, well I dont think it ever went away, i think it was just suppressed. Its in her blood and one kindeny is showing signs of infection. She had a brain ultrasound monday. Liver was clear. NICU is a rollercoaster!!! Eloise is in my prayers, OP. |
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GA, USA
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Posted: 10/9/2023 6:28:38 PM EST
[#24]
Prayers for the little angel and your family.
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Posted: 10/10/2023 3:23:38 PM EST
[#25]
Bump, and additional prayers for you little angel.
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Posted: 10/11/2023 12:02:43 AM EST
[#26]
Praying for little Eloise bro.
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Posted: 10/12/2023 3:47:03 PM EST
[#27]
Prayers up for Eloise and you and your family, bro!
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Posted: 10/12/2023 4:32:13 PM EST
[#28]
Huge update. Had a sit down with at home care, awesome org, need to sit down with a few more but it looks like we are getting 24/7 at home care.
Eloise also gets to do a trail on a home ventilator starting the 20th to the 24th. She could be home in as quick as 2 weeks after that, but more likely 4-6 weeks. |
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Posted: 10/12/2023 5:23:00 PM EST
[#29]
Quote HistoryOriginally Posted By 2000Z3M: Huge update. Had a sit down with at home care, awesome org, need to sit down with a few more but it looks like we are getting 24/7 at home care. Eloise also gets to do a trail on a home ventilator starting the 20th to the 24th. She could be home in as quick as 2 weeks after that, but more likely 4-6 weeks. Thanks for the update - and great to see the progress! |
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Posted: 10/12/2023 8:01:09 PM EST
[#30]
After a lot of thinking, 8k+ was a lot to spend on a full home generator. Id rather use yalls gifts for more stuff for Eloise. I picked up a generator today for 992.13. I will also get a battery power pack.
 Attached File |
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Posted: 10/12/2023 11:03:34 PM EST
[#31]
We don't have all that much but I donated what I could. I lost a child when he was about a year old from complications. We're all here for support. God bless you and your family. You are in our prayers.
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Posted: 10/15/2023 8:50:35 PM EST
[#32]
Not sure how I missed this, but I'll shoot you guys a donation this week.
In the meantime, we're going to pray for you all, it's very dusty in here after reading through the thread. My wife lost the only baby we were ever able to conceve, and it was very tough on both of us, so I can't imagine how hard this is. My point is that I'm extremely impressed with those of you that are put in these horrible situations, but all you can do is put one foot in front of the other. As men we are fixers, and when we can't fix things it's tough on us. May God grant you the strength and the wisdom to make the best choices for not only your little girl who is beautiful, but also for you and your wife and son. I'm sorry you're going through this op. |
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Posted: 10/16/2023 8:38:19 PM EST
[#33]
Just donated, best of luck to you all. We also had a child go to NICU, my story doesn't compare...
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USA
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Posted: 10/17/2023 8:22:47 AM EST
[#34]
Still thinking about Eloise and praying for you guys.
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Posted: 10/18/2023 9:41:59 AM EST
[#35]
Hoping for the best for you and your family.
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Posted: 10/20/2023 11:21:37 AM EST
[#36]
Prayers for Eloise.
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Posted: 10/25/2023 7:12:27 AM EST
[#37]
Donated. God bless you and your family.
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LA, USA
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Posted: 10/27/2023 4:21:45 PM EST
[#38]
Need an update on the lil chicken nugget
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Posted: 10/27/2023 8:03:03 PM EST
[#39]
Massive update!!!
Tentative home date of 14 Nov. Still has a few more little steps but she is getting there. |
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MN, USA
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Posted: 10/28/2023 11:02:00 PM EST
[Last Edit: madcap3k]
[#40]
That's great news! Glad to hear she's looking at coming home and is making good progress.
Baby Eloise is beautiful and a fighter. We will keep praying for her and your family. |
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Posted: 11/3/2023 2:17:36 PM EST
[#41]
Hit
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Posted: 11/4/2023 10:37:07 AM EST
[#42]
Eloise's home coming is the 28th. They didnt want her home right before a huge holiday when we are first starting. She has been on an at home ventilator for 24hrs was only put on O2 when she was in a deep sleep, other than that she is on atmosphere
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Posted: 11/4/2023 2:45:59 PM EST
[#43]
My family will be thinking about yours. Good luck.
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Posted: 11/5/2023 1:48:15 PM EST
[#44]
Those photos really hit home for me. My twin daughters were 9 weeks premature and spent 3 and 5 weeks in the NICU...but I was dealing with nowhere near the level of issues you are. 24 years later and your pics came very close to making me cry.
Stay strong, man. |
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Posted: 11/5/2023 9:05:10 PM EST
[#45]
Just now reading about this.
Prayers to you and your family OP. You are doing a great job, and what you’re doing is working. |
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Posted: 11/9/2023 5:32:10 PM EST
[#46]
IM Sent.
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Posted: 11/12/2023 9:19:17 AM EST
[#47]
How is your baby girl Brother?
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Posted: 11/12/2023 9:21:26 AM EST
[#48]
How is your baby girl Brother?
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Posted: 11/16/2023 6:35:05 PM EST
[#49]
How's she doing?
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Posted: 11/17/2023 7:20:23 AM EST
[#50]
Donated and bump.
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