Refusing to Give Up

[iwontgiveup]

So, yesterday my fiance and I had to take a 8 hour round trip to go and check on some complications with our baby girl. What we understood at that point was that baby Lissie didn't have enough fluid and that her kidneys were likely enlarged and that she might have cysts. But nothing terribly damning. Well, we got there and after the ultrasound the doctor informed us that her kidneys were 8-10 times the normal size, that she really had no amniotic fluid at all, and that her lungs had not developed and that at this point, she would not be able to survive once she was born and we should try and enjoy the time we have with her as much as possible. We are refusing to simply believe that this is the best we can hope for. If there's anyone out there who has gone through this, regardless of the outcome, any encouragement and advice you have would be greatly appreciated.

 

[vermeil]

hello, I have no experience with this, just wanted to give you a hug Try and take good care of yourself - sending positive thoughts your little girl`s way

 

[iwontgiveup]

Thank you so much for the kind words. We fully believe baby Lissie will make it through this and that God will take her far enough for the doctors to get her the rest of the way. Thank you again for the kind words and thoughts.

 

[080509]

I just want to say i've no advice but i'm staying positive and i really hope for a positive outcome for you xxxxx

 

[Lady H]

No advice except keep positive thinking, miracles can and do happen. Wishing you and your baby all the best xx

 

[iwontgiveup]

Thank you everyone for the kind words. I'm just staying positive. And yes, miracles happen everyday. Again, thank you for the positivity, guys.

 

[vermeil]

pff if you want positive, our son was given 25% chances of survival. If he did survive he would certainly be heavily handicapped. They offered us paliative care only at his birth, which we refused. We wanted to give him a chance at life. Well... he just turned 3 and he`s perfectly healthy, bright and happy - you can see pics below

 

[Andypanda6570]

Absolutely love and admire you! Never ever give up, miracles definitely do happen. You will be an amazing Mommy. I wish you all the best XOXOOXXO

 

[iwontgiveup]

Thank you for sharing your amazing story, vermeil! It's so easy to get scared and feel hopeless when I'm reading about survival rates and other information on ARPKD. My baby is already such a miracle, it seems ridiculous that she doesn't have a fighting chance. Again, thank you so much everyone for the encouragement and kind words. I feel so blessed that not only do I have a wonderful fiance who is so much a part of this, but also that we live in a day and age where women can share their experiences and gain strength from it.

 

[TMonster]

I am so sorry you are going through this. I am not sure what can be done but I do know that when I was discussing my doctor concerns about having low fluid levels he said it was possible to inject more amniotic fluid into the womb if necessary and told me to drink as much as possible.

I don't know if that helps you any. I wish you the best of luck!

Hugs!

 

[iwontgiveup]

Thank you so much! I was actually wondering about that. I'm not sure if they'd be able to with her kidneys being so large with the ARPKD, but that would definitely be something worth looking into to help develop her lungs. Thank you so much for the advice!

 

[TMonster]

I am not sure where in AR you are and I am not sure if this is an option but have you considered contacting other major childrens hospitals that may be more supportive/have more resources available to you? I know there is a great one in TX. I know the one I am going to in NYC and the one I considered going to out in CA both had really great resources for patients of the childrens hospital who need an extended stay from out of town. They set you up with free/really cheap housing depending on your financial situation and while it may be difficult with work etc. it might be worth it if they think they can give your baby a shot or do more for her than the hospital you are at right now.

Maybe try researching specialists in the field and pediatric nephrologists?

Good luck! Hugs!

 

[iwontgiveup]

Oh wow! I hadn't really thought about that! Thank you so much for the suggestion. Yep, anything at all for my baby girl. Nothing spared!

 

[TMonster]

I just did a quick google search for you and from a very cursory search, it looks like Childrens Hospital of Philadelphia is a major one to consider.

https://www.chop.edu/service/nephrology/kidney-liver-program.html

and

https://www.chop.edu/service/fetal-...ut-our-services/pulmonary-hypoplasia-program/

I would suggest contacting them and soon to see if there is anything they can offer to help you out.

Hugs


Edited to add: https://www.arpkdchf.org/the-childrens-hospital-of-philadelphia-and-quality-of-care/

 

[iwontgiveup]

Checking it out now!

 

[Whitesoxfan41]

I just wanted to offer a bit of hope as well as prayers for you and your little one! My youngest was born 5 weeks early, brain bleed, hydronephrosis (She had surgery at 4 months) severe GERD, epilepsy from the area of brain damage and low tone. She was very developmentally delayed for a couple of years. We did every therapy out there, and she beat every single odd. She's now 14, off of epilepsy meds, plays volleyball, basketball and runs track and cross country. She's my miracle baby! They told us at different times that she would not grow out of the epilepsy, she was a candidate for a few years for brain surgery.
Many positive thoughts and prayers for you!

Below in the purple flowered dress is my Jilly and big sissy Alaina.

https://img.photobucket.com/albums/v104/skeeter30/alaina/558864_10201002428373867_1741053330_n_zps50a3ad20.jpg

 

[Whitesoxfan41]

double post

 

[iwontgiveup]

Oh wow! She definitely overcame some big odds! She is a beautiful young woman and I am so glad for the encouragement!

 

[TMonster]

Have you contacted CHOP? Any updates on the situation?

 

[iwontgiveup]

No I haven't yet. Every time I get online I forget to contact them! Shall do so, now!