Baby Joey

[PDBrahm]

Hi. My name is Pamela and I'm new to the site. My husband is in the military and we live in Alaska for the time being. My family is in Minnesota, his is in Texas.

My husband and I started trying to conceive in April 07. In Dec 07 we found out I have PCOS (poly cystic ovary syndrome). They put me on fertility drugs and on Oct 12 08 I was FINALLY pregnant! The pregnancy has been VERY rough, I can't keep much food down. On Dec 31 08 I went home to visit mom and dad and go to the baby shower my aunts had planned. On Feb 3 09, 11 days before my baby shower, during the routine 20 week ultrasound they found out our baby has no kidneys or bladder; bilateral renal agenesis. Baby's lungs will not develop because they need amniotic fluid that the kidneys take over making at about 16 weeks. Distraught and thousands of miles from my husband I had been told the worst possible news of my life. Our baby will not survive, 100% fatal diagnosis. I had to call my husband and tell him over the phone that our baby will die.

We had to pay mostly out of pocket to fly him to MN and get a second opinion. On Feb 5 09 a second perinatologist concluded the same, renal agenesis.

I made the decision to abort the pregnancy, but it didn't happen. For 2 weeks we fought with the insurance company, who would not pay for an induction of labor. I had no choice but to go back to Alaska and continue the pregnancy.

On April 8 09 a woman in Anchorage gave us a free ultrasound so we could spend some time with our baby and have some video. No one was able to find the sex of the baby, until we saw her. The baby is a girl!

After I started feeling the baby move I got really attached to her. She likes to listen to the song "baby mine" from Dumbo, and evanescence's song "hello". She has a definate personality and is really fiesty. I love having her with me but it's tearing me apart a little each day to know she's growing only to die shortly after birth from not being able to breathe.

We have named her Joey. My mom thought I was a boy and named me Joey before I was born, because she felt like a kangaroo. So, I picked Joey because she will always be my kangaroo baby, even after she's taken from us.

I already love her so much and cannot wait to hold her, but at the same time I don't want to be able to hold her because that means her life is coming to an end.

They are inducing labor around the beginning of June. So I guess we'll see what other twists are thrown at us.:(

[tstracener]

Hi Pamela. I cannot tell you how sorry I am for this diagnosis. My son, Samuel, had a variation of potter's syndrome. We found out at 18 weeks that he would most likely not survive and they were right. He did live long enough to meet us and his big brother. He lived for an hour and 28 minutes and looked perfect. You will be so glad to meet Joey, what a cute name! Enjoy all your time with her. One thing I did was get a heartbeat monitor so I could listen to his little heart beat anytime I wanted. Praying for you, your husband, and your little girl.

[momma to 2+ an angel]

Pamela,

I am so sorry for you, your husband, and all of your family.


My son passed away after living for 2 hours and 7 minutes. He had Posterior Urethral Valves... a blockage which did not allow urine to pass through and turn into his amniotic fluid. It created multiple cysts on his kidneys.

It is so sad. We tried for 18 mos. and finally fell pregnant only to lose him after holding him in my body for 6 mos. I am so sorry.

If you ever want to chat, please feel free to let me know - I could even call you or give you my email address, if you want. Whatever works for you.

I am so sorry, Pam

Jenn

[Abigailsmommy]

Pamela, I am so sorry about this news of your little baby Joey. Just know we are thinking of you and praying for you and your family.

Jenni

[amburke2]

Pamela,
I'm so sorry to hear about little Joey's diagnosis. We received a similar one at 15 weeks with our son Timothy (multi-cystic kidney dysplasia; his kidneys didn't form properly and so he didn't have amniotic fluid, either). We prepared for his birth and death at the same time, but we're glad that I carried him until birth so that we could have him longer and interact with him more (he also responded to music and his daddy talking to him). He lived for 38 minutes after birth.

As unsettling as it can be that others have been in the same situation you are in, please know that you are not alone and we are thinking of your family.

[macsquad33]

Pamela,

My son Murray was born on October 8, 2008 with PUV (same as Jenn's baby Cameron) and died 18 hours later. I know what those days and weeks are like, waiting to get to the point of induction to not know what obstacles you will have to overcome next. We found out at 20 weeks, tried in utero surgery (that worked for 7 weeks) and until I gave birth via c-section at 34 weeks a one day, I was just like you.

I am glad you have found this forum. This has been my lifeline that I wish I would have found before I had Murray. Although none of us want to be friends (because of the way we met) we are - and we are forever friends. We are here for you whenever and however. You just let us know. I will add you to my prayers list. Take care and enjoy each moment you have with that sweet baby girl Joey. (Love her name by the way!!)

[Mackenzie's Mommy]

Pamela, I am so sorry to hear about your precious Joey. You will be in my familys thoughts and prayers double! We pray every night for our service men and women. My husbands cousin is in Iraq but he is stationed in Alaska as well. I hope all of us here can bring you some comfort in the weeks to come! Again, I am so so sorry!

[Marcus Momma]

i am so sorry. Take lots of pictures of her with everyone u wanna share her with. This will be your window to her these pics and u will treasure them and always want more. I pray that ur time with her will filled with happiness as well.

[Benjamin's Mommy]

This breaks my heart. Create as many memories of her as you can - I wish I had more memories of my little one while I was still pregnant with him; while he was still alive. Please please please keep us posted. I know it is hard, but writing on this forum really helps a lot. We understand your pain and are willing to do anything at all to help. I only wish we could all be there in person to lend you our shoulders to cry on. You and your family are in my thoughts and prayers. Take care of yourself.

[PDBrahm]

Isn't it strange how the doctors tell you it's such a low percentage of babies/pregnancies that are taken from us due to kidney problems, yet most of the posts I've read here so far have to do with kidney failure or missing kidneys entirely...Am I just being bias and only seeing things that pertain to Joey's diagnosis, or did someone else notice this as well?

[mommyofalana]

Pamela I am so sorry. I will be praying for you.

[jordynhope]

I'm sooooo sorry to hear of your baby Joey's condition. It's so unfair! My little girl lived for 25 hours but I was only able to spend about 3.5 hours holding her and loving her and those were the most WONDERFUL 3.5 hours of my life...by a long shot! So I hope it brings you some comfort to know that you have something amazing to look forward to in delivery of your little Joey but yes, it is still so heartwrenching at the same time.

I'll be praying for you and your family. I hope you are able to take advantage of every second God gives you with your little Joey...and even after He takes her away. As soon as my Jordyn's heart stopped beating, I handed her to my husband because I didn't think I could handle it...now I wish I would have hung on just a little bit longer, one more squeeze and one more kiss!

I hope you find some comfort here...again, I'll be praying for you guys!
Crystal

[motherofthree]

Pamela,

I am so very sorry to hear that your Joey cannot stay with you for as long as you had planned. I know all too well how you feel. On October 4, 2007, at a routine ultrasound (I was just over 25 weeks), we found out that our precious second child had bilateral renal agenesis - was missing both kidneys and her bladder. We did not know then our baby was a girl - that we would be surprised with after her birth. We decided to stick with her, and with the pregnancy. I was faced with a strange mix of feeling blessed and cursed as the pregnancy continued, but after the first few days of shock, I resigned myself to making the most of what time we had with our baby.

The next few months sometimes felt like I was in my own special brand of purgatory...torn between wanting to hold my sweetheart, and never wanting that day to arrive because it would mean her inevitable demise.

We ended up having two amazingly beautiful hours with our sweet Kavya before she passed in my arms on her birthday, December 26, 2007. I count myself blessed to have had her with me; she has changed me in more ways than I could ever explain. While the days after her death were excrutiating - I was completely shattered, I can never regret her life or the beautiful time we had with her.

I love your special name for your sweetheart. it is so special and personal. Please feel free to PM me if you have any questions. We did a special birth plan and made many arrangements for her birth and how we wanted to handle things. I can share more about my experience with you, too.

And about your question...I also found it odd the high number of cases of renal agenesis or Potter's Syndrome I have come across or heard of - especially on this site (especially considering that I had never heard of such a thing before). However, I do think that because of the nature of NILMDTS and the service they provide, and because mothers like us have advance notice to accustom ourselves to our loss and plan for it, perhaps we have a higher representation, statistically, on this forum.

You have my support. Anything I can do to help you please let me know...this forum is a wonderful place to come for advice, support, a sounding board, to vent - whatever you need. Once again, I'm so sorry...but I am glad that you have some extra time with your angel.

If you would like to get to know my Kavya, here are a couple of links - first to the video I made for her for her first birthday. The second is a link to where I posted some of her pics on this forum.

http://www.viddler.com/explore/jenniferbrown/videos/1/

http://www.nowisleep.com/showthread.php?t=4119

Please let me know if there is anything I can do...

[Stephie84]

I am so sorry to hear this story. I am currently carrying to term. My son has kidneys but they have failed and the drs. say they are hypoplastic multi cystic and his survival rate is at 73% fatal. I know how hard it is to go day in and day out with this in the back of your mind, but you are doing a wonderful thing for baby Joey and she will always love you. I am also military my husband is in the AF we're stationed in OKC and we don't have family very close. Doesn't that make it 10x's harder??? You can look at Vayden's blog and I'm here to talk whenever.

http://vaydenjamesstewart.blogspot.com/

[Stephie84]

Also we probably have the same or close to due date. I am due June 27th but i'm schedule to be induced on June 5th. I will be praying for you.

[Darby]

Pamela,

I am so happy that you came here and found us here. My daughter also had a variation of Potter's Syndrome. I am so sorry you had to recieve this horrible news. I remember those days so very well. I got to spend a little under 3 hours with my daughter before she passed. Let me know if you need anything and dont be afraid to post anything. You came to the right place although I hate seeing new members. You and your family will be in my prayers.

[Austin's Momma]

Oh Joey, I'm so very sorry you're heart is breaking. You've been through so much and I know you must be overwhelmed with all the doctors and insurance issues, on top of dealing with news about your baby no one ever wants to hear. My son was not able to survive because his lungs were not developed enough---It's just so frustrating!!!! I think you're doing everything you can for your little kangaroo...cherishing the time you have with her. She'll always be able to feel your love for her. She wants you to take care of yourself, so take it easy. You and your family are in my thoughts ~Sarah

[PDBrahm]

I just want to say thank you to all of you for replying. It brings tears to my eyes knowing that other people have had to go through similar situations. I really enjoy reading your posts and don't feel so alone anymore. I'm scared to death of what is happening to my sweet little girl, and just talking with other people who understand how I feel and know where my emotions are coming from really helps.

I've been really stressed and busy lately but I definately want to get in touch with anyone who is willing to email and things. I need a venting buddy! Thank you all for your prayers and support.

[amburke2]

I'm scared to death of what is happening to my sweet little girl, and just talking with other people who understand how I feel and know where my emotions are coming from really helps.

Pamela,
I'm not sure if you mean what's happening to Joey now or what will happen when she's born, but I figured that Timothy wasn't in much pain in utero. After all, he didn't know he was supposed to have amniotic fluid - that's just the way it always was for him. I found the thought comforting that even as we struggled to prepare for his birth and death, he was pleasantly oblivious to all that stress we were feeling.

I'm thinking of you.

[LaylasMama27]

Pamela,

I am sorry to hear about your sweet Joey but it sounds like are enjoying the time you have with her in you still. We found out about a month before Layla was born something was wrong and that was when I really really started to enjoy having her with me all the time. They are the safest when they are in utero and we as their mommies are the ones that get to protect them from this harsh cruel world.

If you need to vent or email or whatever you are more than welcome to email me. blcampbell27@yahoo.com

Our stories are a little different but our pain will always be the same.

Take care of yourself and give sweet Joey a "kiss". *hugs*

[MrsDisel]

I'm so sorry to hear about your sweet joey.
I recently lost my son due to Potter's SYndrome. If you ever want to talk, feel free to email me anytime. You can also read about our story, the link is in my siggy.

leeanne049@hotmail.com

[PDBrahm]

Jpey Makayla Brahm.

Born 5/26/2009 11:30 PM
Passed 5/27/2009 12:50 PM

We had a very quick hour and 20 minutes with our sweet baby. I went into the hospital on 5/23/09 for bleeding, apparently I had a placental abruption. I had so much bleeding they decided to induce labor that evening. Most of the labor was filled with happy anxious feelings of joy. I wish I could have switched places with her. She is very gorgeous and precious. Looks just like her momma. Even her second toe is longer than the big toe, just like mommy. She is absolutely perfect. i could not ask for a better daughter. Her life was filled with pictures and kisses. Her passing was very graceful, she didn't seem to be in any pain. I miss holding her sweet head in my hands and smelling her. She has soft hair that was long enough to curl, i miss rubbing my cheek on her head. It was very sad to see her daddy cry and be in so much pain

[Stephie84]

Pam I am so sorry for your loss. Remember we said that Joey and Vayden could be best buddies, they are only 3 days apart and the day you went into the hospital was the same day I had Vayden. What a wonderful blessing to get that 1 hr and 20 min with and I got the pics you're so right she's gorgeous

[Benjamin's Mommy]

Pam, I was so hoping and praying for a miracle for both you and Stephanie. I guess the miracle is that they brought you to together and that they have a heavenly friend in each other. Take care. Still praying for you and Joey and your family.

[Darby]

Joey is up there with all of the others now. My heart goes out to you and your family at this time. If you would like to I would love to hear more about your labor story and Joey's personality. it helped me a lt to share everything, well almost everything. I am so glad you got to spend the short time with Joey, sometimes that is more than enough. HUGS to you. You and your family are in my prayers.

p.s. I cant wait to see pictures!

[PJBAC]

So very sorry for your loss....my prayers are with you.

[MrsDisel]

I'm sorry for your loss.....I know that there aren't any words to take away this pain that you are feeling right now, just know that we all feel your pain and are here to support you! (((HUGS)))

[Delekatala]

I am so sorry for your loss. I am glad to hear she was painfree. I am sure there was nothing better for her than to spend those moments with mommy and daddy.

[Abigailsmommy]

I am so sorry about baby Joey but I am glad you got to spend some time with her. She sounds perfect. I also had a placental abruption but mine caused our baby girl Abbi to be stillborn at 39 weeks. I know it does not make it any easier but cherish that brief time you had with her and know you are never alone. We are all here for you


Prayers and hugs
Jenni