Hi everyone... My baby is on dialysis

[Xime_from_Chile]

Hi there...
My name is Ximena (Spanish name). I'm a Chilean woman who just had my first baby last march.
I was 34 weeks pregnant when the doctors decided to interrupt the pregnancy due to some problems with my baby's kidneys. The ultrasounds showed that both of them were collecting urine and seemed very dilated. Unfortunately, the tests they did after his birth showed he had end stage renal disease and nothing could
be done, except for dialysis and a transplant in a couple of years.

I was devastated when they gave me the news. Now I'm feeling better but it's been really hard. I'm not longer with his dad which makes things even harder... He has taken no special interest in Rafael's health, has never done any procedures or come to one of his many doctor's appointments. It doesn't help that I'm a type 1 diabetic and my energy level is quite low. I do have my mom's support though, she's an amazing woman.

Rafael started PD about a month ago. He had some problems with his catheter (the cycler wouldn't drain) but they re-accommodated it and do far, so good. He's growing and gaining weight, and seems to be a happy little boy who just smiles a lot

I'm glad I found this site. I know you will understand when I say that while I'm thankful dialysis exists, because I'm able to be with my little baby and see him grow... I also absolutely HATE it!! I feel totally trapped, because there's no solution to bring Rafael's kidneys back. I feel like my life is over, I'm very angry that I don't get to enjoy my baby the way any new mom should... and then I feel really guilty because it's not about me, but Rafael. I'm also very worried and scared about the future... Will he have any mayor complications? Will he grow normally? I'm just so overwhelmed right now    

Thanks for reading this. I know it will get better, eventually. Just have to live one day at a time.

[cariad]

Hola, Ximena, and bienvenida a IHD! (I love Spanish!!!)

Well, I can certainly see why you would be overwhelmed and scared about what is to come. I genuinely feel for you. Is there anything harder than watching your own child face these issues?

I had a kidney transplant as a child, but I was much older than your little Rafael. I would say that your best bet for him is to get a transplant as soon as possible. Will he have major complications? Hopefully not. It is certainly not a definite that he will. Will he grow normally? He will most likely be shorter than he would have been were his kidneys still functioning, but there may be ways to address this side effect. Other than that, it is imperative that his doctors help you monitor his potassium and phosphorous levels, as I am sure they are doing. PTH levels (parathryroid hormone) will give an indication if his bones are in danger of severe damage.

You have every right to be angry. Don't beat yourself up for being normal! This situation is so unfair to you and your baby.

I am so glad you have found us, because the very best thing you can do for Rafael is to learn everything. Science is moving at quite a pace, and there may well be an implantable, artificial kidney available for your son in the next decade or so. Or maybe there is hope that scientists can grow his kidneys back - they are certainly working on this technology as we speak.

I look forward to getting to know you better. Please keep posting and asking questions whenever they come to mind. We are with you in this battle. 

[Rerun]

Hello Xime and welcome to IHD.  I'm so glad you found us.  Rafael is lucky to have you as a mommy.  It must be very hard to hook your baby up at night and not be able to just snuggle with him like a normal baby.  I'm sorry you have to go through this but when he is older hopefully he will be transplanted.  How is the list in your Country?  Someday we will get kidneys of our own cells.

Yes, just one day at a time.... 

Rerun, Moderator       

[The Noob]

  and  to you and little raphael!

lets just say it. it just sucks. you do it because you have to for your son. you are one wonderful mom!
girlfriend, we are all here for you. 

[MooseMom]

Buenas!  I am so glad you found this site.

I have just one child; he is now 20 years old, but when he was very young, he was diagnosed with autism.  I was diagnosed with an incurable kidney disease, believe me when I say that I do understand the dual terror of worrying about not only about your child's future but also about your own.  It is very scary to think that you may not be around to look after your vulnerable child.

Is your son already on the transplant list?  I would imagine that transplantation as soon as possible would give your son his best chance for a "normal" life.  But even that is not a cure.

You can enjoy your baby just like any other mom; you can watch your baby grow and become a happy little soul.  How you handle his illness will go a long way toward forming his personality and his level of resilience.  From you, he will learn courage and perseverance.  You love your entire baby, not just his kidneys!  Keep coming back to this site when you feel you need support, and we can help you. 

Give your little punkin a big kiss and cuddle from all of us!

[Ang]

 

[Annig83]

 

Bienvenido! Usted ha encontrado un maravilloso grupo de apoyo aquí, y en muchas maneras en que podemos todos se refieren a usted y a su historia!

I can certainly relate to your story in that I had a baby 3 months early, due to my Nephrotic Syndrome.  My BP sored at 7 months and my creatinine went through the roof as well!  They had to take my son immediately after seeing that his growth was restricted. He was born at 1 lb 12 oz.  He was in the NICU for 2 months and the guilt was a lot to deal with, for both me and my boyfriend; although we are still together, we have fought a lot over how to care for him, and my inability to always get up with the baby...now that I am on dialysis things are lots better.  However, I always question if he is doing what he is supposed to be doing.  At 8 months he does things an 8 month old should do, but on other levels, he is still at 5 months, it's confusing and difficult to adjust his schedule for day to day activities.  I can only imagine what it's like having an infant on PD.

You have to remember that you did nothing wrong, and that your sons' health depends on his dialysis right now and of course your love, which is absolutely obvious that you are giving him.  If you didn't feel that bond to your baby, I'm sure you wouldn't be reaching out, and wouldn't have this sense of guilt.  After the birth of my son, I started therapy, for both of us, so that I could be the best Mom I could/can be.  There is no reason that you "can't enjoy your son", yes, it's difficult with all the doctor's appointments, and the constant running around, BUT just having Rafael can remind you of how great of a joy it is, that he simply IS HERE  

My son Carson smiles all the time too, and it always puts a smile on my face.  Just keep talking with his doctors to make sure that he's on track.  Another great site to look at is the March of Dimes.  I've met some very supportive Mom's on there, and there may be some babies on there that have the same issue as Rafael does too.

If you ever need anyone to talk to you have found a great site.  Good luck, and hope to hear from you soon!

http://marchofdimes.com/

[lmunchkin]

Welcome!  Wow, such a Heavy load you are carrying now!  You come here for anything! You have every reason to feel the way that you do! You have a very positive attitude, which will go far with this disease!  Just feed off this site, everybody is here for you and you ask, contribute or vent all you want! That is what IHD is about!
Relax, and take your time! Keep loving that little man with all you got!  Enjoy his preciousness now!  You are a very loving mother and he is lucky to have you in His Corner!

God Bless and keep us posted on his progress!

lmunchkin     

[Xime_from_Chile]

Thank you all for your kind replies and support
I uploaded a pic of us.

Can't remember who said what, but you have some great points.
I would like to do therapy... can't afford the time right now but things should get a bit less hectic once the doctors appointments get more spaced. I definitely want to be the best mom Rafael can have, and part of that means not feeling sorry for him, or me. So I may keep the rantings here

I did some research and know that having ESRD since birth is extremely complicated because the kidneys are so complex and do so many things, but the bright side is that all of this will be normal for him. He's not a candidate for transplant right now because of his weight, he needs to be 10 kilos (22lbs) for that. I don't know how fast the list goes, but infants and kids do get first priority, so I'm hopeful he will get one soon enough to have a less complicated childhood. Doc said he might get one in about a year.

For sure I'll keep reading to learn, because I agree, knowledge is power. Thank you all again, I'll let you know how things go for us. Nos vemos! 

[Epofriend]

Bienvenidos Ximena 
Cualquier pregunta que tengas uno de los miembros dara la respuesta. Aqui tenemos mucha experiencia con la vida con ESRD. Asi que haz tus preguntas. Y de nuevo, bienvenidos a IHD y buenisimos deseos a Rafaelito. Mis dos nietas son bebas tambien.

Epofriend, Moderator

[Poppylicious]

  Ximena and Rafael!

Rafael, you are SO gorgeous ... I want to reach through the monitor and pinch your cheeks!

Ximena, I can't imagine what it must be like to be a mummy to such a vulnerable baby, but he is very blessed to have you in his life.  Feel free to pop back on here and rant about it; we're here to support you in the good times and the bad, and we're certainly not a judgemental lot! 

*huggles*

[The Noob]

beautiful baby and momma!

[jbeany]

Ximena, feel free to rant away on here whenever and however much you want or need to!  We're here to listen and glad to do what we can to help.

jbeany, Moderator

[monrein]

   to IHD.  I'm so sorry that little Raphael is starting his life this way but I am glad that you found this site and hope that it will be helpful with information, support and understanding around ESRD.   

[texasstyle]

I can imagine what you must be going through and how you feel. (***hugs***) I do know that I as a caregiver have learned soooooo much here and it has helped me a great deal. You too will learn. Even just by starting out by learning how the kidney functions will be helpful in understanding things. For example, I never knew the kidneys paly a part in stimulating red blood cell production, or helping with fluids. When you start to learn a little, it helps give you a sense of control in what might seem like an "out of control" situation for you at the moment. You and I are kinda in the same boat. You have a new baby, and well... my husband ats like a baby sometimes lol. beautiful you 2 are by the way!

[TINA HUBB]

Hello Ximena
My name is Tina and we have a lot in common. My daughter, who is now 7, was born in chronic renal failure (due to VATER). We did seek help In-Utero but because I was having twins, our options were limited. My daughter was 13 months when she met her weight requirement and we moved into transplant with my husband giving her his kidney. This surgery went on for 16 hrs and I had no idea what was going on. I later found out that the kidney could not get enough blood flow(due to an abnormal vascular issue) and the transplant did not work. I was heart broken! My daughter was not "fixed" and now my husband was down one kidney. I can assure you that  the 4 hospitals we visited since that time had never seen this happen. All the docs could say is what a tragedy.
My daughter's complex anatomy became an issue for the next 5 yrs. Added to by the fact that she received 9 blood transfusions and could not find a suitable donor. We were told by these same 4 hospitals that we had a 1-2% chance of finding a donor for Kiley that she would not reject due to her VERY high PRA level.
Kiley remained on dialysis until 2 months before her 6th birthday. A donor came foward and changed our lives. Kiley is now growing and healthy and happy. She is receiving therapy to get stronger( due to VATER). You would never know by looking at her that she had such a hard road. I can also tell you that she barely remembers what life was like before her transplant. That's the great thing about kids.
I tell you this story not to scare you because I know Rafael will do GREAT- but to show you that even difficult children, like Kiley, can have a happy ending.
I know this is sooooo scary and I would like to tell you that I can forget about this past 7 years, but I can't. What I can tell you is that all the tears I cried in pain and fright have been replaced with tears of joy. Kiley is now 17 months out of transplant and doing great. We will start her on growth hormones soon so that she make up what she lost in height due to all the years on dialysis. If you have good doctors, they can correct most issues related to these horrible diseases and our children can grow and be a "normal" child and do what everyone else can do.
I wish you all the best with Rafael and you can contact me anytime to talk. I believe all will go perfectly, as most do go great and only listen to my story as one that shows things do turn out well in the end.
I would also like to add that any babies I saw over these years who needed a transplant, did receive one very quickly. If Kiley did not have all the other issues, she would have been transplanted in a matter of months- so we are told. These transplants were ALL a success and I see them at the hospital for transplant clinic. It is great seeing the same families we saw in dialysis, now at better stages of life.
I wish you all the best and may God bless you both.

[Xime_from_Chile]

Hi Tina,
thank you for sharing your story with me. I love happy endings
It helps to hear that Kylie is doing well after her transplant and all the added difficulties. Your daughters are very beautiful and look so happy.
 
Rafael is weighing 7 kilos already, so the ten mark does not seem too far away. But I know the road will be pretty hard. Sadly, I won't be able to give him my kidney because I'm diabetic... I'm not sure how long is the wait on the list but I do know small children and babies are top priority.

One of the problems I'm facing right now is that I feel so tired all the time, sometimes I think I won't be able to do it, you know? I barely have the energy to feed Rafael (it's a battle because he doesn't have any appetite and they removed the ng tube for a while), change him, give him his medicines and connect and disconnect him to the cycler. Everything else (giving him a bath, going for a walk or playing with him) is just overwhelming. That makes me feel like a lousy mother. And I know that in a few years I'll regret not sharing mote time with him... But I simply can't do it right now. Did this ever happen to you?

[Bajanne]

Bienvenidos, Rafael y Ximena!
So sorry that I only just saw this thread.  What a story!  And what a beautiful boy!  You have a lot to go through, but now you have your IHD family with you all the way    Please keep us updated, and let Rafael know that he has muchos tios y muchas tias de todo parte del mundo!  Looking forward to hearing your report on his progress (using the General Discussion area).
 




Bajanne, Moderator

[paris]

Welcome.  Your story brought me to tears.  I cannot imagine what you have been going through.  I think we have all fallen in love with your baby!  And we keep both of you in our prayers.   We will be looking forward to more posts and updates.  We are very glad you joined us.  Again, welcome to IHD.   





paris, Moderator

[TINA HUBB]

Hi Ximena
You are not a bad mother! You are going through the most horrible thing a mother can go through( a sick child) while trying to take care of your own medical needs as well. There are healthy mothers out there that would have just walked away from this situation. You didn't do that because you love your son. You are a wonderful Mom. Rafael will be transplanted quickly and there will be so much to enjoy with him.
Kiley was on PD for @ 3 yrs and had to start Hemo after too many surgeries to return to PD. Because I had twins, my husband took care of the PD for the 10 hrs every night while I took care of Kimmy. My hushand is a strong, healthy man and he was worn out during those years. It was hard for him to sleep because he was so afraid maybe he would not hear the alarm etc. After we started hemodialysis, It was my turn to take over the care for Kiley while he went to work. We live in NJ and we traveled to DE, 3x a week( 2 hr drive each way) for her treatment. During these @ 3 yrs, I tried to keep Kiley happy while hooked to this horrible machine and keep her sisiter occupied at the same time- and it wasn't easy. Then I listened to them say they want to be home for that 2 hr ride home. We left at 6AM and did not get home until @ 2 PM. Some days I fought to keep my eyes opened on that drive home. Some days it was so hard to get out of bed because I was so tired (not comparing to your illness). I never wanted to complain ( I hope I don't sound like I'm complaining now, just trying to be honest) because I never wanted Kiley to feel like a burden to us. I just kept telling myself that I was just happy that she made it and was here to take care of. I also kept telling myself that there was a light at the end of the tunnel. I relied on my faith that we would ALL make it through this ok. I will share with you that I felt extremely guilty that I did not have the time for Kimmy that I should have. It just seemed that Kiley's needs were a priority. Now at 7, Kimmy seems to have some issues with that so she has been working with a counselor.
Things will get much easier after transplant for all of you and it doesn't sound like you are too far from that! I truly do know how hard this is but you must remember to take care of yourself through it all. Rafael needs you to be as healthy as you can be.
I am always here for you and feel free to email me at totalbliss0902@optonline.net so that you may talk freely. You have many people here that are praying for you and that are here to listen when you need an ear. Stay strong!