# I'm afraid of losing my baby



## eilonwy (Apr 3, 2003)

I'm not sure if this belongs here or not, but I'm kind of hesitant to post anywhere else and I really need to talk to someone. If it belongs somewhere else, please let me know. I've never visited this forum before, so I'm not sure what's appropriate here.

I had a little girl 2 weeks ago and it looks like her kidneys might be failing. I'm absolutely terrified, I don't know what to do or think or anything. We don't know exactly what's going on right now, only that something is wrong. She's had two ultrasounds, and had blood drawn three times and every time it seems more urgent that we go back but we still don't know anything.

Sometimes I just feel really lost, when I think about it I feel like I'm being stabbed in the heart. Other times I deal with it by completely ignoring it and thinking about much smaller issues like changing diapers or getting rid of the thrush we have. Sometimes I feel like I'm in a parallel universe, like I've got the wrong "Rivkah" and mine is fine and healthy somewhere, nursing with her big brother and getting ready to grow into a beautiful, healthy little girl.

Most of the time, I just feel confused. I don't know a lot about congenital kidney defects, and I can't find information online that corresponds with her symptoms. I'm the kind of person who needs information to feel comfortable, and I think that may be the worst part of this whole situation for me-- just not knowing what is really going on leaves me in some kind of limbo, I can't move on until I know for sure.

I don't feel like I caused this through any action or inaction of mine during the pregnancy... I suppose that's a good thing. But part of me wonders, what if I did? And will this happen to us again, was it a fluke that her brother was (is) so healthy?


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## weetzie (May 29, 2003)

I cannot imagine.

If you are looking for information, can you call a library? Or the doctors office?

I wish I could offer you more than a hug. The wonderful ladies here should have more wisdom than I do


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## shannon0218 (Oct 10, 2003)

I"m so sorry Rynna, I can't imagine what you're going through right now. I do know that kidney disorders are not always easy to figure out.
I will send healing thoughts to your little one


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## SamuraiEarthMama (Dec 3, 2002)

rynna, keeping you and your precious baby in our thoughts. please let us know what's going on and how you are doing...

one of the hardest things about parenting is sometimes not ever having an answer to a question that seems so very important... why a baby dies, or gets sick... could we have prevented anything? you can't beat yourself up second-guessing your decisions. just rest assured and be comforted by the fact that you are making the best decisions you can right now, with the resources you have on hand.

i wish i could say everything is going to be fine, but i can't. what i can say is that what needs to happen will happen, and that you are strong and wise enough to handle it, whatever it is. you are the perfect mama for this baby, and that's why she came to you. you WILL do the right things, you have already done so many things right. be confident and love that baby with all your heart, and know you have friends and willing supporters here at MDC and among your friends and family... let us know what you need, this isn't a time to be shy!

warmest wishes to you, wonderful mama. stay in touch!

katje


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## blessed2bamommie (Feb 3, 2003)

I'm praying for healing for your baby, Rhynna. and for comfort for your family.


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## Kerrie (Jul 23, 2003)

What a beautiful baby. I don't have any words of wisdom just wanted to offer my







s and thoughts.


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## StillForest (Nov 27, 2001)

Dear Rynna,

I'm so sorry to hear that you're going through this---but glad that you're reaching out for support. I want to send you, Rivkah and your family big hugs














. I hope that you're getting good support and solid medical advice. I hope that you get a diagnosis soon. It's so difficult to know how to handle the unknown. Please be very gentle with yourself. You've done the best you could at each step....just take it a step/day at a time.

You will all be in my thoughts. Please keep us updated! Best wishes to you.


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## lilgsmommy (Jun 21, 2004)

You and your whole family are in my thoughts and prayers! I know how hard it is be sitting around getting blood drawn, seeing drs, and getting other tests done, and not knowing what is to come of it all yet. If you ever need to talk feel free to pm me. I am not going through the exact same thing as you, but pretty dang close, and wouldnt mind sharing tears with you!


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## IdentityCrisisMama (May 12, 2003)

Please let us know. Hugs, mama. Your family will be in my thoughts.


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## kimberlylibby (Dec 28, 2003)

I'm praying for you Rynna.

I can't even imagine what this must feel like to you







s


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## bubbles (Jul 26, 2002)

I understand your need for information. Are there any medical schools or hospitals that specialize in that? When my dh had an unusual and serious medical problem I found some information from medical schools and hospitals that specialized in the problem. I found that they offered more information on the treatment. I know you don't know the specific problem, but maybe looking for kidney treatment programs? In my case, the information I found reassured me that we were getting the right treatment, but I had actually set out to get more info and to figure out if I needed to find other doctors or hospitals. I know you have a lot on your mind, but I find that in the medical world you have to do a lot of your own footwork and the squeaky wheel gets the greaseI am not completely against the mainstream medical world, but have found that you really have to find information and push for what you need and want. Have friends and family help and try to find out who can best address your needs.
You are in my thoughts. I can't imagine your pain, but do know that it is a very difficult time.


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## eclipse (Mar 13, 2003)

i'm sorry rynna. i'll be thinking of you.


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## Katana (Nov 16, 2002)

I'm sorry you're facing this. You're in my thoughts and prayers. She's beautiful.









Some hospitals have medical libraries right inside them.

Are you near any fairly good sized hospitals, or near any children's hospitals? If you are, call the hospital administrator, or whoever deals with public requests and ask if it's possible to get information about your daughter's condition.

See if they can loan you some books, or get you some kind of information.

If that doesn't work, John Hopkins hospital (I believe it's in Maryland??) is supposed to have information on everything you ever wanted to know about. I would call there and see what they could do as well, if nothing else works.

Wishing you strength and peace.


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## *Erin* (Mar 18, 2002)

oh, mama. i'm so sorry your sweet little girl is going thru this, i can't imagine how you're feeling as her mama. i'm sending you love and strength, and i will keep you both close to my heart. i hope you can find more information on what may be going on with her.
edited to add
pm me if you like
lovelovelove


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## applejuice (Oct 8, 2002)

Dear eilowny:








s

I do know that congenital kidney problems are diagnosed at birth by seeing that the baby's ears are low on its head - why? - because the ears and kidneys develop at the same point in time in pregnancy, and if something happened at that point in time, then both are affect - it is just that one is on the outside and the other is on the inside and one reveals the other.

I hope everything goes well with your little Rivkah. I







: that everything is fine - keep nursing her. She was not a preemie and she has YOU! She will be fine.


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## behr (Dec 10, 2001)

Dear eilonwy,
this must be so very scary. I don't know what to tell you other than that I'll be thinking of you and Rivkah, sending a lot of good energy your way.

Take care!


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## eilonwy (Apr 3, 2003)

That's really interesting about the ears; Rivkah's ears are a little bit low (but not so low that it's really noticeable) but they are funny shaped. There's an extra bit of skin that's kind of odd, and they're seriously pointy (like a hobbit). We (Mike and I) noticed her ears right away when we were cataloging her features, because they're not like mine or his or anyone's in our families.

I went with her for her newborn hearing test, and her left ear took about 5 times longer than her right to finish; the nurse said that she probably had some fluid in it from the birth, and that it's fairly common for one to take longer although Rivkah's left ear took a bit longer than usual. I suppose that would make sense, since it's her left kidney that's super-small and malformed.

In my family, it's very common for the children (especially boys) to have frequent, recurrent ear infections. We have very small eustachain tubes, and my brother, sister, nephew and niece all needed tubes in their ears to help fluid to drain normally. Eli has only had a few ear infections, and I attribute that to the length of time he spent (is spending) nursing. The babies in my family who nurse the longest have the fewest ear infections, and the less time they nurse the earlier and more often and more severe the ear infections are. I never knew that there was a connection between ears and kidneys, I'll have to look into that a bit more.


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## Mamm2 (Apr 19, 2004)

rynna you are in our prayers


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## ZoraFinn (May 21, 2004)

Dear eilonwy,

I wanted to post because my little sister went through something similar. She was born a completely healthy looking little baby but when she was just a week old or so, she developed a high fever and was very sensitive to the touch and did nothing but cry. My mother took her to the doctor and they quickly found out through ultrasound that her kidneys were badly malformed. The tubes (sorry, forget the exact terminology) flowed back into the kidneys instead of the bladder and one of the kidneys had split into two parts. There were a lot of things wrong with her kidneys and it was considered an emergency to have an operation on her. She had her first operation as a newborn and another at about 4 months of age and they were both a success. They reconstructed everything. As a follow-up to the operations my sister had to have her urine tested for signs of bladder or kidney infections for about a year. This was simple and could be done at home with little test strips. I recall my sister having maybe one or two infections but that was it. After a while the urine monitoring was ended and she has grown and developed just like any other girl. She is now 10 and very healthy, absolutely nothing special or different about her health or development. Just a barely noticeable scar in her back where she was operated on.

As far as the ears go, though, we have never noticed anything unusual about my sister's ears. My mother's own theory is that because she was exposed to some fairly strong chemicals at around week 12 or so in her pregnancy, the fetus was affected. My mother also had bleeding around that time. The doctor predicted she would miscarry and put her on bedrest. The rest of the pregnancy went fine.

Good luck with everything. It is good that your daughter's problem has been noticed and she is in the care of professionals, although the exact cause of the problem isn't clear yet. I know it makes you worry like crazy and your fears and reactions are justified. But be hopeful. My sister's problem was pretty bad and everything turned out great. I hope they find out quickly what your dd's situation is and then you can have it dealt with effectively and soon. She might need an operation and it will be tough, but chances are everything wll turn out fine your dd will be normal and healthy after that. I am sorry you have to go through this, but we are all thinking about you and wishing you strength during this time. Congratulations on your beautiful new baby and take care.


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## applejuice (Oct 8, 2002)

I hope you and Rivkah are fine Eilowny.









I offered mischebarachs for your little girl at minyan this morning...hope she is doing fine today and everyday and always...









She can live a full and healthy life with small kidneys....I know two such people in my circle of friends.


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## JessicaS (Nov 18, 2001)

I will be praying for Rivkah, you and your family very hard.

Plese keep us updated


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## Rainbow (Nov 19, 2001)

I'll be thinking about your little girl, I saw the pictures of your family and both your children are so adorable.

Are you going to a childrens hospital? If not I would really highly reccomend taking the trek- if possible. We went through some medical issues with my eldest and childrens is just incredible. Especially in comparison to a standard hospital.

It sounds like your family could use some good thoughts and positive energy. Do you have enough support locally?


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## Breathless Wonder (Jan 25, 2004)

I'll be thinking of you both.


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## Ms. Mom (Nov 18, 2001)

Rynna, please feel free to talk all you need to here









It sounds like you're searching for the right answers. I wish I had them for you. But, I will offer you my prayers. I will keep you and your family close in my thoughts.


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## eilonwy (Apr 3, 2003)

Thank you all for your support.

Rivkah is about to have blood drawn for the fourth time, only this time it won't be a heelstick. The nurse on the phone called it something specific, only I must have blocked it out because I only remember having a feeling of dread, and thinking that this was not something I wanted to watch but at the same time I couldn't leave Rivkah alone.







What I do remember is that I'll have to go to the lab to have it done.

We're not going to a children's hospital, but the lab is at Women & Babies (the hospital where Rivkah was born). I'm only hoping it doesn't necessitate us going to the NICU. They have a very nice NICU, as those things go, but I was really hoping never to see the inside of it again. *sigh* I'm not sure where the nearest children's hospital is, to tell the truth.


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## tea olive (Apr 15, 2002)

rynna, i was already wondering about you and here you are going through a difficult time. i'm sending healing vibes for you and rivkah and your family. you are doing the best you can, you have been doing the best you can, and it is enough that you are the person you are, to be your rivkah's mamma in dealing with this.

my love and strength to you,
casina


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## Brayg (Jun 18, 2003)

Rynna! You, Rivkah, and your family will be in my prayers. Please keep us updated.


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## XmasEve (Jun 18, 2002)

from me and I'm sure








from everyone in the Nov/December 2002 thread


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## crazy_eights (Nov 22, 2001)

((((((rynna & rivka))))))

FWIW - the NICU nurses are usually WAY better at blood draws on infants than the lab.


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## pamelamama (Dec 12, 2002)

sending love


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## bakeria (Jan 10, 2004)

Rynna,

I second casina and brayg and well, everybody so far.

My thoughts are with you. Try to listen and breathe, maybe sometimes even at the same time.









You are stronger than you think.

Best,

Maria


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## Mona (May 22, 2003)

mama- sending you light and love......









blessings and







s,
lisa


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## EFmom (Mar 16, 2002)

Oh, Rynna, positive thoughts and














for you and the babe.


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## *solsticemama* (Feb 8, 2003)

she's lovely

she's beautiful

sending a breath of peace your way, mama


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## Peppamint (Oct 19, 2002)

I just wanted to send







your way- I'll be







: for lil Rivkah and for mom, dad and big bro too.


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## SpiralChrissy (Apr 5, 2004)

Hang on darlin'. I know it's a hard, hard time for you and your family. I'll be sending you some positive energy.
My DS was born with 2 holes in his heart and I was scared to death. He had surgery and everything. And he's a fine, happy, amazing little 11month old. Take good care of yourself and keep writing!


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## majazama (Aug 2, 2003)

I second the group hug from us nov/dec 02 mamas :


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## eilonwy (Apr 3, 2003)

Well, we had more blood drawn and Rivkah screamed bloody murder and wouldn't nurse until the bandaid was on her and she was back in my arms (I tried the whole time.) I talked to her doctor again today and he said that if the results of this test come back better than the last then we won't have to do anything until her ultrasound at the end of the month, and that there's probably nothing to be concerned about. Now I'm caught between feeling a ton of relief and a bit of tension at potentially having her blood drawn yet again.

Today my mother asked me if I intend to VBAC #3. I said "Hell yeah!" and then went on a rant about having a healthy normal pregnancy, labor, delivery and baby. It's really getting to me, the unfairness of it all. And I suppose I haven't had to deal with any "real" tragedies; I have two children who are both growing, beautiful little people and that's a lot more than some people have. Still, I feel like I'm being shorted somehow. I suppose it's because noone else I know irl has had to deal with anything more complicated than shoulder dystocia (my niece got stuck for one contraction before she was born) when it comes to their babies. I've been feeling really angry about it over the past few days.







It's totally counterproductive, I guess. I just can't stop being ticked off.














:


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## punkprincessmama (Jan 2, 2004)

rynna, more







from the nov/dec 2002 group. keep us updated.

thinking of you and your family,
punkprincessmama


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## tea olive (Apr 15, 2002)

rynna,
going through welcoming a second child and recovering from birth is a tough and messy time without what you are dealing with specifically with the blood tests. for me tough times means living from minute to minute and working to feel thankful for the special moments and accepting all the help i can stand. remember to take care of your body. you have every right to feel angry though when you are done with it then you can forgive and heal. and you may need some sleep (there's an understatement i'm sure) which is directly related to coping energy.

i'm sorry your mother's remark was so inappropriate. today i saw a mother who's teenage son died suddenly a month ago. her aunt called her today and asked her if she was over it yet! of course what she meant was, are you feeling better, but really! some people just have no idea what they are saying. maybe i'm doing it too!


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## lilyka (Nov 20, 2001)

Oh honey, I am so sorry you are having to deal with this. I have nothing but







and prayers to offer for your family. I know not having information is killing you.

Try not to worry about the blood draws. Ava had 12 heel pokes, 10 vein draws (most of the misses







- but at least everyone who missed walked away and refused to hurt the baby again. they were all rather cute about it.) and they were going for an artierial draw when we decided that it just wasn't worth it. My oldest had blood drawn every four hours. They both got over it and are fine. And even if you do end up back in the wretched NICU (I can totally relate to never wanting to step foot in one again regardless of how nice it is) at least this time you will be prepared. You will be able to see it coming and you will be able to prepare. You can do this and Eli will adapt and be OK and you guys wil all get through this. in the mean time I will be praying for good blood work, high functioning kidneys, general good health, and right along side all of that: peace. Peace for all of you.


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## Ms. Mom (Nov 18, 2001)

You have a lot on your plate right now. You had one healthy perfect baby why would you expect anything less of this baby? You're feeling shocked and scared that this is happening.

It's ok, take the time you need to move through this. Things do sound good from the last results - I'm keeping you all in my heart right now


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## BinahYeteirah (Oct 15, 2002)

bs"d

I am sending a bracha that little Rivkah should _be well_ .

(((((((Rynna)))))))


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## HaveWool~Will Felt (Apr 26, 2004)

love to you mama...


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## applejuice (Oct 8, 2002)

I hope life is better for you.

Good life and good health to both of you.


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## captain optimism (Jan 2, 2003)

It's okay to be angry.

Doctors can do a lot for kidneys, she has a good chance to be healthy for the rest of her life. I'm also offering prayers for her recovery.


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## eilonwy (Apr 3, 2003)

Rivkah has an ultrasound scheduled for next week; hopefully that will show improvement. I imagine that at her appointment, we'll talk about early signs of UTI's so that I can keep an eye on her, but with the way she's growing and definately urinating, I feel like things will probably be fine. I'm still worried about it sometimes, but it's really hard to worry when I look at her and she seems so big and healthy and _present_. She doesn't look, smell, or act unhealthy, she seems just fine.


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## behr (Dec 10, 2001)

Wow, this is good news, really. It sure sounds as if Rivkah is doing allright, and she's also being checked for trouble.
Good luck on the ultrasound, I'm keeping my fingers crossed for positive results!!


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## Brayg (Jun 18, 2003)

That sounds very positive Rynna! Enjoy that baby of yours! She's just so precious.


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## Peppamint (Oct 19, 2002)

:







:

I hope things go well with the u/s, keep us updated!


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## eilonwy (Apr 3, 2003)

Miss BooBah has had another ultrasound, a VCUG, and an NMR since I last posted. She has seen a urologist and will be seeing him again next weel; she also has an appointment scheduled with a pediatric nephrologist for the end of October.

Most recently, her bloodwork has indicated liver inflammation. I did an internet search and found an article in "Pediatrics" from 1997 which pretty much describes BooBah. The two children in the report have a lot in common with BooBah, except that their illness was caught later rather than sooner, and they were both older when the got sick. It's a really scary thought, but it's possible that this is what's wrong with her, and at least I'd have an answer. It's definately not the answer I want to hear (We're so sorry we scared you! Everything is fine!) but it's an answer, and that's something.

I'm really nervous about this, and afraid. I'm going to bring a copy of the article with me when I go to the urologist and another copy to the nephrologist and one for her family doctor. Hopefully one of them will tell me that these kids are not like BooBah, but I sincerly doubt that they will. I'm so depressed about this! I'm really hoping that I'm wrong, because this is some scary stuff.







I love my little BooBah so much, I just want her to be big and strong and _well_.


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## Peppamint (Oct 19, 2002)

2: Rynna!!!!! Keep us updated, I'll be thinking of and praying for ya!


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## armonia (Mar 24, 2002)

I hope that everything turns out to be OK. Best wishes to you and your daughter during this difficult time.


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## Scarlett Mother (Aug 30, 2003)

I just want to echo support for you and your family. I've never had to deal with a loss like that of most people on this board, but recently I've had friends lose babies (one at about 8 months gestation and another was an ectopic pregnancy) so I've been reading here to gain insight. About your sweet little one--I think you should be as frank as possible with all of your doctors that you *want* to know as much as you possibly can. I think a lot of doctors don't know how to talk to people about scary health issues. They don't want to scare you if it's really not that big a deal and they don't want to give you false hope if it really is a big deal so they just don't say much at all. Maybe if you tell them all that you cope better with information--as much as they have or don't have--some of them will spill for you.

Good luck and I truly sincerely hope all turns out for the best.


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