Need some advice and encouragement

[corhorvath]

Hi All, I've written too many times about things going on with my baby and this pregnancy. Today was my basic prenatal and marks the start of week 38. So far, the baby has a 50% chance of having a genetic disorder that affects her liver and lungs (Alpha-1 antitrypsin), she has two spots in her abdomen that doctors think is meconium peritonitis and she may need surgery at birth. Through all of this, I've been hopeful we could beat the odds. I've prayed my little heart out, cried, and become a social recluse as I wait anxiously for this pregnancy to end so I can meet my little girl and really deal with what's going on.

So, today at the appointment I mentioned I'm not feeling as much movement but that she's still in there moving around. I ASSUMED the doc would say, "oh, that's normal. The baby doesn't have as much space..." I was just making conversation and had no idea they would do a NST.

With the NST, they found that she's moving normal and her heart rate is good--but when she moves, her heart rate dropped a bit. Then, they checked her amniotic fluid because of the NST results and found that the amount of fluid is up to out of the normal range (26, I think highest in the normal range is 24). Now, I've had to get ultrasounds every 4 weeks since week 22 so I know this is a new discovery. I read what it could be in the text books and am terrified. Does anyone here know anything about this?

I have to go back on Monday for another NST and AFI monitor. I'm assuming that if they see the same thing I'm going to get a big talk about induction. At this point, I don't feel like I have the strength and ability to hear more bad news and just keep waiting. I cannot explain how awful this pregnancy has been. I feel like every hope I had was completely depleated today. Not by the docs but by my research afterwards. She likely has a problem with her bowels, could have cystic fibrosis, or something else that requires surgery. The textbook (Williams Obstetrics, copyright 2006) said that fetal abnormality is common when fluid levels are high.

So, I guess I should move on to coping? The textbook said that the fluid levels could mean the same things that the spots mean and so now I just feel like I've been handed the prognosis and have no hope left and it just feels terrible.

[Tine]

Hugs are all I have to offer, but there's no way I could read your post and not respond. I wish I knew something about what you're going through, so I could offer some advice.

[HappiLeigh]

Oh mama, how stressful.
: Sending prayers for you and little babe...

[honeybee]

I'm so sorry you're going through this. My prayers are with you.

[kellykins]

ditto.. All I've got are lots of hugs for you. Big, round bellied hugs.

[Mariposa]

wish there was something i could say to make it all better. s and i will keep your family and your precious baby in my prayers.

[ellie_may12]

s I can offer nothing but support and prayers.

[corhorvath]

Thank you for all your hugs, well wishes, and prayers. I just got off the phone with the doctor to ask about the information I read about. Basically, she validated what I found-which I was hoping would not be the case.

I really don't know where to turn from here. I have faced so many challenges in my life and have never felt defeated. So many times people told me I wouldn't be able to do something but I knew I could and always succeeded. With this, it was the opposite. I can't do anything for her and no matter what I've done, it's just gotten worse. Literally, every month has been worse than the preceeding. I emotionally and mentally don't know how to handle this.

It just helps to write which is how I've always processed. It's just usually I write in a journal rather tell people about it. Thank you again for reading and for your well wishes. I'll keep you updated.

[scubamom]

mamma i want to offer you big hugs, and prayers.
At this stage of your pregnancy she needs you to be strong and help her come into the world. Once she is out and you can hold her and look into her eyes you will be so much stonger and able to deal with anything that is thrown at you. Because she will be there and the love that i felt instantly for my ds helps you to be stronger than you think you can be

[RedOakMomma]

scubamom is right.

Once she's in your arms, you'll feel so much stronger. You'll have your precious babe, and together you'll feel like you can accomplish miracles. It's not all sunshine, there are still fears, but I think you're doing the right thing-- talking and writing about those fears is the best way to wrap your mind around them.

I know it seems like a set-up for heartbreak, but try to have the courage to have some faith that everything will be okay. Fluid levels can be high or low in typical pregnancies, too.

And, too, if something is wrong, it may not be *that* bad...rememeber, kids with disabilities (minor ones or more severe ones like my kids) are just as loveable, just as fun to raise, and life with a disabled kid is *so* much like life with a "typical" kid...no matter what, there's a good life for you and your daughter ahead of you. It may not be the life you imagined, but it probably won't be that far off.

Oh...and I don't know if this is helpful or not, but my friend's son Tyler was born with bowel problems (not diagnosed prenatally, but it could/should have been). He's a completely normal, FANTASTIC little kid. He's had to have a couple of surgeries, had some of his intestines removed, he can't eat popcorn or a few other foods, and at 7 he still sometimes needs to wear a modified kid-diaper because of bowel control issues. Know what, though? He's awesome!!! Great in school, great in sports, and the most loving-est little kid around. Technically he's different than other kids, but he doesn't think so and nobody around him thinks so, either.

Wishing you peace, calm, and the best outcome possible. Whatever happens, you'll have the stregth and love to pull through.

[rmzbm]

to you & ditto what everyone else has said!!

[corhorvath]

Thank you again mammas! I know Scubamom and RedOakMomma are right, but you know what's weird, since I've given that strong hold I had on hope, I feel better. I feel like I've moved on to accepting that something's probably going to be "wrong" with her and we're just going to have to deal with it. I don't feel so frantic and I'm not desperately trying pushing the negative possibilities out of my head anymore-they were just going to my stomach anyways. I feel lighter and ready than I did before. I feel closer to her and more able to handle what may or may not lay ahead.

Yesterday, I felt so much bitterness that my baby will likely be sick. I gave in and felt terrible, but today I feel like we can handle it. The thought of her tiny body needing surgery just breaks my heart, but I read about the other babies from this group and other sites and learned babies and parents are stronger than I think. I obviously have hope that it's not too bad but accepting the possibility rather than fighting it has taken a world of pressure off my shoulders.

I do appreciate all of your encouragement, it's really helped. I'll keep you posted.

[AppleCrisp]

Originally Posted by scubamom

Because she will be there and the love that i felt instantly for my ds helps you to be stronger than you think you can be

Yeah, that!! Again, don't know much about it from the medical end of things, but you WILL deal because you CAN! Keep us posted, and hang in there.