Terrible news - Mothering Forums

Forum Jump: 
 
Thread Tools
Old 06-21-2014, 08:30 AM - Thread Starter
 
Galatea's Avatar
 
Join Date: Jun 2004
Location: Pittsburgh, PA
Posts: 7,153
Mentioned: 41 Post(s)
Tagged: 1 Thread(s)
Quoted: 46 Post(s)
Terrible news

We got the results of our MaterniT21 test. Baby tested positive for a very rare chromosomal problem. We have to have an amnio on Monday to see if the baby really has it. We are only the second family ever to test positive for this (they just added it to the test last fall) and the other family's baby did end up having it. Because it is so rare, they cannot tell us the true odds that the baby really is sick, so we will have to wait 1-2 weeks after the amnio to get results. Based on that, if it is truly positive, we are looking at losing the baby around 16-17 weeks pregnant. I have never had a loss but expect that at that point, it is a labor with milk coming in, etc.

Obviously I would like to keep up hope that the baby is actually okay and we just got a false positive, but because it is so new on the test, I don't have any way to guess or hope. I do feel the baby moving often (which means nothing for the prognosis - it's just really upsetting.) And the worst part is that I did ask the sex of the baby and it is a girl as we wished, and that somehow makes it even worse.

My SIL is due any minute and I have a baby shower tomorrow for a cousin and my whole family is coming into town for my dad's birthday party at the time we will be receiving or waiting for the amnio results, but no one knows but me and dh. I don't know how to continue my life for the next two and a half weeks, how to take care of my other kids, nothing. I am telling you all because I am not going to come here for awhile but didn't want to just disappear.
Galatea is online now  
Sponsored Links
Advertisement
 
Old 06-21-2014, 09:10 AM
 
zjande's Avatar
 
Join Date: Nov 2002
Location: on the dusty homestead
Posts: 5,195
Mentioned: 22 Post(s)
Tagged: 0 Thread(s)
Quoted: 32 Post(s)
Oh no, no, no! :(

Maybe the test is wrong! It totally could be!

What a difficult next few weeks it will be. I'm interested to know the name of the chromosomal defect, unless it's too personal. We'll miss you while you're away from the group.

Here's to hoping the test is wrong, wrong, wrong. ❀️
zjande is online now  
Old 06-21-2014, 09:21 AM
 
zjande's Avatar
 
Join Date: Nov 2002
Location: on the dusty homestead
Posts: 5,195
Mentioned: 22 Post(s)
Tagged: 0 Thread(s)
Quoted: 32 Post(s)
http://community.babycenter.com/post...speed=noscript

Okay so that guy is only mentioning DS, but I just wanted to point out that the test is not 100%. I hope you are one of the false positives. πŸ’•
zjande is online now  
Old 06-21-2014, 11:24 AM
 
JessieBird's Avatar
 
Join Date: Nov 2008
Location: Quebec, Canada
Posts: 1,423
Mentioned: 9 Post(s)
Tagged: 0 Thread(s)
Quoted: 12 Post(s)
Oh Galatea I am so sorry to hear this news. I can understand how devastated and scared you must feel - and to have to wait another few weeks until you know for sure. I hope that you can still find some comfort in knowing that you are providing a loving caring home for your little girl right now and that your time joined together is precious, no matter how short or long it lasts - hopefully 9 months and many, many decades after that. You are in my thoughts and I am hoping with everything in me that the test turns out to be wrong.
JessieBird is offline  
Old 06-21-2014, 11:36 AM
 
crunchymama27's Avatar
 
Join Date: Feb 2012
Location: NorHum, California
Posts: 73
Mentioned: 13 Post(s)
Tagged: 0 Thread(s)
Quoted: 13 Post(s)
Please make sure they are using ultrasound visualization in conjunction with amnio. Too many accidents happen with that test alone. It is scary to face loss, but scarier to cause it. Hopefully your results will be good and this is just a scare to pass through.

At 16 to 17 weeks, no you will not have milk come in. It will take a few months for your hormones to normalize.

sending you hope.
crunchymama27 is offline  
Old 06-21-2014, 02:40 PM - Thread Starter
 
Galatea's Avatar
 
Join Date: Jun 2004
Location: Pittsburgh, PA
Posts: 7,153
Mentioned: 41 Post(s)
Tagged: 1 Thread(s)
Quoted: 46 Post(s)
It is called deletion 1p36.

There is not enough real world data to know our chance of the test being wrong. The only other baby who tested positive did have it. But I am hoping one is not enough to say we have no hope.

I don't know how to enjoy the time I do have with the baby. I can't even call it a girl. I never had strong bonding feelings until my kids were here, and I just keep thinking about how my daughter wants a baby sister so bad, and how rare girls are in our family, and how we may never have another.

They said I would have option of medical or surgical termination at that many weeks, but medical (induction/giving birth) tended to be emotionally better for moms and families. I dread telling the kids the most, and of course we had got so much stuff for the baby already that we would have to hide or something.

Are you sure I wouldn't make milk?
Galatea is online now  
Old 06-21-2014, 02:42 PM - Thread Starter
 
Galatea's Avatar
 
Join Date: Jun 2004
Location: Pittsburgh, PA
Posts: 7,153
Mentioned: 41 Post(s)
Tagged: 1 Thread(s)
Quoted: 46 Post(s)
Yes they use ultrasound to guide needle.
Galatea is online now  
Old 06-21-2014, 02:48 PM
 
LilyTiger's Avatar
 
Join Date: Dec 2011
Location: Upstate NY
Posts: 1,995
Mentioned: 26 Post(s)
Tagged: 0 Thread(s)
Quoted: 38 Post(s)
I'm so so sorry. How terrifying, even if everything is totally fine. I'm hoping and praying for you that the test was a false positive and that the amnio comes back clear.

Do you have any religious/spiritual/relaxation habits you can start/rely on in the meantime? Yoga, meditation, acupuncture, prayer, whatever? Two weeks is a horrible amount of time to wait and you'll need help and support to get through it. Know that you're in our thoughts even when you're understandably absent.
LilyTiger is offline  
Old 06-21-2014, 05:04 PM
 
apeydef's Avatar
 
Join Date: Mar 2013
Posts: 1,491
Mentioned: 69 Post(s)
Tagged: 0 Thread(s)
Quoted: 132 Post(s)
I do not have words for you! I'm so sorry. I'm praying the test is wrong!

Unfortunately I had a MC at 12 weeks and did have milk come in. I delivered the baby at home. But it was very little milk. Drops maybe. Hope I'm not being insensitive I was just giving an answer to your question/statement.
apeydef is online now  
Old 06-21-2014, 07:46 PM - Thread Starter
 
Galatea's Avatar
 
Join Date: Jun 2004
Location: Pittsburgh, PA
Posts: 7,153
Mentioned: 41 Post(s)
Tagged: 1 Thread(s)
Quoted: 46 Post(s)
Not at all insensitive. :)

I am an atheist. No spiritual practice to speak of.
Galatea is online now  
Old 06-22-2014, 07:16 AM
 
Ekatherina's Avatar
 
Join Date: Sep 2004
Location: Lebanon
Posts: 800
Mentioned: 3 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
just hope everything turns out fine. 😘😘😘😘😘lots lots love your way, i know it is difficult but try ti distruct urself from the bad thoughts coming to ur mind. just push them away! 😘😘😘😘
Ekatherina is offline  
Old 06-22-2014, 04:39 PM
 
badwolf092087's Avatar
 
Join Date: Nov 2013
Location: Stamford, CT
Posts: 957
Mentioned: 47 Post(s)
Tagged: 0 Thread(s)
Quoted: 100 Post(s)
Would the loss be because of the possible sickness? Or by choice? Pardon my confusion.

I honestly hope it is a false positive, and that you do get this baby girl. Well wishes your way.
badwolf092087 is offline  
Old 06-23-2014, 12:29 PM
 
3surfboys's Avatar
 
Join Date: Feb 2008
Location: VA
Posts: 348
Mentioned: 12 Post(s)
Tagged: 0 Thread(s)
Quoted: 15 Post(s)
I'm sorry! I'm sending you peaceful thoughts, especially with getting through all your family events.
3surfboys is offline  
Old 06-23-2014, 01:54 PM - Thread Starter
 
Galatea's Avatar
 
Join Date: Jun 2004
Location: Pittsburgh, PA
Posts: 7,153
Mentioned: 41 Post(s)
Tagged: 1 Thread(s)
Quoted: 46 Post(s)
Had the amnio today. It hurt. Very upsetting to see the baby on ultrasound as it might be the last time. Found out two babies tested positive so far; one really had it and one didn't. Mine is the third. I guess I should have hope at what is currently 50/50 odds, but since it is so new, no one really knows my chances, and I am finding it hard to be hopeful. We will know in 7-8 days.

Syndrome is not fatal, but has a lot of serious health problems, including constant seizures, heart defects, blindness, deafness, inability to walk, almost none ever talk or toilet train, cannot suck/swallow and choke often... Not a very great prognosis and of course there is no way to tell.
Galatea is online now  
Old 06-23-2014, 04:32 PM
 
Mizyellow's Avatar
 
Join Date: Jul 2009
Location: Columbus,OH
Posts: 467
Mentioned: 3 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
I am so freaking sorry. That is just the worst news any mother can hear. I am crossing all fingers for better news
Mizyellow is offline  
Old 06-24-2014, 06:46 AM
 
Ekatherina's Avatar
 
Join Date: Sep 2004
Location: Lebanon
Posts: 800
Mentioned: 3 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™
Ekatherina is offline  
Old 06-24-2014, 11:18 AM
 
Chapsie's Avatar
 
Join Date: Jul 2011
Location: New York
Posts: 982
Mentioned: 50 Post(s)
Tagged: 0 Thread(s)
Quoted: 35 Post(s)
I am just reading your update now. Oh, Galatea, I am so so so sorry for this news. You have been such an important member of our little group and I have really enjoyed being pregnant with you!! You and your family are in my prayers. Is there any way you can recruit some of your extended family to help take your kids out for playdates / sleepovers / dinner/ etc. while they are in town? I know that with birth, healing, grieving, and even just in this season of not knowing, it is hard to care for the other children. They will be able to read your emotions. Children can be very intuitive. It might be a fun time for them to be loved on by other people as you spend time taking care of yourself as best as you can. Keep up with your vitamins, good nutrition, plenty of sleep, time outdoors, journaling, light exercise.

huge hug!!
Chapsie is online now  
Old 06-24-2014, 12:10 PM
 
nsmomtobe's Avatar
 
Join Date: Aug 2009
Location: NS, Canada
Posts: 1,221
Mentioned: 12 Post(s)
Tagged: 0 Thread(s)
Quoted: 24 Post(s)
Wow, I am so sorry that you are going through this right now. I'm glad it looks like there is only a 50% chance, but I can't imagine how scary it must be for you.
nsmomtobe is online now  
Old 06-25-2014, 01:28 AM
 
dmariev's Avatar
 
Join Date: Nov 2008
Location: Tracy, CA
Posts: 689
Mentioned: 14 Post(s)
Tagged: 0 Thread(s)
Quoted: 8 Post(s)
@Galatea I'm sending you all the positive vibes I can! I really hope the test wasn't accurate! I will keep you and your little one in my thoughts!
dmariev is offline  
Old 06-25-2014, 05:42 AM - Thread Starter
 
Galatea's Avatar
 
Join Date: Jun 2004
Location: Pittsburgh, PA
Posts: 7,153
Mentioned: 41 Post(s)
Tagged: 1 Thread(s)
Quoted: 46 Post(s)
Thank you to everyone for the good wishes.

I am seeing my former psychologist this evening to talk - she made time for me after hours. Other than that, only my sister and best friend know the situation, and my sister doesn't live here. My dh is working long hours this Wednesday through Saturday, but I told him not to make any plans on Sunday, as we anticipate the news on Monday or Tuesday. My family comes on Wednesday or Thursday, so I really hope we get a definitive diagnosis on Monday or Tuesday so that it can all be over before the big birthday party on the following Sunday. If that happens, I am sure my family will take care of my kids for me while I am recovering. If we don't have an answer and resolution before the party, I cannot imagine how terrible it will be talking about my pregnancy to acquaintances and extended family all the while knowing it might/will be about to end.

In better news, after a day of early labor, it looks like my SIL is at 8 cm and will have their second baby very soon. Luckily I dreamed all night about her labor instead of sick and dead babies. I was her doula or midwife in a very dirty, backward, primitive environment, but I did a good job and her baby was born.
Galatea is online now  
Old 06-25-2014, 10:52 AM
 
crunchymama27's Avatar
 
Join Date: Feb 2012
Location: NorHum, California
Posts: 73
Mentioned: 13 Post(s)
Tagged: 0 Thread(s)
Quoted: 13 Post(s)
The internet disagrees with me, saying you could start producing milk as early as 16 weeks gestation.

http://www.angelfire.com/journal/old...ngorgement.htm

How long do you have to wait for amnio results?
crunchymama27 is offline  
Old 06-25-2014, 12:38 PM
 
badwolf092087's Avatar
 
Join Date: Nov 2013
Location: Stamford, CT
Posts: 957
Mentioned: 47 Post(s)
Tagged: 0 Thread(s)
Quoted: 100 Post(s)
I am so sorry! I hope that you don't have to suffer through the loss, and that this is truly a false positive. Hugs and prayers your way.
badwolf092087 is offline  
Old 06-25-2014, 01:50 PM - Thread Starter
 
Galatea's Avatar
 
Join Date: Jun 2004
Location: Pittsburgh, PA
Posts: 7,153
Mentioned: 41 Post(s)
Tagged: 1 Thread(s)
Quoted: 46 Post(s)
Supposed to get results Monday or Tuesday. I fully expect to make milk and am trying to find a "tight sports bra."
Galatea is online now  
Old 06-25-2014, 06:13 PM
 
Bracha04's Avatar
 
Join Date: Jul 2013
Posts: 58
Mentioned: 9 Post(s)
Tagged: 0 Thread(s)
Quoted: 11 Post(s)
I am sorry that you are experiencing this and I hope for a good test result next week for you. Hugs and warm thoughts.
Bracha04 is online now  
Old 06-26-2014, 06:25 PM
Guest
 
Join Date: Aug 2010
Posts: 64
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Galatea - So sorry about your news. The waiting part is the most torturous part and you seem to be handling things very smartly.

I too hope for the best results possible. I hope the days between now and Monday (or Tuesday) go by really fast.

I am also an atheist and in difficult situations I often wish I could believe or have faith in "something" to keep my mind occupied. But instead I tend to think of the worst possible outcome, which is a little bit like thinking "I fully expect to make milk".

I truly hope you don't make milk until in about five to six months from now.
Sincerely,
SF
xxxxxxxxxxxxsweetface is offline  
Old 06-26-2014, 06:49 PM
 
maranapanda's Avatar
 
Join Date: Jun 2006
Location: San Fransisco Bay area, Northern California
Posts: 509
Mentioned: 7 Post(s)
Tagged: 0 Thread(s)
Quoted: 12 Post(s)
Oh my. I've been away, and I'm just now seeing this. My heart aches for you. 50% odds aren't so bad, and I'm going with the group putting all my positive energy out in the universe that you'll get that false positive that we're all waiting for you to hear.

You've gotten so much great, loving advice that I'm just going to add my love and support your way. When this is over we'll all celebrate with you.

Much love, and be gentle with yourself,
Amanda
maranapanda is online now  
Old 06-27-2014, 07:25 AM - Thread Starter
 
Galatea's Avatar
 
Join Date: Jun 2004
Location: Pittsburgh, PA
Posts: 7,153
Mentioned: 41 Post(s)
Tagged: 1 Thread(s)
Quoted: 46 Post(s)
On the technical side, I did find a tight sports bra but I couldn't find my belly wrap from last time, so I ordered another one.

I saw my former therapist on Wednesday and got time alone in the car to get brave enough to talk to my baby girl. Doing that helped a lot and I cried a lot. But then on Thursday, my brain was throwing up hope to me and that was really annoying. I went to see my new nephew at the hospital, and he was very cute with that tiny softball head, so different from the pictures of 16 week fetuses I had been looking at to prepare myself. I was ok until my SIL said something about "You know how you are so glad the baby is healthy," and I got quiet and couldn't really say anything. I hope they don't think I was thinking bad thoughts about them circumcising their kids, because I was thinking about myself, but who knows. If we do lose the baby, they will know why I was sad soon enough. Dh said he was very impressed that I went to see their baby, but I didn't feel like I had a choice not to; they and their little baby did nothing wrong and they deserve the adoration. So, I kept busy with seeing their baby and hanging out with my BFF on Thursday but I don't know if that was a good or bad idea because I didn't end up having any processing time and didn't cry at all.

Last night I watched The Dark Knight Rises with my older kids and there is a part where the villain explains that his prison works so well because being able to see a potential way out gives the prisoners hope, and their despair cannot be complete without hope. That is how I feel - like the hope is bad, and it would be easier emotionally if there were no hope, but the hope sneaks in, and then I feel it will make the grief worse when the bad news comes. I have little hope of getting good news for two reasons: 1. The test is so new that only having had two positives is not enough data to say if my chances really are 50/50; 2. I had two dreams earlier in my pregnancy, before I knew this, that I think were prophetic. The first one was two months ago - I miscarried and held a baby in the palm of my hand and showed it to my dh. The baby at 16 weeks will be about 4.5 inches, just about hand-size. The second one was two weeks ago - I gave birth now, very early, but I was asleep for it, and I woke up and asked my MW how the birth went. I think that one was telling me to have an induction (not an extraction) when/if the baby dies.
Galatea is online now  
Old 06-27-2014, 05:30 PM
 
maranapanda's Avatar
 
Join Date: Jun 2006
Location: San Fransisco Bay area, Northern California
Posts: 509
Mentioned: 7 Post(s)
Tagged: 0 Thread(s)
Quoted: 12 Post(s)
I totally get the no hope thing. So you focus on preparing yourself for the worst. Strengthen your defenses. Start doing whatever you need.

We'll be here. Silently throwing all our hopes and prayers out there. We've got that covered mama. And we'll be here for you no matter what news you receive in the next few days. No matter where this journey takes you.

You take care of you. We'll be here.

Much love.
maranapanda is online now  
Old 06-30-2014, 06:09 AM - Thread Starter
 
Galatea's Avatar
 
Join Date: Jun 2004
Location: Pittsburgh, PA
Posts: 7,153
Mentioned: 41 Post(s)
Tagged: 1 Thread(s)
Quoted: 46 Post(s)
We should hear today or tomorrow.
Galatea is online now  
Old 06-30-2014, 11:43 AM
Guest
 
Join Date: Aug 2010
Posts: 64
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Galatea - hope is hard. A singer I really love says that "he hates hope", I once saw a concert where he had a really amazing funny rant about it.

Hang in there and "hopefully" the next few hours will go by rapidly. I don't know you, but I am very impressed with your attitude on the matter and wish I had your kind of strength.

Like everyone else here I am eager to hear your news and I send you positive thoughts into the air.

You deserve the best and treat yourself kindly for the next little bit.

SF.
xxxxxxxxxxxxsweetface is offline  
 
User Tag List

Thread Tools


Forum Jump: 

Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off