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Sneaking in in desperation, not sure if I really belong here.....


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  #1  
November 12th, 2009, 07:42 AM
Delekatala's Avatar Mega Super Mommy
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Hello ladies. I decided I really need to vent after being up all night. I have been having a very hard time lately, and am at my wits end. But there is a lot of backstory. I apologize in advance, but I think I just need to type everything all out and it is probably gonna be long.

4 and a half years ago or so my husband and I decided to have a baby. Time seemed as good as it would get, my son is autistic and had finally made enough progress that we felt we could handle another one. I had been approved for SSI for panic disorder w/ Agoraphobia that keeps me from working, but I manage to handle fairly well when it comes to parenting and other aspects of my life. So we started trying and month after month nothing happened. I was so frustrated I got pregnant with Alexander so easily, he was a one night stand gone bad in fact (best mistake I ever made). Then I got a bad yeast infection. I went to the Dr for it and despite medication, and all sorts of other crazy things it wouldn't go away for 4 months. So my OB asked me to take a blood test for diabetes, because this can happen in diabetics... high sugar feeds the yeast. Long story short I am a type 2 diabetic.

So I had to stop trying and get the diabetes under control. Then I had to go to a high risk prenatal center for a diabetic prepregnancy program to prepare to get pregnant because type 2 diabetes is very dangerous in pregnancy. Finally during all this we find out that the diabetes shut down my ovaries. After 6 months of pretending I am pregnant and practicing controlling my sugars really well, they decided we could get pregnant and We were prescribed clomid. After two months we finally got pregnant! I was so elated I had waited 3 and a half years for this. But then I got really really sick, not morning sickness, I could barely function or move I had no strength. We went back and forth to the ER doing ultrasounds and betas every few days, they were puzzled because the betas were good and high, but they couldn't see the baby just a sac. Finally one day they sent me to a bigger fancier ultrasound place for a more indepth ultrasound. Turns out I was having twins, one sac was hidden and my betas were higher because of that. YAY, we knew there was a chance of twins. We saw the high risk clinic and I practically lived there, and it was hard work. I had lots and lots of ultrasounds, and got to see the babies all the time, At around 20 weeks one of the babies started not growing as well. Around 25 weeks she stopped growing all together, 26 weeks she started failing her Non stress tests. Her cord was not working as well as it should, one complication that can happen with diabetes, damage to our viens from high sugar causes us circulation problems and can cause the same problems with circulation to the umbilical cord. Finally at 29 weeks they said she was going to die if they didn't take her out, her cord was just stopping blood flow completely every 5 seconds or so.

So December 29, 2008 I gave birth to my two beautiful girls Genevive was born first at 3 lb 1 oz, and Lillian was born second at 1lb 13oz. THey were both gorgeous. Cut here for beautiful photos of my babies!


Yeah, I know the cord looks just fine doesn't it. Although I guess normally it wouldn't be so white. SO of course both babies went into the NICU. They were both doing fantastic for thier gestation. At two weeks old Genevive got sick. She had a disease called NEC which in rare cases can be very severe and cause a bowel perforation. Genevive has surgey twice and lost most of her bowel to the disease. At 16 days old She passed away due to overwhelming sepsis from the perforation, and we now know she also had a staph infection from Klebsiella oxytoca. I could go on for hours about my Genevive, But I will say she passed away peacefully in my arms. We spent the whole day with her, and made a lot of memories and took beautiful photos. And she had an extravagant funeral, it was truly beautiful.

Right after the funeral Lillian took a turn for the worst. It turns out she meningitis, the same bacteria as Genevive, Klebsiella, in her spinal fluid. She had a rough two weeks but pulled through it ok. And the rest of her NICU stay was fairly uneventful, just the usual preemie stuff. After 67 days she came home at a whopping 4 lb 5 oz. She has been growing and thriving, and is a happy spunky 10.5 month old now. She is gorgeous! She weighs 15 lb 5 oz last wednesday.


I know that things are good now, But I have just been having such a hard time. When the 9 month anniversary of genevive's death came and went I started not being able to sleep. I thought it was the same little bout of depression I got at both 3 months and 6 months. But it just hasn't stopped. My anxiety has been out of control. I cannot sleep at night, I am up all night and can only fall asleep in the morning when Eddy gets up. I have panic attacks all night long and a lot of the day. I have been skipping appointments, and having a hard time keeping my diabetes under control. I think it might be a cross of the 9 month anniversary, and the 1 year being so close, as well as thier birthday coming up and the holiday season started. I am dwelling on all of these things. I have always been able to keep a handle on my anxiety disorder and do the important things in my life. And now I am failing at that.

And people just don't understand, most people don't take anxiety serious. They think it is the same as when someone says they are stressed. But an anxiety disorder like panic disorder is a real mental illness, it stops you from doing things. It governs your life, you react to things in a way you are not supposed to. Then you add on the whole grief aspect of it, my baby died and everyone seems to have forgotten. I have been told to move on, but you don't move on from something like that. You learn to live with it of course, and I am trying very hard, but I am so afraid of something happening to Lillian and I miss genevive so much. And there is no one to talk to about it, no one wants to talk about a baby dieing. I am feeling very alone and very afraid and having a hard time functioning.

I really just want to sleep, I am getting barely 4 hours a day. I laid down last night for hours hoping to fall sleep, when I finally did I woke up 45 minutes later because Lillian coughed. I was afraid she was gagging and stopped breathing. She is just getting over the flu, and she is asthmatic, micropreemies like her have a lot of lung issues.

I told my counselor and my doctor that my anxiety was getting out of control, and he prescribed me lexapro and ativan. The ativan is a very small dose and won't help the major anxiety I am having, plus it is habit forming so I am afraid to take it a lot. The lexapro helped immensly, but my insurance normally won't cover it and the doctor still hasn't filed the form to have it covered. I have been waiting and waiting. In the meantime of course I am missing my apointments for my diabetes and what not because I hole myself into the house when my anxiety is to high, that is what agorophobia is. I have left my house I think twice in the last month and a half. Halloween and a parent teacher conference at Alex's school. And that was terrible, my anxiety in the car was so bad I was sure we would get into an accident.

I know these thoughts are abnormal, and I know that is what mental illness is. but that doesn't stop them from coming and they feel real. When I say I am afraid of something I am really feeling afraid. Remember when you last were scared, and imagine feeling like that all of the time, it is paralyzing.

I just want to sleep, and I want to go out, and I want to stop being afraid. I know a baby can die now, and I am not sure how to get over that. I am afraid something will happen to Lillian, SIDS, RSV, there are so many things that can affect a preemie, its scary. And I know the holidays are coming and I am afraid everyone will forget genevive and pretend she didn't exist. No one talks about her and people avoid me like a plague, I have the "make a baby die disease". I just can't handle that. I know I have Lillian but that doesn't replace the other. And I feel a lack of support. The child loss forum is pretty much dead, the stillbirth forum I feel as if I don't belong in there. People with a loss don't get mental illness, and people with mental illness don't understand grief.

I feel I am truly going out of my mind. Insanity is taking over, and I my children to take care of. When I woke up at 4am after just having fallen asleep, I just broke down. I am trying everything can and I can't stop what is going on. I have gotten comments about how Genevive is gone and I have to be healthy for my living children. BUT I am not choosing this. I would give anything at this point for some sleep, it just won't come. I am trying to be healthy, I think stress is affecting my sugars, which then causes even more anxiety. I feel like I am being swallowed up by a dark cloud. And trying to pretend everything is ok is exhausting.

SO anyhow not sure exactly what the point of this post is, except to get it all out I guess. Anyone got any ideas? I need to fix me.
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  #2  
November 12th, 2009, 03:38 PM
pmdc5286's Avatar Mega Super Mommy
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Jenny, Sweetie, I want to give you huge hugs and I am welcome you to the board. I am Patty the host here. Of course you belong here, anytime you have a long time disease that impairs your life, and how you function daily, that it what this board is here for. I am also going to send you a PM as well too.
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  #3  
November 13th, 2009, 02:41 AM
Delekatala's Avatar Mega Super Mommy
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Thank you, i did get the Pm and will write back Later on when i have more time.
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  #4  
March 2nd, 2010, 01:55 AM
jojo1207's Avatar Ayla 11/8/10
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Hey sweetie. You've had a rough road. As a panic disorder survivor, I know exactly what you're going through with that. I had it for a year starting after the birth of my third child - every minute of every day I was having an attack. I couldn't bear the thought of living the rest of my life that way. There is a way out without meds (which in my experience actually made it worse) if you're interested in trying it. I'm happy to share. As for your loss of Genevieve - I am sorry. Lillian is such an amazingly beautiful baby, it's so sad to see that Genevieve did not make it along with her where she belongs. My second child (Xander) was born early and ended up with NEC at 1mo. He too had bowel resection and sepsis, although he did finally pull through after four long months of hospitalization, gtube, TPN, etc. He had a 20% survival expectation - he was very lucky. This too, I've been through and I'm so sorry Genevieve had to go through this.

You are an amazing mom and all of what you are feeling is normal. Grieving is very important to your healing and Genevieve will always be alive and well in your heart. Lillian always carries a part of her with her always as well. We almost lost Xander and just the 'almost' brings me to tears even 5yrs later - losing a child is not a pain any mother (or parent) should ever have to endure.

Big hugs sweetie. You are not falling apart - you are being a human and a mother. The grief of losing your baby I cannot help with, nor can I help you with your diabetes, but I can try to help you with your anxiety. The method I used DID work for me, permanently. I still feel normal anxiety here and there like a normal person, but nothing like that god awful life constricting every day is a nightmare panic. Let me know if I can help you.

PS - I was rx'd Lexapro too... WORST thing I could have ever done! Took 18mo for the withdrawals to stop and I have residual damage - still twitch to this day. They write that one out like candy now - be warned.
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Last edited by jojo1207; March 2nd, 2010 at 01:57 AM.
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