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micropreemies

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micropreemies

Postby MissingMolly » Tue Dec 06, 2011 02:43 am

by MissingMolly (41 Posts), Tue Dec 06, 2011 02:43 am

I'm feeling so confused and sad about why no one did anything for my baby. She was 23 weeks and 3 days, at least according to the 1st ultrasound we had at 10 weeks when they changed her due date based on her measurements. Yet, my doctor never officially changed anything with her staff, so they kept going by old dates which made it seem like my baby was 22 weeks and 5 days on the day she was delivered.

I'm angry that my doctor didn't update my due date and change my baby's age. My baby was still younger than the "age of viability" cut-off, but I've heard of plenty of other micropreemies who survived being born that young. The hospital had a level 3 NICU, and yet, even before she was born they told me she would be too small for their equipment. But she weighed a full pound! And I delivered at a Catholic hospital so you would think that they would advocate for the baby on some level, but they didn't. They refused to do *anything* for her. I just don't understand. I know that they needed to deliver her or we both would have died. But why didn't they try to save her? Why did they just write her off so completely? Why did they treat my baby as if she were a throw-away baby? I don't understand!
Mommy to Molly, who was born alive on Oct. 29, 2011 at 23+3 weeks due to severe pre-eclampsia/HELLP syndrome and passed away 3 hours later. Loved and missed every minute of every day...."If love could have saved you, you would have lived forever."
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Re: micropreemies

Postby blythe » Tue Dec 06, 2011 01:22 pm

by blythe (3060 Posts), Tue Dec 06, 2011 01:22 pm

I don't have personal experience with a micropreemie so I apologize in advance if I am overstepping or if I say anything that doesn't feel right to you.

I did a little googling and found this article http://www.nature.com/jp/journal/v28/n1 ... 0842a.html on the limits of viability. From my reading, your daughter fit in the "gray zone" (unless she was under 500 grams, then she was below the gray zone...) where even though she was born healthy, her developmental and health chances were very low so I'm guessing they decided "comfort care" was the best outcome. My heart breaks for you that you felt that they treated her as a "throw-away" baby. I wonder if instead they just didn't want to do anything painful or disruptive to her since her chances were so low and they wanted her to spend her short life with her mother and father.

Many of our members have taken the difficult step of meeting with their neonatologists and perinatologists to go over their records and ask all the questions they have, because we can only make guesses. They have the best information on your case. Only you can decide if that would be helpful for you, but it is sometimes an option.

This information feels very unfeeling to type out, but I am crying writing it, it breaks my heart that you and other women lose their babies like this to this horrible disease.
Heather, mom to
#1 7-18-03 - 5#8oz 37 weeks PE/PIH
#2 8-11-06 - 6#14oz 37 weeks PE/PIH
#3 9-10-09 - 5#10oz 37 weeks PE/PIH
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Re: micropreemies

Postby angieb » Tue Dec 06, 2011 04:12 pm

by angieb (1192 Posts), Tue Dec 06, 2011 04:12 pm

I understand where you are coming from, believe me, I have been there. Our daughter was born at 23+2 but due to severe growth restriction, she only weighed 10.5 ounces. They actually transferred me hospitals in an ambulance because we started at one with only a basic NICU, in the hopes that they could save her. This was one of the parts of her birth and death that was the hardest for me to come to grips with

Gestational age is almost as important as weight, if not more important, a lot of lung development doesn't even start happening until 24 weeks. That's probably why many/most hospitals don't consider a baby "viable" until 24 weeks. We were told by my mfm before my second pregnancy that they won't even give me steroid shots for lung development until 24 wks at least.

I know that doesn't make it any easier. And I know I will always wonder how it might have been different.

But even for 24 weekers, it is very very very iffy. And most often, the 24 weekers that do survive have extremely serious health problems. I know that we wouldn't love her any less, but after seeing my uncle who fought brain cancer and "won" go steadily downhill over the years to now be at a point where he can barely move, can't feed himself, can no longer use the bathroom, can't remember anything or anyone, can barely hear even with heavy duty hearing aids and practically screaming in his ears, and has horrible vision- if saving Olivia would have given her a life like that, I'm glad we just let her go. There are so many micropreemies who go through so much, vents, iv's, etc. etc. only to die a few days or even hours later, if Olivia was going to die regardless of what life-saving measures they provided, then I'm glad we didn't put her through that. ...I know there are so many "if's" and that is what makes it the hardest, because there's always the good if's too lingering in your mind (what if they had tried, and succeeded, and she was able to be relatively normal...) but the overwhelming odds are that if they had tried, they would have failed to ultimately save her, and if they had saved her, her quality of life would have been extremely poor. We have members here who had to make the decision to remove life support for their baby after tests showed no brain function, and I am thankful that at least we were spared that. But there have been times that I have bitterly resented that we were never even given a chance.

It took me at least a year, probably more like a year and a half, to get to a place where I am at peace with them letting her go. (And maybe it's because I have no choice if I want to let go of that resentment.) I feel like in the long run, it was the kindest thing for Olivia, a life with no needles, or tubes, or hopefully not any pain. Prolonging her life most likely would have not been successful and if by some miracle it was successful, she would not have had much if any quality of life. And if she was going to ultimately die no matter what happened, I'm glad that we let her go the kindest way possible.

I definitely still have my moments even more than 2 years later, but mostly I am at peace with at least this part of it. But it took me a long time to get there. I had the same questions and a lot of anger and bitterness for at least the first 6 months, especially about this part.

I am so sorry that Molly is not here. I am thinking of you.
Me (29) DH (30)
#1-Olivia Caetlyn-9-28-09-9-28-09, 23+2 wks, emergency classic c-section, class I HELLP, IUGR
#2- Lucas Oliver (rainbow baby)- April 2011, 36+2 wks, HELLP and pre-e free! (lovenox and LDA pregnancy)
#3-Matthew, late October 2012...mostly normal, 37 wks, (lovenox and LDA again)
My blog: http://www.butterflies-and-rainbows.blogspot.com/
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Re: micropreemies

Postby kerisue » Tue Dec 06, 2011 05:07 pm

by kerisue (623 Posts), Tue Dec 06, 2011 05:07 pm

My little one was born at 24+4, 1lb. 1oz. We had a few days warning so I did get the steroid shots. Even so on the day of delivery they told me about the high likelihood that she would die and asked me if I just wanted her provided with "comfort care" until she died or whether they should try and resuscitate her. At the time there was no question and I still feel like I made the right decision, but I know that her 3+ weeks of life were difficult and painful for her. It may be that the doctors who suggested "comfort care" for my little one and yours were just thinking it wasn't worth putting baby through the pain and stress of life saving efforts if it ultimately wouldn't make a difference. I'm not saying one or the other would have been right or wrong for Molly, but just guessing at what they were thinking given my own experience. In any case the experience of letting our babies go and having them die in our arms is the most emotionally excruciating thing I can think of.
Mama to Millie
born June 2010 @ 24 wks. gestation due to my severe PE and CHF
lived 25 days, loved and missed
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Re: micropreemies

Postby holly3372@msn.com » Wed Dec 07, 2011 07:29 am

by holly3372@msn.com (478 Posts), Wed Dec 07, 2011 07:29 am

I am so so sorry. I know so many of us that lost our babies have so many unanswered questions,so many what ifs and so on. I had a micropreemie. He was born at 26 weeks but weighed what a 23/24 weeker weighs 650 grams 1lb 6oz. from severe preeeclampsia and Iugr. At the time with the shock of it all (as it went from a supposed normal healthy pregnancy to hurry and get her the steroid shots we need to deliver classic emergency csection asap in a matter of days) I of course thought do all you can to save my baby. Now knowing what I know I would have let him go. By nature my son was not ready for the outside world,his lungs were so underdevelpoed. I will not get into details about all he went through but let me say he lived in torture ,pain and fear for 4 long months in the Nicu. I watched it all helplessly.I know some babies make it out and are ok I have heard the stories,seen it for myself and that is wonderful. However,there is the other side to it all. I am haunted by what he went through and wish he never had to know a single day of any of it. People tell me that I was lucky to get to meet him and spend time with him. I say that I would give it all back because that was no way to spend time with your child. I truly am sorry for what you had to go through. This disease preeclampsia has taken from us all in different ways. It has been over a year for us since we lost our son Benjamin. I grieve him everyday, mostly though my heart breaks from the memories of what he had to endure. The only peace I have now is that he passed away and didn't have to live another moment or a lifetime of pain and suffering. I hope that you can someday find some sense of peace ,that is my wish for you from one mother to another. Much love to you. xo
Benjamin Spider Reeves born 4-28-2010( 1lb 6oz 26 weeks to severe pre-e and Iugr) we lost you after 4 long months in the NICU. You fought so hard,and were so brave.Our first baby .We miss you everyday and love you forever xo

Expecting ,dreaming, and hoping for our baby Girl sometime in January 2013
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Re: micropreemies

Postby MissingMolly » Wed Dec 07, 2011 11:45 pm

by MissingMolly (41 Posts), Wed Dec 07, 2011 11:45 pm

Thank you for sharing your experiences and your thoughts. I'm so very sorry for those of you who saw your babies suffer only to lose them in the end. I know this might have been the outcome for Molly as well if the hospital had been willing to intervene. It's so hard to know what the right thing is because we can't exactly choose the outcome. Even if they intervene, there are no guarantees. I guess my feelings about this are all tangled up with my general feelings of anger and heartbreak and helplessness. Because everything happened so quickly, I feel like my husband and I didn't have the opportunity to process everything and to fully understand what was happening. I had been having a complicated pregnancy, but when I developed HELLP, it came on very suddenly and progressed very quickly. And since I was in so much pain, and then I was under the influence of the narcotics they gave me, and then I was in shock from being told I would die unless my baby was delivered (and oh, by the way, she'll die either way)--it was so traumatic that it seems like my brain shut down and stopped processing everything. When I look back, it's all such a blur and I think, "Did that really happen?" It feels like a nightmare I haven't woken up from yet. Now I'm trying to work through everything, I'm trying to understand. But it's so painful, and I feel so shattered.

Thank you for letting me reach out, for responding and for trying to help.
Mommy to Molly, who was born alive on Oct. 29, 2011 at 23+3 weeks due to severe pre-eclampsia/HELLP syndrome and passed away 3 hours later. Loved and missed every minute of every day...."If love could have saved you, you would have lived forever."
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Re: micropreemies

Postby holly3372@msn.com » Mon Dec 12, 2011 10:49 pm

by holly3372@msn.com (478 Posts), Mon Dec 12, 2011 10:49 pm

I understand . I think no matter what when you lose your baby you will have so many what if's,so many emotions and unanswered questions around the shock of it all. It's over a year for me and still I have moments that I say what happened,how did this happen. I still remember how very quick it all happened too. I thank you too for sharing and reaching out to us here,you are not alone. xoxo
Benjamin Spider Reeves born 4-28-2010( 1lb 6oz 26 weeks to severe pre-e and Iugr) we lost you after 4 long months in the NICU. You fought so hard,and were so brave.Our first baby .We miss you everyday and love you forever xo

Expecting ,dreaming, and hoping for our baby Girl sometime in January 2013
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