Friday, October 2, 2009

The beginning of the end...

This past Sunday my water broke – at 20 weeks and 1 day – and we ended up at Labour & Delivery until Monday evening. What I happened to us is called PPROM, or preterm premature rupture of membranes.

I cannot even begin to describe how difficult, painful and confusing the past few days have been. Everything has been completely out of our comfort zone, and we are terrified about what the future holds for us and our baby. I'm not even sure where to start with all of this, so bear with me. This post is going to be so long. . .

I started experiencing contractions on Sunday, and gradually throughout the day they were getting worse. I had spoken to my doctor, and we were preparing to go to the hospital when my water broke. It was while I was sitting on the toilet for one last pee before heading out to the car. My contractions completely stopped after my water broke.

The good news is that our baby is still alive. The bad news is that there is absolutely NO amniotic fluid left inside of me anymore. Every time I stand up to go pee, what little fluid has replenished itself leaks out again.

We met with a perinatologist at the high-risk clinic on Monday. While they tried to be as sympathetic as possible, the news is not good. Basically, chances are "slim to none" of having a live, relatively healthy baby after all of this. Upon prodding to put a number to such a fluffy proclamation, they told us less than 10%.

We were given one of two options by the perinatologist: (1) terminate this pregnancy by inducing labour now or soon-ish; or (2) waiting and seeing what the future brings, which will likely bring either death or significant disability. Debating the options was agonizing. Not only did I want to make a decision that sat well with me personally, but I wanted to make sure that Mr. Legalosaur's wishes were also taken into consideration. I was so devastated and sleep-deprived that what the doctor was saying to me didn't make much sense. I must have sounded like a complete idiot, but I had to get him to repeat things over and over again because I couldn't keep anything straight in my head.

Here's what I now understand from our appointment with the perinatologist. . . Right now, I could go into labour at any moment. Labour before 24 weeks means certain death for our baby, as they will not intervene or resuscitate. Even if we can hold on until 24 weeks and 1 day (most women go into labour within 1 week of their membranes rupturing, although it is not unusual for women to hold on for 4-6 weeks after rupture at 20 weeks, it is not common), the first thing they will do is weigh the baby. If the baby weighs less than 500g, they will not intervene or resuscitate. If the baby is between 500g and 750g, they will make an evaluative decision based on the baby's responsiveness.

Best is if we can hang on to 25 weeks, and have a baby that weighs over 750g. But even if we make it to this benchmark, there is pretty much a 70% probability that this baby will die soon after birth due to pulmonary issues that are caused by a lack of fluid. Fluid is necessary for the baby to breathe in to help mature the lungs. Without fluid, the lungs are tiny and hard and will not be able to expand and fill with air. So, while other babies born at 25 weeks may be able to breathe after getting steroid shots, ours might not because he or she would have spent 5 crucial weeks of development without the benefit of fluid.

We also need to be concerned for infection. Fluid is crucial to protect the baby from infection. Not only can infection be fatal to the baby, but because it can also be very dangerous to me.

And, finally, if we are so lucky to fit in the small number of babies that survive after birth, there was a laundry list of disabilities that were listed off to us as likely or probable: club feet and hands, deformities to the head, brain damage and mental retardation, cerebral palsy, blindness, deafness, etc.

After much discussion and soul-searching, Mr. Legalosaur and I have decided to wait and see. This baby has been such a fighter throughout this whole pregnancy. To induce labour now and sign this baby's death certificate does not sit right with us personally. We were told over and over again by the doctors that we need to make the right decision for us, and not to worry about what other people would think or would do. We also need to make sure that if we do want to wait and see, and the baby survives, that we think about the lifetime of medical appointments and disabilities that we would have to deal with. Are we ready as a couple to care for a child with demanding medical needs? I don't know – this is not something you seriously consider when you look at each other and decide to start a family. What I do know is that I could never live with myself if I let this little fighter go. Luckily, Mr. Legalosaur feels the same way.

I am not ready to say good-bye to this little one, not yet.

A couple of things that completely threw me for a loop. First, apparently PPROM is quite common where a woman has had continuous bleeding in a pregnancy. I had no idea. Secondly, if this baby dies in utero and is born still before 25 weeks, it is possible that they will not be able to tell us whether the baby is a boy or a girl. What happens, I guess, is that the baby's body gets dehydrated and babies look very similar at this stage. We had chosen not to find out the gender of the baby because we wanted a surprise. Unfortunately, if you tell the ultrasound tech you do not want to know the gender, they do not even look for it in your scan, and they take no pictures of the baby's sex organs. So, despite my desperately wanting to know NOW what this baby is, there is no way for us to find out. We will just have to hope that if he or she is born still that we will be able to see the gender. It breaks me apart to think that we may have lost our chance to know whether this is our son or our daughter.

We will meet with a neonatologist next week to discuss in more detail what types of preemie issues we might be dealing with, in addition to the specific issues that will arise from the lack of fluid.

If you have made it this far, thank you. I may sound fairly coherent in this post, but the reality is that I am broken and I can never be repaired. I have cried buckets full of tears. On the one hand I am trying to cling to some hope that we will beat the odds and be one of the success stories. On the other hand, the realist in me is preparing for the death of our child and we are exploring burial options. And yet another side of me is trying to research as much possible so I understand the disabilities that we may be facing if this baby proves to be the fighter that he or she has been throughout this whole pregnancy. We are scrambling to buy some micro preemie outfits, because even if our baby is born dead or dies soon thereafter, I do not want him or her to be naked.

This all just feels like a bad dream that I cannot wake up from. Mostly I ask myself "why me, why us, why our baby?" I feel like I'm being punished for something, but I'm not sure what. I am so angry at my body for failing this baby. Unfortunately, I don't think there are any answers or any comfort that I can find in this situation.

I'll keep you updated as and when I can, but I don't know how often that will be. Pray for us, we need all the help we can get.

24 comments:

  1. My hearts breaks while I read this..I will be praying for you. Miracles do happen *hugs*

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  2. My mother makes outfits for cases such as this if you should need one. If you would like, please contact me at mmwoloszyn at hotmail dot com so that I can get you in touch.
    Best wishes for comfort and peace at this time.
    -Michelle

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  3. I'm sending prayers your way....

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  4. I am so sorry. I have no words. You are all in my prayers, and will remain there throughout your journey.

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  5. I'm so, so sorry. I'm praying hard for you and your baby. This hits particularly close to home since our due dates are so close. I'm praying your baby can hold on until 24 weeks. I've seen some 24 weekers do remarkably well, all things considered.

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  6. I am still sending you hugs and prayers.

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  7. Oh no... My heart is breaking for you and your husband. Sending hugs to you both and kisses for your little fighter baby...

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  8. I am so sorry! My thoughts and prayers are with you and your family. I just can't think of anything else to say right now other than my heart is breaking for you.

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  9. Oh sweetie...I know there's nothing I can say to make it better, or even to express how very sorry I am that this is happening. I cannot begin to imagine how devastated you must feel right now - I wish with all of my heart that there was something I could do. You and your husband - and your wonderful little fighter - are in my thoughts and prayers.

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  10. My heart breaks reading this. I'm so sorry that you and your family have to go through this. I'm keep y'all in my thoughts and prayers.


    Happy SITS Saturday Sharefest.

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  11. I am so proud of you for deciding to let the process run its course! You're giving a person a chance at life by taking the hard way out. That is both rare and admirable! I know it hurts now, and I can't begin to pretend I know what you're going through, but you and Legalosaur will make it through this and you will heal, whatever may come.

    Thanks for visiting my blog! It's always nice to meet other virtualosaurs.
    Love, Amandasaurus Rex

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  12. Wow... I'm so sorry for this. I found your post on SITS and it's so strange how certain people can be connected. I hope it's okay if I share a quick story with you.

    After a completely normal pregnancy, my daughter's umbilical cord ruptured during delivery. She was stillborn, and accidentally recesitated (spelling is wrong, sorry). There are a million things that shouldn't have happened to make her live, but the stars aligned and for some reason each of those people/things were in place at that time. Despite over 30 minutes with no pulse and 2 months in the hospital (where she was predicted to be in a vegetative state for the rest of her life), she is home. AND ALMOST COMPLETELY NORMAL. I'm sharing this with you not to give you false hope but to encourage you to wait and see. They wanted to end life support for her, but we stuck it out and let her decide. She decided for us, all right! You should see her today... there are photos on my blog...

    I wish you the best of luck, no matter where this journey takes you. I've been in your shoes and want you to know I'll say a prayer for you. There are really no other words to describe how sad I am for you, so just know you are in my thoughts.

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  13. I hate that this is happening.
    I found something that may help, or at least let you feel more in control.

    http://www.examiner.com/x-24267-Dallas-Pregnancy-Health-Examiner~y2009m9d26-Healthy-Starts-2nd-annual-Infant-Mortality-Summit

    at the bottom of the page is a link to the contact person. They maybe able to help you find the best Dr through this situation. It sounds to me like your Drs have just about given up and you need hope. Hopefully that person will be able to help.

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  14. Oh Leagalosaur...this must be an incredibly difficult time for you & your H. I admire your strength. You guys are in my thoughts & prayers...hoping for a miracle for you.

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  15. I am sorry and will say prayers for you

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  16. My heart is breaking for you, your husband and your sweet baby. You all are in my thoughts and prayers. Miracles DO happen.

    My grandmother's water broke when she was 5 months pregnant with my aunt. This was in the mid-1940's. They basically sent her home on bedrest with no real options. My aunt is alive and well and in her 60's with three grown children and 4 grandchildren. Aside from some susceptibility to pneumonia and other respiratory ailments she's been quite healthy since overcoming her obstacles at birth (when my grandmother was just 7 months pregnant). I pray that a similar miracle awaits you and your LO.

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  17. I am so, so sorry to hear of the troubles you've been through and are continuing to go through. My heart goes out to you, your husband and your little baby. I read your entry to Mr. Citysaur and couldn't keep the tears from entering my voice. You are in my thoughts and prayers.

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  18. I'm so sorry to hear this. You and your family are in my thoughts.

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  19. I'm so sorry. Will be keeping you and your family in my prayers.

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  20. I just ran across your blog...I went through a very traumatic 29 weeks with our son and he was born still this past July. If you ever need to talk about anything with me, feel free. I am praying!

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  21. Oh Legalosaur, I am so sorry to hear that you are going through this. Just know that all of us 'saurs are here for you in any way we can be. My thoughts are prayers will be with you and your family.

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  22. My water broke at 19 weeks due to a chronic placental abruption. so much bleeding wore through my amniotic sac and I lost all amniotic fluid. I went into shock I lost so much blood. I was told at the emergency room that my baby was dead. She wasn`t and I didn`t let them take her like they had wanted to. I was contracting and they wouldn`t stop them...luckily they stopped on their own.

    I continued bleeding, kept having ultrasounds and still no fluid. 20 weeks, miracle I`m still pregnant..no fluid, not viable and still having contractions more and

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  23. more. I still would not let them take her. 22 weeks, another ultrasound, drugs to stop my pain and baby still alive...no fluid... 23 weeks...still pregnant beyond belief..no fluid, contractions still. Convinced them to send me to a hospital with a nicu via ambulance. Was told there to stop being dumb pretty well and abort. Baby would never live no matter how far I made it..lung would never expand due to lack of fluid. Got a bladder infection, started contracting..starting crying that my teeth hurt and got 4 of them pulled so I could get antibiotics because they refused me because they wanted it to take its course. wisdom teeth.

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  24. 24 weeks..another ultrasound near 1 cm of fluid...I get to get my steroid shots...now fast forward this through countless transfusions and thousands upon thousands of tears and so many bad times and scares. even at 26 weeks told to terminate. Fast forward to 29 weeks. Irritable uterus. Start bleeding a lot. hooked up to the monitor for 48 hours and npo. the monitor causes me to go into labor...not the PPROM. Bracey was born 1210 grams with IUGR at 29 weeks. She is now 17 weeks old, home and perfect. On the 10th percentile for her age at 17 weeks...not her corrected age. please feel free to read my blog. you are in for a long hardhaul, but dont give up because they say there is no chance...there always is www.myabruptionstory.blogspot.com

    hope this helps. my email is cindypartridge@gmail.com you can email me any questions or concerns.

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