Friday, September 23, 2011

25 weeks pregnant update...

Not flesh of my flesh Nor bone of my bone, But still miraculously my own. Never forget for a single minute: you didn’t grow under my heart, but in it.
   -Fleur Conkling Heyliger



As the hours, days and weeks tick by, and we pass 25 weeks pregnant with Gabriel, the rollercoaster ride of emotions continues. Some days are better than others. Unfortunetly along with the greiving process, and a part of it, is preparing for his arrival.

Birth Plan Appointment
On Tuesday 9-20-11, me and our Doula Marnie went to talk to a woman who runs a support group and also helps women think about birth plans and options. We met at United hospital and sat in their resource center to chat. I got a lot of great ideas and input from her on things we can do leading up to the birth, during the birth and after the birth. Marnie took the information and is going to get together with Derrick and I to go over the options and thoughts in order to put together our birthplan of what we want. This was an important meeting because writing a birth plan in our situation is not easy to do, but is very important. It's going to make a world of difference for everyone at the hospital to know what we want to happen, as well as what we need emotionally to happen during this process.

A kink in our chain of thinking
After the awesome appointment on Tuesday I came home that night and was surfing the internet for support, information and anything I could find useful to me. I got onto a website my stepdad suggested that is www.potterssyndrome.org. There is a lot of useful information on that website as well as a forum for people who are going through exactly what we are going through.

While reading through the various posts, I found one that was from a mom who had our same diagnosis and decided to carry to full term. During one of her routine ultrasounds at 32 weeks, they found 2 working but underdeveloped kidneys, plenty of fluid, and some lung development. Right away I closed my computer and had to process for a little bit. This has been my fear, the fear of always thinking "what if we'd waited a few more weeks?" "What if this baby is a miracle baby and something changes?" I would hate to live the rest of my life saying "what if....".  So after processing in my mind that I probably just read the only story on the entire internet of a positive outcome of this diagnosis, I emailed the original poster to find out more information. They were more than happy to be in contact with me.  They said that all the specialists and doctors they have brought the results to said this is impossible and not happening. You can't sprout kidney's from nothing... this is in fact a "medical miracle". They have no explanation of how that could possibly happen, because it hasn't happened before.  Their baby was born a week ago, is in intensive care recieving fluids until its kidneys develop further, but is expected to live.

This story has made us rethink our situation. Now we feel like in order to avoid living in the "what ifs" we have to give this baby every hope, and every chance we can. We have to give it a few more weeks than we were planning to be sure nothing is going to change. Now, instead of having a zero chance of a positive outcome, we have a 0 chance + 1 in a million that something, anything could change. So we are going to give this baby a little more time, at least a few more weeks than we were planning, just to see, just to get beyond living in the "what if" forever.



25 weeks and 3 days ultrasound
Friday 9-23-11 we went to the Minnesota Perinatal clinic at United Hospital. They scheduled us for a followup ultrasound including growth measurements.  They couldn't find any kidneys still (which wasn't a surprise to us) but baby was kicking and moving and had a good strong heartbeat - which I recorded on my phone. The woman doing our ultrasound shared the story of the loss of her baby 15 years ago and was able to offer some support and advice to us while we are going through this situation. She was more than willing to allow me to record the sound of the heart beating and printed us a lot of pictures to take home. They still weren't able to see clearly enough to confirm the gender, so we are still carefully assuming it's a boy for now. The only change they did see is that the baby, somehow, managed to find a small drop of fluid and swallowed it, so now they were able to find a stomach. This doesn't change the prognosis at all, even though it made my heart skip a beat for a small moment, it doesn't really mean much. Overall, we left the appointment in high spirits - all things considered. We didn't receive any news that anything worse was happening to our little one - he is still growing, although at a slower rate (which would be normal considering no fluid and cramped living quarters) but is weighing in at 1lb 6oz and a week behind schedule. Dr Mills wants me to continue regular OB appointments as normal until this baby is delivered. This is to ensure that I am still healthy, baby is still surviving, and there is still no risk to me (if something were to take a turn for the worst.) As of right now, there is no concern for my medical well-being, just the risk of baby not making it until we decide to deliver.

I still feel at peace with our situation most days. Most of the time I feel strong emotionally and just enjoy each day as it comes. I feel as though I've been working through the mourning process a little at a time, which I hope will make Gabriel's birthday just a little bit more peaceful instead of a chaotic- emotional wreckingball of a day. I hope for his day to be one of peaceful thoughts, loving feelings and celebration of a tiny life that never got to live and experience the world.

4 comments:

  1. Continued love and prayers from NE.

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  2. Just read your blog. So sorry to hear. Thinking about you all

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  3. I'm so sorry for your loss :-( Please know you are helping me as I am going through similar situation! Our son has one, tiny kidney that doesn't appear to be functioning and therefore my fluid is dangerously low! We were told to terminate, and came close, twice (we even got an urn), but have decided to carry him until he is ready. This is by hard the hardest thing I've ever had to go through, this month has been just awful but we are holding on to the 'what if' and praying for a miracle! I'm very scared, this is my first and if course never dreamed it to be anything like this....Much love and prayers to you and your beautiful family! Thank you again for sharing your experience through such a difficult time! Xoxoxo

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    Replies
    1. Continued prayers for you Robin. Hugs.

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