Thursday, May 18, 2017

Noah's birth

Noah... that name has had so many different meanings to me throughout my life with special people, but right now it is most precious.

I had much more leeway with this pregnancy because of Noah's diagnosis so while I have always gone to 42 week or a bit longer, my midwives had no problem with going 43 or 44 weeks or more this time.  I really wanted to see what my body would do on its own since the last two times I had to break my water to get labor started if I wanted to stay with my midwives.  I decided at 42 weeks though that the anticipation of the unknowns with this baby was getting to be too much for my family.  So I decided to only wait until 43 weeks and the day after that to go in and have my water broken.  I had made the decision, but was still unsure going into it if it was the right one.  When we got to the birth center, they broke my water and there was light meconium which got a bit darker throughout the day.  It made me feel better in a way because I knew that meant it was time for him to come out.  I was so sure that labor would start, it worked like a charm both times before.  We stayed in SB, walked on the beach, had lunch with a friend, etc...  nothing happened.  Went home, had dinner with my sisters who arrived that day, nothing happened.  Went to bed, nothing happened.

I was quite upset in the middle of the night thinking that something was wrong, I couldn't understand why this wasn't working with such an advanced pregnancy.  Josh couldn't sleep either.

The next morning (Sat, April 29th), we went back to the birth center to talk further.  They mentioned a medicine called cytotec which works well in these situations, but I had regained my faith and wanted to wait 24 more hours to see if I could still start labor on my own.  I told them that is what I wanted to do, but that I thought we should check his heartbeat one more time, I had only felt slight movements in the last two days.  So she did a belly check, she thought he was lower, even though my cervix had not changed in many weeks.  Then she did a check for his heartbeat.  Every time we had checked his heartbeat regardless of how much movement I felt that week, it was always very strong. My midwives always found it quite easily.  But this time, it wasn't there.  Even though my midwife did a very thourough check twice, I knew when she checked the first place that he was gone.  Maybe that is why I asked for the heartbeat check that morning.

That news changed everything because for a body to start labor when the baby is not alive can take much longer to happen and eventually there is risk of infection to me.  So we began a course of labor inducing medication.  We waited at the birth center for hours and I did enter early labor.  I labored there all day, but Josh and I were already dealing with the grief of losing our baby.  I mentioned something about just wanting to go to the hospital to handle this with medication because the emotional strain was enough.  One of my midwives encouraged this and after talking to some people I trusted, I decided that I didn't want to face the possibility of much more difficult induced contractions.  So a few hours later, we went to the hospital.  When we got to the hospital things started to change.  I started to shiver uncontrollably even though I felt warm outside.  Nausea started and things just seemed out of control.  I think it was a side effect of the medication, but I had also begun to spike a fever and get an infection.  If I had stayed at the birth center, I would have been transfered at that point.
The contractions coming were manageable for a long time and I told them to wait until I asked for the epidural.  Everyone at the hospital was wonderful and my midwives Laurel, Alice, and Alissa were all there as well as was my wonderful friend and doula Genevieve.  They gave me a second medication that meant I had to stay in bed lying down and then the contractions went from manageble to feeling constant with really tough spikes which felt like those were coming fast too.  At one point I asked for the epidural, but of course the anestheoligist was at home and could not make it there for about 45 minutes.  By the time I got the epidural and a catheter was placed, they checked me and I was fully dialted.  When they placed the second medication, I was still at one centimeter, which meant I went from 1 to 10 in a little over 2 hours. Maybe that is why I was shaking.  I pushed him out in 20 minutes.  He was born at 10:48 pm. I think Josh may remember some things differently than my timing on all of this, but regardless, it felt very fast.  I was in shock when they told me I could push.

Things I remember are that he was very tiny, his placenta was tiny, and that he looked like he had been gone for a while.  It was an overwhelming stream of emotions from that moment on.  After holding him for a while, Josh and our team of angels (the only word close enough to explain my midwives and doula) washed and dressed him.  He stayed with Josh and I overnight and his brothers and many family and friends met him in the morning.

I don't want to share everything about our time with him or our goodbyes, but I will say that Noah has changed me for the rest of my life.

He has changed everything.

Living without him is much harder than I could have ever imagined.  I miss him so much and am so thankful he chose me to be his mama.  He will always be my little bird.

Monday, March 6, 2017

Baby Blessing

About a month ago the mamas in my school, all women I would be honored to call my friends, hosted a baby blessing for me and Noah.  Three of my friends from LA also came to celebrate with me and to give me a beautiful gift of pregnancy photos.
There really are no words to describe what that day was like.  Usually having all that attention on me would make me quite uncomfortable, but we entered into a circle of words, candle lighting, and offerings for Noah that continue to leave me without words to this day.  I can say two things about this day though:
1.  It really felt as though all 25 of us had entered into the same space for almost three hours.  There were no distractions from what was happening and I felt at peace and truly held with love for so long. I really did not want it to end.
2.  It was quite an honor to hear how Noah was affecting all of them, what he brought to them, and how he had changed them.  What a special person who can do that before he is even born,

I am almost 36 weeks, full term on Thursday and I am nervous about what is to come so this will likely be my final writing until after he is born.  Thank you again for sharing with us in his journey.
Here are some pictures from the blessing and the photo shoot.  (Thanks Melissa for capturing such a wonderful day!)



Sunday, January 29, 2017

Noah means rest and comfort

We named him Noah...  
I have seen many meanings for his name including rest, comfort, freedom, and popular one.  He is definitely living up to the last meaning so far.

We have been preparing for his arrival in many ways.  We saw a pediatric cardiologist in LA and while his heart has problems, it is relatively healthy for a Trisomy baby.  Ultimately the baby's heart will not be an immediate problem after birth.

We have met with a neonatologist at Cottage Hospital and had a NICU consult even though I think the idea is to stay away from the hospital in most scenerios.

We now have midwives and an OB in case I need to go to the hospital for any reason,  It feels like I am always seeing someone lately,

We are working on logistics that include hospice, funeral homes, and random questions like who signs the death certificate if the baby dies at home.  I sometimes have no idea where to start, or what to ask.  While it is overwhelming, we have an incredible amount of support and many who are doing the actual work for us.

The hardest part has actually been navigating the conversations with those around us.  I mentioned in the first blog post that I might not want to talk about it.  It is quite hard to have to tell the people when I see them around town mostly because it feels like I am assaulting them with bad news.  This is why I had sent out massive emails and posted it on social media.  It was much easier to tell people that way.  And most people know now.  It is still, however, a strange reality to live with.  I believe that often our friends and family don't know what to say or if they should mention anything at all.  Others mention it all the time and my sister (sweet love that she is), checks on me a few times a day.

The other part of course is that Josh and I handle it quite differently and what we need from others is different.  I know that for someone outside the situation, it has to be quite uncomfortable and many are unsure what to say or do.

For this reason, I wanted to make this update about just that.  I wanted to let you know how I am, what I am wanting/needing, and how to be with me.

What I want  you to know about my health:  This is a normal pregnancy for me in every other way. Normal for me though takes into consideration that I have a muscle disease called Myotonia Congenita.  It is mild form of muscular dystrophy which is relatively easy to live with except when I am pregnant.  Getting my muscles going from a resting position is very difficult and I can get winded and tired easier.  So this is one part that is making my job and taking care of the boys much more difficult.  If I look like I am struggling with getting up and down, it is because of this and not that I am a drama queen (not that I don't have my moments).

What I want you to know about our decision to continue this pregnancy:  A few people have in one way or another implied that we are making the right or brave decision in this situation.  While I understand again that others do not quite know what to say or are maybe just being kind, I really could not disagree with that more. We are making the right decision for us.  I was very close to ending this pregnancy.  I wanted it to be over and to grieve and move on.  I sometimes still feel this way.  If I had made that choice it would have also been right and brave.  We are simply dealing with what life has given us as all of you would do in this situation as well and the decision we have made comes with its own joys and struggles as all decisions do.  I am grateful I could make this decision for my body and my baby.  I believe all women should have the right to do so.  If any decision had been forced on me when it wasn't the right decision for me, that would have been unbearable.  I feel so sad for the women who have been in that situation.  So I want to make it clear that our decision to continue this pregnancy is in no way taking a stance on abortion.

What I want to make clear about how I handle things is this:  I have reached a place where I am comfortable talking about it for the most part.  I actually need from my friends a person who can listen in a matter of fact way and even help me problem solve or debate or sometimes listen to the joy that comes with this hard situation.

For example, just recently, a friend had done some work on funeral homes for me and told us that our local funeral home does not charge for transport, cremation, or any other service involving babies and children who die.  I cried for almost an hour when I found this out, but most of those tears were ones of joy.  I was reminded how loving and kind people are.  Mostly I was reminded that there are complete strangers who will come to your side when things are really rough.  As a human species, we all understand suffering and grief and what a beautiful thing that is.  I was happy that all families who have to bury their children get this kindness and this relief.
I want people to share in those small joys with me, to not necessarily be horrified in that moment that we have to call funeral homes about our child, but to stand with me in the feeling of oneness that I felt towards my fellow human being and to recognize the incredible gesture of kindness.

Maybe for those who have not been handling this up close and personal, this is too much to ask.  I can understand that as well.

I do want you to know that for me, it doesn't have to be an off topic conversation anymore and I am happy to answer questions about Noah.  Mostly, know that if I bring him up it is because I want to talk with YOU about it, that I value your perspective, and that you don't have to walk on eggshells around the words you use or the feelings you have about it.  Many people cry when I talk to them about it, why wouldn't they? The entire situation is tragic.  And Death is part of life.  I am not sure what life would be worth without it.  It is ok to be matter of fact or to help me see the goodness in all of this.  Mostly, I want Noah to be recognized for whatever life he has in me or outside me and what these situations bring to us all no matter how hard it is to handle at times.

We do not need anything very specific likes dinners or cleaning help right now.  We do need help with childcare from time to time and I forsee needing much more of this specific help once the baby comes especially if he sticks around for any length of time.  If I am caring for a terminally ill baby, I will let you clean my house I promise 😀.  For right now, just keep doing what you have been doing and telling us how much you care.  Thank you for providing the comfort part of his name.
We love you too!
30 weeks and counting...