Thursday, June 30, 2016

The Specialist

The night after we got the text we got many messages back from family sending love and support.  Tyler, Teresa's husband, suggested we have a family fast on Sunday.  It was very sweet to suggest and everyone agreed.  I still could not stop thinking about my friend Heidi and her girl, so I sent her a message on Facebook briefly explaining what was going on.  A few minutes later she sent a message with her phone number telling me to call.  I texted and told her I could call her when Peter was down for a nap.  The whole morning just seemed dazed.
I got Peter down and got ready to call Heidi.  I'm not going to lie, I was scared and felt very dumb calling.  What was I hoping to hear?  Took me a minute to finally get the courage to hit send and make the call.  She was very kind and we cried and talked together for well over an hour.  She shared about her pregnancy and what she had gone through.  They didn't even find out until she was closer to 18 weeks.  We talked about things she was experiencing with her girl now and what life had been like up to that point.  Honestly, some of it was reassuring and some of it scared me to death.  How was I going to do this with three other kids needing attention and still so young.  Heidi told me a little about what the specialist appointment would be like and what they are looking for.  She said the biggest things they will check for is to see if the heart developed (I guess this is a very common organ that doesn't develop right with Turners), check to see if there are other organ issues or more fluid.  She said that this was a very important appointment and would explain a lot about our girl's situation.  She said to pray the doctor would be able to get good pictures and be able to see all that they needed to.  She was surprised they were having me go so early since she is very tiny still and seeing her organs may be hard (I'd be about 13 weeks at the appointment).  She offered me some advice of how to survive.  She said every day is going to be hard because you just don't know what is going to happen.  She was told every appointment that her baby would probably die.  Heidi just kept saying, "take it one day at a time."  I wasn't quite there yet, because each day felt so overwhelming I didn't know how to survive ONE day without being a mess.  She said a few things that really stuck out to me.  The first, that this little girl was my daughter, but she was also Heavenly Father's daughter and He loves her too.  He feels for her the way I feel for her.  Holy cow, just put a new perspective for me on our Heavenly Parents.  I feel this crappy, how must They feel to see her struggling.  How must They feel watching ME struggle.  It would break my heart to pieces to watch Ada or Rue experience what I feel now.  I'm not alone in this aching!  Heidi also suggested reading the Book of Mormon again.  She said she started it when she found out and planned to finish before her baby was born.  That is what she did when she felt alone, scared or hurt.  She read from the Book of Mormon.  I got a generic (one of the black paper back one's my kids usually take) and started.  I would like to finish before she is born, but my goal is just to read with this situation in mind.  I am looking for peace for this situation and guidance.
Doris called me that afternoon and it was a VERY sweet conversation.  She is 10 years older than me and has basically always lived far away, but this call meant so much to me.  She has 8 kids and home schools them.  I can't even begin to imagine how crazy life is, but she took the time to call me.  I was able to share most of my information that I knew without crying (first time).  We continued to talk and share about the situation.  We cried together and it just was so comforting to have my sister's love.  It is hard to not think "why me?"  I have SO many cousins and this baby will be like 104 GREAT grand baby for my Grandma Joyce, and yet I think this is the first baby to have genetic issues.  Why us?  I'm the ONLY one of my immediate family to have a baby with any problems.  Why us?  Doris was so reassuring and so comforting.  I'm sure it had to be hard to call.  I know I'd be scared to call.  It was very sweet and very appreciated.
Over the next few days Keith and I felt that we really needed to decide on a name.  We didn't know what was going to happen.  We'd never officially picked a name this early, but we started talking about it more.  All week I'd been thinking Keith and I needed to get to the temple.  I wasn't sure what to do because we'd just gotten back and didn't want to ask family that had already had our kids to have them again.  I thought about having us take turns going, but I REALLY wanted to go with Keith.  Finally Saturday morning Keith remembered that someone he knew was going through for the first time.  I posted on Facebook that we were looking to see if anyone was free.  I hate asking people to take my kids.  My aunt Diane replied that they could.  They are always so kind and ready to help out. I wish I could be more like that.  We went to the 4:30 session.  It was wonderful.  I hate to admit it, but I think it's been 5-6 months since I've gone.  It was a bit emotional for me and I was a bit of a crying mess (which is embarrassing).  We were sitting there together at the end and Keith turned to me and said we get to be in the Celestial room with our little girl.  It was a beautiful trip and Keith said he felt we needed to pick a name.  We picked up the kids and I feel like I couldn't quite adequately express just how grateful I was for this little service.  We needed to be there, I Needed it.  It was perfect and wonderful and peaceful.
Sunday we fasted and cried.  We talked more about names.  I explained to Keith that as soon as we'd found out our baby had a problem (May 27th) I had a strong inclination it was a girl.  I was right.  At that time of anguish I remember having thoughts in my head about "her" and in my head I always called her Penelope.  It was one of the names on our "list" but wasn't one of the top options.  Keith said he liked it.  We do scripture names for the middles name so we came up with a few options.  We liked Penelope Eve and Penelope Ruth.
Monday morning our appointment was at 7:30 (be there at 7am.  We dropped the kids off with Melissa and headed there together.  We got a little lost and I kept calling the office with no answer.  Finally found it (hate huge medical complexes) and got in.  Filled out millions of paperwork and sat for what seemed forever in the icebox waiting room.  Finally they called us back.  Heidi has said at her specialist ultra sound the tech wouldn't explain anything.  We lucked out and had a VERY sweet woman.  She pointed things out and showed us what was going on.  I'd made sure to drink a LOT of apple juice before so that she would be moving and hopefully they could get the pictures they needed.  She was jumping all over the place!  The lady showed us the hygroma and explained it was her body fluid in there not amniotic fluid and that it is common in chromosomal issues.  We told her we knew already she had Turner's syndrome.  We could see her heart and it looked like there were 4 chambers and pumping well.  She measured her brain and we could see her face.  Then she started pointing out little dark lines she was seeing in the baby's chest.  The dark lines were fluid.  She appeared to have hydrous (fluid) around her lungs, stomach and heart.  Then she showed us a little blob near her belly.  She said that the baby's intestines did not develop inside her abdominal wall.  They were on the outside of her body and attached to her through  little hole in her abdomen.  We continued to look and see her moving.  Then it was over and she said to wait there and she'd get the doctor.  She was gone what seemed forever and then poked her head in and said they were waiting on my genetic testing to be sent over by my OB.  I called my OB office and told them I was sitting at my specialist and why had my results not been sent over.  The lady said she was working on it right then.  We sat for a while more, just stewing in our minds.  Then the ultra sound tech finally came in again and said we could go to the doctor's office.  As we walked out she patted each of us on the back and said "good luck" all sad like.  Yeah, not comforting and I knew something was up.  We walked into the doctor's office, Bob Johnson.  He looks somber and there is a lady in the corner with paper and pencil taking notes.  He explained she was just a nurse sitting in.  My heart panicked.  I knew it wasn't good if all this was happening.  He started talking about Turner's and what the normal statistics are with survival.  He talked about the things the tech had pointed and and then said that it seemed with all these things working against her on top of the Turner's he really felt that she would be in the percentage to not make it full term.  His opinion was that she would most like "terminate" by 18-19 weeks.  He just felt that there were too many different things going on that she just wouldn't be able to stay alive.  For the first time I started to cry in a doctor's office.  I'd managed to keep it together, even if Keith cried.  This was just so final sounded.  He said he was supportive if we wanted to terminate now, or if we wanted to wait it out.  He would respect our decision either way.  We said of course that we wanted to wait it out.  I'd never lost a pregnancy so I asked what I should expect.  He said to continue with my life and exercise same as normal.  We would start going every week to my OB to have ultrasounds to "check for life".  He explained that after 14 weeks they wouldn't do a D&C, but that I'd be induced and deliver her.  He was very kind and compassionate and not cold.  He said to just enjoy this time and that my OB would be in contact to set up weekly checks.  He shook our hands and we headed out. I barely made it out the door before I lost it.  Just horrible, wrenching sobbing.  I know we passed a few people in the hallways, but Keith guided me out.  I don't know how he could keep it together, I was a wreck! We drove in silence while I sobbed.  Finally managed to calm a little and say that I liked Penelope Eve.  He agreed.  Somewhere on the freeway I managed to turn to Keith and say that my heart was very broken, but I felt peaceful.  I don't know if that makes sense unless you've experience something like this, but it was weird.  I ached SO much, but wasn't scared, angry or worried.  It just felt ok, just sad.  We picked up the kids and went back to the house.  We had them sit down on the couch and Keith tried to tell them what we learned.  Finally he broke down.  He'd remained SO strong while I blubbered, but now he couldn't.  Together we explained that the doctor found some other problems with our baby and he didn't think she was going to make it.  We all cried together and showed them the ultra sound pictures we had.  We told the girls we picked the name Penelope Eve.  haha, Rue couldn't figure out how to say Penelope.  Ada was thrilled with Eve (she wanted to use that as the baby's first name).  We will use Penny as a nickname.  Keith had a meeting he had to hurry to and I was worried about him having to somehow still function.  He left and I had no motivation for anything.  I just sat on the floor with my kids and watched them play.  I finally got the emotional strength to message the family and let them know what we'd learned and share her name.  I also texted Heidi to let her know.  She called right away to say not go give up hope yet.  She reminded me that they told her she would lose her baby every appointment.  Mom and dad were in Minnasota visiting Phillip and Julie, but they called to just share love and see how I was doing.  The day was obviously rather gloomy and tearful off and on ALL day.  Keith got stuck at work longer than he wanted but still came home early.  I told him I needed to get out and clear my head.  He stayed with the kids and I went over to the gym.  I needed to run, hard, and just clear my head.  It was very helpful and I needed that.  Really, don't remember tons from the rest of the day.  Everything was just cloudy and dreary in my mind.  We have the doctor's opinion, but truthfully it's not in his hands.  It is in our Heavenly Father's hands and we just have to be faithful that he knows what is best.

No comments: