Friday, June 10, 2016

Results and longings


IT"S A GIRL......that's what our announcement would have said. A baby girl was in my belly for almost 10 weeks. When I heard my doctor utter those 4 letters, the flood gates of emotions opened back up. I thought of all the pink clothes tucked away in boxes, and the giggles that would take place between Mayla and her sister! My longings grew, intensified and I wanted that rainbow baby girl back.

When I had my D&C, Will and I decided to have the fetus taken and be examined. We were eagerly awaiting those results daily, anything to shed some light on what had happened. During that time I also had a few blood tests done that came back normal, which we were excited about. Our Doctor called last week and asked if it was a good time to talk. I was sitting in the parking lot of the grocery store, with Mayla already out of her car seat, I wasn't sure if it was a good time or bad time, but naturally said, "good time",  I was eager. 

I knew there was a chance that the results could come back with 'no results possible', and we had been praying for weeks that they would be able to find something out. We knew that it would not help the pain or lessen the heartache, but that it might shed some light for us. No matter what she said, I was trying to focus on Hebrews 13:8, "Jesus Christ is the same yesterday, today and forever"! The one who controls everything!

She first told me it was a girl, and then said that she died from Trisomy 16, an extra chromosome had snuck in where one didn't belong and most all fetus' die within the first trimester. Another pregnancy and another abnormal one. What is crazy to me is that the three pregnancies we do know about, are all totally unrelated situations; Transposition of the great vessels, anencephaly and now trisomy. We never had testing done on our first miscarriage, so don't know that missing piece. Our doctor referred us to see a genetic counselor just to start chatting about the past. The past is not a place to dwell, but a place I feel good to visit and remember in order to figure out how to move forward! Each day I have been working on moving forward, but every so often I feel as though someone tied my shoes together and instead of walking forward I have fallen straight on my face. Those are humbling moments, and the only place I want to look when I am down, is straight back up again! "Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you search for me with all your heart." ~Jeremiah 29:12-13 

So to a genetic counselor we are going. What for, we aren't really sure, what will come of it, we don't know, will anything need to change, we will see what they say. Does God know? Yup. Is that all that matters, Yup. Mayla is still talking about her baby brother, and yes almost still daily. The other day she got a chocolate from a friend and told me she was keeping it for her baby brother. I was rather stern with her that there is NO baby in mommy's tummy and if she were to have a baby brother it would take a long time for him to be able to have that chocolate (basically trying to convince her to let me have the chocolate of course). Her response to that was, 'Well then I will give it to my fake baby brother!" I wasn't sure how I felt by that comment but what I do know is I will make sure I tell her therapist about that one...........Oh Mayla, how we love her!!!!

Speaking of that spunky little thing, she had a big appointment this week; one we had been looking forward to and dreading at the same time for months. Mayla needs regular heart check ups to make sure everything is flowing properly. She was suppose to have an ultrasound almost 1.5 years ago, due to her nature, she didn't cooperate and screamed her face off, we didn't push and decided it would be okay to try when she was older. That appointment came and went months ago and her being older didn't help one bit, but only made the screams louder, the kicking more intense and the heart wrenching more painful when we tried! We knew we had that last attempt and it crushed both Will and I that NOTHING we bribed her with would convince her to lay on the table and let them take a look, we knew that having that failed attempt would mean needing an appointment with sedation.

I had called Mayla's cardiologist, and the sedation team a few times. I made sure they noted everything I requested, and that there was a red flag on Mayla's chart, I needed the best hands on deck and I was fine with being that annoying parent! We went over sedation techniques, what would be needed and how to best go about it. I then brought that to Mayla's therapist, yes 3.5 and she's seeing someone too. They say children can't remember much from being an infant, and I believe that's a fairy tale, Mayla has proven it different.  Her daily anxiety, mostly stemming from how she was born,  a side order of PTSD, then losing her baby sister in a hospital, and then mommy having to go to a hospital for surgery after losing another baby has been a bit much for this sweet sweet child and after working for 10 weeks closely with her therapist we needed this appointment to go as smoothly as possible.

The bonus wednesday morning was Mayla sleeping in, it limited the amount of time at home we had to tell Mayla she couldn't eat or drink. She knew what was happening Wednesday morning, we had been talking about it for weeks, anxiety loves information, so we tried to help set the stage as best as we could. We actually woke her up and the first words out of her mouth were, 'I DON"T WANT TO BE AWAKE!!!". It was so cute and so real and so heartfelt, we laughed, and then she followed it up with tears, 'I don't want to go to the hospital today!!!!'. She had remembered, she got it and her fear was intense. Will took her sobbing body into his and just prayed and prayed and prayed. The transformation was amazing as soon as he helped her give it over to God. She was joyous in the waiting room and played for awhile before they finally came to get her. She weeped and whined a bit, but nothing like appointments past as we were walking back to our room.

She wanted NOTHING to do with the bed that was in the room and opted for Papi's big comforting arms in the hard chair, I gladly took to the bed. There were a few tears in between the talks and quick things that needed to be done, but once again, NOTHING like the past. The nurse was amazing that worked with us and the doctor was a gift from God. She walked in the room and sat right down at Mayla's level and didn't approach Mayla till she had been in our room with us for awhile. They cared, they were patient and they loved on our little girl. It warmed my heart and I was so thankful! We put together a plan and I was astonished when Mayla totally cooperated for the 'fairy dust' nasal spray up her nose. They shot it like a cannon and she SCREAMED! They informed me afterwards how bad it tastes just about the same time Mayla was screaming, IT"S YUCKY, IT"S YUCKY". She was taking a towel and trying to wipe her tongue, I thought she was going to puke, we couldn't get her water fast enough........And then we waited. The drug had about an hour to work before we would need to do an IV. We gave her one that would help her forget what had happened and one to put her to sleep. It was really interesting to watch this drug work over her little body (and broke my heart that this was needed JUST for an ultrasound). We prayed and prayed and prayed and others were praying and praying too! After we gave the Nasal shot as I call it, they had to hook up an oxygen sensor to her foot. The last time I put one of those on my daughters was Arabella in the hospital. Doing it to Mayla opened up a pretty big can of grief, one I hadn't opened, one that felt as if it had no bottom.
Then to see the numbers on the monitor brought me back to when Mayla was just born and we wondered if she would live as we watched the monitor numbers fluctuate, it brought me back to watching Arabella's oxygen levels drop as we were losing her. A simple monitor has changed how I react in life. I stood there just weeping, tears streaming down my face as I watched this 'bigger' girl, still so fragile and still on loan to us starting to cave into her Papi's arms, I remembered seeing him hold her the first time when she was five days old and all that's happened since then. Life is a gift, are you treating yours like a gift? The ones around you?

We were able to transition Mayla and Will to the bed, Will's poor bum bum was a bit on the sore side after awkwardly sitting for an hour plus. The transition was hard as Mayla wanted NOTHING to do with that hospital bed and her relaxed body fought it hard, we squeezed her and tried to comfort her, knowing we NEEDED her on that bed!
She caved and laid there and continued to fight the urge to close her eyes and sleep as she watched Doc Mcstuffins on the TV...we had turned that on well after she had received the 'forget everything sleepy drugs' in an attempt to relax her and get her to lay back and watch. After about 40 minutes her eyes finally closed and Will tried to sneak out from under her; and then in typical Mayla fashion, her eyes popped open which brought back memories from her infancy, she screamed her head off and freaked out because she was laying on the bed alone and he then slipped back under her....the nurse was surprised and like us wasn't sure if she would cave enough. We had 20 minutes left on the clock for her to sleep and to do the ultrasound before we would need to put an IV in her....I stood over her and prayed and prayed. They set the machine up and with Will laying on his side in the most sacrificial position ever to stay near Mayla, they were able to get all the images they needed and her eyes popped open just as they were finishing. It was incredible to see her heart pounding on the screen, and when she turned the audio sound on, the tears started to flow again, running down my cheeks and dripping onto the hospital floor. I wondered if any other mom had left tears in that same spot before. Mine wasn't for the child that lay in the bed before me though, mine was for the child that lay in the grave down the street and the one that had just been scraped from inside me. The heartbeat sound of Mayla echoed off the walls and crawled through my whole body. My arms instantly ached as I wanted to hold my sweet Arabella. My arms longed for the fluttering little heart beat we saw on a monitor similar to the one I was looking at months before. These were parts of grief that snuck up, when I thought about her appointment that day, NEVER did I think about any of these details and prepare myself for them. I felt like my whole body had been whacked by a 2X4 and instantly I felt drained.

Notice Arabella bear close by, she never left her the whole time.



Mayla woke up and right away said, 'hey what happened to Doc?" I looked at the nurse and said, 'really, they will forget everything medicine?'. He had this perplexed look on his face like, 'wow that's pretty impressive'. Mayla once again showing her uniqueness.

Mayla insisted on walking when we left, she was so pumped to get ice cream.
However we won that battle and carried her, however when we did let her down I have NEVER laughed so hard at a toppling toddler as we did our drunk little sailor. She was providing quite the entertainment and i'm bummed that we were so busy laughing at her that we forget to video the slurring and slow mo speech that was coming from her mouth. She crashed when we got home and I snuggled up next to her. The morning had left me emotionally drained and to feel the warmth of her relaxed body was a gift I cherish. She woke up first, sat up, looked at me and gave me the hugest smile. I was so proud of my brave little warrior girl.

I was gifted a WONDERFUL daily devotional called 'Streams in the Desert' and on the day we lost baby Feeah (4th Baby), it read, 'Be strong and take heart. Psalm 27:14
Be strong, He has not failed you
In all the past,
And will He go and leave you
To sink at last?
No, He said He will hide you
Beneath His wing;
And sweetly there in safety
You then may sing.'

Our rainbow has faded, and every day I look into an empty nursery room I'm reminded of the losses. But each day I wake up, I'm also reminded of God's love. I'm reminded that his Love for me and Will and Mayla is MORE than I can fathom. I'm reminded each day in the little things that his ways are not my ways. I need to trust him in these little things every day so that when the big things happen, or keep happening, i'm ready for them. You ever try to balance on a teeter totter right in the middle by yourself and keep it perfectly balanced, it's rather hard. It's hard to balance right in the middle of our relationship with God, you're either rocking towards him or away from him, and I would much rather be rockin' his way. He is bigger than anencephaly, he is bigger than miscarriage, he is bigger than difficult children and he wants to be bigger in your life, what's holding you back?