Almost 365 days have passed since I laid eyes on one of the most amazing gifts. Almost 525,600 minutes have passed since I held one of the most beautiful babies in my arms and almost 31,536,000 seconds have passed since Arabella Nani Ellis took her first of many many many unexpected breaths!
It's absolutely crazy to think that we are approaching her one year birthday, my heart and emotions know the day is coming. Grief spikes at the one year mark, I thought I would be exempt. Not because I'm so tough and strong, but because of all the healing that has taken place, as the days continue on though, I realize that I'm not exempt and that's okay. I feel like I'm not only grieving the loss of Arabella, but the loss of Baby Feeah, and the months that have gone by with an empty womb and empty arms. I feel I was created to be a mother, and when the clock keeps ticking and I'm trying really really hard to do what I can to help the process (and yes it's fun, thank you God for inventing things the way you did, wink wink) it's tougher on me emotionally. Mayla is adorable, but she wears her emotions on the outside too (poor Will having to deal with two of us), and when she lies in bed at night and we are praying for God to open mommy's womb for another baby and you see your three year old sobbing because she wants a sibling, it's really really hard! Grief has been real, raw and JUST like the books say, random!
I've been thinking for months about her one year birthday, and playing around with a lot of ideas, but this idea that I've borrowed from a dear dear friend of mine SETS ME ON FIRE with excitement!
You're invited to celebrate Arabella Nani Elli's birthday with us! The theme we learned during Arabella's life and death was to #CELEBRATEEVERYTHING! It's tough some days, but we are doing it! And we would like your help to keep it going! Since Arabella isn't here to shower gifts upon, we invite you to bring us gifts, in honor of Arabella, that we will forward on to a place that is near and dear to our heart, Alpha Women's Center (https://www.alphawc.org/). I have been there a couple times and it's an amazing place. They care for pregnant mommies, unplanned and planned, and care for the babies and the needs they have after birth. Part of their vision is "Changing Hearts, Changing Lives. Changing Generations". Since losing Arabella, this place has meant more to me; Those going the distance to help others realize that every life matters!
SOOOOOOOOOO It's Party time.............
In remembrance of Arabella on her birthday, August 19th, we will go to Alpha Women's center and drop off the gifts. I can not tell you the giddiness I have spiraling through my body at the thought of this. Gifts can be dropped off to our porch (or inside my home if I'm home and maybe we could have cookies together and chat), mailed to me, or I can pick things up or meet you somewhere! THIS IS GOING TO BE FUN!!!!!!!!!!!!!!! You can PM me if you are interested in coordinating a drop off or for my mailing address. Email address is keri.ellis22@gmail.com in case you want to communicate that way!
So what can you give? Good question. Here is the list: SO FUN!!!!!!!!
NEW AND USED ACCEPTED:
•Children’s clothing – preemie to 6T
•Maternity Clothing and Nursing Bras
•Winter coats, hats, mittens, scarves, boots for all sizes
•Infant Bedding
•Burp clothes and Bibs
•Socks and tights for babies and children
•Children’s bath towels, wash clothes and bath toys
•Toys and books – new or like new for our Christmas Shoppe
•Batteries any size to repair toys
•Children’s utensils, dishes and Sippy cups
•Back packs and school supplies
NEW ITEMS NEEDED:
•Diapers size newborn-6 (most needed: size 3, 4 and 5)
•Gift cards to Target, Staples, Office Max, Meijer, Family Fare, Gordon Foods, Hobby Lobby, Home Depot, Michael’s, Bed Bath and Beyond, Baby’s R Us, Toys R Us, Best Buy, Lowe’s, Costco, Sam’s Club or other stores in our area.
Today I ran over and visited my girl. I told her what I was up to and the huge celebration that is to come! The image that plays through my mind, as if it's on a big screen, is the one when she was leaving this world and had a huge smile on her face! I can picture her smiling like that in heaven! Oh the surrendering, oh the relinquishing, and OH the JOY!!!!!
We prayed for all of you too as we shared peaceful time alone this morning.
There's a party goin' on right here
A dedication to last throughout the years
So bring your good times and your laughter too
We gonna celebrate and party with you
Come on now, celebration
Let's all celebrate and have a good time, yeah yeah
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?
We first went in on April, 19th 2016. Thirty minutes before our appointment, my nerves kicked in, heading back into the same office where we had so much history, about to check on the status of our fourth child, the newest addition to our family. Seven weeks pregnant, we were overjoyed to be there. I was hopeful, but I couldn't focus on anything except how hard it seemed to breathe in that moment. My chest felt like it had a 30 pound weight pressing down on it, when I laid on the ultrasound table and she squeezed that warm goopy gel onto my belly, the weight on my chest doubled to the feeling of 60 pounds, I was light hearted and heavy hearted at the same time. And then, we saw it, the uterus with a good looking yoke sac inside , a life that had a heart beat fluttering steadily. We squeezed each other's hands, we smiled, and we surrendered! During the ultrasound though something rather interesting happened. The technician was playing music, a song came on that we played at Arabella's funeral and says; "You give and take away, You give and take away, My heart will choose to say, Lord blessed be Your name!" Will and I looked at each other, each thinking the same thing but neither of us saying a word. Out of all the songs in the world that could be played at this time, WHY this one? I almost felt at that moment God was trying to prepare our hearts. And for the fourth time, we fully surrendered another baby to Him, submitting to what he had planned for our future.
The weeks have been filled with thoughts of our rainbow baby, the excitement of sharing with family and friends, the hope of another life being formed inside my womb and Mayla finally getting the sibling she has been talking nonstop about! We never told her we were pregnant but she would bring it up on a daily basis, even telling me that we were having a baby boy and she was starting to pack toys away for him. She would see baby items in the store and insist we bought them for her brother. We never told her, but we think God did! The dreams were coming, and December 12th was ingrained on my mind already as the future due date.
Last Friday I was overcome with fear, I sat in tears as I longed for Arabella and feared for the life that was inside me, it was the scariest point I had been since getting pregnant. My mommy instincts knew something wasn't right, all I wanted to do was hug Mayla and hold her close and be near my husband. Sunday came and the signs started coming, but it was Mother's Day and I ignored them, and went about my day. Today there was no ignoring them.
Hope was diminishing by early this morning, and I had to cling to Trust. I had to trust that God knew what he was doing, I had to trust that he had our lives in his hands, and I had to trust that everything WOULD be ok! It was a battlefield! Two songs came on the radio back to back. The first, Blessed be your name (lyrics above), and the second was called Eye of the Storm by Ryan Stevenson (had never heard it before today).
"In the eye of the storm, You remain in control
In the middle of the war, You guard my soul
you alone are the anchor, when my sails are torn
Your love surrounds me, in the eye of the storm
When my hope and dreams are far from me, and I'm running out of faith
I see the future I pictured slowly fade away
And when the tears of pain and heartache are pouring down my face
I find my peace in Jesus' name."
Today as I once again squeezed my hubbies hand during our ultrasound and sat and looked at a screen with a uterus with no heart beat, the tears of pain and heartache began pouring down my face. Dreams were broken, desires were shattered and the pain was intense. Once again I mourned the loss of another child and another part of my heart was broken! I clung to my husband as I sobbed and cried out to Jesus. I felt the wounds open and salt being poured in, once again surrendering to the fact that we are in control of only ONE thing and it's the way we respond to what is thrown at us in life! We stood there in that dim lit room holding each other, praying and being thankful we had one another. He was my strong tower, uttering over and over, "it's nothing you did, You did nothing wrong, it's not your fault!" When we married each other exactly 8 years ago today this was NOT where I envisioned we would be spending our anniversary. This is all so raw...this morning I was straying from everything you stray from when you are pregnant, tonight I'm drinking tea and had soft cheese, pregnancy rules out the window, and my heart, body, and mind trying to figure out how to bounce back from this.
Our #CELEBRATEEVERTYHING hashtag is once again being put into practice as we travel down another bumpy road filled with many obstacles. I'm beginning to think my white surrender flag isn't big enough to be seen!
Why us, why this baby, why again? I don't know and it's hard, but it's ok. What I do know the answer to is what now? I wake up tomorrow, I get out of bed, I love Will, I love Mayla, I love others, I breathe and I find peace and comfort in God! Through the tears, I surrender and I submit, because God's got this!
It was the one thing I had waited f so long for, but yet the one thing I really didn't want. I was saddened everyone else there had a name, and ours only had a decoration and maybe initials. But when I first saw it, I went numb. There, my daughters name was on a granite slab, next to all the others, two dates written on it, with not enough time in between those days, yet incredible that we were chosen to get two dates and not just one. The imprint of her feet were so perfect and so real, it felt like yesterday I was rubbing those sweet toes and adoring the size of her perfectly shaped feet! There is sat, so high on the ground, fresh, new, unblemished. Seeing that opened up the flood gates of tears, it now felt permanente. Yet within that moment there was joy and there was hope for how far I have come since we first got her diagnosis February of 2015. I was standing in a sacred space and proud that we conveyed on her headstone a very important message, every life matters!
This was a VERY interesting find online today. I had NO idea something like this existed. I was actually feeling like a proud mommy when i read this, almost like she made the cemetery honor roll. In all seriousness, I feel honored to have been chosen to be her mother! And her mother I will always be!
Decorated for Easter by our amazing Neighbors
This week has been hard on me. I have found myself holding her blanket more the past week than past months, trying to sniff out any smell that may possibly be remaining. Mayla was trying too. She grabbed her sisters blanket earlier this week, picked it up and said, 'OH MOMMY, it smells like Arabella'! She was jubilant with excitement, and I will have to admit, there was a sweet fragrance lingering in there that did smell like Arabella. I smiled and thanked God for that gift. My longing for her may come from missing my husband, who has been working insane hours and not around much, or from the budding Arabella tree we planted after we lost her, or just the changing of seasons, or just because that's grief, and it's unpredictable and will always be a part of me.
Mayla colored her first family portrait the other night at Ele's place. She JUST learned how to draw people (this was actually my first time seeing this new found ability of hers) and this constantly brings tears to my eyes, but I was so proud, I had to hang this HUGE masterpiece on our wall.
PAPI, MOMMY, SMALL ARABELLA and MAYLA
May is Anencephaly awareness month. I came across the following picture and it captured my heart. We called Mayla our little warrior girl, and now we have an Anencephaly Warrior too! Arabella was a fighter all right....man how I miss her!
The holiday tomorrow is also a tough one; Mothers Day; my heart breaks for those who lost their mother too early, or the ones that have also suffered the loss of a child, a still birth, or the ones desperate to be mothers who are fighting hard for a chance to hear a little one utter their name. When I think of where we are at in our journey, I cry with one eye and smile with another. I am saddened over the ones we have in Heaven this Mothers day, it pulls at my heart strings as I'm so torn, yet rejoice over the gift of Mayla. Every day I realize she is a miracle. She has a beautiful scar to help remind me too, and every day I surrender her back to God. Her, Arabella and Lil BE never fully belong(ed) to us; no, they were/are on precious loan to us. This mothers day, I will celebrate though, because I have so much to be thankful for, there maybe tears, and there maybe longings, but there is so much hope, there is so much joy and there is so much rejoicing over what I have been given and what lies before me. #celebrateeverything
I have about 400 more things to blog about, millions of thoughts that have ran through my mind and the countless blogs I have wrote in my head during the last months, but I'm just going to fess up and say, they won't ever happen (there I feel better I admitted it outloud)....i'm still trying to work on all those wonderful thank yous that about 20,000 people deserve! I wish I could hug you all personally. This journey has been rough, the worst patch was around the 4-5 month mark. If you know someone suffering a loss, store this little fact and check in during that time. If they say they are fine, dig a little deeper and ask again. My support group has been off the charts, the one person I struggled with the most was myself. I was (and still have days, some weeks too many) that I was my worst fear! I got help! There, I admitted that too and that feels good as well! If I didn't I knew I would not be the wife Will needed/nor wanted or the mother that Mayla needed/ nor wanted or the sister I needed to be, or the daughter I needed to be, or the aunt I needed to be. I got help, anything and everything that could be holding me back from the past, present or future was talked about and i've healed greatly! I"m not perfect, and that's ok. I have limitations, and that's okay. I mess up daily, and that's ok, but i'm also learning to fess up sooner, heal better, be bigger, and love more. Mayla has heard me admit to her countless times lately that i'm sorry for failing her, and for letting her down. I'm explaining how far from perfect I am, and that's why we need Jesus, someone to teach us how to forgive so that we can freely forgive others! Who needs to hear you say that you forgive them? Something big, something small? What's holding you back from healing and restoration?
This road has been amazing, I have NO regrets and i'm proud to be a mommy of two amazing Warrior Girls! Happy Mother's Day and hugs to all the mommies who are struggling with how to feel this Mothers Day!
And these words will fail in doing this story any justice.
I got the go ahead to push. I was struggling as I knew I needed to push hard to get her out, but all I could think about was the more I pushed, the more her head would hit again and again up against the walls of the birth canal; and that thought made me NOT want to push. Once I started though, I knew I had NO choice and I told myself, 'Push Keri, and PUSH hard, you have GOT to get her out of the birth canal and you have GOT to do it NOW'! The visions of her unprotected skull motivated me to do one of the most challenging things in life. I had to fight for her! I could feel what was taking place and when I felt her come out, I heard nothing. I'm pretty sure in that split second my heart stopped as I felt the motion in the room come to a halt as well. And the words that no parent should ever have to ask hesitantly rolled off my tongue, 'is she alive'? "SHE IS", exclaimed my doctor, and there laying so perfectly on my chest was Arabella Nani Ellis, breathing SO loudly there was no question of her status! She was my daughter, perfection, and full of love. She fit perfectly on my chest. Wonderfully made. Arabella came out with the fluid filled sac still protecting her head, miracle after miracle we witnessed with our 'incompatible' life little girl. https://youtu.be/LsSJIfL64Kw
We held her and cried, and praised God. She was beautiful. Almost our whole family was there waiting in another room (THANK YOU ALL), and the looks on their faces were priceless when they laid their eyes on our little breathing miracle. They too, Aunts, Uncles, cousins, grandmas and grandpas would have to tredge the same road we were on, how long until we had to say goodbye, we knew it would be soon, selfishly I didn't want it to come.
Arabella was breathing on her own, had amazing color and looked like she was interested in staying around for a bit. So we decided to give her a little oxygen to help. We had it set to the lowest setting. I tried breastfeeding her relatively soon after she was born, and the bond was amazing, once again it was nothing I had anticipated but was joyfully celebrating that miracle. Arabella was proudly passed around from one person to another. Each person who held her was as captivated by her as was I. She accepted love and she freely gave it. EVERY LIFE MATTERS!!!!
A couple hours after she was born though we prepared to say goodbye, we gathered around, prayed, cried, and held each other as we celebrated what we were given. Arabella's color was leaving her and we thought she was on her way to heaven..............minutes later though she showed her strength as color returned. She was back and ready to go. As the clock ticked
from 2:22pm to 3:22pm to 4:22pm the word celebrate everything took on a whole new meaning. Arabella was getting extra credit. The gift of life team was all set up in another room (everything is very time sensitive with a donation), but as the hours went by, it was obvious that God had different plans for that day. They visited with us, gave us gifts and supported us along side the hospital staff, family and friends. It was one of the most joy-filled, heartfelt, upbeat, wonderful moments of my life! We were a family of four!
Our afternoon was spent passing her around, laughing, wondering, standing in awe of God's work and of course, lollipop sharing............
Arabella began rooting about 4 hours after she was born, rooting, the one who they said we shouldn't feed, the one whom the world told me I should abort, the one who was marked incompatible with life. God is still in the miracle business, and we witnessed it! We decided a gavage tube would be the best way to get the milk directly into her stomach, what was amazing that this picture does not show was that she was sucking as she was getting the milk, lips moving, tongue thrusting, she was working for it. She kept working and we kept feeding, we realized afterwards that it was probably a bit too much, but she handled it like a champ. We were all walking in uncharted territory. This was completely new for us, the nursing staff and the hospital. Everyone was patient, everyone was flexible and everyone was in awe as much as we were!
She was so content after she ate, so at peace and so perfect!
We tried on hat after hat after hat for this sweet girl. NOTHING worked. My amazing friend Kristen even spent hours upon hours buying every single toy baby in the store who had a hat on and went to every store in grand rapids that sold premie stuff looking for a hat to fit. Her efforts were amazing but no luck!
Arabella had a sponge 'bath', and of course some 'extra' mommy touches. Not knowing how much time we had, we tried to do it all.
By the time evening rolled around, I had been awake for over 41 straight hours and was in need of a serious 'nap'. We wanted eyes on Arabella all night though, so set up shifts to cover. We had wonderful volunteers who proudly did their job and I was able to get a horribly great 3 hours of sleep. In between the minutes my eyes were shut, I would roll over, open my eyes just enough to see whoever it was that was holding her and my heart would melt at the moments they were having together. Each time, without fail, their eyes would be glued to her. Talk about peace.
In the morning she was still with us, and still around the 100% mark for oxygen. Throughout the night and morning she had gone from syringe feeding, to bottle feeding, as well as getting what I had been pumping. Every new nurse that came on duty was so eager to help, was in awe of our fighter and did an amazing job loving on all of us!
Late in the morning on the 20th, Arabella had been very irritated, we couldn't figure out why. She seemed in pain and after trying a few different things, we realized it was from the way her hat was rubbing on her brain, our hearts broke when we discovered that and at that moment we were DONE with the hats, she completely relaxed once we took them off. We had decided that this was our daughter, there was nothing to be ashamed of and nothing to hide. She was fearfully and wonderfully made! Early afternoon on the 20th, we did a room switch up to another floor that in our mind was a downgrade as we lost our HUGE room, didn't they see we needed a suite for all the people? There was also talk of us possibly going home, but that was an idea that Will and I could NOT wrap our minds around, so we brushed it off. Because of the room switch we were once again introduced to an incredible nurse who took amazing care of us. When we got to our new room Arabella's pediatrician came to visit.. WHAT she was assigned a pediatrician? NEVER did we imagine that! We asked any and every question we could think of, thankfully we had help from family as i'm not sure my brain was fully grasping all that was happening. The was foreign territory for them at Devos Children's hospital, but he was willing to do what we could together to walk this road.
My wonderful sissy was prepared and brought in birthday cupcakes. We celebrated her one day birthday and sang happy birthday to her. It was filled with SO many smiles.
Later in the afternoon while her cousin Molly was holding her, Arabella received her first shot, we opted to only do one, a vitamin one. Once again, this was an event that I did NOT think we would ever need to discuss, let alone perform. Arabella continued to go from arm to arm and continued to feed from a bottle every 3-4 hours while I pumped. Her early evening feed she seemed off, and I thought it was odd. My heart knew but my mind wanted to ignore. I kept telling myself it was because she was still full from earlier, she had been rockin' it. I didn't want to allow my heart the ache that I knew was ahead. Her oxygen started to dip and even with turning up the level, it was not
helping so we decided to take it off. We had agreed on a level and we weren't going to go past it. We had peace. We called gift of life to give them a heads up. We then sat and watched and waited and the most beautiful thing happened, we witnessed Arabella seeing glimpses of heaven. Her eyes would open wide, since she was born her right eye would not open, but when she was about to meet Jesus, she opened it. Her left eye would not move, but when she was seeing heaven, her eyes moved from side to side. At just over a day old, she smiled. The light that beamed from her eyes was breath-taking, captivating, astounding and one of the most remarkable things I have EVER seen in my life. We witnessed an out of body experience on our little Arabella. We sang to her, we prayed together and over and over we told her her work on earth was done, it was ok for her to let go. The color was fading from her as we said over and over, we love you, we love you, we love you and we will see you in Heaven. One by one the family members flooded the room, tears, hugs and smiles. After over three hours, our tears turned into laughs as we were all astounded she was still holding on. And then again, her color slowly returned and her oxygen was between 90 and 100% unassisted by any machines! A reason that is past our understanding, Arabella stayed with us, and around midnight on the 20th, our families, nurse and pastor left as emotionally drained as ever! They sprinted up there to say their goodbyes, but instead left thinking, 'maybe see in you in the morning sweet girl'.
About two hours later, while Will and I were alone with Arabella, thinking about going to sleep, she started to pass away again, her beautiful pink color had turned into a blue pale color and she started to have seizures. We held her, prayed and prayed some more, we felt so weak and longed to have the girl with us that we saw slipping away. She was
special in so many ways, but every time we started to lose her, we were reminded, she isn't ours to begin with. God made her, he created her, she is on loan to us and we were grateful for the time we had with her! We laid with her, holding each other and holding her, once again letting her know it was okay to leave us. We said goodbye over and over, smelled her, kissed her and cried on her......and then it happened again, color restored and oxygen levels back up. She wanted to stay with us for the night. So Will and I did what we said we would never do as parents, we all slept together in bed! :) It was beautiful, it was peaceful. I didn't know if she would be alive when I woke up, but I knew I had an unexplainable peace.
PURE PERFECTION and Sweetness! Still going strong!
We slept for about 2.5 hours together, and early in the morning hours, what woke me up was her rooting, she was hungry. So without hesitation I breastfed her, I was amazed by her. Miracle after miracle. Remember they wanted me to abort her? "There is no foot too small that it can not leave an imprint on this world."
Shortly after we woke up, hospice was in talking to us about going home. We had a car seat on its way to the hospital and we were starting to sign papers. We were freaked out, but the thought of dreaming of what it will be like with her at home was an incredible feeling, once again a road we did NOT anticipate going down, celebrate everything! Arabella taught us so much! Nothing is in our control!!! However, as papers were being processed, we were once again losing her.
On August 21st, 11:22 am, after spending an amazing 45 hours together, Arabella Nani Ellis finally gave up her fight and as she raised her arms into heaven, she took her last breath. She went straight from our arms to Jesus' arms, he picked her up, and she was healed.
This story is part of God's story, and even though I don't get it, I see purpose because I know Jesus Christ and he is hope! Arabella has forever changed the landscape of my heart, it's better! Thank you all for journeying with us. Grief is not a phase, it's a life time. We have welcomed you all into this with us because it's not only about us. We appreciate you more than you will ever know! The support has kept us going some days when we don't feel like going. We are filled with Joy, Hope and Wonder for what God has in store for the future, and with grateful hearts we remind you to CELEBRATE EVERYTHING!!!!!!!!!!!!!!!!!
August 18th, 2015, 7:52pm at night. I sent a text message to my sisters and mom: "Be on red alert tonight. My stomach has been a ROCK allll day today, and i'm having lots of spotting and being super no patience mom. I'm begging God she doesn't come tonight, but things are pointing towards her wanting to."
8:01pm I was confined to the couch and 'trying' to make the signs of labor go away. HA!
Aug 18th, 10:51pm My sister Kelli came to get Mayla and I was in bed with Lavender oil smeared ALL over my abdomen, and diffusing above my face to try and slow the train down, (clearly a lesson on 'controlling' would have been helpful within that moment when my brain seemed to stop working). Thirty minutes later, I was up realizing that with contractions coming 6-10 minutes apart there was NO sleep that was going to be happening for me.
August 18th, 11:51pm text message to my sissys and mom: "Will most likely be going to the hospital in a bit (letting Will get some sleep while I gain some serious encouragement, motivation and support from FB which has blown up and people's support is a gift to me right now, I seriously feel like a giant on top of a mountain right now, full of peace and abounding in strength). Contractions are 6-10 minutes apart but not painful at all. Hospital already knows i'm coming in. I don't want to be turned away like I was with Mayla, so i'm just chillin'. Love you all. Get some sleep, someone will have to be in good form:)"
August 19th, 12:28am, "On our way".
Aug 19th, 1:07am text message: "Dilated to almost 4cms. Staying. Decided against pitocin for now to see how she progresses on her own. Contractions are starting to feel like contractions. Heart beat is strong. Big praise right now!!!! Pray for peace as this was not OUR plan!!!! We didn't even bring our bags In cuz we didn't think we would be staying." August 19th, Middle of the morning, admitted into the room, the room we visited, the room we dreaded, the room we had anticipated saying hello and goodbye to our daugher in. The room brought comfort, excitement and pain in the same breathe. I remember laying in that hospital bed, trying to rest and relax and MAD at God; "Remember God WE had a PERFECT plan in place?"..... I was scheduled to be induced on a Thursday, one week before her original due date. We had a team that was going to be there from Gift of life, we wanted to donate any part of her that would qualify to help other babies have a chance at life, we needed to make arrangements for Mayla and a photographer, and of course to help family members have a plan too and have a chance at my doctor being able to deliver her. It was a perfect plan in MY mind. WHY GOD? WHY GOD? WHY GOD? I screamed out, wondering if he had forgotten me, did my voice not matter to him any more? Had I asked for too much? God where are you now? I need you!!!!!!! Then I heard God say, "Seriously my dear child, you are going to complain about 'YOUR plan' not working out? What about surrendering, what about submitting, what about trusting in me above all else? "You are so right God," I said, "please forgive me.'"My favorite bible verse says, "Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge him and he will direct your paths." I was doing a horrible job of living that out and in that moment, I celebrated being there and surrendered every detail to Him, Jesus YOU are my all in all! Shortly after that a lady nurse walked in who was from the Anesthesia team. She heard of our situation and came to pray with us. God cared, and God was showing up in different ways to let me know that he in fact did NOT forget about me. I needed others praying for me and with me, and God knew that! God placed us at the hospital on the perfect day and at the perfect time, and I was beginning to see that.
sissy trying to bring me comfort
Around 7am I was dilated to a 6 and decided it was time for an epidural, I had been awake for over 24 hours and knew I would need all the help possible. Shortly after getting one, I started to feel extremely sick and my blood pressure was tanking. It was very frustrating and part of my birth story I will never understand. Wasn't what I was about to go through going to be hard enough, let alone this extra pain I had to experience? I was so sick, and so impatient, and once again, begging God to take it away from me. I felt weak. The holy spirit was strong though, and the prayers of so many were felt! My amazing nurse was working like crazy to help me feel any relief, and help me from going crazy. She was simply incredible, and a gift from God! I can't believe I was complaining earlier in the morning about my timing vs. God's timing, he knows what's going on, and he knew EXACTLY who I needed to be my nurses at every stage of the game.
ONE of the many amazing nurses, when she couldn't be found, no one thought to check the room right next store, she was in loving on Mayla. SERVANTS heart! She will never know how much of a gift she was.
It felt like days, but the extremely sick feeling finally left, and the contractions slowed...take the positive with the negative. During this 'waiting' phase it was brought to my attention that by some crazy 'chance' (ha), I know better, my doctor was scheduled to be at the hospital that morning and was going to swing by and visit with me! Instant tears. How cool is God? I was pumped to see her, it brought me peace and there was even talk that she had a few things to do and might be around for the delivery. I prayed, and thanked God for the hope as I was NOT such a fan of the doctor who was on the floor that day. You know how there are really great people in this world, but yet you just don't click with them? That was me with him...he was super nice, but something just didn't click for me and this was a birth that I wanted as much 'clicking' as possible!
They kept checking me and things were not progressing as well as we all hoped, during one check even they thought Arabella had turned breech. It took every bit of my will, energy, and work of the Holy Spirit to NOT freak out at that moment! Arabella had been head down for months, seriously could it be? What would delivering her this way look like? I had no time to research, and as I laid in bed contemplating how it could have happened, I thought to myself, 'This could be a good thing, if her head doesn't come first, there might be a better chance of her being born alive, I surrender that to
my face when I saw my amazing photographer friend
God and laid patiently waiting for confirmation from the doctor. We didn't have a baby heart monitor on me much, so part of me was smiling when the nurse told me she thought she felt Arabella kick her, and that's why she thought she was breech. I was just pumped to know she was still alive! The doctor confirmed Arabella was not breech and I was actually elated! God's got this! During this time another amazing thing happened, my amazing photographer friend was able to show up! I felt like God was holding me tight and hanging out in the room with us!
We needed to break my water so that things would start moving, however I had heard it's better with an Anencephalic baby to prick the sac instead so that it doesn't rupture, but just 'leaks'! So after searching high and low, they found the appropriate needle and pricked! And who do you think performed this, MY DOCTOR! GOD was showing up ALLLL over the place...remember how bummed I was about 'MY plan' not working out! HA....His plans are so much better! Within a short time the leak was proving to be successful and Arabella was cruising down the birth canal! I was overjoyed at the thought of meeting her, seeing her, holding her and kissing her! We just kept praying! For months we had been pleading with God that she would take ONE breath so that she would qualify for donating, this prayer remained the same hours and minutes before she was born. I had peace, Gods will be done!
By the time I was dilated and ready to go, rumor had it my doctor was STILL in the building. I was smiling so big inside, God was making it happen! However, when I was MORE than ready to start pushing, she was nowhere to be found and not walking through the doors like I had hoped! It felt like the longest minutes of my life! When she finally walked in I wanted to scream out in jubilation. Nine months of waiting, 189 days since we found out about her condition, 4,536 hours of celebrating her and figuring out at the same time, how we would say goodbye; and the moment was now here! Nothing, no thought, no words, no song could ever have prepared me for that moment!
