It's Our Turn - Meet Everly Jo

Hey guys! I have been getting a lot of questions from friends and family about whats going on with Everly. I have been thinking that in 20 years from now, when she is an Olympian she will appreciate reading words about this difficult time and what she had to overcome.

I will first start off by briefly introducing myself and my little family. My name is Markie Ostler, I am married to the love of my life and best friend, Andrew Ostler. We met in May of 2013 and married April of 2014 in the Draper Utah LDS Temple. Exactly 2 years later we got a puppy, Roger, (he is a crazy little POS, but we love him). A little over a year later, we had our first baby, Urban Leroy, on June 4th 2016. Now we are pregnant with a baby girl, due November 12th. Up until giving birth to Urban, I was working for a software company called Solutionreach (shout out to them! It was a wonderful place to work,) and Drew does summer sales. If you aren't from Utah and you aren't familiar with "summer sales" it just means that every summer, you pack up your car, travel across the country and become a door to door salesman for a few months. In that few months people can make a pretty good living and we have been so blessed that Drew has become so successful with it.

Roger

If you are thinking to yourself "Wow, pretty cookie cutter.. sounds like they have the perfect life", then you are absolutely right. I thought the exact same thing. I don't know if it was my anxiety/depression talking, but I was always living in fear that something was going to go wrong. I never felt like I deserved the beautiful life I have been given. I was too rebellious, too stubborn, too much of a black sheep to ever meet the man of my dreams, fall in love, and start a beautiful family. I literally thought that wasn't in the cards for me. Every time I would hear a news story about a family going through something so unbelievably difficult, I would turn to Drew and say, "Honey, we aren't exempt from that.. that could happen to us". You can ask him... I literally said that all the time.

I added this note in my phone on June 25th. Just 5 days later we found out about Everly.

So here we go, it finally happened, it's our turn to go through something unbelievably difficult.

It all started at 3:45 AM on June 30th, 2017. I had been visiting family in Utah (from New Jersey, where Drew had been knocking doors). I normally planned my trips to Utah around my doctors appointments to check on my baby girl. This particular visit just happened to land on the 20 week anatomy ultrasound. If you have ever had kiddos you know that the 20 week ultrasound is the nerve wrecking one. They use really high tech equipment to get a more detailed look of your baby to make sure the development is looking okay. So anyway, it was a Friday morning, I had to borrow my moms car to make the drive from St. George to Salt Lake for my appointment. I had made plans to wake up around 6 AM to hit the road and make it to my appt by 11 AM, but Urban had other things in mind. That morning he woke up at 3:45 and was WIDE AWAKE! Such a punk. I could have really used that extra 2 hours of sleep, but since that wasn't happening, we packed up and hit the road.

 

We got into Salt Lake, ran some errands, I threw up a couple of times, and then I headed to my in-laws house to drop Urban off. You should know that I stopped throwing up around 12 weeks, so I knew that the upset stomach had to be because of my nerves. I texted my sister (who is also pregnant and recently had her 20 week ultrasound herself) and told her that I was throwing up and she reassured me that "the nerves are a real thing!" I finally got to St. Marks Hospital for my appointment. As I walked in to the building I was shaking and completely terrified. Looking back, I feel like there were several things that had happened to prepare me for what I was about to find out, but I won't go into those right now. I checked in at the front desk. The ladies were all so nice and didn't judge me when I plugged my phone into the wall to make sure it was charged. I was texting Drew and giving him a heads up that I would be face timing him shortly so he could be there to watch the scan as well. At that time he went and sat in his truck so he could give Everly and me all his attention.

A few minutes after my appointment time, a really nice dark haired lady called me back. As I got to the room I asked her if she minded me face timing my husband so he could watch the scan as well and she said she didn't mind at all. I found another outlet for my phone, and face timed Drew.

(Sitting here writing this is making me very emotional and nauseas. Still so many flashbacks that are almost unbearable.)

As she started the scan I asked her how long she had been a technician. I feel like that is important to know! She told me that she had been doing this for over 10 years and that made me feel great. I explained to her that I was having flashbacks of my 20 week ultrasound with my son. I told her how the technician found a heart problem with him and she was so awkward and quiet and she wouldn't tell me anything and she never sent a doctor in to talk to me. The staff said that they would send the results to my doctor and then my doctor would call me with the results. I left the Riverton Hospital in tears knowing that something was wrong with Urban but no one would tell me anything! It was absolutely awful! (Side note: Just so you are aware, Urban DID have a heart defect called an Echogenic Intracardiac Focus. We were so blessed that he outgrew that defect and it fixed itself before he was born.)

Back to Everly. The dark haired technician was very open and vocal about everything she saw on the scan. She apologized to me for how awful of an experience I had with my first pregnancy, and she didn't blame me for being so nervous. She said anyone would be nervous if they had an experience like my first. After the scan was done, she put the wand down and cleaned my stomach off.

Then it happened.. She made eye contact with me and said "Now, I have to tell you that I do see a problem..." All I could say was "Okay..?" I almost felt like she was joking at first.. who would joke like that? My brain had to process that those words really did come out of her mouth. She then explained to me that she sees some abnormalities with our baby girls heart and that she would send a Doctor in right away to speak with me about it. She told me how sorry she was to give me the bad news but she didn't want to do the same thing the technician did with my first pregnancy and that was to not give me any information at all. She had been working there for over ten years so she had to have known her stuff. She told me what she saw, and that was what I asked of her from the beginning of the scan. She handed me a box of tissues and left the room.

I didn't want to face my phone toward me because then Drew would see how badly I was loosing it. All I remember him saying is "You okay, honey?" and, "I wish I was there with you". He reassured me that modern technology is amazing and we will do whatever we need to to make sure she is okay. I told him "people aren't exempt from awful things happening to them and it's our turn..."

The next few minutes I stayed on the phone with Drew just balling and saying that "I KNEW SOMETHING WAS WRONG! I KNEW IT IN MY BONES". I can never put into words how much I knew something was wrong with her, but I always knew. (See screen shot above of the note I wrote in my phone 5 days before hearing the news). Mothers intuition I guess.  (Side note: at the beginning on the pregnancy I thought I miscarried several times because of heavy bleeding. There was another time when my doctor couldn't find her heart beat for several minutes and at that time I was convinced that I had lost her. I never felt confident she was healthy and developing the way she should be. I was always feeling like something was wrong but never got that confirmation until this 20 week ultrasound).

A few minutes later (what felt like an hour,) a Dr. Spencer came into the room. The technician followed behind him, as well as the head nurse coordinator. Dr. Spencer was very kind and considerate knowing that we had just received this devastating news. He went on to say that our baby girl has two separate heart defects that "ABSOLUTELY WILL REQUIRE SURGERY". Seriously, my world shattered. He went on to say that the first defect was called the AV Canal, which means that when the heart was developing, the 4 quadrants didn't separate the way they should have. That means there is a flow between the heart quadrants that needs to be shut, which requires surgery. He said the second defect is called Hypoplastic Left Heart Syndrome. This is where the left side of our babies heart didn't develop so she will require at least 3 surgeries to sustain her life. He told me that its not necessarily a "death sentence, but it is for sure a surgery sentence". He also said there is NOTHING I did or could have done to cause these defects and to not beat myself up over this diagnosis. He must have been reading my mind because I had already been thinking that it was because of my zofran (anti nausea medicine) or my zoloft (anti anxiety/depression medicine) or maybe I drank too much coke in the first trimester. Even though it was good to hear those words come out of his mouth that "This is how she was meant to develop, this isn't anything that you did", as a mother you still try to find a way to blame yourself. If I am counting right, my unborn, beautiful, perfect, angel of a baby is going to need 4 surgeries, AT LEAST?!? This seriously couldn't be happening. It was happening. I wasn't dreaming. All those nerves lead up to this moment. My worst fear was becoming reality.

Dr. Spencer then told me he would be sending me up to Primary Children's hospital ASAP so we could start meeting with specialist and get a plan going for all these surgeries she needs. ASAP apparently meant July 28th because that is when our apt is. I will have about 3 appointments per week at Primary Children's Hospital until Everly is born. I wish there was more to say. I wish there was an update. Unfortunately there isn't. I am currently living in Ohio, but moving home to Utah next weekend. Waiting has been hard but it gives your brain time to process. I have pictured just about every scenario in my head for when she is born. Will I get to hold her before they take her away and hook her up to machines? Will she be scared? Will she be in pain? Will she only know the inside of a hospital and getting her blood drawn and being hooked to feeding tubes? Will I get to have her in this life? Will I have her for a few hours? Days? Weeks? Months? Years? Will she ever get to wrestle with her big bro? Will she be able to get baptized? Drive a car? Go to prom? Date and marry one of her big brothers friends? If yes, when will she need her heart transplant? What poor family has to suffer the loss of a loved one so my baby can live a full and happy life? Will we be spending Christmas in a hospital this year? Will Urban pull on her chords and wires and hurt her? He will still be so little. I will hurt her on accident when putting her in the fuzzy jammies I just got for her? When I am buying clothes for her, should I plan ahead and buy her 3-6 month sizes in winter clothes? Will we have her for spring and summer next year? Will she ever wear that cute watermelon swim suit with the sunglasses and white hat? Will she ever know how much we love her? So many unknowns.. its overwhelming.. and to be honest, heartbreaking.

We are praying so hard for a miracle. We believe in them and we hope we can witness a few of them as this story develops. We pray that her heart will heal itself AS MUCH AS POSSIBLE before she is born and that from there, medical experts can take over. We pray for the medical team that will be watching over her. That they will know the best route to take when it comes to her surgeries. We pray for peace that whatever the outcome is, we'll get through it. We have testimonies in our Heavenly Father and we know this is part of his Great Plan. You have to know and understand sadness and despair in order to know and understand happiness and joy.

When we encounter challenges and problems in our lives, it is often difficult for us to focus on our blessings. However, if we reach deep enough and look hard enough, we will be able to feel and recognize just how much we have been given. - President Thomas S. Monson

Don't Worry! It isn't as bad as you sometimes think it is. It all works out in the end. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. - Gordon B. Hinckley

Since we announced on Facebook that our sweet Everly was sick, we have had an outpour of love and support. We CAN feel your prayers and we are so deeply grateful for them. Thank you to everyone who has reached out and sent us your love. I truly couldn't do this without you. Thank you for taking the time to read about Everly.

In the gospel of Jesus Christ you have help from both sides of the veil and you must never forget that. When disappointment and discouragement strike-and they will- you must remember and never forget that if our eyes could be opened we would see horses and chariots of fire as far as the eye can see riding at reckless speed to come to our protection. They will always be there, these armies of heaven in defense of Abraham's seed. - Jeffrey R. Holland

To be continued..