Rather than trying to put this emotional journey into my own words, I'm going to use the words of Stella's brave & loving momma, Tracy.
July 5, 2017-How do you post to the world that your heart was broken but made full again all in the course of a few months? Here’s my attempt – I tried googling it but turns out our girl and our story is 1 in a million. As I posted before I was told since February 15th 2017 that our baby would pass away inside of me. She wasn’t growing and she wouldn’t make it to what doctor’s call viable. With that news we started a barrage of testing. I remember that day like it was yesterday. Brian walked me to the lab and held me as I cried and cried and cried. I didn’t know at the time it was the first of many tears I would cry. I got my blood drawn without a second thought… We were at that time testing for a genetic reason that the baby wasn’t growing. I was tested for Trisomy 13, 18 and 21. I had no idea what that meant and I wasn’t going to question the doctors I assumed nothing was going to be wrong at all. I didn’t give that blood test much thought instead we spent our time trying to prove the doctors wrong on what my due date should have been. We were sure they were wrong we had it all figured out and were ready for my next ultrasound with that information. Five short days later I was in Starbucks getting my Decaf Vanilla Latte, I had just dropped LJ off with her Aunty Linsey and I was happy. I remember being happy so clearly because for some reason I didn’t let the weight of the 2/15 ultrasound hurt me anymore. My phone rang and my doctor asked me…. Can you talk? Inside Starbucks, happy and blissfully unaware she could be calling with bad news I said “SURE!”. She told me then my daughter had Trisomy 21. I said, what does that mean? And she said Down Syndrome. I luckily was near a chair as I fell back into it. I remember also asking her “has the test ever been wrong” and she said “I’ve never had anyone get a positive result”. Not because she’s a new doctor, the test is newer and you don’t have to take it. In fact we wouldn’t have – if baby was growing as normal. Nothing in the Ultrasound pointed to Down Syndrome at all so needless to say it was the biggest shock a person could receive in a Starbucks on a Tuesday morning. I won’t get into all the private thoughts and feelings we had, those are ours alone but we made our decision and I remember texting Brian one day the lyrics to the song “The River” by Garth Brooks. I said I don’t know why we were chosen for this path, but we were and it’s up to us to make it the best it can be. His response, like usual, was something so perfect that put my mind at ease (for 30 seconds – because dealing with something like this your mind and heart changes every 30 seconds). We set off to continue a pregnancy that they said the baby wouldn’t make it and she has Down Syndrome. Words will never express how difficult that was. I wouldn’t want anyone to be in my body and feel the pain I felt with every kick and every movement she made. I held my breath thinking is this the last one? And another kick would happen and I would think again… is this?? Until I couldn’t even think anymore I just put my pants on one leg at a time like anyone else would do each day and got through them. LJ was how I got through them honestly. She was a little beam of light through all the dark. Fast forward some months and Stella (we had named her for the stars as we assumed she’d live among them) got to 500 grams! Everyone was so excited (doctors that is), I wasn’t excited. 500 grams equals 1.1 lbs. But 500 grams = viable to doctors. I started more tests and more shots and we started talking about me delivering. I said no, to two doctors I said no. I just said I’m going to grow her more. They all agreed we were in unchartered waters and we watched her very closely for four more weeks and in that time she put on more weight – her heart sounded great – she moved all the time, I was sure I made the right decision. From there you know what happened June 1st emergency C section – Stella came out kicking and screaming, while an entire OR held their breath wondering what would happen. Her beautiful Nurse Janette told me she pushed away all attempts at helping her breathe. She said from that moment to all the doctors and nurses in that room. I got this people! When you get a Down Syndrome diagnosis you get a lot of things that your child will not do. Stella is here to prove all that wrong. She’s here to prove all the things she can do. And she’s going to do that surrounded by all the love in the world. I felt the need to share this with everyone because you are all my friends for some reason on the interwebs, which means I need your support more than ever. We need a village and I know we have one, and now the village knows the entire story of our sweet Stella.
August 16, 2017-We made our trek to Children's Hospital today. Emotions ran high for me all day. Sadness to leave my family at Columbia St Mary's. The nurses-the therapists- the doctors took amazing care of us. When I look back on my life I know those women and men will hold a very special place in my heart. Fear as they strapped my tiny baby up and put her in a ambulance to bring her to her new home. Hope as I spoke to Cardiologists and watched her get wheeled away to have GI scans - hope that they will figure out what to do so we can finally take our tiny baby home. And now as I try to leave her alone here for the first night I'm filled with tears and worry and anxiety, but I know in time we will make new friends here and they will love Stella as much as we do and as much as her CSM family did. Thanks again everyone for the love and positive thoughts and prayers. We have no idea when we will be home but when we do we are having a party!
September 13, 2017-It's been hard trying to keep everyone in the loop - and I've had no words to explain what has been happening. So bare with me. Stella had her PDA ligation yesterday morning. It was a success. No complications and the duct is closed. Her recovery has been rough. Sicker than any of us expected and impossible for us as her parents to prepare for. We tried so hard to prepare for it and until you see it you just can't. The plan for the day is to keep her sedated and manage her pain. When things get really bad here I remember we are in the best place for her- she's got doctors posted outside her door when necessary. Not just for her but for us too. The little lady is strong, but I'll admit as her mom I'm starting to crack. If I seem short in any of my responses please don't take it personally. I love you all. So many have reached out to us privately and publicly I can't even begin to thank you right now. But we will, we will thank you by posting huge smiling faces of all of us as we take her home. Here is another hard picture to see, but it's her reality and ours and it will make that snuggling picture when it comes so much sweeter to see.
September 15, 2017-It's been a very rough couple of days. I think we are on 4 hours of sleep between the two of us. We have a very sick tiny baby. And every tiny baby in the NICU is the boss of their own journey. Stella's has been one of stamina, strength and growth. I personally witnessed a nurse using her hands to compress Stella's heart. (CPR) When you see the monitors go zero on heart and zero on oxygen you can not tear your eyes off of it. It's a lifeline that you cling to, you will it to go up, you pray it goes up you also stand back completely helpless. Buttons get pushed nurses and doctors flood in alarms scream in our ears. One of the worst parts is watching this helpless baby and not being able to take her in your arms and comfort her. I wish I was reporting good news - I wish I could post a smile and a snuggle. But no doubt we are struggling, trying to hold on tight to her care and at the same time trust these doctors who don't know the magic button to push to fix her. Hope with me everybody that tomorrow is better.
September 18, 2017-I have so many people asking and rooting for us I wanted to give an update as fast as possible. Starting around Thursday evening Stella took such a turn for the worst that we thought we were going to lose her. Her team at Children's were trying everything. I personally saw her heart doctor (who've I decided now that I love) show up around 10pm on a Friday night to help bring her back to us. They threw a Hail Mary they hit her with the biggest guns they could and she didn't immediately respond, they met with us early on Saturday morning to prepare us for the worst. We filled the room with her family that day and I believe a mix of the medicine and love she felt helped her come back to us. She hasn't had any episodes and she's climbing in the right direction. Her nurse said today even though she is still very sick she's very hopeful and we all are. I have no words for the happiness I feel right now, thank you to everyone who was with us during the scariest time in our lives. All your love and prayers and good vibes it worked! Keep them coming, she's tough but that took a lot out of her, we need to keep her stable so she can keep getting better. Thank you near and far for all you did for us ❤️
September 20, 2017-Someone for real this time is starting to feel better. I hope it's not to early to want to celebrate this positive move in the right direction. When I said they threw a Hail Mary the other day I had no idea they'd have to throw another one so quickly after. They changed her ventilation strategy to one they wouldn't normally use on a kiddo that was on such a high level of support. At first she thrived with the change! But with in hours she was struggling again. Her daddy sang and whistled to her all night long and at some point with his love she rounded the corner. She's been doing great so far today. They have been weening drugs and ventilator support and she's thriving. Please don't stop sending those good vibes. But I wanted you all to celebrate this moment with us
So here we are.
Full of hope and love for little Stella and her family; Tracy, Brian, Caeden (her teen brother) & Lillian (her toddler sister). I have seen several people ask what they can do...Please, I ask you to donate for the ongoing medical expenses for this family of 5. Every dollar counts and will be appreciated. Please share.
Thank you all.
Love & Light.
-Natalie, Justin, Chase & Casey
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