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Meet Mighty Stella

Meet Mighty Stella, as her mother, Shane, tells their story.

My husband, Blair, and I found out pretty early into the pregnancy that our daughter Stella, wasn't growing according to schedule and also didn't have room to grow. I was considered high-risk and had an ultrasound weekly, was put on bed rest a few times, and had more than the normal amount of doctor appointments so that I could be monitored. In all honesty, I was pretty naive about the risks of childbirth and before speaking to doctors, hadn't even considered that Stella might come early. I had absolutely no knowledge of what the possibility of a stay in the NICU might entail. Little did we know, we were in for a great surprise. 

At 24 weeks I started bleeding and was admitted to the hospital. After three days of being monitored and bed rest, Stella's heartbeat started to decline and they did an emergency C-section. At 3:46 am, Stella was born weighing 1 pound 1 ounce. Blair was told to wait outside the operating room and before they whisked her away to the NICU, he was able to catch a glimpse of our tiny miracle. I wasn't able to meet her until the next day because I was in recovery and because of the medication I was on for the C-section, I wasn't able to visit with her very long. I remember being amazed at how tiny she was, and how beautiful she looked.

The NICU is a whole other world that we were unaware of. Stella was put in the more "critical" nursery out of the four. We were really lucky to find amazing nurses that were on our team and whom we felt comfortable leaving Stella with. The whole NICU experience was very hard- having a baby that early is very traumatic and then having to depend on someone else to care for and keep your baby alive, all while trying to heal yourself, was a lot. I have no doubt that we came across as crazy to a lot of people during that time, but unless you've lived day in and day out in the chaos watching your child fight to live, all while having to sit on the side like we did for 6 months, you just don't know. And having to spend your days around so many sick babies, with the realization that many will not make it home, is really hard. I wish the NICU was discussed more, so there was more awareness about both its amazingness of it and also the tragedy of it for so many families. 

Unfortunately, Stella got Sepsis within her first few weeks of life and was very very sick. She was sedated and put on a ventilator and given a plethora of antibiotics around the clock. We met the head doctor after a few days into her sickness and he told us there was a great chance that Stella's little body wouldn't make it through the night, that she was just too sick. But if by chance she did, that would be telling of her future journey. Blair and I took turns and sat by her side the entire night when things looked really bad for her and I remember just praying and praying and praying, The doctor was right, Stella pulled through and has been a fighter ever since, even when the odds are stacked against her, she manages to prove the doctors wrong again and again. She is the strongest person I know. 

We were told Stella would most likely need most therapies available and would be developmentally and physically delayed. Because there was so much Stella needed help with, we had to prioritize what was most important to us and focus on that first. Our main concern her first few years of life was just to keep her alive- her immune system was so weak and because of her chronic lung disease, she came home on oxygen and around-the-clock medications, so it was important to keep as many germs away from her as possible. This meant basically quarantining for the first few years of her life and having to be really selective of who was allowed to see her. At four years old, she finally seemed strong enough to start therapy and since then, she has continued to receive speech, feeding, occupational, physical, and music therapy weekly. We are really lucky to have found a great group of therapists who have not only helped her grow into the amazing little girl she is but also provided us with so much helpful information and direction. 

The hardest part day in and day out of the NICU was leaving Stella every night or every time the nursery closed for an emergency or shift change. My husband and I were fortunate enough to be able to spend day in and day out of every day with Stella at the hospital, for six months. And because of the Ronald McDonald House, we were able to stay across the street rather than having to drive the thirty minutes to and from the hospital every day, which was a huge blessing. We spent every day with Stella, holding her, loving her, learning her, and listening to the nurses so we could eventually provide for her, the way she needed in order to survive. Having to walk away from your child and leave them in the hospital is not an easy thing to do. It broke my heart every night. 

My advice to any new mom going thru the same sort of situation is to love your baby as much as you can. Be there by your baby's side as much as possible, and be involved in everyday care and decisions as much as possible. Learn your baby. Be involved in conversations with the doctors and nurses. You are your little one's biggest advocate. Listen to your gut and speak up if need be. No one knows your child better than you. Also, take the time to heal yourself. I was constantly reminded of this and never took advantage of any time to myself. You learn to live in survival mode which will eventually wear you out. As a mom, we think we are invincible, but you need to be in a strong state physically and mentally to be the best caregiver for your child. 

The biggest challenge we've had to face since Stella coming home was probably the transition from living in the hospital, surrounded by doctors and nurses, to then being on our own. Coming from such an intense environment where if something should go wrong, she immediately had the support she would need- to then transitioning to being her primary caregivers here at home was really overwhelming and scary. Stella was still very sick when we were discharged and now this little delicate person was depending on us, to keep her alive. Having to navigate the schedule of her around-the-clock meds, her feeding schedules, constantly checking heart rate and oxygen saturation levels, and worrying about something as simple as a thunderstorm that could take out the power and turn off her oxygen concentrator- these were all things that were routine living in the hospital with a nurse or doctor directing you, but at home, we had to take on the role of doctors and nurses, without the safety net we were used to while in the hospital.  

We heard about Bee Mighty from Stella's physical Therapist, who mentioned it as an option to help out with some things we needed for Stella, and since she was a micro-preemie in the NICU, she would possibly qualify for some help.  Blair and I were also fortunate enough to have met and spent time with Lindsay Franks ( the founder of Pierces Project) while we were in the hospital for 13 months ( six in the NICU). She became a really helpful sounding board for us and was really kind and helpful during some really scary situations Stella was put in. It was so helpful having another parent who had lived thru the NICU, give us advice and direction.  We are so thankful for Bee Mighty and the grant they blessed Stella with, which allowed her to receive Music Therapy, which she enjoys so much. 

A typical day with Stella now consists of homeschooling, a different therapy every day and visits with grandparents and cousins. Stella loves to play any and all instruments but especially the piano, she loves to read or play with her Barbie's. Stella loves to laugh and be silly so there are lots of hugs, smiles, kisses, and laughter that happens throughout the day. We want her to know she is so loved. Because of her early birth, and learning about chronic lung disease, heart issues, GI issues, developmental milestones, sensory processing disorder, and Autism, Blair and I are better humans because of all that we have learned and she has made us look at the world differently, with more empathy and more understanding and we are so thankful. 

10. Advice we would give another family going through a similar situation, would be to take it one minute, one hour, or one day at a time. That's all you can do. If you look too far ahead it becomes overwhelming to the point of suffocation. Be present in the day, take in every second of whatever moment you are in because things can change in an instant and your memories will be priceless. Also, if possible find a doctor on your team that you trust. We are so thankful for Dr.Hufford and Dr. Chadha for everything they did and continue to do for Stella. They saved her life and we are eternally grateful. 

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