We are the Spinda family (John, Shanna & Stella Mae) from Murray, KY... on February 1, 2011 at 10:27am our beautiful baby girl, Stella Mae Spinda, was born at 26 weeks gestation. She weighed 12.34 oz and was 9 in long - Stella suffered from Intrauterin Growth Restriction (IUGR) which caused both her extremely small size and her being born premature. Stella spent five days in the Neonatal Intensive Care Unit (NICU) at Norton/Kosair Hospital in Louisville, KY. She passed away late on February 5, 2011 from complications of her extremely small size. This blog was started when she was 23 gestational weeks old and we discovered her condition. It's original purpose was to keep family and friends updated on Stella's journey - we now hope to use this blog as a way to continue Stella's journey by honoring her memory and also as a way to support others who are struggling with infertility or have lost a pregnancy or baby.

Our Story

It took my husband and I almost three years to get pregnant. We spent a full year trying to get pregnant on our own before we finally went to the doctor frustrated, angry, and exhausted. After almost two years of medications and having surgery to open my tubes we finally got pregnant in August 2010. It sounds funny, but I was shocked. I had just been so used to the negative pregnancy tests that the positive one did not seem real. Right from the start I was terrified that I was going to lose this pregnancy.


At six weeks (we discovered I was pregnant at five weeks) I started bleeding and cramping. I was sure that I was going to lose the baby and went rushing to the doctor. The CNP did a pelvic exam. When I sat up she looked at me and said that it looks like I lost the baby. I could not breathe. But she wanted to do an ultrasound before she sent me home. We walked over to the ultrasound room and while my husband and I squeezed each others hands our little peanut’s heartbeat popped up on the monitor. Everyone was shocked! The CNP put me on bedrest until the bleeding stopped.  I went back to work on Monday, five days after I had started bleeding. By Tuesday (week 7) I was bleeding again. This time my doctor sent me to the ER. After much arguing with the ER doctor I convinced him to do an ultrasound. There I was able to see my peanut’s heartbeating once again. Again I was put back on bedrest until the bleeding stopped. This bleeding, ultrasound, bedrest cycle went on until week 11.  Not one of the doctors at my OB practice could figure out why I was bleeding, but they all assured me that things looked okay with the baby.

My husband and I were anxiously awaiting our 20 week ultrasound – it was right before Christmas and we could not wait to go home and tell our family the sex of the baby. Right away I could tell that something was wrong. As I watched the tech measure my baby the measurements seemed so small: 17w2d head, 16w5d arm, 17w3d belly, etc. The tech then asked me why I was here so early for my 20 week ultrasound. I told her that I was 20 weeks today and that I was not early. She didn’t seem overly concerned and just reported that my dates had to be wrong. I knew that my dates were not wrong, I had had an ultrasound almost every week up until week 11 and the baby had measured correct the whole time. Once my ultrasound was finished we went to talk to the doctor. He was not able to give us any information other than our baby girl was measuring four weeks behind and that her umbilical cord was a two vessel cord instead of a three vessel cord. I was told to try and gain some weight (I had only gained about 3-4 pounds thus far) and to come back in three weeks to see if she had grown. It was hard to stay optimistic over Christmas. Friends and family were telling us that things were going to be just fine, that she was just going to be a small baby, but this mama knew differently. I knew that there was something seriously wrong and I knew that I was never going to be bringing my baby home.

At 23 weeks we went back to the doctor to check the baby’s size. Almost immediately I knew something was wrong, again. The tech seemed very concerned and was not talking very much. I could see the measurements and she was now measuring almost 5 weeks behind. The tech told us that things just didn’t look right and that she was going to get the doctor. I was crying, my husband was quiet, we were scared. The doctor came in and told us that things did not look good, that he was going to get us an appointment with a specialist for the next day. That night my husband and I cried and cried. We had no idea what to expect. The next day we drove four hours to the specialist’s office where we finally got some answers. We were told that Stella had severe IUGR (Inter-uterine growth restriction). Most IUGR is caused by high blood pressure, diabetes, smoking, drinking, or drug use. I did not fit into any of these categories. Healthy women’s babies usual develop IUGR because of some sort of chromosomal abnormalities, so I had to have an amnio. My doctor recommended hospital bedrest and very close monitoring. I was admitted to the hospital and I spent the next three weeks hooked up to monitors and getting ultrasounds three times a week. A few days after my amnio, the results came back that there were no chromosomal abnormalities. This meant that my IUGR was a total fluke and the severity was even weirder.

At my 26 week ultrasound the neonatologist that my perinatologist asked to join my case, seemed to think that Stella had grown all she was going to grow and that by leaving her in any longer we risked her dying inside me. The ultrasound from that day showed that she was approximately 13oz and the neonatologist assured us that ultrasounds usually underestimate weight. I was scheduled for a C-Section the next morning. I was scared to death, knew that the chances of my daughter’s survival were low, and I was not ready to face this.
Stella Mae was born on February 1, 2011 at 10:27am, she was 12oz and 9in long. The doctors were surprised at her spunk and the development of her lungs. She may have only been 12oz but she had the maturity of a 26 week old, which really helped her. They intubated her, rolled her past me so I could get a peek, and took her straight to the NICU. The time that I had to spend in recovery and then in my room was agonizing. I just wanted to be with and see my little girl. Luckily my husband was able to spend time with her. When I finally got down to see her 10 hours after her birth it was the most amazing moments of my life! She was perfect… she may have had tubes and wires attached to her, but her fingers and toes were perfect, her little nose was beautiful, and she has so much dark hair for only being 26 weeks. My husband reported that right after her birth he reached in to her and she grabbed his finger. She did the exact same thing to me. I know that she knew my voice.

The next few days were perfect – she was doing much better than expected. Although her brain showed a slight bleed, we were assured that it didn’t look like it was going to spread and that it was normal in preemies. All of her organs were working and they even started her on pedi-lite a few days after birth. She was the miracle of the NICU – all the doctors and nurses were coming to visit her. She was funny and spunky and full of life. My husband and I were able to change her tiny diaper, take her temperature, swab out her mouth, and help the nurses. We were so excited to be able to do these things. We had yet to be able to hold her so doing things to help take care of our girl felt wonderful.

On February 5, 2011 I was discharged from the hospital. I just moved myself down to my girl’s room and parked myself on the recliner. I sat there all day, even refusing to leave to get lunch with my family. It was like I knew that something was going to happen. By the afternoon her nurse seemed concerned that her oxygen levels were going down and that she was having a hard time getting them back up. She called her doctor who watched her and ordered some meds. A few hours later she crashed… her heartbeat went well below 70 and the doctors and nurses crowded into her room trying to get her stable. After about an hour of her crashing, them giving her epinephrine, and chest compressions the doctors figured out that she had fluid built up around her heart. They removed the fluid and she became stable. My husband and I stepped out of the room to get some air and just cry. A few moments later we were called back into the room… she had crashed again. This time the blood vessels in her tiny lungs had burst from all the stress of her original crash. In a moment that I will never forget, her doctor looked at me and said “She is not going to survive this.” I screamed and cried and told them to stop and give her to me. My husband and I held our little girl as she took her last breaths. We held her for hours after that. The nurses took out all the tubes and cleaned her up. I sat in the recliner and rocked her and hummed to her.

Her doctor explained to us that medically she was a miracle, but it was the technical aspect of her tiny size that got her in the end. Her tiny veins were as thin as tissue paper and the fluids that she was being given leaked out of her veins. This fluid then pooled around her heart. Eventually her heart could not pump and that is when she went into distress. This distress caused the blood vessels in her lungs to burst and we were told the same probably happened in her brain. She was just so small her body could not handle that type of stress. We could not be more proud of our little girl. She fought so hard to live and never once gave up.

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