written with love
by,
her mother Heidi
When Natalie was 18 hours the nurses took her to the nursery for a routine exam. The nurse said she had heard a very loud heart murmur and was concerned about how sleepy she was and that she hadn't eaten much during the day, she also thought she looked a little "dusky". Soon the nurse told me that her oxygen level was low and they were going to do an echocardiogram to check her heart. Before long, Mike and I received the devastating news that Natalie had a severe heart defect. The rest of that night is a blur of tears, prayers, and hugs from loved ones as we watched our precious little baby and wondered what the future would hold.
Finally, after hours of waiting for a pediatric advanced life support team to become available, Natalie was transferred to Minneapolis Children's Hospital. Thank God, she was stable when she arrived. They were giving her a medicine to keep her fetal circulation, (called a ductus) from closing off as it does in all newborns in the first 24-48 hours of life. They had warned us that sometimes a ventilator is necessary because they can stop breathing when taking it, but she was breathing on her own and didn't even need any oxygen anymore. Her cardiologist came and explained to us that she had a very severe heart defect called Hypoplastic Left Heart Syndrome. (Basically the left side of her heart didn't form). The only treatment is a 3 step series of operations. The only other option was transplantion and the odds of her survival were better with the surgery. Because she was doing well, they decided to let her rest and scheduled her first surgery, called a Norwood operation, for Friday the 23rd.
Our memories of the three days inbetween are what sustain us today. We had the wonderful opportunity to do nothing but sit and rock her, love her,and appreciate her. Mike would wake in the morning and rush to get to her, and hold her at night until he couldn't keep his eyes open anymore. I held her whenever I could get her away from her daddy and would only give her up to her big brother Austin, who could never get enough of holding her. None of us could. We have such beautiful memories of Austin stroking her head, whispering to her, and eagerly giving her her pacifier whenever she cried. We did alot of crying and worrying during those days, but we are so thankful for every moment we had.
There was no escape, Friday soon came. We spent the morning like we had for the last 3 days, rocking our precious baby girl. And then around noon we said our goodbyes and they took Natalie off to surgery. Many of our friends and family came and sat with us as we anxiously waited. Finally she was out of surgery, they said everything had gone well, no complications, but she was "struggling", the next hours would be crutial. After what seemed like an eternity, they came to take her to us. We went to her and initially the nurses that were at her sides moved for us so we could be next to her, but then we had to take our place at the foot of the bed, where we watched them work to save our baby for the next three hours. We took every opportunity to touch her, and kiss her whenever a nurse or doctor moved, and continued to watch and beg God to let her live. Finally they took her back to surgery, after over an hour of no urine output and extremely severe oxygen levels. We kissed her goodbye for the last time and went to wait and pray with our family and friends.
After 20 minutes they came with the news that would devastate us like nothing else ever could, Natalie's heart had stopped before they could even begin. Our baby had died.
Today it has been 10 weeks and 3 days since she left us and I still think about her all the time. I guess I always will. The pain may eventually fade with time, but I will never be the same, none of us will. Loving Natalie has changed us forever and we will never forget what it was like to hold her in our arms. She was and will always be our baby girl and we will love her and miss her until the day we die.
This picture was taken 6/23/00, the morning of her surgery.
She was so trusting and comfortable, and all I could think of was how perfect she looked.
She was at ease, and I was terrified.
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