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Challenge: NICU Parenting

Missing the Usual Congratulations, Thanks to an Unknown Nurse, and a Broken and Healed Heart

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I had heard of PICU, but not NICU, until my 1st daughter was born. She was full term (40 weeks), but small and not breathing when born. She had been moving less and less over the week before delivery, and instinct is what made me call the doctor and go to the hospital on the day she was born. It turned into an emergency C-section, and I remember never hearing 'Congrats, you have a girl', what I remember is a doctor or nurse commenting immediately about how small she was, and not hearing her cry or make any noise. Turns out her cord had collapsed, and was wrapped around her twice. She was intubated, and then then began to breathe. They showed her to me very quickly, and then rushed her away to get further checked out. She was 4 lbs 13 oz's, but had been predicted to be larger, so she must have lost weight after her cord had collapsed.

Over the next 24 or so hours, I was not able to see her, and felt as if I was in the hospital for surgery, not for having a baby. It was quite strange. When I was finally able to see her, she was in an incubator, and so tiny. On one of my 1st visits with her, I was introduced to a cardiologist and informed that she had heart defects. I could barely comprehend what he was saying. A blessing in disguise, was that he was paged while telling me about her condition, and had to step away for a few minutes. At that point, a wonderful nurse, who's name I unfortunately did not get (everything was a bit of a blur at that point), handed me a piece of paper and a pen and told me to have the doctor draw a picture, and write down the information on the paper, when he came back. This was some of the best advice I had ever been given in my daughters life. I was able to refer back to this paper to better understand what was happening in my new daughters life, and I was also able to use this to explain her condition to loved ones.

I left the hospital a few days before my daughter, which was also a very strange feeling...

Once she was at home, the constant weight checks, doctors visits, feedings, and documenting began. We had to try and feed her high calories every 2 or so hours. We'd keep charts of feeding times and the small amounts we were lucky to get her to consume. We had goals of getting her to a certain age and weight to improve her changes of successful heart surgery. There was little sleep and lots of prayers and worry.

We had all sorts of signs to watch out for... and she pretty much had each one. There were times we were trying to decide do we call 911, or do we drive her to the hospital ourselves? We've witnessed doctor's disagreements on whether or not she needs to be hospitalized - they were weighing the pros and cons of medical care versus the risk of picking up other germs/illnesses.

At 7 months old, and just 10 pounds, she underwent successful open heart surgery. During surgery we were notified when she was put on a heart bypass machine, and were able to breathe again when we were notified that she was taken off the machine and her heart was working. When we were finally able to see her in recovery, she had so many tubes inserted, and cords attached to her. Her entire body was also very swollen. After a could of days she was moved from ICU to the pediatric wing. She was recovering well and quickly, and drinking regular amounts of food - which was incredible!

She is now a wonderful 18 year old young woman! She still has a heart condition, separate from what her surgery repaired, and is still monitored annually by her cardiologist.

Our NICU experience was terrifying, yet wonderful, yet a blur; and it helped our daughter live and grow and become the fabulous young woman that she is today.

Thank you to the doctors, nurse, and others who helped her live!

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