Parents, you’ve got questions, we’ve got answers.

Or just as likely, we’ve got questions and you’ve got answers.

Challenge: NICU Parenting

25 Years Ago, We Asked to Put Our 25 Week Twins on Our Chest; We Were Told No

Vote up!
Share on Facebook Share on Twitter Email this article

It all started with almost 10 years of infertility (as a result of my husband having cancer as a teenager). We were so excited at 9 weeks to find out there were 2 babies! Twins, just like me & my twin sister, yeah! When I was 25 weeks pregnant, I was at work and somebody who worked in the law firm, one floor below me, threw a cigarette into the garbage can. I immediately smelled smoke and we all had to run down the steps to get out of the building. It was no big deal, except for the fact that it set me into labor. Against every fiber of my being, my babies entered into this world as precious as can be; two tiny, beautiful babies weighing 686 & 684 grams. I was on a strong path to learn anything and everything I could about the NICU and premature babies, ASAP...and I did. By the end of our NICU stay, I could read blood gases and tell you when to make a vent change, among many other things. Our son seemed to struggle from the beginning, but our daughter was doing amazing or at least as amazing as a preemie can do. When she was 3 weeks old, she pushed out her ET tube. The doctors thought about leaving it out because she was doing so well, but decided to put it back in for another week since she was so little. That was a mistake because the autopsy showed that they tore her trachea, which allowed an infection to get into her blood stream. On Friday, the nurses said, "isn't it great to finally not have all of the doctors hanging over your babies isolate's?" By the end of that night, her heart rate was up to 200 and we knew something was seriously wrong. The test results showed the infection. We wanted to hold her up on our chest, but the doctor would not approve it. By Monday morning, she was dead. (I have to mention, the night when we held her in our arms all night long, as we cried, the NICU nurses cried with us. We were oblivious to what was happening around us, but we were told). They day we buried her, we were told our son had the SAME infection, only his infection stayed localized and did not get into his blood, so he survived. A few weeks later, I saw a story on Good Morning America with Joan London, who interviewed a mother whose baby almost, but she did kangaroo care and the baby made a come back and survived. I ran to where I could get a video copy of the story, paid $50 and gave it to the Neonatologist, in hopes of getting to do this with my son. She looked at me like, don't waste my time, and regretfully, it never happened with either of my children. My son went thru so much trauma. He had ROP surgery in April and then had trouble getting BACK off of the ventilator. They cause major trauma damage to his air way, so bad that his oxygen level dropped down to 0% 4x's in one night. When they called us from the hospital, they did not explain what happened, but we knew something was wrong because why else would they call us? The nurse who had him the next day was so upset with tears and all she could say was, please just ask the doctors, just talk to them, so we did and we got the not so good news. The Neonatologist who was on that month told us is that all we could do is to wait and see. He told us of another little boy who went thru the same thing and all he could figure is that he was so premature and had a lot of brain development to go, that he came out ok. Fortunately, (with the exception of math skills), our son has done ok too. After 5 months of NICU stay, I told the doctors I wanted to take him home in 2 weeks. The doctors were shocked, but the Neonatologists agreed. With nurses and monitors in tow, he came home on June 10th and what a great day it was for our family who fought so hard to get here. Sadly, on his 1st birthday, his airway swelled again and he had to be trached. Before his 3rd birthday, the ENT doctors were able to successfully rebuild his airway with LTP surgery; reconstruction of the airway. Our son has been thru too many airway & eye surgeries to count and he has struggled in school, but he is now 25 years old and 6 classes away from graduating from college. It has been a long, hard road for him and our family, but we are so happy to have this wonderful person in our lives and for that we are thankful to all of the doctors and nurses who helped to make it possible; God Bless Them All!

This post comes from the TODAY Parenting Team community, where all members are welcome to post and discuss parenting solutions. Learn more and join us! Because we're all in this together.