Parent 2 Parent Stories from NICU Parent
Shante: My name is Shante and we are having our first ever episode of parent to parent stories from the NICU unit? Tonight, we have with us Penny. Penny had a child in the NICU unit in the March of 2012. Penny, would you care to tell us how you ended up in the NICU unit?
Penny: Sure. I was pregnant with my son, Nate, and at the 20-week ultrasound, everything was fine. At 28 weeks, I went in for routine growth ultrasound from – because I had gestational diabetes, and they found out he had fluid in his chest cavity. From there, I guess four weeks later, he was born, on March 7, 2012, and he went straight to the NICU from the delivery room.
Shante:What did they say caused the fluids in his actual lungs?
It wasn’t in his lungs; it was in the chest cavity, so not like pneumonia but just outside the lungs but still in the pleural cavity, and they don’t know. That will remain a mystery.
Shante:Ah. Can you tell us a little bit about your little one while he was in the NICU? Any kind of personality traits or any kind of funny stories that you have, or fun stories, period?
Penny: He was absolutely full of personality. I have to say when I found out he was going to be delivered, and even though I have a child when – I expected, I guess, kind of more of an – just not – skin and bones is what I expected to have. I was really surprised in the delivery room, and then when he got to the NICU, I mean, immediately, he was just – his eyes were so big, and he was very proportional, just a little, bitty baby. He would respond to voices. When I would go in and sit with him when we were there, his primary nurse was from upstate New York, and when he – when I could hear her voice coming towards us, his eyes would open really big, and he would get – just start looking around because he knew her voice. They tell me he did the same thing when I would come in the unit, if I talked before I got there.
Shante:Okay, I know that’s a big deal. I know that when my son was in the NICU unit, he responded to me Julian, but he didn’t respond to others. So that’s a huge deal, that Nate actually responded to other people’s voices.
Penny: Yeah, I thought so, too. There were several – my daughter, Allison, went to visit him twice a week. She would take huge stacks of books to read to him. She was seven. There were times, and I have a couple pictures, that it looks like he is just looking at her, just listening with everything that he has. Call it coincidence, but I think he was listening to her.
Shante:He probably was. How did Allison handle him being in the NICU unit? How was that for her? How was that as far as seeing her brother in that situation?
Penny: Well, we – since we pretty much knew before he was born that he was going to go to the NICU, we were able to prep her and tell her what was going to happen. Then the NICU staff was really good. The first time Allison came in to see Nate, they covered up a lot of the tubes and things like that. There were some things that were not hidden, but just not right in your face. She handled it really well.
Shante:How did you handle or what would you describe as one of your lower moments while you were in the NICU, one of your sadder moments, not-so-pleasant moments while being in the NICU unit?
Penny: Well, there were several. I mean, obviously the very end was the lowest possible place to be, but along that journey, when Nate was a week old, I still couldn’t drive from my c-section, and so I had a friend take and drop me off at the hospital so I could see him because as I called every morning, he had been taken off of the ventilator and put on a C-PAP, so I was really excited. I went and called – picked up the phone and said who I was there to see, and she said, “Come on back.” From the time it took me to walk through the doors to the desk, she’s like, “Wait a minute; you can’t go back. They’re doing something.” It was interesting because, I don’t know, there was so much emotion built up because I want to get back there. I want to see him, and what do you mean, in the 30 seconds it took me to walk from here to there, now they’re doing something? I had to go back out to the NICU waiting room and wait. There’s what they call a “Book of Hope” out there. I knew that things with Nate – that things may not go well. They may not turn out like I would’ve hoped.
As I was waiting I look through this book and I decided that day that no matter what the outcome I was gona have you know enjoy each day have hopes and have dreams and just like you would for any baby that you brought home if you are spouse to
Actually I liked the way you said that I am gona actually you said two things, that the book of hope and you’re talking about the fact that NICU staff was great for you? What did you lean on the most of the time while you were there people or was it a sin or sculpture or what gave you strength while you were at NICU.
Amm I will have to say my relationship forgot persist upfront UMMM but along with that you know it was there were several people who were taking care of you know are basic needs as a family you know people bought food and that So I didn’t had to worry about. Certainly rules that you need to be focus on Nate but the first day I guess the Tuesday before this Wednesday I am talking about I went in and talked to his primary nurse and you know people from you know the north sometime they are not all touchy –feely like we are in south end .. Yeah you know I like to talk to everybody and so … You know introduce myself and she have actually met me when I was in the hospital from the C-Sectation. But I don’t remember much of that. But the first thing she said to me was don’t ask me any questions if you don’t wana know the truth table. And I remember thinking WOW that’s kinda harsh and that actually was like the best thing ever… Because I knew that I convicted her and she was gona tell me the truth not necessarily in a mean way or harsh but just direct
So you know those were some things
Ummm any kind of song you said that the relationship forgot any songs or anything or any sayings that you would like to share for parents on that?
We were actually bargaining at January I was on a bible study group for women at brook wood church and it’s called WOW and am… I was thought it met women’s on Wednesday because I feel that it’s actually means women of words and they started to bet more study. Well its kinda funny being in school now because I don’t like homework’s I don’t like to have to do extra things and if you have ever done depth more about bible say that there is the a time of home work .
That’s good stuff yes!
And huhaaa so they were doing the book of James and I never liked the book of James because right at off it tells you to choose you way no matter your circumstances which is the penny pare frees version. But umm we were studying that so you know I am going through it not get a lot out of it and that day at doctor’s office when they told me that something was wrong with mate umm you know I started.. The doctor had to go back out for a minute and I was by myself and I started praying and I am thing OK god is gona send me like one of those nice stabs versus that are real comforting and that kind a thing and it wasn’t that.. It was James bond2 that kept coming back to me chose joy. You know no matter what you chose joy and that kept me going while I was in there but didn’t really realize what that the full meaning of until acronym died umm… The other thing was the song that was popular that call the revelation song but by Phillips Craig Dean and personal reason it play through my mind most of the time when I was sitting in there that’s what I was saying to him most of the time.
Yeah that’s actually very powerful thing. That’s very powerful Umm I know for my time that we talked that you are still choosing joy. And it’s evident in the lock that you are showing. Do you have one or two final points that you would like to give it to parents. For parents what may have a child and if you are a parent how have lost their child through NICU journey.
Umm I would say the parents that have a baby and NICU now take the pictures the entire time you were there because you never know whets gona happen I remember thinking wow I have got a lot of pictures of Nate and now over time two years later I am like really I don’t and their struck some days I didn’t take the pictures I wish I would have.
Umm for those parents who may have lost a child in the NICU first of all your journeys is yours don’t let people to tell you when it’s time to be done or when it’s time to start talking about the child. You have to do it the way that you are comfortable with I think that have been my biggest thing is figuring out what way works best for me no matter what other people say. Even people that I am close to and that been very hard but very free at the same time
Well so on my final thought any how like to say thank you for joining us tonight and thank you for sharing the story.