Parent 2 Parent Stories from NICU Parent

Sara

Shante: My name is Shante and we are having our another episode of parent to parent stories from the NICU unit.
Hello we have Sarah with us today from Parents –Parents connecting with NICU parents. Sarah, how are you doing?

Sarah: I’m great! How are you doing?

 

Shante: I’m doing pretty good. Today we’re gonna talk about Sarah’s NICU journey and Sarah had her NICU journey a little while ago; it was back April/May of 2007. Do you care to share with us any about that?

 

Sarah: I’d be glad to. Our NICU journey started actually probably back in our pregnancy. We found out that our son was going to be born with a congenital heart defect and we knew after birth that he was going to require open heart surgery. Things happened a little differently, we didn’t actually expect to be in the NICU, we expected to go ahead and come home, bring him home that night. You know when they released us from the hospital. They had him maybe six days a week. Then head down to Charleston for his surgery and you know to go through that. After he was born he was unstable, things were a little more severe than they anticipated and thus began our NICU journey.

 

Immediately after he was born, they kind of whisked him away. We just got to hold him for just a minute; they took him away down to NICU and it was about four hours later before I actually got to see him. They kind of wheeled me in, I was in a wheelchair, couldn’t walk it and I got to see him laying there in the open crib which at the time I thought ‘ok, the open crib, that’s a good thing, you know’ But the open crib is for more critical and then they go to the Isolette. So I thought things aren’t quite as bad as you know it seemed and here’s this big, because he was 38 weeks when he was born. So here’s our big, fat baby laying in this room with all these really tiny fragile children. So our experience was a little different in that our baby looked healthy but was not at all stable, he was just as unstable as any other with issues and stuff.

 

So we spent 11 days in the NICU at Spartanburg and Kayden was life flighted to Charleston on day 11. He wasn’t stable enough to ride an ambulance and was life flighted to Charleston. And from there went straight to an ICU area and had open heart surgery three days later. So at 14 days total he had his open heart surgery. Ours was a brief stint in the NICU but it was a different perspective in that ours wasn’t a premature birth it was a full term birth with major critical health issues.

 

So I hope that our experience will give kind of a different perspective maybe to some mums who feel like we don’t belong in part of that NICU group, we don’t belong as part of that struggle with a premature child. You know every families story and every families experience is unique to them and it’s just as hard for one family to get through the premature as it is as for another family to go through a critical medical issue. So I hope that other mums feel ok with their experience like when they’re feeling bad, when they look back and have a that feeling of the sadness and the overwhelming aspect of having a child in the NICU.

Shante: How did you handle your low moments in the NICU and what would you describe as one of your low moments in the NICU and that sounded like a very short stint but it sounded like a very intense stint as well, to have to go through all of that in 11 days.

 

Sarah: Yea, the worst moment for me was leaving the hospital without my baby. We had two older children so I’ve gone through you know the joyous walking out the door with your new baby and putting him in the car seat and taking him home and you know everything being ok. They’re normal and so leaving the hospital empty handed that first day, was I think was really the hardest not being able to be there, having someone else caring for him. And I’ll be honest; the only way that I got through most of those days was the prayer of family and friends. I absolutely know there are even days I could not get myself out of bed and it was just by the grace of god that I was able to get up and you know take care of my other children and get myself ready and get to the hospital and take care of him as much as I could during that time and it was extremely intense because every shift change something would happen, every doctors round, there was a new update, there was something else, there was a constant, ‘we’re gonna fly him out on day three, but we cant fly him out on day 3 so we’re gonna keep him here and then we’re going to fly him out maybe on day 4 and then that morning, well it’ll probably be this evening’. So there was a constant back and forth is he gonna go to Charleston? Is he going to stay here? What do we need to do? How do we plan? You know it was really living moment to moment for those 11 days. Not sure when we needed to pick up and go or stay or you know how to handle our lives.

 

Shante: While on Charleston, I have actually have two questions- Who was there for you for support Charleston and also while on Charleston, where did you stay? Did you stay in Charleston the whole time or were you back in this area?

 

Sarah: We did not have a big support network; I mean we had our close friends and family. My husbands a very private person and during that time we just didn’t know what to expect, we didn’t have anyone to talk to and we didn’t really have any friends or family or know anyone who had gone through it and of course this is 2007 so you know MySpace had just started, there was no Facebook. Every mum under the sun wasn’t blogging. It wasn’t easy to find help or support and we really just didn’t have much to go on and for us the prognosis was, the doctor’s were telling us ‘Oh, we’re going to get through this, we do this all the time’. But you know for us in our hearts, we had not experienced it; we didn’t know anyone who had experienced it. So for our family, it was just a dark, a very dark time for us. We didn’t have a lot of support.

 

You asked me a second part and I forgot now because

 

Shante: No you’re fine; I asked where’d you stay while you were in the area?

 

S: We actually got a hotel room for when we were in Charleston for about a week, maybe a little over a week, maybe 9 days. We were in Charleston and we just ended up paying for our hotel room cause it was myself, my husband and our older two children, so …. House isn’t set up for a family(8.27) it’s more set up for a parent or maybe two parents, but its not setup for an entire family to live there for a long amount of time. And there weren’t a whole lot of resources, there were places to go, so we ended up just staying in a hotel for a long amount of time that we were down there. So coming and going to the hospital you know back and forth fairly quickly.

 

Shante: What are some of your happier moments in the NICU Unit? If you had to say you know you had a happy moment especially with him being in an ICU situation the whole time. What would be classified as a happy moment?

 

Sarah: When our older kids were able to come in and meet their brother for the first time. That was probably one of the best experiences to see them be able to be a part of his life and his birth. You know I think he was probably four days old before they got to meet him or see him. So that was probably one of the happier times so just being able to go in and sit and take him out of his Isolette And just to hold him, I mean just hold him there in your arms and having him respond to you and kind of open his eyes and you know feel like a mum to your child you know. Because you don’t feel like a mum when they’re hooked up to a hundred wires and machines beeping at you every time you try to touch him. You don’t feel like a parent, you feel like a third party to you know Healthcare.