Insufficient preparation/Knowledge
(75%, 79%) |
When they checked us out [of hospital], we knew like how to carry him in the car seat. I knew physically what to do. But I didn’t know emotionally how I would be different. Mo 7 Neither of our families have ever really dealt with something like this. So it was all just so new, you know? Like she has a very serious condition…that was very difficult to process or understand…And just being so far [from home], just out of our element. Fa 20
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Unrealized expectations
(55%, 50%) |
I went in wanting to know if it was a boy or girl. I didn’t want to find out there was anything wrong…It wasn’t normal for me to have a baby that had something wrong…I took all of my babies home within 2 days, not hooked to monitors, not having feeding tubes, not having oxygen. Mo 14 The 3 pediatricians that saw him in the hospital, saying he was A-okay, completely healthy… one week later he’s in a helicopter to the hospital. Fa 10
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Self-blame/Questioning why
(40%, 43%) |
I was blaming myself for a lot of things…What did I do wrong for him to be this way? Like I just feel like what did I do that my son’s so sick? Mo 11 I asked the Lord, I said, God, did I offend you in any kind of way? Did I do anything? If I offended you in any kind of way, not him, let it be me. Fa 13
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Potential for negative outcomes
(70%, 50%) |
After [child]’s surgery, I was scared to touch her because I didn’t know if I was gonna hurt her or what, because I knew they sewed her up and stuff, but I didn’t know if like patting her was gonna hurt…I don’t want to break her. Mo 21 Fear of the worst. You know, we could be leaving this hospital without a child. I think that was like the most overpowering of all, just that fear of the unknown. Fa 7
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Medical/developmental complications
(40%, 50%) |
It was stressful ‘cause he wouldn’t talk, he wouldn’t look at you…and I’m his mom. He should be able to look at me. It was very difficult for like the first year…I’d say [child] and he’d rock back and forth. Mo 13 We were about to be let go [to home], and then they said that we couldn’t go because…they found out that he had an infection, and then they had to take him back to intensive care…we were not prepared for that. Fa 10
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Alterations to parental role
(80%, 86%) |
Not being able to hold [child] for like a month after he was born. I was there day in and day out…I stood there and watched him crash right in front of me. I just had to step away from the bed and let the doctors just rush to him, because there’s nothing I can do. Mo 2 Seeing him in the ICU. That was the most difficult time because he’s just so little and, you know, your job is to protect him and…just feeling that you can’t help him. Fa 7
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Appearance of infant/equipment
(40%, 36%) |
They were packing all of the equipment and I was just looking at them like you need all of that? He’s going to be fine. You need oxygen and the CPR stuff? Um… I think that was the worst. Mo 14 We go into the recovery room…that was devastating. You go in and see your child, you know, hooked up to all kinds of stuff and it’s just…I was as prepared as I could be, but nothing really prepares you for that. Fa 19
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Healthcare provider communication issues
(45%, 21%) |
Some of the nurses didn’t talk much and so we didn’t know everything about what was going on unless we asked a lot of questions. It was better for us if the nurse told us everything like what she’s doing and what is going on. Mo 16. I kept going out there. I’m like something is wrong with [child]…and they’re like, no, it’s just normal, you know, blah, blah…[His lungs] got infected and they ended up having to put a drain tube in. We would have went through so much less if they would have just listened. Fa 2
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Mistrust of healthcare providers
(30%, 50%) |
When he first came home, he had an episode… he was like foaming from the mouth and he could hardly breathe. I rushed him to [local hospital]…I had his chart explaining everything but they freaked out. They were just trying to poke all over him… I just finally picked him up and was like don’t touch him. Mo 4 I thought it’s a mistake or something…like it should be fixed in one surgery only…But why she’s needing a second surgery? Fa 5
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Problems with support network
(75%, 50%) |
Because [partner] is overwhelmed about something or whatnot, he’ll leave and then I’m just by myself. So I feel sometimes that I’m the only caretaker for my children. Mo 11 A couple of work colleagues…were trying to be helpful, but in doing so they were prying and a lot of the stuff we didn’t feel comfortable discussing with them. So while they had good intentions…by asking questions they were actually creating a more stressful situation. Fa 15
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Insufficient finances/resources
(90%, 50%) |
Buying the stuff for him to drink, to thicken it. And then his clothes, I mean I was always having to cut a hole in something because of his feeding tube. Different toys, like different things for him to be in because he had to learn how to walk three different times because of the surgery from being in a bed for so long. Mo 4 Not having [spouse] income put everything on me…hospital food is really not that cheap…I didn’t really think about how with [child] being born that all of the bills would come down to me. Fa 2
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Parenting burden
(90%, 64%) |
Any little thing would make her sick, we would be in the hospital for a week or two. If she got the little sniffles, we would be right back in the hospital. Mo 12 The medical insurance was a whole other stress…sometimes the insurance would not take some of the billing from the hospital…it was kind of confusing when you got these bills, and you’re like, what’s going on? Aren’t we supposed to be covered? It was a huge mess. I mean it took a lot to try to clear all that. Fa 10
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Balancing responsibilities
(60%, 64%) |
Being a single mom, with one in the hospital and one at home, and trying to do what you have to do as a mother…at nighttime sometimes I would leave [hospital] and come back in the morning or I would leave after he takes his first nap and then come back in the evening. So I had a full schedule. Mo 4 While mom was here and baby was here they got support and they got help, but I was pretty much fending for myself. Fa 15
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