Preemie parents I need your help!

[prem design]

Hello,

I am a fourth year creative industries student. In my final year I have chosen to target medical equipment, especially equipment used in medical procedures performed on children. I feel that there is much that can be done in the redesign of equipment, to reduce, if not eliminate its alien and intimidating nature.

My research thus far has compelled me to concentrate on the relationship between premature babies and their mothers to see if redesign within neonatal units could relive the emotional burden parents of premature babies experience.

If you are the parent of a premature baby or have spent time in a neonatal unit as family of a premature baby I would very much appreciate your response.

I am considering the possibilities of incorporation the principles of Kangaroo care into a portable or 'cuddable' incubator.

Below is a questionnaire. Again your answers would be invaluable to the success of the design.

Thank you for any help.

Charlotte Cripps


Was it a shock to you that your baby was born prematurely? If not how prepared were you?

After you gave birth how long was it before you got to hold your baby? Why did you have to wait this long?

As a parent what where you allowed/ asked to do in caring for your baby?

How long was it before you were allowed to take your babies out of their incubator?

On a scale from 1 to 5 (5 being the most difficult) how difficult did you find it to take your baby in and out of their incubator? What made it this difficult?

Did you and your other half practice kangaroo care? If so was this under the direction of a health professional?

Did you feel that kangaroo care was beneficial to you and your baby? Why or why not?

Was it comfortable to hold your baby in the kangaroo care position? Why or Why not?

What was the hardest part about having a premature baby? Did you do anything specifically to help you deal with the situation?

 

[Marleysgirl]

Will reply by PM. Whoops, can't!

Was it a shock to you that your baby was born prematurely? If not how prepared were you?

We knew Andrew would be prem, but the estimate was 4-6 weeks, when in fact he was 11 weeks early. We had about a week's notice of his arrival, so mentally we had a little time to prepare. In terms of practicalities, his nursery was ready very early but that was due to our excitement!

After you gave birth how long was it before you got to hold your baby? Why did you have to wait this long?

I had to wait about 36 hours. I was taken to see him in a wheelchair after 12 hours, but was recovering from a caesarean and pretty weak, so they wouldn't let me cuddle until the next day.

As a parent what where you allowed/ asked to do in caring for your baby?

We do mouth & eye care, change his nappy, and now dress him.

How long was it before you were allowed to take your babies out of their incubator?

Not sure whether you mean us being allowed to do the "taking out" or whether your're asking about cuddles! We still don't do the actual lifting to take Andrew from his inci because of all the monitors & tubes (O2 & feeding). Cuddles started after 36 hours as mentioned earlier.

On a scale from 1 to 5 (5 being the most difficult) how difficult did you find it to take your baby in and out of their incubator? What made it this difficult?

Ah, perhaps this clarifies the previous question! I'd rate it about a 3/5, not easy but not too difficult. Our inci's have "holes" at the sides and in the centre of the ends through which tubes and monitor wires can be fed; problems arose when nurses fed tubes (eg Cpap) through a different hole and the tubes couldn't be freed up when moving baby. All tubes & monitor wires should be fed through holes in the sides of the inci so that they are freed when the side is dropped.

Still it's not easy, as then baby is put into your arms or onto your chest with heavy wires and tubes draped between him and the monitors, you have to be careful that they don't pull down on him and don't become trapped.

As I've mentioned previously, can consideration be given to the monitor wires going to a small wireless device, rather than baby being "hard-wired" to the monitors?

Did you and your other half practice kangaroo care? If so was this under the direction of a health professional?

As in, did the nurse put baby in the right position on me for such a cuddle? Yes. But kangaroo (skin to skin) wasn't offered until baby was a couple of weeks old, he was held in a normal arm cuddle before then. It took a nurse with a particular interest in kangaroo care to suggest it, I hadn't liked to ask as I wasn't sure if baby was too fragile due to his small size.

Did you feel that kangaroo care was beneficial to you and your baby? Why or why not?

Feels nice, and he's certainly more stable when cuddled that way. But it hasn't particularly helped with milk production or feeding.

Was it comfortable to hold your baby in the kangaroo care position? Why or Why not?

Yes, I suspect this is helped in my unit by the good seating available (low chairs with angled backs).

What was the hardest part about having a premature baby? Did you do anything specifically to help you deal with the situation?

His fragility at the start scared me. I wish I was encouraged to handle him more from the start, such as nappy changes, as confidence has come with practice - he wasn't fragile, just really small. The hardest part now is the practicality of visiting him - travelling up by public transport whilst me c/section healed, etc.

Oh, and as I've moaned before, getting access to the unit outside of office working hours! Some secure pass system really needs to be considered.

In these days of technology & digital communication, perhaps SCBUs should start thinking about webcams etc, providing parents with the ability to "look in" on their baby from home. I think it'll come with time ....

 

[hopedance]

Was it a shock to you that your baby was born prematurely? If not how prepared were you?

it wasn't a shock, i was admitted to hospital at 27 weeks with severe pre-eclampsia. i was being monitored very closely, the doctors told me they only expected me to last 3 weeks or so. sam was born at 30 weeks, so exactly what we expected really.


After you gave birth how long was it before you got to hold your baby? Why did you have to wait this long?

it wasn't long at all, i had the c-section at 4.30pm, and that evening i was taken down to see him in nicu and got a cuddle from my wheelchair.

As a parent what where you allowed/ asked to do in caring for your baby?

we asked to do as much as possible, so from the very start we did his tube feeds and cares (nappies and washing), and after about a week we were taught how to take him in and out of the incubator ourselves, how to reattach new heart monitor wires, how to turn him and position him, and so on.

How long was it before you were allowed to take your babies out of their incubator?
not sure what this means? i started lifting him out about a week after he was born, if you mean at all - i held him a few hours after he was born.

On a scale from 1 to 5 (5 being the most difficult) how difficult did you find it to take your baby in and out of their incubator? What made it this difficult?

it was pretty easy actually, managing all the wires and tubes was sometimes a challenge but the nurses taught us how to hold the wires as we lifted him and which ones we could disconnect and so on.

Did you and your other half practice kangaroo care? If so was this under the direction of a health professional?

we did, yes. the nurses encouraged us to, and i loved it.

Did you feel that kangaroo care was beneficial to you and your baby? Why or why not?

yes it was lovely, i felt quite distant from him when he was in the incubator, so having kangaroo cuddles was wonderful. i still carry him everywhere in his sling now.

Was it comfortable to hold your baby in the kangaroo care position? Why or Why not?

yes it was the best position, we spent hours and hours like it.

What was the hardest part about having a premature baby? Did you do anything specifically to help you deal with the situation?

the hardest part for me was having to travel in and out from home to hospital every day. because of my c-section i wasn't allowed to drive for 6 weeks, so i was getting the bus despite being in quite a lot of pain. i used to have to sit down in the street sometimes to recover from the pain before i could carry on walking, but i was determined to get in there to see him no matter what.

 

[Foogirl]

Was it a shock to you that your baby was born prematurely? If not how prepared were you?
Not really, we knew there was a risk, howver, we were surprised at how early she was.

After you gave birth how long was it before you got to hold your baby? Why did you have to wait this long?
About 18 hours. I'm not sure what the problem was, but they seemed to forget about me and it was a passing consultant (not mine) who arranged it after I mentioned it to him. I did need to be transported in a wheelchair but it could / should have happened sooner.

As a parent what where you allowed/ asked to do in caring for your baby?
After the first week we were showed how to do her "care" - washing her face, changing her nappy etc. We were also shown how to tube feed her a few days after that.

How long was it before you were allowed to take your babies out of their incubator? After about 3 or 4 days she was taken out by the nurses. We were never allowed to take her out ourselves.

On a scale from 1 to 5 (5 being the most difficult) how difficult did you find it to take your baby in and out of their incubator? What made it this difficult?
As we were never allowed to do it, I can only guess that it wouldn't have been easy because of the wires for monitoring her, the fact I could never find a comfortable height for the incubator and the fact she was so wee!

Did you and your other half practice kangaroo care? If so was this under the direction of a health professional? I only did it a couple of times and only when I was offered it. On occasions I was offered it by the nurses wrapped her in a blanket and handed her to us for a normal cuddle.
Did you feel that kangaroo care was beneficial to you and your baby? Why or why not? I don't think it was particularly benefical to her as she slept all the time. I did enjoy it but I don't think it was of any other benefit - eg my milk was already flowing well.
Was it comfortable to hold your baby in the kangaroo care position? Why or Why not?It was ok, but depended on the clothing I was wearing. Having some kind of gown to change in to would have helped.
What was the hardest part about having a premature baby? Did you do anything specifically to help you deal with the situation?
Leaving her there every day and having to travel such long distances to get there. There wasn't much we could do but tended to go late afternoon, have supper out near the hospital, then go back at night.

I agree with Marley about webcams. For those 3am wakings when I was at my lowest, being able to see her would have really have helped.