NICU rules

My friend’s wife, Maria, was on bed-rest for the last few months of her twin pregnancy. They live in Cyprus. I’ve been checking in with them on Skype, every other Thursday. It gets down to numbers – be it weeks, days, weight, length, or contractions.

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“30 weeks. Woooo hooooo!”

“So far so good! Maria is doing well. Bored, but fine.” he replied.

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“32 weeks – great news! What’s the latest?”

“Doctor says all is good. We’re aiming for the 22nd of December; 36 weeks.”

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And last Thursday: “34 weeks, how’s it going?”

“We’re scheduled for a C-section in about 3 hours.” They were at the doctor’s clinic, waiting. “The smaller one has plateau’d at 1.7 kilo; the bigger one is 2.4 kilo. The smaller isn’t growing anymore.”

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Friday on the phone with my friend: The little one is doing well. It’s the bigger one though, he cried when he was born, and then suddenly stopped breathing. I was asked to leave the delivery room at that point. They held him upside down. He was blue…I panicked.

I remember the worry that gripped me every time I was asked to leave the NICU. Either Rahul had gone into yet another sleep apnea; for what seemed like a little too long, or they had to set, and then re-set an IV into an already rebellious Leila’s miniscule, 1.2kilo body-weight, hand or foot. The screaming, the suffering you hear from a creature as tiny as she was, through the thickest hospital walls, is heart-wrenching.

My friend and his wife seem to have their emotions under control. I clearly remember that it wasn’t easy to stay level. But I had to, no matter what. I seemed unemotional, distant, “strong”, because otherwise I would break down. That meant I barely spoke to anyone, other than minor, somewhat polite interaction with the medical staff and with my parents and mother-in-law, who had moved to Hong Kong to help me during those 6 weeks, and after. I managed it the best way that I could. That’s it.

I hated my phone more than ever before. I couldn’t stand to see Maher on his. It had to be off in the NICU. And if I wasn’t at the hospital, and it rang – it was one of 3 options: Maher, someone I didn’t really want to go into any detail with, or the NICU. Luckily for us, it was never the last option.

Regardless of the calm my friend has portrayed, I’m contacting him daily, but apprehensively. You never know with this: one day the milk feeds are up, the next day they’ve been stopped because it seems there is a fatal infection brewing in the intestines. One day Twin 1 is moved out of the NICU into the slightly bigger babies room, the next day the baby in the bed next to Twin 2 dies.

One of my initial, harder moments was on a Wednesday afternoon, the third day after the birth. It was the day I left the hospital. I walked out, free after months of bed-rest; but I was leaving my babies behind.

Maria will only see her babies on Sunday, after she is discharged. On Thursday, she gave birth at the clinic, and the babies were rushed off in an ambulance, to an NICU. I realized that what my doctors did, what seemed obvious then, makes much more sense – they put me in an ambulance at the private hospital where I’d spent the last two weeks of my pregnancy, waiting out contractions, so that I could give birth at 31 weeks, at a major, public hospital, that had a state of the art NICU on its 6th floor.  I didn’t see my babies until they were 17 hours old, but they were in boxes, safe, somewhere in the same building.

In the hour after I saw them for the first time, when I saw and heard Rahul cry out – in pain – and I couldn’t do anything, not even just pick him, I realized that I would have to find the deepest of my strengths, love, and compassion to get through this.

She was 2 weeks old when we saw Leila’s face for the first time; Maher and I happened to be next to her incubator when a nurse changed her sunglasses. Both babies had jaundice when they were born, which is quite normal. Leila’s dragged on for a while though. It is treated by phototherapy – a light that shines on the babies – front and back. The babies wear a white mask to protect their eyes. On most babies in this ward, the patches are as big as their faces.

I tried to spend every moment possible with my babies, visiting hours for parents only, were from 9am to 12:30pm, and then from 2pm to 8pm. I spoke to L and R, sang to them – out of tune, and during the week, when Maher was back in Chengdu I played an Mp3 of him singing for them. I caressed them, and when they were stable enough, I clumsily changed their diapers, and even attempted to breastfeed them.

The medical team of this hospital, The Queen Mary, HK, knows what it’s doing. From the moment we arrived – me contracting and making guided decisions in labour, Maher figuring out the administrative details, we knew we were in good hands.

But the NICU staff didn’t always explain a lot to us, nor were they particularly nice. Of course the team is very busy giving life to babies; giving them a second chance. They don’t have time for frantic, lurking parents; at least that’s how we felt at our NICU. They deal with immense fragility scientifically; they attach ventilator’s to tiny babies, insert IV’s, measure and inject milk feeds into a tube that goes straight into the baby’s stomach, and then suck out and measure the undigested material through the same tube, they monitor and record every minute change on a tight, 24-hour schedule. Not easy for any parent to handle. And oh yeah, they let the babies cry.

There was one nurse though, who made the difference. She always smiled. She not only encouraged me to breast-feed, but she also advised me and gave me pamphlets about it. She’s the nurse who organized a parent support group one Sunday afternoon. That meeting opened us up. Her kindness and compassion made my visits a little easier.

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At the NICU in Cyprus, my friends are only allowed to see their babies between 1 and 2 pm, and then again between 5 and 6pm.

A friend of mine had to send her 2 month old baby to an NICU in Chengdu, for pneumonia. No one was allowed in. Full stop.

On the other hand, a friend of mine in the UK would go in to see her baby in the middle of the night be it because she was gripped by anxiety or because she had a strong urge to stay close to her baby.

The NICU rules everywhere seem to differ. What was your NICU experience like? What were the visiting hours? Was the staff pleasant, and helpful towards the parents? Did they encourage breastfeeding? Who was allowed in?

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Natasha lives in Chengdu, China with her husband Maher. She is mum of  twins Leila and Rahul, and was an Ashtanga Yoga teacher until her little yogis became the teachers. You can find more of her thoughts and stories at Our Little Yogis.

 

11 thoughts on “NICU rules

  1. Our boys (born at 34w6d) were in the Neonates unit for almost a month. The nurses and doctors were AMAZING, really couldn’t ask for more from them.
    Parents are able to visit anytime, day or night, and other family members and friends could visit between 4pm and 8pm.
    The staff encouraged breastfeeding, but certainly didn’t push it.

    Oh, this is in Australia :-)

  2. I’m from Australia also, and our experience in the Special Care nursery was awesome. We were allowed in 24/7, immediate family was allowed in with a parent present, we also got permission to bring in quite a few friends over the 2 1/2 weeks we were there. Staff were all helpful and displayed such love and compassion towards our triplets (born 34w 1d), one nurse that I developed a friendship with comes to my house just to see the babies and help out for a few hours! Breastfeeding was encouraged and the nurses did all they could to make sure the mother could suceed.

  3. My girls were in the NICU for 5 and 6 weeks. I live in Minneapolis and was allowed with them 24/7. The week before they were released I lived there. Visitors were allowed at any time, but had to be accompanied by a parent. Breastfeeding was strongly encouraged. I switched my girls to bottle feeding and actually caught some flak for it!

  4. US East Coast…my twins were in the NICU for 8 weeks. Each baby was alllowed 2 visitors at a time, but one had to be a parent. Parents were allowed in at any time except for doctors’ rounds and shift changes. Breastfeeding was encouraged, nurses were helpful in checking latches and situating babies. There was a NICU specific lactation consultant, and there were two pumping rooms with couches and tvs in the NICU itself. The nurses were, for the most part, fabulous. I really bonded with several who were close to my age and had recently had their first babies. The doctors were not so fabulous, there were one or two who were nice, but the others were fairly condescending.
    Oh, and breastfeeding moms got a $5 voucher for the cafeteria every day – that was fantastic, as I was there for at least one meal each day and that saved a lot of money!

  5. My twins were born in Honolulu, Hawaii, and the NICU was wonderful. We could see the babies any time, 24 hours a day, bring in visitors, etc. When I was hospitalized before the birth (for 6 weeks!) my husband could sleep in the room with me. The staff were very attentive, even the food was great- we were lucky.

  6. My girls were in the NICU/step down nursery for 8 days and we were allowed with them 24/7. Once I was released from the hospital, I lived with them. They had a couch in their room that I slept on (our NICU wasn’t one big unit, the babies all had rooms just like regular patients) and a shower in their bathroom. They really encouraged parents to be there whenever they could and encouraged breastfeeding. Sort of. They wanted you to breastfeed but they were also really anal about wanting to measure everything the babies ate. So they would only let me nurse for 15 minutes and follow with formula. Which Did. Not. Help. with the long-term breastfeeding. But I think they tried.

    The thing that really bothered me (and the reason I hardly ever left longer than to get something to eat) was that no one ever held the babies. If the nurses gave them a bottle, they would just prop them up in the isolette and feed them. It would seem to me that if you were going to spend 20 or 30 minutes feeding a baby, you would get them out and hold them. But they don’t. This probably wouldn’t be a big deal for my girls but I can’t imagine a baby that was there for months and didn’t have their parents with them at all times. This was in the Southern US.

  7. I had twins and only one of them had to be in the NICU, and he was there for two weeks. It was so hard to have one at home and one in the hospital. I wasn’t able to spend near as much time as I would have if they were both there.

    I was induced at 37 weeks, as my doctor felt it was the best for the babies. I ended up with a 38 hour labor just to get the first one out because the doctors didn’t want to let me c-section. This is the reason our first twin was a NICU baby at all. The nurses were great, we had one who was very good to us and told us how terrible the delivery was and that she believed it was the reason he was there. She and most of the other nurses were great to explain to us what was going on, tell us about his tests and why he was there.

    We were allowed in there any time we wanted except for one hour in the morning and one hour in the evening and we were allowed a total of three people in there, as long as one of them was a parent. They actually encouraged most parents to be there for rounds so they could hear exactly what was going on with their little ones (they didn’t tell us we could go until the drama of the poor treatment died down and we were starting to look toward the day we could bring our little guy home). They even made us a scrapbook page for each week he was there.

    They encouraged breast feeding to the point where I felt like a bad mom when my milk was delayed (due to a post pardum hemmorage) and kept promising that a lactation specialist would come talk to me, we met her as we were scrubbing in on the day we brought our baby home and she told me that after 14 days you get what you are going to get and basically told me to give up.

  8. Our twins were born at 36/3 after 4mos. of BR. They were in the NICU 4 days and discharged home with me. They told us days later that our dtr. had stopped breathing 2x that first day. Thank God they didn’t tell us at the time. Nurses were wonderful, visits were allowed 24/7 but I had eclampsia so I was a bit of a mess. All around very calming NICU. We were very lucky in many ways. Still are.

  9. My twins were born at 34w 3d in Greece. One of them came home with me when I left the hospital, the other stayed in NICU for two weeks. My experience was more like your Cypriot friend’s, we were only allowed to see him for half an hour at noon and half an hour in the evening. Only parents were allowed, no other family members or friends. The nurses were really nice in the brief time we had to observe them, but breastfeeding wasn’t really encouraged.

    While I’m grateful for the care my son got this was one of the most heartbreaking times of my life, not being able to spend much time with my newborn boy. I wish they would change the NICU visiting rules in this country, it’s just too painful.

  10. I was lucky. My twins were born at 35 weeks after 3 months on bed rest. I was also lucky that they were able to come home with me when I was discharged. 2 1/2 weeks later we were rushing my son to Children’s hospital Boston and then a week later my daughter was admitted both with RSV. They were in the NICU for 3 and 2 weeks respectively. I had a great experience while they were in the NICU. When it was just my son, the drs. and the nurses answered my multiple concerns about what to watch for in my daughter. When my daughter was admitted, they had both babies in the same area (like a semi-private room) so that we could bring our 11 month old with us. It was a horrible time, but I am so happy I live so close to Children’s hospital Boston!

  11. Pingback: From the Archives: Prematurity and the NICU - How Do You Do It?

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