Category: NICU

Don’t Call Me Mum

As I was standing at the hospital blood clinic today with one of my kids, the lab technician tut-tutted me for not having signed in properly.  “Didn’t you go to registration, Mum?”  It occurred to me that since my kids started having more contact with the health care system, I have been called “Mum” by receptionists, clinicians, specialists, nurses, and therapists. I’ve been called “Mum” by people wielding needles, ultrasound wands, lunch trays, pulse-oxometers, and even people strapping my children into restraints for chest x-rays. In short, I am being called “mum” by many people who never spent time in my uterus and have no other legal or moral claim on my maternal affections.

It doesn’t always bother me.  Frankly, when I am being called “Mum” by these folks, I often have bigger things to worry about.  But I found it particularly irritating today.  What does it say to me?

It says “I can’t be bothered to glance at the portion of your child’s chart that contains your name. ”

It say “I’m not going to bother asking your name and then trying to remember it for the duration of this conversation. I will probably forget your child’s name, and all about your child, a minute after you leave.”

It says “I’m going to talk to you the way your child talks to you rather than speak to you as though we’re on the same level and partners in this care.”

In some cases I am having serious conversations about my child’s respiratory rate, or her oxygen levels, or the amount of spasticity in her body, and in those cases I really hate being called “Mum.” Don’t prognosticate on my child’s future and then fail to ask my name.

I’m not always offended by it.  Some NICU nurses called me “Mum” as they brought blankets, or helped me find a bath to wash a tiny four-pounder. They may have been someone walking by and helping out, not someone who spent a shift caring one-on-two for my girls.  And I think they were using the word to remind me that, despite all the tubes and the fact that I had to ask where diapers or towels were, I was the mother.

But there should be a rule – if you will be having a conversation that’s important, and that includes almost any conversation in the medical realm, ask my name. If you’re having an informal exchange, or scolding me because I didn’t register, or didn’t understand, don’t condescend to me and call me “Mum.”  And if you’re not sure, don’t do it.

Turning Two

I can’t believe my “babies” are on the verge of two. When I look back at this picture, I still remember the smells of the Neonatal Intensive Care Unit so clearly. There was the soap, and iodine and hand sanitizer. That hand sanitizer always sends me right back to 2013. And then there was the plasticky smell of the breathing masks. There was the smell of the harsh chemical wipes we used to sanitize those big pleather chairs, which we shared. Sometimes there were no big comfy chairs, and you had to wait, hoping some other mother would leave her baby so you could settle in for a snuggle. Then there was the smell of the rubber gloves we wore when handling the wipes to sanitize those chairs. There was the comforting smell of those freshly-laundered yellow towels. The nurses often warmed them up in the microwave to keep us toasty. Somewhere under it all, there was tiny baby smell, buried under cotton hats and masques and Pampers that went up to their armpits.

Flashback

I think they were both on CPAP by the time this was taken, and I can still hear the burbling noise of the Bubble CPAP machines. There was the feel of little squirmy baby limbs, which I should have been feeling somewhere on the inside instead of out, and the little foamy mouths from the CPAP. There was the hum of the feeding machines with a big syringe of yellow milk. For B that machine would compress that syringe over two hours or 90 minutes, as her tiny tummy could not handle it any faster. This picture sends me right back there. I can’t believe they’re two.

Light at the End of the Tunnel

After being separated so abruptly, and being apart for so long, neither C nor I want to be very far from each other.

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In the hospital, she mostly only woke to feed and always settled quite easily with a soother.  But as the nurses say, “Babies are smart.”  It didn’t take C very long to figure out that if she fusses with a bit of consistency, I will pick her up and she gets to snooze in my lap instead of a pack and play.  Unlike my first two, so far she does not need to be rocked, or shushed, or bounced to quiet down.  She just needs a snuggle, and any position will do – lying on my chest while I watch 30 Rock, cradled in my arm as I unload the dishwasher, or sprawled on my lap as I sit at the computer table.

P and M love having her nearby too, and and I’m willing to bet that she is the most-kissed baby in the universe.

We are hoping to spring Bea later this week and I am so much looking forward to a time when the three of us are together again and the hospital is not a part of our daily routine.  We’ll still be there pretty often for follow-up, but at least it won’t be a daily thing.  There are some wonderful people there, but I never wanted to become an expert on newborn infections, or overhear conversations about babies who will never be able to swallow food on their own.

I also won’t miss watching the mountains of healthy twins come into the Intermediate Nursery.  There seems to be at least one set of 34-weekers that come through every day. What an enormous difference those few weeks make.  I can’t help but feel a little jealous when I know that they will be there for only a few days or a week and will likely suffer none of the interventions or health issues that my girls have as a result of being two and a half months early.

It is pretty interesting to hear what people name their children.  In the NICU, they have poignant names like “Precious” or “Angel” or “Hope”.  In the IN, I have learned that people like to name their twins with matching first letters, or better yet – with names that rhyme.

Bea: she’s thinking “Well, it sucks that I was born over 2 months early, but at least she didn’t name us Cora and Lora.”

 

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One Down, One to Go

Having one baby home has been such a wonderful relief.  She’s such a sweet little thing, giving her delicious sleepy smiles.  She’s also alert a lot more than in the hospital, listening to us chat or sing.

The homecoming was only marred by B having a rough patch in the hospital.  She was having numerous desats, including a significant “blue” episode where she needed to be revived with oxygen.  They were doing all kinds of tests to rule out infection and other issues, but so far nothing has turned up.  We think that it was just that she is quite anemic and tires too easily.  My own hunch is that she has very sensitive tummy.  She seemed horribly uncomfortable when they switched her fortifier, and as a result spent far too much time squirming and moaning and not enough time sleeping so she just kind of crashed after a few days.  Thankfully she has put on some weight in the last few days even with them taking her off the fortifier, so hopefully she is now strong enough to go back to exclusive oral feeds and then come home.

To think at the beginning of last month they weren’t eating at all and were still getting airway support… they’ve come a long way already!

C’s Homecoming

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For obvious reasons, today was all about C, who got to come home!  It’s so incredibly wonderful to enjoy her away from the files detailing her medical issues, the monitors and the constant buzz of people.  Just a snoozy little baby snuggling up in the crib (when the big brother and sister aren’t fighting over her, kissing her, or affectionately calling her “birthmark-y” – She does have quite a few, but I’m gently trying to discourage that moniker!)

But I also wanted to shout out to Bea, who had her NG tube removed yesterday.

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My gosh, how different her little face looks from a few weeks ago. Now if she would just start gaining and stop those darn bradys, she could come home too.

Sleepover Photos

So I had my night in the hospital and it went very well.   She did all the normal newborn stuff – waking to feed at reasonable intervals.  She went back down quite easily in her cot too.  I hope she does that at home!

The kids came for a pajama party before heading home for the night.  P & B had some great snuggles:

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Our FOUR children (!!!)

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Wheeling C out of the nursery into the family room.

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The kids wrestled over the baby quite a bit when we got back to the family room.  They each wanted to hold her little wobbly neck.  When they lay down (briefly! they didn’t sleep there!) there was a lot of negotiating of who got to be on the “face” side. It nearly gave J a heart attack.

I’m trying to imagine what C is thinking here… “Are you sure you should be letting him hold me? Is this what home is going to be like? Cause if so, I think I’ll stay with B.”

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But eventually they all settled down.

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Sleepover!

Cora and I are having a sleepover at the hospital! C has now been bottling and nursing for several days so she is more or less ready to come home. Little Miss B is still not quite ready, but she must have heard that her big sis was coming home because she has ramped up the eating a bit in the last few days.

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As eager as I am to get them home it is a little nerve wracking. It’s still a month before their due date, and I’m used to a monitor telling me if they’re okay, or a nurse nearby who can tell me when they were last changed or fed. To ease this transition, they are letting me room in at the parent room with Miss C. So we get a sleepover! Little girl is blissed out in my arms right now – no beeping, no one around – our first time ever with just the two of us.

If all goes well Miss C could be home by the weekend.

Not Quite Yet

I realised this morning after chatting with the paediatrician that the homecoming is not as imminent as I hoped.  Their feeding is not where it needs to be yet and even though C can do a couple of oral feeds a few in a row, she’ll have to prove herself over a few days.  Realistically, I think we’re at least two weeks away, and we still face the possibility of transfer.

Also, B had several “bradys” today where her heart slowed down and then her oxygen level drops.  It’s very common in prems, but she needs to be entirely free of those before homecoming.  The doctor heard a new murmur, so they ordered a whole slew of heart testing, including an ECG and an echocardiogram.  When the docs came by on rounds I said “I’m a bit worried, so please tell me what you hopefully didn’t find.”  The cardiologist said “All you need to worry about it is how little sleep you’re going to get when she comes home.”  Phew.  She put on some weight though – up over 2 kilos now.

Both girls are more awake and alert now too – and they get mad when they are not being held, which is lovely.

Please do send some good thoughts to all NICU babies tonight.  It was packed tonight – there are 61 babies right now for 60 beds, and lots of them are very ill.

Feeders and Growers

So they were going to move the girls to a new hospital downtown, but then I had a sobbing breakdown on rounds about how anxious I was about the move.  Not sure if it was coincidental or not, but the move didn’t happen and instead we got moved again to an intermediate nursery in the same hospital for “feeders and growers.”  The move still may happen, but it bought us some time.

A paediatrician does the rounds in the new nursery rather than the neonatologist.  She said the only thing keeping them there now is their need to feed orally.  In the NICU, they prefer that you get breastfeeding established first before introducing a bottle, but in this nursery they just started bottle feeding my milk to them.  I was a little surprised by that, but if bottling means they come home faster, I’m happy to have them bottled, especially since I cannot physically be there all day to feed them, so they have to take a bottle if they want to lose the gavage tube.

The nurse today even said something about how maybe if they did well on the bottle, the paediatrician would decide to let them come home this weekend or early next week.  I almost fell over from shock as I fully expected us to be there another couple of weeks.  I have no idea if the nurse’s comment was realistic or just an off-the-cuff comment, but it did make me realise how unprepared I am.  I only bought two things during the pregnancy – two sleepers on the day my water broke back in February!  I have lots of clothes for them, and a crib, but virtually nothing else.

twins

I will be buying new carseats, as I need ones that will go down to 4lb to accommodate very tiny babies.  I do not want them there an hour longer than they have to be because of a failed “car seat test.”

But if you live nearby and have a bassinette or bouncy chair that is not being used, I would gladly borrow or buy it off you.

Good Times

Lots of positive moments in the last few days. The (bigger!) kids had a couple of nice visits at the NICU. The doctors are starting to murmur about “home” as if it’s somewhere on the not-too distant horizon. We may be transferred to another hospital first to free up beds for more critical infants, but fingers crossed that they’re ready to come home before that happens.

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Other nice moments: I gave the girls baths. One of the senior neonatologists was quite encouraging on rounds. C’s head circumference is growing but so far it appears to be just normal growth as opposed to anything too concerning.  Oh, and tonight at 9 p.m. tonight both girls took a “full feed” while nursing, which means they did not need to be topped up via their feeding tube. C did it this morning as well. B was progressing a little more slowly – she did a little yesterday, but then last night she couldn’t coordinate the breathing and sucking so her oxygen level dropped and we had to take a break. This morning she wouldn’t latch at all as she was too tired. And then bam – full feed tonight. So that was very exciting.

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In this picture, M was either worried the babies were sad because their mouths were frowny, or pissed that C was not looking at her – I can’t remember which it was at the time.

hands

That’s a not-quite three year old hand which covers B’s whole head.  It’s funny how a 9-lb baby looks like a giant to me now.