Changing Expectations

When I was pregnant with M, her ultrasound showed some abnormalities which indicated a higher than average risk of Down Syndrome. After some further investigation, we were told the risk probably wasn’t that high, and we opted not to do any definitive testing. Needless to say, I couldn’t put it out of my mind entirely and I thought about it a lot during the pregnancy. Obviously, she does not have Down Syndrome, though she did require a bit of follow-up into one of her issues after birth. She needed an ultrasound which would tell us if she needed surgery, or just monitoring, or if the issue had resolved. The test was done at Children’s and didn’t take very long, though I was quite nervous. The ultrasound tech had me wait, and came back five minutes later to tell me all was well. I have a vivid memory of the hour afterward. I went to the Starbucks at the hospital, so relieved that my girl would not need an operation. I sat there sipping a latte and feeling so grateful that I wouldn’t have to come back to that coffee shop for a long, long time. We were tourists at Children’s, unlike the many parents there who knew it well.

Three years later, I did become that parent – not the tourist, but the regular. Bea was in the hospital for 55 days (Cora 44), and I was there for 53 of them. Walking around between cuddle sessions at the NICU, I’d recognise three or four people – mostly nurses, or other moms, or people who’d been involved in the pregnancy. They knew my name at the hospital Starbucks, and my order. When I check in now for an appointment or test they pull out a map and say, “To get to Radiology you go…” I stop them right there. I know where Radiology is. I know where the Blood Lab is. I know when the coffee shop has its coupon giveaways or what time the breakfast special at the cafeteria finishes. I recognise the janitorial staff. I know where the physio offices are and where they used to be before they moved. Children’s is attached to Women’s Hospital and that hospital place well now too, having visited once or twice a week for two months.

I was there again this week as C was having a hip ultrasound. I popped by the NICU briefly to see if any familiar faces were around. I didn’t see anyone and left, but walking down the hall I saw a mother who I recognised. Even when my girls were brand-new, she seemed like she had been there a while.

My girls have been home now for longer than they were in. That’s hard to imagine because the NICU time seemed so interminable, and the time since they have gotten home has flown by. As they say “I don’t know what the future holds” but right now is good. I’ve taken my babies to the park. I wake up with them each morning. I get to take them out to eat or the frickin’ PNE. I get to see every smile. And so we might become frequent fliers at the hospital. I might pass that coffee shop several times a month. But right now I am grateful for other things.

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


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.


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:


Our FOUR children (!!!)


Wheeling C out of the nursery into the family room.


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.”


But eventually they all settled down.




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.

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.


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.


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.


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.


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.

Only Miss the Sun When It Starts to Snow

As I was driving to the hospital this morning a song came on the radio and I felt so optimistic. I thought, perhaps there is a silver lining in this journey. I mean, isn’t it true that you can’t know happiness until you’ve known some sadness? And there is hope!

And I held onto that feeling all day until I came home. Over dinner, I listened to the song again, but this time I felt utterly defeated. I just want to scream, “How, how, how, did this HAPPEN?”

During my whole bedrest, I was always optimistic. I mean, I had low moments but for the most part I felt like we were going to beat the odds. I was confident we’d get them to viability and beyond, even though every academic article on the issue said that was an extreme long shot. I was able to rationalise every statistic and why it didn’t apply to us. We did beat those odds. But then on Day 3 of life we had a devastating event, and the result was this bleed, which is extraordinarily rare at 30 weeks. Now that I’ve played those odds and lost, I feel like I’ve lost a lot of my optimism. When they say “She has a 70% chance of x” as if that’s a good thing, I can’t help but dwell on the 30%. And when they say there are things she may never achieve… well, I get stuck there. It’s very hard too, because we have been told different things – some people just frame the prognosis so much more pessimistically than others.

I need to get back in the “We are not a statistic” mindset. There ARE good stories out there, optimistic stories with happy endings. Google tells me so!

And at the end of the day, maybe I was crazy to think we’d get out unscathed. 95% of 30-week babies survive, but that still means that 5% don’t, and I’ve seen that firsthand now. My girls are still here and they are, outwardly anyway, healthy and strong. There is a lot of uncertainty ahead, but uncertainty also means possibility. She will tell us what she needs and what she can do better than any doctor can.

I know I will feel much happier once they are out of the NICU. It’s a tremendously stressful and sad place, so it’s very hard to live in the moment when you are there. Getting them home is my major goal. To graduate, they need to be off breathing support, be stable health wise (including no apnea, bradycardia or oxygen dips), and be feeding orally. They’ve done part one. I can’t control when they achieve part two, but I see improvements every day. So now I’m doing my damnedest on the third part. I’ve never had to train a baby to eat before, let alone dealt with two who can only stay awake for a few minutes and who tire after just a few moments of nursing. But we are going to get it done, because I think the best thing for all of us will just be being together again.

Up and Down

Today was another day of highs and lows.  The biggest high was that I was able to try and nurse the two girls. Both have been taking soothers as they like them to associate sucking with their feeds.  C in particular has been showing signs of readiness to feed, as she pines for her soother just before her feeds.  Sure enough, she latched on right away and nursed for about 10 minutes – pretty good for a baby who wasn’t even supposed to be born for another month or more!   She did look mighty surprised at first, which was pretty cute.  B also tried, but we couldn’t quite get it.  I think it was because I was trying to tandem nurse and so I wasn’t able to position her very comfortably.  We’ll have another go tomorrow but I think I’ll just try one baby at a time.  Again, getting them feeding orally is one more big step toward getting them home.

The low was that C had her next head ultrasound bumped forward as her head is growing a bit faster than they would like right now.  We know that her injury will likely manifest later in some way, but since the last few ultrasounds indicated no real change, we were hoping things were stable with her right now.  She looks like the picture of health, so I just get to feeling happy and complacent and then something sets me right off again.

But another high is that they both remain off CPAP (aka breathing support), which is fabulous.