The Emma Report

While Emma has been nuzzling on Mom for the past few days, she hasn’t yet started breastfeeding. We’ve met with the lactation consultant but given Emma’s very preemie size, the team doesn’t expect her to be able to properly feed for a while yet (it often takes a long time for preemies to coordinate the “suck, swallow, and breathe” sequence necessary for non-gavage feeding). Emma has “played” and sucked a few times, but it is quite effortful for her and she usually falls asleep pretty quickly.

As it won’t be possible for Emma to be 100% breastfed while in hospital, she will receive some of her feeds by bottle. Today was the first day she tried bottle feeding.

As the photos show, she wasn’t sure what to make of it at first, but managed a few good swallows (followed by a very un-ladylike burp afterwards) and was able to take about 5 mls (it doesn’t sound like much, but it was quite an achievement for her!) before falling asleep. We’ll keep trying, and as she gets bigger/stronger, she’ll be able to take more each time.

Emma finally broke through the three pound barrier today and weighs in at 3 lbs, 1 oz (1364 grams). She has officially doubled her birthweight! She now measures just shy of 40 cm (15.5 inches) long and has grown almost 10 cm in the past 10 weeks.

Her nurse said today that Emma will likely remain in her isolette for at least a few more days. She’s had a couple of spells since her transfer to the Civic and her oxygen sats. have been all over the place. Until the staff at the SCN get to know her better, they’d prefer her to remain in the warm confines of her incubator (Emma is dressed only in a diaper in the isolette, so it is easier for the nurses to see her chest/count her respirations and monitor her skin tone/colouring). We’re able to hold her and take her out for her feeds (still through the NG tube) several times a day, but it will be nice when she is officially stable enough to give up the incubator for good.

Emma seems to be adjusting to her new home away from home at the SCN. Sometimes the stress of a big move can take a lot out of such a small preemie, so the team at the Civic is watching her carefully and “getting to know” her. She seemed a little quietier and less alert today than she has been, so maybe she’s just tuckered out. She’s back in an isolette (standard precaution after a transfer, to help maintain her temperature and to make sure she doesn’t have any “bugs” that could be shared with other babies), but will hopefully graduate to a regular cot again within a day or two.

The docs ordered a few tests today to check on Emma’s progress. An xray showed that her lungs were a bit “wet” again, so she’s been given medication to take care of some excess fluid. She may need to go back on Ventolin for a while (she hadn’t needed any since last weekend). She’ll also have another eye exam next week to monitor the ROP situation. Otherwise, the docs are a bit concerned about her slow weight gain (she’s still beneath the 10th percentile), so they may consider increasing the fortification of her feeds (it’s a fine balance as they can’t increase the volume too much because even just a bit more fluid tends to affect her breathing).

All in all Emma is doing well… if everything goes as planned, she should be able to come home in about 6 weeks. Keep your fingers crossed!

I was treated to a wonderful surprise when I arrived at the NICU today:

Emma had been moved out of her isolette and was in a regular cot. She was also all dressed up! For the very first time, she was wearing clothes — though they were waaayyy too big for her:) She was bundled up like the Michelin Man but she was able to maintain her temperature outside of the warm atmosphere of her incubator (a very good sign!)

The not-so-wonderful surprise was the news that she was going to be transferred from the NICU at the General to the Special Care Nursery at the Civic Hospital. We had been told several weeks ago that there was a possibility she’d be moved, but we were caught off-guard by the suddeness of the transfer (we found out just after noon today that she was to be transferred this afternoon). While we had hoped she’d be able to stay at the General until her discharge home (partly because it is much closer/more convenient for us, and because we’ve come to love the nurses at the General), the transfer is a positive sign of Emma’s progress (as she no longer requires the level of critical care provided by the NICU at the General and there were sicker babies who needed her space there).

So we’re feeling very mixed emotions today. We were very sad to leave the General, our “home away from home” for the past 10 weeks, and didn’t have a chance to say goodbye to all of the wonderful nurses there.* At the same time, we have to look at the bright side and know that Emma is no longer the very sick little girl she was 2 months ago in need of the critical care NICU.

This evening, Emma is sleeping comfortably in her new ‘home’ at the Civic. She’s one step closer to coming home!

* Wouldn’t you know it, my camera’s battery died and I wasn’t able to get any photos of Emma’s last day at the General…. Many thanks to nurse Paulette who snapped a few pictures for us:)

You know it’s been a good day when the most noteworthy event was a wet burp. While Emma still requires supplemental oxygen from time to time and has occasional spells, she’s doing well!

Emma achieved another milestone today… she’s officially given up CPAP!

She was able to go more than 24 hours without needing to be put back on the machine yesterday, so the nurses removed it from the room! She cruised along on room air for most of the day, but had a few big spells (in which she held her breath/stopped breathing and her heart rate dropped). While she easily came out of most of these dips on her own, she occasionally needed a bit of oxygen (though the nasal prongs) and at one point this morning she needed more vigorous stimulation (rubbing her back, arms, or legs) and “bagging” (given breaths with an oxygen-filled bag) to help her start breathing again. The nurses reassured us that this is “normal” behaviour for a micropreemie and that she will likely outgrow of these periods of apnea by 36 weeks (Emma is now 33 weeks, 4 days gestational age).

We were going to try actual nursing for the first time today, but the lactation consultant felt we should hold off on this for a bit given Emma’s breathing problems today… If she’s stable, we’ll try again tomorrow.

In spite of everything we’ve been through in the past 3 months, the loss of Emma’s twin sister, the emotional roller coaster that is the NICU, and the unknown challenges Emma may face in the future, we have a lot to be thankful for today.

We’re thankful for the outstanding team of docs and specialists at both the Children’s and General Hospital NICUs. They have undoubtedly saved our baby’s life.

We’re thankful for the many, many nurses who have so tenderly cared for Emma these past nine weeks. They have patiently answered our questions, helped us understand the myriad of complications she’s had, worried with us when she’s had setbacks, and cheered her progress as she’s improved. These wonderful men and women have shown Emma nothing but gentle, loving care when we’ve been unable to give that to her ourselves. We will be forever grateful to them. Their thoughtfulness is apparent in the little gift that was waiting for us when we arrived at the NICU today — yes, the turkey is made from Emma’s handprint

We’re thankful for our friends, family, and colleagues who have helped us in so many ways. To everyone who has sent their good wishes, prayers, cards, gifts, emails, meals, thoughts, and time, Thank You. You will never know how much your support has meant to us.

Most of all, we’re thankful for our two amazing girls:

Happy Thanksgiving everyone!

I just spoke with the NICU and Emma continues to do well. She was on room air for 18 hours yesterday, is on full feeds (25cc every 3 hours fortififed with an extra 24 calories) . She is only on CPAP at night (6 hours).

Wow, it’s hard to believe but, as the title says, this is post #100 to Emma’s blog. She’s had so many ups and downs in the past nine weeks since her birth… Hopefully the rest of her stay in the NICU will be much more uneventful!

Both yesterday and today, Emma was able to go 16 consecutive hours off both CPAP and nasal canula. As you can see from the recent photos, the nurses leave the nasal prongs on Emma during the day, even though she’s not receiving any oxygen through them. Partly, this is because they are taped to her bonnet in order to keep them in place. They’re then properly positioned so that Emma can get a “whiff” of oxygen if she needs it. The other reason is that Emma tends to desat when the prongs/tubes are removed entirely. So, as the nurse says, they simply don’t tell Emma what they’re doing , then they turn off the oxygen (when it’s clear that she doesn’t need any) and let her cruise along on room air. I guess in this case the old adage is true: what she doesn’t know, won’t hurt her

Emma has done so well on her feeds that the team was able to increase the amount of milk she was getting more quickly than first predicted and she is almost at “full feeds” (getting all the nutrients she requires solely from milk). Her IV line became occluded today, so rather than inserting another one (which brings a risk of infection), the docs decided she didn’t need one any more (as she will no longer need the TPN intravenous mixture of sugar, minerals, vitamins, fat and proteins).

So, for the first time in over two weeks, Emma is I.V. tube free!!