Day 81

One step closer to home!

Alice was transferred to Lions Gate Hospital this afternoon! What a great feeling this is for us.

We've had a great week - breast feeding each morning for the 9:00am feed - and the whole feed is by breast as well - no top up required. Alice's weight is 2653 - almost 6 pounds. She's doing really well. If she wasn't doing well, she would not have been released to Lions Gate.

The tough part now is the nurses and doctors at Lions Gate getting to know her and me relaxing and realizing that they will need a few days to get to figure out her quirks (her breathing dips really) and that she can recover on her own. I was just chatting with a friend on the phone about this and she reminded me that I've had 81 days to get to know Alice and the staff at Lions Gate are just getting to know her. So I must breathe, relax and not stress out (kind of hard not to though).

With Alice being so close to us now, I'll be able to go to the hospital 2 to 3 times per day (for one hour or so visits) and when she's strong enough be able to breast feed her these times as well (vs. once a day at Children's).

Nothing else to report at this time. Will let you know more over the next couple of days as Alice settles in (and we settle in as well with a new routine).

Day 78

Called the nurse at 9:00am Christmas morning to see how our week Alice was - and she was doing just fine (like the old Alice from earlier this week). Awake and hungry and ready to get the day started. What a relief! Made us feel so much better and we were able to relax and enjoy Christmas morning.

Had a quick visit with Alice yesterday afternoon. My sister (Sarah) was able to come (little break from her twins) and this was her first visit with Alice since October 20th or so. Alice is now the same size as Sarah & Bruce's girls when they were born on October 26th. Alice was alert yesterday at 3pm. Had a little boob sucking action, not as much as earlier in the week, but she was still interested.

And then the visit this morning was fabulous - Alice took her whole morning feed on the breast. Wow! She sucked for about 25 minutes - and at this time 15 to 20 minutes is a full feed so no top up was required. She was awake and alert when I arrived at the hospital and sucking away on her hand. During rounds with the doctor this morning, we decided we'd stay at Children's a couple more days and then look at transferring to Lion's Gate. We're getting there.

With all the commotion in our lives, I forgot to mention that we've had some friends (John and Marissa) who had a baby boy on December 22nd - Finn Gregory Lucas. He was a big boy - 9 pounds 2 ounces and 22 inches long. Like I said, I big boy. Congrats to them.

Day 76

Merry Christmas!

It's been a bit of a crazy week with our little Miss Alice. She has been doing really well with her breathing - in the fact that she's been breathing on her own (no machines) since Monday. Wow, what a huge step. It was so good that there was talk of moving her to Lion's Gate today (December 24th). So we got our hopes up and then when I went to the hospital this morning, she wasn't doing as well as she had been earlier in the week (even yesterday).

I've been going to the hospital around 9:00am and she's been wide away, almost like she's waiting for me. She's bright eyed and bushy tailed and sucking away on her soother. Today, she was sound asleep. So it seemed like something was up. Turns out throughout the night (mostly early this morning) Alice was having quite a few desats and even needed help on one of them to come out of it. So, no move today. I talked to the nurse at 3pm this afternoon and she was doing much better - no desats and Alice's energy seemed to be much better than this morning. So that's good. We'll see how her energy is tomorrow morning at 9:00am (I'll be calling the nurse as we'll opening presents with Max) and then head over tomorrow afternoon for the 3pm feed.

We did have some other success this week with the breast feeding - on Tuesday I pumped right before feeding her (so dry breast) and she was latching on and ready to suck, but there was nothing there. The fact that she got it was a good thing. So Wednesday morning I pumped at home then when it was time for her 9:00am feed, she latched on and sucked and this time, got some milk. Alice did really well. She did have a desat towards the end of the breast feeding, but that's okay. I think she fed for about 10 minutes. She's getting there! As Alice was so tired this morning, she had no interest in the breast (which also didn't make me feel good as this whole week she's been interested and hungry at 9:00am).

As I said above, we'll see how her energy levels are tomorrow and perhaps my Birthday next week will be a transfer to Lions Gate!

Wishing you all a very Merry Christmas! Love Scott, Pat, Max & Alice xoxoxo

Day 73

The last few days have been very interesting.

Friday was a great cuddle and Alice was off the breathing tubes for a few hours.

Cuddle on Saturday showed that she was tired as she kept having desats - not to the point of requiring oxygen to breathe again, but still needed some encouragement (blowing in the face and poking and tickling the belly) to get her to remember to breathe again. So Alice was put back on the breathing tubes after 2 1/2 hours. Max got the chance to Alice for the first time in weeks. He was happy to see her, and after about 5 minutes, it was time for hot chocolate with whip cream. Max has his priorities!

So Daddy got to cuddle with his daughter this morning ...

while Max and I explored the hospital.

Cuddle on Sunday was great and the nurse kept her off the breathing tubes for 5 hours. She was only supposed to be off for 4 hours, but was sleeping so soundly at 1:15pm, he didn't want to disturb Alice so didn't put her back on the breathing tubes until she stirred around 2:15pm. Good day!

With the long stretch on Sunday it was going to be an interesting guess as to what would happen on Monday. Well - we cuddled for 2 1/2 hours (me for 2 hours and Granny - my mom - for her first cuddle with Alice was 1/2 hour). Then back in the crib with no tubes. It was decided by the doctors to leave it up to Alice as to how long she would stay off the tubes. When I called the hospital at 4:30pm, she was still going strong with no breathing tubes. YAY ALICE!

The doctor asked if we'd like to try and get her to Lion's Gate before Christmas but my first response was NO. Too stressful with Christmas at the end of the week and then if something went wrong she'd have to go back to Children's. Better to leave her a few extra days at Children's, get through Christmas, and then have her move to Lion's Gate next week.

Also, as she's doing so well with the breathing, we're going to try a little breast feeding tomorrow morning as well. See how she gets along with the boob.

Day 70

Quick update - Alice is doing about the same as she was at the beginning of the week. She's not strong enough yet to go off the CPAP to low flow or high flow. She was off the CPAP for 4 hours yesterday (Thursday) before being put back on. This morning she was off for 2 hours (couple of dips - one big one that she needed some Oxygen to wake her up), and then she was going to stay off for one, maybe 2 more hours (depending on how she did in the 3rd hour).

Alice is gaining weight very nicely - she's at 2335 grams today (so just over 5 pounds).

I forgot to mention that she had her second eye test earlier this week (Tuesday I think) and her eyes look perfect. So another plus for us!

Another huge plus, the hospital has lifted the H1N1 ban on guests and siblings - so Max is going to come to the hospital tomorrow morning to see Alice. Last time he saw her was end of October so he's going to see a HUGE change in her. It will be nice for Max to see Alice as he was asking the other day when he could see her. And this time she won't be in an incubator with tubes and wires coming from her body. She'll look like a real baby. Hopefully he'll allow us to take a photo!

Day 67

Well, we're going backwards a little now.

Alice was off the CPAP from 9:00am to 3:00pm on Sunday. At 3pm she was put on the low flow until 3:00am. She was having too many dips so was put back on the CPAP. It was just too soon for her to be off the CPAP full-time, which also meant that the low flow full-time wouldn't be a smart move either.

So on Monday it was decided she could be off the CPAP for cuddles and then back on. We got our hopes up on Sunday that she would be moving forward and she still needs to get her breathing finessed before moving forward. Kind of disappointing.

Today we got some written orders as to what the plans are. Alice will be off the CPAP for 3 hours in the morning and 1 hour on night shift. She'll stay on the CPAP until Monday, December 21st and then we'll evaluate her status. Perhaps over the next week thought (if she does well) they will extend her 3 hours to 4, then 5 and see how she does.

Besides the breathing, she is doing really well. Her weight is around 2200 grams (almost 5 pounds). Her age now is 35 weeks plus one day. So she's doing well. Because of her size she will no longer fit any "preemie" clothes. We are dressing her in clothes the hospital provides - less laundry for us to have to do at home, and she's swaddled in a receiving blanket so no-one sees what she's wearing anyway.

Scott had a great cuddle with her this morning, and luckily she was wearing a diaper as she had a HUGE poo-nami!

Day 65

It's hard on the weekends to find the time between Alice visits and Max time, and then there's the social time too, to update the blog. Here's the update for the last few days (all photos were taken today - Sunday):

Friday - great cuddle with no tubes. Better cuddle than Thursday, meaning less dips and she's getting better about breathing while pushing out the toots. The docs are okay with a 2 hour cuddle in the morning as she's doing so well. Alice was starting to route around for food from me and was sucking on my upper chest. These are great signs that she's hungry and wanting to have some breast milk as well.

Saturday - an even better cuddle. Alice had a bath on Friday night with no tubes and she did really well and enjoyed the bath as well. So that's a good sign on how well she is doing without the breathing tubes full-time. There was talk in the cuddle today that Alice may go full steam ahead (after the weekend) with no breathing tubes at all. We'll see. I'm getting the the hospital for the 9:00am feed so that she is in my arms while being fed and she's got the soother in her mouth. Again, started to route around for some food before the food came. Only one dip and she recovered on her own. There is light at the end of the tunnel!

Sunday (today) - and even better cuddle. One big dip (like yesterday) and she recovered on her own. Started doing some routing around before the food came and started filling her tummy. We had a 2 hour cuddle and didn't read in the doctor notes that we could have actually cuddled for 3 hours with no breathing tubes. Was there for rounds and the doctor today decided that she's doing so well we would take away the breathing tubes (CPAP) and see how she does. Called the hospital around 5:00ish to see how she was doing - nurse said she was put on a low flow nasal tube which helps here a teeny bit, but not nearly as much as the CPAP. If she can get along with the low flow or nothing at all, then the move to Lions Gate Hospital will happen fairly soon. Now that Alice is no longer on the CPAP, we can try and start breast feeding (in small stages).

Big Yawn!

Day 62

It's been a few days of cuddles without any breathing tubes attached to Alice.

Tuesday was the first - we were to cuddle for an hour. After 22 minutes she had a big dip and required some oxygen to get her going and then she was fine (with little dips but recovering on her own) until we reached the hour time and then put her back in her crib. On rounds, the doctor requested she have 2 x 1 hour times per day of breathing on her own. So a second time took place with the nurses and she did well then too.

Wednesday - we again were to cuddle for an hour. Alice lasted about 15 minutes this time before requiring oxygen to get her going again. And then about 10 minutes or so later had another big dip. Once she recovered from this dip she had a toot and poop. So we figured she was holding her breath and pushing the toot and poop out, which made her have a big dip. Once she pushed everything out, the rest of the cuddle was relaxing.

Thursday - we cuddled for almost 2 hours with no tubes. 25 minutes was the first big dip (requiring help) and then before the first hour was up, another poop and toot (which made her require oxygen). Once she got this out she was good until 1 hour and 45 minutes. We (the nurses and I) figure she holds her breath to push the toots out. Now that she has done this two days in a row, we definately think that's what it's all about.

She's on the right path to breathing on her own. Once she can breath on her own then she'll get transferred to Lions Gate Hospital (a 3 minute drive rather than 40 minute drive). Hopefully this will happen by the end of December. It could even be by Christmas, but we're not getting our hopes up for this timing. If it is Christmas, that will be a nice present from Santa!

Day 59

Sunday (Day 58) was spent in the morning at Breakfast with Santa. Max was so keen to sit on Santa's lap and tell him who he was and what he wanted for breakfast it was fantastic, especially in comparison to last year when Max wanted nothing to do with Santa at all.

Today at the hospital, I had a cuddle with Alice and so did Scott. She is doing really well. Her weight is now 2030 grams (4.5 pounds).

Her feeds have been switched from the gravity feeds to feeding her over 30 minutes. She was dipping in her breathing with the gravity feeds.

She was moved back into a crib today as well (after cuddles). Hopefully she'll last in it longer than last time.

For tomorrow's cuddle, the nurse is going to remove all breathing tubes. So it will be Alice breathing all on her own. This is a HUGE step. Hopefully it goes well and she lasts a while - even if she doesn't last the whole cuddle, it will still be an exciting time.

Day 58

Didn't see Alice today. She was doing well on Friday and Saturday and today when I talked to the nurse midday. Going to hospital tomorrow with Scott. Will post an update after Monday's visit.

Day 55

Alice is doing so well (right now) it puts a smile on our faces!

She is gaining weight each day - today her weight was 1865 grams. This is a true weight as she is naked with no breathing tubes adding to her weight. She is being fed 34cc's of milk every 3 hours and digesting it well (no acid reflux).

Alice has moved one step forward in her breathing. She's still on the same machine, but the machine is doing less for her. I believe she was on SiPAP before and now on CPAP. And she's breathing at room air still with very few dips in her breathing. When she does dip, she isn't requiring assistance to start breathing again. The next step would be to breathe with no machines. Depending on the doctor, either they'll go full steam ahead or let her try for a couple of hours at a time and see how she does.

She did get moved back into an incubator as her body temperature wasn't staying warm enough. No point in using her energy to stay warm when we need her energy to keep her breathing.

Alice had her eyes tested yesterday and all looks good there too. The eyes are "immature" but that's normal for a premie. She will get her eyes tested again in 2 weeks.

During our cuddle this morning, I had a soother in her mouth and she sucked on it for almost 1/2 hour. Which was really great! She won't be able to start breast feeding until she is breathing on her own, but she can practice sucking on a soother.

The doctor's a really happy with her progress. She'll probably get moved into one of the back rooms in the next couple of days (most likely when they need the space up front for a newer baby with more needs).

Day 53

It's so great walking into the NICU and seeing Alice in a crib. She's becoming a really big girl (well big in relation to where she used to be). It's a bit strange seeing these other little babies and thinking back 7 weeks to when Alice was one of the little babies. There's a teeny tiny one in the NICU right now that weighs about 500 grams. The strange thing is, this baby was born at 28 weeks. Normally 500 gram babies are around 24 weeks. I don't know anymore to the story than that.

Alice has gained more weight, so she now weighs 1835 grams. She is being fed 34cc's of food every 2 hours. She is breathing room air, so 21% oxygen.

The other cool thing is she's now in clothes. A onsie, sleeper, swaddled in a receiving blanket and then another blanket on top to finish things off so she doesn't get cold.

We had a great skin to skin cuddle today for 1 1/2 hours. She falls into a deep, deep sleep and then when it's time for her to go back to her crib, she's wide awake. So then it's time for talking and staring into her big eyes.

She's climbing the ladder right now, and hopefully she keeps climbing to the top without too many back steps now.