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.

Day 51

We had a very exciting day today! Alice now weighs 1800 grams and will be 33 weeks old tomorrow (Monday). So with the weight gain, her age and her incubator temperature has reduced to room air, Alice gets to move to a crib! Woo hoo!

Here's a hand size comparison to Scott's fingers. Much bigger than 7 weeks ago!

Peeking through the crib. And now that she's in the open, she will have the opportunity to wear some real clothes (that, of course, will be hidden by her blankets). But still, no longer just a diaper!

Close-up peek! This will be the last time (for a while) that we'll be able to see her full face as Alice is to be extubated tomorrow.

Wide shot to see the crib. It's not a recall crib (ha! ha!) and it's a smaller version of a "home crib" so that it fits the babies only. Not one to grow into.

Day 50

It's been a couple of missed days. Meant to write something yesterday but ran out of time.

It turns out the doctor's don't think she had NEC because she recovered so quickly that they were able to stop the antibiotics after 5 days. I guess with NEC she wouldn't have been showing signs of feeling better so soon. Alice had another x-ray yesterday to check her belly and all was looking good. With her huge weight gain earlier this week, thinks have leveled off as she had a loss the other night and then a smaller gain last night. So her weight is currently at 1780 grams (almost 4 pounds).

We had cuddles yesterday and today. She was way more alert both of these days, and about 5 minutes into the cuddle she fell into a deep, deep sleep. Which is what they are supposed to do. So that's a good sign. She started on the breast milk yesterday at 5ml every 2 hours. The feeds are being increased every other feed by 2ml until she gets up to 33ml. Once she hits 33ml per feed, then the IV will be removed.

On Monday Alice will be extubated (again). Back to the hat on the head and the mask over the nose to assist with her breathing. It's tough not seeing her face when she's on the CPAP, but it help her breathing. It was very nice to be able to see her the last week (even though she was intubated).

Alice had her 6 week head ultrasound and all is looking good there. The grade 2 bleed she had on the previous ultrasounds seems to have cleared itself up. There's a bit of fluid on her brain, but it's insignificant, so nothing to worry about (at this time at least). And her x-ray's from earlier this week also show her lungs look good as well.

Not too much else I can think of right now. I have heard that there are some peeps that would like to post some comments, but don't want to set up another email account (totally understand). I've set up a gmail account that you can use, please make sure to say who you are as the post will look like Alice sent it to herself.

email: alicemlink@gmail.com

password: linkmalice

Day 47

Finally remembered to bring the camera today and take some pictures. Alice is looking like a real baby now. For two weeks while she was on the other breathing machine, we didn't get to see her full head or face. The one positive about intubation is we get to see her. And she looks different and more like a baby after two weeks.

Alice was doing better today than the last couple of days. I forgot to mention she was on morphine for the pain, but that was stopped today. So she was much more alert with me this morning. The plan is to continue the antibiotics for the 5-days and then take her off (which I think is Friday, but not 100% sure).

She had a huge weight gain last night (130 grams), but I'm not sure how accurate that is as it's so big. So tomorrow's weight in will be more realistic. Perhaps the scale was off, not sure. But with this weight gain, Alice is now weighing 1765 grams (just under 4 pounds). She's getting close to doubling her birth weight. I was also chatting with a friend today who is due in January (January 18th - same day Alice was to be born) and the weight of the baby in-utero is to be 4 pounds right now. So Alice is right on schedule.

This picture above is through the plastic of the incubator so it's not the best quality, but you can see her whole body and how much bigger she is from the last set of photos.

Just waiting for her to be stable enough for cuddles again! The week isn't as hard as we thought it would be as she's doing really well. She was pretty much at 21% oxygen (room air) all day today, so that's really good.

Day 46

Well, Alice was much better this morning than yesterday, and even better this afternoon (went for two visits today).

This morning when Scott and I got to the hospital she was more alert than yesterday, especially when she heard our voices. The nurse was able to drop her Oxygen levels from 33% down to 21% (room air). So she did very well. Her tummy was measuring 28cm around - which was still quite bloated. But her tummy was soft which meant the antibiotics were working. We chatted with the doctor and it was decided she would remain on the antibiotics for 5 days (rather than the regular 7 days) but in 5 days if it was required, she would stay on for 2 more. We didn't stay too long as she needs to rest.

This afternoon mom and I went and she was sleepier than this morning. But her tummy size had reduced by 2cm, and now measured 26cm. After changing her diaper and cleaning out her intubation tubes Alice decided she was going to stop breathing so the nurses had to bag her - not sure what the medical term is but it means they manually have to pump air into her lungs to get her to breathe again. She did this two times in less than 5 minutes. Once she was breathing after the second time, it was time for her to rest and us to go home. This sounds like a worry, but in fact it's not. She's done this before (this was the first time on this shift). Because she's hooked up to the machines, the nurses are able to catch it and help her to breathe. So it's not a worry.

Once she becomes more stable then we'll be able to cuddle again.

Day 45

Today's visit was not as positive as we were hoping it would be. Our little miss Alice has taken a couple of steps backwards.

On the positive side, her blood tests are all good - hemoglobin levels are good and so are her platelets.

The bad side is she has what they think is Necrotizing Enterocolities (NEC for short) - an inflammation of the bowel caused by an infection and poor blood flow. The reasons babies get NEC are not completely understood. The more premature the baby, the greater the risk. NEC is confirmed by an x-ray of the abdomen. Antibiotics are needed. The baby receives nothing by mouth for several days to give the bowel time to rest and heal.

Alice had an x-ray this morning as her tummy looked distended and there was quite a bit of air as well. She also has a green fluid that is coming up from her tummy as well. Her antibiotics that were started on Saturday have now been changed to the corrected ones for NEC. She is also on morphine as when she is being handled by the doctors, she appears to be in pain.

There was no cuddle today as she was a tired little girl and needs to have as much rest as possible. The plan is to have another x-ray tonight around 8pm. Results in around 10pm. Scott and I are going tomorrow to see how she is doing. Chances are no cuddles for the next few days until it's figured out what is wrong. If it is her tummy, she's probably in pain and doesn't want a cuddle anyway.

This is going to be a tough week.

Day 43 & 44

Day 43

When I got to the hospital yesterday morning, I was informed that Alice had not been behaving so far. She was dipping a lot in her breathing and just not doing too well. I informed the doctor and nurses that she was seeming quite tired to me and not herself. So with this information (as the parents are the ones that see the babes everyday and know when they are and aren't themselves, it's really the parents that look out for the babes and not the nurses as much as they are always changing), they decided she needed to have tests done.

Some blood was taken to check her gas levels, her hemoglobin levels as well as for a blood culture (to check for infections). It turns out her hemoglobin levels were low so it was decided she would get a blood transfusion (her third one) on Saturday afternoon. In the meantime, antibiotics were started in case there was an infection. It takes 48 hours to get diagnosis as to whether there is an infection, but may as well start the antibiotics and stop them at 48 hours if there is not infection.

We've had a really good couple of weeks with no backwards steps, so this isn't really uncommon that we should be moving backwards. Her breathing is okay and her weight gain is great (she was at 1450 grams), now it's the energy level to keep the breathing going.

Day 44

No visit today, but phoned to check in on how Alice was doing. She got moved back to the larger NICU area as there are more people around so more eyes to watch out for her. She was having some more dips. It's hard to really understand over the phone where she is at, so I'll find out more tomorrow.

There's been no word of infection so that's good news and her oxygen levels have been around 21-23% (close to room levels) so she's doing well there.

Today would have been a good rest day and hopefully she'll be up for a cuddle tomorrow.

Day 41

Wow - almost 6 weeks old! Hard to believe.

I made a big boo boo and forgot to write on yesterday's posting that Scott had his first cuddle with Alice. They had a nice long cuddle. Scott held her in his arms in a way that he could see her face (and she could see his). Near the end of their cuddle she finally decided to open her eyes and check out her daddy.

We had a very nice cuddle today for almost 2 hours. Alice had a great weight gain last night so now she's 1450 grams. Getting closer and closer to 4 pounds (1800 grams).

I learned more about the breathing machine she's on today as well - it assists her with 20 breaths per minute and the oxygen levels (today) were around 23 to 25. Room oxygen is 21. So she's almost at room oxygen levels. The assistance in the breaths is to prevent her lungs from completely closing so she doesn't have to use the energy to open up her lungs.

The next breathing machine she will move to will not have the assistance with the breaths - so she will need to open up her lungs herself.

Had some other questions - what hospital is Alice at? she's at Children's and Women's Hospital in Vancouver (used to be called Grace Hospital); what was her original due date? January 18th.

Day 39

Alice has surpassed the 1400 gram mark (by one gram). She's really putting on the weight now, and quite consistently. She now needs to figure out the breathing - which will come in time. She's been bratty lately and forgetting how to breathe. Sunday was a bad day, but she's been doing better since. The docs had an x-ray done of her chest today to see how her lungs are fairing - and they are doing well - which means we don't need to be taking any backwards steps at this time.

Someone asked me today how Alice gets an x-ray. She stays in her incubator and lies on her back. Thee x-ray plate (I'm not sure what it's called) is put on top of her incubator and a portable x-ray machine is wheeled up beside her incubator and an arm reaches over the incubator on top of the "plate" and a button is pushed on the x-ray machine and the picture is taken. All of the files are then digitized so the doctor's can view the files from any computer in the hospital.

Another question from the other day was where is her feeding tube - and the feeding tube goes directly into her mouth right into her tummy. If she was still extubated, the feeding tube would be in her nose going to her tummy.

Third question was about skin to skin cuddles (for those who watch Grey's Anatomy) and yes, we do skin to skin cuddles. The hospital really recommends it as the babies can hear the heart beat, get to know your smell, their body heat and your body heat become in sync and they get into a deep sleep while cuddling. The recommended time for a cuddle is at least one hour so that the babies have one full sleep cycles while cuddling.

She is continuing with her continuous feeds (eating all the time) and this seems to be helping with everything so she only has to concentrate on breathing.

At this time, there's not too much to report on.

Day 36

Very quick post today - our little Miss Alice was at 1359 grams yesterday and 1360 grams today - she gained a whopping 1 gram over night. That's got to be a very, very accurate scale!

She has also moved rooms - which means she's graduated. She's still in the NICU but in a room where the babes do not need as much attention as they have required previously. There are three goals right now (if we can keep moving forward and not backwards):

1. reduce the 02 assistance on her breathing assistant

2. reduce the temperature of the incubator so that she can be in room air in clothing

3. increase her weight so she can move into a crib

With this room graduation, it means she's getting closer to being able to transfer to Lions Gate Hospital. Which won't be any time soon, but it's at least a move in the right direction.

Day 34

It's hard to believe it's almost been 5 weeks since Alice decided to pop into this world unexpectedly. Has the time gone by fast? Yes and no. As I was holding her today I realized how much she has grown over the last 5 weeks. She's almost at 3 pounds (and was a mere 2 pounds when she was born); she is 37.5 cm long (grown 3.4 cm since birth); and looks more like a baby each day. She no longer fits into the crook of my chest like she used to. There's actually some weight there when the nurse hands her to me. She's also one of the senior members of the room in the NICU that she is in. I can't remember if I said before, but there are are 12 beds in Alice's room. Some of the babes have graduated to a different room where they are no longer attached to machines and some of moved to other hospitals closer to their homes (the hospital move may not be a 'graduation' but just a closer commute for mom and dad).

Alice is hanging strong with her breathing. This is day 3 and she isn't tired like she has been previously. Her feeds have changed as well - to give her time to work on her breathing, the feeds are now continuously pumped into her stomach. This is a step backwards, but if we can move forward on the breathing and then worry about the feeds, that is a good thing. She is consuming 17cc's every 2 hours - so almost 200 in a 24 hour time period.

Here's a couple of pictures from today of Alice in her incubator (or as I call it her 'home').

And here's a picture of her incubator - something I realized I had never included on any previous posts. This gives you a sense of what her 'home' looks like. The yellow material you see draped over half of the incubator covers the entire incubator when she is not being attended to by the nurses, doctors and me. The cover helps block the light and sound. The incubator is heated and as the babies grow, the heat is decreased to a point where an incubator is no longer required and the babes can be in clothes (onesie and a sleeper) and in a crib.

The monitor (computer screen) to the right is what tracks all her vitals - heart rate, respiration, 02 levels.

If anyone ever has any questions, please don't hesitate to post a response on the blog or send me an email (cooper_prod@telus.net), I'm more than happy to share any information about our experience.

Day 33

Quick update from yesterday's visit - Alice is doing well since she's been extubated. She's now on a machine that still assists her with her breathing, but doesn't do as much work as being intubated. She's had a couple of crashes (one on Tuesday, one on Wednesday) where she's needed the nurse to assist her back to breathing. But all the other little crashes she's recovered her self.

Her weight yesterday was 1289 grams. 1362 is 3 pounds - so she's getting very close!!! I would say she's looking more like a baby now. Her face has filled out, here hands have grown into her fingers and her body looks more baby like to.

Funny story - I was changing her diaper yesterday (which I've done before), and as I was taking off the old one to put on the new one I lifted her legs (like you would to get the new diaper under the bum) and she squirted a poo-nami all over the inside of her incubator. On the wall, all over her bedding, all over my hand and on some of her wires as well. It just shot out! I guess there was air in her tummy and this help to projectile the poop! It was quite funny. The amount was probably about 1 tablespoon but from a little bum in an enclosed area, it seemed like a lot more.

I promise to take pictures today to give you all a perspective of what the NICU is about (the room Alice is in and her incubator too).

Day 31

Had another good cuddle today before Alice was extubated. This was going to happen around 3:30 this afternoon. I called the hospital around 5:30ish to see how she was doing, and her nurse said she was doing great. She was breathing with 24% O2 help (which is about the level she was requiring when she was intubated). Hopefully this is the third time lucky, and she'll not need to go back to intubation.

Her weight is going up - around 1260 grams today. Not sure if this will continue to increase with the breathing change as this breathing will require more work from Alice which means more calories will be burned up. We'll see.

Day 30

Again - time for catch up.

When Scott and I went to see Alice on Thursday (after I posted the last blog) she had an IV in her arm (new to us). Reason for the IV was preventative medicine in case she had a bit of an infection in her lungs from acid reflux. Which again, is quite common with these little babies. Some of her milk that she spit up ended up her her breathing tube which causes the acid reflux and therefore an infection. There's no guarantee that there is an infection, but preventative medicine is the best.

As Friday and Saturday progressed, our little Alice seemed to get more tired and not as eye opening as she had been in the previous week - which means she probably did have an infection and the blood tests hadn't shown this yet. Her body language speaks huge and seeing her everyday you really get to know her personality.

Today was a great day because she was back to her chipper self - eyes wide open when she heard my voice. Eyes wide open at the beginning of the cuddle as well. Then sound, sound asleep (deep sleep) and no machines bonging while she slept. So she most likely had an infection and the antibiotics zapped it.

On rounds this morning "they" are still talking about extubating Alice tomorrow. She's getting some caffeine hits today to see how she reacts to these (as once she's extubating she'll be getting caffeine hits more regularly). We'll see how she goes through the night, and perhaps when I arrive tomorrow afternoon, she will have been extubated!

I will take a picture this week (once she's extubated) so you can see what the tubing looks like. The very, very first picture on the blog has the biphasic tubing, but I'll get a more recent shot.

Day 27

I've missed a few days. Here's the catch up.

Alice had another blood transfusion (her second) on Tuesday (Day 25). Her red blood cell count was low and at this age they don't make a lot of red blood cells (which are the cells that carry the oxygen). So her assisted oxygen levels have needed to be increased. The thought was, if she was given a transfusion then her oxygen levels would decrease. Even though the amount of blood she receives is very little, it still takes 3 hours for the blood to go from vile into her body. So no cuddle on Tuesday.

Her weight as of yesterday (Day 24) has increased to 1125 grams (somewhere around there). Alice keeps increasing her weight, which is a really good thing because then everything else, like her red blood cell count and breathing, will start to improve as her weight goes up.

Alice is still intubated and the plan right now is to remove the tube on Monday and have her back to the biphasic machine to assist with her breathing. I don't think I've explained what this machine does - it's the tube that goes right over her nose and gives her little blasts of air to keep her lungs open and remembering to breath. Think of it as though someone were blowing in your face every few seconds - you'd remember to breathe then.

Sister Sarah, Brother-in-law Bruce and their two little babies (Jules and Ava) went home on Saturday and are all doing really well. Sarah is double fisting the feeds every three hours. Bruce is at home this week and next, then back to work. The Halliday clan is doing really well!

We also had two other friends have babies this week - Rachel Brock and her husband Peter Clearwater had a baby boy (Declan - not sure if the spelling is correct) on Monday, November 2nd. They are doing well and spent one night in the hospital.

Our other friends, Colleen Hutton and her husband Bernie Kuhn and a baby boy (Max) on Sunday, November 1st. Max came a bit earlier than expected (33.5 weeks) and has spent some time with Alice in the NICU. Hopefully he'll be moved to Lions Gate where he'll be closer to his home. All in all, they are doing well too.

Scotty and I are heading to visit Alice very shortly and I'll send an update soon.

We just received word that there's a grade 7 class at Brooksbank is keeping up with Alice's blog - so we wanted to say hi and thanks for reading and asking about her. It means a lot to us!

Day 24

She doesn't look very tiny in this picture, but if you look at the one below, you can see how small she is in comparison to me.

She had her eyes wide open for a quite a bit of the visit today. Her O2 levels are doing much better as well. The fact that she can work on growing right now rather than breathing will really help when it's time to remove the ventilator and get her to try breathing on her own again.

She's up to 14cc's every 2 hours. This won't increase until she gains more weight. Alice gained 7 grams last night. Not too much, but better than a decrease.

She's doing very well and it makes us happy that she's getting stronger each day (for right now at least).

Day 23

Now that Alice has been intubated she seems to be doing much better. On Thursday night after she was intubated, the docs also ran a bunch of tests on her to confirm that she was tired due to the breathing and not an infections. So they take blood and fluid from her spine to check for infections and meningitis (with the spine fluid). Everything came back negative on Saturday morning. Which means that she was tired earlier this week because of the breathing.

So her IV was removed and now the only machine she's hooked up to is the ventilator. Well, she's also hooked up to another machine for Heart Rate, Respiration and O2 levels, but those are standard machines.

Her O2 levels were fairly consistent yesterday - requiring around 23% assistance. Today the nurse said they were more up and down - ranging from 23% to 29%. Nothing out of the ordinary.

We finally got cuddles today (after 3 days without) so that was very nice. She's also gaining weight - 29 grams last night which now takes her weight to 1080 grams. She's continuing to digest the breast milk and had 2 poops today to prove it!

I will try and remember to take a picture tomorrow and post tomorrow night - she is starting to look more baby like and not so much like Shmigol from Lord of the Rings.

Thanks to everyone for their posts and thoughts. It's really nice to have the support and know that there are so many people out there sending their love to us and to Alice as well. Hugs and kisses to you all.

Day 20

Sister Sarah and Brother-in-law Bruce had their babies on Monday, October 26th (for those who don't know). They had twin girls and Sarah carried them almost to 40 weeks. She had a c-section on Monday. The girls are doing well. Here are the stats:

Avery Marguerite & Juliana Rose Halliday

Avery @ 5lbs 11oz (2570 grams) & 47cm

Juliana @ 5lbs 8oz (2504 grams) & 48cm

Avery is hanging out with Sarah and Bruce while Juliana is hanging in the NICU at Lion's Gate to get her blood sugar levels on the rise. They should all be heading home sometime this weekend.

Our wee Alice is getting intubated today (that's a good thing). We finally had a repeat nurse (Dolly, who is amazing) and she fought for getting Alice intubated as Dolly felt she was looking tired. To give some background, so far everyday we've gone to the hospital, Alice has had a different nurse on the day shift. There's been the odd time where the same nurse has stayed for two days, but that's only happened in 2 cases. The drag about a new nurse everyday is they don't get to know Alice (or any baby), so when a doctor asks what are they normally like, the nurse can't give an accurate answer.

So thanks to Tara Loutit (who worked in the NICU for years and years and is now working on her masters while at home with a 2 1/2 year old and a 4 month old - go Tara!) told us that we have to be our own advocate and look out for Alice. Well, it's taken almost 3 weeks for us to feel confident in doing this. Some of the nurses will be "primary care givers" for the babies if you ask them - which means they will get assigned to your baby on their shift. So I talked to Dolly today to see if she would be interested - and she said YES! And she's going to help find some other nurses who would also be interested in working with Alice as well.

So with Dolly pushing for the intubation and me agreeing to it, the doctor signed off on it. The intubation isn't always a good thing as it can lead to infection, possible lung problems and possible brain problems as well. But our wee Alice was getting so tired that she needs help breathing so she can get stronger. And since she was the one who pulled out her tubes a few days ago, she would have remained intubated had this not happened. So now she can work on her growing bigger and stronger and then the breathing.

Speaking of growing big and strong - she gained 51 grams last night - so her weight is now 1010 grams. She is now 1 kilo. For today that is. She may go down tonight because of the intubation, but she's growing and enjoying her food.

No cuddles today because she was so tired, but tomorrow we will have some good cuddles!

Day 18

Here's a photo from Day 15.

As of today Alice is doing well. Her weight goes up and down. It went down last night (but it went up the night before). She is still over her birth weight - so that's a good sign.

She's doing well with her breathing but I wouldn't be surprised if she has to be intubated again in the next few days - her lungs are "wet" and she seems to be getting a bit more tired. But we'll see. Everything else is holding steady.

We had cuddles today!

Day 14, 15 & 16

Day 14

Alice was doing just as well on Friday as she was on Thursday. Her weight levels had increased - getting closer to her birth weight. And her food is still continuing to increase 1cc every 12 hours.

She knows when I arrive now - which is so special - as she opens her eyes to my voice. It's very sweet! And it was great to have another cuddle as well.

Day 15

While Scott and Max went to Sportball, I was having cuddle time with Alice. Again, her food increased by another 1cc in the 12 hours. Her eyes opened when she heard my voice and her weight has increased to surpass her birth weight! She's on a good road right now. The beginning of the week was tough, but the middle and end of this week have now made up for Monday and Tuesday. She had her 10-14 day brain ultrasound and we are awaiting the results from it.

Day 16

Quick visit today with Max and Scott as we had to get to the pumpkin patch to get our Halloween pumpkins. Very important!

Sometime from when I left the hospital yesterday to when we arrived this morning Alice was extubated - meaning the tube going right to her lungs to help her breathe has been removed and she's back to have the assisted breathing over her nose (just like some of the first pictures where you see her wearing the hat and the tube to her her nose). I'll get more information from the doctor's tomorrow - but this again is a step forward. There is no guarantee that she will stay this way - she may require intubation again. We'll just see how long she lasts and whether she starts to get too tired again.

Results from her brain ultrasound were positive - nothing additional to what was reported after her initial brain scan - still the grade 2 bleed - but again, that's normal and we don't need to worry about it. I believe her next brain scan is at 6 weeks.

Alice's weight is now at 906 grams - which is over her birth weight (not by much) but she increases and decreases each day. The increases (so far) have outweighed the decreases.

We picked out a pumpkin for Max and for Alice.

Day 13

We had a great day today!

Results from cardiology say that her valve is open a wee bit and it will close on it's own so there is nothing that needs to be done to manually close it. YAY!

Results from her infection say it's staphylococcus and that's what they thought, so the antibiotics that Alice is on will zap the infection. YAY!

Her food intake is currently 6cc's (6ml) every 2 hours and this is now going to be increased 1cc every 12 hours rather than every 24 hours. She's peeing and pooping, which means she's digesting the food. Again YAY!

And we got to have a cuddle today as well - which was so nice! This little girl is a fighter. Today was a good day.

Day 12

Day 12

The transfusion sure gave our little girl some energy. She was not nearly as tired as the last couple of days - she was wiggling, squirming and stretching a fair bit today. It sure was nice to see her moving.

And it turns out she does have an infection of some sort. So they (it's so funny to write "they" because who are "they" - "they" are the doctors and nurses in the NICU) have given her some antibiotics to fight the infection. At the same time Alice is on the antibiotics another group of "they" take the infection and put it in different petri dishes and use different antibiotics to see which one fights the infection - and then "they" will change Alice's antibiotics (if she's on the wrong ones) to fight the infection within her.

At the same time all this was happening today, a resident cardiologist came to check out a murmur another doctor had heard in her heart. The murmur could possibly be a PDA (patent ductus arteriosus). In regular people terms here's the explanation - when a baby is in-utero there is a valve in the heart that is open and it prevents the blood from entering the lungs. When a full term baby is born, the valve knows it's time to close. When a premature baby is born, the valve doesn't always close. It has an argument with itself on whether it should close or not. An ECG was done today to check on whether Alice's valve had closed or not. If it hasn't closed, there are different solutions (which we don't know yet) on how to get the valve to close. An open valve affects the breathing. We'll find out tomorrow what the next step is, or if there even is a need for a next step regarding her valve.

As she was so busy today being poked by the cardiologist and the tech for the ECG we didn't have any cuddles. But tomorrow we will for sure! All of what is being posted is "normal" for a premie - when we are told to worry, we'll let you all know it's time to worry as well.

DAY 10 & 11

The last couple of days have been tough on our little miss Alice. She's having problems breathing so an x-ray was done and she has what is called 'wet lungs' - meaning that she needs help to breath. She is still intubated and they are having to figure out her CO2 levels as they are quite high - in the high 60's or low 70's and they should be between 40 and 60. So the RT (Respiratory Therapist) plays with the levels of stuff (I don't know what) to try and get her CO2 levels lower.

There were a couple times yesterday morning where she just stopped breathing so they had to 'bag her' (just like you see on the hospital shows where they put the bag over the mouth and manually pump air to fill the lungs). All of this stuff is fairly normal for premies, so don't worry.

Her weight continues to go up and down. She was down to 794 grams yesterday but gained 6 grams overnight. So is now at 800 grams.

Today she seemed much more sleepy than she has on previous days - even more so than yesterday. So it's time to figure out what is wrong. Some tests are being done tonight to see if she has an infection of some kind (doctor phoned to say she did very well when they took all what they needed from her for the tests). They are also going to give her a blood transfusion as she is showing signs of anemia in her blood count. A blood transfusion usually happens in the first week and the fact Alice has made it to Day 11 without one is great. This is also very common for premies. Some premies will only have one transfusion and some will require more. If you're wondering the stats on a blood transfusion - I believe 1 in a million chance of HIV and 1 in 250,000 of Hep C. They have to tell us these statistics but from what the doctor's have said, they've never seen either of these actually occur.

All of these things that are happening are normal for premies and when the doctor's are worried, then we will worry - and they are not worrying. So we are good. There are steps forward and then steps backwards. This is a tough backwards because it's the first backwards step we've taken. But there will be more!

Day 8 and 9

DAY 8 - And we had our first (of many) cuddles.  Skin on skin contact is very important and so they hospital recommends that when the babies are brought out of their "homes", the sit with you for at least an hour.  So above is the first picture of mommy and baby.  It was nerve racking, because she's so tiny, but it will get better and I'll feel more comfortable each day.

Eyes are not yet open.  The doctor says there is not set time as to when they will open.  All of a sudden they are.  Alice no longer has the wires going into her tummy.  Her PICK (or IV tube) is in her right hand.  As you can see, she is still intubated (that's the tube you see going into her mouth).  They'll keep her on this for a while (don't know how like "awhile" is).  She is back to getting only 1cc of food every 4 hours.
You can see how small her hand is in relation to Scott's finger.  Very, very tiny.  We did learn today that there's a chance she'll need at least one blood transfusion.  Reason for this is she only has about 73cc's of blood in her little body.  And with a premie, the bone marrow does not yet know it's supposed to replenish the blood when it leaves the body.  The hospital needs to withdraw blood from her for testing - at most they'll probably take 3cc's of blood from her.  If she was a lot sicker, then more blood tests would have to be done, which would mean the possibility of more than one transfusion.  The blood for the transfusions are from donated blood (that has been tested up the ying yang) so the chance of her getting HIV or Hep C is very, very, very low.

DAY 9 - Big Brother Max meets his sister Alice (no photos)

Max met Alice this morning and was very happy to see her.  He realizes that she is very, very, very small and must stay with the doctors so she can grow big before coming home.  We didn't know how he'd react, but he was fine.  Kids don't see what we see (the tubes and wires and all the machines) and so he had no concerns at all.

I was able to have another cuddle (much more relaxed this time) while Scott and Max wandered the hospital and had hot chocolate's at Starbucks.

Big thing - her eyes are open (very weird that we had just asked about it yesterday).  They are also going to increase her food take to 2cc's every 2 hours and increase the amount by 1cc every 24 hours and see how that goes.  It's good news for now, as she is digesting the breast milk.  Alice also gained 6 grams overnight, so her weight is now around 809 grams.  The doctor has ordered an x-ray to see how her lungs are doing as her oxygen and CO2 levels are a bit high - but nothing to be worried about.

One Week Old

Alice is now one week old.  Sarah (sister Sarah for those that don't know her) came with me to visit Alice today.  Sarah is trying to get in her Alice time before her scheduled c-section (with twins) that occurs on Monday, October 26th.  We had a nice visit today.

Alice is no longer on any antibiotics (but could go back on them should she require them). She's much more relaxed now that she is intubated.  She has lost weight (down to 812 grams from 894).  This is normal as all babies (full term and premie) lose weight before gaining.  It will take Alice more time to gain the weight back than a full term baby would.

The tube in her nose goes directly to her stomach.  This tube is used for feeding her (basically putting the breast milk directly into her stomach) and it is also used to clear the junk from her tummy as well.

The white patch on her cheek is the bandage and tape that holds the intubater in her mouth.  This is hooked up to a machine that directly pumps the air right into her lungs.  The other "patches" you see on her tummy are to track her respiration and heart beats.

There are wires/tubes that go directly into her belly button right now (but will be removed in the next day or two).  These were hooked up to her antibiotics and are still hooked up to a saline (I think), but they get removed around a week's time because the belly button starts to grow in.  A wire/tube will then get put into one of her hands or feet, but more likely directly into her head (as there's less movement in the head than the hands or feet).

 

The whiteboard (above) is something that all the babies in the NICU have by there bedside.  It's a nice little touch so everyone knows her name and you can see the other babies name and family info as well.

  

6 days old

Had a nice visit yesterday.  Alice is hanging in there.  She's having problems breathing so her oxygen levels have been increased as well as her caffeine jolts (I'm thinking it's like a shot of Red Bull she gets to remind her to breathe).  The breathing is the toughest thing for these little ones - it tires them out so much that they just forget.

She also had her 5 day scan on her brain to see what it was doing - and there's a grade 2 bleed on the left side.  From what we've been told this is nothing to worry about - there are four levels (grade 1, 2, 3 and 4), so this being a grade 2 is okay.  Kids born at full term can also have these bleeds.  She will get another scan at 10-14 days old. 

The nurse had to change her hat yesterday so got to see her head - which has a full head of dark hair (just like when Max was born).  Also got to see a diaper change (very teeny tiny diapers).

The phone rang at 9:30 last night (call display said it was the hospital).  One of the doctor's was calling to say they had intubated Alice.  Which means they have put the tube back in her mouth, down to her lungs to help her breathe.  This is a big relief (we were expecting it to happen, just didn't know when) so now she will breathe with much more ease.  Her oxygen levels have now decreased from 42% to 24%  - another good sign that she is doing better with the assisted breathing.  The doc said she's a strong little girl!

That's the update for now. 

To start, we just want to thank everyone for their love and support over the last couple of weeks and moreso, the last few days with our new little Alice coming into this world so quickly.  She really wanted to get here!

I'm going to start posting everyday or two, her updates.  We love the phone calls, but thought this might be a more efficient way of getting the information out there.

For those that don't know (and I'm sure most of you do know) my water broke on Friday, October 2nd and Scotty and I rushed to Lion's Gate, where we were then taken by Ambulance (our first Ambulance ride ever) to Women's Hospital where I was put on immediate bed rest.  This experience wasn't too panicky, as my membranes had also ruptured early with Max.  There were no signs of contractions or anything.  So we were safe.

Everything was going well on bed rest at Women's for me (I was anxious to get home and be on bed rest rather than at the hospital).  I needed to be patient and see how things were going to go through the weekend.

On Friday, October 9th I was starting to feel some pressure/tightenings in my uterus but nothing that seems too out of the ordinary.  Friday afternoon the nurses and doctors hooked me up to the fetal monitoring system.  Everything seemed good.  The "tightenings" were few and far between (nothing consistent) so I just hung out.  Sarah and Susie were there for a visit (bringing me a cookie and vanilla steamed milk from Starbucks).

Around 4:50pm or so I went to go to the bathroom, sat down and felt a very strange pressure down below.  I immediately got back onto my bed and Susie got the doctor.  They took me to another room for a "peek" and the words out of her mouth were "I can see the head, I'm going to put my scrubs on".  Yikes!  This baby was coming.

Sarah immediately phoned Scott and I was taken downstairs to Labour and Delivery (with Susie and Sarah at my side).  At 5:08pm our little miss Alice Marguerite Link came into this world weighing just under 2 pounds and 13.6 inches.  She even had a little cry when she was born.  Sarah phoned Scott (again) and told him to stop speeding and take his time in getting to the hospital.

Scotty showed up shortly there after.  Alice was taken to the NICU (Neo-natal Intensive Care Unit) and there she hangs out hooked up to all sorts of machines that monitor her every breath, heart beat, etc.

She has strong lungs and is breathing the same air we do (no oxygen required at this point).  Currently she doesn't have a tube down her to assist with her breathing (she's breathing on her own) but is forgetting to breath sometimes (so they may need to put the tube in her).  They say she's a fighter and a strong little one and is doing well for being born at 25 weeks 4 days.  She's peeing and has had one poop.  We haven't held her yet, but are able to touch her feet and hands.  

Max is very excited to have a baby sister.  She brought him a present (a doctor's kit), which he was very excited to receive.  He knows that Alice is very little and sick and has to stay at the doctor's until she can come home.  He's had a cold, so has not yet met her.  Hopefully this weekend. 

I'm pumping breast milk and she's receiving 1cc every 2 hours.  So not much, but at least it's something and it's getting her body used to receiving it.

Right now I'm at the hospital every afternoon for a visit.  Once she can be held more, then we'll start spending more time with her.  The nurses and doctors in the NICU are wonderful and very supportive.

That's all for today. I'll try and update everyday, if not every other day.