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.