Passed the 4 Pound Mark!!

Anna is now a huuuge 4 pounds and 1 ounces (1850 grams)!!! She ballooned a whopping 53 grams overnight and she is doing so well with her weight gain, I can see her hitting the 5 pound mark fairly soon in the future.

We tried mouth feeding her today. I won't get into details for the sheer reason that I might work myself up again. But after trying the bottle and the breast (she wasn't interested more in one or the other because she was so tired) we were basically told it's breastfeeding only, or if we want to bottle feed we would have to wait until she is 37 weeks gestation. Which makes absolutely NO sense at all; why would she know how to suck swallow and breathe at the breast and not at the bottle? She either has this reflex or she doesn't, no matter what she is drinking from. In any case, we will stand our ground with the bottle feeding for our own reasons and hopefully my nerves can last these next few weeks. It has been such a struggle with these nurses and lactation consultants. They really know how to kick a NICU mother down while on the ground instead of being supportive and encouraging.

In any case, Anna is still being tube fed 24mls of breast milk every 2 hours and has been tolerating her feeds very well. They are still fortified but the fortification will be taken away sometime once we go to the Level II hospital to see how she is doing with weight gain on her own. If she doesn't gain enough during that time off, then they will give us some fortifier to continue her for after she comes home. That is also pretty routine, a lot of babies take formula fortifier along with iron fortifiers after birth.

She also has a new pillow, the butterfly pillow I mentioned in an earlier post. It is to help her head get back to a round shape. Right now it is quite extended because of the simple fact that she lies on the sides of her head all day, 24/7. So, with this butterfly pillow there has been a doctors order to give her 1 hour of butterfly pillow time (on her back) each 24 hour period. The nurse practitioner explained to us today that we must insist that Oshawa does the same for her because if she is left to sleep on her sides at all times then she might have long term implications. So in other words, her head might be 'long' up until she's a toddler and it will take her a lot of time to grow out of it if we don't try and fix it now. I have noticed that most of the preemies have this same issue, so it's not anything out of the norm.

So very exciting, tomorrow is her eye exam and they said they will also have to squeeze in a routine ultrasound as well. Anna will also be due for her 2 month immunizations probably later on this week once she is in Oshawa. She is a big girl now for sure!!!

She just has such a lovely demeanor still, just very quiet and taking in the world around her. Loving life, sleeping and a full tummy!!

(We don't have many videos/pictures from today because she slept so sound and she barely even opened her eyes).

Marta & Arthur

T-minus 3 Days??

So I had a little chat with the charge nurse today and rumour had it that the eye doctor would be coming in to the NICU either today or September 1st. We initially weren't sure which day he would come in but it is now definitely Wednesday, September 1st. They don't like to move babies after an eye exam so the earliest she would be transferred is Thursday of this week, pending the bed, and ambulance transfer, yaddi yaddi yadda etc. It's all a big coordinated dance number, and everything has to coincide perfectly for the transition to be smooth.

I also spoke with the charge nurse and let her know that when we go in to see Anna tomorrow we can try to feed her by mouth. We have been having such a struggle with this as some nurses don't feel comfortable and refuse to give us the opportunity to feed her and some advocate for us explaining that we should have already started feeding her by mouth. I just couldn't handle the flip-flop attitudes of everyone so I decided for Anna. If she doesn't take it that's fine, if she does then that's great too, but if we don't try we will never know.

In any case, we will go on with Level III NICU life as it is and as we have for the past 8 weeks. I can't believe 8 weeks have almost gone by and I look back every day at the incredible changes Anna has gone through to get where she is today.

She is now up to 1797 grams which is 3lbs and 15oz and it really shows (what a big girlie!!):



Marta & Arthur

It's Raining Grandmas!

Anna finally got nice cuddles from both her Grandmas! Grandma from Mom's side came to visit a few days ago and today Anna got a visit from her grandma on Daddy's side. This visit included the usual one course dinner spread over one hour, and a subsequent cuddle. These dinners have made quite the impact on the little girl, she now weighs a whopping 1774 grams which is 3lbs 14oz!! Anna's eye exam is probably going to take place on Monday or Tuesday, which would mean that she could be in Oshawa by Wednesday or Thursday of this coming week.

It is really nice to finally see how family can come in and bond with her, now that she is more and more aware of her surroundings. We can't wait for her to be in the level II facility so that more family can come and see her. One thing is for sure, Anna will have a big family to celebrate birthdays and holidays with!

Anna loves to hang out with her grandmas:



As the NICU downtown is now packing things up and babies are now being admitted in other hospitals like Mt. Sinai and Sick Kids, the room is slowly becoming quite empty. Today the nurse that took care of Anna did not have any other babies in her care (usually they have 3 babies in their care during a shift). There is not much else to report, we are just playing the waiting game now.

Marta & Arthur

Patience is Virtue

So as the previous post sums it up, today was a bit of a disappointment. I could hardly sleep last night from the excitement of possibly having her so close to home. However, the key word here is "possibly" and as most things go with us, it's usually not in the direction as planned.

It now looks like she probably won't be transferred until at least Thursday since her eye exam is booked in for September 1st which is Wednesday. They do have a bed tentatively saved for her in Oshawa (which they aren't technically supposed to do), but if a baby is born or admitted before that date in Oshawa, of course they will have to give the bed away to that baby. So then Anna would be pushed back yet again. We inquired about possibly transferring her to Ajax but Women's College had some pretty interesting things to say about them and would prefer not to transfer any babies to that particular hospital. Worst case scenario, September 12th nears and she still hasn't been transferred to Oshawa then I'm sure they will transfer her to Centenary Hospital (Scarborough).

In a way it's good because she's having some desaturations still so it gives her time to be in the top hospital for babies for a few extra days, but the selfish side of us wants her in Oshawa as soon as possible.

Anywho, with this step backwards, we wanted to take one step forward and try feeding her a little bit today, a few drops of milk in her mouth but the nurse on duty today didn't feel comfortable with it. So overall a very frustrating day since I've heard several nurses say to me that she is ready to be mouth fed. So I'll try to ask again tomorrow but I am pretty sure that the same nurse will be on tomorrow as well.

The good news is that she is still developing on track, and is up to 24mls of milk every 2 hours and she has gained another 40 grams. She now weighs 1714 grams which is over 3lbs and 12oz. She is so close to the 4 pound mark!! She is incredibly bigger now than she was just a few short weeks ago, and having the si-pap off her face, we can really finally start to enjoy her little quirks and facial expressions:



Here's to hoping that her transfer comes sooner than later!

Marta & Arthur

No Dice

Called the hospital this morning and it turns out that Oshawa wants Anna to have another eye exam prior to being moved. The reason for this is because the ophthalmologist in Oshawa is on vacation when Anna is due for this exam in 1.5 weeks. Of course the ophthalmologist at Women's College does not work on weekends (?!) So Anna will have another eye exam on Monday or Tuesday and will be moved after that.

We are obviously disappointed but we will be patient and wait.

:(

Adieu Mes Amis!

We could not have asked for better timing. On her moms birthday the decision has been made that Anna is ready to be moved to a level II facility. The charge nurse advised us today that they called Oshawa hospital and inquired with respect to availability. It seems that they will have 1 open spot by tomorrow. So it is almost certain that this will happen Saturday August 28th. The time is still to be determined. We spent half a day downtown today, changing the diaper, feeding and holding Anna. She is without CPAP , on 22 CC's of food and gaining enough weight. I have posted a few pictures.




So the plan is that AmbuTrans will come and pick her up tomorrow and they will take her to Lakeridge level II. After 7 weeks of tests, sensors, ultrasounds, brain scans, blood tests and eye exams she finally strong enough to move and she is 1 step closer to coming home.





Anna and her mom had some well deserved quality time together today and now it is time to prepare for the big move. I am sure the next post will include some pictures of the trip. I have to say that the NICU staff at Women's has been absolutely amazing. Anna has profiled herself as a more than excellent patient and some of the nurses actually got attached to her. So we will definitely visit them in their new facility in Sunnybrook hospital.

We realize that this is not the end of the road, but it definitely is a giant leap forward. Anna will be going back to the hospital where she was born. She will be 2 floors above the OR where she was brought to life. It almost seems like it was only a few days ago while in fact it has been over 7 weeks now. When thinking back to that day, we are very thankful for the vast decision of the doctor to operate right away. Thankful for the SickKids Transport Team that made it to Oshawa from Toronto in a miraculously short time frame. And thankful for the 120 nurses and doctors in the NICU for sustaining Anna's life to the point where she is now ready to return to Oshawa. Last but not least, we are thankful for our family and friends that support us through this time. We can't wait to show off our little, diaper filling, smile cracking, (really) soft skinned, little lady. :)

Her is a short video of when Anna was on her moms lap.She was quite observant.

Tick Tock!

The clock is officially ticking!! It is now only a matter of hours/days that Anna might be transferred to the Level II nursery. So here's how it works; once Anna is off si-pap for a continuous 48 hours then the staff at Women's College will call our #1 and #2 choices of Level II hospitals to see for bed availability. If there is a bed available then they will arrange for a transfer most likely the day after. However, each day that there is not a bed available they will call back until there is one ready at which point Anna will be packed up and sent off on her merry way :) Just 48 hours! She is already on hour 35 so I presume that by tomorrow at noon (after rounds) they will start calling the hospitals to inquire about beds, providing that she is still stable.

I am still in shock at how quickly everything went. She is doing really well off the si-pap and in fact she is doing so well that today we had a mini-photo shoot with her. Despite being contorted in all different positions, she did remarkably well and I think she might have even enjoyed it a little bit too! :) I know I sure did!

You can really tell how much she has grown in the last few days, she really has ballooned up. The nurse explained today that they were trying to have her lye on her back because the premature babies are mostly on their bellies to help them digest their feeds so this flattens the sides of their heads and gives the impression that their heads are really long and thin. But once she is transferred to a level II crib I presume that she will be on her back more often, therefore allowing her soft little head to bounce back to its regular supple shape.

Anyways, we will keep you updated on any news we receive from the hospital regarding her transfer as soon as we hear anything! Thanks to everyone for the well wishes and rooting for our little girl to get strong enough to come closer to home!



Marta & Arthur

Quick Update on Si-pap

So a little update on the munchkin; she is doing really well off of the si-pap! She has been breathing on her own consistently for 21 hours now so almost a full day. In fact, she is doing so well that they actually wheeled away her si-pap machine from her incubator. I am still nervous of course, I hope that she doesn't get tired out too quickly but I'm trying to stay optimistic that this was the last that we've seen of the si-pap! :)

Marta & Arthur

The Big Five-O!

Anna is 50 days old today (7 weeks) and 33 weeks gestation! It's hard to believe that almost two months have passed by because it feels like she was just born last week.

She seems to have surprises for us at every gestational milestone that she reaches. We went in to see Anna today not knowing what awaited us. When we approached her incubator, we found a letter addressed to us on the details of the big move September 12th. Although every incubator had the same letter, I still felt a bit deflated, thinking that we might not make it to a level II before she has to be transferred to the new facility. We just thought she was going to be weaned from si-pap on an 8 hour/4 hour schedule. 8 hours off, 4 hours on. Much to our surprise, this morning at rounds they decided that she will be off si-pap altogether!! No si-pap, no nasal cannula, nothing. Just her breathing away like a big girl! So off to the shredder that letter goes!! :)

Now, before we get too excited we have to be cautiously optimistic that she might get too tired. After all, these things are trial and error. If we don't try, then we don't know whether she can or can't do it. Lets hope it's the former because (and here's the big shocker--drum roll please); if she does well off of si-pap for about 2-3 days, then she will be transferred to a level II finally! Yup, as easy as that. Hard to believe, but if she is able to do this all by herself then she could be in a level II as early as this weekend. This is why I say we must stay cautiously optimistic because it just sounds too good to be true. But hey, let's all hope for the best and of course we don't have doubts that she will be able to do it eventually! If she's not ready now, then I don't doubt that she will be shortly thereafter.

She also surprised us with her incredible growth in the last two days. She now weighs in at a whopping 1614 grams which is about 3lbs 9oz and she is gaining steadily. Her milk is still at 22mls every 2 hours, however, because they decided today to put her back down to 1 hour feedings they probably won't be increasing her feeds for another couple of days. She seems to be doing well with being on one hour feeds though (if you recall they increased it to 90 minute feedings because of some desaturations due to reflux that she was having). The nurse repositioned Anna's feeding tube through her nostril as well. Apparently this is better for them but she mentioned that she wouldn't have done that if she thought Anna would be back on si-pap any time soon. So that's a good sign that they mean business!

So lots of big things happening for little Anna today! Lets all keep our fingers and toes crossed that she will be able to stay strong so she can finally ditch that nasty si-pap machine for good! :)

Here she is saying hi to everyone:



Here she is having some cuddles with Daddy today:



Marta & Arthur

Our Micro-Preemie

As Anna is quickly approaching her 50th day in the NICU, it's hard not to sit back and reminisce about her days there since she was born. She has developed so much and it's been such a joy to see her gain strength and to watch our little frail girl become such a strong little baby. Looking back at these videos is hard, we feel so terrible for her that she had to endure all of this. I speak in past tense, knowing that she still has a long road to travel down before she comes home to us. Nevertheless, she is more than halfway there and we are so grateful that things turned out so well for her!

We got the results of her eye exam earlier and nothing has changed so she is doing great! She is still a stage 0 out of 5 (0 being the best) so we are really happy to hear that. We're not sure of her weight from tonight but the nurse did mention earlier today that she will try Anna off of the si-pap for 8 hours from 12-8am this morning. As I mentioned in my post yesterday, she was supposed to try her off last night for 8 hours but Anna had a couple of desaturations, most likely from the stress of the eye exam so the nurse didn't want to push her. So lets hope all goes well for her tonight and she is able to make that big step to 8 hours off the si-pap.

Here's a little video of her from her early days when she just started on si-pap:



Again, it's just so hard to watch because she's so frail. You can tell how small she was then because they couldn't even do up her Newborn size diaper, she is just lying on it. Her skin was still red and shiny and I distinctly remember how sticky it used to be. Her fingers would stick together as if she had dipped her hand in glue. Her skin was extremely translucent and she could barely open her eyes. But it was all a part of just being born merely days before, she wasn't supposed to be outside of the womb yet. So although she came incredibly early, in a sense, we are blessed to be able to see how she would grow.

And here's a video from her more recent days...you can tell she has grown so much:




Her skin is a nice whiter shade of pale :) Like both her Mommy and Daddy. She is also much more active now and has much time off the si-pap to enjoy her surroundings. Her skin is not sticky anymore and her Newborn diaper fits her much better. Her tiny fingers are becoming more chubbier and her cheeks are finally pinch-able! Not to mention how long her hair has become. She is business in the front and party in the back! :)

In any case, she has definitely come such a long way. I can't wait to be able to compare her 50th day in the NICU with her 1st day at home!

Marta & Arthur

"I can see clearly now...."

Looks like Miss Anna passed her second eye exam with flying colours! We won't know the results yet for sure until tomorrow but apparently the eye doctor mentioned to the nurse that he won't have to see Anna until another two weeks pass by. The nurse then told us that this is a good sign, since usually if there is something awry then he would have to see her again within only one week. Anyways, she did wonderfully, they gave her some sucrose for the procedure (which calms babies down so they don't feel much pain). She didn't even have one spell or desat during the procedure. It's not a terribly "gross" procedure; the doctor just basically opens up Anna's eyes and looks in them with some sort of a magnifying device so he can look behind the retina for any abnormalities. It's more just an uncomfortable thing for the babies since their eyes have to be kept open for a few minutes.

She had some nice Kangaroo time with Daddy afterward which I think really helped to also calm her down. She relaxed and fell asleep in his arms almost right away which made the eye exam just become a distant memory for her.

We also, maybe....maaaybe might have some movement on the breathing "front" soon. The nurse mentioned that they were going to try weaning Anna to 8 hours off the si-pap but since she had to have the eye exam, they didn't want to push her. So instead, she will see if she can stay off si-pap on her next try which will be from 12am-8am this morning if all goes well. Today is day 8 of her being on the 6 hour cycles so I hope that she is able to tack on an additional 4 hours per day to her breathing. If she does then we anticipate that it won't be long until she will be breathing on her own fully. If she can't make the 8 hour span, then the little girl just needs some more time to grow.

Speaking of growing, she gained a nice chunk of weight last night! She was up to 1527 grams, but tonight when she was weighed she lost a little bit and is now 1516 grams (3lbs 5oz). Which is still great, it's an increase of 70 grams in the last 3 days! The nurse mentioned that it's not really how much they gain each day per se, but more about how much they gain every week in total. Somewhere around 150-300 grams per week is considered a good range for growth. And growing she is!! :) She is also up to 22 mls of milk every 2 hours!

So we'll update the blog as soon as we know anything tomorrow with her progress. Let's hope she will do okay, I know our little Anna is doing her best!

Here she is being put back into her isolette tonight. You can tell she has grown so much already in the past week or so:



Marta & Arthur

Strike a Pose!

<---- She's ready for her modeling career! It was so cute, she did a big stretch and put her hands down and just slept on them. I still can't believe how much strength she has in her neck and limbs for a baby so young!

In any case, she's doing great again, she had some spells during the day but she was also straining quite a bit and it didn't affect her breathing or heart rate in any way so they suspect she was a bit on the constipated side. And here I thought she was "completely" like Daddy but I guess I was wrong! ;)

She has gained some weight again and is up to 1475 grams on 20mls of food. They haven't changed her si-pap weaning schedule yet, I guess they want her to be able to tolerate her days without those minor spells first before they change anything with her breathing. In any case, we'll keep you updated on any upcoming changes. It's crunch time now, only 21 days before the big NICU move to the new location and we are desperately hoping that she is well enough to get out of there before that move, otherwise I think we will have to just keep her at Sunnybrook/Women's College in Toronto so that she doesn't have to move twice.



Marta & Arthur

Time flies (when you're having fun??)...

Back in July we looked at August 21st as such a long time away. We were given a discounted parking pass to use by the hospital until the 21st of August when the parking garage closes for good and thought "hmmm wonder where we will be with progress by August 21st, what will things be like by then?". Today is that day and the parking garage is closed. The hospital is slowly starting to pack things up for their big move on September 12th. This means a lot of things, more chaos, organizing, less visitors, no new babies and hoping that the older babies will be well enough to go to a level II by the 12th of September; Anna being one of them.

Her progress, like I mentioned before, has sort of plateaued at the moment. It is frustrating to say the least. Her chart showed that she couldn't handle her entire 6 hours off of si-pap last night and was put back on it 30 minutes earlier due to a spell. I guess because we are so used to her just going forward, I get a little anxious when she takes a small step back. It is a small step back too, compared to other babies, she has no issues at all.

We can't expect too much because she is still so little. Her one neighbour who was recently moved to a level II was 37 weeks gestation when he was finally able to eliminate c-pap all together. Her new neighbour who was just born last week at 32 weeks is still on c-pap as well. Then there were a couple of twins born at 30 weeks who spent one week in the level III NICU before they were transferred out to the level II. So all babies are different. It's hard not to compare babies, I know they are all different, but when compared she is doing wonderfully. We just have to give her time to do things at her own pace.

In any case, she still loves her cuddles and her suckie and we have our little routine now when we go visit her. I think she knows when we are there for cuddles and diapey changes now!

Here's a video of her having some Kangaroo time with Daddy today:




Here she is being put back into her incubator and waving hi to everyone :)



Marta & Arthur

Who's that lady?

She looks like such a big girl already! I think Arthur and I are seeing some resemblance to me now, what do you think?

How cute is she in her new hat? Her Great Grandma made this hat for her before she was born. Funny story, she made this hat accidentally too small and was going to unravel it when my dad told her to just keep it as is anyway. She made a second one just like it but a bigger one that would fit a newborn. So it turns out it's a good thing that Great-G made a hat this small because it fits Anna perfectly! Maybe deep down she knew she would come early :)

Daddy had the privilege of changing the little Pumpkin's diaper 3 times today! First for a pee pee, then after he put the new diaper on the nurse helped Anna clean out her bowels a bit if you will, and then after Arthur put on the clean diaper, again Anna let some more poo out. So fun times for Daddy today! Good thing I wasn't on diaper duty, pheeew....dodged a big bullet there today!!

Anyways she was weighed after her explosive episodes and she still gained 15 grams. She is now up to 1446 grams which is 3lbs and 3oz. She's still on 20mls of food and still doing a 6/6 cycle with her si-pap. The only thing they changed was that while she was off of si-pap they didn't have her on the nose prongs with low flow oxygen. They had her breathing all on her own, with no assistance at all for the 6 hours that she was off each time. Which makes sense, because she was very tired today when we got there for the visit. She probably had a really big day of hard work behind her today but they said that she did really well on her own.

It's really hard to see her on that si-pap ventilator, especially after we get to see her without it. It's also tough because it misshapes her face and we noticed today that it also swells up her eyelids a little bit. But hopefully soon she will be off of it, we're not sure when at this point. We've reached a plateau now where things have slowed down a lot so yes it's frustrating because there's not much in the improvement department but it's also a blessing that she's not taking any steps back. She's healthy and that's all we could ever want for her at this point. We look around the room at all the sick babies and we are so lucky that she is doing so well. Sometimes we forget that she is so young still and expect so much of her so we just have to try and be patient as hard as that is.

Here she is sporting her new hat today:



Marta & Arthur

Lil' Miss Cranky Pants

So it's true; Daddy's looks and Mommy's personality :) But I love hearing her complain, the sweet sound that we've been waiting for all of these years.

Here she is complaining and trying to lift her head off of Daddy. She has a tendency to try and lift her head because she thinks she is strong enough to just walk out of the NICU some days. :) Cute....I can't believe a baby this young can lift and try and turn her head.



It was hard but we decided to take the night off from driving today. Arthur is getting burned out fast, with the commute, then working every day, and then commuting to Toronto and back. So that said, there's not much to report today. The nurse mentioned that Anna lost 7 grams from last night but she is still doing good. She's 1431 grams still and taking her 20mls of milk really well. She is also still on the 6/6 cycle with the si-pap and we totally understand them not wanting to push her. She is having about 3 spells per day typically while she is breathing on her own but that's nothing of a big-huge concern.

We also finished Anna's room today, all there was left to do was to stop procrastinating and put the bedding on the crib. It's of course Liam's old room with a few minor changes and lots of new gifts from everybody for the little Princess. Along with all of her new things, she gets to inherit a lot of her big brothers things, which I am sure he would be so proud to pass on to her.

Now all Anna needs to do is get strong and healthy so she can come home and see all the wonderful gifts she received from family, friends including Arthur's coworkers who are all so anxious to finally meet the little munchkin!

One last video before ending the post. This one is of Anna exercising her cheeks :) Turn up the volume on this one, she has a really strong sucking reflex for a negative 2 month old! Not to mention the crankiest expression ever! Adorable!



Marta & Arthur

On the Up

Hi,

Just a quick note from work while I can: Just called the hospital and Anna gained a whopping 54 grams last night and weighed in at 1438 grams or 3lbs and 2 oz. This means that her feedings have now been increased to 20 CC per 2 hours. Her breathing is still very good, however the doctors decided today (during rounds) to keep her on 6/6 hours of ventilation and allow some time for her lungs to become stronger.

It has come to the point where the doctors and nurses slowly started to talk about moving her to a Level II in the near future. We will keep you updated about Anna's travel plans :)

Art

32 Weeks Gestation -- Wow!

Happy half-way-to-2 months-old birthday Anna! :) She is 6 weeks old today and about 32 weeks gestation, give or take a couple of days.

During rounds today they decided to keep her on the 6/6 schedule still with regards to her breathing on her own. She has about 2-3 "spells" per nurses' shift and they all seem to be during the time that she is breathing on her own. But it doesn't necessarily mean that she is forgetting to breathe. It looks like during her feeds she strains a bit, or coughs which means for a few seconds she holds her breath (as adults we would register as having a spell as well if we did that but it wouldn't happen as quickly as it does for tiny babies). So I think they are just being extra careful in not pushing her too fast because of these spells. She also usually has one when her feed is nearing the end, again because her tummy is so full and possibly from reflux and straining. Speaking of feeding, she is still on 19mls per feed but she has gained another 22 grams and is up to 1384 grams which is about 3lbs and .8oz. Slowly but surely there Anna! :)

But the major thing we have noticed with her the last couple of days is that she really is becoming more aware of her surroundings. She is starting to develop a little personality now instead of just lying around. She doesn't like it too much when she's moved so she is now starting to literally voice her concerns. Here's a little video of Daddy setting up for Kangaroo care and Anna making a bit of noise because she was moved from her isolette:



So right now it's just a waiting game. Sometimes we forget how little she still is because she IS 6 weeks old now, but technically she is still negative 2 months gestational age. :)

But with patience, once Anna is off the ventilator and breathing on her own for 3 straight days, she will officially be booted out of the Level III NICU. It's tough waiting but we know in her own time when she is ready she will let us know. :)



Marta & Arthur

Just cruising along...

Anna is still very stable and is doing really well! She was in a bit of a bad mood today, it was cute seeing her cranky. I'm sure it won't be so cute at 3am every night but hey, we still can't wait! :)

We didn't get many videos of her today, seems like we've been having new nurses the last few days and they don't really know our routine so they do their own thing while sort of putting us on the back burner a bit. It can get quite challenging and anxious dealing with so many different nurses especially when you have a new one every other day and they all have their own style of nursing. You can also tell which ones Anna likes, I sense that if she's had a few bad nurses in a row manhandling her then she might be a little put off by it and become cranky.

Nevertheless she is doing fantastic and is still cycling off of si-pap every 6 hours. The nurses said that she's handling that really well, with no problems at all. Hopefully tomorrow they might wean her a bit longer. We are so excited to finally have that giant breathing tube off of her for good one day!

Right now things have leveled off a bit in terms of progress, but better to be slow than for her to have to take 2 steps backwards because she gets too tired.



Marta & Arthur

Crossed the Three Pound Mark!

High-five Anna! Anna has slowly been inching her way to the three pound mark and she finally made it today! She is officially 3lbs and .04oz (1362 grams) and that's even after a big poo! She is still on 19ml of milk every 2 hours, and her milk is slowly fed to her over a time of 1.5 hours. So she literally eats non-stop throughout the day. But slowly down her feeds like that has helped her tremendously with the reflux. She did really great today so they will keep her on this schedule.

When we got there today we had a cute little surprise. The day nurse had clothed Anna in a cute little baby hospital style Kimono. We asked the night nurse why but she was a bit on the ummm..."unsure" side of things regarding pretty much everything. Anyways that's a whole other post. So in any case, it looks like Anna might be clothed from here on, probably to start helping her regulate her own body temperature instead of relying on the incubator. But that's just a guess. Nevertheless, it's SOOO CUTE!! I'll have to bring in some of the hats that her Great Grandma made for her now that we're able to see her wear clothes more regularly.

The other thing that Anna surprised us with, she is breathing 12 hours out of 24 on her own now!! Amazing little girl! They have her breathing 6 hours on low flow oxygen, and 6 hours on si-pap and they alternate this throughout the day. She'll be fully breathing on her own before you can say "Level 2 here we come!".



Marta & Arthur

4 Generations of Konceseseses

Great Grandma and Aunt made it! It was really wonderful to see so many generations of Konc(z) ladies in one place. Great-G also made some really cute hats and clothes for baby Anna, can't wait for her to be able to wear them!

Anna was such a good girl today, she did really well exercising her lungs today and they are hopeful that she will be completely off of si-pap and on the low flow nasal prongs for good within the next week or two. That's great news because that is the major hurdle left for her to be transferred to a Level II hospital. As most of you know, Sunnybrook/Women's College will relocate as of September 12th. However, we were told today that she will most likely be in a Level II hospital before then. Of course they can never guarantee this since anything can happen between now and then. But judging by her excellent progress so far, they don't have many doubts that she will be out of there soon. No earlier than 2 weeks from now, but no later than 4 weeks either. We are going to start feeding her by mouth sometime next week or the week after so that's exciting too. You can tell that she is just itching to do the work by herself, she is sucking like a champ on her suckie and today she even took some sucrose by syringe as if she's been doing this since day 1; she's telling us that she is ready and willing!

Once she is in a level II, her requirements (other than no health issues of course) are to exclusively eat on her own every meal (so no tubes) and that she not lose any weight. Also, that she does not have any apneas and is able to breathe exclusively on her own.

About 3-4 days before she is ready to leave Sunnybrook, they will phone Lakeridge Oshawa to see what their status is for beds etc. So let's hope that they will be able to take her, that way she will literally be blocks from home. If not, then the next hospital over is Centenary which is in Scarborough. We wouldn't mind that either, after all, anything is closer than driving straight downtown to Toronto.

At the moment she only has issues when she is eating. Apparently it looks like she has some reflux issues which is completely normal with preemies. So when she is at the end of a feeding, she starts to cough because her tummy is full and she is feeling the burn of the reflux a bit. So when she coughs she strains and therefore she has some de-saturations, causing some alarms to go off. But these are definitely not related to her breathing in any way so "technically" her desats are not any cause for alarm...no pun intended. At the moment they will leave her as is, they are just lengthening the time it takes for her to eat from1 hour to 1.5 hours to see if she can digest the last little bit of food better. She is still on 19ml of food now every 2 hours and has gained some more weight (1336 grams which is about 2lbs 15oz). If her reflux doesn't go away in a few weeks then they will start giving her some meds like Zantac for example.

So big things will be happening for little Anna in the next 2-4 weeks. Everyone, keep your fingers crossed for the little Pumpkin so that she can come home to us soon!



Marta & Arthur

Oh what a life...

Anna is doing really great today, they decided to keep weaning her off of si-pap but at a different pace. She is now doing 4 hours off of si-pap and 8 hours on continually. She does 4 hours off like it's not a big deal at all so I think they are all optimistic that by next weekend or so she will most likely be off of si-pap permanently. Of course things can always change, but we will remain optimistic with the staff that she can do it by then.

She is still on 19ml of food but she seems to have some reflux and digests the last few mls a bit too slowly so sometimes it comes back up through the tube. That's of course normal for babies this young. Her weight will fluctuate as well for the next little while because her body is working hard to develop strong muscles so she can breathe on her own, therefore burning more calories.

We were doing Kangaroo care today and she was frantically looking for milk so it was really adorable that her innate sense of feeding is so strong. She will do great once her mouth feeds start, I'm positive of that!

We also learned how the incubator temperature works today. I was wondering since every time we are in there, the temperature seems to be different. So we were told that the incubator regulates itself based on Anna's temperature at the time. So if Anna is feeling a bit cold then the incubator will compensate for that by warming her up. Anna will have to regulate her own temperature once her skin is a bit more developed and then she can be transferred to a NICU crib at room temperature.

Great Grandma and Auntie didn't make it today to meet her but I'm sure once she is feeling better they can meet sometime real soon. Maybe Anna will be off si-pap by then and they can see her pretty face!

So right now Anna pretty much just sleeps and eats (oh what a life!) :) Lets hope she gets nice and strong in the next couple of weeks.



Marta & Arthur

Daddy Day

Anna got some really nice Kangaroo time with Daddy today and she was lovin' every minute of it! I'm not sure if Daddy was heating Anna or if Anna was heating Daddy but both were a a couple of Dutch ovens by the end of the session. How cute...

Anna did really well with her breathing trial last night. They kept her on for 8 hours instead of 6 hours. She did however start to get a little tired so they decided to let her take the rest of the day off and put her back on si-pap (no weaning for the remainder of the day). She will probably go back to her weaning schedule starting tomorrow, but not such long hours at a time. More like 4 hours off, 8 hours on si-pap. We did get a chance to talk to the doctor tonight and he mentioned that he thinks she might be completely weaned within the next week or so. I guess once it happens it happens fast.

She is 1303 grams today which is a slight loss, but I suspect it's from the explosive poo that Daddy cleaned up right before her weigh in. :) She is up to 19mL feeds and is tolerating them really well. She loves blowing milk bubbles after each feed!

We are really anxious to have her home, especially now that we see how well she is doing and how fast she is growing. But I just have to tell myself that I can't have her until October, so that way if she comes before then GREAT! But if she doesn't, then I'm used to the fact that it will have to be October. After all, that was when we were supposed to have her in the first place; October 4th at 38 weeks and 3 days gestation.

Here's Miss Piggy (from the nose prongs) sucking on her hand, so cute...seems like today was definitely a "suckie" day! We finally managed to track one down for her later on before we left and she was just such a happy little girl sleeping with her suckie.



She has a big day tomorrow, if things go as planned, she's hopefully meeting Great Grandma and Great Auntie for the first time ever!

Marta & Arthur

Big Day!

What a big day for little Anna! She did so well yesterday breathing on her own for the 4 hour trial, that today they decided to take her off the ventilator completely and give her a chance to show off! She did 8 full hours of breathing on her own! When we left the nurse decided to give her a break since she was getting a little tired so between 8pm until 12am she was back on si-pap. But from 12am until 6am she will try her again without the ventilator and let us know tomorrow morning how it went. They don't want to tire her out too fast but she just really has been impressing them lately so they thought they would give it a try and see how she does.

Daddy was able to do the diaper change today and clean Anna up a bit, he really is a natural at it, but she again, typical self was fighting like a little rascal. She just really doesn't want to be in a diaper :)

They increased her fortification in the milk again as she was gaining weight just a little bit too slowly but now it seems that she gained a TON of weight overnight and is now 1323 grams which is 2lbs and 14oz. That is an increase of 82 grams! She is so close to the 3 pound mark!!

We are so proud of her trying so hard to get better and grow. She really is a little trooper!

Marta & Arthur

Short Video

Just to add to Arthur's post, here's a video of Anna from today. The nurse is removing her little nasal oxygen tube that they put in place near the nostrils while she was being weaned from si-pap today. She doesn't like the tape being removed from her little cheeks so she's letting out some cries (I've been waiting 3 weeks to hear her cry again and here it is!!) :)



Also, they have increased her feeds to 18ml and she now weighs a whopping 1241 grams which is about 2 pounds and 11oz (whoohoo go Anna go!!). She is well on her way now with the consistent weight gain!

Marta

I see you!

Last night's eye exam results came back and we could not have asked for better results. She is in Stage 0. This needs an explanation: there are 5 "stages" for her to progress through with respect to the development of the eyes and mainly the retina. She is in Stage 0, which is perfect progress given her gestational age. When they do these tests they look for "retinopathy fibroplasia" (Anna dares you to say that 3 x really fast) or RLF. RLF means that there is an abnormal growth of the blood vessels in the eye which can cause retinal detachment. It is a very dynamic disease and could cause blindness. These are the 5 stages that classify the severity:

• Stage 1 blood vessels not completely developed.
• Stage 2 enhanced grow of blood vessels (more than normal).
• Stage 3 is extraretinal fibrovascular tissue (bleedings, rigid pupil) .
• Stage 4 is sub-total retinal detachment (severe vision loss).
• Stage 5 is total retinal detachment (complete vision loss).

As mentioned, Anna is a stage 0 meaning that they did not find any abnormalities what so ever. These eye exams are fairly intensive. The baby is propped straight up and put under anesthetic. Then the poking and prodding in the eye starts and it is not a pretty sight. She will have another exam in 2 weeks.

As you can see from the picture, they put nose prongs on her. On rounds this morning the doctors have decided to wean her off the SiPAP! This is very exciting and hopefully the beginning of her not needing any support. She will be off the machine 4 hours out of the 24 for the next few days. Then, if she handles that well, 8 out of 24, 12 out of 24 etc. She is doing amazing with her breathing as well as her weight gain.

We will continue to keep you posted.

Arthur & Marta

The Big Test!

Another day, another step. Miss Anna had her eye exam today. We were a bit thrown back by this because we've sort of been waiting for this day since she was born and we were not informed in any way that this day was finally here. This eye exam is one of the big steps which test for abnormalities in vision and developmental abilities to name a few. We should get the results of this big test tomorrow so we are anxiously awaiting good news for her!

She is on 16 ml feeds but she is having a bit of trouble as some of the milk, about 3mls comes back up. So the nurse advised us today that she's still getting 16 mL but 3 of those are put in very slowly so that she can digest it easier. There's been some talk about reflux by a couple of nurses but nobody has officially advised us yet that this is what she has. So it could just be nothing or it could be that she just has a bit of reflux which is very common in premature babies.

She also had 2 spells today but they weren't concerned since one of the spells was during the eye exam (which can be very normal for these babies as it's a pretty stressful event) and the other spell was during one of her poos, but apparently it was a BIG one! So when they strain a bit too much then they sometimes have spells. Again, all very normal and doesn't mean that she has tired out from the si-pap in any way. She is still doing incredibly well on the si-pap!

Will update tomorrow on the results of her eye exam!

Here's the little Pumpkin getting ready for her Kangaroo care -- (as you can see it's quite a production just to get these little ones out of their incubators). But apparently from what I read, back up to as short as a few years ago and parents were not allowed to even touch their babies let alone have Kangaroo care with them. So we are extremely lucky to be able to have this time with her:



Marta & Arthur

Working Hard

Hi all,

A quick message to keep everybody updated. Anna gained another 40 grams overnight and has reached 1197 grams now. As a consequence, her feedings have gone up by 1cc to 16cc every 2 hours. As mentioned we might start to try her with manual feedings soon as opposed to the line that goes directly into her stomach right now. It will be trial and error but something tells me that she will pick this up fairly quick. Especially given the way she appreciates her soother right now. (It's her best friend) She has been spell free again last night and continues to work very hard to come home.

Art

Miss Popularity

Anna was Miss Popularity again today, she had many many visitors from her two Aunts, Grandpa, Mommy, Daddy and student nurses. Just a big-big day for her overall and she handled it like a pro. We also got some cuddle time in again today and she did very well considering we were both hot as ovens. By the time it was done they had to peel her off of me.

She is still doing really great on si-pap, she's on room oxygen level and doesn't have any spells or anything major. She's also still on 15mL of feeds and has a few spit ups now and then but what baby doesn't. She is up to 1157 grams (last nights weigh-in, not sure of tonights weight yet) which is about 2lbs and 9 ounces. I really felt that she was a bit heavier when I was holding her today. Her blood work all came back normal as well which is great!

Arthur spoke with one of the doctors today and she mentioned that pretty soon we will be trying Anna on drinking milk and swallowing it. She said we will probably start trying it at 32 weeks which will be next week!! That's really exciting as it's one of the requirements for her to accomplish to be discharged. It will be very touch-and-go as some babies really can't develop the whole "must suck -- then swallow" reflex that early on but we will see. So far she has outdone herself with everything so I'm pretty sure she will do great with that as well when the time comes.

They also explained how the weaning of the si-pap will go along. That no doubt will come soon as well although that's something that we can't predict how soon. It all depends on Anna's stability. Once it's time to wean her they will do it so that she is off of the machine for just a few hours per day and slowly increase that each time until she is able to come off of it for good. So I think some big things will happen for her development in the next 2-3 weeks.

Here's our little monkey right after her Kangaroo care, very alert and showing off to everyone with big stretches :)



Marta & Arthur

When you're smiling...

Looks like today Anna was on top of the world! She just couldn't stop smiling. We're not sure if she had gas but it didn't look like it :) At least we can think that she was genuinely smiling at the world and feelin' good.

She is still doing wonderfully on si-pap and breathing like a champ. She weighs 1157 grams now which is about 2lbs 9oz. Her feeds are still 15mL per 2 hours though. She is getting some routine blood work done tomorrow so we'll get the results of that in the morning...

Other than that, she's just smiling away, lovin' the world :)



Marta & Arthur

Quick Update - Part Deux

Ok, so I managed to get a couple of shots on to the computer without bringing out the hammer.

This picture is from when I was able to hold her without the si-pap on. She did a few smiles and winks at us, but we think she was just taking a poo. :)
It's really hard to believe that they can't see yet this early. She fools us, that's for sure!

Here's daddy doing a diaper change and surprisingly Anna is tolerating the changing well! Although she did try and kick and push him away as soon as he was putting the new diapey on. :) She really just likes to be "free as a bird" and let it aaaall hang out!



Here she is si-pap-less again, breathing like such a big girl! Later on, once the nurse put the si-pap back on her, she kept trying to push it off her face and moving her head around trying to show Mommy and Daddy that she really can do it on her own. (That tube in her mouth is her feeding tube which she gets all her milk through. At this age she hasn't developed the swallowing reflex yet).

PS - she REALLY is a Daddy's "mini-me" isn't she? :)

Quick Update

So I've been having some computer problems and trying to manage the videos and pictures we captured today. They were some pretty good ones unfortunately the computer is not cooperating so before I take a hammer to it, I'll just do a quick update from the laptop.

Anna is doing really well today, we managed to get there just in time for one of the diaper changes/weigh-ins. Daddy got to change the diaper and take her temperature and the whole time this was happening, Anna was not on any ventilators and just breathing on her own. Then after the diaper change, I was able to hold her in my arms for about 5 minutes so in total we watched her today not be on any ventilators for about 15-20 minutes. It was really great to see considering that she was just extubated about 2 days ago. We were really amazed with her, she kept up her breathing, she didn't dip, her heartrate was excellent and she wasn't stressed out.

We learned today what the si-pap sort of does for her...it keeps her lungs inflated slightly at all times so that they don't have a chance to fully collapse, therefore making it easier for her to take breaths. So it was definitely a huge deal that she was able to work her little lungs like that for such a long time without getting tired.

She is also gaining some good weight, she is up to 1137 grams now so she is steadily going up. Her feeds are still 15 mL per 2 hours.

I just can't believe we watched her breathing without any tubes etc for that long. She also amazingly didn't have any spells and we had to double check that with the nurse because we thought it was a mistake on her paperwork. Like I mentioned before, she usually had about 5-6 spells per day when she was intubated where she sort of forgets to breathe, usually when she's in a deep sleep. So it's really a great step for her that she didn't have any at all today and she is on si-pap.

I will post some pictures and videos probably tomorrow if we can fix the computer. :)

Marta & Arthur

The Life of the (Preemie's) Brain

I'm always wondering if Anna is aware of us or her surroundings, when she will be able to see, if she can hear us or distinguish our voices.

I found this article from the Star on the preemie baby's developments. I'll just highlight a few tidbits but you can find the full article at http://www.thestar.com/news/insight/article/834401 (it's a pretty long read).

It states that "a preterm infant can hear at 26 weeks and smell at 29 weeks, and has developed the ability to see by 32 weeks. A fetus will withdraw from pain at 19 weeks, and the neuronal connections needed for a fetus to understand that something hurts are in place by 28 weeks. And by 32 weeks after conception, a fetus has defined sleep states, including deep, REM sleep.

Last year, researchers from the Netherlands reported that 30- to 38-week-old fetuses have short-term memory, evident in the fact they habituate to a vibrating, honking device. When first exposed to the device (it was placed on the abdomens of pregnant mothers), the fetuses squirmed and their heart rate went up. Ten minutes later, the fetuses did not react to the noise. They also showed little reaction when exposed to the noise after four weeks had elapsed.

Studies like these and his own experiences in neonatal wards have convinced Lagercrantz that preterm infants can lay down memories, a sign of consciousness.

“I think they do have short term memory,” he says, “but very primitive. They are not thinking of what something costs or planning for the future.”

Interesting stuff!

Marta & Arthur

Still hanging in there...

Well the little monkey is still breathing on her own and not getting tired of it! That is great news! I hope she is able to keep it up. Her saturation levels were really good today which means she is getting a good amount of oxygen and her heart rate was great too. Her weight is essentially unchanged but she definitely hasn't gained any that we know of yet (we will know by tomorrow morning). We don't expect her to gain anything yet because right now she is just adjusting to doing all the work. We're also not going to try and hold her any time soon, I really don't want to disturb her at this point. She is soooo sleepy, she's definitely less active right now but that's ok, we just need her to grow and get strong. We'll let her put on a show for us next week when she's a bit stronger!

So a very uneventful day but that's what we like to see!

Here's the little sleepy head:



Marta & Arthur

1 Month Old!!

The Princess is finally one month old!! We had a mini celebration for her birthday and dropped some chocolates off for the wonderful nurses who have been taking care of her the last 4 weeks. Of course this is never the way you imagine to celebrate your baby's one month birthday, but we are so happy that she's strong and healthy and most importantly; with us. She is one loved baby, that's for sure!!

Also, we were SO excited to learn that earlier this afternoon they extubated her and she is now on Si-pap exclusively (which is one step down from c-pap but essentially the same device). We are so proud of her and hope that she continues to breathe on her own so they don't have to intubate her again.

Along with si-pap comes the ability to see her face during diaper changes. It has been a looong time since we last saw her precious face. Her nostrils are a bit stretched out from the tubes but you can finally tell that she looks almost full term. Her cheeks are chubbier, her eyes are wider and her hair is longer. Maybe she is starting to resemble Mommy a bit too?? ;)

Last night while still intubated she weighed 1137 grams. However, at tonights' diaper change she weighed about 1094 grams. The nurse thinks it might be the lack of all the other tubes and she is probably burning more calories now that she has to breathe on her own.

It was really funny, when they weigh her she has to be lifted off the bed to see the weight of the bed with her on it and without her on it to determine her weight. While she was lifted up in the air she grabbed a hold of some tubing and wouldn't let go! We caught her holding on for dear life! The nurse could barely unclench her little fist to release the tubing. I can't believe how much strength she has already for such a young baby. :) Little monkey...

Here's a little video of her getting her si-pap "hat" back on after her diaper change:



Another video of her little face:



Marta & Arthur

Double Jointed Monkey Toes

Seems like every time we're visiting Anna, the nurses comment on her double joints. We were wondering about her middle finger so they said it's most likely double joints. But tonight the nurse commented on her big toe possibly being double jointed as well. I'm not so sure about that, (I think she has Mommy's monkey toes), I could probably write out the national anthem with my toes if I tried. ;)

Nevertheless, it's so cute!



Marta & Arthur

30 Weeks Gestation!

Princess Anna finally hit the big 3-0! The nurses were so nice, they made her a little card with the imprints of her feet and left it on one of her monitors for us to find.

She is doing really well, her feeds are up to 15 mls per 2 hours and she has gone up in weight up to a whopping 1102 grams! So her weight is steadily going up, which is one of the requirements of her transfer down to a Level II NICU.

Her breathing is better, she is still intubated but her tube has a leak so they left it on her on purpose, to sort of wean her down steadily. Her gases have also been turned down so that she does most of the work now, but in case she forgets to breathe, the tube is there to help her. They said she is still a bit lazy in that she forgets to breathe when she sleeps. And the problem is that she apparently is a deep sleeper. (I don't know where she gets that from) :)

So they're not going to replace her tube, and they're not going to re-tape the leak because her transfer over to c-pap will most likely be soon. Again, they discussed this morning during rounds and decided to just let her stay on the tube for a bit longer. We are anxiously awaiting their decision, but don't want to rush anything either because we wouldn't want to see her re-intubated. Staying on the tube too long can cause long term lung damage, however, being put on c-pap too soon can cause her many short term problems and in the end, re-intubation. Vicious cycle, and it's a really fine line between being ready and not being ready for c-pap for good.

But she is doing really great and steadily getting stronger!

Here's a little video of her gazing around just before passing out. She just had a diapey change so she is very tired from fighting and kicking the nurse so hard not to put a new diaper on...




Marta & Arthur

She's Getting Bigger!

So it looks like there's an upward trend in Anna's weight gain. Today she weighed in at 1070 grams (2lbs 5oz) which is really great! It's a gain of 23 grams overnight. She is still on 14mL of milk every 2 hours, I didn't ask why they haven't upped it. But my guess is because they want to get her breathing under control first. The one nurse mentioned that their motto is "breathing first; eating second".

So speaking of breathing, they also reduced some of her gases in preparation for c-pap and apparently she's tolerating it well. Not sure when they will try to wean her off of the tube for good but it's any day now so it's kind of exciting. I hope she is able to do it, I would hate to see her re-intubated yet again for the 5th time. So everybody, send some positive thoughts/wishes Anna's way so that she knows she has a crowd of people cheering for her!!

We didn't go to the hospital today just so that we can catch up on some household things and sleep. So I'll post a video and pic from the visit yesterday instead. We'll definitely be there tomorrow, it'll be her 30 week gestational/technically 1 month birthday!!! Very excited, we've been waiting for this day anxiously!!




Marta & Arthur