Day 58 - August 31, 2007

Hello there,

Today we will let the pictures do the story telling. These are all from today and in no particular order (OK Shelley?).

Liza and I checking out Ciaran


Shay's ever chubby legs


Ciaran relaxing in his bed


Liza holding Shay


Ciaran with daddy

Ciaran with Daddy again


Ciaran in bed - NICE OUTFIT!


Shay with his soother (from a few days ago)


Shay - notice what is NOT on his face?


Shay again, too cute!


Day 57 - August 30, 2007

Hi everyone,

Eight weeks ago today that Ciaran and Shay came into this world...and boy what a difference two months makes!

Today we had another first - Ciaran's first bath...yes kinda crazy that he didn't have a real bath for the first eight weeks of life...hope he doesn't hold it over us when he grows up! He seemed to quite like it and tolerated it quite nicely. He continues to make progress overall. Last night he weighed in at a whopping 2410 grams, approx 5lbs 5ozs. He is getting to be quite big now. We could not be more proud. He still has preemie behaviour with his breathing and going to the 'bathroom' but we hope to see him grow out of it shortly. Liza is able to dress the kids now and today Ciaran had the cutest preemie outfit on courtesy of Cassandra and Jodi.

Shay had another good day today and got out for a cuddle with mom. He is also dressed up in his cute preemie outfit!. He is more settled on his breathing and spent the bulk of day with no extra oxygen support. It is so nice to see his face with only the feeding tube attached.

Over the last few days we have had some visitors to the TCN. The cool thing about these visitors is that they are some of the nurses, respiratory techs, social workers and doctors from the NICU. They have come on their time to drop in to see how the boys are doing. It's a constant reminder that we are in a special place and we have met some very special people! Again, we are so very blessed!

Short one today and that means that things are good!
Cris, Liza, Ciaran and Shay

Day 56 - August 29, 2007

Today we had a good day again with the boys. I still find it remarkable the difference between the TCN and the NICU. It is just really quiet in comparison. A few more babies went to hospitals closer to home today and now there is only 1 extra baby in the same room as us. It's nice.

Shay had his first bath today with mom, he took it really well. He continues to do well, very steady and slowly but surely growing. He gained a lot of weight over the last 24 hours and is now about 2230 grams, or approx 4lbs 15ozs. Yes, he is almost 5lbs!!!!

Ciaran had an important day as he got his weekly ultrasound. We know that things have slightly improved again this week and we just continue to pray that it will continue to improve in advance of his appointment in mid-Sept with the doctors. He continues to have some extremely minor issues with his breathing but that is ok, he is allowed :)

That's it for today!
Cris, Liza, Ciaran and Shay

Day 54 – August 27, 2007

Sorry again for taking a few days to write again. Now that the boys are upstairs, I find that I am much busier during the day. As I mentioned in an earlier blog, we are more responsible for the care of Ciaran and Shay now that they are in transitional care – which I am loving.

Today was another exciting day. The boys graduated from their incubators and are now residing in cots. This means that Ciaran and Shay are now wearing baby clothes – which makes them look so much more like babies – may sound weird, but true. My good friend Sacha’s sister Lisa kindly lent me some preemie clothes which has been fantastic as they are just inching towards fitting into newborn clothes so it is great for the meantime - and they are nearly wearing stage 1 diapers – they are getting so big!!

The boys had a difficult night last night. They were having spells most of the night which the nurse thought was ‘normal’. Bev came in, in the morning and realized that their feeding tubes were not going directly stomaches – totally could have been prevented - a bit frustrating! However, I am reminded again - how lucky we are to have had the phenomenal care that we have received so far...

Anyhow, that is all for today. Until tomorrow...
liza :)

Weekend Pictures

Shay's mini hand


Shay checking out his mommy


Shay holding onto his soother - he has figured out how to do that now!


Ciaran laying in his new cot - no more isolette for him!


Ciaran out for a cuddle with his mom


Proud mommy and son Ciaran

Day 53 - August 26 - Mass day

Today started off at Holy Rosary Parish for an 8:30am mass. This is the mass Father Dave is holding for the boys. Personally this was a bit overwhelming. Holy Rosary has been including the boys in the intentions portion of the mass for many weeks now but this was different. With our family and friends on hand this mass had a special nature to it. Father Dave did something a bit unexpected near the conclusion of the mass. He started talking about the boys and our family. It was a special moment for me and Liza and one that gets me teary just thinking about it. We owe a tremendous amount to everyone we know but I think we owe that little bit extra to Father Dave and Holy Rosary Parish.

It was three weeks ago today that Liza and I met with the doctor from Sick Kids. We were discussing some issues with Ciaran and I must say that we both left the meeting in a bit of shock and despair. We just knew that Ciaran was still having some issues and that intervention might be necessary to ensure his long-term health. It was tough. It was later that night that Father Dave called. We had spoken to him a few weeks earlier and he was going to call us to come visit the kids. He could not have called at a better time. He offered to not only visit but to baptize the kids. It was an opportunity and blessing we could not give up.

The following day - August 6th - Father Dave visited, baptized the boys and even took us out for lunch at one of his favourite spots, Fran's restaurant on College St. This was a pleasure. What we didn't know at the time was that something was starting to change with Ciaran. Within a few days his condition started to improve. Now three weeks later, he is making such big improvements that he has caught and in some ways surpassed his brother. We are so thrilled! We know he is not out of the woods yet (nor is his brother) but we do know that he is a child of God now and that he has a fighting chance to continue making all the milestones he is supposed to make.

Liza, Ciaran, Shay and I are truly blessed to have the support of Father Dave, Holy Rosary Parish, our family and friends. Words cannot ever describe the feelings we have when we try to understand how much people will go out of their way to support us. It is truly special and we thank you all.

Father Dave - our sincerest thanks for all you have done. Your support has been tremendous and we could not thank you enough.

Cris, Liza, Ciaran and Shay

Day 52 - August 25 - Post Graduation Report

Today is the first full day of being in the TCN (Transitional Care Nursery). The boys have been here now for about 3/4s of a day and I think they have adjusted well to this point. I'm still not sure that we have fully adjusted yet though. It is hard to believe that moving up one floor in the same hospital would not be such a big deal but it is. No matter whether change is good or not, transitions are always difficult. The realization that boys are really being prepped to come home means that the journey for our family is really just starting.

The first thing that is noticeably different is the name of the area in the hospital where the boys are: TCN instead of NICU. This is no longer 'intensive' care, it is transitional care and you realize quite quickly that there is only one goal: get the children home. I think this is the scariest part of all, that we will have take care of these little monkeys full time - with no nurses on nights!!! I am completely looking forward to waking up and they are home 'cause that is all I have looked forward to since we found out that Liza was pregnant. It is going to be a grand day when we load them up and show them around their new room!

The boys are still continuing to act like little preemie babies but are doing great overall. They are having very few 'spells' and are growing like weeds. Ciaran is now 5 lbs 2 oz and Shay is nearing the 4 lbs 12 oz. They are 2 of the larger babies in the TCN currently and we hope to have them out of the isolettes in a few days.

Tomorrow is the mass that Father Dave is graciously offering in their name. I hope you all can join us.

Cris, Liza, Ciaran and Shay

Day 51 - August 24 (Graduation!!!)

Very exciting day today!!! The boys have graduated to the Level Two nursery (we are no longer in intensive care)!!!! The Level Two nursery is considered a transitional care unit where babies who are more stable go. I can't believe that both boys were sent upstairs at the same time. The feeling is one of both excitement and trepidation as change is both exciting and scary!

The level two nursery is much quieter than level three. Alarms continue to go off - but nothing like they do downstairs. Also, there are no ventilators on the fourth floor which makes a huge difference in noise level.

The level two nursery is much more parent oriented. We now will need to bath the boys, work on breast feeding, and become more responsible for their care. Basically, they are starting to train us for bringing the boys home.

We will be staying at Women's College Hospital for the duration of Ciaran and Shay's hospitalization because Ciaran is still being monitored by the Specialists at Sick Kids. Most times, at this point, the family would be transferred to a level two hospital closer to home. In our case - that would be Oakville Trafalgar or Credit Valley. To be honest, we are good with staying put. Bev, our nurse will continue to be Ciaran and Shay's primary caregiver which is gold....and we are comfortable here - we have had unbelievable support - the staff knows us well and we know what to expect....we couldn't ask for better care!!!

That is all to report for today! We are so impressed with the growth of the boys in the past two weeks. The human body is truly an amazing and complex thing!

A sincere thanks for your continued positive thoughts and prayers - clearly they are payin off!

Day 50 - August 23

Apologies for not posting for the last two days. Things have been very busy and Cris and I are completely exhausted. For this reason, I am going to be brief today!

We are glad to say that we have more to celebrate today!

Shay has been off all breathing support for 18 hours. He has done absolutely amazing - no spells and looking strong. Often, the babies tucker out with this transition and have to go back on low flow - but the progress he has made to this point is unbelievable! He is a trooper. He is also becoming a chubby monkey - he is definitely catching up with Ciaran when it comes to weight - he is 4 lbs 8 oz at the moment - he is working on a triple chin and some arm and leg rolls - too cute!

Ciaran has also had an exciting day! He has been on staight low flow with the smallest amount of oxygen for the past 24 hours. He is totally cruising - he is not having any spells (a few dips). He looks great and looks like he is loving the freedom of the low flow machine - he too was starting to hate the CPap machine.

Speaking of machines - both boys had all breathing machines rolled away from their incubators tonight - the Respiratory therapists feel that they are on their way at this point - we are keeping our fingers crossed - although we di recognize that it is possible that we make take a few steps back as the boys continue to develop the strength and stamina to breathe on their own.

We had contact with the Specialists at Sick Kids today who continue to monitor Ciaran. They are happy with how things are going at this point. We have an appointment book mid September to figure out exactly what the next steps will be - it already has been a long waiting game and we will continue to wait - the fact that he has gone seven weeks with no intervention is amazing - he is a true fighter!

That is all for today! Love days like today...really makes us realize that the boys are really growing up!

B

Day 49 - August 22, 2007

We have a few things to celebrate today. First of all, Shay was off all breathing equipment today for 4 hours and he did not have one spell! It felt sooo good to see him with no support in his mouth or nose....it really was quite a moment. He was so calm and peaceful...he tends to fight the CPap machine at this point - which is his indication to all of us that he is good and ready to be free of it! He is so close!

Ciaran also had a great day with regards to breathing. He was on low flow for 12 hours which is unbelievable. He is so determined to keep up with Shay - the improvement that he has made in the past week with his breathing is way beyond where I imagined him to be...

The improvements in both of the boys breathing means more changes for us. It is likely that if the boys continue to progress the way that they have been - we will be moving upstairs to the Level Two nursery. We are not there yet...but we are definitely moving in that direction...from there, the boys will need to learn how to regulate their body temperature, learn how to breast feed and be spell free (which usually happens sometime after 35 weeks). Tonight Bev our day nurse told us that she would be moving upstairs with us when the boys are sent up...you cannot imagine what a relief it was to hear this...basically, she is with us until we leave which brings Cris and I so much comfort!

So...things are looking really positive today...we are very aware that we definitely are not home free yet. We anticipate many more more bumps on the ride...and we know not to become overly confident...that being said, what we know at this point in time is that we are blessed with: two beautiful sons, highly qualfied, dedicated and caring nurse practioners looking after our babes 24 hours a day, and an amazing network of supportive family and friends...we could not ask for more....we really couldn't!

So I sign off....with admiration, respect and appreciation to all of you...
liza

Day 48 - August 21, 2007

Today's post will be a bit more brief than usual. Sorry about that. It is already delayed and it is just a consequence of being a bit tired and stressed out.

The boys continue to do well. There are not real changes today besides some increases in weight. Shay is gaining on his brother as they are trying to get them both to 2kg. Ciaran is approx. 4lbs 11ozs and Shay is 4lbs 2ozs and gaining fast. He is getting some extra 'stuff' with his breast milk to try and get him closer to his brother. Their breathing is the same, along with their stool output (yes, this is actually important).

Liza had both boys out today for about 1.5hrs to 2hrs each. This is quite nice and is the expected amount for each baby, each day at this point. Both boys had a standard tests done today (eyes) and so far things are looking OK. At this point, both boys are scoring within the acceptable range which we are pleased with. We continue to learn each day that preemie babies have a number of challenges/hurdles that they must overcome and all of these won't necessarily be overcome prior to us going home. All told though, Ciaran and Shay are doing wonderful and they look great!

Tomorrow will bring another sets of tests and we hope that all remains the same or better. Our two little boys are soo strong that I don't see how anything in this world can stop them. I am so proud to be their dad!

Lastly, I want to remind everyone about the mass that will be held for them on Sunday morning. Father Dave will be graciously holding a mass for the boys this coming Sunday, August 26, 2007 at 8:30am. The mass will be held at Holy Rosary Parish in Milton, ON. If you can make it the boys will appreciate it :)

Thank you,
Cris, Liza, Ciaran and Shay

Day 47 - August 20, 2007

Hi all,

How could today not be a bit of a letdown. We just finished having the most wonderful weekend and our two primary nurses - Bev and Miriam are off for a few days.

The boys are getting bigger and are starting to act very much like babies now. They now know when they cry that they will get their soother and if they spit it out accidentally that they will have it put back in. Unfortunately, the nurses today didn't know our boys as well and hence did not recognize some of their predictable behaviours which resulted in a more difficult day. Days like today reminds us of how lucky we are to have Bev and Miriam with our kids on a regular basis. They really are unbelievable!

As far as the boys are concerned, we again have very little to report today. They are getting bigger and stronger. Shay broke the 4lb mark and Ciaran is slowly getting closer to 5lbs. Ciaran continues to get better with his breathing and is cycling for longer periods than Shay at this point. Shay does require less oxygen help and is mostly in the same air that we all breathe while Ciaran needs a little bit more. Overall, we are extremely happy with their progress. There are still some challenges ahead and a few more ups and downs but we are trying to take each day as it is and so far it is keeping us sane (we'll see how long that lasts).

Liza was not able to hold the boys as much as she would normally be able to. I believe this is power for the course - an unpredictable preemie thing. This iargely accounts for why today was a bit of a letdown. We can only hope that it is better tomorrow. The boys are getting more tests done tomorrow to just make sure that all of their parts are growing and developing normally. Can you say stressful??? We'll be sure to report back when we have some more information.

Thanks for reading and keeping the boys in your thoughts and prayers!
Cris, Liza, Ciaran and Shay

Day 46 - August 19, 2007

Not much to report for today. We arrived at the hospital in the afternoon for probably the first time since the kids were born. This is a combination of being tired and feeling a bit better about everything. Being at the NICU is a surreal experience and its easy to have a less than positive outlook. We have done well keeping things together and always looking for positives even when we don't get the best news. Our kids are getting stronger every day and it shows in the decreased frequency of the alarms going off and other things. They NICU staff are striving to normalize the kids and both Ciaran and Shay are handling every little change beautifully so far.

Today we swapped kids for our kangaroo care. Ciaran was with Liza and Shay was with me. We had them out for 2 hours and today I got to hold both of them. Now this was an unexpected but amazing event!!!!!

Tomorrow is back to work and Liza will be back at the hospital during the day. No doubt she will get to hold both Ciaran and Shay.

Good night and thank you for all of your thoughts and prayers,
Cris, Liza, Ciaran and Shay

Pictures, Pictures, Pictures

Hi folks,

Here are some pictures of our two miracle babies, Ciaran and Shay. There is the odd pic of mom and dad mixed in for the fun of it.

Ciaran in his isolette just before cuddle time.


Our nurse Bev passing Ciaran to me


Ciaran


Ciaran yawning


Guess who??


Mom and Dad with the boys


Mom with the boys (yes, you are allowed to cry now)


Liza and the twins


Shay trying to take Ciaran's feeding tube out (or just saying Hi)


Close up


Ciaran holding onto his brother's hand


Shay in his isolette after meeting Ciaran again!


That's it for today and what a day it was indeed!

Cris, Liza, Ciaran and Shay

Day 45 - August 18 - An Unbelievable Day!

Words truly cannot describe the emotions experienced today when Shay and Ciaran finally had the opportunity to be reacquainted with each other. Cris and I arrived at the hospital at 11:30 this morning so that we could help Bev take the boys temperature and change their diapers...we then had a few visitors come up to take a peek at the boys (Cris' parents, my parents and Neil and Geraldine). None of them could believe how much both boys had changed in only a week. During the visits, Ciaran and Shay were both cycling on low flow which gave everyone a really good opportunity to see what they really look like.

At 2:00, Cris and I were given the opportunity to each hold one of the babies at the same time. We first took Ciaran out and he was held by his Daddy today. It was the first time that Cris had the opportunity to hold Ciaran...he loved every minute of it and so did Ciaran! When Cris was holding Ciaran, I got to hold Shay. I haven't held him for a few days since concerns arose about a potential infection (it was determined that he did not have an infection this morning - so IV is out and all is good!). We held the boys for around 1 1/2 hours. It was amazing to have both of them out at the same time.

At 3:30, Ciaran was moved onto me and for the very first time since they were born Ciaran and Shay were together again! This was definitely a magical moment...one that we will not soon forget and it was all possible because of Bev, our kind and caring nurse. She is so willing to do whatever it takes to make our hopes come to fruition. Ciaran was a bit more awake during the experience and looked intently at Shay. It seemed as if he was waiting for this reunion, in a weird sort of way. Towards the end of the cuddle, he actually reached his hand out to Shay and held his hand...it was too cute...a moment that we will hold in our hearts forever! It appeared that the 'older' brother was taking care of his 'younger' brother. Truly amazing!

Overall, the day was about as great as a day could be. A day that will never be forgotten. It really made me realize that I will be taking not one but two babies home in the future...I so can't wait!!!

Pics will be posted shortly...

Cris, Liza, Ciaran and Shay

Day 44 - August 17, 2007

Today was a better day that I had anticipated it to be! When I got to the hospital, I was quick to take a peak in at Shay to see how he was doing. Upon taking a look, I felt that he looked very much like Shay always did and was behaving similarly as well! I continued to be hopeful that he was infection free. Since his blood transfusion at midnight - he had had only one spell and was appearing stronger and healthier again. I was so thankful for this. It is pretty unbelievable how much a blood transfusion can turn things around!

Ciaran had an amazing day today. They have started cycling him on low flow oxygen and he is handling the transition beautifully! He had only one or two spells today (which is typical for their age). He came out for a two hour cuddle - and again he was a perfect angel...he has made a tremendous amount of progress in the past week and a half - it really is unbelievable! We also got his ultrasound results back which indicated that things were continuing to work their way through - this is good news as we continue to buy time before intervention will most likely be necessary when he will be bigger and stronger.

Ciaran embarrassed me a tad today. I was changing his dirty diaper...and ended up using 10 diapers before he stopped pooing....all over the place. He made me look so hopeless...I am sure that he did it on purpose! I would wipe his bum...wait a minute...put the new diaper underneath the soiled one...pull out the soiled one...and before I could do up the diaper...he would let it go again...my mom was with me today and I must say that we got a good laugh out of the unfortunate situation...I am thinking that I need to buy some stocks from Pampers!

Shay did not come out for a cuddle today as he seemed quite tired and he had an IV line in which looked a bit uncomfortable. I thought that he could use the rest - so we let him sleep most of the day - and he was very content with our decision.

That is about it for today...until tomorrow...
cris, liza, ciaran and shay

Day 43 - August 16, 2007

Sorry to only get to this now. The last few days have been quite busy! I was going to make this a double entry, but thought for the sake of Ciaran and Shay (this will serve as a journal of their early days of life), that I would be consistent and write separate entries for each unique day.
Wednesday night I got home from the hospital around nineish feeling really good about where the boys were at. Both boys had been stable and have been making steady and significant progress in the past week. I decided to call a close friend of mine because I was feeling good about where we were at...I think it was the first time since this journey started that I allowed myself to put my guard down...saying out loud that I thought everything was going to be okay. Up to this point, I refused to say this outloud as I did not want to jinx myself.

Not even an hour later - we had our first call ever from the hospital. It was the Doctor calling about Shay. Shay had had a number of big spells earlier in the day and into the evening where he was forgetting to breathe and was requiring a significant amount of intervention. In the evening, the spells became worse and the doctor felt that Shay might have an infection as these spells are often an indication of such. She called to tell us that they would be proactive and treat the infection with antibiotics until the blood work came back in 48 hours. She also indicated to me that Shay would need another blood transfusion as his hemoglobin was quite low and he was not quite at the age where he could create his own hemoglobin independently.

Needless to say, the phone call scared us to death. I lay frozen on the couch - disappointed at myself for putting my guard down and worried that Shay was sick...sleeping this night was very difficult...we did our best to be positive and think that Shay was infection free...we would know in 48 hours...a long time to wait and agonize!

Day 42 - August 15, 2007

Hi all,
Today was mostly an uneventful day for the boys. The big news today was that the nurse (Melissa) decided to try Ciaran on low-flow today. He did well during a treatment he received and so they went for it. The last time he tried this he only lasted about half an hour but today he did 4 and a half hours!!! It was awesome to see his face and head and everything! Liza was able to hold Shay today for 2 hours and he did pretty good. He had a few 'spells' but those are common for him at this time. Both boys are filling out and getting big. Ciaran was still holding onto the 2kg mark and Shay starting to make progress at over 1650 grams!

Liza took some time for herself today, finally. Her friends Cassandra and Jodi took her out to the spa for a few hours in the afternoon. She looked refreshed and great. It was nice to see that she had taken some time to relax and enjoy.

More tomorrow as we wait for results of a few tests but things overall seem to be going well!

Thanks,
Cris, Liza, Ciaran and Shay

Day 41 - August 14, 2007

Another great day today. Ironically, it feels good that there is not much to report! I held Shay first today as he was quite a squirmy monkey in his isolette. He is starting to develop quite a personality...he has been so alert the past few days. Today during our cuddle - he was awake for nearly 2 hours - it is as if he doesn't want to miss out on anything!

Ciaran was also out for two hours. He was a perfect angel! He has had a really good week. Some of the measurements that we continue to track have finally began to stabalize in the past week. This is great news...his ultrasound is actually tomorrow...this will give us a clearer picture of where things are at.

We now have a primary caregiver for our boys in the evening as well. The nurse (Miriam)adores the boys. She was actually one of the first nurses assigned when we first arrived...so over time, she has become very attached. It is so comforting to have Bev and Miriam dealing with Ciaran and Shay more consistently...I totally trust them and sleep better at night and am calmer during the day when they are around!

Both boys had their first bath tonight! Cris and I had gone out for a birthday dinner with his good friends and came back to the hospital to see Ciaran and Shay wearing clothes for the first time. They both looked so cute, but so funny as they have not worn anything other than a diaper for the past five and a half weeks.

Last but not least, I spoke with Father Dave today. He has kindly offered to say mass on Sunday August 26 at 8:30 am for Ciaran and Shay. So, if any of you are around, we would love to see you!

thanks for checking in!
cris, liza, ciaran and shay

Day 40 - Can you believe it?

Today was an amazing day! I had the opportunity to hold both of my beautiful boys this afternoon for two hours each. I honestly do not think that I can adequately describe how it feels to hold them...I am sure that each of you who are moms know...but before I had the opportunity, I never would have realized what a special gift holding my children would be. I am so very blessed...

I held Ciaran first today. He was wide awake and as alert as can be. He completely makes me melt when he crosses his eyes as he looks up at the ventilating tube that is placed in his nose. He is too cute! Believe it or not, Ciaran joined the 2 kg club today - which is approximately 4 lbs 8 oz. He graduated to newborn diapers yesterday...he is becoming such a big boy! They tried Ciaran on low flow yesterday - he lasted a half hour - I think that we have a week or two before he will be able to handle a cycle of 2 hours. He is going to get ventilator treatments three times a day as of today which is a steroid that helps stregthen the lungs. Shay has been getting this treatment and it appears to have worked...so hopefully, it will work for Ciaran too! Ultrasound day tomorrow - hopefully we will see continued improvements...and we will be updated on the plan of action for him.

Shay had a great day today. He is weighing in at 3 lbs 8 oz. He is totally becoming a ladies man. He had the night nurse holding his hand while on low flow the last two nights in a row. Everytime she would pull her finger away - he would start crying. Yesterday, when Bev put him on low flow during the day, he started crying his eyes out - apparently expecting to get the same treatment again. I told Miriam the night nurse that she better not spoil him too much as he won't be getting bedside care when he comes home unless she comes home with me! He has totally found his voice - you can hear him crying in his isolette now from across the room - I love it! He too was very alert today while out for his visit...

Finally, it was Cris' birthday today. The boys made Cris a beautiful card with thier footprints on it...Cris said it was the best present he has ever gotten...and I could tell by his eyes that he really meant it. This experience has reminded both of us of the essence of simple pleasures...I hope that I never ever forget this valuable life lesson!

That is all to report today! Looking forward to sharing many more positives in the upcoming weeks!

Day 39 - August 12, 2007

Today the boys are 32 weeks gestational age. We likely have a minimum of 6 - 8 weeks to go before either of the boys come home. These days, I am just dying to bring them home. Being at the hospital day in and day out is tiring, draining, and abnormal...I think that everything about this experience could be described as abnormal...that being said, being at the hospital day in and day out has become our reality - and unforuntely the days are becoming more and more normal as we have become accustomed to life in the NICU - a life I would never wish on anyone!

As Ciaran and Shay look more and more like newborns, I feel like I am just beginning to feel more and more like a mom...to be honest, I do not think that it has fully set in, that I am the mother of these two miracles and that in time, it will be me and Cris who will be bringing them home and will be 100% responsible for their care and their well being...it really is a weird feeling...one that is very hard to articulate...

Whatever the case, I know that I am totally in love with Ciaran and Shay and look forward to the amazing life that awaits us!


The past week has been a good one...and we are told that Week 33 and 34 are usually two weeks of great change and growth...so we look forward to the two upcoming weeks as we anticipate meeting further milestones! Shay is being cycled on his ventilators as of today. He is on low flow for 4 hours followed by 8 hours of C Pap. He is dying to get off the C Pap machine! I think he loves the freedom of low flow - his face is free of wiring/breathing tubes/hoses, no more hat, he can turn his head side to side easily...he looked so cute today with only the low flow on...he looked so much like a baby...I realize that this may sound weird...but it is really difficult to get a good idea of what our babies look like with all of the equipment attached to them.


If Shay does well with low flow, we will be able to take Ciaran and Shay out at the same time and allow them to be reaquainted with each other....I am sooo looking forward to this day...I can't wait to see how they react to each other...it will be so special to have them reunited again!


Ciaran continues to remain stable. He is doing well with his breathing as well...as per, he will likely be a week or two behind Shay before he tries low flow...however, this is not guaranteed as he is a pretty determined little guy! The improvements he has made in the past week are unbelievable...hopefully, he will continue to surprise us!


That is all to report for today. Neither babies ended up coming out for cuddles - we wanted Shay to give low flow a fair shot - and thought we wouldn't tucker him out by taking him out for a visit and Ciaran had quite a bit of water retention...so thought he too would benefit from a day of rest.

Night!
cris, liza, ciaran and shay

Day 38 - Saturday August 11, 2007

Today was another day of anticipation but for me it was different. I know that the boys are getting bigger and stronger every day. You can see it when you look at them. Ultimately, growing means that they can come out of their 'condo' as one of the nurses labeled their isolette and that means they can be held EVERY day. This is huge as it means that I will be able to get my first real chance to hold one (or both) of them. Liza has held them multiple times and to see how calm they were is a joy that I could never possibly describe to someone else.

Overall, they have not had huge gains this week but they also haven't had any losses. This gave me the confidence to take my turn holding one of my boys. Liza and I decided that I would hold Shay today and she would hold Ciaran. We would do the opposite tomorrow. Anyway, no need to go into the blow by blow action reply...here I am with my son, Shay Brendan. I am so proud of both boys and I think they are awesome!



A few pics of Ciaran

Here is Ciaran in his isolette.


Liza with Ciaran


Ciaran holding Liza's finger!


Thanks for reading and praying for them!
Cris, Liza, Ciaran and Shay

Day 37 - August 10, 2007

Today was another relatively quiet, but good day.

Shay remains stable. He tried coming out on low flow oxygen today (the last stage of ventilation - little thongs that blow oxygen into his nose). Unfortunately, he is too comfortable when he is visiting with his mom - and he falls into very deep sleeps - and as a result, he forgets to breathe - that little monkey!! So today's cuddle lasted around a half hour of his regular two hour visit as he had too many spells early on in the visit. Either way - it was a good visit and it was nice to have him out! I can't believe how fair both boys are especially Shay - their eyelashes and eyebrows are completely blond...I was expecting two babies with a mop of dark hair....little did I know!

Ciaran also had a good day. Some of the measurements that are being tracked via the ultrasounds have actually decreased by a little bit - this excites us and makes us hopeful. Also, the ultrasound done today showed a significant improvement in the clear up of the debris that we are waiting to dissolve. So good news all around. We will continue to hope and pray that things will work their way out on their own with no intervention or timely intervention which will be when he is closer to term.


That is all for today...another weekend is before us...enjoy it...especially my teaching friends...as you do not have many weekends left :(

cris, liza, ciaran and shay

Day 36 - August 9, 2007

Ciaran and Shay were born five weeks ago today...it is crazy how fast time has gone by! The boys have changed so much in these five weeks! They are getting bigger and heavier every day and they are more and more alert these days!

Today was another special day...I got to hold Ciaran for two hours...when I hold him, he is so calm and quiet. It feels so good having having him out of his isolette! I know that it is really good for him to be getting out and getting held...I believe it is going to make him stronger every day!

Both boys and as a result Mom and Dad had a good day today. The boys continue to do well on their new ventilators...which makes us happy.

It is Cris' birthday on Monday...I am sure that his best present ever will be having the opportunity to hold both of his boys this weekend...I am so excited for him! I will be sure to take some pictures and post them on the blog!

Anyhow, this is short but sweet...which I like...as things are going well! Another sincere thanks for your prayers and positive thoughts...they are working!!!

love to you all!
cris, liza, ciaran and shay

Day 35 - August 8, 2007

Before I left for the hospital this morning, I decided that no matter what happened today, I was going to keep a positive outlook and be strong. During rounds, I became very worried as to whether or not I would be successful with my goal. Shay had just had a few BRATTY's (forgetting to breathe and needing assistance) and there were a number of concerns regarding Ciaran. I listened all of the specialists at the rounds tried to keep it together despite the fact that I was feeling disillusioned. I left the NICU to regain my focus and decided that today was going to be a good day - and a good day it was!!!

Ciaran graduated from the conventional ventilator to the CPAP ventilator today. He has nearly already caught up with Shay - he requires a bit more oxygen but other than that - they are on par when it comes to their breathing. Ciaran had had quite a few spells in the past few days and his breathing monitors were going off constantly - apparently he was just trying to tell us that he was sick and tired of having a tube going down his throat to assist him with his breathing. Once he was put onto the CPAP - he had no other spells for the rest of the day! I am so impressed with our little fighter...he ceases to amaze me!

Shay was out for another cuddle today. He ended up being out for over two hours - it was amazing! He was totally alert...he is getting so big and strong....and he did not have one spell during our visit...it was two phenomenal hours! Looking forward to holding Ciaran tomorrow!!! Being that he is on the CPAP machine means that he too can come out for a cuddle everyday...both of us are so very excited about this!

Finally, the last big news of the day. Bev (the nurse that I have spoken about a number of times because she is unbelievable) offered to be our primary caregiver for the boys during the day. This will mean that we will have a consistent nurse with the boys which is really important especially for monitoring Ciaran. Also, we have one of the kindest, sweetest, most knowledgeable nurses in the unit...we are so very lucky...Bev has seriously been a God send to us....

That is all the news for today! It was a really good day today...hopefully, we can carry this positive progress into tonight and tomorrow!

all the best!
cris, liza, ciaran and shay

Day 34 - Tuesday, August 7, 2007

Hi all,

Today was ultrasound day. Normally this day is Monday but it was bumped a day due to the Civic holiday here in the province of Ontario. Ultrasound days are quite stressful as it gives us more information about Ciaran. He has been stable the last while and we are continuing to see him gain strength. Ultrasounds are done in the morning but for some reason today's ultrasound did not take place until 1:30pm. We found out the results later in the day and the doctor's haven't changed a word they are saying. We continue the wait and see game we have been playing for the last 4+ weeks.

On another note, Liza was able to hold Shay again for an hour. I think this will become a regular occurrence (ie. daily!) as Shay has been making slow progress with his lungs. He only requires a bit of pressure into his lungs to keep them open and it seems the docs and nurses are thinking about getting him off that. It basically paves the way for him to be free of any breathing help. He just needs to remember that he actually needs to breathe cause once in a while he forgets! I must say that I have not had many moments in my life to date that can equal the sight of Liza holding Shay. I am getting anxious to have them home.

OK, back to Ciaran now. We spoke to the night nurse - Sarah, who is wonderful - and she let us know that they have started some preliminary intervention with Ciaran. It is still early but it seems that it had done a bit of work so we are keeping our fingers and toes crossed. We won't know anything for a while but it looks promising. Ciaran continues to be stable and well and that is all the really matters at this point. He is a fighter and we'll have lots of stories to tell him of how he nearly killed us with stress :) We love him and his brother very much!

That is it for now... well, maybe some pictures

Shay out for a cuddle with Liza - look, no ventilator!


Ciaran out for a cuddle!


Good night, keep praying and stayed tuned!

Cris, Liza, Ciaran and Shay

ps - Riley - Your have so much insight for a 10 year old! You are so very wise - holding my boys has been completely magic. I will hold on to your words 'My heart says things will be okay!' - these words mean a lot coming from you - i believe that you are a special girl with a special gift! I can't wait for you to feel the magic when I bring the boys over to your house for a visit!

Day 33 - August 6, 2007

Last night we got a call from Father Dave (for those of you not from Milton - Father Dave is our parish priest from Milton who married Cris and I a year ago). His timing was perfect - after a really hard day at the hospital, an enlightening call was just what the Doctor had ordered. Father Dave has been following Ciaran and Shay's progress and has been saying prayers for our family since he heard of their early delivery. He was calling to see if he could come and visit Ciaran and Shay the following day (Monday) . He also kindly offered to baptize our boys should that be a route we wished to go at this point in time.

Like I said, his timing was absolutely perfect. Finding out only hours before that the possibility of Ciaran requiring surgery was more imminent - Cris and I felt very much that having both boys baptized was very important. So - Ciaran and Shay were baptized today in a very small quiet service at the hospital. It was only Cris, Father Dave, Ciaran, Shay and I - it was a very special service - one that I drew a great deal of strength from. We will have a follow up to their baptism at the Church with the boys, Godparents, baptismal candles, etc once we get the boys home. We so look forward to this day.

Following the baptism, Father Dave took us to lunch at a Toronto favourite - Fran's. We had a great breakfast in good company - we really appreciated Father Dave's enlightened words and his strong belief in our two children! It really capped a beautiful morning. Father Dave let us know that he will be holding a mass for the boys in the coming weeks at Holy Rosary and we will update the blog with the details as we know them if there is interest in joining us for this special mass.

Following breakfast, Cris and I went back to the hospital. Shay had a big afternoon - as he came out for a cuddle only on low flow oxygen (it was his first time trying this!) Low flow is the last stage of breathing intervention where the baby breathes completely on his own - and only has small prongs in his nose sending a bit of oxygen to the lungs to help keep his lungs open. He did amazing - and was able to visit for an hour. This is promising - as it will likely be another step forward for Shay in the upcoming week or two as they try to transition him to this breathing intervention.

It's late and we have an early day tomorrow. Sweet dreams everyone...
cris, liza, ciaran and shay

Day 32 - Sunday August 5, 2007

It was a very emotional day today. I had both boys out for a cuddle. It was the second time that I had the chance to hold Ciaran - I can't wait until the day that I can hold him whenever and for however much time that I want. I am sure that once I get the two of them home - I am never want going to want to put either of them down as there has been so much holding time lost while in the NICU. Ciaran and Shay both came out for two hours - they were both angels while they were out - slept the whole time. When they are out - I hold them in a 'kangaroo style' which is basically skin to skin contact. It is unbelievable how all of the little ones respond to this type of care! I will never again under estimate the power of human touch and hugs!

Cris and I also met with the Specialist from Sick Kids Hospital today. The day that we were hoping would not come - came. The Specialist shared with us that Ciaran will more than likely have to have a shunt put in, in the imminent future to relieve some of the pressure in his head. We were told that this was a possibility four weeks ago when Ciaran's lung collapsed - however, we hoped and prayed that the problem would rectify itself. At this point in time, it looks like intervention will be necessary. The Specialist is trying to buy some time - as the bigger and stronger that Ciaran is when it is time for surgery - the less the risk is for complications. At this point, it is all about timing - as the timing of intervention will be integral for future outcomes. This whole process has been extremely stressful and overwhelming for Cris and I - Father Dave provided a great deal of perspective when he reminded us of the importance of having faith - faith not being that we manipulate the situation to get our optimal outcome - but instead, faith being able to accept and be thankful for our situation and believing that whatever the outcome is what was intended for us.

All of the advice that we gotten from the wise people in our lives is to take one day at a time - this has been extremely difficult for me especially - as naturally, I have had every life scenario run through my head for the boys' future - personalities, schooling, careers, marriage...my goal for the upcoming week is to take one day at a time in an attempt to not be so overwhelmed - we will see how it goes!

Had a very emotional moment with one of the nurses tonight. The nurse I had the moment with is one that I initially judged as I did not find her overly friendly or 'warm'- four weeks later, she is for sure one of my favourite nurses as I know that she truly loves our boys. She broke into tears as I was leaving the hospital tonight telling me that even though she is not "social" - she wanted me to know how much she cared for and loved Ciaran and Shay. It was such a special moment - one that reminded me of the importance of not judging. This nurse is older and not an overly social being - more than likely, she is just very shy - however, that does not mean that she is not a phenomenal human being who is amazing at what she does, caring, loving and sincere. Again perspective...thank you for the reminder!

Anyhow, that is all for now. Thank you for your continued thoughts and prayers. They are providing so much strength for us and the boys! We appreciate all of you more than you will ever know!

cris, liza, ciaran and shay

Day 31 - Saturday August 4, 2007

Today was a great day! Ciaran graduated from the Jet ventilating machine - he is now on the conventional ventilator that resembles more of a normal breathing pattern. He did better than expected with the transition and hence has already had some of the settings readjusted as a result of his success. We are so excited about this step forward!

Ciaran also had the privilege of having his diaper changed by his Daddy today. Little did Cris realize what he was in for! At the beginning of the diaper change, Ciaran had only a wet diaper - as Cris went to freshen him up - Ciaran decided to let it all out - and pooed all over Cris's hands - way too funny!

Cris is feeling more and more comfortable with the boys everyday which is nice to see. He is handling them more and participating in their daily care with more comfort and ease - it is great that he is getting trained so well before the boys get home!

Shay continues to do amazing on his new ventilation system. Everyone in the NICU are very impressed with his success so far. He was out for another cuddle today with me for two hours - it is such an unbelievable feeling getting to hold him...I hope that I never lose sight of this blessing!

Tomorrow will be another exciting day! If Ciaran continues to do well over night on his new breathing system - he will be able to come out for a cuddle tomorrow afternoon - I don't want to get my hopes up too high...although I must say - I am dying for the opportunity to hold him again! I must say that it is almost as if Ciaran knows when Shay is out for a cuddle as it always seems to be about the time that Ciaran's machines start going off - which indicates that intervention is required...it really is quite ironic!

Anyhow, that is all for now! It feels so nice to report so many positives today...we are so thankful for days like today!

Day 30 - Friday August 3, 2007

Ciaran taking a nap

A close up of Shay - (nose taped for SiPap machine)


Shay being held for the first time by his Daddy :)



As you can see from the pictures, today was a pretty special day! Shay continues to do well on the SiPap machine and hence is able to come out for cuddles now everyday....I am soooo excited about that! I think that one of the hardest things about the past month has been not being able to hold our own babies... up to this point, I have only held Ciaran once and Shay twice...Today I got to hold Shay for 2 hours - he was a perfect angel the entire time he was out of the incubator - did not have any spells (forgetting to breathe) which was awesome for him! It was an extremely special day for Cris too...he got to hold one of his sons for the very first time today - initially, he was unsure if he was ready as Shay is so tiny and looks so fragile - but with a little pressure - he took on the challenge and loved it up as you can see from the picture...doesn't he look like a great Dad!

Ciaran continues to make slow but steady progress. There is talk of transitioning him off his big ventilating machine that he was put on a month ago tomorrow - we are hoping that he will soon be able to make the transition as this will be a big step for him. The specialists will be coming in this weekend to see how Ciaran is progressing and we will continue to investigate possible next steps for him.

We have our lovely Bev as our nurse this weekend (she is the Australian nurse that I spoke about earlier in the blog). She truly is an angel - she is so talented at what she does and does an amazing job at allowing us to feel calm, hopeful and grounded.

Hope everyone is away for the long weekend enjoying the beautiful weather!

lots of love,
cris, liza, ciaran and shay

Day 29 - August 3, 2007

Another quiet day today, both kids progressed a bit and hopefully this trend continues into Friday. We did not spend as much time with the kids today as we went off to Hamilton to go and see the newest member of the Sneyd family - Kellan James Sneyd

Kellan is the son of Rory and Tasha, born at a bit over 6lbs and is quite the looker - must get it from his mother :) Here is a picture of him.



That is it for today folks, sorry for the short post but it was a hectic day. Tomorrow we hope that Liza can hold Shay!

Thanks
Cris, Liza, Ciaran and Shay

Day 28 - Wednesday August 1st, 2007

Today we might have had the quietest day yet. The boys are continuing to get stronger. Shay is doing even better today than yesterday with his ventilation as he is having less 'spells' where he needs to be reminded to breathe :) Ciaran has had his ventilation reduced again today and we hope it is the start of him getting off the machines. They are both eating and going potty great.

It would seem that the boys are having a bit of a role reversal as well. Shay is now the feisty one, constantly trying to remove anything on or in his face. Ciaran is still active but a bit calmer now. Quite a difference from yesterday.

Tomorrow will mark the 4 week anniversary of their birth. It is amazing to see how far they have come. We can only pray that they continue to develop so we can bring them home soon. I can't wait!

Good night and God bless all of you for your time and interest!
Cris, Liza, Ciaran and Shay

Here is a pic of Ciaran yawning.


Here is a pic of Shay but it is not as clear. Sometimes it is hard to get a clear shot of them!

Day 27 - Tuesday July 31, 2007

I can't believe that today is the last day of July - nor can I believe that the boys will be four weeks old already on Thursday. Time has flown by! Potentially (I say this with trepidation) , our stay in the hospital is one third over...although ultimately, the boys will determine how long we stay and where we will be staying.

Shay had another good day on his new oxygen machine. He was a bit tuckered out after the first day so the Doctors decided to give him ventolin (like an astmatic child would take) and a steroid three times a day to assist him in strengthening his lungs. Hopefully this will assist him and his lungs on their road to recovery. He is becoming more and more active everyday and his strength astounds me. His latest trick is lifting his head off the pillow to turn into the pillow in an attempt to knock off/escape his CPap machine. I never would have thought that a baby so young would have the strength to turn their head especially with all of the equipment attached to it, nor so smart to attempt to do so. Shay has made tremendous progress in the past two weeks! If he continues, there is a good chance that he will be moved upstairs to the Level Two facility in the next few weeks. They have assured me at Women's College that they will do their very best to keep both babies at the same hospital until they are both ready to be moved to a Level Two hospital as Ciaran will for sure not be ready at the same time as Shay!

Ciaran also had a good day yesterday. He too is becoming extremely active when he is awake. He pulled out his intubation tube again last night - and apparently was attempting to pull it out again tonight. I think that he is trying to tell us that he is sick and tired of having a tube going down his throat to help him breathe (I am sure that it couldn't be comfortable), however, he has not shown us that he is ready to move on to the CPap machine at this point in time. Sometimes, I wish we could keep their hands tied together so they can stop pulling out all of the wires attached to them - I am sure that the nurses are used to it - but, I must say it seriously stresses me out!

We got Ciaran's ultrasound back yesterday - concerns remain and they will continue to monitor him closely until his next ultrasound next Monday. They have called in specialists from Sick Kids Hospital to have a look at Ciaran - as they will be involved should and when intervention is necessary. Funnily enough, today was probably one of my calmest days I have had despite the fact that I did not get the news that I so hoped for! I think that I am calm because I recognize that everything that can be done is being done and basically at this point, what ultimately ends up happening is out of our control. I trust the staff here at the NICU completely - and I know that things are going to work their way out! At this point in time, the staff want to focus on Ciaran's nutritional intake and continue to work on weaning him off his ventilation machine.

Ciaran did get his Pick Line out today which is definitely something to celebrate! As I explained before, this is his IV line and having it taken out reduces his chances of infection. It also allows him to be more mobile with his hands which is not necessarily a good thing if he continues to be so determined in taking out his ventilation tubes!

Anyhow, that is all for today...it was a good day today. The boys continue to do well and for this alone, we are blessed.

cris, liza, ciaran and shay