Since the last posting, we have been home on two occasions with Ciaran. To be honest, I was trying my best to hold out so that I did not have to go home until both Ciaran and Shay could come home together. What I have learnt from this whole experience is that everything does not always going according to plan. An important lesson, and a very difficult lesson to swallow!
So we went home on Tuesday night because Ciaran had his first pediatrician appointment on Wednesday. We had a good night at home and a very hectic Wednesday morning trying to get ourselves and Ciaran up and ready for his 9:30 appointment. The appointment went extremely well. We were so impressed with the pediatrian that we were referred to - Dr. McGregor. He spent an hour with us going through Ciaran's story - he listened - and I mean really listened, asked questions, and just showed a genuine interest in Ciaran's care. This was such a relief for Cris and I!
We returned to the hospital Wednesday and stayed here til Saturday night. On Saturday, we headed home again to celebrate Jodi's 30th birthday with her. It took us way more time than anticipated to get ourselves organized and hence we missed the surprise by a few hours. It was worth the stress however- as the party was fantastic - had a chance to meet all of Jodi's family and friends - of course, really good people!
In the meantime, Shay has been working really hard to get himself home. He has been spell free now for 7 days...go Shay! It is like everything just clicked for him all of a sudden. I wonder if he is missing his brother...intuitively, I believe that this may be the case. At the moment, Shay is just transitioning to sleeping on his back which is the last transition he needs to overcome to get his ticket home. If we can continue to be spell free by Friday, our little family will be packing the car and heading home which Cris can't wait for.
That is all for now...my little prince has awoken...and I must say he is quite demanding. Both boys wake up and immediately feel that it is their time to be fed...the two of them have quite some good lungs on them!
We look forward to sharing more good news in the next little while.
love to all,
cris, liza, ciaran and shay
Liza with both boys - that's a whole lot of baby!
The boys knocking heads already!
The boys again
The boys together in a crib
Checking each other out
The boys just chilling out
Shay's butt again but covered with a cow, how cute!
Ciaran with dad :)
Life continues to be busy especially since we are now fully responsible for Ciaran's care which we are loving! Ciaran has done well with his latest transition. He has been awake a little more than usual and has been demanding a tonne of 'holding time'...I would say that he is trying to get caught up for lost time.
Just a brief update as to what has happened in the last couple of days. As you know, Ciaran was discharged Thursday night. On Friday, I took advantage of the beautiful weather and got out for two walks - first with Geraldine and my nephew Eamonn and then later we made arrangements to meet Fab, Camilla, Conor, Orla and Ciara for dinner at Pogue Mahones (one of our two locals). My first outing with Geraldine was a bit stressful - I had Ciaran in the Baby Bjorn and was worried about his breathing - likely a natural reaction from all that we have seen and been through in the NICU. I was a bit more relaxed later on in the evening as this time I decided to put Ciaran in the hospital stoller. I felt much more confident being able to see him 24-7 - AND I thought I would never be an over protective mother :) Sunday was another beautiful day - so we decided to go out and walk around Queen's Park. It felt so amazing to be outside - we have been spoiled with the weather.
Shay refused to be outdone by his brother, so he too found himself in a stroller and outside for a walk on Friday. We have a second primary nurse now for the days that Bev is off named Marsha. She is very cute and caring. She decided on Friday to set Shay up on a portable monitor so that he could have his first breath of fresh air the sma e day as Ciaran. He loved being outside - he was very alert and calm. The following day, Marsha had the Doctor write up an order (presciption) that would allow Shay to come on more walks around the hospital on a monitor. So on Saturday, he spent an hour or so in our room with us on the monitor again. It was nice!
Shay continues to get stronger everyday likely a result of all the exercises he is exposed to through every day. His spells are much more infrequent - maybe one every 3-4 days at this point in time all of which are due to his reflux (stomach contents being released from the stomach but not quite getting spat up. He needs to go a total of 7-10 days spell free before he is able to come home. Even though I am dying to get him home, I realize the importance of time with regards to continuing to mature - and hence I will do my best to remain patient and positive.
The boys hung out on Sunday in the Shay's crib. We got a bunch of pictures that Cris will be posting tonight. We also put them in the stroller together for one shot - it was too funny. Shay, being Shay was not interested in the least to become reaquainted with his brother. Instead, he attempted a number of times to latch on to Ciaran's forehead in an attempt to get milk...it was too funny!
Anyhow, that is all for now. I will be better at posting in the next few weeks (likely briefer posts) as I need to keep my Mom and Dad updated on the boys progress while they are on a much deserved vacation to Australia and New Zealand - they need to get all rested up before they come home and become permanent fixtures at our house in Oakville :)
Take care everyone! Hopefully Cris will have some more recent pictures up of the boys in the next few hours.
lots of love,
cris, liza, ciaran and shay
So...here I sit with my little miracle, my determined fighter, my sweet, sweet Ciaran. I again am provided with an opportunity to realize that I am a mom, that my boys are really coming home with me - this is something that I never fully accepted in the past three months - likely as a coping mechanism to deal with my fear.
I feel an overwhelming amount of thanks tonight - I am so thankful for life. Never again will I forget how very precious life is and how important it is to honour this fact day in and day out. I am so thankful that I finally have the opportunity to be a mother - this is something that I have longed for, for as long as I remember. I am thankful for Cris - he truly as been my rock throughout this journey - having children has really made me aware of my vunerabilites and being vunerable is a scary thing! Thank you to all of you who have joined us on this journey - we are sooo close to the end and our appreciation and gratitude for our amazing family and friends will never be forgotten.
My boy awaits me...I must go and take advantage of my cuddles and baby kisses...
night everyone and thanks again!
While I was at home, I came across a number of pictures of Ciaran and Shay in their early days of life. I found myself totally taken aback by how small and fragile they both were in the beginning. To be honest, I found looking at the pictures a little bit difficult. I was reminded of not only how fragile my babies were, but too, how fragile I was. I was also reminded that the boys have come such a long way since then, and I have put many of the early days behind me. It is important to remember that I am not bringing home 2 pound preemies - instead, I am bringing home 10 pounders which is how I want to remember them.
So, we have big news for this week...long awaited news. Ciaran is being discharged from the hospital on Friday of this week. He is ready to go now, however, the staff have agreed to keep him until Friday as he has an eye exam Thursday afternoon. Ciaran will be rooming in with Cris and I in the parent room until Shay is ready to go. Looking back on his journey, it blows my mind of where he's been and where he is at now. All along, he has shown unbelievable strength and determination. He truly is a miracle who has exemplified the power of the human will and spirit - a lesson for all of us.
Shay continues to struggle with his reflux. His hernia and his struggles with bowel movements compound the situation. They tell us that only time can rectify the situation. The sphincter muscle needs to further develop (it lacks some muscle tone since there was a feeding tube obstructing it for the first 3 months of his life) and he needs to develop his abs which will help him become more regular. Neither of us want Shay to come home until he is good and ready, although I must admit, my ideal situation would be that they both come home at the same time. No one knows how long it will take before Shay is ready to go - we will just have to continue to wait patiently, be positive and be thankful for our two little miracles. I keep reminding myself that another few weeks or month is nothing compared to the rest of our lives spent with Ciaran and Shay.
That is all for now. I will do my best to continue to keep you posted. As always - thanks for your positive thoughts and prayers - Ciaran's discharge from the hospital is also a testament to the power of these thoughts and prayers.
lots of love,
cris, liza, ciaran and shay
The staff at Women's Colleage have been unbelievable...and I mean all staff...from the Chief of the Neonatal Unit, to all of the doctors, fellows, nurse practioners, charge nurses, nurses, 'dairy queens', to the cleaners...everyone has taken a sincere interest in our boys. In a weird sort of way, the hospital has begun to feel a little like home...as we have developed life long friendships and forever supporters. Many of the staff have been surprised at how well Ciaran and Shay are doing despite their rough start - I truly believe that a significant amount of the progress that they have made is a result of the caring, loving and dedicated staff.
Thanksgiving had always been was my target date for getting the boys home - I had the dates mixed up in my head however, as I had assumed that Thankgiving weekend was next weekend. Hence, I was a bit disappointed that we were not able to have Shay and Ciaran with us to celebrate this special holiday. I know in my heart, that we do not have much longer to go, however, the days that we still need to put in, are integral to their development.
Shay has had a few spells in the last few days which is going to hold us back a little bit as both boys need to be spell free for 7 days before they are able to come home. To be honest, I would prefer if we waited even longer to ensure that we feel confident bringing our boys home. The spells continue to be a result of reflux - which he is supposed to grow out of. Today they changed his medication dosage as he was only receiving a preemie dose and was in need of a pediatric dose as a result of his age and his size. We pray that this is what it will take to get Shay back on track.
Both boys have their feeding tubes out which you can see in the pictures. This was worthy of a big celebration. It is so nice to have their faces free of tubes and tape!! This means that both boys are feeding independently by demand. They are doing absolutely wonderful with this next step. The are becoming better and better with their pacing and hence having fewer and fewer spells as a result of gulping too much milk and forgetting to breathe. We have moved to a schedule that involves half breast feeding and half feeding breast milk via bottles. Last week, I found that I was literally feeding them around the clock and neither of the boys were being efficient...it looks like we have made a good choice as today the boys were much more efficient and I was able to get a welcome rest...
Anyhow, that is where we are at as of now. The boys are huge!!! They are starting to look as if they are too big for their cots. Shay weighed in today at 8 pounds 5 ounces...and Ciaran will be weighed later tonight...but if I was a betting woman...I would predict that he will be 9 pounds 4 oz. I am still staying at the hospital...it has been three and a half weeks now...I don't think that I have much longer to go...perhaps two more weeks...we shall wait and see!
A sincere thank you again for your positive thoughts and prayers. They have truly meant the world to us.
Love you all,
Cris, Liza, Ciaran and Shay
The boys will be term this week, meaning that their actual birthday was supposed to be October 6th (not July 5th) and we know in our hearts that this is a wonderful achievement for them. They started out so little and very sick. Looking back on it I don't think we actually realized just how sick they were and as we look around us at the hospital we see a continuous stream of little babies born much too early and we know we have been blessed and lucky.
The boys are continuing their march home. Wednesday and Sunday are bath and weigh days. So yesterday both boys were weighed. Ciaran is now 8lbs 11ozs and Shay is 8lbs 2ozs! It is hard to describe how big this is as we know that a majority of babies are born at or get to these weights within weeks of life but we see preemies around us going home at 5 or 6lbs and comparatively speaking our babies are giants! I think this is a testament to just how much these little miracles are loved but everyone around them. Liza has done an amazing job of being by their side for what seems to be 24 hours a day and the amazing prayers and thoughts that have propelled these two through to this point have been wonderful. We could never thank you all enough. We are in the home stretch, both boys are getting stronger and better at feeding. This is the last step, the one that seemingly has taken the longest and it is tough to look at what appears to be fully healthy and normal babies and know that they have a bit of maturing to do. They are almost there.
Thanks again everyone - we are not out of the woods yet but we are close.
Cris, Liza, Ciaran and Shay