October 10 - Day 98

We had hoped to get a post up for Thanksgiving...however, did not get a chance. So...first and foremost, we hope everyone had a wonderful Thanksgiving and long weekend! This was a very special Thanksgiving as some of you may have predicted as Cris and I reflected on how much we have to be thankful for...the list is so extensive. We have continually affirmed how thankful we are for our family and friends over the course of our journey. I hate to admit, that we never truly realized how supportive and integral both our family and friends are in our lives. Many people here at the hospital who have shared the journey with us have commented on the amazing network of people we have in our lives.

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

3 comments:

Anonymous said...

Liza,
I couldn't be happier for you and your family. In years to come, these past few months will seem like a blur--and when you get your boys home, you won't have time to think about it!!

Congratulations to ALL of you, try to relax a little (you deserve it) and above all, enjoy this time with your boys!!

Cindy DiBattista

Heather Brown said...

It's great to see the boys without their feeding tubes! Looking forward to meeting them soon. Hang in there....you're almost home!

Heather

Anonymous said...

Happy Thanksgiving! It's great that the boys are doing so well... We can't wait for them to meet Daniella! I can't believe how big they have gotten! They look so cute in their little outfits!

Helen, Nick, and Daniella