Saturday, August 28, 2010

Adjusting to our new life

Emelia is home and we are loving every minute of it..  even the 2am minutes!   Wednesday was a big day!  We got to the NICU around 11am and I was still in shock, excited and emotional but kept it in as much as I could! We quickly went through last minute notes, dressed her in her new going home dress, took some pictures and gave lots of hugs!   We are so so grateful for the NICU and the nurses at the Brigham.  Marcy and her other nurses just loved her and kept her happy and healthy and we couldn't thank them enough!   We will miss them but will visit!!    The ride home wasn't too bad, Larry drove the best he ever has for me, slow and cautious, and I sat in the back watching her.  She didn't move, just slept the entire ride home.   Once home, a quick diaper change and feeding and then time to sleep again.   She adjusted very well.    That evening we had a little welcome home Emelia dinner party with the grandparents, balloons, flowers, cake and champagne!!  (first glass in 10 months!! )  Emelia even woke up for everyone with eyes wide open and all "smiles"  -could be gas :)    
     One of the best moments was a little later.. She had spit milk up thru her nose and was crying and I wanted Larry to help me clean her out but he was outside.. maybe too much was going on for her.    So I took her upstairs and walked around, holding her and talking to her, showing Emelia her new bedrooms.  And she stopped crying, and just stared at me, peaceful.  This was it, it is real, she is here.  I was a mom, her mom, and she knew it and she was comforted.  And together we just stared at each other knowing life would be great together!   I am so in love with her! 
    The first night was interesting.  It's so quiet at home compared to the NICU and boy does she make some noises when she sleeps!  Grunts and squirms...  I laid in bed and listened to her all night and every 5 minutes or so got up, looked in at her sleeping in her cradle, made sure she didn't spit up, was still breathing and then laid down again.  Repeat.  
At 1 am I took her downstairs so Larry could sleep and fed her.   This is my favorite time with her.  Just Emelia and me.  On my couch, no one around.  Feeding her as she looks up at me with those big eyes, and then holding her on my chest until she falls back to sleep.  
Thursday was a great day.  She met Grandpa Byrne who was in awe of her!   And she met her doctor who said she was doing great.  Now 4lbs 13 ounces!!   She also answered some questions and made us comfortable with the big change!   Then the metrowest news paper came and did a follow up article of us and Emelia being home (see link below).  He tried to get pics of her eyes open but she was just too sleepy!  And then later we took her in the stroller for a walk up and down the street!  She slept through it all but I know she enjoyed it!  
Friday was just Emelia and I most of the day, feeding and sleeping. She turned 1 month friday already!  She eats a great amount and can give us some strong burps! When Daddy comes home he takes her in his arms for hours!   Last night was a little easier for me to relax while she slept but she was pretty fussy after eating at midnight.  We will get there with the feedings.   We are just so happy and excited to have her home and inour lives!!

More pics to come soon.. I promise! 

Wednesday, August 25, 2010

The big day has come!!

Now I can't sleep from excitement!  Just when it was getting annoying and old..  I was told Emelia could come home!  We were told this weekend it would be soon.. possible this week.  Then told on Monday it would be Wednesday but we still didn't want to get our hopes up.  Then yesterday we went over everything and I really believe today is it!!!   I am so happy.  Finally!!  Of course I'm a bit nervous and like every mom I will stare at her all night but I am so excited!  I think Larry is too since he didn't sleep much!   I had a great day with Emelia yesterday.  She really has changed and grown so much stronger and mature in her feedings.   To all you NICU moms...   there is a happy take home baby day coming soon! 
Of course I will write more when I have time!  and I know I still have more pics to post!   Oh and I feel great from chemo dose 2- my hair hasn't fallen out yet.. its really a thick peach fuzz these days...    and I haven't had any side effects from the taxol/herceptin that I can tell  yet. 

One more thing.. I met another young girl with breast cancer yesterday who is 26 weeks pregnant.  She has her mastectomy today and there is a chance she will have to deliver her baby.  Please keep her and her baby in your thoughts today. 

Sunday, August 22, 2010

The NICU emotional roller coaster- stong momma has the baby blues!

ok i started this on Friday and then googled kicked me out and lost half of my post..  so i will continue now...

So today is Emelia's 3 weeks!  So So very hard to believe it has already been 3 weeks since I finally met my princess but even more so -  so much harder to believe she is still not home.  I guess this post is for any other mother that has to deal with the NICU experience... it is its own roller coaster of emotions!
   The very first few days I was just so happy to have her..  she was alive and looked so normal. She was delivered from me and I could hold her finally!    No matter what people had told me, all while going thru the chemo with her I was so scared it would either make her so unhealthy when born, or so skinny or even not look like a baby girl.  So the first couple of days I was just so excited to see her and show her to everyone..  I was on this happy adrenaline rush.   Then after the weekend, the normal fears of the NICU kicked in.  I actually had worked in a NICU back when I was working at UMass so I knew what it would look like.. I was familiar with small babies, tubes connected to them and them being in an isolette box and monitors all around.  It's still different when your own is in there.  At first you stare at the monitors or jump whenever an alarm goes off, and look for the closest nurse.  You have this constant fear that this peaceful sleeping baby is just going to have so major issue and everything will get worse.  Even if your baby is doing well you hear other babies' alarms go off or see them in a worse condition and you worry that will happen to yours.   I was scared, I was excited to have her but I still didn't grasp that she was mine yet.. I think i wasn't ready to accept it because I was afraid something could still happen. 
 I think about 4 or 5 days into it I finally had my breakdown and just cried.  They warned us that all moms have the baby blues at some point after delivery and yes I had them..  or have them I should say...  The best thing that helped was just spending alone time with her, holding her, feeling and seeing her comfortable on me.   It took a few days, and many talks with nurses, doctors and social worker, to understand she is doing great and is strong and will be ok.  And that what I am feeling is normal.   And then it was time for me to go home but not Emelia.  I actually did better than I thought I would with this first night, probably because I had talked so much out with counselor and nurses.  I knew she was in the best hands possible, I knew I could go see her whenever I wanted, even 4 am, and stay as long as I wanted, and I knew she needed to get stronger so we could take her home.  And my parents and grandma came over and made dinner so that was a great distraction. But leaving her still sucked.  And still sucks every night.   Of course when home I tried to get as much done as I can, try to stay busy or try to rest.  At first I called at night and in the morning to check on her.  Now I just know she had a great night and I will see her soon. 
    After adjusting to having Emelia and then having Emelia in the NICU and being ok... we adjusted to our new daily schedule.   Both of us want to learn as much as we can and do as much as we can with her now so we can be comfortable when she is home.  Emelia eats every 3 hours.  During this time is when her diaper is changed and temp is taken and usually she is somewhat awake and alert.  We typically are there for 2 feedings and the 3 hours in between at least every day..  We get there at 1:30 in the afternoon for her 2pm feed,  hold or cuddle her from 3-5 (we trade off on this altho I think Larry hogs her!) and then feed her for her 5pm feed and head home around 7.   Larry is amazing at this.  He has jumped right in and done everything and asked so many helpful questions.  Our nurse is also so wonderful, all of them are.  Showing us what to do once but then having us feed her, having us watch Emelia's expressions, colors in her face, how to handle if she chokes or is struggling to take a deep breath. Larry is more confident at this.. and maybe more confident in Emelia's ability to recover on her own but I am getting there.. We look less at the monitors and more at her face. 
   The big thing that is hard to deal with is time..  a typical mom has 24 hours a day to be with their newborn.  We usually only have 6 hrs with her.   Its probably the hardest thing to accept that i am not with her when I want to be or all the time.   And then when i am with her and larry is holding her for 2 hours and all i can do is sit there and watch them.. i feel like i am wasting my time and should be doing laundry or baby room stuff.. or even editing pics.  and then i feel guilty for thinking that.    and then when family come to visit you feel bad that they can only spend 5 to 20 mins with her .. but when I only have 2 hours to hold her.. its so hard to give her up for an hour for everyone else too.      I actually have learned to really enjoy these hours with just Emelia and Larry.. no computers, no facebook..  Larry and I have just sat and talked.. mostly about her, but also about work and us and how we will deal at home.  Or we discuss the preemie book Larry bought.  Of course he bought a book- what kind of engineer would he be if he couldn't research something fully!  I still wish I could be with her at my home all day and night reading and figuring thing out!
   3 weeks is a long time..  even if it has gone by fast... it gets real old fast.   Sometimes i feel like she isn't my baby yet.. just someone I am visiting every day..  it's definitely hard.     I want her home so much.   Sometimes you think this NICU thing will never end.   Esp when you see some "big" kids still in the NICU.  Emelia is so small but she is so strong and such a fighter!    She has really impressed me with her progress.  Bottle feeding -  no more feeding tube!   in her open crib!  and gaining weight everyday!   I know the day will happen soon.   And even when i am scared to have her home without nurses and monitors.. I am ready. 

Today we were told she is doing great!  And to get ready for her to come home soon.   We try not to get our hopes up yet...   but we are ready whenever she is!

Thanks to everyone for the cards and gifts.. thank you cards will come eventually when the birth announcements are done.. but please  know we are so grateful for your love!

As for me..  the first chemo on monday wasn't bad at all.. just long and i was tired monday night.. tomorrow is dose 2!  


Monday, August 16, 2010

Emelia's two weeks in the Nicu... the facts

Emelia is doing great!  It still amazes me how someone so little and early can be so perfect..  and come from inside me.    Amazing too how this is what is inside Sarah right now!!!  I can not wait to see her baby!! As much as I want her to deliver soon..  I hope her baby waits until at least 38 weeks!!  

As for Emelia she was born at 3 lbs 9 ounces on Friday July 30th.. making her 2 weeks and 3 days old today!  She has been breathing on her own since that day, its getting really good at regulating her temperature, no heart issues or long apneas or slow heart rates.   And she poops!  A lot! Dad is a great diaper changer!   

She is really learning how to drink from the bottle!  Which is all we need for her to come home!  Right now she gets fed every 3 hours, taking every other from the bottle usually and then sleeps thru the next one. And after the initial weight loss.. she is now gaining daily..  for all you engineers - check out the graph for details!!  haha
We are hopeful that she will be in home in 2 weeks!  Besides that.. she loves to be cuddled!  Really by anyone but i think she enjoys her Kangaroo time with daddy the most!  She sleeps so well on him!

The NICU is just so wonderful!  Especially her nurses!  They love her and cuddle with her and take good care of her!  I have no worries she is in great hands!   They teach us so much too.  I feel more prepared each day and less scared.

I have so many pics that iI spend time editing..  but for now I have uploaded her first week on facebook and snapfish.  The link to photos is on the RIGHT TOP!!! 


1s Annual Run, Walk or Crawl results!!

On August 7th we had a very successful 1st event!!   And yes I was there to join in the fun and cause!  Emelia had to stay in the NICU but i'm sure she wanted to be there instead!

We had about 200 people!  about 162 racers and many volunteers and family supporting them!   Before the race there was music and trainers helping people warm up!   Promise to Me was there, as well as a young girl selling hope necklaces and photographers -  pictures will be on website soon!!    Our winner, a Hologic employee,  came in under 20 mins!   It was great weather and a wonderful time by everyone! 

And the best news!!!  We raised over $16,738!!!!   Friday Amy and I went to Dana-Farber to deliver the money and they were as pleased and excited as we were!!   Great job and many thanks to everyone who come out to support us or donated!! 


updates updates updates!! and more chemo

First I apologize for my delay in writing!!  I'm just trying to get YOU ready for when Emelia comes home and I really have no time to write!   jk.   But really even tho she is in the NICU it seems I am still really busy!  Between driving to Boston and spending time with her..  to coming home and trying to wash her blankets and tiny clothes and somewhat organize her things!  So I  am going to post a few blog post today about everything that has happened in the last 2+ weeks!

As for me- not as exciting as Emmy -  but I am feeling great and really enjoyed a few weeks off from cancer!   Last week I met with oncologist and they were excited to let me know I could start chemo earlier!  Yippee!    

So here I am!  Today in Boston..getting my first does of the strong chemo.  Taxol and Herceptin.  So far DF is running very behind with me!!  About an hour and half late!  But things are going now.   They say the effects are less then my AC chemo.   We'll see!  Larry is splitting his time between me and Emmy, running between the buildings! 

So now i have some downtime!  So enjoy the post!

Friday, August 6, 2010


Emelia is doing great!  It's hard to leave her at night but I know she is getting stronger each day and will be home soon!  And we fed her a bottle yesterday and today!! I love that her nurses push her!!  And she is ready for the challenge!   I think she wants to go to the race tomorrow! 

Race day is here tomorrow!!  THIS IS WHY WE DO THIS!!  So no parent has to see their child suffer.   No child has to lose their parent too soon.   So no friend has to watch another friend in pain.  

Exciting Race day tomorrow to raise money for Dana-Farber and all cancer research!!  We will NOT lay down to cancer! 


Donate today!!

Tuesday, August 3, 2010

You'll be blessed

I apologize for not writing yet -  promise I have all the details in my head!  I have just been busy with Emelia and when I'm not with her I stare at her pictures!  She is doing great! Eating, pooping, sleeping and making funny faces! The nurses in the NICU are wonderful, telling us everything and teaching us so much more!  Keeping her and her parents so happy! We had a busy 3 days showing her off to family and friends..  she loves making faces for them!  And in between Larry and I enjoy our alone time with her.   He is so in love with her I melt every time I see him smile and change a diaper!   He even spoiled her and bought her new clothes!  Daddy's girl at day 1!  More details to come once I'm home! 

Thank you to everyone for all the well wishes and blessings!!!   She really is loved and blessed so much!!   This song is to thank you!! I added some lyrics to this beautiful song from Elton John so you can cry and share in my hormone craziness!  youtube it to make it more emotional!  :)
love you and thank you- becky, larry and emelia
Blessed - Elton John
Hey you, you're a child in my head
You haven't walked yet
Your first words have yet to be said
But I swear you'll be blessed

I know you're still just a dream
your eyes might be green
Or the bluest that I've ever seen
Anyway you'll be blessed

And you, you'll be blessed
You'll have the best
I promise you that

I'll pick a star from the sky
Pull your name from a hat
I promise you that, promise you that, promise you that

You'll be blessed

I need you before I'm too old
To have and to hold
To walk with you and watch you grow

And know that you're blessed

And you, you'll be blessed
You'll have the best
I promise you that

I'll pick a star from the sky
Pull your name from a hat
I promise you that, promise you that, promise you that

You'll be blessed