Day of Life 51

~ Adjusted Gestational Age 32 Weeks

I hope this post finds everyone happy and healthy in their own lives.  It is very easy to get caught up in NICU and forget that life continues on the outside.  No matter what happens to us or the girls, sands continue to fall through the hourglass and days continue to pass...yet somehow I keep forgetting this.  I apologize. 

Since our last update the girls had a very special visitor ~ my Gram.  My saintly mother brought her up to Rochester for a few days to meet her great-granddaughters.  We had a true four generation moment:  Carol Jean (great grandmother), Jamie Ann (grandmother), me (mother) and the girls.  It was a truly special time and one I hope to be repeated only at home or in Watertown. 

Unfortunately that is an event very far out in the future. 

 

On Monday the girls were 7 weeks old!  It is so hard to believe that they have graced our world for seven weeks, especially when the truth is they should still be growing inside of me.  I should be feeling their kicks in my womb instead of watching them kick out perfect little legs when they don't want a diaper to be put on...I should be imagining their faces as they flip and turn inside of me instead of seeing tears pool in their eyes when they cry...I should...truth is, I should be doing a lot of things, but that is not our reality. 

 

Our reality is the girls are here and we are simply trying to make the best of hand we've been dealt.  We are simply trying to stay strong for our daughters.  At 32 weeks gestation the girls should be the size of a squash

Here is a quick update on each of the girls for you:

 

Cecilia Hope

This little girl is trying a miracle.  She is my "Roll with the Punches" girl.  Don't get me wrong, she won't let anyone walk all over her, but in light of everything she's been through, she still maintains the sweetest disposition. 

Since I last wrote, unfortunately, Cecilia lost the tip of her left pinky.  Right now, unless you know it is gone, it is incredibly difficult to identify.  Nurses and doctors keep trying to say she won't even notice it ~ however, I have to point out that she has two identical sisters who still have the tips of their pinkies so I doubt this will go unnoticed for very long.  Despite this, we feel very blessed.

Cecilia currently weighs 800 grams!  We are so proud of her weight gain ~ remember she weighed only 520 grams at birth.  She has finally started her trophic feedings and will hopefully continue to gain weight in the coming days/weeks.  She is 29 cm long.

Her lungs are doing great and the hope is to wean her CPAP settings in the morning to a Peep of 6.  Cecilia had an eye exam today and the doctor still could not see a whole lot.  He will recheck her next week.

 

 

Isabelle Grace

Oh Izzy G!  Isabelle is my monster baby weighing in at 1070 grams and measuring 35 cm in length.  Trust me, I know this is still incredibly tiny compared to a full term baby, however my baby girl has gained almost a pound since birth and we are so proud!

 

Isabelle has discovered her voice and it is the sweetest sound in the world.  She likes to let us know when she is too hot as she gets incredibly angry (like father, like daughter maybe??). 

She is recovering very well from her PDA surgery and is making progress on her CPAP settings.  We are hoping to wean her to a Peep of 8 tomorrow.  Isabelle also had an eye exam today and the doctor was not overly concerned.  He will follow up in one week, choosing to take a proactive stance with the girls rather than a reactive one. 

 

Zoe Elizabeth

Zoe, Zoe, Zoe...This one is my drama queen (and I love her for it).  Zoe definitely has a voice and is not afraid to use it.  One day she will love tummy time and the next day she will not let you even consider leaving her on her tummy!  It is hilarious.  For example, we were kangaroo-ing and she no longer wanted to be on her side so she decided to take it upon herself to cry and wiggle until she positioned herself on her back!!  Talk about one strong baby!!

Zoe is slowly but surely gaining weight despite being on full feeds for the longest.  Her current weight is 980 grams (we are so close to a kilo party for her!!) with a length of 33.5 cm. 

Zoe also had an eye exam today but unfortunately hers was not as successful as her sisters'.  The doctor saw some concerning images and has pre-warned us that intervention may be necessary.  Intervention would entail Zoe taking a field trip (leaving the unit), being re-intubated, put to sleep and enduring a three hour laser surgery which would hinder her peripheral vision in the future (among other potential risks).  However, if she continues to progress towards the danger zone (she's one third of the way there), she risks losing all vision in one or both of her eyes. 

 

Not exactly the news I was hoping for but we had been warned that the girls were at extremely high risk for Retinopathy of Prematurity (ROP).  ROP is a disease that affects the retina of the eye. ROP affects the blood vessels on the retina in a preemie's eyes, and is one of the leading causes of childhood blindness.

 

Please keep your Zoe in your prayers.  I am trying to convince her that being our only child to not endure a surgery is a good thing...however, at this point I don't think she believes me...

GUS

Don't think I forgot about dear Gus.  Gus will be 4 on Monday (August 26).

 

I can hardly believe he has graced our lives for four years.  We found GUS the night I was sworn into the bar (a Monday) and he came home with us that same Saturday at a little less than 6 weeks of age.  I miss him incredibly as I haven't seen him since I went to work on morning of June 20...I hope he remembers me...

 

 

Thank you to everyone who holds our girls in your hearts.  We hope you know how much it means to us to have your love and support ~ Thank you.

 

Love,

 

Adam & daneille