The Luck of a Skibness

Happy St. Patrick's Day

Isabelle & Zoe in cute outfits from their "greatest" Aunt Kathi

March 17, 2014 - The girls' first St. Patrick's Day.  Another holiday spent with our family apart.  But rather than be upset that we cannot be together, we chose to be grateful that we are all still here. 

 Cecilia Time

Playing with Daddy

Two good friends of mine, Wendy Sue and Sarah, gave up their Saturday so Adam and I could visit with Cecilia - just Cecilia.  It was amazing to see her!  For the first time in a very long time Cecilia looked healthy.  Mind you, she still cannot come home, but she finally looked healthy. 

Big Smiles

We walked into her hospital room and she was playing on a play mat.  We said "Good Morning Cecilia" and she turned to find us, giving us a huge smile.  I've said it before, and I will say it again, it is amazing that despite everything Cecilia has been through, that she is still a happy baby.  No matter what life seems to throw at her, Cecilia smiles and keeps going.  I have learned so much from her and I hope one day to be the kind of mother she deserves. 

More Complications

The last month has delivered more complications for our little peanut.  In anticipation of trying to remove the need for supplemental oxygen from Cecilia, the doctors decided to run a multitude of tests.

The first series of tests were to finally confirm or deny a diagnosis of cystic fibrosis.  Cecilia's newborn screens kept coming back questionable for cystic fibrosis, mostly due to her prior need for numerous blood transfusions.  The doctors performed a sweat test on Cecilia while Adam and I held our breath.  Thankfully the sweat test was negative - Cecilia does not have cystic fibrosis.

Next, the doctors ran an ECHO on her heart.  The ECHO revealed Cecilia has pulmonary hypertension - basically elevated blood pressure in the vessels of her heart.  We already knew Cecilia had bronchopulmonary dysplasia - BPD for short -sometimes called chronic lung disease. Although most infants fully recover from BPD and have few long-term health problems as a result, BPD can be a serious condition requiring intensive medical care.  A child is not born with BPD. It is something that develops as a consequence of prematurity and progressive lung inflammation.


The doctors are fairly certain that Cecilia's pulmonary hypertension is a side effect of her BPD rather than being a separate medical issue on its own.  This is actually good news.  The hope is that once Cecilia's BPD resolves (which it could do within her first two years of life), her pulmonary hypertension will also resolve.

Cecilia will undergo a repeat ECHO this week.

The immediate negative of her condition, she was not allowed to come off of her supplemental oxygen.  Instead, her oxygen requirements were increased and more tests were ordered.

Cecilia underwent multiple "sleep studies" to evaluate her oxygenation levels as various amounts of supplemental oxygen are administered.  The sleep study showed Cecilia has hypopnea.  She has episodes of overly shallow breathing, but thankfully she does not stop breathing completely.  Another reason to keep Cecilia on supplemental oxygen, though if you ask Cecilia, she would completely disagree.  Again, this is a condition in which Cecilia should simply grow out of, with a hopeful timeline of within her first year of life. 

FEED ME!

"I can hold my own bottle"

Cecilia has been a rock star lately with her feeds.  Cecilia is still on TPN (IV Nutrition) but has been receiving less and less as time as passed.  We started this journey with Cecilia receiving 50% of her feeds through her TPN and 50% of her feeds through a feeding tube.  It has been a slow and methodical journey, often times feeling like we are taking two steps forward only to take one, two or three steps backwards. 

Over time, Cecilia has been able to take more and more food through her feeding tube.  The doctors even allowed Cecilia to start taking bottles every hour as she began to cue (show she was hungry) and Cecilia LOVED this!  Most days Cecilia will take a bottle every hour she is awake!

As it stands, Cecilia takes 90% of her feeds either through her feeding tube or by bottle!!  She still has 20% of her feeds running through her TPN - Yes I know that totals 110% but they cannot reduce her TPN by anymore so it is 20% or 0%.  In other words, we are getting closer to shutting off her TPN!

On Monday Cecilia weighed 4.94 or 10 pounds, 14 ounces!!

Wants to Walk before she Crawls...

 

Iz likes to play

 Yes I am speaking of my mini-me ... Miss Isabelle Grace.  This child wants to do everything NOW.  She absolutely loves learning new things and gets so excited when she accomplishes something new.  Her new favorite is to play in her activity center.  Six weeks ago she screamed her head off when set in it, but over the weekend, she did not want to get out.  So cute.

Both Zoe and Isabelle love to roll everywhere.  I believe it is safe to say the girls are now rolling with a purpose.  They will go after toys they like (both like a set of plastic keys - meaning we went and purchased a second set so they could both be happy) and after Gus!!  It is now nothing new for either Adam or I to take one baby for a diaper change and return to find the sister underneath the bed either teasing Gus or passed out!  Gus is not a fan of their new skill.

The Neverending Winter

Zoe is "patiently" awaiting the day she can go outside

Due to the weather, the doctors have elongated RSV season meaning Zoe and Isabelle each must receive one more RSV prevention shot in April.  The shots will not circumvent the girls from contracting RSV but should help lessen the side effects if they were to get the disease.  As a result, the girls must stay in quarantine for awhile longer.

Their most recent weights from last week are:

Isabelle Grace weighed 13 pounds
Zoe Elizabeth weighed 12 pounds, 12 ounces

Beyond Thankful

Since I have last written the girls have been blessed with the most incredible, thoughtful, handmade gifts.  Gifts that Adam and I cherish now and know the girls will hold onto for the rest of their lives.  

Zoe Elizabeth

Thank you Becca for your hard work, time and effort, and most importantly, love.  The cross stitched birth announcements are beyond fabulous.  Adam has already hung them above each girl's crib.  You outdid yourself!  Now hurry up and plan a trip to Eau Claire so you can meet your nieces!!


Thank you Mrs. Stangler for the wonderful scrapbooks!  I look forward to filling them with pictures and the girls being able to go through them when they are older.  Each page must have taken so much time as each detail is impeccable.  We are so blessed to be loved by you ~ Thank you.

Isabelle Grace

Thank you Momma Jadin (and Tom), Claire and Michael.  In a year where you were all undergoing changes and awaiting your own miracle, it is incredible that you took the time to think of us.  The handmade bibs are adorable!  And the handmade quilts - I do not have words for the amount of love we felt upon opening this gift.  The girls are incredibly blessed to have such a wonderful keepsake.  Thank you is definitely not enough. 

Another special thank you to one multiple mom - Carey, you did not have to think of us and you did.  Your gift card to Build A Bear was so thoughtful.  Adam and I are looking for the closest location to make a recording bear for Cecilia to keep in the hospital with her and be able to hear our voices.  You are incredible!  I hope the boys (and little girl) know how incredible you are.

Our world has been turned upside down and topsy turvy, however, through all craziness, we have been blessed by the ongoing love and support of our friends and family.  This is a gift for which we can never repay and will never be able to say thank you enough.  In a world where it is so easy to take people for granted, please know, you have not been forgotten and your love is felt, appreciated and valued. 

All our Love

Adam & daneille