Friday, October 30, 2009

Not Without a Hitch

Ella is still recuperating and so I thought I’d give her a little break from writing the blog.  So I know I’m not as funny as the little one (not as cute either), but for now I will have to suffice.  I apologize for not posting sooner; it’s been two weeks and we’ve hit a few bumps along the road.  Ella’s surgery went as planned on the 16th.  She got her G-tube (feeding tube) put in and her rectum rerouted to its appropriate spot.  You can see in the picture the large appliance on her belly that is holding the feeding tube in place.  Thankfully, she won’t have that forever.  In 2-4 weeks, when she is a bit bigger and her stomach is more healed, they will replace the appliance with what is called a mickey button.  Basically it is a flap (flush to her stomach) that we will be able to open and close when she needs to be fed.  Her new bottom looks amazing.  In fact, the most exciting thing that happened two days after the surgery was that she pooped out of her new hiney!  This little event that us healthy folks do every single day and take for granted was a milestone for my baby Ella, and one that we celebrated.  So all in all her surgeries went well.  She came out of the OR looking great, until we noticed her foot.  Before surgery an IV was placed in her left foot.  She couldn’t eat for 6 hours prior to surgery and this was making her quite mad.  She was kicking (again with the bicycle), screaming (not literally of course), and turning beet red.  When they got up to the OR, before they even put her to sleep, they realized that her IV had infiltrated.  When this happens the IV fluids leak into the surrounding tissue causing a chemical burn.  This was upsetting for us and certainly painful for Ella, but it has since improved and looks a lot better than it did a week ago.  And as if this little girl needed another thing to cause her discomfort, her trach site (called the stoma) became inflamed last week and began oozing discharge.  While in the OR the anesthesiologist recommended they change her trach to a cuffed one.  This kind of trach allows for minimal air leaks.  On Friday, when Erik and I performed her trach change, we noticed that her stoma looked very irritated and swollen.  The ENT thinks it is inflamed because of her skin not being used to the different type of trach.  They’re giving her steroid drops down the trach, which hopefully will help the swelling and redness come down.  So with good reason, Ella has had days when she’s been extremely agitated and fussy.  On her bad days, she cries often and is inconsolable.  She is off the morphine, but they give her Tylenol from time to time to take the edge off.   Yesterday was our first good day, thank God.  She took long naps, but also had many calm awake periods.  She played with the occupational therapist and even practiced sucking on her passy.

As for Erik and I, we too have our good days and bad days.  For Erik, it absolutely kills him to leave Ella and I on Monday mornings.  We keep in close contact during the week, but of course he wants to be here and see for himself what’s going on with the little one.  For myself, it is very difficult to be without my husband and family.  There are days when I could really lean on them physically and emotionally, days when the stress of it all starts to drain you.  There are still times when we mourn the loss of a typical baby experience.  After three months of living our lives in a NICU, we long for that day when we can take Ella home and finally be a family.  Never in a million years would we change having Ella.  Sure, we wish she was healthy - we definitely would change that if we could.  And certainly if we could, we would take away all of her pain in a heartbeat.  But, despite all the heartache that we are going through she remains the best thing that has ever happened to us.  She has brought a joy to our lives unlike anything we have ever experienced.   On days when I am down, I try to remember that it is not about me, but about Ella.   She is our mission, the reason we wake up each day, continue to put one foot in front of the other and keep going.  And every morning when I arrive at the hospital and see her beautiful eyes and sweet lips, a smile comes to my face reminding me of how blessed I am to have her in my life.         

Thank you again for all your prayers for Ella and our family.  Please continue to pray for her healing and our strength.  

Love always,



  1. What a fighter!!! Thank you taking time to fill us all in---you write so beautifully with such emotion!! Glad to hear how well Ella is doing and happy to hear about her pooping!!! She is a little doll---lover her outfits and matching hairbows!
    Los of Love,
    Lucette, Randy,Jonathan and Jena

  2. HAPPY HALLOWEENI ELLA BEANI!! We love you so much and wish we could be there to see you in your little Angelina Ballerina costume Nonni made with love!! Love you to Nina and Erik and you will be home before you know it. You are doing such a great job taking care of our little Ella girl and we are so proud of you!! Try and remember all the people who love you guys and that are praying for you everyday, although we are not there with you physically there is not a day or minute for that matter that goes by that you are not in all of our hearts!!

    The Morris Clan

  3. Happy Halloween Ella Bella! We love you so much and cannot wait to see you in your Halloween costume. Georgia Grace is jumping up and down in celebration of your pooping! Yea for Ella...she is pooping...she is saying! Anyway, Nina and Er hang in there. It kills us too that we can't be with you guys more often. I am sending lots of hugs and kisses your way today. Mwwaah! xoxo TTYL. My girlfriend Tara sent this to me for you. Hope it reminds you of the blessings all around you, especially the ones in Holland!

    I have been meaning to find this little vignette for your sister. I read it many years ago in nursing school and I have always loved it. Maybe you and your sister have seen it already. I think it applies to just about every twist and turn that life hands us, but especially to that of becoming a parent to a child with special needs. Just from reading Ella Rose's blog I can see that your sister and brother-in-law are really "enjoying Holland" for very bit of beauty and wonderment that she has to offer already (and she is really such a peach).

    Much love

    By Emily Perl Kingsley
    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

  4. I like Ella's blogs better...this one choked me up too much ; )...Ella continues to teach us all a lesson Nina...she is here for a purpose...she is here to touch and teach all the people around her...Watching her humbles you as a person to truly NOT take anything for granted. I learned that with my nephew Dennis as well. If you stay positive and believe that all the white energy in the world is surrounding your beautiful baby girl...she WILL come home...she is a miracle already! God Bless sweetheart! We truly CANNOT wait to meet her! BIG BIG hugs and kisses, The Marine's (Jose, Liv, Jake & Sadie)

  5. The Marine Family wanted to send lots of love and BIG BIG warm cozy hugs to Ella for Christmas...May the blessings of Jesus be by her side always...and may the joy of the holiday season bring positive energy into her life every second of the day!!! Love you Love you Love you!!! xxxxxxx

  6. I found your blog - my daughter has Nager Syndrome. I see you haven't posted anything in awhile. I hope all is well. My daughter's blog is