Sunday, October 4, 2009

Surgery Postponed

The stars didn’t quite align for me to have my surgery on Friday.  It all started this past Monday.  The docs did their rounds in the morning and because they thought I had a great weekend they not only bumped up my sprints to 6 hours twice a day, but they also increased my feeds to 55mls per feeding.  The latter I was psyched about because I don’t know if you noticed, but I’m a hungry little girl.   Plus, I’m growing so I need all the calories I can get.   Believe it or not, I am now 6lb 12oz and proud of my chubby legs and adorable rolls (a little scared though, cuz sometimes my mom and dad say they want to eat them…not too sure what to make of that).   Anyway, little did the docs know that I was brewing something.  On Monday, I had to end my sprint an hour early because I was retracting (using accessory muscles to breathe).  This means I was getting tired and thus having difficulty breathing.   Then on Tuesday, not even an hour after I started my sprint I began getting tachypneic.  Fancy word, right?  My mom’s medical vocabulary is becoming pretty extensive.  In fact, it’s funny because sometimes the docs go to her for updates rather than the nurses.  So that big word, tachypneic , just means that my respiratory rate was high, in other words I was breathing fast.  This coupled with me looking lethargic and having a high CRP level (measures inflammation in the body), made them suspicious that I am under the weather.  The docs felt that they rather not send me to the OR when I’m not at my best; when I’m not 100 percent.   So I wiggled my way out of it for now, but I’m sure I won’t be able to put it off forever. 

In other news, I am starting to make some progress in the area of sucking.  Not only is my jaw small, but my mouth is not so spacious either.  I like sucking on my mom’s finger, but not so much on that thing they call a passy.  The passy is not nearly as soft and malleable as my mom’s finger.  Plus, I get frustrated with the passy because I’m not able to really control it in my mouth.  Oral stimulation is important for me because trached kids sometimes develop oral aversions, especially since they are not used to eating through their mouths and tasting food.  Also, my mom and dad each completed their first trach change.  This must be done once per week so that bacteria don’t develop in the trach and get me sick.  Mom and dad cleaned my stoma (the opening where the trach goes in), and then pulled out the old trach and the respiratory therapist put the new trach in.  Mom said her stomach dropped the second she pulled the trach out.  Each time they change my trach, the worry is that they won’t be able to get the new trach in and that I won’t have an airway.  But, thankfully that didn’t happen and they know what to do in such an emergency situation like that.  The final good news of the day is that from a developmental standpoint I am developing appropriately so far, yeah!!! Friday mom met with the developmental psychologist, who meets with parents of all the “old timers” in the unit.  To qualify as an “old timer” in the NICU you must be 2 months or older.  I feel bad for my 7 1/2 month old roommate, Max.  He must be considered ancient!  So I am doing things like focusing on faces and bright colors, following people as they move about me, grabbing at toys, my face (the scratches prove it) and any other items I can get my hands on, adjusting to new positions and experiences (the swing, papisan, etc).  Speaking of, that vibrating chair is calling my name right about now.  Gotta run, but I will update you when I get a new date for my surgery.

Love always,

Ella Rose 



  1. To our little Angel,

    There are no words we could say to you to express what you mean to us, but we will try.

    From the day we found out we were expecting you, we knew that God has chosen our family. God had something bigger planned for your life than we could have ever imagined. Mommy and daddy will never forget the day you were born. Nobody who was part of it will, either, August 6th 2009 was the best day for us. Ella, you have no idea how you have impacted this family. You are the greatest miracle that mommy and daddy have been a part of and thank god everyday for you. We promise to be the biggest voice for you here on earth. You have taught us so much about what life is all about, not to sweat the little things. You have made us better in so many ways and you didn't even say a word to us. The hardest part of daddy day is leaving you and mommy, but I know soon we will finally be a family together. We love you so much and now reaize why god has blessed us with you.

    Love always,

    Mommy and Daddy (Tanti Baci)

  2. Nina & Erik,
    I am in awe of both of you. Your courage, spirit, faith and love are inspirational. I will continue to keep Ella in my prayers as well as the two of you. She is so adorable and hopefully one day in the near future I (we) can meet her. God without a doubt chose the right parents for her.
    Much Love,
    Lucette, Randy, Jonathan and Jena

  3. Baby Ella - We are so pleased to hear about the wonderful new milestones you are accomplishing...there was never a doubt in my mind that between your brave, strong mommy and daddy and the wonderful family and friends (and prayers) you have surrounding you will knock the socks off of these doctors and let them know that you are here to fight and win!!God Bless You Baby Ella and your amazing spirit...God Bless Mommy and Daddy and let them know that the Marine's pray for you every night (and send special blessings to you from Jake and Sadie)...We absolutely canNOT wait to meet you! Love and Kisses, Jose, Liv, Jake & Sadie

  4. Hi guys...
    I just wanted to let you know that my grandma added Ella to her prayer list. She was so cute. When I told her about Ella she pulled out a little memo pad from her purse and added her name right away. I hope things continue to go well and that we can visit soon. The pictures of Ella are amazing... keep them coming!
    Love and prayers,