Wednesday, July 2, 2014

Stolen Time

{Beautiful roses that my cousin got when Ellie was born - so glad she sent me this picture so that I could see how they bloomed all the way in Texas!}


Ellie has grown a lot in the past week.  She is now 3lbs 10oz.  She is tolerating her feeds pretty well - just experiences a lot of reflux as we have been told that most premies do.  We try not to jostle or move her right after feedings and the head of her crib bed is kept elevated to help with this.  She still needs a little oxygen support and we are still waiting for her to grow out of her oxygen saturation and heart rate dropping from time to time.

I have more of my strength back now.  We are still watching my blood pressure and are titrating down on my blood pressure medication.  I will hopefully be off of it altogether by next week.  So with that said, I am able to spend more time with Ellie at the hospital during the day while Wesley is at work.

I was finally able to sit down and talk to one of her neonatologists yesterday for almost an hour.  I cannot tell you how grateful I have been that I went to nursing school.  He and I were able to have an open conversation about how she is doing, and what they feel is the best plan for her moving forward - touching on everything from her respiratory issues, to her reflux, to when to start her oral feeds and how she is doing gaining weight.  It was great because he never had to slow down and explain things in simple terms, which would have just slowed us down.  It is comforting to me to be able to understand the underlying physiology of what she is going through and what she needs for some of her internal systems to continue to grow and mature.

Basically, they are trying to get her down to room air by increasing the force of the oxygen flowing through her cannula.  We think that a lot of her lung immaturity is contributed from inflammation in her lungs.  The inflammation, most likely from micro-aspiration from her reflux (some of her milk coming up and going into her lungs), makes it harder for her blood cells to pick up the oxygen that she breathes in through her lungs, increasing her work of breathing.  We are hoping to start oral feeds soon too because the NG tube (tube she is now getting her feeds from) is keeping her gastric sphincters from fully maturing, thus adding to the reflux problem.  So, we got to start "practice breastfeeding" yesterday...making yesterday one of my favorites so far.  It was a really great bonding experience for the two of us and her euphoric grins after we tried were absolutely priceless.

Right now we are trying to look at our situation now as "stolen time."  If we were to play the "if" game, then...if none of this had happened, Ellie would still be growing inside of me.  She wouldn't be here yet.  We wouldn't have met her yet.  We wouldn't know who she is or her sweet and spunky personality.  The time will soon come in a month or so, when we will get to take her home.  Everything will be a bit more normal than it is now.  But for now, we try and enjoy our "stolen time." How I get to hold her during the day while she sleeps.  How Wesley gets to read to her at night. (Right now, since Wesley wanted longer stories to read her, we are reading the most obvious book that any parent should read to their child while in the NICU - Harry Potter.  Because you can never start them too young.  Any Wesley's minor rantings at British words make me chuckle.)

We love you sweet Ellie!
Grow, grow, grow!!

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