Thursday, February 26, 2015

Vivi at 31 weeks

Vivienne will be one month old on Friday.  This whole experience has been crazy.  The roller coaster of emotions is insane.  Updates seem hard because they are CONSTANTLY changing.  One moment Vivienne is doing great and the next we have 6 new worries we didn't know even existed.  We used to say 'Today is a good day' or 'Today was rough', but we've discovered that it's more moments than days.  So for now, Vivienne is having a good moment.  And I am so VERY grateful for these moments!

Vivi's Update...for now :)
HEAD- Her head ultrasound went well and the bleeding they did see is small and raises no concerns for the Drs.
EYES- Vivienne's first eye exam was going to be yesterday but they pushed it back to next week so...one less thing to stress about for now;).
HEART-Vivienne had the heart ultrasound (echo) as well. It still showed the PDA murmur in her heart but it is small so they are seeing if it will close and stay closed on its own now. They hear it sometimes and other times they don't which means it is probably popping open every now and then. If it doesn't stay closed, most likely she'll need surgery. But, once again, a stress for a different day.  LUNGS- She is still on the high flow nasal cannula but they lowered the pressure from a 4 to a 3 and is in between 28%-37%.  She still has a lot of desats (where her oxygen saturation drops pretty low) but is having less brady cardias (where her heart rate drops because she's not breathing well).  We are praying lots for her lungs and heart to be healthy and strong. Her PDA does affect her lungs and whether the lungs will function to the best of their ability, so getting the murmur resolved quickly will help her so very much!
INTESTINES &FEEDS- She is doing pretty good on her feedings.  They did slow down the amount they usually increase her foods by, because she had a lot of food still in her stomach that she hadn't digested on a couple feeds.  So because of her NEC infection that she just fought off, they really want
 to take it slow so her intestines can handle it.  They also are trying to decrease the extra fluids in effort to keep the PDA in her heart closed.  But, once she gets up to full feeds they will stop the IV nutrition, take out her PICC line and add fortification to her milk to get her nice and chubby for us.

We are so grateful for each day with her and are so very ready to have the joy of bringing her home.  We know she is where she needs to be and pray that we can patiently endure this crazy roller coaster ride.

I have been reminded constantly of the MANY miracles along the way and have tried to focus on those so I don't drown myself in the 'whys' and 'if onlys'.  We have bad days and frustrating moments.  I cry a lot and feel sorry for myself even more.  I envy pregnant women who get to their last trimester and envy women carrying car seats with new little babies. It seems the heartache of infertility is very similar to leaving a baby in the NICU.  I get frustrated with myself for feeling this way and have
avoided seeing people who know me and know of our last two years of heartache as much as I can. After losing Anneliese, it took awhile to feel like I could have conversations with friends and neighbors without feeling like I was just putting on a happy front.  Now, I didnt prepare mentally for this.  I wasn't ready.  I wasn't ready for the mirrored sadness in others eyes.  I wasn't ready for such a hard heartache again.  I wasn't expecting to want to avoid everyone I know for fear they'd ask about how I was doing or how Vivi is doing?  Asking is definitely not bad...it's just that I'm scared to answer.  This is when the 'what ifs' come into play for me.  What if I run into someone at the store and fall apart as I'm grabbing a gallon of milk  and can't stop the sobs that come on a regular basis.  What if they ask a question that I haven't thought of yet and have a new worry.  What if it's a REALLY bad day.  What if I feel like I can't do one more day of this at the moment I see someone.  What if.

 So for now, I try hard to control my feelings in public so I can function. So I can be a mom that doesn't cry all the time.  It's been a hard two years and I pray Jillsie forgets how much I've cried.  I
know that if I can stop the tears long enough I will begin, once again, to see the many miracles and joys along the way.  The joys of stress free moments.  The joys of a smile from my girls. The joy of planning for Vivi to come home.  The joy in planning for Jillsie to meet her sweet little sister.  Jillian, Anneliese and Vivienne are AMAZING little girls and I'm SO GRATEFUL that I have been blessed to be their mom.  I have been taught so very much by each one already.  But the thing that they have taught me that has been the most valuable, is the glimpse of my Heavenly Fathers love for me and of my Saviors love for me.  God is aware of me personally.  The Savior knows my heartaches perfectly.  They have not left me alone.  And for that knowledge, I will be forever grateful that I am a mom to my girls!

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