Thursday, March 19, 2015

Turning a corner and starting the "Glad Game!"

Today I feel so grateful.  Grateful for good doctors. Grateful for amazing nurses.  Grateful for loving family and friends. Grateful for a patient and loving Heavenly Father who loves me unconditionally.  And grateful, that over a year ago, I started writing this blog.  This last week, as I reread some of the things I wrote during our Anneliese experience, I felt like past Heidi served present Heidi a nice slice of humble pie.  For the past two weeks I had been feeling sorry for myself.  Dwelling on how hard this situation has been for us.  Living in my own pity-party....constantly.  Doing this got me pretty angry.  I started comparing my heartaches to others.  I felt guilty seeing people who thought I was being so strong, while on the inside I was raging about how unfair (I felt) life had been to me.  I  started comparing this NICU heartache to my experience with Anneliese.  And even though it was just a year ago, I started thinking that I handled my heartache and loss better with Anneliese.  I started thinking I wasn't as strong now as I was then. . .and that is why this NICU experience has been so hard.  But, that is why I am so grateful for this blog.  I decided to reread some of the posts I wrote before Anneliese was born.  As I read, I realized just what past Heidi would have given to have had the chance to be going back and forth to the NICU to see her little girl.  How would past Heidi, pregnant with a little girl she KNEW she would be saying goodbye to, have felt hearing present Heidi be so ungrateful for the many miracles that were happening.  That moment I decided to change. It never ceases to amaze me how easily we can lose sight of our blessings and how quickly our joy can be stripped away because of our own ingratitude. A dear friend shared a quote by Mark Twain last week that really helped me to turn that corner fully and find joy again, "Comparison is the death of joy." I was in shock with how much I had been comparing everything in my life.  I had even started comparing Vivienne's progress to the baby next to her who was born at the same age of gestation and was already in an open crib, was eating orally and seemed, from my perspective, to be progressing much faster than Vivienne.

That quote made me start thinking, I was killing my joy.  ME.  Comparison in my life and mind was destroying my joy! And not just my joy. . .my whole family was suffering because of this.  I came out of my own pity party and realized the damage comparison had caused.  Poor Jillsie was falling apart and Jake was trying so desperately to be positive for all of us that I could see the strain in every glance.  I started working on taking comparison out of my life and found that I kept thinking about the movie Pollyanna.  Do you remember that movie?  Well we borrowed it from my mom and started playing Pollyanna's "Glad Game" at home.  So, when we don't like a situation, instead of getting bugged or mad we think of something to be glad about.  :)  It might be cheesy. . .but it has worked WONDERS! Because we are recognizing the good again, this past week has really helped us to finally see our blessings and the progress that Vivienne is making personally.

Almost immediately we have noticed her growth and progress again. She is now in an open crib and maintaining her body heat perfectly! She has moved down from the high-flow cannula to the regular nasal cannula, she is down from 25% oxygen to 21-23% for the most part, and is down from 4 liters to half a liter which has allowed her to start oral feedings! She is now working with the occupational therapist and me every day to latch and eat on her own! On Sunday, she latched on within seconds and my bond with her has continued to strengthen more and more every day since then as her ability to eat on her own has developed more and more. She gets fatigued quickly and struggles breathing afterwards from all of the hard work, but this is her form of exercise right now and she has every reason to be exhausted after working so hard. Jake and I laughed about it the other day after walking the 4 small flights of stairs at the hospital and landing out of breath. We don't know if this is completely normal, but it made us feel better to think so:). Vivienne is such a little fighter and her personality is coming out the more she learns and grows.

She is not without a new set of struggles however. The fun roller coaster experience of the NICU. Each week we reprioritize our prayers for those things she needs to learn and develop so we can bring her home. This week's prayers are:

1) BREATHING. We pray she can continue to come down on her oxygen and breathe fully on her own. We would love her to come home without oxygen!
2) EYES. Vivienne's eye exam this week revealed that her eyes are now struggling from the constant oxygen she has been on these past 8 weeks, and her oxygen has increased again slightly because of her therapy in learning how to eat orally in mastering her suck, swallow, breathe reflexes.  She now has to get eye tests every week.  So, we need her eyes to develop properly with no long-term side-effects of her current ROP disease
3) HEART MURMUR. She still has a small heart murmur, which they will continue to monitor.  We pray it will close again completely and stay closed, so she wont need surgery
4) FEEDINGS.  She needs to master and tolerate her feeds orally and not have oxygen problems during or after.

The doctor told us today that if she can do 2 of these 4 things we will be able to bring her home! We joke as parents that "Home" is a four letter word the doctors NEVER use.  So for someone to EVER say "Home" IS HUGE! So, Yes...they used the "H" word and told us for the first time exactly what was needed for her to come home. There were no other "concerns" mentioned. When Vivienne's eyes look good and eats orally then she can come HOME! Her PDA can be monitored through regular checkups and is not bad enough to keep her at the hospital, since she can come home with oxygen if necessary. We just need her to grow and develop a little more and we can bring her home to meet her sister! There is much to be grateful for and we are excited that she is doing so well! We know she won't be home tomorrow, but we are hopeful it will be soon!



  1. Man, I love you guys so much. Thank you again, for sharing your heart and learning. What a blessing and example of the gospel perspective in action. It isn't always pretty, but God somehow miraculously makes it so in the end! I just read this vs. this morning in Jacob 4 "Nevertheless, the Lord God showeth us our weakness that we may know that it is by his grace, and his great condescensions unto the children of men, that we have power to do these things." I hate seeing my weaknesses. I get frustrated by them and Satan works really hard to discourage me, but I am grateful that seeing my weaknesses allows me also to see God's grace.

  2. So fast forward a month into April. I don't want to steal your thunder, but based upon the text message you just sent, we have cause to rejoice today. It's okay to be angry with God for a season. He's got big, broad shoulders, and He can take it. In the meantime He goes quietly about His business of healing and blessing. . . so happy she will be coming home soon and leaving that other "H" word in her rear view mirror.

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