Day 82: Hard day

We woke up to a phone call this morning from the doctor stating that Grey had an episode that required more intervention than just stimulation.  Her heart rate and oxygen saturation dropped dramatically requiring two minutes of chest compressions and bagging in order for her to recover.   We immediately got ready and went straight to the hospital.

Upon arriving to the hospital we were greeted by the nurse who had Grey that night and the one who was taking over for her.  They both were encouraged by how she looked at the moment and said “her color is looking a lot better.”  It’s terrifying to us as parents when things like this happen, but it is also scary for the nurses.  We debriefed the situation with them and shortly after talking Grey had another episode that required the doctor to come to her bedside.  Her heart rate dropped again and she looked very limp and pale.  A color no mom wants to see their baby look.  It hit me hard.  I had to leave the room because my emotions were overflowing and tears started to flow.  Why is this happening?  She has been doing so well.  All of these thoughts were rushing through my mind one right after the other and I felt helpless.

Feeling helpless and out of control is one of the worst feelings.  The “NICU roller coaster”  was described to us at the beginning of this journey and today has been the definition of that meaning.  Grey was doing so well.  She still is, but today felt like a step in the wrong direction.  It’s discouraging to us, but really, look how far she has come.  It’s amazing!  Some encouraging advice from a friend was to look at Grey’s accomplishments more than her set backs to get you through the hard days.  I’ve really tried to focus on that.  Even though today was TERRIBLE,  I am glad we are here today and she is fighting to win each day with God right by her side.

I returned to her room, Grey was fighting again!  Her heart rate was back up and she was looking around like “what just happened?”  They are running some labs to look for infection.  They stopped her feeds, she is back on NAVA (ventilator) continuously, and she has an IV for antibiotics.  We won’t know the lab results until possibly tomorrow or the next day.  We will update you when we find out.

As always, thank you so much for praying. She hasn’t had any major episodes since this morning.  Specifically pray that she NEVER does this again and for God’s continued protection.

image

 

 

9 thoughts on “Day 82: Hard day

  1. Oh sweet baby Grey, I also pray this doesn’t happen again. It brings back so many memories of these rollercoaster days. One of our little girls also had a week or so of several similar episodes of needing a lot of intervention to get her breathing again, including one time when I was with her – it was so terrifying for me to see her go blue that reading about your experience makes me cry remembering the emotions and seeing that it scared the medical team. But Grey is a very strong little warrior and God has her under His wing. Praying that this doesn’t happen again and her breathing is stronger each day. Peace to you! x

  2. So sorry that u guys have to rough this journey, full of uncertainty. I dont know u guys but have been following Greys story from the begining and feel happy and sad with u all. Praying for the health of ur lil girl and the strength of u and your husband

  3. My heart is so soft for your lil angel.. I have come to believe that medicine only goes so far and the rest is up to them.. Your angel seems like a fighter and we will all keep our thoughts and prayers for you all..

  4. As someone who has ridden ” the NICU roller coaster” reading your update took me back to Taylor’s experience and I can empathize with all the emotions of yesterday. We will continue to pray for all of you, that Grey continues to improve and grow, as well as peace for both you and Ryan.

  5. We are all thankful Grey pulled out of her frightful situation! Years ago I had read a book about the life of a nurse in a Nicu unit and when you talked about the roller coaster of the unit it reminded me of the same phrase that was used in the book! Your nurses in that unit are the most caring and educated personal in the medical field and you have the best looking after your little one!!! They are right….look at all she has done in this short time!!! She is a fighter!! I wish we could paint war paint on her head like the Indians because she is in a war and she is WINNING!!!!! She is really a gift and spreading her love around to all of us!!! The nurses, doctors and God will keep her safe!!! Peace be with you Allie and Ryan!!! Thank you for taking the time to keep us updated!!

  6. Praying throughout the day, it was hard for me too, knowing how discouraged you must’ve felt (understatement I’m sure)…but…weren’t we all reminded…once again….how far she’s come and what a miracle she is? Grey steps. The Lord is her Great Physician…her Protector and her Keeper. Sending my love from Alaska. Praising God for His great Grace today. Xoxo

Leave a Reply

Your email address will not be published.