The Scary Road

Wednesday, March 19, 2014

 Baby bucket list...go to church! Love GFC! Check!

So, we've just experienced for lack of a better term...hell.

Sunday began so beautifully and ended in misery.  We decided to take sweet pea to church so she could hear the worship music mama loves so much.  She slept soundly and probably had sweet dreams.  From there the afternoon led us to heading to my parent's house so she could experience that trip as well.  Made it home by 8:30 and began our nightly routine of bath and awake time with reading and music.

At about 11:00 pm, we began to hear some nasal congestion and by 2:00 am, it was exaggerate and she seemed uncomfortable in her kangaroo pouch.  So, we called our pediatrician on call and she recommended coming into the office first thing.  We continued to hold her and watch through the night as her breathing became more labored and she become more uncomfortable.  At about 5:30 a.m., I noticed that her eyes were rolled back and her face didn't look quite pink.  Her machines had been going off and on all night so it was very difficult to see when she was in actual distress.  However, this time I could tell something wasn't right.  I lifted her up and her head flopped to the side and her body was limp...completely limp.  Arms fell and legs fell.  I couldn't see her chest moving and her color was changing.  I tried stimulating her but it wasn't working this time.  Jimmy was already off to get the oxygen from the car while I was in the bedroom with her so he didn't see her lifeless body.  It was horrifying.  The seconds waiting for him to return.  I must have been screaming because minutes later both boys showed up in our room.  They both kissed her and then Jimmy ran in with the tank.  I asked the boys to leave and we began to work on Everly. Minutes seemed to be hours as we offered her oxygen and had to wait to see how she responded.  For what seemed like an eternity later, she let out a faint sound and her body shook.  Then she began slow, shallow breaths along with another faint sound.  We continued to leave the cannula on and both of us just sat and watched her for the next three hours until the clinic opened.

Daddy doing mouth care with sweet pea

Once we arrived, they x-rayed her chest and determined that she had pneumonia and one of the lobes in her right lung was collapsed making her breathing all but impossible.  The doctor visit wasn't as cut and dry as I'm about to tell you but for the sake of time and my heart, I will cut to the chase.  They prescribed an antibiotic and breathing treatments to help.  Before we left, they did try to "pop" her lung out by using the Ambu bag over her nose and mouth.  No sure way to tell if it worked but I know that it hurt and made her sore for days so for the pain I'm hoping it was efficient and helpful.

Once home, our Hospice nurse Mary came over to visit and spoke with us and based on the doctor's report and how Everly looked and was breathing, we weren't sure she could overcome such a serious illness.  Monday and Tuesday, suffice it to say, were spent in tears and spending lots of time holding, talking and loving on Everly.  We watched her like a hawk and she was literally never put down for about 72 hours.  She did not have any real awake periods during that time and was on continuous O2.  We read her books, prayed over her, sang to her and had private moments with her.  We just continued to love her over the two days as we had everyday before.

Brother reading his high school book to his little sis

Then Wednesday morning I decided that she needed new clothes on and needed to leave the couch that we had been stuck on for two days.  So, we made our way slowly with an oxygen tank and her monitors into her room.  Managed to clean her face, change her out of her sleeping gown and do some mouth care.  All of this must have aroused her enough to the point that she was awake for over an hour and a half after that!  She was breathing better and was looking around and alert.  God wasn't ready for her to come home yet after all!  We were so elated to see her looking so remarkable after the scary road we had been on for two days!

We continue to praise God for his care and for his faithfulness even in situations like ours when we don't understand.  It isn't easy.  But we are thankful for each and every day that we have with her and praise Him for those extra hours and days and weeks and now a month!   How blessed we are!

 Is that a nerf gun? Boys...she's a newborn! Nerf war...check!

Thank you to all who have continued to give us support.  Never before in our lives have we been in a position to need or accept such help, but it has been so comforting and helpful to our family.

At Nana & Papa's house...check!

 Please continue to share her website and the Love For Everly Facebook page with others.  Let's tell everyone that this rare genetic condition doesn't look like what you google.  We don't need to give up hope on these perfect children.  They deserve every bit of our attention just as other children do.  The medical community needs to know these babies have a matter how long it is.  They are loved.

With love and appreciation,


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