Tuesday, April 14, 2009

Tuesdays with Grey




Today Mom and I visited with Greyson for about 5 hours. Overall, he seemed to be having a good day! We are going to start the medication tonight for his PDA and this medicine will be continued for 72 hours. I’m not sure when we will know if Greyson’s PDA has closed. This is something I will ask the nurses or doctor tomorrow.

Greyson’s regular nurse was back today. Her name is Terri and she told mom today that she loves Greyson. I can’t tell you how much that means to me. I’ve struggled a bit with the rotation of nurses. I want Greyson’s nurse to actually know him- to have the ability to anticipate his needs. Most importantly, to know that the little guy doesn’t like to be touched, have his diapers changed or head rotated. I simply think that this consistency would improve the continuity of care. And this will also help console me.

We also had two special visitors today… Lilly and Jamie from Apple! I miss my Apple friends like crazy. I planned to surprise them with my little pregnant belly but my shocker moment was sorrowfully interrupted. On a happier note, these girls came with a very exciting gift- a flip camcorder!! This mini HD camcorder will capture the precious moments of Grey’s life and progress. We are so fortunate to have such wonderful, thoughtful friends!

Another positive to share… I actually reached out today and spoke with another mother in the NICU. This is something I have avoided from the beginning. Sadly, I’ve sat quietly for 15 days only speaking to Greyson, his nurse and doctor. The reason for this avoidance is fear. Fear that I will learn that Grey is the smallest baby or fear that I will learn that Grey’s condition is worse than others. However, today I did not feel fear. This mother was unbelievably informative and kind. This is her third premature baby. I let down my guard and before I knew it I was crying with a complete stranger- a stranger who not only walks in my shoes but shares the same everyday uncertainties. In the beginning I considered this a very private situation- I wanted Matthew and I and our families to be our only support. I was apprehensive of the blog- I have never been a blogger. However, this blog has opened the door to so many other families in the same situation. I have been sent numerous blog links of babies just like Grey- tiny and fighting! Kim Meeks- I thank you for sharing Mary Farris! We visit Mary Farris’ blog often. I searched her blog last night hoping to find some information about PDAs and sure enough I got my answer or should I say reassurance.

I snapped a photo tonight of Greyson with his new imuffs. We haven’t posted pictures lately because there is so much going on in his incubator right now. Several new tubes and a new machine. And yes, those little white straps serve a purpose- to comfortably restrain our wiggle worm.

4 comments:

wehdostables said...

I have tried to comment to you many times.. We are all thinking of and praying for your precious baby! Call me sometime, I have a calendar that gives day-to-day reports from when Mary Farris was in the NICU and it helped me so much to keep a journal. I'm so glad you have seen our blog. You should join the micropreemie mom group www.preemieblogmoms@yahoo.com. They have been a fabulous resource and support group for us.
~Kim

Robert & Amanda said...

You are in my thoughts and prayers. May your tiny miracle bless you and your family for many many many more years. I will be praying for his recovery. I know we are not close close friends, but if you need anything feel free to call, even just to talk. 931-626-1118. God bless you and your little man...
with love,
Amanda Sparkman

mommie &millie said...

Kiley-
I am and will continue to pray for Greyson to respond to the medicine verses surgery...and I will pass that on to others we can count on for prayer. My heart goes out to you both-I can't even imagine. Greyson is so precious. I also pray for your peace and strength to always be present.
Robin

mcbridea said...

Hey Kiley and Matthew... my heart reaches out to you as I read your postings. Please know that you are in our thoughts.
I would love to come up sometime and meet little Grey and to keep you company, but I know you are limited on visitors. Please let me know if that can happen and I would love to! Keep in touch and know that you are in my prayers.
Love,
Matt and Amy

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