Saturday, April 11, 2009



I’m not sure if I am asking Greyson to take confident breaths or if I am talking to myself.

I didn’t update the blog yesterday because we didn’t have a very good day. Moreover, I arrived at the hospital with my dad and immediately noticed that Grey was distressed. His tiny arms were frailing around and he had a look of suffering on his face. This face was new and I immediately felt nausea. Sometimes I think I am actually going to vomit on the floor of the NICU when I see something I don’t like or hear something unnerving. I know I will not let this happen but it doesn’t make the strong sensation go away.

Dr. Jones let me know that something had happened to trigger this distress but the diagnosis was unknown. X-ray was on the way to snap a photo of Grey’s chest to confirm all his tubing was in place. Besides his anguished disposition, all his numbers were reading high. His heart rate was significantly elevated and his oxygen level was set at 80% (this is usually between 35-40%). Grey was letting the vent do all the breathing. Again, helplessness… I wanted to scream- something is wrong! I also wanted to call Matthew but I didn’t want to upset him and I couldn’t decide if I was overreacting. After reviewing the x-ray images Dr. Jones explained that everything looked right. The solution was to sedate Greyson. Was it possible he was simply having a bad day? Besides the bad day idea- Dr. Jones explained that Grey’s chest x-ray from earlier that morning did not look good. His lungs are still inflamed- meaning either lung disease, infection or too much fluid- we don’t want any of these. Furthermore, the doctors have decided to try a new medicine. This is the same form of respiration medicine that was given to Grey when he was first born. A baby born at 25 ½ weeks or 26 weeks has not produced surfactant, a chemical that helps keep the lungs inflated. So Greyson is receiving an artificial form of surfactant. I took this information and felt a tiny sense of hope. Hope- looking forward with reasonable confidence. I have learned that with a clear action plan, I have a stronger sense of hope. I sat quietly in the NICU rocking chair with enough hope to calmly pray. Greyson’s nurse, Carlye, attempted small talk and I decided to give in. We chatted and I immediately liked her. I like and appreciate all Grey’s nurses but there are always a few I feel a closer connection with- meaning these women create a sense of reassurance and have the ability to instill confidence- Carlye is one of these nurses. Matthew and I hope to see her again soon. Speaking of Matthew, when he arrived after work he was also concerned- I didn’t even have to say a word. He flipped back Greyson’s incubator blanket and immediately said “he looks different- what’s wrong?” At this time, Grey looked different in another way- this was a look of sedation. I explained the sequence of events and he too had a few questions for Caryle. We left the NICU that night talking about the new medicine and hopeful that tomorrow would be a better day.

Update Today

Matthew and I visited Grey today and his mood was better. He still looked a little sedated but I’ll take a dazed expression over anguish any day! His numbers were reading better too. We haven’t received an update on his chest x-ray images but I’m thinking there isn’t an update yet- the medicine probably needs time to work. I don’t want to include every single detail of our visit b/c I have written too much thus far. However, we left the hospital peaceful. Matthew wanted to stop by the mall, where he purchased a zebra toy for Grey from pottery barn kids. He had already researched this toy online. I love the idea of him browsing baby websites and taking notes.


Ellen said...

You can NEVER write too much. Every word connects us to you and Matthew and Greyson. We need that connection. We can't sit with you in the NICU and every one of us wishes we could. We want to be there to support you when you think you can't hear another bad report or watch your baby suffer. This blog is the only way most of us can walk with you. Thank you for using your precious energy to let us be a small part of this huge fight. I could not be prouder of you or love you more.
Aunt Ellen

Robbie said...

Kiley, thank you for writing to all of us. It is very therapeutic for your family and friends. It keeps us in check to remind us Grey is not out of the woods yet, so our prayers can continue to be fervent. You are doing an amazing job as well as Matthew. I loved what your Aunt Ellen wrote, because I was thinking how amazed I am at your strength and realized your entire family is same as you. God is lifting you up and he has his hand under Grey’s head protecting him. I asked many people at my church to keep you your family in prayers this weekend. I am continuing to pray for Grey and all of you.

Jennifer said...

My Heart aches for you and your family, I am keeping your beautiful lil boy in my prayers. As a mother it is hard to see your child fight every day , I have been there, I pray your family will grow and become stronger from this, I know we havent stayed close over the years but if you ever need to talk, I am here.
Jennifer Sneed Vance


Kiley I am praying for grey I hope his new meds work. Im praying hard for those little lungs! Prayer is so powerful and there are ALOT of prayers going up to God with everyone Praying. Im
also praying that you will get to hold your sweer baby soon.

Anonymous said...

Kiley, I am praying for you in this great time of need. I am praying that Greysons little lungs become stronger and that the new medicine works a miracle. Prayer is going up from everywhere and I think speak for everyone when I say that we are praying for Greyson and for you strenght as well.
Lindsay Langley

Joyce said...

I pray that Greyson will become stronger and healthier each day. You, Greyson, and Matthew are constantly in my thoughts and prayers. Thanks for the updates. I continue to check each day and am trying to patiently wait for answered prayers!


Lindsey said...

hey kurvy, i wrote you and matthew and grey in as a prayer request at world outreach chruch yesterday, its a huge church so that means lots more prayers to contribute! every little bit helps i think :) i'm glad to hear he had a better day, stay strong and know we are all here for you! and if you want to grab lunch or dinner puff and i are ready when you are. love you!

Anonymous said...

Your family and little Grey have constantly been in my thoughts and prayers. I can not even begin to understand what you are going through so I thought I would give you some encouragement. My cousin Chase was born at 25 weeks. He weighed 1lb 8oz, and stayed in the hospital until his due date and then got to come home. Today he is 12 years old. He is the pitcher for his Little League team and is completely healthy. See this is what you have to look forward to! Grey is so beautiful and so lucky to have parents like you and Matthew. If you need anything I am only a phone call away.
Jessi McNail

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