Two tickets please… for the roller coaster ride.
So I am slowly learning that Matthew and I are going to have continuous ups and downs with Greyson. The nurse practitioner said today that “we are definitely on a roller coaster ride.” Moreover, the roller coaster ride is to be expected with preemies.
So Greyson is still having episodes and he continues to desat. Matthew and I are still doing very little touching- we do not want to agitate our little man. The first few days I really enjoyed being there during Grey’s care time but now my anxiety level raises during this time because I know it is going to upset him and the possibility of desating is high.
I received a call early this morning that Grey’s feeding tube has to be temporarily removed because he had too much undigested breast milk in this belly and a chest x-ray showed the possibility of fluid- meaning some breast milk may have gotten in his lungs. Dr. Reese would like for Grey’s chest x-ray to be clearer. So today I will pray all day long for his lung development and a better chest x-ray. And I would also like to see his feeding tube placed back- he needs his momma’s nutrients so he can continue his weight gain.
Mom and I visited with Greyson for several hours this morning. He had one little episode with his breathing but it was nothing like the other night. However, I still worry. Sometimes I find myself wanting to make unreasonable request like… can I have a nurse just sit next to Greyson’s incubator all day? I hope the nurses and doctors don’t think Matthew and I are annoying. We have some many questions and now that I am familiar with all the machinery and numbers I question his settings. I find myself saying “do you think his oxygen level needs to be turned down- it has been reading high for the past 15 minutes and I don’t want it to hurt his eyes” Too much oxygen can hurt babies eyes. These nurses are wonderful and definitely don’t need assistance with their job :). I just want the best for Greyson- like any mother.
I went to work this evening and added Greyson to my insurance. I have received two letters urging me to do this as quickly as possible due to the urgent critical matter. It was really nice seeing my friends. I am still weak and many times the pain is still strong so I didn’t actually make it upstairs to visit with everyone. Tomorrow I go for a check-up and I might get my stables removed!
Well, tomorrow is another day and I pray for a better report. Thank you all for your prayers.
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9 comments:
Kiley...its skinny-leg...tina IM-ed me this blog, i am praying for you and greyson! my mom and i just got off the phone and we prayed for you and matthew bead and baby greyson! by the way, he is really really cute!! if you need anything call me... love you lots! you are in my thoughts and prayers...
heart- skinny
ps- i've missed you
Kiley,
I will pray for Grayson and mom & dad because I know that you are definitely going through a hard time right now. Just know that he is a strong little boy and he will be just fine. God will see him through this. I have an understanding of what you are experiencing. Just know that Grayson has lots of love, support and prayers. Just try and keep up your strength during this difficult time. I know how you feel and how you want to be by his side every moment of the day and the thought of you leaving for one moment just drives you crazy. I know that you are even afraid to fall asleep at times because your anxiety takes over about what he might do during that second you close your eyes. Could that nurse/doctor get to me quick enough? I know how you want support yet you want to be the left alone while you concentrate all your attention on your child. Just know that I have sat in your shoes. The pain of uncertainity from day to day can become almost unbearable. Just take a second, open up your heart and mind to God, say a prayer and tell Him to take over - take Grayson in his arms and heal him. I promise God will heal your little boy just like he did mine. I pray that the stress of it does not take its tole on your health. My heart is hurting for you. If you need anything - want to talk, cry or scream - just let me know. I am here for you. Your Friend, Pamela
Kiley...I am so glad you set this up to update on your little man, I have been thinking about you guys and praying everyday. I can not even begin to imagine the amount of "helplessness" you are going through, but as a mom I know how hard it is to leave your child in someone elses care. You just have to know that he is getting the best care he can get and he is in gods hands. God will heal your baby boy and when he does you will have a lively, fun filled life with your beautiful little miracle.
Please let us know if you need anything. I will be praying for you guys everyday.
Take care of yourself.
Brandi Johnson
Kiley
This is Sarah Hurst. Brandi sent me your page. I was at a loss of words when Brandi told me what was going on with your family and I just wanted to tell you that I am thinking of you and I will pray for him every chance I get.
Kiley, I feel your pain, and I know what you are going through... It is definitely something that you fan not describe unless you have been there. It is the most stressful time of your life. I had preeclampsia also and had my daughter at 33 weeks. It is so hard, but it is a blessing that these tiny babies are such fighters. You are in my thoughts and prayers as each day goes and your heart grows stronger as does your little boy! May god bless you and your family!
Lindsay Langley
Kiley,
I just wanted you to know that he is precious and God is holding his hand through all this. He is like the miracle baby. I know what you are going through where I work I see parents go through this all the time and my heart goes out to you and your family. Greyson has been strong and he seems to be a little fighter. I am praying for you guys if you need anything let me know.. Maggie Goolsby Hancock
EMILY,HALEY,and TAYLOR LOVE GREY!!!!!!!!!!!!!!
Hi Kiley, Matthew and Grayson!
I just wanted you to know that Justin, Gavin and I are thinking about you and your family. If you ever need anything.....really anything, I am at Vandy 5 days a week. (931)580-9291. Good luck and lots of BIG HUGS!!!
Corbin Whitwell
Kiley, Matthew, and Greyson,
Hang in there...life holds no promises, but you are doing the right things, but you are praying and asking for prayers and Greyson is fighting with courage!!! Elise and I pray everyday for your little man to come home to you and Matthew. Thank you so much for sharing your pain, joy, and your bundle of joy with us. It will help us to continue to lift Greyson up in prayer. I am so thankful you and Matthew were put into Greyson's life. Lots of hugs and kisses to Greyson!!
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