Grayson didn't have a very good night. He will not take a bottle so we had to have a tube placed through his nose into his stomach for feeding. He is not tolerating his feedings at all. For a baby his size he needs about 20 cc of formula every 3 hours. Unfortunately he is only keeping a few cc's down.
It's afternoon now and Grayson is doing OK. Dr Hall, a neonatologist, suggested we increase his oxygen from 1/2 liter to 1 liter. All of his breathing is unassisted, but without oxygen his o2 sats are 80%; which is not good. His color looks much better on the extra oxygen.
We keep hearing rumors that we might be able to go home today, but there is so much to get set up. It has always been our wish to take little man home no matter how sick he was. Home is a much better place for him than the hospital. Before we can leave we have to have oxygen at home and hospice needs to be set up. Every time I say Hospice thinking about our son it makes me cry. Hospice is supposed to be for someone who has lived their life not someone who is just beginning to live.
Kristi and I decided that we would celebrate everyday of Grayson's life as a birthday. We got this idea from Eliot's parents in 99 balloons. Eliot was a little boy with Trisomy 18 who lived for 99 days. His parents are amazing and did a wonderful video and posted it on youtube; 99 balloons. So everyday at 1208 pm Grayson gets a gift for his daily BDay... just so happens he is a huge fan of monkeys.
HAPPY 1 DAY BDAY GRAYSON. The Sock Monkey is your first monkey gift.
By late afternoonLittle Man started tolerating about half of his feedings. Word here is a hospice nurse from Arkansas Hospice will be to the hospital to get us set up and the folks with the oxygen will be here by 3.
After a few hours and a long long time pacing the floors.... GRAYSON THOMAS THOMPSON is going HOME!! We had our car seat test, hospice is set up, and we have a nifty little machine that will make all of Grayson's oxygen.
We made it home a little after 6pm. No matter what happens from here out, Grayson will live his last moments surrounded by family in our home. We are so proud of you Little Man!
EVERY Child Deserves a Mother
6 years ago
8 comments:
That's awesome!! Grayson you are a blessing :)
Congratulations on the birth of Grayson!!
God has answered our prayers and Sweet Baby Grayson has made it home with his mommy and daddy. I will continue to pray for you. Cherish each and every day with your sweet son.
He is beautiful and perfect in every way!
God Bless Grayson.
With thoughts and prayers,
Stacy
He is so absolutelty beautiful. What a true miracle he is. I am crying tears of joy for you that Grayson is going home!
Praying for your family in California,
Nichole
What a wonderful answered prayer to get to take your sweet baby Grayson home! The slideshow of his pictures is the most beautiful thing I have ever seen- what a wonderful gift to cherish forever! My thoughts and prayers are with you and your family daily and your faith and strength amaze me.
God's blessings to you all,
~Iana Ham
Grayson I love your sock monkey! You are one lucky little boy ahd your mommy and daddy just love you to pieces. Praying for you hon!!!!
I love the pictures, they are priceless. I had so many favorites by the end of the slide show I lost track of them. It's so good to see a smile or you and Taylor's face.
Is his hair brown?
Praying for you all!
Praise God!.. I am so thrilled for your family! We serve an awesome lord!
I'm so glad to hear that Grayson gets to go home! You have been in my family's thoughts and prayers. We had hospice for Lily, and I must say that they were wonderful resources and support. They helped relieve a lot of fears and answered a lot of our questions. Hospice has such a negative connotation, but I really found it a beautiful, comforting experience.
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