Search Results: hope

Hope Serena Daley is born!
May 31, 6:50pm 9 pounds, 11 ounces 22" All is well, praise the Lord of Hosts!   ‭Romans 15:13 KJV‬ Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost.   (More)
Posted by joyful on June 2, 2024, 9:06 am
Category: Pregnancy, Hope
Day +55
We went back to the clinic in the late morning after Grace threw up her NG tube.  She did manage to take her meds by mouth that morning, but she doesn't really like it.  They had tested her stool when she had so much diarrhea at her appointment the day before and it did come back... (More)
Posted by joyful on April 3, 2024, 8:44 pm
Category: Grace
Apartment Life
We are settling into our second week of being full-time in the apartment. Our schedule consists of: Adminstering meds 3 times a day and then washing all of the syringes and straws and flushes Keeping her central line clean twice a day ( Boston Children's says cleaning twice a day is... (More)
Posted by jondaley on March 26, 2024, 9:13 pm
Category: Grace
Hospital Time
We've probably said it before, and anyone who has been in a hospital for any length of time knows that any time someone says "soon" that means 2-10 hours, and "tomorrow" means 1-3 days, etc.  So, even though I posted here that it could be Friday, I've been telling myself Monday, though as... (More)
Posted by jondaley on March 15, 2024, 6:34 pm
Category: Grace
Day +27
Grace had a great day today, despite staying up until after midnight (I went to sleep, but I asked the nurse in the morning, and she stayed up reading her new book and trying to not let the nurses check her oxygen levels since that would involve taking away her light...) She came to rounds in... (More)
Posted by jondaley on March 6, 2024, 11:34 pm
Category: Grace
Day +26
We have lots of good news to report. Grace has been improving the last couple of days.  Her abdomen measured 53.5 cm, the smallest it has been in weeks.  They have changed her cyclosporin from IV to NG (nasogastric) which is a step towards getting ready to be discharged.  The... (More)
Posted by jondaley on March 5, 2024, 10:54 pm
Category: Grace
Pain and Poop
The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an... (More)
Posted by joyful on February 28, 2024, 7:52 am
Category: Grace
Quick Update Day +15
Please pray for Grace's intestines to heal. The doctor is concerned about her continued diarrhea, and so stopped all formula feeds for a few days. She's getting all her nutrition through IV. She will eat bites of things here and there, but is not really taking things by mouth either. This is... (More)
Posted by joyful on February 23, 2024, 9:11 pm
Category: Grace
Day +12
Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for... (More)
Posted by jondaley on February 20, 2024, 7:52 pm
Category: Grace
NG tube no fun
I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the bed. In the morning, it was only raining Jeremiah and I had leftover pizza for breakfast, and we walked to the hospital in the rain. The nurses and child... (More)
Posted by joyful on February 14, 2024, 7:45 am
Category: Grace
Better but hard
Day +4 Grace has not thrown up at all today! She even had an episode where she ate too much macaroni at once, and was able to spit it out without actually throwing up. She does have evidence of the mucositis in her intestines, and a little bit in her mouth, but that part is doing pretty... (More)
Posted by joyful on February 12, 2024, 6:08 pm
Category: Grace
Wanting to eat but not keeping it down
Days +2 and +3 have been full of desire for eating but not the ability to keep it down. Also, bare bottom and oxygen blowing has been keeping the diaper rash from getting worse, and it might even be a bit better.  She has lots of diarrhea.  She has been sleeping a lot. She had a... (More)
Posted by joyful on February 11, 2024, 2:23 pm
Category: Grace
Day 0 - My Blood For Yours
My place beside you, My blood for yours, Till the Green Ember rises, Or the end of the world! One of our favorite series is The Green Ember, by S. D. Smith . Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and... (More)
Posted by joyful on February 8, 2024, 8:13 pm
Category: Grace
Day 0 - Waiting
Faith's surgery went well. Her vitals stayed stable the whole time and they are all happy with how it went. She said coming out of anesthesia was just like waking up in the morning only she couldn't lift her head at first. Jon went down to be with her and I stayed with Grace. Grace threw up... (More)
Posted by joyful on February 8, 2024, 2:24 pm
Category: Grace
Day -1
I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to... (More)
Posted by jondaley on February 7, 2024, 12:24 pm
Category: Grace
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