We are in our last three days of every night nursing. It has been an incredible week of sleep! On July 1st we'll begin our new schedule of having a night nurse just two nights a week. I'm sure those nights will be the highlight of our week and something we truly look forward to. The nursing agency has confirmed that our favourite nurse is going to be here for both of those nights each week. This is a great blessing, as she'll be very familiar with Hope and won't need any instruction.
Sadie will be turning 2 in July. I find myself thinking about Hope's 1st birthday as I plan for Sadie's 2nd. We had a big party for Sadie's 1st birthday to celebrate her, I can only imagine how overboard I'll want to go for Hope. We felt it was important to invite all the people who had poured into Sadie's life when she turned 1. In order to do that for Hope, we'll have to plan it at a football stadium! How could we ever thank all of the people who have poured into Hope's life? As we celebrate every day we have with Hope, I'm reminded to celebrate every day I have with Sadie too, life is fragile.
We got a call from the anesthesiology clinic yesterday, Hope will be going on August 3rd to meet with them before her MRI in late August. We still don't have an official MRI date at this point. We will be going to the cardiologist on Wednesday next week. Hope will have an echo of her heart done at that time as well. Please pray that everything would be working properly and that her little body would continue to grow and develop as efficiently as possible.
Hope continues to stump her doctors. Her newest trick, has been to vomit stomach bile without losing any breast milk. While putting a feed into her stomach, she'll begin vomiting but manage to keep her feed and only lose bile. They cannot figure out how this is even possible and have no answers for me. The positive part of this, is that she's not losing a lot of volume and continues to gain weight. It's terrible to watch her retching and know that she's so uncomfortable. She seems to settle quickly when the episode is over though. We're hoping her stomach will settle and she won't have this problem for too long.
Thank you for continuing to lift up our concerns and for praising God for our progress as well. We know that your prayers are having a powerful impact on Hope's life, as well as ours. Sometimes it's difficult to understand why God doesn't stop things from happening. We believe He has the power to intervene and chooses not to at times. We have to hold onto the hope that His plans are greater than our own, and that he has a purpose for our pain.
Has an X-ray been done to confirm feeding tube placement? If it was put in too far, as in it's past the stomach and into the small intestines, she could be vomitting/retching because feeds need to run slower if they're directly into the intestines. That would explain why only bile is coming up as that's all that would be in her stomach since her feed would be bypassing it.
ReplyDeleteDear Amy - I loved your post today. There is so much in it that reflects you thanksgiving and trust in God. You continue to draw my eyes towards His plans for you. Praising Him that He is keeping Hope from missing her nutrients even when she vomits. Praising Him that you will have the nurse you're accustomed to. Praising Him that Hope will have the meetings she needs with the Docs and continuing to pray that the next surgery will be so smooth that the medical world will totally understand the intelligent, creative God of our universe. The One who cares for your baby girl and your nearly two year old and who has loved you and Shawn since before you were even born. Hope you slept well last night. Looking forward to good news everyday, and here praying for you when the days are weary and the long nights dreary. Jesus cares!
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