This has been a week of ups and downs, no surprises there. Saturday night she did an incredible job with her O's. Sunday was a day filled with record high CO2 levels and reintubation for a blocked tube (mucus build up) along with other various issues. Monday her CRP was back up but they were waiting a day or two to see where things went. Monday night her CO2 was through the roof again but this time there was no obvious cause. Adjustments were made, repeat blood gases taken and no improvement. We went home to tuck Annie into bed and planned on having one of us return if she did not turn around.
While I was tucking Annie in Steve said "Honey, you have to come see this rainbow!" I picked up Annie (it would be very poor parenting to deprive a child of a good rainbow sighting in favor of sleep) and we all went outside. Once again during a time of great worry we were given a gift in the sky to remind us of the wonders of the world. The phone rang an hour later and Natter's CO2 had come back down so much that they were able to return her vent settings to where they had been.
My niece is visiting this week to help with Annie so I am getting extra time with Natalie. Yesterday she had a very stable day and everyone was pleased. I changed 3 poopy diapers and helped with taking her temp, etc. That is about all the physical contact I get with her and I treasure each bit. The nurse sent us home telling us to celebrate that she was doing so well and that we could have a night without worry. Hah! By 8PM she was going up in her Os again for no known reason and had difficulty through the night.
That has been our week. We have another care team meeting this afternoon. We are talking about trying another round of nitric oxide therapy if she does not improve on her own in the next few days. It is not normally used when there is no evidence of pulmonary hypertension but we are desperate so it is worth a try. We are also making arrangements for another hospital to consult on her case.
Thank you for all the support, comments and cards. We are blessed as a family to be surrounded by so much love.
I saw the rainbow on Monday too and thought of you guys.
ReplyDeletewe saw a rainbow in maryland monday as well.
ReplyDeletethinking of you all.
What a gorgeous photo! I sure hope you were able to take a deep breath and treasure the moment and that it gave you a little more strength to keep going.
ReplyDeleteWe didn't see the rainbow here in Arizona =) but always thinking of you from way over here. Much love, Wendy
It was so nice to see you, Steve, and Natalie! We will definitely have to get together. Sending so much love and lots of prayers your way!
ReplyDelete~ Keri
hello,
ReplyDeletewe are worlds apart but I feel you are right in my heart. I have had PPROM since 15 weeks and it has been a roller coaster if there ever was one. I am currently 25 weeks and coasting right along with our new baby girl. I have looked and looked on the internet, gotten so much HOPELESS information that I believed we have or had lost all hope. Then I found your page, what an encourgement you have been. My husband and I have said from the start that we would keep this baby no matter what because that is the Lord's will. It is not our choice when to say goodbye to her it's His and now I know that there might be hope that she will live and run and play with us. So thanks I will be reading your post often and look forward to your updates. I will be praying for you and your sweet family. Thanks again!
This comment has been removed by the author.
ReplyDeleteI know it seems slightly stalkerish, but I found your blog through another, which I can't remember as it was linked from yet another, and felt that I had to read it. 4 hours later, I have read from the oldest to the newest, and feel so glad I did, for, as bad as things may seem, when you look back, it's far better than it could have been.
ReplyDeleteGrow healthy and strong Natalie Evelyn, you've got people on the other side of the world rooting for you.
Evelyn