Sunday, January 22, 2012

Baby Peter: Days 23-36 Update

by Tracy on Tuesday, November 8, 2011 at 1:16am

November 7, 2011 Days 23-36

Happy five week birthday, Peter!

It’s been kind of a crazy two weeks.

Wednesday night (Oct. 26th) Zach and Lucy went to our church’s trunk-or-treat.  On Thursday Lucy woke up from her nap and had gotten sick with the flu, which I suspect she got at the trunk-or-treat the night before. Luckily is seems that it was only a 24 hour bug. On Saturday we had family pictures taken by one of the hospice workers.  I hope they turned out, and can’t wait to get them back!

On Monday was Peter’s four week birthday and his first Halloween! The hospice worker visited and noticed that peter's capillary refill in his feet was slower, and that he has been showing some possible signs of neurological problems, indicating that his brain isn't working as well as it should. She told us to keep our eyes open for possible seizures. That night Zach came home early sick with the flu and was sick all night. The next morning I woke up at 6am to feed Peter, and got sick myself. We called a friend of ours who came over and took care of the babes and us while Zach and I were both sick in bed all day. Luckily Lucy had already gotten the bug, and our friend was able to take care of Peter so that we didn’t have to touch him and contaminate him too.

The next day, Wednesday, was my 26th birthday! I spent it by sleeping all day and recovering from being sick the day before.  Thank you to Zach for watching the babies all day so I could sleep. The hospice worker visited again and saw that Peter’s capillary refill was even slower, and his skin was mottled in color. His bowel movements haven't been as regular either, so she thinks that his digestive system is starting to slow down as well. 

All of these things indicate that we have started down the path of his deterioration of health. Zach commented to her, "So he probably won't make it to Christmas then, huh?" to which she replied, "No. I don't think he will make it to Thanksgiving even." That was kind of shocking to hear her say, even though we knew that was a possibility. 

It was really hard to hear her say that, but I am glad that we at least know that is where we are at in the progression towards death so that we can mentally, emotionally, and physically prepare for it. She suggested that we start working on funeral plans.

Thursday was Peter’s official one month birthday! I noticed that his color was paler over all, but still hadn’t seen any seizures and on Friday the hospice worker came again and said that Peter’s capillary refill in his feet was the same as before. So, that is good. On Saturday Zach and I got a babysitter and went to the funeral home and cemetery and started making arrangements there. It was a very emotional day overall, but it feels good to have a plan and have started the process and be prepared.

Which brings us to today, Peter’s five week birthday! The hospice worker came this afternoon and said that Peter’s feet are still the same and his skin isn’t mottled anymore, but he continues to be paler overall in color. I asked her again today what her experience was for the longest that a baby, that she had cared for with Trisomy 18, had lived after starting to have profusion problems (capillary refill, and mottled color, etc.), like Peter was having. She said that the longest was three to four weeks after the first day of profusion problems started. So, that gives me a time frame and mind set so I can be ready emotionally.

Hopefully we can have more time that just three more weeks with Peter. I’ve been pretty emotional the past few days as we’ve been spending time together with him, and trying to prepare for his death. It was hard to hear that he probably won’t be here for thanksgiving and took me a few days to be ready to write about it and let the world know that his health has started to decline. It’s a lot harder to write an update when the news is bad.

We've been blessed with a great support system that has helped us through this whole ordeal, and taken care of us while we've been sick. I've been thinking a lot about all the things I have to be grateful for, and all the blessings Heavenly Father has placed in our lives. Despite this sad circumstance, I have a pretty wonderful life. I have a beautiful family and home, a wonderful marriage, the Church, wonderful friends and family, financial security, our health, and a strong foundation and relationship with the Savior and our Heavenly Father. I'm grateful for all the large and small blessings in our lives, including Peter. He is a darling, and we are enjoying, and are thankful for, every day we have with him. 

Ready for Trunk-or-Treat

Family Picture Time

Happy Halloween!

Happy Four Week Birthday!

Snuggle time with Dad!

Giving Peter lots of love.

Happy Five Week Birthday!

Lucy giving a congratulatory pat to Peter.

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