by Tracy on Sunday, October 9, 2011 at 3:17am
After discussing it with Peter’s doctor, talking about it together, and praying about it, Zach and I have decided not to pursue any surgeries for Peter. While it might extend his life a little longer, it would not solve the main problems, and would be a strain on his tiny body, cause him pain, and he might not even survive the surgery. Our focus right now is making Peter’s remaining time with us as happy and comfortable as possible. We are still waiting for the final genetics test results, and won’t expect them until after the weekend.
Yesterday, Friday October 7th, at around 6pm they took out my belly staples, gave me a flu shot, and I was officially discharged from the hospital. My sutures look great, and I seem to be healing nicely, although walking for any length of time makes my lower abdomen start to burn significantly and I have to find a resting place immediately.
After being discharged I went to say goodnight to Peter and let him know that I wouldn’t be visiting him that night, and would see him the next day. It was so hard to say goodbye for the night and leave him! Zach and his dad, Greg, picked me up and we went home for the night. As I was leaving the hospital I became very emotional and sad as I thought about having to leave the hospital without him. You just don’t imagine a scenario where you are leaving to go home, and you don’t have your precious baby with you.
I missed having my midnight visit with Peter and it was hard to not feel a little guilty about leaving, but I also knew that I needed to rest and take care of some other things at home, which included being a mother to Lucy and spending time with Zach outside the stress of the hospital.
I spent some much needed time at home with Lucy, showered with actual water pressure, and slept in my king-sized memory foam bed. It felt so great. My body was still exhausted from delivery and the stress of the week. It was really good to be home in comfortable surroundings and just relax, catch up on sleep, and spend some time with family and friends. We had Matt and Crystal (and their baby) over to play a few games with us and Zach’s parents. It was fun and the whole evening was just a nice distraction from reality. There were moments where I actually forgot what was really happening in our lives right now. It felt good to just have a break.
This morning Zach’s mom, Kay, took care of Lucy so we both got to catch up on rest and sleep in. I so needed it. We spent the morning slowly getting ready for the day and Kay made us eggs and bacon before we headed back to the hospital at 2pm. Fortunately the hospital was able to allow us to Room-in, which means that they let us use an extra room they have so that I don’t have to drive back and forth as much, which makes it easier to provide breast milk for Peter and spend as much time with him as possible. What a blessing! I am no longer a patient so they don’t give me my medications anymore, don’t bring meals to my room, and don’t come and check up on my needs. They do provide me with free meal vouchers for three meals a day while I am at the hospital. We want to make the most of the time Peter has with us here on Earth, and the hospital has been wonderful in helping us make that happen. We can come and go as we please, and use the room as a home-base. We can spend the night in there when we want, or just spend the day at the hospital, and go home at night.
I am back at the hospital now and plan on spending the night here and all day tomorrow. We really just take it a day at a time when it comes to planning who will be where and what we will be doing.
Peter has actually been making some progress. He started out at a 6 for oxygen, and the doctor has been slowly decreasing it the past two days. Peter is currently at 2.5 and has shown no problems as they have made each adjustment to his level of oxygen. They attempted weaning him from the oxygen a few days ago and had to put it back up because he did not respond well to it, so it is encouraging that he is doing so well this time around. Part of the reason he is adjusting better to each reduction of oxygen is the lasix he has been taking, which helps eliminate moisture in his body and helps him breathe easier.
When I came back in to the hospital this afternoon his doctor checked in with me and gave me an update on last night and this morning. Peter gained an ounce last night! :D I was very happy to hear that. They are also continuing increasing his feedings, and have switched to a lower amount of fluid with a higher concentration of calories so that he burns less calories eating and also to keep the amount of fluid in his body low. Greg, Kay, Zach, Lucy and I were all able to visit Peter today, and Lucy even patted him and gave him kisses on his forehead. It was wonderful to see her being affectionate with her baby brother and showing him love.
This evening Zach and I spent time with Peter telling him all about ourselves, and his big sister, Lucy. Zach has also been teaching him the gospel and missionary discussions, and we sang primary songs to him together. It is really touching to share these precious moments with him, and share the things that are important to us- the things we wish we could spend years teaching him and telling him about. Even though right now he probably remembers and knows more about these topics than we could ever teach him, it is nice to be able to tell him our feelings about them.
We talked about gaining a physical body, Jesus Christ and the resurrection, the temple covenants Zach and I made, eternal families and him being sealed to us forever and how we will never do anything to jeopardize that. We promised him that we will stay true to our covenants so that the promised blessing of an eternal family will always remain in force, and he will be ours forever.
Peter’s sweet spirit has filled our family with love and we count ourselves extremely blessed and lucky to have him as a part of our family.
|Peter holding onto Mom.|