...most likely within the week...

Blessed Immensely

Dear Zachary,

God has blessed Stephanie and I immensely by giving you to us as our son. Our time with you now is very short, and Daddy and Mommy are feeling the waves of melancholy come our way. We are now grieving and preparing for impending loss. Zachary, know with highest certainty that we will battle against any feelings of despair. Far be it from despair is the Good News that is the Gospel which means that you will be with Jesus soon. Zach, you will be with God forever, and ever, and ever, and it will be so great and so wonderful for you to experience this fellowship with Him that we won't focus much on what this life here did not give you, but sing praises of joy to God for what is coming your way through Jesus. Enjoy sweet fellowship and worship with Him, our precious little boy, and one day we'll meet up together. Daddy and Mommy are looking forward to that day, whenever that day shall come.

Love,

Daddy

Apologize

I first want to start by apologizing. I've realized about myself that I have a hard time giving someone bad news when I'm speaking with them face to face. I am so bad at this that I have lead people to believe that Zach is doing better than what he is. I think that part of the reason that I do this is because I'm afraid that if they knew the truth they might regret ever asking.

So here is to being truthful...yesterday (Wednesday) was hard. It started out "normal" for us. On Tuesday our doctor was worried that Zach might be silently aspirating so she had us slow down his feeds to 100 ml/hr. (7 oz bottle would take more than 2 hours to eat) But on Wednesday about 1 hr into his breakfast, I heard him aspirating. (liquid going into the lungs) I immediately stop his breakfast, called hospice at 9 AM, and waited for them to come. Poor Zach was just so uncomfortable. I knew this was bad. It took some phone tag between the on-call nurse and our nurse but she finally arrived at 11:30. She helped me to make sure his ng tube was placed correctly ( I was way too rattled to do it on my own.) Then she began to remove the air in his stomach that she had put there to place the ng. What she found instead was half of the breakfast that Zach had been given 2.5 hours earlier. Not good. Zach's digestive system is starting to shut down. His stomach had been so full that it had begun to overflow into his lungs. As soon as the nurse removed the contents from his stomach he was completely relaxed. It was decided yesterday to move Zach onto pedialyte only. Even on pedialyte it is still taking Zach about 4 hours to absorb 3 ozs.

Craig and I suspect that before the end of June, Zach will be ushered into heaven.

We have been trying to prepare Aaron for this. I would say that yesterday was the first time that he understood that Zach is "broken".

So Good!

It was fabulous being able to spend time with my Grandma and Aunt Donna for a few days. It was such a blessing for them to be able to come out from British Columbia to meet Zach and play with Aaron. And what is more important than cuddle time?!

Some slips downhill

For the past few weeks, Zach's breathing has become more labored. We are not sure what is causing the breathing difficulties, perhaps cardiac issues. He will inhale, hold his breath for a few seconds, and then exhale. It is/was quite scary to watch because during those pauses you are afraid that he might not exhale again.

He was clearly not comfortable so we have increased his Morphine and Valium hoping that it might help him relax while breathing. He is also now on oxygen most of the time. Let me tell you that those oxygen converters are loud and put out a lot of heat! At night we can't keep it in his room because his room becomes like a sauna, so we run tubing from the main floor up to his room.

I have to continually remind myself that his comfort is more important than my feelings. At this point for Zachary his breathing is most relaxed when he is somewhat sedated. Another step in this long good-bye.

Aaron (our 2 1/2 year old) is doing so well. I have been wondering when is the right time to tell him that Zachary is a very sick boy. He has no clue right now that Zach is different than other babies. Don't all babies eat with a feeding bag and have medication administered every 2 hours? I want to prepare him for the roller coaster that he is going to be riding. As a mom I am more concerned with how Aaron will and is processing all that will be happening than I am about myself. I want to be able to save both my boys from suffering, but I can't.

Long term or short term

The planner in me of late has been struggling with the big question mark that is Zachary's life. I feel that I have to prepare myself emotionally for Zachary being with us for a very short time, but the reality is that we really have no idea how long he could be here. It could be weeks or years.

I guess I'm just not sure how to proceed with my life. I hate to say it but I feel like I am in a holding pattern.

We had a wonderful day as my grandma and aunt are in town from the west coast of Canada! Unfortunately Zach had another spell of infantile spasms today, and we haven't seen any in weeks. Very disappointing. I can't write a lot today as I am working on getting packed for a trip out to Bethlehem, Pennsylvania to visit my brother! I hope everyone's weather is as gorgeous as our is today!