Day 25 - Emotional night

Again we took turns watching Tristan, to make sure the oxygen tube didn't fall down, he slept very well and his apnea monitor did not go off at all. Hospice came today to check on Tristan and said he was continuing to do well. The excitement for today? He has gained 2 oz., we were SO EXCITED!!!! We switched him from pre-mix to powder, per the doctor, because it has more calories which should help him gain weight, so we are hoping the weight gain is due to the changing of the formula mix. Hospice also brought the tape that will hold the oxygen tube on Tristan's face, this will definitely make it easier than holding the tube under his nose all night and allow us to feel like we can close our eyes without being afraid the tube will fall down. As you know from the temporary post we did on Monday, our computer crashed Sunday night therefore we spent most of today recuperating the important things (1000's of pictures). After dinner tonight we were taking pictures (we're picture people, as if you can't tell) and we removed the oxygen tube for just a few minutes, because the cord wouldn't reach across the room, and Tristan's color started fading to pale white and then gray. We quickly used the "blow by" on level 8 and it took more than 5 minutes for his color to return back to normal. After his color stabilized we decided to end the picture taking, take him upstairs and put him in bed with us. Obviously with all of this, it was the beginning of a very emotional night for me. As we sat in the bed holding Tristan I was crying like I haven't cried since August. Although I have had some emotional moments, overall I have really been strong since September so I guess tonight was the night ........ all the emotions hit me at once and they were so mixed. Emotions of gratitude that the Lord allowed Tristan to be born alive, thankfulness for the Lord giving us so much more time than we ever expected, complete fulfilment as I held my 3rd miracle baby boy in my arms, in awe as I looked at him thinking he looks so normal (and so much like Tanner when he was born), guilt for being so selfish because I want MORE TIME, sadness as my heart was crying out "this isn't fair, I can't do this, I can't let go of him" and reality - the gripping reality of this disease which means we only have Tristan for a short period of time. When I found out I was pregnant I felt like our family was so complete with Tristan and yet the reality of this completeness is temporary, which is so hard for me to accept right now. I know without a doubt that the Lord, himself, chose us to be Tristan's parents and for that I am grateful and I also know THIS is our story, the Lord's plan for our life, however, it's still hard because everything is great with us and our family of 5, the day-to-day is so much fun, we feel like a normal family, we are definitely living in the moment and enjoying every day to the fullest and most of the time I honestly forget the reality! However, I am reminded, and those feelings are quickly shattered, when Tristan starts changing colors like he did tonight and I get scared that maybe this is it, maybe this is the end, maybe tonight is the night and it's heart-breaking because I am not ready to let go and know I will never be ready to let go - what mother would be? It was one of those emotional nights that you want to crawl under the covers, go to sleep and wake up the next day and it be better. Although I could not crawl under the covers because Tristan was laying beside me, I did lay beside him, rubbing his little face, praying and asking the Lord to give me the comfort I need as I am being flooded with all of these mixed emotions, I need to enjoy and concentrate on the "here and now" and not be caught up in the sadness and reality of this disease. Please pray for Tristan's color change, please pray for Tristan's continued strength, please pray for me and all the emotions I am feeling right now and please pray for us as we face another new day tomorrow.

Psalm 61 says: "Hear my cry, O God; listen to my prayer, From the ends of the earth I call to you, lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings, For you have heard my vows, O God; you have given me the heritage of those who fear your name. Increase the days of the king's life, his years for many generations. May he be enthroned in God's presence forever, appoint your love and faithfulness to protect him. Then will I ever sing praise to your name and fulfill my vows day after day."