Thursday, December 27, 2007

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."

10 comments:

pipsylou said...

Yvette - this blog is such a blessing to so many, and so are you and your entire family! We are holding you up in prayer this very day!

Rachel, Scott, Lucy and Asher
www.caringbridge.org/visit/lh

Laurie said...

Yvette,

My heart hurts for you as I read your words of honesty and emotional tenderness here. These are the days that the Lord is carrying all of you. One set of footprints, you can put your complete trust in Him. And you can own your emotions as they are right now, knowing it will not lengthen nor shorten the plans He has for Tristan. I am glad to hear you had a good cry and let out some of the anxiety and emotions in your heart. It makes more room for love. Praying for peace and hope for you and strength for Tristan to face another day.

Love, Laurie in Ca.

So Blessed said...

I'm so blessed by your faithfulness...and thankful that you find your refuge in the shelter of His wings. There's no safer place to be. That is where you find true peace. I'm thanking God for blessing your family with precious time with Tristan. He is holding each of you in His loving hands...

Granna said...

Still praying in Alabama

Anonymous said...

Hi! I have been reading your blogs since before Tristan was even born. I also kept up with Poppy Joy's blog. I stumbled amongst these blogs and I have no idea how. I am glad I did though. Reading your stories have given me a new perspective on life and how to live in the now. I have a son diagnosed with cystic fibrosis at the two weeks old. I understand partly the way you feel as my son was near death once at 11 months old (he is now 4). I never thought I would find myself with a child diagnosed with an incurable disease. I understand that our circumstances are different. However I can so feel your pain when I read your posts. Please know that you are in my prayers and your precious Tristan.

Rebecca said...

You are loved, Yvette. Hugs to you... prayers, too.

unci said...

My Dearest Yvette: As I sit here in TN (so far away from all of you), my heart breaks and tears roll down my face at your descriptive words of pain and heartache over our precious Tristan. I, too, have times where I beg our Lord to give us more time. Yet, I know He has a plan and is in control. My memories of those nights ya'll honored me with by trusting me to watch over our little miracle are so precious to me and I cling to them (praying over him as we began our time together each night; singing 'Jesus Loves You' when he was restless; touching and holding his little face and head; memorizing his perfect little features; nuzzling his little neck for his sweet baby smell; and trying to give him a lifetime of love in such a such a short time). Again, thank you, thank you, thank you from the bottom of my heart for this gift of time. My prayers (and Grandma's) are for time, health, and no suffering for our precious Tristan; for wisdom and strength and peace for you to love and care for the miracle God has blessed you with; and for Angels to surround Tanner and Tayden and keep them safe. Thank you both for the time and the loving way in which you share your hearts so freely in your postings; for teaching all of us how to live fully in the moment given; and for teaching us (by your example) how to turn every part of our lives over to our Lord for Him to use according to His Will. I'm loving you all the way into the arms of Jesus where He will keep you safe, Mom

Anonymous said...

And here's the picture I had in my mind for you all day today, when I was thinking how very much you probably need some support to allow you to sleep sometimes.

I read this blog and saw this post and the picture weeks or months ago, but the picture in my mind still makes me smile, of this couple's sweet friend who stayed the night to allow them to sleep without the every-3-hour feedings, and to watch over their baby's breathing.

http://clairecox.blogspot.com/2006/11/necessity-is-mother-of-all-inventions_12.html

Kenzie Stanfield said...

Know that we LOVE YOU guys so much and are praying for you- constantly! We will pray for his coloring and your heart as the Lord decides his path. Thank you for sharing so honestly... your fears, your sadness, but also your continued faith.

Love you!
Kenzie

Anonymous said...

Hello Hostetter Famiily - I have been reading your blogs since the day before Tristan's Birth. We received an e-mail from someone in my church asking to pray for your family and the blog site. I cry as I read what your family is going through. My heart aches as a mother of two precious miracle boys (I was told for 5 years by doctors that I would never have children). I praise and grow in your continued faith in God. As I read today's blog I am reminded that God will take us to the edge of our faith in him but will never let us fall. Holdfast in your faith. Remember the doctors have told you about this disease and what this disease holds for your precious son but they didn't tell you about God's plans for your son. You have made it this far with your boy, don't limit God by the words of a doctors. panokez@comcast.net