Sunday, March 23, 2007 8:56 PM: Resurrection Day 2008!

Blessed Resurrection Day to each of you, our dear friends and family,

In Christ alone – my hope is found,
He is my light, my strength, my song;
This cornerstone, this solid ground,
Firm through the fiercest drought and storm.
What heights of love, what depths of peace,
When fears are stilled, when strivings cease!
My Comforter, my all in all,
Here in the love of Christ I stand.

From “In Christ Alone”

Jace is still with us and is stable. Lauren and Dan have had the privilege of holding him (tubes and all) every day of his life. He seems to love their loving of him as his vitals are even more stable while in his mother’s arms. Today, Madelyn and I went into the level 3 Neonatal ICU (NICU) to be with him as Lauren and Dan left to eat a quick sack lunch Lauren had made. Jace seemed agitated and was ‘crying’ although we couldn’t hear him, since he has the trach tube from his respirator running through his vocal cords. His eyes were open, and he was obviously looking for someone, and we were not what he wanted! By rubbing his little body and head, we were able to quiet him, and he drifted off to sleep.

Although he is being fed nutrients intravenously, he has lost weight and is down to 3 pounds 7 ounces. Lauren is pumping and saving breast milk in hopes of being able to have her milk administered to him at some point. We’ve not heard any more about his kidneys, but he’s active enough that last night he pulled out his catheter which drains his bladder! At this point, the constriction in his urethra is preventing him from draining his bladder completely on his own, so he will continue to need the catheter.

The hardest news came on Friday. We expected it, but for all of us, especially Lauren and Dan being told by the geneticists that Jace’s preliminary blood results confirmed Trisomy 18 was still a blow. He will die, most likely soon, for his case is one of the severest forms. Lauren and Dan are doing all they can to make him feel loved and comfortable in the meantime.

Some surgeries have been discussed that might make it possible to prolong his life and allow them to bring him home for a bit of time, but at this point, his heart issues may not allow the first surgery to occur. Before a gastric tube can be inserted into his stomach to allow direct application of breast milk, surgery will need to remove the connection of the esophagus (food tube leading to the stomach) to the trachea (wind pipe leading to the lungs). I found a site that visually explained his digestive dilemma. His esophagus (food tube) leading from his mouth ends in a blind sac. His stomach also has part of his esophagus attached to it, but the top part of this portion is attached to his trachea. I know that situation sounds really strange and probably is tmi (too much information) for most of you , but I explained it in some detail for two reasons: it is relatively common in newborns and is repairable, and we are asking for specific prayer for wisdom in seeking this surgery for him. His heart will have to be ascertained stable and the amount of discomfort for his little body will be assessed, BUT if he can come off the respirator, breath on his own, be able to be feed through a gastric tube, he might, just might live long enough to come home with his mommy and daddy for the rest of his time with us. Of course, his kidneys have not been fully assessed, and if they fail, there is no treatment for him. His aorta (the largest blood vessel leading from the heart to the rest of his body and carries oxygenated blood to his cells) is malformed just enough to not allow a lot of growth of his little body to occur without being under too much stress. His neurological problems stemming largely from the lack of his corpus callosum will also hinder mental development, but he knows his parents, senses our love, and overall has a good Father in heaven who knows and loves him, too.

Lauren and Dan are aware of all of these issues and are very sad but not despairing. They are grateful for each hour of life they have with him; we all wish the situation were vastly different, but we/they/all of us are trusting our Lord for the strength to endure. They have many decisions to make and really appreciate the ongoing prayers for all of them. Lauren is tired but recovering; she has lost a lot of weight and is not very strong right now. I would ask you all to pray for both Dan and Lauren, as Lauren continues to recover, and Thursday Dan begins juggling work and family issues as he goes back to his job. Pray for strength of heart, soul, mind, and body in the Lord’s good graces to them.

For you all, who have so faithfully followed our story with your interest, prayer, and love, we thank you. Do not weep for us but weep with us. Please know we have seen God’s good gifts in this situation. We are hurting, none more than Lauren and Dan, and their pain will last a long time. We would love to hold our grandson some day, and we accept that we will never be allowed to watch him grow older, but none of us know our limit on this earth; our hope is in heaven. Please pray that we keep our eyes constantly on the Lord and not fall prey to fear.

My Jesus, my Savior, Lord there is none like you.
All of my days I want to praise the wonders of your mighty love.
My Comfort, my Shelter, Tower of refuge and strength,
Let every breath, all that I am, never cease to worship you.

From “Shout to the Lord”

Blessings,
Kathy for the Harts and Steinhauses