April 13, 2008, 11:00 AM

Do you ever have a moment when our Lord just stops you in your tracks and you realize scripture, His word, is chasing around in your head? Well, I had such a moment upon waking this morning. What a gladsome and humbling way to awaken!

As Christians, we know the change of our heart-of-stone to one of flesh indicates a total inward change, one that should be reflected outwardly, as we realize more and more the depths of the ugliness of our sin. If you have ever read C. S. Lewis’s children stories, The Chronicles of Narnia, you are probably familiar with the character Eustace introduced in the Voyage of the Dawn Treader. He is hideous in outward actions, hard-of-heart, such a good reflection of our sin! Eventually, he is changed to appear as ugly as his actions; he becomes a huge, hideous dragon. Yet, in that change, when he can really see his nature, his heart is reformed. The Christ-like character, Aslan, helps Eustace become human flesh by stripping off, with his sharp nails, layer upon layer of tough, warty, grossly green, thick reptile hide. The ripping away of ugly hide is intensely, excruciatingly painful, and Eustace cries out in agony only to have another thick layer ripped from his body; all the while his redeemer is both saving and cleansing him. Finally, in seeing his own flesh, Eustace is both unspeakably joyful at the newness of it and very, very humbled in spirit. Not a perfect picture of our life, it is after all just a story, but the way of sanctification for all of us is equally as redeeming and equally as painful and equally as joyful.

Little Jace and his brave parents have had a roller coaster of a week: battling the doctors, battling the possibility of death so before-our-face in life, and battling their and our own sin manifested in a 1000 different ways. Jeremiah 31:9, “I will cause them to walk by the rivers of waters in a straight way, wherein they shall not stumble.” A promise given to us that the battles are not in vain and the roller coaster ride is worth every moment, for the way of sanctification is a narrow path and steep. Okay, another book comes to mind, Pilgrim’s Progress! Add that one along with the Narnia tales to your summer reading list!

Jace slowly improves daily. Many set-backs occur for each step forward, but as Lauren ruminated on Friday, this constant giving him over to the Lord due to ill health may be their special journey with Jace until the Lord takes him home. No matter. He is worth every tear and battle, for he is made in God’s image.

If I may, I’ll quickly review this week:

Monday, 4/7/08: The surgery that could take his life or improve his quality of life. For Lauren especially, being the control-freak she is (her mother’s daughter, I’m sorry to say), it was one of the hardest day of her life. She had to say ‘good-bye’ to her little boy knowing that final view might be the last time she saw him alive. She and Danny were/are so brave and really clung to the Lord and each other. Amazing faith. He survived 6.5 tedious hours of surgery as the doctors constantly had to stop and wait for him to stabilize. But, he now has an intact esophagus, a feeding tube in his stomach, a trachea that can gain the proper pressure because it has no connection to the stomach, and an extra exit for urine alleviating unnecessary back-up of urine into his kidneys. God’s miracle at the capable hands of surgeons.

Tuesday, 4/8/08: Jace is in much pain and is heavily sedated with morphine. His little immobile body riddled with tubes is almost more than his parents can bear. Questions arise as to the pain they have opened their precious son up to. Is this worth it, they ask? His heart-rate is low, his breathing mechanically administered by a ventilator, his little body still, too still. Doctors, previously on the team to care for Jace prior to surgery, appear in disagreement with Lauren and Dan’s decision to push for more life for Jace. Some had advised to just bring him home on glucose, sugar water; no one lives long on sugar water. I’m so proud of my daughter and son-in-law for learning all they can of his illness, understanding and utilizing all the correct terminology when conversing with the doctors, and knowing how to use every machine to which Jace is supported. Keep in mind, our families may be pretty medical with numerous doctors and nurses, etc, but these two are NOT medically-oriented or even interested in science that much! They are more than Jace’s advocate, they have become advocates for the dignity of human life.

Wednesday, 4/9/08: Danny has to go back to work today, as he has used ALL of his vacation days staying with his wife and son in the hospital. All four of his grandparents finally get to see their dear grandson! We are elated, but he is so quiet and so thin and so mechanically supported. I cry over his pain and pray for Jesus’s special comfort for our little boy. [Madelyn, our youngest, had a life-threatening, horrible apnea episode at 1 month of age, which after 2 weeks of testing at Texas Children was written-off as a near SIDS, sudden infant death syndrome. As Madelyn grew up, she seemed to cling to one Psalm in particular (from early, early on), Psalm 23; I’m convinced that Jesus was walking with her (still is, too) in that Valley of the Shadow of Death.] Today, I’m praying that Psalm over Jace, too. Each line has special meaning for his short and difficult life. Jace’s ventilator tube was not repositioned correctly after surgery, so his left lung has collapsed completely. After several painful repositionings and x-rays, the ventilator appears to be in the proper position. Jace’s blood oxygen levels have begun to climb to more normal levels, and we are reassured that the ventilator will not only breath better for him but reinflate his lung. He also has an echocardiogram to reassess his heart structure and function. Unfortunately, the news is not good. Little Jace as 3 areas, two are large, where oxygenated and deoxygenated blood can mix causing undue pressure on his heart and lungs as his body struggles to grow and obtain the proper oxygen and nutrient levels. Because of his Trisomy 18 status, we are told he is not a candidate for open-heart surgery and will probably succumb to congestive heart failure. There are drugs given in minute doses, conventional to an older person’s diagnosis of congestive heart failure, that Jace can take when his symptoms worsen, but despite the doctor’s dismal predictions, we will explore other options soon; he needs to heal from these first surgeries prior to anything else being done. We are constantly reminded that God made this little guy just the way He wanted; he is a human being with dignity and worth, for Jace is made in God’s image. All human life is worth fighting for.

Thursday, 4/10/08: Day two of Danny only being able to be with Jace and Lauren at the hospital at night. They are weary of the battle with doctors and weary from lack of sleep. Jace doesn’t have a great morning as the ventilator has to be repositioned again, he is jaundiced again, and he is still so out-of-it, but he is showing encouraging signs of breathing around his ventilator and is moving his legs a little more in his sleep. His heart-rate remains much lower than his pre-surgery rate, but his lower blood pressure indicates that he may not be in as much pain. Yet, he is so very sleepy that we can’t wake him up. At 5:00 PM, Lauren requests to have his morphine drip turned off, and that morphine be given on an ‘as needed’ basis. Maybe now, he will have a chance to be more conscious. He receives one more dose later that night when his blood pressure rises once again indicating more pain.

Friday, 4/11/08: It is so very nice to see my daughter smile and laugh as she had been doing the week before Jace’s surgery! Jace is only on Tylenol for pain today. He is still sleepy, but we can wake him, and he is much more responsive when awake. Together, Lauren and I admire his silly faces and snotty nose, for he shows profound HATRED for his ventilator in the funniest ways, one of which is tightly clamping his mouth around the tube and blowing bubbles through his nostrils! The tube, having been repositioned AGAIN (not a fun process for him) is really too small for his trachea and has a 100% leak (essentially means it’s not really working for him), makes him gag, and doesn’t allow him the movement he wants to have for his head. He has gotten pretty angry at the thing today and even kicked at a nurse in frustration, who was simply trying to take his blood pressure in his foot. Apparently, rubbing his foot is fine and dandy, squeezing it until the toes turn purple is another thing entirely! We think he is waking up just fine. After his daddy arrives back at the hospital and a little family time for the three of them ensues, Jace just will not settle down to sleep. Around midnight, since his blood pressure and silent crying seem to indicate more pain than normal (and probably total frustration at his ventilator), a tiny dose of morphine is given. He finally, settles down around 2:30ish AM. Long night for Mommy and Daddy.

Saturday, 4/12/08: Lauren and Danny oversleep at the Ronald McDonald house. (Gee, I wonder why?) Slightly panicked, as any new parent may attest to when oversleeping, Lauren calls the NICU to find out how little Jace is doing while they quickly dress. Amazingly, and much to Danny and Lauren’s chagrin, the doctors unexpectedly have given the order to remove the ventilator without forewarning Lauren and Danny. It is all done before they arrive by his bed. But, since the day before he was using the vile thing as a gag enhancer, a chew toy, tongue extender, snot producer, etc., Jace is a happy little boy when they arrive, and for the first time in 3.5 weeks since his birth, Mommy and Daddy get to see his mouth without any tubes! Wow! He still has his narrow nasal-gastric tube in one nostril and of course, a cannula wrapped under his nose administering oxygen, but you can see his pretty mouth! He may have his daddy’s eyes and nose, but he has his mother’s gorgeous mouth. Barry, my husband, has a cold and since this is the first day in the last 4 days that Danny and Lauren can be alone with baby Jace, we choose not to visit them at the hospital. (Okay, this no-name-yet ‘grandma’ is sad for lack of time with her children, but I actually get some grading and gardening done, for I don’t know what to do with myself not spending hours at TCH! But, I miss seeing my ‘children’!) The last report I hear from Lauren late yesterday morning is that all is going pretty well, and little Jace’s breathing is much less labored compared to before surgery. We are so thankful. Monday, they may remove his huge, cumbersome chest tube allowing his mom and dad to hold him for the first time since surgery. Monday or Tuesday, an upper GI will be performed to determine if the esophagus is open and functional. Sometime next week, they will try out, with breast milk, the gastric tube in his stomach. He’s had some bleeding around the bladder opening, but the doctors feel it is not something with which to be too concerned.

Sunday, 4/13/08: We are looking forward to visiting today! Unfortunately, Barry will not be able to go with us due to his cold; he is sad about the missed time but figures it’s God’s way of saying, ‘get those taxes finished!’ We have been so thankful that we all have been well these many weeks so that we might visit.

As you all have probably figured out, you are my guinea pigs as I journal for Jace and his parents the roller coaster happenings of this journey through that narrow, sanctifying path we are all on. Thank you for your patience, prayers, and partnering with us.

For prayer:

• Wisdom with the next steps and many, many decisions: Home, when? Heart, what to do, to whom to speak? Home-health care and hospice, what type?
• GOOD reports that the esophagus is open and functional, that Jace can swallow, and that his heart holds up to increased growth and activity, that the minor bleeding around his bladder opening will stop, and that all the tubes, except perhaps the cannula and of course the gastric tube, will be removed.
• Remaining strong in the Lord before the many observers of our lives; remembering that we have no confidence in ourselves, but our hope and strength is in Christ. Galatians 2:20
• Good health (or healing) for all that visit with and offer help to Lauren and Dan and renewal of Lauren and Dan’s very weary bodies, hearts, and souls.
• Our son Sean’s safe return home from Spain in about four weeks and his next steps post graduation from TAMU.
• The MANY loose ends and unattended items plaguing our steps, one of which is my very helpful and understanding but often neglected younger daughter, Madelyn!
• May God be continually glorified in all we do and say.
• Continued wisdom for ‘grandma’ (I still have no official granny name!) and Granddad Hart to not smother, but be available in appropriate, helpful ways.

Please know that we pray for you all, too. I often am reminded that each of you have busy, full, joyful and sorrowful lives, also. Please don’t hesitate to share your lives with us. We don’t want to be so isolated in ourselves that we forget the ‘Body’ of prayer warriors that has supported us before the very throne of our Lord.

We love you all (and many we do not even know). I weep at the beauty of the body of Christ.

Thank you, dear ones, for your care and for forgiving for this long email!

Blessings,
Kathy, once again, for the Hart and Steinhaus families