Saturday, 6/7/08: Jace continues to thrive

I've mentioned Psalm 40 in a previous post; it's a psalm worth reading again! Here's the first portion:
"I waited patiently for the Lord; he turned to me and heard my cry.
He lifted me out of the slimy pit, out of the mud and mire;
He set my feet on a rock and gave me a firm place to stand.
He put a new song in my mouth, a hymn of praise to our God.
Many will see and fear and put their trust in the Lord."

I'm so challenged yet encouraged by this portion of Psalm 40: 1-3: Challenged, for I often do not wait patiently for anything; Encouraged, for He still hears my cry! Challenged, for I put myself in the slimy pit most of the time; Encouraged, for He (not me) pulls me out of the muck and places my feet on solid rock! Challenged, for I'm a poor witness to others singing off-key His new song to those around me; Encouraged, for I realize that He (not me) puts a melodious song in my mouth and moves people to worship Him.

This post is the first on the blog called 'Blessings through Brokenness' found at http://blessingsthroughbrokenness.blogspot.com/. I'll be posting on this site from now on and including pictures as I can. Toward the bottom of this blog, a link to Lauren's blog can be found as well as other sites of interest.

Our little man, Jace, continues to astound us. We are so grateful to be seeing little smiles from him. Yet, he has numerous daily challenges. Despite Lauren and Danny's best efforts and valiant attempts to feed little Jacer (his daddy's nickname for him) around the clock, he has not gained weight. Some days (Friday early morning, 6/6/08 was such a day), Jace seems to spit up almost all of his 30-35 mL feeding. As you can imagine, seeing that milk come out of his mouth and nose is totally disheartening to Lauren and Danny. Thursday, 6/12/08, Lauren and Jace will see a nutritionist. Please pray for some encouraging and helpful information to put some weight on this little guy.

On Wednesday, I stopped by the cardiologist's office to pick up DVDs and reports for all three of Jace's echocardiograms that he's had since birth. I overnighted them to Monroe, LA, to my dear mother-in-law's first cousin, Dr. Terry King, who happens to be a famous pediatric cardiologist! He has very kindly requested to take a look at Jace's echos to see if there is any procedure that might help his little heart function better. Here's an interesting tidbit of information that Jace's cardiologist gave me when I saw her Wednesday concerning the location and size of the remaining hole between his ventricles (lower chambers of the heart): the hole is not HUGE, but termed moderate in size and located in a softer, more membranous upper area of the ventricles; holes in this area have been known to close on their own. It's rare, but possible in this softer area of the heart. We pray daily for more miracles with this sweet baby!

He has become fascinated with the camera lately as evidenced by the posted picture! He will stare and smile at the camera now! He has many very alert times during the day (and night), and tries to mimic mouth movements that he sees others doing. Oh, he has his fussy moments, and Madelyn has taken to calling him 'fussy pants' while grinning at the hilarious faces he'll make when he's working himself into a crying jag! He doesn't have the strength to roll over, but he moves his arms and legs constantly. Last Tuesday, I bought bibs for him that say 'I love Mommy' and 'I love Daddy', for Jace adores being in their arms! Lauren and Danny are tired, very tired as this feeding schedule seems never-ending. But, as I've said before, they feel so very blessed to have him home with them, that the sleep deprivation is worth it.

Please pray for their stamina to continue, and that they would stay free from illness. Pray for little Jace's heart and nutritional intake. He needs to gain weight if there is any possibility of heart repair. He still wears preemie clothes and diapers; you can imagine how tiny he is!

We appreciate you all!

Blessings,
Kathy for the Harts and Steinhauses

Saturday, May 24, 2008, 10:30 AM

Philippians 4:4-8 A scripture worth pondering

“Rejoice in the Lord always. Again I will say, rejoice! Let your gentleness be known to all men. The Lord is at hand. Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy - meditate on these things.”

Notable Quotes (just a sampling of many)

“This little guy is such a fighter with such a sweet personality; we’ll do what is best for him.” (Pediatric Cardiologist)

“As God continues to open doors, we will walk through them, no matter what those doors are.” (Lauren and Dan)

“Oh, poor little guy; look, I got a smile anyway!” (Cardiology nurse after lots of ‘man-handling’ of Jace during recent tests)

“He’s small, but he’s strong.” (Pediatric surgeon upon examining Jace for a G-button insertion procedure)

“We are all in love.” (GiGi – grandma Kathy Hart about our little man)

“The Lord definitely touched me, so I'd like to believe that something good is happening with [Jace].” (A sweet friend who has experienced her own healing from the Lord while standing in prayer for Jace!)

“Not one of us will be the same because of Jace’s presence in our lives.” (A version of the statement heard over and over again from many people!)

Much has happened in the three weeks since my last email. Many of you have emailed me wondering what is up. I’m sorry for the delay.

Jace turned 2 months on Tuesday, May 20^th! With such a grim prognosis prior to after his birth, his continual desire to cling to this life is amazing to all of us. He performs some of the usual antics of a 2 month old despite his limitations. He wholeheartedly responds to music, tracks familiar faces and objects, listens for and quiets at his mom and dad’s voices, makes cooing noises and even moves his own mouth as if mimicking the mouths of those who are talking to him. Due to his very small size and limited use of his clenched hands, he does not have much bodily control, but when placed on his stomach, he momentarily holds up his head to look around and uses his legs and feet to push against our legs when held on our chests. He shows remarkable strength for one so enfeebled with congestive heart failure, frail bones, and small size.

He seems to thrive on the gentle handling of all who love him dearly. We are honored and blessed by God that He has seen fit to answer all of our prayers to allow Jace to leave the hospital and be at home these 4 weeks, for Lauren and Dan have just passed that 4 week mark yesterday! What a nine weeks we’ve all had! God is gracious.

Jace continues on hospice care, but we’ve seen many doctors at TCH-Sugar Land during the 4 weeks he has been home. Still on oxygen and fed only through his gastric tube on a very demanding schedule, Lauren and Dan are doing all they can to maintain normalcy and adhere to a good schedule for Jace and their family time. They’ve even begun reading out-loud to one another as well as getting out to church, the store, and other gatherings (of course on a very limited basis due to disease-exposure concerns). They are weary, sometimes weary beyond my own understanding of the kind of time and energy they spend simply caring for Jace and for Danny his work schedule. Lauren continues to relish, even in weariness, being the wife and mother she knows God will give her strength to be for Dan and Jace. We thank you all who have so plentifully and lovingly provided meals for them, too. It gives Lauren the option to cook when she can and yet know when she simply can’t get to a meal that food will be there for Danny when he comes home from his long days at work.

If I may, in the midst of giving you a quick rundown of praises and needed supplication, let me tell you of Jace’s doctor journey these last 3 weeks, and he has seen MANY doctors, some several times!

Jace’s pediatrician, although familiar with Trisomy 18, has not been the primary physician to any of these little ones, humbly admitting his trepidation in caring for all of Jace’s issues. Therefore, he has been superb in handling Jace’s needs by providing coordination of the TCH doctors Jace must see to address his problems, even going so far as to face-to-face speak with a wonderful pediatric cardiologist who agreed to care for Jace’s severe heart issues.

Here’s our biggest praise: you may remember that among Jaces’ many heart ailments, the fetal artery, called the ductus arteriosus, that, during normal fetal development connects the aorta (largest main artery leading from the heart to the body) and the pulmonary artery (artery that branches leading from the heart to the lungs), rather than closing properly at birth remained open. One cause for Jace’s ductas remaining open (which once a baby starts using his lungs causes increased abnormal pressure in the lungs) was due to his doctors administering prostoglandins to keep it open upon his birth. The concern at that time was if it closed too quickly, Jace’s aorta would abnormally constrict cutting off all blood flow to his body. However, over time, if the DA remains open, the pressure to the lungs increases to the point that fluid builds up in the lungs causing poor lung function, the heart enlarges, etc. When Jace left the hospital, his DA was ‘wide open’, which the doctors refer to as a ‘patent ductus arteriousus’ or PDA. We were told that after 5 weeks if it hadn’t closed on its own, it wouldn’t. Thus, at five weeks old when he left the hospital, this PDA problem combined with his huge hole (called a ‘ventricular septal defect’ or VSD) in the septum (separating tissue) between the two lower chambers of his heart (the ventricles) was already putting huge pressure on his lungs and heart causing constant fluid build-up in his lungs as the heart continued to overwork and enlarge.

Well, to the happy disbelief of the wonderful pediatric cardiologist we saw yesterday, the PDA appears to be entirely closed now! He does appear to have a small aortic constriction, but his blood pressures and (on oxygen) his blood oxygen saturation levels appear good in both his hands and feet indicating that the small constriction is not bothering Jace at this point. We are so thankful for this miracle. True, his VSD (the huge hole in his heart) is still very large, and his heart is enlarged with some fluid in his lungs indicating that Jace is still in congestive heart failure, but with the elimination of the PDA problem, Jace will see a little more time of relatively good health despite the increased stress on his lungs and heart. The cardiologist, in her amazement, checked and rechecked the echocardiogram and his blood pressures and will do so again with other doctors this weekend, but we left the office with her reasonable diagnosis that the PDA has miraculously closed. Thank you for praying for this little reprieve. The doctor still compassionately and soberly, with hugs, made it clear that this time is just a reprieve, long-term (next several months) Jace’s outcome is still grim.

He continues to just maintain his tiny 4 pound 1 ounce size despite his parents’ aggressive feeding schedule. Babies who did not have connected feeding tubes (esophaguses) in utero do not develop large stomachs. He can not hold more than 30 to 35 milliliters (about 6 to 7 teaspoons) of formula at any one feeding through his G-button. Lauren feeds him a little higher calorie count formula mixture every 2 hours from 9:00 am – 9:00 pm and then every 3 hours from 9:00 pm – 9:00 am. Each feed takes 45 minutes to prevent his spitting up all he’s taken in. They will see a nutritionist in about 3 weeks. Gaining weight is a bit of a catch 22 as a larger size would increase pressure on his heart and lungs, but the little guy is so very skinny, with absolutely no fatty tissue, for he is over 18 inches long!

He is still jaundiced, and Lauren has him in the sun almost daily. We are beginning to see some diminishing of his yellow skin as the UV rays break down the build-up of bilirubin in his bloodstream. The doctors still question whether his liver and kidneys are functioning normally. The pediatric urologist checked his vesicostomy (artificial surgical opening in his bladder for urine output) last Tuesday and wants to do an ultrasound on his kidneys in 3 weeks to check their functioning. He also checked Jace’s two severe groin hernias. We’ve noticed that when Jace cries the hernias are really distended and even some of his bowels protrude through the muscle tears. We can palpate or push them smooth, but the hernias could cause bowel obstruction (not at all a good thing!) and will need to be repaired some time. But his small size and heart issues make routine hernia repair not so routine. We’ve been told what symptoms to look for in case of bowel obstruction. Evidently, we would have only 6 hours of leeway to get him to the hospital and prepped for surgery if obstruction occurred.

Lastly, yesterday, the pediatric surgeon removed his long G-tube and inserted a G-button into his stomach opening. It works a little differently from the tube, but we hope in the long run it will be easier and safer to use. The only issue is that the ‘small’ button looks huge and heavy on his little stomach and will take a little getting used to!

So that’s the doctor journey with Jace. Our own journey, I think, is epitomized in the passage that began this letter. Something sobering yet equalizing occurs when looking at the reality of death and the challenges of meeting this ‘gift that happens to all men’ head on. Will that meeting be a collision strewn with lots of anxiety and bloody tragedy or will it be one of rejoicing met with prayer and supplication and peace? The former is our man-made response; the latter is only found in our Lord’s grace which passes our own understanding. I’ve noticed that I can ask for that grace and peace, but I can’t ‘turn on’ the ‘feeling’ by my own whim. I don’t know how, but God truly gives as we need. We’ve talked often of handling both the life and death of Jace, but the reality is that we should be looking at our own lives and deaths with equal clarity. I would say that clarity of sight and insight is one of the greatest gifts God is bestowing on those of us who have been touched in some way by Jace’s story. Life is both sweeter and yet somehow not so binding as before. I know I speak this truth for many of you who read these epistles.

Together, our dear friends, let us have a purpose bent on God’s good plans, not our own; a purpose that looks for the truth, the nobility, the justice, the purity, the lovely, the good, the virtuous, the praiseworthy to not only ‘meditate upon’ but to ‘act upon’. Jesus said God’s commandments could be summed up in two great commands: to love God with all of our heart, soul, and mind, and to love others as we love ourselves. (Matthew 22:36-40) One of Jace’s many legacies for me is perspective – to have a God-perspective which often means sacrificing our own wants. Death is the great equalizer of man, but with two very different outcomes: separation from God’s grace or glory with God’s grace. We will all face death in those around us and for ourselves; it’s how we view what is beyond that death that is of ultimate importance. As I’ve talked with our son, Sean, who is home for a little while after his graduation from TAMU, each of us is called by God to a different mission here, but the point is to listen to Him and act for His purpose alone. Listen, Purpose, Perspective

Thank you, dear Lord, for sending this little boy, whom the world terms imperfect, but we see as perfect in You; one little man to show us Your miracles, grace, perspective, purpose, and strength. We pray to never forget the many lessons we’ve been taught by You and the softening of hearts that so many of us have experienced. For You and You alone, O Lord, our Rock and our Redeemer. Amen.

Blessings,
Kathy for the Harts and Steinhauses

P.S. I realize that I need to put these updates on a blog so that I can download some pictures and other links. Now that classes have ended, and I’m almost through with getting my grades out, I’ll be working on that site. I’ll pass along the information as I develop it. Thank you again and again for the prayer covering you all have bestowed upon our family. Finally, our son, Sean, is making some pretty hefty long-term decisions right now. We’d be so gratefully for prayer for wisdom for him. Thank you, dear ones.

May 1, 2008, Thursday, 9:20 PM

Psalm 73:28 “But as for me, it is good to be near God. I have made the Sovereign LORD my refuge; I will tell of all his deeds.”

Today, little Jace is six weeks old. Tomorrow, he will have been home one week. Yesterday, the hospice doctor saw him for the first time. We are so grateful to have him home from the hospital, but I have to admit the hospice doctor, as sweet as she is, was also discouraging. After all, hospice is designed for the terminally ill. But, right now, our little guy is holding his own. Monday, Lauren took him to the TCH pediatrician she will be using while Jace is at home. The doctor was relatively pleased with Jace’s health. His heart murmur is very pronounced and fluid is constantly an issue in his lungs, but the medication he is on is relieving some of the congestion. He is still jaundiced, due to his liver not processing the liquid supplement from the hospital well, but Monday’s blood test showed that his liver functions are improving. He now has passed his birth weight by 2 ozs, weighing in at 4 lbs, 3 ozs on Monday. However, preemie clothes still hang on his lanky frame for he has grown 2 inches since birth! I can’t imagine skinnier legs, except on my dear husband, but that’s a little tmi! I’m sorry!

Lauren is exhausted as Jace’s around-the-clock feedings take over an hour to prepare and administer every three hours. But, as she said on Wednesday, Jace is worth every moment. The hospice nurse will see Jace periodically as needed to ascertain his status and note any changes in his health. The doctor told us Wednesday that he is one of four Trisomy 13 or 18 babies on their service. Considering I knew virtually nothing about the syndrome before Jace, I’m amazed it is this common. I’m praying for those families, too. Not knowing if they know the Lord or not, their sorrows and joys are just as profound as ours.

So many of you have logged into the Care Calendar to offer meals. We are so humbled and grateful for the continued love showered on us. Thank you.

Please continue to pray for wisdom as we enjoy each day that God gives us with our little gift-from-God. Pray for stamina for our dear daughter and son-in-law. They are truly remarkable; I’m in awe at their devotion, love, and perseverance with little Jace. We still pray for healing for Jace, for our God is a God of miracles, yet we would be remiss not to recognize all of the other miracles He has already provided through Jace. For instance, several friends have shared that Jace’s life and struggles have proven to be an impetus for them to talk with non-Christian friends about suffering and evil and God’s goodness in the midst of a suffering world.

I do not understand how God works or why evil and suffering occur, but I know that He is good despite my ignorance. I finished up Augustine’s City of God with my year 1 class today. Every time I study this book with a class, I appreciate Augustine’s perspective about God’s grace in the midst of suffering. He wrote this work at a time when the Roman Empire was falling apart both internally and externally. Many of us might consider our own lives coming apart in a similar fashion, thus it is good to be reminded that this world is not our home and being comfortable is not our goal; happiness consists in being at peace with God and looking forward to the eternal peace with which God gifts us.

I’ve enclosed some pictures from our visit with Jace and mommy and daddy last Sunday. As you can see we are so blessed to have all five of our offspring (and offspring-in-law) here in Houston at least for the time being! Sean returned from Spain last Thursday and is sooo glad to be graduating from TAMU this month! And Madelyn and I are looking forward to the change-of-pace from classes afforded with summer’s arrival.

To you all who have been so very, very faithful as prayer partners and fellow sojourners in our travels, thank you. We love you.

Resting in the Redeemer,
Kathy for all of Jace’s family

Sunday, 4/27/08, 7:59 PM

Thank you to all who want to provide for the Steinhauses! You have shown so strongly the beauty and bounty of the Body of Christ through your ministry of prayer and care for our daughter, son-in-law, and grandson. We continually are humbled by this shower of love. Please know that the evidence of God working through you has spoken powerfully to many who do not know Christ and are watching as this testimony of praise unfolds in our lives. Thank you for your bold witness in the name of Christ!

Hebrews 13: 15-16 “Through Jesus, therefore, let us continually offer to God a sacrifice of praise, the fruit of the lips that confess His name. And do not forget to do good and to share with others, for with such sacrifices God is pleased.”

In regards to meals for Lauren and Dan: Since only two are eating in their family, and they have limited space and don’t want to waste food, I think only 3 meals per meal of some sort (breakfast, lunch, dinner) will be sufficient.

I know many of you prefer to drop your food items at my home in Quail Valley: 2914 Nancy Belle Ln., Missouri City, TX 77459. Please do not hesitate in contacting me by cell: 832-455-2076, to set up a delivery time.

However, if you prefer to drop items at Dan’s and Laurens’ apartment, we are trying to minimize interruptions and exposures to germs as Lauren and Dan settle into a critical care routine with Jace at home, thus if you deliver items to them, please be aware that visits should be short, and as much as Lauren loves the little ones of others, your precious children should not be brought into the apartment. Thank you so much for understanding the limitations the Steinhauses need to employ.

I have set up a website with a calendar to allow those that want to choose a day to bring food. The link below should bring you to the calendar page, and by using the ID and code listed below, you should be able to access the personal calendar for Lauren and Dan. Choose your preferred date, click on a RED ‘meal’ and fill in your information. You (and I) will receive a confirmation of your generous offer. If the ‘meal’ is green, the meal has already been claimed or fulfilled. I will try to keep the site updated and even include some pictures and updates when I get a chance. I will also send updates out by email in the manner I’ve been using.

http://CareCalendar.org ID: 4206, Security Code: 1213

Many of you have mentioned that you would prefer providing a gift card or money for meals. Thank you! Please feel free to either give them to me or send them directly to Lauren and Dan at 15015 W. Airport Blvd, #323, Sugar Land, TX 77478.

If you have any questions, do not hesitate to email me. I will get to them as quickly as possible.

Thank you and may blessings from our Lord overflow to you.

Humbly,
Kathy Hart

PS. As to Jace’s adjustment: Lauren and Dan have their hands very full trying to learn the machines and provide around the clock sustenance to him. You certainly can continue to pray for their wisdom and settling in to the critical care routine. Lauren will be doing most of the care as Dan will be working rather long hours beginning Monday. Jace and Lauren will visit his TCH pediatrician here in Sugar Land tomorrow. The hope is to get some insight into streamlining his feeds and making them more effective. His jaundice seems to be slowly improving, and after a very unsettled Friday with Jace running some fever, he seems to have adjusted pretty well to his new environment. We took some cute pictures today that I will try to post to the CareCalendar website soon. Thank you for your continued prayers for us.

Saturday, 4/26/08, 1:01 PM: Jace is home with his mommy and daddy!

Jace is home with his parents! They arrived around 2:30 yesterday afternoon and spent a good part of it with the hospice nurse learning the ‘ropes’ of caring for their son. I spoke with them briefly around 6:30 and understood that all was going pretty well, but they had much to adjust to. Jace, too, seemed pretty agitated with the unfamiliar surroundings. I’ve not spoken with them today but recently left a message on Lauren’s cell. I’m sure they have their phones off or on silent so that they can snatch sleep when they can, however, we assume ‘no news is good news’!

I’ll keep you posted as I know more. Many of you have emailed offering food and other items. I’ll get back with each of you soon! I’m home most of the day today to catch up with home and school items and will address the computer soon! Thanks so much for your patience.

Many, many thanks!

In the Palm of His Capable Hands,
Kathy

P.S. As I was praying for Jace’s very congested lungs and poorly functioning heart, I was humbly reminded that every single beat of my heart and inflation of my lungs completely is dependent upon God, too. I’m both humbled and grateful to be alive entirely by His grace. I’m considered healthy; how much more should I rest in God’s sustenance for little Jace and His wisdom in knowing what is best for our little guy!

Friday, 4/25/08, 9:03 AM

Dear Ones,

Psalm 68: 19 Praise be to the Lord, to God our Savior, who daily bears our burdens.

Jace, now 36 days old, may be coming home from the hospital today. Although preparations were made rather quickly with hospice and equipment was delivered to the apartment yesterday, we will hear final word this morning. Jace has been stable for about 5 days now, and I had the pleasure of holding him for the first time on Wednesday afternoon!

He will need much care at home as he will be on oxygen and must be fed through his gastric tube; at the moment, milk must be administered every three hours around the clock and takes an hour to deliver the breast milk/formula/medicine mix. He is on still on medication for reflux and congestive heart failure as well as supplements and antibiotics. He spit up more yesterday, and due to the high possibility of aspiration has to be watched constantly. His still a little thing, barely back to his 4 lbs. 1 oz. birth weight. Lauren and Dan, when he is home from work, will be very, very busy, but, with an understandable amount of trepidation, they are excited at the possibility of being on home hospice care rather than intensive care at TCH.

Please continue to pray for Jace’s recovery from surgery and wisdom as Lauren and Dan continue to confront the challenges of raising their terminally ill little one. As you can imagine, each hour of each day is precious.

I do think meals for them would be appropriate, but Lauren thinks only 3 a week for a couple of weeks is necessary. (Um, I’m not so sure! I think they will be confronting a rather formidable task!) However, since they must be very careful about exposure to infection, I’m not sure how we are going to arrange delivery! For the immediate future, if you are interested in providing a meal, would you email me directly? I’ll try to organize a schedule for them. They don’t need much. Danny heartily eats anything and likes an occasional sweet thing, but Lauren is not a huge eater and shys away from meat preferring salads, soups, and veggies. I’m going to try to have a hearty soup and salad for them this evening, and I know they have at least two soups frozen in their freezer from generous friends who brought food the week Jace was born. I know after hospital food, Danny would love real meat and potatoes! I’ll be doing some last minute food shopping (I threw all perishables away weeks ago!), and now they need some baby things from Babies R Us. Lauren doesn’t even have a diaper bag or bath tub yet and preemie diapers are hard to find.

We pray God allows Jace to grace our lives for a bit longer, but Lauren and Dan are thankful for the hospice care they will receive. Bringing Jace home is a daunting task, but, with our Lord’s strength, Lauren and Dan are up to the challenge. They have been an incredible advocate for their little Trisomy 18 son already and have considered it a privilege to learn the machines that will improve their son’s care.

We appreciate you all so much. The battle continues for this weary young family, but they wanted me to thank you all so very much for the many, many prayers, the generous hearts, and the love they’ve felt even isolated in the hospital. They wish they could see you all to thank you personally and show off their son, but right now they need some peace and quiet to get adjusted. We have promised to ‘leave them alone’ (as much as possible!), so they can settle into some routine.

I’ll try to update you as I have more information, but for now, please know that you guys have been a integral part of Jace’s stabilization and the strength Lauren and Dan feel. Thank you.

Resting in the grace of God,
Kathy for the Harts and Steinhauses

Sunday, April, 20, 2008, 9:01 PM: Jace is one month old!

O Love that will not let me go, I rest my weary soul in thee;
I give thee back the life I owe, that in thine oceans depth its flow
May richer fuller be.

O Light that follow’st all my way, I yield my flick’ring torch to thee;
My heart restores its borrowed ray, that in thy sunshine’s blaze its day
May brighter, fairer be.

O Joy that seekest me through pain, I cannot close my heart to thee;
I trace the rainbow through the rain, and feel the promise is not vain,
That morn shall tearless be.

O Cross that liftest up my head, I dare not ask to fly from thee;
I lay in dust life’s glory dead, and from the ground there blossoms red
Life that shall endless be.

Thank you for your continued prayers and interest in our family growth-walk in sanctification. I really liked this hymn we sang at the close of the Lord’s Supper this morning, for it carries both the poignancy of the buffeting of life that we all receive, and yet it contains the promise of hope renewed. Poignancy and Promise certainly describes our Journey with Jace! This road has been filled with both pain and renewal; in short, a roller coaster!

We take each day as God grants it with Jace.

On Friday, he seemed to take a turn for the better as his lungs begin to partially re-inflate, and he was able to take more breast milk in his gastric tube. He still is just under 4 pounds and very, very fragile, but yesterday, the doctors decided to remove him from the warming bed he has occupied since birth. He now resides in a normal (or as Dan says “severely steel institutionalized”) bed and can be dressed in tiny smocks or onesies as well as being swaddled for sleeping. It’s really pretty cute! I think he’s become a little ‘doll’ for his parents now that they can actually dress him! Madelyn and I did the grandparent/aunt thing last night and ran out and bought a few ‘necessities’ for the little man. Lauren just laughed at me today went I brought up an armload of ‘absolutely must-haves’ and said she KNEW I would get too much! Oh well, aren’t we supposed to over-purchase on the first grandchild? I’m just doing my duty.

Jace is still jaundiced, but his liver lab numbers are improving, and we hope the continued breast milk/formula/vitamin K supplement he is receiving will continue to agree with him. His VSD, the hole between his two ventricles in his heart, is growing louder, indicating the improper blood flow may be increasing. They have added a drug for congestive heart failure to his supplement to try to remove some of the fluid back-up from the heart into his lungs. Tomorrow, they may remove him from the pressure-inducing CPAP breathing device and see if he can keep his oxygen levels up on a cannula without the added pressure. The next major tube removal will be the PICC line that has been his primary source of nutrition until the gastric tube could be used.

For Prayer:

1) Jace tolerates his feedings as they increase in amount and duration.
2) He is able to breath sufficiently on the cannula alone.
3) He remains infection-free now that this first hurdle has been surpassed.
4) The doctors would set a tentative date for his homecoming.
5) No more emergencies arise delaying his discharge.
6) His VSD would some how be healed or reduced by God’s good hand of healing.
7) His parents have wisdom as they provide for this special and special-needs little boy for as long as he is with us.
8) For rest for all of us and to remain illness-free! Both Barry and I have been struggling with something respiratory which is greatly sapping our strength, but then we are a bit on the oldish side!
9) Sean, our son, finishes his classes in Spain on Wednesday, 4/23. He surprised us yesterday by telling us he will be coming home on Thursday, weeks earlier than planned! He felt with Jace’s tenuous condition, if something happened while he was ‘selfishly’ traveling Europe and he COULD have come home earlier and chose not to do so, well, that would just be ‘shameful’. Those musings are not mine, but Sean’s evaluation of his situation! We gladly welcome him home even early!

May the Lord bless each of you on that road of sanctification He has planned for you. Remember his promise to sustain no matter the trial on that trail.

Blessings,
Kathy for all the family

Wednesday, 4/16/08, 7:49 PM

Dear Ones,

Psalm 40: 16-17

But may all who seek you rejoice and be glad in you;
May those who love your salvation always say, “The LORD be exalted!”
Yet I am poor and needy; may the Lord think of me.
You are my help and my deliverer; O my God, do not delay.

A dear friend sent this portion of Psalm 40. More than apropos and certainly timely for all of us, Dan and Lauren, especially, clung to its promises. Again, thank you all for your thoughts and prayers. I try to bring many of the emails to Lauren and Dan when I visit daily.

Jace will be four weeks old tomorrow, quite a feat for this precious baby.

Madelyn and I waited two hours in the waiting room as today’s visit in Jace’s room was cut dramatically short. When I arrived in Jace’s room, I could tell Lauren was pretty upset. Little Jace was breathing very heavily and still had his chest tube, too, so I knew something was not right. While I was there, his oxygen levels began to plummet dramatically, and the doctor quickly made the decision to put him on a CPAP (continuous positive airway pressure) device. Although this device is considered a type of ventilation, it does not involve intubation in which a tube would be put down into his trachea. Poor little guy. His right lung has totally collapsed, for he has an infection somewhere and is now on heavy-duty antibiotics. To make matters more complicated, the very bottom part of his left lung is folding inward slightly, his liver is not functioning properly so he has turned a dull orange color, and due to a low platelet count (the component of blood that causes clotting), he had to receive platelets this morning, too. The low platelet count caused a delay in pulling his very painful chest tube, for he could start bleeding internally if he isn’t clotting well. The really horrid result for Lauren of not pulling out his chest tube means more time will pass before she is allowed to hold Jace again; the last time he was in her arms was 4/7/08, the early morning of his surgery day. The weariness for us all is intense. Every day it is a new adventure for our little boy with us along for the ride. Yet, the ‘LORD be exalted’ in all things still rings true. For instance, the care and concern from the two doctors and the nurse working with Jace today was wonderful to behold. They were gentle, clearly expressed what they thought should be done to improve his care, quickly sought to alleviate his suffering, and listened patiently to Lauren and then to me, too, as we asked questions. I was so grateful. Shortly after the CPAP was attached to his little nose, I was asked to step out. Madelyn and I stayed for a time in the waiting room, but eventually chose to leave, thinking we would be of more use helping in some other way. Just 15 minutes after I left the hospital, Lauren called to say we could come back in! RATS! By that time, I was caught in lovely Houston rush-hour traffic and really couldn’t turn around! But, she did tell me that his oxygen levels had come up, but his breathing was still very labored. One or the other of his lungs has collapsed several times since surgery; they always manage to re-inflate, but . . . . We are praying that his blood count looked better when it came back late this afternoon, so that they pull out that chest tube tonight, and by the time we return tomorrow, Jace will be comfortably content in Lauren’s arms.

Our little one struggles to cling to this life. His parents are diligently exploring ways to make him more comfortable without resorting to extraordinary measures which may or may not help him in any way; bottom-line, his frail body’s organ systems just do not function properly. We continue to covet your prayers for his parents as they love and care for him. Lauren has not left the hospital since the 4^th day he was born. They slept in their own bed only two nights after Lauren was discharged from the hospital after Jace’s birth before moving pretty permanently to the hospital to be with Jace as much as possible. Obviously, they are stressed, who wouldn’t be, but the ONLY reading material they have up there, on purpose, is God’s word, their true source of strength. Lauren has had trouble eating and sleeping, but really, I do understand. She knows her time with Jace is short. Unlike most of the NICU babies, who have a long term prognosis of going home sometime in the future to resume relatively normal lives, Danny and Lauren know their time with their son is now, not later.

Thank you for your interest, for asking us for updates, for your love, and for your prayers.

Blessings and much love,
Kathy for the Harts and Steinhauses

Monday, 4/14/08, 9:28 PM

Thank you for your prayers. We covet them more than you can possibly know. Truly, remembering that so much love is backing us up does spur us on. We have several immediate prayer requests:

1) Jace’s esophagram did not show good news. Although the area around the sutures on his esophagus is not leaking, a small connection (fistula) between the wind pipe (trachea) and food tube (esophagus) was missed in surgery. They thought he only had one fistula, apparently he had two. With this connection in his neck, he will not be able to take anything by mouth and still runs the risk of aspirating food put into his stomach directly back into his trachea and down into his lungs. Please pray for wisdom for Lauren and Dan for the next step; we don’t even have a clue right now what it might be.

2) Also, the breast milk he was given today through the gastric tube in his stomach came all the way back up his nasal-gastric tube, which still runs the length of his esophagus from nose to tummy. We’re not sure what that problem means.

3) At times, little Jace cries almost inconsolably. We are not sure if it’s from pain (he still has many tubes) or from hunger for now that less air enters his stomach, he may actually feel hungry.

4) Dan and Lauren are very, very weary. Dan left work early today due to the unexpected news, something he can not continue to do after taking so much forced vacation time. They need wisdom and rest.

5) We, as the grandparents, are struggling to know how to help them best. I’m trying to be at the hospital as much as I can and still work, yet even if I had more time, hovering over them only makes them more nervous for they feel they are putting someone ‘out’. Pray we know just what to do for them when they need it.

“Our God Reigns’ has become a soothing litany for me. In the midst of heartache and brokenness, He has lost no power and is in total control. Just reminding myself of His sovereignty is calming. Please pray we conform to His will and recognize His grace in all things.

Blessings,
Kathy

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

April 8, 2008, 6:26 AM

Romans 5:1-5
Therefore having been justified by faith, we have peace with God through our Lord Jesus Christ,
through whom also we have obtained our introduction by faith into this grace in which we stand; and we exult in hope of the glory of God. And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.

A dear friend sent this reminder last night. It was timely for I had just gotten off the phone with a very quiet Lauren. Jace was in such pain and was undergoing another blood transfusion, and being just 18 precious days old did not understand why he hurts or why his mommy could not pick him up so he can sleep on her chest hearing her heartbeat. He was been given morphine to calm him, but the little fighter couldn’t/wouldn’t go to sleep, and the heartbreak in my sweet daughter’s voice mimicked my own heartbreak for Lauren, Danny, and Jace and the suffering this world brings.

Lauren and Danny have hope and no regrets and peace that only comes from God, as well as an inkling of the bigger picture God is doing in this difficult situation, but as many of you know, seeing your child suffer so is agonizing. I’ve been praying for God’s Mighty Hand of comfort, peace, and hope to just enfold around them.

Right after they returned to the room yesterday, nurses came by with notes and hugs, many quietly speaking God’s peace. I can get caught up in the ‘bigger picture,’ for I’m not right there seeing Jace’s little tube-riddled body all the time, but that picture of Jace fills their eyes every moment right now. Please pray with me that the Evil One is kept at bay as those niggling thoughts of ‘what ifs’ and ‘why’ come to the surface. I think that in the face of a little child, either healthy or ill, we get a glimpse in our harried, rushed world of the ‘Seen’ just a bit of the enormity of the ‘Unseen’ portion of this universe. Our God Reigns supreme. We need this constant reminder; we all do.

Thank you, dear ones, for your prayers.
Kathy

April 7, 2008, 6:50 PM: Jace's surgery outcome

Little Jace made it through surgery and is recovering in his little NICU room! I know this message is what many of you have been praying for and waiting to hear. Thank you for rejoicing with us.

“You are marvelous, God. You have shown us Your love through your Son Jesus Christ. You give us the gift of life, Father. You have revealed to us that through Christ we may have even greater Life. We thank you for that. Without You, we would be nothing at all.” This statement is a piece of a prayer for Jace by one of my dear students. I have heard numerous times this weekend from students, friends, and family members that we will never know the impact of little Jace’s life on their lives and others. He is a much loved little one. We are humbled by the many kindnesses to us, and by God’s continued mercy to allow us this time with Jace. Thank you, dear ones.

We left the hospital around 4:00 PM shortly after Jace was returned to his room, and his parents joined him at his bedside. We’ve not heard of further tidings since that time. But, to briefly document our day: We all arrived early. Jace was taken to surgery from his room already sedated and intubated (placed on a ventilator) around 8:30 this morning. His parents were peaceful but knew that the pictures they had taken of their little alert boy this morning might be the last of him alive. We all had to cry, but none of us doubted that this surgery was not in Our Lord’s will. We (both sets of grandparents, Madelyn, dear Judy Mixon, and for a brief precious time, our pastor from Christ Church PCA, Fred Greco) prayed, we waited and waited, we chatted; Lauren and Dan, understandably restless, but confident in the Lord’s good pleasure whatever it might be, checked out of the Ronald McDonald house, walked, prayed . . . . Around 1:30, the main surgeon of the first team of doctors found Lauren and Dan and excitedly reported that Jace responded well to the surgery. He was so sweet to hunt them down (for they were not in the waiting room) knowing very well the tenuousness of Jace’s condition!

Evidently, so related the surgeon, as surgery began, Jace’s vital statistics dropped indicating that his heart might not be able to take much surgery, but as soon as they severed the trachea-esophagus connection, remarkably, all of his stats returned to normal, thus the surgeons were able to connect his tiny esophagus and inserted TWO temporary feeding tubes, a gastric tube directly into his stomach and a nasal-gastric tube leading from the stomach, up the esophagus, and exiting the nose. Once he has healed, if his swallowing reflex works and he can take fluids normally, both tubes can be removed, but both must be surgically implanted. Yeah! The surgeons were able to do all they hoped to do! At approximately 1:30, the second team of doctors began to work on his bladder sphincter issue. During this rather simple procedure of opening a new ‘leak’ hole in his bladder, his stats began to fluctuate with his blood pressure dropping. They gave him a transfusion and ascertained that he does have two holes in his heart (I won’t bore you with technical terms AGAIN!); basically, he has an opening between the atriums in the top portion of the heart and an opening in the lower portion between the ventricles. But, in short (okay, this update isn’t that short, sorry), he came through the second procedure okay, not as strongly as the first, but he is with us still.

We are being told that he should come off of the ventilator in 3-4 days and will be assessed for progress next Monday. This Wednesday, they will be assessing his heart with at least an EKG and perhaps an echocardiogram.

God in His good pleasure has seen fit to bless us with more time with Jace. Grateful doesn’t even touch our emotions. We know Jace has a long road in recovering from just this surgery, and according to the world will never be ‘normal’ or live long, but it just doesn’t matter what the world thinks. This whole day, as we waited in relative peace for the outcome, we KNEW God’s will was being accomplished whether our little Jace lived longer here or died. Our other pastor at Christ Church, John Carroll, visited this afternoon and shared of our hope in Heaven. Never more has that hope of complete healing in Heaven been so powerful an image as we view this miraculous gift from God in little Jace. We all need that Healing Hand of our Heavenly Father, for we all are imperfect on this earth. As Francis Schaeffer’s reminds those of us who know the Savior, we can only live when we first reject our flawed self, then die to self, and are raised in Christ anew. Galatians 2:20 has always been one of my favorite verses; maybe I’m beginning to understand its meaning just a little. “I have been crucified with Christ; it is no longer I who live, but Christ lives in me, and the life which I now live in the flesh I live by faith in the Son of God who loved me and gave Himself for me.”

We love and cherish you all. Thank you for your faithfulness in prayer for us.

Blessings,
Kathy for the Harts and Steinhauses.

April 5, 2008, 12:34 AM: Jace's two operations

Our God reigns and His grace is sufficient for all of our needs. We are daily being renewed and reminded of God’s power and His tender care through the ministry of this little guy by the name of ‘healer’ and ‘warrior’, Jace Garrett Steinhaus. Jace is still with us. Are we showing little faith that we are utterly amazed at his presence with us still? I don’t think so, for all of us are living with expectation for whatever God has plans to do. We don’t pretend to understand His ways, but this experience is teaching each of us to praise him in ALL things. I’ve been rereading Francis Schaeffer’s True Spirituality for my year 3 World view class, and never more has the meaning of that phrase ‘praise Him in ALL things’ impacted me more. All things, my friends, even if the world says those ‘things’ are ‘horrible’. To glorify God is our first order of business.

Although very delicate and weighing only 3 lbs, 12 oz, Jace is tenaciously clinging to this world. Today, he was more alert and even fussy, just like a much more healthy baby. He sleeps so often that to see him cry and express his displeasure while Madelyn and I were ‘babysitting’ was a joy. Aren’t we totally silly? His dad even videotaped him pitching a minor fit tonight while Lauren had the pleasure of bathing him herself for the first time. I wish I’d been at the NICU to witness that chaos! Yesterday, several nurses, who had not been in attendance during the week, came by expressing amazement that he is still with us and doing relatively well considering his many issues. I am convinced he is still here by God’s grace, parent-love, and the many hours he sleeps on Lauren’s chest.

This Monday morning at 7:30, Jace will undergo a 3-4 hour surgery in an attempt to repair a few organs allowing him to go home on hospice. The goal for Jace is to have the experience of leaving the hospital to spend the rest of his time hopefully at home with his parents. To go home, he must be able to have some method other than peripheral IV’s to receive nutrition. Jace did go through two grueling hours of the insertion of a PICC line yesterday (very similar to what a chemo patient receives for ongoing chemo treatment or nutrition). This Peripherally Inserted Central Catheter is inserted through a vein in his hand and is threaded through increasingly larger veins until it lies in the superior vena cava near the heart. Its use is for more permanent IV nutrition while healing from surgery.

Jace will have a team of doctors attempting two separate operations. Monday’s surgery, at the very minimum, will sever the connection of the lower portion of his esophagus (food tube) to the trachea (wind pipe) and insert a gastric tube directly into his stomach allowing him to take breast milk. This repair is of primary importance and will be done first. The gastric tube is easy to maneuver, when compared to IV infusions, allowing Lauren and Dan to more easily feed him at home. But, if his heart is holding up well, and he seems to be tolerating the anesthetic, they are going to attempt to connect the two portions of his esophagus AND try to open the ‘valve or sphincter’ between his bladder and urethra (tube leading from bladder to the outside) so that he can have his catheter removed. If the instruments are too large for this bladder sphincter repair, the urologists plan to open a small ‘drain hole’ allowing leakage of urine directly into his diaper to prevent urine from backing up into his already compromised kidneys. This procedure has the high-falootin’ name of a vesicostomy.  As with most surgeries, we are being told that he could die during the procedures. We know that in Jace’s case, this possibility is higher than average.

We thank you for your continued prayers for Jace and for us. Our prayer is that whatever the outcome of this surgery, God is glorified by all we do. We would love to have all of the above-mentioned repairs accomplished successfully and for his recovery to be rapid, allowing dismissal from the hospital in the next two weeks. Jace’s stay may be short with us here on earth, but already he has amazed us by being around this long and blessing our lives so much. What is it about a baby that by sitting and staring at his sleeping countenance, we are not bored but soothed and blessed? As Lauren said today, “it’s MUCH better than watching a movie!”

Many blessings,
Kathy for the Harts and Steinhauses

April 4, 2008, 9:37 AM

As Jace continues to labor for breath and his heart slowly winds down, this wonderful hymn a friend sent seems incredibly apropos:

Breathe on Me, Breath of God,
Fill me with life anew,
That I may love what Thou dost love,
And do what Thou wouldst do.

Breathe on me, Breath of God,
Until my heart is pure,
Until with Thee I will one will,
To do and to endure.

Breathe on me, Breath of God,
Till I am wholly Thine,
Until this earthly part of me,
Glows with Thy fire divine.

Breathe on me, Breath of God,
So shall I never die,
But live with Thee the perfect life
Of Thine eternity.

Amen.

Edwin Hatch, 1886

I’m praying these words for those of us who will be left to grieve for little Jace not being with us on this earth, but also for Jace himself. He will have life anew with the Lord, and his little broken body will be made whole. As I watched and comforted him yesterday for the precious 30 minutes I had with him in the NICU, I kept seeing this incredible multi-faceted picture of Jesus comforting little Jace right now in his discomfort from tubes and improperly functioning body parts, and of Christ’s comfort to our precious daughter and son-in-law, who know that Jace will be made whole one day. The world looks at Jace as imperfectly made, but even in my sorrow of not having the privilege of watching him grow up, of my not even being able to hold him on this earth, I see him as completely whole and perfectly made by our Lord. I think we all must cling to this knowledge as we watch him struggle to live.

But, I must tell you that this little guy is living up to his name, Jace Garrett. Garrett in general has a warrior connotation, and he is proving to be a fighter. We thought the Lord would take him home late Monday afternoon/evening. We know his little heart is failing, and on Monday afternoon, his respiration became very shallow. The doctors were giving them no hope. Lauren held him literally all evening and night, and by morning, he was still with us; his stats looked relatively better than any he’d had on Monday. We continue to pray God’s will and His best for this precious little one. Letting him go is hard, but we have been gifted for so much longer than we expected with Jace’s life. I had the sweet privilege yesterday of catching two tiny smiles as Jace peacefully lay in REM sleep. Because he was doing a bit better, Lauren and Dan left momentarily to take showers and check out of the Ronald McDonald house, which they must do daily, reapplying each afternoon for a room for the evening; so far they’ve been blessed to have a room the last 6 nights. Grandpa Steinhaus and I sat by Jace’s beside enjoying his tiny cries, sweet dreams, and fluid movements. He studied each of our faces and KNEW we were NOT his parents, hence the cries, but he is easy to soothe, especially if you rub his feet and legs! Call it ‘grandma love’, but I truly know the Holy Spirit is bringing him comfort and surrounding his parents with strength supernatural.

Thank you for the prayers and emails, dear ones. Please forgive me if I don’t respond to each note. I’m trying to continue my teaching of my six homeschool classes, but when I must leave quickly or cancel, everyone has been so gracious to understand. Thank you for your continued prayers for all of us.

Please be praying that today the doctors will work with the pediatric hospice program to work out a plan to allow Dan and Lauren to bring little Jace home. They would rather he pass away at home than at the hospital, if it is the Lord’s will, but time is running out. Even after I left the hospital yesterday, he had two near ‘crashes’. Dan has not gone back to work making today the 10^th day (almost two weeks) away from work. Pray that he can work out some way to care for both his job and his wife and son, and that medical insurance would cover much of the expense. Of course, medical bills are mounting, and I know that is a concern for Dan, too. Both Lauren and Dan are nearing exhaustion; please pray for renewed strength and wisdom. And for us, as the grandparents, pray for our wisdom in knowing the best way to minister to them, and yet, not get in the way.

I’m so amazed and humbled at the gentleness and competency of both my daughter and son-in-law in handling Jace’s medical needs knowing that this time is their only time to be with him on this earth. Continue to pray for Lauren’s health. She is thin, still bleeding, and very tired, but Danny INSISTS on pushing her around in a wheel-chair when they leave the NICU, to much eye-rolling on Lauren’s part. I wish I had a picture of her pushing her own EMPTY wheel-chair into the NICU, because Danny happened not to be around at the moment. In the midst of all the heartache, it was really comical. She looked like a kid who had just eaten the best piece of chocolate, her smile was so cheeky.

Many, many of you have asked for their new address and best how to help. Praying has been the most incredible help. Sometime later, testimonies sent to me of how Jace’s Journey (my sister-in-law’s suggested ‘book’ title!!??) has impacted lives would be welcomed, so that some day (when they are able) Lauren and Dan can see the sweetness of Jace’s life in a concrete way. I may just ‘save’ them on my computer at this stage.

I know this journey will not just end with Jace’s passing, so continue to pray for healing and an even stronger marriage for Lauren and Dan. We are already praying that the Lord blesses them with more children, although none will take Jace’s place, of course.

Again, dear ones, thank you for ‘standing in the gap’ with us.

Lauren and Dan’s address: 15015 W. Airport #323, Sugar Land, TX 77478

Blessings,
Kathy for the Harts and Steinhauses

March 30, 2008, 8:14 PM

Dear Ones, as of 6:00 this evening when we left TCH, little Jace was doing reasonably well, breathing on his own. When we left him he was gurgling and cooing faintly for now he can make noises since his vocal cords are not being hampered by a ventilator. We are praising God for this amazing gift! He has a fighting spirit. I’ve attached two photos from today (I’m sorry for the darkness in the room, but we can’t use a flash). The tube you see in his mouth is in the upper part of his esophagus that ends in a blind sac. His mucus secretions have no place to go as ours do when entering our stomach, thus he still needs something to suction him out. He is on a bit of oxygen from a tiny cannula entering his nose, and his breathing is more labored now that he is off the machine. However, we know that if the Lord takes him tonight or tomorrow, it will be in God’s good timing. We are so very grateful for this extra time for Lauren and Dan to be with him. If we could all stay in that room, we would never leave! Lauren and Dan were exhausted but smiling with relief over this miracle. Continue to pray for the doctor’s wisdom as we all work to get Jace home if it be the Lord’s Will. Tomorrow, we will know what the next step is to get him better nourished. He has lost a little more weight and needs new IV lines and a gastric tube inserted into his stomach or small intestine for better feeding. His heart is weakening, but he is still here with us. God’s good gift. Pray for comfort for Jace and his dear parents. May they all rest well tonight.

Thank you for your continual prayers for us, dear friends.

Blessings,
Kathy for all of us