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.