Final Blog Entry From Hillary

First off, thank you so much for your unending prayers. We so appreciate everyone’s incredible support and humbly ask that you would continue to hold Luke close in prayer.

We have had an amazing couple of weeks. According to our pediatrician, at this point in time Luke looks and is behaving like a very typical newborn. She said that if we hadn’t had the MRI in the NICU, she wouldn’t have had any idea that he was missing his corpus callosum. As we settle in with 3 kids (if that’s physically possible) we’ve been able to leave the house a bit more, we’ve gone to a lot of follow-up doctor’s appointments and have been enjoying life as a family of five.

Luke is very easy-going, happily puts up with the constant hugs and kisses he gets and loves his baths to the point of falling asleep during each one. Danny has deemed Luke as his “buddy” and would much rather hang out with him than his little sis who “messes up everything!”

Katie has a sweet spot in her heart for her baby brother, and I often find her kneeling over a sleeping Luke and saying in her sweetest voice “it’s okay, Mommy’s here.” After explaining to the kids that God make Luke really special by giving him six toes and that he may need a lot of extra love, Danny decided that he too had six toes when he was born.

We remain hopeful that Luke will develop normally as our faith has taught us to remain hopeful in all circumstances. We will know more in the months to come and will be looking for different developmental signposts from Luke. He is also going to start receiving occupational therapy as more of a preventative measure.

This past week I read such an incredible blogpost from the mother of my inspirational and dear friend Katherine Wolf. In it, her mom referenced a verse in John: “As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.” (John 9:1-3)

I was so touched by her post and shared this verse with Bob after reading it. Bob and I had read this before but had yet to think about it in relation to Luke. It is such an incredible verse and we feel it’s so applicable to us. In the nearly six weeks since he was born, we know from many of you how he has touched your heart and increased your faith. He's done the same for us. Pretty cool stuff for a baby who can’t even stay awake for more than 30 minutes straight. We will continue to pray that God’s work would never cease to be displayed in his life.

On Sunday, we ventured to church for the second time since Luke was born. As the church does just once a year, the end of the service was set aside for those who need healing to come forward and be prayed over. Not like crazy televangelist stuff, just a low key opportunity for extra prayer. Our incredible associate pastor, Pastor Care, prayed over Luke and anointed him with oil (which she was also able to do with him while he was still in the NICU). In her prayer, she referenced the same verse from John as above. Another verse she prayed is one of my favorites from Jeremiah 29:11: “For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.”

Another dear friend of ours, Allison, blessed Luke with a huge bag of diapers – each diaper has a label with Scripture on it. When we got home from church, I changed Luke’s diaper and the new diaper that I grabbed was labeled with Jeremiah 29:11.

We are so encouraged and know that God is going to teach us more and more as we grow closer to Him.

For the time being, we are going to cease posting updates on the blog but we will continue to periodically update our new family website with photos. We know that many of you may want more regular updates, and we’d encourage you to just email or call us directly. We’d love to hear from you.

Thank you again. We credit your prayers for all the blessings we’ve experienced over the last two and a half months.

The Challenge Ahead

One of the things we've had plenty of in the last two months are diagnoses. We quickly learned that they come and go, only valid until the next test, which would usually prove the previous one wrong anyway. Because of that, we didn't want to share too much info about some of Luke's longterm issues and add drama where none was needed. From our perspective, Luke's most pressing needs once he was born was his ability to stabilize and then thrive.

Thanks to everyone's prayers, we have witnessed Luke's truly remarkable recovery and transition to a totally normal life at home, despite the fact he wasn't even supposed to be born for another two weeks.

His long term picture remains a bit unclear, but we wanted to share what we know and appreciate the fact that you will continue to hold this little guy close to your heart.

A few weeks ago while Luke was still in the NICU, doctors gave him a brain ultrasound and noticed an abnormality that led them to give him an MRI. Neither of us were present for the test and it made for a rough night as we had to wait until the next day for results. The next day the doctors had a chance to look at the film and diagnosed Luke with agnesis of the corpus callosum. The corpus callosum is a thick band of fibers that essentially connects the right side of the brain with the left side.

It's a fairly rare thing but not so rare that no one had heard of it. The effects of not having the corpus callosum vary greatly. On one end of the spectrum are people who live functional lives and may not even be aware they are missing it. On the other end can be various forms of retardation.

As far as where Luke falls on this scale, it is impossible to know at this point. All we can really do is rule things out as he grows and develops. Thanks to some wild chromosomal test, we learned today that Luke's condition is all part of a larger genetic syndrome called Greig Syndrome, of which he has some but not all of the typical conditions. Feel free to look all these things up online and then get scared, as that's what we did. But again, no one can truly predict where Luke will be in six months or one year or ten. Maybe he'll be slow to crawl and walk... but maybe not.

The first few days with this news were tough, but the Bible talks about how God gives "a peace that transcends understanding," and that has 100% been the reason we feel so much hope about the future. Luke is such a cool kiddo, who has fought through so much to be here. We feel up for the challenge, and also encouraged by how he has already proven everyone wrong time and time again.

With such a wide range of possibilities, we are of course praying for the best possible outcome and won't put limits on what God can do in any situation. Hillary has often said that she wanted 5 kids -- insert me shaking my head "no" here -- and once Luke's situation became clear, we agreed that God may be giving us a baby who'll need 2 or 3 kids' worth of love.

First Week Home

Luke has been home almost a week now and has brought so much joy to our house. He's eating well, sleeping well and putting up with the not-so-gentle love pats from his sister's meaty paws. Danny is much more gentle, but has flexed his muscles elsewhere, the worst coming when he stuffed an entire roll of toilet paper in the potty.

We have one more appointment this week and so continued prayers on that front. After that, we'll be able to give a better long term picture for some of the extra hurdles he may face along the way. But based on the first week, he's off to a great start.

Home!

A few shots from a blessed day:

Leaving Luke's pod in the NICU.

Danny excited to hold his little brother for the first time.

Reason #758 why Katie will not be left alone with Luke.

Also, Luke passed his hearing test today which is more great news! When we are able to provide more details about some of Luke's possible long term health issues, we will do so since it's obvious to us that your prayers helped him thrive so quickly over these last 11 days (and kept him secure for the 6 weeks before that).

For Real?

Today Luke lost the feeding tube in his nose. Tonight he'll be losing the PIC line in his leg. And tomorrow morning he'll lose the 24-hour nursing care to which he's grown accustomed since we arrived at UCLA on May 3rd.

Thanks to Luke's incredible progress with feeding and stability the last 3 days, we received discharge papers to take Luke home Wednesday morning.

As you can see in Luke's picture on the left, he was just as shocked as we were by the news.

Actually, he's rubbing his eyes after surviving a rough eye exam. Tomorrow they'll check his ears and we'd love specific prayers for his hearing and continued prayers for his long term prognosis.

But the short term is obviously OUTSTANDING, and we can't wait to strap the kid to the roof rack and take him home.

Lean, Mean, Bottle-Feeding Machine

Two days ago we asked for prayers that Luke would see some great progress in both his ability to eat and the volume he was able to take.

Done and done.

Today (Monday) we arrived at the NICU to see Luke sleeping happily in a standard delivery room bassinet. Unlike our other two kids, he never had the chance to use one until now. On top of that, the oxygen is his nose was gone... the jaundice light and mask were nowhere to be seen... and next to his bed was a 40cc bottle, which Hillary had the joy of feeding to him.

He even stayed awake for some pictures before heading back to sleep.

With these encouraging signs, we're hoping (and they're hinting) we could get Luke home within a few days.

With that on the horizon, our attention turns to some larger questions. Over the last nine days, doctors have given Luke about every test one can think of, and so our big giant overarching prayers are now focused on those results, which have more to do with Luke's long term health than his short term stability. All we can say for certainty is that Luke's strength is truly incredible and in many ways dwarfs our own.

Please pray for his long term health and God's healing touch. And thank you again for all the support. We know for sure he would not be making such rapid progress without all of you.

Luke.... I Am Your Father

Happy Father's Day

The results of your prayers are on display at UCLA where the day after asking for extra prayers for Luke's feeding, he successfully took every other feeding today VIA THE BOTTLE. Nurses also bumped him from 10 cc's two days ago to 20 cc's yesterday to 30 today which is fantastic. Fifty cc's is the goal and these are huge strides.

On other positive fronts, his oxygen levels have been turned down and they hope to have him permanently off the photo light tomorrow.

We continue to pray for improved feeding and also for some upcoming test results regarding Luke's longterm health.

Week One In the Books...

Luke continues to do well in so many ways, just seven days from his rocky entrance into this world. Below are a few good pics from the last couple days.


The big prayer request at this point is that Luke would start to drink milk from a bottle rather than the not-so-glorious tube up his nose. They have tried a handful of times with the bottle and he tends to drink a sip or two, get excited and then, exhausted from the excitement, fall asleep. And really, which of us haven't done that? Over the course of this coming week, doctors are hoping to increase the amount of milk Luke receives as well as the amount he's able to handle from a bottle. Should he pull this off, he will only need to be weaned from the extra oxygen in his nose before being stable enough to come home.

June 18th,

Rather than waste a lot of space with words, we just wanted to share some pictures from today, Luke's first full day off the ventilator. His growing stability and healing is such a blessing and the answer to so many prayers.

The Ventilator is Off!

(STANDBY NOT VENTILATING!)

Praise God!

While Bob and I were visiting the NICU this morning, the nurse practitioner decided that Luke's jaundice was no longer a concern and within moments the photolight was turned off and his mask was removed! In even bigger news, Luke's vent was turned completely off this afternoon! What a beautiful day filled with so many wonderful steps forward. We are closer to bringing this little guy home and we can't wait. Please continue to pray for him and for whatever the future may hold.

Luke means "bringer of light, morning"

I read Isaiah 60:1 the day after Luke was born "Arise, shine, for your light has come, and the glory of the Lord rises upon you."

Jeremiah 1:5 "Before I formed you in the womb I knew you, before you were born I set you apart."

Our Little Fighter

In so many ways, this was a very encouraging day.

*For the third straight test, Luke's heart shows that the enlarged right ventricle continues to shrink back toward a normal size. With every test, cardiologists are more and more hopeful that it will fully correct itself.

*Because of this, Luke's lungs are getting stronger as is his breathing, so much so that when we left the NICU today around 2:30pm, the ventilator was only doing about 25% of the work! Luke's head nurse said they are planning on weaning him "aggressively" over the next day and hope to have him OFF THE VENT altogether within a few days. Unbelievable stuff.

*For two days now, Luke has been receiving 24/7 photolight treatment to combat jaundice, which is so prevalent in all newborns but especially in preemies who can't yet ingest breast milk. The bummer is that the poor kid has to wear that funky-looking white blindfold/mask thing so he doesn't stare into the light. That said, his numbers are improving and hopefully the light can be switched off in a few days too.

*Despite the picture above, they're really doing very little to Luke at this point. The IV in his left hand is gone and his umbilical line will likely go tomorrow, meaning he'll only have the vent and the PIC line in his leg.

While there are so many blessings and answers to prayer already, there remain some other longer term concerns and we ask for continued prayers with those over these next few days.

June 15th

We checked out of UCLA today with a car full of stuff, and were greeted at home by two ecstatic kids and a sign on the door that Danny made reading, "Happy Home!"

For Luke, it was, as expected, a day full of more tests and ultrasounds, followed by more tests after that. Hillary went back to the hospital tonight to find him resting peacefully. We hope to have some more answers tomorrow, and we continue to ask for your prayers for those upcoming results.

Day 2: Onward and Upward!

First, we're so thankful and humbled by everyone's encouragement and emails. We're also indebted for all of your prayers, which we absolutely credit for the progress and hope we've experienced today.

We were able to see Luke this morning around 10 (and many times since), and while we were there the cardiologist, who informed us of Luke's heart issues yesterday, stopped by again to see the little dude. He said that he had a chance to look at tests run on Luke from yesterday afternoon and was happy to report that the right side of Luke's heart indeed appears to be shrinking. The more it shrinks, the better the valve will work and the less blood that will flow backward through the ventricle. His hope and our prayer is that it continues to shrink and the problem will fully correct itself, possibly within a matter of days! If Luke can get there, he'll be able to breathe even better and could theoretically be weaned from the ventilator. This of course would be a giant step forward.

Tomorrow (Monday) they'll get back to poking and prodding Luke and doing ultrasounds from his brain to his feet to see what else they can learn. This is all very typical stuff for a kid with some of his issues.

The best part of our day was the end of our morning visit. Since he was born, Luke has always had his eyes shut tight. Even his nurse said she had yet to really see them open, but while we were there, he woke up and opened his eyes for a few minutes and checked out the crazy world in which he finds himself. It's hard to tell his eye color, but with that tape on to hold the vent in place, I think he's kind of got a Colonel Mustard look going.

While we're hoping to spend as much time at the NICU as possible with Luke, we're also very excited about being released tomorrow, going home, being a real mom and dad, sleeping in a real bed, eating home cooked meals, and having the Golf Channel at our Bob's disposal just in time for U.S. Open Week.

Now What.

Consider it pure joy, whenever you face trials of many kids, because you know that the testing of your faith develops perseverance. -- James 1:2,3

This is tough. There's no gentler way to say it. It's been about 19 hours since Luke was born and Hillary and I will be heading to bed in a still empty hospital room. Down the hall we can hear the cries of babies and would love nothing more than to have our own kid's wails wake us up at 3 in the morning.

At 4pm this afternoon we headed over to see Luke again and spend some quality time there, but he was in the middle of having a PIC line inserted so he could be given more nutrients and carbs. All we could see around his little bed were a few nurses in blue scrubs.

Tonight around 10 we called the NICU to see if we could stop in and were told that the PIC line didn't take and after waiting a few hours, they were about to try again. So we'll wait until the morning and go from there. In our baby's first day of life, we've seen him for a total of 45 minutes.

It's a cliche to say that we don't understand what God's larger plan is for all of this. But like the verse at the top, we do have faith that one of the end results will be a strength and perseverance we wouldn't have had otherwise. No one wins $10 million and grows closer to God. You grow through trials, through putting your faith to the test and coming out better on the other side. And funny enough, that relationship between God and us is paralleled in our relationship with Luke. There he sits getting poked and prodded, and obviously can't begin to know what's going on or why. But we know those tubes and sensors and messed up PIC lines are steps along the way to making him stronger. They're hurdles that will ultimately give him the best chance to persevere and live a full life.

For now, I think our goal is just to have that same child-like faith. Someone bigger and stronger is in charge. The best thing we can do is just close our eyes and trust him.

Luke Palmer, Day 1

Here's a picture of Luke shortly after birth. He is fairly stable, breathing 1/2 on his own, 1/2 on the ventilator. He's on an IV helping give him fluids. Over the next week, doctors will be busy checking him out from head to toe and checking regularly on his heart to see if the enlarged right side shrinks down on its own. There could be other yet to be discovered complications, but the heart remains our primary prayer. As for the extra digit on each hand, that appears to be a fairly easy fix, but a low priority at this point.

Hillary is already up and running around, hardly acting like a woman who gave birth less than 12 hours ago. I on the other hand no longer have to pretend to be strong and have taken to ugly sobbing on a regular basis. Sometimes Hill joins me, but they're not really tears of sadness, just good ol' emotional breakdowns brought on by exhaustion and relief that we got the kid into the world as best we could and now we just have to wait and see. Hopefully Hillary will never again accuse me of not sharing my emotions.