strength for today

3 Days Post-Op

2010-10-04T10:00:00.002-04:00

Well, we've been home for almost 48 hours now and Samuel seems to be doing really well. He is certainly recovering better than from his most recent other surgery (3 weeks ago). There doesn't seem to be lots of pain - more annoyance at either having his arms restrained or his head wrapped, or both. Despite all that, he has slept well both Saturday night and last night.

Samuel is out of school all this week so that means Sara is at home with him most all the time. Trying to keep an eye on him so that he doesn't do any harm to his incisions is a pretty draining task, so prayers for her endurance and energy would be much appreciated. We have sweet friends who are feeding us and checking in on us - we are grateful. I'm not sure how many times I've said this over the course of this blog, but I can't say it too much ... I can't imagine going through any of the stuff we've been through without faithful and loving and supportive family and friends. Jesus has been so good to us (and to Samuel) by putting us in such a community.

home and resting

2010-10-02T20:18:00.002-04:00

We made it home around five o'clock this afternoon. It's always nice to get home and be in our own space. Kiddos are down and Samuel's asleep as well, hopefully for the night. Incision is looking good (to my untrained eyes) though it's covered up nicely by steri-strips. Indeed, the Lord has given us strength for these days and we are grateful to him for it. It is a very real comfort to know that in the midst of so much uncertainty there is One who and whose character is sure and knowable and certain. Resting in him tonight and with a prayer that you might be as well.

~ grant

Heading Home

2010-10-02T13:09:00.003-04:00

Samuel is doing fairly well, though he really doesn't like the neoprene Velcro wrap thing that's keeping the gauze on his ear. He reaches up and pulls it back over his head or down over his eyes. Funny boy. So, unfortunately for him, we've had to restrain his arms with something they call "Welcome Sleeves" that keep him from being able to bend his elbows. Welcome? By whom? Anyway, he's finally given over to sleep again.

We've been discharged and are hanging out at Sara's brother's house right now for a bit. Big kids have had some great cousin time yesterday and today. We'll be heading back to Greenville probably within an hour or so, once we get our stuff together.

Overnight Samuel slept from 10-11:30 and then from 4-6:30. (I've never watched Australian rules football before, but it sure was interesting at 2 in the morning.)

Well, it seems we've got another surgery behind us. Please continue to pray for Samuel's recovery: infection free, incisions staying closed, not fighting it too much. Thank you for your faithfulness and support. Indeed, the Lord has been good to us.

Sleeping

2010-10-01T23:32:00.004-04:00

Whether it's the Lortab, the events of the day, the fact that it's the normal sleeping time or the combination of all of it, I don't know ... but Samuel is sleeping. We're right about 4 hours post-op now and in a room - well, a surgical observation room, which is just a stone throw (think my 4 yr old son's stone's throw) from the room we waited in all day and no larger. Whatever, at any rate, Samuel has done fairly well. He's not fussed much and his O2 levels have been great. He fought sleep pretty hard for about an hour or so and then finally gave in a little before 10. It's 11:30 now and I tried to dose a bit ago but now sleep is evading me. Sara's back at her brother's house - hopefully sleeping.

Plan is to get an X-ray to confirm good location of the implant (S.O.P.) and then be discharged sometime tomorrow, most likely in the morning if the Dr likes what he sees. Then back home to Greenville. Will try to post again before we leave Atlanta. Now to try for some sleep ...

But first, here's a little before and after for you ...

Done.

2010-10-01T19:15:00.002-04:00

Just met with the surgeon and the audiologist. Surgery's done, after 5 hours. They got the device implanted and have gotten good responses from the electrodes that were placed!

Samuel's anatomy was a little trickier than normal. So not only did Dr Hermmann have to go from a different angle, he also had to make some additional incisions through the ear canal. It's all terribly complicated, but suffice it to say that the device is in and appears to be placed well. It's not actually turned 'on' - they just tested it now and won't turn it on officially until 2 weeks from now if all is well from a swelling and healing standpoint.

So, we're waiting to get to see Samuel now as he's in recovery. His head will be wrapped and should stay wrapped for as long as he'll less us keep it.

Thank you for upholding us today. We have needed it. Please do now pray from Samuel's recovery and our care for him. Will update again tonight, if possible.

They're Gonna Put It In

2010-10-01T17:41:00.004-04:00

Just heard from the OR and they are going to implant the device! We're almost 4 hours in and they're expecting it'll be at least another hour. Hard to believe that this surgery will wind up taking longer than open heart surgery!

I'm excited to hear that the surgeon's going to implant it, but we are getting weary here in our little pre-op waiting room. Chocolate goodies, fun magazines, The Fellowship of the Ring, The Ryder Cup, From Fear to Freedom and games on my phone have been keeping Sara and me occupied. And I'm sure the prayers of many people are keeping us supported. Thank you, Jesus, for all these good gifts.

3 1/2 hrs in

2010-10-01T17:17:00.002-04:00

and still waiting. We've heard twice from the OR staff over the phone, but the extent of what they've told us is "Samuel's doing OK." Still not sure whether or not the surgeon was able to place the implant, but we're assuming so (albeit hesitantly), as it's taking so long.

Will post again once we're out of recovery and settled into our room for the night - hopefully in 2 or 3 hours.

Just took him back

2010-10-01T13:51:00.002-04:00

Prior surgery ran long, so they've just now (1:45) taken Samuel back to the OR. The Dr. said that 3 hours would be likely with Samuel. He'll know whether or not he can proceed with the implant after about an hour and a half or two hours, most likely. So now we wait.

We've begun memorizing Proverbs 3.5-6 with the big kids. It's simple, but not altogether easy to live in light of. We've only made it through the first two phrases. They are these ...

Trust in the Lord

with all your heart

Thank you for your prayers for us as we seek to do this through the hours of waiting.

Off to Hospital

2010-10-01T09:43:00.004-04:00

We're off to the hospital here in about 10 minutes. I'll update as I can this afternoon. Thank you for yor continued prayers and encouragement. Since I mentioned it yesterday, we did get Samuel's hair cut this morning. And he actually did great - a sweet mercy from our God (whose compassions never fail and whose mercies are new every morning).

Here's a picture of our kids from about 3 minutes ago:

Cochlear Surgery, Friday @ 12:30

2010-09-30T13:34:00.003-04:00

Sara and Samuel headed down to Atl this morning and met with the surgeon's nurse practitioner for his pre-op appt. That went well and we got a few important details.

Samuel is the first afternoon surgery tomorrow. So his surgery time isn't until 12:30. Which is nice, in that we don't have to be there until 10:30 tomorrow morning. However, the poor guy will have to go that much longer without food. Trade-offs, I guess - like everything in medicine.

So ... that's the plan, at this point. They weren't willing to shave all of Samuel's hair for us. We'd been waiting to give him a haircut 1) b/c he hates it and 2) in hopes that they would just shave all of it since they'd have to shave some of it. Alas, we'll have to cut it tonight since he won't be allowed to get his head wet for a week and will have a pretty heavy bandage on part of his head for 3 days. Fun times.

Thank you for your prayers for us. To know that we are not alone, but are being supported by others, is a great comfort to us. The end of Isaiah 40 was good for me to read this morning and I pass it along to you now in hopes that God would use his word in your life today, even as he has used it in mine.

Why do you say, O Jacob, and speak, O Israel, "My way is hidden from the LORD, and my right is disregarded by my God"? Have you not known? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

Isaiah 40.27-31

Cochlear Implant Surgery

2010-09-27T14:09:00.003-04:00

After multiple reschedulings, Samuel is slated to have Cochlear Implant Surgery this Friday, October 1st, in Atlanta.

He has a pre-op appointment Thursday morning and then will be the first case Friday morning. The plan is to implant the right ear, as the left ear has no auditory nerve. However, there is a bit of concern from the surgeon that he won't be able to implant the right ear either because of some structural abnormalities in Samuel's ear. The abnormality in particular has to do with the facial nerve that runs over the cochlea: it's splayed and not a nice bunch of nerves, so there is a significant risk that proceeding with the implant could permanently damage that facial nerve - which would lead to palsy and difficulties with speech and eating.

So, we are hopeful that the surgeon will be able to work around the nerve (or whatever other anomalies he finds once inside) and successfully implant the device into Samuel's cochlea. The surgery is a 2 hour surgery and the surgeon told us that he won't know for sure if he can implant until 1 hr and a half in. So Samuel's recovery will be the same, either way. While the Cochlear Implant surgery is often an outpatient one, they will keep Samuel in hospital overnight Friday just to keep a closer eye on him.

It's hard to summarize how we're feeling about this. Desperately hopeful, maybe? Hopeful that it would be successful and that in time Samuel would be able to 'hear' us and develop speech and we'd have another form of communication with him. But not too hopeful in case it doesn't work. The greater the hope the rougher the crash if not fulfilled? Marginally terrified? The 'what-ifs' are many and full of fear. The last surgery, three weeks ago (a bi-lateral orchiopexy - to descend his two undescended testes) had a rough recovery (for Samuel and for us) and we're still dealing with some of the results of that one. You just never know with surgery ... and especially one that involves the brain (or at least areas pretty darn close to the brain!).

So, we'd invite your prayers for our Samuel and for us. Though 2009 and 2010 (through July) were hospital free (and we are so thankful!), Samuel's had 2 surgeries in the last 6 weeks and we are already tired of the hospital and all that goes along with it. Not feeling real prepared for such a big deal as awaits us at the end of this week.

I am thankful for and trying to trust in God's promise from Isaiah 42.3:

a bruised reed his will not break and

a faintly burning wick he will not quench

Our Two Year Old Boy!

2010-03-02T12:55:00.003-05:00

To borrow Al Michael's call of the 1980 miracle on ice (and since we are likely all going through a bit of Winter Olympic withdrawals at present) ...

"Do You Believe in Miracles?"

"A Miracle" is the only explanation Samuel's Urologist had today for what has happened with his kidneys. For the past two years we have been watching his kidneys because of cysts that were present and because of renal reflux (urine from the bladder heading back up into the kidneys). Samuel has been on an antibiotic for two years solid now to keep urinary tract infections at bay. We have been expecting that Samuel will have to have this problem fixed surgically at some point in the not-too-distant-future.

Last week, Samuel had an ultrasound and an X-ray procedure called a VCUG, in which they insert a catheter, fill up his bladder with a fluid that shows up on X-ray, and take pictures of the bladder and where the fluid goes.

Samuel's Urologist told Sara today that only 10% of patients with renal reflux grade 5 self-correct (that is, without surgery). Grade 5 is the highest and worst and is the degree to which Samuel had it. Now, add to that the fact that Samuel had bladder diverticulita (unnecessary pouches in his bladder) and the chances of his renal reflux correcting on its own were basically nil.

Here's the miracle part ... the results of last week's procedures - there was no reflux and no sign of cysts. It has corrected on its own. We are taking him off his antibiotic. He doesn't need surgery.

You may not believe in miracles. But I believe in a God who rules over all things, even the ureter function of a two year old boy with CHARGE.

This news has nothing to do with us - such blessings can not be earned. God has been gracious to us in innumerable ways. But, so that I do not forget and that you might consider God's faithfulness to our little family, here are a few of the ways God has been gracious to us ...

Samuel is 2 years old! We celebrated this past weekend with a surprise party for Samuel and Sara - whose birthday is the 28th. It was much easier to keep the surprise from Samuel than Sara, but it seems that Samuel had a surprise for us, as well.
God has sustained our family through a journey we would never have chosen and he has gently taught us much about our own brokenness and desperate need for him.
He has never left us or forsaken us though questions and fears and doubts and angry shaken fists have frequented our experience in the last 2 years.
He has provided for all of Samuel's medical and developmental needs to date. Some he has done so through other people (doctors, therapists, in-home caregivers) and others he has taken care of himself.
The people of God have surrounded us with their prayers, their physical support, their encouragement and have endured our fickle ups and downs.
God has deepened our affection for Samuel and his quirks in ways we would not have expected. He makes these faces that only CHARGE kids make that at first we were sort of turned off by - hoping our CHARGEr wouldn't make those faces. But now, we love it and bust up laughing every time he squints his eyes funny and scrunches up his nose.
We have watched our older children embrace Samuel and we have learned much about how to love him by watching them.

God is good. He has been good to us. And I am convinced that any goodness from God we experience comes to us not because of us, but in spite of us and only because of and for the sake of Jesus our faithful savior. I believe in miracles. I believe in miracles because Jesus rose from the dead. If my heart can hope and be at rest - then, to quote Jesus from Matthew 19 -

"With man this is impossible,
but with God all things are possible."

May Jesus be praised.

A Hospital Free Year (in brief review)

2010-01-29T11:44:00.006-05:00

There are numerous factors that have led to me not posting for almost a year now - but one of the main ones is huge. After spending over 50 nights in the hospital in 2008, the Lord gave us a reprieve in 2009 - not a single night spent in the hospital!

There were a few procedures, scans, etc, but nothing that required Samuel being admitted. This way a wonderful break, for which we are extremely thankful! Not having so many events and issues that 'required' prayer from others (I know that's a bizarre phrase for a pastor to write) I guess we sensed less urgency to get on the web and update the blog. In some ways - that's been a really good thing.

Overall our Samuel's health is well. He gets an occasional cold which is a little more involved than with our other kids, but all things considered he is doing quite well. His primary 'issues' are not currently medical, but developmental. We are looking into the Cochlear Implant, though initial reports are not altogether positive that a Cochlear might work for Samuel. We've discovered that he doesn't have an auditory nerve on the left side, no semi-circular canals on either (they aid in balance), and a lot of stuff that's out of place or missing on the right side. So, the doctor isn't positive yet as to whether or not he wants to proceed with an implant.

Samuel spends most of his time on the floor - navigating all over the place. His therapists have been working hard with him to get him to crawl and spend time sitting up and hopefully, eventually, walking. While Samuel is not always a big fan of his therapists (they do make him work after all!), we sure are - they're able to get him to do stuff we didn't think he'd be able to do.

While he is still entirely G-tube fed, we have begun preparing him for a swallow study. Turns out he loves babyfood (at least the bananas) and seems to be handling very small amounts just fine - swallowing without incident! Pretty exciting!

Our boy is growing and developing at his own rate - we find ourselves celebrating 'small things'; things that for Samuel are huge! Like swallowing and getting in a crawling position. He turns 2 in four weeks! Crazy how fast those two years have gone AND yet how much has happened in those brief two years. I guess that's just how it goes.

I will try to get some videos posted here soon so that you can cheer him on with us and give thanks to our faithful God for his good provision.

Thank you for checking in.

Pressing on.

A picture update

2009-03-09T04:59:00.012-04:00

Ahem, well. So it's been four months now. And for those of you that know that it's been four months, not really much I can say, but please forgive me and I am sorry.

We will post again soon with more details about how he's doing and what is going on, but in the meantime, may I atone for my sin of negligence with a lot of pictures?

Here are a few from around Christmas ...

We've had some snow in South Carolina ...

"No, really mom, I've having fun!"

But more importantly, on February 27th, Samuel had his 1st Birthday. We weren't always sure if we'd make it, but the Lord sustained us through a very trying year and we are extremely grateful for it.

Sweet boy with his sweet mama

Samuel slept through most of his party

He was able to be awake for the presents

He is able to see some, and he loves light toys.
So ... we had a light toy birthday party ...

While he didn't have any cake (still G-tube feeding only), we did try to put a little ice cream cake on his tongue. He wasn't a big fan, though he was a little curious. Sure tasted different than his fingers or his favorite stuffed animal!

Ever the proud big sister

We are in the process of ordering prints from pictures we've taken over the years in an attempt to actually have some photo albums (not sure if anyone knows what those are anymore, but we like them). Just ordered almost 600 prints, just from 2008. So here are just a few representative pics of the last few months.

just hanging out on the floor

being loved

He's not crawling, but definitely able to skootch away from where you put him down!

Not exactly sure what she was going for here. Maybe an impression.

He isn't sitting up by himself yet as his muscle tone is still pretty poor. He is however, making progress, though, as this picture shows, he tires out. "Can I be done yet?"

Thought I'd sign off for now with a smile from our sweet boy ...

Home again home again

2008-11-22T11:34:00.002-05:00

We were discharged on Thursday afternoon and made it back to Greenville in just under 2 and a half hours. We we are all very glad to be out of the hospital. Samuel's disposition changed pretty quickly and he is much happier at home (well, at least less frustrated, if not altogether happy yet).

He does continue to have some inconsolable episodes but they are less intense and less frequent. We are hoping that infection and yeast stay away as both could literally undo the palate surgery.

Thank you for your continued prayers and support. We are so thankful to have this one behind us and are hoping to not be in hospital again for some time.

hopefully heading home

2008-11-20T06:54:00.002-05:00

While Samuel's agitation isn't altogether gone it is a little less intense and less frequent. He is able to be awake and relatively happy at times, but every now and again he gets quite fired up and angry. They've taken out his IV and we're making progress toward home. He isn't requiring O2 but does have some on with a little water in it so try to keep things in his nose and throat from getting too dry. The surgeon was just in and said unless Samuel has another bad episode we'd be good to head home today around lunch time.

Samuel slept okay last night, though he's been pretty much up since 5 and off and on fussy. I think he might just be getting a little stir crazy and ready to get out of the hospital - might be picking up on that same energy coming from his parents :-)

Looking forward to being in our own space soon. This has been in many ways the hardest hospitalization yet - Samuel having a hard time dealing with the pain. We've needed the strength and endurance of the Spirit. We're so grateful for your prayers.

unhappy camper

2008-11-18T17:35:00.003-05:00

We're with Samuel now and he has been pretty upset - squirming, crying, fighting. Two doses of morphine haven't done a whole lot so Drs have dosed him with something else - loratab - to see if he responds to that better.

There is a good bit of blood around his mouth and nose, it's dry, but there. Surgeon came by and said things look okay and that he'd see us in the morning. Samuel is resting now in Sara's arms, requiring a bit of Oxygen, but he isn't screaming and fighting, which is nice. They've got sleeves on his arms to keep him from being able to get his fingers in his mouth; he's not really enjoying that restriction, but we'll likely have to have those on for a month. Fun times.

Well, we're gonna start trying to feed him a little here now, so I'm going to sign off. More later. Please do pray for his comfort.

Out of surgery

2008-11-18T16:21:00.002-05:00

We're sitting in the room waiting for Samuel to come out of the recovery room.

All have said the 3 procedures went well and that he did and is doing well. We've also been told that the palate surgery is a more difficult recovery and therefore aren't surprised that they've already dosed him with morphine in the recovery room to 'calm him down.'

Haven't seen him yet, but just wanted to get out a quick update that he's come through the procedures well and is in recovery. We'll update again as we're able.

Palate Surgery Tomorrow

2008-11-17T10:08:00.002-05:00

We head to Atl (Children's Healthcare of Atlanta, Scottish Rite) tomorrow morning for another round of surgeries - hopefully the last for quite a while!

Samuel is scheduled to have his initial palate repair, another hearing test and to be circumcised tomorrow morning. We've been told to expect a 2-3 day stay, so we might be back home on Thursday, but Friday might happen as this surgery will radically change the way he breathes - no more holes in the top of his mouth! The PICU might be where he stays depending on how his breathing goes post-op. Please do pray for a quick recovery and no breathing problems.

On another note, Samuel has been drooling like a champ recently and hasn't been able to keep his fingers out of his mouth ... well, dah, he's teething! I went fishing around in his mouth yesterday afternoon, which he didn't really fight me on, and discovered a tooth has already broken through on the bottom. No wonder he's a drooly mess?! Haven't even tried to get a picture as that would be pretty difficult, but thought you'd be interested to know our little guy is growing. He is also up to 17 lbs now. Nice little chunker.

Will update as soon as we can after the surgery. Thank you for your prayers.

Wow, long time no post indeed

2008-10-25T13:04:00.011-04:00

Friends - thanks for checking back in with us. Please do forgive the LONG silence from us here in Beachy-world. The fact that you're reading this is an encouragement to me, a reminder that we're not alone in all this. In some ways there's been a lot of not much happening here - if that makes sense. And in other ways we haven't posted b/c there's been so much other stuff to do and get done.

So ... as has happened a few times in the past, we'll just post some pictures and let them do the talking (for the most part).

Last weekend, all of my family was able to come into town for Samuel's baptism. While they were here we celebrated a lot of things all at once: the baptism, AC's birthday, Aunt Bethany's birthday & Steve and Lori's Anniversary.

While Sara and I were off in NC at a Conference this past week, Aunt Lori and Grammy kept the kiddos. They did a lot of stuff with them, including a haircut and trying new things with Samuel ...

Here are a few pictures of things that Samuel is up to: spending more time sitting up (with help), enjoying his light toy and sleeping sweetly (though rarely for long intervals).

Hopefully here before long we'll post with more details about how life has been for us these last weeks/months. Until then, thank you for checking in and may the love of God the Father be yours.

a few pics (and thoughts)

2008-09-06T14:10:00.004-04:00

Since much has happened since the last blog, I'll keep it relatively simple and try to tell something of our recent weeks' story in pictures ....

Here is Samuel's new lip, 2 weeks after the operation:

While not quite on track age-wise developmentally, Samuel is beginning to roll around a good bit and enjoys his time on the floor - even if he doesn't stay where he's placed:

Samuel isn't the only one with stuff going on. Here are a few pics from AC's and Colin's recent weeks.

first day of school for them this past week (2 day a week preschool):

new bunk beds! no more blow-up air mattress on the floor for Colin (or stealing space from his sister in her bed!):

These pictures really only tell part of the story. We did wind up spending this past Wednesday night in the hospital. Samuel had significant trouble with breathing Wed evening and it was better to be in the hospital being monitored than at home worrying. We were in just over 18 hours and since then he has done much better. Frequent nebulizer treatments are helpful. We think it was brought on by the procedure he had done Wed morning (renal scan). He was sedated for that instead of being under general anesthesia, which seems to have caused an increase in secretions which he doesn't handle well. So, we are assuming there was some aspiration going on, even though the chest x-rays were clean.

At any rate, just a minor hick-up, I guess. Overall and otherwise, I think we are doing fairly well. As noted above, AC and Colin started their school this past week and we are hoping that Samuel will be able to begin at The Wonder Center here in downtown Greenville soon. We are planning on him being there for 4ish hours, 3 days a week. This is basically a day care for medically fragile kids. It is staffed only by nurses with PICU and/or NICU experience. Because of where it is located, Samuel will be able to get his therapies done there as well. So, with these new routines, we hope to get into something of a rhythm in life. We'll see how it goes.

Thank you for your ongoing concern and prayers for us. We continue to be in need of them.

wednesday evening ... and home

2008-08-20T21:33:00.008-04:00

Samuel did okay, considering, overnight. He was up every now and again, but was generally fairly easy to console - especially with the drugs. The hospital had a 'sleep room' that we were able to use overnight. So Sara got a good chunk of sleep the first half of the night and I got a good chunk the 2nd half.

Then, a little to our surprise, we got discharge papers this morning! We got home this evening after a few errands in Atlanta and a stop at the outlets (of course) to two curious older siblings. They were well prepped for needing to be very gentle and that Samuel was going to look different and be a little bloody. They did well - we've got good kids.

So ... the craziness of our August is over - at least we are going to be here in our own house for the foreseeable future. It's been a good August. Full of family and good friends, weddings and vacation. The Lord has been good to us - faithful family and friends to walk with us and for us to walk with. We've had all the strength we've needed for all these days and continue to trust our Father for strength and grace for whatever comes next.

Thought we'd share some more photos for you. Certainly his appearance will continue to change over time as the swelling goes down and the lip begins to push/pull the upper palate back.

Here you can see one of his elbow braces - to keep him from messing with his mouth (which he has just found with his hands the last week or so!).

recovering from lip surgery

2008-08-19T20:19:00.004-04:00

Samuel came through his lip surgery this morning well. He is rather uncomfortable, but is responding well to morphine. During this round of general anesthesia we had several procedures combined: tubes placed in his ears (successfully), lip repair, check for choanal atresia (negative) and hearing test (ABR: left ear - no brain activity; right ear - some). The whole thing lasted less than four hours - which, ironically is more than the amount of sleep we got last night. It seemed like Samuel knew somehow that he was getting ready for a long nap in the morning, so he decided to stay up much of last night.

At any rate, we haven't gotten a definitive word yet on discharge, but we are almost already back up to full feeds again - which is a good thing.

For those of you that would want to see a picture of Samuel's new look, see below. Know that it is a picture taken just a few hours after surgery, so he's a little swollen and bloody. You will also notice the new stylin' haircut - thank you, Aunt Lori!

Thank you for your prayers for us.

before the craziness ensues

2008-08-04T09:19:00.014-04:00

I guess a mere apology (I really am sorry about it) might not quite suffice for the fact that it's been a month since our last post - and July was maybe the 'slowest' month of our summer!

Our last post mentioned a weekend trip to the beach with Anna Catherine and Colin. Well, they loved it! Colin couldn't get enough of being battered by the waves and tossed about in the surf. It was so fun to watch him enjoy himself, coming up sputtering, smiling and looking for more. Anna Catherine was much more content with the sand and looking for sea shells and other fun beach treasures - the waves weren't really for her. Sara and I did enjoy our time away and though we didn't sleep quite liked we had hoped (we did still have two little ones with us after all), it was a good and restorative respite. We are so grateful to the folks that looked after Samuel while we were gone and for the Kapp family on Edisto and their wonderful hospitality to and taking care of us. The weekend away was a wonderful time for us full of memories.

In other news, Samuel has really begun to sleep a little more predictably. He normally ('normally' because he didn't follow this pattern last night) falls asleep between 7:30 and 9 for the night and doesn't wake up until 4-5am. And then he is just awake while we change his diaper and feed him. Then he normally falls back to sleep till 7 or so.

We continue to be able to feed him 7-8 times a day, 4+ ounces each time. While he doesn't necessarily find great comfort in being fed, he is growing and getting bigger - up over 14 lbs now. We haven't had lots of doctors appts as of late - which is a nice change. But have begun some weekly therapy.

A few special things to note for you:

When two women from the South Carolina Deaf Blind Project came out to the house, they were able to get Samuel to respond visually in ways we had thought were not possible! They were able to get him to track objects and follow them, even shifting his gaze from one to another. This blew us away! While shiny and bright things are easier for him to see and we're still not really sure what 'seeing' means for him, we were so encouraged and excited to watch him watching things.
Samuel's next schedule surgery is coming up in 2 weeks. August 19th he goes in for his initial lip repair. The surgery will be done at Children's Hospital of Atlanta at Scottish Rite. They will also be doing several other procedures at that time for which Samuel needs to be under general anesthesia - tubes in his ears, an ABR (hearing test), and checking out for choanal atresia. They have told us to expect a 2-3 night stay.
Our August is nuts! It's full of good stuff: time with family, weddings, etc. But it is FULL of good stuff. Thursday, while Sara drives to St Louis for a wedding that she is in (and I will be sad to miss), I will take Samuel to Atl for his pre-op visits with Plastic Surgery and Anesthesiology. Then Friday I will take the 3 kids up to Tennessee for a week of vacation with my parents and siblings - Sara will rejoin us on Sunday. Then we'll travel back to Greenville on Friday, the 15th, leave our 3 kids here with my brother, his wife and two kids and Sara and I will head on to Edisto Island (just the 2 of us!) for the Kapp wedding. Then back to Greenville on Sunday. Sometime between Sunday afternoon and Monday afternoon, my brother's family will leave and Sara's parents will arrive in town to keep the big kids while we're in Atl for Samuel's lip surgery. Sara, Samuel and I will head to Atl Monday evening since our surgery is set for 1st thing Tuesday morning. Then in Atl till he recovers and comes home. Then I think the craziness calms down a little. In all of this we recognize that 'man plans his way, but the LORD directs his steps.' So, we'll see how it all goes.

I want to leave you for now with a hymn. May it encourage you to rest in Jesus, no matter what comes your way in the days to come.

Be Still My Soul
Be still, my soul: the Lord is on thy side.
Bear patiently the cross of grief or pain.
Leave to thy God to order and provide -
In every change he faithful will remain.
Be still, my soul: your best, your heav'nly friend
Through thorny ways leads to a joyful end.

Be still, my soul: thy God will undertake
To guide the future as he has the past.
Thy hope, thy confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: the waves and winds still know
His voice who ruled them while he dwelt below.

Be still, my soul: when dearest friends depart,
And all is darkened in the vale of tears,
Then shall you better know his love, his heart,
Who comes to soothe thy sorrow and thy fears.
Be still, my soul: thy Jesus can repay
From his own fullness all he takes away.

Be still, my soul: the hour is hast'ning on
When we shall be forever with the Lord -
When disappointment, grief and fear are gone;
Sorrow forgot, love's purest joys restored.
Be still, my soul: when change and tears are past,
All safe and blessed we shall meet at last.

an update

2008-07-08T09:36:00.003-04:00

Sorry that it's been over a week since the last post. Somehow time gets away from us.

Since the stomach surgery, Samuel has not spit up once or had any visible signs of reflux. We are so thankful for this change. We are able to feed him 7-8 times a day, directly into his stomach and we are in the process of transitioning back to all breast milk and off of the hypoallergenic formula. We will have hopefully made the transition fully by this weekend.

Speaking of this coming weekend ... we are planning on taking the two big kids to the beach ... and leaving Samuel here! One of the things we are realizing (though it is hard to admit and not feel guilty for) is that we need breaks. Individually we need breaks and as a family we need times where Samuel isn't always the central demand. We are looking forward to getting 2 days with just AC and Colin. Overall they have done wonderfully with the addition of their little brother. This can only be from God's Spirit at work in them, as there is plenty of opportunity for them to become bitter and angry and express frustration towards him - they never have. Even so, they need us to pay them special attention too, and we are looking forward to having that opportunity this weekend.

Of course, that means that there are several folks here that are stepping up HUGE to keep Samuel while we're gone! It is hard for us to be needy and dependent on other people - easier for this preacher to preach about grace than to receive it. But God is showing us his faithfulness and care for us through the love that his body is showering on us and we are grateful.

Two particular things you could pray for as you remember us these days:

That Samuel would begin to sleep well at night. He tends to wake up several times during the night with coughing, crying and general fussiness. We are usually able to get him back to sleep but at times it is an all out lights on, everybody up working at it kind of thing. Several nights of this in a row and we get pretty weary and that affects our relationship with one another, our attitude generally and our souls, to boot.
Pray that Sara and I would be able to accept our limitations ... our need for breaks and time away. I was reminded by one of our elders yesterday at lunch that we've got to remember we're in a really long race here ... this is no sprint. Maybe something like the Tour de France - 120 miles today and another 110 tomorrow and a time trial the day after next ... etc. Only God is sufficient for such tasks and we must find our rest, refuge, energy, sufficiency in him. So we struggle with being faithful and responsible parents (and spouses for that matter) and being week and imperfect parents (and spouses for that matter). Pray for wisdom here and a constant dependence on Jesus (whatever that looks like).

The fact is, God has promised us trial in this world AND that he is present with us in the midst of it.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior. Do not be afraid, for I am with you.
from Isaiah 43

Pray that we would live like this is true and rest and refuge in him even in the midst of the river and of the flames.

at home and doing well

2008-06-30T09:15:00.005-04:00

We were discharged from the hospital on Saturday and have been trying to relearn our son again. He is, in many ways, a new little boy.

The surgery was very much a success - Samuel hasn't spit up or had any visible reflux since before the surgery on Wednesday. It took him a little while to figure out the new sensations he was having in his tummy but he's doing pretty well. Since he isn't being woken up by reflux, he is tending to sleep better - which is a big plus for all of us. Of course, every night is different, though. Saturday night he slept straight from 8pm to 4am, then was back to sleep after getting some food and pain meds. However, last night, he was up at midnight, 4am and 5am and didn't really get back into a decent sleep until around 8 this morning. So it goes.

But he isn't spitting up any more. Because of that, Anna Catherine asked me this morning if we were going to throw all the burp cloths in the trash - funny girl.

We are also able to give him bolus feeds again instead of him having to be connected to his pump for 20 hours a day. We're currently doing six to seven 4 oz feeds a day and he is handling those well. So all in all we are very pleased with the results of the surgery and are once again adjusting to a new normal. And the adjustment will have to continue as my sister-in-law Lori and her two kids leave today to head home to PA - for which my brother is thankful. They have served us so well these last two weeks and Sara and I are a little curious how we're gonna do without them. Certainly we can trust that God will provide, as he has all along the way.

While the following picture is from before Samuel's most recent surgery, it is the most current (and best) family photo we've got. Thought I'd share it:

As well, Samuel got his first hair cut last night (thank you Lori!). Here is something of a before and after - just for kicks and giggles:

recovering from surgery

2008-06-25T12:50:00.003-04:00

Samuel's Nissen surgery went well this morning and took less time than we were anticipating. The Dr. came out to talk with us after only an hour (9am). After a bit of time in the recovery room we were sent up to the Peds floor (room 5507) - where our pastor (Toby) was waiting for us.

Samuel is doing well, is off Oxygen and is resting peacefully (for the most part). It's just about 1pm now and we aren't expecting him to begin being fed back into his stomach for 24 hours, and then at 1/4 the full feed rate. In addition to performing the Nissen surgery this morning, the Dr also reinstalled the G-tube (ironically the one that had been on back order for months and we wound up having for just a few days before we moved to the G-J tube during our last hospital stay). Since Samuel hasn't been fed into his stomach in about a month we are hoping that his body readjusts well to it.

So far, so good. Will update with any changes, but we are anticipating being in hospital for several days as it will take a while to get him back to feeding and then back up to full feeds.

Thank you for your prayers; we remain increasingly indebted to you for your constant support.

some recent pictures

2008-06-23T17:00:00.004-04:00

Bedtime for AC and Colin has become a little more interesting. So we just stick Samuel in one of the big kids’ chairs while we take care of them. He is cozy and it gives them easier access for lovin’ on him.

Both AC and Colin really do love their brother (granted it can be on their terms & in their time):

Sleeping hard. He has been sleeping normally for 8-10 hours a night, though he is often awake for 30 minutes to an hour every night, normally between 3-5 am. I love his toes.

This is what his G-J tube port looks like, in case you've wondered. We can access his stomach and his small intestine through it. After Wednesday's surgery we will have yet another (it'll be the 4th) kind of port for feeding him. The idea is that after the stomach operation we'll begin feeding directly into his stomach again instead of his small intestine. In this pic you can also see his scar from his heart surgery - which is healing nicely.

Please do pray for surgery Wednesday. It should last about an hour and a half and we are likely to be in the hospital for 3-4 days following the operation. It has been wonderful having my sister-in-law (Lori) and her two kids in town (Emma and Jake). They've taken great care of us. God has taken great care of us and we are grateful.

'long time - no post'

2008-06-17T09:54:00.002-04:00

Please do forgive our absence from blogworld - we've been again rather absorbed in our own little world. Since Samuel's come home, now over 2 weeks ago, we've found the G-J tube to be working. It is successfully keeping him from refluxing (and therefore aspirating) his feeds. However, he has still been refluxing a good bit - now it is just stomach acid. This leaves him in a good bit more discomfort than when it was gastric juices + formula. So, we are having to do a good bit of suctioning every day. (It is strangely funny/sad when your 4 yr old knows words like 'suctioning'.) We have increased the medication that he is on for reflux to the highest allowable dosage and he is still struggling with it and is quite uncomfortable several times a day because of it. He normally has 3-4, maybe 5-6 (depending on the day and who knows what else) episodes of reflux a day. These can last up to 45 minutes or so with him coughing, trying to keep his airway clear, suctioning, coughing, lots of crying and finally getting settled back down. Through it all, however, he is gaining weight and growing.

So, despite the G-J tube, the increased meds, a hypo-allergenic formula, sleeping on an incline, being on a continuous feed 20 hours a day, Samuel is still having significant reflux - which in and of itself would be a huge deal, other than a huge annoyance, save for the fact that we know is also likely aspirating some of that stuff. This really has left us with one option to control his reflux (and thereby hopefully curbing his aspirations) - the Nissen.

The Nissen is a stomach surgery that wraps the upper part of the stomach around the lower part of the esophagus to essentially act as a new (and improved!) esophageal sphincter. It is a permanent procedure. We met with the Pediatric Surgeon yesterday (Dr. Chandler) and we have gotten on his surgery schedule for next Wednesday morning (June 25th). The surgery does require general anesthesia (Samuel's 5th round of it) and should take about an hour and a half. Hopefully, we will be able to go back to feeding Samuel into his stomach, which means we should be able to drop the continuous feed deal and give him regular feeds every 3 hours or so. Not being tethered to his feeding pump will be a welcome change. As well, we should be able to drop the reflux medication over time. The surgeon thinks we will likely be in hospital for 3-4 days post-op, depending on how Samuel recovers.

We also have several other surgeries that need to take place in the next few months. We should be able to get his initial lip repair done within a month of his stomach surgery, if all goes well. Then we will have to figure out when to get done the several urinary surgeries that he requires. And before a year of age we will have his palate repair done.

So, lots going on. Some hard days and nights. But a faithful Father who consistently and constantly provides for us - often and most frequently, through his people.

home again, home again, rig-a-jig-jig

2008-06-01T22:22:00.003-04:00

Well, we were finally able to bring Samuel home from the hospital today after 16 days! The discharge process went very smoothly and a lot faster than we were expecting it to so by 1:30ish we were all back in our own house, together. Anna Catherine and Colin were very excited to see their little brother and have him back home.

However, we have replaced the 'hard' of a hospital stay with the 'hard' of having a challenging newborn with two older siblings who are again having to re-adjust to a new little one around. This afternoon and evening were pretty rough with the two older ones - lots of crying, whining, ugly attitudes and general neediness. So it goes, I guess. But we are hoping that we just all need a little transition time to get back into something of a 'normal routine.' ('Normal' makes me chuckle.)

Thank you for your continued prayers. Please ask our Father to help us all adjust. Daddy hasn't been a real trooper today either. Maybe the older kids are taking their whiny-cues from their daddy. Apparently, though I do not like to admit it, I need Jesus to help me through this just as much as (ok, more than) AC and Colin.

For a relevant and timely word on the hardships of life and the only hope that can help us through, I encourage you to listen to this sermon on Psalm 90, preached this morning by our faithful pastor (it should be posted in the next day or two if not yet).

swing ... and a miss

2008-05-31T22:52:00.003-04:00

While we were hoping to finally have Samuel home with us this evening, it has turned out not to be so. The Drs feel that he might still be needing O2 a little (especially when he's in a deep sleep) so it would be unwise to send him home with us where we aren't currently set up to monitor his saturation levels. So ... we're back in our house this evening and he is sleeping still in room 5614 in the PICU.

Some backstory to fill in the holes since Tuesday. We decided to have the G-J tube placed. That took place on Thursday morning and came off without a hitch. The folks doing it thought general anesthesia would be the way to go, so, despite our dismay at that prospect, we went forward with it anyway and the anesthesiologists said everything went 'perfectly.' They began his feeds back even that day, albeit at 1/4 the full rate. So he started back at a rate 9cc/hr for 8hrs till they say that he was doing well. Then they bumped him up to 18cc/hr for another 8hrs and on and on until we got to the 36cc/hr which was his rate before the G-J tube placement. They decided not to stop there, however, and he is currently at 40cc/hr. Over 20hrs for the day (he gets a 4hr break during the day) he is therefore getting 800cc. That's about 27ish ounces.

So far, he has handled this feeding setup quite well and we have been very pleased to not have any spit up with milk (well, Neocate) in it. However, this hasn't curbed his reflux. He still does that some and will occasionally spit up as well. Now his spit up is just a small amount of gastric juices. So it goes. We are a little concerned that he will now be aspirating acidic gastric juices exclusively, even if at a lower volume. Doesn't really seem like a good thing to have in your lungs, but we'll talk with Drs about that tomorrow.

Since having the G-J tube placed, he certainly seems more comfortable and more like his former self. He had not needed Oxygen much (if at all) and therefore we were hoping that they'd send us home today. Alas, 'twas not to be. So, tomorrow will be his 3rd Sunday in a row in the hospital. Not really how we are wanting to spend our day of rest, but our father knows what is best for us and (in our sane moments) we know he is not holding out on us or on our son.

So, what we are needing to see is that his O2 need continues to decline - frankly he doesn't really have one now, but I think nurses and respiratory therapists that don't know him get antsy and put O2 back on him when he might not actually need it. Hopefully, as his aspirations become less, his lungs will be able to heal more and more and he will be better able to breathe and oxygenate. At this point we are hoping to bring him home tomorrow, but Monday is most likely more likely - if you follow.

We're looking forward to worship in the morning, but more so to when we as a whole family worship together without concern of these medical needs. May Jesus bring that day quickly.

there's no good title, so ...

2008-05-27T13:38:00.004-04:00

Still in the PICU - waiting on getting the G-J tube placed sometime this week.

The G-J tube uses the existing hole in Samuel's stomach from the G-tube, but runs a tube through the stomach and into the small intestine. The idea is that with two sphincters between the food and his esophagus, he is less likely to reflux ... and therefore, less likely to aspirate. If this doesn't curb the issue of chronic micro aspiration (with occasional substantial aspiration) we will then need to go with the Nissen. This is a surgical procedure that wraps the upper part of the stomach around the lower part of the esophagus, essentially using the stomach to tighten the esophageal sphincter, thereby keeping the contents of the stomach down.

The negative side to the G-J tube is that we will be unable to bolus feed. In other words, Samuel will basically be on a continuous feed, all the time. We should be able to give him a four hour a day break, but that is assuming that he will be able to handle 24 hours worth of feeds over a 20 hour period. We don't like this option, truthfully. But we dislike it less than the Nissen. This new tube should get placed in the next day or two as the part has to be ordered.

As Samuel is still requiring Oxygen, it is not clear exactly when we might be going home. We would like to think sometime this week, but alas, 'tis not our wishes that matter in these matters.

well, not what we'd planned

2008-05-23T22:42:00.003-04:00

Thursday night, around 1am, Samuel had another "episode" - to which the Drs and nursing staff responded by putting Samuel back in the Pediatric Intensive Care Unit.

The consensus among the Drs is that Samuel has been having reflux pretty regularly which often leads to aspiration in small (actually micro is the word that is used) amounts. These micro aspiration events are not necessarily something that we would see happen or after which we would be able to observe a noticeable difference in Samuel. However, the chronic micro aspirations can lead to a cumulative negative effect on the lungs (scar tissue and greater trouble handling future aspirations). Occasionally, Samuel will have a significant aspiration (more than normal but still less than a tablespoon of fluid). The PICU attending physician from today believes that this is what has caused Samuel's troubles as of late.

There is a test that can be run to see whether or not Samuel is aspirating his feeds - a milk study. The basic idea is - as I understand it - to dye his feeds and take a picture several hours later and see where the dye ends up. If it is stomach and below - good deal. If the dye ends up in the lungs, there is only one way that it can get there. If the latter is the case (which we would all expect it to be given what we've seen already), then we have to consider some other feeding options to try and cut down his reflux as much as possible and thereby cut down the risk of aspiration.

Trouble is, at present, it will probably be Tuesday before that study can be done - it being Memorial Day Weekend and all. So, the attending from today (who will be back on Monday) is planning on having us hang out in the PICU until then, just so they can keep their eyes on Samuel.

His condition seems to fluctuate so much these days. Yesterday afternoon and evening he really seemed to us like he was returning to his normal self. He even fell asleep around 8:30pm which is about his normal bedtime at home. We were beginning to think about a Saturday(ish) discharge. Then, bam!, we're back in the PICU.

We are so far from ideal right now. The best case scenario is long gone. We are finding it really difficult to think through decisions that need to be made. It probably isn't best that I tend to write these things after 11 o'clock at night. I probably sound worse off than I really am. But one way or the other, I do know this ... we're tired. Tired physically - Sara slept about 3 hrs last night. Tired emotionally - where's the exit to the roller coaster? Tired relationally - it takes so much energy and effort to think through, plan and coordinate our days that we really don't have much energy left to deal with relational issues with one another. We're tired.

I say all that probably for two reasons. 1) it's true and I think I find some kind of benefit from being able to get it out there, but more importantly 2) we need your prayers. We aren't going to make it if it's up to either one of us. Many friends have been sooooo helpful these days. Even dumped our older two off on a family with 4 kids of their own this afternoon with about 20 minutes of lead time. (God bless the Kykers!) We have been so well taken care of we can't conceive of having done any of this on our own. I can't even get my lawn mowed, but when we got back from hospital this evening I saw that my faithful neighbor (Mr. Tim!) had mowed the whole thing for me! Indeed it is true - 'we get by with a little help from our friends.'

It's also true that we get by with a little help from our families. My brother and his wife and two kids are on the road to TR from Pennsylvania even now as I type. They'll be here for the weekend. We are very much looking forward to their being here. We love them. Our kids love them and they all take good care of us.

We are both staying home tonight since Samuel is back in the PICU. One nurse, two patients - so no real need for the parents to be there. Although when I just called to check up on Samuel, the nurse told me that 3 nurses were in his room trying to get him settled down. Fun fun fun. He is a Beachy baby after all - so he's got a little, ahem, shall we say, spunk.

Well ... enough for now. Hopefully we'll be getting this thing figured out soon and you will be able to go back to reading far more important things online. Until then, thank you for reading ... and for praying.

Thursday afternoon

2008-05-22T16:17:00.003-04:00

It's Thursday and we're still in the hospital and still don't really know why.

Well, we know we're there b/c Samuel was having substantial trouble breathing, but what was causing that we aren't exactly sure. We have been able to eliminate the heart from the list of possible 'unsubs' (to reference a favorite TV show). It's functioning correctly and isn't sending too much blood to lungs (which had been one of the theories). That leaves us with two real options, maybe a third. Either he's got a cold, an aspiration pneumonia, or both.

While his chest x-ray is clean and clear, he continues to require O2 and is sounding raspier and junkier in his breathing than normal. The O2 helps as do the albuterol treatments. We are hanging around in the hospital until he doesn't need O2 anymore, and to make sure that he can handle his feeds alright. We are currently at a rate of 30cc/hr for 24 hrs. That still doesn't get us the desired number of calories for his daily intake, but if he handles 30/hr well for a day or so, we will bump him up to 32 or 33. Over 24 hrs, those little bumps are helpful. An ideal would be around 35cc/hr. It's a lot of math. I'm working on a spreadsheet to keep it all straight. See, kids, stay in school and learn your math ... it really does pay off.

So ... please do pray for our endurance - for our whole family. As Sara and I are trying to rotate who's at the hospital, AC and Colin are spending lots of time with babysitters and I think it's beginning to take a toll. Little ones are resilient, but they also like 'normalcy.' Thank you for lifting up all of our little ones. Thank you.

Just got off the phone with Sara. She just spoke with Samuel's Pediatrician and she thinks that if we are able to stay off the O2, we might get to go home on Saturday or Sunday.

help from John Newton

2008-05-20T23:36:00.003-04:00

These are good words ... and come from a man who knew hardship.

Pensive, Doubting, Fearful Heart
Pensive, doubting, fearful heart, hear what Christ the Savior says;
Every word should joy impart, change thy mourning into praise.
Yes, He speaks and speaks to thee, may He help thee to believe;
Then thou presently will see thou has little cause to grieve.

Fear thou not, nor be ashamed; all thy sorrows soon shall end,
I, who heaven and earth have framed, am thy Husband and thy Friend;
I the High and Holy One, Israel’s God, by all adored,
As thy Savior will be known, thy Redeemer and thy Lord.

For a moment I withdrew, and thy heart was filled with pain;
But my mercies I’ll renew; thou shall soon rejoice again;
Though I seem to hide my face, very soon my wrath shall cease;
‘Tis but for a moment’s space, ending in eternal peace.

Though afflicted, tempest tossed, comfortless awhile thou art,
Do not think thou can be lost, thou art graven on my heart;
All thy wastes I will repair; thou shalt be rebuilt anew;
And in thee it shall appear what the God of love can do.
Words: John Newton - Music: Wendell Kimbrough, 2004

Tuesday night - still in hospital

2008-05-20T23:31:00.001-04:00

Samuel has been in the hospital since early Saturday morning. He was having a very difficult time breathing and we decided he needed to have professional eyes on him. At first they said he likely had an aspiration pneumonia (fluid on his lungs from aspirating after reflux) OR a viral bronchialitis (basically a cold). As it turns out, it seems like it was a minor case of both. But put the two together and it was something of 'an event' as the Drs call it. He was never blue or anything like that, just more coughy and agitated and laboring to breathe more than normal.

He has been in the PICU until this afternoon. They have been having him on Oxygen because his breathing was so labored. The main things they've been working on are getting his spitting up stopped - which is very important b/c the more his spits up the more likely he is to get pneumonia again - and getting him to breathe well on his own again. On the first of those two issues, they put him on 24 hr continuous feeds at a rather low volume. He handled that well until today when he began spitting up again (and he hasn't really stopped since 1 oclock this afternoon).Sara and I have a theory as to why this is (concentrated feeds, from 20 calories to 24 calories) but no one with any medical knowledge is thus far agreeing with us. He also has been weaned off the O2 until this evening when he was having trouble breathing again (not surprising giving all the spitting and refluxing he's been doing).

We had been in the PICU but they moved Samuel to the floor today b/c he was doing well enough to not require intensive care. They had been talking about us going home tomorrow (Wednesday), but now with him spitting so much and if we are to make any new adjustments to his feeding tomorrow, it will likely be longer that we remain in hospital.

Please pray that we can get this reflux thing figured out. He's been on 4 different medications - none have controlled it yet. We remain on just one (Zantac, 3x a day). We have gone to a non-dairy formula to see if he is allergic to dairy, but that hasn't seemed to make a huge difference over the last 10 days (maybe b/c one of the meds he'd been on has lactose in it?!), so we're going to continue that for another two weeks since we're now not taking that medication any more. We've gone to a slow 24 hr/day feeding that had been working but now is apparently not. We're getting pretty tired of the spitting and aspirating. We'd like to get something figured out along these lines. Especially since we're sitting in the hospital in the mean time. Please pray for a definitive answer to this issue. That may be more than we can get, but please pray for it. Our perseverance in wearing thin these days.

Thank you for the many ways you support us. We could not make it without you.
grant

back in the hospital

2008-05-17T20:46:00.003-04:00

Last night (Friday) around 10pm Samuel began having some real trouble breathing. His rate was increased and it was obvious that his breathing was labored. At 1:45 this morning Sara brought him in to the ER and he was subsequently admitted after a few tests. It wasn't until around 5am that Samuel finally settled down some and Sara was able to get an hour of sleep before he woke up. We farmed out the older two kids around 9 this morning and both spent the morning and early afternoon up here - now in the PICU. After lunch, I went home, got some work done on a sermon for tomorrow morning and then hung out with AC and Colin once their babysitter got them back from the park. Thank you Browns!, Charlotte! and Erika for having the older two today. Sara and I are back up here now (9pm) for another hour and will likely head home for a full night's sleep (hopefully) then up in the morning to preach (me) and come be with Samuel (Sara).

So ... here's the deal. Apparently Samuel has a cold, well, they're calling it a viral bronchiolitis OR he has aspirated a good amount of stuff and it is causing his difficulty in breathing. At this point, they are going to keep him in at least until Monday. One, there's nothing you can do for the virus - if that's what it is. It's just gotta run its course. They can just treat the symptoms - help him breathe better (he's on O2 and has had several albuterol treatments), but they can't make it go away. Two, it won't be until Monday that the GI Dr would be able to see him. They tried feeding Samuel today and he spit up after it so they stopped that and won't try again until after the GI Dr sees him. That event is making them lean toward his symptoms being caused by aspiration. Depending on what the GI folks say on Monday, we might be here for a while. They might go ahead and place the J-tube ('j' for jejunum - which is part of the small intestine) which would put his feeds directly into his small intestine and bypass the stomach, hopefully helping his spitting.

We weren't really prepared for this back in the hospital business. We sure are glad that good Doctors and Nurses and hospitals exist, we just have gotten so used to life at home that to have him all hooked up again to monitors and O2 and IVs ... just so different from life at 407 Tubbs Mtn Rd ... just so different in so many ways from what we'd want, expect, hope for. But it seems to be the Savior's way to not necessarily give us what we expect or desire. And he sustains us along the way.

Looking forward to sleep ... deo volente.

gaining weight and dropping meds

2008-05-14T23:33:00.002-04:00

Well, I guess the title of the post says most of it.

Saw the Pediatrician today and learned that Samuel is 10 lbs and 13 oz - 12th percentile, up from the 7th a few weeks ago. Good sign given all the spitting that's gone on. Overall that has seemed to decrease some and Samuel is definitely a different baby now that he's off the Reglan. We're glad to have him back.

We are also cutting back on one of the medications slowly - since if you go cold turkey with this drug it can induce seizures and hallucinations (not really what we're looking for). Once that one is gone (in about a week to 10 days) we'll be down to just 3 medications - 2 for reflux and one as a prophylactic antibiotic.

No definite news on the NAM front. We're still talking with folks in Atlanta, trying to discern whether or not 'the best thing' is the necessary thing - if you follow. We met with the ENT and the Audiologist on Monday. The hearing tests weren't terribly conclusive, but what they were able to conclude is that Samuel most likely (they sounded pretty definitive) has profound hearing loss in his left ear. They didn't test the right ear because it had some fluid on it and would therefore have not tested accurately. They want to repeat the test sometime when Samuel is asleep ... and since they don't make house calls, that'll be during some procedure. During which anesthesia event, it is likely, we will have 5 different procedures done (if we can get it all coordinated): ABR, tubes in his ears, lip repair, possible J-tube placement and correction of possible choanal atresia. The less times they have to put him to sleep the better. Also saw the Ophthalmologist yesterday. No real new news there, other than to confirm that Samuel's eyes don't / can't function well and most likely function very little. It is still too early in his development to determine with any kind of accuracy or certainty what exactly he can see - him not being real communicative and all. So it really just comes down to our observing him and trying to discern what he is observing / paying attention to / being interested in.

Since Samuel is gaining weight, we are having to increase his feed amounts. This continues to be tricky as it seems like he's got a small stomach and can't handle significant increases to volume or concentration. So - having learned the hard way with the latter - we're taking it real slow.

That last phrase is about right for all of it these days. Trying to take it real slow and not get too far ahead of ourselves - really not get too far ahead of where the Lord has us. One day at a time ... it is beginning to sound cliche and trite to me, but it continues to be true - and he continues to be faithful to us.

Mother's Day

2008-05-11T23:25:00.007-04:00

Just a quick note of update (it's 11:30pm).

Samuel had his worst night yet on Friday. From 1am to 7am he spit up every 15-20 minutes. This past week we tried a new approach to feeding - formula. Our pediatrician wanted to us see if Samuel might have a dairy allergy. Apparently many kids that have multiple issues also have a dairy allergy - so we're trying to see if that could be contributing to Samuel's spitting up. And since the 4 drugs that he's been on for reflux/spitting up haven't nipped it in the bud, we'll try something else.

At any rate, we made that change on Thursday night of this past week and attempted to increase Samuel's overnight volume by all of 10cc an hour (1/3 oz.) Friday night. After 2 hours at that rate he began spitting up. So, we're not increasing his volume yet and are just going to take things more slowly. We also dropped the Reglan that he was on, since he was obviously (to us) more fussy and still spitting (which it was what it was supposed to stop). The last 24-36 hours have been much better. Samuel has seemed much more himself - for which we're grateful. We'll see how tonight goes.

We've got a busy Dr week coming up. Monday, Tuesday and Wednesday mornings all have appointments scheduled. We'll be seeing the Audiologist (hearing) and the Ophthalmologist (vision) as well as a visit to the Pediatrician (for all three kids - shots!).

We celebrated Colin's 2nd birthday this past week. We're not really sure he 'gets it', but we had fun and he did seem to enjoy his new toys. We were also able to get away on our first date since being in Charleston on Saturday night. It was wonderful for the two of us to get away from feedings and diapers and whining and meds for even 3 hours.

Here are a few pics from this past week. Enjoy and press on.

10 weeks and a few pictures

2008-05-07T21:58:00.008-04:00

Not much new on the Samuel front other than the fact that he's now on another medication for his spitting - Reglan. And he has begun a three week treatment course of hCG.

Overall and so far as I can tell, we're doing fairly well. We continue to be well taken care of - I haven't mowed my yard in weeks (thank you, Tim, Drew and Hugh!), we are having meals brought to our house 3 times a week and friends come over to help / play frequently. Sure, life is harder these days than we would have picked it to have been, but such is life. And our father provides for us, what we need, when we need it.

Below are some pics from the last several weeks. I don't reckon they need much explanation since they're supposed to be worth a thousand words a piece.

yeah, well, this one might need a brief comment - that's 4:40am ...
and wide awake (which is rare for that time of day!)

9 weeks old

2008-04-30T14:58:00.004-04:00

I realize it's been a while since the last post. Several updates:

Sara was able to get away this past weekend for about 48 hours. She left the 4 of us here and headed to Atlanta for a bridal shower. It was good for her to get out of our little 'Samuel Bubble' for a while and be with good friends. The rest of us did rather well back here in TR, with some wonderful help.
We're doing the continuous feed thing at night: 320cc of his 620 for the day he gets slowly over 8 hrs at night. We were hoping that this would enable us to get a bit more sleep (or at least a few bigger chunks of sleep). That hasn't quite worked out just yet. Samuel has been doing a good bit of coughing lately (the last week) and that keeps us up at night. He can sleep through it it seems, but since the coughing gets things moving in an upward motion it is occasionally accompanied by large amounts of spit up. Changing his clothes, his bedding and/or his changing table in the middle of the night isn't really our most fun thing, but we remember hours of pacing with Anna Catherine, trying desperately to get her to sleep ... these nights are a different kind of hard. But overall, Samuel continues to sleep well, even taking long naps during the day.
On Monday we met with the Geneticist - our only Drs appt for the week. The CHARGE diagnosis was confirmed by the genetic testing done (CHD7 test). Apparently (I get lost in the genetics stuff - amino acids, proteins, RNA, DNA), there was a problem on this gene that led to a truncation of a protein that facilitates the growth and development of cells -- I think. I'm sure you can find out more info on the CHD7, but the long and the short of it for us is that it confirms the CHARGE diagnosis.
We are currently trying to work out getting two procedures done together here in Greenville that both require Samuel to be sedated. One is a renal scan, the other is the impression for his NAM. The Drs in Atl were willing to let an Orthodontist here in Greenville (Dr. Brian Hamby) take the impression, but he does not currently have hospital privileges. We are trying to figure out how to get those to him for this procedure. Hopefully in the next few days we'll get those details figured out and be able to move forward with the NAM and the renal scan.
Samuel's next Drs appt is next Monday, when he begins a three week treatment course with a hormone (hCG). They're gonna teach me to give him the injections so that we don't have to make multiple trips a week to the other side of town for them (the Endocrin folks, that is) to do it. They are also going to run a battery of blood tests to look see what they can see I guess.
Samuel actually only has 4 appts in the next month - scheduled right now that is. There will likely be visits from the SC School for the Deaf and Blind, the renal scan / impression procedure, and if this cough doesn't lessen, a trip to pediatrician to figure it out. But as it stands now, we're looking at a few weeks of relative quiet.
AC and Colin seem to be improving generally. They still have their moments (heck, so do I!) but there seem to be less fits than there had been. I guess we're all having to adjust to a new life.

Thank you for your continued prayers and support. We are continuing to be needy. It's not a fun place to be, but it is our lot in this life. And we ask that God would give us the grace needed to receive from his hand all that he places in our path. And not only to do so, but to do with joy. He is a good father. He will provide all that we need, when we need it. Of this we are confident. (Right now, anyway.)

8 wks old and growing

2008-04-23T21:43:00.003-04:00

It was 8 weeks ago today that we began this little adventure. Began in the 'here in the flesh' kind of way. Eight weeks ago today we began to get familiar with the NICU and it's beeps and monitors. Eight weeks ago today ...

It seems almost not possible to have been 2 months. It hasn't been that long! Has it been that long?! Crazy how our perception of time is so - I don't know - off, at times. So much has happened in so little time and I am already having trouble remembering some of the details from those 'early days.' I guess when you spend so much energy trying to make it through today you have little energy left for remembering yesterday. But I reckon we ought not forget yesterday and the battles we had to fight then. I reckon the battles of yesterday, the ones we've fought and survived (though battered and bruised and bloodied a little) are of great benefit to us. They remind us of our weaknesses - keep us dependent on others - we can't do life alone. They remind us of our strengths - who really provides the strength and energies needed? So, while it can be difficult to remember details of 8 weeks ago - heck, even 8 hours ago! - I can't allow myself to forget them, or live as if they never happened. I seem to recall Yahweh God telling his covenant people before they entered the promised land, "Don't forget!" Don't forget the past. Good advice. I figure he knows more than I do, better pay attention.

So, I have found that these emails (now blogs) have been helpful to my remembering. My brain doesn't seem to work real well, but I can still read ... and remember. There was a time when Samuel had 30 needle pricks on his little body. There was a time when he weighed 7 lbs and 12 oz. There was a time when he had jaundice pretty well and got to sun bathe for a few days. There was a time when we were making two trips a day to the hospital to see our son. There was a time we couldn't hold him what for all the chords and tubes and monitors. There was a time when he took a trip in a helicopter. There was a time they cut open his chest and fixed the problems with his then plum-sized heart. There was a time we lived in another city. There was a time when other people were with our son 24-7.

My, how times have changed ... and in so little time.

We had 5 Drs appt in the last two days for Samuel. Urologist, Pediatrician, Endocrinologist, Cardiologist and a chest X-ray. Overall, we've moving forward. He's gaining weight (9 lbs 5 oz) but not proportionate to his age - he's dropping in his percentile of weight. We're upping the volume of food every day. We're dropping one medication over the course of the next week and have cut one in half. He's had a whole battery of blood work ordered to see how things are looking from an endocrin/hormone perspective. His heart looks good. His lungs look good - no pneumonia. He has had something of a cough and his breathing sounds kind of junky - which has us a bit worried but we've been reassured it's upper-airway and not in his lungs. We're trying to figure out why he's been spitting up so much. 'So much' meaning both frequency and volume. He's going to have a renal scan done to test his kidney function. That will help us determine a timeframe for fixing his bladder to kidney reflux issue. Hopefully that procedure - which requires sedation - can be done at the same time the folks in Atlanta take the impression for his NAM. The Urologist was happy to try and work that out for us. We're moving to a continuous feed a night in hopes that we can get more volume in him when he's less likely to spit it back out and in hopes that we can get a little more sleep. He'll be getting over half of his daily volume in only 8 hours. We'll see how it goes.

Well, it's late and there are still several things that need to be done before our heads can hit the pillow. But hopefully they won't have to come up off again for 3-4 hours.

Here's to hoping ... and remembering.

back from Atl

2008-04-19T15:44:00.003-04:00

We (Sara, Samuel and I) made the trip down to and back from Atlanta yesterday while some friends had a 'jammy day', played in a creek, went to the Library, and had lots of other kinds of fun with Anna Catherine and Colin back here in TR. The trip to Children's Hospital of Atlanta at Scottish Rite went well. We had a good visit with the two doctors who will be involved in fixing Samuel's cleft lip & palate. Dr Joseph Williams (Plastic Surgery) and Dr Michael Granger (Craniofacial Orthodontist) both felt like the NAM appliance would be a big help in treating Samuel's clefting pre-operatively. As well, they were very willing to work with us in the frequency of necessary trips to Atl for adjustments.

Where we go from here: In the next week or two we will head back to Atl to get the impression of Samuel's palate. Two weeks after that, they will 'deliver' the NAM to us (install it basically). After that, we will begin to get it adjusted weekly or every other week. The goal of the NAM is to actually bring together the two sides of Samuel's cleft. At this point, I can get the whole tip of my pinky finger in the front of his cleft so it seems like there is a long way to go. However, the Drs have said that in a few weeks with the NAM, it is likely that the gap will be closed. After that point, they will install an additional piece to the NAM that is designed to raise his left nostril over time - helping that repair also. After the delivery of the NAM, it is typically 12 weeks till the lip surgery. So it looks like July/August for Samuel's initial lip repair. At which point the NAM comes out. They will also want to do his palate before 1 year of age. So there are at least two more surgeries before Samuel turns a year of age.

Over all, we're doing fairly well. It can be a little overwhelming every time we get back into the hospital setting. We just get used to doing life here at home and sort of forget that Samuel has a very long road ahead full of more Doctors' offices and 'procedures.' It seems like we should know this by now on this road we've been traveling - that we can only allow ourselves to fight today's battles and not get caught up in all of the possible difficulties of the future. Alas ... one day at a time. One Doctor's appt at a time. One thing at a time. For us, it's an 'easier said than done' proposition. But, so it goes. And so we seek to walk. One day a time.

Thank you for your continued prayers for us. We need them. Pressing on ~ grant

two weeks home

2008-04-13T22:45:00.001-04:00

Well, I really can't believe it (in fact on Friday I actually couldn't remember), but Samuel has been home with us for two weeks now. He'll be 7 weeks old on Wednesday. He's gaining weight and we are adjusting to life with our 3 kids all under one roof. The long and the short of it is that Colin is probably having the hardest time. He's not yet prepared to give up the baby spot and no matter how much time he spends in time out or how often I tell him he's now a big boy, he just doesn't like seeing us hold Samuel. We trust (hope?!) that he'll make the adjustment before too long. You can pray for us all on that front: that Sara and I would be wise and gracious parents for Colin particularly and that he'd adjust well and soon. Anna Catherine continues to love her littlest brother and delights in holding him as much as possible. Samuel is sleeping well (actually continues to sleep through the night!) and also continues to have - as one friend puts it - 'rock star hair.'

On the Doctor front ... we actually had no appts this past week and enjoyed that fact very much. We will make up for it in these next two weeks as we've got 8 at this point. His list of specialists in 7 ... and growing. Biggest issue on the medical front for Samuel is our determining the site and timing of his cleft lip / palate repairs. In a previous update I'd mentioned the NAM appliance (nasal alveolar molding) that the doctors we'd seen in Charleston want to use to help form Samuel's palate pre-operatively. As it turns out this is something of a new treatment and most of the major medical centers are employing it - at least in some cases. We have found that there is actually a closer facility to us that uses the NAM - Emory in Atlanta. They actually do over 400 cleft lip and/or palate repairs a year and have been employing the NAM as a treatment option longer than MUSC has and therefore has more experience with it. We have decided to head down to Atl and consult with their plastic surgeons. That appt is set for this Friday. We will have to see some serious red flags to keep us from going to Atl for all of Samuel's clefting repairs. It's an hour closer. They seem more experienced in this type of thing. Our insurance will cover these doctors. It's also closer, in case I hadn't mentioned that. So, that's the main thing this week is a day trip to Children's Hospital at Scottish Rite just inside the Perimeter of Atlanta. I am assuming that we may come out of that consultation with some good ideas about dates for Samuel's surgeries.

Please do continue to pray for Samuel's health. At times he seems like just any other newborn. Then we are reminded that he's not. He remains at a high risk for pneumonia because of his aspirating. His spitting up is a bit better but he does continue to reflux and since he doesn't swallow real well, that stuff might be ending up in his lungs instead of in his stomach or all the way out. We continue to wait on the 'button' which his G-tube should be converted to. Please pray that that would come in (still on back order - I'm trying really hard not to be really cynical about this) as it's not real easy caring for a newborn with a foot long tube hanging out of his belly.

Overall, things are going well. We're getting by physically on 3-4 two hours naps during the night and the occasional afternoon nap as well. I'm heading back to work this week. We're going to try half-days and see how everyone does. I am very grateful to my elders who have given me these 6+ weeks free from Redeemer responsibilities and for those elders and staff and others who have filled in for me while I've been out. Thank you. And thank you to you who have been so faithful - even if from a distance ... and even if unknown to us! God has taken good care of us and continues to do so ... through his Body.

Pressing on,
grant

5 days home

2008-04-02T12:00:00.002-04:00

Well ... we've been home now for 5 days! Well, 4 days really since we spent yesterday back in Charleston for some follow up stuff (more on that below). After my brother, his wife and two kids left on Monday, we 5 have been on our own and trying to figure this thing out. So much is so weird.

Poor Colin is letting us know that he knows that he is not the baby any more. Though he seems to have grown and matured in the last days/weeks, he's not yet used to being an older brother. When he'd tell Samuel 'bye-bye' today (like before Colin's nap time this afternoon), Sara couldn't help but hear a little 'I'm ready for you to be on your way, now. Bye-bye.' He is very sweet with his little brother, getting Samuel's little blue elephant for him without being asked to do so ... though that means tossing the little blue elephant on his brother's head. Sweetness just looks a little different in (almost) 2 year old boys!

Anna Catherine has done a great job of being the mommy (oops!), I meant, big sister. She can't hold him enough and even stretches so far across the van that it 'hurts her tummy' just to hold in Samuel's pacifier.

So much is so weird. It's weird that we feed our son through a tube. He's got a pretty cushy gig as he gets to sleep all night - even sleeping through his feeds every three hours. It's weird that his hair is almost identical to his sister's when she was a newborn. On her it drove us crazy. On him, it's one of his most endearing features to us. Spikey is in!

So much is so weird. But I guess that's just life. Things change and what was once normal is no longer. No point in longing for the old 'normal' anymore. It doesn't exist. You've got to adjust and seek to be faithful in the present, whatever that present looks like.

Enough with the philosophical stuff (sorry, that's what sometimes happens after 11pm) ...

We did have a few Drs appts yesterday in Charleston. Samuel failed another swallow study. He aspirates liquid into his lungs. Because of his clefting and difficulty in swallowing rightly, he is at an increased risk for pneumonia. Please pray against that.

We then met with the plastic surgeon (Dr Kline) who is a part of MUSC's Cranio-Facial Clinic. It is a little funny when the guy who is the cleft lip/palate specialist takes a look inside your son's mouth and calls his residents over to have a look-see because it's so ... 'interesting.' I'm still waiting on the journal article about our son - so many doctors have found him ... 'interesting.' The plastic surgeon suggested that we visit with a Dr Davis who does something of an appliance for cleft palate babies to help prepare them for surgery. It's called a NAM (I think that means, nasal-alvealar-molding). Basically it functions like braces or a retainer that move things around in the mouth - the idea being that over a period of several months (3-4) the two sides of the palate cleft get moved closer together - simplifying surgery. This appliance would have to be adjusted regularly in Charleston ... every week. We are currently in email conversation with the Doctors to see whether or not we can fudge that every week thing as that's a little daunting to us at present. It didn't sound like Samuel's cleft repair was dependent upon this

NAM

thing, so we'll just have to see what the Drs think.

We then met with the ENT who did Samuel's throat surgery 12 days ago (to remove the irritated tissue caused by the intubation). While she wasn't able to get the scope back down there to check how things were coming along (Samuel wasn't, ah-hem, shall we say, cooperating) she was able to get a better feel for some of his clefting. As well, she wrote us a prescription (now #7) for Samuel that should help with his spitting up. Given the fact that he has trouble clearing his airway (either by swallowing or coughing) the less junk in his throat the better.

Sara took Samuel to the pediatrician this morning and things seemed to check out well. He has gained a little weight - is up to 8 lbs and 7 oz (ish). Ounce by ounce.

We're getting what sleep we can and trying to keep our heads above water as we figure this new life out. On our good days we are confident that God gives us what we need and when we need it. Both hard things and easy things are given to us from his good fatherly hand. We believe that ... on our good days. Pray for more of those. Thank God for us that we depend not on our faithfulness but on his.

Continuing to need his 'strength for today' (even at midnight),
grant and sara

Home

2008-03-29T16:30:00.000-04:00

After 30 days in the hospital, Samuel came home with us yesterday!

He's not hooked up to anything - no monitors, no oxygen, no IVs. Other than eating thru a tube in his belly, he seems like a regular kid. It's kinda weird for us to have him home after so long in the hospital. We have just spent our first straight 24 hours with him in a month - not the normal intro into life with a newborn, but little with this newborn has been 'normal.' For example, he's on 5 medications right now. All of which we 'draw up' with syringes and dispense through his G-tube. It's just kinda weird. So, weird or not ... we're home. Finally back on Tubbs Mtn Rd in TR. While the flowers and trees are a little further along in Charleston than here in the Upstate, it's so good to be home. (In typing that sentence, I initially typed 'so god to be home'. Appropriate mistake I guess.)

Just so you know, we haven't decided about what to do with public places just yet. We were planning on going to worship tomorrow morning but we were told to avoid public places for 2 weeks post-discharge - just to be safe. He has had open-heart surgery after all so I guess it's not unrealistic to ask. We just miss our church family. We have been so well loved by Redeemer (and a whole lot of other people too) and we miss y'all so much. So if you don't see us tomorrow morning in worship or we sneak out early, please know that we would love to hang around and hug each of you and thank you all, but it may be best for our son to not have lots of loving (though germ-carrying) admirers just yet.

Anna Catherine and Colin are on their way back down to us from PA as I type. My brother, his wife and two kids are bringing them down and will be here with us for a few days. So, if the Lord is willing, tonight we will finally have all five of us in the house at the same time. What a long strange trip it's been ... and will continue to be, no doubt.

Thank you for your ongoing love and support. We could not, can not do this alone.
grant

ps - Just so you can know that it's real, I've attached a pic of Samuel sleeping in his very own bed in our house! (and another one that I couldn't resist.)

recent highlights

2008-03-25T23:20:00.002-04:00

After a pretty rough day yesterday (OT, PT, Speech Therapy, rounding Drs, feedings, an ECO) Samuel had a much more restful (sleepy, really) day today. It was in fact a pretty great day.

He really did sleep almost the whole time we were with him today (about 12 hours). When he would get worked up (when changing a diaper or something) he was fairly easy to calm back down. Yesterday he required a bit of O2 because when he finally did get to fall asleep his O2 saturation levels were too low. He lost the O2 support last night and did pretty well all day today without any extra oxygen. That is a good thing. We'd really like to not take him home on O2.

Some other highlights from the day:

· he slept

· he had a 'swallow study' today to determine whether or not we could attempt bottle feeding him. He failed. He's not real good at swallowing. And when he does swallow, a decent amount goes down the wrong tube. If he gets too much liquid down in his lungs, that can lead to pneumonia, which is a really bad thing for newborns (it's actually life-threatening). So, we're holding off on any further attempts at any oral feedings. We're not sure what we're going to do about this at this point. The Speech Pathologist called in a 'retired' expert to get her opinion and she too was a little stumped with where we go from here other than through the G-tube.

· he slept

· they have further compressed his feeds. He is now getting his full feed of 70cc over a 45 minute period. It had been over a 3 hr period a day or two ago so we're progressing nicely. The goal is to get him to tolerate that volume in 30 minutes. Hopefully we'll be there tomorrow.

· he slept some more.

· Today, for the first time in his life, Samuel went outside! They actually let us take him off of his monitors and out of the hospital, if you can believe (see the attached pics for proof). Granted we were granted a 30 minute leave, but we loved every bit of it.

· he, as you might guess, then slept

· He got rid of his IV today. Not b/c they took it out but b/c it got clogged or something. It's basically unusable, so they will likely remove it tomorrow.

· In talking with his doctors this morning, we have made the tentative plan for discharge on Friday. We will be coming back to Charleston on Tuesday to consult with the Cranio-Facial clinic people here about his cleft lip and palate. We just like Charleston so much, it's hard to stay away. The shrimp and grits are to die for.

· Between now and Friday we will be learning how to use his feeding pump; how to do PT with him; give him his medications and who knows what else as we prepare to bring him home.

We are very excited about this prospect and hope to have a few days in our own house getting situated with Samuel and his care before the older two return from PA & MD and the zoo opens up in our house. As well, we're a little apprehensive about having Samuel on our own, like a normal newborn. There has been so little about this experience that has felt (or been) 'normal' that we're not really sure what anything should look like. Paradigms that we had with our other two kids we just haven't been thinking in those terms with Samuel ... where ICU, monitors and hand-sanitizer have been the norm. So pray that God will give us the grace, mercy and wisdom to find our way in this new normal.

As well, before I sign off for the night, I'd ask that you pray for a little girl named Ellie. She is the newly adopted daughter of some fellow Greenvillians (Greg & Denise Horrocks) who was scheduled to have her 2nd (I think) operation tomorrow (Wednesday) on her spine. However, her parents got news today that she has a Staph infection and surgery has been postponed a week until she can get a full round of heavy antibiotics. The Horrocks have already been here 20 days and with 5 other children at home they've got a difficult road. Please pray that Ellie's infection would clear up quickly and not turn into anything worse, that they might all get home and be a family finally.

Thank you for your confidence before the throne on their and our behalf.
grant

Out of ICU!

2008-03-23T17:50:00.001-04:00

Friends,
For the first time in his 3 1/2 weeks Samuel is out of an intensive care unit!

They moved him today up to the regular cardiac kids floor - 7C (room #781). They removed most of his lines and have taken out the chest tube, pacing wires and urinary catheter. He's still on a little O2 (at least he was earlier today) but should be off of that soon. He's up to full feeds again and the doctors said he had no need for intensive care. He'll still be closely monitored, but we will be much more free to hold him and will be directly involved in his care now. 7C is in many ways a transitional step between ICU and home. He's in his own room and we'll have the option to spend the night with him if we want to. If all goes well, we might be looking at being discharged to home this week.

We're on our way back up to hospital after being 25 minutes late to worship this morning (we were able to hold him and didn't want to put him down), and having a great lunch with old friends. Our older two traveled well to MD yesterday and are enjoying their time with their cousins. Thank you for your continued faithfulness in prayer for us. We are quit excited to have Samuel out of the PCICU, but also a little apprehensive about being more 'in charge' of his care as we've only know him with lots of doctors and nurses around.

Grateful for & dependent on your prayers and many expressions of support and love,
grant

Post-Op, Day 2

2008-03-21T23:30:00.001-04:00

Just a quick note to let you know how Samuel's 2nd day after surgery went.

Overall he is doing well and is looking much better now that he has less tubes, etc. He spent most of the day breathing room air and with nothing attached to or coming out of his face - it's really sweet to be able to kiss all over his face and head unobstructed.

This afternoon, the ENT came to check in on him. There is apparently something that happens frequently with kids that have been on the ventilator for a while. There gets to be some irritated tissue in the esophagus, especially around the vocal chords. This tissue, if not removed, can turn into scar tissue which would potentially obstruct the airway, which our little guy certainly does not need. Samuel had been showing some signs of difficulty in breathing throughout the day, even though his respiratory rate is excellent, as is his O2 saturation. The ENT did find some of this tissue in Samuel's throat and decided that it needed to be addressed as soon as possible.

"Addressing it" meant another trip to the OR - if you can believe it - to be fully sedated and, irony of ironies, re-intubated so that the Dr could remove those bits of tissue. That was done this evening around 9pm and the Dr (Lucinda Halstead) was able to remove the necrotic tissue and coat the affected areas in some medicine that will keep scar tissue from forming. She said everything went great and we even got to see some pictures of the inside of Samuel's esophagus.

So, as of 10:45 tonight, he was back in the PCICU, resting peacefully (i.e., well-medicated) and stable. Hopefully the breathing tube will come out tomorrow morning and we shouldn't have to worry with this issue again.

Our parents are heading out tomorrow (Saturday) - Sara's with AC and Colin to MD. Pray for their safety in travel, especially for patience and sanity for Jim & Ann. Pray that Sara and I would adjust to being 'just a couple' and that of just one kid. Things will certainly look different in the coming days with fewer people around and less moving parts. We are so grateful for all the ways that you have provided for us. We have had to convert an upstairs hall closet in the apartment we're staying in to a pantry to store all of the fruit snacks, granola bars and paper products! Our cupboards are overflowing! Thank you for your generosity. I wish I could say or do more to express our gratitude.

Good night,
grant

Post-Op, Day 1

2008-03-20T23:40:00.001-04:00

Post-Op, Day 1 (as they call it here in the PCICU) went very well for Samuel today. They actually removed his breathing tube this morning (sooner than we were expecting - though they wouldn't let me do it) and he has been breathing on his own for the majority of the day. He does require a little O2 every now and again but his saturation remains high and his breathing rate is already half of what it was before we came down here a week ago - a good sign that fixing the heart was a necessary (and at this point successful) step.

So, with his breathing tube out & the IV they had in his neck out he looks fairly normal ... well, when the rest of him is covered with a blanket, that is. It is wonderful for us to be able to see his whole face again. The nurse this evening said she was going to give him a bath tonight and remove the cranial saturation monitor lead on his forehead, so hopefully tomorrow he'll have nothing stick to him or in him from the neck up. They've also told us that tomorrow (Fri) he is slated to have several other lines removed and he might have his chest tube removed in the next 24ish hours. The fewer the lines the better. We still can't hold him, but we are very much looking forward to the day that we can.

As Samuel continues to breath well and now that they have begun feeding him again (up to the same amount as Pre-Op) and he is tolerating that well, the next hurdles are to continue removing lines & getting him out of the PCICU and onto 7-C - which is just a regular kids floor in the Childrens' Hospital. From 7-C we hope to be discharged ... and then HOME!

There still is no real timeframe on that. It is really up to Samuel and how he recovers and takes to feeding and breathing. Hopefully his little heart (the size of a plum) will heal from its surgery and cause us no more concerns.

Sara's dad got in town today from the Washington DC area (via Amtrak nonetheless). It has been invaluable to us to have family take such good care of us these 3+ weeks now. My parents have made 2 trips from PA, Sara's mom has been here for 3 weeks and both of our brothers families are planning on taking Anna Catherine and Colin for several days each this next week. (You can pray for them & thank God for them!)

And thank you for rejoicing with us that yesterday is yesterday and is now over. We still are requiring new strength and new mercies for each new day - especially as things can change very quickly in a place like this, so please continue to pray for God's provision. And thank him that he has provided abundantly for us in many many ways!

heading to bed,
grant

Surgery Done & Successful!

2008-03-19T23:30:00.002-04:00

Samuel's heart surgery is complete! Dr. Bradley repaired the arch and patched (literally) the two holes. Samuel is back in the PCICU, is stable and coming off the sedative from the operation. They have already begun to wean him from the ventilator. We are really looking forward to getting that tube out - as is Samuel! We were so thankful to be able to get in and see him around 10pm tonight after a long day of waiting.

Thank you for your prayers today! With your prayers, our parents, an old college friend watching AC & Colin, and dear friends here with us, this day was not nearly as nerve-racking and stressful as it could have been (or as we'd worried it might be). God has sustained us through this day, I am convinced, in no small part due to your faithfulness in praying for us.

Over the coming days, we will hopefully be getting off most of the lines that Samuel has coming out of his body - a chest tube to drain fluid from around his heart, an arterial line that measures blood pressure from inside an artery, numerous IVs for the various meds he needs, a G-tube that is unfortunately empty at present, a PICC line that ends in his superior vena cava, a cranial O2 saturation monitor on his forehead, little wires that have one end exposed and the other end internal next to his heart to pace his heart 'if need be', leads stuck on his chest to monitor his heart rate and breathing, a internal temperature probe, a urinary catheter ... I think that's it. It really is amazing and overwhelming to see it all. But he is stable and it was good to kiss his little head and stroke his little feet - those were about the only places that weren't covered in tubes, wires, dressings, etc.

We are glad this day is over. Thank you for walking with us down this road.
grant

PS - we enjoyed a little time with our older two this morning before heading up to the hospital for the day. Nothing like a little sugar to get them prepped for the grandparents!

Surgery's On for Tomorrow - Wed.

2008-03-18T21:00:00.001-04:00

Friends & Family,
We met with the surgeon today. He's seen all the ECOs and the CT scan from earlier today. He said there isn't anything else to do or see that would be any more definitive until they open Samuel's chest. Samuel's aortic arch is in the gray area of maybe / maybe not needing to be operated on. He'll make the call once he's in Samuel's chest - which is now slated to take place tomorrow (Wed) afternoon, around 1pm.

The plan is to certainly fix the VSD and ASD and possibly fix the arch if the surgeon feels like it needs fixing.

Please pray for Samuel to come through the operation well. It'll probably take 4-6 hours. He'll be on the heart-lung machine. Pray for Dr. Scott Bradley who is by all accounts an excellent surgeon. Pray that he would make good decisions and that he'd fix Samuel's heart. Pray that this surgery would alleviate the breathing troubles Samuel has had (too much fluid in the lungs b/c of the heart pumping too much blood there b/c of the VSD). Pray that I and Sara would have the physical, emotional, spiritual energy for tomorrow and the days of recovery. Pray for Anna Catherine and Colin. We are beginning to see signs of this wearing on them.

So, we've talked with the surgeon, we've signed the consent and we're ready to get this surgical show on the road.

Thank you for your faithfulness. Your love, prayers and support have enabled us to endure thus far.
grant

no surgery today

2008-03-17T07:45:00.000-04:00

Friends,
We met with the surgeon at 7 this morning. He told us that from the images he's seen (all the ECOs we've had done over the last weeks), he doesn't have a clear sense of what is actually going on with Samuel's aortic arch - and he doesn't want to go into open heart surgery without that. Therefore, he has ordered a CT scan to be done today that will hopefully give him better images, enough to make a good plan. At any rate, no surgery today and at the earliest tomorrow, but more likely Wednesday.

Thank you for your continued perseverance in prayer for us. So much of Samuel has been 'grey area' that it isn't really a surprise that this is where we find ourselves today.

One day at a time,
grant

Surgery Scheduled for Tomorrow

2008-03-16T15:45:00.001-04:00

Friends,
Just a quick note to let you know that Samuel is slated to have his open heart surgery tomorrow. The plan is for us to meet with his surgeon (Dr. Scot Bradley) at 7am to go over the surgery in detail. At this point, Samuel is to be the 2nd surgery of the day - which probably means beginning in early afternoon. Our cardiologist in Greenville told us that we can probably expect a 4-6 hour operation. Since we haven't yet talked with the actual surgeon, we don't know many specifics and things can change from the plan at any point. So, that's what we know at this point - surgery scheduled for tomorrow, 2nd slot.

We'll try to update throughout the day tomorrow. Thank you for all you're doing to help us in the midst of all this.

grant

In Charleston

2008-03-14T23:30:00.001-04:00

Friends and Family,
Well, this road - which we never would have imagined walking down - has lead us to Charleston and the Medical University of South Carolina. Since we've been going since 6:15 this morning, this update's gonna be shortish so we can get some sleep. (Now that I've written it, I realize this previous statement was ... ah ... less than accurate. Please forgive).

We don't know exactly what happened this morning, but at some point early in the morning there was an obvious change in Samuel. His skin color was described as 'mottled', his blood gases were off (acidic I think), he was obviously in some kind of distress with great difficulty in breathing. A chest X-ray revealed that his heart was enlarged (more than it has been, I believe) and there was fluid on his lungs. At first they were concerned about his breathing, so they put him on the ventilator which breathes for him. Then they sedated him so that he wouldn't fight against that new tube. They were also concerned about pneumonia, which has been more or less ruled out at this point. As has been a more general infection in his body. When we got there a little after 7 the nurse was working on putting in a PICC line (basically a serious IV whose end is up in the superior vena cava), and adding two other peripheral IVs, just so they would be in in case they were needed. So when we saw him he had more tubes and wires and stuff on and coming out of him than he had to date. It really is tough to see your 2 week old like that. But he was stable - though medically paralyzed.

Around 11:30am, Samuel was taken via helicopter down here to MUSC. He did well in flight and has been stabilized since then. They've done two heart ECOs since he arrived here around 1pm. While we still aren't exactly certain what precipitated this morning's turn of events, we are here and are tentatively on the surgery schedule for Monday. We have heard from Samuel's Doctor this evening some different things than we have been hearing over the past few weeks. The 'pinch' in his aorta she seems to think isn't the biggest issue for him right now, but the hole in between the lower chambers of his heart (the VSD). That was her take having just done the ECO and not having yet looked at all the numbers. It will be interesting to hear what other Drs think after he's been here a little while longer. There haven't been any real revelations about Samuel's condition and he was resting well when we left him 30 minutes ago. He is still on the ventilator and most likely will be until after surgery. There are so many unknowns with Samuel that his Dr tonight even told us to take everything they tell us concerning Samuel with a grain of salt - he's rather unpredictable.

Sara and I arrived here about 6:30 this evening and are adjusting to a new system and a new city. We've got an apartment to stay in (THANK YOU Kapp family!) and have had several other offers to boot. We're about 5 minutes from the hospital which is a drastic improvement from the 25 minute commute from TR to Memorial. At any rate, my parents are on their way into town and Sara's mother is going to bring Anna Catherine and Colin over on Sunday.

Thank you for your many expressions of love and support. We couldn't be doing this without your prayers and helps. We are weary and a little fearful that we are still in the first few miles of this marathon.

Good night and we'll let you know definitives on surgery, etc. when (and if) we have them.
grant.

Diagnosis

2008-03-10T22:45:00.000-04:00

Dearest Friends and Family,

It has been a few days since last we sent out an update, and - though it was the weekend - much has happened.

A few quick notes before we come to the heart of it ...

· Samuel has been moved to another, quieter ‘bay’ in the NICU. He had been in sort of the center of the room and now we are off in a bit of a corner with some curtains for privacy if we want it - we’ve even got a window.

· We met another couple today whose son was not expected to live but a few minutes after delivery. His name is Cohan McGowen (I’m not sure the spelling, it’s pronounced “Co-en”.). His father is also in ministry here in Greenville @ Grace Church - Chris is his name. We are sharing our ‘bay’ with Chris, Emily and their son. He is now on day 5.

· Samuel is altogether off the IV (I can’t remember when this happened, so I may have already mentioned it.) It’s really a joy to have him be tethered to one less thing. On Sunday afternoon the nurse even unplugged him from the remaining two monitors and we were able to hold him free fully untethered. That helped things feel a little more ‘normal’ for a few hours.

· He’s up to full 70ml feeding now and tolerating them well, save for some spitting up today (but we think that has more to do with the method of feeding than with Samuel - we’ll get that figured out at home when we don’t have to answer to nurses).

· Samuel had another heart ECO this morning. It revealed that there wasn’t enough change one way or the other to warrant any definitive action, other than to keep watching him and his aortic arch and see what it does. There is a bit of a thinning of the arch that is? may be? hindering the flow of blood to his lower body. Samuel is to have an X-ray tomorrow, continuing having his blood gas, blood pressures and pulses checked and get another heart ECO on Wednesday. If that ECO is worse, then we may be looking at a trip (of several weeks) to Charleston for surgery. If it isn’t worse, we may be getting discharged the end of this week. Guess which we’re hoping for. Guess what you can pray for.

· We are thankful to have a fellow Redeemerite (Dr. Kristy Carter) as our resident for the coming weeks. It is a great comfort to have people around us whose perspective (medical and personal) is built on the same foundation as our own (on our good days, any way).

Now for the heart of it ... Saturday, Sara and her mom were up at the hospital with Samuel when our geneticist called and wanted me to come up b/c he had a diagnosis for us. Long story short, after several other things came back negative, the geneticist is almost certain (we’ve a blood test in the works) that Samuel’s issues fit into something called “C.H.A.R.G.E. Syndrome” or “C.H.A.R.G.E. Association.” Association may be the better word b/c there are several major and several minor characteristics within which there is a fairly broad range of presentations. As we have read over the literature we’ve been directed to by our doctor we see that Samuel fits.

Before you open a new tab in your browser and google “CHARGE” ... let me describe it a bit to save you some work:

C = coloboma (the missing tissue in the eyes)
H = heart defect(s)
A = ‘atresia’ - has something to do with the nose and throat
R = retardation of growth
G = genital / urinary abnormalities
E = ear anomalies

This is how it got it’s name. Now it is divided into major and minor features, of which Samuel has four of the former and 2-3 of the latter. CHARGE effects approximately 1 in 10,000 births. Our geneticist has begun to prepare us well for what this might look like over time. Some things of note at this point: there isn’t anything that’s life-threatening, as long as the medical issues (holes in the heart, for example) are fixed; individuals with CHARGE are expected to live a normal life-span; many experience some level of deafness and blindness. This latter bit has been a really hard pill to swallow for me and Sara. Samuel will have his hearing screening sometime this week. Please pray that his hearing would not be largely affected.

We have been directed by our doctors to several good resources and we have delayed mentioning this diagnosis broadly until we have had a chance to process some of this on our own. At this point, that is how it would be most helpful for us to proceed. At some later point, we might ask for assistance in researching CHARGE, etc but at this point we are not looking to become experts on CHARGE, we just want to become experts on Samuel.

Grateful for your understanding, generosity, prayerfulness, faithfulness and love & trusting Jesus for new mercies for tomorrow,
grant & sara

Friday

2008-03-07T17:00:00.000-05:00

Friends & Family,
God is good to us. He doesn’t give us more than we can handle (with his - at times - unseen or unfelt support). Even in the midst of some of the difficulties we’ve experienced these last two days, he has been good to give us some good hearty laughs as well: Samuel rolling his eyes at the Occupational Therapist as she tried to bottle feed him - ‘come on woman, give me a break!’; Sara and I having to dress up in yellow surgical gowns and blue hats for the trip down to the OR yesterday; funny personalities exposed. Things go from intense to silly pretty quickly. Laughter is good for the soul and God is helping to relieve some of the stress and pressures of this life we are now living by giving us some things to laugh at.

Samuel’s surgery went very well yesterday. The OR nurse told us he did great during the surgery, his heart sustaining it quite well. While Sara and I were expecting one kind of G-Tube and he actually got another (b/c the one we were expecting is on back-order) he is beginning to eat through the G-Tube and the NG tube is no longer up his nose. We are very glad to get rid of another tube and look forward to his G-Tube being the low-profile button we were anticipating. All things in their time, I reckon.

After not eating for about 36 hours because of Pre-Op prep and Post-Op recovery (IV fluids don’t count as eating), Samuel finally got about 1/4 dose of his full feed today at 1pm through the G-Tube. The plan is to build him back up to ‘full’ feeding over the next few days (or faster if he tolerates them well).

The Cardiologist was up again today (he looked at Samuel every day this week) to read another Eco. They are particularly interested to see how his aortic arch is responding over time. In one spot it is a little small and will, unless it changes on its own, require surgery to correct - hopefully at around 6 months when the VSD and ASD are fixed (3 birds with one stone, as it were). Depending on how it does, however, it might require a separate surgery to repair - and sooner. These heart surgeries (or this heart surgery if we can just have one) will be done down in Charleston and might require a stay of 4 weeks.

On the diagnosis of all this ... nothing really. Three of the four genetic tests that have been ordered have all come back negative (or normal). So, Samuel does not have VCF (Velocardiofacial Syndrome or DiGeorge Syndrome) - the q11 gene on the 22nd chromosome is in tact. He does not have a mosaic Trisomy 13 - the high resolution chromosome scan confirmed the amniocentesis that his chromosomes are normal. There was another genetic test done on a particular part of the chromosomes’ “tails” that revealed nothing irregular. While these results are in some way ‘good’ news, we still don’t know what it is that is causing all these ‘interesting’ abnormalities in our son. At some point, a specific diagnosis would help us ‘get on with it’ (so to speak) as far as expectations for the future are concerned. One way or the other, and for whatever purpose, God has not revealed to us these specifics. There is yet one genetic test they are running to test for another known condition, but this too may not reveal anything. It would seem that we are being pushed into a corner to live by faith and not by medical or genetic knowledge. We must take every day as a new day, full of new compassions and mercies from God and trusting him to provide what we need for that specific day. This is what we must do ... it is not necessarily what we are doing. It is for this that you can pray ... one day at a time, relying on his compassions and mercies for that day.

Thanking God for laughter, good doctors and nurses & the Body of Christ,
grant

Wednesday Night

2008-03-05T23:30:00.001-05:00

All,
The last 24-36 hours have been rather encouraging for us - not that there has been a bunch of ‘good’ news, but there hasn’t been much hard news - and none today! We really praise God for that. We were kind of burning out on the difficult-conversations-with-specialists thing.

So, here’s a brief sketch of where we are. Samuel is at, and has been for almost 24 hrs now, his full feeding of 68ml every three hours. As well, he took 18ml thru a bottle this afternoon! We were so excited to see his little jaw moving as he tried to (and did!) suck. It may have been the Occupational Therapist, the new nipple she tried on his bottle, Samuel growing up and getting more used to the idea OR all of the above. But whatever the reason, we were really excited that he seemed to be getting it. Now there is a real long way to go before he’s anyway near being bottle fed. Those 18ml took probably 20-25 minutes with frequent breaks for swallowing and catching our breath. At that rate, a full feed of 68ml would take over an hour - if he could muster up the stamina. And then to have to do it in another 2 hours and 7 more times that day. Poor guy has got a lot working against him.

To better facilitate his feeding (and therefore growing - which is very important as heart surgery is almost inevitably in his near future) we are having a G-Tube placed in his stomach tomorrow. This is also called a PEG (which stands for words that mean, I think, thru the skin (P), with a light (E) and into the stomach (G)). With this in place, he’ll be done with the NG tube running through his nose and we may be able to get him home sooner than if we tried getting him to be fully bottle fed. They do call this surgery - for it is. They have to take him to the OR, put him under anesthesia, cut a hole in his stomach and place this tube-jobby and then bring him back out of anesthesia. We’re not all that excited about our 8 day old son having to undergo surgery (especially since he has many more in his future). But maybe it’s a good thing we are starting with something rather ‘minor.’

So, that is scheduled for 12:30 tomorrow (Thursday).

Today, during the day and then again this evening, we have been able to just hold our son a good bit. He’s out from under his tanning light, so we are more free to handle him. He also is off of the IV, so with one less chord to worry with it’s hard not to snatch him up and snuggle him as much as we can. But, alas, we must say goodbye to him every day (sometimes several times). The photo attached is from this afternoon ... thought we’d get him good and cozied up before we left. When we got back 3 hours later after dinner at home and some play time with our other two children, he was in exactly the same position. It’s a good sign when he hasn’t been moved much.

Thank you for your ongoing prayers and support and encouragement. Please do pray that his surgery would go well tomorrow; that it would be event-free and that it would facilitate his growth and speed his coming home with us.

I remain indebted to you all,
grant

Tuesday Afternoon

2008-03-04T17:00:00.003-05:00

Friends,

Your prayers are more appreciated than I can express. Your emails back are, while hard to read at times, encouraging and challenging. Thank you for expressing Jesus’ love to us in the midst of this.

After yesterday morning (what with my tears and all), it basically got worse. No worries, Samuel is fine (for Samuel). But he just had a rough afternoon and we got more hard news.

The rough afternoon started with us trying to bottle feed him. While he did get in 2ml through the bottle, it totally wore him out and he wasn’t able to handle both breathing & sucking and swallowing - since in order to do the latter you’ve got to stop the former. So we didn’t push that envelope too much and didn’t even try today. He is improving in his ability to handle greater volumes of food, however, through the NG tube. When I left this afternoon, he was up to 55ml a feeding. The 45ml ideal that I had mentioned previously, was, as it turns out, the low end of the ideal amount. The ‘real’ ideal is 68ml (something like 150 cal / kilo / day). So, on the current plan he should hit that target by 1am Wed morning. But yesterday afternoon was a bit rough for him and after we tried the bottle feeding we weren’t allowed to hold him for rest of the day. He also continued to have some trouble keeping his Oxygen saturation level up - that’s the percentage of cells that have Oxygen attached to them, as I understand it. The higher the better, even up to 100%. Anything under 85% and he starts beeping and if it is sustained (as it was yesterday afternoon), nurses and doctors start paying attention and getting nervous. Not what you want in the NICU; the less attention on your kid the better. At any rate, he was able to get it figured out after a little while, but it only added to the ‘weight’ of the afternoon.

The news we got that was difficult to hear came from the Pediatric Ophthalmologist. He confirmed the suspicions that the collaboma that Samuel has (the misshapen pupils) do involve not only the pupils, but also the retinas and the optic nerves. Collaboma basically means something like “missing tissue.” So his pupils basically look like ovals and the retinas and optic nerves didn’t fully come together and fuse. Bottom line, he will never see well and is rather likely to be closer to the blind side of the spectrum. There is no repair for this issue.

While we do not have a diagnosis (we’re awaiting the results of several blood tests that might narrow down the possibilities) and therefore no prognosis, we are beginning to interact with the likely reality that Samuel will have significant special needs throughout his life. We are yet, I believe, to have a Dr come to us and say, “Actually, things are better than we thought.” It has only been that more items get added to the list. That’s exhausting.

This morning, however, we were able to hold Samuel for about 3 hours. That is such sweet time. I think we might need it more than he does. Pray for more of that. Pray that he would continue to handle his feedings well - especially since they stopped his IV last night (a good thing). The more tubes we are able to disconnect him from the more steps we take toward getting him home. There are several significant hurdles that need to be gotten over before that is a possibility and it isn’t likely to happen for a few weeks at any rate. But we do rejoice in small things and are thankful for them.

God has been good to us in all this. He’s expressed his love through many means: song lyrics, John Bunyan, corporate worship, his Word, and especially through you and your kindnesses to us. Thank you. I attached a few pictures from the last 24ish hours. Thank you. grant

Monday Morning - day 6

2008-03-03T10:00:00.000-05:00

Friends,
I’ve been sitting in one of my favorite places this morning reading your emails back to us. I normally come to Leopard Forest Coffee Company to study, read, meet with someone all over a good cup of coffee and a scone. This morning I’m here with the normal cup of coffee and the scone but with one new addition ... tears. For someone who said in college that he didn’t have emotions, this whole Samuel thing has been ... well, I can’t find just one word to describe it - overwhelming, stressful, tense, intense, roller-coaster, humbling, hard, sad, frustrating, angering ... The thing that is tripping me up this morning is you ... your love, your faithfulness, your kindness, your prayers, your hearts for us and our son. And really what is behind all of those things ... God himself loving us through you. Maybe the caffeine just hasn’t kicked in yet, but it is all quite overwhelming to me at present.

There isn’t much of a Samuel update this morning, partially because we haven’t seen him yet today. We’ll go up around 11:30 this morning and spend a few hours with him and then go up again after the kids are in bed tonight. Yesterday we got to take Anna Catherine and Colin up after worship. We were hoping that AC might get a chance to hold her littlest brother but it wasn’t to be yesterday as Samuel was needing to be under the light for his jaundice. Colin didn’t have much of a reaction to seeing his little brother other than to say “baby” when prompted. He doesn’t really have a clue what’s going on. After we came home yesterday we had lunch, put the kids to quiet time and took a nap ourselves, planning on going back up after Community Group. However, around 3:30 it was clear that we couldn’t wait till 8 to see him again, so we took off for the hospital and stayed till around 8:30 or 9. We were able to hold him again last evening, which is so good for us. They have been increasing his feedings more substantially than had been planned because he was having trouble keeping his IV in over the night Saturday night. His poor little hand had 4 or 5 prick marks in it - breaks our hearts. Poor little guy has just had a rough go of it. The hope is to get him off of the IV by today since he was having such trouble with it. However, the whole time we were with him last evening there weren’t any problems, so we’ll see. At his 7pm feeding last night he was up to 31ml / feeding. And they were planning on continuing to increase another 4ml every feeding I think till he hits and stays at the 45ml goal (all of an ounce and a half). He weighed in Saturday night at 7lbs and 13oz, up from 7,10 the night before. Good news. It’s funny the things we rejoice in these days: 3 oz gained, green and seedy poop. I’m not sure what he weighed in at last night, we’ll see this morning when we get up there. They weigh him nightly at 9pm - that’s an important marker for how he’s doing overall, so we pay attention to that one.

We tried bottle feeding him again last evening at the start of that 7pm feeding and he struggled mightily to get about 7ml down. And that was with us squeezing it into his mouth. He doesn’t really have any kind of suck response right now. He can swallow some but the whole thing is quite laborious for him and we have to go slowly and take breaks so that his Oxygenation stays adequate. We’re planning on continuing to keep working with him on bottle feeding as he won’t come home with an NG tube. They’ll only release him if he’s consistently getting full feedings either from breast or bottle OR from a G tube. His nurse yesterday told us that we could expect a NICU stay of weeks to get the G tube feedings up to snuff (if we go that route), or a stay of months to get him feeding from breast or bottle. Hard to hear. This is one of our questions for the attending today - what kind of stay are we looking at?

My parents made it home to Carlisle, PA yesterday and Sara’s mom has taken over help on the homefront. Thank you for your emails, your prayers, your thoughtfulness, your love for my family. Yesterday in worship, our friend Tim Udouj preached out of Mark 4 - Jesus calming the storm on the sea. He helpfully noted the 3 questions that get asked: the disciples’ complaint, Jesus’ response, the disciples’ amazement. One thing that struck me about the disciples’ complaint when the sea is raging (“Teacher, don’t you care that we are perishing?” - as Mark records it) is that their fear isn’t necessarily about death. The question is about Jesus’ character and concern for them ... “don’t you care?” They were in the midst of utter turmoil, gripped with fear and their question is about Jesus’ concern for them. Please pray that in the midst of this storm, we would be able to rest in his sure and demonstrated concern for us. Such is all of grace.

And, if I might ... would you pray for me, that I would pray for my son. I know that sounds crazy & it’s hard to admit it, but I’ve noticed that it isn’t my first response.

thank you,
grant

ps - and to the mounting debt that I owe you, I add this: allowing me to process through much of this by my writing and your reading. It seems that it is helpful for me to write. I never think these emails’ll be long and they always wind up being rather lengthy. Until Jesus repays, thank you ...

Some Samuel Pics

2008-03-01T23:00:00.006-05:00

Friends,

It seems to me that one of Newton’s laws of thermodynamics has been at work in our lives these last several days. For every bit of encouraging news there has been an equal and opposite bit of hard news. (Alright, not really Newtonian, but it is sort of how I feel.) Samuel does continue to improve in his ability to take larger and larger feedings. He is now up to 19ml and they are planning on continuing to increase his feedings by 2ml every so often. Bear in mind his goal is 45ml (which is about 1.5oz) by breast or by a bottle. Currently his feeding is done through his NG tube. We are working with him once a day or so on bottle feeding. So far we’ve not made a lot of progress ... he prefers sleeping to feeding at this point. We also have been able to enjoy some very sweet times with him over the last 24 hrs especially. When we’re holding our son in our arms, all the ‘observations’ and ‘concerns’ that we’ve been hearing about sort of fade into the background and we are able to simply enjoy him.

However (and here is where Newton comes in), it seems that every time we meet with a Dr we find out something else that isn’t right with our son’s body. Today for example we got back preliminary results from the MRI he had last night. The resident wasn’t able to flesh this out for us much at all, but he did tell us that while all of the structures in Samuel’s cerebrum are present and accounted for, his cerebellum is ‘under-developed.’ In order to get better details on the brain front, there will be a Neurologist consulted next week. So, our specialist count continues to climb. We’ll try to list them just for kicks (we’ve got to have a spot of humor in all this or we’d spend all day crying). 1) Cardiologist; 2) Neo-Natalogist; 3) Geneticist; 4) Occupational Therapist; 5) Ophthalmologist (Samuel’s pupil’s are misshapen); 6) Neurologist; 7) Endocrinologist (just to make sure his glands and such are secreting what and how much their supposed to); which list does not include all of the folks that will be in the mix to deal with his cleft lip & palate (plastic surgeons, speech therapists, ENTs, etc.) and there is the possibility of a Nephrologist (#8!?) because there are some abnormalities with his kidneys. And there you have it (at this point).

Poor guy has been so poked and prodded over the last 72 hrs. Today he made off good without any new tests except to be pocked once to check to see if he needs treatment for jaundice. He is a little yellow, but not enough that warrants the special light.

Overall, we are doing well, I think. It has been good to be home and spending more time with our other two children. Sara took two trips down to the hospital today, one this morning with me and one this evening with her mother who just got in town this afternoon. We are thinking that two trips a day might be doable, but are having to take it a day at a time.

Attached are some pictures. The Occupational Therapist is having us put the white tape across Samuel’s lip to help him with breathing (opens up his nostril) and to prepare him for surgery (directionally training his skin a little).

Thank you for your ongoing prayers and expressions of love.
grant

on our way home (well, 2 of us)

2008-02-29T20:00:00.001-05:00

Friends,
It is now Friday evening, about 8:00. Sara is being discharged and we are heading home here in a bit. Samuel’s still hanging out in the NICU with folks that can take better care of him than we can at this point.

Today was rather uneventful until this afternoon. Samuel has been handling his feedings better (thru the NG tube) and they are slowly increasing the amount of food they give him. He has a far way to go as a ‘full’ feeding is 45ml and he is currently taking in 7. Alas, we are making progress in that area.

This afternoon was a little rough emotionally. We met with 3 specialists back to back to back who all had a lot of information to tell us. The Geneticist filled us in on his ‘laundry list’ of observations - the list seems to keep getting longer. I’m not sure how helpful it will be for me to try to run down that list as some of those things might wind up being nothing of significance. One way or the other, the Geneticist did indicate that none of the things we’re looking at is life threatening at this point. Much of what we have to do right now is watch how he does - is he digesting food? is he gaining weight? etc.

The Cardiologist was next (Dr. Ben Horne, for those of you who know him). After finishing his assessment and looking at the ultrasound from yesterday, he did run through the 4 or 5 areas of concern that he has with Samuel’s heart: 2 holes, aorta is a little small, the heart is turned a little to the right. The holes will require surgery, most likely by 6 months.

Then we met with the Neonatalogist (i.e., NICU Dr.) - who is the one really overseeing Samuel’s care. He basically went from head to foot and let us know what all he’s seen. He’s ordered more tests (MRI for his head, a lower urinary track test) and will let us know what he finds. The Kidney scan from earlier today revealed some cysts on one of his kidneys and something else potentially wrong with the other. One more thing to keep an eye on. He is urinating and having bowel movements so things are working, the question is just how well.

After the Neonatologist we met with the occupational therapist who we enjoy meeting with because she actually gives us practical things we can be doing to help our son physically as opposed to just giving us more information.

Apparently Samuel is still in the process of transitioning from life in the womb connected to Sara to life outside and on his own. All of his bodily systems are having to figure it out and start working on their own. That means some of the issues we’re seeing could get better and resolve on their own OR there could be issues that will arise as his body continues to take over.

At this point most of the doctors seem to be indicating that Samuel will be in the NICU for at least several more days most likely a good bit longer depending on how he is handling feeding etc. and what they find as test results continue to come in.

So, if you would, please pray for Samuel to eat well. Please pray also that we would have wisdom to figure out how to do the 2-kids-at-home-and-1-in-the-NICU-30-minutes-away thing. Sara’s mom comes in tomorrow (Saturday). My parents have been real troopers with Anna Catherine and Colin at the house. They’re heading back to PA on Sunday. Sadly for them the time they got to come up to the hospital this afternoon to see their grandson was taken up with him getting a kidney scan and then taking in two specialists’ reports. I think in the end they got to see Samuel for about 15 minutes of their 2 hrs here. So it goes, I guess.

Thank you for your prayers. I thought this was going to be a quick email, but alas, here we are again at the end and it was longer than I intended. Thank you as well for your perseverance in all of this with us.

On our way home,
grant

Samuel - 24 hrs old

2008-02-28T23:30:00.001-05:00

Friends,

While it is seeming impossible to us that Samuel is just over 24 hours old right now (11pm, Thursday night -- don’t worry, we’ll be asleep soon!), it’s true. So much has been happening that the delivery yesterday seems like many days ago.

Some updates for you. Sara is doing well. Her body is recovering nicely from the delivery (praise God for not having to go the C-section route) and she isn’t in a great deal of pain. She’s already up and walking some. Today was an especially special day as Sara turned ... well, I’m not supposed to say, but it was her birthday! We celebrated with Anna Catherine, Colin, Grammy and Papaw (my parents) here in the hospital room over lunch. AC and Grammy made (and brought) a cake special for the occasion. We were able to take AC in to meet Samuel. She seemed to do fairly well, though the NICU is quite overwhelming & intimidating even for adults. She gave her littlest brother a few sweet smiles and we left it at that.

In case you’re wondering, given the joys and celebrations, we’ve been on something of a rollercoaster. Here’s why. Most of our interactions with Doctors over the last 24 hrs have included some other/new area of concern. Although none of them on their own are life-threatening issues, taken together they do seem to point toward some kind of significant genetic abnormality. There is no definitive word yet on what, and we aren’t holding our breath for a diagnosis - we just can’t play that game. We are trying to take each report in stride and trust that “What’ere our God ordains is right” and that “God moves in a mysterious way his wonders to perform.” We have known for months that Samuel has a large hole in his heart (the VSD, ventricular septal defect). Today we found out - as a result of the 2 hr ultrasound - that he has a second large hole - an ASD (atria septal defect). The Pediatric Cardiologist who gave us this report also has concerns about Samuel’s aortic arch - that it might become constricted - and that the aorta itself might be too small. They are planning on watching this for the next 5 days. The Dr has indicated that he is confident that Samuel will require heart surgery (to repair the ASD and VSD) within 2008.

He is having trouble feeding - which isn’t altogether surprising given the cleft palate. He is currently receiving feedings through an NG (nasal-gastric) tube. These however, even though they go straight into his stomach, he is not digesting well (if at all). The Drs aren’t sure why this is yet but are continuing to try feeding in hopes that Samuel will begin digesting this food - which is a good step toward being able to breastfeed. He is receiving his nutrition primarily through his IV right now. Apparently that is working as at 24 hrs old he weighed exactly the same as at birth - 7lbs15oz.

The 1st 24 hours have been pretty rough for the little guy, with lots of poking and prodding. So this morning we asked the nurse if she had seen him awake and happy. She said no. That when he was awake he was also fussy. Nothing like his older sister was fussy, no doubt, but still not what you want in your newborn. As the NICU is a nice little stroll (or roll, for Sara) down the hall, and there are things that we must do for Sara’s well-being back here in the room, we aren’t with Samuel a whole lot. However, we were able to get some good time with him this evening - even got to see his eyes some. This time was an encouraging counterbalance to all of the difficult things we have been hearing about his condition.

Thank you for reading such a long email. And thank you for praying for us. The evil one would have us fear and even despair and at times we begin to go in those directions. We are depending on the power of God to rescue us from such darkness. Thank you for participating with God in that process on our behalf.

For my family and with thanks,
grant

He's Here!

2008-02-27T22:30:00.000-05:00

Dearest Friends and Family,

Well, after a long day of induced labor, Samuel Patton Beachy was born this evening at 7:48pm! He weighed in at 7lbs, 15oz and is 21” long.

The Doctors have said he looks good. The clefting is unilateral on his left side and does involve the palate. He is currently in the Neo-Natal Intensive Care Unit and is likely to remain there. The NICU Dr just came in and told us they have observed several things of concern. His blood sugar is low (which could resolve on its on in a few days). His heart is turned to the right - which doesn’t present a problem necessarily as long as the heart structures are good. There are a few other things that (taken with these things) are making the Dr order an MRI or CT scan (I’m not sure which) for Samuel’s head to see if there are other structural abnormalities that didn’t (couldn’t) show up on ultrasound. As well, he is going to order a heart scan to check out the heart structures in better detail.

Thank you so much for your prayers. They have sustained us through many months of unknowns and challenges. While we are so relieved to finally have Samuel with us, there remain many questions (and fears). It seems we have survived one battle and are needing to begin fighting another.

Since Samuel is in the NICU, we aren’t really able to have visitors for him other than immediate family. Thank you for walking this path with us.
grant

Samuel Flipped!

2008-02-26T15:30:00.001-05:00

Friends and Family,
Well well well ... here it is. After nearly 3 months of being breech, Samuel has flipped! (No doubt in response to the prayers of God’s people - thank you!) This means that we don’t need to do the C-Section that was originally scheduled for Monday morning but have the option of delivering naturally - as is our preference.

Another important thing we found out this morning at our last ultrasound is that Samuel is estimated to already weigh over 9lbs. That being the case, the Drs aren’t real keen on just waiting until he decides it’s time to make his appearance. And, Sara’s OB has one open time slot (with a little rearranging) for the induction ... tomorrow morning (Wed, Feb 27)!

So ... the plan is now to be at Greenville Memorial Hospital at 5am tomorrow to begin the induction process. Colin was induced and that process, though slow at first, was eventually rather quick and (obviously) successful - in a total of about 7 hours.

Please pray that necessary plans would come together in the next (gulp!) 14hrs. Babysitters, parents in from out of town, etc etc. are details that we hadn’t been planning on dealing with until Monday, but alas, the Lord’s providence has lead us here. Pray (if I may be so bold as to request that you do) that Samuel would deliver easily and without complication or need for a C-Section.

I (and my family) remain indebted to you for your prayers, love and support. I trust Jesus will repay that debt, as I will never be able to.
grant

Scheduled C-Section

2008-02-18T10:00:00.001-05:00

Dearest Friends and Family,
Given the more than 2 dozen doctors appointments in our family since the new year, I hope you’ll forgive our delinquency in communication. Your constant prayers for and questions about us and our son are a great encouragement to us. We are so grateful for a God who shows us (reminds us) of his love through people like you!

The latest with Samuel is this ... We are scheduled to have a C-Section on Monday morning, March 3rd, 8am, here in Greenville. The main reason for this is that Samuel is breech. While we could try to flip him (through some external procedure called a “version”) we feel like the fact that he has been and continues to be breech may be the Lord nudging us toward C-Section - which, though it will increase challenges after the fact (especially with Sara’s recovery + two small kids + trying to nurse + etc), will provide the easiest transition into ‘the outside’ for Samuel (who will already have enough challenges before him).

So, that is the plan. We still have several Drs appts between now and then as the Cardiologist wants to try one more time to get a look at Samuel’s aortic arch - which measured short or small at the very 1st ultrasound in October. Trust me, “it’s not for lack of looking”.

At any rate, it is hard to believe that he’ll be here in two weeks. If you would, please pray for us in these last two weeks. At this point, Sara and I have different perspectives on his arrival: one of us somewhat mildly dreading it and the other looking forward to it. Frankly we flip flop back and forth so you never know who’s gonna be where on any given day - or at any given hour, for that matter. Please also pray for us to get done all that the insurance company expects us to get done before he arrives. There is seemingly no end to the ‘prior authorization’ that has to take place as we try to make sure certain things (some of them only potential things, at this point) are or will be covered. Pray for our endurance in this process as it is rather arduous.

Thank you for your prayers and encouragement. We have been well loved.

Continuing to need his ‘strength for today’,
grant

Amnio Results

2008-01-19T06:00:00.001-05:00

Friends,
It has been very encouraging this past week as many of you have asked us for an update ... it’s apparent that you are praying for us -- THANK YOU! We are relying on those prayers as we find it hard to pray for ourselves at times.

So this week we got results from the amniocentesis. Samuel’s chromosomes are normal.

This means he’s not a Trisomy. Which means that the hole in his heart and his cleft lip are not the results of a universal chromosomal disorder. While this may sound like very exciting news, we aren’t exactly turning cartwheels because that’s all the more we know -- what it’s not. But so it goes in this life. We don’t get universal knowledge, indeed we couldn’t handle such things.

What is most likely going on is that Samuel has some genetic disorder which may yet manifest itself in other ways. This is all rather confusing to me, but I think the basic deal with genes & chromosomes is this. Chromosomes (Samuel’s got 2 pairs of 23) are made up of Genes (of which Samuel’s got millions). Chromosomal disorders are almost all of them lethal because they are so universal in scope. One problem with one chromosome and everything is effected. Genetic disorders are not as lethal because they tend to be less universal. Most of us carry a bunch of messed up genes. However, genetic disorders can manifest themselves at various points in a person’s development and in various ways. So ... here’s why we’re not turning cartwheels necessarily - we are going to have to live by faith day to day as Samuel enters the world and (we trust) grows and develops as opposed to knowing exactly what he’s got and how it will effect his development and our own lives. It seems that God, in his always good providence, has decided to not reveal to us (at this point) all the ins and outs of our son’s genetic makeup. Our Father is quite resolute in seeing that we trust him daily, which is the best place for us.

Once Samuel is born, they can run blood tests that are apparently more informative than was the amniocentesis. The geneticist may be able to give us a better feel for what Samuel’s got at that point, but maybe not much more than “It seems to be in this family of disorders.” The due date is March 8th. We’ve got an appt with the cardiologist on Wednesday of this coming week. He will determine (once he looks at the hole in Samuel’s heart) what course of action we will need to take as far as where and when to deliver, when (if ever) to do surgery, etc.

So, we’ve got some answers but not all.

Please do continue to pray for Samuel’s development, that we’d have wisdom in making any necessary decisions, that Sara’s discomfort would be bearable, that we would love one another well, that God would grant us the faith to trust him for “strength for today.”

Alas, some trust in medical knowledge; some in amnio results; but we must trust in the name of the Lord our God - he simply gives us no other choice. And it is good.
grant

and his name is ...

2007-12-21T22:00:00.001-05:00

We wanted to take a few minutes and give you an update on our son. First, thank you for all the ways you have expressed your love in these last 2 months since we first heard of our little buddy’s troubles. It’s been something of a rollercoaster and we are thankful that God is faithful and his promises remain true – we have seen first hand that his compassions never fail and that his mercies are in fact new every morning (Lamentations 3.22-23). Which is good news, because we’ve needed all of those mercies and all of that compassion all of these days!

Two real highlights for you:

First, we had another ultrasound (our third in 2 months) this past Wednesday. The Doctor had good news for us. While there is still a hole in our son’s heart (which, for the first time, the Doctor called “a small hole”) and he still has a cleft lip, he continues to grow well! The longer he continues to grow the less and less likely a chromosomal disorder is in play. While we still do not have all the answers, the Doctor was actually rather encouraging during the appointment. The likelihood of a Trisomy disorder is becoming less, but we are still looking at a potential genetic disorder of some kind. To help narrow the range of potentials and better enable us to prepare for the future, we are planning on having the amniocentesis early in January. In the middle of January we should get the results from that test and then be meeting with a cardiologist, pediatric geneticist and a neo-natalogist to begin prepping for our son’s care.

Secondly, we have landed on a name for our son (“Finally!” – I know Mom). Samuel Patton Beachy.

Samuel: In Hebrew (here comes the preacher part …) the root word for Samuel means “to ask” or “to hear”. When Hannah – who had not been able to get pregnant – gave birth to a son, “She named him Samuel, saying, ‘Because I asked the Lord for him.’” Therefore, since many have inquired of the Lord on our son’s behalf, it seemed right to name him Samuel, which means, “asked of Yahweh” or “heard of Yahweh.” As well, this is the name of my Great-Great Grandfather, Samuel Beachy, born 1825.
Patton: We like using family names for our children. “Anna” is Sara’s mom’s name. “Creed” is my father’s middle name. In this case, “Patton” is Sara’s father’s middle name, as well as his mother’s maiden name.
Beachy: Well, because that’s our last name – or, if we were Britons, we might say “surname.”

So, there you have something of an update on the Beachys. Thank you for your faithful prayers and expressions of love.

Pressing on & grateful for your love,
grant & sara

a beachy update

2007-11-20T08:45:00.001-05:00

Friends,
I want to thank you for your many expressions of concern and love for us over these last few weeks. They have not been easy weeks, but -- no doubt in response to your prayers -- we are finding solace in the truth of our Father’s love and care for us and our son. Thank you for your prayers on our behalf, your love expressed in cards, embraces and calls and for, at times, giving us the space we have need to work through these times together. We are so thankful that God has placed us in such a loving family. We know you will understand if there are times we just need to not talk about it.

To (briefly) fill you in, we met with the Maternal-Fetal Medicine Doctor again yesterday morning and had another ultrasound. Overall we are more encouraged than we expected to be. Last month the Doctor had prepared us to expect to see things getting worse: heart condition more pronounced, stomach smaller, feature in the brain measuring smaller and (maybe most significantly) the baby’s overall growth dropping off substantially. So we went in to this ultrasound expecting these to have gotten worse. In fact, they have not. The ‘smaller’ defects that were observed last time, the Doctor didn’t even really comment on this time. The hole is still present in the heart and is more visible and there is still at least a cleft lip and maybe cleft palate as well. Those things the Doctor does not expect will get better. The other things (kidneys, stomach, something in the brain, aorta) probably wouldn’t even have made our discussion yesterday with the Doctor had they not been present as slight abnormalities last month.

What does this mean? Well, from what we can gather, it means the likelihood of this baby being a Trisomy is decreased. Which means we will probably have him around a good bit longer than we were initially preparing ourselves for. Also, his likelihood of making it to term is increased. The longer he continues to grow on track, the higher that likelihood gets. However, given the cleft lip and the heart defect, he likely does have some kind of chromosomal disorder, which, while it may not be lethal pre-term, could manifest itself in a host of issues once he is born.

I realize I’ve used the words ‘probably,’ ‘likely’ and the like a lot. While an exact diagnosis may be getting narrowed down some -- especially as we continue monthly ultrasounds (next one is Dec 19) -- we simply won’t know exactly what things will look like until he is born. But, I guess that is how life works with anything. The Lord gives us a lamp for our feet, period. There is no knowing what the future will bring when it comes to anything, let alone the lives of our children. So we press on, attempting to live faithfully in the present, where the Lord has us. One day at a time. One hour at a time. Sometimes, one moment at a time.

Thank you for your prayers. I am confident they have been to us the life jackets we have needed in these rough seas.

Together and all for Jesus’,
grant

re: some news

2007-10-29T22:30:00.000-04:00

We have felt our father’s care through you these last days. Your expressions of his love have made this path much less rocky and fearful. Thank you.

We met with our Maternal-Fetal Medicine Doctor this afternoon “just to talk.” He patiently answered all our questions from ‘what’s your sense?’ to ‘what’s the worst case scenario.’ He also added to this list several items that he hadn’t mentioned before of “anomalies,” “abnormalities” or “defects.” None of those words do I really like, but that just seems par for this course. From last Friday’s ultrasound they have seen issues related to the brain, the heart, the kidneys, the stomach, the lips, and the little finger. The Dr is fairly confident that all these things taken together indicate a chromosome disorder, likely Trisomy 13 or 18 - both of which are almost certainly fatal, either pre-term or within a year of delivery.

That is not a pretty picture. We have spent many hours since Friday wandering around the valley of the “worst case scenario” and – though that it is an excruciatingly painful thought – we realize that all of this child’s days are numbered, just like Anna Catherine’s and Colin’s. We are just more aware of this reality with our new little son.

We have decided to fore go any further testing at this point. We are planning on watching our son’s development with ultrasound (once a month) and seeing what happens. Come what may, all we know is that we have right now to love our son and we plan on doing that as long as the Lord gives us.

Thank you for your ongoing prayers for us and for our son. We are trusting his providence and good fatherly hand. He is strong and he is good. And that is enough.

grant and sara

Some News

2007-10-28T14:00:00.003-04:00

We trust you will forgive the impersonal mass email. But scores of small conversations on this issue is currently rather hard for us to stomach.

Sara is about 21 weeks pregnant. This past Friday we went in for our “find-out-the-sex-of-the-baby” ultrasound. We found out that it is definitely a boy! At the same time we found out that our little boy has several problems. After meeting with our doctor we were sent to a specialist and had an hour long ultrasound to explore some problems that were detected. The initial results are that our son has several “defects”. Any one of them is not a huge deal in and of itself, but taken together, the doctors tell us, it’s not a good sign. He has a hole in his heart (probably the most serious). There is something in the back of his brain that is measuring small. His stomach did not contain any fluid which may indicate he is unable to swallow. And he has a cleft lip and the possibility of a cleft palate as well.

We have a second appointment tomorrow afternoon to talk with the Maternal-Fetal Medicine doctor about what all of this means. He wanted to give us the weekend to begin to process on our own before overwhelming us with details. What we do know at this point is that all of these issues could point to a chromosomal problem. If that is the case, the likelihood of our son making it to term is about 1 in 10. And of those 10% that make it to term, only 10% make it to 1 year. We don’t know what exactly the Lord has in store for us and our son but already we can see his hand of provision, love and care upon us as we face what seems to be a dark providence.

We simply wanted to inform you all as our family of faith and ask that you would ask our father for his intervention -- in our son’s body and in our spirits. We need wisdom, faith, rest, perseverance and to trust the Lord for daily grace and surely a host of other things we have not thought of. At any rate, thank you for your care for us in prayer. If we need specific things (babysitters, food, advice), don’t worry, we’ll ask.

Thank you.
grant & sara