Monday, December 29, 2008

Stocking Swap

So this year I participated in the Stocking Swap organized by Tara at The Well-Rounded Woman. I was So excited when my package came (a day or two before Christmas) to discover that I was recieving stocking stuffers from Tara herself! I followed the instructions and Kayleigh and I carefully put the unopened box under the tree for Leland to stuff my stocking with on Christmas eve.

And look what I got! Some post it notes (and really, who, in a house full of people can NOT find use for post its?), root beer flavored lip gloss, nail polish, a file, a beaded bracelet (lots of jewelry this Christmas, is that a hint?), some lovely note cards with a "K" (that would be for Kathryn!) embossed on the corner, some Avon lip balm, AND a dark chocolate bar. Yum. (I'm hoarding that while we eat up the cheaper, not good for us chocolate first!). The penguin card in the corner had a lovely note from Tara. I was really touched by her thoughtfulness and LOVED knowing that I'd have a stocking full of gifts on Christmas morning. (Leland tries hard every year but you know..)

Thanks, Tara, it was a lot of fun and I can't wait to do it again next year!

Christmas Recap

I wish that I had made the time to get online on Christmas Day and post an entry. I tried to summarize a bit below. I can't say enough what a surprisingly beautiful and blessed Christmas we had! And why am I surprised? Isn't it just like God to make sure that the day we celebrate His gift of His Son is like that? Christmas was beautiful.

The days that have followed it? Not so much. Nothing earth shattering or even new. We're just sad and missing Seth. Grief continues to have a way of creeping up on me and catching me unawares..

Anyway, THAT's not what this post is about either. I just wanted to share a picture of a few of our multitude of blessings (above). Those of course are the physical trappings. They don't show the peace & grace bestowed upon us daily! My feeble recaps are below, if you're interested!

I have more to share. Tomorrow I'm posting about the Stocking Swap I participated in, sponsored by The Well-Rounded Woman. Stay tuned!

Sunday, December 28, 2008

Christmas Day

Christmas Day was a beautiful, amazing, blessed day. I can only credit the Grace of God and thank those who lifted our family up in prayer. Speaking for myself (and isn't that what this blog is for anyway?), I had mere moments of melancholy; overall, a truly blessed day.

We were SO blessed. The kids had many, many presents with the Christmas Wish and the hospital helping out for them. And us. Leland and I had many unexpected blessings as well. I recieved some wonderful yummy smelling bath items, a framed print I had coveted many moons ago (which soon gets its very own blog post!). Leland got a beautiful trench coat. And the kids.. Kayleigh recieved My Little Ponies, Barbies, etc. The boys got Spy Gear, and books, and movies. Everyone was pleased and blessed. We didn't have to cook. We had a calm easy morning, laid Kayleigh down for a much needed nap and after she awoke, headed out to Leland's mom's for dinner. We were pleased to not get stuck coming or going!

We had started our whole day with a rousing rendition of "Happy Birthday to you, Dear Jesus". I acknowledge that all of our blessings are gifts from our Saviour God who loves us. I am grateful for those in our lives who share their blessings with us so we continue to physically be reminded of that Love.

Christmas Eve

Christmas Eve morning found me running a few errands out of the house. I had an appointment in the morning and afterwards, some things to pick up at the grocery store. The grocery store on the day before or morning of a major holiday is NEVER my favorite place to be but with the record snowfall we've had the last few weeks and working Monday & Tuesday, I just didn't make it out any sooner. (Well, in all fairness, I made it out. Out to finish up the Christmas shopping. Not out to the grocery store.)

When I got home, Cary was feeling a wee bit sad. We had a cuddle and I shared something with him. As I went about my errands, driving to my appointment, walking the aisles in the grocery store, etc., I could hear a gentle whisper. Angels? The prayers of others? The Holy Spirit? As clearly as if someone was whispering from behind me. And the words? "There is hope.. There is Hope." I KNOW that whatever else is going on in the world around me, the grace of God holds me up.

After getting Kayleigh down for her nap, the boys and I made sugar cookies for Santa. (I cheat and use the refrigerated sugar cookie dough from the store). In the midst of that, we recieved our second big blessing of the Christmas season. Remember we were Christmas wished a bit ago? That was wonderful. And just the start of it! We were also "adopted" by Sacred Heart Children's Hospital Administration and Child Life specialists. The presents that were unloaded at our house! Unbelievable. I was surprised to not cry. (And apparently, people were betting on that happening!). Leland and I worried we wouldn't have room for the few presents we had from other family members for the kids.. Where would Santa put HIS presents? As far as problems go, for the kids, those aren't bad ones to have!

Later that evening, I gave the gifts an early Christmas present in the form of pendants which are scrabble tiles with Seth's picture on the back. I got them from HopeRenewed on (have you discovered Etsy? Check it out!) The kids seemed to appreciate them. Kayleigh wore hers for three day straight. "Where's Baby Seth?" "Baby 'ef, RIGHT HEW!" (Baby Seth, RIGHT HERE). After that, we went to church where we heard a lovely messagge on Isaiah 9:6 "For a child is born to us...... And He will be called: Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace." Pastor Glenn expounded on how God meets our needs through those four titles. We closed with a candle lighting ceremony.

After church we headed over to a friends for a bit and then home. (Although we got stuck in the driveway and for just a moment, home was questionable!). Home, kids tucked in, Leland and I did the mighty task of hauling all the presents out to under the tree and off to bed!

The anticipation was in the air!

Monday, December 15, 2008

Candid interview

So, one of my internet friends over at "The Glamorous Life of a Hausfrau" did this cool interview thing and I volunteered. (I know, brave of me, huh?)

Here we go:

1. If you could learn any language, effortlessly, which would you pick and why?
I think Italian or French as, for whatever reason, I've always like the "Romance languages" (I know a bit of French, or used to, having been raised in Canada but you know, what you don't use, you lose).

2. What is your dream job?
Well, I love what I'm doing now (the mom gig, and the secretarial gig, but mostly the mom gig). I've often thought that I'd liked to go back to school and maybe go into social work or counseling. Really, though, I just want to do whatever God calls me to do. I know that might sound like a cop out but I've had my "dream job" change often enough that I know I have little to do with it!

3. What do you never leave home without?
I hate to admit it but it's my cell phone. Bleh. Mostly because Leland HATES it when he can't get ahold of me. Not that he's possessive or calls me all the time or anything but if we're going to have cell phones, we better be using them! (I guess that would make him mostly practical).

4. If you could send a message to your 18 year old self, what would it be?
Oh. My. I have NO idea how to answer this. Hmmmmm... Hold on, honey, it's going to be a bumpy ride! LOL. Seriously, I'd like to tell my 18 year old self that she's stronger than she thinks she is, that if she only knew how much God loved her and could hang on to that, she could save herself a world of heartache. Of course, I'd be a little afraid of altering my path and as painful as parts of it have been, the choices my 18 year old self made have contributed to getting me here! So, I guess I'd stick with Hold on Honey!

5. What is your most prized (non human) possession?
This changes frequently. Currently, I'd have to say it's the locket my mother gave me for my birthday this past August. It's one of those lockets that holds four pics in it and she put in a picture of each of my kids, Sean, Cary, Kayleigh, Seth. I love having them all close to my heart when we're not together. Especially now.

So, those are MY five answers. Thanks for the opportunity to do something a little different, ETW!

Here are the rest of the rules:

"Put the rest of the rules in your post:

1. Leave me a comment saying, “Interview me.”
2. I will respond by emailing you five questions. I get to pick the questions. (for the love of Pete, make it easy for me to find your email know mine).
3. You will update your blog with the answers to the questions.
4. You will include this explanation and an offer to interview someone else in the same post.
5. When others comment asking to be interviewed, you will ask them five questions."

I'll interview the FIRST person to ask in comments! And to read the interview that started this for ME, click here!

Saturday, December 13, 2008

There are angels..

I have been so encouraged and blessed by the comments left on my last post. So much so, that I may have to STOP talking about my four faithful readers and increase it to five or maybe, someday -gasp- even fifteen! Fifteen faithful readers.. I like the sounds of that. But that's not why I logged on to blogger today. Those comments, by new and old readers alike, have been very heartwarming; we've been blessed in SO many ways this week.

I happened to tell someone this morning, a virtual stranger, about Seth. She has a son about the same age, her first child and burst into tears. I'm touched by that kind of compassion in others. Someone at McDonald's, another stranger, gave Kayleigh a stuffed horse; she promptly named it Rainbow. Or Katie. Depending on her mood. A daughter of a friend of ours went out of her way to help ensure our big boys didn't miss out on a fun opportunity they've been looking forward to. And that's just the tip of the iceberg.

We were "Christmas wish" recipients yesterday. A local radio station sponsors "Christmas Wish" every year and one of my very dear friends wrote a letter in to the station nominating our family. We were blessed to receive gifts & gift cards from them, for all of us (not JUST the kids!). It was humbling and heartwarming. (I was told they would post the letter my friend wrote on their website; I'll share it if they do.) (For another description of the Christmas wish, read here.) So many kind things people have done for us on this journey. About the time I start having to remind myself that God DOES love me, even when I don't feel it, something, some ONE comes along to make sure I DO feel that love.

Several years ago, my mom went through a difficult time in her life. I gave her a greeting card at the time, I'm sure I found it in the "encouragement" section of the greeting card store. On Thanksgiving, my mom gave us a gift bag of various items and in it was the front side of that card. She had detached it from the back half, where I would have written the message to her and on the back of what was now basically a postcard wrote: "You gave this to me in my time of need. Now I give it back to you." I don't know the author but I want to share this with you. (If you know the author, please let me know in comments).

There have been Angels in my life.
There have been angels in my life. While they haven't arrived with a blast of trumpets or a rustle of wings, I've known them just the same. They performed their acts in human guise, sometimes borrowing the faces of family and friends, sometimes posing as well meaning strangers. You have known them, too, when just the right word was needed, when a tiny act of kindness made a great difference... or perhaps you heard a voice whispering in a night of sorrow, the words not quite clear but the meaning unmistakable-- "There is hope... There is hope."

So to those of you who have taken the time to respond on my blog, the stranger at McDonald's, the Christmas Wish people, Michele, my mom, etc., thank you. Thank you for continuing to bring us God's message of hope. Our family needs it and we appreciate you for reminding us, no matter what we're feeling, "There is hope".

Sunday, December 7, 2008

Still here. Still struggling.

I"m not even going to attempt to apologize for my lengthy blogging absence.. I do feel badly about the fact that I may have driven off all four of my faithful readers but at this point, I"m blogging as much for me as for any readership I may or may not have.

The past couple of months have been so, so hard. I am still overwhelmed, underfunctioning and missing Seth so badly sometimes it actually takes my breath away. I had an interesting thought yesterday and for anyone who does happen to be following our journey, I wanted to expound on it a little bit..

I am often amazed that every step of this journey has been harder than the last. And for me, it started 3 years ago before Seth was even a twinkle in his Daddy's eye (My parents used to say that!). When I was pregnant with Kayleigh, a friend of mine discovered she was unexpectedly and unpreparedly pregnant. During her pregnancy, she was told her son was very sick, not developing normally, would not live to birth and if he did, would die shortly thereafter. I think because I WAS pregnant with Kayleigh, it hit me a little harder than it may have otherwise. I clearly remember thinking "I could NEVER handle that happening to me".

And then it happened. When I was 12 weeks pregnant with Seth, I received the "there's something wrong with your baby and we don't know what it is" phone call from my ob. The possibilities were endless and none of them sounded very good. Of course, we already know the end of that chapter, Seth was genetically normal with Hypoplastic Left Heart Syndrome. Yes, that pregnancy was very hard. Waiting for Seth was, to that point, one of the hardest things I'd ever done in my life.

Then Seth was born. At five days old, he underwent open heart surgery requiring time on bypass and five days in recovery with an open chest. And I thought all the uncertainties of carrying him inside me were hard! He was extubated, re-intubated, extubated again (a total of 3 extubations). He didn't have the energy to eat and had a g-tube surgery. Finally, 7 weeks later, they told us to bring him home. And I freaked out because it would be HARD. (Seriously, I cried the day they told us we could get discharged in a day or two, I was one scared mama).

Seth came home. And it was wonderful to have him here, and hard. He was tube fed and on a continuous drip PIC line and taking a bunch of meds, and it just felt like it went on and on and on. Now I had four kids, FOUR, and Kayleigh was just barely two and I couldn't do it. But I did. We all did.

When Seth was five months old, he had a heart catheter. And it was hard handing him over to the doctors. And accepting the fact that afterwards, he had to come home on oxygen. And we did that. And Seth came home. And on September 10, we checked into the hospital for his Glenn and the next morning I handed him over to the doctor's for surgery. And it was hard.

On September 17, at 10:30pm, we received the phone call that Seth was not doing well and we should come back up to the hospital immediately. I knew that meant he'd likely coded and I prayed, crying all the way there. And it was hard. And a week later they told us there was neurological damage. And it was hard. And a week after that, things looked more bleak, and it was hard.

Finally, we requested a DNR for Seth, put him on comfort care and loved him while we waited for God to heal him or take him home. And I remember thinking that NOTHING I ever did in my life would be as hard as letting him go. Or making funeral arrangements. Or burying our sweet baby boy. But as I had been all along, I was wrong.

The hardest thing? By far the hardest thing is learning to live without him. Facing Thanksgiving and Christmas, hearing our big boys cry for their little brother. All those things are so much harder than what came before. But isn't life like that? Don't "they" say that "what doesn't kill you makes you stronger"? I look back on all this, still in the midst of it and I realize few things.

I didn't react the way I thought I would. (Do we ever?) I always thought if I ever lost a child, I'd just crawl in bed and stay there for weeks. Of course, I started all this thinking I couldn't even handle a pregnancy with a questionable outcome. God's grace is such an amazing thing. I believe that the "I could never do THAT" thinking comes from the fact that standing on the outside looking in, we are assessing a situation on our OWN strength and thinking we could not handle it. Likely, on our own, we could not.

Fortunately, we do not have to handle the hard things life gives us on our own. We are given the freedom to handle them with the Lord. No, that's not right. We are given the opportunity to let the Lord carry the burden for us, all I have to do is ask for and accept the help.

I wish it were as easy as it sounds in the above paragraph. Life is STILL hard. We live in a fallen, sinful world and bad things happen. Babies die. I"m still a mere human being, I don't have all the answers figured out. I struggle every day. I feel like I learn something new about grief every day. I'm still learning how to allow the Lord to carry my burdens for me. And I have great hope. For as much as every step has felt harder than the one before, the strength of the Lord has continued to lift me up. I am still struggling. But I am still here. And there is bright light at the end of this tunnel, thank you, Lord Jesus!

"My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. (2 Corinthians 12:9)

Tuesday, November 4, 2008

WFMW - Little People

My first ever Works For Me Wednesday! It's a themed one, toys we can't live without! (Okay, that's my paraphrase). I have to say, at our house we love:

Fisher Price LITTLE PEOPLE! My now 10 year old didn't get into them much but my now 7 year old LOVED them when he was younger (like last year). My 2 1/2 year old is starting to really enjoy them now. It's the ONE toy I don't object to having in the living room. (Which is not the same as not having toys in the living room, we have plenty, this is just the only one that doesn't make me want to pull out all my hair). As a matter of fact, we have a toybox full of Little people toys in the living room and they DO get played with often. For awhile, Kayleigh would take a few of the "guys" into bed with her and I could get an extra half hour in the morning.. Hey, that's an idea!

Little People! Works for me! Head over to Shannon's to see what else you have to get this holiday season by clicking Here.

A week?

Good Grief. It's already been a week since I posted. A week. Seven days. Where does time go? I went back to work today. Just one day. I can't decide if it was better to ease into it or if I should have just jumped in with both feet. But at least I'm back. And coming home was the toughest part of the day. I used to come into the house, greet Leland, all the kids and pretty much head straight for the crib in the living room to see how my little man, Seth, was doing. Scoop up the baby and get some cuddle time.. Gosh, I miss that little guy.

I know that I'm a day (or two or three) late and a dollar short but we've had some events here the last couple of days (Halloween, a birthday!). I do want to share about those but I probably need tomorrow or the day after to get to it. Soon. I promise. Don't abandon me, my faithful readers! (I've been informed there are likely more than four of you. If you haven't all jumped ship. Maybe I've bored off all but four of you...).

Hang in there. Bear with me. More coming soon!

Monday, October 27, 2008


Last night, the diamond fell out of my wedding ring. It's a small diamond, the ring's not extremely expensive but it's my WEDDING ring, people. We couldn't find it. (We didn't spend a bunch of time looking for it, it's small, I discovered it missing when I was in bed). So today I walked around with a naked ring finger. I used to think that I'd like a mother's ring (still do really) or an anniversary ring, but what I want right NOW is my wedding ring back. Funny, how that works, huh?

We've been informed (by more than one source) that the percent of marriages that fail after the death of a child (still living at home) is something like 80%. EIGHTY percent. That's 4 out of five marriages FAILING after a crisis like we're coming through. Leland and I have already made the decision to do whatever we can, and seek help when necessary, to make sure we don't wind up there. We have three other kids who need us and we can not let this tear our family apart.

So, in the middle of our grieving.. the diamond slips out of my ring. I admit, the timing sucks. Fortunately, I don't put much stock in this type of thing as an "omen" or whatever. Still, I was feeling sad, a little out of sorts, about everything and losing the diamond didn't help.. And towards the end of the day, I found a penny! If you haven't been reading long enough to understand the signifigance of that, read here.

I am so glad that pennies are plentiful, and God is patient.

Saturday, October 25, 2008

Sorting it out

So, I haven't posted lately. (Duh). I'm struggling just a bit (Duh, again).

When I started this blog, I told my big kids (read: Sean & Cary) that "No, this would not be ALL about Seth." "Yes, this will be about our WHOLE family". Honestly, I intended for this to be a place that I could update people - friends, family, other interested parties - on how Seth was doing. We'd be able to share his milestones here, etc. Okay. So. Not so much.

I'm struggling to figure out where exactly I'm going with this whole blog now. Maybe I should just throw in the towel? I figure by now I've lost any readership I'd managed to attract (yup, all four of you).

And then I realized something.

I need to rethink ALL of it. Not just the blog. Everything. I'm the mom of four children with only three to actively parent. I don't know what that looks like. Sean has TWO younger brothers. Cary is the "luckiest" (as we tell him) because he has a big brother AND a little brother. Kayleigh is NOT the youngest member of our family. I just mentioned to a friend yesterday that I want Kayleigh to KNOW that she IS a big sister. I don't know what any of this looks like.

So, apparently, for now, this blog is a metaphor of my life. I guess that we'll figure it out together. God, my husband, I and the kids. And as best I can, we'll let you come along for the ride. Hang on! I don't know what's around the next bend!

Your own ears will hear him. Right behind you a voice will say, “This is the way you should go,” whether to the right or to the left. Isaiah 30:21

Saturday, October 18, 2008

Another Good bye

Friday (yesterday) was Seth's Memorial Service. His life was celebrated in a beautiful manner. I"m so blessed to be a part of a church community with such willing and talented people. Beth put together a beautiful slide show. Cary sobbed with each picture. And while I took many of those pictures, and I was the one who sent them to Beth, I was very touched by the presence of all those people who loved Seth.. Their presence IN the slideshow and the presence in the sanctuary of all the people who love our family. Many of the people who attended yesterday's celebration for Seth hadn't actually met our sweet boy. Due to his heart condition, our visiting and travels were kept to a bit of minimum over this past summer. The fact that those people would still gather to honor his short life was very meaningful to us.

Pastor Glenn gave a loving message, Randy gave a sweet tribute. The song "Glory Baby" by Watermark was sung beautifully by April Young and Jillian Willis. The food was plentiful. All in all, it was exactly what I "wanted" (knowing that nobody ever WANTS to do this). I found it to be a meaningful, beautiful goodbye, worthy of our sweet baby boy. When it was all over, I was spent.

I woke up this morning, though, and realized that even as I thought that could be a "final goodbye" that was not to happen. I think (and I'm still very new to this journey) that we'll have a series of goodbyes.. every day, everything we have to do without our baby Seth will be a new goodbye. We took Cary to his football game this morning. Our entire family. Minus Seth of course. And in every first time and next time that we do anything "minus Seth" will be a good bye.

Until we are with him again.

Friday, October 17, 2008

Another day..

So, yesterday we said our final goodbye to our sweet baby boy and buried our son. And appropriately enough, in a week that had so far been sunny days (which at least make it a little easier to get going), yesterday was cloudy. It's so interesting to walk this journey. I'm discovering a confluence of what I think it should look like, what I think others think it should look like, and what it actually looks like. For example, the burial yesterday just didn' t seem that difficult (I'm fully aware that a big part of this is that I"m still numb and in shock). What DID hit me the most though, was the visitation. I realized with a jolt that this was the last time I would see Seth.

Wait, let me correct that last statement. NOT the last time I would SEE Seth. I firmly believe that we WILL see Seth again in Heaven. I also do not claim to have any idea what that looks like. Given how broken our earthly bodies can be (and Seth's was, inside at least), I don't tend to think we'll see each other looking like we do here. And of course we have pictures and I'll see Seth in those. That was the last time I would see his sweet little body and I will not have the joy of holding him in my arms, smelling his sweet head. I confess that is a hard pill to swallow.

But today, today is a new day. Today is the day we celebrate what we did have of Seth's life. While I can't say I am looking forward to it, I can share that today the sun shines and the clouds have dissipated (for now anyway).

And with all praise to our Lord (and this will really mean something to those who know me well), today I awoke with a song in my heart. "Saviour, He can move the mountains. My God is mighty to save, He is mighty to save. Forever, Author of salvation. He rose and conquered the grave. Jesus conquered the grave." (Ben Fielding & Reuben Morgan).

Wednesday, October 15, 2008

Mercies every morning

One of the things I've ALWAYS counted on is a "fresh start" in the morning. No matter how bad things look at night, a new day always shines just a bit brighter. There's always hope.

It's dark outside. Our house is finally quiet. I should drag myself to bed. But in a very real way, tomorrow does not shine brightly for me at this point. Tomorrow is the day we bury our son. I honestly have no idea how I"ll get through the day. Except, of course, I have three other children who need me. They need me to be their mom and help them deal with their grief. And I need to figure out how to do that while dealing with mine.

And in spite of my fears & worries, the sun WILL rise tomorrow. (It may be behind cloud cover but it will be there). The world will go on. We'll get through saying good bye to Seth, again. And we WILL move forward in hope.

But I will call on God, and the Lord will rescue me. Morning, noon, and night I cry out in my distress, and the Lord hears my voice. (Psalm 55: 16-17). Thank you, Lord for being our strength morning, noon, and night. I praise you for hearing my cries and rescuing me.

Tuesday, October 14, 2008

The Art of Understatement

To say this is a difficult week would be.. well.. see title above! We have fought our way this week through the fog in our lives and worked out arrangements for Seth. I had no idea there would be so many details, etc. to deal with. I find myself thinking "does it even matter?" at pretty inopportune times. I'm inventing new words having declared our session at the funeral home as the "least lousiest" it could have been. (With much thanks to Rollin, a very kind and compassionate man, although, there was head tilt and I almost burst into giggles when I realized that.. Cathey, that's for you! For the rest of you, I might explain later ... or not).

At any rate, arrangements, such as they are, have been made. We will be having a visitation for immediate family on Thursday followed by Seth's burial. Friday will be a Memorial Service at 11am at our church, Timberview Christian Fellowship, followed by a luncheon. I don't expect any of this to get any easier.

I can only say how grateful I am for the hope we have in our lives. Thank you, Lord for holding us up when we fail ourselves.

Sunday, October 12, 2008

Broken Hearts, Whole Heart

Seth received his brand new whole heart, in Heaven, at about 5:30 this morning. It goes without saying that our hearts are a little more broken today. He will be missed more than we even know....

Wednesday, October 8, 2008

October 8 - email update

I guess no news is good news..

Seth is the same. He's on a very large amount of sedation but we do seem to have finally controlled the rigidity and posturing. He's such a sweet beautiful baby, looking at him it's hard to believe he's so broken inside...

We took a "field trip" yesterday and with our nurse and oxygen tank, took Seth out to the Healing Garden here on the SHMC campus. It was beautiful. Leland and I both cherish the time we spend right now, holding, loving on and praying for our sweet boy.

We appreciate all of you lifting us up and want you to know that we do feel those prayers and know we are surrounded by love.

Waiting on the Lord,

The Unit

So, I confess, the TV show The Unit is a vice that Leland and I share. It is one of the few programs we actually try to sit down and watch together every week (after the kids are in bed). Last week was the season opener. I was particularly touched by one scene and God really used it to speak to me. In retrospect, I truly believe that God was preparing me for winding up where we are now.

Spoiler alert: If you didn't see the season opener a week ago last Sunday, I'm about to ruin it foryou.

In the show, Jonas & Bob & the other guy who I can't remember (not Mac) are holed up in a cabin in the woods. They are trying to protect the vice president elect from terrorists who have already killed the President of the US and the President elect. All their efforts to thwart the enemy fail, they are out of ammunition and expecting the end to come any second. Jonas, who has been somewhat injured by shrapnel, with all the effort he can muster, pulls himself up to the big clawfoot tub where they have hidden the VP elect and lays across the tub. He expects that the very last thing he does will be this last ditch effort to protect this other man. (The calvary, Mac of course, shows up at the very last possible second. "What took you so long?").

That scene spoke so intensely to me. I kept thinking about it. I want to throw myself across Seth in that manner. I want to drape myself over him and with my last effort, everything I have, I want to protect that sweet boy. And as much as I want to do that, I can not. But all is not lost. God can. And does. GOD can throw Himself over that sweet baby I love so much AND our Saviour is the calvary coming at the last moment. At the cross, this has already been done for us. Furthermore, if I keep throwing myself over Seth, I make it a little harder for Jesus. At this point, it's just my job to get out of the way.

And because God works in mysterious ways, I"ve recently been reminded in more than one way & place of Psalm 18: 2. "The Lord is my Rock, my Fortress, and my Deliverer; my God, my keen and firm Strength in Whom I will trust and take refuge, my Shield, and the Horn of my salvation, my High Tower" Thank you, Lord.

Saturday, October 4, 2008

October 4, 2008

I'm having a hard time figuring out how to start this email..

Leland and I are staying at the hospital around the clock.

Our family is TRULY learning what it means to "let go and let God".

Someone sent me the following forward..

I can't remember having read it before (although I certainly may have). I took the liberty of deleting the stuff on the bottom (chain email stuff). Forward it on or not is up to you. But DO think about what it says....

You always hear the usual stories of pennies on the sidewalk being good luck, gifts from angels, etc. This is the first time I've ever heard this twist on the story. Gives you something to think about.

Several years ago, a friend of mine and her husband were invited to spend the weekend at the husband's employer's home. My friend, Arlene, was nervous about the weekend. The boss was very wealthy, with a fine home on the waterway, and cars costing more than her house. The first day and evening went well, and Arlene was delighted to have this rare glimpse into how the very wealthy live. The husband's employer was quite generous as a host, and took them to the finest restaurants. Arlene knew she would never have the opportunity to indulge in this kind of extravagance again, so was enjoying herself immensely. As the three of them were about to enter an exclusive restaurant that evening, the boss was walking slightly ahead of Arlene and her husband..

He stopped suddenly, looking down on the pavement for a long, silent moment. Arlene wondered if she was supposed to pass him. There was nothing on the ground except a single darkened penny that someone had dropped, and a few cigarette butts Still silent, the man reached down and picked up the penny. He held it up and smiled, then put it in his pocket as if he had found a great treasure. How absurd! What need did this man have for a single penny? Why would he even take the time to stop and pick it up? Throughout dinner, the entire scene nagged at her.

Finally, she could stand it no longer. She casually mentioned that her daughter once had a coin collection, and asked if the penny he had found had been of some value. A smile crept across the man's face as he reached into his pocket for the penny and held it out for her to see .She had seen many pennies before! What was the point of this?

'Look at it.' He said. 'Read what it says.'

She read the words ' United States of America '

'No, not that; read further.'

'One cent?'

'No, keep reading.

'In God we Trust?'



'And if I trust in God, the name of God is holy, even on a coin. Whenever I find a coin I see that inscription. It is written on every single United States coin, but we never seem to notice it! God drops a message right in front of me telling me to trust Him? Who am I to pass it by? When I see a coin, I pray, I stop to see if my trust IS in God at that moment. I pick the coin up as a response to God; that I do trust in Him. For a short time, at least, I cherish it as if it were gold. I think it is God's way of starting a conversation with me. Lucky for me, God is patient and pennies are plentiful!

When I was out shopping today, I found a penny on the sidewalk. I stopped and picked it up, and realized that I had been worrying and fretting in my mind about things I cannot change. I read the words, 'In God We Trust,' and had to laugh. Yes, God, I get the message.

It seems that I have been finding an inordinate number of pennies in the last few months, but then, pennies are plentiful! And, God is patient.

That's the whole gospel message simply stated.

October 3, 2008

As you know, yesterday, we decided to stop any further "life saving" measures on Seth. Basically, this means we don't want him to suffer anymore. His little body has already been through so much. Neurology is not optimistic for a recovery. We are keeping Seth as comfortable as possible with medications and our presence. The biggest issue is that the more we keep him comfortable (with sedation, etc) the more that compromises his respiratory system. We have put a DNR in place and the includes the fact that Seth will not be re-intubated should that become necessary.

At this point, its between God & Seth. We are spending as much time with him as we can and LOVING on him like crazy. The doctors can't say if we'll have a few more days or weeks. I KNOW that our Saviour can give us years.. And we would happily take them but not at the expense of Seth's suffering.

If you're reading this, I"m asking you to continue praying for a miracle of healing for Seth. I know many of you have never stopped but I wanted you to hear from me that WE are still praying for and believing for that as well. We've just changed the circumstances under which we will let interventional medicine help! Thank you for loving & supporting our family.

October 2, 2008

Please continue to pray for my friends Kathryn and Leland and their six-month old son, Seth. They got very bad news today that the neurologist doesn't feel Seth is going to be able to live on his own and the family has decided to let him go without extraordinary measures. His health is failing and know one knows for sure how long he will live. It's such a devastating situation for this family and all who know them. Please continue to pray for them as they go through this terribly painful process of giving their baby back to God.
(Posted on a friend's blog as a result of my phone call - I personally did not send out an update on this day)

October 1, 2008

Wednesday already?

I apologize for not sending out an update after yesterday's neuro consult.. I'm feeling rather drained today and so I"m doing tonight's update in bullet format just to get it done.
  • Tuesday, the neurologist said that he's not seeing further signs of damage to Seth's brain. While he still states we're looking at moderate to severe, he believes that we can say Seth has "stabilized" neurologically.
  • Tuesday Seth was taken off c-pap and put on a nasal cannula (little prongs in his nose, oxygen tubing around his little sweet face).
  • Today, Seth's last chest tube was pulled.
  • Because the chest tube was out, I GOT TO HOLD SETH!! YIPPEE, YAY!!
  • Seth is still showing "clonus" (stiffening of and tremors in his limbs). The neurologists are starting him on a medication to try and control that.
  • Seth continues to run a fever intermittently. No apparent sign of infection. May be "neurologically induced".
  • Seth occasionally has a "bradycardia" (sp??) this means that periodically his heart rate dips very low. (should be 120 - 140, sometimes runs in the 90s with dips as low as the 70s). The cardiologist thinks this is "vegal nerve stimulation" and it is "self-limiting".
  • Physical therapy & occupational therapy have been working with Seth. He's tolerating it well.
  • Feeds are being re-introduced (on portagen due to a possible chyle thorax, AGAIN (leaking of the lymphatic system)). (through Seth's g-tube)
  • Seth is coughing better (still weak but coughing) but still not showing gag reflex. Currently on an IV med to reduce oral and lung secretions.

We have another care conference on Thursday. I have no idea when we might be bringing him home.The big kids are all holding their own.. as are Leland and I. I know that's a lot of specifics..

Like I said earlier, these emails help me process info as well as share it and sometimes I just need to spew it all out there and look at it for a bit myself..

And, with those specifics, you can offer up specific prayers!

September 29, 2008 - PM

Seth was extubated today. It was a bit of a "debate" as the "new" concern is: Can he protect his airway? Seth didn't seem to be gagging at all and had a "weak cough". Also, immediately prior to when we were going to extubate, his heart rate dipped (as low as 70, but mostly in the 90s) and that caused concern (ESPECIALLY for Seth's parents!). In spite of all this, the breathing tube was removed about 2:00 this afternoon. Seth was put on c-pap (a little mask over his nose). He's doing pretty good. As the day wore on, he did seem to cough a little. His heart rate was higher. Late this afternoon they started him on an IV med to dry up some of the oral secretions and that will help as well.

As of our last check in (via phone), Seth's heart rate was in the 120s (he was sleeping so that's where it should be) and he seemed comfortable. The neuro should be doing a clinical assessment again tomorrow so we'll see how things go from here.

We continue to put one foot in front of the other with the help of our Lord, often seen through the support of all of you!!

September 29, 2008 - AM

The big goal for today is to extubate Seth. All of yesterday, while on the vent, he was on "spontaneous" so he was doing all the work anyway. PLEASE pray that Seth does wonderfully off the vent! Getting him breathing all by himself is a huge step right now..

Thank you!

September 27, 2008

So Friday was "care conference" day. I think Leland and I were a teeny bit fearful of what we might here. It turned out fine. Some uncomfortable things were said regarding decisions that may (or may not) have to be faced in the future but the overwhelming consensus was that we're a ways from that point and currently, nobody is giving up on Seth. The first goal is to get him breathing on his own. Once the vent is removed, Seth can be weaned off some of his sedation and we can get a better idea of how he's doing clinically. The neurologist repeated that we may be looking at "moderate to severe" damage. The cardiologist voiced some concern about whether or not Seth would tolerate needed surgeries in the future. Those are not things that we have to worry about RIGHT this second however. We were again reminded that only time will show how much damage Seth's brain has or hasn't suffered and so we wait! (And pray. And pray some more!)
Today was, once again, a new day. And God's mercies are new every morning (and I dare say, afternoon, evening & night as well!). I was originally a little under the weather and so I didn't get up to the hospital until about 3pm. Leland got up sooner. He arrived bearing cupcakes to celebrate Seth's "half-birthday" (6 months old today!). The nurses sang Happy Birthday from the nurse's station.
Today Seth was running a low-grade fever (much lower than lately). His cultures have all come back negative so far. He's been weaned quite a bit on the ventilator. As of 9:30pm he was still intubated but doing most of the actual work of breathing on his own. He seems "calmer" today and has not been exhibiting the "posturing" (stiffening of limbs) that we were seeing earlier this week. Over the last couple of days we've seen him open & close his eyes although he rarely appears to focus. I couldn't be ABSOLUTELY sure but I"m fairly positive that he DID track my finger super-briefly today. All those things keep us hopeful. More than that of course, we find our hope in the Lord!
Please join us in offering prayers for some of our family in Christ. The Thomases and family, as they grieve the loss of Mitch, son, brother, wife. At the too young age of 28, he went home to the Lord this week and his life was celebrated in a service at our church today. Also, the family of my friend, Lily, especially her brother, Robyn. He was diagnosed with cancer earlier this summer and now has more tumors and signs of a different cancer. Please offer up prayers for comfort, peace & healing for these families. Thank you so much for your support!

September 26, 2008

I wasn't going to send an update tonight (think "no news is good news".. or at least no new bad news!) but I've had a couple of voice mails and phone calls and realized people will be concerned if we're too quiet.

Seth is still intubated and being kept fairly sedated. The nurses made it a priority to let me hold him today (around all his tubes, it was quite an adventure!). He's still fighting a fever that comes & goes (no known signs of infection otherwise). As a bright spot to our day, the neurologist did apparently say (I was out of the room) that he thought Seth was a bit more reactive today. (Not that his parents can tell!).

We have a "care conference" tomorrow which is basically ameeting just to make sure we're all the same page. I'll probably send out a "newsy" update after that even if it's just re-capping (honestly, these updates help ME process things as much as keeping all of you informed!). Thank you so much for your continued prayers and support.

"So we keep our eyes on God until He shows us his mercy" (from Psalm 123:2)

September 24, 2008

Seth's 2nd MRI

Okay, the suck-y part is I don't feel like we REALLY know anymore than we did earlier today (and I'll get to the details in a moment). The overwhelming POSITIVE part? Our God is SO big and he doesn't need "wiggle" room but really, the neurologists leave a GREAT BIG HOLE open for our Saviour to walk through with a miracle! That's what we're praying for and asking you to join us in.

Seth's 2nd MRI did show more "damage" then the first MRI. The neurologist seems to feel that at this point Seth would fall somewhere in the Moderate to Severe disability range (Severe being needing TOTAL assistance). He is seeing some clinical signs that could indicate brain stem damage but nothing definitive on MRI (although he states that the brain stem is a hard area to image). At this point we are in a "wait & see" mode (again.. some more.. still). Seth's brain could continue to deteriorate over the next week or so. Without a new incident, we would need 1- 2 weeks to know that he's stabilized as far as progression of possible brain damage. (The code was last Wed so we're a week out.. One more week).

We DO know that the brain is a miraculous amazing thing created by our Lord. HE can heal it even if the doctors don't believe that can happen. Please pray for no further progression and even for improvement, only the Lord can do THAT!

When Seth was dedicated at our church a few weeks ago, our lead pastor read a verse for him. From 1 Timothy 1:12, "I thank Christ Jesus our Lord, who has given me strength, that he considered me faithful, appointing me to his service." This side of Heaven, we can't know how many lives Seth has already touched but he's only 6 months old. I would imagine God has a lot more in mind for Seth's service to Him! I'm anxious to see that unfold.

September 23, 2008

Seth had to be re-intubated last night/this am (about 1am). The hospital called us at 1 am to let us know..

At this point the neurologist is very concerned about deep brain damage, possible brain stem involvement. Seth had a repeat MRI done but we haven't heard results yet.

PLEASE keep praying. I'll update later.. Also, if you attempt to call, please do not be offended if we don't answer. We're doing what we can here. Thank you!

September 22, 2008

We saw the neurologist this am. He said that Seth has some bilateral deep (some word I can't remember.. core?) damage per MRI results. It was his opinion that we would not see a rapid recovery to where Seth was before all this happened and that there would likely be some long term damage. Emphasized that it would take TIME to really know what long term effects were. He did say that the EEG showed abnormal slow brain wave activity but it was better today than yesterday. Sounds like they'll do a repeat EEG in a week or two.

All in all, *I* feel pretty optimistic! We were warned that neurology would paint a "bleak" picture and while, as I told Leland, it wasn't all "sunshine & rainbows" none of what the neurologist told us was much different than what we'd already been told by other drs. AND God is so much bigger than the neuro and these MRI results. It it TOTALLY in Seth's favor that' he's young as he is and we'll just pray him through this and do what we can to help!

He's still on Cpap and right now that's our biggest hurdle, getting him breathing on his own. And he's been fighting a fever over today with a bit of an accelerated heart rate.. Those things could be specifically prayed for as well. Thank you for holding us up!

Today was an "easier" day than yesterday and then I expected and I KNOW that's due to God's faithfulness and love, and His love as shown through all of you to us!!!!

September 21, 2008

I wish I had a good update for today but it's not. I mean that qualitatively AND quantitatively. We're at the point where good info is hard to come by!

The doctors are VERY concerned about Seth's neurological condition. The neurologist examined him this morning (Leland & I were not there because we were all at church). They ordered an EEG which they are letting run a LONG time (basically, until the leads start falling off his head).

It's all very confusing to Leland and I as Seth seems to be exhibiting withdrawal like symptoms but the nurses and doc think he might be having seizures, etc. One of the ped icu docs today was NOT very encouraging (at all).

Today is Leland's birthday. As we didn't go shopping, Cary cobbled together a present for his dad from stuff he owns. One of the items was a "prayer box" that he made several years ago at a VBS. Leland handed it to me and said "read the bottom".

"Be joyful in hope, patient in affliction, faithful in prayer" (i think it's Romans 12:12). Our God is so faithful to encourage us with that now and we're clinging to that and praying for Seth.

Thank you for holding us up in this difficult time. (I"ll send an update tomorrow and hope to have better news.. or at least EEG results).

September 19, 2008 - 3:30ish

Seth is off the vent! Yay. He's on nasal cpap (big old mask like thing on his nose to make sure he's getting enough oxygen) but he's doing VERY well, satting mostly in the 80s. He had an echo today, haven't heard any results on that (assume it's fine).

He also had a brain MRI. That did show some damage from lack of oxygen, most likely occurred during the events of Wed. night. He also is not quite himself. Leland & I had assumed that was due to the sedation he's still on but the ped intensivist seems to think that's indicative of neurological function. We're told it will just take time to see what exactly is going on.. We KNOW that time & PRAYERS can take care of all of it.

September 19, 2008 - noonish

Seth is doing well. Still on the ventilator but much lower settings. They pulled one of his two chest tubes overnight and are watching a possible slight pneumothorax. The goal is still to extubate but prior to that we've just done an echo to check heart function and while he's still somewhat sedated, he's being sent for a brain MRI. This is just to insure that there was no neurological damage during the code. More a cautionary measure (do it now while he's still sedated and intubated) to prevent possible problems later.

We're feeling very blessed today as he really is doing MUCH better! (What a difference a mere 36 hrs can make.) We're praising God for keeping Seth in His care!

September 18, 2008 - PM

Praise God today was a WAY more peaceful day than yesterday.

Seth recovered quickly from last night's code... much quicker than his parents apparently! Today was spent weaning down his ventilator settings, the immediate goal is working towards extubation.

It was a calm day, as of 9:30pm, Seth was doing well with the decreased vent settings.

I want to say how appreciative I am of the prayers, words of support, etc that we've recieved over the last while but especially the last 24 hours. From church family to hospital staff, everyone has been extremely supportive and we are grateful!

September 18, 2008 - 1;30AM (ish)

I'll just begin this by saying that Seth is currently stable.

Today was a rough day in that there was some miscommunication regarding iv/pic lines, Seth had a line placed (in a spot that he should not have had one, due to his recent surgery, but no damage done) and it blew.

But all that was nothing compared to tonight when he coded. Apparently, he had a blockage in his breathing tube and it caused his sats to drop, heart rate plummeted, etc. The staff at PICU performed CPR, called Leland & I, etc. As I mentioned above, he's currently stable.

The next "hurdle" is gaining a decent line for iv access (he currently has a couple of small iv lines). He's a pretty sick boy right now.

We're praying for rapid improvement. Thank YOU to all of you who have been praying with us so faithfully.

September 17, 2008

Good morning all! Haven't we been blessed with beautiful weather lately? Hope most of you have had a chance to enjoy it!

So when we last left you.. they were trying to get a new PIC line in Seth so they could remove his central line in his neck (they do NOT want a clot in one of those upper extremity areas, that blood needs to be able to travel to his lungs). That was unsuccessful. The end decision was to put him on heparin to avoid a blood clot in that central line. They were hoping to avoid peripheral lines (regular ivs) due to the amount of meds, etc he's taking in and the shape of his veins.

So I called up this am to see how his night went. Overall, it went well. However, that central line they were trying to get out yesterday and ended up leaving in? Yeah, it started to leak. Now, according to his nurse Jake he's "an IV junkyard". Seth has an IV in both hands and feet. Please pray for those to hold up and do the job. For Seth's lungs & respiration to be well enough for him to get off the ventilator SOON (today would be good!). For his doctors & nurses and peace for our family.

Thanks again for all your support. We couldn't do it without God and those of you loving us in His name sure help us to feel His presence! Thanks SO much!

September 16, 2008 - AM

Well,technically it's pm since it's 12:30..

Everyone at our house seems to be feeling better (Praise, GOD!). Sean & Cary went to school today. Kayleigh informed me "I no spit up today mom". I feel better. So we're on the upswing there.

Seth is still taking things slowly. They worked on weaning a bit last night but didn't get very far. This am, they tried to pull chest tubes and put in bulb syringes. They couldn't get one to seal and in the process he developed some pleural effusions and one of his lungs collapsed a bit (the left I think).. they ended up putting the chest tubes back in. Currently, they want to pull the central line in his neck as it comes close to a suture line internally. They're trying to put in a pic line, we've been here since 11 am and have barely had a chance to even see Seth..

The cardiologist says he feels like Seth is doing well so we're just following Seths' lead on his getting better..

Thank you for your prayers and support!

September 15, 2008

Seth is doing that whole two steps forward one step back thing.

They got him on cpap today (on the vent but he was doing most of the work) and after a bit his blood gases were bad and they had to increase vent settings..

I didn't make it to the hospital today at all due to being sick but am hoping tomorrow is a better day all the way around.

Thank you for lifting up our family!

September 14, 2008 - PM

Well, today was more of the same. Seth's arterial line blew a couple of days ago (or maybe even just yesterday..) and was removed. Today they had to put in a new one so they could get more accurate blood gases (to aid in weaning off the vent). Currently he's still intubated and sedated. He looks good as far as color etc and hopefully we'll see some forward movement tomorrow.

September 14, 2008 - AM

Well, the "waking up" Seth and pulling out his vent didn't work yesterday.

When they shut off the breathing tube to see how he'd do, his sats dropped, etc. The plan was to wean vent. settings down overnight for extubation. However, he had lots of secretions and junk in his lungs. That was suctioned out, sent for culture, they put him on a couple antibiotics. He slept fairly restfully according to his nurse and today we'll try again!

Please keep praying for his healing and for the doctors.

On the homefront, Cary is better and mom's still gargling with salt water (says she feels more or less the same).

September 13, 2008 - AM

Seth had a good night. He looks very good this am. He's still pretty sedated. At one point they had talked about doing another bronchoscopy but then decided that was unnecessary.

Currently, they've changed him to a short acting sedative while they turn off the others,remove his breathing tube and wake him up. They have his arms in restraints so he can't pull out, well, anything (and he has lots of options!) Please keep praying for his healing. I hate the idea of him coming out of this sedative and being uncomfortable and in lots of pain, he's so little...

ALso, Cary was throwing up all night (from about 3:45 am till after 8am). and my mom feels a cold coming on. Please pray for health at our household. thanks!

September 12, 2008

Seth is doing MUCH better this am. He's a little pinker. Still pretty heavily sedated and running a low grade temp (but that's coming down). They did a bronchoscopy and cleared some clots and yuckky stuff from his breathing tube and his lungs.

Sean & Cary (esp Cary) are having a hard time today, it was a special lunch at school and I went to lunch with them. Cary did NOT want me to leave. Please continue to lift up our family as you feel led. We are SO grateful for your prayers and support.

September 11, 2008 - Glenn complications

Seth did wind up going back to surgery. His chest tubes were leaking enough that the surgeon and cardiologist thought it best just to go in and figure out what was going on.

Apparently, when they closed after the first surgery earlier today, a sternum wire nicked an artery. This artery was also directly above the right chest tube so it wasn't clotting because the chest tube was irritating it. He's back in his room. Stable. Sats are in the 77-82 range (good) and he looks even better than he did post op the first time. Leland & I will head home in a little while (as it's already after 10 and we've been here since just after 6 this am!).

Tomorrow's a new day and another step on Seth's road to recovery!!

September 11, 2008 - post Glenn

Seth is still bleeding from his chest tubes.. It had slowed down but has picked up enough that the nurse has sent up a few "red flags"..

They're doing some blood work and watching him for an hour but it's sounding like the surgeon may have to take him back downstairs.. Please keep praying.

September 11, 2008 - Glenn surgery day

Seth had his Glenn procedure this am..

This is the 2nd of the 3 staged surgeries for his heart defect. Surgery went well. We haven't seen him yet but he IS in his room in the PICU. We have a nurse we're familiar with (and like) from our first stay.

His sats have been up & down and apparently he's running a fever. Please pray for his recovery. We would like to see his sats stabilize and we expect to see some swelling but would like it if that dissipated quickly. PLease pray his heart/lungs/body adjust well to the new blood flow and pressures created during this surgery!

Since I started to type this, Seth has been moved to his room (310 PICU SHMC). He's doing pretty good, running a bit of a fever. Has had some bleeding from his chest tubes and they're closely watching it to be sure they don't have to take him back down to surgery to search for a clot..

My mom is staying at our house (THANKS MOM) with our big kids. Thanks to all of you for your prayers.

August 22, 2008

Seth seems to be fine.. He's a tad bit bluer over all.. Dr. Carl said "*I* caused that" by ballooning the aorta during the cath.. Seth isn't fighting the nasal cannula AT ALL so that's a positive at least.. I"ve given him some tylenol today (just one dose so far), he's sleeping a lot but he does seem okay.. I wish I could just sit and hold him all day but of course, that's not happening...

We do have a sat monitor. It's just a little hand held one. We actually took it up to the hospital yesterday and had him on both ours & theirs for awhile.. That increased my confidence in bringing him home! He's satting higher on the o2 (like high 80s) but still seems pretty fatigued..

August 21, 2008

We got discharged late this afternoon (around 4). Seth is home, on oxygen (just a nasal cannula - the kind that goes in his nostrils). All in all, he's doing well. Still a bit uncomfortable but Tylenol takes care of that. He's doing okay with his feeds (through the feeding tube) and with the oxygen his sats are staying in a good range.

His second surgery WAS moved up. Originally we had been told August and he was doing so well, they bumped us to Sept. We had tentatively scheduled for 9/23 but that's been changed to Sept. 11. We'll be pre-admitted on 9/10. Recovery is expected to be 7-10 days.

Thank you all for your prayers for our family!

August 20, 2008 - post cath

Seth came out of the cath relatively okay. Dr. Carl said that he found things as expected, no surprises. The narrowing of his aorta was improved from a pressure of 30 to a pressure of 15. He had some "collaterals" (extra veins that are growing) and some narrowing of his pulmonary aorta. These are things that can be fixed at a later date or during surgery.

He had a rough day today. Coming off the sedation was hard for little Seth, he wasn't really himself and his O2 sats have been much lower than usual. Currently he's on a nasal cannula with a "whiff" of oxygen. We're praying for GREAT improvement by tomorrow. If he continues to struggle with his sats, his next surgery will be moved up...

I'll post tomorrow as I hear more.

August 20, 2008

I apologize for not being better sending out updates.

Seth is doing amazingly well. He's now on Nutramigen (the plus about infrequent updates is you all missed the whole no breastmilk saga, lucky you guys! ). He gets it mixed at 26/cal per oz (normally 20 cal/oz) and he takes some by mouth and the rest by his g-tube.

Today he's having a heart cath done. He was pre admitted last night and they're doing the procedure right now. So far we know he has "coarctation of the aorta" (narrowing) and the cardiologist is going to attempt to balloon and dilate that.

We're praying & confident it wll go well. We hope to be home later today or tomorrow.Thank you SO much for continuing tolift up our family in prayer.

Friday, September 26, 2008

August 6, 2008

So, Seth is hanging out, weight wise, at 5.90 kilos (fluctuating between 5.91 and 5.88 or so.. today he was down on our scale.. just something else for me to stress out about!). Oh, that's about 13 lbs. (I almost forgot to add that!!). I'll try and get a pic posted soon (but don't hold your breath). He's SO sweet, his face is getting really round, he's got those "fluffy" Bonnett cheeks.. And his eyes.. oh, his sweet BIG eyes.. I was so sure they were going to be brown.. I know they are not going to be blue but I"m starting to think maybe green.. We'll see..

June 17, 2008

I was trying to come up with a clever heading for this and I just can't so I'm being boring and just sending out an update. Blah.

My sister is here from California. She was originally supposed to come for a week in May to help out. She came this week because my dad's wife planned a big bbq bash for his 60th birthday and a Father's day thing and Kari couldn't make two trips.

On the only positive self care note I can come up with (but it's a biggie), my Ob's office called in a Zoloft Rx for me. I'll pick it up (or have L pick it up) tomorrow. I have a counselors appt on Thursday of next week. Honestly I'm a freaking mess. I can't get anything done.. for many reasons but as much lack of focus as anything.. I did manage to do a few loads of laundry today (well two) but it was mostly because my kids are COMPLETELY out of clothes.

Seth is doing as well as can be expected. I think I already mentioned here that the ped. card. is very pleased with his progress and his weight gain. WE did take him in for a chest xray yesterday, only to be told he was fine.. I was worried about his breathing (which is always a little heavier than usual but seemed even more so yesterday).. So we can chalk that one up to mommy being paranoid.. (not that anyone minded). I worry about him all the time and can't even bring myself to think about August with out falling apart.. (and as I mentioned above, falling apart isn't all that unusual anyway)..

Okay, this has turned into a long stupid rambling post but I'm signing off now before it gets any worse..

Monday, September 22, 2008

May 24, 2008

As many of you know, we're HOME!! We've been home a week.

My PC is dead and I"m still figuring out my laptop..

We're doing well, the big kids (including Kayleigh) all adore Seth.. She wants to hold him all the time. He's a Sweet baby, very mellow unless he needs a diaper change, usually.We saw the pediatrician and the cardiologist this week. Seth is, as of Friday, up to 8 lbs and 21 1/2 inches. (Hee hee, at 8 weeks of age, he's still smaller than his brothers at birth!)

We are SO grateful for all the prayers and support we've received. I won't send regular updates but as we have changes, etc I'll try and keep you posted. If you feel so led, please continue to pray on feeding issues, Seth is currently on a g-tube, and we haven't been working with a bottle since we got home as we've just been settling in, but we'll pick it up..

If you 'd like to check him out, we had his pics taken before we were discharged from the hospital and he's now on the website.

The link:

Thank you so much for the blessing you have been in our lives! We are grateful that if we had to go through this, we at least got to do it with God, and the support of all of you!

May 11, 2008

Seth continues to do about the same.. but NOW about the same is AMAZING!! Yay, God!! Seth is healing well from his g-tube surgery, the nurses are gradually increasing his feeds to make sure he's still tolerating well.. We're still "nippling" with sterile water (bottle feeding) and Seth is still working on figuring out what to do with stuff in his mouth. Today he took 9ml from me.. not enough to sustain him (about 1/3 of an ounce) but it's good progress.

AND.. he WILL be home SOON!! The "buzz" on the floor is "as soon as Tuesday" (someone said Monday and I almost hyper-ventilated! ). We're excited.. and a wee bit nervous.. Sure glad we know who's ultimately in control (and it's not us!)..

Thank you for praying so faithfully for us. We will definitely update when Seth is home (if not sooner ).

May 9, 2008

Yay, more answered prayers!!

Seth had his g-tube put in on Friday afternoon and came back to his room BREATHING ON HIS OWN!! Woo hoo! (The nurses said it was because we had the BEST anesthiesiologist, I figure that God did it!) He's doing awesome, he spent most of Friday late afternoon, early evening, sleeping in mom & dad's laps.

They weighed him right before I left on Friday night and he's down to 6lbs 3oz (that's for those of you who have been specifically asking). (On a side note: a friend of mine had a baby on Tuesday and while Jack is shorter than Seth, they probably weigh about the same!). Within the next couple of days we can start using the g-tube for food and I"m confident we'll get Seth "bulked up" in NO time!

Thank you for all your prayers, I haven't recieved a date yet but I"m hopeful Seth will be home soon!!

May 8, 2008 - pm

Seth is doing terrific. He's really starting to figure out the swallowing thing (took 8, 7 & 10 mls today over his three sessions, go baby!) but he tires out before he can satisfy his nutritional requirements..

He IS having a g-tube placed tomorrow at noon. This is a relatively simple surgery but will require general anesthesia and the ventilator (we're just a teeny bit nervous about the vent.. but then we rememeber we are not in control! Yay God.) Please pray that he'll do well respiratorilly after surgery.

Other than that, we're about status quo!

May 8, 2008 - am

Seth is doing SO well!! The only issue remaining is eating.. We're working on it with Speech & occupational therapists but Seth is only taking millileters at a time (the best he's done so far in one feeding, about a half hour, is 8 ml, he gets 60 mls through his Ng tube every 3 hours). The drs have decided that he probably needs a feeding tube "long term", we'll still working on eating by mouth but his main nutrition will be through the tube. Due to that, Seth is getting a g-tube. This is a feeding tube surgically implanted directly into his stomach (the surgeon described it as a "gas cap" in his belly ). To prepare for that Seth will have an upper GI Study today (Thursday) and most likely the G-tube surgery will be tomorrow..

The surgery will require general anesthesia and so Seth will be placed back on a ventilator but we expect that to be VERY short lived! I"ll send an update tonight when I know what time surgery is tomorrow.

Thank you for your continued prayers for our sweet baby! Oh yeah, moving forward with this g-tube means that Seth will be home SOON! We don't have a date yet but I'm thinking sometime next week!! Yay!! I'll keep you posted.

May 6, 2008

Seth is doing AWESOME!! We are SO grateful for how far God has brought us and for all of you praying for us during this time!

Seth is still in the same room in Peds ICU BUT he's no longer considered an ICU baby! He's only under "cardiac care" which means that the pediatric ICU doctors aren't following him anymore, only the cardiologists! His meds seem to be stable (and are oral so we can bring him home on those) and are controlling the arrhythmia's we had been seeing.

The BIG remaining issue is feeding. He's currently on an Ng tube (tube that runs into his nose, down his throat, into his stomach) he's gradually being transferred over to "bolus feeds" (all at once) instead of the continuous feed he had been on. The GOOD news about that is he has actually woken up cranky and acting hungry when it was time for the next feed! Yay!! Speech therapy and occupational therapy come in to his room and work with him on sucking & swallowing from a bottle. The cardiologist said we'd give it about a week to see if he's going to pick up swallowing or if he'll need to come home with a g-tube (feeding tube directly into his stomach). We are confident that God can take care of this as well! Please keep praying (specifically regarding swallowing).

The boys (Sean & Cary) got to go see Seth on Sunday (Bloomsday) and that was fun too!

Thank you!

April 30, 2008

On to Seth! Today was an AWESOME day! When I went up today, Seth was off CPAP and on a nasal cannula. When I went up this evening, Seth was BREATHING ON HIS OWN! God is SO good to us. It's such an amazing sight! His sweet little face just has one teeny tube taped to it into his nose (his Ng -feeding - tube). The heart arrythmias are completely under control with the meds he's on. We tried giving him a bottle (of water, he's getting his nutrition through the Ng tube and IV) tonight, that didn't go so well but it's a start!

We're just SO blessed and thrilled to see how well our baby boy is doing! Thank you SO much for lifting him up in your prayers!!

April 29, 2008

Super quick update:

One big change, as of Tues eve, Seth had both chest tubes pulled. Yay!! Other than that, he's more or less the same, still on CPAP for breathing and doing well...

April 27, 2008

I haven't sent out daily updates because the days looked more or less the same.. The drs tweak Seth's meds, fiddle w/feedings, etc.. However, when I got to the hospital on Saturday, Seth was EXTUBATED! (again). He was on CPAP but as of our last report was doing GREAT so Yay!!! God is good and this is just another step forward for Seth! (Oh, and we DID get to hear him crying a little so looks like no vocal cord issues).

Specific prayer requests: For Seth to continue to do well respiratorilly, for feeding to not have "issues".. it would be wonderful to bring Seth home actually nursing (and the drs are skeptical about that and more inclined to think we'll bring him home on a feeding tube)..

God continues to bless us in so many ways, thanks to those of you whom He is using!!


April 23, 2008

Well, about the time I decide that I"m going to skip a day or two in updates, something happens that I just HAVE to share!

Seth is about the same tonight, still on the ventilator, he now has two chest tubes (one on the right, one on the left) to drain fluid he tends to accumulate in his chest.. He's been placed on antibiotics as a precautionary measure in case he has an infection (every now and then one of his tests will come back funky and they "worry" about infection and then it resolves)..

BUT the REALLY good news, the FINAL genetic test came back. Remember they did "karotyping" and that was 46xy (normal). This was a FISH test which looked specifically at ONE chromosone for a possible genetic disorder and it was NEGATIVE!! As far as the drs can see at this point, Seth is "genetically normal".. (and we had assumed that because he looks so good but it's nice to have it confirmed!).. YAY, God!!!

Okay, on THAT happy note,I"m off to bed!! Tomorrow's another day!

April 22, 2008

I spent some time at the hospital this afternoon, Leland was there this morning.. I called up a bit ago because they were doing a chest xray (Yes, Seth DOES glow in the dark! ) when I left and I wanted to know the results.. Seth NOW has a chest tube on the left side, as well as the one on the right they put in yesterday..

He's still on the vent and they're keeping him comfortable on sedatives..

The GOOD news for today is the doctors now seem to think his left diaphragm is NOT paralyzed, just very weak. With the ventilator breathing "for" him, and inflating his lungs, THAT will move the diaphragm and begin to strengthen it..

He IS getting better, just at HIS own pace!

Thank you for your continued prayers!

April 21, 2008 (for real)

I messed up yesterday's date.. I was just a teeny bit tired..

First, I want to say how blessed we continue to be.. God has continued to show Himself in the details, in some seemingly "little" things (that really are BIG things) such as putting people in my path JUST when I need someone to talk to. He continues to encourage and bless us using some of you for that as well so thank you for your faithfulness and listening to His voice.

As you know from yesterday's update, Seth is back on the ventilator. He also had a chest tube re-inserted today as he had fluid building up in his chest cavity again.. Leland and I took turns up at the hospital today..

Other than that, no major changes, the previously mentioned heart arrhythmia tends to pop up every now & then but seems to be better controlled by meds. And in the big picture, Seth does seem to be doing as well as would be expected.

My mom left today. The "big kids" are all doing well. Leland and I are hanging in there. Thank you for your continued prayers!

Sunday, September 21, 2008

April 21, 2008

I didn't send a Sat. update because Sat. looked a lot like Friday, just a good day.. Both Leland and I spent time at the hospital hanging out w/Seth, holding him, loving on him.. We decided to take ALl the "big kids" up to the hospital Sunday after church so the boys could see Seth again and Kayleigh could "meet" him..

This am, as we headed out the door for church, we got a phone call from the dr in peds ICU that Seth had some difficulty breathing and had been put back on CPAP. We decided to take the kids up anyway after church and had a brief "family" visit. Seth didn't look great to me as he had his head held way back in a position the nurses said they see in patients who are "air hungry".. And apparently he wasn' t doing very well as this afternoon he was re-intubated. The "theory" (or at least how *I* understood it from the doctors) is that he was just tired.. His "respiratory muscles" probably grew tired from working so hard, half of his diaphragm isn't working (due to the paralysis of the left side). His oxygen saturations were good but he wasn't "blowing off" the co2 well enough and his blood gases were poor..

At this point, the drs are figuring out the best step for getting nutrition into him, either an Nd tube (a tube that goes in through his nose and past his stomach) or a G-tube (directly into his stomach). The cardiologist said a "bigger baby" wouldnt have as difficult a time dealing w/the diaphragm stuff (oh, when Seth was last weighed, on Sat eve, he was an even 7lbs). Also, the heart arrythmia is still somewhat problematic and they're trying various meds to control that (we're on medicine #3..)

So, today was one of those "step backward" days the drs warned us about in Seth's recovery..

AND, my mom is leaving tomorrow (sniffle, sob..).

We're hanging in there, we certainly appreciate the prayers for Seth's healing and for his doctors wisdom. Thank you!

April 18, 2008

Pictures are inserted (above) And attached.

The top picture is from yesterday, when Seth was off vent, before CPAP. The bottom picture is from today.

And yes, Today was An AWESOME, we're singing God's praises day! That is me HOLDING Seth for the first time in 16 days!!

He had a GREAT day. He's off the vent and CPAP, on a nasal cannula. They pulled one of the chest tubes because it had slipped out of position anyway.. (May end up re-inserting it tomorrow).. The IV line in his umbilical cord area came out today. The drs are holding feeds to make sure he's doing okay with his breathing (he's getting IV nutrition). And, he goes to town on his pacifier!

We're praising God for the good work being done over here. AS much as he loves his "binky", I"m praying that we'll be able to breastfeed as I don't think latching on will be a problem!

And that's it for today, it was a gREAT day!!

April 17, 2008

The top picture is from yesterday, when Seth was off vent, before CPAP. The bottom picture is from today.

And yes, Today was An AWESOME, we're singing God's praises day! That is me HOLDING Seth for the first time in 16 days!!

He had a GREAT day. He's off the vent and CPAP, on a nasal cannula. They pulled one of the chest tubes because it had slipped out of position anyway.. (May end up re-inserting it tomorrow).. The IV line in his umbilical cord area came out today. The drs are holding feeds to make sure he's doing okay with his breathing (he's getting IV nutrition). And, he goes to town on his pacifier!

We're praising God for the good work being done over here. AS much as he loves his "binky", I"m praying that we'll be able to breastfeed as I don't think latching on will be a problem!

And that's it for today, it was a gREAT day!!

April 16, 2008

I know I said I wasn't going to send out daily updates BUT today was too good of a day to NOT share & praise God!!

As of 10:00 this am, Seth is OFF the ventilator!! Yippee!!! We didn't get to hold him as he was still having some minor difficulties and they put him on a nasal c-pap machine (big head gear type thing.. on the vent we could really only see above his nose well, now we've got a good view of his lips! ). He was holding his own on that, making little squeaky baby noises.. :)

Also, today, they discontinued the valium, the heart arrythmia is well-controlled w/the medication, and for pain, etc. he's ONLY getting tylenol!!

God is so good, it really feels like we've come a long way in the last two weeks. Yay!!

So there we go!.. MAYBE I won't pester you with an update tomorrow (and maybe I will )

Thank you for your prayers!

April 14, 2008

Yay, and Praise God! Today was a GOOD day... Seth was calm & mellow today (I'd give the valium the credit but I think the dose they were giving him is small enough that he really WAS just mellow!)..

The previously mentioned heart arrythmia is under control with medication. The drs are back to trying to wean Seth off the ventilator. Keep praying for those little lungs, once he's off the vent. we can hold him again!!

So we're staying the course! Thank you for all the prayers and support.

April 12, 2008

Oops, almost missed another one

Saturday was another "backwards step" day. Friday the cardiologist mentioned that Seth has a bit of an arrythmia (rapid heart beat). They were just keeping an eye on it. On Saturday, the arrythmia had been occurring more over the last 24 hour period and so Seth is now on a medication to treat that (and as of the last report Sat. night, I'm not sure the medication was helping all that much :( )

Also, Seth was extubated at 9:15 Sat. am. Unfortunately, by the time I got to the hospital at 11am, he was being re-intubated. He had VERY labored breathing and really struggled off the ventilator. The drs don't think it's heart function but rather a lung issue. I"m fuzzy on understanding (as I was reacting emotionallay and probably only heard half of what the dr said) but it seems to be considered to be a "small airway obstruction" possibly his lungs are slightly under-developed, etc. I"m going to try and get more details today or tomorrow on that and if we need to just wait out or what..

In addition to all that, Seth is having some withdrawal symptoms from all the pain meds & sedatives he's been on after surgery.. They've changed some meds to try and help with that..

Thank you for prayers. We just keep trusting that God is doing a mighty work here and His name will be glorified through all this.

April 11, 2008

Oops, got tired & distracted and forgot to send this out last night!

Friday was more of the same. They're getting a teeny bit more aggressive weaning Seth off the ventilator and the pediatric intensivist (PICU dr) said he'd get him off it by Saturday.. We'll see.

Seth has several different IV lines, PIC line, etc. He had a chest line but Friday it developed a crack right at the hub and was leaking all over so that got pulled Friday afternoon. So that's ONE thing out!

They changed antibiotics as a test came back showing what MIGHT be signs of infection...

And I think that's all our news! So, we continue in baby steps (which is appropriate really, if you think about it ) and we're moving Forward so at least we're making progress!!

April 10, 2008

Happy Birthday baby Brother!

I would probably not send this out today except that so many people tell me how much they appreciate getting them, I"m a little afraid I"d be deluged w/complaints if I missed a day!

Today actually looked much like yesterday.. The cardiologist came in and said "welll, your son will NOT be pushed." And the surgeon said he was going to move at his own pace, which appears to be: "Slow, slower, slowest". ha ha. Actually, they are trying to wean Seth off the ventilator TONIGHT but when I spoke to his nurse a few minutes ago, it didn't sound like it was going off w/out a hitch. I can update on THAT tomorrow!

THey have cut back on some ofhis meds quite a bit, he does seem to be experiencing some withdrawal symptoms from the various sedatives & pain killers he was on post op. Please pray for that to resolve quickly.

All in all, not a ton of new stuff.. The drs say he is getting better and we just stay the course. thank you!

April 9, 2008

It's so weird to think about the fact that tomorrow (the 10th) was Seth's due date! He's been through so much already for just turning 2 weeks old, sweet guy.

Today was an okay day. Seth got transfusions. The increased blood volume helps w/oxygen, etc. He looks pinker today. Also, he was getting sedated again.. He was a "little rowdy" and trying to pull out stuff, he has a "neighbor" now (little girl in the room next door, separated by a curtain) and when she cries it visibly upsets him.. All in all though, not doing badly, they were attempting weaning him off the ventilator (again, still!) and we'll see tomorrow how that went!

Leland went back to work today and I know that's hard for him so as you feel led, please lift him up in prayer!

God continues to shower us with blessings, big & small so we know how well we're being taken care of by our Creator!

April 8, 2008

Today was a harder day. The drs. said that Seth's recovery would look like "2 steps forward, 1 step back" and today felt like a backward day (to Seth's parents at least!).

Seth is still on the ventilator. He's waking up more today (and looking around, holding our fingers, etc) which is all good but still needing the vent to keep his oxygen sats where they need to be. The drs had to take him off the breastmilk. IT's a complicated medical explanation but basically the fat in breastmilk is moved through the lymph system to where it needs to be in the body and Seth's lymph system is just "leaking it out" into his chest, etc. This is not an entirely unexpected complication, and should resolve w/a change to formula. In the meantime, he's back on TPN (iv nutrition).

Actually, written out like that, it really doesn't sound like today was so bad after all! (I think mommy just had a hard day, I was feeling slightly unraveled today...). How good is God that in typing out this update I get to go to bed feeling encouraged again! Yay!

Thank you for praying for us.

April 7, 2008

God is so good, Seth just keeps getting better & better.. Not necessarily as fast as the drs think he should be getting better but fast enough to keep mommy & daddy encouraged!

Today Seth has been weaned off the paralytic and his sedative. He was trying to wake up for bits of time when we were at the hospital and spent a good deal of the day holding on to my finger! (Which is a HUGE blessing as he hasn't really moved for almost a week!). He tried to open his eyes a few times.. He's still on the ventilator but is stable and receiving breastmilk through his Ng tube. There has been question of an infection but so far he seems to be healthy (all things considered! ). The preliminary genetic testing has come back normal, more detailed testing is being run and could take a couple of weeks (we expect that all to be normal as well).

Please keep praying for his healing, for the drs wisdom. The boys were back to school today after spring break, we continue to be blessed by my mom's presence and help with the kids. We are experiencing some "interfamily tensions" (for lack of a better phrase and not feeling the need to go into details!) and would appreciate prayers for peace and good communication within our family.

Thank you ALL so much, we do not take your presence and your prayers for granted and are VERY grateful for you in our lives!!

April 6, 2008 - sternal closure

Today Seth went back into surgery to get his chest closed! Yay!!.. It hasn't been a day without it's ups & downs (of course). They were unsuccessful getting a 2nd PICC line into him last night (so today he looks like a pincushion, poor baby!) and so in surgery they had to leave in one of the chest lines (for meds, etc). They are weaning him off a few of his meds (with some expected reaction but that's being worked through). He's also being taken off the paralytic, and I believe they'll slowly start reducing his sedative.. The next big step is to get him off the ventilator and breathing on his own and they're going to start giving him breastmilk through his ng tube (that's been an answered prayer, the pumping is going marvelously!).

All in all, he's doing just what the doctors expect..(maybe at a teeny bit slower pace..).

We appreciate the visits and the prayers