This Friday the 13th...

wasn't scary at all.
In fact, it was a very pleasant day filled with plenty of good things! The best of those good things was the fact that Greyson's follow up, post-op appointment with the neurosurgeon went great! Everything looked good and the shunt is working properly and set to the correct setting. He'll have to go back in three weeks for a similar follow-up. This news sure made the other good things even better! and that other good thing happened to be my birthday!!! What, a birthday on friday the 13th, sounds like it's destined to be doomed! Quite the opposite. In fact it was a great birthday and I got to spend it with my little buddy which was by far my best gift. Although my new running shoes fit really well and look striking on me :)

Oh one tidbit about my Friday the 13th Birthday...

As I have in the past I like to make unusual request for a birthday treat at the office, this year was no different. After realizing my big day would indeed fall on a friday, i immediately thought, " I want A Friday the 13th horror flick themed cake with blood red frosting" So in my explanation I must have got my horror film movie stars mixed up and said i wanted freddy kruger on the cake...opps what i meant to say was Jason. yeah know, Jason the guy with the hockey mask. WEll anyway it was too late and the cake was made and sure enough I celebrated with a Friday the 13th Freddy Kruger cake. The mix-up made it even better than I imagined!

Ok enough about me... Leigh and I took grey out for a walk in his stroller today, and although it looked like it was 60 degrees and sunny, it was much, much colder than we expected. But Grey was bundled up in his Caribou/Elk/Reindeer/Moose jumpsuit that looks very warm. I wish i had one. So the walk was great, just cut a little bit shorter than we thought. Spring where are you? Come soon please!!

coming soon... some "outake" photos of Grey :)


love to you all

One Month Old!!!

Holy cow, our little Grey is already one month old!! I guess time really does fly!

This week we have had a few appointments. On Tuesday, we met with the plastic surgeon who helped with his back closure surgery. He was so pleased with how his back is healing, that we won't need to see him again! One less doctor to worry about! :)Today we met with Greyson's physical and occupational therapists. There was quite a bit of paperwork that needed to be filled out during this first appointment. While I was doing this with the occupational therapist, the physical therapist got busy checking out Greyson. She noticed (as have Andy and I) that both hips can move pretty well. She did recommend that we continue to do the stretches that we were taught while at the NICU to keep his leg muscles limber. I mentioned to her that his left leg and foot always wanted to curl under his right and she said that this is something that should be looked at by an orthopedic doctor. This is something that will be done in the near future. She also gave us a few other things to work on this week...Greyson seems much more comfortable turning his head to the left, so we need to work on getting him to turn his head more to the right, his arms and hands seem pretty tight so we are working on getting those a little more flexible. Other than that, she was really pleased with what he can do (he is only 4 weeks so it's kind of hard to determine what exactly that is). She said that he is making great eye contact and tracking objects really well. Andy and I are both really excited to start with Greyson's PT, we want to do all that we can to give him the best chance at walking some day.

Friday Grey goes into the neurosurgeon for a post-surgery checkup of his shunt. We pray its a quick in-and-out, everythings OK type appointment.

Anyway, it's been great having him home for a "normal" week. Were aren;t sure what normal is yet, but its feels a lot better these days :)

love Leigh, Andy, Grey

Grey's Home!

Well we got out little boy back home where he belongs!!! Friday afternoon the neurosurgeon reviewed that mornings CAT scan and gave him another once-over and it was determined that the shunt was doing what it was supposed to. His ventricles were down and his soft spot on his head was clearly "less-puffy" even we noticed that right away.

So here's a quick plug for the kind of care we received at the NICU for 11 days compared to a single night at the PICU...and really you can't compare the two...AT ALL! We may have been spoiled at the NICU, but Leigh and I just had an uneasy feeling while we stayed at the PICU. At no point did we feel like the Doctors or nurses really knew what they were doing...and yes, im sure they did and grey was in good hands, but to us, the parents, they didnt do a good job of assuring us that our boy was in good hands. So anyway, that afternoon Grey was discharged and we were headin' home once again!

It's funny though, this time coming home we both felt a little more uneasy. I guess now we have all these new things to look for in the case that the shunt is not working properly, and frankly thats kinda scary. I think it's scary enough not really knowing how to take care of a newborn, but then you have a giant list of other things thrown into the mix and it just escalated our fears about taking care of him. So pretty much the first time he cried we immediately thought "oh great the shunts not working." That first evening was not easy on either of us as we felt overwhelmed and we clearly saw that greyson was acting differently than we'd ever seen him before. But then we thought, wait, he just had brain surgery, I guess he might be a little uncomfortable and crabby. can't blame the little guy, i now if i had brain surgery i'd be begging for for a handful of vicodin.

This morning Grey seemed a lot more like himself. Eating better, crying less, and giving us his cute little grins. This made us feel a lot better. And so today, although gloomy outside, it was a great day for the Gibbs house.

We all look forward to having a "normal" week and get in our new swing-of-things. Sure that includes 3 Dr appointments, but we take it one appointment at a time.

love and peace.

Andy, Leigh, Greyson

A really long Day

So as we were driving to the hospital at 5:20 AM, we said to each other "Oh remember 3 weeks ago we were making this exact trip, at the same time." And both times we had that nervous/anxious feeling in the pit of our stomachs that just would;t go away.

Anyway we made our way to the hospital and really had no trouble getting around this time, we kinda know that place thru-and-thru at this point. We made it to the second floor and they did all the necessary measuring, poking/prodding of Greyson. He didn't really care for that, given he hadn't had a lick of food for 6 hours at that point. But he's a trooper and we were both surprised at how well he did provided his rumbling tummy. So off we went to the holding room where we discovered another trait about neurosurgeons...they are NEVER on time! It floored us that Greyson was scheduled at 7:30, the first surgery of the entire day, yet DR was thirty minutes late!! But what can you do, this is the guy's hands we were putting or babies life in...so we took deep breathes and held our baby boy tight.

So we finally handed him off to the anesthesiologist and watch him walk down the hall. A truly helpless feeling... A realization that as a parent you can't do anymore, you have to trust that God will guide this team of Doctors and nurses to "fix" your baby.

Waiting in a waiting room sucks in any situation, it's even suckier when you're constantly watching the clock and wondering when this thing is gonna be over, and when your continually praying to yourself that the doctor will walk in the room and proceed with these words: "It was flawless, your son did great, and everything will be better than you could have imagined!"

So it wasn't word for word what i was hoping he'd say, but the fact of the matter is Greyson did do great and his vital signs looked great, and there was no internal bleeding, and he was recovering calmly in the recovery room. And a giant exhale was had by all the family sitting with us.

After and hour or so, Leigh and I got to see our little guy... that was great and really hard at the same time. He was all hooked up, tubes all over, yellow iodine and dried blood all over his head. But it was are perfect little boy, sitting calmly with his eyes open looking at us. So, clearly as normal parents, we lost it. The nurses were very aware of Leigh's state and almost immediately ask if she wanted to hold him. Before they could finish asking, Leigh blurted "YES" So as Leigh was holding Grey I got a first look at his head and was somewhat surprised at how large the actual shunt device protrudes from his little head. But, at three weeks old, the little guys got some "growing in" to do of his shunt, and by the time he's rock'n his 1st birthday, his red mullet hairdo might just cover it up! hehe :)

The afternoon was pretty uneventful, although we could tell grey was in pain at times. We heard "crys" that just didn't sound right, its funny how the short time we had him home we were able to pick up so many of his habits and mannerisms. It was hard to see him struggling somewhat, but as each hour past, he became more comfortable.

So as we wrap up this day, we ask for prays that the shunt device is working properly and will continue to do what it needs to do to help Greyson develop like a good boy he's meant to be!

Your love and prayers rocked us good today, we felt them big time!!!

love,

Andy, Leigh, Grey

Quick update

We just wanted to give a quick update on our Grey. He's out of surgery and things went well! He is in recovery now and we should be able to see him soon. The surgery only lasted about an hour to an hour and a half and the neurosurgeon is happy with how everything went. Thank you so much for all of the thoughts and prayers! They were definitley felt this morning. We'll post more later!

Not exactly how i pictured my first hair cut.

That's what Grey would probably say, provided he could talk. Yup, the little guys head is gonna get "buzzed" but not really the buzz cut we had in mind. Tomorrow morning Greyson will go in for his shunt surgery and as scared as we were the other day, we seem to have it together this evening and are feeling strong. We have to be for Grey.

So a simple prayer tonight...May God's hands continue to hold Greyson as he undergoes his surgery. WE pray he's as tough as he was for his first surgery and will be home in time for the weekend.

A Big thanks to all for your encouraging words and prayers that last few days. Admittedly, we lost it for a while and were very discouraged by the news. it's like we took a few steps back in our faith that evening. It's funny how things always seem scarier in the evening, when your in bed and your mind races. But, time and time again things seem way more manageable when the sun comes up the next day. And, sure enough this morning was no different.

love,

Andy, Leigh, and Greyson

If Greyson can smile...

Then I guess we have to put on a smile. A smile was a hard thing to come by from both LEigh and I this evening as we found out the little guy indeed will need a shunt :( We knew it was coming, it was almost like we were just trying to squeak out another week, or two or a month... we were hanging onto anything. It seems pretty heavy and hard to bare right now, and although we say to ourselves "Really, one more thing God, you really think we can handle one more thing?" we trust we can make it through.

Oh yeah, I guess I should return to my previous post and remind myself that life includes detours...and guess what? the traffic is backed up and we have to go around somehow. And we will, we'll navigate through this one and reconnect with the road soon enough.

This surgery, which is scheduled for 7AM this thursday, is "a piece-of-cake" by comparison to his closure surgery a couple weeks ago. The kicker for us being we got to take this little guy home and discovered we loved him even more than when he was first born!!! So to see him go thru another surgery is obviously going to be very difficult for us.

So with surgery come risks of scary things, things the neurosurgeon "roboticly" spewed at us. I just have a feeling most neurosurgeons just aren't the life of the party, or someone you'd particularly want to have a bite to eat with. (any neurosurgeons reading this, I apologize...keep being brilliant and helping babies like ours) We pray our surgeon again is at his best, and nails the procedure! So as scared as we are now, we've already been reminded that we are not alone, and we find comfort in this. Thank you to all, we love you and really need you these days.

On a lighter note... after coming home from work I needed to hold my boy badly. Leigh had just finished feeding him so i snatched him up, and layed on the couch with him on my chest. It was great...until I heard i rumbling in his throat. I tried to move, but it was too late, he spit up big time, right down my shirt!!! yep, I'm officially a dad. :)

love to all,

the Gibbs'

Prayers for Monday

Today Great Grandma Gibbs was finally able to meet her first great grandson, and she was as excited as any 95 year old women I'd ever seen! She kept saying "There's nothing softer." as she rubbed his face and little hands. It was a very special moment to have her hold Greyson, and to be honest a couple years ago we thought the chances of her seeing a great-grandchild was pretty far-fetched. But shes surprised a lot of people and is doing well these days!

Another busy day spent with family and friends. At times its been exhausting, but exhausted is our new reality at this moment. The quicker we except it and don't fight it the better we will adapt to it.

One large prayer request for Greyson on Monday, hes got his head ultrasound in the morning and then a trip to the neurosurgeon to evaluate the results. We have been having such a great week with grey that we are really not looking forward to this appointment. So we pray that Greyson might dodge the bullet and his ventricles will not have not increased, thus no shunt this week. But if he does need it we pray we can approach it with calming peace and understanding. So send em' our way this evening and tomorrow. We'll let you all know the outcome tomorrow evening.
I had a better photo day today, so here's a few new pics.

love,

leigh, andy, grey

The good little church boy.

So this evening we thought we'd give going to church with a small baby a shot and got ready for the 5:30 service at Ada Bible Church. We gave ourselves plenty of time to get ready and made sure the little guy had a belly full of food so he'd be happy, and off we went. My whole life it just drives me crazy when i hear a baby crying in church, and then hear the parent "shhhh...shhhhing" them as if they will really listen!!! Just take the baby out!! I'd yell to myself, feeling my temperature rising!! And so now I enter into that category of my life, the parent that bravely enters the sanctuary, child in hand, and with one mission...keep this little guy quite throughout the entire service. Sure I guess it be OK if he belted out a few crys during the opening worship songs, but i was banking on him being zonked out the entire service.

And so we found a seat, near the back, at the end of the aisle, easily accessible was the exit just in case. Trust me, I wasn't gonna be that guy with the baby crying his head off, and just sitting in my seat thinking he'd shut up eventually. I thought this one through. hehe.

Let me just say that when we finally settled in and sat down, Leigh holding greyson, me sipping on that wonderful church provided coffee, it was like the Gibbs family came full circle. Let me explain...
Last september, when we found out our little guy had SB it pretty much knocked me down to nothing. This was hurt I had never experienced before, and hurt I wont ever forget. But that September at Ada Bible was a series that spoke directly to Leigh and I, to the point that we thought our life was being "bugged" and used as an example every week during the teaching. The teacher spoke of "Detours" and how these were not simply found on our Michigan roadways (Michigan roads are horrible) but also show up in real life. A perfect example would be Leigh and I's situation with greyson. We're driving along going a little over the speed limit in my 88 caprice classic and then we want to start a family and Leigh becomes pregnant, and we keep going on the road all is good, life is amazing, and then we get to 131 Northbound and find out our little guy has something called spina bifida and it will Permanently effect him for the rest of his life... This is OUR DETOUR. So we reroute and find our way around...months and months of worrying, wondering, praying, crying, researching, crying, regrouping, and finally discovering hope, peace, comfort.
So this is how we have approached our Detour in life... WE've been re-routed, our plan has changed significantly, but our ultimate destination remains the same. WE still need to raise this little guy to be the strongest, smartest, kindest, most self-suffient man we can. So the goal, or destination hasn't changed, just how we get there.

So sitting in church holding our little greyson, (we'll maybe at that time we weren;t holding him, he is a popular boy these days) we were reminded of the Detour we were on and how it seems by just having greyson here with us we;ve in someway got back on the road headed north and are crusing with the windows down again. At least for a short while, we know other detours are ahead of us but we feel we've found our way again. oh and Greyson didn't make a peep in church, much to the delight of his old man. :)

love to all,

the Gibbs Crew.

PS sorry no pictures this time. I wasn't please with how todays shot turned out, its was the lighting or something. hehehe :)

We can't get enough

So there's nothing really new to report today, but i spent a good chunk of the day taking pictures of the little guy and just want to post a couple new ones. It's so much easier to snap a shot without him being hooked up to a monitor. IT's so great to have him home!

enjoy,


love andy, leigh, & grey

Out on the town!

So it's been a few days at home with our little guy and things have been going quite well. Any sort of scheduling has been thrown out the window, in fact we had an appointment at 9 this morning, but realized that would be tricky to make happen so re-scheduled for the afternoon :) We have to add some "cushion" time in to anything we do at this point, because we are trying to figure out how long things take with a little guy. It's been much easier because its been both Leigh and I tag teaming to figure things out this week. The real test will be next week when i head back to work and leave Leigh to fend for herself. But from what I've observed, she's a natural at this mom thing and will have no problem at all.

This week has been great, we've had visitors every day, and even better every time someones come to say hi to greyson, they've also brought us food! It's been wonderful not having to think about making a meal and such. thank you to all!

So greyson has hit the town on a few occasions this week. His latest venture was to his pediatrician appointment this afternoon. The little guy did pretty good considering he had to take all his nice warm clothes off and be poked and prodded. And according to the Doc he's doing well falling right into the middle percentile with pretty much everything. His back continues to look better everyday and sure enough, he keeps getting cuter every day.

This has definitely been different than any other "vacation" i've taken off of work. But honestly have to say its been one of the best. Lounging on the couch, catching up on spring training baseball, dozing off, me and grey are getting really good at all these things! :)

So today is his 2 week birthday. It's funny how he's changed just in 2 weeks. I look at him and the pictures i took on day 1 and think "wow, this little guys getting big" I guess thats what 9 oz does to beef up a little guy.

So we just wanted to drop an update and let everyone know that we are hangin in there and fully embracing parenting. We just ask for continued prayers for greyson as he has his follow up ultrasound monday to see if his ventricles have increased. We will keep you all posted as to the outcome and how the next week will unfold.

love

andy.leigh,grey

HOME!!!! part two

So yes, somehow i've taken over the role as head blogger of the family, something i would have never guessed i'd be involved with months ago, but here I am, and its actually been quite helpful as we've gone on this journey. So anyway, yesterday was quite a ride for us hearing the news that we could actually take our G-man home!! This was a complete surprise to us, we were preparing for a tuesday surgery, pysching ourselves up to deal with the Dr telling us "Yes, his ventricles have increased, and yes, he will need the shunt surgery tuesday" But, "No" instead he said there was no change, and that he'll be checked in a week. We were somewhat torn. Was this just delaying the inevitable or was this an answer to our prayers the previous night? We've learned to hang on to even the slighest bit of hope these past months and this is no different. Remember the previous post when i said i was fed up with the hospital and had to get out!!! Well guess what, next day and we're outta there! And yes, i know the statistics and yes he probably will need a shunt, but for this week we've got our little guy where we want him, at home!!!

So when the doctor finally gave him the official OK to leave it was beyond surreal. After saying goodbye to our two favorite nurses we had to ask a few times "so we can just leave?" "Do we have to scan him or something?" But no, he was ours and off we went. Walking out of the hospital we just really didn't think it was real, he was gonna come home. After pulling the car up front we securely fastened him in, I tugged on that latch plenty of times and made sure he wasn't going anywhere. And so he was in and we were off to make the 10 minute journey home. Leigh sat in the back as to "protect" him from anything the car seat couldn't. I'm wondering how long she'll sit in the back there with him. hahaha. It was like i was back taking my drivers ed test, hands at 10 and 2, yielding, cautiously proceeding at intersections. I was beyond cautious. This i'm sure is the mindset of every mother or father driving there child home for the first time ever. :)

So we made it home and after a tour of his new digs Leigh and I had a moment of "Ok, now what?" "I dont know, we could put him in his pj's?" "Ok, sure lets do that"
So we bundled him up and I did the only thing I thought was right at the time. I placed him on his side on the floor and put my face 1 inch from his and just looked at him. His little hands would occasional touch my face...my heart melted even more. :)

The first night went well I think, It's not like i have anything to compare it too, but he got up at 1 and 5 AM and Leigh and I tag teamed, changed, fed, cleaned, rocked, and back to bed. His noise machine is amazing, its like a babbling brook is running right through our bedroom. hahaha. So today has been pretty chill, adjust to life with our new little roommate. Trying to figure out what we needs, when he needs it and how much he needs. So we continue to pray for the health of this little guy and pray that he will continue to bless our family as he already has so much.

Love,

the Gibbs'

HOME!!!

Andy is typically the blogger of the family, but I just couldn't wait to share this news!! Our G man is finally coming home! I just talked with his neurosurgeon and he has escaped a shunt for this week! Most likely he will still need one at some point, but not tomorrow! We will continue to have weekly head ultrasounds to check him out. I'm sure that andy will post a much more entertaing post soon, I just wanted to share our great news!

Love to all
Leigh Grey and Andy

One things for sure...

the little man's hair appears to have a reddish hue to it. And if anyone has seen my "beard" before you'll know he gets it from his old man. So we'll see if this auburn shade sticks with him and if so we'll stock up the SPF 100 for our fair-skinned little dude. Anyway, this Sunday was a fairly busy day with visitors and such. It appears his loyal fan base is local and he has several guests everyday to admire him. Today, however was the first day where I felt really "trapped" in our space on the third floor. All 8 of Greyson's roomates parents were in to visit and it just made things cramped and gave me an uneasy feeling. Leigh and I are both so ready to leave and make Grey comfortable in his own room. But we learn patience, and know when we finally get to take him home it'll be even more meaningful.

It seems like Grey's been making some friends here among the nurses as well, we've just heard that three nurses have requested to care for him on monday and tuesday. Either they really love this little guy or they are just interested in an easy work day because he's the easiest to care for in the room. Either way, he's pretty popular. :)

So tomorrow he'll have his tests and we'll know for sure about the shunt surgery. It seems likely he will indeed have it. Man, it'll be hard to see him go thru another surgery. But we are pretty confident this little one has the right attitude going in, he'll be cool, calm and relaxed. That's just how he rolls!

love to all,

Leigh, Andy, Greyson

The Weekend at the NICU

So Leigh and I have determined that the hospital is getting a little old, Sure we know exactly where to park, what hours the cafeteria are open, and how to get up to the third floor the quickest. But we are ready to take greyson home!!! But we go one day at a time and enjoy ever second we get to hang with our little buddy! And lately things have been pretty exciting!!! Yesterday marked the first day that Greyson didn't have to be on his belly! And basically they Ok'd him to be in any position he's comfortable with. WE still are leaning on the side of precaution and not setting him on his back for too long, it's just a little scary. But the Docs say he's fine and his attitude wouldn't prove anything different. He's very content. So now that he's up off his belly he we can hold him!!! Yes an amazing feeling that we've been not so patiently waiting for, for over a week! Yesterday afternoon Leigh was able to hold Grey for the first time like a little baby should be held. Obviously the love for our little guy was overwhelming as she held him. I'm pretty sure she didnt let go or share him with anyone else for 4-5 hours. I don't blame her! After some convincing I was able to peal greyson away from Leigh so that i could hold my buddy. Wow, finally. It was incredible!

This morning as we walked in, Greyson had what looked like earmuffs on, but earmuffs that were from Star wars or something. Turns out he was having his hearing screening done...and he passed. So that cools, the little guy can hear. IT must be from when i set my ipod next to his head those first couple days. Gotta get him started early on learning what good music is all about! :)

Today has been great, We've held him, washed him, squeezed him, and pretty much gaze at him and are perfectly happy. I loose track of time because im so focused on him. So he hope to just enjoy the rest of the weekend hangin with our new best friend. We know what Monday/Tuesday will hold and dont want to get caught up on that. Monday he'll have another head ultrasound and his shunt surgery is in the books tentatively for tuesday. So all please continue to pray for Greyson has he's gonna have to put his game face on again and get tough for another surgery. We pray that the Surgeon will perform his finest surgery and that all will go smoothly. WE love this little guy soooo much and its clear he's loved by so many others just from those following his journey on our blog. Thank you all, it touches us deeply that people that have never met us or greyson can be so connected in the effort to love and bring this boy home as soon as possible.

love to all of you out there,

Leigh,Andy,Grey


enjoy the pics...i've got hundreds more :) hehehe

Not this weekend :(

Well, it looks like the little one will be hanging out at the NICU this weekend. We had just a slight bit of hope when a doctor said we might be able to take him home this weekend, but they will keep him over the weekend because it looks like he'll have his shunt surgery on Monday or Tuesday. Probably more like Tuesday. It was tough for Leigh and I just because earlier this morning Leigh was surprised by the fact that a doctor said he might come home Friday, it would almost be better if they didn't say that unless they were for certain, ya know?

Anyway, Greyson's doing well and he'll be able to get up off his belly tomorrow. Finally a change of scenery for the little man. Gotta be kinda sick of lounging on his belly for a week. Although I think I'd be content with eating, sleeping and lounging on my belly all week. Tomorrow also marks the day that We can hold him! I'm not sure if it will be full-on "hold a little baby" holding, but nevertheless we can hold Greyson without having him lying flat on a pillow.

Today also marked the day Leigh nursed Grey for the first time. An interesting predicament when he has to remain feet higher than his head and belly-down. But the incredible nurses here got creative and it worked out better than expected!

So we prepare for another surgery...wait didn't we already do this? Yeah it'll be tough, maybe even tougher than his first becasue we've gotten to know our sweet baby and love him more than we thought we ever could. We hate that he will have to go through this once again, but know that it is what is best for him. As always, we put him in God's hands and know that He is in complete control. Please say a prayer for our little guy and for us, as we know that it will be a difficult few days but hopefully our family will be home within the week!

love to you all,
Leigh, Andy, and baby Grey