Pictures

 Just before surgery - May 3, 2012

 Just after surgery, still in recovery. I was really surprised at this point by how good he looked.  

 End of the day of surgery - starting to swell a little.  I don't think he liked the lights in the PICU - he kept putting his blanket over his face.

 After they took off his head dressing, morning after surgery.  Eyes had swollen shut overnight.

 Another view, more of the top of his head.

~We didn't take any more pictures for the rest of this day and through the morning of the next.  The swelling did get worse and he was visibly more uncomfortable.  I don't like reliving those 24 hours or so and I'm glad there are no pictures to look back on~

 Saturday afternoon - 2 days after surgery - one eye just about open!

 First eye open!

 Still Saturday afternoon - first grin!  This was when we knew we had our Collin back - he was smiling and playing patty cake.  He was visibly improving every hour after this point.

 Around midnight on Saturday/Sunday.  Both eyes open!  Time to move up to a room!

 Sunday afternoon in the regular room - first time I'd gotten to hold him in 3+ days - what a blessing for both of us!

 Collin was so excited just to be able to look outside

 Overnight Sunday night - last night in the hospital

 Monday morning before going home

 Ready to go! 

 Tuesday, May 8 - 5 days after surgery

 Wednesday May 9, 6 days after surgery

 Thursday, May 10 - 1 week after surgery!  Had to take a little ride to get out of the house.  All of us were going stir-crazy at this point.

 Friday, May 11

 Happy Birthday Collin!  Saturday May 12 Collin turned 1!  So glad we didn't have to celebrate in the hospital!

 Good view of the surgical tape still covering his incision.  

 Collin loved his Cozy Coupe!

 Eating breakfast with Daddy and Max

 Saturday, May 19 - surgical tape finally came off and we were able to really clean his head.  Hard to keep him still enough to take a pic so this is the best I got!

 Favorite pose...chillin' in his red chair

 Sunday, May 27, 3.5 weeks past surgery

 Saturday June 2 - 1 month past surgery and time for some fun at the park!

 So weird to see this side of his head without the little red hematoma he was born with.  It was so close to the incision line that Dr Kelly thought it was best to take it off.  

Some fun in the sun with cousins!

Now for a side by side before and after... I can tell his eye shape is a little different and his forehead is definitely larger and more rounded.  Will be interesting to see how much more he changes in the next few months.

Hospital Experiences & At Home Tips

Hospital Experiences & Advice (Specifically for Vanderbilt but could be helpful otherwise) – sorry these are in no particular order, I’m just typing as I think of them:

• Yoga Mats – at the last minute we decided to throw our thick foam yoga mats in the car and we are sooooo glad we did.  In the PICU we had to sleep on sleep chairs and that extra layer of cushion was wonderful
• Surgery lasted around 3.5 hours, plus another hour while they got him set up in recovery before we could see him.
• I expected the first time we saw him after surgery to be that shocking “what have they done to my baby?” feeling, but he really looked very much like himself at that point.  His eyes were still open, face about the same size/shape as normal and he had a gauze helmet on. 
• Our time in recovery was apparently longer than typical only because they had wait for a bed to open up in the PICU.  We were in recovery for around 3 hours before we moved up to the PICU.
• At Vanderbilt in the PICU there are three pods and each pod has something like 12 rooms.  You don’t get a choice in the pods, but keep your fingers crossed for the yellow pod…it is the only one that has restrooms inside the room.
• The nurses in the PICU are assigned 2 rooms each and are on 12 hour shifts.  There is a window between the two rooms where the nurse sits and can see into each room.  We were led to believe that we wouldn’t be involved in his care at all while we were in the PICU – that the nurses would handle all feeding, diaper changes, etc.  That wasn’t the case for us.  If you read through my post from when we were in the hospital, you’ll see that sometimes we were kind of on our own.  We didn’t mind doing any of that, we just had no idea what we were allowed to do and what we would always be responsible for.  Since Collin was in a carseat and hooked up to all kinds of IVs and monitors, it was difficult to change his diaper.  One person couldn’t do it alone.  If a nurse wasn’t available we had to do it but we tried to always wait for the nurse because it was scary to pick him up out of the seat and try to avoid making any alarms go off.  I would recommend having a very honest conversation with each nurse at the beginning of their shift to make sure your expectations match with theirs.  You can’t ask too many questions. 
• You can have food in the PICU rooms – they just want you to keep it behind the hospital bed in the family area.
• There is a good size closet that can hold your bags.  The nurses really do not come into the back of the room at all so that whole area is for you.
• Only 3 people can be back in the PICU room at one time.  Every time anyone comes in and out they have to buzz the desk and tell which patient they are coming to see and they will check to make sure there aren’t too many in the room.
• Overnights…this can be the hard part…only 2 adults are allowed to stay between 9pm and 7am (and it must be the same 2 adults all night).  There is one sleep chair per room.  There is also a very uncomfortable rocking chair in each room.  They have 12 sleep rooms which are basically hotel rooms.  You tell the person at the reception desk if you want to be on the list for a sleep room.  If you get a sleep room your nurse will let you know by 9pm each night (the sleep rooms are only available 9pm-7am).  The sleep rooms are given out in a specific order…those families with the most critical patients first, then it’s based on how far away you live, then it’s first come first served.  We were in the PICU 3 nights and never got a room.  We were finally told on the last night that based on where we live (40 minutes away) we were 18^th on the waiting list, and that’s after the 12 rooms were full.  So we never had a chance.  Not complaining about that at all because there were certainly families who needed a room more than us.  We just wished that we understood it better so we could have planned better and not hoped for a room each night.  There is a community sleep room that has 8 sleep chairs.  The TV goes off at 9pm and some of the lights are turned off, but it is still very bright in the room.  There is no privacy at all.  If you sleep there you could be sleeping within a couple of feet of strangers.  Of course everyone is there for the same reason and there were never any problems, but it took a little getting used to.  Also neither of us snore so we aren’t used to trying to sleep through someone else snoring.  We both have a white noise app on our phones so we took headphones and turned on the white noise.  My husband would go to the community room at 9pm and I would stay with Collin then switch out with him around 1am.  It worked OK, but definitely wasn’t the most comfortable.  Looking back we would have reserved a hotel room close by.  We actually did that our last night when we had moved up to the regular floor because we needed to get some good solid hours of sleep.
• Speaking of white noise – we have a sound machine that Collin uses for naps at his sitter’s house and it was wonderful to have both in the PICU and on the regular floor.  There are so many noises outside your room that it’s hard to get any rest.  The sound machine blocked out a lot of it.  The nurses didn’t mind us having it as loud as we wanted it.
• We had a few of Collin’s favorite toys but he wasn’t really interested in playing as long as his eyes were closed.  He does have a taggy blanket that he enjoyed fiddling with but there wasn’t much we could do to occupy his time.  Once one of his eyes opened we brought in pictures of him and his brother before surgery and he enjoyed looking at those.
• Sitting in that carseat 24/7 made him so hot.  Collin has always been a cold-natured child but he would overheat very easily in the PICU.  He would fuss so we thought he was cold and put a blanket on him, then his fever would spike because he got too hot.  Especially the first 24 hours when the gauze was still wrapped around his head and holding in the heat we had to make sure he didn’t have any blankets or toys covering him to make him hotter. 
• While in PICU they gave him morphine and Tylenol with codeine around the clock.  He stayed pretty out of it most of the time but it was easy to see when the medicine had worn off and he was starting to feel the pain.
• We were in the PICU for 3 days and a regular room for 1 day.  We had been told 6-7 days total in the hospital so we were shocked when we were told first thing on the 4^th day that we would be going home.  More below about being at home…
• All of the pictures and talking to other families who have gone through it can’t prepare you for how hard the first 30-40 hours will be.  You feel completely helpless watching your little one swell and swell until his eyes close.  You know he is in pain because you constantly watch his heart rate rise on the monitor.  Your nurse may be tied up with another, more critical, patient when it’s time for your child’s pain medicine and he may have to wait an extra 30 minutes or so.  He may or may not want to eat – Collin ate great until his eyes swelled shut then wouldn’t take an ounce of liquid for over 24 hours.  For a child who normally drank 30+ oz of formula a day plus solid food that was hard for us to handle.  You get very little sleep, and what sleep you do get is interrupted and restless.  BUT…you get through it.  Once the swelling hits its peak, every hour after that you will see improvement.  The nurses will take out the drain from his incision and begin to remove some of the lines he is connected to.  Once his eyes are open and the drain is out you will move up to a regular room and finally be able to hold him.  There is no better feeling than holding your child for the first time after an ordeal like that. 
• I don’t have a lot of advice about the regular room because we were there only about 18 hours.  We were able to get him out of the carseat and clean him off (you can’t imagine how gross he was after surgery then being stuck in a carseat for 3 days…).  He was able to sit up in his bed and play or eat.  He was still pretty groggy and had trouble holding his head up for long periods of time.  They didn’t give him morphine on the floor but he still got the Tylenol/codeine regularly. 
• If you aren’t familiar with the Vanderbilt area, there are tons of restaurants close by.  The food court in the children’s hospital has a decent selection – the food court in the main hospital is better but more crowded.  There is also an Au Bon Pain (kind of like a Panera) on the hospital grounds.  Right across the street from the hospital is Pizza Perfect (delish pizza and subs!) and a kabob place.  The kabobs are pretty fantastic too.  A few blocks down is Hillsboro Village and quite a few restaurants to choose from there. 

Once you go home:

• In some ways this was scarier than the hospital stay for us.  The first week or so we literally had to be within arms reach at all times.  If he was standing (he had just begun to take a couple of steps prior to the surgery), we had to have a hand on him.  We learned right away that he needed a pillow behind him if he was sitting up because he would fall backwards very easily, at least for the first week.  Dr Kelly told us the biggest concern would be hitting the sides or top of his head – the back should be pretty safe. 
• They sent us home with a prescription for the Tylenol/codeine but told us only to give it to him if regular Tylenol didn’t work.  I think we may have given him a couple of doses at first, then regular Tylenol for a few days.  After that he didn’t need anything.  He also had an antibiotic to take for I think 10 days after we got home.
• There was surgical tape over his incision for a little over two weeks.  Some of the pieces fell off (and he pulled some off) but Dr Kelly told us we were allowed to take it off around 15 days after surgery.  Once the tape came off and we could clean some of the dried blood he looked so much better.  He is still swollen almost 5 weeks later, but I think most of that is gone.  It is so weird to see him with a different forehead than he had before.  He looks a lot more like his older brother now.  I can’t wait to see what he looks like when his hair is all grown out and all the swelling is gone.
• After the first full week home we were able to relax a little bit and not stay so on top of him.  And by relax I mean instead of being within arms reach we were like 5 feet away…we still never left him in a room by himself unless he was sleeping or strapped into his high chair. 
• We were told he could go back to daycare 2 weeks after surgery if we felt comfortable but we didn’t.  He only went back last Tuesday, which was almost 4 weeks after surgery. 
• The biggest change for us at home is that he can’t sleep on his belly.  Dr Kelly said he needs to be on his back for 6-8 weeks after surgery.  Since Collin is a belly sleeper, he told us to put him in his carseat to sleep.  We did that for the first few nights but quickly realized it would be challenging to take the carseat out and put it back in every time we needed to go somewhere.  A friend of mine let me borrow her Nap Nanny.  Not sure if you’ve ever heard of them, but they are intended for infants.  It has worked perfectly for what we need.  He is comfortable in it and only has a strap across his lap instead of the 5 point harness from his carseat.  He is around 26 lbs and still has room to move around in it.  It will be interesting to see if he can go back to sleeping normally after being strapped in for so long!
• After 2-4 weeks of constant one-on-one attention, you can expect your little one to be pretty fussy when he goes back to daycare or to a more normal schedule.  Our sitter told us Collin cried a lot the first couple of days but he got used to it fairly quickly.  We don’t think he was in pain or anything…we just think he was used to being the center of attention and with a few other children at his daycare he wasn’t anymore. 
• Edited 6/8 - I just remembered something else.  Be sure you have enough clothing that either snap or button or have a wide neck.  We probably ruined some by stretching them out but it's not easy to pull regular clothes over the head with all the swelling.
• We’re almost 5 weeks post surgery and he is healing so well.  Truthfully if you didn’t see his incision and didn’t know he had surgery you wouldn’t suspect anything.  He is eating great, playing hard and sleeping well (other than the normal problems with teething!). 

That’s all I can think of for now.  Please feel free to email me (jhgreer@me.com) if you can think of anything I didn’t cover.  I hope some of my ramblings will help better prepare you for what is to come!

Surgery Timeline & Posts (LONG)

I'll copy these chronologically so it is easier to understand:

Friday, March 23, 2012:
So I realize it has been almost a year since I blogged last.  Now that pretty much everybody is on facebook or has access to it I have become seriously slack with my updates.  Also with work and the boys and life everything has just been so busy.

I really want to document the next few months of Collin's surgery so what better place to do it?  For those of you who do not know, Collin has been diagnosed with Craniosynostosis (explanation coming soon).  Here is the story so far:

Matt took Collin to his 4 month checkup with our Pediatrician.  Dr Shepherd spent some time looking at Collin's head and mentioned that he wanted to watch it because it seemed shaped a little funny.  Without knowing anything about it, we assumed he was talking strictly cosmetic and maybe would involve a helmet.  I pretty much dismissed it all together, thinking as most moms do, my little boy is perfect and doesn't need a helmet to make him look better!  At Collin's 6 month appointment, we asked Dr Shepherd about his head and he told us he thought everything was fine but we would continue to watch.  Finally at his 9 month appointment, Dr Shepherd spent a lot of time again examining the shape of Collin's head and asking us questions about speech and motor skills (more than usual).  He again said he thought everything was fine.  The next day he called us to say that he had gotten home the night before and started worrying about Collin and wouldn't feel right until we had some tests run and we saw a pediatric plastic surgeon to rule out any problems.  Still at this point we believe this is either a) nothing at all to be concerned about or b) something cosmetic that we weren't really keen on fixing as long as it didn't cause any long term problems.

Fast forward a couple of weeks to Collins CT scan.  It was done at Vanderbilt Children's Hospital and he had to be sedated.  Luckily there was no IV, he just had to drink a sedative that took about 20 minutes to take effect.  Then we got to be with him the entire time he was being scanned.  The scan took about 5 minutes and he woke up as soon as it was over.  We had to wait about half an hour for observation before they sent us home.  The nurses told us when we left that we would hear something from one of the doctors in 24-48 hours. I didn't think we would because we already had an appointment with the plastic surgeon the following week.

The next Wednesday we had an appointment with Dr Kelly, pediatric plastic surgeon at Vanderbilt.  I really had no expectations of this appointment, other than at the very worst he would tell us Collin would need a helmet.  Even that I thought was a long shot because, again, my baby is perfect the way he is, right?  When we got checked into the room to wait for the doctor, we noticed the nurse had left Collin's CT scan up on the screen.  We snapped a picture of it because we thought it was kind of cool.  Matt told me later that he knew as soon as he saw the scan that something was wrong.  I still had no idea at all.  Here is the picture we took of the scan.  Sorry if this is disturbing...if so, you probably don't want to check back in the coming months because there could be more disturbing pictures after surgery.

So Dr Kelly came in and looked at Collin's head for about a second and then started talking about surgery in 6-8 weeks.  We were more than a little in shock, and didn't hear much of what he said after that point.  I never even heard him say the name of the surgery or Collin's condition, but I'm sure he did.  He rambled off about a million stats and facts and instructions, none of which sunk in at all.  I just kept looking at Collin then at Matt and it was a struggle just to keep it together.  Finally he told us we would see the scheduling nurse and get everything set up.  In a daze, we went back to the waiting room.  I called my mom to tell her what was going on, tried to get through it without losing it, and failed miserably.  Matt took Collin home and I waited for the scheduling nurse.  When I met with her, we set the date for May 3 (we wanted sooner but this was the first available they had).  She also showed me some pictures that other families sent in before, during recovery, and after.  While it was hard to see some of them, it also really helped me process more of what is about to happen.  I left still upset, but much more calm.

So, after some research and emails with the scheduling nurse, we now know that Collin has Metopic Craniosynostosis.  Basically the Metopic Suture, the space between the two bones that form Collin's forehead, fused early.  It most likely happened before he was born, but there is really no way to know.  Nobody really knows why it happens, but some stats say that it happens to 1 out of 250 babies in the US, with 1 out of 4000 needing surgery.  If you look back up at the picture of Collin's skull, you can see that the sutures on the sides are still open while the one on the front is completely closed.  Dr Kelley explained to us that if we do nothing, the rest of his head will continue to grow as normally and his forehead will remain the size it is now.  We can already tell that the front of his head is much more narrow than the back (pic below).  Dr Kelley believes that brain growth has not been negatively affected up to this point, but it is only a matter of time before that starts to happen.

I'm not sure of all of the details about the surgery, but I know they will separate the bones and reconstruct his forehead to allow his head and brain to grow normally.  The surgery will be performed by a pediatric neurosurgeon and plastic surgeon and will take around 4 hours.  He will be in the ICU for up to 3 days and will be sedated most of that time - they will wake him enough to eat but other than that will keep him sedated for pain management and to keep him still. We will be able to stay with him in the room in the ICU (something special for Vandy from what I've seen about other hospitals). From the pictures I've seen, immediately after surgery he will look almost completely normal but will then begin to swell.  Most likely his eyes will be swollen shut.  After ICU we will be in a regular room for 4 or so more days.  Some people I have read about or talked to have said they were able to go home on the 4th day.  I believe that depends mostly on when the swelling goes down enough for him to open his eyes.  I hope the estimate of 1 week in the hospital is worst-case scenario, but we are prepared for that or longer.  Dr Kelley told us that he will need to be home (not in daycare) for 4 weeks after the surgery and will be fragile for up to 12 weeks...not so fragile that he can't walk and play as normal, but we will need to pay closer attention to him to make sure he doesn't fall on his head or run into anything (easier said than done with a 12-14 month old I'm sure!).  After the 12 weeks he should be completley back to normal, only a scar on his head which should be covered by hair.  He will continue to see the plastic surgeon for 6 years (I believe) for observation but otherwise should be able to live a completely normal life.

One of the things we do remember the doctor telling us is that this surgery is performed at Vanderbilt 2-4 times per week.  This was also shocking to me!  Now that I know about it and can research online, I see there are so many "Cranio kids" out there and all the stories I've seen have been so positive.  I know he is in the best possible hands at Vanderbilt.  We are so blessed to live just down the road from one of the greatest children's hospitals in the country.  We are also so blessed to have amazing family and friends who have offered help and prayers during this time.  I have to remind myself almost daily that while this is big and scary, it could be so much worse in so many ways.  As someone pointed out to us...we got bad news, we didn't get tragic news.  This is something we can get through and come out on the other side relatively normal.  

So now we wait...I don't know if there will be much to post about between now and the surgery.  We have a pre-op appointment on April 30 to meet with the neurosurgeon and become acquainted with the hospital.  Between now and then we ask for your prayers that everything will go as smoothly as we believe it will and Collin can very quickly go back to being the happy, smiling, energetic toddler he is now.  

More to come!

Here is a picture from the top.  It is amazing how you never realize something is wrong or different until you're told so by an expert...I just assumed he had a narrow head/face.  It will be very strange seeing him with a round head!

(pic by Leila Hunt Photography)

Looking back at pictures from months ago, now I can tell how much smaller his forehead is than the rest of his head.  In this one you can see that there is some stretching around his temples...this apparently will no longer be there.  I've read that his eye shape may also change, becoming more rounded.

Thursday, May 3 (Surgery Day!)
9:20 am: Surgery is underway. They took him back to be put under anesthesia at 730 and we got the call that the neurosurgeon has begun his portion around 9am. He will make the incision and ensure the brain is taken care of. His part will take around 45 minutes then the plastic surgeon will take over for te bulk of the surgery. Anticipate surgery to last until 1130 or 12, but it could be later. Will try to update as we hear more.

1:52 pm: Surgery over, according to the dr everything was perfect. We are in recovery right now and he looks almost normal other than the bandage on his head. He is awake and breathing on his own. Already drank 8 oz of apple juice and wants more! They gave him some more pain meds so he is resting now. We will be here until a room becomes available in the PICU, which could be a while but definitely today. It is such a relief to be on the other side of it but the hard part is coming now. He is in a car seat to stay elevated with his arms strapped down. He will stay in the carseat until we move up to a regular room. I expected him to be completely sedated for these few days, which was honestly a little less scary. I hate seeing him awake and frustrated because he can't move or do what he wants to do. The dr explained that the first week at home will be a challenge because he will need to sleep on his back...this child has never wanted to sleep on his back. They said he may learn to sleep on his back in the week we are here but if not we may have to make him sleep in a carseat. We're hoping that's not what happens. I know we've got a lot to happen between now and then but I wanted to post everything as we find out so we don't forget! Oma and Jiggs, Gamma and Poppy and Aunt Em and Aunt Bri have all been back to see him. As I was leaving the last time they were about to give him some formula which will hopefully make him a little more comfortable. I'll post more later when we get into the PICU.

Friday, May 4 - 7:05am:

Day 2 begins

Well the first night is behind us. We finally got into a room in the ICu around 430 yesterday. Collin's pain level is being managed here with Tylenol/kodene and morphine. He has been eating 2-4 oz of formula every couple of hours...sometimes it soothes him to eat when he's not ready for more pain meds. We had a great nurse Josie when we got here yesterday and Natalie took over last night. We will have Natalie again tonight. She has been great. Unfortunately we didnt get a sleep room last night so we switched shifts between Collins room and the family lounge that has chairs to pull out into beds. I think we both feel like we got a little over 5 hours sleep which is more than I've had the last few nights, so not bad! Collin did have fever throughout the night which they say is typical. Around 5 this morning he seemed to be very agitated and in a lot of pain. The nurse told me this is probably the peak of his pain level. Good to hear that it will get better but it is still heartbreaking to know he's in so much pain. Btw, I realize I am all over the place with this post but I'm trying to include everything as I remember it. The doctors came in around 630 this morning and tool off the big bandage covering his head. Now we see a big bald head with an incision ear to ear. He actually calmed down tremendously after the bandage was removed. His heart rate dropped by 10 or so points which was a good thing. It should be easier to regulate his temp without his head buried under 5 lbs of gauze. The swelling is bad right now. That is the hardest part to see. His eyes are swollen shut, will probably stay that way for a day or two. He definitely doesn't look like my Collin right now. They say the swelling hasn't reached its peak yet, that should come later today. Then it will begin to decrease and his eyes will open again. He really seems to respond well to Matt or me being close to him, rubbing his leg, holding his hand and singing to him when he is upset. I guess all those other senses kick in when the sight is gone. We've been told the first 30 hours in ICU for these surgeries is the worst, so please continue to pray for our little man throughout the day today. Pray that he will continue to be able to be comforted and that the doctors and nusrses will be able to keep his pain under control. More later...

Saturday, May 5 - 2:04pm:

Rough Night, but Getting Better by the Minute!

Hi all!  Sorry for the delay between the last and this post.  Yesterday and last night were rough...much worse than we had anticipated.  Due to a lot of outside factors, there were some times overnight that Collin didn't get the pain medication he needed in a timely manner.  It is a blessing to be one of the least sick children in the ICU, but it also means the attention of the nurses is elsewhere.  While we understand and certainly want them to do whatever they can to help those other families, it is hard to see your baby in pain, even if it isn't as bad as someone else's.  But we're past all that now.  I may take the time later to detail the events of yesterday and last night, but right now I want to focus on the happy stuff!

I think my baby is coming back!  He has started sounding like himself again...until this morning he was hoarse and only made sounds when he was upset.  Now he is starting to sound like the loud and feisty Collin we recognize.  The swelling is also going down!  I asked the nurse this morning and she said it's only because I've seen him constantly for the last couple of days, but other people have noticed now too.  Yesterday I had to look at his feet or hands to recognize Collin.  Today his face is starting to look more like normal as well.  Even this morning his eyes were so swollen that his eyebrows were completely stretched out, but now his eyebrows almost look normal and we can see eyelashes again!  I am here by myself right now because Matt is home sleeping and I so want someone else to be able to witness this!  It's truly like he is changing by the minute.

He really didn't eat anything yesterday even though they stopped his IV fluids to make him hungrier/thirstier.  This morning they had to feed him with a medicine dropper, but he's just finished a small bottle of pedialyte and formula for me!  Nothing like the four 8 oz bottles we're used to seeing him suck down, but this is definitely progress.

One thing has me the most excited...and really brought on the happy tears...He got restless a few minutes ago so I gave him a book that has a lot of different textures and he was actually playing with it.  He was moving it between his hands (not easily as he still has restraints on his arms to keep from pulling wires out).  I asked him if he could do Patty Cake for me and he brought his hands together!  He's obviously not able to clap like he normally would, but I could tell the intent was there.  He was playing!  He tired out pretty quickly and went right back to sleep, but for that couple of minutes he was actually being a little boy and playing!  I can't wait until Matt gets back...Collin responds really well to his daddy's voice so I feel like he will perk up when he gets here.

I know we have so much hard stuff to come and we're definitely not out of the woods yet so please keep praying.  I just had to share a few happy thoughts for those of you who I know are craving good news about our little guy.  More soon!

Tuesday, May 8 - 2:50pm:

Home!

Saturday night - So I guess the last time I posted was Saturday afternoon after Collin opened one eye and had shown some signs of getting his personality back.  Max came to the hospital that afternoon - we didn't let him go up to see Collin but Matt and I got to spend some time with him and go to dinner. That evening he continued to improve and the swelling went down even more.  Not sure exactly what time but his other eye opened that night as well, so we knew we would be heading up to a regular room at some point on Sunday.  Collin also had his last dose of morphine in the early hours of Sunday morning.  They had been backing off of it all day and he really didn't seem to be feeling that much pain after his eyes both opened.  At that point he was only taking antibiotics and tylenol with codeine.

The plastic surgeon on call came by Sunday morning and said everything looked great and took his drain out.  We found out our new room number and they got Collin ready to move.  He was still attached to some monitors and IVs and all of that had to come out/off before we could go up.  Matt was home sleeping (it seemed like all the big stuff happened when he was home sleeping!) so Aunt Em and I moved all the stuff up to our new room.  We were in the biggest room on a wing that had only opened 3 weeks ago.  There was a couch that folded into a bed and a large sleeper chair.  The bathroom had a huge walk in shower and there was a flat screen TV and refrigerator in the room!  I've never seen a hospital room so nice.  The best part of moving up to the floor was that I finally got to hold Collin for the first time since sending him back for surgery Thursday morning.  I think he was pretty excited about it too.  I'm not sure if I ever explained that he had been confined to a car seat sitting in a hospital bed/crib.  They use the car seats to keep their heads elevated to help with the swelling.  So I'm sure after 72 hours of being in one position he was just happy to be held and not in that seat!

One of the things we were concerned about during the three days in ICU was how little Collin was eating.  The first night after surgery he ate (drank) a good amount of formula but after that he didn't seem interested in it at all.  He would drink a little apple juice or a couple ounces of formula here and there, but nowhere near the amount that he normally eats.  He also wouldn't eat any baby food.  Once we moved up to the room he did eat a jar of sweet potatoes but refused to drink anything.  Between the time we got up to the room and midnight on Sunday he only had about an ounce of liquid.  The nurses were getting worried about dehydration and started talking about hooking him up to IV fluids.  I asked them if I could try to make a bottle out of his powder formula instead of the pre-mix formula they had been trying to feed him.  Apparently he knows his formulas because he immediately sucked down 6 oz!  Thankfully that was enough to keep them from running IV.

So even though our room was much more comfortable than the ICU we knew that if we were going to make it through the rest of the week Matt and I needed to each get a bigger chunk of sleep than 2-3 hours.  I decided to get a hotel room for Sunday night so Matt could go first then switch off with me at 4am.  That would give us each the opportunity for 7-8 straight hours of sleep.  I ended up getting a great deal on a hotel downtown on priceline and Matt went to take his turn.  He woke up refreshed and ready to go around 2:30 am so he came to relieve me.  I got to the hotel and had trouble going to sleep - Collin had actually slept fairly well in the room so I had already had a couple of hours.  I finally drifted off around 4:30 I guess...and by the way...the doubletree beds have to be the most comfortable beds on the planet.  Or maybe sleeping in a fold out chair in the ICU for 3 nights will make any bed seem wonderful.  So my phone rang at 7:20 and I was terrified thinking something had happened.  It was Matt saying that Dr Kelly (collin's surgeon) had come by and said it was time to go home!  I was in shock!  They've been telling us 7 days all along but I really felt like it would be 5, which would mean we would go home Tuesday.  I never expected to go home less than 24 hours after moving to a floor.  I was terrified - not sure of how we were going to manage to keep him from hurting his incision.

The nurse told us basically we have to be within arms reach at all times when he is awake and moving around and if he is standing we actually have to have hands on him.  He also has to sleep in his carseat.  We've got it over in his crib propped up by pillows and it's got some extra padding.  He also has to wear a foam donut around his neck while he's sleeping to keep him from pressing up against the side of the carseat where his incision is.  Scary as it was, we got home yesterday around 11am and things have been going well so far (considering)!

He is almost back to normal on the amount of food he eats and he's sleeping fairly well in the carseat.  He was up twice last night for about an hour and a half each time but he went to bed at 6 and was up at 8, so we really can't complain about him getting 11 hours of sleep overnight!  It is a challenge, and exhausting, when he is awake to keep him from falling down.  We've already had a couple of spills but nothing bad.  We really just have to crawl around with him and not look away at all.  You don't realize how independent your children are until they can't be...I mean, you can't walk away to pick up your phone unless you take him with you or someone else is there to catch him if he falls.  I think that will get easier over the next few days as he gets less and less medicine and his body isn't working so hard to heal.  He isn't nearly as steady as he thinks he is.  I'm sure his head being twice normal size doesn't help matters any!

Well since he is resting I think I will go get some more rest myself.  Who knows if he'll sleep as well tonight!  More soon! 

Introduction

Our family has a blog that we started before my older son Max was born to keep family up to date on the happenings of our family and to post pictures of the kids.  Once we learned about Collin’s condition and upcoming surgery I posted information there for friends and family to have a place for updates about the surgery and recovery.  I started this blog specifically to tell Collin’s story and give support and advice for families who are going through the same type thing.  My next post will be all of the original posts from our family blog with dates to give all of the details of our time leading up to surgery and in the hospital.  Please feel free to contact me with any questions you have and I’ll answer whatever I can.