Almost 5 months later..

And if you don't know he has a scar across his head you never would guess!  Happy First Birthday!

The day we got to come home and about a week later

Finally loaded some pictures! He barely has a black eye now at all!

The pictures are from the day we were leaving (almost 2 weeks ago already!) and then the others are after we had been home about a week!

While his eye was still very bruised it made him look a little cross eyed, but he isn't! He can open it pretty much all the way now, it is still darker on some parts, but it hasn't even been 3 weeks and he looks SO good!  If I could get him to hold still I would have some new pictures :)

We are home!

We got to come home yesterday afternoon! He is doing great, opening his black eye about half the day! Everything seems SO normal, except that he won't roll over, I think it bothers his incision when he does.  Other than that he is sleeping well, not as good as before, but better than I expected, and eating like a champ. He had carrots for the first time today and since he is SO pail his nose is already orange! I took a couple pictures as we were leaving the hospital and 1 or 2 today, but the camera is in the car and I am too tired to go unpack it! I will load some more pictures soon, and thank you so much for all the kind words!

Day 4

We got to move into a single room last night around 10:30. The room was, shabby, I guess, compared to the one we were in, and I didn't mind at all! There is no table and it's further away from stuff, but I can hear my sweet Finnley snoring and not jumping every 30 seconds, so no complaints here!!
As the night went on we realized we were going to be ROASTED in here.. it's 80 some degrees and it's still such an improvement! He slept SO well last night and was playing so good. He is sitting on my lap and playing with some of his toys, almost as if nothing has changed for him.

He has been awake much more today and wanting to play and sit up, rolling over.. All the things I am trying to keep to a minimum still, I don't want him to overdo it!

Big brother and sister came and saw him today, Carsyn just wanted to touch it, and Ramsey was a little scared of the way he looks, but was very gentle and nice and loved on him. He also thinks the dried blood looks like a raisin.. Funny kiddo!

We talked to the doctor's assistant this morning. Got the all clear for 1 of the 2 Iv's to come out and the heart rate monitor to come off.. Finnley will be sad, he won't have any cords to play with! I am glad they are out of the way, each thing removed makes it feel more and more normal! We also got the OK to come home tonight if we wanted or we can stay until tomorrow. I decided we should stay until tomorrow.. he hadn't had a #2 and that was a requirement and I want to make sure he can go an entire 24 hours without any IV pain killers because that is the last thing we want, is for him to be in pain! So as long as tonight and tomorrow go well we should be going home!!

Lots of visitors today, he skipped an entire nap just to play! His black eye is more yellow and slowly fading, they expect it to be that way for a while though. His forehead skin looks SO much better, the first day it was SO shiny and looked like plastic because it was so swollen and stretched out... this morning it looked like frosted glass from the swelling going down you could see every little wrinkle.. or wrankle if Ramsey says it. The swelling will come and go, from one side to the other for a while but he is already looking so good!

The doctor also told us that his case was very rare and he actually didn't have craniosynostosis because the plates hadn't fused to each other, he had something else.. I need to check the name again. But it was fused on the side of his head more, not at the sutures. Either way it's about the same process and the most difficult parts are over! I could not be happier with the outcome!

They decided (and I was relieved) to make him use the heart rate monitor overnight. He was playing with that cord within 30 seconds!

He seems like his eating is leveling out. He is eating less at a time but more often, I think he would rather play than eat! Excited to see what he looks like in the morning, but here are the pictures from today.

Day 3!

Last night was ROUGH! We are at a great hospital that has a very good children's unit, which means they get full often, the bad part is you can't control your neighbors! The same ones from yesterday with the 5 week old with a broken leg..the mom is VERY young, and can sleep through her baby crying all night. Sad for their baby and sad for my little guy who needs to be kept calm and quiet with little activity. Due to his eyes being swollen shut his hearing is VERY sensitive and every single little noise wakes him with a start and could be painful for his little head. The neighbors had visitors here until after visiting hours, phone ringing until midnight, tv on loud, moving furniture, crying baby, planning what to tell the police until the middle of the night, CLUELESS that EVERY single noise they made was upsetting my little one. (I have never heard someone make SO much noise eating, ever!) I am sure part of it is my stress level but I was NOT happy with the whole situation last night. I was ready for the police to come and haul that baby's dad to jail already and for the mom to SHOOOSH.. well it didn't happen and it just continued ALL day today. I was able to get Finnley to sleep for a couple hours between, nurse's checking on him and the loud ones, he seems to be ok with lack of sleep so far. As for me.. my nerves and stress have me feeling SUPER emotional!


Natalie was his nurse overnight, she checked his weight this morning and he had gained over a pound of fluid since we checked in on Monday. He will have some serious wet diapers soon! And he is not on morphine or fentanyl anymore. Just Tylenol with Codeine.

The day was rough, TONS and TONS of visitors for the neighbors, family, police, a hundred case workers, ok not a hundred but it felt like it, and a number of doctors. Some to check for shaken baby syndrome, some to talk about the baby's brace, a few radiologists and so on.

I don't like to leave the room at all. I just worry that as soon as I walk away he will need/want me. Ryan is here and can do just as good a job of course. We don't leave him in here alone at all, not for a second! I decided I would try to go change and clean up and make a phone call to vent about the crazies next door. Changed into some clean clothes came right back and picked him up, I was not back 30 seconds before Finnley threw up ALL over me. Guess that will teach me to leave huh?

This evening was MUCH better. The neighbor baby got his brace and all their visitors are gone.. Really was hoping they would take them with them, but they didn't. Finnley seems to have MUCH more energy and he is trying to do stuff I am not ready for him to do. Stand on my knees and bounce.. That HAS to hurt you would think?! He did open his right eye a little tiny bit for the first time since it got really swollen AND... He gave me a toothy chubby baby smile that made my day! He hasn't smiled since surgery and I was worried he was in serious pain still when he was awake. I think he was showing me he is on his way back to being the happiest baby ever!

We requested a room change last night (once we found out the neighbors were bad news) we have been waiting ALL day. They are already overfull, but they told us they are working on opening the overflow dental area to get us a room, ALONE! I am soo excited for Finnley to not cry everytime poor neighbor baby cries. We will have MUCH more control over keeping him calm/quiet and when it is ok for him to be awake and asleep (since we can't really tell right now when he is awake and medicated or asleep) So it's 9:30 now and I hope this change comes SOON.
Here are some more pictures, maybe a little less gruesome but still not back to normal, although his black eye is more purple less black AND seems to be shrinking by the hour! Hoping tomorrow brings some more eye's and smiles!

Day after surgery

12 hours after he was in recovery I was finally able to hold him! It was very uncomfrotable and I dont think it was comforting to either of us. He was still all hooked up and pretty much every movement seemed painful, he was on a bunch of pillows so there wasn't really a way to get comfy for either of us, but I will take what I can get!

He is getting very puffy and black and blue and warped looking, It does not look good. If I hadn't seen him hours before I would not believe it was him, he looks SO different! His forehead area is SOO swollen from all the IV fluids his neck is swollen, he just doesn't look the same, he looks like an alien! I am SOO ready for the swelling to go down (but it won't for a few days).

He had a small fever, apparently it's normal with procedures, and with some tylenol it went away pretty quickly!

He started bottle feeding easily this morning and was able to get off the IV.. WOOHOO! He is eating about half what he usually eats and seems just fine, the medicine suppreses his appetite some.


He slept off and on through the morning and the IV was disconnected and he seemed in much less pain.. so we tried the holding him thing again..SO much better and he went right to sleep with some snuggling.

He kind of looks like a pirate, 1 eye is BLACK from bruising and he was barely opening his other eye, he can't open it anymore the swelling has started in the other eye some too.. The left eye is worse because he pretty much had a brow lift. He was having a hard time getting comfy later on in the day, the morphine was making his nose itch, I thought he was going to rub his tiny nose right off. He managed to rub some sugar water and tylenol all over his face, we were cleaning him up and he decided the wash cloth would make him feel better, no idea why but he started to suck on it... I dont really care what he wants right now, as long as it makes him happy.

Moving on from PICU.. YAY! This is a good step, it means he is doing a good job of managing his eating, pain and heart rate and all those other things.

The last picture is just his toes.. this is just what kind of kid he is, he is a amazing baby with a little bit of a troublemaker side.. he had those in his toes every 10 minutes!

Grandma and Grandpa came for a visit and brother and sister were NOT allowed to see little Finnley yet. They are sensitive and I don't want to scare them. Instead we had some ice cream in the adorable childrens garden here!

I think so far today the worst thing has NOTHING to do with us. I am so thankful for our amazing family and friends and that our little one is healthy, the other person we are sharing a room with has an abused baby, less than 2 months with a broken leg.. has had it for DAYS. Things like this make me thankful that I can stay home with our babies and we don't have to worry about who is with them!

OK.. I am going to add some pictures. They are still a little gruesome..

Surgery Day

Today felt like THE longest day!! And I am super tired, please excuse my grammar and spelling! Surgery was scheduled for about 1pm (they were doing another one in the morning) so check in was 10:30. Finnley did not want to eat this morning and refused to have more than an ounce or two of juice.. so he had not eaten well and I knew he was going to be grumpy, even though grumpy for him is nothing to most kids! We played in admitting for 2 and a half hours, then moved to pre-op where he did start to get a little fussy but overall still very happy. I love his little gown! The gown pictures are all from before surgery, when we were wasting time.

They took him back for surgery at about 1:40 and I really think that handing my sweet baby over to a complete(but very nice) stranger knowing she was making him sleep for a while and I had NO control over any of it from that point, was THE hardest thing I have ever done! I was amazed that I held back the cryfest until we were out of the room.


Then the waiting....waiting and more waiting! We were able to get an update at about 3:30 that they were about half done and he was doing well. Then more waiting. The Doctors (nurosurgeon and plastic surgeon) came in about 5:30 and they were done! Finnley was in recovery getting some good drugs on board after waking up from the anestesia. We didn't get to see him until 6:10 and that was for a very short time, long enough to see that his head looked NOTHING like I expected and for me to have a small breakdown, walk up to the PICU where we then had to wait outside for 20 more minutes while they did paperwork and got him settled.. I thought I was going to have to break down the doors.. I NEEDED to see him and hold his little hand!

We didn't really get any details about the PICU because we came in just before shift change. The nurse did ask if he was always that pale, she was a little concerned since he had a transfusion that he was still that pale.. sad thing is he actually looked a little darker than usual! He is all hooked up to a number of things. 1 IV in his hand and 1 BIG IV in his neck, where they could easily do the transfusion, which is usually necessary, and they can usually do a draw from it the next day to check his blood levels. He also had a catheter ( which he disconnected and got pee all over the bed) and was not happy about being moved around. Other than that so far since he has been in the picu there is a lot of nothing going on, morphine to keep him asleep/sedated and when he does wake up he whimpers and it breaks my heart! I can't pick him up easily and I am afraid to hurt his incision! The pictures are not great, but it is almost from ear to ear. So all I can do for tonight is hold his hand which is SO puffy from the IV's it doesn't even feel like his hand, and listen for him to start snoring again. I have some pictures, but they are a little gruesome so stop here if you don't want to see them!
 

I am going to take more pictures in the morning. He will probably be even more swollen and puffy. I am staying in the PICU with him, I just can't go sleep, I know I would never fall asleep! Hoping tomorrow he will get some of these cords off and I can sleep when he sleeps and get some snuggles in! We didn't get to talk to the Dr. much today but I have LOTS of questions for her now that I am not feeling on the hysterical side.

Well.. New surgery date. Tentative for May 10th! Just over 2 weeks!

A visit to the Nurosurgeon this week.. and she said she thinks the helmet might be working, but not as fast as it should be.. so back on for surgery. Honestly this time I didn't cry and I feel much more at ease about the whole thing.. I am ready for the entire thing to be over. I am sure Finnley doesn't like to be in the car for hours every week to the Dr. or the helmet, well actually he kind of loves his helmet! If he isn't wearing it, he wants to play with it! Here he is in it :) Cute baby!

And the necklace is from Inspired by Finn, baltic amber magnetic closure teething necklace.. he has 6 teeth now and not a peep out of him about any of them and they are BIG!

Another Check Up

And still NO change on the front of his head. Really bummed but I was prepared for it, so back to the Nuerosurgeon we go.. I think the appointment is next week. Hopefully we will get some news at that appointment! 
He is such a happy baby, you would never know he is at the Dr. ALL the time ( it sure feels like all the time).  He is trying SO hard to crawl and he is cheating and using his helmet as leverage to get on his hands and tippy toes!

Went to the Dr. for a checkup

And they measured his head.  No change yet!  I thought it looked different a little, and so did the Dr. but the measurements aren't showing any change, this is not the news we were hoping for. He has 3 1/2 weeks in the helmet left and they will re  measure, if there is still no change it will be back to the Nuerosurgeon and surgery. Still hoping this stinky helmet works in the next couple weeks!  Finnley doesn't seem to be bothered by the helmet at all! The first week it was bothering him, rubbing his poor little skin off a little, and he had a hard time adjusting himself into a comfortable position to sleep.  They lined the inside of the helmet with moleskin and he has had a much better time with it (and now he just rolls onto his belly to sleep).

2 things I have learned about helmets!

1... Even though you order Dark Blue.... it's really purple!

2.. VERY important!  THEY STINK!!  It must be the helmet, cause my little sweet pea doesn't stink :)
       Seriously even after 5 minutes he is all sweaty and smelling like a teenager!  (we knew he would be   
       sweaty, but the smell I was NOT prepared for!)


He doesn't seem to mind that much, when he is trying to fall asleep he tosses and rolls a lot more trying to get himself comfy.  When you hold him you have to be very cautious... that head is now a weapon!
I will try to post some pics soon!

Today was the big day!

And we got our very own miracle.. After reviewing the ct scan's again the plastic surgeon and nuerosurgeon decided that even though he is what they would call a severe case on the outside.. the inside is actually NOT fused.. So we got to come home today with NO surgery!  He will be fitted for a cranial helmet soon and try that out for a couple months and see if it is working, if not we are back to a possible surgery.. We are all so relieved for our little guy!  We have an amazing group of family and friends that are so supportive and wonderful we can't thank them enough!!  We didn't find out until after we had been at the hospital for over 2 hours that we were skipping the surgery for now... so he was already in his cute little mini hospital gown.. totally cute on him. Once I am caught up on sleep I will find the camera and load a couple pictures!

2 Days To Go!

And I am nervous as can be.. but I have done all the prepping I can do and the rest is up to the Dr.!
I did take a new picture of Finnley though.. Usually when I get the camera out he refuses to smile.. he just stares at the camera..  But he was extra giggly..
I probably won't update this again until  after his surgery.. *hoping* to sometime the day of.. as long as things aren't too crazy!
He can't have any formula after 2AM Thursday, and nothing after 6AM.. I am a little worried he will be hungry and upset while we are waiting..

Oh I almost forgot..

As of last Monday Finnley has 1 super cute tooth.. #2 comes and goes.   He is SOOO close to rolling over from back to front.. he spends the majority of his floor time on his side grunting!   His skull issue doesn't seem to be effecting any of the other milestones, it usually doesn't,  just thought I would share!

~Couple more pics and the next step towards surgery~

Thought I would add a newer picture where you can kind of see his noggin a little different.  Thanks to Stephanie at Memories By Stephanie Photography for the pictures!  You can really see in the top picture on his left side above his eye, it looks like there is a little indentation.  Of course we still think he is perfect!

One of the things the hospital recommended was that we organize a blood donation from either Ryan or I for the baby because they have to have a transfusion after/during the surgery... Of course both of us as well as a number of family members (LOVE YOU GUYS!) offered if for some reason we weren't able to donate for him.. So we got that taken care of yesterday, that was a much longer experience than we expected, neither of us had donated before.  Ryan donated.. I am not so good at needles and we both matched.  His surgery is 1 week from tomorrow and I have yet to start packing or planning. Everytime I start, something comes up. That is just the way it works with kids I guess! 
We are hoping to stay at the Ronald McDonald House while we are there, at least somewhere we can sleep if the baby is asleep.  I know I won't be able to go sleep if he is awake.  I had never really thought about the Ronald McDonald House until this whole thing started and we found out a surgery was happening.  I didn't ever really think about how much it would cost if we had to pay for a hotel OR drive back and fourth everyday. We are very thankful we might get to stay there (as long as it's not full).

Finnley.. just a few days old!

The part of his skull that is already fused is his left front plate. I don't think it is very obvious in this picture but the opposite side of his forehead looks bigger.  And he really does have a bottom lip I promise!

Craniosynostosis

is a HUGE weird word.. but for any of these other posting to make sense.. you should have a general idea of the condition.. This is an overview
Craniosynostosis is a congenital (present at birth) defect that causes one or more sutures on a baby's head to close earlier than normal. Sutures are connections that separate each individual skull bones. The early closing of a suture leads to an abnormally shaped head.


Here are a couple websites to check out
https://health.google.com/health/ref/Craniosynostosis
 
http://www.craniokids.org/