One Year Ago...

 One year ago...

This Friday will be the one year anniversary of Miles' cranial surgery.  This week has been full of emotions as we remember the events and feelings we were going through at this time last year.  As I was going through the blog posts from that time, tears were rolling down my cheeks.  But I have to say that what is overwhelming to me is not thinking back to the fear and worry that we were feeling at that time, but what is more overwhelming is how much we have been blessed throughout this year.  We had so many people praying for Miles: friends, family, church members, co-workers, the craniocarebears organization, the boys' daycare and their church, and people we didn't even know.  People were praying for everything: Miles' successful surgery, Miles' health, Miles' helmet therapy, safe traveling as we drove back and forth to Ft. Lauderdale, our well being as we cared for Miles, Maxon's well being throughout Miles' recovery, our finances to cover medical bills, everything.  I have a list of about 10 different prayer requests we had, that I emailed out to friends and family, and I can tell you how each of them were answered this year.  Wow, what a year!  God did some amazing work in this story that was just beginning last year around this time.  When we think of all he did and how he answered every prayer, we are overwhelmed with praise to Him, and gratitude to those of you out there that he used to somehow help us through our story.  Here are some pictures from the day of surgery:

One year later...

A year after the surgery and Miles is doing great!  He made it through helmet therapy and has been "graduated" for about 4 months.  His head is measuring in the "normal" range as far as shape goes and the bone is continuing to grow.  He still has a small spot right on the top of his head (where a normal soft spot would be on an infant) about the size of a fifty cent piece where the bone has not grown in, but the surgeon said that could take until he is 4 years old.  I am counting it as a blessing because as long as that is still open, we hope that means that the bones are not re-fusing at this point.  While in helmet therapy, he developed quite the lumpy bumpy head, which I am happy to say is evening out now since being out of the helmet.  :)  Miles is developing on track and is a typical rough and tumble 18 month old boy (much to my dismay).  :)  Because of all he has gone through, I would be happy if he enjoyed sitting and watching TV versus running full speed through the house, wrestling with his brother, or jumping on the bed.  NOT A CHANCE!!  I am counting this as a blessing as well because it shows me that he is a typical child, unscathed by his surgery.  Throughout this past year we grew to know the orthotist very well, who saw us every 3 weeks throughout his helmet therapy, and we also saw the surgeon every 2-3 months.  This summer we met with the craniofacial team, which is a team of 12 specialists including his surgeon who will monitor him until he is about 6 years old to make sure he is continuing to grow correctly with no other issues.  We were very pleased when all the specialists told us they would see us in 12 months.  12 months!!!  That means he is on the "monitor annually" list because he is doing so well and the surgery is so far successful!  Wow, what good news!!!

We thank God every day for what he has done for Miles and for us, and we will appreciate you joining us in praising Him for blessing our family.  We continue to pray for Miles' skull bones to heal completely, for the bones to not re-fuse, and for no surgeries needed in the future.  Thank you for joining us in those prayers as well.  Here are some pictures a year later:

Good news!

Finally getting around to updating this thing again!  Miles graduated helmet therapy about 2 months ago, which was bitter-sweet. We were so happy to have his head more accessible for kisses and snuggles!  But we also felt like a part of him was missing since he had the helmet on for 8 months!  And the helmet definitely became a security tool for us; we never worried about him hitting his head!  After it came off for good, it took us a while to not panic every time he bumped his head. :). But now that it has been off for a while, we are loving it. His hair is growing in thicker now and his scars are not as noticeable. He still has some bone that needs to grow in but it is only about the size of a normal soft spot on a baby's head. And we are told it could take until he is 4 years old for it to fill in.

He is still being monitored by the surgeon to make sure his head is growing correctly, that the bone keeps growing in, and that no new fusion of the bones occurs. We have been seeing the surgeon every 2 months. We just had an appointment today with the surgeon and the cranial facial team, which is made up of about 13 professionals from different disciplines who will monitor Miles yearly until he is at least 4 years old. Today was a a good appointment. All doctors and therapists said he looks great and is on target for his age, meaning that so far his craniosynostosis is not effecting his physical or cognitive development. yeah!  And since he is doing so well, we don't have to see anyone again, including the surgeon, until 12 months from now!  That was shocking when they said that. My reaction was, "are you sure?"  :). I am feeling a little separation anxiety set in after seeing someone from his office at least once a month throughout this past year. :). However, I am thankful to not have to make the 2 hour drive so often now. :)

So, great news today and hopefully we will continue to get that great news every year now. Thank you to those who have been praying for Miles!  He is doing great and we will appreciate continued prayers for no more surgeries needed for his head in the future. Thanks!

2013 Update

Well, it has been about 3 months since I've posted a blog.  The holidays and traveling and doctors appointments and work have kept us very busy.  We had a wonderful Thanksgiving with Nick's sister, Jenn, and her family.  Then in early December we went to New Jersey to celebrate Nick's grandma's 100th birthday!  That was exciting and was a great trip to see friends and family.  Then we spent Christmas in the snowy north, in Michigan, with Grandma and Grandpa and Uncle Ken.  Maxon's 3rd birthday was January 3 and he had a fun party with his friends at the playground.  Whew!!!  Now, things have slowed down just a bit and we are enjoying getting some things done around the house, or trying anyway.

Just before Christmas, Miles had another follow up appointment with the surgeon.  We got good news at that appointment, that Miles' head width/length ratio measurement had just finally made it into the "normal" range.  However, the surgeon said that we have a while to go with the helmet just to keep guiding the shape of the head.  That was not unexpected for us and really quite okay since he still has a large soft spot on the top of his head.  :)  The helmet has never really bothered Miles at all.  I actually think he would feel weird without it.  He is so laid back and relaxed!

It is amazing what the body can do.  The portion of the skull that was removed during the surgery is probably about 70% re-grown already.  We have been able to feel the large soft spot that followed the surgery get smaller and smaller each week.  And overall, Miles is doing great.  He is meeting his milestones and is only going to physical therapy once per month now to treat only slight tightness in his neck.  Each time we take him to the orthotist to get his helmet adjusted, she says he is looking great.  Last time we went, she even gave me the inclination that he may be finished with the helmet by his first birthday.  We aren't getting our hopes up though, just in case.  :)

Miles will have another appointment with the surgeon late February/early March when we will know more information on how long Miles will need the helmet.  We are continuing to pray that his new bone growth does not fuse again, and that his head continues to grow correctly; all going towards the big prayer of no more surgeries!

Looking back on 2012, it was definitely a roller coaster year for us.  We went from the emotions and excitement of having a baby, then the fatigue of having a new baby and a toddler, then the worry and anxiousness of getting Miles' diagnosis and plan for surgery, then of course the stress of the surgery, and then the excitement and happiness of a successful surgery, followed by a little worry here and there about his recovery.  :)  And although there were a lot of stresses in 2012, we were blessed beyond what we could've imagined.  God saw us through everything and provided exactly what we needed when we needed it.  Awesome.

For 2013, we are hoping for a less eventful year :) and a year of good news.  We are calm and confident in the start of this new year as we know that God has his plan for it and it is good. 

The lid!

We made it!  We survived the month following the surgery!  Wow it feels like such a blur to me now-the whole thing.  We were successfully able to keep Miles free from infection and safe from his big brother. :).  Miles has had his helmet (his new lid as Nick puts it) for a week now and has been doing great. It has been unreal. He has been very good about not pulling at it and he doesn't seem bothered by it at all. The craziest thing was his sleeping. Ever since the surgery he hasn't slept well.  Nick or I would be up with him 3-4 times a night. So his first day with the helmet we were like, "he has to sleep in this thing, huh?  This will be fun.". In preparation for the first night, we had coffee brewing and very low expectations for getting any sleep.  To our surprise, we put him down and he slept all night!  And he has ever since.  Crazy!  We still didn't sleep of course because we were worried about him. Go figure. :). Now Miles is wearing his helmet 23 hours per day and will do so for a minimum of 3-6 months. And he is back at daycare now, and back to normal!

I felt a huge relief when Miles finally got his helmet. One, because now I don't have to worry so much about protecting his head. Two, because the helmet actually does 90% of the work to reshape his head. The surgery was to provide space for the skull to expand with the brain as he grows and the helmet afterwards is to re shape his bones and guide the shape of the skull as he grows. So I was glad to finally get started with the bulk of his skull correction.

Worry. I try my hardest not to do it because God wants us to trust in his plan. And it really doesn't help anything to worry. But, I have definitely been worried over the past few months. It seems as though I was worried about one thing after the other. Prior to the surgery I was worried about the surgery, then about complications during and immediately after the surgery, then about infection and keeping his head safe when we got home, then when we got the helmet it was about the fit and effects of the helmet on Miles.  Wow. My head feels like it has been so full lately!  I am sure that I have neglected some things here and there and apologize to my friends and family if it was you or something I needed to do for you!  I am hoping I can get my act back together soon, but no promises.
:).

Perfect!

"Perfect".  That is the word the surgeon used to describe Miles at his 2 week follow up appointment.  :)  We went over to Lauderdale this week for his follow up and the surgeon said he looked perfect and was healing well.  The next day, Miles was measured for his helmet, which will come in 2 weeks.  They aren't sure how long he will need to wear the helmet, because it will depend on how fast he grows and how fast the new bone grows. 

So, we are all good here.  The two weeks following the surgery were stressful, just making sure to keep his head safe and keeping it infection-free.  And we still worry about keeping him safe especially from our energetic son, Maxon, but Max has been an incredible big brother and is usually very careful around his brother's boo-boos.  Miles does not appear to be in any pain now and is playing on the floor and eating well as he always did.  And he has been a good boy, not messing with his incisions too much.  He will try to touch them once in a while but will stop after we stop him a couple times.  However, the poor baby did get a "double wammy" the past couple weeks.  Those two weeks, he was a bit fussy and uncomfortable with what we assume was a little pain, but this past week he also cut his first two teeth! :)

We have taken him out in public a few times.  Now that he is at a lower risk for infection, we feel more comfortable to get him out and about.  Until he gets his helmet, it is a little awkward to take him out because his incisions are fairly large and he now has a large visible soft spot in his skull.  So needless to say we get some double takes and funny looks (not that we won't get those looks with the helmet as well).  We have a cute little hat that he can wear in public until he gets his helmet that was sent to him from Cranio Care Bears, which is a non-profit organization that sends care packages to families nation wide who are expecting to go into a surgery for craniosynostosis.  You can find out more at www.craniocarebears.org.  They also have a facebook page where they will send out status posts on the little babies who are having the surgery the next day so we can pray for them and their families.  I now say prayers for those families whenever I see one of those status updates.   In the care package they sent us was:  ribbons linked together each with a prayer or quote written on it, a blanket for Miles, a hat for Miles, socks for Miles, a book for Miles, a journal for parents, toiletries for the hospital stay, tea for the parents, and more.  It was very sweet and they had people through facebook praying for him during his surgery as well. 

And on the home front, we have had incredible support.  Our church, Covenant Presbyterian Church of Naples, has blessed us with prayers and also with meals during the week after the surgery.  We have also had meals from other friends and family here.  Our adult bible study group, Connect, has blessed us with prayers and other supports.  Nick's mom has been a great help in getting Maxon to and from school while we've been home caring for Miles.  My mom is coming down tomorrow and staying a week to care for Miles so Nick and I can go to work. Both of our work places have been flexible with us and understanding with the situation.  We have had plenty of offers to help with any thing we needed from family and friends.  And of course we have had a lot of thoughts, prayers, and encouragement from our friends and family from afar through facebook or over the phone which are so appreciated.  We just feel very blessed with how the surgery went, how recovery has been so far, and with all of the support we've had.  God knows we need it!  Current and future prayers will be for Miles to continue a good and perfect recovery, for Miles' head to grow as it should with the helmet therapy, and for this to be the one and only surgery he needs.

We will post more later!

Turned the corner and headed home!

Good news.  We are home!  Shortly after the previous post, the nurses eased off the heavy duty pain medications and went to using just tylenol with codeine.  That made a big difference in Miles.  He sort of came out of his "fog" and started smiling at us and trying to play with toys.  We call that "turning the corner".  :)  What a relief that was!  On day 2 after surgery he still had minimal swelling, of which everyone was impressed.  The nurses couldn't believe it.  They slowly removed more IV lines from his arms, but they still had to keep the drain in which came from his head, and they still had to monitor his vitals.  Later that day, a resident from the plastic surgery team came in and told us our surgeon said to take the bandages off, take the drain out, and that we could go home.  We were shocked.  Happy, but shocked, and not quite ready for it.  We watched as the doctor removed the bandages.  We were happy to see that the incisions looked pretty much how we thought they would, although to people who don't know what to expect, they do look large and scary.  (I will not post pictures of those incase any of you have weak stomachs).  :)  We could not watch while he took the drain out, but Miles handled it like a champ; one big cry and then it was over.  So although we were happy to have all that done and happy that they said we could go home, we did not feel comfortable just yet to care for him and his incisions on our own.  We requested to stay until the next morning, which they said was no problem.  So that night they moved us out of the PICU and into a step-down room. 

Throughout that night and morning, things just got better.  Miles was playing more, eating a little more, and we were holding him more.  He was also down to just regular tylenol for pain control.  By the next morning, we were confident and ready to go home.  Now that we are home, Miles is great.  He is smiling, and playing with his toys; he is eating better and resting better.  Our focus now is keeping his wounds clean and infection-free and keeping him safe from his big brother.  :)  We will appreciate your continued prayers for that.  Our follow up appointment is September 5 and then we will get his helmet shortly after that.  Here are some pictures of Miles' recovery:
 

Finally out of the "fog".

Sitting with Mommy.

Bandages already falling off, hanging with Daddy.

After bandages removed, with our friend Colleen, who came to visit us a lot and helped keep us sane.  :)

On our way home, happy to see the light of day.

Slowly but surely.

Before surgery in his cute little gown. :)

A few hours after surgery.

Holding Daddy's hand.

Well, Miles has been a real trooper.  The doctors all say he is doing great.  So far, he has minimal swelling, although they say it is usually the worst on day 2, which is tomorrow.  The nurses have kept him on pain meds around the clock so he feels minimal discomfort.  He has been eating a couple ounces of breast milk every couple hours, which is great!  And the next time he is ready to eat they said I could hold him and nurse him, which will be our first time holding him since before the surgery.  I see tears in my future (happy tears).  :)  They were able to take out his catheter and one of his IV lines.  He still has two IV lines and a couple heart rate and respiration monitors hooked to him, but we are thankful each time something is removed.  He had a CT scan earlier today and the neurosurgeon said it looked great with no bleeding around the brain, which is an answer to our prayers.  The cranial surgeon told us that he hopes we can go home tomorrow, but Nick and I are in no hurry.  Although we would love to be in the comfort of our own home and with our other son, Maxon, we are a bit  scared to bring him home and care for him on our own.  :)  I just want him to be a little more himself first. 

So anyway, all is good overall and we are encouraged by how well he is doing.  Now we just wait for the healing process to progress and for things (IVs, bandages, monitors, etc) to slowly be removed.  And we are still waiting on that first smile from him too.  :)  We pray that is soon.