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. 

Recovery

Miles is out of surgery and in the recovery area. We are sitting next to him and he is doing well. He is still sleeping from the anesthesia but did open his eyes a couple times when we were talking to him. The surgeons and nurses said that everything went well during the surgery and that he is doing great. In a little while we will be transported to the pediatric ICU where Miles will stay for a couple days. We will post more as he recovers.

It has been a long day and I'm sure it may be a long night. But, we have felt amazing peace all day and have really felt God's presence here. We also thank God for our assistant pastor and his wife, who are also friends of ours. They came to be with us while waiting for the surgery and helped us pass the time and pray for Miles. God knew that we needed a distraction today!

Scheduled for surgery

Maxon and Miles

Okay if you look at this post and the previous post, there is quite a gap!  Sorry about that; I guess life got busy for us for a while. Anyway, we are doing well, still live in Florida, and now have 2 children. We have our 2 1/2 year old son, Maxon, and our 5 month old son, Miles. It is definitely fun to have two little boys in the house. We are loving it!  And now, here is what is going on most recently:

Our 5 month old, Miles, was born a happy, healthy, and big boy at 8 lbs 12 oz.  Ever since he was born we have noticed that his head was slightly long and narrow. At his 1 and 2 month appointments we asked the pediatrician about it. He told us since his head was symmetrical, just to watch it and it should round out. Just after the 2 month appointment, I took Miles to our chiropractor who mentioned that they would need to monitor his skull shape because some kids who have that long, narrow skull pattern need to have surgery. So we took him each week to the chiropractor for cranio-occipital manipulations. At about 12 weeks the chiropractor mentioned that his head wasn't changing like it should but to give it another month. I went home from that appointment and did some research on the type of surgery for craniosynostosis, which was the skull pattern the chiropractor mentioned. I read that there are 2 different surgeries to treat this, the open procedure or the endoscopic procedure. The endoscopic procedure is only appropriate if the child is under 6 months old. So, after reading that and definitely preferring the endoscopic procedure versus the open, I had Miles to the pediatrician the next day. And from then on, it just got crazy.

The doctor gave us a referral to a craniofacial specialist in Fort Lauderdale. The specialist ordered a CT scan which confirmed the diagnosis of sagittal craniosynostosis. This a condition where the space between the skull bones that runs down the middle is Miles' head, is already fused. Left this way, Miles' brain would not be able to expand correctly as it grows, possibly causing developmental, vision, or hearing issues. The only way to correct this is surgery to remove the part of the skull that is fused and then helmet therapy following the surgery to help the bones shape correctly as he grows. After the craniofacial/pediatric plastic surgeon read the CT scan results, he told us surgery would be necessary and that Miles would be a good candidate for the endoscopic procedure.  So... Fast forward 5-6 weeks and here we are.  That is what we will be doing on Thursday, August 23.

The surgery is going to be done at Joe Demaggio Children's Hospital in Hollywood, FL and Miles should be in the hospital for 3-5 days. We have been through a lot of different emotions the past couple months and have been busy with a lot of doctors appointments. We are thankful that the surgery is finally here so we can get this fixed but are obviously a little nervous. Above all, we know that God is in this situation and no matter what happens he will watch over all of us. We have had a lot of prayers for us lately and have felt an incredible peace so far. We are planning to use this blog to keep family and friends posted on Miles' status as the surgery is completed and as he recovers. Please keep Miles in your prayers; we greatly appreciate it!

Miles

Maxon

Oh my!

Wow, my hat is off to all of you people out there who are bloggers and have children. I set this blog up to keep in touch with family and friends who are far away, but it doesn't help when I only update it every 3-4 months! When I get home from work, it is: cook dinner, eat my dinner and feed Max, do dishes or laundry or both, give Max a bath, play with Max, put Max to bed. By then, I am too tired to do anything on the computer except quickly check Facebook and email. And I only have one child! I know moms out there who have 3, 4, and 5 children who blog constantly. Please tell me, how do you do it? The one thing I cannot do is sit on the computer while Maxon plays - he either comes up to the computer and rips the keys off the keyboard, or I feel so guilty that my face is buried in the computer rather than me spending quality time with my son. Even if I update the blog once per month, that would be an improvment. I promise, I will work on this! :) Anyway, Maxon is very busy now. Not only is he walking and running around, but he is dancing, climbing, and jumping as well. I am finding this to be a difficult stage to keep him safe. He is very quick and has had a few falls already. But, how fun this stage is as well! He tries to talk and say some words, and is getting quite the personality. He wants to be as independent as possible and is definetly learning how to communicate his wants and needs. My cousin, Laurel, gave us a book for one of my baby showers titled, Baby's First Word Book, I think. Each page is a different set of pictures in seperate categories (i.e. "around the house", "toys", "food", "in the garage", "on the beach", etc). Max will go get that book, bring it to me, and point to what he wants. He will point to the soccer ball and then go find it. He will point to the strawberries and then go over to the refridgerator. The other day, Nick did not give Max his breakfast right away and Max got the book, pointed to the yogurt, and cried. How fun that he can advocate for himself now! I know at some point I will wish he didn't advocate for himself so much, but for now I like his resourcefulness.