Tuesday, April 5, 2011

time can heal

So we didn't get the "don't worry about it, everything's fine" report that I was hoping for.  But things could be much worse.
The Physican's Assistant came in first.  She was very kind, and it was comforting to see her interact with Adeline and Nile.  But she jumped right in with talking about a second surgery.  She commented on how nice and round the back of Adeline's skull is, but also narrow the front is.  She said, "She just might be one of those few that does need a second surgery on the front."  It's difficult to remember anything she might have said after that. (And the fact that Nile was scaling the exam room furniture like Spiderman didn't help my concentration either.)
As soon as she left the room I looked at Aaron and said, "Dr. Puccioni will come in here and say something completely different."
I was somewhat right.  He came in and played with Adeline a little.  He commented on her chubby cheeks and big blue eyes. I'm sure he knew I needed some sort of sedation - and nothing eases your mind like hearing how beautiful your baby is!  He told us that she seemed very happy and healthy.  And we agreed.  We talked about the difference in her personality and comfort level since surgery.  She sleeps well, laughs all of the time, and is always exploring.  He talked again about many babies don't experience the pressure on the brain like Adeline did.  And how pleased he is that she is doing so well now. 
And then he examined the front of her skull.  He told us that her temples are still "pinched".  Her head is growing from front to back, but isn't expanding from side to side. But the fused suture that they removed went all of the way to the front of her skull, and the opening they created by removing it was still there.  And that is good.  As her brain grows it should force her skull to widen.  And that may take time.
He wants to give it a year post-op and see how it looks then.  He reiterated that he would never do a second surgery less than 9 months after the initial surgery.  So we won't plan on seeing Dr. Puccioni again until early next year.  Wow.  If she starts to show signs of pressure - becomes inconsolable, wakes frequently at night, change in appetite - we are to contact him right away and he will order a CT scan.  He said at least we know what to look for since we have already experienced it.
We will continue to see her Craniofacial (Plastic) Surgeon, Dr. Miller, at least a couple of times before next year.  And they will always communicate with each other. So the appointments with him should help ease my nerves and allow me to ask the crazy questions that my mind will create in the meantime.

I guess this is just another test in life.  Nine months is a long time to wait  - I've done it before, twice!  And both times I was blessed.   How will I spend this time waiting?  Will I drown in the what-if's and nightmares of what could happen? Will I grow angry and resentful? Or will I remember how lucky I am and spend this time loving and appreciating and learning from my beautiful children (and husband!). And giving praise to God for all He has blessed me with?  Will I allow God the time needed to heal Adeline? Or will I try to take control of the situation myself by contemplating and obsessing over that little (not so round!) head. I'm sure I will do a little bit of it all - worrying is one of my "finest" qualities. 

Now I will focus on praying for Adeline's head to grow as it should.  I will pray that she will continue to be healthy and happy and full of curiosity and everyday surprises.  And I will pray that God will give me the courage to let go and let Him do what He needs to do.

It used to drive me crazy when I would cry to my dad when something absolutely horrible would happen in my life - like when I'd get into a fight with a friend, or wouldn't get the grade I studied so hard to get, or when my sister wore my shirt without asking.  And instead of making it all go away...he would tell me to say the Serenity Prayer.

Well, God you will be hearing these words A LOT from me these next nine months!!!

The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.

--Reinhold Niebuhr
(thanks dad!)

Monday, April 4, 2011

perfect timing

We've had a wonderful month of laughing and cuddling and growing (even hair!) and breezing through milestones.  Adeline is a happy, fun, and very busy little girl!   She's babbling and repeating some sounds - if she sees Pete, our cat, or if you ask her her what a kitty says she hisses! She says "Hi!" and "Oh, Oh," (and loves to play the "drop game".) She patty-cakes, loves peek-a-boo, and throws her arms in the air when you say "Soooo big!"  She's cruising the furniture, and walls, and doors...she will grab onto anything she comes across and will pull herself up for a better view.  Anything that we carelessly leave on the coffee table will be inspected and then thrown to the floor.  And if there is one itty-bitty piece of anything left on the floor she will hunt it down and put it in her mouth.  She is surrounded by baby toys but prefers anything electronic, or anything her brother wouldn't want her to touch.
Basically, she's a normal, healthy, happy, and curious 10 month old girl.  And we cannot even begin to express how grateful we are for that.

We've had one small set-back.  I (along with our daycare provider) have noticed that Adeline's head isn't as round as it was after surgery.  Her head is growing, but it seems to be becoming elongated again.  I took her to a follow-up appointment because she was put on a nebulizer for wheezing, and I mentioned it to the pediatrician.  I was hoping the pediatrician would say that she thought it looked fine, and not to worry about it.  But she didn't.  She asked when Adeline was going to be seen again by the craniofacial doctors.  Long story short, Adeline's April follow-up appointment with her neurosurgeon was moved from the 19th to tomorrow. 

I am sure that we are all overreacting.  I am sure that the neurosurgeon will say that everything is fine - it has been only three months since surgery - she has a lot of time for her head to "round out" again.  They said from the begining that they wouldn't even consider a second surgery until 9 months post-op.  But I can't help but feel that nagging "mommy instinct" that I tried to ignore when I first noticed that Adeline's little head wasn't normal.  And to be honest, I don't like it.  After Adeline's surgery I swore that I would never put her through that again.  That no matter what, that horrible week was not worth it.  But now that I know how much it has helped her - now that I know how much she was suffering the couple of months before it - now that I know what could happen if we didn't allow the surgeons to release the pressure on her brain and reshape her skull - I know I have to put my selfish fear aside and trust that God will guide the surgeons to do what they need to do.  But, God, please tell me we are all overreacting.

So as I was getting Adeline ready for bed tonight I spent a few extra minutes kissing that little (not so round!) head of hers.  And I told myself not to become obsessed with the what-if's.  And God sent me the perfect little gift, at the perfect time.  An amazing "cranio-mommy" created a Craniosynostosis Awareness video with pictures of beautiful children wearing headbands and "do-rags" that she made and sent to each family.  I have to admit, I didn't get past the first 10 seconds of it - I started bawling and had to shut it off!  But I am going to force myself to stomach it before I go to bed tonight. 

The link is to a Facebook page, and I don't know if it can be seen outside of facebook, but it is worth a try.
Avery's Angels Awareness Video
I am hoping she will post the video on her webpage http://www.averysangels.net/ so it can be seen by anyone.

Godspeed baby girl.