Wednesday, December 26, 2012

Good news is.....

I was just sitting here re-reading old posts.  Sometimes I just have to do that.  Its hard to believe that its been 7 months.  But, in some ways it seems forever ago.  Does that make sense?  Good news's behind us.

Last week I received an email from someone who came across my blog, G.  She was waiting to hear back from a plastic surgeon in NC about the results of her daughter's catscan.  She was inquiring about where we had the surgery and asking for any insight I had.  I was happy, AM happy, to help anyone who may have just started their own cranio journey.  The good news is....she didn't need my help!  The surgeon ruled out cranio after seeing the scans.  Congrats G!!

In my last post, I mentioned Mallory's delay in her expressive language.  At her appointment in November, the pediatrician and I agreed to wait 2-3 months to see if her rate in learning new words increased at all.  Good news is.....she learned a new word this week.  Bad news's NO.

Last bit of good news more week left of Christmas vacation!!

Happy New Year's everyone!

Saturday, November 17, 2012

All is good!

Our last visit with the surgeon went well- extremely well.  Mallory's noggin is perfect.  Well, according the doctor.  You can still see the "screws" and the lumps and bumps are still there but according to her that just takes time.  The way she explained it is that Mallory's body is fighting this foreign substance so there is some swelling in the area of the surgery.  As the screws begin to dissolve, the swelling will go down.   The only worry that we (parents and doctors) have at this time is her delay in talking.  In the last 2 weeks I have noticed a few words so I am hopeful that she just needs some extra time.  We will be looking into this soon.
A few people have told me recently that they continue to keep up with my blog.
So, thank you to those people.  And to anyone else that has come across this blog.  I appreciate you keeping up with our sweet Mal and her journey.

Saturday, October 6, 2012

Surgery- what surgery?

We are more than 4 months post-surgery and it seems like so long ago.  It's strange- something that was such a MAJOR part of our life only half a year ago is now something I barely think about.  Sure, I have the little screws sticking out of her head (hhhmmm....Frankenstein for Halloween?) or the remaining scabs on the incision to remind me but with all the action of our daily life those things go unnoticed.
The first few days after getting rid of the helmet were interesting ones.  Mallory didn't realize that when you had a tantrum on the floor and threw your body down, it actually hurt to have your head hit the hardwoods.  Only took her twice and now she does a slo-mo tantrum until she is completely on the floor and lets loose.  Within 3 days it was life as usual.
We have another follow-up appointment in 2 weeks- I am positive we will get good news.

Thursday, August 23, 2012

3 month surgiversary!!

I remember thinking how long 3 months sounded and here we are!  Technically, we could take the helmet off today but we decided to leave it for one more day.  This is Mallory's first week back at daycare so I am sure she is all over the place.  We will take the helmet off tomorrow night- yay!  I will report back to let everyone know how it is going.  I am sure it will be an interesting weekend.  She is so used to having a helmet that she throws her head around and walks into things and has no knowledge of the consequences.  She will find out soon enough.......

Tuesday, July 24, 2012

2 months out

Yesterday was the 2 month anniversary of the surgery.  That means 2/3 of the way through the helmet wearing.  Mallory is doing extremely well.  Its like nothing happened.  The only clues are the large pink puffy helmet on her head and the zig-zag incision through the head.  Well, okay, those are pretty big clues but looking at her daily life you would never know the trauma she went through only 2 months ago.  Today we had another follow-up appointment.  Her surgeon said she is healing perfectly both inside and outside.  The bones should be set very soon so in one month time the helmet is gone!!  YAY!!  Really, the helmet hasn't been such a big deal.  She sweats more but it has helped while she learned to walk.  I know she will be excited to get rid of it.  When I take it off for baths she just sits there and rubs her head.  Too cute!  She is growing up so quickly.  She is now walking, attempting to run, and has started talking.  Words include: dog, dada, thank you, and bird.    She also understands so much of what we ask her to do.   Sniff- sniff- so sad knowing she is my last one.  Here is a picture of our family portraits taken a week ago.  Can't even see the incision from the front!
  Her next appointment is 3 months from now so hopefully we will have nothing new to report for a while!!  Thanks for reading.  Enjoy the rest of your summer.  We hope to do the same.

Wednesday, June 13, 2012

It's been a while....

Hello everyone!!  We had our post-op appointment 9 days later and the doctor was very happy with how things were healing.  She commented on the swelling but the incision looked great.  We tried on the smaller helmet and her head was still a bit swollen.  We also talked about our little Houdini- she is able to pull out the mesh covering while the helmet is still on!!
Her recovery has been amazing!  She is moving around like nothing happened.  At this point, the swelling has gone done and the incision looks good.  We are now in the smaller helmet with nothing underneath.
I remember reading that one of the hardest things about the surgery is seeing a new head shape and seeing how different your child looks.  I can't lie- it has been strange.  Her face is just not hers....but it is gorgeous- just the same as it was before.  Damn- I love that girl.  She has been through so much but just keeps going like nothing has happened.  She doesn't even try to take off the helmet!!   Only about 2 more months- yay!!

Sunday, May 27, 2012

We're Home!!

We got the go ahead Sunday morning (4 days post-op) to go home.  So exciting! One of the doctors came and changed Mallory's dressing and put her in the helmet.  He explained how to change her dressing every morning with antiseptic strips and gauze over that.  We will probably have to do that for about 2 weeks.  She will be in the helmet for 3 months until the bones are in place properly.  There are dissolvable plates holding everything together.  They will dissolve in 12-18 months.  Amazing, isn't it?  We signed all the papers, got our prescriptions and we were home by 10:30 am.  Overall, it was a great day- she took a 3 hour nap and is taking only regular Tylenol for the pain.  I know she was thrilled to be out of a crib and moving around.

As for the rest of her recovery- we will be resting at home for the next 1.5 weeks.....just the two of us while everyone is at work and school.  She will wear the protective helmet to keep her head safe.  We will be going for follow-up appointments at 10 days, 6 weeks, 6 months, 12 months and every year after that until she is a teenager.

This has hands-down been the worst week of my life.  But I can honestly say that the anticipation was so much worse.  Everything went extremely well- better than can be expected.  An amazing friend of mine was shocked by how quickly Mallory bounced back from all of this.  She explained that Mallory was "her hero".  Since then, I cannot get the word hero out of my head.  I have SO many heroes after this week.  To name a few:

Mallory- first and foremost......She has been a champ.  Way better than I would be!   Well, better than I have been after my own surgeries!!

Dr. Lisa David of WFBH- Plastic Surgery -  She is amazing!  My child's life was in her hands and she "walked" away 4 days later........what more can I say?

Lauren - my cousin who so willingly donated blood because Kit and I were unable to.  Mallory did in fact need a transfusion during the surgery and we are so thankful for your donation.  I love you!

Our parents- as I said in an earlier post this surgery was more stressful because of the two that I had home.  All 4 of her grandparents were so helpful and completely took over the care of Kaitlyn and Lauren.  It helped so much to know that they were taken of.

Kaitlyn and Lauren- my 2 oldest sweeties were so good during this time.  It was hard for them to see Mallory and I go for 4 days but from what I hear they were great!!

Kit- the little things you did for me meant more than you know.  Seeing you with Mallory and the love that you feel for her remind me why I fell in love with you in the first place.

Friends and family- so many of you have gone above and beyond during this time.  Thank you so much!!  We could not have gotten through this without you.

I am sure I may have a post here and there as time goes on simply to finish up on this Cranio journey.  But for now, you are up-to-date.  I kind of like this blog thing though......

Hhmmm.....maybe Working Mom Stays Home with 3 Kids Over the Summer?   More of a comedy than the drama genre.

Stay tuned!!!!!!

Saturday, May 26, 2012

3 days out

Sorry for the delay in updating.  Things have been going so well.  The doctors and nurses have all commented on how well she is recovering.  Today I am going to chronicle using pictures.

Resting peacefully yesterday- 2 days post-op

 Getting her dressing changed and draining tube out

 First time I got to hold her:

Final nap of the day on Friday at the PICU

Breakfast 3 days post-op!  Swelling down and she ate banana and Cheerios.

Going for a walk

Getting some fresh air on the rooftop

Friday, May 25, 2012

Day 2

I had every intention of updating last night but as soon as Mallory went to bed, I went to bed!!

Ok- was overall a pretty good day.  Her surgeon came in the morning and said all her vitals looked good and she was ready to move to a regular floor.  We were released from seeing the respiratory therapist which was another good thing.  Mal was up on and off throughout the day.  She was still in some pain but definitely better than the night before.  She was running a fever all day- about 101.  This is a normal effect of the surgery but I know this added to discomfort.  She was on her painkillers all day which helped her to rest.  Both Kit and I were able to hold her for a while.  She took a little nap on us-  heaven.  We waited all day for the move and were finally told that there were no beds available :(  Boo- I was ready for a calmer, less depressing floor.

But- I think God may have kept her here for a reason.....our night nurse was amazing!!  She was so knowledgable and fabulous with Mallory.  She changed a bunch of things with her medicine and apparatus that made her so much more comfortable!!  We both had a much better night.  Of course, we were still up every 2 hours when it was time for her morphine but only for a few minutes and we would back snoozing.  Ladies- reminded me of the post-partum floor.

I held her again this morning for a few- so sweet.  She is on a bunch of different meds- all just to help her feel better.   The doctor came this morning and took the draining tube out of her head and changed her dressing.  She looks different because of her new head shape but still absolutely beautiful.  The incision looks good and not very noticeable since they kept her hair.

Our only concern is she won't drink anything.  They did give us the okay to give milk and she took a few sips before she passed back out so hopefully she will pick it up today.  Until then she will need to continue with the IV.

That's all for now but I have to share this picture-  Lauren made this card for Mallory to bring to the hospital- and yes, I cried.

Thursday, May 24, 2012

One night down........

Statistics for the evening:

1,500,555 beeps from all the machines on the floor
400 visits from the nurse (or at least it felt like it)
5 doses of morphine
3 hours of sleep
2 bouts of vomiting

and a partridge in a pear tree..............

Wednesday, May 23, 2012

Surgery Day

Good morning!  I know that several people will be checking the blog today to stay updated so I will try and keep you posted throughout the day.  Instead of creating a new entry each time I will just add to this one.

We arrived this morning at 7:00 am.  It was so hard leaving the older girls at home and I know it was hard for them to see us go.
They called us to back around 7:30.  They checked her vitals, we met with the all the doctors (there are tons of people involved today!), and they gave Mallory some of that "drowsy juice".
They took her back right at 8:30.  The tubes are first so I am sure we will hear something soon about that.

Sorry- I haven't been good at updating.  The surgery is all done.  Doctor said everything went as expected- no complications.  Thanks so much for all the well wishes and prayers.  We get to see her in about 30 minutes.

Things have been going well since my last update.

At about 1:20 they called for us to come back.  When they wheeled her out of surgery she looked so much better than I thought she would.  I am not sure what I was expecting but she looked good.  She was sucking so hard on the bottle of sugar water no one had to hold it for her- it was just sticking out of her mouth!  It was too stinking cute.

They took her to a room where an immediate team of doctors and nurses came in for the exchange.  There were a lot of medical terms being thrown back and forth......I was starting to feel like I was on an episode of Grey's Anatomy!  But they were very thorough and explained what the rest of the day would look like.

She has basically been sleeping the day away as a result of the surgery and with some help from morphine of course.  I haven't been able to hold her yet because of all the tubes and the arm splints but once we are released from the PICU tomorrow and moved to a regular room I can hug my baby again- can't wait!!

I will make a new post tomorrow and let you know how she is recovering.  Thanks for reading!

Here are some pics:  Pre-surgery on the drowsy juice and wheeling out of surgery- too cute right?

Thursday, May 17, 2012

1 year old!!!

I cannot believe it-  Little Miss Mal is a year old today!  So sad that she is not home with us- but I know she is in good hands.  I made a video of the girls singing "Happy Birthday" and sent it to her.  I heard she was dancing to it.
We received a care package today from an amazing organization-  Cranio Care Bears
Tons of stuff for Mallory, Kit and myself for the hospital stay- I can't thank them enough!!

First day at the beach
6 days and counting...........

Monday, May 14, 2012

9 days out........

I remember when we scheduled the surgery it seemed so.far.away!!!!  And here we are.  Things have been busy but going well.  In typical Anderson fashion, Mallory had 3 ear infections within 2 months.  Her pediatrician gave us a referral for an EENT- shock, gasp- ha!!  Nope, just shocked she was almost a year before it happened.  But the good news is- their office has been amazing!  They have scheduled her referral for Monday, May 21st and if she needs tubes they will do it during the surgery on Wednesday.  One less time under anesthesia is fine by me.  I am so grateful how easy they have been to work with.

We spent the weekend celebrating Mallory's first birthday at the beach.  It was a nice small intimate party. Very relaxing and a good time.  Mallory seemed to enjoy the day.  Well, for those who know Mallory well, she enjoys every single day.   She is the happiest baby!!  And I am one happy mom now that she finally has decided to sleep through the night!!! Yes, you read that correctly.  She was still waking up once a night at 11.5 months.  I think it was paybacks for bragging about what wonderful sleepers I had with the first two.  

My stress is starting to rise...the planning of the next week or two is the hardest part.  When you have 3 kids its not just preparing yourself for surgery but preparing for surgery AND everything that the other 2 children will need while you are out of commission.  This week Mallory is with her grandparents at the beach- quarantined from the germs! :)  A special shout out to my mother-in-law for emailing me Mallory's daily happenings.  It helps me stay connected.  Her birthday is Thursday- so sad not to be with her but know she is in good hands!

I will be back on next week:
Monday- EENT
Tuesday- Pre-Op
Wednesday- Surgery

I will keep you posted.
Thanks for reading :)

Monday, April 30, 2012

First MRI....

While sitting waiting for them to finish the MRI today I was many times have my 3 daughters been put under sedation?  I think the final answer is 10.  10!  That's crazy.  But today was hard- it was our longest procedure.  Which only reminded me how long surgery day will be.

Mallory and I got there at 7am.  No food for either us (boo!).  They asked about medication and I explained that she takes none.  We finished an antibiotic on Thursday for an ear infection but other than that nothing.  The anesthesiologist (sp??) came in and asked the same.  She was a little worried about Mallory's runny nose but when they listened to her lungs they were clear- so it was a go.

What was supposed to be a 45 minute procedure turned into a 1.5 hour one.  Thankfully, I had the drama of the others in the waiting room to keep me focused!!   They called for me to come back.  The nurse bringing me back said "She is so cute.  She is sitting there smile at us."  Yup!  That's Mallory.  That is just who she is.  Such a doll baby.

I had a long talk with the anesthesiologist.  Turns out, she had some difficulty breathing.  She needed a breathing tube and they ended up changing it once because there was so much mucus.  The doctor said she was definitely sick- lots of green mucus- and that we needed to focus on getting her healthy before the surgery 3 weeks from now.

Which leads us to the next decision.  We took her out of daycare.  Friday was her last day.  Thanks to fabulous grandparents we are able to do this.  Surgery is scary enough- we don't need the added stress of a sick child.

Another big decision today....we told the older girls about the surgery.  Over the next few weeks, we have quite a few people helping us out and we will be in and out of different places.  I wanted the girls to understand why things are changing.  Lauren had a hard hurts her to know Mallory will be hurting.  Which in turn, hurts me :(  May is going to be tough.  I hope the next month moves very quickly.

Tomorrow, one of our fabulous donors is giving blood for the surgery.  Thanks again to the RED CROSS for organizing this.  Then, we are ready.   Well, once Mallory is healthy.  I guess the doctor was right.  She IS sick.  Tonight she is running a 101.4 fever.  Glad we took her out of school!  I apologize to anyone coming will be sanitizing before entering!!

I am ending this post with a quote I found another website:
    Approximately 216,000 babies are born every day in the world
    There are 24 hours in a day = 9,000 babies born hourly

    2,000 are born affected with Craniosynostosis
    In a 24 hour period, 108 babies could be born with Craniosynostosis
    Approximately 5 babies are born hourly with Craniosynostosis

    How is it that I don't know more about this condition?

Damn........I knew I should have pushed one more hour during labor.  She may have been one of the 103 if I kept going.

Tuesday, April 17, 2012

11 months old today!

I cannot believe it has almost been a year since Mallory was born!  Time flies when you are having fun.....and busy, overwhelmed and running like a hamster on a wheel :)  That's just life with 3 kids.  So, last night I bought my last can of formula------EVER!  That's crazy.  Soon it will be the bottles.  Mallory is doing well- growing fast.  She is pulling up on everything and cruising around the room.  She is crawling after the girls trying to keep up and starting to say a few words- "dog" and "what's that" for sure.  Her hair is growing in and has the slightest curl at the bottom.  Makes me sad to think they will have to shave that soon.  I hope the curls come back after that.  The MRI has been scheduled- Monday, April 30th at 8am.  We will keep everyone posted!!!

Sunday, April 8, 2012

Ok......where was I?

First, let me start off by saying I am writing this post outside while enjoying a Bloody Mary on this gorgeous Easter day!  Happy Easter everyone!!

Ok, where was I?  The day after we received the diagnosis I was in a complete fog.  I couldn't focus on anything at work.  I am such a planner- in all aspects of my life- so my mind was just reeling.  The problem is so much of this situation is out of my control.  Maybe this experience will make me a better person- teach me to relinquish some control.  Well, that night, about 7pm,  Kit's phone rang.  I could hear our surgeon tell him "Hello."  She was wrong I thought!  She looked at the scan again and she doesn't need surgery after all.  Umm- nope.  The neurosurgeon looked at the scan.  He found a small cyst in her brain that she missed.  Oh-great!  Thanks...anything else you want to throw at us today?
Good news is these cysts are quite common and are benign (think ovarian cyst, ladies) but since they did in fact find it and she is a child they want a baseline of the cyst so they can monitor it.  We have an MRI scheduled for later this month.

The following day we heard back from the lab- neither of us are a match for her blood type.  While donor blood is perfectly fine and are more than happy to use it, we did decide to first reach out to our immediate family to find a donor.   We are so thankful to everyone for getting tested and looking into this for us.  And we are extremely grateful for two of our family members who are matches and agreed to donate for us in case Mallory needs a transfusion during the surgery.  Thank you, thank you, thank you- you know who you are :)   And I also plan on thanking the Red Cross with some kind of donation- they completely organize the blood donations and ship it many miles for us.

So now, we wait.  We are more than thankful for the prayers, cards, kind words, and offers for help we have already received from family and friends who know about the surgery.    You will all be what gets us through this- that I am sure.

Our Disney trip last week came at a perfect time.  We were way to busy for me to dwell on the upcoming surgery.  This next month is extremely busy for us so hopefully it will help to keep me focused on other things.

I will keep you all posted as things progress and get closer.

Again, Happy Easter from Mallory and the rest of the Anderson Family!

Saturday, April 7, 2012

Trying this blog thing.....

      Most of you know what an internet freak I am.  When anything new comes my way (ie marriage, conceiving, pregnancy, birth, etc) I will search google for months!  Hard to believe I have never tried this blogging thing- but here it goes.  With the emotional roller coaster I started just two weeks ago I thought this might be a good way to sort my thoughts AND keep our family and friends posted.
     Well, to get everyone caught up- this journey of ours started February 23rd at Mallory's 9 month well-check when the pediatrician agreed with Kit that Mallory's head shape was a little abnormal.  She referred us to a pediatric plastic surgeon.   I prayed every night that her head was just BIG for the next 2 weeks until our appointment.  The surgeon agreed that something may be wrong.   She considered that it was a result of head positioning but since Mallory was a stomach sleeper things didn't seem to line up.  She felt that the sutures on the back of her head may be closed or closing.
     I continued to pray every day for the next two weeks until our scheduled CT scan.  We woke up bright and early to get there for our 7am appointment.  The poor girl couldn't eat because she would have to be sedated for the procedure.  The scan itself went well- she was out maybe 10 minutes and they got the images they needed.  Only 15 minutes later she was eating a sausage biscuit- ha!  She LOVES her food!!!
     Over the next 2 hours or so my stomach was in knots while we waited for the results.  Dr. David finally came in and revealed the scans.   We looked at the images of her head and I was thrilled to see the sutures on the back of her head were open and then she continued turning the images to reveal that the side sutures (coronal) were partially fused on both sides.  Diagnosis: Bi-Coronal Craniosynostosis.  Huh?!?!  I was very confused and for those of you interested in learning more here are a couple of good websites on this condition:
CranioAngel Network
    In my head all I could think was "partially fused- maybe that means nothing." until she said, after some time looking at the scans, "The way I see it- surgery is the only option."  The worst case scenario from our original appointment.  It broke my heart thinking about little Mallory going through this- still does.  But I know it has to be done to be sure her brain grows correctly and she develops normally.
     We spent the next couple of hours scheduling the surgery and getting blood types tested for Kit, Mallory, and myself to be sure we have donor blood ready for the surgery.
    It was an extremely exhausting and emotional day and I have more to share that has happened since then but I think this is enough information for now!  Thanks for reading....if you got this far!

About 1 week old: