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: