Wednesday, August 15, 2012

Approaching Surgery...don't freak out

So Luke will be having jaw distraction surgery on Friday morning at 10:30 a.m.  This past week I have gotten a little nervous, gotten really worried about him not making it through (and Kevin gone on errands then they tell me, nightmare!) and now I am feeling okay.  Still a little anxious but at maybe a 1 on a scale of 1 to 10 with 10 being I can't function I am so anxious.  This is really good for me as I tend to worry and I like to plan things and the plan is that we don't have a plan.  Yes, I Emily, am doing okay without a plan.  See we have never been in the hospital with Luke, since the NICU, but for one short visit for tracheits and it wasn't that bad of an illness it was just his first time so we didn't know how to deal with it.  I don't know what to expect from a major surgery on my sweet little one, a week stay, and what I am really going to do with a very mobile 1 year old in a germfilled hospital environment.  I have ideas and some options but nothing solid.  We are just going to see how it goes.

What is jaw distraction surgery you may ask.  Luke will have his jaw broken and then a device installed with little pins sticking out.  No big outside bars and wires (at least if everything goes well).  We will turn the pins a little bit (like millimeters) each day to move his lower jaw out so he will have a normal bite and be able to eat and speak and maybe even help his breathing (its a long shot but the doctors said it happens sometimes when the jaw seems to not be any part of the breathing problems and I believe God can work miracles).  Not that he will eat and speak immediately but we are working slowly on it and you can only go so far when your lips don't close and your teeth do not meet right at all.  Very painful for him and the risks are infection and nerve damage.

We are going to be driving the 4 hours down to the hospital starting around 4am on Friday morning because it is just too hard to have Luke in a hotel room overnight.  We will be checking in for preop around 8:30 a.m. and hopefully be in surgery by 10:30 a.m. and out around noon.

I am hoping they will again allow Kevin to be with him till he is asleep and us to be there before he awakes.  Even if he wasn't a decanulation risk I don't want my poor sweet Luke to wake up with no mommy or daddy  and in a new place in pain.  They were good about it for the CT scan but if surgery is different "mamma bear" is coming out in full force.  I get pretty stressed and uptight when Luke is involved and thankfully Kevin's anxiety level is permanently on 0.  ;)

I am also getting sad about being away from Hannah baby for 3 days.  My parents will have her Thursday night through Sunday afternoon when they bring her down to us.  I am glad she isn't going to be there then as I will not be able to give her my attention and she will be left to the side.  This way she has days of being spoiled and being the center of attention.  Kevin's mom will be there with us as long as we need her (Thank you Nancy!) and will be on Hannah duty during the week most likely.  I have some possible things planned for her but hopefully she will do well.

I got a little sick this week from lack of sleep but am feeling better.  However, I have lots of laundry and packing to do, plus leaving the house ready for a showing as we are still trying to sell it.  It would be awesome if it sold while we were away.  We have already been making Luke food and freezing it so we have enough for the week.  I checked with the hospital and they are okay with us bringing his food as long as we sign something to say we won't hold them responsible if he gets food poisoning or what not.  I overheated the blender last night because I put too much food in at once.  Oops!  For all you blenderized diet mamas out there, Fresh Baby So Easy Portion Storage Bags are great to store and freeze liquids in, they would work for breatmilk too.

Oh you may wonder how Luke and Hannah are doing...
Luke is doing great and doing some imaganitive play and doing more playing and less obsession about book reading!  He is also a lot cuddlier but I think it is mainly jealousy of Hannah.  Luke is just doing good and improving with his play and communication skills all the time.  He also knows maybe 40 words by sight.  This kid is smart.  I feel bad that his communication is so limited.  I still haven't gotten to revamping his iPad communication program but maybe that will be a good task for when he is in surgery.

Hannah is everywhere!!!!! and into everything and just crazy Hannah.  She is eating table foods now but I am having a hard time as she won't eat everything I put in front of her.  She wants to feed herself but hasn't mastered eating with a spoon and will only let me feed her sometimes.  But she doens't have enought teeth to eat that much stuff and so veggies are hard to get into her.  And she cries, no whines, if you don't share your food with her.  Luke is so easy, he eats what you give him and it doesn't create a mess.  I am having trouble with trying to giver her the good complete diet that Luke has but I know in my mind she will not eat that well.  And the mess, oh my the mess.  She eats naked most of the time, I am not sure what I am going to do come winter.  She will only wear a bib once in a while so my options are limited if I want to keep the same outfit on her most of the day.  She loves to play instruments and her and Luke will play the xylophone and drum together, very cute.

So please pray for us as you feel led but here are some specifics if you would like:

1.  Luke would go through surgery well.
2.  Luke would not have any nerve damage and not get an infection or
other complications.
3.  That we could deal with having to be with Luke 24/7.  At home we
have night nurses I trust but in the hospital I stay with him as I
don't know the nurses and they are in charge of more than just Luke.
4.  That Hannah and I would do okay without each other for many days
and not seeing each other much when she is with us.
5.  That I would continue to do well with the unknown that this all
is.  Luke has never been in the hospital for more than a minor
sickness and it was once for a few days.
6.  That Kevin, Hannah and I would stay healthy.

Here we go...into the surgery unknown...


  1. I just prayed for you all. Good luck with everything!!

    1. Kevin, Emily, Hannah and most importantly Luke! I am sure you are all experiencing your share of anxiety and concern. that is something we as parents accept as part of our parental role. As difficult as it may seem, and I promise you there will be 'ok' moments and the 'its not ok moments' but through it all you have to hold on to God's promise of leading you through all trials and tribulations. He promises you to always be beside you and we are not going to allow doubt to overshadow that promise. I pray that God sends his Angels ahead of Luke and the surgeon, that they carry him on their wings and that He delivers Luke safely into your arms.

      All will be well. Trust and obey!

      best regards, and my prayers are with you all.

      thumbs up Luke!

  2. You are all in our prayers here in the Spalding House! We will keep you in our prayers for safe travels too! Being away from home that long is hard enough... let alone for the reason of surgery of your sweet child. May you feel God's embrace through this entire journey! Blessings, Maria

  3. Hi Emily, I am really excited to have found your blog. My daughter Zoe also has Moebius, and we don't know anyone else who has it. I will certainly be praying for your family on Friday and through the weekend.

    Here is the link to our blog: