Post op updates

    Hey guys!  I may sound like a broken record to those of you who follow me on social media as well as here. Anyways surgery went well. I was able to calm myself the day before and the day went relatively smooth. After surgery in post op her O2 stats kept dropping and she had to go on oxygen, but they were able to  get it under control. This worries me a little about the next surgery (she will be having a few more on her lip, heart etc.) But the soonest surgery will be the end of this summer so I don't need to worry quite yet. With CHARGE and surgery, they have found each surgery becomes more and more risky. This was her first complication, small thank goodness but a complication nonetheless. So with what's stated above its why im so concerned for the next. In this surgery they also lasered her lip and replaced her left ear tube at the same time. We were sent home with a bag full of meds. They accidently had us putting drops in the ear they put a tube in vs. the surgery ear. 3 days post op her surgery ear was gushing blood and dripping down her arm so we brought her in. Turns out we were supposed to be putting the drops in the surgery ear! ugh! anyways glad it was an easy fix! Celina was a little feisty and clingy out of surgery. Which was to be expected. There were some days I couldn't put her down at all. Its like she would get a look of  panic and cling desperately and try to climb up my legs to be back in my arms. I felt so bad! Needless to say I had quite a sore arm and neck for a while. Not to mention nothing got done. Anyways! Today shes doing great!! May 5th we have her post op to get cleared for activation, and may 11th we get to turn this baby on!!! So excited!! the weeks seem to be dragging! I cant wait to see her react to all her toys when she realizes they all make noise! It'll be like she got a whole bunch of new ones!
   So with cochlear's there comes speech therapy and brain mapping. Her activation day they will be doing a bit of the mapping, and then again on the 25th of may. we will be doing Speech once a week in the cities as well. We also had some outpatient PT (physical therapy) and OT (occupational therapy)  Evaluations. Some of the results were hard to see. Celina is on the level of a 7 month old in some areas and a 9 month old in others. Needless to say we will be adding both OT 2X a week and PT 2X a week to what we already have. Thats 8 sessions a week! Kind of makes you wonder when shes supposed to just act like a kid. At the same time tho I understand why its needed. We hope to get this girl walking by the end of the year! Id be happy with her even standing independently. Speeking of standing, we're waiting on her to do that in order to get a good x-ray of her spine to get an exact on how bad her scoliosis is. So I'm really pushing for it. Anyways!! Thats all I have for now! Thank you everyone so so so much for your thoughts and prayers! and thank you for including Ryan, Eli and I in them as well. We needed them as well! My next update should be a video of Celina getting her CI turned on! Stay tuned! :)

After surgery

She hated her headwrap

Before surgery

Waiting on Tomorrow.

      Tomorrow is here. Tomorrow is the day! Celina goes into surgery for her implant. So incredibly nervous, excited, sad, giddy, all the emotions balled up into one person. I don't know if I should laugh, cry hysterically or both. I cant do either or anything for that matter. Trying to get things done I end up walking aimlessly in circles around my house. My nerves are at end. The feeling of nausea has turned to actual vomit. So I'll take to writing instead. Im literally shaking. The tears are creeping thru occasionally. I don't know if they are happy or sad. I guess it doesn't matter. They're just there. Where is my strength? My faith? I desperately need it. I've had it every other time shes gone under. Why does is this time so hard? Celina's entire world is going to change. Just by one little sense,
that we all have, being turned on.

    Celina goes into surgery tomorrow morning at 7:45 am. Due to her CHARGE Syndrome and the anatomy of her inner ear being so messed up, they have allotted a little over 5 hrs for her surgery. One that usually takes 2hrs for a typical child. 4hrs for both sides in a typical child being implanted. They have 2 doctors performing the surgery. Again a typical surgery would only have one. Only 2 people are allowed by her bedside at a time. Those visiting will have to take turns. Im lucky to have family members of mine and Ryan's coming to support us during the surgery. I need this support. Im going to need the distraction as we sit and wait for 5hrs. If anyone would like to come sit with us, you are absolutely welcome. Eli will not be allowed in her room. No kids under 5 due to cold and flu season. Eli has an awesome auntie B who is going to get him off to school and then after bring him to come wait with us. I'm so thankful. I know he would be restless sitting in a waiting room for 5 hrs. This way Ill have my Eli to snuggle with for a part of the time, and he doesn't have to sit and wait with us for so long. Always hard for little boys full of energy. Also we will be sent home that day if everything goes well. I had originally been told it was an overnight stay. Going home so soon makes me nervous. As a friend pointed out, she can't communicate if she's feeling off. I would feel so much more comfortable staying, Just in case. I think I'm going to pack an overnight bag anyway and voice my concern to the doctor. Also due to Celina being on thickener for her liquids, she won't be able to even drink anything past 10pm the night before. This is because they consider thickener in her liquids a 'solid food'. I'm going to have one cranky baby tomorrow.

   I'm in a fantastic CHARGE group on Facebook. A few of them actually. Where we are able to ask questions, vent frustrations, ask for prayers, give updates etc. It seems lately we have lost so many little CHARGE babies and children in our group. Not long ago one was due to complications after an implant surgery. This hits so close.  Please pray. If you don't pray, just think of us please.

    We got back from A wonderful vacation this week! It was a perfect distraction. Both Eli and Celina loved it. No better way to calm the nerves than the beach and sun. I don't think I thought about her surgery until the way home. I mean I thought about it, but just in quick passing. No nerve jangling thoughts. But! Now the day is nearly here and there's no avoiding the nerves. Writing this has helped immensely. The nerves have subsided to a small jitter vs. a large quake. There is strength in numbers. The more people thinking of us and praying for us the better. And I know soon, when I post this, many of you will be. And I can feel your thoughts and prayers. I really can. It comes in waves of strength. Gods will be done.