At first I thought our "new normal" would be living life with lissencephaly, developmental delays, and seizures among other things. But what I didn't realize is our "new normal" is just that a new normal all the time LOL. We are definitely living day to day wondering what new thing will pop up for us to adjust to and add to our life like no big deal. Well two and half weeks ago Emma had to have surgery to place a G-Tube due to silent aspirating her liquids. Our hearts broke as we came to this realization. This was a must because who knows when it would turn to aspiration pneumonia and then we will be in big trouble. So with tears in our eyes and heavy hearts we decided a tube was going to be the safest thing for our little princess. One thing that hurt the most was the fact that she was gaining weight like a champ and she LOVES to eat. She was so excited every time she seen her bottle and she just started to help hold it. The good news is that we haven't had to take away all of there food orally just the liquids. She is still able to have pudding think solids, but we will retest this in about 2-3 months to make sure this is also still safe for her.
Oct. 18, 2016
Right before surgery letting us know it's all going to be just fine
This was surgery day and we were so worried that after all that fight to get insurance to approve the surgery so fast that Emma was too sick to do the surgery. Flashback to the night before surgery......Emma started coughing and was the most congested I had heard her in a long time, my heart sank knowing how badly Emma needed this surgery and the possibility of having to wait 2-3 more weeks could result in pneumonia. I called the morning of surgery explained to the nurse my concern and she said bring her on in and they would assess her because that coughing could be from aspirating and not necessarily a cold or illness. To be honest that never crossed my mind so we packed up and headed to the hospital at 6:15 AM. A HUGE thank you to my sister who came and got Ava to and from school for the 2 days that we were unable to be there. I was so nervous about how Ava would take it all but she handled all really great thanks to her Aunt Amber, so thank you so so much!
Emma right after surgery holding on to daddy tight
Once we arrived at the hospital 3 different people cleared her for surgery. We were so nervous and scared for our little baby to go off without us, especially with people she didn't know. Luckily Emma has fallen asleep right before we had to hand her over and she slept as they took her away. Our eyes swelled up with tears but we knew it was the right thing to do. As we waited in the parent waiting room for what was about 45 min to an hour seemed like 8 hours, especially when you hear CODE BLUE! Thank goodness it wasn't Emma and that it was canceled quickly (we pray for whomever that was). The doctor came out and said the surgery went great and she handled it like a champ and that we could see her in about 15 min. We were soon called back to see our little princess, she was still sleeping but she looked great. They soon moved us to our room where we would stay for at least 24 hours. Emma's pain at first was so much for her that she cried and cried. I felt so helpless, my baby was hurting and I couldn't stop the pain. This was really hard because Emma doesn't really cry unless she's really mad/hungry or hurting. Finally after some pain meds she started to get a little more comfortable, but still irritable at times. Big sister came to see her and that was good for all of us we needed some good hugs and comfort. After we finally got pain managed we just wanted her to sleep because she couldn't eat until 10:30 PM so that would have put her 24 hours without eating poor girl was so hungry. She handled all her feeds really well and started to wake up more and be talkative the next morning. I truly believe she needed food because she was a different little girl after that. We were able to head home that evening at around 7 PM.
She is tolerating her feeds pretty well. At first we had throwing up....A LOT of it. But currently she is taking 180 ml/hr. for those of you that are confused by that like I was 3 weeks ago, it means she gets 6 oz. over the course of an hour. I think that she missed her bottle, but now brushing her teeth is her favorite she gets to have liquid in her mouth, obviously not a ton but it makes her smile. Here are some pictures from her hospital stay.
Sister came to visit
Can it get any more precious???
Finally playing with her monkey "Charlee"
Oct. 25
Poor big sister now it's her turn at the hospital :(
We have been home for a week at this point and we were handling things pretty well. We were nervous to be on our own with both girls but we had to start at some point. The week prior Brandon and I both had the week off due to a school break called UEA. Well on this day I get a text message from Brandon asking what time my students go home, I didn't immediately get this message so when I finally did there was another message too that said call me when you can. I started to get nervous cause he NEVER texts me at work. Luckily it was recess so I sent my kiddos outside and called him. He told me that a vase from the top of the fridge had fallen and dropped on Ava's toe. He said he thought it was broken and the nail was barely hanging on.....lots of blood. After telling me this he proceeds to tell me that while he was cleaning Ava up she started screaming and pointing at Emma who was throwing up so he ran to her sat her up. Poor dad was covered in blood and throw up. By the time I got home we had 45 min to get cleaned up and get to the dr. (who is 20 min away but so worth it). He took x-rays yes it was broken but what needed to be done he couldn't do in the office because she needed to be somewhat sedated. So we called gma and gpa Allen and gave them a crash course in the G-Tube and we rushed Ava to Primary Children's Hospital. She got all stitched up and taken care of, needless to say this mom and dad were exhausted at this point. All we could do was laugh because this is what our new normal is.......expect the unexpected.
NOW
Both girls doing great and loving their new Pajama's!
Thanks Huber Family
Both girls are doing AMAZING! We definitely have two very strong and brave girls. This week coming up is full and very messy haha. We have an EEG on Tuesday because we were worried we are seeing some seizure activity, but when I sent our neurologist a video she said she couldn't be certain but we will get an EEG to rule it out, but both of us were wondering if it was more of a GI issue. We will get the results by the next day at our follow up appointment. Prayers that it is not seizure activity and that whatever it is we can get it stopped. Mom has PT conferences on Wednesday and Thursday plus sisters first conference on Wednesday, sister has dance Monday and Wednesday, but most importantly Emma has a follow up with her surgeon on Thursday! PHEW just talking about this week is exhausting. We will make it tho because this is just our new normal and we will embrace it and love every second we are given.
We had a great Halloween trick-or-treating with family and watching Ava in her first Halloween parade at school. Brandon had the day off and so we were both able to help out for her Halloween class party and that was fun for all of us too. We had a family costume this year...we were the Mario Brothers Characters....Brandon was Mario, I was Luigi, Ava was Princess Peach and Emma was Yoshi. Let me tell you about this purple pumpkin.... Ava was begging to be in charge of Emma's pumpkin this year so we of course said sure do whatever you want. This is what she came up with, a purple pumpkin for epilepsy, with a blue ribbon for lissencephaly, and hearts because she loves Emma so much. OMG can you believe this girl is only 5! Her knowledge and love for Emma blows my mind. We are so proud of you Ava and we love you so much! Hope you all had a fun, safe and seizure free Halloween.
Emma has started to play more and more with toys and we couldn't be more excited about it. Thanks again for all your love and support. We plan on putting shirts up for sale again soon and we are excited for new styles and color choices. We almost have our USA map filled we are only missing Vermont, so if you know anyone living in Vermont please share our cutie with them and have them share and comment that they follow! Here are some adorable pictures and video to leave you with a SMILE <3
This smile!!!!
Happy to be home from the hospital
So thrilled to get so many goodies from friends...THANK YOU!!!
one of my favorites :)
Here is our Map of the USA come on VERMONT!!!
Here is the start of our World Map. I am so excited to get started!
November is Epilepsy Awareness Month-if you wear purple this month please think of Emma and all other who
fight the epilepsy battle everyday. We would love to see you post yourself in your purple this month please tag us in your picture or post to Emma's page.
Emma sends you all Kisses! She loves to give Kisses awe so sweet!
