Sunday, December 25, 2011
Friday, December 23, 2011
Really... 2 already???? These two years have flown by and I will always remember the first time I saw my itty bitty baby strapped to wires, laying in an airtight incubator. Her being so tiny and fragile made my hands feel huge and clumsy around her. Despite all of the reports and predictions, Lexie's birth was intense, yet relieving. All the past worries didn't seem to matter as much because it was over. The damage had been done and we knew we had to just keep moving forward. She was here so the logical thing to do was just to take each day one day at a time. When you start questioning what the future holds, it can get muddy and your thoughts can quickly turn on you. Stress, anxiety and worry start to take over and then you are suddenly drowning in depression. Even after a conversation with the neonatal doctor where he basically told me in a nonchalant way that she was not expected to live long and even if she did it would be a low quality of life, I still answered " Well ,we will have to see won't we." The look on his face was priceless because he could tell I took his information about as sincere as he delivered it. His name still comes up time to time but I have chosen not to drop by for a visit because I know once I get emotional with him, I will not be able to control my actions. I can just see the headlines 'Deranged mother beats doctor with his stethoscope."
Once Lexie received her shunt we knew that we had done all that we could do regarding her hydro. However, like any newborn baby she just needed our love, support, and patience. I am not going to lie, our schedule is full of therapy and doctor visits but it doesn't feel overbearing compared to playgroup activities and t-ball. I thought our life was going to not feel like our life but I think it feels exactly how our life should be. I don't think we have missed out by having a special needs child but in fact have gained more than we ever expected. Yes, there are more hiccups with Lexie but I find that I worry about all of my children equally. Sometimes, I have to remind myself that Lexie is still a toddler and is testing her limits. She will continue to do that despite her hydro and there are some things she just has to learn on her own.
Eric and I feel very blessed because Lexie has achieved more than we thought she ever would. Like many special needs parents we had prepared ourselves for the worst yet hoped for the best. Because of that I think we get so much joy out of each new milestone. We are currently working on her feeding herself and walking. She is so close at walking that I truly think it won't be long before she just takes off.
Now, enough with memory lane, before Lexie's recent ER trip we were expecting to celebrate Lexie's birthday with family. However that trip was canceled so we decided to celebrate here with our little family. We thought Lexie would enjoy the Rainforest Cafe and we were absolutely right. Talk about sensory overload and she loved it! Of course, Ethan and Gracie loved it as well. She especially liked everyone singing Happy Birthday to her. I don't think I have ever seen her smile that wide or giggle that much before. She devoured her Volcano cake and I think that is the longest she has ever sat in one sitting. After that we came home to open presents were she really enjoyed the tissue paper ;). I think after our hectic week, it was a perfect way to celebrate our little girl's birthday.
***Not 10 minutes after I finished this post we had to rush Lexie back to the hospital. At about 8:00pm we noticed that Lexie was having a hard time crawling. We also noticed that her right side was very limp and and not moving. Once we got to the ER her symptoms worsened to the point she couldn't even sit up. They did another CT scan which came back normal. It was determined that Lexie had experienced Todd's Paralysis. Thankfully by the next morning (Christmas Eve), she was back to herself so we were released. She wasn't crawling by that point but I think it had to do with the IV that was in her hand because as soon as we walked into the door, she was all over the place. I have no idea whether Lexie was trying to make this a memorable Christmas or what but we are glad that we are all home together patiently awaiting the arrival of Santa.******
Although, I think Gracie's outfit ate more cake than she did.
Sunday night at around 10 pm, Eric and I were making our nightly rounds. We always go and check in on our sleeping babies before we call it a night. When I walked upon Lexie's room I noticed her light was on. As I was about to question Eric why he would turn her light on, afraid that he was about to wake her up, is when I noticed he was holding her shaking body. She had thrown up in her crib and no matter how much we yelled out her name, her poor little body kept jerking. I ran to my room to get my cell phone and called 911. It took them about 10 minutes (LONGEST 10 minutes of my life) to reach us and they finally got the seizure to stop while en route to the hospital. I told them that Lexie did have a cough and a small fever during the day but we kept it at bay with Motrin. While we were in the ER, Lexie had another seizure lasting 18 minutes. I don’t think I will ever accept the helpless feeling that precedes many of Lexie’s predicaments. It is gut-wrenching to stand by and surrender control. I basically just had to watch while the nurses and doctors did their job. However, out of the whole experience, I am very happy with how devoted they were to her situation. They did a CT scan, shunt series x-ray, and a spinal tap. Everything came back normal and her shunt was working wonderfully. Once those tests came back normal, she was sent up to Intensive Care Unit for observation. It was in ICU that an EEG was done to determine why she was having seizures. After two days of observation and no seizure activity, we were released. We were given Keppra to control any activity and the neurologist thinks they make be febrile but he wants us to discuss it with our neurologist before we decide on anything. Since it was an emergency we were taken to Methodist Children’s Hospital but our Neuro is at Brooke Army Medical center. We have made an appointment and I am looking forward to hearing his thoughts.
Lexie hooked up to the EEG (taken with my phone)