Thursday, May 24, 2012

We are off the oxygen!!!!

Thank you for praying. We are off the oxygen, so one prayer request answered, but fever still spiked up so keep praying!!

Hospital visit update

Well, what can I say? I'm tired in every sense of the word. Emotionally, physically etc. I'll try to include all of the details here. I can't write Facebook statuses for all of this! Hahaha
Tuesday night HK started having a different kind of seizure for her. Her body started shaking mildly and when I gave the emergency diastat medicine, it didn't pull her out of it so we hopped in the car and drove (actually sped) to the ER which for us is about 45 min away driving fast. The seizure continued until we were about 10 minutes away and then stopped, but we drove on and got a room right away in the ER. They ran some tests and everything seemed normal. At about 2:00 am the doctors decided they were going to admit us to be watched overnight, so I sent Jarod home for sleep because he had to work the next day. HK and I spent the night on the ICU floor. She slept all night due to the seizure and about 4:00 am I went to sleep. Woke up about 8:00 the next morning and HK seemed to be fine, sleepy, but fine. The doctors came around and when the neurologist came by, HK had woken up grumpy and she was crying...she just needed mommy, but the neurologist knew that wasn't her 'norm' so he suggested that we be sent to floor 1 (where the epilepsy patients are) and be observed until the next morning. Uhhhh, so annoying but Jarod went ahead and packed the car for the beach and we figured we would drive in the morning and still have the weekend down there.
When Jarod arrived up at the hospital he felt like Hk had a fever. I had thought the same thing, but her temp was normal so I figured it was me. Got the nurse to check again, but again it showed normal. At this point she was breathing fast and we knew she had a fever but we couldn't get the nurse to do anything, so an hour or so passed and she was happy/talking etc.
She started having her normal eye twitch seizures, but they kept going and coming on again, so on top of the emergency diastat she had the night before and increased doses of her normal meds, they gave her adivan through her IV to treat the seizures. At that point, the nurse tried to deep suction her and get some mucus out but HK gagged, and threw up, but because of all the seizure medicine she was so out of it, that she couldn't get it up. So she started choking, couldn't get a breath, called in rapid response and we all of a sudden became that room where all the nurses come to! Oh my goodness, my child has to have ALL the attention all the time. Hahahaha.
So, where are we now?! When all of that drama happened we think that HK probably aspirated some of her throw up (I apologize to those of you with weak tummies). So, we now sit in the PICU with HK on oxygen, having fevers (due to the aspiration) and still having some eye twitch seizures. Don't have any idea when we will go home. The neurologist said this morning that he would like her seizures to be down before we go home, have to be transferred to a regular room first and obviously off oxygen. Luckily, we are well on our way to being off that!! Maybe even in the next few hours.
Yes, we are disappointed that we couldn't go to the beach. It was just the three of us and we were so looking forward to some rest and relaxation away from hospitals, doctors offices, work and therapy! We just wanted to play!! Oh well, the Lord had other plans for our Memorial Day weekend. This isn't the first time plans have been altered due to our drama queen of a child. :).
Thank you all for your love, prayers, offers of help and support. Please pray that HK can get off her oxygen soon, that her seizures would get under control, that her fevers would stop and there would be no infection! Please pray for Jarod and I to get some much needed rest and for a joyful heart in the midst of disappointment. This is a hard journey we walk, and EVERYONE has something in their life that causes hard times or disappointment. Today, I pray for a renewed spirit for all of you that are facing something difficult.
Thank you from the bottom of my heart,

Wednesday, May 16, 2012

Month 12!!!! How did that happen?!?!

Oh my sweet little angel,
   Mommy and Daddy cannot believe you are one year old! It seems like just yesterday that I was sitting in the NICU with you talking to you, watching your every move and praying we could take you home soon! Oh my word, look how far you have come!! When we left the hospital no doctor or nurse knew how you would do once you got home and all you have done is work hard and surprise every one of them! Mommy didn't know if she would ever get to enjoy your smile or hear your sweet voice and now we tell you every day how beautiful you are and you get the BIGGEST smile on your face!! You talk so much now that I'm not sure I want you to learn words. I think it might be frightening to hear the things you say! Haha.
   You have ministered to so many simply through the way you work so hard and are so joyful while doing it. I pray that one day you will understand the significance of your life and just how many people you have touched. While you haven't met specific milestones on time, you have made beautiful progress and I know it will continue. This month I don't care as much about your weight, height or new things you are learning, but I choose to focus on what a picture of God's faithfulness you are to me. While there are so many days I don't understand God's plan for your life, I rest in the knowledge that He has one! While I do not know what your future holds, I know God has already ordained the days you will be on this Earth. While I do not know what developmental level you will achieve, I know you will be the happiest child and will not know the difference.
   You have taught mommy to trust God even in the darkness, to love others unconditionally, to believe God has a plan for my life too, to live every day as if it were my last, and to live in the moment. The most important thing you have taught me is that God is in control of life, death, circumstances and all of it WILL bring Him glory!
   We love you more than you could ever possibly know! Your twelve months have brought me the greatest joy in my life.
 Mommy and Daddy

In the NICU

Month 1

Month 2

Month 3

Month 4

Month 5

Month 6

Month 7

Month 8

Month 9

Month 10

Month 11

Month 12