July 12, 2009 (post 1)

Sunday, July 12, 2009 7:41 AM, EDT

When we first began this journey, I used "if" often. "If" she has a genetic disorder, "if" she has to have surgery, "if" we make it home together. I knew the Lord was the only one who had the answers to those scenarios.

It seems so long ago that Geneva was born and yet it was a mere 6 days ago. Will I ever stop hearing alarms in my head from oxygen levels dropping? Will I ever get to hold my baby without tubes all over her body? Will I get to take her home? Will I know if something is wrong if she does come home?

Again, I don't know but I trust the Lord and His perfect plan and yet my heart aches. I ache when I hear the baby on the floor cry with no one to console him. I just want to grab his bed and move him next to us so he can get some love. I want to stand up and be next to my baby without leaving her side. I ache for those on the medical transports when I hear the helicopters fly overhead day and night and I pray for those patients and their loved ones, the pilots, crew and doctors. I ache to hold my other children and be with them. And I ache so longingly for my precious little girl. How I long to have her cuddled snuggly by my side.

It's difficult to imagine that just two short days ago everything looked so optimistic and it appeared as though our family would be reunited by Tuesday or Wednesday at the latest. Geneva was not only meeting but surpassing all goals set for her. And then everything changed.

I mentioned before that I saw her make some startle type movements her first night on the new floor. I noticed again in the middle of the night and then once more in the morning. Now that I know what she sounds like before beginning, I'm guessing she had several more episodes during Friday night. I thank the Lord that she had one when all the doctors were outside her door yesterday. Things seemed to go downhill from there. The "episodes" continued all day yesterday. After several hours of requesting a consult, the neurologist finally showed up. She was started on anti-seizur

e medication even though we requested she first have an EEG. The neurologist isn't convinced she is having seizures and told us she would have an EEG today and hopefully we would catch one of these episodes and know if it was a seizure. However, right before I went to bed last night, I was informed one wasn't ordered and they don't know if they will be able to reach someone since it's a Sunday!! Needless to say, I'm not happy right now and am going to rest a little more so I can throw a fit if necessary.

We did have some good news yesterday and that is that the CT scan showed no blood on the brain! Thank you Lord. Her electrolytes and other blood tests came back good and her platelets doubled after her transfusion. I was also able to bathe her, put on a little shirt and some new hairbows in her hair after it was washed. I love the smell of a clean baby.

Prayer requests:

Originally, we thought the chest tubes would be out yesterday but the one around her pleural cavity is having a lot of output. That needs to slow down so they can come out and we don't want any extra fluid around the lungs. Our cardiologist informed us that this could be a potential problem, especially with girls with Turner Syndrome.

Oxygen levels - her oxygen level has been doubled since yesterday. She was so close to being weaned. Now she is up to .7and yesterday was on .25 and .3. Her oxygen levels are difficult to maintain above 90%. Once the chest tubes come out then I heard it's easier to get off the oxygen because usually children take deeper breaths when the tubes are out but it's not a good sign that her levels continue to drop.

My cankles - Feet have been up all night but after just pumping then holding her and feeding her, they are almost back where they were hours ago before elevating them. Also, I broke out in hives on my feet last night so I had to take Benadryl which meant dumping two pumpings of breast milk as well. Then I woke up 2 hrs later literally shivering and chattering my teeth and it was just about 75 degrees here. I suspected I had a fever yesterday and might be developing mastitis so that might have been from a fever breaking.

We will find out if these are seizures and if not, what they are as everyone is baffled right now. I mentioned to the doctors that if it wasn't an infection or something that could have started because of days post-op, they needed to look at what changed from the PCICU to this room because that's when I started losing a connection to her and she began to have them. I suggested they start with changing the pain meds which they did and she is much more alert and making eye contact again!! But, she's also still having these "episodes". Oh it is so painful to watch. The most difficult part of all is that she knows right before they are starting and it's either painful, scary or both because she let's out a moaning cry and then moans or cries occasionally through them. And she's helpless and there is nothing I can do to fix it for her so I stand by her side and cry and pray.

My sweet little Geneva, Mommy wants to just take all these tubes away and take you home with me. You are our strong little girl and have been through so very much in your short little life. I'm so sorry I can't help you any more than I have.

Oh Father, I want to love on this precious baby and raise her to love You but all I ask is that she not suffer. I will miss her so if she's not with us but please, please don't let her hurt like this. I really don't know how much more I can handle.