Tests & Surgery, approaching week 4

Its such a beautiful Fall day here in Iowa. I try to find that as the silver lining amongst other things going on with our girl. Here is the great news. She is feisty, sassy and fed UP! Now that is the Danielle that we know.

Neurology came in and talked with us on Sunday at great length about the EEG that they performed on Danielle.
Now whether this is right, wrong or indifferent, one thing that we have really prided ourselves in as parents for Danielle is nutrition. She has been at risk for seizures since she was born a preemie. For the past 7 years we have known that they could occur. However we have really researched a lot of things to try and help her be as healthy as possible, without much added sugar in her diet. For that reason we did not do Pediasure, for example, because the sugar content is high. We fought like crazy with the dietitians over this at one point, until they finally saw our vision. So instead we tried an organic formula for a little while and since then have switched to a more toddler like formula for her nutrition. Danielle also takes a few supplements. Beings she can't eat on her own, we have to support her in any way that we can. With extra fruits and veggies, protein and a couple other things, we have tried to make her diet as well rounded as possible. Is there room for improvement, absolutely. But we just really are so careful about anything we put into her mouth, because we know that diet can affect and cause seizures. So when Danielle had this seizure over the weekend, it not only deeply saddened us, but we realized that it was completely out of our control. There is absolutely nothing we could have done to stop it. Maybe I would have noticed an error if I would not have left that afternoon, yes, and that is mommy guilt, but for any other reason, there is nothing we could have done.

The results of the eeg did not show any seizure activity! This was super great news! They did see some increased brain waves when Danielle was sleeping, that caused them to alert the doctor. Because the lights in the room were not bright enough to clearly see Danielle thru the video camera she does not know what Danielle was acting like at that time, however in Danielle's case she did not believe it to be seizure activity. And when Danielle was awake, her brain was wide awake to she said. Working hard, that made us giggle, because she is absolutely a smart cookie! She has a BIG story to tell us with those eyes. With Danielle's brain hemorrhage after she was born, there is a lot that goes on up in that little head of hers that is a little different than you and I. It breaks my heart. If I could make anything better for her, make life easier for her, you better believe that I would give ANYTHING to do so. But she only knows how she knows to process things and to hear that she is not having constant seizure activity was a good feeling. Now does this mean that this will always be the case for her. Nope. Does this mean we are out of the woods. Nope. Does this mean that we will never worry about this happening again. Unfortunately no. But we do know that the most likely cause of her seizure was medication related, ventricular error by staff, or some other cause that they have not been able to figure out.

After she had the seizure things kindof went into a holding pattern. Neurosurgery needed to make sure she was stable. Neurology needed to make sure she did not need to be medicated. And Pediatric Surgery is still keeping a close eye on her tummy, feedings and how her body is processing all of this stuff that is still going on. Not to mention the Pediatric Intensive Care team needed to re-evaluate every single med she was on and discontinue some ASAP.

Danielle has been infection free for just over a week. This is the best news yet. Neurosurgery keeps taking samples from her ventricular drains daily to make sure that they stay on top of her. Her labs are back within the normal range except for a few things that they are tweaking with IV fluids and watching. So this means we are getting close to being ready for that 3rd surgery to put her shunt back in.

Today Danielle will have a very in depth MRI to map out her head. This little girl has had 13 surgeries on her tiny little head in the past 2.5 years. 13! That just breaks my heart. And from a Neurosurgery standpoint, they cannot use an access point where she had a previous infection. So that means they cannot use one of those precious 13 access points where they have went in before. With her head being smaller than a small melon, this makes for VERY careful planning. Today that is the plan. They also need to look and see where the best place is to put her shunt tubing. Before it would run down the side of her neck, over her clavicle and into her tummy. Well now with a recent tummy infection and the tubing attaching itself to her intestine, this may mean they will run the shunt tubing either to her heart or to her lung. Scary stuff. So today is important for them to see what they need to see and also to get a really good look at her brain with a long MRI since she will be sedated for it.

Surgery is now scheduled for tomorrow, pending the results of today. We are really blessed with some absolutely amazing friends and family. And if you are reading this posting you are one of those blessings to us. To be thinking of our girl. To be praying for her. To be checking in to see how she is doing. We are truly blessed by you. Over the next few days we would appreciate so much any positive energy and prayers that you could send her way. It seems so crazy that on Thursday she will have been at the U for a month. The days have seemed so long, yet so short. Time has flown by and it has seemed to stop at times. Days have been filled with happiness, sadness and uncertainty. All of those emotions you know that come with being a parent. Your heart literally lives outside your body and you just want to take all of the pain away from your kids when they are suffering. Danielle teaches us more about life on a daily basis than we ever expected as parents. And she truly lives each day with a smile on her face. She is happy to be here. She is happy to be living. Even with daily struggles, she doesn't care, she wakes up a puts a smile on that pretty face of hers. If there is no smile, then something is wrong.

I am grateful to have you praying for our family. I am even more grateful to have a daughter like our sweet girl. We are blessed by her. I am sure you have someone in your life that you are blessed by also. Please do me a favor today she tell that special someone how special they are to you. Life it too short to not share the love.
Many Blessings to you on this Tuesday.