Update on Baby Paxton

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pinkandblue
Our family is complete, maybe

Member since 9/05

32436 total posts

Name:
Stephanie

Update on Baby Paxton

She is still holding on...I am really praying for a miracle for this precoius baby Chat Icon

Here is todays journal update from her mom, Jennifer

Bittersweet.. that would be the word I would use for today.

P is still with us and Oh my is she ever beautiful even in her seizure state. Her eyes are marvelous just like I remembered them!

As I stated last night P started waking around 2 a.m. and by 5:30 last night I knew she had a whole other plan than we did. She was quite awake by then and was gagging on her tube. She was of course seizing. They came around 9:00 to do the EEG and the room was filled with many staff who we have fallen in love with. The EEG showed something the Drs. nor Lacey and I expected. There was not much full blown seizing going on. Not large ones as we expected. This is where the bitter part comes in. The EEG showed that P's little brain has seized so much and so hard that it has started burning itself out. It is so burnt out it now doesn't have enough activity to throw itself into those large long seizures. Good that she is only having many small seizures.. but VERY bad because she has very little brain activity to actually have a real life. :(

Her life is still in the balance and we are now really on borrowed time I believe. The day was full of turmoil and pain. Finding out that if our baby girl lives she will do nothing but lay in a bed and seize killed our souls and had us cursing God for not coming to get her when he had the chance to do it in peace.

But now as the shock is wearing off we are both feeling greatful for the time we are getting to spend with her. She seems to be pretty peaceful even though she is seizing over and over. We are fearful that she is still in pain even though she doesn't appear to be. We are afraid for hers and our familys future. Everyday we will wake wondering if today is the day she will not live. Everyday we will have to sit and watch our baby girl seize over and over and worry about what kind of life she has. The Drs. still believe P will not live.. we just don't know how long she will live for.

She is still having breathing issues every now and again. And having a hard time with excess saliva due to all the seizures Plus she started throwing up and her G- tube button seems to be trying to come out. So we don't know how she will do through the night and coming days. I do pray that God doesn't prolong her life to let her suffer.. but I am going to take this time to love and memorize everything about my baby P. She has no tubes connected to her and only one set of wires to connect her to a monitor. It is so nice to be able to cuddle and snuggle her now.

I am thinking God knew I was not ready to let me baby go. And that I would not be able to live had I to made the choice to help end her life. I think he is going to let P determine when she is ready to join him in Heaven and allow me to come to terms with the idea that I am going to lose my baby. So it is Bittersweet that I am loving on my baby right now.

Let me tell you we are so blessed. I am blown away by the support we have had.. but today was even more mind blowing. The hits and the number of people who signed P's guestbook today is amazing.

Charlotte Mommies closed their whole site down from 9 am-9 pm for a Moment of Silence so that members would reflect and pray for baby P. When I heard about this it brought tears to my eyes and I think God heard all of you and decided to give me a little more time with my Sweet P.

Alica and Sheri.. wow.. that is all I can say. You both showed up here with your cameras ready. I said it yesterday and I will say it again.. There is NO greater gift you both could have given me than pictures of these emotional days and pictures of P without tubes and wires down her throat. I will treasure them forever. I can't thank both of you ladies enough.

To all the staff here at Brenner's.. I hate that we had to meet all of you through these horrible circumstances but we could have not asked for a better place to be through these times. I can't believe how many wonderful people work here. We have made so many friends and have enjoyed everyones company these past 2 months. I am not sure I could have made it and stayed semi sane if it weren't for all of you.

I fear for the days to come because life is going to be anything but easy. I want to keep my daughter because I love her so very much but I do love her so much that I want a better life for her than what she has been given. So I will pray that God gives her peace from her seizures and a life more than lying in the bed and if in order for her to have that she has to go to the Lord than I will pray that his will is done.

Blessings,
Jennifer

Posted 2/27/08 9:33 PM