Wednesday, December 10, 2008

The day after....

You already know that last night was horrible because Jude aspirated on his meds and we had to call 911. At least now we know it takes them over 10 mins to get here because we are in a Fort Worth annex. Anyway, he is ok. He slept most the night laying next to me, but would not sleep in his bassinet. When he got up this morning we knew it was time to administer the meds that he choked on last night. Mike's hands were shaking in fear and he was praying under his breath, but he was being so strong. I insisted we put his meds in 1 ounce of pedialyte. He sucked it down within 2 mins so that is now going to be our new routine. Since he got the entire dose for the first time he has been sleeping ever since. Which I worry his food intake is less, but I know the sleep is good too. He did spend an hour awake this morning with me talking to him like I always do. He cooed, laughed, and smiled at me. I realized last night by research that the dr's were basically saying the only thing that is normal in Judes head is his brain stem. He really did mention "all it takes is a brain stem to be a baby". I don't really agree with that because he smiles, rolls over, coos, and plays with you. Something has to be working if only a little bit. We also did some tests this morning with him I would walk to one side of the room and call him. No matter where I was he turned to find me and would look right at me. Last night was scary, but we made it through with lots of tears. The dr's have not given Jude long to live, but we have! They said he has close lipped schizencephaly, PMG ( but 2 doctors have differing opinions on that), a large arachnoid cysts in the back, a small cerebellum, missing his corpus callosum (or it's very very thin), and cortical thinning. In other words his brain is MESSED UP! I still question what I did while he was inside me, but the doctors reassure us it was just a genetic issue. He had that stroke and his brain never recovered and therefore formed wrong. He does so much though and we can only hope he continues too. We will cherish these moments we have with him, and get him the therapy he needs. We mourn for what we have lost, but we are thankful for what we have. Thanks again to everyone. I am in awe of my family and friends with everything they have done. I have offers from people to bring food, clean, and my best friend even set up a fund for Jude. I am just amazed!!!!!!!! My aunt even told me to quit work and live in her basement which isn't feasible but so cute she offered. I don't think I told you last night, but the fire truck ran over my neighbors mailbox and demolished it.....it provided a little horrible entertainment. They are German and had no idea what the hay had happened!!! We also learned our neighbor across the street is a physicians assistant, and he said if anything happens we can come get him until the paramedics arrive. That is so great to hear! I am sure I will keep having these up and downs. I slept until 12:15 after Jude went back to sleep and I am still here in my pajamas. Tomorrow I have to go back to work so I am spending my time with my kids today. I have the most amazing husband walking with me hand in hand through this tragic nightmare. Without him I know I would fall to pieces...thank you Mike. I will update more tonight.

Even in the hospital he is so cute!
Image and video hosting by TinyPic

10 comments:

Jennifer said...

Let us know about that fund...

Anonymous said...

I aslo believe that with his movement like your talking about explains that there is still hope and doctors cant explain. I believe that the brain also can still develop. Dont give up and keep fighting, keep the faith. God can heal him I have seen it to many times before. If is very important that you rest too when you can, it will help with your nerves and help you cope. I prayed really hard for you and your family and will continue to do so. He is a very cute kido!

Susie Clinesmith said...
This comment has been removed by the author.
da momma said...

WOW, heard of yall through Sarah's blog...I will be following you and praying for yall! God's plan is perfect...even when it sure doesnt feel like it. We have been to Cooks with my son, last year and unexplainable seizures (he is fine now)...Just KNOW that you rest in His care and that angels surround you guys! Read Psalms 91...It gives us peace and I pray it will you too!

Mara said...

Stay strong- Doctors are not always right and miracles happen every day ! I would love to be at the baptism but with Kayden sick I just think I could drive the 6 hours round trip. Iw ill have you in my thoughts and prayers !

Reagan Leigh said...

Such a cute picture and such a sweet comment from your husband. I remember reading something on another mother's blog a while back thinking...I wish I would have seen this when Reagan was first diagnosed. Read the whole post at http://www.crazyforcody.com/what-your-dr-wont-tell-you/.
My favorite part is at the end where she says "Most importantly - don't waste months and months being depressed over things that may never happen! In the beginning, we were told Cody would probably never walk. I grieved and grieved this bit of information. I researched and imagined the walkers, wheelchairs, etc... we would need over the years. I cried and cried over Cody not being able to play in our yard (we have over an acre of land with fun boy stuff like snakes, grasshoppers, frogs, etc.) I realized he'd never be able to frolic in our yard like a little boy should. And guess what? He's WALKING. And he's showing signs he may even talk! ALL THAT TIME WASTED! He plays in our yard every single day! Oh the hours of tears I wish I could have back...the pain I felt that was needless." Don't waste time worrying over things that may never happen. Love your child, do everything you can for him, and focus on the positives! Take care.

ladyeyes60 said...

Oh Jen! I pray so much for Jude. He was brought into this world for a reason and God chose you and Mike as his parents because he knows you have strength, comfort, compassion, and most of all so much love in your heart. Meghan and I are always thinking of you and know we are always here for you. God Bless Jude and also Em for I know she is hurting too. We will continue to ask the Lord to help Jude and your family.

Susan & Meghan

Anonymous said...

Jennifer, you have an awful lot of people praying for you - all across the country. I have personal knowledge that the Hollywood UMC has you on their prayer chain. I wish I could just hold you all.

Anonymous said...

I have to say that I have been keeping up with what you're going through since you were pregnant. I have a 16 week old daughter, who is healthy and fine. I wanted to tell you that she still can't roll over! Jude had her beaten in that regard by miles!

He's beautiful and tremendously lucky to have you as parents and to have a sweet big sister as Emily!

My prayers are being said and sent straight to heaven for his healing and for your hearts!

Laura Carter said...

Hi Jen...I'm praying for you and your family. Jude is precious and he's beat a lot of odds already and I pray he continues to do so. You're in my prayers.