Wednesday, February 11, 2009

A little down

I am full of mixed emotions today, and I am trying to sort them all out. I struggle with "thinking" the right thing, and staying in the right frame of mine. Occasionally I am not so positive so you will have to bear with me today.

On one hand I feel like I am more comfortable with everything going on in our lives, and on the other I still feel a bit lost. I teeter between knowing Jude has severe issues, and will never be normal to still having hope that he might overcome the odds. Reality says, Jude won't. I don't mean that negative so let me explain. On the medical side we can look at the MRI findings, and realistically know that Jude's abnormalities are many, and severe. Therefore, from past cases we know that if Jude should overcome the odds and walk, talk, eat, etc he will be in the doctor's eyes "A miracle". That is indeed how they classified if Jude should be functional "a miracle". He didn't mean that rude because he was trying to reassure me that miracles do happen. I do hold out hope that Jude will function by speaking some words, hopefully walking, and not needing a G tube to eat. I think he will be able to see more than the doctors think, and I do see in him hope for being one of those that can do a lot more in than they ever thought he would. Then I look at the situation, and I get upset again that what I listed is now my hope. There is no longer a hope that he will play little league, run, jump, hide, play in the mud, etc. You can think I am terrible, but I am not I am just realistic. We do not think that Jude will live from a wheelchair fed by tubes, and trachs.......but that too is a possibility. There are many mothers I hear from on a daily basis who read my blog that do have children that are pretty much non functional. They all assure me how much they love their children, and how their children light up their lives. I understand that because even with Jude's seizures and issues he lights up my life too. I look forward to going home everyday just to hold the little peanut, and to have Emily snuggle up next to me too. It's just the fact that people in general can be put in a situation like this with their children. It doesn't seem fair, but life rarely is. Mike, and I talked at length last night about Jude's condition because I had received many emails on a support network I am a part of. I have mentioned before that I have a huge issue with feeding Jude through a tube. I am hoping it never comes to that, but again there is a possibility. Children in Jude's situation can frequently silently aspirate on their liquids, and create pneumonia, etc. Again, I am holding out hope that Jude will be able to eat just fine. So my mind bounces back and forth between medical issues, regular life, and what lies ahead. I take every day minute by minute, but a normal human cannot help thinking ahead. I read updates through the support group of many mothers findings, and I realize we are just getting started on our journey with Jude. We have many doctors visits, tests, and more ahead of us. Sometimes we think we may have a break, but we realize there isn't one. Mike and I were recalling how last April we were so thrilled when the perinatilist said, "you are having a boy", and then in one minute devastated when he said " his brain ventricles are slightly enlarged which could indicate a problem". His brain ventricles are slightly enlarged......... it all started with those words. Now we know for a fact that they were enlarged from fluid that was taking the place of brain tissue do to his stroke. It's amazing how medical circumstances like baby's having strokes never enter your mind unless you are dealing with the situation.

Jude has brought a lot of light into our lives, and has taught us lessons we probably never would have learned. He is a joy to have, and we will always give him the best possible care. I guess I just wanted to ramble and share to those that think we are so strong that sometimes we aren't. This is all still very new to us, and we are still learning to deal as we walk along our path. Sometimes I come to work wondering how everyone can move on with their lives when Jude has such issues. Such a ridiculous though, but one that still passes through my mind. We are thankful each day we have Jude, and appreciate Emily more than I ever would have. Yet the barrage of emotions we have felt over the past year can sometimes take it's toll. I am a bit tired, and my biggest prayer is Jude's seizures would be placed under control. He is still having about four a day, and two of those are at night while we are sleeping. So our specific prayer is the medication will work, and his seizures will stop.

By the way, I just noticed I did not list the right link in the blog I placed about the little boy on Caring bridge the other day. I fixed the link, it's a few blogs down. I am sure his family could still use your prayers for their loss.

Here are some pictures from last night.

Jude asleep:
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Jude and Em pretending to sleep:
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Heather said...

First,thank you for coming by Zoey's site.If you have been before and somehow I missed you,I apologize.Life,here,as you might see,is nothing short of hectic.When I read your post I was drawn to write something similar to something I left on another mom's blog the other day.So I repeat it,not because I am lazy but because it truly is what I feel and it is this .... hope and faith.Those two things are the only things that will see you through days like this.And,having days where you doubt and wonder and worry and are scared are necessary as well.Jude will do amazing things.I promise you that.They may not be by the definition of amazing that you held before but they will be amazing and you will appreciate them in a way that you never did before.Zoey's inutero stoke was huge.That MRI is something my husband and I don't ever want to see again.However,that they suffered them when they did and the facttheir little brains are so pliable and new, will make all the difference.I do not mean to diminish your feelings because believe me,I have been there.With every single diagnosis and up until this latest,our faith and strength has been tested but our faith that God and Zoey will lead the way has been the ultimate things to see us to another day.I wish you all the best for your sweet Jude.Feel free to email me if you have any questions I might be able to answers and lastly,Be good to yourself.You are doing the best you can and from my perspective you are doing an awesome job.

Ellen said...

Such sweetness.
Jenn, I know EVERYTHING you are feeling because you are feeling exactly how I felt when Max was Jude's age.

You must not think too hard about the MRIs. They can show the damage, but they do NOT tell you or the doctors how Jude will progress. I'm telling you, Max's MRI was horrible. And while he is not a "perfect" child today, he is doing really well for himself and doing all sorts of things we never thought he'd be able to. Babies brains are malleable, like Heather says. "Plastic" is the words doctors use. They have the ability to regenerate.

I know how scary and unnerving this all is, how you just want to KNOW what the future holds. So I agree with Heather, try to have hope and faith, but what also helps is trying to hard to just focus on Jude--the progress he makes, his cuteness, what you can do to encourage him and teach him and all that good stuff.