Tuesday, December 1, 2009

So tired, I apologize if I ramble....

I have often wondered how parents that have children with serious illnesses that require constant hospitalization cope. I still wonder that, because despite the "your strong' emails I receive from others, I admit am not strong when it comes to my family being split apart. I have a tendency to stay up late, and try to work out my emotions. Although, I do have to say that I am beginning to adapt to working, then driving to Dallas, and then going home. I guess that's a good sign since it's only been 4 days. So I guess you just learn to adapt?? We haven't even approached the amount of days many of our friends have toughed through like Zoey's mom, and Kendall's mom. This situation has reminded my heart that many families with seriously ill children need our thoughts, and prayers....... always. When we go about our normal lives, someone could always use our prayers.

I have been working through lunch so I can leave my job at 4:30 to go tend to Jude, and Mike. My boss, and ever faithful Jennifer have been amazing with accommodating my schedule. Today I sent a sob email to Jenn, and Tim that I just wasn't going to be able to hold out without taking a day off to relieve Mike. They were both very understanding, and I plan to spend tomorrow night with Jude, and take Thursday off. I am lucky I have a good job, with good pay, and understanding people.

Once I got to Jude tonight he was sleeping, but he quickly woke up when I started talking to Mike. I ran over and ....... said...

Me: Hi my baby, hi my big boy
Me: How are you darling? Are you feeling better?? You want mommy to hold you?
Jude: {Pterodactyl squeal} smiles!!!

Jude then started arching his back like he wanted me to pick him up, and I did. Mike unhooked Jude's heart monitor, and respiratory monitor so I could hold him close. I got the biggest smiles ever, and lots of coo's!! I was so so happy, and so was Jude. He seemed just like little Jude tonight with his inner light shining bright, and I took in his baby smell. Mike is so good about making sure all Jude's connected wires are in their right place. He is such an amazing father, and you would melt if you saw him with Jude.

I knew Mike needed to eat, and I was very hungry. So Mike, and I then when to grab a tray from the cafeteria, but when we got back poor Jude was so upset. He hates it when we leave the room, so we rarely leave him alone with the nurses. While I was visiting, I was able to get 2 1/2 ounces of formula down Jude, but that only equates to 3 ounces for the day. We are going to ask the nurses to further cut back the IV to see if Jude can increase his food back to 24 ounces a day of pediasure he was taking. If he doesn't, we are starting to consider the G button. I appreciate everyone's advice on the matter, and our main concern has been the increased infection exposure.

After the formula, Jude then had another nasty diaper, which isn't a good sign. One of the reasons they want him to eat is to see if his pancreas can handle the food. I then spent time looking at Mike's tired face, and patting Jude, but soon I had to go. I was reluctant to go, but I kept that to myself, and my faithful husband walked me to my car. When I left I made some calls on my way home, and then grabbed Emmy. Oh my Em, ever faithful to her amazing spirit has been the best child during this entire circumstance. I swear I need to take her on a mommy and Emmy vacation when this is done, and hopefully Jude is home safe and sound while we are out.

Once I was at home I chatted away with my cousin/ aka should be sister, and when I hung up I received a text from Mike, "Jude has a fever" DAMMIT! Excuse my language. Turns out the fever was at 100 which doesn't sound like much, but Jude's temp is like mine always around 97.4. I rarely run a fever, and when I do, Lord knows I am SICK. It means he is fighting his infection, but with the level of antibiotic he has received, it leaves me rather perplexed. So I am again down on my knees praying tonight that they find the final result to resolve these issues. I think I am more worried regarding the fever, but I have had a sick feeling about all of this.

Since my life has been rather laced with negative issues lately I thought I would share some positive aspects of Jude's case I saw tonight.

1. He looked directly at me when I picked him up
2. He recognized my voice
3. He lurched forward to be picked up
4. He acted like he hugged me
5. He smiled, and giggled
6. He seemed pre-occupied with the beeping noise the monitors put off when sounding alarms
7. He "watched" tv which is what distracted him to eat
8. He knew when we weren't there.
9. When I said 'Jude where is sissy? Do you miss sissy?" he scanned the room twice like he was looking for her.

In my eyes these are positive things. In my heart many things are different than they used to be prior to having a special needs child. Honestly, it's not just my heart it's many people's hearts. Even though Jude doesn't speak I feel like he has screamed out to many of my friends, family, and even those who do not personally know him to help others. Since Jude has been diagnosed our mission has been to help help him the best we can, and help other children too. Jude has inspired so many to help others, and that's an amazing accomplishment. Honestly, both my kids have been pretty inspiring, and that makes me so very proud.

While at the hospital I chatted with Mike. I told him our entire neighborhood looks filled with Christmas lights. He looked at me and muttered issues regarding Christmas, but I knew what he meant. . Last December Jude was diagnosed, and our world was shattered. No Christmas lights went up last year, and our lives seemed so sad, but I was determined to bring happiness in on Christmas, and I think I succeeded. So here we are again, with Christmas lights for the house strung all over my dining room, but they will not be hung. This is not sad to us, because they are just possessions, but when Mike said he wished the holidays would just go away, I corrected him. We will have an amazing Christmas, and Jude will be with us. I have worked extra hard for extra Christmas money, and it will be amazing. I even got Jude a giant fuzzy Caterpillar so he has to be home, and okay. He will love his big stuffed animal, and we will love Jude being there. He might also just have to have one of those great aquariums that he loves so much hanging from his crib in the hospital. I doubt Jude will be home before the weekend, but I will be thankful if he is.

Mike told the child life coordinator today that we ordered more items for the smile boxes, and we will deliver them soon. Mike said she is very excited, because they have a lot of kids checked in. Ugh, I hate to hear that, but we will try our best to cheer them up a bit, and their siblings too.


mom2nji said...

I have no idea how you do it. You manage to find the good in a hard situation and still think of others (Smile Boxes). I am thinking and praying about Jude.

Candace said...

Jenn, we are still praying....There is no way to prepare for life like this. It's terrible and hard and frustrating and isolating and lonely and...it sucks. I am sorry that Jude is so sick. But know that many are praying and thinking positive thoughts for your family. We have Emily and Jude's picture on the fridge and whenever I open the fridge, I see it and think good thoughts for you.

jocalyn said...

Call me if you want to talk about the G button. I can share the good, bad, and ugly!

I know how it feels to be torn between taking care of your big kid and being there for the little one too. It sucks. But Emily is like my Kamden...and she'll bounce back a stronger young lady than she started.

This will pass. You all will be home to enjoy your holiday together in no time.

Keep your chin up!

Katy said...

Thsi stuff is so tough. I'll say some prayers for you guys and hopefully Jude will be home soon.