more troubles

If it's not one thing, its another. Unfortunately Jakey's x-rays got worse and it is confirmed that he has necrotizing enterocolitis. (this time it is the correct spelling.) Basically this is a disease of the bowel intestine of newborn children. Usually found in a premature baby or one with complex heart conditions. The cause is unknown again. But this could be explaining his voimiting and blood in his stools from awhile back. I guess no one really knows for sure. So the doctors are thinking this is what caused his fever to spike and the fever is what caused his heart function to almost fail us.

So what does this all mean for our baby? First he needs to stay on antibiotics for 7-10 days. Getting x-rays every 12 hours to look if things are improving or worsening. While the bowel is healing, he can not be given anything by mouth. (which at this point doesn't matter since he is sedated still.) Also he needs a NG tube to pass from his nose to stomach to drain any fluids or air from the stomach to let the bowels rest. Best case scenario is that this heals on its own and next week sometime we can be back on course with heart surgery. But some babies need surgery to fix this condition. So we just need to pray this is not the case. Because Jacob's heart is not going to be okay for much longer. We need him to have surgery like yesterday! But they can not do anything with the heart until the bowel is fixed 100%.

Nothing seems to be going in Jakey's favor... : (

But, another Jehovah's Witness family is here right now from California. Their baby has a similar heart condition... a little less complicated. But they are here for the Glenn- stage 2 big heart operation also. Their baby had surgery last Wednesday and are flying home tomorrow!!! Isn't that amazing! He is doing great. :) We had a chance to get to know them a little and its been really nice. (Also 3 other JWs are in the hospital now~ 2 babies from out of state heart problems and one 17 year old boy with other issues.) So we are getting to know a lot of our friends from different states.

Hoping for a better tomorrow..

This is the most hardest thing I have ever done. Through the years, there were quite a few major heart breaks in my life... but this one tops them all times a million. I just still can't believe that my sweet baby boy is going through so much. Even just Sunday, he looked good. And Wednesday he was perfect. We went to go get some pictures taken before we were admitted to the hospital and he was laughing and cooing and was just perfect. And now.... :( Well, no matter what he is still perfect to me of course. My Jakey made my dreams come true. He is the missing piece in my life... having him makes my family feel complete. I just wish there was something I could do for him, I feel so useless and I am his mama, I am supposed to be protecting him and taking away his pain. But I can't. And it's a terrible feeling...

Since yesterday, the doctors are just monitoring him and keeping him stable. The breathing machine is letting his heart rest, so all his numbers look good. But he is sedated completely still. No news on blood work and no news from the surgeon. It's been a quite night.

We do have a possible new problem though. From Jakey's x-rays the docs noticed something looked wrong with his stomach. They thought it was NEC- Necortiains Enterocolitis. If this is the case, he may need another surgery to his bowels. So the general surgeon came in to talk to us. They didn't seem as concerned about his x-rays, but we are keeping a close eye on it. Every 6 hours x-rays of Jakey's stomach are taken to watch for signs of change. I am trying not to get too worked up about this though, since it is not for sure. But possibly, this could be the reason for his high fever.

They boys were able to see their brother and it went better than I thought. Isaac and Nico have grown up alot also because of all of this. I tryed to prepare them for what they were about to see and they suited up in their masks and gowns and gloves and went over to talk to Jakey. They even had their eyes open this time walking through the ICU. In the beginning they were very scared to see him at the hospital, but now they were brave. They grew up. They understand that Jakey is sick, but he needs us to be with him. They told him to be strong and not to worry and that they love him....I know Jakey was happy to have his brothers talking to him. I give Isaac and Nico a lot of credit for being such amazing big brothers. We have had a long year and they are the best! They love him so much. And are good about me having to be at the hospital all the time and about them being away from home. As a family, when someone is sick or down, its our job to come together and help that person. Do anything we can for them. That is what being a family is all about.

I will try and update more frequently here as I find answers. Thanks for your continued love and prayers.

Never got around to publishing that last post till now because things just got dramatically worse. Jakey's fever is 105, and they had to sedate him and he has a breathing tube. Things went from bad to worse within like a hour. The doctors thought we were going to lose him. I'll write later.. just pray please.

We still don't know what caused his fever, so he may not be able to have surgery on Thursday.

not good weekend

AHHHHH!!!

So why since we have been in the hospital things for Jacob have gotton so much worse? Isn't it supposed to be the opposite?? As I sit here, looking at him, he looks like he should have already had his surgery. He has 7 meds and food going through his THREE IVS. Plus he gets orally 1 more for heart function, 2 for his kidneys, 2 for the major acid reflux he is having, and 3 antibiotics, Tylenol and gas meds to help him poop. And he has oxygen.

We were never able to leave the ICU because of the new meds they put him on in day 2.

The doctors have been coming in constantly all night, because he also spiked a fever of 102.8 So they did some blood work to look for infection.. the results won't be back for 2 days. In the meantime, they started him on antibiotics.... more meds. And are taking all sorts of addition tests to make sure the heart function isn't going to be affected and getting worse. Our doc keep saying that one minute Jakey looks "okay" or "stable" than just a little bit later he looks really bad.

So its been a hard, scary weekend. And as all the doctors seem to like to point out to me, this is just the beginning and after surgery he is going to look alot worse. So of course I am scared out of my mind. But he is still a fighter. He is so out of it most of the time now, but when the IV team comes or they need to take blood, he still gives it to the nurses. For that I am so very proud of him.. He is not going to just sit back and take things. He is a fighter for life!

ICU

We're back....

Jacob is doing okay. Yesterday they put in a IV and started him on some stronger meds to improve his heart function. He was so happy and laughing with the nurses, but when he gets upset, ohhhh he is a fighter! I love that about him! He has such patience, but after a while he lets those nurses know that he has had enough and they better stop touching him. :)

Thankfully, he has been feeding well, so no additional feeding tubes have been placed.

In the middle of the night his level of oxygen in his body went down to the 60s... when we came he was in the high 70s. (a "healthy" person would be at 100). So the nurse got a little worried and gave him some extra oxygen to breathe. It is still in his crib, but I think he is fine. A few times in the past he hit the 60s and his doctor wasn't too concerned about it.

One weird thing is that he has been puking a lot lately? I wouldn't think that has to do with the heart, but maybe? He hardly ever pukes and yesterday he massively throw up 3 times. Hopefully he is not getting sick either, because that would be really bad for him as well.

We are supposed to be getting out of the ICU today (hopefully his low stats won't keep us here.) It is much better up on C5 Floor, where we normally are. They have a nice couch and recliner for mom and I to try and get some rest on and they give us blankets and pillows. (here they have a small, really hard couch and a wooden rocking chair and they give parents nothing for comfort.) Plus they have a bathroom and shower in the room. (here we have to go out of the whole ICU and walk a ways to the bathroom and there is no shower). At C5 it is a brighter and happier place to be. (here all the babies are super sick, right out of surgery and its more sad- you hear moms crying and little kids all the time.) Oh and in C5 we are in control of the temperature in our room. (here it is freezing!)

So that is my little update for now.

Here we go..

At 3 am my mom, Jacob and I headed off to Ohio for our routine doctor's appointment. I've noticed a slight difference in his behavior, but was still thinking everything would be fine. The echo looked about the same, yet Jakey did not gain any weight and the doctor was very worried about him again. He said that he strongly felt that in the best interest of Jakey he should be admitted to the hospital. And have IV meds and tube feedings again to make him as strong as possible for surgery. We managed to let them give us a day to be able to take some pictures of Jakey and spend a night with him, but tomorrow a.m. Jakey needs to be in the hospital. :( They are going to admit him into the ICU because some babies have reactions to the meds they are going to be giving him.

I am very overwhelmed at this moment, just not feeling ready yet. Its hard to know that tomorrow at this time Jakey is going to have at least an IV. And possibly a central line and feeding tube. I wish with all my heart I could take this all away from him. He is such a beautiful baby boy... laughing and cooing all the time.

Please, Please pray for Jacob to be strong and to be okay. He is such a little guy and he has a long, hard road ahead of him. Also, as always I am worried for my Isaac and Nico. This is so much for them to handle also. They love Jacob so much and they are so scared.

Its coming...july 30th 2009

Yesterday we met with our surgeon who is thankfully back from his trip. He was more optimistic about Baby Jakey's condition. Basically, he agreed that things have gotten worse. He brought up heart transplant, but said to him that is something he keeps in his back pocket as the absolute last resort. He feels he can do the surgery, but it will be riskier than we originally were told and planned. Giving it about 85% success rate. Hopefully once the surgery is done, Jakey's heart function will improve. Because the load on the right side of the heart will be lessened.

A major concern is a leak in his triscipic (that is the wrong spelling?) valve. It has always been there, but is getting worse. To fix this, it will be a whole other part to the surgery. Maybe better heart function will improve it, but maybe not. So the surgeon is going to make the call when he is in there and can see exactly what the heart looks like.

So for the leakage it is better it have the surgery now, but for the normal stage 2 for HPLH it is better for Jacob to be closer to 6 months. So we are going to try to wait a few weeks yet and than his surgery will be.

We were told, the doctors are comfortable with us going home for a little bit, so we will be back this weekend. And depending on how things go at the doctor Tuesday, we will see what we will do.

Hopefully this made sense. Sometimes its hard to explain everything that we were told.

It is very scary thinking that Jacob is going to have to have surgery again. He is developing into such a happy, chubby 3 month old... its hard to even get my mind prepared for what will be my reality in 2-3 weeks. But I know Jehovah will help us through, as he has been so much already.

Oh, kinda funny thing is that all along we have been trying to get Jacob to eat because we need him to gain weight right? Well the surgeon told us today that for better blood conservation, he doesn't want him over 6 kilo. (he is 5.7 now) So we are like, wait? So we no longer want him to gain weight? We have been forcing him to eat all along, and now we need him to just maintain for the next weeks. Okay, maybe it is not all that funny. But I thought it was because in my mind getting him to eat was my main concern. :)

Overall though, it has been a nice time in Ohio. My cousin Emily and the kids came for a few days and we did some fun things. We also had a chance to go to the Greek convention for a day, and be with our family. (it was in Ohio.) And the hotel we are at is pretty nice, downtown. Super nice people here. I tell the boys we are like the Disney show, "Suite Life of Zach and Cody." So they love that.

That's it for now. Please keep us in your prayers.....