we have a fighter

Our surgeon came in last night and told us that Jacob is still on the ledge. He can keep moving forward or fall back really easily. But he feels he is doing good, since he has been stable. Our next 3 hurdles are 1) He needs to pee. That means his body is healing. And once his swelling goes down, than all that excess fluid leaving will help his oxygen stats increase. 2)His chest will be closed. 3) We need to wean him of the respiratory machine. So this is a marathon, not a sprint he says. Time is going to go really slow.

His labs this morning came back better, so I am feeling good about that. Another uneventful night... oh happy day.

part 2

So going up to see Jacob was tough. He was swollen and is supposed to be getting more and more swollen for a good 24 hours after surgery. His body was having trouble clotting, so he was bleeding a lot out of his chest tube. He also has a little pace maker attached to his heart. The chest was left open in case of complications, the doctors and surgeons can get in there quickly to look and see what is wrong.

We had a few major scares. This has been the scariest, most confusing time of my life. Its hard to know what you should be doing and thinking. Over night the surgeon was called and the doctors opened up Jacob's chest to look around to see where the bleeding was coming from. But the surgeon did not have to come back in, he just talked to the doctors over the phone.

Next day, Friday, was even worse. Jacob's oxygen stats were in the low 40s. And he is on the highest setting for his respiratory machine. The machine is working fully for him. At 100% oxygen. He is not breathing at all on his own. They actually have him paralyzed, so his body won't have to work on anything else, but healing his heart. So his stats were dropping and all the doctors were coming from everywhere. Echos and x-rays were done. Again they had to open his chest band aid up. The surgeon was called. They found some blood clots in his body around the lungs, so the surgeon was debating if it would be safe enough for him to actually go into his body at this point, but he decided it would be too risky. I knew things weren't looking good when one of my favorite doctors who has been with us since the beginning was wiping tears from his eyes. They basically told me, there is nothing they can really do for him right now and we just need his heart function to improve. From the echo it was looking worse than ever.

Thankfully last night, he stabilized again. And overnight went well.

I will try to post more frequently because than I can give you more details because everything will be fresh in my mind.

sorry for no updates

Doing this blog is a little more stressful this time around... its hard for me to write when going through so much. So sorry I never told anybody whats going on because I know some people were waiting.

I don't know where to even start, since surgery was now 2 days ago (almost). I will do my best...

Wednesday before surgery was tough. We have an amazing team of nurses and doctors on the ICU who have come to know and love Jacob. So everyone was coming up to me and him, and trying to be encouraging and positive, but you could tell in everyone's eyes that they were scared. Numerous were crying as their shift completed and they came in to say good-bye to us. Even when the surgeon came in, his undertone was negative, when usually he is a very positive person. Lots of family came in also, which helped me remain stronger, because even though I am a emotional person and have cried in front of probably everyone I know, I hate when people see me cry. Especially at times like this when I need to be strong.

My ICU doctor, my favorite one, is working this week and he promised me that I could hold Jacob. So the respiratory team and nurses came in and managed to transfer him from his bed to my arms, so Alex and I both had a chance to hold him. :) That meant everything to me, because we were earlier told that we would not be able to do that. Also my kind doctor allowed Isaac and Nico to come in to see their brother too (also against the rules.) They were telling Jacob to be strong and Jehovah will help him. Isaac was singing him lullabies and mama was trying to once again be strong.

I did manage to sleep 4 hours that night, but when I awoke I found out that baby Olivia (that I talked about on facebook) a 2 week old JW who just had her 1st surgery for HPLH and looked perfect just four hours ago.. passed away. Not a good way to start the morning.. I was crying for them, I was crying for us. This news also meant that our surgeon was here in the mid night for baby Olivia and in just a few short hours has to do a full day complex surgery on Jacob.

So 7am came. I was feeling a million different emotions. Yet all our favorite nurses turned out to be working. Plus we got the respiratory therapist we knew. I felt assured to see so many smiling faces. One nurse even wore her Ohio State gear for "good luck" she said, so that was sweet because I knew all day everyone was going to be praying for Jacob and thinking of him.

Surgery took about 11 hours. We got updates every 2 hours. Everything was going well. But than when they tried to take him of the heart lung bypass machine his only heart fluttered a few times. Our surgeon looked at things again and noticed his heart was tilted. So he had to fix that, and they tried again to take him off bypass. This time the echo still showed extremely poor heart function. So he decided to put him back on the machine and let his heart rest for 45 minutes or so. At this point I pretty much lost it and was begging Jehovah to help baby Jacob even more than ever before. Than we got the call, that Jacob was off bypass!!! I was happier than I have been since I can;t even remember. Thank you Jehovah!! Hugs were coming from all around! We were very happy!

A while later Dr. Galantowicz came out it talk about the surgery with us. He said that while he was in the heart he noticed some more problems. Like he had a heart attack! Probably happened while he was in the womb. Isn't that crazy? I didn't even know that could happen. The Dr. said he hasn't seen this in a long time. So part of his heart was dead from that. Also, as I mentioned earlier his heart was tilted and not in the right place. So he had to fix that. He also found the leak in the tricuspid valve was because part of the valve never fully emerged, but he was able to fix that a little bit to hopefully help it leak less. His heart function was really bad still.

But we made it through surgery, even though our baby still has a lot more to endure and fight. He is in extreme critical condition at this point.

surgery tomorrow

Okay, so the big day is here! I am scared out of my mind, but also strong. I know Jehovah is going to help us through this.

Please pray for Jacob as much as possible!!! This is it... we need this one to go well. This is the one we have been waiting for that will reconstruct his whole heart. After this he will have much better circulation. He won't be so cold, sweaty and purple and he will feel a lot better!

So the next few days are going to be critical, critical.

Baby Emily :(

so sad... Dr. G had an emergency surgery early am in the ICU for baby Emily- 11 months old, JW from Virginia.. and she passed away. I can't stop crying for her family.

They came yesterday for heart surgery during the day and at around 10pm last night the ICU was closed to parents going in and out because their was an emergency surgery for Baby Emily right in her room. Than she seemed okay, but this morning around 5 they noticed she was bleeding internally. And had to do another emergency operation.

All parents again had to leave, as we were waiting in the hallway we meet baby Emily's family. And found out that they too were Jehovah's Witnesses. When Dr. G came out only maybe a hour later, we knew things weren't going to be good. It was one of the hardest things for me and I just met the family. I can only imagine what they are going through right now.

Its like I feel so useless because I want to do something for them, but what can you really do? I know if it was me, I would want to be alone. So after being with them awhile, we left them alone with their immediate family.

Please pray for them to have strength... what a faithful little girl... you know she made Jehovah God happy even in her short life. Thank goodness we have the resurrection hope, even though that doesn't ease the pain of the moment. We just need God's Kingdom rule so badly. Its just not fair for these little babies to be going through so much. God promises us that he "will wipe out every tear from your eyes and death will be no more." and there is going to be a resurrection to this very earth where little babies like Emily will live forever in paradise and nobody will say I am sick ever again! That day just can't come soon enough!!!

August 13th

So new surgery date is August 13th. I wish it could have been sooner for the little guy, but this is what the surgeon said. So we have to trust that it is for Jakey's best interests.

Today they are starting the other tests for his bowels. Basically, they are going to put a metal down his NG tube and and through an x-ray type thing watch it go through his digestive system to rule out any other problems that may still be there. Hopefully all will be clear and than Friday he can start slowly having food in his stomach again. You would think that would make him feel just alittle bit better.

Last night we had some problems with Jacob's oxygen levels being low. The x-ray showed his left lung was partially collapsed. That happened because his heart is so big. But they adjusted some things and today seems to be doing better.

Blood count is now 15!! So I am happy it is going up. He is now getting epo shots everyday to build up before surgery.

back some steps..

Our good day did not last for long.... Jacob is back on the breathing tube. :( Friday was not a good day at all. Everything slowly was getting worse and worse. His little body was using so much energy to try and breathe and it was just too hard for him. The heart was working so hard, and was not able to adequetaly pump blood and oxygen throughout his body. Jakey's hands and feet were getting cold again and he was turning a paler gray color, so they had to put the breathing tube back in. That way his body doesn;t have to work so hard.

So now is sedated and stable and has been this way for the whole weekend. Poor little guy. We are in a state of not really knowing what is going to be happening next. The stomach x-rays are looking better, so that is good. The general surgeons (for his stomach/bowels) said that they are signing off on doing surgery for now, so his heart surgery can take place when Dr. Galantowicz feels he is ready. Than after the heart is complete and Jakey starts eating orally the general surgeons are going to come back into the picture to do tests and make sure his bowels are completely okay.

For now we are just waiting to hear from the cardiologists and the surgeon to see when they think Jacob is ready for surgery. There are advantages to doing it sooner than later.... like obviously heart function, and for him to get off the breathing tube... but at the same time we want to make sure he is fully recovered from his infection and also build up his blood count. His hemoglobin has decreased from 18-12.9 since we have been here, so that is not good.

Just taking one day at a time. It doesn't matter how long we are here, as long as Jacob gets to come home with us when we leave!

We are having wonderful love and support from our family and world wide brotherhood! But of course I miss home like crazy too. Love to you all!