2009 is coming to a close

2009 has been one long roller coaster of emotions of a year. It will forever be the best year of my life since I got to have my dreams come true of 3 beautiful children. But at the very same time, the absolute worst year of my life by far. My dreams were crashed into pieces way too quickly. And I miss baby Jakey so much every single day. Nothing is even truly enjoyable anymore, because how can I be having fun without Jacob with us? My heart will forever be broken until our family is all together again.

Jakey would be almost 9 months old now. I am in Florida as I type (everyone else is sleeping), but everytime I see a baby in a stroller I want to cry... I should be here with a stroller and a baby who is trying to climb out of his chair! Who doesn't want to sit for the shows... who is cute with his chubby little legs. It is simply not fair what poor little Jacob had to go through. He endured so much pain. When I even think back to his time in the hospitals, my stomach aches. Poor little guy never got to experience things that we all take for granted everyday. Even just cuddling with your baby. He was looking up at me with those scared little eyes and there was nothing I could do for him. I couldn't take away his pain, I couldn't even hold him.

I know so many others have been through similar things and are going through them and others have it much worse and I just feel for each and every one of them. Be strong all you sweet innocent babies and you loving mamas and dadas.. be strong.

Our family is going to be going to Jacob's "home" Nationwide Childrens hospital on the anniversary of his death in August and when we do we want to spread some cheer to deserving boys and girls and their families. I have a lot of ideas floating around in my head, but I will let you all know when I am for sure on an idea.

My others children are up, so I got to wipe my tears and be done for now. I think this was therapeutic for me today though.

love my 3 boys forever

Yesterday morning at 4:50 am Jacob Miguel Robles passed away. He was the strongest and bravest little boy I have ever known. He was a fighter, but his heart was just too weak and he could not hang on any longer. But he fought hard until the very end. And I am so thankful to Jehovah for allowing him into my life and to be able to have him, even though it was just for a little while. I am also thankful for our suergeon in Coloumbus Ohio, because without him I would not have had Jacob at all.

The doctors were amazed at this strength and how he lasted as long as he did and was able to be home with us, even though it was only for a short time. They said, they have never seen a family who loved their little baby so much and they felt that is why he was able to fight as long as he did. So thank you to all of you who showed so much love towards him. Jacob had a worldwide brotherhood all praying for him and helping him through.

Thank you also to Nationwide Children's hospital for doing all they could and for so much love they showed for jakey and our family.



Jacob's funeral is going to be this Saturday, August 29th at 2:00 pm. At the kingdom hall of Jehovah's Witnesses located at 12165 W. Layton Ave. Greenfield, WI 53228.

Mother's intuition is never wrong.

So, my long day turned into a long night and a longer following day and so on...

I knew things weren't going good. I could feel it. And sad to say, its hard to put into words where we are at today, because writing it down will make it real.

Yesterday night, Jacob's stats were dropping into the teens. The doctors found out that his left lung collapsed. So they inserted 2 additional chest tubes in hopes that draining the air and fluids around the lungs would help some. But nothing seemed to be working... his stats went up to 30s, but that is still way too low.

Long story short.... basically there is nothing else that the doctors can do for Jacob medically. They are giving him comfort care, so that he will not have pain. But his heart is just too sick. Poor guy, not only had half a heart, but the right side suffered a heart attack and is not squeezing properly. He is very, very sick. The doctors have done all they can. But his body is not recovering from surgery. His heart function is still bad, he is swollen even more than yesterday, he still has lots of bloody discharge from his 3 chest tubes.

So at this point, they said bring any family in who wants to say good-bye to him. He is a fighter and still hanging on today. But things look very, very bad.

My heart and head hurts too much to write details at this point.

LONG day

Yes, today was a very long day. Dr. Honest was not looking me in the eyes again. That is never a good sign.

Nothing major has been going wrong. All the doctors are saying, he's doing okay, ...blah ...blah..blah...BUT a lot of little things have been NOT good. And when Dr. Honest can't look at me, I know the truth.

First off, Jacob has a fever again. The boy's pattern is whenever he gets mad, his fever goes up. He is a fighter, and gets mad easily when people are messing with him. But when fever hits 101, they start him on antibiotics and take labs and urine to check for an infection. So it will take 3 days to find out the results.

Also, since he is still super swollen in his head, chest and arms, the surgeon came in today and said we will not close his chest till Monday. Monday??? That is like 5 days away! That can't be a good sign. Yes, let's just let him sit here with an open chest! What about infection? I was originally told 3-5 days open, not 11!!!

Number three, when his lungs are suctioned they are pulling out blood... fresh red blood!!! And later in the day blood was in his mouth. Oh, don't worry about it says the nurse. This happens sometimes. As long as its not dripping from the mouth she says! Again are they joking??? And his blood count is now 9! It was 11 Monday.

Than his fingers on his left hand- 2 of them turned purple, dark purple. So they had to take out his arterial line. They better not have to put that back in because that was not a fun procedure for him either.

Hmm... I'm trying to think what else went wrong today.... His stats are still low. In the 60s. Oxygen the brian and kidneys are using is still low- in the 30s.

So I was crying today... lost it a little in the consultation room. But I think I have good reason. Even though no body else does! The surgeon surely thinks things are fine. "Why do you look sad today?" Hmm.. lets see.....

"Things are good." he tells me.

Anyways.... Thanks for letting me vent a little. Hopefully tomorrow my roller coster of emotions will be traveling back up. I'm sure it will be, thats just how things are going here.

So here is a picture of Jacob today.

Doctor honest keeps coming in and out of Jacob's room. So I am getting a little bit nervous here. Jacob is still holding a lot of fluids, but this blood vessels are getting dehydrated. So he is kinda in a bad spot right now in this area. Also his oxygen stats are still down. So the docs are playing with his meds and the respiratory machine trying to see if they can do anything to help.

Hope our baby boy can start making some positive advancements soon. He has just been pretty much stuck here in the same spot for a few days, and that is not good. We need to get to the next step of closing his chest.

"a little bit good"

According to my honest doctor, Jacob is doing "a little bit good, but he isn't out of the woods yet."

During rounds this morning the doctors were talking a little too long at our door way, so I was getting a little nervous. But it turned out to be okay, thanks to our nurse, Julie, who isn't afraid to disagree with the doctors for us. :)

They were worried about Jacob's oxygen stats.... they have been all over the board lately. He is going from 50s-80s. But again, as he loses fluids, that should help. The doctors did take him off a med today for his blood pressure. And they reduced how much respiratory help he is getting. Now he is at 55% oxygen instead of 100. So we have been making steps in the right direction.

Dr. G came in today and he said it should be about 3-5 days before Jacob will have his chest closed. And another 5-7 days until he is off the respiratory machine. So he estimated about 2 weeks in the ICU. But who really knows? We can't plan too much into the future, for each day has its own anxieties. And we need to get through today, before we can worry about tomorrow. This is something I need to work on.

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!

Happy to say that...

Today was a GOOD day!!!! Jacob's breathing tube came out!! So he is now breathing on his own and looking better. His numbers are all still stable! And the best part is that his x-rays are looking a little better too, so the doctors think that the antibiotics are working to fight off his NEC infection in his bowels! So let's hope and pray so... because we still don't know if he will need surgery for that or not.

So am a very happy person with our positive news. We still have a long, long way to go, but I am so happy. I even got to hold him today. Holding him give me such a sense of calmness... I was just staring at him as he slept in my arms and after awhile I even fell asleep with him. I just felt so relaxed inside, which is something I haven't felt in a long time. It was just wonderful.

So all the prayers are doing us good. Thank you.... :)

a few pictures

This above is Jacob before his big episode where the doctors had to sedate him. He was perfect looking... just beautiful. Below is all of us with gear on to see him after his infection showed up...


My poor sweet little boy! :(

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.....

and so it all begins again...

Lots of things have been going on again. Monday my Milwaukee doctor said he doesn't really feel comfortable working with Jacob, because his condition is so critical he wanted us to go back to Ohio. So we are going to be here until stage 2, whatever that will be.

Once arriving to Ohio, Jacob's cardiologist agreed with Milwaukee Doc. Things apparently worsened a lot over the past 2 weeks where Jacob's heart function is not looking good. It is so bad that he doesn't even know if he is a candidate for the surgery we were planning. He thinks he may be too weak to make it. And even if he makes it past the surgery, he is not sure if his poor heart function will even get much better. So his recommendation was for a heart transplant for Jakey.

Our surgeon is actually in Australia until the 6th of July. :( So no major decisions will be made until than, unless there is an emergency. All the doctors and surgeons that are here met yesterday, and they are all very concerned. They went over a few possible options, like splitting the second surgery into 3 different stages, but they all think heart transplant may be his only opition. But they are all sounding like no matter what our choice is, things aren't looking the best.

So we just really need to pray and have faith that Jehovah will help Jakey's surgeon to have wisdom and be able to get him through these hard times.

We were told to stay close to Ohio until stage 2 in case there is an emergency, but don't need to actually be in the hospital since they aren't doing much for him here.

So here we will be.....

Milwaukee doctor is scaring me...

So we had our appointment yesterday and my doctor in Milwaukee is very, very concerned about Jacob. He couldn't have stressed more how critical his condition is and that he is very high risk. He was shocked that Ohio let us leave..... He says clinically he looked good.. gained weight, blood pressure, stats etc., but that his heart function is very poor and he doesn't even know if Jacob will qualify for the second operation because it may just be too dangerous for him and we should start to think about heart transplants.

So naturally he scared me a lot! But on the other hand, 2 weeks ago he wanted to take Jacob on the flight for life to Ohio, but at Ohio, they said Jacob looked good. So who knows?? Either way it is scary because stage 2 is coming. And we don't know what is going to happen. It is a big surgery and he is just a baby. My poor little guy.. :(

Oh, so Milwaukee doc goes, "if Ohio dosen;t do something soon, I am going to make the decision because I am Jacob's doctor." And I'm thinking what does that mean? So I say, "But I am the mother, so I ultimately make the decision right?" He said yes. But seriously, the way he made it sound is that he believes our child is in danger, and that he will intervene and get him medically care in Milwaukee by whatever means necessary.

So Alex and I have been talking and we think it may be best just to camp out in Ohio again for awhile. At least go there weekly for our echos and see what the doctor there says. Thankfully school is over, so I can take my boys with me this time. We will probably be going on Thursday or Friday next week, hopefully, for an appointment and see what they say. And than we will see what happens.

Please pray for our baby. This summer is going to be so hard on him. :(

part 2

Okay, so on with our adventure....

What the doctors saw with the catherzation looked good. The pressure of blood flow was good. The stent looked fine. So nothing else was needed. One of his bands were a little loose though and the stent was closing just a little bit. Afterwards in the ICU he developed an allergic reaction to something. His head and upper body was really red and swollen. And he had a fever of 102. Which for a heart baby is very high and dangerous. No one is really sure what caused the reaction, but thankfully the nurses gave him benadryl and the next day he was fine.

The surgeons said to just watch him closely again. The goal is to make him last for another 4 weeks and than he will be able to have his second surgery. So it looks like July will most likely be his 2nd surgery. We also got instructions for the summer, to keep Jakey out of the heat. They don't even want him to go outside during the day in the summer, only mornings and evening because he won't be able to handle the heat.

Since we have been here they also did some tests to check his liver, kidneys and everything was okay. They changed his meds a little to hopefully make all the organs work better.

Now again holding us back is his eating. The doctors decided he has silent acid reflux. So he is on medicine for that now. Which I think is helping already, but will take up to 2 weeks or so to completely clear.

Hopefully we will be home Saturday. That is the goal. I love the main doctor on Jakey's case this past week, so that makes everything that much better.

our new house

So you can see where we are living... its funny because when we walked back to floor C5 all the nurses knew us and Jacob by name. So it really is like our second home now.

Sorry I haven't written

Okay, so a lot has happened since my last post. I will try to explain everything simply and to the point.

First off, last week, on Thursday I had Jakey's routine doctors appointment and all looked ok. Jacob lost some weight, but at that time the doctor said we would just monitor him. Than about 2 hours later I get a phone call from my Milwaukee doctor in a panic saying that I need to get to Ohio asap. He was even talking about taking Jacob on the flight for life helicopter! At this point I am like "What??? What is going on? I was just in your office and everything was ok?" But apparently thinking over things and talking to some other doctors, they all decided it was urgent for Jakey to be in Ohio and to have a catherazation done because they thought his weight lose, extra sweating and such had to do with the stent in his arch closing up. So off we all head to Ohio.

Friday at 8:30 am we had an appointment for Jakey's echo and than with his cardiologist from Ohio. Of course Jakey put up a fight for the echo! The results came back looking pretty good. There was no need to urgently run him to the cath lab, but the doctors decided it would be best to keep him over the weekend to monitor him and be on the safe side.

Than the team decided they were going to do a catherzation on Monday to look around and if they see anything wrong they will fix it.

In the meantime I was going through an emotional delimia. Because I wanted and needed to be with jakey at the hospital, but at the same time I needed to be with Isaac and Nico for their last 3 days of school. Isaac was crying that he needed me to be with him. And after much thought and prayer, I decided to go back to WI with the boys for those 3 days to do all the school stuff I promised them a long time ago I would do. Bottom line was that I needed Isaac and Nico to know that they will ALWAYS be very important to me and that I will still ALWAYS be there for them too. I didn't want any resentment to Jacob for taking their mama away from them. (We are now all back in OH- we dr0ve right after school Wednesday.)

this is to be continued....

I am falling asleep writing this so I will share all the finding of the tests and what we are still doing here with you tomorrow!

Don't make me go back yet...

So at our cardio appointment this week, the heart echo showed Jakey's arch, that the stent was put in, is having slower blood flow. So the stent is already starting to close! :( I can't believe it! So my doctor is freaking out, like he always does. But this time, this is a real concern. We may have to be going back to Ohio sooner than later to get another catherization done. But that will only buy us another 4-6 weeks, before surgery needs to take place. So I am getting nervous. I don't feel ready to go back yet.... I am just really starting to enjoy my 3 sons. It is going to be so much harder this time to send Jakey into surgery. I mean, your child is born and you naturally love them like crazy. But the more time we have together, I fall deeper and deeper in love with him. And I need him even more now in my life than I did at first. Because he is mine and I need to protect him and watch him grow into a little man. Somedays I forget that he has so many health problems and everything seems perfect and those are the best days.

But most days I find myself fighting to get him to eat, (especially now that he has a little cold), and tricking him to swallow his meds. Yes, the boy is 2 months now, and is very smart at making you think that he swallowed his meds, but when you turn away... just like that, he spits them out the side of this mouth. He is going to be a handful for the nurses back at the hospital. He still pretends to sleep when he gets nervous and hates more than 1, maybe 2 people around him at the same time. He screams extra loud and still holds his breath when he gets mad.

But anyways, nothing is for sure yet in what is going to be happening the next days or weeks. So no need to panic or anything. I talk to my Ohio people tomorrow, so we will know better than. Lets just hope Dr. Kirkpatrick was overly cautious with his echo reading and that everything is still considered normal.

I really, really want a normal summer with my boys before we have to go back to Columbus.... but I will be ready for anything.

Learning to dance in the rain

So we have been home for 3 weeks today! Its been scary and still is everyday, but I LOVE being with my 3 sons! Jacob has made our family complete. :) So we begin our life long battle with half a heart, but thats ok, we are going to be okay. "Its not waiting for the storm to pass, its learning to dance in the rain."

So far we have been seeing Baby Jakey's cardiologist weekly. He seems like a really nice doctor. You just never want to look at his face when he is performing Jacob's heart echo, because he always looks confused and makes you think something is terribly wrong, when that is just what his face looks like. :) Really though, you know this doctor is very concerned about Jacob. He sees him on a day with no other patients so he can give as much time as needed to Jacob and he has even called me personally just to make sure things are ok.

Jacob is still considered very high risk. The doctor isn't sure if his stents will even make it to 4 months, for the second surgery, but I remain positive. I guess his heart is extra big and therefore is pushing his liver down. Also his breathing is heavier than it should be, so his lungs and body in general is working extra hard.

Eating is still a issue, but he is getting better. It turns out he his milk allergies, so I took dairy out of my diet and we switched formula. We found this out because he was pooping blood. And after being in the ER for a day, the results were milk allergy.

Today I am especially concerned because Isaac and Nico developed a cough over the weekend and Jacob seems to be getting it too. Since we have been home I have been pumping the older boys with herbs, but I guess that did not work too well. So I am off today with more doctor visits to make sure Jacob is ok with his coughing. The bad thing about having so many doctors, is that I am never really sure who I should be calling first.

Life is crazy, but it's all worth it!

Home is in sight!!!

Guess What? We are told that we get to leave the hospital on Monday!!! Let's hope this weekend goes good, so we can get out of here! Baby Jake and I are having lots of last minute tests and instructions... CPR course, (that scared me out of my mind), Dietitian, Lactation Consultant, Car Seat test, Echos, x-rays, vaccines....

Next week should be interesting at home. I'm going to meet Jacob's Milwaukee Cardiologist, his pediatrician, and have my follow up with my OB. Plus, just day to day life. Checking stats and weight. And feeding Jacob and pumping which seriously takes up half the day in its self. But I think I am ready. I have been waiting for this day for what seems like forever.

Another heart stent today

Yesterday night, after a wonderful tubeless day, our nurse came in to inform us that after Jacob's echo our surgeons met and decided it would be best for Jacob to have the stent procedure done soon. So they scheduled us for this morning.

It came as a shock to us since we were told originally we would have more time before it needed to be done. But after lots of questions and worrying it came down to the fact that the surgeon knows best and we need to trust that it is all for the good of Jacob's future.

The hardest thing in the world is to walk your baby down to surgery and have to hand him over to some stranger. This time it was as if Jacob knew what was happening, as the nurse took him into the operating room he was looking back at me and mom with such sad eyes. It broke my heart...again. As a mom you just want to protect your children from pain and its such a terrible feeling not to be able to shield them from it and to sit there and watch or let it happen. So many times I just want to scoop him up and RUN out of the hospital, but of course we don't because we also know it is for his own good and ultimately means his life. But still... it's hard, so hard.

Anyways, the heart cath went well, but we are still in ICU as I type. And we will have to stay here overnight. :( He is pale and his blood count is down (not low, but lower than they would like), so they just want to monitor him closely. He didn't eat much since he has been out of surgery, but the doctors are not concerned since he is still drugged up a bit and his throat is sore from the breathing tube they had in.

Hopefully this will be his last procedure before the big surgery at 6 months. The surgeon put a different kind of stent that has more metal in it, in hopes of it lasting longer in Jacob's heart. But still it will need close monitoring because there is no way of telling when the arch will narrow again and if it happens before 4 months, we will need an additional surgery. We just need to hope and pray for the best.

I want to say thank you to Brother Steve Hearst for coming today and supporting us as we waited for Jacob's stent to be complete. Your kindness is appreciated more than you know. :) We are so thankful to have such a loving brother and friend by our side.

SOMEDAY we will be home. I miss you all terribly. We called in for the special talk Sunday because we couldn't make it to the kingdom hall and it was so nice to hear all the voices of our friends back home. I love you all!

my beautiful tubeless baby for a day 4-28

Just when you think things are going good....

something bad happens.

But first off, Jacob had his heart cath done today. It was just like a major surgery, despite the doctors saying this was "minor". I was scared. He was put under, with a breathing tube down his throat again and we were back in the ICU for awhile. But he came out fine, just really crabby and hungry. (As a good side note, since yesterdays full feeding orally, he has been doing it constantly! So he finally got the eating thing down! No G- tube!!) So as you can see I was feeling pretty good, the cath went good, Jacob is eating.. I am thinking I will be home by Monday.

But than came the bad news. During the catherazation they were able to look more closely at Jacob's heart and they found a new, serious problem. His aortic valve is very narrow. This is the valve that sends the blood out to the brain and back to the heart. The doctors are very concerned about this. They scheduled a meeting with all the surgeons and doctors we have been working with for this Wednesday to talk about Jacob to see if it is safe for him to go home in this condition. So he may need an addition surgery before we leave and if that is the case, we will need to come back again in 6 weeks for another surgery and than continue with the surgery at 6 months and 2 years. :( So I am scared out of my mind!

The doctors may decide we can go home and just be CLOSELY monitored, but that scares me also. We will be needing to see his cardiologist in Milwaukee once a week and have echos done. Which remember, Milwaukee doesn't know anything about the hybrid surgery we had done. And the symptoms to tell if something is going wrong, and the valve is closing are very minor... just not eating quite as much, being paler, sweating more... there is no hard core way to tell if the valve is narrowing more.

So now I am officially scared... I can't say that enough. It's just a lot to take in at the moment, considering I was just thinking a few short hours ago that I would be home by Monday. But I know Jehovah will help me and Jacob be strong.... Jacob is the strongest little boy I've ever known.

Getting sick of all these tubes...

So jacob had a busy morining pulling out his ng tube from his nose. He was so happy with no tape on his face and nothing down his nose.... but of course they had to put it back in again. :( Jacob was not too happy about that! All his hard work for nothing.

Good news though is that after this little incident, he eat ALL 70 mil. orally!!! Happy Day for Jakey! We just need to keep it going.... He wants out out of here ASAP also!

3 weeks old today

After his bath with his fluffly hair! Super cute.

Here is our surgeon! I love him! Thank you Dr. Galantowicz.... you are the best!

I tend not to be posting as much because not much is going on. The only good news is that the Doctor thinks that maybe after Jacob gets his last procedure done (a catheterization that is the last stage of his hybrid surgery) that he might eat better. He sees potential in him because he starts off his feeding so good. He can suck and swallow, he just tires out and can't finish all he needs. So hopefully his catheterization will help his breathing and therefore help his eating. They are putting off the G tube until early next week. So that is good. But than it means that we will also be here in Columbus even longer.

feeling down

So yesterday was a tough day for me personally. First off I had a fever of 102.8 and had to go to urgent care for some antibiotics. Like I don't have enough things to stress about. Than the rest of the day was spent with me trying to rest in the hotel room. So I didn't see Jakey at all yesterday. :( And my in laws were here with Stefan and Adrian and I barely got to spend any time with them either because I was completely out of it.

I'm very worried that Jacob is going to need to come home on a feeding tube. I don't want him to have to have another surgery just to put in a g tube in his poor tummy. :( That would be so sad. He is still only eating 20-30 mil each feed.

Jacob is starting to be more alert now which is nice to see. But yesterday he was getting irritated and ended up pulling his whole feeding tube out of his nose! I am hoping that is a sign that he has had enough of all those tubes and has decided to start eating.

My other boys are going back home today. :( I am going to miss them terribly.

sitting and waiting

We received a YUMMY bouquet of cookies.... Thanks Uncle John and Aunt Sophia and boys!

Trying to eat....

Getting mad at the bottle..

There is no news going on around here lately. We are just waiting on Jacob to get eating.... The doctors are talking about having to maybe leave with the feeding tube still in him, which I really don't want to do. We need to pray for Jacob to eat on his own... please...

So Sleepy all the time..

Sorry I haven't posted the past few days, I have been in the hospital non stop and didn't have the computer with me.

So feeding issues are where we are still at.....
The Doctor decided to lower the amount of milk Jacob needs to eat, now it is 70 mil instead of 90. And they are just fortifying my breast milk with extra calories. Monday night, one time, he ate all 70 by mouth!! So at least we know he CAN do it, but the question remains will he?

Usually he only takes 20-40 mil by mouth and the rest needs to still be tubed. And just that is a constant struggle. All heart babies want to do is sleep... if they had a choice between eating and sleeping they would just sleep, because eating is such a hard task for them. A heart baby alone uses at least twice as much energy than a "healthy" baby just to live... to breathe and for his heart to pump and for him to stay alive. Than we add eating to that, and they are just pooped out all the time. That is why he needs to eat more than a "healthy" baby to gain weight.

Every time I need to wake him to eat (every 3 hours) he looks at me like Why Mom??? And he is so irritated at me. I have to almost force him to do the swallowing motions. You hold his chin up and push his cheek.... than you turn the bottle around and tap it... its a continuous cycle. Than you can't cuddle at all when feeding or else he WILL sleep. You need to hold him way out from your body and just support his head. Its way hard on me, I can only imagine how he must
be feeling??? poor baby.

But everything else looks good, besides his feedings. So once he can take his 70 mil consistently we are so out of here!

I have been having training from the nurses of how I am going to need to take care of him at home. I have this big Rubbermaid container full of a scale, a machine to measure his oxygen stats, a book to record his progress everyday. So if you ever invite us over, everyday before his 6 o'clock feed, we will be bringing out all our big box of stuff for Jacob. :) So be ready for it! Also I have started giving him his meds myself at times. So they are really preparing us to go home.

Still though, it could be weeks. I really, really hope not. But it is very possible. I just hope he doesn't have to go home on any tubing. That is my biggest scare right now. I want him to be able to have a fun, normal summer with his brothers. No tubes of any sort attached for the next few months.

Hopefully today will be a good day and he will surprise us all!

Moving up in the world... floor C5!

Last night we finally got out of the ICU to floor 5! So that was a big step.... The night nurses were not too knowledgeable in knowing how to feed Baby Jakey. So it was a little frustrating to me, because he ate less orally than he did in the ICU.

Its quite different on this floor. We went from the nurses not wanting you to move baby by yourself or change his diapers in the ICU and than we moved and nurses are no where to be seen. And we are in charge of everything! Which is nice in a way, but also kinda scary because it went from all help all the time, to absolutely nothing.

Hopefully our day nurse will be a smart one.

Jacob's last big challenge is to be able to eat those 3 oz of milk. It is said to be a very difficult one, but than we can go home. And I can not wait to get back into a routine at home with my 3 boys!

Robles boy who doesn't like to eat????

Yesterday Jacob started feeding through the bottle! It has been a big day for him. He is having some trouble with it though, as was expected. He only will intake between 5-15 mil. at a time, but according to his weight they want him to consume 60 mil. every 3 hours. That's 3 oz!! Seems like a lot to me for such a little guy.... But the nurses insist that is what he needs. So whatever is not taken orally is put in his NG tube (through his nose to his stomach).

So he is having some problems with gagging, and obviously is having trouble eating orally as much as he should. I can't believe one of my babies doesn't like to eat......yet, that is. I know soon he will be just as chunky as the others when they were small. :) For now they think his problems sucking has a lot to do with his fast breathing. No one can swallow and breathe at the exact same time. Plus his first time ever having something orally is at 10 days old, so it will take a while for him to get used to it.

My mom wants me to tell you the story of how she saved a little boy's life last night. Across the hall in room 3 there is a little 18 month old boy who has been in the hospital since birth. :( In the middle of the night, alarms started beeping and the nurses were ignoring it as if it was nothing. mom looks outside our rainbow curtain to notice the poor little boy laying sideways across his bed, kicking his feet. "Excuse me," she says to our nurse. "I think that little boy is in trouble!" As our nurse rolls her eyes, she heads over there just to take a look. To her surprise, the little boy had pulled off his oxygen mask and tubes!! He couldn't breathe!! Nurses than went running to save that little boy's life. The nurse eventually came back and thanked my mom. Thanks mom for saving a life today!

more progress

Today again went well. I am trying not to get my hopes up, but the doctor said we should be out of the ICU tomorrow!!! Happy Day! Now on to the next big step of getting Jacob to eat.... they say this part is what usually takes the longest with heart babies. I am hoping he'll have his brother's love for food and we won't have a problem.

We left Jacob alone for the first time ever today for about 2 hours when we all attended the memorial together. I so wished to be back home to my congregation with Jacob by this time. I miss home. But the congregation here is so very loving. And we have lots of new friends. It just would have been nice to have had my whole family home by now.... hopefully soon.

more pictures....

These pictures are not in order, but on top is our first family picture ever!!! Below is Isaac and Nico with their brother... being able to touch him and talk to him for the first time. The kids are technically not allowed in the ICU, but the nurse made an exception for today! The boys were so excited. And Jacob loved them being there also. Normally, Jacob breathes way too fast and deep, but when his brothers were their talking to him and sticking toys in his face, he was very content. And his breathing was consistently at the rate the doctors want it to be at. See, as I have been saying, Jacob just wants to get into normal life with his family!

Below is right after the nurses took off his lights for jaundice earlier today and I got to hold my baby!

This is what Jacob looked like under the jaundice lights and with his breathing mask on. Alex called it "the elephant mask." Jacob hated it! Of course! This is what he looked like yesterday.

And this is what he looked like this morning still under the jaundice lights, but no "elephant mask".