So a little while ago, Ben's hr was 209. It went up to 217 at one point. That's when there were 3 nurses, the picu attending (head of picu actually) a cardiologist and a nurse practitioner. That was so scary seeing so many people needed for my baby. They upped his vent beats per minute to 28 then 30 now he's at 34. They upped another setting to 45. But I don't know what that one was for. When we were admitted, his vent Bpm was 40. So we're not far from that. They also paralyzed him and upped his sedation and added another sedation med and upped his morphine. They're also adding back the epinephrine. His hr was down to 192 when I left to let Joe go in there. They also stopped his feeds again. I told the APN, "when he's better from this (because he HAS to get better) can you do 1 thing at a time instead of reducing the vent, the sedation and doing feeds all at once?" it just seems like his little body can't handle all those things at once. She agreed and that's what we will do next time. I just hope his heart comes soon. It seems he desperately needs it now. They said were not at a point for ECMO yet. So that's good. But we may eventually want to discuss the Berlin Heart. I just hate all these setbacks. I want him better quickly!

Another small update. Unfortunately not a good one :( his hr is in the high 190's now. And he has a fever. They're sending cultures off to make sure it's not an infection. Please pray it's not, and that his hr goes down and the fever goes away. And that a new heart comes sooner rather than later. They say the average wait for an infant here is about a month. He's been waiting 2 weeks. I don't know if I can take another 2 weeks of this uncertainty. I don't like that his hr is so high. Or that he has a fever. The fever could just be because he's a hot natured baby. They took all his clothes and blankets off the other day and it went down. The worst would be if he had a virus because there's nothing they can do for that. His body just has to fight it off. And I don't know how much fight his little body has left :( I don't know if he can handle a virus :( bacterial infection, they can give antibiotics. Anything else is all on him to fight. His hr is really scaring me. They're giving him more fluid to see if that helps and increasing the sedation. Pray something helps him!

Ugh, not so great start today. I walked in and Ben's hr was in the Hugh 160's. So, pretty good. But then when he woke up, it went to the high 180's and even to 190. Then he threw up some of his feed. The nurse turned it off, suctioned him and got him cleaned off. She said they'd stop it for an hour and try again. She also suctioned a lot of air out of him. So his hr might have been high because he was uncomfortable. They're taking him off of morphine today. And his vent is down to 18 bpm and a pressure of 16. Joe and I feel like they're trying to do too much at once and his body can't handle that. I'm hoping that since the nurse suctioned everything out, maybe he'll be more comfortable and his hr will go down. One of his nurses made a sign and hung it on his bed it says, "2012. New year, new heart!" that's what we're hoping!

Today was a fairly good day. Ben's hr was still in the 180's which is no good. But everything else looked good. They decided to give him more diuretic to take some fluid off. That helped a little bit. Brought him to the low 180s/high 170s. My friend K. was here today. She said, "I'm not religious at all, but I'm sending you all the good vibes and good karma I have. And also I'm a Sagittarius which is the lucky sign. So I'll give him all my luck." and she rubbed his belly and His hr dropped to the high 160's. It was awesome! I said "yay! Your luck is working already". Too bad she can't come give him her luck every day since she lives in Ohio. But maybe some of that luck worked and he will recover or get a new heart immediately. One can hope. Luckily, I only have a cold. Nothing more serious. So I can still see him as long as I wash up really well and wear a mask. Totally worth it to see my baby. I was so afraid it was pneumonia or something and I wouldn't see him for weeks. Still praying for our miracle for my little guy!

I just wanted to clarify something. Joe told me that some people thought that Abby and Klara's PDA was the same thing Ben has. Abby and Klara's problem has nothing to do with what Ben has. Their problem is something that is easily corrected and even if left uncorrected will not affect them for a long time. This is what it is: http://www.mayoclinic.org/patent-ductus-arteriosus/ It's very rarely seen in full term babies, but it's not something that is fatal right now. The doctors are not concerned at all, which is why they said we can wait to get Abby's fixed until Ben is better. If they were concerned, they'd have us go in to get it fixed right away. Ben's diagnosis is idiopathic dilated cardiomyopathy. Ben had all the symptoms in this article. But I never thought to check his pulses and the breathing problems didn't start until we were on the way to the dr. Basically, it's where the heart can not pump blood efficiently enough and becomes enlarged. This can cause decreased heart function and even heart failure which also affects other organs. Ben's is bad enough that he went in to cardiogenic shock when we were first admitted. His heart was not perfusing enough blood to the rest of his organs. So he was cold and had weak pulses and high hr and low Bp. This is obviously nothing like what Abby and Klara are like. They are running around here playing every day. The dr just wants Abby to get hers fixed so she doesn't have problems in the future which, if left uncorrected, can happen in her 40's or later. Obviously Ben's problem is of a more serious nature and needs correcting right now. There's no danger of Abby needing a new heart because of her PDA. I hope that makes sense. I don't want anyone thinking we will need 2 heart transplants. I think it sucks that Abby will need to undergo the cardiac catheterization to fix this. But, I wish that's all Ben had to undergo to fix him. His will be a lot more invasive fix, unless we get a miraculous recovery. Which I would also love! But if not, I would also just love him to get his new heart!

No major changes with Ben since this morning. He's been relatively stable. Unfortunately, we got some not so great news on the girls echos. They both have PDA, or patent ductus arteriosus. Neither one is emergent. Abby is slightly worse than Klara. She will need to have cardiac catheterization to correct it eventually. The drs said it can wait until Ben is better though. And they'll probably just monitor Klara. Hers doesn't seem to need to be corrected at this time. Basically this little valve that usually closes at birth didn't close with them. It's very rarely seen in full term infants. And I have 2 post term kids with it. Just my luck. :/ but like I said, the drs are not worried since neither if them show any symptoms. Oh, in good news, I got to help bathe Ben and change his diapers today. I loved that! I did not love him crying silently about it. But I did like getting to do the normal baby things. That was the best. Now, if I could just get rid of this sinus congestion. I've been really washing hands and wearing a mask. Luckily, I didn't get the flu my sister has. She and my mom are both so sick they haven't been able to visit. I just have congestion. So I've been taking nasalcrom, garlic pills, and zinc lozenges. I'm starting to feel a bit better. So that's good. Hoping for an even better day tomorrow.

So the drs went down on the pressure setting on Ben's vent today. He was at 19. Now at 16. His beats per minute is still at 20. They also upped his feeds to 5 ml an hour. But he has 4 hours worth of feeds in his belly right now. :( the nurse is giving him until noon to move some of it out and then she will give him a suppository to try to help. His hr is in the 180's again :( probably because his belly isn't moving things along. I feel like they keep trying all these thing at once and then it fails because it's too much at one time. I feel like they should try one thing at a time, and the nurse (M., our favorite) agrees with me. At least they didn't fortify the breastmilk this time. I feel like that may have added to the problems last time. Everything else looks good though. So just more waiting. I went on the UNOS website last night. For a child under 1, the wait time for a heart is 70-90 days. I don't want to wait that long! I mean, it can be shorter. But that's the average. I don't want to wait that long. I want him better now!

So today has been pretty good. Ben's hr has been 160-170. The nurse said that until they are 6 mths old, babies hr can be up to 180 and it's perfectly fine. But they like to see it 130-150. That's more of a norm. Especially when sleeping. His was 160-170 even when sleeping today. So, not horrible but not where they want it. They decreased his vent settings a bit. Down to 19. And they decreased his sedation. So hes more awake now. Which is good, but he also gets frustrated he can't spit the vent out. And then his hr goes up. They also started small feeds again. 3 ml an hour. He seems to be tolerating it so far. Of course that's like a tsp an hour. But they don't want to stress him out too much. In other news, Abby and Klara had EKG and echos today. They want to make sure whatever's going on with him isn't hereditary. God, I don't think I could deal if they had this wrong with them too. Good thing is, they've shown NO symptoms at all ever. So they should be ok. That's all for now. We're hoping for continued good days and a new heart!

So Ben had a great day today! His hr never went above 160 while agitated. It stayed 140-150 most of the day. Which is awesome! His vitals are all looking stable for today. They might try to feed him again tomorrow through his ng tube. They're not going to lower his vent settings again anytime soon though. I guess one thing at a time, right? It seems like its one step forward and two back these days. :( but at least he's doing well for now. We keep praying every day for a heart to come so he can be healthy and we won't have such anxiety over what will happen minute by minute.

Not a great day for my little guy :( I walked in today to the news that his heart function is worsening. I just started crying. That's not what I wanted to hear. :( they were talking possibly doing ecmo ( the heart lungs machine). But, after I talked to the dr he said that's not where we are yet. Yes, his heart function is worse based on his bnp ( which I forget what that stands for) but the rest if his numbers looked good. Since those looked good, they're still watching his bnp. But they are not overly concerned yet. They did stop his feeds though and put him on iv fluids instead. His body was not tolerating feeds due to the worsening bnp. They also upped his sedation to a continuous drip instead if every 4 hours. They also upped the vent again to 24. All that being said, everyone who sees him says how good he looks. And he does look good. Like a regular baby. Just with tubes coming from everywhere. :( now, the dr did say, his bnp numbers *could* drop again. It could get better. It has gone up and down since he's been here. It just hasn't been this high since he was admitted. :( but, of his other numbers like his Bp, his hr, or his blood gasses start getting worse, we will need to weigh the risks and benefits of ecmo. Which is never a good sign. They want him as strong as possible for the transplant. And just because he goes on ecmo doesn't mean he wouldn't come off of it. Once he gets his heart, the nurse says she's seen babies go off of it within a week. Apparently, it's good this happened as an infant. Babies are much quicker healers. And they can accept an organ from any abo blood group because their immune system is so immature. So, that's a couple good things he has going. I just continue to pray that he gets a heart soon. He desperately needs it. Thank you for all the continued prayers.

Some good news and some not so good news. Ben's hr looked awesome all night and today. 140-160. So that was great news. The nurse said his hr was probably elevated yesterday due to belly pain. He passed a lot of gas and pooped yesterday. So, since he's not in as much pain, his hr came down. They also upped his sedation a tad. So that's helping things too. The not as great news, he's not tolerating feeds. His belly is not digesting it. So, they are stopping feeds for now so his belly can get a rest. After a couple days of rest they'll try again. They don't want him to have pain and his hr to get elevated again. In other news, Cardinal Francis George was here today and blessed him. I've read that every transplant patient that gets blessed by Cardinal George, receives their organ within 24 hrs. So we are crossing fingers that happens here too!

:sigh: more setbacks. Nothing too terrible. But any setback is no good. Ben threw up 3 times today. Which is not good. They have to suction him out every time so he doesn't aspirate. They said it could be due to the narcotics he was on. Which the narcotics could also be stopping him up. He did poop once today. I never thought I'd be so excited to see poop. They're also increasing his sedation and one of his vent settings. They're hoping that it helps calm him and make his hr go down if he doesn't have to do as much work. They're also giving him suppositories. And the equivalent of miralax to get him to go. His fever is gone though. As is the sweatiness and claminess. So that's one good thing. I wish he would just get better. I think the best birthday present to me (my birthday is valentines day) would be to have my baby home and my family all together.

So, another setback. Ben's hr is up even more. And he's clammy and sweaty. He also has more secretions. And they're a bit yellow. He has a low fever too. So they're thinking maybe an infection. They'll send it off to see. He can still get his heart even if he has an infection. But an infection is never good. :( also he has air in his bowels. They're not worried since he's still pooping. But if he stops pooping that could be bad. They said something about an ileus. But I was still reeling from air in his bowel and sweatiness and fever. So I didn't really understand. I have a migraine too, but because of all this, I'm afraid to take anything besides Tylenol. I'm checking to see if my Tylenol 3 is ok with his meds or if I should just save that breast milk for when he's better. I just want his new heart to come. This is such a sad Christmas. He keeps crying and there's nothing I can do but rub his head and hold his hand :(

So, they started Ben on blood transfusion. They're hoping the increased volume helps his hr lower. Plus it should help oxygenate his blood and help his heart. It was slightly lower. High 160's instead of 180's. I guess it's something. I'm so sad about Christmas. We can only have 3 people in his room at a time. So obviously we can't do our big family Christmas in there. I hate thinking of him all alone while we do Christmas at the kohl's house. It breaks my heart. I think I'll stay with him. He is part of the family and should have someone with him :( someone asked about a picture. I have pictures on my phone, but can't figure out how to get them from my phone to the caringbridge page. If anyone know how, let me know! We're still praying for a heart. That would be the best Christmas present of all! Except for his elevated hr he is looking ok. They took him off morphine and versed. And switched him to Ativan. Of course if he's in pain or needs it he can get morphine or versed. But he's not in a continuous drip of it. So that's all for now

Waiting on the drs to do rounds. Ben's hr was up all night long. When he'd get agitated it would get to almost 190! It would eventually come back down. But only to like 170. Which is still too high. They have him a ton of sedation and pain meds. But that still only brought it to the 160's. Everything else looks good though. So, they're going to talk during rounds and see if he needs a different sedative, less diuretic, or is this possibly his new normal. I'm still waiting to hear on that. It's scaring me though. I don't like his hr that high. Of course I don't want them to have to paralyze him again either which could be an option if they think the hr is because he's working too hard. Just waiting for the docs now :/

2 steps forward, 1 step back. That seems to be how it goes. Last night they upped the sedation level because Benjamin couldn't calm down when they would do anything to him. Just changing his diaper caused his hr to be in the 180's. For reference, they want it below 160 when awake. 120-140 when asleep. Today it's been in the 160's when awake and 150's when asleep. So, better but not great. They also changed his diuretic. They don't want him too dried out because that raises his hr too. His vent is back up to 20. So as not to stress his heart out too much. I hate all these little setbacks. I want him to get better! I have been praying for his new heart to come. I have also been seeing the chaplain to try to help me come to terms with the fact that another baby has to die for that to happen. Yesterday, a lot of tears were shed. I just want my baby healthy. I pray every day that he will just get better, and if not, that a new heart will come. We've been here less than 2 weeks( though it feels like much longer!) and I've heard them call codes 6 different times. 2 times was for the same room! It's so scary. I don't want Ben to ever warrant that kind if attention!

We've had another setback. Ben's hr was elevated much of the night. As soon as the sedation would wear off, he'd get agitated again and his hr would go up. They bumped his vent settings back up to 20. He was not tolerating the lower settings very well. It doesn't mean he won't tolerate it once he gets his new heart. But with his heart so sick, he just can't tolerate the stress load right now. It hurts so much to know we're going backwards. He was doing pretty well for a while there. Now they're trying to keep him sedated for much of the time so he doesn't get stressed out. I hate this! He's supposed to go for an MRI of his brain tonight. They won't do it though if he stays in this higher hr range. It was just to basically get a baseline for after transplant. But it's not worth the risk if his hr is elevated. We REALLY need a new heart. Like right now. I'm getting so scared. They're talking to me again about the possibility of the heart lung machine. This is too scary! I just want my baby home. One good piece of news, the girls school has given them a full scholarship for the duration of Ben's stay. So that's one less bill to worry about. Please keep praying that Ben gets his new heart very soon!

So we've had a little setback :( they decreased a setting on his vent this morning in preparation to extubate. Well, when they did that he started sweating. Enough to have to change his sheets. Then they had to change his diaper and suction him. He did not like that. His hr increased. Which is normal. But it wouldn't come back down :( so, they had to give him some sedative and morphine and increase the vent to give him more support. His gasses were a little low too, which is bad. I hate that he can't be extubated today. But of course, I want him to be safe too. This sucks! They're going to try again tomorrow and see how he does. Our favorite nurse is back on tomorrow. Hopefully she can work her magic with him and help get that vent out. Sad that we've been here long enough to have a favorite nurse :/. Joe is with him right now and he said he is wide awake and calm. Which is great. I am so nerve wracked. Each day that passes with no heart I grow more anxious. I just want him to get his new heart and come home.

So far so good for today. They're still slowly weaning the vent. His setting is at 12. Down from 40 when we were admitted! They're doing it slowly so they don't stress his heart. He had a bit of a tachycardia episode and they had to sedate him so his heart rate would go down. It happens a lot when they move him to another side or change his diapers or suction him. They did all 3 of those and he got mad. I can usually calm him. Or Joe. But, I was pumping and Joe was getting me Starbucks. They also put a note in his chart not to swaddle him. I came back and he was swaddled and pissed. Lol. So I told them he hates that. They un-swaddled him and his hr started going down a bit. So she said she was putting a note in his chart in big letters. That's the 3rd time he's been swaddled and I had to tell them not too. So hopefully that helps and no one else tries it. He's having another echo today. They want to see if his heart is tolerating the weaning. Hopefully it is. If it isn't, they obviously won't extubate him until it's able to be tolerated. So we're waiting for those results. His carbon dioxide levels are a little higher. But she said that's to be expected as they wean him. And it will go down when he's able to actually cough and get stuff out. That's all we know for right now.

Today has been a pretty good day. Ben has been sleeping most of it away. But his vitals are all good. The one little scary bit, they weighed him today and he got pretty mad about that. His hr went way up. To like 190. Which, we can't have. I kept trying to get him to calm down. You could tell he was crying even though he wasn't making any sounds. That was so sad :( they gave him some morphine and he's sleeping again. They also gave him on ativan so hopefully he won't be so anxious. They say getting that breathing tube out will really help his stress level. I'm still praying for my Christmas miracle. Though, I'm trying to wrap my brain around how to pray for a heart. That means another baby has to die. Which makes me sad too. But I can't have my baby die either. I just don't know how to reconcile that in my heart or head. The dr told me he can take a heart from a child twice his size. So, that means up to 24 lbs. that became more real to me because Klara is just 34 lbs. So, that's like a 2 year old sized. That hurts my heart too. :'( but still , I am praying for a heart to be available soon so we can all go home and be a family of 5 again.

So Tuesday, December 13, was pretty chaotic and hectic as well. We had a few temp spikes, his Bp dropped. His hr was in the 200s when it should be between 130-150. It was so nerve wracking. I told Joe I wasn't sleeping until he came home. This was me still thinking this would be a quick fix :(. I did end up crashing for a couple hours. I could barely leave his side for fear of something happening. We had some awesome friends helping with the girls. One friend picked them up from school and delivered them to another friend. They spent the night there a couple of times. We are so thankful for that. We kept hoping he would just heal on his own. But every day from Tuesday-Thursday his echo came back not good. The way they explained it is the top chamber is working but the bottom chamber ( which pushes blood out) was hardly moving. They kept mentioning transplant. But they were giving him to Friday to see if he'd recover. Well Friday came. We met with the drs. His echo was slightly worse. :'( he was definitely going on the transplant list. My heart sank. I had hoped that his improving vitals meant he was improving. Well, he is getting stronger but his heart is getting weaker. The weekend brought even more strength in my little fighter. He has tried to take out his ng tube and once disconnected the vent. He should be happier by tomorrow. They think he may be strong enough to be extubated! We ate so excited about this! He still needs his new heart, but he's getting stronger. Which, we want him as strong as possible for the surgery. His sisters have so many questions about all this. We have a specialist that will explain everything to them on wed before they visit. We just talked to the transplant pharmacist and he will go home on between 8-12 meds. We'll want to talk to the girls about that too. That's as much as I can remember right now. I will add more later.

LifeStar-1, the BK-117 helicopter that transported Ben.

On Monday, December 12, 2011, my world fell apart. What started out as me thinking Ben had a stomach bug quickly became more. I took him to the pedi where they became concerned about his breathing. They gave him a breathing treatment which didn't work. So, we got sent to Edward Er. His temp was 95.8 when we got there. So they treat that the same as a fever. This meant lumbar puncture, cath for urinalysis, blood gasses, chest xray, EKG, blood labs. I thought that was bad. Watching my baby go through all that. Little did I know it would get so much worse. They got him stable in the er and sent us up to picu for a mandatory 48 hr stay. I thought "ok this is hard but I can deal." well it went downhill from there. His breathing started getting worse. So they intubated him. Then his heart started looking bad in the EKG. So they did an echo and discovered it was enlarged and causing his other organs to start to fail. The cause of this, was Dilated cardiomyopathy. They were going to transfer us to Lutheran General because they have a heart lung machine, called ECMO there, and Edward does not have one for babies. Then the icu dr decided Children's Memorial in Chicago would be better in case he needed a transplant. It is the worst thing to hear the word transplant in reference to your 1 mth old! I nearly passed out. They were preparing me for him not making the 15 min helicopter ride there. He was in cardiogenic shock at that point. I started hyperventilating at the thought of losing my baby. And not even being with him since I was not allowed on the helicopter(weight limits). Joe had to support me. I couldn't breathe. The chaplain and Joe helped me out. Joe drove 100 miles an hour. We got there before the helicopter. My sister met us there. And, my mom drove in from Indiana. She got there at 8. My 2 aunts were there by 5 am. We had gotten there at 3:45 am. When he arrived here it was very touch and go. He was grey. But they got him pinked up. And stabilized him as best they could while letting us know he was very critical. So that was my Monday and Tuesday morning.