He came out crying and screaming, which was a reassuring thing for us. He scored well on his initial tests and we were happy that we could see him before they took him back to the NICU. Matt got to follow him back while they finished sewing up Dawn.

We didn’t get to see him much today – just a couple of visits. He was being closely monitored and watched in the NICU all day. The doctors did an echocardiogram to take a closer look at his heart and see more than they could with the ultrasounds before. They confirmed that he has ventricular inversion (which was already obvious) and a small VSD (a hole between the ventricals of the heart). Both of these are things that won’t need any corrective surgery or anything. The VSD will probably be looked at as he gets older to see if anything needs to be done about it. What they did find that was unexpected for us was a coarctation of the aorta. This means that his aorta, which feeds blood to the body from the heart, has a section that is smaller than it should be, making his blood flow to the body less than it should be. If this was correct, they would definitely need to correct it.

In order to confirm it, they decided to do cardiac cath. They put a small cath up through his belly button and injected dye into his heart, then monitored the flow from outside. The risks of this procedure were outweighed by the benefit of confirming the diagnosis and having a better picture of what they needed to correct. The doctors and surgeons talked to us at length about the issues and risks tonight before taking him to the operating room for the cath proecedure. The pacemaker operation is scheduled for the first thing in the morning.

Dawn is holding up very, very well and recovering quickly. She’s amazingly strong and brave, as everyone knows. She was standing and starting to walk around a little bit tonight.

We got good sleep last night and woke up early to go visit Kevin before surgery. The doctors told us this morning that the procedure last night confirmed that Kevin needed surgery to correct his aorta. However, they aren’t sure they are going to do it at the same time as the pacemaker surgery. They want to stabilize his heart with the pacemaker first. Then while they are in surgery they will see if they can get access to the aorta like they need in order to correct it. That will consist of snipping off the blocked portion of the aorta and sewing it back together. If they can’t get good access or they decide that he isn’t stable enough to do the aorta surgery, that will be done a few days later. We won’t know the decision until surgery is complete.

The pacemaker surgery is not open-heart and not as risky as it might sound. They implant the small pacemaker device (about the size of a half-dollar and maybe 1/4″ thick) in his abdomen, then run wires up to his heart and sew the leads on to the outside of his heart. The pacemaker will receive signals from the top of his heart and signal the bottom of his heart to beat in sync with the top. By itself, a pacemaker doesn’t limit a child much at all. He just won’t play football or any contact sports (except maybe Madden 2015 on the Playstation 5!).

12:00 noon: Just got an update from the doctor who said that the surgery started a little later than planned, and they’ve just completed repair of the aorta. They decided to do this first after much discussion between the surgeons. He handled it very well. They are now beginning on the pacemaker surgery, which will probably take another hour or two.

1:30pm: The surgery is complete and they are finishing things up. The pacemaker surgery went very well and his heart is functioning as expected now. No problems at all in surgery and they said he was very strong throughout. They expect to remove the breathing tubes in a couple of hours and he should remain strong. The doctor said that they expect him to be ready to leave the hospital in about a week or so, depending on how he does in recovery. We will be able to visit him in a couple of hours, but I’m not sure if they’ll allow any other visitors for a while.

5:00pm: We just visited Kevin again and he is looking a bit better after his surgery. He still has lots of wires and tubes in him but the doctors have reassured us that everything is normal and he is doing well. There is almost always a nurse or two in the room with him checking on things, and often there is a small crowd of 5 to 10 people in the room checking different things. After a few days, they said he would be moving down to a different area in the cardiac area and out of the PICU. For now Dawn and I are enjoying some peace and quiet in our room and will take a quick nap after dinner, as we are both fairly exhausted tonight.

10:30pm: We checked in on Kevin before bed tonight and the situation was about the same. He’s breathing a little more on his own now, but he is still hooked up to the ventilator for now. He hasn’t really woken up yet since he was so heavily sedated during the surgery, but they expect him to start waking up and being a little more active sometime tonight or tomorrow morning. We haven’t seen his eyes open yet, so we’re looking forward to seeing him with a little more life in him. We’re really looking forward to just being able to hold him for the first time, but that might still be some days off… Tonight we will get some good rest and see what is in store for us tomorrow.

9:30am: Kevin did fine over night, we are told. We went to see him again for a while this morning and talked to the nurses and doctors. They said his labs looked really good this morning. He’s still on the ventilator, but he is over-breathing it most of the time, meaning he is breathing on his own at a faster rate than the ventilator is set at. He hasn’t really woken up yet this morning, but he does move around a bit more. Dawn was tickling his feet and got him to move his legs around and open up his eyes a little bit, but then he goes right back to sleep. Hopefully he will be taken off the ventilator today, but we haven’t been told either way yet.

11:30am: We got a visit from Dr. Pyevich today, the pediatric cardiologist who first found Kevin’s ventricular inversion and was the driving force behind a lot of his prenatal care. She was surprised to hear about the coarctation of the aorta, as we were, but she was glad that Kevin was doing well. The latest from the doctor about the ventilator is that it will probably be out tomorrow rather than today. Since his lungs were found to be immature from the amnio 2 weeks ago, that may be why he needs the extra ventilator time. It’s probably a good thing that Dawn went through all the effort for the steroid shots to make him as strong as he is. He’s responding a little bit more, but he’s still not ‘awake’ or active at all. We’re anxious to see him progress forward, but it hasn’t even been 24 hours since his surgeries, so we are also trying to stay realistic.

10:00pm: We just spent a couple of hours up in the PICU with Kevin and finding out more of what is happening. Things are still stable, but there are some new concerns. His heart rate is a little higher so they are wondering if he might have an infection. They are giving him some antibiotics just in case and doing some more tests to help determine if that is a problem or not. He’s not urinating much, which means his kidneys may not be functioning as well as they should. This could be because the heart was not pumping as much blood to the kidneys before birth (due to the lower heart rate and aorta coarctation) and also because they had to clamp off the aorta during his surgery. Tests also are showing that there are higher amounts of acids in his blood, which could be caused by a few different things such as his kidneys not functioning fully or an infection in the blood. A few different medications are being used to address some of these concerns and they will know more tomorrow about what the root causes might be. If the kidneys don’t start working better, they might have to consider dialysis, but that would be a few days off. I think we will know a lot more tomorrow. We are a bit worried that things might be getting a bit worse, but it’s hard for us to get an overall picture of what is going on. The doctors say nothing is critical or sending off alarms at this point, but they are watching more closely and trying to figure out what is going on. We will post more tomorrow as we get additional info.

9:30am: We were told that Kevin had a rough night, but had a better morning. They’ve increased his ventilator activity so that is doing most of his breathing for him. This isn’t because he can’t breathe on his own, but so his body can get more rest. The nurses still describe him as ‘stable’ rather improving or getting worse. They said they are focusing on keeping him stable and not worsening. They’re doing an ultrasound now to take a closer look at his kidneys and other things to look for anything wrong. We’re doing our best to stay positive, but we didn’t expect most of these complications, so it’s kind of tough right now. Hopefully they will figure out what is going on and he can start improving!

11:00am: We met with the doctors during rounds this morning to get the status. The ultrasound showed that his kidneys and liver all looked normal, which is a relief. His is urinating much more. In fact, he wet through his diaper and his sheets, so they had to change them. We’ve never been happy that our child has wet through sheets before! 🙂 The doctor said that his case is still kind of a mystery right now. They aren’t sure why his heart rate is high. The main concern, though, is that his lactates are high. They suspect that this is caused by his intestines having some troubles. The doctor said this is not uncommon and there is literature to show that patients with a coarctation of the aorta often have some problems in this area. The intestines are used to a different kind of blood flow, and when this coarctation is fixed they suddenly start getting a more pumping of blood, which they don’t always like. Apparently this often fixes itself, but it takes time. Meanwhile, they are testing everything else they can think of to rule out other causes. They are watching his lactate levels closely and if they see them plateau, that will be a good sign.

Dawn is being discharged around noon and is doing very, very well. We are now going to be staying at the Ronald McDonald House in room 119, which is just a few blocks from the hospital. It is super nice place to stay, and Emily will be able to stay with us over the weekend. My sister Kathy is staying with us to help out while we are there, since she has stayed there with her daughter Elyse.

3:30pm: The pacemaker doctors came in to check on Kevin’s pacemaker and tested the leads and made sure things were functioning correctly, which they were. They lowered his ventricular heart rate a little to see if his body is more used to the lower rate and might adapt a bit better with it set lower. They will check back in a couple of hours. The doctor said his lactates were looking like they might be starting to plateau, which would be a great sign. They had to monitor it some more to be sure, though. The most recent x-rays of his gut look all normal with no signs of problems like air in the walls of his intestines (I forget the name for that!). They checked on the repair of his coarctation and said that it looks perfect – no scar tissue, etc. His lactates are still the primary concern, because they said all of his other labs are looking very good. One doctor said that he has been through quite a lot right after being born, and he is a sick little guy, but he’s doing well.
We’re settled into the Ronald McDonald house now and Dawn is supposed to be getting some rest. Emily will be coming up soon to stay with us for a few days, which will be very nice. It’s hard to describe the kind of isolation and separation from normal life that happens even after only being here for a few days. We’ve missed Emily a lot and it will be so nice to have her around for a while.

9:00pm: No changes reported in our visit before going back to the Ronald McDonald house for some sleep. Things still seem to be stable. He’s getting a bit more fluids, so he’s a little ‘puffier’ tonight than he has been in the past few days, but that is to be expected. We will try to be back here tomorrow morning for the rounds again to see if the doctors are seeing any changes or if they are going to change his treatment at all.

10:30am: Kevin had a stable night. His lactates are up a little bit today but they are doing labs again this morning to see if that’s still the case. He is still pretty puffy, but he looks a little bit better this morning. He had his eyes open when we came in and looked right at Dawn (I have a picture which I’ll post when I have access). This was the most awake we’ve seen him, so it was nice to see his eyes for a little bit. Then they gave him some more pain meds which put him out again. Otherwise, there is not much new today yet, still stable and still trying to figure out the lactates.

5:30pm: We went back with Emily to see Kevin in the afternoon but otherwise we have spent the afternoon getting some groceries and other supplies since we’ll be here longer than planned. Since it seemed like a pretty stable and uneventful day for Kevin, we thought it would be good for us to get a bit of rest and relaxation, also. We will head back to the hospital tonight after dinner and post an update later tonight.

7:10pm: His pacemaker has been moved back from a consistent rate of 150 back to variable, and it’s currently in the 160’s. That’s a good thing, as it was in the 180’s earlier and they wanted it to go down. His blood pressure is also up a bit, which is something they wanted to see happen. He is still peeing quite a bit. All are good signs. He’s a bit more wiggly and responsive, opening his eyes every so often to look around. We have a good feeling, like he is doing pretty well.

9:00pm: We talked to the doctor currently in charge of Kevin, and he was pretty positive. He said that he’s definitely doing better. He said that some babies just don’t deal as well with heart surgery as others, and it looks like Kevin just didn’t like it at all. His lactates are at the lowest levels they’ve seen so far, and he doesn’t expect them to go back up or anything. His echos of the heart continue to look good, his x-rays don’t show any problems, and his ultrasounds all look fine. It just sounds like he’s taking longer to recover than they expected, but they don’t see anything critical or unexpected at this point. The doctor thought that they would probably have him off the ventilator by monday or tuesday, possibly earlier. At that point, he will move down to the pediatric cardiology floor and will be out of intensive care. That will be a good day 🙂

10:15am: Kevin had another stable night. His lactates are still high, but they have gone down a bit more since yesterday. They are continuing to work on reducing his fluid levels. They plan to put him on his belly for a while in a little bit to help with that. The progress appears to be slow and steady.

8:15pm: We haven’t written much today because there hasn’t really been much to write about! He has continued to be stable, with slightly improving lactates, heart rate, etc. The alarms on the monitors rarely go off anymore, compared to every 2 minutes before. It’s much more peaceful sitting there with him without looking up at the monitors every couple of minutes to see what alarm he is setting off! His temperature was up a bit today but the nurse thought he might just have been under the warmer a bit too long. It has since returned to normal. Emily got to visit again tonight and even got to pick the blanket they will put under him tonight after his 4am bath! She picked the puppy blanket, of course. His swelling continues to go down and he is looking more like himself.
There was a lot of concern today with a little boy two rooms down from Kevin. We don’t know what exactly was happening, but it was very serious, the parents were in the hall crying, and we were not allowed to enter the PICU. The surgeon operating on the boy was the same one who fixed Kevin’s coarctation. I think things may have turned out okay for him today, but it did remind us that the kids in the PICU are some of the most serious cases in the city, state, and in some cases the nation. We feel so grateful to have Kevin in the hands of such experts, and to have him continue to improve. Not every parent in the PICU gets promising news each day. We’re very thankful.

10:00am: Everything is still status quo. His lactates are up a little bit again this morning, but the doctors didn’t seem to be really concerned about that. His swelling is looking a lot better every day. He opened his eyes pretty wide this morning and looked around for a bit at us. We talked with the surgeon who actually did his surgery and said that most of what is happening with Kevin is fairly typical and expected in premies and heart patients, and that it’s just going to be a slow road to recovery. Reducing his swelling and getting him off the vent are still the priorities, but we didn’t get any update on the expected timeframe for that. Once he’s off the vent, they will slowly begin to feed him and see how his intestines handle it. There may be parts that are still not all the way healed, so they will start very slowly and cautiously and monitor him as he begins eating.

10:15am: The nurse just gave us another update after rounds – They are probably going to start feeding him tomorrow through a tube in the nose. They have reduced his blood pressure medication and reduced his diuretics. She thought he might be off the ventilator mid-week rather than monday or tuesday. We’re not sure what that means for our overall stay time, but for now we’re expecting to be here at least until next weekend. It’s like a mini vacation that we don’t want to be on 🙂

7:15pm: We just got here to spend some time with Kevin this evening. The nurse said everything has been fine all day. They lowered his morphine to see if he would wake up a little bit more. His blood pressure is still fine without medication and he is still peeing well. We are still staying at the Ronald McDonald house but we might move to a room at the hospital if one opens up. They have a guest house right here in the hospital that would be more convenient for us (no driving back and forth) but there aren’t openings right now, so we’ll wait and see. My sister Kathy who was here helping us out since Wednesday went home today, as did Emily and Kristel. It was really nice to have the company over the weekend and to spend time with Emily. Dawn is continuing to recover from her c-section and is doing very well.

10:00pm: Kevin continues to rest comfortably. His ventilator was turned down to a lower setting so he has to do more breathing on his own. They will continue lowering it a few times each day until he no longer needs it. We figured out how to get music to play in the room so now he has nice soothing lullabye music to listen to. He opened his eyes a bit more than usual again tonight and seemed to look right towards Dawn when she was talking to him. Although he is still sedated, he definitely seems more aware of his surroundings.

9:15am: Another stable night for Kevin. They have turned off his diuretics completely and have also turned off his morphine, so he might be waking up a bit more this morning. He had some more fluids added this morning because after all his fluid going down over the past few days, he got a bit low on some of the numbers. His blood pressure is at a good level this morning and his heart rate is down a bit. We will probably have more information after the morning rounds in a little while.

10:15am: Rounds are finally done and we got to hear the latest news. Everything is still looking positive, but moving ahead a little slower than originally planned. He will probably be first fed mid-week instead of today. He still has some excess fluid around his chest and a few other levels are a bit off, so they are waiting for those things to stabilize before starting with feeding. The doctor’s optimistic estimate is that he would be leaving the PICU by the end of the week, then move down to the pedatric cardiology unit without a ventilator. We are disappointed that things are moving slower than originally planned, but we trust that the doctors know what is in his best interest. He continues to rest comfortably. He should start to wake up a bit today, but if he gets mad or looks like he is in any pain, they have morphine available that they can give him.

4:00pm: The doctors are now removing the line from his belly button and will put one in his leg instead. This will go up through his veins to near the entrance of his heart. Everything else remains the same since this morning. I will post some pictures later tonight.

7:30pm: No news, everything is still pretty much the same. They put an IV in his hand and got the line in his leg also. The one in his leg will stay there until he’s ready to come home. They also got the belly button line out. One thing Dawn and I have both noticed is that there are far fewer bags hanging from his IV these days. They also cleaned out a bunch of the old tubes that they had hooked up from the IVs so from our view it certainly looks like he’s hooked up to less stuff! He’s sleeping and currently listening to James Taylor over the speakers 🙂 I posted a few more pictures.

10:30pm: We’re packing up and heading back to the Ronald McDonald house for the night. It’s been quiet and Dawn got some sleep here. We’ll be back in the morning, hopefully in time to catch rounds to get the latest information. Kevin has been sleeping and listening to piano music all night.

10:45am: We slept in today to get some extra rest, so we just got into the hospital a little while ago! Kevin continues to do well. They reduced his ventilator rate some more today – down to 22 breaths/minute from 28 last night. They will continue to reduce it today. They put him on some diuretics again to try to make him pee off some of the extra fluid he still has around his tummy area. But when they do this, he also pees off some electrolytes which they need to replenish. So it’s a fine balance of trying to get fluid off him, but also not let his other fuilds get too low. It just takes time. He looks a little puffier this morning because of this extra stuff they are doing, but nothing like a few days ago. They did an x-ray of his belly to make sure there was no air being leaked from the intestines, causing his tummy to be distended, and everything looked fine. We plan on hanging out here most of the afternoon and will updated again when anything new happens.

11:10am: We got a chance to talk to the doctor who explained a bit more of the process to us and what they are working against. Dawn and I are trying hard to understand all this medical stuff, but we are far from doctors! I know some of you reading this have medical backgrounds, so hopefully you aren’t catching our technical errors! 🙂 The doctor basically explained the fluids to us a bit more, that some people have prolonged reactions to any kind of bypass surgery which results in greater fluid retention. It’s a balancing act of trying to get the extra fluid off him a little at a time and letting his body compensate inbetween. They take off as much fluid as they can, then they have to wait for his body to be at a state where they can take more off. They want his fluid to be down a bit more before they take the vent off, but that may happen tomorrow. They are also fighting his acid/base balance, and his breathing plays a part in that also. So it’s a slow process of moving 3 steps forward and 1 step back to get to the point where he’s recovered. He also said that once the vent is removed, many patients start peeing better. They don’t know why, but when his vent comes off that may help also. Currently Kevin is resting comfortably and listening to Vivaldi’s Four Seasons.

1:00pm: They “bagged” Kevin to fully inflate his lungs, then drained some of the stuff that has accumulated in there. They thought there was a chance that one of his lungs might be collapsed a bit, but that turned out not to be the case. The nurse said everything sounds really good in his lungs, and his stats are really good.

5:00pm: Kevin is breathing a bit clearer after being “bagged” again. They had to adjust the tube in his mouth a bit, and we could hear him trying to cry while they were doing it. It was a very muted, quiet little squeal. So sad! He regularly gets mad and shakes his arms when the nurse does things he doesn’t like, which results in him getting some more morphine or other pain med. We think he’s got the nurse trained and knows how to get the happy drugs 🙂

9:50pm: We went back to the Ronald McDonald house tonight for dinner and changed to a new room – we are now room 204. We had a bigger room when my sister and Emily were here, but now that it’s just Dawn and I, we let the larger room go to a new bigger family that needed it. We ate some hamburgers and chips tonight provided by volunteers. Many nights, different volunteer groups bring in full dinners for free, which has been fantastic. It saves us the cost of eating out every night and makes life a lot easier for us. We are amazed and humbled by the generosity of so many people that make the Ronald McDonald house possible – it has been a very positive experience for us and we are grateful for it. Kevin was sleeping peacefully when we returned to the hospital tonight. There haven’t been any changes since we left earlier except the music, which is now George Winston.

9:15am: Kevin did well overnight and continues to improve little bits at a time. His ventilator was turned down some more, down to 18 breaths/min and 25% oxygen (room air is 21% oxygen). He is over-breathing the vent and it looks promising for getting him off it tomorrow or Friday. His labs look good. They may or may not do an ultrasound today to check for fluid around his belly and around his pacemaker. His tummy is still a bit big but it’s softer today, so that’s an improvement. He is off the morphine today and will just get some Tylenol if he has any discomfort. The nurse said he can get some tylenol now that his bit of jaundice is mostly gone and his liver seems to be working just fine. He is still on some diuretics and peed his bed twice over the night! He is keeping himself plenty warm and seems comfortable this morning. Dawn and I were just discussing this morning how today felt different and we are feeling the physical and mental drain of being here a bit more now, but when we have positive news and things are looking even better it’s not so bad! We are really looking forward to him getting off the vent and hearing him cry and being able to hold him.

10:30am: They just did rounds and everything continues to be very positive. They decided to move him to the room next door because they had a more critical case that needed the room we were in, so they just did the big move! The wheeled him over and put him in room 2 and he slept through the whole thing. We’re now waiting for them to get everything hooked up again because they said we can finally hold him! Even with the vent in, they said we can sit in the rocking chair and hold him for a while. We’ll definitely have an update later with more pictures!

12:15pm: Dawn spent almost an hour holding Kevin. He had to stay on his pillow because of all the tubes, but it was still nice to have him in her lap. It definitely feels like a step forward to us when he can come out of his bed to be held. It’s a small step, but it feels very reassuring to us that things are going well. I have put up a bunch more pictures!

6:00pm: Dawn got to hold Kevin again for a while. They moved his vent down to 10 breaths/min. He’s having no problems breathing over that setting and they still expect to remove the vent either thursday or friday. We’re hoping for thursday! They listened to his tummy and he has bowel sounds so everything is still looking good down there. They are going to approach the feeding very slowly and cautiously, just to make sure his intestines are really ready for food.

10:00pm: Kevin has had a pretty quiet night. Lately we have seen more PVC’s (premature ventricular contractions) show up on the monitor, and it is concerning us. We’re not doctors, so we can’t tell if it’s a problem or not, of course. The doctors are aware of them and monitoring them, and we were told this morning that so far they see no reason to be worried about anything. They could be picked up by the monitor in error, having to do with his pacemaker. They could also be happening, but normal and completely harmless. We are going to be here early in the morning for the cardiac doctor rounds so we can ask more about them. Everything else looks fine, though, and it looks like he is tucked in for a cozy night.

8:20am: We got here just in time for the cardiologist rounds and got to ask the heart surgeon about his PVC’s. He said that they weren’t really concerned about them, and it may be that they just need to do a pacemaker adjustment or something. That was nice to hear, especially directly from the heart surgeon who would certainly know if there was a problem and tell us. We got good news first thing this morning – they plan to take is chest tube out of his side this morning and then take his vent out later today! That will free him up quite a bit and we can finally hear him cry (is that a good thing?). So then when he gets mad and cries, we will actually be able to pick him up. I think that after those things are removed, he will seem a lot more like our little baby. We hope all goes well today and it will go as planned.

10:00am: Things actually went earlier than expected, so his breathing tube and chest tube are out! This happened around 9:00, and he’s still very, very mad. He’s crying hard, but making no noise right now. That’s normal, and he will slowly make more noise when he cries as the day goes on. They’ve given him some pain medication to try to settle him down, but he’s fighting, pushing his blanket off himself, and just did a dirty diaper. He doesn’t realize that getting the tube out was a good thing!

10:45am: After coming off the vent, he wasn’t quite responding as well as they expected him to. The were going to put a tub into his nose to give him some pressure to help breathe, but it doesn’t look like that is going to happen. They said they might have to put the breathing tube back in. 🙁 There are currently 9 people in the room, which always makes us nervous (more people is naturally assumed to mean bigger problem, even though thtat’s not necessarily true!). When they figure out what that want to do, I’ll post again.

11:30am: Well, it’s 3 steps forward and 2 steps back. They needed to put the vent back in, because he just wasn’t ready yet. He was breathing too shallow, so they decided to put the vent back in. This time through the nose, since he was getting a bit of a groove on his palete in his mouth. He’s sedated again from the procedure, so he’s sleeping quietly. They plan to try again in a few days and think he might be more ready then. It’s disappointing and kind of hard to have good news, then have it taken back. The whole process is beginning to take its toll on us, but we’re hanging in there…

1:10pm: The process of removing the vent then putting it back in didn’t sit too well with Kevin. His stats when down, lactates went up, he cooled down a bit, and his heart rate is way up. So they gave him some more morphine and some of other stuff so he wouldn’t move. They want to get everything back stabilized again, so he needs to remain calm and rested. His heart rate continues to be high (up around 190) but the vent is doing his breathing for him which gives his body a chance to relax, so it should come back down and he should relax a bit. For now, he’s out of it. Dawn and I are probably both going to take a nap for a while, as we’re both kind of exhausted.

2:30pm: His heart rate is high, so they are checking different things. First, he has had a little bit of blood when they suctioned his vent tube at various times over the last week. Since his heart rate is high, they wondered if he had some internal bleed which would be forcing his heart to pump faster to make up for it. They checked this out, and they don’t think that’s the case. Since his blood pressure remained high, everything looked fine. So they brought up the cardiology/pacemaker team to take a look at his heart. They did some checks and found that he does have an underlying rhythym (which is good) and they do think that the high atrial heart rate is his natural rate, not the result of some arrhythmia making his heart go crazy. They are going to do an echo soon to see if there is any fluid around the heart, which might be a reason for the higher rate. They don’t suspect this is the case, but they want to check to make sure. The cardiologist really thinks the rate might go down on its own, but they aren’t sure. What started out as a very good day has turned out to be not so good so far, but we’re patient and waiting for things to stabilize.

5:30pm: We are still waiting on the results of his echo, and they are still trying to stabilize his blood work. His heart rate is down a bit, averaging around 175 now. They didn’t think they saw any excess fluid around the heart, but they couldn’t say for sure.

6:30pm: Kevin is still stable and his heart rate continues to slowly go down. We are going to leave for the night and call back later to check on him. We need a night to relax a bit, do some laundry, and get to bed early. Will update again in the morning.

8:30am: Kevin had a quiet night and is still calm and resting. They removed the IV from his hand because it was a little purple and not getting good circulation. He has just a little more fluid build-up, and the goal is to bring that down today. He is going to have a mostly quiet day to give him some rest after the episode yesterday. His heart rate is back down some more, around the 150’s. He looks calm and peaceful this morning.

1:00pm: Rounds were late today, but we got the latest updates a little bit ago. They are continuing to try to keep him stable and said they may try to get the tube out again on sunday or monday if everything goes as planned. They are a little concerned about the blood they are finding when they suction his tube. They have ruled out a couple different potential causes, and suspect that it’s just from irritation and rubbing from taking the tube out and putting a new one in. They’re going to stick a small camera down through the tube sometime today just to see if they can look around for any visible signs of irritation or bleeding. The camera can only see what is below the tube, though, so if the irritation is behind the tube itself, they won’t see it. They’re just trying to make sure there is nothing else wrong which would be causing this. They are continuing to wean the ventilator to make sure he will be ready for extubation next time and that his lungs aren’t still too premature. The nurse is letting him wake up from sedation every few hours and letting him get mad so he will move his muscles some more and give his lungs a workout. Then they give him tylenol or morphine to settle him back down so he can recover. So far, it’s been a very quiet day with very few alarms going off. Kristel is bringing Emily up tonight and they will both stay overnight with us, so it will be great to spend some time with Emily. I might come back to the Quad Cities on saturday to bring Emily back and to take care of anything that needs done. Depending on how Kevin is doing, Dawn may come back with me while Kristel stays in Iowa City to keep an eye on Kevin. We’re assuming that we’ll be here at least through Thanksgiving and the following weekend. It will be hard to be away from family and friends during Thanksgiving, but the Ronald McDonald House holds a nice big dinner that day, so we may get a feast anyway. 🙂

4:45pm: They looked down Kevin’s tube earlier and concluded that there wasn’t any real problem, but they did see some irritation and sore spots. This is most likely the cause of the blood in his tube, so they aren’t really worrying about that much now. He continues to be stable and calm, and they are slowly moving the vent down a little bit at a time. Dawn is holding him right now, and he settled down right away when he got in her arms. I will hold him some day, but for now I opt to let Dawn do all the holding. We’re both looking forward to holding him without all the wires, and without the pillow under him.

10:30am: Kevin had a stable and quiet night. He seems to be doing okay this morning, but he is over-breathing his vent at a higher rate than they would like to have him breathing. They also said his chest x-ray doesn’t look quite as good this morning. We don’t really know what all of this means until we can talk to the doctors later, but we hope it’s just another small bump in the road and not a step back. I probably won’t have access to make an update until later this afternoon, but I will do so then.

6:15pm: Kevin has spent most of the day quiet and sleeping. When he does wake up and get mad, he still over-breathes his vent at rates higher than what they want to see. His chest x-rays today both showed more fluid in the lungs than they would like to see, which they are trying to reduce. They are kind of confused about why the fluid comes off the rest of him, but his lungs seem to be holding on to it. They’re going to give it a little more time and probably do some more echo’s to look closer at his heart. There are supposed to be 4 pulmonary veins going from the lungs to the heart. They can see 2 clearly, but the other 2 are harder to see (this is the case in any child, not just Kevin). Rarely, 1 or 2 of these can actually return back to the wrong place, or hook into a different vein, etc. They really don’t suspect that this is the case with him, but something like that could explain the extra fluid in his lungs. When they do another echo, they will try really hard to verify that all 4 pulmonary veins hook up correctly just to rule out this possibility. Again, they don’t suspect that there is any problem with this, but they want to make sure.
Dawn and I took Emily back to the Quad Cities today so she could go to a friend’s birthday party. We dropped her off and spent a couple of hours at home, which was kind of nice. To connect back to “reality” for a while reminds us that there is life outside of a hospital room! We brought a few more things up with us, since we know we’ll be here all week now. But as much as it was nice to get a little break from the last 2 weeks, we did miss seeing Kevin and being involved in his care, so it’s also nice to be back.

9:15pm: He’s settled in for the night and continues to rest comfortably…

10:30am: He had a quiet night. The x-rays this morning still showed fluid in his lungs, although it looked maybe slightly better than yesterday. Since they still suspect that his pulmonary veins are not the source of the problem, they are going to experiment with his heart rate. They think that he should be having higher heart rates than he does. For example, when he gets mad they would expect his heart rate to go up near 200, and it’s much lower than that. They are giving him some medicine this morning to increase his rate a little bit, and then may try more medicine if it works well. They are doing this first, and if he doesn’t respond correctly to the medicine and his heart rate doesn’t go up a bit, they may actually adjust his pacemaker to force his heart to beat faster. As far as we know, that is the only real change planned for today.

4:30pm: After giving him some Dopamine and Dobutamine his heart rate has been consistently up 20 beats/minute, which is actually what they wanted to see. Otherwise, there hasn’t been much new today. They will take another chest x-ray tomorrow and they hope to see a change in his lungs by then. If they do, then they know that one of the factors that the medicines changed in his heart might explain the lung fluid. If they don’t see any change, then they will keep looking for some other explanation.

7:45am: Dawn and I got here early this morning so we could catch the cardiology rounds to hear what they have to say (they haven’t come around yet). Kevin did well overnight. This morning, he is very awake, with his eyes wide open. He started trying to grab at his vent tube which caused all sorts of alarms to go off, so Dawn is keeping a close eye on him. He seems to be taking an interest in his pacifier now too, sucking away like he just figured out what it’s there for. When he opens his eyes now and looks around, he seems to be much more aware of his surroundings, and seems to look at Dawn when she talks, as opposed to that really glazed-over medicated look he had until recently. We look forward to seeing the results of the x-rays today and hope that they show lung improvement.

10:30am: During rounds, the doctors said that his x-ray didn’t look any better this morning. They did say it could take a couple of days to see an improvement, but we’re not sure that will be the case. They are going to look at a few more possibilities of what could be causing his lung problems, but we don’t have all the details yet. They are going to start feeding him a very small amount of breastmilk through his nose tube today to see how he handles that.

3:45pm: They did another x-ray today, but positioned Kevin on his side. This is meant to make the extra fluid around his lungs kind of “pool” to the bottom so they can see if there is a layer or something that they can see in the x-ray. We haven’t heard anything back from that yet. They did look at his x-rays from birth until now all in a row. The doctor thought that his lungs looked fairly normal after birth, then got worse after his surgery, then started very slowly getting better. Then after his failed extubation, his lungs slowly started getting worse and now she says they look similar to how they looked right after surgery. They still don’t know why, but they are doing tests sooner rather than later to try to figure it out. They did another echo to take a closer look at his heart to check the pulmonary veins. It turns out that the two they can see are one from each lung rather than two from the same lung, so that does still leave open the possibility for a problem there. Also, they were going to look at his aortic stenosis (narrowing or the aorta as it leaves the heart) to see if the original measurement was accurate. We haven’t heard anything back from that yet either. They are going to do an ultrasound of his gut to look for problems like a clot around his kidneys or something, but that would be unrelated to his lungs. They are considering the possibility of another cardiac cath in the next few days if any of these tests are not conclusive. That comes with its own set of risks, so they will only do it if they really think it’s necessary and if they think it could really expose an underlying problem. They did give him a few cc’s of breastmilk today, but we haven’t heard anything about his reaction to that yet either. It’s been quite a long and stressful day today.

5:30pm: There were no real surprises on the echo. They still don’t suspect the pulmonary veins are a problem, and his aortic stenosis gets the same measurement as the original. What they do think is that they may have underestimated the impact of the VSD (the hole between the bottom chambers of his heart). The doctor went into detail about the pressures of the heart and how the lungs initially have a lot of pressure before babies are born (because they aren’t being used) and then the pressure falls dramatically in the first week and then continues to fall for several more weeks (we didn’t understand it all!). This change in pressure in the lungs changes the pressures in the chambers of the heart, which may cause more blood to pass through the VSD than did when he was first born. His slow decline in lung function and fluid buildup corresponds nicely to the expected change in the lungs. So, the plan now is to do the cardiac cath to examine pressures at various points in and around the heart. Ideally, pressure should be the same or very slightly different between the two sides to maintain a balanced system. If they measure greater differences in pressure than expected, that would certainly mean they are on the right track. They aren’t sure if they will inject dye into his heart to look at it that way, as it carries some risk to the kidneys which are already having some troubles. This will probably all be done first things wednesday morning so all the doctors are here, rather than waiting for the thanksgiving holiday. We haven’t heard back about his x-ray results, and they probably will do the ultrasound of his liver and kidneys tomorrow morning rather than today. Kevin seems unaware of all this going on, except he gets angry sometimes when they are doing these checks. He arches his back and fights more now. We hate to see him upset, but we’re glad that he has some fight in him!

9:00pm: Nothing eventful has happened since earlier. They are continuing to feed him very small amounts of breastmilk every 4 hours and he seems to be handling it okay. Since he’s asleep and calm, we’re leaving for the night to get some things done and to get another night of good rest.

10:00am: Kevin was stable overnight. His feedings continue to go just fine, and he had a dirty diaper this morning. They are going to continue the feedings until 2am tonight, since he will probably be first case for his cath tomorrow morning (around 7am). They have lowered his vent settings to 21% oxygen (same as room air) and a rate of 35 breaths/minute, since his current settings are still resulting in his oxygen sats being in the 90’s. They want it to be low so his lungs have to do more work and the heart isn’t pumping so much to his lungs. They haven’t looked at his x-rays yet this morning, but they are wondering if his sats are high because his lungs have cleared up a bit and his x-ray will look better. They aren’t really going to make many other changes today, since tomorrow will be their big chance to see the pressures around the heart from the cath and they can make more informed decisions at that point.

1:30pm: The x-ray from this morning did look a bit better than yesterday, so that is a good thing. It might mean that they are on the right track, but it’s just too early to tell for sure. They will put an IV in today to give him some more blood, and then put in another line in preparation for the cath tomorrow morning. He got the ultrasound of his liver and kidneys, but we haven’t heard the results of that yet. He tolerated it well at first, then got mad at the end so they had to give him some more happy drugs to help him relax. He seems relaxed and content for now.

5:00pm: We talked to the doctors who will be doing his cath tomorrow to sign the consent forms and all that. It is definitely a serious procedure, and the risks involved are greater than when he had one right after he was born. They are going to be looking around a lot more than they did then, which always carries increased risk of hitting something they shouldn’t or clotting, etc. When they do this tomorrow, they will be looking at pressures at a lot of different points in his heart and kind of making a map of everything. They will be taking pictures and checking his original coarctation repair also. If there is any narrowing in the aorta that wasn’t there before, there is a chance that they might balloon it out a bit to widen it. They will make those decisions tomorrow when they are actually in there looking around. After this is all done and they have had a chance to analyze the numbers and everything, they will either be able to say that there is a problem in the heart that could be causing his other problems, or that the heart itself is working adequately and there must be a different cause. The doctors do not expect to find anything new or vastly different structurally, meaning they won’t suddenly find that he has a missing vein or something. If they do find problems, it will most likely be from a narrowing of the aorta or an underestimated backflow of blood through the VSD. They have him scheduled for first thing in the morning, so we will be here really early to spend some time with him before he goes into the cath lab.

7:00am: Last night, they changed Kevin’s vent setting (from PRVC to SIMV) and he tolerated it for a while, but eventually they switched him back. I’m not sure why they wanted to mess with the vent the night before his cath, but they fiddled with it for a few hours before deciding to switch him back. We got up early and got to the hospital at 6am this morning to be here as they prepared Kevin to go down to the cath lab and to hear the final plans from the doctors. He is scheduled to be wheeled down to the cath lab any time now. Hopefully we should hear how it went and be able to post an update by 11:00.

12:30pm: This is the first post I (Dawn) have written, and it is one I never wanted to write. We spoke to the Dr.’s and Kevin’s heart is failing. The only options we have right now are to put him on the heart transplant list and/or a risky complex surgery called the Norwood. Matt and I are in total shock and are trying to make decisions that need to be made quickly. Odds of surviving the surgery are low, but it is the best chance that he has. If he can make it thru the Norwood there are two more surgeries that he would be required to have over the next few years. I am really at a loss of words right now, I know you all have a been praying for Kevin and looking forward to seeing him come home. My goal right now is to be Kevin’s mom the best I can. I can’t hold him or feed him, but I talk to him and give him little kisses and let him know that I am here. Only time will tell how long we will have Kevin with us, but we are going to be grateful for every second of it. We truly appreciate all of your prayers and everything that has been sent to us, we could not get thru this without friends and family.

7:45pm: It has been a long and emotional day. We learned more about the Norwood procedure and the ECMO process used during the operation to replace most of the function of his heart. They did some experimenting with his pacemaker today to adjust his rate lower so his heart isn’t so over-worked. They are also going to reduce his dopamine a little bit to bring his natural rate lower. They are also considering putting him on ECMO before the actual Norwood operation. This would give his heart a chance to rest and possibly slightly recover, and also help his other organs get into better shape. They would monitor him while on the ECMO to see if he is improving and if his heart function increases. There would be a very small chance that his heart can recover enough on its own thru the help of the ECMO that the Norwood operation wouldn’t be necessary. This is unlikely, but is something they are willing to try and see. They will review his charts and numbers tomorrow to see if things are getting any worse. If they are, they may decide to put him on ECMO tomorrow. It is a fairly short 1-2 hour procedure and he shouldn’t feel anything. It’s not open-heart or even open-chest. Instead, they would put two lines in around his neck. If things do look better tomorrow, they may continue to watch the changes that a lower heart rate has on everything and delay the ECMO and possible Norwood procedure for a few more days. Things are still very critical and there are many risks to all of this. The doctors said that in their 100 years of combined experience, they hadn’t seen a case exactly like Kevin before, with his unique combination of heart problems. So this is all a little bit new, although the Norwood procedure and the ECMO are things that they have experience with. There is still hope, and there is a chance that Kevin will come through this okay. The odds are against us, but we still hope for the best without ignoring the reality of the situation.

10:15am: Happy Thanksgiving! Despite the difficulties we are going through right now, we have so much to be thankful for. Dawn and I have each other and a wonderful life together. We have a beautiful daughter who means the world to us. We have families who are supportive and there for us on any day, at any time, for any reason. We have friends who care about us enough to follow Kevin’s progress and keep us in their thoughts. And we have a small baby boy who is struggling to stay with us, whom we already love very much. We’ve been able to spend time with him, hold him, talk to him, feel his grip, and look into his eyes. And we still have hope that he will come home with us and grow to be a strong young man. Despite not knowing what the future holds for us, we will never forget the things we have to be thankful for right now.

Kevin is still doing about the same. He had some paralytic overnight because he just couldn’t settle down a few times and they needed him to be still. His numbers actually look a little bit improved today. They are going to continue to keep him paralyzed and sedated so they can get him to rest. They want to watch the numbers closely and see where his body naturally settles in. Maybe the numbers they think they need to achieve aren’t right for him. They’re going to continue watching him today and not intervening too much to see what he does and if he can start to fix himself. They don’t want to take drastic action until it’s absolutely necessary. The idea of a heart transplant is something being discussed, but they aren’t sure that’s the best option either. The doctors are a little confused, because according to the measurements of the ventricles they are not performing how they should, but they don’t see any reason why that should be the case. So their optimistic view is that maybe with a little time, a lot of rest, and some very gentle care, he might be able to bring himself back up to the point where the ventricles are operating correctly on their own. That is the very optimistic hope, but if it does happen, it might avoid the need for operations altogether. We remain very cautiously optimistic that the best could still happen, but we realize that the odds are that we are still in for a rough road ahead, whether it be a heart transplant or the Norwood procedure or some other treatment. Our toughest days are ahead of us in the coming week.

9:15pm: A few of Kevin’s numbers improved very slightly today, and his x-rays looked very slightly better. The doctors are going to continue on this path of letting him try to recover more himself. Although some things are improving, it is very slight and very slow, so we are trying not to get our hopes up. The reality of the situation is that he is still very sick and has a long way to go. They will check him again tomorrow to see if there is more improvement. If there isn’t or if he is any worse, we will need to start making decisions about ECMO or a transplant. There are some problems contacting insurance about the possibility for a transplant. Our insurance would want him to be transferred to Chicago or St. Louis for a transplant, and in his state that would be a dangerous move. It would also be very difficult for Dawn and I. The hospital here is fighting to get ahold of the insurance and work something out before it becomes a pressing issue. Right now, a transplant isn’t necessarily the plan, but they want to have their options open. We will probably know a lot more tomorrow, and it may be a day that we are required to make some difficult decisions. We’ll wait and see what comes. Tonight Kevin is still on the paralytic and his body is getting a lot of very good rest. Dawn read him some books tonight. Although he can’t move right now, he can still hear, and we know that he’s aware that his mommy is there.

9:20am: No real news yet this morning. The cardiology team did rounds and basically said things look similar to last night, no big improvements or anything, although his x-ray from yesterday does look better than it did earlier in the week. They are going to come back to us in a little bit and discuss further.

11:15am: After further discussions, the doctors don’t think that the norwood procedure is a viable option for Kevin because of his limited ventricular functionality. They have gone back and forth and talked to us a few different times with different ideas. Dr. Burkhart (heart surgeon) talked to his colleagues in Toronto which handles more heart cases than anyone else in North America to see if there were any other ideas. Together they concluded that his ASD (the hole in the top part of his heart, which we didn’t even know he had) may be playing a bigger role in this than they previously thought. So the current plan is to take Kevin into surgery tomorrow to repair both holes. They want to be proactive, rather than wait for him to be on ECMO with both holes and hope for the best. At least this way if the holes were a major contributing factor, or the holes are bigger than they thought, they would rule out the possibility that they were the reason why he wasn’t doing well on ECMO. The surgery is open chest and open heart, and he will most likely come back from the operation on ECMO and with his chest still open (because the heart swells after operations). The two options at that point are for him to give his heart a rest and repair himself so that his ventricular muscles work correctly, or wait for a heart transplant. The hope is that having the holes fixed in his heart gives him a better chance of repairing himself. This also means that he can no longer be transported to other hospitals. Our insurance only wants to cover transplants in Chicago or St Louis, and if they refuse to make an exception for Kevin – since he can’t be transported – then a transplant no longer becomes an option. If they will make an exception, then a transplant becomes a possibility here in Iowa City, but it is still not a promising option. They would give Kevin about 5-7 days to show improvements on his own after ECMO to avoid a transplant, but the realistic chances of that are small. At that point they would give him about 3-5 more days to wait for a heart to do a transplant, and only if his other organs are recovered very well. The average wait time for a heart for him is 3 months. Given his low odds of surviving a transplant operation and the shorter life expectancy of transplant recipients, it’s an option we may decide to not even pursue. There is a fine balance between extending life and prolonging death, and we do not want to make Kevin suffer through many operations and a difficult short life just to prolong the pain of letting him go. When it comes to the point where we need to make those decisions, we will definitely consider all the information we have. Once on ECMO, we will no longer be able to hold Kevin, so we are going to take advantage of the time we have with him right now and hold him as much as we can today.

7:30pm: Dawn and I both got to hold Kevin for a while today. He is still pretty jaundice because his liver isn’t working at its best. Otherwise, his numbers have been pretty stable all day and they are just continuing to keep him calm and stable until surgery in the morning. He will be first case in the morning, starting at around 7:00. The surgery will probably last 5-6 hours before he comes back to the room. We will get some good rest tonight so we can be here bright and early with him before he goes into surgery tomorrow.

8:00am: Kevin is off to surgery. He will probably be back around 3pm or so and we’ll post more when we hear any news.

10:22pm: After much prep time, surgery has just started.

1:25pm: Still no news. It’s like being at the top of the biggest hill of the worst roller-coaster, when your stomach goes into a knot as you wait for what’s next. Except the top of the hill lasts for 6-8 hours.

3:45pm: Good news – Kevin did very well in the surgery, and did not need to go on ECMO at all. They took him off bypass altogether after the operation and he remained stable for 3 hours, so they decided that ECMO was not necessary – at least for now. This was actually the “best case” that we were hoping for but not counting on! The doctor said they could have sewn up his chest, but decided to leave it open for now in case they needed to use ECMO later or in case there were other complications. He is still very sick and we are not out of the woods yet. It looks like this operation made a big difference and probably was what he needed, but there are still no guarantees. He is back in a new room now, but the surgeons are still in there working on him, hooking everything up, and making sure everything is stable. They may be in there for another hour or two while we wait in his old room and watch from the outside. We haven’t been told anything bad yet, but we remain very cautiously optimistic that things will continue to go well. Given the last 3 weeks, we know that even a good result does not yet mean everything is okay. It’s definitely good news that he got through the surgery and is not on ECMO, but we want to make sure everyone understands that he is nowhere close to ‘better’ yet. It’s still a very tough road ahead. We will update later with further news on how he is doing.

6:45pm: Kevin continues to recover well. He was waking up slightly, but they quickly sedated him more so he doesn’t move for a while. His numbers are all falling into line as expected. His lactates were higher, but they are now starting to decline. Over all, he seems to be recovering as well as or better than expected. The doctors said that after bypass, they expect to see a low point 10-12 hours later, so they expect to see him get a little bit worse before he gets better. The nurses and doctors are still very active in his room doing lots of things to get him settled. We will probably stay until later to be with him and make sure there are no surprises. Our big fear now is to be happy that things go well and then shocked again if things take a turn for the worse. We’ll continue to stay positive and hope that this really is the path to recovery.

9:00am: Kevin did very well overnight, without much of a dip at all. He’s still on quite a bit of medications and his chest is still open, but the surgeon said they will probably try to close him up tomorrow. Today they are going to try to get him to start peeing and slowly come down on a few of his meds, but otherwise they will keep him stable. His kidneys are already working better, and much of his jaundice color is now gone after being on bypass. Overall, he is doing very well and everyone here is staying positive about his outlook. The doctor said he will probably come away with an addiction to the pain killers, but they have treatment for that and it’s not uncommon. It’s such an amazing and welcome change from just a few days ago, and we’re very thankful that he seems to be on the right road to recovery.

3:00pm: Things continue to slowly improve today, but nothing of note to write about. He’s very quiet and not setting off any alarms. Everything seems to be continuing to go as planned.

9:00pm: It’s been a slow and calm day with steady, slight improvements. He has been waking up more tonight and opening his eyes pretty wide, so Dawn is reading some more books to him. They also took his footprints, since that wasn’t done right after birth. He is scheduled to have his chest sewn back up tomorrow around 9am. We have switched rooms again at the Ronald McDonald House, back to room 119 where we were before. We will head back there a bit earlier tonight since everything seems quiet tonight. We want to get here in the morning before they begin closing him up.

8:00am: Kevin is 3 weeks old today! He did well overnight. He’s a little bit puffier this morning, but that is expected and it’s not nearly as bad as it was before. Closing is still scheduled for around 9:00. They have changed the display mode on his ECG monitor and it now shows which beats of his heart are being triggered by the pacemaker. It’s still working as before – his body triggers the top chambers to beat, and that triggers the pacemaker to cause the bottom chambers to beat. He seems to be doing a little bit more on his own, though, meaning many of the signals from the top of the heart actually are triggering the bottom on his own, without the need for the pacemaker to fire. This is always preferrable, to have his own body doing the work as much as possible. It also saves on battery life in the pacemaker so he hopefully won’t need that replaced as early! They will be beginning to setup for closing his chest soon, and we will post an update after everything is complete and we are allowed back into the room.

11:00am: Everything went well and Kevin is all sewn up. The doctor said he tolerated it very well and he was actually impressed with his ventricular pumping now just from looking at it.

3:00pm: Kevin is starting to wake up a bit more from his paralytics and open his eyes. He should start moving his hands sometime soon, and then his arms some hours later. They are going to try to start feeding him again today and work on keeping his numbers looking good. Everything remains positive. He is peeing very well, getting some of the extra fluid off him. They need to get a bunch of it off before they will even think of taking out his breathing tube, but he’s still not nearly as puffy as he was before. We will take some more pictures today and post them soon!

6:15pm: We took a bit longer to post pictures because we wanted to get Kevin all cleaned up first. He still had some dried blood and other gunk from being closed up today, so Dawn and the nurse gave him a bath and picked out new bedding for him. We picked Pokemon because we thought Emily would like it. They switched his breathing mode from PRVC to SIMV again. Last time they tried this a couple weeks ago he wouldn’t tolerate it and starting breathing really fast. Now, though, he seems to be doing pretty well with it. We’ll wait and see if he stays on this mode or switches back again. The other big news is that he got a mobile! It’s hanging above his head now with spinning birds that flap their wings and play music for him. He seems to look at it and follow the birds a bit, but it’s hard to tell what he’s really looking at sometimes. They haven’t started feeding him yet because the new tube down his nose doesn’t look right in the x-ray and needs to be re-inserted. Then they’ll start giving him breastmilk again.

8:45am: Kevin had kind of a hard time settling down overnight so they pumped up his morphine some more. He is probably getting quite a resistance to the pain killers, since they are needing to up the levels to keep him calm sometimes. They turned off his Epinephrine drip overnight and today they are planning to remove two of the tubes from his chest. Everyone continues to be impressed by how well he is recovering and dealing with everything. They took an x-ray this morning to check the position of his feeding tube to see if it settled into place correctly, and if so they will probably begin feeding today. When he wakes up, he’s the most alert we’ve ever seen him. He definitely looks around, stares at Dawn, follows the birds on his mobile, and gives quite a scowl when he’s not happy. If you’ve seen Emily’s “sad face” you can imagine his 🙂 He has tolerated the SIMV mode on the vent all night and continues to be on it, which is a good sign and quite a change from the last time he went on it. His swelling is down a bit more today – he’s lost a little more weight and he’s now just over 8 pounds.

3:30pm: It’s been a quiet day of continued slow progress. A music therapist who visits kids in the hospital came to Kevin’s room and played him some music on the guitar which he seemed to like. She’s going to bring us a CD recorder so we can record us reading some books that they can play at night. We had it once before but didn’t get around to recording anything when it wasn’t going so well.

9:30pm: Kevin is resting peacefully with the help of a new sedative, so Dawn and I are heading back to the Ronald McDonald house to get a little bit more sleep than usual tonight. He did well all day and settled down nicely tonight after Emily and Kristel came to visit. Emily really liked seeing him again and enjoyed his mobile and Pokemon blanket. She didn’t seem bothered at all by the tape on his chest where his incision was, and was very matter-of-fact about him having a hole cut there for surgery. She is always very concerned about him and checks with us to make sure he is getting better. She likes to sit right next to his bed and just look at him and talk to him, so I think she’s going to be a great helper when he comes home! Tomorrow will hopefully be another step forward day as they continue to slowly go down on his medications and his ventilator.

8:45am: Overnight Kevin was calm and quiet with a little less pain meds. One more medicine has now been stopped, so they are still slowly being removed. They went down on his vent a little more to continue preparing him for extubation, and he might have his chest tube removed today.

10:30am: The chest tube is out and he handled it well. They are continuing to feed him breast milk and will lower his morphine a bit more tonight. Tomorrow morning the doctors are going to lower his vent more, make sure that he handles it well, and then probably extubate tomorrow. If he handles it well and breathes sufficiently on his own, that will be a great step forward and the pictures will look much better 🙂 Another echo is planned for today, just to take another look at his heart and make sure that everything looks as is expected after saturday’s surgery.

9:15pm: I haven’t posted much today because it’s been a very slow and calm day. He went off a few of his meds, so his IV pole has a lot less stuff on it now. He’s been continuing to get breastmilk at a slow rate and handling it just fine. Tomorrow will be a bigger day, with the planned extubation. It makes us a little nervous, since the last time was kind of traumatic for him (and us!) but this time he is in much better shape and his lungs are much clearer. He is breathing quite a bit on his own already, with the vent turned down a lot from where it was a couple of days ago. Everything should go smoothly, and we should be able to get much cuter pictures without that big tube in his mouth and tape on his lip! He will still get some oxygen through his nose. We didn’t hear anything back about his echo today, so maybe we will hear something about that during the rounds with the cardiology team tomorrow. Dawn and I plan to go back to the Ronald McDonald House tonight and record a CD of music and us reading books to him so they can play that during the nights. So we are heading out shortly, and hopefully Kevin will get a good night’s rest for another big day tomorrow.

8:15am: Everything looks really good and extubation is still planned for this morning sometime. He’s now getting very little help from the respirator, but his numbers still look good, so it looks much better than it did last time. He did well overnight with a little less pain medication. He pooped overnight, which means the breastmilk is going through his system okay. Otherwise he had a very calm and quiet night and rested nicely for the nurse.

9:30am: Based on this morning’s x-ray, they didn’t think Kevin was quite ready to be extubated. They are going to hyper-inflate him and they upped his breathing rate a little bit to try to clear his lungs a little bit more. They will do another x-ray around noon and if things look more like they expected for today at that point, they will still extubate today. It’s not a step backwards, it’s just making sure he’s all the way to the point where they want him to be before they do it.

1:30pm: Kevin was moved on to his tummy for a few hours to help his lungs clear up some more and they adjusted his vent a little. They’re going to take another x-ray around 3:30 (instead of noon) to make sure that things look okay, and they will probably extubate shortly after that assuming everything looks good. The doctor looked at his echo from yesterday and said it looks like his ventricals still aren’t pumping as well as they should. However, his overall progress and numbers show that he is doing pretty well, so it must be adequate for him. It may take some weeks or longer for his ventricals to build up some strength and pump stronger. It’s also possible that the echo didn’t get a good measurement, because sometimes they are imperfect and hard to interpret. Since Kevin was so critically sick last week, it might take a little extra time for some of these things to recover. Kevin continues to get increased amounts of breastmilk which will help him get nutrition without the need for so much fluids through his IVs. We got a few inches of snow overnight here in Iowa City, and I made sure to tell Kevin that he’s going to be doing all the shoveling in a few years 🙂

5:15pm: After lowering his vent so that it did almost nothing to help him and waiting an hour to see how he reacted, the doctors decided Kevin was ready to be extubated. Everything went smoothly and he was all done in 15 minutes! They also removed the tube from his nose that went down to his stomach, so his face is much easier to see now. He still has his feeding tube in his nose and a he now has a little tube in his nose for oxygen. He was pretty mad for a little bit after they pulled everything out, so he screamed silently for a while, with a few little whimpers and coughs thrown in. It will take him a little while to get his voice back. He’s now settled down quite a bit and is wide awake and staring at us. All his numbers continue to look good and his sats are good, so he’s handling it very well!

7:45am: Today is Kevin’s actual due date! We didn’t post an update last night because we fell asleep here early and stayed in the room all night. He stayed on his belly all night to keep clearing his lungs up and he’s doing very well. They took the ventilator out of the room in the night, so it’s a little quieter and there is a little more room. We always like to see machines leave the room! They took one of the lines out of his groin that wasn’t being used anymore. His feeds are maxed out to 14ml/hr and they are adding some formula in there to get him more calories so he starts growing some more. The heart surgeon worded things a little different about the echo 2 days ago, saying his heart function was improved from what it was before surgery, but still not where they want it to be, and that it might just take some time. We are going to go back to the RMH to shower and then come back to the hospital in a couple of hours.

10:20am: His x-ray looked a little bit better, but since he had so much extra flow to his lungs for so long, they don’t expect it to look ‘normal’ again for possibly a couple of weeks. His catheter was removed this morning and he is pooping quite a bit more now with breastmilk going through him. They plan to remove his neck lines tomorrow since they will have been in for 7 days and they won’t need them anymore. His morphine was turned off completely so now he’s not on any pain meds except for an occasional Tylenol. He still seems to be comfortable. The wires on his stomach are hooked up for the portable pacemaker that they put in during his operation. He doesn’t really need it (since he already has one!) but they leave it there just in case. So he looks a little more ‘wired up’ than he really is. Dawn may get to try to breastfeed today, and she will probably get to hold him again shortly.

11:45am: Dawn’s been holding him for over an hour and he’s very calm and content. It’s a lot nicer now to be able to hold him without a pillow underneath. It’s still hard to cuddle with all the wires, but they will be gone before we know it! We’re going to get him back in bed now so we can grab a bite to eat.

3:00pm: The Ear Nose & Throat doctors took a look at Kevin today by sticking a small camera down his throat. They inspected his vocal chords and found that the left one is not operating all the way. This is not uncommon for babies that have had heart surgery, since the nerve that works the left vocal chord actually runs from the brain down under the heart and then back up to the neck. This is why he isn’t making much more than a whisper of air when he cries, because the vocal chords aren’t meeting all the way in order to make sound. It may fully recover on its own in the coming weeks, or the right vocal chord may learn to compensate, or they may have to look at it again later. They don’t go in and do surgery or anything at this point. What this means is that they need to hold off on feeding thru the mouth for now. If he can’t close off his vocal chords all the way, food can get down into his lungs when he eats. They will do a test probably on Monday with an edible dye to check this. They let him swallow this liquid while they look via x-ray to see if any comes down into hus lungs. So for now he’s still going to be eating through a tube in his nose.

10:15pm: Dawn held Kevin again tonight for about an hour. He is staying calm most of the time, but he does get angry when his diaper is full or when he has to be repositioned too much. When he’s really upset it’s hard to even notice sometimes because his cry doesn’t make any noise! We might stay here again overnight just because he doesn’t seem to be getting much dedicated attention tonight and we worry about him being upset or having problems and no one noticing because he doesn’t make any noise. It feels like the nights and weekends get a little emptier around here, and it’s hard to leave and wonder if anyone is devoting enough time focusing just on Kevin. Emily will be coming up tomorrow to visit for the weekend, which will be nice. She is always excited to see Kevin again. She asked tonight why she hasn’t gotten to hold him yet, since she saw the pictures of Dawn holding him. I tried to explain how delicate he is with all his wires and tubes and how she will eventually get her turn, but she didn’t seem too convinced!

8:45am: It sounds like the plan for today is to get some more of his lines out so he won’t be quite so wired anymore and taper off most of his medicine. The heart surgeon said this morning that they saw his vocal chord nerve during surgery, which is a good thing. He knows he didn’t cut it, but it means that he expected it to have some swelling which would cause it to not work correctly. He doesn’t see any reason why it wouldn’t recover, but it may take a month or two. In the mean time, he said babies compensate very well.

3:05pm: (An update from Emily) Kevin is doing better. He has a cute little mobile. And he likes the birds that go in circles. We saw a little blood on his chest by where his stitches are but the doctors are going to look at it. He’s wide awake. I went to an activity today. I made a doll. She doesn’t have a name, though, because I haven’t figured one out. I made her with fabric markers and I gave her an IV pipe and a mask over her mouth and stickers on her shirt and band-aids and two casts. I wrapped her leg with tape solid for a cast. I also made some picture frames at another craft time for brothers and sisters of kids in the hospital. One for mom and one for dad. Kevin is so cute.

3:30pm: Kevin’s been wide awake and alert today. His x-ray looks a little more cloudy than yesterday, so they are keeping on some medications and giving it more time. It’s hard not to be freaked out by the slightest little setback, since last time they kept saying “give it some more time” and things just kept getting worse. We don’t ever want to go back to where we were then, so we always remain cautiously optimistic. We know that this time is different, and he has already made huge progress since his surgery just one week ago. He had some gagging this morning and threw up a little bile from his stomach, so they put another tube in his nose to suction some of that out of his stomach for now. They also eased off on the plans to get him off meds today to give his lungs some more time to look better.

12:00pm: Last night I took Emily to the Hawkeyes basketball game and then went back to the Ronald McDonald House to sleep, so I didn’t write any updates! Dawn and Kristel stayed at the hospital overnight. Kevin slept while Dawn held him most of the night, then he slept some with grandma too. His x-ray of his lungs looked a little bit better this morning, and they removed the tube that was suctioning out his stomach. Since all his pain killers were taken away, they wondered if his throwing up and other stuff were withdrawal symptoms. So they started him up on a little bit more pain killer and he seems to be a little happier. They will want to do another echo in a couple of days to check the function of his heart again to make sure it is working as they expect. Otherwise, not much else is happening today. Once the new week starts tomorrow they might have more plans for him.

11:20pm: Dawn held Kevin for a few hours tonight and is now helping to give him a bath. He’s been good all day. Tomorrow he will be 4 weeks old, and he’s acting like it! He’s moving around a lot more and showing more emotion when he’s upset. He turns his head and eyes to find Dawn’s voice and is really comfortable being held. It’s a bit strange and a little sad that he’ll be 4 weeks old and has never been at our house or even outside. But we know that will come soon enough, and we look forward to those days. He’s making just a little more noise now when he cries, but it still sounds mostly like heavy breathing. It’s certainly no loud baby cry! He is now off the Milrinone and on Captopril instead, which helps with his heart function. The benefit of this is that Captopril can be taken orally, which is a step forward for getting him off his IV’s and able to move out of the Intensive Care Unit. So far he has tolerated the change well, which is what they look for. Tomorrow we will hopefully have the swallowing test done to see if he is ready to feed by mouth or not, because of his vocal chord that is not working all the way.

11:00am: Four weeks! It’s hard to believe that we’ve been here 4 weeks with Kevin. Is normal life still out there? 🙂 We’ve appreciated everyone visiting this site and checking on Kevin’s progress daily and also all the emails we’ve received. We don’t always respond, but I promise we read them all and love it when new ones come in and break up the monotony a bit!
Kevin did well again overnight, spending a couple of hours sleeping on Dawn. He got his external temporary pacemaker wires out this morning, so there are a few less things attached to him now. It was simple and quick and he didn’t mind it much. They are going to do another echo today to check on his ventricular pumping ability, make sure there are no other issues, and make sure that there is no blood around the heart which can sometimes happen after pulling out those wires. The swallowing study is scheduled for 2:00, so they will stop his feeds at noon so he’s good and hungry by then and will want to swallow for them. He is really starting to like his pacifier more and goes to town on it like Emily used to. They removed the tape over his chest incision yesterday and put some gauze over it for now. We’re still waiting on morning rounds to hear the summary of the weekend and the upcoming plans.

3:40pm: Kevin had his echo at about 2:00, which we haven’t heard anything from yet (and may not until tomorrow). After that he had his swallow study. We wheeled his bed down the hall and on one of the huge staff elevators to the 3rd floor. They put him in a little carseat-like chair in the middle of a big x-ray machine while we watched through a window. There were four different thicknesses of fluid that they gave him and they watched how he swallowed through the live x-ray. He didn’t do so well with the thinnest liquid, taking some of it into his lungs. Because of his injured vocal chord, he can’t build up enough pressure to cough strongly, so if fluid gets down the wrong pipe he wouldn’t be able to cough it up well enough. He did cough a bit when it got into his lungs which was actually a good thing. When they got to the thicker liquids he was kind of tired of it but did do a bit better. Eventually he just started spitting it out, so it was all over his lips and tummy by the time they were done. They decided that they will try to feed him a little bit of thickened formula 2-3 times a day for now. He may not actually eat any, but they want him to develop his sucking ability and swallowing ability. They will probably take another look down his throat in the near future, and if his vocal chord is recovering then they may repeat the swallow study.
I took a video of the x-ray during the swallow study using my digital camera. It’s almost 6MB and I don’t know if it will play on all computers, but if you want to try it, here it is: xray.mpg.

6:00pm: The doctors finally came around to do rounds at about 5:00. They were delayed with a couple of emergencies today. Everything continues to look good. All his numbers are either stable or improving. They said the echo showed improved cardiac function and there was no mention of any blood around the heart. He had another IV line put into his hand just a few minutes ago, so now they can take out his neck tubes tonight. He should be a lot more comfortable and easier to hold without those in his neck! They are leaving the IV line in because there are a few more meds they need to give him over the next few days, otherwise he wouldn’t need it. The doctors compared his lung x-ray and said they did see an improvement from yesterday. Again they said that the more important thing is his overall progress — being off the ventilator, needing less medication, being alert — and that it is very typical for the lung x-rays to lag behind the overall improvements.

10:35pm: Kevin had his first attempt at feeding from a bottle tonight. He didn’t get much, but he did try to suck. We might have had the consistency too thick and the nipple not the correct hole size, so we are going to talk to the guy tomorrow to make sure we are doing it right. His neck lines came out without any problems tonight and Dawn has been holding him on her lap for several hours.

9:40am: Kevin had a very quiet night and slept well. This morning some of his numbers look a little better, but the doctors haven’t done rounds yet. His white blood cell count is up a bit, but he doesn’t have a fever or anything so they don’t think he has an infection. They’re giving him antibiotics just in case. Now that he’s more awake and less hooked up to stuff, we’ve been staying in the room every night. It’s not a very comfortable night’s sleep, but it’s nice to be with him. We still go back to the Ronald McDonald house to shower and to eat some meals, but we’re looking into getting a room at the “guest house” here in the hospital itself. That way we don’t even need to drive out in the cold and if Dawn is here by herself it makes her life easier. Right now there are no openings but we’ll see if a room becomes available.

1:15pm: During rounds they said things continue to look better. His x-ray wasn’t changed much from yesterday. His bilirubins continue to fall which is a good thing. He got to have his first adventure with a bouncy seat, too. They put one in his bed and set him in it. I’m not sure he knew what to think of it – he looked around like he thought it was some new test they were going to do on him. Since the video from yesterday worked for most people, I thought I’d post another one of him in his bouncy seat. The music therapists came around again and same him some songs which he also seemed to enjoy. The nurse pulled his feeding tube back so now the breastmilk/formula mix will go into his tummy so he can learn to adjust to that. Then they’ll stop the continuous feeds and instead get into a more natural feeding schedule where they give him food then wait a couple hours before he gets anything else. He’s once again being held by his mommy now, which always settles him down.

3:45pm: After moving his feeding tube back to his stomach, it seems like that made Kevin’s stomach pretty upset. He started vomiting and was very uncomfortable for a while. They had to suction him a few times because he couldn’t get his airway cleared all the way by himself, but now he seems to be cleared up and breathing better again. His vocal chord problem means he still can’t build up enough pressure to really cough out the last bits, so the suction is required. It made us pretty nervous when this happened, but at least he could vomit and clear his airway enough that he could breathe, even if he needed some help clearing it all out. Dawn and I have checked into the Helen K. Rossi house here at the hospital today. We will check out of the Ronald McDonald house tonight and move in here so we can more easily spend all of our time with Kevin.

10:30pm: It took a while to pack up our stuff at the RMH, clean the room, check out, and transfer everything over to the Helen K. Rossi house in the hospital. Hopefully this will now make our stay a little bit easier. Kevin’s been about the same the rest of the day and tonight. He still seems like he doesn’t feel very well. We’re not sure if it’s from withdrawal off morphine or the change in his feedings or if he is fighting off some kind of sickness. We’ll ask the doctors more tomorrow and see what they think. It seemed like we were making such good progress, and today kind of felt like a small setback. Hopefully they’ll figure out what the issues are and have a plan for tomorrow which will continue to move him forward.

9:30am: Another mostly quiet night for Kevin. He slept well and was happy most of the night. This morning his lab numbers are improved a little more, with his bilirubin dropping some more, lactates in line, blood gases okay, etc. He still sounds crackly when he breathes because he’s having a hard time clearing the gunk out of his throat. They are needing to go in and suction him every so often which he absolutely hates. It clears him up, though, and he breathes better. His white blood cell count was a bit lower this morning. He hasn’t started with the bottle feeding yet since he’s had some of these issues with throwing up, but they might try to start that again today. They still want to put some weight on him. We’ll wait for rounds to hear what the plans are for today.

11:30am: During rounds I looked at Kevin’s x-ray and it looks better again. Slow progress. They are going to move to feeding via the tube for 2 hours, then no food for an hour. At the end of the no-food hours, we will try the bottle again to see how he does.

3:40pm: Good news! On his one month birthday, Kevin is moving out of the Intensive Care Unit! He will be moving down to the general pediatric floor in the next hour or two, since they think he’s doing well enough that he doesn’t need to be up here anymore. It’s a big move and a very positive thing, but also pretty scary for us. He won’t have a dedicated nurse 24/7 anymore, and we’ll have to start being a little more independent. We need to pack up our stuff and move off this floor that we’ve called home for the last 4 weeks. We’ll post an update and some more pictures once he moves down to his new room and we’re settled in!

7:45pm: Well the move to Kevin’s new room went well. We wheeled him down here with nurse Bob and found his new room (room 65). The Pediatric unit down here is very new and nice – they just opened in August. Our room is much smaller than our PICU room, but it has its own bathroom and shower, flatscreen TV, and VHS/DVD/Playstation cart. It’s kind of a strange experience to be moved from the PICU where were had constant attention to this floor where the nurses are shared and we are kind of more on our own. We’re going to watch everything closely to make sure there are no miscommunications and that he continues to get everything that he got upstairs. We stayed pretty in tune with what medicines he was getting and how often in the PICU (especially Dawn) so hopefully we’ll know if he’s missing anything. His feeding tube came out in transit, so they ended up putting a new tube down into his tummy for food. It’s been an hour and a half since his food was disconnected and they haven’t hooked it back up yet, so we’re going to track them down and see what’s up. The monitors here are a little different than upstairs – they don’t track the top and bottom of his heart beat separately, so we won’t see alerts that were actually misreads caused by his pacemaker that dinged all the time upstairs. He brought his favorite bird mobile down from PICU and they let us keep it here for a while, so he’s currently settling down while watching that. He had his first real bottle feeding today and it went well. He only drank about 10 cc’s, but it was a good start. He didn’t seem to gag on it or choke, so it seemed to make it down the right pipe. Another big milestone happened today – he smiled! Despite all he’s been through, he started giving some grins today. Dawn is sure that they’re genuine smiles (and not gas or anything!) and he’s done it a few times today. It’s so cute to see! When I eventually snap a picture of him smiling, I will definitely post it. A lot has happened today, and we do feel like it’s a good step forward – both in his care and in the way it feels to us.

10:50pm: We’ve settled in down here and found our way around tonight. Kevin took some more from the bottle and Dawn is holding him some more. The monitors are setup a little differently down here and they are going off quite a bit — I’m not sure we were really prepared for the transition. We’ll adjust, though, and I’m sure everything will be fine. Kevin’s been awake since around 5:00, so we’re trying to settle him in so he’ll go to bed for a while. He got his feed through this tube just a short while ago so we will watch to make sure he doesn’t get sick or anything while asleep. Hopefully he will settle in and get some good rest so we can get some sleep too.

10:00am: We slept in the room with Kevin again overnight and he slept almost all night. We woke up regularly with his alarms going off, but they never seem to bother him. He must think beeping is the normal background noise of life. Dawn is trying to bottle feed again this morning but he doesn’t seem too interested. It’s a difficult balance with learning to feed. He needs to get lots of food and calories via his tube so he can grow and fatten up, but then he never gets so hungry that he really wants to bottle feed. But we will continue to work with the timings and see if we can’t hit it at the right times when he’s wide awake and wanting to eat.

5:00pm: It’s been a mostly quiet and independent day for us. The nurses come in to give him his medicine, but otherwise we have been moving him from the bed to the chair to be held on our own. His chest x-ray looked better again today, although they said it still wasn’t to where they would like him to be. They went down on some of his medications, and up a bit more on his feeding volume. He’s still under his birth weight, now weighting just a little over 7 pounds. So he looks pretty small for a one-month-old! Dawn and I have both held for a while today. It’s hard to tell if he is making any more sound from his vocal chords since he has a lot of junk caught in his throat that he can’t quite cough up yet. We’re going to give him a bath in a little bit and the nurse is finding an outfit for him. He had never worn clothes until yesterday, since they just keep them in a diaper in the PICU. We’ll be finding some of his own clothes to put on him too, but they have to be just right in order to allow for his wires that are still hooked up.

8:15am: Kevin slept well for almost 12 hours overnight. I guess his body needs some good rest to continue recovering. He was rudely awakened this morning with a blood draw, but he seems to recover quickly from those things after having been poked and prodded for over a month. Dawn’s holding him again now, which can do more easily now. We can just pick him up and move him around whenever we want, with fewer wires to mess around with. His voice seems about the same, maybe a little tiny bit better. It’s hard to tell because he makes quieter sounds but when he cries it is still mostly air. His throat still seems to hurt after everything he’s had in there, so he still gets some pain medication for that when he needs it. We are going to continue to try feeding today to see how he does. He seems to be handling it pretty well, but he just doesn’t get hungry enough to want it so bad that he really eats from the bottle.

11:30am: Kevin’s labs looked mostly stable or improved since yesterday. His x-ray looked a little worse to us, but the doctors haven’t read it yet and cardiology hasn’t come around yet, so we don’t know what their interpretation is. Of course, they always tell us to look at the patient first before the numbers. Even if his x-ray looks a little worse today, he seems to be breathing better, and that’s what matters. The lungs may take weeks to look better on x-rays. They are slowly weening him off his oxygen today, and currently he’s on 1/8 liter at 60% (to get technical) and still keeping good sats. So he’s doing well and they may actually take him completely off the oxygen today if they can continue to turn him down without any problems. Even if it takes another day or two, though, it’s still a good thing. He’s continuing to adapt to feeding, but there is a chance he will come home with his NG tube in (through his nose into his stomach). The nurse showed us today how to make sure it’s in his stomach and not in his lungs and we’ll get more instructions on how to deal with that as we go along. He just filled his diaper and then peed all over his outfit and pillow as we changed him. What a little stinker.

6:00pm: After a couple of small puking incidents and a few outfit changes today, Kevin is sleeping calmly at the moment. He doesn’t like getting his medicine into his tummy very much, so they need to go really slow with it. The last time he puked it right up so they had to give it again. He seems pretty comfortable these days, despite his pain meds continuing to be tapered. They haven’t turned off his oxygen – in fact, they’ve increased it a bit. They are just testing to see how he reacts to different settings and say it’s no big deal if he takes another day or two to get off the oxygen.

8:00pm: Emily came up to visit and got to hold her little brother for the first time. She’s a very proud big sister!

11:45am: Dawn got to get out a bit with her mom and sister last night, and again this morning they are going to the mall. I’m here with the boy while they are all out so Dawn can at least remember what fresh air is! Kevin continues to do well, but is still spitting up. We’re trying to start burping him because he might be swallowing air with his pacifier and there is also air in the feeding tube sometimes. So maybe some of his spitting up is caused by not being burped. They are also continuing to watch his breathing rate. Sometimes it gets up in the 70’s or 80’s, which they consider too high. They’re not really concerned about it, but are trying to figure out if it’s his way of compensating for getting a little less oxygen supplied to him, for example. Maybe they need to ween off the oxygen a little slower. Normally he breathes fine, but just sometimes has short spurts of rapid breaths. His 2-hour feed is almost complete and he’s settling in for a nap.

6:00pm: Kevin got another bath after spitting up some more. Everything continues as normal. There will probably be fewer updates from now on, since they are not changing his meds often and there just isn’t as much dramatic change going on like in weeks past.

10:10am: Today is the end of our 5th week in Iowa City – he’s 5 weeks old tomorrow! I am heading home today to be with Emily while Dawn stays up here with Kevin. I might make a trip or two back during the week and will probably come back up next weekend. We have checked out of the Rossi house here at the hospital and Dawn will just be staying in the room with Kevin. Not many changes since yesterday for him. He’s down on his oxygen some more and doing fine, and eating some more from the bottle without spitting up. He is getting his little voice back a bit more every day, although he still doesn’t cry. He makes more sounds when he makes little baby sounds or has the hiccups (which he gets often). One thing they will continue to work on is getting him off continous feeds and work towards bolus feeds – giving him his food all at once through the NG tube instead of over the course of 2 hours like they are now. They don’t like to send babies home on continuous feeds because they should still be hooked up to monitors. They said there is a chance he could come home on oxygen, which is not all that abnormal. So it’s not like he has to be fully disconnected from everything and thriving on his own before they would send him home. We still don’t have any idea how long he’ll be here, but every day it feels a little bit closer.

2:45pm: They’ve decided to switch Kevin’s feedings to 1 hour of feeding and 2 hours without. This is a step towards bolus feeds, and they’ll slowly move towards entire feeds in about 15 minutes and three hours without – more like a typical baby’s schedule. I am heading home shortly and will miss Kevin and Dawn quite a bit, but I’ll be glad to spend time with Emily. Dawn will be fine here with Kevin – she’s great at this kind of thing and she’ll stay right on top of everything that is going on.

2:30pm: Kevin is doing well today. He is gaining weight and his chest x-ray looked better today. The doctors will continue to watch his breathing – he still has spurts of rapid breathing but he does not seem to be in any distress. In fact, he smiled at the doctor while she was watching during one of the fast breathing spurts. They said that Kevin can now go for stroller rides, disconnected from the monitors – we will do that later today. Kevin’s cry is definitely getting louder and he is making more “baby noises”. I miss having Matt here, but I am glad he is now at home with Emily.

11:15pm: Kevin had a good day. We went for a ride around the floor in the stroller – he was awake and looking around and seemed to enjoy himself. It was a little strange not having him hooked up to the monitors, since they disconnected them all for the ride. Santa came to visit today. WHBF Channel 4 from the Quad Cities was here recording and Kevin was on the 10:00 news. He was only on for a few seconds and you could barely see him beneath his blanket, but we saved the video of course. He did a great job at eating from his bottle today. He took more than half of his 9:00 feed from the bottle without any problems. He is starting to act more like a baby his age – he is awake more and sometimes gets fussy. Overall, though, he is a content little guy. I am doing well up here by myself – I have a laptop provided by the hospital and Matt and I can chat on AOL instant messenger. Kevin has fallen asleep for the evening, I will post another update in the morning.

9:45am: Kevin did well last night. This morning they took him off off oxygen to see how he does. His nasal canula was a little clogged and it was not in his nose half of the time, so he was not getting much from it anyway. So far he is doing fine without it. He ate well from his bottle again this morning and I think the doctors are going to adjust his feeds again today so he can get on a more normal feeding schedule.

2:40pm: In case anyone wants to see it, the video of Kevin on the local news is now up. It’s 12MB so may be slow to download unless you have a fast connection. He’s the one in the beginning under the yellow blanket. It’s too bad that didn’t show his face or anything, but it’s still fun just to see him on TV.

9:45pm: Kevin has his nasal canula back in. The doctors want his saturation levels to be above 92% and he was dipping down into the 80’s. They are going to try to wean him slowly tonight rather than just turning the oxygen off. His chest x-ray was unchanged from yesterday. Kevin is eating well from the bottle and usually will take half of his feed from the bottle. I learned how to put in his NG tube today and was able to put it in myself. Kevin hated it and I felt really bad doing it, but it is important for me to know how in the case he comes home with it. My mom came to visit and stayed for the afternoon. Kevin is fast asleep and looks very peaceful.

1:45pm: Kevin was up most of the night. I am not sure why, but his ativan was stopped yesterday – that could be the reason. He was on a taper because he was on morphine for so long. His feeds are now being given to him in 30 minutes. There were a few more changes in his meds – all steps towards getting him home, and he no longer has to have chest x-rays every day. The cardiologists know his x-rays will be cloudy and they will lag behind his progress so they see no need to do them every day. He is down to 40% Oxygen and doing well on that. He may have to come home on oxygen because his lungs took such a beating in the first three weeks. Kevin is still doing well with bottle feeding – if he keeps up the good work he may be able to come home without the NG tube. They did a scope down his throat earlier today to look at his vocal chords. The left one shows very slight improvement, but the right one is compensating better. He finally fell asleep a few minutes ago so I am going to lay down and get some rest.

9:30am: Kevin slept a little better last night. He is currently fast asleep in his swing. The doctors are pretty sure he is experiencing some withdraw symptoms, but since he has been off ativan for 2 days they don’t want to put him back on since the withdraw symptoms should get better soon. I am going to try to get the doctors to be a little more aggressive with his feedings. If he spits up at all they slow down his feedings. Emily was a spitter and spit up all the time, but she always gained weight so the doctors were never concerned about it. Kevin seems to spit up no matter how spread out his feedings are. He doesn’t get hungry since he usually only goes 2 hours without eating. I am going to see if he can have a little more time between feedings so he will be hungry when he is offered a bottle. Last night he got a little hungry and drank all that was in the bottle (35cc’s). He still has his nasal canula but is on room air and so far doing well. The doctor said that some babies like the air being blown up their nose. Hopefully today will be a quiet day and Kevin will catch up on some sleep.

10:30am: Kevin had a good night and he slept well. He is on 25% oxygen and is being stubborn about going on room air (21%). He is taking over half of his feeds from the bottle. He has another swallow study today at 2:00pm to see if his swallowing has improved. He will also have another chest x-ray today – I am really hoping it will show improvement. He is making much more noise now. The nurse could hear him crying in the hallway, which is a major improvement. His withdrawal symptoms are getting much better and he seems to be much more comfortable. He loves being in the swing and looking at his mobile. Matt is coming up tonight to stay for the weekend. It will be nice to have some company.

9:15pm: I (Matt) got up here around dinner time. It’s good to be back and see Dawn and Kevin again. It’s amazing how much can happen and how much he can change in one week. He started his bolus feeds tonight, which means he gets the entire quantity in a short amount of time, just like natural eating. He seemed to do okay with it, but he did spit up quite a bit after starting. It’s hard to tell if it was just him spitting up like any baby would, or because of having it all at once, or because there was also potassium in with the feed. We are going to try again shortly with another feed. He is now completely off oxygen and has been for the last 6 hours. He’s doing fine with it, so it looks like that may be the end of the oxygen tubes for him. His swallow test went okay – he did better than last time but still didn’t handle pure breastmilk consistency very well. It will take a little longer to get him all the way there. We took him on a walk in the stroller tonight which was nice. It seems so simple, yet having him disconnected from monitors and walking around the floor seems so “normal” that it’s almost hard to believe.

8:30am: Kevin had kind of a fussy night but did fine. He is still doing well off oxygen. He took his entire feeding this morning from the bottle, so they didn’t even need to use the NG tube. He is crying loud enough now that it will wake us up, so that’s good (or is it?!). Having not heard him cry for a week and then come back, I definitely notice a big improvement. The doctors always say he looks good and there doesn’t seem to be any real issues remaining other than his eating. He gained more than an ounce since yesterday and now he is 3.344 kilograms, or not quite 7 pounds 6 ounces. So he’s creeeping back up to his birth weight. As he gains weight, we can definitely see it in his cheeks! They haven’t measured his length that we know of.

6:45pm: We talked with the cardiologists today about a schedule for coming home. They said they want him to handle his feeds a little bit better and they want to make sure his electrolytes and other medicines have stabilized so they don’t need to adjust them back and forth. She said she expects him to probably come home sometime this coming week! He is handling his feeds pretty well, but doesn’t ever seem to get hungry enough to eat because they have him eating every 3 hours. He still spits up after (or during) some feedings, but it’s not every time and not something they think is a deal-stopper or anything. They are going to do a bunch of his regular baby tests on monday like a hearing test, etc. He never had any of those things so he’ll get them before he goes home. He will also have another echo on monday to make sure his heart function is good and hopefully still improving.

11:00am: We’re continuing to work on feeding, trying to figure out why he’s still spitting up so much. The cardiologist said it’s not unusual at all for cardiac babies to be facing these issues with eating and that’s he’s doing just fine. She said that medically he’s great and could go home today, but they need a little more time to stabilize his eating. Even if they can’t get it worked out by Christmas, she said they’ll send us home and then we can come back. In other words, they aren’t worried about his condition – they just want to figure out this last bump in the road. They took him off one diruetic (he was on 3) and changed his potassium to twice a day instead of 3 times a day, trying to reduce the number and frequency of medications before he goes home. The potassium can be upsetting to the stomach and taste really bad, so they’d like to get him off that completely if possible. He was smiling really big this morning (I think it was genuine, not gas!) and I got a good picture of it. His best one so far, I think 🙂 Also I took more little videos, one of him sucking on his binky and one of him crying so everyone can hear what he sounds like. This is by far the loudest we’ve ever heard him!

4:15pm: We gave Kevin a bath today and took him for a walk around the floor. I will be leaving again soon to come home for the night with Emily. I’ll come back up tomorrow morning with some extra things – including the carseat – and stay here until the day he comes home.

2:10pm: Kevin continues to work on his feeding as they adjust his calories, quantity, and frequency. He’s still spitting up and they’re trying to figure out how to reduce that yet still get him all the calories he needs in a day. A few hours ago they totally disconnected all his monitors, so for the first time since he was born, he’s not connected to anything! There are no alarms going off anymore which is nice, but it’s also a bit weird. We’re in the habit of looking up at the monitor to make sure he’s breathing okay, but now we have to actually look at him. I suppose that’s a good thing. 🙂 It’s so much easier to lift him up to feed him, change his clothes, and change his sheets now. We could never just pick him up and walk around with him before, but now we can. He has his echo at around 2:30 today to take a final look at his heart function before he’s ready to go home. They’re going to give him some vaccinations today and also go through general wellness checkups and baby care with us.

4:30pm: Kevin screamed and cried the worst we’ve ever seen him do almost all the way through his echo. We should find out later if everything looked okay. The pacemaker nurse came in to check on him and run diagnostics. She said that his pacemaker is operating very efficiently and everything looks perfect. She said he does have a good underlying rythym, meaning if his pacemaker suddenly stopped for some reason his heart wouldn’t stop working or something. They won’t need to do another pacemaker check for 6 months, but we will get a box that we use to monitor it and send diagnostics to them over the phone. We’ll do that every 2 months. They changed the formula used for his feeds again, trying to make it less complex to prepare for when we’re at home. He’s eating again now and we’re crossing our fingers that we won’t have more spit-up!

6:10pm: The results of the echo looked stable. They didn’t do an in-depth one as they have earlier, but things look about the same as before. We would always like to hear them say that things look way better, but that’s not realistic! We’re glad nothing got worse and they didn’t see anything unexpected that might mean an even longer hospital stay. Kevin has continued to have a very fussy day. He hasn’t pooped in 24 hours, so we’re wondering if he’s constipated for some reason, and that could also explain why his belly just doesn’t want any more fluid in it so he keeps spitting up. It’s very frustrating – if he would just eat and keep his food down it would be smooth sailing! What they are going to do is start “apartment mode” tomorrow with us. That means we treat it as if we were at home alone. We do everything, but the nurse is there if we have any questions or need anything. His general checkup is tomorrow at noon. If everything goes well tomorrow there is a chance we could actually come home tomorrow night! Otherwise, it would probably be sometime wednesday. We’re keeping our fingers crossed that feeding will improve and he’ll be in good shape. It’s amazing to be writing updates about the things we need to get done before coming home. We’ve been here 6 weeks as of today, and there were many days that posts like this seemed like a dream. So we’ll take it as it comes, and if he takes an extra day, he takes an extra day. We can deal with it 🙂

8:45am: Last night we were discussing different options with the nurses about how to get Kevin to eat better. They are very receptive to our ideas and plans, so we asked if we could remove his NG tube and see how he does with eating without it in. So we did that last night and he didn’t puke at all for 3 feedings. Unfortunately, he also didn’t eat enough and we couldn’t put more in via the tube. So this morning Dawn put the tube back in so we can continue to give him more volume than he wants to eat on his own. His stomach needs to keep being sretched a bit, since he’s 6 weeks old but hasn’t had 6 weeks of eating to get used to this kind of volume. Dawn gave his medicines orally last night and through the tube this morning on her own. We will get the prescriptions from the hospital pharmacy this morning and practice drawing up the correct dosages. He lost some weight since yesterday (down to 3.314kg from 3.354kg) but that’s probably mostly due to yesterday being a very pukey day. He just didn’t hold as much down as he needed to. They are not that concerned about his weight loss or gain on a single day, but rather the overall trend over several days. He’s still gaining overall, but just a little slower than they want him to. He’s far from being a chubby baby again! We’re still not sure if we will come home tonight or tomorrow (or later) but we’ll see how today goes.

9:30am: Just talked to the cardiologists and if everything remains on track, it looks like Kevin will come home tomorrow instead of tonight. They just want a little more time to stabilize his eating. It’s one more night here, but we won’t complain. 🙂

3:30pm: His hearing test went fine. He’s eating better today and spitting up much less. We got his take-home prescriptions filled (all 6 of them!) and started getting all the syringes and other stuff we need. A bunch of the supplies we need will be shipped directly to our house. We found a local physician who works well with Iowa City and setup his first doctor visit for thursday. We’re getting everything arranged with the home nursing care who will come to our house once or twice a week to check on things. Today has been very independent for us without much help from any nurses so we’re feeling pretty confident about being at home with him on our own. It’s surreal to think that tonight will be our last night sleeping on an uncomfortable couch and chair in this hospital room!

8:30am: As far as we know, everything is still on schedule for us leaving today! He did well overnight and is spitting up much less. He took his whole bottle this morning, so we didn’t even need to use his tube for feeding. He gained some more weight today too, which is a good thing. We’ll post again as plans become finalized for today.

11:00am: We got the official ‘orders’ to leave so we’re packing stuff up and getting ready. We’ve gotten visits from a lot of the different teams of doctors and nurses, all checking in one last time before he goes. We’re so ready to be home, but it still makes us a little nervous. It’s a big change, but we know that he’s ready for it and we are too.

Home Sweet Home!

Well, it’s been over 48 hours since we got home and we’re all still settling in and adjusting. It’s such a change to go from hospital living to being at home – but we love it. He travelled well on the way home from Iowa City – didn’t even make a sound. Emily loves having him home and being able to hold him as long as she wants. Duke seems a bit jealous and the cats don’t even notice he’s here!

He had his first “regular” pediatrician visit yesterday and the doctor said he looks good. It was a bit complicated to fill out his medical history and hospital visits sheets. We’re like, how much detail do you want?! Everything looks good, though, and they don’t need to see us back for about a month. We will see the pediatric cardiologist again on January 5th for a general heart check-up and echo. She’s the same one we saw many times during the pregnancy. We won’t need to see the pacemaker doctors for 6 months in Iowa City. In his final pacemaker tests before we left the hospital, it looked like it was running very efficiently and working very well. This was a tribute to the excellent and patient work of the surgeons who placed the leads on his heart. They were very pleased. He also pulled out his NG tube yesterday. We decided to leave it out and only put it back in when he needed it (if he wouldn’t take his full feed from the bottle). Well, we’ve had eight consecutive feedings where he took the whole thing by bottle! He’s also taken his medicines orally without any problems, and we’ve had very few spit-ups. So we haven’t put the tube back in yet and we’re crossing our fingers that he continues to do well and maybe we don’t have to put it back in at all.

Today he got his first visit from the home nurse, who did a general checkup and got to know Kevin’s specific case. She also weighed him and got 7 pounds 11 ounces – back to his birth weight! She will come twice a week for a few weeks, then slowly reduce the frequency. She’s mostly here to check his weight, give him some shots when he needs them, and to answer any questions we might have. It will be nice to have a regular visitor who can address any concerns we might have. As you might imagine, we can become easily freaked out by little things, even if they are normal. The fear of going back to where we were with his health is always in the back of our heads, and I suspect it always will be.

Since we aren’t getting daily doctor and cardiologist vists and all that stuff, updates to these pages won’t be as frequent anymore. As always, no news is good news! We will continue to post about Kevin’s progress but hopefully it will be more about him reaching normal developmental milestones and being a normal baby rather than medical jargon and tests of the day!

Now that we’re home, we want to take this opportunity to thank everyone who took an interest in Kevin’s health, followed his progress, prayed for him, and loved him from afar. We went into the hospital expecting to stay a week, worried and concerned about him needing a pacemaker. Little did we know that would be the least of our troubles. Three weeks after he was born, we were trying to come to grips with the fact that we were probably going to lose our baby boy. It was the worst thanksgiving of our lives. Then three weeks later, we were preparing to bring him home before Christmas. It will be the best Christmas of our lives. Life can sure throw you some curveballs.

Throughout this long experience, we’ve been reminded that we are surrounded by the best family, friends, neighbors, co-workers, and others that a person could ever hope for. The support and help that we’ve received has been overwhelming. The many emails we received came from those close to us and those we didn’t even know, and kept our spirits up on difficult days. We received help and encouragement from so many people in so many ways, at just the times when we needed it most. It really puts things into perspective… a damaged car, a spill on the carpet, a hard day at work… those things seem so minor and unimportant compared to just having the people around you that you love. We can’t even express what it has meant to us to be surrounded by such amazing people.

Kevin is a fighter. He’s faced the worst odds and been confronted with the most difficult challenges — and he’s pulled through with a grin on his face. He’ll continue to fight, to heal, to grow. He still has challenges ahead and some difficult roadblocks he’ll face in his life. But we can’t wait to see him grow into a boy… a young man… an adult. And to meet all the people who loved him so much and cheered him on before he even knew what life was about.

Thank you all.

Merry Christmas!