livingwithevan.com

Category: Newborn (0-1 month)

  • Happy 1 Month Birthday Evan!

    Happy 1 Month Birthday Evan!

    It may not seem like much, being one month old… but given what Evan has gone through in his short time here we wanted to celebrate a little.

    Evan,

    You never cease to amaze us. Every coo, every quivering lip, every smile, every scowl, every cry, every movement, and every look of amazement as you look around your new world melts our hearts. We’ll be forever in awe of what you can do and we’ll be there every step of the way. Thank you for choosing us as your parents and being such a strong little boy.

    Love,

    Mommy and Daddy

     

  • Post Pacemaker Surgery – Day 3

    Post Pacemaker Surgery – Day 3

    A little bit of catch up is in order… my apologies.  Yesterday Evan came off of the ventilator around noon.  He had completed his sprints beautifully and came off it without any problems.  He thrashed around a little bit so the nurses gave him some dexamethasone to reduce some swelling in his throat.  He was still in some discomfort and once again had his little squeaky cry back but honestly sounded and looked better than the first time off the vent.  Well, except for the coughing.  His lung x-ray looked clear but he still has a lot of congestion in his chest and does his best to cough but he is obviously a little tender.  The nurse tries to suction him, which of course is the equivalent of baby torture, but nothing much comes up.  It must just be out of reach.  He sounds much worse than he really is and with his solid coughing he should clear it up in a couple days.

    After coming off the vent the nurses like to wait 6 hours before resuming feeding.  Because he is awesome and because he was going to have breastmilk, they let him start eating a little earlier and Evan was very happy about this.  They start off on little increments and he chows it down like a champ.  Hope fully he will be able to bounce back with eating better this time around than the first.  But the best thing about coming off the vent is being able to hold the baby!  We got our snuggles in for a few hours and the whole fam benefited greatly from this.  You don’t know how much you miss something until you can’t do it anymore, that’s for sure.  Although he was no longer on the vent and had significantly gone down on medications and support, they like to keep babies overnight in the PCTU for observation

    This morning, Evan came off of Diurel and his arterial line was taken out.  We moved from the PCTU down to general care around Noon!  YAY!  This should be our last stopbefore leaving the hospital.  He still has his double lumen intracardiac broviac and an IV in his left hand.  They will need to sedate him to remove the broviac so they are leaving the peripheral IV in for that purpose.  His feeds are continuing to increase.  Evan seems to have topped out at 20 ml but he has gone from 41 to 52 ml this evening and doesn’t continue to take more orally.  The rest goes down his tube and it looks like we’ll have to work on this issue at home. Although he isn’t increasing in his oral intake we are very proud of his progress and it appears he is recovering from the vent much quicker this time around.

    There was some concern about fluid retention and the nurses are working at finding the right balance of medications and dosing.  There was also some concern about fluid around Evan’s heart so an ultrasound was done by Dr. Mackie.  I honestly don’t see how he can understand anything from the horribly grainy images, but his conclusion is that although there is some fluid around his heart it is not enough to worry about or drain.  We were also able to take a small walk around the hospital floor this afternoon.  Because Evan isn’t in a room with 24-hour nursing staff present he has to wear a tracking bracelet so he doesn’t get stolen.  Our walk was limited to the areas not in front of elevators or down hallways.  We are hoping that tomorrow we can go for a real walk and – gasp – maybe even venture outside!  They are able to disable his house arrest bracelet for a set amount of time and we can certainly walk around the hospital.  Outside might be pushing it but it will happen this week I’m sure.  I now predict that we will be discharged on Thursday, unless there are issues scheduling his broviac removal and “little man” procedure.  Then it would be Friday, but this week nonetheless.  And we’d still meet our goal of leaving before he is 1 month old.

    Go Evan Go!

  • Post Pacemaker Surgery – Day 1

    It’s been a day and a half since Evan’s pacemaker was put in and he’s doing fairly well. A doctor came by this morning and “plugged into” the pacemaker to check everything out and said it was working great. There is a sensor that you hold up to the skin near the pacemaker and it communicates with the pacemaker. They are able to run diagnostics, change settings, and do all kinds of other things that I know nothing about. Once we go home we will have regular pacemaker checkups performed over the phone by holding a telephone up to the pacemaker and it will talk to a computer on the other end. Cool. I talked to him a little more about the decision to use a single chamber pacemaker instead of the dual since I was still grey on this. There were several reasons but the one that sticks in my head is that Evan is going to have at least two more surgeries and during those the surgeons will be working on and around the atrium. If they were to place the atrium leads now there is a chance that they would need to be moved or replaced during subsequent surgeries. When a lead is placed careful attention is payed to how well it’s conducting to the heart, scar tissue from moving the lead can reduce the conductivity of the heart tissues and make finding an optimal place for the lead more difficult. It’s not optimal that the atrium and ventricle are not firing synchronously and will eventually be corrected with a dual chamber pacemaker but with a baby this is much less of an issue… he’s not going to be running any marathons anytime soon.

    Pretty normal things going on today for after surgery recovery… blood pressure stabilization, fluid retention, pain management, etc. He is still on the ventilator and they have been weaning him off throughout the day; the settings are currently as low as they go. Tonight they will do ‘sprints’ with him which are one hour blocks where they turn the ventilator down all the way and monitor his own breathing and how well his body is using the oxygen through blood tests and other monitoring. If that goes well then he’ll come off of the vent tomorrow. His blood pressure was a little iffy so they gave him some meds for that and that has since stabilized and the meds stopped. He’s on constant morphine for pain and gets an ‘extra’ dose when he looks particularly uncomfortable, like bath time. Last night when I was here the nurse had to suction the fluids out of his throat, something done quite often, but for some reason he was not happy about it. Instantly you could see on the monitor his blood pressure and heart rate shoot up and the looks on his face screamed “ouch.” The nurse was great she stopped what she was doing and went for the morphine, within a minute or two he had calmed down. It’s such a hard thing to see your child in such pain and be able to do nothing more than to caress their head and whisper into their ear, which I am sure does very little for them and more for me.

    One potential issue today… a fever. We came back from dinner and the nurse said he was at 102°F. He was pretty bundled up and it is very warm in here for some reason. They immediately put him on antibiotics (vancomycin, which is pretty much the end all be all of antibiotics) and took samples. It will be 2 days before the results come back since the cultures need time to grow. In the meantime they will treat him as though he does have something. If it turns out to be nothing great, but if it is something then they are 2 days ahead of it with antibiotics. His temperature was down to 97.9 the last time we checked so it might have been nothing at all. We’ll wait and see. It’s these kinds of things that you see a lot here that can be difficult. It seems that many of the heart kids are here not just here for heart problems but they have something else happen while they are here or when they go home that brings them back. Infections, viruses, etc. We’ve seen kids with MRSA, kids with stomach and intestine problems, etc, etc. One very sad story is of a girl named Eva that we were next to in the ICU. She was born in May, cleft lip and palate, premature, and a heart condition. She was too small to undergo the full Norwood operation and so underwent a hybrid operation to hold her over until she got bigger. She spent the next several weeks in the ICU fighting viral infections where she could not eat anything for 2 weeks while it ran its course. She had 3-4 of these infections, that’s 6-8 weeks without food in total, and 6-8 weeks of not growing. She was on IV nutrition, but that’s not going to help you grow. Her parents live 75 miles from here and took turns being with her, dad after work every night and mom all weekend, they also have a 2 year old at home. On July 28, the same day that we were kissing Evan goodbye for his big surgery, little Eva died of complications to a heart catheterization procedure. Sarah and I just found out about this the day before Evan’s pacemaker surgery and it hit us pretty hard. My heart goes out to the parents of the little ones that are not as fortunate as we have been.

    Evan opened his eyes nice and wide for the first time after surgery tonight… was great to see those beautiful eyes. He looked around for a little bit and we had a good conversation about how well he was doing and to keep it up. Then he got bored and fell back to sleep.

    I’ve also updated the Treatment of TA/l-TGA page with more detailed information of what was performed during the first surgery if you are interested.

  • Pacemaker Day – Update

    Pacemaker Day – Update

     

    They took Evan back to prep him for surgery at about 2:00pm. The surgery is expected to be about 3 hours. Right now we’re waiting for the surgeon to come and talk to us before the surgery starts. Dr. Hirsch had to go out of town today for work so our surgeon today is Dr. Eric Devaney. Sarah and I are both pretty nervous and doing what we can to keep our minds off of it all. Once the surgeon comes to talk to us I think I am going to go for a quick drive and Sarah is going to go grab some lunch in the cafeteria. I suspect it will be at least an hour and a half before we get an update. I am beginning to think that the surgeon is not going to come talk to us beforehand… that seems to be the norm around here with much of the staff.

    Dr. Devaney came and talked to us… and now the surgery has undoubtedly begun. Most of what he said we have already heard and I have already conveyed on the website. The new piece of information is that the electrophysiologist and cardiologists decided to only put a pacing wire on Evan’s ventricle for right now. In 4-6 months when he has his hemi-Fontan procedure they will put a lead on his atrium. The thought is that 1) they can pace his ventricle independently from his atrium’s rhythm without issue, this is what they have been doing for the last two weeks. 2) during the 2nd surgery the pacing wires would be in the way, need to be removed, and replaced.

    More updates later… but here are some pictures for your viewing pleasure.


  • Not home this weekend… but soon.

    Not home this weekend… but soon.

    One of the cardiologists came to see us this morning. She wanted to give us a heads up that the surgeon, cardiologists, and electrophysiologists are in agreement that the pacemaker should be done before Evan goes home. He’s scheduled to go back to the OR tomorrow at around 11:30AM. Normally pacemakers go in a persons upper left chest and the leads are fed through an artery and attached to the inside wall of the heart. In babies there is not enough room so they place it in his abdominal space and the leads are attached to the outside of the heart. They will go through the existing incision site to attach the leads to the heart and make a separate incision in his belly to put the pacemaker. Since he’ll be in the OR and knocked out again he will need to be on a ventilator which is pretty unfortunate, he’s just now starting to do well with feedings so we might be starting at square one with that again. Recovery time for a pacemaker is very short, we will likely spend Friday night in the ICU and he’ll be taken off of the ventilator and moved to moderate care on Saturday. After that all we’ll be waiting for is his little boy surgery and we’ll be on our way home. I expect that we will be home early next week! I really thought that we would be in the hospital for 5-6 weeks, but he’s done better than anyone would have expected and I couldn’t be happier. I’m so excited to spend some time at home with him before I have to go back to work. They are sending someone specializing in pacemakers to talk to us about it all, so I’ll try and post again after that with any new information information.

  • Slacking on the updates update.

    Slacking on the updates update.

    You know it’s time for an update when you wake up to several messages on Facebook, text messages, and a voice mail…Sorry I have been slacking on the updates.

    The truth is there has not been much going on to tell you other than he’s cute and cuddly, but you already knew that. The plan last week was to wait until Monday (yesterday) and make the decision on whether or not Evan needed a pacemaker. Well, wouldn’t you know it, Monday morning his own rhythm starting overriding the external pacemaker. The pacemaker is set to 100 bpm (beats per minute) and his little heart was going at 110-125 on its own! (Normal newborn heart rate is 120-160) Unfortunately it was short lived and was still not a regular rhythm. It did give the doctor’s hope that maybe he’s no longer in complete heart block and it’s only partial. They want to give it a couple more days and see what happens. <sigh> It should be a good thing, but we’re not very hopeful that it’s going to change enough to make a pacemaker unnecessary. At this point it seems like a pacemaker is the best thing for him and would make Sarah and I feel much more comfortable taking him home. Since yesterday morning I have not seen him override the pacemaker and when it was turned down his underlying rate was in the mid 70’s again.

    The picture on the left is from a display case outside our room that shows all kinds of medical devices that are common in cardiac kids. This particular shot is of a pacemaker. You can see how small it is in comparison to my car key.

    Evan had his first echocardiogram since the surgery. He was not a happy camper, although he was not very happy in general yesterday. He calmed down after about 5 minutes and let the man do his job in peace. We heard some results this morning which were good. The shunt that was placed looks good, no issues there. There is some very minor leaking in a couple of his valves which is not a concern, just something to watch.

    I was sitting in a rocking chair with Evan and after I got up and put him in the crib that my stomach felt cold…and wet. Diapers leak, even the good ones, end of story.

    Evan has been promoted to all oral medications, but he still has several. A couple diuretics, aspirin to prevent clots, Reglan to promote digestion, Tylenol and/or Motrin for pain, and Zantac for acid reflux.

    Evan loves to look around and loves to sit up. He can hold his head up a little bit and moves it from side to side to look at things. We sat him up in the Boppy and he looks around the room in amazement at everything he sees. Yesterday he watched some Family Guy and some Bachelor, nothing but quality television for our son.

    Click on any of the images below to see them larger. (is that red hair that I see? are we going to have a little ginger baby!!? ohhh no, it’s strawberry blonde, it’s strawberry blonde…)

  • It’s Friday!

    It’s Friday!

    OK… that has much less meaning when you’re not working and all of your days and nights run together. But it still feels good to say it.

    There is nothing new happening here. We’re still working on feeding and the little guy is still having trouble. We attempt to feed him by bottle for a few minutes and once he gets tired of it we switch over the rest of the feeding to his NG tube. If he’s interested then we also give him the pacifier so that he associates sucking with his belly getting full. The doctors and nurses say that this is completely normal after such a surgery and not eating at all for several days. It will just take time for him to relearn. I think that his “feeding schedule” also has a big impact on how well he’s doing. Here at the hospital it’s every 3 hours, no if’s, and’s, or but’s. He must have his calories…. they are calorie crazy. Babies sleep, eat, and poop, not necessarily in that order and certainly not according to a clock.

    It’s likely that Dr. Hirsch will make the decision on the pacemaker early next week. Although Sarah and I don’t like the idea of him having a pacemaker we feel like it’s the best thing for him. Even if he comes out of heart block today and everything looks great there is no guarantee that he won’t go back into heart block at a later time. With his heart’s anatomy he will always be at a higher risk for complete heart block and will very likely need a pacemaker someday anyway. I feel like if he gets it now it’s kind of a safety net. I would hate to go home and in 3 months, he go back into heart block. Granted, it’s not life threatening, his heart will still beat, but the risk is more than I care to take.

    Here are a few pictures that I took this morning of Evan and his favorite bear as well as his feeding tube. The tube, called an NG tube, goes all the way into his stomach. We add fortified breast milk to an open syringe and allow gravity to slowly drain the milk into his stomach. Sarah has been a milk machine, this morning she pumped 11 oz! That’s enough for 5 feedings.

  • Awwwww…… Look at that smile.

    Evan loves his bear. from William Wood on Vimeo.

  • Setbacks

    Setbacks

    The past few days have been a little rougher for us. Both Bill and I are beginning to feel the strain of doing this routine over and over.  It’s not like we haven’t been enormously blessed and have had such a smooth experience thus far, but we are entering a lull and need to get over this hump for the sake of our sanity.  We’ve heard from other families how they have been here for 4 months, home for 4 days, and then right back in the hospital.  I cannot imagine what it must be like for those long-term families when we’ve only been here for 2 weeks.  We just can’t wait to walk into the next room to pick up our boy free from wires and tubes instead of driving 20 minutes for tethered snuggling sessions.  Thanks for all the words of encouragement – they really help to lift our spirits.

    Evan has been moved to “moderate care” and it is actually quite comfortable and less crowded in there.  He is struggling with eating, which he never really did before.  We think the vent tubes scratched up his mouth and throat and has just made swallowing painful for him.  When bottle feeding, he often makes these horrific gagging faces and looks like he is in pain.  We’ve asked for some pain meds but it will just take time for the tenderness to go away.  In the meantime, he is being tube fed and has been tolerating that well, but he is throwing up more and never did that before.  His food is supplemented to make sure he is getting enough calories.  His metabolism is faster because his heart has to work harder so he needs the extra calories to make sure he gains weight.  Please pray he can take his bottles so we can get rid of his NG tube.

    Evan is still in complete heart block.  On his own, his ventricles do not get the signal from his atrium and therefore do not beat fast enough. His heartrate should be 140-160 beats/min.  Currently, on his own his ventricles pace at 58 beats/min yesterday and 72 beats/min today.  That isn’t going to work.  The doctors will not let him leave the hospital with complete heart block without getting a pacemaker first.  They like to give kids 10-14 days after surgery to give time for swelling and edema to go down.  The docs will make their decision Friday or Monday and schedule it for next week.  It will probably give us an additional 5ish days in the hospital. 
     Dr. Hirsch stopped by today to talk to us about it and she actually said that he had his own beat in the OR and it wasn’t until bringing him to the ICU that he developed heart block.  So there is hope it can come back.  Please pray for this.

    Evan continues to poop like a champ but now he has diaper rash.  Poor buddy!  We now slather a super thick cream on his buns so
     hopefully it will go away soon.  And daddy fell victim to the first pee spray yesterday.  Frankly I’m surprised it has taken this long.

    Maybe it is just me because I am new to this or maybe it is a change that happens between 1 and 2 weeks old, but lately when looking at Evan his eyes cross pretty frequently.  Maybe his vision is improving and he is trying to focus??  Fellow parents, is this normal?

     

  • Evan after surgery

    Dr. Hirsch came to talk to us at about 1:45pm and said that it went as expected. There was a little bleeding that they had to take care of in the OR but nothing out of the ordinary and nothing to cause concern, it just took some time. During the surgery she completed all of the things as planned and went ahead and inserted the cardiac IV line under the skin and into the heart. She told us that Evan would be wheeled up to the PCTU at around 2:30 and by 3:30 we should be able to see him. The unit was not ready for us at 3:30 and we had to wait until about 4:15pm. Our time with Evan was cut short (we got about 30 minutes with him) as a patient in the space next to Evan was being brought in and they do not allow people in the room during these times. We were told to come back in an hour. Since then we have spent some more time with him, talked to his doctor’s and nurses, and gotten a slightly better understanding of what is going on.

    In general Evan is doing well and the doctor’s and nurses are watching him very closely as his body responds to the surgery. A couple things that they are keeping a close eye on and working proactively to remedy are 1) his eyes are dilated and non-responsive, we are told that this is a typical reaction to atropine usage during surgery (atropine is used to help the nodes of the heart fire) and should wear off in a day or so. It can also be a sign of something more serious so they will perform an ultrasound on his brain to make sure that everything is ok. 2) His belly and chest cavity are filling with fluids due to the surgery, this is a normal reaction but the excess fluids need to be drained one way or another. Excess fluids cause undue stress on the heart and lungs. Typically, this is done through medications like lasix where the fluids will be processed by the kidney and excreted as urine. This also will take several days to remedy. He’s on many medications and has many tubes and wires all over him. He’s obviously on medication for pain, he’s feeling nothing. He’s also on medication for blood pressure, swelling, fluid retention, and vasal dilation (expanding and stretching of veins/arteries). As the days progress the medications and assistance from machines will be turned down as Evan gains the ability to do them on his own. Right now he is heavily sedated, he does not respond to our touch, or move on his own, he’s completely and utterly out of it. Tonight they will do no weaning from the meds or equipment and just give his body time to adjust.

    CAUTION:
    I am going to describe the scene in much more detail (and pictures) on a separate page. Some people may consider these graphic and be bothered by them. If you want to see the pictures and read the detail you can go to this webpage.