10 days. No post in 10 days means good news for Evan. But no post in 10 days also means a bunch of well-intentioned individuals need their baby Evan fix. I apologize for that. The post delay is my fault. Seems to be that having a baby makes you the busiest you have ever been. It’s all I can do to keep up with a calendar for all of Evan’s events. And it’s all we can do to keep up with photos and videos, so they are a little bit more scarce as we aren’t always as camera ready as we were before.
Since the last post Grandma Nancee (my mom) came down and spent a few days with us. Unfortunately zero photographic evidence of this exists, but it was a lovely time. She was very useful in helping us get organized, putting things away, cooking, cleaning, gardening, and of course watching after the little man. I honestly don’t know how couples manage by themselves (I mean without extended family help). One fortunate thing throughout all of this is that I am healed, am physically able, and we were able to learn a bit about Evan’s personality and his routine before coming home. I can’t imagine having other kids at home and/or coming home with a 2 day old baby.
Dad had to go back to work starting Tuesday the 6th. It stinks that all of his time was used up in the hospital but we are grateful that he was able to be there and not have to use vacation, which we are both saving for the second surgery. He does have more of an opportunity to have a flexible work schedule and has been able to be around as much as he can, which is very helpful. I love being able to be home with baby boy, even if it is tiring and feels unproductive at times. Just relishing in those itty bitty baby moments makes my heart soar, so I can’t imagine how much Dad must think of coming home to snuggle with Evan. I mean, who wouldn’t want to snuggle with this cutie pie? Especially when he is zonked out in a milk coma.
We are still working on Evan’s feeds, which apparently is the thing you do with your heart baby. We have ng tube feeding supplies but Evan has other plans and has pulled out his tube. We decided to leave it out and see how he does on his own because we truly don’t know. Doctor’s orders are to feed him 75ml (about 2.5 oz) every 3 hours, with a total of 600ml at the end of the day. He is drinking unfortified breastmilk (mine tested between 24-30 cal/oz) and is doing OK but never really hitting goal. He is closer to hitting it some days more than others. We are concerned about his weight gain, or lack of it. A visiting nurse is also coming to the house 1-2 times a week and he is weighed at this appointment along with cardiologist and pediatrician appointments so maybe because so many scales are being used it is not providing consistent and reliable data. Maybe it is becoming a bit over-analyzed at this point. At our cardiologist appointment on the 12th, we voiced our concern about feeding and weight and our doctor wants us to keep the tube out until our appointment next week and see how he does. She feels the ng tube can do more long-term harm than good and she believes that if Evan truly needs assistance in getting his caloric intake, he should be fitted with a g tube. I’m not too excited about that idea so hopefully Evan was listening and will kick up his feeding a bit.
The rest of the cardiologist appointment went just as planned. The shunt looks great but she wants to keep an eye on it so we will have weekly cardiologist appointments. The echo on his heart showed that everything still looks like it should. She looked over his meds and agreed at the amounts. His heart med, captopril, is a compound medicine and there are only 2 pharmacies we can go to to get it refilled, so I’m glad we found that out. Uneventful is good. 🙂 The next day we had the visiting nurse stop by and of course you think of more questions when you aren’t at the doctor’s office. I asked about his potassium levels because when we were in the hospital they gave him potassium pretty frequently because the diuretic furosemide that he is on can deplete it. She’s going to check with the cardiologist. I am also on the lookout for dehydration since he does not seem to have the same huge pee diapers that he was having after a dose of furosemide. Other than those very minor things, he is just wonderful.
Evan and I also tested out a moby wrap that a friend is letting us borrow. I still need lots of practice with it but so far he really likes being in it. It is a bit warmer than I had thought and the material is pretty stretchy and it is supposed to be that way but after wearing it for a bit it tends to stretch too far so I need to make it tighter. Evan doesn’t appear to mind too much tho 🙂 We also gave Evan a bath in his new big boy tub. Previously he had only gotten sponge baths so immersion in warm water was a new adventure for him. He kept looking at us with a “what the heck are you people doing” expression. No crying or fussing but plenty of big-eyed expressions. Afterward, however, he gave us the signal to get him clothed and bundled up as quickly as possible.
The short of it: Evan had a seizure early this morning and several more throughout the day. They are the result of a stroke he had some time ago but not sure when. He is comfortable, sleeping, and stable. His brain activity is being monitored continuously for 24-48 hours. He is NPO again (removed from feeding). We were scared but it appears he is ok for now. Here is how we got here…
I received a phone call at 4:45 am from a cardiology fellow. Overnight calls while your child is in the hospital are never a good thing. I was so out of it that I didn’t answer the phone, but had my bearings enough to immediately listen to the voicemail he left. Heart racing, I learned that Evan had a seizure and that he was currently undergoing a CT scan. Thank God he said the phone number for Moderate Care twice so I could make sure the reality of what I was doing was not some scary dream.
I called Moderate Care and spoke to nurse practitioner Denise who gave further details on the fellow’s message. She explained that at around 3 this morning, Evan’s oxygen saturation alarm was going off. The nurse suspected that perhaps the pulse ox band just came undone (it does happen a lot, but mostly when they are awake and moving or when you are holding them and moving around.) When she came to check it out, she noticed that Evan looked “mottled and dusky.” She took a blood gas sample and gave him oxygen. His pH was a little low, lactate was ok. After a little while he started doing better and became more responsive. The plan was to take another blood gas in an hour and see how it looks at that time.
At 3:30, the nurse went to reposition him and have him sit in his Boppy. Suddenly he stopped crying and moving, his breathing became sleep apnea like, his head moved to the left, his eyes deviated off to the side. She said he went “unresponsive” and called the cardiac fellow in to look. They pulled another blood gas and this had a better pH, lactate was still ok, white blood count was normal (indicating no infection), hematocrit was fine (indicating good response to transfusion yesterday), and his potassium was a little low so they gave him some extra. There was a concern he was having a seizure so they started him on phenobarbital. His feeds were turned off and they ordered a CT scan (he can’t get a MRI due to his pacemaker, but I think the CT is the default test).
Evan getting hooked up to the EEG
By the time we got to the hospital at 6:45, Evan was already back from his testing, his birthday balloons detached and bunched together because they had to move him in his bed for the procedure. He looked completely normal, still had his feeding tube in (which Evan ripped out but that’s for the better considering he is NPO again). I got to snuggle with him until 8:30 (Dad is feeling sickish and wants to keep some distance) until I had to step out for a bit. When I came back at 9 people had arrived to place Evan on EEG or Electroencephalogram. They are going to continuously monitor his brain activity for 24-48 hours, depending on what they see. Additionally, he is being video and voice recorded as well, so they can see what happens when he has one of these fits.
Dr. LaPage playing with pacemaker settings
At 10:30, Dr. LaPage, the electrophysiologist, came by to check Evan’s pacemaker setting. He has been having low diastolic blood pressures today and they wanted to see if raising his heartrate from 110 to 120 would improve this value. It didn’t so they left it at 110. When your heart is in diastole, it is filling with blood before it contracts again. Your diastolic BP is the lower number. The fear is that a low diastolic BP may have contributed to his previous cardiac episode on the 16th, so they’ve been monitoring this value as well. It had normally been in the 40s but it was in the low 20s when they started trying to make adjustments. Its a teeter-totter balance between pacemaker rates and medications.
Yet another echo
An echo was ordered to see if perhaps there is something lingering with his broviac, a catheter placed into his heart during his first surgery. Perhaps a blood clot formed and traveled to his brain – the nurse suggested. Wait – blood clot? That sounds like a stroke. Thought we were talking about seizure here. A thorough echo was performed around 1:45 pm. It was perhaps the clearest images of his heart we had ever seen and we were pestering the technician with structural questions. “We’re nerdy science people who didn’t go into medicine,” is our explanation.
Dr. Leber and Neurology Fellow exam Evan
During the echo, the neurologist, Dr. Leber, and a fellow came to talk to us. During the conversation we talked about the CT scan images and he said, “Do you want to see them?” Why yes, yes we do. The majority of the questions resulted from the images. Evan had a stroke, not yesterday and not when he was born, but sometime. The doctor did make a comment like it might have happened “a week ago.” Hmm a week ago… what happened then… Oh that’s right his cardiac incident where he went critical with acidosis and was rushed back to PCTU. Unfortunately this is the only CT scan we have so we can’t compare to anything, but Evan did have an ultrasound performed on his head the day of his surgery and when looking at those images (although not nearly as easy to see) the doctor did not see any damage at that time. Damage. Yes, Evan has some on the left side of his brain. On the CT images, it looks quite large.
This isn’t Evan’s brain and I think it is a “normal” adult one but I’m not sure. I just drew this up for visual reference. A CT scan is like slices of your body from your toes to your head, so when you look at images of the brain its like looking up someone’s nose. The left and rights are backwards. The area of injury permeates through several “slices” of Evan’s brain. The image I drew would be the damage at its largest. As you travel the slices toward the top of his head or toward his toes, the area tapers in dimension. CT scans are gray in color, and the damaged areas turn darker gray. White is the skull. Black is water and having some at his age is ok.
So what will the damage be? It is hard to say in a baby this young. If it were you or I, the doctor said we might have trouble feeling our right leg, hand, or right side of our face. We might have trouble with verbal comprehension but not talking. We might have issues with being able to name/identify our fingers on our hand. We could have attention problems. Who knows how this will affect Evan. His brain is growing so rapidly that maybe no damage will be done. We don’t even know his handedness yet (I’m thinking southpaw but that’s just me). There is another area of concern on Evan’s right side as well. Evidently, as the damaged stroke area gets older, it gets darker in the CT scans. There is a slightly shaded area on his right side that would be indicative of a separate stroke incident if it turns out to be something. They are going to check in a week to see if the area darkens and to confirm if there was another stroke (think of the stroke areas as slowing developing polaroid images). Even when he is 20 a CT scan will show a dark area on his left side from the confirmed stroke region. It might get smaller, but it should get darker. The neurologist said that in adults the area retains a brain look but in babies it often disintegrates into a watery slush (?) but couldn’t say why this is so. Water on the CT scan looks black, so as he ages it should turn into a blackened mass.
The treatment for now is to continue to monitor the seizures on the EEG. Seizures can damage the brain cells on the fringes of the stroke region. Or it can further damage blood supply to the stroke areas thereby causing more damage to previously unaffected areas. If they see more seizure activity, they will manage that with phenobarbital doses. We asked about other medications but that is the best option for babies. In looking up seizure medication lists there are a lot of familiar names. Phenytoin Sodium anyone? More of the wait and see game.
And just after the conclusion of all of this, a nurse drops a package off at Evan’s bedside table. A gift from the VanEseltine family. Lots of tears. Many thanks. Your support, thoughtfulness, and kindness means everything to us and it couldn’t have come at a better time.
Results of the echo are fine. There are no indications of a clot on his broviac or associated with the heart. Maybe there was one and it was missed before and that traveled to his brain? The neurologist said it is possible that happened before, but this latest echo again did not show any smoking gun. Good news is because we identified it as a brain issue, there is no need to keep him NPO so they will start feeding him sooner than later, starting over on the complex feeding protocol.
Please pray for the doctors to have the wisdom to figure all of this out. If he had 2 separate events then what is the source? Are there still more potential clots out there? Could there be more events? How much longer will the seizures last?
Sensor that communicates to the pacemaker through the skin.
Dr. LaPage playing with pacemaker settings
Mom documenting everything she can on such a busy day.
Being in general care is pretty nice. The room is a typical hospital set-up; 2 beds in the room separated by a curtain running down the middle. There is also a couch that can be used for a bed, meaning Evan would be able to have an overnight visitor. I elected to stay overnight with him and give this whole sleepless Mommy thing a trial run. We had a midnight feeding and then got all settled down and sleeping around 1ish. Evan had another feeding at 3am and the nurse must have just set it up to be a tube feeding because he was sleeping. I woke up to Evan getting restless and fussy in the middle of this feeding. That isn’t all too uncommon for him. He has his own personal internal limit and then anything beyond that makes him fuss for a little while and then he calms back down and usually sleeps through the rest of the feeding. He did that and we eventually got all snuggly and sleepy around 415am.
Wouldn’t you know but of course at that time the sticky electrodes on his chest for his ECG decided to randomly not be sticky anymore and his alarm kept going off. Now, the thing about general care is that the nurses have a lot more patients to take care of so the response isn’t the most immediate. It was going off intermittently for about 10 minutes and then it was silenced once and for all. I cannot wait until we aren’t hooked up to things anymore that give false positive results and make a whole lot of noise for nothing.
Evan is still battling a cough as a result from coming off the vent. He sounds junky, like he would have a bad chest cold. About 10 minutes after settling him down from the alarm he had a series of strong coughs. It’s great that he is working on getting things out of his system but they must still hurt a bit to cough that hard, so he was awake and upset. He calmed down easily again at around 5.
At 520ish, a nurse came in to draw some blood. Now, because he still has lines she did not need to poke him or anything but the lines were firmly underneath the blankets and he was fast asleep. No more… the nurse woke him for the blood draw. He was very restless, more than usual and it took quite a while to get him calmed down. There was nothing apparent that was wrong. We slept off and on with continued interruptions from the nurses and as the early morning wore on he became more and more irritable and more and more difficult to console.
Will got to the hospital at around 9AM and took over with him so I could get some sleep on the fold out couch next to the bed. Here is his account of the rest of the day up until now:
Evan did not want any part of his 9AM feeding that Sarah had been trying to give him in a bottle since about 8:30AM when he woke up crying so I setup the feeding tube and took over rocking chair duties from Sarah. He was extremely fussy, much more than normal. No matter what I did he was not calming down which is pretty unusual for him, he’s normally so easily consoled. The small grunts on every breath turned into full blown screaming and crying that lasted for quite some time. The nurse practitioner was called in as well as the current attending doctor on the floor who just also happens to be one of the electrophysiologist’s, Dr. Martin LaPage. They wanted a quick chest x-ray to check for fluids around his heart and an echo to look at his heart function. While they were waiting for people to show up they ran a blood gas and that’s when all hell broke loose, there must have been 8 people standing around his bed. His lactate was at 20 (should be 0.6-1.5) and his pH was down to 7.0 down from 7.40. This was pretty alarming to the doctors and they busted ass back to the ICU. Evan was put back on the ventilator and all the lines that he just got out were put back in so they would have access for medications. They stabilized him pretty quickly with medications and he’s comfortable. They have ordered/performed/planned several tests. They took saliva and urine samples for more cultures. Three x-rays. And as I type they are doing a very extensive fetal echocardiogram. Three people have been at the helm of the echo for the last 45 minutes or so looking at everything. Doctors from pediatric surgery came down and examined him as well. Given the problems that he’s had with feedings and and the susceptibility of these kids they are thinking that it might be Necrotizing enterocolitis(NEC). This is not good… this has been a huge fear of ours. The little girl that I mentioned in my previous post, Eva, she has several bouts of this. We’re not coming home this week and if it turns out to be something as serious as NEC then we won’t be home for quite some time. I’m being kicked out of the ICU because they are bringing another patient back, so I am going to stop it here… i’ll keep posting as we hear more. Keep the sweet little boy in your thoughts and prayers.
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.
This morning Evan had a chest x-ray and everything looks great. He still has a wet-sounding cough occasionally but it must be residual congestion and is not indicative of any illness. Good news.
Evan also had another EKG and visit from his electrophysiologist. They had originally turned his pacemaker down to 80, but Evan was slightly below that so they turned it down to 70. Since then he has been pacing on his own. The docs want to collect 24 hours of his own pacing and they will evaluate the data on Thursday and make a final decision about the pacemaker.
It was put to us that Evan is in a gray area when it comes to the pacemaker. With his anatomy, he will need one. And with a low heartrate, he will need one. The question is when. He appears to be tolerating the low rate well. He does sleep a lot and we aren’t sure if that is because he is a newborn or because of his heart. He also has feeding issues still but again it might just be due to everything he has been through and not because of his heart. The question is – although his heartrate is low, is it steady and stable enough to delay installing a pacemaker until his 2nd surgery? There are risks and benefits to both situations. If they decide to put it in now, the same incision on his chest will have to be opened as well as a new one on his belly. He’ll have to go back on the ventilator, stay at least overnight in the ICU, and then we would have to work on his feedings all over again. If there is room, he could have the surgery on Friday, otherwise have it on Monday. I would guess we’d be here through the end of next week.
If they decide to hold off, we can essentially leave. It is the only thing holding us here. He doesn’t eat well so we need to learn how to take care of his NG tube. I installed the one he is using now and it did stink to have him cry so much but it really wasn’t that big of a deal. We can work on his feedings at home just as well (or better) than at the hospital. We would just need to watch him more carefully and they would teach us those signs. All he needs is his “little boy” procedure and we could go. Holy cow. They would make sure we are well educated before going home.
Evan is also no longer considered to be in complete heart block (3rd degree heart block). They said he is more into a 2nd degree heart block with his atrium conduction followed by the ventricles, but that there is a pattern of a growing delay between those two events. I checked it out and it sounds like Type 1 (Mobitz I/Wenckebach). Here is another source. When we were discussing his condition the nurse was watching his ECG and noticed that Evan had 4 normal heart beats in a row. So maybe he will be ok after all. That’s why they are going to look at the past 24 hours worth of data and also why they get paid the big bucks to make decisions like these.
I understand better now where the debate was and why they wanted us to wait so long. I don’t really know how to feel or what to think; I would just be nervous without one but the thought of him not having to undergo another procedure at this point is very appealing. Just the thought of being able to have a cordless baby makes me giddy with excitement.
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 continues to make steady progress and has been showing signs that his body is turning a corner, giving the doctors a lot of optimism in his recovery.
– He is continuing to be weaned from various blood pressure medications. The nurses continued to dial down his epinephrine dosing to reach the level his doctors wanted and Evan responded very well.
– His lungs still sound a little crackly but he has been initiating his own breaths while still on the ventilator. Per his medical team, his vent was initially set to a “volume” setting and they typically don’t use this setting so it was giving him a little more help than usual. But today they were able to change from the “volume” setting to whatever their typical setting is and they are also able to wean him down from that setting as well. So lots of progress on the vent! Overnight, they are going to attempt to run some breathing sprints, where they turn the vent down so Evan would essentially be breathing on his own but with the tubing in place. They sprint for about an hour, give the patient time to rest, and repeat it a couple more times. They just want to make sure that when they take someone off the vent the person will not have to go back on it. Even if he breaths on his own, they will leave the tubing in place due to his still high fluid volumes.
– Evan gained about 2 lbs after surgery and I would say most of that was fluid retention. They have been giving him Lasix through his broviac catheter and they added another diuretic to the mix to speed up the process. Boy did it work. He lost about a half-pound of fluid in a few hours. He even blew out his diaper a couple times, much to the annoyances of his nurses. Getting rid of the extra fluid around his chest and belly is a big step toward being able to remove the vent and being transferred out of the PCTU.
– Evan is still suffering from complete heart block. I don’t know if it is a matter of still being weaned by other things or giving his body more time to heal as to whether or not he will be able to shake this. It is the most serious remaining complication he has and if not remedied he will need a pacemaker.
– Evan started to receive some IV nutrition today. Previously he was just recuperating and getting nutrition is a good sign. Next he will move onto using his feeding tube, then the bottle, and hopefully back to breastfeeding. One step at a time tho.
Short and sweet – We just got briefed on Evan’s progress and so far everything is looking great! Big boy is doing awesome and continues to kick ass in the OR!
Dr. Hirsch is now working on installing the BT shunt that will connect the subclavian artery to his pulmonary atery. She is also going to install an IV that will lead directly to his heart to improve administration of medications as well as monitor his blood pressure continuously. It will stick out of his skin but will be better for him after the surgery. She has already completed the Damus-Kaye-Stansel (DKS) procedure, which combines his pulmonary artery and aorta. She also whittled away at his atrial septal defect (ASD) to make sure it is sufficiently large that it will not close on its own. She has also tied off his patent ductus arteriosus (PDA) because it is not needed for blood flow to the lungs, now that he has a shunt.
When the anesthesiologist was carrying Evan away and Will and I started crying she said, “I know… I have your heart in my arms. I promise we will take good care of him.” I have no doubt they are and that he will recover beautifully. Everyone here is awesome and we are so fortunate to have such a facility close to home. This is the first step to going home and hopefully that is only a couple weeks away. 🙂
Evan! Your room is finally done! I think we are just about as prepared as we will ever be. It took some serious organizing but everything has come together nicely. It is hard to imagine just how much a little baby has until you start to put it all away. First there are all of the extraordinarily generous gifts we have received. Then there are the cases where you are out shopping and pick something up “just because” or maybe it was a good deal. Not to mention all of the Mom-2-Mom and garage sales… All of that piles up and man are we set for a while. I’m not sure how many more clothes we can even fit in the closet. It almost looks as if the entire Jungle 1-2-3 collection exploded in his room but then I took a gander at this picture and realized that indeed we are missing some items but that will be juuuuust fine.
The colors in the photos are a little deceiving. It is much more on the softer than brighter side. On Evan’s crib, we have a mobile, sleep sheep, and musical light thingy. Poor guy will be instantly overstimulated. Also, because one should not use bumpers in the crib anymore, we got the idea from friends to still display them by attaching them to the outside of the crib. And because one should not use a quilt in the crib anymore, we just attached it to the wall so it can still be on display. Why do they put all this stuff together as a package if it is bad for baby?
Ahh well who cares. We love how it turned out and can’t wait to show it off to Evan, whenever he decides to make his entrance… which doesn’t look like anytime soon. Anyone care to guess his birthday? 😀 YAY!
I enjoy photography as a hobby and with such a vast online community it is easy to follow along with some of my favorite photographers as I try to develop my own brand of style. One that I have followed for a while is Natalie Norton. I don’t know how I found her, but she is good. I’m not the best at keeping up with blogs and for a little while I hadn’t visited hers. Then one day I noticed her header had changed, “I am a wife a mom and a wedding and portrait photographer. I live on the north shore of Oahu, Hawaii with my wonderful husband and four crazy sons, one of whom lives in Heaven. Thanks for stopping by.”
Wait, lives in heaven? Holy…. What did I miss??? Her 4th son, named after her beloved but deceased brother, had died January 7, 2010. He was 2.5 months old. Her heartbreak and pain were all over her website and postings, completely palpable. I never knew her but could not help but weep for all her pain. Her son died of Whooping Cough (aka Pertussis, caused by the bacteria Bordetella pertussis). They thought he just had a cough and went to the hospital for fluids, fully expecting to be discharged that day. They left the hospital with empty arms; the illness took his little body quickly. It is likely that Natalie gave her son the disease.
We were all probably vaccinated as children with the DPT, DTaP, or Tdap vaccine (which also protects against diphtheria and tetanus). The vaccine protects you for 5-10 years. Adults need boosters. If an adult has a Pertussis infection, it will likely be mild and present itself as a simple cough or bronchitis. But for babies it is extraordinarily deadly (92% of pertussis deaths is in infants younger than 4 months of age). Having babies vaccinated certainly helps, but her son was just too young to have had the full rounds of vaccinations necessary to give him full protection.
She has many more entries about this tragedy on her old blog. It is tremendously sad. But, she and her husband are committed to being transparent with the grieving process to help others as well as themselves. They have joined the Sounds of Pertussis campaign. It is aimed at educating adults on the importance of getting their pertussis booster and curb the growing incidence of this highly contagious but preventable disease.
If you want to visit Evan or any other infant, I want you to be protected. I’ll get my booster after giving birth. Dad will get his shortly. Not only do we need to give our son every advantage, but as adults we should be on top of these easy things for all babies. Healthy babies get sick too. Visit Sounds of Pertussis or do your own research. But please protect yourself and the little ones out there.
