Sorry that it’s been several days without an update… I know you won’t believe it but we’ve been pretty busy. This having a kid thing is pretty time consuming. Who knew?
Let’s see… Evan sleeps really well. So far the nights have been pretty good, he’s been sleeping for 6+ hours at night but we have to feed him in between so we’ve been putting it down his NG tube while he sleeps (2AM feeding). The tube is actually pretty handy. I mean, of course I want it off of his face, but it has it’s advantages. 1) he always takes his entire feed whether he’s awake or not 2) having a problem getting him to burp? nope, you can syringe excess gas right out of his stomach, 3)wonder how well he’s digesting his food, you can pull up what’s left, if anything before a feed to see what’s left from the prior feed, 4) doesn’t like the taste or doesn’t want to take oral medicine? (see video), just put it down the tube.
Follow up care for Evan will be handled by doctors here in Kalamazoo. Evan’s first appointment with the pediatrician was Saturday morning. It was very basic, they just did the normal measurements, weight, listen to lungs, and heart and we filled out a ton of paperwork. The doctor admitted that she was late because she was reading all of the doctor’s notes from U of M. Uh ya…lot’s to read. We have another appointment in a couple weeks. Additionally, we have a cardiologist here in Kalamazoo and U of M set us up with several visits with a home care nurse as well. Her first visit was Sunday morning. The home care nurse comes every couple weeks to check on Evan’s progress. I’m looking forward to seeing the cardiologist, it was her that correctly diagnosed Evan and got the ball rolling way back in March. Look at him now.
Evan got his first real bath tonight. We’ve still got to get a countertop tub for him, but tonight we put him in the bathtub with a baby bath sponge thing. Turning the shower down to a trickle he really seemed to like the whole thing. He’s such a good baby.
We have two small dogs, Molly and Maggie. While we were in Ann Arbor various friends watched them for us and we’re very grateful. The dogs came back to the house Friday afternoon and have been great around Evan. They leave him alone and surprisingly do not seem to be interested in him at all. We’ve managed to coax them into smelling him but they really don’t seem to care.
Here are a couple videos from the past couple days and also some photos.
This is the first time that Evan really found his thumb and latched onto it. We put him on his belly for tummy time and he was not real happy about it but once he found his thumb it was just fine.
It’s a very surreal feeling, being back in general care. We were here once before for a very short time. We thought then that we were on our way home, that was two weeks ago. Hopefully this time will be different. It feels different. All that stands in our way is one more trip to the OR to remove the Broviac catheter from his chest (scheduled for Wednesday morning), his little boy surgery, to continue doing well with feeding, and all the normal stuff that goes with discharging a baby. We’re being told Friday. Evan will go home on 4 medications. Lasix for fluid retention, captopril for heart function, phenobarbital to suppress any more seizures (this one we will only have for a month), and baby aspirin which he’ll take forever to help prevent clots. I’m not sure how long the Lasix will last. The captopril will last until the next surgery at the very least.
As strange as this may sound to most of you, it will be with very mixed emotions that we leave this place. The biggest thing is knowing what to do with and how to take care of Evan if something happens. Not having the safety net of doctors and nurses right there is a scary feeling. The hospital is doing a great job of preparing us and providing us with resources above and beyond our doctors in Kalamazoo. Additionally, over the past 40+ days and nights we have met many great people, both families and staff. Even though we have not grown really close to any one person it feels, at least to me, like we’re some kind of big family. Maybe family is too strong of a word but we’re all here for similar reasons and we all have the same goal, to get these kids healthy enough to go home with their families where they belong. Sarah and I spend much of the day on our computers looking at various things on the internet, one of these things is blogs of other families who have been in our position already or are walking this winding road with us. Sometimes this can be very difficult since not all stories are happy ones, but other times it is very uplifting and therapeutic to see how well kids do after having these surgeries. One such case is Aly Jean. Aly was born in June of 2009 and has had all three of the surgeries that Evan must have. Her last surgery, the Fontan, was performed here in Ann Arbor (as were all of her surgeries) in March 2011, she was in the hospital for a mere 8 days after that surgery and is now thriving like any two year old. Among a group of kids playing, you would never pick Aly out as being any different. She’s an inspiration to us and I can only hope that Evan does as well as this amazing little girl. You can follow along with Aly here.
There are several other families here that now hold a special place in our hearts as well. The Butcher’s are a family we met through Aly’s website and happen to be here at Mott right now as well. Their daughter Brittany (13 years old) had a heart transplant in late 2008 and her body is now rejecting it. For the past several days she’s been sedated and paralyzed to let her body recover stress free. She’s on about 20 medications, a ventilator, and her blood is being removed, ‘washed,’ and put back in her body. This is called plasmapheresis and essentially strips her immune system to zero in order to stop the body from attacking the heart. Mia Wilson is another miracle in the making. Her and her family (parents and 3 sisters from Akron, Ohio) have been here for nearly 6 months and unfortunately little Mia still has a long way to go. Before she was born her parents were told that she wasn’t going to make it, but 4 days after birth she was still holding her own. She was flown to Mott Children’s hospital where the amazing staff here has helped with her heart problems, a stroke, bouts with severe hypoglycemia, hyperbilirubin, hepatic insufficiency and multiple stomach and bowel problems. Mia’s website is http://www.miasbigheart.com/ and I highly recommend watching the 13 minute video. Please keep these and all CHD families in your thoughts and prayers. Congenital heart defects are the #1 cause of death among all birth related defects. Nearly twice as many deaths occur from CHD than all childhood cancers combined.
A group called Metals4Mettle came by today and gave Evan a medal from the Detroit Marathon. They had dozens to choose from but I chose this one because it’s close to home and looks very cool. These metals are donated by finishers of marathons all over the world and given to children and adults that are “fighting debilitating illness who might not be able to run a race, but are in a race of their own just to continue to live their life.”
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.
It has been seven days since Evan’s cardiac episode (NEC scare) and the surgeons are slowly starting to feed the little guy again. This morning they started him out at 3 mL per hour for 24 hours. It’s being pumped directly into his stomach through an NG tube continuously. If there are no bad signs by tomorrow morning then they will slowly start increasing his feeds back up to the point where he was. Tomorrow they will increase the continuous feed by 3 mL per hour every hour until he’s up to 22 mL per hour. Once he’s there they will stop the slow continuous feed and him on a more normal ‘all at once’ type dose, (this is called a bolus dose) of 22 mL. The following day 44 mL every 2 hours, the day after that 65 mL every 3 hours. This will put him back up to what he was eating before. Once he’s okay with that then they will start increasing the calories of the breast milk from 20 calories per ounce to 22 calories, and then to 24 calories. If you’ve been doing the math that’s about another week of us being here.
The nurse came in to give him blood today, this was news to us. She said his hematocrit (the percentage of red blood cells in blood) was low. We’re not sure why this happens, I think it’s just due to blood loss during surgery and such. We’ll confirm with the doctors when we see them next. It was not dangerously low by any means and in an adult they likely would not have done anything but they have found that in infants it’s best to have them at the high end of the normal range after surgery.
Evan is still on Milrinone for cardiac function and we’ll likely go home on a similar oral drug called Captopril. Until his feeds are back up he’s also still on IV nutrition consisting of TPN and lipids (fat emulsion). With food back in his stomach, he’s getting Reglan to help digestion and of course he’s still on Lasix to get rid of extra fluids. As far as tubes and wires, he had the NG tube put back in his nose this morning, a catheter in his leg for blood pressure monitoring and blood draws (which may come out tomorrow!), the dual lumen intracardiac Broviac catheter going through his chest and into his heart for medication, nutrition, etc, the pulse oximeter (red LED thing), and the 4 sticky pads on his chest to measure breathing and pulse.
Students are starting to show up here in Ann Arbor for the fall term. The streets are getting pretty busy. Get me out of here!
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.
Evan has been doing so well, we could not be happier about his progress. He’s gained about 6 ounces since birth and boy does he eat. Sarah’s milk came in and she’s been a machine. I checked the refrigerator in the ICU tonight before we left and there was enough in there for his next 5-6 feedings. She was very excited about it and so am I, much better for him than formula.
The doctors are watching his intake and output very closely to make sure he’s getting the right amount of calories. We actually weigh each diaper after a changing and I can tell you that a Pampers size 1 diaper has a tare weight of 20 grams. His heaviest diaper, was over 120 grams! Guess that’s what happens when they give you meds to make you urinate. They regularly increase his total calories and he’s been taking it in stride. He’s up to feeding every 3 hours and taking 67mL (2 1/4 ounces). He takes the first 3/4 of it really, really fast and then he wants to take a nap and we have to coax him to eat the rest by bugging him. 🙂
Tomorrow is our last day with him before the surgery. He’ll be fine, I know he will, but it’s really hard to think about what is going to happen to him without completely losing it. Despite everything that we’ve done to learn about and prepare for this, it’s still really, really hard. We’re having him blessed tomorrow afternoon and several family members will be there for it. Thursday morning they will wheel him down to a waiting area right outside the OR at about 8am. Sarah and I can be with him in that room right up until they wheel him into the OR. Surgery starts at about 8:30am and will last a 3-4 hours. We’ll go on a tour of the cardiac ICU and chew on our nails in the waiting room until he’s out. I’ve seen many pictures of other babies after they come out of the surgery, it’s not pretty and it’s going to be heart wrenching. We don’t know what life is going to be like for him immediately after the surgery, supposed to meet with the surgeon tomorrow and we’ll find out. How long will he be sedated? How long will he be on a ventilator, feeding tube, catheter, etc? What should we expect in general….???
Enough of daddy being a downer…. here’s some pictures and video of the most handsome baby you’ve ever seen.
OK, OK… I know daddy is mean and should let the little guy get his rest, but he’s sooooo cute when he’smoving around I had to mess with him a little bit. (I removed the audio in this one, the nurses were talking in the background and ruined it, but the video is still great) Do you have your tickets? from William Wood on Vimeo.
So I am sitting in the chair feeding the little fella and I sit him up to burp him and what do find? Evan has the same issue as daddy, his pants never seem to cover everything they are supposed to. Evan is just like daddy. from William Wood on Vimeo.
Evan is officially one and a half days old. He’s been doing what I imagine most babies do for the first few days, sleep. His blood sugar was bouncing all over the place but that has stabilized. We’re trying to get him to eat on his own so that he does not need the feeding tube but it’s proving difficult with the people in the NICU shoveling 30mL of food into him every 3hrs like it’s Thanksgiving dinner, it’s no wonder that he’s not hungry. The surgery is scheduled for next Thursday, until then he’ll be monitored in the NICU. Sarah has been discharged from the hospital but has one more night in a ‘nesting room.’ After that we will go back to the hotel here in Ann Arbor at least in theory. I doubt we’ll spend much time there, we just won’t have a room in the hospital.
Here are several pictures from the last couple days…
waiting to be admitted…
Waiting to be admitted…
Can you feel the excitement?
In the OR about to have a baby!
Happy mom to be.
Sarah and her big sis Kate in the OR.
Evan’s echo-cardiogram underway
Well done mom!
5 fingers and toes…. check.
Evan get’s his first bath.
He’s been having a little trouble eating, so he has a feeding tube.
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!
This is normal right? I mean he’s not going to spend much time in the nursery in the beginning anyway right? I guess my task between now and next Thursday is to clean this up mess. Orrrrrrr… Mom will be here next week and will be looking for something to do, hmmm. 😉
Mom and Evan are in the home stretch now, we’ve got just over a week to go! We have worked out most of the logistics for the birth, at least the ones that we can control, the rest is up to Evan and when he decides that he wants to make his debut.
The appointment today was very routine and barely worth the drive to Ann Arbor, but that’s ok. They asked how Sarah was feeling, asked if she was experiencing any signs of labor such as contractions, fluids, etc. Nothing to report there. Then the doctor says, “ok, we will scheduled your induction for July 18th.” Huh? This is the first we have heard about being induced. We put the brakes on that… We want to let it be as natural as possible, the longer he stays in there the bigger and stronger he’ll be for the surgery. We informed her that we will be moving to Ann Arbor next week to wait it out and don’t want to induce until the following week if nothing has happened. We’ve talked about this with them before but I guess when you talk to a different OB every time the wires can get crossed. She had no issues with our plan.
We talked about what to do if she does start having contractions before we get ‘moved’ to Ann Arbor and ran through a few scenarios…
Call the U of M Birth Center Triage if we have any questions 24/7 (speed dial added).
If her water breaks or she starts to have any bleeding then we go directly to the nearest hospital.
If she starts having contractions and they’re regular and strong we can go to the nearest hospital, if when we get there and they check her out, she’s not dilated very much then the best bet is to get back in the car and head to Ann Arbor.
If contractions get to be about 8 minutes apart, strong, 1 minute in length, and consistent for an hour then we would head to Ann Arbor.
I don’t suspect that we’ll need to do any of these, but we’ve got to be thinking about them just in case.
One concern to us is the possibility of Sarah needing a c-section so we talked about that also. In the event of a c-section Evan would need to be moved to Ann Arbor and mom would be stuck in Kalamazoo until she’s been released from ‘major surgery.’ What scenarios would necessitate a c-section? We talked about a few of them and the doctor did not express any concern that a c-section would be needed. <fingers crossed>
They listened to Evan’s heartbeat and sent us on our way. Drive time 3.5 hours, time in waiting room/exam room waiting to be seen 1.0 hours, actual appointment 20 minutes. 🙂 <shrug> oh well, lol.
We will move to Ann Arbor next week, have 2 appointments in Ann Arbor starting the following week and if Evan has not come by July 25th then they will begin the induction process. They prefer to start the induction early in the week with heart patients so that it’s not happening over the weekend when the hospital and especially the pediatric unit is not at full staff. Good call!
Let’s see… Evan sleeps really well. So far the nights have been pretty good, he’s been sleeping for 6+ hours at night but we have to feed him in between so we’ve been putting it down his NG tube while he sleeps (2AM feeding). The tube is actually pretty handy. I mean, of course I want it off of his face, but it has it’s advantages. 1) he always takes his entire feed whether he’s awake or not 2) having a problem getting him to burp? nope, you can syringe excess gas right out of his stomach, 3)wonder how well he’s digesting his food, you can pull up what’s left, if anything before a feed to see what’s left from the prior feed, 4) doesn’t like the taste or doesn’t want to take oral medicine? (see video), just put it down the tube.
Follow up care for Evan will be handled by doctors here in Kalamazoo. Evan’s first appointment with the pediatrician was Saturday morning. It was very basic, they just did the normal measurements, weight, listen to lungs, and heart and we filled out a ton of paperwork. The doctor admitted that she was late because she was reading all of the doctor’s notes from U of M. Uh ya…lot’s to read. We have another appointment in a couple weeks. Additionally, we have a cardiologist here in Kalamazoo and U of M set us up with several visits with a home care nurse as well. Her first visit was Sunday morning. The home care nurse comes every couple weeks to check on Evan’s progress. I’m looking forward to seeing the cardiologist, it was her that correctly diagnosed Evan and got the ball rolling way back in March. Look at him now.
