“Growing like a weed”, an applicable phrase to Mr. Luke these past few months. As I write this, he is four months and 24 days old. Months three and four brought more breweries, the zoo, and lot’s of time at home! Check it out:
Since we last wrote back on July 13, 2020, Luke has come a long way, he now:
Rolls frequently and vigorously, literally anytime you put him on the ground;
Has developed an insatiable curiosity. Constant looking around anytime we move to a different room or place;
Has become a picky eater, anything other than Mom’s breast milk at the perfect temperature is unacceptable;
Smiles at himself in the mirror;
Smiles at Mom and Dad frequently;
Has become ticklish;
Is trying extremely hard to crawl but still can’t figure out how to get his tummy up off the floor;
IS STANDING AGAINST OBJECTS WITHOUT ASSITANCE!!! Mom and Dad are terrorized by thought he may become mobile soon;
Is learning to babble more and yell; and
Is still not a great night sleeper (up every 2-4 hours).
It hasn’t been without it’s bumps in the road though. If you don’t know, Luke has MCADD, a metabolic disorder that makes him unable to breakdown some types of fat for energy. More info in this blog post if you’re interested, but all you really need to know is Luke can’t fast for more than 4-6 hours because his body can’t effectively utilize his fat stores to keep his organs supplied with energy.
The Bump in the Road
I was at work in the afternoon last Thursday (October 1) when I got a string of texts from Kristin. Luke was throwing up in his car seat while she was in the drive-through.
Babies do spit up frequently and sometimes it’s hard to tell if he’s actually sick or just having a lot of spit up. I pulled up our spreadsheet tracking how much and when Luke has eaten. His morning wasn’t bad, but it also wasn’t great. He had two smaller feeding followed by one large feed. Kristin guessed he spit up most if not all of his last feed. Looking as his chart that would mean between 4AM and 1230PM he’d had only 140mL’s of milk (a little over four ounces). For some perspective, he usually eats 800mL-1000mL a day so only 140mL at 1230PM was worrisome.
Kristin and I agreed she’d drive home to try and feed him. If he could get a good feed in to replace what he vomited, we’d probably be okay. Sitting at my desk, I decided I should call our Nurse Practitioner on Luke’s metabolic team at the University of Minnesota Masonic Children’s. Luckily, she happened to be at her desk and answered right away. It’s a story for another time but our NP is excellent, we are extremely happy to have her on Luke’s care team.
I explained what was going on, how Luke had reduced oral intake and had been vomiting. A bad mix when you can’t breakdown fats for energy. While still on the phone discussing it, I poked my head into my manager’s office and told him something was going on with my kid and I’m headed home. After conferencing Kristin in to get more details, we made the decision to take him to the Children’s Emergency Department at U of M Masonic. By that time I was already on the freeway and about 15 minutes from home. I told Kristin to get him ready and we’d go together.
When I got home his appearance alone was striking, he was completely pale. Kristin said he wouldn’t eat, he’d had diarrhea, more vomiting, and turned pale all in the last 15 minutes. While this might sound somewhat innocuous for a normal kid, for Luke it can be deadly. Once his body runs out of food, without being able to generate ketones from breaking down fat, he’ll use glucose to fuel himself. Eventually he’ll deplete is glucose level to dangerously low levels. This can lead to seizures, coma, and eventually death.
Arriving at the ER we were both able to go in with Luke, unlike last time when only one of us was allowed in due to COVID. Admission was quick, the team at Masonic is familiar with MCADD even though it is fairly rare. After getting vitals they started him on Dextrose to supplement his body while he was unable to eat or keep anything down. After several hours we were admitted to the hospital on the same floor we’d been on back in May – 5th Floor Medical/Surgical.
I’ll spare you all the details of what being in the hospital with a kid is like as I think I covered the well in a previous blog post. We were there with Luke for three nights again. The first two days we were assigned to the Gastrointestinal team in addition to the Metabolic team. They tried to track down what may be causing his vomiting, in the end they settled on it being a viral illness. Once that was settled the goal became to support Luke with IV Dextrose until he stopped vomiting and returned to his normal amount of eating. This took us four days of staying in the hospital, Thursday through Sunday. It was tough but we made it through and were so happy to come home.
Our Metabolic team had prepared us that Luke would be prone to hospitalization while he was little if he got ill and lost his appetite, so I think we were mentally prepared for this to happen. Still, it jarred both Kristin and I to have to watch him be there instead of at home, and at only four months old. Hopefully, if there is a next time, we are even better prepared. Luke is back to his usual happy self and we are happy to be home.
For those of you that haven’t heard, we had a beautiful baby boy early on the morning of Wednesday, May 13. I’m going to do a separate blog post covering how amazing bringing a kid into the world is but I just need to get the below post off my chest even though it happened after the birth.
Friday – 5PM
“This is Kristin.”
I heard in the other room. We had just been discharged from Woodwinds Labor and Delivery unit and were still unpacking at home.
I walked towards the sound of her voice coming from baby Luke’s nursery. We almost collided as she was walking out to get me. It was Luke’s pediatrician. Friday after 5PM, that’s a little odd I thought. We had just been discharged from the labor and delivery unit at Woodwinds Hospital a few hours ago so I wasn’t expecting to hear from anyone so soon. Kristin sat down and put the phone on speaker. Luke’s doctor got to the point, his Minnesota Department of Health screening had come back with suspect levels related to a metabolic disorder called Medium-chain acyl-CoA dehydrogenase deficiency or MCADD. She explained that this was just a screening and didn’t mean he had the disorder but that further testing was needed as soon as possible to determine if he did. She asked us to go to the University of Minnesota Masonic Children’s Emergency Department to get labs done right now.
As we packed up the car and got Luke all ready to go, my mind couldn’t help but race. The feeling I got from the phone call was that this was out of an abundance of caution and we didn’t really have a reason to worry. Mostly I didn’t.
We got to the ER and only one parent was permitted to come in with Luke due to COVID. Kristin was still recovering from the birth so we decided I would go. I grabbed his little carrier and headed in, not what I pictured for our first Dad/son trip out of the house.
Our doctor had called ahead and we were brought back to an exam room and asked all the standard ER questions. It was tough being alone on day 1 with a newborn baby in the ER all by yourself. Frankly the tests were a nightmare. The nurses couldn’t find anywhere to draw blood so they spent what felt like an eternity tying to get a needle into a vein until they eventually just gave up and asked a lab tech to do it. The lab tech took some blood via an ankle prick and took some urine via a catheter. After three hours of mostly waiting, poking, and prodding we were back in the car.
Kristin and I chatted on the way home, we were both worried but still felt like it might have just been a fluke on the test. Kristin’s phone rang when we were about 10 minutes from home. My stomach jumped into my throat. She put it on speaker.
“Hi this is Tom from the emergency department at U of M Masonic. We just got some of Luke’s labs back. His blood sugar looks low and we need to retest it to see if it is still low.”
I spoke up, “We are 5 minutes from Woodwinds, should we go there to get it checked?”
“That sounds like a good option”
I took the next exit, the clock read 9PM. I could feel the anxiety rising inside me like an ocean tide. While waiting in the ER at Masonic, I had spent a fair amount of time reading about MCADD. It was an incurable genetic disorder and low blood sugar was a hallmark symptom. It was starting to feel less and less like his screening result was just a fluke.
Woodwinds knew we were coming and same as Masonic, Kristin was not allowed inside. I gave Kristin a hug and headed in. They tested his sugar right away.
“Still low, follow me”, the nurse said.
She led me back to an exam room where a Doctor stepped in and told me she had just talked to the Supervising Emergency Department Doctor at Masonic. They wanted Luke started on 10% Dextrose IV immediately to raise his blood sugar and then have us drive him back to Masonic.
A new challenge became clear immediately. Two emergency room nurses at a pediatric hospital couldn’t even find a place to draw blood for labs a few hours ago. All they do all day long is deal with pediatric patients and they couldn’t get it. How would Woodwinds, a hospital that doesn’t have a NICU and doesn’t specialize in pediatrics, get an IV in him?
They paged two nurses from the special care nursery upstairs and they got to work. Time ticked by as they poked place after place unable to get a needle in that worked. Eventually two different nurses came down to try and they wheeled in an ultrasound to help guide them. Since they had started my stress level had been rising steadily. 30 minutes had passed and I was pinned to the ceiling at this point. I couldn’t sit down, had a lump in my throat, and felt sick to my stomach. Masonic was 21 minutes away and as the clock pushed 45 minutes since they started trying I asked them to page the ER Doctor.
“This isn’t working, we could have been at Masonic where they specialize in caring for patients Luke’s age 20 minutes ago. At this point it’s seeming likely they might not ever get an IV in, is it time to cut our losses and get to Masonic?”
“Okay I’m going to call the ED at Masonic, I want their input and then we’ll make a decision. I’ll be right back.”
A few minutes later she returned.
“I just talked to the Masonic and they agree let’s get him to there. The transfer team is on their way right now should just be 10 or 15 minutes.”
“Transfer team? Does he need to go by ambulance?” I said.
“Yes, he’ll need to go via ambulance.”
I lost it. It felt like this whole thing was spiraling out of control.
“Does he need that? We want to do what you think is best but we can’t take him?
“I think an ambulance would be best”
I didn’t realize he was that bad. He needed to go by ambulance? Was he going to be okay? Were we going to lose our beautiful baby boy before he was even four days old? I called Kristin. She had ran home, packed me a bag and was waiting in the parking lot to take us to Masonic. I told her about the plans with the ambulance, we both broke down. Luke would be going on his first ambulance ride before he’s even spent a night at home.
The doctor returned. They had retested his blood sugar and it had gone up. She called Masonic with the news and they said we could bring him now as long as we didn’t stop anywhere. They were going to stop trying to place an IV and send us to Masonic. A tiny wave of relief came over me, we’d been drawing bad cards all night long and it felt like we just drew our first good one with his blood sugar going up.
The clock on the wall read 10:50PM, I got him all situated in his carrier and ran him out to the car. Kristin jumped in the back with him and I climbed in the drivers seat. There wasn’t much to say on the way over, we were both scared. It was hard to look at our little boy, who had no visual symptoms of anything, and think he had an incredibly rare incurable genetic disorder. We called both our parents. Neither of us could keep it together to explain what was going on so we took turns filling them in.
We got to Masonic and again had to part ways at the door. I kissed Kristin and she kissed Luke before heading in. Doing this alone made this whole thing so much harder. Kristin had to go sit alone at home all night wondering how her newborn kid was doing. I was alone at the hospital, watching Luke be poked and prodded and trying to keep Kristin updated.
We were lead again to an ER exam room, this time the charge nurse greeted me. She said she was sorry for what we had gone through so far and that Luke needed an IV and she had paged two NICU nurses to come down and place it. In the meantime she would try and place one herself but promised not to poke him unless she was confident it would work. She couldn’t get one but shortly two NICU nurses showed up who were able to get an IV placed in a matter of minutes. They took some blood for additional labs and put a urine bag on him before telling me to hop on the bed and taking us upstairs.
A nurse wheeled us down a long corridor to a bank of elevators. Despite being a hospital the area we were in had the feeling of a school after hours, mostly empty, mostly dark. The nurse pushed the button for the fifth floor. When they opened we were met with locked double doors with a sign saying “Medical/Surgical 5th South”. The nurse scanned his badge and wheeled us past room after room on the ward until wheeling us into a large private room with a medical crib in the middle.
Another nurse was standing in the room. She introduced herself as Karina and told us she was assigned to take care of Luke tonight. I set down Luke in the crib and she started what would be the first of a barrage of vitals and glucose checks that would occur around the clock.
A resident swung by our room. She basically had no info except that overnight we’d keep him on 10% dextrose and monitor his blood sugar every four hours. A metabolic specialist was overseeing our case and would contact us a some point tomorrow.
After we got settled in I laid down on the couch the nurse had put a sheet and pillow on. It was now around 2AM and it was the first time since 5PM that I’d really had a chance to take a breath. In 9 hours my entire life had changed. Just bringing our first kid home from the hospital we felt like we were on top of a mountain. Now I felt like we had been thrown off a mountain. I felt helpless laying there. I had no answers, no plan, no nothing. I tried to just focus on taking care of Luke and getting through the night.
Saturday – 7AM
I’m not sure you can really say I woke up the next morning. Between nurse checks, feedings, diaper changes, and processing what was going on I’m not sure I slept more than an hour or two. When I did decide to get up I was dismayed to find I was in the same reality I had gone to sleep in. It sounds cliche but it really did feel like a bad dream.
At this point the information we had about MCADD was almost all from the internet. The one doctor I had talked to so far didn’t know much about it and was just repeating a treatment plan she had gotten from the metabolic specialist overseeing our case. I’d made repeated requests to the staff to schedule a time to speak with the specialist but hadn’t heard anything yet.
A nurse that dropped by had mentioned while Kristin and I weren’t able to both be at the hospital, we could swap out as many times a day as we wanted. I called Kristin right away and asked if she’d like to come see him. I’d been sleeping on hospital couches since Monday night and could really use a few hours at home to shower and try and catch some sleep. She eagerly agreed and said she’d be there in two hours.
We swapped out and I was barely on the freeway and the nurse called me. The metabolic specialist was driving in to meet with us and would be there in 15 to 30 minutes. The doctor wanted us both there and forced security to make an exception and let us both speak with her in person.
Dr. Sarafoglou walked into the room and spoke with a confidence we had yet to hear out of anyone in any hospital yet. She said she made a trip to the hospital today specifically to meet with us because she wanted to reassure us. She explained, at a high level, MCADD is an incurable genetic metabolic disorder where the body has an inability to break down a certain type of fat into ketones. Without those ketones the body consumes glucose for energy instead, this can cause the persons blood sugar to drop continually until they become hypoglycemic. Hypoglycemia can cause seizures, loss of unconscious, brain damage, and eventually death if untreated. Fortunately, the fix for this is fairly simple. You just need to eat. For newborns that means eating every three hours. Once you hit three or four years old you can go 12 hours without eating and that usually stays your limit for life.
This disorder is extremely manageable she said. If you had to pick a metabolic disorder to have, MCADD is the one. Luke will have a normal life. He’ll play sports. He’ll run. He’ll play with other kids. He’ll do everything a normal kid will. Being parents of kid with MCADD will require two things of you. First, your threshold for calling the doctors office will need to be much lower. For example, being sick increases the bodies energy use and often makes people lose their appetite, that combination is bad news for people with MCADD. We would want you to call the metabolic on-call doctor and track his intake and temperature carefully. If necessary, you may need to come into the hospital to receive IV dextrose. Secondly, you’ll have to ensure he is regularly fed and doesn’t fast for any period of time greater than three hours until he gets a few months older.
She laid out a plan for discharge. This evening we would stop the IV dextrose that Luke was on. This would start a test where we would feed Luke every three hours while checking his blood sugar every four hours. If his blood sugar stayed above 70 throughout the night, the test would be considered passed. If he passed the test showing he could maintain his blood sugar on his own we would be discharged the next day.
We spent another half hour asking her questions. Things like how does this compare in terms of manageability to something like diabetes (MCADD is much easier to manage). One of the things that became clear at this moment was what different places Kristin and I were at in terms of processing this. As the doctor left, Kristin burst into tears but I was feeling much more optimistic. I remember looking over at Luke and thinking, we can do this.
As Kristin and I talked it became clear the doctor speaking with us really extinguished the hope she was holding on to that this was all a mistake and he actually didn’t have this. She was just now accepting our new reality. I found myself going through that the previous night. I had accepted the diagnosis and was just trying to deal with the prognosis. From what the doctor said our outlook looked fairly positive. Not being able to go through this together due to COVID had put us in different places, adding yet another complexity to everything that was going on.
I headed home to get some rest but couldn’t settle down. Oddly, I ended up mowing the lawn. Somehow a mundane task like that took the edge off. I did a few other things around the house, laid down to rest for a bit, showered, and then headed back to the hospital.
Saturday – 8PM
I pulled into the underground garage at the hospital and called Kristin. I was going to take the night shift with Luke again. She appeared from the elevator bank ten minutes later. We hugged, talked briefly and then parted ways with a quick kiss, not wanting to make the nurse watching Luke wait too long.
I walked into the room and was greeted by the nurse rocking Luke in her arms. The staff had been pretty damn amazing on this floor, they took care of us like family. I fed him, changed him, put him down, and settled in to my makeshift bed. I was optimistic, after hearing what the doctor said, we’d be out of here by the tomorrow. We had a plan and a baby with a manageable condition, even if it is rare and incurable. I spent the night waking up every two or three hours to feed and change him.
Sunday – 5AM
I jumped awake. The charge nurse Alex was standing over me with her hand on my shoulder. I abruptly sat up, startling her.
“Sorry! I just wanted to let you know Luke’s blood sugar just tested at 50.”
“Shit”, I said out loud. She told me they had paged the on-call doctor on the floor and they’d ordered his IV dextrose restarted. Basically, we had just gone back to square one and we weren’t going home tomorrow. I immediately felt defeated, the semblance of control I’d felt earlier after meeting with the doctor was gone. The uncertainty came rushing back. If he can’t manage is own blood sugar how can he leave the hospital?
My mind ticked, as I watched the nurse feed him 12 milliliters of formula. A recheck 45 minutes later showed his blood sugar at 93. The nurse called the doctor and I could hear her audible surprise over the phone. This only added to my confusion. Are swings that big in blood sugar even possible? I looked at the clock and it was almost six. I sent Kristin a message, not really say what else other than then he’d tested at 50 and was back on the IV.
Kristin was heading to the hospital for another swap out with me. We still didn’t have a new plan from the doctors. He was still on the IV dextrose. Same routine as before, she parked in what was becoming our usual parking spot in the underground hospital garage. I grabbed a nurse to watch Luke while I ran down.
Being at home allowed from some decompression but after a few hours you start to feel a ‘cabin fever’ type anxiety. Wondering what’s going on at the hospital. Wondering how my kid doing. Wondering that the plan was going to be.
Kristin called me sometime later and said the resident doctor had stopped by. The new plan was to start him on a nutritional supplement called L-carnitine three times a day. The metabolic team didn’t have the lab results back yet but suspected lack of this supplement in Luke’s body may have caused the big dip we saw last night. They were starting the supplement immediately and the plan was to repeat last nights test again, if he passed we’d be going home tomorrow.
I tried to get some sleep before I’d head back to the hospital for the night shift with Luke.
Monday – 1AM
Back at the hospital I was stirred awake by a commotion near Luke’s crib. Two nurses were hovering over him. After several minutes they were still there and I had seen the blood sugar meter but I almost didn’t want to ask, fearful of the answer.
“What was is blood sugar”, I blurted out.
“67”, our nurse Karina said.
Fuck fuck fuck I thought. Again we are back at square one, are we ever going to get out of this place. The nurse must have sensed my frustration.
“We just talked to the resident, they told us not to intervene and we are going to retest it shortly.”
“Do they think it could be a fluke?”, I said.
“They think it’s possible.”
I waited anxiously while they pricked his heel for the second test. The blood slowly traveled up the test strip to the machine. A countdown from 5 started. At zero the machine flashed blank and then read 83. The nurse and I looked up at each other. I could tell she wanted to assuage me but didn’t want to tell me something she didn’t know for sure. She called the resident. They were going to check it again in an hour and if it was still above 70 they weren’t going to consider the 67 reading an error. They hadn’t done anything to intervene and it had gone up on it’s own which doesn’t make any sense unless the reading was an error.
Monday – 8AM
Kristin had just called telling me she was pulling in the ramp. It sounded like we were going to get out of here today but we still planned on doing a parent swap so I could go home and freshen up just in case we had to stay another night.
Mid-afternoon came and Kristin called me to tell me we were going home! We had one final call with the metabolic doctor managing our case and got all our questions about managing a baby with MCADD at home. It really was fairly simple and boiled down to, feed him every three hours and call us if he gets sick or stops eating.
My mood was over the top driving back to the hospital. Kristin came down since she still couldn’t carry anything having given birth so recently. I packed everything up and got us the hell out of there.
Getting everyone in the car and all loaded up it felt good, to be a family again together.
It’s Thursday at 9PM and we are doing a lot better. I found a few blogs written by parents who have kids with MCADD. I decided to email one of them that hadn’t posted in several years to see if they would give us an update on how their kid was doing. Hearing parents talk about their older kid with MCADD felt like looking into our future. They sent me the below reply:
Congratulations on the birth of your son! Getting an MCADD diagnosis is so scary and unexpected. I’m glad that you found my blog and I hope that it offers you some optimism for the future. The first year is a lot. The feeding schedule is pretty demanding and you’ll find yourself quite sleep deprived, but know that it definitely gets easier as he grows. The feeding schedule will stretch out every couple months and will disappear completely by the time he’s a toddler. You’ll go from setting 4 alarms a night to setting none at all before you know it.
Our son is now 10 years old. He is healthy, smart, creative, funny, an amazing athlete and also compassionate beyond his years. He lives a very normal life and MCADD has never held him back from anything he wanted to do. In fact, the vast majority of people who know him have no idea that there’s anything different about him. Other than eating a hearty snack at bedtime (usually a yogurt and some granola) and taking a levocarnitine supplement, he eats, snacks and plays like most ordinary kids and doesn’t have any dietary or activity restrictions whatsoever. He played on a basketball team for the winter and there was one game where his team was shorthanded so he happily played the entire game. He sipped on Gatorade instead of water during the pauses in play and he had whatever snack the team parents passed out afterwards. When we got home, he went out and rode bikes with his friends for the rest of the afternoon until we called him in for dinner.
The only thing that’s a little different for our family is that we need to watch him really closely when he is sick with any illness that causes vomiting, diarrhea or loss of appetite. If he isn’t able to eat 2/3 of his normal intake, that tends to trigger a trip to the hospital where our metabolic doctor calls ahead to let them know we’re coming, he gets an immediate IV of 10% dextrose when he arrives and we hang out there watching movies until he can eat enough on his own again (usually overnight, but sometimes up to a couple days). Hospitalizations happen VERY infrequently as he has gotten older – maybe once every couple years and usually when there is a particularly nasty germ going around at school. Our older son usually weathers that same virus on the couch with a puke bucket and some pedialyte, but our MCADD kid needs the IV as a safety net to make sure he doesn’t get into anything dangerous like a metabolic crisis. MCADD is all about preventing a metabolic crisis and you do that by avoiding fasting.
Please don’t be heartbroken about the diagnosis. It takes some getting used to, but see if you can find a way to think about it less as a “disease/disorder/sickness” and more as “information” about how your son’s body works a little bit differently. That information is very powerful and has already saved his life. And, it will continue to save his life because you know how to keep him safe. The best part is that keeping him safe doesn’t require anything complicated. You really just need to make sure he’s eating regularly. MCADD doesn’t have to limit his life or yours in any way.
Congratulations again! Feel free to reach out anytime you have questions about “real life” with MCADD.
I probably read the email ten times. It really assured Kristin and I that Luke would lead a normal life with the exception of some extra snacks and Gatorade. We only have three nights under our belt but it already feels more manageable than we expected.
I know this has been a marathon of a post but it was much needed to get this all out. We are optimistic going forward and excited to watch little Luke grow!
I stared at the screen as it slowly spit out paper with lines bouncing up and down on a graph. A soft, but strong, heartbeat played from the machine.
“140” it read.
Hang in there kiddo, we are on the home stretch now.
To back up a little bit, last Wednesday we had our 38 week appointment. Kristin was showing a lot of signs favorable to labor during the checkup. After some discussion with our Doctor, we decided on an induction the following Monday. Kristin would be 39 weeks and 3 days then. It might sound a little odd that we are getting induced prior to our due date, but our Doctor encouraged us citing some research that inducing in week 39 was a good choice for both baby and Mom. Before being admitted to the hospital Kristin was required to get a COVID-19 test, she was negative! Our strict quarantine rules were finally paying off.
While the days had already been going by slowly, they moved at a glacial pace now that we had a date set. We spent Thursday and Friday doing some last minute cleaning around the house. Saturday and Sunday we enjoyed our last days with just the two of us, thinking about how different our life would be a week from now.
Last night I could tell Kristin was getting a little anxious for the task ahead so I decided to surprise her with a push present (a present to show your wife all the work of pregnancy is appreciated) a little early. Kristin always enjoyed playing our Nintendo Wii so I thought a Nintendo Switch with a copy of Animal Crossing and Mario Odyssey would be perfect! Unfortunately, with COVID closing down the factories that make Switch parts and everyone quarantining at home, switches were near impossible to find. Luckily the best man at my wedding, Tyler, came through and found one for me after weeks of searching. I was able to run and pick it up without Kristin ever being the wiser.
Time passed a little faster with the distraction of Kristin setting up her own Island in Animal Crossing.
Waking up today felt surreal. The morning went surprisingly quick between packing up and getting ready. Before I knew it we were on our way to the hospital for our 4PM check-in. We were greeted at the door with masks we had to don and told to make our way up to labor and delivery. A nurse greeted us at the elevator and led us to our room, they feel a bit like a hotel at Woodwinds. Fridge, shower, bath, TV, and thankfully for me a nice big couch to sleep on. Due to the COVID situation we are unable to leave our room for any reason and since I haven’t had a COVID test I have to wear a mask whenever staff is in the room. It seemed like a small price to pay when the possibility of me not being there at all was on the table last month.
Amy, our nurse was awesome. She ran us through a bunch of stuff and laid out the plan ahead. Tonight we will start Cytotec, a drug that isn’t intended to induce labor but will get your body ready for labor. Tomorrow morning we will likely start Pitcoin, which should induce labor. Kristin got changed into a gown, her fetal monitor hooked up, Cytotec started, and dinner delivered shortly after we arrived. On admission her blood pressure was fairly high, two subsequent readings were also high so our Doctor ordered some labs since that can be a symptom of preeclampsia. 45 minutes later we found out everything was fine and a fourth reading of her blood pressure showed it back in the normal range. A sigh of relief was audible from both of us. Thankfully they didn’t take my blood pressure, with how anxious I am they’d probably be admitting me.
That’s about all the excitement we’ve had thus far right now it’s 8:23PM and Kristin is resting while watching Harry Potter on the TV. I think we are both pretty anxious and excited for the journey ahead. One thing is for sure, I am ready to meet this baby.
It’s week 36, which means at the very longest we will be meeting Baby Simonet in five weeks. However, Kristin could wake me up at 3:00am tomorrow morning and we could meet the kiddo tomorrow. That uncertainty is very exciting, like Christmas except you’re not really sure when the presents, or in this case one big present, are going to show up.
I mentioned in my last post that I started a leave from my office last week and Kristin has been working from home since the middle of March. With all this extra time at home, and all the restaurants being closed, we’ve really started to get better at cooking
We weren’t bad before, or at least Kristin wasn’t. Previous to this I had focused on a few meals and got them down pat, just enough to lead a woman on to thinking I can cook. You can keep up the illusion of being a good cook for a few months with just that. Anyway, with all our free time we’ve both been working on getting a few more home cooked meals under our belt. Kristin made the above Beef and Broccoli this weekend and boy was it delicious.
Last week I attempted to make, for the first time in my life, chocolate chip cookies from scratch. Kristin swears up and down they were good, but they turned out more like biscuits than they did cookies. I misread the recipe I was following and instead of putting two cups of chocolate chips I puttwo tablespoons.I know what you’re thinking – how in the hell did he not realize that wasn’t enough chocolate chips? At the time it didn’t even occur to me, I just thought the person writing this recipe knows a hell of a lot more than I do. Additionally, I wasn’t aware how precise you need to be with the flour measurements, I definitely put in too much which resulted in some awfully dry cookies.
Ah, but it was time for redemption. Sunday night Kristin went upstairs for a bath and once I heard the bathroom door shut I whipped out cooking supplies and went to town. Later delivering some delicious moist cookies, with an appropriate number of chocolate chips, directly to the bath tub. A small victory for most people in the kitchen but I gotta take the baking wins when I get them.
We also found out that a 12 ounce can of Mich Golden works great to make pizza dough if you don’t have any yeast. Pizza on the grill, also an awesome idea if you like crispy grill-marked pizza crust.
Besides the cooking, this week brought one of many growth ultrasounds we’ve had to have. Kristin has marginal cord insertion and if you have no idea what that means you’re in good company because neither did I. Long story short the umbilical cord is supposed to attach to the placenta, where it gets all it’s blood and nutrients, in the center. If your cord is within an inch or two of the edge of the placenta, it’s considered a “marginal cord insertion.” This is completely fine, and extremely common, as long as it stays an inch or two away from the edge. Where you get into trouble is if, as the placenta grows, the cords insertion point goes over the edge which is much more rare. One of the symptoms of this is a sudden slow down in your baby’s growth. To make sure this isn’t happening we have more frequent ultrasounds to make sure our kiddo is right on schedule.
While this probably doesn’t sound great to you it’s really not a big deal. I know it sounds a little weird but I’ve honestly enjoyed it because we get to see Char way more often on these frequent ultrasound visits.
No, you didn’t misread that, I referred to our expectant kiddo as “Char”. Kristin and I are not finding out the gender and it always felt weird to refer to our kid as “it”. Early on we decided to just use him or her interchangeably. At week seven our kid got his first nickname. Kristin sent me the below picture from an app she had that gives her a weekly update on how the baby is developing. I immediately thought of the Pokemon, Charmander. Somehow that stuck and ever since week seven we’ve been referring to her as Char, a nickname I’m betting will stick long after birth.
I briefly touched on it my last post, but it’s hard not to talk about COVID-19. We’ve done everything we possibly can to ensure we’re both healthy when Char arrives. Basically we never leave the house except to go to Doctors appointments and on leisure drives. At this point if we catch it, we were always going to catch it and there’s nothing else we can do.
For a period of time, two major NYC hospital systems banned birth partners, leaving all mothers giving birth alone. It loomed as a reality Kristin and I might have to accept, and not a welcome one. Our biggest concern proceeding this news was accepting there likely wouldn’t be any family allowed at the hospital. That now seemed insignificant as we faced the possibility that I’d have to meet my first kid over video chat and Kristin would have to give birth alone. A week or two after these hospital chains announced this new policy, the Governor of New York signed an executive order requiring hospitals to allow at least one birth partner. This offered some relief as it seemed likely other states would take similar measures if hospitals tried to enact strict no birth partner policies. All of the sudden not having our families able to be at the hospital during the birth didn’t seem that bad. It’s a bummer but at this point we’ll be happy as long as Kristin and I can be together through the whole thing and we bring a healthy baby home.
We’ve yet to talk to our pediatrician about how we should deal with visitors once we bring Char home but that’s definitely floating in the back of our minds. The Minnesota stay-at-home order is set to expire on May 4th, although it seems likely it’ll get extended, I would assume our pediatrician will tell us to avoid visitors for some period of time. Hopefully our parents can meet their new grandchild fairly soon. I’m not sure how long I’ll be able to last not showing her (or him) off to every single person I meet.
I’ve been slowly writing this blog post over the course of the week, it’s now 7:55PM on Wednesday the 23rd. Barring labor starting in the next 28 hours, we are going to make it to week 37, but you never know…
Just a forewarning, continue reading this blog at your own risk. Since I won’t likely be able to show off my new kiddo in person to everyone, this blog will basically be all baby pictures and videos going forward once Char arrives.
Faint? I thought. What the hell does that mean? How can it be faint? This isn’t horseshoes, you’re either pregnant or you’re not. Almost isn’t an option.
“I don’t know maybe I’m just imagining it, the line is barely there. It’s early I’ll have to test again when I get home.”
It was the first week of September and Kristin was out of town for work. She wouldn’t be back for a few days and I dreaded the anticipation. My thoughts raced as I tried to fall asleep, we’d been trying to get pregnant for a few months. The thought that it might finally be happening had me feeling a mix of anxiety and excitement as I drifted off.
The next few days were a blur. I tried not to get my hopes up and neither did Kristin, so we barely mentioned it when we talked on the phone. I anxiously awaited her arrival. To my surprise she didn’t mention it at all when she walked in the door.
As I carried her bags up to the bedroom, Kristin sped into the bathroom without saying a word. I was instantly suspicious. I flopped down on the bed, staring intently at the bathroom door, as if I stared hard enough I’d be able to see if she was taking a test or not. Seconds ticked by at a glacial pace. After what felt like hours she emerged. I scanned her face looking for any clue but found none.
“What?” she said unconvincingly.
“Well, did you take a test?!”
I’ll be honest. I’ve tried but I can’t remember exactly what she said next. I’m not sure if I just didn’t write this soon enough or if I was so overwhelmed with emotion the words weren’t important to my memory.
“Ahhhhh, yes!!!” I exclaimed as she held up the test.
I didn’t even look at it. I picked her up in a bear hug, pulling her on to the bed. I was overcome with joy, I felt like I had just won an Olympic gold medal!
I finally looked at the test and saw a faint, but undeniable, line. We were pregnant. My brain flooded with thoughts. Kristin had exhaustively read about pregnancy. She regularly transferred this knowledge to me over the past few months. My mind flashed back to her filling me in on miscarriage rates and how they steadily decrease from the day of conception. I tried to temper my excitement with some caution but it felt like trying to put out a large house fire with an eyedropper.
We were going to have a baby. Nine months suddenly felt like a much shorter period of time.
I stared at the test and wondered whether I should call Matt or wait for a more definite answer. What if I get his hopes up? Would I be ruining the surprise? I was on a work trip in Ohio for one more night so wasn’t sure if I could keep it all to myself for that long.
After a few minutes, I called Matt and told him there may be a line but it was hard to tell. “Oh okay.” Was all I can remember him saying. I wasn’t overly excited because I didn’t want to get my hopes up. I assumed he felt the same way. After talking about the test briefly, I told him I could take another after I got home tomorrow. We didn’t bring it up again for fear that we would jynx it.
After my plane landed in Minneapolis the next day around 5:00 p.m., I had a plan. I drove straight to Target to pick up more tests and a little surprise gift for Matt in case it all turned out how we hoped. I walked up and down the aisles in the baby section looking for something gender neutral but adorable for a newborn. I settled on a back of onesies with a “bear” theme – the first onesie said “baby bear.” I frantically drove home.
When I got home, Matt met me at the door. We had not said anything about the possibility of a baby since I called him the night before. We still said nothing. He helped me inside with my suitcase. I walked upstairs quickly, but calmly, to go confirm whether a little Baby Simonet was on the way.
After I took the test, I set it down and occupied myself with my phone for a few minutes in the bathroom. I had a lot of thoughts. Okay, if it’s positive, I can give Matt the onesie? Or do I give him the test? Do I bring it up right away?
When I looked over at the test after a few minutes, the line was unmistakable. I took a deep breath and opened the door to go downstairs and tell Matt. To my surprise, he was sitting on the bed. I had not heard him come upstairs, and part of me thought maybe he forgot about the whole conversation we had the night before.
“Well?” he said anticipatorily.
“Did you take a test?”
I didn’t quite have the words and knew I could not contain my excitement for another second. I walked back into the bathroom, grabbed the “baby bear” onesie, and handed it to Matt. I can’t remember exactly what he said, but I know we shared a big hug. Then Matt walked into the bathroom and looked at the test himself. I followed just to make sure I hadn’t made the whole thing up. Turns out the line was real!
The next few weeks were filled with a strange mix of feelings. May 15th emerged as our official due date. We joined an online group with around 2,000 other people that are due the same month as us. It seemed like every few days someone was posting about how they were “out” meaning they miscarried and were leaving the group. This tempered my excitement often, and I think Kristin’s just as much. Every day that passes you feel a little more excitement and a little less nervous.
Kristin and I had decided not to tell a soul until our chances of miscarrying went down. Keeping the secret is nearly impossible. At times it feels like it’s going to explode out of you. A week after we had found out Kristin spilled the beans while guzzling Root Beer’s (which apparently do not look like real beer) at my ten year high school reunion when a friend, who knew we were trying, called her out. She stumbled on her answer and the friend knew. We swore her to absolute secrecy, we were not ready for the world to know. After that we knew we had to up our game, we pulled out all the stops. I was filling beer cans with water, swapping drinks on the fly with Kristin to make it look like she was drinking the wine she ordered, and anything else we could think of to throw people off the trail.
About a month later we decided it was time to tell our parents. My mother seemed to have been suspicious for quite sometime, so I really felt the need to throw her off the trail. Both Phil and Sue helped us a ton moving into our new house in August, so we said we’d gotten them a gift and would come over that night to have a cocktail and give them the gift. Kristin and I went and picked up a baby blanket and two mugs that said, “recently promoted to grandma/grandpa”.
Once we got to their house I ran out to the garage to grab us some drinks. I opened a hard seltzer and dumped it out, filling the can with water. We gave them the blanket first, which they legitimately thought was a gift for helping us move. Upon opening the mugs they realized that we were in fact having a baby. They were elated. Some quick explaining was needed about the hard seltzer Kristin had finished a bit ago. We definitely fooled them and my suspicions proved to be correct about my mother, she had a card already filled out congratulating us, and had been carrying it around for months.
The next few months were filled with lots excitement, telling friends, even a trip to Hawaii, all while slowly watching Kristin’s bump grow. Things seemed to speed by until January, everyday since then seems to move a little slower.
We are now on the agonizing home stretch. Agonizing both in the sense of time and Kristin’s physical state. Once you get down to the final month, moving in any capacity becomes a chore. Additionally we seem to have what must be the most active kid ever in the womb, and while that’s thrilling for me to be able to feel the near constant kicks and punches, it’s not as thrilling for Kristin when it’s 3:00am. I think the anticipation growing about finally meeting our little kiddo is slowing down time. Everyday crawls by at this point. COVID-19 has made things a little more complicated but we’ve managed through it. Kristin has been working from home since early March. I just started a leave from my office so we can both quarantine leading up to the birth. If either of us become ill now, Kristin will likely have to labor and give birth alone. After which both of us would likely be separated from our new family member to prevent them from getting COVID-19.
Despite all that, it’s nearly impossible to suppress the overwhelming joy and excitement you feel leading up to a newborn babies arrival. Kristin will be 36 weeks this Friday, which basically means the kiddo could arrive any day. We even have the hospital bag already packed. Until then we’ll just be taking it day by day, hanging out at home, waiting for the little guy or girl to arrive.
Wow, what a whirlwind the past few months have been. We haven’t made a blog post since the middle of June! If I wrote in detail about everything that’s happened since then this would be a novel of a post so instead I’ll try and keep it to the highlights.
Despite not making it to San Diego back in May when we planned on it we had the rare miracle of Kristin and I both having a full weekend off together at the end June to make it out there. Upon arrival, we were promptly greeted by Teo, the San Diego Simonets’ newest addition to their family, a Golden Doodle.
It’d been quite awhile since we’d been down to see my Uncle Christopher, Aunt Christine, and their three kids, Nico, Brennan, and Eric. Spending some time in the sun surrounded by family was just the getaway we were looking for. We hiked Torrey Pines, went to the San Diego County fair and spent a lot of time in the pool!
Most of you know but for those that don’t, we moved! Kristin and I had picked out our first apartment together in Bloomington around two years ago and although we were sad to leave it we are overjoyed to have purchased our first home in Woodbury.
We moved the last weekend in August and have been in a constant state of unpacking since then. Despite the mess we really are enjoying owning our own home.
Two subjects fit under this heading.
First, Kristin’s parents purchased a gorgeous cabin in Park Rapids back in July. Their old cabin was over 8 hours by car from the Twin Cities so we had only visited one time. Their new cabin is right around 3.5 hours so we’ve already been up there several times fishing, relaxing, and visiting with the Emmons family.
It’s a great property on a beautiful lake. The fishing is pretty good too.
Second, last year I went on a fishing trip to Ontario with Mike (father in-law), Steve (brother in-law), and Adam (friend of Mike’s). We decided to go again this year in the middle of August. We went a little further north than last time to a place called Monster Fish Lodge. The beer was cold, food tasty, and fishing great. I even happened to catch my first Muskie, making myself and Kristin the only two in the family to have caught one!
Around the Corner
I’m not sure the holiday season will really provide us any relief from our increasingly packed schedule, however, getting more settled into our new home should give us some more down time.
Despite the bustle we have so much coming up we are excited for! Two weddings, a climbing trip, Halloween, Thanksgiving, more time with friends/family and…..
Don’t think you’ll escape this blog post without me mentioning that we are closing in on Christmas. Like it or not, Christmas music is already playing at the Simonet house.
Kristin and I have been laying low since our wedding and honeymoon, just settling into married life. We were pretty burnt out after December, however, the past few weeks we’ve started to get the itch to take a little getaway. We hadn’t been out to San Diego to see my uncle Christoper and his family for quite a while. The recent snow in Minnesota had us dreaming of warmer weather! A weekend getaway to visit family and the California sun sounded perfect.
We were planning on leaving Saturday on the first flight out. Most of you know we travel on my flight benefits I receive through my employer. It’s pretty simple, we fly in empty seats for little or no cost. While the flight to San Diego looked like it had empty seats earlier in the week, the flight load looked worse and worse the closer we got to Saturday. When we woke up Saturday morning, the flight was completely full with many other employees also trying to get on board the flight.
We decided to scrap the San Diego plan and try for somewhere we had a better chance of making it. Kristin mentioned she still wanted to hike Angels Landing in Zion National Park, a quick drive north from Vegas. I had already hiked it as a day trip in February 2018 and had been trying to get Kristin to hike it ever since. A quick glance at the flight to Las Vegas and we had a solid plan B with an opportunity to see some new friends of ours that live there.
On our honeymoon in December, we met the couple pictured below, Alex and Ellen. After we boarded our ship, it became apparent that a longer cruise like ours (11 nights) attracted a mostly older crowd. We met Alex and Ellen on the first night aboard and quickly bonded over being one of maybe five other young adult couples on the ship. By the end of the cruise, the four of us had become good friends. After our cruise one of our close friends in Minnesota was quick to remark that we were, “not allowed to replace her with our tropical friends”. Since then, we have always referred to Alex and Ellen as our “tropical friends”.
“What are you doing tonight?”, I sent to our group text with Alex and Ellen. Kristin was annoyed at my intentional vagueness.
“Just tell them already we are coming!”, she said
Despite the fact that we would arrive in Vegas in only three hours, they were elated we were coming and even invited us to stay in their guest room. The disappointment over not making it to San Diego started to fade and excitement over seeing our friends and going to Zion replaced it.
Landing just after noon we grabbed a rental car and headed to a staple stop on any west coast trip, In-N-Out. After some extremely delicious burgers and fries, we were off to meet up with Alex and Ellen. They had an awesome home about 10 minutes from the airport (also conveniently close to In-N-Out). It was great to see them again after getting to know them so well on the cruise. Their dog, Bella, was immediately suspicious of the new houseguests, however, after some careful sniffing we were deemed okay to hang around.
After getting settled in we headed to Downtown Summerlin to grab some drinks and walk around a bit. Every time I’ve been to Vegas previously, it’s been to climb in Red Rock Canyon so I really haven’t visited much of the area besides the strip and downtown. Summerlin was a really cool area to spend an afternoon in. We spent most of our time walking around this huge outdoor mall that had lots of cool spots to grab coffee, drinks, and food. That night, Alex and Ellen brought us to one of their favorite Mexican restaurants at which we promptly overate. We had a big day on the books for tomorrow so we headed back to their place and crashed.
Zion National Park is a three-hour drive from Las Vegas. We got on the road around 8 AM and started the drive north to Utah. It went pretty fast and before we knew it, we were surrounded by the massive walls of Zion. Parking was a little tough to find once we actually got to the park but eventually we snagged a spot and jumped on the shuttle to the Angels Landing trailhead. From the trailhead it’s about 2.75 miles up 1500 feet of elevation to the top. It’s known for its tough terrain and exposed scrambling. In fact, just days after we were there a man fell and died from the very same hike. Despite all this, it’s hard to pass up the killer views at the top.
I looked at my phone as the trailhead parking lot was disappearing behind me, “12:20”, it read. A quick google search on the drive here revealed the sunset was around 08:30 PM tonight, plenty of time. The start of the trail follows a small river and is fairly flat. As we progressed onward the giant wall of sheer rock we’d be hiking to the top of just kept getting bigger. As you look ahead, the trail appears to disappear into the rocky terrain. As you approach, a steep trail up the wall emerges carved by the Park Service.
After topping out this first steep section the trail leads you into Refrigerator Canyon. The trail follows a dried up creek bed surrounded by massive canyon walls with some absolutely stunning scenery. Shortly before you reach the end of the canyon, the trail takes a right and heads up a section of switchbacks named Walters Wiggles. These switchbacks are brutal and really felt more like a staircase than a trail.
Your reward for getting this far is Scouts Lookout. This provides the first view of “The Spine”. This section of the trail is what gives Angels Landing its fame. Continuing the trail from here takes you along a narrow ridge ascending the last 500 feet to the summit with 800 to 1000 foot drop-offs on either side. The Park Service installed a chain railing on most of this ridge to aid hikers in navigating the highly exposed terrain.
The ridge took around 45 minutes to complete, mostly because of the number of people on the trail. Many of the sections are so narrow they can only accommodate one person at a time leading to miniature traffic jams on many sections of the ridge. Kristin has never really enjoyed hikes over rough terrain but she did extremely well and looked like she was having a great time. As you crest the summit you’re greeted with a spectacular view of the valley. A short traverse across a flat section of ridge brings you to a large flat rock where you can enjoy the scenery and take a little break before heading down.
After enjoying the views and having a snack we headed down. With the adrenaline of reaching the summit worn off, and a large amount of traffic going both directions on the ridge, going down quickly started to feel tedious. However, before long we were back down at Scout’s Lookout.
We cruised down the rest of the hike and 3.5 hours after we started we were standing back at the trailhead with big smiles. Our after hike meal choice was made probably ten minutes into starting the ascent, Culvers in St. George. Burgers with sides of cheese curds hit the spot! We packed back into the car and headed back to Las Vegas. We had originally planned on hitting the hot tub when we got back but were so worn out just put in a movie and relaxed before heading to bed.
We got up around 4:15 AM on Monday to try and make the first flight from Vegas back to Minneapolis. To our dismay, there were seven more people booked on the flight than there were seats. Fortunately, in Vegas the early morning flights have a higher than normal no-show rate (any idea why?). If any city is likely to have someone miss a 6 AM flight, it’s Las Vegas. Just before the plane door closed, it became apparent there was going to be three seats, just enough for Kristin, myself and one other airline employee to make it on board.
It always feels good to be home after a trip, but reality came rushing back. Kristin went into to work right after we got home and while I wasn’t planning on going into work, due to some weather impacting the east coast, I ended up there anyway. Regardless it felt really good to have a quick weekend getaway to an amazing place like Zion and even better to visit our tropical friends. Not sure when our next blog-worthy trip/event will be, nothing planned as of right now but we’re prone to last minute adventures!
“Domain expired” read the email. Our wedding long past, the website domain we bought for the big day “KristinandMatthew.com” was expiring. My mind ticked trying to think of how I could put this to good use. Not many people have a web address consisting of only their first names. A blog? Maybe.
I’ve always liked the idea. You lose so many little details when recalling a trip or event by memory alone. I wrote a blog for several days a few years ago documenting my trip to Hawaii with a college roommate. It was tedious posting every day of the trip but going back and reading it years later is a joy. You forget so many fun memories if you don’t write anything down. Even pictures and videos don’t seem to bring back all the detail and feeling that your own narrative does.
Kristin was lukewarm on the idea. “What would we write about?” she asked. It was a fair question. Our lives are not any more or less exciting than anyone else we know. Still, I liked the idea of cataloging what may seem like mundane details of our lives for later reading. I wonder how many adventures or fun moments with friends and family have slipped our memories.
While Kristin will likely need some more convincing, I can’t think of anything else to do with a web domain too perfect to let expire. A blog it is. Wish us luck.