Two years ago today we were in a very different place in our lives. Millie had been born 19 days earlier with a congenital heart defect and we had been living in the NICU at University of Minnesota Children’s Hospital ever since.
More often than not in recent months my posts on this blog have been about Millie or congenital heart defects (CHD) or Millie and her CHD. Of course this is totally understandable given the impact Millie and her CHD has had on our lives. And honestly, I probably post about Millie more on social media as well, which might still be the case even if she didn’t have a CHD. Part of the reason for that is that she’s still little and is constantly changing. I used to post way more often about Tucker when he was little too because he was always growing and changing and doing cute things. All that being said, I have some stuff to share about Tucker.
Tucker is becoming quite an amazing young man in his own right. Sure, we have the typical struggles I imagine most parents of 10-year-old boys have. Homework. Practicing trumpet. Working on his science fair project. Cleaning his room. Ugh. Just get it done! But in truth, we are pretty strict with Tucker (maybe more so than we need to be) and he deserves to be recognized for some amazing accomplishments in recent weeks.
Let’s start with Cub Scouts and the pinewood derby. In February, Tucker competed in his fifth pinewood derby. Each year he has designed the cars and built them with his dad’s help. And each year he’s taken on more and more of the craftsmanship himself. As a second year Webelo, this year was his last for competing in the derby and he did the bulk of the work on his car himself, with supervision from dad. And would you believe it? He won first place in his pack! He was so stunned when he won he had a huge smile plastered on his face, but looked like he was hyperventilating as he held his trophy for pictures. So cute.
Because he won first place at the pack level, he was eligible to compete at the district level. So a couple of weeks ago he did just that. At the pack level they use a double elimination method to determine the winners of the race. But at the district level, races are timed. Each car races three times, in three different lanes and the times are averaged. Tucker’s car was getting such good times that we knew early on he would place. When they announced each of the top ten cars our anticipation grew as they got to first place and read his name and time. Again he was surprised. And that trophy is huge!
After the awards, when Tucker went to retrieve his car, a group of younger scouts and dads surrounded him and asked him all sorts of questions about how he built his car and what he learned over his years racing. It was like he had his own fan club. We are so proud of him. He did an amazing job and now we’re on to the council race in June!
Arrow of Light
Tucker also received his Arrow of Light award, the highest honor for Cub Scouts, a few weeks ago. The ceremony was very nice and touching. It included a candle lighting and a real archer, who shot an arrow for each scout to symbolize how their own arrows fly straight and true. He then received a hand painted arrow from his pack’s cub master with separate marks for each of his accomplishments in scouting as well as his arrow of light pin. After which he gave his dad and myself small version of his arrow of light pin to honor our support in his development as a scout. Then he crossed over the bridge and was welcomed as a Boy Scout. He is growing up so fast!
Papa was able to come to the ceremony, which was really special. Afterward, we went to Perkins to celebrate with some pie. Tucker also received some very nice gifts from Papa that will come in handy at scout camp this summer.
We feel so fortunate to have found a scout pack/troop that has been so welcoming after our last pack folded due to lack of interest/parental support. These people are so kind and there is so much parental/ community support, it’s been very rewarding for Tucker to be a part of it.
A couple of weeks ago Tucker left home for the first time without any family members. He traveled to St. Louis, Missouri with his school’s concert choir and band. They were gone for five days and performed six times at various churches, schools and even Concordia Seminary.
They also toured the Anheuser-Busch brewery (they got to see the Clydesdales), visited City Museum, climbed the tower at Concordia Seminary, saw the famous arch, had a bonfire, ate Ted Drewes frozen custard and had a flat tire on the bus. So exciting.
During their travels they stayed in a dorm, a school, a hotel and a home stay with families from one of the churches they performed at. Quite the adventure, if you ask me.
He was so busy. He sang with the choir, played his trumpet with the band, played in the chime ensemble and narrated a piece for the orchestra. We also learned after he got back that he had a solo in choir, which we were told he did very well!
We were fortunate to be able to see and hear all of his hard work for ourselves at the Spring Music Department Concert last Friday. This is him singing his solo:
I missed him so much while he was gone. A few tears were shed. But it was an amazing experience for him to be able to share his faith through music.
When they returned home we heard from more than one chaperone that Tucker’s energy level is amazing. We were also told that he was very helpful with the luggage at every stop.
He and his bestie sat behind the choir director and her husband on the bus. She told us that they were good traveling companions, but that Tucker had to be told “Shhh. Stop whistling.” or “Shhh. Stop tapping.” on more than one occasion. (Oh. We know. He’s never not making noise at home. At the concert last week he received the Energizer Bunny award from his choir director. Well-deserved.
Tucker has made it onto the A honor roll for seven quarters in a row now. It’s pretty remarkable. Despite the battles about getting homework done efficiently, he is really a very good student and takes his studies very seriously. As I’m sure he’s mentioned to most of you (he’s pretty proud), he’s in fifth grade, but taking sixth grade math and so far he’s acing it. His vocabulary and reading comprehension were off the charts on his standardized tests again this year. A fact that is always amusing to me as I vividly remember a very tearful Tucker proclaiming in kindergarten that he didn’t want to learn how to read!
We could not be more proud. And he does it all while being so heavily involved in so many musical ensembles. He practiced his trumpet religiously, which is always amazing to me considering what a struggle it was to get him to practice piano just a few years ago.
In short, despite everything we have been through these last few years, Tucker is doing so well. It’s not as though he hasn’t been affected by what our family has experienced. Without question, he has. But he has managed, in most cases, to power through and do amazing things. He’s a good kid through and through – a good Christian, a good student, a good scout and a good friend. I’m blessed to be his mom!
We have no idea what made her wake up screaming like that. Pain? Trouble breathing? Night terrors? Not a clue.
She was laying in bed between us when it happened because she had already had a restless night and I couldn’t get her settled into her crib. I had just dozed off when the scream sent me into panic mode.
Glenn turned on the lights. Her color was fine — no blue lips, fingers or toes. She wasn’t indicating any pain or discomfort. Just a blood curdling scream and some heavier breathing.
Afterwards she was restless, and her breathing was more labored than usual for a bit. But eventually she calmed back down into a more restful sleep.
Now I can’t sleep. So I’m sitting here watching her breathe. Willing her to be okay. Praying that it was just a night terror and nothing related to her heart or disorganized organs.
She’s been restless at night for a week or two now. It makes me nervous that something is wrong. So I was already on edge before the scream tonight.
I watch her breathe a lot. I always have. Probably always will. Sometimes it’s in awe of her strength. Sometimes it’s out of fear (like tonight.) Sometimes it’s with immense gratitude that she is breathing at all.
Watching the rise and fall of her scarred chest is all at once a source of anxiety and a comfort to me. It’s a strange paradox.
And so here I’ll sit, until exhaustion gets the best of me, watching her breathe as she sleeps.
There is no cure for a congenital heart defect (CHD.) Having a CHD is a lifelong condition. You can’t grow out of it. It doesn’t go away with medication or therapy. And it certainly isn’t cured with surgery. But there seems to be a common misconception that once surgery is over, the CHD is gone.
It happens a lot. People find out that Millie has a congenital heart defect for which she had open heart surgery (OHS) and they want to know if she’s okay now. If she’s, “all better.” These are hard questions to answer and make people truly understand.
Yes, Millie is doing very well. She’s thriving in almost every way imaginable. And for that we are so unbelievably grateful. But she is not cured.
The surgery she had at 18 days old repaired her heart defect and made it possible for her heart to function despite its structural defects, but it did not make her heart “normal.” Her mended little heart does not look or function like ours. Her heart had to learn how to work around its new structure to do its job and keep our little heart warrior alive.
Let me explain in more detail. Millie has a heart defect known as total anamolous pulmonary venous return (TAPVR). In Millie’s case, this meant that pulmonary veins, which are supposed to return oxygen-rich blood from the lungs to the left atrium of the heart for distribution to the rest of the body, were not connected correctly.
TAPVR is what is known as a critical congenital heart defect, meaning she would not live without surgery to repair the defect. Her left atrium (in fact, the entire left side of the heart) was underdeveloped so the pulmonary veins had connected to her right atrium, which meant that she wasn’t getting the oxygen she needed. The only thing that likely saved her from needing surgery immediately after birth was a hole between the left and right atriums (an atrial septal defect) that allowed some of the oxygen-rich blood to mix with the oxygen-poor blood to deliver a small amount of oxygen to her body.
There are two surgical methods typically used to correct this defect. The first involves disconnecting the pulmonary veins from the right atrium, moving them and connecting them to the left atrium, where they belong. Because Millie’s left atrium was so underdeveloped, this was not a viable option for her. Instead, her cardiac surgeon proposed removing the existing wall between the two atriums and creating a new wall that would essentially result in the pulmonary veins being connected to a new, larger right atrium.
As you can imagine, this would be a difficult surgery on an adult. Now imagine a surgeon (with fairly large hands, I might add) performing this surgery on a heart roughly the size of a walnut. And keep in mind that open heart surgery performed on an infant is no different than on an adult, except that everything about the person is tiny and more delicate. Millie was put under, an incision was made, her tiny chest was cracked open, her heart was stopped and she was connected to a bypass machine. For hours, this machine kept her alive while her surgeon worked on her tiny, delicate heart.
The slideshow below shows what a normal heart should look like, what Millie’s heart looked like prior to surgery, the proposed repair and what her heart essentially looks like after surgery.
The surgery to repair Millie’s heart defect was successful. But her heart is still not “normal.” The new wall between her right and left atrium is what’s known as a bovine baffle. (That’s right, Millie’s part cow now.) She has regular EKGs and echocardiograms to make sure that her heart function is strong and that her heart and the repair are growing with her.
For a while after surgery she needed medication to manage her blood pressure. Fortunately, her blood pressure is fine now and medication is no longer necessary. But it’s something we check regularly to be sure it stays that way.
Because of where the surgeon needed to work within the structure of Millie’s heart, there was a risk of a heart block. This occurs when something (like surgery or structural changes to the heart) interferes with the electrical impulses that serve as the heart’s natural pacemaker. During her last Holter Study (a 24-hour heart monitoring test) Millie’s heart was still pacing from a different location than a normal heart. As a result, her heart rate was lower than a normal infant’s, ranging from 54-126 beats per minute compared to 80-160 beats per minute. This may or may not correct itself over time and we don’t know the long-term effects. In the meantime, we just have to wait and see what happens.
Of course, the most immediate challenge post-OHS were the feeding issues that kept us in the hospital for almost another month. Millie suffered a paralyzed vocal cord resulting from intubation prior to, during and after surgery. This caused her to aspirate her feedings. We thickened her formula in an attempt to help her feed, but this was so difficult to get out of the bottle she would tire long before getting the nourishment she needed. Ultimately, this resulted in a second surgery to insert a g-tube to help with feeding so she could focus on growing stronger so we could go home.
Millie also has a chronic cough that continues to be concerning. It’s the kind of barky cough that causes perfect strangers to stop and take notice. But after numerous consultations and follow-ups, neither her pediatrician nor cardiologist nor pulmonologist nor ENT can find a reason for the cough. So, here again we just wait and see if anything changes for better or worse.
And let’s not forget that in addition to her CHD, Millie also has a condition known as heterotaxy syndrome (or situs ambiguous). We basically have no idea where most of her internal organs are. Obviously, we know where her heart and lungs are. We know her stomach is on the opposite side as ours. We know she has multiple spleens that are all connected (polysplenia.) We know her liver is midline. We know the surgeon who performed her g-tube surgery couldn’t find her appendix to remove it. But that’s about all we know. It appears they are all connected in a way that works for her, and for that we are grateful. But we have to be very cautious with any abdominal discomfort in the future and she likely won’t be allowed to play any sort of contact sports.
So when you ask me or another heart parent whether their child is fine now and we look a little exasperated, please know that it’s not you. It’s just that life is not that simple or black and white for families living with CHDs. We worry a lot because there is a lot to worry about. More than we ever thought possible.
We may turn you down for a get-together if you or someone in your family is sick – even with just a cold. We may even pull our other children out of school for a few days when there are too many viruses going around to avoid bringing something home to our #HeartWarrior. We can’t come out and play when the air quality is poor or if it’s too hot to breathe easily. We won’t visit your house or let our kids ride in your car if there’s a risk of exposure to secondhand or environmental smoke. Truly, it’s not you. It’s just that these things and so many others are now a matter of life and death for our family.
Two times as many children die from CHDs than all other childhood cancers combined. That’s a shocking, sobering fact. Too often, it’s not the heart itself that causes a hospitalization (or worse) for someone living with a CHD. It’s an infection or some other health issue that developed and put too much stress on the heart. Even after surgery (or surgeries) to repair a CHD, these mended little hearts are fragile. As heart parents, we will do whatever it takes to protect them.
At 20 months old, Millie is doing amazingly well. But she is not cured. We are very cautious when it comes to her health. We make sure she never misses a scheduled follow-up with any of her doctors. We request appointments in between checkups when ANYTHING concerns us, no matter how minor. And we don’t take unnecessary risks.
So let me say it again. Surgery is not a cure for a CHD. There is no cure for a CHD. It is a lifelong condition that requires yearly followup with a cardiologist and other specialists.
January 14, 2014 is a day I will never forget. It was supposed to be an exciting, joyous day. It was the day we would see our baby in a level 2 3D ultrasound for the first time and find out whether we were having a boy or a girl. Instead, that day we learned our miracle baby had a congenital heart defect (CHD). Little did we know what a miracle she would truly be.
The following is a public service announcement to women of a certain age (I’m looking at you, AARP ladies) who insist on speaking without thinking.
Don’t. Just don’t ask random women when they are due. And, if you do and it turns out they’re not pregnant, quit while you’re behind, shut up and walk away.
Let me back up. Roughly thirteen months ago, I gave birth to a beautiful, miraculous baby girl. Since then, I have been asked some form of the “When’s the baby due?” question countless times. Sometimes even when holding that beautiful baby girl when she was only a few months old. Are you kidding me?
Somewhat surprisingly, it’s always women who are beyond a certain age who seem to ask. It’s never men. Never women my own age. It’s always, always women nearing or perhaps already enjoying retirement. Shouldn’t they know better? Haven’t they been here themselves just a few decades ago? Is it intentional rudeness? Or do they lose a filter once they receive their AARP cards?
These are the same women who, when I actually was pregnant, made incessant comments about my size, shape, level of discomfort, how many babies I was carrying, was I coming back to work, and on and on and on. They’d follow me into the bathroom and use hand gestures to demonstrate how big I was. As if I didn’t know! Also, how rude can you get?!
Now, full disclosure, I was HUGE at the end of my last pregnancy. HUGE! Not only was my baby girl 9 lbs. 10 oz., but I was carrying so much fluid that my c-section resulted in a literal geyser in the OR. The surgery team (all except my OB/GYN who knew it was coming) screamed and jumped away from me.
Obviously, I still have a significant belly just over a year later, otherwise I wouldn’t be on the receiving end of these questions/comments. My stubborn post-partum belly is not a surprise to me. I was 29 when I had my first baby and I never entirely lost the belly. A few years later I had a miscarriage just past the first trimester and even that belly hung around for a while. So it was no surprise when I had a baby at the ripe old age of 38, the baby belly wasn’t going to go quickly or quietly. It’s putting up a fight.
But here’s the thing. It doesn’t bother me. I don’t love that I can’t fit into my old clothes. And I really hate shopping right now. But I’m not embarrassed by it. Self-conscious? Maybe. But who isn’t? I’ve been self-conscious of my body at every weight and shape I’ve ever been.
And that’s the thing that really got to me today when I was hit with the “So when is the baby due?” question.
Instead of dropping it and leaving me alone when I said I wasn’t pregnant, this woman pressed on like a steamroller of insults and insensitivity.
“I’m sorry. I didn’t mean to embarrass you. But my granddaughter is pregnant. She’s real petite and her tummy looks just like yours. So that’s why I said it. You look just like she does. But I bet you’re glad you’re not pregnant in this heat. You’re probably hot anyway. I’m sorry to embarrass you. Are you looking for anything in particular? I’ll leave you alone now.”
OMG! Shut the hell up and walk away!!
First of all, I’m not embarrassed by my belly… until, women like you insist on making assumptions, then speak without using any common sense whatsoever.
Furthermore, you should be the one that is embarrassed by how insensitive you are. And, now that you have insulted and embarrassed me repeatedly, it’s not my job to make you feel better about your social faux pas so quit digging yourself deeper and shut up.
Most of us learned early on that it is never okay to assume a woman is pregnant. Unless you know for sure, just don’t say anything. Isn’t that what we tell our filterless toddlers?
Today’s incident and others like it are irritating to be sure. But I can tell you from experience, the irritation is nothing compared to the heartbreaking pain you feel when you have to deal with the same questions/comments after losing a baby. So for the love of God, just don’t say anything if you don’t know the real circumstances.
Now back to my belly. I get it. I’m overweight. And presently that extra weight is carried in an unreasonably large muffin top. But that belly has two c-section scars, a topographical road map of stretch marks and virtually no working nerve endings to speak of anymore. But that’s okay with me for now. It’s worked really hard carrying two remarkable children to term.
And that second baby? Well, she was born with a congenital heart defect (TAPVR) and organs that are in some very unusual placements (heterotaxy.) She had open heart surgery when she was 19 days old, g-tube surgery a few weeks later and has some seriously bad ass scars to prove it. We call her #SuperMillie and she is amazing. I’m so thankful she is here with us today that my focus is on enjoying every moment I have with her and her brother. So I really don’t have time to worry about how my belly looks right now.
So… Sorry. Not sorry. If you want to comment on my post baby belly below, feel free. But please, when you see me or any other woman with a little extra belly in real life, be kind and keep your comments and questions to yourselves.
It’s hard to believe that our little Super Millie is nine months old already. Time is flying by at an alarming rate.
Health-wise, Millie is doing really well all things considered. In February we took her in a few months early for her cardiology checkup because we have been worried about a barky cough she’s had since the hospital. Also, the cardiologist we had been seeing left so it seemed like a good time to get set up with the new one, who is actually the cardiologist that diagnosed her congenital heart defect (CHD) in utero.
Prior to her appointment we were asked to do a Holter Study, which is a test where Milllie wears a heart monitor for 24 hours and we make notes about her activities. It’s not easy keeping a very mobile, nearly 8 month old (at the time) from removing her own monitor leads. Fortunately, she only succeeded once on purpose and once by accident, so we got a good picture of her heart rhythms throughout a typical day. What we learned is that due to the location of her repair, Millie’s heart is still pacing from a different part of the heart than normal. As a result she has a very low heart rate. Her heart rate ranges from 54-126 beats per minute with an average of 82/min. I believe a normal infant heart rate ranges from 80-160/minute. This is something that may correct itself over time or may not. There is really no way to know. Her cardiologist said its nothing to worry about now, but I find it very unnerving. I find myself checking her breathing A LOT while she sleeps.
The rest of her cardiology checkup and tests went fine. Her repair looked good on the echocardiogram and seems to be growing with her. Her heart function also looked good on both the echo and EKG.
The cardiologist could find no cardiac reason for the cough so she sent us back to Millie’s ENT and arranged for us to see a pulmonologist. We saw the ENT about two weeks ago and he did another endoscopy to check Millie’s vocal cord paresis, which still looks nice and healed. So he gave Millie a two week trial prescription of Zantac to see if maybe reflux was causing the cough. Because her cough isn’t constant, it’s hard for me to say whether that made a difference.
We see the pulmonologist today to have Millie evaluated for primary ciliary dyskinesia. It’s a very rare condition that sometimes occurs in conjunction with the heterotaxy syndrome (her misplaced organs we sometimes refer to as situs ambiguous) Millie has in addition to her CHD.
I’m very nervous for this appointment because I don’t know what to expect. I know there will be blood work. But I’ve heard that there is also the chance of a fairly invasive lung biopsy to diagnose this. I’m worried. (Hence the late night blog post after months of nothing. Sorry about that, by the way.)
Developmentally, Super Millie really lives up to her name. Much like her older brother, this girl is a rock star. She’s been crawling for months now, has been pulling herself up and walking along furniture for close to two months and over the last few days has been standing up straight and balancing on her own. She is VERY close to taking those first steps. Which is alarming for me, because she already gets into enough trouble while crawling. She says Mama, Dada and her own version of Tucker. I think she tries to say dog sometimes when referring to Billy. She’s picked up some baby sign language and can ask for milk and tell me she’s “all done.” Her fine motor and problem solving skills are ridiculously good, which is why she is so very adept and getting into or at pretty much anything she wants. Trouble with a capital “T” for sure!
She plays “So Big,” peekaboo and hide and seek. She claps her hands. She really loves music – both making it herself and dancing to it. This girl’s got some serious rhythm. She “sings” herself to sleep when she’s tired.
Millie’s fifth tooth is coming in now. They’ve been coming in pretty fast and furious. Which for Millie means some general fussiness in the evenings for a day or so, then an hour or even less of pure anger and frustration, and suddenly there’s a new tooth. In addition to using them for eating, she also enjoys chewing on furniture and people’s feet (both her own and others’).
She is eating pretty well considering our rough start in that area. When it comes to baby food, she enjoys veggies over fruits and meats. We’ve just started some finger foods as well as letting her have tastes of some of our more easily chewable foods. She seems to be enjoying that. She did go through a period where she really liked taking bites of mine or Daddy’s M&M cookie ice cream sandwiches in the evenings, but she seems to be over that now. (We’re fine with that. More for us.)
Because we haven’t had to use Millie’s g-tube in months (yay!) we had hoped to get it removed after the cardiology visit if all went well. But with the possibility of more tests by these other docs and who knows what possible procedures, we held off. But boy am I excited to get that thing out soon! Although she hasn’t succeeded since the one time at the end of December, Millie is very persistent about wanting to remove it herself. I also worry constantly that with all her climbing and moving that she’s going to snag it on something and pull it out accidentally. Even though it’s not hard to take care of (I flush it once a day), her desire to tug at it is a constant source of stress for me.
She had her nine-month checkup with the pediatrician last week. It was mostly a non-event. She got a flew booster and the doctor pretty much used her as a teaching aid for a nurse practitioner student that was following him. It’s funny, with Tucker these well-child visits were a huge deal to me. With Millie, they almost seem pointless. The doctors don’t do much when compared to her other checkups and even when I do have questions, I usually forget to ask them.
But it is nice to get her growth stats, which were as follows:
Weight: 17 lb. 4 oz.
Basically, she’s just under average for height, relatively small as far as weight and has a pretty big head. About what we’d expect given her health issues and genes (Glenn and Tucker have big heads too).
She’s strong and smart, full of personality, and as far as we’re concerned, practically perfect in every way. (But a few prayers wouldn’t hurt as we head to see another new doctor today.)