This is your dad. I never knew I could love someone the way I love you. I've loved your mom for a long time, ever since I was a boy. I had no idea what love was back then. I was just reacting to feelings and hormones, but actually those feelings and hormones were part of God's plan to get me ready for this little adventure we're on right now with you. And thank goodness those feelings have grown into something solid and dependable for your mom. Your little issues just make me love her all the more as I watch her take such good care of you and sacrifice so much for you. Sometimes I feel like all our lives have been building up to this point -- this experience with you. You've become such a centerpiece to life. I get a little scared about that because I know you're not the center of the universe, God is. Our family and this experience exists for His good pleasure. But it's still hard not to place you there in the middle. You've completely taken over our lives. Maybe if I write some of this down now, you can read it someday and understand why I act so crazy about you. It's your fault! I'm crazy because you made me this way! My love for you is different. It's not like with your mom, and actually not even like with your other brothers and sisters. I love them a ton, don't get me wrong, but no one has taken such a strong seat in my affections in quite the same way as you have. When Francie dislocated her toe this week and we went to the ER, Mom just kept thinking something crazy would happen because crazy things always happen when we go to the ER with you. I hope after you read this, you'll see how uniquely invested we are in you. We don't love you more than your brothers and sisters, but the reality is you've taken us to places physically and emotionally that we never even dreamed of. And I haven't begged the Lord for anything as much as I've begged Him to let us keep you.
After all, you rule our home right now. Everything revolves around your schedule. You wake up at around 8 AM. That's when we turn off the feeding pump. Your pump has been running all night long at 33 mL/hour. Katelin is our dietitian at Mott. She carries around a little calculator and punches in some numbers and tells us what to set your pump at. Most moms just listen to their baby's cry. Most babies have different types of cries -- one for when they're diaper's full, one for when they're tired, one for when they're in pain, and one for when they're hungry. When their mom hears that hungry cry, they either nurse their baby or give her a bottle. And then the little babies quiet down. Usually you have to pat their little backs to help them burp and sometimes they spit up all over you. You don't really do that stuff though. You just have your pump and your schedule and Katelin's calculator that tells us what to do. That part is kind of hard on Mommy. She was really hoping to nurse you and read your cues for when you would be hungry, but we just can't do that for you. And we were hoping we'd be done with your pump a couple weeks ago when they said you could start drinking from the bottle again, but you just hate your bottle! I don't know why. You love to suck on your binky and your thumb and your dresses and your toys and even this morning you were sucking on my elbow! But you hate your bottle. We convinced Katelin and Dr. Z to let you try some of mom's frozen breast milk thinking you just didn't like the taste of the stinky fish formula they have you on, but you won't take breast milk either. These things are hard, but I think they're good. They're good because they remind us that every moment we have with you is a gift. Every time I start your squeaky little pump I look at you. You don't look hungry, but it's time to eat and praise God for that little pump, or we might not have any more moments with our precious Lou-Lou. Usually you look back at me and give me one of those huge Louisa smiles, kick your legs and then roll your head to the side to tease me. You're so funny! Praise God for Katelin and her calculator. She knows just what you need. She grew up to be a dietitian and she knows just what you need.
Anyway, it's 8 AM and we turn your pump off. You sleep in Mom and Dad's room because Kelvin still needs a room to himself. His room is designed like the rooms I used to work at when I did my psychiatry rotation at St. Lawrence. All they have is a mattress on the floor. Just like Kelvin's room. That's because Kelvin does crazy things like shove all his toys down the register and rip the curtain rod off the wall and bust the screens out of the windows and draw on all his walls and bang bang bang his toys on the door at night. So, we had to screw the windows shut and take everything out of his room except his bed! He's a crazy brother, so he needs a room all his own. And Marisa stays in the guest room. She came to help Mom and Dad the very week you went back to the hospital in April. She was supposed to come a month before we went back for your second surgery and Mom was going to teach her how to take care of the house and all your brothers and sisters while we were gone. But instead, she had to come without any training at all and take care of them because you got sick sooner than we thought you would before your second surgery. Praise God for Marisa. She really saved the day in so many ways while we had to stay with you for 7 weeks in the hospital.
So anyway, you still sleep in our room. You probably will forever. I can't imagine you sleeping too far away from me. I like having you close. So, you wake up around 8 AM and we turn your pump off. At 9 AM it's time for your meds. You get Lasix, Zantac, Aspirin, and a multivitamin in the morning. We just give it to you through your tube because you don't really swallow things anymore. Praise God for your medicines. The Lasix helps you pee so you don't have fluid building up in your body or in your lungs. Your little heart would struggle otherwise since you only have a single ventricle. Sometimes, the doctors call kids like you "single-Vs". That means single ventricle. They say things like, "That's a problem you see in single-Vs", or "Most single ventricles run into such-and-such a problem later on". That's something that makes you special -- your single-V. It's actually a pretty cool nickname. You have a lot of nicknames. We call you Lou, Lou-Lou, Blue-Lou (when you look blue), Single-V, and the one that's really sticking lately is Lupita. Even Kelvin calls you Lupita now. Anyway, you only have one ventricle. It's the one on the right side that you have. The left ventricle is the one that never grew. That's why they call it Hypoplastic LEFT Heart Syndrome (HLHS). "Hypo" means less, or insufficient, or not enough. Plastic means growth or ability to grow. So that's why your problem has that name -- the left side of your heart didn't grow enough. It's a syndrome because there are lots of different problems and complications that happen for people who have a problem like you do.
Anyway, you get Zantac to help protect your tummy. At night-time, we give you Zantac and Prilosec. These medicines suppress acid in your tummy and make sure you don't have any reflux. This is good because you had that yucky bleeding in your poop that put you in the hospital back in April. Hopefully this will help you not have any problems in your belly that will cause more bleeding. It also prevents reflux. Reflux would be bad if it damaged your lungs because your heart would get even more stressed if your lungs were damaged. And your oxygen level is usually in the upper 70s or low 80s. Most kids your age (and adults too) have oxygen levels between 95 and 100%. You were supposed to have oxygen levels much closer to 90 after your second surgery (the hemi-Fontan), but your levels have stayed kind of low. The doctors think it's because you have these blood vessels called collaterals that are connecting deoxygenated blood with oxygenated blood, probably connecting to your pulmonary veins. I think this is a problem that happens after the surgeries you've had, but I really don't understand this very well. Dr. Z says if your levels start dropping more, he's going to have to take you back to the cath lab and try to zap those vessels so they stop dumping blood into the wrong place. Praise God for Dr. Z. He studied medicine and little kid hearts for a long time and he knows a lot about your heart in particular and he took you to the cath lab and saw that we needed to fix your aorta. He's a smart guy and really nice and we're so glad he's been able to help Mom and Dad take care of you.
So anyway, you take the aspirin because there are parts in your heart that aren't actually real tissue! There are parts of your heart that are made out of a synthetic substance called Gore-Tex. They make boots and clothes and other things out of this material because it's waterproof and really strong. I guess it's good to have waterproof patches in your heart so they don't leak the blood. You see, Dr. O is your surgeon and he knew just how to measure and cut the Gore-Tex in order to build you a new aorta. That's the big blood vessel that carries blood to your body. Your aorta didn't grow when you were in Mom's tummy so Dr. O had to build you a new one. And the first one he made worked really well, but then it got a little kink in it like the hoses at our house get kinked when Natti and Noah try to fill up the chickens' water. The doctors call that kink a coarctation. So, Dr. O had to build you a second aorta with more of that Gore-Tex stuff. And when you get older, probably when you're 2 or 3 he'll have to build a little tunnel out of your right atrium and the superior and inferior venae cavae to connect to your pulmonary artery with more of that Gore-Tex type stuff. That way all your blood will return from your body and go directly into your lungs. This will mean your single ventricle can focus on just pumping blood to the body and not worry about the blood going to the lungs. So, that Gore-Tex is nice because it's waterproof and strong (or blood-proof and strong in this case), but it can be kind of sticky and make your blood want to form blood clots on it. And if you formed blood clots in your heart, they might break loose and go to your brain and cause a stroke. You've already had at least 3 strokes. Probably that happened during your surgery, but your brain is young and you've recovered well. Mom even took you to the Neurosurgeon this week and he said your brain looked great! Praise God for aspirin, Gore-Tex, and for Dr. O and neurosurgeons!
Anyway, at 9:30 AM you get your Lovenox shot. Lovenox is another kind of blood thinner. So you have 2 medicines that help keep your blood from making blood clots -- aspirin and Lovenox. You see, when they saw those strokes in your brain, they worried you might have a blood clot and you did -- one on the central line in your leg. They have to put a special line in the vein in your leg to give you medicine when you're in the hospital. But, like that Gore-Tex stuff, those lines are sticky and you got a clot around it. So, the doctors say you have to take this shot twice a day every day for at least 3 months. Mommy usually does your morning shot. The nurses taught us a little rhyme to remember which leg to poke, "right at night, left in the morning". It was hard to give you shots at first twice a day. You used to cry hard, but now you're pretty used to it. Last night, you even smiled at me when I gave you the shot, you're so tough! We have to keep the shots in the fridge and they can't give us too much at once or the medicine will go bad. So we get a special delivery in a cooler every week with that week's shots right to our doorstep from a pharmacy in Flint of all places! Flint is the town Buppa grew up in. It's kind of a depressed area of the state ever since they stopped making cars there. But, they make your Lovenox there and we're glad for that. And we have a stack of styrofoam coolers in our garage that reaches almost up to the ceiling and a freezer full of FREE freezer packs! I love FREE things because I'm dutch. You're dutch too Louisa! You'll probably like FREE things when you are grown up too. Praise God for Lovenox and those nurses who taught us that funny rhyme so we know which leg to poke you in.
So anyway, also at 9:30 AM we do your first bolus feed. Katelin helped us slowly get your tummy used to taking 100 mL at a rate of 200 mL/hour. You're pretty smart Louisa. Can you tell me how long that will take for the pump to run it into your tummy? Someday, you'll learn math and you'll figure out that 100 mL given at 200 mL/hour will take half an hour or 30 minutes to run. It's nice that it only takes 30 minutes because then we can disconnect you from your pump and you're much easier to take care of. Usually, at that point we give you some time in your swing. You love to swing. You have an old swing that we wind up. It says it will last 30 minutes, but I don't think it lasts that long. That would be the same amount of time that your feedings take! But I don't like to feed you while you're swinging, because one time you did puke up your bolus and that was gross. That was the only time in the last 3 months that you puked though! That's pretty good.
Anyway, we keep doing those boluses every three hours during the day. At 3 PM you have another dose of Lasix. That makes you pee some more so then you usually need a diaper change. By 6:30 PM you usually have your last bolus feeding and then you're good until 10 PM when we have to start your continuous feeding again at 33 mL/hour. Again, it was Katelin's calculator that said we should go from 10 PM to 8 AM so you get enough, but not too many calories. You were getting kind of fat pretty fast, so she said you should slow down a little bit! You were getting fat, but not very strong with your muscle tone, so they have us working with Early On. That's the program for kids who have problems being a little behind in their development. They do exercises and show Mom some things to help you get stronger. I'm sure you'll get stronger soon. You do hold your head up a little better and today we put you on your tummy and you rolled over! That was great, but when we tried again, you just cried. You don't like being on your tummy. I always worry you might not like it because of the surgery you had and the pressure on your bumpy sternum when we put you on your tummy. But it's been a couple months since your surgery, so you're probably pretty well healed by now.
So at 9 PM we give you your night medicine. That's Lasix and Zantac again, along with the Prilosec. And at 9:30 PM I usually give you your Lovenox shot (in the right leg of course, "right at night!"). Your legs are so bruised, but you're so tough. Then eventually Mommy and I go to bed and I set my alarm for sometime around 3 AM. They told us to only put about 4 hours of formula in the pump at a time, so that means I have to get up and put more in at around 3 AM. Normally, I would have hated having to set an alarm for 3 AM (most people like to sleep during that hour), but I actually kind of look forward to it. I wander out to the kitchen and get the formula out of the fridge. We keep it in these shaker, blender bottles. They're kind of loud when you shake them because there's a little wire ball in the bottom that stirs up the formula and keeps it from clumping. The rattling sound sometimes wakes you up. And the lid on it is really tight and when you pop it open it makes a loud popping sound that startles you sometimes. I usually go into the office next to our room on the way back from the kitchen to shake the bottle and pop the top so I don't wake you up. I usually look out the window at the front lawn into the darkness and wonder about all the little creatures who are out and about at that time of night. Right now is lightning bug time, so I usually see those too. The house is so quiet and peaceful at 3 AM. You've probably noticed our house is usually not very quiet or peaceful thanks to all your crazy brothers and sisters, but at 3 AM it's quiet. So, I go back to our room and fill up your pump and just stop for a moment to look at you. You're so beautiful. You're peaceful, like the house is peaceful. You're quiet. You're moving more now, so sometimes I find you in a crazy position in your bed, like sideways with your Hungry Caterpillar sitting right on top of your head! Sometimes you jerk around and twitch in the night and we can hear you bumping the rattle end of your Hungry Caterpillar. I like hearing that sound. It reassures me that your little heart is still beating away. The "back-to-sleep" campaign says you shouldn't sleep with any stuffed animals or toys in your crib, but I'm glad to hear that Hungry Caterpillar and I figure if you survived ECMO you'll probably survive the Hungry Caterpillar on your face. That might be foolish, but you've made me act and think a little crazy now. Sometimes I bend down and kiss your sweet little head. You might startle a little and let out a deep sigh, but you don't wake up. I imagine myself stealing those kisses for a long time. Maybe when you're 5 and 12 and 18! Maybe I'll sneak into your house and kiss that little forehead when you're 36! Unless you're still sleeping in our room with us. I wouldn't mind that! I'll kiss that little scar on your forehead from the EEG lead that dug into your skin after you had your arrest when you were 3 days old. I like to kiss that little scar. It's already fading away like some of the memories of those days. Those memories are fuzzy and vivid at the same time. Weird how that can happen. You won't have any memories of that. In fact, all this stuff will just be normal to you. That's weird too. It's so abnormal for us.
Anyway, I love my 3 AM visits with you. I say a quick prayer to Jesus thanking Him for another 3 AM. I secretly hope you have to keep doing those continuous feeds for a long time so I get to keep my 3 AM meeting with you. Maybe you and I can keep doing a 3 AM meeting once in a while, even when your pump is done. You'll probably be in your own room, or more likely in the room with the other girls. We can still do a 3 AM meeting though. And when you're all grown up maybe we can still do a 3 AM meeting. Maybe even after you move away from me and our house is quiet all the time and it's just me and Mom here. Maybe even then we can meet at 3 AM and look out at the dark lawn and watch the fireflies and wonder about the little creatures who are out and about and I can know that your little half-a-heart is still beating. I'll kiss your little EEG scar and I'll thank Jesus for another 3 AM.
 |
| 6 months old! Way to grow Lupita! |
 |
| Here we are trying our first bottle in months. We picked the idyllic setting of MSU's Alumni Chapel. Our faces tell the story pretty well. I believe Carissa's words were, "Epic Failure!" |
 |
| Here's Frankie with her dislocated toe. Carissa's sister Molly sent us a picture of Francie when she was Louisa's age and sure enough, they could be twins. Frankie was really tough though, even with 7 mL of lidocaine getting injected into her tiny foot! Way to be strong Frankie. Her pulse-ox was 97% (always nice to know we didn't miss an HLHS diagnosis in one of the other kids!) |
 |
| Soccer ball + Hudson Beals vs Frankie's toe. Hud wins. |
.jpg)
.jpg)
