Two Months Post PA Banding Surgery

*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) with an extremely small (almost non-existent) right ventricle and large VSD. Both the Aorta and the Pulmonary Artery are well developed and going into the left ventricle (as far as we can tell right now).  We are getting care at Texas Children’s Hospital in Houston, TX, whose heart center is ranked number one in the nation. There is no real cure for Sunley’s condition, so on June 11, 2018 she had a  PA Banding surgery, and will later receive a Glenn, and Fontan (a total of 3 heart surgeries). Our hope is that these surgeries will work well enough to avoid a heart transplant and she will lead a long, full life with only those 3 surgeries. Sunley spent her first 6 days in the NICU, went home for a while, and then spent 26 days in the hospital after her first surgery at 6 weeks old.

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Tomorrow, I will be 29 and Sunley will be 2 months post-op, and to say that my life has taken some interesting turns in 29 years is an understatement. I have had some pretty wonderfully epic adventures, but nothing compares to this one. My big babies have gone to Midland now. They left yesterday morning an it HURT. I’m so grateful that they were SO excited to go, because it made the goodbye so much easier. I know they’re in great hands with my parents, but it is about the least natural thing for a momma to be away from her babies for such a long period of time. “Grateful” doesn’t even begin to describe how I feel toward my parents. Derek will fly on Southwest to Midland Sunday evening and take Hadelyn to her first day of Kindergarten, and I’m glad he can do that. I don’t expect to see the kids until their first trip back here on August 31st, which is 3 weeks away. In the meantime, I’m trying to not just be sad and waste the opportunity to develop some better eating/exercise habits, although the temptation to eat donuts and watch Netflix ALL day is strong. This is my chance though. I live one floor above a work out room, and across the street from the prettiest running trail in Houston. C’mon Liz. This is NOT the time to fall into a sadness cave and procrastinate! I got most of my crying out before the kids left, but I will admit I got home to their empty room (and Haddie Mae’s beloved sponge on the kitchen counter) and it made me pretty frustrated and helpless. The summer just went by so fast, and a month of it was spent with us in the hospital and not really “with” the kids. But this is where we are, and it is temporary.

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Hadelyn has mostly been really happy about going to Midland. The last night they were here, Derek and I were spending time with the kids and Hadelyn asked, “Are y’all just tricking me? There’s a hospital in Midland, and do you just not want to go home and just stay here?” In other words, she thought that we COULD be in Midland, and just didn’t want to. It pretty much broke my heart, but I’m SO glad she asked so we could have the opportunity to clear that up! There have been a few times that the effects of all the instability and change have definitely made themselves known through the kids behavior, and it really pains me to see that. I’ve spent the last couple weeks trying to “train” Hadelyn how to react when she gets really sad or angry. Not sure I’m doing any of it right, but I had her memorize a phrase for when she starts missing Momma or getting really mad:

A lot of things are different, but three things are the same: 1. Momma and Daddy love me 2. God will always keep me safe, and 3. I  am a good girl.

She loves saying it, and I hope it will stick with her at least enough to feel just a little secure. And I’m praying that God just fills the gaps that the inconsistency has left in my kids’ lives. At least I know that’s one prayer He will always say yes to: “Please help my kids feel safe and loved.” I don’t think God says no to those prayers.

Now for the medical update since our cardiology appointment yesterday — Good news first: Sunley has hit NINE pounds!! We weigh her in kilograms, and officially she is 4.110 kg, which works out to 9 lbs 0.96 oz. I am relieved that she isn’t losing weight, but her doctors all agree that she needs to be gaining at a more rapid rate, and that she needs to be taking in more volume per feed. Right now, she gets 80ml bottles of breastmilk fortified with 1 tsp of Similac Total Comfort, which should make it 24 cal/ounce. She doesn’t always finish her bottles though. Also, the doctors want her to be taking at least 90ml, and our cardiologist would prefer her eating every 2 hours instead of every 3. Unfortunately, Sunley just will not do 90, and especially won’t do every 2 hours. In addition to all of that, they tested my breastmilk and it is only 17 calories per ounce instead of the typical 20. They referred to my milk as “skim,” so that could definitely be the issue. While we thought we were fortifying the milk to 24 calorie, we are probably only getting it to about 20. And Sunley’s tummy doesn’t handle any fortifying heavier than that. All that to say the new plan is to try and squeeze in some extra feedings, fortify additionally with MCT oil, and give her 1-2 formula bottles a day that don’t include breastmilk. I told the doctor, I’m pumping because I want Sunley to have the health benefits of breastmilk. So, if breastmilk is not what will get her to a healthy weight, then I’m all for switching to formula. None of us want that, but it may be what we have to do. Yet another “mom-opinion” of which I have to let go. We all decided that we don’t need to make the switch yet, and even if we do eventually go to formula, she can still get 1-2 breastmilk bottles a day to get the benefits she needs. My goal this whole time has been to pump for a year, and end up with a big enough freezer stash to give her one cup of breastmilk for a year after that. (I guess I’d have to pump until she is 18 months, since frozen breastmilk only lasts 6 months) So she would be getting at least some breastmilk for 2 years. I can still do this if we end up switching to formula, and maybe even have some to donate (although who wants 17 calorie milk?). Donor milk will be something I look into if we end up needing to switch, but I think it would be pretty hard to acquire, given that the very small preemies get first dibs (and RIGHTFULLY so!). Side note, if everyone donated just a little milk (and organs haha) our lives would be a tad easier. Just a little CV humor for ya ;) The 17 calorie thing is a little hard to take, because I’m already painfully aware that my body was unable to build another healthy baby heart for whatever reason, and now my body cant even provide the milk she needs. I know none of that is my fault, logically, but it’s incredibly frustrating. And of course I wonder a lot of “what-ifs,” but that’s a downward spiral that I just can’t allow myself to dwell on.

Sunley’s echocardiogram looked good, so we know her weight gain is not a cardiac issue, and that is good news. Her sats were even 81 at the appointment which was just nice to see, given that they are usually low 70s. Our next appointment is August 30th, and if she is still having trouble with weight gain, she will be admitted and we will go from there. I’m guessing that would mean an NG tube, although no one is trying to jump there yet. Did you notice the date? August 30th. That’s the day before the kids are supposed to come visit us. This makes total sense because WE TRIED TO MAKE PLANS! HA. If she is admitted, I don’t think I’ll want the kids coming that weekend. But we aren’t there yet so I’ll worry about that if it happens. Honestly, I feel like her weight drop was due to the diuretics increase recently, so I’m hopeful that now we are back on track. Hopeful, but not sure. I’m surprised that the doctors don’t want me weighing her every day. I think they have probably seen parents get really sucked in to the numbers and miss out on all the good stuff, and I’m grateful that they realize the importance of quality of life. I am super tempted to go get a baby scale from Target, but I will make myself wait until her weigh-in on the 30th. The plan stays the same whether I weigh her daily or not so there really is no point. The heart center moves to a new building on September 18th, and the group of patients transferred over there apparently get gift baskets, so we are pretty sure Sunley just wants one of those baskets ;) Sunley, Momma will get you a basket if you just gain weight!!

We can’t wait to go home, but we also want Sunley to be able to wait a long time for her surgery, and those two emotions directly conflict. It’s weird to be anxiously waiting for your baby’s heart to start failing (again). There’s a lot of very unique emotions that have come with this process, that you can only fully understand in this bubble, and we have been so blessed to meet other families going through this single ventricle process with us. We have been blessed through all the Christians praying for us, checking in regularly, sending us dinner, gift cards, or just a card of encouragement. I have kept every single card we’ve been sent, and I’ve tried to keep a record of the tangible ways in which people have helped us, but our support system is so vast that I’ve left out a lot. We are SO blessed. And as horrifying as this can be in some moments, it’s also so incredibly refreshing to be forced to re-prioritize your life. I love simple moments more than I ever before. I love the ways that Derek and I have been able to restructure some family routines and goals and simplify our parenting. His working from home has been so wonderful, because he always joins us for breakfast and lunch. Just having a couple hours more with him every day has been great for all of us, and I’ll definitely miss that when we go home.

We have LOVED having some fun visitors lately! I've really missed my mom being here A LOT (someone go tell 16-year-old me!), but since she left we've had Derek's mom, my aunt, and some really wonderful friends who made the trek out to see us! I can't describe how good it is to see friends FROM THE OUTSIDE WORLD here. So truly wonderful and refreshing, and spiritually so SO encouraging.

Praying for weight gain, praying for happy kids in Midland, praying for less procrastination, more energy, more focus.

Home from PA Banding Surgery

*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) with an extremely small (almost non-existent) right ventricle and large VSD. Both the Aorta and the Pulmonary Artery are well developed and going into the left ventricle (as far as we can tell right now).  We are getting care at Texas Children’s Hospital in Houston, TX, whose heart center is ranked number one in the nation. There is no real cure for Sunley’s condition, so on June 11, 2018 she had a  PA Banding surgery, and will later receive a Glenn, and Fontan (a total of 3 heart surgeries). Our hope is that these surgeries will work well enough to avoid a heart transplant and she will lead a long, full life with only those 3 surgeries. Sunley spent her first 6 days in the NICU, went home for a while, and then spent 26 days in the hospital after her first surgery at 6 weeks old.

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Sunley has been home for 23 days now — three days shy of how long she was in the hospital recovering from her PA Banding surgery. Since July 7th, she has gained another 12 ounces, which put her at 8 pounds 13.6 ounces last Wednesday, July 25th. Unfortunately, her weigh in today showed that she’s lost 3.6 ounces in just 5 days. So frustrating!

At her cardiology appointment on the 25th (the one where she weighed 8lbs 13oz), Dr Ayres was pleased with her progress. She had been gaining steadily and her saturations are still holding in the 72-76 range. She did say that her lungs are unchanged (not worse, which is good, but still not better) and that she is still getting overcirculation through her PA. This means that she hasn’t fully grown into or out of her band. To me, this means that Dr. Heinle (surgeon) made it JUST right, but my understanding of the whole process is limited. This MIGHT mean that we could wait a bit longer for her surgery, which is one of my questions for Sunley’s next check up. I asked Dr. Ayres if we could start letting her sleep longer than 3 hours at night, and she suggested only doing that a couple of times a week. She also increased her Lasix and Enalipril to .4ml twice a day (instead of .3 and .33).

Today, Sunley got her 2 month vaccinations (1 month late because she was only 2 weeks post op and in the hospital when they were due). Her weigh in showed the weight loss, which could be attributed to the Lasix increase moreso than the sleeping 6 hours, but we decided to quit the 6 hour stretch for now. No biggie, but less sleeping again. Her liver is also starting to enlarge again. Another question for the cardiologist at the next check up, since I don’t fully understand what that means. I’m still learning lots, and feel like I’m always playing catch up!

The big kiddos leave in 10 days, and that has me pretty wrecked. We’ve had a few people ask us why were are sending them home without us. It was NOT an easy decision, and keeps me up a lot at night, but we both feel that this is the best option in a handful of less-than-ideal options. I realized pretty early on in this process that there is no way to protect any of my kids from being a little traumatized by all of this. It’s traumatic, thus there will be at least a small element of trauma. I think trying to act like everything is fine, or trying to keep things from being traumatic, would actually make it more traumatic in the long-run. What I CAN do is teach them how Christians react to trauma. How many “traumas” are too many in one paragraph?

We had a few options for the end of summer:

  1. (This is what we have decided to do) Send them back to Midland with my parents. Haddie Mae would start Kindergarten at MCS, where she went to preK last year. She would see friends and teachers she already knows (her teacher will hopefully be Brandi Little, a good family friend from church who HM knows very well), be in a place she’s familiar with, go to church at her home congregation, etc. Ruger could attend the parents day out twice a week that he was enrolled in last year. Same story — familiar environment for him. But that would mean very little time with all of us together. Derek should be able to travel out there fairly often, and the kids could come to Houston frequently. The day to day, however, would be without us.
  2. Keep the kids in Houston and send Hadelyn to a great public school, which our apartment is zoned too! But —err!— that public school is FULL. They won’t accept her unless she can’t speak English. The other public schools she could go to are not the ones I’d feel comfortable with. We could try and find a private school here that we could afford (fat chance), but even if she were in school here, I wouldn’t be able to have the level of attention or involvement that I feel is necessary. And my mom will be able to fill that role for me in Midland at MCS. Also, if the kids were here, then we would need someone staying with us again through all of the hospital time (and probably some before the hospital time).
  3. Hire a tutor or homeschool here in Houston. It’s a bit hard for me to explain to people who aren’t in our shoes, but this was just not possible. The exhaustion and complete dedication that having a child in the hospital takes just makes it plain impossible for me to homeschool. It was all I could do to remember to eat while Sunley was admitted last time. And to have a tutor whom I’d barely know alone with my kids every day is just not something I’m ok with, no matter how highly recommended they come. Besides all of that, and even though it’s “just kindergarten,” that is not the social experience I want for Hadelyn’s schooling. I was AMAZED last year at the difference just a few weeks of preK had on her. Staying home with a tutor just wouldn’t be the same. I even thought about asking a friend who homeschools her kids if I could hire her, but she’s over an hour away, and there’s no way we could handle to back-and-forth of that daily. And besides all of THAT, the hospital time with Sunley was VERY rough on the kids. Constant goodbyes not knowing when we were getting back home, about a hundred temper tantrums (sometimes from the kids, too), and many many dinners apart makes for a very unstable environment. I’m not sure I can peel my kids off of me one more time without losing it. It was hard on all of us. Also would need someone staying with us and taking the kids to/from while we had hospital stuff.

The only option that seemed doable, and the only option that didn’t require constant help here from family is the Midland option. While it will be extremely difficult on everyone involved, I do think it’s the most stable option. I have prayed and prayed and prayed for God to give me a new idea or different option, but He hasn’t. Maybe He’s planning something different, but for now I’m giving Him control of yet another piece of my life. I keep THINKING that I already gave Him control over these things, and yet I keep having to give Him more and more. I don’t get to be the main caretaker of my two older kids now — WHAT IS THAT?! I have seen my kids starting to wear some unrecognizable behavior as a result of all the instability this year and that hurts. There are tantrums where there used to be giggling and tears where there used to be silly faces, and to be just plain honest, sometimes it all seems pretty hopeless. But we have a lot of good moments too (most moments are great), and I KNOW that this piece of our lives is just a blip in the big picture. We WILL eventually get back to routines and consistency, and I’m looking forward to that.

I have lost a lot this year. But I have also gained peace, time with my husband, a better prayer life, a closer relationship with God, and a really awesome daughter. And I know God will continue to bless me, as I let go of more and more every day. I know He has more for all of us, but it’s hard to give someone something when their hands are full. I remember seeing an illustration years ago of this — a child clutching onto all of his toys, his arms full, and God holding a GIANT teddy bear behind his back and saying, “Trust me. Just put them down.” Not sure if that makes sense to you, but it sure has helped me at 2 am when I’m staring at the ceiling fan wondering what’s happening with my life and my babies.

On top of those struggles, I am constantly trying to educate myself on Sunley’s heart condition. Hypoplastic Right Heart Syndrome is so rare that there is relatively very little literature available for us in comparison with other single ventricle defects. Because of this, I’m having a hard time fully grasping how her physiology works. I’m sure this will get easier with time, but even well seasoned cardiologists and CVICU attendings become completely turned around when discussing her anatomy. 

Another question we get asked from time to time is why we are waiting to do the second surgery (Glenn Procedure). I’m not super comfortable discussing all of the risks of her next surgery — I do think Sunley deserves at least a tad bit of privacy with her condition, but in a nutshell I will say this: The older she is, the more she weighs, the more milestones she is able to hit before surgery GREATLY improve her chances of survival and a smooth recovery, according to her doctors. So we wait :) And we will wait as long as her heart, liver, and lungs want to wait. 

I did forget to mention in the last blog post that she will have a Cath before her surgery to check her pressures in different parts of her heart and lungs. Again, I don’t completely understand how this works, other than they do this to prepare for the surgery by taking data from different measurements in the heart. This is not nearly as invasive as a surgery, but there is a short recovery period to be expected. I know that sometimes, rarely, the Cath will show that your lungs/PA aren’t in great shape, and that can disqualify you from the Glenn. We are hoping that won’t happen, and we have no reason to think it will. No doctor has even mentioned that to us yet, though I am feeling a tad concerned that her lungs have still not improved. No reason to worry about it, but I guess it is kind of there in the back of my mind.

Enough of the heavy stuff. Sunley is the CUTEST. She is done with all of her sternal precautions! She hates tummy time, is still so close to rolling back-to-tummy, and is the smiliest baby I’ve ever seen. Nearly all of her hair has fallen out, so she has those newborn/old man hair patches and it’s pretty funny, especially in pictures. She coos all the time, and loves her big sibs. Ruger has gotten to be so good with her (Ya know, except for that time he stepped on her head…and the time he tried to pick her up by her arm..). He just SHOWERS her with kisses and pats her and it’s so so sweet. Hadelyn LOVES holding her, especially at church.  And seeing them all getting along together pretty much makes me melt Alex Mac style. INTO A PUDDLE.

Twenty-Six Days Post-Op from PA Banding

*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) with an extremely small (almost non-existent) right ventricle and large VSD. Both the Aorta and the Pulmonary Artery are well developed and going into the left ventricle (as far as we can tell right now).  We are getting care at Texas Children’s Hospital in Houston, TX, whose heart center is ranked number one in the nation. There is no real cure for Sunley’s condition, so on June 11, 2018 she had a  PA Banding surgery, and will later receive a Glenn, and Fontan (a total of 3 heart surgeries). Our hope is that these surgeries will work well enough to avoid a heart transplant and she will lead a long, full life with only those 3 surgeries.

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It's hard to believe that the photo above was only a few weeks ago. Sunley has gained about 12 ounces in just four days!! We are so proud of her! The last few days have been spent tweaking her meds to find just the right balance. We THINK we have found it now and so…drumroll…they are sending us home TODAY! She weighs a whopping 8 pounds 1.6 ounces and is going home with only 18 days left of sternal precautions. She eats around 3 ounces every 2-3 hours, so we are about to be very exhausted at home, but for happy reasons :) We worked with OT here at the hospital, and we feed her in very specific ways, so right now only Derek and I can give her a bottle, since we’ve been trained in it.

It’s been an emotional 24 hours, as we are officially “through” the first surgery. It didn’t go perfectly, but we are happy to be going home within a month of her surgery date (June 11). We are being sent home with more meds and slightly lower saturations than we hoped for, so I hope the next surgery gets us closer to our goals. Her lungs have still not improved since surgery, and so we are desperately hoping for positive changes there over the next months. She is going home on doses of Lasix, Diuryl, Enalipril, Zantac, Nexium, and Simethicone. The Simethicone will probably be stopped soon, and the rest will continue to be tweaked as she grows. All of these are oral and not injections, which is good. I downloaded an app to give me daily reminders for her meds, as well as track my pumping with her eating, to make sure nothing gets overlooked. They are also sending us home with a pulse ox for spot checks, but not constant monitoring. They weren’t going to send us home with one, but I pretty much insisted, just for my peace of mind.

The doctors told us to treat her like a newborn as far as outings go. So, we’ll be homebound for just a little while, but should be able to resume normal outings in just a couple weeks, within reason. I can go to Target as long as she’s covered, for example. (I specifically asked about Target, because PRIORITIES.)

Her bradycardia has been brief enough that it isn’t a concern, and her echo yesterday didn’t show anything new — Not that it didn’t show anything concerning, just nothing NEW. We all feel confident that she will not have a cardiac emergency between now and the Glenn, but her main risk is catching a cold or a stomach bug, or even a fever. The doctors also told us to limit exposure to non-vaccinated kids. I am 100% NOT asking for your input with this one. We have so many friends who we love dearly that don’t vaccinate their kids, so we were sad to hear this, but we agree with our doctors. It doesn’t mean we can’t be friends, and we absolutely still want to see you and spend time with you, but it does mean we probably can’t go camping together. And honestly, how are we supposed to know which kids at Chick Fil A or at a church meeting are vaccinated and which ones aren’t? So if you are in the no-vax club, maybe just discourage your kiddos from holding or kissing on our little ones. I know that if you aren’t vaccinating, then you obviously think this is a stupid rule for us. I get that not vaccinating is an option for a lot of people, but it is no longer an option for any of us, or our extended family. A runny nose could quickly end our time with Sunley, so not only do we have to ask non-vaxxers to use caution, but anyone who is even just suffering from a minor cold or cough. I HATE how much I have to care about germs now. I hate it A LOT. I’ve always been a “rub some dirt on it, build your immune system” mom, but I don’t get to be that anymore, and I need your support and understanding. Most of all, I need you to stay away if you are sick :) There is definitely a balance of keeping away from germs while still getting out and LIVING life, but our balance is permanently different than it was before. I’m really sad about that, so please don’t pick on me for having to change our rules.

Sunley will have weekly check-ups as she did before, and we are hoping to put off her Glenn procedure until the end of October/early November. I’m not sure she’ll make it that long, but that’s what we are hoping. Please keep us all in your prayers! Pray for her lungs to improve, and for her to continue to gain weight!

Sunley's favorite thing is watching her monitors every day. If she's upset, we just turn the monitor to face her, and she usually calms down. Our nurse a couple days ago decided that this means she'll be a doctor when she grows up, so she got her a scrub cap and it was pretty much the CUTEST.

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Twenty-Two Days Post-Op from PA Banding Surgery

*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) with an extremely small (almost non-existent) right ventricle and large VSD. Both the Aorta and the Pulmonary Artery are well developed and going into the left ventricle (as far as we can tell right now).  We are getting care at Texas Children’s Hospital in Houston, TX, whose heart center is ranked number one in the nation. There is no real cure for Sunley’s condition, so on June 11, 2018 she had a  PA Banding surgery, and will later receive a Glenn, and Fontan (a total of 3 heart surgeries). Our hope is that these surgeries will work well enough to avoid a heart transplant and she will lead a long, full life with only those 3 surgeries.

I really wish I could do a better job of keeping this updated, but the thing is, there can be several days in a row where we are just experimenting and seeing what her body does, so I have a hard time trying to explain that.

Since the last update, so many things have changed. First of all, Sunley is eating great! Feeding tube came out today!! Her echo didn’t show anything to explain her lack of weight gain. It did show some possible future issues with her mitral valve. There is a “ridge” near it (could cause some blockage), but also maybe a hole that could resolve the possible blockage issue. It isn’t causing any problems, just something to watch in future. Last Friday, we backed off of her diuretics a little bit more — completely came off of diuryl and just kept with lasix. Weaning off of diuretics ALWAYS causes some weight gain, but on Saturday morning, after eating well on Friday, she had a huge dip in her weight. I asked the nurse to check and make sure that they had used the same scale as the day before. When she asked the charge nurse about it, she was told that there was no way to know or track what scales they were using. In other words, we couldn’t trust ANY of the weight measurements we’d had that week. Also, even though I wrote down every feed and weighed every diaper, the nurse from the day before hadn’t recorded any of it. That was the 2nd time that had happened. So we officially made the call to get us back to a cardiac floor/pod. We were moved Sunday to EPod, which is in NICU2 specifically for heart babies. She has her own designated scale here, and the nurses have been WAY more meticulous than on the Neuro floor. I did let the cardiologists and Nurse Practitioner know that while all the nurses were very kind and helpful on floor 10, that is NOT the place for cardio babies in the future.They all agreed — in fact, as I mentioned before, most of our doctors didn’t want us going to 10—and now we are in much better hands. 

Well, when we got to EPod on Sunday, Sunley was experiencing very low sats, about 70-72. I wasn’t concerned at all, because I see those numbers often from her. The NP though was not ok with anything less than 75, and very strongly recommended putting her on 2L high flow room air to see if it would help. I agreed and immediately regretted it because Sunley HATED the cannula and was also very constipated (we had switched to 27 calorie fortifier that day). I went home that night knowing she was in for a long night, and that was extremely difficult. Before I left, the NP told me that if her sats continued to be low, they would consider putting in an IV to hydrate her or something (I can’t really remember the details of why), and I said absolutely not until I get back in the morning to discuss it. My head was spinning, because I thought we were just coming down to eat and take off wires, and instead Sunley had tape on her face again, with a cannula and way more monitoring. The NP was very patient with me that night and the next morning, explaining everything. They did not end up needing an IV, and decided that she must have been a little dehydrated from all the diuretics she’d been on. 

Luckily (more like a God-thing), our very favorite cardiologist, Dr Ayres, was the attending cardiologist for the first time since we’ve been here. She is Sunley’s official cardiologist, and also diagnosed her prenatally. I could do an entire blog post about how many times we’ve heard the doctors here RAVE about her — she is just short of worshipped at TCH, and for good reason. Anyway, when we saw her on Monday morning, she completely changed the “plan” for Sunley — took her off of all diuretics and put her on a blood pressure med (I’ll have to look up the name again) due to some squeeze/relax issues she noticed with Sunley’s single ventricle in the aforementioned echo. I have some more questions about this drug, but it does look like she will need this for the rest of her life. I haven’t totally accepted that yet, but I’ll get there :)

We removed the nasal cannula sometime on Monday, and she also had 3 huge bowel movements around the same time. She was much more comfortable after that. We changed a bunch of things happening with her on Monday, but NOW she is on 24kcal Similac Total Comfort fortifying her breastmilk, eating every 2-3 hours 65ml and up (sometimes even 80ml). She is on Zantac, her blood pressure med, and will later today probably get back on her Lasix, depending on the results from her Xray today. There is no talk of us going home yet, but I do feel like it could happen relatively soon. I have mixed feelings about that again. I was so ready to go home until we started changing everything, and now I’m nervous again.

Last night (Monday night), she did go bradycardic for just a couple seconds while she was crying. I was so shocked to hear this, because that hasn’t happened since the couple days after surgery. Actually, just as I typed that, it happened again for about 10 seconds. Hmm. I was also surprised to hear about the squeeze/relax issues with her ventricle, because I thought we were past that. Her sats now are running around 80 which is great. But I wonder how long that will last, just based on her patterns in the past. 

I also miss my big kids. I’m seeing them a lot more lately which is great, but I sure am missing a lot. I know it’s so temporary and short in the grand scheme of things, but it’s most evident with Ruger — he’s just growing so fast, and I hardly recognize him when I rock him at night. I think to myself, Who is this big kid in my arms?? He recently had a RIDICULOUS growth spurt (mostly in head circumference, unfortunately for him) and I just can’t believe how big he is. Two years old was probably my favorite age with Hadelyn, and I’m missing so much of it with my big boy. Right now, it’s looking like Sunley’s surgery will be right around the time Hadelyn starts Kindergarten. The public school that we were comfortable with here is full (I didn’t know public schools could be full), and I know that I will not be able to homeschool her while Sunley recovers from surgery, so we are very seriously considering sending the kids back to Midland when that happens. And that will be hard. No final decisions on that yet.

Here are some favorite photos from the past couple weeks. Some of them are "outdated" -- she doesn't have the head sticker or arm IV anymore. The most recent is the one with Hadelyn <3