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

Sixteen 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.

(Photo was taken at home before surgery)

Every day, the cardiology team rounds on each patient. They state their name, age, congenital heart condition, procedures that have been done, meds, etc. Sunley’s rounds usually start with “This is Sunley Nichols, and she’s pretty confusing.” While I’m all for my kids not taking the beaten path, I’m pretty ready for Sunley’s body to start acting as it should. Yesterday morning, she had lost another ounce even though we are feeding every 3 hours around the clock with fortified breast milk at 24kcal/oz (She doesn’t tolerate above 24 very well). After observing one of her feeds, the cardiology team and I decided that she needs an NG tube for now (a feeding tube inserted through the nose). We can still continue bottle feeds, but now whatever is left in the bottle at the end of a feeding goes in the tube. So she is still using her sucking skills, still having to work for her food, but when she is just DONE we quit and put the rest in ourselves. Our hope is that this will allow her to get some weight gain, and hopefully as she gains weight she will have more energy to eat via bottle. The cardiologists are hoping that the NG tube will be brief. But I’m preparing myself for a long haul with it because nothing is going as planned.

Because she has no cardiac drugs going, and really isn’t at a huge risk right now with her heart, they moved us from the cardiac floor to the neurology floor, because they have more open beds. I’m totally fine with this, because the cardiac ICU floors are always completely full, so us moving means that they have more room for more surgeries. With that said, transitioning to a new staff, slightly different equipment, and just an overall new routine is ROUGH. The nurses are not cardiac nurses, and I found myself having to RUN THE SHOW and repeat a whole lot. I’m ok with it, but it does make me just a little irritated. I’m so happy that my kid is the one who doesn’t require cardiac nurses but I’m tired of her getting the nurses that haven’t been around long or, now, don’t have experience with heart patients. I’ve definitely had to advocate for her more on this floor and that’s pretty exhausting. After we left, there was some big to-do about it and one cardiologist actually came down and gave me the option to go back to floor 15. So, I really can’t complain because I did have the option to go back. But I told him that as long as she will get the attention she needs then I can deal with having to be a little more on top of things. And we’ve seen our doctors 3 times today already, so I know she’s not being “forgotten” down on 10. If you feel like I should’ve done differently, kindly keep that opinion to yourself please ;) We’re exhausted but doing just fine.

Right now, our only goal is to get some weight on her so she can be big and strong enough for her Glenn procedure. Her lungs are still just as “wet” as they were right after surgery, but I’m told that it is not atypical for lungs to take a few months to heal, since we waited so long for her first surgery (we waited 6 weeks for the PA Banding Surgery). It was definitely a good decision to wait — she was bigger, older, stronger, and I know that certain parts of her recovery have gone so smoothly because of how long we waited. But, like every cardiac care decision, there are pros and cons with every option, and the con is that her lungs have been overworking for a very long time and now they are tired and have fluid and need time to heal. Her respirations look great, which has the team a little confused. The characteristics of her eating habits SHOULD mean that she has fast respirations, and that’s just not the case. So, today we did an Echo and tomorrow we will have an Xray. She is on a couple of diuretics, plus potassium and salt, plus a medication to help retain salt, and also on 2 antacid meds for reflux. They will also be running some blood tests. We are all just trying to figure out why this girl isn’t hungry enough to put some weight on! She is currently about 7 lbs 7 oz. So she’s gained only 6 ounces in 2 months of life.

I’m really not sure what to pray for. Do I pray that they don’t find anything wrong in the echo, or should I just pray that they find what’s keeping her so tiny?I’m not sure what’s gonna happen, but I’m very grateful for our team of doctors here. Oh, and by the way, if you read my earlier blog posts then you know that we almost had Dr. Mery as our surgeon, but then ended up with Dr. Heinle. I was emotional over the switch (I wanted Heinle originally but then just really got along with Dr Mery, and had a hard time with all the transition), just because the switching can be really stressful. Well yesterday Dr Mery announced that he is leaving to go to Austin, where Dr. Fraser went. So, there’s yet another answered prayer that didn’t feel like answered prayer at the time. If we’d had Mery, I’d be a WRECK right now knowing that we needed a new surgeon for her next surgeries. So I’m trusting that I’ll look back and see some answered prayers happening this week that don’t feel like blessings right now. Keep the prayers coming!

On a happier note, Sunley smiles all the time now, and has started reaching for toys and even trying to roll over! I mean, I can’t LET her roll over because of sternal precautions, but I’m still super proud :) We can't wait to have her HOME again! Here's a video from the night before her surgery. I love the innocent way Hadelyn calmed her own nerves while caring for Sunley <3 My babies are all pretty amazing. Ruger's amazing too, but he rarely participates once he sees me taking a video.

Eleven Days Post-Op from PA Band

*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.

 Since my last post, Sunley has moved to the CVICU on floor 15! Basically what that means for her is that she has officially survived her surgery, and now we are waiting to see just how well the surgery worked. Her nasal cannula and feeding tube are both GONE! She has been eating and taking meds by mouth. She has an IV in her arm, but it isn’t currently being used. So besides the leads on her torso and pulse ox on her foot, she is wire free, and we can see her WHOLE face. It’s so wonderful to see. She is eating like a champ, and for the last 2 days the doctors have let her eat as much as she asks for without limits.

Yesterday morning, Sunley had a chest Xray that was a little concerning. It showed too much blood flow to her lungs. She also has had a few times where her respirations have been too fast, and she has also had some very low saturations which have us all a little worried. After much debate, the cardiology team and we decided to let her continue eating as she was through today, and give her body a chance to resolve the issue itself. We should know today sometime with an X-ray if that is working. If not, we will go back on some more diuretics that we had weaned off. If that doesn’t work, we may be in a pickle — Usually, the next step would be to restrict feeds. But Sunley is SO behind on her weight, and weight gain is a major priority for her to even be a candidate for the Glenn procedure (which she needs to survive). Not sure what we would do if the diuretics didn’t work, because you also don’t want to stress out her lungs so much that THEY disqualify her for the Glenn. But hopefully we won’t get there.

I can’t believe it’s only been 11 days since her surgery. There are lots of people who have been in the CVICU for months and months, so I can’t complain —  I can’t wait to take her home, but I’m also very, VERY nervous about it. It’s so hard to know that we will soon be coming back to do it all over again. And next time, she has a much more invasive surgery planned. Our hope is that her lungs continue to heal, and we can wait several months before the Glenn. Being an older Glenn patient slightly reduces some very scary risks. The doctors have told us that they hope to send us home sometime next week with no monitoring equipment and no medication. I’m not sure we will get to do the no medication part, but it all sounds encouraging! No monitors sounds a bit scary to me, but I won’t miss all the alarms throughout the night. I’m pretty sick of waking up my baby while attempting to reattach her pulse ox! Right now, the only monitors she has are heart rate/rhythm, oxygen saturation, and blood pressure, and the only one thats raised concerns is her oxygen saturation, which randomly dips down form time to time. No one is really sure why, and unfortunately the extra blood flow to her lungs could mean that it will lower again. Right now, she ranges from the 60s to the low 80s — most of the time, she’s around 74. Pre-surgery, doctors said they hoped for mid 80s, then last week, they said she needed to be 75 minimum, and now they’ve said that as long as she’s in the 70s, it’s ok. That’s very hard for me to get on board with, because I’m still not over that we didn’t get to our mid 80s goal. But the fact is, we can’t change it. The surgeon technically could go back in and readjust her PA band, but the risk far outweighs the benefit in this case. Right now, it’s looking like she could be on the early side of receiving her Glenn, but we are all hoping her body decides to readjust some more and find a more stable normal.

Derek and I have been switching off evenings at home with the kids, and my Aunt Missy has kept them during the day (which makes her a SAINT). We try very hard to compartmentalize — when we are at the hospital, our whole focus is on Sunley, and at home we try not to talk about the hospital stuff much and just focus on our big 2 kiddos. But of course, it’s very draining and obviously pretty hard on all 3 of the kids. It’s possible that we alone are responsible for Uber’s current success —we use it multiple times a day because parking here is just very expensive. We’ve gotten LOTS of food from ladies at church and those have fed my kids and aunt for a LOT of meals, and me too when I’ve been home. We are daily blown away by the amount of prayers going up for Sunley. If you’re not already, please consider officially becoming an organ donor — there are SO many babies and older kids here waiting for transplants, and it just may be Sunley someday. It’s so hard to see knowing that so many decent organs end up being buried because someone just didn’t get around to making their organ donation wishes official. And in case I’m sounding too preachy, I didn’t get around to it either until I was told my daughter MIGHT need some new organs someday (Yes, unfortunately that’s plural — but hopefully will never happen).

As much as I miss home and our old routine, the hospital is actually pretty great. The rooms are pretty comfortable, Ronald McDonald has rooms for when you don’t have a sleep-in room, and most of all, you’re in this bubble of families all going through hard stuff. There aren’t any judgmental looks toward bald-headed little girls or moms crying on the elevator. Getting around in a wheelchair or lugging around an oxygen tank is perfectly normal. All of us had that gut-wrenching diagnosis moment — we all seem to have a phrase from that day that will always haunt us — but we all survived. It’s kind of a nice support group of people whose lives are on pause. Of course we all have the goal of LEAVING, but honestly it’s going to be very hard to leave every time she is discharged. We've also made some pretty strong bonds with some other families here -- one in particular -- and it will be very hard not seeing them every day when the time comes. I won't go into all of their details (because I did not ask permission to share any of it), but we have been so blessed to meet them, and I have no doubt we will be friends forever. We've already gotten our older kids together, and it's been so SO wonderful to be able to spend time together and laugh so hard that we forget for a minute where we are and why we're here.

I’ll post an update to this post below when we get the results back from her X-ray today. Pray for good news!

UPDATE: X-ray showed that she is still continuing to have too much fluid in her lungs. She is now maxed out on diuretics and still allowed to eat as much as she wants. We are praying the drugs do their job, and she continues to gain weight!

Heinle's Hands

These hands are nothing new to me

They seem like any pair

They don't seem rough or broken down

But, oh, these hands are rare

These hands have touched my child's heart

And in turn have touched my soul

These hands were made and blessed by God

And they will try to make her whole.

I never knew a pair so strong

Who knew just what to do

When a baby breaks and nearly leaves

These hands just might come through

I'm jealous of this pair of hands

That sees backstage

Sees ill, and gets to act

So here I sit, doing what I can

Using my lens to feel less trapped

I won't forget this pair of hands

No matter what the next day brings

Perfect or not, these hands were here

And now my daughter's heart can sing

                                         -Sunley's Mom

Five Days Post-Op from PA Banding

Sunley had a great day today. Since my last blog post, a few major things have happened:

1. Blood pressure has stabilized.

2. She is completely off sedation meds, and only receiving Hycet to control her pain.

3. She has been extubated (with a very brief lung collapse during extubation), has graduated from CPAP to nasal cannula on high-flow at 6 liters, and is now on the cannula at only .5L!

4. She is not on any cardiac drugs, very VERY slowly increased her O2 sats to 85, but now that we are weaning her oxygen support, those are hanging out around 78-80 again — hopefully they will increase just a bit.

5. She ate from a bottle twice. And Momma got to change her diaper :) Unfortunately, they weren’t happy with the feeds and yesterday while I stepped out for breakfast, I missed the OT rounds. When I came back, the nurse was putting her feeding tube in. It was absolutely horrible. Sunley was SCREAMING and it was beyond traumatic to see her like that and not be able to help. I think doing that without sedation is normal — maybe there’s a risk involved if you do it with sedation? I totally agree that she needed a feeding tube — But what made me unhappy was that my nurse didn’t inform me of that decision. There were many instances yesterday in which major changes were made without the nurse informing me. For example: She was unplugged from the pacemaker!! But I didn't find out until shift change about 5 hours later. Even when I tried to ask the right questions, I just felt like I wasn’t being informed fully. She never made any mistakes in Sunley’s care and she was very sweet, but I just had a “mom-gut” feeling. It was sooooo uncomfortable but at the end of the day, I talked to the charge nurse and requested a different nurse for the following day. She was very understanding, and today we have absolutely LOVED our nurse, Abraham. He explains literally everything that he does with Sunley. I so appreciate that because this is my new life now, and I need to understand what’s going on.

6. Sunley’s Bradycardia has improved too (hence the unplugging pacemaker)!! She is now around 110-120 while sleeping and sometimes even 145 when awake!!! Yay!!!!!

Once she gets her chest tube out and her pacemaker wires removed, we will graduate to a different unit — Either NICU EPod or Floor 15. Epod is like an “in-between step” between CVICU and 15. Floor 15 is where you go right before you go home.

Today, I got to HOLD HER!!!! And Hadelyn and Ruger were able to see her! Happy all around.

Derek and I are feeling so loved and supported. I told him the day of her surgery that while I obviously would give ANYTHING for her to not be going through this, I actually feel a little grateful for the experience as a whole, because it’s made me SO much more dependent on prayer. Praying has become my first reflex for everything, as it should have always been. I hope I never lose this reflex — it comes so easily when you’re in such a dire situation, and becomes much harder when life is normal and full of a million petty distractions. Don’t get me wrong — I also would give ANYTHING to fix this for Sunley. Just trying to see the silver lining.

We have been getting SO. MUCH. LOVE from the church all across the world, and that’s pretty amazing to me. We’ve had cards/messages from just about every corner of the US, Australia, South Korea, and the list goes on. I wish I had an exhaustive list of everyone praying for her, but there is no telling! I have had people tell me (while attending churches in places that I’ve never visited) that they heard Sunley’s name mentioned in prayer or in sermons. What’s amazing is that while we are so thankful and so humbled by all of the support — we aren’t the least bit surprised. That’s just the way God designed the church to be, and it’s exactly the church we’ve always known. I’ll never underestimate again the encouragement brought from simply saying “We are praying for you.” So many people are asking us what they can do, and honestly, that’s been the best thing for us. Because when you believe in prayer and you see it WORKING, you feel just a little sense of relief. We also have several people who have come and stayed with us, watched our kids, taken our kids on outings, brought food, given us gift cards, ordered us pizza from out of state, and more more more. We are going through something horrible in seeing our baby suffer, but we keep finding ourselves saying “We are SO blessed,” and that is because of the support of the church, as well as many friends, “facebook friends,” and even a few complete strangers.

I feel a million completely contradicting emotions every day. Any time I start to feel a sense of relief, I also remember that she has at least 2 more open heart surgeries to get through. And when those happen, her O2 sats, heart rhythm, EVERYTHING has to start back at square one and readjust. And of course, even if her Glenn and Fontan go perfectly, she has no guarantee that her heart will “last.” I’m hesitant to talk about the darker sides of her condition, because I desperately don’t want people (and especially kids her age) treating her like she’s fragile. I’ve battled with how much to share here and on social media, which pictures to post, etc, because I don’t know how she will feel about all of that being on display when she’s older. I don’t want her heart condition to be the first thing people know about her. I know what it feels like for people to judge you before they really know you, because of my celebrity days on ESPN, One Tree Hill, and Extreme Makeover Home Edition ;)

Our goals for this weekend include weaning off the nasal cannula, removing her chest tube, removing her pacing wires, and MOVING to a less critical care unit! Praising God with every breath for such a smooth recovery! I’d like to think that God is keeping a list for me in heaven of all the prayers that have been sent up for her. And I plan on reading every one.

One day Post-Op from PA Banding

This was written last night:

June 12, 2018

It’s been a very packed 2 days. We came in Monday morning at about 6.45 am to check in and be admitted. We were told that there were currently no available rooms, so we were sent to the CVICU waiting room on 17 and waited for a few hours. There was talk of her surgery being moved to a different day, and I’m so grateful that it wasn’t. I would have hated to do the whole routine and the sibling goodbyes again. Around 10.30 or so, we took her back to the holding room on 18 and waited for Dr. Heinle to be available. Originally, her surgery was scheduled for Monday at 8am, then pushed to 1pm, and we ended up sending her back with her anesthesiologist around 2.30pm. She did so good with the waiting (without food for about 6 hours). We had prepared many scriptures to read to her, gathered scriptures from friends and family, and sang to her. She was so cuddly and content, and we got in all the snuggles and kisses that we could. Sending her back was very difficult, and I was grateful for the hour and a half delay, to be honest. After I handed her to the doctor and he started walking to the OR, I turned away and didn’t watch him leave with her. Reflecting on that later, I wondered how God felt watching Jesus being arrested. It comforted me to realize that He knows my pain. At least the people taking my baby are HELPING her.

If you were following the updates on Facebook, then you already know that her PA Banding surgery went very well. It was much quicker than expected, and Dr. Heinle was quickly happy with all of her numbers and saturation. During the surgery, though, the doctors did an echo on her heart and noticed some issues with her mitral valve. It seemed to be a bit on the small side, and he described it to us as “turbulent.” In order to repair that issue, Heinle considered putting her on bypass, entering the heart and cutting a hole in that area, but then decided to continue with the less invasive PA Band and see if it works. I was happy with that decision, but it does mean that there is a small possibility he will have to go back in later on. He may also need to go back in to adjust the PA band, because her saturations haven't been great (low to mid 70s).

We were able to meet with Dr. Heinle briefly after the surgery and he explained all of that to us. I took a photo of his hands — I know I will always want to remember them. Dr. Heinle is probably the most busy individual I’ve ever met in my life. He’s in very high demand around here, so much so that I felt a little bad asking him to pause for 5 seconds for the photo. But, you know, PRIORITIES. He asked for a copy, but I told him YOU CAN’T RUSH ART ;)

We got to go back and see Sunley around 7.30pm. Honestly, it really wasn’t hard to see her hooked up to so many things. I had expected her incision to need to remain open, but they were able to close and that was wonderful. Her color looked great. The only issue last night was that she did not want to be sedated — that girl can stay awake through a LOT of drugs. We slept in the Ronald McDonald rooms last night and got to bed around 11 or so.

We got up this morning and made it in time for rounds on 18 at 7am. I love making it in time for rounds because you get to hear the shift change review and get to hear the doctors explaining things to residents and students. Very helpful for me. Sunley had a bumpy night, especially with her blood pressure. The whole day today was spent tweaking her meds so I will just sum up the things that concerned/are concerning us:

1. Blood pressure. Her blood pressure has seemed a bit low throughout the day. They are still tweaking meds to hopefully help with that. They said it could be due to all of the sedation.

2. Sedation. Sunley is just never completely “out.” She will move around when you touch her, and they need her to be more still for now while she has her breathing tube in. They’ve given her tons of meds, so much so that I’m starting to lose track. I’m really trying to do a good job of asking whats going in every time, because I want to make sure we don’t overdo it (Ha! As if I really know). I just want to make sure that there’s a good reason for everything, even though they obviously know what they’re doing! There’s one sedation med (How do you spell cardmine?) that they’ve stopped giving her because of her blood pressure.

3. Blue Right Leg. Sunley’s right leg has off and on turned NAVY blue. Like, not slightly discolored — BLUE. It lasted a very long time today, and it’s most likely just due to the femoral artery line in her groin. That has been resolved now with better positioning. It’s been pink and completely normal looking for the last few hours.

4. Kidneys. Her urine output was very low all day, but as soon as I asked a few people to pray for that she peed a ton!! And her urine output has been good ever since.

5. Oxygen Sats and Breathing Tube. Her sats will ideally land in the mid 80’s. Unfortunately, they’ve been steadily in the high 70’s, occasionally hitting 80 or 81 all day. Every time we start trying to wean the breathing tube, they drop a bit. So at least another day with the breathing tube to give her body some rest.

6. Mitral Valve. There was growing concern today that another surgery was needed (the one discussed during her PA Banding), but after an echo and xray, it was determined that her issues are most likely due to fluid in her lungs (a lot of fluid) and not her mitral valve. GOOD news, although we obviously need that lung fluid to leave her body, which we are working on with Diurel (spelling?).

7. Heartbeat and Heart Rhythm Issues. Sunely’s heart is beating weakly. The doctor said that they rarely figure out why that happens, and it will often resolve itself. She has had some escape rhythms as well, and is currently on an external pacemaker to help with that when needed. 

I know I’m forgetting things, but we are exhausted. Sleeping here at Ronald McDonald again, and will try to get rest. I love that baby! We met our older kids tonight at the hospital park, and took them to dinner. It was good to see them, but very hard to leave. So glad that we have SO much family and church support during this. We would be in a very different place without that. I will try to write more tomorrow but it’s definitely time for lights out for this Momma!

Photos from the day:

Consultation with Surgeon, Pre-Surgery (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 the game plan is to have a PA banding, Glenn, and Fontan (a series of 3 open heart surgeries). 

Today, we had our consultation with Sunley's surgeon, Dr. Heinle to discuss her PA banding surgery. We were previously assigned to Dr Mery (back when we expected Sunley to need this surgery within her first week), but now Dr. Mery is not available. Neither was Dr. Heinle (no openings until the fall!), but fortunately we have Dr Ayres (Sunley's cardiologist), who went above and beyond and convinced him to squeeze us in. Dr. Ayres has been one of the biggest answered prayers through this -- her dedication and passion for her job and her patients is seriously unbelievable. I can't count how many times we have said how incredibly thankful we are for her.

Our consultation was set for 9am, but Dr. Heinle was pulled away suddenly for a couple of hours, so I don't think we actually met with him until about 11.45 or so. I think we should probably get used to that. I'd imagine there's lots of emergencies in the heart surgery world. Much of the consultation was a review for us by now, but he did seem to spend more time than other doctors making sure we understand that this surgery may not work. Not fun to hear, but I guess that's necessary to understand before getting started. Of course, we feel super confident that Sunley will do great, just based on how many Christians are praying for her and based on how well she's done so far! We will go to the hospital sometime Sunday afternoon, and Sunley's surgery is scheduled for around 8.30am Monday morning. All the doctors seem VERY anxious for her to start gaining some weight! That weight gain will be one of the main factors for when she gets to go home. I decided this last week that she eats better breastfeeding than bottle, and so it was nice to see that my mommy instincts were right -- at the appointment today, she had gained 1.6 oz in just 6 days, after switching to just 2 bottles a day. Woo!!

I told my mom I'm in "Go Mode" now. Monday is going to be beyond difficult, but for now I'm just 100% numb and surviving. I'm definitely having some minor physical side effects of so much stress -- I'm beyond exhausted and my stomach is upset pretty much all the time, but I think that's pretty normal for anyone in this situation. We plan on spending the rest of this week and the weekend having fun with all 3 of our babies at HOME! Thank you so much for all the of the prayers -- There are no words for the abundant comfort we have felt in the past months. 

Please pray for a successful PA Banding, speedy recovery, and no more enlargement of her heart (which is currently 73% enlarged).

First Surgery Scheduled

*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 the game plan is to have a PA banding, Glenn, and Fontan (a series of 3 open heart surgeries). 

Today, I had my postpartum checkup with my OBGYN across the street from Texas Children's. I'd been waiting on a phone call from the surgeons but still hadn't heard from them, so I decided to be a Momma Bear and just show up at the surgery coordinators' offices after my appointment and inquire in person. It sounds silly, but it took a whole bunch of courage for me to do that -- I do not like being pushy one little bit, because I am TERRIFIED of hurting anyone's feelings (Yes, I make things way more confrontational in my head than they actually are). But I did it. And turns out, nobody was offended. Yes, I am crazy.

About five minutes after meeting with them, Dr. Heinle's coordinator called me with consultation and surgery dates! Dr. Heinle is the interim chief of surgery, and we were told last week that he had no openings until October, so there was no way we would get him. Honestly, I am totally comfortable with ANY surgeon at TCH -- the more I research, the more impressed I am with every single one. I don't think you can be a surgeon at TCH unless you're the bomb. Heinle's coordinator mentioned to me that he has moved a lot of things around to accommodate us, and I'm so thankful to him and to the other people on our team making that happen. We will have a consultation with him Wednesday morning, and Sunley's surgery will be sometime on Monday, the 11th (a week from today). Yikes and Yay.

I am relieved and completely horrified at the same time. But mostly I'm happy for Sunley, and glad that her body is finally going to get the help it needs. Just in the last 2 days I've watched her start to really struggle, and I've watched my perfectly pink baby turn slightly blue over and over. It's so hard to look at her and know that she's going into heart failure one day at a time. As much as I hate seeing her body start to give in to her CHD, I needed to see it -- It makes surgery finally FEEL necessary. I wish with every cell in my body that this was the only surgery she needed. It's incredibly heavy knowing that this is just the beginning, but I know we can get through it all. I never dreamed I'd be able to handle this, but then that's the promise of God in Philippians 4, so I guess I shouldn't be surprised that we are doing ok with everything. She's been at home for just over a month -- Thank you LORD -- and we've had that time to really focus on our family and spend time together, which makes these hurdles just a little less stressful. We're as prepared as we can be, and now it's time to kick some CHD bootie.

I would love some more song suggestions if you have some! Music has been so healing anytime I'm going through something, and it's never been more healing than now. I think I may make a list sometime of the songs that are getting me through the year. This song has been on repeat since my friend, Julie, sent it to me last night (link below). And, by the way, you haven't really lived until you've sung this at the OKC New Year's Meeting with about a thousand other Christians. Just saying. This is one of those songs that I can picture us all singing/chanting as we make our way through the gates someday. Can. Not. Wait. #bestdayever

Ready for 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 the game plan is to have a PA banding, Glenn, and Fontan (a series of 3 open heart surgeries). 

Sunley Summit has been home for almost a MONTH now! There are just no words to express how intensely grateful I am for these weeks of normalcy. No monitors, needles, or special treatment (besides a very small diuretic dosage and weekly doctor’s appointments). No scars, beeping monitors, or sore backs from a hospital chair. The roller coaster of emotions I go through each day are nearly impossible to explain. I can feel so many contradicting emotions at once. I feel completely fine and normal all the time, and also sometimes sickeningly frustrated, or homesick, or guilty. (Always tired, but that’s expected with any number of small humans in the house.) The only way I can try to explain those moments of grief is like running a complete sprint straight into a brick wall, then immediately standing up and running again, knowing full well there is another brick wall coming. I’ll be doing something completely normal and not thinking about anything Sunley-related, and then all of the sudden I remember the stupid, stupid CHD and I feel everything at once. Physically, it feels very heavy, makes me lose my breath or close my eyes, and then it’s just gone and I go back to what I was doing. I kind of wonder if those moments will ever stop, but I suspect they will just get less frequent and easier to deal with. I don’t really cry very much anymore, and when I need to I can usually reserve it for when I’m alone (which with 3 kids is only when I take a shower). I guess I’m still in this very stressful situation, but it really has started to feel very normal, which I’m grateful for, and which other heart moms assured me would happen. I know people probably look at our life right now and feel sorry for us, but we really are very happy still. We just also have this huge thing happening that we need to get through. I’m so happy that Sunley has made it five weeks with no surgery, but now her body just needs some help.

We had a cardiology check-up today, and despite feedings every 2-3 hours and adding formula to her breastmilk, Sunley just can’t gain any weight. She is only an ounce over her birth weight, making her 7 lbs 2 oz. Her cardiologist is confident that her breathing and weight gain will drastically improve after the PA banding surgery, so it’s just time. The doctors would love for her to be 8 pounds before surgery, but obviously that’s just not going to happen. We’ve prayed for all of her medical decisions to be obvious, and once again God has answered that prayer: Sunley is very obviously ready for surgical intervention.

Next week, we should hear from the surgeons and get a surgery date. The recovery period for a PA banding surgery SHOULD be about 5 days, but every heart baby is unique, so that could definitely vary. We were told today that her surgery will be sometime in June, and hopefully within the next couple weeks, but we have to see when they can fit us in. I’m getting a lot better about being pushy and asking difficult questions with the doctors, which is beyond uncomfortable for me. But everything about all of this is uncomfortable, and I’m getting used to finding my groove in awkward situations. Insert shrug emoji. 

We’ve had a really great last few weeks. A few highlights:

Sunley got to go to church on Mother’s day, and we’ve been to every service since, with all 3 kids in tow – makes my heart so full! 

We got visits from family and friends!

Ruger had his second birthday.

We had a play date at the Spradley’s, complete with blackberry picking.

So many snuggles and so many fun days!

The older kids are constantly on my mind as well. We got to have Derek’s mom here for the last 2 weeks while my mom went home to Midland and they went swimming I think every single day. I’m so glad my mom got to be home for a little while (especially since her mom ended up falling and needing her—long story, and she’s doing much better now, thank you Lord!) and I loved seeing Sunley getting to bond with Derek’s mom :) I’m desperately trying to give everyone the attention they need, and trying to keep the house <relatively> clean, etc – and having live-in help has been amazing. But no matter what I do, something is always lacking (usually kitchen-related). Even if we’d had a healthy baby, I think this would be the case. Life is just never going to be perfect, and that’s ok. Everyone is happy and taken care of right now, even though nothing is getting my full attention. This blog post has taken about 4 hours to write, due to the LIFE that 3 kids bring into a house, so if it’s all been a bit scrambled, sorry-not-sorry. Repeat shrug emoji.

There are literally a million different possible outcomes for Sunley, but I’m praying for less worry, more happy. I’m praying for her doctors, for her body, for her siblings, for our marriage, for patience, for strength, for clear decisions, for the complexities of all the decisions to be made in the fall (kindergarten etc), for a full lifetime with all 3 of my kids, for no more major health issues in our family, for Jesus to return before anything gets worse, for more faith. And the list goes on, as it does for any mother. Please keep praying for us!

Sunley at 3 Weeks Old

Last Tuesday was two weeks that we have had Sunley HOME. Two weeks that we were never supposed to have! Two weeks of a very normal newborn period – Feedings, diapers, playing with big brother and big sister, and lots and lots of pictures. Thank you Lord! She is now just over 3 weeks old.

Last Thursday, Sunley had a follow-up with her pediatrician, and Dr. Smith expressed some concerns about her weight gain, liver enlargement, and what seemed to be “hard breathing.” She told us that it was definitely time to see the cardiologist, and wouldn’t have been surprised if Sunley was admitted. It totally burst our bubble, and was a sharp reminder that even though she appears so healthy, her little heart is just not equipped to do what it needs to do. Dr. Smith had me up her feedings back to every 2-3 hours, which is not fun after getting used to a 3-4 hour schedule.

The next day (Friday), we had an appointment with her cardiologist, Dr. Ayres, who hasn’t seen Sunley since she was in the womb. It was SO great to see Dr. Ayres again, and she was so happy with how Sunley is doing. She said she was expecting to see a very different-looking baby, and was very happy with Sunley’s pink skin, respiratory rate, and wasn’t too concerned with her weight. Sunley’s heart is enlarged, and her body is experiencing some increased blood flow, so she’s now on a very small dosage of a diuretic. That should help with extra fluid and with liver/heart enlargement, but will unfortunately also cause some weight loss.

This past Tuesday we had a follow up appointment with the pediatrician, and even though I’m feeding Sunley as much as humanly possible, she had lost 2 ounces since last time, which puts her back at her birth weight (7 lbs 1 oz). The pediatrician talked with the cardiologist and decided to start putting some formula in bottles of breastmilk to try and up her calorie intake. Sunley’s little body is just working so hard that she’s burning more calories than I can make for her. Plus, girl’s got some skinny genes running in her family – Derek and I were hardly even on the growth chart growing up. 

All of those issues are signs of congestive heart failure, but she’s not quite ready for surgery yet. A PA banding surgery is extremely difficult in that it’s not easy to see how tightly to band the PA. We have to wait until the PA has lost its pressure, otherwise the surgeons won’t be able to get it right and the whole thing would be pointless. Even if we go in at the perfect time, she will be asleep during the procedure, totally relaxed, so there is still an element of a judgment call because the heart won’t be acting completely normal under such “chill” circumstances. 

It’s pretty tough knowing that we will reach a point where we just can’t give her what she needs to survive anymore, and knowing that we will see her start to struggle before she can thrive – let alone knowing the pain she will go through with 3 open heart surgeries. Having her home is so wonderful, but it will make it even more painful when we have to take her back to the hospital.  We have another pediatrician appointment in a week to check her weight, and in two weeks we will have another cardiologist appointment as well as meet with her surgeons. We were told to expect to set the surgery date at that appointment…but nothing has gone as planned, so we’ll see!

Things are just starting to feel a little abnormal, with the frequent dr appointments, the new medication, and Sunley’s trouble with weight gain. As hard as it will all be, I think when it’s time for her surgery we will all be a little ready to get it over with. The day-by-day nature of all this is pretty exhausting. Still, I’m so grateful that we have been able to postpone her PA banding surgery as long as we have – She’s had so much time to bond with us, get stronger and older, and we hope this will mean an easier recovery in the long run. 

Praying for weight gain and clear answers in the next couple of weeks.