What the Lord Has Done in Me

*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) and Double Outlet Left Ventricle (DOLV), which is incredibly rare. What should have become a right ventricle is just a strip of tissue in her heart near her aortic valve.  Her prognosis has many unknowns, but we are very hopeful for her future. 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 plan is to do a total of 3 heart surgeries (PA Band, Glenn/DKS, and Fontan). 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. We moved from Midland to Houston on March 7th, 2018 and Sunley was born the next month. Sunley spent her first 6 days in the NICU, went home (Houston home) for a while, and then spent 26 days in the hospital after her first surgery (PA Banding) at 6 weeks old. She had a one week hospitalization for dehydration at 4 months old, then went home for a month. At 5 months old, she was hospitalized for low saturations for 5 days, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy). On November 6th, Sunley had her second open heart surgery, which required bypass: a Bi-Directional Glenn and DKS procedure, and incredibly went home only six days after that. We had to stay in Houston until after her Glenn recovery. On January 7th, when Sunley was 8 months old and after exactly 10 months away from home, we returned to Midland with ALL 3 of our kids!

It is no coincidence that I haven’t updated the blog since our kids arrived in Houston. Life would be just completely insane with 3 healthy kids, let alone a heart kid, a move, a holiday trip, and two major illnesses.  It has been a year since we started this CHD journey of ours, and what. a. journey. And we are just getting started!

After spending Thanksgiving apart from our kids, we were all FINALLY reunited in Houston in early December. The five of us had not been together since Labor Day weekend. That was, of course, not the plan. Originally, we had planned to bring the kids to Houston every other weekend. Every single time we made those plans we had some type of issue — either Sunley went to the ER, or one of the kids was too sick to let them be around Sunley — and we kept having to postpone the trips. While that period of time was heart wrenching for us, the kids really did great with it all. They lived with my mom and dad and really thrived in the routine that was set up for them, so that helped our momma and daddy hearts. 

The biggest news is that we all were able to LEAVE Houston! We had planned on going to Midland the day after Christmas, but (long story) had to cancel that trip due to a scheduling issue for Sunley’s RSV shot, Synagis. This shot is only available for high risk babies like Sunley, who would be in a VERY dangerous spot if they contracted RSV. It is not a vaccine, so it doesn’t keep her from getting RSV, but would help her fight it if she caught the virus. I was told by one of the TCH doctors that RSV is one of the top killers for single ventricle babies after the Glenn. Needless to say, we did not feel comfortable leaving until she had that in her system. 

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A few days after her Synagis shot, we went to Oklahoma City for a short trip. Some of you may remember that we started our long diagnosis process just a few days before Christmas last year. We annually go to the New Year’s Meeting in Oklahoma, and it is always an incredibly encouraging experience. We haven’t missed a year since we met in 2006, and I look forward to it every year. The last night of the meeting is spent singing gorgeous a cappella hymns from memory, and it’s about the closest thing to heaven you’ll find on this side of reality. Last year, we attended with heavy hearts as we wondered what New Years would be the next time we were there. Would we even be able to go next year, or would we be in the hospital? Would our baby be delayed or brain damaged from her surgeries? Would we even have all three kids next year? The entirety of 2018 was spent focused on our kids and the impact that this diagnosis has had on our lives. I couldn’t help but have the goal of attending the meeting with our sweet heart warrior in our arms, and I was ecstatic that she was cleared to leave in time to attend. While her journey this year was very successful, we understandably had some low points. I will always remember long hours spent in the hospital trying desperately to console a baby in pain, while dealing with wires and tubes and following sternal precautions. It’s not easy trying to snuggle a baby in that position, and so sometimes I would just put an arm under her, my face by hers and sing, and picture us all together, singing at the New Year’s Meeting. It was really more to console me than for her, to make me feel like I was doing something to help. More often than not, the song I would sing is called “What the Lord Has Done in Me.” It has this gorgeous chorus that, for me, turned into a chant during some of our roughest days — some in the hospital, and some at the apartment missing my bigs and worrying about the future. This song became the anthem for my spirit over the last year. 

So fast forward to New Year’s at the meeting, which felt like an incredible victory lap for us. Last year we arrived in Oklahoma with a big belly and a scary diagnosis, and now we are here with an incredibly smiley, NOT delayed, gorgeous little baby, and our two big kids, all together again. I am already overwhelmed with thankfulness, but when we walked in to this auditorium of 900+ people it really hit me how MANY people care about my kids. We had complete strangers coming up to us just to tell us that they had been praying for her. Tons of young kids wanted to see her, several sweet friends that we haven’t seen in a year, and even family members that hadn’t met her until then. Of course, we were unbelievable germaphobes while we were there, only went to the last service of the meeting, and only let 3 or 4 family members hold her. Remember the a cappella singing I mentioned on the last night of the meeting? It’s always very old, very traditional hymns because it’s all from memory. Two friends of ours, Tara and Jeremy, printed out copies of “What the Lord Has Done in Me” and passed them out to all 900+ people there, and we sang it that night. I shouldn’t say “we.” The auditorium sang while Derek and I boo-hooed through the whole thing. At the top of the sheet music was a paragraph about how this was Sunley’s song all year, and I just about fell on the floor when I heard that chorus. It’s hard to explain to people because it’s just such a unique experience that we’ve had, but I truly think that was probably the happiest, most victorious, spiritually deepest moment of my life. Everything felt very full circle, and I felt so incredibly loved and humbled that so many people genuinely care about Sunley and our whole family. I know I will never have another experience like that, and I know I will close my eyes and relive that moment over and over for the rest of my life. The sheet music is now framed in my house (Thanks Mom!), and it will always hang proudly on my wall.

Because I haven’t cried enough, our church in Houston also very sneakily learned this song without us knowing, and sang it for us on what should have been our last Sunday in Houston…Unfortunately, we didn’t go to church that day because Sunley had a bad cough. They recorded it for us and just sent me the file today. I have no words. These people are just amazing.

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The thing about having a baby like Sunley is that heaven just feels closer now. I constantly feel like we are “almost there,” even though I actually have no idea how much longer we all have in this life. It’s a wonderful feeling to have. Since being removed from the world for so long, we have really slowed down our pace and focused on really simple things. I can honestly say that life is better now than when I thought all 3 of my babies were healthy. That’s crazy right? A year ago, I would have looked at a heart mom and felt sorry for her, but trust me when I say I do not need any pity. I’m a happier person, a better mom and wife, and most importantly I’m closer to God all because of some really terrible circumstances. We are definitely not done with Sunley’s heart journey, and I don’t know how or when it will end, but we are officially done with phase one, and it feels good!

After Oklahoma, we went back to Houston for a few days to start the packing for the move to Midland. We wanted to space out the trips a little bit to give us a break, but also to be back in Houston just in case Sunley caught anything at the meeting. We had our heart buddies over one last time on Saturday night for what I now call a “half-hearted breakfast feast,” and it felt bittersweet. We miss them so much, and we are all anxious for those two babies to go home. This year would have been VERY different without these other parents, and by different I mean about 1,000% less fun. The only down side to having our kids back with us (if there really was a down side) was that we couldn’t just get together with them anytime, and we have really missed that connection. God absolutely wanted our paths to cross, I have no doubt, and I’m so very happy that they did. We had a really great “Last Supper” with everyone, and I DIDN’T EVEN CRY. Later that evening, Sunley started coughing. 

A week before the meeting, I had come down with a horrible cold. I did my best to keep away from Sunley, but any mom understands, when you’re sick, you don’t really get to be sick because you’re a mom. Long story short, Sunley definitely caught it. We left for Midland on Monday January 7th, even though Sunley had a cough, and we hoped it wouldn’t turn into anything serious. Thursday, I finally took her to the pediatrician because it was getting worse and worse, and looked like we may need to head to the ER over the weekend. Turns out, Sunley has RSV — The one specific virus we were warned about. The pediatrician told me not to panic, and I laughed out loud and said, “You don’t understand; I don’t panic anymore. My brain is so far past panic, all I have left is a calm ‘Let’s see what happens’ shrug.”

Praise the Lord Sunley had the Synagis shot before we left Houston, because she has amazingly stayed out of the hospital throughout the virus. I can’t get people to understand how amazing that is. I don’t think I know a heart baby, especially single ventricle, who has managed to get through RSV without the help of a hospital visit. I actually don’t know many HEALTHY babies who can stay out of the hospital with RSV. We are pretty ecstatic that she managed to do it, and very thankful for the prayers and especially for the advice to get the RSV shot! You better believe we will never miss a dose of that liquid gold. Ruger and Derek now have the same bad cold that Sunley has, but those two have, like, WHOLE HEARTS, so they’re doing just fine :)

We have been in Midland now for one week, which has flown by already. Driving into Midland and seeing all the familiar places was a little tougher than we thought — I think it just was the first time we really had to look at and confront what we lost when we joined the CHD world. We are so happy that we get to move forward with some sort of new normal, but the emotions are complicated. It’s not exactly like returning home, because of course we aren’t in our house and we just aren’t the same people who left. It feels so good to be near family and our church family again, but we also really miss Houston, and mostly I think it’s just hard to move forward when there will always be so many unknowns for our future as a whole family. I think because SO much has changed in our lives, we both still feel a little misplaced, and it will take time to find a new groove yet again. I’ve driven by our old house a few times which just really tugs at my heart strings — I REALLY loved that house. But, duh, we have SO much to be grateful for, and that’s what we choose to focus on each day. All of 2019 will be a rebuilding year for us, and we are taking everything one step at a time!

Six Day discharge and Thanksgiving

*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. Actually, the “right ventricle” is really just a small strip of tissue, so there is debate about classifying her as Double Outlet Left Ventricle as well, which is incredibly rare. 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 plan is to do a total of 3 heart surgeries (PA Band, Glenn/DKS, and Fontan). 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 (PA Banding) at 6 weeks old. She had a one week hospitalization for dehydration at 4 months old, then went home for a month. At 5 months old, she was hospitalized for low saturations for 5 days, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy). On November 6th, Sunley had her second open heart surgery, which required bypass: a Bi-Directional Glenn and DKS procedure, and incredibly went home only six days after that. She is currently 16 days post-op from that very invasive surgery.

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SIX days post-op and we were discharged. Amazing. Saturday, November 10th, we were able to move to floor 22, and after tweaking her meds just a bit, we got to go home on Monday, November 12th. She was sent home on Aspirin, Enalapril, Lasix, Hycet, and Tylenol. She hasn’t had a headache in 2 days now, so she is only occasionally getting Tylenol now, and hasn’t had Hycet in several days. It has been ROUGH having a baby so fresh from surgery home, but of course we are glad that she’s done so well. It’s been rough because she is incredibly grumpy, clingy, and eating like a HORSE (which is fantastic to see after 6 months of feeding struggles). Pre-surgery, Sunley ate about 750 mL’s per day, and now she eats about 1100 plus three avocado feedings. She is quite obviously putting on weight, but of course I have been conditioned to worry about fluid retention when I see weight gain, so it’s hard to let myself get too excited about that. The Glenn headaches are so hard to watch —she would just cry and grab her head with both hands. But I think we may be done with those, finally! Each day has gotten slightly easier, but she’s been waking up multiple times a night, and just never wants to be put down. Let me be clear: Sunley NEVER wants to be put down. If her butt touches the bed, she cries. If you get up and walk away to the trashcan to throw out a diaper, she cries. It’s been unbelievably exhausting, but each day gets about 2% better…so by that estimate, in approximately 50 days, I think we’ll be back to normal.

We really don’t have the heart (no pun intended) to let her cry it out at all, but maybe in a few weeks when we feel more confident that her DKS and everything has healed more completely we can try some gentle sleep training. To put into perspective how ridiculous her 6-day discharge was, I drew a before and after of her heart pre-surgery compared to after the Glenn and DKS.I’m assuming this is accurate, but a heart surgeon could probably see some flaws!

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It’s hard to believe how quickly she progressed. Below are some photos from the evening after her surgery, and the days following. I know that to a lot of people this may be hard to see, but we couldn’t believe how GOOD she looked! I was so glad she was able to be closed, and we couldn’t believe how pink she looked. Since being extubated, she’s actually become slightly more cyanotic, but I’m looking forward to post-Fontan pinkness someday! One of the sweet nurses already had her name drawn on the board when we got there. Little things like that go a long way for parents! Also, do you remember how last time we were inpatient, I had to take down all my decorations, and I was super sad about it? Well, I heard a lot of reasons, as far as that paper and tape were a bacteria hazard, so I bought page protectors and suction cups, and voila! Interesting fact: I asked the nurses about it this time, and no one knew what in the world I was talking about. Sounds like just some normal growing pains with moving to a new tower — not everyone is on the same page with new/old rules. Moral of the story is, I got to decorate :)

While we are so happy with Sunley’s progress, we did have some bad news the day of discharge. Her last echo showed a weakened squeeze from the front portion of her only ventricle, and she had some mild pulmonary valve regurgitation. Neither of these things were issues that should keep her in the hospital, but it’s something to watch in future checkups (Next checkup is November 28th). Because of this, her sats are lower than we’d like (again, in the low 80s this time). No one can tell us what will happen in the coming years, but of course I’m concerned about that weak squeeze, concerned that the tissue below her aorta will continue to build up and cause problems, etc. It’s frustrating to look at her and know that at best, she will always only be well enough to not be in the hospital; she will never be WELL. The best phrase I’ll ever get to use concerning her health will be “She’s doing well for right now.” But who knows? Maybe we’ll get to be in that space for decades before encountering any major issues :)

On a brighter note, we are feeling like we’re SO close to going HOME to Midland!! Home by Christmas feels like a solid possibility, and we can’t wait to have our family back together. We were planning on trying to get our big kids here for Thanksgiving, but they have both been sick, and we just can’t risk Sunley catching anything at all right now. It breaks my heart, but we are going to have a second Thanksgiving in January, and I think we might make that a permanent tradition. There really aren’t words for how much I achingly miss my kids, but it is what it is, and it’s almost over, Lord willing. The coming 2019 will be the rebuilding year for the Nichols clan, and I can’t wait to get back to being my kids’ parent. Someone will probably need to remind me of this when I start to potty train Ruger.

While I’m completely OVER being away from home and away from my kids, a part of me is absolutely dreading returning to our everyday life. Everything has been completely paused for us, and I’m not really sure anymore how to not be in and out of the hospital, or how to interact with people outside of the hospital. Mostly, I am just really going to miss the friends we’ve made here. God didn’t answer our prayer of complete healing for Sunley, but He did send us into the arms of some pretty incredible heart parents who have uber-quickly become lifelong friends, as well as a couple doctors and nurses who made this whole thing bearable. Those friendships have made five separate hospital stays FUN. WHO says that?! Of course, no one wants to see their children in the hospital, but we are so blessed to have some actually really great memories accompany the hard ones.

I’m also really grateful for how much this journey has forced my brain to slow WAY down. I miss traveling and shooting weddings a whole lot, but I’ve been able to spend time with other creative outlets that I hadn’t before, and it’s all just for me, with no deadlines. I’ve written a ton of poetry and lullabies that’s just for me and my kids, I’ve been doing some watercolor just for fun, and of course I’m still editing photos (just not getting paid for them, ha). It’s been kind of fun to just let myself be a mom and an artist and not have to find a working balance between the two. I’ve been singing Sunley a short little song I wrote the day of her surgery, when we found out that the DKS was a real possibility. I was super worried about her ability to recover from such an invasive procedure, especially considering her issues with a previously weak squeeze, and even though it probably sounds morbid to a lot of people, this little song made me feel a lot better, and still does. Also, if you feel like this is dark, then just consider the lyrics to Rock a Bye Baby, and it makes this song sound like Happy Birthday ;)

If you take her, take her peaceful

Do not let her mind be fear

All I want is to see her smiling

All I want’s her to know You’re near


If you take her, take her laughing

By the ocean, bright and sunny

Feeling sand and watching sailboats

With her sister and brother running


If you take her, then take me also

For I don’t like this world alone

But if I stay while she leaves smiling

Then give me grit while we wait for Home

I am very sad to not have my bigs here today for Thanksgiving. Of course, we got about 5 different invitations to spend today with other families because we are surrounded by the sweetest people. But we just decided to spend the day with our small little unit, make chili dogs, and thank the Lord that we got to keep this little drop of sunshine in our lives <3

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Bi-Directional Glenn and DKS Post Op

*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 plan is to do a total of 3 heart surgeries (PA Band, Glenn/DKS, and Fontan). 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 (PA Banding) at 6 weeks old. She had a one week hospitalization for dehydration at 4 months old, then went home for a month. At 5 months old she was hospitalized for low saturations for 5 days, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy). On November 6th, Sunley had her second open heart surgery: a Bi-Directional Glenn and DKS procedure. We are still inpatient and recovering from that.

First of all, PRAISE THE LORD. I am constantly just humbled and have been literally brought to my knees thinking of all the prayers said on the behalf of our little family. I won’t try and thank all of the individuals that have been there for us all year long, but I do have to say thank you a million times to my parents and to my aunt, who is keeping our older two kiddos while we deal with all of this. My aunt is filling in for my parents so they can be here with us, along with Lonnie and Tonya, who came for Sunley’s surgery. The love that believers have for each other and for my sweet baby has been so uplifting and unifying, and I am so in awe of how much love we have received through encouragement and prayer. God is constantly blessing us not only with good physical outcomes for Sunley, but with new encouraging relationships all across the world.

Whew. It’s been quite a whirlwind over here! I’m not really sure how to get all the info in here, so I’ll just give a summary of each day:

Monday, November 5th

We arrived to TCH at 8am to start the very lengthy check-in process. Sunley had to be cleared by several doctors to make sure she didn’t have a runny nose, fever, ear infection, etc. It’s been a long month getting ready for surgery, keeping her almost completely quarantined so she didn’t catch anything that would bump her surgery date. This also means that the kids couldn’t come visit, and that was the hardest part. I finally just HAD to see them, and went to Midland for a quick weekend trip at the end of October. They haven’t been to Houston (haven’t seen Sunley) since September 3rd (Labor Day weekend). We finally got a room on one of the step-up floors, room 2309, and stayed there overnight. We must have had a brand new nurse (since Sunley was obviously the easiest case on the floor), because I had to show her how to do just about everything, including put on a posie over Sunley’s pulse ox. It was no biggie since Sunley really didn’t need any nursing care, but I am hoping we get a more veteran nurse next time we’re there post op. Sunley got A LOT of snuggles from all of us (both sets of grandparents are in town for surgery). Getting ready for an early day tomorrow — Surgery is set for 7:15 am. She will go NPO after 3am, which really isn’t too bad. I requested that we stop fortifying her breastmilk bottles to see if we can gain weight post Glenn without the help of formula. Not sure how well we will sleep tonight, but I’m ready to get this over with!

Tuesday, November 6th

Grandparents came in early for one last snuggle, and we’ve been rocking her ever since. Surgery got delayed just an hour, but that’s kind of a long hour when you have a hungry baby. 

When we got back to the holding area, Sunley’s whole team was ready for her, including Dr. Ayres (her cardiologist) who made sure she got put on Sunley’s surgery today, even though she had 3 patients going in. She has made us feel SO confident the whole time we’ve been here. Sunley got some last snuggles and kissies, and we gave her a light sedative to help her zone out, since she’s been starting to feel some stranger danger lately. Watching her drift off made me more relaxed, too.  

We LOVE our anesthesia team! Sunley had the same anesthesiologists that she had for her PA band surgery, so it was great to see them again. (Heart kids have anesthesiologists that are specific to cardiac care. Primal Trivedi and Eugene took her back, and Eugene picked her up and put her on his shoulder and said “I’ll take of your baby” as he walked away. He’s everyone’s favorite anesthesia fellow because he’s always so kind and gentle with the babies. 8am: Sunley went back to the OR, and they said to expect an update in about an hour/hour and a half.

Unfortunately, it sounds like Dr Heinle will most likely be doing the most invasive option, the DKS procedure, along with the bidirectional Glenn, but the final decision won't be made until he gets in there to inspect the aorta and pulmonary arteries, and their valves. I'm so grateful for the team of doctors that we have, and I know that they will make the right decision. Surgery will last between 6 and 15 hours. We were previously hoping to get through the Glenn without stopping her heart, but that is no longer an option, as her atrial septum needs additional opening.

10:30 am: Our first update from Deanna - They've started the incision. She has her lines placed and is doing well. The TEE took a while because there is A LOT of debate on which option is the best option for Sunley long-term. Still leaning toward a DKS but Dr Heinle hasn't officially decided yet. Dr. Ayres and Heinle discussed both options for a really long time, but ultimately it’s just a (very) educated guess as to what will be better for her in the long run (which is why it MATTERS to which hospital you take your kids!). 

Update #2 at 1pm: Officially on bypass.
Update #3 at 2ishpm:
Her heart has been stopped for a while now. They are officially doing the DKS. We are pretty bummed out that she needed that option, but we are grateful that they saw whatever they needed to make that decision, hopefully avoiding extra surgeries in the future. (She will, of course, still have a Fontan down the road). Her heart will be stopped longer than we wanted, but as soon as the DKS is completed they will restart the heart (she will still be on bypass though) and proceed with the Glenn.

Update #4 at 3 pm:

The DKS is completed (that was fast!) and Dr Heinle is beginning the bidirectional Glenn. The heart is still stopped but will be started again after the atrial septostomy is completed (I think).

Update #5 at 4pm: 

Once again, they underpromised and over delivered on the time estimate: Sunley is DONE with her surgery! Her heart is beating, she is off of bypass, and her function looks great. They WILL get to close her chest! They are just about to close. Praise God!!! Now we are very anxiously awaiting the next few days of recovery to see how her heart does with this crazy new physiology.

Last update at 5.15:

She is closed and headed to her room. We should see her within an hour. Of course she is intubated, and hopefully we can extubate soon.

Overall, the surgery time from going under to being closed up was around 8-9 hours. Dr. Heinle came to talk to us after it was done, and when I asked him how long she was on bypass he didn’t even have to think about it and said “She was on bypass for 161 minutes, and had her heart was stopped for 57 minutes.” I also asked him if there were any unexpected issues during surgery, or any delay in getting her heart started again, and he said no. I’ve learned that you have to ask these things, as that information is not always offered —although I think Dr Heinle goes into more depth…or maybe I just ask too many questions ;) We are all extremely happy with the outcome, but with such an INVASIVE procedure, we are expecting a slower recovery than originally thought.

During surgery, our parents sat with us, and we hung out quite a bit with Leslie and Brian (Oliver’s parents). We sat with them during Oliver’s surgery and played board games, so it was great to get to do that all again. We also met another sweet couple who has an adorable little girl HLHS interstage. The friendships we’ve made here have been such incredible blessings!

6.30pm: Mommy starts asking to see Sunley, since there is a history of nurses/doctors forgetting that we are waiting anxiously outside the rooms. Within five minutes of asking, we got to go back to see our girl. We were happy that the surgeons were able to close her chest. She is of course intubated, but all of her vitals look good. I’m shocked that the doctors are discussing possibly extubating her tonight. I’m wondering if that’s a little soon, so we discuss it, and get to a good decision of being open to it, but not pushing the extubation. Derek and I are sleeping in the Ronald McDonald rooms tonight in the hospital to get away from the monitors and busyness of the CVICU. Sunley is in room 1803. (We were hoping to get next door to Oliver on a different floor, but oh well!)

I had a list that kept track of ALL her meds aaaaaand I accidentally deleted it. SO bummed about that. I remember that she came out with one chest tube (glad it was only one, as we were expecting two), an IJ line (Glenn line through her neck to check her new glenn pressures), two femoral art lines, one wrist art line, an IV in her arm, foley Cath, and temp probe. She was on Milrinone, Precedex, Nitrocardipine, Enalapril, Nitroprusside, Nitroglycerine, of course TPN and lipids. There may have been other drugs but I can’t remember them all. I may go in her chart sometime and look art them all.  

She still looks pretty swollen in her head, and I’m sure will have some Glenn headaches as her body gets used to this drastically different physiology. But for now, she is sleeping hard and stable. We don’t care about the election.

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November 7th

Sunley had a great day today! She was extubated in the morning to high flow 8L at 100%, and is down now to 75%. She SAT up like a FREAKING SOLDIER less than 24 hours after her heart was stopped and chest open on a table. Everyone is AMAZED by her progress, and a couple of doctors have said that they’ve never seen a DKS/BD Glenn do this well so soon after surgery. I’m excited, but I kind of have that pessimistic feeling like I’m waiting for something to go wrong. Sorry. Can’t help it. Her Glenn pressures had a couple spikes, but none of us think they were accurate reads, and the numbers have been stable otherwise. She also got one of the fem art lines out, and did an oral feed of 30mL! She’s pretty amazing, and the prayers are definitely working! We had one of our favorite nurses today, Marty, and we are so grateful for such a great day!

November 8th

Sunley stayed stable through the night. Glenn pressures are perfect, so we took out the IJ (the one in her neck). She has more pain today and won’t let herself cough, so she has some gunk building up that may need deep suction later. We ended up giving Sunley some Dilaudid and Hycet today to help her with the pain. This afternoon her blood pressures started going up higher and higher and higher. They got up to about 149/67. The whole time they were climbing, I could tell our nurse was getting nervous, and our attending was busy with an emergency so no one was coming. Also, the BP was NOT due to pain —Sunley was sleeping comfortably, and we tried every limb, a new blood pressure cord, etc. It was a REAL high BP. Momma bear was starting to come out and I finally told our nurse I would wait ten more minutes, then I’m going to find someone (I mean, how many doctors are in this building right?!) I was staying pretty calm until our attending finally came in (understandably flustered from the emergency next door) and called her a “he” (also understandable, there’s lots of babies here), and then started telling me that this is “totally normal, especially because his [HER] heart had a big change since the NORWOOD.” And Sunley didn’t have a Norwood. I got pretty upset because I felt like not only was he not concerned enough, but he clearly wasn’t even thinking about her physiology. He gave her a dose of Hydrolozine to bring her BP down and told me that everything is fine, and her BP will be back to normal range within ten minutes. FORTY minutes later, Sunley was still having super high blood pressure, like 130s systolic, and I was FRUSTRATED. The doctor ordered more Hydrolozine but never came back by…pretty sure he didn’t want to admit he was wrong. I really would have been calm had he taken me seriously, but I think the more he tried to downplay it, the more worked up I became —and the more worked up I was, the more he tried to downplay it. It was not a fun afternoon. We stayed in her room, until her blood pressure got to about 112 systolic consistently (Ideal is under 100). So it is still high, but we feel good about going to bed since she’s not in the danger zone anymore.

I found out later that high blood pressure is actually even more dangerous than I thought for a DKS-er. Such a fresh DKS can leak if the BP gets too high. Really not happy with how the attending handled it, but the important thing is that we are moving in the right direction now.

November 9th

I woke up knowing that the doctors were going to totally downplay her high BP from yesterday, in hopes of moving us to the step-up floor. Derek ran into one of our favorite doctors when he was getting coffee, and mentioned the high BP and they told him that No, that’s definitely NOT normal and not ok. We had a great nurse yesterday and today, and she’s helped me feel totally validated with my concerns. 

Sunley had to be NPO again last night so she could have her pacing wires removed today so she was grumpy when I got here, and of course the doctors ran late getting here to pull the wires, so that was pretty miserable. When they got here, I got to have a good talk with them about the BP concerns (BP was still in the 110s/120s) and again felt very validated in not wanting to move to step up yet.

At rounds, just like I predicted the doctors from yesterday totally downplayed to the team the whole BP thing. They said “Maybe her new normal is just in the 110s” which brings me to this tangent:

When a baby is not hitting the health standard the doctors have set for them, let’s try something to get them to that standard instead of LOWERING THE STANDARD. Tangent over.

At the end of rounds, one of the doctors said that we could move to step up, and I very calmly (not calm in my brain) said that I would feel more comfortable with 24 hours of good BP before moving. The attending basically said that they might need our bed for more critical patients, which brings me to another tangent:

Please do not try to guilt me out of a hospital room for my baby, because I am all too painfully aware of other “more critical” babies, and that’s a horrible reality that will never change. I’ve been guilted out of a room before (remember our wasted hospital week on the Neuro floor?) and it was a HUGE mistake! I really think that’s a cheap shot to just get me to agree with you. And if the brand new tower needs more rooms, lets have fundraisers and get that done, but I’m not moving my kid when my ALWAYS right mom gut says no. Tangent over.

We decided to table the discussion to later in the day. But as the day progressed, Sunley had some still-too-high BP, minor desats, her skin was mottled, hands blue and cold, and she had small spikes in her heart rate (nothing crazy, but still enough to raise concern). Overall, her body told us all day long that we were moving too fast and she needed to slow down. So that’s what we did. Before we left tonight, she was having abnormally low ST stuff (that’s the technical term) so they did an EKG which came back normal. OH! She also FINALLY pooped and it was a DOOZY. We had to do a dressing change on her art line afterwards, and change all the bedding. So happy for her though, haha!

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Today, November 10th

Sunley’s BP finally stayed under 100 systolic all night long. Her heart rate is fine and she was all smiles when we came in this morning which was SO wonderful to see! She is playing with all her old toys and doing all the Sunley things, so it’s obvious that her brain function has remained 100% since having so much bypass/heart stopped. She did struggle with her last 2 feeds, so I’m anxious to see her BUN numbers, because I feel like she might be a little dehydrated. She is still getting some lasix and is her input/output is still negative even though she is all PO (besides occasional Delaudid). If she is dehydrated, I think we can easily get back on track with some IV fluids.

Her coloring is much better, except when she gets super fussy. I THINK the coloring yesterday and for a short time today is from the dreaded Glenn headaches. It seems like her entire body tenses up, which just makes it worse. Hoping those don’t last too long!

We are still waiting on the team to round on us, but I really think they will move us to step-up as soon as a room is available, and I think she is ready now. We just needed to listen to her body telling us to slow down, and that’s exactly what she needed. She will need to get her double lumen fem art line out, and get an IV put in her arm (her first one went bad quickly) so I’m bummed she’ll get at least one more poke. But getting that line out will be good, since it’s very high risk for infection.

Photo of a Glenn headache:

Waiting on the Glenn

*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. She had a one week hospitalization for dehydration at 4 months old, then went home for a month. At 5 months old she was hospitalized for low saturations for 5 days, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy). Right now, we are waiting on her Glenn, which is scheduled for November 6th (that date is not set in stone).

It’s been an uneventful couple of weeks, and I love the word “uneventful.” We check Sunley’s saturations daily now, and they are consistently in the 80s. Praise God! I’m so happy to see those numbers. I’m really hoping we will continue with high 80s saturations after the Glenn. I’ve been wanting to post a video explaining in detail what we’ll be doing in her surgery, but have been waiting on our consultation, which has finally been scheduled for this Thursday. So, I’ll post a video soon!

We were told after our last ER visit to really try and make sure Sunley isn’t exposed to too many germs between now and her surgery (scheduled for November 6th), because even a runny nose could postpone her surgery. I call this “newborn restrictions,” so we aren’t letting anyone hold her, I’m not taking her out much at all except for church, and we decided not to have our big kids come visit (since they both have congestion right now). That was a really difficult decision, and I’m getting really sick of not parenting my kids. Don’t get me wrong, the clean house and napping opportunities are fantastic! It’s getting to the point now though where I can barely get through the day without crying, and I just really need to see them. I went back and forth on whether or not to go to Midland — I’m worried that seeing me will just upset them — but ultimately, I’ve decided to fly in on Friday and leave Sunday, and I CAN’T WAIT!! Sunley will stay here with Derek and a freezer full of breastmilk. I’m really hoping for no more unexpected ER trips, especially while I’m gone. Another concern is, of course, the germs from the airport, so I plan on being the germaphobe on the plane, complete with Clorox wipes.

It was really hard to decide to go to Midland, because I really REALLY don’t want to be there without Sunley. I am desperate to see my kids, but I thought the first time I’d be back would be with my whole family, and doing it by myself and without Sunley is just not what I had pictured. I have missed our church family in Midland SO much, and I can’t wait to see everyone and worship together — but be warned, I’ll be an EMOTIONAL WRECK without my 2 missing pieces! Overall, I just don’t really feel ready to be back in Midland, but this trip isn’t really about Midland; it’s about hugging my bigs. I don’t want to see any part of my “before” life, and I really REALLY don’t want to see my house. I am incredibly homesick for our house. I haven’t lived in it since February 14th of this year, and probably never will again, and I think I really resent the fact that we had to leave when I had just finished drawing the plans for our add-on. I was so looking forward to building the spaces in which my kids would grow up. I was so ready to settle in and plant roots, and we had to just completely let go of that dream so suddenly. I am incredibly grateful that we were able to rent it out, and that money has been such a huge blessing. Still, I miss my funky house, and my lime green front door. For a while here, every once in a while I would grab a shirt to wear and would notice that it still had my house smell (all my prematernity clothes had been stashed in bags for a while), but I’m finally out of those clothes. It’s weird the things that your mind remembers. For some reason, the thing I picture the most is the way my front door handle felt opening my door — How weird is that? My big 2 kids happened to take their first steps in the exact same spot in the living room and I picture that a lot. And I have a vivid memory of painting Hadelyn’s bedroom with my mom when we first moved in. And looots of memories of putting my kiddos to bed — I think about that every night (probably because who DOESN’T love the kids GOING TO BED).

We own a couple rental properties in Oklahoma, and it’s funny to me that right now we have 3 houses and one apartment, but no home. When we get back to Midland, the plan is to live in my parents’ empty rental property while we look for a new home and a fresh start. We finally decided to just keep our house as a rental property instead of adding on to it. I completely agree that this is the right thing for us to do, but I think I’ll always be a little sad about having to leave our first house the way that we did. I’m completely aware this is a classic “first world problem,” but that doesn’t make the homesickness go away. I’m choosing to just focus on loving on my babies instead of being sad or overwhelmed with all the feelings…Maybe if I ignore them they’ll just go away? The feelings, not the babies. Ignoring babies just makes them more tyrranical. I’m usually more upbeat about this whole thing, but I think a family can only take this kind of separation for so long, and I’m about done with the whole thing.

I’m actually not feeling too worried about leaving Sunley, even though I’ve never been more than 10 minutes away from her. I’m worried that her heart will decide on another ER trip while I’m gone, (PLEASE NO) but I can grab a flight and get here relatively quickly if that happens (although I’d be a wreck if it does). Derek can definitely handle her for a few days, and the freezer is stockpiled with milk. I even have some bottles from Oliver’s stash, thanks to his generous mommy — Gotta love milk-sharing! 

On a happy note, we took Sunley to the beach for the first time!! It’s just 40 minutes from our apartment and we went on the most perfect, sunny day :) We are being super germ-conscious right now, so we only stayed for a little bit and didn’t put her in the water, but it was so wonderful and MUCH needed for me. I’ve always said that I think God threw in a little bit of sand and salt water when he created the recipe for my soul, because the beach (ANY beach) is where I feel the most peaceful.

I forgot to mention that we have Sunley down to just ONE medication now! We took her off of Zantac (for reflux) so now she only takes Enalapril twice a day (not for blood pressure) to help her ventricle fully relax in between squeezes. We LOVE only having to remember one med, and she is so good at taking it. In fact, she is the most well-tempered baby! Sunley is all smiles all the time, and rarely cries without good reason. She is SO close to crawling, too! Her 6 month developmental evaluation is coming up on the 25th, but I can already tell you that she’s got no delays (mom-brag), which is such a relief! I really think that’s a result of those first 6 weeks prior to her PA Banding surgery. If you’ll remember, she was supposed to have surgery at 1 week old, and instead got to come home and be a normal baby after just a week in NICU4, and stayed home for 5 weeks! I really think it laid a good foundation, even with 6 weeks of sternal precautions afterwards. Sunley has been in the hospital 4 times, but in between all of those visits has had a very “normal” at-home baby life. She’s also been the center of attention with the bigs gone so much (pros/cons).

Our leftie bestie is set to have surgery this coming week, so be keeping him and his family in your prayers! We’re all hoping the Glenn will give both of these kids better and hardier physiologies to handle baby/toddler life (and its many germs). In our case, we are mainly hoping for stable function and high sats to help Sunley Summit get some good (preferably several) years in before the Fontan.

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