Surgery, etc

I always feel so behind, but I want to record this all here for journaling purposes! My mind feels foggy right now but here goes. We met with the surgical team to discuss the tumor removal. We finally got to see the images from the different scans he has had, and they were super interesting. On his left side you could clearly see his kidney and his adrenal gland above it. On the right there was just the kidney and then another large spot above it, no visible adrenal gland at all. The doctor said it was about the size of a large grape, but that it looked like it would be easy enough to remove. He did need us to do a 24 hour urine collection on Conor beforehand to rule out a certain kind of tumor. He said that while chances were super low that it was that kind of tumor (like 1% ish) they would need to approach the surgery differently if it was, so it was good to know. They sent us home with lots of little urine collection bags and what looked like a milk jug to put it all in for the next 24 hours. Well. Collecting urine from a 10 month old for an entire day and night is about as easy and delightful as you can imagine it to be. Especially since the next day I had to take him back to Baltimore for a sweat test. GI wanted to rule out Cystic Fibrosis as a reason for his lack of weight gain and the sweat test was the way to do that. I got to sit with Conor in a tiny room, right next to a super hot space heater, for over an hour trying to collect enough sweat to sample from him. The technician tried three different spots but was unable to get enough to even run the test. Too bad she didn't need to test me, I definitely had plenty. Extra annoying that we had to do it because the whole trip was a huge fiasco. Because I had to haul his big jug of pee with me I had switched my usual diaper bag out for a backpack. In the switch I had forgotten to transfer my wallet and the wipes. So, of course, thanks to the baggie attached to him to collect his pee, he had a giant blowout as soon as we arrived at the Children's Center. And since I had no wipes with me I got to give him a quick bath in the bathroom sink. Miraculously, I did have another outfit for him! Then I had to call Marc to come bring me my wallet so I could pay for parking.

And after all that, the lab refused to test his urine because they said it wasn't in an approved container. Even though it was in the container that the nurse told us to put it in! To say we were aggravated about that would be an understatement. 

Anyway, surgery was set for the 8th. Poor lad had to come in fasting again, which he was understandably grumpy about. The surgical team said they thought it would be more risky for him to delay the surgery in order to do another 24 hour urine test. They said they called in several more radiologists to examine his scans and felt confident that it was not the kind of tumor the urine test would have alerted them to. 

Had to get my boy a special surgery outfit.

We took approximately 5 million pictures and videos of him while we were waiting for surgery to take him back. Just in case.

The tiny little hospital gown was so cute and sad on him. Luckily they had a super fun play room to distract him from his hungry tummy. 

He fell asleep right before they came to take him back for anesthesia. 

Then we sat and waited for a few hours. We got to sit in the exact same chairs we'd been in exactly eleven months before while we waited for his heart surgery to be completed. Dr. Hackam finally came out and gave us the great news that surgery had gone perfectly and that they had gotten absolutely all of it. One of the main risks for this surgery was blood loss and the doctor reported that he only lost about a teaspoon of blood. So wonderful to hear! Before long they took us back to the PICU to see our boy. He had already woken briefly and gone back to sleep by the time they let us back to see him.

                                               

Sweet boy, I hate seeing pain on his face :(

The rest of the story

So, we met with the eye doctor about an hour later and he told us that he was pretty perplexed by Conor. He said when radiology had originally alerted him to the mass he had them double check that they hadn't flipped the image, since the mass they found is above Conor's right kidney. His Horner's Syndrome presents on his left side, so if there were a neuroblastoma involved in causing it that is the side it should be on. So, this mass has nothing to do with his Horner's. They were looking for a neuroblastoma and they found one, just not where they were expecting it to be. At this point the eye doctor told us that there wasn't really anything else he could do for us, as far as the mass was concerned, but that he had already been on the phone with our pediatrician and that she said she would call us by the end of the day to discuss what needed to be done going forward. He did raise the possibility that it could still just be nothing to be concerned about, but we weren't putting too much stock in that option.

Our wonderful, fantastic pediatrician called us about 6:30 that evening. She had spent the majority of her afternoon talking to pretty much every doctor Conor had ever seen and reviewing the many, many tests he has had run in the past months. She said that originally radiology thought we should take a wait and see approach to the mass but she just wasn't comfortable with that idea and was able to get him in to see oncology on Friday.

Friday afternoon we drove back down to Hopkins to meet with oncology. They drew some blood of their own and tried to get a urine sample and eventually gave us the official diagnosis. He said that we could wait for the blood tests to confirm, but that he was 99.999% sure that Conor has neuroblastoma. He thought that our next step would be meeting with the surgical team to plan to get the tumor removed.

Neuroblastoma is a really interesting cancer. Apparently when it is diagnosed in infants six months and younger it will often resolve itself on its own. Right now the typical approach at that age is to just watch it and see. We were told that they were just starting a study to see if that approach would be safe or effective for babies up to a year, but that Conor wouldn't qualify for it and the oncologist didn't think it was a good idea even if he did. The plan for right now is to have the mass surgically removed. His oncologist said they would remove it as safely and non-aggressively as possible, and that even when they aren't able to get the entire tumor out the leftovers will sometimes resolve themselves without further intervention.

Once the tumor is removed they will send it off for genetic testing. I'm getting fuzzy on the specifics he told us here, but the results of those tests will determine if he needs to have chemotherapy or radiation going forward. If the results are good he will only have a ten-ish percent chance of needing the chemo and if the genetic tests are bad his chemo chances increase to about thirty percent.

This whole experience has been so different from his heart stuff. With his CHD it all happened so fast, we'd only had him home for one night before we took him in to his pediatricians office to check on his jaundice. They sent us straight to the ER, and the ER sent us straight to Johns Hopkins. By the time he was settled in the NICU it was pretty late and then the next morning they told us about his heart defect and that he would be having surgery that same day. Honestly the whole time he was in the hospital it felt like we were watching the whole thing happen to someone else, like we were seeing some other parents hovering over some other sick baby. It was only once we got home and things calmed down that we started to process all the craziness of what had happened.

This time around the whole thing has been a lot slower. We knew there was a slight possibility of cancer when he went in to the MRI. And then getting the email with his test results gave us some time to process that before hearing from the ophthalmologist that it was likely that he had a neuroblastoma. And then hearing that let us prepare even more for getting the official diagnosis from the oncologist. By the time we got that we'd had several days to acknowledge that this diagnosis was coming, though I did feel pretty light headed when the oncologist said "yes, he has neuroblastoma", despite all the time we'd had to let it sink in prior to meeting with him.

Last week Conor had an MIBG scan, which is a nuclear medicine scan where they inject a liquid radioactive material into his arm one day and the next day they scan him with a gamma camera to determine where all the cancer might be in his body. Which, of course, we are expecting and hoping for it to be only where his tumor is. Once the images from this scan are reviewed we will be able to move forward with scheduling his removal surgery.

I took him in on Wednesday to get his radioactive material injected. They started with an oral medicine that was meant to protect his thyroid from being damaged by the injection. The nurse mentioned that it tasted disgusting and Conor certainly reacted in a way that would confirm that! Poor boy, he was not happy about having to swallow it. An hour later they took him back to do the IV medication. The first line they started did not work so my poor boy had to get poked twice. Once they got the line started the medicine took only a few seconds to inject and we were done for the day. They said he was not allowed to go to any landfills or to the White House for the next three days, as he would set off the radiation detectors there. We also were instructed to take his wet diapers straight outside as the radiation would come out in his urine.

Shockingly, he was not a fan of being strapped down like that to get his IV in. I was just glad I didn't have to restrain him this time.

Sweet boy. We took him back on Thursday for the scan and he was so mad and hungry while we were waiting, since he once again was having to fast beforehand. He finally went to sleep while we were waiting to get started.

And that is him knocked out and waiting to be scanned. That is the machine they sent him in to. He looks so tiny on that table! 

We are still waiting to hear the results but have an appointment with surgery this week and are looking forward to soon having a more concrete plan for his treatment. 

Conor Update OR the big long story of Conor's cancer diagnosis.

I am so behind on updating this blog! Conor is mostly to blame for that, he is a little velcro baby and needs to be touching me at all times. We are working on independence, so right now he is sitting on the floor, surrounded by toys and one helpful two-year-old brother, and complaining that he is too far away from me.

Conor got all pumped full of fluids before, during, and after his heart surgery back in October. When he awoke from the anesthesia we noticed that his right eye was opening fine but his left eye was swollen shut. His pediatrician thought it might still just be from his original birth trauma (he broke his left clavicle and his left side was a bit bruised on his way out) and said we should take a wait and see approach, and that if it wasn't looking normal in another month or so she would refer us to an ophthalmologist. Well, the swelling did eventually go down, though his left eye lid remained a bit droopy when compared to his right. His pediatrician said she was not too worried about it, as it was not covering his pupil at all, so was not likely to impede his vision. However, when we had visitors in February for his blessing, my mom noticed that his pupils were dilated to different sizes. After she pointed that out I did some googling of his symptoms and happened upon Horner's Syndrome. The internet indicated that Horner's is caused by nerve damage and that there were three main culprits that damage that nerve: a broken clavicle, CHD, and neuroblastoma. Conor had the first two problems already, so we assumed that was what it was. At his next check up I mentioned the pupil dilation issues and she referred us to an ophthalmologist who confirmed the Horner's diagnosis.

Because Conor had two of the three main causes for Horner's Syndrome his ophthalmologist originally thought we didn't need to bother with an MRI, as it would be unlikely that he would have a neuroblastoma as well. In fact, the specific surgery that Conor had on his heart (left sub-clavian flap repair) was a huge culprit for the nerve damage behind Horner's and his eye doctor thought that was the most likely reason. However, after consulting with one of his colleagues and several of Conor's other doctors, he decided that since Conor had so many little issues (failure to thrive, eczema, milk allergies, a few sketchy lab reports from blood work, etc) that it would be best to do the MRI after all just to make sure. He said even though it was unlikely that a neuroblastoma was to blame for his Horner's it certainly seemed like there was something weird going on with him.

After he told us he wanted us to go ahead with the MRI we had a bunch of communication issues and basically were unable to contact him for almost three weeks. When we finally got the MRI referral from him and called to set up the appointment we were told the soonest they could get him in was the third week in July, or, smack dab in the middle of our family reunion/nephews wedding planned for the summer. We cut our trip as short as we could in order to get back to have him scanned the first part of August.

Now, I am an anxious worrier by nature, but I had been doing pretty well telling myself that the MRI was just a better-safe-than-sorry thing, and he was not going to have neuroblastoma. I was mostly concerned about him having to undergo general anesthesia to get it done.

Marc dropped us off at Hopkins on the morning of August 8th for the MRI. I had one grumpy little baby boy on my hands since he hadn't been allowed to eat anything after 2:45 that morning. Everything went as planned and a few hours later I was holding my sleepy little babe while he finished coming out of the anesthesia. The doctor came back and told us we were free to go home and that the scans all looked clear, but we would need to follow up with his eye doctor that had put the order in. Later that day the results were posted on Conor's online chart for us to see and the report said that they were "normal and unremarkable". I scheduled his follow up appointment for two days later, and we were so relieved to have that whole mess behind us.

Wednesday morning I was hurrying to get us all ready for Conor's appointment. I had decided to just chance taking all three older kids with me, figuring it would be a fast in and out appointment to go over his all clear results. Right before I got in the shower I checked my email and saw that Conor had a new test result posted on his chart. I clicked the link and saw that it was a new MRI result. I opened that to see that they had indeed found something after all. The words "Imaging of the upper abdomen reveals a rounded, well-circumscribed right suprarenal mass demonstrating intermediate T2 hyperintensity measuring approximately 1.3 x 1.2 x 2.2 cm." jumped out at me. And then, more concerningly, this sentence "THIS REPORT CONTAINS FINDINGS THAT MAY BE CRITICAL TO PATIENT CARE" yelling at me in all caps just like that.

I called Marc at work to let him know and he decided that he wanted to come home and go with me to the appointment. We quickly found someone to watch the other three kids last minute. When Marc got home he asked me to show him the MRI report, so I pulled it up again and saw this sentence that I somehow missed the first time I read it: "Imaging finding suspicious for neuroblastoma or, less likely, adrenal hemorrhage", which, honestly, was quite an upsetting sentence to read.

Man, this story is long, I will have to finish it later. Here are some pictures of Finn and Conor wrestling. Conor thinks it is so funny if I walk him up to Finn and then Finn grabs him and they fall onto the pillow.

Conor's Blessing

Conor was blessed in church back in March. We were lucky that all four of his grandparents were able to come be here for that. Here are his cute pictures. 

We are so happy to have him in our family!

Nora turns FIVE

Somehow it has been almost three months since our little Nora turned five and I still haven't done a blog post about her! 

So funny to think that this little bit has gone from this:

to this in just five years:

Nora is just the best, we love her so much. She is a firecracker. Girlfriend is strong willed, for sure. She is so sweet and loving and generous. Any time she has any amount of money she wants to spend she always wants to get something for herself and for Teresa and Finn as well. She is such an amazing and helpful big sister to Conor. She is so good at making him laugh and smile and generally keeping him happy when I have to get things done around the house. She and Finn are still good little buddies, and of course have about a thousand little spats each day mixed in with all their fun moments. She still completely idolizes T. She is so, so, so ready to go to Kindergarten! She still has quite the temper, but we are working on expressing those big emotions the right way.

She is really loving baby dolls right now, she would spend all day feeding and changing and taking care of her dolls. She told me the other day that her Baby Alive doll broke her collarbone when she was born, just like Conor, and that she also had to have heart surgery, just like Conor. 

Nora has been talking about learning Tae Kwon Do for a long time now, ever since she saw someone doing it on Yo Gabba Gabba when she was two or three. We were finally able to get her signed up in a class recently. She loves it! And has taken to it immediately, as well.

She and T got their hair cut recently and it was fun to observe their differences while they experienced that. T was exactly the way I am when I get my hair cut and just quietly told the stylist what she wanted and then sat quietly and awkwardly until it was done. Nora had very specific ideas of what she wanted her hair to look like. She wanted it short, short, short. The stylist she got kept trying to convince her to keep it longer and would cut just a little bit at a time. Nora would firmly shake her head and say "no! I want it shorter than that!". Finally when it reached her desired length she said "that's short enough, no more cutting!". I think it turned out super cute. She keeps reaching up and patting her bangs to make sure they are still there. If they get pushed back with the rest of her hair she says "Mom! I need help finding my bang!". It is pretty cute.

She wanted a storm trooper cake for her birthday. I let her do most of the decorating, she loved pouring the frosting and then they all had fun adding the sprinkles. She had Mina and Dalia over for a sleepover to celebrate on her birthday. She and Dalia didn't go to sleep until after 11, and they loved every minute of it!

We waited to celebrate big until her grandparents came to town for Conor's blessing. Then we all went to Medieval Times, which she loved, of course. 

I just love Finn so much in this next picture.

We are so lucky to have our Nora!

Easter

Our Easter celebrations this year did not go as planned. We started out pretty strong with our Holy Week lessons each night, but sick kids and busy work schedules and piano and softball all derailed us a bit. We were planning to catch up Saturday evening, but Conor had different ideas. He had been sick all week and Friday night his congestion was really bad. He could barely nurse because he was having so much trouble breathing through his nose. He was up most of the night either coughing or struggling to breathe enough. We were a bit concerned that he might have RSV and so determined to watch him closely on Saturday to see if we would need to call the doctor.

Right around noon he got very upset because Marc dared to set him down for a minute. While he was crying both of his feet turned a bright purple. We quickly called the cardiology line at Hopkins and they told us to bring him in to the ER right away.

Of course, when we got there he seemed perfectly fine, and they ruled out RSV right away, but hooked him up for an EKG and a blood oxygen monitor. He was pretty angry about that, but no foot discoloration this time. His EKG looked normal but his oxygen saturation would drop occasionally, especially when he would start nursing. The cardiologists on call didn't think it was anything worth keeping him around for and we were pretty sure we would be heading home after a couple of hours of wasted time. So we were quite surprised when one of the ER doctors came in and told us they were going to admit him for further monitoring. The ER doctors said they didn't feel comfortable sending him home without knowing why his oxygen levels were dropping now and then.

Snoozing at the ER

Marc went home to pick up the other kids from a friend's house and Conor and I headed up to the 9th floor for the night. Spending the night on an uncomfortable hospital couch/bed hybrid is about as delightful as you can imagine it would be. Conor usually sleeps with me at home, and he had no interest in trying out solo sleeping in the hospital. Marc was able to get a fantastic sister from our ward to come hang out at our house for a few hours once the kids were in bed so he could come up to the hospital. He held Conor for a few hours while I got a nap and then I spent the rest of the night holding Conor in a rocking chair and trying to not knock off his little foot monitor. He continued to have desats throughout the night, but there wasn't really any pattern to when or why it was happening.

Cute boy in his hospital bed

The nurses brought him his first ever Easter basket. He wasn't really sure what to do with it. 

The cardiology fellow came by in the morning and told us that they had reviewed his echo-cardiogram from his three month check up and said everything still looked good, though they did notice that he had a Patent Foramen Ovale, or PFO, which is a small hole in the heart. This is one of two holes in the heart that everyone has in utero, and Conor's hasn't closed yet. She said it was unusual for it to cause these kind of problems and that it might still close on it's own since he is so young still. And then she was just kind of shruggy and said that they didn't really know what was causing his desats but that they were sending us home.

Luckily for the kids at home the Easter Bunny had organized all their basket stuff on Friday night instead of waiting until the last minute so it was easy enough for her assistant to assemble for Sunday morning.

        The EB found these cute eggs that doubled as animal noses once you opened them up. These three loved them!

Marc came and got us about two and we went home and had an Easter egg hunt and then ate leftover mac and cheese for Easter dinner. The other three were thrilled to have Conor and me home and were so cute showing off everything the Bunny had brought for them.

I was/am a bit annoyed by how shruggy and no-big-deal-y they were acting about the whole thing. His feet have continued to randomly turn blue-ish and purple-ish in the weeks since Easter and no one can really tell us why they might be doing that. They didn't think his coarctation has returned, even though they told us after his surgery that there was a 15% chance that it could return at around 6 months. I wish they had just gone ahead and done an echo while we were there to make sure. Instead we will wait for his regularly scheduled one coming up on the 18th and I will try not to explode with rage if it shows something that they should have caught while we were in the hospital.

Conor's Heart - Part 6

"He needs surgery. We want to do it this afternoon.".

 That is absolutely the worst and most terrifying thing anyone has ever said to me. After we got Conor's diagnosis and heard that he needed surgery I remember thinking that I was going to be terrified about his heart for the rest of my life. Hearts are kind of a big deal, you know? We'd both been doing really well keeping calm throughout this whole ordeal. We'd gotten several comments that it was obvious we weren't first time parents because we weren't freaking out too much. But once we knew he needed heart surgery at five days old I was having a hard time keeping it together. Every time one of the doctors came in his room it was hard for me to keep from crying, and I'm definitely not a crier. Once we knew surgery was going to be happening shortly Marc called a friend to come help him give Conor a blessing. While he was there I asked for one as well and it was such a great experience. It was so comforting and calming and I just knew that everything would be okay. I immediately felt all of my fears for Conor dissipate.

We have felt so blessed throughout this whole experience. There were so many miracles and blessings and tender mercies every step of the way. We felt the love and support of so many people praying for Conor and for us all over the world. Three separate cardiologists commented on how amazing it was that Conor's wonderful nurse, Karen, recognized his early symptoms. They told us that the fact that it was caught while he was so young and his ductus was still open had everything to do with why his surgery was so easy and his recovery so fast. His little body hadn't yet started to suffer from many symptoms that would have caused him to be weaker for his surgery. They told us that there was another baby in the hospital right then that had had the same surgery, but it wasn't caught until she was ten days old, and she was still in the hospital two weeks later. It is amazing what a difference five days could make.

His recovery could not have gone more smoothly. He was off any sort of blood pressure medication within days of his surgery. We were told that it's practically unheard of for babies to not need medication for a minimum of two weeks after the repair Conor had done. The original timeline we'd been told was that he was looking at at least a week long hospital stay, including 3-4 days in the PICU. He was admitted about 7pm Tuesday night, had his surgery Wednesday night, and he was out of the PICU by Saturday afternoon and we brought him home on Tuesday afternoon, so he didn't even make it an entire week in hospital.

Nora got the first snuggles when we got him home:

Every single doctor and nurse we interacted with at Johns Hopkins was just amazing. It was comforting to me that almost every single nurse Conor was assigned had given birth to a baby of their own within the past year. They all treated him with so much tenderness and I could feel the love and concern they all had for him. His little lips were getting so chapped in the PICU, because he kept blowing little spit bubbles as he slept, and one of his nurses always remembered to come in and rub some vaseline on for him to make sure he was comfortable. They all would rub his little forehead and speak to him so soothingly whenever they had to take his temperature or blood pressure or any of the other number of things that they had to do that made him uncomfortable. With three other little people at home we couldn't stay at the hospital 24/7 and it was such a blessing to feel so confident in the people that we were leaving him with.

He has continued to do so well since we have been home. We had a home nurse coming once a week to check on him for awhile, and to monitor how his incision site was healing. I got to change his bandage everyday. You can see in the picture below how a small part of it separated a bit so needed a bit more time to heal up. There are stitches a few layers below the surface. That single stitch you see is where his chest tube was coming out - it was interesting watching them remove it, they already had the stitch in place and just sort of loosened it up and then pulled the chest tube out. Then the nurse just kind of cinched it up again. His doctor said that by next summer his scar will be pretty much invisible.

I'm not sure what I thought we were going to find out when we were headed to the ER that day. I definitely wasn't thinking it would be anything terribly serious. Certainly I didn't expect for him to end up having heart surgery the next day. Now that he is home the whole thing just feels so surreal. I look at him sleeping in my arms and it kind of feels like we watched it happen to someone else. Marc and I look at each other sometimes as say "did that seriously happen?". What a blessing it is to live in a time and place where modern medicine can do so much to fix a tiny little heart! His heart is about the size of his little fist, I am just amazed that doctors are able to work on something that small and do it with such finesse and precision.

February 7th through the 14th is CHD awareness week. One in one hundred babies are born with CHD. About 8% of those babies will have a coarctation of the aorta like Conor did, with boys being slightly more likely to have this particular defect. Two-thirds of those babies will have a bicuspid aortic valve like Conor does. Our doctor told us that as far as heart conditions go, this is the one to have. Conor should have a relatively normal life from here on out. For now he will go in once a month to have an EKG, an echo and blood pressure check. There is a 10ish percent chance that he will need to have another procedure if they decide his aorta wasn't widened enough. We should know if he needs that or not at about his six month check up. If he does it will be a much simpler procedure involving sending a balloon through a blood vessel in his groin up to his heart. After his first year he will drop from monthly monitoring to yearly and hopefully eventually will end up only going in every three years. He should be able to be as active as any other kid. He will be at a higher risk for needing medication to control high blood pressure as he gets older. Interestingly enough, having one baby with CHD slightly increases our risk to have another, though doctors really don't know why this is. Our chances only increase from about 1% to 2%, so not by much. And Conor's future children will also have a similarly slightly higher risk of being born with a congenital heart defect of some kind.

We are so, so, so grateful to have this special little guy in our family. We love him so much. His older siblings all just fawn all over him. Finn especially loves to love on him. He will come over and smother him with hugs and whisper "I luff you, I luff you, I luff you" over and over again and it melts my heart.

I had Marc pull out the camera to do a little photo shoot of him today. He is such a snugly, smiley, sweet little boy.

Big brother had to get in on the action, too, of course. I love watching their relationship develop.