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!
Saturday, May 7, 2016
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.
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!
I just love Finn so much in this next picture.
We are so lucky to have our Nora!
Friday, May 6, 2016
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.
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.
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.
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.
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.
Sunday, February 14, 2016
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.
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.
Sunday, January 31, 2016
Conor's Heart - Part 5
We were so excited to have Conor moved to a regular room, partly because it meant his siblings could come and visit him. They had been pretty disappointed that he finally got here after months of waiting only to disappear again. Every time we would go home from being with him Finn would say "Tonor? Where Tonor?". They were very excited to come see him.
And thank heavens Granny was here to take care of Teresa, Nora, and Finn so we could spend so much time at the hospital with Conor!
Once he got to his room they were able to remove most of his wires and tubes. I was cringing a little bit for him when they took out his arterial lines, not only were they stuck in like the IV's but they'd also attached them to him with several little stitches to keep them in place. He also screamed like crazy when they pulled the drainage tube out of his chest, poor lad. By Sunday he was down to just having the feeding tube, one IV line, and a blood pressure monitor on him at all times. At that point we were able to hold him whenever we wanted and it was easy enough to get him out of his bed without needing help from a nurse. He definitely seemed a lot more comfortable once so many of the wires were gone!
Monday morning we were able to meet with all his doctors to discuss how he was doing and the game plan going forward. They were all amazed with how quickly he was recovering and said that basically he just needed to show us that he could eat by mouth and he would be ready to go home. He did a really great job getting back to nursing right away. His doctor felt like his few days at home getting to practice nursing was a huge help in making his transition easier. He did really well all day Monday but then in the evening he had two major spit up episodes. Because of those they decided to wait a bit longer on removing his feeding tube. Luckily after that he did awesome all night Monday night, in fact he acted like any other newborn and pretty much just wanted me to hold him and nurse him all night. Tuesday morning they took his feeding tube out and we got to see his sweet baby face again.
You can see that large spot on his little wrist was where one of the arterial lines was placed.
And then before we knew it the nurses were coming in with paper work for us to sign and telling us we could take him home!
Tuesday, January 26, 2016
The Christmas Post
We took so many fewer pictures this year than we usually do, but I had to at least get my all-the-kids-piled-in-a-chair picture! They love it.
This was Christmas morning.
We attempted to get some pictures before church in all their Christmas Sunday best.
Of course the three older kids were super excited about Santa this year. Finn was so cute, he was so excited about any Christmas decorations we drove past. He would excitedly point out a Santa or snowman or whatever and make sure that every one in the car had seen it. We spent several nights driving around seeing Christmas decorations and it never got old.
Nora was pretty stoked about the stockings.
This cute boys first Christmas.
Finn is at such a sparkly age, he was so excited about every present he opened. He didn't want any help, so each one took a while and the whole time he would say "What is it Mama? What is it?"
We got T a camera this year and she was so shocked and excited when she opened it. We've all had many a picture taken of us since.
Finn was especially excited to go see Santa. All day he was talking about it,"I see Santa, I give Santa hugs and kisses". When we got there he got very shy, though not especially scared. He was barely able to whisper what he wanted to him and kind of froze when Santa offered to let him sit on his lap.
Just imagine a cute picture of my four kids with Santa, because I keep forgetting to load it to the computer!
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