Ellie's Second Hemangioma Surgery

It's been a full year since we started the process of removing Ellie's hemangioma and correcting the way her forehead looks. She just had her second surgery to further correct it, and the incision looks really promising!

But first, let's have a little recap (or you can click here for the longer version with photos):

Ellie: August 2013

Ellie was born with a hemangioma over her left eyebrow. They are fairly common in little kids, but the reason why you don't see a lot of them on adults is because most shrink and fade by the time kids reach kindergarten. We were seeing a pediatric dermatologist for a couple of years after Ellie was born to monitor how it was behaving. A few months after she was born, it ulcerated because of accelerated growth. The poor little girl was in SO much pain. I felt like the worst mother ever for not catching on right away to what was causing her so much discomfort. We were eventually able to clear it up by treating it twice a day at home (it was severely painful to her) and she was put on a drug called, Propranolol to help slow the growth. Unfortunately, when we she stopped taking it, her hemangioma immediately began growing again.

Something wasn't right, and all dermatology wanted to do was watch it.

So we took her for a second opinion with a plastic surgeon, and he immediately told us that it needed to be removed. Hemangiomas are benign tumors, and she had a sub-type that would grow continually until it was surgically removed.

I am SO glad that we went with our gut and looked for a second opinion!

Because of the location of the hemangioma and how large and deep it was, Dr. Andrews suggested a two-part surgery to give her the best chance of looking normal.

Last October, we had the first surgery which was the removal of the hemangioma. At the time, he used a "purse-string" closure to cinch the open wound closed. With the hemangioma taking up such a large part of her forehead, a straight suture would have permanently pulled her hairline down and her eyebrow up. Since we were going for a less-unique look, we definitely wanted to do the two-step surgery to help her look natural. It healed well, but the scar was large. Her hair covered it most of the time, but when she crinkled her nose or cried, it was very visible. So we knew we wanted to pursue the 2nd surgery for her.

And now you are officially caught back up!

Waiting in the hospital for her second surgery

We could have done the 2nd surgery 6-8 months after the first one, but it was recommended that we wait until summer was over. The sun can cause problems with healing scars, so we thought we'd wait until more time is spent indoors. With fall arriving, it was finally time to go back and finish what we started.

The scar from last year

The only problem with fall surgeries is that I knew we would be running the risk of Ellie getting sick with something. Sure enough, we very narrowly got to keep our surgery appointment.

Ellie thought that it was hilarious when the doctor drew on her head. She told him, "We draw on paper, not on people!" Her preschool teacher would be so proud that she remembers the rules. :)

Ellie always gets the short end of the stick when it comes to illnesses. She is our Baby D, was the smallest at 1 lb, 14 oz, has asthma, and deals with all of the other preemie lung stuff that my other kids deal with. She is always the first to get sick, and always gets the sickest out of the bunch. Every cold she gets ends up turning into something more and requires her albuterol inhaler, nebulizer, antibiotics, and steroids to clear her lungs again. Of course, she came down with a cold the Saturday before her Thursday surgery. She has been so healthy too!

Still laughing over the drawing

I REALLY didn't want to push the surgery off any longer. With her being in preschool and our insurance maxed out between my broken leg, multiple rounds of bronchitis, Elijah's split chin, etc, I wanted it done before January 1st rolled around.

The anesthesiologist asked if she would like some "candy gas." He scented her breathing mask with pink bubblegum lip balm and handed it to her so that she could smell it while they were wheeling her back. He was so great with her and took the scariness right now of the situation. Uh...who doesn't want to go get some candy gas?!

So I pulled out my essential oils and started oiling that girl down 3x a day, and prayed that they would provide enough immune support to help us. I'm happy to say that within 48 hours (on Monday), our surgery odds were improving! On Tuesday, I took her to the pediatrician to have her lungs checked, and he cleared her for surgery. When the anesthesiologist listened to her lungs on Thursday morning, there was no sign of the cold she had been battling over the weekend. Yay! Surgery was a go! We were going to get to cross this item off of our to-do list after all!

And then they gave her a hat! She was having a grand old time with all of her accessories by the time she left for the operating room. :)

The surgery was simply a scar revision. Because of the way the "purse-string" suture healed, Dr. Andrews cut all of that scar tissue out and turned it into a straight line suture. Something that will be a lot less visible and if necessary, can be easily covered with makeup as she gets older.

A little rough looking on the other side of surgery. The adhesive tape that they used over her eyes left its mark.

We've been warned that there is always a chance that it could grow back if the Dr missed any part of the tumor. He said that when he was in there, it looked good though. He also told us that he can correct the scar even further in the future if we want him to. Right now, the scar will be at a slant across her forehead, rather than the straight line he was hoping for. We really don't think that a 3rd surgery to fine-tune it will be necessary, but I've also been a 16-year-old girl, so I suppose we can address that in the future if it really bothers her. I think she will be just fine though. She is young and the scar should fade by the time it matters to the teenaged version of Ellie. For now, I'm calling this process complete.

Her eye brow will relax over the next few weeks as the skin heals. It will be a much smaller scar now.

With this surgery comes a major milestone for our family. This is the last of the preemie fixes that we needed to pursue, and we can move on to other things now. Granted, we will still be dealing with some residual preemie related issues (like Caleb's autism), but all of the major, fixable, specialist items have been checked off the list.

We. Are. DONE!

This post may contain affiliate links. For more info, please see my disclaimer page.

It's been a full year since we started the process of removing Ellie's hemangioma and correcting the way her forehead looks. She just had her second surgery to further correct it, and the incision looks really promising!

But first, let's have a little recap (or you can click here for the longer version with photos):

Ellie: August 2013

Ellie was born with a hemangioma over her left eyebrow. They are fairly common in little kids, but the reason why you don't see a lot of them on adults is because most shrink and fade by the time kids reach kindergarten. We were seeing a pediatric dermatologist for a couple of years after Ellie was born to monitor how it was behaving. A few months after she was born, it ulcerated because of accelerated growth. The poor little girl was in SO much pain. I felt like the worst mother ever for not catching on right away to what was causing her so much discomfort. We were eventually able to clear it up by treating it twice a day at home (it was severely painful to her) and she was put on a drug called, Propranolol to help slow the growth. Unfortunately, when we she stopped taking it, her hemangioma immediately began growing again.

Something wasn't right, and all dermatology wanted to do was watch it.

So we took her for a second opinion with a plastic surgeon, and he immediately told us that it needed to be removed. Hemangiomas are benign tumors, and she had a sub-type that would grow continually until it was surgically removed.

I am SO glad that we went with our gut and looked for a second opinion!

Because of the location of the hemangioma and how large and deep it was, Dr. Andrews suggested a two-part surgery to give her the best chance of looking normal.

Last October, we had the first surgery which was the removal of the hemangioma. At the time, he used a "purse-string" closure to cinch the open wound closed. With the hemangioma taking up such a large part of her forehead, a straight suture would have permanently pulled her hairline down and her eyebrow up. Since we were going for a less-unique look, we definitely wanted to do the two-step surgery to help her look natural. It healed well, but the scar was large. Her hair covered it most of the time, but when she crinkled her nose or cried, it was very visible. So we knew we wanted to pursue the 2nd surgery for her.

And now you are officially caught back up!

Waiting in the hospital for her second surgery

We could have done the 2nd surgery 6-8 months after the first one, but it was recommended that we wait until summer was over. The sun can cause problems with healing scars, so we thought we'd wait until more time is spent indoors. With fall arriving, it was finally time to go back and finish what we started.

The scar from last year

The only problem with fall surgeries is that I knew we would be running the risk of Ellie getting sick with something. Sure enough, we very narrowly got to keep our surgery appointment.

Ellie thought that it was hilarious when the doctor drew on her head. She told him, "We draw on paper, not on people!" Her preschool teacher would be so proud that she remembers the rules. :)

Ellie always gets the short end of the stick when it comes to illnesses. She is our Baby D, was the smallest at 1 lb, 14 oz, has asthma, and deals with all of the other preemie lung stuff that my other kids deal with. She is always the first to get sick, and always gets the sickest out of the bunch. Every cold she gets ends up turning into something more and requires her albuterol inhaler, nebulizer, antibiotics, and steroids to clear her lungs again. Of course, she came down with a cold the Saturday before her Thursday surgery. She has been so healthy too!

Still laughing over the drawing

I REALLY didn't want to push the surgery off any longer. With her being in preschool and our insurance maxed out between my broken leg, multiple rounds of bronchitis, Elijah's split chin, etc, I wanted it done before January 1st rolled around.

The anesthesiologist asked if she would like some "candy gas." He scented her breathing mask with pink bubblegum lip balm and handed it to her so that she could smell it while they were wheeling her back. He was so great with her and took the scariness right now of the situation. Uh...who doesn't want to go get some candy gas?!

So I pulled out my essential oils and started oiling that girl down 3x a day, and prayed that they would provide enough immune support to help us. I'm happy to say that within 48 hours (on Monday), our surgery odds were improving! On Tuesday, I took her to the pediatrician to have her lungs checked, and he cleared her for surgery. When the anesthesiologist listened to her lungs on Thursday morning, there was no sign of the cold she had been battling over the weekend. Yay! Surgery was a go! We were going to get to cross this item off of our to-do list after all!

And then they gave her a hat! She was having a grand old time with all of her accessories by the time she left for the operating room. :)

The surgery was simply a scar revision. Because of the way the "purse-string" suture healed, Dr. Andrews cut all of that scar tissue out and turned it into a straight line suture. Something that will be a lot less visible and if necessary, can be easily covered with makeup as she gets older.

A little rough looking on the other side of surgery. The adhesive tape that they used over her eyes left its mark.

We've been warned that there is always a chance that it could grow back if the Dr missed any part of the tumor. He said that when he was in there, it looked good though. He also told us that he can correct the scar even further in the future if we want him to. Right now, the scar will be at a slant across her forehead, rather than the straight line he was hoping for. We really don't think that a 3rd surgery to fine-tune it will be necessary, but I've also been a 16-year-old girl, so I suppose we can address that in the future if it really bothers her. I think she will be just fine though. She is young and the scar should fade by the time it matters to the teenaged version of Ellie. For now, I'm calling this process complete.

Her eye brow will relax over the next few weeks as the skin heals. It will be a much smaller scar now.

With this surgery comes a major milestone for our family. This is the last of the preemie fixes that we needed to pursue, and we can move on to other things now. Granted, we will still be dealing with some residual preemie related issues (like Caleb's autism), but all of the major, fixable, specialist items have been checked off the list.

We. Are. DONE!

This post may contain affiliate links. For more info, please see my disclaimer page.

Caleb's Heart Surgery on His Patent Ductus Arteriosus (PDA)

We can cross another surgery off of our preemie list!

On Thursday, we finally had Caleb's heart defect corrected. It's been something we knew was coming, and in spite of how "easy" the surgery was for his doctors, this type of thing is never easy for parents. Like many preemies, Caleb was born with a Patent Ductus Arteriosus (PDA), but instead of closing as we hoped it would, it had to be surgically corrected.

A perk of being in a children's hospital? Lots of toys to play with in the surgery waiting room!

What Exactly is a Patent Ductus Arteriosus (PDA)?

A PDA is one of the most common heart defects. All babies have a PDA as they are growing in the womb. It allows blood to flow around the lungs since the lungs aren't being used. For the most part, full-term babies have these close on their own within a couple of days after birth. However, sometimes those PDAs don't close, and they have to be surgically corrected. They are especially common in preemies as those babies haven't fully developed in the womb, and still have a lot of growing to do in their isolettes. The PDA causes the heart to pump poorly-oxygenated blood and have less than optimal blood flow so it can cause issues if left untreated.

What Happens if You Don't Correct a PDA?

Well....nothing at first. Generally speaking, they really don't have a lot of effect on little ones unless they are quite large. The problems come later as they reach their 20's and 30's. An untreated PDA can cause an enlarged heart and heart failure. The hole causes the heart to work extra hard to compensate for the PDA issues and that ends up causing issues later on.

Playing in the surgery waiting room

How Do You Fix a Patent Ductus Arteriosis?

If the PDA is found in a preemie, then doctors often choose to try using medications to close the hole. Our doctors tried Indocin on Caleb and a couple of our other kids. It successfully closed Ellie's PDA (and another kid...I can't remember which one), but Caleb's was ornery and wouldn't budge.

At the time, if the PDA had caused other physical issues, the doctors would have repaired it, but the major problem with that is the size of the child. Preemies have tiny little arteries, so the procedure that they used on Caleb this week would have been impossible. An infant has to have open heart surgery to fix it. No thanks! Whenever possible, doctors push the surgery off until the baby is older.

Thankfully, we were able to hold off on the surgery and wait until now. And with the passing time, Caleb was able to undergo a much less invasive surgery with minimal recovery time.

Mommy and Caleb

Caleb has been followed by a pediatric cardiologist since he left the NICU. It involved yearly echocardiograms and appointments to monitor his heart. When he left the NICU, Caleb actually had TWO heart defects. The PDA, which I explained above, and an ASD. In a nutshell, the Atrial Septal Defect is another hole that is between the top two chambers of the heart that really hampers effective blood flow. At his yearly appointment in December, we found out that his ASD had officially closed and was no longer an issue. Yay!

His PDA, though, was still a problem, and that's why we had surgery last week.

Happily, the procedure is much easier at this age. It involves creating two small punctures in the groin, one in the vein and one in the artery. They use those two holes to insert a camera to take pictures of the heart and a catheter to correct the heart defect. The catheter has a coil on the end of it that is threaded up into the heart and used to block off the hole. In Caleb's case, two coils were used because of the size of the hole. We were told that they used a 3mm and a 5mm coil to plug his 7mm opening. They twisted these together, and they will now be part of his heart structure forever. There is no chance of them coming loose, and eventually the wall of that blood vessel will grow up over them and they will become part of the wall.

Pictures of Caleb's heart that the doctor gave us after surgery (click photo to enlarge)

As a side note, is it incredible or what that they are able to do this???

Waiting to be taken to surgery

So How Did Caleb Do With All of This?

We knew it would be a little rough with the developmental delays and sensory issues that Caleb deals with. Strangers, lights, and noise were the perfect recipe for a very anxious day.

Caleb loved the first part of the day...the part where he got to spend time *just him* with Mommy and Daddy. He was all smiles on the way to the hospital and joyfully played with the toys in the Same Day Surgery Waiting Room. He doesn't give out smiles easily, so I always treasure them.

Then we headed back to an examination room to review his medical records and any changes with the nurse, anesthesiologist, and cardiologist. And that's where his anxiety kicked into gear. He wasn't very happy in the room and kept taking us by the hand to try to drag us to the door (his way of saying, "I'm done! Let's go home!") I think a big part of his frustration (other than the whole lack of communication thing) was that he was hungry and thirsty and couldn't eat anything.

The cardiologist was running a bit late with another procedure, so we were extra happy when the "pink medicine" was brought in. Can I just say, I LOVE that medication! I can't remember what it's called, but it is for patients with anxiety and actually gives them amnesia for a period of time after they take it. Caleb swallowed it about 20 minutes before they took him back, and according to the nurse, he doesn't remember being separated from us. He just remembers being with us...and then being with us. I sure hope that's true! Also, it relaxed him so much that he zonked out for a few minutes, so that was nice!

That pink stuff is AWESOME!!

And then he was put in a wagon and taken back.

We were told that it would take about 2-3 hours for surgery and another 1 hour in the recovery room before we would be able to see him on the observation floor. 

But that didn't happen.

Instead, we got regular updates throughout his surgery and were grateful when we finally got the call that he was out of surgery and in recovery. But then 10 minutes later, they called down to us again (the surgery waiting room is a floor below the operating and recovery rooms). "Please send Caleb's mom up." I figured he must have woken up quickly and they were needing a familiar face for him.

Instead, I walked into the recovery room (a big open room) to find a curtain drawn around his bed. A nurse took me inside the curtain where I saw a very combative Caleb, attempting to kick and flail everything off of him at once. Four nurses were trying to calm him down with no luck. One of the nurses turned to me and said, "We need him to hold still. If he doesn't, that clot in the artery in his groin will come loose, and he could bleed out in a matter of minutes."

Awesome.

For a split second, I felt like crying, but quickly realized that wouldn't be the most helpful move for anyone. Unfortunately, I wasn't able to calm him down either. I asked them to lower the bed rail, and even getting into his face so that I was all he could see, wasn't enough. The nurses asked me to sit down in a chair so that I could hold him (as flatly as possible). That didn't work either.

I finally turned to the nurse closest to me and said, "This is going to sound crazy, and you can laugh if you want, but I need you to go back down to the waiting room. Find my husband, and ask him for my oils. When he asks you which ones I want, tell him that I want all of them."

Oh yeah, I totally got strange look (although she did a really good job trying to hide it), but off she went to get what I needed. It was either ask for that or ask them to give him knock out drugs because he was beyond being calmed. 

She came back and helped me twist the tops off of three different stress oils so that I could rub them on Caleb...and five minutes later he was calm. I still find myself thinking these won't work, but I'm really glad that I threw them in my bag that morning. I actually brought the stress oils for *me,* but they were handy him too.

It took another 30 minutes or so to get him cleared to go to an observation room, and we finally got to meet back up with Sean.

And then we had to keep him still and mostly flat for the next six hours.

Mommy and Caleb: Finally calm and in the observation room!

Have you ever tried to keep a 3-year-old still for six hours while they are awake?!

Poor kid! He really just wanted to get up and walk around, and wasn't too happy when Sean and I insisted that he stay with us. He was pretty thrilled, through, when the nurses ordered him a big tray of food with all of his favorites on it: chicken nuggets, strawberries, raisins, crackers, juice...and he finished all of that off with a watermelon slushy and the french fries from my lunch. He was so pampered by the time we left that floor. His nurses were beyond sweet and so attentive to anything that would make him (and us) more comfortable. I think they would have moved the slushy machine into the room if they thought that he would like that!

Honestly, we were so impressed with everyone that we interacted with at the children's hospital. It takes a special type of person to work in children's healthcare, and the doctors, nurses, techs, radiologists, anesthesiologists...everyone...obviously loves the kids who come through their doors. We were so very blessed to be cared for by people who treated our son as their own.

On the way to radiology to check the coil placement: Caleb, Ashley, and Dana

Speaking of nurses...want to hear a good story?

So we were sitting in that observation room for six hours, keeping a pretty low profile. But it's inevitable that the "quadruplets" part comes out when people read any of our kids' medical paperwork. Okay, okay...and I kind of like getting to talk about what a blessing our kids are to us! Anyway, our nurse, Ashley, and her assistant, Dana, asked about our other kids, and Sean pulled up a photo of them on his tablet. They took the tablet out to the nurses station to show the other staff (with our permission) because it's a pretty unique family situation.

And then this super sweet nurse popped her head into the room. "Hi, my name is Elizabeth! I didn't want to say anything and bother you, but since the photo is being shown around, I thought I would. I've been a blog reader for about a year. I saw Caleb's name on the list this morning, and thought, 'I know these people!' So I hope it's okay that I stuck my head in." Oh my gosh...how FUN is that?! She let me know that she was able to give our nurses more info about our family based on what I've written on our blog (all public info, obviously) so that they were extra ready for us. SO thoughtful and kind of her!

Plus, I LOVE meeting readers in real life! So Elizabeth, if you see this, thanks for sticking your head in! It was so nice to meet you!

How is Caleb's Recovery Going?

Recovery? What recovery? Seriously, this boy has surprised us quite a bit. He was a pickle at the hospital because he didn't want to hold still, but once we said, "let's go home," we got a big smile out of him. We were originally told to be prepared to spend the night there for observation, but he was released the same day instead. We were home by 6pm that night, and he immediately started walking around and playing.

Other than being a little more tired than usual as the anesthesia effects wore off, you would have never known that he had been through heart surgery to correct a defect.

Mommy, Caleb, and Daddy

All I can say, is that God is amazing! We are grateful to have this surgery behind us and grateful that our little boy recovered SO quickly without even needing another dose of Tylenol once he came home. Seriously, amazing!
This post may contain affiliate links. For more info, please see my disclaimer page.

We can cross another surgery off of our preemie list!

On Thursday, we finally had Caleb's heart defect corrected. It's been something we knew was coming, and in spite of how "easy" the surgery was for his doctors, this type of thing is never easy for parents. Like many preemies, Caleb was born with a Patent Ductus Arteriosus (PDA), but instead of closing as we hoped it would, it had to be surgically corrected.

A perk of being in a children's hospital? Lots of toys to play with in the surgery waiting room!

What Exactly is a Patent Ductus Arteriosus (PDA)?

A PDA is one of the most common heart defects. All babies have a PDA as they are growing in the womb. It allows blood to flow around the lungs since the lungs aren't being used. For the most part, full-term babies have these close on their own within a couple of days after birth. However, sometimes those PDAs don't close, and they have to be surgically corrected. They are especially common in preemies as those babies haven't fully developed in the womb, and still have a lot of growing to do in their isolettes. The PDA causes the heart to pump poorly-oxygenated blood and have less than optimal blood flow so it can cause issues if left untreated.

What Happens if You Don't Correct a PDA?

Well....nothing at first. Generally speaking, they really don't have a lot of effect on little ones unless they are quite large. The problems come later as they reach their 20's and 30's. An untreated PDA can cause an enlarged heart and heart failure. The hole causes the heart to work extra hard to compensate for the PDA issues and that ends up causing issues later on.

Playing in the surgery waiting room

How Do You Fix a Patent Ductus Arteriosis?

If the PDA is found in a preemie, then doctors often choose to try using medications to close the hole. Our doctors tried Indocin on Caleb and a couple of our other kids. It successfully closed Ellie's PDA (and another kid...I can't remember which one), but Caleb's was ornery and wouldn't budge.

At the time, if the PDA had caused other physical issues, the doctors would have repaired it, but the major problem with that is the size of the child. Preemies have tiny little arteries, so the procedure that they used on Caleb this week would have been impossible. An infant has to have open heart surgery to fix it. No thanks! Whenever possible, doctors push the surgery off until the baby is older.

Thankfully, we were able to hold off on the surgery and wait until now. And with the passing time, Caleb was able to undergo a much less invasive surgery with minimal recovery time.

Mommy and Caleb

Caleb has been followed by a pediatric cardiologist since he left the NICU. It involved yearly echocardiograms and appointments to monitor his heart. When he left the NICU, Caleb actually had TWO heart defects. The PDA, which I explained above, and an ASD. In a nutshell, the Atrial Septal Defect is another hole that is between the top two chambers of the heart that really hampers effective blood flow. At his yearly appointment in December, we found out that his ASD had officially closed and was no longer an issue. Yay!

His PDA, though, was still a problem, and that's why we had surgery last week.

Happily, the procedure is much easier at this age. It involves creating two small punctures in the groin, one in the vein and one in the artery. They use those two holes to insert a camera to take pictures of the heart and a catheter to correct the heart defect. The catheter has a coil on the end of it that is threaded up into the heart and used to block off the hole. In Caleb's case, two coils were used because of the size of the hole. We were told that they used a 3mm and a 5mm coil to plug his 7mm opening. They twisted these together, and they will now be part of his heart structure forever. There is no chance of them coming loose, and eventually the wall of that blood vessel will grow up over them and they will become part of the wall.

Pictures of Caleb's heart that the doctor gave us after surgery (click photo to enlarge)

As a side note, is it incredible or what that they are able to do this???

Waiting to be taken to surgery

So How Did Caleb Do With All of This?

We knew it would be a little rough with the developmental delays and sensory issues that Caleb deals with. Strangers, lights, and noise were the perfect recipe for a very anxious day.

Caleb loved the first part of the day...the part where he got to spend time *just him* with Mommy and Daddy. He was all smiles on the way to the hospital and joyfully played with the toys in the Same Day Surgery Waiting Room. He doesn't give out smiles easily, so I always treasure them.

Then we headed back to an examination room to review his medical records and any changes with the nurse, anesthesiologist, and cardiologist. And that's where his anxiety kicked into gear. He wasn't very happy in the room and kept taking us by the hand to try to drag us to the door (his way of saying, "I'm done! Let's go home!") I think a big part of his frustration (other than the whole lack of communication thing) was that he was hungry and thirsty and couldn't eat anything.

The cardiologist was running a bit late with another procedure, so we were extra happy when the "pink medicine" was brought in. Can I just say, I LOVE that medication! I can't remember what it's called, but it is for patients with anxiety and actually gives them amnesia for a period of time after they take it. Caleb swallowed it about 20 minutes before they took him back, and according to the nurse, he doesn't remember being separated from us. He just remembers being with us...and then being with us. I sure hope that's true! Also, it relaxed him so much that he zonked out for a few minutes, so that was nice!

That pink stuff is AWESOME!!

And then he was put in a wagon and taken back.

We were told that it would take about 2-3 hours for surgery and another 1 hour in the recovery room before we would be able to see him on the observation floor. 

But that didn't happen.

Instead, we got regular updates throughout his surgery and were grateful when we finally got the call that he was out of surgery and in recovery. But then 10 minutes later, they called down to us again (the surgery waiting room is a floor below the operating and recovery rooms). "Please send Caleb's mom up." I figured he must have woken up quickly and they were needing a familiar face for him.

Instead, I walked into the recovery room (a big open room) to find a curtain drawn around his bed. A nurse took me inside the curtain where I saw a very combative Caleb, attempting to kick and flail everything off of him at once. Four nurses were trying to calm him down with no luck. One of the nurses turned to me and said, "We need him to hold still. If he doesn't, that clot in the artery in his groin will come loose, and he could bleed out in a matter of minutes."

Awesome.

For a split second, I felt like crying, but quickly realized that wouldn't be the most helpful move for anyone. Unfortunately, I wasn't able to calm him down either. I asked them to lower the bed rail, and even getting into his face so that I was all he could see, wasn't enough. The nurses asked me to sit down in a chair so that I could hold him (as flatly as possible). That didn't work either.

I finally turned to the nurse closest to me and said, "This is going to sound crazy, and you can laugh if you want, but I need you to go back down to the waiting room. Find my husband, and ask him for my oils. When he asks you which ones I want, tell him that I want all of them."

Oh yeah, I totally got strange look (although she did a really good job trying to hide it), but off she went to get what I needed. It was either ask for that or ask them to give him knock out drugs because he was beyond being calmed. 

She came back and helped me twist the tops off of three different stress oils so that I could rub them on Caleb...and five minutes later he was calm. I still find myself thinking these won't work, but I'm really glad that I threw them in my bag that morning. I actually brought the stress oils for *me,* but they were handy him too.

It took another 30 minutes or so to get him cleared to go to an observation room, and we finally got to meet back up with Sean.

And then we had to keep him still and mostly flat for the next six hours.

Mommy and Caleb: Finally calm and in the observation room!

Have you ever tried to keep a 3-year-old still for six hours while they are awake?!

Poor kid! He really just wanted to get up and walk around, and wasn't too happy when Sean and I insisted that he stay with us. He was pretty thrilled, through, when the nurses ordered him a big tray of food with all of his favorites on it: chicken nuggets, strawberries, raisins, crackers, juice...and he finished all of that off with a watermelon slushy and the french fries from my lunch. He was so pampered by the time we left that floor. His nurses were beyond sweet and so attentive to anything that would make him (and us) more comfortable. I think they would have moved the slushy machine into the room if they thought that he would like that!

Honestly, we were so impressed with everyone that we interacted with at the children's hospital. It takes a special type of person to work in children's healthcare, and the doctors, nurses, techs, radiologists, anesthesiologists...everyone...obviously loves the kids who come through their doors. We were so very blessed to be cared for by people who treated our son as their own.

On the way to radiology to check the coil placement: Caleb, Ashley, and Dana

Speaking of nurses...want to hear a good story?

So we were sitting in that observation room for six hours, keeping a pretty low profile. But it's inevitable that the "quadruplets" part comes out when people read any of our kids' medical paperwork. Okay, okay...and I kind of like getting to talk about what a blessing our kids are to us! Anyway, our nurse, Ashley, and her assistant, Dana, asked about our other kids, and Sean pulled up a photo of them on his tablet. They took the tablet out to the nurses station to show the other staff (with our permission) because it's a pretty unique family situation.

And then this super sweet nurse popped her head into the room. "Hi, my name is Elizabeth! I didn't want to say anything and bother you, but since the photo is being shown around, I thought I would. I've been a blog reader for about a year. I saw Caleb's name on the list this morning, and thought, 'I know these people!' So I hope it's okay that I stuck my head in." Oh my gosh...how FUN is that?! She let me know that she was able to give our nurses more info about our family based on what I've written on our blog (all public info, obviously) so that they were extra ready for us. SO thoughtful and kind of her!

Plus, I LOVE meeting readers in real life! So Elizabeth, if you see this, thanks for sticking your head in! It was so nice to meet you!

How is Caleb's Recovery Going?

Recovery? What recovery? Seriously, this boy has surprised us quite a bit. He was a pickle at the hospital because he didn't want to hold still, but once we said, "let's go home," we got a big smile out of him. We were originally told to be prepared to spend the night there for observation, but he was released the same day instead. We were home by 6pm that night, and he immediately started walking around and playing.

Other than being a little more tired than usual as the anesthesia effects wore off, you would have never known that he had been through heart surgery to correct a defect.

Mommy, Caleb, and Daddy

All I can say, is that God is amazing! We are grateful to have this surgery behind us and grateful that our little boy recovered SO quickly without even needing another dose of Tylenol once he came home. Seriously, amazing!
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Hemangioma Surgery on Ellie's Head

A couple of months ago, I wrote about how Ellie has discovered that she looks different from other kids. Her hemangioma caught her eye after a bath one day, and really disturbed her.

I talked to a nurse friend from church because at that point, we were starting to worry about future psychological issues. Taking her out in public resulted in people saying things, and she was beginning to understand that they were talking about her. Sean and I, Cheryl the nurse, and Debbie, our occupational therapist, all agreed that her hemangioma was getting bigger instead of smaller, so we took her to a plastic surgeon for a second opinion. Up until that point, we had been talking her to a children's dermatologist, but they weren't doing anything except watching it. As soon as the plastic surgeon at a different hospital saw her, he said that it was time for it to go.

Dr. Brian Andrews, our plastic surgeon, gave us a couple of different options, but ultimately recommended surgery because of how the hemangioma was behaving.

What Exactly Is a Hemangioma?
Hemangiomas are non-cancerous tumors that typically grow for the first year, and then shrink until they disappear by kindergarten. In Ellie's case, her hemangioma grew so quickly that it ulcerated during the first year. It caused her intense pain, and while it healed, we were told that it would cause scarring. The dermotologist then put her on Propranolol, which is a heart drug that also slows the growth of hemangiomas because it is a beta blocker. The idea was to use it until she passed the age when it should stop growing, and then take her off of it since it can't be used for long periods of time. Unfortunately, as soon as the doctor took her off, it started growing again...and didn't stop. With Ellie already being 2.5-years-old, we could tell that something was different about hers.

We were thrilled to get Dr. Andrews as our plastic surgeon, especially since I blindly called the hospital and asked for an appointment with anyone. When we first met him, he walked into the examining room, popped himself up on the examining table, and then let his legs swing off the side while he talked to us and watched Ellie run around the room. It was nice to meet a doctor who was so laid back and personable. He has a great bedside manner, and interacted wonderfully with Ellie. Ellie wasn't afraid of him at all, and he took his time working with her. I'm really thrilled that he was the doctor that we ended up with!

So three weeks ago, we found ourselves up at 4:30am in order to be at the hospital by 5:30am. Ellie was a great sport in spite of being up early, and we spent our wait time coloring and roaming the halls of the hospital until they took her back. Ellie thought it was great because she was getting special time with Mommy and Daddy while her siblings stayed home with Pa and Ma (Sean's parents).

Hemangioma Surgery on the Face...How Does That Work?

Dr. Andrews recommended that we go with a two step surgery. The first step would be to remove the hemangioma in a circle, and then cinch the edges closed. Do you know what the top of a cloth purse looks like when the drawstring is pulled tight? That's what the incision looks like after the first surgery. Then, 6-8 months later, there will be a second surgery to turn it into a straight line suture. When all is said and done, it will look just like a crease in her forehead.

The other surgery option was to just close it in a straight line suture the first time. The problem with that was that it would pull her eyebrow up and her hairline down permanently. Since we are trying to move away from her looking different, that wasn't an option at all.

So we went with the two step surgery process.

Thankfully, Ellie's first surgery went really well and she had no issues. We were a bit concerned that they would nix the surgery when we got there as she had been sick the week before, but the anesthesiologist cleared her, so they were able to do it after all. Thank goodness, because I really don't like getting up at 4:30am!

Dr. Andrews made extra sure that she couldn't mess with her stitches. He stitched it closed, then put glue over it, then a white bandage, then a flesh colored bandage, and then this nifty mesh hat: 

Guess how long that hat lasted when we got home? 10 minutes is about right. :) But because of all of the layers, she could have taken off the top four layers before there would have been cause for concern.

Ellie's Hemangioma Surgery Recovery

Happily, her recovery was very easy! She was given a prescription for Tylenol with Codeine for pain, but only needed it for about 36 hours. The doctor told us that the pain level would be the equivalent of a really bad rug burn. I honestly doubted that, but sure enough, she was playing and eating like normal within a few hours of surgery. Other than being a little tired, you'd never have guessed what happened by evening the day of her surgery.

Ellie sporting four of her five layers of bandages.

Hemangioma Surgery Follow-Up

So now we are just doing follow-ups for the next 6-8 months to make sure that this first round of surgery heals well. The bandages have all been removed, and Ellie is down to just the stitches. She was a champ when Dr. Andrews removed the bandages even though it pulled on her wound a bit. He was gently trying to remove the center of the bandages where the glue was sticking, but Ellie decided enough was enough. She reached up and yanked that bandage off of her head and handed it over. Yeah, that hurt, but she moved so fast that we didn't realize what she was doing. Yikes!

Ellie and Dr. Andrews

But the tears were quickly dried up when Dr. Andrews asked her if she'd like to pick a treasure from his treasure box. Did I mention that this doctor isn't just a pediatric plastic surgeon? Even though he works with adults as well, and teaches medicine at the University of Kansas, he still took the time to stock a treasure chest with prizes for little kids like Ellie. We really appreciate how hard he works to relate to Ellie and make her comfortable.

What does Ellie's Hemangioma look like now?
I took this photo about two weeks after her surgery. Her surgery site is about as noticable as the hemangioma used to be, but should smooth over the next few months. As for Ellie, she thinks it's pretty awesome that she gets to wear Mickey Mouse bandaids that Sean's mom picked out for her. We are adding a little antibiotic ointment to the bandaid per Dr. Andrews to finish dissolving the glue. No need to pick at it more than necessary!

That's a long update on Ellie, so thanks for hanging with me. We are trying not to draw more attention to the incision than necessary. One of the reasons that we had the surgery in the first place is to get rid of the questions from strangers about whether she fell and needs ice, etc. If you see us out and about, we'd sure appreciate it if you didn't call attention to it or mention it in front of her. She is such a confident little girl, but there really is no point in making a big deal about it. She looks a little different now, but hopefully within a year, you will barely be able to tell she ever had anything on her face at all!

A couple of months ago, I wrote about how Ellie has discovered that she looks different from other kids. Her hemangioma caught her eye after a bath one day, and really disturbed her.

I talked to a nurse friend from church because at that point, we were starting to worry about future psychological issues. Taking her out in public resulted in people saying things, and she was beginning to understand that they were talking about her. Sean and I, Cheryl the nurse, and Debbie, our occupational therapist, all agreed that her hemangioma was getting bigger instead of smaller, so we took her to a plastic surgeon for a second opinion. Up until that point, we had been talking her to a children's dermatologist, but they weren't doing anything except watching it. As soon as the plastic surgeon at a different hospital saw her, he said that it was time for it to go.

Dr. Brian Andrews, our plastic surgeon, gave us a couple of different options, but ultimately recommended surgery because of how the hemangioma was behaving.

What Exactly Is a Hemangioma?
Hemangiomas are non-cancerous tumors that typically grow for the first year, and then shrink until they disappear by kindergarten. In Ellie's case, her hemangioma grew so quickly that it ulcerated during the first year. It caused her intense pain, and while it healed, we were told that it would cause scarring. The dermotologist then put her on Propranolol, which is a heart drug that also slows the growth of hemangiomas because it is a beta blocker. The idea was to use it until she passed the age when it should stop growing, and then take her off of it since it can't be used for long periods of time. Unfortunately, as soon as the doctor took her off, it started growing again...and didn't stop. With Ellie already being 2.5-years-old, we could tell that something was different about hers.

We were thrilled to get Dr. Andrews as our plastic surgeon, especially since I blindly called the hospital and asked for an appointment with anyone. When we first met him, he walked into the examining room, popped himself up on the examining table, and then let his legs swing off the side while he talked to us and watched Ellie run around the room. It was nice to meet a doctor who was so laid back and personable. He has a great bedside manner, and interacted wonderfully with Ellie. Ellie wasn't afraid of him at all, and he took his time working with her. I'm really thrilled that he was the doctor that we ended up with!

So three weeks ago, we found ourselves up at 4:30am in order to be at the hospital by 5:30am. Ellie was a great sport in spite of being up early, and we spent our wait time coloring and roaming the halls of the hospital until they took her back. Ellie thought it was great because she was getting special time with Mommy and Daddy while her siblings stayed home with Pa and Ma (Sean's parents).

Hemangioma Surgery on the Face...How Does That Work?

Dr. Andrews recommended that we go with a two step surgery. The first step would be to remove the hemangioma in a circle, and then cinch the edges closed. Do you know what the top of a cloth purse looks like when the drawstring is pulled tight? That's what the incision looks like after the first surgery. Then, 6-8 months later, there will be a second surgery to turn it into a straight line suture. When all is said and done, it will look just like a crease in her forehead.

The other surgery option was to just close it in a straight line suture the first time. The problem with that was that it would pull her eyebrow up and her hairline down permanently. Since we are trying to move away from her looking different, that wasn't an option at all.

So we went with the two step surgery process.

Thankfully, Ellie's first surgery went really well and she had no issues. We were a bit concerned that they would nix the surgery when we got there as she had been sick the week before, but the anesthesiologist cleared her, so they were able to do it after all. Thank goodness, because I really don't like getting up at 4:30am!

Dr. Andrews made extra sure that she couldn't mess with her stitches. He stitched it closed, then put glue over it, then a white bandage, then a flesh colored bandage, and then this nifty mesh hat: 

Guess how long that hat lasted when we got home? 10 minutes is about right. :) But because of all of the layers, she could have taken off the top four layers before there would have been cause for concern.

Ellie's Hemangioma Surgery Recovery

Happily, her recovery was very easy! She was given a prescription for Tylenol with Codeine for pain, but only needed it for about 36 hours. The doctor told us that the pain level would be the equivalent of a really bad rug burn. I honestly doubted that, but sure enough, she was playing and eating like normal within a few hours of surgery. Other than being a little tired, you'd never have guessed what happened by evening the day of her surgery.

Ellie sporting four of her five layers of bandages.

Hemangioma Surgery Follow-Up

So now we are just doing follow-ups for the next 6-8 months to make sure that this first round of surgery heals well. The bandages have all been removed, and Ellie is down to just the stitches. She was a champ when Dr. Andrews removed the bandages even though it pulled on her wound a bit. He was gently trying to remove the center of the bandages where the glue was sticking, but Ellie decided enough was enough. She reached up and yanked that bandage off of her head and handed it over. Yeah, that hurt, but she moved so fast that we didn't realize what she was doing. Yikes!

Ellie and Dr. Andrews

But the tears were quickly dried up when Dr. Andrews asked her if she'd like to pick a treasure from his treasure box. Did I mention that this doctor isn't just a pediatric plastic surgeon? Even though he works with adults as well, and teaches medicine at the University of Kansas, he still took the time to stock a treasure chest with prizes for little kids like Ellie. We really appreciate how hard he works to relate to Ellie and make her comfortable.

What does Ellie's Hemangioma look like now?
I took this photo about two weeks after her surgery. Her surgery site is about as noticable as the hemangioma used to be, but should smooth over the next few months. As for Ellie, she thinks it's pretty awesome that she gets to wear Mickey Mouse bandaids that Sean's mom picked out for her. We are adding a little antibiotic ointment to the bandaid per Dr. Andrews to finish dissolving the glue. No need to pick at it more than necessary!

That's a long update on Ellie, so thanks for hanging with me. We are trying not to draw more attention to the incision than necessary. One of the reasons that we had the surgery in the first place is to get rid of the questions from strangers about whether she fell and needs ice, etc. If you see us out and about, we'd sure appreciate it if you didn't call attention to it or mention it in front of her. She is such a confident little girl, but there really is no point in making a big deal about it. She looks a little different now, but hopefully within a year, you will barely be able to tell she ever had anything on her face at all!