I was really proud of Miss Iz yesterday. She did such a great job handling emotions! She's been dealing with pretty severe anxiety ever since her open heart surgery at seven months old and has been in and out of therapy since shortly before she turned two. As she grows and matures, the manifestation of her anxiety changes. Adding an anxiety med last year helped as well and we moved from her very long selective mutism stage into what I call the "Fight or Flight" stage.
One of the things we deal with is the fact that regular ordinary frustrations for her age can often kickstart the anxiety and then we go from 0 to 300 in a very short amount of time. She does OT as well as meets with a therapist to help and she and I do a lot of work at home. She had been making big improvements and then school just set her back to the point we pulled her out. She's made great strides again and those fight or flight outbursts are getting further and further apart. Yesterday morning W had OT and then we ran errands to finish off our grocery shopping for the weekend and next week. She did awesome navigating the crowds (sometimes just having so many people around puts her on high alert and it takes very little to tip her over the edge), she handled being told "no" to things like a champ, she listened to instructions fairly well. She needed some reminders here and there but nothing escalated and she chose appropriate ways to express the emotions she was having. She used her words, did her breathing, when we needed to we simply moved together to a quieter part of the store, we talked things out.
We talk a lot about how we all have big emotions and that that is okay and normal and we are supposed to have big emotions. But we have to choose how to handle those big emotions--we can't hurt others or ourselves or destroy things. We talk a lot about making safe choices and that even grownups have to still keep working on things, too. She may not always be in control enough to make the choices she needs to (which is why she's homeschooled now--the school was unwilling to step in when needed to keep her and others safe. She knows that if she's out of control, I'll step in to keep her safe. She doesn't like getting "tight hugs" when she's upset but she's a smart kid and when she's calm, she can tell you she needs them, even when she can't ask for them), but she's working on making them a habit so she doesn't have to think about them. We practice when she's calm and she's applying her calm down strategies to other people in the house. I was irritated with W this morning because he kept trying to climb on me and almost knocked my coffee over and I asked him to get down and go into the living room--Iz came over and starting rubbing my back in long firm strokes and told me that pressure input is really good for staying calm when you start to get mad LOL (Iz's response to W irritating her is usually screaming and crying and we are working on that because the loud wailing won't fix the problem--using her words will be more effective because then even if W doesn't stop because he's two, I can hear what the problem is and come help. I used my words like she is supposed to tell W to stop and go in the other room but she figured some pressure input wouldn't hurt). She's a funny, sweet, thoughtful little girl :)
Showing posts with label OHS. Show all posts
Showing posts with label OHS. Show all posts
Saturday, March 17, 2018
Wednesday, April 19, 2017
It has been five years
Five years ago today, I handed my daughter over to her medical team.
They put her to sleep, stopped her heart, and sewed in a little gortex patch so her heart could work the right way. She came back to us a maze of tubes and lines and machines and medicine. She was sedated and on a ventilator and it was such a long long night waiting for her to wake up.
Two days after surgery she still required oxygen but they were able to switch to blow by (the blue tube) so it just blew oxygen in her face to help her breath. She was still a maze of tubes and wires and had to be sedated often to keep her calm
By April 22nd, she was spending more time awake and even gave me a teensy tiny smile
I spent a lot of time reading to her, particularly Winnie the Pooh, because it helped her stay calm and drift off to sleep.
Finally, on April 23rd, we said goodbye to the maze! She just has an IV in her foot and her pulse ox but was free from chest tubes and central lines and all the other things that made her so uncomfortable
On April 24th, she was determined to stay awake and not miss anything, no matter how sleepy she got
By April 25th, she was feeling pretty good--she was finally able to get dressed and spent some time playing!
The 25th was also an extra special day because we were finally discharged from ICU and went home! She was so very happy to be back in her own bed
She was a little grumpy, though, because she still had to take a bunch of meds and had to add back thumping to her routine because of the surgery
We had our first outing ten days after surgery on the 29th and she had a wonderful time getting out and about
Before her surgery, she had pretty much stopped growing. Just breathing took so much energy there wasn't much left over for eating. After surgery, though? It was like having a newborn! She nursed alllllllll the time and being asked if she was ready to eat got the best reaction
By May 4th, her steri strips were almost gone and her incisions were looking really good (she has the zipper, two chest tube scars (she calls them her buttons), and faint scarring on her neck from the central line)
Five weeks and one day after surgery, her scars were looking really good!
Today, five years later, she still shows off her scars to people :) She is at cardiologist visits every two years and has no restrictions. Oh, how far we have come!
They put her to sleep, stopped her heart, and sewed in a little gortex patch so her heart could work the right way. She came back to us a maze of tubes and lines and machines and medicine. She was sedated and on a ventilator and it was such a long long night waiting for her to wake up.
Two days after surgery she still required oxygen but they were able to switch to blow by (the blue tube) so it just blew oxygen in her face to help her breath. She was still a maze of tubes and wires and had to be sedated often to keep her calm
By April 22nd, she was spending more time awake and even gave me a teensy tiny smile
Finally, on April 23rd, we said goodbye to the maze! She just has an IV in her foot and her pulse ox but was free from chest tubes and central lines and all the other things that made her so uncomfortable
On April 24th, she was determined to stay awake and not miss anything, no matter how sleepy she got
By April 25th, she was feeling pretty good--she was finally able to get dressed and spent some time playing!
The 25th was also an extra special day because we were finally discharged from ICU and went home! She was so very happy to be back in her own bed
She was a little grumpy, though, because she still had to take a bunch of meds and had to add back thumping to her routine because of the surgery
We had our first outing ten days after surgery on the 29th and she had a wonderful time getting out and about
Before her surgery, she had pretty much stopped growing. Just breathing took so much energy there wasn't much left over for eating. After surgery, though? It was like having a newborn! She nursed alllllllll the time and being asked if she was ready to eat got the best reaction
By May 4th, her steri strips were almost gone and her incisions were looking really good (she has the zipper, two chest tube scars (she calls them her buttons), and faint scarring on her neck from the central line)
Five weeks and one day after surgery, her scars were looking really good!
Today, five years later, she still shows off her scars to people :) She is at cardiologist visits every two years and has no restrictions. Oh, how far we have come!
Sunday, April 19, 2015
Three years ago today......
At this time exactly three years ago, I was sitting by my daughter's side in the PICU watching her chest rise and fall, hearing the whoosh of the ventilator that breathed for her, watching the various monitors that told me her vital signs, seeing the steady drip drip drip of many medications feeding into her lines. It had been a long and emotional day and we had been quietly sitting together for a couple hours at this point. Early that morning I had handed her over to a surgical team, they stopped her heart, they repaired her heart, and they restarted that heart. She had some rough moments that day--when they tried to bring her off bypass, she had heartblock and came back to me with pacer wires embedded in her chest and every so often the alarms would blare, telling us her heart rate had either dropped very low or soared very high. But she was there, she was alive, and I waited.
Today, three years later, I sit beside her as she draws her pictures on scrap paper. She loves to draw and it doesn't matter to her if she covers the backside of a piece headed for the recycling bin or draws all over a brand new sheet of paper. She loves ponies and transformers, cars and twirly skirts. She wants to dance her way everywhere and hates to take a nap in case she misses anything. She loves to cuddle as much as she loves to go outside and practice kicking the soccer ball. She is stubborn and sweet and energetic and just full of awesome.
Happy surgeversary, my love.
Today, three years later, I sit beside her as she draws her pictures on scrap paper. She loves to draw and it doesn't matter to her if she covers the backside of a piece headed for the recycling bin or draws all over a brand new sheet of paper. She loves ponies and transformers, cars and twirly skirts. She wants to dance her way everywhere and hates to take a nap in case she misses anything. She loves to cuddle as much as she loves to go outside and practice kicking the soccer ball. She is stubborn and sweet and energetic and just full of awesome.
Happy surgeversary, my love.
Tuesday, January 20, 2015
A trip to the dentist
With the boys, first dentist visits happened around eighteen months. With Iz, though, I had so much trouble finding a dentist who would see her! They hear "heart defect" and "open heart surgery" and they couldn't see her until she was five. I wasn't too worried--until her front teeth started to discolor after several hard falls during some seizures. I finally found a dentist a few months ago willing to see her.....and she was promptly fired as a patient after a very short first visit. She was very anxious, would not sit in the chair, would not let them get a good look in her mouth. Based on the quick look the dentist did get and my description of what happened and the timeline of the graying of her teeth, they advised I get her into a pediatric dentist who could possibly sedate her because she was probably going to need baby root canals to save the teeth to ensure her permanent teeth came in properly down the road.
Finding a pediatric dentist in my area that accepted our insurance was not easy. But I finally found one and while we had to wait about a month to get an appointment, we went in today. Iz was still anxious and not very cooperative but the dentist had several techs come in and between them and myself we held her arms and legs and head still so he could get a look. She wasn't happy but she did get a very good exam and her teeth look great, even the damaged ones! Much of the discoloration is actually now gone and they are returning to their normal color, they are not loose at all, there's no swelling in the gums above the teeth, and while he wants me to continue to keep a close eye on them, he believes she will be just fine. Apparently you can bruise the tissue inside teeth--sometimes the blood that clots in there does kill off the tooth but if the circulation is good enough, it breaks up the clot and the discoloration goes away and the tooth is fine. Looks like she just had some bruising and hopefully when we have her followup, the coloration on those teeth will be absolutely normal and that will be the end of it :p Now that she is on a good dose of her seizure meds, she rarely has injury-inducing falls. She falls, of course, she's only three, but when she used to fall due to seizures, she wouldn't put her hands out to break her fall and that's why she kept hitting her teeth. Now, those hands come out and she sometimes gets a scrape or bump on her hands but that is way better than busting up her face :p
Tomorrow, we head up to the hospital for our new patient visit with the ophthalmologist (the one we've been seeing the past few years moved to California). She is excited because she likes getting her eyes checked plus she packed up her snacks and things and can't wait to use the "lunch purse" we won from Mom on the Go's contest around Christmastime :p S thought the lunch bag was a cool purse so they all call it the "lunch purse" now LOL
Finding a pediatric dentist in my area that accepted our insurance was not easy. But I finally found one and while we had to wait about a month to get an appointment, we went in today. Iz was still anxious and not very cooperative but the dentist had several techs come in and between them and myself we held her arms and legs and head still so he could get a look. She wasn't happy but she did get a very good exam and her teeth look great, even the damaged ones! Much of the discoloration is actually now gone and they are returning to their normal color, they are not loose at all, there's no swelling in the gums above the teeth, and while he wants me to continue to keep a close eye on them, he believes she will be just fine. Apparently you can bruise the tissue inside teeth--sometimes the blood that clots in there does kill off the tooth but if the circulation is good enough, it breaks up the clot and the discoloration goes away and the tooth is fine. Looks like she just had some bruising and hopefully when we have her followup, the coloration on those teeth will be absolutely normal and that will be the end of it :p Now that she is on a good dose of her seizure meds, she rarely has injury-inducing falls. She falls, of course, she's only three, but when she used to fall due to seizures, she wouldn't put her hands out to break her fall and that's why she kept hitting her teeth. Now, those hands come out and she sometimes gets a scrape or bump on her hands but that is way better than busting up her face :p
Tomorrow, we head up to the hospital for our new patient visit with the ophthalmologist (the one we've been seeing the past few years moved to California). She is excited because she likes getting her eyes checked plus she packed up her snacks and things and can't wait to use the "lunch purse" we won from Mom on the Go's contest around Christmastime :p S thought the lunch bag was a cool purse so they all call it the "lunch purse" now LOL
Wednesday, October 1, 2014
I won't let sadness steal you from my arms
A couple of years ago, I wrote about this song and how it helped get me through those rough moments before, during, and after Izzy's OHS
I find that lines of the song still loop through my head as needed, often for different reasons, but comforting nonetheless. Recently, one line has been popping into my mind in particular--I won't let sadness steal you from my arms.
Not too long ago, Andi over at Bringing the Sunshine wrote about comparison being the thief stealing your joy (http://www.bringingthesunshine.com/2014/09/comparison-thief-joy/). To be honest, comparison isn't often a problem for me. I'm not really one to feel regret over things--they are what they are and the only thing we can do is move forward. When I look at comparisons, it is more a clinical study--my child is or isn't doing XX that all the other kids are doing so I need to tell this doctor or that specialist to see if it is significant to their treatment plan. But every so often, that urge to compare in a woe-is-me way creeps in.
My Busy Little B has been having a rough go of it the last few days and it has made riding the bus not an option so I have been driving him to school. We go and park and I walk him to his classroom through a sea of tiny little kindergartners. Their busses pull up to the front door and let them off. They all stream up the sidewalk and through the doors and find their lockers. They put away their coats and backpacks and chatter with their friends and make their way to their classrooms. They are so tiny and cute and independent. And gosh, did that make me sad for a bit. My little B can't do those things. He has to be escorted from bus (or car) to his locker, he struggles to get his stuff off and hung up, he needs an adult right there to keep him on task, he doesn't like interacting with other kids beyond saying "hi" so there are no cute little conversations with friends.
But as I made my way back through the sea of tiny people, I could hear the music and line in my head--I won't let sadness steal you from my arms--a reminder, just when I needed it, that if I focus on all of the things he isn't doing right now, I'll miss out on all of the things he does do. The way he sings off key with me at bedtime when we do our good-night song, giggling while he does his chores, shouting "watch this, mama!" as he spins in circles on the beach, snuggling up against me when he gets home from school because "I missed you soooooo much", proudly showing off his Lego creations. Letting the coulda, woulda, shouldas take over means you miss out on what is. And what is may be difficult at times but it also is filled with a whole lot of wonder and joy and love.
I find that lines of the song still loop through my head as needed, often for different reasons, but comforting nonetheless. Recently, one line has been popping into my mind in particular--I won't let sadness steal you from my arms.
Not too long ago, Andi over at Bringing the Sunshine wrote about comparison being the thief stealing your joy (http://www.bringingthesunshine.com/2014/09/comparison-thief-joy/). To be honest, comparison isn't often a problem for me. I'm not really one to feel regret over things--they are what they are and the only thing we can do is move forward. When I look at comparisons, it is more a clinical study--my child is or isn't doing XX that all the other kids are doing so I need to tell this doctor or that specialist to see if it is significant to their treatment plan. But every so often, that urge to compare in a woe-is-me way creeps in.
My Busy Little B has been having a rough go of it the last few days and it has made riding the bus not an option so I have been driving him to school. We go and park and I walk him to his classroom through a sea of tiny little kindergartners. Their busses pull up to the front door and let them off. They all stream up the sidewalk and through the doors and find their lockers. They put away their coats and backpacks and chatter with their friends and make their way to their classrooms. They are so tiny and cute and independent. And gosh, did that make me sad for a bit. My little B can't do those things. He has to be escorted from bus (or car) to his locker, he struggles to get his stuff off and hung up, he needs an adult right there to keep him on task, he doesn't like interacting with other kids beyond saying "hi" so there are no cute little conversations with friends.
But as I made my way back through the sea of tiny people, I could hear the music and line in my head--I won't let sadness steal you from my arms--a reminder, just when I needed it, that if I focus on all of the things he isn't doing right now, I'll miss out on all of the things he does do. The way he sings off key with me at bedtime when we do our good-night song, giggling while he does his chores, shouting "watch this, mama!" as he spins in circles on the beach, snuggling up against me when he gets home from school because "I missed you soooooo much", proudly showing off his Lego creations. Letting the coulda, woulda, shouldas take over means you miss out on what is. And what is may be difficult at times but it also is filled with a whole lot of wonder and joy and love.
Saturday, April 19, 2014
Two
years ago today, I handed my 7 month old to the surgical team and spent
hours waiting and worrying as they stopped her heart to repair it. By
this time at night, I was by her side in the PICU where she was sedated
and a machine breathed for her. Today, we celebrated with a trip to the
zoo and she abandoned her stroller at our first stop (always always
always the seals and polar bears) and walked the entire time. She's a
bundle of energy and sass and always and ever a fighter. Happy OHS
anniversary, sweetheart
Wednesday, March 19, 2014
Our EEG was today....
...and the Little Miss hated it.
She was actually excited to go to the hospital. We've been talking about this appointment for days, S has been telling her about his EEG so she'd know what to expect and not be scared, and the last few days she has been asking if it is "hosperry day". And then we walked into registration and poor kid just sorta shut down :\ Stared at the floor, wouldn't look at anyone, the "doctor mode".
For some reason, outpatient registration was closed today and a sharpie on cardboard sign told us to go to Imaging on the second floor to register. Now, I don't know how many of remember this but the second floor is the surgical floor. The floor where I had to hand over all three of my babies for four different surgeries (some major, like OHS, some minor, like ear tubes) over the last two years. FOUR. And the minor ones were as scary as Izzy's OHS, just in a different way, if that makes sense. Whenever there is sedation and they list "death" as a potential risk, it is scary :| Normally when I need to go to the second floor, I'm prepared for it. I have time to think it over, to process, to be mentally ready to step off that elevator. Caught me by surprise today.
Iz perked up when we walked out of registration because we were heading for the elevators and that meant buttons to push. I was thinking this would be no big deal, we had been back to the second floor lots of times, and then the elevator door opened and all the sights and sounds and smells rushed in and yep, not prepared at all. We made it through, though, and got registered and were on our way back up the elevator to the EEG lab.
The lady doing the EEG was really good with Iz :) She let Iz relax and get comfortable, play with some of the stuff, look around. She had this little card with a kid drawn on it and it had velcro along the forehead--teensy tiny EEG wires were hanging off the card with velcro on the ends and you could stick them onto the kid's forehead :p Iz LOVED playing with it. Unfortunately, all she wanted to do was play and dance and bop around and they needed her to be still :\ So she had to be swaddled (the lady called it bundled but it was swaddling with a big sheet instead of a baby blanket :p) and taped down to the bed. She looked like she was in a little cocoon. And she was miserable--she did NOT like being restrained at all. But at least it was mad Iz rather than scared Iz? She didn't act scared, just mad that she was being held still. The lady got her all hooked up and Iz quieted down and watched Mickey Mouse.
Towards the end, though, Iz got mad all over again and managed to get her arm out :p Apparently that was a first for the ladies working that day and a couple of them stopped by to say hello to Houdini LOL Iz insisted that I hold the hand she had worked out of her cocoon and finished her cartoon. And she took some selfies with her free hand (I held my camera for her) but gosh, she looks so miserable in them. I think she was cussing the lady out in whatever passes for cussing in toddler world ;)
As soon as the tape was cut and she could move around, she tried to settle in and keep watching cartoons. Little imp. The lady also gave her a purple wooden hippo with wheels so she left a happy kid and ready to go back again. I, however, would be glad to skip any more EEGs and am hoping all looks good with this one so we don't have to do the longer one!
We also heard back from MRI and we are on the books for April 8th.
She was actually excited to go to the hospital. We've been talking about this appointment for days, S has been telling her about his EEG so she'd know what to expect and not be scared, and the last few days she has been asking if it is "hosperry day". And then we walked into registration and poor kid just sorta shut down :\ Stared at the floor, wouldn't look at anyone, the "doctor mode".
For some reason, outpatient registration was closed today and a sharpie on cardboard sign told us to go to Imaging on the second floor to register. Now, I don't know how many of remember this but the second floor is the surgical floor. The floor where I had to hand over all three of my babies for four different surgeries (some major, like OHS, some minor, like ear tubes) over the last two years. FOUR. And the minor ones were as scary as Izzy's OHS, just in a different way, if that makes sense. Whenever there is sedation and they list "death" as a potential risk, it is scary :| Normally when I need to go to the second floor, I'm prepared for it. I have time to think it over, to process, to be mentally ready to step off that elevator. Caught me by surprise today.
Iz perked up when we walked out of registration because we were heading for the elevators and that meant buttons to push. I was thinking this would be no big deal, we had been back to the second floor lots of times, and then the elevator door opened and all the sights and sounds and smells rushed in and yep, not prepared at all. We made it through, though, and got registered and were on our way back up the elevator to the EEG lab.
The lady doing the EEG was really good with Iz :) She let Iz relax and get comfortable, play with some of the stuff, look around. She had this little card with a kid drawn on it and it had velcro along the forehead--teensy tiny EEG wires were hanging off the card with velcro on the ends and you could stick them onto the kid's forehead :p Iz LOVED playing with it. Unfortunately, all she wanted to do was play and dance and bop around and they needed her to be still :\ So she had to be swaddled (the lady called it bundled but it was swaddling with a big sheet instead of a baby blanket :p) and taped down to the bed. She looked like she was in a little cocoon. And she was miserable--she did NOT like being restrained at all. But at least it was mad Iz rather than scared Iz? She didn't act scared, just mad that she was being held still. The lady got her all hooked up and Iz quieted down and watched Mickey Mouse.
Towards the end, though, Iz got mad all over again and managed to get her arm out :p Apparently that was a first for the ladies working that day and a couple of them stopped by to say hello to Houdini LOL Iz insisted that I hold the hand she had worked out of her cocoon and finished her cartoon. And she took some selfies with her free hand (I held my camera for her) but gosh, she looks so miserable in them. I think she was cussing the lady out in whatever passes for cussing in toddler world ;)
As soon as the tape was cut and she could move around, she tried to settle in and keep watching cartoons. Little imp. The lady also gave her a purple wooden hippo with wheels so she left a happy kid and ready to go back again. I, however, would be glad to skip any more EEGs and am hoping all looks good with this one so we don't have to do the longer one!
We also heard back from MRI and we are on the books for April 8th.
Thursday, March 13, 2014
Field Trip!
A little while back, Iz's EI group had a field trip to a local sporting goods store. They had a tour guide who told some stories of some of the animals on display and let them feed the fish in the pond. We have been to this store many many times--the kids' dad kinda loves this place :p And their favorite part is the giant aquariums :) Normally B can't go to playgroup but since it was a field trip, siblings not in school were welcome to come so off we went!
B was very vocal about wanting his picture taken with the elephant so he gave me a big ole cheesy grin:
Iz decided she wanted a "pitter, mama!" but she would not hold still so you get slightly blurry Iz :p
Later that night, Iz found some new glasses to wear and she had a blast trying to figure out how to make them stay on her face LOL (They belong to Mr. Potato Head). She kept saying she had glasses like me and S :p She was also in a mood to show off her zipper--it is looking really good! She seems to have lost most of the sensitivity around it and doesn't mind having it touched most of the time. She is still very hesitant to let doctors and stethoscopes near the scar but normal everyday stuff doesn't seem to bother her anymore :)
B was very vocal about wanting his picture taken with the elephant so he gave me a big ole cheesy grin:
Later that night, Iz found some new glasses to wear and she had a blast trying to figure out how to make them stay on her face LOL (They belong to Mr. Potato Head). She kept saying she had glasses like me and S :p She was also in a mood to show off her zipper--it is looking really good! She seems to have lost most of the sensitivity around it and doesn't mind having it touched most of the time. She is still very hesitant to let doctors and stethoscopes near the scar but normal everyday stuff doesn't seem to bother her anymore :)Thursday, April 25, 2013
One year ago--April 2012
I was looking through some pictures from last year :) She looks so tiny!
Here she is just ten days after surgery--we took the boys to the park and once she saw the swing, she wouldn't rest until she got a ride :)
The day we got home from the hospital--she was so happy to be home :)
One of my favorites :)
Friday, April 19, 2013
Dear Isabelle
Dear Isabelle,
One year ago today, you had open heart surgery. You were seven months and ten days old and weighed in at exactly fourteen pounds, not quite double your birth weight yet. You could not stand or sit up or crawl. You had stopped rolling over and stopped doing your army crawl. You were just too tired from congestive heart failure. And yet you were a spunky little thing :) You had sass and made it known! You loved to cuddle and nurse and watch everyone and everything. You were teething (but had no teeth yet) and loved to chew on anything you could get into your mouth!
We woke up very very early on the morning of April 19, 2012. In fact, I can go look at my phone right now and the alarms are still set: at 1:35 am I woke you up to nurse one last time before you had to fast for surgery, at 3:45 am we woke up to get ready to go to the Children's Hospital, at 6:00 am you had to report to pre-op. You slept the whole way there but once we were at the hospital, you were wide awake and so interested in everything going on. You moved from my lap to Daddy's and back to mine again, trying to see everything.
You loved it whenever someone came in our room to say hi. You liked all the attention they were giving you :) You even changed into your little yellow gown without too much fuss. And when a nurse gave you a pacifier, you thought it was the best chew toy ever :p
The anesthesiologist came to see us and spent almost an hour with us, just talking. I wish I remembered her name but things were such a blur at times that day. But the anesthesiologist got to know you, and us, and we got to know her and it made it easier to hand you over. You weren't going with a bunch of strangers, you were going with your new friend and you smiled up at her as she took you through the double doors. It would be many hours before I saw you again and the next day before you were awake enough to really know I was by your side. When you are ready, if you want to, I have some pictures of you after surgery. You were so still and small and silent and all the machines and wires and tubes and medicines were a little scary but you needed them and they helped you get better. But today, one year later, they are still too much and so they remain tucked away, waiting, until you are ready for them.
What a difference a year makes! Today, you are fearless. You walk and run and climb and throw tantrums and hug and kiss and love life every single moment. You show off your scars and eat more than your older brother. You love to look at books and be read to. You love to build towers with your toddler Legos
but you are quick to let us know when you are mad they won't go together. You have gotten so many bruises and bumps and scrapes because you are willing to try anything, including jumping off of things :p You play hard, you love so big, and you can't wait for your next adventure.
Your brother S told me that a surgery anniversary is a much bigger deal than a birthday so we had a party today to celebrate :) It wasn't big, just us and Grandma and Grandpa but you were just happy they were here and were so ready for the extra attention! You ran around laughing and jumping and smiling :) When you noticed the camera, you stopped to give me your "cheese" grin, which is oh-so-adorable and shows off your teeth ;)
Your brothers had a lot of fun decorating for you and picking out little presents (a grasshopper gardening set was the biggest hit). S chose a balloon theme and now, hours later, they are balloons roaming around the house, being blown here and there by the heater vents--we had some snow this evening so the heat is a must tonight!
We ate some of your favorite things--pasta salad, broccoli salad, loaded potato cubes, and marinated steak. You couldn't decide what to eat first :)
We got you a cake from Monica's and they did such a nice job. You had a heart shaped cake with a little heart "patch" sewn on, just as you have a patch sewn onto your heart :) When you saw it, your eyes got big and round and you were ready to dive in and eat!
Once you got your first piece, you wasted no time in digging in--and let it be known you were so so happy to be eating CAKE!! :)
You didn't want a single drop of that cake to go to waste!
When you had cleaned your plate, you held it out and demanded "MORE". Of course we gave it to you and you polished off a second small slice :) You asked for a third and we compromised by hustling you off to the bath while the last piece was put away in the fridge for you to eat tomorrow.
You are asleep now, sweet girl, and I can hear you breathe in the next room. You are almost double the size you were this time last year and you are so active and happy and loving. Sure, you have your moments of frustration and anger and sadness, just as all toddlers do, but we are so overjoyed to get to share those moments with you that they don't seem so bad. I can't wait to see what you will be up to on this day next year.
With so much love,
Mommy
One year ago today, you had open heart surgery. You were seven months and ten days old and weighed in at exactly fourteen pounds, not quite double your birth weight yet. You could not stand or sit up or crawl. You had stopped rolling over and stopped doing your army crawl. You were just too tired from congestive heart failure. And yet you were a spunky little thing :) You had sass and made it known! You loved to cuddle and nurse and watch everyone and everything. You were teething (but had no teeth yet) and loved to chew on anything you could get into your mouth!
We woke up very very early on the morning of April 19, 2012. In fact, I can go look at my phone right now and the alarms are still set: at 1:35 am I woke you up to nurse one last time before you had to fast for surgery, at 3:45 am we woke up to get ready to go to the Children's Hospital, at 6:00 am you had to report to pre-op. You slept the whole way there but once we were at the hospital, you were wide awake and so interested in everything going on. You moved from my lap to Daddy's and back to mine again, trying to see everything.
You loved it whenever someone came in our room to say hi. You liked all the attention they were giving you :) You even changed into your little yellow gown without too much fuss. And when a nurse gave you a pacifier, you thought it was the best chew toy ever :p
The anesthesiologist came to see us and spent almost an hour with us, just talking. I wish I remembered her name but things were such a blur at times that day. But the anesthesiologist got to know you, and us, and we got to know her and it made it easier to hand you over. You weren't going with a bunch of strangers, you were going with your new friend and you smiled up at her as she took you through the double doors. It would be many hours before I saw you again and the next day before you were awake enough to really know I was by your side. When you are ready, if you want to, I have some pictures of you after surgery. You were so still and small and silent and all the machines and wires and tubes and medicines were a little scary but you needed them and they helped you get better. But today, one year later, they are still too much and so they remain tucked away, waiting, until you are ready for them.
What a difference a year makes! Today, you are fearless. You walk and run and climb and throw tantrums and hug and kiss and love life every single moment. You show off your scars and eat more than your older brother. You love to look at books and be read to. You love to build towers with your toddler Legos
but you are quick to let us know when you are mad they won't go together. You have gotten so many bruises and bumps and scrapes because you are willing to try anything, including jumping off of things :p You play hard, you love so big, and you can't wait for your next adventure.
Your brother S told me that a surgery anniversary is a much bigger deal than a birthday so we had a party today to celebrate :) It wasn't big, just us and Grandma and Grandpa but you were just happy they were here and were so ready for the extra attention! You ran around laughing and jumping and smiling :) When you noticed the camera, you stopped to give me your "cheese" grin, which is oh-so-adorable and shows off your teeth ;)
We ate some of your favorite things--pasta salad, broccoli salad, loaded potato cubes, and marinated steak. You couldn't decide what to eat first :)
We got you a cake from Monica's and they did such a nice job. You had a heart shaped cake with a little heart "patch" sewn on, just as you have a patch sewn onto your heart :) When you saw it, your eyes got big and round and you were ready to dive in and eat!
Once you got your first piece, you wasted no time in digging in--and let it be known you were so so happy to be eating CAKE!! :)
You didn't want a single drop of that cake to go to waste!
When you had cleaned your plate, you held it out and demanded "MORE". Of course we gave it to you and you polished off a second small slice :) You asked for a third and we compromised by hustling you off to the bath while the last piece was put away in the fridge for you to eat tomorrow.
You are asleep now, sweet girl, and I can hear you breathe in the next room. You are almost double the size you were this time last year and you are so active and happy and loving. Sure, you have your moments of frustration and anger and sadness, just as all toddlers do, but we are so overjoyed to get to share those moments with you that they don't seem so bad. I can't wait to see what you will be up to on this day next year.
With so much love,
Mommy
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