Livvy Lou - Happy Birthday to youuuuuuuuuu! 27 months of crazy, wild, scary, wonderful, loving memories with you little lady. Now this morning I will say my view of the span of your life is a little jaded perhaps because you were up almost every.hour.last.night. I know it's not your fault, you're still having nightmares and calling out to make sure the big people that you know and love are there to take care of you. It's so sweet how you can lay there and stroke my face falling off to sleep, but how bout we save that sort of cuteness for naptimes and not 3am?
You are so strong and have come out of this last surgery better than anyone could have hoped for given that it was a little rocky those first few days in the hospital. Your favorite things right now are your various sizes of Minnie and Mickey that have been gifted to you from the family, your Mickey Mouse Clubhouse app on MY ipad (you think it's yours), and watching Ducktales and Chip & Dale Rescue Rangers with your dad. Play Doh started off a bit rough but now you like it so long as we understand exactly which color you want to play with and when. Eating is not your fave thing to do at the moment, but I think you're very suspicious of your parents planting medicine in your food so you've been keeping your guard up. I do have to say we have you to the point now where you will take your pills for us when we ask and it makes everyone's life easier!
This coming week will mark the first time you'll be able to swim for the summer. Everyone's looking forward to getting you outside and in a pool to see if you enjoy it as much as last year. One never knows with you Olivia, we think we have you figured out and then you throw us a curve ball. I know it's just because you like to keep everyone on their toes, but a little R & R for your parents and Grandmas would be very sweet of you too. Either way, you are such an amazing little girl and I constantly find myself looking for a pause button on life to just sit and savor the moments with you; to always keep you little and nibble on your chubby baby feet, laugh at your big belly laugh and squeals and soak in those moments when we hang out and lounge curled up together.
Happy Birthday Sweet Girl!
Love,
Mommy
Cinder-Livvy
Wednesday, June 27, 2012
Tuesday, June 26, 2012
Heart of a Lion
Fox News Radio did an interview this morning with a family that wrote this book about their 1994 delivery and life that followed of a son with HLHS. One of my co-workers called to give me a heads up on the way into the office that it was airing and my hard cover book is currently en route to me with express delivery courtesy of Amazon Prime.
Olivia definitely has the heart of a lion, I'm interested to read from another's family perspective.
Olivia definitely has the heart of a lion, I'm interested to read from another's family perspective.
Friday, June 22, 2012
WAWA!
Liv's cardiology appointment yesterday couldn't have gone much better. They decided no echo, her lungs sounded great through all of her crying and screaming. She's already taken the liberty of weaning herself off of lasix and aldactone so the staff decided to quarter her current dosage and the best part - NO MORE FLUID RESTRICTION!
She was so happy last night, seriously, just to request a drink and not have someone come and rudely take it away to preserve precious ounces of the quota. Her INR level was 1.7 and ideally they want her at 2.0 so Coumadin will be a whole tablet now twice per week, but since it doesn't taste terrible, we may be able to con it into her. No change to the amiodarone for her post-op arrhythmia but it's only a quarter of a tiny pill so sneaking that one in has been okay.
Not to jinx anything but she has slept through the night the last three days - that in itself is nothing short of a miracle. All in all everything is great and she is still on track to be in a swimming pool for 4th of July. Good reports from cardiology are like Christmas and all of my other fave holidays combined.
She was so happy last night, seriously, just to request a drink and not have someone come and rudely take it away to preserve precious ounces of the quota. Her INR level was 1.7 and ideally they want her at 2.0 so Coumadin will be a whole tablet now twice per week, but since it doesn't taste terrible, we may be able to con it into her. No change to the amiodarone for her post-op arrhythmia but it's only a quarter of a tiny pill so sneaking that one in has been okay.
Not to jinx anything but she has slept through the night the last three days - that in itself is nothing short of a miracle. All in all everything is great and she is still on track to be in a swimming pool for 4th of July. Good reports from cardiology are like Christmas and all of my other fave holidays combined.
Tuesday, June 19, 2012
Four Weeks Out
It has officially been four weeks since Liv's Fontan. I cannot believe how quickly and slowly those four weeks seem to have gone by. This weekend marked the end of her isolation from the public. I finally took her out for some Mommy/Liv time to enjoy our favorite pastime of shopping! She was definitely more quiet and withdrawn than pre-surgery. At one point you could really tell she was outright exhausted, sitting on my lap eating her snacks just curled up into me. It was so precious. Being that we're in the middle of a ninety plus temp stretch here in good ole burbs of Chicago, Liv is really needs to be in the AC because of her fluid restrictions.
I think we are temporarily over the struggle with her meds, Brian devised a way to deliver most of her important pills via potato chips; or any crunchy salty food that will mask the bite of the pills. So far so good, please keep your fingers crossed. Thursday he'll be taking her to the hospital for her follow up echo and to get her rx for another holter monitor. The desired outcome of the echo is that her heart function is restored to the levels of what it was pre-Fontan and there's no fluid accumulating in her chest so she can go unrestricted with her fluids. The holter monitor is the first step in confirming whether or not the arrythmia has also subsided and whether or not we can start weaning her from the amiodarone. It's less than idea for long term use because of impact on the thyroid, so the sooner we can get her off of it the better.
Miss Liv's personality is coming back in spades these days. She's very quick to laugh, but also still very quick to cry. Nightmares are still going on but I think they're spacing out a little better. Breaks your heart after a nightmare when she wants to confirm she doesn't have to go to the doctor. Once she hears that she gets to hang out and play, she settles in nicely. Only two years old but her guard is up and she wants to make sure she gets to stay in the place she's loved and comfortable.
I think we are temporarily over the struggle with her meds, Brian devised a way to deliver most of her important pills via potato chips; or any crunchy salty food that will mask the bite of the pills. So far so good, please keep your fingers crossed. Thursday he'll be taking her to the hospital for her follow up echo and to get her rx for another holter monitor. The desired outcome of the echo is that her heart function is restored to the levels of what it was pre-Fontan and there's no fluid accumulating in her chest so she can go unrestricted with her fluids. The holter monitor is the first step in confirming whether or not the arrythmia has also subsided and whether or not we can start weaning her from the amiodarone. It's less than idea for long term use because of impact on the thyroid, so the sooner we can get her off of it the better.
Miss Liv's personality is coming back in spades these days. She's very quick to laugh, but also still very quick to cry. Nightmares are still going on but I think they're spacing out a little better. Breaks your heart after a nightmare when she wants to confirm she doesn't have to go to the doctor. Once she hears that she gets to hang out and play, she settles in nicely. Only two years old but her guard is up and she wants to make sure she gets to stay in the place she's loved and comfortable.
Wednesday, June 13, 2012
How It's Going
Heart wise, until the echo is done next week - Olivia looks great. Her activity level is up and you can tell she just feels a little better every day regaining her confidence to walk and do things on her own. Speech therapy started up again yesterday as well and the therapist was very pleased that verbally Olivia hasn't regressed at all.
The gagging/vomiting is still going on, she's now using it as a tool in her negotiation arsenal. Real downside to this is that she's now refusing to finish all of her milk that has her meds crushed in there - to push it is to be rewarded with real throw up; to let it go means that she's possibly not finishing her meds.
Her appetite seems like it's decreasing but I think her tummy is still getting acclimated to this new blood flow and the fluid restriction is also messing with her digestion. Everything moves much more slowly. Poor Livster. One chest tube site is healed well enough to leave without a bandaid, the other still needs some protection. Her incision site is still really swollen in one area making her look a little pigeon chested. The IV site that she kicked out on her right foot is now wrapped in Second Skin and hopefully gets better soon, not a serious wound but she really did hack herself pretty well there.
Sleep had been going better, she wants to stay up until 9 or later which we've been indulging in hopes of her sleeping at until 6 or 7am, but this week that's not even happening. Last night she had another nightmare or anxiety attack when she woke up in the middle of the night and couldn't find her Dada. Those make nights extra long and the following work day a bit more painful.
It seems nothing is of real concern but every time something goes differently than the normal path, I do have heightened awareness and want to watch her like a hawk. Any change of behavior, eating, sleep could be a sign of cardiac distress but yet there's nothing really pointing to that. She is relatively happy but in the moments that she cannot express what she wants - the tears come fast and fierce. We are all just hanging tight for things to normalize and they will, it will just take time.
The gagging/vomiting is still going on, she's now using it as a tool in her negotiation arsenal. Real downside to this is that she's now refusing to finish all of her milk that has her meds crushed in there - to push it is to be rewarded with real throw up; to let it go means that she's possibly not finishing her meds.
Her appetite seems like it's decreasing but I think her tummy is still getting acclimated to this new blood flow and the fluid restriction is also messing with her digestion. Everything moves much more slowly. Poor Livster. One chest tube site is healed well enough to leave without a bandaid, the other still needs some protection. Her incision site is still really swollen in one area making her look a little pigeon chested. The IV site that she kicked out on her right foot is now wrapped in Second Skin and hopefully gets better soon, not a serious wound but she really did hack herself pretty well there.
Sleep had been going better, she wants to stay up until 9 or later which we've been indulging in hopes of her sleeping at until 6 or 7am, but this week that's not even happening. Last night she had another nightmare or anxiety attack when she woke up in the middle of the night and couldn't find her Dada. Those make nights extra long and the following work day a bit more painful.
It seems nothing is of real concern but every time something goes differently than the normal path, I do have heightened awareness and want to watch her like a hawk. Any change of behavior, eating, sleep could be a sign of cardiac distress but yet there's nothing really pointing to that. She is relatively happy but in the moments that she cannot express what she wants - the tears come fast and fierce. We are all just hanging tight for things to normalize and they will, it will just take time.
Friday, June 8, 2012
Fontan Follow Up & Throw Up
Yesterday was a first for Olivia and I. The first time ever going to the hospital for a cardiology appointment just her and I. People offered to go with us and Nonna was almost packed up in the car ready for the trip but Liv is still having a super hard time warming up to me right now (peanut gallery reserve your comments). There is something very about my presence and physical touch to her little body that makes her think of a portion of her hospital stay. She is literally scared when I get to the house to relieve the Grandmas and it takes a good forty-five minutes to get her to warm up to me. By the end of every night she's always giving me hugs and kisses, but it's not like it was pre-Fontan in the least.
Anyway, to make a long story short, I needed to take her to the lab first to get her INR drawn and see how the new Coumadin dose is going, how's liver function and sodium levels. Then we were off to Card Clinic to see everyone and get the run down there. I thought for sure she had an echo is store for her but they listened to her chest, reviewed her vitals and said that she could come back in 2-3 weeks - that it was completely up to Brian and my discretion. However be prepared they will be doing an echo during that visit and she'll need a holter monitor again before they think about weaning her off her arrhythmia medicine. No meds were tweaked this visit, but on the plus side the staff took mercy on her and has okayed giving her 4 additional ounces of fluid per day. All in all a great visit and Liv didn't even seem to resent me for the day's turn of events; at least that was how I interpreted it.
Little did I know Stinkerbell had other plans for me. On the way back to the house from the hospital missy dozed off while I navigated highway traffic. Not too far from both grandparents house she woke up and started coughing like maybe saliva went down the wrong pipe and then very quickly was followed by her milk, her lunch and just about anything else she'd eaten in recent history. The next two minutes were the scariest moments of my life - I don't think that's an understatement. She was choking, I was on the far left lane with no shoulder and had to veer across 4 lanes of traffic going about 70 mph while keeping an eye on her, finding a place to stop on the shoulder and getting out to help. By the time I got around to her side, it seemed like she had cleared whatever she had been choking on, but my hands were still shaking. I just had this horrible thought that she had made it through some of the toughest weeks in her entire life and this - this ordinary normal coughing fit had become life threatening because of a bad gag reflex? The irony just seemed so cruel. After a state trooper chased me off the highway in the midst of my cleanup I tried my parents first, no dice. Swung by Brian's parents where Grammy saved the day. She stripped Liv down and made the genius suggestion that I switch car seats with her so she could clean up my wrecked one and Liv could ride in comfort and cleanliness. After 30 minutes we were back on the road, Liv was no worse for wear but I think I'm still freaked out. I didn't sleep last night listening to all her sounds in the monitor and just laid there thinking once again what could have been. Motherhood is definitely not for the faint of heart.
Anyway, to make a long story short, I needed to take her to the lab first to get her INR drawn and see how the new Coumadin dose is going, how's liver function and sodium levels. Then we were off to Card Clinic to see everyone and get the run down there. I thought for sure she had an echo is store for her but they listened to her chest, reviewed her vitals and said that she could come back in 2-3 weeks - that it was completely up to Brian and my discretion. However be prepared they will be doing an echo during that visit and she'll need a holter monitor again before they think about weaning her off her arrhythmia medicine. No meds were tweaked this visit, but on the plus side the staff took mercy on her and has okayed giving her 4 additional ounces of fluid per day. All in all a great visit and Liv didn't even seem to resent me for the day's turn of events; at least that was how I interpreted it.
Little did I know Stinkerbell had other plans for me. On the way back to the house from the hospital missy dozed off while I navigated highway traffic. Not too far from both grandparents house she woke up and started coughing like maybe saliva went down the wrong pipe and then very quickly was followed by her milk, her lunch and just about anything else she'd eaten in recent history. The next two minutes were the scariest moments of my life - I don't think that's an understatement. She was choking, I was on the far left lane with no shoulder and had to veer across 4 lanes of traffic going about 70 mph while keeping an eye on her, finding a place to stop on the shoulder and getting out to help. By the time I got around to her side, it seemed like she had cleared whatever she had been choking on, but my hands were still shaking. I just had this horrible thought that she had made it through some of the toughest weeks in her entire life and this - this ordinary normal coughing fit had become life threatening because of a bad gag reflex? The irony just seemed so cruel. After a state trooper chased me off the highway in the midst of my cleanup I tried my parents first, no dice. Swung by Brian's parents where Grammy saved the day. She stripped Liv down and made the genius suggestion that I switch car seats with her so she could clean up my wrecked one and Liv could ride in comfort and cleanliness. After 30 minutes we were back on the road, Liv was no worse for wear but I think I'm still freaked out. I didn't sleep last night listening to all her sounds in the monitor and just laid there thinking once again what could have been. Motherhood is definitely not for the faint of heart.
Tuesday, June 5, 2012
Worth Her Weight in Gold
My dad likes to say that Olivia's worth her weight in gold. Today as we were chit chatting about his visit with her, I decided to look up what gold was actually trading at. As it turns out, gold is currently going for $1,616 per ounce. Olivia weighs about 27lbs which in gold costs $698,112.00. Therefore, Olivia with all her medical procedures alone plus the oodles and oodles of love she has from everyone that knows her - she's worth wayyyy more than that!
Don't worry Livvy, even though you dislike me right now and think Mommy is to blame for all your ouchies, I still think you're precious and wouldn't trade you for any gold or gem in the world.
Don't worry Livvy, even though you dislike me right now and think Mommy is to blame for all your ouchies, I still think you're precious and wouldn't trade you for any gold or gem in the world.
Monday, June 4, 2012
Weekend Update
Olivia continues to make big improvements, this weekend scooting herself around in her playroom and getting motivated enough to even walk from one room to the other. She's still milking for additional attention and all her grandparents and Dada are happy to give it to her. (knock on wood) I think a chocolate milk cocktail might be the way to get her meds in her. 2oz of Whole Milk with 2oz of Chocolate milk, the crushed meds and a little extra chocolate syrup for good measure. The key is handing the sippy cup over to her and then letting her be; she will down it immediately. If you sit around to watch her she won't drink any - little stinker!
Sleep is a completely different story; naps have improved dramatically but she does wake often throughout the night whispering or screaming for her Dada. Sometimes its in a nightmare, other times she's wide awake and looking for him to come rescue her. Mama is still pretty much mud, only out of sheer desperation will she call for me. The one exception to that statement is food. If Miss Liv is hungry, she will ask me to fetch her food first. The little diva is very particular though, in her thought process I need to get her the food, but I am not allowed to actually feed it to her. That job is again only reserved for Dada. Today is Brian's first day at work in two weeks, I'm interested to hear how Liv fares without her BFF.
Incision looks so nice, swelling and inflammation are really minimized now and it's so pretty and smooth. Her chest tube sites though are not for the faint of heart. With previous surgeries the sites have always been stitched close but when they heal the skin always looks puckered like a mini belly button. This time the idea is by leaving them open and allowing them to close naturally they will be nice smooth flat scars. Let me tell you how horrified I was when Brian took of the band aids on them yesterday, again not being a squeamish person but I felt faint. They will be the first thing I show the staff this Thursday when I take Liv back in for her first outpatient echo since the surgery. Her poor little foot where she ripped out the IV is looking pretty sad too. I can only blame some of this on the Coumadin. Everything else looks really good and she is getting stronger daily. I'll post some pics of Team Olivia at the Hope 5K walk from this past weekend and of course some updated shots of the star of the show...er blog.
Sleep is a completely different story; naps have improved dramatically but she does wake often throughout the night whispering or screaming for her Dada. Sometimes its in a nightmare, other times she's wide awake and looking for him to come rescue her. Mama is still pretty much mud, only out of sheer desperation will she call for me. The one exception to that statement is food. If Miss Liv is hungry, she will ask me to fetch her food first. The little diva is very particular though, in her thought process I need to get her the food, but I am not allowed to actually feed it to her. That job is again only reserved for Dada. Today is Brian's first day at work in two weeks, I'm interested to hear how Liv fares without her BFF.
Incision looks so nice, swelling and inflammation are really minimized now and it's so pretty and smooth. Her chest tube sites though are not for the faint of heart. With previous surgeries the sites have always been stitched close but when they heal the skin always looks puckered like a mini belly button. This time the idea is by leaving them open and allowing them to close naturally they will be nice smooth flat scars. Let me tell you how horrified I was when Brian took of the band aids on them yesterday, again not being a squeamish person but I felt faint. They will be the first thing I show the staff this Thursday when I take Liv back in for her first outpatient echo since the surgery. Her poor little foot where she ripped out the IV is looking pretty sad too. I can only blame some of this on the Coumadin. Everything else looks really good and she is getting stronger daily. I'll post some pics of Team Olivia at the Hope 5K walk from this past weekend and of course some updated shots of the star of the show...er blog.
Friday, June 1, 2012
Oh the Meds
This is an SOS to any parent who has had a child that makes it terrible to give them meds, whether it be liquid tylenol that's supposed to taste semi decent or some serious stuff like blood pressure meds. Olivia is just not having any of her meds now. I had suggestions to grind down her pill form, dilute them in some of her favorite liquids and I thought that it worked after her first ounce was down. That was until she refused to take the rest and Brian spent the rest of the night trying to re-dilute the meds into the remaining balance of Liv's fluid quota. Worse still was she really refused to take down any fluid for a while.
The crushed up meds in food isn't working either as the projectile vomit yesterday indicated. It's amazing, I've never seen such a small kid start gagging at the site of a syringe or food they suspect might have meds. This is before she actually takes a bite of said food mind you. It is becoming a huge chore and more importantly a real concern that she's not getting some of the proper doses of these meds and I'm sort of my wits end for new ideas. If you've got any, please leave a comment below!
The crushed up meds in food isn't working either as the projectile vomit yesterday indicated. It's amazing, I've never seen such a small kid start gagging at the site of a syringe or food they suspect might have meds. This is before she actually takes a bite of said food mind you. It is becoming a huge chore and more importantly a real concern that she's not getting some of the proper doses of these meds and I'm sort of my wits end for new ideas. If you've got any, please leave a comment below!
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