This weekend a family wedding gave us the opportunity to introduce Olivia to many extended family members and out of town friends that she'd never met before. Just because she hadn't met them didn't mean that they didn't know all about her. So many people recalled their most favorite blog entries, others knew all sorts of her little bio facts and everyone was able to see firsthand just so well our girl is doing right now. We clearly felt the love and support that you have been virtually wishing us dating back to Olivia's diagnosis in utero and I just wanted to again voice my appreciation for all of the well wishes. I do apologize for "No Nap Olivia" I had really hoped that we could get Little Miss Missy out to smile and bat her beautiful eyes at all her faithful and loyal admirer - but no dice there.
Here's some FAQ's just to give the highlight or overview of our current status:
Q: What's the timeline for Olivia's next surgery?
A: We were told early on that she was on target around age 2 - we have another cardiology appointment in July that will be complete with an echo and that might require an additional heart cath so we should have a more definitive game plan after that
Q: How many meds is Olivia currently on?
A: She's on .5ml of Enalapril (BP medication) right now along with half a baby aspirin daily and then two vitamins
Q: Are the doctors just thrilled with her progress?
A: Yes, they are very pleased with how she's doing. Mommy is so pleased and appreciative but always looking for a physiological explanation for Olivia's current success - any and all information in the way of these HLHS babies would be helpful to help future cases
Q: What sort of extra care does Olivia require?
A: Not much at this point (knock on wood) - we like to avoid anyone that may be sick or in contact with anyone who's currently sick to keep germs to a minimum, now during the summer she will require a little extra attention when we're outdoors to make sure she doesn't overheat, and as is our norm watching for any signs of cardiac distress
Q: Last but certainly not least - What's Olivia's long term prognosis?
A: That is a really hard question and we don't have an answer for it. Our life could take a dramatic turn after the Fontan - short term or long term. She has done so well through the first two surgeries that you'd like to think we'd expect the same this next go around but that's just not the way things work. The last surgery deals with the blood flow to the lower half of the body and there are complications and life altering changes that could potentially be a result from the new circulation. Even past the Fontan; Olivia will always have half a heart and that's just not the norm nor are there decades worth of history to help educate the doctors treating these patients. They're still writing the user manual so to speak. So all we can do is hope for the best and live each day that we have to the fullest.
Thank you all again!
Much Love,
Lisa
Cinder-Livvy
Tuesday, May 31, 2011
Monday, May 23, 2011
The Bedtime Battle and Crying it Out
We've been having a struggle with Olivia and her sleeping habits at night since at least after her last round of teeth in January. She would wake up two-three times a night if nothing else just for reassurance that someone would hear her cries and come to her. After a few months of sleep deprivation, Brian and I had reached our limits and knew we had to change it up. We are really good about keeping her on a schedule and responding to her cues of when she's ready to go to bed for the night, but we weren't great about keeping her bedtime routine consistent. It's in my family's nature to be creatures of habit and Lil Miss is no different, she likes her schedule to be followed and lets us know when it's not by getting a little crazed.
So new routine went into effect about four weeks ago and consisted of heading up to the nursery with one parent-usually armed with the last bottle for the evening, a book, the pacifer and a burp cloth. We would try to read to Olivia while she was taking her bottle, then give her the pacifier and let her curl up and go to sleep in our arms in the glider before making the transfer to her crib. Week one was awesome for me, we wouldn't even finish the book before eyelids were getting heavy and she'd be off in the land of dancing sugarplums. I'd make the transfer, she'd promptly curl up and would only wake up once in the middle of the night if she was in extreme need of a fresh diaper. Brian struggled, she would doze off for him but then look like trying to get a cat in a box when he would make the transfer to the crib. I could have her tucked in within about 15 minutes but he would be up there for an hour or more and she was more restless on the nights that he was responsible for. By the time week two rolled around, she was starting to fight me even though we agreed that I would be the one taking her up every night.
Last week it came to a head. I was home alone, trying the routine and she just wasn't having it but I knew she was exhausted since she halved her usual nap during the day. By the third time of taking her out of the crib (yes I know this is a no-no) I was confident that she was fed, dry, had her pacifier, burp cloth, lullabies were on and she could not possibly need anything else except to manipulate her exhausted Mommy a little bit more. So I made the tough decision to shut the door and walk away. I went into my room, put the baby monitor to the lowest volume setting and let her scream her little body till she was so exhausted and she fell asleep on her own. It was awful, but it worked. She slept the entire night! The next night I told Brian the plan and I laid her down again this time to listen to her for about 45 minutes - but again she slept the entire night. By the time I laid her down last night, she made one long wail when I shut her door but was already quiet by the time I made my way downstairs to the family room.
I hated doing it and it broke my heart, but her sleep pattern is so much better. I miss our nights of cuddling in the glider, but this is really better for everyone overall. Even daytime naps on the weekend when both of us are home are just so much better and she will take one 2.5 hour snooze consistently. Obviously the little white nubs of teeth that I see peeking through her gums are probably going to rock this boat, but for now the bedtime thing isn't such a chore for the first time since back to the Post-Glenn days and to steal a page from the McD's slogan - I'm lovin it!
So new routine went into effect about four weeks ago and consisted of heading up to the nursery with one parent-usually armed with the last bottle for the evening, a book, the pacifer and a burp cloth. We would try to read to Olivia while she was taking her bottle, then give her the pacifier and let her curl up and go to sleep in our arms in the glider before making the transfer to her crib. Week one was awesome for me, we wouldn't even finish the book before eyelids were getting heavy and she'd be off in the land of dancing sugarplums. I'd make the transfer, she'd promptly curl up and would only wake up once in the middle of the night if she was in extreme need of a fresh diaper. Brian struggled, she would doze off for him but then look like trying to get a cat in a box when he would make the transfer to the crib. I could have her tucked in within about 15 minutes but he would be up there for an hour or more and she was more restless on the nights that he was responsible for. By the time week two rolled around, she was starting to fight me even though we agreed that I would be the one taking her up every night.
Last week it came to a head. I was home alone, trying the routine and she just wasn't having it but I knew she was exhausted since she halved her usual nap during the day. By the third time of taking her out of the crib (yes I know this is a no-no) I was confident that she was fed, dry, had her pacifier, burp cloth, lullabies were on and she could not possibly need anything else except to manipulate her exhausted Mommy a little bit more. So I made the tough decision to shut the door and walk away. I went into my room, put the baby monitor to the lowest volume setting and let her scream her little body till she was so exhausted and she fell asleep on her own. It was awful, but it worked. She slept the entire night! The next night I told Brian the plan and I laid her down again this time to listen to her for about 45 minutes - but again she slept the entire night. By the time I laid her down last night, she made one long wail when I shut her door but was already quiet by the time I made my way downstairs to the family room.
I hated doing it and it broke my heart, but her sleep pattern is so much better. I miss our nights of cuddling in the glider, but this is really better for everyone overall. Even daytime naps on the weekend when both of us are home are just so much better and she will take one 2.5 hour snooze consistently. Obviously the little white nubs of teeth that I see peeking through her gums are probably going to rock this boat, but for now the bedtime thing isn't such a chore for the first time since back to the Post-Glenn days and to steal a page from the McD's slogan - I'm lovin it!
Wednesday, May 18, 2011
Blissfully Normal
I'm sorry, still slacking on the updates over here, but I assure you, no news is good news. Life with Olivia is as we could have only dreamed 18 months ago - and that's blissfully normal. She's flirting with the idea of walking; using this adorable little baby stroller that my cousin Jessica gave her for Christmas. She pushes it all over the family room and gets mighty peeved if she can't turn it or navigate it herself around an obstacle in her way. Currently she doesn't seem too interested in saying more words at this point, but instead has developed an almost constant use of her index finger to point to what she wants, it could be an object or it could be an indicator to the person carrying her at that moment to move on to the next room.
This past weekend she used her little index finger to point my dad on a little field trip around the first floor making sure he stopped at all the places that she wanted to check out before ultimately bringing him back to the family room where I was. We also confirmed this weekend that she is a great manipulator...of her father. It was an Olivia/Mommy weekend and I saw a completely different kid than the one that I see when her dad is around. She was super easy to deal with, listened to instructions - which I'll admit is impressive for a one year old, there was minimal whining and no tantrums thrown. Then, she gave me the BEST GIFT EVER and slept from about 8:45 on Saturday night until 8:45 Sunday morning. Yes, she took a bottle somewhere in there, but the point was, I slept for 8 straight hours!!! I panicked when I finally heard her over the monitor and glanced at the clock thinking I had slept through her cries or something, but there was Miss Livvy in her crib sitting up clearly just waking up with her hair all askew and rubbing the sleep from her eyes. Adorable! Needless to say, I think Brian was a bit miffed when I raved about our weekend and then he saw Miss Crankypants once more. She has not slept as well since our marathon of sleep from Saturday-Sunday.
Eating is still going so well, she continues to eat just about everything put in front of her. This week she had Greek food for the first time and chowed down like she's had it all her life. We're completely on whole milk now and just really trying to get the sippy cup to happen. She is so unhappy to see it regardless of what time of day we offer it up to her that I've sort of put it on the back burner as a priority. Since sleeping isn't going that great I think I might as well pull the plug on the pacifier at naps and nighttime and see how that goes.
The only hint that there's something additional lurking in the background as it pertains to Olivia's health is that I have to schedule another cardiology appointment and I know this one will include an echo. Blech
If you would have told me that sleeping, sippy cup usage and pulling the pacifier would be the biggest hurdles I'd have to face with my one year old Hypoplast a year ago, I probably would have laughed in your face - but it can happen...and Olivia's proof of that. If nothing else, to all you heart families out there, allow yourself the tiniest bit of hope for some normalcy in your day to day.
This past weekend she used her little index finger to point my dad on a little field trip around the first floor making sure he stopped at all the places that she wanted to check out before ultimately bringing him back to the family room where I was. We also confirmed this weekend that she is a great manipulator...of her father. It was an Olivia/Mommy weekend and I saw a completely different kid than the one that I see when her dad is around. She was super easy to deal with, listened to instructions - which I'll admit is impressive for a one year old, there was minimal whining and no tantrums thrown. Then, she gave me the BEST GIFT EVER and slept from about 8:45 on Saturday night until 8:45 Sunday morning. Yes, she took a bottle somewhere in there, but the point was, I slept for 8 straight hours!!! I panicked when I finally heard her over the monitor and glanced at the clock thinking I had slept through her cries or something, but there was Miss Livvy in her crib sitting up clearly just waking up with her hair all askew and rubbing the sleep from her eyes. Adorable! Needless to say, I think Brian was a bit miffed when I raved about our weekend and then he saw Miss Crankypants once more. She has not slept as well since our marathon of sleep from Saturday-Sunday.
Eating is still going so well, she continues to eat just about everything put in front of her. This week she had Greek food for the first time and chowed down like she's had it all her life. We're completely on whole milk now and just really trying to get the sippy cup to happen. She is so unhappy to see it regardless of what time of day we offer it up to her that I've sort of put it on the back burner as a priority. Since sleeping isn't going that great I think I might as well pull the plug on the pacifier at naps and nighttime and see how that goes.
The only hint that there's something additional lurking in the background as it pertains to Olivia's health is that I have to schedule another cardiology appointment and I know this one will include an echo. Blech
If you would have told me that sleeping, sippy cup usage and pulling the pacifier would be the biggest hurdles I'd have to face with my one year old Hypoplast a year ago, I probably would have laughed in your face - but it can happen...and Olivia's proof of that. If nothing else, to all you heart families out there, allow yourself the tiniest bit of hope for some normalcy in your day to day.
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