Brian politely reminded me tonight that I promised to update after our appointment yesterday and hadn't yet done so. We had a pretty long appointment yesterday and Livvy was a little crank. Luckily by the time we got to the echo portion, she had already fussed herself to sleep. Good thing too since the echo lasted about 45 minutes.
All in all, nothing but good news to report. The echo looked good, sats are in a good range, weight gain is right on track and funnily enough she shrank from our last appointment! Apparently the height measurement was wayyy off last time so she looked like she shrank 1.5 cm. Oh well, everything is was right in line so Dr. Husayni is very happy with the progress. At this rate, surgery will be late July/early August, which is fine with us.
Tomorrow we're going to a family picnic, hopefully all the fresh air will bring lots of good sleep for the little one. No worries, the doctors signed off on the event!
Cinder-Livvy
Saturday, May 29, 2010
Thursday, May 27, 2010
Angel Babies
Disclaimer: The following content is sad, so if please skip if you are having a rough day
It is a fact of life that babies and kids with CHD's do face a higher mortality rate than the average child. Children with HLHS have even worse odds given the severity of the defect. In a few more days it will be the first birthday of our heart friend Kaia. Kaia was born with HLHS and passed a few weeks after her Norwood operation. I have been in touch with Kaia's mom ever since we got Olivia's diagnosis and she has been inspirational to me. Stephanie has chosen to honor Kaia's life by creating pieces of fabric art and other projects under the business Little Lion Designs http://www.littleliondesigns.com/ - which was their nickname for Kaia. We have a piece by Stephanie titled Olivia's Garden that hangs in her nursery today and it is beyond beautiful. It obviously carries special meaning for us given the story behind its creation. Even though the loss of their daughter is a daily struggle, they have found ways to cope and move forward while keeping the memory of their daughter with them. That fact gave me hope that knowing these heart parents can move on and continue spread awareness of CHD's to others while also finding fulfillment in daily life made me feel a sense of peace prior to Olivia's arrival. I think of Kaia daily when I'm Olivia's room looking at that artwork and smile that she's watching over Olivia now.
Sadly, another family lost their little girl Maia yesterday to complications from HLHS. Maia was ten months old and had completed both the Norwood and Glenn procedures. I looked through much of their familys blog this morning and what hit me the hardest was looking through pictures of Maia throughout her life. If I had not known her diagnosis and excluded any picture in the hospital, she looked like a completely healthy baby much like Olivia. She had big beautiful brown eyes and a full head of silky dark hair, again reminding me of Olivia.
It is easier for me to comprehend letting go of a little one when you know they have been suffering or there is nothing more that can be done to give them a good quality of life. But when these babies look like they are on the road to recovery only to be gone shortly thereafter, it is harder to understand or accept. I know it is the reason that Brian and I have adopted the cautiously optimistic attitude that we have had thus far on our journey, but even I am getting spoiled by having so many good days in a row. Sometimes I forget or deny that soon we will be back in the hospital and handing over Olivia once again for another surgery. Today was just a splash of cold water bringing me back down to reality. Tomorrow we have another appointment at Hope, I will make sure to post an update when I have access to a computer.
Good night and sweet dreams to all the little angels out there
It is a fact of life that babies and kids with CHD's do face a higher mortality rate than the average child. Children with HLHS have even worse odds given the severity of the defect. In a few more days it will be the first birthday of our heart friend Kaia. Kaia was born with HLHS and passed a few weeks after her Norwood operation. I have been in touch with Kaia's mom ever since we got Olivia's diagnosis and she has been inspirational to me. Stephanie has chosen to honor Kaia's life by creating pieces of fabric art and other projects under the business Little Lion Designs http://www.littleliondesigns.com/ - which was their nickname for Kaia. We have a piece by Stephanie titled Olivia's Garden that hangs in her nursery today and it is beyond beautiful. It obviously carries special meaning for us given the story behind its creation. Even though the loss of their daughter is a daily struggle, they have found ways to cope and move forward while keeping the memory of their daughter with them. That fact gave me hope that knowing these heart parents can move on and continue spread awareness of CHD's to others while also finding fulfillment in daily life made me feel a sense of peace prior to Olivia's arrival. I think of Kaia daily when I'm Olivia's room looking at that artwork and smile that she's watching over Olivia now.
Sadly, another family lost their little girl Maia yesterday to complications from HLHS. Maia was ten months old and had completed both the Norwood and Glenn procedures. I looked through much of their familys blog this morning and what hit me the hardest was looking through pictures of Maia throughout her life. If I had not known her diagnosis and excluded any picture in the hospital, she looked like a completely healthy baby much like Olivia. She had big beautiful brown eyes and a full head of silky dark hair, again reminding me of Olivia.
It is easier for me to comprehend letting go of a little one when you know they have been suffering or there is nothing more that can be done to give them a good quality of life. But when these babies look like they are on the road to recovery only to be gone shortly thereafter, it is harder to understand or accept. I know it is the reason that Brian and I have adopted the cautiously optimistic attitude that we have had thus far on our journey, but even I am getting spoiled by having so many good days in a row. Sometimes I forget or deny that soon we will be back in the hospital and handing over Olivia once again for another surgery. Today was just a splash of cold water bringing me back down to reality. Tomorrow we have another appointment at Hope, I will make sure to post an update when I have access to a computer.
Good night and sweet dreams to all the little angels out there
Happy 2 Months!
Olivia you are two months old today! Daddy and I cannot believe how quickly time is flying with you
Here are some of the things you are currently doing:
Here are some of the things you are currently doing:
- Sleeping through the night unless you're really hungry then you wake up around 2 or 3 for a bottle
- You're taking anywhere from 3 - 4 oz per feeding
- You currently weigh 10lbs 5oz and are 24 inches long
- Bathtime is one of your favorite things to do, I've been putting you in the tub and letting you splash around before I wash you because you enjoy it so much
- You smile at pretty much anyone that is willing to give you direct eye contact and talk to you
- You're so close to rolling over on your tummy and are getting mad that it's not happening
- When Mommy and Daddy hold you upright you move your own head and neck around a lot - you are so strong that I have to strap you in your bouncy seats because you can now wiggle your way out
Tuesday, May 25, 2010
Cruising Right Along
So we had our weekly home nurse visit and Olivia is now tipping the scales at a whopping 10lbs 5oz. She also looks very long but we'll have to wait and see until Friday's Heart Clinic visit to get the specifics on her length and head circumference.
Since summer has now decided to hit us full force we have really been very house bound because I don't want to take her out in this heat. Hopefully the weather will cool off enough after dinner tonight that we can go for a little family walk in the neighborhood. In the meantime during down moments, I've been trying to read the same book for about a week now. Pre-baby I could read an entire 400 page book cover to cover in a day and a half. Those days are long long gone. If I read a chapter in a sitting now, that's relatively impressive.
Aunt Linda went back to Paris on Sunday and it was sad that she was leaving us, but since we can skype it's not like she's totally cut off from the family. Uncle Sean is also off to Europe for the summer to study abroad. It's hard not to be a little envious of our world travelers, but then again at this point I'm just besides myself with excitement when Olivia lets us have anything more than four hours of consecutive sleep. So I suppose this is just a case of a change in perspective when becoming a parent.
Since summer has now decided to hit us full force we have really been very house bound because I don't want to take her out in this heat. Hopefully the weather will cool off enough after dinner tonight that we can go for a little family walk in the neighborhood. In the meantime during down moments, I've been trying to read the same book for about a week now. Pre-baby I could read an entire 400 page book cover to cover in a day and a half. Those days are long long gone. If I read a chapter in a sitting now, that's relatively impressive.
Aunt Linda went back to Paris on Sunday and it was sad that she was leaving us, but since we can skype it's not like she's totally cut off from the family. Uncle Sean is also off to Europe for the summer to study abroad. It's hard not to be a little envious of our world travelers, but then again at this point I'm just besides myself with excitement when Olivia lets us have anything more than four hours of consecutive sleep. So I suppose this is just a case of a change in perspective when becoming a parent.
Friday, May 21, 2010
It's really been four weeks?
Wow, how time flies! Olivia has been home for four weeks as of today. I really can't believe it, so obviously things have been going fairly smoothly or it would seem like eternity looking back. I have to laugh thinking back to the first weekend when Brian and I struggled to get showers or meals before the sun down each day. I have been so excited the last two weeks or so when Liv was sleeping about 6 hours straight at night, but those days were short lived. I think she's going through a growth spurt at the moment so she's back to being up every 3 hours or so for a bottle. Sometimes she goes right back to sleep, other times she's cooing and waving her little arms around when I pass out from exhaustion and she just keeps entertaining herself until she's back to sleep. My motto is: so long as she's fed, clean, safe and within earshot of me, I can sleep soundly regardless of her being awake.
It has been extremely refreshing this morning not scrambling around trying to get O and all her gear packed up to get down to Hope for the heart clinic. I am definitely loving having less appointments, however I think that the date for the Glenn is going to be sooner rather than later. She's already 10 pounds and very strong. When she gets herself into those major crying fits we can't even startle her anymore by blasting a gust of air in her face to get her to take that extra breath. She just cries right over us which is great because she's strong enough to do it, but also unfortunate because she just goes on and on longer and longer. On a plus side, it does take quite a bit more agitation for her to turn herself a nice shade a blue than it previously did, so I guess I can consider us lucky in that aspect.
Tomorrow our baby girl will be 8 weeks old and she's already lost that newborn cry-which I was actually pretty sad to hear. We are enjoying every minute with her; I'll be honest, Brian is enjoying every minute he spends with her, some of her meltdowns when it's just one on one with me I could do without. Either way, Olivia is always the best part of each of our days.
It has been extremely refreshing this morning not scrambling around trying to get O and all her gear packed up to get down to Hope for the heart clinic. I am definitely loving having less appointments, however I think that the date for the Glenn is going to be sooner rather than later. She's already 10 pounds and very strong. When she gets herself into those major crying fits we can't even startle her anymore by blasting a gust of air in her face to get her to take that extra breath. She just cries right over us which is great because she's strong enough to do it, but also unfortunate because she just goes on and on longer and longer. On a plus side, it does take quite a bit more agitation for her to turn herself a nice shade a blue than it previously did, so I guess I can consider us lucky in that aspect.
Tomorrow our baby girl will be 8 weeks old and she's already lost that newborn cry-which I was actually pretty sad to hear. We are enjoying every minute with her; I'll be honest, Brian is enjoying every minute he spends with her, some of her meltdowns when it's just one on one with me I could do without. Either way, Olivia is always the best part of each of our days.
Tuesday, May 18, 2010
Ouch!
Well Miss Olivia had a follow up appointment today at the Pediatrician and for the most part it was uneventful. She is now in the 90th percentile for height, but still at 39th percentile for weight so she just has to keep on packing on the ounces. The only rough part for Olivia was at the end of the visit where she received her first Hepatitis B vaccine which is the first in a series of 3. Luckily I gave her a dose of Tylenol before the shot, but she still screamed the saddest scream ever as the shot was actually given. I scooped her up and she was very easily consoled within a minute or two. I was pretty impressed but I imagine given all that she's already been through the shot isn't too bad for her to deal with in terms of pain.
On a very happy note, she is smiling and starting to coo! I had her in her little vibrating seat last night and was talking to her when she gave me a big gummy grin. Brian came over to check it out and started to talk to her and Olivia gave her Daddy even more smiles. This morning she laid on the couch looking up at the skylights and talked to herself for amusement. She stayed like that for about an hour without needing any interaction from me whatsoever. Given how much she's wiggling around we're not going to be able to leave her like that on the couch much longer. I think in another week or two she's going to turn on her tummy all by herself. We are definitely at the point with Olivia where each day is bringing something new for her in terms of development. It's very exciting and rewarding for Brian and I to watch her grow.
On a very happy note, she is smiling and starting to coo! I had her in her little vibrating seat last night and was talking to her when she gave me a big gummy grin. Brian came over to check it out and started to talk to her and Olivia gave her Daddy even more smiles. This morning she laid on the couch looking up at the skylights and talked to herself for amusement. She stayed like that for about an hour without needing any interaction from me whatsoever. Given how much she's wiggling around we're not going to be able to leave her like that on the couch much longer. I think in another week or two she's going to turn on her tummy all by herself. We are definitely at the point with Olivia where each day is bringing something new for her in terms of development. It's very exciting and rewarding for Brian and I to watch her grow.
Sunday, May 16, 2010
The Christening
We were very very happy that Great Grandma and Grandpa Donnelly as well as Uncle Brian and Aunt Kari were all able to fly in and share the special day with us. We took a picture of Olivia with her two grandmothers and two great grandmothers as well as another picture with her great grandpa and the two grandpas. I think that she's extremely lucky to have so many members of the extended family still around and able to be present for occasions like her Christening. Everyone adored her and commented as to what a wonderful baby Olivia is but even Uncle Sean had to chime in that he's been witness to her worse moments when even earplugs won't dull the sound of her displeasure. Of course I realize that all of Olivia's admirers are biased and hardly believe such stories of her acting anything other than angelic. You can see from the pictures that she did look fairly angelic and I have lost any argument indicating otherwise.
It was truly a great night surrounded with lots of loving family to be here for our baby girl and one of the first religious milestones in her life.
5/14 Visit at Hope
The Friday morning visit to Hope didn't really start out that well. We were supposed to be seen by 10:30 and were still waiting at 11:30. Finally they called us back and Olivia couldn't have behaved better. She let the nurse do all her vitals and weight without a peep. She was only weighing in at 9lbs 2oz but she grew 3/4 of an inch from the prior week's visit. So she's now measuring in at 23 1/4" long, which is great.
After the nurse was done with us, Dr. Husayni and his APN's came in to do their assessment. They're very pleased with her growth, sats, and overall appearance. So much so that we now only have to go in for visits every other week! After all that waiting our entire appointment was about 10 minutes long. No complaints on our end, we rushed home to start finish up the preparation for the christening which was taking place later that night at our house.
After the nurse was done with us, Dr. Husayni and his APN's came in to do their assessment. They're very pleased with her growth, sats, and overall appearance. So much so that we now only have to go in for visits every other week! After all that waiting our entire appointment was about 10 minutes long. No complaints on our end, we rushed home to start finish up the preparation for the christening which was taking place later that night at our house.
Monday, May 10, 2010
Mother's Day
Now I realize in the whole scheme of things, it's just another day. But I also know that if Olivia hadn't made it through everything, yesterday would have really highlighted that loss. Brian gave me the most incredible picture of Olivia in black and white and it is now one of my most prized possessions. I definitely want to make it a point to try and get such a picture for each of our future babies to make a little gallery in our house. Either way, yesterday was fantastic and very memorable for me.
I hope all that read this had a very Happy Mother's Day as well whether you're an Aunt, Godmother, Step-Mother etc, you all have an important role in someone's life.
Saturday, May 8, 2010
Weekend Update
So Olivia had her weekly appointment at the Heart Clinic yessterday and it was a breeze. She gained 5 ounces since last week and all her vitals looked good. She didn't need an echo because hers from last week looked so good so that saved us about 45 minutes on the visit and then we were told that OT/PT only want to meet with us every other week since she has great range of motion and muscle tone. The only downer of the appointment for Olivia was when Dr. Husayni cut a few of her stitches that were poking through the incision site. She was definitely not a fan of that little procedure and let her displeasure well known.
Today was Brian's graduation from UIC with his MBA. We trekked downtown to see him walk and go through the entire ceremony. Let me preface this by saying that I had the doctor's okay to go out with the baby to public places so long no strangers are touching her, she stays away from little kids under the age of 12, and anyone who holds her is of good health and properly washes their hands. Anyway, Olivia was great throughout the program, but my lord, it is ridiculous the amount of stuff that a little baby needs to go out and about. My car was pretty much stuffed to the gills with anything that we needed or could need for the day. We are very proud of Brian and it was really important for us to be there today to support him and celebrate his huge accomplishment. He has been doing more than his share of helping with Olivia while she was in the hospital and now that she's been home and all the while trying to juggle his work load as well as wrapping up school so it was the least we could do for him in return. I can't wait to post pics of Olivia with Daddy in his cap and gown.
Today was Brian's graduation from UIC with his MBA. We trekked downtown to see him walk and go through the entire ceremony. Let me preface this by saying that I had the doctor's okay to go out with the baby to public places so long no strangers are touching her, she stays away from little kids under the age of 12, and anyone who holds her is of good health and properly washes their hands. Anyway, Olivia was great throughout the program, but my lord, it is ridiculous the amount of stuff that a little baby needs to go out and about. My car was pretty much stuffed to the gills with anything that we needed or could need for the day. We are very proud of Brian and it was really important for us to be there today to support him and celebrate his huge accomplishment. He has been doing more than his share of helping with Olivia while she was in the hospital and now that she's been home and all the while trying to juggle his work load as well as wrapping up school so it was the least we could do for him in return. I can't wait to post pics of Olivia with Daddy in his cap and gown.
Thursday, May 6, 2010
What day is it?
So up until last night around 8, I thought it was the 4th of May. How sad was I when I realized that I had completely missed Cinco de Mayo and all the festivities associated with it. It's not like I was looking to go swimming in a pool of margaritas or anything but I just couldn't believe I had been dating everything incorrectly all week long - I'm still not exactly sure where I lost an actual day but it happened.
Olivia had a great night and slept almost 6 hours straight, which sort of makes me nervous because around 4 hours of solid sleep I woke up and got everything ready for her bottle just anticipating her to wake up demanding it. First 15 minutes went by, then 30 and I was still waiting watching Law & Order until I must have fallen asleep out of exhaustion. When Brian's alarm went off around 5:30 I nearly jumped out of bed thinking that I slept through the baby's crying. Nope, there she was still snoozing away to my pleasant surprise. The sleep must have done her well because she was pretty easy going today (knock on wood).
Tomorrow we have another appointment at Hope for a checkup and tomorrow night Brian and I are going to try our first date out. Saturday morning is Brian's graduation and Sunday is Mother's Day. Big big weekend for us!
Olivia had a great night and slept almost 6 hours straight, which sort of makes me nervous because around 4 hours of solid sleep I woke up and got everything ready for her bottle just anticipating her to wake up demanding it. First 15 minutes went by, then 30 and I was still waiting watching Law & Order until I must have fallen asleep out of exhaustion. When Brian's alarm went off around 5:30 I nearly jumped out of bed thinking that I slept through the baby's crying. Nope, there she was still snoozing away to my pleasant surprise. The sleep must have done her well because she was pretty easy going today (knock on wood).
Tomorrow we have another appointment at Hope for a checkup and tomorrow night Brian and I are going to try our first date out. Saturday morning is Brian's graduation and Sunday is Mother's Day. Big big weekend for us!
Tuesday, May 4, 2010
Hats Off
Olivia's been home about 10 days now and really I've only been parenting her since she made it to the step down unit which was 2 weeks ago today. In those 2 weeks I have never been more tired, frustrated and in love with anyone in my life. It has not taken me long to realize how in the world to single parents make it all work? Brian bears the brunt of her care on the weekends to give me a break and I handle the middle of the night feedings during the week, but to imagine doing 100% of all the work all the time is just overwhelming. Even moreso I know that there are single parents out there that have heart babies or babies with other defects and that makes me so sad that they have to go through all of the appointments and procedures alone.
Hats off to involved extended families as well. Everyone in both of our families has been keeping up with Olivia via this blog or facebook and has been more than supportive of us throughout everything since the diagnosis last year around Thanksgiving. Their help big or small has been so helpful to us on a daily or weekly basis and just lets us know that they're out there rooting for us and Olivia's success. My mom deserves a huge amount of appreciation and gratitude as well given that she's been by fairly often since we came home and keeps our house in an orderly fashion while I'm focusing on the little one. She cleans the kitchen, washes/sterilizes bottles and would do anything that I asked of her without any fuss - overall just happy to be helpful.
At the end of each day I'm aware that our road would be much tougher without all these wonderful people in our lives. I definitely have to buy a Mega Millions lotto ticket for tonight's drawing, I've got a lot of family to share it with if we hit the big one! Not that money buys happiness as we already well know, but it couldn't hurt either!
Hats off to involved extended families as well. Everyone in both of our families has been keeping up with Olivia via this blog or facebook and has been more than supportive of us throughout everything since the diagnosis last year around Thanksgiving. Their help big or small has been so helpful to us on a daily or weekly basis and just lets us know that they're out there rooting for us and Olivia's success. My mom deserves a huge amount of appreciation and gratitude as well given that she's been by fairly often since we came home and keeps our house in an orderly fashion while I'm focusing on the little one. She cleans the kitchen, washes/sterilizes bottles and would do anything that I asked of her without any fuss - overall just happy to be helpful.
At the end of each day I'm aware that our road would be much tougher without all these wonderful people in our lives. I definitely have to buy a Mega Millions lotto ticket for tonight's drawing, I've got a lot of family to share it with if we hit the big one! Not that money buys happiness as we already well know, but it couldn't hurt either!
Monday, May 3, 2010
9lbs!
Another milestone for Olivia. She is now tipping the scales at 9lbs as of this morning's nurse visit. She has put on an entire pound since she came home from the hospital which seems ridiculous to me, but her medical team is thrilled with it so then I'm happy too.
Olivia has discovered her hands quite well over the last few days and can reach out for things now. She has been taking 3oz bottles at one feeding which is a definite accomplishment and probably contributing to her weight gain. This weekend she slept for five hours at once and I woke up in a panic because she hadn't woken me up first. But there she was snug as a bug in a rug sawwing away some zzz's.
Today she also took her first bath without screaming bloody murder, she just hung out the whole time and looked like she enjoyed herself. Relaxation has been key for us, she just looks so much more at ease. Whether she's in her Boppy or just hanging out on the couch, she can lay there for quite some time entertaining herself and checking out the scene. She looks like she wants to know everything that's going on and I'm sure after weeks of staring at the same room in the hospital, anything seems more entertaining than that. After lunch today we're going to go out for a walk and take advantage of the beautiful weather before Brian comes home. Thank goodness for beautiful sunny days!
Olivia has discovered her hands quite well over the last few days and can reach out for things now. She has been taking 3oz bottles at one feeding which is a definite accomplishment and probably contributing to her weight gain. This weekend she slept for five hours at once and I woke up in a panic because she hadn't woken me up first. But there she was snug as a bug in a rug sawwing away some zzz's.
Today she also took her first bath without screaming bloody murder, she just hung out the whole time and looked like she enjoyed herself. Relaxation has been key for us, she just looks so much more at ease. Whether she's in her Boppy or just hanging out on the couch, she can lay there for quite some time entertaining herself and checking out the scene. She looks like she wants to know everything that's going on and I'm sure after weeks of staring at the same room in the hospital, anything seems more entertaining than that. After lunch today we're going to go out for a walk and take advantage of the beautiful weather before Brian comes home. Thank goodness for beautiful sunny days!
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