World Prematurity Day is November 17. This is a truly global event including groups from the USA, Europe, Australia, and Africa. To accompany this, the March of Dimes has declared all of November as Prematurity Awareness Month.
As you know, premature birth has touched our own life deeply, but furthermore, prematurity is a tremendous global challenge. In the USA, nearly one in eight babies is born prematurely. Worldwide, 13 million preemies are born each year, and many (including our Oliver and Charlotte) are unable to overcome the adversity of being born too early - prematurity is the leading cause of infant death in the USA and many other countries. Even for the babies (like Eliza) who are healthy and fortunate enough to survive, many face resulting long-term health challenges including developmental delays, learning disabilities, brain damage, chronic lung disease, low muscle tone, blindness, and/or cerebral palsy. (Half of all neurological disabilities in children are related to premature birth.)
Modern medicine has made it possible for so many more preemies to survive and thrive than was ever before possible (for which we are tremendously thankful on Eliza's behalf!), but it would be far better if premature birth could be prevented in the first place. The March of Dimes, and many other organizations, are working hard on this challenge, but until it's solved, the least we can all do is build awareness. Please help to spread the word about World Prematurity Day, and please take a minute or two on November 17th in honor of the preemies we know, the ones we remember, and the ones we've never had the chance to meet.
In closing, I wanted to share a link with you. Team Spectacular is a blog and webcomic, by and about a family with a son who was born premature at 24 weeks gestation. The whole comic is fun and touching, but in particular I recommend the Micro-Preemie Power storyline which retells the story of their son's birth and stay in the NICU in illustrated form. It's accurate, brutally honest, and heart-wrenching. Read it!
Wednesday, November 9, 2011
Tuesday, November 1, 2011
Where'd October go?
What do you mean, it's November already?! What happened to October?
Oh, right, it was a busy month! Sorry for the crickets here on the blog!
The month began with our memorial service for Charlotte and Oliver on October 1st, the anniversary of Charlotte's death last year. We held the service in Georgia at the church where their great-grandfather, great-great-grandmother, great-great-aunt, and other family members are buried. We dedicated a memorial marker placed in the family plot. Many of our families were in attendance; it meant so much to us to be reminded of how many people love our children and are touched by their loss. It was a difficult event to plan and attend but we're so glad to have done so. The memorial turned out beautifully and it's so reassuring to have a permanent marker in their honor.
October 8th, we went to Baby Claire's first birthday party - what an event it was, and how wonderful it was to see Claire and her family again!
Next, my parents came up for a long (long!) weekend to help plan and execute a long-awaited major re-landscaping of our front yard. We took out some azaleas and nandinas that hadn't been doing well in the full sun, removed the black plastic sheeting (!) that had been used in place of landscape cloth, uprooted tons of grass and weeds, planted all sorts of new plants and re-mulched the existing beds, added two new garden beds, installed a stepping-stone walkway down to the mailbox, and more!
...Hmm. Although I have plenty of "before" and "during" photos, I seem to have failed to take any finished "after" pictures. I will try to remedy that soon - take my word for it, it's a HUGE improvement. Thanks Mom and Dad!
On Sunday of that weekend we had to make a trip to the emergency room because Eliza's g-tube fell out by accident. When that happens it's at risk of closing up quite rapidly, which would then possibly require surgery to re-open, so after a couple of failed attempts at reinserting it ourselves, we hurried to the ER. The ER doctor tried a bunch of times and also couldn't get it back in, so he finally called one of the pediatric surgeons to try - and of course she got it reinserted on the first try. Thank goodness she did since Eliza was completely exhausted and in pain from all the repeated attempts. It took her a few days to feel herself again but it's all better now.
The following weekend, we took Eliza to the North Carolina State Fair for the first time. My sister Emily joined us for her first Fair too. We went first thing in the morning to avoid some of the crowds and parking issues and that turned out to be a very good idea. We saw prize-winning flowers, fruits, vegetables, and farm animals, ate too much fried food, and watched the BMX/motorcycle stunt show until Eliza got tired of the noise. All in all, a successful State Fair experience!
Eliza and I joined a "parent and child" swim class. The pool is too cold for her liking (I think she could use a baby wetsuit!) but other than that she's doing very well in the water. She's really good at the kicking part!
Then it was Halloween weekend! We took Eliza to a Halloween party on Saturday (for which Heather made some very cute cake pops), got Eliza's ears pierced Sunday, then stayed home Monday evening to hand out Halloween candy. Despite the cold and rain, there was quite a turnout of trick-or-treaters, but we were prepared and for the first time since moving into our house, we DIDN'T run out of candy halfway into the evening!
And of course in and around all of that, there's been everyday life with Eliza. She finally got over her ear infection and UTI from the beginning of the month pretty well, thank goodness. We've now successfully made it through her first sickness since being out of the hospital. Successful meaning no trips to the ER or hospital stays or too many parental freak outs. Her bottom two teeth are continuing to come in, though she still won't show them off to us - we'll hope to get a picture as soon as she does! She's having some issues with low muscle tone in her eyes so she's having to wear an eye patch on alternate sides for a couple of hours each day to give them both a good workout. She's being a very good sport about that so far!
Plus there's all the other miscellaneous PT, OT, and DT... we're going in to the SICC for her one-year developmental evaluation on Thursday, so more on that subject after that!
Oh, right, it was a busy month! Sorry for the crickets here on the blog!
The month began with our memorial service for Charlotte and Oliver on October 1st, the anniversary of Charlotte's death last year. We held the service in Georgia at the church where their great-grandfather, great-great-grandmother, great-great-aunt, and other family members are buried. We dedicated a memorial marker placed in the family plot. Many of our families were in attendance; it meant so much to us to be reminded of how many people love our children and are touched by their loss. It was a difficult event to plan and attend but we're so glad to have done so. The memorial turned out beautifully and it's so reassuring to have a permanent marker in their honor.
October 8th, we went to Baby Claire's first birthday party - what an event it was, and how wonderful it was to see Claire and her family again!
Next, my parents came up for a long (long!) weekend to help plan and execute a long-awaited major re-landscaping of our front yard. We took out some azaleas and nandinas that hadn't been doing well in the full sun, removed the black plastic sheeting (!) that had been used in place of landscape cloth, uprooted tons of grass and weeds, planted all sorts of new plants and re-mulched the existing beds, added two new garden beds, installed a stepping-stone walkway down to the mailbox, and more!
...Hmm. Although I have plenty of "before" and "during" photos, I seem to have failed to take any finished "after" pictures. I will try to remedy that soon - take my word for it, it's a HUGE improvement. Thanks Mom and Dad!
On Sunday of that weekend we had to make a trip to the emergency room because Eliza's g-tube fell out by accident. When that happens it's at risk of closing up quite rapidly, which would then possibly require surgery to re-open, so after a couple of failed attempts at reinserting it ourselves, we hurried to the ER. The ER doctor tried a bunch of times and also couldn't get it back in, so he finally called one of the pediatric surgeons to try - and of course she got it reinserted on the first try. Thank goodness she did since Eliza was completely exhausted and in pain from all the repeated attempts. It took her a few days to feel herself again but it's all better now.
The following weekend, we took Eliza to the North Carolina State Fair for the first time. My sister Emily joined us for her first Fair too. We went first thing in the morning to avoid some of the crowds and parking issues and that turned out to be a very good idea. We saw prize-winning flowers, fruits, vegetables, and farm animals, ate too much fried food, and watched the BMX/motorcycle stunt show until Eliza got tired of the noise. All in all, a successful State Fair experience!
Eliza and I joined a "parent and child" swim class. The pool is too cold for her liking (I think she could use a baby wetsuit!) but other than that she's doing very well in the water. She's really good at the kicking part!
Then it was Halloween weekend! We took Eliza to a Halloween party on Saturday (for which Heather made some very cute cake pops), got Eliza's ears pierced Sunday, then stayed home Monday evening to hand out Halloween candy. Despite the cold and rain, there was quite a turnout of trick-or-treaters, but we were prepared and for the first time since moving into our house, we DIDN'T run out of candy halfway into the evening!
And of course in and around all of that, there's been everyday life with Eliza. She finally got over her ear infection and UTI from the beginning of the month pretty well, thank goodness. We've now successfully made it through her first sickness since being out of the hospital. Successful meaning no trips to the ER or hospital stays or too many parental freak outs. Her bottom two teeth are continuing to come in, though she still won't show them off to us - we'll hope to get a picture as soon as she does! She's having some issues with low muscle tone in her eyes so she's having to wear an eye patch on alternate sides for a couple of hours each day to give them both a good workout. She's being a very good sport about that so far!
Plus there's all the other miscellaneous PT, OT, and DT... we're going in to the SICC for her one-year developmental evaluation on Thursday, so more on that subject after that!
Sunday, October 2, 2011
An eventful week for Eliza!
This has been a big week for Eliza, with all sorts of events and accomplishments.
First, she rolled onto her tummy unassisted for the first time on Friday. This is a huge event! She's been quite adept at rolling off her tummy for a while now, and in fact that's usually the first thing she does whenever we've put her on her tummy ourselves. She just hasn't been that big of a fan of being on her tummy, but she definitely needs that tummy time to help develop all her muscles and get her ready for crawling. So we're thrilled that she finally has both the motivation and ability to roll herself over - big things ahead for our baby!
Second, she's honest-to-goodness teething! We can feel a bottom tooth just starting to poke out of her gums, so it's official! (We have to clarify that point, because her feeding therapist has for months used "Oh, she must be teething!" as an excuse for everything - fussiness, lack of interest in feeding, increased interest in feeding, increased drooling, etc. - so "she's teething" has become an in-joke for us as a result...)
Third, she's come down sick for the first time since she came home from the hospital. She had a fever up to 103 last weekend, so we took her to the doctor and it looked to be an ear infection. Luckily we started her on amoxicillin because on Monday we found out she also had a urinary tract infection. Her fever returned mid-week and another trip to the pediatrician revealed that her ear infection was not responding to the antibiotics so now she is on cefdinir (omnicef). Hard to tell if it's doing anything to help with the infection itself, but her fever's gone so that seems promising. It is giving her some pretty unpleasant diarrhea though, so hope it does the trick and she can get back off it soon! Poor baby - Ear infection, UTI, teething and diarrhea! Yikes!
Fourth, with all of the above going on, she made the trip down to Georgia with us for her siblings' memorial service (more on that in a separate post). Despite everything she was an absolute angel throughout - playing quietly in her stroller during the service, then being happy and sociable with everyone talking to her and taking turns holding her. We really couldn't wish for a better behaved baby!
First, she rolled onto her tummy unassisted for the first time on Friday. This is a huge event! She's been quite adept at rolling off her tummy for a while now, and in fact that's usually the first thing she does whenever we've put her on her tummy ourselves. She just hasn't been that big of a fan of being on her tummy, but she definitely needs that tummy time to help develop all her muscles and get her ready for crawling. So we're thrilled that she finally has both the motivation and ability to roll herself over - big things ahead for our baby!
Second, she's honest-to-goodness teething! We can feel a bottom tooth just starting to poke out of her gums, so it's official! (We have to clarify that point, because her feeding therapist has for months used "Oh, she must be teething!" as an excuse for everything - fussiness, lack of interest in feeding, increased interest in feeding, increased drooling, etc. - so "she's teething" has become an in-joke for us as a result...)
Third, she's come down sick for the first time since she came home from the hospital. She had a fever up to 103 last weekend, so we took her to the doctor and it looked to be an ear infection. Luckily we started her on amoxicillin because on Monday we found out she also had a urinary tract infection. Her fever returned mid-week and another trip to the pediatrician revealed that her ear infection was not responding to the antibiotics so now she is on cefdinir (omnicef). Hard to tell if it's doing anything to help with the infection itself, but her fever's gone so that seems promising. It is giving her some pretty unpleasant diarrhea though, so hope it does the trick and she can get back off it soon! Poor baby - Ear infection, UTI, teething and diarrhea! Yikes!
Fourth, with all of the above going on, she made the trip down to Georgia with us for her siblings' memorial service (more on that in a separate post). Despite everything she was an absolute angel throughout - playing quietly in her stroller during the service, then being happy and sociable with everyone talking to her and taking turns holding her. We really couldn't wish for a better behaved baby!
Wednesday, September 28, 2011
Memorial Plans
This Saturday, October 1st, will be the one-year anniversary of our daughter Charlotte's death.
Charlotte was three weeks old when she died. It felt and feels like so much longer than 3 weeks. We watched her fighting for her life, having good and strong days separated by stretches of illness and uncertainty. We had the Do Not Resuscitate conversation, otherwise known as the "death talk," twice in regards to Charlotte. (As opposed to once each with Eliza and Oliver.) One week before Charlotte passed away she became extremely ill with a blood infection and a bowel perforation. She was so sick that the doctors were not willing to perform the same surgery they had on her sister a week before. But despite what the attending doctor that week predicted, Charlotte got a lot better. She came off all of the pressor medication she was on and everything was looking up. They performed the ostomy surgery and she made it through ok. Two days later everything was much, much worse. We spent about 36 hours barely leaving Charlotte's side watching her die. We kept hoping since she had pulled through before, she could do it again. But she didn't. She was just so tired and so sick. We got to hold her for the first and last time that night, to say goodbye.
We'll be gathering on Saturday with some of our immediate family members to hold a memorial service for Charlotte and Oliver and dedicate a stone marker in their memory. It'll be a tough day but a worthwhile one. Thoughts and prayers (especially around 1pm if you can spare a moment) would really mean a lot to us - like sending one big hug our babies' way.
Charlotte was three weeks old when she died. It felt and feels like so much longer than 3 weeks. We watched her fighting for her life, having good and strong days separated by stretches of illness and uncertainty. We had the Do Not Resuscitate conversation, otherwise known as the "death talk," twice in regards to Charlotte. (As opposed to once each with Eliza and Oliver.) One week before Charlotte passed away she became extremely ill with a blood infection and a bowel perforation. She was so sick that the doctors were not willing to perform the same surgery they had on her sister a week before. But despite what the attending doctor that week predicted, Charlotte got a lot better. She came off all of the pressor medication she was on and everything was looking up. They performed the ostomy surgery and she made it through ok. Two days later everything was much, much worse. We spent about 36 hours barely leaving Charlotte's side watching her die. We kept hoping since she had pulled through before, she could do it again. But she didn't. She was just so tired and so sick. We got to hold her for the first and last time that night, to say goodbye.
We'll be gathering on Saturday with some of our immediate family members to hold a memorial service for Charlotte and Oliver and dedicate a stone marker in their memory. It'll be a tough day but a worthwhile one. Thoughts and prayers (especially around 1pm if you can spare a moment) would really mean a lot to us - like sending one big hug our babies' way.
Wednesday, September 14, 2011
1 Year Check-up
Stats:
Weight: 15 lbs 7.5 ounces
Height: 26.25 inches
Head Circumference: 16.75 inches
The appointment went pretty well and overall Eliza's pediatrician was happy with her development. Her weight gain has been good over the last 4 weeks, averaging 15 grams a day. We were all a little surprised considering she's doing quite a bit of vomiting still. Fortunately with the addition of more medication (Zantac) over the last couple weeks the pain with her reflux has definitely decreased. She's back to being a lot more cheerful during the day. So right now she is on Reglan, Prilosec, and Zantac for her reflux. Our pediatrician is also in discussion with Eliza's doctors at SICC to update her feeding plan. Fortunately we should be getting a new portable feeding pump to replace the one we have now. This should definitely help with her feedings during the day and free up our hands to entertain her while she's hooked up to the pump!
Development-wise she has made progress and steps forward. Her core strength is getting better and her "preemie-arching" is starting to decrease. This means shes a little better at sitting in our laps without being too unstable. Still a ways to go for independent sitting but we have physical therapy 2x a week now to help with making progress.
Fine motor skill wise Eliza has mastered grabbing her paci, specifically her wubba nub, and getting it into her mouth! It's really great that she has figured this out since she's not able to keep it in her mouth just by sucking. Paci-use is good for Eliza to keep exercising her mouth muscles and forming positive associations with putting something in her mouth.
Relatedly, we are also SLOWLY making progress on spoon feeding. She's opening her mouth for the spoon now, and her lips are closing more around the spoon... we just have to work on the food going down her throat instead of back out of her mouth :)
We've got a running joke that "Eliza must be teething" - her feeding therapist has been making that suggestion every week for the last four months to explain anything from drooling to fussiness to lack of interest in eating, and yet still no teeth! But now we're starting to think she might actually be doing so - the drool is definitely increased, and I gave her one of the chilled teething rings to suck on today and she really liked it... so who knows, maybe it's actually happening this time.
Other medical news: The kidney ultrasound Eliza had today looked completely normal. No more hydronephrosis of the kidneys! And no more follow up ultrasounds! Though I think Eliza will be a little disappointed. She seemed to really enjoy the process today. Dim lights, comfy bed, cartoons playing, and warm jelly on her belly. They know how to make a baby happy. ;-)
Weight: 15 lbs 7.5 ounces
Height: 26.25 inches
Head Circumference: 16.75 inches
The appointment went pretty well and overall Eliza's pediatrician was happy with her development. Her weight gain has been good over the last 4 weeks, averaging 15 grams a day. We were all a little surprised considering she's doing quite a bit of vomiting still. Fortunately with the addition of more medication (Zantac) over the last couple weeks the pain with her reflux has definitely decreased. She's back to being a lot more cheerful during the day. So right now she is on Reglan, Prilosec, and Zantac for her reflux. Our pediatrician is also in discussion with Eliza's doctors at SICC to update her feeding plan. Fortunately we should be getting a new portable feeding pump to replace the one we have now. This should definitely help with her feedings during the day and free up our hands to entertain her while she's hooked up to the pump!
Development-wise she has made progress and steps forward. Her core strength is getting better and her "preemie-arching" is starting to decrease. This means shes a little better at sitting in our laps without being too unstable. Still a ways to go for independent sitting but we have physical therapy 2x a week now to help with making progress.
Fine motor skill wise Eliza has mastered grabbing her paci, specifically her wubba nub, and getting it into her mouth! It's really great that she has figured this out since she's not able to keep it in her mouth just by sucking. Paci-use is good for Eliza to keep exercising her mouth muscles and forming positive associations with putting something in her mouth.
Relatedly, we are also SLOWLY making progress on spoon feeding. She's opening her mouth for the spoon now, and her lips are closing more around the spoon... we just have to work on the food going down her throat instead of back out of her mouth :)
We've got a running joke that "Eliza must be teething" - her feeding therapist has been making that suggestion every week for the last four months to explain anything from drooling to fussiness to lack of interest in eating, and yet still no teeth! But now we're starting to think she might actually be doing so - the drool is definitely increased, and I gave her one of the chilled teething rings to suck on today and she really liked it... so who knows, maybe it's actually happening this time.
Other medical news: The kidney ultrasound Eliza had today looked completely normal. No more hydronephrosis of the kidneys! And no more follow up ultrasounds! Though I think Eliza will be a little disappointed. She seemed to really enjoy the process today. Dim lights, comfy bed, cartoons playing, and warm jelly on her belly. They know how to make a baby happy. ;-)
Birthday Bash
Eliza's first birthday party was this past Saturday. We decided to have it at our house so that Eliza would be in a comfortable environment, but since our house and yard aren't that big it left us busting at the seams with people -- and it was great! We felt that this was quite a momentous occasion for our baby girl and wanted to celebrate with family and friends just how far she (and we as a family) have come in a year. From 1 lb 4 oz, 11 inches, micro-preemie knocking on death's door, to a 15 ½ lb, 26 inch, thriving happy baby that she is now. “How sweet it is!” That's exactly the sentiment we ran with for this party!
Eliza's sweets shop - candy, cupcakes, and snacks, oh my!
I set out some of Eliza's first baby clothes as a reminder of just how far she'd come. We also got a doll made by Wee Bundles to the exact size and weight Eliza was at birth. It's easy to forget just how small she was. She's come a LONG way!
We were fortunate to be able to have a professional photographer present to supplement the pictures we always forget to take! While we won't have the photos for a couple weeks yet, she's posted a preview on her blog and I have to say they look AMAZING! I can't wait to see the full set! Of course plenty of the guests brought cameras too - Eliza got to have her very own paparazzi experience! (If you got some good ones, we'd love to have copies...!)
I set out some of Eliza's first baby clothes as a reminder of just how far she'd come. We also got a doll made by Wee Bundles to the exact size and weight Eliza was at birth. It's easy to forget just how small she was. She's come a LONG way!
We were fortunate to be able to have a professional photographer present to supplement the pictures we always forget to take! While we won't have the photos for a couple weeks yet, she's posted a preview on her blog and I have to say they look AMAZING! I can't wait to see the full set! Of course plenty of the guests brought cameras too - Eliza got to have her very own paparazzi experience! (If you got some good ones, we'd love to have copies...!)
And to give credit where credit is due:
A great big HUGE thanks to my mom for all her hard work on this party. She really did most of the work and it would have never turned out as well as it did without her!
Husband - way to rock the 1 year video! Thanks for your perseverance through the technology debacle:)
And a shout out to my friend Jean. She created the cute cupcake toppers and water bottle labels just for Eliza's party and also printed, cut-out, and shipped them to me! Thanks Jean!!
And to family who drove and flew up from GA to make the day special -- you guys are great!
 |
| "Finally! Party is over and I can get out of those clothes!" |
Monday, September 12, 2011
Eliza's First Year
Despite my last post, I was finally able to finish the video retrospective of Eliza's first year. We played it at Eliza's birthday party (expect a post on that big event soon!) and it went over really well. I know I'm very happy with how the video turned out. My only real complaint is that it's very quiet - some of the clips we recorded when Eliza was in the hospital are very quiet, and since Windows Movie Maker doesn't seem to offer any way to increase the volume of a clip, I had to bring everything else down to the same volume level to match. Thus, you'll probably want to turn up your volume (and click the icon to view it full size/full screen!) when you watch it.
Enjoy!
Enjoy!
Eliza's First Year from Heather Matthews on Vimeo.
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