Monday, December 5, 2011

Sunday, December 4, 2011

Then and now

Just wanted to share a couple of "then and now" pictures showing how Eliza's grown over the last year.

First, here's Eliza's silhouette from when she first came home compared to at her birthday:

She hardly even looks like the same baby, does she? She looks so much less like a "baby" and more like a "kid" now too. We have both silhouettes side-by-side on the wall at our house, and I plan to add a new one every year.


And second, here's Eliza with Santa last year and this year:


Yes, that's her underneath the blanket Heather's holding (she'd just had her laser eye surgery which is why she's covered up). Still in the hospital, still hooked up to all sorts of wires and tubes running off the left edge of the picture, and still so tiny!




How far she's come - sitting up with almost no support, having close to a full head of hair, weighing almost 20 pounds, and having SIX teeth now (not pictured - she's shy about showing them off still)! What a kid!

Tuesday, November 15, 2011

Survivor

In honor of Prematurity Awareness Month

I've always had a problem with referring to Eliza as a "miracle baby!" but really didn't put much time into thinking about it (most brain power over the last year has been reserved for more important things, like not going insane!) It just rubbed me the wrong way somehow. Lately I've been giving it a little more thought and I think I have a better understanding of my response.The spark of life, a baby born at 40 weeks healthy, a person falling from a building and landing unscathed - those I would call miracles. But a baby born at barely more than half her intended gestation, sole survivor of her siblings, staring down and fighting death every day for months? No, I would call that something else. A survivor.  I think Eliza deserves the credit for being alive and for doing as well as she is now. (as does her very hard-working medical team.) She is the toughest person I know. She fights incredibly hard for every single hard-won step of progress she makes. She is the only person I know that has had 6 surgeries, spent 162 days in the hospital before being discharged with a 10-page summary containing 37 separate diagnoses, did it all starting at only 1lb 4oz and has come out the other side thriving. Eliza and babies like her are tough, resilient, survivors.

I am so proud to have her as my daughter.




(I just thought of another miracle..how on earth Glenn and I managed to create such an amazingly strong person!)

Monday, November 14, 2011

"A Child in Time"

Today's reading assignment for Prematurity Awareness Month is a New Yorker article, "A Child in Time: New frontiers in treating premature babies". It covers a lot of ground, but the gist of it is all about the challenges, uncertainties, and medical progress surrounding premature birth, the NICU, and the eventual prognosis for such children.

It's difficult for me to read articles like this - just as with the Micro-Preemie Power comic we linked earlier this month, there's enough commonality between our story and the stories of the preemies here that it gives me something like PTSD flashbacks to read it. Nonetheless, it's worth reading.

Some excerpts that spoke to me in particular:

How far the NICU has come in fifty years:

On August 7, 1963, when a second son was born to President and Mrs. Kennedy (...) delivered five and a half weeks early, by Cesarean section, and weighed four pounds ten and a half ounces. (...) Baby Patrick died, thirty-nine hours and twelve minutes after his birth. The Times later reported, “The attending physicians certified to a diagnosis of prematurity and hyaline membrane disease . . . a lung disorder that takes the lives of about half of the 50,000 babies who contract it every year.” (...) [Now, 50 years later,] “Survival at thirty-two weeks’ gestational age is nearly a hundred per cent.”


About the uncertainties of a "Web-based algorithmic calculator, which allows a doctor to enter the premature infant’s characteristics and find its chances of death and disability":

[A 24-week triplet boy's] chance of death was fifty-three per cent; of death or profound neurodevelopmental impairment seventy-one per cent; of death or moderate to severe impairment eighty-five per cent. “Every baby is unique, and every family is unique,” Martin said. (...) Although the algorithm was designed to provide estimates, often it actually reinforces the uncertainty of outcomes. (...) [A picture of this boy today] shows a smiling first grader, now six and a half years old. (...) One of the drawbacks of the algorithm is that the prediction of cognitive and other neurodevelopmental abnormalities relies on testing at eighteen months. (...) Early testing can frighten parents by highlighting developmental limitations that later resolve. On the other hand, it can give false reassurance when a baby tests well at eighteen months and later develops A.D.H.D. or delayed language skills, which are the two most common late-onset effects of prematurity.


On the loss of a 24-week preemie:

“I’m not really into who has the worst story, because there is always a worse story,” she told me. “But I’m so grateful for those days we had. I didn’t at the time realize how important that month was. But now I know. You don’t realize when you are pregnant how fast you start planning. You don’t realize all the dreams that you have for the child. Those days do mean something."


Go. Read the whole article. You'll be glad you did.

Sunday, November 13, 2011

Sitting Chatterbox

Eliza's been a real chatterbox this weekend. Who knows if it's going to last or if it's just a temporary phase, but it's been great to hear her babbling happily away. Lots of "gu" and "eth" and "ef" and "ba" syllables. At one point she and Heather were having kind of a back and forth "conversation" with "ba" and "bo" sounds, which was really cute and pretty funny. Dumb me for not getting any of it on video - hopefully I'll manage it next time.

The other thing that we've really noticed this weekend is how much better she's getting at sitting. She's still a long way from sitting up by herself, and all things considered still prefers to lie on her back, but when she's set upright and given something to hold her interest, she can stay up unsupported for 30+ seconds before tipping over, and can even wobble from side to side a bit and still stay up. Serious progress!

Friday, November 11, 2011

Such a cutie!


Just thought I'd share. Its one of our favorites from Eliza's birthday party! 

Eliza's check up at SICC

So a couple posts back we mentioned that Eliza was going in for her check up at the Special Infant Care Clinic. This was also her first developmental testing with a developmental psychologist. (I should get a nickle for every time we say "developement" or "developmental" around here.) Per usual, it was an all-day event and Eliza was completely toasted by the time we left. BUT she really did great while we were there.

So, the results were not far from what we expected. For extremely premature babies delays are always expected. Eliza really did an awesome job of demonstrating everything  she's been working on lately so I really feel that the results were representative. The 3 main areas the psychologist looks at are motor, cognitive, and language. Eliza's motor skills are at a 4 month level and cognitive and language are at a 7 month level. They compare these numbers to her adjusted age (10 months) verses her actual age (14 months).

Motor skills are a huge struggle for Eliza. She has hypotonia (or low muscle tone) and it takes SO much longer to learn a new motor skill than the average baby. In addition to that she is dominated by her extensor muscles which are the muscles on the back of her body. This is why her arms are usually extended backwards. We call those her "preemie wings" Its also why anytime she is tired or unstable she arches, and why lying on her back is the most comfortable for her (verses being held or sitting in someone's lap). As you can imagine both of these are big hurdles for learning to sit. She is not able to sit on her own yet, but we are working very hard at this and she is making gradual progress. She's also poor at tummy time. She is able to lift her head but only infrequently puts any weight on her arms. Since rolling over a couple times around 2 months ago, she has not repeated it. Also, when you try to help her roll she completely locks her body down to prevent it.

The most interesting news of the eval was about her cognitive skills. Apparently in babies as delayed in motor skills as Eliza they usually see cognitive skills equally delayed. At this age motor skills can hold back progress in cognitive skills as well. The biggest reason for this is just how different a baby's interaction with the world changes once they are able to sit. The psychologist said it's typical to see babies that are still just lying down to only be able to bat at toys. But Eliza is holding a toy in each hand, passing a toy from one hand to the other, starting to imitate play with toys, interacting with small objects, longer attention span...more like a baby that is sitting. So that was really great to hear and very encouraging!

After the eval we met with her doctors and there was a lot of talk about her feeding plan. And by feeding plan I mean what and how much is being pumped through the g-tube. There is always lots of talking about this. Really continuing to grow isn't too much of a problem since she has the g-tube. As long as we can keep the reflux under control with her meds (that we are slowly weaning as well) to minimize vomiting she doesn't have issues with keeping on her growth curve. (Which for 10 months adjusted was about 25% for length and 10% for weight).

I won't talk about Eliza's actual eating right now. I just get tired of talking about it. I'll let you know if we make any consistent progress on that front.  I am so thankful for her new feeding pump though!  Any other g-tube mommies out there reading this... get a portable pump! We have a Kangaroo Joey and it works so much better than trying to either gravity feed with a syringe or the regular Kangaroo on the IV pole. Feedings are soooo much less frustrating and messy!

She also had her hearing test and all is good on that front.The girl has no problems with hearing! OK long enough post now! Goodbye.

Wednesday, November 9, 2011

World Prematurity Day and Prematurity Awareness Month

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!

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!

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!

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.

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. ;-)

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...!)


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!

Eliza's First Year from Heather Matthews on Vimeo.

Sunday, September 4, 2011

Oh September

I haven't really done much "this time last year" posting, though lately it's been on my mind, a LOT. Pretty expected since Eliza's birthday is in 4 days and my pregnancy leading up to the babies birth was, in the kindest of descriptions, tumultuous. We were pretty quiet on the blog this time last year (similar to now!) using all of our energy to just hold on to the pregnancy for just a few more days or weeks. Glenn did take time to email out to family and friends some status updates while I was laid up in the hospital bed vacillating between magnesium drip torture and lucidity (although watching nonstop reruns of "A Baby Story" and "I didn't know I was Pregnant" with my mom may not be considered lucid). I read through the emails the other day and one thing that really stood out to me was just how optimistic we were. I miss that about us. I think our optimism has been battered to oblivion.

The email updates started after I had been admitted to the hospital for the last time. I was admitted after one of my routine 3 hour OB checkups. It was a Friday. I had been having some mild cramping all morning and let the doctors know at the beginning of my appointments but for some reason taking a peek at my cervix was saved until the end of my 1.5 hour ultrasound. That's when the doctor saw that I had started dilating past my cerclage (stitch keeping my cervix closed) and the membranes were beginning to push through. Thankfully my mom and granny were both with me for the news and to drive me quickly to the ER. I will always remember all of us standing in the ultrasound room waiting for the Dr. to give us the go ahead to rush out. I think I said some unpleasant words.

Somewhere between that point and getting admitted into the labor & delivery I started going into labor. The next several hours were a blur. A lot people asking me if I was in pain and me trying to tell them that that wasn't the important part.. I just wanted them to stop the babies from coming!  Twenty two weeks was far too early for babies to be born. Eventually they did stop it. I saw a lot of doctors over the next couple days. At first they were very somber about the reality of giving birth to babies at 22 weeks. Really no chance, but make it to 23 weeks? The discussion would change.

I made it to exactly 23 weeks and Eliza's water broke. That's where Glenn's emails begin:

8/30/10
Hi all,

Mixed status to report today. 

Heather woke up at 4:30 this morning to find that baby A's water had broken. Surprisingly to me, this doesn't necessarily mean that baby A is doomed or that delivery has to happen now - apparently if Heather doesn't go into labor irreversibly, baby A can hang out in there and keep growing for a while yet, but the lack of the protective amniotic sac puts Heather and baby at much greater risk of uterine infection, which *would* require that Heather deliver immediately. Therefore, the doctors immediately started Heather on a 7-day course of antibiotics as a preventative measure. They've also started her on a set of steroid injections which are supposed to help the babies' lungs develop a bit more quickly in case we do have to deliver soon.

Heather did start having major contractions and cramping (the worst she's had yet) after the water broke, so we've been spending most of the day trying to get that settled back down, and at the moment (4:30 PM) the combination of IV magnesium sulfate and high-dose ibuprofen seem to have finally done the trick. "Mag" is an unpleasant medication to be on, as side effects include lengthy hot flashes, grogginess, pain at the injection site, and nausea, and Heather can't eat or drink while she's on it, but it seems to be the drug of choice for stopping/preventing pre-term labor. Ibuprofen, interestingly enough, is even more effective, but it can only be used for short periods of time (2 days or so) without introducing a whole nother set of risks to the babies.

Today marks 23 weeks, so we're now officially far enough along for the babies to have a chance of survival if they deliver today, but the numbers are still pretty grim (about 40% survival rate, IIRC), so we're obviously hoping for many more days of pregnancy yet. We've had meetings yesterday and today with staff from the NICU (neonatal intensive care unit) to make sure we understand the statistics and the kinds/degrees of intervention that they may perform to keep the babies alive if they deliver soon. I also went on a tour of the NICU last night in order to get some idea what to expect, since even if we make it many more weeks it's virtually certain that our babies will spend at least some time in there. Seems like a very well-run place - lots of teeny tiny infants hooked up to various machines, but quiet and peaceful and staffed with lots of doctors and nurses who obviously care a lot. We feel really fortunate to be at Duke, given the situation we're in, as Duke's NICU has some of the best outcomes in the country.

That's all for now - I'll do my best to keep y'all in the loop as things continue to develop.

Glenn
____________________________________________________________
8/31/10
Hi all,

Today (day 5 at the hospital)  has been a quiet one, and at this point no news is definitely good news! Heather got her second steroid shot this morning, and they've taken her off the magnesium sulfate for now, which has her feeling MUCH better (especially since being off "mag" means she can eat real food again), though I think she may have missed its grogginess/drowsiness side effects just a bit when she was trying to nap between checkups this afternoon.  Very few contractions today, and Heather's been feeling well enough to let her mom wash her hair and paint her toenails, which I think also helped. :-) She's still on the ibuprofen for a bit longer to keep the contractions down, but if the contractions start back up again in the future, she'll be going back on the magnesium again. Heather has also been getting regular ultrasounds to check the babies' heart rates, and so far they're continuing to all look strong and healthy. I think I've mentioned this before to most of you, but in case I haven't, Heather will definitely be in the hospital for the rest of the pregnancy. Here's hoping that's a long time!

Glenn

___________________________________________________________
9/1/10
Hi all,

The contractions started back up a little before breakfast this morning, so Heather was put back on the magnesium sulfate again. This settled things back down again pretty quickly and kept them so throughout the day, but with the usual unpleasant side effects (drowsiness/exhaustion, overheating, and a diet of clear liquids only - jello, chicken broth, and popsicles for every meal, ugh!). Heather's dad made the drive up from Georgia today to join her mom here and stay with us until the weekend, which we really appreciate. Ultrasounds are continuing to look good - even though baby A doesn't have much fluid to protect her at this point, all three babies still have good strong heartbeats and are quite the little squirmers. Heather is hanging in there really well through all the ups and downs so far (on magnesium, off magnesium; on solid foods, on clear liquids only; no contractions, cramps only, contractions and cramps; etc.) but it's naturally pretty exhausting for her to handle it all. She was taken back off the magnesium around 8 tonight, and although some cramps have returned the contractions seem to be staying away for now - hopefully she'll be able to get a good night's sleep tonight!

Glenn
______________________________________________________
9/2/10
Hi all,

Today was a great day! A good night's sleep last night, and today, fewer cramps, very few contractions, and no magnesium sulfate! Heather has been doing so well today that they've been gradually unhooking her from the various sensors, monitors, and IV drips - as I write this the only thing she's still connected to is an IV for fluids, since that is really helping her stay hydrated. Heather had a detailed ultrasound today and the babies are all well. I went into the office today for some meetings, leaving Heather's mom to look after Heather during the day. Having her here all week has been a tremendous benefit to Heather's peace of mind, and she has taken great care of us both and kept an eye on the house while we've been away.

Thank you all for all of your kind words, prayers, offers of support, and thoughts. It has really meant a lot to us as we've been going through all of this!

Glenn
_________________________________________________________
9/6/10
Hi all,

Happy (non-)Labor Day! This weekend has been a fairly quiet one, for which we are very thankful, although not without the usual various ups, downs, and scares from day to day. As long as there keep being more ups than downs, and we keep coming out on the other side still pregnant and healthy, we can't really ask for anything more!

Heather's mother and father went home on Saturday to attend to some things at home. Heather's sister and brother-in-law stayed here from Friday night through this morning, and Heather's mom came back this evening. The companionship of her family has been much appreciated throughout all that has been happening.

Today marks 24 weeks, which is another major milestone for us. Statistically speaking, it's the point at which a baby has a better than 50% chance of long-term survival if born today (although given that we're at Duke, hopefully the numbers are a bit better for us...). It's still a scary time, but the numbers just keep getting better every day.

Thanks again for all of your thoughts, prayers, and support,

Glenn 

____________________________________________________
9/8/10
THE BABIES HAVE ARRIVED! 

At around 9:55 AM today, September 8 2010, Heather and I became the proud parents of:
Eliza (1 lb, 4 oz)
Charlotte (1 lb, 1 oz)
Oliver (1 lb, 3 oz)

Around midnight last night, the cramps and contractions started up again in force. The doctors started Heather on magnesium sulfate again, and by around 3:30 AM they had settled back down enough for us to get a couple of hours of sleep. Then, around 5:30, they started back up again. After a couple of hours with no relief and no response to magnesium and terbutaline, the doctors decided that at this point, the risks of continuing to try to stop the labor (especially since they thought it likely the labor might be caused by a developing infection) outweighed the risks of delivering the babies (since we were now past the magic 24 week milestone), and so they scheduled Heather for a C-section this morning. Heather went into the operating room around 9 for her epidural, I was allowed to join her at 9:30, the babies were delivered in rapid succession at about 9:53, 9:54, and 9:55 (and then whisked off to the NICU by the neonatologists), and we were in the surgical recovery room by 10:30. 

After Heather had finished recovering from her epidural, we helped her into a wheelchair and took a trip to the NICU to visit the babies. They're really tiny, and as 24-week preemies, there's a lot that can go wrong for them, but they seem to be stable at the moment and being well looked after by the NICU staff. At the moment, they're each in individual isolettes (incubators), hooked up to ventilators and heart monitors, and swaddled in little blankets. Their eyelids haven't opened yet, and probably won't open for a couple of weeks. They'll undoubtedly be in the NICU for many weeks, but we're hopeful that they will grow and thrive in there and come home to us in due time. 

Today has been a lot for us to process, and it still feels very surreal and unreal in many ways, and there are still many uncertain times ahead, but right now we're just happy that the babies are alive and relatively healthy, and we're looking forward to getting to know them better in the days to come.

Thank you all for your care and support!

Glenn

P.S. By a happy coincidence, today is also Heather's mother's birthday - so she and her first grandkids share the same birthday. Isn't that wonderful?


Whew, it's hard to even recognize ourselves in these emails. 'Ignorance is bliss' I suppose. I was planning to go through and add my comments and perspectives on things from what I remember but I honestly just don't have the capacity right now.

Monday, August 29, 2011

Stupendously stupid slideshow software

In preparation for Eliza's upcoming birthday, I've been working on assembling a video slide show of the past year of her life. You've surely seen the type - photos and video clips, with captions and smooth transitions between images, all set to music. Pretty commonplace and straightforward to create, right? WRONG. This project has been unbelievably troublesome and frustrating so far, and there's probably more to come since I'm not done with it yet.

My first attempt was to create the slide show using Picasa. All of our photos and video from the last year are already in Picasa, and it offers slide show creation as a feature, so why not give it a try?

We have video clips from four different sources:
  • Our video camera produces HD video clips in .MOV format.

  • Hannah's video camera produces HD video clips in .MOV format.

  • My iPod Touch produces video clips in .MOV format.

  • Heather's iPod Touch produces video clips in .MOV format.

Guess what format Picasa doesn't handle properly in the slide shows it generates?

That's right - while the .MOV files play just fine from within Picasa, when splicing them into a slideshow, the video file becomes just a single still frame in the slide show. Naturally Picasa doesn't give you any warning or error message about this, either - it successfully creates a new video file of the entire slide show; only when playing through this video can you see that that 30 second clip of Eliza taking her first bath at home has been replaced with a single blurry frame of the back of Heather's head.

Seriously? It's 2011, folks - I thought the whole incompatible audio/video file formats situation had long since been solved. I remember dealing with this kind of problem back in 1998, for goodness sake! The .mov format has been around a LONG time - this is like having a photo program that doesn't know how to handle .jpeg files or something.

It gets better - searching the Picasa user forums, this has been an issue for at least two years. I don't know if you've ever noticed this, but Google doesn't provide actual tech support, nor does it provide ANY way for you to actually get in touch with its employees. If you have a problem with a Google product, your options are:

1) Read whatever documentation pages Google has provided just in case it was user error or something. (It wasn't)

2) Check the Google user forums to see if others have seen the same problem (they have, for several years) and if anyone has managed to come up with a workaround (nothing definitive, but various solutions). Again, these are USER forums - all of the questions and answers are coming from people like you. No one from Google who actually knows anything actually reads these forums or replies to them. For all I can tell, Google might have no idea this bug even exists (how would you bring it to their attention, after all, since there's no way to contact them?).

So I found a couple of possible workaround ideas on the user forums. First - "Just rename them from .mov to .mp4 to fool Picasa, it handles .mp4 much better" - no luck. Second - "Install this megapack of third party video codecs from a dubious website" - hmm, well I think Heather's PC's antivirus software is up to date, so what the hey, let's try it - interesting, when I start creating the slideshow, about 40 little icons get added to the Windows side bar, but they go away when it's finished - hey look, the slide show now includes video clips - but not the associated audio. Oh well, it's not like it would be nice to HEAR Eliza giggling at her Pops or anything...

At the same time, I was also getting frustrated with other limitations in Picasa's slide show creation - most notably, the fact that all of the picture captions were rendered in white text, regardless of the background color. White text on a pale grey background doesn't exactly make for readability.

So surely this is just a matter of Picasa's slide show functionality being an afterthought - Picasa is after all primarily an application for image importing, retouching, and organizing - and some other program would be much better? I did some searching online and found some sites that spoke highly of the Windows Movie Maker program, which is free with Windows. Surely a "Movie Maker" program would have all of the necessary functionality to make home movies with, right?

So, not having learned my lesson, viz., that free applications are often worth what you paid for them, I began trying to recreate the slide show in Windows Movie Maker. First problem? You guessed it - Windows Movie Maker doesn't natively support .MOV either. @#^#$^%#%!!%#^%$^#$$$$!!!! How can it be that three different models of consumer video camera output this format, yet neither of these apps supports it?

Time to do some more web searching. Oh look - here's a free program, with lots of glowing reviews, that can convert between many different video formats, including from .MOV to the .avi or .wmv formats that Movie Maker prefers. So I download it and feed the video clips into it. Ooh, nice GUI, very polished looking. It runs for 15 minutes or so and produces a batch of .avi files, just what I needed! Only not. I open the files and the video within is complete garbage, just a mosaic of randomly colored squares and shapes. Apparently this app doesn't like my video files. Why did it run to completion producing garbage instead of giving me a simple warning message that the format wasn't supported?

Time to do some more web searching. All of these video clips use the H.264 codec, which is not specific to .MOV versus .avi - .mov and .avi are just two different kinds of containers for the actual video data within. Maybe there's some way I can use that? I stumble across a site that provides a simple plugin to allow programs that can read .avi to read the video data out .mov files too. I install it and it actually works - Movie Maker can see and play my videos! The one caveat (which nothing on the site warned about) is that videos played through this plugin have a little badge (sort of like a TV station identification logo) superimposed on them. Ah well, at least it's pretty unobtrusive...

Okay, I've got all of the pictures and all of the video clips loaded into Movie Maker. Let's try constructing a test video to make sure it's all working - I don't want any more surprises with clips turning into stills or disappearing audio! I tell the program to publish the video. It starts a progress bar, showing that it'll take about an hour to render. I leave it alone, checking back periodically on its progress. It finally finishes - but what's this message?

Windows Movie Maker cannot publish the movie to the specified location. Verify the original source files used in your movie is still available, that the publishing location is still available, that there is enough free disk space available, and then try again.


What.

Time to do more web searching. Apparently this error, too, is a frequently encountered issue, and naturally, no one seems quite sure what the trigger or triggers are. Possibilities include not enough RAM (Heather's computer has 4 GB, which should be enough for a 20-minute video!), not enough disk space (unlikely, there's 60+ GB free), incompatible codecs or file types (hmm, perhaps?), or perhaps just that the project is "too complicated" for Movie Maker to handle (maybe also...). After some further investigation, it appears that the latter is to blame. By splitting the project in half, each half is able to render successfully. Supposedly it will then be simple to just splice the two halves back together to create the final video... I haven't tried yet, but I'm trying to be optimistic that it will really be that simple.

If you're still reading this, my apologies. I just had to get this off my chest. I do really like how the video is coming along - it won't be a professional production, and there's always going to be room for improvement, but I really do think the end result will be fun to watch and will be a good summation of the high points of the last year. Hopefully it'll be done soon!

Sunday, August 28, 2011

Time for some more pictures

Fortunately we didnt see much of Irene this weekend. Quite breezy and just a few drops of rain. Eliza didn't really seem to care about her first hurricane either. We enjoyed the cooler weather in the wake of it though! 

We are really over due for some blog posting around here since there has been a lot going on, but then lots-going-on leaves little time for posting. :) I do want to take a few mins to share a few recent-ish pictures. 
Eliza striking her philosophical pose:



Pasha wondering what all the fun is about:


Daddy gives good kisses!


Cuteness!

I love these pictures of her! Such pretty eyes!


Oh yeah gotta love some baby drool! 


You can tell what time of day it is by what Eliza is wearing lately. Naked=End of the day. By afternoon I've given up on changing spit-up-on clothing and opted for wiping at naked skin instead!

Completely shocked when I saw these pictures. These are the first ones that I realized how long she is getting,wow! She really is growing up even if some days/weeks it seems like shes staying in exactly the same place. One year old in less than 2 weeks...



Classic Eliza pose. Tongue hanging out, eyebrows raised. "Whats happening dudes?"

Friday, August 5, 2011

Sleepy time

Our big thing the last couple of weeks with Eliza has been sleep. Specifically, of course, Eliza's sleep.

Naps

As Heather has mentioned previously, Eliza still just plain isn't a very good napper. She has a very strong tendency to wake up after half an hour, no matter how exhausted she might be, and it's a real challenge to get her back to sleep afterward even if she's still clearly tired when she wakes up. She also is not at all able to start or continue a nap in her crib - the only way to get her to nap is to swaddle her, rock her to sleep in her dark room, and then continue to hold her until she wakes up. This was something we just accepted, and mostly embraced while she was younger (especially given that being a preemie tends to lead to more difficulties with sleep - hello NICUitis!) but now that she's getting to be a big girl it's time to start working on this - fewer, longer naps; more time awake between naps; and being able to nap in her crib. The ultimate goal is really just quality sleep that we don't feel she is getting now. Wish us strength - we're gonna need it!

“Why would I want to take a nap? There's so much going on to see and interact with!”

Nighttime sleep

Since we started using the feeding pump for continuous feeds overnight (from about 9 PM to about 5 AM), I don't have to get up at 3 AM to feed her any more. That's great! However, it doesn't always translate into all of us getting to sleep through the night. While Eliza still usually sleeps very soundly once she is asleep, there are three problems:

1) She's having a lot harder time falling asleep at bedtime most nights than she used to. Time was she'd always be passed out completely by the end of her dinnertime feed and it would simply be a matter of laying her in the crib and turning out the light afterward. She still often falls asleep during the feed, but now she tends to wake up when we lay her down in the crib, and it can take an hour or much more to get her back to sleep after that.

2) The feeding pump, oh the feeding pump. It seems to be very sensitive about the consistency of the formula passing through the pump - at seemingly random times, the pump will start beeping and display an alarm about "check for clogs in the line". The beeping won't stop until you go in there and push a button to continue pumping, and there's no way to adjust the sensitivity or disable this alarm. We need to have the monitor volume turned up next to the bed all night so that I can hear the alarm and run to turn it off before the beeping disturbs Eliza (and Heather - night time is my responsibility and she needs her rest after handling baby all day while I'm at work!). Some nights the pump alarm has gone off at fifteen-minute intervals for several hours until we finally got too frustrated with it and simply turned the pump off for the rest of the night. Hoping that the pump was simply defective, we arranged to exchange it with a replacement model, which has helped a little but not completely gotten rid of the alarms. I've also been making an extra effort to ensure that the formula is as thoroughly mixed and blended as possible before feeding it into the pump, and that seems to help somewhat - here's hoping that continues to improve!

3) Eliza is now waking up between 5 and 5:30 AM every morning. She's still sleepy when she wakes up, and can often be soothed back to sleep for an hour or and hour and a half more if we pick her up and continue to hold her. We're not sure why she's waking up (and staying awake!) given that she is still sleepy at that point and that she's still not getting as much total sleep each day as she really ought. Getting her to go back to sleep at that point is essential because if she stays awake from 5 onwards, she can't make it to even 7am (her next scheduled feed), much less 8 AM (when her physical therapist comes on Tuesdays and Thursdays) without being utterly exhausted, and from the books we've been reading she really should be up till at least 8:30 before her next morning nap.

One thing that's been essential since Eliza first came home, and is even more essential as we work on improving her sleeping, is our video baby monitor. It's so helpful to be able to not only hear whether she's fussing or crying, but also to SEE if she's tossing and turning in her sleep, playing quietly instead of napping, or (as has been unfortunately common lately) vomiting her last meal all over herself and her bed. We're not too happy with this particular model (we had to return the first one for a replacement after two months of use, and now we're having to do so again after about three months with this one, but at least it's under warranty!) but the technology itself is absolutely indispensable.

We were going to start working on some "sleep training" tonight to get her to start being able to fall asleep in her crib instead of in our arms, but she "cheated" tonight by passing out before the end of dinner and staying asleep even after I moved her to the crib. Funny baby! We're not complaining about that (!) but it's a bit of a letdown after we psyched ourselves up to start working on this with her. Just goes to show that she's got a mind of her own, our baby!

Tuesday, July 19, 2011

SICC visit

Eliza had another follow up appointment at the SICC (Special Infant Care Clinc) today. We met with the nurse, physical therapist, neonatologist fellow and Eliza's neonatologist one after the other. There's a reason these appointments usually take 3 hours! Everyone was impressed with her growth and progress in most developmental areas. Of course she is still behind but they could tell a big difference (glad they agree!) from our last visit. She has low muscle tone (hypotonic) especially in her trunk region. This was our main take home from the visit - more physical therapy is needed. Fortunately, we were already in the process of increasing her physical therapy visits to twice a week. Hopefully with some help from PT she will be able to sit and maybe roll over by her birthday.

Eliza is now 13 pounds 11 ounces, and 24.5 inches, which brings her up to about the fifth percentile for her adjusted age - she's catching up slowly but steadily! We're not paying any attention to where she is on the growth curve based on her actual age (hint: she isn't). That's a more long term goal: be on the non-adjusted-age growth curve by age two or three years.

The PT and doctors confirmed that with Eliza's lack of feeding progress so far she will probably continue to have feeding difficulties requiring g-tube nutrition for some time to come, probably two or three years at least. Disappointing but not much of a surprise to us at this point. Eliza still really has no interest in eating and even when we can get her to take a little from the bottle (about 40 mL max) it requires lots of cheek and chin support from us because of her underdeveloped sucking and swallowing muscles. She also doesn't seem to feel hunger or at least has no connection between it and food.

Thanks to (or despite?) Eliza's growth, we came home with big changes to her feeding plan. She needs more volume and more calories, but since she still has reflux issues that will be a challenge. To help with this they want us to start start using the feeding pump for a slow continuous feed overnight, and also switch from feeding her every three hours to every four. (We don't quite understand why doing fewer, larger feeds is supposed to help with her reflux - we're hoping to get that clarified soon.) This schedule change will be an interesting change to implement; she's been eating "q3h" ever since we brought her home. We are also reducing one of Eliza's reflux meds. No more Zantac! We will be continuing with higher doses of Reglan and Prilosec for now.

Our next SICC is not until early November! That will be her first diagnostic visit, with a child psychologist, hearing and vision tests, and so forth. Even then that won't tell us a whole lot about her long-term prognosis, but will establish a baseline to compare against at her subsequent diagnostic visits (at 18 and 30 months, I believe) to measure her progress. It's a challenge to think about and pay attention to both the short term and the long term where Eliza is concerned; we always feel like we (and her doctors) are potentially overlooking something. On the one hand it's easy to see how her short term issues and goals (feeding schedules, growth, PT, etc.) lead into her long-term development, but on the other hand, we can't help but worry about long-term issues that either are hard to spot in the short term or won't even show up until later (such as the possibility of cerebral palsy or other long-term impact from her early brain bleeds, her vision development after ROP, and so forth). I guess all we can do is focus on the short term for now and let the long term take care of itself!

Saturday, July 16, 2011

Progress

Eliza's development is a funny thing. In so many areas she is making very little or no progress for what seems like a very long time. Some areas even seem to be regressing - she's not trying to roll over very much lately, nor is she babbling nearly as much as she once did. But then, every so often, she just has a sudden breakthrough that comes from nowhere. Cases in point:


Reaching for things. She used to never do this. Now she can even reach up off the floor to get something above her, and does so all the time.


Grabbing her knees and even her feet. When she first came home, she wasn't even flexible enough for us to help her into this position, but lately she's become much more flexible and has started to bring her knees and feet up on her own and play with them.


Even growing hair on her head. She was bald for a long time, then had only peach fuzz for a long time after that. Lately it's started to really take off, though it's still longest and thickest right on top of her head and nearly nonexistent on the temples. Heather's taken to styling it as a little mohawk, which looks very fetching.

Eliza and Claire

Remember Claire? Eliza's BFF from the NICU? We finally got a chance to meet up with her and her family today. It was the first time the girls have seen each other since being in the NICU together! We had a great time getting to see them and visit. Wish we didn't live so far apart!

We almost didn't make it out since on the way one of our tires decided to instantly go flat while driving down the interstate. Fortunately Glenn was able to change the flat and we located a Discount Tire place with our handy dandy GPS. Thank goodness for technology! All in all we were only about 1.5 hrs late! :)






Being awfully patient waiting for her ride to be fixed!

____________________________________________________



All smiles! These girls have come so far! Look at the difference from this picture:

______________________________________________________









Eliza wanted Claire to have a pair of her favorite things, Baby Legs!

Claire was more impressed with the cardboard wrapping though!

Oh look both babies wanted the cardboard!

Whoops mama changed out the cardboard for some ribbon...

...........

Total meltdown!

They really did great after a long day of traveling, missed naps, sitting through lunch with us adults, and then posing for a photo shoot. Those preemies, tiny but strong! 


Wednesday, July 6, 2011

Twas a Happy Fourth of July

We had a nice and simple Independence Day here. Glenn's sister came up and visited and we grilled out for lunch with some friends. After a full day of enjoying the holiday, the whole family fell asleep before the fireworks even started. :)



Trying out flying in the back yard.

Sporting the red, white, and blue

Making silly faces with Aunt Emily

Helping Dad bring in the flag before the thunderstorm!