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

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.


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:

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.

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!


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!

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!

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,



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!


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.