Tuesday, November 15, 2011


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!