Catching up again

So, what's been happening for the last two months? More of the same, mostly, which is one of the reasons we haven't been posting much.

After another 2 rounds of antibiotics Eliza finally fought off her colds and ear infections for a while, getting a much-needed break from snotty noses, fitful sleeping, and general discomfort. Since she'd had such a rough time even so early in the fall cold and flu season, we decided to go ahead with getting ear tubes placed. It took a while to get an appointment for the surgery - she even came down with another new cold before then! - but she finally had the tubes placed two weeks ago. Seems to be healing fine so far and no more infections yet, so fingers crossed that the good health continues.

We took Eliza to the NC State Fair in mid October (just like last year) with mixed success. We went first thing in the morning to beat the crowds, but as a result it was still very chilly outside and Eliza was less than thrilled to be out and about in the cold and having to wear her warm coat. She liked seeing the animals inside the expo center, though, especially the goats and donkeys. We had the speedy tour of the fair since we were in and out after only 45 minutes, but we pretty much saw everything we wanted to see nonetheless!

Then and now!

The next weekend we took Eliza on the Bull City Coop Tour to visit different backyard chicken coops around Durham. Eliza liked the chickens a lot (which is a good thing since we're raising some birds of our own... but more on that in a separate post.) We even got interviewed and mentioned in a local newspaper article by name - Eliza's first taste of fame!

Also in October, Aunt Hannah and Uncle Bizzy brought Cousin Benjamin up to visit us and we all took Eliza and Benji to go "trunk-or-treating". Eliza was unsure at first, until she realized that the event was all about picking what she wanted out of a bucket, and then she quickly became a fan.

We also took her trick-or-treating on Halloween proper - though with Eliza's early bedtime, we had to go before the sun even set, so we were the first family out and about by a good margin!

Also of note: by the end of the month, Eliza's hair was getting long enough to pull up into a topknot or pigtails. Super cute!

Well, that's at least a start at getting caught back up on the blog. Future posts hopefully coming soon: the never-ending chicken coop and getting into the Christmas season.

Feeding Tube Tribulations, Part 2

Continued from this post...

Everything went pretty smoothly that Friday night. Saturday morning we noticed that it was much more awkward to connect her extension tube to the button but we didn't really think too much about it. Saturday night Eliza started puking formula. If you've been paying attention you know that that's not supposed to happen while being fed through the J port because there shouldn't be anything in her stomach. Sunday too we could tell she was a little more uncomfortable during her feeds but since it was the weekend we just tried to hang tight until Monday.

After talking to the GI nurse on Monday she asked us to come in for an X-ray and possibly to have the tube replaced. She said that if Eliza was puking formula during J feeds then the J tube most likely had changed positions and was coiled in her stomach instead of feeding into her intestine like it should be. I asked if this was a common occurrence for G/J tubes and she said "It does happen, but never this quickly."

And exactly as predicted the tube was curled in her stomach, in the wrong place. Fortunately the re-placement of this tube went much smoother. I requested some lidocaine for her belly since she was already so sore. The resident was extremely quick, efficient and actually acknowledged Eliza and talked to her throughout the whole procedure which probably took 10 mins. After questioning the radiology folks about why this happened so fast they said we needed to make sure we weren't rotating the exterior "button" of the tube. This is fine with her old G tube, but not with a G/J tube because of the problems it can cause with the J tubing inside her, as we had discovered. It would have been nice if anyone had warned us about that, because when we'd had the button previously placed on Friday, they'd put it in "upside down" so that when we hooked the feeding tube up to it the tube was running up her body toward her face instead of down and out of the way. Naturally after a couple of rounds of that annoyance, Glenn had just turned it around right side up to fix the problem - whoops! Thankfully this time it was put in right side up from the start.

After all this chaos I talked to our Gastroenterologist and we discussed if there were any more problems with the G/J tube we would have to come up with a plan C or D since we weren't willing to continue subjecting Eliza to this. Fortunately we haven't had anything else this dramatic happen with her tube since then (knocking on wood here). She had several weeks of soreness and sensitivity that made everything a little tricky and I think it took her a while to get used to NOT having anything in her stomach at night.

All in all I think the G/J has helped us get a little closer to some of our original goals. The puking is a little better. The interest in eating was (yes, I said "was"!) better. Her comfort at night seems better.

But after a couple months I think we've realized that it's not going to be the only answer. The GERD and interest in eating aren't enough better. So we've continued looking into additional ideas, trials, medical professionals and approaches. We have also been advised to start considering an intense in-patient feeding clinic. There are a few around the country but none in North Carolina. We are looking at ones in Virginia, Maryland and New Jersey. I've heard and read that these can make a huge difference in a child with feeding issues so we are hoping to get on the waiting list for one in the not too distant future. A few of the negatives - questionable insurance coverage, 6 month waiting lists, 4-6 week stay at the clinic (for all of us- no idea how this would work for Glenn). So nothing definite so far, a lot to research and think about, but it's a next step we're considering.

Eliza's development

We haven't been posting much lately, have we? Daily life seems to be taking so much of our time lately that it's hard to make time to sit down and write a blog post. I guess it's been almost two months since the last post in which we talked at all about Eliza's development. So, since December, what's new with Eliza?

She's up to 10 teeth now - all eight of her incisors plus two upper molars that have just put in an appearance in the last couple of weeks. Guess we're gonna have to start learning to brush her teeth soon! (Since she doesn't really eat anything by mouth that would gunk up her teeth, that's been a lower priority than it might otherwise be...)

She weighs over 22 pounds now, and getting to be quite an armful to carry around. Eliza's continuing to move up the growth charts overall, and she'll have to graduate to a toddler car seat pretty soon!

Eliza has learned to clap and laugh. Both of these new skills put in an appearance at Christmas time - whenever a roomful of family members were talking and laughing together, Eliza would laugh along with them - it was super cute! She hasn't laughed much since we came home from the holidays (we're trying not to read too much into that...!) but she continues to clap a lot, especially when something is entertaining or pleasing to her. Yay communication skills!

She's gotten good enough at sitting now that she's comfortable leaning forward or sideways to reach for things. (When she first learned to sit on her own, Eliza was pretty much "locked down" and wouldn't move around at all if she could help it.) She's also much more comfortable prone (lying on her tummy or propped up on all fours by us) than she ever was before - she'll play with toys for several minutes before rolling back to her side, and doesn't seem at all fazed or stressed by being on her tummy any more.


We're working very hard in PT (and on our own between PT sessions) on teaching her the skills to transition between sitting, side-lying, and lying prone. All of this is especially challenging for her as a micropreemie, but she seems to be making good progress lately thanks to all the hard work. Just in the last few days, she's finally figured out how to repeatedly roll from her side to her tummy by herself, something that we've been watching for since last May. Hurray! She's clearly getting bored with staying in one place for a long time, so she's really motivated to get around now however she can - and rolling over seems to be a good starting point!

As far as the more long-term prognosis goes, we've been reminded that as a micropreemie who suffered a grade II IVH (brain bleed), Eliza continues to be at significantly elevated risk for conditions including cerebral palsy, learning disabilities, and ADHD. The intensive PT exercises we've been doing to help with her low tone and learn to get around on her own are also essential for minimizing the likelihood/severity of cerebral palsy, especially. Also, we've been grappling with the awareness that even as Eliza's been making progress, she's falling "further behind" compared to the expected development of a baby her age. (In other words, for every "month" of developmental progress she's achieved, it's taken her more than a month to get there.)

At least one of her therapists seems to think this is not uncommon for babies like her - they fall further behind before they start to catch up long-term. She says that developmental delays can tend to be more "fractional" than "relative". So it's not a matter of her being 3 months developmentally at age 6 months, 6 months developmentally at 9 months age, 9 months developmentally at 12 months age, etc. Instead, it's more likely (and matches with what we've experienced so far) that her development will continue more like 3 months developmentally at 6 months age, 6 months developmentally at 12 months age, 9 months developmentally at 18 months age, etc. At some point (I guess as "normal development" begins to slow down?) this trend will reverse - she will hopefully not be 9 years developmentally at 18 years age! - but it seems like it will be a long time before we're there. It's been a really sobering (and stressful) message, but all things considered I'd rather be informed and have realistic expectations. We really can't predict her actual long-term development until we actually get there, so we will just continue to remind ourselves to enjoy the journey, and celebrate each step she makes!

"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.

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.

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!

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!

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!

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. ;-)

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.

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!

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.

G-tube

Eliza had surgery to install her gastrostomy tube (G tube) early Tuesday morning. The surgeon went in through the same incision where her ileostomy was, in an effort to spare her yet another new scar, an effort we appreciate for her sake. By his account the surgery went very smoothly, and we were able to join her in the recovery room after only a couple of hours.


Eliza in her hospital gown prior to surgery - it was just a bit too big for her...

I think our first reaction on seeing the G tube was surprise at how BIG it is. All of the pictures and videos we'd seen (when trying to decide whether to get one) had shown older babies and children, so proportionate to Eliza it seems quite a bit bigger. I don't have any good pictures of it, so I'll try to describe it instead: The tube comes out of her stomach a little above and to the left of her belly button. It's about a quarter inch in diameter and nine inches long (compared to a 21-inch-long baby, that's big!). At the end of the tube there are three different ports - a big one (for milk), a small one (for syringes of medicine), and a special port for adding or removing water from the "balloon" on the other end of the tube (insider her stomach) that holds the G tube in place. (We don't have to worry about that last one for several weeks at least.)

We'd been concerned about a challenging post-op recovery, since after her last surgery Eliza had needed to stay on the ventilator for two days, but this time, Eliza did amazingly well. She had actually already extubated herself (oops!) by the time we got to join her in the recovery room, and she didn't stay groggy for long and was back to her normal (hyper-?)active self by the end of the day. She was still, of course, admitted to the hospital for monitoring for the next couple of days to be safe and get her the painkillers she needed.

While we were in the ICN and TCN at Duke, the general day to day experience was of a stressful, unpleasant medical situation ameliorated by good, caring people. With Eliza as an admitted pediatric patient, however, the situation was reversed - her actual recovery over the next two days was fairly smooth but several of the people we had to deal with made it all worse. Several members of the pediatric nursing staff did not seem to respect us as her parents - they talked down to us, dismissed our concerns and questions, and just generally did not seem to welcome our presence.

The worst of it, I think, was Thursday morning. First, some background. On Wednesday, 24 hours after surgery, we began putting milk down Eliza's G tube to confirm that it was working properly, but we had some problems with it intermittently not draining properly (milk would just sit in the tube, not flowing at all). Everything we'd been told beforehand had indicated that with the G tube, the likely challenge would be keeping the milk from flowing too FAST (since the G tube is larger than her old NG tube and connects directly to the stomach), so this seemed worrisome. We asked the nurse practitioner about it, but she dismissed it immediately as "Oh, it's just a positional thing, you just need to hold her differently." (Are you an expert in G tubes? No? Then why not contact the surgical team or at least the resident doctor, rather than dismissing us out of hand?)

Then, the next morning, we heard the surgical team rounding with that same nurse practitioner outside our room's (closed) door. We were absolutely shocked and dismayed to hear her describing our concerns not only incorrectly ("the milk was flowing more slowly in the tube then they'd like it to") but also in the most caustic tone of voice ("well, I TOLD her that it was just POSITIONAL, but...") After thirty seconds or so we couldn't take any more of this and had to open our door and join in the conversation to set the record straight. Rude, perhaps, but she was being completely unprofessional and misrepresenting the previous day's events to boot.

(The surgery team agreed that the lack of G tube drainage was not a normal thing, by the way, but didn't have any suggestions for resolving it. My best guess is that it was a matter of post-operative swelling or similar, as the issue seems to have gone away on its own for the most part.)

We'd expected Eliza to stay in the hospital through Friday, but by Thursday afternoon we'd had enough. Eliza was healing well, needed nothing more than Tylenol for her pain control, and in general staying in the hospital didn't seem to be doing more for her than being cared for at home, and was stressing us both out as well, so we managed to get her discharged at 5 PM on Thursday and brought her home, where she continues to do just fine. Thank goodness.

So far the G tube does seem to be a significant improvement over the NG tube. We don't have to keep taping anything to her face now, and while we don't want her pulling on the G tube any more than we did the NG tube, the G tube is less in the way (baby hands tending to go to the face) and can be tucked away under her clothes when not in use. The early issues we had notwithstanding, milk generally flows much more easily and with less "persuasion" required. She's already sticking out her tongue less (one of the symptoms we had that the NG tube was irritating her throat), so that's good. Really the only way in which the G tube is a bit of a step backward is that it's a lot easier for Eliza to squirt milk/meds back out of it if she bears down or cries, so we have to pinch the tube shut when connecting or disconnecting syringes. In more than one gavage feeding so far, I've watched with amusement as the milk level in the syringe drops steadily to 2 mL remaining then suddenly rises back up as far as 20 mL when she squirms or tenses up. Who knew tension could have such an impact on the liquid pressure in your stomach?

And that's where we're at today. The surgery went smoothly, Eliza is home with a G tube, and we're free of the questions of whether and when to get the G tube - free to again focus our mental energy on moving forward with Eliza's development and feeding. Today, playing in her crib, she reached out, grabbed a toy hanging from the side rail, and pulled it to her mouth to give it a good licking - the first time I've seen her do that. I suspect the era of baby drool on everything she interacts with is about to start - I can't wait!

Six Months Old

Today we celebrated Eliza being six months old! It's quite the shocker to think we've had her around for 6 months now and to take a step back and see how far we've come in these months. She's quite the unique baby... six months old but only a little over two months adjusted (2 months since her due date), but acts less than even that since she is just 7.5 pounds. She is working hard at catching up and everyday we see little changes and big strides in her development.

Since coming home from the hospital she's been working on her babbling. It's the cutest thing to hear her "talking" to us or anyone that will listen. I remember the first few weeks in the hospital, when she was still intubated, wishing I could hear her cry. It was so hard to not hear anything from Eliza while the other babies in the room were able to easily make their presence known. Now not only do we get to hear her fussing but her happy sounds too!

She also is tracking us and objects with her eyes! We worried about this after her ROP issues and laser eye procedures but it seems that this is just one more worry to cross off the list. Who knows how far she will actually be able to see considering her parents are very nearsighted but thats a different story. :)

Last week we had our first follow up visit with the Special Infant Care Clinic (SICC) at the hospital. Babies that spend a significant amount of time in the NICU are followed by SICC after discharge to make sure they continue to develop appropriately, provide any therapy they may need to catch up and follow up on any ongoing medical issues. Of course most of our 3 hour appointment was spent talking about our baby girl's feeding skills. More changes to the plan and trial periods because of her continued frustration, disorganization when eating, and her very frequent fussiness. But all in all, the professionals believe that things are going very well since: a) she's continuing to gain weight -  7.5 pounds! newborn diapers already getting a little tight! b) she still WANTS to eat (AKA no oral aversion)  c) she hasn't been admitted back to the hospital. Apparently 50% of babies born before 26 weeks are back in the hospital within a month. It's been almost 3 weeks since we left the hospital (already!) and so far it's not looking like there would be any reason that Eliza would need to go back! (Yeah I know, knocking on wood.) I found it to be a funny marker of how Eliza was doing -- "Hooray! You aren't back in the hospital, you are doing great!" That's one way to look at it I agree. :)

This week we've met with our county coordinator for the Early Intervention Infant and Toddler program. She is automatically qualified for this program because of her birthweight and age. We are in the process of putting together a plan for early intervention and so that she will be able to get even more help in any areas she needs. Good stuff.

Happy 6 month birthday Eliza..we are so happy that you are finally home with us and we are looking forward to each new day with you!

Eliza update

So far, two of the ideas about what's happening with Eliza have turned out to be significant, and we've ruled out two others. Still waiting on the rest.

Things we've confirmed:

1. Getting tired out / frustrated by needing to feed so much - problems with the bottle nipple?

We tried a slower-flow nipple but that didn't seem to help much. We had a meeting with a different speech therapist (baby feeding is covered by both speech therapy and occupational therapy teams, which is a bit odd), and she suggested that we actually try a faster nipple instead, as it seemed like Eliza was having to do a lot of sucking just to get one mouthful of milk to swallow. So now we're using the "level 2" nipples and that seems to be helping a lot - she's taking more food at each feed, more quickly. Yay! We just have to be careful to not overwhelm her with too much milk when she's first starting each meal.

She's maxing out now at about 60 mL (2 oz) per feeding, and is eating about 7-8 times a day (every 2-3 hours during the day and every 3-4 hours at night). It's a lot more food than she used to eat - we're glad!

2. Urinary tract infection.

Yup. We got confirmation of this yesterday afternoon. All we know at this point is that it's gram-negative rods again (sound familiar?), and we're still waiting for identification of the specific species, but that's enough info to start her on antibiotics. Mixed feelings here - we're not glad that she has an infection again, but we are glad to at least have an explanation for why she hasn't been acting herself lately, and now we can do something about it. Treating this will probably delay her discharge, but we're not sure for how long.


Things we've ruled out:

3. Ear infection - her ears have lots of wax but do not look inflamed.

4. Thyroid dysfunction - her test results came back normal. Whew.


Still uncertain:

5. Intolerance of fortifiers. She's still on plain breast milk for now; they may try yet another different additive tomorrow if she eats well enough today. This one is thoroughly pre-broken down so it's supposed to be really easy to digest.

6. Reflux. She is still having problems with this even now that she's been on the Prilosec for a couple days - we're not sure if the switch really made any difference.

Delays

As usual with Eliza, getting too optimistic or making anything resembling plans for the future seems inevitably to lead to disappointment. Bah.

Last week, Eliza's care team had suggested that she had a good chance of "going to camp" (ICN superstition - no one likes to say "going home" lest they jinx it for her) on Wednesday of this week. It was looking like a good possibility for a while, too...

I've started and discarded two drafts of this post already. It's so frustrating and exhausting, and the specific details of the last several days are already blurring in my mind. (Sleep deprivation might have something to do with that...) You'd think by now that we'd be able to handle whatever life in the ICN can throw at us, and this latest complication and delay is perhaps, in the grand scheme of things, a minor speed bump compared to things we've already dealt with - but somehow, having glimpsed the prospect of finally making our escape from the hospital, having it vanish again, even for a few days, feels like the final straw.

For the last several days at least, and possibly longer, Eliza has been having trouble with her feeds. She'll be irritable even while eating, sputter and drop her heart rate (bradycardia) suddenly mid-feed, stop sucking effectively at the bottle and instead waste time and energy inefficiently chewing on the nipple, have spit-ups even hours after finishing the bottle... it just generally hasn't been working right. Especially frustrating since before her last surgery, she seemed like she was getting pretty good at feeding....

So no going home from the hospital until we can figure out what's causing her to have these problems. There's a wide range of theories at the moment - here's some of the possibilities (and what's being done to investigate):

1. Intolerance of the fortifiers that are being added to her milk to help her grow (we've tried several different kinds, and are currently taking them out entirely for a while to see if that helps, but eventually she'll need to have these put back in in some form)


2. Getting tired out / frustrated by needing to eat so much more food than she ever needed before the surgery (not much that we can do if this is the problem...?)


3. Reflux becoming worse due to the increased amount of food she's taking in (so we're switching from Zantac to Prilosec, in case that makes a difference)


4. New bottle nipple being too fast-flowing for her liking (so we're trying a slower-flow nipple for a bit)


5. Ear infection (going to examine her ears today)


6. Urinary tract infection (going to check this today too)


7. Thyroid dysfunction (drew labs to check this today)

At least right now we have some actionable ideas as to why she's having trouble with the feeds. We've been at the hospital for the last three days, and did "rooming in" with Eliza the last two nights to keep an eye on her and try to help her eat, and for most of that time, the only theories anyone seemed to have were #1 and #2 above - one which is unavoidable, and one which can only be solved by time and growth. Plus, up until now, her hospitalization has always been a medical issue - it was starting to look like despite apparently finally having no active medical issues that would keep her in the hospital, the developmental issue of her feeding skills would keep her there anyway, which was massively frustrating. That might still turn out to be the case, but it might also be a new medical issue, which would at least suggest an immediate course of treatment. We'll hope to find out some more information soon.

After surgery

Eliza's surgery on Thursday went as well as we could have possibly hoped. They took her down to the O.R. right on schedule, and called out to the surgical waiting area at 2:15 to let us know that they'd started - right on time. By 3:45 the surgeon was able to come out and tell us (including Eliza's cheering section of Nana, Granny, and Grandma and Grandpa, all of whom were able to be in town for the surgery) the good news. They'd inspected the full length of her intestine and not found any remaining perforations, and had flushed liquid through it easily with no sign of strictures or obstructions. She only lost about 2-3 cm of intestine during the reconnection process, and after stitching her ends back together they were able to confirm that the connection was watertight. All in all a very successful surgery.

When we were able to go back in to the ICN to see our recovering surgical patient, we were struck by how much bigger she looks without a giant ostomy bag stuck to her stomach and stomas protruding into it. It's a more dramatic change in her appearance than we were expecting.

Now, of course, it was time for her to rest and recuperate from her major surgery. That's been difficult so far for her and for us - it's been a real balancing act between giving her enough morphine frequently enough to keep her pain under control, and on the other hand not giving her so much that it depresses her breathing and requires additional respiratory support. (She was put on the ventilator for surgery and stayed on it for about 24 hours afterward, then graduated to the nasal cannula where she remains for now.)

Heather was at the hospital from 8 AM to 11 PM yesterday, watching and caring for Eliza with assistance from her mother and grandmother (during the day) and me (during the evening). Eliza was having a rough time of it all day, causing Heather a lot of stress and exhaustion. She was having bradys and desats every five to ten minutes - she would flinch or wince, causing her pain, and then drop her heart rate or hold her breath. Sometimes she would be OK for a while, letting us think that she was starting to do better, then surprise us with a sudden big brady. She had several events where she would brady continuously or repeatedly for several minutes, and she had at least one desat where her oxygen level dropped to 20% (!) and took a seeming eternity to come back up to healthy levels. It was seriously scary and stressful.

To add to our stress, the nurse practitioner in charge of Eliza during the day was tending to err on the side of not allowing her enough morphine. We had to really fight to stop cutting back further on her dosage and instead give her as much as she needs. Shortly after we left for the night at around 11, they finally managed to give her enough morphine and she was able to sleep well from midnight to 6 AM or so.

We're back at the hospital together today. Eliza has already had a few bradys and desats this morning, but we're hoping for a better day than yesterday. The care team today is okay with keeping her at her current morphine dosage if she needs it (they were even discussing increasing it a bit!), not trying too aggressively to wean her off the nasal cannula, and just in general leaving her alone to rest and heal. Hopefully that's exactly what she needs right now. Heather is holding her for the first time since the surgery as I write this, and they both look less stressed and more content then they ever did over the previous day and a half.

Reanastomosed

Eliza is scheduled for 2pm tomorrow to be reanastomosed. This surgery is to reverse the surgery that she had when she was 7 days old because she had developed either NEC or a spontaneous bowel perforation. To keep her intestines from dumping stool into her abdominal cavity they pulled out a loop of her small intestine as an ileostomy so that her lower bowel could heal. Since she was so small and fragile when she underwent the inital surgery (about 1 pound) they had to be extremely careful. One of the comments that the surgeon said when asked how it went was "well, her insides are like wet tissue paper." I'll never forget that. (Yep, we have the same surgeon tomorrow... hopefully the description of her insides will be a little more positive this time :) ) 

She (and we) have been dealing with this for the last 4 months. And it's finally time to fix her. This surgery is a big deal and quite invasive but it's what she needs and we are glad that its time to finally do it. Fortunately from the study they did on her last week it looks like the downstream part of her bowels look great. They don't see any strictures or other problems, though they will not know for sure until they get inside. Hopefully everything looks great and the surgery goes pretty much as intended. That's what we'll be hoping, praying and crossing our fingers for!

R.O.P.

Eliza's surgery is tentatively on the schedule for Thursday afternoon, just two days away. Of course that means it's time for something new to come out of left field and throw us for a loop... and as usual, life does not disappoint.

After Eliza's last eye exam a week ago, the ophthalmologist said there was "some tissue" in her right eye that didn't look quite right and would need to be monitored closely. After the followup exam this week, we have been told that Eliza's right retina has hemorrhaged some and looks to be at risk for retinal detachment. This was a real shock, especially since three weeks ago we were told that her eyes were looking great. Her left eye is still looking good, but the right eye... not so much.

The ophthalmologist wants to have a retinal specialist come by to offer an opinion on whether they can keep monitoring Eliza's eye for now, or whether she will soon need a surgical procedure called a vitrectomy... Apparently they've done all they can with lasers at this point, and the next step if her eye needs it is actual (invasive) surgery. Ugh. From what we're hearing, and from what we've seen online, if her retina does detach and/or a vitrectomy is needed, the outlook is not good for the vision in that eye. Unfortunately, said retinal specialist (while highly rated - apparently babies come to Duke from across the state for her to treat) is currently out of town and won't be back and able to take a look until Monday, which means we've got most of a week to worry and wonder before we can get any more definitive answers.

The extra wrench in the works is the concern over Eliza (possibly) having two surgeries so close together. If things go as planned on Thursday and she gets to have her bowel surgery, but then the retinal specialist takes a look on Monday and decides that they should operate on her eyes ASAP, this would be less than a week between surgeries - which they really want to avoid since that would be really hard on her health, and she might not even be stable enough after the first surgery to safely go back for the second one as soon as she might need to do so. Plus there's apparently a small but real risk that the stress to her system from the bowel surgery might cause her retinal condition to deteriorate further... so should we postpone this week's surgery until after we know more?

On the flip side, though, we have no way of knowing if or when the retinal specialist will recommend surgery, and if we postpone her bowel surgery, not only is there the possibility of a lengthy "wait and see" observational period for her eye (during which time of uncertainty, sending her off for bowel surgery would probably not be recommended), but also there's the question of how long it would take to get her back on the surgery schedule once she got the go ahead - given how long it took to track down the surgeon and get her on his schedule this time, who knows how long the next time will take.

So we're really stuck between a rock and a hard place. All of the reasons for going ahead with the bowel surgery as soon as possible are still in place (infection risk from PICC line, digestive difficulties, ostomy swelling and prolapse, liver damage from IV nutrition, etc.), but now we have to counterbalance that against the risks to her eye and vision if we don't delay the surgery. Most of the doctors and nurses seem to feel that it's still in her best interest to go ahead with the bowel surgery now, and we feel the same way, but it's a very tough decision to make - we really hope we're doing the right thing for our baby girl.

Getting ready for surgery, hopefully?

As Eliza closes in on the magic number of 2.2 kilos (she's at 2.195 tonight!), that means it's almost time for her surgery to repair her ostomy... or so we hope. We've had a heck of a time trying to pin down the surgeon to actually meet with us and put her on the schedule; it's like he doesn't actually want to operate on her. One of the nurses told us this is pretty common - they try to stall as long as possible so the baby can keep growing, making the surgery easier. Understandable but frustrating - this is the milestone we were given to aim for (after the previous milestone of 2 kilos...), and the surgery is the single biggest thing standing between her and coming home.

Plus, it's more and more clear every day that this should be done SOON. Her PICC line (required since she isn't getting enough nutrition from her digestive system, more on that later) was probably the cause of her recent infection, and is always a risk for introducing another one. The IV nutrition from the PICC is hard on her liver, though she's handling it well so far as we know. Her stomas are continuing to be more prolapsed and more swollen every day, and are starting to get eroded and lacerated from rubbing up against her ostomy bag.

In short, she's reached the point where we (and all of her care team) agree that it's better for her to get the surgery NOW rather than to keep waiting. If only we could get the surgeon to agree! We've tried to meet with him the last two days with no luck (though yesterday he did stop by after we'd already left for the night) - here's hoping tomorrow's the charm!

We did get one step closer today - they did a barium trace to confirm whether the "downstream" parts of her bowels are in good shape to start being used once they reconnect her. The results look good - everything seems to be in good working order - but they also confirmed something we'd been suspecting. Her ostomy is not nearly as far down the line as they'd been telling us; she has a significant amount of small intestine downstream from the ostomy that is therefore not currently available to aid in digestion. This is good news, since it explains why she's been dumping rather than digesting efficiently, and why she hasn't ever been able to gain weight well from purely oral feeding, but it's a bit frustrating too that we've been mistaken for the last four months. Still, it's a good sign that she should be able to do much better once she has the surgery.

Here she is twiddling her thumbs - she can't wait either!