32 Weeks and Counting!

The grand week has arrived. Indulge me while I tell you why I'm so excited for this milestone:


Below are the four MAJOR risks of Prematurity (click to enlarge). These are the risks that are most often life-threatening, so I didn't include things like infections, blindness, deafness, etc. To the acronymnally challenged, BPD = lung problems, IVH = bleeding on the brain, NEC = rotting gut, PDA = heart trouble:


I added the column for "emotionally safe" because this is when the risks of major, long-term complications of all these risks go WAY down. The babies may still get them, but not as badly as the micro preemies (under 28 weeks). The column for "statistically safe" means the risk has altogether disappeared as a result of prematurity alone.

Although that is the "math," here is the reality:
--BPD: even though the problem doesn't completely disappear until 34, 32 weekers rarely need the ventilator. If they do, it's usually only for a couple days (Brynn was on it for 2 months). Yes, they may need C-PAP or a cannula, but the lungs will be fine overall.
--IVH: The NICU stops doing routine MRIs (checking for head bleeds) after 32 weeks because they are so rare.
--NEC: only occurs past 32 weeks if baby has been deprived of oxygen due to pregnancy or delivery problems.
--PDA: although it can occur even in a full-term infant, it's not going to cause major problems or require surgery as a result of prematurity if the babies are over 32 weeks.

And even though it's not on the table above, the NICU stops routine eye exams at 32 weeks as well. So ROP isn't a problem, either.

Can you see why I'm so ecstatic?

Aside from being excited that I have officially reached 32 weeks, here's another couple reasons I'm excited:

1) I was taken off Procardia a few days ago because my blood pressure got dangerously low and I was getting pretty sick. Everyone was nervous I'd have the baby because even while on the Procardia, I was having stronger and more frequent contractions with each passing day. But, oddly enough, all the contractions stopped as soon as I was off the Procardia. I only have a few here and there and they are much lighter.

2) Doctors and nurses are starting to think I could actually make it full term now--especially since contractions slowed so much after being off Procardia. Maybe not, but once I get to somewhere between 32-34 weeks, the pelvis plus the size of the baby's head do more to hold the baby in than the cervix does. Wouldn't that be weird if I got that far??? If Heidi didn't need a NICU stay at all??? It really seems quite unfathomable to me, but I guess you never can tell . . .

3) Last, but not least, I have an adorable pregnant belly (if I do say so myself) that is impossible to photograph and always looks bigger in real life than on the camera:


WAHOO!
Natalie

Ultrasound Day

The good news: I'm still pregnant.

The bad news: What little cervix I had when admitted on 8/2/10, is now almost 1/2 of what it was. I'm now down from 1.4 cm (where I was on 8/2/10) to .787 cm. Since normal is 4 cm, in regular lingo I'm over 80% effaced.

All this means that baby Heidi will almost surely be born sooner rather than later. Friday is a big safety milestone (28 weeks) but I'm still really hoping that by some miracle I can make it to 32 weeks. We'll see what the Lord has in store.

For nerds like me, here's the ultrasound of my cervix:


here's what that jumbled photo means:


On a less technical note, here's the baby:


If you're like Matt and have a hard time making out what the heck this is, here's the labeled version:



Grateful for my .787 cm still left,
Natalie

Fascinating Statistics

I'm kind of a statistics freak. Not that ANY kid comes with a guarantee around his or her neck, and there is no such thing as a "crystal ball" (as our NICU Neonatologists would often tell us), but it's still interesting just to see what the odds are. Although I already knew most of these general statistics, I thought my readers might find them interesting. I found the following info on About.com:

Survival Rates for Preemies:
23 weeks: 17%
24 weeks: 39%
25 weeks: 50%
26 weeks: 80%
27 weeks: 90%
28-31 weeks: 90-95%
32-33 weeks: 95%
34+ weeks: Almost as likely as a full-term baby

The website also stated:
"In [surviving] babies born before 26 weeks, only 20% will have no long-term problems [in Brynn's case, that's 10% of the total when you consider that 50% of 25-weekers die]. About 34% will have a mild disability, such as cognitive impairment or near-sightedness. Another 24% will have a moderate disability, such as visual/hearing impairment or cerebral palsy with the ability to walk. Finally, 22% [in Brynn's case, 11% of the total] will have a severe disability, such as cerebral palsy and no ability to walk, blindness or profound deafness.

"Babies born after 26 weeks also face an increased risk of learning disabilities and other problems, but the specific odds of these problems vary heavily on factors, such as birth weight and whether or not there was oxygen deprivation before birth."

First, I think it's almost funny that profound deafness is considered on-par with severe Cerebral Palsy. I mean, I understand very well that she is missing one of her 5 senses; but in my experience, deafness has to be the most adaptable of all those things listed (including many of the mild to moderate disabilities). And I firmly believe that Brynn will be able to do whatever she wants in life, deaf or not. Because she never had brain bleeds (very remarkable for a 25-weeker, especially given the added factor that we didn't have time for a C-section), we have reason to believe she won't have major--and likely not even minor--learning disabilities. So, all things considered, we are VERY blessed with her outcome.

Anyway, now you can plainly see why we get so excited with each passing week Heidi stays in the womb. Just look at the difference between 25 and 26 weeks! 28 weeks is a huge statistical milestone, as is 32 weeks. 34-week babies are pretty much statistically indistinguishable from full-term infants--other than some difficulty in the beginning as they learn to eat, keep their body temperature, and breathe completely on their own.

So bake, Heidi, bake . . .

Lastly, as an emphatic plug for OP Regional Medical Center NICU, their statistics are 20% HIGHER than the national averages. Thanks OP! We owe you SO much! Anyone living anywhere in KS Metro . . . take your high risk pregnancy and/or preemie there!


Still here,
~N

What, Exactly, is a Cochlear Implant?

Followers of my blog will notice that the four most recent posts were all published on the same day--after a couple months of absence. To all my faithful readers, I realize this is an overload of information but I finally got some time and had a lot to write. I won't be offended if you decide not to read it all. As always, I write for two main reasons: first, a journal for Brynn to read someday (I'm not a scrapbooker so this will have to do); and second, an outline to help other families going through similar experiences.

I'm assuming these two groups won't care about the crammed timing of the recent posts. But unfortunately, this means lots of info for you die-hard readers of my blog. To add insult to injury, what follows in this particular post is a rather boring, technical explanation. Have fun :)

So, what is a Cochlear Implant?

This photo below is the internal implant, which is surgically placed between the skull and the skin. Although some drilling in the skull is required to ensure the device doesn't move around, the brain is never exposed or touched (contrary to some popular legends circulating the Deaf community). The electrode array (A) is inserted into the cochlea. The magnet (B) is smaller than a dime, and the surrounding silicone is about the size of a quarter. The computer chip (C) is the gold-mine of the implant and must be preserved at all costs (unless Brynn decides she likes having surgery). In other words: no rugby for you, Brynn.

On January 28th, our little girl will receive two of these in one surgery--one for each ear (called "simultaneous bilateral implantation").


The external parts look like the photo below. The magnet (A) snaps to the magnet under the skin and allows for transfer of information from the externals to the internals. The microphones (B) pick up the sound, which is then converted to signals in (C) the processor. (D) is the battery, which can be detached and clipped to the shirt or whatever if the ear piece is too heavy for little ones like Brynn. If she hates anything on her ears at all, the processor (C) can be clipped to her shirt as well.


Brynn will start wearing this two weeks post surgery (activation day is February 11th). This wait time is because her scar needs time to heal. She'll start wearing one implant, and then a few weeks after that, we'll turn on her second implant. This separation gives the audiologist time to build a program (called "mapping") for only one of Brynn's ears at a time. It also give us parents time to adjust to a new piece of equipment.

This is the remote control, by which we the parents have all control over Brynn's hearing:

By the way, a big thanks to IPOD for giving Cochlear Corp some good design ideas. :)

Because I don't have any photos with Brynn wearing the implant yet (for obvious reasons), these stolen photos will have to do. I got them from this blog, courtesy of Google. This is what the implant looks like:


This is what bilateral implants look like:

So there you have it. Bionic ears.

Do CIs Provide Normal Hearing?

Warning: another technical explanation ahead.

Many parents of deaf children--especially those who choose to have the cochlear implant (CI)--are under the impression that CIs will provide normal hearing. Although the CI gives profoundly deaf children much more access to sound than hearing aids ever could, they simply can not replace normal hearing.

Here is a (very basic) science lesson of how normal hearing works (photos and descriptions provided by Cochlear Corporation):

1. Sounds enter the ear canal and travel to the eardrum.

2. These sound waves cause the eardrum to vibrate, setting the bones in the middle ear into motion.

3. This motion is converted into electric impulses by tiny hair cells inside the inner ear (cochlea).

4. These impulses are sent to the brain, where they are perceived by the listener as sound.

And here is how the cochlear implant creates sound:

1. The external sound processor captures sounds, then filters and processes the sounds.

2. The sound processor translates the filtered sounds into digital information, which is then transmitted to the internal implant.

3. The internal implant converts the digital information into electrical signals, and sends them to a tiny, delicate curl of electrodes that sits gently inside the cochlea.

4. The electrical signals from the electrodes stimulate the hearing nerve, bypassing the damaged cells that cause hearing loss, allowing the brain to perceive sound.

This curl of electrodes has a maximum of 22 channels to replace the millions of channels for a normal, functioning cochlea.

Here's a link that I thought was helpful in demonstrating the difference:
http://www.hei.org/research/aip/audiodemos.htm
However, you should listen with skepticism because even though this is an accurate representation of what kinds of sounds the implant is capable of creating, we can never know what happens between the implant and the brain. The brain--especially that of a child as young as Brynn--can do remarkable things with the limited information a CI can give. And most deaf adults who lost their hearing late in life report hearing speech mostly the same as before the implant.

Music, however, has mixed reviews. The last audio demonstration on this site is one of Matt's and my absolute favorite songs--but after listening to it in CI-mode, we can fully understand why many CI recipients report not liking music as well as before they were deafened. It seemed down right scary to us even at the highest channel available!

It's still amazing, however, that many children, when implanted early, report really enjoying music. I know of a CI recipient, for example, that plays the violin, another one that plays the trumpet, another one that can sing on-key (most of the time), and several more that can play the piano! Apparently they can learn to sing along with lyrics to popular songs just as well as their hearing peers.

So how is the implant inferior, if it's possible that the brain really can gather and interpret more information than the CI is actually giving?

Well, there are a few limiting factors:

First, the range of sound that a normal person can hear is between 0-120 dB. So, in layman's terms, this is between a leaf falling and a jet engine. The CI, however, can only deliver between a 70-80 dB range of sound. This means, that in order to focus on speech sounds, some of the quieter sounds must be sacrificed and the louder sounds are processed as if they were the same loudness as other things much quieter. So, again in layman's terms, this means a CI recipient is not going to hear faint whispers; and that a jet engine will sound only as loud as a diesel truck.

Because the louder sounds are thus "squished" into the same dB (loudness) range, it becomes very difficult for CI recipients to distinguish between these sounds. A characteristic environment that is very difficult for CI recipients is a noisy restaurant. So many sounds get squished together that deciphering the voice of the person who is speaking becomes very difficult.

Second, the human cochlea has millions of tiny hairs that move in accordance with the waves of sound coming in the ear (see above diagram). These hairs not only help us hear everything from whispers to jet engines, but they also help us distinguish between an oboe playing a middle C at 30 dB and a piano playing a middle C at 30 dB. Same loudness, same frequency, different tone quality. As far as I can tell, the CI doesn't really have any way of providing different tone qualities. So everything should just sound like middle C at 30 dB. Even still, many CI recipients can still decipher the difference between an oboe and a piano, so go figure. Although music is obviously still experienced differently for CI users than for individuals with normal hearing, this still demonstrates the remarkable fact that the brain is one extraordinary instrument--

And some people don't believe in an Intelligent Designer.

I digress.

One interesting story--we met a guy who became deaf in his 20s. Now in his grey-haired years, he was telling us about the first time they turned the implant on. He said the first hour was pure torture. He couldn't decipher anything that was said and everything sounded like static. He worried that he had made the biggest mistake of his life. But a few hours after that, he had a business phone call and he said he didn't miss a thing.

Other late-deafened adults report that everyone sounds either like Alvin and the Chipmunks or a scary horror film for the first few weeks. But then, things get more normal. The CI is the same as it was the day it was turned on. But the brain interprets the signals differently.

Anyway, I hope you can tell by now that the brain has more to do with the success of a CI than the CI itself. The CI is imperfect at best, completely unusable at worst--and it all depends on the brain.

The brain of Brynn, for example, is so malleable due to her age that the CI has remarkable odds of giving her a near-normal hearing life. The brain of a late-deafened adult has a history of hearing naturally and can quickly adjust to the CI's inferior signals.

The brain of a deaf adult, however, with no prior history of hearing, can not make any sense at all of the signals. Some even report dizzy spells, head pain, vertigo, or even the taste of iron in their mouths. Although the deaf adults who wear their implants for a long time say that these strange side-effects eventually disappear, their ability to process speech sounds never develops like it would for Brynn.

So to anyone considering a cochlear implant for their child: do it early or don't do it at all.

FYI

Just for those who are wondering, our tests went well--although we won't receive the results for a week or so. We stayed 24 hours in the hospital while the pH probe continuously read Brynn's esophogeal acidity levels. Anything above a 4 (up to 7) was considered normal, anything below (to 1) was considered reflux. She was a good sport since the probe went down like her NG tube and it probably felt all the same to her. It was interesting to see that although many kids get reflux most often on a full belly (lots of food to come through the sphincter), Brynn's lowest scores were consistently on a near-empty or totally empty stomach. That would explain why she often vomits 2 hours after a feed.

When they did the upper GI endoscopy ("scope" for short), they didn't see any visible irritation, but took eight tiny samples of her GI lining for biopsy--two from her esophogus, two from her stomach, and four from her small intestine. These samples will let us know if she has irritation not visible to the scope camera. Interestingly enough, the biopsies will be able to determine just about everything about any possible cause for irritation--whether it be allergy, contaminate, bacteria, acidity, etc.

We're hoping the results come back telling us she has only a fair amount of reflux so we can spare her the Nissen Fundoplication ("Fundo" for short). This operation often causes more problems than it solves. Please, oh please, just the G-tube, thank you.

Clarification

Sleep is a wonderful thing! Matt took total care of the baby from Friday evening all the way to Sunday morning--including the night feeds. Boy do I feel wonderful! I didn't even mind doing the dishes today. I feel like a whole new person and totally capable of taking on the next week. It's so good to have Brynn home and to know that my life has finally gone into the next phase. We're "real" parents now, living the "real" role--sleepness nights, fussiness and all. I love it--even more than I thought I would (especially now that I'm well rested)!

To address a couple of things that have triggered a flood of thoughtful and appreciated advice, let me clarify.

First, the NG supplies:

Before anyone thinks the NICU is incompetent, the Home Health company is ignorant, or the Insurance department is crooked, let me explain: the issue is not about whether I can get supplies. The issue is whether I can get matching supplies. It'd take forever to explain but if anyone is to blame, it is the the medical supply companies (aka Apria). Bottom line is, they organize their parts by reference number only. The nice phone staff have no way of accessing the product name or description without this magic number. Therefore, they have no way of sorting through 150 items titled "NG tube."

I have no way of accessing this magic number, though, without already having the part in my hand with the packaging that says so. I have all the part numbers from the NICU pieces, but no medical supply company covered by my insurance deals with the same manufacturer as my NICU. Thus, I have no reference number for a part that they carry. I've exhausted all my ideas (i.e. internet and calling different companies) for finding magic numbers to parts that Apria (or several other medical supply companies) might carry--all to no avail. They've sent me several supplies, but nothing coordinates with anything else.

So, I could go back to the NICU, sure . . . but how many times can a person ask for free supplies? I've tried asking for special orders from Apria and like companies, getting the Doctor's office to order them for me, and ordering them myself but each one presents new problems that so far I have not been able to surmount.

Thanks to some wonderful suggestions by preemie- and medical-savvy friends, I have a few more tricks up my sleeve. 1) See if the NICU and/or hospital can order them for me and then bill my insurance company; 2) see if the Home Health company has at least the reference numbers for NG supplies that would fit Brynn, fit each other, and be available through any one of the five medical supply companies covered by my insurance; 3) Beg the NICU for an NG one size larger and continue using my current supplies; 4) Buy them myself and suck up the additional cost that the insurance won't cover if I do so. Hopefully one of these will pan out. I'm sure Brynn won't actually starve.

Second, the G-Tube:

The therapists have informed me that it is quite common for babies to backslide once they get home. This is because they grow--their mouths get bigger, tongues get leaner, cheeks get thinner and the result is that they have a harder time controlling all the liquid in their mouths. Some spills out the front and they drool all over the place while much of it drains, uncontrolled, to the back of the throat. The babies feel like their airways are under constant attack. Some babies will aspirate (get milk in their lungs), so I'm actually quite lucky that Brynn will protect her airway by coughing, gagging, and wheezing.

Although growth is at first your worst enemy, eventually it becomes your best friend. They learn to coordinate their tongues to not only suck, but also to swallow. Brynn, however, is in a catch-22 right now. She's always had trouble sucking--but now she doesn't dare practice her developing skill because each time she has a good suck, she gets a mouthful of milk she can't control. Every time she looks like a deer in the headlights, coughs, gulps, and often cries. Her solution? Lick, don't suck.

The therapists' solution to help with the swallowing/liquid control is to thicken the milk (a product called "Simply Thick" is the best one for breastmilk and helps to not cause constipation like rice cereal, which is often used). The solution for the sucking is what it has always been--practice and tongue exercises. The great thing about the thickener is that Brynn has to suck harder to get it out of the nipple--and even then she only gets as much as she can manage to control and swallow. However, the worst thing about the thickener is that Brynn has to suck harder to get it out of the nipple. She can barely suck as it is.

Understandably, her overall oral intake has plummeted.

Eventually, we will thin the milk in tiny increments until Brynn feels confident with straight breastmilk. In the meantime, Brynn doesn't dread eating as much as she used to because she's not coughing the whole way through. Thus, she's more willing to practice sucking.

This begs the question, though, how long will it take until she is 100% oral? The answer is, we don't know--but its looking like it'll be closer to several months than several weeks. And this new timeframe has brought up the question of the G-Tube.

The only real benefit of an NG tube over a G-Tube is that it can be inserted without surgery and therefore becomes a good option for short-term feeding problems. Compared to the G-Tube, though, everything else is a drawback.

Insertion of the NG tube has to be done every 4 days to give each nostril a break, if it is being used consistently. If it is not being used consistently, it has to be removed and then reinserted the next use (or it will clog). So basically, if Brynn gets to where she can take full feeds for a day, but then is too tired the next, the NG has to be removed the first day and re-inserted the following day. Removal and reinsertion causes trauma to the throat and nose, making swallowing even harder. And worse, Brynn screams the whole time I have to insert one--this creates more negative oral experiences and makes it harder for her to associate the idea of oral stimulation with pleasant, happy things. This, obviously, leads to less of a desire to eat by mouth.

The G-Tube, on the other hand, is a quick surgery, put in under sedation (no remembered trauma), and can be flushed with a small amount of water to keep it operative if it is unused for long periods of time.

One other drawback of the NG tube is that even if it is already inserted, it still irritates the nose and throat, makes swallowing even more difficult, and makes each oral attempt that much less appealing to babies like Brynn who struggle so much with it.

Wondering if the simple presence of the NG is 90% of Brynn's swallowing problem caused me to ask the therapists what they thought about the G-tube. To my surprise, they were relieved I would be open to it. They said that most parents see it as a huge step backward but in all reality, it weans much faster than an NG. They also said that many parents, after finally consenting to a G-Tube, later say they wish they had done it sooner.

So, I'm doing it sooner rather than later in the hopes that 1) she'll get to oral feeds faster and 2) she'll be less traumatized. The fact is, though, that it takes a long time to get into the GI specialist and then onto the surgery schedule. If Brynn is super close to 100% oral by then, of course I'll stick with the NG. Afterall, she was on the PDA surgery schedule twice, only to be removed at the last minute!

All in all, I want to do what is best for Brynn's oral outcome and emotional well-being.

Still optimistic though,
Natalie

More Complete Diagnosis

The blood culture is accurate and the infection is Strep B. Apparently, this sort of random flare up is not unheard of--even in full term infants. Some 40% of all women carry this bacteria in their vaginal areas and babies born vaginally (as Brynn was) can pick it up. The bacteria stays dormant for a while and then . . . BAM. No one knows what causes the flare up.

So she has Strep B in her blood, which is actually really good because:
A) it's treatable with Antibiotics (she's on 3 different types) and,
B) they know what they're dealing with

It's bad because Strep B likes to move into:
A) the spinal fluid causing menangitis,
B) the bone tissue causing short term arthritis that must be punctured and drained, and
C) the other skin and exterior tissues.

So far, we've lucked out. It has only moved into the skin and exterior tissues, causing her cellulitis. The spinal fluid sample they drew today so far looks good, but of course it'll be 24-48 hours for the cultures to give us an accurate reading and we know for sure. The X-ray of her hip, which is right below the cellulitis shows no fluid in the bone.

We've also lucked out because the doctors measure CRP (a blood sample) to see how the body is fighting infection. Brynn's first sample came back at .5, which is normal. When they did her second CRP a few hours later, it came back as 9--which means we caught this crazy bug immediately, even before Brynn's little body had mounted a response.

Precisely because Brynn is working SO hard to win the fight against the bacteria, though, is why her breathing and bowels have all but shut down completely. Thank heaven for ventilators and drainage tubes.

If everything goes as the doctors expect, Brynn will be back to herself in a few days. She'll likely go right back to the low flow cannula, perhaps with slightly higher oxygen needs than before but not much. She'll be able to eat again (if she feels up to it), and all of this will soon be a foggy memory.

Whew.

Some light at the end of this tunnel.

Either way, we'll be in the hospital for a minimum of two weeks more (perhaps four) while she gets a full regiment of antibiotics. Maybe we'll get lucky and she'll learn to eat while she's getting better! Let's not get too excited, though . . .

Thanks again (and again) for everyone's support, prayers, and concern.

Natalie

Our Beefy Burrito Beats ROP

So I've started calling Brynn a beefy burrito because A) She looks like a beefy fat giant to me (broke 4 lbs last night); and B) she looks like a burrito in this awesome wrap by one of our nurses, Jen. If this isn't a burrito, then it's for sure an egg roll but either way you slice it, it's food. I wish I had a better picture, but this is the best one we've got so far:


One update I forgot to mention in my last fast update, was that our little girl has beat ROP. Even the doctor, a retina specialist who does nothing but look at retinas all day, was totally shocked. Here were his comments after seeing her eyes one week post treatment. By the way, since doctor handwriting is impossible to read, let me translate. It says "Plus down, down, down, down, down. N/V gone!! Marked improvement!!!" Don't you love his use of exclamation points? Brynn's ecstatic mommy does. (By the way, Plus Disease is the later stages of ROP that signifies the detaching of the retina. N/V is doctor speak for all the crazy blood vessels):

He was pretty amazed (as was I) when her eyes went from this . . .
. . . to this . . .
. . . in a matter of one week. The skinny scribbles radiating from the center of the eye outward represent the normal blood vessels and the big black scribbles represent the crazy, out-of-control blood vessels that can eventually cause blindness. Pretty much all of Brynn's bad blood vessels disappeared. Hooray!

Also, here is Brynn in her "big girl" bed. Yay! No more isolette:
Lastly, I told Brynn about all her fans, those who were so generous at our baby showers, and the many people who are still praying for her. She wanted to say a big "Hello!" and "Thanks!" to everyone:

Have a great night!
Natalie

A Step Forward! (And Some Technical Stuff, too)

As of last night, it feels as if Brynn has finally turned a corner. They always say in the NICU that babies take 2 steps forward and 1 step back. Lately, however, I'll admit it's felt more like 1 step forward and 5 steps back. But like Erin, one of my students at church, said, "You can't draw a smile without a steep downside and a low point in the middle!"

I knew Brynn's steep downside had happened, with the PDA complications and resulting inability to eat; the lung infection; her raised vent settings; her worn out veins having nowhere left for them to insert IVs; and her drastically increased spells (as defined by her blood-oxygen levels and heart rate dropping to dangerously low levels). But I also knew that the steep upside HAD to come sooner or later.

Whereas a few days ago, we didn't know what was causing her high vent settings and inability to be weaned, now we are making progress. The culprits could have been (1) the PDA, which would've meant surgery; (2) a new infection, which was suspected because she'd had a lot of yellow secretions even after the antibiotics had finished from the pneumonia; or (3) the chronic lung disease, which was getting worse because she'd been on the ventilator for so long. The treatments for each problem would be different, so nothing could be done until we knew. Finally, this weekend we got a bunch of results back: the PDA has remained quite small (still no surgery on the immediate horizon!), and the culture from the lung secretions showed no infection.

That left us with the choice to treat only the chronic lung disease and the doctor was able to start. We chose to do some very mild steroids. Unlike the other steroids I mentioned in the last post, which can potentially damage her brain, these steroids are given much like an asthma treatment. They are sprayed into the lungs and help the tissue alone, without getting into the blood stream. Although these steroids are not as instantly effective as the others, the Doctors figured they might do the trick without having to risk brain damage. And the best thing about these steroids? NO IVs! Brynn's little arms, legs, and head can finally heal from all those pin pricks!

Anyway, given this first steroid treatment, Brynn showed signs of finally going up the opposite side of this 3-week long trough! I was so excited when I walked into the hospital room last night to find she'd started the weaning process on the ventilator! To describe this, I'm going to get a little bit technical--but this blog is a journal for me to remember things as well as an avenue to inform others, so bear with me as I explain.

The vent has the capability to breathe a set number of times per minute without Brynn doing a thing. When Brynn does decide to breathe on her own, though, the vent can either give her a supported or unsupported breath. A supported breath means that if Brynn takes a tiny half-breath, the vent will blow enough air to fill her lungs, just as if she'd take a long, deep breath. An unsupported breath means that the vent will allow her to take in only as much air as she decides. Up to this point, Brynn has been on fully supported vent settings--and rather HIGH supported vent settings, at that (which means the vent really has to blow hard in order to keep her lungs inflated).

But last night, I'd noticed Brynn had started the weaning process. The vent was NOT supporting her when she'd breathe! I got so excited I could hardly contain myself. Our FIRST STEP FORWARD in a really long time!

In the following little video, you can see what I mean. If a peak starts with red, it means Brynn initiated the breath. If the peak starts with green or yellow (depending on which line you're watching), it means the vent initiated the breath. You'll notice the green breaths are fully supported and max out to the designated settings. But you'll also notice that some of the red breaths are short and shallow and some are long and deep depending on either how much Brynn is actually breathing or whether her breath coincides with a vent-supported breath.

The 66 number is the oxygen they're giving her (she's usually between 35-55 but she's high in this video because she always gets mad when the nurses mess with her). The 24 number (top right) that is bouncing back and forth between 15-25 is the amount of pressure the vent is using as she breaths. The vent gives her 24, she takes 15-25 depending on how strong she breathes. The 4-7 (top right) is how LOW the vent will allow her to deflate her lungs. She can't go to zero or it'd take way too much pressure to get them back open.



The last screen in the video is showing Brynn resisting the vent. Those tiny little green blips are when she's clamping down on the tube and not allowing any air in at all. You'll notice that even though the vent is supposed to give her 40 breaths per minute, she's only getting 29-31 (see the right-middle numbers) because she's refusing to let the air in. Sometimes the whole line across the screen will look almost completely flat and all the red alarms will start going off. The little stinker.

This resistance is actually common as they get bigger because they have the strength to fight the vent. Sometimes the babies desaturate really low (not enough oxygen saturation in the blood) when they do this and the nurses can't do anything to prevent it or help them. Until the babies relax and accept the vent's help, they'll literally suffocate themselves. Brynn is notorious for doing this WAY too much.

She's also notorious for lifting her head clear off the bed, turning her nose toward the matress, face planting, and kinking the tube (and subsequently desatting). Although all preemies are behind in their development compared to full term babies, the one thing they excel in is their ability to lift their heads and control their necks. Brynn, I think, is even ahead of the curve compared to other preemies in this area. One nurse, who wasn't even in charge of Brynn but had to come rushing in quite often to help, said, "THIS is the one that gets her head in all sorts of weird contortions!" It is true. Brynn really is a fighter these days--and anything she can do to let us know she's not happy with the tubes in her throat, she will try.

As soon as she gets on the CPAP (no more tubes down her throat), all this will stop--until she starts resenting the tight suction of the CPAP around her nose!

Anyway, I'm sure this is all very boring for some, but I think it's fun to record--especially since the monitors pretty much define our life in the NICU and since this is the first real move forward in a LONG time.


Natalie

Lungs and Laughs

Well, Brynn is doing . . . average. She's been diagnosed now with chronic lung disease, which likely was complicated by having both a PDA and a lung infection. The disease itself, however, is caused by the very life-saving support she needs from the ventilator. Because the vent uses positive pressure to keep the lungs open (pushing air in rather than the diaphragm pulling air in), it causes irritation, inflammation, fluid buildup, and eventually scarring in the lungs. The scarring then makes it even more difficult to open the lungs (like when you first blow up a new balloon), and Brynn becomes more dependent on the machine's positive pressure to keep her lungs from collapsing. Really, it's all a catch-22 because without the vent, her lungs would not develop the scarring and be so difficult to inflate; but without the vent, she would've died from the exhaustion of breathing on her own.

Understandably then, the doctors' main goal is to get Brynn off the ventilator, but not wear her out. Because her lungs are so full of fluid, however (due to the infection and its ability to cling to the ET tube), her oxygen needs are all over the place. Weaning her from the vent, then, will be very difficult.

They're currently trying a drug called Lasix, which will hopefully dry up her lungs and stabilize her a bit so they can wean her. If that doesn't work, however, the doctors will pretty much be forced to use steroids. This is nerve wracking itself because the steroids can really damage her brain development; but they're hoping if they only do a few days--long enough to get her onto the CPAP--and then taper them off slowly, the risks will be worth the benefits to her lungs.

It's strange being her mother and discussing drug therapies with her father. Decisions about what we will and will not allow them to use is a new kind of responsibility that neither of us have experienced before. We only hope that our decisions will be for her ultimate good and are guessing that this is only one of a million we'll have to make in our new role as parents.

Wish us luck (and wisdom).

Luckily, nearly all babies with chronic lung disease overcome it completely by age 6-8. And in the meantime, she should still be able to run and play like a regular child--just no marathons.

On a lighter note, I have to share the following story. Although I will admit that I debated about doing so because I imagine anyone between six and twelve will shift a little in their chairs and giggle with their neighbor. Since, however, I trust that few if any readers fit that age category, I will tell it.

I was nearing the end of Kangaroo time and since we'd gone a little long, I had already passed my regular pumping time. Understandably, I was very full and the hormonal change of having Brynn on my chest didn't help matters any. The kicker, though, was when Brynn decided that my nipple was a great hand rest. She cupped her little hand right around it and began moving her tiny fingers. The stimulation, of course, caused a rather forceful let down and I leaked all over her hand, down my back, and onto the chair. I was laughing when I tried to move her little hand, but no sooner had I done so than she went right back to her new favorite spot! She must have thought that being wet was a new and interesting sensation!

Natalie

Unexpected Blessings

Well, Brynn is giving us some hope that she'll be able to avoid surgery. Since the Ibuprofen clearly wasn't working after 2 days of treatment, they switched her over to a medicine called indomethacin (aka indocine)--which has some unfortunate side effects, but is much better than the trauma of surgery on her little body. Because the new meds constrict the blood vessels (thus hopefully it will constrict the PDA), it also constricts the blood flow to the gut and she isn't able to digest food. Feeding her at this stage of the game would only serve to introduce an infection in the digestive tract. So she's back to IV feedings and nutrients.

To be quite frank, the doctors didn't expect either Ibuprofen or Indomethacin to work because once the baby is two weeks old (Brynn will be three weeks old tomorrow), the chances of these drugs working is slim to none. Understandably, I had prepared myself for the idea of her having surgery.

But then the ecocardiagram results came back shockingly optimistic. At first the cardiologist thought it was completely closed because nothing was visible from her view on the machine, but then she could see a tiny leak of oxygen through the PDA passageway above the heart. When she switched views, she could see a tiny opening still there, but the shrinkage was so drastic they called off the surgery and increased the number of days Brynn would be on the Indocin. By Tuesday her regimen will be over and they will do another ecocardiogram to see if it did, in fact, completely close. We are hoping against hope that it will.

Aside from this, since I have a yeast infection and we don't want it to infect baby, Matt got to do Kangaroo Care. It was so sweet. He just kept saying, "I love my baby Brynn. I love my baby so much." What a fun time for both of us, although he worried much that his hairy chest would stick to Brynn's face! I'll post pictures soon--and perhaps a VIDEO since Matt's parents got us an early Christmas present and it is the coolest tiny video camera I've ever seen. So exciting!

Lastly I have to add--Brynn is getting FAT! She now weighs 790 grams, which is just shy of 1 lb 12 oz. Wow. Her arms are starting to look chubby and even her hands, from the wrist to the knuckles, are looking fat. It's funny that even though I see her every day, I can REALLY tell she's growing. Tomorrow evening is when they take the measurements of her head circumference and body length so we'll get to see how much bigger she actually is.

Love,
Natalie