Christmas and Lots of Brynn-Style Smiles

Merry Christmas everyone. Although I'm a few days late with my Holiday wishes, I'm right on time wishing Brynn a happy two-month birthday today. Crazy how time flies!

Anyway, our Christmas Dinner was a lot of fun. We included the LDS Missionaries along with Cameron and Lori McDonald. Lori and I are not pictured.

Look at all that good grub! You'd never know we forfeited the plane tickets for our family food festivities!

We carried on the Baum (Natalie's family) tradition of big stockings. Can you guess what's in Brynn's stocking (middle)?

Okay, so our Christmas Tree is kind of modest, but the presents were great! Matt's favorite gift was a game called Power Grid, where each player basically builds an entire power generation network, managing the economics of supply vs demand and cost of resources. Call him a nerd, but it's the perfect game for his brilliant economics/engineering mind. I'm actually excited to play it with him since it's kind of like Settlers of Catan (my favorite game). As for me, Matt got me a date to see the Nutcracker for my Christmas surprise!

The night of our date to the Nutcracker, I decided to get Brynn dressed up, too--even though she couldn't join us. The shirt says "This is my little black dress" and she is sporting her new outfit, as well as her double chin, in true baby style--asleep:

Daddy and Brynn having some bonding time:


Brynn looking at Daddy with her big eyes (her shirt says "hug me, hold me, kiss me"):

Brynn's best smile is hard to catch on camera, but here are a few. Do you think she has dimples? It might be the cheek wrinkling up next to the sticker on her face, but I think it's dimples:



Well, as you can see from the photos, Brynn is doing really well. She seems quite happy with her life and is obviously unaware that she's "abormal" in comparison with other kids. Shhh, don't tell her.

Overall she's finally out of the woods, but as one last minor dilemma she has been diagnosed with ROP (Retinopathy of Prematurity) which we hope is our last surprise. Basically, all that means is that due to her prematurity, she will eventually be blind if the doctors don't do something about it. To avoid the blindness, they plan to do an injection of a new, relatively-untested drug called Avastin. Without getting technical and boring, this drug blocks the eye from growing a bunch of crazy, messy blood vessels that will ultimately scar, contract, and cause the retina to detach. She is scheduled for her shot on Monday.

Although it's always a little nerve-wracking to feel like she is a guinea pig for a new drug, we are hoping that the outcome will be better than the current standard procedure of laser surgery. The laser surgery would have destroyed much of her peripheral as well as night vision, but Avastin supposedly has no long-term side effects.

Other than that, she's just gaining weight (is exactly 3 lbs as of last night), smiling a lot, improving in her breastfeeding skills, and making Matt and I love her more each day. I keep calling her a "cute toot," (a phrase I think I got from my grandmother), but Matt insists we find a different nickname for her. But hey, if the doctors are right about the cause of her smiles, the nickname just might fit!


Love you all,
Natalie

Fun Flood of Firsts

Wow. Where to begin? It seems as if Brynn is making exponential headway. I swear, every day I come to the hospital, she has reached another milestone. What a fun week this has been! The following are her milestones (in no particular order):

She's been off the CPAP since Wednesday, December 17th, and seems like she might be able to stay off. She still struggles a little and is on pretty high flow and oxygen settings for her cannula (so she may have to go back to the CPAP eventually), but the doctors are giving her as much time as she can to practice breathing and strengthen her diaphragm. The great thing about the cannula, too, is that she gets an NG tube (nasal-gastric) instead of an OG tube (oral-gastric). Basically, it means she gets fed through her nose instead of her mouth. Here's a photo of her cute face with less paraphernalia on it:

In addition to this, she started learning to keep her own temperature. Where they used to stick a probe to her skin and the isolette would raise and lower its temperature based on how warm or cold she was, now they programmed the isolette to remain a constant temperature and she has to keep herself regulated. Although she's not quite ready for a crib since the isolette is still a warm, cozy environment, it's a step in the right direction. And might I add, it's a rather advanced step in the right direction, too. Most babies don't start keeping their own temperature until they weigh a little more (around 1500 grams), but Brynn began the process at only 1171 grams (2 lbs, 9 oz)! And the best part is that since she no longer needs the probe, I got to dress her for the first time! Here she is, giving a gangsta "what's up?"

I also got to hold her like a "real" baby for the first time:

As if all those milestones weren't enough, I also got give her her very first tub bath. Here, she seems totally shocked at this new sensation. And although from her face, you might think the water is cold, I promise it's not:

I also couldn't resist posting this photo progression. The nurse showed me how to wash her eyes and this was Brynn's reaction.

Before the wipe:

During the wipe:

And after the wipe:

Also, one last note--if you look in the background of the tub pictures, you'll see the temperature her isolette is set to--28.3 Celsius. It used to be at 33-36. When she gets to 27 degrees, that's equivalent to room air and she'll get to move to an open crib!

My funny girl is so entertaining to watch. I swear she smiles all the time! I hear from some of the doctors that if a baby smiles, it's just gas. But most of the nurses seem convinced that babies know when they're happy and are able to express it. I'm not sure who to believe, but I would venture to guess from my observations that Brynn knows when she's happy. When I come into the room for the first time on any given day and begin speaking to the nurses, I will watch Brynn and she will smile when she hears my voice. She also smiles when I hold her. And yesterday, when I let her do a little suckling at the breast, she grinned between sucks. It made for poor latch practice, but it made Mommy happy :) I used to think she was just pulling the corners of her mouth up and didn't really understand that she was smiling; but now as she does it more and more, even her eyes smile. And what's even cuter, I think she's getting dimples! I'll try to get a good picture because I can't tell if they're really dimples or if the stickers on her face are forcing an indentation on her face when she smiles.

Anyway, I'm convinced that if I am wrong about her being able to express happiness and contentment, and if the doctors are right, she must have an inordinate amount of gas! Here she is smiling in the tiniest onesie I have:

Lastly, now that she's stable enough to deal with more handling, it's no longer required that we coincide the Kangaroo (or holding with clothes on) with the nurse's regular assessment schedule. In other words, we can hold her almost any time we want to!

Excited,
Natalie

Being Mommy Little Bits at a Time

I can't wipe the smile off my face today. It's as if I'm getting to do mom things in little bite-size moments at a time. First, I had a baby; soon after, I got to touch her; a few days later I got to change her diaper; a week or so later I got to hold her; several weeks after that I got to hear her cry (and feel like a mama bear); and today, I got to try nursing! Okay, so she didn't exactly eat much--but she sucked and that's a pretty exciting start!

I got the crazy idea to ask the nurse if we could try it when, for the first time, Brynn actually showed real interest in the pacifier. Matt got a video of her sucking on it. Call me crazy, but I get excited about little things like this:



I barely had the courage to ask if she could try suckling me during Kangaroo time since most nurses wouldn't have let me. Thank heaven I had the lenient, cooperative Carolyn today!

Oh it was such a wonderful moment with my baby. Granted, my nipple is bigger than her entire mouth and she really had to open wide just to get most of it in (I just couldn't help but laugh at the mental image of all the little lactation ladies reeling in horror at the less-than-stellar latch). But she was still the happiest and most content I have ever seen her--even when compared to our best Kangaroo times. In fact, the only two times she cried or squirmed were first, when I pulled my breast away thinking she was done (she was quick to let me know she wasn't); and second, when the CPAP head gear accidentally slipped down onto her eyes. As soon as I fixed her two complaints, she went right back to being the happiest baby in the world, all cuddled on Mommy. I was filled to the brim with excitement just to see her so content. Quite a contrast to a few days ago, eh?

Also, while I'm telling good news, Brynn hit 32 weeks yesterday. That is a significant statistical milestone for preemies and consequently when a lot of nurses take a sigh of relief. A lot of risks for new, major problems go down by the time they get to that age. In addition, she's not nearly so sensitive to lights, sounds, and touch. And--my personal favorite--she's better able to handle longer, more frequent Kangaroo times (we're up to about 2.5 hours now and are allowed to hold twice a day).

Oh how I love my little girl. I'm so proud of her for fighting so hard to get to this point.

She still fights the CPAP sometimes, but she's tolerating it much better now that she's gotten used to it. Here she is, using her Superwoman strength to show her still-frequent displeasure:



She used to do this trick while she was on the vent and it sent all the nurses running in to save her. She could have extubated herself several times and we're lucky the CPAP is more forgiving of her high-energy antics. It took me weeks to get her doing this on film.

I wish I'd had my video camera ready again when she later demonstrated even more strength, though. From her belly position, she literally lifted both legs from the hip down, clearing the 2-inch bed rim, AND lifted her head at the same time. She looked just like a ballet dancer when a guy lifts the woman, holding only her hips--just a little less graceful. One nurse teased her about doing Yoga and the other nurse, new on the shift, said she'd not seen very many kids as squirmy and strong as she is. I think Matt and I are going to have our hands full as she gets older!

And although the Dexamethasone, the steroid they decided to use, isn't the reason for her freakish strength (since they only really affect lung, brain, and immune system processes), it is the reason she is doing better on the CPAP. Even still, her forehead is getting red and scaly from the pressure on her sensitive skin, so the doctor is hoping to get her on the high-flow nasal cannula by tomorrow or Thursday.

I'm being careful not to hold my breath in anticipation, though. Sure, I want to be positive, but I also want to avoid setting myself up for disappointment. It's quite common that when the last dose of the steroid wears off, she might take a few steps backward.

Just cross your fingers . . .

Anyway, that's pretty much the wrap. I'm just happy to have been allowed to bite off another nibble of motherhood today--and Brynn was equally happy for her nibble of babyhood, too!


Til next time,
Natalie

Finally off the Vent!

I've written this post several times, trying to express what I want to express--but it's been difficult. This week has been bitter sweet. The sweet news is that Brynn finally moved off the ventilator. The bitter news is that I had no idea what a long, awful ordeal it would be and how difficult it would be for me to watch my daughter go through it. However, I guess the other good news is, I’m learning a lot of life’s important parenting lessons.

To make a long, frustrating story a little shorter, Brynn has gone from the vent, to the CPAP, to the BiPAP, to the high-flow nasal cannula, back to the BiPAP, and again back to the CPAP. Each of these different breathing machines offers a different kind of support and all the switching back and forth was the doctors’ best effort at keeping her off the vent.

Because the mask for the CPAP an BiPAP (same machine, different settings) has to be really tight in order to keep a good seal for the air, the staff regularly changes out the actual point of entry for the air from the mask to the prongs. This way, her sensitive skin gets a break from having the same pressure points that would otherwise become very raw. This first photo shows the nasal prongs (and her tiny binky):

And this photo shows the mask:

Here, you can see that Brynn is not too sure about this new thing on her nose:

Here's Brynn holding Daddy's finger for comfort on her first traumatic day with the CPAP/BiPAP:


This photo shows the high-flow nasal cannula and the IV in her head for antibiotics. Don't worry, the IV's not as painful as it looks and she was actually VERY happy on the cannula:

Gratefully, as of the time of writing this blog entry, she’s at least remained on the CPAP (even though she cooperated better with the cannula, it didn't give her quite enough support). Even with the extra support of the CPAP, though, she’s still really on the fence. Her lungs continue to fill with fluid and the doctors are confused as to why. So far, we can only guess that it has to do with one or more of the following factors: one, she has contracted a new case of pneumonia, which is creating a lot of mucus in her lungs; two, she still has the PDA, and although it’s small, PDAs are notorious for distrupting the flow of blood and filling the lungs with fluid; and three, she’s been on the vent for over 6 weeks and she simply has bad lung disease.

Unfortunately, in order to treat her, the doctors need to know which factors, or combination of factors, are causing the problem. But the only way they can know for sure is through the process of elimination. And since each treatment comes with rather large negative side effects, they’re nervous to just guess and cause further trauma for no reason at all. The PDA will require surgery, which can (obviously) increase the risk for new infections, cause major setbacks, and require her to be on the vent even longer. But the lung disease will require steroids, which may cause long-term brain damage, and will certainly suppress her immune system and make her pneumonia more dangerous.

Since the side effects of the surgery are more extensive and worrisome than the side effects of the steroids, they decided to rule out the lung disease as the first contributing factor. After starting the steroids on Saturday morning, her lung X-ray looked better so we’re encouraged that we might be on the right track.

That sign of hope, plus the fact that today marks 4 days since she’s been off the vent (3.75 days longer than I thought she’d last) makes us feel like among all this confusion, we’re still getting good news.

However, aside from all the ups and downs, this week has mostly been hard on me as I learn to be a parent. Let’s just say Brynn's first day off the vent was not pleasant. I will not attempt to describe how much she hated the CPAP and BiPAP—not only because I really don’t care to remember it (as if I had a choice), but also because there’s no point in creating such an awful visual for the rest of you. It will suffice to say that she was the most miserable, angry, uncomfortable, and inconsolable I have ever seen her. Breathing was even harder for her than during her very first week of life.

Because nothing the nurse could do was helping Brynn to settle down, she thought perhaps a Kangaroo hold would ease my little one into sleep. I eagerly obliged, but again, was totally unprepared for the emotions that would come.

When Brynn cried on my chest for the first time in her sad, hoarse little voice (I haven’t heard her voice for six weeks since the vent tube obstructed & damaged her vocal chords), I was flooded with the feeling that she was actually a real baby and I was actually a real mother—complete with the overwhelming realization of what that responsibility entailed.

Not only that, but I also felt flooded with the instinct of a mama bear. I think if I’d had any less self-control, I would have tucked her in one arm, barreled out of the NICU on the other three limbs, and foamed at the mouth toward anyone who tried to stop us. I wanted so badly to rescue her from her frustration and became equally frustrated, myself, that I couldn’t.

I suppose that’s when the lesson came, though. Well, not in that very moment since it took me a while to process all my emotions; but it definitely came after I had some time to reflect.

I know God is our Father. I know we are His children. I know He lets us suffer so we can fulfill our greatest potential.

But I never, never, never realized how hard it must be for Him to watch us struggle. Whereas I didn’t have any power at all to rescue Brynn, God does have the power to rescue us anytime He wants. And you can bet that if I’d shared His capabilities, I would have done anything in the world to take Brynn’s pain away, even though I know her struggles are a necessary step in her graduation from the NICU. It baffles me that God has the strength to refrain from using His power to save us—or to refrain from forcing us to do something He knows is good for us. He really must love the greater good even more than He loves us.

I’m grateful He does let me struggle so I can become stronger; but I only hope I have the strength to be an effective parent for Brynn like He is for me--especially when I do have the power to help her but shouldn't.


Natalie

Progress Photos

Brynn is doing great! She's (slowly) being weaned from the vent. Without getting technical again, she's gone from 40 supported breaths/minute with her own breaths being fully supported to only 30 supported breaths/minute with her own breaths unsupported in less than a week. That's a pretty big leap as far as I'm concerned--and to do it without any steroids is even better.

Not much else is new, except that I think I grow to love her more each day. Sometimes I think I'm going to burst I love her so much. I can't believe how big she's getting! She's already 2 lbs 6 oz--only two ounces away from being double her birth weight. Even though I'm here every day, it seems like I can actually SEE her expanding. I swear she gets fatter by the minute.

Well, it's been a while since I posted photos, so here's a bunch.

This is the first time I've ever seen Brynn suck her thumb. She's always trying, but the tube makes it difficult for her to get her fingers in her mouth:

After putting her hat on, the nurses thought she should be an Anne Geddes model baby. The hat drowns her, but its so cute! One of the nurses' moms makes a lot of these hats and the rest come from cute grandmas in a nursing home who knit them as a service to the NICU:

Here's another cute hat. Kelly (the nurse whose mom makes the hats) brought this one in especially for Brynn. Doesn't she look festive? (You can also see she's trying desperately to get her fingers in her mouth again):
Success! Got a few fingers in!

Oh yes, and since she isn't as critical as she used to be, Brynn graduated to a "big girl" isolette. This one is much smaller and doesn't have as many trinkets attached. I was going to say not as many bells and whistles attached, but alas, she still has enough of those to drive anyone crazy. You can't be in her room 5 minutes without an alarm going off--maybe several times.

Here our feisty little girl is not happy about her bath (a.k.a. 15-second wipe down):
Look at all that hair! My goodness is she getting big . . . Love ya!
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