Dark Web

First the update on the babe:
We went back to the NICU (which was a strange feeling) to check in with Phoenix's neonatologist. It was a quick and uneventful visit -- he commented on her baby fat, checked her heart (the murmur is forever gone!) and talked about her lungs/oxygen with us. We just have to keep doing what we are doing, and give Phoenix the time she needs to grow new lung tissue.

[[WARNING: The next several paragraphs are totally unrelated to the Phoenix, so feel free to skip them.]]

I recently read a book called "Under the Unpredictable Plant" (by Eugene Peterson) for the internship, and have spent a lot of time dwelling on a section describing a change in Peterson's perspective on the seemingly trivial and homogenized lives of his congregants.
He writes:
"[Reading] Dostoevsky made them appear large again, vast in their aspirations, their sins, their glories ... He trained my antennae to pick up the suppressed signals of spirituality in the denatured stock language of conversations, discovering tragic plots and comic episodes, works-in-progress all around me. I was living in a world redolent with spirituality. There were no ordinary people.
... Now when I came across dull people, I inserted them into one of the novels to see what Dostoevsky would make of them. It wasn't long before the deeper dimensions developed, the eternal hungers and thirsts -- and God."
I have been haunted by this idea ever since finishing the book. As a result, I self-diagnosed my own sick tendency to see only the immediate. People offer the world a version of themselves, Peterson suggests, and I have not been fighting deeper to see souls in all their glory. I think this is especially disturbing to me now that I have found myself to be a stay-at-home mom. I love being a mother to Phoenix, but all the heights and depths of my being are certaintly not conveyed in my "job" title.
But for some reason, I have seen people with the very eyes I fear. And I don't want to anymore. I want to learn to see the drive-through employee as a complex and magnificent soul. The grocery clerk. The trash men. Acquaintances I had previously categorized as unworthy of attention.
And I know the only way to change my habit is to create a new one -- and I'm workin' on it.

One way I am doing so?
When I get a few minutes during the day (and I am managing to stay awake), I have been reading a novel called "The Elegance of the Hedgehog." I bought it during a long day at the hospital -- I snuck away to find something new to read to help pass the time inbetween her feedings. The two main characters are women of profound depth and intelligence that intentionally hide their powerful minds and play along with other people's perceptions of them. When I read the description, it felt in-keeping with my newfound soul-seeing task.

[[Back to the baby]] ...

In the incredibly well written text of the novel, I discovered this dark sentence:
"When illness enters a home, not only does it take hold of a body; it also weaves a dark web between hearts, a web where hope is trapped."
Fortunately, hope flies free in our home despite Phoenix's continued dependence on oxygen.
But her oxygen certainly affects more than her lungs, and we could use prayer for endurance.

 Things I am tired of:
1. The baby being on oxygen.
2. The baby being hooked up to a monitor.
3. The monitor beeping loudly all day... every day.
4. The monitor beeping loudly all night. ALL NIGHT.
5. Getting tangled in the baby's cords.
6. My insulin pump getting caught on her oxygen tank.
7. Being stuck in the house because of the baby's cords.

Her cords are our "dark web," and I yearn for the day that I can change her diaper or give her a bath without being tethered to her tank. Pray that day comes sooner rather than later, and pray for Josh and I to keep from being discouraged by her continued dependence on the oxygen.

And pray that we find our camera (I think the bed ate it) so that you can see more pictures of little miss cutie boots.

Side note:
Thank you for all the encouraging notes about breastfeeding -- sister and I are going to keep at it!
The other night, in a moment of feeding frustration, I decided to change my perspective. I held her close, gave her long, snuggly kisses, and thought about the two and half weeks that I could only look at her through the plastic sides of her isolette. I would rather fight to feed her from now until eternity than relive those days of separation.
I know it will click for us one day ... until then, the two of us will continue to be tired and covered in breastmilk.

Frustrated

Girlfriend is having a rough go with breastfeeding these days, and it is sorely affecting my sanity.

She will cry with hunger, but then refuses to latch well (which I know she is capable of) and either flails around or falls asleep. Nursing her is at least a 40 min affair, after which she is often still hungry. Offering her a bottle after working to feed her for almost an hour tests the very limits of my emotional endurance, and I am beginning to assess whether all this frustration is worth it. What is supposed to create an emotional bond seems to do the opposite ... after giving her a bottle, I get to interact and snuggle with no ulterior motive. She is satiated, and I'm not disheartened.

I know cognitively that breastfeeding is the jam ... especially for preemies. It just doesn't feel so awesome these days.
But she even has rough feeds with the bottle. Josh's mom spent an hour trying to get her to finish the bottle with her medicines this morning (Josh and I were both too exhausted to even try). So maybe it's not just breastfeeding.

Moral of the story?
Eating is often a stressful event, for both the babe and me. And, since feeding time comes 'round every 3 hours or so, these are rough days in the Cash household. As a result, Phoenix has earned herself some colorful nicknames (but buckets of sweet ones too).

I so desperately want what is best for her, so we could use some prayer.

Pray that she exhibits some focus and intentionality during feeding, so that she gets enough to eat and I don't go crazy. And pray that God gives clarity on  how to best approach her feeding --I don't want to breastfeed her just because that's what you are "supposed to do," but because it is best for us. If bottle-feeding is better, I just need the all-clear from the Lord on that.

Awkward prayer requests? Maybe. But sooo appreciated!

Long Time, No Blog

My apologies for (again) failing to blog in the last week or so.

To be honest, I have two major obstacles impeding the blogging process:
1. I am freakin' tired.
2. I don't really have anything interesting to say.

Turns out, she pretty much does the same thing every day here -- eats and sleeps. That's it. But, boy, she sure is good at those two things. We get around 20 total minutes of interactive awake time per day, and we treasure it!

The only real updates on the nug:
- As of yesterday, she weighs 6lbs, 6ozs and has graduated into her newborn clothes! It's weird when people meet her and tell me how small she is. She looks like such a big girl to me and Josh!
- She got her first round of vaccines yesterday, and took the shots like a champ (she is no stranger to needles). Unfortunately, she has been a bit lackluster since then ... she refuses to stay awake long enough to nurse, so we have been bottle-feeding her to make sure she eats. Fortunately, that also means she is getting a lot of fortified milk, which translates into more weight gain!
- She has already learned to french kiss ... sort of. When she is hungry, she assumes anything that touches her face is a source of food. Josh has taken to kissing her on the lips when she is hungry, and she will open her mouth and stick her tongue out in response. Weird and gross, or super cute? You decide.

As you can see, I am overhauling the look of the blog. I have a feeling it will be an ongoing process, seeing as I am still fairly unhappy with it. But I just couldn't look at the old background anymore. Plus, the title was a misnomer. Hopefully we will only have to call it "Team Preemie" for a short while -- when she is good and healthy, I will stop categorizing her as anything other than a baby. 

I don't have a lot of time to write right now, since Josh and I are going to sneak out for a double-date while his mom is in town to watch Phoenix.  But I have some thoughts a-brewin', so watch for more updates soon!

To hold you over, here is a little video I took of her today:

Bestie in Town

My best friend flew into town last night, and I am beyond thrilled.
Other than Josh, there is no one who knows me, makes me laugh, encourages me or challenges me like her. And she came to town to love on me and my baby -- watching her hold Nixie made me even more thankful for the gift of real friendship that God gave me in her. She has already helped clean and do laundry, and make me laugh.

And I got to leave the house to drive to the airport to pick her up ... I felt so free. And somehow I managed to get lost on the easiest route of all time.

Not much is new with the nug, except she went on her first stroll tonight!
Check it:

Oh, and today was the first time she soiled her clothes and bed as well as her diaper. That's my girl.

Josh and I are both sleep deprived, and now we have a heat problem on top of our newborn. Our air conditioning is broken, so we are all currently hanging out in the basement to try and beat the heat. Even the babe seems to be annoyed by the temperature ... she has been much fussier today.
Pray that we all make it through the night, and that we can get the AC figured out tomorrow.

Here are a couple of pictures from the last day or two:

I promise Josh wears clothes sometimes

Love me some snuggles

Pretty baby lying on our bed

Tyrannosaurus hand

And thank you to the Schoeck's for a rockin' dinner tonight, and muffins for breakfast tomorrow!

I am Who You Say I Am

Sorry for the blog neglect ... turns out, having a baby around requires most of my time and all of my energy.

Not too much has happened in the last few days, except for her first trip to the pediatrician.
Here is a picture of her sleeping on the way there:

She is doing pretty well ... despite some nasty sounding congestion that turned me into panicky new mom. But we got her a cute little humidifier, and it seems to be helping clear her out.

I have never really felt so out of my element ... ever. In my life. Especially because I am doing this alongside Josh, and all of this seems to come so naturally to him. He doesn't stress or get frustrated ... he just seems made for this.
My internship at 12Stone ended just before bringing Phoenix home, so I have only just begun the process of reflecting on all that God has taught me in the last two years of ministry. But I am confident that he has used these two years to break me, something I should have anticipated (based on the testimonials of previous interns). Granted, I am pretty sure that I am the first intern to be humbled by an unexpected pregnancy. I spent so much time trying to remind God that my giftings didn't set me up well to be a mom yet ... and that there were so many other things I should do first. Pretty ballsy of me, to stand before the creator of the universe and suggest that he forgot how He made me.
It took two tumultuous years for me to stop saying, "God, this is not who I am. Let me remind you ..." and to start saying, "I am who you say I am."

I am not sure how many times I have repeated that in the past couple of days. Even feeding her, which should be pretty darn natural, has had me in tears several times, wondering if I am really cut out for this. And just when I want to question God's will in making me a parent, I choose to say "I am who you say I am. I am who you say I am. I am who you say I am." And He has said I am a mom.

Thank you so much to those of you who have brought us food in the last few days ... it has made everything much easier!

Here are a couple random pictures for ya:

I am "THAT" mom

Cutie boots!

This didn't even bother her ... so we left it

And, much to Josh's dismay, here is another video of him trying to wake up the nug (he wants me to make sure you know that he was unaware of the camera).

I know, my baby daddy is hot. Go ahead and be jealous.

2 Month Birthday

My sweet girl was born two months ago today.
In celebration, we took some pictures of her with her luck dragon, Darla, to keep track of how she grows.

This was as close as we could get for her 1 month picture:

 

7/11/11

And here are some from today -- she is laying on the beautiful quilt that we got from my sister-in-law, Sandra.

Eat that hand

Pretty Baby!

Hopefully next time we take these pictures, she won't have a cannula in her nose or a pulse oximeter on her hand. Taking these pictures was the biggest achievement of our day. That, and her first bath at home.

Dry and cuddly

Based on the videos and pictures, you would think Josh was a single dad. Don't worry ... I promise I put in my fair share of work around here.

It's been quite the day around our house ... having her here has obviously drastically changed our dynamic. She had a fairly good morning, but was having bad oxygen saturations this afternoon. Josh and I are learning quickly how to better serve and love one another, and we are choosing to be quick to extend and receive grace. I am so thankful to have such a wonderful parenting partner, not only because of his deep love for Phoenix, but because of his first devotion to me and our marriage. After sleeping very little last night, I reached a sanity breaking point this afternoon -- Josh took baby duty so that I could get a much-needed nap. Love him.

And here's a shout out to the Lebovitz's for bringing us a ballin' dinner tonight -- here is a picture of our bed picnic bounty.

 

Please never cease praying for her lungs -- having her on oxygen complicates the craziness of having a newborn for us, and sister is sick of her nasal cannula!

She's Home

I guess I either need to stop blogging, or rename the blog, because OUR BABY IS AT HOME!

Today was surprisingly smooth. We made a last minute run to Costco this morning, grabbed some lunch, picked up her last prescription and then headed to the hospital. It was time for eats when we got there, so we changed and fed her while we went over discharge information. Josh packed up the car, we signed some papers, the nurses gave her some last minute lovin', and we left.

Of course, today was the day that I left the memory card for the camera at home. So there are no pictures of us leaving the hospital, only video.

Clearly we are first time parents, because I took 4 videos in the span of 7 or 8 minutes.
For your viewing pleasure ....

It was so surreal to carry her into the house ... best. feeling. ever.

I wish I had more to say, but I am spending quality time with my two loves. As I really process her homecoming and having a full-time baby, I will write about it.

Here are a couple pictures of her AT HOME!

Tiny baby

Nappin' downstairs

Perfect dinner (eaten on the floor of our bedroom)

The Last Supper

We survived.
But I can't say it was the best night of my life, either.
It started out great ... Josh gave her a bottle, she went to bed and the two of us watched a movie together. Right before we went to sleep, I fed her and she ate like I have never seen her eat before. Sister still has some pretty serious reflux issues, so I think that kept her awake and fussing. And she kept pulling out her oxygen cannula. So in-between her first and second feeding, I think I probably slept for half an hour ... maybe. That dang monitor just kept going off.
Then when it was time to feed her again, she just wouldn't wake up. Most babies wake themselves up and cry when they are hungry, but we have to make sure she is eating at least every three hours so that she gains weight.
Here is a video of Josh trying to wake her up in the middle of the morning yesterday, which should give you a good feel of how frustrating it was to be up at 3 am trying to get her to eat.

Long story short? We left the hospital looking like hot messes ... Josh was still wearing his clothes from the previous day. But we were also told that rooming-in is always harder than actually being at home. I think it is just going to take me and her some time to establish a good feeding relationship.
But she sure is cute, eh?

Update on the girl:
- She sort of passed her car seat test -- there was no apnea, but they had to double her oxygen flow while sitting in the seat. As far as we know, we are still good to take her home tomorrow ... we will just have to hook sister up with lots of oxygen.

I think we have everything ready at home. We drove to literally 7 different stores before finding her vitamins, and endured a lot of confusion in getting her prescriptions filled (we ended up getting them filled at two different pharmacies). A portable oxygen tank got delivered to the hospital yesterday, and they delivered the big tank to our house today.The bad news? Her oxygen tubing is 7 feet long. Which means I will be living within 7 feet of her oxygen tank for a good portion of the coming weeks. Pray for my sanity.
So we moved some of her stuff into our room, including her changing table, since it will be easier to have her near us for awhile.

Here is a picture of our baby-ready room (Josh is sleeping next to me while I'm blogging, thus he is also sleeping in this picture):

 So tonight we went out for our last real date that we are going to have in a while -- and it was awesome!
In the car on the way home, I said to Josh "I'm glad you're mine"
His reply? "I'm glad I'm yours ... I wouldn't have it any other way"
Best husband ever. Or so I thought -- he is currently singing in a really high-pitched voice just to bother me.

Last bit of good news? A friend of Josh's sister mowed our lawn for us! Yay! Our house actually looks decent now!

Thanks Todd!

Can't wait to post pictures of us leaving the hospital tomorrow!

Sleepover

Quick update:
- The nugget passed her newborn hearing test today -- yay!
- She had another eye exam, and her retinas are ALMOST mature (not a big deal, since we are still 2.5 weeks before her due date). We will probably only have to have one follow-up with the pediatric opthamologist in 3 weeks to make sure they finish maturing.
- The cardiologist came today to make sure her PDA is totally closed ... no word on that yet, but we will keep you updated.

Josh and I are currently settling into our room just off the NICU, as we are rooming-in tonight.
Please pray that we don't kill our nurse ... she has never had Phoenix ever before (not sure why they decided to do that), but she treats us like we are totally incompetent. She stood over me while I changed the diaper, micromanaged Josh while he fed her a bottle, etc.
So, here we go. Trial run at full-time parenting.

Here are some pictures of our set-up:

Our room for the night

Time for eats

This thing is going to steal my sanity in the coming days

 

 

Daddy's girl

Will let you know tomorrow how we survived!

XOXO

Getting Everything Ready

Hey Team!

We are trying to finish up the last-minute things that need to get done before the nugget comes home, while simultaneously trying to spend as much time at the hospital as possible.

Here are some pictures of the nursery, now that the curtain is finally up!
(Sorry they are blurry ... not sure what was going on with the camera)

All it needs now is a baby!

Awesome crib from Josh's parents

Changing station

But we still need a lot of help in the coming days, especially with meals. If our time with her today was any indication of what a baby at home is like, then we are going to have our hands full just trying to get her to eat, let alone find something for us to eat.
If you have culinary skills (or even if you don't ... we are beggars at this point, not choosers), please help us out by bringing a meal in the coming weeks.
You can sign up by clicking on this link: MEAL TRAIN
We will bribe you with a peek at the baby ... but please don't expect to hold her quite yet. We are still trying to make sure that she stays away from germs, and that she conserves as much energy as possible (that conserves calories, which means weight gain).

And our other major need?
The outside of our house has gone to hell. Seriously.
Look at what happened to the ONE plant that I tried to grow this summer:

We don't own a lawn mower, and haven't been proactive at all in taking care of our yard. We would greatly appreciate some help in this arena, just so our new neighbors don't come to hate us during these crazy-with-a-preemie months.
And if you are selling a lawn mower for cheap, holla at us.

Thank you guys for helping us through this way-too-long season ... we wouldn't have made it this far without you!

Can't Wait!

Josh and I are both so tired at this point that neither of us heard our alarms this morning. Instead of trying to fight our morning laziness, we enjoyed some time hanging in bed together watching "So You Think You Can Dance" on Hulu. Before you judge me, watch this dance about breakfast lovin' and then tell me the show isn't awesome:

That's what I thought.

When we finally got our lives together, we went to visit the babe.
After spending the last two months in the same NICU cubicle, sister graduated to her own room today! Meaning we can shut the door when I nurse or pump, and we get to just live life with her like we are at home.

We had a good afternoon with her, despite some feeding hiccups. I think the next couple days are just going to be rough, since we are living in the tension of still being in the NICU but transitioning her to the house. Pray that this is as smooth as possible for everyone involved ... especially Phoenix!

Here is the timeline:
- Sometime before Wednesday: Car Seat Test (but the seat is there, so they can do it whenever)
- Tomorrow (Saturday): 8 week birthday!
- Monday: Eye Exam
- Tuesday: Josh and I get trained for her oxygen, and they deliver a tank to our house
- Wednesday: Discharge!

As our NICU stay is drawing to a close, I have taken it upon myself to document the everyday intricacies of this season. So, enjoy this way-too-long video of our daily walk into the hospital. Sorry it as all Blair-Witchy ... hopefully it just makes you feel like you are there!

And here is a video of Josh taking Nixie's temperature. Poor girl gets regularly woken up by someone sticking a thermometer all up in her armpit ... no wonder she gets angry.

And, in case there has not been enough tantalizing media for you in this post, here are some random pictures from the last few days.

Gasin' up on the way to Six Flags

Cute little bee jammies

Mommy and her nug

 

Bright-eyed bottle feeder

Keep praying for her lungs ... we would love for her to get off oxygen as quickly as possible!
Love you all!

Light at the End of the Tunnel

The doctor told me today that my girl is coming home in ONE WEEK!

But there is this very real part of my subconscious that is raining on my baby's homecoming parade ... what if it doesn't happen? Her healing has certainly not gone according to plan, so why get excited about a date if it might just get changed. I allowed this train of thought for a while ... indulged my pessimism by calling it "realistic."
Well, screw that. At the end of the day, I would much rather hang my hat on hope. I am not talking about a flighty, faithless kind of hope, but the bold and virtuous breed. I put my hope in God and in his Word, and I know that He has a wild, intricate and boundless love for my girl. And that doesn't change, no matter how long she is in the NICU.
So I am allowing myself to champion hope ... and to let the goofy grin spread across my face.

In the next week, here is what needs to happen:
- She has to pass her hearing test and her carseat test (she has to sit in her carseat for an hour without any apnea), and she will have another eye exam
- Josh and I will meet with the home oxygen people, and get trained on how to make sure sister is getting her good air
- We will need to learn how to give her medicines and vitamins
- We will room-in (probably Monday night) as a trial run at being real, full-time parents. That way we can survive our first night with the security blanket of nearby NICU nurses.

Get pumped, people. God is good, our girl is cute, and we are thrilled.

Ugh.

First, the good news:
- Josh and I had a stellar babymoon yesterday. Granted, it was much shorter and much less tropical than the one we had originally planned for late June. But we rode some awesome roller coasters, Josh ate a turkey leg, I pumped in the car in the parking lot (oh the things we do for the babe), we sweated buckets, Josh got heat rash, we had a lot of quality time to talk and people-watch, and just generally enjoyed each other. After coming home and taking much-needed showers, we exchanged a couple baby gifts at the mall and then went for dinner PF Changs.
News of our escapade traveled fast among the NICU nurses and they were all jealous, and everyone commended us on taking time away together.
- The nug is no longer on zantac (her reflux medicine), meaning she is now only receiving oxygen and a diuretic.
- I gave her a bottle today (the nurse forgot that I wanted to breastfeed), and sister ate like 50 cc's. That's a lot. She is really starting to chunk up ... in fact, her chin has kind of disappeared into her flabby little neck. Love it.

The bad news:
- My baby is still in the freakin' NICU. You would think I would be over that by now, but I guess not.
- She got another chest x-ray, and her lungs look worse. Dr. Narayan said that a lot of babies get worse before they get better, and apparently sister is one of them. But he said that she will definitely be on oxygen longer that we originally thought ... like 2 to 3 months. Needless to say, that was hard news to take. So if you see me in the grocery store in 2 months, I will be carting (1) my purse (2) a diaper bag (3) a carseat with a baby in it (4) an oxygen tank and (5) a portable monitor. That should do wonders for my postpartum pudge, though.
- Expected take-home-date is still "two weeks." I think they just say "two weeks" for kicks at this point ... we have been hearing that for way too long. I asked the doctor what we are waiting for, since I was under the impression that she just needed to be able to breast/bottle feed 100% of the time (which she is quite capable of managing). He said that we need to get set-up with home oxygen, learn how to give her medicines, and then learn general baby care. Seeing as we have been doing general baby care for weeks, and we are watching those awesome videos, I asked why the process would take so long. I don't think he was expecting push-back from me, since we have been very compliant parents. He conceded that it may not be two whole weeks, and said that he would try and get her discharged before he goes out of town on the 11th.
Pray, pray PRAY that we would get to bring her home ASAP! I think being in the hospital is only stunting her healing at this point ... they aren't doing anything for her there that we can't do at home. And there is a whole lot of love, affection, music, attention and snuggles waiting for her at home.

I decided that as a not-so-subversive message to her healthcare team, I am bringing her carseat in and leaving it at her bedside. It will hopefully serve as a constant reminder to help us get her home!