Ten Four Good Buddy

Medical Update:
- Oh wait ... nothing is new.

She is still chuggin' along with her feedings, and still requiring the same amount of oxygen.

Josh and I are incredibly well versed in the basics of infant feeding after watching an extremely infomative video tonight.
We learned:
- If your baby is not breathing, ask loudly "ARE YOU OK?" -- But don't bother to wait for a response. It doesn't actually talk.
- That two ounces of water makes two ounces of formula.
- How to wash a bottle (it is much more complicated than regular dishes ... NOT).
- How to take the lid off of a can of formula powder.
It was pretty much an exercise in self-control ... both of us wanted to claw our eyes out. So did Phoenix ... but she is pretty much always scratching at her eyelids.
I just have to keep reminding myself that she is freakin' awesome and totally worth it.

In other news, church was phenomenal this morning ... especially worship. Honestly, the worship part of Sunday mornings has been hard for me ever since Phoenix was born. When she was still cookin' inside of me, she would always respond to the sound/feel of the worship music in her own little praise dance. And I miss it. But the set this morning was awesome -- and I count it no small thing that Josh's favorite song and my current favorite both made the cut. Especially because both of us needed an extra helping of Jesus today.

Tbe words to "Saviour King," Josh's favorite:

And now the weak say I have strength
By the spirit of power that raised Christ from the dead
And now the poor stand and confess
That my portion is Him and I'm more than blessed

Let now our hearts burn with a flame
A fire consuming all for your Son's holy name
And with the heavens we declare
You are our king

We love you Lord, we worship you
You are our God, you alone are good

You asked your Son to carry this
The heavy cross our weight of sin

I love you Lord, I worship you
Hope which was lost, now stands renewed
I give my life to honor this
The love of Christ, the savior king

Let now your church shine as the bride
That you soar in your heart as you offered up your life
Let now the lost be welcomed home
By the saved and redeemed those adopted as your own

I give my life to honor this
The love of Christ, the savior king

I have said this before, and I will say it again and again: I love my husband's worship heart.  I think the lyrics to this song say something profound about his relationship to Christ. He recognizes his weakness and need for redemption, and responds by submitting himself to the lordship of Christ. And the the line in bold is especially pertinant for his heart these days .. pray for him to continue to hope in the Lord, and to see with fresh eyes the ways in which He is healing Phoenix.

The words to "You Are My Passion," a current favorite of mine:

I’m alive to bring glory to You, King
God of victory, You are my passion
It’s in the way You are, You don’t change at all
Great and humble God, You are my passion

My strength in life is I am Yours
My soul delights because I am Yours

Your will on earth is all I’m living for

Jesus, I glorify; Jesus, my love is Yours
You are my heart’s desire; I live to know You more

Light that breaks the darkness, showing what true love is
Always full of goodness, You are my passion
You never do me wrong, the meekest Man, but strong
The most perfect song, You are my passion

I know that I have written about this song before, because I keep discovering new and relevant truths hidden in its lines. When I found out I was pregnant on Christmas eve, the line "You don't change at all" blew my mind ... knowing the way that Mary responded to her oh-so-unplanned pregnancy inspired me to trust God and his purposes. This song was also one of two that made it onto my birthing playlist (thought I had another 3 months to work on that) -- the playlist was entitled "Get this thing out of me." I knew the anthem about trusting in the Lord's strength would be vital to surviving the natural birth I had planned on. I didn't dwell much on the days that would follow her birth ... I guess because I had no idea it would be so hard. But standing before God this morning, proclaiming my weakness and His strength was like fresh air to my stale soul. Pray for me, and that I would continue to surrendur to my weakness and dwell in His power.

And pray for my girl and her tiny lungs ... I so want to see God glorified through a miracle in her body!

Last, but certainly not least: Josh and I are taking a one-day babymoon tomorrow. To Six Flags. We really need to just get away and do something fun together. So we are. Josh's love of roller coasters is just further confirmation that I married the right man.

Over and Out.

Closer and Closer

Medical Update:
- In case you didn't see the post on my Facebook yesterday, Phoenix got her feeding tube taken out! She was doing so well with her PO feedings that they decided to let her set the pace -- and turns out sister can eat really well. I actually heard one of the nurses tell Dr. Narayan that she has never seen a preemie nurse so well -- VICTORY! (In the pictures of her and Josh below, note the lack of orange tube in her mouth)
- Even with this big step, we still don't have a set take-home date. But we are gradually moving in that direction -- the hospital social worker came to introduce herself to me (since she will be helping us get set up with home oxygen) and tonight we are going to watch dvd's on infant CPR and baby care. Pray that Josh and I have extra patience in the coming days ... having the end in sight makes every day feel sooo long.

Last night, me and the nug had our first fight --- granted, she didn't know it. And I got frustrated with her for something so obviously out of her control. At her 5 pm feeding, she ate really well and then showed all her typical signs that she was full. So I stopped nursing her, and just let her snuggle on my chest. But about 20 min later, she started relentlessly scootching towards the food, so I let her nurse again for another 10 minutes. It really feels like I am starting to understand her subtle little cues, because she doesn't really cry (as Josh pointed out, she doesn't have to -- she gets regularly woken up for clean diapers and food). But then, when it came time for her 8 pm feeding, she was very distracted by all the effort it takes to fill one's diaper (another victory!). But her stupid schedule made me frustrated with her ... this was her chance to eat, and she just wouldn't focus. Even when she was done pooping, she still only nursed for a couple minutes before she became totally disinterested. Sister just wasn't hungry, since her last feeding had gone so long/late, but I felt all this pressure to make sure she ate well at exactly 8 pm. It took me a couple minutes of tears to realize that I wasn't mad at her ... I am just mad that we are trying to grow this organic relationship in the middle of a rigid environment. I cannot wait to get her home! I know that having her out of the NICU will be hard in its own way, but at least it will be normal new parent/new baby hard.

So, like I said ... pray for patience! And I am straight up exhausted -- from being at the hospital all the time, and then waking up every couple hours to pump in the middle of the night. I have been doing this not-more-than-two-hours-of-consecutive-sleep thing for seven weeks now, and it has certainly taken it's toll. And waking up in the middle of the night won't change when she comes home. So please, please, PLEASE pray for energy for Josh and me. We are both having to constantly fight the urge to be cranky pants.

Now, what you all have been waiting for ... pictures of Nixie from that last couple days!

Cute jammies from Lia!

Pretty Bird

Close-up

Look at the way Josh looks at her -- this picture kills me

Daddy Kisses

Nug lookin' at the camera

Josh being Josh

Side note: Our baby is going to have no idea what her real name is -- I never call her Phoenix, or even Nixie. Here is an assortment of her nicknames:
- Nugget
- The nug
- Nug Bug
- Pretty Bird
- Pretty Girl
- Bitty Bear
- Bitty
- Bitty Boo
- Boo Boo
That is potentially confusing for her -- good thing she is showing signs of being a pretty smart little babe.

Body of Christ

Medical Update:

- The nug just got cleared to do either bottle or breast for 2 out of 3 feedings ... this is a huge step towards her coming home! I did spirit fingers in the NICU when they told me.

- She has started this new thing where she won't poop without a suppository. This needs to end ... now. So we are praying for sister to deuce it up.

- She has pretty much plateaued with her oxygen. Pray that she will get weaned down!

Oh, and Josh wants you to stop asking how the baby is -- it feels to him like a reminder that his baby is in the hospital. If you read this blog, then you know everything there is to know. (You are still more than welcome to ask me).

"Just as a body, though one, has many parts, but all its many parts form one body, so it is with Christ. For we were all baptized by one Spirit so as to form one body—whether Jews or Gentiles, slave or free—and we were all given the one Spirit to drink. Even so the body is not made up of one part but of many ...

  The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.

 Now you are the body of Christ, and each one of you is a part of it." 
Selections of Corinthians 12, emphasis added

I can't even begin to explain everything I am learning about the beauty of the this passage and the way that it plays out. The body of Christ -- both near and far -- has embraced us, cared for us, and lifted us up beyond our wildest dreams. I can't even begin to count the number of people who have prayed for us and our girl. We get little gifts in the mail from people who want to bless us; nevermind the fact that they barely know us. People have given us food, gas, clothes, a clean house -- everytime I turn around I am moved to tears by the way that people are pouring the generous love of Christ on us! 

For example, I recieved this message on facebook a couple of days ago [FYI -- 12Stone Village is the preschool ministry at our church]:

Hi Emily,
I'm sure the past few weeks have been quite emotional for you. I just wanted to give you an update on something that 12Stone Villagers have been working on this week.
The two of us collecting met you a couple of weeks ago before the 1pm service with Lauren Wilkins. It is amazing to me how God can just show us things we need to do. The two of us had been reading your blog but to see you kind of brought it full circle with us.
Today at 12Stone Village we had a little collection called "it takes a village" (original - right?). We have collected quite a bit of money, a small scale to weigh your precious one when she is home and some clothes, cards, and prayers. I am in awe of the generosity of those at our church. It is truly inspiring and I honestly believe that people want to do good things, but also want something close to home. Your little family is PERFECT!!

God is good and he continues to show that in more ways than I can count. Thank you for letting us be a part of your family's life and for letting us help. I truly believe God brings people in our lives and as PK said in one service, You can't help everyone, but you can help the ones you come in contact with. Thank you again for letting us share your happy times and for sharing your emotions with us no matter how up or down they may be. You and Josh are amazing and we can not wait to have Nixie running the halls at 12Stone!

Can you believe that? Awesome, eh?

God has been faithful to meet my needs before I even speak them ... even for things as small as coffee. 

It has been such a humbling season for me. Just ask my parents ... "I do it myself" were pretty much the first words out of my mouth. I don't think independence is a bad thing, but I know that I have worn my self-reliance as a crown on my head, thus fostering an extremely toxic breed of pride. My two years in Georgia have just been one long, hard lesson on how little I can accomplish on my own. God has broken me to remind me that I need him and forced me to see the beauty in allowing others to care for me when I cannot care for myself. 

Thank you so much for the way that you have all been involved in this strange season of our lives ... we really feel blessed by the way that everyone has carried our burden with us! 

A Story for My Girl

Here is the medical update on "the nug," as I call her.
- She had another eye exam this morning, and she was apparently extremely cooperative. Her retinas are still immature (which is normal, seeing as she is undercooked), but the blood vessels almost reach the very edges of her retinas. Translation? For a preemie, she has awesome eyes -- and the opthamologist isn't the slightest bit worried about her.
- She is getting her last dose of caffeine tonight. Pray that sister does well without it, and that she doesn't have any increased apnea.

I have been thinking a lot about how much I wish that I could give her the things that are healing and life-giving to me. When I am sad or struggling or sick, there are some things that never cease to ease my pain.

Naps.
A hug from Josh.
Sunshine on my shoulders.
A really good book.
A song that makes me dance.
Coloring.
The smell of rain.
Some ice cream or a smoothie ... or a slurpie.
A hot shower.

Unfortunately, her predicament disqualifies her from most of those pleasures (except for naps and Josh hugs ... both of which have indubitably contributed to her progress). I can't bring rain into the NICU or force-feed her a smoothie, but I decided that I can read her a book.
Now, which book? For those of you who know me well, you understand that this was no flippant decision. Words are my love language ... I don't have much to offer Phoenix, but I wanted to gift her a story that has greatly impacted my own life.
A dear friend and mentor, Elizabeth Varaso, introduced me to "Hind's Feet on High Places." I read it first in Philly, a city that will forever have my heart, while I was living there for a summer doing inner-city ministry. I have actually been dwelling a lot on the idea of reading HFOHP again -- it just seems perfectly relevant in this season. The more I thought about that book, the more it seemed to be the perfect story for my struggling little firebird.
To give you an idea of the story, here is part of the description on the back:
"Follow Much-Afraid on her spiritual journey through difficult places with her two companions, Sorrow and Suffering. Learn how Much-Afraid overcomes her tormenting fears as she passes through many dangers and mounts at last to the High Places. There she gains a new name and returns to her valley of service, transformed by her union with the loving Shepherd."
In case you missed it, the book is a shameless allegory (much like Pilgrim's Progress), and it will pretty much blow your mind. Everytime I read it, my heart resonates with the plight of Much-Afraid, and God teaches me new things on every page about His kindness. The best part about this book, I would argue, is the depictation of Sorrow and Suffering as fundamental companions for the faith journey. Too many Christians miss the oh-so-important detail that we are crucified with Christ, and that we become like Hm when we share in His sufferings. That's not exactly billboard material. But my tiny girl is learning a huge faith lesson before she can even begin to comprehend it ... suffering and sorrow are a necessary part of walking with Christ, but they always serve his loving purposes. Like I said ... HFOHP is the perfect book to read her.
Unfortunately, my bookcase got commandeered by the nug ... it now houses baskets full of blankets, tiny socks and headbands. So, in typical parental fashion, I laid my selfish interests aside and conceded to leave all my books in boxes for the time being -- a big sacrafice for a bibliophile like myself. I didn't even bother to try and find my copy of HFOHP, so I stopped at Barnes and Noble on my way to the hospital tonight.
What did she think of book reading time? Well, after I breastfed her, I started reading to her while she was still alert. But she kept making her cute little baby noises and looking up at me with her giant eyes, and I got distracted by engaging with her. So we only really made it to page two. But it will surely be a story that I continue to share with her, and this copy is hers to keep.

Side Note -- Today was the first time in close to 4 months that I have made it all day in a pair of pants with a button. It's the small victories, people.

Side Note #2 -- With all the time I am spending in the car, and all the constuction on the way to the hospital, I have had a hard time staying sane. This song, and the one-woman dance parties that it inspires, are the reason that I haven't flipped off every person between here and the hospital. Turn on your speakers, get off your bum, and shake what your mama gave you. [[Sorry about the obnoxious beginning  (and the couple of curse words) ... trust me, the song is worth it]]

How Nixie Ended Up in the NICU

I realized today that some of you have been reading this blog for a month, praying for our little champion without really knowing why she was so early in the first place.

Well, here is the story. And I really am not going to spare the details. So if birth and/or blood weirds you out ... bummer.

It all started on Friday, June 10th. I got home from work at Barnes and Noble close to 11 pm; despite my exhaustion, however, I never really fell asleep. After laying in bed for awhile -- just unwinding from the day -- I started to feel sick to my stomach, accompanied by some cramping. I didn't worry too much, because I knew that Braxton-Hicks contractions (to get your uterus in shape) are normal for pregnancies in the third trimester. The cramping started to get stronger and stronger, and I remember moaning in bed as I tried in vain to fall asleep. I would find out later that the intense cramping was actually contractions so close together that they were essentially continuous. Then, around 2 in the morning, I felt a warm wetness and jumped out of bed into the bathroom. Within seconds, I had bled all over the floor -- like a seriously scary amount of blood. Our OB told us later that you know things are bad when women have blood in-between their toes -- and I certainly did. I yelled for Josh, and when he came into the bathroom, I told him to call our midwife. Since they don't directly connect you with the midwife/OB on call, we had to wait a few minutes to find out what we should do. I was still hurting pretty bad, so I laid a towel on the bed and prayed desperately to feel Tiny Cash moving ... and she did, thank the Lord. In fact, she seemed totally unaffected by my predicament. She just kept doing her little womb dance that she liked to do whenever I wanted to sleep.
After 20 min, we still hadn't heard anything, so Josh called again. Two minutes later, we heard from Sarah, one of the midwives from our practice. After getting details from us, she told us to head to the hospital. I quickly showered the blood off my legs and feet, and we jumped in the car to head to the hospital. In a moment of clarity, I told Josh to stick a key under the mat at our house in case we would need people to bring us things from home. Obviously, at 28 weeks, I had not yet packed my hospital bag.
Both Josh and I were fairly calm, and we drove as fast as possible before getting stuck behind a cop on the way -- we figured getting pulled over could seriously delay the process. As I mentioned in an earlier post, I spent the walk into the hospital clearly communicating to Tiny Cash that she needed to stay inside for a while longer. After some confusion about where to go after getting off the elevator (we also had not yet taken our hospital tour), we finally found the Labor and Delivery nurses station, where I got set up in a room. I hadn't really bled much since that initial hemorrhage, so everything was pretty calm. Josh got me registered while I laid around, and we just kind of hung out for a couple of hours waiting to get an ultrasound. I was hooked up to a fetal monitor, and TC was doing fine. I was still having contractions however, so they gave me A LOT of fluid (since dehydration can apparently start contractions) and some medicine to stop them. We weren't all that worried or scared at that point ... in fact, I was more annoyed that the ultrasound was taking so long and that they wouldn't let me eat.
When I finally had my ultrasound, they were looking for one of two things that could have caused the bleeding: (1) placenta previa, where the placenta is too low and too close to the opening of the cervix or (2) an abruption, where the placenta peels away from the inside of the uterus. After the longest ultrasound EVER, they saw neither of these problems. That was great news, and we assumed we were going home. At this point, I was still desperate for breakfast (which I got, thanks to my husband's faithful pestering), and wanting to just get discharged already. But we still needed to see our OB, and by the time he came to see us, my contractions were back and I had seriously hemorrhaged again. He stood next to my bed, watching my contractions and the baby's monitor, and left for a few minutes. When he came back, he told us that the baby's oxygen kept dipping, and my continued bleeding suggested a problem that wasn't fixing itself. And then he dropped the c-bomb ... he told us that they were going to need to get the baby out while she was stable, which meant I was going to have an emergency c-section as soon as possible.
When he left the room to get things in motion, Josh and I turned to each other in tears. I remember wondering if it was my fault -- was it my diabetes? I had been saying for weeks how much I hated being pregnant and how I just wanted to meet her already -- did I cause something to go wrong? Josh stared at me with his wet ocean eyes and told me over and over that it wasn't my fault until I believed him. At that point, we had to stop grieving the loss of our birth plan and start preparing for what was about to happen (dun, dun, DUN!). There was no part of me that even considered fighting our OB about the c-section -- his 8% section rate (versus the nation average of around 35%) means that he only does surgery when it is absolutely necessary.
I met the anesthesiologist on duty, and he told me that I was going to have a spinal block. And then the nurses came in and gave me a catheter without any anesthesia  --- WORST THING EVER! IN THE WORLD! Especially because I was bleeding again, which just complicated the issue. They gave me a dose of steriods to try and help mature the baby's lungs as much as possible before birth, and then we just had to wait. Another woman, whose situation was more dire than ours, had her c-section first. To pass the achingly-slow minutes, Josh and I took a couple of pictures.

This sucks

Josh lookin' BA in his scrub cap

 

Trying to get pumped up

When my time finally came, they told me that they were going to have me walk into surgery. Not real sure why, because as soon as I stood up, I dumped blood all over the floor. So I laid back down, and they immediately rushed me out. Josh was left behind, because he couldn't be in the room while they were giving my spinal block and finishing the surgery prep.
This is the point at which Josh started to freak out -- he just described it as "the worst, most overwhelming feeling in the world." He just had to wait in the room with my blood on the floor while his two girls were somewhere else. Thankfully, two of his good friends showed up at the hospital at just the right time to be there for him while he waited.
Meanwhile, back at the ranch ...
It was simultaneously the worst part of the experience for me too. I was in the surgery room, seperated from Josh and terrified by the prospect of a spinal block. I had to sit on the edge of my bed, bent over while they prepped the site. I was so blessed to have a wonderful nurse who asked me about my 'boyfriend' (she couldn't believe I was old enough to be married) to distract me, and she let me bury my head in her chest during the actual procedure. Turns out, a spinal block is not nearly as bad as it sounds ... way easier than the catheter. They laid me down, and finished the preparations while the assistant to the anesthesiologist tried to give me another IV (which was proved to be difficult because I had lost so much blood). He was also extremely kind and reassuring, and he seemed so relaxed that Josh and I mused about whether he had helped himself to some anesthesia. After they put up the divider that kept me from seeing the surgery, Josh was finally allowed into the room. I was in tears again, out of fear and pain from the stupid IV. When they actually started the surgery, I kept telling Josh to tell me stories to keep me distracted. He didn't perform especially well under that kind of pressure, but it meant everything in the world to have him beside me. I kept waiting and waiting to hear something, anything, that would indicate Tiny Cash was ok. When I heard her sweet little cry it was ... perfect. And oh-so-reassuring. They brought my beautiful little firebird next to the bed, all swaddled and sweet, so that I could give her a kiss before they whisked her off to the NICU. Thus her nickname became a thing of the past, and we named her Phoenix (see THIS post in case you missed the story behind her name).
The end of the surgery was the worst part ... my baby was gone, I had no idea what was happening to her, and I could feel the tugging from being sewn back together again. During the surgery, they found that the source of the bleeding was an abruption that they couldn't see on the ultrasound. We are so thankful that I had the c-section when I did, since abruption have a fairly high mortality rate for both mom and baby!
When it was all said and done, we got taken back to the labor/delivery room, where Josh caught some much needed ZZZ's. An hour or two later, he finally got to go see Phoenix in the NICU. It felt like forever before I got to see her again, because they couldn't wheel my bed down there. When I was stable enough to sit in a wheelchair, they took me to officially meet my girl.

And our journey in the NICU began!

And, side note ... she is doing really well today -- they have weaned her oxygen down a little, and she was very alert for two PO feedings in a row!

Randomness

Since so many of y'all are sending us little gifts, and some have asked what we need for Phoenix (besides prayer), we figured we would let you know what things we could still really use.
So (just an FYI) -- you can check out:

• Babies R' Us (click HERE for our registry)
• Target (click HERE for our registry)

We are also planning to using 'Charlie Banana' cloth diapers (once Phoenix is big enough, and she is not longer on milk fortifier), which you can find at http://www.charliebanana.com/ or even on Amazon. We want the 'one size' diapers in white, or the value pack called 'Tutti Frutti.'

Our mailing address is:
2800 Pine Log Way
Buford, GA 30519

Obviously, do NOT feel pressured to get anything for us. I just merely wanted to provide that info for the people who have requested it.

Now, here are a couple pictures from the last day or two:

She looked so cute in her puppy pj's

Wild woman

Forced to surrender by her swaddler

We had an interesting day at the hospital -- or rather, she had a really interesting noon feeding today. Long story short, she had a lot of water in her oxygen tube and nasal cannula that prevented her from receiving the air she needed. The result? We had a terrible go at breastfeeding (although she has made the connection that I am a source of food, and she wouldn't give up on trying to get to it today) because her oxygen saturation kept dropping. We just ended up puttting her back to bed, which gave them a chance to figure out what the problem was. Josh, on the other hand, had a wonderful bottle feeding with her at 3, followed by a nap and baby snuggles. Lucky dog.
Dr. Narayan DID start her on a diuretic (to clear any fluid out of her lungs), which has already helped with her oxygen saturation. Josh wants to make sure he gets credit for mentally prescribing a diuretic before the doctor did ... so when you see him, call him Dr. Cash.

Love you all!

Side note ... If you want to see more clips of the Cash family, I started a YouTube channel for our videos. Just visit http://www.youtube.com/user/CashFamilyAllStars for more videos of the nugget than you could possibly want (I will be adding more tonight when I wake up to pump).

In It For the Long Haul

Today is this blog's one-month anniversary -- and it has received over 15,000 pageviews in that amount of time! Thank you for loving our daughter so well through your devotion to specific and timely prayer for her (and us). She really is the most popular little girl ... ever.
And it was oh-so-appropriate that today we received this awesome bib in the mail from Josh's great aunt and uncle:

Perfect, eh?

Hopefully a month of updates about our little girl has only left you wanting more, because it looks like we are still in this for the long haul. We had a sit-down meeting with her neonatologist to talk in-depth about her current condition, his plans for the near future, and potential take-home dates.
The good news? Nobody has heard her murmur in the last day or two, meaning that PDA has closed (or is really, really small)! Thank you Lord!
The bad news? She is requiring more oxygen support than she was just a week ago -- which means the doctor is going to do another x-ray (to see if she needs diuretics again) and check her cortisone levels. It would be such a blessing to us and such a testament to the healing power of Christ if her lungs were healed without more medical intervention, so please pray with all the "umph" you can muster. If you like, you can read Luke 18:1-8 for inspiration and start bothering Jesus for Phoenix's health!
The neutral news? Dr. Narayan has left the number of daily PO feedings up to the nurses in charge of her care. This (hopefully) means that, as she continues to succeed at breast/bottle, she will be given more chances per day to eat on her own. We spent most of the day at the hospital, and she did great with two PO feedings in a row. I think the blood transfusion did wonders for her energy reserve, so pray that she maintains the stamina that it takes to learn to earn her meals!
The bummer news? It looks like the "two weeks" goal is a thing of the past. Dr. Narayan is now predicting the middle of August (insert pouty faces here).

Josh and I humbly ask that you would direct some of you prayer efforts our way. In the past 24 hours, both of us have really run the gamut of negative emotions, and have both given in to bitter tears. After our time at the hospital today, neither of us had the emotional energy to do anything but take a nap. As much as we are trying to draw strength from the Lord, our breaking-point seems nearer than ever. Josh said, "You know it's bad when you feel like the #1 thing you're doing is enduring." Both of our hearts break whenever we have to leave her and they ache for her to get better.
Here is how you can pray for the two of us:
- Pray that our spirits would be uplifted, not necessarily because of a change in her condition, but purely through the activity of the Holy Spirit at work in us.
- Pray that we would be endowed with a bounty of endurance and patience. (Can you use the word 'bounty,' when it's not Thanksgiving?)
- Pray that God would lift the burden that Josh feels to provide (emotionally and financially) for Phoenix and me -- he carries the weightiness of those pressures heavily these days. And, since he is a fixer, I know it is killing him that he can't do anything to fix Phoenix's situation. Pray that God would give Josh little ways that he can tangibly help, and also pray that he would trust God for the things he simply cannot fix.
- Pray for our relationship ... our marriage is still so new, and we currently have a very steep learning curve on how to support each other through stress and crisis. And, of course, our coping mechanisms are VERY different, so pray that we are patient and generous with one another.

Thank you all so much for all that you have done for our little family!

Good News

So it turns out a lot of the changes from yesterday were totally unnecessary.
1. Phoenix getting taken off bottle-feeding apparently had nothing to do with her oxygen changes. The nurse-practioner who saw Phoenix yesterday was reading her chart, and saw that Nixie was born at 28 weeks (but she didn't bother to do the calculating and find out that Phoenix was one day away from 29). So even though Phoenix was doing really well with bottle-feeding, the practioner decided to stop them because she technically wasn't old enough. Except she is. Ugh. So bottle feedings are back, and Josh is one happy dad!
2. The respiratory therapist who has been working with Phoenix (who is really awesome, despite the fact that she wears her scrubs high-waisted) was surprised to find her back on a high flow cannula today. She talked with Dr. Narayan, and they decided to switch Nixie back to low-flow with 100% oxygen. If she does go home on oxygen, it will be low-flow and they want her to get used to that. Who made the call to switch it yesterday? The same dang nurse-practitioner.

Here is what Phoenix has to say to that lady:

(And no, I did not manipulate her finger positioning. This was all her doing -- I merely captured it)

Other news: Phoenix is getting another blood transfusion tonight. Hopefully that will help with her oxygen saturations and with her energy. Just pray that she doesn't get dependent on these transfusions and that her little body starts making more red blood cells!

Need Some Serious Prayer

So it turns out our old friend, the PDA, is back. Because they have been trying to wean her off oxygen, she has done a lot of yo-yoing with her blood oxygen saturation, which has in turn caused her PDA to reopen.
Here is a quick synopsis of the PDA situation (and, no, this is not copy-pasted from wikipedia):

Before birth, a baby’s blood is oxygenated by the placenta, not the lungs. Because of this, the circulatory system of a fetus is very different from that of a newborn baby. A small amount of blood goes to the lungs to nourish them, but most of a fetus’s blood bypasses the lungs completely. Instead of going to the lungs, blood flows through the ductus arteriosus (a hole between the pulmonary artery and the aorta) and out to the rest of the body.

After birth, the baby begins to breathe and the lungs start to oxygenate the blood. When this happens, the PDA should close, allowing blood to flow freely to the lungs. However, when the ductus arteriosus does not close, deoxygenated blood flows through the PDA, into the aorta, and out to the body instead of going to the lungs to become oxygenated.

This damn hole just keeps coming back to haunt us ... it has already significantly closed twice, but yet here we are again. 

They are hoping it will close on its own again, but her oxygen saturation stats need to be much more stable. So she is going back to a high-flow cannula, with a lower percentage of oxygen (previously she was receiving less air through her cannula, but it was 100% oxygen). The nurse told Josh that this is a lateral step, and not a step backwards. That is a hard thing to believe, however, because the high-flow cannula disqualifies her from bottle-feeding. She was previously allowed three PO feedings per day (either breast or bottle), and that hasn't changed. What that means, however, is that Josh can't feed her for the time being. In order to get three PO feedings per day, I am going to be spending a lot more time at the hospital (especially because it is better to have them spread out). This means more gas money, more eating out (so I don't have to try and drive home), and fewer chances to get things done around the house. But I am excited about getting to spend so much time working on feeding with her!

Here is how you can pray:

- Pray that her PDA closes ... now! That pesky hole has been around too long, and we want to see God quickly and completely close it off.

- Pray that she has the focus and energy to breastfeed well. The better she gets, the more PO feedings we are allowed, and the sooner she comes home!

- Pray for her lungs ... a lot ... like all the time. Her latest x-ray still shows haziness in her lungs, meaning that she is still inflamed from being on the ventilator for so long. As her lungs heal, she will require less oxygen supplementation, which will help close her PDA. The idea of bringing her home on oxygen is really scary to me, so I would love it if God would help a sister out and just heal her lungs!

I was talking with Miles (a friend and mentor to both Josh and I) about the time that he and his family spent battling his wife's cancer. He said that it would have been easy to feel like they were on a roller-coaster, since her progress was always tainted with periods of regress. But they chose instead to let their emotions be defined by the stability of God's presence and kindness -- and this is what Josh and I are choosing to do. We have no faith in diagnoses or predicted take-home dates, but we have all kinds of faith in the God whose timing is perfect. 

As we were walking into the hospital the night before she was born, I remember pointing at my stomach and yelling "Don't even think about it! You are not ready to come out yet!" But I am so thankful that I got to meet my nugget early -- I wouldn't trade this extra time of knowing her for anything. So we are choosing to trust God as He orchestrates the perfect set of circumstances for her to come home with us.

And, once she makes it home and this is all behind us, I have decided to call her "The Girl who Lived" (in keeping with my inordinate love for Harry Potter).

Getting Closer

- The nugget broke 4 pounds today! And that was after the most massive poop of all time (seriously ... she just kept going ... it took a million wipes to clean her up) -- everyone is really happy with her weight gain.
- She kept her temperature up for a full 24 hours, so they moved the isolette out of her room and the crib is here to stay!
- She took a full bottle for Josh tonight -- she was incredibly alert and did a great job eating all by herself. This morning when I tried to breastfeed her, I was not so lucky. Sister would NOT wake up ... until, of course, we gave up and put her back in the crib.

Here are some pictures of Josh feeding her from last night and tonight:

Daddy is a natural

Eating like a champ

In her baby straight-jacket

Looking pretty in yellow

Want to have a staring contest?

And, if you thought that seeing the last Harry Potter movie would pass without comment, you were wrong.
Here are my humble musings:
- As Josh and I were sitting in the theater, I was thinking about all our fellow movie-watchers. Everyone silently applauded the selflessness, sacrifice, and courage of the characters, and would surely verbally champion the prospect of doing good in the midst of terrible opposition and even death. But how many Harry Potter fans are actually taking a stand for the virtues they applaud? I have had some visions of Phoenix in later years, fighting for truth in a generation void of gumption, heart, and morality. I pray that she is so surrendured to the will of God, to his goodness and righteousness, that she can't help but follow her moral compass. I imagine her being a champion of virtue in her actions and not just her words. (And I also imagine her with long, flowing dark hair ... but that's irrelevant)
- With that said, one of my favorite parts of the movie was Dumbledore's theory that words are the most powerful magic. As much as I desire Phoenix to be a woman of action, I also pray that she has amazing command of her words, that she would honor and glorify God, and that she would articulatley inspire those around her to know and love Him well.
- Neville was my favorite character this time around. Just sayin'.

Movin' On Up

When I showed up this morning, for the first time ever, I got to do all of the handling of Phoenix -- checked her temp, changed her diaper, took her out of the isolette, got her situated with me, breastfed her, and put on some new clothes. The nurse wasn't even in there! It was so nice to not have a babysitter while I spent time with her ... she may not have been moved as smoothly or changed as efficiently, but I got to do it all myself!

And then .... drumroll please ... I put her in her open-air crib! Check out these awesome pictures from my morning with the lady.

Extra clothes to keep her warm

My sweetie

All snuggled and sleepy

Testing out her big girl bed!

My cousin's wife sent me this sweet story about her little girl, and I can't help but share it with you:
She wrote:"Katelyn hardly ever plays with her baby dolls anymore, but last night she was in her room quietly rocking one of her babies and I heard her say "Nixie, you're getting so big, God is sure hugging you tight!"
Yes, He sure is. We are so thankful!

And, one more drumroll please ... her doctor amended his earlier prediction, and said that we should be able to take her home in TWO WEEKS!
This is both exciting and extremely overwhelming -- we have so much to do to get ready for her big arrival. Pray for focus, energy and endurance for us as we get ready to make that big transition. Can't wait!
(and if you have any baby girl clothes you want to throw our way, that would be wonderful!)

Long Time Coming

Sorry it's been a couple of days since I last posted ... there hasn't been much new to report.

Except ... they are now saying that she will be home in 3 WEEKS! The end is in sight, people!

Tonight when I went to hang out with her and work on breastfeeding with her, I figured out why she is breathing through her mouth and not her nose. As soon as I opened up her isolette, a nasty smell wafted out ... poor girl is stuck in a box with her own stink! And when I went to change her diaper, both her nurse and I were in awe of how such a tiny little girl can make so much poop -- just to show off, she then proceeded to projectile poop all over the clean diaper, my hand, and her bed. Little stinker (literally).

She is doing a really great job of maintaining her own body temperature (because she is up to 3 lbs, 11 oz now!), so they are hoping to move her to an open-air crib tonight -- she gets a big girl bed!

Not much else to report ...
- She is up to 30 cc' per feeding, and she gets two bottles and one breastfeed per day. She is learning to work for her food, and doing really well.
- No real progress with her lungs. Keep praying that God will miraculously heal her, and that she will be able to get weaned from oxygen.

She got her picture taken again yesterday (Sat) by the lovely Mary Anne Morgan. If you missed the first batch of pictures, you can check them out here. So keep your eyes out for my pictures of our little firebird!

Practice makes ... Progress!

- We gave breastfeeding another go tonight, and she was such a champ! She stayed awake longer, and got a good amount of milk from me! 
- Her echo showed that the PDA is getting smaller. They don't feel the need to intervene ... they will just keep watching it. (Sue was right!)
- They have started weaning the temperature in her isolette, with a goal of moving to an open-air crib by the end of the week! She is gaining enough weight that she should be able to maintain her own body temp ... so hopefully no more plastic cage for my baby!

I think that's it.
Except for these pictures from the last few days:

My beautiful baby

Phoenix and her luck-dragon, Darla

Wearing the "firebird" onesie that my sweet friend Katie made for her!

This Just In

- When Sue was listening to her heart last night, she said that we should have good news after her echo this week (I think it is tomorrow), because she could barely hear a murmur anymore. Hopefully that means her PDA is closed!
- No real change on the lungs front ... keep praying that she will tolerate being weaned down to less oxygen flow (and that sister will stop breathing through her mouth and stop pulling out her nasal cannula).

Apparently she had her first bottle feeding experience yesterday morning, and she ate those 5 little cc's like a champ. Even though it was good news, I broke down into tears when Josh told me yesterday afternoon. Sometimes I feel like we are an afterthought, and that decisions are made/actions taken without our consent (or without us even being aware). I would have dropped everything ... I would have walked right out of work to be there to give her that bottle. My mama heart breaks that I am not the one taking care of her and feeding her -- that is supposed to be my job. It's been interesting to observe what feels like a radical transformation in myself. On Christmas eve, when we found out I was pregnant, the last thing that I wanted was to be a mom. And now, here I am, hating every moment when I don't feel like one.

Fortunately, I got wonderful time with Phoenix last night -- and we gave breastfeeding a shot! I will try to spare you the awkward details ...
- She made the funniest faces ever -- ask Josh if you want to see an impression. Apparently the whole experience was incredibly surprising to her.
- Both of us ended up covered in breastmilk ... so clearly no effective eating took place.
- She was passed out within about 2 minutes of being with me. Oh well :)
I knew going into the experience that most preemies have a slow learning curve with breastfeeding, and Sue said she was pretty typical. But, either way, it was so neat to bond with her in a new way (even if both of us were sticky and exhausted at the end).
She did still have her feeding tube in, which is not ideal. If she didn't have her nasal cannula, they would put her feeding tube through her nose so that she could have her mouth totally freed up. Just another reason we need those little lungs to get better!

We got a cute little dragon stuffed animal -- named Darla, thanks to Josh -- to take her picture with. We will be doing that everytime she reaches a month milestone so that you can get perspective on her size. Josh took those pictures yesterday (since her one month was on Monday -- yesterday was really the first opportune time), so I will try to post those later today.

Thank you for all your thoughts, prayers, encouragement, and support!

Side note #1-- I was under the impression that cravings would stop after pregnancy. Turns out, I was wrong. The only thing I ever want to eat is smoothies ... ever.
Side note #2 -- Breastfeeding is the best thing that has ever happened to my diabetes. I need so little insulin that I keep forgetting to change my pump infusion set (because I just don't run out of insulin). Last night, I ate a snack that I forgot to bolus for, and then accidentally left the house without my pump. My blood sugar was in the 200's, and then 2 hours later it was 65. That is without any insulin, people. Craziness.

Sorry I'm Behind ...

As much as I like ending my night with Nixie snuggles, I have a hard time mustering up energy to blog at midnight. So excuse spelling errors ... and grammatical errors ... and any stupid stuff I write. 

Here is the lastest on the little lady:
- She is still steadily gaining weight, and they have increased her feedings to 28 cc's. (Side note -- our little punk pulled out her feeding tube today ... she is very crafty with those tiny hands).
- On my way home from holding her tonight, I listened to my voicemail from the last few days (those of you who know me well are not surprised by my procrastination). The last message was from one of the NICU nurses saying that I have the go-ahead to try breastfeeding her once a day! Being able to breastfeed and/or bottle-feed is a prerequisite for going home, so please pray fervently for success in this endeavor!
- She got her pictures taken on Monday, and the x-ray showed less fogginess in hear lungs -- they are getting better! So her doctor took her off her diuretic, and she also finished her sodium chloride supplement. So now she is just getting breastmilk (with fortifier), caffeine (to help with apnea) and vitamins.

Here are the long awaited bath-time pictures from Sunday:

Angry girl -- she hated having her stickers scrubbed off

Audacious Prayer #2:
We want our girl to come home ASAP, but her lungs are really the only thing that may keep her in the NICU (right now, she is doing really well with everything else). We have been hoping that she would get weaned off her supplemental oxygen so that she would go home breathing room air, but we had a nurse tell us that she was certain Phoenix would go home on oxygen. As much as I appreciate her expertise, I did not appreciate the finality of her statement.
So we want everyone to pray that God would heal her lungs, and free her from supplemental oxygen in the next two weeks. We want such a miraculous turnaround that only God would receive glory -- and I want to see her skeptical nurses stopped in their tracks. So pray boldly with us!

One Popular Little Lady

Josh and I have been overwhelmed with the way that people have lavished love and support on us in the last few weeks -- I am pretty sure Phoenix is the most popular little girl on the the planet. People that we don't know that well (or don't know at all) have come out of the woodworks to share their preemie stories, to give Nixie little gifts and to shower her in prayer. It blows my mind to see the way that Christ has leveraged his body, the church, on Phoenix's behalf. Her tiny little body is being cared for in such a huge way, and we are so thankful!

Yesterday was my baby shower. I will be completely honest with you -- I have cried more than once thinking about going to her shower. I had obviously expected to still be pregnant at this point, and the idea of going without her seemed sad and ... well, kind of awkward. I had imagined getting to go pick out a cute little maternity outfit and having people dote on my adorable baby belly and all the of fun little things that go with a baby shower. I never imagined that those things would matter to me, or that I would have to mourn just another way that Nixie's birth deviated from the norm.
But you know that amazing, Body-of-Christ kind of love I mentioned? I got a heaping helping yesterday at my shower.  I have such wonderful friends who channeled their inner Martha Stewart and threw the most beautiful party; as soon as I got there, I was asking if I could take the decorations home. There were cupcakes, loose leaf tea, lots of tiny little clothes, sweet cards, lots of laughter, some ridiculous games, finger sandwiches and all kinds of baby goods -- it was perfect. There was none of the weirdness I had feared ... only lovin'. And, just to close the deal on how awesome my friends are, the shower concluded with everyone praying over me and my girl.

The only bummer? Phoenix didn't get all the hugs and kisses that I know she would have received had she been there in person. But, don't worry ... I gave her enough love for everybody when I went to hold her before the shower. We had such an amazing time together -- she kept scootching herself to the side of my chest so that we could look at each other, and I held her for an hour and a half. Josh and I make beautiful babies ... just so you know.
Here is a quick update:
- Her umbilical stump is gone! And, no, I didn't pick it off.
- We put a onesie on her yesterday ... no more vests for my stylish little lady. 
- She graduated from wet gauze to real baby wipes. Apparently the hospital has a policy against baby wipes until they reach a certain weight. Even the little milestones are fun.
- She is up to 3 lbs, 6.2 oz. She is eating like a champ, and consumes almost a full ounce at each meal!

I gave her a bath last night for the first time (pictures to come) ... she kind of looks like a little frog because of her skinny legs, but she sure felt like a slippery amphibian when I was trying to wash her up. It is so fun when Josh and I get to take part in her care.
And, don't worry, Josh got A LOT of kangaroo time in last night. We cycled his mom, sister, and sister-in-law through to see her, so he ended up holding Phoenix for almost two hours. Lucky dog.

Thanks for you love and prayers!

Quick Update

Not much goin' on with the girl today. Sometime tonight they will probably increase her feedings to 26 cc's, but everything else is pretty much the same. She had another hard day with her oxygen -- Josh didn't get to hold her when he went this morning (and he is pissed ... he wanted everyone to know), and they had to turn up her flow while I held her tonight. Keep praying for those little lungs!

I told Josh tonight that I can't wait to see her in her crib, and in her pack n' play, and ... well, in our house in general. His response?
"You won't ever see her in those. I am never going to put her down."
"Well, she will have to lay down sometimes."
"No. Never.  .... Unless I am using the grill."
My man never ceases to have his grill and his girl on the brain. I guess that's the way it should be.

My latest frustration? I am a picker -- scabs, sunburns, you name it. I love to pick at things. And with all her dry skin, tape residue and her "lip worms" (NICU slang for rolled-up dry skin on her lips) ... I am going crazy. I just want to fiddle with her, and it takes an enormous amount of self-restraint not to spend my whole kangaroo time getting her pruned.

Josh's latest frustration? Everytime he changes a diaper, she poops in the fresh one (just to remind him who is in charge).

Little Girl, Big Day

Today was quite the day for miss Phoenix, for the following reasons:
- They added more fortifier to her feedings, so now the she is getting 24 calorie breastmilk! Hopefully that means she will continue to gain weight. She is up to 3 lbs, 2.2 oz (last time we heard).
- When we showed up, sister was wearing a shirt for the first time. See picture below:

Ok, so it is more of a vest -- Josh made plenty of jokes about it. But she was wearing more than just underpants, which seems like a big step to me.
- She had a pretty intense eye exam today, where they were checking to see whether she had retinopathy. Apparently, for lots of preemies, their eye vessels don't reach the outside of their retinas, which can necessitate laser surgery at some point. But our awesome girl has mature retinas, meaning she has blood flow to all parts of her eye. Thank you Lord!

Unfortunately, all of the aforementioned excitement was a little bit stressful for her, so she had a rough day with her oxygen. When Josh was holding her this morning, she almost got put back in her little box because her oxygen levels kept dropping too low. But, fortunately, both of us got in some snuggle time today.

Other exciting news:
 (This is Phoenix's excited face):

It sounds like me and my girl will get to begin our breastfeeding adventure in the next couple days! Don't get too excited ... she will still be fed soley through her tube. But we are hopefully going to start introducing the idea of breastfeeding to her sometime this weekend! Our nurse (who is a lactation consultant, and therefore a huge champion for breastfeeding) said that she will probably go home on some combination of breastfeeding and bottlefeeding ... meaning the two of us have a long road ahead. But I am thrilled, and would appreciate your prayers for success!

The thought of breastfeeding makes Nixie smile too!

One last prayer request:
We need to find a pediatrician for Nixie. These are the three things that we are looking for (in no particular order):
- Familiarity with preemies. Because she was premature, Phoenix will have different needs and a somewhat different development timeline. We want her doctor to be a whiz with all things having to do with prematurity!
- Proximity to our house. This whole NICU experience has taught us the importance of having health care close to home.
- Not sure how to word this one. I have had quite a few doctors in the last couple months that effectively bullied me during my appointments ... they used fear tactics to get me to do what they asked. As Josh puts it, they would dictate rather than discuss. I want her doctor to consider us partners in her healthcare and not subordinates. And I want her/him to exhibit an openness to other options/routes, in case we decide to do something unorthodox (like opt out of vaccines ... gasp!).
That is a lot to ask for, but I am sure such a physician exists. We just need to find him/her.

Side note -- Phoenix has hairy shoulders, and I not-so-secretly love it. I kind of hope it doesn't go away. Josh disagrees, although I am sure it would help him to deter potential suitors. (He is reading over my shoulder, and says "I don't need help")

PS ... If you have something snarky to say about vaccines, keep it to yourself. We have not even come close to making a decision on that, so don't stress.

Love from Dad

Medical Update:
- She is up to 24 cc's of breastmilk ... steadily increasing!
- They have decreased her oxygen flow a little bit more ... meaning her lungs are getting stronger, and she is capable of more on her own.

I am currently addicted to my c-shaped pregnancy pillow, which Josh hates. He blames the pillow for making our bed hot. And when we showed up today, Phoenix had a blanket in-between her legs and under her head, just like my pillow. Like mother, like daughter.
But we also found out today that my pillow has nothing to do with the heat factor at night ... Nixie's bed kept beeping because her temperature got too high while Josh was holding her. As a friend of mine said about her husband, Josh is a furnace.

But, as usual, it was wonderful to watch him with her. When she was settling in with him today, he told me that he sends out all his protective vibes so that she feels safe in his arms. And, based on the speed at which she passed out, I know she feels perfectly sheltered by his obvious love for her.

Over breakfast this morning, I reminded Josh of a specific time that he came over to my side of the office just to get to know me. In this particular instance, I was cutting a mailer in the workroom (a mindless and fairly tedious task). He came to "check his mailbox" or something, and ended up talking with me for a while. Like most people, I was a little taken aback by his radical honesty, and his general avoidance of meaningless chit-chat (he is really bad at small talk). But I was oh-so intrigued by this man because of his endlessly blue eyes and the tenderness they revealed. He may be kind of intense, but there was no fooling me ... his eyes were unmistakably kind. And it is so wonderful to see his tender heart beating for his little girl -- I hope that she inherits his ocean eyes, and that he teaches her how to grow in kindness.

When we were driving home from the hospital, we heard "Love Story" on the radio. We jammed out, and in the silence that followed, I said, "You know, Phoenix is going to fall in love one day."
"I know," he said, with just a little pain in his voice. "You know, I already had a father moment."
"What do you mean?"
Apparently, 12Stone showed a sentimental video about a dad and daughter (that including her wedding) on the morning of Father's day. And when Josh watched it by himself that morning to make sure it would work, he said that he couldn't help but cry. I love him, and the ways he loves me never ceases to blow my mind. I can't wait to watch Phoenix flourish in his love too!

Fourth of July

Medical update:
- Phoenix got switched from a high flow cannula in her nose to a low flow version today ... it should make it easier for her to move around and get kangarooed. But she will still be receiving the same amount of oxygen because they also increased the saturation.
- As of right now, she is showing signs of chronic lung disease, but she will only be diagnosed officially if she isn't healed up at 37 weeks (gestational age). So the Lord has 5 weeks to work with our girl and her lungs, so that hopefully we can go home without an oxygen tank and no worries about her breathing!
- She is up to 23 cc's of milk with an ultimate goal of 25 cc's. Once she gets there, they will up the calories in the milk with fortifier so we can get her chunked up!

In celebration of the holiday, Phoenix pooped on me today. When kangaroo time was over and the nurse picked her up, we found a lovely little independence-day present sitting on my belly. Thanks a lot baby.

Here are some pictures from yesterday and today:

I will never get sick of kangaroo time

Lookin' up at mommy

 Snuggling on Josh

 

Like father, like daughter