Kangaroo Time

A few quick updates:
- Phoenix had some residuals (undigested milk) last night, so they dialed back her breastmilk just a wee bit and stopped fortifying it. Not a big deal, but it just means that weight gain will be a little bit harder.
- After a blood transfusion today, she was lookin' mighty pink. And I think she felt energized by it too, because she was being her little feisty self tonight and making everything difficult for Josh and Karen (the nurse). She kept pulling the oxygen tube out of her nose, she was squirming around while Josh changed her diaper, and then she promptly pooped in the clean one. She does what she wants.
- She got her last dose of antibiotic tonight ... which means they may not have to keep her IV!
- She has another echo tomorrow to check on the status of her PDA ... pray that it will be closed!

Tonight I got to have skin-to-skin contact with Phoenix, other wise known as kangaroo care. Josh and I have both been jonesin' for this treat since we first heard of it, and it was everything I expected. I got to feel her breaths, her squirms, her fragile skin, her fingernails ... everything.
Bonding was not really part of my birthing experience -- I went into the operating room pregnant, saw none of the operation, briefly saw my baby, and then left the room empty-handed. When we first saw Nixie in the NICU, she felt like a stranger. Where was the baby that kicked me whenever I wanted to sleep, who would do a little dance on Sunday mornings when she felt the music, who would boast a bout of hiccups at every ultrasound ... where was that baby? MY baby? It has been really hard to feel like a mom because I couldn't hold her, help her, feed her, or care for her in any way.

But tonight? I felt like a mom. Even the anxious, I don't know what-the-hell I am doing part of motherhood ... I felt it. It was magical to be that close to her again.
And tomorrow Josh gets to kangaroo her too!

Josh took this one of his ladies on the iPad

Love this face ... grumpy girl.

She is so tiny!

Best. Night. Ever.

I am pretty darn tired, and therefore I've lost any capacity for eloquence.
Fortunately, the pictures from our time with Nixie tonight speak for themselves.

The summary?
Time with the baby in our arms makes us two love-drunk parents.

I got to kiss my girl for the first time since I was splayed out on the operating room table - so thankful!
And tomorrow? Kangaroo care! Skin to skin time with my baby!

Diaper changing master

Getting a baby massage

First picture of our little family (sorry it's blurry)

We are good at making cute babies

I am pretty much raptured by her

Kisses ... finally!

Euphoria

Back in her box, looking awesome (with our picture in the background)

Baby Steps

The bad news from today:
- Sister has an eye infection. When I first got there today, she opened her left eye to look at me, but her right eye was crusted shut. She eventually broke it open to look at me, but it was pretty nasty. They are giving her antibiotic eye drops over the course of a week to clear it out. A friend of mine (who so wonderfully drove me to see her) told me that squirting breast milk in a baby's eye can clear an infection ... so if those drops don't do it, I am going to be that crazy mom that asks the nurses to squirt Nixie in the eye. A mom's gotta do what a mom's gotta do. 
- Phoenix's color is looking a little pale (pale was the nurse's word; I think she looked kind of translucent), which means she may need a blood transfusion in the next couple days. This isn't really an indication of anything wrong ... they just draw a lot of blood for test, and she can't keep up.
- I saw her puke for the first time today. It looked like she was trying to suck on her ventilator tube and just gagged. But she covered her face, neck, shoulders and the blanket ... it was quite the clean-up job.
- Her PDA is the same ... keep praying for that dang hole to close!

The good news:
- When I was there at 11 this morning, she was up to 17 cc's of breastmilk at each feeding! Which means that the doctor is going to stop her nutritive drips today and just give her clear fluid instead (to keep her hydrated). That means she will be getting all her good nutrition from me -- which makes me feel like I am actually doing something to help her!
- At six tonight, they are starting her on a very short steriod regimen to prepare her to come off the ventilator. It is the same steroid I mentioned before, but this time it will only be meant to reduce inflamation around her vocal chords so she has a clear airway when they take out the tube. With only three doses, there aren't really any associated side effects. So she will come of her ventilator tomorrow! But Josh and I are trying not to get too excited ... she's been off it before, so who knows what will happen. But I am excited to get to hear her little voice again!
- Theoretically, if all goes well in the next couple days, we may get to hold her soon! I am peeing my pants just thinking about it.

Side note -- It's a good thing her little umbilical cord stump will be gone by the time she comes home ... I have an overwhelming urge to pick it off (which I'm sure is a terrible idea). You can judge me.

One Day at a Time

After bidding farewell to Josh's parents this morning, we headed to the hospital to see Phoenix.
When we showed up, she was awake and alert .... and her eyes were wide open! Up to this point, she mostly just cracked her eyes open slowly and for short periods of time, as if it took enormous effort. But today, she looked right at us for a prolonged period of time. It took everything I had not to snot all over her box while I held her gaze for a little while. It was so good for both Josh and I to get to interact with her like that ... it makes her feel more like a little person, a little soul.
Here are some pics, first with her daddy's hand and then with mine:

And here are some earlier pictures that I just hadn't put on the computer yet. She is up to 3 lbs and has grown a quarter inch ... can you see the difference?

Not too much to report today:
- They are increasing her breastmilk by 1 cc every six hours (ever other feeding). Girlfriend is eating so well!
- She pooped all by herself today -- up to this point, she has been getting glycerin suppositories. I am shamelessly proud of my baby for being able to go #2!
- Not much change with her lungs or heart, though they are slowly dialing back her ventilator. Small steps in the right direction!

We didn't stay for too long because, after a significant bout of hiccups, she looked pretty worn out. But she is having a good day!
Pray for continued progress!

Cash Ladies in the Hospital

Sorry I didn't get around to blogging yesterday ... it has been an eventful 24 hours for us.
I spent most of the day Friday in bed with a terrible migrane, and, by the afternoon, started to feel feverish too. I felt so terrible that I stayed home while Josh and friends/family went to go visit my girl.
After taking my temperature and realizing it was pretty dang high, we looked at my c-section discharge paper and it said to call if experiencing "severe headache," "fever," and "flu-like symptoms." So we called my doctor, and he told us to head to the emergency room. Ugh. Fortunately for us, he suggested we head to the same hospital where Phoenix is located (meaning Josh has gotten some quality time with her in the last day or so).
Long story short, they aren't really sure what caused my symptoms, but because of my recent surgery they wanted to watch me and make sure that there was no infection from my wound or the site of my spinal block. They pumped me full of so many different drugs, some antibiotics, and a whole bunch of fluids in the ER ... so it's a good thing I am feeling better this morning. Hopefully they will clear me to see my little nugget before we head home (hopefully today).
I feel like I am experiencing just a fraction of what my tiny girl is going through ... getting stuck with IVs, being messed with on a regular schedule, getting blood drawn, etc. When I had a chest x-ray yesterday (why, you might ask? I couldn't tell you), the tech who took my pictures has taken some of Nixie too. I told Josh that she is one tough little lady ... certainly much tougher than me.

So here is the latest on her (since that is why you actually read this blog):
About a week or so ago, they started to hear a heart murmur that was indicative of a PDA. Before birth, a large artery called the ductus arteriosus lets blood bypass the lungs because the baby gets its oxygen through the placenta. The ductus arteriosus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen. Unfortunately for lots of preemies (including our own), that hole doesn't close up. They did an echocardiogram and found she had a fairly large PDA, so they gave her medicine that shrunk it significantly, and they expected it to close on its own. But yesterday they heard the murmur again, and the cardiologist came to check her out. Turns out her PDA is back in full force, probably as a result of her infection. Both our neonatologist and the cardiologist expect the PDA to shrink back down on it's own once her body is totally recovered from the infection. In the event that it doesn't close, however, they have to prepare to give her another round of medication to fix it. Unfortunately, they cannot give her that medicine if she has had dexamethasone, so giving her that steroid is no longer an option.
Which means it is all the most important that her lungs get strong enough on their own to free her from the ventilator ... because the longer she is on it, the more inflammed her lungs get and the more risk for chronic lung disease. So please, please, please continue to pray!
On the plus side, they are aggresively increasing her breastmilk feedings, which means her stomach and intestines are just getting stronger. Plus, breastmilk is pretty much a superfood for preemies, so hopefully it will help her little body continue to get stronger.
And, this is nothing new, but everyone who meets her tells us how cute she is. Last night Josh took two of his good friends from Indiana (who are in town staying at our house to help out) to go see her, and she was showin' off all her best moves. Someday I will work on getting a video of her.

Thanks for loving us and our baby so well!

Audacious Prayers

Today's update:
The good news -- Nixie is getting her breast milk feedings again! They started her this morning, and so far they haven't seen any residual (undigested milk). Hopefully that means her little belly is feeling better. And, it is looking like her infection might be going away. We will find out tomorrow for sure, but it looks like her antibiotics are working.
The bad news -- we got some tough news that involves a decision on our part. Phoenix's lungs are showing signs of inflammation from being on the ventilator so long, which poses some formidable risks. Our doctor suggested that her lungs look like they are on their way to developing BDP (bronchopulmonary dysplasia), which can involve chronic lung disease, mechanical dependency or even death. She could outgrow BDP symptoms, or it could be pretty bad. His suggestion? Give her a steroid called dexamethasone. Unfortunately, this drug has some potential side effects -- it is an immunosuppressant, so that would make her very sensitive to infection. And the long term side effects could affect her brain and her growth.
Since the ideal window for administering dexamethasone ends at 14 days, we really need to make the decision by tomorrow.
But here is what we want instead: we want miraculous healing of her lungs by tomorrow (meaning she could get taken off her ventilator) so that we don't have to choose the lesser of two evils.
Go read Genesis 18:16-33 (click here). Seriously, go read it.
That passage makes me a firm believer in audacious prayer; I believe God wants us to ask great and impossible things. We could easily ask you to pray against side effects from the steroid, but why not ask more of God? He has proven Himself capable! By the end of Genesis 18, Abraham realized how much the response of God depended on his own willingness to ask boldly.
So be bold in prayer with us, and ask for her healing!
Here is the deal -- "If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!"

Name Game

Not too much is new on the Phoenix front today. They decreased her ventilator settings just a wee bit, but her little stomach is still producing weird green mucus stuff. She has her labs tomorrow morning, so we will find out on Saturday whether she has kicked her infection. Her nurse today (Lisa) told us that she is starting to tolerate touch a little better, which rocks my world because hopefully that means we will get to have a little more contact with her in the coming days. Preemies haven't developed the nerve synapses that allow them to process stimuli from their senses -- in other words, if she were a robot or a talking computer, she would respond to touch with a glaring metallic yell of "system overload"! In reality, she just makes funny little scruncy faces that communicate her displeasure.
She is still just as cute as ever ... see? (excuse the low picture quality ... took it on my phone)

She looked like a tiny, fragile little bird all curled up in a nest. Not just any bird, of course ... a firebird. For those of you who are under-acquainted with mythology and/or Harry Potter, a phoenix is a mythical bird that "has a 500 to 1000 year life-cycle, near the end of which it builds itself a nest of twigs that then ignites; both nest and bird burn fiercely and are reduced to ashes, from which a new, young phoenix or phoenix egg arises, reborn anew to live again."
Reasons we decided to name our firstborn after the aforementioned bird:
1. Josh loves all kinds of mythlogical creatures ... but I vetoed "Dragon" as a potential name for my baby.
2. Phoenixes are literally born from ashes. This first seemed appropriate because my diabetes (and all it's potential complications) felt like ashes ... a difficult medium with which to bring forth new life. When we picked the name, the idea of a healthy baby felt like it would be a victory born only out of the kindness of god. And the name feels even more appropriate now -- her premature birth feels also like ashes from which we hope to watch our firebird rise.
3. Phoenixes are associated with rebirth. We pray fervently for the day that she is lit on fire, has her flesh burned up and is reborn into new life with Christ. "When the kindness and love of God our Savior appeared, he saved us, not because of righteous things we had done, but because of his mercy. He saved us through the washing of rebirth and renewal by the Holy Spirit, whom he poured out on us generously through Jesus Christ our Savior, so that, having been justified by his grace, we might become heirs having the hope of eternal life." (Titus 3:4-7)
4. Because Phoenix Cash is a rock-star name if I have ever heard one. She is destined to be great with name so awesome. (Much to my dismay, someone told me that it sounds like the name of a girl who would be on the cover of Maxim. I certainly hope not.)

You are probably asking yourself how we came across such an awesome name. Well let me tell you. There is a customer who occasionally stops into the Barnes and Noble where I work who exudes a midlife coolness that I hope to embody in later years. We have chatted more than once when I have helped her find books, and the last time she was in the store she asked if we had picked a name yet.
"No, we can't agree on anything," I replied.
"You should name her Phoenix."
Just like that, she told me what she thought I should name my baby. I was normally annoyed by that kind of audacity, but I loved the name as soon as she said it. First thing when I got home that night, I ran it by Josh. And, miracle of miracles, he liked it too! It just felt perfectly right to both of us. I think Jesus may have had a hand in orchestrating that particular customer encounter.
And that's the story behind her name.

Please pray tonight for God to clear the infection from her body before her labs tomorrow morning ... it's going to be hard for her to move forward in any way until it's gone.
Love you all!

First thing: We have the cutest baby ever. On the planet. Just look at the picture in the sidebar  -------->

Unfortunately, our sweet little nugget is stuck in the NICU, trying to recover from getting ripped out of her happy little womb-home. 
Due to the barrage of loving/concerned emails, phone calls, questions, text messages, and facebook posts that have come our way in the last week, it became clear that we need to streamline our communication. Despite the best intentions, it has been wearing on us to share information one individual at a time.
It was either this blog or a homemade t-shirt for Josh that reads "Don't ask me how I am doing. My baby is in a box 30 miles away."
This blog is now your one-stop-shop for information, pictures and updates. I will try to update it as often as possible, so keep checking back to see her progession.

Here is Josh's contribution:
Me: "What should we say in this blog?"
Josh: "Our daughter is neat."
True, true. She is pretty much the coolest person I have ever met. You would think that it would be too soon for her to exhibit much of a personality, but she definitely has a unique and beautiful spirit to her. She is feisty, stubborn, resourceful (ex. while Josh had her arms pinned down to take her temperature, she started pushing him away with her feet), sweet, expressive, strong, perseverant and freakin' adorable. I could just sit and stare at her all day -- good thing, because that's about all I am allowed to do at this point. Both Josh and I are literally aching for the day that we get to hold her for the first time.

Here is her current status:
- She is on a ventilator -- her little lungs aren't quite strong enough to do it on their own at this point. She was actually off her ventilator for a day or two, but had an episode in the middle of the night where she stopped breathing and she had to be intubated again. Lame sauce. But it's good that she's getting all the air she needs.
- She gets her nutrition and meds via IV. For a while she had a PICC line and an umbilical line, but those were both removed today. The good news? Her PICC line site was gross and irritated, so it must be nice for her to have it gone. The bad news? Her IV's don't last more than a couple days, so she has to have the site changed fairly often.
- She is currently fighting an infection. We aren't quite sure the source or site of the infection, but she is on two pretty heavy duty antibiotics. Pray that her blood tests come back negative on Friday!
- She was getting 3 cc's of breast milk every couple hours, but her stomach is currently producing some nasty colored junk that they have to suction out through a tube in her mouth, so they stopped the breastmilk for now. Hopefully her belly will get better quick, so they can keep stimulating her gut to get her ready for nutritive breastmilk feedings. That way I won't be pumping in vain :)

That's all that I can think of right now. Honestly, I am way too tired to be creating a blog. If it sucks, I blame it on the fact that I have to wake up every three hours to pump. Ugh.

Love you all, and keep praying. We have a long way to go, but we are so thankful not to be walking it alone!