*Meant to post this last night after I left the hospital, but I fell
asleep when I got home instead!

Sayla Grace continues to thrive. She now weighs 2lbs 4.2ozs and is
growing more every day. They have increased her feedings to 9cc's an
hour. She is also getting some extra help in the calorie department.

They have added "Human Milk Fortifier" to my milk, and it adds 28
calories to each feeding. That may not seem like a lot to me and you,
but for her tiny body it is. The "Fortifier" just adds the extra
calories, along with some important nutrients that my milk might be
missing. Apparently the milk from the mother of a preemie is different
than that of a term baby.

She will finish her "preventative" IV meds tomorrow, and hopefully her
IV's will be removed. They've had to move them around a couple of
times (from head to arms, back to head) because they weren't flushing
well.

Today during my visit she was being very unladylike and tooting a lot!
It was actually kind of cute to see someone so dainty and cute
tooting. (Or hear it rather). Fortunately it didn't smell!

Then this evening she finished it off with a big nasty diaper. We
determined that her meals today must have been from the other night
when I had mexican for dinner. No more of that!!! At least her bowels
work!!

On to more pleasant topics...

Pretty much every other weekend, mom (aka Mimi) and I go to get our
nails done. We've done this for as long as I can remember. I can't
wait for the day when we can take Sayla Grace.

Actually I should say I "couldn't" wait! I noticed her tiny nails
were growing like crazy, and I've seen a few random scratches from
where she's accidentally scratched herself. So I brought the nail
salon to her, got her a baby nail file, and gave her a manicure
tonight!

I was kind of nervous about it, but "like mother like daughter" I
guess. She slept right through the whole pampering session. Which is
good news for when she gets home and really needs them filed or cut.
And now I know how to do it without bothering her.

So all in all she's doing well! Thank you for your continued prayers!

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I'm very sorry for the lack of updates in the past few days. First let me tell you that everything is going well...we've just been busy getting settled back in the pods. I'll fill you in on where we've been...

Sayla Grace has come out of isolation with no signs of Whooping Cough. In fact, there is a distinct possibility that she never actually had it, but I can't get anyone to confirm for sure. Sometimes I'm not sure if they really don't know the answers to my questions, or if they don't want to tell me. I've yet to figure them out!

Anywho...when all this Whooping Cough business started, they did a "rapid" test to see if she had it. A rapid test is just a nose swab - kind of like a rapid strep test where they swab your throat - and it tells them "rapidly" if she's got Whooping Cough. And as you know, it was positive.

Well, then they sent off a blood culture, which came back negative. But no one I asked could explain that. So we did a little reconnaissance work and found out that the rapid test has a very high false positive rate. I can't remember how much exactly, but it's more than 50% I think. Don't hold me to that. But it's high.

So since the culture came back negative, we think she didn't have it. Again, getting conflicting info from every nurse I ask, so I'm not sure. But they treated her like she did have it, so I guess that's good.

But she got to come out of isolation Thursday, and we've been getting her settled in her new pod. She's now across the hall from where she was. It's a quieter pod, and I like that.

But when she got back into the pod, she started to act up. Having like 7 Brady's in 4 hours...and increased apnea spells as well. She was acting up so much that they did a CBC (Complete Blood Count) and culture to be sure she doesn't have an infection. So far the culture has come back negative, but it still has a few more days to "grow" something.

As such, they are treating her with antibiotics - they are all about preventative medicine. I don't necessarily like that, because she's just getting fed meds, but at the same time, I don't want them to wait the 3 days for the culture to grow, and her have an infection growing inside her. It's a catch 22, and I guess the best option is the medicine.

The CBC did should that her hematocrit level was low at 28. 40 is where it needs to be, and 35 is the threshold for getting blood. Babies her age/size cannot produce their own blood yet, and every time they take her blood for tests, they deplete her supply. And her body uses the cells up on its own. So every once and a while, her "crit" level will be low and she will need a blood transfusion. This was her 5th transfusion. (Don't worry, she'll grow out of this and begin to produce her own blood soon).

So she received 18cc's of her Aunt Amanda's blood yesterday. And today she's doing much better. Her "crit" level is up to 41, and her A&B episodes have slowed down to a normal rate.

She's also had some "eye goopies" in her left eye, and it was really bothering me. For a couple of days it was so bad she couldn't open her left eye, so I grabbed a piece of gauze, wet it and got the goopies out myself.

One of the nurses finally noticed it, and cultured her eye goopies too. Just to be sure it's not infected since it's only in her left eye. Again, preventative medicine...rather than wait for the culture to come back, she's getting antibiotic eye ointment put on her eyes (both of them) a few times a day. Since that started, the goopies have disappeared.

And on to happier news...Wednesday was Sayla Grace's 4 week birthday!! Technically she's not a full month old until tomorrow (the 29th), but 4 weeks is a big mark!! I cannot believe she's been in our lives for a full month. When I think of the amazing things God has done during this month, I am completely in awe of his power.

A month and a half ago, I was lying in a hospital bed wrestling with so many emotions, trying to keep her from being born. But God helped me through those emotions. And even though she's tiny, and we have struggles through this journey, I wouldn't change what happened for the world. God has a plan for her.

She is the greatest blessing Owen and I could ever ask for. She has brought us closer together...closer than we already were. She has solidified our faith and strengthened it. She has shown others the miracles of God, through her tiny smile.

Wednesday I got to hold her for the first time. It was the most surreal, precious moment of my life. To hold this sweet creation of God in my arms. To have her look into my eyes with the sweetest glance. She held me as much as I held her. Again I sang to her, she looked into my eyes when I started singing her favorite song, I let her know everything is going to be alright...

And she smiled.

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We had a party in SGP's crib tonight! She has reached 2 pounds!!!

She's still doing well. Has some gunk in her throat tonight while I
was visiting, so the nurse had to "suction catheter" her. Basically
took a long skinny suction tube up her nose and down her throat to
clear her out. I couldn't watch. She hated it, and so did I. But she
needed it.

Afterwards she sneezed 8 times! It was the cutest thing E-VER!! I
wish I had it on video so I could share it with you guys. She gets so
worked up and takes a bunch of quick deep breaths, and then let's out
the most tiny sneeze you have ever seen. Think of a full term baby
sneezing and divide it by a thousand. Tiny!! But the gunk was gone,
so she felt better.

The gunk was just a result of the 2 feeding tubes in her throat and
her inability to clear saliva from her throat at this age.

Still showing no signs of Whooping Cough (WC). Her "iso-neighbor" will
be leaving tomorrow, and the other 2 in iso have finished their meds
and will be joining the other pod-mates in the next day or so. That
means SGP will be all by her lonesome. As a result (and mainly due to
staffing), they will probably move her back to the pod. Her meds
finish on Tuesday, so she is protected. Plus since the 4 babies that
caught WC are better, it should be gone.

But let's pray 2 prayers: One, that the WC is gone, and there are no
other illnesses out there; and two, that she gets to stay in isolation
for a bit longer, so she can put some meat on her bones and build up
her immune system a bit more before being reintroduced into the pods.

I know these are selfish prayers, but we're so on edge about her
contracting something else, and beating this current "yucky" that our
nerves are getting the best of us. We don't do well on the downhill
section of the roller coaster, but our faith is getting us through.

Tonight I read to her from The Complete Works of Winnie the Pooh. She
enjoyed hearing about Pooh's trials in attempting to get the "hunny"
from the tree.

Tomorrow we'll see if Pooh was successful...

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Today has been a better day so far. Sayla Grace is settled in isolation, and is acting like her normal self. Here's what we know so far...

On Friday while I was visiting, things were eerily quite around the NICU. It was lunch time for most nurses, and all of the parents (except for those of 2 babies) happened to be visiting.

I started noticing some doctors and nurses come in that I had not seen before. I knew they didn't belong in the NICU. And to top it off, they were wearing surgical masks. I thought it was odd, but thought maybe one of them was coming ill, and wanted to be careful. Little did I know what was about to happen.

Suddenly all of the nurses were huddled outside of our pod at the nurses station. Chatting about something important.

My mom is a nurse (though no longer practicing), and used to work in a hospital with one of my friend's mom's. When we were little, and they would work the night shift, we would sometimes go with them...roam the halls and sleep in an empty room. At that age it was fun. But I learned that when things get quiet andblasé around a hospital, you should be very worried! And when nurses huddle...you should be even more worried!

Something was not right.

Then one of the nurses came around and handed everyone a surgical mask to wear. She simply said...very calmly I might add..."One of the parent's in another pod brought in Whooping Cough. Please wear this mask every time you visit." I half expected her to finish by saying "and thank you for flyingNICU airlines." That's how calm and almost fake cheerful she was.

So I put on my mask, got a bit claustrophobic, and went back to visiting with SGP. Her nurse came over and swabbed the inside of Sayla Grace's nose with a q-tip looking thing. Said they were testing all of the babies as a precaution, even though it started in another pod. A quick swab and a whimper from MissPriss (as she's come to be known by the staff), and she was done.

A short time later, another nurse came around...this one in a white lab coat that was not a NICU nurse. I'm still not sure what area of the hospital she's from. Infectious disease maybe?

Anywho...she came around giving all the parents a handout with info about "Pertussis" (aka Whooping Cough). I was the 3rd parent she came to. The first two just went about their business after talking to her, attending to their babies.

She handed me the sheet, and again told me that a parent brought it into another pod. That they had tested the babies in that pod, and at least 2 tested positive so far and were moved to isolation. That they were testing all of the babies. She told me there are two strains of the disease, and that they think they are dealing with the lesser strain, but they are treating it like they have the more severe one.

She told me that they had tested SGP, and that she tested positive.

I lost it. Started hysterically crying behind my mask. She hugged me. She explained they would move her into isolation, treat her with a 5 day course of antibiotics, as well as me, Owen and anyone who had visited within the last 7 days. I began writing down the names of the visitors through my tears.

Visiting hours were over at that moment, and I had to leave for 2 hours. In between sobs, I sang You Are My Sunshine to her again, as she rested quietly. They would move her into isolation during those 2 hours, and I would be back at 4p that evening.

I visited from 4-6p, went to dinner with Owen and mom, and Owen and I went back from 8-10p. We had a good visit. Sayla Grace seemed very comfy. She had 2 excellent nurses taking care of her, I got to wash her face during her bath, and sang to her while she slept.

Today she was doing great when I visited this morning. So far she has not showed any symptoms. At this stage, the symptoms are not actually coughing - cause she can't physically cough yet - it's more that her Brady episodes will increase, and she'll have more mucus secretions.

But so far so good. No increased Brady's, and she's been on her Nasal Cannula non-stop since Thursday. She's up to 6cc's on her feedings again, and she weighs 1lb 14.8oz. She's just resting quietly in her new room. It's quieter in there, and she's got a cute little neighbor that I'm assuming has Whooping Cough too, but I haven't met her parents yet.

Because it's quieter, she opens her eyes more, checking out her new digs. I actually do get to touch her still, but I limit myself just so she can rest.

She will stay in isolation for the 5 day course of antibiotics, and will then be tested again. Prayerfully she will be well. Although I'd kind of like for her to stay in isolation, because of the fear of her getting sick again.

Please continue to pray. Your prayers are felt every day. Today I felt that peace come over me again as I watched her sleep. And I know it is because of your prayers that it was caught early, and she is doing so well. We could never repay you for the good work you've done to help our daughter, but the Good Lord will one day.

Here are some pictures from today's visit...those big things on her cheeks are little pads to hold the Nasal Cannula in place. In this first one, she has learned how to pick up her head and turn to the other side. She's hugging a wash cloth that was folded in half...

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A parent of another baby brought Whooping Cough into the pod next to
us. There are 4 pods with 10 beds each in them. The pod next to us
has been cleared out and sterilized. 2 babies in that pod tested
positive.

Whooping cough is a highly contagious bacterial infection of the
respiratory system. It is very dangerous for preemies, and extremely
dangerous for micro-preemies.

They tested all the babies and nurses in the entire unit.

Sayla Grace tested positive. She has been moved to isolation, and will
be treated with a 5 day course of antibiotics. They think they caught
it early, as she has not displayed any signs of being sick. Her temp
is normal, and they are feeding her again. But she is not out of the
woods.

Please drop to your knees and ask the Great Physician to heal every
cell in her tiny body. We need you to be in constant prayer. Pray
for her healing. Pray for the doctors and nurses-that they stay well.
Pray that Owen and I stay well (we'll be tested tonight). Pray that
she gets the rest she needs while in isolation.

We can still visit her in isolation. Please pray for me, as I will
probably not be able to touch her, and the thought of that is very
difficult for me. I know she needs her mother's touch, and right now I
know it's best not to touch her.

This afternoon she was very fussy, so I started singing to her and she
calmed down right away.

You Are My Sunshine is her favorite song.

Please pray for her.

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Yesterday we received a call from the NICU about Sayla Grace. Her
belly was looking distended, so they were stopping her feedings.

Not a huge deal. They will stop and start her feedings a lot right
now. They can't risk an infection in her belly if she's having any
trouble digesting. As a result, they also took her TP tube out,
because she had wiggled it out of the right spot.

She was also having trouble pooping again, so they gave her another
glycerin chip tp help her along. One day she's going to be really mad
at me for disclosing her consipation issues with the world!! Sorry
sweetie!!

So they stopped her feedings, and decided to put her on the Nasal
Cannula for the entire night. They did this because the CPAP can push
extra air into her belly. So the thought was that with the NC, her
belly could get a break from all that extra air.

Checked on her this morning while waiting for my turn at the doctors
office. They just put the TP tube back in, and are waiting on the
xray to be sure it's in the right spot. They will resume her feedings
again once they are sure it's in there good.

She's still on the NC, and has only had a few Brady's. But not enough
to put her back on the CPAP.

I'm walking down the hall to see her now (trying not to run into
anything as I type!). If there are any changes, I'll update.

Sorry for the lack of pictures. The computer with the pictures on it
has decided not to connect to the internet the past 3 days!

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Here's a little comparison of pictures to show how far we've come. The first is one of the first pictures I took of her after she was born at 27 weeks. The second is 3 weeks later at 30 weeks. Well, 30 weeks is her adjusted age. She's actually almost 3 weeks old in the second picture. Believe it or not, she actually weighed less in the second picture...

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As I watched our baby girl sleep tonight, I was reminded again of the amazing love that surrounds her.

We received a call from the NICU tonight at around 7p, telling us that beginning tomorrow, they will be closing the unit to all extra visitors. Only moms and dads can visit. Apparently there is an epidemic of sorts in our area going on with the H1N1 (Swine Flu) virus. It seems to be running rampant. As a result, the infection control section of the hospital, along with the NICU staff, have decided to limit visitors to the NICU to only parents of the babies. No brothers and sisters, no grandparents...just us.

I can't blame them, and frankly I'm quite happy they are taking such measures to keep the babies safe. But I'm sad that our family, who has come accustomed to seeing her, will have to be without her for a while. You'll be seeing many more pictures on the blog because of this!!

So we called all of our parents to invite them to come in tonight to see her. As they each took turns huddled around her bed, looking into her eyes for the first time since she was born 3 weeks ago, whispering sweet nothings into her tiny ears, I was reminded of the overwhelming love that envelopes her tiny life. It's a love like I have never experienced before.

I have felt love before, but never like this. She is loved by people so close to her, and also by many that have never met her. Some that have only heard about her through word of mouth. It amazes me that such a tiny heart can touch so many lives. The testimony she is building will be a great one for the Kingdom of God as she grows older.

I've been told by other parents in the NICU that they watch me at her bedside. They describe how strong and peaceful I look. And they talk about how they could never be this brave, how they are thankful their baby wasn't as tiny as ours. They wonder how I manage...how I get through every day. My answer is simple, and always the same...

God. He brought us to this trial, because He knows we can handle it. He knows our limits, and He will never give us more than we can manage.

That's not to say it's easy. Every day is a struggle in some way, shape or form. Whether it be surrounding her, or some other stress in our lives. But there are 2 ways to look at the situation. We could either sit here and be miserable...sad that she's there and we're here, and everything that surrounds that. Or we could find the blessing in the situation. As a NICU friend told us...she's not supposed to be here yet. She's still growing, just in a different place. And now we get to see the miracle of life form before our very eyes.

Little things we take for granted...like the fact that her ear canals have not formed yet, or that her vocal cords are so tiny she barely makes a peep when she cries. We get to witness God's miracle being formed perfectly outside of the womb. It is a true blessing!

As I sit here writing this, Sayla Grace is turning 3 weeks old. The night she was born, I handed her to God. I gave her tiny life to Him to take care of, because I am helpless without Him. This is all part of His plan.

I was reminded of that as I lay in that hospital bed for 2 weeks. A peace beyond my understand came over me, and I knew she would be alright.

"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." ~Philippians 4:7

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Sayla Grace continues to amaze us. The doctors and nurses are pushing her limits, and she's not only meeting those limits, she's starting to exceed some of them! Here's the latest from our afternoon visit...

Her Billirubin levels are down to 1.7!! The nurse is going to ask Dr. Bruce if we can turn off the Billi light since it's so low. She doesn't have to get down to zero for the light to be off, so we're hopeful that even just for a little bit we can give her face a break from the Billi mask. It's possible her levels may rise again, but we're fine with that, as long as she can have a break.

They have stopped giving her Lipids!! Lipids are basically liquid fats, and she's been getting them through her PICC line since she's been there. Because she's getting so much breast milk now, they decided she no longer needs the Lipids.

Her TPN level is down to 1, which is the lowest setting. TPN stands for Total Parenteral Nutrition, and it's basically a mixture of vitamins and minerals that she's getting through the PICC line to supplement the breast milk. But since they've increased her feedings, she needs less. They might even stop them all together soon, which means they will take out the PICC line. They are dragging their feet on this though (and I'm happy they are), because if they take out the PICC line, and she needs another IV for some reason, they will have to stick her again. They can't just heparin lock the PICC line like they would a normal IV. If it's not being used, they have to take it out. So it could be in for a little bit longer as they see how she does over the next few days.

They've increased her feedings to 6cc's every hour for 3 hours, then an hour break. So she's getting 18cc's every 3 hours. 30cc's is an ounce, so she's on her way! 18cc's looks like a lot when I see it in the syringe, but really it's not that much.

She's pooping regularly now. Though they did give her a Glycerin Chip today because her belly was looking rather large. It worked, and she pooped twice.

She's up to 2 hours on the Nasal Cannula, and 2 hours on the CPAP. And she's doing very well while on the Cannula. They will gradually increase her time on it, and decrease the time on the CPAP.

Her Brady's and desats (when she drops her oxygen levels) are down, and typically only happen when she's being messed with or when she's wiggled her prongs out of her nose.

She weighs 1lb 12oz. If she continues to gain an ounce a day, she'll be at 2lbs by Saturday!! We will have a little party by her bedside when this happens!! And if she keeps up with an ounce a day, we might get to hold her around the second week in September!! Oh what a joyous day that will be!!

We got her chest x-ray back, and it's still "hazy, but consistent with RDS." RDS stands for Respiratory Distress Syndrome, and is common in babies her size. She was diagnosed with RDS after the first chest x-ray. They have been so blasé about the whole thing, I forgot to mention it.

It means that her lungs are under developed. Think of a new balloon. When you first go to blow it up, it's very difficult, because the balloon hasn't stretched out yet. But if you blow it up, then let all the air out, the second time you blow it up it's a lot easier.

Her lungs are like that balloon. Except every time she takes a breath, it's like blowing up the balloon for the first time. It's because her lungs do not produce enough of a chemical called Surfactant. Surfactant helps to keep the lungs open, so that it's easier to breathe. Babies normally make Surfactant during the third trimester. Since she was born in the second trimester, she didn't have time to make an adequate supply. But now that she's growing bigger, she's starting to make more Surfactant, so her RDS should clear on it's own with time.

The only long term side effects are the possibility of increased bronchial infections in her baby and toddler stages, and the possibility of asthma. But she could grow out of it completely and have no side effects.

But as you can see, she's moving right along! Thank you for your continued prayers!

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As of our visit this afternoon, here's a quick update on SGP:

•She weighs 1lb 11oz! She was at 1lb 11.2oz, and then dropped to 1lb
10.6oz - they say it could've been because she had more wires on her
the night she weighed 11.2ozs, but they weren't concerned about the
drop nonetheless. Especially since she's back up to 1lb 11oz again.

•She's up to 5cc's of breast milk every hour. She gets the 5cc's every
hour for 3 hours, then gets an hour break, then 5cc's for 3 hours
again. And they cycle her throughout the day like that. She's been
steadily getting more and more each day, and is tolerating it well.

•She had a blowout this morning! For those of you not down with baby
lingo, that means she had a huge dirty diaper that "blew out" of the
sides of the diaper. We have been praying for this, and the prayers
worked!

•Her Billirubin levels are at 2.3! She's still under the light, and
probably will be for a while, but as long as this number goes down
we'll be happy. And all her other labs this morning were normal.

•And the biggest news of all, is that she's back on the Nasal Cannula!
She goes on it for an hour, and then back on the CPAP for 3 hours.
She has been doing very well with it. They will continue this cycle
as long as she does well, gradually increasing her time on the Nasal
Cannula and decreasing her time on the CPAP.

Specific prayers needed this week are:
•Continued success on the Nasal Cannula
•Clear chest x-ray in the morning
•Continued normal growth of all of her organs

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Here's the latest pictures from the week. Many of them look the same from the last set, but I promise they are different! At the end, there are pictures of her face from bath time.

Sayla Grace asks that you please ignore her pug nose. It's puggy because her CPAP constantly pushes up on it. But as soon as she's on the Nasal Cannula, her nose will not be puggy anymore!

Enjoy!

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When Owen and I got married last year, we did a little something different during the processional. Rather than play the standard Canon in D while our wedding party walked down the aisle, my very talented uncle sang Amazing Grace while playing the guitar. The Chris Tomlin
version.

It's one of my favorite songs. It reminds me of the growth in our faith that Owen and I have experienced throughout our relationship.

Tonight I was again reminded of God's Amazing Grace in our lives.

I got some more Mommy/Daughter time. Just me and Itty Bit.

I sang to her. I sang "Jesus Loves Me" - the version I learned at summer camp as a child. I sang "You Are My Sunshine" but rather than sing "...please don't take my sunshine away" (because that's depressing) I sang "...please make my sun shine all day."

I sang "Amazing Grace." And she smiled at me.

Then God blessed me beyond measure.

You see, I had asked the nursing staff when her bath time is. I have witnessed all other aspects of her care, except bath time. I didn't want to help, because I know she's too small and they are specially trained to bathe her quickly. I just wanted to be there to watch.

I was told they do it in the middle of the night, when things are quiet, and that it's very quick. They told me it would be a while before I could be there during bath time. So I resolved to wait.

But tonight, during our time together, after her diaper change (which I got to do again!), the nurse decided to go ahead and get her weight while she was sans diaper. But getting her weight meant moving her. Which meant unhooking her from all her wires and such. So while she was all undone, she got a bath. And I was there.

I got to see her without her wires. Just pure and simple.

I got to see her beautiful face. It was only the second time for me to see her face since her birth. She has changed a lot since the last time I saw her face. She is even more beautiful than I remembered.

And God was there again tonight. I saw Him in her eyes. Staring back up at me.

"For when two or three are gathered in my name, there am I among them." ~Matthew 18:20

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We are learning a lot of medical terms during this process. Most of them are abbreviated, and sometimes it's hard to keep up with all of them. Some of this is a repeat from previous posts, but I thought it would be helpful to have all in one place. Here's a helpful glossary of terms/conditions that Sayla Grace has experienced thus far. And one (NEC) that we hope she doesn't experience...

Micro Preemie - Babies born before 29 weeks and/or weighing less than 3 pounds. She managed to hit both of those marks, being born at 27 weeks, weighing 1lb 11oz. Her diaper is the smallest they make (Preemie XS) and is the size of my Blackberry Curve, and doesn't fit her (I've washed lots of peed on blankets!). She can't wear clothes until she graduates to the "incubator" type bed, and even then will be in preemie clothes. They actually make "micro preemie" clothes, but I'm hopeful we won't need any of those by the time she makes it to the next bed.

A&B Episodes - Apnea (stops breathing) and Brady (heart rate slows) episodes where either of these events happens. Sometimes it can just be one, sometimes it can be both. They are super common in babies her size, but super scary to watch. It's basically like watching your baby's heart stop (or watching her stop breathing) and then waiting on a nurse to come over and slap her on the tush to make it all go again. And all you are allowed to do is stand there and watch...and trust in God with all your heart that it will start again. Agonizing, but it's part of the process. Thankfully as her lungs and brain mature, these episodes are getting fewer, and less severe.

CPAP - Continuous Positive Airway Pressure...basically a machine hooked up to her little nose that breathes for her when she forgets. Right now, it's giving her 20 breaths per minute, with 21% oxygen. That 21% is the same percentage that you and I breathe as "room air," so we are thankful that she is not requiring extra oxygen. Too much extra oxygen runs the risk of brain development issues, as well as eye issues. Soon they will try to wean her 20 breaths a minute down to 0, and switch her over to the...

NC - Nasal Cannula...the little tube that runs under her nose with 2 little prongs in her nostrils. Think your grandmother's oxygen...same thing...just tiny. She's experienced this once, for a full day and night...but then got tired and had to go back on the CPAP. Prayerfully soon she'll be back on it. When she's on this, we get to see more of her precious face!

OG Tube - Orogastric Tube...This is a feeding tube that goes down her mouth (or nose if she didn't have a breathing apparatus there) and into her stomach. They attach the tube of a syringe to it, and pour in my breast milk. Then they simply push it through, and it goes straight into her tummy. She was up to 6cc's every 3 hours. Before each feeding, they pull back on the empty tube, to see if anything comes up (aka Residual). Most times there is none, meaning she's digesting her food. But if there is any, they typically hold the next feeding to give her time to digest what's left. Today she had too much residual (and needs to poop!), so they decided to put in a...

TP Tube - Transpyloric Tube...This is a longer tube, much like the OG tube. Except this one goes straight into her small intestines, bypassing the stomach. They put this in today because of her poopy issues, giving her a break from having to digest food in her tummy. It takes a lot of energy for her to digest food, so this break will allow her to use her energy to process the food further down in her intestines and colon. And hopefully produce some poo! With the TP tube, she gets 1cc an hour over a 3 hour period. Then they wait an hour, and check the OG tube for residual. They want to be sure none of the milk has gone back up into her tummy from the small intestines. If there is none, they will resume, and give her 1cc an hour over a 3 hour period again. And the cycle continues. They will probably keep the TP tube in for a week or so just to give her a break. When they put it in, they did a tummy xray to be sure it was in the right place. And the xray confirmed that she is just "backed up" and doesn't currently have any signs of...

NEC - Necrotizing Entercolitis...The inner lining of the intestines contains millions of bacteria. Usually, these bacteria are harmless and are part of the digestive process. In NEC, though, the bacteria begin to attack the intestinal wall. If the disease is not treated promptly, the intestinal wall will weaken and may die. Eventually, a hole can form through the bowel wall (a perforation), spilling its contents into the abdominal cavity. Bowel perforation is a medical emergency that requires immediate surgery. But they will continue to watch for this to be sure it doesn't develop.

In other news...she did poop tonight (Thursday night) around 7p. They were about to give her a second Glycerin Chip, and right as they were about to give it to her, she pooped! It was a good poop, but she still needs to go more. Her tummy was still a bit rounded while we were there. Your prayers are working, so keep praying for poop!!

I did get to change her diaper tonight, and I was actually praying it would be poopy, but sadly it wasn't. Put I do love changing her diaper...I know I won't say that for long, so I'm enjoying it while I can!

PS - I think I have all of those terms and "definitions" correct, but I've only been to what Owen calls "Google Med School" so please don't hold me to it!!

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Sayla Grace is doing quite well. She is up to 1lb 10ozs...just 1oz away from her birth weight!!! However if she would poop, she'd probably loose a bit of weight.

They have started feeding her again, and they are up to 6cc's of breast milk every 3 hours. They accidentally gave her formula a few times, which I was upset about, but it turned out to be an honest mistake. They were just unaware that I had brought milk up there for her. But she's getting my milk now.

Last night her tummy started to look "loopy." Basically you could see her intestines through the thin skin of her belly. A "loopy" tummy either means that she's not digesting, has too much air in her belly from the CPAP, or that she needs to poop!

This morning her belly was "rounded," which was leading the nurse practitioner to believe that she needs to poop. She's been leaving "skid marks" (yes, that's what they call it!) in her diaper, but no big poops in a few days since she's been eating again.

So we really need her to poop!!! They can give her something called "Glycerin Chip" that is just a tiny piece of glycerin, used as a suppository in babies. They are talking about doing that today, if she doesn't poo soon. Please pray that her insides wake up and start working so she can poo on her own without the glycerin chip!!

In other news, she is now 13 and 3/4 inches long! So she's getting longer!! When she was born she was 13 and 1/2 inches long.

Also her lungs and brain are continuing to develop. Both her chest x-ray and brain scan this week came back normal. Well, her chest x-ray was actually "improved," so it's still a bit cloudy, but it's better than last week! Praise God for this!!

We can tell her lungs and brain are developing, because her Brady episodes are lessening. When I called to check on her at around 10a, nurse Lindsey said she had only had 5 Brady's since 11p last night. That is a HUGE improvement from where she's been over the past week!!

Overall she's continuing to improve, thanks to your prayers! Specific prayers needed right now are:

• Poop!!! Please pray that she poops out everything that's backing her up!! (Bet you never thought you'd pray for poop!!)
• Continuing development of her lungs and brain so she can be weaned off the CPAP and onto the Nasal Cannula.
• Continued growth!!

Thank you again for your prayers thus far. We thank God daily for those that are praying for her. We only wish there was more we could do to repay you. Your prayers and faith are the reason our baby girl is doing so well.

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For the first time since she was born, I got to have some good
Mommy/Daughter time with sweet Sayla Grace. Owen was hanging out with
friends playing golf and having some much needed "guy" time, and there
were no night time visitors tonight. So I went up to the hospital
alone, and really cherished my time with her.

When I got there, I said hello, and she literally kicked her box off
of herself. (She has a clear plastic box over her to keep her warm).
She kicked the box so hard that nurse Lauren had to catch it. We took
that to mean that she wanted to visit with Mommy without the box.

So the whole time I was there, we visited sans box.

I talked to her alot, played "This Little Piggy Went to Market" on her
sweet toes, and when it was dinner time I prayed with her and blessed
her food. I fixed her hair (it was sticking up in the back) and tried
to teach her to suck her thumb. She couldn't quite get it, but she
tried! That silly CPAP was getting in the way.

I watched the other parents intently. I watched the dad two bays over.
He and his wife were feeding their baby boy through a feeding tube.
But he's bigger, so they get to hold him while feeding him. The dad
sat there holding the syringe in the air for a solid 30 minutes, if
not more. His arm not propped on anything, had to be getting tired.
But he sat there, with the patience of Job, holding that syringe so
his boy could eat. Such dedication and love in his eyes.

I watched the parents across from us, trying to leave, but their sweet
girl cried each time they put her down. I could tell it was hard for
them, but they swaddled her up good, and she finally settled down. She
was quiet when I left after them, and I was thankful for that.

I watched sweet Sloane sleep soundly next to us. Never making a peep,
when all the babies around her were crying. She sneezed a couple of
times, and Sayla Grace and I said "God Bless You!" She just stared
intently at the room after her sneezes, and quietly went back to
sleep. We will miss her when she goes home this week, but cannot
express how happy we are for her and her family. In the 2 short weeks
we've known them, they have been such a blessing in our lives. Having
been in our shoes just 12 short weeks ago, it has been so comforting
to see how far they've come and have them to talk to. I hope Sloane
and Sayla Grace will be forever friends!

But mostly I watched Sayla Grace sleep. I watched her squirm through
the hiccups twice. Each time she made little cat like noises.

She's doing much better tonight. Her Brady episodes are fewer and far
between. Her chest xray was "improved" and her blood levels are
normal. Her Billi levels are up to 3.7, but doctors weren't concerned.
Overall they are pleased with where she is right now.

She'll have a busy day tomorrow with her head ultra sound, so I left
her sleeping soundly. I said her goodnight prayer for her, and blew
her kisses before saying goodnight.

My sweet Sayla Grace. She's gonna be ok. God was in that room
tonight. I could feel His presence.

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Overall we've had a good weekend. Sayla Grace has received a total of 2 units of Owen's blood, and her hematocrit level is back up to 40 (where they want it).

As a result, her Brady episodes are decreasing, and she's having them less frequently...though she is still having them. The nurses say it's normal that she have some, just simply due to her age and lack of lung and brain maturity. She should slowly grow out of them, as long as there are no underlying issues like an infection. Right now there are no indications of infection. We think the increase in Brady episodes two days ago was because of her low hematocrit levels.

She has had 3 poopy diapers in the past day. One good one tonight!! If you've been following along, you'll remember that the Billirubin is excreted in poop, so each time she poops, her Billi levels should decrease. They now only have one light on her, and we're hopeful that soon they can remove that one too.

Tomorrow and Tuesday are a big day for us. At around 6am tomorrow (Monday), SGP will get another chest x-ray. This is standard procedure for her age. The last 2 that she's had have shown that her lungs are hazy. While they expect hazy lungs right now, we want them to be clear!!

Also, on Tuesday (early in the morning), she will get a second ultra sound of her brain. Again, this is standard procedure, to check for hemorrhaging in her brain. It is also to check that there is no swelling, and that her brain is developing normally. The last one she had last Tuesday, came back normal.

Tonight (Sunday) she'll get a good sponge bath with the new soft washcloths that I brought her, and her bedding will be changed to some new blankets that I brought. Just trying to make things a bit more comfortable for her! I noticed that the hospital washcloths were so rough, and I couldn't stand the thought of her getting baths with them since her skin is so sensitive.

I have some great pictures from my new camera, but I haven't taken the time to upload them. I promise I will upload them tomorrow, so you can see her. Her hair is turning blonde (Owen was a blonde baby), and she's getting a few tiny fat rolls. Tiny, but there are little wrinkles!!

Specific prayers needed this week:

• Clear chest x-ray Monday morning
  
• Positive results of the head ultra sound on Tuesday morning
  
• Weight gain
• No more Apnea or Brady episodes (A&B episodes)
  
• Positive results of lab work Monday
• Peace and understanding for Owen, myself and our families
• Pray for those that are following our story and don't know God, that they will be touched by the evidence of God's grace in our lives and come to know Him.

We thank you for your prayers thus far. We really can really feel the effects of your prayers. Every day I get a wave of peace that comes over me, and I know it's because one of you has just prayed for us.

And I can't thank you enough for that.

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Just went to visit Ity Bit. She looked really good. Her color was
back, and she was resting very comfortably.

She has only had 2 Brady's today, and none while we were there. She
did drop her O2 Sats twice while I was with her. The first time she
did it, I gave her a pep talk and told her she needed to breathe! For
once she listened, and brought her sats back up.

Then, after I told her I was leaving, she dropped her sats again. But
this time the nurse had to increase her oxygen input a bit. Both times
lasted less than 30 seconds, so that's good.

They will get her hematocrit levels again in the morning. So far her
blood cultures haven't grown anything!

Pictures of her sweet feet when I get home!

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Just called to check on our Itty Bit (as I've come to call her). She
had 15 Brady's last night (29 total for the day). Several were Apneic
(sp?) Meaning she stops breathing as well. But her O2 levels are
still at 21%. (Room air)

She got a unit of Owen's blood because her hermatocrit levels were
low, so we're hopeful the blood helps cure the Brady's. They will
check her hermatocrit levels again today or tomorrow to see if they've
gone back up.

She's only had one minor Brady this morning. If she doesn't cool it,
they will put her back on the ventilator today. Please pray hard that
the Brady's stop (and that they find the cause) and she doesn't have
to go on the vent.

On a brighter note, she gained an ounce! She's up to 1lb 9oz.

Pictures from the week are below.

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I hate when my phone rings now. It seems we're on a downhill part of
the rollercoaster.

Just got an update from nurse Michelle...

Little Sayla Grace has had 14 Brady episodes today, some being Apneaic
(meaning she stops breathing).

They have run her CBC (complete blood count), blood culture and blood
gas levels. The only one that has come back is her blood gasses, and
they are normal. Please pray the others come back normal and there is
no infection

They have turned up her CPAP. It's now breathing for her 20 times a
minute instead of 5. It's also blowing a constant pressure of air for
her.

Her Hermatocrit level is also low (33), so she will need a tiny unit
of blood. Owen donated last week, and he is compatible, so they will
use his blood. We're prayerful that these low hermatocrit levels are
the reason for the increase in Brady's and with her Daddy's new blood
she'll bounce right back.

Please pray with us that this rollercoaster will start going back
uphill and our sweet girl will start to improve overnight.

We're on our way to visit now. If there are changes, I'll update again
tonight. If not, I will update tomorrow.

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Owen and I just went to visit Sayla Grace. When we walked in she was
just coming out of a Brady episode. Except this one wasn't normal. It
was several in a row, and the nurse had to vigorously stimulate her to
bring her back.

When we looked at her she looked pale. She has had 7 Brady's in a
matter of 3 hours. She has been having 6 or 7 in a 24 hour period.

We need immediate prayer that these episodes stop, and that area of
her brain develops to remind her heart to beat and her lungs to
breathe.

On a brighter note: The nurse had to check her vitals, so she took
off her CPAP mask and I got to see her pretty face. She held onto my
finger while the nurse took her vitals and opened her eyes as I talked
to her.

Then she smiled and made my day!

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Weight is up to 1lb 8ozs!!

Total of 7 Brady's yesterday, but this is less than she's been having.

Billi levels up to 2.8, but they now only have one light on her.

She looks great and is sleeping great (growth hormone works when she's sleeping)

Not much more to report! Please continue to pray for growth of her organs and for the Brady's to stop so she can come off the CPAP.

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Ok, so my brain is not functioning, but I think I get a pass given the events of the past week.

You'll read in the post (Grace in God) below that I said she has gained 10ozs. Obviously if you've been following along, I cannot do math.

She has gained 1oz. Not 10!  But an ounce is an ounce!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We went to visit tonight, and she has gained more weight!  She's now up to 1lb 8ozs!!  I got so excited when the nurse told me, that I made our next door neighbors cry!  Little Miss Sloan (our neighbor in the NICU) has been where we have been...she was born at 26 weeks weighing 1lb 8oz, and now she's up to 4lbs 10oz, and will be going home soon.  We are so happy for them, but sad as well!  We sure will miss them.  Please keep Sloan and her family in your prayers.  They are such a sweet family, and have really helped us in this past week to have someone who has just been exactly where we are. 

SGP's weight gain was the biggest change this evening.  They did do a chest x-ray today, and her lungs are still a "little hazy," but the doc said they expect that at this stage.  Please pray that her lungs clear and there is no infection.

Helen, her nurse tonight said they might run another CBC to check her white blood cell count on Monday, but she's not sure.  Please pray that her count is down to normal and no more meds are needed. 

She only had 1 other Brady episode this afternoon, so that's encouraging.  They were happening too frequently for my liking - even though the docs and nurses weren't too concerned.

Other than that, she's trucking right along.  She was sleeping so peacefully when we left that she made me tired!  Off to bed now!

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Last night we had a special prayer service at our church (Liberty Park Baptist) for Sayla Grace. It was very emotional, and extremely powerful. And the prayers are working! Here are all of the positive updates I got when I called the NICU this morning...

Sayla Grace's weight is up to 1lb 7.8oz!!! Praise the Lord for this! She has gained 10ozs!!!

Her Billirubin level is down from 3.1 to 2.4!!

Her Glucose level is normal!

She had a poopy diaper yesterday and at 3am!! I never thought I would be so excited about poop!!

She did have 2 Bradycardia episodes this morning, but the nurse said that was normal.

Nurse didn't have her white blood cell count in front of her, so we'll get that when we visit this afternoon. Please pray for a total miracle that her count is down to normal.

Since her last brain scan and chest/tummy xray was normal, they won't do them routinely. She'll get more as time goes on, but we don't know when yet.

Prayers are working!!! It is evident in today's report! Thank you for praying for our tiny miracle! Please also take time to simply thank God for all that He's done for us so far.

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Our precious baby girl was born one week ago today!

Many years before Sayla Grace was born, Owen and I devoted our lives to God. Little did we know how He would use us for the glory of His Kingdom. We are firm believers that God brought us together at the appropriate time, and blessed us with this wonderful miracle of life according to his plan.

We knew when we married that we wanted children immediately. And we began praying for our children when we married. We prayed daily and nightly, and soon we were blessed to find out we were pregnant. We continued to pray for this child, that He would bless her and bring her into this world according to His plan.

We could never have imagined that this would be His plan, but we feel more than blessed. Yes, it's scary, and hard to deal with at times, but we have put all of our faith in the Lord to get us through this.

As I reflect back on the past week, I have noticed that my own reflection is changing. I have been a Christian for more than 10 years, but I never realized the depth of my relationship with God until this week. He is my rock, my redeemer, and He is the reason I am able to hold my head up high and be strong for our daughter.

He has given me a peace beyond recognition, and He is protecting our child. This is all part of His plan, and we as a family will use this experience to change lives for His Kingdom. It would be easy to let the enemy in, and let him take over our lives at this point, but we have refused to let that happen.

This week has reminded me that every life is a precious gift, and we should take every moment of every day and use it to the glory of God.

I pray daily that those who are reading this blog, or praying for our daughter, are touched by this experience and lives are changed because of our Sayla Grace.

She is here to make a difference.

"A man determines his course, but the Lord determines his steps." ~Proverbs 16:9

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Today is a big day in Sayla Grace's little life. At 1:50a this morning, they did an ultra sound of her brain. This is to check for swelling and hemorrhaging, and to be sure her brain is functioning and growing as it should.

In a baby, there are extra blood vessels in the brain. As the brain grows, these blood vessels naturally hemorrhage, and sort of dissolve on their own. But in preemies, when the blood vessels hemorrhage, there is a greater risk that they will not dissolve, and that will cause bleeding in the brain and swelling. It simply happens because their little brains are not mature enough to make this process happen the way it should.

We won't have the results back until this afternoon, and it's agonizing to wait. But we've put her life in God's hands, and he will determine the outcome. We just pray that it is a positive outcome, and that this is an easy hurdle to jump.

In other news, her weight is down to 1lb 6.5oz. This is still ok, but it's going in the wrong direction. Please pray that she is able to put on some weight this week.

Her Billirubin levels are up to 3, (from 3.1) so this is a step in the right direction! Praise the Lord!!

Her cardiac ultra sound went well, and we got a positive result! Her heart and blood flow is functioning normally and looks good according to the doc! This was such happy news!

She is still on the Nasal Cannula, but last night and this morning she had a few Bradycardia episodes. "Brady" episodes are when her heart rate slows because she's not breathing at regular intervals. There are also Apnea episodes, where she stops breathing. These are referred to as "A&B" episodes.

Basically she stops breathing ("Apnea" episode) and her heart rate drops as a result ("Brady" episode). Since she's having the Brady episodes pretty frequently, they are going to put her back on the CPAP for 2 hours at a time. They say this is happening because she's simply getting tired. Her little body is too small to be able to support breathing on its own for long periods of time. This is a normal step, and the doctors kind of expected it. We were warned that this might happen. Please pray that she is able to grow so she can support herself in breathing on her own.

She's not had a bowel movement since the 30th, but they say this is normal because she's not being fed my milk anymore. Her tummy couldn't handle it yet, so they went back to the Pedialyte and Lipids, which really won't produce much of a bowel movement. We need her tummy to develop so she can start eating my milk again.

During our visit last night she opened her eyes for me and Mimi. She was very active and alert, and super cute!! She did have a Brady episode while we were there, and it was very scary. The nurse just patted her on the butt and I gave her pretty stern instructions to start breathing again!! She listened, and in just a few seconds (that seemed like years), she started back to her regular breathing. The little rascal is bound and determined to keep me on my toes!

We will visit this afternoon, and I'll be sure and update as soon as we have the brain scan results. Here's a quick list of specific prayers for Sayla Grace:

• Positive brain scan results
• Weight gain
• Billirubin levels to decrease
• Tummy to develop so she can start having my milk again
• No more Apnea and Brady episodes!!
• Peace and patience for Owen and me, and our families

Thank you for all of your prayers thus far. They are working, but we need not give up!!! Sayla Grace is a strong fighter, but she needs the Lord's help for her tiny little life to continue to succeed. We know everything is in God's hands, and he has a plan for her, so we have put all of our trust in Him, and are comforted by His grace.

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I'm sorry it's been a few days since the last update. We've been trying to get settled back at home, and get back into a routine.

Sayla Grace is doing very well. According to her doctor - "There are no surprises, except how well she's doing." She continues to take 2 steps forward with just one step back. We made it past the 72 hour "honeymoon" period, and she's still doing very well.

Here is the latest on her condition...

Her weight is down to 665 grams, or 1lb, 7oz. This is normal, and she might lose more, as she's allowed to lose 10% of her body weight. She started at 1lb 11oz.

They have taken out all IV lines, except the PICC line in her foot. This is such happy news, because I could tell the IV in her arm was bothering her.

They are feeding her my breast milk, just 1cc at a time. She has a feeding tube going through her mouth into her stomach, and they pump it through a syringe. Before feeding her, they pull back on the syringe to see if she has any "residual" - basically any leftover food from the previous feeding. If she has any, they give it back to her, but then they hold off on the next feeding. This is because her tummy isn't digesting properly. This morning she had some residual, so they are holding off on her feedings today until her tummy has time to digest what's in there. This is normal, but we ask that you pray specifically for her digestive system to begin working properly so that she can eat more. Eating means growth!!!

Her Billirubin levels are up to 3.1 (she's allowed up to 13-15 before they do an "Exchange Transfusion" and give her all new blood). So she'll continue on the photo therapy for now. Billirubin is excreted in stool, so once she's able to eat more, she'll poop more, and the Billirubin levels will improve. All the more reason for her digestive system to "wake up" and start working!!

And the biggest news of all, is that they are starting to wean her off of the CPAP, and onto the Nasal Cannula. This is the tube that goes under her nose with the two little prongs that go into her nose. Just like if you were to go into the hospital and need oxygen, it's just a tiny version. Today she was on the Nasal Cannula for 1 hour and was able to maintain her 21% oxygen levels!!! She then went back on the CPAP for 3 hours, and then another hour on the Nasal Cannula. This will be a weaning process, where they increase the Nasal Cannula time, and decrease the CPAP time, as long as she tolerates it!! Soon we'll be able to see her pretty little face all the time! PRAISE THE LORD FOR THIS!!!

Last night during my visit, I got to really interact with her. While she was lying on her stomach, I was able to put my hands on her back - covering everything but her head - and comfort her. Then, the nurse turned her over, and I took her temperature by putting a thermometer under her armpit and holding her arm down. After that I got to change her diaper!! It was so difficult, because I was nervous and she's so tiny. I was afraid I'd hurt her. But it was so wonderful!

And then I got to hold her. I was able to lift her up, and cradle her in my hands right over the bed. She cried when I first picked her up, but then when I started talking to her, and let her know it was Mommy, she calmed down right away. I could literally feel her melt into my hands and relax. It was such a surreal moment that I will never forget. Most mothers get to hold their babies the moment they are born, but having to wait 4 days was agonizing. I thank God that I didn't have to wait any longer than that.

As promised, here are some pictures. Some are hard to see, but you'll get the idea....

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