I smell like a giant 'colorin' crin.'

Translation: crayon. I smell like a giant crayon because I just colored for the last hour and a half with Noël. =) We made beautiful pictures! The smell just won't wash away. At least it's not onion, right?

Mike and I had a quick visit with sweet Flara today. Just 15 minutes each. Thankfully, we made it because we won't get to visit tomorrow. There are plusses and minuses to our Sundays. We had a longer visit with her last night. That was good! She has continued to look much better. She was awake for us, although she was starting to get very agitated. Not being fed was starting to wear on her. I just hate that. Her irritability made it hard to calm her down. She was really vigorous about her pacifier. She just wanted something to calm her hunger pangs! This morning, her irritability was even more present. I was able to calm her down just in time to switch out. I had one hand cupped around her head, and my other forearm and hand cupping her little body. She wrapped her little legs around my wrist (good thing I have skeletor wrists!) and wrapped her little arms around my hand and held on with her hands. I then used one finger to hold her pacifier in place. It wasn't the most comfy for me, but she loved the (non-holding) cuddle time. I talked to her while she was awake and listening to me, then sang to her when she fell asleep. My leaving brought on a fit for poor Daddy. He said she was upset just about the whole time he was with her. Thankfully, though, the doctors wrote that she may restart her feeds today. Although it's going to be a slow process to work back up to full feeds again, at least she'll be getting something.

Our visit presented us with quite a bit of good news. Her blood culture has continued to remain negative. That's great! Between the eye infection, UTI, and the GI tract full of air, that all together really did her in. She was able to have one antibiotic discontinued, so she's just getting a single antibiotic now. Although she's still on the same hat and 'gear' of the nasal-SIMV, the settings has been changed so she is just on CPAP. This means she's not getting 'puffs' of air anymore. She is just simply getting a flow of air with pressure. Yay! She has gone a few days without heart rate drops and oxygen-level drops. Perhaps she's turning the corner? We hope so! We are also very pleased to learn that Flara has reached the 3 pound mark! FINALLY! She is also now 16.2 inches long. Very big girl!

Between Noël and sweet Flara, we have the two cutest little girls in the world!

Since Mike, Noël, and I feel like we live in the car, we have just discovered something amazing that adds to our trip... The Pit Stop. SWEET! This little gem of a 'convenience' store is awesome. We've been eye-balling it for weeks and finally turned in last night. It's a drive-thru garage/ convenience store. The most amazing invention ever. I want to own one myself. And, I want the Tshirt that hangs in the bay... "Stop, Shop, and Roll." Yes! You drive through it like you're getting your oil changed. But, instead of oil, you are surrounded by drinks and food! Imagine driving your car into the middle of the store at the gas station, and someone walks over, asks you want you want, then walks and fetches your desires. Plus, added bonus, the Snickers bars have been fresh. Mmm, mmmm. If you don't understand the concept of a fresh candy bar, then you need to start eating more candy. =) Either way, this place is great. Especially when you have a little one in the back seat. I love not getting out of the car! I have seen the concept before in my hometown, but for livestock and dog feed. My dad would 'drive-thru' and have bags of dog food thrown into our truck for the beagles. The concept with snack foods (and smokes and beer if that's your heart's desire)... pure genius.

More infections.

Mommy's instincts were right. Our little girl is sick again. I just hate that it took 'til Thursday from my original inquiries on Saturday to get it worked out. She had to go back on antibiotics while the blood culture results are pending. We do have confirmation that she has both an eye infection and a urinary tract infection. Poor little girl. She has two different bacteria causing her troubles. She's getting an antibiotic eye drop that has been helping tremendously. Her eyes aren't nearly as puffy and looking like she'd been on the losing end of a fight. I imagine she feels better with her UTI getting under control. Her blood culture should come back this afternoon.

The day prior, little Flara looked really bad. She was pale, lethargic, limp, would barely open her eyes for us, and wouldn't grip my hand at all. We didn't hold her so she could just rest. Last night, with a good 24 hours of meds going in, she looked a lot better. She was given more blood, so she had color again. Her eyes were wide open for us, and she was in constant motion. Mike and I felt a lot better. Even though it's really hard to see her sick, we both separately in praying felt like our little Flara is going to be okay.

Flara did have to also stop her feeds yesterday. Her little belly really 'blew up' in size, so the doctors put her feedings on hold. Her abdominal xray revealed that she had a 'ton' of air throughout her entire digestive tract. Most likely, her OG (the tube that is supposed to evacuate air from her tummy) had drifted in too far, allowing the air from her nasal SIMV to push through into her intestines. When I was looking at her the day before, she was guarded about touching her tummy, so I know all of that air was causing her distress. Hopefully, the rest will help her out and she'll have no more trouble when her feedings are restarted. Flara's nurse today thought it could be tomorrow. In the meantime, Flara did have to go back on full IV fluids and fats. Restarting feeds is a slow process, so she'll be on IV-mode for quite some time. I really loathe the setbacks.

On a positive note, Flara has gone quite some time without having any heart rate drops and oxygen level drops. She's doing really well respiratory-wise. Hopefully, she'll be a new baby after these infections clear. We're hopeful she'll get to come off of the n-SIMV soon.

Mike and I had a wonderful mini-vacation right here in our great county. We had a friend treat us to watching 'The Miracle' in Pigeon Forge... our friend is over the whole production! (HUGE job!) It was GREAT! Our theater-going was our first date in nearly 3 years. We rode a camel (Mike's first!), took a backstage tour (very impressive), got free snacks (yummmm!), and enjoyed a very good musical. We have several friends in the cast, too, so it was really neat to get to see them in action. After the show, our friend took us back to the animal barn and let me love on Radar the Sicilian donkey. So cute! I told Radar that he could come live at my house when he's ready to retire. I think he liked me... or the animal crackers I was feeding him. =) We were also blessed by the staff at Riverstone Resort who provided us with a 3 day 2 night stay for nothing... just to give us a break from all of the stress in our lives lately. We were provided a massage and manicure, too. Wonderful! My dad so kindly drove down and stayed at the house to keep T-Boone the wonder dog and let Noël sleep in her own bed. Poor Grandpa... we told him she doesn't have stinky pants during the night and so he didn't need to change her in the mornings (because we would come right over). Well, when she woke up, she bombed her poor Grandpa. He didn't get to avoid diaper duty. =) During the days, we had fun swimming in the indoor pool (well, I hot-tubbed it). You can't beat living in a tourist town... there's no need to travel! It was hard to not be distracted, though, by our sweet little sick baby in Knoxville. Thankfully, our visits went well with her, and her wonderful nurses gave us updates when we weren't there. I am very thankful for my sweet hubby who arranged all of this, too.

So, my shout-out to support these great people... if you're in Pigeon Forge and need an awesome place to stay, I highly recommend Riverstone Resort (http:www.riverstoneresort.com). Also, be sure to check out The Miracle Theater (http://www.miracletheater.com/).

Please keep praying for us and especially little Flara.

Eyes and diapers and oxygen, oh my.

Flara was a whopping 2-13 yesterday. Mike and I figured she would lose quite a bit when we saw the size of her tummy. It was BIG! She hadn't had much stinky-pants-wise in the prior 24 hours, so we knew when she did decide to go, it would be major. Well, during our visit, she had two monster blow-outs. After leaving, she had a third. When nighttime rolled around and Flara hit the scales, she was back down to 2-10. Wow.

Flara has been struggling a bit with her weight gain. She'll gain 10 grams here, lose 10 grams there. Her fortification keeps getting moved up, but she's still not growing quickly. Today, the nutritionist was talking to me and mentioned Flara's 'poor weight gain.' Boo. So, she's getting an oil called MCT oil added to her meals three times a day. It will add 48 calories to her daily diet, so hopefully that will help her to beef up quicker. She's just a little pip squeak. We can't fault her for that. =)

Her primary today convinced the doctor to let Flara try some time off of nasal-SIMV again. She made it for five hours, then had to go back on. At least during the time, she had a nice break from all the crud on her head. It made holding her pleasant, and her primary took some great photos for us of Flara with Daisy Duck. I'll have to scan them in and post those soon. (Translation: Mike will have to scan them in...)

Flara had her second eye exam today. Although I was 75% asleep when R called me, I think what I gathered was that she appeared to have Stage I ROP, but the eye doc had said "I think she will be just fine." Stage I isn't bad, so I can handle that. =)

It's still raining here... lots. I like it. I'm still reading up on that contentment thing. =) See, yesterday was all good news, today just seemed a bit blah news. But, I have to keep learning to be content. I've been reading Hebrews to Noël during suppertime, so it's been very good for me, too. A good friend also Facebook-posted a video to me on our identity in Christ. That was VERY good.

A vast array of topics.

Little Flara was wide awake for her Grandmommy this weekend! She slept when Grandpa came to see her, although she did show him her feisty side. =)
Little Flara's teeny little preemie paci is as big as her face!
Very good Big Sissy playing in the waiting room (those are Grandmommy's legs).
Mommy holding little Flara.

Three days since my last post. Oh, lots have happened.

I guess my first report can be... ME! For four days this past week, I've been in lots of pain... progressing to TONS of pain. It began on my right side, underneath the area of my c-section incision. With each passing day, the area of pain began stretching farther... down my leg, up my stomach, around my back into my "flank" area... the kidney area. By day four, I was doubled over in pain and having waves of nauseousness ailing me. I also began having some more issues, but I'll leave that alone. =) While eating supper, which I was failing horribly at doing due to my discomfort, I had a "hit" of pain so hard that without warning, I slammed by hands down. In doing so, I dropped my fork and my knife. I didn't do it on purpose. It was an automatic response. With that, Mike announced he was calling the doctor. I refused. Of course, he called anyways. I walked away angrily because I was NOT going to talk when the call was returned. What happened, basically, was that I was told I had to go to the hospital... not Flara's place, which is where we were supposed to be heading in a few minutes. I was not happy. My visit to the hospital ended in all surgery-related and gyne-related areas being okay. Most of my lab work was normal. I did have some blood in my urine, so I had to get a straight catheter (thanks, Mike) to make sure the blood wasn't due to me being post-baby. The result: blood again. The ruling was that I most likely was suffering from a kidney stone, and possibly a kidney infection. Apparently, that culture came back negative, so we can most likely point the finger at the kidney stone. This was all Friday. It is now Monday night. My radiating pain has dissipated, although the original area is still throbbing and throbbing and throbbing. I described myself as feeling "like I've been kicked by a donkey." Funny thing, then my little sister today said, "Sis, this is like kicking a mule that's already dead." Ha! I'm *hopeful* I'll feel better soon.

My parents visited this weekend. That always makes me smile. I miss them, and my sisters, dearly. Diddy and Pickle hadn't been here in two weekends, so this was a long time coming. They arrived late Saturday night, so they missed little Miss Thang. She had a great surprise when she woke up Sunday morning to "Grangraw" getting her out of bed. And, of course, it also meant she had a bag of goodies... more "prehhh" jewelry, a Daisy Duck sippy cup, and two new T-shirts. Grandpa and Grandma took her shopping on their visit. Grandpa knows that shoes delight her as much as anything, so he took her to her favorite shoe store. She came home sportin' a new pair of slippers. She is so proud! She also loves the extra doggies their visit brings. Noël is a ham, so she had too much fun during their visit. She misses her naps, goes to bed late, but has a wonderful time showing off with singing, dancing, and accessorizing. Baby Sissy got a new very, very soft and cuddly sheep that plays nature sounds. It'll be very nice and calming for her while she's in the hospital. Naturally, due to the overstock of battery-operated Noël toys roaming the house, I was lacking the batteries to turn on Sheepy. Thus, I haven't delivered the present to little Flara yet. Her Aunties chipped in on that one, too, so it's a love gift from all her kin! =)

Our visits with little Flara were good. She was breathing... as in no 'apneic' spells. She's been behaving much better with her heart rate drops. She's having fewer oxygen level drops. Very big news... her PDA closed in her heart, so her murmur is gone! Her feeds were increased again, the pressures on her nasal SIMV and rate were decreased, she's gaining weight... we have a lot to be thankful for. Today, she topped out at 2 lb 13 oz. Although it's exciting to be nearing three pounds, she had three MAJOR dirty pants, so I reckon she'll drop some weight tonight. Oh, well! When we held Flara today, we were able to take her off the nasal SIMV and put her on the high-flow oxygen. That was very nice because it enabled me to do actual skin-to-skin holding with her. She, of course, loved it. =) She quickly fell asleep, and slept hard. She didn't stir when we put her back to bed, either. I am concerned that one level of her lab has been on the increase since Sunday. I trust the doctors (they did go to years of med school, after all!), but it just scares me. Please pray specifically that Flara won't end up with an infection.

Mike and I have been eye-balling some ornaments hanging in the gift shop. Although not on the cheaper side, we figured our little gal born at the University of Tennessee hospital needed a 'Volunteer' ornament. We try to buy an ornament for each year, so the girls'll have a collection by time they're older. We try not to make a big fuss about Christmas, but I like ornaments, so I like to get them for other people. Flara's is white with orange polka-dots with a little girl baby in the middle and the words "Born to be a Volunteer." The baby girl has a UT emblem on her onesie. Noël's is orange with white polka-dots. Orange is one of her fav colors. Her ornament has Smoky the dog on it. Noël is dog-obsessed, so we had to get her that one. It says "I'm a little Smoky fan." Noël gave a big caveman "oooooooooooo" when she saw it. That means she likes it. =)

Today, I received two BIG boxes in the mail of gluten-free goodies. So exciting! I had no idea who sent them, so I asked my Ma. She told me my little sister had done that for me. How kind! Rather than rationing out my treats, Noël and I have ransacked it. Royally. One item is a package of lemon wafers. I'm sure most people aren't a fan, but I've always loved them. After eating one, I told my Ma I would probably devour the whole box. I'm just about there. When I like something, I flat-out go for broke. There's a big discrepancy out there about the size of my stomach and the size of me. They don't match. I can eat with the best of them.

I know in three days I had more to talk about (that triggered my brain to sing 'Mister Rogers'), but I can't remember any of it right now. It's been wonderfully warm, the leaves are beautiful, it smells like fall (that amazing, acrid aroma in the air!), it's raining right now (so the steady drum of raindrops on my roof)... it's been a good weekend. Mike has one more workday for this stretch, so I am über-excited for that to end.

Keep praying. We're still in a battle, and right now, in this instant, we're feeling pretty okay. Emotionally, with my parents' visit and a couple good days with my girls, I'm feeling happier. I am still ultra-exhausted. Mike is, too.

I keep going back to a devotional study I'm going through (although not as regularly as I would like). It's by Charles Spurgeon. In it, he pointed out that even Paul (undergoing great suffering) had to learn to be content. Yes, LEARN. It doesn't come naturally. So, I'm trying to learn to be content in my situation. It's not an easy lesson, but it's getting through. The exact verse is Philippians 4:11. 'I have learned to be content whatever the circumstances.' That means good or bad, easy or painful, I need to learn to be content. Good reminder!

I'm off to bed, so have a good night.

Yesterday was a hard day...

In my prior post, I had talked about enjoying my chance to talk with a family in the waiting room. Interesting thing, I actually didn't want to talk to them. I was consumed in my thoughts about Flara. But, since Mike had mentioned to them that I was a NICU nurse, and I could see in their eyes they were hurting, I knew I needed to help them. I was sitting with my eyes glazed over in deep thoughts, staring 'through' the vending machine. I remember thinking, "you have such a short period to show Christ. Take it." So, I begrudgingly turned around and started talking. This led to an hour-long conversation until Mike returned and we went home. I knew from what they were saying that things weren't looking good for their baby, but we, as was everybody, were hopeful that their little boy would be okay. He and Flara had been born at about the same time, although he was older gestationally. He was born at 29 weeks and was now a 33 weeker. The family was from out-of-state and had to come via helicopter because her labor couldn't be stopped. The day prior, Great Grandma had told me, he was eating everything fine, doing really well. Less than 24 hours after our conversation, their sweet baby died. Shock and extreme sorrow flooded both Mike and me. I replayed my conversation. I hope I had done enough. I kept thinking, "why didn't I pray with them?" Thankfully, Mike did. Please keep this family in your prayers. He was their first baby.

This baby's death is a good reminder of the fragility of these pre-term babies. A good report one day is no guarantee that everything will be okay the next day. Mike and I have been on edge with Flara all week since the past weekend. Last night was no better. I am so thankful that despite our fears, we still have our sweet girl. I know in an instant, though, that we could be in a similar situation.

During our entire visit last night, Flara just would not keep her heart rate up. She wasn't gripping my hand the way she usually does. She was having temperature instability. Oxygen needs were increasing. It was really scaring me. Our nurse had asked the doctors about sending labs to check if she was getting sick again. At that point, they were still making a decision. Flara did wake up during the last 15 minutes of our visit. When she was awake, she did better. She was very bright-eyed, and seemed to really be listening to Mike and me talk to her. Even though she did wake up, I didn't want to leave. I told Mike I wanted to stay at her bedside all night. Even though we couldn't hold her, I just wanted to be there. Mike told me to stay, and told me he would get me in the morning. I decided I just needed to go home and rest. By time we made it home and settled into bed, our nurse called and said the doctors did decide to check labs, send a blood culture, and increase the rate on her Nasal SIMV. I was so thankful.

I slept fitfully, had dreams about my little girl, and woke up just at the time I could call the NICU. I was so thankful to hear that her labs looked perfectly normal, so there was nothing indicating an infectious process in the making. Also, Flara had not had any heart rate drops and apneic spells since 0200. She was back on 21% oxygen. Apparently, the rate increase helped her tremendously. She also had gained weight again and is now 2 lb 9 oz.

I still wish I could hit a fast-forward button on my life and set it for late December.

I haven't posted in a few days... I'll try to write more tomorrow.

In the meantime, Flara is doing okay. I won't say great, and I won't say horrible. We're just stuck in a bit of a rut, and the doctors seem to be disagreeing on what treatment she needs. One will put her on SiPap, the next will come and say, "no, Nasal SIMV," then the prior will come in and put her back on SiPap. That spells F-R-U-S-T-R-A-T-I-O-N for Mike and me.

Also, in asking one simple question, it seems that some people are taking offense to it. Hmmm... Don't get me wrong. We think Flara is in a great place, and they are taking wonderful care of her, but sometimes, people can be just funny. We keep reminding ourselves God is in control, and not to stress or worry.

I did appreciate an opportunity to talk a family through the frustrations, fears, and worry of their baby getting an infection and needing to go on the ventilator. Although I felt a bit like I was at work, I was glad to be able to explain a lot of what is going on and possibly calm their fears a bit. They were all a bit wide-eyed at the fear of what had happened today for them, and were confused in not knowing all the jargon being presented to them. I had a good hour to explain things in detail and relate our own experience to them. A little birdie had mentioned to them that I am a NICU nurse (thanks, Honey!), so they picked my brain while Noël entertained through dance, spinning, drawing, flirting... As I've said before, our experience is going to greatly help me when I do return to work. I have a whole new perspective on the NICU thing.

One last thing... little Flara Sophia is 31 weeks today, and turned one-month-old yesterday. =)

I'm going down, down, down in a burning ring of fire...

Well, okay, my mood, that is.

This weekend has been dumpy. D-U-M-P-Y. I'm not feeling very encouraged, and I'm struggling to be glad. Argh.

If something could go wrong, it did. Friday night, I froze all night. Seriously froze. I was so cold it kept me awake. I couldn't glean enough heat from Mike's half-dead body in the bed, and Dogg's half-dead body, either. Apparently, the cold didn't affect them. They both snoozed away beautifully. When we got up, we realized our furnace was click, click, clicking, but not turning on. Rats. Our neighbor came over that afternoon and checked everything out. All four diagnostic tests came back fine. It hasn't done it since. Why it struggled Friday night, I'll never know.

Saturday, Dogg was having fits... in his belly. I posted about his "conniption" on my last entry. Either way, he was wearing me out with his frequent need to go outside and make lots-o-noise. I'm not talking the barkin' kind, either.

Sunday. I hear strange sounds coming from my kitchen sink. Now, last time this happened, I forgot to turn off the water. This wasn't the same. This was BIG sounds coming from the sink... as I was pouring out an ENTIRE bin of soapy water. I heard it the night prior, although very minimally. I didn't think twice about it then. So, today. I hear the BIG sound. I wonder, "what could that be?" I ask Mike if he heard it. Nope. I poured again. I hear it again. It felt very much like the squirrel scene in Christmas Vacation. Mike heard it once, albeit briefly. I look down. Suds. I open the cabinet doors underneath the sink. Water EVERYWHERE. DEEP WATER. Everything was nearly floating. Mike hollers, "it's yours." Thanks. =) Apparently, the entire drain pipe disconnected. I had the downward pipe from the sink (I know, this is very plumber-term appropriate) with a straight shot to my cabinet. LOVERLY. So, being the handy type I am, I reconnected the pipes. Heck yeah! Then, Mike screwed the little screw part back onto the down pipe. Yeah, we're both quite talented. I'm very suspicious that one small girl, known affectionately as the 'crow,' might know something about this. My clean-up took every towel in the house. Even all of our washcloths, Noël-cloths, and hand towels. Fun fun.

Thankfully, though, nothing was of the money-fixin' type. Boy, would that have been bad.

Oh, gee... I'm forgetting my other mishap. I didn't make it to church. Why? Um, my keys were not in my car. I searched all over. I could not locate them. I checked pants pockets. I checked countertops. I checked in random non-suspecting spots within the car. No keys. Me Irish blood 'twas boiling. =) I had to talk myself down out of a bad situation. ie I had to talk myself from saying something very unkind to my hubby. Grace. Grace. Grace. All was well when Mike called me after my missed Grace Group. "What's going on?" Me: "Um, I have no keys." Mike: "Oh, I'm coming home." Me: "Okay. Bye." Apparently, the keys were under a little brochure Mack had brought home. Very easy spot. But, not the normal spot... IN THE CAR! Thankfully, God showed me grace and allowed me to not be angry and say unkind things to Mike. I didn't need to ruin my short time with my hubby.

So, next order of business. Beloved Flara. Dr. B calls again with a kind update. Basically, Flara has been failing her SiPap thanks largely in part to the ill-fitting mask. So, he wanted to try her on high-flow again. She failed that within half an hour. My poor little baby. So, she's on something called "Nasal SIMV." It's the cannula, but hooked up to the ventilator. She's not ventilated, so she's breathing on her own, but the machine will give her a puff of support with her breaths. I'm feeling discouraged because I feel like we've been in a backward slide for sometime now. I'm really afraid of the word "chronic."

Please, keep praying for us. Little Flara is tuckered beyond capacity from all of the overhandling during all of these adjustments and changes. I'm tired from the emotional strain of it all. Mike's exhausted.

Until next time...

Suzanne

It's too cold for October, but that has nothing to do with my post. Sort of.

Mike and I visited our little Sweet Pea this morning since Mike is working tonight. We were happy to hold little Flara... we were unable to last night because she was too chilly again. Today, she was really tired from too much handling as she's outgrowing her SiPap mask, so everybody (it seems) has been trying to make the mask work. Apparently, the hospital is out of stock of all sizes except for extra small and large. Hmm... not so good. So, she's had multiple readjustments of a mask that doesn't fit, resulting in a tired baby.

Because Flara was so tired, she just snuggled down with both Mike and me and slept. While I held her, she hiccuped nearly the entire time. I felt bad she was hiccuping, but those little squeaks are just too cute! I kissed her little fuzzy head multiple times. =) Lots of people ask me to give her a kiss on her behalf, so I spend a lot of time telling her "this smoochie is from Grandmama," "this kiss is from Cousin Caleb," "this is from your big Sissy," and on and on. =) She doesn't seem to mind, either.

Flara had her repeat head ultrasound yesterday. Her brain bleed was basically identical to her last scan a few weeks ago. Although her bleed had not worsened, it has not improved, either. On her past two scans, she was improving slightly. We don't mind, though. We are so thankful that the bleed had not moved in a negative direction. No news is good news, as I always say.

Her fortification of her breast milk was increased to 1 part breast milk to 1 part 30 calorie formula. This results in a net of 25 calories per ounce of "food." She has been steadily increasing weight, so the fortification seems to be working. Hopefully, the added calcium will help her little bones out, too.

She gained 10 grams last night, or 1/3 of an ounce. This puts her at 2 lb 6 oz. Mike and I were really excited about that news. She's almost to 2 1/2 pounds. That sounds like we're getting somewhere! She definitely looks rounder, and her little rump feels bigger in our hand. She still doesn't really have cheeks yet, though. There's a tiny line defining where the top of her little booty crack will be, then nothing more. =)

We were able to see her anger in action. Haha! Two nights ago, she had to have a lab draw. That little booger can really pitch a fit! After hearing repeatedly how feisty she is, I enjoyed seeing her in action. I don't want her to hurt, and I hate for her that she has to have so many lab draws, but that little fighting baby makes me feel better. Whenever she acquires an infection, she becomes really limp and the fight goes out of her. This helps us to see that she's feeling better.

We bought Noël a 'Big Sister' shirt at one of the outlet stores. She sure loves it! She had to point it out to the other folk in the waiting room at the hospital today. She had Dolly, her baby doll, and kept telling the people "baby" and pointing to the words on her shirt. That Noël sure is something!

I was quite proud of her this afternoon. I've been teaching her objects in her right-now-favorite book "Tugga Tugga Tugboat," and teaching her more detailed body parts than just "nose." After a couple days, she correctly answered in her book tugboat, ducky, bird, captain, baby, doggy, mommy, and "dada" as she calls all men. On herself, she showed me forehead, chin, cheek (both on her face), ears, nose, tongue, mouth, arms, legs, eyes, nose, bellybutton, tummy, and tootsies. The girl isn't much of a talker, but she sure understands a lot!

My mind is a bit blank tonight. That's a good thing. I've been wanting to go running here lately... running A LOT. When we lived in Chicago, I would go on one to two hour runs down the lakefront. I called them "numb my mind" runs, which were actually always my best times to pray and talk to God. I really enjoyed running my tail into the ground. Strange, yes, but it brought me satisfaction. I've been telling Mike lately I really need to go run myself into the ground. I just wonder how long I really need to wait. It'll be 4 weeks tomorrow since the infamous delivery from h-e- ummm, blah. As of two days ago, I officially could not see the remnants of my bruises on my forearm from my fight, although there is still a firm, sore spot. Yeah, I just need to go run. I need to get lots of things out of my mind. Like bruises, fights, fears, worries, frustrations, tiredness (huh?), work, money, schedules, ARGH!

My kin are partying it up at the good ole Ft. Vallonia Days. Sure wish I could be there! That's pretty much a tradition of my kinfolk. Fried fish sandwiches, elephant ears, persimmon pudding... corny wares to buy, nicer things to buy, a really long parade, axe throwing contests, hissing and popping of steam-run hay balers... man. Dodging old horse pies along the parade route (that the juvie's didn't completely clear off), yummy October weather, 5K road races. Oh, I could go on about it. As I told my sister, my plan had been to come and waddle around (NOT telling my OB I was traveling, of course), let Noël enjoy herself, and live vicariously through their eating of the things I so much love. I would just breathe deeply and pretend I was eating it. Funny things, those plans. =) Besides, it's really cold here, and I hear it's awfully cold there.

I've delayed my appointment with "Ole BP." I better get going. Plus, my dog's tummy is in a real conniption. It's been twenty minutes, and I'm sure he needs relief. Yet again. Poor ole Dogg. I wouldn't mind so much, but there's been an increase lately in dognappings going on. I don't want to send him out into the dark alone.

Thank you, again, for everyone who is following our little Flara Sophia and praying for her. We're still not out of the woods.

Goodnight.

Here are the holding pics...

This is me helping warm up Flara since she was cooled off from transferring beds. We *cooked* her to a snuggly 99.9. =) But, Daddy reaped the benefits and got to hold her.

Here is Daddy holding little Flara for the first time! Daddy's hands are pretty much bigger than she is!
Finally! Mommy was able to hold her, too, thanks to Daddy giving up some of his visit time. Flara absolutely loves her holding time! (As do we!)

I didn't think I had much to say.

It's still raining... but, I don't mind. =) It's been raining for days on end, it seems. Has it really? I'm not sure. Did it start yesterday, or the day before? Eh, it doesn't matter. Last night, leaving the hospital, the way the clouds rolled over the "city," and the rain drizzled down in a foggy haze, reminded Mike and me of Chicago. Eerily similar. The wide lanes of traffic (but only because we were merging!), the buildings of downtown (though much smaller and non-expansive), and the construction cranes gleaming in the darkness waiting for the workday to return (although only one, rather than dozens). But, still... the nighttime took us back to our days of living in ChiTown. Somehow, it seemed normal. Quickly, we were beyond the "downtown" and back in the darkness, heading down the stretch of interstate to return home... to reality. =)

We had visited with our little Flara again, and were able to hold her. This time, for a much longer stretch (okay, maybe by only 5 minutes because by time I got my hands on her, the nurse was suggesting we put her back). So, I kept her for maybe 15, 20 minutes, then had to remove her happily comfortable little body from my arms and put her back to bed. *Sigh.* I snuggled her down in her bed, and she peeped at us before we said goodnight. It was late anyways, and we were both struggling as much as she was to keep our eyes open, so we headed out with a new BP in hand (old BP was having some right-sided issues).

Flara had gained weight yet again! She went from 1030 grams the night prior to 1060 grams last night, putting our gal at 2 lb 5 oz. Finally, we feel like we're getting somewhere!

The doctor on for the day was kind enough to call me at home and update me on Flara's progress. Some days, I feel like I don't always know what's going on. Some docs tell us basically nothing. And I quote (honestly word-for-word): "You baby very sick. That all I say for now. Bye." Some docs tell us doom-and-gloom... not word-for-word, but basically, "there's still a very good chance Flara will not survive." Gee, thanks. To yesterday... a long, detailed conversation asking how I felt about her treatment, progress, any concerns, and included what this doc in particular was thinking. Thank you so, so much!

Here is what I gathered:

Because Flara had been making good progress in her advancement in her respiratory treatments, then seemed to be going backwards, this doc wanted to make sure there wasn't something more going on with her besides the infection. This was good news for Mike and me because we were both beginning to get a bit concerned. So, he ordered a chest xray to look at her heart and lungs. He wanted to make sure her lungs looked clear, which they did. Also, he wanted to look at the size of her heart. He wanted to make sure she didn't have slight enlargement because her murmur (PDA, to be exact) wasn't fully gone. That, too, looked normal. Thank you, Jesus! =) So, we could conclude then, that it probably was her infection causing her to backslide and progress somewhat slowly.

Also, he let me know that her original dose of vancomycin (her antibiotic) came back a little low when levels in her blood were checked. He informed me that he thinks that is why the bugs in her central line were able to crawl back into her blood, despite having been started on antibiotics. When the blood levels came back, he upped her dose of vanco. Problem solved! Her infection seems to be clearing up, and she's starting to go down on the percentage of oxygen she needs.

Another lab the doctors check, alkaline phosphotase (alk phos), came back high. Alk phos is checked because it gives an indication of bone health. By Flara's level being high, it tells us that her little developing bones need more calcium. Thus, he increased the fortification of her breast milk. Also, he added a multivitamin with iron to her daily schedule to help with her ongoing anemia. Despite multiple blood transfusions, her counts remain somewhat low. This is normal, though, because preemies (I believe I've said this before) aren't making enough new red blood cells to replace the cells removed when labs are drawn, etc.

Since a few weeks have passed since Flara's last head ultrasound, this doc also ordered a repeat for Friday... tomorrow. He wanted to check and ensure that her bleed was still stabilized, and is still moving in the "improving" direction (as it has been the past two scans).

He also increased the amount of food she is getting every hour. She now receives 6.4mL every hour, continuously.

Flara is still as cute as can be. We both anxiously await her coming off the SiPap. Again. The way the mask sits on her face, combined with the straps that hold it in place, somehow manages to compress her poor little eyes. Very quickly, they become swollen. I hate it. It had taken nearly two days for her swelling to go down when she was last placed on high-flow oxygen, so it broke my heart terribly when she went back on SiPap. It also causes a little pressure point on her forehead. It's all what has to be sacrificed in the name of survival, though. ... Not to be letting myself get sad, though.

Please keep praying for our girl and for us. Yesterday, we were both feeling quite down. I go through phases of "I'm okay" and not crying, to "I'm not okay" and everything makes me cry. That's been my mood the past couple of days. It didn't help, either, when we passed a nice couple in the hallway walking out. Daddy was lugging bags and a pillow, Mommy was lumbering and breathing through contractions on their way to deliver "normally" a healthy baby. Argh. I told Mike it just makes me sad that we won't ever get to experience that again... that we only had it once with Noël. That I'll never get to labor through with a baby, then have her handed over to cuddle for the first time. It's scheduled c-sections only for me from here on out. But, like Mike said, and I am always reminding myself... Flara's alive. She shouldn't be. We'll take any sacrifice we have to make to have her in our lives. (Wipe my tears... move on)...

In my last post, I said I'd have Mike scan in our photos of us holding little Flara, so I'll post them right after this post. They're a bit grainy because they were printed from a computer at the hospital (our nurse was kind enough to take the photos and print them). Flara at the time was 29+6 weeks and 2 lb 3 oz.

Good things and bad things

Bad: Flara's PICC (central line) infection has spread. Her blood culture grew out the same bacteria as was growing in her line. Grr. But, she's still on her antibiotics, so she hasn't taken any steps backwards. Her lab work still looks really good; she'll just be on her meds for a while longer. Also, it's still making her feel not as spunky as she usually can be. =( She's still on her SiPap, and didn't tolerate well an attempt to lower her settings. Infections can be real downers.

Good: WE HELD FLARA FOR THE FIRST TIME TODAY!!!!!!!!!!!!!! Can you sense my enthusiasm? Mike and I had to split our visit because we came during the day. I'm thinking Noël must be certain we go to the hospital just to get jelly beans and ice cream. I feel bad she doesn't know we go to visit her very own "Baaaay-beeeeee" as she says often. But, since we split the visit and knew we would be holding Flara today, I went in first. Our thought was that if only one of us were able, we would rather I hold her. So, I happily trudged in, but my Flara was too cold! She had been moved to another room (yay for the no isolation thing!), but the stress of it must've had the best of her. We opened up her isolette to the radiant warmer mode, pulled her close to me, and I sat and cuddled her while still in her bed. When my 45 minutes were up, we rechecked her temperature. 99.9! Well, guess who got to reap the benefits? Daddy! I really didn't mind. I went and swapped out with him. He asked if I wanted him to hold off. I replied, "no." I felt too strongly that our little gal needed to feel human touch to make her wait another day. So, off he went to hold our precious Flara while I took over Noël duties. We played in the waiting room, changed TWO stinky pants, frequented the vending machines, and ate candy. Meanwhile, I kept wondering how the holding was going. 30 minutes into Mike's visit, he comes racing wild-eyed into the waiting room.

Mike: "Go. Go hold Flara. I stopped early so you could hold her."

Me: "What?"

Mike: "I'm serious. But, go. You don't have too much time."

Me: "But, Mike. That's your time."

Mike: "Just go. R's still holding her so you can hold her. But hurry."

So, off I went... excitedly! I sat in the chair, and R handed me my precious little gal for the first time. Ever. In the 23 days she has been in the world. (Heart melted.) I think it was the quickest 15 minutes in my life. I kept watching the clock. I just didn't want it to end. I could've sat there all day with her. She's been looking bigger lying in her bed, but holding her, I felt how tiny she really is. There was no weight to her, either, as she lay on my chest. I had her little booty cupped in one hand, and the other over her little head. That booty felt like nothing. She buried her little head in my chest and let out occasional sweet whimpers. Both her little hands worked at my collar bones. It reminded me of a kitty working its paws. I imagine human skin must have felt so wonderful to her. She's always holding onto something in her isolette... her feeding tube, the IV tubing, her heart leads (to the monitor). It must've just been nice to hold something that felt alive. With my time up, I put her back to bed, and got to do something else for the first time. I kissed her sweet, sweet little head. Then, I kissed her again. Like holding, I could've kissed that little girl 1000 times over.

R took a few pictures for us, and then printed them off. I have to scan them into the computer, which means Mike is going to have to scan them into the computer. I'll post them as soon as we get them. =)

Mike and I drove home on clouds! Noël was happy, too. Because she always is. =) She had her paci, bubble blankie, and Duncan Doodledog. Can't beat that combo!

Besides holding, Flara basically was unchanged on her orders. Feedings remain the same, lab work unchanged, still at 2 lb 3 oz (although with a 10 gram loss last night), SiPap settings the same.

We do ask that you continue to pray for her diligently... especially that this infection would clear up. Also, that she would regain her strength and peppiness, and that her lungs would improve enough to advance on her oxygen support needs.

Please also pray for her upcoming eye exam. This should happen within the next week. Preemies are at risk for something called Retinopathy of Prematurity (ROP) from the use of oxygen. I could give a long explanation here, but I won't. I'm not sure how much any one really cares about the details, so I'll give an overview. I feel like I'm instructing parents at work! =) The basic gist is that lots of oxygen causes vessels in the eye to constrict, which causes them to produce more vessels to compensate... too many vessels can damage the retina... in short. That's the quickest I can explain it. Either way, the retinal damage can be none, minimal, on up to severe enough to cause blindness. Flara has always had minimal oxygen requirements, so we have no concerns. But, it's always good to keep praying.

Also, as she nears 32 weeks, she'll be meeting with a variety of specialists. She'll have consults with a speech therapist (preemies develop things like oral aversions that get in the way of their ability to nurse/ take bottles, so the speech therapist will assess her and tell us how we can help her develop... although the girl happily chomps on her paci, so I doubt she has any aversions!). Also, physical therapists and occupational therapists will be meeting with her as well. Without the confines of the uterine environment to kick and move against, the babes sometimes don't develop muscle tone like they should, get stiff, and sometimes develop shortened muscles from only laying one way or the other. Torticollis... now there's a 50 cent word, and it happens to be a word I like saying! It's shortening of the sternocleidomastoid muscle. Whew! Anyways, things like that happen from not being in that happy fluid-filled world. Of course, there's lots more to it, but this is my short, generalized explanation!

I feel like I just wrote the "Beginner's Guide to the NICU," so I'm going to leave it for now!

Oh, one last thing... I took a wonderful hot soak in my jacuzzi bath last night. My first since everything happened. It was wonderful. I stayed for nearly 3 hours!!! And, I started and NEARLY finished a book. =)

So, that was a good start to good sleep that lead into a VERY good day.

Another day, another missed visit...

...makes for a sad, sad mommy. =(

It's tough on the days when Mike works. He gets home late, so we tend to sleep in. Sleeping in makes it impossible to make it up to the hospital in time to see little Flara. Oh, how it kills me! Tomorrow, we're getting up EARLY so we can go see our sweet girl. I can't wait!

After her weight loss over the past few days, Flara reached the 1 kilogram mark AGAIN! Hooray! So, once again, she is 2 lb 3 oz. That's my big girl! Plus, I hear she had a rather large stinky pants. =) On her own, too! Whoa! That's a big accomplishment! Oftentimes, those little preemies need a little assistance in sitting on the potty.

Her lab work still is improving, and she seems (from what I'm told!) to be feeling better. I'm so thankful her latest infection was caught early.

Tomorrow, too, she comes out of isolation! We need to blow horns and throw confetti for that one! She has been in isolation for TWO weeks now. So exhausting! Because she had a positive flu test, she had to go into isolation to protect everyone else from catching her bugs. So, we've been wearing gowns, gloves, and a mask for every visit. Her poor nurses have had to wear it lots and lots. Argh. We will ALL breath much easier come tomorrow! Originally, we were told one week, then the Infectious Diseases doctor from the nearby Children's hospital suggested an additional week. That was a big disappointment, but we agree that everyone needs to be kept safe. It's so contagious, an entire nursery could be infected in a heartbeat. Thus, we're not complaining!

On another note, I feel like the Mayfield Dairy truck. Yep, lots-o-bottles of milk are residing in our home right now. The hospital has LOTS. We have TONS. There are frozen bottles stashed EVERYWHERE within our freezer. I don't want to cook at times because I have to swim through the bottles to get to the food. Mike calls the little bottles "mini kegs." Yeah, sometimes he's a goober. =) But, then, I've been called a nerd a number of times here in the past couple weeks. It makes me wonder, sometimes, how BP hasn't broken down yet. And, speaking of BP! Noël decided yellow wasn't simply enough for BP. She brought out her "colorin' crins" and adorned BP in swirls of purple and orange. Soooo beautiful! I'll be breaking out my Mr. Clean Magic Eraser before I return BP to the hospital. Not so good to be returning a rental marked up in color.

On a much more serious note, I had previously mentioned my coworker's grandbaby Gracie. Please keep praying for her as well. She's really in a fight for survival- she was placed on an oscillator and on nitric oxide. These are serious forms of intervention. Her head ultrasounds have looked good- no brain bleeds, so we are very thankful for that. Her mommy and daddy did get to change Gracie's diaper for the first time. =) Please pray for them as well. I know how Mike and I felt in the first days of Flara's life, so I know the emotions they're going through as well.

Still... abiding in Christ,

Suzanne

Not much to report today, 'cept I don't get to see my sweet girl.

Flara did well through the night and today on her SiPap. She only had one time where she dropped her heart rate and one separate event where she dropped her oxygen levels. The doctor decided to go ahead and give her more blood to help her with the events she had been having the day before... and to ward off more from happening. Her red blood cell count wasn't too horribly low, and hadn't changed much since before her last transfusion a couple days prior, but he thought it would be good to give her a little extra help.

Flara's feedings were increased to 6mL/hr... still running continuously via the feeding tube that runs into her small intestine. The amount of fortification was recently increased, too, to help her fatten up a bit quicker.

Flara's infection continues to improve. Her lab work looked much, much better today than it had the past couple of days. Although antibiotics are helping to reduce her infection, pulling her central line gave her a big boost in getting better faster. I'm very thankful the doc made the decision to go ahead and take it out. =) One of her antibiotics was discontinued, so she's only on one now.

Her current weight last night was 970 grams. She lost another 20 grams last night. Combined with the 10 gram loss the night prior, she is now at 2 lb 2 oz. This is expected, though, since she's been sick and fighting infection.

A friend at church brought Flara a very pretty homemade hat and blanket today! So sweet! Noël quickly grabbed the blanket out of the bag, announced "baby," then spread it out on the floor at church. The girl was ready for a nap! Unfortunately, the floor isn't too comfortable, so her nap was a failure. She's happily sleeping her afternoon away right now! (Which is what I need to be doing, too).

For some strange reason, I woke up this morning in a jolt at 0330. I lay WIDE awake for half an hour, then decided to get up. I spent some quality time with my good friend BP, then sat in the darkness on the couch for quite a while longer. Since I was awake, I used the time to be in prayer for Flara, a coworker's new grandbaby Gracie (born at 28 weeks gestation), and my family. When the clock hit 0530, I decided I needed to try to go back to bed. That wasn't so successful. I don't know how long I lay awake in the dark, but I finally conked out to be abruptly awakened by the alarm clock (I think that's what it was- maybe Mike?). Either way, it just didn't seem like nearly enough time. I was very exhausted at church, and still feel like a zombie!

VERY quick update.

First off, Noël is in for some serious competition. Look at the happy, pretty face on that little girl! We just love her! Mike and I are in for some trouble because we have two beautiful daughters! haha!

Her infection was found to be coming from her PICC (central line), so it was removed today. Thankfully, the infection was not found to be throughout her blood. Thank you, Lord!

Still no holding. Sniff sniff. We're trying our best to be patient and look out for Flara's best interests. We know we'll have plenty of opportunities ahead of us.

The doctor made the decision to put her back on her SiPap today. I say "boo," but, if she needs it, then I'm not going to complain. She was dropping her oxygen levels too frequently and too deeply to necessitate going back on for a short time.

Flara had her very first bath last night. She had some sweet, fluffy hair! So cute! The picture is her post-bath. =) Seeing her clean made her Mommy very, very happy. Thanks to her wonderful nurse!

Flara lost her umbilical cord today! Hooray! We were beginning to think it was NEVER going to fall. Just kidding- we know it would, it just seemed to take forever.

That's it for today. Hope you're all having a great day. =)

We finally can see her pretty little face!

Despite Flara's most recent infection, she is still continuing to do well. We had been hopeful yesterday that she would be able to come off her cpap and move to a lesser form of oxygen support. When we received word that she was getting sick, we sadly resigned ourselves to having to wait longer for her to be taken off cpap. I called in the afternoon for an update, and was greatly surprised to hear that the doctors decided to give her a try anyways! At the time of my phone call, she was three hours into the high flow oxygen, and was doing well. Praise God! Even more exciting, Flara's move to high flow meant that we would actually be able to hold her- out of the isolette- and do skin-to-skin holding with her. The doctor on for the day had not hesitated in saying "yes" to us getting to try holding. I was so excited, I started crying. Every time through the evening, I was getting teary-eyed thinking about holding my sweet, nearly 3-week old baby for the first time. I called Mike at work and told him, too. He was super excited! We were both like giddy little kids on Christmas morning. Flara's nurse told me she was so excited for us, as well, to get to see her pretty little face without all of the equipment blocking our view. Quite honestly, I didn't really know what she fully looked like. I had that very quick glimpse as she rolled past me on the way to the NICU shortly after being born, and in that short moment, I thought she was such a pretty little gal and that she looked just like her big sister.

We were a bit nervous, though, about holding her when she was in the midst of getting sick. Some of her lab work had come back a good bit elevated. She had to go through having a blood culture drawn, a culture of her central line taken, handling to switch her to her new oxygen... it's all a lot when you're a little person. Even though we know to expect setbacks just when everything seems to be going so well, I still took the news hard. The night before, while visiting her, (as I previously posted), I thought she seemed not-quite herself. She was less active than usual, was requiring much higher oxygen than she typically needs, was having more heart rate drops, and her fingers and eyes looked puffy. We visited for over an hour, and all I could do was sit and pray over her. Nonstop. I cupped my hand over her little head, and over her little body, and just kept praying. I felt very prompted to do so. Quite honestly, some nights I say short prayers and spend most of my time talking to her so she knows that Mommy hasn't completely left her (I am always saddened to think how she must feel suddenly having Mommy and Daddy's voice gone), but I barely said a word out loud. Silently, I just talked and talked to God to protect her. When I received a phone call from her nurse early the next morning, I could tell instantly in her voice that something was awry. She said, as she always does, "Flara's fine, but I want you to know her labs looked off this morning." Heart dropped. I knew that would probably be the case, but I just hated to hear it.

When Mike and I were on our way to hurriedly and unexpectedly drop Noël off with some friends on our way back to the doctor's office the day chaos broke loose, I was fighting tears and fighting fear. I knew how serious and the implications of a positive fetal fibronectin test, and I was sitting in shock and disbelief that this was happening at 26 weeks. When we pulled into our friends' driveway, *A* came out of her door, tears in her eyes, hugged me, took Noël, and handed me an index card. On it was written John 14:27.

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."

I read it over and over and over again on the drive to the hospital. I've kept it in my purse since. Periodically, I pull it out and reread the verse. Again, with the news of her infection, I'm rereading the verse and trying to hold onto God's word. I have to remind myself, as through the past month, that God's sovereign and that all things are for His glory.

When we arrived at the hospital last night, Mike and I were so thrilled to see little Flara. She is so cute! I imagine her little head feels better without the *stupid* mask on. She was beginning to have skin breakdown on her forehead, so I was really glad, too, for her skin to get that cpap off. I just stared at her. Her little lips are very shapely, much like her big Sissy's. She's got those high cheekbones, little round cheeks, the marks of a double chin, arched eye brows... again, just like Noël! One thing, though, is that her eyebrows and eyelashes are VERY blonde. Her hair is a bit darker, the same color as Noël's at birth, actually, but those lashes! I don't know if she'll end up fairer haired than her sister or not! =)

The other thing we noticed, though, was how tired she was. Although she's always catching flies while she sleeps (just like all the girls on her Mommy's side of the family!), her little mouth was really gaping open. She looked worn out. Mike and I, being the two giddy kids and really anxious to hold her, looked at each other and decided we just couldn't bring ourselves to get her out and hold her. [Very big SIGH.] It just seemed like it would be too much stress on her already over-stressed little body. We'll always have plenty more opportunities. We still had a good visit. It provided me much relief seeing her, too. Despite her sickness, she still looked really good. Her color was good, she was waving her (impressively muscular) leg around, and had a nice wakeful period while we visited.

Follows are two pictures we took last night. Flara, here, is 29 + 1 week gestation. In the first, Flara is sucking her tiny little thumb. Although the picture doesn't show it, she did so with much fervor! In the second, she was peeping around listening to Mommy and Daddy talk. You can spy the impressive muscles (haha!) in the second picture. The girl is all limbs... most people who have seen her pictures are pretty confident she's going to be a runner like her Mommy! (PS Sorry the pictures are a bit dark. We don't use the flash because we don't want to bother little Flara.)

Another big moment for Flara is that she made it to the 1000g or 1kg mark! That is seriously a big girl! It's still considered 2 lb 3 oz, but she had gained another full ounce despite being sick.

This morning, I received another good report. Flara had no more heart rate drops through the night or morning, was still doing well on her high flow oxygen, her lab work was on the upswing, and she is still tolerating her full feeds. She was moving around well, although the nurse did say she still seems to appear to not be feeling well at all. Tonight, I think we'll probably hold off still on holding her. Sadly, we have a busy weekend with Mike's work schedule and church, so after tonight, we won't get to see Flara until Monday. I'll try not to think about that one.

Her good reports in spite of her infection is a good reminder to me. Every time something goes awry, I get nervous and the fear starts building within me. I tell myself over and over again to keep trusting God and to trust in His plan for Flara's life. I struggle, though. Then, I get these reports that she's still fighting and doing well. I sit and think, "why do I doubt?" "Why do I worry?" Even if she wasn't doing well, I shouldn't doubt and be filled with worry. God has never turned His back on me. Why would He now?

Quick update... Please, still be praying without ceasing.

Flara's lab work came back this morning indicating that she is fighting another infection. As I have said before, infections will continue to be one of her biggest battles as she grows up. This goes to show how quickly her status can change, and how fast infections can hit. She's back on antibiotics, and a culture was taken from her blood and from her central line to identify what bug she has and also the potential source of the infection. So far, she has been doing okay still. However, last night at our visit, I thought her eyes and fingers were looking a bit puffy. She also was up on her oxygen requirements, so the lab changes just verify the changes we were seeing. Please, continue to pray fervently for our little gal. This is also a good reminder to not become complacent in our diligence to pray because she has had so many good reports.

Still, abiding in Christ. Thanks so much. =)

Oink, Oink, Little Piggy... And, Mommy's Going Crazy!

Little Flara gets the "oink, oink, I'm a little piggy" award for the night! Apparently, she gained a whopping 80g, which is almost 3 ounces. Can I get a hog call out there?!! This has bumped her up past her birth weight to a big ole 2 lb, 2 oz. Whoa! Now, I know, these random big gains happen... like when the babes don't have big diaper blowouts the day before. And, Flara didn't have any monster stinky pants the day prior, so once she goes, I'm sure she'll lose some weight... but, still... it just sounds exciting! =)

My little beauty was wide awake once again when I saw her today. I just love it! She had a slight increase in her lab work two days ago... in the numbers that could indicate infection (I won't go into details... if you don't work in a NICU, the numbers would probably mean nothing!), but today, they were back to ZERO! Praise God! She had a stressful day during the 24 hours prior to the lab work, so I knew that it could have just been a response to the stress on her body, so I was really praying that was all it would be. Infections are among my biggest fears for little Flara, so I'm super thankful for today's report.

She's now up to just over 3 ounces total of breast milk a day. Wow! At the rate we're going, she might be getting her IV fluids turned off soon. She's getting her IV fluids through a central line inserted in her forearm, so the sooner the line comes out, the better. Anything inserted into her skin is a potential portal for infection, so we'd like to see that come out... SOON!

So, then, why is Mommy going crazy? Who knows! Perhaps the lack of sleep! Today, well, just now... I kept hearing this strange little "plop. sploosh. gurgle." sound coming from my kitchen. I couldn't figure it out. After a LONG while of hearing it (because it continued on while I readied Noël for her nap, changed a big bomb of a diaper, emailed a letter for Mike, then began to check my facebook), I finally ventured out to find the source. Oops! I had left the water running in the sink. Ha! I had turned it on only slightly to let it warm up to wash the parts to Ye Olde Breast Pump, or BP (not in the British Petroleum sense either!) for short. My thought was that by time I had Noël in her crib for her nap, the water would be warm. Well, I forgot. So, the water ran steadily for probably a good half hour. Oh, well!

My other crazy-brained things of late include making myself food, putting it on the table, and forgetting to eat it. I have readied the dishwasher, then walked away and forgot to turn it on. I would only realize my mistake when I went to get a clean dish, but only after thinking someone had already emptied my clean dishes and reloaded with dirty. I have put things in the fridge that go in the freezer, and I've put things in the freezer that go in the fridge. I've walked away from breast milk on the counter (yuck!), forgotten to feed the dog, misplaced my nursing bra (which I still haven't found), and have nearly eaten glutinous foods (that's gluten, not glutton!) because I've forgotten that I can't eat those things! I have a whole list more, but, I've forgotten that, too! Eek. If you know me well, you would understand why this is frustrating! I live in a very organized little world of mine, where everything has its place (and sometimes labels... for others to follow my lead). Yes, I've been told I'm a bit OCD at times... but, not right now! I'm downright crazy! =) Don't even ask me how long Noël went without a bath or getting her teeth brushed! My poor, sweet girl! No worries, though. I realized that oversight and promptly took care of it. She is clean and scrubbed!

Wide Awake Baby and the Booty Appears!

Mike and I rushed to the hospital today to squeeze in a very quick visit before Mike had to go to work. If we didn't make it, Mike would be going on three days without seeing his little girl. When we arrived, we had about 35 minutes before we needed to get back into our car and make our near-hour drive home. Whew!

Since I have been with Flara the past two days, I told Mike to go first and take the majority of the time. I asked him to leave me with just five minutes to go in and say "hi" to my sweet baby girl. Noël and I played in the waiting room and bought Junior Mints out of the vending machine. Noël thought the vending machine was pretty cool! =)

Mike returned beaming and announced to me that Flara was growing her hiney! That rat changed her diaper! I was glad for him, though. I was able to change Flara's teeny tiny little britches when she was two days old, and poor Daddy has had no opportunity before today. He was quite tickled. Last time he saw her little preemie booty, she had no cheeks AT ALL! We had a good laugh that Flara is fixin' to be like the rest of her family. That's where all that good breast milk is going!

I snuck in for my quick hello... that little gal was WIDE awake! I have not seen her with her little eyes open for more than just quick glances. Today, she was as wide-eyed as she could be. When I spoke to her, those little eyes would turn and her little forehead would wrinkle. Awww.... she melted my heart! I talked to her and held her little hand. I checked the clock. Time up. I stayed a bit longer... five minutes. I was hoping she would go back to sleep. Still awake. I lingered still. Another five minutes. We were ten minutes past our time to leave, so I decided I'd better scoot. Oh, it tore my heart in pieces to leave her in that sweet, quiet wakeful state. Thankfully, her nurse was in there, too, so I wasn't just leaving her alone. The nurse had tears in her eyes and told me she understands having had a 29 weeker herself, and knows how hard it is to walk away. I really appreciated her openness. It's nice to know someone understands how Mike and I are feeling.

When I returned to Mike and Noël, I told Daddy that she was wide awake. His response was the same as my response to him changing her diaper. We both had, "what? not fair!" responses to each other's visit. We hurried home, and made it in time. Mike left for work at his usual time, so no undue stress was added to our day. =)

Speaking of diapering... Noël has been really good lately about telling us when she goes potty. She pats the front of her "panties" and says "di, di" and will go to her changing table. However, since I have been unable to lift her, I have been changing her on the floor. The other day, she decided to really help Mommy out. She climbed up on the bench in our living room, lay down, and held her legs up. I realized she was laying there for me to change her! Such a sweet girl! So, that has become her temporary changing table. It amazes me how much her understanding is of the changes in her life. With my parents in town for the weekend, Noël took her diapering to a new level. She declared 'done' after eating supper, so we let her down from the table. We heard a little ruckus in the living room. My dad peeked over and started to chuckle. He told us to look at Noël... she was changing the diaper of Dolly her baby doll. Sure enough, she had taken a seat in her camp chair, which was pulled up to the bench. She had Dolly on the bench with the wipes box. She pulled out a wipe to clean Dolly, then was working with one of Flara's preemie diapers that we had brought home for Noël to see. It was the sweetest thing ever! I helped her put the diaper on Dolly. She gave the pat of approval! =) I just love that girl!

I know Noël will be a great big sissy. That's a 'great' big sissy... not a 'great big' sissy. =) She is always very helpful with Mommy and Daddy, whatever we are doing. She loves babies... she kisses, hugs, and holds her baby cousins. She loves to say "baby" every instance we see one. She'll point to Flara's pictures and tell us "baby." We had to quit telling her about 'baby' in Mommy's tummy. I think that was confusing at first. When I came home from the hospital, she would still lift my shirt, point to my belly, and say "baby." It took a few days of telling her 'baby' was now here and showing her Flara's pictures before she quit looking for the baby under my shirt. I can't wait for her to see little Flara. That's a long time coming, though, so we'll just have to be patient.

The doldrums have officially set in...

As I wrote earlier, Mike returned to work yesterday, but my parents have been in town. Tonight, Dad and Mom left to return to the Hoosier state. I lasted approximately 5 minutes before the tears started pouring. And, I haven't stopped yet. =(

I've been reading and rereading everyone's comments on here. I sure do appreciate that there are so many of you who are posting encouraging words to Mike and me, and that you are all praying fervently for our little Flara. I would like to have something better to say regarding your kindness, but I can think of no other words than to say I'm truly humbled and thankful for all of you, and that I love you all!

Dad and I went and visited little Flara this afternoon, and Mom and I went LATE last night! Both were very good visits. I sure do love that little girl, and I'm getting increasingly anxious to get to hold her and love on her. I'm getting anxious for her to get off of her CPAP even though I know she needs it. I'm having an antsy moment, and I'm sure there must be a correlation between my feeling discouraged and being in the midst of my doldrums. I have been constantly reminding myself of God's hand and sovereignty in her life today, and pretty much prayed over her the entire hour I visited with her this afternoon. But, today is a struggle... my reminders to myself seem to be going without being heard. I know it's not true, I know I need to cling harder, and I know that it's when I'm weakest that upon God I am most dependent.

So, I'm reading 2 Corinthians 12: 9,10 to remind me of what our Father says about this:

"(9) But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. (10) For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong."

Problem Solved and Good News! =)

The good news is that Flara's report on her brain breed came back positive! The bleed is continuing to stabilize and improve (she's reabsorbing some of the blood). We are still at a Grade II bleed, but she's getting better. Thank you, Lord!

My problem with the night nurse situation was solved by our very good day primary, "R." She talked to the charge nurses for us and worked to find us an additional primary for the night shift to cover when Flara's other primaries are not on. We met "K" on Friday night, and felt very pleased and secure with her as Flara's nurse. She had our little gal Saturday, and will be back tonight. Our personalities meshed immediately, and she is very good with our little gal. Mommy can sleep better now! =)

Flara is still doing very well. She's all pink and rosy after her transfusion on Friday. Her little arms and legs were flying once again... that's my girl! I hear she's giving the nurses a hard time when she needs care... that she's quick to voice her opinion about everything. My response was, "Give'em heck, little Flara!" Not that I want her to be difficult, but I like to hear that my little pee wee is giving a good fight.

Today marks Flara's two week birthday. I can't believe it's been two weeks already. Just a couple hours ago at this time on her birthday, I was seeing my little baby for the first time. Boy, was that a flood of emotions. And, yet, still is. Today was my first day back at church in three weeks (a combination from bed rest, delivery, and overall exhaustion). It was so good to be back, yet I was so distracted. Yesterday was Mike's first day back at work. *Sigh.* So many changes have been happening here in the past few days. Thankfully, my Momma and Diddy were here this weekend, but they'll be leaving tonight. Tomorrow, it will probably all really set in... loneliness that Mike's back at work, sadness that without him, I can't visit Flara, simply resuming a "normal" life (if it can be called that). Today reminded me that I only spent two Sundays in maternity jeans, and yet, today, I was back in my regular clothes. Kind of sad. I'll be packing up my box of borrowed clothes and sending it back with my parents today to return to my little sis. There are just so many things to reflect on. But, I'm not going to get started. Well, I sort of did... so, I'm going to stop here before I work myself up into tears. =)

Frustation!

Mike received report today that Flara, who has always needed 21-24% oxygen, suddenly overnight needed 35-40% oxygen. This raised my curiosity because it's completely out of character for Flara. So, I called back this afternoon to talk to one of Flara's beloved primary nurses whom I trust. I wanted to know if she had any explanations given to her from the night nurse. The only information I knew is that Flara has not been getting her primaries on the night shift, except only occasionally, and she had a newer nurse last night. Hmm... The purpose of primaries is that they, in taking repeated care of a baby, get to know that baby extremely well. So, if something happens and seems uncharacteristic, they are able to better identify and troubleshoot what is wrong. Also, it allows for less stress on parents because we form bonds with these nurses and come to trust them. So, I asked our day nurse if it was a matter of Flara getting sick (always a possibility), or the chance that this newer nurse, not knowing Flara and her typical little oxygen drops, just kept cranking up her oxygen. She expressed to me that she believed my concerns over the gal being newer and not knowing Flara probably had more to do with it than anything. She told me that when she came on, Flara's cpap mask was not very secure on her nose. She readjusted it, and immediately turned Flara back down to 22% oxygen. The doc, seeing the charting, had concern that perhaps Flara's PDA (heart murmur... I'll leave it at that without a lengthy explanation) had reopened and thought maybe she needed another heart echo. Her nurse explained what happened and that she felt it was probably more a matter of an ill-fitting mask than anything. Clinically, Flara has given us no other indication that her PDA had reopened. So, no echo was done, Flara is back to her normal settings... but, I'm still a bit irked. I want my primaries!!!! Having been a new nurse in the NICU once myself, I know these gals need to learn. However, I don't want mistakes with my baby. I've decided I'm just going to have a chat with the charge nurse tonight and express my concerns. I know Flara is stable and doing well, but I don't want her suffering (more likely her eyes) because someone didn't think to troubleshoot the equipment before cranking the oxygen up. Grrr.

I had told myself beforehand that I will not be a difficult NICU mommy. It's never fun to deal with someone complaining, so Mike and I have been very gracious to everyone taking care of Flara. But, I'm her mommy and I have to look out for her. I'm going to direct my conversation more at concern over Flara not getting her primaries, and not take a complaining tone towards anyone who is taking care of her. I know it's a hard job, and it never makes it easier to have someone questioning your actions. I just hate to have to say anything. It's just not my character. I typically just keep quiet, but I think today is the day I have to speak up. Oh, to have a backbone!

Okay, enough of that. She is still doing extremely well, so I can't complain. =) She gained 1/3 of an ounce last night, still is doing well with her feeds, and her lab work keeps coming back very good. As a type, she is probably in the midst of getting a follow-up head ultrasound to see how her head bleed is doing. I hear, too, she is feisty. Her primary today asked if Noël was a feisty one. I just laughed. Sounds like I'm going to have two fireballs on my hands! But, then, we named her Flara... which means fire! We had it coming! =)

I'm really not good at keeping up with this!

Our little Flara continues to do exceptionally well for how early she is. Today she is 28 weeks, 1 day old gestationally, or 11 days old out of the womb. We continue to praise God that He has been sustaining her, and that we keep getting good reports on her. Please, please, please continue to pray for her. Mike and I believe the only reason she is doing so well is from God's protective hand over her life.

She now weighs a wopping 1 lb, 15 oz! Such a big girl! =) Last night, she gained an entire ounce. For the past week, she has gained 10 grams (1/3 ounce), then lost 10... back and forth between 1-13 and 1-14. So, today was quite a surprise! I like to think that the addition of good ole breast milk into her diet is helping her to accomplish some of her weight gain! Obviously, at her age, she is still "eating" via a feeding tube. This tube runs from her mouth, down past her stomach, into her small intestine, through the duodenum, and rests in her jejunum. Did you follow that? =) Feeding her this way helps little Flara tolerate her food better since it's being dumped right where absorption takes place. When she's a bit older, she'll probably get to have her food put into her stomach, then she'll actually feel like she's eating. She gets a whopping 1 mL/hr of breast milk. That equates to 24 mL in a day, or just under one ounce (which is 30 mL). It doesn't sound like much, but to someone her size, it is!

She is still on CPAP for oxygen. This provides just a little burst of oxygen to keep the alveoli (air sacs) within her lungs open for oxygen exchange. Her oxygen requirements continue to be very minimal at 21-24%. (Reminder: 21% is the same as we breathe, so she can go no lower). Her breathing pattern looks much, much better. She seems less labored, and actually looks comfortable and peaceful lying in her nest as she breathes... completely on her own!

Last night, when Mike and I visited her, we thought that even from the night before that she looked much, much better. Her color appeared more normal, and she looked as though she's beginning to fill out. Must be that one ounce weight gain! Not to be insensitive or icky, but we NICU nurses have often likened the appearance of micro preemies to a skinned squirrel. When they're born, their skin is gelatinous, very ruddy (red), translucent, and they're all muscles (no fat). Combine that with their eyes being fused still... well, I think you get the picture. Despite that, I still look at them and see perfectly formed little babies and think they're beautiful, but there's something about that look of extreme prematurity. Flara had that at birth. Last night, looking at her, she seemed to be past it. She looked like an actual *real* baby, just super tiny, and still lacking fat. It's amazing what a day can do!

Not every single day has been peaches and cream, though. Our little Flara gave us a scare one night with the flu bug. The night that she tested positive, I called the night nurse for a report. She told me that Flara was really lethargic and struggling to open her eyes. She was having more heart rate drops and was needing assistance to reverse them. That news was more than I could handle at the time. Preemies are so sensitive, all it would take is something *simple* like that to do her in. I didn't sleep much that night. God definitely heard a lot from me all night long. We have to constantly remind ourselves that news like that can befall us at any moment. It's easy to get caught up in her good reports and think we're past all the dangers, but we're not ever. That same day, Mike, Noël, and I all went in and were tested as well. We all came back negative. I in no way contribute my fever the night before to coincidence. I truly believe God was protecting Flara. Had I not spiked a fever and had suspicion for having the flu myself, Flara never would have been tested. All week long, her white blood cell count (WBC) had remained quite high. It was unexplainable, and was a concern in the back of my mind (as well as everyone else, I'm sure). Once Flara's flu had been identified and she was started on Tamiflu, her WBC's began to go down and are now at a normal level. I thank God that we found out she was sick BEFORE she really took a nose-dive. God is good!

Mike and I continue to struggle in our daily lives. I realized a few days ago that I've basically been a zombie walking through life... experiencing everything but completely void of emotion or connection. We are tired beyond words. We both struggle at different points with being frustrated, bitter, angry. Throughout the week when everything suddenly went awry (still, the birth story that I have yet to get on here!), I had to constantly remind myself of a couple things. One, God is completely sovereign and in control. Two, a much harder lesson, was reminding myself that no matter what happens, it is meant to bring glory to God. I had just finished reading "Crazy Love" (which I HIGHLY recommend) a few days prior. The author had mentioned in one chapter how easy it is to pray that God fix everything rather than praying for whatever will bring God glory. Ouch. That was a tough lesson because I too often pray to God like some Santa Claus to bring whatever will fix my problems. Having just read this book, it was fresh on my mind to ask God to glorify Himself in this situation. Even as I lay on the operating table, I kept (sadly) thinking that this could possibly be Flara's last moments alive. I know from work experience how difficult the delivery would be on Flara, then the resuscitation, and then trying to survive as a 26 weeker. I kept closing my eyes and asking God to comfort me, help me to trust Him, and to simply do whatever brought Him the most glory. I think that was honestly my hardest prayer... ever.

I have kept reminding myself of that in each and every day. I found it comforting, then, yesterday, when Mike was talking to a dear friend, M (I won't put names for privacy!) who had come to visit and bring us food. He mentioned the story in the Bible where it was being asked of a blind man... was it his mother who had sinned that caused his blindness, or him. The answer was that neither had. His blindness was so that God could be glorified, and he was healed! It was a wonderful confirmation of something I had been reminding myself of for two weeks now. Also, M mentioned that 'we are most satisfied when He is most glorified.' Such truth is so good to hear, especially in times of need!

I am still getting 'used' to sitting on the mommy side of a NICU baby. It still seems completely strange and foreign to me. My response is that I want to do what seems so natural... just take care of Flara as a patient, not as my own child. I think it will help when she's stable enough to be held, that I will feel more like her mommy. Right now, I share my bonding oxytocin (released during breast feeding) with a plastic breast pump. Yuck. Here is my ode to ye olde breast pump:

Dear Breast Pump, it's not that I don't like you. You do a great job. It's just that you're so... plastic. Yes, you're providing life-sustaining milk for my premature baby. Yes, it's true that our relationship continues around the clock, day after day. Yet, still, when I look at you, I feel no affection. I bemoan having to push your little buttons to make you work. I bemoan having to wash you many times a day. I will gladly push you out of my life when my own baby can actually eat on her own. I look forward to the day when I can lock you back up into your little black box and kick you to the curb. Sincerely, Suzanne

Haha! I still need to laugh, and I know I'm a dork. But, all of that is to say that the NICU environment makes it hard to really feel like you're bonding with your baby. I try not to think how long I will have to continue to pump milk before little Flara can actually start eating (as a nurse, I have a good idea, but I'm trying to ignore it and take it one day at a time). I'm pulled because I would like to be with Flara all day, but I have a family at home. I want to hold her *for real* so badly it hurts. But, it's not about me. Flara needs to continue to be in her happy little isolette for now. I can't wait for the day when we can sit and cuddle, and I can feed her like a normal baby. Ugh!!!!! I do know this is growing my heart for all my NICU mommies when I do return to work. I think I will be much more effective in ministering to them because I have a full understanding of all the emotions that comes with premature babies.

With that.... After my random rantings, I think my brain just shut down. =) I can't think of anything else to say, except thank you EVERYBODY for your continued prayers. Flara needs them; Mike, Noël, and I need them. As I said before, I know the only thing sustaining Flara is our awesome God, and the only thing sustaining Mike, Noël, and me is our awesome God. So, please, KEEP IT UP! =D

We love you all!