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