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?