URGENT PRAYER REQUEST

It can always be expected in the preemie world... when things seem to be going best, then they get (terribly) worse. Today, we're there.

Last night we were told that Flara's tummy had really become big again, and she was dropping her oxygen levels quite a bit. Rather than continuing to increase her feeds, the practitioner decided to hold her at the current rate.

This morning, Mike and I headed to Kville so I could nurse little Flara. I told Mike driving up that I felt like there was going to be something going on. As I walked into the hallway, I saw the doctor sitting outside Flara's room. I knew something was up. I said 'hi' and asked him how everything was going. He mentioned that he had been trying to call me and asked if I knew that she had trouble overnight.

Basically, one of the big threats to preemies might have happened or be in the process of happening. I've mentioned the condition "NEC" that results in parts of the bowel dying off. This doctor is suspecting that Flara has possibly had an uncaught bout of NEC in the past that has left her with a section of her bowel being dead. It could explain her recurring feeding intolerances. She will be undergoing testing in the morning. If the tests confirm the suspicions, little Flara will have to undergo surgery to remove the portion of bowel that has died.

We are very scared.

Still holding strong.

Flara is continuing to do well. The doctor decided to try her again on 2 liters of oxygen on her nasal cannula because she had made it over 24 hours without a heart rate drop. Although we have seen her fail this multiple times within hours, she is still going strong nearly 12 hours into the flow decrease. She's also still without any heart rate drops. =)

Because Flara has been nursing so well, the doctor also wrote that she may try nursing one to two times daily. She didn't spit up after feeding her yesterday, so he has asked me not to pump just prior to feeding. The plan is to turn off her continuous feeds for one to two hours post-nursing, and see how she handles the milk in her tummy. I was able to try feeding her again today. She did very well, and didn't spit up after that feeding. Hooray! Tomorrow, our plan is to go visit during the morning so I can feed her, then go back at nighttime. Her nurse called me this afternoon to inform me that Flara woke up shortly after our leaving, and was wide awake chomping and smacking on her pacifier for a solid hour! I think we have finally unleashed the little monster! She was also awake and looking for mommy this afternoon. Poor little girl!

Flara has been hanging out in a fancy-pants bed called a 'giraffe' bed. These beds have built-in scales, and can do all sorts of amazing features. They're quite handy, especially with micro-preemies, like Flara! A big advantage of the in-bed scale is that it minimizes handling of the babies when they are so fragile. I was quite stunned this morning to walk in and see that she had graduated to a 'normal' isolette. Now, she'll have to come out and be weighed on a scale like a big girl! She hit 3 pounds, 11 ounces today, so she really is a big girl! (Or, so we think!)

Today, too, our little Flara is officially a 34-weeker. Although this is the earliest preemies can go home (if they meet a long list of criteria), our Flara still has a long journey before she's ready to leave the NICU. Daddy was holding out for an early departure early on, but I sadly informed him that I never see 26 weekers go home at 34 weeks. Usually, they're in for longer than their due date. Although we get (and currently are) super antsy about Flara being in the NICU, we are so thankful for all the progress she has made, and look forward to the progress yet to come.

I'm still worried about that yucky central line. I'll breath much easier when it comes out. It seems we might be 2-3 days out from turning off her IV fluids, so hopefully she'll lose it in 3-4 days. Today marks 2 weeks in, which is the same as when her last infection reared it's ugly head. She became pretty septic, and as I've said numerous times, took her a month to fully recover. I'm in constant prayer about it, and I urge you all to fervently pray against an infection as well!

Last, please pray for guidance and wisdom for Mike and me. We have a lot of big decisions to make regarding a multitude of subjects, and we are trying our best to figure out what we need to do. Also, I'm still struggling with the mishaps of my delivery, so please continue to pray for peace.

So happy!

Little Flara was able to try "non-nutritive" nursing today! I was so excited to get to try with her. I always feel bad for her being away from Mommy and worry about her bonding and feeling alone. Normally, I should have pumped right before so that we could be sure she wouldn't really be getting anything. The goal is that the babies will 'learn' and begin to make associations that will lead to successful nursing later. It had been 1 1/2 hours since pumping, so her nurse and I knew I'd have a bit of something. Little Flara vigorously latched on, and it didn't take long before I had a 'let-down.' I was afraid it would overwhelm her (she's never eaten anything orally before... ). Her little eyes opened and she got really big eyed! I thought, 'here comes the choking and the heart rate drop.' Nope. Wide-eyed, she made a big "gulp" and went right back to work. No heart rate drops, no oxygen drops. That's my girl! She lasted a solid 20 minutes, then zonked out. I was thrilled! She didn't make a peep when I had to put her back to bed. It was a good precursor for Daddy to come see her. He said she remained in a good little milk coma during his entire visit. I'm including some pictures. No worries... there is nothing visible in the pictures! =)

Little Flara is 33 weeks, 5 days and weighs 3 pounds, 9 ounces.

So sweet!

I'm super excited. I don't think it's very obvious. Yeah, right! (It was just as good for my bonding as it is for her!)

New pictures. =)

Here are the newest pictures of Flara and one of big sissy Noël. On the day these photos were taken, Flara was 33 weeks and 2 days and weighed 3 pounds, 7 ounces. This was also the day that Flara was able to be dressed in baby clothes for the first time!

She currently is 3-8 for her weight. We're facing another round of tummy trouble so Flara's feedings had to be decreased again. At least this time they were not stopped completely. Feeding intolerances are always very scary for us... it can be a precursor to a very serious GI problem called "NEC". Please pray against this! Also, the slow-down in Flara's feedings means she will need IV fluids even longer. We are past one week on her PICC (central line) being in... the longer it's in the more nervous we are for infections. Her first PICC became infected at two weeks. The sepsis that resulted has taken Flara a full month to fully regain the ground she lost, so we are really praying that this, too, will not become another problem.

She's still at 3L of flow/minute on her cannula. She was given a trial at 2L, but she just wasn't ready for it. Her medications to help with her heart rate drops was increased today. She was having more events, so she may have been outgrowing her doses. She was also started on a new medicine today, 'Reglan,' that will help her with GI motility. This is to help to keep things moving and reduce reflux. She actually had a large number of changes and additions to her orders today. We are hopeful the new changes will help Flara out.

It again has been a stressful weekend. Mike's had a sinus infection, so only I held her Saturday. It did provide me a long cuddle time, but I hate for Daddy that he didn't get to cuddle with his little gal. I was glad to see Flara Saturday and to get to do skin-to-skin holding with her... that was the day her tummy troubles started. I always feel better seeing her when I get word that we've gone a few steps backwards.

Today is Sunday... my dreaded no-visit day. The day has gone quickly, though, so I'll be seeing her shortly come morning.

Please continue to pray for those things I listed... infections, lung improvement, tolerating eating. Also, please pray for Mike to get better, Noël and I to stay healthy (although Noël now has a runny nose), and for Mike and me to not be bitter from our delivery. The delivery story hasn't made it here yet, but it has left us with a strange multitude of feelings and emotions.

Enjoy the pictures!

Noël is very helpful. She's pumping! (If only it were that simple!)

Sweet little Flara holding Mommy's hand. (She has really grown from the first similar picture at a few days old!)

Little Flara listening to Mommy.

Snuggle time.

Peaceful baby.

A tale of two liters...

(Here's a picture from holding Flara yesterday... she was in a daze from her cuddle time!)

Today. Where do I begin?

I survived my 6 week postpartum checkup today. =) So glad it's over. I was glad to go home and see Mike for 5 minutes before he left for work. He didn't get to go with me to the appointment because he had to appear in court. So, I hurried home to say 'hi' and 'bye.' I also needed to feed the very hungry Noël and myself. While feeding Noël, I made a monster pot of soup for myself... wild rice & mushroom with chicken. As I finished getting Noël out of her chair when she was done, I grabbed a new 2L of coke and poured myself a glass. Because it was brand new, it fizzed up on the ice. So, I set the 2L on the counter and waited for the fizz to settle to top off my glass. While waiting, I proceeded to grab some of the groceries still sitting on the floor from my WalMart run last night. As I reached up into the cabinet to put away some gluten free pasta, I felt a strange pull on my beloved bathrobe... followed by a 'fzzzzzzzzzzzzzzzzz' sound... although much longer.

Confused, I stood not moving. My hand was still half-way reaching as I listened in horror and tried to understand the sound I was hearing, as well as try to understand why my face was dripping wet. So, too, was my hair. I slowly turned my head to see the culprit... my beloved bathrobe had become ensnared in the grips of the new opened 2L of coke, sending it off the counter. It hit the ground and became a fizzing, spinning coke bomb. My senses were thrown, so it took me a few seconds to process what was happening and stop the bomb. It kept spinning, spewing fizzy pop EVERYWHERE. I grabbed it and stopped the hosing. Basically, the entire bottle was gone!

I slowly turned around my kitchen and surveyed the damages. Literally every single cabinet was hosed and dripping from ceiling to floor, the fridge was dripping, my counters were dripping... I opened the cabinets, including the one I had just cleaned out due to the unattached drain... pop standing in there, too. Coke was in everything, on everything, and I had one major spray of pop from the top of my head, down my robe, on my just-washed jeans, and soaked through my socks. My floors... pretty much a pool of pop. My rugs. Soaked. It even sprayed out of the kitchen and all over my carpets. I let out a big sigh and wanted to sit down in the mess and cry.

Just as I was thinking I needed to cry, I realized my little Noël was excitedly rounding the corner. I had to snap out of my pity party and react. I ran and grabbed towels, I grabbed a mop, heck, I even threw down my bathrobe to soak up the mess. Noël appeared and was pleased. =) She splashed around in the mess. I began soaking pop as quickly as I could and then carried my dripping towels to the wash...

And, there it was... in the midst of the 'explosion' of pop, my poor epileptic dog peed himself. Great. I had a big ole puddle of pee in the hallway, as well as a trail where he ran scared away into the living room, followed by another squirt. Ahhh... so thrilled. I cleaned that up, booted the dog out the door, proceeded back to the kitchen and commenced to clean again.

The aftermath: three good hours of cleaning. Noël? Waaay late on her nap. I realized as I was getting her ready that her beloved 'bubbles' blankie was sopping wet, too. Rats. I tried to sneak Bubbles to the laundry. I was caught. Noël proceeded to produce massive tears and wail. I couldn't console the poor girl. She went to her room and cried more. I tried loving on her again. No, she didn't want Mommy. Defeated, I told her she just had to take her nap sans Bubbles. I gave her an alternative. That didn't work. She wailed and wailed, very forlornly, from her crib. Poor girl. It really broke my heart. Eventually, she fell asleep.

I returned to the kitchen. Brain triggered... soup on the stove. Double rats. In the chaos of the mess and bubbles and dog pee, I forgot my pot of soup. I burned the bottom. I did my best to scrape out the burns, then poured myself a bowl. Three hours late for lunch... oh, well.

My next thought was, 'why is my life such a joke sometimes?' Really, I feel like the butt of a really bad joke. I know it's not true, but, I swear, I could write a book on the antics of my daily life! At least it's all settled. For now.

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Flara news (because we all need a little positive!):

Flara had a rage of fury night before last and ripped off her nasal-SIMV mask, tape, and all of her feeding tubes. She was over it! Just as they were beginning to replace it, her nurse asked if she could just leave it off and try her on high flow oxygen. They did, and so far, she's still making it! She was at 4 liters of flow first, and is now on 3 liters. We are so thrilled! When I walked into her room the morning after it happened, I saw a fuzzy little head of hair... I quickly wheeled around because I thought I was in the wrong place. Nope! That was my little girl! We praise God that she's progressing!

She also had a good report with her head ultrasound. Her head bleed was now called a 'diminishing clot.' We are so thrilled to hear that it's beginning to go away.

Flara also had a repeat on her eyes. She is still without disease, and the doctor was able to say that she also does not have cataracts.

One area to really pray for is her head growth. On the charts, she is lagging in her growth. However, she has had a hat to hold her oxygen source on her head for a month now. Where her head was a perfect round little head at first, it now looks more like it has grown upwards rather than outwards. Although the nutritionist mentioned concern, her primary nurse and I aren't too worried. We'll just keep praying, though.

Noël has just began talking in her room, so I need to go rescue my little girl before she gets too upset. Thank goodness she did take a nap.

Oh, and one last thing... Flara is 33 weeks today, and Noël is 21 months today. =)

November is 'Prematurity Awareness Month'

As today is the first of November, I would like to share with you that November is 'Prematurity Awareness Month.' If anyone would feel so inclined, you can visit the March of Dimes website (www.marchofdimes.com) and make a donation. MOD donations are used to research treatments that have proven life-saving in the early birth of preemies. Without their research and discoveries, little Flara and thousands of other babies like her never would have had a chance.

CPAP was not a success.

Little Flara failed her CPAP at 0330 this morning, so she had to go back onto her nasal-SIMV. She was having too many heart rate drops through the night. Most likely, this is due to her having to stop the medication Myseline... it can only be given orally, so during the time that her feedings were stopped, she was unable to receive the med. It takes three days to really take effect, so it'll probably be nearly mid-week before we start to see any improvements.

Also, her IV's have not been lasting at all, so the doctors placed another PICC (central line) this morning. It'll be better because she won't have to have as many IV sticks, but it's a big risk for infection. Currently, she still has an IV in her head, but she's getting another blood transfusion as I type. Once the blood is finished, that IV will come out, and she'll only have her central line left. I'm praying she won't get sick again... it was her PICC infection a month ago that started a good deal of her troubles that we have not been able to overcome yet.

Flara will get another repeat tomorrow on her head ultrasound to assess her brain bleed.

Her feedings were increased today at 1400 hours to 1.5mL/hr, and will be increased every eight hours by 0.5mL/hr. This, of course, is if she tolerates what she is being given.

Flara's lab work is continuing to improve, so she is responding well to her antibiotics.

Also, today is Flara's 6 week birthday.

I had a big breakdown after church today.... still having a breakdown would be more apt. I've held it together for most days and most news, but today I just can't seem to take it. I want someone to just be honest about everything going on with Flara. NICU nurse or not, I'm still a mom. Because I am a NICU nurse, I'm all too aware of all of the worst-case scenarios. So, when something happens, my mind is racing to 'it could be indicating this or leading to that.' I would just like to shut that portion of my brain down right now.

Our pastor is going through the 10 commandments right now. Today, the topic was on adultery. Pastor B talked about how we as a society love our objects more than our God. Yes, we basically have adulterous affairs with our objects. I said to Mike, "BIG ouch." Pastor B talked about how we truly don't know what it's like to need something or to go to bed hungry and how we spend unimaginable amounts of money acquiring objects. Ouch. Again. Then, how we use our new objects to bide our time and keep us from our Savior. Ouch. I'm as guilty as anybody, but the sermon had me thinking about how my mind has been so completely and utterly filled with thoughts of 'will Flara make it?' Rather than spending my time consumed by my fears, I need to be filling that time with Christ... praying and reading His word. Christ only can provide the peace that I so desperately desire.

I can do nothing without Him.