2.7

By Bethany Chu from iamknittogether.blogspot.com

Can I get a drumroll please?..........Penny had a.......GOOD DAY!!!!  (and the crowd goes wild!!!)  The results came back from her hepatic blood panel as hepatitis negative for A, B, and C.  Her bilirubin numbers are headed in the right direction.  Her PICC line cultures came back positive for staph epi so it was pulled out.  Her gases were getting better all day, but as soon as that PICC was pulled she got even better!  Her settings are now almost where I was told they would need to be to be extubated!  So, my hopeful self is thinking it'll happen tomorrow, because they don't usually extubate at night.  Because her PICC line is out she'll have to get her all her medicines through peripheral IVs, which as I'm typing this, she's just pulled her one IV out, but she has an excellent nurse tonight that will get her a new one that should last a few days.  That's the down side of having no PICC is that peripheral IVs only last a few days and then she has to be stuck again, whereas her PICC was in for 6 weeks and just now had to be pulled.  But that PICC was obviously infected and needed to come out.  She should be feeling much better starting really soon.  I also just finished kangarooing with her and she tolerated it for almost an hour.  She opened her eyes a few times and really seemed to rest well when she was sleeping.  Precious precious.

Miss Lydia had a big day herself.  Today was the day that her suck/swallow/breath finally clicked!!! (and the crowd roars!!!) We met with the lactation consultant here this morning and she taught me all the tricks I was missing and things just fell into place.  As I'm typing, again, Jonathan is bottle feeding her for her evening try and she just took 24 ccs from a bottle.  She's a champ!  Also, when we get her out to feed her, we get to dress her!!! I couldn't stop giggling!  When you see these pictures I be you'll giggle too.   

Specific Prayer

• Penny to be extubated soon and to keep improving with her pulmonary system
• Penny's bilirubin to continue to decrease
• Penny's IVs to stay viable for long periods of time to avoid more sticks
• Penny to start putting on weight
• Lydia to continue being a champ at eating (just like her daddy)
• Lydia extra protection from germs and sicknesses as we have her out of her isolette more often

"Oh yea...check me out"

Give her a minute, Little Miss Flower, she'll blow that smile right off your face

Sweet innocent Penny

Penny attempting to take matters into her own hands with this whole extubation debate

Lydia's First Outfit

Lydia's Bath

Tour of Our NICU World

02.06 Update

Lydia - 1780 (3 lbs 14 oz)   Penelope 1120 (2 lbs 7.5 oz...oh yea...that's a .5 oz gain!)

There is not much of an update today, but I didn't want anyone to be worrying.  Lydia is still doing very well.  Today we got to put real clothes on her!!! She looked precious. You can anticipate that the next photo bomb on the blogs will contain adorable pictures of dress up time.  She can only wear them while we're holding her outside of the bed, but hopefully with her weight going up steadily she'll be regulating her own temperature soon and she can wear clothes all the time.  We told her it's a little bit like shaving your legs, once you start you can't ever stop (we'll explain the loopholes in that policy later).  She's continued to do well on her feeds.  She breastfed well this morning and then took 11 ccs from a bottle tonight.  She's still having occasional reflux but nothing too major.

Penelope had a more stable day.  Her blood gases have been good (7.32 Ph and 45 CO2 for those that know blood gases) this evening so I'm keeping my fingers crossed for lowered vent settings soon.  Her hematocrit was low again (29) so she got her 7th blood transfusion.  She's looking better and acting like she feels a little better after the transfusion, so again, I'm hopeful.  Although it doesn't take much to get my hopes up!  Also in good news, she's been "stooling" regularly and there are no worries of digestive issues with her right now.  That's a praise!  Her bilirubin is also starting to slowly creep down, so there's another praise!  I wouldn't say she's going well quite yet, but fighting hard would be a more accurate description.  I'm so proud of her.

Ok, off to bed for me.

for Specific Prayer, see yesterday :)

02.05

By Bethany from iamknittogether.blogspot.com

 

Lydia - 1710g  (3 lbs 12 oz) Penny - 1110 (2 lbs 7 oz)

Today has brought very little change for the girls, but that's ok.  We stayed at home last night and slept in this morning and then there as a shower for the girls this afternoon.  There's nothing like a party just to give you presents to make a girl feel special!  Plus, we're one step closer to being ready to bring these little rascals home!

Lydia is still growing strong.  She's still having reflux issues but that is easily taken care of by us holding her during and after feeds.  That sure is rough.  She's getting closer everyday to being able to go home, and honestly that scares us to death!

Penny has remained stable today, which is a relief.  Basically everything that's wrong with her right now is fixable and she's on the right medicines to fix it.  The cultures from her PICC line and ET (ventilator) tube are growing something that's not identified yet but she's already been started on antibiotics so that is covered.  Her bilirubin is still high but she's on the medicine to help process the excess, so that's covered.  Her lungs are either steady or improving because she's requiring less oxygen on her ventilator settings.  Don't tell her, but she's been on "room air" (21% O2) for good stretches of time!  The past few days she's been very lethargic but seems to have a little bit of her spunk back today which makes me feel better.  She's our little spunky monkey!

Jonathan and I are doing well, although we had a funny realization last night on the way home.  There's something in my heart that still feels like these girls aren't mine.  Yesterday someone commented on a Facebook picture that one of them looked like me.  In my mind I laughed and thought "well that can't be, they're adopted!" Ok, before you start calling Lakeside to have me committed, I realized that my distended abdomen for the past months was more than just a large lunch or an unfortunate digestive malfunction.  I realize that Jonathan and I were used by God to create 2 precious girls....there's just a disconnect in my head between me being larger than average and these babies.  Blame it on the anesthesia for the c-section, or the fact that barely any of this experience so far has been a natural mother/child bonding scenario, but that's that.  Jonathan feels it too...so I'm not crazy (-er than you thought I was before).  In trying to figure out what it is, we at least figured out what it feels like.  It feels like we're on a mission trip.  We've gone to this different environment, separated from friends and family.  We're dedicating all of our time and energy to help out people we barely know.  We're sleeping in less than ideal settings.  We're using public showers.  We're making lifelong friends with people we just met (the nurses and doctors here).  And there's a part of us that expects this to be over and to go back home to our regular lives, changed, but back to normal.  Of course this isn't the case, and we know that in our heads.  But our hearts are a still a little confused.  Technically, as with the girl's development, we have about 6 more weeks before this was supposed to sink in.  Maybe we'll get it all straight by then.  

Specific Prayer

• Penny's lung function to improve enough for her to be extubated (PLEASE)
• Penny's liver function to be normal and for this bilirubin issue to be short lived and because of the TPN
• Penny's possible infections to be minor and short lived as well
• Lydia's continued growth and development
• Lydia's protection from germs (colds, respiratory etc) as she's out of her isolated bed more
• Lydia's reflux to be either reduced or obvious enough to medicate

Thank you all so very much for your prayers.  It truly is an honor to be prayed for so faithfully.

"Someone help me!! These people are trying to bathe me against my will!!"

Lydia's frat boy hair

Kangaroo time with Penny (yes, she is somewhere in there)

Penny's little yellow face...and no that's not an asian joke

02.04 Revision

(by Bethany from http://iamknittogether.blogspot.com)

Penny's gases just keep getting worse. The doc who is on tonight (who we've not met before now) just ordered a chest x-ray to make sure that the vent tube is in the right place.  It looks like her right side is not as well inflated as they want it to be.  They're adjusting the equipment to try to get as much mucus out of the airway as possible to see if that helps her to get more oxygen.  We're still waiting on all the lab work to come back too.  We really need to go home tonight but I'm going to need some divine strength to make myself leave with my baby getting worse and worse.  Please pray for Penny's little body and for our hearts.

Specific intercession requests

1. The mucus in her lungs begin to break up and to be released.
2. For her lungs to continue to stay well inflated and receiving O2 properly.
3. For biliruben issue to be diagnosed and to be resolvable.

02.04 Update

(by Bethany from http://iamknittogether.blogspot.com)

Weeeeeee!  Today has been an up, down, up day already..and it's only noon!  Last night was very quiet.  We bathed Lydia (she liked it) and Jonathan fed her a bottle (she liked that too) and we all rested well.

This morning we woke up to rounds starting early and Penny back on the "blue light special" (phototherapy for jaundice).  We've been noticing that she had a more yellow look for the past few days but were told that it was probably the fact that she's been on the IV nutrition for so long.  This morning the doctor told us that her bilirubin was up to 19 and that he didn't think that was an accurate number because she wasn't glowingly yellow. He had the labs retaken to confirm that those numbers were a fluke...and they weren't.  She was up to 21.  I had just gotten off the phone with my mom saying "I'm not going to worry until the doctors are worried", when the doctor came in and said "I'm worried about Penelope."  Because the timing of the bilirubin bump was immediately after her transfusion, his first thought was that it was something wrong with the blood.  So that is being checked into.  Second possibility was something with the liver, so the Radiologist came up to ultrasound her liver. Her liver is fine.  Now we're waiting on the results from a hepatic blood panel that will check the function of the liver.  Third, we saw a GI specialist who examined her and found nothing of concern.  He said that this kind of jaundice is always multifactorial (lots of things could have caused it) and all of the possibilities are treatable.  That made me breath more easily for sure.  She's been taken off of the phototherapy because the type of bilirubin that she has (conjugated rather than unconjugated...yea like the verbs) is not the kind that is treated with phototherapy.  

So here we are.  Waiting for results and riding the ride.  

Specific Prayer

• Penelope's bilirubin to miraculously level out and for this to be nothing at all
• OR for the cause to be clear and treatable
• really, for her discomfort level to be as low as possible through whatever happens
• for Penelope to still be able to get off of this ventilator despite this setback 
• Lydia to continue to do well on her feeds and gain weight

We'll send brief updates as we get more information.  Thank you so much for walking down this road with us.

02.03 Update

(by Bethany from http://iamknittogether.blogspot.com)

Sorry we've been a little slower with the updates lately.  There's been change, but nothing major. Plus, being able to hold Lydia more and more often as well as help with her bedding and bathing, really takes up some time! We're having so much fun.  She's doing better and better with her feedings.  She just took 16 ccs of her 31 cc dinner from a bottle....she's a champ.  She's having a little trouble with reflux but when Jonathan holds her upright for a while after she eats she does ok.

Penelope has been throwing her tantrums more a more.  In my opinion, she's tired of that stupid vent in her throat and she wants it out.  We just have to convince her to show us that through her numbers.  Her lungs still have fluid in them so they're treating that with additional diuretics. The numbers are getting incrementally better and the doctor's are aggressively weaning her, so they say she should be able to be extubated in the next few days.  We're hoping for tomorrow.  Her feeds are up to 2.5 ccs/hr continuously.   I also got to kangaroo care with her yesterday and plan to do it again tonight....it was sweet.  She settled right down and so did my heart.  

Now I gotta get off this computer and hold my baby.  Hope you don't mind :)

Specific Prayer

• Penelope's lungs to clear up so she can be extubated
• Lydia's reflux to be minimal
• Penelope to get better so she can grow faster
• Lydia to continue to improve on oral feedings
• Jonathan and me to get supernatural rest in short bursts
• Jonathan and me to relish every single step

Thank you Thank you Thank you

02.01 Evening Update (sorry it's late...)

Yesterday ended up being a rough day more so at the end than at the beginning.  

Penelope 1160grams (2lbs 8.91oz)       Lydia - 1510grams (3lbs 5.26oz)

Yesterday was a Penelope day.  She wanted everyone to be around her, helping her out.  She has been nicknamed the "drama queen" because of her big swings with her vitals.  Whenever she begins to alarm, either high or low, we get to the alarm and it stops right before we hit the button.  Also when she has a fit, she'll throw the biggest one she can.  For example, she hasn't had a big brady in a while but just an hour ago she had a real big bradycardia (not a good thing), turned a horrible shade of blue and scared the living daylights out of us.  But as soon as she came back, she was wide awake, looking around, in our minds saying "so...what's going on guys?" That type of drama queen.  So, we know already that we've got ourselves a handful of crazy coming when they get older.  Of other stressful things yesterday, Penny alarmed almost all day and I mean almost all day.  If it wasn't too high, it was too low or she'd be clamping down on her vent tube or at the same time her infusion would be done or IV fluid making noise.  It was a very ruckus type of day in the alarm world.  

Penny started on her steroids yesterday to help combat her BPD (bronchial pulmonary displasia), another name for chronic lung disease and it will run.  The Lasix was stopped today and replaced by another diuretic called Aldactazide because the Lasix has the potential to pull calcium out of her bones which she needs desperately right now!  She's still being given some sedatives to help calm her and not let her burn too many calories or extubate herself.  So far her second day with the steroids has been much calmer.  Her overal neediness has been much lower and her fighting fits have been better.  She did have to have a dose of Fentynal & Ativan tonight to help her out of one of her unexplained super, albeit sadly quiet, fits where she just scrunched her forehead and held her mouth wide open for a long time.  Bethany sat with her, trying to comfort her but to no avail which is when the nurse decided it was time to help her calm down.  She has been tolerating 2cc continuous feeds and pooping it back well.  She's still getting her TPN & lipids to help supplement her while she's still going through this phase.  

Lydia continues to grow like a weed.  It's really one of the hardest things about this situation.  One well daughter and one not so well daughter, literally with a turn of the head.  Lydia is taking 30 min. bolus feeds of 31cc's fortified milk.  Today, though, she started bottle feeding!  At 2pm Bethany fed her her first bottle and she took 6cc's of her 31 like a champ!  Still learning the suck, swallow, breath concept, she did have a few forgetful moments where she got "greedy" and continued to swallow without breathing, causing a few desats that were easily remedied by the ole bottle removal and gentle nudges to take some breathes.  She continues to make nice smelly diapers with her largest output yet being a 50cc diaper!  (that's HUGE and i was the lucky one to get it!)  I did get to feed her the evening bottle and she did about the same with even fewer desats!  That's a fast learner!  The nurses are proud and impressed with her capabilities!  She's also starting to get, by PO, her poly-vi-sol (a really smelly liquid multi vitamin) since she doesn't have a TPN bag anymore.  Her goals are just to sleep, eat grow! 

Specific prayer requests:

• Penny to handle the steroids well (no brain bleeds or brain damage - only long term will tell).
• Penny to continue to ween off the vent.
• Penny & Lydia to continue tolerating feeds with no NEC issues.
• Lydia to continue learning the suck, swallow, breath technique.
• For Bethany & I to continue taking these days in a gracious stride.
• For all of you to be immensely blessed by your continued, faithful prayers and follow-ups with us!  Thank you! 

On other, non baby news, we had a tweetup (slang for when people who use the social media format called Twitter, get together) with the cool PR people Amanda & Melissa yesterday.  For those that don't follow the crazy world of social media, Twitter is a short form, "micro-blogging" tool.  Through my tweeting about it, Amanda (@lebonheurchild) started to keep up with what was going on here in the NICU and wanted to stop byto put Twitter name with family.  We had met Melissa previously when the girls first got here together so it was nice to get to meet up with other folks that help get the LeBonheur name out and about, who tell the stories of families that are helped by LeBonheur.  If you're on Facebook, you can "Like" them here. Amanda also brought us these cool heart luggage tags that are currently room accessories until the girls have their own rolling bags.  Thank you Amanda & Melissa!

                           

We love you all!

The Chus

1.30 update with sneak attack Photo Bomb. Skadoosh.

Penny - 1170 (2 lbs 9 oz)               Lydia - 1540 (3 lbs 6 oz)

This morning didn't start the way we had planned but it was probably for the best.  Some of you must have been praying for rest for us because despite our alarms going off (multiple times) we still slept until around 11.  We were disappointed to miss church, but figure we were being protected from getting some awful bug from some well meaning hugger.

Alright, the news.  Not much new with Lydia today.  She'd eating well and pooping well.  Very well.  She's up to 29 ccs every 3 hours, which is just shy of an ounce.  Yesterday she had 3, count em, 3 dirty diapers.  We were so proud.  She's still doing well with the practice breastfeeding and loving kangaroo time.  She even gets regular kangaroo time with her daddy now, which is sweet sweet sweet.  The most exciting thing (for me anyway) is that because she has no IV or PICC line anymore, we can bring in our own receiving blankets to make her bed with so it's not the boring hospital ones all the time!  Some friends recently gave us some pretty girly ones so today her bed is in pink and purple stripes.  We joked about always dressing Lydia in purple because her name means "the seller of purple"...now we just have to find more purple receiving blankets!  

Penny is fighting as hard as she can.  Her chest x-rays show that she has what's called chronic lung disease changes, which is somewhere between preemie lung disease (which they both had) and full fledged chronic lung disease.  It's very common in preemies and is especially worsened when a baby is on the ventilator or oscillator for extended amounts of time.  Basically it is an inflammation in the lungs, and that inflammation draws fluid.  This is the fluid that is causing Penelope's CO2 levels to stay too high and her O2 saturation to drop regularly.  The first plan of attack is another round of diuretics (Lasix) to get the fluid off.  She got her second dose today and is peeing a good amount, and her CO2 has dropped a little, but not enough.  The next plan of attack is to put her on a low dose of steroids to treat the actual inflammation.  In the past, they treated with high doses of steroids for a long period of time and saw developmental delays as a side effect.  Now they use a lower dose and have seen no evidence of side effects, but there are few studies on it as it is a newer technique.  The doctor says that he's seen kids off the ventilator in 2 days after getting steroids, so naturally that gets my hopes up.   We'll just pray that she's one of those kinds of kids!  The good news for Penny is that she finally preceded Lydia on something.  She had 4 poppy diapers yesterday and her feeds are up to 2 ccs per hour! That's right...she's a champ.

Every day it gets harder to see her just laying there.  Every once in a while she'll get mad and turn all red and squirm around, but if she does that too much she ends up getting a dose of ativan to keep her calm.  Although some activity is good, our goal is for her to gain weight.  If she's burning calories by being mad all the time, that's counter productive.  When I look I her I try to make myself imagine chasing her around the park, or having tickle fights on the couch.  Keeping an eye on what the future holds for her takes the edge off of what she's having to go through right now.  Despite all of our intentional positive thinking, when I look at her I can't help but say "poor baby."  Nobody should have to go through this.

Specific Prayer

• Penelope's "chronic lung disease changes" to clear up
• continued healthy digestion
• fewer desats for both of them
• Lydia's suck/swallow/breath skills to develop
• peace, wisdom, and patience for Jonathan and me.

Now for some comic relief...

(taken between 01.22 - 01.29)

"strike a pose, vogue"

 this is how Penny gets grounded when she tries to extubate herself

 "attack of the blob!!!!!"  

"goodbye cruel world"

The glowing foot is the O2 sensor....just in case you thought she was doing that on her own

"oooo....it looks cool from up here"

     

How could you not smile at that face                                 

                                    

thumbs up for hairbows and tummy time (first one in 2 weeks)

don't worry, her hair will grow back eventually

a little comfort time with mommy after Lydia's first eye exam...they said it didn't hurt...my FOOT!

Penny's post eye exam...we couldn't hold her though

"check out my new toy!  it's a ventilator!"

"reunited and it feels so goooood"

Jonathan's mom getting to hold Penny for the first time

bonding time with the grandmothers - that's 3 generations of girls (with Penny in the background)

Penny's starting to pack on the grams!

snuggles with Lydia

poor kids

bad hair day

cool new bed called the Z-Flo...maybe that'll be her DJ name "lil P-money and the Z-Flo"

Penny finally letting us touch her after many days...it was a sweet time

lil P-money's shoulder fuzz...got that from Uncle Justin

Lydia got her own Z-Flo too....she's still working on her DJ name

Lydia passed out on daddy

"chubby bunny... chubby bunny"

"say what?"

1.28 Update

(by Bethany from http://iamknittogether.blogspot.com)

Penny - 1080 (2 lbs 6 oz)    Lydia - 1500 (3 lbs 5 oz)

Just a quick update on our relatively quiet day.  Penny FINALLY got moved next to Lydia last night while we were at home.  It was really wonderful to come in and find our two little girls closer together.  Lydia's been stable today and got her feeds increased again. She's at 28cc every 3 hours.   That's almost an ounce!  We had another date with the lactation consultant today and that went well too.  She's not ready for full breastfeeding yet but we're "baby steppin"...get it?  cause she's a baby?!...oh well

Penelope has been doing pretty well although she's still very very touchy.  Too much talking or much touching at all and she'll drop her sats (oxygen saturation).  I was really hoping to get to hold her today but the doctor wisely said we should wait a few more days for her to settle down.  The good news is she's off all of her antibiotics because her repeat cultures never grew anything. She's also off of her dopamine (which was helping her get some of that fluid off) and is still peeing well on her own.  The thing that's the hardest for Jonathan and me is that she still seems so uncomfortable.  Then again, you would be too if you had a tube shoved down your throat...not to mention missing out of the last 3 months of the best time in anyone's life!

Overall it was a pretty good day!

Specific Prayer:

• Penelope's moving towards extubation 
• The cause of Penelope's discomfort to be clear or go away
  
• Lydia's moving towards breastfeeding
• Both protection from NEC
• Rest, Wisdom, and Endurance for us

Lots of Love and Appreciation

The Chus

P.S. There is shower being planned for the girls that will be happening on February the 13th.  They've threatened to beat me up if I don't mention something here to make sure all who wish to attend are able to.  If you would like more information just email me.  There, now they won't beat me up. ;)

If this doesn't make you cry...

my cousin sent this to me about a series started by Pampers about Preemies.

http://www.pampers.com/en_US/preemie/

It's very much what life is like for us right now... maybe we should do a video ;)

1.26 Uber Massive Photo Bomb! Kablam! (56k warning)

Yeah that's right... i used 56k warning 

Click on images to make larger

(pictures from 01.19-01.22)

Little Penny

 Lifting my crazy heavy daughter

 Holding Lydia after Bethany washed her for our first time.

No, I'm not happy about holding my baby.

The hoss of the two and still so tiny.

We know it's just gas but she makes some pretty awesome faces!

Dimples!

 Hair bow day!

Picture time with Penelope. Awake and looking at mom.

 Our tiny baby.

First day to Kangaroo without her PICC line!!  One step closer to wires free!

She's our escape artist... sneaking her way to the end of the isolette.

No paparazzi! 

Dear Jesus, may I have awesome hair, finger nails and for this stinkin machine to shove off.

First time for me to kangaroo Lydia!!  Overwhelmed by emotions right here.

Trying not to cry and smile.

Relishing in the newfound feeling of actually being a parent.

Close to being done and not wanting to let go.

My last ten minutes ended with a nap of course!