2.21 - Una Bomba De Fotos - Muy Grande!

By Bethany Chu at iamknittogether.blogspot.com

 

Lydia - 2121g  (4 lbs 10 oz)     Penny - 1380g  ( 3 lbs .6 oz)

It's official!  Lydia is going home tomorrow!!!!! Barring any unforeseen situations.  She's taking her feeds well and gaining weight.  Penny is staying steady with her bottle feeding and is gaining weight overall.  Sometimes her diuretics throw off her weight a little but we can tell everyday that she's getting bigger and bigger!  Today, Penny was also changed from the high flow oxygen (with heat and humidity added) to a regular one (without the upgrades) and so far she's doing really well.  What a big girl! Penny has her spinal and head ultrasounds tomorrow and will be checked out by a surgeon to see about her hernias (it looks like she has 2 inguinal hernias) and what the plan will be with those.  Other than that, Jonathan and I are just trying not to freak out about this new phase of preemies.  Our normal is about to change.  Again.

Specific Prayer

• Everything to go smoothly with Lydia's being discharged
• Lydia to not request a new family once she realizes that she's stuck with us
• Penelope to continue to eat well and breathe well (her lungs are still holding some fluid)
• Penelope's ultrasounds to show nothing abnormal 
• Penelope's hernias to repair themselves or for the surgery to be in a few months and to go smoothly

 Penny sportin her new decorations

 Lydia escaping her Mommy's less than spectacular swaddling

 Mommy Penny bonding time

 We hurt Penny's feelings when we told her she was stinky...but she really did smell like cheese

 Our new twin-toting vehicle...what a huge blessing

 Lydia chatting with her lamby

 Daddy Penny bonding time

 "ooooo...this tastes gooood"

 Pappaw told a joke

 Lydia doesn't think my joke was funny

 Penny's wall of love

 Lydia loving her swing...thanks to the Forrest Spence Fund for providing it!

 

Daddy Lydia bonding time 

Lydia's new crib

 Glimpse into NICU life

 

Penny taking matters into her own hands

2.19

Lydia - 2060  ( 4 lbs 8 oz)          Penny - 1420 (3 lbs 2 oz...oh yea...broke the 3 lb mark)

Today has been decidedly better.  Lydia is back on full bottle or breast feeding and has had her NG tube removed.  It looks like if she keeps this pace she should be coming home on Tuesday or Wednesday.  I think she just wanted to give me another day to find lamps and rugs for the nursery!

Penny is taking her bottles well and is breathing much better.  Penny was starting to look puffy and her right lung had some fluid so she was put on diuretics and that seems to make a big difference.  We've all had a lovely evening feeding, kangaroo-ing, bathing, and just enjoying being together.  Thank you for all of the prayers.

Photos to come in the next post....we promise

2.17

by Bethany Chu from iamknittogether.blogspot.com

Lydia -  2040 (4 lbs 8 oz)       Penny - 1340 (2 lbs 15 oz)

I guess our updates will start to miss a few days here and there as this journey gets much less N-I-C-U and more N-I-C-E! 

Lydia continues to do well in her big girl bed and is keeping her temperature up. We're doing all of the pre-discharge things and getting very excited.  Excited and scared to death...but more excited.  We had our infant CPR class today, so we're set there.  Lydia had to pass a carseat challenge yesterday and did wonderfully. Basically it's to make sure she can hold her head up enough to breath well in the car seat.   She also passed her hearing test and got her 2 month immunizations today and we're hoping she sails through those and can go home on Monday! Right now she's a good bit on the fussy side.  Today she was put on a "she can have however much she wants to eat" plan, so we should see that weight just keep climbing.  She also got a mobile with her new bed and really loves it.  She'll watch the animals spin around, and of course she loves the music.  Naturally.

Penny is steadily gaining weight, her bilrubin is going down, and she's taking her small bottle feedings pretty well.  They were upped to 10 ccs 3 times a day, in addition to her regular 23 ccs every 3 hours.  She's still working on her suck/swallow/breath but enjoys trying to figure it out.  She's still on her oxygen canula but most of the time is on room air with 2.5L pressure.  Today they weaned her to 2L but this afternoon she started breathing really quickly (tachypnea) so they upped her pressure again and it seems to be helping a little. If this update seems short it's because as soon as I'm finished I'm going to kangaroo with her to see if that will help calm her down.  We'll see!

Specific Prayer

• Lydia to handle her immunizations well and not have a set back
• Lydia's discharge plans to go smoothly
• Penelope's tachypnea to resolve
• Penelope to keep growing and to not have any more complications!
• Jonathan and I to focus on the joy of bringing babies home and not to worry

2.15 - Big Girl Day

Lydia - 1986 (4lbs 6 oz)   Penny - 1330 (2lbs 14 oz)

We had a big day today.  Or should I say a "big girl" day.  When we called to check on Lydia in the middle of the night the nurse told us she was waiting on a crib. A real life baby crib with no added heat!  That means that Lydia totally sailed through holding her temp up and went straight to a big girl bed with clothes on and swaddled up.  She even has a mobile!   I can't even begin to describe how gratifying it is to hear your baby cry, walk over, pick her up, and calm her down.  Its amazing.  She's also doing very well at feeding (from all bottle or breast..no more NG tube!) so most of the time when she cries she's either hungry or needs a new diaper.  Like a REAL baby! Something I'm sure I would have taken for granted if we hadn't been walking down such a difficult road.  So I'm grateful for the opportunity to appreciate every little thing!

Speaking of little things, Penelope is doing very well.  Her bilirubin continues to come down slowly and her activity level is coming up.  She's often very bright eyed these days, even if those eyes do look a little yellow.  She's packing on the grams with her extra fortified milk.  She's getting her breastmilk fortified to 27 calories.  Which sounds like a tiny bit to us, but when you calculate it (I say you because I can't) as compared to her body weight that's HUGE.  She's getting 3 extra bottles of 5 ccs each, just to "baby step" her into full bottle feeds.  And once she gets to 1500 grams she should be able to keep her temperature up like Lydia mastered today.

Now, in regards to the "h" word (for those of a you a little behind, it rhymes with Rome, foam, and depending on where you're from, poem) we were a bit surprised today when the doctor (Our favorite one who was with us when we got here...yay) said that Lydia could be able to go home as early as Thursday (this was on Tuesday), possibly Friday, but most likely Monday.  WHAT?!?!  YOU MEAN THEY'RE GONNA LET US TAKE THEM HOME?!?!?!  After I freaked out, I realized that all she really needs are diapers, bottles, and a safe place to sleep.  We have all of these things (for now anyway) so we don't necessarily need the art up on the wall in the nursery or everything perfectly organized...but we just thought we had a little bit more time!  As I'm sitting here I realize that tomorrow (which is technically today since I'm writing this at 5:30 am) is their 2 month mark.  And all along we were saying 2-3 months.  We just didn't think it would go so quickly!  I guess we'll be saying that for the rest of our lives.  When they start to walk, go to kindergarten, go to prom..etc.  We'll probably always be amazed that God gave us these girls and that time flies so quickly. 

Specific Prayer

• Everything to fall into place for us to get Lydia h...I mean...you know
• Penny to continue to do well and catch up with Lydia and get to go...to the zoo...yea...the zoo
  
• Us to be able to focus on enjoying every moment, rather than freaking out!

02.14 Update

I am proud to announce that I have very little news for you today.  We're just trucking along this little feed and grow plan. 

Lydia - 1950g  (4 lbs 4 oz)    Penny - 1250g  (2 lbs 12 oz)

Penelope did need another blood transfusion today but is satting much better even immediately afterward.  She's been upped to 3 bottles of 5 ccs each daily. She's also scheduled for a head ultrasound as well as a spinal ultrasound to check on her little dimple for next week.  None of the doctors seem concerned about either. 

Lydia has gone to all her feedings being by bottle or breast. She's also starting the process of being weaned off of her temperature assistance.  She gets to keep her cute little Valentines outfit on (she says thanks Aunt Shelli) and whatever adorable hat we pick and the heat on the bed will be turned off. Then we'll check her temp every hour to see how she's doing.  If she does well then we'll get to open the box and see how she does in the real world!  This is only slightly nerve inducing for me because inside her box she's safe from sneezes or coughs or random airborne attack.  I'll have to switch into "mama bear" mode and make sure she's protected.

While we're on the topic (as if you have a choice of topics in this situation) I'm tempted to go ahead and apologize for the tenacity with which I'll be protecting the girl's immune systems.  But I won't give in to temptation.  It's my most important job at this point in my life and in theirs to protect them from as much harm as I possibly can.  The hard part is going to be that the harm they are most in danger of will come from sweet wonderful caring supportive family and friends.  I guess it wont come FROM them but rather ON them, in the form of germs.  It's going to be so difficult for me to tell people that they can't visit, see, touch, hold..etc...these precious babies that they've been praying for so fervently for so long.  But the fact of the matter is that because of their weakened immune systems, one cold germ could possibly be deadly for my girls and I just can't risk that.  I know that intellectually everyone will understand this, but I also know that emotionally it really stinks.  So how about I go ahead and apologize for how difficult it will be for you to accept my non-apologetic "mama bear" germaphobia. Deal?  Nevermind, you still don't have a choice.


Lots of love and uncountable gratitude

The Chus

Nana teaching Lydia the art of snuggling

Lydia relaxing in her Valentines outfit...trying to figure out why daddy keeps holding up that black clicking thing.

Penny showing off her paci skills

 

Penny vs. Paci

Happy Valentine's Day!

Because you all have prayed for us

From the very start

We would like to offer you

Our very tiny hearts

They weren't exactly perfect

They needed surgeon's touch

But we want you to know that

We love you very much!

   Happy Valentine's Day from the Chu girls!!!

 

02.12 Update

The days of the crazy bells, monitors and sounds are slowly crawling to an end.  The unnerving feeling of a situation waiting around a corner still sits with me and I have to shake that feeling off because the truth of the matter is that these girls are growing and going in the right direction.  They are finally losing pieces of equipment bit by bit, mainly Penelope.  One thing gets shut off or taken away bit by bit.  It's been another quiet day here in the NICU and we can't be more grateful.  So quiet that when Bethany went out for a baby shower today, I went home and pressed out on a run, albiet a painful-getting reinitiated kind of run, but nonetheless refreshing to work off some of the late night eating that we have been doing.

Update:
Penelope 1kg 190g  2lbs 9.9oz

The girl's finally playing by the books.  As far as medicines go, she's down to just her vancomycin (antibiotics) and ursodial (bili medicine).  When the last dose of vanc is given Sun. night, she'll be getting rid of that IV which hopefully she'll take to it like she did the removal of the PICC line and grow even stronger.  The PICC really was causing more harm than good in this situation because since it's removal, she's continued her journey upwards.  It's hard for the body, especially such a tiny one, to have a foreign object like that inside of you for so long, as beneficial as it is.  It's the main line that continued to give her nutrients when she was on the ever so slightest of feeds.  Her goal now is to grow and get big which won't be hard at the rate she's being given her food!  She's up to bolus 20cc's of feed over two hours with one hour break, every three hours and that's momma's milk with 25calories in fortifiers!  It's truthfully close to eating a burger, fries and shake every 3 hours - a lot of calories!  The rate at which they grow here is astounding! She's also stooling well with "man poop" diapers with the color finally changing from a darkish yellow to the more brighter yellow that is normal.  She's also been given the opportunity to have a bottle every shift with 5cc's of milk.  Bethany gave her the first one, two days ago and I got to give her one last night and tonight.  It's so fulfilling as a parent to feed your child, especially after not having that opportunity since their birth.  While Bethany was holding her last night, she was rooting around (sticking her tongue out and mouthing around for food) trying to find more food than what she had been given, so Bethany decides that she'll give her a taste of the real deal.  The girl latched on without any help almost immediately!  Such a smart girl!!! The only thing holding her back is her mouth size is too small so Bethany's waiting for the lactation specialist to help her out.  She's moving on up!! Dr. Krishnan believes that she could be homeward bound within a month!  Woot!  Which is about right, with the plan to go home as close to the original completed gestational date as possible (March 15th).  Currently the concerns left on the table are A'sB's (which will be an issue for a number of months even while they're at home), her bili number, her inguinal hernia, the dimpling on her back, and continued digestion health and development.  The hernia and dimpling are things they plan on doing the closer she gets to leaving with the thoughts that these things aren't going to get worse over the next month.  There's even talk about moving her back to The Pavilion if there's nothing left but feed and grow.  This would be a huge help because...

 Lydia 1kg 910g (they gotta be twins) 4lbs 3oz

might be coming home in as little time as ten days!  *shock* yes, it's true that this might be happening very soon and oh man, are we freaked out!  Lydia has been a champ, taking 31cc's of milk with fortifier within her 15 min. time frame the last two feeds.  I fed her tonight and she gobbled it up quick!  She was so mad before I gave it to her, yelling and crying louder than we've ever heard her cry.  She's on an order right now of every other feed still to have either mom or bottle which is tiring her out a bit more but she's getting more and more use to eating by real PO rather than by NG.  I'll have to admit, it's been a lot of fun having her in this stage where we can dress her up, put fun sheets in her bed and have her out of the giraffe bed more.  The nurses say as soon as she can hold her temp properly, she'll be moving to a radiant warmer bed which is an open top bed.  We'll have even more access to her, without the concerns of keeping the humidity inside the bed.  Medicine wise, she's off her caffeine dosage for over a day now, she's on a single 24 hour dose of Previcid for her refluxing - which has helped a TON! and of course getting her polyvisol (multivitamin) by NG.  She's getting so big, in the preemie sense!  It's quite hard to imagine that people don't go home with four pound babies but rather 6-10 pound babies!

And so brings us to the conclusion of today!  What a blessing today has been, being filled with joy with these two lives that God has chosen to bestow upon us.  What a learning process we are continuing to go through.

Specific Prayer Requests

• Penelope to continue tolerating feeds, having poopy diapers.
• Penelope to develop the proper suck, swallow, breath technique.
• Penelope to not have any more infections.
• Penelope to be done with IV's (blood transfusions, medicines).
• Penelope to not have any issues with her hernia and the dimpling on her back.
• Lydia & Penny to continue getting bigger and stronger
• Lydia to keep up with her feeds and SSB technique
• Lydia to get out of her incubator and in to an open air bed.
• For us to be mentally prepared for Lydia to come home as well as getting our house prepared for her arrival!

A continued thank you for you all who are still journeying with us and learning about these little lives along with us.  We're entering the home stretch!

02.10 Update

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

Lydia - 1810g ( 3 lbs 15.8 oz....c'mon...just .2 more oz to 4 lbs)  Penelope - 1160g ( 2 lbs 9 oz)

Today has been wonderful.  Relatively quiet and no bad news!  Penelope's blood panel came back as IGG and EBV positive, which sounded really scary to us.  It turns out that I had been exposed to mono and the girls got the antibodies from me.  So that's good news.  Lydia continues to take full feeds from a bottle and today she got a full feed from the breast.  Penelope also took some milk from a bottle today.  She drank all 5 ccs that the doctor said she could have and still wanted more.  I guess these girls got my talent for eating! She's also off of her TPN (IV nutrition) and is getting individual supplements as needed.  They also got their eyes examined again and were still looking good for their gestational age.  So all around, good news!

Last night I was kangaroo caring with Penelope and let myself really tell the Lord thank you for her little life.  I nearly drowned her with my tears.  I know we've said we're grateful and we are, but last night it just really hit me that this precious little girl is nothing short of a miraculous gift directly from a loving God who heard our prayers and all of your prayers and granted us what we begged Him for.  I hope I never get over it.

Specific Prayer

• Penny's bilirubin to continue to go down
• Penny's transition to all breast milk full feeds
• Penny's IVs to last longer than a few days since she has no PICC line anymore for meds
• Both girls to continue to eat well and grow well
• Both girls to transition to keeping their own body temperatures up

Penny taking her first bottle like a champ!

Technically our first family picture....see...Penny and I are in the back

And technically our second family picture...this time with Jonathan and Lydia in the back

For those of you who play the "don't look" game....I think Lydia just got ya! For those of you who don't play it, congratulations on your maturity. For those of your who know sign language, I promise to wash Lydia's hands out with soap when I'm allowed.

02.09 Update

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

Phew...that corner took a while to turn but here we are.  Both of our precious babies have stepped up their games and we couldn't be more proud of them!

Penelope is doing exceptionally well on her high flow canula (the clear tube under her nose) and is very much enjoying her freedom to move around.  Earlier today we found her trying to crawl to the top of her incubator!  She's got her energy back and has been showing us with little fits and lots of crying.  The most beautiful sound to our ears after a month of not hearing anything from her. Her color is looking better and they'll be checking her bilirubin levels in the morning.  The doctor here decided to hold off on the ultrasound for her back until she's bigger.  The reason is that for this kind of ultrasound she would have to be taken down to the machine and having just been extubated she's still a little too sensitive for that.  Obviously if there is a problem it's not impeding her mobility at all (see aforementioned crawling) and when the doctor examined her she didn't seem to have any malformations internally with her spine.  So, today has been quiet.  Except for more crying...welcome crying.

Lydia made history today.  She took her first full feeding form a bottle!!!  I think it's her daddy's excellent bottle feeding skills, but she claims its because she's a big girl.  It was a whole 31 ccs which is just over 1 oz.  I think that would be equivalent to me eating a 2 lb hamburger (don't check my math..either it's way off, or you'll know how much I weigh).  We expect she'll tip 4 lbs tonight.  She was put on baby prevacid for her reflux and it seems to be helping a bit. You'd have heartburn too if you ate a 2 lb hamburger!  She also has been trying to escape her incubator more often.  I think Penny actually picked it up from her.  Multiple times we've found Lydia with her hands on the portholes of the bed. I think we might be in trouble.

As for us, we're doing very well.  Today was my last day to work for this school year.  It's a strange feeling.  It was especially strange that it ended up being a half day because of the snow.  Just one more little bonus blessing from the Lord.  I wish I could have held on to my gratitude to the school board a little longer, but when trying to drop off my paperwork for leave time, I had a little "run in" at the board.  Nothing major, but I did get snappy with the poor lady who had to deal with me.  Apparently it's policy that the doctor is supposed to fill out the paperwork.  Nowhere on the paper did it say that.  When the lady asked me who had changed the leave start date, I told her honestly that I did.  She told me that I couldn't write on the form myself and that I had to take another form and have the doctor fill it out again.  I can't imagine what my face looked like.  She told me that it's not written on the paper but I'm suppose to know what the policy is.  I was very tempted to just say, "oh, I'm sorry I was wrong before.  The doctor wrote that" I mean what were they going to do, have the handwriting analyzed?!  But no, the Holy Spirit tied my tongue and all I said was "The doctor signed what I filled out to say that they approve what I had written.  Doctors do it all the time.  They're too busy taking care of my 2 sick babies to fill out paperwork.  Now, I understand that that is the policy and that you can't bend the rules for me, but I think it's a ridiculous policy"....man was I mad!  When I called to vent about it to my mom she informed me that life as a parent is filled with fighting the system on behalf of your children.  Maybe next time I can do it without getting so snippy.  Lady at the board, if you're reading this, I apologize.  But I still think the policy is ridiculous.

Specific Prayer

• Penelope to keep doing so exceptionally well
• Penelope's hernia to heal on it's own and for it not to be painful for her
• Penelope's little back issue to be nothing
• Lydia's heartburn to go away
• Lydia to continue taking full feeds from the bottle or from Bethany

Mommy Penelope bonding time

Lydia and Panda Pal bonding time (she actually held it's hand...paw...whatever)

Penny and her glowworm doll...used for size comparison

Lydia with her glowworm

Lydia trying to sneak out

Lydia and her MahMah

Lydia with her Daddy and her YehYeh

 Penny's little cry is hoarse after the extubation but it's music to our ears!

"I've got my eye on you" -Penny

"I'm so excited...and I just can't hide it" -Penny

Penny's pretty eyes

02.08 Update

Whoa!!  Big morning here in the Chuplicate room in the LeBonheur NICU!  

PENNY WAS EXTUBATED THIS MORNING!!!!!

AMAZING!  What an incredible feeling to be able to see your child's face without this crazy tube contraption sticking out of her mouth.  Here... why don't I just show you!

Yah... she's freaking out in this picture but who wouldn't be freaking out if the tube that had been down your throat for a month finally came out.  Her poor little raspy cry is warming, heart breaking and empowering all in the same.  She'll be on high flow binasal canula for a while, around 3L and 30-21%(room air) O2.  She's fighting stronger than ever now that she doesn't have her intubation tube and with her PICC being out due to an infection of the line, we can tell it's all making a difference.  The PICC grew gram positive cocci staph epi. which is different than what she had before.  She still needs her PICC so she will be getting it back in about a weeks time once she's done with her antibiotics (vancomycin.)  She's still getting ursodial for her conjugated bili number, which is decreasing nicely.  She's still, as from the pic above, a nice dull yellowish tint which Dr. Krishnan says will go away once her bili numbers get out of the teens and bellow 5.  Her feeds were increased just a bit and are still continuous which hopefully she will begin to get switched to more "bolus" feeds.

And of course, is the NICU life, some ups must come with some downs.  Last night, the nurse saw an inguinal hernia starting to develop in the upper area of Penny's left groin area.  This is a common thing that occurs with preemies and might go away on it's own or if it stays the same size, can be repaired with surgery later on before discharge.  If it gets worse, she'll have to go for the surgery sooner to help correct it.  Also, we noticed this morning what appeared to be a dimpling or a fold of skin that looked suspicious, low on her back right above her tailbone.  The doc said that this might be an indicator for tethered cord (don't look it up... there are LOTS of variables for this and i don't even know how to explain a part of it yet.) and will be further inspected on tomorrow by a spinal ultrasound.  The doctor was sure it wasn't serious because the amount of movement she has in her lower limbs is quite active.  So yet again our we rely on our Faithful Creator to continue knitting our baby together, whether naturally or by the bestowing of knowledge to those that medically knit.

One last cool thing about tonight!  I got to kangaroo Penny for the first time!!!  The same overwhelming response that i had the night I held Lydia, I had tonight with Penelope.  It's an amazing feeling holding such a small human being in your arms, it truthfully is one of those things that will never happen again in life (or at least plan to happen.) There's an incredible bonding that occurs, with all parents of course, when you hold your child to your chest and feel their body against yours.  It's such a strong connection that melts your heart and you can almost feel melded together.  I get the baby "high" after I hold the girls, it's definitely something I'll never ever get used to and never ever want to get enough of.  So awesome!

Our Lydia, she's continuing down her journey of being a "plain jane" preemie.  She's battling reflux, currently, which is a very common preemie thing to deal with but to help with some of the pain she is getting some good ole heart burn meds, prevacid.  She's been ordered to take PO feeds every other feed which is a huge deal for the little girl!  She's never had to work so hard for food before!  Well, we're not working her that hard since she gets whatever she doesn't finish afterwards by tube.  She's been faithfully taking about 6cc's by bottle and about that much from mom, naturally.  She's learning the key principle suck, swallow, breath much better and best when she's breast feeding.  I've been giving her bottle feeds once a shift so it's nice to be able to get some baby bonding time that way.  She's being a champ eater and a champ pooper!  She has this honed sense of timing that whenever I'm holding her, she knows she's comfortable enough just to give me a big ole stinky poo.  Grateful.  Seriously, I am.  Thankful for a little girl that's alive and well that will poop on me.  Love it!

Specific Prayer Requests:

• Penny's lungs to continue getting stronger especially now that she's on hi flow canula
• Penny's hernia to either go away on it's own or to stay small and get fixed later.
• Penny's "dimpling" or "tethered cord" whatever it might be, and for it to be not an issue or something easily fixed.
• Penny & Lydia to continue tolerating their feeds and their little stomachs to handle it properly so that they don't have to battle with NEC.
• Lydia to continue figuring out suck, swallow, breath
• Lydia to not have any issues due to her reflux.
• For all the doctors, nurses and specialists that come to see the kiddos, that we may present to them a character of Christ and a posture of love and respect for what they do.
• For our continued sanity as we begin the process of preparing our home to receive these little ones and prepare our minds to have children not in the hospital!
• For us to continually be grateful for the prayers, blessings, food, gifts, and time that people have invested in these little lives and us.

And now... for something completely different.

"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

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