26 February 2011


By Bethany Chu from iamknittogether.blogspot.com

Things we've learned in the past few days.
  1. Mylicon is a beautiful thing (baby gas relief drops)
  2. Sleep is not necessary
  3. Lydia looooves her Boppy seat with the heartbeat sound
  4. Lydia loooooves to wiggle her arms out of swaddling
  5. Penelope looks adorable in clothes
  6. Penelope loooooves to be swaddled (therefore covering up the clothes..but what she wants she gets right now)
  7. God still has strength left to give us when we run out
We've been taking turns going to see Penelope and she looks bigger to us every time even though she's still either maintaining or losing weight the past few days (run on sentence? yes. do i care? no.).  Her tachypnea has gotten better, but she was put back on the high flow oxygen because she kept having desating issues.  When the night shift nurse came on duty she suctioned out a HUUUGE..uh...shall we say...mucus extravaganticus...and her sats got better. She's still on the high flow but I fully expect her to be off of it soon. Mostly because I don't think she needed it in the first place.  The BIG news of the day is that Penny is destined for a big girl bed! She's not in one yet, but she's out of her heated giraffe bed and is holding her temperature nicely with clothes on and swaddled up.  I'm so excited!  It's a definite positive move.  Now she just has to get her breathing together, and start taking her bottles again.  These are to big hurdles, but big hurdles are nothing to our little Penelope and her big God.

Lydia continues to adjust well to being at home.  Jonathan and I are having so much fun learning her every grunt and grimace.  Some of them are important and some of them are just funny.  She' loves her mobile and (as mentioned above) her Boppy papazan chair that has a heartbeat sound.  She slept like a rock in it today.  She didn't sleep well in our quiet room for the first few nights.  I guess it was just too quiet.  We just can't wait to have both of our girls home so that we can get settled into the chaos that is our new life.  As a mother of twins told me today, the order is baby, bed, then bath.  So for me, ponytails are totally in this season! 

On a completely different note, and speaking of notes, I'm trying my hardest to eek in a few thank you notes whenever I can.  If you've given something for the girls, cooked something, done something, or just been awesome, and haven't received a thank you note, please know that that is in no way indicative of the level of our gratitude for you.  There's a good chance you'll get a thank you note...and there's a good chance you won't.   Please don't take offense either way.  What a wonderful blessing it is to have TOO MANY thank you notes to write!

Ok...Jonathan has Lydia, one of our favorite nurses has Penny, and I am going to bed.

Specific Prayer
  • Penelope's breathing to improve and for her to be off of oxygen before we know it!
  • Penelope to do well with keeping her temp up (as her daddy says....she needs to be a hottie)
  • Penelope to get stronger and to gain weight at a faster rate
  • Lydia to sleep, eat, and grow well
  • Lydia to be protected from any illnesses
  • Jonathan and me (and our moms who have tirelessly been helping us) to have supernaturally restorative rest

24 February 2011

02.24 Update

Well, maybe it's clear by our lack of update, but things have been a bit busier with little miss Lydibug home.  It's a good kind of busy though.  Lydia is adjusting wonderfully to life in the real world.  We've had doctor's appointments both mornings she's been home.  Eye doctor yesterday and pediatrician today. Both appointments went well, and I can't explain the pride I had walking into a public place with her in the carseat.  I felt like "hey everybody!  she's here!  aren't you excited?!?!"...but no one seemed quite as excited as I thought they would be. Oh well, their loss.  Her eyes are actually improving (zone 3 from zone 2..for those of you who get what that means) and she weighted 5 lbs even today!  She's waking up every 3 hours hungry and eating really well, burping really well, and pooping really well. We're so proud.  It's so much more natural feeling than I expected.  It's like she's where she belongs. Because she is.

Penny is holding steady. Literally.  She's still tachypnic and has been losing and gaining weight to the point that she's just maintaining (1400 g today).  She looked bigger to me when I went to see her today,  but her weight is the same.  She's really starting to look more like Lydia everyday.  Because of her tachypnea she can't take her bottle feedings.  They've done an x-ray so hopefully that will shed some light (get it? rays...light) on the cause of the breathing issues.  She also was seen by the surgical team and they've decided that her two inguinal hernias will need surgery before she goes home. They anticipate her growing enough in the few weeks left that she'll be able to handle the surgery. So, rather than Pedi-flight her to Germantown and then back to Lebonheur, she'll stay at Lebonheur until she comes home.  This will be a little farther away from us, but it won't make it any easier to leave Lydia even if it is a slightly shorter drive to Germantown.  Plus, because of our extended time there, we've made such great relationships with the staff (everybody from doctors to maintenance).  So much so that they stop in and check on, dote on, and care for Penelope even when we're not there. What a blessing. What a comfort.

I could write pages and pages about all the emotions we've been feeling the past few days.  It still wouldn't cover it.  The main emotion is joy but it's weighed down with the feeling of being torn.  Once again, every moment of bliss with Lydia makes me wish we could do the same with Penelope.  And one day we will.  But today, we took a walk. Just Jonathan, Eliza, Me, and Lydia.  We all missed Penny.  Maybe we should look at it as a chance to have one on one time with Lydia and also a time to look forward to a time with Penny soon.  The truth is, it will be no time before we're all together and we'll be craving alone time with each of them.  It's all about perspective.  Jonathan went to see Penny yesterday and had a few hours of dedicated time with her.  I got to go today and do the same.  So I guess that's the silver lining.  We are focused on each girl when we are with them. Which in the end is good for everybody.

Specific Prayer
  • Penelope's hernias to not need surgery until she's big enough to handle it
  • Penelope to start to gain weight and turn the next corner and get home soon
  • Lydia to be safe from germs that would be harmful for her
  • Lydia to continue to grow and thrive
  • Jonathan and me to handle everything emotionally
Just a few pictures of Penny and her favorite doctors.

 Penny trying to look pitiful

 Dr Goodwin-Samson

Dr Ravi

22 February 2011

2.22 Lydia's Home!!!

One down one to go!!!!

Our sweet Lydia got to come home today!!  It's such a bittersweet feeling to be overjoyed to have her where she's supposed to be and at the same time being sad that Penny can't be here to enjoy it with us.  We know that she's in the best of care and that she'll be home before we know it...but it doesn't keep us from wishing we could all be together sooner. 

Penelope's ultrasound on her head and spine today both were normal.  Oddly enough, when Lydia's diaper was being changed last night at the hospital we noticed she had a very similar dimple at the base of her spine but hers was mostly covered up with her cute little booty!  Our favorite Dr diagnosed it as "funny booty crack" and said there was no known treatment.  So at least Lydia has a strange diagnosis too!

And to add to the hilarity of it all...once we got Lydia home and settled, we were washing some dishes in the sink and discovered that our disposal and all of the food in it was backing up behind our washing machine...and smelling like old pork.  Yum.  And we thought the dirty diapers were smelly!!!  Jonathan jumped into action with my lovely mom at his side and they are working on it now...but I just think it's funny.  What timing!

On a more serious note, I just want to stop and praise the Lord for all of the miracles that He has done to get us to this point.  They are countless.  In all of this commotion of re-learning this new phase of parenthood, I don't want to forget how far we've come and how grateful we are and rightfully should be for every single breath our girls have.  Thank you so much for praying with us and journeying with us so far.  Please please don't stop now!

 "I'm ready for my close up!"

 some of our fantastic friends from Lebonheur

 part of the nutrition team (Ruth (the world's best lactation consultant) is on the far left)

 "uh...guys....what's going on?"

 Ms. Jane...PCC extraordinaire

 One last visit with her sister before we left

 Daddy's view on the way home

 Lydia was impressed with the ride home - her second trip down Poplar Ave

 Nana was here to welcome us home


 Eliza was very excited to meet her little sister...Lydia was only mildly interested

Lydia and her Aunt Shelli...the first of many snuggle times for them

21 February 2011

2.21 - Una Bomba De Fotos - Muy Grande!

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

19 February 2011


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

18 February 2011


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

16 February 2011

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!

14 February 2011

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!!!


13 February 2011

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.

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!

11 February 2011

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

09 February 2011

02.08 Update

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


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