1.26 Afternoon Update

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

Well it's another "step back" day. Maybe we'll get another "step forward" one soon.

Penny's chest x-ray shows still more fluid on her lungs, so they're having to not go down on her oscillator settings but go up.  They're also having to give her another round (her 3rd) of diuretics (Lasix) to help clear it out.  This is disappointing, but the doctor said he was kind of rushing her before and she's letting him know that she's not ready yet.  When her body is ready she will let us know.   We just have to be patient.  The good news is her second set of cultures still hasn't grown anything from the PICC line so it doesn't have to be removed.  That's an answered prayer.  She is going to have her 5th blood transfusion today because her hematocrit was low.  They are going up on her feeds though so that's another good thing.

Lydia was having more and more desats so last night she was put back on the oxygen canula.  Dr Ravi said to take it off of her this morning because it's really having no positive effect on her number of desats.  I'm in favor of taking it off..and so is she.  She keeps trying to pull at it. It totally doesn't go with her outfit.  She is also getting a blood transfusion today (her 1st as far as I can remember) because her hematocrit was 19, which is super low.  She's been making some of her own blood but not enough.  Other than that she's doing ok and they are increasing her feeds too.  We're hoping to get to work with the speech therapist today on getting her to bottle/breast feed. We're just waiting on the order to go in and to get scheduled with speech.

You guys have been so sweet to ask so often what you can do to help, and we've finally found something you can do!  We've been asked to get our friends and family to donate blood to LifeBlood on behalf of Penelope and Lydia to replace the blood they are getting. LIfeBlood is such an amazing organization that has provided just what our daughters needed when they needed it.  They can only do that if they have people to donate.  So if you have a spare minute and want to go by LifeBlood, just let them know that you're donating on behalf of Lydia or Penelope (not direct donating) and you'll be doing us, LifeBlood, and a patient in need of blood somewhere in Memphis a great favor.

OK...Specific Prayer:

• Penny's  progress towards getting off the oscillator
• Penny and Lydia's digestive systems to work properly with increased feeds (protection from NEC)
• Lydia's desats to decrease 
• Our discouragement 
• the Doyles as they have visitation this evening and the funeral tomorrow

The Chus

The Bearers of Water

If you've ever been crazy enough to challenge your body and use it to run/bike/swim obscene amounts of miles then you will understand what I'm about to talk about.  If not, then find someone to hold a cup of water half way between a point A and a point B where you think it's too far and you'll understand this analogy.  I've run a number of 5k's and scarily enough, dream of running a marathon.  Yes, there's something absurd about making your body carry itself over endless moments of concrete and asphalt but yet within the absurdity lies a great urge to feel the rush of adrenaline pushing you over a finish line.  It's euphoric, and no, it's not the lack of oxygen flowing to your head because you've just run 26.2 miles, it's the high that you've trained yourself, disciplined your body to propel you through unnerving hours of muscle clenching, joint straining, and feet burning repetition.  But during the race, that fortress of solitude known as your head, begins to play tricks on you as you pound the pavement.  You see, a marathon is a mind game because if you've trained your body and have prepared it for what it's about to do, it will do it.  But your mind, those electrical signals firing through neurons in your brain, will tell you differently because it's truly in there where the race is happening.

You start the race enthralled by the sound, the electricity in the air, your pulse gliding through the weighted waters of nerves.  Your heart, leashed by the cage of your body, tries to escape through your ears. You hear the countdown, the hubbub around you lets you know that the moment draws near to let loose the mustangs that you've had fenced in and BANG! the gate breaks open and they begin to pound the ground in desperation.  You hear the cheers all around you, the crowds screaming for all to run well, to race with the best you have.  The noise is deafening and the sound of feet stomping on the asphalt is one of metronome-esk rhythm but as you get further away from the start, the rhythm begins to thin to sound like rain starting to fall on a roof and then, it's just you.  Your heart beating in your ears and your feet pushing off the street is all that sings to you.  The music of the race.  It's in this early part of the race that your mind starts throwing the mental hurdles at you.  "What am I doing? Why in the world did i decide to do this?! I've only gone 5 miles??  Great!??!"  It's during this time that you look around to see who's pacing with you, or rather, who you can pace with.

For the most part, you're alone and keeping yourself company as you discuss the reasons why you are currently doing what you are doing.  You begin to doubt the possibility that you will ever make it to the end and around the time that you want to sit down on the side of the road and give in to what you think is exhaustion, you see kind people standing ahead with cups of water and cheering words of perseverance.  As you run pass, they pass you a cup and you automatically feel a new energy.  You haven't even had a sip yet but transference of the coolness into your hand gives you jolt and you know what it is about to do for you as you slowly let the water trickle down your throat and on your face.

This is exactly where we are in this journey with our babies.  NICU life is a marathon and we're currently at our questioning phase of the journey.  A month in and the feelings of desperation, frustration, some hopelessness are starting to set in.  "Are we really going to be here another month to two months? Is our baby really going to make it out ok? Do the doctors and nurses know what they are doing?  We have two babies...?" But thanks to so many of our family and friends who constantly are pouring their wisdom and knowledge in to our lives, we grab a cup of water and we continue to press on, even with our doubts pushing the tears on to our faces.  Even though many are around us cheering and encouraging us, the mental solitary mind games that we must face are what ultimately we will have to battle through all of this.  We stand and run this race, not for our girls because our perseverance really won't do anything for them, but for Christ to be magnified through the journey.  For the outcome of this marathon isn't whether our babies are here with us or not, it's whether or not the Creator of these lives was glorified through the trial.  The enjoyment of the lives we have is merely His blessing to us.


"And this city shall be to me a name of joy, a praise and a glory before all the nations of the earth who shall hear of all the good that I do for them. They shall fear and tremble because of all the good and all the prosperity I provide for it."
(Jeremiah 33:9 ESV)

May we be a city on a hill that proclaims the name of Jesus through our doubts and our fears.  No man knows the future but we know our response with whatever the future may hold.  May the names of our girls not laude the name of a doctor or nurse or a hospital but rather may they bring a shout of praise and glory to a God that has delivered them.  For He has provided for us in more ways than we can count and we tremble at His goodness.  We know of the good He provides and we sing of His glory. He is the Bearer of our Salvation and the Light of our winding path.

Soli Deo Gloria.

1.25 Update

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

First of all, thank you for praying for the Doyle family.  Little Faith passed away last night around 8 o'clock after a full day of being loved on and gently ushered into heaven by her family.  We weren't there, but we hear it was a sweet time and I'm so grateful on their behalf that they had that gift.

There is very little change today for either of our girls, which is starting to wear on us.  Penny is still not responding well to being weaned from the oscillator.  Lydia is doing fine and has already been moved down the hall to our new set of rooms, but Penny can't be moved until she's at least on the conventional ventilator.  I didn't expect it to be so difficult for me to have them separated again. I mean it's just a few steps down the hall, but it makes it impossible for me to feel like i can relax in either room because I feel like I should always be going to see the other one. 

It's especially difficult with one baby doing well and the other struggling.  It makes it complicated to fully enjoy Lydia's successes without being sad that Penny isn't having it as easy. We're both just getting a little impatient and disappointed with the situation.  I know this is just the beginning of parenting 2 people at once, but I wouldn't want these feelings to go undocumented because I was afraid of appearing less than pulled together.  The truth is, we're not pulled together and neither are you.  So why should either one of us try to cover it up? That's right. We shouldn't.

Specific Prayer:

• sweet little Penny to get her cute little butt off that oscillator
• Lydia to gain weight and begin her transition to bottle/breast feeding
• Jonathan and me as we learn how to deal
• the Doyles as they figure out how to carry on with life

Thanks so much for allowing us to be "not pulled together" with you.

The Chus

Happy Month Birthday! 01.22

It's truthfully hard to believe that my girls are a month old.  They've officially hit 33weeks on Tues. and there getting bigger every day.  It feels like we've had them for much longer than that already but at the same time, it's felt so short!!

We've had a really calm day today in the world of the girls.  This afternoon though we had a wonderful baby shower for the girls at our friend's house today and got to spend some time connecting with our non-medical personal friends.  We're so grateful for all of their kindness.

Lydia

• Trucking along fine and dandy.  She fed well today and had some nice poopy diapers!  
• We're continuing to watch for any signs of NEC but so far there haven't been any.
• Bethany got to kangaroo today! But not just Bethany, I got to have my first kangaroo session with her!  It was absolutely the greatest feeling I've ever had.  Holding my child on my chest for the first time ever.  Definitely a moment, I'll never forget.  Can't wait to hold her again!

Penelope

• Hasn't had a lot happen today in the world of the oscillator.  She's still floating up and down on her O2 levels but hopefully working her way down.  
• She responded a bit this morning to us, talking to her, reading her a story and praying with her, which are signs that she's aware.
• Her antibiotic has been change to a more specific one to help give her kidney's a break
• The bug that was growing in her tube and has been identified and the antibiotic is the same still for that.

We're going to go to church tomorrow which is always good for our weary souls.  I'll make sure to have a nice big photo bomb tomorrow!

1.21 Update

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

Today has been a relatively big day for both girls in a good way! Penny was taken off of her fentonyl that has been keeping her somewhat sedated.  We've had a few open eye times and a lot more moving around.  Her chest x-ray showed no pulmonary edema and Dr Ravi said that if she can get weaned to a certain point on the oscillator that she could go back to the vent!  They're checking one more blood culture from her PICC line to make sure that that is the source of her infection before removing it. We're hoping that it isn't the PICC because she'll have to get another PICC once the infection is cleared anyway because she still is on IV nutrition as well as other medications that can't be given by mouth. I'm pretty sure that was a runon sentence. 

Lydia, on the other hand, had her PICC line removed today because she doesn't need it anymore!  She's completely on breastmilk through her NG (nasogastric) tube and her caffeine is now being given to her PO (by mouth).  She's a big girl now!  She also had her first attempt at practice breastfeeding.  She did really well and even latched on a couple of times.  The feedings will have to be done by bottle first to see how she handles that kind of feeding and then we'll transition to full breastfeeding.  It was really a thrill for me to be able to do something only mommies and babies can do. Precious times.

That's all the news for today!

Specific Prayer:

• Penelope's infection to clear up and for her to feel better
• Penelope's being weaned off the oscillator and onto the conventional ventilator
• Lydia to continue to improve and not need any meds through IV
• Lydia to continue to tolerate feedings and have regular stools (sounds better than poop)
• Jonathan and me to continue holding on to the Lord for strength

Love,
  The Chus

01.20 Evening update

With some rough days behind us, we had a semi normal day today.  It's been a rough road, feeling like a week had passed but really only two days.  That was an intimidating realization knowing the extent of this ride.  But to hear that Penelope's numbers were good this morning, was a huge relief.  Tonight's update is going to be short but sweet because truthfully, i'm mentally exhausted.

Lydia - 1370grams (2lbs 13oz)

• Her numbers have been good and have been holding steady but she has been having quite a number of apnea sessions which in turn lead to brady's. So they don't want that anymore!  They're giving her dose of caffeine in two sessions now instead of one.
• Her feedings have switched from continuous back to bolus pushes over an hour and then off three hours to help her get adjusted to regular feedings.
• She's still stubborn in the waste management area but we're hoping she gets her workers to go off strike.
• Her renal ultrasound showed that her kidney's were working just fine and that there weren't any issues.  The concern was present due to the presence of her ear tag (an extra growth of skin around the ear) which, we were told later that the ear develops as the same time as kidneys so if there's a visible variant then there might be an issue inside.

Penelope - 1030? (2lbs 4oz) in question bec. of fluid build up

• Our poor Penny has had a rough few days.  Her hematocrit numbers were down so she got her 4th transfusion.
• Her CO2 levels have been bad but today it leveled out.  Her last gas was a bit high but it was taken after she had been suctioned which can cause her to get upset which in turn raises her CO2.
• Her pH has leveled out to 7.2 meaning that she's just slightly acidotic but better than where she has been.  No new medicine is being given for that.
• Her fluid output has been good so they stopped her dopamine drip.  She'll have to work the rest of her swelling out on her own.
• Her last x-ray showed that her pulmonary edema has either gotten to a level that the x-ray can't see or it's finally gone!  Yay!
• Her head ultrasound showed no bleeding.  They were worried that there might be something going on because her crit number was down.  Bleeding in the head is a bad thing and they try and make sure that when there's a sudden low crit number that it's not caused by a bleed somewhere.
• Her echo showed that her heart was looking great and was confirmed by our cardiologist, Dr. Becker after she heard that she was having some struggles.  It was really kind of her to come up and give us a bit of hope that nothing was going on because of her heart.
• She's still trying to be weaned off the oscillator but she's still not coming off of it as fast as they'd like.  
• Her infection was confirmed to be MSSA (Methicillin-Sensitive Staphylococcus Aureus basically means that it is antibiotic sensitive) but she has another infection going on that is gram negative rods which they haven't identified yet.  The antibiotics that she is being given are the two strongest and usually kill any gram positive or negative bugs.  Because of this, it can explain a lot of the other things that are going on because her body is bunkering down while fighting the infections.  Her lethargic nature, sensitivity to sounds and touch, her chemistry all can go back to the infection.  

And so these are our prayer requests tonight!

We have so many things outside of these downs that are praises, God providing a place where amazing care is given through the nurses, practitioners, doctors, specialists, therapists, pharmacists, social workers, clergy, consultants, and alumni of this hospital.  The support from our friends, family, church family, coworkers and those we don't know that read our story help keep us afloat through this emotional hurricane.  We wouldn't be able to continue this story in a sane manner without all of you who are journeying with us.  Thank you.

And... of course, some pictures.

A nurse friend, CJ, made the girls little bows today to put on.

Penny's bow.

Lydia's bow

DSC_2876-2

DSC_2876-2, originally uploaded by chucreative.

In awe of the magnificent creative power of our God.

My Kid's Definitely Cuter

Lydia sometimes gets the hiccups.

The past two days have been relatively quiet with a few adjustments here and there.

Penny, still on the oscillator is every day fighting to get off the machine. Her blood gases have been floating in the normal range with a few high pH's. She has her desat moments and has to go up and down on the O2 settings but she spends most of the time floating around 24%. She's still hanging with the vancomycin but as of tonight, her second blood culture has turned up nothing!! Yay!!! She'll continue to be on the antibiotic for 7-10 days, which she's been through at least half those days already.  

Lydia has had a few A&B sessions the past few days but the nurses all say that it's fairly common for preemies even though she's been responding really well to most things that she's been put up to.  She's completely off of nasal canula!!  Woo hoo!  The times that she has her big sessions are when she clamps down and forgets to breathe and then her vitals tank.  We go lift her up real quick, tilt her forward and rub on her chest to get her to start working those lungs again.  She's continuing nicely on her feeds and we still wait to see what she does with those poops.  We're also still grateful to get the opportunity to kangaroo every day!

Speaking of kangaroo... during kangaroo time today we had a very interesting guest.  Along with a number of his colleagues and aids, the PCC Mrs. Thompson, and some other Le Bonheur specialties, we got to meet Joe Leonard Jr. - Asst. Secretary for Civil Rights at the Department of Agriculture.  He was in town, i believe, for MLK events at the Civil Rights Centre and had wanted to stop by to see LeBonheur.  Our PCC gave them a tour and while walking by our room, was explaining the twin room to them and a little about us.  I asked Bethany if she wanted to invite them in since she was kangarooing (it can be a bit exposing if not carefully covered) and she said yes.  We met Mr. Leonard, who was very kind and cordelle, and he asked us how we liked being at Le Bonheur.  We gave our honest praises and gratitudes for this amazing place and he was glad to hear it.  And as soon as they arrived, they were gone.  I hadn't even thought about a picture until it was too late but it was a very unique moment for our memory book!  

And now... i should probably rest.  

But seriously.  My kid's way cuter. 

01.16 Update

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

Everybody's favorite Chus (Lydia and Penelope of course) would like to thank everyone from the bottom of their tiny and surgically repaired hearts for the prayers and support they've received.  If they were able to type they would say so I'm sure.  For now you'll have to trust me.

Penelope is still on the road to recovery after her surgery.  It's been a little tougher for her than it was for Lydia as she's had to have a few doses of pain medicine to keep her calm.  She's still on the oscillator and slowly but steadily being weaned and tolerating it pretty well.  She was started back on small feeds that will be increased over the next few days which should make her a happier camper.  Her third blood transfusion went in yesterday so that should make her feel a bit better too.  Her little cheeks are starting to fill out a little more everyday and she's still not afraid to use her arms as weapons at any nurse/respiratory therapist/lab tech who dares to disturb her.  She's starting to get a reputation!  The best news of all is that the endocrinology team here put her on once a day blood sugar checks because she's been holding so steady without any insulin.  This is a HUGE praise!  That transient congenital diabetes never knew what hit it!  I must have been Penny's arm!

Lydia.......drum roll please.......pooped!  Twice!  She's an over-achiever.  Her feeds were increased and she's had very little or no residual (left over milk in her tummy from the last feed when it's time for the next one) so it looks like her little system figured things out.  There's something very intimate about thanking the Lord for poop.  So join me in doing just that.  She's also been off of her oxygen for almost 2 days now.  I didn't want to say anything before for fear of jinxing it...we were even referring to it being O-F-F around her so she wouldn't "know".  Her canula's been completely taken off and the only tube she has left on her pretty little face is her feeding tube which goes in her nose.  We're really very excited about this milestone being reached, mostly because I personally didn't expect it to come so soon!

On a more personal note, I plan to return to work on Friday (not full time, probably 1-2 times a week) in order to keep from going on official maternity leave until the girls come home.  I'm already finding it difficult to juggle in my heart all of the things that come with having preemie twins in the hospital and I'm not sure if going back to work will be a welcome distraction or if it will be just way more than I can handle.  I've already been jumping on the "grumpy train" more times that I'd prefer and would like to figure out how to manage this stress without it turning me into a basket case.  Today's plan of attack (POA) was church, food, nap, then go to the hospital.  It worked pretty well.  Yesterday's POA was chocolate ice-cream and crying.  That worked too.  It seems the theme were is flexibility....and food.

Briefly about food...we have TONS.  Don't worry about us not eating.  We have almost as many leftovers as we have adorable pink outfits!  We'll let you know if we start to run low :) 

Specific Prayer:

• Penny's comfort and peace as she's healing
  
• Penny weaning off of the oscillator
• Penny tolerating more feeds
• Penny's bloodsugars to stay stable
• Lydia tolerating feeds better
• Lydia to remain off her oxygen
• Both protection from NEC
• Both strength and growth
• Bethany staying off the "grumpy train"
• Jonathan protection from Bethany and the aforementioned train
  

01.14-15.11 Update

Since Penelope got a whole day to herself yesterday, I'll start with Lydia's update.

Lydia - 1.210g (2lbs 7.50oz)

Lydia's day yesterday was focused on the most notorious thing about babies.  Poopy diapers.  For Lydia though, it was the lack of one.  Since you've chosen to follow us on this journey, some things that you don't really want to discuss have to be discussed.  Since her surgery she hadn't produced a nice poop yet, which the doctors actually care about!  She was having some aspirate that was all milk so it was a sign that she wasn't digesting anything and it was just sitting in her stomach.  The nurses look at weight, how much, what color all of that is the same as when you bring a new baby home, they watch as well.  So that was the goal for Lydia yesterday.  But near the end of the first shift though she hadn't really produced a deuce yet so she had to have a bit of "encouragement" from the nurses.  She was given some medicine that, within due time helped pass the situation.  She looked much happier after that and had little to no aspirate.  Today she hasn't had any saggy britches but she's eating well with small amounts of aspirate again.  Our continued concern is the NEC and obviously a well working digestive system to help her produce waste normally.  Aside from that Bethany has been kangaroo caring with her every day for at least an hour to two which has been a wonderful experience for both of them!  We're praying for continued stability and growth.

Penny - 860g (1lbs 7.90oz)

After the eventful day of surgery yesterday, Penny had a relatively uneventful evening.  There have been a small number of speed bumps in the road to recovery that we're praying she will quickly be over.     Some of the things that have happened today.  This morning her culture from a few days ago revealed that she did in fact have an infection.  Gram positive cocci that was identified as the common staph that they see here.  The antibiotics that she is on though is a broad spectrum one that takes care of 99% of all bugs here in the NICU.  It's so difficult to stay completely sterile here in the NICU.  We scrub a good two minutes before coming in, we use foam alcohol between touching each baby to keep from cross contamination as well as after touching anything at all.  Nurses use all new everything, gloves, masks, tubing, syringes and bedding when working with the girls.  But even with all of that, there are germs everywhere that can get in to the body, especially since they have so many foreign objects running in to them.  So the doctors will continue to watch the cultures that they took to see if they continue to grow anything.  

Penny was moved from a traditional vent machine to an oscillator.  Some see this as being a step back from the vent but the nurses feel it's more of a lateral step.  Not worse, not better.  The oscillator is a machine that continuously puffs air in to her lungs, causing the alveoli to stay inflated.  With the traditional vent machine, imagine a balloon being blown up and released over and over.  With time the balloon loses its flexibility and begins to look flabby and no longer taut.  This is what the vent can do to the lungs as well as irritate the alveoli over longer periods of time which is not what they want!  The hopes is to wean her off the oscillator over the next few days so it's really up to her to start using her lungs again and working to keep her saturation levels up.  The edema around her lungs is still there and they are still administering the Lasix drug to help work that out.

01.15

Today, so far, has been relatively quiet.  

Lydia has had a few apnea sessions which is more normal for her case but is still not digesting properly. The nurse just drew back around ten cc's worth of milk from her tummy so they will be holding feeds for three hours. (two left now) 

Penny is being weaned off of the oscillator bit by bit and is now getting a tiny bit of milk to start her back on feeds.  

Specific prayer requests for:

• Penny to have less edema around her lungs and to start working her lungs more so she can be taken off of the vent all together.
• Penny to fight off this infection.
• Penny to start adjusting to feeds again and to start gaining more weight.
• Penny to not have any issues with NEC.
• Lydia to start digesting properly and to start making poops (weird but necessary!)
• Lydia to be fully weaned off of O2 and to not need her nasal canula anymore.
• Lydia to also not have any issues with NEC.

We're thankful for this calm day and are trying to catch up on some rest!  

Thank you for continuing on this journey with us!

The Chus

Out from Sugery

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

Thank you for praying! Penny's PDA surgery went well and she's not having the second surgery today! There is a slight coarct but not one that is causing any complications right now.  She'll be monitored closely over the next months and years, but for today, she's doing great!

The surgeon said that her ductus was twice the size of her aorta...that's HUGE!  She should feel much better now with that blood flowing the right way.  Praise the Lord from whom ALL blessings flow.  Even if that means the blessing of spending a morning trusting Him. Thank you for trusting Him with us!

Very gratefully - The Chus

 Penny holding her daddy's hand this morning

 Lydia saying "I love you" to her sister

 The surgeon explaining things to us post-op

The whole team...including our favorite neonatalogist on the far right (Dr. Goodwin Sampson)

01.13.11 - Surgery Prayer Requests

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

We've got a plan!  The cardio team here met and decided that Penelope needs to have her PDA closed tomorrow morning at 7:30.  It will be the same bedside surgery that Lydia had, the only difference is that they will have an OR waiting just in case the closing of the PDA causes complications with her possible coarctation.  If they close the PDA and see that her aorta is narrowing (by checking bloodpressures as well as an immediate echo) they will whisk her away to the OR and do the coarct repair surgery (resection with end to end anastomosis) despite her size.  Right now, the complications she's having because of the PDA are such that they cannot wait until she reaches the ideal size for the coarct surgery.  The risks are higher for such a small baby but the risks of delaying the surgery are even greater.  So, this is the plan.

Jonathan and I are, understandably, pretty nervous about this. It will be a loooong hour's wait while they do the PDA surgery to see if she'll need the coarct repair or not.  They say that time flies when you're having fun, maybe time will fly while we're praying our booties off!  We would like to ask you to be praying your booties off too!  Please pray for Drs Goldberg and Knott-Craig (the surgeons), Andrea (his nurse), and the rest of the OR team that will be doing the surgery.  Also, pray for Robin and Amy (the girl's nurses), the neonatalogist,  and the NICU staff that will be caring for her after the surgery.  Finally, pray for our sweet Penny to have comfort and strength, to only have the PDA and no coarctation, and if she does have to have the coarct repaired pray that the Lord would protect her from any complications of the surgery.

On a personal note, she's been put on NPO (no food in her tummy) until a few days after the surgery.  This means she'll be hungry and MAD about it like Lydia was.  Please pray that I'll handle it well.  It's actually a good sign if she gets hungry and mad, rather than lethargic.  It just makes it very difficult for us to watch her and not be able to help.

Thank you so much for your prayers as we face this next section of the NICU roller coaster.

Love,  The Chus

First day back on the vent.  Haven't seen her face like this in a week!

Daddy Daughter time

Getting a little hand holding time with my girl

“As for me, I would seek God,

and to God would I commit my cause,

  who does great things and unsearchable,

marvelous things without number:

  he gives rain on the earth

and sends waters on the fields;

  he sets on high those who are lowly,

and those who mourn are lifted to safety.

 (Job 5:8-11 ESV)

01.11 Update

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

We got some fantastic news and some not so fantastic news today about our sweet Penelope.  We'll start with the positive!  Her Turners Syndrome test (as well as the rest of her chromosomes) was negative!!!  We were beyond thrilled about this and so grateful to the Lord for protecting her from that particular hurdle in life.   The less than fantastic news was that she is having some pulmonary edema (fluid in her lungs) which has been causing her more frequent de-sats (low oxygenation in the blood) and also her heart is "generous" which sounds like good news but it really means that it's enlarged.  These are very common side effects of the open ductus and were expected eventually.  We were just hoping to postpone them a bit more.

This is the part we're still a little confused on so if you're confused after reading it then you're in good company.  Well, our company...but I think we're pretty fun!  OK, back to business.  The Aortic Coarctation that we had thought was completely gone, seems to still be a concern.  She has a slight narrowing in the top part of her aorta, as well as a "shelf" near the opening of the PDA but it's not in the place that they normally see a "shelf" (it's not a contraductal shelf for those of you who know what that means).  The cardiologist (Dr Chinn) came and drew us a picture to explain it for the very reason that I'm having trouble explaining it now.  The point is, if they do the PDA surgery just like they did Lydia's it could cause problems with the flow of blood around that narrowing and this "shelf".   If this happens, she would need the more invasive surgery to repair it, but she's not anywhere close to the right size to be able to handle that kind of surgery. The side effects include heart failure, but the side effects of leaving the PDA open at this point include heart failure too.  This is when I'm very very glad that we have the best doctors and medical team possible to help guide us in this decision.  Tomorrow there is a meeting of all the cardiologists and cardiovascular surgeons to discuss all the cases they are treating right now.  Penelope's case will be discussed and they'll come up with the best plan of action.

In the mean time, Penny's been intubated to help her breath around the pulmonary edema.  The silver lining on that is that her big 'ole CPAP apparatus is gone and we can see her pretty little face!  I don't have any pictures to post right now but we'll get some a little later and put them on the blog.

Lydia is holding pretty steady.  She's still seemingly unexplainable angry and throws fits often, but if I were in her situation I'd be pretty mad about it too.  Today she was throwing a fit that she was having trouble calming down from so we went ahead and did kangaroo time and she calmed down immediately.  That did wonders for me feeling like a mama, and for her stress level! 

Something we haven't mentioned before but should go ahead and start praying against is the possibility of them developing Necrotizing Entercolitis (NEC).  Very simply, it's a pretty dangerous complication of prematurity that effects their intestines and requires invasive surgery to repair.  It normally happens around this time a couple of weeks into life when feedings are doing well.  We just need to pray that this is an obstacle they won't have to overcome.

Specific Prayer

• Penelope's pending surgery and wisdom for the doctors making that decision
• Lydia's discontent
• Penny's toleration of the ventilator
• Lydia's toleration of feed (she needs to have a stool...go ahead and pray for her poop...God knows about poop, He invented it!)
• Protection from NEC for both girls
  
• Praise for the Turner's result and every other miracle we've had so far!
  

01.10 Update

Penelope - 830g      Lydia-  1160g

Good news all around for rounds this morning.  Penelope's blood sugars are staying even more stable than they were on the insulin, she's going off her IV nutrition (TPN) and going to fortified breastmilk with some additional IV fluids, and she's slowly needing her CPAP less and less!

Lydia seems much more calm, although she still throws a fit occasionally.  I really think she's just hungry because she was on 9cc/3hr before her surgery and she hasn't had any food in her tummy for days now!  They're starting her back on feeds as soon as the orders get written so she should be a happier camper soon.

About their weights, it's a funny thing.  It takes quite a bit of doing to get Penelope's CPAP off and all her dressings to get an accurate weight, so they don't do it every night.  And with Lydia she was so volatile with her fits that if she was calm we didn't dare wake her up!  So it doesn't get done everyday. Also, with the fluctuation of fluids and stopping feeds and starting feeds...etc...it's not at a steady climb of weight yet, but Dr Goodwin Sampson told us not to worry about that. They're doing well.

For today, we're all doing well!  Praise the Lord!!!  Here are a few treats for you :)  All I did was step out to take a shower and missed this moment!  At least Jonathan is quick with the camera.

Lydia having a fit with Jonathan trying to calm her down

Penny in a rare CPAP adjustment moment when we get a glimpse of her face (no, she doesn't have rabies)

As The Dust Settles

(01.07.08)

Wow.  What a whirldwind this morning was.  I can't believe everything that has happened today!  We woke up around 7:00am this morning to the charge nurse coming in saying, slightly frantically, "Mom, we're moving you now, next door to the sisters room and they are also prepping sister for surgery."  We rubbed our eyes and said... "what? Ok." and started our day of trying to wrap our head around all that would come.  

Lydia was moved yesterday (01.06) afternoon to Le Bonheur to be with her sister and at the time, assess the state of her PDA since she had already gone through two courses of indocin, surgery was the next step.  Last night we spoke to the cardiovascular surgeon, Dr. Goldburg, who said that she was definitely eligible for the surgery and explained to us a bit more why he believed it would probably be best to do it tomorrow (today.)  He explained that her echo's were showing a bit of strain on the left side of the heart from all the work that it was having to do.  He also assured us how quick the surgery would be, how the procedure would go and that it was something that was done often.  The surgery to fix her PDA would be using either a small surgical tie around the PDA to close it or using a small metal clamp to pinch it off.  As with all surgeries, there are risks he had to warn us of and these are things that are hard to hear but a reality nonetheless.  The last thing he told us was that he was taking her name down to put on the board, that she should feel a lot better after the surgery and that if we needed anything just to page him, even at 2am!  We joked about paging him at 2am to ask about something dumb but we didn't do that for sake of him not falling asleep during Lydia's surgery.  We went to bed with the thoughts of surgery plumb fairies dancing in our head... ok. not really. Just AB alarms going off at Penny's bed.

That brings us back to paragraph one.  After we started pulling ourselves out of sleepyland, trying to grasp a bit of togetheredness, we threw our things in our bags and started walking it all down the long three rooms away.  While we were moving things to the room, we began seeing all the prep work done next door to Penny's new room.  Lydia's room was being prepped for surgery, carts, drapes, surgical tools were all about and being sorted.  Doctors and nurses in their surgical attire, darting around for the work that was about to be done.  We knew they had planned on having it soon but we didn't realize it was going to be THAT soon!  We spoke with the anesthesiologist, again giving us the run through on the surgery process and what the expected positive outcomes would be along with the unexpected negatives.  We've learned that in medical world that the saying about medicine being a "practice" seems to be true.  They practice what they know and have studied with hopes that the outcomes are the same, but sometimes there are variables.  The surgery was to last about an hour long and after putting away things and taking a moment to reflect on what was about to happen, we decided to leave from next door to not worry ourselves to death over the procedure.  We corralled ourselves to the cafeteria and had a bit of breakfast, chatted a bit about learning to deal with these stress inducing moments, especially if both of them have something because we tend to worry more for the first one than we do the second one, then took ourselves back upstairs to Penny's room.  By the time we sat down to reply to some comments about the surgery, Dr. Goldburg was back in the room saying he was done.  WOW!  That was fast!!  We were told that everything went smoothly and that they chose to clamp the PDA with the clip.  Along with the clamp, a small incision on her left side under her arm and towards her back, will be her battle scar.  They said it won't grow with her and will stay small her whole life.  It's incredible these surgeries.  The whole surgical team was amazing as well as kind and we probably will be seeing them again soon since Penelope requires the same thing.  All of that took place between 7am - 11:30am.  We let the nurses clean things up a bit and then went in to sit with Lydia.  It was strange to see her so still and not moving but we sat with her, holding her little hands.  

As the day continued, we Penny decided that she wanted some attention of her own and started having some A's and B's (apnea's and bradycardia's) dropping her vitals down to the 60's on HR and SpO2.  It's still so unnerving walking up to the bed with all the alarms sounding and seeing her just laying there not really breathing and the color changing so light.  We've both started learning the little tricks to help bring her out of the spells and help her remember that she needs to breath.  Her numbers are starting to settle with the new insulin and the doctors are balancing out the right amount of sugars to give to her so that she doesn't drop too low now.  That's the current issue is that at around two hours, her glucose levels drop, varying from 50s to only going down to 100's.  She hasn't had any massive highs yet but we spoke with an endocrinologist yesterday that said that things might start changing once the dosage of food she is getting starts to increase as well as the transition in to eating more like a baby.  Her numbers might begin to spike at the times that she gets the big push of food as if she were eating from mom.  So right now they will continue to play the number game and keep her stable on the glucose numbers.  As for her PDA, the doctors aren't seeing the physical signs that she needs to be showing that warrants the surgery, though with all the A's and B's she has been doing, they will be evaluating it.  

(01.08.11)

Today was a good day of sitting with the girls and enjoying being together.  As you'll see in a pic, we're nice and close, not quite as close as before but significantly closer than driving across Memphis.  Lydia is recovering in the twin room while in an adjoining room, Penny is being kept and monitored.  There is a sliding door that can be modified to swing wide and open the two rooms up in to each other and so I've made it as wide open as possible.  It's about as large as a nice downtown flat, all we're missing is the stove!  There had been talk about me being a violinist and so a couple of doctors and nurses had been saying that I should bring it up to play for the girls.  Well, I didn't realize it had been set already but a number of people said that they can't wait to hear me play on Sat.  I realized that somewhere along the way someone had set up a time for me to play and I didn't realize it!  And so, this evening a few hours before shift change, while things were nice and calm, I played a little show for the girls, sitting in swivel  chair between the two rooms, enjoying the time that I was getting to have with them.  I'm thankful that I was set up for a time to play because it was medicinal for my soul and heart to share some music with my children out in the open air for the first time.  To see their stats hold steady and calm while I played and to see them react the same way as they did in utero was quite amazing.  I will definitely be bringing more music to play for them as time goes along... I've got to brush up on some pieces!

This evening has brought some interesting changes for Lydia.  Bethany and I had gone out to dinner and around 8:30pm, we came back to find that Lydia was extubated and all the breathing equipment changed again to her low flow nasal canula.  She looked great and was responding great which was so encouraging for us!  It was nice to see her face again without all the tubes down her throat.  We watched her for a while, intrigued by every little twitch that she made because of the anesthetic continuing to leave her body.  We put her little bean bag nesting pillow on her and she slept nicely and less fidgety.  About two hours pass when Bethany and I noticed that Lydia had begun to flail some.  It's normal for preemies to do this because we were told that they do this because they're nervous system isn't fully developed and they're supposed to be still encased in fluid, they have a sense of falling and so they flail around.  We went up to her to try and comfort her some by putting her hands on her face and head and tucking her feet up.  That did nothing.  She just keep moving her mouth open and making wheezing sounds.  We figured out that she was trying to scream but nothing was really coming out but that wheeze.  For the next hour or so she had these fits.  The doctor came in and check on her about half way through and said that it was probably irritation from extubation.  She was showing signs of pain along with the flailing so he ordered a breathing treatment and some pain medication to try and help her rest.  He also had an x-ray done just in case that there wasn't something else wrong that was inside.  The x-ray confirmed everything was normal so we continued to watch her attempt to scream and flail for a bit and then as the meds began to kick in, she started to calm.  It was difficult not being able to do anything to calm her down, we tried and tried but one of the nurses said that even though it might be trying to calm her down, it might be also irritating her.  That was hard being told that what we were doing was probably bothering her more.  We just wanted to try and comfort her.  

Things are finally quiet with the occasional alarms from the monitors.  Bethany's asleep in the other room with Lydia while I'm in the room with Penny.  Listening to the bubble CPAPP, knowing my daughter is breathing is comforting.  It will be weird being at home with these two with now bells ringing to let us know that their breathing has slowed some.  For now, I'll enjoy every single noise that is made.

Lights out from Le Bonheur NICU.

A couple of photos from the past two days

A rare glimpse at Ms Penelope's face

Everyone getting prepped for surgery

In the middle of the process

Post surgery

Super Deluxe Condo rooms

Playing for the girls (photos by Sarah our nurse)

Enjoying some music.

01.06.11 Evening Update

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


Success! Kind of.  We've got both girls at Lebonheur! But they're in different rooms.  The reasoning is that Lydia will be having her ductul ligation surgery tomorrow and because it will be done in her room they want to reduce the risk of infection by keeping Penny in her original room until after the surgery.  So, Jonathan and I are enjoying being able to walk down the hall to see our other girl rather than drive across town to do so!  We'll just have to figure out which room we'll sleep in for the night.  They call this twin room the "penthouse" for good reason! it's HUGE! Still has the same number of chairs and things, but we could practice our cartwheels in here if we wanted to (although it's not advisable for me for a few more weeks).

Both girls are doing well.  Penelope's blood sugars are acting more stable.  They did take a little dip last night about 2 hours after getting her shot, so they're watching closely to make sure it doesn't take any larger dips.  We asked whether that meant that she didn't need the insulin and Dr. Goodwin-Sampson said that if her levels continue to stay stable they will start to cut back slowly on the insulin and see how she responds and maybe, just maybe, she won't be on it by the time we leave.  Maybe.  Today she had her arm IVs removed so the armboards were taken off too so her little hands are free!!!  It's so wonderful to feel her little hands squeeze our fingers again.  She seems much happier.  Although a nurse that was doing something with her this morning said that Penny slapped her hand away....so we may have to employ the armboards again to protect the nurses!

Lydia has been having fewer but more severe desats which is completely normal with her HUGE ductus.  Hopefully her surgery tomorrow will correct that.  Other than that she's doing wonderfully as far as I know.  She tolerated the transport well and is hanging out in her fancy new bed that matches Penny's.  It's a really nice bed and you can look straight through the top of it so no matter which way they're turned we can see them.  There's something very therapeutic about being able to see your baby.

They just told me I get to kangaroo with Penny so I'm gonna go!!! 

Specific Prayers :

• Praise for the Lord's continued miracles 
• Safety for Lydia's surgery tomorrow
• Stability for Penny's blood sugars
• Wisdom for the doctors
• Rest, Peace and Faith for us

Thank you so very much.

Love,
 The Chus

01.04 - Massive Photo Bomb! Boom!

We had a pretty good day today with both girls.  Bethany and I went home to get some rest, last night and took our time getting out this morning.  We're so happy to be here at Le Bonheur tonight with Penny.  For more info for today go to Bethany's Blog

Click on any of the pics to view it in full size.

Our living accommodations at Le Bonheur. It's like sleeping on a bunk in the bus but a little more open! 

 Penny's Giraffe Bed (this is why it's called a giraffe bed! The lid pops straight up)

Penny right before her getting her CPAP. our first time to see her without a assisted breathing device.

Penny getting her CPAP

 It was tough going back to The Pavilion not seeing Penny there.

 Lydia's hand

Penny's empty bed.

 the first night Bethany got to Kangaroo care with Lydia.  Lydia in transport from bed to Bethany

Tears of joy for finally getting to hold one our girls for the first time.

 Psalms 22:9-10

my first time to get to hold Lydia

Kangaroo day 2

Happy New Year with Penelope!

Lydia giving us some big eye time for the new year.

our poor Penny is all wrapped up in so many things, it's hard to believe there's a tiny person under all of that equipment.  We love our little Penny.