summer days keep on a rollin' by.

Ok, so it's been a while since I posted last.  A lot has happened since then and I can't even begin to try and catch you all up from last time and if you've been reading this you know that the real juicy updates are over at Bethany's blog, things like vent settings, CO2 levels and g-tube feedings, the good stuff.

This is hopefully going to be one of those semi-informative updates and not one of those sappy, emotional rambles I tend to take. Those often lend themselves to me staying up till 3am and not getting anything done the next day.... so, here we go.

Penny has been stalled out on her weight gain, for the third day in a row, and the doctors are going to up her formula amount to a paltry 75cc's. It's really for her own good, even though we want her to be more than 12lbs by the time she goes to prom, if we let her go to prom.  This plateauing is also the instigator for no more vent weaning. The less work she has to do breathing, the more she is going to gain and that's ultimately what we want, fatted calves... ha ha, get it... fatted cal.. nevermind.

Bottle feedings have continued and in an increasingly surprising way!  She continues to work with Speech Therapy and as of this morning took an incredible 35cc's by bottle! That's huge for a child that was intubated and sedated as long as she has and with as little time back on PO feed's. We're trying everything we can to stay away from oral aversions and since there's no need for intubation again, we hope that all things food and mouth related will be positive experiences from here on out. Her current infatuation with her hands make it difficult to get a bottle up to her mouth but once you sneak around them, she remembers that the bottle is her friend.

Like speech, she's also getting PT & OT and through learning about how to tummy time with a trach and g-tube, as well as teaching how to try and roll over with those, we realize our Penny's still our little fighter. She has great head control, tries to roll over to certain sounds, can turn her attention towards our voices and is learning to sit up un propped.  All of the physical aspects will take time to grow up and out of.  She's definitely behind here and so another already acknowledge benefit from getting the trach is the mobility that she now has. It's such a joy to be able to walk right in and pick her up out of the bed.

Now to our chunky monkey, Lydia, she continues to be a happy little baby. Sleeping through the nights, with little cries here and there from dreams of her toys not doing as she wants.  She's been eating well, napping in the afternoons well and continuing to gain strength.  Her little personality is starting to shine through and her little coy grins are infectious.  We love that the girls can spend time together and on the days that they are actually nice to each other, it's heart melting, which thankfully is more than none. I think Penny still has some animosity towards her for stealing all that placenta.  Lydia also recently had a PT and Speech eval and she is progressing nicely on her adjusted and actual age level.  It's hard for a lot of the doctors and nurses to believe that she was actually a preemie, seeing how big she is.

We continue to walk this unknown path with the gracious help of our parents, family and friends, constantly being amazed at the way God has been moving in things around us.  He's already opening doors to allow us to help others amidst this continued battle and that is humbling.  Bethany worked a rough budget for us the other day and we came up with $1 extra.  That's living off of one salary.  That's God's providence. I think He's teaching us, with our new family, how we can find unique ways to give back.  Bethany had to start work this week so the new challenges of keeping up with the sitters, the hospital and me while i'm on the road as well as helping her kids day in and day out are going to be interesting.  She, already, has the physical hand fatigue of signing all day long so when she's holding the girls, it gets tough.

That's about all I can think of to write about at the moment.  Thank you all who are continuing to follow us on this journey, praying for these girls and us. We're humbled and continually grateful.

Prayer specifics:

• Penelope's weight gain
• Continued development with bottle feeding.
• After weight gain, continued hope to wean from the vent.
• Muscle development and strengthening.
• Mental development and strengthening.
• Lydia to continue being healthy and growing.
• For her to continue developing mentally and physically.
• For Bethany to have stamina to make it through the work day and then come home to be mom.
• For her spiritual and emotional well being while I'm traveling.
• My spiritual and emotional well being while away, though less this month, it's still tough leaving.

150 days and counting...

Counting down to the day that little Ms. Penelope can come home.  That day is 5 days away. FIVE!  It's truly hard to believe that the time is around the corner that we will be stepping out of the NICU with our little Penny, prayerfully walking away and not coming back.  Not coming back, as a patient but rather a graduate of this academy that a select graduate from.  I've been on a strange work/writing hiatus since my last post. Seven long weeks on the road, 38 shows, and only three days at home to see your fragmented family equal an emotionally, spiritually, creatively drained individual.  Our silver lining was often the little cameras on front of our electronic windows, carrying me hundreds of miles in to a hospital room or nursery, visually and mentally holding my children and my wife.  Carrying on a conversation with doctors about cals kkals/kgs/day, possible surgery dates and how to help an anemic little baby all while sitting in a coffee shop or back lounge of a bus.  Technology may be the downfall of a lot of folks but for this family, it's what is helping us stay together, keeping us, in a strange sort of way, finger tips apart.

On my notebook, my screen saver spools the images of the past 152 days (the two days prior to their birth in the hospital) and my mind flutters to the moment I, or someone else, snapped those images, the flooding of emotions that come washing in to my brain, seeping it's way out through the windows to my soul.  How far we have come! but yet, how absolutely little we have scratched on the surface to the lives of these little ones.  We have journeyed the path of a thousand lives over the past 150 days, leaning on the shoulders of all those that choose to carry us to the next oasis.  The NICU life is a much like a trek across the desert with the knowledge that there is a great mystery to be discovered.  Many that walk it, come out discovering their mystery leads them to a great ocean, one called the Ocean of Loss, having to send their precious treasure they have been carrying across the great crystal sea.  Others walk and walk, taking them to an ancient chamber that many have journeyed to, that once inside leads them to yet another mysterious quest called "parenting."  We have met many along the way that have taken their little treasures out of the desert in to the next mystery, saying good bye and praying them the best as they enter in to that tough next quest.  We have also met those select few who have seen the Great Ocean and have tasted it's saltiness, wondering why their path brought them there.  They walk away with the bitter taste of that Ocean and pray never to experience it again.  This journey is filled with many that help you navigate through the tough sands, guides that point you to your next steps, craftsmen who specialize in caring for your treasure and most importantly your fellow journeymen who lift you up as you try the best you can to keep that priceless gem out of the blasting winds of the desert, away from the sands that could mark up and buff out the twinkling.

It's hard to believe that we are actually about to walk from this desert in to the next chapter of the mystery.  I do know, it's going to be a fun one!

Every storm brings a rainbow, a symbol that was given to Noah that God chose to use something destructive to bring about a greater good.  A symbol that would be given to us as a sign of hope, that God has given us another day to give Him praise through our lives.  We give Christ praise through our storm.

(Samsung Epic Panorama option. 05.23.11)  

Not my best work, but I needed to remember that moment.

Photo Bomb 3.13

I figure since my range of motion is limited to putting my hands straight out in front of me, and I can't hold my baby, at least I have some time now to post some pictures of my sweet girls to make myself and you all smile.  Silver lining people...it's all about the silver lining!

Mrs Amber visiting her little buddy

 

Penelope playing peep-eye

Penelope's snuggle time with MahMah

Penny the Poser

Uncle Matt getting his baby fix with Lydia

Aunt Sam slaving away while Uncle Matt held Lydia...typical

Aunt Shelli feeding Lydia

Penelope's foot got grounded for kicking at her daddy

Penny was having a talk with her bear in sheep's clothing while her bodyguard Panda Pal watches over her and her Lydi-Lamb whispers in her ear....think she's got enough stuffed animals?

reminding Eliza that she'll always be our favorite "dog"-ter

Mommy and Lydi

Daddy and Lydi

I mean really....how cute is this

there's just too much cuteness

Sweet Penny being coy....pretty girl...still working on her bilirubin

Penny wrapping herself around daddy's finger...it's mutual

And last but not least...Lydia's ballerina outfit. And I said I didn't want lots of pink clothes...who was I kidding?!?!

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. 

01.02.11 Evening Update

Bethany and I had been missing our church family so we decided to go and be a part of church this morning. It was wonderful to be together with our family, worshiping together! It was tough to be there and not with our girls so we did take off pretty quick after church was over to get to lunch with our blood family and then to Lydia first at The Pavilion.


Update

After Penny's crazy episode of high blood glucose levels on New Year's Eve, she spent the day yesterday recouping and getting rebalanced. Her numbers continued to stay around the mid 200's and finally hit the low 200's and dipped under that by the evening. We saw Dr. Ferry, the endocrinologist, on New Year's Day and after his examination he said that she had a rare case of congenital diabetes, which might be transient, that they would have to watch and play the balancing game of insulin/glucose to help her out. What caused the massive spike is still unknown, guesses thrown towards her body being under stress, under developed and not being able to keep up insulin-wise with the sugar coming in to her body. We also saw Dr. Chin, another cardiologist, that said that the general consensus for her coarct is that they aren't seeing the necessary signs to say that it really is a coarct. (amazing!) but they will continue to watch and see how her PDA closes before they make final prognosis on that.

This afternoon the doctor called and said that they would be starting Penny on her subcutaneous (subcu) insulin shot (detemir) to get her off of the IV insulin. A few hours ago, I called to check on Penny's stats and they said that her glucose levels were low, so low that the meter was now saying "too low" and so the lab work began again to see what her numbers were. She got to a low of 21 so they cut off all of her fluids and started to give her glucose again. (go figure!) The numbers game has been and is currently being played out as she gets different levels of glucose or dextrose IV's to balance out her subcu insulin shot. She's back up to about 241 on glucose levels. Tomorrow the gamut of doctors come in again to talk about her situation and see what they can do to get her numbers stabilized. This yo yo game is wearing on all of us and we're definitely ready for her to get stable.

As for Lydia, the past few days, she's been a stinkin little clock. Ticking away, movin those little arms around and around, steady as can be. Her food intake continues to increase (which makes for some good meconium diapers) and her weight gain continues to tip the scales, as much as a preemie can rock a scale. Our continued concerns are for her PDA to close and for there to be no complications within her gut, (NEC) esp. if she were to take on another course of indocin.

And so this is where we stand tonight. Thank you all for your prayers, comments and for your continued journeying with us down this path!

Goodnight from Le Bonheur NICU - The Chus

Urgent Update

Today was a rough day for Penny. Somehow sometime this afternoon, Penny's blood glucose levels shot up to an astronomical 1948 glucose count. A normal number should be around the low 100's and an unusual high is around 200. It has baffled doctors and nurses alike, all saying they've never seen a glucose number that high anywhere let alone a preemie. They're concerned with possible neurological side affects that this might have caused which only long term time will tell. The on call doctor said that when they started noticing the climbing level they thought they might be messing up a lab because it was rising so fast so they began taking tests more frequently along with beginning to dose her with insulin. The endocrinologist said that because they started to give her the insulin quickly that he believe there should be little to no harm done but again, only time will tell. Her numbers are dropping as we speak but can only be brought down at a rate of 100 pts per hour. she's currently at 630 so we have a long night ahead to get her back to 100.

Our prayer tonight, that amazing work be done in Penny's brain, that God has protected her from harm from this crazy spike and that the source of the situation would be found and resolved.

What a crazy way to start the new year but alas we are here.

Happy New Year from Le Bonheur NICU.

12.28 Evening Update

Penny's cardiologist, Dr. Joshi, came and assessed her current situation. He believes, while looking at the echo, her overall internal heart structure looks good. The concern lies within the PDA and the way that it is currently pumping the blood. Her PDA, being so open now because of her medicine, is causing some diastolic run off and making the diagnosis on the coarctation difficult so in order to see it more clearly, they have stopped the prostaglandins. This hopefully will also cease the apnea the episodes that she has been dealing with since last night. She has had a few episodes since the medicine stopped but the nurse believes that it was the last little bit that was flushed in to her system. Dr. Joshi believes that it will take anywhere from 24-48 hours for the PDA to get small enough to see what's really going on.

Our prayer request for tonight is that Penny will begin to flush out the prostaglandins and that the PDA will begin to close and that her aorta will be responding in a way that they can make a proper diagnosis.

We are grasping on to as much as we can scribble and keep in our heads so hold on with us! We're riding this ride the best we can!

The Chu's

Le Bonheur

I'll never forget the view of the Memphis skyline right now.

We've officially settled in to Le Bonheur, one of Memphis' finest hospitals for children and we can't be more amazed by our surroundings. The building we are in is about as new as our little Penny and we are so thankful to be under the care of these medical personel. Currently, Penelope is resting in her cozy super high tech Giraffe bed. She looks so tiny in her big ole bed, sort of spaceshipish.

They're going to be watching her over the next days and weeks. Dr. Krishnan came by after we had been in for a bit and said she is looking really good and that their long term hopes might be that the PDA might just grow up with her but that really only takes time. So as it stands we will have one daughter here and the other at The Pavilion. Although we don't see the repercussions right now between them, we feel the stress of having them separated. We feel so strongly to having them together in the same room but because Le Bonheur is a specialized hospital for children Lydia probably won't be kept here with her sister. We're going to keep pushing to see about having both of them in the same room though but for now... we'll make the drive together to see both girls until Bethany can drive again.

I should rest so we can meet the cardiovascular doctors in the morning.

Le Bonheur NICU out.