Intermezzo

An Intermezzo is, according to Webster’s Dictionary, “a short musical composition between main divisions of an extended musical work.”  

Seven years ago, I embarked on a journey for which I felt ill equipped.  I had a general idea of what I was capable of, but was unsure how I would fit in to this new role.  That role was being a violinist for Skillet.  

I was familiar with Skillet since the early days when I would go see them perform in a church basement in Memphis.  I had followed their musical career and even voted for them in the Dove awards when Comatose was nominated.  I had little idea that I was soon going to be a part of their team.  Since that first show in Elk Heart, Indiana back in 2008, life has almost felt like fiction.  Being able to perform before thousands across America, Europe, Russia and South America has been a rush like no other.  The stories, that people have shared about how the music has influenced them, helped them, and carried them through their hard times, have been what has made walking out on stage every night worth it.  

A lot of you know that earlier this year my dad passed away from pancreatic cancer.  As a family, we had planned on enjoying a few more months with him in hopes of taking him to places he had never been.  We had planned to make memories that would help soothe our impending grief, when that inevitable time came.  We had no idea that his time would be so short and I was left with a massive hole in my heart because of all the things that I felt I had missed out on.  I was thankful that he did not have to suffer any more than he did.  How this affected me, though, is that it made me realize that I was missing out on making key memories with my own wife and children.  My heart grew heavier and heavier for time with them and that has lead to this decision.  

As of today, I’ll be parting ways with Skillet and taking a hiatus from the touring world.  After twelve years of touring professionally as a violinist, I’ve done and seen more things than I could have ever dreamed.  I've grown not just as a violinist and musician but as a person; trying my hardest to never miss out on any adventure that presented itself.  Any opportunity to do, eat, or see something new, I embraced with open arms and I'm so glad that I did.

I love my Skillet family greatly and will miss them dearly.  John & Korey's passion and spirit, their desire to go against the grain to spread the message of Jesus' hope, will forever inspire my walk with Christ.  To be as bold and unashamed as they are with their love for each other and their love for Jesus is something we all should aspire to.  They have constantly supported my family through every life event with generosity and compassion.  I have been and will forever be a fan of the the great work and art that they create.  To be a part of their legacy is one of my greatest honors and I  am so humbled that they chose to take a chance on me.  

With every tour I've had the opportunity to work with some of the hardest working people in the industry.  In my time with Skillet, I've seen some seemingly impossible situations arise that our crew ran headlong into, and overcame, so that the show could go on.  Their knowledge and tireless hard work combined, enable us to take the stage and give you the best experience.  Without them our jobs would be impossible and their hard work deserves our respect.  

It's impossible to be on tour and not connect with at least one person.  I count it a great joy that I've been able to make so many life long friends and brothers in arms to walk with while on this journey.  They are the ones that help ward off the demons of doubt and fight off the arrows of despair when days feel longer than weeks and weeks feel longer than years.  Even though we will not be side be side physically, I know that I can always count on them to lift me up in prayer wherever they are in the world and they can expect the same from me.   

To all of the incredible and passionate fans, thank you from the bottom of my heart for your dedication, encouragement  and unwavering support.  You, the fans, are the driving force behind any artist.  I hope that the music will continue to move you towards the hope that is found in our Savior, Jesus Christ.  He is worthy of all our efforts and praise.  He is the true Hero in this story.

I will always and forever be a violinist and musician, a worshipper and messenger for our Savior, Jesus Christ.  So, for now, this musical piece must enter in to it’s intermezzo, it’s change.   

Habakkuk 3:17-19

This Guy

says hello and thank you for all your continued prayers and support.

Sitting by his side right now, talking about what he's feeling and experiencing. He's cognitively aware of where he is, what he's going through and what has happened thus far. He was extubated in the wee hours of this morning and the nurse that I spoke with said he started out in full conversation with them. He's moving his limbs well and actually sat in a chair today with the help of the PT. This afternoon he had his chest tube removed and was fed a decent lunch by my mom and brother.

We're continually amazed at this progress and are grateful to you all for your prayers but also to the miracle of modern medicine. I do believe this is a way God answers our prayers because without these advancements and practices by gifted medical personal, lives would not be saved.

Prayer Requests
1. Continue to gain strength
2. For no residual infection in the heart.
3. No more clots or potential stroke

We're Not Out Of The Woods, But At Least We're Still In It.

Stole the quote from my wife.

Dad's out of surgery and in the ICU in recovery.  The surgeon was quite pleased with the way that the procedure went with few complications.  The valve itself was 98% functional so he did a repair rather than a replacement.  He said that the part that was infected wasn't as large as initially thought.  He cleared the part that was infected out and stitched the part of the valve that was torn.  He said part of the concern was that a section of the vegetated heart was missing and was floating/lodged around in the body somewhere.  It happened sometime between the previous TEE scan a week ago and the TEE scan they performed before the surgery today.  He doesn't believe that it went to his head because we would have seen some sign in his cognitive state.  He is concerned with the stitched area that it might become infected but with as many antibiotics that they are treating with the surgeon feels that it should be ok.  They are trying to figure out where his infection is stemming from because the part that he cleaned out didn't seem like it should have been causing the high temperature.

And now we will continue to walk through this journey in the woods and see what comes next.

Prayer Petitions

1. Discovery of the infection and treatment of it.
   
2. Continued weaning off of ventilator and extubated.
   
3. Continued watch of bleeding and possible signs of a stroke, post surgery.

Thank you all for standing in the gap and praying for my dad.  The calm that has been with us has been incredible.

From before...

1. No excessive bleeding. Dad has a strong reaction to heparin (blood thinner), which is necessary since his blood will leave his body and move through a machine and then back in to his body again. 
2. No throwing clots. Because the blood is leaving the body there is a much higher chance that it could clot and cause a stroke.
3. No broken off vegetative pieces of heart. This will act like a clot and cause a stroke as well.
4. No bleeding in the brain. The neurologist said that he feels that the previous stroke area won't be an issue for the surgery.

The Calm Before The Storm

The road has been slow and steady since my last post and that's a good thing with the current state of health for dad.  The less changes, the better because it means that his heart is staying steady.

Since my last post:

1. We were told that the surgeon had wanted to take my dad asap to the operating room to repair his heart.  My mom was uncomfortable with that because my brother had gone back to his home and it would take a day for him to get back to us.  So the surgery was postponed until Tues (04.30.13)
   
2. During his stay in the CVStepDown, dad had a small spell where his heart rate, blood pressure and temp all went down (brady episode and hypothermic) and was moved back upstairs to ICU.
   
3. He decided that just to mix things up, he'd convert himself back in to sinus rhythm again and has currently kept it for the past day.  This is a good thing but doesn't mean the surgery doesn't still have to happen, it's just a good sign that his heart is working properly right now and any little positives are good.  

This is a short and sweet post because tomorrow holds a lot in store.

Around 1pm tomorrow (04.30) my dad will have his heart surgery.  We would be honored if you would pray for all the people that will be involved in the procedure because it is a complicated one.

Prayer Petitions:

1. No excessive bleeding. Dad has a strong reaction to heparin (blood thinner), which is necessary since his blood will leave his body and move through a machine and then back in to his body again.
   
2. No throwing clots. Because the blood is leaving the body there is a much higher chance that it could clot and cause a stroke.
   
3. No broken off vegetative pieces of heart. This will act like a clot and cause a stroke as well.
   
4. No bleeding in the brain. The neurologist said that he feels that the previous stroke area won't be an issue for the surgery.

Thank you all again and we are so grateful for you all.

Hope Will Lead Us On

Another dear group of friends, the Barlows of BarlowGirl wrote,

"So lift up your eyes

Cause we're not forgotten

And hope will lead us on

Oh we pray for the dawn

and we reach for the mornin'

And hope will lead us on"

Today dad had his TEE scan early in the morning, much before we were expecting otherwise I would have posted something about praying for it but sometimes that's the way things go at the hospital.  Take it when you get a chance.  

Unfortunately, the results that we were hoping and praying that it would not be, is the answer. There is vegetation of dad's mitral valve which means it's his heart that is infected.  This is a more concrete answer but now most of the paths that we choose, now have some negative outcome.  As much as we want to be hopeful and we will be, having surgery on his heart leads very heavily in to having another stroke because of the blood thinners that he will have to go on.  If we don't do anything at all, the vegetation that has already started, could begin to fall off and cause another stroke.  The hematologist is wanting to see from the ID doctor whether there might be a way to treat the heart infection without having to do the surgery, in hopes of sparing him to go in to surgery.  Also, his valve is swinging so violently, the hematologist believes this is why his blood count continues to be dropping and his need for more blood is present.  The valve is bursting the healthy blood cells as it regurgitates around in the left side of the heart.  

He did get two more units of blood (for those of you who donate, thank you. thank you. I'll be making my trip to donate soon so please keep going.)  He also got some physical therapy today and through their assessment, will continue to come help him with some rehab.  He was struggling to see properly today, he was trying to explain how the clock on the wall was missing things and he couldn't tell what time it was.  He was also having some strange mumblings and visions before we left for the night. A long grey haired Scottish Terrier was sitting on the counter at one point but dad quickly said that was a dream.  We're not sure what those moments were about but hope they subside.

I didn't get to speak to any of the caridac docs today but hope to see one tomorrow or at least the ID doc to get an idea of how bad the vegetation/infection is in his heart.  

There's not much more to tell today, mostly because I don't have the information.

Prayer Requests

1. Proper treatment for his heart infection.
2. For vegetation of the heart to NOT break down and fall in to the blood stream
3. If surgery is decided upon, for there to be minimal collateral damage.
4. Wisdom for my mom in choosing the best health options for my dad.

Thank you again to so many of you who have commented or written.  We appreciate all your prayers and thoughts.

One Foot In Front of The Other

I love the song from my friends, Building429

"That's how I'm going to discoverOne foot, one foot at a timeOne foot, one foot at a time"
The past few days have seen some ups and downs, brought a lot of questions with little answers and lots of prayers and tears.  Since my last post on Tues. a number of things have happened.

1. Dad's MRSA infection is gone but his white count is still up and he's still losing blood somewhere. The ID (infectious disease) doc is still trying to figure out why. Yay for no more yellow coats and purple gloves! We don't know the state of his heart and whether or not it might be infected still.
   
2. After days of confusion and very cloudy conversations, dad's finally having full thoughts and conversations, remembering most of the recent experiences and people that have stopped by.  The timeline is a little fluid, hours feel like days, days feel like weeks. Speech Therapy will be working to see how his higher cognitive abilities are working
   
3. For a hot second, dad's heart converted from afib back to a normal sinus rhythm. Ok, a little longer than a hot second, more like five or six hours but sometime overnight went back to afib.  We were told by one of the cardiologist that if we can catch it again in sinus rhythm, they can chemically keep it steady, the trick is catching it when it does.
   
4. Dad has been moved from ICU to CVStepDown (my mom's floor) again because his CT scan came back showing no more bleeding or other worry spots.  There are some residual effects that the ID doc said might have caused an unexpected fever spike last night (06.18.13) as well as the tiredness and confusion due to the stroke pattern appearing wedged shape (i wish i could see this?!) There are also some signs that, probably due to age, small sections of his brain probably aren't working.

Now, to give information about today.

1. A test that the cardiologist tried to perform on Thursday but couldn't because my dad's neck was bothering him too much, will hopefully be performed on Tues (04.23.13) afternoon.  This test, a TEE (trans-esophageal echocardiogram) will give the doctors are very clear view of the status of my dad's heart.  What they are most interested in seeing is: first, is there any vegetation of the heart (how much, how bad) and, second, what is the status of the ruptured mitral valve and does it need immediate surgery or could it be postponed?
   
2. The next part of treatment after the TEE is tricky and multifaceted.  If the heart is infected, the means in which to treat it is necessary before they can even consider doing any operations on my dad so finding the right antibiotic and dosage will be key.  After that is done and the heart needs to be repaired soon, a surgeon, as well as us, will have to take the risk of putting him under knife and blood thinner (which is necessary for open heart surgery because the blood is ran through the heart-lung machine) to repair the valve. This is risky because the blood thinner might cause another clot to break off and cause yet another stroke, one much worse than he had.  He hasn't been on blood thinner since the last major episode. If the heart isn't infected but the leak is bad, again, same as last - surgery. If the heart is infected but the valve doesn't look very bad, they will have to do surgery to fix the part that is infected - thinner is still involved.
   
   All this to write, the
   ultimate best case scenario: no infection, no vegetation, mitral valve has minimal damage.
   There outcomes to the others are either, stroke, heart attack or the end. the word i'm refusing to speak of because I'm choosing to be an optimist rather than my usual pessimistic self.

And so... this is where we are at the end of the day, er... morning.


Current Prayer Requests.

1. stay stable for the TEE (on Tuesday)
2. no more afib! catch the sinus rhythm and medically help it stay
3. no infection of the heart
4. mitral valve tear is minimal
5. discover where he's losing blood
6. start some PT as to get active
7. start being more alert and awake
8. Justin - he has to travel and get back to work on Sunday in Hawaii.

Thank you all for your continued prayer and support. It is incredible how the community has gathered around to pray for us and we hope that we can be a support to you all in your journey.  We feel the comfort of His grace around us.

The Battle Is Thick Today.

Yesterday was a stable day with more tests for my dad. Today those results came in and they are not what we wanted to hear.  My dad's heart has a number of issues at hand that are all odds stacked against him.

The echo that was performed yesterday showed... a whole large explanation with lots of big words that I don't understand. The main words that we currently are concerned with are "prolapse of posterior leaflet" and "flail mitral leaflet w/ ruptured chordae" which in short means that the mitral valve is not functioning properly and needs to be repaired. This valve rupture is probably what caused the stroke.  Having had the stroke, being a heart attack survivor and having had work already done on his heart, greatly affects whether they would consider doing the surgery to repair it.

There is some concern that the infection of the blood might be due to endocarditis, an infection of the heart. They aren't sure on this yet but if so, this is not a good thing. They are also noticed possible "vegetation" in his heart which is also not a good thing.  It means that those parts of his heart are no longer working.  His heart is also in AFIB still and that doesn't help with anything.

I don't understand a lot of what's going on right now, but I wanted to write the things that have transpired today.

Prayer Requests

1. Pain Management for his back so that he can stay comfortable.
2. Choosing the best path of care.
3. Comfort for our family. Thankful to have my brother here from out of town to be with us during this time.

It's hard to request a miraculous repair of his heart but that is my selfish request. 

I also trust that our God is Sovereign and in control. May He be the comfort to my hurting soul.

"O God, you are my God;  earnestly I seek you; my soul thirsts for you; my flesh faints for you, as in  a dry and weary land where there is no water. So I have looked upon you in the sanctuary, beholding  your power and glory. Because your  steadfast love is better than life, my lips will praise you. So I will bless you  as long as I live; in your  name I will  lift up my hands." - Psalms 63:1-4

Stroke... And I'm Not Talking About The Masters

My dad had a stroke Sunday (04.14.13) morning after being admitted the previous Thursday for what we assumed was a pinched nerve or problem disk in his neck.  Before I get in to current details, let me recap what has happened thus far.

• Thur. (04.11.13) morning, my dad felt like he had slept funny and went to sit in his recliner he has set up as a massage chair/heating pad chair and while sitting there, lost feeling and strength in his limbs and ended up sliding to the ground. My mom couldn't get him back up so she called the ambulance and had him admitted, unsure of what was causing the issues.
  
• At the hospital, he was administered pain meds in the ER and then moved to a room.  MRI and CT scans were done and we waited for doctors to come and round.  Consult for Neurologist and NeuroSurgeon requested. Still no answers by that night.
  
• Fri. (04.12.13) Had seen his PCP and his CV doctor, still no neruo teams. Still in pain because of his back and weakness in his hands. no answers by that night
  
• Sat. (04.13.13) AM, Dad starts to not feel well, de-sating (low o2 saturation) and signs of AFIB (arrhythmic beating of the heart) and he is moved to the CVStepDown unit (the same floor on which my mom is a nurse) and watched. By this point, we still have not seen any of the neurology team.  He's not lucid and doesn't know where he is, who people are.  Still in pain and we assume that the pain medication is causing the cloudiness.  He gets a bunch of scans (MRI, CT, ultrasound of his arteries in his legs, lung scan) He has a blood infection, low hematocrit level, kidney levels are not good, UTI and it seems that he might have had a mini stroke. He is started on an blood thinner that evening. Neurology is reconsulted and still no visit by that night.
  
• Sun. (04.14.13) Dad has a full swing stroke and moved from CVStepdown to the main ICU.  They feel that the blood thinner has caused this bigger stroke and another CT scan of his head is done to compare with his previous one.  It is confirmed that he has bleeding in the lowest part of the right side of his brain.  Blood thinner is stopped and by the afternoon he is having short conversations with us and singing along with some of his favorite southern gospel tunes between his naps.  A neurosurgeon arrives and explains this was a stroke and as a surgeon can't really give us more answers than that, no surgeries on his back or neck can be done until some more answers are found.  He does feel that the blood thinner caused the clot and bleeding and because it has been stopped the body has a chance to do what it needs to do heal. He has weakness and slight blindness on his left side (right side of brain controls left side and vice versa.) Finding the source of the clot is now the game and finding if it came from his heart somewhere is the first place they were going to start looking (because of former heart attack, bypass surgery and stint.)  He has another scan at the end of the night but results hadn't come in yet.  Unfortunately his pain medication has been but on hold until he becomes more clear headed and in this has a rough night.
  
• As of this morning (04.15.13) he is stable still, given a dose of tylenol for pain management but after consulting with another doctor says he can have something stronger.  He's currently resting and we're waiting on an echo of his heart to see if there are blockages that caused/could cause more damage. 

Thank you for your prayers and thoughts as we journey this path.  There are a number of compounding issues that are making this situation very tough, his back being the biggest issue.  At this moment, we aren't taking visitors outside of family and clergy.

Prayer Requests

1. Find area of clot and determine if it might do more damage.
2. Find reasonable and agreeable pain management option for my dad's back.
3. Blood infection and blood loss to be discovered.
4. Healing in his brain from the stroke.
5. Comfort and strength for my mom as she has to take care of home and work.
6. Doctors, Specialists, and Nurses in care community.

First time NICU Parents

I wrote this for a friend who's sister in law just had a micro preemie (25-28 weekers) and was asking us for advice on the process.  I thought I'd share this on to anyone who might google preemie help or NICU information.  A little back history, my wife delivered our twin girls at 28wks. Baby A registered as a 25 weeker (550g) and Baby B registered as a 28 weeker (640g).  Baby B had a 2.5 month NICU stay at Le Bonheur Children's Hospital and Baby A had a 9.5 month stay, leaving with a G-tube and a trach + vent support. Both babies have been home since Oct. 12, 2011 and we are currently still on vent and MIC-KEY but in active trach trial procedures.

Here's a blog on NICU parental advice:

Advice.

1) Don't be afraid to ask questions and have doctors explain what something means. If they aren't willing to explain things, find another nurse or doctor who will. You are your child's best advocate and you should try your best to understand what things are happening to your baby.

2) Don't google everything they say. Most of the things that might come up in some of the growth and development of the baby will be generic terms or broad diagnosis and when you start to google things that are that broad you get lots of general explanations and or really gruesome pictures that don't apply to your baby.

3) Do google things like medicines and specific diagnosis. You will gain a better understanding of why and how certain things work and affect your child.

4) Get to know your health care professionals and build a relationship with them. They WILL become life long friends. You WILL see them a lot. Be attentive to those that work well with you and those that don't and figure out why to both.

5) Be available as much as you can when it comes to being interactive with your child. Use compression care as often as possible whenever they are doing ANYTHING in the Giraffe Beds. Ask to help with changing linens, fixing minor things in the bed, and asking to Kangaroo Care as soon as possible. The more interactions you get with your child in this fragile state not only helps your child grow and get to know you but it also helps you keep sane, mentally, emotionally and connectively with your child.

6) Get to know some of the other parents around you. Strength in numbers. Everyone in the NICU has a sick baby, learn what other parents are doing to help their babies grow.

7) If the hospital allows, bring comforting things from home for the baby to know you. Sleep with lovies, blankets, swaddling, bedding. Keep them in ziplock bags until the day they allow you to use it in their Giraffe Beds. Your scent is an extreme comfort to them. Also, if it's family centered care rooms, bring speakers and soft comforting music to play every now and then. No AC/DC yet  Mozart for babies is a GREAT start.

 Do spend some YOU time outside of the hospital, especially if it's family centered care rooms. We lived in the hospital, almost a month before going to see a movie together. The nurses had to kick us out bec. we hardly left the room. It's important for your mental stability to do things for you as well because your baby needs you to be healthy. Your baby is surrounded by the best team that can be taking care of them and they will notify you if you need to be there.

9) Leave a disposable film camera / old digital camera in the room just in case something funny happens while you are out on said date. Our nurses would dress the girls up in cute outfits or pose with the babies when a big accomplishment was made like finishing a whole 2 cc's of milk for the first time. (it's a big deal... i promise.) Those little moments are fun to have.

10) Blog/Journal/Keep a Diary of this journey. (you can read ours at http://iamknittogether.blogspot.com/ - start around 12.13.10 for the hospital journey or 10.28.10 for the whole journey) because it is therapy. We have over a year's worth of writing that we are now turning in to a book to give to our daughters when they get old enough to understand it to show them the amazing miracles that they are. It's also an easy way to keep your family and friends informed about what's going on bec. a lot of them won't be able to see them at this phase of life. Also keep a notepad and pen in the room for when therapists, doctors and specialists stop by and work with your baby while you are out. Have them leave a note, their pager numbers or contact info so you can contact them about anything they might have done.

Today, we lost a great inventor. The true heart behind that iconic 2D symbol that has come to mean so many things to so many people. A visionary, an imaginative, a creator, Steve Jobs had the means at his finger tips to create the things he dreamed up. We all have benefited in some way from his dreaming. Conversations with friends far away, danced to a song while no one was looking, wrote a novel that others would read or showed someone their home movie of one of their most life changing trips. The music, film and computing industry are all affected by him as well as the ripples that they created. May the next generation of thinkers and creators be inspired by his life and creations.

Steve Jobs - 1955 - 2011

The next generation of thinkers. 

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.

Sister Sister

What a precious precious moment we were blessed with.  One of our first family hang out times complete with simultaneous crying, dirty diapers, and lots of hugs and kisses.  There are just no words to describe how this felt.  After months of being separated from our two girls, finally having us all together was just bliss.

03.19 Update

(by Bethany from http://iamknittogether.blogspot.com)
Well the best laid plans of mice and ophthalmologists...

Penny didn't have her procedure yesterday as we had thought, but it may be for the best after all.  When the retina team didn't come yesterday we had the nurse contact the ophthalmologist who was very helpful in making sure everything was taken care of.  The retinal surgery fellow came to see Penny this morning and called to explain the procedure in great detail and also to confirm that there would be no danger in waiting until Monday.  So that's the plan.  At 830 Monday morning I'll be there to sign the consent form and be there when they're finished to comfort my sweet Penny.  The nurse showed me the needle they would be using for the shot and it was the size of one strand of hair. Tiniest thing ever.

Jonathan has gone now for this tour.  It was a tough trip to the airport but the Lord has been faithful to give us his strength thus far and He'll continue to do so I'm sure.  Thanks so much for your prayers and encouragement.  Please don't stop!

Specific Prayer

• Penny's eyes to do well until Monday and for the procedure to be successful
  
• Lydia to continue to do well
• Jonathan and me as we adjust
  

3.18 Update

By Bethany Chu from iamknittogether.blogspot.com

Penelope - 1940 g (4 lbs 4 oz) Lydia - 8 lbs!

Ooooook. It's past time for an update and I'm sorry for the delay. Things got a little crazy with my neck situation, Jonathan getting ready to leave, and life in general. The good news is that there is good news (and some bad, but mostly good.)

Lydia is gaining weight like a champ, learning to sleep 4 hour stretches at night, increasing her food, and becoming more alert. She's starting to follow things with her eyes and definitely looks directly at us when we talk to her. Precious. Her gas seems to be closer to a normal level since we've been using Dr Browns bottles and we're getting used to washing all of the extra parts! She had an eye appointment and her eyes are steadily maturing. She'll be getting her second Synagis shot this week to protect her from RSV and once the season is over she'll be able to be out and about more! Can't wait to show her off!

Penelope has had many positive steps too. She started taking feeds from a bottle once a day, then to twice a day, and last night she took her entire 30 cc (1 oz) feeding from a bottle. It must have been her going away present for her daddy because it meant the world to him to give her her first full feeding. She proved that she really knows what she's doing by repeating her performance today! I'm almost hesitant to say this but it seems she's turning a corner with her growth. She's also started to gain weight steadily for the last week. She's gaining an ounce or more most days and hasn't been losing. It's so exciting to call in the middle of the night when we're up feeding Lydia to see if they've weight Penny yet. It reminds me of when Jonathan and I were first dating and I would anxiously await a call or an email. That feeling of calling to check on her is similar to the feeling of checking my email hoping for something good from him. Silly? Yes. But true. Her oxygen flow is being weaned VERY slowly in order to give her the best chance at success with her bottle feedings and it seems to be working for her. Her hernia surgery, which we're all a little nervous about, will be done when the surgical department feels that she's big enough. That tends to be about 2.5-3 kg which is about 5.5-6.5 lbs. She'll have to be reintubated for the surgery so the longer it takes the better chance her lungs have a healing and getting stronger. Our little fighter has just a few more battles to win.

Speaking of battle for Penelope, her bad news is nothing catastrophic but it is a concern for us and a matter of immediate prayer. Last week the ophthalmologist saw the beginning stages of Retinopathy of Prematurity (ROP) which basically is the growth of extra blood vessels in the eye that if left untreated could end up detaching the retina and causing blindness. It's a common thing for preemies and they've come a long way in the treatment of it and the study of the cause of it. They're still not sure exactly what causes it but believe in is in some way related to over exposure of oxygen. Our sweet Penny has stage 2 ROP in her left eye and stage 3 in her right. What used to require hours of laser surgery and total sedation involving intubation, now can be fixed with a single shot per eye in just a few minutes. Because Penny's eyes are worsening so quickly, the retinal team has been called in today to do the shot in her right eye. If they get there today and her left eye appears to be in stage 3 (the qualifying stage for the shot) then they will go ahead and do the shot on the left eye as well. Now I know that a shot in the eye makes most people cringe (me included) but she's been having weekly eye exams involving numbing drops and dilating drops as well as the doctor using the eye speculum to keep her lids open. This procedure will be no more traumatic than that. She won't be happy about it, but it sure beats having to be on the ventilator again! So this is a prayer request but also a praise for what the Lord has done through the development of medical technology. Please pray for Penny right now that the medicine does it's job quickly and without any complications. She doesn't need any more complications!

Now, about the big baby in the family. Apparently my body decided to be quite clear about the level of stress it has been under and how it feels about that. It tried to warn me with the eye twitch and the discombobulation, the Lord even provided me with the means to manage the stress with medication, but nooooo, I was stubborn. I'm listening now! The muscle where my neck meets my shoulder has taken on the position of slowing me down. It began to spasm on Sunday and didn't become close to fully functional again until yesterday. Thanks to multiple visits from my friend the massage therapist, and a few different kinds of muscle relaxers and pain medications, we found our way through. But it wasn't pretty. We had to call in the help of some special "troops" and appreciate them more than they could ever know! It really taught us alot about depending on others and trusting that they are the hands and feet of God helping us in our time of trouble. It sounds a little over dramatic, but it's a really humbling experience to call someone to come to your rescue. It's even more humbling to have to ask them to help you put your shirt on, scratch your face, or get out of the bed...but that's a story for another day.

With all of this going on, it became glaringly obvious to me that something had to give or I wasn't going to be able to keep going. There are very few things that I have a choice about at this point in my life, and the choice to continue pumping breast milk for the girls is one that I have taken great joy in. It was the way that I was able to mother them when I wasn't allowed to do anything else. It's the most amazing gift that the Lord gives to provide exactly the nutrition that a baby needs (and at just the right price!). It was a very difficult decision for me to choose to stop doing this, but it is one that I had to make. The physical demands, the emotional toll it had (when I was in the other room pumping alone while other people got to hold and feed my baby), and the amount of time that it was taking away from the rest of the demands of life just became too much. So, farewell little pumping machine. See ya sucker! (hehe...get it?)

Finally, in regard to the decision about the antidepressants, we've decided that it's best for our family to use the medications that the Lord has allowed people to create in order to function properly. My mom made a great point that really helped me come to grips with it. If the doctor had told me that I had hypertension and that I needed blood pressure medication, I wouldn't hesitate for a moment to take it to help my body function. This is the same thing. My body needs some help for this season to be working at it's best so that I can be the best for my family. So, I'll be taking the pills, and making passing jokes about people not making me mad because I'm a little crazy. It'll be fun.

And last but not least, this is Jonathan's last full day at home before leaving for 7 weeks. Needless to say this is going to be exceptionally difficult for all of us and we covet your prayers greatly. He'll be on a secular tour which means that the environments he'll be in may not be the most positive, and the tour schedule itself will be pretty grueling. Not to mention that Penny will be having her hernia surgery, probably coming home, and both girls will grow and change so much in almost 2 months! Fortunately we have all of the video chatting available to us that we can afford and plan to make sure they hear their daddy's voice as often as possible. It's just going to be tough no matter what....but he's not going to war and he is coming home and he loves us all very much...so it could be much much worse.

Specific Prayer

* Penelope's eye treatment today to go smoothly and without complication
* Penelope's left eye to go ahead and qualify for treatment so she doesn't have to go through this again
* PRAISE for Penelope's weight gain
* PRAISE for Penelope's bottle feedings
* Our little family as we deal with Jonathan's being away
* Lydia's continued growth and development
* Bethany's crazy body


I'm sorry that this was so long and I didn't proof read it so if there's a grammatical error or it doesn't make sense...just use your imagination :) We love you all so very much and will appreciate your prayers until the day we die!

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?!?!

03.13 Update

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

Well God's timing is hilarious to me sometimes. This morning my sweet sister offered to watch Lydia so that Jonathan and I could go to church together before he's out of town for forever. My mom went home for this week so that Jonathan and I could try this parenting thing just the two of us, so we were grateful for the extra help.  Just before the service started I got a shooting pain in my neck (not Jonathan..this was an actual pain) which I recognized as some residual weak muscle from a car accident I had a few years ago.  This has happened once before where the muscle that controls the right side of my upper body just goes on strike and I can't raise my arms, turn my head, lean back, lean forward, swallow too hard...you get the picture...without the muscle seizing up and causing sharp pains. 

As you can imagine this makes taking care of a baby impossible.  And now Jonathan has 2 babies at home and one at the hospital.  Except I'm probably more of a toddler.  I have to walk very slowly and cautiously and I keep trying to do things that I shouldn't do so that he has to make sure I don't hurt myself trying to be independent.  It's a comical scene but not an ideal one for the situation we're in.

Normally I would take muscle relaxers and rest but because I'm breastfeeding that complicates taking medicines.  The whole breastfeeding is another issue in itself because I can't physically feed Lydia or even pump without pain.  The question of when to stop the pumping has been hanging over our heads for a few weeks now as we try to find balance,and I'm afraid this may end up being the deciding factor.  See how hilarious God is sometimes?  A dear friend who is a massage therapist is coming over tomorrow afternoon sometime to see if she can help the muscle relax, but until then Jonathan is going to need a LOT of extra prayer for stamina, patience, and supernatural rest.

OK, enough about the big baby (that's me).  The girls are both doing very well.  Penny gained up to 1710g which is 3 lbs 12 oz.  She took 15 ccs (that's right...half of her feeding) from Jonathan from a bottle last night which is HUGE!  She's still a little tachypnic (fast breathing because of her lung disease) but seems to be slowly improving there as well.  It's just a longer road for her.  There is a big decision to be made about when to do her hernia surgery.  When she has this surgery she'll have to be intubated again which could mean more damage to her little lungs.  We had hoped that we could wait for a few months for her lungs to develop before having to put her through being intubated again, but these hernias are very very large and it's not regular practice for the hospital to send babies home with such bad hernias for fear of complications.  Also the doctor said that a few months wouldn't make very much of a difference in her lung health to outweigh the risks of taking her home and then having to put her back in the Pediatric ICU instead of the Neonatal ICU (where all of her favorite nurses and doctors are who know her and her situations).  Anyway, your prayers are coveted here as Jonathan and I make yet another difficult medical parenting decision. 

Lydia is still thriving.  She's starting to wake up sooner and hungrier so I anticipate a growth spurt soon.  She's still weighing in around 6 and a half pounds.  We are having a little bit of difficulty with gas and some painful little digestion issues, but nothing out of the ordinary or excessive for a newborn (even if she is almost 3 months old).

Specific Prayer

• My neck to heal miraculously quickly so I can get back to being a mama
• Jonathan to have supernatural strength (even more than his superdad/superhubby abilities)
• Penelope's lungs to heal and her breathing to improve
• Penelope's bottle feeding attempts to continue to improve without any setbacks
• Penelope's hernia surgery decision
  
• Lydia's little gassy self

P.S. I know we've been delinquent with the pictures...they're coming soon..I promise

03.07 Update

Penelope - 1600 grams (3lbs 8.4oz)  Lydia - chunky dunk.

Our Penelope continues to be a drama queen but thankfully not as much as before.  She's still having her preemie desat/brady moments because she's still developing those necessary skills to help keep her body awake and active to remember to breath while sleeping.  She's still on oxygen but sitting more and more at room air or slightly above (21% - 25% O2) on 3L of flow(or rate).  They're still actively weaning her off of the high flow so that they can switch her back to the low flow canula and get some of that head gear our of her bed!  To recap, the reason for being on high flow is because sometimes when babies come off of the vent their lungs are used to being inflated by the pressure of the machine, once they get off the vent, without the resistance, the lungs collapse and they then have to go back on the vent to help get all the alveoli recruited again.  High flow, continues to push air through the canula keeping the pressure in her lungs up so that they stay inflated.  Weaning helps bring the pressure down, teaching and strengthening the lungs to work without the immense amount of flow keeping them inflated. The amount (or percentage) of O2 is what her body needs to actually oxygenate and that number is what we're most concerned about.  The higher the number means her lungs are not really absorbing the O2 into her blood stream well.  21% O2 (aka room air) is the lowest setting on the flow/O2 "blender" meaning that there's no added O2 being given to her, just what she would be getting without the flow, hence "room air."  That means that her lungs are oxygenating properly and she's doing the work on her own.  All that to say, the doctors believe that we'll be taking Penny home on some O2 because she's still desating some and because she hasn't been able to sit at 21% for more than just a few hours.  This all goes back to her BPD and her body having to grow out of it as time goes along.  So when you see us walking around with that cool O2 cylinder hanging from our shoulder, don't be offended when we tell you to put out your smoke.

She's recently been changed to some new vitamins and other minerals to help her body replenish things like calcium, potassium and iron that are being lost due to a combination of other meds she's had in the past and some she's still currently getting.  Her biliruben number is still teetering on the high side, not quite low enough to DC her meds for it.  A slightly concerning side affect to her bili issue is a change in her poop (oh yes... here we go again) For those that are interested, her stool consistency has been off for a week or so now, beige and clay like, not the healthy breastmilky stool that we've come to want and hope to see.  All you parents know what I'm talking about, everyone else... have a parent explain what that's supposed to look like.  This is in correlation to her liver not processing her bile right, causing the back up in to her blood stream aka the higher bili number.  Her skin tone has changed for the better as the number crawls back to the normal levels, she's got a nice flesh tone glow to her again and not that dull yellow tint anymore.  The nurses are pretty sure it's not going in the direction of c.diff because of the stool consistency so we're thankful that for right now and will stick that out of our minds.  They're still running labs to keep an eye out on what's going on with her numbers though, just in case there are other things that might begin to go awry.  An upside in the feeding area is that the other night, after requesting, I was able to PO feed her 5cc's from bottle!!  She handled it really well and so we're hoping that the order will stick for her to be able to have some good bottle feeding time, in small bits of course!

She's still receiving her IV antibiotics until her tests come back negative from the lab, which hopefully will be sometime this week.  It still was only showing staph aureas and nothing else.  The day that she had to get her IV in, the nurse and docs had to try over 7 times to get a good IV site because her veins kept blowing due to her jaundice.  Since then she's knocked out her IV two times and our nurse tonight believes that she's doing it just for her because she's knocked them out just the nights she's been there.  So the sooner this test comes back negative the sooner that IV port can come out and she won't have to get stuck as much!!  Her spot on her arm is progressively getting better and thankfully it didn't refill or pop up anything else around the area.

Penny's still scheduled for surgery on her bilateral inguinal hernias but closer to discharge time.  It had been originally thought that it would be after she hit a certain weight, which she has reached now, but the team has decided that they will continue waiting until she absolutely needs to have it as to keep her off the ventilator longer!  We DEFINITELY don't want her back on the vent if she doesn't have to be!

I think that's it for Queen Penelope... as for Sister Lydia, she's continuing on her growth as an at-home preemie!  She's been great to stay on schedule of eating, pooping and sleeping but we have noticed that since she's geting bigger, her schedule is starting to get off a bit.  We switched her to part formula this week, for dietary reasons, which has allowed her to start gaining more weight but has also caused her to be a bit more, well, stubborn about some things.  We're hoping that her little stomach will handle it all ok and not cause any issues.  We'll be talking more with the dietician to see what we need to do change up her meal plans and talking more with our pediatrician to see what the next goals she'll be needing to hit when she finally gets to term.  Hard to believe that they are a week away from being term babies!!  So crazy!  It has been a lot of fun to have her home and to dress her up all the time in fun new little clothes.  Still so hard to believe that this little life is now in our home and is ours FOREVER! ha!  It truly is a blessing and we can't wait to get Penny here as well.  That's going to be another game changer!  whew!

It definitely should be my turn to take over this writing business since, emotionally, I have the easier load. My dear wife has been under more emotional turmoil than I think I've ever seen and I truthfully don't know how to help her through this except to continue telling her that she's doing wonderfully at what she's doing right now.  The expectations set on her are much higher than most moms/parents would normally have to deal with because our timeline for "typical" growth patterns for these girls are all out of wack.  A lot of things that we are having to choose to do and stick to our guns about are going to be tough to explain to folks because we have preemie babies.  Like I've said before, it is a strange elite club to be a parent of ultra preemies and unless you've gone through the experience, people will not understand that our babies don't follow the same plan as term babies, they're hybrids of sorts.  She posted the other day and had expressed to me earlier that the "mommy guilt" has been starting to set in, the feeling like she's not able to take care of them in certain areas, or the "if only-ies" are haunting her along with the "what if's" clawing at her feet.  It's been tough for her to shake these demons off, letting the light of these babies' life shine through as the most important thing.  Also, the pull to be at the hospital with Penelope or at home with Lydia is starting to wear on us, causing our hearts to ache more and more.  We've been taking turns going to the hospital to spend a few hours with Penny which is a drastic change from being there 24/7 with her.  It wears at our hearts but even more so on Bethany's.  And so, these are our prayer requests.

Intercession Requests

• Penelope to continue tolerating feeds, processing her food, and continue learning the suck swallow breathe technique.
• Penelope to continue to stay healthy and to not get any more infections!
• Penelope's bili numbers to continue coming down to a healthy, normal number
• Penelope's liver to be ok and not over stressed
• Lydia to handle formula ok and not have too many "passing" issues.
• Bethany's mental/emotional well being.
• Bethany to rest well during the few hours that she does get to sleep so that her body doesn't stress out and decrease her milk supply anymore.
• Spiritual stability as we struggle with being away from our church body.
• To handle this unnatural pull between hospital and home, for us to trust that she is feeling our love and care through the short amount of time that we get to spend with her.  

It's still mind boggling to us the people that we still meet or contact us about joining us on this journey. We're humbled that God would use us to share His story of love to so many people and we continue to pray that Christ would be our guiding light and our beacon of hope and direction as we continue wading the waters of uncertainty.

And now to leave with you with a few snapshots of the miracles that you all pray for.

Daddy and Lydia posing for a picture

Lydia gets upgraded to a new bed!  This is a radiant warmer.

She's keeping up her temp so she gets to wear clothes!

One of a kind... (x2)

Shhh... I'm resting so i can stay warm!

Daddy needed some kangaroo time

"I pledge allegiance, to my paci" 

"When i grow up, I'm going to be a librarian..."

Streeetcching out.

"Does this footie make me look fat?"

"why, oh why!"

"whew! hard day's work."

"i mean, seriously can't we get those numbers to work out?"

Penelope getting some CPT (chest physical therapy) done to help clear some junk from her lungs

free massages?  yes, please!

don't look

I so gotcha...

Swing low sweet boppy chair...

Lydia snuggling with her Penny Bunny

Bethany made the panadas for their mobile.

we couldn't find the mobile parts so she took a brand new one apart and made one herself!

Guardian Panadas

Penelope's worrisome spot

"oh man! I thought the party was at your house!"

Wide eyed and wonderful.

"get that camera outta my face."

"uhh.. i didn't order the lamb chops.."

"seriously, you're crowding my personal space."

Lydi lamb snuggling with Penny

Holding on to mommy.

Some Papaw time

"some assembly required..."

"If i only had some wheels..."

Trying to be a Nobles.

"Step One... find step two."

After a half hour of work... this appeared. Thankful for Mah Mah and Yeh Yeh 

"Penny's new palace"

Penny being shy.