Scarlett is Free at Last

Scarlett moved to nasal cannula today!  She is now on a flow of 0.3 ml/minute.  She is getting her oxygen from the wall, so it comes out as 100%  oxygen mixture.  Scarlett looked pretty comfortable.  Signs that the nurses will watch out for are:

• Increased respiratory rate, especially for an extended period of time
• Increased heart rate
• Watching her stomach/chest movements and head bobbing indicating that she is taking extremely deep breaths
• Desatting

Basically if she is working harder to get the oxygen into and absorbed through her lungs, then she will need to go back to CPAP.  Typically babies will tell you within 72 hours if they were truly ready for the move.

Also, if everything goes well, we are targeting Grayson to make the same transition on Monday!

Here are pictures of my precious beauty!

Snuggled up inside my shirt.  I had her vertical on my chest and she decided she was more cofortable horizontal. 

 "I'm a big girl daddy!"

The shirt says it all: "Absolutely Perfect" 

This was how I found out the transition had been made, by looking through the web cam.  They asked us if we wanted it done while we were there but we knew she wanted the mask off ASAP!

12 and 38

Saturday we celebrated the twins turning 12 weeks old.  Today they are 38 weeks gestational age.  It is hard to avoid "what ifs."  What if we were still pregnant?  Would Trish be as large as a Recreational Vehicle?  Would she be on bed rest?  Would the twins be larger in utero than they are in real life?  What would it be like if we didn't know the twins so well at this point?  Is it possible we would love them less if their entrance into the world was uneventful?

We are very fortunate that we have spent nearly 3 months with these two miracles.  We have had an army of prayer warriors on our side, loving our family, praying specifically and generally.  It is because of people like you, I believe, that my updates are less frequent.  Thankfully, changes are slow and mostly positive.  Tonight I would like to enlist your help for other babies that are in NICUs or PICUs.  (If you are wondering, Neonatal ICUs are for new babies, Pediatric ICUs are for babies that have been home already).  God has really used this experience to stretch my heart.  I believe that my compassion amplified after I accepted Christ, but there is a mountain between sympathy and empathy.  A few years ago, a couple we love dearly brought a precious girl in the world with a heart condition that made her survival improbable.  I remember praying for them and for her.  Specifically I recall Trish and I having conversations starting "Could you imagine..." and the answer was definitely "No!"  Now, we can put ourselves in the shoes of any/everyone with kids that are fighting odds to survive.  Our issues may be different but now I know what its like to reach through the portholes of an isolette, praying through my tears, and worried if I leave the bedside that I may not see them breathing when I come back.

We met a couple this week that I've followed on Facebook and would like you to pray for them.  We've hit the point where we can safely imagine bringing Grayson and Scarlett home and I am thankful for that.  The Coy's are praying they can get into the best hospitals in the world in the hope that one of a handful of people alive will try to save their baby, Eliana.

This reminds me, that I am self-reporting that I have suspended my "Man Card" for a while.  There are very few days that go by that I don't cry.  I get teary thinking about the babies like Eliana.  I get choked up when I check in with Trish and hear that Grayson breastfed on his CPAP today, and was so text book that the staff wants to film him and Trish to educate other nurses about the process.  PS, after that call, Trish breast fed Scarlett on camera.  Even the right song or commercial pushes me over the edge.

Now for updates:
As mentioned, Grayson entered the "Feeder/Breather" stage today, meaning he can try feeding once/day while on his CPAP.  Scarlett has breast fed 4 times now.

The twins had their ROP eye exams today.  They both presented Zone 2, Stage 1 ROP.  They are both almost Zone 3.  Scarlett was not changed but Grayson's last exam results were "too immature to tell."  These diagnoses are OK as many babies "grow out" of it at this point and have normal vision.  It is something to pray about as it could lead to surgery or progress to blindness.

Scarlett spent the weekend at 21% oxygen, showing up Grayson at 26% as of today.  She did not make it to nasal cannula today because of the ROP exam.  The exam is extremely uncomfortable and some kids struggle afterwards so the staff wants to wait.

The kids are "playing" with toys now.  Grayson has spent a few hours in a swing and has a mirror and another toy in his crib.  Scarlett has a mobile that plays music over her crib.

Trish clipped both babies finger nails!  They were a danger to themselves and to us!  One night when I was holding Grayson, I think he was dreaming of milking a cow because he spent 3 hours scraping up my chest!  Unfortunately, the first fingernail she cut caused Grayson to bleed.  It made her gun shy and so she tried a couple days later and waited until I kangarooed them to do it.

Grayson now weighs 6 pounds, 8.6 ounces.  Scarlett weighs 6 pounds, 5.8 ounces.

Pictures of Grayson:

 Thinking profound thoughts like, "Should I eat at the chest or just swing through the gavage-through?"

 Not sure why the nurses thought he would like Ohio State sheets...

"Please daddy, no more pictures!"

Snuggle Time! 

Scarlett:

Ballerina Scarlett 

 "Mommy is helping me hold my pacy in"

 "Can we puh-wease take this stuff off my head mommy!?"

11 and 37

I apologize that I have let a week go by in between posts.  I wanted to post over the weekend but life got in the way.  At home we celebrated birthdays, replaced a water heater, and battled sickness.  Additionally, we are still getting in the groove with the longer commute.

The twins are now 11 weeks old, and 37 weeks gestational age.  We are loving the perks of being at main campus but still miss our old nurses.  The biggest difference (other than the commute) is the sheer number of resources.  For example, when our kids had their heart issues at Riverside (Scarlett's SVT and Grayson's Pulmonary Hypertension), we did EKGs and echocardiograms that were sent over to the main campus to be interpreted.  Their doctors spoke with ours.  Here, the doctors are physically examining the babies, and talking directly with the nurses. practitioners and doctors about what they've observed.  We also now have the ability to see our kids almost 24 hours/day through cameras at their bedspots!  They look a little something like this:

Grayson:

Scarlett:

Our biggest update of the week is about Grayson.  As you know, the pulmonary hypertension diagnoses is what propelled our move to main campus and then earned our way into the BDP unit.  Our plan was to have him on a CPAP pressure of 8 and make sure he stays highly oxygenated (constantly at 100%) for 2 weeks to see if it went away on its own.  If it didn't, we would discuss medication but that treatment would translate into several months of in-patient treatment.  In the later part of last week (less than 1 week into the treatment), Grayson started having some issues that we still can't track down the cause of but on Friday they decided to do an echo.  His echo showed that the Pulmonary Hypertension was gone!!!!  There is a lot going on in this situation that I will never understand, but this piece is so obviously orchestrated by God that I can't do anything but praise Him!

Unfortunately we do have other things going on that I will need to solicit prayers for.  Grayson's typical day includes 1 apnea spell and a couple other "desats" even though he has been on oxygen levels greater than 35%.  Most of the week was 40 but as of right now he is at 32.  They think he may have reflux and now they are feeding his milk over a 30 minute pump.  On Thursday they will insert a second tube through his nose, down his throat, and monitor how much reflux he has in a 24 hour period.  His desats seem to be tied with him being irritable and arching his back, which is a common sign of reflux.

Scarlett's heart condition continues to be an enigma.  On Saturday they discontinued her heart medicine due to some blood pressure issues and her looking a little pale.  Also, I had raised the concern that her heart rate seemed low.  Where her base was around 150-160 at birth, I was noticing her dipping into 100-110 on a regular basis.  This CAN happen due to growth, but in combination with the other symptoms they decided to stop the medicine.  However on Sunday, she started having an escalated heart rate.  We started noticing it around 185-195, but by Sunday evening she was having true tachycardia with a heard rate around 225-230 for 10 seconds.  I saw this happening again last night while I was holding Grayson.  During the day today the nurse noticed a higher heart rate a couple times but it wasn't too high and she was agitated when it happened.  For now, we are waiting and watching closely.  My concern is that there is an underlying issue going on that we don't know about yet.

Otherwise the twins are growing well.  They are now on a 24 Calorie recipe which is half breast milk, where as the 27 calories formula they came off was more formula/fortifier.  Grayson is currently at 2765 grams (6 pounds, 1.5 ounces) and Scarlett is at 2745 grams (6 pounds, 0.8 ounces).

Here are the pictures of the room I promised.

The door where Trish hung up the name tags that were made for them at Riverside.  Grayson is the first bed on the right.  Scarlett is by the window. 

 This is in the "common/sitting area" between our half and the other two beds.  We are looking at Grayson's bed with Scarlett immediately on my left.  We have our own sink in the counter behind the door.

From Grayson's bed looking out towards the common area. 

Standing by the sink looking at Scarlett's bed spot.

11 Week Photos from Saturday:

Scarlett 

Grayson 

The Next Day

We had our first rounds in the BPD unit today.  We met Grayson's cardiologist who specializes in Pulmonary Hypertension.  We met Dr. Lynch who will be their physician for the next 3 weeks.  This world is much bigger than Riverside.  Scarlett will probably have a different cardiologist than Grayson because of her SVT.  It seems as though the proximity allows these specialists to be assigned to the case as opposed to one-time consults.

The only real updates from rounds are that we need to wait and see how the kids do on CPAP.  They explained the extra pressure helps stretch the lungs which will help them grow.  Also, we are keeping them highly oxygenated (95% or higher) so they are not straining to breathe.

At one point in rounds I braved asking about timelines.  If everything were to be flawless from here on, Scarlett is probably about 4 weeks from going home.  Grayson is probably an additional 2 weeks.  BUT, there are many variables that delay things.

Hopefully Grayson's Pulmonary Hypertension will be cured by the additional respiratory support.  If they need to resort to medicine, his stay will be extended by several months.  Yikes!  We also have possibilities of complications with their pre-existing conditions, new things coming up (especially viruses right now) and then the "normal" preemie challenges like feeding and breathing without issues!  With all of that going on, we can rest in God.  He has brought us to this point and he will continue His work!  We know that the journey will be a hard one and that there will be plenty of opportunity to rest in the comfort of Jesus!

We did give Grayson a tub bath today!

Scarlett:

34 Weeks and National Champions

We were transferred to the BPD clinic today.  They were able to get a room with two beds!  I guess typically they keep 1 bed open, but today they discharged a patient who had an empty bed next to them so the medical team decided to move both babies into those bed spots.  More evidence God is in control!

We tried to take pictures but they didn't turn out very well, so we will try again tomorrow.  The twins had eye exams today so we had to keep the lights off.  The suite is huge!  Here is my best attempt at a paint drawing to give you an idea of the layout.  The perspective is off but you can look back at this diagram when you see the pictures.

You can see that we have our own "half" of a quad, with a large common area with plenty of seats.  They also had a bouncy seat set up and this unit has a large focus on development, so I imagine they use that space for the bigger kids.  As the practitioner said to us earlier tonight, "Its easy to Sat 100 when you are lying in optimal position, but this unit focuses on keeping them saturated while they do age-appropriate movements."

We will start a steep learning curve tomorrow at rounds.  Today was really just transitioning into the unit.  They made a few changes today:

• Lasix go from every other day/twice per day, to every day/once per day.  They feel the consistency takes some of the variables away.
• Scarlett will go back onto a CPAP.  They won't do flows that fast on nasal cannula.  She has been on a flow of 3 and 4, but at her weight the BPD unit won't go faster than 0.3.  They want them to keep their lungs well inflated as it promotes growth.
• We will hold off on feeding until next week.  At 37 weeks, we can give them 1 bottle/day, even while they are on CPAP.

The facilities are a huge step up for us.  It will be impossible for us to compare the staff.  Riverside was perfect for us the first 10 weeks.  I hope our old nurses are part of the twins lives for a long time, and know they will be in our hearts forever.  This unit seems to be what we need medically, now and moving forward.

We also had a couple check-ups done today, eyes and head.  Neither kid had any changes with their ROP or brains.

The transitions threw us off our schedules.  Grayson is looking very concerned that we forgot about his meal time! 

This was how Scarlett looked when I showed up tonight.  She may have been guarding her eyes from any further attacks (she had her ROP exam today) or she may have been being her dramatic self! 

Right after her first tub bath.  We removed her nasal cannula and this is the last picture before her CPAP comes back on :-/  She also is pretty hungry but luckily she found something to chew on!

10 Weeks

Weights:

Grayson: 5 pounds, 10.7 ounces

Scarlett: 5 pounds, 8.9 ounces

 



What a weekend!  So as of Friday, our plan was to stay at Riverside, monitoring Grayson's Pulmonary Hypertension.  On Saturday morning, we received a call from the doctor.  The unit was filling up quickly so she wanted to talk to us about transferring down to the main campus.  The thought process is that Grayson would need to be part of their BPD unit eventually, so why not get him in the same physical location?  If they moved him now, they would move Scarlett too.  If they waited to move him in a couple weeks, Scarlett could be close to going home and would stay behind, leaving them in two separate hospitals.  Also, moving them freed up two bedspots where as another patient transferring would only free up one.

I have to admit that I felt God was answering a prayer, but it wasn't the answer I wanted, the answer we received on Friday when the doctor told us his PH wasn't that bad so we can stick with our comfortable routine while they tweak his respiratory support.  Maybe Friday's decision took me off guard and made Saturday's conversation that much harder to swallow.  We spent 10 weeks growing an extended family and then were plucked away without saying goodbye to most of them.  It wasn't the bitter-sweet goodbye we imagined, riding off into the sunset (OK, let's be honest, in Columbus it would be more like riding off into the cloudy gray sky) and taking the babies home.  The ladies of the unit plus Justin, Anthony, and Nathan helped us more than they could ever know.  They listened when we vented, informed us when we were ignorant, answered us when we asked repeatedly, and empowered us to fill the role as the most important people in our child's care team.  US.  A teacher and a sales guy, whose qualifications included expired CPR certifications and having seen every Grey's Anatomy episode (she makes me watch!)

Well, logistically the transition went well.  They brought 1 giant Mobile ICU unit and transported them together.  Trish rode in the front while I sped along 70 trying to get there as quickly as possible.  By the time I made it through registration and found their bed spots, the transport team was wrapping up.

After 24 hours, most of our observations are very positive.  We have had 3 great nurses: our day nurse today, Stacy, who admitted us yesterday and Amanda and Annie last night.  Our pods/bedspots are larger by about the width of a crib.  We can sit our chairs side-by-side and still have room for the nurse to come in and chart.  As silly as this may sound, I also love their lighting.  At Riverside, the lights were directly above the kids and seemed to shine right in their eyes.  Here the lights are above the curtains and shine out to towards the pod, but are high enough they light the space without bothering the kids.  Lastly, they seem to encourage bringing items that help pass the time and said on the welcome video to feel free to bring your laptop!  Riverside did not want them at the bedspot because of germs, but I am currently writing next to Grayson while Trish finishes Kangarooing Scarlett.

 Our old home, bedspots B1 and B2

The only downside is we drive past Riverside to get here, and this is an additional 10 minutes or so drive.  Also, the hospital is huge, so from the parking spot to the bedspot is probably about a 12 minute walk.  This may end up being a positive because my waistline has grown since the twins were born and that walk should at least slow that, haha!

 Our current home, pods 78 and 80

For now, we get to keep the same doctors so we saw a familiar face this morning.  He heard the BPD unit has 1 opening, and spoke with the cardiologist who read Grayson's echo.  They are putting the process in motion to get him an official BPD consult with the goal being to move him over there (Pulmonary Hypertension is related to Bronchopulmonary Dysplasia).  It could happen as soon as Monday afternoon or we may be denied for now.  The BPD unit is one of the best in the country so they often have a wait-list from across the US.  Our doc had no way of confirming if there was a wait list candidate vouching for that opening.  Also, if we move to the BPD unit we will be transferred to a different group of physicians.

 Their new name tags.  Brutus' eye fell off but the nurse taped it up!

In other news, for those of you in the Steubenville area, you can check out the twins on the front page of the Herald-Star.  A reporter, Dave Gossett, has been a long time family friend and reached out to the biggest Buckeye fans from Steubenville, including "Papa" Frank Vallera.  I believe Mr. Gossett expected Frank to be finalizing plans for Dallas to see his school win the first ever College Football Playoff National Championship.  But Frank and Sue have spent several weekends in Columbus the past 2.5 months and therefore don't have the time to fit that trip into their schedule.  So the proud Papa was too happy to explain to Mr. Gossett and sent him a picture.

And on that note, Grayson says, "It's time to go Duck huntin!"

 Scarlett says "1 to go, let's go Bucks!"


Pulmonary Hypertension

The twins had echocardiagrams today to follow up on their PDAs.  Scarlett's PDA is still there but is small.

Grayson's has closed!  BUT the echo revealed he has Pulmonary Hypertension.  This condition makes it too hard for him to pump blood through his lungs and is the leading cause of death for babies with BPD after their first month of life.  I found that factoid about 5 minutes ago while googling the condition and seeing a link from our very own Nationwide Children's Hospital.  We will find out more tomorrow, but here is what we know now:

• The condition was not present 1 month ago on his last echo.
• The main campus cardiologists interpreted the echo and sent the results back to our NICU.
• Our doctor tried to talk to the cardiologist about a treatment plan but they never connected.

We assume if the condition was dire enough there would have been more urgency from the main campus cardiologist.

We also know that our NICU doesn't treat this condition so we will need to transfer to the main campus for treatment.  Our current team knows how involved we are and knows it will be tough if our kids are split up, so they will do everything they can to keep them together unless:

• They don't transfer him right away and when they do, Scarlett is close to going home.
• They decide they do need to get him there ASAP and only have 1 bed spot.
• They feel like they can't justify a reason to transfer her for the insurance to pay.

In the meantime, Grayson is back on his CPAP.  Trish said he was extremely angry when they put him back and it was the loudest/longest cry he has let out so for :-(

We have spent 69 days growing close to our nurses and practitioners.  If the best option medically is to transfer we will obviously jump on it, but it will be very difficult emotionally.  

Please pray for Grayson's health, and our mental and spiritual state.  We know what God created and how sin entered the world.  We know that God will use us and this situation for His glory.  We know that this pain is temporary and that these bodies are temporary.  We know that we are sinners who don't deserve anything good.  But we can't help but slip into our selfishness some times.  Like when it dawns on you that the routine of visiting your newborns then leaving them behind every night is normal.  Or when we see your beautiful babies home, snuggling with you or keeping you up all night and it feels like we will never get there.  Or when we see your facebook posts about how great or annoying your pregnancy is, and we wish we could rejoice or complain with you.  Please don't hide these things from us because we are extremely happy for you, but we expected to be there too.

UPDATE (11:59AM on 1/9/15): We were able to speak with the doctor today at rounds. The good news is they are considering Grayson's Pulmonary Hypertensions as "Mild to Moderate" and don't want to try medicine yet. He will have a follow up echo in a week to see if his condition has changed, but the only thing we are doing different at the moment is that he will stay on the CPAP with a higher pressure (6). We won't try medicine yet. They did tell us that we should no longer hope to have him home by his due date (Feb 9th).

9 weeks

First, I apologize this post took so long to come out.  We had a weekend of family, fiascoes, and fun.  Trish's sister was in town from LA and we celebrated our family Christmas.  Our ceiling over the bathroom sprung a leak but I believe I fixed it.  The best part is that I had to remove a brand new closet system that I had installed the day before to investigate the leak's source.  The fun parts were seeing our babies, family, installing that closet system (twice), assembling the cribs and putting them in place.  We have a few more things we want to accomplish in the nursery before we take pictures but we promise we will share it with you!

So the cribs...  This feels awful to admit to the public, but if someone else is going through a similar situation I want them to know they are not alone if they feel this way.  We have had the cribs for about 3 months now.  The weekend I planned on setting them up in the nursery was the weekend Trish went into labor.  From that point on, I was terrified to move them.  As much as I hoped, prayed, and believed our kids were coming home some day, I wasn't willing to bet on it.  I didn't want Trish to look in a room with 2 cribs if we didn't have 2 babies, and I didn't want to have to deal with the emotion while I tried to figure out how to get rid of one or both.  At 25 weeks gestation there is a 75% mortality rate.  If I did my math right (no guarantee there!) that meant we had a 56.25% chance of bringing them both home....

With that said, I am pleased to announce that I am no longer worried about that!!!  The NICU nurses won't confirm that we are "out of the woods" but they have definitely changed their optimism.  We can hear it in their language, "Now when you are home..." and "We use this/do it this way, but when you get home you..." We can also see it in their faces.  There are no guarantees and preemies can backtrack, especially if they catch a virus.  But today they are 35 weeks and are looking very healthy.  At this point, the most obvious issues are respiratory.  Grayson tried nasal cannuala on New Year's Eve and made it 23 hours.  Today they decided he will try it for 3 hours, then cycle back to CPAP for 9 hours and go back and forth.  If this goes well, they will probably cycle him in 6 hour intervals and work towards getting him off CPAP.

Scarlett is doing pretty well on nasal cannula and today they decided to move her from a flow of 4.0 to a flow of 3.0,  They can take bottles and/or breastfeed on the cannula and Scarlett has impressed everyone.  She has probably taken a full bottle about half the time.  Here is what she will be working on to go home:

Checklist to go home:

1. Off oxygen OR have a nasal cannula with a flow of 0.1
2. 5 consecutive days without a spell (heart-rate accelerating or decelerating) that needs intervention
3. Taking full bottles 100% of the time
4. Able to sit in their car seat without desatting.  We will bring it into the NICU (Yikes!  I didn't think about that, but we better get ours soon, haha!) so they can set our baby in it for a while and see how they do.

Things that DON'T impact them coming home:

1. Weight.  Scarlett is at 5 pounds 1.5 ounces and Grayson is about half an ounce behind her.
2. Time.  On February 9th they will be 40 weeks gestational age, which is the ideal time for them to be born.  Under those optimal conditions in the uterus, they have fully developed and are ready to see the world.  Outside the womb, it is just harder for them to grow.  Obviously kids are born a couple weeks all the time without any negative consequence.  Likewise, it is possible they could come home sooner, but it is also very likely that we add Valentine's day to the list of holidays spent with our babies in the NICU.  There is no "age limit" in the NICU, but depending on the barrier, they may send us downtown to Children's main campus to see specialists.
3. Space.  Because Riverside is a surgical hospital they try to maintain an empty bedspot in the NICU.  They can hold 36 total babies, but if they get close to capacity, we have "earned" our tenure.  They won't send our kids home prematurely because they run out of space.

So we are hopeful that it isn't too far away, and are starting to see the light at the end of the tunnel.  We have made friends with other NICU parents who have been there for weeks waiting for their child(ren) to do these things.  We are extremely thankful that we are now at this point.  Look how far these miracles have come!!!  I write this with tears in my eye and a heart that yearns to see how God uses them!

But now, for the important part:

2 Months Old

Never trust a preemie!  Have we learned that lesson yet?

At rounds yesterday we made the decision to try Grayson on nasal cannula.  Just before rounds today Grayson had his third major spell since the change and went back onto CPAP.  We had fun in the meantime and were able to get some good pictures showing most of his handsome face!  He also took a couple bottles in those 24 hours with the highlight being the 20 mls (out of 34) this morning.

They had their infant hearing screens today and both passed!  Yay!  I think this is the first

Another change that was made at rounds today was we decided to reintroduce cue-based feedings for Scarlett.  This means if she shows interest in eating we would attempt to breast or bottle feed.  The decision was made that we would never give her two feeding+s in a row.  For example, if she takes a bottle at 6, she won't be given that option at 9, but will have the option again at 12.

At her noon care, she showed some interest so I was able to attempt to feed her for the first time.  Bottle feeding a preemie is not the same as bottle feeding a full-term baby, so we had to get the tutorial and watch the first bottle.  We did this yesterday with Grayson.  So today, the nurse walked me through things step-by-step but I did the work (well, really Scarlett did the work, I just made sure she didn't take more than she could handle.  About 20 minutes later, SHE FINISHED HER ENTIRE BOTTLE!!!  I don't want to get too hopeful in case it is an anomaly, but we've become friends with several NICU parents who have kids that are otherwise healthy, but still have to go through the rigmarole while their kids won't take their entire bottles and need to be fed through tubes.  But I am so happy that her first complete bottle was in my hands, and I hope that she keeps it going!

I tried to give him a pep talk before the transition.

Grayson's first bottle!  He took 4 mls.

Party Animals!  Grayson passed out after drinking straight from the bottle!

Close-up of her dress!

After reviewing the pictures we realized we didn't have a close-up of Grayson's tux, so we took one last night, but the nurse had already taken his outfit off.

Grayson eyeing the baby next door because he thought he heard "Roll Tide."  He calmed down after I explained the baby said "Kole cried."

Scarlett says, "Let's go Bucks!"

Feeding my baby girl! 

She took down the entire bottle!!!