New Year's Eve Eve

Whatever you ask in My name, that will I do, so that the Father may be glorified in the Son.  If you ask Me anything in My name, I will do it. - John 14:13-14

We had a great day today!  God answered our prayers!  Scarlett has seemed to settle into her nasal cannula overnight and only had a couple alarms.  She did not change weight so she is still 4 pounds, 12.9 ounces despite getting her lasics treatment today.  I expected her to lose weight because I changed a wet diaper that had 61 grams of urine in it, then bathed her, then kangarooed her while she filled her diaper with very stinky poop.  She is currently on 25% oxygen!

Grayson had his CPAP pressure reduced to 4.  He also stooled today which may be the first time he did so on back-to-back days!  He gained 80 grams and is now 4 pounds 10.4 ounces!  He is also currently on 25% oxygen!

We didn't have a whole lot to update today but the good news is we have LOTS of pictures!

12/29
Grayson's Bath:

Scarlett:

12/30
Sleeping Beauties!

Scarlett's Bath Time

34 Weeks

Today they reached the 34 weeks gestational age.  By now we wanted to make sure the nursery was completed, had our bags packed, toured and decided which hospital we wanted to visit, rehearsed the drive, and red our books about sleep schedules, raising twins, and being Godly parents.  Obviously, the twins had different plans.  We found the hospital and didn't really feel we had a choice because Riverside was the place we knew we would be if there were any complications.  I plan on putting the cribs together and installing an Elfa closet system this weekend.  The book reading will have to go on hold unless I can find digital versions of the books we bought that we can read while kangarooing.  BUT we have already had 8 weeks to love on our babies!!!

Today's updates.
I was wrong on yesterday's weights but today Grayson lost 25 grams and is now 4 pounds 7.6 ounces.  Scarlett gained 70 grams and is now 4 pounds, 12.9 ounces!

Scarlett struggled last night on her oxygen and had a couple Brady Desats.  At one point they increased her oxygen from 30 to 35 and then ultimately moved her up to a flow of 4 liters (from 3).  This morning she was back down to 30 but with the increased flow.  Because of those issues, they decided to hold off on her eating for now and told us that she may need to go back to CPAP.  However this evening her oxygen level is at 26%, so hopefully she remembers to keep breathing.

Grayson had his bath day, which came in handy because a couple hours before Trish bathed him, she was holding him while he loaded up his diaper!  He has an oxygen of 24% at the moment.

He had his caffeine discontinued today.  They will give young preemies caffeine when they are on respiratory support that is not a ventilator because it helps the brain stay alert and remember to breathe.  Grayson has been on it since just before Thanksgiving.  Scarlett came off caffeine last weekend when she had the tachycardic events (which have not resurfaced!)

They also had their ROP eye exams today.  This was a follow-up from 2 weeks ago when both kids had immature eyes.  Today, Grayson's eyes were still too immature to make a determination but Scarlett was diagnosed with Stage 1 ROP.  As with many other diagnoses, this could lead to something scary and debilitating (blindness) or she could grow out of it and be completely OK.

I will have to post the pictures tomorrow because I left the camera at the hospital :-/

8 Weeks

This weekend was a whirlwind as we needed to balance time with our existing family and new additions.  We couldn't help but feel whoever we chose to spend time with was choosing to neglect the others.  We did our best.  The kids seem to be more stable so it makes it easier to be away, but they are also getting bigger and that adds more opportunities to interact with them.

Today, Grayson was moved to a CPAP pressure of 5.  This was a goal on Saturday but he was in the middle of a spell when the doctor came around and his oxygen needs were higher than they felt comfortable with.  But the CPAP pressure are variable.  For example, I believe today the machine was delivering a pressure of 8, knowing that it would lose 2 units of pressure (I believe the units are cmH20 but we don't discuss it in the NICU).  When he opens his mouth or turns his head (adjusting either his mask placement or airway opening), the pressure might drop to 3.  So when the doctor orders the pressure to be set at a number, this is more the baseline that goes down in the records.  The nurses will try to achieve that pressure, especially when they are already messing with them such as their care times every 3 hours.  But if their pressure drops, they are sleeping peacefully, and getting their oxygen levels, they will probably not adjust him.  So I don't expect things to change much, other than the doctor will feel more comfortable taking him to a pressure of 4 soon.  That is typically the last step before they typically decide to try a high-flow nasal cannula.

Which brings me to my first exciting update.  At 8 weeks old (Saturday), Scarlett moved to the high flow cannula!!!!  She had a little bradi-desat (heart rate and oxygen levels dropped) when they were messing with her to make the transition, but otherwise she has done very well.  She has her desats but it is no more than she was having before.  The biggest difference of the machines is the cannula doesn't really offer the pressure the CPAP does.  Technically they can increase the flow of the oxygen but really Scarlett has to do 100% of the work to get the oxygen to her lungs.

The best part of this breakthrough is that it is a gateway to other milestones.  At 33 weeks gestation (last Monday), babies can theoretically suck, swallow, and breathe.  Prior to that, they won't let the babies try to eat, but instead feed them through a tube.  So today, the doctor said we could start letting Scarlett try to eat!  She spent her 3pm care time with mom breastfeeding!  Then she had her first bottle at 6.  She is a typical preemie so she didn't take all of her food and needed to be given then remainder down her tube.  The bottles are pretty easy to determine how much she gets.  She took 15mls on her first bottle, just under half of her feeding.  When breastbeeding, they have an estimate for how much fluid she receives based on how much time she is actively sucking, and a 30 minute time limit to finish.

Today Grayson weighed 4 pounds 6.9 ounces and Scarlett weighed 4 pounds 8 ounces!

I cannot explain how proud I am of my daughter and how excited I am for her twin to follow suit.  I thank you for your prayers and support and thank God for comforting us.

Trish with Scarlett.  If she looks tired it is because this was around midnight on Saturday night/Sunday morning.

Merry Christmas Eve

Thank you for coming alongside us for the past couple months.  Trish, Ethan, Grayson, Scarlett and I want to wish you a Merry Christmas!

33 Weeks

Thank you for all of the support the past couple days.  The words of encouragement and prayers are extremely helpful and I cannot thank you enough.

We have some updates, and they are almost all positive!
1) Scarlett's heart rate has not escalated again since Sunday night.  The doctor explained how the EKG showed that it is not truly SVT, but clinically it presented itself that way because she responded to the tricks that are supposed to bring you out of it.  Now the medicine seems to be working because her heart rate seems to be slightly lower than typical (my observation, not the medical staff's) and she has not had a tachycardic event.

They ran a couple labs (CBC and CRP) and don't believe there is an infection.

Her electrolytes are very out of whack but they don't think any individual level was off enough to cause it.  They are trying to give her supplements and lasix to get her back to normal levels.  Personally this is a concern of mine but when I brought it up at rounds the doc said that he  had already discussed the situation with another doc and were moving forward with this plan.  This evening we felt she was a little more bloated even though this was a lasix day.  I am trying not to worry too much because they measure their diapers every 3 hours to keep track of their outputs.

2) Grayson moved to a crib Monday!  His temp has held up so it is unlikely he will go back to the isolette.

3) Santa visited today!  He ended up being the first person to hold them together!  That part was a little bittersweet for Trish because she wanted to be the first, but it made a precious picture.  Thanks to Aunt Valerie for the cute "First Christmas" outfits!

4) Scarlett spent most of the day with her oxygen level at 21%!  Here is a picture of her proving the 21% and that her oxygen level was measuring 100!  This picture also shows half of our "home" for the past 7.5 weeks.

5) Both kids weighed over 4 pounds today!!!  Grayson registered just above the 4 pound mark.  Scarlett was 4 pounds 2 ounces but has had a couple days of large gains so she may be retaining some water.

6) Although she wasn't the first, Trish DID get to hold both babies together this evening!

I am not sure why this picture is turning 90 degrees when I upload it but its 1:30 AM and my eyesight is getting blury, so I am done.

Roller Coaster

Some of my favorite moments are when one of my babies grab onto my finger and won't let go.  In those moments I feel I am their protector and comforter.

Yesterday I commented about the NICU journey and about how many people refer to it as a roller coaster.  I was hoping that our 7th week would become a norm for us, because it went so well after 6 weeks of struggle.  But today we realized where that metaphor and the "2 steps forward, 1 step back" saying comes from.

I spent much of the morning in awe of the way God has provided the past 2 months.  I am not eloquent enough to describe the love we have felt.  Every time someone reaches out and says they have been following our story and praying for us my heart fills with gratitude.   We heard that a few times this morning at church, from people whose kid's we've had in our preschool classes and people who were strangers yesterday.

Honestly, some of this has been overwhelming.  I was not raised with religion but instead a doctrine of self-help.  Unfortunately it was reinforced on many occasions when I did decide to rely on someone else.  I share this because as grateful as I am, I am also a little uncomfortable.  As a Christian, I have felt the joys of truly loving others, but am still learning to accept God's love and grace.  So please know that I value you every second you think about my family!  Don't be a stranger, let us know you are coming along side of us!

So after a perfect morning at church (amazing praise & worship, incredible lesson, and the friends I already referred to), we went to the hospital to make rounds.  We squeezed in to our bed spots just in time to be the final rounds of the day.  The doctor decided to lower both CPAP pressures, but only by 1 (baby steps).  He also decided to move Grayson into an open air crib (as soon as one can be located so he hasn't transitioned yet).  We discussed Scarlett's EKG and learned that they weren't any clearer on what was happening,  They were able to rule out a few things that it was not, but the only change that was made was to discontinue her caffeine which was being given at a dose of 10 mg/kilo of her weight to help her brain remember to breathe.  Our game plan was to hope it didn't happen again

But it did.

Trish was at the hospital expecting to hold Scarlett around 6pm, but when she came out of the pump room and rounded the corner, there were about 10 people surrounding Scarlett's bed.  She was in the middle of a tachycardia episode.  Her heart was racing around 220 bpm (baseline is about 155) and the team was trying to stimulate her vagus nerve which can slow the electrical impulses that control your heart rate.  They were trying things like sticking their finger down her throat to gag her, and putting ice in a glove over her eyes.  They were bringing her heart rate back down, but she would go right back up.  They did another EKG.  After speaking with the cardiologists, the doctor decided they would treat her for Superventricular Tachycardia (SVT).  Her EKG results didn't seem to show SVT but her behavior did, so they will treat her with propranolol, a beta blocker.

Another possible cause is that her electrolytes are out of whack due to her lasix treatment.  Her potassium, sodium, and Vitamin D levels were all elevated.  She was taking supplements for potassium and sodium to balance what she lost in her lasix trial.  The vitamin D escalation could also be a side effect of lasix.

When I left, we were going to hold off on giving her more supplements until after rounds tomorrow.  They are also skipping her 9am dose of lasix so the doctor can decide if they want to try a different diuretic.  I believe I am going to ask to take a break from diuretics in general until we can get all of her nutrient levels back in order.

So tonight I will ask for prayers for her and the medical team, that we can identify the issue and treat it quickly.  If I can be selfish enough to ask, please also pray for Trish and I.  This event has been incredibly taxing emotionally and Christmas will probably not help that for either of us.  I haven't been able to get in the Christmas spirit despite it being my favorite time of year.  Typically by now we have lots of decorations put up, dozens of deserts made, and have been blasting music.  I am not sure why, but I can't even bring myself to listen to 104.9 this year.  Our Christmas CDs are still packed up (how long will this post stay up before someone reads it asks what a CD is???)

Grayson 

Scarlett

7 Weeks

The twins turned 7 weeks today (Saturday).  Both of them have been on lasix and were weighed without their CPAP gear on, so we feel pretty confident in their weights:

Grayson - 3 pounds, 12.5 ounces
Scarlett 3 pounds, 11.8 ounces

 In rounds this morning, the doctor said his plan would be to lower the pressure on both of them on Sunday.  Scarlett would come down to 4, her last step to coming off the CPAP, and Grayson would come down to a pressure of 6.

As of this evening, Grayson had a pretty typical day for himself; some moments of his oxygen dipping below 85 but bringing himself back up without medical intervention.

Scarlett also had a typical day for the most part, having had a couple Apneic spells where the nurses reminded her to breathe.  I don't know if the doctor will decide to stall on weening her pressure because she is still not consistently at 21% oxygen (her baseline is 24-26%) and she is having these issues, but we will find out in the morning.  Today, she also had periods where her heart was racing higher than they would like.  They decided to do a 15-lead ECG to see if she was developing an irregular heartbeat but the night nurse had not heard anything reported back.  They also didn't call us to tell us it was happening, so I am hoping that means it is not a big deal.  We didn't find out until we called in to check around 11pm as we went down to visit with my mom, sister, and their families.  After a string of great days in a row and hearing good news at rounds, we decided to head down to Dayton because my sister was arriving from Virginia.

The only other thing that seems to have changed is Scarlett's belly seems to collect more air than it had in the past.  The CPAP pushes air into their nose and some of it gets into their bellies.  Their feeding tubes are kept "vented" to let that air escape.  I noticed on Friday night while holding her that she seemed to be pushing more food out than usual, because on two occasions I heard it bubble up and when I looked over it seemed like a lot.  The Practitioner and nurse both thought her belly looked distended but said it felt soft (which is a good sign, if it hardens up it can be NEC which is not good!)  In fact, while squeezing her belly, they were able to help her have a bowel movement!  But this morning when we were there, we noticed she had pushed back almost more than 5mls of food.  I share this because we don't think we should be worried about it, but if any of our NICU and/or medical friends think this could be related to an increased heart rate, please let me know.  As always, I want to be as prepared as possible for our discussions in the morning.

These updates may not seem as positive today but we are still feeling great.  A week ago these things would have probably seemed inconsequential compared to our other hurdles.  Honestly this week has felt like it was too good to be true.  They do call it a Roller Coaster ride for a reason.  The thrill in roller coasters are you can't get used to the position you are in because it is about to change.  Weeks 0-7 were more like a rocket ship taking off.  The countdown began and we nervously waited to see if the weather would change (hoping it would) and the launch date would be postponed.  When the timer hit 0, we had the thrill of our lives as we took off, but more force than you could imagine bearing down on us, squeezing us, seeing how prepared we were.  We had the shear joy that we were astronauts headed into space but the fear that our rockets could blow up at any minute, knowing that statistically speaking that was a real possibility.  But then we made it into space, and the ride smoothed out.  Finally we were moving around our ship on our own, with Houston helping with navigation but leaving us on our own more and more until we can accomplish our mission and come home!  But no one ever used that analogy, so maybe that is wishful thinking... but hopefully we'll learn there was something easily remedied causing her heart to race and there is nothing to fear!

And now, check out these beauties!

 Grayson's obligatory 7 week photo

 He looks a little concerned...

 I like his shirt!

 Scarlett's obligatory 7 week photo

 She looks happy!

I think she is thinking, "OK dad, take this picture so I can get some food in my belly!"

Through with it Thursday

If you are not following us on Facebook, I apologize for the lack of updates.  Tuesday and Wednesday were "business as usual" except that we were at the hospital until after midnight both days to make sure we held our babies for 3 hours while fitting in other obligations.  We gave brief updates on FB and I promised to post today.

Well luckily for me, I have something to report on!  This morning we received a call from Grayson's nurse to give us a heads up that he switched to a CPAP over night.  This was the next step for him and he made the transition successfully.  Our 3.7 pound stud muffin is 1 step closer to going home!

And if that was our only praise today, we would be 2 happy parents.  But wait, there is more!

Both our kids have been running warm temperatures in their environment.  I think they take after me that way.  They are not feverish but their bodies don't need the help from the isolettes that would be expected of babies their size.  For example, Grayson's isolette was set at its lowest heat setting, 26.2 degrees Celsius.  When he was swaddled without clothes, he was registering a temperature of 37.4, which is at the very high end of where they want to see the kids.  Ideally they are closer to 36.8.

So they made the decision today to graduate Scarlett to a crib!  A crib!  A CRIB!!!!!  She is probably a little more than 100 grams under the typical bench mark but gets her "hot bloodedness" from me, so she moved up early!

And if those were the only blessings, we would be beaming ear to ear.  But wait, there's more!

Scarlett spent some time at 21% oxygen while kangarooing and then spent her 9pm care without support for 30 minutes!

And as giddy as we are about that, there is still more!!!

Tonight, for the first time, our kids are sharing a nurse!  1 nurse for my 2 children!  This is a sign that the nursing staff finally feels that the workload of my 2 babies would not overwhelm one nurse.  Up until now, they would assign us two nurses and have them both paired with another child who is only working on feeding because our kids had too great of a risk that something could come up.

To make that even better, the single nurse we had is one of our favorites.  Kelsey has been with us since the beginning and has been Scarlett's primary.  From what I can tell, she is a top notch medical professional but she also understands that she has to "nurse" the parents from time to time.  Most of the decorations we have were created by her.  Her love for my babies is obvious and we are grateful to have her share in this milestone!

Grayson gets 1 photo tonight.  He is not happy in any of the others:

Scarlett in her crib:

Goodbye Isolette!

32 Weeks

Another good day today!  The twins hit the 32 week gestational mark.  At this milestone, they start doing "Cycled Lighting."  They leave the lights on between 8am and 8pm so the twins will start to understand day and night.  They will keep the blankets over the isolettes to keep the light out of their eyes.

Speaking of eyes, they had their first eye exam today.  Preemies are at risk for ROP which is abnormal blood vessel development in the retina.  Their exams showed their eyes are still too premature to know if they have it so they will try it again in 2 weeks.

Otherwise no big news.  We held both kids.  I was able to swaddle hold both (not together) and kangaroo Grayson.  Trish kangarooed Scarlett.

Editor's note:
I have heard a few people have tried/wanted to comment but ran into issues.  If you don't have a Google account (or another option on the dropdown menu, feel free to choose Anonymous.  This way you won't be taken to a log-in page.  In my paranoia, I might even copy/paste the comment somewhere else before I click post in case there is some other error.

And now for the pictures you're here for!
Grayson:

 When we left.

 During Kanagaroo time.

 This morning.

Scarlett:

 This morning.

 During Kangaroo time.

 Getting her "care" time.  The nurse is checking her skull to make sure its not shifting due to the mask.

 This is an outfit passed down from Grant's (another NICU baby) parents who received it from a NICU graduate who received it from another NICU graduate.  We hope the good fortune continues!  Plus it is gender neutral, but we ran out of the clothes we had at the NICU for her so she gets to wear it first.

Whats in a name?

Thankfully we had a pretty slow day today.  The newsworthy events were:
1) We decided to start doing "Gavage Feedings" with Scarlett again.  They put the food in a syringe on the end of her feeding tube and let gravity control the flow.  This is the standard way they feed babies this young (gestationally) but she was struggling with keeping her oxygen saturation towards the end of her feedings.  For the past couple weeks her syringe was on a pump to control the flow.  She started at 1 hour, then 45 minutes, then 30.  Today she moved back to gavage and did well!
2) I swaddle held Grayson for the first time!

3) Scarlett was down to 21% oxygen for some time today!  That is the percentage of oxygen in the air we breathe.  I believe the twins were at or around 21% their first weekend which many NICU nurses refer to as the "Honeymoon" because babies can act reasonably healthy before the act of surviving starts wearing them down.  Our babies fell in that category so 44 days later we are are ecstatic to be at 21% even if it is only for a brief period of time.

So on a slow news day, we have to pull out our B roll.  Trish and I wanted to share how we came up with the names.  For some of you, it may be pretty obvious, but we wanted to add some commentary.  Trish and I graduated from The Ohio State University.  More importantly, we met there.  Trish's parents were high school sweethearts and went to OSU together, and raised her to live, breathe, eat and sleep the Buckeyes.  I grew up a military brat, moving around a lot, but once I arrived in Columbus I knew I found a home.

Trish and I ended up sharing a group of friends.  Her sophomore year (I was deployed that year) she roomed with one of my good friends.  When I came home, I kept hearing about her.  A lot of:

Random friend: "Remember when we all went to so-and-so's party and such and such happened?"
Me: "No, was that last year?"
Friend: "I don't remember.  I thought it was you, me, Trish, and so-and-so."

So after a couple months of that, I decided I needed to meet her.  1 Halloween party later, I was crazy about her and knew I could convince her to like me too ;-)

So fast forward past our graduation, wedding, etc until about 6 or 7 years ago.  I came home from work excited to share an idea with Trish.  I think she was relieved to learn it was not an idea for a product, service, or some other business that was going to make you rich!  (I get to spend a lot of time in my car traveling to client meetings and can't help but think of many things that I am sure would make me a millionaire if I ever had a chance to go on Shark Tank!)

So I asked her, if we ever have Boy/Girl twins, can we name them Scarlett and Grayson?  Trish said she liked those names individually.  At the time, I am sure she was thinking "What are the odds???"  We weren't actually naming them Scarlet and Gray, right?  (She had shot down Woodrow, Hayes, Tressel, Urban, Ezekiel, Elliot, Braxton, etc.)

Fast forward again until this fall.  We find out we are pregnant (yay!) with twins (rut roh!) and then learn we are having one of each (yippee!)!  We have the conversation, are we going to be THOSE people?  I say yes!  Trish says "Let's keep our minds open."  However we only had 6 weeks from the time we learned the sexes until Trish was admitted to the hospital.  Do you know hard it is to decide on 2 names that we both like, that go well together, for a boy and a girl?  We knew we didn't want names that rhymed or sounded too similar (such as Hayden and Hadley), so we had alternate boy names and alternate girl names but nothing that we could settle on for both.  So once they were born, it became the moment of truth, especially a couple days later when filling out the paperwork to be discharged from the hospital.  So one of my theories is they heard some of the names we were contemplating, and decided they needed to get out here before we changed the names they wanted ;-)

 Grayson when we left

 Scarlett when we left