One Year's Eve

This is a spontaneous post because I wanted to share pictures...

Have you ever seen a cuter Mickey and Minnie?  Me neither! 

 but we do have a few items to update:

The helmets are done!  We saw the Orthotist last week who told us they had outgrown their existing helmets.  He measured their heads and said that neither was perfect but he did not think they needed helmets anymore!

Before:

 After:

Scarlett's first tooth finally popped through!  It was her bottom front-right and it looks like the front-left is not too far behind.

For those that follow us on Facebook, you know we are currently battling sickness in our house.  Grayson spent the last 2 nights on oxygen but seems to be doing better, so we will continue to monitor him but hope he is on his way back to health.  Scarlett has a runny nose too but her lungs are stronger so we aren't as worried about her.  She is fighting a lot when it comes to eating, which isn't new but was much better.  I think it is mostly because she can't breath through her nose very well so she doesn't want her mouth blocked off.  Trish did go to the doctor yesterday and was given antibiotics so hopefully she will heal soon, but is going on a week with this cold.

We received a score from their physical therapist and they both tested within the normal range for their adjusted ages!  This means they are showing the same abilities they would be expected to have if they were born near their due date.  Our goal over the next year is to catch them up to their actual age.

Pics from today (Halloween) followed by pictures from "Beggar's Night" on Thursday.  We dressed up long enough to meet a couple neighbors and get these pictures.

*Side note, today is our last "First" Holiday.  But we might cheat a little and celebrate our first Thanksgiving, Christmas, and New Year's AT HOME.

This is a regular expression from Grayson.  Not kidding!

"Dad, he's touching me!"

"Fine!  If you won't do anything about it, I'll move myself."  I told you I wasn't kidding about his expression...

"Do you believe me now?"

Except when we get a dimpled grin on camera from Scarlett.  Then, he is mildly amused...

Trish was inside on her own while I was handing out candy, so we didn't have as many props to get them to smile.  Plus I think Grayson didn't like his hands covered up. 

 "Ah, there's the smile!"

"Um, did you know you had mouse ears on?"

"Look who's talking!" 

"Mom, do you see this?  She has another set of ears on her head!  And I think they are from a mouse!!!" 

"Don't worry sissy, I still love you!"

10-11 months

Wow, the time flies!  I know I sound like a broken record lately, but accomplishing ANYTHING takes at least 4 times longer now-a-days!  

On the topic of time flying.... reminiscing is a bitter-sweet experience right now.  A little over 1 year ago, we discovered our twins would be boy/girl!  We had a gender reveal party using cupcakes.  I took one large bite of mine and my heart did a somersault as I discovered pink icing.  Secretly I wanted a "Daddy's girl" but I was (and still am) terrified about what this world does to girls.  The "fashion," objectification of, and cattiness.....  And then there is puberty.....  I will never be ready for that!  Anyway, I watched Trish as she took another tiny nibble, and then another one...  I almost leaned over to bite it but I was worried I would get her finger too.  Finally, she revealed BLUE!  Thank you God!  I had prayed that I would be happy as long as they were healthy (boy was I ignorant!) but I felt I couldn't handle twin girls.  I would have been outnumbered.  Plus a daughter is great, especially if she has a brute of a brother beside her on her dates!

UPDATES:

Grayson weighed 19.62 pounds and was between 26.8 and 28.1 inches long on 10/7.  I saw between because the hospital entered 28.1 in their system on 9/17 while the clinic said 26.8 on 10/7.  Length is hard to measure on babies because so much depends on their cooperation in stretching and whether the nurse has a helper to hold their head...  Scarlett was 16.64 pounds and was 26.8 inches long.

Most of you know that Grayson caught a virus and it put him back into Nationwide Children's Hospital for 5 days.  He has recovered and is back to normal but needed to be back on oxygen which was mostly while sleeping.  He had been off oxygen for about 1.5 months before getting sick. As of 10/7 he came off of oxygen and has been sating above 95% day and night.

Sleep

The twins are still sleeping great at night, but during the day they don’t ever seem to nap at the same time, so one or both almost always require some sort of interactions.  When there is a peaceful moment, we have been focused on unpacking and settling into the new house, which is challenging enough!

In the past month, Grayson has stayed off Oxygen 100%!  We still have a monitor on him at night to be safe.

Sitting
We aren't crawling yet.  Both twins can role over but Scarlett is more likely to, and mostly only when her helmet is off.  She does manage to "spin" a 180 almost every single night, as her head is at the foot of the bassinet when we retrieve her.  When Grayson is laying on his back, he has about as much chance of rolling over as a turtle in the same position, but when he is doing tummy time he can roll onto his side and back pretty easily.

Standing
Grayson LOVES to stand.  You put his feet flat on a surface and he gets the largest grin you have ever seen.  It's not the most developmentally appropriate activity so we aren't supposed to encourage it, but it comes in very handy when he is upset.  Scarlett wants no part in standing.  If you try to set her feet on the ground they withdraw so quickly you would think it was boiling water you were trying to dip her into!  However we are getting instructed by our Physical Therapists to avoid standing.  I guess one of the reasons are we want them to move on their own, and us giving Grayson that enjoyment encourages him to rely on us.

Crawling
We are not crawling yet, but Grayson is close to army crawling.

Helmets

We painted their helmets!  The talented Aunt Becca was in town from LA and decided to help us out.  We used regular acrylic paint from Jo-Ann's and Trish and Becca "free-handed" all of the paint.  We tried to use tape to make the lines crisp but it wouldn't cooperate very well with the round surface.  The Buckeye leaves are stickers.  If you are not familiar with Ohio State football, they have a tradition where players "earn" Buckeye leaf stickers for accomplishments on the field.  We decided the twins earned their leaves for each week in the NICU, so Scarlett has 18 and Grayson has 19.  After the paint and stickers, we used modge podge.  Our only complaint is the cleaning solution we use daily seems to take the whole finish off.  Trish cleans the inside daily so as hard as she tries, it is difficult to keep them looking pristine.  They HAVE to be cleaned daily, because as cute as they look, these guys sweat and they start to smell like feet!

We have gone into public a few times, and the reactions are very mixed.  We spent Labor Day weekend in Marietta, OH, and went out to eat a couple times.  I don't think many people in that Ohio/West Virginia river-town area have seen Plagiocephally (head-shape) helmets, so the assumption (based on the facial expressions) was that we were crazy, Buckeye loving hillbillies who were torturing their kids.  One person did ask about them about 10 mins after he walked by shaking his head.  I was pretty upset at him from his first pass-by and should have been more gracious:

Stranger: "Where did you get them helmets?"
Me: "The Orthotics Center..."
awkward pause...  silence...  painful silence...
Me: "They are medical helmets.  These guys were born 3 months early and spent a long time in the hospital.  These helmets are custom made to fix the flat spots they have from laying in hospital beds."
Stranger: "Oh, them are medical helmets.  OK."

I think I would prefer to have the conversation than the silent judgement so I feel bad about being a jerk.  I will try to be much nicer next time...

The helmets are working great!  They give them a rating based on how asymmetrical their head is.  0 would be perfectly round and less than 3.5 is considered within normal limits.

Scarlett started at a 19 but at her last checkup was at 10!  The Orthotist said the amount of correction she had in her first 3 weeks typically takes 3 months!!!  Because she started with such severe flat spots, we don't expect to get under 3.5 and are hoping to get to around a 5.  The Physical Therapist we use has noticed her ear has "moved" quite a bit and at this point most people would probably not realize there were issues unless it was pointed out or their job was in this space.

Grayson started at an 8 and was a 4/5 at the last checkup.  Because he was less severe when he started, his goal is to get under 3.5.  Grayson's head is now round enough that he would not have warranted a helmet even if we wanted one.  We can still wear it to try and get to "perfect."  Plus, now that he is moving around it will help us prevent some bumps and bruises!

Teeth
Grayson has his two front-bottom teeth and his upper left.  Scarlett's teeth haven't made an appearance yet. I should have announced Grayson's first tooth last update... sorry!  I do wonder if his teeth have anything to do with the fact he is eating baby food almost daily now.  Does the body say, hmm, this soft flavorful stuff is mushed up fruits and vegetables.  I better get ready for some real stuff?!  There is probably a study on this already, but I wouldn't be shocked by anything the body is capable of now.

8-9 months

So they were totally holding hands, looking at each other and smiling.  I sprint to grab the camera and rush in... Just in time for them to let go.  This picture is about half as cute, but 15 minutes later they locked arms.

Sorry.  I have slacked off on my responsibilities of updating the twin's adoring fans.  I apologize.  There is a twin dad that blogs that I was reading before all this.  He had a recent post about how to "break out of survival mode."  I haven't had time to read it yet but the headline does call out to me.  Since my last update, we have had some major updates.  One of the updates is we bought a new house and moved.  Well, moved MOST of our stuff.  We were fortunate enough to have a month of overlap in the 2 houses so I can bring a carload home every day.  Getting our old house listed was a chore.  I like to DIY because of the cost and quality of work.  During that past 2 months, Trish proved how amazing she is by single parenting much of that time so I could act like a carpenter/handyman/mover in both houses.

Anyway, shortly after our last post, Scarlett became oxygen free!  She has not needed oxygen for about 6 weeks now and shouldn't need it except if she gets very sick.  We even received the go-ahead to stop using her pulse-ox overnight, so we have a completely wireless baby!  As of yesterday she was 14 pounds 6.4 ounces and 25 inches.  She is finally registering on the chart for weight, and is almost on it for height (technically she is 0.68th percentile) but her adjusted age puts her much closer to the 30th percentile.  The doctors only care about the curve (maybe that statistics course wasn't a waste after all!), and not about the ranking, and are pretty happy with her results.  Her head circumference of 42.2 cm is the 15th percentile in actual age, but we also don't know how accurate the measurement is because her head shape is not good.  All of the days she spent on the oscillator were days that her head could not be rotated to allow for it to shape naturally.

Both kids now have helmets to correct their Plagiocephaly or flat head syndrom.  This is purely cosmetic, but we have until around 12 months corrected to get it under control because at that point the bones start to fuse together and are less malleable.  They will wear the helmet 23 hours/day every day until the doctor is satisfied with her head shape.  Scarlett's head shape is more severe due to the time she spent on the high frequency oscillator in the hospital.  The nurses and Occupational Therapist do a great job rotating the babies but that machine has very rigid tubing and works in a different way, so most of the time they left her where she was during those weeks.

"Ehh, I am not too sure about this daddy...  People will think I am a boy with this hat on!"

Grayson has been oxygen free during days for about a month now!  He does get his oxygen at night.  He may be slightly taller than his sister at 25.3 inches but it is tough to get true measurements on babies.  He did weigh in at a whopping 16.42 pounds, which is not actually on the chart for his actual age but is in the 7th percentile!  He would be right at the 50th percentile using his adjusted age.  Of course this means his weight for length is in the 72nd percentile, so we may be growing a future Ohio State fullback!

The dietitian cleared Grayson to try real (baby) food!!!!  It is amazing to me that "well-baby" parents make all of these decisions for themselves while we have specialists dedicated for any and everything, but that is another topic.  The dietitian wanted him to be able to sit up on his own, able to support his own head and then want our food and seem interested in using his tongue.  So far, he has tried squash, green beans, and carrots.  The only time he seemed to really eat, was the most recent attempt with carrots.  With the other foods, more came out of his mouth than down his throat!

"Green beans are fun to play with but I am getting hungry.  Can we eat soon???"

"Oh I get it!  You swallow it.  Mmmmm, that's good!"

The only other update I can think of are their eyes.  Their follow up last week went pretty well.  We are not worried about ROP anymore!  They are going to see them again in 3 months to confirm as well as check on Scarlett's eye crossing.  They have improved over the past 3 months, but still cross when she is focusing on things nearby.

If you are following along in the blog, thinking that I don't send enough updates:
1) I am sorry!
2) Follow me on Facebook: https://www.facebook.com/BuckeyeTwinDad

Our 8 month photo shoot was in the "Buckeye Pod" made by our "aunt" Colleen.  Although we never smiled at the same time, we love it because we look SO adorable!

 Brothers!

2 steps forward

Wow, it has been a month since our last post.  I wouldn't believe that if I didn't see it with my own eyes.

Most of the delay was because of logistics.  "Free time" is non-existent and we've made changes that we needed to wait-and-see about.  Another barrier was more of a mental one.  The past month has been hard.  It is a completely different "hard" than sitting next to a plastic box hoping your baby fights hard enough to make it another day, so how can I complain?  Our difficulties are more of annoyances now and probably experienced by every person who has 2 young children.  However, I have been "real" on here to date, so I will share our updates with you.  Tone is hard to read so this is more of a "please get me another cup of coffee while you are up" kind of tone than a "Woe is me, my life is so terrible."  We love our life right now.  We are just very tired.  And we are barely keeping bottles washed much less the rest of our chores.

The twins loved on momma for their first Mother's Day:

We did have a chance to visit the real Zoo with our triplet friends.  It was a blast.

Updates:

Oxygen

Since our last post, we had a couple changes with oxygen.  For 2 weeks, Scarlett went without oxygen during the day.  Unfortunately, we had to put her back on a constant flow of 0.2 ml this week.  This was a little heartbreaking, but we would rather deal with the inconvenience than the health issues that come from her not having enough oxygen.  We have now tried to wean Grayson 2 months in a row without success.  The best case scenario for him is to be at room air by the end of July but I am not very optimistic.  On a related note, Grayson has decided that the nasal cannula is his favorite "handlebar" when he is upset, which at a minimum is about every 2.5 hours when he is hungry.  He either grabs the cannula where it goes into his nostrils while he is trying to put a non-existent pacifier in his mouth, or he reaches up with one or both hands and grabs it near his cheeks and rips it off.  Several times we have slipped away while they were sleeping and came back to him wearing his nasal cannula like a necklace.

We are no longer using apnea monitors which had adhesive pads under the armpits.  I am thankful because they were not very sticky so we would reinforce them with tape which really hurt their skin.  I asked our medical supplier, Good Night Medical, for "Lead Belts" that would have helped this issue but they can't even deliver oxygen when needed.  When they collected the monitors they said they finally arrived the day before, but I don't trust a single word from them.

We are now using Pulse Oximeters with sensors on the bottom of their feet held in place by an adhesive band and a piece of velcro.  This is much better for their skin, but can give off inaccurate readings whenever they kick or move their foot.  Therefore we can only use them when they are sleeping.  For the most part, we leave the lead on most of the time, and only turn on the machine (and possibly plug the lead into the machine) when they are asleep.

Feeding

I love my daughter an incredible amount, but bottle feeding is a NIGHTMARE.  She will cry because she is hungry, suck on her fingers, but then reject the bottle nipple.  We have spent the last couple days trying new nipples without success.  Most feeds take about 45 minutes of fight before she eats for 15.  Too often, she is so tired from fighting that she falls asleep.

In her last BPD checkup, she was not growing at a rate we felt comfortable with and one of the issues may have been that her tongue was getting fatigued because she was "tongue tied."  This is where the tissue that connects the tongue to the mouth won't allow the tongue to move around very much.  We took her to an ENT where they simply cut the tissue further back with scissors.  She did not notice until later when the pain medication wore off, but her bleeding mouth broke my heart.  She has started breastfeeding longer, so I believe it was the right move.  But she needs additional calories and needs at least 2-3 bottles each day.

Grayson would literally eat every waking second if he could.  He wakes up like clockwork to make sure he gets his meal.  In our last check-up, he was in the 97th percentile for weight-to-height.  I would love that if he were taller, but his weight is around the 50th percentile while his height is less than the tenth percentile.

Temperament:

I always get smiles on demand from Grayson.  Sometimes even when he is screaming his head off that he is hungry!  Scarlett is a little more selective with her smiles but will usually reward mom and dad if they try hard enough.  Otherwise she is pretty straight faced.  She is pretty quiet while brother babbles.

Grayson LOVES his pacifier.  Scarlett LOVES to grab things.  She will grab her toes and pull them to her feet.  This has been a little problematic for the pulse-ox probe on her feet.  We are expected to use them for 3-5 days and hers seem to last about 20 hours.

Physical Therapy:

We have private physical therapy visiting the house weekly and have officially been admitted into the Help Me Grow program.  Grayson may have some issues the PT is working with, but because they are inconsistent, we aren't 100% sure what is a true issue and not an attitude and/or other issue.  For example, this week he showed signs consistent with left torticollis, but last week showed consistent signs of right torticollis.  This could be because his neck muscles are tired, or could have something to do with his vision, or could be because he was being a brat one or both days.

Scarlett will be getting a "headshape helmet" soon because of flattened spots on her head from laying in a certain spot too long while in the NICU.  We were hoping her head would "pop" back out on its own, but it hasn't yet.  We have some concern that this will put extra weight on her neck and set us back when it comes to her torticollis, but we only have about 7-8 more months before her cranial bones should set and fuse together.  Additionally, there is some evidence that using the helmet earlier leads to a decreased overall duration.

I have to admit that I am pretty nervous about the helmet.  It needs to be worn 23 hours/day.  As we have ventured into public we have mostly been in hospital or friendly scenarios (eg. church).  Most of the people we are with have some idea of what the babies have gone through, and most of the strangers look past the clear oxygen tubing.  But you can't look past the helmet.  If you do a google image search, some people decorate the helmet with a cute "Under Construction" theme.  Others make it cute and some people make it look like a pilot's helmet.  But regardless of how its decorated, this is a giant billboard saying "Come pay attention to me because I'm different."  I KNOW that it doesn't matter and that she won't remember these days.  But I'm also dreading the days for us that feel especially challenging, when someone who has no idea what is going on (not their fault either!) asks a question that probes too much and breaks my heart.  For example, the question, "Will they be OK?" or variations have been asked so many times that I am callous enough to say "So far things are very age appropriate, so we hope so," without the question registering.  But at night, when I go to bed by myself because the oxygen machines keep the babies downstairs and Trish needs to be there so she can breastfeed in the night, I lay down and my head starts racing.  Will they be ok?  Is something wrong with Scarlett because she's not babbling as much as Grayson?  Is something wrong with Grayson because he sticks his tongue out?  What will people say when they see Scarlett wearing a helmet?  Why is this stage so mentally demanding?  Why doesn't Scarlett want to eat a bottle?  What if she isn't eating enough and doesn't grow?  Is Grayson eating too much?  Is his weight the reason that his breathing/wheezing often resembles someone who just ran a race?  Why am I so tired but can't sleep?

I have spent most of the past month trying to meditate on a couple verses:

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. - Philippians 4:6-7

 Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing?  Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life. - Matthew 6:25-27 

Prayer Requests:

Please pray that the twins grow.  Their lungs especially, but also everything else.

Please pray for us as parents.  That God provides patience, wisdom, and grace and that we don't botch anything up too badly.

Half Birthday

Wow!  6 months!  I never thought that getting here would feel like an accomplishment, but then again, I never imagined having micro-preemies.  At this point, we are noticing the kids have very different personalities.  Grayson is extremely social.  He returns your smile when you smile at him and stares in your eyes with his big beautiful blue eyes.  He eats.  Boy does he EAT!  The kids are now ad-lib so they can eat as much as they want as often as they want.  Grayson typically downs about 4-5 ounces every 2-3 hours but does a decent job of sleeping through one of those feed times at night.  He lets you know that he is ready to eat by screaming!  In those times that he is awake and not "hangry" he might babble for you!

Blowing bubbles.

Scarlett is much more quiet and will let you know she is hungry by opening her mouth really wide, or munching on her hands.  If you still don't get it, she will let out a quiet whine.  She is almost exclusively breastfeeding but when she does take a bottle she typically takes about 3 ounces.  We think she is teething because she will chew on her Sophie, bottle nipple, fingers etc.  She doesn't give a whole lot of eye contact, but does babble some.  A surefire way to get a smile out of her is a "smooching" sound by kissing her on the cheek.  She has a special bond with her daddy that mommy is a little jealous of.  She will find me when I start speaking and will track me as I move around the room.  She doesn't seem to do that with the Physical Therapist who visits every week or for mommy.  I think its because my voice booms, something that did not work for my favor in grade school.  Mommy thinks it might be because she gets used to her voice during the day.  She does enjoy sitting in bouncers and kicking her feet.  She also LOVES looking at the ceiling fan and bright lights (windows, tvs, etc.)

We do need to thank many people for helping us get here.  We know that without the support of so many of you this journey could have been significantly harder.  From the people who were paid to help us (although based on the service we experienced most of these people are underpaid!): doctors, nurses, respiratory therapists, occupational therapists, physical therapists, social workers, psychologists, case managers and... , to our friends, both new and old, to our family.  Thank you.  THANK you.  THANK YOU!  Trish is working on Thank You cards so if you haven't seen one yet, know that we are especially grateful and are working to get you a card saying that!

You provided food when it was tough for us to find time to eat.  You lifted our spirits with flowers, cards, and gifts.  You made and bought clothes and toys for the twins.  You sent texts and facebook messages comforting to us, rejoicing and lamenting with us.  You donated to March of Dimes and supported our walk by walking with us and/or eating with us at City BBQ.  And most of all, you prayed with us and for us.  Many of you have never met us, and some of you may never have the chance to hold our babies.  This is the 80th post and below are stats showing where the readers come from and how many times the page has been viewed.

Entry	Pageviews
United States	109872
Australia	1312
Canada	198
France	115
Russia	76
United Kingdom	64
South Korea	64
Estonia	58
Germany	45
Mexico	42

When I look at this, I am baffled.  I pour my heart into these posts but I know I am not JK Rowling, Steven King, or Nicholas Sparks.  I guess that most of my audience is within 3 degrees of connection and heard about the situation and read to see how our million dollar babies are doing (currently at $3.4M, but who is counting other than the people negotiating next year's insurance plan???).  I cannot explain how humbled I am to know that so many people are witnessing God's work first and second hand.  So THANK YOU!

Updates:

So the past 2 weeks have been eventful.  We made it to the aforementioned fundraiser where our team raised almost $200 for March of Dimes!  Then we did the March for Babies in Columbus.

All of our walkers with a couple nurses from Riverside! 

We finished!  

From left to right: The Shea family (Tim, Trish, Ethan, Grayson, and Scarlett),  Cindy and Gabriella Frey.  The Richards family (Matt, Shana, and Grant), the other half of the Frey family: (Pat, Dominic, and Cameron).

I was very thankful our first two outings were with fellow NICU parents because the extra eyes are helpful.  One of the kid's oxygen hose popped off the tank early on and another dad was able to point it out.  It's scary and embarrassing, but if you've been in this situation its probably happened to you.

I think I mentioned we were trying to wean oxygen in my last post.  Both kids moved down to a flow of 0.1 liters/minute.  Scarlett looks like she'll be ready for room air by the end of the month, but we had to increase Grayson back to 0.3.  He was always tired and once he started sleeping through feeds we knew something was wrong.

The last 2 weeks have had several alarms on their apnea monitors.  We think Scarlett's resting heart rate might be near the alarm rate.  We will know for sure when we go to the BPD clinic but we had her hooked up to a Pulse-Ox a couple times the alarm went off and her saturation was at 100 so we aren't too concerned.

Grayson has had several alarms for his respiratory rate being too low.  Medical professionals suggest that babies sleep on their back, on a firm surface, by themselves.  So when we called and explained he has had many of these alarms in the momaRoo, they chastised Trish for letting him sleep in the chair.  But while they are on monitors, I don't know that we can afford to take them out of these chairs when they fall asleep.  They only stay asleep in the bassinets when they are swaddled, and so we typically only do this at night.

For all of you saying "mom a who?"  It is this pod looking thing that moves side to side mimicking the way a mom would rock her baby. It can do a motions in the shapes of an M, W, U, opposite of U, infinity and has variable speed.  It can also play music if you plug in an iPad.  I think the newer models have Blue Tooth!!!

This past weekend we went on our first neighborhood walk and then made it to church!  It was so good to see many of our friends and meet people who have been praying for us that we hadn't met yet.

The best update is that cold and flu season has officially ended.  We would love for everyone to start meeting the kids.  Feel free to reach out if you would like to come by.  I recommend trying to plan a week or two out because we need to work around the the medical appointments.  For all the local SAHMs or non-first shifters, Trish would love to see you during the day so she can talk to an adult.  Of course, I would love to see you too, but reach out to get something scheduled.