1 year corrected

We tried to get outdoor pictures of the twins but it was the first time they were exposed to wind and didn't go over well.  

First Birthday Party

My last post was on the eve of their first birthday.  Feb 9th was their due date anniversary, 3 months and 8 days later.  At this point, it is easy to say they were born at 25+5 without thinking so sometimes its nice to recognize how much time those 100 days really are.

I would love to say that I intended to be silent that entire time, that I have an artistic flair with that much patience and forethought.  The truth is, 2 other blog posts exist in my account as drafts that were written since my last post.  1 was summarizing their birthday party we had a couple weeks after my last post, and the other was written in December but had news I wasn't quite ready to admit out loud.  And then, it was mid January and I thought, "Hmmm...  Maybe people have moved on, knowing how hard it is to raise baby twins and not waiting for an update from these tired parents."  But I know how many people love these two and even if they aren't on the edge of their seat, I want to share.  So, here goes.

Both kids are generally happy babies with big smiles.  Scarlett doesn't make you work as hard for hers, and her eyes squint into the cutest little face when she's happy!  They also both wave on command.  Scarlett's is more hand-waving side to side while Grayson throws his arm out straight and lifts it up and down.  They are very aware of each other now, occasionally holding hands in the high chair and playing "Chase" inside their play area.  Grayson will often crawl over to her while she is laying down and use her body to lift himself higher in the air.  Scarlett is typically fine with it unless he catches her in a sensitive area.  She gets her payback when he goes near her legs as she likes to throw them around.  She has "caught" me when I try to walk past her by throwing her legs around mine then locking them around it.  With her brother, its typically more like an upside down donkey kick!

Now that both kids sit up well, we've started giving them a bath together in a real tub.

We were able to get Occupational Therapy for both twins through Help Me Grow.  Due to budget, each kid will have a session every other week, but it is at the same time slot to help with scheduling.  Where our Physical Therapists focus on gross motor skills such as crawling and climbing (and eventually walking), the OT can focus on issues like feeding, having the kids hold their own bottle/spoon, etc.  We were on a wait list for 3 months for Scarlett to get in OT for feeding issues, but she had her evaluation today and they decided she won't need them.  She has FINALLY started to eat better.  She likes thicker food like banana slices or level 3 baby food, which is atypical, but once we figured it out she has become much easier to feed.  Something also seemed to click so we don't need to fight quite as hard to feed her bottles either.

Scarlett is finally doing some army crawling.  As of this weekend, she has learned to pull herself up.  With her low muscle tone, this is an extremely difficult skill,  but we saw it on Friday (with assistance) and Trish witnessed it today (unassisted!!!!)    She is 18 pounds, 9 ounces (less than third percentile) and 30 inches long (37th percentile!).  She had a bottom tooth pop up over the weekend to give her a total of 5 with 2 on top.

Grayson is crawling like a maniac and starting to get his knees under him some (vs. army crawling).  He is regularly climbing over anything he can, and pulling himself up on our couches and the baby gate.  He is 20 pounds, 11 ounces (fifth percentile) and 29.75" (12th percentile).  Some of the 12 month items will fit while others make him look like that guy who wears t-shirts that are 2 sizes too small so you know that he works out.  He now has 8 teeth, 4 on bottom and 4 on top.  The amount of drool that comes out of him must mean the other 24 are right around the corner!

But the whole truth is, we are working our butts off for those results and have some concerns about their development.  At our 1 year check-up with the Nationwide Children's BPD Clinic (The unit with specialized doctors focused on their lung development and used to treating children with complicated starts), the doctor asked us about Grayson's use of his left arm and leg.  She asked if anyone had ever mentioned Cerebral Palsy to us.  Of course, CP has been a real possibility.  Premature, brain bleeds (especially significant ones like he had), and BPD are all risk factors for CP.  I still vividly remember the conversation with a doctor who asked if I remember the previous conversation about developmental difficulties being a possibility, and changing the expectation that they are a probability.  But our miracles defied many odds, and I thought hoped prayed that that conversation could be something in a speech around a graduation or wedding about beating odds.

So there we were, with a doctor who has grown close to us, gravely asking if we knew that was a possibility.  She wasn't going to diagnose him yet, but did officially tag him with "upper and lower body asymmetry."  CP is a condition where brain damage impacts the ability to move.  This is a gross oversimplification, but it is manifested in many ways.  For example, the worry that we have (at this moment) is that Grayson won't ever be able to utilize his left side fully.  Almost like someone who suffered a stroke, he could struggle using his left arm/hand and leg/foot.  Obviously this would impact his ability to walk, but even as an adult it might limit his ability to type or operate machinery that requires both hands.

The good news is the timing of the observation coincided with a joint study between Ohio State and Nationwide Children's.  (PS, If you click on that link, you might see a cutie pie that you know in the picture and at 1:19 and 7:16 in the video!)  Grayson was able to get in as the 3rd participant (and Scarlett was the 2nd control candidate).  We spent 6 weeks where we basically had Grayson's right arm in an oven mitt, forcing him to use his left arm for 6 hours/day.  On top of that, we did some specific therapy with him in his high chair twice/day making him reach and grasp with his left hand.  I am happy to report, that today it would be hard for an amateur to observe him and see any signs of deficiency.

First Christmas at home

Helping set up the tree:

Trying for a Christmas card:

Visiting Santa:

Visiting Santa was really neat.  The Neonatal Advisory Council put on a "Clean Santa" program for those of us that were recently discharged from the NICU.  We were in a private setting and "checked in" and then went into a spacious room where we could keep as much distance as we wanted from other children.  Then they called us over for the pictures and we could have been as close/far away from Santa as we felt comfortable with.  It makes these token moments possible for 2 children that are so immuno-compromised that the insurance company is willing to pay for Synagis.  I've been told how expensive it is (ranging from $2-5k) so I just logged in and checked to see what our actual claims are.  I almost can't believe it myself, but the claims are $8,455.12/month/kid for 5 months.  This is one of the things that infuriates me about our health care.  The medicine needs to stay cold the whole time it exists so I can see there being  high cost for it, plus the fact it needs to be overnighted and packed in a cooler box, but $84,550/year for the twins is outrageous.

Christmas morning:

Grayson has been watching too much coverage of the primary races!

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!