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!