Family Pictures

In lieu of a much needed updated...we had some family pictures taken recently.  The link to the gallery is below and the password to access is Richards.

http://rebeccakellerphotography.zenfolio.com/p1070087981

The New Normal

It has been a great couple of weeks since we brought Ben home from the hospital.  A hard, emotional, busy, exhausting, but great couple of weeks.  It turns out that it is easier to have the NICU raise your child than it is to do it yourself...a fact I think we failed to appreciate in our eagerness to get him home.  Not that we aren't thrilled to have Ben home...just would have been nice if we could have swapped out a screaming two year old or something.

First Day Home
Leaving the hospital was awesome.  Just getting him untethered from any sort of machinery was a great feeling, somehow made him more "ours" than "theirs."

Farewell UNC.  Thanks for all the hard work and wonderful care and attention...something tells me you won't forget to send the bill.

                    

Ben's Man Cave.  We aren't ready for Emmett to give up his 2 - 3 hour afternoon nap, so Ben will hang out in Mom and Dad's room for the time being. Actually, we ended up putting him in our bathroom.  Before you judge, I'd like to clarify that it is a pretty nice bathroom and the feeding tube really needs to be by a sink.

In the likely event that we don't get around to sending a birth announcement, I'd like to let you know this picture is definitely my vote.  Parker made him a hat, and he wasn't really in a position to protest.

                      



Parker was happy to have Ben home, but exercised a healthy amount of temperance, enough to make sure we knew he thought Ben was cool but not so cool that any of our attention should be diverted from Parker.  Emmett on the other hand thought he had just been given a new puppy and that it was all his, to do with it what he pleased, a puppy that wears red pants, of course.

Here are a couple of videos, they are a little long, but a fun memory of our first time all together as a family.  The only other time Emmett laughs like this, due to excitement, is when he is about to eat something with sugar, so Ben reached the upper echelon of Emmett's interest.

The G-Tube
Our feelings about the G-tube have gone from one end of the spectrum to the other.  There is really nothing better than feeding a baby without any hands.  That said, adding another hole to a baby's body, from which things can exit, is never a good idea.  That first day was pretty crazy, it felt like we were working in an ER every three hours biting caps off of syringes and running up and down stairs getting a tube, or a clamp or a syringe and pushing and pulling all sorts of liquids in and out of his new port.

"Is it clamped?" "Don't open that!" "How many ML's?" "Syringe please!" "Wait, the rate or the dose button?" "Maybe this button" "Seriously, can I get a syringe" "Don't press that button! Definitely not that one" "No, the other syringe" "Why are there so many syringes?"

Meanwhile the feeding machine is beeping and stomach contents are exiting because you forgot to do something the nurse warned you not to do.  It took a few days, but with my impenetrable ziplock system to organize the 12 different steps required to feed and give medicine to this child, we were pros.

                                        

The New Normal

Ben has assumed his position on the bouncy seat.  They kept him company for the first few days, but Ben has since been resigned to the corner of the room, where I am sure he is just hoping that someone is watching the occasional yelling child running past him to make sure he is not in harms way...no promises Ben.  The boys showed him all their cool stuff and made sure he was clear on where the "line" is on the couch that Emmett is not allowed to cross if Parker got there first.  And of course Ben had to check out the tree-house.

Now we are just trying to get back to normal.  The biggest impedance to this effort is certainly the doctors appointments.  The tally was 8 in the first week and 6 in the 2nd week.  There is one person to thank for making sure Ben got where he needed to be 14 times in two weeks and I am not him.  Emily has a new full-time job of finding doctors and therapists, coordinating appointments and figuring out where to send Parker and Emmett.  Luckily she is infinitely more popular than I am and we are blessed to have a lot of great friends that have stepped up and alleviated a very stressful situation.  That said, it was a hard couple of weeks.  Emily was stripped of the normal opportunity to bring a newborn home and just spend time with him and bond.  By the time Ben got home, all of our wonderful family that had been here to help had to leave and I had to go back to work.  Although Ben was a month old, having him home was like he was brand new to us.  Instead of cuddling all day with what felt like a 2 day old baby, she had to go to cart him around to multiple doctors offices  and rehash all the things he is facing and all the reasons he is not "normal."  Meanwhile Parker and Emmett took it upon themselves to redefine the "Melt Down" as the newness of Ben wore off and they went through their adjustment phase.

Amidst all of that, Ben is growing, developing and progressing each day.  "Normal" is starting to fight its way through all of the changes and there have been enough happy experiences to reassure us that all is well.  Parker and Emmett have certainly accepted things and are moving on.  

For Parker, this means butterfly and cricket catching.  I felt bad putting a nice big butterfly in jar with the cricket, so we built a butterfly cage:

  

Last weekend me and Parker and Emmett, met up with the Richards boy cousins and Grandpa for their first football game, BYU vs UVA.  Parker was more interested in the marching band than the football game, whereas Emmett was thoroughly engaged in the clapping, cheering and rah rah rah'ing.

We then spent some time on the Shenandoah National Park Skyline Drive . Ben and Emily enjoyed the weekend of silence and the alone time together. Looking forward, we are focusing on Ben's feeding therapy to help him with his feeding issues, but he is showing good signs of development in that area.  We have also been able to find a good physical therapist and look forward to less of the doctors appointments and more of these development-focused therapy appointments. For now we will keep enjoying our sweet little newborn, as we are constantly reminded how quickly they grow up. For the record, Emmett is cheating, we showed him his new planes underwear for when he starts using the potty, somehow he ended up getting his new underwear without any potty activity, and is wearing them on top of his diaper.

Leaving on a G-Tube, Don't know when I'll be back again

Ben will meet the Sun tomorrow...barring any issues or missteps in our parenting tonight, we should be released tomorrow.  The NICU requires the parents to spend the night with their baby prior to leaving.  He is still hooked up to monitors that the nurses can see from the other room...so we kind of feel like we are on trial, and worry we may fold under the pressure...we really want to go home tomorrow.

But what is it they say?  You can take the boy out of the hospital, but you can't take the hospital out of the boy...Our hospital/doctor days are not entirely over.  Our discharge is more like a work release, as Ben has doctors appointments scheduled for Monday, Tuesday and Wendesday of next week.

Ben had his surgery on Wednesday to get his G-tube put in.  The combination of recovering from the surgery and the length of time they had to wait to feed him, brought out a new side in Ben:

Besides some good, healthy crying, he really has been much more alert and is cueing to suck and eat much more.  We are sorry it took poking a hole in his stomach to do it, but it has been so much fun to have him be so awake.  He is also enjoying showing off his new "tape-free" face, and his new found binky skills.

It has been quite the month in our family, but as we have learned we will become accustomed to saying: We have ended up just where we wanted, it just took a little more time and effort than we expected.  

That's okay...if this is where we end up...bring it on:

Game Plan

We are three weeks in and we now have a game plan for coming home (insert exclamation of your choosing).   This is a good thing.  There is a hint of disappointment, but considering he is coming home, it is really, mostly, pretty much a good thing.  That said, have you seen how cute he is lately?  This is certainly, definitely, without a doubt, great news!

Ben has made very little progress on his ability to bottle feed.  The hope that it would "kick in" any day, or that it would all just "click," has not happened.  It now seems like the progress we were hoping for may be months down the road instead of days or weeks as everyone was expecting.  This is a bit disappointing as it is due to what seems to be a more severe case of hypotonia (low muscle tone) than is expected for an infant with Down syndrome.  If we were trying to predict the future this would suggest he may have a bit more work on the physical development side of things than other children with Down syndrome.  

One of the most effective coping mechanisms I have found, when confronted with the news Ben having Down syndrome, is to hope for the best, to assume he will beat all odds, and to expect that he will live as full and ordinary of a life as is possible.  Those things are all as much a reality and possibility as they have ever been, and certainly low muscle tone should be something that he can overcome with therapy, but we would have preferred he be leaving the NICU eating on his own and progressing as expected.  Nevertheless, he is leaving and that is what matters.  Assuming all goes according to plan we have one to two more weeks.  Ben will undergo a minor surgery this week to have a gastrostomy tube, A.K.A. G-Tube, put into his abdomen.  This is essentially a valve that is surgically implanted in his abdomen and lets us plug in a feeding tube, get right down to business, and deposit his food in his stomach with the help of an automatic pump.  It is a more permanent (albeit temporary) solution than the tube down the nose trick he has gotten used to.

Why we are excited, and why you should see about getting a G-tube for your next child:

Positive point #1, no more medical tape mustache for Ben.  We are excited to see what the lower right quadrant of his face looks like.

Positive point #2, at the doctors' recommendation, and much to our chagrin, the night time feedings can be programmed before bed time and can just run on a steady and sloooowwww drip all night long.   His new robot parent, the feeding tube pump machine, will do all the work.  Coupled with the fact that he doesn't seem to have the strength to open his eyes for more than 5 minutes at a time, I think we have dodged any sleepless nights in the short term.  I remind you this was the doctors recommendation and I shouldn't be judged for asking if I could rig two pumps together to maximize the length of the automated feeding time.  Its a fair question.

Positive point #3, Ben will be at home where he belongs.  The doctors are much more concerned with him being in a positive home environment and experiencing the normal developmental experiences at home than they are worried about his feeding.  The G-tube will make sure he gets the nutrients he needs and we will keep working with him to bottle feed, but the pressure is off a bit and we can spend so much more time with him.  It really should make for the most positive outcome possible.

Not to mention Parker and Emmett have about had it with their phantom brother.  Although Parker will sound reassuring, telling everyone that he has "overheard the doctors" saying that the only problem left is feeding and then Ben can come home.  Emmett, on the other hand, is pointing out all the babies he can find and with great disdain at their existence, is explaining that he wants Ben Home.  In case you don't get it the first time, Emmett will gladly repeat for the full 15 minute ride home from church..."I want Ben Home...I want Ben Home...I want Ben Home.

Speaking of Emmett:

Two Weeks

Two weeks old looks good on Ben.  

Not much progress on the feeding front.  We spend 30 minutes a day cheering on drops, dribbles and the evaporative effects of the NICU air.  Ben is averaging 2 to 5 ml from a bottle in a 30 minute session and the tube gives the next 50 ml.  Dad is more aggressive and at least forces 5 ml into his mouth (does it really matter that it falls back out?  I think not).  Mom is a bit more conservative and keeps it all in the bottle.   Aside from needing to get about 45 ml more from the bottle, we will need to repeat every three hours.  For now, there is just one feeding time a day he is waking up for enough to make any progress. 

Long story short...they are giving us estimates of 2 to 4 weeks until this may get resolved.  That time could potentially be spent in the NICU, or another option would be to go home on a feeding tube and continue working on the bottle feeding.  We are not at that point yet, but it will be a point of conversation in the days to come.

One thing is for sure..he has the sleeping thing down.  Oh, and the congenital sleeping with the mouth open disorder...that is not down syndrome, he gets that from his mom.

Sunday afternoon brother time.  Emmett is looking to best his record of 26 seconds in the NICU before requiring he be removed from the room.

Emmett was wanting more hand sanitizer while holding Ben...his reasoning was not disclosed, and thus the request was denied.

What do you mean you have never decorated a crib with a balloon animal circle covered in stickers...are you new here?

Family Photo

Had I realized that we would be taking our first family photo with Ben I probably wouldn't have let Parker dress himself in his homemade, red tie-dye shirt (which after a couple of washes is now his solid pink shirt).  Nevertheless, we were excited to have the whole crew together.

Emmett met Ben for the first time today and he went with the hand on the head, hand on the chest, double security hold.

Emmett's sweetness was video worthy.  You'll have to turn up the volume and pay attention 18 seconds in, for what can only be described as perfect irony as Emmett sternly shushes the room...seriously Emmett?  And don't worry, although it appears Parker went into anaphylactic shock in the background at the end...he had just gone more than 2 minutes without doing something to make Emmett mad, so he was getting antsy:

We think Parker will end up being Ben's best teacher, explaining to him how to do everything and giving him the real story on how the world works, like how salt got into the ocean (bet you didn't know it involved helicopters with large bags of salt).  We think Emmett will be his protector, while at the same time his most immediate threat of injury.  Emmett will teach Ben how to wrestle and how to play demolition durby on their rolling bug toys, but in the end, he's got Ben's back.

Also, yesterday was Day 3 of the great binky sucking challenge of 2013.  No progress...

Hormonal Imbalance

In a household of men, we generally try to keep hormones at bay.  Ben has taken this a step too far and they have determined that he has Hypothyroidism.  This is common in children and adults with down syndrome (about 10% at birth).  Hypothyroidism means that he has a malfunctioning thyroid gland and his body does not produce enough of the hormone, Thyroxin.  The Thyroxin hormone, promotes growth of the brain and some other important parts of the body...but we can stop at the brain, it is kind of a big one.

Luckily, this is very easy to treat and correct.  Ben will require a daily dose of the Thyroxin hormone for the rest of his life and it is basically as simple as that.  We will just need to give him the hormone his body is not developing and all is well. Now...on to the issue of who is going to make sure he takes his pill EVERY day.  Seeing as how Parker has had approximately 3 daily vitamins in his 5 years of life, we are somewhat concerned for Ben.

This new finding has introduced us to a new field of medicine, endocrinology, and also allowed us to interact with doctors #42 and 43 that have had something to do with Ben's care.

In other news, we are still working on getting Ben to suck on a pacifier and then he gets to move up to trying to eat from a bottle, once he learns how to suck.  To provide some perspective, we are two days in on the attempts at the pacifier.  After about 5 minutes he gets all wore out and enters his favorite comatose state. But he is at least waking up some and giving us a glimpse of his eyes.

Pre-Sucking Lesson:

5 minutes later...

Baby Ben Version 2, now wireless

Happy to report that there is not much to report.  Ben has just been busy working on his tan and dropping tubes and cables like it is nobody's business.  Thanks to a very thoughtful Aunt Liza he has  also done some re-decorating.

Aside from working on his complexion, Ben had his I.V. removed and is off all breathing support. He is down to the feeding tube, which is now conveniently located down his nose in case he wants to use his mouth to eat at some point.

Parker got to hold Ben today and there couldn't be a prouder big brother.  Ben perked up and even gave us a glimpse of his eyes, when he figured out his big brother was holding him.  Emmett still thinks Ben lives inside our phones, but the phones get lots of kisses and are frequently wrapped in blankies to show his affection.

Parker and Emmett are smart enough to be aware that Mom has needed a little extra love these days, and Emmett is getting about as kissy as they come.  I think he can sense he has some competition brewing.

Speaking of Emmett, we are starting to wonder if we missed some sort of "diagnosis" with him: