Waiting waiting waiting...

     
          Brett and McKenna slept on and off last night, with some periods of being awake due to checking vitals and little roommates crying.  :(  I slept ok in the hotel, but kept waking up wondering how they were doing...  She was awake at 3:30am, so she got to have one last bottle of milk before being cut off at 4am.
         This morning, she has been drinking lots of juice and trying to play.  She watched an Elmo movie for a while, and we read lots of books.  They took her off the heparin drip at 8am, and started her on IV fluids at 10, so she had two hours of freedom from wires and tubes.  We played in the playroom and walked around the halls for a while, taking advantage of the time while we could!  She was actually trying to run down the hallway, lol.  That's our girl.

         Its 10:30am, and she just fell asleep in the crib, which is good timing since she is connected to the IV anyway.  We expect them to have us go down around 11:30am, with an estimated surgery start time of 12:00.  Dr. Newberger's assistant Annette stopped in this morning to check in.  Dr. Newberger (McKenna's cardiologist) just got back from India this morning, and she will be in tomorrow.  Annette is making sure that her echo gets done today, so that Dr. Newberger can make a decision about her meds for tomorrow.  Depending on the results of the echo, she will hopefully either be on asprin and plavix, or just asprin.  Either way, no more lovenox injections, so that is a MAJOR celebration!
        Dr. Taghinia expects the surgery to take 4-5 hours, due to the need for precision in separating the muscles, ligaments, veins, etc. and getting the grafts prepared and in place.  The echo will happen post-surgery, so we are anticipating not seeing her until around 4:30 or so.
         Lots and lots of waiting.

Children's Hospital Boston, Day 1

      Well, its late, and I'm exhausted, but I wanted to share a brief update before crashing.  We got here early today and were able to have a quick lunch and visit with my brother, Brian, and my parents (who were also visiting Brian).  We got to see the most awesome new gym in Somerville, MA, Commonwealth Crossfit, which is my brother's fantastic new space!  Looking forward to seeing it open very soon!

       After that, we checked in at the hospital, and were up in McKenna's room on the Cardiac Floor by around 3pm.  She is sharing a room with a little boy from Tampa who had open heart surgery three weeks ago.  People come from ALL OVER to be at Children's- we are so lucky to have it close by.  Thankfully, once her initial check in was done, she didn't have to stay in her room.  So we took her to play in the playroom, went for some walks, played in her room, etc.  It made it much easier not to have her stuck in the crib, since she wasn't on any IVs or monitors yet.  Her IV for the Heparin drip was supposed to have been in place by 7:30 or so, but the IV team was swamped and finally someone from the floor agreed to do it.  While we were waiting, she ate some dinner in the room and was exhausted bc of course she didn't take any afternoon nap.  We kept her awake for the IV placement, because otherwise we were sure she would fall asleep and then have to get woken up right afterwards for the IV.  So by the time we went for the IV at around 8:30, she was sort of beyond herself tired......
        Thankfully, the nurse was able to get it in on the first try, yay!  McKenna was NOT happy about the process, but at least it went quickly.  They were also able to do her blood draw with the same stick, which was great.  Much better than when she was sick and it took 15 or 20 tries to get an IV in!
          We gave her a bottle right after that, and she was asleep in about five minutes.  Hopefully she will sleep through the night and not have to get woken up a bunch of times for vitals, etc.  Brett is staying in the room with her tonight, and I am at our hotel across the street.  Its my first night EVER sleeping in a different place than her.  Weird.  But I am so tired, I think I'll actually be able to sleep...  There's only room for one person to stay over with her, and since we are sharing a room, it is really quite crowded.  Brett can monitor the heparin drip tonight, and I will stay over with her tomorrow night.
          She can't have anything to eat and no milk to drink after 4am, so its only juice and water in the morning.  Her surgery is scheduled for noon, and she is the third surgery of the day for Dr. Taghinia.  We are hoping this is so that he can get two easy, short ones out of the way and then spend the rest of his day focused and not rushing through McKenna's procedure, which is obviously the most complicated and longest.  They have estimated that it will be 4-5 hours for the surgery, and they are also going to try to do an echocardiogram while she is still sedated, so it could be quite a long process.
        So, tomorrow morning she will come off of the Heparin drip around 8am, and we will entertain our hungry girl the best that we can until its time for her to go in around noon.  Thanks for all of your prayers and encouragement.  We appreciate it so much and so does McKenna!
      And now, sleep.  Tomorrow is going to be a long day.

McKenna's Syndactyly Release Surgery

        Tomorrow morning, we are heading to Boston Children's Hospital for McKenna's hand surgery, which will be Monday, Columbus Day, October 10th.  We have to get there a day early for her pre-op tests.  Also, we are discontinuing her Lovenox injections after tomorrow morning's dose (hopefully forever, yahooooooo!!!), so she has to go on a Heparin drip tomorrow evening before the surgery.
         When McKenna was born, no one noticed or mentioned that two of her fingers were joined together.  After she was with us for about a half an hour, I noticed.  I'm amazed that I stayed calm, but I did.  I saw that they were joined and said to Brett, "Hey honey, two of her fingers are stuck together!"  We told the nurses and the Dr., and they didn't really react much (which seemed kind of odd at the time, but I'm sure they were hoping we weren't going to completely freak out). 
            They told us it was the most common hand birth defect.  It happens to 1 in 2500 babies.  (Not that common, really.)  And its often a genetic or familial trait.  (We don't have anyone in either of our families who have had it).  Its more common in boys. (She's obviously a girl).  And its most often the space between the middle and ring finger that is involved.  (For her, its the middle and pointer finger on her left hand).  So, no one can tell us why this happened to her, it just did. 
           It happens between the sixth and eighth week of gestation.  That's right, SIXTH AND EIGHTH WEEK.  When babies are growing, they initially have all fingers connected.  And then an enzyme is released that separates the skin.  And this happens before the eighth week of pregnancy. Its amazing to me that this happens so early in the process.  So, for whatever reason, for McKenna, the enzyme didn't quite do its job, and her middle and pointer finger did not separate.

             We went in for x-rays and initial consultation when she was about a month old.  Thankfully, the x-rays showed that her bones are not connected, just the skin, so it is considered simple complete syndactyly (simple because it is just skin, complete because it is connected all the way to her fingertip).  The x-rays also showed, however, that one of the bones in her pointer finger is significantly smaller than it is supposed to be, which causes her finger to be shorter than it should be and causes it to bend toward her thumb.  Since the pointer is connected to her middle finger, that finger is also growing bent.  And, her entire left hand is smaller than her right hand, which no one can explain either.  Its kind of interesting and puzzling, really.  So, given her bone abnormality, we were referred to Boston Children's, and are so thankful to have a fantastic pediatric plastic hand surgeon (that's all he does!!) who is going to be doing her surgery on Monday.  Dr. Taghinia doesn't think the bone abnormality is even related to the syndactyly; its a separate issue.  How our sweet girl ended up with TWO hand issues, we will never know.....  Its something that most people don't even notice (her nurses and doctors didn't even notice when she was born), but we want her to be able to have full use of her fingers and hand as she gets older.  So, its important to do. 
            This surgery was scheduled for April, when she would have been eight months old. Dr. Taghinia wanted to do it then so that as she learned to use her hands, her fingers would already be separated.  But then our girl got sick in February with Kawasaki Disease, (also rare, but that's a story for another blog entry) and we had to postpone the surgery indefinitely.  She has now been given clearance for the surgery by her cardiologist, now that her aneurysms have healed quite a bit and are so much smaller than they initially were.
           The surgery itself is quite a bit more complicated than it originally would have been, due to her anti-coagulation meds, but we are so blessed to have her cardiologist and hand surgeon both at the same phenomenal hospital.  We are thankful to have an amazing team working with us, and we are praying for all details to be attended to for both her hand and her heart throughout this process. 
          So tomorrow we head out.  We are, of course, nervous about the surgery itself, and also about the recovery process.  But we are optimistic and know that she is in great hands.  Boston's and God's. Couldn't ask for anything more.
        

Uh-Ohhhh...

               McKenna's new favorite game is to drop things and then say, "Uh-Oh...."  Its adorable.  Even when she does it during church, like she did last Sunday. Its slightly less adorable when she does it instead of taking her afternoon nap, which has apparently decided she no longer needs.  She hasn't taken an afternoon nap all week.  I'm pretty sure she might never again.  Its very sad.  For me.  Since her morning nap is usually about an hour.  Which is not a very long time for me to accomplish everything that needs to get done in a day.  Sigh....  Anyway, I digress.
               So, I am used to hearing her "Uh-Oh"-ing through the monitor when she is in her crib, during her afternoon non-nap.  She throws her loveys and her binky, says "Uh-Oh" after each one, and then eventually cries when she realizes she doesn't have them anymore and no one has come to give them back.  She always falls asleep with her loveys and her binky.  I tried not going in, but then she just cries, and no nap happens.  So then I tried going in, replacing the thrown items, and sternly saying, "No uh-oh," and walking back out of the room.  She then played the game again, on repeat, so again, no nap.  No good solution to this little problem.  Except just not even bothering with putting her down for the afternoon nap, which was today's strategy.  Seemed to work fairly well.
              Tonight, when we put her to bed at 7:30, we heard a few uh-ohs over the monitor.  But she quieted down quickly and went to sleep, so we didn't worry about it.  A while later, Brett went in to check on her, and came back out laughing and telling me that I had to come see.

Tonight's "Uh-Oh" Casualties

She threw out both of her loveys, her lovey bunny, the blanket that we put on her when its cold, the bears and bunnies that sit in the corners of the crib to protect her head from getting banged, the towel that we temporarily had put against the far wall of the crib to stop her from slamming her head into it, and even her glowy seahorse!  Lol.  Every single thing that is in her crib was on the floor.

But she is a smart girl, and a quick learner.  This time, she kept the binky.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 Sleep tight, silly baby.

 

Family Photo Shoot Me

We have a really hard time getting nice family photos.  McKenna doesn't really like to look at the camera or smile, especially if someone else is taking the picture.  She usually scrunches.  Brett doesn't really like to look at the camera either (he prefers to close his eyes).  So, when I saw a deal on Living Social last spring for a photo shoot, I decided it was probably our best bet to get at least one decent family picture.  We bought it, but because of our insane schedules, we hadn't had time to use it yet.  So we decided this was the week.  We have a few days in CT, weather is usually nice this time of year, McKenna is starting to walk and can do cute things in pictures....  Seemed like a good plan.

We were able to get it scheduled for tomorrow morning, initially, which would have been perfect.  Except for the fact that its supposed to pour tomorrow.  Last time I looked, 90% chance of rain.   Given that our shoot was scheduled to be at the beach, that wasn't such a good plan. We had an unexpected (and devastatingly sad) opening in our calendar for this morning because our town's fantastic, amazing, wonderful, Norman Rockwellian (I know, not a word, but its a true sentiment anyway) Labor Day parade has been postponed due to ongoing issues from Hurricane Irene.  (My feelings about that deserve their own blog post, but I have limited time...)  Our photographer, Jason, was thankfully able to do this morning, and so we were good to go.

We all got up, got dressed in our coordinated but not "matchy" clothes, and were on our way by 8am.  We picked a morning shoot, because mornings are McKenna's best times.  She is usually chatty, happy, active, and lots of fun until about 10am, when she starts getting sleepy for her morning nap.  Thus, an 8:30am photo shoot should have been perfect.  Well, today McKenna began sobbing about five minutes into the drive.  Teething, apparently.  Chomping on her fingers ferociously.  Refusing any and all attempts to distract or soothe.  Nothing helped or calmed her down, which is really quite unusual. This lasted pretty much the whole drive.  I was nauseous by the time we arrived, anticipating the stress ahead as we were going to be trying to get her to cooperate for even five minutes.  Sigh.

We pulled into the driveway for the beach, to find a large gate and a stop sign in front of the entrance.  Huh.  That was not expected.  Jason was pulled over waiting for us.  He was equally baffled and said that the parks were supposed to have re-opened post-hurricane last Friday.  But alas.  It did not appear to be so.  Its Labor Day, I would assume people would like to go to the beach...  But not Silver Sands State Park, folks.  Out of luck.  Jason suggested we go to the town beach down the street, and cross our fingers that we didn't get a ticket.  We had, of course, specifically picked Silver Sands because of its gorgeous long picturesque boardwalk over the marsh and the beautiful sand and the fact that we didn't have to worry about getting a parking ticket.  But instead we drove down the street to see what we could find.  Sigh. 

We arrived to see all of the trees, grasses, and plants brown and dead from flooding from the hurricane.  Jason commented that he couldn't believe how dead everything was, because he had just shot a beautiful set of family photos here two weeks ago, and everything was lush and gorgeous.  Apparently outdoor photo shoots after a hurricane aren't a good idea.  Sigh. 

Well, we got to it anyway.  A few awkward shots sitting on a log.  McKenna didn't smile, but she surprisingly wasn't screaming, so that was pretty good.  Then Brett noticed that she was bleeding.  That's right, bleeding.  Because bleeding is what you are going for during a photo shoot, right?  She sometimes bleeds from the spots where we give her the Lovenox injections, but it hasn't happened in a while.  The ridiculous thing about it was that after we gave her her shot this morning (in the stomach), I said, "Let's make sure that we get the Band-aid on tight so that she doesn't bleed during the photo shoot."  I really said that.  And yet, there we were, mid-photo shoot, with blood all over her stomach and clothes.  Sigh.

So, after we recovered from that little disaster, we got some really adorable shots of her by herself, sitting and standing, in the grass (which didn't look TOO dead) and by the fence.  She smiled, and was charming.  Of course, that's because Brett and I were standing behind Jason acting like lunatics to get her to smile.  Much harder to do when we are in the pictures with her.  I am looking forward to seeing those pictures.  I think they are going to be great.  But we do have a million gorgeous pictures of her by herself already...  Again, the goal for today was a family photo.

We posed sitting by the fence for a bit, and I think maybe we got one or two good ones.  Hard to say.  Don't know if McKenna was smiling or scrunching.  Don't know if Brett's eyes were open or closed.  Don't know if my hair was all blowing in ridiculous directions.  Jason was trying to shoot while waving around a plastic bag of Puffs hold her attention and make her smile...  So, the jury is still out.  I was hoping the next set would be THE ONES.

The sun and the clouds were suddenly perfect for some shots with the water behind us.  We hadn't done any water shots yet because the sun was too bright before.  We were finally going to try to get my dream shot, the three of us walking in the sand by the water, holding hands.  It was the one picture that I had envisioned when we booked the shoot.  It was the one I could see hanging in our living room. 

And then, right then, McKenna decided she was done.  DONE.  And by done, I mean inconsolable wailing, tears, runny nose, rubbing her eyes, acting exhausted (at 9:15am, a good hour and fifteen minutes before naptime, mind you).  For about 20 minutes.  No matter what we did.  I might have gotten her calmed down once or twice, but as soon as we moved or began hoping that maybe we could try again, she started back up again.  Jason was exceedingly compassionate and patient while we attempted various things to get her back in the game.  But it was not to be.  Photo shoot time was over.  No dream shot, no pictures in front of the waves, and, I'm afraid, no perfect family shot.  Sigh.

I'm so disappointed.  I shouldn't be surprised, but I guess I hoped with all of our careful planning, maybe, just maybe, it would work out and we'd get what we were paying for.  We shall see when we get our proofs.  My bet:  Awesome, beautiful, adorable solo shots of McKenna, and a bunch of awkward, crazy, funny, imperfect, oddly-expressioned, eyes closed, scrunchy family photos.  At least some things in life are always predictable.  Sigh. 
 

Sleep battles

We always check in on McKenna after she falls asleep and we no longer hear the rustling around, mumbling, and sometimes fussing (or wailing) through the monitor.  Often, it is evident that quite a battle took place before sleep eventually won.

How can this possibly be comfortable?  Isn't your little leg asleep??

Loveys abound, hard to pick which one to use...

And my favorite recent position, laying on top of Seahorse Glowy and lovey, foot hooked through teddy, bent forward in half.

This girl of ours plays hard.  Even when she's asleep.

Why we love Daddy...

One day this week, Brett decided it was time for a wagon ride in McKenna's new red wagon.  It was late afternoon on a cloudy day.  I glanced outside and said, "Its raining."  I assumed he hadn't realized this.  Brett looked out the window and said, "Yeah, it is."  Then he walked into the other room.  I assumed he was going to find something else for McKenna to do.  Instead, he returned with two raincoats.  And a white plastic garbage bag.

Hey mama, what is daddy doing?

Mama, its wet out here!  And dada is tucking a garbage bag around my legs! This is funny!

Mama, I love my wagon!

What now, dada?

Mama, come play with us!

Where is this water coming from?

Huh, that's interesting....

Hee hee.  I like wagon rides in the rain.

Off we go!

 And that's why we love dada.