Sunday, October 23, 2011

Things McKenna can do with a cast

1.  Run run run
2.  Ride a tricycle

 3.  Carry a baby doll by the foot

 4.  Eat like there's no tomorrow

 5.  Hug a bunny

6.  Empty out a tissue box into the crib
7.  Make a thumb magically disappear 

8.  Drink out of a sippy cup

9. Chase a kitty

10.  Open a present

11.  Dress up like a gnome

12.  Celebrate Daddy's birthday

13.   Frolic in the leaves

14.  Crawl up stairs holding a rattle

 15.  Be 100% adorable

And we still have ten more days to go....

Monday, October 10, 2011

Surgery Over!

          We are thrilled to say that McKenna came through her surgery today with flying colors.  It was a long day for everyone, but things went very well.  Her surgeon was very pleased with the results of the surgery and he showed us several pictures of her fingers with the stitches in them before they put the cast on- they look great!  She finally went in for anesthesia at around 1:00pm, and we spoke to Dr. Taghinia post-op at about 5:30.  Then they did the echo and moved her to the PACU, and we were able to see her around 6:30pm.   She woke up pretty disoriented and in a decent amount of pain, so she turned into Superman in our arms and was quite impressively trying to get loose, move around, etc.  Two doses of morphine helped, and she is now sleeping soundly.  We are hoping that she can now sleep for most of the night, and that her body can get the rest that it needs.  They put a pain block in her wrist at the end of the surgery, so that she could not feel her hand, but that will be wearing off soon.  Hopefully the pain management will work well and she won't feel it too much.  The surgeon said that the first two days will be the hardest, and that her pain will decrease significantly after that.  She also had quite a bit of nausea and vomiting after she woke up, and hasn't been able to keep any fluids down yet, so she is still on IV fluids.  Hopefully that will have improved by the time that she wakes up.
          I think the only funny moment of today occurred while we were in the PACU, and she started to vomit (no, that's not funny, wait for it...).  She clearly had a bunch of crap in her chest and it was causing her to cough and gag and puke.  So after a few rounds of this, Brett asked the nurse to listen to her chest again, to make sure she didn't aspirate or have any fluid in her lungs.  I don't know if she didn't hear him, or just didn't do it fast enough, but I turned around a few moments later and Brett had whipped his stethoscope out of his backpack and was listening to her chest quickly while the nurse was facing the other direction.  Who carries a stethoscope in their backpack anyway???  I was astonished.  And then, I was not.  I mean, that's Brett.  Lol.  What an awesome daddy, listening to her lungs and making sure everything was just right.  He threatened (half kidding) to put her IV himself last night when we were waiting and it was taking too long.  We are so lucky to have him.  And his antics make us laugh, which is also a plus.
          So, anyway, Dr. Taghinia said that if all goes well, we will return for a follow up in three weeks, at which point the cast will be removed and they will make splints/spacers for her fingers.  (She is currently in a bright pink cast that completely covers her fingers except for her thumb and it goes basically up to her shoulder).  We initially thought the cast was going to be on for four weeks, so three is much better!  And, we found out that the splints are only to be worn at night, so that is MUCH better! 
           The biggest concerns for now are that there is no bleeding on the graft sites and the grafts heal well, that the cast stays in place and her fingers are completely immobilized until fully healed, and that the fingers heal without a lot of scar tissue.  Dr. Taghinia discussed her finger bone structure quite a bit, and it appears that we will probably have to do another surgery down the road to remove a part of her bone that is causing her finger to grow crooked.  She is actually almost missing the middle bone of that finger, and he would remove it completely.  We won't know what her finger function will actually be like for several months, so we will have to wait and see.  Its likely that her motion and use will be limited in that finger, so hopefully she will be right-handed and will learn to compensate.  But, that will be another bridge to cross another time....
           For now, we are waiting to meet with Dr. Newburger, her cardiologist, in the morning to discuss the results of her echo today (which looked good, apparently, but we don't have exact results) and the plan for continued anti-coagulation (asprin or asprin plus plavix).  She is back on the heparin drip tonight, and will restart the asprin in the morning. 
        Brett is at the hotel, trying to catch more than the three hours of sleep he got last night, and McKenna and I are settled into the room here at the hospital.  Hoping for a quiet, restful night for us all.
        We are so incredibly thankful that McKenna came through the surgery well and that all appears to be as it should be.  We had an amazing team of doctors working very closely from both cardiology and plastics, and the result of all of that work was a successful day.  We continue to pray now for the next stage of this process and are so thankful for so many joining us in prayer. 
         Our sweet girl was a rock star today.  And she's got the cast to prove it.

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.

Sunday, October 9, 2011

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.

Saturday, October 8, 2011

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.


               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.


Monday, September 5, 2011

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. 

Saturday, September 3, 2011

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.

Tuesday, August 23, 2011

My last last day at work

        Yesterday and today I went into my former job for two days to do some transition work with my fantastic replacement, Jenna.  My official last day was at the end of June, but Jenna hadn't been hired yet, so we were able to arrange two days to go over her caseload, etc. before the start of the school year this year.  Jenna filled in for me when I was out on maternity leave, and I am thrilled that she has been hired to fill my position now that I have resigned.  My in-laws were kind enough to come babysit McKenna for the past two days, and I went in to work.
        Since its the beginning of a new school year, it felt quite odd.  I felt like I was back to work, getting ready to start a new year.  And I was actually pretty sad about the fact that it was just pretend...  I am already missing it some, and I know I will miss it from time to time now that the school year is beginning again.  I actually quite loved my job, despite complaining about it on a regular basis when I worked there.  (Isn't that always the way?)
         My choice to stay home instead of work has nothing to do with not wanting to work.  I love my career and I love working with my students.  I just felt strongly that my time right now would be best spent investing in McKenna.  We didn't want her in daycare, especially with her medical issues, and paying a nanny would take most of my salary anyway (and as much as I love my job, I'm not really into doing it for free), so it just makes the most sense.  Besides which, I want to be home with her during this exciting and amazing time in her life, as she learns to walk and talk and understand things and communicate and play...  Its amazing, and I don't want to miss it all!  It was a hard choice and I could never, ever judge anyone who has chosen differently, but we talked it through and prayed about it and its just what we feel God has called me to do at this point in our lives.
        I am beyond thrilled to now be a stay-at-home mom.  It is a blessing and privilege, and I am so very thankful for a husband who supports my desire to be home and that I have the opportunity to be home with McKenna while she is so young.  At the same time, it is a very different life than I am used to living.  Its exhausting, first of all, especially with our dear one, who craves interaction with others and intellectual stimulation on a constant basis and doesn't nap much.  During the day, I am by her side pretty much every moment she is awake, and due to her limited napping, that equates to most moments of the day.  There is virtually zero time to get anything done and I have very little time to myself.  I am lucky to have my parents around most of the time, since we are currently staying with them while Brett finishes school, but they will agree with me when I tell you that McKenna is really a multiple-person job.  So its just a very busy and tiring day!         
         Secondly, its not very intellectually stimulating.  Its just not.  Let's be honest, Baby Einstein and blocks and stacking rings and balls and The Hungry Caterpillar just aren't as fascinating to us as they are to our children.  I adore watching McKenna play and smile and giggle and stare intensely at things as she tries to figure them out, but sometimes I miss using my brain.
         Thirdly, my interactions with other adults are pretty much limited to my husband and my parents and a few wonderful friends who I text with during the day.  I love my parents very much.  I obviously adore my husband.  My friends help keep me sane.  But I used to spend most of my days with other adults, working together to help our students, and its just not the same.  Its not bad.  Its just different.
        So for the last two days, if I'm being completely honest, I kind of felt like I was on vacation.  I stopped at my favorite coffee shop on the way to work and finished  my delicious Jamaican Blue coffee while it was still hot.  No one screeched or cried or shouted at me. I ate my lunch at a leisurely pace. I could use the bathroom whenever I wanted to, without rushing.  I used my brain.  We talked about psychiatric diagnoses, complicated family dynamics, counseling strategies, logistics of time management and scheduling, the successes and failures of last year's efforts, the delicate nature of some staff interactions, the very recent death of one of our middle school students and its impact on our student body, and the general day-to-day challenges and benefits of working within our educational system.  We laughed about some of the ridiculous situations that are encountered in this job.  We teared up while talking about the amazing emotional progress made by some of our more challenging students.  I felt intelligent.  I felt interesting.  I felt like an adult.  I felt like my other self.  I even felt kind of pretty.  (Real clothes and makeup and jewelry can have that effect on you).
        And then it was over.  And I was kind of sad about it.  And I came home, for the LAST last time from my job.  And my sweet, adorable, beautiful, amazing daughter was waiting for me.  And when I walked in, she grinned from ear to ear, and squealed with glee, and bounced up and down in her grandma's arms, kicking her little legs and waving her little arms with total abandon.

         And I felt loved.

Monday, August 15, 2011

Surgery is scheduled...

We finally got confirmation from Boston Children's today that McKenna will be having her hand surgery on Monday, October 10 (Columbus Day).  We will be going in for her pre-op appointment on Sept. 30th to make sure that her bloodwork and everything else looks ok for surgery.  We will be checking in at Children's on Sunday, Oct. 9, and hope that she will be discharged on Tuesday, the 11th.
After getting clearance for the surgery at her last appointment, we were hoping that the surgery might be sooner than this, but it is a four-hour surgery, and the long time blocks for September were full already.  So, October it is.  The most disappointing aspect of this (aside from just wanting it to be over!) is that it means McKenna will stay on her injections for 55 more days.  Sigh.  That's 110 more injections, for anyone who needs help with math.  That's a lot and it makes me really sad.  I just really want to be done with that- she will have been on the Lovenox injections for about 8 months by the time she has her surgery, which will have been over half of her little life.  But, we have prayed that her surgery date would be in God's timing, and so I have to trust that October is the right time for it to happen.  Perhaps her arteries need a few more weeks to get stronger, and if that's the case, then of course waiting is the best plan.
We are thankful that her cardiology team and plastic surgery team will be working so closely together and it gives us great peace and confidence knowing that her whole team is in the same place.  And now I have 55 days to figure out how to dress a baby who will have an arm in a cast for a month in cold weather!  I have a feeling she will have some one-armed shirts before this is all over... 

Wednesday, August 3, 2011

Boston Children's Hospital- 8/3/11

Today we spent the day at Boston Children's Hospital.  McKenna had a sedated echocardiogram at 9 am (we checked in and started sedation at 8 am), a consult with Dr. Newburger (her cardiologist, who specializes in Kawasaki Disease) at 10:30, and a consult and x-rays with her plastic surgeon at 1:00.  We finally got in the car at around 2:45, so it was a long day, but it was a really good day.  She was such a trooper, and hung in there through lots of long, unpleasant, exhausting appointments. 
Her echo shows some continued improvement in one of her aneurysms and a very slight improvement in the other.  Based on her current measurements, Dr. Newburger said that she feels the chances of her developing a clot are very small, which is great news.  She also said that she felt it would be safe for her to have her hand surgery soon, even though that will mean that she has to come off of all of her anti-coagulation meds for a time.  She feels that once the surgery is over, it will be ok to change her medication regime to either asprin only or asprin and Plavix.  Both options are better than what we are doing now, since that will mean we can stop giving her the Lovenox injections twice a day!!  The poor thing has been having injections twice a day for five and a half months now, and her little legs would be very happy not to have bruises all over them anymore.  And her mommy and daddy would be VERY happy not to have to give her injections anymore...  So that is all great news and gives us lots of hope for some big improvements very soon.
Then we met with Dr. Taghinia, her plastic surgeon.  We haven't seen him since our initial consult when she was about two months old.  He and Dr. Newburger have been in touch several times about her care, however, and it is so nice to have doctors who are willing to collaborate so well to make sure that she is getting the best possible treatment.  He was thrilled to hear that she has been cleared for surgery, and we will be scheduling it next week.  It is likely to be sometime in September.  While I completely dread the thought of our sweet girl having surgery, I am also excited for it to be over and for her to have fuller use of her fingers.  She will be in a cast for about a month, and then will have splints on her fingers for another six weeks after that.  Lord help us.....  Its going to be an interesting fall, since I am sure our sweet, fiesty girl is not going to be amused by either of those things.  Yikes....
In any event, we continue to be completely impressed by everyone that we encounter at Children's.  It is an amazingly kind, compassionate, friendly, down-to-earth place, with incredible doctors, nurses, and staff members.  Everyone there is just fantastic.  They have recently been ranked by US News and World Report as the #1 Children's Hospital in the country. We feel so blessed to have McKenna's treatment team located at such a phenomenal place.
And we are so thankful for the ongoing prayers of so many people throughout these past several months.  We know that God has healed her thus far and will continue to work in His perfect way in all that is to come.  So keep it coming!

Saturday, July 30, 2011

Precious Moments

We don't get a lot of moments like these anymore.  So precious.

Jesus Loves Me, verse 203.

This week McKenna and I went to visit our friends Lil, Karl, Lorinda, and Karlisse at their lake house on Lake Champlain.  It was fantastic!  We missed Brett and Charlie (hard-working men, back at home, while we all got to play...) but McKenna loved all the fresh air and the extra attention from Karlisse and other kids who were around, and she slept like a hundred hours a day.  Insane night sleeping and naps.  Apparently Brett could just bottle lake air and use it to knock out his pediatric cases.... 
The weather didn't really cooperate for water activities, but we relaxed and played outside and had fun anyway.  The big kids flew kites and fished and entertained Mickey during the day.  Karl caught a ridiculously large fish.  Lil fileted it.  I didn't gag or puke while documenting it on camera.  We were all successful in our tasks.
My friend Shannon from Casey Family Services now lives in VT, across the lake, and she was able to spend an afternoon with us.  She brought her two darling kiddos, Brennan and Kieran, and it was fun to see the kids all playing together while we caught up.
It was a great time with great friends, and we were so thankful for the chance to spend a few beautiful days there.
Always with the rocks in the mouth...

BIG fish.

Hanging out in the swing with Karlisse
Swinging with Uncle Karl
A storm rolling in
Kieran, McKenna, Brennan, and Karlisse
Karlisse loved helping feed McKenna

Me, Kieran, and Shannon
The lake after the storm

McKenna liked petting Karlisse's bunny, Snowflake

So proud to be sitting in her own chair
Great memories with great friends!

Auntie Lil
Lorinda and Karl

McKenna has entered a new phase in which she hates riding in the backseat of the car alone.  So unless she is sleeping, she is usually whining or fussing in some way back there.  We were lucky to have Lil with us on the trip up, so that went pretty well.  On the 2 1/2 hour trip back, though, it was just us.  She slept for the first hour and was then awake the rest of the way.  Her fussing escalated to crying, and I tried valiantly to entertain her from the front seat.  She was clearly very annoyed and hurt and insulted that I wouldn't take her out of the car seat.  We sang Old MacDonald a thousand times.  Usually on our shorter journeys, this helps get us from point A to point B.  But this was a longer and more insulting trip for her, apparently.  Sometimes she responded with her "Ee-Oh" line and other times she ignored me and continued to wail.  Sometimes she would tearfully respond with a pathetic "Ee-oh", as if she HAD to do it even though she didn't want to.  That was adorable. 
Eventually, Old MacDonald lost its charm, so I moved on to our other favorite wail-stopping song, Jesus Loves Me.  It worked.  For quite a while.  I sang it for about 45 minutes.  Every time I stopped, she wailed.  So I just kept on singing.  To make it more interesting (mostly for myself), I made up lots of new verses.  "Jesus loves it when I ride, quietly without a cry, He thinks I am very strong, listening to mommy's song."  Etc.  There were verses about crying, and traveling, and playing with friends, and sleeping, and going for walks.  There might have even been a verse about Jesus making mommy lots of wine to drink.  If so, that would have been towards the end of the trip......
We made it, not without having to pull over on the Northway because she was tired of Jesus Loves Me and was infuriated with me for ignoring her pleas, and she cried so hard she made herself gag and then puke all over the place.  Sigh.  She is a strong-willed girl, that's for sure.  Life is going to be a series of interesting rides, I believe.
Thankfully we have Jesus.  And wine.