The Sun Will Come Out Tomorrow...

...or so the forecast says! After a dreary week, I am singing that song loud and clear! It's a good thing we didn't have any big plans for today because the weather decided not to cooperate again. Magnus slept in so late this morning - woo hoo! Poor thing really needed it. I decided to take a long walk in the morning and just see what we would see. We had a nice little breakfast at a bagel shop and set out to discover Boston. We quickly found Harvard Medical School, it's right past Boston Children's. I had to snap a pic, just in case we have a possible future alumni in the family!

We continued on and found a great little shopping area, a fire house and the Basilica of Our Lady of Perpetual Help. The basilica was breathtaking. As I was taking in its beauty, Magnus discovered how an echo works! He had enough ECHOs of his heart so he was using his voice this time. Luckily, there were only three other people who all thought he was cute and not disturbing. As I lit a candle and began praying for Monday with teary eyes (and Mags's echos in my ears), an elderly and gentle man approached and asked if he could give us a blessing. I was so touched as he prayed over both of us. His beautiful words to our mother Mary were just what I needed and brought instant peace and strength. He spoke so beautifully that I thought he had to be a priest even though he wasn't wearing his collar. Sure enough, he was. Thank you Lord, you always know when I need you most.

We continued on and found a fire house. The door was open so we stopped to stare at the firetruck inside since it is one of Magnus's favorite toys. We crossed the street and were walking away just as the firemen hopped in the truck with the lights going and started to leave. They all waved goodbye to us with big smiles on their faces. Magnus ate it up, surely the highlight of his day.

Oh and another little goodie about our time at the basilica - I was catcalled while standing outside, adjusting Magnus's blanket to make sure he was warm. Not just a couple of comments. All out hoots and hollers from apartments across the street! Like I've said before, you just can't make this stuff up! We quickly skidaddled on our way!!

We hurried on "home" because Mike's flight had landed. I was so excited for the reunion! It took awhile for him to get to us because his luggage wasn't on his plane...argh. He barely made his connecting flight in Philadelphia so they didn't have time to get his suitcase on the plane as well. After the delay, he showed up with all of his belongings and it was the happiest of moments. Mags smiled from ear to ear and giggled at Daddy's silliness. All were hungry so we showed Mike the ropes and headed out for lunch. Magnus was way overdue for a nap so we went back to rest up. After a 3.5 hour nap for Mags and almost as long for Mike, we wanted to see Fenway Park.

And our girls, they're not missing a beat and having tons of fun!

Time for Mike to jump in and blog a bit!

As we were getting ready to head out from the house where we are staying, we saw that someone had brought in an entire barbecue meal for the families. We sat down and ate, but Magnus was not interested in this noodle-less, rice-less nonsense. He looked at the corn on the cob like he thought it was going to move on his plate.

The walk to Fenway was a brisk one as it was misting a bit of rain. We could even see our breath. That of course got my curiosity going and I had to google to see why we could see our breath when it was still in the 50s. In case you're interested: http://wonderopolis.org/wonder/why-do-you-see-your-breath-when-it-s-cold

Fenway was really cool. Even though the Red Sox are out of town there was still a lot going on. The House of Blues had a heavy metal band playing that would have made my Dad say "what is this world coming to?" There was a street vendor selling "wahm hahtdogs". There were some people that were going into the stadium for some young business professional thing. We should have tried to see if they would have accepted Magnus as a junior member and let us in. Oh well.

We headed back to the house for some leftover chicken fried rice for Mags and then to bed. With the 3 1/2 hour nap, he is still not asleep and it's 10:30 here. He thinks it's funnier than we do! Tomorrow we plan to go to mass at a local cathedral and then try to see some more of Boston...hopefully with sunshine. 

I can't express how much we appreciate all the support everyone is giving us. We are so fortunate to have such amazing family and friends that are helping us make this possible. THANK YOU!

Lack of Sleep=No Clever Post Title :)

We're going to keep this short today with there being a direct correlation to the amount of sleep we got last night. Our day started a bit after midnight with Mags's oxygen saturation dropping to the 60s (not good!). It continued to drop periodically and then he spiked a 102 fever at 3:30am. The nurses tried to draw blood to see if he was starting an infection but couldn't get it after two pokes. As you can imagine, my buddy didn't handle it well. We were able to get a bit of sleep until he needed a chest xray at 6:30am. It went better this time than the first go-round, probably because a 300 pound male nurse was helping hold him still. :(

Trying to order breakfast

He wanted Mommy to match him

We were up and playing in the playroom by 7am and didn't come out for a couple hours. We laid back down and were awakened to Magnus's cardiologist standing over us. Talk about embarassing! In retrospect, I definitely should've freshened up for the day by that point! Magnus's fever had dropped and they felt comfortable discharging him without drawing any more blood. It took several hours to leave, especially because we waited to meet with his surgeon who was in the OR. Dr. Emani was fantastic and I'm thrilled his skilled hands will be the ones meticulously mending Magnus's heart. I love that he said we are the lucky ones to have Magnus. He got it right and totally understands adoption! We spoke at length and then swiftly left to return to our patient house.

Breakfast on the go

Flirting with his favorite nurse!

We slept, ate and played for the remainder of the day. We've seen and smiled at a nice Chinese couple with their small son for a couple of days. Finally, we spoke through Google translate during dinner. They are here for four months while their 2 year old son has heart surgery. Whoa! They are so kind and loving towards Magnus. They even offered their delicious smelling dinner to us. The boys played quite a bit with Mags being the playground bully. Oh nooo, that's not gonna fly! There were a whole lot of stern "no's" going around!

Ecstatic to have broken out of the big house!

I'm thrilled to think that we don't have an early morning for the next two days. I sure hope Magnus remembers to sleep in so we're both cheery when Daddy arrives! Tomorrow is going to be a good day!! :)

And His Doctor Said BIVENTRICULAR REPAIR!!

Day 3 of early mornings for this duo. Magnus really had a difficult time waking up this morning. My sweet, sweet baby boy.

We were happy to see it wasn't raining, just cold as we set out again for the hospital. People are walking around with winter coats and gloves. I'm definitely missing our warm St. Louis weather! We arrived at the hospital with time to spare so we played in the waiting room for about 1/2 hour. They have a magnetic sand table which Magnus loves at St. Louis Children's.

We were called back and made ourselves at home in his room. His nurse, anesthesiologist and MRI tech went over everything in detail. We played for another 1/2 hour and he tried to dismantle mulitple machines. He is so inqusitive and tries to figure everything out. Then they gave Mags an oral sedative to take the edge off before he was fully sedated. His little body started getting heavy and he slowly drifted off after 15 minutes. I kissed his soft cheeks and my special spot in between his eyes as many times as I could and held back my tears until I got to the waiting room. The nurse said I should really take a walk and grab a bite to eat. I was hesitant but followed orders.

The nurse called every hour to update me on Mags's status. They were done with the MRI after 1.5 hours and the ECHO an hour after that. He was then transferred to the cath lab where I received a call from a doctor asking if I'd like to meet him before he starts. No sir, please just do what you have to do so my baby can come out of anesthesia and get that breathing tube out. After an hour, a cath lab nurse called to say he was very comfortable but they were still very early on. And wouldn't you believe that the the fire alarm just above my head went off and everyone jumped out of their seats. We weren't sure what was going on until the delayed announcement explained that it was a only a practice. All of the families were on edge so this was quite unwelcomed by all! I finally got the last update call at 2:15 that the cath was finished. It took about two hours, just as they estimated. After another hour, I was called back to his recovery room. He didn't do very well while coming out of anesthesia. He had some secretions in his airways so he sounded like he had bronchitis and a sore throat from the breathing tube. His oxygen saturation rate is usually in the 70s but he had dropped to 59. I almost lost it. They had to give him several calming meds along with oxygen through his nose. He was required to lay flat for 6 hours post-cath (I thought, you have GOT to be kidding me!). He screamed on and off for a couple of hours. Nothing seemed to work except apple juice and a walk around the unit. The nurses allowed him to lay in his stroller so I pushed him for an hour as he slept.

He was then transferred to the step down unit for the night and we hope to be discharged tomorrow. He was allowed to have plain rice and noodles at 6:30pm which was his first time eating for the day. He refused the noodles but acted as if there was a prize on the bottom of the rice bowl if he ate it fast enough. After the 6 hours were up, multiple tubes and lines were disconnected and he took a short walk with his nurse and me holding him steadily. He walked to the treasure box and picked out a puzzle which he fell asleep holding in his hospital crib.

Oh yes, what you all have been waiting for as the post title suggests. At the end of the day, Magnus was confirmed as a strong candidate for the full biventricular repair!!! Thank you Lord!!!!! Oh goodness gracious, thank you!!! Dr. Marx stopped by to briefly discuss the results of today's procedures. He along with three other physicians agreed that the bi-vent is in Magnus's best interests!!! He explained that it won't be an easy repair due to Magnus's anatomy. He will come to visit again tomorrow and speak in more detail along with Magnus's surgeon, Dr. Emani.

Today has been exhausting but oh so worth it!! I'm off to catch a couple hours of zzz's before the nurses come in to check Mags's vitals. Tomorrow, we should be discharged to go back to rest up. Gladly, I say!! :)

All our love,

Dana & the Amazing and Ever So Handsome Magster

Boston Strong

Whew, our first full day in Boston - check! It was informative, adventurous and tiring! Magnus wasn't too thrilled with the whole waking up early thing and showed it!

We walked to the hospital bright and early and stopped at Au Bon Pain where Mags devoured a carrot cake muffin (note to self, add that to his list of his edible foods). I thought I knew where I was going for Cardiology Pre-Op but I was so wrong, ha! A fellow heart mom told me to follow the yellow path or so I thought in my head, the yellow brick road. Well, apparently I would never have made it to Oz because I didn't do well following the yellow signs in the hospital. After two wrong stops, we finally ended up in the right place and still on time too!

It was a flurry of vitals, bloodwork, EKG, chest xray, and meeting several team members. Most importantly, we met Magnus's cardiologist, Dr. Marx. What an absolutely wonderful man! I'm in awe of his brilliance and thoroughly enjoyed talking with him. He took his time and spoke with us at length. He even drew Magnus a picture on his magnadoodle. Mags was exhausted by this point and fell asleep in my arms as we continued to discuss options and how our days ahead should play out. He made it clear that although Magnus is a strong candidate, he isn't a shoo-in for a bi-ventricular repair. This means he could have two fully functioning ventricles like a normal heart. They won't know until all of the procedures are completed tomorrow. It was hard to hear that but I know they will do what's best for him and we accept whatever that may be. He will most likely stay overnight tomorrow since he is so young and having a long sedation (possibly 6-7 hours). I hope I remember to grab our toiletries tomorrow morning as a fumble around in an early morning stupor! He is one of the first patients at 6:45am-yikes!

I've mentioned that I belong to an incredible group of heart moms who just rock in this world. Their care and concern for each of us is second to none. Recently, a precious little heart warrior just home from China earned her angel wings here in Boston. She touched so many of us and I wanted to honor her by making a shirt for Magnus to wear. We pray for sweet Eisley and her family often and hope we brought a smile to their faces as Magnus rocked his special shirt.

Doesn't matter where, I'm still dancing!

We finished at 12:30pm and returned to our Dragon Chinese restaurant. It was if the same women hadn't seen Magnus the day before - they made as big of a deal about him as yesterday. Such a ladies man which helped score us some extra scoops of chicken teriyaki! Work it little man, work it! We both napped and agreed to take another adventurous walk. I'm pretty sure Mags said he was missing Target :) so we set out to find the one just 15 minutes away. We bought some essentials - a Boston shirt, gummy bears and Pepsi for Mommy and suckers for Magsy Moo. We covered all the bases!

The statue, Dancing Man - so appropriate!

Ah, home! :)

We stopped at a Bread Co on our way back which is one of our favorites. Little did I know that it began to pour while we ate. I didn't have a choice to wait it out because I didn't want to be stuck out so far in the dark. We high-tailed it with me running the 1-2 miles back. Last year, I would've laughed at that distance. Today, I almost passed out! Sadly, I'm sure I'll feel it tomorrow...wah wah wah.

The girls are doing great and we're Skyping them all the time. Tonight, Anya and Grammy are at their last show at The Fox Theatre, The Sound of Music. Hope they're belting out "Rain Drops on Roses" and "Doe a Deer" for me!

I'd like to send out a special thank you to all of the generous families from our church who have signed up to provide dinners to our family. Our dear family friend sent out the request and we have dinners provided for the next month!!! We humbly thank each and every one of you for your thoughtfulness and care for our family. It means more than you know!

So tomorrow is even bigger than today. We will get immediate answers about the functionality and anatomy of Magnus's heart. I am nervous and worried but very hopeful that there won't be any surprises for his future care. Lots of extra prayers as we got ready for bed tonight!

Thank you for all of your texts, FB messages and calls. We love you and feel the love and prayers you are sending our way!

Alright little man, let's see what's going on in that little broken heart of yours! As Mike said to us as we left, "Boston Strong"!!

Ready Or Not

Boston, we have arrived! Make way everyone, we're here to fix a little, broken heart!

We started the day out early as we stumbled out of bed at 5am for a 8:15am flight. Anya has the most impressive and accurate internal alarm clock so she was there to see us off with Mike.

I was able to keep my tears at bay through our goodbyes but choked up as I yelled "I love you" one last time while pulling out of the driveway. I have a lot of tears that I've been holding back but I feel they will be streaming soon.

We picked up Grammy on the way to the airport so she could drop us off and take the car to work. There's nothing like getting a last hug from your mom!

The security line was super duper long so we only made it to our gate with 10 minutes to spare. Like I need any more unnecessary stress on this trip! We had just enough time to get the classic "look out the window at the plane" pic.

I wasn't too concerned for our flight since Magnus had just rocked a 14 hour flight home from China. He did great until the last 15 minutes. He was D-O-N-E and let it be known to everyone! The man next to him had slept the whole flight so Mags must have figured it was time to get him up!

We hustled off the plane, picked up our two large suitcases (totally struggled with those, two carry ons and a stroller even with a cart). Hey, I had to pack very light for China. This time, I decided to pack everything we may possibly need and the kitchen sink to be sure! :) I used Uber for the first time which was fascinating and successful. Score one for Mommy!  After a quick 15 minute ride, we found the patient house that will be our home for awhile. We settled in and decided to go on a walking adventure. It was drizzling but we managed not to melt! The hospital is several blocks away so we were able to see exactly where we need to go tomorrow since our first appointment is at 7:30am. On our way back, we stopped to eat at a food court and chose the Chinese restaurant, of course! The women working there went nuts over Magnus and spoke a million miles a minute to him. He smiled, flirted (shocker!) and answered back once. They called him lucky and I nicely corrected them that I am the lucky one.

We returned to our home away from home, took a nap and played in the play room for a bit. To our delight, we met two other China heart families. We chatted and then headed for a hot shower. We were ready for snuggle time but not before Mags got down to some more Pippi Longstocking (just like in China!). I have a video but it's not posting so I'll try again later.

As I lay here in Boston, half of my heart is in Troy with our girls and Mike. They're doing great without me though, playing ball and making this mama proud!

Tomorrow is a big day and we're ready! Let's do this!!

All our love,

Dana and Her Little Warrior