CT Scan and Hematology Appointments

Sorry for the delayed update! I meant to write this last night but I was just too exhausted.

Yesterday morning Micah had his CT scan. We arrived to LCPH around 6:30a and had to wait around a while.

Micah was taken back around 7:45a. Not knowing Micah and how he reacts to anesthesia, the anesthesiologist expressed concern that his pulmonary hypertension might cause problems and land him in the ICU. Strangely enough, I didn't share her worries. I just knew Micah would do fabulous during the procedure, and...

He did!!

The whole thing lasted only 45 minutes and when they told us we could see him he was wide awake, thrashing about, and aggressively signing for water. Good thing I remembered his cup! He calmed down right away and cuddled with his blanket. They let us leave about 20 minutes later.

Today Micah met with hematology to go over when to wean his blood thinners. They want us to get labs drawn on Saturday too. I hate labs. Ugh. Micah has tiny little veins and some phlebotomists get him the first time... And some dig around under the skin >.< It drives me crazy!

Thank goodness we had something to look forward to after the hematology appointment. We got to visit Ray at Google!! I think it's totally AWESOME that LCPH is so close to Mountain View. Ray still plans to take off a few weeks of work but if Micah's stay turns into months then he can return to work while still being close by. Did I mention I LOVE GOOGLE?! Here's a family photo at the Googleplex.

Anyways, thanks for checking in and thank you all SO MUCH for prayers, donations (wow!), and support. Also, don't forget to stop by Alexandra's lemonade stand if you live in the Fairfax area 😊 It's tomorrow, Saturday, July 9 from 11a-2p on the corner of Burr Oak Way and Oak Leather Drive in Burke, VA. Big thank you to the Rossiters!!

Meal Train for Food Donations

Hi folks!

Quick post. A lot of people have asked if we need food while in California.

Short answer: Some food will help! See below.

Long answer:
Being that we are from Virginia and are currently in California - we're in a little bit of unfamiliar territory. We are so grateful to be staying in the Ronald McDonald House, they provide a lot of free meals. We even have a little fridge, freezer and pantry space. If you want to help by ways of food, check out our "Meal Train" for more information.

Meal Train: https://mealtrain.com/o2mgw1

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LPCH Pre-op

Yesterday we made it safely to Stanford!!! The boys were SO GOOD on the 5.5 hour plane ride. I was seriously impressed.

Today was Micah's first appointment at LPCH. Everything went relatively smoothly! We checked in with the heart center and first on the list was Micah's echocardiogram. He HATED it - probably the combination of not having had a nap yet and the three hour time difference. We tried to soothe him with a lollipop, the Minions movie and singing an extended (and odd) version of the Wheels on the Bus.

Those distractions would only work for a small bit before he'd start to get really upset again. He ended up getting so upset that he fell asleep!! He slept through the EKG and through half of our discussion with his nurse practitioners. Poor guy! Dylan was such a good and patient brother through the 4 hour ordeal (he did have an ipad after all).

Also, I've met two other families here whose children have the same heart diagnosis as Micah!! It's so nice to talk to other heart moms and dads who just get it. Here's a pic of me and Lizzy - her daughter Abby was in surgery today for over 10 hours! She's out now and I was told everything went well - Praise God!!

I'm so thankful for LPCH and the RMH for everything they've done for us - and we've only been here for a day!! They've given us a lot of hope and peace of mind. Tomorrow Micah has his CT scan. We'll update everyone again tomorrow evening. Keep praying!!

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Ready for our trip

Ready for our trip: VA to CA

It's July 4th and we're one day away from our trip to Lucile Packard Children's Hospital in Stanford, California. There's so many emotions and so much to do leading up to the trip, but the family is really in a good spot right now.

Even though it's only been two months since being discharged from Micah's last open heart surgery, it feels like this is the right time to take the next step. Micah's first month back at home was really rough. He was on round-the-clock meds, shots 2x a day, not eating, not sucking his paci, generally distraught, sickly, exhausted most of the day, woke up needing water all through the night, would throw up once a day (at any time) and needed to be on 2 liters of oxygen at all times.

The past month has been much better. Micah's more his old self now. He's back to eating nearly all his calories, not throwing up, no more shots, he's standing and trying to walk, sucking his paci and sleeping really well. He's learning so many new words (sign language). Just today he was asking for his "caterpillar" + "book" (who doesn't love the Very Hungry Caterpillar).

As good as he's been doing, we still acknowledge that he's got a long way to go and a third open heart surgery is the only way to get there. He's still on a lot of medications for his Pulmonary Hypertension. He's still on 2 liters of oxygen because he's only using one lung. When his shirt is off you can see how he has to really pull each breath with his right lung :\

We've really appreciated all the prayers and feel the love, over the past months. With this upcoming trip and surgery, there are so many unknowns. But because of this, Laura and I are in a unique position where we can choose to put our hope in God - and not material things like our home, our nearby friends and family. We trust that He will take care of Micah.

July 5: Check into the Ronald McDonald House
July 6: Pre-op appointment
July 7: CT angiogram & Meet with Dr. Hanley
July 11: (7th) Cardiac Catheterization
July 13: (3rd) Open Heart Surgery


Also, we have a local artist at Yellow Doors Studio, Steve, who drew this for Micah. Please like his work on Instagram.

7 But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me. Israel Will Rise 8 Do not gloat over me, my enemy! Though I have fallen, I will rise. Though I sit in darkness, the Lord will be my light. -made for little Micah

A photo posted by SDSwartz (@yellowdoorstudios) on Jun 30, 2016 at 10:47am PDT

Across the Country

So sorry for not having posted for about a month!! I made a short announcement on Facebook a few weeks ago that said:

"Everyone!!!!! Micah is HOME!!!!! He's still on oxygen and we have a crazy med schedule but I am just SO HAPPY that we're all together again!

Also! Dr. Hanley (the surgeon we contacted about a second opinion) has agreed to take on Micah's case!!!! We'll fly out (maybe within the next two months?) for Micah to get a cath and CT. Based on their findings they'll schedule a date for surgery.

I praise God and have a renewed sense of faith and hope. I'll leave you with the last few paragraphs of Dr. Hanley's letter that moved me to tears."

Micah having his third surgery at Stanford is super special because Ray was born at Stanford Hospital!! Everything just feels right about going across the country and I have high hopes :)

We have been so happy to have Micah back. The first week was kinda rough - he wasn't sleeping through the night, he was vomiting quite a bit, and he was fussy all the time. I think he just needed time to adjust to being home.

Fast forward two and a half weeks and he's not vomiting as much, he's actually smiling, laughing and playing, and we're starting to see the old Micah!

The big news is that we got the dates of Micah's procedures at Stanford:

July 6: Pre-op appointment
July 7: CT angiogram
July 11: (7th) cath
July 13: (3rd) open heart surgery

Stanford will be our home away from home as we plan to take Dylan with us. I'm pretty nervous about not having our huge support system out there with us - you all have been so wonderful with bringing us meals, watching Dylan, or just stopping by to hang out.

I pray for a smooth and uneventful surgery and recovery so we can come back to VA as quickly and safely as possible.

Also, the big M will be 2 at the end of the month! Can you believe it?! We've been so blessed to have him in our lives for the past two years. He's shown us his power of resiliency and taught our family that we are all strong in the face of adversity. We love him so much!

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Second Opinion

Immediately following Micah's cath, Dr. Berger - who specializes in pulmonary hypertension - started Micah on Bosentan. About three days later they started him on Sildenafil. Since starting these drugs (and being extubated) Micah has been making great improvements. He is finally acting more like himself and he's actually becoming friendly with his nurses and doctors!! He is just so brave and strong (and cute too!).

Yesterday evening Micah's doctors discussed his case at surgical conference. They reviewed his entire medical history and discussed possible options to fix his discontinuous LPA. Unfortunately, they decided there is no intervention they can do to correct it.

We are very saddened but aren't giving up yet! Micah's team is now putting together a file to send to Lucile Packard Children's Hospital Stanford in California for a second opinion. There is another surgeon there, Dr. Hanley, who specializes in Micah's heart condition. We pray and hope that his team will find a way to help Micah. Until we hear back, we can focus on healing Micah enough to let him come home.

Right now it seems the only thing keeping Micah in the hospital is his respiratory support. He is on high flow nasal cannula. Weaning his high flow has been complicated by the fact that Micah's diaphragm is not moving in sync with his lungs. The right side of his diaphragm is in the way of his right lung when he inhales. As a last resort, his doctors would consider sending him to surgery to move his diaphragm out of the way. Please pray that he doesn't have to endure yet another surgery.

Here are a few pics for cuteness!!

Second Opinion

Immediately following Micah's cath, Dr. Berger - who specializes in pulmonary hypertension - started Micah on Bosentan. About three days later they started him on Sildenafil. Since starting these drugs (and being extubated) Micah has been making great improvements. He is finally acting more like himself and he's actually becoming friendly with his nurses and doctors!! He is just so brave and strong (and cute too!).

Yesterday evening Micah's doctors discussed his case at surgical conference. They reviewed his entire medical history and discussed possible options to fix his discontinuous LPA. Unfortunately, they decided there is no intervention they can do to correct it.

We are very saddened but aren't giving up yet! Micah's team is now putting together a file to send to Lucile Packard Children's Hospital Stanford in California for a second opinion. There is another surgeon there, Dr. Hanley, who specializes in Micah's heart condition. We pray and hope that his team will find a way to help Micah. Until we hear back, we can focus on healing Micah enough to let him come home.

Right now it seems the only thing keeping Micah in the hospital is his respiratory support. He is on high flow nasal cannula. Weaning his high flow has been complicated by the fact that Micah's diaphragm is not moving in sync with his lungs. The right side of his diaphragm is in the way of his right lung when he inhales. As a last resort, his doctors would consider sending him to surgery to move his diaphragm out of the way. Please pray that he doesn't have to endure yet another surgery.

Here are a few pics for cuteness!!

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