Wednesday, November 18, 2015

Family photos

We're in between hospital stays and happily spending family time at home. 
Dylan just turned 3, Micah is nearly 1.5 years old. 
We excited for the upcoming holidays!

Micah has an MRI this week. He has to be put under anesthesia for the duration of it. We're hoping that the doctors will have a solid plan for when he'll need his next open heart surgery.

Thanks for the continual prayers and support!

Sunday, September 20, 2015

Micah's Fourth Cath: Update and hospital life

It's now Sunday afternoon and Micah's been in the hospital since Thursday morning.  We're at the Heart and Kidney Unit at Children's - which is the step down unit.  Right after the cath, Micah was sent to the Cardiac Intensive Care Unit (CICU).  The main reason we're still here is because his breathing needs to get in order.  Here are some photos and videos from our stay, to help give you an idea of how he's been doing. 

Pre Cath: Thursday
Post Cath: Friday (in the CICU)

Post Cath: Saturday (in the HKU)

Post Cath: Sunday (in the HKU)
Finally removed his oxygen tube!

He's had a pretty solid good night sleep in the HKU both night.  He's been eating and breathing on his own some today. He's still super tired, but actually smiling some today (not around any nurses/doctors, though).  Here's to him coming home tomorrow! Thank you all for prayers and well wishes - Laura and I really appreciate it. 

We didn't do many photos or videos of Micah in his first 100+ day stay at the hospital because he really just laid there pitiful, most of the time.  Now that we know what his personality is like, seeing him in pain causes a different kind of heartache. 

Why does Micah need caths so often? 

His last cath was in Jan, 2015.  This is his fourth cath.  The reason he has already had so many and the reason why he will need them all through his life are mostly for two reasons. 
  1. The cath's give information that is useful for planning ahead.
  2. The doctor can do some fixing up, while they're in there. 

Can't x-rays or sonograms do the trick? or It seems like caths are so risky.. is it worth it?
The image quality is so much better than a sonogram and an x-ray does a different job.  X-ray's will show space and lack of space.  For example, bone (white) and air (black).  It's useful for viewing information about the lungs.  To get an idea about how much better a cath is vs a sonogram, Micah currently has a pseudo aneurism almost the size of a golf ball that they didn't notice via sonogram back in July. 

Being able to balloon the narrowings in his lungs, close off the collateral arteries (too bad they don't just close themselves) and perform other extreme scenario events are some of the fixes that the doctor can perform.  These things that help prevent the next surgery from happening sooner, rather than later.  You want to avoid surgeries on little babies as much as possible. 

Thursday, September 17, 2015

Fourth Cath

One year ago today we were discharged from a 109 day stay at Children's National Medical Center. And to celebrate, we're back in their CICU... 

Micah had a scheduled cardiac cath (his 4th) with Dr. Kanter this morning to check out his heart and balloon any narrowings in his pulmonary arteries. He also got his PEG tube changed to a "low profile" button (so excited about that!).

Dr. Kanter didn't balloon Micah's right pulmonary artery because it looked nice and large! The left pulmonary artery looked super small. Kanter ballooned it causing the lower left lung to be overwhelmed with the new blood flow. The capillaries leaked into the air sacs and now he needs to recover in the CICU. The riskiest part of this is when the blood flow transitioned from small to large. The pic below shows the before and after - there is way more blood flow toward the lower part of the lung.

Kanter also told us about a pseudo aneurysm about the size of a golf ball growing off the conduit. He suspects that the conduit tore a bit during the cath he had back in January. I don't think it's at risk for bursting but it does change the timeline for his next open heart surgery. We estimate his second surgery to be within the next six months. 

Lastly, Kanter coiled off three of Micah's remaining collateral arteries that weren't vital for blood flow to the lungs. Now Micah is collateral free! (Something that happens to most of us shortly after birth). 

I feel worried and taken aback at the news post-cath. My biggest fear is another larger tear and/or clotting. And we just found out that he didn't tolerate extubation after the cath so they'll try again in a few hours. If you remember last year's hospital stay, his breathing tube was the main thing that kept us for so long. The next 24-48 hours will keep us on our toes but I have faith that he will get through it so we can bring him home this weekend.

Monday, June 1, 2015

Happy First Birthday, Micah!

Yesterday was Micah's first birthday! I remembered the feeling of his pending arrival and how worried we were not knowing how the birth would go or how he might handle surviving outside of the womb. It took 4 long months of fighting in the hospital but he DID survive!! I can't tell you how overwhelmed with happiness and love I feel for Micah. He is such a blessing I can't believe he made it to his first year after all of the near-death experiences he faced. 

I honestly feel like this birthday is more like a celebration of survival and resilience. He is one of the happiest kids I know - his eyes literally sparkle when he smiles! 

Ray and I were talking about Micah's easygoing demeanor a few days ago and he said, "considering Micah's our medically complex child, he is a lot easier than Dylan was!" And thats saying something because Dylan was also an incredibly easygoing baby.

And to celebrate his birthday, we had a small family get together. I know he loved the attention but once he dipped his hand in the frosting he decided it was all too much. He cried but still managed a few bites of cake!

And now we're relaxing at the beach. I don't know if he's a natural beach baby but he sure is cute!

Tuesday, March 31, 2015

10 months old

So yesterday I braved the grocery store with my two year old and 10 month old. I was pretty nervous about the whole experience but we really needed groceries for the week and I hate going in the evenings because it cuts into my time with Ray.  Incredibly, both boys did amazing!! I had Micah in the sling - he's finally strong enough to tolerate supporting himself for an hour - and I let Dylan walk beside me. He served as my helper by throwing food (not so gently) into the cart.

Dylan's only moment of weakness was at the very end of our shopping. We had already picked out cookies from the bakery when an array of brightly colored cupcakes caught his eye. He stood innocently next to the cupcakes refusing to budge an inch. After much coaxing and a promise of a cookie in the car, we went to the check out.

As we were checking out, the cashier cooed at Micah and asked, "What a big baby!! What is he, 4-5 months old?" In any other scenario I might not mind the question but with Micah, when people ask how old he is and I tell them, they look confused and concerned about his size. So then to address their concerned look, I usually feel compelled to explain that he had a rough start with a 3.5 month hospital stay. This just concerns them more. So to avoid the whole concerned look, I said "Yes! He's 4-5 months old."

Am I horrible? I just hate explaining his situation to perfect strangers and I can't bare their looks of concern... So I lie. 

Here is a picture of my perfect-sized 10 month old. He's SO happy! I just love his little personality!!

Monday, March 2, 2015

9 months

Family life has been most excellent since Micah's been home. I don't even know where to begin because it's been FOREVER since I've blogged, so I'll start with today!

Dylan has become such a WONDERFUL big brother. Today when Micah woke up from his nap, I told Dylan, "Go get Micah!" Dylan ran upstairs and crawled into Micah's bed. I could see them on the baby monitor and Dylan was stroking Micah's cheek and talking to him. Then Micah started cracking up, doing his cute baby giggle, watching Dylan just talk. It was such a precious moment!

It was so hard to envision moments like this when we were in the hospital. My babies are so sweet together!

Here's a pic from a few weeks ago.

Micah has been doing awesome. In fact, tonight he was really rolling around and doing his baby sit ups. He wants to be mobile so bad! His rolling around is such a huge deal because he just started rolling over from front to back about two weeks ago. I think he'll be sitting by himself in about a month. What a big boy!! Here is his 9 month photo.

He's getting so chunky! We went to his 9 month check up today and he's actually on the curve! Yes, he's in the 1st and 2nd percentile but still! He is really thriving at home.

Ah, life is seriously so good right now. 

Also, I guess now is a good time announce that I put in my resignation at work. I'm going to stay home with my boys!! I'm so excited about this for so many reasons but most of all because it's something I've always wanted to try. I admit that I'm slightly terrified but I feel like it will be so rewarding.

Thursday, January 22, 2015

Cardiac catheterization

We're at Children's National Hospital
in DC waiting for Micah's cardiac catheterization. 

Laura got in plenty of snuggles and kisses this morning. 

It's comforting that this procedure is in DC the same day as the March for Life. There are lots of prayers for little babies just like Micah. 

I'll never forget having to forcefully tell doctors that we will not consider having our son aborted as an option.  We are continually focused on what we can do to give Micah a good life. As always, thanks for the prayers! We'll update everyone in a few hours. 

Update: After about a 3 hour wait, all went well!  Our doctor did some good ballooning of his right pulmonary arteries (and some to his left, as well). The before and after pictures look great.

Tuesday, January 6, 2015

Welcome 2015!


We made it.

2014 was the hardest year and the most rewarding.  We experienced some incredible hardships that prepared us for wonderful blessings.

I'm a program manager so I like to speak in bullet points. Here's a recap of the year by months.
  • January: went from care-free "power couple" excited to learn the gender of our second born to despairing bloggers.
  • February: coping with Micah's disease and deciding, why not, lets fix up our condo and try moving. 
  • March: deciding on Children's hospital over Inova. Aka, deciding that commuting to DC isn't so bad... right?..?
  • April: Sold our condo and decided to move to Bristow (aka "the country", "not Manassas", and "you know where Jiffy Lube Live is, right?") the land where nearly everyone is a commuter with small children.  Ray took the GMATs for MBA school.
  • May: Moved.  Dylan started a new daycare (and got bit twice on the first day). Met many wonderful neighbors and love being close/really close to the grandparents. Micah is born!
  • June: Doctors, open heart surgery, extubation, commuting, oh my!  Also, a LinkedIn message worth it's weight in gold.
  • July: ECMO and the beginning of the comeback story. 
  • August: Micah starts kicking butt and is extubated and sent from the ICU to the HKU.  Ray starts the first classes at the WSU Online MBA program.
  • September: Micah came home after 109 days in the hospital. Finally!
  • October: Our 4 year anniversary of our marriage on 10/16/10.  Micah's cheeks continue to grow.
  • November: Ray started a job at Google in Reston, Va.  Dylan's second birthday.  Micah's cheeks continue to grow.
  • December:  Micah's cardiac catheterization (aka the "mini surgery" postponed until the new year).  Laura graduated from her Master's program at GMU.  Micah is becoming quite the sitter.

The past few weeks have been awesome for Micah's development. Aide from the looming cardiac catheterization that was bumped because there were no open beds in the CICU and bumped again because he got sick, we really can't complain.  It still hasn't been rescheduled and is still looming, but we've been able to work with him a lot on sitting, eating and tummy time.  

2014 is a year to remember - our family grew by one and we all grew closer.  We're so thankful for all the prayers, views of our blog (over 36k!) and generosity over the year.  I have a feeling 2015 will bring many more blessings.

Thanks be to God!