Micah Laughs

We've been enjoying the Thanksgiving holiday.  We're spending time with family instead of commuting and working.  We love it!  Here is a quick video of Micah laughing.

Shots shots shots!

Captain's log. It's 10 AM on a Sunday morning. Lost track of the days on the voyage.  I'm attempting to use Siri to dictate this blog post as I walk around holding Micah. I have his feeds in a backpack so that I can keep moving to prevent him from crying. Dylan is - currently - calmly watching Frozen and eating a muffin. (Wait, he just sneezed and had a snot incident.) Laura is taking a much needed nap. Actually, she just work up! Back to typing.

The four of us have been sick the past few days. Dylan got it first, then me, then Laura and Micah. Dylan seems to have passed over the peak, but Micah looks like he is just getting the worst of it. It's basically a cough, sore throat and occasional fevers...(with a gag induced vomit here and there, the usual stuff). 

With everything we've gone through up to this point... This is nothing... I wish. I'm sure every other parent that's reading this knows what we're going through. Misery. The adjective is miserable. I'm too sick and tired to have energy to help the sick kids who only have energy to cry because they're tired. We all need more sleep.  6PM yesterday was an exciting family moment: almost bed time. 

In spite of all this, I really want to post a blog because Friday was the last day Micah needed a shot for a leg clot.  Ever since coming home (9/17/14, 38 days later), we needed to give Micah two shots a day to prevent his clot in his left leg from getting worse and (hopefully) remove it. The clot came from his first cardiac catheterization, back in his first week of life. He hasn't required shots everyday, just since he was at home. Giving your sick baby a shot twice a day is just about exactly as difficult as it sounds. It's not easier than you would think or worse. Just bad, sad, fleeting yet discouraging. I am so thankful and relieved to be done with those shots. 

I know what you're thinking, isn't Micah going in for another cardiac cathedration at the end of next month? (Ok, maybe that was just me thinking that). As awesome as healthcare technology is, Laura and I need to be totally ontop of everything. There is no way I'm going to let a doctor say, "this procedure has a minute risk of clotting" without reminding them that Laura and I had to give our son nearly 80 shots due to a clot.  It's incredible how discussions of risks are trivialized on the front end of procedures. Anyways, Laura and I have learned our lesson: no risk is too small to be ignored. 

On the other hand, the cardiac cathedration that Micah requires at the end of the month is the same procedure that saved his life while he was on life support (ECMO). They will use a small tube to inflate his narrowed arteries that extend off his pulmonary conduit towards his lungs. Though we don't have a fixed timeline on how long we will be in the hospital or when his next surgery/procedure will be, we're confident this will last him for a number of months. 

Here's a photo of his last shot. (Spider-Man bandaid)

Our 4 year anniversary

It's 3AM the morning after our 4th wedding anniversary (10/16/10). I just finished restarting Micah's feeds and giving him his medicine. Laura and I shared a wonderful day working from home together and watching Micah (who sleeps so much these days!). Laura's wonderful (brave?) mother came to watch both the kids this evening so that we could go out for dinner. 

Life is so great today!  Laura wrote an amazing card about this past year. We had a great time talking and relaxing at some local spots. Anniversaries are a great reminder to reflect and remember.  

We live in a broken world, but there is love. 

These past few weeks have been wonderful with our family under one roof. I am so thankful for our supportive friends, family and people we only talk to on the Internet.  Everyone we encounter makes a difference, ranging from a small conversation to bringing us food to praying/sending good thoughts to spending time with us. 

All this time, praying has made a huge difference for me.  Sometimes I pray out of fear. Sometimes I pray out of thanks.  It's useful to me across the gamut. 

Micah is planned to have a cath lab for an orthoscopic ballooning of his arteries (similar to what he had that saved him from being on ECMO a number of weeks ago) in late November.  Dr. Donofrio moved back the planned procedure (from early Nov to late Nov) due to how well Micah has been doing. 

Thanks again for reading! We have some photos from our wedding day on the "about" section on this blog.

Complete

This last week has been CRAZY and full of firsts with Micah. Crazy because Micah had a random fever of 101.8 and the cardiologist wanted him to come in for observation. Luckily he fever subsided and we left less than 24 hours later.

Aside from the annoying hospital stay, some of his firsts included his first bath in a real tub, his first time to Mass, his first time living in Virginia. He's been such a little sweetie. He sleeps through the night (though I don't know what baby wouldn't when you have a stream of continuous feeds filling your belly).

Dylan on the other hand is having a difficult time adjusting to life with a little baby around. Dylan comes home from daycare and immediately runs into the living room to see if the baby is still swinging in it's swing, Dylan wants to be held by whichever parent is currently tending to the baby, Dylan wants to sleep with us because the baby sleeps in out room, etc. A few nights ago, my saint of a husband tried to calm our screaming (almost) 2 year old who hasn't been sleeping through the night. I'm more worried about Dylan waking Micah than vice versa. I wish we could explain who Micah is to him and that we love him just as much as before there was a new baby around. 

We're making slow progress though... I think I reached a milestone with Dylan tonight. He has only been wanting Ray to give him his night time bottle and put him to bed (it breaks my heart because bed and bottle time is cuddle time!). Well tonight I put on a sad face when he took his bottle out of my hands and walked over to Ray with it. Dylan looked at me, tilted his head, and gently said a string of incoherent words that I THINK was supposed to comfort me (aww). So I walked over to him and he let me give him his bottle and put him to bed!! Yay!!

Despite the craziness around here, I've never been happier and felt so proud. I feel like our new house is beginning to feel like a home. All four of us under one roof, doing normal family things. It seems so simple but it's so fulfilling. I love my family so much. I don't know how I was so blessed with such beautiful boys.

Micah is coming home

Micah's 109th day will close with our family under one roof!  We're taking him home tonight, after we get everything checked off.

I don't know the best way to describe how happy and thankful I am.  Micah can finally have a home. Dylan can have both of his parents (and a cute new brother).

One of the most difficult things for Laura and I has been to watch our children's pain.  If I could, I would take on all the pain and more, to make it easier for them.  It would tear my heart when Dylan would cry for momma in the middle of the night or when Micah would cry in pain from his surgeries.

Thankfully, the worst is over!  We'll can finally start enjoying family moments together.  Thanks for all the prayers!

Hooked on a Feeling

It's about 11PM on Thursday night, a pretty standard evening at the HKU.  With as easy as it is to get worked up, overwhelmed, exhausted, tired and frustrated, I wanted to take a moment to remind myself that it's not always like that.  Some days are great.

Today, Micah is alive.
Today, he's been alert, smiling, and loving his pacifier.
Today, Micah's been sleeping with oxygen saturations in the high 80's.
Today, Laura and I went on a date for the first time in weeks. (Had drinks during lunch and saw Guardians of the Galaxy).
Today, I was able to join in on a virtual class for my MBA program.
Today, we've received an incredibly generous amount of money from our good friends and family.
Today, we've got "Gtube (then come back to HKU)" written on our plan board for tomorrow.

I know that there are some future parents out there who will read this blog, hoping to find some kind of solace.  When Laura and I found out about Micah's CHD before he was born, we searched for people who would share their story. We searched for parents who had children with a similar situation. We wanted information, we wanted to know we weren't alone, we wanted to know that there are real stories behind the diseases that was infiltrating our lives.

Early on, it felt like we went from preparing to have a baby to preparing to battle a statistic, a number, a deletion.  Imagine reading that CHD's are the leading cause of infant deaths...or that 1 in 250 babies have a heart disease... or that only recently 50% of CHD survivors are adults... or that a CHD will most likely lead to an invasive surgery in the child's life (Micah - of course - will have multiple).  Terrifying stuff that fills your mind instantly.  Out goes "what color should his room be?" and in floods "how can I explain to Dylan that ...  " (you get the idea).

All too easy, suffering overwhelms. It's easy to be frustrated. It's easy to place blame. It takes effort to be happy.

Some days, just mustering up the ability to "hang in there" will take all you've got!

But remember this: suffering doesn't make happiness worse.  If anything, it's sweeter.  When you're going through trouble, don't try to be a superhero.  Don't think you need to be happy. Don't compare yourself to an ideal standard.  But don't write yourself off.  Keep going, and be ready.  Your moment will come - your day will come - and it will be great.

It will be that "old song in your head, drifting off to sleep" feeling.  It will be that "smiling as you remember that kiss" feeling. It will be that "driving down the road, something sparks your memory, you laugh before the moment even comes to your mind" feeling.  It's that "mildly humorous story you tell a good friend, who finds it hilarious and you laugh along too" feeling.  It will be that "I can't believe this little fat-cheek baby is so stinking cute and breathing at 83% oxygen" feeling!

100 Days

Today is Micah's 100th day at Children's. I'm so happy about his progress... but I'm so exhausted.

Micah's feeds via bottle haven't been progressing rapidly enough. Last week Dr. Jonas stopped by and recommended Micah get a g-tube to deliver feeds so we could go home sooner. A g-tube is basically a tube that allows him to receive feeds directly into his stomach through his abdomen. I was so happy to hear that we could go home to work on feeds if we got a g-tube! 

But then Micah started throwing up over the weekend and no one knows why! We thought it was his inability to tolerate a high volume in a short amount of time, so they increased the time, decreased the volume and he still threw up. We thought it was withdraw from his meds, but then decided that wasn't it bc he wasn't exhibiting any other withdraw symptoms. Then I thought it was because they increased the calories per ounce (with a supplement), but the nurses don't seem to agree. Someone suggested it could be a stomac bug. So now we're back to the volume of feeds. He's at the lowest volume per hour but he threw up again! I don't know what is going on with him.

Also, Jonas said Micah would have to come back for another cath in November. I hope we get to go home before then.

Despite him throwing up (I'm convinced it's the additional calories they added on Friday), Micah seems stable enough that I feel like I could take better care of him at home than the nurses can at the hospital. I feel exhausted being at the hospital all the time. I miss my husband. I miss Dylan. I'm stressed about the prospect of returning to work. I just want the four of us to be under one roof. I don't know, it's just one of those days...

All bundled and finally asleep after a rough day of throwing up.

Cool little dude. He's such a trooper to only have one parent around at a time.

If you feel compelled, we'd appreciate any amount: http://www.gofundme.com/9butsc