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

From CICU to HKU!!!

I am on cloud nine right now! Micah has left the CICU and is in the step down unit where he will hopefully learn how to drink from a bottle, be weaned off his nasal cannula and I will learn how to care for him when we go home... Home!!

HOME!!! I try not to get too excited but it's just within reach!

Last day in our CICU room!

New room in the HKU (step down unit)

With a view of the Basilica of the National Shrine of the Immaculate Conception off in the distance!

Micah is so amazing and I truly thank everyone for their constant prayers to our Heavenly Father. Micah is my miracle baby. He survived several bouts of dangerously low sats, open heart surgery, CPR, and ECMO. I know he has several more battles to fight, but I've learned that I must rejoice in the present and give my worries about the future to God.

I wasn't sure if we'd need help with medical expenses but we're starting to receive medical bills from Micah's labs and his many specialists during his 13+ weeks in the hospital. I am so appreciative of your continued prayers but if you would also like to donate, my beautiful friend Brandy set up a site for donations:

http://www.gofundme.com/9butsc

Thank you again everyone for letting me and Ray continue to share Micah's journey with you. The support our family has received amazes me everyday.

Extubated!!!!!!

I am so thrilled about today! Micah was extubated around 11:00am and he's done such a fabulous job all day! I pray he keeps it up. Here are a bunch of pictures :)

Micah immediately after being extubated.

Family photo, missing Little D though!

Napping in my arms. SO SWEET!

Bath time!!!! My first time helping wash Micah with actual baby soap!!

Fauxhawk during bath time :)

Fell asleep during tummy time after his bath.

It's so incredible to see him do normal baby things, like sneezing, hearing his (scratchy) voice cry, getting a bath, and sucking his pacifier!! YES! He is sucking his pacifier! I'm totally amazed at today's events. He's breathing like a champ and sucking like a champ. 

Good job, Micah. We're really proud of you!

Full Feeds: 74 Days and Counting

Micah's been doing really well. Last week Hematology found a small clot in his left leg. I wasn't really surprised given that the nurses haven't been able to get blood pressure readings when the cuff is on that leg. He's on a two week blood thinning treatment to see if that will help.

He's finally at full feeds today! He's taking in 18mLs of breast milk per hour. Praise God! It felt like we'd never make it.

Now that he's at full feeds and has put on a bit of weight, the doctors want to begin pressure support trials this afternoon. A pressure support trial is when the vent settings are turned down as low as possible and they observe how Micah is able to maintain O2 saturation and expel CO2. Pray for good trials!

I'm pretty hopeful at this point. They already have the vent at minimal settings and he's been breathing above the rate per minute even when he's sleeping. The Fellow wanted to try to extubate on Friday but the Attending said to wait until Monday to ensure that he continues to gain weight. 

I'm anxious to get this tube out of Micah! It's causing his skin to break down inside his nose which makes him seriously agitated whenever the tube is moved or even slightly touched. He cries and cries, holds his breath, and his face becomes red like a tomato! When he gets this agitated the nurses (depending on their experience with Micah) tend to run straight for a dose of morphine to calm him down. When he's sedated he doesn't breathe as well on the vent. I hate these dumb cycles that seem to happen when we're waiting for a major milestone to happen.

I'm just really thankful that he's been progressing though. I think the next step will be learning how to eat again. Whenever we put a pacifier in his mouth he gags. He doesn't remember how to suck on it. If he can't handle a pacifier in his mouth, then his suck and swallow coordination will be probably be non existent. Who knows how long that'll take to fix. I just have to take it one day at a time, no matter how much I pray and wish for us all to be home together doing 'normal' family things.

Sometimes it's difficult to stay positive in the CICU. Yesterday one of our CICU friends lost their baby to CHD. This is the fourth loss we've seen in our 11 weeks here. Please pray that this family receives God's strength and comfort during this time. This family, and many others like them, has experienced one of my greatest fears. It's so unfair that these little angels are put in our lives just to fight CHD and be taken away so soon. Everyday is a fight for life with these children and the only thing we as parents can do is be there to provide support and advocate for them, which never seems like enough.

I love you so much Micah and I'm so thankful for each day we can be together on this earth.