Friday, December 12, 2014

Flexibility

It's good to be flexible and understanding as parents. Micah's procedure got bumped to Tuesday because the hospital is at capacity.  The CICU is full of patients and our Doctor didn't want to run the risk of Micah needing a bed but unable to obtain one.

It's nice to be the parents of a baby who is not in critical condition. More will come on Tuesday, until then, we're happy to have a weekend free of plans. 

Micah's Third Cardiac Catheterization

Micah has an outpatient cardiac catheterization this morning at Children's hospital in DC. We're waiting for the nurses to come in. Send prayers our way. 

Micah's pulmonary arteries that connect to his conduit need to be expanded. The doctor will balloon the narrowings related to both by scar tissue and the difficult nature of his open heart surgery. Micah has been awesome since his last catheterization (July) and we're confident that he will recover quickly. 

Update: Micah's catheterization was, eventually, rescheduled to Jan 22.

Saturday, November 29, 2014

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.





Sunday, October 26, 2014

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)




Friday, October 17, 2014

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.

Thursday, September 25, 2014

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.

Wednesday, September 17, 2014

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!

Thursday, September 11, 2014

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!



Monday, September 8, 2014

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

Thursday, August 28, 2014

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:


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.


Monday, August 18, 2014

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!

Wednesday, August 13, 2014

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.

Thursday, July 31, 2014

Two Months Old!

Micah is 2 months old today!!  I think he can officially be dubbed a Washingtonian.  He weighed in at 8lbs 2oz. Still so little! Here's a picture of the little guy :)


The doctors restarted his feeds last Thursday and today we are up to 5mLs per hour. So proud! 

We had a slight hiccup this morning. He randomly vomited just as his physical therapist was unwrapping his swaddle. The nurse notified the doctor and the doctor said if he does it again then they need to stop the feeds. So of course, he threw up for a second time! They turned off his feeds. It was hard to watch because it's taken us so long to get him up to a measly 5mLs! Also, I didn't see how stopping feeds would prevent him from vomiting again as his vomit was all bile and his feeds are going directly into his intestines.

I brought up my concerns to the nurse and she agreed with me. Then she suspected that he's still withdrawing even though they increased his methadone dose. The doctor said to reassess him after an hour. If he hasn't thrown up then we might be able to restart feeds at 5mL again. It's been 2 hours, he's doing great, and they just restarted his feeds! Woo!

The doctors also said they wouldn't try taking Micah off the vent again until he is at full feeds, 18 mLs per hour. Who knows when that'll be!

Still no timeline for coming home. I've decided Micah likes to take his sweet time. And I've been making friends with other CICU moms - it makes things a bit easier around here. 

Anyways, Dylan and I are feeling much better. Thanks everyone for the continued prayers :)


Wednesday, July 23, 2014

Breathing Tube and Feeds

This week has been somewhat uneventful but Micah hasn't been progressing as smoothly as we'd like. Micah, who hasn't had any food in his stomach for over two weeks, was reintroduced to breast milk on Monday via feeding tube directly to his belly. They started him at 1mL/hr. He seemed to be tolerating it so they increased it to 2mL/hr on Tuesday. 

The doctors stopped feeding him by Tuesday night because his intestinal NIRS (his NIRS monitors oxygen saturation of his brain, kidneys and intestines) were steadily declining. By this morning, Micah was a dusky gray color, he still hadn't had a stool, and his NIRS were low enough to cause concern among the nurses and doctors.

They ordered an x-ray of his intestines and planned to give Micah a suppository. Thankfully, the x-ray was normal and by the time the doctors notified us, Micah had pooped (before they gave him the suppository; and there was no blood!) and his intestinal NIRS we're picking up good oxygenation.

The doctors concluded that Micah wasn't tolerating his feeds and that they'd have to approach it much more slowly over the next few days.

Separately, we're having trouble weaning him from the breathing tube. Micah was on versed (pronounced ver-said) and morphine for anxiety and pain relief. In order to wean him from those drugs, they used methadone and ativan to help with his withdrawals. Now he's only on methadone and ativan, but both of those drugs make him too relaxed to breath above his vent. For example, the vent gives him 15 breaths per minute, and the doctors expect Micah to take an additional 15 breaths, however, Micah is not taking any additional breaths. And now he's going into withdrawal from the ativan and methadone! The doctors are still trying to find a good balance between relaxation and independent breathing...

Also, Dylan and I have come down with some sort of illness. Dylan came home from daycare today with a crazy fever, a cough, and a swollen/oozy eye. I just have a sore throat and a bad headache. I hate to be sick because I don't want to pass anything to Micah :( I've heard it before and I'll go ahead and repeat it; parents shouldn't be allowed to get sick.

Anyways, keep praying for us!

PS: This is a special thank you to everyone who has brought us a meal. You have no idea how much of a time saver it's been in the evenings and the left overs are perfect for lunch at the hospital. So THANK YOU! :)

PPS: Please pray for our small friend Caleb who will be going into surgery tomorrow.

Friday, July 18, 2014

Progress After 48 Days in the CICU

This past week has been so awesome! Micah has been progressing wonderfully since he had his second cath and was removed from ECMO. 

His stools have been blood-free and his X-rays indicate he doesn't have NEC anymore. His antibiotic treatment ends Sunday which means they plan to reintroduce breast milk via feeding tube on Monday!!

The doctors tried to extubate him on Monday. His heart rate remained stable, blood pressure was stable, O2 sats looked great but his breathing was labored and quick and his CO2 levels were too high. He began to look a little purplish and after about 30 minutes they decided to reintubate him. They determined his heart function is great but his lungs need more time to develop and get stronger (which is why I'm so excited about starting feeds on Monday!). It seems like a set back but I'll take it!

Since then he's been super alert and they've LET US HOLD HIM EVERYDAY!! Sooo good for my soul <3 Also, they've weaned his vent settings, his arterial line (which monitored his blood pressure in an artery in his wrist) was removed, and his milrinone and morphine drips were stopped! They also did another test today where they turned off his vent (without removing the breathing tube) and he passed, which is huge!

I feel like I'm seeing a speck of light at the end of this dark tunnel. I'm afraid to get too excited though. But the thought of finally bringing him home is just too good not to think about.


Thursday, July 10, 2014

Micah is off ECMO

Last Monday evening the doctors gave the go ahead to wean Micah off ECMO.  Laura and I were really excited, but also felt concerned about the doctor's hopefulness.  We couldn't help but feel they were deciding to wean the ECMO simply because there wasn't any other better option of what to do. After multiple attempts at weaning the vent, I was prepared for the wean to go poorly.  Laura was at the hospital and sent me nearly hourly updates.  Each hour, they turned down the amount of work that the ECMO machine does in pumping and oxygenating his blood - while monitoring Micah's oxygen and heart beat.  Every hour progressed just fine and by the next morning he had successfully weaned to the lowest settings and still maintained solid oxygen levels.  At some point prior to the morning x-ray, part of Micah's lung collapsed (pneumothorax).  I definitely felt that this would cause a delay/cancellation of the decannulation (removing ECMO entirely) - but the doctors were able to remove the air that was between his lung and chest cavity and they didn't cancel the decannulation.  The last step was to have the surgical team remove the cannulas (tubes) from his neck.

After waiting around all day and being bumped in line, the surgical team came and performed their job.  Laura and I waited in the family waiting room for the surgeon to contact us.  Sure enough, everything went fine and Micah was stable. 

Micah's now been successfully off ECMO for a few days and they are even beginning to wean his ventilator.  The vent really helps keep his oxygen saturation levels high, but it also prevents us from holding him.  Even though in some ways, we are back to where we were a couple weeks ago, we are so thankful to be off ECMO.  There are so many risks involved.  Micah had a couple of clot scares and the recent development of blood in his stools could be from the ECMO machine.  We were talking to another couple at the CICU who said their baby, while on ECMO, was at a major risk of needing a foot amputated.  For some reason, there was no blood circulating to their baby's foot.  Thankfully, the doctors allowed a last ditch effort to get off the ECMO machine - which worked. 

Our main concerns now are the blood in his stool.  The concern is that he may have early symptoms of necrotizing entercolitis (NEC).  Hopefully the antibiotics will work and it doesn't escalate. 

Now that we're back on the vent, if everything goes well, we could be off the vent in about a week, be removed from the CICU and sent to their "step down unit" in the HKU (heart and kidney unit) in about 2 weeks and then sent home in about 3.  Micah's finally able to move around and interact with us.  It's very difficult to be a family divided like this.  I can't wait for the 4 of us to be at home, for Dylan to see Micah again and for Micah to grow and be healthy.  

Micah's already over a month old, but looks like he's still a newborn.  Here's a photo of Dylan and Micah at the same age. 



Thank you for the prayers and support.  Laura and I are amazed by how large our prayer network is.  The meal deliveries are wonderful as well. 

Monday, July 7, 2014

Weaning Off ECMO?

The last few days, and especially the first part of today, felt really discouraging. Shortly after Micah's cath on Thursday we were originally told they'd want to start weaning him off ECMO on Saturday. Saturday morning rolled around and they told us that Micah's surgeon, Dr. Jonas wanted to delay weaning until Monday in order to allow his collapsed lung to rest more. A few hours later we were told that Dr. Jonas decided his PAs still looked too small and they'd want to keep Micah on ECMO for a few days after Monday. How frustrating!!!!

Besides that, the weekend was pretty uneventful.  Ray had a conversation with Dr. Futterman (an ICU attending) about the factors of weaning the ECMO. One thought that really sticks out is when he said, "Micah has a tendency to get worse over time." 

Then last night around 2:30am when I called the nurse to check on Micah, he told me Micah had blood in his stool. They were, and still are, concerned that he might have NEC (a serious infection of the intestines). He's on antibiotics and they're monitoring his abdomen for hardness and discoloration and they'll continue to monitor his stool.

So when Ray and I got to the hospital this morning we were feeling super discouraged about everything. Micah's condition just slowly seemed to be deteriorating.

To top off our seriously discouraged moods, we had a conversation with his Cardiologist, Dr. Donofrio about what they planned to discuss at the Surgical Conference today. I asked her to be frank with us about Micah's condition and she said "Micah's a very sick baby and it is possible he could die." I've always known from the beginning that that was a possibility but actually hearing it was very difficult. I felt very hopeless and began Googling other blogs about babies who never made it off ECMO. 

Probably not the best idea.

The Surgical Conference ended at 6pm and Dr. Donofrio found us afterwards to give us the update. She said all of Micah's doctors looked at images from his cath along with images from an echo they performed earlier today. They were pleased with the images and all agreed that Micah can start to be weaned off ECMO tonight! Praise God! I'm afraid to get excited because multiple doctors are hesitant to take this step... But it does give me hope!

Anyways that's the latest. I can't believe the number of emotions I'm capable of feeling in one day. Hopefully tonight's weaning goes well!




Thursday, July 3, 2014

2nd Cath Procedure

Thank you everyone for your prayers. I think they are working! Today was a pretty hectic day. Early this morning the doctors had scheduled Micah for a cath procedure at noon. At 11:30am the ECMO specialist noticed a small clot starting to form on the arterial cannula (the tube that carries oxygenated blood from the ECMO machine to his body). Clotting (as well as hemorrhaging) is one if the major risks associated with being on ECMO. So the doctors decided they needed to remove the clot and they made me leave the room for the process.

A doctor had come to the waiting room to notify me that they successfully removed the clot. They also mentioned that while they removed the clot, Micah had desatted to the 40s, but only very briefly. This desat just reinforced the importance of trying to find out why this was happening.

The cath procedure was pushed back to 3pm. They took him to another floor in the hospital (which for us presented a scare in itself - Micah doesn't do well with in transport). He made it safely to the cath lab and the procedure was underway. About an hour and a half later the procedure was over and the doctor told us he found severe stenosis (narrowing) of the conduit due to scar tissue. They expanded it with a balloon procedure and now there is much better (but not perfect) blood flow to the lungs. 

Yay!! We were both so relieved and happy and excited that something had actually gone right!

In our moment of happiness the doctor reminded us that the scar tissue could regrow and he could need another cath. We could deal with that because at least we KNOW what the issue is.

Also (drum roll) they said they hope to have Micah OFF ECMO by Saturday!!!!!!!! That was music to my ears. I really hope and pray he is stable enough to come off that machine. As thankful as I am for it's life support, I am terrified of Micah hemorrhaging or having a stroke. 

By the time Micah was situated in his room it was 7pm. Ray and I both decided the last two days were enough excitement for us and so we headed home.

About an hour after we left we got a call from another doctor who informed us that there is air in his chest cavity and it caused his right lung to collapse. They'd need to put in a chest tube to remove the air and re-inflate the lung. Thankfully they don't think it'll delay Micah from getting off ECMO.

You win some, you lose some. But I feel like today was an overall success and I'm SO looking forward to getting Micah off the ECMO machine!

Thank you all again for the kind words and messages!!

Wednesday, July 2, 2014

Prayers Needed

Things in the CICU change so fast. 

About 20 minutes after I posted my last blog, Micah began to desat down to the 30s. During the first desat, the nurse and the respiratory therapist were able to bring his saturations back up. Five minutes after they left the room, he desatted again. They brought him back up but it took more time and a few more hands. It happened for a third time and I found myself in a room full of doctors and nurses.

Next thing I know I'm speaking with the director of the CICU, Dr. Berger. He's explaining that Micah is unable to keep his saturations up without constant intervention. They had to give him epinephrine and bicarbonate to artificially raise his blood pressure to push blood to his lungs.

They ordered an x-ray to ensure correct placement of his breathing tube and ordered an echocardiogram to analyze the function of his heart. I could hardly believe the room could fit anymore people or machines. The x-ray results were good.

I became irritated because doctors and nurses would speak in low voices to each other with their backs turned towards me. I kept hearing, "cathetarization" and "unable to maintain levels." I tried to ignore them by looking at Micah who seemed to be growing paler by the minute. Looking at him made me want to fall apart and I really wanted to keep it together until I knew the plan.

Every so often a doctor would come up to me and brief me about what was going on. Finally a surgeon, Dr. Nath, approaches me and says that Micah is unable to stabilize himself and they have to put him on ECMO.

My heart just sank and I began to cry.

ECMO is a heart and lung bypass machine. It's a machine that provides temporary life support. I don't want to explain it here, so you can Google it if you'd like, but it's basically a last resort when the heart and/or lungs aren't functioning properly.

I spoke with Dr. Donofrio who explained that the echocardiogram showed a narrowing of the conduit leading to his pulmonary arteries. As a result, blood flow to the lungs isn't good and they would need to perform a cathetarization to confirm the results of the echo. He'll probably get a cath in the next 24-36 hours and if all goes well we can begin weaning him off ECMO.

It's unbelievable how quickly things can go bad. I feel terrible. I can't even imagine how Micah must feel. Please pray that the risks associated with being put on ECMO are avoided and pray for a quick and safe weaning from the machine.

It's hard for me to comprehend that I have one child on life support and one completely healthy child at home. Why?

:'(

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Micah's a Puzzle

Medical Update

We're still at the hospital. No timeline for coming home (because that's the second question everyone always asks - first question is, "how is Micah"). 

Yesterday the nurse noticed that Micah was twitching his arms and legs in unison for 6-10 seconds. There is concern that this could be behavior indicative of a seizure so they've attached an EEG to his head to record his brain activity until tomorrow morning. I pray that it was just normal neuro development movements... 

Here's a picture of his little head wrap, he's so cute!



Micah continues to baffle the doctors. This morning we had a family meeting with the ICU attending and fellow, the neurologist, and the cardiologist.

Micah had an MRI on Friday, June 27. The neurologist said his MRI results didn't indicate any major problems and that the abnormalities she found are common for cardiac babies:

1. There are tiny dots present on the left side of his brain. They could either be blood clots or the result of low blood pressure not sending enough blood/oxygen to those parts of the brain. The dots are so tiny (and common) that they don't present any serious concerns. The doctor did mention that Micah could have slower use of the right side of his body... But maybe not.
2. His brain is measuring slightly smaller than an average size brain at his age. Also common and not a concern.
3. The pons, a portion of his brain stem that serves as the "message station", is measuring slightly smaller, but it could be that it's proportionally small to the overall smallness of his brain. They'll monitor it.

His breathing vent has been adjusted to provide even more support... Finally the ICU doctors admitted today that Micah has been on the vent for about a week or two longer than they like to see. So they've been planning next steps to figure out why.

First, they're going to put a scope down his windpipe to see if it has any weak spots. If results are normal then they're going to wait a few weeks and perform another cath to identify and measure the pathways of the blood flow in his heart. They have to wait a few weeks because his heart is still too fresh from surgery to insert a stent if needed. If his cath results are normal then they might consider steroids.

The good news is that he doesn't have any more tubes or wires protruding from his chest, his stitches from surgery have been removed, and he isn't on any medication to help the function of his heart :) 

We just have to figure out the breathing and oxygen saturation issues.

Friday, June 27, 2014

Not Getting Easier

I felt incredibly frustrated today. Micah's sats regularly fluctuate between the 60s and the low 90s. The fluctuation has been totally stumping the doctors. Today his sats have been in the 50s and 60s. His worsening state is causing the doctors to: turn UP the oxygen and positive pressure on his breathing vent, give him new medication (atrovent) for what they THINK is bronchomalacia (weak and flaccid bronchial tubes), and give him what seems like the 100th red blood cell transfusion to help carry more oxygen in his blood.

For over a week now the doctors and nurses have been attempting to take Micah off his breathing tube. Everyday seems like the same thing, "His sats look great! Let's wean the vent" and "His sats are in the 60s, let's increase oxygen", "his levels are great again! Let's wean the vent" and "hm, his levels are troubling, we might need to get an ENT specialist to do a scope of his bronchial tubes"... 

Now it's been about two days since they've tried turning off his vent to see if he can breath sufficiently on his own. I feel like we're going backwards. I feel like we're always going to be stuck at the hospital battling complications caused by something unknown.

Over the last week I've been feeling insanely jealous and heartsick when I see pictures of my friends with their healthy newborns. Their babies look perfect and beautiful. When I look at Micah, he is perfect and beautiful and I find I have to actively remind myself that he's sick and needs his team of medical professionals. It's still so unbelievable to me. Even with this reminder, everyday Ray and I say to each other, "I can't wait until we can bring Micah home." 

I'd give anything to have him wake me several times through the night to eat, to change his diapers, give him a bath, dress him in baby clothes, smell his sweet baby skin whenever I want, hold him... Not only and I missing out on this time in his life, but he is missing out. This point in my life doesn't seem real.

I just need to work on being more prayerful, more thankful, and more patient...

I love you, Micah.

Friday, June 13, 2014

First Surgery

Micah had his first open heart surgery when he was 12 days old, on June 11th.

In a nutshell, his surgery went fairly well and he's doing solid since then.  He hasn't had any crisis moments since the surgery and he seems to be progressing at a good pace.

We had the most renowned doctor in the building on Micah's case. Dr. Jonas explained the procedure and the risks.  Micah's surgery was on the far end of the spectrum for Tetralogy of Fallot patients.  Putting a donated conduit (and valve) in Micah's right ventricle to connect to his two little pulmonary arteries had a success rate of about 90%.  Laura and I like when doctors are straight up with the negative information.  A few doctors (usually the genetic ones) will try to slowly ease the information on you, with worried looks and too many pauses for "do you have any questions?"  Just give it to us straight.  Laura and I are too far gone to get worked up about every piece of bad news.  There's a saying "you can tell the size of a man by the size of the things that make him mad."  Maybe it just feels belittling when someone is assuming that we're going to go for an emotional spin if they give us news about Micah.

Dr. Jonas debriefed us saying that Micah did well and that he found that Micah has only one coronary artery.  Coronary arteries (usually there are two) are small enough to not show up in the echo and cath lab images.  When he was telling us this information, it reminded me of a movie scene where someone imparts secret information, saying, "This will be well documented in the reports, but you must remember this information - as it will be critical to all of his future surgeries."  In order to keep the 1 coronary artery in tact, he placed the conduit lower in Micah's right ventricle.  I'm pretty sure that if something had damaged his coronary artery, he would have had a heart attack.  Due to some swelling, they left his chest open after surgery.  The image of Micah after his surgery - with tubes, swelling, pale and seeing his little heart thumping - is definitely burned into memory.

Prior to the surgery, we had a lot of ups and downs with is oxygen (and even his heart rate at one point). Because of this, his surgery was scheduled early.  We found out that there aren't a lot of benefits to having the surgery later (say, 1 month old) instead of earlier.  One of the doctors confessed that it's often most helpful to the parents, so that they aren't thrown right into worrying about their baby during surgery.  We were also told that the day after surgery and the following days (or even weeks/months) could be very rocky.  That saying "things will get much worse before they get better" keeps popping into my head.  But, we've been with Micah each day, and even though it's terrible to see him motionless, puffy, pale, connected to more tubes, his blood flowing through tubes and his chest open - he seems to be doing really well.  We're in an all out wait mode.  Just happy to see each day go by as he keeps progressing.

The goal for now is to see his swelling go down and to close his chest tomorrow morning.

Even if we may seem tough and whatever, I know I've had a mental attitude of "don't give up" and "hang in there." At times, I've strove to turn the corner and be more optimistic, enthusiastic and joyful - because I know we need it, as a family and in general.  It's very easy to be 100% present with Dylan - play with him, talk in his nonsense way about trucks, balls and water, read to him and get him to eat things other than muffins - but it's a lot harder with everyone else.  Laura and I have our own ebb and flow of emotions, but we are supportive and understanding of each other.  As crazy as all of this is, every day with Laura in my life is wonderful.

I haven't held Micah in like a week. The last time I saw his eyes open, I was on pins and needles that his oxygen would sink.  He's basically in a coma and doesn't look like himself.  I joking posted on facebook about how I love Micah's cry and how annoying other babies' cries are.  Now I don't mind their cries at all. It reminds me of how much I would love to hear Micah's voice.

Sunday, June 8, 2014

Extubation, Baptism and a Free Dog?

Today seems to be a good day for Micah. Thankfully a very aggressive doctor was on staff last night who was instant upon taking Micah's breathing tube out and starting bottle feeds as soon as possible.

I tried feeding him this morning and he isn't swallowing quite the same as before the tube went in. I think he has a sore throat. Poor little guy.

And the nurses... I feel like I have a love/hate relationship with them. Some nurses are way too hands on. They have to have the room set up a certain way, Micah has to be wrapped and positioned a certain way, they have to take off and reapply stickers and tubes to their liking, etc. the problem is that every time they mess with him, he desats. I had left the room for 30 minutes this morning to have breakfast and when I walked in he was recovering from desatting all the way down to the 20s!!!!?! Ugh. The nurse and respiratory therapist were like, "oh I don't know about feeding him today, not after that." But thankfully, the very aggressive doctor walked in and said, "just get him back up, we all know he desats when he's upset." And if course he came back up and was fine...

Then you have the nurses that are too hands off. Last night's nurse, for example, was no where to be seen even though Micah was her only baby last night. He'd start crying, causing him to desat, and another nurse would come in to check in him. What the heck?!

I feel like if Ray or I weren't constantly here they'd have him on all sorts of machines, tubes, etc. It's so frustrating.

Despite my rant, I'm so thankful for his current status and for the aggressive doctor... whose shift just ended :( ... I guess I'm just scared we'll have more set backs without the right people being around.

We love you, Micah! You're so strong!

- Laura

With everything going as it is, we wanted to get Micah baptized while he was still in the hospital. I figured this would be the case but didn't realize how it would add extra stress. On Friday, we had Fr Pollard battle traffic to baptize and confirm Micah. We barely got it in before the cath lab. Dylan's baptism was such a great day and big family event. Laura and I were there, along with my dad and older sister. I know that the baptism will give Micah extra graces and help ease our minds in any future super stressful situation (like surgery), but Laura and I couldn't help but be sad that it Micah had to have it this way - in a rush, with no mass, few family members and just a little syringe to trickle the water on his head. 

 

In case you're wondering, we don't have his godparents figured out yet or his confirmation name - we would like him to choose that himself in about 13 years. 

Micah and Dylan got to meet for the first time yesterday. Dylan had a sad look on his face. I'm sure he can understand that his brother is struggling through something. He touched his little toes and tapped his face. 



Dylan will be a great big brother

- Ray

PS: Anyone want a free dog? We're seriously thinking about giving Luna away. It's so difficult to go back and forth to the hospital to be with Micah and also make sure we're spending enough quality time with Dylan. Luna is getting neglected :( and she takes up too much of our time that could be spent with our children. The whole situation is just unfair and heartbreaking.

Friday, June 6, 2014

Cardiac Cathetarization

Over the last two days the doctors have been contemplating cardiac catheterization (cath procedure) on Micah. A cath procedure is when the doctors insert a catheter through his arteries to the chambers of his heart. The doctors (I think) can measure oxygen levels of each chamber, identify collateral/pulmonary arteries that can't be seen via sonogram, identify blood pressures, etc. They decided they needed to perform a cath because he isn't "following the books." Typically children with this disease can be weaned off PGE soon after birth and they struggle with above average oxygen saturation. Micah is the opposite. He is still on PGE and his saturation levels are still too low. 

The doctors wonder if the PGE is causing him to have low blood pressure. They also wonder if his ventilator is causing mucus buildup in his lungs. Both can affect sat levels and might explain his current situation. The cath will at least explain the blood flow to the lungs. 

Over the past few days, based on the amount of oxygen adjustments and going on and off the PGE, perhaps we should have realized that the doctors are unclear on why his stats are low. Dr. Donofrio even mentioned that babies with Micah's heart condition often have high oxygen levels (in the mid 90's, not low 70's). It's troubling for us to realize how mysterious his situation is.  It's really difficult to think about how there are a number of procedures/drugs that are keeping him stable, yet it's hard to say exactly why it's working or not working. It's all so
fragile. 



He's scheduled for his cath procedure between 4:30-5:00pm tonight. 

Also, we're having Father Marcus Pollard stop by to baptize Micah before he goes in for his cath. Though we'd prefer to have all of our closest family and friends present for such an occasion, we're so thankful he is taking the time to come to the hospital.

We love you, Micah.

Wednesday, June 4, 2014

Small Set Backs

We had our first set back today.

Micah has been doing really well these last two days. He's been maintaining good oxygen saturation (sat) levels and the doctors even wanted to try weaning him off of his prostaglandin (PGE) again.

He was scheduled for an MRI this afternoon at 4:00p. By the time we transported little Micah, he kept desatting (decreased oxygen saturation). They cancelled the MRI and we took him back to the CICU. He continued to desat and before I knew it there were 11 nurses, doctors, and techs in the room. The ICU doctor told me they wanted to intubate him...

😔😢 and there is our set back.

I feel like the situation escalated so quickly. I didn't foresee this at all when they told us he was scheduled to have an MRI. All I wanted to do while he was desatting was to comfort him. But he was being poked and handled by everyone and his crying only got worse and worse.

Now he's peacefully resting with a large tube up his nose and down his throat. He's still so beautiful with all of his stickers and tubes.

These last four days have been the longest 4 days of my life, I think. I don't know how parents of sick children keep sane. I was starting to feel better about the situation but now I'm back to feeling sick with sadness and worry.

I love you so much, Micah.

Tuesday, June 3, 2014

Micah Arthur Bennett is here!

Finally another entry.

I spontaneously gave birth to Micah on the Saturday morning of May 31, 2014 at 5:54am. I was 37 weeks and 3 days along when he arrived. He weighed 7lbs 2oz and was 19in long! He has the biggest cheeks I ever saw! Labor lasted about 6 hours and I felt really good afterwards! Micah was born pink and not blue (yay!) and Ray and I got to hold him before the NICU team took him away. 

I've been sending out email updates to family over the last few days. I've posted them below for all to see how things have developed over the last few days. It's been really emotional for me and Ray. I can't describe how helpless I feel seeing Micah's little body fluctuate between what is considered "good" levels and "dangerous" levels. It was a comfort to have him in my belly knowing that he wasn't struggling. And now we're facing the reality of it. I have to admit, it's not as terrible as I thought it would be, maybe I'm stronger than I think.

***

(May 31, 12:05pm) Hi family,

I'm sorry we haven't been very frequent with updates. Ray and I were able to hold Micah right when he was born. The NICU doctors said he had trouble breathing so they intubated him. Micah is with Ray at Children's Hospital (right next door to Washington Hospital Center where I'm staying). The cardiologists don't seem too concerned with his breathing. They said it could have been from fluids during the birthing process. If everything seems to be going well then they'll take the tube out later today. Micah is just now getting his echocardiogram so we should know a bit more about his heart condition soon. Here are a few pictures that were taken soon after he was intubated.

Love you guys so so much!!!!

Update (May 31, 2:30pm):

The echo confirmed no pulmonary artery (PA) but they see three other collateral arteries that are trying to make up for the function of the PA. They're going to take the tube out and see if his oxygen levels stay above 70. They're currently at 81. If levels are stable then we'll try eating and if that's successful then we might get to take him home. Lots of ifs at this point.

Update (June 1, 1:00am):

They extubated him at 11:30pmbut he's still on oxygen - his oxygen levels are at 92. He's currently asleep and sucking on a pacifier! They're going to try feeding him around 3:30am.

Update (June 1, 9:30am):

I called Children's around 4:00am. They fed him 8cc (not very much). The nurse said that's all he would take and it's to be expected since he had really busy first day of life.

They tried feeding him again at 6:30am and he didn't seem interested in eating. He only took 2-3cc. So they're going to keep trying throughout the morning. He appears to have a good sucking and swallowing reflex (I hope they're right!). He's still on an IV drip to stay hydrated and to receive glucose.

His "normal" oxygen saturation levels is between 75 and 85 but when he cries it drops to 60 which is lower than they'd like to see. For normal anatomy, oxygen levels are usually between 93 and 100.

I get discharged today at lunchtime and I can finally be reunited with my baby! I haven't seen him in over 24 hours :( I'll send new pictures now that he doesn't have tubes in his throat anymore.

Update (June 2, 11:30am):

Hey everyone! Spending time with Micah yesterday was amazing! We had a scare at one point, his heart rate randomly dropped to 60bpm and it's supposed to be between 110-160. It hasn't happened again since

This morning the speech therapist came in to assess his feeding abilities. He drank 15cc and passed the assessment! I can even breastfeed if I want :)

Update (June 3, 7:50am):

Yesterday the doctors held a surgical conference at 4:00pm. Our cardiologist, Dr. Donofrio, briefed me at 6:30p stating that they were going to take Micah off the prostaglandin (medication to keep certain arteries open) and if he was able to maintain his oxygen level then we could take him home soon and fatten him up before his surgery (which will take place when he's about a month old). 

Well, they took him off the prostaglandin at midnight and his oxygen levels slowly decreased. By 6am his levels were between 60-65 (their goal is 75+) they put him back on the prostaglandin... So I'm not sure what that means as far as going home or staying in the hospital. The good news is that he's eating a pretty good amount every 3 hours, which I'm really thankful for.

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Sunday, April 20, 2014

Nesting and Moving on

Nesting is what expecting parents do in preparation for their newborn.

With Dylan, Laura and I we're not the best of nesters.  We got a lot of baby items from family and friends, so we really didn't purchase much.  We didn't paint the guest bedroom a bright baby blue.  We didn't get large wooden letters to spell "Dylan" on the wall of his crib.  Thankfully, someone gave us a crib...which we finally started using about 6 months in.

A lot of our nesting was more mental preparation.  Laura and I were giving the first grandchild to both of our parents.  We also were one of the first of our friends to have gotten married, much less, have a child.  I remember having a strong feeling of jumping off into the unknown.  Like standing on an outlook, wondering where to place the first step down the mountain side.

To prep, we each read a book on attachment parenting, which basically said a lot of "do what you think is best." (It's easy to read books with a message like that!)  I had an encounter with a woman at an airport.  She noticed my reading and commented, seemingly friendly enough, with an "oh! Are you expecting?" I replied confidently, "Yes, I am."  She directly went into recommending me a book on training your baby "I got my baby on a schedule very quickly."  I had my first moment of being a bad ass dad and replied to her, "Why would you want to train your child?  Your child is not a pet."  That ended the conversation real quick. 

Well, over the past number of weeks of stressful task completing, I've had a few people mention with a laugh, "you two are in extreme nesting mode." I hadn't given it too much thought, prior to this.  To be honest, Laura and I were thinking more along the lines of "we need to get things done prior to mid June!"  I completed my graduate management admissions test (GMAT, like a GRE but for an MBA program).  Laura has been chugging away at her two MPA classes.  Once she is done, she'll have just 1 class left prior to graduating.  We've done our fair share of additional rosaries and we're doing all of what we can to read up, get smart and get prepped for a baby with a CHD and 22q deletion.

The biggest task that we've undergone is in selling our condo and moving out.  Back in January, when Laura and I thought we were an invincible power couple, I solicited advice from a family friend.  He wisely suggested that we should look into moving and make a sound decision, if we can afford it.  Sounded like a smart notion to me and Laura.  Before you knew it, we were out looking for town homes in Burke and replacing door knobs (the kind that look really nice, but are NOT kid preventative. Read: Dylan played in the toilet water a good amount).

I (and helpful family members) repainted our place.  I think I've become quite handy with all of the fixes we've done.  We put our place on the market and had 2 realtors come by on the first day.  Two and a half days in, we got an offer for more than we asked and they didn't ask for any closing costs.  We were thrilled and could barely believe it.  To make things even more unbelievable, the person buying our house has the same first and last name as one of us.  For the sake of his/her privacy, I won't spell it out, but lets just say, that we have a running joke about Laura being a time traveler in the future.

With having an offer on our home, we were able to place an offer on a townhouse in Burke, right close to the VRE (train into DC) for Laura.  We love the area.  Paths between the woods, tall trees, hilly, great sense of community, despite being in northern Virginia.  We were on our way through the home inspection when we caught sight of the events to come.

Our home inspector noted that there was visible sign of termite damage.  Two weeks ago, I knew next to nothing about termites.  The sellers were willing to do the right thing and send out a specialist to investigate further.  On Good Friday morning, I was on site with the general contractor, realtors from both parties and a structural engineer.

The termite damage was 3 layers beyond what was visible to our inspector.  I took pictures, drew diagrams and asked as many questions as I could.  Since Laura was in a doctors appointment, I needed to explain the situation to her afterwards.    The general contractor said phrases like, "don't any one ask me about the monetary impact at this point." and "this is a huge deal" and "I can't give anyone an idea about the duration of the job until I have more details."  A brief summary of the situation is that there was 4 structural pieces of wood totally compromised.  This caused the floor above to sink a few inches.  This would require replacing part of the floor above, 8 feet up on the walls and custom ordering a new front door.  Just to make this whole situation even more wild, there was a live snake in the storage area.  For all you Christian readers, I was definitely feeling like this was a sign.

Laura and I quickly came to the decision that we needed to find an out.  I talked to our realtor, who totally agreed and understood.  We used an out and decided to go to plan B.

Plan B is to live as homeless people!

Just kidding, plan B was to look at a property in Bristow, near the last train station of the VRE and near my parents.  On Holy Saturday, we went out to a home that we had our eyes on for the past three weeks.  It's cheaper, larger, and a single family home.  On our way over, we got alerts from realtor.com that the house dropped in price.  Perfect timing!  We saw the home and loved it.  We did our due diligence and viewed the other houses on the market, this only instilled our stance on the first home.  Our realtor took the lead and put together a game plan for our offer.  He did research on the recent comparable sales and suggested that we offer 13k less than the current asking price and 7.5k in closing.  We couldn't believe it - we were ready to offer asking price!  We deferred to his judgement and, about an hour later, we got a counter offer for the price we asked and 2k in closing costs.  That's a deal!




We're now relaxing on Easter Sunday afternoon, for what seems like the first time in forever.  (Frozen fans, I did that on purpose... yes, Dylan is watching Frozen right now - how else am I going to write this blog post!).  We went to an early mass, Dylan napped, and we spent a few hours playing, dancing, reading and relaxing.  Laura isn't working on school work. I'm not studying.  We're not stressing about our house situation. We aren't entertaining guests and we're not tired.  We're off to visit grandparents and then have lunch in Bristow with my family.

Thanks for reading, Happy Easter! 

PS: We're so thankful to Sean Blanchette, our realtor, for getting us through this.

Friday, March 21, 2014

Normal, what's that?

Laura and I are almost getting accustomed to doctors visits, extreme medical situations and a planned life with a newborn baby that requires serious medical needs and special care.   We are adapting because we have to and because we want Micah and Dylan to have a "normal" life.

The other day, I was updating my former second line manager about Micah's situation.  I explained how we're happy that Dr. Donofrio at Children's was able to break down the key concerns about the 22q deletion as it relates to the heart disease.  The two major concerns: baby has poor calcium and/or poor immune system.  Getting additional knowledge is like getting new batteries to a small flashlight...that I am using to navigate through a dark cave...that is filled with goblins. Anyways!  In this conversation, I'm noticing that my colleague starts getting those signs of visible stress about my family's situation.

This type of conversation has happened multiple times.  As Laura and I pray and strive to understand/cope/learn/grow, we are distancing ourselves from how -straight up - sad this all is.  Laura and I have our "trigger moments" every couple days, but we've decided that we need to be strong and need to be loving - at all times, regardless of our situation.  In a way, this has built up our emotional defenses.

Doctors/family and friends say "prepare for the worst, expect the best."  I got tired of that saying, real quick. What's the worst that could happen?  Well, what about me getting into a car accident, Laura being on her own and Micah dying in surgery.  FYI, that's what goes through my head when someone says "prepare for the worst."  How can anyone prepare for something like that?  That's crazy... I'm definitely digressing, but the point I wanted to make was that Laura and I are preparing for difficult situations (Micah going into surgery right after birth, Laura going into pre-term labor, Micah not developing mentally as fast as Dylan, things like that). In that type of mental preparation, we grow immune to the smaller things - like talking about how Micah has a hole in his heart - no, not the kind that heals itself.

I had a conversation two days ago with my good friend from work.  He came by to check up on me, say what's up and see how the family is doing.  I felt fine, we were doing well that day and the past week.  But in a routine amount of "here's the updates on Micah's/Laura's situation" my man gets emotional. Real life happens from the hours of 9-5 M-F.  Real men get emotional.  (I know you're reading this, by the way, haha, my bad).

These moments remind me of two things. 1. We're going through some hard times. 2. There is no normal.

I watched a video a month ago, there's a camp in PA (Dragonfly Forest) that accepts kids with special needs.  There's a moment in the video where a child says, "There's no such thing as normal."  Boom, hit me like a rock.  I've lived 27 years measuring myself against predetermined standards.  Comparing, competing, judging myself.  It's just not healthy.  Even though I've come a long way on my personal comparisons, like "Man, I wish I was making more money, in relation to other ISE graduates working in the area" it's a whole new ball game in making that leap of re-defining or eliminating the idea of normalcy when I think about Micah.  Thinking about how everyone is on a unique path, everyone is in a different time of their journey, everyone has struggles and everyone is valuable.

To think that Micah will not have a normal life is a wasted thought.  He's going to be born, go through pain, struggle eating, struggle learning, struggle sleeping, be curious, be happy, be loved - sounds familiar.  Any time that I spend thinking negatively is time wasted.  I can spend my time loving others, loving Dylan, loving Laura, loving Micah and even loving my crazy dog.

(Old photo)



Monday, March 17, 2014

Inova or Children's?

The trouble with Congenital Heart Defects (CHD) and genetic anomalies is that you're fearful about whether or not you're choosing the right medical care. I have nothing but love for the doctors, surgeons and nurses at Fairfax Inova. I had a wonderful birthing experience there when I had Dylan. But every time we visit, I just zero in on the frequent phrase, "one of the more severe forms of CHD" and I start to worry. So, after much thought, Ray I scheduled an appointment with the cardiologists at Children's National Medical Center in Washington, DC.

After reviewing the echocardiogram pictures, Dr. Donofrio said she sees what looks like a very VERY small pulmonary artery (PA) that didn't develop properly. And she also sees what appears to be an equally small patent ductus arteriosus (PDA). She also gave us some more insight on what to expect after he is born.

Best case scenario: After Micah is born, if his collateral arteries (the ones that formed in the absence of his main PA) are providing enough blood to his lungs and circulation looks good, then we can go home after a few days to fatten him up and prepare him for surgery 4-6 weeks later.

Not necessarily "worst" case scenario, but least favored scenario: If his circulation is poor then he can expect to have surgery within the first week of his life.

We also met with the nurse coordinator, Kami, and social worker, Heather, who told us about Washington Hospital Center's OB, Dr. Maungman. They both recommended we deliver there so Micah can be transported quickly to Children's - they're right across the street from each other in the same medical complex. They even have a connector bridge so that right after I give birth, Ray can run over to Children's to be with Micah while they examine his heart.

Heather took us on a tour of the Cardiac Intensive Care Unit. Each room is private with two "beds" so the parents can be with their heart baby 24/7. Inova puts their heart babies in the NICU with preemies and other sick babies - it's not specialized or private, and the parents can only coming during visiting hours. After the meeting, Ray and I decided Micah would receive the best post operative care at Children's. The only disadvantage about Children's is that its about an hour from our home whereas Inova is about 12 minutes away. I think we can deal with that :)

Having made our decision I feel so much better about the looming surgeries Micah will need.

Another update is that at the last ultrasound Micah's kidneys were measuring smaller than the previous visit! Finally a bit of good news. And I haven't gone into preterm labor and I'm almost 27 weeks! There are things to be thankful for!

I'm still waiting for that miracle though.

Wednesday, February 26, 2014

Grant me the Serenity

This week is our first week since Jan 20th that we haven't received new, worse information.   We had a follow up visit with our cardiologist, who performed a fetal echocardiogram (sonogram).  Laura and I said this prayer while waiting.

Lord grant me the serenity 
to accept the things I cannot change;  
courage to change the things I can; 
and wisdom to know the difference.
Living one day at a time; 
Enjoying one moment at a time; 
Accepting hardships as the pathway to peace; 
Taking, as He did, this sinful world
as it is, not as I would have it; 
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life 
and supremely happy with Him
Forever in the next.
Amen.


Our doctor was pleased with the clarity of the echocardiogram.  Micah is larger, which makes it easier for him to see his heart lesions clearly.  It’s incredible how much change is viewable on his heart in the past 3 weeks.  It’s also incredible the impact of simple, grainy, black and white images have on our family. 

The good signs are that his heart is growing at the appropriate rate and that his heart is operating at the appropriate function (both ventricles have a good squeeze).  Aside from that, there isn’t much more to ascertain at this point.  He still doesn’t see a pulmonary valve.  He can’t view the small valves (MAPCAs) that send blood to the lunges.  The valves will be critical in the operations that occur after birth.  It seems that the surgeons will have to place a conduit from the right ventricle, to act as a pulmonary artery, and link the MAPCAs from the lungs to the conduit. 

We spent some time talking with our doctor and obtained some new information about what to expect.  A slight degree of TOF would likely have just 1 surgery, to fill the VSD and to remove obstructions in the pulmonary artery.  Since Micah’s is at the other end of the spectrum, he’ll likely have a surgery right away, stay in the hospital for a number of weeks, and then have another surgery prior to turning a year old.  This seems to be it.  Just wait until the birth (which, we pray will happen near full term).  Next week we will meet with our surgeons. There is so little that we can do.  We are powerless and weak. 
Laura and I have been listening to Fr. Emmerich’s “Detaching with Love” CD’s over the past few weeks, by recommendation of my sister.   Fr. Emmerich is a friend of my parents.   It’s very helpful to realize that there is no such thing as a normal situation exempt form difficulty.  We live in an imperfect world.  We are weak and powerless without love.  In dying to what we hold dear, we may experience the grace of God’s love.  Here’s a link if you are interested. http://www.12-step-review.org/books/index.html
We’ve also prayed a novena to St. Francis (via the http://www.praymorenovenas.com/ website).  I feel I pray for something new each day.  Pray for strength. Pray for Micah’s soul. Pray for Micah’s heart. Pray for Laura. Pray for peace. Pray for Dylan. Pray for humility.  Pray for family. Pray for friends.  Pray for the woman who was honking like a mad person on the way into work today.  Pray for wisdom. Pray for understanding God’s will.

One of the primary struggles that I’ve dealt with the past few weeks is in deciding to keep course or pivot.  

Some days, it’s a battle to simply get through the day (last Monday comes to mind, see Laura’s last post).  Some days, I’m left with decisions on how to spend my time and energy.  In January, Laura and I were making progress towards moving.  I can’t say if we should move or not, but I’ve been spending time working on making improvements in our condo. I’ve installed bifold doors, painted hall doors, installed new door handles, removed and installed a new door jam, removed and installed a new ceiling fan.   Dylan seems to enjoy participating.  




I hope that Laura and I can set ourselves up for making a sound decision on moving and I hope that we’ll see God’s plan when we are faced with the decision.  

I’ve been continuing working out 6 days a week.  It’s a very difficult decision to spend time and energy in working out, as opposed to in other areas.  I’m trying to decide if I should cram for GMAT’s, take the test, and submit an application to GMU’s MBA program prior to 3/15 – in order to be considered for a potential scholarship.  
I’ve been playing music lately.  I find it terribly frustrating to sing well (which is the current state I’m in).  Stress plays a large factor in that.  I’m surprised how many people have asked me lately about if I’m playing music.  It’s nice to hear people’s interest. 
I’ve had a couple of work/career related changes that presented themselves before me.  I know that the more effort I place, the more changes will come.  It’s hard to decide what to do there, as well. 

Sure seems like a lot when I write it all out!  What am I doing…

I want to say thanks for reading. Thanks for the support.  I've had a number of moments where peace was easier to obtain, due to the support and prayers – I’m sure.  I truly hope that there are 1 or 2 people that will read our blog and help find peace because of our story. 

Remember that we are all weak. We live in a flawed world. We can find peace. Love is greater than evil.

Know yourself. Trust in god.