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.

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.

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.

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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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.

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)

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.