Praying for a miracle

I don't know any other way than to just say it. Our littlest guy is not okay. . . Samuel needs prayers. His lungs are worse than we thought, and our medical options are extremely limited. What we have is hope, faith, prayers for a miracle, and a wonderful medical team that loves Samuel.

Our baby is very sick. I will go into more detail - but Samuel has been intubated, medically paralyzed, and heavily sedated since Friday night to get, and keep him stable. Our hearts are breaking.

Here is the long version... as we understand it so far...

After a successful tracheostomy, Samuel was breathing easier and looking fantastic! He loves to read books and make lots of eye contact with visitors, so the trache was great because it allowed him more freedom. But, routine tests were continuing to puzzle us... for example the CO2 level in his body was going up and up and eventually off the charts. There was talk of reintubating him - back on the ventilator again was hard to swallow. Prior to making that type of decision, pulmonology and our attending neonatologist consulted and decided to get a CT scan. They don't routinely do CT scans on BPD babies... they even told us going into the scan not to expect much out of it, but they wanted to cover all bases, even those not routinely used.

What the scan showed was devastating. It was also completely unexpected... from what we understand, most BPD babies don't have these results. But, it does explain his pattern of crashing. The team actually went over the scan numerous times to be sure of what they were seeing. Everyone was amazed that Samuel has done as well as he has with what is going on inside his body. Samuel has very little "good lung"... large portions have cysts and signs of pulmonary fibrosis, which are like scars where the lungs have been damaged from the very thing keeping him alive - the ventilator and high levels of oxygen. These bad portions are so large and numerous, that they cannot be removed. In addition, the parts that are good, aren't great.

Here's the easiest way I have found to describe the scars, and then treatment plan... normal, good, lungs are filled with air sacs that look like spider webs. This is where the O2 and CO2 exchange happens. Instead of the webbing, Samuel's lung have big cysts which create 'flat' surfaces. Therefore, when the oxygen comes into the lungs, instead of being processed through the air sacs (spider webs), it takes the path of least resistance, which is to pass through the flat, scarred surfaces. When this happens, there is no O2/CO2 exchange. This is where we get into serious trouble.

Therefore, it was determined that the best treatment plan would be to go back on the JET ventilator, which delivers literally hundreds of little breaths every minute. Instead of big puffs of air, the little breaths would be forced to go though the air sacs and get the O2/CO2 exchange. Plus, this allows the scarred areas to collapse, with the hope that with time the good air sacs will grow and multiply. Because he is such an old baby (bigger and stronger than most in the NNICU), he would have to be paralyzed in order to get him to relax and not fight the JET. With the paralysis comes heavy sedation, so that he won't know he's paralyzed and be scared and uncomfortable.

DB was already at the hospital visiting when all of this was determined. I was called immediately. Omi and aunt Nancy were on their way to the house to watch Olivia and George. Because things were looking so grim, the plan was for me to be able to hold him for one hour... just in case. We made eye contact, he heard my voice, and I held him for 5 minutes. It was truly amazing that they had put the plan in place. He started crashing... and as DB and I held his blue little hands the team bagged him and kept him breathing. Just then the JET ventilator arrived - it had been ordered from another hospital in another state (all at our hospital were already in use) - and the RT's were furiously preparing it for our guy. The paralytic and morphine were already on hand, in addition to other drugs that I can't spell - in they went. And out he went... into medically induced paralysis. He was hooked up to the JET, and we hoped for the best.

It was the worst night of our lives. But 24 hours later, he was considered stable... with the understanding that one bad event, and we could lose him. Tonight, we are still in the same place. The medical team has worked for the last two days to find the perfect JET settings, and tonight he seems comfortable. His O2/CO2 exchange seems okay... his heart rate seems okay... and he looks relatively rosy, just like a little baby should. We celebrate that!

We celebrate, but in the same breath we are terrified, and sad, and hopeful, and praying for a miracle. We find out more tomorrow, but it seems that we may only have two options... to work towards a possible lung transplant or for a miracle. We're not even sure if he is a candidate yet for the transplant... but short of a miraculous healing of Samuel's air sacs, it may be our only option.

Tonight we were asked to be thinking about what we would want if Samuel crashes... Four days ago he was on the verge of smiling and we could hold him in our arms. We are in shock. We are asking for your prayers... for our entire family of 5.

Happy 4th of July!

The 4th of July has always been a Biaett Family favorite... but it just got cuter with these patriotic duds :) (Thank you Omi!) We even took Olivia and George to a cookout and fireworks - almost makes you feel normal :)

George in his festive outfit and his way-too-cute kicks :)

ha ha! love them! He's ready to take off!

Sittin' pretty in her red, white and blue :)

Never been cuter... or happier :) Not only lookin' good, but breathin' easier! THAT is awesome!

I couldn't resist one more of Samuel - this is one of his first big boy outfits! He has come so far :) And check it out - he got to see fireworks! They were right out his window over the harbor. Almost brings me to tears just thinking about it :)

Beautiful Boy!

Today, for the first time since he was born, five months ago, we saw Samuel's face with no tape or tubes! We knew he was a good lookin' guy... today confirmed that he is absolutely a beautiful little boy!! It brought tears to my eyes... actually, that happened a lot today :)

The Bronchoscopy went really well - his airway looks great! There was absolutely nothing to fix. So, Samuel got the tracheostomy. It was a scary day... but a great day. He looks amazing :) And comfortable - all things considered of course :) Not gonna lie, it's a bit intimidating to look at the trache right now... but we have been assured that as it heals, it gets easier. Bottom line, no more things stuck to Samuel's face, up his nose, or in his mouth - YEA! Thank you so much for all of your thoughts and prayers!

Before, on CPap...

After, with trache...

On his way to the OR... such a brave little guy!

The best for last... above is before...

After! Our beautiful boy!

Bronchoscopy

Tomorrow, we need your thoughts and prayers... for our new family... but especially for Samuel. It's a big day for our little guy! His is working so hard to breathe... but he's crashing again, his lungs aren't healthy, and tomorrow we will try something new.

With his therapy barbell :)

During a bronchoscopy, they will look at his airway. If there is any obstruction, they will fix it! That would be fantastic! But, we don't anticipate there will be an obstruction. More than likely, Samuel will get a tracheostomy. Basically, the tracheostomy is when they make a hole in Samuel's trachea, through the front of his neck, and then insert a breathing tube. This is a great website that I found that explains it... http://www.tracheostomy.com/faq/what.htm.

If he gets it, the trache will be temporary - depending on his airway (they will check to see if it is "floppy") it sounds like we should expect a minimum of one year.

Why the trache?

- Samuel isn't getting better. He is working so hard, and we have tried so many things, but after a few weeks on each new treatment, he crashes. Right now they're doing everything they can to keep him off of the ventilator.

- The trache will help him to breathe easier! Samuel won't have to struggle so much! He's old enough now to know that he's uncomfortable and wants to be doing more than he's allowed to do with all of the breathing contraptions on his face.

- Right now, Samuel's CO2 levels in his blood are extremely high. This is very dangerous. With the trache, his body can get the oxygen that it needs AND these CO2 levels should come down.

- Neurologically, Samuel looks amazing!! He is bright-eyed and bushy-tailed! He loves to read, and look around, and interact with people! This is incredible, especially for a baby who not only started so small, but has spent his first five months in the hospital. To keep him going in the right direction, he needs to come home! He needs the interaction and stimulation that he will get from being with his family. Also, a lot of a baby's development comes from oral stimulation and with all of the stuff on his face he can't get that. With the trache, he can nurse and bottle-feed!

- He will be able to come HOME soon! Without the trache, it could be months and months... and he would probably still need it. With the trache, it could be a matter of weeks!

Why not to do the trache?

- I am terrified. It's pretty simple. I am so scared. I'm not sure why... the doctors, ENT folks, pulmonologist, respiratory therapists, and nurses are all on the same page... this is the best thing for Samuel. I know this is the right thing... and I'm excited for Samuel to feel better... and I can't wait to see my baby's face without any tubes... but that doesn't make it any easier. It's surgery.

A bit of good news! Even if he does get the trache, most likely Samuel's lungs will grow to be healthy and strong! In other words, will still be able to play sports besides golf, bowling, or bocce :) Or sing, like the contestant on American Idol :) If he's interested of course :)

So... tomorrow at 3:30 the doctors will do the bronchoscopy. At 4pm they will decide whether or not to do the trache. We're still hoping for an airway obstruction that can just be fixed, DB is convinced it's just the jellybean he gave Samuel last week, but preparing ourselves for him to come out of the procedure with the trache. We're excited there is a new option... but we're scared that our little boy might be having another surgery. I pray a lot for God to prepare Samuel for His purpose... and for the strength to keep praying that prayer.

Fathers Day!

DB's first Father's Day! Well, first Father's Day with cards from someone besides his four-legged "children" :) It's been almost five months, but celebrating something like Father's Day still just feels surreal... we're parents! ha ha!

Not gonna lie... I'm proud of this photo :) Could they be any happier?!

For Father's Day, George decided to chill out a bit :)

I LOVE babies in collars!

DB spent the afternoon with his little guy - who has grown out of his preemie clothes! YEA!

The NNICU nurses "helped" Samuel make this for his dad... just about brought his mom to tears. Dad claims he had "something in his eye" :)

DB after the Father's Day scavenger hunt :)

Ten Pound Party!

That's right - we had a 10 pound party this week! (Thank you Kristen!) George hit ten pounds this week, and Olivia is actually eleven pounds! WOW! Samuel is not far behind at nearly eight pounds - he'll get his very own party soon :)

After the party, DB and I took a few minutes to look back at some old photos. This is when we realized just how amazing ten pounds really is!

Welcome to the gun show!

I know, I'm a looker :)

Party Time! Friends and pound cake - what more can you ask for?!

Even more amazing... scroll through these from the first week, and then go back to the ten pound photos. Nothing short of a miracle! God is good :)

Olivia and Dad kangarooing

Sweet girl sleeping - all 2lbs. 12 oz (O)

A handful of sunshine :) (O)

George all stretched out - all 2lbs. 10 oz

Hi Mom! (G)

Under the lights (G)

Hello June!

The babies are doing really well! It's mom and dad that have been through the whirlwind this time! What a crazy month it has already been...

The school year ended, so Dad is now Mr. Mom for the summer break. From carefree summers of surfing, home repair, yard work, and playing with the dogs - to preparing bottles, washing bottles, changing diapers, making up silly rhymes, and overseeing "tummy time". What a change! The funny thing is - he's amazing! I have my very own domestic goddess :)

I went back to work full-time for the months of June and July... come August it will be part time... but I'm blaming my lack of blog posts on going back to work :) The hardest part is leaving the house in the morning, but once I'm there it's go, go, go, so the day goes pretty quickly. Plus, I know DB is at home with G & O, so my mind is at ease.

George & Olivia attended their first birthday party - their favorite cousin is 13!

Samuel is doing so well! He did have one rough week, so our hopeful come-home-date has been pushed back just a bit to early August, but now everything is back on track :) Samuel had a potential blood infection, but everything turned out great! Doesn't sound so bad - a suspected infection - but in order to prove he didn't have it he had to have yet another work-up. We haven't had one in a while, so it broke my heart... a few sticks, an IV, and a lumbar puncture... ugh. But as I said - it's all good! Now he's back to working on his breathing :) He even had a few nasal cannula trials this week - yea!!! (He's still on CPap 80% of the time, but trying the cannual a few hours each day, and he LOVES it!) And get this - he's more than 7 pounds - no more preemie clothes!!! No smile yet, but he is SO close :)

Sweet boy fast asleep :) Just a little mark left on his hand from the IV... love those chunky arms!

Hi Mom! Check out how strong I'm getting!

Whatcha doin' up there? Check out my cuteness :)

George is growing just a little every day :) He gets a little fussy now and then, and shoots us some great smiles, but for the most part he is our serious guy - with the most expressive eyebrows I've ever seen! (Wonder where he get's those?! Dad!) He's eating a little better every day too... he's our puker... ugh. But, he is just under 10 pounds!

Laughing :)

Excuse me?

Oh geez!

Olivia is truckin' right along! She is a whopping 10 1/2 pounds! She has started laughing and loves to smile :) Such a girl! She loves to eat and socialize, and makes the cutest little girl noises you've ever heard. She has completely grown out of her newborn clothes!

Lookin' pretty :)

Oops - fell asleep mid-prayer :)

Dad! That's my ice cream! (YoungLife fundraiser - starting early :) )

DB and are I doing really well! I've also started coaching the school swim team again and DB has taken on home improvement projects at our house and at Omi's, so we are certainly busy. More than anything, we want Samuel to come home! The daily trips to Charleston are taxing, and we are beyond ready to have our family together. We miss our little boy.