A chapter in Zacchaio's life has closed today. After just shy of 2 months in the NICU we get to bring our sweet baby boy home!
I wish he could be coming home under "normal" circumstances, but truth be told I grieved our loss of normal a long time ago. The last 8 weeks have been a crash course in learning to embrace what is. I hit rock bottom in the process and hope to never find myself there again (I'll settle for an occasional trip or stumble). With one chapter coming to an end we start another. One that defines our new normal. One that helps me love and embrace who and what Zacchaio is and will become. One that will help me stay courageous and not wallow in self pity. One that will remind me to remain inspired by my son and not limit his potential with my wavering grief. One that helps me to stop caring about the judgements of others.
I believe God is doing His incredible work through our little Zacchaio. For such a small boy he has a magnetic presence that inspires such faith, love, and hope. He has changed me in ways I never thought possible.
I believe there are more miracles to come. Chapters of them.
Zacchaio comes home with an NG tube and a 24/7 cardiac monitor. We'll get to enjoy him hospital-free for a couple of days until we start the slew of follow-up appointments to evaluate and monitor for abnormalities related to his genetic syndrome. We have 11 specialists on the list for the time being.
Although we can't wait to throw the welcome home/celebration of life party, it remains on hold for now. Zacchaio's immunities are limited due to his hospital course and he will be just beginning to rebuild them upon getting to drink my milk for the first time next week. Any earlier puts him at risk for his chylothorax to re-enter the picture. For now we go into hiding, but we look forward to his grand reveal!
Thank you, Lord, for sending us home. Our dream of being a family of four has come true.
We love you all!
Unfortunately, it didn't work. I'm feeling pretty deflated.
The cardiologists are now trying to figure out with which cardiac monitor they feel most comfortable sending us home. We'll have weekly appointments with the cardiologist once we're discharged. Their hope is that the arrhythmia will one day "burn out." All of us are in agreement that the day cannot come soon enough.
March 4, 2014 (almost 2 months old)
And so it goes...
Zacchaio's heart rhythm has taken on yet another form, atrial flutter. If only it was as cute as it sounds, like the sweet fluttering of a butterfly's wings... Unfortunately not.
The top chambers of his heart are beating 3-5 times faster than the bottom chambers. It's like he has a teenager for a heart and we never know what mood or attitude it will wake up with.
He is scheduled for transesophageal overdrive pacing tomorrow. An electrode catheter will be put down his esophagus (while he's sedated) near the top chambers of his heart and they will attempt to electrically shock the chamber(s) with hopes of stunning them back to a normal pace. Scary.
We can't ever get too comfortable... God has an interesting way of making sure we always stay challenged in this life of ours.
Praying for a break...
February 21, 2014 (1.5 months old)
A piece of good news while we hope for cooperation from his heart...
Full body skeletal x-rays were normal! That rules out the presence of any bone cysts, dysplasia, or acromegaly for the time being. The scans will continue throughout his life, but it's nice to know we can worry about one less thing... for now. Love...
We were so close to being tubeless... Unfortunately they had to put an IV back in Zacchaio and start him on IV heart medications since the oral ones weren't doing the trick. His heart is being very resistant to medication which has made for a difficult week and a very emotional day. One step forward and two steps back.
February 19, 2014 (1+ month old)
I never thought I would describe eight hours in a glider chair as wonderfully spent... He made it glorious!
Every day Zacchaio has been a bit more successful in his feeding ability. He has only been able to take an entire oral feeding once, but he's learning quickly!
We've had a minor setback with his heart rhythm/rate. It has not only returned to being very fast, but has also become very chaotic. We're praying that medication alone can manage the difficult rhythm, as maintaining the way he is now can lead to remodeling and enlargement of his heart. The heart rhythm he is currently exhibiting is rare (well of course, why not add another rarity to his ever-growing list?) and present in only 0.2% of births which is making its management rather difficult. We're very grateful for the dedicated cardiology team at UCSF and their persistence with Zacchaio's stubborn heart!
And so it goes...
Sending love from San Francisco...
February 15, 2014 (1+ month old)
While I'm home sick with a virus, Aidan Skyped me in for our latest feeding attempt...
Zacchaio managed to take in 5mL of the 60mL he needed... It may not seem like a lot but considering he slept through his last three attempts, this is a great success! Go baby, go!
And on another note, goodbye oxygen!!
February 8, 2014 (30 days old)
Goodbye breathing tube! This time it's for good!
February 6, 2014 (28 days old)
Baby Zacchaio meets his big brother Alkaio (age 3.5) for the first time.
Today I really smiled for the first time in four weeks.
As a whole, this last week didn't offer us a lot of hope. Zacchaio's chest tube output was increasing, medications were failing, he was still just as dependent on the ventilator as when he was first transfered to UCSF, and he still couldn't be fed through his digestive system.
Today God answered our prayers and gave us a break in the cycle, a respite to rejoice in good news, and memories that will last a lifetime.
Zacchaio had the opportunity to meet his big brother for the first time today. He was showered with unconditional love as Alkaio sang sweet lullabies over him. Alkaio spoke of how he couldn't wait until his brother came home without his tubes and stickers. He also whispered to me how strong and brave his baby brother was.
On the way to UCSF, Alkaio reminded us of the dream he had days after his brother was born. His dream was of Zacchaio being 4-years old and running to push the elevator buttons without letting him have a turn at pushing them. I still find myself praying every night that his dream comes true. It seems so rudimentary, but this would be a reality so far beyond what any doctor or research believed to be possible. He is our miracle baby in every sense of the word and I hope he continues to defy the expectations of his diagnoses.
And now an update on his health condition. Doctors have officially used the word "optimistic" when referring to Zacchaio's chylothorax! Immediately following his chest/abdominal MRI which was evaluating him for surgery, his output markedly decreased to almost nothing. Normally this is concerning because it means his chest tube isn't draining effectively and he is reaccumulating fluid around his lung. The great news is he is continually requiring less oxygen and less breathing support on the ventilator! In fact, they're hoping to extubate (remove the breathing tube) in the next few days as long as he doesn't regress! His BEST chest xray was today after minimal ventilator support and almost no chest tube output. Surgeons are not recommending surgery, and neonatologists are amazed at his response to treatments.
His NJ tube feedings have been increased to 5mL/hr with great tolerance! Once he gets up to 20mL/hr they can stop his IV nutrition.
His heart rhythm has responded better to his newest medication, Flecainide. Prior to this medication, the top chambers of his heart were beating at 300-400 bpm (beats per minute) with his lower chambers beating at 80-150 bpm. His heart needed to be more synchronized and now we're finally starting to see more of a 1:1 or 1:2 ratio of upper chambers to lower chambers.
So with that news we continue holding our baby's hand with more faith and light every day. We tell him he needs to keep fighting to earn the right to come home, especially now that we're finally starting to see progress.
Sending love... And remember to smile! I'm hoping to have more reasons to do so from here on out.
February 1, 2014 (23 days old)
We need prayers. Doctors will be attempting a synchronized cardioversion in the next few minutes to try and get his heart into a regular rhythm. It could throw him into a life-threatening arrhythmia. Lord we pray.
::30 minutes later::
January 29, 2014 (20 days old)
The last couple of days have been really difficult.
The cycle continued. The chest tube clotted, the fluid reaccumulated in his lung and Zacchaio had to be intubated again for extra breathing support. The first-line treatment for his rare congenital chylothorax (an IV medication called Octreotide) hasn't been very effective up to this point, as he is still having a large amount of fluid out of his chest tube. Individual case studies (although limited) using the medication have 'duration of therapy' listed as anywhere between 4 to 35 days and we've technically only been on it for 1 week. We remain hopeful that the medication will work, as surgical approaches to fix such leaks are dangerous and mostly ineffective.
As mentioned in my last post, Aidan and I advocated for a transfer to UCSF (ranked a top children's hospital) in hopes of a new start and a fresh perspective. We'll have a wider physician network, especially in regards to speciality doctors for his rare medical issues.
At the end of the day, we as parents want to feel as if we did everything in our power to give Zacchaio the best possible odds.
Praying for a break.
January 25, 2014 (16 days old)
Today we have clearer expectations of what may be for at least the next few weeks.
For now we find ourselves in a holding pattern.
The leaking fluid is putting too much pressure on his lung (and the fluid is now coming out around the chest tube site in addition to out of the chest tube). Even though his breathing tube was removed yesterday, it's just a matter of time until the pressure is too great again, which will lead to him being reintubate to reinflate his lung. The breathing tube/no breathing tube cycle will continue until the leak plugs (they're trying to minimize his time with the breathing tube due to associated risks). His PICC line (where he gets IV nutrition) is possibly worsening the leak, but he needs nutrition due to his gut still not processing food (nobody knows why). They can't get his NJ tube properly placed until Monday. Once he can tolerate NJ feedings, we can remove the PICC line.
It seems like a never-ending cycle and we continue to pray for a way to break it. It's hard not to wish for time to quicken, but the reality is we don't know what ultimate ending we're headed for. We cherish every minute we get with our baby Z, and I have to remember not to wish away the time God has has given us together.
January 24, 2014 (15 days old)
Today felt like hope. Zacchaio was extubated (breathing tube was removed)! He's managing on just a high-flow nasal cannula.
Zacchaio still has a congenital chylothorax that is putting out an outrageous amount of fluid via chest tube every shift. Other than having him on a traditional Octreotide infusion, they are a bit at a loss with what else to do considering his condition is so rare.
They removed his OG (mouth-to-stomach tube) and have placed an NJ (nose-to-intestine) tube as an alternative strategy to jump-start his gut. Our little guy still hasn't been able to tolerate any feedings, but we're hopeful this does the trick!
As a family we are striving to find better balance and continue to create new ways to love and connect with each other.
Sending love your way and appreciating the love we continue to receive.
January 23, 2014 (14 days old)
I've now healed enough to drive myself to the hospital to visit Zacchaio every day. On the way there for the first time on my own, I turned on the radio and found myself lost in a song I had never heard before, Lady Antebellum's - Compass.
I have to say, it would be easy to find a theme song that resonated with the feelings of grief, hopelessness, guilt, and helplessness I fight back against every minute of every day. For some reason, this song has helped me tremendously in being able to subdue the tears and negative emotions and instead, shower Zacchaio with love and joy at his bedside.
The track is on "repeat" indefinitely. To our baby Zacchaio, who is pure of heart.
"Yeah, it's been a bumpy road.
Roller coasters, high and low.
Fill the tank and drive the car,
pedal fast... pedal hard...
You won't have to go that far.
You wanna give up because it's dark...
We're really not that far apart.
So let your heart, sweetheart,
be your compass when you're lost.
And you should follow it wherever it may go.
When it's all said and done, you can walk instead of run.
'Cause no matter what you'll never be alone.
You'll never be alone."
January 21, 2014 (12 days old)
Today we discovered that Zacchaio was leaking lymphatic fluid into the pleural space around his right lung. It's most likely due to a congenital malformation of his thoracic duct which circulates lymphatic fluid (the malformation is related to his nevus skin condition).
Anyhow, because of the fluid putting extra pressure around his lung, they had to put a chest tube back in to drain it in addition to a breathing tube back in to help re-expand his lung. He's breathing with more ease now.
One of our dearest priests visited today and showered our baby boy with much love and many blessings. It couldn't have come at a better time.
Love to you all for keeping our boy in your thoughts.
January 20, 2014 (11 days old)
1. He's had a bit of a regression with his breathing. We're back on the CPAP machine for added pressure because both lower lungs seemed to have collapsed some. He's having to work harder to exchange oxygen and we're hopeful we won't have to default back to a breathing tube. One of us is always at his bedside watching the rise and fall of his chest with every breath he takes.
2. After his eye exam we discovered he has two large opacities (actual nevi in his right eye) on his cornea. It's difficult to know what his vision will be like, but according to the doctor we're probably looking at peripheral blindness. The good news is his cornea is not completely occluded and there is a small space in the center that is clear. We're grateful his left eye is unaffected.
3. We've tried feeding him through his OG (oral-stomach tube) again and have had minimal success, so for now we're holding off and maintaining IV nutrition. At least until his respiratory status improves.
4. His heart rhythm remains irregular but is maintaining an appropriate rate. The cardiologist seems comfortable with his heart's progress so far.
If you know me well, you know that I rarely ever ask for help. This entire experience has truly enlightened me in regards to relying on and trusting God, family, friends, healthcare... We continue to celebrate every single day we get with our mini miracle... But right now it seems as if our little boo is tired. With that said I ask that you please keep him in your thoughts and prayers. I know your love and support will help reignite the fight in him that he needs to get well.
January 17, 2014 (8 days old)
Rejoicing with tears!! The MRI of his brain was NORMAL! This baby of ours is truly one in a million! Praise the Lord!! ✞
January 16, 2014 (7 days old)
And so Zacchaio's journey begins to rule out any congenital/anatomical anomalies...
Small intestines... Normal!
Keep it up, love! Awaiting MRI of the brain, full body skeletal Xrays, and thorough eye exam.
January 14, 2014 (5 days old)
1. Words cannot describe what it felt like to hold our baby boy for the first time. It. Was. Perfect.
2. We have added an oral cardiac medication in hopes of getting his heart rhythm more regular.
3. We still haven't tried feedings again since the last time he had digestive problems, however today his suck-swallow became SO strong!
4. As you can see in pictures, Zacchaio has somewhat of an odd appearance. They are diagnosing him with an epidermal nevus syndrome, most likely "linear nevus sebaceous syndrome." He has raised velvety patches of skin almost throughout the entire right side of his body without it ever crossing his midline. The patches are also entirely hairless. The condition is not hereditary and very rare and was a random gene mutation that occurred during conception. We are constantly praying he has only the skin condition and NOT the syndrome. If he has the syndrome he is very likely to have severe brain, skeletal, and eye damage in the future.
Every passing day a doctor makes their way to Zacchaio's bedside in amazement of the progress he has made, especially for a very ill hydrops baby. Zacchaio defied the odds of survival at birth and continues to fight for the right to come home to his family. We pray and stay hopeful he defies the odds of his skin condition, though we will courageously embrace whatever challenge God presents us.
Thank you for all of your messages, prayers, lit candles and beyond! God is good!
January 13, 2014 (4 days old)
1. He was extubated! No more breathing tube! I never thought I would be so thrilled to hear him cry! Hearing his voice for the first time was magical.
2. First round of attempts to feed him my milk via OG (mouth to stomach) tube didn't go as well as we had hoped. His bowels are still a bit sluggish so he wasn't able to digest any of it and it all came right back. For now feeds are on hold, however rest assured that he's at least getting IV nutrition. He's even gained weight! At birth he was 4.4 pounds with lots of fluids on board and today he hit the 5 pound mark!
3. His chest tube will be clamped overnight with a chest X-ray to be done first thing in the morning. If there is no additional accumulation of fluid, the chest tube can come out tomorrow! Why is this the best news of all? It means we will get to hold our baby boy for the first time!
4. He had to go under the bili lights today due to being slightly more jaundiced. He at least got a cool teeny pair of sunglasses out of the experience.
5. Your love, prayers, and support have inspired hope in us and true fight in Zacchaio. We love you all!
January 11, 2014 (2 days old)
1. He was switched from an oscillating ventilator (vibrating) to a traditional ventilator because his lungs are better! The great news is he's breathing completely on his own on room air, no oxygen needed. The ventilator just adds a bit more pressure every time he takes a breath. In fact, they're considering extubating him tomorrow! But let's not get ahead of ourselves...
2. Chest tube is still putting out some drainage but not too much to cause added concern.
3. His heart rhythm is looking a bit better with fewer pauses than yesterday. He's still on a Procainamide drip and they just added Digoxin. We're still hoping he converts to a more regular rhythm.
4. He got his PICC line (very long IV) in and has TPN (IV nutrition) and lipids (IV fats) running.
5. He's peeing like a rock star! (However rock stars pee...)
6. He's much more lively! What once was seen as a limp and fragile body now seems to have a little umph! He kicks and swings (gracefully, I must add) and managed to open his tiny beautiful eyes for me today.
Every day we fall more in love.
Love to everyone!
January 10, 2014 (1 day old)
Our little fighter keeps fighting :
1. He's maintaining his own blood pressure!
2. Increased output from both chest tubes warranted FFP (blood product) transfusion.
3. He's on minimally oxygen - rich air via breathing tube (practically room air).
4. No urine output yet...
5. Cardiac rhythm is strong but still irregular. Hoping he converts to a nice regular rhythm soon.
You are loved baby! Keep defying the odds...