I’m so proud of you my babies! This summer we rode bikes, you swam and (taught yourselves how to dive), learned to surf, ate too much ice cream, spent less endless hours with family and friends and had our feet in the sand everyday! When the things you dream of forever become a reality – I promised you we would spend every summer like this .. my hero’s my world you are my very best friends! Watching you live life inspires me and is pure joy!
Before we even made it to the NICU , you had to overcome impossible obstacles.
Our pregnancy was more than a surprise, it was miracle. The second daddy saw you on the monitor he told me you were the best thing that happened to us and he was right. You were the piece we didn’t know was missing .
When we found out the boys shared a placenta we went to our first MFM. At only 8 weeks pregnant , he told us it was highly unlikely we would have two healthy babies. Maurice’s umbilical cord only had two vessels ( instead of the “normal” three) and it was “hanging” off the placenta. He was also 90% smaller than his identical twin. I can still hear his voice saying, ” on your next visit it is very likely there will only be one baby and possibly none.” The plan was nothing. There is nothing you can do he told me… just wait .. I couldn’t ..
I search .. joined every group .. and desperately went to our second team in another hospital .. one of the top MFMs in the field. Now again barely 10 weeks.. the same if not worse grim prognosis.. but this time it came with a “treatment plan.” Selective reduction. Terminate the “little baby” and save the big one. It was more than an option .. it was recommended along with stats on “how good the hospital is at it”… by occluding the cord of the small baby they could save the larger baby. The smaller baby did not appear to be growing .. the cord and the placement of it all went along with the reasoning on why it should be done. If anything was to happen to the small baby on it’s own they told me the blood would rush out of the larger one and they both wouldn’t survive. It was scary.. and convincing.. but I couldn’t do it. I made an appointment to meet another member of the team. ” The best of the best “, I was told. Now at only about 12-14 weeks the prognosis continue to worsen. On regular ultrasound they saw a cyst in Maurice’s brain. She said it was likely dandy walker and my little baby would be severely disabled. “I would like you to meet with the neurologist that cares for babies like this so you can understand… ” she told me .. and Again “selective reduction” was discussed now even more .. she said “at this point most parents would scrap the pregnancy and start fresh.” The words are scared into my heart. I left again still could not do it.. we returned this time seeing the other partner. They started with Peter. The ultrasound tech completed the exam and he started it. “How did you not see this..”. He said to her.. going over and over peters face. “Look at his jaw.. it’s recessed and his heart titled. ” At this point there was no more meeting in the special conference room .. now it was simply said as , you likely have a genetic condition given your age and other risk factors being expressed differently between the boys. We also had a fluid imbalance and at this point I have severe ttts symptoms. Shortness of breath , uneven belly , even contractions.. what about the TTTS and fluid I asked him… and his answer was direct and simple.. “we don’t operate on unhealthy babies.” This is when our angel stepped in .. first Mary from the tts foundation .. she directed me to Dr Ruben Quintero. Palm Sunday a stranger saw one of my posts and sent me his cell phone. I called him and he answered. He told me ..”Lisa I cannot promise you your babies are healthy but it’s unlikely that they have a rare genetic disorder given your other two healthy children “. “Come see me and we will do the tests and I will do everything I can to help you.” He spoke to me for a few hours.. educating me on ttts and how these tests are interrupted. I told James that night that I needed to go to Miami and see him. His reply was so simple.. what’s a trip to Miami then we go. We went .. saw a pediatric cardiologist had a fetal echo .. saw a neurologist and had a brain mri in utero .. and yes there was a cyst but they believed it to be benign meaning that it would simply go away on its own and yes peters heart was tilted but it was still within the normal limits .. and nothing at all was wrong with his jaw. He did more specialized tests and did see signs of ttts but it was not yet needed surgery. We flew back home and started our journey… our path of hope.. finally given to us by this incredible man.. the next few weeks we were back and forth on planes juggling Mia and Juliet as best we can thanking god for my mom dad sister and brother in law who acted as a second family ensuring the girls never felt once minute of it. At 26 weeks ttts caused my body to think we were ready to deliver. Connecting blood vessels in the placenta resulted in Peter having fluid overload, heart and kidney failure and Maurice losing all his fluid shutting down his kidneys completely. When left untreated most babies do not survive. Maurice did not even weigh a pound. Delivery at that point would have been devastating. Although i was already past the deadline for the traditional ttts surgery.. dr Quintero agreed to see us. I flew to Miami that night , he operated in the morning and we were able to give the boys a few more weeks to grow. Our case required a very specialized technique that I know would not have been possible elsewhere. Dr Quintero is a pioneer in this field. A few weeks later, ttts returned and it was time for them to come into the world. We had no idea what the future would hold .. both in severe heart and kidney failure.. barely weighing a pound.. but they had already overcome so much and I knew angels were watching over them.. I prayed and shared our NICU Journey which helped me heal.. from the first day of summer to the last we lived in the hospital .. I sat and watched you my miracles.. i kept picturing us living the life we have today.. running in the beach .. praying for first you to breathe then drink.. then walk and talk.. seeing you with your sisters and cousins.. my god how I love you and this life you have given me …
Our road was not easy .. therapy and drs visits filled our first few years.. it felt like I was living two separate lives.. one with my sons watching them grow and suffer in boxes and then home to my happy girls ..we had a number of scary diagnosis but I learned to trust my gut and I know we have such a special connection. Having a friend experiencing it along side me meant everything .. Devan thank you is never enough.. my husband you are everything to us.. the last few weeks when Maurice was ready to come home leaving his there became too hard.. the emotional rollercoaster of the nicu is difficult to describe.. one day or 100 it’s a nightmare.. I questioned everything .. how the machines worked .. knew every drop of what they gave you .. every single wire placed inside you.. i your hand.. you never gave up and neither did we… your courage gave us strength … I promise you were never alone.. Today you are healthy and strong
I share your story to give others hope
To help educate about ttts and Dr Ruben Quintero at the fetal institute and of course Mary and the ttts foundation. If anyone you know if pregnant with twins that share a placenta or if they are going through a hard nicu journey I am here. Helping others helps me heal.
It was the stories from others experiencing they same thing that helped get me through.
To thank my husband for always believing in us, my family for always supporting my decisions .. for loving us so much. To thank my father for standing beside me driving three house a day for three months while I was in the nicu. To share the power of love prayer and miracles ..
to celebrate you my boys .. my heros
An incredible woman told me ..
“I believe God will reveal to you what He wants you to do to give hope to unborn babies.”
You don’t always choose your path. Your path will choose you. What would happen if you started to truly believe that? If you believed that you are guided by a higher power to always end up exactly where you need to be? If you knew that your “path will be revealed..”
If you gave up on the anxiety and stress of planning every minute of everyday .. because let’s be honest.. life doesn’t always go according to your schedule. Could you stop worrying about what could have been yesterday or years ago? Is letting go of that control a possibility? Could you free yourself of old regret? What if today is a fresh new start and you begin to live in the present, the now. You may want to get healthy or heal a damaged relationship .. and what if there was no other time to do it except this moment. What would you be set free of.. self doubt , worry , panic , depression from things that happened in your past? You drop your old baggage.. and just like that the heaviness is gone… you become free and immediately lighter. Clear out the negative people and clutter. It’s a choice you can make. No one deserves to suffer or grieve. But even in your darkest moments could you believe there was something more waiting for you on the other side of it?
If you trust, have faith and live in the present, could you get out of your head and hear your heart speaking to you. Connect with your soul… that piece of you that is your true self.. free of ego, masks, affectations, and pretensions. It’s the most authentic version of who you really are. To find it you must be open, vulnerable and accepting. Regardless of the world around you, your true self will always remain stable. When you connect with this .. your path becomes clear. You become grounded.
Take a minute to think about what that would look like for you. How would your world change if you truly believed the universe was always in your favor? Is there the possibility of creating more with your life just by shifting your prospective? Did you ever notice that you can’t make every detail perfect.. or that the best days and memories are always the spontaneous ones…Imagine that you are being held and supported by something bigger than yourself. Something that loves you.
Tap into that bright, blinding energy that radiates from inside you. You always have free will .. multiple paths will show up.. but that light from inside, when it shines bright enough.. when you are connected strong enough .. will always lead you down the right one. Learn how to turn it on and keep it that way. For me it’s something I am conscious of and practice everyday. I still haven’t found the permanent on switch but I’m getting closer.
Everything you think, say or feel becomes your reality. When we found out we were pregnant with twins, one of the first things my husband said to me was, “This is the best thing that ever could have happened to us.” Despite the endless challenges we were given .. and multiple roads we could have chosen… that became my mantra. I believed they were given to us for a reason and I would never give up on them. I believed they were the best thing that could have happened and I would fight for them endlessly. This was my reality. My sons would be with me ..strong and healthy. I made their nursery very early on and passed their cribs every morning picturing them there. I was as vulnerable as I could possibly be .. I was completely open.. I had no choice… I was desperate. My mother’s instinct was at an all time high.. and I was never more connected with that part of myself. I had no other objective or motive but to save my sons lives. I reached out to everyone and anyone. I prayed and put faith in angels. I somehow knew who to trust. I didn’t see a glimmer of light until I was at my very darkest.
Only in the dark can you see the stars. Sometimes it takes losing everything to reconnect to that inner self and to shine light on the right path. It was not the easiest one.. it was by far the most challenging. It took much more than just positive thinking .. by only 26 weeks old and still pregnant our sons had already seen almost 10 Maternal Fetal Medicine Specialists at 5 different hospitals, underwent 3 brain MRIs , multiple fetal echos, saw two pediatric neurologists, Pediatric cardiologists, had Chorionic villus sampling and underwent TTTS surgery after traveling 7500 miles back and forth to our doctor each time leaving my other two children home. Even their TTTS surgery was unique and I am so thankful we found Dr Quintero. We ended our last trip with an ICU visit for a few days right before coming home and then delivered at 28 weeks and finished it all with a three month NICU finale. None of it was easy. It was a nightmare. But I always knew it was the right choice. I knew no matter what happened I did everything I possibly could. I had hope and a miracle worker for our doctor.
Writing has become a great tool for me..every now and then my mind pulls me back … but these words that I write are a reminder to keep looking forward. To keep my thoughts positive remembering that like attracts like. The better your thoughts, intentions and goals, the more likely you are to have the same good come to you. You become a magnet for the same energy you project. The law of attraction is a real thing.
The people I have met along this journey have been miracle workers. Many strangers turned into best friends. Others have inspired me in so many ways. Some have suffered the greatest pain imaginable. They lost their babies. Yet, they choose to turn their grief and heartache into something beautiful. Their strength and courage are beyond words. They honor their angels and dedicate their lives to helping others in their memory.
I look at the gifts that have been given to me and the heros that brought them into this world and know my path has been chosen for me.
I started working again. A work that is not valued on money. A work that heals my soul. A work that will help save lives. It’s part of what I need to do to keep the right paths illuminated.
Your path will reveal itself. The road to it is many times jagged, dark and terrifying. But there will be that tiny voice inside of you telling you to trust. Quite your mind and try to listen to that voice.. the more you listen to it.. the louder it will get. Soon that tiny voice will grow into a scream … it will become so loud that it’s all you can hear. It will wake you up at night and set your heart on fire. You will have no choice but to listen. Remain open .. you will become more alive. The world will look different.. brighter .. your energy will start to attract like people into your space. The pieces will all fit together and the broken scary road will begin to revel more beauty than you could ever have imagined.
Three years ago on my birthday I was preparing for fetal surgery and our fate was unknown. Today my sons are here and healthy. I know I have been gifted miracles. My birthday wish is that our journey helps another mother find the path that leads to her miracle.
I know I’m exactly where I’m meant to be and I’m so grateful and humbled to live this life.
Photo credit Daria Kielek photography
In honor of Briana Maire🦋 all the other heavenly angels 🦋 and their families.
And my nanny our guardian angel
Read to your baby in the NICU,
It’s what the people in white coats say to do.
Let them hear your the sound of your voice
Let them know that it’s you.
Your mommy is here,
My precious sweet love.
I pray the sound of my words gives some comfort and reminds you of the power from above.
It’s nothing like we pictured.
A hospital room is not meant to be home.
But know I’m here beside you
In this NICU You will never be alone.
Though my arms are not always around you tight my heart lives in yours.
I am with you everyday and each night
If we are here ..
or a million miles apart
We will forever be connected
Unbreakable by the heart.
I’m standing right beside you
Feeling helpless,
there is not much else I can do.
I’m going to listen to their advice.
Read this book with faith
and hope it’s the right thing for you
We will drown out the beeps of the boxes and endless hum of the machines..
Please Listen to nothing else.
Just focus on my voice.
Today I promise you something,
I’m going to make a very special choice.
If I’m standing next to the plastic box or holding you skin to skin,
Let’s close our eyes together and and believe
There is no other option but to win!
I choose to see you as you will one day be.
I will do everything to focus on that image
and only listen to my soul speaking to me.
The mask, wires and tubes are just a disguise
I know that what I look into your eyes …
You are going to be so strong.
Everyone who loves you
believes in you
We all can’t help but agree.
It tells me to see you so incredible,
healthy and free
One day you will
breathe on your own
you will eat without tubes
sleep in a crib.
One day you will know your family.
You will know how much they love you
You will know the warmth of the sun in place of this phototherapy light
You will know the feeling of sand between your toes and forget the IV needle in your feet
You will breath fresh spring air without a CPAP machine
Your heart will beat strong without caffeine and medication pumping it along.
One day your tiny fingers will paint a masterpiece
And your faint cry grow to sing beautiful songs.
One day those small legs will dance on the most beautiful stage or score the best winning goal.
Maybe you will be a doctor and practice what has healed you …
Maybe an astronaut
but it know it doesn’t matter
whatever you love to do
You will find it .. or sometimes it just finds you!
The greatest gift I’ve been given is to watch you grow
You are a miracle from head to tiny toes
We will make this promise our anthem
I’ll speak it out loud everyday and make the words true
We will see the miracle
In Every single tiny thing you do
We will celebrate them all
no matter how small
And when we need them they will be there to help bring faith
and lift us when we fall
While we are here
I promise to be brave.
I’ll find my strength in you.
Mini and mighty
Promise me You will keep fighting
and I promise I will too
The power to see miracles .. not many get
To have this gift.
But this journey makes it so clear
There is a reason you are here
I’ll read to you my baby
Every day and night
Soon enough next to me in bed
while holding you so tight
We will make this promise our anthem
I’ll Speak the words out loud
and make them true
We will always see the miracles
In every single tiny thing you do
Here they will live a book of your miracles
It will be a reminder
Of how far you have come
And help heal us on the hardest days
And be a reason to celebrate on the greatest ones.
With faith and love all things are possible.
I love you ,
Mommy
This is Peter & Maurice .. my TTTS survivors .. my miracle babies .. I know that they are here because of faith ..love ..prayers and of course..Dr. Quintero.
From the moment I held them in my arms, I knew they were going to incredible things in this world!
All of us have babies that have beat the odds🙏🏻❤️
All of us have witnessed miracles.
We are connected.
Together we can do such incredible things .. inspired by our babies.
My intention is to get our stories in one place. A book.. a book that will donate ALL profits to benefit Dr. Quintero’s foundation .. and provide financial assistance to any families who need help to pay for the cost of his procedures or care.
It will be a collection of stories as told by the parents. As told by us… the stories will spread awareness and celebrate our babies. It will also highlight Dr Quintero .. explain why not all MFMs are created equal.
It was other mothers that encouraged me to go to Dr. Quintero. Seeing the faces of their survivors and hearing their stories. We can change the lives of so many.. and give back to the man that has changed ours.
This is my passion project .. my dream .. knowing we can help even one mother turns our babies stories from struggle to hero ❤️
Please
Join
Me
I invite you to write your story.. as a stream of consciousness .. no attention to grammar or spelling .. don’t think about it just put pen to paper or start typing and your heart will start talking .. when the heart talks .. it connects
Your heart has its own language it will come from that place .. your soul..
I want our stories to come from there .. I’m not a writer .. I’m a physician assistant.. and now mom of 4❤️ but I know my boys and their story is powerful and Can help others.
I see this book doing amazing things .. thank you so much for taking the time to share with me and to help support Dr.Quintero
Please invite any other families who you know that may be interested in participating 🙏🏻
Email me at babyaandbee@gmail.com
And join my Facebook group called Quintero’s miracles if you would like to be a part
https://www.facebook.com/groups/2521082644854147/
I believe in miracles because of you my sons❤️
From the first few weeks we were told it was “unlikely we would have two healthy babies..”
Our first mfm told us there was nothing we could do but sit and wait ..
We found a new doctor..
the next Mfm group told us we should “ just start fresh” and that Maurice would never live a “normal life”.. that Peter had a severe heart condition.. that his jaw was malformed .. Maurice had a brain condition.. even more so told us that Maurice was “hanging off the placenta “ and was 90% smaller than Peter.. the first option was “selective termination” basically trying to convince me that continuing with Maurice was putting Peter at risk ..
they were given no chance .. I was told
when I started to developer symptoms of twin to twin transfusion syndrome that “ we don’t operate on unhealthy babies…”
I prayed .. We found a new doctor ..
I found Mary .. the TTTS foundation and Dr Ruben Quintero .. from the moment I heard his voice I knew he could help us .. he didn’t promise a miracle but offered hope and genuinely cared about me and my babies .
We went to Miami to the fetal institute to see Dr Quintero .. once .. hope .. twice .. more hope .. then. I went into labor.. I was barely 26 weeks the boys were in severe distress from TTTS .. I took meds to stop contractions and flew back to Florida ..Dr Quintero performed fetal surgery and separated the connecting blood vessels between the boys while they were still inside my belly . When he tried to separate them he found their connecting vessels were so big .. that if he was to do the usual surgery they both would have not made it. He also explained that if I would have chose selective termination ,as advised early in the pregnancy, I would have lost both my sons. He performed a Supra selective procedure and had to balance their blood flow instead of fully separating it.. it’s a rare occurrence.. but we were lucky enough to be in the hands of an angel.
Right after the surgery the TTTs started reversing.. we were able to make it back home and continue the pregnancy until 28 weeks.
It was then that our next journey started .. the Boys were not just small and early but they also had residual effects of twin to twin transfusion syndrome .. both of my sons were born in heart failure and kidney failure ..
All we could do was pray .. the Niuc is an endless rollercoaster of good days and bad days .. the bad days are so so bad .. to watch your baby suffer .. to not be able to be a mother .. to leave them there .. it was the hardest experience I have ever had ..
but through this .. you are transformed ..
You get to see with different eyes
Your child breathing
Your baby eating
The most mundane things become renewed into something surreal .. something magical ..
When I look at the pictures .. I can still feel the cold chair .. still hear the endless beeping .. every time I smell hand sanitizer I’m transported back …
And now I look at them ..
I look at how perfect and how beautiful they are .. and I can look at this journey in a new way .. I can appreciate the renewed vision of life it’s given us .. and above all the power to believe in miracles.
We are so blessed to be where we are today.
This day I send my thoughts and prayers to those who have lost their babies to TTTS and prematurity ❤️
Thank you to Dr Ruben Quintero our hero
I share my story because There may be someone who needs to hear it … my sons were saved because of others sharing their story with me
Especially Yvonne and Jennifer and I never would have made it through the NICU without you Devan ❤️
My angels .. I’m lying between you.. like I do every night.. listening to our favorite songs holding your hands so tight.. hearing stories of your yesterdays and dreams of your tomorrows ..
I love you mama
And I adore you my beautiful baby girls
My girls someday you will truly understand.. you will hold a little hand..
I’m your biggest fan I hope you know I am but can you somehow slowdown .. maybe just a little ❤️
THIS IS OUR HAPPY ENDING
AND BEAUTIFUL NEW BEGINNING
ALL IN ONE !!
I’ve been dreaming of this moment since I first heard this incredible man’s voice at 15 weeks pregnant.
Before him.. there was no hope. We were told Maurice had a devastating brain disease and that Peter had a severe heart condition in additional to facial abnormalities. They told us my sons had “multiple congenital anomalies” and we were told from a very well know maternal fetal medicine specialist at one of the best hospitals in NYC “ at this point most people just SCRAP the pregnancy and start fresh.” On top of all this the umbilical cord was missing a vessel and Maurice was 75% smaller than Peter and hanging off the placenta. We were in the very early stages of twin to twin transfusion syndrome and I had an anterior placenta ( this can make the surgery more complicated) Each visit , 3 different maternal fetal medicine specialists at the number one hospital in Manhattan continued to give a more horrid prognosis. When I asked about my developing twin to twin transfusion syndrome I was told bluntly “ we do not operate on unhealthy babies…” As the doctor walked out of the room. That was when I broke. All of this was only diagnosed through very early ultrasound. These conclusions they made were without a fetal echo or brain MRI.. yet they continued week after week to stress that my babies were suffering from “some genetic abnormality being expressed differently between them” and It is highly unlikely I will even have one healthy baby. It was made very very clear that at the very least I should “selectively reduce “ aka abort Maurice my baby B in order to “ save baby a”… after a few more weeks even that was seen as a poor option because of the heart condition they “saw” in Peter.
We were given no hope ..I desperately pleaded to other mothers who had similar complicated twin pregnancies in a social media group. I called the TTTS foundation and spoke with the founder Mary. I was given Dr Ruben Quintero’s cell phone number. An angel messaged me late Palm Sunday night and said “ if anyone can help you .. it is him.” I called and he answered. He spent over 2 hours talking to me that night… he said “ I cannot promise you your babies are ok.. but I will do everything possible.” There was no false hope … he gave me facts and educated me about the disease .. there was kindness and such humanity .. such love… how much his work meant to him… how much his babies meant to him. It was the first time anyone told me that they may be ok… it was the first time I was able to image holding my sons in my arms.
I almost didn’t believe it and called back the next day so my husband could hear … James knew as well .. we had no other choice but to go to Miami and meet Dr Ruben Quintero. We were on a plane that night and saw him first thing in the morning.
That choice will forever be the moment that changes our lives. Our sons are here because of him.. because of his incredible team…
He is genius a Yale graduate known for creating the field of operative fetoscopy. He develops surgeries that can be performed in utero. He has invented serval surgical procedures including the amniopatch and SLPVC ..the surgery that saved my boys when they suffered from twin to twin transfusion syndrome. His latest is a fetoscopic repair spina bifida. His inventions and new surgical techniques gives hope to people who have none. He saves babies. Because of him they are given a chance … and women given a chance to become a mother. It is his passion … and his is a genuine healer and we are blessed to have found him.
There is not a day that goes by that I don’t thank God for him and for my miracle babies. He is not only their doctor but also a friend. He has true joy seeing his babies grow.
This is the moment when we all met our superhero. This is the moment I have dreamed of for so so long. The amount of gratitude we have for him can never be put into words. We are planning a reunion for all the mothers and babies he has saved.
Thank you Dr Ruben Quintero and Dr Eftichia Kontopoulos for you devotion to medicine and to our babies. We are so blessed.
I dreamed of you growing ..
you were so so small
And dreamed of you breathing ..
without endless tubes plugged into a wall
From there …I prayed
Your heart would keep beating
Our moments together in the NICU always felt so fleeting
Finally you came home …
our life was so complete
Your beautiful sweet sisters and cousins here for you to officially meet
And I began to dream again….
Of the wonderful things you would do
Would you be able to walk, stand or crawl ..
no one could tell us still ..
I dreamed even more … prayed..
And sometimes just wished
That the day would come
When you could walk over to me
and just simply give me a kiss
My incredible darling sweet boys
I can see it now
You are crawling and standing
and it’s all a miracle how ..
How I always saw you in dreams …
It is all coming true
There are no words
Just WOW to all that you do
I believe in miracles..
I have no doubt that they are true
I believe in angels
I know they sent us the wonder and beauty of you
To our angels that saved our life especially Dr Quintero
To our hero’s that supported us along our fight
I know miracles are true my boys because I have you ❤️
To all the mamas in the NICU NEVER LOSE HOPE and to my precious boys I love you more than you could ever know
Peter James 1170 grams twin A ttts recipient 52 days in the NIcU
28 weekers ( Peter (1170grams)!on the left maurice (790 grams)! on the right
Thank you so much Deana of Bellacosa Photography for these captures I will forever Cherish https://www.bellacosaphoto.com/
Peter & Maurice 