Please help us help them
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
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/
Always safe in your arms
Peter last year to the last picture peter today❤️
your dad would be so proud of the son, husband and father he made !
Thank you to Papou for these gifts and all our blessings I know you are always with us❤️
Tomorrow we celebrate you my boys💙💙
You be surrounded by so much love.. your God Parents, grandparents, aunts and uncles, cousins, friends and family.. they will all fill the space with such happiness and joy.. it is such a beautiful feeling. The room becomes radiant.
The day is special for so many reasons..
It is your first party and only 9 days away from your first birthday (you will learn we love a good party and will find any little reason to celebrate)! And this party we get to have alongside Jonathan! The relationship you share with your cousins is indescribable. You will grow together and this is the first of so many milestones. Your auntie is my lifeline.. my very best friend. I pray you and your cousins will always cherish each other like siblings and have the same bond we do.
In a few hours, you will be baptized together. We will officially welcome you into the Catholic religion.
In my heart, what this truly means to me, is that we are giving you the amazing gift of Faith.
The gift of Faith gives us a conviction of things not seen..
it allows you to believe even when things don’t make sense.. when you don’t have anything tangible to hold onto.
You can’t see it, but it is as real to you as if it were visible. You understand things that defy human logic.
It allows you to believe in something more powerful than yourself.. to believe in miracles ..
It is the kind of faith that can provide Devine protection from danger.. the faith that can move mountains. It is what you call upon when you need prayers from Nannie. It is healing. It is love.
With this power, your life expectations are transformed … The Bible even says, “All things are possible to him who believes.”
But I find it so ironic.
We are gathering to give you this gift .. this incredible power..
when, in reality..
YOU are already the complete embodiment of it.
You , my beautiful sons, are living miracles.
From the very first moment, I “saw two” .. you shared your gift with me and everyone around you.
You have given me a renewed faith.
I knew you were meant to be here. When medicine and top experts told us otherwise ….I could see you here with me in my arms
we did not give up..
I knew it with every piece of my heart…
You would grow to be strong and healthy.
I believed it. Your daddy believed it. Even after losing Papou, your guardian angel, he was always a constant strength. He juggled work, setting up offices in our multiple hospital rooms, so he could always be with us. Without hesitation .. your nana and auntie took care of your sisters and gave them so much love so we could fly back and forth getting the best care in the world. They all supported every decision no matter how crazy it sounded or how much more work it meant they had to do. Your papa even sat by our side everyday in the NICU so I could be strong for you.. thank you will never be enough .. all of you .. it had to come from above.
Angels appeared and helped us along this journey. Strangers supporting us becoming friends.. Dr Quintero was the first to give us hope… Later.. more Angel healers, like my Joan, would come into our life and give us strength.
We had to trust and believe in things unseen .. choose to take risks no parents should ever have to take.. but we did it all ..because We. JUST. KNEW.
Tomorrow as I watch the priest pour the holy water on your heads and bless you.. as I watch you receive this new gift from the Holy Spirit .. the miracles and wonders of faith ..
the truth is …your own lives ..
from the very first moment you existed ..
is the pure expression of it.
You are FAITH. You are LOVE. You are MIRACLES.
I continue to share your story in hopes that people are inspired as you have inspired me.
My babies, I pray today and always, you truly receive these gifts and that you always believe something incredible is about to happen.
As we all go along thinking we are planning our life.. remember to try and let go and believe that god’s plan is better than anything you could have ever imagined. Just breathe and believe.. all things are possible to him who believes!
I love you both so much thank you for the gifts you have given me❤️ May God continue to bless you always
“Every good and perfect gif is from Above” James 1:17
Boys Custom Baptism Outfits: https://christiehelene.net/
Photos: Bella Cosa Photography: https://www.bellacosaphoto.com/
This tiny scar ..
how something so small could represent so much❤️
one year ago today I knew something was wrong .. I couldn’t breathe .. I had contractions.. I was in labor.. I went to the hospital .. the ultrasound confirmed ..
it we had TTTS. ..
Peter had so much fluid and was in heart failure ..
Maurice , weighing less than a pound , had nothing and was “stuck. All of his organs were failing as well… we had two choices deliver immediately or fly to Miami to our miracle doctor. If we delivered the boys had a very low chance of survival . They were in so much distress ..
I just remember praying .. so so hard..
That night they gave me drugs to stop my labor and we flew.. the next morning one year ago today I had a life saving surgery by Dr Ruben Quintero. In less than 24 hours peters heart normalized and Maurice’s kidneys began to work. We were able to continue our pregnancy and our boys gained vital time to grow.
It is this little tiny scar .. this permanent mark .. a forever reminder of their strength and our angel Dr Quintero💙💙 #tttssurvivors
There is a saying,.. “Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” ….their joy, happiness, sorrow.. you experience it all simultaneously with your baby.. your hearts beat as one. Any mother can tell you …their smile fills you with more happiness than your own.
..but unfortunately, at times life brings more .. there is also pain. When your child is suffering it is the most excruciating visceral feeling you can imagine….It’s so deep .. it’s unbearable. Words cannot do it justice.
For the past few days, my sweet Peter has been suffering. His brain has been sending abnormal signals to his body causing uncontrolled movements putting him at significant risk. The episodes are brief ..he cries and stiffens up for a few seconds. It doesn’t look like anything more than a little temper tantrum or “colic.”
The last few times he was on his belly.. his legs extended and his arms flexed….he was crying .. but he is learning to crawl.. it’s that what babies do when they learn to crawl? They kick out their legs?? They get frustrated .. they want to be held.. especially my Peter.. my snuggler.. he loves being held and is always a little resistant to prolonged tummy time. It can’t be anything bad.. he looks so good.. he’s getting so much better .. how could it be anything bad.
My mom was the first to notice it. She told me she saw him “acting a little funny” .. he “wasn’t himself for a few seconds”.. at the time he also had a cough and runny nose. I didn’t make much of it .. he was playful and eating .. everything seemed fine. The next day she said she saw it again.. it was quick and he was on his mat when his head went down and legs extended for a few seconds. Now I’m starting to get concerned, but other that, and his little cold, nothing seemed different. I called the neurologist and her nurse told me they will put in an order for an eeg to measure the electrical signals in the brain and mri to check the structure and she gave me the numbers to schedule the tests. I immediately called both numbers .. no one answered and I left messages. She didn’t want to bring me in and said the next appoint was months away. “Just try to get it on tape” she said over and over. His personality, eating and sleeping habits .. everything was all the same.. if they are not that worried I guess it must be ok?
The next day my mother said she saw it happen about 5 times.. now my mind starts running .. repeat episodes .. I feel sick and I’m scared. It’s starting to sound like something .. something very very bad. I sit by his side and watch his every movement.. and then I see it happen.. he’s playing and suddenly starts screaming and crying.. he stiffens like a board .. opposite extremities extended.. it lasts seconds .. the crying continues for about a minute but the actual stiffness is brief. Unless you are touching his muscles it is almost impossible to recognize what is going on. I am able to get it on tape. And just as fast as it came .. it went.. he was back to his normal self playing .. eating .. maybe spitting up a little more than usual.. maybe when I start to look back .. but he was also congested from his little cold. It can’t be .. it just can’t be…. it was late .. my plan was to call neuro again in the morning. How my mother picked up on this .. she told me “I know him .. something is going on. ” The only thing better than a mother’s instinct is a nana’s! Thank god for her.
We had an early therapy session that morning. I show our angel therapist who knows Peter since he came home from the NICU. She’s also very concerned but can’t tell much from the video. Watching it again with her it really looks like nothing. If they won’t see you sooner just go to the ER”, she suggested. I value her opinion. Call your pediatrician and just go! She educated me on the different types of seizures in babies and explained that even those brief little movements could be something very dangerous. We have our therapy session at home as usual and Peter is his normal self. There are no changes in his ability or tone.
Right after, I call to schedule the eeg again like I was advised to do by the neuro nurse. “We don’t have an order here for you”.. they said. Great no order .. so I can’t schedule.. “our next appointment is sometime late next week if you can get the order we can do it then” …ok .. Again, I call the neurologist and I get the nurse .. I sent the video .. she tells me they didn’t get it. I told the nurse no order was put in and she again told me she would take care of it and to just call and schedule. I couldn’t wait anymore.. day three of me calling .. the same concern my 28 weekers preemie may be having seizures.. ( but his eyes aren’t rolling back and it really doesn’t look like a seizure .. so it can’t be that bad right?) it’s getting worse I need to speak to the doctor now. Day three and I still haven’t spoke to his neurologist. Reluctantly she told me she would have her call me.
A few minutes later .. it’s our doctor. She’s concerned and suggested going directly to the emergency room. She told me she would call ahead and have neurology ready to admit us and do a three day video eeg monitor. They would check the electrical activity in his brain with the eeg and have a continuous video to compare the readings on the eeg with the actual body movements. She also suggested they would do the MRI of the brain to check for any structural abnormalities.
I bring my baby boy to be admitted to the hospital. Every single thing .. from the smells to the florescent lights brings back the horror of the NICU. I’m so afraid for my boy. I. D.o.n.t want to be here.
We are admitted.. he is brought to a room and tiny electrodes are glued to his head. It’s wrapped in a long stocking and connected to a fanny pack. He hates it. He is so uncomfortable. The camera follows him everywhere. I’m stuck between praying it happens so they can actually see what is going on and wishing I am just overacting and there is nothing at all. I make James stay home to watch the rest of our tribe. “I’m fine,” I keep telling him. He saw the video as well and thought it was nothing.
We got lucky the doctor on call was the head of the pediatric neurology department. I meet him and immediately have a sense of relief. “He looks too good..” I know I know I was thinking the same thing !! He looks so good it can’t be…
A few hours later the nurses change shift. The new nurse comes in to meet us and Peter starts to suddenly cry… it starts. He is crying.. he stiffens .. this time it’s worse and his eyes flicker.. I tape it .. I just want to make it stop .. the eeg and video is recording his every move… is it a seizure?? .. the nurse is not sure either.. I press the button .. they tell me to press a little red button any time I think there is an event to highlight it on the report. It’s quick and he’s back to himself. The nurse reassured me the doctor sees everything happening. Ok. No one else came in.. maybe it is really nothing? This was about 8:45.
He finally gets comfortable and falls asleep. It’s now 11pm. He’s in his crib doing his usual tossing and turning when a resident comes rushing in. “The Doctor is watching from home and said he’s having multiple seizures. He needs medication immediately to get them under control..” I call James.. I need you now. My mother stayed so James could leave. What is it ..what type ..what is happening, “the doctor will explain it to you in the morning..” she said .. “right now I have to give him this medicine to make them stop”. She continues to tell me in the morning he will need to be sedated to have an MRI. She answers all questions with the doctor will explain more in the morning. I just held him .. crying.. praying his brain is ok.. praying .. just praying the same prayer I have prayed over him 1000 times before.
The next thing I know James is with me. His presence immediately gives me some relief. I watch Peter’s every movement… holding on to the button and pressing it with every little twist and turn. Every cry .. can that be it.. is something happening .. it’s pure panic.
The next morning the doctor comes in and explains Peter has epilepsy. His brain is sending abnormal signals. We sedate him for the MRI and the results come back almost immediately… normal .. “that’s what you want”… the doctor tells us .. “the best situation is having no reason at all….if you find a reason it’s usually a much worse prognosis. ”
No reason.. none. His brain is normal.. they just happened out of no where… it’s almost impossible for me to accept. The why’s and how’s just keep circling.
His plan is to monitor him on his new medication and as long as there is no seizure activity we go home. You can live your life as you usually do, he said .. no restrictions at all.
After a few days, here we are.. home. It seems that the medication stopped the seizures. His eeg has been normal and we will just continue this medicine. It’s almost like a bad dream. There is even some hope that in a few years, as long as he remains seizure free, we may be able to stop it. Please make them stop.
I’m so worried about my beautiful son.. I do not want to take my eyes off him. The doctor reassured us that his prognosis is as good as it could be. He has no signs of cognitive delay and no signs of brain damage on any of the imaging. God please make it stay this way. You are so incredible and so strong my perfect son.
I feel you my precious boy…. not only your struggles .. I feel your love and strength . I am so proud of you … my heart and yours are forever entwined ..a reason to hold you even closer now
… it’s ironic how you need sadness to know happiness.. noise to appreciate silence and absence to value presence..
We will not take a single moment for granted .. you are our gift… our miracle.. our greatest decision.
I am able to stand stronger
because you hold me
I am able to love deeper
because you love me
I am able to have faith
because you believe in miracles
I am able to see beauty in everything
because you show me
I know the meaning of family
because you teach me
I am able to succeed
because you are my cheerleader
I am able to be the mother I am
because I am blessed to have you guide me
Happy birthday to my angel mother
My best friend
I pray I give my children the same gifts
you continue to give me
You are the center of our world ❤️
the glue that holds us together ❤️
I love and appreciate you more than you will ever know