Your Beautiful Perfect Heart

Last March at only 17 weeks pregnant I was told my boys were not going to survive. They said Maurice had a devestating brain disease and my “healthy baby” baby A (Peter) had a very bad heart .. along with unhealthy blood flow -abnormal diastolic flow- .. they said his face was distorted and his jaw very small.. in light of the other issues going on ( Peter was 100% larger than Maurice) .. I was advised termination and told Peter would not survive because of his heart condition.. Columbia told me they had a “genetic condition being expressed differently between the two boys”…. they would not even address the twin to twin transfusion syndrome because “I did not have healthy babies and the surgery was only to save healthy babies “.

..by god’s grace we never gave up and found an angel doctor who assured me the boys would be ok.. although Peter was in full heart failure at delivery .. his incredible body has now completely reversed any sign of damage.. his aortic stenosis which was very close to requiring surgery, his left ventricular hypertrophy and his PFO all gone.. nothing.. just a NORMAL PERFECT HEART ❤️ aortic stenosis does not just “go away ” like that … but what they think happened was that the enlarged heart was so significant it made the valve look worse than it really was. His heart had to pump against all the extra blood and fluid for so long . He was the recipient in the transfusion syndrome.. causing his little body to have an overload and his heart muscle having to work much harder than it should have. The extra work caused the muscle to grow. The valve’s malfunction was a direct result of the thickening ( not true aortic stenosis) Now, that his heart doesn’t have to work as hard, the muscle was able to relax and returned to its normal size. The valve also now appears to be working as it should. We are very very lucky.

I cried the happiest tears .. Peter is officially a cardiac graduate !! 💪🏻❤️

Maurice still has a little more to go but he will ok! Soon enough xx how I prayed for this child ❤️ Dr Ruben Quintero with all my heart thank you.. for never giving up on my sons

We flew to Miami and Dr Quintero had set up a meeting with a Cardiologist. i will never forget her voice or what she said.. ” your son is going to be ok…” She explained he had normal variant and it was nothing to be concerned about. I must have asked the same question 100 times and her response was always the same.. he will be ok.

And yesterday I heard those same words again.. he is OK. Normal .. Perfect… it’s impossible to put into words what it felt like.. i know angels are watching.. my incredible miracle babies how I prayed for this day

Sibling Love and Mothers Gulit – 8 Months

About this same time last year, I started to really believe we were going to have two more babies.. 

before all the crazy began…. before I knew what the words Twin to Twin Transfusion syndrome or NICU really meant.. before I knew how it felt like to hold a one pound baby.. before I knew the miracle of fetal surgery.. when I thought our biggest problem was finding the right size car ( it’s not an easy task when you need 4 car seats)

.. never in a million years imagining I would soon be standing next to a plastic box for months praying for your survival ….. before I knew how much my heart would melt when you smile ..before I knew the painfully beautiful journey the was ahead of us ..

I was just beginning to wrap my head around the idea of adding two more babies to our family .. we would basically have 4 kids under 4 years old.

I was so happy and petrified all at the same time. You start to learn this combination of emotions from the highest high to the lowest low all at the same time.

And as I started to picture all 6 of us .. I also started to get a strong dose of the infamous mother’s – guilt. If your a mom I’m sure you have had a helping of this at some point. Mothers- guilt shows itself at the strangest times. You want siblings for your children but you are also afraid of losing that special one on one time with your first baby… So scared of how this change will affect them and how they will adjust.

For me, it was inevitable. I had it when I was pregnant to Juliet, my second baby… focusing and worrying about how it would change Mia’s life. How would I give my first born the attention she “needed?” Mia was was my first, and like all firsts, she was the center of it all .. she was researched and documented ..every movement.. my whole world revolved around her.. how could I possibly give my toddler and a newborn that same attention..  I knew things would change.. and change can always be a little frightening.

My second pregnancy ( like most things in my life) was planned. It was everything I dreamed of ..two healthy babies .. baby girls.. two years apart. My sister and I are 2 years and 15 days apart and my girls are 2 years 6 days.  I wanted to have all my babies before the age of 35 ( pregnancy can become more difficult after that and there is a higher rate of complications and .. guess what else .. TWINS- about 5 % chance – another reason I should play lotto ) .. but two months after Juliet .. I turned 35. My plan came to life. My sister is my very best friend and I just kept reminding myself of that.  Envisioning their relationship … how beautiful it would be for my daughters to have what we share. But mixed in my excitement was still this feeling of guilt…

My hospital experience with my second was so different than my first.  Mia was an easy delivery.. a few pushes and there she was .. right into my arms.. and there she stayed ..for the next 2 years.  My second delivery was an emergency c section.  Juliet turned breech as I started to push and was in danger.  Luckily our doctor was able to get her out safe with a classical c section.  It is a larger incision which gives much more access to the baby and is typically done in emergency circumstances.  I was terrified but Juliet came out perfect.  I felt that same unconditional love pour all over me instantaneously but I was still worried and just wanted to be the best mom to both my girls … a few days later it was time to take her home… 

……and then…

just like all amazing things mommies do….

you just do it.. ( as Linda would say 😉) but my mom is right whenever I ask her, “How do you do what you do”.. she will always answer, “You just do.. you do what you have to do for your kids ..” 💕

you magically divide yourself .. with your stomach stapled together .. still burning and too painful to stand up straight.. you just do it …giving everyone what they need .. breastfeeding and holding a baby with one hand, while coloring a new art project with the other .. and at the time, I was still managing my career..  it’s crazy but you do it all and it’s so incredible!!

I was far from those Instagram super moms that are back in a bikini looking amazing the next day.. It took me a while to get back to myself.. I lived in sweats for a long time and rocked a messy bun way longer than I should have… but my girls were happy… and I was too.

We just started getting our groove .. in a rhythm .. as my sister called it, “Stella Finally Got Her Groove Back”.. I didn’t need a diaper bag.. (the struggles I had packing that bag.. I always would forget something) now I could throw a few diapers in my pocketbook .. leave some in the car .. Maybe take a juice box.. and we were off. I finally lost my baby weight .. skinny jeans were back on .. my body and mind strong.. I was back into my yoga practice .. that whole newborn stage was becoming a memory.. I loved every stage but now my girls are my little besties.. their personalities coming out.. our lunch dates .. manis.. play dates ..just having conversations .. we can hang out and were having so so much fun.  

But suddenly   ….. it happened … surprise you are pregnant.. and then.. even better .. surprise it’s TWINS.  This time around .. it was a whole new ballgame.  There was no plan.. none.. I never pictured our family with any more babies.. ( other then the ones my sister kept having.)  She always wanted a big family.. and as nice as that sounded .. I didn’t think I would ever be able to do it .. everyone at different stages.. it just seemed impossible ( and a little crazy) Mia and Juliet had each other.. I thought we were complete…. but I was so wrong. There was a plan, except this time it wasn’t mine… it was from a power much greater than me.. it was a plan much more beautiful than anything I could have created.

But how would my girls adjust to this? Two new babies on top of a toddler and a 4 year old?? Juliet was still in diapers .. Mia just starting school.. they both love to play .. and are no where even close to independent … infants require nonstop attention.. and the sleepless nights .. then teething .. and to think it’s all doubled! How could this ever work.. what would it do to my girls? 

Mom guilt showed up hard and strong.  

I almost felt sorry for them.. my girls .. all that they would “miss out” on.  A few weeks later .. I started to discover the boys were sick.. and then I became sick.. bedrest.. the traveling back and forth to Florida.. oh it was bad.. I wanted to give the girls so much and I just couldn’t.  The entire summer was spent in the NICU.. and I again had a c section so there was no swimming,  no beach, no pool.. my heart and head constantly torn between enjoying my beautiful girls in whatever moments I could steal and thoughts of my twin boys fighting for their life inside a plastic box.  Luckily my mom, dad and sister stepped in and made sure my daughters didn’t feel any of this .. my husband and I were a true team .. I learned a whole new appreciation for the word family.. but, at least for me, it was so hard to make the Guilt stop.  They didn’t deserve any of it.  They needed me.

As much as I worried about my sons.. I worried about my daughters.  The main thing that kept me sane all those months was over and over again hearing my sister and mother tell me ” I have your girls .. they are happy.. just worry about the boys..” Just writing those words brings back tears. My sister is truly a second mother to my daughters. She was pregnant at the time and had three boys of her own… and still not a day went by when she didn’t ensure my daughters were ok.. and not just ok but happy and having fun.. and feeling very loved. She is my angel. And when I was in the hospital with my sons .. whether it was a “good day” or one of the many bad days.. I knew I could be present for them.  And when I would come home I was able to do the same for my girls… …and like a switch …. you would go back and forth ….trying to live two lives.  

The word Guilt took on a whole new meaning.. as a mother it’s hardcoded into us.. all day long .. for not reading that book one more time after you have already read it 100 times that night …but in little amounts its normal and not always such a bad thing. It can push you to be your best in tiny doses.  But then there is a different kind of guilt .. it is ugly and unfair… it is when you blame yourself for situations that are completely out of your control.  

When you have a preemie in the NICU you could write a book about the things you blame yourself for .. I’m sorry my body wasn’t able to keep you safe longer.. I’m sorry I can’t kiss you goodnight every night.. I’m sorry I have to leave you in a hospital everyday with strangers taking care of you .. I’m sorry I couldn’t do more.. I’m sorry I’m able to walk away and leave you here .. I’m just so so sorry you are suffering …

As much as you may want to ignore or deny it.. I’ve always found it more productive to acknowledge these feelings that start to pop up.. let yourself feel whatever it is.. try to give it a name…. whether it be guilt or fear or sadness .. it doesn’t mean these feelings will be there forever…. but once you recognize it and validate it, you can start the hard part of processing and working through these emotions. If you just try and suppress it, many times, it will just come back with vengeance.  For me, connecting with other mothers who understand is a life saver.  It is even better if you find someone in a situation similar to yours ( please anyone going through this know know you can reach out to me) Unless you have lived through it .. no one knows what it feels like.  

It’s almost a full year now.. from when we were told we were having twins to today.  So much has changed .. but still so much has stayed the same..

I am mommy.. not just a mother but mommy.. the title itself gives you some kind of superpower.  To multitask like no other.. to function on no sleep.. to be a chef, personal assistant, teacher, nurse, housekeeper .. the laundry the grocery shopping.. even down to reminding them when to pee so it goes in the potty and not their pants .. yes we do it all… it is the hardest and most rewarding job I have ever done. The payment… not in dollars…but love … and it is your greatest achievement.

Through this I have learned so much, not only about myself, but also about my children. With all these jobs… one of the things I have learned is that it is not my job to entertain them 24/7. Children need to be loved and taught right and wrong ..and they also need to learn how to entertain themselves. For whatever reason, I believed this was my job.. but I know can see that them learning to entertain themselves is one of the best things I can do. We play .. I love to play ..but I’m no longer feeling the need to organize and orchestrate their fun every minute of the day. I can see that doling our activity after activity .. planning their every move .. it just robs them of their independence… hinders creativity. Think back to your childhood.. how much you used your imagination.. “go play in the backyard” .. and we would.. for hours.. pretending the screws on the shed were magic buttons .. catching fireflies .. playing tag… things were simple and in my opinion better in many ways. Over-parenting.. hovering.. it’s suffocating .. and hinders growth. I’m still involved and having fun but approaching it a little different.

I don’t know how it is even possible but having my boys showed me a new love for my girls.  They are not the little girls I wanted to feel sorry for… they are not being deprived in any way.. it is the exact opposite. 

They are full of so much love for their brothers.  Peter and Maurice adore them.  I have given them double the cuddles, double the hugs, double the love.  It has made them better.. they are more compassionate .. more understanding.. more independent .. more patient.  My girls are kind and giving.  Juliet is so tender a natural healer.. and Mia so intuitive.. she is able to stop their crying in an instant. They help me .. not just with getting diapers and supplies.. but they actually helped me heal.. the guilt I held on to.. the story I created …. like so many stories we create about ourself … it was so wrong

If I only had a glimpse of what our life would be like.. how your sisters love to hold you and rock you to sleep.. how they run for a pacifier the second they hear you cry.. how they love to tickle you and make you laugh… what it feels like to hear all four of you giggle at the same time.. the way their eyes light up when they kiss you each morning and night..

If I only knew then …I would have understood it’s not what I was taking away from you.. it was all that I was giving to you.. the amount of unconditional love you all receive is immeasurable and was just multiplied by two. You now forever have two new best friends who will be by your side like no other … and this is just the beginning .. 

my babies the greatest gift I could ever give you is each other .. your siblings … your very best friends… the ones who will always be there for you no matter what… as my sister has always done for me … forever cherish it 💗💗💙💙as you do now.

Anything Is Possible with Love & Faith

Today I received the most beautiful thoughtful gift from a stranger who became a dear friend during our journey .. her words are so powerful and true..

“For Peter and Maurice

Two Miracles who inspired us to believe that anything is possible with love & faith ❤️”

I will always believe because of you My boys ❤️

Thank you Sarah, and our little girlfriends Nina and Lily xx We will always treasure this and your friendship

Happy New Year

✨Surrender to what is

✨Let go of what was

✨Have FAITH in what will be

Breathe and believe in the powers from above

so many things in this crazy beautiful life are beyond our control

2019 goals

My Surrender experiment ✨

practicing the balance of when to push and when to let go ..

to live fully the life I have been given And surrender the illusions of control ..

Having to give up always trying to understand and accept not knowing .. to find peace in it all ..

Peace resulting from retraining my mind to process life as it is rather than what I think it should be ..

accepting myself as I am .. feeding my soul and not ego and surrounding myself with those who choose the same ✨

Never in my wildest dreams would I have planned this … and yet somehow it all seems so right.. every step led me to you… made us become us ..

“god knew my heart needed you..”

your heart cannot help but change after you witness miracles ❤️

2018 ✌🏻it’s been real

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World Prematurity Day

 

 

 

 

 

 

 

 

 

 

I know today there is a woman who just became a mother.

It is nothing like she had planned.

She is being wheeled out of surgery on a cold hard stretcher passed a small dark box… everything inside her is yearning for her newborn.  To have your baby immediately taken from you after delivery and sent to a team of doctors and nurses, without you even getting a glimpse of them, goes against all the instincts you have.  She uses every ounce of strength to lift her head up just enough to see her sweet child born too soon inside.. but instead, all she can see is a black mask and wires.. so so many wires…  Her newborn baby is lying in an incubator .. fighting so hard for survival.. for each breath.. every heart beat ..  She reaches out to touch him… almost for proof that he is really there.

It is pure happiness but it feels so much like sorrow.  She is filled with gratitude… from the depths of her soul so very thankful her child is alive.. but the fear of losing him is all consuming.  It is not just a fear but a reality .. she will be told again and again.. “survival is not day by day,  but hour to hour… ”   It is the beginning of the roller coaster ride.

She is standing in the same room I stood.. leaning over the same box I watched for 93 days.. begging whoever her God is to keep her baby alive. She will get a course in medicine she never wanted to have.  She will shed more tears than she even knew her body could produce.  She will gain a deeper appreciation for the word family and learn so much about people.  Angels will be there to help and carry her through.  She may have known she was having a preemie and did everything humanly possible to prepare for this moment.. but you never really can.  Days turn into months as her baby grows outside her womb barely alive.

She starts her firsts..  one week birthday means a head ultrasound to rule out brain bleeds.  She waits each of those seven days knowing its coming and there is a chance her child’s brain is hemorrhaging.  The thought is so horrifying she is afraid her touch could hurt him.  Preemie’s neurological systems are not fully developed and they suffer through endless painful procedures each day.  They say these babies start to associate every touch with pain.  His kidneys are failed.. heart maybe not working.  He is only breathing because a machine is doing the work for him.  The endless drone of beeping and alarms is deafening.  The doctors are all “cautiously optimistic,” another fun NICU phrase, that is said often when you hear good news.  There is always that reminder that at any moment it could all change.  The firsts continue to surgeries.. blood transfusions..episodes of apnea or not breathing..  and there that new mother is .. toting her NICU bag .. singing songs.. reading baby books… decorating her isolette, pumping breast milk… praying .. so much praying.. trying to figure out how to be a mother and how to care for this precious fragile baby no bigger than a ruler weighing not much more than a pound.

She is in that room with time standing still.. “hurry up and wait..” but life continues.. she has other children she must care for at home.  She has to leave her baby alone each night and go about her other life with her family.  It takes everything not to break down.  When the day is quiet she usually cries herself to sleep.  She is broken in half.. leaving behind a piece of her heart everyday.

And as she is trying so hard to figure it all out.. minutes turn into hours..hours into days.. days into weeks…you never really figure it out.. it doesn’t get much easier but it becomes your new “normal.”  She stops jumping so high every time an alarm goes off.. she learns the lingo and routine.. the people and machines become familar.. and  You watch this miracle grow… then you begin to grow too.

Your firsts will eventually change.. the first time you feel your baby skin to skin.. the first time you see your babies face without a mask on it… the first time he can regulate his own temperature and sleep without being inside a box.. the first breath of air he can take on his own.. his first day in clothes.. first bottle.. first time you see his body without tubes and wires in it.

And then by the grace of God…her dream will come true.. the first time you can kiss all your babies goodnight and wake up together as a family.. together under one roof… her heart will start to mend.

I wish I could tell her this…

It’s not what you planned but you will be able to find beauty in it one day.. that space the bond you will form with your child will be like no other .. look at your baby .. really look at them… past the tubes and wires.  watch how strong he is … how incredible this miracle is in front of you..  . you will find your strength in him.  Success is not just what you have achieved but it is also what you have overcome.  They don’t give up so either can you.  Find love and support.  You will need to live two separate lives… you will have a NICU life that few really understand and then you will have to continue with “regular” daily life.  To switch back and forth.. to try to ‘have fun”  knowing your child is barely alive is one of the hardest things I have ever had to do.  You will need to be surrounded by genuine love.  There is something about human nature that makes us take so much for granted…  but the minute you think it could be taken away from you everything changes..you will gain a new appreciation of the “little things” in life.  Watching your baby breathe and eat become so very special.   There are very few people who know what it is like to watch their child suffer… day after day after day…  surround yourself with people who can comfort you.. join support groups.. talk to someone who has gone through it.. message them.. email them.. you will be surprised how many angels you will meet along the way if you just open up and look for them. I am so thankful to have had so many.  Most importantly have faith.  Believe your baby or babies will be home with you.  Believe it with your entire soul.  I even did a nursery .. I had to picture them here in my house.  Find something to help you pass the time… and as hard as it is, take pictures and try to keep records.  You may be afraid to look at them now but one day they will deserve to see them.  I started to write.. I am far from a writer but I needed something to help me understand what I was feeling.. to help me remember where we were and how far we have come.. I want Peter and Maurice’s journey to comfort someone in need.. the final stage of healing is using what happens to you to help other people.. that’s healing in itself.

To that mom standing in our old room in the NICU right now… It is not what you planned… it not not because of anything you did… you and your babies don’t deserve this … I am praying for you.  To the mom that did not get to take her baby home.. my heart is with you and your angels are in my prayers.  I am so very deeply sorry.

Today, November 17, on World prematurity day, a day observed to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide, I celebrate my son’s miraculous journey.   I am so incredibly lucky to have been chosen to be their mother.

Where there is hope ..there is faith…    where there is faith miracles happen.

In loving memory of Thomas Peter 💙

#worldprematurityday #tttssurvivor #micropreemie

 

 

 

Happiness

Happiness is just outside my window. Would it crash blowing 80 miles an hour. Or is happiness a little more like knocking On your door and you just let it in…

Happiness feels a lot like sorrow. Let it be you can’t make it come or go. But you are gonenot for good but for now. Gone for now feels a lot like gone for good

Happiness is a firecracker sitting on my headboard. Happiness was never mine to hold. Careful child light the fuse and get away. Cause happiness throws a shower of sparks

Happiness damn near destroys you. Breaks your faith to pieces on the floor. So tell yourself that’s enough for now. Happiness has a violent roar

Happiness is like the old man told me. Look for it but you’ll never find it all. Let it go live your life and leave it. Then one day wake up and she’ll be home

Home, home, home

Happiness by the Fray.. my NICU anthem

The song I held my babies to everyday

Through the endless ups and downs

Through the happy days and the sorrow

Praying they would keep breathing …

Praying their heart would keep beating ..

Praying to get the home.

To the NICU mom .. so so happy for the birth of her new baby and yet so broken at the same time. “Happiness feels a lot like sorrow.. let it be you can’t make it come or go..you are gone for now .. NOT for good but for now..”

Never lose faith. You are not alone. Believe in miracles. They do come true.

Thank you God for choosing me.

My sons born at 28 weeks 5 days

Laser surgery by our angel Dr. Ruben Quintero for TTTS at 27 weeks

Peter James 1170 grams 51 days in the NICU

Maurice Jace 790 grams 93 days in the NICU

We are finally home ❤️

Must Have Twin List

I thought I knew everything I needed to know about having a new baby… Peter and Maurice are my numbers 3 and 4. The best this or that… But it all goes out the window when you have preemie twins. Especially after spending so much time in the NICU. Their needs and wants are very different. I have found some amazing products with the help of friends that have been life savers for me and many other moms!

1. Bottle feeding. We tried every bottle.. and I mean every bottle. The como, the tommee tipe, life factory, joovy, advent , dr Browns .. Maurice would not take any of them. Amazon prime comes in very very handy! I resorted to ordering the same nipples he was using in the NICU. They are from similac and disposable and $1.00 each which can get very expensive.. ( and for some crazy reason only sold through amazon. ) Finally a friend told me about MAM. The nipple is flat.. shaped a little different. It is the only one he is able to use. If your baby is struggling with bottle feeding I strongly recommend trying these! They are also anti colic which is a big plus. My advice is to avoid buying bottles in bulk until you know what your baby will like. Buy a few and then once you know stock up. With prime they are delivered to you within 24 hours so there is no need to stock up until you are sure. In my experience many of the big brands are very similar.. advent .. dr Browns etc are not much different. MAM bottles have a very unique shape.

Buy MAM bottles here

2. Hands free feeding. This is a big one. You have two hands and two babies. It is very challenging to feed them both at the same time. I have tried a few different products and this one is by far my favorite. You can use a different nipple than the one supplied ( we are using a preemie one from life factory). Maurice is not able to use this yet but Peter is a champ.

Buy hands free feeding system here

3. Twin Z pillow. Double boppy. We live in this! I feed the twins using this pillow and also use it for tummy time. The pillow case is super soft and comfy and it comes in very handy

Buy double boppy here

4. Table for Two. This looks incredible but the boys right now are too small to sit up in it correctly. The weigh about 11 and 7 pounds. I think the boppy right now is better until they get a little bigger

Buy Table for Two here

5. Double pack and play. The famous pack and play .. but doubled. The boys would nap in here during the day when they first came home. They no longer will sleep laying flat due to reflux and are usually in the rock and play. I would try to find one with a little basket attached so you can store diapers etc for changes.

Buy double pack and play here

6. The Weego Twin Baby Carrier. Twin carrier that can be used for preemie babies starting at 4lbs. Easy to use. A favorite around twin moms

Buy the Weego here

7. Double halo. I love my halo. Twins should never sleep in the same crib or bassinet together because it can increase the risk of SIDS.  The twin halo has a separation in the middle making it safe for twins.

Buy Halo Twin Sleeper here

8. Owlette: This genius little sock monitors your babies oxygen level and heart rate. There is an app you can log into at any time and see the readings. The base station light s green when all is good and alarms if there is a problem. This has been one of the most important things I have for my boys. Please contact me if you need more information or if you are not able to afford the device as I may be able to help!

Buy owlet here Use code NICUMOM for discount

There are a few more and I will continue to update this post as I find things that help us 🙂

3 months old

My dad used to run marathons.. he would always say, “Never forget it’s 26.2 miles.” That the 0.2 miles at the end are the hardest. The closer the end gets.. the more challenging it is. It’s almost like you can see the finish line right in front of you, but you can never get there. It takes every ounce of strength to get through that point when your body is so fatigued it can barely keep moving.

This is our 0.2. I have nothing left. Yesterday our boys turned 3 months old. I celebrated Peter’s birthday with an evaluation from the Early Intervention Program. The REIC or Regional Early Intervention Collaboration is a program that provides home services, such as physical therapy and speech therapy, to children with delayed milestones up to three years old. Click here for more information Early Intervention.  In other states, such a New York, babies born under 1500 grams automatically qualify ( Peter was 1170 and Maurice 790 grams ) but in New Jersey you have to be evaluated to “qualify.” They look at motor, sensory, cognitive , social and communication skills. They also evaluate your child’s ability to self help. Although Maurice and Peter are 3 months old , their due date was Sept 6 and their adjusted age is that of a newborn. There will likely be delays because of this and early intervention is truly the key. I was almost “happy” I was able to get him in.

You do not need to be referred to this program from your pediatrician. Our amazing physical therapist in the NICU told us about it. You can refer your child yourself by calling 1-888-653-4463 in the state of New Jersey. The evaluation is free and nothing goes on their “record.” You will receive a report that you can submit to your pediatrician if you so choose. The program is also voluntary and you can discontinue services at any time. I cannot stress enough how many studies have shown the benefits of early intervention and how much I recommend it to any parent concerned of their child’s development.

Maurice’s birthday yesterday was yet another month in the hospital. He had his surgery two days ago. The hernia was larger than we had thought and he had to have general anesthesia. It was a very scary time but I’m so happy to say he did incredible. He came out and woke up right away.. he didn’t require any additional respiratory support and was able to eat. Everyone is so proud of him.

Last night Maurice had an MRI of his brain to evaluate what tormented me in utero. Very early in my pregnancy, I was told by Columbia, Maurice likely had a devastating neurological disease. I remember the day like yesterday. After the hour long ultrasound, they brought us into the conference room and said he was missing part of his cerebellum. I begged the doctor to tell me what she thought it was. Her response, without any delay, was Dandy Walker. She suggested I meet with the neurologist so I could learn about how devastating this disease would most likely be. In their report the called the cerebellum “banana shaped” which is also associated with horrendous disease. They recommended termination due to this along with his small size ( he was measuring <1% and Peter >90% ) and abnormal umbilical cord. They told me he would “likely not make it and if something happened to him it would harm Peter. ” As the weeks and visits progressed the reports became more grim.. they said there was a malformation in Peters jaw.. a problem with peters heart .. a dilated aorta.. the list was devastating. They doctor went on to say that most people at this point would ..”scrap the pregnancy and start fresh..” I was not even in my second trimester. I was heartbroken and I couldn’t do it.

I found a maternal fetal medicine specialist .. a doctor who is revolutionary in his field ..our angel Dr. Ruben Quintero. After two separate MRIs on Maurice’s brain (while he was still inside my stomach) it was determined that he had a benign cyst known as a Blakes pouch which would have no effect on his neurological status. We repeated the MRI now that he is bigger to see if the cyst is still there. We just received the results and his brain is normal. This has haunted me for almost a year. To know my son’s brain is normal.. confirmed now once again on an MRI .. is a miracle.

Dr Quintero also educated me on SIUGR (selective intrauterine growth restriction) or having a “small baby.” He said, as long as we stayed in stage one ( good flow in umbilical artery) the likelihood of his demise is very small. He continued to recommend we were monitored closely. Although the boys did have a large discordance in size (ranging from 60-90%) throughout the pregnancy we remained in stage one SIGUR and Peter was not in significant danger.

It was Dr. Quintero who gave us hope. He spoke to me numerous times before I was even his patient. He treated me like a person.. like family. I knew he cared about my babies. He and his colleagues spent countless hours educating me and comforting me. His advice was based on strong medical data and numerous studies. He is a pioneer in his field and the true definition of a physician. I have never met anyone like him.

When I think back to the moment my life changed.. it was not just when we became pregnant. I was told so many times we would lose the boys during our first few weeks at Columbia. This was all based solely on early ultrasounds. The nature of ultrasound is so very subjective. Each technician can do the same test 10 times and come up with a different number. You are looking through skin.. fluid.. amniotic sac .. at a baby the size of a penny. I decided to leave Columbia when my symptoms of TTTS became severe. They no longer brought us in the conference room to discuss the results. When I asked about surgery for TTTS I was told very directly… “we do that surgery to save healthy babies.. and you don’t have healthy babies..” I was 17 weeks pregnant at the time.

That weekend was Palm Sunday and I broke down both mentally and physically. The picture that was painted made sense.. twin pregnancies are at a much higher risk for genetic problems.. Maurice was so so small not even measuring on a growth chart.. their hearts abnormal .. brain issues.. and now even Peter’s face. My advanced maternal age also puts me at higher risk of complications…how could they be wrong about so many things? Was it even necessary to do more tests.. I was sick so very sick from twin to twin transfusion syndrome.. how much more could I put my body through.. my family through .. for “unhealthy babies.”

I belonged to every Facebook support group I could find. I would ask take advice from anyone who had knowledge on the subject. Early on I called Mary Salman the founder of the Twin to Twin Transfusion Syndrome Foundation. She also provided priceless education in regards to the disease and treatment of TTTS. I asked her who she thought would be best to manage my case. She told me she would have to say Dr. Ruben Quintero. She said, “…if there is any problem during surgery or something unexpected.. he will be the one to know how to fix it.” It made sense. He developed the instruments to operate on an anterior placenta ( which I had) and is a pioneer to many other surgical techniques in utero. I was in touch with his office very early in as a “just in case” but at this point didn’t see how he could help us. I just knew I needed to do everything and anything possible to save the boys.

I posted desperately in one of my groups that weekend.. I begged someone to help .. if anyone had any advice. An angel private messaged me with Dr Quinteros cell phone number. I called him.. 10:00 pm Palm Sunday night.. and he answered. He explained facts about SIUGR .. educated me on discrepancies in ultrasound technique ( particularly with the ductus venosis) and said come to Florida. He said ..” I cannot promise you everything will be ok .. but I will do every test needed and statistically speaking you have healthy babies..” It was not false hope. It was a promise to do real medical studies such as a MRI and Echo and base his recommendations on what he finds.

It was that phone call and trip that changed our life. It was that angel of a man who saved my sons. We did end up needed surgery for twin to twin transfusion syndrome. And we did have problems. At 27 weeks my boys were in grave danger. Peter had heart failure from fluid overload. Maurice was in kidney failure and had no fluid left in his sac. I had contractions and was going into labor. The excess fluid expanded my uterus and made my body think I was ready to deliver. The cut off for surgery for TTTS is 26 weeks. I would have been left with no other choice but to deliver my very very sick small babies. But we were prepared. We already had a relationship with Dr. Quintero. They were able to stop some of my contractions with medication and stabilize us just enough to get on the plane to Florida. He agreed to operate. Every day the boys stayed inside helped them survive. It bought us enough time to get steroid shots to help their lungs and magnesium sulfate to help their brain.

He performed the surgery the next morning. Their connecting blood vessels were very large. They were about 5 times the “normal” size. They were not only taking blood and nutrients from one another but they were also dependent on each other for survival. If Dr. Quintero would have performed the traditional surgery where the blood flow between the babies is completely separated .. I would have lost both of my sons. He had to perform a variation of the surgical technique he had originally described. A rare procedure necessary for about 5% of cases known as Supra selective laser surgery. This technique is not yet published or in any literature. It involves balancing the blood flow between the boys rather than separating it. There is no other physician who performs it at this time. There is also no way to know if you need it .. you cannot see the size of the connecting blood vessels until you are having the surgery. For us, Mary’s advice was lifesaving. If we had not gone to Dr Quintero, our boys would not have survived. I pray someone in need one day will remember our story and it can do the same for them.

It is a very humbling experience. To be able to look into the eyes of someone who has saved your children. To know that because of this man’s “job” your babies are still alive. It is the definition of gratitude and love. He is not only a genius Physician, but also becomes a friend to every parent of every child he has treated. I will one day return with my boys so they too can meet the man who has saved their life and thank him. They will always know. When we left the hospital in Florida he said to us, “..take my cell number and call me if you ever need anything .. always.” I know he meant it. We are still in contact today and I am dedicated to helping him raise TTTS awareness and obtain funding to publish his work .. especially the data he has on the procedure he performed on Peter and Maurice.

TTTS is well known to the mothers affected by it. If something can harm your child, you learn.. you learn because your child’s life depends on it. However, there continues to be a need for further education in the medical community. Not all TTTS centers and treating physicians are trained in all surgical techniques. It is a very rare condition. It can happen suddenly. Within this rare condition there are some variations. Ask your doctor about their statistics. How many surgeries have you performed? What is your success rate? What is your success rate with an anterior placenta? Have you ever encountered a situation where the vessels were very large? What is your treatment if a complication arises? The membrane is very fragile. One rare complication during surgery it that it can rupture. There is a procedure that Dr Ruben Quintero has been doing for a number of years know as an amino patch. It can save babies after a ruptured membrane ( membrane rupture could happen after other things as well such as an amniocentesis). It is a relatively easy procedure however not all hospitals or physicians can do this. Some facilities will not even present it to you as an option. Know your doctor. For us, there really was no decision to make. It was not easy to travel back and forth to Florida. It was an expense. I have two other children at home that needed me. But, for so many reasons, Dr Ruben Quintero is my only recommendation for patients who have twin to twin transfusion syndrome and need laser surgery. If you need help or assistance know there are organizations that can help. Contact Mary Salman from the TTTS foundation .. reach out to other mothers. Your child’s life may depend on it.

I’m am sitting in our room waiting for them to return my son. He just left for his circumcision. This is the last procedure we need to do before he can come home. I can barely believe the words as I type them. The tears haven’t stopped today. The happiest of happy tears. My son will be home and family and heart again whole. It is surreal.

This final stretch has been the longest. I do not remember what life was like before the NICU. Having to leave my babies .. juggle them .. watching my children suffer. Watching my sons grow outside my womb. The medicine that gave them life. It has remolded my heart in ways that have forever changed it.

I will never be able to find the words to express my gratitude. To my husband for our children and his support, to my father for coming with me to every ultrasound appointment and then sitting beside me everyday in the NICU while James was at work.. my mom who moved in my home to ensure I would be able to spend as much time at the NICU as I needed .. who made sure my other children were always happy .. My parents are angels.. I pray to be like you for my babies… the most selfless people.. who live and breathe for us.. .. my sister what would I ever do without you.. my best friend and second mother to my girls… I have been blessed.. I will make sure my son’s always know what you did for us… our family and friends .. every call and message …the strangers that I have come to love like family … the practitioners and life saving medicine that gave my boys the ability to survive being born months too soon.. I have never believed more in a higher power and the strength of prayer. I know with all my heart that all the positive thoughts and energy given to them aided in their success.  Thank you for following us in this rollercoaster of a ride.  This is my heart…My attempt to document the pain and beauty… our journey .. our story ..so it may one day help someone else and so that my boys always remember how incredible they truly are.  So they never forget how much they are loved.

But mostly today I am thankful for my sons Peter and Maurice. You have grown my heart larger than I could have ever imagined. You taught me about love and strength. You have taught me what it truly means to be a mother. God knew my heart needed you. My sons this is just the beginning .. the beginning of the beautiful life we will spend together. Counting the seconds until we are all together as one. Your family cannot wait to meet you and shower you with love endless love. As your papa Maurice says .. you will always be held in someone’s arms and never alone again.

 

Please take a moment today to send prayers and blessings to those who have not been so lucky.. to those who have suffered and lost .. espically to my dear friend who lost her son to TTTS and who has been my strength and light throughout our journey.  I love you and will forever admire you.  Thank you.

 

Day 90: Off of feeding tube and oxygen .. Surgery for Maurice

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When you look at something everyday .. eventually you stop “seeing” it. Mia started school last week. Being in a new place with her ..watching her sit at her desk for the very first time .. really reminded me of this. Think about your first day in a new classroom. You take every bit of it in .. each picture on the wall .. the colors the sounds.. you can’t help your eyes from roaming around each and every corner. Your senses are heightened. But as time goes on, the space is just there. It is what it is.. the colors don’t look so bright and sounds ( like the bell signaling you to change classes) no longer sound as loud. The strong smells from the lunch room and gymnasium are barely even noticeable.

You get comfortable. You become less aware. The same thing happens when you sing your favorite song.. or say your prayers .. do you even hear the words anymore .. what they mean .. it becomes a reflex. When our senses are exposed to the same thing over and over again.. even the taste of your favorite food … you start to get desensitized.

This progression is something that happens unconsciously. It is human nature. After months in the NICU, you develop this strange comfort. Each day hardens you a little more than the last. The pain is still there.. for me the pain gets worse .. but the place itself changes. In the beginning it’s just terrifying and overwhelming. You can’t help but memorize each wire.. trace them from your babies body to their corresponding machine. .. the loud vibrations of water through the Cpap machine and the drone of endless beeps .. it is all deafening. Everything smells like hand sanitizer. You are always cold… a chilling cold to your bones. You are “mommy.” At least that’s what everyone calls you. But you don’t feel anything like a mother. You are there to be with your baby. A baby you can barely see or touch. I was wheelchair bound the first few days and could barely stand up long enough to look inside the holes of the isolette. I would reach up and hold their tiny hands as long as I could. I would always try to time it and make sure I spend the same amount with each of my boys when they were in separate rooms. I knew both rooms inside and out.. even how many steps it took to get to them.

But time goes by .. you stop “seeing” it all. Staring at the walls and monitors when you are alone in a room for hours at a time becomes the norm. You no longer feel the same paralyzing fear when you see their translucent skin hanging on their small bony body… The nurses would tell me, when I would ask to hold them, “one day you will be able to just reach in and pick them up yourself. ” It sounded so foreign and impossible.. but sure enough ..days turned into weeks and I was able to do it. I would monotonously detach the tubes, leads and wires.. pick up my baby .. put him on my chest .. and then begin quickly reattaching everything while he was lying on me. I can reach in and change their diapers. I can give them baths. I can pick out their outfits and dress them.

The fear started to fade.. the environment the same ..but my perception evolving.

It has been 90 days. My son Maurice has been in the NICU for an entire season .. summer came and went.. we are still here. The room isn’t as cold. The machines a little less scary and many times I don’t even look at the monitors. The tubes on his face …almost a part of him.. I never saw him without them.

I walked in a few days ago .. as I have literally done a hundred times before ..and peeked at him quickly before rounds. My sweet nurse asked me if I noticed anything different. I didn’t… I had to go back and look again. I stopped “seeing” what was in front of me. My boy .. my strong precious baby boy didn’t have his oxygen in. We were anticipating him going home with it. The doctor decided to give him a trial off “just to see what he does.” He has been on two different medications three times a day and I can see a change in him. Well, he did it! I am not surprised at my Superman! It has been almost 4 days now without any respiratory support. My boy is still breathing fast but he was doing that even with the oxygen on. His doctor explained to me that because of his chronic lung disease he has difficulty getting co2 out and having supplemental oxygen won’t change that. His lungs just need time to grow. There is scar tissue built up that will never go away. We don’t know what the future holds but at this moment .. my strong Maurice is breathing on his own.

About 48 hours after that, his feeding tube was taken out too. He is eating and breathing. When you have a baby .. do you ever think about that baby not being able to eat or breathe ? Forget the torment of not having them with you .. not being able to hold them each night… but to think your baby might not be able to do the basic things needed for survival .. to watch him struggle for months ..how I prayed for you my angel. How proud of you I am .. you are my warrior.

We would have been going home. On Saturday the doctor and I discussed his progress.. and our plan was to go home today. She then got up to examine him. I saw the look on her face and knew it wasn’t good. His hernia is much larger than we thought. He is having surgery tomorrow. The past 72 hours have been filled with so many emotions. To know my baby is now ok.. he is no longer the one pound preemie requiring countless measures for survival. He doesn’t sleep in a temperature controlled box.. he doesn’t need a machine to breathe.. he doesn’t need a tube to eat.. my boy ..his face free of all the apparatus.. you belong with me now. How seeing you here .. leaving you here has become so much more than I can bare.

I stopped “seeing” so many things around me for a while now. I almost can’t remember what it felt like to hold your bony one pound body… how many hands would shake. I’m so sad that I can’t be with you .. I’m so so sad and I almost am not able to celebrate your progress because of it. I’m sorry my love. It will pass.. I’m afraid of surgery. I’m so tired of always being so afraid.

In the midst of this.. my dear talented friend Maegan sent me pictures. Pictures she took on my wedding anniversary July 4. The boys were about 3 weeks old. It was just about the time when I started to get some of that comfort. But this day was also very special because it was the very first time James ever held them. I have taken thousands and thousands of pictures. But there is something about these.. I can feel every emotion looking at them. They are a reminder of where we were and allow me to celebrate a little today. When she sent them she said, I hope there’s some reason why today is meant to be the day I send these to you. It was the day I was told he could come home and then minutes later told we need to have surgery. It was a one of my hardest days. These pictures remind me of what I stopped seeing. When I feel like I can’t do anymore .. it reminds me of how strong I really am. It reminds me of the miracle I have been blessed to live. I’m so grateful for them.. so grateful for my sons.

Please keep Maurice a little closer in your prayers for the next few days .