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❤️
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
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
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…
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.
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
✨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
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
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