Rocco's Birth Story and ONE YEAR OLD update

HAPPY 1st BIRTHDAY ROCCO!!!

Unbelievable that Rocco's 1st Birthday is already here, just unreal. I am the most ecstatic and proud mama ever.  I know he may not understand what is happening or remember this day but I am just over the moon happy to be here! Rocco is ONE. ONE. ONE. ONE. It bears repeating. I am now the proud "owner" of a ONE year old boy. ;)


I've decided to finally sit down and write my thoughts and feelings of Rocco's birth. Something I have been putting off, dreading to rehash, thoughts only that lived in my head before now. I'm not a great writer or speaker and I have terrible grammar. It all sounds so much better in my head but it's time to release it. These are my raw emotions that I have held on to for a year. Nonetheless here it goes. It's long.. 

April 30, 2013
Kent General Hospital
On the night Rocco was born, 11:02 p.m. to be exact, a rush of emotions overcame me after giving birth.  Those congratulatory, promised, happy moments after giving birth were never present in my own mind that evening.  I only felt absolute fear and shock for I knew something was not quite "right" with my little baby. As he lay there in my arms, I kissed him, I studied him, I only grew more and more anxious and afraid of my thoughts. I wanted to feel those heart gushing love filled moments but instead I felt sadness and fear. I had never seen feet, fingers, arms, and legs as long as his for a newborn baby. My OB-GYN even commented on having never seen feet as large as his before. I remember asking the nurses after they took him from me to wipe him down and take his measurements, "Is he ok?"  I looked at Joel, with the same question in my eyes. My question to the nurses was shrugged to the side as again he was placed in my arms but this time wrapped tightly in a swaddle. My mother however did answer me, "yes he is just fine, he's just going to have big feet." Then he was passed around the room to all of his awaiting relatives to take photos with and be gushed upon with hugs and kisses. I was lying there in bed shivering with fear, my mind racing, questioning my thoughts of pure vanity.  I was so vain in those first moments. Where was my baby with cute little feet and toes, chubby little fingers, stumpy, wrinkled arms and legs? The baby my mind had created.  He's going to be too tall to fit that dream baby. Where was he? Overcome with sadness, I was mourning the loss of a perfect baby my mind had created. Those first few precious moments of my son's life feel so tainted with my own vain, sad thoughts.  

For reasons due to my temperature rising during the birthing process, Rocco was taken to the NICU at Kent General about 30 minutes after his birth to be monitored for 48 hours. I was settled into a room one floor above the NICU for the night. I was called to come to the NICU a few times throughout the early morning hours to feed Rocco, as I chose to nurse him. Those first few alone moments in the NICU, just me and Rocco, were very similar to those in the birthing room just the night before.  The fear. The sadness. The WHAT am I going to do when he is picked on at school for his hands? I sat by myself with my new baby, I looked over every inch of him.  I just couldn't understand what or why this was happening. I was happy to have him in my arms but still mourning at the same time. About 7 hours after giving birth,  my mother arrives and visits us in the NICU, the neonatologist on duty approached us as I was feeding Rocco. He said that he detected a heart murmur when listening to Rocco's heart. He mentioned me questioning the nurses the evening before if something was wrong with Rocco. The doctor then said he believed Rocco may have Neonatal Marfan Syndrome based on the appearance of his feet, hands, arms, and legs and those features coupled with the heart murmur made his tentative diagnosis a high possibility. My fears were starting to be realized.  The doctor told me that they were going to immediately transfer Rocco to Christiana Hospital for further testing and monitoring.
I walked back to my room, spoke with Joel about the doctors concerns, and then spoke to my nurse about being discharged immediately so we could follow Rocco. Medical transport picked Rocco up and whisked him away to Christiana Hospital. We were still franticly trying to get discharged. My heart felt like it was in my throat, I just couldn't swallow what was happening.  We were finally discharged and we left for Christiana. I've never seen Joel drive as fast and steady as he did on this day. We arrived at the hospital just as Rocco was about to be taken for his echocardiogram. The rest of the day and night is still all a blur, doctors in and out, poking and prodding but no definitive answers of what exactly was happening with my son. 

The second day was more of the same, still no results from the echocardiogram. At this point they were positive that they believed he had Marfan Syndrome but that blood tests would need to be sent off to Mayo Clinic for definitive results. 

By the third day, we were starting to get agitated awaiting the echocardiograms results. I did not want to leave the NICU for fear of missing the cardiologist. The nurses would practically beg me to leave to get food and promised they would call if cardiologist was there.  Up to this point we were just told they were able to detect a heart murmur.  Ok, no big deal.  My mom has a heart murmur.  Finally, the moment arrived, the cardiologist was here.  We were just placing Rocco back in his bed after a feeding and diaper change, I looked at the cardiologist with a smile as he approached our area of the NICU. I remember at this point, I was starting to feel confident in what the cardiologist was going to tell us, I was feeling confident in my love for my baby boy, I was feeling confident in my motherly instincts of how to provide for my baby. I was feeling those heart gushing love filled moments I so had wanted to feel on the day of his birth. But as my giant confident smile met his cold, stern, unsure face, my heart sunk. He sat us down and started drawing a heart. I started to get anxious. He drew how the blood passes through the arteries of the heart. Then he started drawing another heart, this time he drew it a little differently, same direction of blood flow, but showed us where Rocco's heart arteries were dilated. He showed that a normal heart has a tricuspid aortic valve, Rocco's aortic valve is only bicuspid.  And that his valve was also thick and floppy.  The doctor mentioned that with Marfan Syndrome the dilation would only continue until the aorta burst. He was throwing very large terms at us, that neither one of us had ever heard or would ever want to hear or understand. He mentioned placing Rocco on a medicine beginning that evening that was shown in mice studies to slow the growth of the aortic root. And then he apologized to us saying "I know this is the news you didn't want to hear." I questioned him back with whether or not he has had any other babies born with dilation as Rocco had. He replied yes, that he did have one other baby that was born with Neonatal Marfan Syndrome related dilation as moderate as Rocco. I then asked him how this baby was doing, he slowly shook his head from left to right and said he only lived 6 months. And just like that the room went dark, the floor beneath me disappeared. Everything he said after this point, I can not remember. I was shaking. I left the NICU, I walked the long halls, rode the elevator down, walked into the parking lot, climbed into the car, and just lost it. I screamed. Joel and I sat hugging and crying. I called my mother, screamed my heart out to her. How can this be? Why him? What did I/he do wrong? 
It was the longest night of my life. I sat crying and holding Rocco in the NICU, I couldn't sleep. I was devastated. How can I grow close to my baby boy, knowing he may only live 6 months or so? But when I looked into Rocco's eyes as he lay in my arms looking back at me with those beautiful big brown eyes almost begging me to believe in him, to give him a chance at life. I was already in love with him and there was no turning back. I would crawl to the end of the world blindfolded to find answers.  

At first, I only allowed myself to take baby steps at accepting his diagnosis before I started running full speed. I couldn't quite look up Neonatal Marfan Syndrome (a term not even used any longer by Marfan specialists) - I remember looking it up on the internet to only find one horrible report after another.  I would stop for the day when I became overcome with fear.  Next day I would look it up again and read another report, when I read something unfavorable I would close it again.  I even remember at some point, the neonatologist, sent a photographer around to us while in the NICU, to ask our permission to take photographs of Rocco's features for medical study. I was hesitant to say yes but I did. I remember playing through my mind that by saying yes, was I accepting his demise, was I writing Rocco off to medical study? Would he be just another statistic in a medical journal or like one of the aforementioned reports I found while researching Neonatal Marfan Syndrome?

A week after his birth we were finally released from the hospital to go home.  Happy to be released but we were two very scared parents unsure of what the future holds for our brand new baby boy.  So, we just go home, what if he cries too much or too loud could his aorta rupture? How will we know if he is in pain? What's next for us, for him? I felt like we were being sent home with a ticking time bomb. A very adorable bomb of stink and spit up. 

Looking back at birth photos is still very raw and emotional for me because it opens the flood gates of emotions from that period of time. Writing this brought it all back, even the tears and butterflies in my stomach. It may never go away.  But what I do wish is that I could go back to those two very scared parents and tell them that its all going to be ok. To let go of the fear, pain, anger, resentment, angst, and sadness. Instead just fill in those gaps with love and happiness for your newborn baby boy. For he now brings you so much of both, love and happiness.  Waking up to his smile, kisses, and baby gibberish every morning makes my heart flutter with promise and hope. Yes, the future is still a mystery, his aorta is still dilating, but I feel more confident in where we are headed. I feel more confident in his doctors and modern medicine. We have been given a chance to see he can and WILL outlive his parents. For Rocco now has the chance to write the medical books himself, he is his own trailblazer. He can teach doctors that not all Neonatal Marfan Syndrome babies don't live to see their first birthday and maybe they should stop telling scared parents that. Because this baby sure did!!!!!!!!!!!!!!!!!!!!!!!! My baby boy is ONE! He is amazing in every way. 


Now on to his usual happy monthly post update and photos because I'm sure that's why you are all here to begin with. The photos!!

About me...

approx 22lbs
33"

8 teeth (4 bottom, 4 top) - I have one gorgeous smile!

ORNERY. Plain. and. simple. 

Says "hi" "hey" "baby" "bye" "dog" "oh"

Waves and says "Hi" and "Bye"

Shakes his head and says "No"

Loves...

Watching cars, trucks, busses, etc 

Going outside with his Mom Mom to walk close to the highway 
so he can do the one-arm motion for the trucks to honk their horns

Baths/Splashing in water

Dancing to songs

Sneaking and eating dog food

  

 Rice, noodles, pasta, mac and cheese, bread, eggs, crackers, whole fruits, 
veggies, beans, and tofu all day long for this boy. 

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For Rocco's First Birthday Party (upcoming on Saturday, May 3rd), we decided to go for a Royal theme and make Rocco a King for the Day!  
So on Monday, we had an impromptu King Birthday Photo sesh. 
I don't know about you but whichever Kingdom this little King is ruling over, I'm moving to ASAP. 

and then it was....

Cake Smash time!! 

"oooh...it's too sweet Mom!" face 

This mama is the most blessed and thankful mama in all the lands! I am so very proud to be his mom.  There is nothing like the love you feel for your own child. Marfan or no Marfan, happy he is mine!

Love you baby boy!

xoxo - Christy