Thank you lord for sunglasses....

we must follow up with neurologist, eye doctor, cardiologist, and the biggest of all GENETICS... so today was our Eye doctor appointment... it was a very special room, full with special needs children.... I must confess i wasn't ready for this at all... maybe today was the day I realize maybe this is my child's future... After sitting sobbing by myself with my sunglasses on, and my so full of energy facebook upgrades (my only social interaction this days), Lorenzo went thru his checkup and i was relieved he didn't want to see us till he was a year old... I couldn't leave that office fast enough....

neverending appointments...

I'm grateful for my Pediatrician.... I must confess she is amazing, very supportive and it was a very overwhelming visit..Lorenzo does have mild hypotonia... So what is Hypotonia? I'm sick of the term ragged doll, floppy baby, noodle baby... Maybe this is why i don't want to see anyone or anyone to come visit, i'm not sure if i can handle it right now... is enough with my five year old telling me 24 millions time a day, Lorenzo's arms feel like he is death? or my oldest daughter wondering if we will ever go in that disney cruise, if we don't know if Lorenzo will be able to swim or walk...

So what is Hypotonia?

Hypotonia is a state of low muscle tone^[1] (the amount of tension or resistance to movement in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affectmotor nerve control by the brain or muscle strength. Recognizing hypotonia, even in early infancy, is usually relatively straightforward, butdiagnosing the underlying cause can be difficult and often unsuccessful. The long-term effects of hypotonia on a child's development and later life depend primarily on the severity of the muscle weakness and the nature of the cause. Some disorders have a specific treatment but the principal treatment for most hypotonia of idiopathic or neurologic cause is physical therapy and/or occupational therapy to help the person compensate for the neuromuscular disability.

Hypotonia is a condition that can be helped with early intervention...

Happy St. Patrick's Day!

The luck of the Irish.... first day at home... I can finally breath (for a while at least).. four kids at home during spring break, alone, tired, depressed... is a lot to handle....

can it be? we are really going home?

Happy News...we are going home.... sad news... still no answers... Lorenzo is three weeks old... can't believe his first three weeks of life he spend in NICU... such an important time, is it normal i sadly don't even feel like i just had a baby.... :(

so much brain power in one room....

Monday, finally arrived.... this place is a circus so many doctors.... so many questions at once... i'm overwhelmed and tired.... Lorenzo since arriving at children's hospital breathing normal, no IV, No eating tube, eats 100cc, no problem.... nurses asked if i wanted to bring items to keep him alert, bouncer, mobile, etc... i must admit it feels weird to bring those items here to NICU, but I got a little excited to feel normal and do normal things with my baby, like sitting in a bouncer chair... I just want to be home... I miss my life.... this is getting old.... and i feel like i leave this hell, for another arriving home is dealing with all the meltdowns, crying, all the questions, messages, school work... etc. I thank god for family, the great friends and community that helped us thru this.... i can't even remember to eat this days.... so cooking, cleaning, is totally out of the game... and i'm so worry about my kids, is like we are still in this cloud.... just floating away....

so many first missed...

I'm still here.... looking at a "normal" baby the biggest happiest one in the whole darn floor, i'm frustrated and still no answers... Communication here is not good, the place feels cold and nurses seem so harsh.... Belly button fell off a week ago, the stress has caused my milk production to almost be gone, and now his first bath at NICU.... what day is it?

Tests, tests & more tests....

They ran so many tests on my sweet baby that they were a few times I stepped out of the room and fall to the ground in the halls of the hospital, because i couldn't take it anymore... the stress of been spring break and trying to juggle my other kids at home, i felt lost with no direction... and more than anything alone.... I'm very frustrated, all testing keep coming back normal... at this point we had MRI, EEG, ct scan, many blood tests, Echo cardiogram... you named it Lorenzo had it done....

leaving a place i loved and trust for answers...

My heart was broken as the doctors at NICU at Mercy, the hospital i loved and trust, told us they had no answers for us, they didn't know what was causing this high breathing, or the Mild Hypotonia... so we did what we were told to transferred to Children's Hospital, they had the specialist i needed... I'm still holding my breath under water, as my other children are falling apart, everyday i watched my middle child cried to sleep because she didn't understand why her brother wasn't home, my oldest show signs of mild depression and was falling behind in school, and my youngest totally went crazy acting up, the never ending phone calls, and messages.... somehow i needed to give answers to everyone when i had no idea or the doctors knew what is going on with my baby.... and off he went baby lorenzo 2 weeks old at the time, to a brand new hospital... All i remember is sitting in an empty hall, holding my baby's blanket for 3 hours and waiting... waiting... waiting...

Unexpectedly here we are again....

Lorenzo was transferred to NICU after birth due to tachypnea (rapid breathing). This is not uncommon amongst newborns, especially caesarian birthed males, and thankfully Lorenzo did not have any other respiratory complications. (likewise Tristan 4 years ago)

However at the six and eighteen hour marks after birth my son was reported with "seizure-like" episodes. No one is certain if he truly he had a seizure at those times or not...but it certainly opened the doors to many more tests...about this time Lorenzo, in addition to tachypnea and possible seizures, was diagnosed with hypotonia. This was a secondary, "non-acute" (i.e., not life threatening) condition and therefore wasn't dealt with. However it has come to play a huge role in our lives now - and a tremendous concern for our lives to come...will it be still, or have faded away?

Nevertheless Lorenzo's breathing improved. He had no recurrence of seizure episodes, and was eating well. So - after six days he was discharged home (with an alarm monitor to warn the entire neighborhood if his heart and/or respiratory rate dropped dangerously low). Six days old, Lorenzo came home....for six whole hours!

That same night I was awoken by a phone call....it was one of the NICU doctors, telling me something about coming back in; blood culture; tested positive for staph....YOU HAVE TO COME BACK TO THE NICU NOW! What? That woke me up....OK, repeat the story....the day before our discharge Lorenzo had a new blood culture done (to go along with all the other tests performed like CT scan, EEG, MRI, Echocardiagram, blood labs, etc.). This most recent blood culture had just turned positive at the lab for staph bacteria growth - meaning there was a chance that he had a staph infection in his bloodstream. This was a risk because Lorenzo had an umbilical IV while in the NICU. Oh, and if the infection as in his blood - he could be dead in 12 hours! So, this is where my sense of control fell apart, i described as been pulled into a massive wave and not been able to catch my breath...

Granted the doctor admitted that the chance of Lorenzo actually having contracted of staph infection was remote, but she didn't want to take that chance. Turns out, the timing was blessed. Soon after our re-admittance to the NICU, Lorenzo's respiratory rate exploded...tachypnea galore!

This is where our dramatic story went through a horrible boring phase....everyday - watching him breath....respirations would go from 50, to 135, 125, 40, 110, 70, 80, 90, 60...and back to 120. Everyday the same - breathing, breathing (the blood culture turned out to be a false positive due to skin contaminant). As we sat there in the NICU watching our son breathe, our minds began to wander and explore other concerns...hypotonia, and moreso, what is the underlying disease/disorder/cause of his hypotonia (and likewise tachyonea, pectus excavatum, etc.). Something nuerological, metabolic, or genetic?