Thursday, November 17, 2016

Our Prematurity Awareness Story......

I have not written on here in well, years it appears.  Life has been hectic, life has been busy, life has been one thing after the other.  For those who know me (which is prob. most of you since I am not that popular lol) know how crazy things can get.  But I have been feeling a little emotional lately and felt the need to write this.  It is way longer than I anticipated - but I hope it is worth the read!


Today, Nov. 17th is World Prematurity Awareness Day.  What is prematurity awareness day anyway?  A day that we want everyone to think of premature babies being born, the risks involved.  A day we want to celebrate our rockstar premiees are (which they are!) or say cute sayings like ‘strongest in the weight class’ (which is another true thing).   But aside from that, for my family,   prematurity awareness is so much more.  Prematurity has changed our lives, forever.



I want to stress that not every baby who  is born premature – even as early as Billy, ends up where he  ends up.  I also want to stress that not every child that ends up where he is had the same beginning as him.  But I felt it was important to tell some of our story because I get asked so often, 'What diagnosis does Lil Bill have?'  'Why does he have it?' Things like that.  Even from people who know how early he was born.  For us, absolutely everything goes back to prematurity.
  • What does prematurity mean to us?  Well for starters, it means loss.
It means the loss of our first baby boy, Aiden.  He was born at 20 weeks.  He was less than one pound.  When he was born, he had a heartbeat, he was moving.  By the time we held our baby boy, he was gone.  We were bombarded with pastoral care, people coming in to talk about funeral arrangements, wanting to know his name.  We hadn’t even 100% decided on a name.  There was a photographer that came and took professional pictures that we hold close to our heart.  The hospital gave us a memory box, we keep it on a shelf in our bedroom with his picture.  We have a white knitted blanket that stays on our bed.  It was his. I cried my eyes out as I was rolled out of the hospital, clinging the memory box, like it was all I had left.  Billy was walking with me, trying to be strong for me.



We wrote him letters that were buried in his casket with him.  We painted a heart with his name, Aiden Matthew Succarotte on it.  It was a wall decal.  Originally, when we bought it, we thought we were going to paint it and put it above his crib.  We also put it in his casket.  His funeral was one of the saddest experiences I ever had.  I can still picture it, like I am there, staring at a tiny casket.
It is hard to process, that something like that could happen to you.  It is one of those things that you hear about happening to someone that you ‘kind of’ know.  Prematurity means grief, due to loss.
The doctors told me I had an incompetent cervix.  They had a plan in place – they told me it wouldn’t happen again.
  • Prematurity means courage to try again.
Soon after, we got pregnant again.  We were nervous, but excited.  We were trying to trust in the doctors.  But nothing was going right during the pregnancy.
  • Prematurity means bed rest.
I was on bed rest from basically the end of my first trimester until we had our son, at 23 weeks.  In and out of the hospital.  I tried to learn how to knit – I didn’t even have the patience for it when I was on bed rest hehe.  I fell in love with Netflix. 
  • Prematurity means hard boundaries.
When I was 22 weeks and 6 days pregnant – I was in labor.  We all thought I was going to deliver.  A doctor was in the room with us and she said that they couldn’t’ do anything to stop the labor or try to save our baby.  She said that if it was 16 hours later they could do both of those options if we wanted her to.  But they will not intervene before 23 weeks.  16 hours.  Let that sink in.  The line has to be drawn somewhere – I get that.  But 16 hours.
  • Prematurity means hope.
The next day I was still pregnant.  We spoke with a NICU doctor who told us that if we had our baby this week he would have a very high chance of a disability – and that the survival rate for babies born at 23 weeks is about 1 in 4 – so 25%.  He said if we wanted to try to save him, they would do it.  Or we could let him go peacefully.  We had hope.  If there was a 1 in 4 chance he would survive – and he came out trying – how could we not?



We had ‘Lil Bill’ 2 days later at 23 weeks and 1 day.  1 and a half pounds, literally the size of a beanie baby, or a container of salt!

He was born breech in his water sack.  I didn’t have any drugs (not by choice may I ad).  He was only 1 pound and 7 ounces and I did NOT forget the pain.  For those that push out 7-8-9 pound babies – RESPECT! 
When Bill was 4 days old, we got his brain scan results.  He had a grade 4 brain bleed in one side of his brain (that is the biggest bleed).  I remember the neonatologist telling us that he was doing ok on the ventilator so that was a good sign.  But she also told us to bring in our belongings, take pictures, get involved in his care, and make it feel like home – because this might be the only time we have with him.
We still had hope.
  • Prematurity means feeling hopeless somedays.
The NICU we were in had a ‘Wall of Hope.’ In front of it.  It showed premature babies, as babies, and then as older kids, it had their birth weights, etc.  One day we were walking behind parents who were looking at the kids on the wall.  We heard them say ‘Oh look – they were smaller than her and they made it.’  They had hope.
Days later, we watched them say goodbye to their daughter.  Maybe hope is not enough.
  • Prematurity means never knowing what to expect.

We never knew what we were walking into.  When Lil Bill was 2 weeks old, he was very sick.  It was still in touch and go.  He needed heart surgery to close a ductus in his heart.  We found out about the surgery the morning they were doing it.  We signed papers giving them permission, and noted all the risks – one being death.  When they finished prepping him for surgery and it was time to let them do their thing – they asked if we wanted to kiss him goodbye.  That was the first time we ever kissed him.
  • Prematurity means praying for the perfect amount of pee.
After that, he got worse.  He was not urinating, for days.  We thought we were going to lose him.  I remember praying for pee.  I prayed so hard.  All I could do was cry when I looked at him.  He looked so bad. 


Finally, he started peeing.  We were so happy! We were then told – he was peeing too much – which was a problem.  We needed the perfect amount of pee. 
  • Prematurity means patience
Bill was in the NICU for almost 150 days.  We couldn’t hold him until he was at least over one month old.  The first time Billy held him – Lil Bill stopped breathing.  Our area swarmed with nurses.  Talk about traumatic! The next attempt - it– took 5 nurses to make it happen. 





  • Prematurity means chronic lung disease.
Bill was on the ventilator for 12 weeks.  He was on several different kinds of vents.  One pumped about 400 shallow breaths into him in one minute to minimize lung damage.  Can you imagine?  

Billy also had a big bleb in his lung, which basically is a big pocket of air.  It collapsed his lung and put pressure on his heart.  Two of the doctors stuck a chest tube in to drain it.  It worked!  Before they did it, I don’t think I fully understood how rare it is that this procedure works.  A nurse talked with me more about it right after.  
The damage was already done.  Billy still his chronic lung disease.  Which means frequent pneumonias, which means any cold can turn into something serious quick, Which is why I don’t play around in the winter months.
In the NICU as we were getting discharged (it was the end of January which is the worst time of the year for us – flu season!) they told me to not take him out until the end of flu/rsv season because one bad cold could have him back on a ventilator in the hospital.  I kept him home all winter – with the exception of doctor appointments.  If you came into our house – you were sanitizing and washing your hands before coming close to us.
The first time Billy got seriously sick with pneumonia was that June.  Way out of flu season.  I felt like it happened just as I let my guard down.  His pulmonogloist re assured me I couldn’t keep him in a bubble.
Since then, I lost count of the number of times Billy has had pneumonia. 
  • Prematurity means brain damage. 
As I mentioned, Billy had a grade 4 brain bleed when he was born.  Brain bleeds are common with premature babies – their brains cannot handle being born so early.  That – with the frequent desaturations with his oxygen (there was a time Billy’s number oxygen stats were at a steady 70 – for weeks – they changed his alarm settings because of it. Your oxygen stats are supposed to be 100).  The lack of oxygen going to his brain caused brain damage as well.



For us, brain damage means spastic quadriplegic cerebral palsy.  This means that all 4 limbs are affected.  Billy’s tones fluctuates – but for the most part his arms and legs are very spastic, tight, and his trunk is very floppy.  His tone causes Billy discomfort – and pain, and muscle spasms sometimes.    Billy is 4 and still working hard to build trunk strength to hold his head and neck up.
  • Prematurity means tracheamalcia.
This is basically a floppy airway.  This is another reason why when Billy gets a cold – he gets really sick.  This also causes him to have sleep apnea – requiring him to wear a cpap every night to sleep. 
When his tracheamalcia is acting up – we have seen him start nonstop coughing fits.  Literally – non stop.  The only thing that can possibly help at those times is his c-pap and oral steroids. 
This is related to muscle tone.  We were told if Billy’s trunk control gets better, this should get better.  We are working towards that.
  • Prematurity means GI issues and feeding difficulties.
Billy has severe reflux.  He had to get a nissen surgery (when they tie some of your stomach around your esophagus) to prevent re flux from coming up. 
Billy also struggles with regular constipation.  He has prescriptions medicine to help with this.
Billy also aspirates on liquids.  He eats only a pureed diet.  He does not always eat enough to get what he needs to continue to grow.  Due to both of those reasons, he has a gubte (feeding tube placed through stomach).



Again, this is mostly related to muscle tone.
  • Prematurity means auditory neuropathy and hearing loss.
Billy has auditory neuropathy, which is basically like a staticky raido. You can hear some of what is coming through – but not everything.  He also has severe hearing loss.  Billy has cochlear implants – he loves wearing them! They have changed his life. 


  • Prematurity means cortical vision impairment and vision loss.
Billy has cortical vision impairment (CVI) which is an issue with processing – what his eyes send to his brain.  He also is nearsighted and has vision field loss (he can’t see downward).
  • Prematurity means seizure activity.
While we don’t have an official seizure diagnosis – that isn’t for a lack for trying to get one.  The first time Billy had a seizure, he was 2 years old and we found him in his bed seizing.  He was twitching and completely unresponsive. 
Since then we have had concerns over certain episodes of him being unresponsive or his body tightening up.  On one occasion his medical day program had to call an ambulance because they thought he was going in and out of seizures for 45 minutes. 
We have had multiple EEGS, in the hospital and at home ones, video EEGS, and regular EEGS.  Billy did not have any seizures during any of the studies.  This does not mean he is not having them. 
  • Prematurity means medical equipment.
When Billy was first born, so early – the statistics for a disability are extremely high.  And then when his brain bleed was confirmed it brought much more  uncertainty about Billy’s future.  When Billy was still brand new (prob still under one month), one of the doctors told us some kids with Billy’s beginning who do live, don’t ever come home – they end up in institutions. 
We live in a world where that doesn’t have to happen.  Thank GOD! We have so much medical equipment at home.  My husband and I often joke that we run a mini hospital at home.  We have an oxygen concentrator, a c-pap machine, a cough assist machine, a suction machine, a chest vest treatment machine, a nebulizer, a ‘bag’ (what they use in the hospital to get you to breathe again), a feeding tube pump, and a pulse ox machine.  We also have a stander, 2 gait trainers, 2 adapted chairs that support Billy enough.  This equipment is always at our house, or our car, or where ever we go....



Once a month we get deliveries of feeding bags, gtube extensions, syringes of all sizes (60 mls, 30 mls, 15 mls), gauze, farrel bags, suction supplies (canisters, tubing, nasal aspirators, etc.), pulse ox probes, nasal cannulas, so much tubing – tubing for the oxygen concentrator, tubing for the c pap, tubing for the nebulizers, masks – for the c pap and nebulizer,
We even have a home health nurse every night.
And I hear pulse ox alarms, all the time, in the shower, in my sleep, in my car, when I am not around Billy.  It is like that annoying beep is stuck in my brain. 
Yes, I know, not quite a mini hospital – but close!
  • Prematurity means therapies.
Billy has been in therapy since before he left the NICU.  He had already started PT and OT in there.
Delaware has a program call ‘Early Intervention-Child Watch’ and they ensure you get in all of the appropriate therapies.  When I stayed home with Billy – we had therapists come to our house for Billy’s therapies – physical therapy, occupational therapy and speech therapy. 
When Billy started at Nurses n Kids, his medical day program – his therapies started there.  He had all of the same therapies – plus feeding therapy.
When Billy was 2 years old he got the cochlear implants.  When he got them, we committed to taking him to the hospital twice a week for therapy with a speech therapist to help him learn to listen.  We were told it would be twice a week for one year. 
He is four – and we still go to the hospital at least once a week – sometimes twice a week for therapies.  We did transition from to physical therapy there last year. 
We thought the extra PT would help build trunk control or Billy.
Billy also gets PT, OT, and speech at school several times a week.

A teacher from the deaf/bling program comes out to see him at school once a week.



He also does hippo therapy with an OT.  Hippotherapy involves Billy riding a pony.
While any of Billy’s therapists can tell you he tries so hard in therapy and usually happily, we really do love the hippotherapy.  While it is therapy,  I think he sees it as more of a fun activity.
  • Prematurity means meeting amazing people, you never thought you would know.
We have met so many amazing people since our journey with Billy started.  It started in the NICU with the nurses and doctors, some of them have hearts of gold. We couldn’t have been in a better NICU, some of them there held our hands the entire time.  Laughed and cried with us, and went above and beyond with Billy's care.  The March of Dimes had a great presence in our NICU and them and the people that they brought in were wonderful.


And Billy’s therapists, it is funny, some of them start feeling like family after a while.  They have truly touched our hearts, whether it was working with Billy for hours upon hours to help him ‘walk’ so we could surprise his dad at our Wedding, or visiting Billy in the hospital after surgery and cradling him to comfort him, advocating for him, learning new things for him, going out of their way for him.  They push him, challenge him, and celebrate with him.
Nurses, from the NICU, from our children’s hospital, from Billy’s medical day program, from our home health agency.  We have been blessed to have several amazing nurses in our life who love Billy and go out of their way to make him happy, who fight for him.  Just ask us about Billy’s girlfriend!
Doctors – I have had many phone calls from Billy’s doctors late at night.  We hate being the ones that they think about after hours, but so grateful for the care they put into Billy’s health.  I have had doctors offer me tissues and comfort in appointments, who have had hard conversations with us, that were needed.  One doctor called me back when he was on a family vacation.  One doctor and I almost cried together when we looked back on Billy’s progress. 
Billy’s teachers are some of the kindest people I know.  His school teachers and his teacher from the Deaf/Blind program.  We are so blessed with so many people who put time, effort, and thought into helping Billy achieve all he wants outa life!
The most amazing, some of the families we have met on our journey.  Whether it was through being at the NICU, the hospital, the deaf/blind program functions we go to , school, or Billy’s medical day program, we have learned about so many different diagnosis’, so many different ideas, so many different outcomes.  We have been so inspired by other families, to not only continue giving every day our best – but to continue living life in every aspect that we can, and to still smile and laugh at our lives!  We learn so much from others, get so much support from other.  We have so many pieces of hand me down equipment that other children we know have grown out of, adapted bikes, chairs, etc.  I look forward to passing everything along to families of other children who need them like we needed them.  We all need each other, and without that support and understanding, I don't know what I would do.
  • Prematurity means never taking life for granted.
Billy has taught me so much about life, he loves life, so much.  There is so much he cannot do.   But he has truly made me redefine my definition of qualify of life. I was always so nervous about his quality of life.  I remember fighting to keep allowing him to eat by mouth or drink liquids by mouth – for qualify of life.  Billy loves eating – but taking away liquids has not changed his qualify of life at all.  
He tries so hard – for everything he does.  If he can’t do something, which is often, he does get upset.  But briefly.  He gives himself a minute and then tries again.  He wants to do what others do – he wants to try to get there.


He embraces every emotion.  If you have seen Billy’s ‘sad lip’ you know what I mean.  And his smile, he smiles with his entire body!! And if you have seen a big smile from Billy, you know what I mean. 
And when he laughs, he laughs so hard – he stops breathing sometimes.  When I walk through the door at night, he laughs, so hard, and twists and turns back and forth and his face turns different colors.  No one has ever been that happy to see me.  I literally take his breathe away.
We never know what will happen tomorrow.  Life is like always waiting for the other shoe to drop.  So we do what we can, every day, and try new experiences, every chance we can.
  • Prematurity means miracles.
We know how truly blessed we are.  After losing Aiden and after being so close to losing Bill, we know we were blessed with a miracle.  Some days are hard, and I do feel what I would call grief.  Grief of the life I thought we would have.  Grief for Billy, grief for me.  But we move forward from it. 
Lil Bill is one of the happiest people I know.  He is the bravest, strongest, most courageous person I know.  He is full of wonder and loves his friends! I have seen him smile through pneumonia illnesses.  Even last night, he was retching and choking for 5-10 minutes.  When he was done and cleared his throat, then looked at us and smiled.  Like ‘what’s next, let’s do something fun!’
 After all he has been through, all that he continues to still go through – he wakes up every day with a smile, gets ‘ants and his pants’ when he sees the school bus, frowns when he leaves his friends at school.  As long as he wants to, we will find a way for him to do anything he wants.



And we celebrate everything.  Small things, big things, everything.  I was really emotional last school year at the end of the year, he got multiple awards.  I cried when I left the ceremony.  It felt like such a huge deal.  Moments come so often like that.  They feel like such a big deal because I truly know how close we were to not having them at all, everything is a miracle. 
  • Prematurity means a new perspective.
When Billy was in the NICU, I want to a therapist there a couple times.  We were talking about raising a child with special needs and she told me that I wouldn’t miss out on anything.  She said the same feeling that a parent gets when their child scores a goal in a soccer game, is the same feeling that I will get when Billy learns to feed himself.  I do believe that to be 100% true.  I could not be more proud of anything Billy accomplishes. 
Our story is still unfolding.  For the first time since Billy was born, I feel as though things are stabling out for him.  His ‘baseline’ is still not like yours or mine would be, and I don’t think it will ever be, but he is significantly better than even last year.  We don’t know what happen with some of his chronic conditions, our biggest worries right now are his lung/airway diseases and his tone and muscle spasms. 


I do wish I would have known then what I knew now.  I remember just wanting Billy to live so bad, disabled or not, medical issues or not, I just wanted him to live.  Although, being perfectly honest, I think 4 years ago when Billy was in the NICU, if I knew what our life would look like now – it probably would have scared the shit out of me.  But deep down, I believe I would have felt relieved.  But I couldn’t’ possibly have known how blessed I would feel.
Before prematurity, would I have lived a life of celebrating everything my child does? Believing everything is a miracle?  Would I feel like I do now about Bill and about life?  I don’t know.  I really don’t.  Experiences transform us as people, all of you, no matter what the experience is.
If I hadn’t prepared myself multiple times to say goodbye to Bill, if I hadn’t heard doctors tell me they didn’t think he was going to make it, if I didn’t watch him fight for his life, so beautifully for several months, if I didn’t watch my husband perform CPR on him in our home, and if I still didn’t spend time doing his medical care, our watch him countless hours in therapy – would I feel the way I do? Would I believe everything I see his a miracle unfolding?  Would I get a frantic phone call from my husband so excited because Billy bared weight on his legs? Would my husband and I laugh and tell Bill ‘great job for using your arms’ when he knocks over a salt shaker at a restaurant?  Would I be estastic when Billy said ‘you hurt me’ to me, because of him actually speaking! Would I feel blessed for every minute my child is hear with us?  Would my husband and I make such an amazing team in life? Would we be able to joke around in the midst of the medical crisis?  Last night, after Billy was done choking, all 3 of us just laughed together and made funny noises and made jokes about Billy's suctioner and farrell bags.



Prematurity has blessed us.  With the perception of having a glass half full – all the time.