Friday, January 28, 2011

"Hearing" Celebrations!

Yesterday Kevin, Jake and I, celebrated Jake's 1 Year Hearing Birthday with his left ear!  Yes people, we celebrate "hearing" birthdays in our household.  Sounds funny, but to us, it has a been a sort of birth for Jake.  Jake has been hearing over two years already with his right ear.....and its crazy that now its been a whole year since activation with his left ear!  Gosh this year has just flown by.  I look back to his speech a year ago and although he had words, they were not very clear and he really didn't have significant sentences.  Now, he's a little chatterbox and its hard to imagine him not talking.  He even enjoyed singing "Happy Birthday" to his left ear....such a lil nuthead! 

Sunday, January 23, 2011

Signs, Signs, Everywhere Signs....

Anyone who knows me well, knows that I am a big believer in "signs" (from above).  When Austin was first diagnosed, I asked God for a "sign" that things would be ok.  And while I do believe that I did get a sign, I have continued to ask for signs since then.  Well a few weeks ago, someone praying for us through a church prayer chain, reached out to us through another person, telling us that she had a strong feeling that we needed to attend a mass service at St. Cecilia's Church in Rockaway, NJ regarding Saint Gianna Beretta Molla.  This person relayed to us that this church was going to have St. Gianna's relics at the church on January 22nd and that St. Gianna was the Saint of "problem pregnancies" and human life.

So, of course I went on the internet and researched her and found a website dedicated to her life and good work (  The site talked about this woman, alive from 1922 through 1962, who was diagnosed with a uterine problem with her last pregnancy and basically told to terminate her pregnancy or anticpate that she would not survive. Well Gianna continued her pregnancy and consequently died seven days later.  Her child survived and went on to live a long and substantial life.

I talked with Kevin about this and he and I quickly agreed that we would be going to this mass.  My mother also agreed to join us.  So, yesterday at 6:30am, we left the house to travel the one hour plus drive to get to the church.  We sat in the church and listened to the priest talk about love, marriage and the sanctity of life.  Displayed in the church were pictures and such of St. Gianna.  After the mass, one of the members of the St. Gianna society got up to speak about Gianna and her life story.  He then continued to tell a few stories about miracles that have come from people touching the relics and believing in her healing powers.  As we sat there and listened to the stories, I found myself getting extremely emotional.  One story was about a four year old girl who spent 15-20 days of every month in the hospital due a debilitating medical diagnosis.  This child went to a mass service with her mother regarding St. Gianna.  After the service, they went up to the front of the pews and touched St. Gianna's gloves.  The four year old grabbed the glove and instantly dropped it.  The mother, mortified, apologized to the society and asked her daughter why she dropped it.  The daughter replied "it is very hot".  The mother picked up the glove and felt that it was cool to the touch.  They left the church and over the next few weeks, the mother realized that the daughter was not getting sick.  The mother hung St. Gianna's card up on the refrigerator and one day the daughter pointed to the card and said "Thats the one who made me all better".  The daughter is now living a healthy and happy life.

We listened to more miraculous stories about St. Gianna's healings.  At the end of the service, everyone was allowed to go up and touch her gloves.   Kevin, my mom, Jake and I, all headed up the isle.  As we neared, Kevin and I both had tears in our eyes.  We got up to the table, touched her gloves as a family (even touched the gloves to Austin) and then went around to collect our belongings.  They were showing a short film afterwards, which we had decided we were not going to stay for, so we went back to the pew to get our coats on.  We all grabbed our belongings and began to walk outside into the back lobby of the church.  We were the last perisherners out of the church.  I stopped to zip Jake's jacket up and realized that I couldn't find his hat.  I knew that he had his hat on walking into the church as it was freezing.  I quickly and frantically checked his coat, my bag....the hat was no where to be found.  Kevin agreed to go back into the church and look on the pew for it.  He left for a few more minutes while I continued to search for the hat.  I couldn't find it.  Kevin returned saying "I can't find the hat.....and.....They want to pray with us".  I began to cry instantly. 

We all went back into the church to find the priest and a few members of the society inside the church waiting for us.  The priest asked me when Austin was due and asked me if it would be ok if we all prayed.  I agreed and we stood in a circle while he prayed for us, our family, Austin and the power of the Lord.  After the prayer, one society member gave me St. Gianna's glove, and talked to me for a few minutes about believing in her powers and strength.  Everyone told me that it would be ok.   We talked for several more minutes about our life, our struggles, Jake's triumphs and the power of miracles.  The society indicated that they would pray for us and that we just needed to believe.  We all walked out of the church feeling very emotional, happy, and confident. 

We got in the car and I checked one more time for Jake's was nowhere.  Kevin explained that he went back into the church and went through all of the pews, even looking underneath the hat.  One of the society members approached him and asked if everything was ok with Jake.  Kevin explained that Jake was ok, but that we were having complications with our unborn.  This member then asked Kevin if they could pray with us, and hence Kevin came out and got us. 

On our drive back, we all talked about how it was very odd that the hat was gone.  Just disappeared.  And since we were the last ones out of the church, no one could have taken it.  We talked about how if we had not lost the hat, Kevin would have never went back in, and we would have never had everyone focus on us and pray for us.  It just blows my mind how something so trivial can mean so much.  And how, the hat literally disappeared.....with no explanation.

To top off the day, Jake stayed at my mom's house for a little while and Kevin and I ran to the mall for some brief shopping.  We pulled into the mall and I had to use the bathroom.  I was washing my hands and noticed that the lady next to me was staring at me.  You know how you can just tell when someone is looking at you?  I paid her no mind while I continued to wash my hands.  Then, as I passed her to get a paper towel, her and I made eye contact and she just smiled at me like no one had ever smiled before.  It was almost as though we knew each other...but I had never seen her before in my life.  I walked out of the bathroom, down the long hallway and met up with Kevin, as she was coming out of the bathroom.  I whispered to Kevin to "Check out this lady behind me".  As we walked down the hallway, I began to tell Kevin the story and asked him if he knew her.  He turned around again and she was GONE!  We had passed a corner and she disappeared.  And there was no where else for her to go.   WHAT?  Where did she go??  How could she have disappeared like that??  I know that some of you skeptics could come up with an explanation, but Kevin and I took her as another sign.  As if an angel coming down to say "Its going to be ok". 

At any rate, our day was pretty phenomenal yesterday.  A day filled with hope and "signs" and the belief in miracles.  I can't help but have the feeling that everything is going to be ok, some way or another.

Saturday, January 15, 2011

25 weeks

So we went for my 25 week ultrasound yesterday.  After the rough week we had been having (between our consult with the neurosurgeon and my OB appointment where I was basically handed a pamphlet on post pardum depression and told "You'll probably need this"), Kevin and I were NOT looking forward to this appointment at all.  But we prepared ourselves for more bad news and for more negativity.

To our surprise, we actually rather enjoyed our appointment.  Before we began, I explained to the technician that because they found the fluid at my 20 week appointment, I didn't really get to "enjoy" my ultrasound and I wasn't given any pictures.  I asked that she just check everything again to make sure that all looked well, and asked that she take some pictures for us.  She agreed and even agreed to print out the pictures we didn't get from the 20 week visit.

The tech quickly went through all of the major organs, legs, feet, arms, hands, etc.  Everything looks good she said.  I asked if the doctor was going to come in after she measured the head and ventricles and she said "probably".  I asked if she could do a 3D picture for us and she soon as they brought up the 3D picture, it put everything in perspective for he is...perfect.  What a perfect little face he had...and he looks just like Jake.  So handsome.

After she took her measurements, she left the room to get the doctor.  This was the part we dreaded.  Up until this appointment, every time we had met with the doctor, we got more bad news.  Not even two minutes later, the doctor came in....a new perinatologist, whom we had never met before.  She started to scan me and asked me some questions about who I had met with (neurosurgeons, etc).  She then said "here's the cavium, yep, its here, its definitely here".  She turned to us and said "Are you familiar with the medical terms?"  We explained that we were familiar with the corpus collosum.  She confirmed that was what she was talking about and explained to us, while showing us the image on the ultrasound, that it was present.  I informed her that we were told that they could only see a partial on the previous exams, and she agreed that she saw the partial, but followed up with the fact that it is very hard to see the bottom half on an ultrasound and the top half is the most important.  What a relief that was to hear, as she pointed to all of the flowing blood in the section that we could see. 

Then she showed us a side view of one of the ventricles.  It was big.  But she quickly eased our minds by telling us that she saw nice thick membranes....which she indicated was very good because the thicker the membranes, the better for future brain growth.  She used the analogy of a heavy rock on grass.  She said that the thicker the grass, the better chance for the grass to grow again after the rock is removed.  It made sense to us. 

We had to actually ask her about the ventricle sizes...she said they were 2.3cm.  (23mm).  Obviously this is bigger than the 19mm they had been 3 weeks ago; but she eased our minds by telling us that is not a significant amount of change and that the measurements are always a bit off anyways, depending on how the images are seen.  Head circm measured 75th percentile...again good and not alarming huge.  We set up another appointment in four weeks.

Kevin and I left the office feeling quite good.  Of course we still hope and pray that the ventricles don't get much bigger, but for now, we can try and relax for the next four weeks and know that Austin is moving, kicking and growing well. 

Here's a pic of the lil guy....

Tuesday, January 11, 2011

And another day of NO answers.

Well we went and met with yet another neurosurgeon today.  From the research that I have done, this one appeared to have the most experience and expertise with hydrocephalus.  And I still believe that this is the case.  However, he was very negative.  And bottom line is that no one can tell us how things are going to pan out for Austin.  The brain is an amazing organ, and we just won't know if and what kind of damage may be occuring until he is here (and maybe still not even for a few years after that).   Back to square one with finding a neurosurgeon.  We have two that probably has more experience and definitely a better bedside manner....but the other is a lot closer to home and would mean a lot of less traveling.

I have started to network with other families who have been through what we are going through.  I found this to be the single most helpful thing when it came to dealing with Jake's diagnosis because doctors can only tell you so much...its the parents who have dealt directly with these issues that become our biggest assets.  I'm learning so much.  And I'm happy that we have some time to do our research and get things prepared as well as we can before Austin arrives. 

And how can I forget to mention all of the prayers and support we are getting?  Our family and friends are the best!  I have received many emails from people I don't even know, saying they are praying for Austin and our family.  The power of prayer is just so amazing to me and I know that all of your prayers are being heard.  I can't even tell you how much Kevin and I appreciate all of this.

I overheard Kevin talking to someone on the phone last week and he said something that has stuck in my mind.  He said maybe the reason that we have already been through so much with Jake was to prepare us for Austin.  And it couldn't have made more sense to me.  I can't imagine if this was our first pregnancy or if we didn't already have a child with special needs, how this would have devastated us. But just looking at Jake everyday has already showed us how wrong doctors can be and how blessed our child has made us.  One couldn't ask for a better little boy.  And he is going to be the best big brother!!! 

Wednesday, January 5, 2011

Baby Austin

So this leads me to baby Austin.  I'm two days shy of being 24 weeks pregnant.  We are currently researching and meeting with different neuro surgeons.  My priority is finding a neuro surgeon, and figuring out what hospital I will need to deliver in (whether thats in NYC or not), then finding a high risk OB, etc, etc.  We will not continue much longer at the current hospital and facility we have been doing all of my ultrasounds at, because the main neuro surgeon there does not participate in my insurance plan and overall, I have not been too impressed with the treatment I have gotten there.  Everyone is very negative....and all we need are positive thoughts now.

As of our last ultrasound (two weeks ago), Austin's venticles were measuring 19 mm (normal is about 10mm).  His head circumference was measuring about two weeks ahead, which we anticipate as the fluid grows, the head circumference will continue to grow.  All in all, this may not be such a bad thing, as the growing head allows room for the excess fluid.  He has been diagnosed with aqueductal stenosis, which is the most common form of hydrocephalus and its not anticipated that this will heal itself. 

I went for a "routine" fetal echocardiogram on monday, just to make sure everything was ok with Austin's heart.  Well, they found a regurgitation in the right atrium to the right ventricle, so we have to go back in a month so they can monitor it. 

Yesterday, I got 5 viles of blood drawn....I figure there is going to be a lot more tests in the next few months.

Next week is full of appointments.  On tuesday, we are going to meet with yet another neuro surgeon-our third consultation.  Wednesday I have a regular OB visit (which is going to probably be pretty useless since I'll be changing OB's in the very near future), and then friday we go back for a follow up ultrasound.  This will be my seventh ultrasound.  I've started to have a lot of anxiety with these ultrasounds because we have continued to hear bad news and worse news at the past few.  But, I am looking forward to seeing if the ventricle dilations have gotten worse.  Hopefully they are still the same.

The support we have gotten since we started telling our family and friends is really over-whelming. While no one really knows what to say, we appreciate that everyone is keeping Austin and us in their daily prayers.  Prayers work, so keep them coming!!!  He is listening.....I just know it....

Tuesday, January 4, 2011

All about us

I've decided to create a blog, to outline our story for everyone.  We have already been through so much and I feel the journey has now just begun yet again, so here we are.  My husband and I have the most wonderful 3 year old little boy anyone could imagine.  What a miracle we were given in him and everyday he brings us such joy and amazement.  On September 19, 2007, we welcomed our lil bundle, Jacob, into this world after a slightly uneventful pregnancy, complicated with polyhydramnios, at 37 weeks gestation.  Two days later, Jake failed his newborn hearing screening.  At two of months of age, Jake was diagnosed as deaf.  We were devastated.  With no history of this in either of our families, we did not understand how/why this could happen to us.  But, me, being the person that I am, within a month of his diagnosis, I had already researched everything I possibly could about deafness, found a wonderful ENT and had already begun Early Intervention for him. 

Here we are, 3+ years later, two cochlear implants later....many, many therapies later.....too many doctors and doctors appointments to even name......and the list could on for days......but we have a son who hears EVERYTHING we say.  So much so that we can whisper to him from the other room and he hears us, much like a normal hearing child.  Everything is falling into place.  Developmental issues were and are still present, but each day we make progress in that area as well.  Things really couldn't be better.

And to top it all off, I'm pregnant with another boy....due April 29, 2011.  We are prepared to have another deaf child....since we don't know what caused Jake's deafness to begin with, we are told that are odds are 1 and 4.  However, when I went for my 20 week ultrasound, we were told something unimaginable.  Our baby boy was diagnosed with severe fetal hydrocephalus (fluid in the brain).  I went for an MRI and they diagnosed the baby with aqueductal of the most common forms of hydrocephalus.  We were told, in so many words, that most parents in our situation terminate the pregnancy.  We were told to expect the worst....severe brain damage. 

I was devastated.  My husband was devasted.  We had already been through so much, or so we thought, and now this??  I consider myself to be a religious person and immediately turned to God with the "why us, why me, why him" questions.  Every day that passed, I could feel him getting stronger and stronger and kicking inside of me and I knew that I wanted him, however things were going to be.

I know its not going to be an easy road for us, but I do know that this is the road that was meant for us.  I just hope and pray that one family can have two miracles in a lifetime.