Friday, March 7, 2014

Is unnatural natural??

Today we met with the cochlear implant coordinator, one of the surgeons, and two other doctors to discuss Lil Bill and the possibility of him getting the implants.  Billy, Lil Bill, and I walked into the room and all four of the cochlear implant team members were sitting in there, waiting for us, we were not expecting it to be so many people.

The appointment was very informative.  As you may or may not know there is controversy about the cochlear implants.  Both sides have very strong opinions on if they are right or wrong.  So I was a little nervous going into this appointment, meeting with the cochlear implant team, that we would receive bias information.  I was pleasantly surprised when that was not the case.

The surgeon asked us what our goals were for Lil Bill.  He talked to us about ASL and the culture of the deaf and we explored that option.  He then talked to us about the implants and what that would be for Lil Bill.  We discussed our fears of relying on only ASL.  Due to Lil Bill's spastic quadriplegic CP, he is very tight.  His arms are more affected than his legs.  We believe relying on signing as a main means of communication has the potential to be very difficult for him.  That was initially our motivating factor for wanting the implants.  It was not because I didn't feel like learning ASL and adapting to my son, because we are still open to learning it.  I just think every family's situation is so different.  Some families may chose ASL and not want to get implants, and I think it is great for them, that is their choice.  However for our family, we think what would be best for us is to get Lil Bill the implants.  And that is our choice and we are OK with that.  It is all about people's circumstances, and everyone has different ones.  So I was happy that the surgeon took the time to explore all options with us.

I keep thinking about something the surgeon said.  Billy told him that he thinks Lil Bill hears more than we give him credit for.  The surgeon said, that he certainly does hear.  But due to his auditory neuropathy, he hears static and it is all mushed together.  He does not hear what we hear when we talk to each other.  He currently does not process language in such a way that he can understand it.  He said that if he hears mush, he will speak mush.  That actually made me feel better and hopeful.  Lil Bill really does try to talk but does not have much of a vocabulary.  He has said mom, and actually said dad today for the first time! :)  But he does not say either regularly.  When he stops hearing mush, he will probably stop speaking it.

Now before saying what I am about to, keep in mind we still need to have an MRI, a cat scan, and genetic tests throughout the next month to officially qualify Lil Bill to be an official candidate for the implants, but the team agreed today that Lil Bill seems like a great candidate.  With all the medical information they presently have and from watching him, they think he would do really well with the implants.  They kept saying today that he tries to communicate, he is very vocal and has such a strong desire to interact.  He really does, he is truly a people person, he must get that from his dad! ha!  It was also relieving to here that they do not believe some of Lil Bill's other issues will hold him back from talking verbally (such as his left vocal cord paralysis).  While he does have other limitations, they are remaining positive so I am as well!

I was also very surprised that they said the cochlear implant surgery will only take about 2 1/2 hours.  Then they said if all goes as planned, Lil Bill will only be in the hospital over night.  I imagined him being in the hospital recovering much longer, that is what I read on the internet (SO HEY IT MUST BE TRUE
RIGHT? (;   ) After the surgery, they will turn the implants on 3 weeks later.  They wait so long because the area around the implant in tender and if they turn them on right away the sound waves could cause pain.  They do not want him to associate sound with pain.  Our last tests are done April 15th and if everything comes back ok, they said Lil Bill will be getting the implants in May.  That seems so far away and so close all at the same time.

I have never been so scared about something.  I mean after today I feel like the chances of the implants working are really really high.  But the anticipation is always the worst.  Billy and I were talking today about Lil Bill's first surgery.  It was the PDA ligation (heart surgery to close a valve in his heart) when he was only 2 weeks old, he was not even a pound and a half.  Well we had not time to go through the anticipation.  We went into the NICU on a Friday morning to visit him and they told us the surgery was going to be done later that afternoon.  That was also the first day I ever kissed him.  The surgeon was telling us about the risks of the surgery (including death) and right after that they asked if we wanted to kiss him.  It was the most terrifying and beautiful experience.  Never how I imagined giving my son his first kiss, but it is our story.  It is amazing that there is a surgeon willing to operate on such a tiny baby's tiny heart.  We saw the scar afterwards and we couldn't believe how little it was, and that they performed heart surgery through an incision so small. Technology is truly amazing.

Before deciding we were going to get the implants, a reason I did not want to get them was that it seemed unnatural.  But then it hit me, what about Lil Bill's story is natural?  Even going back to my pregnancy with him.  Having to get a cerclage, a pessary, and weekly progesterone shots.  Then after he was born, being put on a ventilator immediately, and staying that way for 12 weeks.  Several surgeries, and machines were keeping him alive for months.  He was on the jet ventilator for a long time.  The jet ventilator pumps 420 breaths into the person on it per a MINUTE.  What the hell is natural about that?  So if we wanted to stick to things that were only natural, honestly Lil Bill probably would not have survived long enough to have the option to be saved.  My weak ass cervix would have done it what was naturally trying to do weeks prior.  Just like what it did with our first pregnancy with Aiden.  We have always used the technology and resources available to give Lil Bill the best shot.  So why stop now if we believe this is the best shot for him?  Unnatural is natural to us.

So our plan is to stay in the day, not worry about May and the surgery until May and the surgery gets here.  I am just going to enjoy my baby boy, and his happiness.

Every single one of Lil Bill's issues can be traced back to him being born premature, at only 23 weeks and 1 day.  All of the 'unnatural' things that kept Lil Bill alive were initially determined a success through research.  The March of Dimes funds research to help maintain a full term pregnancy and helps babies get healthy.  We started participating in the March for Babies walk after we lost Aiden.  We walked in it the first year with Aiden in our hearts.  We walked in it the second year with Aiden still in our hearts and Lil Bill in our arms.  This year we plan to do the same.  Please help us and join us on our team to walk.  You can also donate to our team and all the money raised will go directly to the March of Dimes.


Tuesday, March 4, 2014

he is not broken...

Well there is lots and lots going on in our world this month.

We are kicking off the month with a G.I. appointment this Thursday, followed by an appointment with a cochlear implant surgeon on Friday.  Why are we meeting with a cochlear implant surgeon you ask?  Good question, I will get to that later in the post.

The following week we have an IFSP plan meeting with several different parties to revise Lil Bill's treatment and goals plan.  We are also going to be seeing the eye doctor that week as well.  (Keep your fingers crossed for no glasses! We already have a hell of a time trying to keep hearing aids and braces on our boy!)

The following week Lil Bill will go under general anesthesia for an MRI, a cat scan, a bronchoscope, and to repair his frenulum.  The MRI and cat scan are screening for the cochlear implant candidacy.  Since he was going under general anesthesia his ENT doctor wanted to ad a bronchoscope to check on his airway diseases and to see if his left vocal cord is still paralyzed.  He also wanted to fix his frenulum.  The frenulum is a little piece of tissue maybe??  Basically its the thing that connects your tongue to the bottom of your mouth.  Lil Bill was tongue tied and actually broke that piece on his tooth, tried to fix it himself ha! But it is a little messy so they are going to fix it up too. 

We will be adding a pre op appointment before all the tests at some point, just do not know when.

We are going to end the month with Lil Bill's primary care doctor whom we really like!  This is a very busy month for us.  I do not think we have had so much going on in a month since Lil Bill came home from the NICU.  We will get through it.  Hopefully Lil Bill will not get sick this month, which would many appointments on to our schedule! 

He has not been sick in three weeks (knock on wood!)  This season (since Octoberish) has not been so kind to my little man.  He has been sick more than he hasn't.  When he gets sick he coughs so hard and so frequently he throws up so much.  Because of this he has not gained weight at all.  He gets weighed at daycare frequently and we have noticed a slight rise in his weight.  I was so happy! I hope it stays that way.  I am interested to see how much he ways at his G.I. appointment later this week.

SOOO we are meeting with the cochlear implant surgeon, and doing a bunch of tests for it?? For my readers to who do not catch on quickly, or rather because I never formally wrote this, we have decided to get the implants!  After much research, talking with professionals, and other families who have gotten their child the implants we choose to do so.  It is what we think would benefit Lil Bill the most.  Due to his hearing loss, and his auditory neuropathy, we do not know exactly how much or what he hears. 

It was best explained to me like this.  You know when a radio station goes staticy and you can only hear bits and pieces of the song?  Or when its just straight static and you can't hear any of the song?? Well that's exactly what auditory neuropathy is.  We do not know how severe Lil Bill's is.  We know that sometimes we could scream his name from a room over and he will hear it.  We know that sometimes we can scream his name from behind him and he won't even notice.  He has what we like to call hearing moments.

Here is a link.  The links under number 1 are what the cochlear implants will sound like.  The links under number two are similar to what he currently hears.

I will never forget the first time we just knew he heard.  We were at his mom mom's house and the fire alarm went off when someone was cooking.  Lil Bill jumped and looked around and actually seemed to find the sound amusing.  Prob the only person on the planet to find that sound amusing huh?  So we were so excited and went and stood right next to the fire alarm with him.  Let's make one thing clear, there was no fire!  But we were so happy for him and he seemed so happy to hear something. 

Since then, it is very apparent that he does hear some times.  There is no denying that.  However with his booth tests, with his hearing aids on the highest settings, there is still not response until 70-75 decibels.  He displays patterns of babies and toddlers who can't hear.  One being, his vocalizations.  He used to babble, he used to vocalize so much.  He still will occasionally, but compared to how he used it, he does it so so much less.  This is because he can not hear himself and he is not getting reinforcement from his audio sense that he is actually making sounds.  He mimics us occasionally.  Simple sounds like AH and OH.  While he has say hi, yea, no, and mum (yes mum, he picked up a British accent somewhere), he does not say any on the regular.  He does try to communicate though.  He eye gazes and he grabs at things when he has the physical ability to do so.

Due to his physical limitations, we believe that signing would be difficult for him.  Billy and I have thought long and hard about this and had several discussions and we believe it is what is best for our son.  Based on his hearing loss, abrs, booth tests, and lack of progress with speech, he is a candidate for the implants.  However several other tests need to be done, such as the MRI and cat scan mentioned above and we have to get genetic tests done.  If all these tests come back ok then at some point in the near future Lil Bill will receive the cochlear implants.

I am so excited yet so anxious and scared.  To give my son the gift of being able to hear which technology has made possible is amazing.  Though I feel self doubt in wondering if we made the right choice for him.  We have made so many medical and developmental decisions for him and I always think about them after hoping we did the right thing.  But to implant him with something that will take away all of the natural hearing he has in order for him to hear everything more effectively, wow its a big decision.  My biggest fear is that years down the road he will think we were trying to fix him by doing this.  I do not want to fix him, he is not broken, I just want to offer him any opportunity I can.  He has had it so hard and has overcome such much, and continues to, so gracefully.  I admire him for his strength.  I just want to make his life easier and this seems like the option to do that.

More to come!

Monday, February 17, 2014

an update!

Well been a long time since I wrote on here.  Life has been chaotic, between work and school for both me and Billy and taking care of Lil Bill we do not have much time to ourselves these days.  And when we do, we do laundry or dishes, ha the joys of parenthood!

It has been a very tough couple months for Lil Bill.  He has been sick with respiratory illnesses more than he has been well.  For the past couple months he spends about two weeks sick at a time, then a couple days feeling well, then sick again.  However he has only had to be hospitalized once and only required a little bit of oxygen.  So for someone with chronic lung diseases and multiple airway diseases that is pretty good!  Because of his airway diseases, he will go from not coughing at all to coughing uncontrollably and wheezy within hours.  We have several breathing treatments to use with him for when this happens.  We have found, that those breathing treatments do not have anything on a steamy room.  The steam really clears up that mucus!

That one hospitalization did end with us getting all of our old medical equipment back at home with us.  We now have the oxygen concentrater again, a bunch of oxygen tanks, the pulse ox monitor, and a suction machine.  I do have to give it up for the suction machine.  It works so well and Lil Bill feels so much better after.  I have concluded that every baby should be born with a suction machine.  Those little suction bulbs just are not that great.

They sent us home with all the equipment so if Lil Bill gets sick enough again and just needs a little bit of extra support, then we can do it here rather than have him hospitalized.  We have not needed it yet, so I hope just having it here wards off bad spirits!  I just cannot wait for this flu season to be over.  When Lil Bill came home from the NICU last year it was January, and we did not leave the house until April for anything other than doctor appointments.  And it worked, he never even caught one cold.  But we couldn't keep him in a bubble anymore.  I think him being in the medical day care he is in, being around so many other kids does not help in that aspect.  Home care nursing was mentioned to us as an alternative to the daycare.  I could never take him out of there.  Nothing comes close to warming my heart as much as walking in and seeing him playing with other kids his age, actually laughing and engaging with them, with a huge big smile on his face.  Unlike his momma, Lil Bill is a social butterfly, he loves interacting with kids his age.  I couldn't take him away from that.

Today, Lil Bill was fitted for different adaptable equipment.  He was fitted for a stander, a feeding and activity chair, a bathing chair, and a wheelchair stroller.  I could not help but to feel a little sad about it.  All this equipment to help him be able to do things that most of us do without even thinking about.  I am trying to be excited about it, I know it will only help all of our lives be easier.  I just have to come to acceptance about it.  Our life is not typical, but it is ours.  Lil Bill handles everything so gracefully and doesn't seem bothered by all of the hurdles he goes through everyday, so why should I?

So, on the topic of hurdles, we also met with a speech therapist at the hospital today who is part of the cochlear implant team.  She gave us an idea of what the therapy will be if we do go through with the cochlear implants.  See, the cochlear implants are not just a quick fix.  It is not like turning on a light switch and having it go from dark to light and everything is all good.  The cochlear implants are only successful when followed by intense therapy.  She said the first year is critical, and we will  be going there for therapy at least twice a week.  She said she recommends Billy and I alternate who takes him.  So that way we are both learning about the therapy and will know how to practice it at home.  The therapy will have to become just a part of our lives at home.  It has to be consistent and the whole process is a big commitment.  The therapy is audio visual therapy.  Since Lil Bill has hearing loss and a hearing disorder, he relies very much on his visual sense.  This therapy helps him rely on his hearing, helps him realize he does hear, helps him process it, and embrace it.  An example of how this is done is covering your mouth when you are talking to him and trying to get him to make the same sounds or words are you make.  The therapist used this analogy: When someone breaks their arm and the arm is in a cast for months, they then go to therapy to strengthen the arm that was in the cast, not the arm that has been free.  This is basically what the therapy does.  Think of the hearing as the arm in the cast and the vision as the arm that has been free.

We have decided we are going to go with the implants, if appropriate.  It is recommended by the professionals that he gets them, but he has to go through a series of MRIs and other tests to make sure everything is ok physically to get them.  For example, if his auditory nerve is too close to his facial nerve it will not be recommended he get them.  Our ultimate goal is for Lil Bill to communicate verbally.  We are well aware that he has other issues that may get in the way of that such as left vocal cord paralysis and CP.  With his type of CP he is super tight everywhere except along the neck muscles.  If Lil Bill cannot talk verbally, at least he will be able to hear more than he is hearing now.  The speech therapist told us about a girl who has several cognitive and physical limitations.  She said she got the implants and laughs at the sounds and noises she hears.  She gets excitement from them, even if she doesn't understand them.  So even if all this procedure does is enhance Lil Bill's life with excitement, then that is still better than not doing it.

On a lighter note, Lil Bill has been ranging from 18-19 pounds 15 ounces since September.  Since he has been so sick for so long, and he always coughs so hard he throws up when he gets sick, weight gain has become an issue.  Well today he was weighed at daycare and I am happy to report Lil Bill is over 20 pounds finally!! 20.004 pounds.  He was recently put on a diet to gain weight and has not been sick in a little over a week, besides a 24 hour stomach bug this weekend, so hopefully he will start growing again! Back in September they wanted his weight gain to slow down, it slowed down too much, now they want it to speed back up.  Lil Bill's body is trying to keep up with the different things the doctors want it to do.

Friday, November 8, 2013

An Update! About Time Right?

Hello All! Well its been a while since I updated this.  I really wanted to keep up with this and was really feeling where it was going.  However life is so busy and hectic lately.  Nothing really bad is happening, just barely anytime to sit long enough to even think about doing this, until right now of course!

So whats been going on with Lil Bill?  Well lets start with good news first, its been two weeks without a feeding tube!! I still am not fully accepting its gone out of fear it will be back, but either way, this is a huge milestone for him and the longest time without an NG tube since March! Hes been doing very well, his speech therapy (who also works on feeding) helped so much and so quick.  Although I think we needed some of the therapy for ourselves too because we had so much anxiety about feeding him, so just like him we also needed a push.  He's doing great with taking everything by mouth.  He takes his formula and purees.  He is still around 20 pounds.  He was put on a diet recently because he was growing in weight much faster than he was growing in length, so the diet seems to be doing its job.  Heres a picture of him with no tube!! Its so weird (but amazing) to see him without a feeding tube all the time!

He also started at a medical day care a couple weeks ago.  We are still adjusting to that.  Its a great place and I am so glad its so close and he gets all his therapies there now, which is good and bad.  I enjoyed seeing and being a part of his therapies and knowing his therapists but it does cut 3 appointments out of our weekly schedule and I think he gets some of them more than once a week so that's a good thing.  

Lil Bill has been battling a viral infection for a couple weeks.  He gets breathing treatments at home, one twice a day (that will be even after his viral infection is gone) and the other just as needed.  He seems to be doing better.  We saw his pulmonologist yesterday and he explained that any cold will be more dramatic in Lil Bill because of his airway issues (tracheomalacia and laryngomalacia).  Which explains why he went from not coughing at all to coughing uncontrollably within 24 hours.  This is our first flu/rsv season not completely in the hospital so it is a little nerve racking.  I am sure this is the first viral infection of the season, with more to follow (i hope not but I am just being realistic with myself) but we have avoided going impatient so far with it so thats a great sign.  

His pulmonologist also mentioned a trach.  He is not recommending it right now but that would be our next thing to talk about if the air way issues cause more problems and if his carbon dioxide levels remain high.  I am trying not to even think about it yet because its not what he is recommending right now.  After he said that I didn't really say anything in the appointment (and ask Billy that is so unlike me).  I suppose I was a little surprised.  After all, I think the possibility of a trach was behind us.  But we will cross that bridge when we get to it.  He is going to be following us every month during the flu and rsv season.

We also got the results of Lil Bill's second sleep study.  The results showed that they need to raise the settings on his cpap from 4 to 8.  Even at 8 he still has 3 episodes of sleep apnea.  We are really trying to make this CPAP work but its been hell.  Lil Bill hates it and screams the whole night, even when we take it off now.  The doctors keep saying only time will help.  In the meantime I will keep keeping my local Dunkin Donuts open because of lack of sleep!

Lil Bill also had his hearing aids turned up a couple weeks ago.  I actually think its making a difference.  He seems to respond to more noises.  His responses are in his own way, his eyes get bigger, or he flings his head or tenses up.  I feel like I finally have time to focus on his hearing loss and disorder.  So far its been one thing after the other and I have not really had time to process it.  His lasts tests showed that sound waves do make it to the brain, though they are delayed getting there.  In a typical hearing person, sound waves get to the brain in 50 mili seconds, Lil Bill's sound waves get to his brain in 250 mili seconds.  This could be because of his auditory neuropathy disorder or because of his delays in general.  Either way it is what it is.  So we are trying to talk a little slower, in case he is hearing us, we do not want it to overlap! Can't do that especially with my singing of made up songs to him!

I never really explained his hearing disorder on here.  It is a auditory neuropathy spectrum disorder.  Basically, it is like a staticy radio.  Some things get through and some things don't.  There are varying degrees of the disorder and we do not know how mild or severe his is yet.  Its basically an electrical problem with the auditory nerve.  I actually have a simulation of it that I was given by one of his doctors.  Here it is.  It starts with the most profound, than severe and to moderate, mild, and normal.  

I almost cried when I heard that.  So we do not know where he falls.  From my knowledge, the cochlear implants help more than hearing aids with this disorder.  We are still in our hearing aid trial so that will be another bridge we cross when we get there.

Motor skills wise, Billy has started to really enjoy jumping and walking.  He can't hold his head or upper body up, but if you support his trunk and up, he will take steps and jump.  He thinks its funny and he gets such a proud look on his face when he does it.  He is doing better with tummy time, and still making small progress with head control however we are not there yet.

Oh and he does have three teeth now!  :-) AND :-(  my baby is growing up!

I am going to try to update this more.  I am sure I left some things out that have happened within the last month to two months.  But those are the highlights that I remember! 

Thursday, September 12, 2013

The dreaded day we hoped would never come...

I feel silly updating this with the news we received today.  But the intention of making this blog was to keep people updated on Lil Bill.  So updating I will do.

Well today was an informative day.  We went to a new pediatrician.  Our old pediatrician recommended that we see someone else for primary care for Lil Bill, this new doctor does primary care for medically complex kids and kids with special needs.  I was hesitant on making the switch, for various reasons.  I liked our old pediatrician  he was always good to us, he called us personally a couple times.  Everyone from the nurse who answers phones and deals with their faxes, to the doctor, and the nurse who took vitals knew us because of us coming in so much, because of paperwork going back and forth, I felt comfortable.

The other reason I was hesitant was because, well I do not suppose its any parents dream to take their child to primary care at a special needs and medically complex clinic.  I guess a part of me was still in denial, that Lil Bill's issues were not going to be long term.  Well today that denial burst.  I am sure it will come back.  Around my son, their are several layers of denial.

Today we met with this Doctor.  Wonderful man, probably one of the most polite, caring, personable, and experienced Doctors that I have encountered with my son.  He spent two hours with us, talking with me and Billy and interacting with Lil Bill.  He truly listened to us and he was honest with us as well.  It must be so hard for such a nice man to be in his career choice, working with medically complex children and special needs children.  Because to be so nice, and have to tell parents upsetting news about their child must be difficult.

Today we were in that difficult situation.  Let me first start off by saying me and Billy have been being prepared for the day like today, since a couple days before Lil Bill was even born.  And after that day too.  Different doctors on different occasions, they have all been planting seeds in our heads and trying to make the blow that came with this day lighter.  And for that I am grateful because it worked in some sense.

Today the Doctor diagnosed Lil Bill with spastic quadriplegic cerebral palsy.  Up until now we were being told he was too young to diagnosis and we would wait and see.  He disagreed.  He said knowing what Lil Bill's brain scans look like, and knowing what he is showing us now and his whole history he does not think he is too young.  I thought I was handling this conversation pretty well, until he looked at me with concern and said in such a caring voice, 'do you need a tissue?'

Even though we have been prepared for this I cannot help but feel sad. And scared.  Lil Bill has hearing aids, we found out yesterday he is near sighted and he is almost at the point he will need glasses, he has different airway issues, sleep apnea, bpd or chronic lung disease, he has all these issues.  And now this too.  We have been prepared for all this issues, being told they may happen, but its easy to think that, only one will happen, or that we will be the exception.  But we aren't.  We have beaten the odds of survival, given a 25 percent chance to live, but we have not beaten the odds for other issues.  I cannot help but feel guilty every time, cause everything can be traced back to him being born early.

But I remember when he was a couple days old, and they told us to get involved because that might be the only time we had with him.  And I remember hoping so bad that he would pull through, no matter what came with it.  How can I stay feeling sad?  I got what I wanted.  After losing Aiden and everything we went through to have Lil Bill make it to a viable gestation age, and seeing what looked like torture at some points to keep him alive, how can I not be grateful?  We all made it out alive.  I may have a medically complex and developmentally delayed baby boy, but I have a baby boy.  I have a precious, happy, energetic, strong little boy who finds so much comfort in my arms.  What a miracle that is.

So now with this diagnosis, nothing really changes.  We are already physical therapy, occupational therapy, and feeding and speech therapy.  We already do stretches with him multiple times a day, so we are just still waiting and seeing what Lil Bill is going to do.  I found a place in Canada that does an intense therapy with children with CP and other issues, I asked the doctor what he thought about it. He told me not to run off to Canada just yet.  He said Lil Bill might not need it.  What a relief that was.  I have hope, the doctor has hope, we do not need to do something extreme like that.  He said Lil Bill is still so young, he has plenty of time to show us what he can do, learn and develop at his own pace before taking interventions like that.  It was really nice to hear.

I am one to kind of look at the negative side of things, and Billy the positive.  Finally, I feel like I can see the positive like Billy.  I am grateful for my son and hopeful.  He may be able to do more than we believe or think.  And I feel empowered to help him get there.

So spastic quadriplegic CP is when all four limbs have tight muscle tone.  It is a scary name, to me at least, but the outcomes of children vary.  We still do not know what path Lil Bill will go down.  Oh, I almost forgot to ad, they want Lil Bill's weight gain to slow down! They said that in the height/length percentage he is in the 95%.  They are changing his diet.  I thought, what a funny problem to have.  All his life we have celebrated every ounce he has gained! And now they want him to slow down, life is funny!

So the last thing I will say is that I went to therapy a couple times when Lil Bill was in the NICU.  The therapist was talking to me about raising a child with special needs.  She said that the feeling I will get when he learns to feed himself will be the same feeling another parent gets when their child scores a goal in soccer.  I believe that today.  Our accomplishments might end up being different from others, they may not but they very likely might be.  But they will be ours, and they will be beautiful and wonderful.

Thursday, September 5, 2013

A look at the past...

While I am sitting here waiting for the first football game to kick off, thanks weather delay, I remember this time last year.  I remember watching the first game and thinking, if we can just get through this season and lil bill is still alive then we will be ok!  Well little did I know that he would be home in time for the Super Bowl, and here we are the next year.

So it is official, Lil Bill is a one year old! I can not believe it.  His birthday was a beautiful day.  We stopped by the NICU and dropped them off some birthday treats then had a party with family and some friends.  I thought that I would have negative feelings on his birthday.  While it was his day of birth it was also one of the most traumatic days of my life.  But I didn't.  I embraced every ounce of gratitude I felt.  We have come so far.  I have been doing alot of processing everything that has happened since we found out that I was pregnant lately.  Since medically, there is nothing to new with Lil Bill I thought I would update share some of our story of how Lil Bill got here.  Don't worry I won't go TOO far back!

We knew that I was going to be a high risk pregnancy after losing Aiden at 20 weeks.  But we thought we had a plan that would work.  For me the first trimester was not scary.  I know for many people it is, because of the risk of miscarriages.  I knew, having an incompetent cervix my issues would make the 2nd or 3rd trimester the problem.  So lets fast forward to then.

When I was 18 weeks, I finally got the cerclage, with little to no cervix left.  For those who don't know an incompetent cervix means the cervix shortens and softens way before it should in a normal pregnancy.  A normal pregnancy the cervical length is suppose to be about 3-4 cm until the end of pregnancy.  At the time I got the cerclage my cervix was .9mm.  But for a couple weeks it worked, I did not lose any more length and I became hopeful.  But then, at one of my weekly ultrasound appointments it was seen that my cervix was .3mm.  One of my doctors suggested putting a pessary in.  I was willing to do anything to help.  So we did, and for two weeks my cervix was back over 1 cm.  I was so happy, the pessary was working!  And then, I will never forget this day.

I was 22 weeks pregnant and we went in for my appointment.  The doctor came in with a discouraged look on his face.  He told me that it appeared from the ultrasound that I was dilated, and my membranes aka the water sac the baby was in, was bulging through the cerlcage.  He told us we had three options.  We could terminate the pregnancy if we did not want to have a very premature birth that would leave us with a child with disabilities, we could go home and let nature take its course, or I could be admitted into the hospital and stay on bed rest there until the baby came.  We chose option number 3.

Days later, I believe around 22 weeks and 5 days, I was 3 cm dilated.  I was told that they could not try to stop labor until I was 23 weeks and they would not try to save the baby unless he was 23 weeks.  2 days.  2 days.  2 days.  Days that could be wrong due to measurements, but that did not matter.  We had to wait 2 days before any intervention could be taken.  Those were the 2 most stressful days of my life.  I went into labor one day later, and I remember them telling me if it was 16 hours later they would try to stop labor, but there was nothing that they could do at this point.  16 hours! That was way more ridiculous than two days.  I do not blame the doctors or nurses who were telling me this.  I know a patient like me at that time is very stressful for them too.  They have to deal with ethics, morals, rules, and guidelines.  I just prayed for strength to make it through 16 hours.

Luckily, due to a paperwork mess up somewhere,  I was given the steroid shots for the baby's lungs one day before I was suppose to. During these 16 hours we got a chance to speak to the NICU.  Twice.  We got numbers, odds, chances, and statistics.  We were told what to expect if we had him between 23-24 weeks.  The odds were not good.  They said he would have around a 25 percent chance of making it.

FINALLY the time came, I was FINALLY 23 weeks! They would try to prevent labor and they would try to save my son if he came.  I was so relieved to make it this far.  I was started on a drug to slow down labor.  The side affects were horrible.  I felt like I was being burned from the inside out.  I felt like crap but did not feel any serious contractions.  I was on the drug overnight from 8/30-8/31.  I was hoping for good news.  A couple hours later I started feeling contractions.  I was checked again, this time, I was not 3 cm dilated, I was 9 cm dilated.  They said it was time to start pushing.

My water had not broke.  And they did not want it to.  They wanted my son to be born in his water sac to help protect him.  He was 17 weeks early, very tiny, and breech.  We were very fortunate that his water did not break.  Yes, I delivered my son in his water sac, with no pain meds (not by choice may I ad).   After having him, the water sac was given to the NICU team, I do not even know how many of them there were, maybe between 5-10.  It felt like forever they were over there, asking for supplies, talking with themselves.  I think it was only a couple minutes though.  I just wanted to know is he alive, is everything okay, is he dead?  Eventually we heard them yell YES! and clap.  I remember Billy saying well that can't be a bad sign.

Then, the first time I saw my son.  They wheeled him over.  He was in a plastic bag with a tube sticking down his throat.  He looked brownish/redish and was so tiny.  He was 1 pound 7 ounces and 11.25 inches long.  He looked lifeless.  I remember them asking if we wanted to touch his forehead.  Everything in me said no.  I was too scared I would give him germs and make him even sicker.  But I did, I touched his forehead.  I was fearful, I was sad, I was angry, and I had no clue what kind of journey was started that day.  It was the beginning of a beautiful, terrible, amazing, difficult road.  The road that has led me to where I am today.  With a one year old son, who is the strongest and happiest person I know.

Like I said earlier, his birthday is one of the most traumatic days of my life, but is also one of the most beautiful because I witnessed the greatest miracle I have ever know, and it started that day.

Since pictures are worth a thousand words, Heres A Video of Some of our Story

Wednesday, August 28, 2013


Well besides the usual therapies for Lil Bill things have been pretty calm appointment wise the last two weeks.

This week though we did make it to see the neurologist.  I was nervous going there, the neurologist appointment is one of the more nerve racking ones for me.  But to my surprise not a whole lot happened there.  I mean we already know about the two PVLs, the loss of brain tissue on the left side, and the small brain.  We also know that Lil Bill is delayed with gross and fine motor skills, and that he is tighter on his right side.  While this is concerning to the neurologist, we are in this 'wait and see' period.  Lil Bill is about to be one (yay) though adjusted he is only 8 months.  They typically do not diagnosis until the child is around two.  So the treatment is the same that we have been doing.  Physical therapy and occupational therapy weekly, and speech and feeding therapy will start next week!  It is a little frustrating being in this wait and see period but at the same time it is nice to know there is hope that he will make great progress before getting a diagnosis.

And yesterday we FINALLY got the hearing aids!! I never thought I would be super excited to get hearing aids for my son but I was.  They are unsure that they will help him so we will be following up monthly to track his progress and adjust the settings if needed.  So fair the verdict is inconclusive! Some moments I think that he hears, and others I can scream from behind him and he won't even know.   I have been testing him with every noise I can think to make, if he can hear me I almost feel bad for him because I have been a little loud and crazy :)  But I suppose nothing has changed since that was the case before too.  So that is another wait and see thing that we are in.  Waiting to see if the hearing aids will help or if he will be a candidate for the cochlear implants.

Of course tonight we heard one of his hearing aids clicking.  We couldn't find anything about it in the manual so we will have to call tomorrow.  Technology is a blessing and a frustration all in one.

Tomorrow we will also finally be getting the C PAP machine.  Lil Bill will need to wear it for naps and overnight sleeping.  It is hard trying to ad two different things into our routine in one week, the hearing aids and the CPAP but I know we will adjust.  I will update to see if it helps any within the next couple days.

Also we got the OK from G.I. today to switch his feeds again! I was so happy we are getting back to our 'normal' feeding schedule.  He can now get ng tube fed 6 ounces in 1 hour, 5 times a day.  We can still feed him by mouth during his off times of feeding but they do not want us to subtract what we are feeding him by mouth from his tube feedings yet.  I see this being a problem but I will wait and see before I question them. The goal is to not need the tube anymore and if Lil bill if getting fed that much through his tube I am worried he will not be hungry enough to even try to feed by mouth.  We will see how that plays out!