7.31.2012

Hydrocephalus

Hydrocephalus is defined as the excessive accumulation of cerebral spinal fluid in the brain.  Without treatment, it causes a great deal of pressure on the brain, resulting in damage or even death.  There are two main forms of hydrocephalus, congenital and acquired.  Although A&R were diagnosed at a very young age, they were not born with this condition.  They acquired it as a result of the circumstances under which they were born.   

What does this mean for our family?

Hydrocephalus in kids as young as A&R is most commonly associated with Cerebral Palsy.  In essence, CP is either low muscle tone or high muscle tone.  Tone is not exactly what it sounds like.  It doesn't originate in your muscles but is controlled by your cerebellum, which is located in your brain.   

Upon discharge from the NICU, Aiden and Ryan had MRIs of their brains.  All these MRIs did was confirm what we already know.  They have brain damage.  No one can tell us what this means for their future or their actual development.  We were told to expect some form of CP, but not enough is known about the brain in order to determine how severe it will be.  All that is known for sure is that they both have significant volume loss in their brains and that Ryan would require more intervention than Aiden. 

When we had this conversation with Dr. Mittler, my world was shattered.

Enter Dr. Google.  Since our real life doctors have to prepare us for worst case scenario, it was my job to seek out best case scenario.  Apparently, the brain is so magnificent, that it is able to make new connections for whatever is lost due to brain damage.  That is why therapy works and why it is important to begin therapy as soon as possible.  Even better, babies this small have a pretty good chance at making these new connections since their brains are still developing. 

World is slowly being glued back together.

So, here is the deal.  Aiden & Ryan get physical therapy once a week through Early Intervetion, which is a program funded by the state.  We just requested additional services (more PT plus hopefully OT) because they are a bit more delayed than their developmental pediatrician would like.  Aiden was diagnosed with low tone, which means his muscles are too loose for him to be able to carry out a particular action.  Ryan, on the other hand, was diagnosed with high tone.  His muscles get tight, or spasm, which prevent him from being able to do certain things. 

Regardless of this early diagnosis, we haven't a clue what the future holds.  Like I said before, with therapy they CAN improve and go on to lead normal lives.  We just have to wait and see as they develop.  I hate this waiting game.  What we do know, though, is that their therapists do see improvement and their physicians are somewhat pleased with their progress.  While we hope that Aiden & Ryan beat all odds and remain unaffected by their condition, we are prepared for anything.  They will always be our sweet boys and they will always be loved like no other. 

The boys are 10 months old and their motor skills are at a 4-6 month level.  There are days when I can't help but get discouraged, but to be quite honest, this mama knows that all they need is time.  After all, time heals all wounds, right?

10 surgeries and counting (part II)

Ryan's surgeries to date:

October 2011 - reservoir placement

As I mentioned in his story, Ryan had a reservoir placed when he was exactly one month old.  This was a route through which his nuerosurgeon could extract CSF from the ventricles in his brain.  The purpose of this was to prevent further brain damage until he could 'make weight' for the shunt surgery.  See?  He was a fighter from day one.  Ryan was tapped every other day.  The days that he wasn't tapped, he had a much harder time remembering to breathe and keeping his heart rate at normal levels.  

This was a day or two after the procedure.  He was re-intubated while he was under anesthesia, and needed a few days before he was able to breathe on his own again.

November 2011 - shunt placement

Finally, baby boy was big enough for his shunt.  We were nervous, but we knew he was in good hands with Dr. Mittler.  And we knew that this was the surgery that would get him off oxygen.  I guess I should explain exactly what a shunt does.  The boys have what's called a  vp (ventriculoperitoneal) shunt.  They have a plastic valve implanted in their brains that is attached to rubber tubing.  The valve fills with CSF where it then travels through the tubing that leads to their belly.  This is where the CSF is absorbed back into their bloodstream.  They have around 6 feet of tubing in there so that the shunt can grow with them.  Unfortunately, shunts are not perfect and can malfunction or become infected.  You can see the valve through the skin on their heads and you can follow the tubing with your fingers and feel it all the way down to their bellies. 


A few days post-op, Ryan came off oxygen :)


January 2012 - laser surgery for ROP

Same deal as Aiden's ROP surgery. 


Not post-op, but cute nonetheless

February 2012 - shunt revision due to malfunction

At some point, Ryan's shunt started working too well.  You see, the body is great at balancing how much CSF should be circulating through the ventricles at any given time.  Shunts, not so much.  Because Ryan's shunt was taking too much CSF from his brain, his sutures (the four pieces of bone that make up the skull) were overiding.  In addition, his head was getting smaller, and misshapen.  That's why his head is now lumpy and bumpy.  The hope is that it will round out eventually.  He now has a programmable shunt that can be adjusted if need be.  Dr. Mittler uses a magent to adjust it through his skin.  So cool.  BUT, we have to be careful as any MRI will re-program it and it can malfunction.  So all our MRI's must end in a visit to Dr. Mittler who will make sure Ryan's shunt is programmed properly. 


You see the ridge on his head?  That is one of the sutures.

Ahh. The end. :)

P.S.  As I finish this post, my child is crying out for me.  Thank God we live in a time when surgeons have the knowledge and tools to do what they do.  I'm coming Ryan.  I'm the luckiest mama in the world.

7.30.2012

10 surgeries and counting (part 1)

Our boys have been through many surgeries, most of which required general anesthesia.  All of which have a risk of infection, death, etc.  Ya know, all that good stuff that comes with surgeries.  The easiest way for me to document them all is to just list them.  I apologize in advance for this uninteresting format.

Aiden's surgeries to date:

November(ish) 2011 - PDA ligation

This involved an incision on his back through which the surgeon would locate and snip the PDA, which is a blood vessel that brings blood to the heart.  Full term infants also have PDAs, but they usually close on their own.  The problem with PDAs not closing is that because they bring blood to the heart, less blood goes to the lungs.  The biggest risk with this surgery besides the obvious, is vocal chord paralysis.  Apparently a nerve that is connected to the vocal chord lies right over the PDA.  In order to snip the PDA, the surgeon has to move this nerve out of way.  Imagine if you will, this beast of a surgeon with huge hands and bulging biceps, operating on a baby who is barely 3 pounds.  All went well, he recovered after a few days, and has a pretty cool scar to show for it.


After the PDA surgery - You can see his incision & staples here
December 2011 - shunt

We hoped Aiden's brain bleeds would reabsorb and not result in Hydrocephalus.  At this point Ryan was already diagnosed.  Unfortunately he didn't get away with it.  When his hydrocephalus developed he was still too little to be shunted.  Dr. Mittler, our neurosurgeon, really wanted Aiden to reach 2 kilo before he operated, but we had to do something because the pressure was just building on his brain, causing damage.  So Dr. Mittler opted to straight tap Aiden, which involved inserting a needle directly into the ventricles in his brain to extract some CSF.  This released some of the pressure on his brain, which also gave him relief.  Hydrocephalus, when not treated, not only results in brain damage, but also causes the patient to have killer headaches.  It was also affecting Aiden's ability to maintain his breathing and heart rate at a normal level.  Aiden was tapped this way twice before he finally got big enough for the shunt procedure.  Again, risk of infection, death, yada yada yada.

Dr. Mittler is a phenomenal surgeon and all went well.  Unfortunately, Aiden's body seemed to be rejecting the shunt tubing.  To this day we're not really sure what happened, but he developed some fluid around the tubing near his chest, which resulted in a huge bruise which basically obstructed the shunt.  Dr. Mittler didn't want to operate just yet, he wanted to wait and see.  So we were back to having Aiden tapped daily, only this time they were tapping him through his shunt device and not directly through his brain which is very, very dangerous.  Eventually the bruise went away, and the shunt began working correctly.

Ugh, I'm tired.

::I have a photo of Aiden after his shunt surgery, but I will not post it.  He really didn't react too well to the anesthesia this time, and the surgery was much more involved.  He didn't look like himself, and I don't think it's appropriate for this blog.::

January 2012 - laser surgery for ROP

Premature infants are at risk for ROP (retinopathy of prematurity) due to their need for breathing support.  While oxygen was allowing our children to survive, it was also causing abnormal blood vessel growth in their eyes.  Another risk factor for ROP is extremely low birth weight and hypoxia (oxygen deprivation).  Such abnormal growth can result in blindness.  (Fun fact:  Steve Wonder was a preemie and his blindness is a result of ROP.)  In short, the laser surgery killed off the abnormal vessels.  Had they been allowed to grow the way they were growing, they would have pulled on Aiden's retina, most likely resulting in detachment and blindness.  Most of the time this proceudre is successful and does preserve vision.   There may be some loss in peripheral vision and most children will require glasses.  Small price to pay.

At this point we see a pediatric opthamologist every 6 months.  Our next visit is in September.  It's all a wait and see game at this point.


Aiden had his ROP surgery the day of Ryan's discharge.  This is our first family pic, taken on that day (Jan 20, 2011)

April 2012 - shunt revision due to malfunction

At a certain point my mom mentioned she thought Aiden's head looked bigger.  Our pediatrician agreed.  This is one of the main things to look for with hydrocepahlus, as a sympton of shunt malfunction.  Some other symptoms are vomiting, extreme irritability, and sunsetting eyes (baby looks down all the time) - none of which Aiden had.  We went to see our neurosurgeon the Friday of Easter weekend, who checked his shunt and knew immediately that it had stopped working.  He told us we need to operate tomorrow.  We couldn't get on the OR schedule because of the holiday, so I was instructed to head to the ER the next morning at 5am, and Dr. Mittler would meet there.  We basically staged an emergency surgery.  Again, risk of infection, death, blah blah blah.  It turns out that Aiden's shunt was completely obstructed.  A piece of tissue begain growing into the tubing and blocked the flow of CSF.  He was in pain this whole time (from the pressure on his brain) and barely made a peep.  Let me tell you, my son is a warrior.  He woke up and needed a bit of oxygen, but you wouldn't even know he just had brain surgery.  Such a strong boy.  All he needed was some tylenol and he was golden. 


Minutes before he was taken back to the OR

April 2012 - bilateral inguinal hernia repair

All babies are at risk for hernias, but preemies are at an even higher risk.  This is true for a lot of things, simply due to the fact that they weren't given the chance to develop properly.  Aiden was discharged from the NICU with something called a hydrocele.  Basically he had fluid building up in his scrotum because the opening in his scrotum didn't properly close after his testciles descended.  Hydroceles can resolve on their own or result in a hernia, where the intestines get lodged in this opening.  Aiden's hydrocele did not resolve, so off to the children's hospital we went.  Two small incisions, some light anesthesia, a night int he hospital, and baby boy was fixed.  I swear, this kid knows the drill now.  Surgery, what surgery?


A few hours post-op.  He had an IV in his arm that they covered with a sock :)
May 2012 - tubes in his ears

Many infants get tubes placed in their ears in order to prevent ear infections, which can be caused by fluid build up.  Aiden got tubes because his cleft palate pretty much guarantees there will be fluid build up.  This time we didn't have to spend the night in the hospital.  It was a 15-minute procedure, and he was on his way home in no time. 


A little upset.  His ears were probably sore :(
Unfortunately, Aiden faces a few more surgeries.  His cleft palate will have to be repaired pretty soon, in order to preserve speech development.  Most celfts are repaired by the time baby is one.  We have some more time though, because Aiden has to make weight.  He has another 3-4 lbs to gain before any surgeon will perform the repair.  He will probably have two separate surgeries within the next year or so and then when he is around 7 years old and is getting his permanent teeth he will need dental work, because his cleft reaches his gum line.  He's got this though.  No worries.  He told me he isn't scared.

To be continued...

7.29.2012

birth story

Warning:  This is more of a what happened before and after story, as I was totally knocked out for A&R's actual birth.  Double warning:  It's uncensored and really, really long.

It all started on April 30th, 2011, when I took a pregnancy test and saw that magic word “Pregnant”.  I had been so used to seeing “Not Pregnant” that my heart literally jumped out of my throat.  We had been trying for nine months and I remember running down to the basement where Seamus was cooking (we had construction going on at the time so we were using the basement kitchen).  I showed him the pregnancy test and started crying immediately.  We hugged for what seemed like an eternity and I cried, because you know, that's what I do.  I was supposed to run a half marathon the next morning with my sister, but decided against it.  I knew I was only 4 weeks along so I didn’t want to risk anything happening to this tiny being growing inside of me.
The next two weeks went by without a hitch.  I had an ultrasound scheduled for my ninth week to date the pregnancy and meet my new OB.  At 6 weeks I experienced some bleeding.  We went in for an early u/s expecting to be told that I miscarried.  When my OB started the u/s he told me to relax and that it was likely that nothing was wrong.  The next words that came out of his mouth would change our lives forever.  He said, “Do you have a good heart?”  I said “yea, why?”  (Thinking, what the hell does my heart have to do with this?) He said, “Well, you’re having twins!”  I never laughed and cried so hard in my entire life. 
I immediately bought Dr. Luke’s book about carrying multiples.  I spent the next few days reading through the chapters and getting myself anxious.  I read all about pre-term labor and other complications that are common with multiple pregnancies.  At one point, Seamus told me to put the book down and stop making myself crazy.  So I put the book down and never turned back.  I spent the next few months taking it pretty easy.  I did a lot of lying down after work but I also did my fair share of tidying up after the construction going on in our house.  And I was seeing my OB every three weeks.
On September 12th, I was put on bed rest at home due to a shortening cervix.  I went to the hospital with Seamus for a routine growth scan and a cervical check.  When they measured my cervix it was at 1.2cm.  The cutoff for bed rest is 3cm.  I was monitored for contractions (I wasn’t having any) and my OB was called to come a check on me.  She checked my cervix again and gave me the bed rest talk.  I cried.   But mostly because I was nervous about not being able to work, and how we would afford our mortgage for the next 4 months, not because I was nervous about carrying to full term.  I convinced myself that I would be in bed until I was 38 weeks.
Exactly one week later we went in for another cervix check, and much to my surprise my cervix was no longer measurable.  The technician who measured it didn’t say anything at first.  She simply put the wand down and left the room.  I knew something was really wrong.  She came back with the doctor, who checked me again, and they immediately told me I was being admitted to Labor & Delivery.  While I was waiting for a bed, I heard them say I had a bulging bag.  I never heard this term before, but I knew what it meant.  Aiden's bag of waters was descending into my cervix.  Which meant my water could break at any minute.
I was admitted to triage and hooked up to a mag drip and IV antibiotics and three monitors – one for each baby and one for me.  I spent the next 24 hours there not able to eat or drink anything for fear that they would have to perform an emergency C-section.  I was contracting the whole time, every minute or two, but I didn’t feel the contractions.  A neonatologist came to my bedside and explained to me and my husband all the complications our children would face if they were born now, in a week, in two weeks, etc.  I felt like I was living a dream. 

For your entertainment, this was on day 3ish of my hospital stay.  I know, glamorous.
The next day I was moved to antepartum because I was no longer contracting.  Seamus went home and brought me my laptop, some magazines and books, a hairbrush, my toothbrush and anything else he thought I needed.  We were ready to live in the hospital for the next 3.5 months.  I wasn’t allowed to get up to go to the bathroom and the doctors were no longer checking my cervix for fear of breaking my water.  I was told to inform my nurse of any contractions, bleeding or discharge.  Seamus stayed with me every single night and went to work in the morning.  Five days later, I convinced him to go home and sleep in our bed.  He needed it.  He didn’t have work the next day so he would be able to sleep in.  He went home and I played on my computer.  I stumbled upon a Preemie support group and opened a post where everyone wrote about how their preemies are doing now.  It gave me so much hope.  I grew tired and went to sleep.
At 4:30am I awoke to some bleeding.  I immediately called my nurse who came with the resident on call.  She checked me with a speculum, and told me there is too much blood and she has to take me to L&D.  I asked her if I should call my husband.  She said yes.  I knew it was time.  When they moved me onto a stretcher, I looked over at my bed and saw the blood.  I said “Oh fuck!” when I saw how much there was.  As they wheeled me to L&D, I remember feeling very calm but a million thoughts were racing through my head.  I have no clue what they were.  The doctors performed an u/s to see the babies’ postioning, and the whole time I felt this urge to pee.  I knew it had to be the pressure of the babies on my cervix. 
I was moved to the OR and I remember it being so cold.  They threw me onto a cold, metal table and begain prepping me.  There were about 15 people in the room.  The anesthesiologist was so reassuring, he kept telling me not to worry, that they will take care of me.  I will never forget his face.  As they prepped me for surgery I made my mind slow down because I wanted to remember everything.  I wanted to remember that feeling of knowing that shit is going down, but not really being nervous about it.  Maybe I knew I was in good hands.  Or maybe my mind was just tricking me so that I wouldn't melt down.  I really felt like I was in a movie.  All I saw were these faces with masks on.  I couldn’t even recognize my own OB, they had to point him out.  I later found out that he made it to the hospital in 12 minutes.  Seconds before they put me under (there was no time for an epidural so they had to knock me out), I was told Seamus had made it to the hospital.  I was so relieved.  He wasn't allowed in the OR since I was knocked out.  But just knowing he was out there made it all okay.
I woke up in recovery sadder than I had ever been in my entire life. It was Sept. 25, 2011, and I just kept repeating to myself that today was my children’s birthday.  And instead of it being the happiest day of my life, it was the saddest.  At some point I asked if the kids were alive and Seamus told me the boys were ok.  He hadn’t seen them yet but they were alive.  Then the recovery nurse asked us what their names were.  Welcome to the world Aiden & Ryan Moloney.  You will do great things.
At some point Seamus left, maybe to eat or see the boys, I’m not sure, but my dad stayed with me.  I cried the entire time and he just held my hand.  I will never forget it.  I later found out that the bleeding was caused by a placental abruption, and that Aiden’s feet were hanging out of me by the time I was put on the operating table.  From the time I called my nurse, to the time the boys were born, only 45 minutes has passed.
         In many ways this isn’t a birth story at all, because I wasn’t awake for any part of the boys’ birth.  I often think about why this happened to us, and I try to understand the very difficult decision God made to put us in this situation.  After dissecting my story a million times and working through the anger that I feel about everything that happened, my short answer is this:  God put me in the hospital to save Aiden.  If I was at home when the bleeding started, we never would have gotten to the hospital in time, and we would’ve lost him, and possibly Ryan.  I thank God every day for making this decision for us.  Maybe this is true.  Maybe it isn't.  But it's something that I need to believe for my own sanity.

       I may never have a typical birth story.  A story where I get to nurse my newborn baby seconds after he comes out and take him home two days later.  It took me a long time to grieve that, and in some ways I still do.  I grieve the full term pregnancy that I thought I would have.  That naive state of mind where I imagined a perfect outcome.  You know, a part of me died that September day.  That girl who viewed pregnancy and child birth as this fairy tale where nothing would go wrong and my biggest choice was whether or not get an epidural.  I will never look at a pregnant woman or a newborn baby the same way again.  There will always be some envy.  And that is something I need to accept.  And I'm beginning to.   

      In spite of all these ugly feelings, I wouldn't trade my kids or my experience for anything.  Ok I lie...I would trade my experience for the health of my children.  But since that isn't possible, I make peace with the person I am today and the cards that I have been dealt.  I may be harder and a little rougher around the edges, but I'm a mom.  A mom who will take every breath, every ounce gained, every milestone reached - I will take them, and rejoice.  Because God is good.  And He gave us our babies.



7.28.2012

ryan's story (part I)

Ryan is our Baby B.  He's our little bonus baby.  Unexpected, but loved like no other.  We had such a tough time naming him.  I must've suggested 300 different names to Seamus, and nothing really fit.  Or was good enough.  It came down to Ryan and Paul.  We decided on Ryan because get this:  the day I was put on bedrest, was the day that Ryan Callahan became the captain of the NY Rangers.  So yes, my son is named after a hockey player.  Go figure.


Ry-guy (a nickname he's had pretty much since birth) followed his brother closely, being born only one minute after him, at 5:16am.  He also weighed 1 lb. 10oz. and I'm guessing was somewhere around 12-13 inches long.  Here is the first picture we took of him:



Birth day
Ryan was also intubated after birth, but only stayed on the vent for about 2 weeks.  His lungs improved quickly, but he had issues with his digestive system.  He wasn't able to tolerate breastmilk consistently until he was around 2 months old.  Before then, he got his nutrients via IV fluids.


Halloween - My first time holding Ryan


Seamus holding Ryan for the first time
 
5 weeks old - 2 lb 7 oz

When Ryan was one month old, and about 2 lbs, he had his first surgery.  He was diagnosed with hydrocephalus (also the result of a Grade III & IV brain bleed/IVH) much sooner than Aiden, and the pressure on his brain was just too great.  He was too little to be shunted, so his neurosugeon opted to insert a reservoir through which he would be able to tap Ryan's brain for CSF daily.  The purpose of this was to prevent further brain damage.  If you ever notice the bump on the right side of Ryan's head, that is his reservoir.  It is no longer used because he has a shunt, but it will most likely stay there until he decides he wants it removed. 


Nov 17th - first time wearing clothing
Ryan came off oxygen much sooner than Aiden did, and was able to start PO feeds.  He did so well his first time.  But then things went down hill.  You see, a full term baby is born with the suck-swallow-breathe reflex which allows him to feed.  Preemies have to learn it.  Instead of sucking-swallowing-breathing, Ryan would suck and just breathe.  Which made him choke.  There were two instances when Ryan choked while feeding, turned blue, and had to be bagged in order to start breathing again.  At this point, the neos thought it was a good idea to give him a little bit of a break.  They suspected it was Ryan's hydrocephalus that made it hard for him to learn how to eat.  We were asked to come in to meet with all the doctors, and we were told that Ryan had to be transfered to rehab facility that would teach him how to eat.  I broke down that day.  We were already in the hospital for so long, and now they were telling me that Ryan had one more stop before he could go home.  Needless to say, I was not happy. 

Dec 9th - 4 lb 12 oz - no more oxygen!


Dec 12th - first bottle
Eventually we agreed it would the best thing for him and put in for the transfer which we were told would take a few weeks.  The day before Ryan was accepted to St. Mary's, a new neo was brought on to his case, and agreed to let him try the bottle again.  And he did it.  He ate his bottle and didn't choke.  And didn't need St. Mary's.  It took another 2ish weeks for him to come home. 

5 lb 3 oz - big boy crib!
Ryan has had 4 surgeries to date.  His hydrocephalus is more severe than Aiden's, and we were told immediately that he would need more intervention than Aiden in order to hit his milestones.  Ryan had a rough start in life and his struggles do not end in the NICU.  Although he will need to work extremely hard to do even the simplest things, I have no doubt that he can accomplish anything. 


I look at my babies every day and my heart explodes with love.  I know that we were meant to have these sweet boys.  The last 10 months have not been easy, but we thank God every day for the blessings He has graced us with.  We vow to do whatever it takes to make sure that they are happy, healthy and loved unconditionally.




Ryan today - around 15 lbs.






7.27.2012

aiden's story (part I)

We always knew we would have an Aiden.  We had his name picked out probably 7 years ago.  We just didn't know he would have a partner in crime. 

Aiden is our Baby A.  Ultimately, he is the reason they were delivered.  At 4:30am on Sept. 25th, 2011, Aiden's placenta abrupted.  There was too much blood, and if they didn't operate, we would have lost them.  Thankfully, I was already in the hospital.  

Aiden was born at 5:15am weighing 1 lb. 10 oz.  He was only 25 weeks 2 days gestational age.  Which means I was only 5 1/2 months pregnant when I delivered him.  I can't tell you any more details because I was knocked out.  This is the first picture we took of him:

Birth day

He looked like a salamander.  His fingers and toes were so long and his skin was transparent.  They asked if I wanted to touch him.  I didn't.  I was afraid to break him.  He was intubated, which means a machine (a vent) was breathing for him and his eyes were still sealed shut.  He was bigger than I thought he would be, which was a relief.  

On Day 2 of his life, they were able to take the breathing tube out because he was doing well.  That didn't last very long.  He was re-intubated and that night, he had his first of many blood transfusions.  If you ever wonder if you should donate blood, you should.  Without countless blood transfusions, Aiden would not be here today.  
3 weeks old
 Aiden spent a total of 139 days in the NICU.  Most of those days were spent on some sort of breathing and feeding support.  He spent 8 weeks on a vent, which means he wasn't able to breathe on his own at all.  Once he was off the vent, he would have episodes where he would forget to breathe.  On his worst days, he was bagged in order to begin breathing again.  By the time he was 8 months old he had endured 6 surgeries, and there are more in his future.  He battled an infection that lasted two weeks.  He had pneumonia and a collapsed lung more times than I could count.  There were days when I wasn't sure if we would get to take him home.   

Nov 17, 2011 - The first time I held him
3 months old - 5 lb 4 oz
At 9 weeks old we were told that he had a cleft palate.  This interfered with him being able to feed from a bottle, because his suck was ineffective.  They didn't actually start his PO feeds (oral feeds) until after his due date, which is very late for preemies.  His last few weeks in the hospital were focused on getting him to take all his feeds orally, while maintaining his breathing and heart rate.  He finally came off oxygen a few days before he was discharged and on his last day in the hospital, we were told that he had failed the newborn hearing screen.   


Feb 5, 2011 - No more feeding tube!
Feb 8, 2011 - No more oxygen!
Aiden's main diagnosis is Hydrocephalus.  It it directly related to his prematurity.  Babies who are born before 30 weeks gestation have a high risk of developing an IVH, which is a brain bleed.  Aiden developed a bilateral Grade III & IV brain bleed, which are the most severe.  As a result he developed a blood clot in the ventricles of his brain, preventing the CSF (cerebral spinal fluid) from circulating back through his spine.  Ultimately, this causes pressure on the brain resulting in brain damage.  In addition, his MRI showed evidence of PVL (periventricular leukomalacia) which is another form of brain damage.

Aiden today - around 15 lbs.
Aiden spent the first 5 months of his life in the hospital.  He faced many challenges to get where he is today and faces many more ahead.  But he is fighter and he shows us that everyday.  He has made me more proud than I could ever imagine and he is my hero. 


7.26.2012

it doesn't define us

Hydrocephalus.

A word that, 10 months ago, meant nothing to me.  Today, I think about this word a hundred times a day. 

While I will raise my children to know that this condition doesn't define them, I used it in the title of my blog for a very important reason.  I want others to find us.  At a time when I had no clue what the future held for us, I searched and searched for a glimpse of what's it's like to have a child with Hydrocephalus, but I found next to nothing.

So, I'm taking a shot at this whole blogging thing in hopes that someone will find us and, it turn, find what I was looking for.  Andplusalso, I need to start writing things down for my kids.  Because I fear my memory will fail me.  As it already has in the last few months.






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