Diagnosis Road: Ahmond's Story (hypotonia, seizures, non-verbal, spd)

The diagnosed: Ahmond is 6 years old

Those who love and care for him: Raschard, Jenn and big sister Addie

Name the diagnosis and tell us as much about the diagnosis story as you wish.

When I was pregnant, I had Polyhydramnios (excess amniotic fluid) and they told me that he may not have a stomach or might have esophageal atresia judging by the ultrasounds. But then he was born with all of his organs they were just like, oh ok, he's fine.

As a mom I knew differently. He was lifeless, very limp and he looked right through us. We took him to the same pediatrician until he was 6 months old, NOTHING. Even after knowing my pregnancy history and looking at him. 

We took him to another pediatrician who had great ideas, but never did anything with those ideas other than get us to Birth to Three (an early intervention program) which I'm extremely thankful for! Finally, we got him in with a different pediatrician, but honestly I've had to do things on my own. I got him in with a neurologist myself and I transferred him to Cincinnati Children's neurology department after begging his pediatrician to transfer us. 

Thank God for Cincinnati Children's. They have gone above and beyond with Ahmond and our family. The only doctors who seem to pay attention to us are at Cincinnati Children's. His neurologist has made referrals to a dental specialist, orthopedic department, speech pathology, and cerebral palsy clinic-- all there in the hospital.

I felt helpless in the beginning, but I just kept pushing for him. He had testing denied in the past so I wrote our governor and told him, "I'm a nurse, my husband is a law enforcement officer, we pay for insurance, we both serve the public and you're telling me that I can't have testing approved that could aide in the care of my son?" That week I heard back from Governor Tomblin’s office. They sent me papers to sign and made the West Virginia Commissioner of Insurance approve his testing!

Ahmond went without any diagnosis until he was 1 year old, which was still only hypotonia (low muscle tone) and doesn't explain any of the other delays that Ahmond has. He was diagnosed with epileptic seizures at age 5, although he had been seeing a neurologist since 9 months of age. 

Ahmond did not sleep through the night until he was about 5 years old; he will still sometimes wake up in the middle of the night, but he's not fussy. He has sensory processing disorder (spd) and while he does make several sounds and will hum along to a song or tune, he is nonverbal. 

He doesn't crawl, walk, or stand, nor is he is able to chew. He can swallow liquids and solids by mouth but they still don't know why he can't chew. He has a tilt wheelchair and a wheelchair that doesn't tilt. His tilt chair is more of a leisurely chair and the other chair with larger wheels is to try and get him to self-propel. He has to be strapped in by a lap belt and chest harness to keep him from falling out. He has a walker at home and he wears AFOs to keep his feet lined out, along with knee immobilizers to keep his knees from buckling.

Ahmond has received occupational therapy, physical therapy, speech therapy, and vision therapy since he was about 9 months old. Along with MRIs and EEGs, he has gone through multiple different genetic testings and some of the results were so new that they don't even know what they mean yet. 

How does it affect your relationships? 

I know God blessed our family with Ahmond because He knew we would take care of and love him more than anyone else ever could. I'm not saying it's easy by any means, but we work together as a family to make sure all of his needs are met. I had to quit working a full time job because Ahmond was very sick through the first few years of his life. I couldn't ask an employer to let me call in as many days as I ended up needing off to get him better. 

I will say though that my employer has been great and I still work one day a week for the same doctor. My husband's employer has been great as well. 

What is the hardest part? 

One of the hardest parts for me is that Ahmond cannot talk. I would love for him to be able to tell me what he's thinking, what's wrong if he's upset, what he would like to eat or drink, etc. We have learned to judge what he needs by the tone of his cries or screams.

What is an unexpectedly good part? 

With all that being said, for the most part he is the happiest kid ever! They love him to pieces at school. He goes to school full-time and we're more than blessed with the people there who love him like he's their own.  His principal takes him to the playground and puts him on her lap to swing! His teacher and aides send me pictures and videos of him throughout the day, playing and having fun. 

When people try to comfort you, what is the least comforting thing they say (even though it may come from a good, kind place)?

"Everything will be ok." 

"He'll be walking and talking before you know it."

Do I want him to be ok? Do I want him to walk and talk? Yes!!! I'm sure it's supposed to be comforting, but it's not.

We live it everyday and these phrases just go in one ear and out the other, the only thing we keep is the love and kindness they're meant to give us. We appreciate people trying to encourage us, but what we'd rather hear is: 

"Wow, he has come so far in the last six months or year."

I think what I like most is when people engage in a conversation with me about Ahmond and try to learn about him rather than trying to pacify me or us. After all, he is my child, just like Addie or any other child to any other parent. I love to hear people comment on his progress because it lets me know that not only we notice, but others do as well.

Are there any places you just cannot go and do you have any advice for how the world can be more inclusive? 

Anywhere that requires him to be silent!! You never know when he will scream or just start being loud. Obviously, this doesn't bother our family or anyone who knows him, but if it's somewhere that requires "quiet" we can't go. People are usually caught off guard by his outbursts and arm/leg flapping. 

What do you want other people to know about parenting this diagnosis?

For the most part he's a happy boy and I love him more than life. I'm not gonna lie I do have a breakdown and cry probably every 6 months or so, just letting all my stress out and that's ok. It's just very overwhelming giving 24 hour/around the clock care to my baby boy and not having answers. 

It's not the taking care of him part that makes me cry. It's me wanting to know everything I can to improve his daily routine and help him function at maximum capability. But here's the thing...doctors can't even tell me a lot of things for certain...I have to research and learn them on my own. 

More than anything I guess I just hope that I can give him everything he needs and wants. Through all of this I can't leave out a few people that make our world go 'round! My husband, Raschard. Ahmond has the best daddy in the world..like hands down could not ask for better!! Addie is the best big sister ever. She's always been his protector; she can calm him when no one else can, their bond is unbreakable. And my mom...she is certainly my rock. Other than his teachers and aides at school, my mom is the only person I trust to keep Ahmond and that says a lot! 

Diagnosis Road: Cameron's Story (undiagnosed--growth and bone delay/disorder, speech delay)

This story is especially near to my heart because it is about a child who is undiagnosed and yet very obviously has something going on.  I know what this is like and it can be maddening. There are days that I think to myself, "I feel like I could deal with anything as long as I know what it is." 

The (un)diagnosed: Cameron, 2

The ones that love and care for him: Dustin and Carrie, his parents

Name the diagnosis

Unspecified growth delay/disorder, widened metaphyseal bones, severe speech delay, possible anxiety issues

Please tell us as much of the diagnosis story as you wish

It all started at one of our ultrasounds. The ultrasound technician mentioned something about one of the long bones looking shorter than normal (long bones are what they nickname the top bones in your legs and arms). We didn’t think anything of it at the time, and they told us not to worry.

He was breech and I had really low fluid levels so we had a planned C-Section. During the CS, I heard Dr. Ratcliff (who has been delivering babies for 40+ years) say “hm, that’s interesting.” Let me tell you… you do NOT want a man who has been delivering babies longer than you have been alive to think something about your insides are interesting! As it turns out, I have only half of a uterus. This is apparently called a unicornuate uterus. So, when Cameron was born and he was pretty short, they said it was probably growth restriction from being so cramped in my efficiency sized womb. He was only 18 ¾ inches at birth. We didn’t dwell on it and assumed he would catch up.

Until he was 5 weeks old. 

He was taking a nap on his grandma’s chest, and I looked over at him and noticed the top part of his ear was very swollen. We took him to the ER and the doctors were confused. They said that it looked like cauliflower ear, which is what boxers/wrestlers get from getting hit in the head to hard and often. They made an appointment the very next morning for Dr. Touma. We had no clue how this could have happened, but thought maybe he jerked in his sleep and hit his head on his crib, although they said he would have had to do it really hard to do that.

Dr. Touma (by the way, he and his staff are ANGELS) was equally confused. He had not seen this in a child so young, ever. He took a syringe and drained the fluid from the top of his ear and it was completely clear. Again, this was confusing. He said if it was from trauma it should be red or at least pink, from blood. He said it was likely a birth defect, and that the cartilage in his ear did not close together all the way. They put a compression bandage on his ear to help with healing, and we went on our way again.

Until he was 8 weeks old.

His other ear did the exact same thing. Clear fluid this time too. Dr. Touma decided to do a surgical incision this time to see if it would help this ear heal better. The scar tissue from both ears made his ears form misshaped. Dr. Touma referred us to Cincinnati Children’s to an ear specialist. We saw the ear specialist, and he said that his ears looked fine, and confirmed that his cartilage likely did not close together when forming, and that fluid leaked in through the gap. At this point, he was around 6 months old or so, and had not really “caught up” in length. He was growing at a steady rate, but always about 5 – 10^th percentile for height. 

Did you know that there are THOUSANDS of types of dwarfism? Yea, I didn't either. His doctor at Cabell thought that some of his symptoms looked like they could match, and so he had a scan of every bone in his body (holding a screaming 6 month old down for x-rays is NOT fun). She promised us she would let us know as soon as possible, but I did not really think we would hear anything for a while. I am ashamed that I was petrified of that diagnosis. I feel like people with dwarfism are one of the last remaining groups that it is socially acceptable to make fun of. I still remember the knot in my stomach when the doctor called around an hour later. Cam did NOT have Achondroplasia (the most common form of dwarfism). I am ashamed at how relieved I was. One form down, thousands to go…

His doctor noticed that his metaphyseal bones (the ends of the bones) were wider than normal and that his long bones were shorter than normal (remember how we conveniently forgot/repressed they ever told us this?). We were referred back to Cincinnati Children’s to a geneticist and growth/bone/cartilage specialist. He had more tests, more scans, more blood draws. Eventually, when he was maybe 9-10 months old, we went back for the results. The geneticist could not send the blood anywhere because he didn’t know what to have them check for. He was the head of the genetics department at one of the best children’s hospitals in the country, and even he was confused by Cameron. He has some symptoms that are weird, but not enough to place him anywhere specific or with any syndrome. He said we just needed to wait and see if anything else popped up, and check back when he was older.

The growth/bone specialist said that he probably did not have dwarfism, but that he would probably never be tall, or even “average” height. He said he would probably not be any taller than 5’5 (his dad is 6’2 and I myself and 5’6, so we are fairly tall).

Besides being a little short, he developed normally. He walked a day after his first birthday, and hit all his developmental milestones on time. So, we just went on with life and hoped one day we would find out more information about what makes Cam unique.

Until he was about 18 months old. 

At 18 months old, he was not really talking. We waited until his 2-year well visit, and he still wasn’t really saying anything other than ma ma, da da, and ahh-heee (horsey). Because of insurance/referral issues, we did not get started with speech therapy until August of this year, when he was 2 years and 8 months old. He was diagnosed with a severe speech delay, with a probable language disorder (not yet officially diagnosed).

We also had a behavioral/developmental evaluation done on him. He has always had some anxiety issues, and we/his doctor were worried that the lack of communication/comprehension either pointed to a developmental delay or something on the Autism spectrum. He gets frustrated VERY easily, is very uneasy around new people, and doesn’t like loud noises. He also likes to play by himself and it takes him quite a while to get comfortable with people. His psychiatrist did not really think he is on the Autism spectrum, but noted that he does not like to try new things because of frustration/anxiety, and said this could be a possible consequence of the speech disorder.

SO, to recap – Cam is short, his wide bones, short “long” bones, severe speech delay, and possible anxiety/behavioral issues. He has lots of little symptoms but very few official diagnoses.

How does it affect your relationships? 

Dustin and I have been together for close to 10 years and we are a great team in crisis. We pull together and pull each other up from negativity/worry about Cam’s future. Our families are amazing, understanding, and loving. They realize he has different challenges and needs, and they love him so deeply. His daycare staff is amazing and he feels comfortable, safe, and loved there. We are very lucky for the people close to us in life.

What is the hardest part? 

I worry about kids picking on him when he is older--for his ears, his height, his possible developmental challenges. I obsess over his height. Each month I track his height in pencil behind our door, and pray that he has grown even a millimeter.

The very worst part is the frustration on his part and ours from a lack of communication. When I hear children a year younger than him speaking simple sentences when my boy struggles to ask for more breakfast, it breaks my heart. He gets so upset when we do not understand what he wants, and we get upset when he is too tired/frustrated/cranky to try to communicate. Speech therapy has been such a help. 

He still isn’t really speaking much, but we have had some success with sign language. He can tell us “more” and can indicate about 6 different nursery rhymes with signs. He can say a few more words like blow, woah, and yea. His comprehension is improving (I asked him today if he wanted to leave the park, he shook his head no… I nearly cried). He is progressing at a snail’s pace, but it is EVERYTHING to us. 

What is an unexpectedly good part?

I feel like we really FEEL every accomplishment and that it means more to us than it would have if he had developed typically. Every inch he grows, every new sign he learns (even if I am so, so, so tired of singing row, row, row your boat) is a huge, amazing, wonderful moment in our lives. I think because he cannot communicate very well, he has pretty amazing emotional maturity. Even now, I am getting a little emotional writing this and crying a little. Cam crawled up beside me on the bed and laid his head on my shoulder.

Are there certain places you just can’t go and do you have any advice for how the world can be more inclusive? 

Oh Lord, yes. Going out to restaurants is a huge gamble. Because I must have been a horrible person in a past life, his default response to frustration is to emit THE most un-ignorable high-pitched scream on planet earth. If we are at a restaurant and he can’t tell us what he wants to eat or drink, or if he is HANGRY and wants to tell us he is hungry now, or if his tummy hurts, he can’t really tell us and his default is that high-pitched scream.  All of the people sometimes make him anxious. 

You know how little old ladies love to talk to cute toddlers? High-pitched scream to their face. 

Waiters singing happy birthday to the kid in the next booth? High pitched scream until they stop. 

So, I usually take him to the bathroom to calm down. It breaks my heart a little that to most people, it looks like I am taking a bratty toddler to the bathroom to discipline him, when in reality I am taking my frustrated and anxious little guy to let him calm down in peace.

What do you want others to know about parenting/living with this diagnosis? 

I have been around educated, thoughtful, caring people who consider themselves to be good people. People I respect and value. People who, for whatever reason, think it is okay to say midget or to stare and giggle when they see a dwarf.

I worry SO MUCH about his future. I worry kids will make fun of his ears, his short arms, his short stature. I worry he will never learn to talk or that he will have developmental delays his whole life. I worry that he will have trouble making friends or real issues with anxiety.

Still, I love him exactly as he is and am overwhelmed by how amazing I think he is. For all of his challenges and his uniqueness, he is an amazing little boy. He is SO funny and loves to make people close to him laugh. He gives the best hugs in the world (I am biased of course) and takes up every single square inch of my heart.

Diagnosis Road: RaeLee's story (23 week micro preemie)

I'm adding an intro to this one because we're doing it a little differently. Instead of answering questions, RaeLee's mom has decided to share her full story, written out!  

Ginger (mom) and he family are the Tri-State Ambassador Family for the March of Dimes, 2017! This includes many speaking engagements this year and participating in the March For Babies Walk in Ashland, KY on April 22, 2017. Click on that link for more information and how to join the event and/or donate. As their events get closer, I'll share them on the Come What May Facebook page. 

Hello,

My name is Ginger Sweat. For 15 years my husband and I tried to have a child of our own.  I was told at age 16 that I would probably never be able to conceive.  In 2011 we decided it was time to go and see a fertility specialist.  He began running tests and monitoring us.  I began taking some medications to help move things along and shortly after we began, we found out we were expecting.  We could not have been more excited.  Our heads were filled with all sorts of thoughts of what was to come.  One thing I never even considered was having a premature baby. Having our little girl as early as 23 weeks gestation never crossed either of our minds.

I did everything by the book during my pregnancy. I followed every doctors' order, I steered clear of any questionable foods, cut caffeine completely out, and took my prenatal vitamin everyday.  I never missed a doctor appointment and never hesitated to call in if I felt uneasy about anything.  In fact, at my last appointment--two days before going into labor--I had an exam, ekg, and consultation. The doctor sent us away feeling overjoyed with what he called our “perfect pregnancy.”  The next day while at work I began having contractions.  Everyone assured me that they were just Braxton Hicks and everything was fine. At first I thought I was just overreacting, but after some reading I realized what I was feeling didn’t seem to fit the definition.  These contractions were very painful and were coming steadily, every few minutes.  A coworker and trusted friend eventually convinced me that I needed to go to the hospital.

After a panicky ride to the hospital with my husband, we were quickly taken into a triage room where they did an exam. Contrary to the sinking feeling in my stomach, I quietly prayed that they would laugh, pat me on the back, tell me I just needed to toughen up and send us on our way. I couldn’t have been more wrong.  I heard the words “dilated to 4” and immediately felt as though I was free-falling into oblivion.  All I could think of was how early it was and how much I loved my baby.  We had just found out that she was a girl and now we were on the brink of losing her.

After an agonizing hour in the triage room, we were put into a room and I began to receive magnesium. The hope was that the contractions would be stopped.  Even with my body screaming that something was terribly wrong, I was still able to delude myself into believing that this was some sort of magical cure and Jeremy and I would be back home before long.  After the second bag of magnesium I was able to get the courage to ask when I would start to feel the contractions stopping. Immediately I could see it in their faces. The words that followed were just a formality.  The nurse tearfully advised me that magnesium would work for some women and not others.  I needed to hang on long enough to get 2 rounds of steroids for the baby's very immature lungs, and that I would be there until I delivered. Be that in the next few hours, or in the next three months.

Now it was time for the neonatologist to come in and talk with us. As the situation became clearer to Jeremy and me, we decided to ask him to be straight-forward in explaining our circumstances. This was definitely not a time where we wanted things to be sugar coated. Within a few sentences we had a vastly different understanding about how our baby was going to come into this world. He began to explain how extremely immature her lungs were, and that this would by far be the biggest challenge.

He made sure we understood that upon birth she would need immediate life support. 

Next was an explanation of the unfortunate reality that the equipment needed to treat our daughter is simply not made small enough to accommodate such a tiny baby, and that if we decided to have the doctors attempt to save her life, they could actually do irreparable damage.  We were also told to expect her to have a brain bleed. Obviously this type of information would shake any expectant parents to their core, without the terrible details that followed. A brain bleed could cause her to never walk or talk. She could be severely physically and developmentally impaired. The nature of her extreme prematurity could leave her blind or deaf. She may have to have extremities or even whole limbs amputated.  She may be in a wheelchair or even bedridden for life. Needless to say, the chances of her experiencing a “normal” life should not be expected. Then came a long discussion on the possibilities of her having cerebral palsy, autism, or any number of lifelong debilitating illnesses.  

Without hesitation, my response came pouring out.  I would be her eyes, her ears, her legs, her arms, her hands, her mouth, anything she needed.  I would be that if he would just try to save her.  

God gave her to me and brought her into this world for a reason and it is meant to be. Being an absolute professional, he calmly asked one last time if we wanted to use all lifesaving options. We again said yes. 

On 12/15/2012 

our little RaeLee Elyse rushed into this world at a staggering 12 inches long and weighing 1lb 4oz.  

The circumstances of her birth would be traumatic for both of us.  I delivered her foot breech vaginally.   During delivery my cervix closed on her neck. Despite the best efforts of myself and the doctor, my cervix had to be cut twice to get her out. All of the pulling and tugging caused bruising so bad that it was unsure if she was getting circulation to any of her extremities.   Her neck was also cut during the procedure causing her to need three sutures. This was all a blur to me while it was happening. The only thing I can remember during labor were passing images of all the dreams, hopes, and aspirations I had crashing down.  I wasn’t even sure our baby had made it through the delivery.  I noticed all the nurses had such big tears running down their faces.  I just couldn’t imagine they would be crying like that if she had lived.  It was in this moment of absolute despair that I heard the doctor ask if we wanted to see her.  They quickly brought her over and I said “I love you RaeLee” as loud as I could muster.  At that exact moment she opened one beautiful blue eye and looked right at me.  It was love at first sight.  From that moment on all I could focus on was her.  I had never wanted anything so badly in all my life.

We spent 116 days in the NICU.  

We have met so many wonderful people along this crazy journey.  I know that God put us on this path for a reason.  I believe that it is my duty to pass on the information that I have learned through my daughter.  She has truly defied so many odds and has taught me not to give up, even when medical professionals would.  

I also longed for someone who had been through similar circumstances to share with.  While going through this rollercoaster so many people said that they “understood,” only I knew they really did not.  No one I knew, family or otherwise, had ever had a 1lb. 4oz. baby who required life support to take her first breath. No one I knew had a baby so medically fragile that they were unable to hold them for over a month.

There are so many things I will never forget from the nicu.  Our nurses bonded with us so intensely.  I love them like my own family.  They made every milestone, no matter how small, seem huge because it was to us.  

The first time I was able to hold her was so amazing.  

I was afraid to ask and had waited so long.  My timid mom walked right up to a nurse and asked when I would be able to hold her.  They were there within 10 minutes and had her out and on my chest.  All of her firsts- her first bottle, her first big girl bath in a tub, and her first diaper change.  Most of all, I think the day that she was moved into a crib from an isolet was the best.  I was having a particularly rough day-- we were in the process of moving into a new home which we had purchased at the beginning of the pregnancy and had been tremendously delayed due to her premature birth.  The nurses put up signs and they didn’t tell me.  It was huge a surprise when I walked in.  Gone were the days of worrying that ventilator would come flying out of her mouth and onto the floor setting off all the alarms and causing her to desaturate and not breathe.  All I could think about was how I would be able to hold her whenever I wanted.  I would no longer have to ask permission.   That is when it all hit me.  We were going to make it home, we were going to be able to “normally” parent our baby and shower her with endless love. 

A few other areas where I may be able to help families, aside from the medical issues micros deal with inside the hospital, are some of the issues they face following discharge and the transition home.  I felt that it was vital to get early intervention (called Birth to Three in WV).  At her birth we were told that RaeLee may never walk or be mobile, so it was the first thing we worked on.  We had a Birth To Three team member in our home the day after discharge and Physical Therapy started that week.  

She did everything delayed and it wasn’t until she turned 1 year old that she could even sit up unassisted for mere seconds.  The day after her birthday I asked for a speech consultation.  I thought we were progressing so well, but in actuality we were severely behind with food and speech.  I thought I was doing what was best for her with making her homemade purees and starting her on oatmeal.  After our speech evaluation I learned that RaeLee had sensory processing issues that were exacerbated by her high arched palate, which was caused from being ventilated for so long.  

We found out very quickly that she could understand everything; she just could not express it.  She was unable to eat certain textures that we still work on to this day, such as rice and pasta.  She has a very sensitive gag reflex so we dealt with lots of “getting sick.”  We were able to work through the skin sensory issues with brushing techniques and the food issues are so much better, but still a work in progress.  To this day, she needs to drink carnation instant breakfast at least twice a day for added calories as she is still extremely small, weighing in at 20lbs at 3 years old.  This has also given us the diagnosis of “failure to thrive.” However, she is the definition of thriving considering her beginning.   

These things, along with her weak immune system and lungs, are the reason we have done medical lockdown for the last 3 RSV/flu seasons and the reason we have a preschool teacher come to our home instead of sending her to a classroom.  We fought hard to get her synagis (a shot to help lessen the effects of RSV if she caught it) for not only the first year, but the second year home as well.

We have experienced about all the therapy there is out there.  RaeLee has been and is still receiving speech/feeding/sensory therapy, physical therapy, occupational therapy and developmental therapy.  It is suspected that she has sensory processing disorder, ADD, ADHD, hyperactivity, and along with her speech delay she also has apraxia. 

I also can offer the experience of having a term pregnancy after a micro.  Just 2 months into our 4 month nicu stay we found out we were expecting again.  We were completely surprised.  I did have lots of monitoring, cervical lengths, ultrasounds, ekgs, and progesterone shots, but did make it to term with the help of a high risk team. We just figured it would take help if we ever considered a second child.  If it were left up to me I probably would not have tried out of fear of another preterm birth.  God had other plans and He knew better than me.  

My girls are 10 months apart.  

They are best friends and help each other out more than I can explain.

Things that I think all nicu parents/guardians should know:

*There is help out there.  If you feel overwhelmed it is ok to find someone to talk to. Whether it be a professional or simply a mentor/friend who has experienced similar situations.  There should be no shame in admitting you have PTSD/Anxiety.  I have both and have learned how to manage it and even turn it into positivity.

*If your child needs help developmentally, physically, or emotionally, there is help for them as well.  Get a head start on any concerns. Early intervention can only help; it will not hinder your child.

*Don’t be afraid to ask questions.  Whether in the nicu or outside, ask questions.

*Keep a journal, one day you or your child will want to see how far they have come.

*Always do what is best for you and your child, what works for one may not work for others.

*Always always always trust your instincts.  You are your child's advocate.  You must be your child's voice. 

*Your child is special and always will be, look how hard they had to fight to be here.  Never forget that, not all parents are so blessed.  Some only walk away with memories. 

*Special children are given to special people!

Some examples of resources/blogs/sites that Ginger found helpful are below:

Graham's Foundation: Supporting Parents of Preemies

The Tiny Footprints Project (NICU photography)

The Anxiety I Don't Talk About as a Special Needs Parent (The Mighty)

Skin to Skin Contact

NICU Journey Wishes - A Parent's Perspective

Care.com Support for Preemies With Learning Delays

There is also an app available called MYPREEMIE that offers emotional, intellectual, and practical help to parents on their smart phone or tablet.

There are lots of Facebook groups available, too.  Examples:
Tiny Miracles - 23 Weekers or Earlier
24 Week Preemies
Micro Preemie Support Network
NICU PTSD Support Group
Micro Preemie Moms