Post-surgery update

Sorry for the long delay in an updated post. X has been recovering from his surgery and getting back into his therapy routines. He's needed extra one on one attention and snuggles. That's perfectly fine with me. :) I love my X snuggles!

How is he doing post-surgery? Overall, he's doing REALLY well! He's stronger and making more progress than he has in a long, long time. It's a little strange to see a symmetrical little tummy after not ever seeing one for his entire life leading up to the surgery. It's strange to see a scar where there wasn't one before. The surgery was still worth it, though. 

At this moment, we're still working through some anxiety that's left over from the surgery and time in the hospital. He struggled with anxiety when he first came home from the NICU at 3 months old. We were expecting something similar again after surgery, but nothing could have prepared us for how severe it actually was. 

This time, his anxiety was severe. REALLY severe. The first few days he was home after surgery, simple things like his sock falling off during play would cause him to cry and shake for several minutes. He would be completely inconsolable during that period. 

To see your child be in intense pain - whether physical or emotional - and having very limited things you can do to soothe them, comfort them, and make it better is heartbreaking. There was more than one occasion when all I could do was hold X close and whisper to him that we were here until he calmed down again. 

We've learned a lot to be able to help him through physical pain. We know what medications to give, when to use heat or cold, positioning, stretches, etc that will help relieve the pain he feels. It's always sad to see him hurting and I often tear up right along with him. The emotional pain, however, is something we haven't had much experience with. We don't have the same tools to be able to help him...at least not yet. 

More than anything in the world, I wish I could spare X all the pain he deals with. He rarely shows how much discomfort he's actually in. Sometimes we don't even realize it until something changes that makes us look back on past events and realize that he MUST have been uncomfortable. For the most part, X is just his normal, happy self. So when he does hit a point where something hurts enough to make him cry, it's usually pretty severe. The crying is usually sobs mixed with screams. We often cry with him; especially about emotional pain when we're so unprepared to help him. 

Hopefully this week, we'll have more ways to help him. X will be going to his first therapy appointment. Due to X's age and limited physical abilities, I don't know how much a therapist can do even in play therapy to help him with his anxiety. Still, I'm hopeful that they can help US learn more about how to better help X through emotionally painful situations. It will be an interesting and educational opportunity for all of us. I'll update again after our appointment. 

It is in your moments of decision that your destiny is shaped. - Tony Robbins

This doesn't happen often, but every once in a while, I have a sad moment. Today...yeah, I had a sad moment. It's not often that I feel this way because the truth is our family has been blessed beyond measure to have X with us. When you spend 3 months on a nearly daily basis watching your child walk all the way to death's door and wonder if they'll come back to you or not, you don't take your child for granted. Actually, you don't take anything for granted anymore. 

Then these sad moments hit and I feel selfish for having them. Honestly, what do I have to be sad about? X is alive. He's healthy. He's exceeding expectations. He's making gains on a regular basis. He's happy. So why am I sad? 

Maybe it's the stares from other people. I'm sure they don't mean to express pity, but sometimes that's what shows on their face and in their eyes. Pity that our child is different. We know he is...but that isn't what we see. 

Maybe it's the huge stack of paperwork I still need to do. Truth be told, the paperwork never ends and sometimes I just don't have the mental energy to deal with another form to fill out.

Maybe it's seeing X come home from the hospital looking like he's been starved because he felt so bad he couldn't eat for several days. To see your child's ribs so clearly defined that they look like nothing more than a skeleton is sad. Yet, that's what he looked like after surgery. He's slowly regaining weight, and his ribs no longer poke out...but that's not an image you quickly forget. 

Maybe it's a culmination of months and months of very little sleep. In order for X to keep his weight up enough, he has to be fed every 4 hours around the clock. He has had to be fed around the clock his entire life. I don't mind taking care of him because that's what he needs. Yet some days the exhaustion hits harder than others and everything makes me a teary-eyed. 

Maybe it's knowing the hell my baby has already been through in only 20 months of life...and knowing that in order for him to have the best quality of life in the long run, I have to send him off to surgery again in just a few more weeks. That decision never gets easier. Handing him over to surgeons never gets easier. It actually gets harder as he gets older. 

Maybe it's knowing that the decision to proceed with surgeries he needs will cause him to experience weeks of high levels of anxiety and PTSD-type symptoms...and also knowing that there's very little we can do as his parents to comfort him. We can be here and hold him and cry with him...but we can't fix it no matter how much we want to. 

Maybe it's months at a time of remaining home-bound to protect X from all the bad respiratory viruses that would easily hospitalize him for weeks or months. For about 9 months out of the year, X and I go no where except doctor's visits. We stay home together. I do love spending that time with him, but after 9 straight months of only seeing the inside of our home, we both long to get out and just have a normal life. 

Maybe it's knowing that because of things outside of X's control, there WILL be people who stare, point, laugh and tease him. It's just a matter of time. It's incredibly hard to have to already be thinking of ways to explain to your child that some people just don't know better...that they're afraid of what they don't understand...that he's not the one with the problem...and knowing that no matter what I say to him, his feelings and his heart will still be hurt more times than I'll be able to ever count. I can't prevent it, I can't ease the blow for him. All I can do is be his soft, safe place where his tears can be wiped away and more invisible bandages get placed on both of our hearts. 

Maybe it's the unknown of X's future. Will he be able to care for himself as an adult? Will he be able to work to support himself? If not, who will be there for him when we aren't around anymore? 

Maybe it's all of this combined...all of the things I don't think about every day because frankly it's overwhelming to think about any of this in depth. 

Then I hear X's sweet little voice over the monitor as he wakes up from his nap: "Hi, Mommy! Hi! Love you! Hi!"

At that moment, I wipe away the tears, I put a smile on my face, and I go snuggle my precious boy again. I will hold him a little longer than necessary. I will sing with him, play games with him, tell him over and over how much I love him and how proud I am of him and at the end of the day I'll let him fall asleep in my arms and hold him til I physically can't anymore. I will be grateful for every good moment because those moments......

Those are what get me through the hard moments. 

Surgery is DONE!

Last week, X had his big surgery day. He was SUCH a trooper leading up to surgery. It's not easy to go nearly 24 hours on only an iv at a year old. He did it though! He was brave about getting his iv in. He was brave about going with the doctors. He was just...well, brave!

The surgery itself went well. It only took about an hour and the original estimate was around 3 or 4 hours. It also turned out that what looked like a hernia in all the images and what felt like a hernia in all the exams actually wasn't a hernia at all! It was a big area of hyper-extended muscle. So, the surgeon tightened up the muscle using a pleating technique similar to putting pleats into pants and then removed a large portion of excess skin.

X is an angry little guy when waking up from anesthesia usually and that day was no exception. They had to call us back into recovery the moment he woke up instead of the usual 30 minutes later because he was inconsolable. He was hurting, disoriented, not dealing with the meds well, and he just wanted Mommy. He wanted kisses from Daddy, but he was so angry, he would only sit with Mommy. Poor guy :(

Within an hour, he was able to go back to his room and we started the recovery process. It was rocky few days. X has some stuff going on with his lungs that doesn't typically cause him any issues. After anesthesia and surgery, however, it's a different story. He was having a really hard time keeping his oxygen up. He ended up on a cannula for a few days before he was able to get rid of the extra support. He also started developing a wet sounding cough and a rattle in his chest. He also spiked a high fever of 102.6 F. A low grade fever after surgery (below 101 F) isn't uncommon, but this was awfully high; especially for his age.

The combination of needing oxygen, the rattling, the cough and the high fever can be indicators of the early stages of pneumonia starting. Thankfully, his pediatrician intervened and got him started with chest physiotherapy as soon as possible. It was just what he needed and we thankfully avoided pneumonia!!!

He did need pain medication for a couple of days, but being the strong boy he is, he didn't need any medication at ALL by day 3! Most ADULTS wouldn't have handled pain that well!

The biggest hurdle was getting X to drink his bottles. That was a struggle...ok, it was a BATTLE! The night of surgery, he drank 20 oz of his bottle in a few hours. He kept up the great drinking until about 4 am the next morning when his fever spiked. By that time, he had to have iv fluids turned up as he was drinking less and less. By the next day, he wasn't drinking at all. We asked to have his GI doctor paged.

When she saw him, she agreed that he needed to stay until he could drink enough fluids on his own to be hydrated. She gave him some medication that would help him feel hungry enough to want to eat and that was all he needed. He drank enough that day that we finally got to come home!

After a week in the hospital, X's physical recovery is well on its way. His incision looks great! He's healing nicely and moving and playing a lot more. His spine is already straighter than it's been in a while and his reflux type symptoms are totally gone! YAY!

The big thing we're working on now is healing the emotional and mental injuries. In a child like X who has to undergo frequent and often painful things, they develop a lot of anxiety in the hospital. That anxiety amplifies after they come home. That's what we've been working through the past few days. It's almost PTSD (Post-Traumatic Stress Disorder) type symptoms, but in a 20-month old little boy. It's heartbreaking to see that his toys, his sock falling off during play, even sometimes clapping his own hands startle him so badly that he just cries and shakes. But, true to who he is, X is overcoming the anxiety a little bit each day.

Incision with the bandage still on

Incision with the bandage off

“It ain't what they call you, it's what you answer to.” ― W.C. Fields

A few posts back, I talked about IVH, and what that meant. I also mentioned there were some other things that related back to having IVH that we would talk about later. Later is today for one of those things: Cerebral Palsy.

We've known for most of X's life that there were going to be some pretty big hurdles he would face. Once we knew about the severity and location of the IVH that X had, we pretty  much knew he would have cerebral palsy. It was really just a matter of finding out the exact type and extent of cerebral palsy he has. That would, unfortunately, take time. A child's brain is still growing and developing until somewhere between 18 and 24 months of age. Until X was at least 18 months old, we wouldn't be able to get the full view of what damage had been done as a result of the IVH.

About a month ago, X had an MRI. He was put to sleep and an MRI was done of his brain. We've had a copy of the radiology report for the past month. I'm not going to talk about it because it's written in what I'll just call "medical speak". It's VERY technical and it's taken us a few conversations with X's neurologist to understand exactly what we were reading.

The really important report we needed was actually written by the neurologist. We just got it a short time ago. A lot of it was background history about X, some is a simplified explanation of what was found on the MRI, and the very last part was the "Impressions". (Just in case you're wondering, on pretty much any medical report, "Impressions" is where you'll find the diagnosis information.) That section was - and usually is - very brief. There were three things that stood out. First, X has mild hydrocephalus which we already knew about. Secondly, it turns out X only has 1/2 of his cerebellum. That more or less just means he'll have extra trouble with balance and coordination. The last thing was Cerebral Palsy (CP) . The type of CP was also defined as spastic quadriplegia.

You might be asking yourself what that means. I'll explain what that means. First and foremost, I do NOT suggest you start Googling this! Not everything you find online is correct, some of it is very broad information, and some is written in more of that medical speak I referred to earlier. That can make it nearly impossible to understand.

Ok, here is X's CP diagnosis explained:

In super simple terms, spastic quad CP means that X had an injury to his brain (IVH) that has affected his muscles, coordination and balance. That's really all the important stuff to know. There are several types of CP. Spastic quad is just a fancy way of saying the muscles in all four limbs - so both legs and both arms  - are affected in his specific type of CP. Now obviously, CP is more in depth and complicated that what I can explain here. What I can say is we've gone over everything with X's care team and have learned as much as we can about what this diagnosis means for X specifically. How it applies to him and his needs is totally different than it applies to someone else.

Here are a couple of graphics that might help explain the various types a little better:

Again, this is all super simplified compared to all the vast amounts of information about CP. This is just what applies to X. We already knew he had special needs. As a result of this CP diagnosis, we've been given more answers; answers that will help us to help him. He needs a wheelchair. We don't know if he'll always need it or not. The odds are he probably will. He may not always need it for full time use, but he'll likely always need it available to him. As a result of the type of CP he has and because of missing half of his cerebellum, his muscles tire far easier and much faster than yours or mine do. Every movement he makes is very deliberate and conscious. He uses a lot more energy to do something like hold his head up that you might. So, the wheelchair will allow him a place to rest and conserve his energy. It allows him to safely go where he wants or needs to go. For X, a wheelchair is a blessing. 

So there you have it; the latest, greatest, up to the minute info about the journey we are on with X. It's an interesting ride to be sure! 

The S word...

The S word came up the other day in a conversation regarding X. No, we weren't at all surprised. In fact, we were almost giddy that it was used...although, this is probably not the S word you're thinking it might be! I'll explain...

One of the complications of X's delivery and prematurity is a hernia...and it's a doozy of one too. It's very large and....well, here I'll show you:

This is what is looks like from the inside....

And THIS is what it looks like on the outside...


















Unbelievably, this was taken on a day when it was "smaller". Yeah...not good.

There are many theories about what kind of hernia this is exactly. We've heard it's diaphragmatic, maybe abdominal..there are lots of guesses. It doesn't really fit into ANY category. What I can tell you is that X has had this since he was just a few days old. For basically his entire life, he's had to try to do everything from eating to rolling to sleeping and anything else babies do with this huge ball on his side. It's been a rough journey to say the VERY least.

The complications from this hernia and the pressures it causes range from reflux symptoms to now the beginnings of scoliosis. We've been to see multiple surgeons and each time we were more or less dismissed. This did NOT make this Mama a happy lady.

You see, what I couldn't seem to get the surgeons to understand was how much this one thing was negatively impacting X's life. He can't drink more than 4 ounces of his bottle at any one time. He has reflux that he didn't have before this got so large. He struggles with GI problems from the hernia compressing his GI tract. And now his spine is starting to be affected as well. While the rest of the issues aren't great, they're manageable with round the clock care and a big team working together to make sure X's needs were being met. Then we found out that his SPINE was being affected. Frankly, that's not a side effect we were willing to put X through.

So, we went back to the surgeon a few days ago. We went very prepared this time. We had letters from as many other members of X's care team as we could possibly manage. In these, they each explained how this hernia was impacting their specific realm of care for X. They talked about their observations about how it was negatively impacting his quality of life. They talked about their concerns with it not being addressed sooner than later. We went prepared with examples of how each and every symptom caused by this hernia had worsened since our last visit. Finally, we talked to X's GI doctor who PERSONALLY went to talk to the surgeon face to face and they agreed it was absolutely time to deal with this.

So in a couple of weeks, X will go in for surgery to finally repair this hernia. Yes, the dreaded S word.

The downside is that this will be a big surgery. It can't be done laparoscopically with the size and placement of the hernia. There's too much risk of puncturing something that shouldn't be punctured. Instead, X will have to have the repair done through a large incision on his abdomen. It'll reach from about his belly button to his back. It'll be large. It'll hurt. It'll leave a pretty big scar. It means several days of being in the hospital to control pain and get him back on track.

If I said I'm looking forward to this, I'd be lying. I'm absolutely not looking forward to the surgery part. It's risky but necessary. I know he needs this...but just like every other time we've had to make a hard choice or agree to put him through a hard procedure, I worry. He's my baby. He's already had to fight so hard in his short life and sometimes I really dread putting him through more. Despite my own fears and worries, I know in my heart of hearts this is the right decision for X. It will improve his overall quality of life. If it was purely a cosmetic procedure, I wouldn't even consider it. X is perfect exactly how he is. But, as I watch X struggle with so many complications that make his day to day living so HARD for him - all of which are a direct result of the hernia - I'm reassured this is right. This needs to happen. I AM looking forward to the positive impact this will ultimately have for X...and I'll be right there with him through it all.

Medical Equipment and Mixed Emotions

This past week, we've entered a new phase of X's development where he's ready for medical equipment. An order was written and submitted for him to get a bath chair, wheelchair and stander. Another order was written for him to be fitted for DAFOs (a type of brace for his feet/legs). An example of the bath seat and a DAFO are below.

A bath seat

DAFO

As great as these devices are for X, I experienced some very mixed emotions about them at first. The day we were told the orders for this equipment had been written, I found myself a little misty-eyed off and on. I've become used to hearing hard things. I think it just goes with the territory when a child has special needs. Still, there are times that hearing something I knew was coming catches me off guard and I'm not always prepared for the range of feelings and emotions that get brought up.

Having a special needs child is - for most parents - not anticipated. In X's case we had no way to know or prepare for what his needs would be. There are still a lot of unknowns even now that he's 18 months old. Much of his development and abilities depend on him. We're doing our very best to see that he receives the right care, support and devices to give him every opportunity to reach his fullest potential. This equipment is one of many steps that need to happen to help him achieve the best possible quality of life that he can. 

Over the past few days, I've had time to think and reflect on my feelings about him needing medical equipment. The sadness that hit me initially has dissipated and now I feel nothing but excitement! What a wonderful time we live in to have these devices available! I'm excited to see how having these devices will improve and enhance X's life. He'll finally get to experience things in a way that he's not ever been able to before. 

I'm sure there will be many other times in X's life that we'll be told something that brings up more mixed emotions. I learned a long time ago that this will happen often and when I least expect it. The best thing to do when that happens is to face those emotions and allow myself to feel them. It's ok that I'm sad sometimes; but at the end of everything I've always been able to find a reason to be thankful.

Dear Life: BRING IT ON! I accept your challenge!

Choices

One of the hardest parts of having a special needs child who is medically complex is the constant need to make choices regarding their care. It's not an easy task. It's not as simple as choosing a good pediatrician,  deciding whether or not to vaccinate, choosing cloth vs disposable diapers, etc. I remember those being the (at the time) daunting choices we were making before X was born. After he was born, our choices became much more critical; even life and death at times. 

As X has grown older, it seems like those decisions we need to make become increasingly difficult. We've had to choose over 20 providers for X. We have to weigh the risk and benefit of several medications. We have to make choices regarding what tests and procedures are beneficial and which aren't; knowing that often times even the necessary ones are painful and difficult for X. We have to choose which surgeries are in his best interest and which aren't. There's so much we constantly must make choices about. The difficult part is that we aren't the only ones who have to live with the consequences of our choices. X does too. 

This past week, X was acting very abnormally. He's typically a very good sleeper. He's usually very happy. A few nights ago, he went to bed happily. Four hours later, he woke up screaming and crying. He was inconsolable for 4 hours despite trying everything that usually works. We knew we/he needed help, so we called his wonderful pediatrician at 2am. She asked questions and after hearing the level of discomfort he was in, she suggested we take him to the emergency room. She was concerned that he may have a possible bowel obstruction.  

We were instantly faced with the choice of taking him in or waiting it out. The roads were bad from a snow storm so getting to the closest children's hospital 45 minutes away wasn't possible. This meant taking him in would mean going to our local hospital where they really aren't equipped for the needs of children; especially special needs children. It meant an exposure to illnesses and germs that his weak immune system may not be able to combat. It nearly certainly meant having to watch him endure tests and procedures that would be hard on him. Or we could wait it out and risk a potential disaster. Nothing about this was an easy choice. It never is. 

We opted to take him in. He went through hours of tests and procedures. He was miserable and crying. They finally figured out he didn't have a bowel obstruction, but he did have some other issues that in the doctor's eyes needed to be addressed urgently. Around 8am, we were given two choices: they could admit X and transfer him to the children's hospital or we could go home and see his pediatrician later in the day. We opted to go home and see his ped later. 

I'm sure the doctor thought we made the wrong decision. But, we know X really,  REALLY well. The issues the ER doctor was convinced were urgent are "normal" for X. We deal with them all the time. With no bowel obstruction, it was best to go home. So we did. It turns out X is just fine and was having a harder night with some of his regular challenges. 

We've made many hard choices the past 17 months. There are many more we'll still need to make. We try to do what any good parent does: make the best possible choices for our child that we can. The picture below perfectly sums up what making these choices is like:

Failure To Thrive

What does it mean to thrive? According to every definition I could find it means to grow, develop, flourish or succeed. While X thrives in many ways, he struggles greatly with his weight gain. He has been diagnosed...or perhaps "labeled" is a better way to put it...as Failure To Thrive (from here on out, we'll just use FTT). You're probably asking yourself what does it mean when a child is labeled as FTT? Basically, it means they don't gain weight as expected. This is one of the main things we have to watch carefully and consistently with X.

If you have children, you're most likely familiar with growth charts as well as percentiles for height/weight/length. Can I just say: I HATE GROWTH CHARTS! Seriously, I hate them! X doesn't fall on the "normal" growth curves. He never has. He started life at a tiny 1 pound 12 ounce weight. Now, at 17 months old, he weighs 17 pounds. He's tiny by traditional standards. However, if you stop and look at how far he's come from that little 1 pounder start, he's come a LONG way!

For the longest time I measured every drop of formula or food he took in. I diligently charted it, counted calories, and worried when he didn't eat as much or gain as quickly as other kids. I tracked every gram of weight he gained or lost. If you want to know the truth, I almost became obsessed with charting his intake and making sure X hit goals and specific amounts of calories and goals for amount of weight gained per week. I worried constantly.

One day, I stopped and realized...tracking X's intake and weight gain was consuming me. It was actually GETTING IN THE WAY of my bonding with X. He was picking up on my stress and worry. As a result, he didn't eat as well which ultimately meant he didn't gain as well. When I realized that, I stopped. I deleted the apps (yes, apps plural) on my phone and deleted the bookmarks on my computer. I realized it didn't matter. He was gaining. He was growing. He has never done things in the "traditional" way ever. Not once in his whole life. I needed to trust him that he could eat and grow and be healthy. I needed to trust myself that I was doing everything in my power to help him do that.

We know there are medical reasons for why X doesn't gain and grow as well as other kids. Some of it is because his body simply burns more calories for a few reasons. Some of it is because his metabolism is very high. Some of it is because of some some gastrointestinal problems that are being addressed. Some of it is because of a hernia. Some of it is hereditary to have a tall, slim build (his older brother has the same body type). There are reasons why. Most of them, we can't change. The ones we can help him with are being addressed.

In the past 6 months, I've stopped tracking and obsessing over calories, intake and weight. A funny thing happened when I stopped: X started eating more, gained better and grew more consistently. He's still tiny. It's just who he is. I've learned to let go. I trust him. As a result, he trusts me more. We've bonded much better. His feedings are a relaxed, happy, and playful time. If he only drinks 1 oz, then he only drinks 1 oz. He'll drink more later. It's ok. It's more about the quality of his feedings than the quantity he consumes. It doesn't mean I don't keep an eye on his overall pattern of gaining and growing so that I know if he's headed for trouble. I just don't track and obsess over it anymore.

To me, X is in no way failing to thrive. Sure, his weight gain is slow. FTT kids tend to not have gained 3 times their birth weight by age 1. X has gained 17 times his birth weight!

Most kids who are FTT also don't interact with their surroundings. They won't make eye contact. They're irritable. They're severely developmentally delayed with no other explanation as to why. X is nothing like that! He's very interactive, maintains eye contact very well, is happy and well adjusted, and his developmental delays are due to his IVH and the resulting complications from that.

Many FTT children end up on feeding tubes. For that matter, many preemies and special needs kids end up on feeding tubes. It's due to a variety of reasons, but is a very personal choice parents must make when weighing the benefit vs. risk for their child.

One thing I've learned as we've established X's care team is that some providers don't believe in a child's ability to work through struggles. They want to cave too quickly and jump to the "easy" fix. All my mom friends who have tube-fed kids will attest to the fact that a feeding tube is NOT a cure-all. It comes with it's own set of complications and worries.

At this exact point is X's journey, a feeding tube isn't something that's needed or even being discussed. We and his team fully believe that in his case, he's capable of sustaining his nutritional needs and growth with the right support and the right medical food. However, we're open to the discussion of a feeding tube if at any point it becomes necessary and is in X's best interest.

As we've learned more about FTT, X's reasons for that diagnosis, and as I've taken a step back and trusted that X could do this...he HAS. He's making progress. That progress is a team effort. X is seen by over 20 providers who help us keep him on track. Among these, he sees Occupational Therapy, Physical Therapy, Speech Therapy, Gastroenterology, Surgery, Pediatrics, Developmental Pediatrics, Genetics, Neurology, Psychology and Nutrition. They work together as a team to ensure that X is developing and growing properly on his OWN growth curve. So far, he's doing well. We work diligently to make sure he's receiving proper nutrition and support.

FTT is a difficult diagnosis to work with. There are good days and bad days. There are wonderful gains and devastating losses. Some can be explained; some can't. Every day is different. Through all of it, I keep in mind that it's about quality instead of quantity. Changing my own mindset has changed X's. He can do this! I have faith in him. I believe in him. Although his progress is slow, he's gaining and growing. He's healthy. He's happy. He's thriving and making wonderful progress. He is definitely not failing to thrive!

Things I Wish You Knew About My Life

Happy Holidays! I haven't updated my blog for a couple of weeks because frankly, things have been a little hectic with Christmas coming up. I hope you all had a wonderful holiday! Around here, Christmas has come and gone and we had a wonderful day as a family. X enjoyed checking out his gifts. He didn't open them himself because wrapping paper, tissue paper, bags, boxes, bows, etc are hard for him. One of the things we struggle with for X are sensory issues. For right now, I'll just say that things that don't bother other kids can really be difficult for him. I'll talk more about this another time. The sensory stuff sort of led me to thinking about what I wanted to share with all of you.

Being the parent of a preemie - especially a special needs preemie - is definitely an adventure. Every day is different. Every day we face challenges. There are things about this journey that are great. There are things that are difficult. There are things that are just plain hard.

A few months ago, I shared with some friends something I'd written about what my life is like parenting a special needs preemie. I would like to share this tonight.

                                          THE THINGS I WISH YOU KNEW 

1. Having a preemie is one of the scariest, hardest, things I've ever had to live through. Every day for weeks, we wondered if our baby would survive. We watched him struggle through illnesses, setbacks, tests, and complications that you probably can't even begin to imagine. He has experienced more in his first year than most people will experience in a lifetime.

2. Most of the time, I do ok with everything we've experienced. A lot of that is because I'm constantly busy doing something to take care of X: feedings, diapers, playing, bath time, various therapies, stretches and massage to keep his muscles loose, and all the while still trying to let him just be a little boy. The truth is, I have bad days too. There are days where everything brings tears to my eyes. There are days I worry for my little guy and hurt for him. There are days I don't want to get out of bed because I'm so exhausted from taking care of his needs around the clock...but I have to because he needs me.

3. As a result of everything we experienced, I've been diagnosed with post-traumatic stress disorder. My need to keep X home is only partly to protect him. Yes, part of the reason has to do with keeping him from contracting various - and countless - illnesses. I have to worry constantly about him getting sick because what can be a minor cold to another child can hospitalize or even kill X. The main reason I stay home, however, is because there are certain sounds, sights and smells that trigger stress responses for me. For example: I still to this day cannot see or hear LifeFlight without starting to shake and cry. I can't walk into the hospital where he spent months in the NICU without my heart racing and a huge knot forming in my stomach that makes me nauseous. I can't help these responses. I don't  tend to talk about them because I don't want to be seen as damaged or sick or wrong. I am none of those things. I am a warrior who has been through hell with my precious child and I carry the battle scars of that experience.

4. Sometimes...I just need to talk about my experiences. I don't want you to try to "fix" it for me. I already know you can't. You haven't walked in my shoes and the experiences we've been through simply cannot be fixed. That's ok. But please...please...don't tell me you understand if you haven't lived a life similar to mine. Unless you have, you can't begin to understand or even imagine what this journey is like. I don't expect you to. It's ok that you don't understand. All I want is for you to listen when I need to talk and not judge how I feel or what I have to say.

5. Having a preemie means I have been robbed of things you probably take for granted: photos of my growing baby belly, a baby shower, using that birth plan I'd so carefully written up, being able to hold my baby immediately, family celebrations of baby, etc. Even though I'm so incredibly thankful that X simply survived, there's still a part of me that will always be a little sad about not being able to have all the "normal" things I had hoped for.

6. Just because my journey was different than yours doesn't mean that I'm not happy for you when your plans work out the way you hope and dream they will. I'm HAPPY for you! I'm  happy you get to experience things I never got. I want to celebrate with you and be part of your milestones with you. Please don't be afraid to share them with me! I know that you don't always know what to say, but please know that I long to be part of your happy times. If I can't handle it right then, I'll let you know...but please don't leave me out.

7. We are ALWAYS busy. Incredibly, unbelievably busy. Not only are we juggling regular toddler care, but we have therapy several days a week and several additional doctors visits we go to every month. We're dealing with paperwork, insurance, coordinating with various providers, traveling to and from all our appointments, following up on various tasks and needs, keeping our basic housework caught up, and giving X every opportunity to just be a little boy that we can. He needs to have as normal of a life as we can possibly give him. We need that too. Sometimes, despite our best efforts, time just gets away from us. We aren't trying to ignore you. We desperately need to know that you haven't forgotten us. Send us a little card in the mail. Send us an email or text message. Just please let us know you remember us.

8. Even though X is no longer in the hospital, his needs take up the majority of our time around the clock. We still need help. We probably need it now more than we did while he was in the NICU. If you ask us what we need, we really may not know. We rarely stop to think, about it. As long as you haven't been sick, we won't refuse your help. Be specific in your offer to help because we really may not know what we need done at that moment. Mow our yard. Help us with dishes or laundry. Offer to run errands for us so we don't have to try to figure out how and when one of us can get out without risking X getting sick. Make us dinner and bring it over because we rarely have time to think about WHAT to make let alone trying to figure out WHEN to make it. Mop our floors. Vacuum or dust for us. Take the dogs on walks. There's a lot that needs to be done that we run out of time and energy to do.

9. I've been asked if X is sick or "what's wrong with him" more times than I can count. Please know that X is NOT sick. He's very healthy. Nothing is wrong with him. His body just does things differently than yours or mine because of things that are outside of his control. You cannot catch what he has. He just has challenges in life as we all do. We're working on and through them together. It's a process. A journey. Nothing more.

10. It's ok to ask questions about X's unique traits, his medical needs, his prognosis..anything you want to know. Some of the things he has to work through are visible and obvious. Some aren't. I love it when you ask questions! X needs more people in his life who really understand him and his needs.

11. Please don't point, stare or whisper about X and his needs. You might think I don't notice, but I do. X is starting to notice too. It hurts my feelings and although it may not hurt X's feelings right now, it will eventually. I'd much rather you be direct and ask questions. I don't mind helping you understand X. I'm just grateful you took the time to ask!

12, On that same note - PLEASE, don't stop your children from asking questions, or reprimand them when they do! They don't mean any harm. They aren't offending me. They're just naturally curious. I wish more adults would ask questions. Look at it like this: I'd rather they ask now and learn about X and his needs and differences while they genuinely want to know. Why? Because your child(ren) are X's peers. They are the ones he'll be in school with, attending church with, going to events with. etc. I'd rather help them understand X now than them be afraid of him or mean to him later because they just don't understand.

I  bring this point up because of an experience we had. Over the summer, X and I were at a Mommy & Me story time. A little boy, about 3 years old, came up and asked me why X's eyes are crossed (again, something we'll talk about later). His mother immediately got this horrified expression on her face, rushed over and started to reprimand him. I stopped her and asked very nicely why she was so bothered by her son's questions.. She said something along the lines of she didn't think it was polite for him to ask and she didn't want me to be upset. I explained to her exactly what I said previously: Her son was one of X's peers and helping him understand X now while he genuinely wanted to know was better than waiting until he was afraid of X. I also explained to her that I wasn't upset or offended; in fact, I was grateful that he had come up to ask and wasn't afraid to be near X. After that, she and her little boy sat with us at story time. Her little boy would stroke X's hair every day while telling him hi and bye. X LOVED it! They became good friends over the weeks we went to story time. Hopefully, that little boy also learned a little bit about compassion and looking past differences to see the person behind them.

13. Having a special needs child means that every hope and dream I had about what X would become or who he would be has changed. My hopes and dreams for him aren't gone; they're just different. I've had time to adjust to life with a special needs child. In many ways, it's a blessing. X having special needs has allowed me to take a step back and enjoy little things. To X, little things are big things. I appreciate the little things so much more now. I also know that you may not have had time to adjust to his special needs. It's ok. I don't expect you to adjust the same way or at the same level. This is our journey to take together; not yours. It really is ok. :)

14. I wish I could help you understand how desperately part of me wishes X's life was easy. I wish he could do all the "normal" stuff other babies and toddlers do at the times they usually do them. The fact is he just can't. But, the only thing I ever see about X is that he's perfect. I could give you a list of all the "stuff" from his medical charts, but "stuff" is exactly what it is. I often picture little yellow, sticky notes all over X. Each one has a different diagnosis written on it. Every day, in my mind, I take every note off, tear them up and throw them away. They do not define.him. He is X; not a diagnosis. All I want is for you to see what I see; I want you to see X. I want you to know the person I know: He's gentle. He's happy. He's kind. He has a great deal of empathy. He's silly. He loves to laugh. He has a wonderful sense of humor. He loves his pets. He loves the color red. He likes to look at picture books. He enjoys talking to Grandma and Grandpa on Skype. He loves avocado. He dislikes sweet foods. He loves big trucks. He hates crowds and noisy environments. He loves Spider-Man. His favorite animal is a giraffe. He's a little boy. THAT is the X wish you could see.

15. I am no longer the person I used to be. Having a preemie..a special needs child...has changed me forever. You need to know that my life will never return to the "normal" it used to be. Please don't be sorry that life threw me a curveball. You see, I love X. I love every unique trait and need he has. They're part of him. To not love them would be not loving X and that simply isn't possible. Yes, most of all, please don't be sorry. I'm not! :)

IVH: When we knew our son would have special needs

At only 3 weeks old, X had already dealt with a lot of complications. We'd just learned about his PDA . The second complication that X's doctors had been monitoring was IVH (intraventricular hemorrhage). IVH is, in very simple terms, a brain bleed.

IVH is especially common in babies born before 30 weeks gestation because their blood vessels are extremely fragile and sometimes not even fully formed yet. The vessels don't begin to get stronger until after 30 weeks. X was born at 25 weeks which put him at higher risk of developing IVH.

IVH has different grades: 1, 2, 3 and 4. Each grade is an indicator of how severe the bleed is. Having one IVH, or one bleed, doesn't necessarily mean there will be more, but if there's more than one bleed, each is assigned it's own grade. Here's a little about each grade:

Grade 1 IVH: This is the least severe of the bleeds. It happens within a very small, confined area

Grade 2 IVH This grade of bleed is also not severe. The bleeding is still contained within the ventricles.

Most babies who experience a Grade 1 or Grade 2 IVH go on to develop with little to no complications. In fact, most of the time you'd never know they'd had a bleed at all

Grade 3 IVH: This bleed is more severe. The ventricles to become enlarged by the amount of blood. Grade 3 can result in hydrocephalus (too much fluid in the brain) and possibly even long term brain injury.

Grade 4 IVH: This is the most severe of the grades of bleeds. With grade 4 bleeds, the blood not only enlarges the ventricles, but it it goes into the brain matter. This can lead to a number of problems that can include hydrocephalus, cerebral palsy, hearing loss, vision problems, learning disabilities, etc.

Different grades of IVH

In X's case, he had two separate bleeds. The medical terminology we use when documenting his bleeds for his medical records is BILATERAL GRADE 4 IVH. It's a fancy way of saying he had a bleed in the first ventricle of his brain, a secondary bleed in the second ventricle and both of them were Grade 4. There's no way to treat IVH or to stop it from occurring. If it happens, it happens; if it doesn't, then it doesn't.



If I said we weren't scared and sad..even devastated...when we first learned that not only did X have bleeds, but they were grade 4, I'd be lying. No parent wants to hear that their child will most likely have long term problems because of a complication that couldn't be prevented.

We spent the next couple of days letting family know the diagnosis and X's potential prognosis. Those were hard conversations to have. Then, we started to educate ourselves. We spent a lot of time in the medical library at the hospital. We talked to the doctors and asked questions. We found support groups online and talked to other parents who were already where we were going. Eventually we posted about it on social networking. After all of this, we knew that X would be ok and so would we. We also knew at that point that X would have special needs.

So fast forward to now: Yes, X has special needs. We're still figuring exactly what his "normal" is. It may still be years before we really know what his needs are and what his abilities will be. Here are just a few of the things we know about (and we'll talk about them in more detail in future posts):

Mild Hydrocephalus
Developmental Delays
Optic Nerve Damage

The main thing we have learned is that these diagnoses DO NOT DEFINE X! Sure, they're part of his life. The truth is at the end of the day, all most parents want is for their child(ren) to be happy and healthy. X is both of those! He's very happy. He laughs and smiles all the time. He loves to interact with people. He's very social. He loves to play. He rarely cries or is unhappy. X's joy and zest for life is so contagious! He's also healthy. The conditions he has don't impact his overall health. He's growing bigger and stronger every day.

X's reality is this: He doesn't yet sit independently, crawl, walk, feed himself, etc. The key word is YET. We're working on these goals. He continues to progress and astound his medical team. The truth is, at the end of the day, those things don't matter. If he never did any of them, that's fine. X isn't a "typical" 1 year old in many ways. That's ok, too. We've had time to adjust to life with a child who has special needs. Most other people haven't. We promised him a long time ago we would never give up on him and we'd give him every opportunity we could for the fullest life possible. We've done our very best to keep those promises. No matter what his challenges are, he has possibilities; and that's all he needs!