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!

All about PDAs

The first couple of weeks after X's birth were full of monitoring him very closely. He was stable finally and had been gaining weight. By the time he was 3 weeks old, he had gained half a pound and grown an inch longer. The bruising he'd had earlier had completely disappeared. He was making slow, steady progress. He'd been sick with a cold which was very scary. At that point, he still had no immune system and a cold could have easily been too much for his body to handle and he could have died. But, he made it through. He's a fighter!

X's first diaper compared to a $10 bill

Even though he was almost a month old, he was still fragile and unstable enough that we still hadn't been able to hold him. The most interaction we got with him was during his cares. Cares mean that we took his temperature, changed his diaper, his nurses would feed him through his ng tube (a tube that went through his nose down into his stomach), and he'd be re-positioned until his next cares.

Although he'd already been through quite a lot, the scariest part of his first three weeks for us were waiting for test results on his heart and his brain. You see, preemies are at risk for a number of complications. Their tiny bodies are just so fragile and they have to continue their development in a plastic box rather than in the womb.  The outcome of these tests were an indicator of his overall health and a glimpse at what his future might hold.

Today I'm going to talk about the tests for his heart and the condition that was being monitored: a condition called PDA (patent ductus arteriosus). Before a baby is born, their aorta and pulmonary arteries are connected by a little vessel called the ductus arteriosus. That little vessel is important in a baby that's still in the womb. It helps keep them properly oxygenated. Once a baby is born and takes their first breath, it triggers a response in their body that's supposed to close off that little vessel. It's no longer needed once a baby is breathing oxygen.

That closing happens anywhere from a few minutes to as long as a few days after baby's first breath. In some babies, like X, the ductus arteriosus doesn't close. That's what a PDA (patent ductus arteriosus) is. The word "Patent" just means open. So, PDA means the vessel that connected the arteries was still wide open when it should have closed.

The problem with it remaining open is that the blood from the aorta and the pulmonary arteries mixes. That mixing can put extra strain on the heart and cause increased blood pressure in the arteries leading to the lungs.

A PDA is actually a pretty common heart defect. It happens with full term babies as well, but it's 4 times more likely to happen in preemies. It's just one of MANY complications they can have. Sometimes the PDA will close on its own. Sometimes medication is needed. Sometimes surgery is needed. In X's case, his PDA was HUGE. But, he was handling it great and it wasn't causing any complications for him. So, his doctors decided to try a medication called Indocin in hopes that the PDA would improve.

Indocin is basically in the same family of drugs as ibuprofen (Advil, Motrin, etc). The idea is that it helps the PDA to shrink and hopefully close. In X's case, it caused the PDA to get a little smaller, but it didn't close. However, since he wasn't having complications, the doctors left it alone after a round of Indocin.

Picture A is a normal heart, Picture B is a heart with a PDA

Actually, X still has the PDA. His just never closed all the way. It's quite small now, and no longer causes him to have a heart murmur. He doesn't have any complications from it. He was seen by a cardiologist a few times during the past year to keep an eye on it. At the last visit we had, his cardiologist told us he feels that X can lead a perfectly normal life where his heart is concerned without surgery or any further intervention. We just have to be careful not to give him any ibuprofen for another year or so to make sure it stays closed up as much as possible. It's safe to say that the PDA is no longer really an issue. We don't even have to go back to the cardiologist anymore!

Driving out the darkness

One of the more common things for a preemie - especially a micro-preemie - to experience is severe, deep bruising after delivery. The reason this happens is because their blood vessels are just so fragile that it doesn't take much to cause them to bleed and bruises to form as a result. Little X was so bruised after birth, he had to be under special lights for several days. The lights helped to break down the high levels of bilirubin that his body produced as the bruises gradually healed and faded.

If you've ever watched a bruise heal, it gradually changes colors. Black, blue, green and even yellow are very common colors to see in the the various stages of a healing bruise. The yellow color is the one associated with bilirubin. The problem with the high levels in a newborn (especially a preemie) is they can actually develop bilirubin toxicity. The extra bilirubin can build up in areas of their brains and lead to permanent brain damage, cerebral palsy, seizures, problems with reflexes, problems with the eyes, and even problems with enamel development on their still forming teeth. None of this is stuff that you want to have to worry about; especially since preemies are already at risk for all of these things anyway.

X spent about a week under lights that helped his body break down the extra bilirubin. While he was under the lights, his eyes had to be covered to protect them. If his eyes hadn't been protected, the lights could have permanently damaged his retinas. While we were very much ok with protecting his eyes, the down side was that we couldn't see his face much if at all. He was SO small, that the little eye mask that he had on covered pretty much his entire face. It was hard not being able to see him looking at us.

The other part of this was that the bruising was painful in addition to all the catheters and iv lines that X had. He spent a lot of his first days of life sedated and given pain medication to make sure he was comfortable. He was given Fentanyl and Ativan for close to a month. The doses were gradually reduced every day until he was totally off of them. I don't know if X remembers any of this. He's still way too little to be able to tell us if he does or not, but I hope he doesn't.

"Darkness cannot drive out darkness; only light can do that..."  - Martin Luther King Jr.

I've read this quote many times in my life. I just didn't know that after X was born, it would take on a totally different meaning for me. His deep bruising wouldn't be able to heal without significant damage to his body if left in the "dark" (normal hospital lighting). Instead, he had to have lights - specially designed lights - that allowed his body to break down the bruising and the resulting bilirubin and allow his body to start the long process of healing.

This was just the very beginning of what was still to come...

Starting our journey

The night X was born was long. Once he had been flown to the other hospital, we kept our phones right by us, hoping and waiting for an update. About 4am, my phone finally rang. The nurses in my room paused what they were doing and became very quiet. I answered on speaker so my husband could also hear the conversation. It was the neonatologist that had been called in specifically to care for little X. At the time, I had no idea what that really meant, but I do now: It meant that X was the sickest baby in the hospital.

This doctor was very kind, but brief. He told us what we already knew: X was very sick. He was very unstable. He asked for permission for specific medications and blood transfusions to be given. We immediately gave permission, knowing that without these products, X wouldn't make it.

Before he hung up, he said we needed to be there in the morning; even if that meant I got a day pass out of the hospital myself. He even called my doctor and asked if I could be discharged early. He knew what I was already feeling: X needed us or he wouldn't survive. My doctor sent her partner who'd been there during delivery in to talk to me. She said they wanted me to stay 12 hours just to make sure I was ok and not having any complications of my own, but that if everything looked good, I would be discharged. Otherwise, they would give me the pass to go see X for the day if I promised to come back afterwards.

My sister had driven through the night to be with us in the hospital. My husband finally slept some. I laid awake all night, watching tv, checking the time, reading messages from friends and family...and waiting for...almost WILLING...the phone to ring again. The hours ticked by SO slowly. Breakfast finally came and I quickly ate, showered, and dressed. The doctor was working on my discharge. I was anxious to leave and get to X. As we were packing up, my phone rang again.

Once again it was the same neonatologist. My heart skipped a beat as I answered. Would it be good news? Had little X survived the night? We didn't know. The doctor told us that X HAD made it through the night. He told us that they'd been able to stop 2 of 3 medications they were giving him to help him keep his blood pressure up and that he'd started to stabilize. What he said next brought tears to my eyes.

As his voice filled with emotion, he told us that in all the years he'd been a neonatologist, he'd seen many babies as sick as X was. Few, if any, of them survived. He hadn't expected X to survive the night. Yet, he had. He asked us to please get there as soon as we could and then he said something I'll never forget: With his voice breaking, he said that X was a miracle baby. He had survived when he shouldn't have.

We wiped away our own tears and assured the doctor we would be there within the next hour. We signed the final paperwork, grabbed what few things we had, and started walking to the car. It was strange to leave like that. No flowers. No balloons. No baby in a carseat. Nothing that said we'd just had a baby. There was no celebration. The nurses all smiled at us in a sad sort of way when we left. I don't think they thought X would survive. I don't think WE were sure of it ourselves at that point.

We drove quickly to the hospital were little X was waiting for us. Neither of us said a word on the way there. We were both caught up on our own thoughts, but I know we were both thinking the same thing: What if he didn't survive?

When we finally got to the hospital, we found the NICU. We got our parent ID cards and gave them all our contact information. Then, we learned about something we would do hundreds of times to come: scrubbing in. We would spend countless minutes every day at this big sink, using the same soap and sponges that surgeons use before going into surgery. We learned how to thoroughly scrub up to our elbows and how long to scrub for...all in an effort to make sure that X would stay well since he had basically no immune system.

After we got scrubbed in, a nurse took us back to X's room for the first time. NOTHING can prepare you for seeing your own child in a room full of machines and wires and monitors and alarms. It was a strange setting to be in. It was foreign to us. Taking our first steps into that room started us on a path that is so different than the one most parents take. Robert Frost summed it up best: "Two roads diverged in a wood, and I - I took the one less traveled by..."

X's actual room in the hospital

Once Upon A Time...

Once upon a time. It's how most fairy tales begin. And most of them end with "And they lived happily, ever after." We're still writing our happily ever after. What that is remains to be seen. Instead, I wanted to share how our story began.

I think all parents have big dreams for their baby. They share with excitement their big news of a little bouncing, bundle of joy that will be joining their family. They pick the perfect name. They talk about their hopes and dreams for the baby. They plan parties and celebrations. They look forward to seeing their baby's ultrasound. They wonder what their baby will be like, who they'll look like, what they'll grow up to be. They plan the perfect birth.

But sometimes...sometimes those dreams don't turn out the way you think they will. Our fairy tale changed; it's still changing. Here is the beginning of our fairy tale:

Once upon a time, early in 2012, we found out we were expecting a baby! We were excited and began to make plans. We picked out names and planned on a baby shower. We had some bumps along the way, but after several scary weeks and bed rest, the pregnancy progressed with no further issues. We enjoyed going to doctors visits, hearing the baby's heartbeat, anticipated our ultrasound to find out if we'd be having a boy or girl. Things were wonderful and we were tremendously happy.

At 20 weeks, we had an ultrasound to measure baby's progress and find out the gender of our little one. The ultrasound was fun and baby turned out to be a little boy! We already knew what we were going to name him. As soon as we left the ultrasound, we both started calling family to let them know the baby's gender and name. We posted pictures online. We were so excited! We even started to finally plan out X's room. Life was good. We were happy. X and Mommy were both healthy and doing well. It seemed like everything was perfect!

Just 5 short weeks later, while I was at work, I began to feel...strange. Something was different. I called the doctor and told her what I feeling. She thought it would be wise for me to go to Labor & Delivery and get checked out. So, my wonderful hubby picked me up at work, and off we went. I don't think either of us thought too much about it. After all, we were only barely 25 weeks into a 40 week pregnancy. We both thought that at the worst, I might be admitted for a day or two for observation.

Once at the hospital, they sent me to triage and monitored me and baby X for a few hours. Everything seemed fine. They finally determined that I was probably just dehydrated and told me to take the next 2 days off work (the weekend) and then see my regular doctor on Monday. They told me to be sure to drink plenty of water and stay off my feet for the bulk of the weekend. It wasn't what I wanted to hear, but I was willing to do anything I had to for X to be ok. So, I went home, made myself comfortable on the couch, drank lots of water and watched movies for a few hours.

Very rapidly, I went from being fine to being in full blown labor. Something was DEFINITELY wrong, so I called my doctor again and told her that I was having time-able contractions. She sent me back to the hospital. The hospital we'd planned on delivering at was a 40 minute drive from our house. When we left, contractions were 10 minutes apart. By the time we go to the hospital, they were only 3 minutes apart.

We still thought I would probably just be admitted and this time probably given fluids and medication to stop the contractions. We were wrong. When I got to Labor & Delivery, the nurse took one look at me and realized I was in full blown labor. She asked how many weeks I was. When I said, "I'm 25 weeks and 1 day today", she looked sort of panicked. She quickly took me to triage and started getting information.

After she got me settled in and checked me, all the color drained from her face. She did, however, manage to keep her composure and said that she wanted to have the charge nurse come in and check me as well just to get another opinion. I still wasn't panicked at this point, but I was becoming suspicious that what we THOUGHT was going to happen and what would ACTUALLY happen were probably no longer the same thing.

The charge nurse came in and the entire process repeated itself down to her losing the color in her face. Then she said, "We're having this baby tonight. Now. He's coming. I can already feel his feet. There's no stopping it. We'll get you to a room. Things are going to get really busy really fast, but I'll be here with you." I remember turning to my husband, bursting into tears, and saying, "This isn't supposed to happen! It's too soon!"

Everyone jumped into action. I was taken to the biggest delivery room because it was directly across from the resuscitation room . I remember hearing hearing two doctors being paged to L&D for an emergency delivery. I knew it was for me, but it was still very surreal. Things WERE happening quickly. I was given an iv, medication, shots, and flipped on my head at an incredibly rapid pace.

You might be asking why I was flipped onto my head when the nurse had just told us baby X was on his way. You see, it turned out the hospital we were at didn't have a NICU (Neonatal Intensive Care Unit). We hadn't thought to ask about it, because I don't think ANY parent plans on needing a NICU for their baby! It wasn't something that had ever crossed our minds. So, I was flipped on my head to slow down X's delivery as long as possible while LifeFlight was dispatched from another hospital a few miles away. It was a 12 minute flight once they were able to take off.

As I lay there, holding my hubby's hand, my room was suddenly filled with 5 or 6 nurses, a neonatologist, a pharmacist, 3 members of the respiratory team, and the two doctors who had been previously paged. Withing minutes, the sound of LifeFlight landing on the helipad just outside my room shook the windows. Then the already crowded room was joined by an anesthesiologist (just in the event we needed to do a c-section). Then, the flight crew (2 ICU nurses and the pilot) also joined us along with my doctor's practice partner who was able to get there faster than my own doctor could. That room was CROWDED.

Immediately before the doctors delivered baby X, the entire room became quiet as one of the doctors asked if we would mind him praying before the baby arrived. Of course I didn't mind. With this extremely early birth and the possible complications our baby would now face, I knew little X needed every bit of help he could get. This sweet doctor said a quick, but sincere prayer for me, for my hubby, and most especially for little X. It was the sweetest thing I think anyone has ever done. It's a gesture of kindness and sincerity I will never forget.

Moments later, little X came rushing into the world. They immediately took him to the resuscitation room. He never made a sound. The huge group of people in our room literally ran with him. The room became eerily quiet with only me, my husband, my doctor's partner, one nurse and the delivering doctor remaining behind.

Then, we waited. For over an hour we waited for news. We kept asking for updates, but weren't really told much. All I knew was that the longer it took, at least X had a fighting chance. A nurse appeared briefly to tell us that although X was VERY sick and in distress, he was "beating up the nurses" and that his willingness to fight was a good sign!

While we waited, we sent out urgent text messages, made urgent phone calls and made one fast but direct post on social media: "X was born at 10:53pm. He's a very sick little boy. Prayers are appreciated. We will update when we can.". Immediately our phones begin to constantly buzz and ding with incoming text messages and notices from social media sites. We read every message, but we were so overwhelmed and so concerned, I don't think we ever responded to any of them.

Another hour ticked by incredibly slowly. It felt like time had almost stopped. Finally the door to my room opened, and a nurse came in. She said they would be bringing little X in for a quick visit before he was taken to another hospital. Moments later, a gurney with a little isolette on it that held our tiny, newborn son was wheeled in. Everyone except the flight nurses and the pharmacist left to let us see this tiny little boy for the first time.

I stared at this beautiful little baby. It was almost surreal because I couldn't hold him. His tiny body was barely visible under all the wires and tubes he was connected to just to keep him alive. He was wrapped in plastic to keep his delicate skin from drying out and to help him stay warm enough. The flight nurse asked the hospital staff for the camera from their nursery and then asked if we'd like to touch little X. She carefully opened up the isolette and we were able to stick our hands inside and touch him. He immediately grasped his Daddy's finger and held on SO tightly.

I finally managed to ask how much he weighed and
how long he was. It was still so hard to wrap my head around the scene in front of me. I was told he weighed 1 pound, 12 ounces and was 13 1/2 inches long. Had I not seen my tiny, little son for myself, I wouldn't be able to fathom what that would be like to see a baby so tiny. If you have a new, unopened bag of powdered sugar laying around, I'll give you a way to visualize this. That unopened bag of powdered sugar is roughly the same length as baby X was. He was a little over half as wide as the bag. And that little bag of sugar weighs 1/4 of a pound MORE than he did. He was tiny...so, so tiny.

Someone brought in the camera. The flight nurses took pictures for us, gave us a LifeFlight t-shirt and then sat down with us for a moment. They explained how sick little X really was. They weren't even sure they could put him on the helicopter. He was very unstable. He was septic. He was having a lot of trouble keeping his blood pressure up. He was on a ventilator and would need an oscillator if he had any chance at survival. The nurse went on to explain that babies born as early as X had been often had many complications. She told us that one of the main risks for him would be brain bleeds, and that flying with him could make those bleeds worse because of the pressure changes on his already incredibly delicate blood vessels. She told us that caring for such a critically ill baby would be expensive - at least $1 million if he made it do his due date.

We looked at each other, looked at X, and finally looked back at the nurse. We told her to do whatever they needed to do. Cost didn't matter. We would figure that out. We told her we understood the risk of flying him but knew that without that flight, his 3% chance of survival became 0. We understood what we were agreeing to. They finally were able to stabilize X just enough to meet the bare minimum requirements to be able to fly with him. They quickly closed up the isolette and headed down to the helipad. My hubby walked out with them and the baby.

The charge nurse had come back in so that I wouldn't be alone in my room during this. Even with her there, I felt incredibly alone as I sat in my bed. I stared out the window into the dark night at the helipad. I watched as the medical team loaded our sweet baby onto the waiting helicopter. The doctors and my hubby walked back inside the hospital and then LifeFlight slowly took off with our precious, tiny, newborn baby inside. I sat there, watching them fly away and crying quietly. That was the hardest moment out of the entire experience for me. At that moment, I didn't know if I would ever see my little X alive again. I didn't know if I'd just said goodbye to him for the first and last time. I didn't know who would be there to take care of him at the other hospital. I couldn't yet go with him and I cried because I wanted desperately to be able to hold and comfort this little baby...and I couldn't. I hoped and prayed that he was ok, that he understood, and that he knew we hadn't left him...that we'd be there with him as soon as we could. I was scared for just a moment as reality sank in. Then, I knew I had to be strong for X, because this was now HIS "Once Upon A Time".

From There To Here

I've thought about writing this blog for a long time. Documenting our journey, joys, struggles, triumphs, worries, and day to day events is incredibly important to me for a couple of  reasons: First and foremost, I feel like X will need to know about this journey at some point. It's incredibly important to me to document our lives as they happen for him. Secondly, this journey is HARD. There are a lot of things that are unknown and many things that are just "wait and see". The financial impact of raising a preemie - especially a preemie with special needs - is at times overwhelming. Despite the difficulties, the rewards and blessing of having a child with special needs far outweighs any other impact. Writing about all of our experiences is healing to me. I'll talk about this in more detail in a later post.

There's a lot I have to share about how our journey started, where we are now, and of course there will be updates about where we go from here. All of that will take time. Please check back for more updates. I'm looking forward to sharing our journey with you!