My awesome and brave son, my hemihero! (Part #3)

Here is the “big” finale to Lucas’ harrowing birth story and the beginning of the long journey we embarked on called Hemiplegia.

Where we last left off, Lucas escaped the NICU seemingly fine after the first 8 days of his life, of which 4 were on a ventilator and a miracle drug saved his life. My hubby and I could finally breathe a collective sigh of relief and fall in love with our little boy. I look back and I’m glad that I didn’t know that there was anything wrong with our new baby, it would have been too much to process and the grief, stress, and anxiety that would have hit me like a runaway train, would have been so overwhelming.

Lucas seemed fine, but then he was also very cranky. My other two children were pretty easy going babies and we chalked up Lucas’ orneriness to colic perhaps? He also didn’t sleep much and we found that very odd for a newborn and he had trouble breastfeeding. I soon gave up on that and he would also have a hard time with the bottle. In my new mom brain, I didn’t even imagine that these were all signs that something was wrong. I remember being sleep deprived and frustrated with a baby that was doing the opposite of my other two kids. That should have been a flashing billboard of abnormality, but again denial is a stronger emotion then acceptance.

The early weeks of his life were spent consoling him and of course getting to know our little guy. At 10 weeks old, my hubby and I were attending a convention in Las Vegas and brought the baby along because my mother-in-law was living there at the time.

We left Lucas with her for one day and when we went to pick him up that night, she said she had noticed that his right hand was fisted and didn’t open up like the other hand. I thought she was overreacting and being a worrywart granny because newborns can’t control their hands well and are still learning more coordinated movements. Yet, now we know that Lucas’ “Mim” was absolutely correct that something was wrong and that was the first clear sign of hemiparesis.

At 5 months old, he seemed to be hitting all the milestones like smiling, cooing, rolling over, etc. We had a follow up with the hospital NICU and Lucas was seen by an occupational therapist. She evaluated him and I brought up the hand issue and she replied by saying, “Yes, he definitely has some kind of palsy.”

Wait! What did she just say? Palsy, isn’t that term part of other bigger issues? I had heard that word, but never really cared to learn more because it wasn’t part of my world. As soon as the visit was over, I grabbed the fairly new invention of a smart phone and googled “palsy”. There was Erb’s Palsy, Bell ’s Palsy, and Cerebral Palsy, but what the heck did these conditions have to do with my baby? We found a top neurologist at our local children’s hospital and it was an 8 week wait to just get an initial visit even with super awesome PPO insurance. Those 8 weeks of wondering what was wrong with my baby were disconcerting to say the least.

Finally the day came for Lucas’ first of many visits to a neurologist and she confirmed that he definitely had some paralysis, but we needed an MRI/MRA to confirm. Another month went by to get that done and then it came, the results that would change everything. The MRI showed a massive stroke that basically wiped out his entire mid left brain. Imagine cutting a honeydew melon in half and taking one half and then scooping most of the melon out, only leaving some of the flesh in the front and rear sections, but everything else was scooped out to the rind. Not much left is there? That is what happened to Lucas’ brain and this part controlled movement. We were flabbergasted because he was kicking and moving all his arms and legs and didn’t seem like a child that suffered a massive stroke. We were told lots of things that day like neuroplasticity would help the brain rewire, need to start therapy, blah blah blah. It all became a blur because now I had to go home and research this diagnosis.

He was diagnosed with right-side hemiplegia, but what did that mean and was that the same as hemiparesis and what was an infarct, a CVA, an ischemic stroke, and did he also have cerebral palsy? The doctor basically diagnosed and confirmed one thing, but that was it. We were told to just take note of his progress and keep up with therapy. No further details, no future outlook of possible side effects of paralysis that would severely affect Lucas’ development and life.

Where was the instruction manual to all of this, your baby has hemiplegia, now what?

Luckily for me, there were other parents who already walked the path we were embarking on and they would become and still are the ultimate resource of in-depth experience and knowledge of what to expect with having a little stroke survivor.

My awesome and brave son, my hemi-hero! (Part #2)

Ah, Happy New Year! Hope 2016 brings us all more health, love, and success!

Lucas had some setbacks with his epilepsy in 2015, mainly a definitive diagnosis of ESES (Electrical Status Epilepticus during Sleep) that has really switched things up for us, but that is a whole other post for my readers to look forward to.

So to continue to Part #2 of Lucas’ story and why he’s my Hemi-Hero, without further ado…

Where was I? Oh, yes, back at the fact that I knew that something was not right with my baby boy.

He was born screaming, almost as if he was in dire pain. Being a veteran mom, I knew his screams were not typical of a newborn, especially because he wouldn’t stop crying. My first two kids did not cry when they were born, they kind of just came out and looked at me and said, “Hey mom, I’m the stranger that has been living inside your body these past 9 months, nice to meet you!”

Lucas was 8 pounds and 7 ounces and his APGAR scores were 9’s, he was a week shy of the 40 week mark, so basically full-term and the OB and the nurse on-call didn’t suspect anything was wrong. I noticed his nail beds and lips would not “pink up” in the usual time a newborn would and he rotated between blood curdling screams and almost falling asleep, but it seems like he was passing out. In my mother’s heart, I knew this baby was suffering. We spent about 2 hours in the labor & delivery room recovering and then they moved us to a suite. He still seemed to struggle, so I asked the nurse to take him to the nursery to be checked out further by the neonatologist.

My hubby and I passed out a while after and were awoken at 4 a.m. by the nurse and told that we shouldn’t panic, but our boy was in the NICU and had been placed on CPAP. While on the machine, he also stopped breathing twice and that was who the “Code Blue” was for. We rushed to the NICU and that was the first time I saw him in the incubator hooked up to all sorts of machines, needles, and wires.

That first day of his life, he only kept deteriorating and they didn’t know why, but suspected a few things. Tests were performed, labs were drawn, and we had to await the results. Later in the day, we were told that he was the sickest of all the babies in the NICU and they were doing their best for him. By now he was on a ventilator and with each passing hour they had to keep turning up the oxygen levels, little did I know that was really bad news. I thank God that I was naïve to what was really going on at the time because my anxiety and freak-out mode would have increased 100 fold!

At just about 24 hours old, the doctor took us into a separate room to discuss what was going on. It’s the room where they give you the really bad news and I felt like we were on an episode of “ER” or “Grey’s Anatomy”, it was surreal. They told us that Lucas had Persistent Pulmonary Hypertension of the Newborn (PPHN), Patent Ductus Arteriosus (PDA), and a Patent Foramen Ovale (PFO). The PDA and PFO were considered “congenital defects”, which is a fancy way to say he was born with these issues. He was currently on his way to 90% oxygen and was too critical to move to the children’s hospital NICU where he may need to get onto an ECMO machine. They wanted to give him pulmonary Surfactant which was usually used in preemies to help them breathe and was not usually effective in full-term babies. Lucas had a 50/50 shot of this medicine working, if it didn’t I don’t think he would have been here with us today. Within 30 minutes of the drug coating his lungs, it began working. We prayed to God and our angels in heaven to help our boy and his oxygen level was able to be reduced to 30% within 30 minutes of administering the treatment. At 100% oxygen, babies can have serious brain damage and are at high risk for going blind and deaf, thankfully I was only told that by a nurse after the fact. My hubby and I were able to breathe a momentary sigh of relief because this medicine was working and we had some hope that Lucas would pull-through.

He remained on the ventilator for 4 more days, each day his oxygen was being reduced, his blood gases were coming into range, jaundice was treated, respiratory rate and blood pressure were stabilizing, and his echocardiograms showed that the PDA was finally closing on its own without the need for surgery. He spent 8 days in the NICU that felt like a sad and scary eternity, but I know that other parents have spent way longer holding vigil for their children in the NICU and it’s an experience we all want to forget and just bring our babies home.

Upon discharge, they said everything had resolved and they expected there would be no long term damage, little they did or we know that these doctors would be so wrong.

My Awesome and Brave Son, my Hemi Hero! (Part #1)

My Hemi-Hero, my son Lucas, is now just over a month shy from turning 9 years old! I feel like the years flew by and yet it seems like an eternity too!

Lucas is my third child and my baby; he has always been full of surprises. My hubby and I only planned on having two children and when we had a girl and a boy, we decided that two kids was enough. We waited until our older son was just over a year old and my hubby was set to have a vasectomy. About two days before his procedure…well let’s just say we had some fun and he decided in a split second to not use our usual form of contraception at the time, the method of withdrawing. I was furious and he argued what were the odds that I would get pregnant, well three weeks later when my period was M.I.A. and my pregnancy test was positive, the odds were pretty good!

I have to admit that not only was I furious, but mentally I had prepared myself for a life with just two kids and I had just started a career that I put on hold for my first son. I did decide to keep the baby, but I resented this fetus. When we found out we were having another boy, I didn’t need any baby items because my older son was just a year old and I didn’t really want to celebrate this baby’s impending arrival. My pregnancy didn’t have any complications or wasn’t unusual, very much on par with my other two pregnancies. I was turning 26 right before Lucas was due to be born, so no issues with me or the baby were expected.

When I was about 32 weeks, it hit me like a ton of bricks- I went into full nesting mode! I was getting excited about our new addition and got everything ready for our new kid. I was finally making peace with putting my career on hold a while longer and having another little boy to love.

A week before my due date, my OB/GYN asked if I wanted to be induced early because of my borderline gestational diabetes and history of large babies, my first child was 8 days early and weighed in at 9lbs., 6 oz.! I said, “Heck yeah!” and on January 26, 2007, I checked into the hospital to be induced. Labor progressed slowly because I was holding out on getting an epidural, but the tension in my body during contractions was not allowing my cervix to dilate fast enough, so I caved and got the epidural. Then things progressed quickly and a few pushes later at about 10:20 p.m., Lucas entered the world.

I knew immediately something was not right…