Monday, December 1, 2014

Guest Post: JP, Sydney, and Caitlin

About a year and a half ago, I was fortunate to meet a wonderful family through Blake's baseball team. Their son, JP, played on the team with Blake, and during the season,, we all became friends. Of course we connected through the challenges we both faced with our children. This year they moved away, but we still keep in contact through facebook. Read on to hear the story of JP, Sydney, and Caitlin, told by their mother, Rachel.

 Tell me about your pregnancy with your first child, John Paul.

I have been blessed to carry three of my children to a time when they can live. With my first child, John Paul, my pregnancy was horrible morning sickness leading me to be diagnosed after a few trips to the ER with Hyperemesis Gravidarum. Eventually in my second trimester I would go on to get some of my energy back, enough to work until I was 34 weeks, where I began having contractions that were 2-3 minutes apart. Thankfully they were able to give me a shot of Terbutaline at the hospital to stop the preterm labor at this time while keeping me on observation overnight for having dilated to a 3. I went into preterm labor two more times that same week, and finally it was discovered it was due to how sick I had become with double ear infections and Bronchitis while having a UTI. My son, however, would go on to be born at term 39 weeks. While we tried for natural birth, it was eventually discovered after 19 hours of labor that my son had become stuck behind my pelvic bone, thus making it necessary for an emergency C-section. John Paul would come to greet his family at 5:05pm August 19th, 2006 after close to 24 hours of labor at a whopping 8lbs 4ozs and 21" long.

How were his early months and years? Did you ever notice anything not quite right?

Things went well with Johnny. He was always ahead of his milestones, from holding his head to sleeping through the night at 3 weeks old. However, he would later stop sleeping through the night at around 9 months old, where he would start sleeping in what I would refer to as "nap cycles" sleep for 2-3 hours at an interval and then up for four hours. He would go on to act like this for several years. At 15 months old, I had a neighbor who had a son around the same age, and we would get together often for play dates. It was during this time that I noticed that her son would be able to pay attention to being read to, or play for longer periods of time with a toy than my son. In the meantime, my son would run circles around us all until we were just ready to drop of exhaustion. As he continued to age, he became more "stubborn" with not listening or following household rules that had always been in place, always testing limits.

When did you discover you were pregnant with your second child? Were there any complications?

When my son was a year old I was diagnosed with Hashimoto's Disease, and was told that I would never be able to have more children by multiple doctors. We had always planned on having more, but it just didn't seem to be in our cards. So, when I discovered that I was pregnant with our second child Sydney Marie, when John Paul was four years old, both my husband and I were elated. Finally, we felt a chance to complete our family. I discovered I was pregnant with her on September 2, 2010. I would find out the next day when I went to the doctor for confirmation that I was 10 weeks along, and therefore, just about done with my first trimester of pregnancy.

This time around things were different. I felt great; I was never tired, never got morning sickness and even lost 20 pounds in the beginning of my pregnancy. However, something just always seemed off, like something was wrong with this pregnancy, and despite all the ultrasound and tests nothing proved to be wrong with our beautiful baby girl. I was young, 25 years old, I was gaining good weight; nothing spoke of anything being "off." Until January 1st, when I was at Walmart and started having low-bearing pressure, thinking that this was my second child and about to be 27 weeks the next day, I simply thought I had breached that period of every pregnancy when one begins to experience the lovely Braxton Hicks. So when we got home, I took some Tylenol and went and laid down where I would fall asleep early that night around 8pm. I would wake up that night with the feeling of needing to use the restroom, where upon I discovered that I had blood in some discharge. At first it didn't seem bad so I woke my husband up and told him. However, something tugged at me to go check and see if it had gotten better or worse, and it was.

I drove myself to our local hospital to get checked. While there, I was told that I had become dehydrated and had simply overdone things. I was monitored by the nurse for a couple of hours and then sent home, having never actually seen the doctor. I would at 3am go on to start having some spotting again but had been told this could happen as I had "overdone things." It never occurred to me that something else may have been going on. At 9:15 (the times are so clearly etched into my memory as I had a cable box that sat on top of the TV that dared to stare at me so it seemed), I woke up thinking that I had just had my water break. But who breaks their water on the day they become 27 weeks? I then began to have contractions that were 3 minutes apart. Clearly, I had "overdone it" so I laid back down to watch cartoons with my son. However, the contractions refused to give up, so I packed a bag for my son, tried to find someone to come and get him while I called my husband to let him know that I was in labor.

What happened next? And what did you discover about your new baby?

I rushed back to the same hospital, never thinking anything would be wrong and that I would be going home pregnant. Instead, within two hours I delivered our precious baby girl Sydney Marie via C-section at exactly 27 weeks. We learned that this was a blessing in disguise as my daughter would be born this tiny 2lb 2oz baby girl with her cord wrapped around her neck 3 times and strangling her. If she not been born when she was, she would have died in utero. However, this would send our family on the perilous journey that is called prematurity. Sydney was born too soon, too soon to breath on her own, or to maintain her weight as we soon watched her plummet to 1lb 13ozs. She couldn't eat on her own so she was fed via IV, and syringe-fed breastmilk at mere drops. She fought and won her battle and came home 83 days later from the NICU she had been transferred to via ambulance the day she was born.

When you have a child who's born as a micro preemie or preemie, it seems that they hand you this "book by mouth" that contains a list of all the possible things that could possibly go wrong having a child born too early. Things like Cerebral Palsy, brain injury, blindness, cognitive disabilities, the list went on for miles. But, we felt blessed simply to bring home this little 6lb 13oz baby girl almost a full 3 months after she had been born.

What did you notice in her early months and years?

Sydney did not like to be held, or rocked, and she looked like a newborn but acted like an older baby who was unable to do anything for herself. She would eat and sleep, never wanted to be bothered with anyone or anything. As a preemie you have two ages: a chronological age- the age you actually are; and an adjusted age- the age you should be if you were born full-term. At six months old, we started the typical baby food stages, only it was noticed that Sydney always slouched to one side. We figured it was because she was still so tiny she could barely be seen in her highchair. With time it became more and more evident that this slouch persisted. She was also significantly delayed in her milestones, but we were warned this was a possibility; she had been born early after all.

When did you discover you were pregnant with your third child? What was the pregnancy like?

We were terrified yet excited to learn on Sydney's 1st birthday that we were expecting our third child Caitlin Marie. We of course had our NICU memories flash before our eyes and were so scared to have a repeat. However, our OB assured us that the likelihood of having another preemie like Sydney was very low even though we never discovered the reason she did come so early.

My pregnancy with Caitlin also was a breeze my first trimester. I walked a good average of four miles a day taking our son who had started kindergarten at this time to school and back. It would not be until I had to take my son to the ER for an illness that things would go awry when I was in a hit and run accident on the freeway that caused me to started having contractions at 14 weeks. However, after a thorough exam right after the accident my OB said the baby looked great and I would soon be on the road to recovery but to be on modified bedrest for a few days just in case.

But, things never did slow down. At 18 weeks I would be rushed to the ER for preterm labor, placed on bedrest for a month, which is extremely hard as I had a 1-year-old and a 5-year-old at this point in time. But, I did do my best to follow doctors orders. It would go like this for weeks; be fine for a while and then have some problems with contractions here and there. I had routine monthly cervical checks to make sure I was dilating or shortening.

Every week I got closer to that 27 weeks was held with baited breath. It finally came and went and I began to relax and enjoy my pregnancy. Once again at 28 weeks I found myself back in the Labor and Delivery with contractions, where my OB performed a test called a Febronectin test (Ffn) that is able to see if your at risk of preterm labor within two weeks, and it came back positive and put on bedrest but told that I was good to go. I then found out I had gestational diabetes with this pregnancy, and it was particularly bad, as even on Metformin my blood sugar levels were out of control.

What was your delivery like with Caitlin? Were there any complications?

So, it was decided that I would be placed in the hospital for a couple of days at 31 weeks just to be monitored as I was taught how to use insulin injections. While there my doctor wanted to run more tests since I was at risk of going into preterm labor. One test came back fine, and I was moved to an antepartum room where I would spend a couple of days and then later be discharged. However, no more than five minutes in my new room than the nurse came back with a wheelchair and some bad news. I was funneling, which means I was dilating from the inside out. Two hours later I went into labor and was unable to stop it. I was sent to the hospital my daughter Sydney had been in the NICU at so that Caitlin would have the support of the NICU should I deliver her early.

Fewer than 24 hours later found I was being prepped for a classic C-section and Caitlin was born at 31 weeks 1 day, a full month later than her sister had been, at 3lbs 10ozs and 16" long. We felt more prepared, not just as parents but as a family this time around. Even the NICU staff remembered us, and would often ask how my older two children were doing.

What did you discover about Sydney and JP at this time, and then with Caitlin?

It was during this time that Sydney was learning to walk, only it wasn't a normal walk. She would fall constantly and they were bad falls. While we helped Sydney learn, we were dealing with JP who was diagnosed with severe ADHD and Oppositional Defiance Disorder the year before. Trying to juggle all three became quite the challenge.

At 65 days old Caitlin would finally come home to join the family. Only I would soon figure out that she never seemed to notice faces or lights being turned on or off. And she would scream if she couldn't sense anywhere near her. Telling myself she was fine, she hadn't been cleared of ROP (Retinopathy of Prematurity); that's all this was. An ROP check 2 weeks later revealed that my daughter was blind. Her eyes were perfectly formed; there was nothing wrong with her eyes. Her brain had simply turned her eyes off. A diagnosis of Delayed Visual Maturation or DVM would be given. It would be later discovered that while looking through her NICU pictures, it was evident that she had sight at one point shortly before she came down with her meningitis, a common illness preemies can develop in the NICU.

After discovering all of this with your kids, how did you manage?

This was extremely hard! Here I had a child who had ADHD/ODD and would throw the world's
worst tantrums, severely struggling in school to the point he spent most of his time in the principal's office instead of in his 3 hour long kindergarten class, a daughter who still needed to be carried
everywhere because she was struggling to walk and now a beautiful baby girl who would never know what a rainbow looked like, or what it looks like to watch the rain fall. It was truly devastating, but I had to keep it together for the sake of my children. Within a few weeks of getting the news of Caitlin's blindness, Sydney would be referred to a Pediatric Neurologist to see what was causing her delays and why she still was falling so much- to the point she had fallen and broken her nose at one point. It would lead to a brain MRI, where it would be discovered that Sydney has a Periventicular Leukomalacia (PVL) or dead brain matter; two spots were clearly indentified in her brain as being
cysts. It would be said that due to her cord strangulation at birth, she had suffered a stroke in utero-- this had caused our baby girl to develop Hypotonic Ataxia Hemiparesis on her left side, basically meaning that she would be forever weaker on her left side than on her right, and that she would never have the endurance to walk very far without constantly falling and may eventually require a wheelchair or special needs stroller for long outings. Which 6 months later she would be given the prescription for.

How are your kids doing now?

Sydney is about to turn four years old in January. She's a bright star in our lives. She has some behavioral issues that would resemble autism due to her brain injury, such as sensory processing disorder, and tends to be socially awkward but she's such a love and can be a bossy mother hen to her little sister Caitlin. She does still have some falls and recently discovered she has problems with her hips, which we are still trying to determine.

Caitlin, over time, went on to regain most of her eyesight, but still struggles with it from time to time, most often in darker rooms or at night. Besides being tiny for 2.5 years old, she's such a bossy little one who is determined to make her presence known wherever she is in her family. She also has SPD, and is currently undergoing testing for autism, as well as CP. Caitlin, though, doesn't let anything get her down for long, much like her bigger sister Sydney: two very determined little souls.

John Paul is now 8 years old. After several years of fighting teachers and schools, he recently was moved to a CCB classroom, or Cross Categorical Behavior Room for kids who for whatever reason have either behavior or emotional disabilities. He struggles constantly with low self-esteem, impulse control issues, and depression, all factors of ADHD. He attends therapy outside of school a couple times a week to help, after he tried to hurt himself significantly at school one day in September. I have come to learn, both from my husband who has ADHD and my son's therapists that ADHD is rarely just a hyper little kid who can't pay attention in class--these kids truly suffer. My son is currently undergoing testing for an IEP that took me almost four years to fight for; we have already learned through this that he too has many sensory issues.

How have all the challenges with your children changed you as a mom? What have you learned? What do you want others to know about your children?

Through all of these challenges, I have learned to become a better person--to see the world differently. It's not always black and white; things don't always go according to how you planned them in life. I have learned to become a much more patient person, more empathetic and sympathetic with others going through the same things, an advocate for children born too soon, and of children like my son who know they are different but want so badly to fit in just like every other typical 8-year-old boy.

Due to fighting for my children's medical care, I have gone back to school to become a Registered Health Information Technician and a Certified Coding Specialist, so that I can work for places that advocate for children with special needs. The only thing I want other people to take from my children is that they are people too. They deserve the same love, devotion, and determination that any other child is given to strive for their goals. Also, that prematurity can happen to anyone at anytime; it doesn't discriminate from rich to poor, educated or not. I was a young mom, having had my oldest at 27 years old--I had no risks.

I often tell friends who comment to me how strong I am, and that they never could do what I do on a daily basis, that I am not any stronger than they are--I simply was dealt a different set of cards to play in the game of life. My children are strong individuals who have already overcome much more than most, but they continue to overcome things with a smile and a generosity not typically seen unless you have been blessed to live in the world of special needs children.