Thursday, November 11, 2010

The lingering effects

"I can't believe I am 10!" was the first thing awakening me this morning. I look at my clock and realize I have only slept about 4 and half hours again. I really thought we would be past that now but the effects of a premature birth still linger with us. After a decade, the optimism has begun to fade and reality has set in to what we do have to deal with. We run like a well oiled machine around here most of the time. Very few surprises pop up anymore like that day ten years ago when I went into labor. I knew something was wrong, the lower back pain was excruciating and then my water broke. Fortunately I had read enough to know that at 25 weeks, they did have a chance at survival. The statistics at that time were 50% chance the first night.  The percentage increasing with each passing day. The overall statistic for survival was 80%. I am sure that has changed  now due to medical advance in a decade. But for us that night changed our lives forever.




Both boys arrived 15 weeks early. Their eyes still fused shut, no cries. We would not hear a cry from them till almost 3 months later. I never had that final trimester most women endure. Gaelan weighed in at 1lb 12oz and Ghavin weighed 1lb 11oz, both were a foot long. They should have finished off their development in utero. Most babies do but for the next four months they finished their utero development in a NICU isolette and incubator. The hospital was about 30 minutes from our house. So much time was spent on the road traveling back and forth. I can not even count how many times we got home only to get a call that said we needed to come back because it did not look good or another problem had arose.
Gaelan was the sickest, born under distress, he had a bleed on the brain and his lungs were diagnosed with Chronic Lung Disease within a day. The bleed resulted in a diagnosis of Hydrocephalus. Of course when you deal with the brain , they really can not tell you much..... just wait and see how he develops. In a course of 4 months, he fought over 15 infections consisting of Pnuemonia, , Strep B , E.Coli just to name a few. He had a PDA ligation surgery, seizures and several surgeries on his retinas. One of the biggest catch 22s of having the babies on the oxygen for a long period of time is it accelerates the growth of blood vessels and they start pulling the retinas which untreated can result in blindness. He recieved his last blood transfusion 4 weeks before his discharge.
Ghavin came home a week and a half earlier than his brother after fighting off just as many infections and seizures but thank goodness his lungs were responding and healing better than his twins. He mainly struggled with his stomach, developed necrotizing enterocolitis and reflux. This will plague us long after he leaves the hospital. Ghavin received his final blood transfusion 5 weeks prior to his dismissal.



Most people just assumed they lived, all is well with the world. Unfortunately the effects of a premature birth linger long after the discharge from the hospital. They started  occupational and physical therapy when they were 5 months old. That was just the beginning of many therapies including speech, sensory, behavior and listening. I remember at one point in our lives we had a therapy every day of the week. Finally after 8 years of therapy, we stopped because honestly.... we were tired and ready to just accept this is as good as it gets.  Plus we were struggling with the newest challenge of academics.


The first three years were mostly all health and medical issues we dealt with. Ghavin was diagnosed with failure to thrive because of his severe reflux. He was a colicky baby for more than a year. If you have ever had a colicky baby on your hands, stretch it out a year long event. You get the idea. Solid foods had to be introduced slowly to both boys. Gaelans palette had suffered from the prolonged time he was on the ventilator. He also was diagnosed with mild cerebral palsy. Due to those issues, he would not eat solids till after he was a year old.  We were not allowed to be out around people because they caught eveything. Regardless of this , they managed to contract RDS several times, and stomach viruses that put us in and out of the hospital for the next 3 years. Just as the health issues started to subside, we noticed things about Gaelan and Ghavin that would take us down the road of several specialists. We have had the terms Autism, PDD-NOS, ADHD, ADD, OCD, RLS loosely thrown at us. Acronyms became our life along with the doctors, the therapies and the IEPS. This time frame to me was harder than the initial aspect of their stay in the NICU. Gaelan did not sleep, Ghavin did not talk, both had meltdowns over everything. We were all just exhausted.



Fast forward 10 years..... Gaelan has mild cerebral palsy, OCD, anxiety, and a sleeping disorder. He fixates on laundry, cleaning, talks a mile a minute, wears glasses and overall is very social. Ghavin still has reflux,and was diagnosed last year as dyslexic and dyscalculic. He is shy, quiet, artistic, humorous, hates roller coasters and observes alot. We homeschool now to alleviate some of the anxieties that traditional school creates. Both boys still have not landed on the growth chart for their age. They look as if they are entering kindergarten or first grade and weigh about 45 pounds. The twins see an endocronlogist that has told us their bone age is running on the average about 2 years behind their actual age. We see a nuerologist, behavior therapist, orthopedic, nutritionist and pediatrician on regular intervals. Gaelan must have his retinas checked annually. He will be at risk for detachment for the rest of his life they say. Our day consist of brain gym exercises for processing and memory, games to promote sensory and motor skills and schooling at our own pace. Gaelan still does not sleep for long periods of time which means I usually do not as well. Sometimes we read, bake or he just talks while I try to hold my eyes open.

I am grateful they lived but wish we knew why I could not carry my babies full term. November is Premature Awareness Month.  I encourage you to visit http://www.marchofdimes.com/prematurityawareness.html to learn more about this rising epidemic. The numbers are growing and they are astounding. Yes, most are surviving but the effects are lingering. I can attest to that.

12 comments:

  1. wow I salute you brave n courageous mom..
    I know it's a big challenge to raise not only one child but twins with these conditions,it's really hard job...but you are doing it so yes I am so proud of you! :)

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  2. You are an amazing woman and mom!

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  3. I had no idea how much this could affect little ones. What a brave and amazing woman you are! This really opened my eyes to babies born premature. ((HUGS)) to you!

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  4. What an eye-opening post, Cassie! You are an inspiring mother, and all three of your boys are so wonderful and unique. Thank you for being so honest and real!

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  5. I had no idea. Wow!
    I can relate to so many of your struggles and have to say, you inspire me. We're on our 3rd year of challenges. We go to therapy 4 days a week and see numerous specialists as we try to figure out what is wrong and how to fix it. It's so challenging, but to not have my little guy in my life, well, that is unimaginable.

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  6. Wow, that was powerful, Cassie! Even though I'd heard it all before, it is still amazing to think of what you and the boys have gone through. Look how great they turned out!! That is all because of you and your diligence as an advocate for them.

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  7. Ditto to what Robin said! I had heard a lot of it before, but reading it all at once is even more powerful! You are an amazing mother and the boys are so lucky to have you to fight for them.

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  8. Thanks for sharing your life and your heart. I think your statement that the effects of prematurity are lingering is one that needs repeated. I remember bringing our son home from the NICU thinking, the worst was over and really the real work was just beginning in a sense. God bless you. Your boys are beautiful and I can tell you are a very caring mother.

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  9. Thank you SO much for sharing the lingering effects and being part of the Fight for Preemies. Many people think that preemies come home and will be perfectly healthy when many of them have medical issues for life.

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  10. So much of this resonates. My preemie twins were born at 24 weeks and spent 5 months on the NICU. One had open-heart surgery, they didn't talk until they were 4, we had years and years of therapy. My son has a number of learning issues and takes medication for ADD and anxiety. He also took growth hormone for 8 years, as he weighed only 47 pounds when he entered sixth grade. It's been a long, hard struggle, but I am happy to say they are now 19 years old and happy, healthy young adults. I know your pain and your exhaustion. I also know there are days when you struggle, as well as days filled with joy. I hope as your boys continue to grow and develop, the joyful days become continue to multiply. My best wishes to your family.

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  11. Cassie, you are an incredible woman. Your boys were adorable babies and they are growing into handsome young men thanks to thier beautiful mom. Iknow you from AF, and had no idea your family this difficult cross to bare. It is clear that you are such a dedicated and loving mom.. It so difficult to watch your children struggle. Your boys will be in my prayers.

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