Wednesday, June 19, 2013

Breaking the Silence

I have been going back and forth about sharing this information on my blog. There was a part of me that wanted to keep this private but there was that part of me who knows that I have always been blatantly honest on here and that my honesty has helped others in the past who have struggled through similar situations. The latter is why I decided to share. Here it goes...

During Giovanni's birth we experienced many complications. For the full story click here. To sum it up, Giovanni got stuck in the brith canal for a prolonged period of time which caused some significant decelerations in his heart rate. His heart rate was in the 60's and would decelerate into the 40's with each contraction. To make a long story short, we didn't have time to go to the OR so they ripped me open and yanked him out (sorry for the visual). He was whisked off by the NICU team into a private room where it took a while for us to know what was going on. While he didn't need to be resuscitated, it took him a little while to cry and things were pretty scary. I don't know what his first APGAR score was, but the second one was a 9 which was very reassuring...at the time.

Since about a week old, I starting noticing these jerky movements. If he wasn't conscious during these, I would have thought that he was having seizures. Our pediatrician even picked up on this, mentioning it on several occasions, but always chalked it up to an "underdeveloped nervous system". As time went on we started noticing other issues. Feeding was a big problem. He was readmitted to the hospital as he was losing too much weight. He was choking while breastfeeding and even choking on preemie nipples when he had a bottle. We noticed that his head was hyper-extended to the upper right side. He was diagnosed with torticollis, but we weren't convinced that was it in its entirety...nor was his physical therapist.

As time went on he started to develop other odd things despite the fact that he was reaching all of his milestones at appropriate times. We noticed that his left arm seemed to get "left behind" quite a bit and when he would rake food off of his tray with his hands, he would get the food into his left hand and that is where it would remain, clenched tightly in his fist.

A couple of months ago his physical therapist mentioned that while he was making progress with his range of motion in his neck, he seemed to be quite stiff and rigid, and that his overall movements were not fluid. She told me that she was going to contact our pediatrician and recommend that Giovanni see a neurologist for a consult. The pediatrician agreed.

Going into this appointment I already knew in my heart that something wasn't right, but my brain kept telling me that everything was going to be okay and we were going to be told that these were just quirky behaviors, something I refer to as Giovanni-isms. Needless to say that my heart was right.

The neurologist was quite pleased with his cognitive development. He described Giovanni as a "bright and alert" boy and even went on to point out that with his attentiveness and level of interactions, that "there is no reason why he can't get straight A's in school". I thought that was pretty funny. One could only hope.

It wasn't until he moved on to the motor part of the neurological exam that he started to note some issues. He noted that Giovanni had increased tone in his upper extremities along with increased reflexes and clonus in his lower extremities. He also noted quite a bit of "jitteriness". After the exam was complete we sat down to discuss his findings. The first thing he said was that we needed to get an MRI of Giovanni's brain. My heart immediately sank and I wanted to throw up. He said that it appears that Giovanni has suffered some type of brain injury, either in utero or at birth. The MRI would show us where the area of injury is and that will tell us when the injury occurred. Because of Giovanni's age, he will have to be put under general anesthesia. He then started going over his findings and explaining what everything meant. Then, the words I have been dreading since his first week of life were spoken. Cerebral Palsy.

While his case is considered mild it was still hard to hear. So many emotions starting running through me from sadness to anger to fear. I won't go into my whole psychological perspective on this now, but I will say that I am slowly digesting this and doing what I have to do. I will save all of that for another post.

Since I was in such shock, despite knowing in my heart that something has been not quite right all along, I couldn't make any decisions at that time. I told his neurologist that I just needed time to digest everything. He said that was fine and scheduled a follow up appointment. I am planning on doing the MRI sometime within the next couple of months. Since the MRI isn't going to change anything, I am in no rush to do it since it carries risk because of the anesthesia. When I am ready I will do it. And that is that.

No matter what, he is still my perfect little boy! I just love him so much!

    

13 comments:

  1. I'm so sorry to hear of your diagnosis; it must be heartbreaking. My sister and brother-in-law are in the process of adopting a young boy who also has cerebral palsy; I look forward to reading your continuing story in conjunction with their bringing their son home -- even though their son is older (just turned 9!), so treatment and therapy will be different, it's always useful to know other people out there going through similar things.

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  2. Wow what a difficult diagnosis to hear... I wish you and your family strength and lots and lots of love.

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  3. i have followed you since your IVF days. I will keep you and your family in my thoughts.

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  4. I will certainly keep you and your beautiful baby Giovanni in my prayers.

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  5. My heart breaks for you. I know we have talked a lot in the past and I know that finally having this cutie pie in your life has not been easy. I'm really praying for you guys and the future to come. Your an amazingly strong person.

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  6. I send many hugs your way. While hearing our boys had CP was not exactly a shock (28 weekers with lots of complications), it was still painful to hear those words. You're right that getting the diagnosis changes nothing...but at the same time it changes everything.

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    1. P.S. My IF/personal blog is at Life As I Know It - http://www.stacieslife.com/

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  7. With you, thinking of you. I'm glad to hear that the CP seems mild, but can only imagine how difficult it was to hear the neurologist confirm your sense that something wasn't quite right. So glad you took the risk to share this. You're right - you will undoubtedly help many others with your words...plus you will be able to get some much needed support.

    Mo

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  8. He is a beautiful baby. He's got great parents. He's got resources. He's got you. Sending prayers!

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  9. God does not give you more than you can handle and sometimes a diagnosis like this will show you how strong you are. He is a beautiful baby and the future will be bright :)

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  10. he's gorgeous and sweet and a miracle baby! i know i felt like "i will get a kind of break" after all I've been through fertility-wise but we have had our share of medical stuff to deal w/ too. it's tough to see your preciousness go through something physically uncomfortable/medical. ugh...sorry you are going through this. i am so surprised they didn't sched. you for a c-section w/ all the issues you had!!!!

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  11. Sending you strenght in dealing with the doctors. Your cute little boy always brings a smile to my face!

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  12. That is really hard news to hear. I believe there is always a way forward and it is about getting the support that Giovanni and you and your whole family needs. It sounds like there was a lot of good news in the medical assessment too, so I'm sure that will be comforting as time goes on. Giovanni is such a beautiful little boy :-) Wish you and him all the best!

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