Tuesday, March 19, 2013

What does "stable" actually mean?

Kenny had his comprehensive care appointment today. They check his weight, height, lungs, BP, and nutrition. It all went fairly well. He hasn't lost or gained weight but the doctor noticed that he looked a little sunken in in the cheeks. I noticed it too, but didn't want to sound like a worry wart of a mom. We decided to start back up on his duo cal to see I'd that will add some weight to his body. Their main concern is that his body will start sitting down if he isn't getting enough calories...so were going to bring on as many calories as possible.
She asked me I'd I had any questions to which I said no, then she asked me how I was doing. Ok...well...you don't ask someone who has been going through he** these last 6 years, how I'm doing. I bawled my eyes out! It just sort of happened, ewps. I told her the honest truth...I wasn't good. I have horrible flashbacks of when nick was dying and every time Kenny was so sick, I thought he was going to die. I have anxiety over what to,or row will bring and...well...pretty much...I'm a mess. The PTSD and high anxiety that I've been facing has gotten me to the point where I keep asking what more? Waiting for the other shoe to drop. I said I was afraid of losing Kenny and she completely agreed that that was a very valid fear. She told me she love Kenny and is so sorry that were going through all this with him. I've been so strong for so long, that everything has finally caught up to me. The doctor reassured me that as of today, Kenny is stable. His lungs sound a little sluggish, but attributes it to a cold starting.
This whole life is something that I NEVER in a million years, thought I would be experiencing. It's very hard, actually...it's very painful. I did mention to his doctors about a make a wish for him and we all are looking into that. We don't know what the future holds for him...and I get physically sick just thinking about it. I want him (and the rest of my kids around until they are old and have to bury my 100 year old a$$). There is just so much on our shoulders and it weighing very heavy. Some say its our cross that we bare...but no..it's just so very much.
So...our Kenny is "stable" his is ok and for now, I will take that with a smile...but deep inside I just wish he was just healthy.

This picture is one of him sleeping with his favorite baby...buddy.

Monday, March 18, 2013

I've been busy with baking...

So it's the Lenten season and again, I am giving my services to help others. I've been baking cupcake...not just any cupcakes...gourmet cupcakes to sell at our church fish fry. I'm loving it. All day Thursday I bake and around midnight, when my legs are killing me, I pass out in bed only to wake up the next morning to get all the kids off to school and start making the frosting and decorate! Now, were not talking about a few dozen cupcakes...it's more like...50+ dozen!
I've added and tried so many new flavors...it's so fun to see what sells and what doesn't.

Oh boy did we hit a milestone!

Having a child with special needs, milestones come as a huge welcomed step, especially if they have global delays. So as I am grateful to the Heavens and back that my son has slowly but surely reached milestones that we never thought he'd reach, there is one that he has finally reached...and it only took...almost 6-ish years...the milestone? The terrible twos (cue in I've horror sounds)
Since we all know that us moms have learned to take a quick bathroom break every now and again, especially us "older, seasoned" moms because the bladder you once had as a twenty-something year old has fallen ever so slightly after having kids...let alone 8 kids and 16 pregnancies in my personal experience...yeah...no comment from the peanut gallery....and no, I do not need Depends..yet.
Anyhow, stepping away from my personal bathroom break talk...
I got Kenny and Gina their lunch. They both wanted Ramen noodles cut up small...again, no comment on what I feed my kids, at least it's something that my tube fed son actually eats. I made them their bowls, told them to sit at the dining room table, told them that I had to go to the bathroom and I'd be right back. 30 seconds...ok...40 seconds it took me to go. I come downstairs to find what looked like a food fight had taken place...or...the noodle monster left a trail of his own..everywhere! On the couch, the floor, the tv, the computer...even in the kitchen! I asked Gina what happened and she shrugged her shoulders and said Kenny did it. Soooo, I looked at Kenny and he has his bowl, which is now almost completely empty, and is laughing...then he dumps the rest right on the living room floor! Oh dear god help me with this one. My house looked like it was struck by a tornado made of noodles, and my son who is going to be six but has the mentality of a much younger kid, just did this. It wasn't right...it was totally wrong. So I grabbed his hands and told him no and had him (and his accomplice, Gina) vacuum up the noodles. My poor vacuum is now filled with noodles. oh how I wish we had a dog again.
Part of me was so ticked off inside that they...he did this, but another part of me was this giddy little girl who was throwing a party inside because my son actually hit another milestone...a terrible one at that...but he reached another developmental step. And to that, I am so grateful. Having him makes me realize that even though I am totally exhausted (mentally, emotionally and physically), I am so glad to see him meet milestones. I hope and pray they never stop coming...good and bad ones (well, ok..the bad ones can stay away for as long as they can) because when that happens, my dreams for him ends.
So carry on noodle throwing, car lining, junk drawer emptying (and sorting into piles (yes, he does that too), doll carrying, little boy of mine, want to remember every thing you do that makes me smile and also irritates me...it means you're growing!

Sunday, March 10, 2013

Lasting effects of prematurity on this 2nd annual Parents Of Preemies Day

Today is  Parents of Preemies day!

Parents of Preemies Day is a national day of awareness on Sunday, March 10th, 2013 recognizing the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down. 

Each year, 13 million babies are born prematurely across the globe to parents who never expected their birth stories would be so challenging. Though medical breakthroughs continue to improve outcomes for preemies, experts are only now beginning to understand the intense psychological effects that premature birth has on moms and dads. 

In my husbands and my 17 years of being married, we have had 8 preemies. Our first was born at 34 weeks after 5 weeks of bedrest because my water broke at 29 weeks. My track record got a little better after that, my second daughter was born at 35 weeks, my third daughter...she was a 34 weeker along with daughters 4 & 5. There were no real concerns with my first five other than apnea, feeding/sucking issues and temperature control...which was all pretty much resolved when they left the hospital. I do think that it did have lasting long term effects which, to this day, have been fluffed off by pediatricians and counselors. From OCD to communication issues..with a slight case of autism like actions. But that's a whole other post ;)

When we thought we were done having kids, there came the shocker to us...TWINS. Now, anyone knows that when you are diagnosed with a bicornuate uterus, chances of carrying a baby is slim...but twins? Almost impossible. I was going to prove everyone wrong...well...sort of.
At 21 weeks I was put onto bedrest...at 23 weeks, I delivered our twins via c-section. That first day was scary...the whole second day was a dream...I was a mom to twin boys. I couldn't imagine anything ruining my happiness. I was on top of the world, even though my babies had an extremely low chance of survival. I never thought...in a million years that anything horrible could happen...it did. By the end of the third day, our world shattered into a million pieces...Our Nicholas passed away. It was such an out of body experience of every emotion possible...every raw feeling ripping through every inch of my soul. How could we...I...have a child that passed a way? It's a feeling that I feel over and over again thanks solely to my diagnosis of PTSD...yes, even after almost 6 years, I am suffering from a horrible mental issue that gives a person such vivid flashbacks...I can smell, feel, and see everything as it happened on that evening. Then, to go 129 days in NICU with our surviving twin...yes, the roller coaster ride was a very hilly one. One with a heart surgery, a NEC scare, many, many infections, a PICC line, to many numerous blood and platelet transfusions...and much, much more.

The worrying has not stopped in the NICU like I hoped or thought. There have been tons of hospital stays (knock on wood...not too many this year), diagnosises of microcephaly, Cerebellar hypoplacia, a possible rare chromosome issue, being put on the autism spectum, global delays, feeding tubes, hearing loss/hearing aids, muscle tone issues, eye surgeries, being non-verbal, severe lung problems which have landed him in the PICU...and epilepsy. 
Every day consists of medications, tube feeds, diaper changes (yes...at almost 6...and let me tell you...it's not fun), doctor and therapy appointments, a lot of repetition of...everything. And more anxiety and stress. 
The anxiety and stress gets worse when I sit and think of what the future holds...something that is a no no when ou have a chronically ill/special needs child. But I'm only human. I do think of the future..and it's scary. But on the other hand...he has come a long way and has proven that he is a fighter! The doctors told us that he may never walk...well...thanks to our baby #8...Gina...our rainbow surprise baby...she has been Kenny's surrogate twin. Helping fill the void where Nick should have been for her big brother Kenny. We went to a school skating party and she wanted to skate...well, Kenny saw that she has skates on and really wanted to try, so we got a pair of Fishe-Price skates from the rental booth (yes, they do carry skates for kids that have special needs), and he loved them! 

My little 1.7 pound miracle was actually skating!

So, the roller coaster ride will continue, the worrying never stops. At every runny nose. at every cough, the scary ride teeters at the top of a hill that makes me want to close my eyes tight and find my happy place, but I know that he lasting effects of having preemies and micro preemies...and even losing a preemie will always be my ride in life.
So happy Parents of Preemies Day! To all my readers that have premature children or even if you know of a preemie parent...talk about it. It helps. It makes the stresses of the birth, the NICU stay and  beyond that much easier.