Why me? Why now? - Curtis' Story

I am writing this to share my point of view on Gavin’s birth.  Not to beat a dead horse, but most people feel for the mother and forget that the father goes through something very difficult as well.  So where do I begin?  I’m at the hospital the morning before my baby boy is supposed to be delivered. I’m sitting on the couch with my bag of ice down my pants because I just had gotten snipped (Vasectomy) the day before.  At the time we thought this was a great idea since we had help for the other two boys and I would be able to rest in the hospital with lots of ice.  As the day goes on I’m very anxious and excited about meeting my new baby and then the time finally arrives. When Elizabeth pushes him out, my first thought was what’s wrong with his face? I thought back to when Zachary was born and he had come out with his head shaped like a cone.  I asked the doctor “what’s wrong with his head, is it going to stay like that forever?” Then I was informed that this is what happens when they move through the birth canal.  Gavin came out head up so his forehead looked very coned shaped.  The more I looked at Gavin the more I thought he had something wrong with him. I thought possibly it could be Down syndrome, I mean, I’ve heard about Ds, but never really knew what it was. I really didn’t say much to Liz about it when she asked because I was unsure.  His face was really swollen, black and blue so it was hard to tell what was going on.

Elizabeth is a really big worrier, so I kept re-assuring her that nothing was wrong because if I told her that I thought something was wrong she would probably freak out, which she did anyway.  The entire time in the hospital baby Gav wasn’t around much due to his jaundice levels being high, but every time a nurse came by I would ask, just to get reassurance that nothing was wrong with my son. I think they knew something was wrong but weren’t allowed to say anything. I felt like they were all thinking something was wrong, but wouldn’t just say it.  Then the day we were being discharged, one doctor dropped the bomb on us and said she was leaning towards 75% that he has Ds.  We were like “woah! What? how can you be so sure? The first doctor that had examined him said that he had no signs of Ds , except for the eyes.  The last day at the hospital Liz’s sisters and my nieces showed up. They were all extremely positive and said “Oh, there is nothing wrong with him, he looks so normal, there is no way he has Ds.” We had the reassurance that we wanted.

When we left the hospital we decided to have his blood cord test for Ds, just to have peace of mind and they said it would be 1 to 2 weeks before we got the results. That week was probably the longest, most emotional week of my life, besides losing my father when I was young.  That whole week Liz did so much research on Ds that she could probably be an expert on it, but I didn’t.  I was in denial and figured I would find out more if it were necessary. I thought Down syndrome was a severe form of mental illness. I thought it meant he would basically be a vegetable, living in a wheelchair, and not able to care for himself at all.   So….the phone call finally came and my heart was pumping out of my chest, palms sweating and nervous as can be. Then the doc said the words Trisomy 21 and that’s all I heard. The rest of the conversation was a blur. Everything she said I  answered with yeah, yeah, yeah and nothing else.  My head sank into my palms and I didn’t know how to feel.  I wanted to cry but I knew I couldn’t because I had to be strong for Liz and the boy’s.  I didn’t want to show her that I was weak because I didn’t think she could handle it if she knew I was breaking down.

As the week went on all I could think, all the time was why me? Again? Haven’t I been through enough? Shed enough tears when I lost my father?  Why this, why now, how come me again, are you serious? How am I going to handle this? Those were all the questions I kept thinking over and over again.  I have never dealt with anything like this before. I mean, I have two healthy little boys, why does Gav have to be different?  Why does any child have to be born so different or struggle in life? What did those precious little children do to deserve this?  Driving to work a couple times during that week I cried as I thought about my little man and everything he is going to have to go through. I really didn’t know how to handle it. Then I started to focus on the positives. With all of Elizabeth’s research, she had found so many other children with Ds that had major surgeries due to heart issues and digestive issues.  I began to feel extremely thankful that he’s healthy, home with us and not in the hospital.  Was I still upset? Yeah of course I was! But it could be so much worse…. My heart and prayers goes out to those families that have dealt with multiple surgeries and loss. I can’t imagine.

Fast forward 8 weeks and I am now just focusing on all the positives and living day to day with my little man, Gav, and my two other little men. I try not to think of anything negative and it’s slowly getting better. I have learned so much from that first week and now am educated on what Ds is, and that Gav will be able to do the same things as Zachary and Lukas, he will just do them at a slower pace. We, as a family have no idea what the future holds. All we have is the time here and now. I keep telling Elizabeth, let’s focus on the positives and live day to day and deal with therapies in the future. “Let’s love our little boys and spend as much time with them as we can because they grow up so fast.”

Curtis Woods

"3 Under The Age of 4? Wow, You Must Have Your Hands Full"

I never planned on having 3 children. We talked about the possibilities but we always said we wanted 2.  We also never planned on having 3 so close together, but things happen and apparently God had different plans then our plans once again.  Have you ever been in...hmm lets say Walmart, and you are behind a lady with multiple young children? They are screaming, hitting each other, they don't have shoes on...the mom looks like she has been hit by a train and its just complete chaos. You think to yourself that poor woman... does she not know what birth control is?  Does she not discipline? Yes! I am sure most of us have thought something similar at some point in our lives.  Well fast forward a few years and I am there!  I am eating every single word or thought that I have ever had about moms with multiple young children.  I can honestly say that I have no idea how moms with multiple children do it.   I could barely handle the two I had before Gavin was born. Now that he is here, I am doing all I can to stay afloat. Its not that I don't want to be supermom, but sometimes when I look at these moms with super powers that have all their kids in matching outfits with their initials monogrammed and their hair is done, and their houses are immaculate inside and then they look amazing on top of it, I think...maybe I am just not cut out for this.  I like to joke that at least we are all alive at the end of the day and that's what's important.

Just to get a good picture in your mind of what a typical day looks like for me: 

After being up most of the night...the only thing that gets me out of the bed in the morning is the thought of a huge cup of coffee, or the screaming kids, or the crying baby who wants to eat. but mostly the coffee. Once I'm up its rush rush rush to get Zachary to preschool. With that being said...i take him in my pajamas 9 times out of 10.  For the 3 hours that I am home I am changing diapers, nursing Gavin, or cleaning up after Lukas.  Lukas is my busy, stubborn, 2nd born child.  He gets into EVERYTHING! Seriously the kid does not play with many toys. His idea of fun is climbing up on the counters, the table, or the pantry shelves.  I try to bounce back and forth between him and Gavin but its close to impossible to watch Lukas 24/7.

So that is usually when most of the incidences happen..usually this includes but not limited to him throwing a whole bowl of dog food that was just soaked in the dog water all over the kitchen. Or when he pushes the kitchen chairs all over the house to get what he can't reach and break it.  Or when he gets the bag of pretzels out of the pantry and dumps the whole bag, salt and all, on the floor.  This morning I found him sitting on the kitchen counter, going through the bag of clementines, biting into them and throwing them when he discovers that the peel does not taste so good. I took him off that counter close to 100 times and he just goes right back to it. So at that point I'm so over wrestling him while I also have a baby literally attached to me, that I let him do it.  Then this way its more of a clean up game later.  

 

Once Zachary is home from preschool, the fun continues with " I'm hungry, I'm thirsty, I'm bored, poor me I have no one to play with." After I get all those demands met, 4 o 'clock comes rolling around which is my least favorite time of the day. It never fails... everyday at this time (which I like to call "the witching hour") as I start to make dinner, Lukas decides to have a meltdown.  Maybe I am alone on this or maybe it is a universal thing with most kids around dinner time.  How do you make dinner when you have a 1 yr old screaming, crying, and pulling on your pants?  Curtis tells me to ignore him, but how do you ignore someone who is hanging on to you, screaming your name?

Just as I think my day is almost over, I get the kids in the bathtub thinking this is the second to last stop before I get to have a nice date with some dessert and my couch until something unexpected happens...just like last night.  The bathtub was almost filled, the boys had climbed it, and I was undressing Gavin to put him in his own little tub, when "Ahhh!! mom! poop!! Lukas pooped!!" Sure enough, there was Lukas sitting in the poopy water trying to play with it. Bath time quickly turned into shower time.

Silly boys

The reason I wanted to share this with you all is because right now Gavin is an infant...he is no different than any other infant. He eats, sleeps and poops just like any other baby. He is not behind or ahead he's a "normal" baby.  However, our journey has just begun...pretty soon all his therapies will start and as he grows, it will become more and more apparent that he is different than our other children.  I was already freaking out at the thought of having 3 children under the age of 4 before even knowing of his diagnosis. I am extremely terrified! How am I supposed to raise 3 boys and one having a disability?? With all that I already do, how am I going to find time to squeeze therapy sessions in? and doctors appointments? I become exhausted and overwhelmed just thinking about the future of my sweet little boy. Will he always feel that he has to compete with his older brothers or feel bad that he may not be able to do the things they do? What if other kids make fun of him? Will he be accepted? Will he be able to live independently? What about a school? Job? Who will be here to take care of him after we are gone? These questions flood my head on a daily basis.

Sweet baby Gavin

I keep hearing from people that they are surprised I am handling this so well, and that I seem very strong.  Well I am here to tell you that I am NOT strong, and I am not handling this very well, but I have no other choice... I just do it...I handle it the best I can.  I have 3 little people who look up to me and NEED ME, so I have to try and be strong for them.  

Love these boys

So let me wrap things up there....Is having 3 boys incredibly chaotic? Yes it is... Am I exhausted ALL the time? Yes I am...Do they make me want to hide in a closet, rip out my hair, and drink a whole bottle of wine sometimes? Yes they do! LOL but I love being a mom, and I love my boys with all my heart, and I wouldn't trade this crazy life for anything in the world. As much as I am scared for the future and the hard times that are coming,  I am sure as heck going to try my best to succeed as the best mom I can be to these boys, disability or not.  I don't need to be supermom, I just need to love and care for them and trust that God will take care of the rest.

Saw this and thought it was hilarious and also appropriate for this post

***Side Note*** I did not create this blog to review products but if I find something that will make my life a little easier or any busy moms life easier, I will definitely share with you all.

Introducing...... The Electrolux 2 in 1 CORDLESS vacuum. The key word here is cordless. I don't know about you, but I take my vacuum out probably 4 times a day, or after every meal and snack. Its not that I hate vacuuming, I just hate the process of taking it out, plugging it in, wrapping the cord back up, etc etc etc... There are many different kinds of cordless vacuums that I am sure work just fine but I decided to go with this 2 in 1 from Target and I LOVE it.  It has a stand where you recharge it, and a part of it comes off and acts as a dust buster.  Also as a bonus, Target has it on sale right now for $79.99 and if you use your red card you get an additional 5% off. You can access that by clicking here:
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Update

This post is to catch you all up to date on all the doctors appointments we have had so far and how Gavin is doing in general... to date he has seen a genetic counselor, a cardiologist, an audiologist and his regular pediatrician all within the last 6 weeks!

We had a great report from the cardiologist and will not have to go back for any future appointments....praise the Lord!

 Gavin failed his hearing test in the hospital when he was born so we were referred to an audiologist for further testing.  His appointment was 2 weeks ago and he still did not pass :( The test showed that his ears are filled with fluid.  This can be a normal thing and drain by itself or he will have to get tubes put in when he is 6 months old.  We have another appointment at the end of this month where they will test and see if they can bypass the fluid and see if there are any issues with his inner ear.  We are very optimistic that he doesn't have permanent hearing loss since he does startle at loud noises.  The audiologist believes that the fluid is just creating a buffer and everything sounds muffled to him.

He has no problems with nursing, and is actually doing extremely well.... maybe even a little too well (he is getting to be quite the little chunker).

In a few weeks we are hoping to start early intervention therapies.  These will include physical therapy, occupational therapy, and eventually speech therapy.

For now we are just trying to enjoy our sweet little baby boy.

                                                                                      Newborn photos by Kristen Pace Photography


Oh! I almost forgot...how are Zachary and Lukas adjusting to their new little brother? They are doing just fine.  Zachary is such a great little helper... bringing me diapers and wipes, getting me water, and giving Gavin lots of hugs and kisses.  Lukas has been a little jealous of having to share mommy with someone else but he is becoming more welcoming everyday and loves to give "baby" kisses as well.

Zachary is such a proud big bro

Lukas loving on his "baby"

The Day Our Lives Changed Forever

Thinking back to the time that we were waiting on the results of the test is very upsetting to me.  So many emotions mixed with lack of sleep is not the best combo.  Most of what I remember was lots of tears and lots of researching.  I probably "googled" most of the day, everyday.  We played the whole "he's got it, no he doesn't, yes he does, no he doesn't" game the entire week.  I actually remember being very upset because I feel like I was robbed.  I was robbed of the joy and happiness you feel when you first give birth.  I wasn't able to enjoy my brand new baby because every time I looked at him, all I could think was DOWN SYNDROME.  Since there are many signs of Down Syndrome, and because Gavin only had a few of those (small ears, small slanted eyes, brushfield spots in his eyes), it was difficult to say either way.  The doctors were not sure even sure one way or the other. There was one doctor who specializes in Down Syndrome at our ped's office who looked him over and said he was positive he DID NOT have it because his muscle tone is pretty good for an infant.  The only way of knowing 100% was this blood test we were waiting on.  All we could do was pray and pray and pray some more.  

It was a Friday, and I had been out shopping with my mom and Gavin, when I saw I had a voicemail. It was the pediatrician and she said she had the results.  I instantly felt sick and our shopping trip was cut short so we could rush home.  I called and left a message for her to call us back since she was with patients.  When the phone rang, and I saw the number, I threw the phone to Curtis and told him to answer because I just could not do it.  He went into the office and closed the door.  I sat in our living room shaking.  My heart was beating so loud I could hear it in my ears. My palms were sweaty and I felt like I was about to pass out.  I wanted so bad for him to come out of that office with a huge smile on his face and tell me that everything was fine, but he didn't.  After what seemed like an eternity, I opened the office door and there sat Curtis, all bent over with his head in his hands.  I knew right then and fell to the floor. "Why me? Why me God? Why did you choose me to have a child with a disability?" I felt like God was punishing for something.  Being only 29 years old when I became pregnant means that I had approximately 1 out of 1200 chances of having a child with down syndrome.  So yes.... I was very confused as to why I was chosen.  On top of all those feelings I felt like I was mourning. Did my baby die? NO!!! but to be completely honest, I was hurt and angry and I felt like I had actually lost my child.  I was mourning the loss of him.  My vision of this beautiful, healthy, "normal" baby was gone, poof, just like that.

I have learned so much from that day.  Is this what we had planned? No, but sometimes our plans are not God's plans and we have to accept that.  I've been struggling with this for awhile now but little by little I am understanding that Down Syndrome is not a bad thing, it's just different.  Our lives are not over...we are just taking another path.  I read a story that really clarified things for me and opened my eyes to understanding what this meant. It's called Welcome to Holland, by Emily Perl Kingsley and you can read it here:  http://www.ndss.org/Resources/New-Expectant-Parents/A-Parents-Perspective/#sthash.dXZyHwRN

Sometimes I get so caught up in the diagnosis that I forget to look at the big picture here.  Although he has this diagnosis, he is a beautiful, healthy baby boy, with no major health conditions. This is something that I am extremely grateful for. A little under half of children born with Down Syndrome have some sort of heart defect...some being so major they require open heart surgery.  A few days before Christmas we met with the cardiologist and Gavin had an EKG which showed that his heart was perfect.  This was the best Christmas present we could ever ask for.

Merry Christmas (a little late) from our family to yours

                                                                                

***

©1987 BY EMILY PERL KINGSLEY.

- See more at: http://www.ndss.org/Resources/New-Expectant-Parents/A-Parents-Perspective/#sthash.dXZyHwRN.dpuf

***

©1987 BY EMILY PERL KINGSLEY.

- See more at: http://www.ndss.org/Resources/New-Expectant-Parents/A-Parents-Perspective/#sthash.dXZyHwRN.dpuf

Gavin's Birth Story (Read first)

Let me start off by saying that I am not a woman that likes to be pregnant.  Did I hate being pregnant with my first two sons??? No, but I STRONGLY disliked it.  This last time I can honestly say that I was completely miserable. There were no serious life threatening complications, but to me they were close enough.  I had all the usual pregnancy symptoms: nausea, headaches, varicose veins, but on top of those I had severe pubic symphysis dysfunction(your pubic bone separates more than its supposed to) where I could barely walk.  I was borderline diabetic so I had to watch everything I ate (extremely hard to do, if you know how much I love sugar), and Gavin was in a breech position.  So after having two vaginal deliveries, I would be having a c-section with my last. My doctor suggested that I try a version. This is where they manually try to manipulate the baby from the outside, and try to turn him head down. Basically one doctor pushes and the other one pulls.  It feels like someone is ripping your insides out..no joke.  The version was successful and I was thrilled since the success rate is not very good.  I thought, finally,  something is going my way.

One week later I was induced, which was the longest week of my life since I was scared to let my body be in any other position except an upright one, so he wouldn't turn around again.  Finally it was go time and we were in the hospital at 6am starting the pitocin drip.  It ended up being a very emotional day. His heart rate kept dropping and then it would stabilize and then drop again. The nurse would flip me onto my side in hopes that I was just lying on his umbilical cord. Then it would drop suddenly again and they would turn off the pitocin and give him a break. I had to wear an oxygen mask to hopefully give him some more oxygen inside.  It felt like 1 step forward and 2 back. It was very scary not knowing if at any time I would have to be rushed away for an emergency c-section. This continued all day.  Even after my water broke, the little booger was still so far up and would not drop down! My doctor checked and said his head was lodged and stuck on my pubic bone and that was the reason for the hold up. She said we should try and push to see if he would dis-lodge. 2 pushes later, he shot out.

The first time they laid him up on top of me I had a very strange feeling. This wasn't my baby. Not the baby I imagined!  He was extremely swollen, one side of his face looked like someone had beat him it was purple and blue. His forehead protruded and his face was so swollen that I could barely see his eyes.  I kept asking over and over again, "is there something wrong with him?? He is not crying!" But they kept reassuring me that everything was fine... he was in a face up presentation when he came out so it was normal to look that way. Besides the swelling he was perfectly healthy.

Here he is all red and swollen

                                                     

His forehead was protruding and extremely black and blue

                                       

This is my exhausted, worried, know something is wrong face

 And here he is Gavin Xavier Woods, weighing in at 7lbs 2 oz. 19.5 inches long

The next day his billirubin shot up pretty quickly and they wanted him under the lights for 24 hours. I was only able to try and nurse him for 30 minutes when they brought him to me every 3 hours. Under this demand it is almost impossible to feed a jaundiced, sleeping newborn.  This was very frustrating to me but I kept thinking to myself...tomorrow we will be going home. Tomorrow comes (Thanksgiving Day) and no turkey for me :( The doc wants us to stay one more night.  The next day is sort of a blur to me.... We were waiting to be discharged and in walks the pediatrician to tell us that his levels had dropped and that we were free to go. We were so ready to go home and see our other boys, when all of a sudden she continues with.... "However, I think you should consider having Gavin tested. He is showing a few signs of Down Syndrome."  My heart drops....Can you repeat that? She continues.. "I am about 50/50 and leaning more towards 75% that he has it." The tears started flowing down my face.  I had no words (which is rare for me)...all I could do was cry.  I felt myself become anxious and worrisome. I wanted to throw up.  She came over patted me on my shoulder and said that she knows it must be hard and would I like something to calm me down. "Yes Please!" I do not remember a lot after this.  My sisters and nieces came to bring me home and to just be there with me. The doctor said they would send out a blood sample from his umbilical cord and we should here back within 10 days. That was that...we left not knowing what was going on or what we should be feeling or what was wrong/if anything, with our son.

                                          This was the day we came home from the hospital

The next 10 days were the longest, confusing, most terrifying days of our lives.....