Sunday Mornings with Hayden--Can we go home yet?

After the initial shock of learning Hayden had Downs, all I wanted to do was take my baby home. I did not want anymore helpful doctors and nurses telling me about this test or that test that he would need to determine if he had heart defects, digestive issues or whatever. The statistics they were throwing at me about what probable problems come along with Down Syndrome were varied,  many, and scary! I wanted to grab him and hide, preferably in my own bed where the world could not bother us. I had absolute faith that he had none of these medical issues requiring surgery. I knew he was fine, but Hayden was not so cooperative.
 He had to stay in the hospital for the first week as he could not maintain his body temp. He was also jaundice and needed to be wrapped tight in a special lighted blanket. The bigger problem and most stressful for me was his weight loss. He had dropped down to 6lbs within a few days after birth and they would not let him go home until he gained 6oz. It doesn't seem like much, but it took days for him to do this! He wasn't getting the hang of nursing, but I would not give up. This seemed like the most important thing in the world to me. A deal breaker. I would have practically no sleep till this problem was solved.
Another problem.... he failed his car seat test. What is that you ask? The "car seat challenge" assesses whether preterm infants who are ready for discharge home are prone to episodes of apnoea (stopping breathing), bradycardia (slow heart rate), or desaturation (low oxygen levels) when seated in their car seat. This met we could not take him home until he passed!
Also, Hayden failed his newborn hearing test. Flat line in both ears! This really freaked me out. I could not stop thinking how bad things were going to suck if he was deaf on top of whatever other challenges he was going to face in life.
I remember crying in the shower every day. This was the best place I could find to let all my grief out. I did not want to cry in front of the hospital staff, or my family. I thought they would think I was weak, a terrible mother.  Or worse, look at me with pity in their eyes. That was unacceptable. I also didn't want to scare my other kids. Their father had explained about Hayden to them. I am not sure how much they understood. Mostly Glenn was privy to my tears.

Big Brother Ryan

Big Brother Dylan

Big sister Kyra

Big bother Liam

My favorite "schmoopi" face

After eight days of wondering if we were ever going to take Hayden home, finally everything was a go.
Glenn had come up to the hospital everyday with Liam who was two and a half at the time. Liam could not wait to have his new little brother home! HE WAS SO HAPPY!

Liam wanted Hayden to sleep in his bed.

I was determined to nurse him as I had done with the other four.  Due to his lower muscle tone, staying latched on was a problem.  It was completely frustrating to me! I was an experienced nurser and was not going to give this part of motherhood up!! I had to pump every two hours and then feed him a bottle. I did this for three long, long weeks! Sleep was not an option for me. "Feed the baby" was all I could think about. During this time, I was trying as many different  methods for getting Hayden to stay latched on as I could find. A nursing consultant we went to see at the hospital when he was almost three weeks old gave me this thin, clear, silicone nipple to put over mine to see if it would give him a little more something for his lips to grip on to. BINGO!! That little piece of plastic made all the difference in the world! We used it for a couple of weeks until he got the hang of it, and then he nursed like a champ till he was two and a half!  

Glenn at feeding  time

 I know now that I was grieving. Grieving the loss of the baby boy I didn't have. I got the wrong one. Not the one I was suppose to get. I had to come to terms with that before I could fully focus on the baby boy in front of me. I was going through the motions of what I knew I had to do for his survival, but at the same time I kept thinking I don't want this. I don't want this one. That made me feel just awful inside. I'm crying as I write this. It is just so awful to admit even to myself. I really hope this helps someone out there know that they are not alone and that this is a normal reaction. AND, quite temporary! The next emotion I remember having was an overwhelming need to love and protect this child at all costs. I was going to keep him in a bubble where no one would ever be able to hurt him. It would be just me and him together forever. I would love him to the max as only a mother can. He is far from being kept in a bubble, but I am the proudest mom on the planet of all my kids. And Hayden is my shinning star.

Hayden at 7 months

 

***About the Hearing Issue***
I found myself doing all kinds of "tests"on him. He would lay quietly looking around and I would clap my hands together behind him as loud as I could to see if I could startle him. Then I would try to decipher any movement he might have made. Drove myself nutty! Probably him too!
The first couple of  years of testing every few month with an audiologist seemed to leave us still questioning his ability to hear, but then he had an ABR (Auditory Brainstem Response) test and passed with flying colors! Now his hearing is just selective like the other kids.

Sunday Mornings with Hayden --"What did he say?"

Have you ever seen a movie where a person receives bad news and their mind starts reeling and the voice of the person giving the bad news is faded out till you can't hear it?  Everything is just swirling around and all sense of space and time are lost. This was the exact feeling I had when our pediatrician came in to my room after Hayden was born and said..."We think your son may have Down Syndrome." He went on to tell us why he thought that, but I never heard any of it. The bottom had fallen out of my world. I was falling through space. Total blackness. No sound. 
I am not sure how long that lasted. He was born around 7am on a Friday morning, The next time I got to hold him was around 10 pm that night.  Hayden spent the day in an oxygen tent.  I spent the day with all kinds of people from various agencies stopping by to give me info and invite me to join support groups.
For the record, I never read one piece of paper from out of the stack of large manila envelopes that were left for me and I never joined a group. Just not my style. And with five kids, who has time? I'm sure they all met well, but I felt like these helpful folks were granting me membership to some kind of exclusive club that I had no interest in ever joining.  I just wanted to be left alone to. Life as I knew it had just ended. I remember a poem about a trip to Holland that kept showing up that made me want to scream! I know this all sounds very dramatic. It is hard for me to go back to that day and put my feelings into words with out sounding dramatic. Unless you have been through it, it might be hard to understand. I am so far from those feelings now that it is hard to think that I actually felt that way!
The worst part of that first day was the overwhelming feeling of lose. The joy I had felt from giving birth to a new life earlier that morning had been replaced with a feeling of deep sadness. Like someone was dead instead of born.  Nothing made any sense.

And yet, it all made perfect sense.  I didn't need genetic testing to prove it was true. I knew it was true. When my son was first placed in my arms, newly born and covered in goo, the first words out of my mouth were, " He doesn't look like the other kids!" He was smaller for one thing. At barely 7 lbs, he seemed tiny compared to the other babies I had given birth to in the 8 to 9 pound range. In his defense he was born three weeks early. None of the others where early. I looked at him and I knew. 
My family has a lot of experience with people with  Down Syndrome. My mom's brother, Uncle Danny, had Downs. He was born in 1960 with a severe heart defect. Dan passed away from complications after open heart surgery when he was 15. I was 8.  It was to say the least, the most traumatic event of my childhood. My mom and her sister cried endlessly for months. I can't remember anything being so sad or feeling so hopeless. 
About a year later, my grandparents became foster parents to another boy with the Downs that they had met when Danny was in a New York City hospital for the heart surgery. Dan and Ron were roommates.  Ron was having a tumor removed from his brain. He had no family there to visit him. Dan had asked if Ron could come live with them. My grandparents somehow remembered the request after the fog of grief had lifted. They embarked on a quest to find Ron. They new his name, but had no idea where he might live. As fate would have it, he was living right at the Syracuse Developmental Center in our own back yard! The first time my grandma went to visit him there, Ron exclaimed, "Mom, you came!" He had been waiting for them to find him. Ron became my uncle. 
My Aunt Joyce became a social worker and got a job at the SDC to help others like Ron find families to live with. She just retired after 35 years!! My mom was an RN there for 20 years. I also worked for the SDC  running group homes for 10 years! I have other cousins who do the same still! 
To top it all off, my husband Glenn, had Aunt Patti, his dads sister. She moved in with Glenn's family when he was 17. His grandmother had died and Patti had no where else to go. She passed away this past November at the age of 68.

Interesting fact....my uncle and Glenn's aunt had the same birthday.
WAS I DESTINED TO HAVE A CHILD WITH DOWNS????
I think so!

What Is This Blog About Anyway?

When I tell my friends about the craziness that goes on in my life, they always say, "You should write a book!". That just sounds like it would be hard and take way too much time. I have never thought of myself as a writer, only a reader. A good friend mentioned blogging. I really had no idea what that was. It took me a few years to even look into it. And then a couple more years of thinking about it before deciding to give it a try.

Most of my reasons for wanting to start a blog have to do with my son Hayden. He was born with Down Syndrome six and a half years ago. This was totally unexpected. It raised many emotions that I had trouble sorting out. I wondered if other moms in similar situations felt the same way. I want to share more about those first months with Hayden and hopefully help some moms out there who are going through the mixed feelings of having a baby with a disability. Everyday since has been a new adventure with him. He truly amazes me with his determination and wit! He has become the center of our family. Everyone he meets is captivated by his charm. No lie! The kid has swagger as my older children would say.

The rest of my reasons for starting this are the countless other things that happen around here and the millions of thoughts that are floating aimlessly around in my head. I need to get them out! I have many interests and talents of my own and after nearly 19 years of motherhood, have a NEED to find out who I am.  I have been a "stay at home mom" for 12 years. We are not rich, so this has met that I have had to be creative with spending and find ways to bring in extra income. I have babysat for many families over the years. Oh wait, I mean "provided Child Care". This has been the best way to stay home and still make some money that I have found. My other at home job has been  my ebay store. I have sold many things my kids have outgrown and that we just don't need anymore. People also bring me their junk to sell for them for a commission.
I am now focusing on starting an interior painting business. I LOVE TO PAINT!  Walls, furniture, anything really. I feel like I have found my passion, just haven't found how to make real money at it yet. I have had four paying painting jobs so far.  Since I took a break for Christmas, I have had trouble getting back to it. I might get around to explaining why that is in future posts.
I have always enjoyed painting. I also enjoy knitting, crocheting, beading, cross-stitching, baking and lots more stuff to a lesser degree.
I am trying to decide what my "voice" sounds like in a blog. Should I sensor myself? Or let it all come out like I actually think or say it? I don't have a super trash mouth or anything, but I might have an f-bomb flying about from time to time. I am leaning toward just letting it sound like me telling a friend about whatever it is rather than like reading a magazine article in a doctors office.
Now that we know what this blog is going to be about, my next post will be about the first reactions I had upon hearing that Hayden had Downs. I think I will just go from there and see where it leads.