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.