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Last year
- Feb 4, 2010 at 12:55 AM
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- Comments (8) Total Views (371) Everyone can see this journal post.
I was looking at my journal today and I noticed last year around this time I was informed that my tiny unborn baby had fluid around his heart. I remember being very worried and searched the internet in a paranoid frenzy as I always do when I think something is wrong with one of my babies. I know delving into the horrors the internet freely provides is a bad idea but it's a resource my worried mind can't seem to let go.
I remember what I found said that one of the leading causes of a baby having fluid around their heart is Down Syndrome. I told my mother this but told her well we don't have to worry about that one my AFP was normal. Then I went to the ultrasound and they told me the fluid was a very small amount and he looked perfect. The doctor said he's measuring three weeks behind but not to worry because you have small babies.
Ronan was born a few months later. Right after he was born my husband walked over to take pictures of them weighing him. He said "he looks funny." I thought he was being rude and told him to be nice. Ronan had breathing problems no one noticed but me. I kept insiting they look at him closer but no one listened and they all left. Finally when he turned purple and passed out in my arms my husband made them come back in. They took him to the nursery to give him oxygen. They called down a short time later and told me they were taking him to the NICU because he needed more oxygen than they were allowed to give. They told me not to worry he was fine just born a little early. I think that's why when they called me up to the NICU to give me the news I felt that someone had hit me with a ton of bricks.
The doctor said all of it quickly. "We think your baby has Down Syndrome." I immediatly said "No, he doesn't they tested him and it was normal." She said "You mean the AFP." I nodded and she continued. "That's not always acurate. " That was the moment I regretted telling the nurse I didn't need the wheel chair. The room became very foggy as the doctor continued. "His esophagus isn't connected and he has to have surgery, also we think he has a heart condition and he may need to go on the ventilator because he's not breathing well." I had just given birth to this baby a few hours ago and this doctor wouldn't stop giving me bad news like it was nothing. Tears started pouring. I couldn't control them there must have been at least ten nurses and doctors around my baby but I couldn't control the tears. Luckily my nurse who'd come up with me grabbed me in a big hug. I'm not sure if she saw my face go white or felt compelled to comfort my distress but I'm grateful to her. After going back to my room and telling my husband what he already knew. It was what he was trying to tell me before. I cried until about five in the morning and then finally sleep won.
The next morning I remember walking into the NICU the nurse told me they all had been wondering if I had any prenatal care with Ronan. I remember it being a stab in my heart like they were blaming me for not taking care of him that somehow this was my fault because I had done something wrong. Of course at the time I was just emotionally drained but then after I answered the question politely it turned to anger inside. Why hadn't they caught anything being wrong with him? I had done everything right . I never smoked, drank or took drugs. I tried to eat right and take my prenatals. why was my baby so sick? Why had my doctor failed me and not caught any of this?
Ronan is now eight months old. He spent 38 days in the NICU, had his esophagus repaired at one day old, has a hole in his heart and we just found out he can't hear very well but we're hoping ear tubes will fix the issue. I remember how scary those first few days were how not knowing what Down Syndrome meant for my tiny baby. I realize now I needed the first few days to grieve my old self and I'm better for the fact I took those days.
The genetics nursed asked me the other day how I was coping with Ronan's diagnosis. I remember thinking coping with his diagnosis seemed so foreign all these months later. "Oh you mean with him having Down Syndrome, I told her I cried the first couple of days was angry a couple more then got serious about what I needed to do for my son." Now I am no longer coping with Ronan's diagnosis of Down Syndrome it is just something I know about my little boy. Sure we have changes such as therapists or doctors visits or I change the way I do certain thing because he has Down Syndrome. And I will do everything in my power to fight for my baby and help him excel and become the man he wants to be despite a disability. But I have gotten to know my son, his smile, his laughter, the way he touches my mouth so I'll kiss hand and then giggles when I do. So yes Ronan has Down Syndrome but Ronan is first and foremost Ronan my baby boy. I have been forever changed by a 19lb, 8 month old baby boy and I never wish to go back.
Comments:
He is ADORABLE!!!!!!
He is adorable! My 21 month old, also with DS, is only about 19 pounds! Love your little man's chubby cheeks. And your story took me back to my son's birth....:)
He is so cute! I just wanna squeeze those cheeks.
Your boy is a little treasure! 8 Months! What a sweetpea. You must be so proud. How lucky and good his life will be with you as his mom. Thank you for sharing this journal. I like the way you write :)
He is adorable!
I would just love to make little Ro-Ro a cap if you want one!!!
He's such a little cutie and I love the pic at the bottom. I wish i could get my kids to love on each other and be that sweet.
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Mila Kunis' Weight Gain Is No Cause for Concern
He's adorable. I'm so glad he got YOU as a Mom! :-) I hope the tubes do help with Ronan's hearing. I'll be saying a prayer!
- Lb128f
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