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Originally Posted by eilonwy  Lilsparrow-- would you mind posting a bit more about your son's birth & development? After two years, I'd be concerned about something else going on; As you said, most premature infants (all but the very youngest) are developing more normally by age two.
That said, while my Bella is fairly average for two, she's so different from her siblings that it doesn't quite *feel* average to me. She is, however, making progress.. and I suppose that's the most important thing.  |
Bean was very skinny, and wrinkled. he weighed six pounds, but he was VERY skinny. And he had a different look about him then my other three, he looked *not done.* When my visitors saw him, everyone said, "Awwwww," but not in a "he's so cute" kind of way. More of a "poooooor little thing." His look evoked pity. He looked very very vulnerable, like a baby bird.
I had mentioned in the hospital, that I was neglected and abused. In one instance, after two days of laying on the same bloody sheets, (they had by that time gathered around my feet) and I was lying directly on the plastic mattress cover. Bean had a lot of trouble latching because he was very sleepy and weak. I was on pain medicine because of my surgery and I was having trouble holding on to him because of the slippery mattress cover. I needed something with more grip because the one tiny pillow I had kept slipping. My nurse button was being ignored as usual. Bean was crying and I was crying because I couldn't feed him. Finally a nurse came in on her rounds to see if the baby had eaten. SOBBING, I told her no, that I couldn't feed him because of the sheets, and I needed another pillow, the baby kept slipping. She said, "Okay, I'll mark that on my chart, and she NEVER came back!!
I felt abandoned and helpless and powerless to feed my baby, it was a horrible feeling and one I can only describe as traumatizing. I have never felt so alone in my life. I decided that I was going home the next day. My then dd6 could have taken care of me better. She would have at least got me a pillow.
I informed the next day nurse, that I was leaving AMA. She said that I could leave but that I couldn't take the baby because according to the chart he WASN'T EATING ENOUGH. I don't remember exactly what I said, but I do know I was primal, and when I was done my speech of rage, she did not argue with me anymore, but did convince me to stay through the next morning so the doctor could sign me out. BIG MISTAKE. That night, the evil nurses come out at night I suppose, I was left without pain medicine, AGAIN. I had to walk to the nurses lounge to find a nurse for my previous dose. This time I woke up two hours, after I was supposed to get my next dose. The pain from the c-section was EXCRUCIATING! After ignoring my button forever, the nurse came in and exasperatedly asked me what was the problem. I told her I needed my pain medicine, and complained that it wasn't given to me on time. She responded that the prescription said "if needed." I told her, ( I was really pissed), "I just got my f*2#$ abdomen sliced open ... ASSUME I need it!" So, she went to get the medicine, plopped it in my hand and left. No drink to take it with, nothing. So, I called her back and she brought me a drink and set it on the other side of the room! Well, my husband who before this didn't believe me, happened to be there sleeping (we thought) in the recliner, and he heard and saw the whole thing. He was really mad and packed my things and we left. Fled is more like it. They were evil.
Enough about me, bean has not been vaxed. He had trouble keeping on weight. he lost 11 oz. in the hospital. It got only slightly better, when we got home. Also, I was so wigged out about the doctors and nurses the only only one I would talk to was the LC. She was LIVID about my treatment at the hospital, and the only one I trusted.
He had bronchiolitis a lot, and he would lose the weight we worked so hard to put on. So, he was yo yoing for a while. it was really hard, because he had such a weak suck, and I was very inexperienced. When he was four months old, my then ds8 was diagnosed with Type 1 Diabetes.
It was very sudden and within 24 hrs I found myself back at the same hospital I had fled 4 mos. earlier, and SWORE I would never set foot in again. And needing to depend on the peole I hated and distrusted to care for my son. It was very surreal.
I tried to pump the first day, and the stress of it all was just too much for me and I weaned him, even though I didn't want to. I just didn't have it in me. The room in the hospital was not conducive to pumping, and I didn't know how AND I had a crappy manual pump AND I was so devastated about my ds8, I just didn't have it in me. BUT when he started the formula, he didn't have trouble with the weight anymore. He finally started to look better.
Bean hit ALL of his milestones, either on time or early, until six months, when he should have started to sit up. Then he just stopped. He was saying the syllables ma and da, then he just stopped. It was like he stayed at 10 mos. FOREVER. He finally sat up at 14 months, and now at two is still in the beginning stage of walking. He just discovered his toys a few weeks ago.
He has always enjoyed a lot of social interaction, he just always seems alot younger than he is. His hearing and vision are good. When he was accessed for speech, physical and cognitive development right before he turned two, he was given the range of 9-18 months, depending on the category.
Ok, this was long. Excuse the mini vent in the beginning.
Oh yeah .. a couple of nights ago in bed, I was laying my head on his chest and it sounded like his heartbeat was irregular. But, wouldn't the doctor have noticed that at his check ups? He listens to his heart. Bean was just there a couple of weeks ago.
Hi everyone, I'd like to subscribe if that's ok!
: to your family.
I did contact Early Intervention. They were the ones who assessed him. He is receiving services for occupational and physical therapy, and speech. Seems like a great program.
But his defect is "new", so the oldest child I know of who has survived with it is only 15. 20 years ago children with this defect were dying and it was being ruled a SIDS death. They only discovered it when they started doing autopsies on babies who had died of "SIDS". The pulmonary veins go behind the heart so this defect is so hard to detect - and is often found after it is too late.
If my stupid OB would have honored my concerns, instead of patting me on the head, they would have caught the "clerical error" and my Bean would not have been ROBBED of his last month in the womb!
BUT, I blame myself. I should have insisted. I should have listened to my gut.
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: ) i am pregnant again and am nervous about having pre-e again and another preemie.
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