*First of all I want to thank Dawn Klein!!
She has been such a great help!
She read my translation of Sharon's story and was so kind to revise where necessary, and also added the medical terms (and explanations) I could not find in my dictionary*
It's difficult to write a short story. In the period before and after Sharon was born, we kept a diary. That has become quite a book. If I would type all that information it would take some time. So I will try to pick out the most important things.
Sharon was born when I was 29 weeks and 4 days pregnant. The reason she was born premature is because the placenta was a little bit in front of the cervix, which is called placenta previa. That condition caused bleeding and that resulted in premature contractions. All of this started already in week 13. I was in the hospital several times on an intravenous infusion (IV) to stop the contractions, and when I was allowed to go home I had to take medication (and lots of rest).
On December 29th '89 we were visiting friends and suddenly I felt something. I was scared I was bleeding again so I went to the toilet to check, but I did not see anything. It happened again and it appeared I lost amniotic fluid. We went to the hospital immediately. I had to stay there and be sure, so they started an IV again. But the following days nothing happened, so the IV could come out again. The amnion wasn't really broken; it just had a little tear.
In the night January 4th to 5th I was sleeping. I woke up because I had to go to the toilet. When I was back in my bed again suddenly I had terrible pain in my abdomen. I called a nurse and I was put on the fetal monitor (that registers the contractions and the heart beat of the baby). It turned out I had strong contractions every 4/5 minutes! (And that while I had been sleeping until a few minutes before!)
They started an IV on me again, but it seemed that the contractions wouldn't stop anymore. The gynecologist started calling to different university hospitals, to find an Intensive Care Unit for a premature baby (there are not very many). Luckily there was one in Rotterdam. I was brought there by ambulance. In that hospital they also tried to stop the contractions, but it did not work and on January 5th, 1990 at 10:15AM, Sharon was born.
They took her away immediately to a room next door where a team was waiting for her. I heard her cry a little while later. Before they took her to the NICU (Neonatal Intensive Care Unit), they brought the incubator to the delivery room so that we could see her briefly.
The doctor told us she weighed 1350 grams (or 2.9 lbs.) and she was breathing on her own. But it was very uncertain how things would develop. He advised us to wait a little with sending out birth announcement cards.
Later Cees went to the children's hospital and when he came back to me, I saw instantly there was something wrong. I asked him if Sharon was still alive, and if she was breathing on her own. She was breathing on her own, but was being assisted a little. But the doctors thought there was something abnormal with the lines in her hands. They thought Sharon had Down's Syndrome.
The next morning, January 6th, I was discharged from the hospital. The first thing we did was stop by the children's hospital. It is very weird to ask a nurse which baby is yours! She was still breathing on her own, but was being helped a little. They had put something called CPAP (continuous-positive-airway-pressure) on her nose that gave some pressure when she exhaled, so that she wouldn't have to work so hard to breath in again. I was allowed to hold her!
We were frightened. Sharon had become so tired that they had put her on artificial respiration. When they put in the tube they do that under narcosis, which means they paralyze the body with medication, so the baby won't fight the ventilator. So she was lying very still and on every "tick" of the machine her chest went up and down. It looked like she was kept alive completely artificially. But the nurse assured us it wasn't that bad. Sharon did not get much oxygen and not under high pressure, which was good, because too much oxygen can hurt the baby's eyes.
Sharon was breathing without help again, but the tube was still in her throat. I felt so sorry for her, you could see she wanted to cry, but because of the tube she couldn't. She was lying under a blue lamp to decrease her bilirubin level, since she was jaundiced. (Jaundice makes your skin look yellow and happens because the baby's body is working hard to get rid of extra red blood cells it no longer needs. Since the baby is premature, the baby's body has to work extra hard and can't quite keep up. So, the bilirubin builds up and the skin turns yellow.) Sharon also had to wear a little mask to protect her eyes from the light.
Sharon was lying under an oxygen cupola, the tube was out. Her nose was damaged a lot, that was why they tried the cupola first. Because she was under it shortly she couldn't come out of the incubator. While we were with her they had to 'tap' her twice. (children born premature sometimes 'forget' to breathe, the heartbeat drops and an alarm sounds -a sound I will never forget, while typing this I hear it in my mind- if the children do not recuperate from it themselves they have to be 'tapped', on their belly or feet). When Cees went in the evening he was allowed to hold Sharon and he had to hold a sort of funnel in front of her face,so oxygen would blow in her face. The nurse who was on duty told him opinions on the ward were quite diverse about whether Sharon really had Down's Syndrome.
Wednesday Jan. 10th
Since there were so many doubts on whether she had Down's Syndrome, they took some blood to count chromosomes.
Promotion! Sharon left the Intensive Care and went to ward 2 (High Care).
Thursday Jan. 11th
Sharon without cupola. She had to be tapped a few times. I was allowed to take care of her myself. Take her temperature, make her mouth wet, changing the mini-diaper. It got me in a cold sweat. Those tiny legs, all those wires and hoses. And she was so active!
Friday Jan. 12th
Sharon 1 week old! Still without cupola. She had a 'brady' twice (Brady=when breathing stops and heartbeat drops), one of them was very long. It seemed my own heartbeat stopped! That evening we could call for the results of the chromosomes count. The first time we called, the doctor in attendance was not around and they said he would call us back. We waited for half an hour (seemed like half a year), so we called back ourselves. The doctor was still not there, but after some insistence we got another doctor on the phone. And as I wrote in the diary: "He gave us the most wonderful, beautiful, fantastic news I would ever hear in my life: Sharon did not have Down's Syndrome!"
Note: Please do not understand me wrongly now: we had accepted Sharon as she was. We loved her immensely from the very first minute!!
Tuesday Jan. 16th
Sharon was in Intensive Care again. She had too many bradies. They were afraid she had an infection. Before she was started on antibiotics they did a spinal puncture (to test the spinal fluid for meningitis). She had a little fever also, which was why the temperature of the incubator was set to 'only' 33 C (91.4 degrees F.) She would get blood also.
Wednesday Jan. 17th
She had only 2 bradies and in the evening she was much more active. Making funny faces again (we called that 'smiling') She was thrashing about, and I was always scared she would pull out some wires.
Friday Jan. 19th
Back to ward 2 (High Care).
I was feeling down myself. It was so quiet in the house. Not pregnant anymore, but no baby. She was 'over there', all those nasty examinations and we couldn't be with her. An orthopedist had examined her, because one of her feet was crooked. But is was not a 'clubfoot', it would get better with physiotherapy. I picked up the pram that afternoon and I left it standing in the middle of the living-room to have at least a little bit the idea we really did become parents. Also picked up the wallpaper for the baby-room (we hadn't had anything ready yet).
Saturday Jan. 20th
Sharon got 7.5 ml (about 3/4 tsp.) of food every hour through a hose in her nose, so she would not need the IV anymore if she was off the antibiotics. No more pricking in her hands and feet (she still has the scars now!).
Monday Jan. 22nd
Sharon had a lot of bradies, but the nurse said that could be caused by the fact that Sharon had some hard bowel movements.
Tuesday Jan. 23rd
We worried for nothing. After Sharon had an enema she had a large defecation. So large, in fact, that they had to give her a new incubator! After that she had almost no more bradies, and she recuperated from them herself. I was allowed to "kangaroo" for the first time. That was so great. You may hold your child to your bare chest, it was so wonderful to feel that little body close to mine for the first time.
Wednesday Jan. 24th
The IV was out. Sharon could now thrash about as much as she wanted. She 'already' got 9.5 ml (about 1 tsp.) of food every hour. She has grown also (38.5 cm or about 15 inches). That's half a cm (or about a 1/4 inch)! Weight: 1490 grams (about 3.3 pounds).
Tuesday Jan. 30th
Just while I was with Sharon the ophthalmologist came. That was awful!! Sharon got some 'clips' in her eyes to keep them open wide. She was crying very loud. I had tears in my eyes, I just wanted to push the doctor away! But fortunately it was done very quickly and the results were good too. (I do not know exactly what can happen, but due to the artificial respiration there can be deformations in the eyes which can cause blindness). Sharon could drink from a bottle 4 times a day--4x bottle 15ml (1 1/2 tsp). and 16x drip-feed 12 ml.(1-1/4 tsp). The bottles of 2 .00 and 8.00 PM we could do ourselves. She had an IV again because they wanted to give her extra blood.
Thursday Feb. 1st
Sharon was discharged from the children's hospital and transferred to the local hospital. That morning I got a phone-call from the children's hospital. I was scared to death, but they only wanted my permission for the transfer. Well, of course I agreed! It was a step closer to home in both senses of the word. I went to the local hospital and waited on the children's ward on the 5th floor. I saw the ambulance coming, they put the incubator on a stretcher. There she was, my daughter! It made me cry (I did that rather often that period, and still do when I read the diary. I cry even now as I am typing this in English!). In this hospital they put her clothes on, little dolls clothes, which one of the nurses had made. She was lying on a thick mattress filled with granules. She really 'sank' into it. It just looked if she was much more happy here! It was quiet there with only one other baby. The nurses were on the corridor and watched the babies behind the glass and through the intercom. Now and then one of the alarms sounded, but in the mean time it was just silent!
Friday Feb. 2nd
1750 grams (3.85 pounds) and after she arrived in the local hospital only 2 bradies, recuperated from it herself and not 'deep', only 86 and 89 (the slowest heartbeat).
Tuesday Feb. 6th.
1860 grams(4.1 pounds). No bradies.
Wednesday Feb. 7th
The first bath!
1900 grams(4.18 pounds). 8 bradies. But they were cutting on the medication: caffeine, to stimulate the heartbeat, from 4 mg. to 3 mg. We had a conversation with the doctor, and he was very satisfied on Sharons condition. The increase of the bradies was indeed the result of the reduction of the caffeine.
Sunday Feb. 11th
Sharon out of the incubator!
She was in a cradle. I cried (again!) when I saw it. The nurses had decorated her bed with festoons. Sharon weighed exactly 2000 grams(4.4 pounds). (We think the nurses 'dodged' a little).
Tuesday Feb. 13th
Transfer from the warm incubator-room to the 'cold' room.
Wednesday Feb. 14th
The baby's bedroom was ready. Now the baby! Sharon weighed 2130 grams(4.7 pounds). All the nutrition she got from the bottle.
Friday Feb. 23rd
Sharon could come home on Saturday February 24th. She would get some blood before. The caffeine she still got (2 mg a day) we had to cut down further at home. She got 7 bottles 55 ml(about an ounce). And weighed 2400 grams(5 1/4 pounds). We decorated the house and felt so strange! Waited so long, been through so much, a lot happened, and tomorrow finally would be The Day! It was a little scary too, we would be on our own.
Sharon in her own bed! We went to check on her every half hour to be sure she was breathing.
After she came home it all went very well. She ate well, she grew fine. On June 18th we went to the children's hospital for a check-up, and they were very satisfied. We went to the NICU and High Care, and looked at the little babies. We got all silent, Sharon had been there too. It was very emotional. The sound of the elevator, the smell on the ward, the alarms, it was in my mind all day.
On October 17th '90, they did an ultrasound scan of her head and it was growing too fast. There was too much brain fluid, but not on the inside, but on the outside. The doctor assured us that would go away.
On October 30th we went to the ophthalmologist. Everything was OK, we did not have to come back there.
Sharon was rather 'pert': On August 27th '91 they wanted to give her physiotherapy because she did not walk, 10 days later she walked!
February '92 they were concerned about her not talking, 14 days later she said her first word (and never stopped again!)
In August '92 she had surgery because she had cysts in her groins. She could come home the same day.
March '93. We went for the last check-up in the children's hospital, we did not have to come back again. In 1995 we did go one more time (on our own request) because Sharon was so small (and often tired). It appeared that she has growth arrears of 18 months. But she will catch up later, when other girls stop growing Sharon goes on for a while.
Before Sharon was born I was pregnant two times.
The first pregnancy ended up in an immature birth after 20 weeks.
The second ended in a miscarriage after 7 weeks.
Would it ever go the way it should???
On July 20th 1992 Sharon got a little sister: Naomi.
Naomi was born after 41.5 weeks!