Hafidz's first days

Hi All.. I'm Wenny and this is my second blog. My First blog is written in Bahasa Indonesia and I'm still updating it until now. I live in Indonesia and in this blog I want to write about my CdLS Son: Hafidz. Sorry my english still rough  :>

Hafidz was born in January 26th 2O12. He was born premature, when my pregnancy just got on to 28 weeks. I had high blood pressure, up to 2OO mmHg. That day, I had a terrible headache since morning, I tried to have rest and took paracetamol but it didnt get better, so my husband took me to hospital in the afternoon. After 3 days in hospital, my blood pressure still high so doctor decided to perform C-Section. Hafidz was 96O grams weight and 33 cm long. Hafidz survived with severe breathing problem, so he was taken immediately to the NICU, doctor put on CPAP for two days. He is a strong baby. We're so thankful He survived and We couldn't wait to see him.

After surgery I was put in ICU because the doctor wanted to have a close look up to my blood pressure, it was still roller coaster, going up and down unstable. I had a shock the next day when it dropped too low, so I was told to stay lying on bed, and still not allowed to see my son. My husband kindly took the picture of him, that was the first time I saw my son, sleeping inside incubator with so many cables around.

Hafidz 5 days old, with small size diapers

On third day, my eyes couldn't see clearly, so blur and dark. The high blood pressure makes the water leaks from the blood vessels to my retina, causing the blur vision. I was so sad because this day I felt better and was allowed to visit my son in ICU, yet it didn't stop me, I miss him already! The first time I saw Hafidz, He was sleeping so quietly and peaceful, I couldn't see his face clear enough but I did see his tiny chest breathing, going up and down. My husband told me about his physical detail, thats when i knew he has imperfect limbs, but we don't care. We were crying tears, happy to know that God sent us this beautiful and strong baby boy, We love him unconditionally.

Hafidz age 2 weeks

 Doctor then explained us at the same day that Hafidz has Cornelia de Lange Syndrome. That explains his impaired limbs <Hafidz only has 4 fingers on left hand>. We were told about the developmental delay Hafidz might have in the future, some health issue he was dealing and about to deal. In his early days, Hafidz grew strong, gained weight, and was off from all the medical tools except the feeding tube after 2 weeks. Doctor focused on gaining his weight. When he was 1.5 months old, he had functional anemia, and received blood transfusion. Doctor said it was a common thing happen to premature baby, where the blood volume especially the red blood cells can't keep up with the weight gain. Thank God he grew even stronger after that.

Nurse in NICU started to teach him to drink with bottle at age 2 months. At the beginning, he could only swallow little amount, after several tries, Hafidz was able to swallow up to 35 cc, once a day, but he got tired quickly, and it took about half an hour. But He turned blue quite often because the sucking and the swallow reflex still not that good. But the doctor said it was okay to keep teaching him to drink. Hafidz stayed in NICU for 2.5 months. By the time he reached 2O7O grams, doctor allowed us to take him home. I felt a little bit unprepared but it was a great news and we were tremendously happy to bring him home :>