Its Snowing!!
Benjamin has a small blot clot in his left atrium which is being treated with a treatment dose of heparin. The does is minimal and is being used to keep the line open rather than do specifics to his heart. Heparin is a heart function medicine.
He has lost weight and is now only 2.48 Kg, which is quite disappointing. He is now having fortifier added to his feeds and is on 480ml of feed in 24 hours! He is just short of a normal feed amount for his age. Its very exciting to See the milk I'm expressing helping him grow and develop, even if I cant breast feed. Ive come to terms that he probably wont breast feed and maybe on enteral( tube) feed for some time.
Were being moved into isolation again, but only to keep Benjamin safe as the ward is full of children with respiratory problems such as bronchilitus. So we have our own TV to watch again. No more Jeremy Kyle though!
The weather is so bad they are shutting part of the motorway so we are worried about getting home and seeing everyone. I really miss Justice so everyday we check BBC weather and pray we can go home for Christmas day.
I had a little blip last night and went to ICU at 02.00 am to see Benjamin but I'm feeling more positive again. I met with Victoria the psychologist about how abandoned I felt while giving birth an dhow I'm finding it hard to let go off everything that happened. Not only are we in an abnormal situation now but I have been in 1 ever since I went into labour. Victoria will get in touch with PALS to discuss my issue. Hopefully it will help other moms not feel so abandoned. The lady from PALS called me and was very sorry and feels passionate about the situation and will investigate.
Benjamin has had a Hickman line put in today. A Hickman line is what they put in the skin to assist better longevity of lines for medicines. It goes beneath the skin for a couple of CM, before going down the veins. This helps stave off infections and can be left in for months. Its a funny looking thing as its white and looped under a see through plaster to check it. It is a double lumen ( two ended line for several medications)
Finally his arms and legs are free from lines so we can dress him properly. Bring on the cute baby grows , if only he wasn't so small :)
there was a stitch left in his chest drain site and it was slowing down the healing. Kerry spotted it and had the doctor remove it. I hope that it will start to heal soon as it really looks nasty and tissue viability are now involved. His surgery scars , on the other hand, are healing beautifully. The skin is smother than we would ever have imagined and we have laughed about the stories he will tell the girls as he gets older. we are very pleased with his healing.
Benjamin is responding to us now which is so great. I love going in everyday and seeing the little "baby" things that he is starting to do. He has a thing about sticking his tongue out and stares intensely at you. He is also Practicing his smiles in his sleep. Such a beautiful thing to watch. He gives me butterflies every time. Benjamin is a very strong little monkey and fights against you if your doing his physio and hes not in the mood. We need to do physio on his arms and legs as the time he has spent on muscle relaxant and sedation has caused issues with his muscles development. He is constantly in his fetal position, or as Dave calls it his skydive pposition. By carrying out physio we are able to lengthen his ligaments and strengthen his muscles. Its a great excusee to touch him.
I love him so much I cant wait to take him home and share him with everyone.
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