Wednesday, November 28, 2012

From Hospital to Home

Finally, all 11 of us under the same roof.  It happened last Friday, the twins were discharged from the hospital after an 11 days stay.  A lot of investigation, a lot of care provided by a fantastic team of caregivers, angels.  Still, no firm diagnosis.  They will be readmitted on Dec 10 for a week and will undergo a liver biopsy.

It has been a bliss as everyone is settling in in such a nice way.  Seven older sibs were thrilled to welcome their baby sisters and the twins are delighted by all the action around them: lots of smiling, cooing, rolling over, grabbing toys, the difference is incredible.  Food and calorie intake is a big source of stress for Michael and I: we so much want them to gain weight.  Unfortunately, we found out on Monday, when we went back to the hospital for blood tests, that both of them had lost about 200 g since discharge.  I have a feeling weight will be our battle with our little darlings.

Michael is becoming quite the expert though at making super fatty soups for them.  His record to date: 3000 some odd calories for 10 cups of soup.  His secret?  Coconut oil (full of MCT), cream cheese, cream, butter, combined with very nice veggies and beef or chicken broth.  6% fat content yogurt is also becoming a staple for the girls.

We are in the process of settling with the insurance to pay for their Peptamen, calcium and vit D.  Peptamen costs close to $500 for a 9 days supply and calcium represents $7 per day.  It goes up fast...  It looks like the provincial government will provide us with assistance which is great.

The girls are very easy to care for.  They love being on the floor, surrounded with toys and with the ongoing action of the house.  We are happy that they are doing better.  However, we still have our moments where we find it very much overwhelming.  We are trying to bring back a new normal to this house.  Michael and I truly love these girls, and the rest of the family feels the same.  We are eager to get a firm diagnosis.  We are suspended and are unable to truly move forward until we have this diagnosis.  We believe once we have this, we can have a plan to get these girls in a much healthier state.  What is interesting is that while we are suspended, we must keep moving forward, planning for events like the Holidays and balance the needs of these two little girls with our other seven children.

Michael has gone back to work and I found myself having to face my fears of being alone with them: what is they refuse to eat?  What is I can't get them to take their medication?  Will they keep losing weight?  I must get myself out of my ''spirales'' and concentrate on the positive: I have them with me, those two treasures we waited for for so long.  I can't kiss them enough and I can't tell them enough that I will always be there for them, my two little fragile fighters.

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