Continued from Chapter 1
Recap: The four week old babies Theo* and Lee* were ready to be discharged from hospital and I went to fetch them. The first weekend with the twins was a disaster. I bought food from a vendor at the hospital and ended up on a drip after a severe bout of gastro and Danny had bronchitis after spending a day with his mother.
Life became a haze of feeding, burping, and changing nappies. After a week we found a rhythm and our new routine became more manageable.
Two weeks into their stay with us, Lee became ill and was hospitalised. This set the scene for the coming weeks. Since birth Lee has been in hospital more than 70 days.
-What is VACTERL association?
'VACTERL association is a non-random association of birth defects that affects multiple parts of the body. The term VACTERL is an acronym with each letter representing the first letter of one of the more common findings seen in affected individuals: (V) = vertebral abnormalities; (A) = anal atresia; (C) = cardiac (heart) defects; (T) = tracheal anomalies including tracheoesophageal (TE) fistula; (E) = esophageal atresia; (R) = renal (kidney) and radial (thumb side of hand) abnormalities; and (L) = other limb abnormalities. Other features may include (less frequently) growth deficiencies and failure to thrive; facial asymmetry (hemifacial microsomia); external ear malformations; intestinal malrotation; and genital anomalies. Intelligence is usually normal. The exact cause of VACTERL association is unknown; most cases occur randomly, for no apparent reason. In rare cases, VACTERL association has occurred in more than one family member. Treatment depends on the symptoms, and may include surgery to repair the birth defects, followed by long-term management.' Source
Baby girl Lee* has many of these anomalies and we are yet to understand the full extent of them.
-When the abnormal becomes my normal.
When the twins came to stay with us the first thing that I learned to do was to replace the colostomy bag. It took a little while to get the hang of it, but soon cleaning and changing the bag became part of our daily routine.
After the third bout of pneumonia, it was discovered that Lee had silent aspiration – meaning that some of the milk she drinks goes into her lungs. She also had severe reflux so normal feeding was out of the question. She had to be fed through a nasogastric tube (NGT).
In order for me to take her home, I was taught to replace the tube should it come out. The first time was absolutely terrifying but this also became a “normal”. After 3 weeks in hospital Lee could be cared for at home. Her milk was given with a continuous feed pump – almost like a drip. It was a great feeling to leave the hospital, prepared with all I needed to care for her at home.
The first night home was a nightmare. After setting up everything like I did and saw in hospital, I breathed a sigh of relief when I got into bed that night. An hour later the machine started beeping. It kept giving a signal that there was a blockage in the line. By 3am I had changed the line, checked the milk for lumps that could block the tube and even replaced Lee's NGT. For the rest of the night I fed her 5ml every 20 minutes.
When the sun was up I put Lee, the pump and all the trappings into the car and went back to the hospital. After testing the machine in the ward, we found out that the pump that I was given is faulty.
Life settled into a routine and for three weeks we were at home, waiting for the date of her planned Gastrotomy surgery.
Since birth she has already had 2 operations. The first was a Colostomy to remove the faeces from her bowel.
The second operation was a Gastrostomy to insert a feeding tube that goes directly into her tummy. This makes feeding easier as she doesn't have to contend with a tube going down her nose and throat day and night.
Further surgery to correct her bowel is planned for 2018, as well as surgery to turn her fore-finger on her right hand into a thumb as she was born without a thumb on that hand.
- All names have been changed to protect the identity of the babies.
Chapter 3 to follow
If you would like to know more have a look at our Facebook page Sparrow House - a second home for babies
Thanks for reading
Gretha