FAQ

1. How does Lillian Grace keep pulling her tube out? Don’t the nurses watch her?

Lillian showing tape and tube

The ventilator tube is a small, plastic tube that rests in her trachea.  The tape above her lip is supposed to keep it in place; however, if she moves her head too much it can slip out (extubate, in the official jargon).

The nurses monitor her vital signs very carefully. Part of the treatment for preemies is to keep them covered in a womb-like state. It is not good for her to be constantly disturbed. It is very obvious if she extubates or if her vital signs drop, and the nurses come running — they are at most only a step or two away. Lillian loves to move and we strap her down as best we can, but she is proving to be a tiny Houdini.

2. Why is she having so much trouble with her lungs? Why is weaning her off the ventilator taking so long?

Vent and monitors

The main reason Lillian has so much trouble breathing is that her lungs are very, very premature. Her gestational age (computed from the date of the mother’s last period) was only 23 weeks 4 days when she was born: right at the edge of viability. The vent supports her and gives her time to grow; but it is a double-edged sword. Her tiny preemie lungs are thin — much like tissue paper — and the pressure needed to keep her lungs open can cause tiny tears. Pure oxygen is not very good for lungs or tissue growth and it can cause other damage to other parts of her body as well. Ultimately it’s a waiting game that requires a lot of patience.

3. Why is Lillian strapped down? Do you think she’ll run away?

Lillian strapped in

There are 2 main reasons Lills is strapped down. The first is she wiggles a lot; the strap at her shoulders helps keep her head in place. The second is to help with preemie development. When Lillian was in the womb she pushed and kicked against the walls of the uterus which helped muscle tone and brain development. The nurses tuck her in and strap her down so she has something to push against. This makes for a happy and calm baby.

4. Why are they feeding her through a tube? She’s eating milk, why don’t you just breast feed her?

Feeding Pump

Babies do not develop the sucking and swallowing reflex until late in the gestational period. We are very pleased because she loves to suck her fingers or a pacifier: this is a good sign. Unfortunately, she needs the vent support which requires a tube down her throat, making swallowing very difficult. It is one of the many reasons we would love to get her off the vent. In the meantime the feeding tube will do — getting mother’s milk is the best nutrition she can get and a major plus for her continued growth and development.

5. What is the big deal with kangaroo care?

It’s great for us because our chances to hold her or provide extended comfort are very limited. Everything is over-stimulating to a preemie and we have to be very careful to keep her calm in order to protect development. It’s a bonding experience between us in an environment that can make bonding a little tricky. For Lillian it helps her to breathe easier, to regulate her temperature, and it encourages brain development — all things that are vitally important right now. The neat thing is she really responds positively to it and the calming effects last several hours.

6. When will Lillian come home?

Oh, how I wish we knew!

The truth is she will probably be home around her due date, December 2nd. We’d be really happy to have her home by Christmas.

7. Is there anything you need?

One of the things we have been so grateful for is the amazing outpouring of support from everyone. Unfortunately, our freezer is dedicated to breast milk storage and has no more room. Really, for right now the things we need most are your prayers and good wishes: we appreciate them more than we can say.