Team Everly

The Kiss Attack

January 07, 2015

1/7/2015 Team Everly Update — Everly has surgery Thursday to put in a central line IV. She is the most calm and relaxed we’ve ever seen her today, but she still needs to become much less dependent on the ventilator.

Here’s Colby kissing Everly over and over and over. She can’t stop.

Everly has been much more active ever since we weened her off of IV Fentanyl and moved her to by mouth Morphine. And it’s not the “I’ve got a dirty diaper here people” active. She’s both active and chill. She’s loving her new pain management situation.

She tolerates care a lot better too. Colby and I were able to change her diaper today—well we changed it twice, because she went again while we were changing her the first time. Rude.

Here is Everly with her eyes open:

It’s been a while since we’ve seen both her eyes open because the left side of her face was swollen from being tucked in the same position. Since Everly has been more energetic, she’s been moving around and looking much better.

As far as her care, the medical team now thinks a second line of access is critical. Before, we wanted to first see if we could care for Everly without any IVs and then remove her umbilical cord IV which is becoming more ineffective and carries a higher risk of infection the longer it remains in.

We want a second IV put in before we remove the umbilical cord IV so we have a backup. The IV access will give us the ability to administer medicine directly into the blood stream if Everly ever needs it fast. It also allows us to manage hydration, better administer antibiotics if we need them in the future, and we’re able to easier draw blood for tests without regularly sticking Everly.

Plus, a central line IV would give us a longterm solution to IV access. The surgery carries with it risks, especially for a child with brittle bones, but the risks of surgery seem less intense that not having a backup IV in place for emergencies and for a wider range of care options.

Even after the central line is in, we’ll keep administering base pain management by mouth.

The new central line IV will be a broviac catheter or something similar if you want to Google it. The surgeons will enter through the cheek, neck or under the clavicle and run a line to a vein above the heart. The team is still discussing the best option for Everly.

There are general risks for this type of surgery, but there are added risks that a surgeon could break some bones during the operation since Everly’s are so fragile.

Surgery is slated for midday, perhaps around noon CST, but they could move our slot around. Please be in prayer for that surgery. We may also be transporting Everly to another NICU bed that is more private which also carries risks, but would be exciting if we can pull it off.

On the Ventilator Liberation Front, Everly has been requiring far less oxygen lately, but it’s far more important that she requires less automated breaths from the ventilator and that she requires less pressure.

The number of automated breaths and the pressures she needs on the ventilator are still the same. However, we’re pretty proud of how active and relaxed Everly has been today. We’re hoping it’s an indicator that she (including her lungs) is ready to take on a bit more of the work.

Today’s lesson: Babies are cuter when they aren’t heavily sedated.

Please pray that:

  • Everly’s surgery for adding a central line IV doesn’t have complications on Thursday.
  • Everly will be able to breathe more on her own and we’ll be able to liberate her from the ventilator.
  • God will bring us all closer to Him. -Everly’s umbilical cord IV doesn’t cause an infection before we can remove it.

Much love from Team Everly

Nate Baker

Written by Nate Baker. Nate lives with his wife, Colby, in Nashville. After Everly passed, Nate and Colby adopted 2 childern and they are crazy cool.