First things first! We have arranged with the NICU for a "viewing" of sorts for anyone who wishes to see him. Next Sunday 10/19 from 1pm - 3pm we will have Ethan moved to a room that has a viewing window. We encourage anyone who wishes to see him to join us. Tia will be in the room with Ethan to demonstrate what we do on a daily basis. I will be in the viewing room with all of you incase you have any questions. There is no need to RSVP or arrange a time. Just show up. Directions will be included at the end of this update.
Ok, so not a lot has changed. Our little boy is doing fairly well. He continues to gain weight and is now up to 11 lbs ??? oz.
He has begun to desat (drop his oxygen level, it means desaturate) every time we go in for care, or a feeding, or play time, so the unit has put another nasal cannula in again to help regulate his oxygen levels.
The Occupational Therapist (OT) has set up play time with him every day to help with his development. Her and Tia have a little mat that they lay on the ground and we get to play with him. I haven't been there yet to do that, mostly because we just started this about two days ago, but Tia has and said that it was a lot of fun.
We have decreased his feeds again because he continues his dumping thing. We give him 6 cc (which is like NOTHING) of straight breast milk in a bottle, and send the rest of his 30 or so cc of formula idown his feeding tube.
He has developed a slight cough, and his CF doctor has started testing for all sorts of things that could be causing this cough. Everything from the common cold, to clamidia. We even did a very specific blood test to tell us what kind of bug to look for. Even that did not yield any results. So we are now giving him an inhaled steroid.
Again, I do apologize that these updates are so few and far between, but like I keep saying, I can't update on anything if there is really nothing to update on.
I will say this as a last piece of...thing! We are having some political difficulties with the staff at the NICU. We could use prayers for...well...for sake of the reputation of Deaconess, lets just say that God knows what we need.
Thank you all for everything!
- We take the Lincoln St exit and turn right at the first light (I believe it's 3rd st)
- Stay in the right lane and turn right on Wall St.
- Take a right on 5th st.
- The first entrance you come to is the one you want to take. The bulding on the right is the Mother Baby unit. That is the entrance you need to go in
- If you follow the driveway around to the right you will enter an extremely small parking garage.
- In this parking garage you can park ANYWHERE you want except the Neonatologists parking. This garage is not patrolled by security because they know that parking is limited. You will not get any sort of ticket if you park in a spot that is not designated for you. JUST PARK ANYWHERE!!!
- Go in through the front doors and take the elevator to the 3rd level. Make a right out of the elevator, make a right at the hallway (a large fish take will be on your right), and go through the double doors. When you look to your left you will see another set of double doors that will say check in with the staff. You can do that if you want, but there is no need. To the left of the double doors is a small waiting room, that is where I will be, and that is where you will need to go!
If you need more directions, please feel free to call me.
We look forward to seeing you all there!
- Kip, Tia, Riley, and Baby E -