Spoke too soon

Didn't think I would be writing this: We are leaving the hospital and going home today without babies. Nope, not one. Instead, we will be hanging out with our favorite little people here in our Penthouse Suite with a view...

At 4:30 am this morning, I woke up to a familiar knock at the door telling me to get up and feed my babies. After a short feeding, I put Ethan in his bed. About 30 minutes later, Ethan had a brady. His nurse, Mariah, and I watched the monitor and his coloring for about 10 seconds and then watched him start to turn blue with his oxygen saturation go to about 60%. We gave him some oxygen and I knew exactly what that meant. He will not be going home with us this weekend. Doug and I have had emotions pretty close to the surface today. It is likely that we will be leaving Ethan here and taking Sydney home with us. The thought makes me sick--Ethan is struggling and I take his sister home and leave him alone? Seems wrong.

Ethan got a new cast today. Some good news--his foot nearly looked straight. We forgot to get take a photo before he got a new cast on and the nurse woke us up at 7 am after Dr. Faux had already started casting. He said he anticipates doing 3-4 more castings before we'd know if he will need to achilles release procedure (cutting the achilles tendon). I did a little decorating today. Here is the latest.

Next thing we know, the social worker comes to our door to tell us that we cannot board tonight and the hospital is out of rooms. We packed up our things and vacated the room around 3:30 pm.

Sydney had a 'room air trial' this morning and afternoon (twice today) to see how she did without her oxygen. She failed both trials. The nurse practitioner, Cari, came into my room around 3:00 today and sat down to update me. She said that she would need to count Ethan's brady as severe and the soonest he could come home would be next Friday--if he has no more bradys. She said she thought we had pushed them too far. She said that Sydney will do another room air trial on Saturday and if she passes, she stays for 2 days of monitoring and she will go home. If she fails, she will be discharged with oxygen and monitors (yuck!) Sunday or so.

Here she is without her nasal cannula on her face.

A quick video of her without oxygen.

Around 4 pm today, both Ethan and Sydney got their shot of Synagis--an RSV vaccine. Ironically, it isn't really a vaccine--it is synthetic antibodies. It lasts for 28 days and we will be going to our doctor's office to get another one when they are home from the hospital. They made sure our insurance would cover it because the one shot is about $1,200 or something. They wailed for a second and then sucked really hard on their binkis for a while. There are a lot of RSV kids and babies coming to the hospital now, so they decided to do it a little early.

I call this our "jail break" photo--they were both looking out the window sucking their binkis after their RSV vaccine shots.

Later tonight around 7 pm, Cari called us saying that both Ethan and Sydney have not bet their 'quota' of milk intake for the 12-hour shift today, so Sydney's feeding tube is back in and they will only be taking 5-6 feedings per day by mouth. The rest will be in the tube again. She said, "I don't consider this a set back. We're just going to have them around anyway, so we might as well." I plan to have them do the tube feedings at night (yes Linda, the tube looks white because my milk is in it. It's mostly clear. It stays in it because they'd have to put air in it to get the remaining milk in every feed.) and then go to the hospital during the day for feedings from 10 am to 7 pm. I will do my best to get good sleep at night.

Overall, not a stellar day. Doug and I have been sad, but encouraged that they are still together keeping each other company. At least they aren't alone with the doctors and nurses--they have each other. (Not that those nurses are bad--thanks Rena.) In a strange way, we were excited about Sydney not making her feed quota because this could keep her there even an extra day (or more).

Sydney is not crying here--I think she must be yawning. I thought it was great the way Ethan was stretching himself out. It's funny--Today I've felt so sad they are in the hospital, but so excited that we are parents. They are so great. Can't wait to bring them home, but in the meantime...so glad they are ours.