Tuesday afternoon and Wednesday

Tuesday, November 18 (afternoon)

Faith started to wake up when we were doing her cares in the afternoon. She opened her eyes and moved around quite a bit, and even tried pulling out her ventilator tube! Erin gave her some more morphine and she went back to sleep. It's important for her to stay asleep as much as possible, and not move around, because it can fight the process of the organs going inside, and we don't want her to be in any pain. The first picture is a little blurry, I'm still figuring out my dad's fancy camera and sometimes it's hard to get it to focus...

Faith's overnight nurse was Jennifer again. Still no echo report showing up...

Wednesday, November 19

Today's the big day! Faith is scheduled for surgery around 1:00 this afternoon! The surgeons came by on their rounds at 6:20 this morning, Dr. Potter came in and looked at her and said she looked great. At about 6:40, radiology came in and did an x-ray so they know where everything is before the surgery. Faith's got 2 nurses again today, Sarah, who is a senior nurse, and Erica, who just came here from Texas Children's Hospital, and is still learning the ropes here. They are very nice.

Dave and I went down to take care of getting a parking spot for the camper so my dad could move it over to the hospital while he was here, and then we were going to get some breakfast, but we ran out of time, because we wanted to be back upstairs in time for Faith's cares, so we could help. We ended up getting a coffee and waiting on the breakfast.

Pre-op: Not much left for them to put in!

Faith's x-ray showed that her tube wasn't in far enough, so a respiratory therapist came in and pushed it in a little. Faith REALLY didn't like that, and got very upset. She cried and flailed her arms and legs and started grabbing onto the tube again, and onto her NG tube (the one that suctions out her stomach). Dave and I did everything we could possibly do to help her calm down, but unfortunately at this point that consists of cupping her head and holding her hands, since we aren't able to hold her yet. It was so hard to see her upset and not be able to help her! When she cries, you don't hear anything because of the breathing tube. It's very sad to see, and makes my arms ache to pick her up and soothe her...

They gave her some morphine to try and calm her down, but it just wasn't working. Finally the respiratory therapist came back and decided that maybe the tube was too far, so she pulled it back a little bit and Faith finally calmed down. She still was much more awake and moved a lot more this morning than she has before... I wonder if she is getting used to the Fentanyl, because Mary Ann had told me on Friday that that happens, and then they have to increase the amount in order to give the same amount of relief.

Finally settled down and resting before surgery

Faith's angel broke today; one of the butterfly wings fell off. I think one of the nurses accidentally knocked it over. Dave had to go to the store anyway, to get my mom some ice for the cooler in the camper, so he picked up some super glue so we could fix it. When he got back, he was on the phone, and I, impatient as I am, took it upon myself to glue the wing back on. I proceeded to glue my right middle finger to my right thumb, thinking I had one finger on either side of the wing, when in fact they were together. Oops! Luckily Sarah thought of using the stuff they use to un-stick tape and stuff from Faith, and we were able to get them apart. Luckily, Dave didn't take a picture... so there's no embarrassing evidence :)

When we did Faith's late-morning cares, we noticed that there was a lot of yellow drainage up into her silo. None of us had ever seen that before. The nurses called Dr. Potter and told him about it; he might come by later and look at it. Then they told us Faith's surgery was pushed back to 5:15, so Dave and I decided to shower and then go over to the camper to get the boys and give my mom a break. I showered first, reminding myself the whole time not to be disappointed, and that whatever baby bumped us back needed to have surgery right away, and Faith would be ok waiting.

When Dave went and got in the shower, Sarah came back into the room and said that they WERE going to do the surgery at 1:00! (At this point it was actually about 1:05.) Things started happening really fast, and I called my parents to let them know, and hobbled down as quickly as I could to get Dave out of the shower (I've been alternating between walking and using a wheelchair, because my joints have been pretty bad and my legs have been swelling from the lupus). Luckily he was just finishing getting dressed, so we were able to get back down to the room just in time to talk to Dr. Partrick, the surgeon, and have him reiterate the details.

Then the anesthesiologist came just as my parents got here (they got held up at the front desk b/c the person there actually checked the boys and made them get an apple sticker saying they were healthy... great timing for them to start doing that!) and told us about what his job was, and what we could expect. It got a lot more real (and worrisome) at that point for me, and I guess all the people in the room must have been able to tell, because they kept asking if I was ok and offering to let me kiss her again before she went down.

Nathan, thinking about "baby sister" having her tummy fixed

I never knew that you could be scared, and excited, and happy, and nervous all at the same time. We all went down to the surgery waiting area, and I used the pumping room down there and pumped and cried... Then I got myself together and went back out, just as my mom and dad were taking the boys downstairs to run around and get some food. Dave ran my milk up to drop off at the milk bank in the NICU and sterilize my kit parts. While he was gone, I was in the waiting room by myself, and I learned that I knit quite well (and fast) when I'm nervous... I guess because knitting is kind of like fidgeting :) Then the nurse called from the OR with an update, to let us know that everything was going well and they were just getting started on closing her up. My dad came up to get me to eat, and we left Dave a note and he came down and joined us, and we had a pretty nice lunch.

When we got back up to the waiting room, Nathan ran right over and sat down in a chair in front of the TV to watch cartoons. We waited for about another 1/2 hour or 45 minutes, and then Dr. Partrick came out to tell us that everything went very well, and to explain what to expect from here. He said that they had her pretty heavily sedated, and were giving her a drug called Atavan to keep her paralyzed, so that she wouldn't move and fight against the skin going back together. It also helps keep her more asleep, so that she isn't in any pain.

He said that now it is just a matter of waiting; she will be on the atavan for a couple of days, and probably on the ventilator for a couple of days after that. Once she is off the ventilator, if she seems to be doing ok, we can finally hold her! He said we should expect it to be about 2-3 weeks before she can start eating, and that during that time when she can't eat, she will probably be very fussy and upset. When she can start eating, it will be tiny amounts, just to test and make sure that everything is working like it should. He said they will probably also give her some suppositories to encourage things to start moving. Assuming that everything works how it should, and that she does well with eating, we will be able to go home as soon as she is up to full feeds!

My parents went then to move the camper over from the campground to the hospital, and Dave and I hung out with the boys. We waited downstairs because someone was bringing us a meal (Thank you so much again!!) and then took the meal and the boys up to the family lounge in the NICU, and then we took turns going in and seeing Faith. It was so great to see her all closed up, without a silo hanging above her in the bed! They put a catheter in, because the Atavan makes her not pee right.

Post-op: All closed up!! :)

After awhile, my parents called to say they were all moved, and we loaded up and took the food down to the camper. Dave pushed the boys in the stroller, and I carried the meal on my lap and rolled myself out in the wheelchair. I'm getting pretty good at the wheelchair, but I have to say, that was a LONG way to roll myself! And the sidewalks really aren't very flat... I got a good arm workout though. We ate supper together, and then it was time for me to pump, so Dave pushed me and Noah back up to our room. Nathan fell asleep in the stroller on the way out to the camper, so he stayed in there and slept for awhile longer while my parents finished getting things together to go home. We decided that my mom and the boys needed a break from down here, so they all went home for the weekend.

Dave decided to stay the night and just leave early and go to work from here, so we settled in and relaxed for awhile after the stressful day.

Our overnight nurse was Chara, pronounced like "chair" with an "a" at the end.

Thanks to everyone posting comments and keeping us in your thoughts and prayers!! I will post some more in a little bit, but it's time to pump and eat some lunch now :) I'll be back on after that though to post about today so far, and probably also post a picture tour of the amazing NICU here, so everyone who isn't able to come and visit in person can still see what it's like; I can't believe how different it is from the NICU at the old Children's Hospital! We are amazingly blessed and lucky to be able to have our baby in one of the best hospitals in the country for babies, and God has taken care of us in so many wonderful ways...