Sunday, November 16, 2008

on the other side

Well I guess it's about time I let everyone know how things went, & how they're going. I'll start from the beginning. We got to the hospital at 5:30am on the morning of surgery. They did labs & stuff to get her prepped & at about 7:20 they took her from us. We handed her over to a nurse & watched as she walked away with my baby. We sat in the waiting room & tried to read books, carry on small conversation with our pastor who was waiting with us, anything to keep our minds busy. We drank a lot of coffee. It seemed like forever. They gave us updates now & then, so that was helpful. At about 11:00 I went over to the PICU to "pack Ember's lunch." I got to use the room that they were going to put her in, I got to meet her nurses, and best of all I got to use up some time. Shortly after I got back to the waiting room they let us know that they were done & everything went as expected. We couldn't see her for about an hour so we went out to grab a quick lunch. When we got back we only had to wait about 5 minutes before they called us in to see her (she was in PICU then). I was pretty well prepared & was just relieved to see her all in one peice & breathing. Ryan got a little woozy though. It was a lot to see her with all the IVs, tubes, & wires. They let me give her some pedialyte & to my great surprise she took the bottle without a bit of protest. I had been trying for a month to get her to take a bottle & she wasn't having it. That was one of my concerns - I didn't want things to be any worse on her than they needed to be. But she looked pretty good, no swelling yet at that point. Her eyes were glassy & she slept a lot in the ICU, but really not much crying (she never has been much of a cryer). Ryan and I get a parent room on the pediatric floor & that's where we slept the first night while she was in ICU. The parent room was really just a hospital room - the one she was going to be in when she got out of ICU, but it was really nice. They had a lot of cool amenities since it was pediatrics. Lots of snacks & coffee available, the nurses were AWESOME (except for one, which I'll get to later), the hospital was just great to us in general. I can't even begin to explain how incredible everyone was. So anyway, we went down to see her in the morning on Friday, she was starting to swell a little but it was the first time we looked into her eyes & saw our Ember looking back at us. They said it was ok for us to hold her & offered to help put her in my arms so I could feed her. I was really reluctant & nervous but she did well. She ate & fell right back to sleep. She got cleared to go to her pediatric room. A Child Life Specialist (coolest job in the universe) came in & brought her a cool crib toy. The rest of that day is just a blur of Ember sleeping & eating, nurses & visitors coming & going. That night our friend Paula was peeking at Ember one last time on her way out the door when she noticed something dripping from the site where Ember's drainage tube entered her head & we saw that her bed sheets were soaked. It felt like all the blood just fell out of my body. We called in the nurse to look at it. She was going to call the doctor but first decided to call in another nurse who was supposed to be more familiar with this type of surgery. The nurse she brought in gave a very flippant "Well, as long as it's coming out!!" and left the room. I wasn't satisfied with that & neither was Ryan or Paula (whose adult son had the same surgery when he was a baby). I found my nurse & told her I wanted her to go ahead & call the doctor - she said she was thinking the same thing. I think that night was the worst night of my life so far. There was so much commotion, so many grave faces trying to figure out what was going on. The doctor's PA got called in, he was concerned that it might be cerebrospinal fluid. He wanted to take out the drainage tube to stop the leak but he called the doctor first to clear it. They decided to wait because it was the middle of the night & the operating room wasn't staffed. If there was an emergency they couldn't get her adequate care. So they spent the rest of the night monitoring her really closely. She was miserable - obviously in pain. They kept messing with her & she couldn't sleep. At about 5:30am (Saturday) they came in to check her blood levels & for whatever reason they couldn't get a good sample. For 2 hours they were sticking & squeezing her heel. It was horrible. The PA finally came back later that morning to take out the drain. He said since it was only one or two stitches it would hurt worse to give her the numbing shot than to just go ahead & stitch it. So I watched them hold her down & give her stitches without being numbed. It made me sick to see her screaming in pain. By the time that was all over it was after noon. She fell asleep & slept for 5 hours straight. She got up to eat & went back to sleep until the following morning. That was Sunday morning. The PA came back to check on her & said he had been worrying about her all night, waiting to get a call but was glad the call never came. He said she looked great (she did, the swelling had gone down drastically) and that we could go home. Ryan tried to talk him out of it, he was really freaked out about taking her home. He wanted her to stay another night but the PA convinced him that she was ok. So yep, that's that. We went home.

She's doing really well now. Her forehead is still sore & she still gets fussy when her tylenol wears off. But she's not acting like she's in any pain most of the time, her incision seems to be healing well, she's acting like herself & she seems a lot less breakable to us. Her follow up appointment is tomorrow. It will be the first time I take her out of the house since we brought her home a week ago. I'm a little nervous but I'm sure everything will be fine.

I want to thank everyone who was praying for Ember. Aside from the one horrible day everything went really well. It's been great having all the support & hearing about people we've never met who are praying for our little girl. We had lots of visitors in the hospital, people bringing us meals, & TONS of people wanting to know how she's doing. So thanks everyone.

Wednesday, November 5, 2008

tomorrow is the big day

Well, it's finally here. The butterflies that have taken up residence in my stomach will soon be released. Here are a few final details, I apologize if they come out scattered.

* The surgery is taking place at St. John's Hospital at 7:30 am tomorrow. Surgery will take about 4 hours, the first 2 being anesthesia.

* We are welcoming visitors, but be prepared - she will look pretty rough. If you'd like to come visit please call Ryan's cell first. If you don't have that number and can't find someone who has it, you can call the hospital's patient info number and they should be able to connect you to the room. 417-820-2087 Visiting hours are from 9am - 9pm. She'll be in ICU the first day so it's possible that visitors may have to wait until she is moved to the regular pediatric floor. Just call & we'll let you know.

* We are asking that no children come to visit. Ember's appearance will be shocking and possibly scary to the kiddos. She'll also have a lot of tubes & wires, etc and having little ones around will make me pretty nervous (I'm sure I'll be a wreck already).

* There is internet access at the hospital. I am borrowing a laptop so I can try to update, but I'm not very laptop/wifi savvy, so we'll see.

How you can help:
A lot of people have offered to help. Here are some things you can do if you'd like.

* Pray (obviously). Pray for the surgery to go well, for her recovery to be as painless as possible, for minimal swelling, for no complications, no reactions to medicine, no feeding problems, no nausea, for her to sleep well. Pray for Ryan and me that we handle things well, know how to take care of her, don't take our frustrations out on each other, and of course anything else you can think of.

* If you know us well you can come to the hospital & stay with Ember for a little while so we can step out & get coffee or just clear our heads for a while.

* You can just come sit with us, play cards, read to Ember, whatever.

* You can bring us DVDs, snacks, books, stuff like that.


Ok, that's all I can think of. Thanks for all your support!