We're home!

Tabitha came home today! Even though we had 3 or 4 doctors/nurses tell us she'd be there 2-3 days, her surgeon was right...she only had to stay one night, and she's home now and sleeping sweetly in her bed. She's got pain medication and instructions to lie around and watch movies for the next couple days. She hasn't been complaining about pain though. Well, actually, she keeps insisting that she has boo-boos where the gauze was taped where she had IV's. But ever since we took off the gauze they magically don't hurt anymore. Fortunately, she can't see the bandaid on her back, so she hasn't been complaining about that. She does cry out if she tries to sit up, but as long as she relaxes in a reclining position she's fine. She's even back to bossing her brothers around already. =)

This is actually the perfect week to have her surgery, even better timing than I'd prayed for. I knew it'd be on a Monday, so I prayed that it would be after our homeschool co-op ended so we wouldn't have to miss that. That ended last week, and this week just happens to be our spring break...no AWANA, no Kindermusik, no piano lessons, and we're not even doing school work this week. So the timing has worked out great for sitting around watching movies for a couple days. =)

Thanks again to everyone who has been praying for us and supporting us in many ways. We really appreciate it!

Tabitha's surgery

Well, similar to our last trip to Hopkins, this one was a much longer day than expected. I guess I should start to expect longer-than-expected time frames. Anyway, we arrived at the hospital at 8am, as instructed. Tabitha had had nothing to eat or drink since 7pm but was doing quite well with that. (Despite the fact that Heath forgot the rules and asked her when she woke up if she was ready for breakfast....oops) So the surgery was supposed to be at 10:20. There was another little girl there who was supposed to be at 9 and didn't go until after 12:00. An emergency had come up, so the surgeons needed to take care of that child before doing the scheduled surgeries. Obviously that's the right choice, but it doesn't make it easy on the poor starving, dehydrated two-year-olds. Heath and I took turns sneaking out to the cafeteria to eat without Tabitha knowing--no sense in all of us being hungry and grumpy. I was very proud of her, because I know how I feel when I don't eat and she did MUCH better than I would've done! But by about noon she had reached her limit. She kept asking for water and food, and started crying. This was not her usual I'm-not-getting-my-way-or-my-brother's-being-mean-to-me cry. This was the sad, desperate cry of a child whose basic physical needs are not being met. I can't even imagine being a mother in a famine/drought-plagued country where hunger and thirst are a daily reality. But that's another topic.

Anyway, so by noon she'd reached her limit. I think if we'd gone in on time she probably would've handled the anesthesia process a lot better, but she was so exhausted and hungry and dehydrated and miserable that she was a wreck. It was 1:45 before we actually got called back. As soon as they gave me the gown and hair net to put on, Tabitha started sobbing. I guess those clothes are the signal that something "bad" is about to happen. Only one of us could go in, and it was my turn. So I robed up and carried her back to the OR where she continued to sob hysterically. But after breathing the gas for less than a minute she fell asleep and looked quite peaceful.

So Heath and I decided to take some of the extra stuff we had out to the car and get a snack. If you've never been to Hopkins let me just tell you--it's huge! The place we parked is a good 10-minute walk at a brisk pace from the operating room. So we're all the way down by the parking garage and we get a phone call saying they need to talk to us back up at the OR. So of course I'm inwardly freaking out (although trying not to appear that way), thinking something's gone wrong. Well, actually, the doctors just needed a little assistance from us not-at-all-medically trained parents. They needed to put a catheter in that Tabitha will wear for the next couple days so we wouldn't have to worry about cathing while she's recovering. Well I guess they're not used to cathing girls with abnormal anatomy. Because of Tabitha's birth defects she doesn't have all the usual parts, so they wanted to make sure they were finding the right spot for the catheter. They didn't bring us into the OR, just verbally confirmed how to do it. I guess we HAVE learned a lot these past few months...who would've thought we'd be advising the medical professionals. :)

Anyway, after they got everything where it needed to be, they called the waiting room to let us know they were starting the surgery. It took about 2 hours, and Dr. Ahn came out to tell us that everything went very smoothly. Her spinal cord is now untethered! (I'm sure it's very happy to have been set free.) She has to stay on her belly all night, then tomorrow should be able to roll over and sit up. We need to keep the area dry for a week, but other than that she should be able to resume normal activity.

So we went back to the recovery room to see her. She took a long time to wake up, which is good so she can sleep off some of the effects of the anesthesia. But that meant we were in recovery for almost 3 hours. When she woke up she downed a good 20 oz of water. She wanted more, but the nurse made her stop to be sure she could keep it down. She also made her take a breathing break from guzzling through the straw because she was drinking so intently her oxygen level dropped to the flashing red point! She dozed back off to sleep then awoke desparate fore more water. I think she had 2 and 1/2 big cups of water in that first hour. Finally we were taken to her room. It's a 2-person room, but right now it's just her in there. Heath has a nice chair that folds out into a bed to sleep in. I'm sure he's going to be missing his Sleep Number tonight! But he did want to be the one to stay....I think he doesn't think I could handle it. (which could be entirely true if she wakes up and still needs to stay on her belly) But anyway, she was still peacefully sleeping, enjoying her pain meds when I left. And so far no nausea. They did use morphine again, but are also giving her something that counteracts the side effects, so hopefully she won't get sick this time.

The boys wanted to stay another night at Mommom & Granddad's, and since it was so late I let them do that, and I'll go get them in the morning. I'm a little lonely without my family home tonight, but it'll sure be nice to sleep in tomorrow! I don't remember the last time I had no kids to wake me up! Hopefully the dog doesn't take their place. (I must say I'm very proud of her...she's been locked in the house from 7am to 9:30pm, and had no mishaps.)

So, although it's been a much longer day than we planned for, we are definitely thankful that all the important things went well, and that's one more surgery we can check off Tabitha's list. I know a lot of people think it's so much to go through, but honestly....this is nothing. One family near us in the recovery room had a little boy who went through surgery, got chest x-rays, and was starting chemotherapy the next day. Another one had had brain surgery. A few more had tiny infants in there all strapped to various tubes and instruments bigger than they were. Tabitha, on the other hand, is having surgeries that have nearly-guaranteed outcomes, are not life-threatening, and have short recovery times. We have so much to be thankful for.

Upcoming Surgery

Tabitha's "untethering" (spinal cord surgery) is scheduled for Monday the 29th at 10:20 with Dr. Edward Ahn. She'll spend one night at Hopkins. Heath and I are both going for the surgery, but just one of us will stay overnight.

She had her pre-op appointment a few days ago. Boy was that fun. I thought it'd be a quick in-and-out . . . drive to Baltimore, spend a half hour, drive all the way home. But lo and behold we left our house at 9:15 and returned about 2:30. Most of the time was waiting, but there was a lot to be done there as well. The most "exciting" part was where two nurses and I had to hold her down to get her blood drawn. As soon as the nurse put her gloves on, Tabitha started crying, screaming, and thrashing around. She got herself so worked up that by the time we actually got to the needle I had trouble holding her little 30-pound body still, and had to use my arms and legs to hold her still on my lap. She finally calmed down, until bathtime that night when I took the bandaid off (why they have to use those bandaids that take the skin off with them I'll never know). Anyway, the boys were great and very patient through the long morning. It was just me and the kids so I was very grateful for their cooperation.

So everything's set for Monday, as long as Tabitha doesn't catch a cold or anything. We'll be heading for Hopkins at 7am,so the boys are looking forward to spending the night before at Mommmom and Granddad's. I did recently find out that it's possible (though not likely) for the cord to retether. Please pray that it doesn't and that everything goes smoothly with the surgery, including her recovery. Thanks so much.

Fast Food Woes

Tabitha came to us loving fruits and vegetables and not really wanting much sugar. Today we had to go through the drive through after church, much to the kids' delight. First Ethan says, "Yay McDonalds!" and Jesse echoes him. Then we hear this little 2-year old voice shout out exuberantly, "Yay McDonalds!" Most of the time we can't understand much of what she says, but THAT was crystal clear.

What can I say....I guess she's truly an American now.

Medical Update

A lot of people have been asking about Tabitha's medical issues and what we've found out. Well . . . in day to day life she's very healthy, and most people would have no clue she has any problems! But . . . she does have some pretty serious things that still need to be taken care of.

We finally got her Chinese surgery records and got them translated. You'd think they'd just automatically send those along with the child, but no--that would be too easy. Anyway, Tabitha's urologist (Dr. Gearhart at Johns Hopkins) said the information was very helpful. At least now we know what was done while she was still in China. To make a long story short, she was born with common cloaca (which means having only 1 tube and opening instead of the 3 a girl should have), and it was partially repaired in China. We think that her being unable to urinate was a result of the surgery, because there's nothing in her notes about it until after she had surgery. Dr. Gearhart said that they won't do any kind of bladder surgery to attempt continence until she's 5. So we're hoping and praying that it'll be fixable when she's 5. But at the same time, emotionally I'm going to plan on it being lifelong and just be very pleasantly surprised if it isn't.

The more immediate next steps are 3 surgeries. First of all, the rectum that the doctors in China formed for her is not positioned exactly right in relation to the muscles. So she'll need surgery to move it slightly. We also just saw a neuro surgeon (Dr. Ahn) and found out she'll need surgery for tethered spinal cord. Dr. Ahn explained that the spinal cord is supposed to be free within the spinal column, but on Tabitha there are some fibers holding it down. This isn't causing any problems yet, but as she grows bigger it would. He said this is not a risky surgery and not to worry. She will have to be in the hospital overnight, but after that there should be no further problems caused by it. We still need to see the hand surgeon to schedule surgery for removing the extra digit on her thumb.

So after 31 years of life never going to a hospital except to be born, to give birth to Jesse and to visit a couple people who had babies, this is sure a different experience for me! I think I've been to doctors' offices more in the past 4 months than in the entire rest of my life! Our immediate prayer is that we can get all the doctors coordinated for scheduling these surgeries, and possibly be able to do more than one at a time. Dr. Gearhart had said that may be possible, and we're hoping that it is--much less trauma and stress to do everything at once.

We are very thankful for the doctors we've met with so far. They've been great! And we're very happy that Tabitha is in good health besides these "little" major problems. =) We appreciate your prayer as we get all the surgeries scheduled. Pray for efficiency by the people in the scheduling office. (Her MRI took a couple months to schedule!) Pray for coordination of the doctors and that they might be able to combine surgeries. Pray for peace for Tabitha and all of us in handling all of this, and of course for safe and successful surgeries. I'll update again when we get things scheduled. Thanks!

A Brilliant Idea--Part 2

8:00 to 7:00 WITHOUT A PEEP!

And she even woke up happy!!!!!

Let it Snow!

We may have set a new record for snowfall in the area. I didn't hear the final verdict on whether or not we beat the record, but our town had 33" yesterday! Today it's sunny, and everything outside is just glistening and sparkling like a landscape of diamonds--absolutely gorgeous! Ethan has been out there working right alongside Heath to shovel the driveway and (even as I type) is begging for everyone to come out and play with him. Heath worked all last night plowing a parking lot and plans to do the same thing the next few nights. Maryland is really not equipped to handle this much snow, so the roads are still really bad, and most things are cancelled for the next few days. That kind of drvies me crazy, but (if the kids would stop fighting) I really don't mind being stuck at home enjoying the scenery. It's so peaceful and quiet and clean and fresh outside . . . this is what winter is meant to be!