We just got home about 45 minutes ago. We weren't expecting to be home until tomorrow, but everything went very well. We got to the hospital at 4:30 yesterday morning, leaving the staff plenty of time to put her in a gown, weigh her, and put her bracelets on and giving us plenty of time to sit around and wait. Alison's surgery was scheduled for 7:00, but they didn't take her back until around 7:15. At that point, it was off to the waiting room for us. Dr. Schell came to tell us that she was in Recovery and tell us how the surgery went at about 8:15. We got to see her shortly after 8:30. She was screaming her head off, not so much from pain, although that was part of it, but from disorientation while waking up from the anesthesia. She was able to eat by 9:30, and did pretty well. Then the waiting began, because she was to go from Recovery to Neurosurgery ICU, and there were no beds available in NICU. I stayed with her for a while and Kevin got something to eat, then he stayed with her so I could get something to eat. The hospital she was in does not have a Pediatric unit anymore, so they had to do some searching to find her a crib, not that she wanted to be laid down once they finally did find it. She slept for the majority of the day, and was in a fairly good mood when she was awake, once we got her Tylenol dosage figured out, and once we were given the ok to give her Motrin, things were even better. She finally got a room at 8:00 last night, almost 12 hours after her surgery was finished. One gentleman complained about the fact that he had been waiting to be moved from recovery for 2 hours and the nurses' aide politely pointed out the fact that "that little baby over there has been waiting for a bed since I got here this morning." He didn't say another word about his wait. We were able to get her down for the night by around 11:30, giving me the chance to get a few hours of sleep before she started getting restless. I finally resorted to holding her for the rest of the night so we could both get some much needed rest. Her leads kept coming off and setting off her alarms, which kept waking her up. Dr. Schell came to see us this morning and, since she was eating well, had her pain controlled by Tylenol/Motrin, was not running a fever, and was acting normal, told us she could go home today after one more round of antibiotics if we were comfortable with that. Otherwise we could have waited until tomorrow. She got her IV out after lunch. Because she inherited her mother's terrible veins, they had had to put it in her head, above her left ear, and they used enough tape to secure Texas, so getting it all off was pretty traumatic because there was hair involved. Once that was done and her dressings were changed, we were set all set to go, as soon as our ride (Kevin) arrived. So we're home now, and she's doing great. She goes back to see the doctor next week for a check-up and to get her staples out.

Alison had her appointment at the Spina Bifida Clinic on Monday. We've got some good news, some not so good news, and some fun news.

First the good news. During the course of the exam, Dr. Barr did a lot of work with Alison's legs, feeling the various muscles and how they were working, and he said we're looking at function being farther down then originally thought, probably S1 possibly S2, and she will definitely be a walker. He also now thinks that she probably won't need physical therapy or need to have any leg braces, or might just need to have something to stabilize her right foot.

Now the not so good news. Alison definitely needs a shunt. The surgery is scheduled for March 18. It's a very short procedure (should only take 15-20 minutes) and she should only be in the hospital for 2-3 days. Hopefully she will be one of the lucky ones who never has a problem with her shunt.

And finally, the fun news. Alison is now part of a study on how leg control develops in babies born with Spina Bifida. Basically, she gets reflectors put on her hips, knees, ankles, and feet and she gets held up and "walked" across a tabletop and then held over a baby sized, waterproof (because she does all this naked) treadmill and encouraged to "walk." It was very interesting to see. She did a lot of stepping, and did her best stepping at the second highest speed of the treadmill. We'll be going back again in June.

We had an appointment with Dr. Barr today. Everything is ok. He looked at Alison's MRI and her ventricles are bigger, but they are proportional to the CT scan. We just need to keep on an eye on her head size. Everyone have a wonderful New Year.

Alison had a visit with her pedatrician for a check-up and to get shots. Dr. Mauch was real happy with her growth and weight gain. Alison is now in the 10th percentile for each category. The only problem was the growth of her head. According to the charts, her head measurement puts her in the 95th percentile. That is kind of big for her age. Hopefully the head growth will level off.

We called Dr. Schell's office to find out why we had not heard anything about Alison's MRI. Dr. Schell will not be back in the office until Thursday, 12/19/02, so we won't know the whole story about the MRI until he returns. However, we were told that if there had been anything to worry about, we would have been called immediately, so it appears that Alison's MRI turned out ok.

Alison had her baseline urological tests at U of M today. Her bladder is slightly thickened, but other than that she passed all the tests with flying colors. She was seriously pissed during the VCUG, but who wouldn't be when you're not quite 4 months old and are strapped to a rotating board with your hands strapped back by your ears? Kevin could hear her screaming clear across the hall. We do not have to go back for a whole year unless complications arise before then. Yahoo!!

Alison had an MRI done today. We had it done in Saginaw, and she had to be sedated for it, so she needed to not sleep on the way to the hospital. Keeping a tired infant from falling asleep during a 30 minute car ride is no easy task. She went to sleep shortly after receiving the meds to sedate her and easily slept through the almost the whole scan. She did start waking up just in the last few seconds of the last scan. The results should be back in about 3-4 days.

Alison went in for a weight check again today. She gained 1 lb in 4 days!!! Obviously there is a supply issue here. There is definitely no lack of appetite on Alison's part, that's for sure. Instead of the 25 ounces a day she should have been taking in, she was taking in between 34 and 36 ounces!

Alison went in for a weight check today. She didn't gain an ounce. They are doing some blood work to rule out anything else, and we have to collect a stool sample. Debbie now has to pump and then feed Alison from a bottle so we know exactly how much she is eating. She should be taking at least 25 ounces a day. She goes back on the 6th for another weight check. The doctor called the Spina Bifida clinic today because Alison's head circumference is a little bigger than expected, and he was concerned that the lack of weight gain is caused by her hydrocephalus worsening. More to come on the 6th.

Alison went for a weight check and now weighs 9 lbs, 1 oz and is 22.5" long. The doctor is concerned about her weight. She has dropped below the 5th percentile. She did manage to gain 7 oz in 2 weeks but that is not enough. The doctor did a urine test to check if a UTI (urinary tract infection) was causing her to not gain. The test came back negative. Also, the doctor has us back on the 3:00 AM feeding to see if that will make a difference. Alison goes back in on December 2nd for another weight check. Lets hope she puts on some weight.

Alison is one month old today!! We had our first appointment with Dr. Barr. He did a quick evaluation of her head and her leg movement. He was encouraged by what he saw, so much so that he only wants to see us back in 3 months for another evaluation. While we are anticipating that Alison will eventually need a shunt, Dr. Barr said that they have not yet had to shunt any of the their fetal surgery patients. We'll see. We also met with the urologist and are scheduled to got back in December to do a base line evaluation of Alison's badder and kidneys.

Today was Alison's follow-up appointment with Dr. Schell. Nothing has changed. This was excellent news. Dr. Schell even commented that, in his opinion, having the fetal surgery was for the best in our case. We are going to Ann Arbor on September 16th to see Dr. Barr, who runds the Spina Bifida clinic at the Univerity of Michigan. Until then keep praying.

Alison is home!!! We were able to bring Alison home tonight. She has jaundice and has to have a Bili-light at all times (unless we are going to get blood drawn), but besides that everything is fine. We got the prelims on the CT-scan that was run yesterday. It appears that Alison's hydrocephalus is moderate, which means she will not need to have a shunt immediately. We have an appointment with Dr. Schell on September 5th for a follow up. Hopefully everything will stay the same and she won't need a shunt.

Alison is here!! She was born August 16 at 8:54 PM, weighed 6 lbs, 5 oz. and is 18 inches long. She scored a 8 and 9 on her Apgars. Although she is in the NICU and had some breathing difficulty at first, she is doing really well and only had to be on c-pap for 12 hours before being able to breathe completely on her own. She's the biggest baby in her part of the NICU nursery!!

Week 9 of HRC. It was nice not having an appointment last week. It's really a drag to hustle around getting ready in the morning so that we get there on time, only to have to sit and wait for half an hour or more. I understand that there are other women who are having a lot more trouble than I am, but it would still be nice to have at least one appoinment where we show up, get in get out and go home in less than half an hour. But enough whining.

I am 34 weeks this week. We've made it to our second goal, the average gestational age at delivery for babies who've had fetal surgery. Here's hoping we keep going and make it to 37 weeks. I had my first NST this morning. Alison passed with flying colors. I'll have one every week now, before my regular appointment. My regular appointment today was fine. My blood pressure was ok. I gained 2 1/2 pounds. Still no swelling (yay!). Alison's heart rate was in the 160's and I'm measuring 3 weeks ahead now.

Week 8 of HRC. I am now 32 weeks! We've made it to our first goal, the age Dr. Bruner gave us as break-even. The bloodwork and urinalysis of last week showed came back fine. My blood pressure was back to normal again today. I've lost a pound and a half. I think I've noticed a trend with my weight, and I wonder if it's being caused by fluctuating amniotic fluid levels. I still have no swelling (thank goodness). Alison's heart rate was in the 150's again, and I'm now measuring 2 weeks ahead.

Week 7 of HRC. Today we had some excitment, unfortunately. My blood pressure was a little high today. I really think that everyone overreacted, but I went and had blood drawn and I have to do a 24 hour urine test. It's really a pain because I drink a lot of water (in an effort to make sure dehydration doesn't add to our amniotic fluid level problem). We have a blood pressure monitor here at home, and according to it, my bp is back within normal ranges. I'm to take my blood pressure a few times and report the results to Dr. Wechter in the morning. Other than the blood pressure issue, things are fine. I've gained 2 1/2 pounds, my hemoglobin was fine (I really hate getting my finger stuck like that!), I'm not having any swelling (despite the heat we've been having this summer), Alison's heart rate was in the 150's and I'm still measuring a week ahead.

Week 6 of HRC. Another uneventful appointment. My blood pressure is still fine. I didn't gain anything, but I didn't loose anything either. Alison's heart rate was in the 140's again, and we're back to measuring a week ahead.

Week 5 of HRC. We're still plugging along. My blood pressure was fine. I've lost a pound. Alison's heart rate was still in the 140's and at 29 weeks, I'm measuring 29 weeks. Gotta love these "boring" appointments.

Week 4 of HRC. Everything is still going well. My blood pressure is ok and I gained another 3 pounds. Alison's heart rate was in the 140's again today, and I'm measuring a week ahead now.