Casey's Surgery Update

Casey has had a really busy week. She got all settled in her new bed at UCLA around 1:AM Wednesday morning. Tim had to be at work by 8:00 Wednesday so we did not get much sleep. I dropped him off then went up to UCLA to spend the day with Casey. She and I had a nice relaxing day. She had to do a few tests, but for the most part they had her just resting before surgery the next morning. She and I read some of her favorite stories, I held her a lot, and we just hung out. I went and picked up Tim after work and we went back up after dinner. Casey and her dad spent some nice holding time together that night.

Surgery was scheduled for 7:30 Thursday morning and they told us they would be coming for her around 6:30, so we decided to get to the hospital by 5:30 so we could hold her and be with her for a little while before she had to go. Around 7:00 the surgery team started to get her ready. We talked with the team a bit and were sent to the waiting area. They told us it would be about 2 hours and that they would either call or come for us. About 2 hours went by and we got a call. The nurse told us that things were going slow due to her liver being enlarged. About 2 more hours went by and we got another call. The second call they told us that they were finishing up and it would be about 30-45 more minutes. A little more than 1 hour went by and Casey’s surgeon came out to talk to us. The enlarged liver made it very hard for him to get to the stomach laparoscopy. While he was in doing the first procedure he had a hard time getting to the area, and Casey started bleeding. Since he could not get around he could not stop the bleeding. Casey had to get blood during surgery. Casey also had a hard time breathing when they would fill her abdomen with air so they had to stop a few times to help her breath. They finally got the fundo done and started on the g-tube. The surgeon tried all he could, but just could not get around the liver. He ended up having to cut her open afterall :( The bleeding turned out to be minor once he got her open. Also, once he opened her up he was able to get the g-tube in place with out any more complications.

It was a really hard morning for our little girl, but in the end she did get all of the procedures that she needs. The respiratory group decided to be on the safe side that they would keep Casey on the ventilator for a little while after surgery. Since she is still intubated and will remain this way for a little while she is being sedated. She sleeps a lot, but she is not in pain. The open surgery requires a little more recovery time, so I think it is probably a good thing that she is sedated during the first few days. I don’t think I could handle seeing her in pain.

The NICU is starting to wean Casey off the ventilator, but it will still be at least a few more days before she is off of it. When she is intubated we can not hold her, so Tim and I have just been sitting with her and rubbing head and back and talking to her. We can still give her kisses, I just can’t pick her up. They took off her bandages today as well. The cut is closed very clean so hopefully she won’t have a bad scar. The tube hole is not very big at all. She looks really good. She is exhausted, but she is doing well.

Thanks to everyone for your calls, emails, etc wishing Casey well during her surgery. We will post more after we get her off the ventilator. After she has had some time to recover we will post some new pictures too, she is 8 pounds now :) Our little girl is so strong, and growing so fast.

Casey moved to UCLA Westwood

Casey has been transferred to UCLA Westwood - they decided to move her late last night just to make sure their open bed didn't get filled, since they are so busy. She handled the transport well and settled into her new bed fairly quick and is making lots of friends with her new nurses and doctors.

Her surgery will be early tomorrow morning, probably around 7:30am and will last 2-3 hours. Afterwards, it could be another couple hours before we can see her.

We're sure she is going to do great - she is such a fighter and has made so much progress over the last few weeks. We are nervous since it's surgery but also excited that if she is able to feed with the g-tube that we can start thinking about her coming home sooner rather than later.

4 Weeks Old

Casey is 4 weeks old today. She is getting so big. She has passed the 7 pound mark and has grown more than 2 inches in length. She gets bigger and cuter everyday.

Casey had a big week. Her surgeon requested an upper GI before her surgery. To do this test they had to take her down to radiation. Since they were taking her down they decided to get her second CT scan as well.

The upper GI was really hard on Casey. She has been getting 4 cc’s during her feedings, but they have not been able to go past this amount with out her spitting up. During the test they had to give her barium and then follow it with water. In total the nurse said she ended up having to give her just under 30 cc’s of water. She spit up some, and was so tired all afternoon. The doctors decided to give her system a rest and hold off on feeds for at least 24 hours.

On Friday the doctors told us they were going to wait another day before starting feeds. Since she only gets 4 cc’s, and since they have to stop them 24 hours before surgery this week, Tim and I asked if there was any benefit in starting back up at all or if she would be better just staying on 100% IV until surgery. The doctor agreed that there was no benefit and so they removed her nose tube. This was the first time we saw her with out any tubes on her face. She looks great! She breathes a little better too. They still have to suction her, but not as often.

The neurologist came by on Friday as well. She had not seen Casey in a while and seemed pleased with the progress Casey has made, and with how much she has grown. She reviewed the CT and said that the swelling is gone, which is great to hear. She was not able to give us much more. She still wants to give Casey time to recover as much as possible. In addition to time she wants to have a few more tests run. After Casey gets back to St John’s from surgery she wants to have an EEG done. This test will show her if it is safe to start getting Casey off her seizure medication. Then when Casey is getting ready to come home she wants to do an MRI. This will show her any damaged areas. Even after the MRI we may have to wait a while to really know the extent of any damage that was done. The brain is still a mystery in so many ways and it just takes time. Everyone is still very hopeful.

For now Casey is resting and getting ready for her transfer to UCLA on Wednesday and surgery on Thursday. We will try and post later this week to let you all know how the surgery goes and when she will be moved back to St John’s.

Surgery at UCLA Westwood

Well, Casey is officially no longer a premie - today was her due date, and last night she was right at 7lbs too!

Once space opens up at UCLA Medical Center in Westwood (also called Mattel Children's Hospital), Casey is going to be transferred for a gastric feeding tube and possibly a Nissen fundoplication. Our neonatologist and pediatric surgeon want to do the surgery at Mattel's in order to perform the procedure laparoscopically and reduce recovery time.

We went over to Westwood and toured the NICU yesterday and were pretty overwhelmed. St. John's is brand new, quiet, and isn't a teaching hospital - Mattel's is the opposite. We know Mattel's is where she will get the best surgery for her, so we are just hoping it won't be for long. Casey is definitely used to the nurses and environment at St. John's.

We expect her to be there for at least a few days and hopefully not more than a week, depending on how quickly she recovers. After she stabilizes from surgery, we are getting her moved back to St. John's until she is ready to come home.

Currently they expect Casey to be moved next Wednesday and are trying to schedule the surgery for next Thursday (May 25th), but it all depends on availability.

Tomorrow Casey is having an upper GI test done so the gastroenterologist can consult with the surgeon on the Nissen details. While down in radiology, Casey will also be having her second head CT scan to compare with the first one she had a couple weeks ago. This will help the neurologist with making a better long term prognosis.

That's about it for now - will post more after we have test results and transfer dates...

Eyes cracking, oxygen off, reflux test

The last couple of days have been pretty good. Casey started to crack her left eye open just a little bit - you can see her eye occasionally drift in or out underneath but not too much movement yet. We are hoping she starts to open the other eye as well and moves her eyes some more soon.

Casey has been doing well with her breathing so they decided to take her off the oxygen again. She looks so much better without the nasal canula, especially with the tube for her feeding having to always be in her nose.

Since she has had problems feeding and spitting up, the doctors did a "reflux test" last night for twelve hours. They basically put a probe in her nose down to her stomach and monitor the pH level to check if feeding is causing too much reflux. Based on the results, they could recommend moving to a gastric feeding tube (requiring surgery) sooner than originally expected. If the pH test shows low or moderate levels, it may just mean we have to keep taking feeding very slow due to the risk of aspiration. Even if surgery is recommended, we still would have to research surgeons and types of g-tubes to make sure we are comfortable with the procedure, so nothing would be happening for a little while.

2 Weeks Old

Casey is 2 weeks old today :) Tim and I picked out a few little shirts for her this weekend, and she looks so cute in them. She is not quite big enough for new born clothes, but preemie fits her perfectly. We found a store near our house that has some really cute stuff for her.

Tim has talked to a few other doctors at other hospitals just to be sure that there is not something that they would be doing that our hospital is not. We are getting the same response from everyone, just wait. It's really hard to wait, and some days are better than others.

We expect to have some more tests run later this week, but nothing is scheduled yet.

Casey had a hard time breathing Saturday morning so they put her back on the nasal canula. Since they started the oxygen back up she has been doing a lot better with her saturation. They have been backing the oxygen off gradually and she has been able to maintain a healthy saturation level, so hopefully they will be able to remove the canula soon.

The doctors also stopped her feedings on Saturday morning. As we increased the feedings from 1cc up to 10cc (gradually over many days) she started to spit up around 6cc. She would not spit up with every feeding, but she spit up a few times. On Saturday morning they did an x-ray and saw that she had aspirated on some of the spit up. Until her lungs can clear out the fluid they will hold off on the feedings. They are checking her lungs daily to see when the fluid is gone. Once the fluid is cleared out they can start the feedings again. They expect it to be a few days.

Casey was feeling bad on for a few days (most likely due to the aspiration), but today was a much better day. Her fever was gone, and she was not nearly as stiff as she had been. I think she is feeling a lot better today.

We got to give Casey her bath tonight and read her a story. We will post more later this week unless we have an update to post sooner.

Casey and her bears

Casey got a couple teddy bears and the nurses let us leave in the crib with her. I got this cute shot of her hugging one of them.

Today they reviewed xrays and decided to do a small amount of stomach feeding through her nose tube. They will monitor Casey closely to make sure she is able to digest safely and if so will increase her breast milk and decrease her IV intake.

A second EKG is coming today or tomorrow to check that small irregularities in her heart are improving from original one last week. Next week they are planning to do new EEG and CT scans as well to gauge progress.