Drew was fed some breast milk today, 1 cc every two hours. He did well at first, but after the third feeding he spit up more bile than he had been fed. So, we will try again later. Grandpa Claudio was able to hold Drew today.
Cassie is back on the CPAP. She was trying too hard to breathe on the nasal canula. She is much calmer now.
Elena is very feisty. She had to be sedated as often as they can. She opened her eye that was fused and it is very cute to see her with both eyes open. She may begin feedings again next week.
Drew is doing better today. He did not have any bile so he may restart his feedings soon. He had an episode of a high CO2 and a low O2 early in the morning but they were able to stabilize him. His weight is up. He is very cute. His personality is much different than his sisters' as he is very mellow and is content to sleep most of the day. He rarely fusses. His hair keeps growing. It is getting thicker and darker. Daddy held him tonight and he loved it!
Cassie is doing much better on the CPAP. She has been sleeping better since off of it and since the babies grow while they are in deep sleep, that is a good sign. Her weight is up. Mommy held her tonight and she practiced her grasping reflex.
Elena stunned everyone this morning when she pulled her own ventilator tube out. She must have just been tired of it. It was then decided to go ahead and try the CPAP again. (She only tolerated it for an hour last week.) Anyway, she did great and is now on the CPAP. She appears much happier. Her weight is down but she has been having some great bowel movements so it is probably because of that. Daddy held her tonight. Now that she is extubated we can hear her cry, it is very cute.
It was a harder day for the girls. We received a call from the nurse practitioner that Cassie and Elena had to be taken off of the CPAP and put back on the respirators because their CO2 levels were too high. We went down to the hospital just as they were finishing switching them to the respirator. An hour later, Lorena was looking at Elena and noticed that she was gagging. The nurse came over and Elena's heart rate dropped and alarms started sounding. It seems that her tube had begun to come out. So, they had to take out that tube and put a new one in. It was a scary time for us, but the staff handled it perfectly. If the girls' CO2 levels remain low, they may begin feedings. We think that it would be a good idea for them to gain some weight and get stronger and maybe then they will be prepared to be taken off of the ventilators.
In other news, Andrew had a quiet day. He had some feedings, 1 cc every two hours and is doing very well. Dane held him last night.
All of the babies are very, very cute. We love them very much.
Cassandra's PKU state blood test came back with a possible concern. She may have galactocemia, an enzyme deficiency that causes sever lactose intolerance-she would have to be on a special diet for the rest of her life. It is a hereditary condition that has nothing to do with prematurity. They want to test us to see if either of us carries the gene. If not, they will retest her to be more sure. This is not the greatest news, but it could certainly be much worse. If she has it, it is something that we will have to work with as a family. There are so many lactose-free products available. They started feedings again with her, using a lactose-free milk just in case.
They started feedings with Elena as well. Her blood pressure and heart rate have been high lately, so they are doing blood and urine tests to see if there is a problem with her kidneys. They are also going to sedate her for 24 hours to see if the problem is just that she just needs a bit more sedation to keep calm, which would surprise no one. Maybe she just takes after Dad with the high blood pressure. Some great news: Elena, no surprise, pulled her tubes out again. This makes it 2 days in a row. Anyway, instead of reintubating her, they decided to try her off the respirator. An hour later (close to midnight) she was doing great. They just have her on the nasal canula which gives her oxygen. Hopefully she will keep doing well so she can stay off the respirator permanently.
Grandma Charlene held all 3 babies. It was fun for all 4 of them. She commented that it is surprising how different their personalities are. It is also exciting to see all 3 doing so well with feedings. Hopefully they'll now be able to really fatten up.
Cassie is still on the lactose-free formula. She will be for quite awhile. We are going to have a blood test on Monday to see if we carry the gene for galactosemia. We both have to be recessive carriers. The test should come back in two weeks. All it will do is rule it in. If it shows up negative, Cassie will still have to stay on the lactose-free formula because she cannot be tested until 120 days after her last blood transfusion. The babies have to have transfusions often to make up for the blood that is used for lab tests. So, it may be a while before she can be retested. She had a head ultrasound because her hematocrit had gotten so low, which meant she had lost red blood cells, and they were wondering if it was caused by a bleed in her head. Preliminary results showed a bleed, but it looks like the same one she had before. Mom got to hold her today. She now weighs 2 lbs, 5 oz.
Elena was taken off of the canula and put on CPAP. Her blood gases were showing high levels of CO2. We found out today that the staff co-bedded Andrew and Elena, which means they put Elena in Andrew's incubator. Elena really enjoyed it. Andrew didn't like it as much and after a few hours his blood pressure started going up so they put Elena back in her incubator. I guess she was really, really angry when they took her away from brother. They got some pictures for us and we will put them on the site soon. She now weighs 2 lbs, 10 oz.
Cassie had a good day. Dad held her. Her feedings are going well. She should go up on her protocol tomorrow.
Elena was put back on the respirator. She was just working too hard. Mom held her. Mom and Dad both gave her a bath and while cleaning the diaper area she had a bowel movement. Needless to say, we changed the bedding!
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(c) Dane Seeley, 2000