Cassie is a wiggle-bum. Her feedings are up to 3 cc every two hours. It is still the lactose-free. We will be getting the blood test tomorrow to see if we are carriers of galactosemia.
Elena loved being held by Dad tonight. She is up to 3½ cc of breast milk (½ strength) every two hours.
Andrew had a good day. Mom got to hold him. He was really upset when they put him in her arms and they talked about giving him sedation, but then Mom snuggled up to him and talked to him and he calmed right down. The nurses complimented Mom and she felt really good about being able to comfort him. While he was being held he also wanted to explore so he kept opening his eyes and looking around. He is doing well on his feedings and gaining weight. There have been no new orders on him for a couple of days and that is a good sign.
Cassie is also gaining weight and doing well on the lacto-free formula. One fear we had was that she would not thrive on that formula since it is not a preemie formula, but she is! She likes being snuggled into her bed, probably because she was snuggled between her brother and sister in the womb. Mom got to hold her and she also wanted to explore with her eyes. The nurses say she is very definite in her movements and she is usually mellow, but will let you know if she does not like something.
Elena has now graduated into regular preemie diapers. She is the biggest right now. The nurses also continue to attest to her feistiness. Dad got to hold her today and they both loved it. We think that Elena looks more like Mom. She loves her feedings. It has been ½ strength feedings since the beginning and in a few days she goes to full strength and a lot more volume. That makes us really happy.
Cassie: 2 lbs, 7 oz.
Elena: 2 lbs, 12½ oz.
Andrew was put on CPAP today. One step off of the respirator. He hated it from the moment they put him on it. His heart rate went way up. Mom tried to calm him down, but he was just crying. Because he has had the tube in for so long, his cries were really raspy. He was given some sedation and that helped to calm him down some. No one got to hold him today because he needed to calm down.
Elena got held by Mom today and she was very sweet. She is currently the biggest of all three.
Cassie extubated herself and was re-intubated since she is not yet strong enough to be put back on CPAP. She is tolerating her feedings of lactose-free formula well. Dad held her today.
Cassie: 2 lbs, 8½ oz.
Elena: 2 lbs, 14 oz.
Andrew was put back on the respirator today. No big shock. He cried the whole time the CPAP was on and was wearing himself out. We will try him again later. When Mom went to visit him at night he had his eyes open and was just very awake and alert. He is cute with his eyes closed, but with them open he can melt anyone's heart!
Cassie and Elena are tolerating their feedings well and will go up to 3/4 strength tomorrow. They are very beautiful girls. The Daily Herald came today to take pictures for their article which will print in two weeks. The photographer shot only the girls as Andrew was in a fit (before he got his tube put back in.) Cassie had her eyes open for quite awhile. She likes her nurse, Carolyn. Anytime Carolyn would talk she would open her eyes.
Cassie: 2 lbs, 10 oz.
Elena: 2 lbs, 9½ oz.
Andrew had a quiet day today. He is loving being back on his respirator. There are not going to be any changes in his orders for now. Dad held him today and he had his eyes open for him the whole time! When we went back to the hospital at 11:00 we were informed that Andrew had pulled his tube out and had the tube in his hand and was waving it at everyone. It was decided to try him on the nasal CPAP again. We arrived 20 minutes after he had been put on and although he was not happy, he was more calm about being on the CPAP than he had been. Mom spent the whole time with him and held him to try to make him feel good about the situation. While she was holding him he needed a diaper change, but before they could get to him he urinated on Mom. She didn't mind so much, she just thought she better get used to it.
The great news is that Mom is a carrier for galactosemia, but Dad is not, so Cassie cannot have it. She was started on Mom's milk at 3:00 this afternoon and tolerated it well. Tomorrow she goes up to full strength of Mom's milk. Mom held her today and she had her eyes open for a long time because she had the hiccups. Her sodium level is looking a little weird so they ran a cortisone test to see if it was a deficiency in that. That is easily fixed by giving her some hydrocortisone and then tapering off. Preliminary results show it is probably not going to be treatable, so they will compensate for the sodium in her feedings.
Elena loved her hold with Mom today. The occupational therapist was there and showed Mom a bunch of things that she could do with her. She is still the feisty one. As you can see, she did lose a lot of weight, but she had been looking a little puffy and had probably been retaining water. She had a lot of wet diapers yesterday and that accounts to the weight loss. Mom talked to the nurse practitioner about co-bedding the girls because the girls' nurse had said that the girls love being touched and talked to. However, because they are both still on respirators it would not work with them being in incubators. So, the compromise since Mom was pretty set on that was that now the babies can be held twice a day instead of one so that they can have that special closeness.
We pray daily for their strength and that they can grow well and be taken off of the respirators soon. We hope you will too.
Cassie: 2 lbs, 12½ oz.
Elena: 2 lbs, 12½ oz.
Andrew has been doing well on the CPAP. We again spent our time there comforting him and letting him know that getting off of the respirator was a good thing. Mom and Dad each held him today as now we get to hold the babies twice a day instead of once.
Cassie is being slowly weaned off of her respirator. She is tolerating her feedings well. We are so happy that she is getting breast milk now. She was having a problem stooling while on the formula. The nurses would have to give her a laxative so that she would have a bowel movement. Since she has been on Mom's milk she has been stooling well on her own.
Elena had a fun night. The tape that holds her respirator tube to her face was very loose because she had been spitting up. While Mom was holding her she grabbed her tube and pulled it and started gagging. Lynn, the respiratory therapist, called the neonatologist and got approval to put her on nasal CPAP. We were glad that Mom was able to hold her the whole time it was getting put on because we think this made Elena aware that it was OK to be on the CPAP. The whole time they were getting things set up we held oxygen over her face and she had her eyes wide open and was just happy...no crying or temper tantrums!
Cassie: 2 lbs, 11½ oz.
Elena: 2 lbs, 12½ oz.
Andrew is doing well on the CPAP. He is holding his breath sometimes so they are going to give him some caffeine to perk him up and make his brain remember to breathe.
Cassie is being slowly weaned off of her respirator. When she is suctioned she has had some pink sputum and she is appearing somewhat sick so they are going to do lab studies in the morning. They are going to check a blood count to see if her white blood cells are up. They will also check a culture on her ET tube.
Elena is doing well on the CPAP. She has been having many episodes of apnea where she forgets to breathe and her heart rate drops into the 60's as does her oxygen saturation. It is pretty scary because we have to shake her to perk her up.
Both girls had their PERC lines removed which means that they no longer have a permanent IV. Drew will have his taken out tomorrow.
E-mail us at dls52@email.byu.edu.
(c) Dane Seeley, 2000