Cassie: 4 lbs, 3 oz.
Elena: 4 lbs, 8 oz.
Andrew had his car seat trial today. He has to be able to sit in his car seat for at least ½ hour to be discharged from the hospital. The first time we put him in he had just eaten and was not too thrilled with being in there. He spit up half of his feeding. Dad did a good job of cleaning the car seat while Mom cleaned Andrew. He was put back on trace oxygen because he was having trouble during his feedings and whenever he became agitated. So, we will be bringing him home on oxygen. Hopefully, once he gets home and grows he will be able to wean off of it.
Cassie is still doing well. They took her TCM monitor off. The TCM measures CO2 and oxygen in the blood. She was just doing so well that they are sure enough that she will continue on. Cassie is being weaned off of her sedation and is starting to have a cute personality. She can be spunky and mellow. It appears that the bottle will be introduced to her tomorrow. If she can get to full feedings she can go home. It will not take as long as it did with Andrew because she already weighs enough to be discharged. So, we are hoping that she will come home a week after Andrew does.
Elena is getting really big. The difference in weight stems from her not having to work as hard since she is on the respirator. She will be tried off on Wednesday and we are hoping she will fly. She got a bath tonight and loved it. She had her eyes wide open and was just looking around. Tomorrow we are going to buy a bouncy chair for her so that she can sit up in bed and get some stimulation. It is so funny that their first two months of life we had to decrease stimulation and now we get to increase it!
Cassie had her first bottle feeding today and ate like a champ. She ate over 1 ounce in less than 10 minutes (that is very good!) If all goes well with her eating we can expect her home in a little over a week.
Elena is still on her respirator and she will have a procedure done by an ENT tomorrow. It is done in the OR so she will get her last feeding at noon and the procedure will be around 5:00. It is like the bronchoscopy, but a little more advanced. It should be very educational and informative and should tell us why she is not making it off of the respirator. We should know the results right after the procedure.
Tonight is our last night as we know it. Starting tomorrow we will not just be the two of us in the home anymore. We have been waiting a long time for this and are very excited.
We roomed-in with Andrew tonight. We were instructed on the use of his oxygen tank and the apnea monitor. He then received his immunizations and actually faired well. He cried with the shot, but was comforted easily. We then went to the room with him, which is down the hall from the NICU. He woke up just to eat and it was so neat to be able to be alone with him, just the three of us. His hearing test came back normal, which makes us very happy.
Cassie was taken off of her aldactazide (blood pressure medication) because it was felt it was not needed. She is doing very well on her nippling (bottle feeding). She gets the bottle once a shift.
Elena had the rigid bronchoscopy done today. It was difficult to see her go to the OR, but they let us come all the way into the holding area. Dad did a good job of comforting her as she was somewhat irritable. The procedure showed that she has some granulation (or scar tissue) that grew around the breathing tube when it was in. It was a Catch-22, because although her vent settings were so low, when she was taken off of the respirator she tired. We now know the reason is because she only had the use of half of her airway because it was being blocked by the granulation. It would be like one of us breathing through a straw. We would tire. The plan was to laser the areas. However, as luck would have it, the laser broke down after just 4 shots and they were not able to proceed. The plan now is to wait a few days and do a controlled extubation and put her on CPAP. The ENT doc feels that the best thing to do would be to get her off of the vent and allow the granulations to shrink.
Cassie is looking a bit swollen since being off of the aldactazide. She gained 200 grams today, or almost 7 ounces. Her blood pressure has also been up. We will wait to see if it passes, if not, she will have to go back on the medication.
Elena self-extubated at 2 a.m. and was put on nasal CPAP. She really hates it, but the orders are to keep her calm because when she cries she irritates her airway even more. The ENT doc said that if she can handle the CPAP for 72 hours it should be enough to reduce the swelling.
Cassie was put back on the aldactazide.
Elena's orders are to have only one nurse 24 hours so that nurse can hold her and comfort her and keep her from crying. They hope it will work.
Cassie lost weight since being put on the aldactazide, which is normal as it is a diuretic. Her feedings are going OK, not as well as before.
Elena is still on CPAP and still has one nurse.
Andrew had his first babysitter today. It was a difficult decision to leave him, but Mom had a baby shower that had been planned for over a month and Dad had to take a final exam. So, Aunt Cathryn and Uncle Dan will win the coveted prize of first babysitters.
Cassie's feedings were not advanced as she is not doing too well on them. She is just not as interested as before. We are very frustrated as Andrew just took off on his feedings, but the nurses tell us that Andrew's advancement was uncommonly good and Cassie is normal.
Elena is still on CPAP. Her CO2's and oxygen numbers look really good. They are dropping everyday. Even her stridor is sounding better. We are very pleased.
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(c) Dane Seeley, 2000