Tomorrow the girls (and maybe Drew) will have an ultrasound done on their heads. On Wednesday (?) they each had one. Drew's was completely normal, but there was some concern with the girls. There is the possibility that they may have a few small cysts on their heads. A second ultrasound a few days later made it seem less likely. There is, however, still a possibility. They will do another one tomorrow morning, so we should have more news soon. Sometimes it takes more than one day for the results to be evaluated and passed on to us, but hopefully we can tell you more tomorrow. If there are any cysts, there is nothing they can do about them. The areas that may be cysts are very small and may not affect the girls in any way, even if they exist. Babies' brains are quite resilient and could compensate for any dead/damaged tissue. We just have to wait and see. We are not overly concerned about it, but we definitely want more info.
Another concern is with weight. The girls seem to be doing better than Andrew. Both of the girls weigh more than they did at birth, but Andrew has lost a few ounces. This is not uncommon for newborns. Hopefully they will all start really fattening up.
They are all doing so well. It seems we get mainly good news. For example, they took Cassandra off the dopamine (blood pressure medication) today at 1:00. Now all three are done with that stuff. They have all been more active and are responding more to our voices and touch, which is a lot of fun. The NICU doesn't want them to get too active, however, and sometimes sedates them so they won't spend too much energy on wiggling--they need it to grow. Andrew has been a lot of fun the last two days. We've been working on teaching him how to suck. He now sucks on an adult finger (usually Mom's or Dad's) quite effectively, which is great for an infant of his size. Normally the sucking reflex isn't as good as his until about 30 weeks, so he's more than a week early. He is definitely the most responsive of the three, with his sucking and eye-opening. We love each of them very much. Look for the new pictures that I just added.
They will probably start trying some feedings with them this week. They should have plenty of milk to use thanks to Mama's abundant supply. They are going to increase Andrew's calories to try and curb his weight loss. Eva (a nurse practitioner) says that weight loss is pretty normal, but it is still undesired. Hopefully he'll start putting it on soon. Poor little Cassie had an IV taken out of her navel today. She tried to cry (they can't because of the tube in their throats). It was pretty sad. The tape was kind of stuck to her skin which made it hurt, despite the best efforts of Lisa (a nurse) to make it as painless as possible. Cassie opened her eyes a few times and gave us all crusties to show her displeasure.
The Daily Universe (BYU newspaper) called today. Dane gave them the whole story while Lorena listened and helped him remember the details. The article should come out either Tuesday or Wednesday. We are excited to see it.
The kids are so smart. We love them so much--more and more every day. We also miss them a lot when we are not with them. This has made it hard for Dad to work and go to school, but he is going to try to get back to his regular schedule this week.
The NICU is great. The staff is very helpful and always willing to answer our seemingly endless questions. Only 6 people are allowed to visit because of the chance for infection (its RSV season). That means that the parents and grandparents are the only ones who will be able to see the kids while they are in the hospital. Visiting hours are nearly limitless. We are allowed to visit anytime except during shift changes (5:30-7:00 AM and 5:30-7:00 PM). We can call anytime for an update. For example, Dane commented last night that he wondered how the kids were doing. Lorena then said she would be unable to sleep unless he called to make sure everything was okay. So, Dane called at 2 AM and talked to Susan, a very sweet, patient nurse who was looking after the girls during the night shift. Of course everything was okay. Susan commented that the kids were all sleeping and that their parents should follow their example.
We got some of the results back from Cassandra and Elena's head ultrasounds. It looks like everything is okay--what they thought might be cysts are probably just developing parts of the brain. This is certainly a relief.
In other good news...Cassie had her first bowel movement right after she was held. That is a good sign because it indicates good bowel development and she may be able to start feedings sooner.
Lorena went back and spent the morning with the babies. We found out some more information. All of the babies are being put in isolettes (incubators). This is a step up from their open heated beds. The isolettes will allow them to remain calm as the noise is really filtered out. Cassie was the first to be put in and then Elena. By the time we left last night they still hadn't put Drew in, but they were going to.
Lorena did get to hold Elena last night. When they put her back in her bed she was very angry. She really liked being so close to Mom. Dane was supposed to hold Andrew, but because of his weight problems we were asked to wait.
Speaking of Drew, he has lost 18% of his birth weight. The girls have been putting on weight like champs. Cassie is now the biggest of the three. Eva (nurse practitioner) has increased the calories in his nutritional IV and we are hoping that helps. They are also trying to make him exert the least amount of energy so that he can retain those calories. Drew is still on his heart medication.
Cassie and Elena's head ultrasounds came back. Elena still has that questionable area, but they think it is just structural. Cassie has a Grade I hemorrhage (very common for babies born under 1,000 grams). Thankfully, it is not in the ventricles so they expect it to go away on its own. They will continue to watch it and she will have another ultrasound in a week.
Cassie and Elena began 1 cc breast milk feedings. Elena took it very well. However, Cassie did emit some bile after the first feeding and some more after the second. Eva is not too concerned as she did have a bowel movement. However, we may have to hold off on her feedings for awhile. They are not going to try and feed Andrew until his weight increases.
All of the babies' chest x-rays looked really good today so they were going to try and get them off of the respirators. Cassie was doing the best so she was the first to go off. We called at midnight and Ron (respiratory therapist) told us she was doing great. They will give her a nasal tube to give her oxygen and pressure to help the transition. They were planning on extubating Elena too, but they are probably going to wait until tomorrow now. They are not going to take Andrew off until he gains some weight as breathing exerts a lot of energy.
We are so proud of our babies. We ask that you keep them all in your prayers.
All of the babies are producing bile. It is a little concerning because it means that the bile that should be in the intestines is making its way to their stomachs and then coming up. However, Andrew and Cassie have had bowel movements and that is an indication that things are working well. Because of the bile all three will not have breast milk feedings for a little longer.
Andrew is off of his dobutamine, his heart medication, and seems to be doing well. He also finally gained 100 grams last night and we are hoping to go in tomorrow and hear that he has gained again. He was put into the isolette and looks very cozy there. He sometimes gets a little too warm and they have to open up his little doors to cool him off.
Cassie is astounding us. Even Ron, the respiratory therapist, said that he is surprised that a 1 kilo baby can breathe on her own like Cassie is. She does have a nasal CPAP which gives oxygen and pressure to her through her nose, but nothing else. She is breathing on her own, no respirators at all! Today Lorena held her. She seemed to be very calm. Her breathing slowed and it seemed like she was in a deep sleep. Because there is nothing down her throat, when she cries we can now hear it. When it was time to go back to her isolette after being held by Mom, she cried. It sounds like a kitten and it breaks your heart.
Elena is the one having the rough day. They tried to wean her off of her respirator late this morning. When we returned home for lunch her nurse called and told us that they had put her back on the respirator after an hour. She could not maintain an adequate CO2 level. They will try again soon. Elena has not had a bowel movement yet and that is concerning. An x-ray taken today showed a possible problem in her intestines. It could be the beginning of a disorder called NEC where the wall of the intestine is actually perforated. If that occurs surgical intervention is required. Hers has not gotten to that point and it may not be nothing, but just to be sure she is on an anti-inflammatory and antibiotics to combat whatever is going on. We should know more on that subject soon. Dane held her tonight and they both really enjoyed it.
Andrew had a fuzzy x-ray this morning so they increased his ventilator settings and sent blood to the lab to check for infection. If he has an infection, they will start antibiotics. He had a bowel movement today so that makes everyone happy. This morning we found out that he gained one ounce and is now at 2 lbs, 3 oz. They sedated Drew after Lorena held him today at 2:00 p.m. and he stayed mellow all day long. We think he just takes after Dad. When we went back at 11:00 p.m. they weighed him and found that he had gained 2 more ounces. So now he is back to his birthweight. We hope he continues to pack on the pounds.
Cassie is doing well today. She hadn't had a bowel movement and it was decided to give her a suppository if she didn't have one by the afternoon. To do this they take a regular size suppository and break it up into slivers. Cassie did not like that procedure at all. She opened her right eye and looked at Lorena the whole time. It was really cute. It appears that she will have big eyes. When they weighed Cassie today she was down to 875 grams (13 grams lower than her birthweight) so they wanted to watch her. We think the bowel movement she had today could have made the difference in the weight. Anyway, they asked us not to hold her and we may only be able to hold her once a day for a short period of time. Because they were worried about Elena and NEC they decided to check Cassie too. They did a blood gas, CBC and blood culture. The blood gas and CBC were normal and they didn't have the culture back but expect it to be normal too.
Elena finally had a bowel movement. YIPPEE!! Her x-rays of her bowel looked good today. She also had a blood gas, CBC and blood culture and hers came back normal too. They will stop the antibiotics since all looks good. She may be given a suppository to help regulate her bowel movements. Dane held her tonight. She is also down on her weight (1008 grams).
Things can change so much from one day to the next. That is why they call the NICU stay a roller coaster. However, we trust the staff and that makes it easier to leave them there. We fall in love with them more and more each day. We still can't believe that they are really our children. It is truly a miracle!
Drew gained 1 oz, but when given 1 cc of water as a feeding he spit up 1 cc of bile. So, they are going to wait a little while before trying to feed him again. Otherwise, he is just a mellow guy. Dad says that he could have held onto him forever because he is such a sweetheart.
Cassie shocked Mommy and Daddy today. When Daddy walked in the nurses told him that she had been switched over to a nasal canula. It is a plastic tubing that has prongs that insert into the nose to deliver oxygen. This is the last step before having no breathing assistance. The prongs in the canula were too big for her little nose so they had to cut them off. That is an indication of how rare it is for a baby this small to be doing so well. Her respirations were a little high on the canula. It is common because she has to work harder than before to breathe, so she will take fast breaths rather than slower ones. If her respirations do not go down they will have to put her back on the CPAP. The nurse said that Cassie has good bowel sounds and should begin feedings soon. When Mommy was holding her today she opened her eyes and was looking around. She tried to look up at Mommy and when she couldn't see well enough she lifted her head, took a look at Mommy and dropped it back down. Mommy was stunned that such a little girl could be strong enough to hold her head up!
Ellie also has good bowel sounds. She had one feeding today but her x-ray later showed some irregularities and her tummy was somewhat distended. So, they will try the feedings again tomorrow.
Grandpa Claudio comes to visit tomorrow so we are excited about that. We are again pleased with the progress of our babies. They bring so much joy into our lives. We are always excited to see them.
Cassie's nurse told us that she is just plain feisty. So, to keep her calm, the nurse put a bigger bundling around her so that she can't kick the other one away. Cassie was also swaddled in a blanket to restrict her movements. She seemed really happy, especially if she was not on her back. She did have a small episode of apnea. It is common in newborns. The brain just forgets to tell the body to breathe. Carolyn, the nurse, could not find a reason for the apnea and she didn't have another one, so they will just watch it. Her blood tests came back looking good. At night after Dane helped give her a bath, he held her and then they put her back into her incubator. Because she is not on the ventilator, they were able to put a shirt on her. Of course, it drowns her, but it is very cute. People keep telling us that she is looking more and more like a redhead each day. It will be interesting. Cassie has lost more weight. She is a few grams below her birthweight. It could be that she is working harder to breathe so she is burning more calories. We will have to watch it.
Elena's x-rays looked a little hazy and when they suctioned out her lungs the mucous was yellow, which is suspect for infection, possibly pneumonia. Carolyn told us that each baby gets pneumonia at least once while in the NICU and this might be Ellie's chance. However, her blood work came back negative so they will watch that too. Ellie was also bundled up to reduce her movement. Ellie is now the biggest. She weighs more than the other two. When Carolyn had to put her back after Dane held her she became really upset and agitated. Her pulse shot up and Carolyn had to calm her down. I guess she likes her Daddy.
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(c) Dane Seeley, 2000