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Vonda's Parenting a Preemie Journal

Entry #2 - April 4, 2002
~ NICU Follow-up

Adriana had her NICU follow-up appointment last week. These appointments are to check her developmental progress and to make sure she is on track with her due date age. This is the first one she has had, but we were told she should have had one at three months of age according to her due date. Somehow, her paperwork was lost from the time she left the NICU until now. We would not have known that she was to have these follow-ups if her pediatrician had not mentioned it at her six months' appointment.

The visit did not go as well as I had hoped. The night before, she decided to stay up very late. I told everyone the next day that she was cramming for her tests. We had to drive an hour and a half to get to the center where the follow-up would be. They only do these appointments in the mornings, and that is Adriana's sleeping time. She usually gets very hot in her car seat because of the type of material that is in it, so she was sweating by the time we arrived at the center. The center was in a large building and many children and adults were running around. Keep in mind, Adriana and I have been on house arrest since she came home from the hospital because of all the viruses and bacteria floating around. We have kept her inside except for doctors' appointments and to visit her grandparents. To say she was intrigued by all the activity would be an understatement. She sat in my lap while we waited to be called back and watched everyone and everything in sight.

When we were called back, we were taken to a room that looked very similar to a doctors' examination room. A nurse checked her weight, height and head circumference. She said she was in the 25th percentile for weight and height and in the 60th percentile for head circumference. They used her due date age to compare the measurements. This was the first time we had heard anything about her percentiles. Her doctor does not mention them, and I always forget to ask. I think her doctor does this because she knows Adriana is a preemie. I am glad she hasn't mentioned them, because knowing us, we would probably obsess over them. Her head does sound big, but we have been told that is because of her prematurity. I guess we should have known when we heard that in the NICU that we would be hearing it for a while.

Now, back to the follow-up. The nurse told us to leave her clothes off and the physical therapist would be in to see us. We went with the therapist into another room with our naked, except for diaper, baby. I have been told babies usually like being unclothed, but not our baby. Bruce tried leaving her unclothed one time while we were trying to get a diaper rash to heal and he told me all she did was wiggle the whole time. Premature babies can take up to two years to catch up to their actual age. The physical therapist said Adriana should be 5 months and 21 days according to their figures. We thought she was 6 months exactly, but she told us they have some special formula they use. After that, I became very confused. When dealing with preemies, terms like "adjusted age" and "corrected age" are used a lot. I have noticed no one seems to use the terms the same way. I have been told that adjusted age means the age from the time of her due date and corrected means from her actual birth date, and the reverse. The center where we took her told us something totally different. One of the ladies said that both adjusted age and corrected age mean her age from her due date and that chronological age is from her birth date. Since this center is connected to one of the best NICUs in the Southeast, I assume they know what they are talking about, but I choose not to use the terms now.

The physical therapist starting working with her and almost immediately, Adriana started crying and did not want to cooperate. I think the environment had a great influence on her. Anytime she has been in a room like that, she has been stuck to get either a vaccination or blood drawn. I can't blame her for being fussy, I would have been, too. Once, the therapist and Bruce left the room to warm her bottle. While they were gone, she happily rolled on the floor and played with her feet. The therapist did catch a peek at her while she was in the midst of that activity. The therapist tried placing her on her tummy. Adriana, like many babies, is not very thrilled with that. We have been working with her and she is tolerating it more, but she still doesn't like to be on it very long. And, like Bruce told her, when Adriana cries, it is difficult for us to watch because of all she has been through in life. The therapist also checked her head lag, and Adriana acted like she did not have any strength in her neck muscles.

I wish her Early Intervention Specialist who comes to our house every week could have been with us so she could give them a more accurate picture. I also think Adriana would have been more relaxed with her. The therapist did ask for us to come back in six to eight weeks to finish her evaluation. She also said she would try to get us an appointment in the afternoon if we thought she would do better. She also gave us some exercises to try with Adriana to improve her strength.

At this point, I was feeling a little down about her progress. The therapist said she was ahead on her language development but behind on her gross motor skills, like being able to hold her head up. I felt like I had not been doing my part in helping Adriana to develop. I also felt that if she had a follow-up earlier, we could have caught some of the delays earlier. Bruce always tries to stay positive at times like this. I think we reverse our thinking when we are dealt with physical or developmental problems. Whenever she is sick, I think he is more worried than I am, and when she has a developmental problem, I think I get more worried.

Another person came in and talked to us about the various programs that are available to Adriana. I started feeling a little better at this point, because all the programs she mentioned we have checked out. She tried a couple of things with Adriana and she cooperated this time because she was in her Daddy's lap.

While we were headed back home, we made a vow to spend even more time with Adriana and work on the exercises. Now, she is placed on her stomach several times a day, along with trying to sit her up. I jokingly said to Bruce I wonder if she is thinking she has done something wrong because we are doing this so much.

I pray that she will not have any long-term problems from her premature birth, but I know that if she does, we can get through them with God's grace. Just having her here has been a blessing.

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