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Vonda's Parenting a Preemie Journal

Entry #8 - October 1, 2002
~ Bye, Bye Pump

AdrianaThis month has flown by. I hate to sound old, but I feel like this month just started, and now it is over. How many days until Christmas?

This month has been busy with more appointments. One day early in the month I turned in my wonderful, trusty breast pump. As much as I am glad that I was able to pump milk for Adriana for so long, I was happy to turn it in. The lactation consultant called me the week before and asked (while laughing) if I was ever going to turn it in. I told her I was in the process of weaning and I was hoping to soon. I turned it in a week later and so far; I have not had any major problems from it. The lactation consultant made me feel good when she told me she thought I deserved the mother of the year award for going so long. When I finished, I had pumped for 14 months straight. Like I said before, I am glad I did it, but I almost feel like I robbed Adriana of much needed activity time. It was a kind of trade off. I know the benefits of my milk were too numerous to measure, but I spent an awful lot of time pumping and washing pump parts. Next time, I will be more aggressive about getting the baby to nurse directly.

Adriana had to go for another NICU follow-up appointment this month. We arrived at the center and they could not find her listed for the appointment. The receptionist told us she was not on the list and was not on the list for any time in the future. Okay, they called me and they set up the appointment, does anyone else see a problem with this? At first I thought I was losing my mind, but then I remembered the lady who called wanted to set the appointment for when we would be out of town, and we decided on a different date. Adriana also had a hematology appointment this month, so I thought maybe I had mixed up the appointments, but I knew I had double-checked the calendar. Before I had a child, I would not speak up very often unless I was very, very irritated. Having a child has made me become more assertive. I politely told the receptionist that we had driven 75 miles for that appointment, and could they at least work us in. They were able to do that and we were able to keep the appointment. While Adriana was being seen, someone stepped into the room and told the nurse another couple had come for an appointment and they were not on the book, either. The director of the clinic and the nurse assured me that I was not losing my mind and this was not the first time this had happened. We had already been trying to decide whether or not to take Adriana back to the NICU follow-up clinic because she is receiving so much help now, so I think this visit sealed that decision. We were delayed the first time we went because her paperwork was lost in a black hole somewhere, and I wonder if she would be more ahead developmentally if she had received the help she needed earlier. I think we are going to pass on the next visit.

AdrianaDuring the visit, she saw the nurse and a psychologist. When the nurse tried to examine her, she screamed her head off. She was not able to get her blood pressure or heart rate. This is another joy of having a preemie. By the time she had left the hospital, she had been stuck almost every day of her seven-week stay. Plus, she has had her round of RSV shots and her regular immunizations, so no wonder she is scared anytime we go anywhere remotely looking like a doctor's office. She did calm down by the time she saw the psychologist, which I was grateful for. She worked with her and used an evaluation tool to assess her development. Once again, she did not do a few things that she can do. She seemed tired, and it was during the morning. The psychologist said she was in the 10-12 months range, which is what she would be by her due date, so we were pleased.

Adriana also had another hematology appointment this month. The way the doctor talked during the first visit after she had left the NICU, this was just a routine visit and she probably would only be seen one more time. Well, that was two visits ago. Each time we have seen a different doctor. She is being checked for anemia and she has some irregular-shaped blood cells. The first visit we were scared to death when the doctor told us about the irregular-shaped blood cells, because we thought he was going to tell us she had some deadly illness. He told us her cells were nothing to be alarmed about, but she may have to have her gall bladder out at an early age. He asked if anyone in our family had gall bladder problems, and Bruce replied his whole family. The doctor checked Bruce's blood and compared the cells to Adriana's. He said he didn't find as many irregular shaped ones in Bruce's as he thought he would, but they were similar. We thought she would be released the last time we went back, but she was given another appointment for this month. The doctor this time was concerned about her iron levels, even though they were within the normal range, and her pediatrician said they were fine the month before. He also told me "they" were not convinced the irregular-shaped blood cells were hereditary. I was by myself and I was starting to panic when I asked him if we need to worry about it, if it was anything life threatening (the office also sees pediatric hematology patients). He said, no it's minor, but we need to keep a watch on it. He wanted to see her back in three months instead of six. Let's back up to what I said earlier in the paragraph about the NICU follow-up clinic. This baby has been stuck all her life and from what I can figure right off, has not had a month when she wasn't getting stuck. So, now they are telling me that she has to be stuck even more just because they want to keep a "watch" on something that is probably hereditary and her iron levels that her pediatrician says are fine? Well, the assertive side of me jumped in again after Bruce and I talked. The next day I had to call to see if we were going to give her iron drops again and I told the receptionist that I wanted to talk to the doctor who saw her while she was in the NICU and we saw when we first went to the office. I wanted him to look at the results of each visit and give us his opinion. I also told the office that we were seriously considering discussing this with her pediatrician and getting a second opinion elsewhere. The doctor called back and talked to Bruce. He said he was sorry we were getting three different stories and he would personally see Adriana the next time she comes in. We definitely want her to get all the help she can get, but we also don't want her to have to go through things unnecessarily.

Adriana seems to be taking off developmentally this month. She pulled herself up to the sitting position by herself one night. Of course, I wasn't around, but Bruce was. He actually didn't see her, but he said she did it. He had put her down on the floor and was reading a newspaper when he heard her laugh. He looked down, and she was sitting all by herself. He said she did it again that night. She has also been standing up supported. She has done that a lot and is increasing her time of staying up. Maybe next month she will be walking! She is starting to eat more table food. I was starting to worry that we would not be able to get her to eat anything, but we have found some things she likes. Adriana is definitely independent and likes feeding herself. One of my mother's friends saw her the other night and she said she has changed a great deal since she saw her at Adriana's birthday party. Her personality is coming out more and she loves playing patty cake with anyone who will take the time.

AdrianaWe attended a reunion this month for the babies that have gone through the NICU where Adriana was. We were not able to go last year because she had just been released from the hospital and it was near the beginning of RSV season. We saw a few babies who were in the hospital when she was. They all seemed to be doing so well. While Adriana was in the NICU, one baby stayed with her almost the entire time. Whenever one of them moved into a new section of the NICU, the other one did. They were released about the same time. This little girl and her parents were there. She was walking around and doing great. I am so glad all of them are doing so well. Bruce said the reunion helped him because he was able to talk to the parents and find out what their babies were and were not doing. Some of them were behind developmentally, and some were ahead. Each seemed to have different things they were good at, and other things they were working on. Sounds like regular full-term babies, huh?

I am learning to bite my tongue when people tell me that we need to be "letting her go" or leaving her with someone from time to time. I have tried to explain to people that for about eight months of her life, she could not be around anyone but a few family members and us. She is getting better about staying with someone else for short periods of time, but she is not ready for us to leave her for a long time. She screams and cries when she cannot see one of us. Believe me, I would like for Bruce and I to be able to go out to eat or to a movie, but she is not ready. I know people mean well when they say that, but they haven't had a preemie, they don't know what it's like. Our families don't live nearby and we don't have close friends here whom she is familiar with. I hope to work her up to our being able to leave her so we can do some Christmas shopping or something like that.

We reached the best milestone this month. Adriana became one year old by her due date (more like three due dates). I was looking forward to this time, because her pediatrician had said that she was at a risk for SIDS up until she was one year old by her due date. (Premature babies' nervous systems are not fully developed when they are born.) We didn't have another party, but I felt like it. We definitely thanked God for helping us to reach this milestone.

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