I took Lucy in to see our pediatrician today because she has been running a fever for several days. Being the mother of four I do not panic when the kids get a fever, because kids do get fevers. But with Lucy I have had to adjust my thinking some. Believe it our not this is the first time that Lucy has been sick with a fever. She has a number of other medical issues but fevers are not one of them. In my mind, I was thinking that it was better to be safe than sorry. I didn't want to end up at DuPont this week because I overlooked something as simple as a fever, so I paid the co-pay to hear these words spoken to me by our pediatrician "it's just viral." That was the best thing she could have said to me today, not that I want my baby to be sick but that a virus is something that all kids get and will go away with time. It was a normal pediatricians appointment, you know the kind when you go in and feel like you just waisted her time and yours with something as simple as a virus. I was happy to have such a "normal" appointment today, not one where I left more worried than when I came. Of course we will continue to monitor her and hope that she recovers from this virus soon! I am also happy to report that Lucy is putting on some ounces! Drew has been plotting her growth much the same way he plots his data at work. He showed me her progress from the last few weeks, and she is definitely gaining, the scale is showing this as well! The ladies in our pediatrician's office noticed that Lucy's eyes were different, less sunken into her face. I noticed this several days after starting the tube feedings, but was happy to see that others can tell as well. It is encouraging to see her growing after all the effort and worry that has been given to her growth! Thanks for all your thoughts and prayers, they are making a difference!
Just thought I'd also update you all and let you know that Drew and I were able to catch a very cold breath of fresh air as we took in the peace and serenity of Longwood gardens. All of the Christmas lights were lit for the occasion. What a beautiful place for a party! We were able to get Lucy to sleep by 7:30 and we left the other kids to be put to bed by their grandparents. We received a call at 10:20 saying that Lucy was awake and crying. We got home by 10:45 and I was able to put her back to sleep with a little nursing and comfort. It was so nice to have those few hours! Hope we can do it again sometime soon.
It's been over two weeks since we were introduced to Lucy's new feeding system , I thought I would give an update on how things are going. The calculations for figuring out how much to put in the IV bag are getting easier now that we have learned what the best rate is for Lucy to receive her feeds. We have learned that the "Joey"pump has a 10% error in its run time, that explains her discomfort and vomiting last week when we were ramping up to the maximum rate. It's never good when you go to pick your baby up and she looks as though she is going to throw up all over you. So sorry Lucy that it took Mommy and Daddy a few days to figure out the system, we now know that anything above 45ml/hr is too much for her! As long as I am on the subject of bodily fluids, we are dealing with the exact opposite issue Lucy had before, diarrhea. For a baby who only went two to three times a month to now three to four times a day it has been a shock, not only to her but to us as well. Lucy is waking in the night with blow out diapers, the kind where you need to wash the baby, all her clothes, and the bedding not just once a night but several times in the night! Oh, I miss sleeping! When I spoke with the nutritionist and her metabolic doctor about this they were hesitant to switch Lucy's formula because they really like to give it several weeks to see if things don't improve. As her parents, we feel that this is related to her formula, as she is having these diapers only when the tube is running and not during the day when she is just nursing. Our pediatrician feels as though Lucy may be having malabsorption issues, perhaps it's the rate at which the food is going into her. What ever the issue, I know that she does better with just breast milk, so I am trying my best to build up my supply so that I can put more in her tube at night. This issue has created quite a backup in our laundry room! I would just like to say how thankful I am for Oxi Clean, that stuff works wonders! We have tried bigger diapers but they only make it worse as she has the skinniest legs and they just leave a gap for more fluids to escape. I have joked with Drew saying that I think we should wrap Lucy in plastic wrap after we diaper her, maybe it would contain the mess. For those of you who are new to my sense of humor, we would never really try this; but think it, I can't help it. As for our night time routine, we are getting better. We have a system down now that appears to be working, although it is constantly up for evaluation. Lucy is still waking in the night out of habit or because of a dirty diaper. I am waking every three to four hours to pump so that I can keep up my milk supply for her feedings. She seems to know when I am doing this because she is waking around the same time. I will nurse her back to sleep or change her if need be, then I go back to sleep for a few hours. We are setting the alarm clock for sometime in the middle of the night so that either Drew or I wake to add the formula to her bag when the breast milk runs out. We can not mix the two milks because breast milk can only stay at room temperature for four hours. Lucy's pump has an alarm bell that sounds when there is a problem with the feeds or the food runs out. The other night while setting the pump, I accidentally set it to go off after receiving so many mls of food. As a result the alarm kept going off every hour! We tried to fix the problem all night but with no success. We learned the next night while setting the pump what I had done wrong the night before. With that fixed, we thought that we would get a better night sleep the next night, wrong. For various reasons the tube kept clogging and the alarm kept sounding. On top of that Drew's pager for work kept going off due to low battery! Tonight we had to place another tube as Lucy pulled it out again. This is all in a night at our house!
