I am also so grateful to have some other wonderful friends to talk to when days are long. I am so grateful.
Jillian currently has an ear infection. She has green goo running from her eyes too. The eye stuff is from the ear infection. She is on antibiotics again. We had to go with a different antibiotic this time because it has been less then 30 days since she was on antibiotics last and you can't be on the same antibiotic twice in 30 days. We know this is a new infection because two different doctors looked at her ears between the two infections and said they were completely fine. We were also told that her tube going in her nose puts her at an increased risk of sinus/ear infections. Hopefully she does not get too many more infections like this.
Jillian is currently on laxatives but it is not making her poop regular. She is still working at times to poop and not pooping regularly, but other times it comes out ok. We are currently working on figuring out the right amount of laxatives.
People have asked us a few things about Jillian and life with Jillian and I just want to make a few statements to answer some questions/comments:
- Jillian needs to be near a children's hospital at all times. We can not put her tube back in and not all hospitals have the facilities to put the tube back in (an interventional radiologist has to put it in). This limits the places we can go and where we can travel. Plus traveling with her is more then just the normal "baby" stuff. It is the normal stuff plus the tube stuff making it feel like we are moving out anytime we stay the night someplace.
- Jillian gets all her food from her tube. She gets NO food though her mouth. She does get water that she still chokes on at times. Giving her food by mouth is not an option because of the choking and vomiting. If Jillian's tube comes out she is not getting nutrition which is why it needs to be replaced quickly. She gets the same amount of milk in a day as a typical baby but she only gets a little over an once every hour. She needs to get the correct amount of milk a day to grow and be hydrated.
- I don't know when the tube is coming out and no I will not guess for you. All I know is it is in there for now. I see the tube as a life saver, and as much as I want Jillian to eat "normally" I am not running today to get the tube out because I would rather her be healthy then have the tube out.
- We are not trying baby food right now and the doctors are not even having that conversation. The APA recommendation for starting baby food is 6 months old and she is not that old anyhow.
- No my child would not be happier with "real" food. She is a baby. She should be getting milk, she just gets it a different way and if you ask me I think she is pretty happy.
- No we are not currently looking into taking Jillian to any other specialists (ie second opinions). She is following a very common course of treatment for her symptoms and I don't think anyone else would have any other opinion and what we are doing now is working. Jillian is growing and developing and that is the goal. I like her doctors and I trust what they are saying.
- Nope, I don't know her exact weight today. We do not weigh her everyday :)
- We don't really leave Jillian. She comes to work with me and while she is in her own classroom I am in the room next door. Brent and I dont really go places without her. First we really like having her around and we feel like we dont get to spend enough time with her as it is so we like to be with her as much as possible. Taking care of her is a job and a job we feel is ours. There are many things that need to be done to take care of her. I joke each night that I am the chemist as I am mixing milk and measuring things. Her pump likes to error at times and there are many different things that need to be done to fix it. Jillian is also on multiple medications that need to be given a specific times of the day in specific ways. So while we are very grateful to the people who have offered to take her but it is a very limited occurrence that us leaving her happens. Also whoever takes care of her has to be currently infant CPR certified and have spent a lot of time with her to know all the "Jillian" things. Call me an overprotective mom, but this is what we feel is best.
- Jillian is currently growing into 3-6 month clothes! I have started packing away her 0-3 month clothes! She has been in them since she was a month old and it will be nice to hopefully have her in all 3-6m clothes by the time she is 6m. No, I don't gauge how she is doing based on clothes size (I try to always remind myself that clothes have arbitrary numbers... I bought a size small pants the other day...)
- Jillian's pump is filled at 6am, 10am, 2pm, off from 6-8pm and refilled at 8pm, 10pm and 2am.
- Yes I have lost weight. I was 196lb before I got pregnant and I an down around 150lb. My secret... having Jillian :)
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