Janessa has had an amazing week. Her line site looks great, she is free of fevers, urine looks wonderful, she is just doing so good! We had a new nurse today come in and do the lab draws, she did a pretty good job, and Janessa really enjoyed her. The nurse was so impressed with Janessa's progress and was complimenting on how good she is doing!
So we finally got occupational therapy set up! Janessa will be focusing on eating so when she gets her transplant she will be able to! She loves to eat anyways, but they just want to make sure she will continue to do so since she only gets a small amount of formula. Janessa has been having a little bit of physical strength troubles lately. She is very tiny only 12 pounds, and doesn't have the muscles to pull herself up yet in a sit up position. We are going to have some physical therapists come in and work with her on that so she reaches her milestones promptly or at least attempt to.
Not much else has been going on. I still haven't recieved the MRI results yet, they just don't want to call me back =/ ! I also have a concern with her antibiotic and why they haven't increased it yet. I have a bunch of calls to make on that one! Lets hope someone calls me back.
Other than that, I'm going to enjoy my healthy and happy Janessa just how she is!
Monday, October 25, 2010
Thursday, October 21, 2010
October 21st:: Anger & Scrap Books
So Janessa two days ago had a HORRIBLE day. She screamed, she cried, she went crazy all day all night and for the life of me I could not figure out why. Nothing consoled her at all, she was just miserable. I couldn't imagine what it was, she had nothing in her tummy because I drained it, her line site looked good, and there wasn't a hint of a fever(as usual). She was just not having a good day.
At 7 the next morning she started screaming again, and I though "Oh no what am I going to do all day with her screaming like this?" luckily Caleb took her for a car ride and she slept until about 11 and was amazingly fine the rest of the day, and she is doing great today as well. It was such a mystery on why she was crying so much that night. It's hard to help a special need baby who doesn't eat or even urinate for that matter. Sometimes she just might be miserable, and now I need to realize that.
So on a more positive note, I printed a bunch of Janessa pictures from birth and up yesterday. They are beautiful, so now I plan on making my scrap book, but I need supplies! Pink paper, little odds and ends, glue gun, etc to make it look amazing! I have the book itself I just need the supplies. So hopefully today or tomorrow I'll get some, and can start it with the whole pregnancy theme, and so forth.
Lets all hope Janessa remains well and has no more all day crying fits.<3
Marybeth
At 7 the next morning she started screaming again, and I though "Oh no what am I going to do all day with her screaming like this?" luckily Caleb took her for a car ride and she slept until about 11 and was amazingly fine the rest of the day, and she is doing great today as well. It was such a mystery on why she was crying so much that night. It's hard to help a special need baby who doesn't eat or even urinate for that matter. Sometimes she just might be miserable, and now I need to realize that.
So on a more positive note, I printed a bunch of Janessa pictures from birth and up yesterday. They are beautiful, so now I plan on making my scrap book, but I need supplies! Pink paper, little odds and ends, glue gun, etc to make it look amazing! I have the book itself I just need the supplies. So hopefully today or tomorrow I'll get some, and can start it with the whole pregnancy theme, and so forth.
Lets all hope Janessa remains well and has no more all day crying fits.<3
Marybeth
Sunday, October 17, 2010
October 17th: New Discoveries
So Janessa Janee's line looks pretty good. There doesn't seem to be any sign of infection anymore, since she doesn't have a fever what so ever! Her loop once again started to come out today. There are two grip locks on and stat lock and it still manages to come out! When this happens I put the tubing across her tummy, it makes it more secure until the next week when I can do a dressing change and correct the loop. This is going to be rough especially when she starts crawling around, and it'll only be a matter of time, since Janessa is almost six months old!! Seems like yesterday I first found out I was pregnant with her, time sure does fly. It makes me sad to see my daughter starting to grow up and get big, but its also a joy knowing that she is a fighter and will continue to fight this battle of MMIHS which she is doing so well with! She is napping right now, so it's a perfect time to blog about her, good thing I did all the cleaning this morning!!
Anyways, as yins know winter is coming up, and with winter here in Pennsylvania it means extreme cold and miserable days. Well I have a problem keeping her warm with a central line, and keeping it protected from her pulling it. So I know another mom has bought these for her TPN baby, and I so want to get them for Janessa to keep her warm in the winter!!
So here is a link to them The Little Leg Warmers!! They would be so cute with her, and I could put a hoodie on and a onesie without any line troubles!!!
Also 77kids has a infant section for infants 0 - 18 months and the clothes are so adorable, they are made by American Eagle. I think I found my clothing wear to tell santa for Christmas!!
American Eagle Baby Hoodies <--- They have such adorable clothes!!
I am honestly happy to say despite Janessa's condition and abnormalities in her life at least she is staying healthy and we are not always hospital bound!!
Well I'll keep this updated if anything new happens, hopefully we'll get our MRI results, I think I'm going to call tomorrow and find out how they went.
xoxo Marybeth.
Anyways, as yins know winter is coming up, and with winter here in Pennsylvania it means extreme cold and miserable days. Well I have a problem keeping her warm with a central line, and keeping it protected from her pulling it. So I know another mom has bought these for her TPN baby, and I so want to get them for Janessa to keep her warm in the winter!!
So here is a link to them The Little Leg Warmers!! They would be so cute with her, and I could put a hoodie on and a onesie without any line troubles!!!
Also 77kids has a infant section for infants 0 - 18 months and the clothes are so adorable, they are made by American Eagle. I think I found my clothing wear to tell santa for Christmas!!
American Eagle Baby Hoodies <--- They have such adorable clothes!!
I am honestly happy to say despite Janessa's condition and abnormalities in her life at least she is staying healthy and we are not always hospital bound!!
Well I'll keep this updated if anything new happens, hopefully we'll get our MRI results, I think I'm going to call tomorrow and find out how they went.
xoxo Marybeth.
Thursday, October 14, 2010
October 14th 2010: Unsure of this
Janessa had an ICARE appointment(Intestinal care). It went extremely well today. Dr. Squires came in and I haven't talked to him since Janessa was only a few days old. He seems to be happy with Janessa's progress, but still Janessa is not gaining much weight, she is just so tiny. They kept her feeds and TPN time the same so hopefully eventually we'll get her down more!! Her omegaven increased and everyone was just so happy with how she looked today, it was amazing. So we are good in that department until next month, now I'm just waiting for the MRI results to come back.
Janessa's line has been looking a little funny to me. It has been draining for the last few weeks now, but for two weeks it always drains a bit(a yellow brown color), but it's continuing to do so today, and its a bit pink around the site, it looks irritated rather than infected, but I'm not sure. So we called the GI doctor on call to see what they thought(if we should bring her in or not). They said it would be fine until they talk to the team tomorrow because she has NO FEVER, and isn't any fussier than usual. I just don't know what to think. She is on antibiotics for UTI's but I don't know if the antibiotic would contribute to any of this, at least it should help a little unless if she does have a line infection it's resistant to it(but then she would have a fever for sure). I guess we'll just see tomorrow and keep a watch on her temperature.(We do it rectally when she may have something wrong like an UTI or possible line infection which she has had neither in 6 months). I guess I'll wait until tomorrow unless she spikes a temp(it's at 97.9 now).
I'll keep this updated.
Marybeth.
Janessa's line has been looking a little funny to me. It has been draining for the last few weeks now, but for two weeks it always drains a bit(a yellow brown color), but it's continuing to do so today, and its a bit pink around the site, it looks irritated rather than infected, but I'm not sure. So we called the GI doctor on call to see what they thought(if we should bring her in or not). They said it would be fine until they talk to the team tomorrow because she has NO FEVER, and isn't any fussier than usual. I just don't know what to think. She is on antibiotics for UTI's but I don't know if the antibiotic would contribute to any of this, at least it should help a little unless if she does have a line infection it's resistant to it(but then she would have a fever for sure). I guess we'll just see tomorrow and keep a watch on her temperature.(We do it rectally when she may have something wrong like an UTI or possible line infection which she has had neither in 6 months). I guess I'll wait until tomorrow unless she spikes a temp(it's at 97.9 now).
I'll keep this updated.
Marybeth.
Tuesday, October 12, 2010
October 12th 2010: MRI
Well Janessa's line won't keep a loop in it. There is something up with this new line!! I have two griplocks on and a stat lock and the loop still wants to move, its just all a pain trying to keep a baby from pulling their central line out.
Anyways, Janessa had an MRI last Friday. Urology set it up to see if that is why her bladder won't contract. They are worried she may have a tethered cord which may affect her walking on day. Luckily for us they can treat it with surgery and her walking ability will be fine!! Phwwww!! Janessa looked horrible after the event. They put her under general anesthesia for the procedure and was she groggy afterward, and tired. She does pretty well with the anesthesia which is always a good thing!!
So Thursday Janessa has an ICARE appointment. I have a series of questions to ask them. Concerning transplant, her g tube output, and TPN related questions. But anyways hopefully all is well. Janessa is doing great, and we are happy in our nice new home!!
Anyways, Janessa had an MRI last Friday. Urology set it up to see if that is why her bladder won't contract. They are worried she may have a tethered cord which may affect her walking on day. Luckily for us they can treat it with surgery and her walking ability will be fine!! Phwwww!! Janessa looked horrible after the event. They put her under general anesthesia for the procedure and was she groggy afterward, and tired. She does pretty well with the anesthesia which is always a good thing!!
So Thursday Janessa has an ICARE appointment. I have a series of questions to ask them. Concerning transplant, her g tube output, and TPN related questions. But anyways hopefully all is well. Janessa is doing great, and we are happy in our nice new home!!
Tuesday, October 5, 2010
October 5th 2010: So recently at five months old.
Janessa has been doing pretty well! We went all the way through August, and September without any admissions to Children's! Her line sight looked great, she stayed infection free, and grew like she normally should.
During the two months though Janessa had five line breaks, all were fixed until the fifth one, it was the last of her line left and they had to replace it. So Janessa was put as an add on and got her new line. Now the line is in place and functioning fine. We are having problems with the loops though, they don't seem to want to stay in, and with a moving baby it's the hardest thing in the world to keep a line in. One inch of movement and it doesn't work, so you got to keep it secured.
Our recent problem now is that Janessa's tummy keeps filling up with stomach fluid causing her to throw up if we don't drain it out in time. As you know nothing moves in Janessa's stomach, so it causes anything that goes into her stomach to just sit there and not go through the intestine which it should. If it fills up too much then she throws up. We have to drain her stomach for a half hour after every four hours, and even sooner if her stomach is distended and she is irritated. So now we're working on why is this happening all of a sudden and what should we do?
I've noticed that Janessa's bile doesn't relate to the formula feeds, there is a large amount either way with or without formula put in.
Janessa's liver numbers have also went down with the new lipids she is on "Omegaven" and it works wonders! Janessa's bilirubin was at a 15.8 which was very high for only being on TPN for a month and a half(that was from the soy bean lipids they were using). Now her bilirubin as at a 1.29, and her liver is functioning so much better!! We are so happy about this, this saves her poor little liver from any damaged caused by the old lipids she received IV
My plan is to keep this more updated for now on, to be more specific with Janessa details.
xoxoxoxoxoxo Marybeth,
During the two months though Janessa had five line breaks, all were fixed until the fifth one, it was the last of her line left and they had to replace it. So Janessa was put as an add on and got her new line. Now the line is in place and functioning fine. We are having problems with the loops though, they don't seem to want to stay in, and with a moving baby it's the hardest thing in the world to keep a line in. One inch of movement and it doesn't work, so you got to keep it secured.
Our recent problem now is that Janessa's tummy keeps filling up with stomach fluid causing her to throw up if we don't drain it out in time. As you know nothing moves in Janessa's stomach, so it causes anything that goes into her stomach to just sit there and not go through the intestine which it should. If it fills up too much then she throws up. We have to drain her stomach for a half hour after every four hours, and even sooner if her stomach is distended and she is irritated. So now we're working on why is this happening all of a sudden and what should we do?
I've noticed that Janessa's bile doesn't relate to the formula feeds, there is a large amount either way with or without formula put in.
Janessa's liver numbers have also went down with the new lipids she is on "Omegaven" and it works wonders! Janessa's bilirubin was at a 15.8 which was very high for only being on TPN for a month and a half(that was from the soy bean lipids they were using). Now her bilirubin as at a 1.29, and her liver is functioning so much better!! We are so happy about this, this saves her poor little liver from any damaged caused by the old lipids she received IV
My plan is to keep this more updated for now on, to be more specific with Janessa details.
xoxoxoxoxoxo Marybeth,
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