Monthly Archives: September 2014

A Horrible Cold. Originally Posted January 21, 2010

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The pediatricians think that Ali may not be tolerating her feeds because of her cold. She is really mucousy and she may not be feeling very well in general so that may be causing the problem with her feeds. We’re keeping our fingers crossed that they’re right! She seemed to be a little more congested today then before so just to be safe the Pediatrician ordered some microbiology tests to rule out any sort of infection/bacteria. We are waiting on the results of the cultures and probably won’t be making any more changes to her feed until we know what’s going on with her cold. The poor little thing was pretty “pukey” for most of the day and we don’t want to do anything to make her any more uncomfortable.

Tomorrow is the day Jason and I learn to put in Ali`s feeding tube. Jason is totally okay with it but I’m terrified! I wish it hadn’t come to this but I’m willing to do what I have to do to get my baby home. Never in a million years would I have thought that I`d be learning this particular skill in order to take my beautiful girl home.

 

Another Rough One. Originally Posted January 21, 2010

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This morning seems to be the same as yesterday, Allison is not tolerating her feed right now. Her afternoon yesterday seemed to be fine but overnight she started to have trouble with the feed again. Night always seems to be worse for our little peanut…I wonder why?

The nutritionist spoke with us this morning about going back to a continuous feed for Ali to try to get her calorie intake up. This is not really an option for us right now because we are hoping take her home on the feeding tube and with a toddler at home to care for and activities to get too I can’t have a child who literally eats 24 hours a day. In the end we will do what’s best for Ali but going to continuous feeds seems like a huge step in the wrong direction to Jason and I and we would rather just give Ali another day or two to adjust to this feed and then keep on working on compressing the time required for her to take in her required volume.

Ali did gain a tiny bit of weight yesterday! She now exceeds her birth weight!!!!!!!!!

A Rough Morning. Originally Posted January 20, 2010

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Ali had a really rough morning today. Very early this morning she was pretty agitated and vomited a couple of times so the Resident came to see her and to the Resident it looked like Ali was very uncomfortable (she even vomited on the doctor to get her point across!). Once we arrived at the hospital around 8:30am she threw up three more times and then settled down and since then has been doing better. She is still pretty agitated at times but no more vomiting since about 10:00 am. I spoke with the Pediatrician and we have decided that for now Ali has gotten to the point where compressing her feed anymore might do more harm then good so we’re just going to wait it out and reevaluate tomorrow morning. I specified that I don’t want any changes in terms of her feed to happen today because I think she needs to have a little break right now.

She has been doing a fabulous job sucking on her soother for the past couple of days but today she’s not that interested in it…probably because her tummy is upset. I’m sure tomorrow will be a better day in terms of sucking on the soother.

Jason arrived this morning and I think Ali was happy to see her daddy!

Tolerating feeds. Originally Posted January 19, 2010

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Over the past couple of days Ali has been starting to tolerate her feeds more and more. She is working very hard to meet her tube feeding goal of tolerating 75ml of formula in half and hour. She has moved from eating all the time to being able to tolerate her feed in 2 hours and 15 minutes. Today we are working on tolerating it in 2 hours which is a huge step for out little peanut and we are all very excited!

While in the hospital, Ali is getting a very concentrated formula so once she meets her “time goal” we are going to start increasing the actual amount of formula so that she can still get the required amount of nutrients when using normal formula. We are working towards the goal of eventually bringing Ali home as a tube fed baby. To bring her home though she needs to be able to tolerate the same amount of formula that any other baby would in the same amount of time…I’m thinking about 100ml per half hour every three hours!

Jason and I are going to be trained to take care of the feeding tube for Ali, which is pretty scary.  We have to learn to put it in, take it out, feed her, medicate her etc.  I never would have imagined that I would need that particular set of skills to take my baby home.

Cardiology was in yesterday too and there is some concern that they may have found another issue with her heart but because she has a cold they can’t be sure just yet. They are watching her closely and will decide on a treatment option once her cold is gone.

My mom is leaving tommorow morning. I have really appreciated having her here with me.  I’m going to miss her but Jason will be arriving tomorrow for a few days which will be great!

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