Mommy got the tube in! Originally Posted January 23, 2010

We did our NG training today and it was easier then I expected.  It wan not exactly my idea of a good time but still easier then I expected!

Ali is no longer isolated. It’s great that she’s fighting off her cold but also unfortunate that we’ll probably loose the private room. It`s hard to sleep at the best of times in the hospital with all the machines beeping and people bustling around, the private room has been a nice change! Ali`s still very congested but hopefully that goes away soon.

Our little peanut did have a bit of vomiting this morning but we decided to go ahead and attempt to condense her feed to 1 hour 45 minutes anyways because the cold is getting better so there’s a good chance she’ll tolerate the feed. She lost weight yesterday which is unfortunate and probably due to the vomiting.

Jason and I got to go out tonight to an NHL hockey game tonight. It was fun and a great way to unwind after another stressful day.

We spoke with Cardiology. They would like to run some more tests next week. They’re not very concerned about anything but they just need to recheck some results in order to get us closer to being discharged.

A Horrible Cold. Originally Posted January 21, 2010

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

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

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!

A blog about living life one day at a time with an amazing little girl with Costello Syndrome.