Tube Weaning - Day 8

Should it still be called tube weaning if we are now just working on oral intake? Yes, it is still dealing with the issues from the tube dependency. Today was another great day for Audra eating wise. Her sister and UofM football are another story. Audra again took more today orally that she ever has. She continues to do great and we should see her weight stabilize here shortly. She is such a champ.

Her older sister is getting in the rest of her two year molars and is not doing well. She is grumpy and has a stuffy nose. To top it off she took a spill outside this morning and bumped her head. She was not in a good mood and has already been awake more times than
Audra tonight.

It was also not a great night for UofM football. Unfortunately my boss was at the game and is a huge Bama fan. It is all good fun. Good to have the boss happy, I guess.

Tube Weaning - Day 7

Today we had a visit from our home care nurse. It was an odd time but it ended up working out. Audra is doing well. All of her stats look good - other than the obvious one. She lost some weight, which we knew. She is still well below 5% weight loss, which is our check point with are cardiologist. When (if?) she gets to 5%, we have to evaluate if we should continue or not. 10% weight loss is the threshold for having to put back in the tube. We are hopeful that we won't get to that point as every day Audra is eating more. She is on track today to have her biggest eating day ever. She also nearly finished her bottle last night for the first time ever. We remain optimistic :)

Get fired up it's (almost) game day! Go Blue!

Tube Weaning - Day 6

Today was another day of progress for Audra!  She had an all time high for both overall oral intake for the day and for one session.  This was the good news.  And now for the bad news.  She still isn't taking as much as we want her to and she had her first weight loss.  It was not significant but hopefully we can turn this around!  We are proud of the progress that she is making and are hoping and praying that she continues along this path.

I have been emailing with some of the moms that did the same program and have heart babies themselves.  One mom is in Ann Arbor and shared her feeding journal.  It is nice to have to compare - although every child is different, we know.  But it helps to see we are right on the same path that they were on and their baby succeeded :)

Tube Weaning - Day 5

Today was Audra's first tube free day! She was in a good mood with her new freedom. Now comes the hard part - eating all on her own. She ate more today orally than she ever has before. That is the bright spot. But this is still not enough. We expect that she will gradually build up over the next week or so. She has her ups and downs and we look forward to making more progress in the small steps that we can.

Last Tube Feed (we hope)

Audra just finished what we hope will be her last tube feed!! She took the most she has ever taken from the bottle today but it is still not enough. Now she just needs to pick up the pace.

All went well with our friends' baby's open heart surgery today. She is already starting sprints to come off the ventilator. Good news!

We hope to have good news of our own with Audra's feeds. When she wakes up next out the tube will come! Finally!

Tube Weaning - Day 4

Today is Day 4 into the tube weaning program and tonight the tube comes out! We are very excited and nervous about this.

We have been receiving great feedback for our net coaching. It is do great to feel like we have a plan and to be trying to do something to get rid of Audra's feeding tube. It seems like we have been living the definition of insanity - doing the same thing and expecting different results. So it is good to be taking steps to move forward.

Overall, Audra is doing well. She still gets frustrated and seems to wait for her belly to magically fill itself. But then she will go and have a good session. She still has a long ways to go but I do feel like we are making small steps in the right direction.

The blood draw yesterday went well and the results were good. Next up is the appointment at UofM to determine if we need to continue on the blood thinner for another 3 months or not. Hopefully NOT!

Also, thoughts and prayers are appreciated today as friends of ours have a little one going in for open heart surgery at UofM.

Tube Weaning - Day 3

Day 2 was another good day with Audra eating more orally than on day 1 and the most she has ever taken! At her 9 pm feed, you can tell she is worn out from the day and falls asleep shortly into her tube feed. She is only getting tune feeds at 9 pm and 3 am. Tonight we are skipping the 3 am feed. And then the 9 pm feed will go and the tube will come out.

This morning she is hungry but isn't interested in eating. Hopefully this improves quickly.

We have another blood draw this morning too. Hopefully this will be her last one for this clot! We have an appointment at UofM on September 10 to look to see if her clot is dissolved. Depending on how everything looks determines if we get to stop her blood thinner and the accompanying blood draws or have to continue them both for 3 more months.