Still no improvement in her feeds. They are going to try thickening formula with rice cereal again because she took her highest volumes on the nectar feeds. They will keep on this for at least three days before making any changes.

They took her off the oral thrush meds since they are not helping.

They also took off her pulse oximeter since she doesn't need it anymore! Yay!

Nothing has changed. Lilah continues to take anywhere from 20-30 ml by mouth (just around an ounce) and them hits a wall. We are not sure if it's the reflux, or air in her tummy, or a capacity thing or what! Her total feed is 65 so she has some work ahead of her. The thrush continues to just hang out there on her tongue.

We are just going to give her a little time.

This morning when Alec and I were visiting, I heard the nurse tell Lilah not to grab at the ng tube in her nose and promptly wrapped her up so her arms were swaddled. We both turned away from her for a few seconds and when I turned back, the end of the tube was in her hand, not her stomach. We are going to have our hands full when she finally gets home! This was the first time I have seen her with nothing extra on her face. When she was born, they did not hold her over the curtain far enough so I could see her before they took her away to get cleaned up and check her out. I took a few pictures quickly.

Today the occupational therapist worked with Lilah and got her to take 43 of her 50 ml feed by mouth before she fell asleep! And even better, she was comfortable while I held her afterward.

The nurse was able to do the same at the next feed. I am sort of cautiously optimistic, while holding my breath. These are definately small steps in the right direction but she has been so unpredictable I feel excited and terrified at the same time while we wait to see what will happen over the next few days.

Alec met his aunt, uncle and cousins on my side of the family today.

Update: Lilah's evening feeds were not so great. Tomorrow is a new day, here's hoping!

This was the first day I have not been able to make it to the hospital. The roads were very dangerous this morning and then Alec had to get his rotavirus vaccine and since it is a live vaccine, we could not bring him to the NICU. We have people lined up so we can visit Lilah and keep him home for the weekend. I miss her horribly!

They stopped her IV because they were having trouble finding veins. The poor girl was poked three times this morning before they gave up. They've switched her thrush treatment to oral meds and started the Zantac and Previcid again.

So far today she bottled 12 ml and then 33 ml, but I just called and she only took 15 for the nurse just now. It's hard to say why. This is a nurse that had not had her before so that could be part of it. She could have been tired from taking so much the previous feed. Who knows!?!

Keep those prayers coming! We need Lilah to be able to take all of her feeds by mouth before she can come home. They will consider sending her home with a g-tube if she doesn't improve and we would really like to avoid that.

Happy weekend!

Today to keep Lilah happy they draped her in warm towels just like at the spa! She certainly has those nurses wrapped around her tiny little finger.

They have decided to very slowly start her back on breast milk. They will feed her by bottle any time she is awake and showing she is hungry. They are keeping her on the IV nutrients to supplement the feeds. We are hoping that as they increase the feeds, her little tummy with be able to handle it and she can come home.

We got a call last night that Lilah had blood in her stool. The immediate concern is something called NEC or Necrotizing Enterocolitis. Here is more about it: http://kidshealth.org/parent/medical/digestive/nec.html

They were fairly certain that the bleeding was from a different drug we were trying to help move the food along in her system and stopped that immediately, but they could not rule out NEC as a cause. They have stopped all feedings and she is on IV nutrients and antibiotics until some cultures come back tomorrow.

So we are back to square one for her feedings. The Dr today said it just might take some time for her to catch on to the whole eating thing. We are sort of waiting for the drugs for the thrush to finish their course and then figure out what to do about her feeds.

We are still waiting for the cultures to grow. Last night the first culture showed a blood infection but this afternoon the doctor thought it could have been a false positive.

The plan is to keep her on the IV for one more day and then come up with a plan for how to start up feeds again assuming the cultures come back negative.

I have to give a lot of credit to the nurses. Apparently the trick to keeping Lilah happy is to play Disney toons continuously. Such sacrifice to keep my baby girl happy! 😃

Alec weighed 8lbs at his appointment today!

The good news is that everything looks normal with Lilah's digestive system and swallow. Unfortunately all it does for us is cross a few things off the list as to why she is having so much trouble with eating.

Early on I had asked if there was anything in my diet that I could cut out to help ease the reflux, I am going to bring it up again the next time I speak with her medical team. I am sort of running out of things to ask. I hope they still have some ideas!

Yesterday they decided to let the IV drugs have a few more days to work on the thrush before doing the swallow/reflux test. They will do the test tomorrow morning instead.

Not much has changed. She is still only taking feeds in the teens and twenties.

I spent an hour this morning holding Lilah as she screamed. It was pretty rough. We are not sure why she was so unhappy but she finally calmed down and took a pacifier. She has not wanted a pacifier for a few days so hopefully that is a sign that the IV drugs are working. She had had two doses over 48 hours so far. Only time will tell.

Tomorrow they are going to take her to radiation and do a test were they feed her and watch the dye to see how her reflux travels in her body.

I am not sure how quickly we will get results, but I will keep you posted.