Thanksgiving Update

(We have tried to upload pictures but it is not working. We will try again later 1608, 1617)

Emily now weighs 2450 grams. (5 pounds, 6 ounces I think).

We got some bad news yesterday and Emily has had a setback. She was desatting constantly yesterday and quite frequently last night, so the doctors increased her oxygen to 100% and the flow on her cannula to 2.5 L.

We were also told that Emily has a grade 1 IVH (intra-ventricular hemorrhage). She also has some calcification in her brain. They are trying to collect a urine sample to test if she has a virus called CMV which could cause this. There is no treatment. We are still trying to talk to a doctor to get an explanation as to how she could get a brain hemorrhage this late since 1) all of her previous ultrasounds have been fine, and 2) she was supposed to be past the danger zone. Fortunately, the doctors don’t consider this to be a problem. In fact, they consider it to be so insignificant that on Wednesday when the doctor gave us her ultrasound results, she didn’t see fit to mention it. In fact, the doctor on Thanksgiving didn’t mention it either; a nurse practicioner did.

The other night Emily took her entire 2 oz. From the bottle in only 15 minutes! Meanwhile, the speech therapist is still insisting that Emily shouldn’t be allowed to feed from the bottle at all. Fortunately, the doctor has told us that they aren’t going to stop feeding Emily from the bottle just because the therapist says so. We think that part of the problem is that Emily doesn’t know her and she didn’t take the time to get to be familiar with our little girl before shoving her finger in her mouth at their first meeting. The physical therapist and occupational therapist told us how important this was and they each spent two weeks getting Emily to be comfortable with them before they started the real sessions. No wonder Emily was breathing fast. We’ve seen her with the OT before she got comfortable with her. She would desat and her heart rate and respiratory rate would increase. The physical therapist said that Emily’s muscles are a little tight, and she is going to start therapy for this.

Something funny that happened yesterday was, Emily decided that the urine collection bag that they had on her, was for poo not pee. She pooed in it 3 times and finally the nurse said she would wait till night shift to see if they could do it. We don’t know the results of this venture.

Emily was desating a lot yesterday. Mommy thinks that it is because she has been off the steroids for a while now and we are starting to get a “real picture” of where her lungs really are. Luckily, they have started her on Flowvent, an inhaled steroid, so we should see an improvement soon (it could take a week as opposed to the oral/IV steroids that take a couple days). Emily can go home on Flowvent as well as her Albuteral (sp?) treatments. Yesterday the doctor decided that they would not try to lower her percent oxygen but rather lower her flow rate (thus lowering her O2). The reason for this is Emily is going home on oxygen. The oxygen that she will go home with will be at 100% and they will reduce the flow rate. Therefore this is the protocol that she will be on when she goes home.

On Wednesday they decided to order some more tests on Emily. This happened after they talked to the pulmanogist that will be following Emily when she goes home. These will happen next week. They also increased her diarall, to remove extra water weight (that could be in her lungs as well).

The first test they ordered is called a “milk scan”. This test is similar to a HSG (for those who battled IF) only it follows where her milk goes. For those of you that don’t know, they will feed Emily a dye and follow where it goes via x-ray. This is a relatively simple procedure and the results should be immediate. They are checking for acid reflux. The thought is that perhaps Emily has minor reflux that is going into her lungs and therefore making her desat at her feeds. If she does have reflux they will put her on Xanax (sp?) or Reglan. Ironically Mommy was taking Reglan to help boast milk supply.

The second test that she is going to have is a Renal Ultrasound. This is not the result of what the Pulmanologist said. When she was born she had a condition that her urine was going the wrong way. It was a minor issue and it didn’t really need to be followed closely. At the time we found out (she had had 2 US by this point) we were told that they would do a follow up ultrasound close to her going home to make sure it cleared up. There is no reason to believe that it hasn’t cleared up so we think this will be uneventful. On the off chance it hasn’t cleared up she will need surgery that is relatively routine.

Emily might also get a CT scan or an MRI before she goes home based on the results of this last head ultrasound. As it stands right now this is not scheduled though.

I hope everyone had a good Thanksgiving!!

Tony and Jennifer