Wednesday, September 26 - Microarray results (Day 11)

Eric and I went up to the hospital this morning around 10:00.  Julia was sleeping.  :)  We weren't sure if the speech pathologist would be coming up for her 11:00 feeding, but she didn't make it to that one. I nursed her and she took 16 ml which was significantly better than yesterday.  We asked her nurse if any test results were in and learned that  the microarray (i.e. genetics test) results were in.  However, the neonatologist was in a consult and wasn't available to tell us the results.

So we anxiously went down to the cafeteria knowing that when we returned from lunch we would hear the results.  Naturally, we both seemed to be a little more quiet while eating our sandwiches, chips, and cookies.  After lunch we apprehensively went to NICU and found our nurse.  She forwarded the doctors message that everything came back normal.  This was a huge relief, because this eliminates a number of genetic disorders.  This test obviously doesn't eliminate everything, but a big step in the right direction.

Eric went to work and Sara stayed with Julia.  It was bath day for Julia and so Sara gave her a bath.  She has liked her two previous baths, but wasn't so fond today.  Her NG tube needed to be switched from her left nostril to the right nostril, which will happen once a week while she has the tube. Julia was not too pleased with the tape being pulled off. After getting her all cleaned up and dressed, Sara asked the nurse if she could take a few pictures before putting the NG tube back in.  So I think we have our first pictures other than right when she was born where she has nothing attached to her face!

Sara fed her for her 2:00 feeding and Julia ate 17 ml.  Dr. Stratton (a neonatalogist) came and talked a little about the microarray results.  He again said they were all normal.  Sara asked if that meant conclusively that she doesn't have BWS and he said that genetically she does not have it.  He said she may have some of the physical characteristics of it, but none of the genetics for it.  He also said they are going to retest her thyroid levels on Monday to make sure they are not changing.

We are scheduled to meet with the speech pathologist for Julia's 2:00 feeding.  We are hoping to get a few questions answered and start getting more of her feeding issues figured out.  On the feeding note, Eric went up for her 5:00 feeding to give her a bottle and she ate a whopping 3 ml.  Hopefully we will get her eating more soon.  We did ask the nurse a heavy question of how long, in her opinion and experience, Julia would likely be in there.  She said it can vary greatly, but if she would take a guess, she would say probably at least another couple weeks.  She did say that Julia could change overnight and start taking feedings without any problem.  So basically, we have no concrete idea of when Julia will be coming home, but we will keep hoping that it is sooner rather than later.

The boys went to a local children's museum with Coco and Kelli today.  From what they told us about it, it sounds like they had a great time.  Coco said they were the only ones there so the boys had the run of the place.  Tomorrow, Coco and Kelli will be heading out tomorrow and are actually taking Oliver and Parker back to Iowa for the weekend.  Oliver is excited (there is talk about a parade in Amana on Saturday) and Parker growled a bit and ran off, which we take as being excited.  It will be a quiet weekend around our house without the boys here, but will be nice that Eric and I will be able to go and visit Julia as we please and maybe we'll even eat somewhere other than the cafeteria over the weekend.

Julia enjoying a tube free couple of minutes after having her NG tube removed and before her new one was put in.  These are the only pictures of her without tubes since right after she was born.

A big yawn

Now she's content

Julia checking everyone out after her bath

Just relaxing