Day 160

Wow, it's been three weeks since we wrote anything.

Our Christmas was absolutely awesome.  The amazing staff at our NICU got together and sponsored Christmas for us which meant that many generous people bought gifts for us and all of our kids.  We have a pretty big family, and the fact that they did this for us was no small feat.  It was a great experience for our kids to see how many people care about us.

Wren in the PICU had still been on the oscillator, and as a result we had been unable to hold her for something like 35 days.  We had told our nurses there that we were hoping to bring our entire family into the Wren's room on Christmas day assuming everybody was healthy (no small miracle).  When we got in that day after opening presents at home, Kyndall our nurse and Sabrina (RT) had been planning to surprise us with getting to hold her.  This is a bit of a production since the oscillator uses thick, rigid tubing that has very little wiggle.   After about 20 minutes of prep time, however, it worked!  Shannon got to hold Wren, which seemed like a perfect ending for this great Christmas.

I watched Shannon holding our daughter, and seeing our entire family in the same room for the first time, and it struck me that this had to be the most blessed Christmas we have had together.  

While we were there we sung a Christmas carol while Wren watched her brothers and sisters.

                                     

A few days after Christmas, Wren transitioned to a conventional ventilator.  She seemed really happy and was doing well on it, but after a couple of days, her CO2 suddenly spiked and she had to be sent back to the oscillator again.  Sadly, she tested positive for another bacterial infection, which looked like a repeat of MRSA according to the lab.  She was put on a set of antibiotics once again, and back to the drawing board.  Within a week or so, she seemed to be back to making progress.  However, about a week ago suddenly her CO2 once again spiked, and our fears were again confirmed when she was found to have ANOTHER bacterial infection, a couple of days after her last antibiotic course had run.  This time, it involved, MRSA, Klebsiella, and one other one that I can't remember.  The result was she started feeling sick again and her respiratory needs went back up.

This was the third time she got some kind of infection since at the PICU.  I hope that this rate of infection is not normal, because this poor baby cannot seem to make any progress at the rate things are going.  All of the infections she has gotten have been with bacteria that are commonly present in a hospital setting.  So, if she was at home, she wouldn't be at such risk of these infections, but she can't seem to get home to us, because she keeps getting sick which halts her progress.

As of today, she is again getting back on track.  Her antibiotic course is almost done, she is now receiving full feeds of 70 mL / 3hr via the G-tube, and her TPN is no longer needed.  I talked to the nurses and doctor a couple of days ago about the need to get us holding her and helping take care of her again, and she was doing well enough today to support putting her back on the conventional ventilator once again.  We are hoping it goes well this time, but now I am cautious.

                       

On another note, Avery continues to do really well at home.  She is eating a lot, sleeping very well, and starting to smile once in a while.  It's great!  All she needs now is her twin sister.