Update

Evie is still doing a great job at home! We have established as much of a routine as possible with having another baby in the NICU. Usually we wake Evie up for her bottle at 8, then she lays in her Rock N Play while Nate and I get ready. We head to the hospital around 10ish and stay until about 7. Evie has a bassinet set up in Sophie's room, and we try to keep her on a schedule similar to Sophie's to make it easier on us when they are both home. When we get back from the hospital, it's time for Evie's 8:00 bottle, followed by a snooze, play time, and then her 11:00 bottle. We rock for a while, read a book, say our prayers, and go to sleep around 11:30-12. She sleeps until 8 with the exception of waking up around 2 and 5 for a bottle. Hopefully Sophie is just as good about maintaining a routine when she comes home!

Evie has an appointment with the pediatric ophthalmologist tomorrow. Because of their prematurity, Evie and Sophie are at risk for something called retinopathy of prematurity (ROP) and will need eye exams every two weeks until about a month after their due date. Sophie will also have an exam tomorrow in the hospital. Their first eye exam was two weeks ago, and it just showed that their retinas were immature (duh!), but no signs of ROP. We are praying that their retinas mature properly so that neither of them will have any vision problems.

Now on to Sophie...

We believe her feeding intolerance is pretty much under control! As of yesterday, she was up to her full feeding volume (42 mL every 3 hours) and had had no issues for over a week! We were thrilled, and we knew that her next (final) goal would be to practice nippling her bottles and nipple for 48 hours straight so she could come home... until this morning, when the plans changed again...

I received a call around 7am from the neonatologist to update me on Sophie's night. Apparently, she began having alarms more frequently and needed to be put back on oxygen. Her abdominal circumference had also grown (they check this frequently as it indicates some kind of bowel malfunction.) She had an xray, which was abnormal. Her WBC count and CRP were elevated, indicating infection. They were questioning whether she had the serious belly infection called NEC that I've referred to in a couple of my other updates, so her feedings were stopped, an IV was placed, and antibiotics were started. (Remember that nasty cycle I talked about with her feeding issues?...) This was EXTREMELY frustrating to Nate and me, as just three days ago, a nurse basically told us that at Sophie's age and weight, she was out of the woods for this type of infection. We rushed to get ready and come to the hospital so we wouldn't miss anything. The doctors had done several tests and did not yet have any conclusive results, although it sounded like they were leaning toward NEC.

This evening, our nurse informed us that Sophie's blood culture had come back positive, and that the description of the bacteria fit with the same bacteria that caused her infection a few weeks ago. We should know tomorrow whether it is the same infection for sure, but for right now, they are treating it as if it is. We spoke with the doctor, who informed us that this infection only happens in 4 out of 10,000 infants, and it recurs in 3% of the infants who have it. Those are both very small percentages! Ever since December 15, the day I found out I was having twins, our world has been full of low percentages. The low percentage of conceiving monochorionic twins naturally, the low percentage of having TTTS, the low percentage of having the laser surgery and developing TAPS... the list goes on and on. We are extremely frustrated, discouraged, and heartbroken for our little Sophie. Because of the result of her blood culture, she has to have another spinal tap tonight and will most likely need another PICC line and to be on antibiotics for another two weeks. We will meet with the infectious disease specialist tomorrow, and she will outline the plan for us, which will depend on the results of the spinal tap.

Back to the NEC... now that we know we're most likely dealing with a recurrent Group B Strep infection, the doctors aren't as concerned about NEC, although it certainly hasn't been completely ruled out.

After an encouraging week in the NICU, today was hard to handle. We are so ready to take Sophie home with us and start our little life as a family of four, and unfortunately, it sounds like it will be at least a few more weeks before that happens.

Please keep little Sophie in your prayers, and of course, pray that Evie stays healthy too!

Love,
Nate, Sara, Evie, and Sophie

PS. I just got a call that they finished with Sophie's spinal tap, and it went well, and she is resting comfortably. I wish I could be there with her, but luckily, she has one of her favorite nurses to take good care of her tonight.