Macy

Macy

Friday, November 15, 2013

Am I being punked...seriously!

One step forward; and twenty steps back?  First off Emmet and Reece are both doing great in NICU in terms of being premature. They are slowly learning to eat by mouth, and are slowly gaining weight. It shouldn't be too much longer before they can come home, and I can't wait!!!

The bad news. About a week ago we received a phone call from the NICU Dr. Emmet's newborn screening came back 'abnormal' for cystic fibrosis. Before I go any further let me explain a little bit about how it's screened for first. What they test for first is what is called an IRT level. It's basically an enzyme that is secreted by the pancreas. If your child's level is above a certain number it's flagged and they go ahead and do DNA testing for the CF mutations. Emmet's came back high enough to be flagged, and when they tested his DNA they found 1 copy of the Delta F508 mutation. It's the most common CF mutation. There are about 1800 or so mutations that can cause CF, and they only test for the Delta F508 and about 20-30 of the next most common. Even though Reece's IRT came back in the normal range they did a DNA test on him as well bc of Emmet; and they found the same Delta F508 mutation in Reece. Cystic Fibrosis is a genetic disorder that is inherited by both parents carrying the mutated gene (just like Macy's FA). So right now we know at the least Emmet and Reece are both CF carriers, and it is possible that one or both could have the disease. They will need to be tested via sweat test, but since they are premature they cannot be tested for 2 more months. All we can do for now is try to stay positive that they are both just carriers. 

Any prayers or positive vibes would be greatly appreciated. 

Take care
Jenn

Thursday, November 7, 2013

Just call me Scarecrow...literally! (Not for the faint)

So this week has been a doozy...in a way.  I've been slow at updating because we wanted to wait for some test results to come back first, instead of just freaking out. So I'll start at the beginning. 

Some may not know this, but whenever you have multiples the placentas are sent out for testing instead of just being tossed out at birth.  About two days after the boys were born they told us the pathology report came back showing ESBL infection in both of the placentas.  In the placental tissue to be exact.  it's E. Coli, but it's not just one of the run of the mill E. Coli strands, it's a "superbug" which means it is extremely resistant to antibiotics. So they drew the boy's blood to send out to culture which takes 48-72 hours and started them on antibiotics. They were moved into isolation, and I was put in isolation as well. So my nurses had to "gown up" every time they came in my room after that. At first I was a little confused as to why I was in isolation, because I didn't have any signs of infection. The Dr came in the next day and said it was just a precaution bc they didn't know yet if the infection was limited to the placental tissue, or if it was in the blood. 

So we immediately contacted Minnesota and told them what was going on. If it was in the blood that means it's also in the cord blood which may deem it unusable.  Ahhhhhh!!!!

48 hours later the blood cultures came back negative. whew!  We were relieved.  So they discontinued the antibiotics. Still waiting on pathology report from the cord blood though. 

About 3 days later Emmet started having quite a few Brady's episodes (common in premature babies where they forget to breathe (apnea) so their heart rate goes too low). This prompted a CBC. Both Emmet and Reece had CBC's that were alarming and pointed strongly towards infection. So here we go again....they started antibiotics again, and sent out the blood to be cultured again. They said it is possible they had a delayed onset of that ESBL superbug. However they showed no clinical signs of infection (fever, etc) which was a good thing. We contacted Minnesota again to let them know and were still waiting on their results of the cord blood (they have to test for a bunch of things including confirmation they are HLA matched to Macy and this takes a little while). 

48 hours later was yesterday. In the meantime I was 6 days out from my c-section yesterday and was still in A LOT of pain. A part of my incision started oozing yellow. I knew that wasn't normal so i went for an incision check. 

The plan was my mom was going to drive me to my appt (in the same building as the hospital). We would get that done and visit the babies and find out the results of their blood cultures. WRONG! When I laid down at my appt and the dr looked at my c-section site she agreed it didn't look like it should. They had to peel all the steristrips off, and drain the fluid. Then they started opening me up (taking out the stitches and sticking q-tips down into my gut. Anywho, basically I had many pools of infected fluid all over and they said they'd have to open me back up completely. As in all the way across.......and they started doing it right there in the office until I put it to a stop. I couldn't take the pain and told them I needed something if they were going to do that. Meanwhile.....I think my mom was about to pass out...I was a bloody/gooey mess. They decided to admit me in through ER and give me numbing/pain meds before opening the rest up (thank goodness). And lucky for my mom Adam arrived in the nick of time bc learning what was coming next wouldn't have worked out well for her.  

In the midst of it all Adam said the Dr called and the blood cultures came back negative!!!  YES!!!!  They did CBC's again and they looked good! YES!  Must have just been a weird CBC the first time which can be common with premies.  We are still waiting on the results of the cord blood tests. 

So when I say "just call me scarecrow" I mean it literally. I'm stuffed now.....literally. In triage they gave me meds for the pain and numbed my stomach with lidocaine. They took out all of my stitches and opened me up. Took a syringe and doused the whole area with a saline and peroxide mix............and now for the fun part...took these long q-tips to stuff huge pieces of gauze inside my stomach. INSIDE MY BODY......not just down in the incision site, but actually stuffed down inside my abdominal cavity. They leave the gauze in my body, tape an abdominal pad over the area, and that's it. That all that holding me in. So my c-section incision is not being held together anymore. It's an inch or two opening just sitting there, and they said over time the two sides will find each other, and start to heal. So now everyday (morning and night) Adam has to take the pad off my stomach, reach inside my stomach and pull out all the gauze, re-clean it out with saline/peroxide, and use the long q-tips to re-stuff me full of gauze for the day/night. 

The good news is the boys don't have an infection, and they are really doing pretty great!!!!  I can't wait until they come home!

Take care
Jenn