and the roller coaster continues...

I would have to write a couple times a day if I were to really keep you updated on the changes that take place in here. Since my last entry, Alyssa became very sick. Just when we thought one day she was getting better, she took a turn for the worse and became extremely sick, Tuesday night, early Wednesday morning...She was septic, meaning infection in her blood, Her oxygen requirements remained at 100% with very high pressure support to keep her lungs open. We received a call Wednesday morning at 4:30 to notify us that she was being put on an oscillator, which is a machine that sends high frequency breaths at less intensity then the ventilator, in hopes to reopen her collapsed right upper and middle lung. I think this was also the time they called up to tell us she has an air leak on her left lung, or maybe that was the morning before. Her entire little body vibrates, so basically she is breathing like a hummingbird as Dr. J says, we love Dr. J :). She has to be on medication to keep her paralyzed while she is on the oscillator, so that her breaths don't interfere with the oscillator and so she doesnt' become to agitated. Her blood pressure was very low, so they had her on 2 other medications to control that. So basically she was on full support of everything to keep her alive, we were very very scared on Wednesday, especially when Dr. J had tears in her eyes talking to us about how sick Alyssa was. How am I suppose to be strong when Alyssa's Doctor is upset? However, Keith and I both kept our strength and prayed, and prayed and prayed some more. If her oxygen saturation were to drop, there wasn't a lot of help they could give her. Dr. J told us she has grown very attached to my little girls and not to give up hope (which we never did, and never will), and although it was very close, she told me she wasn't telling me to "prepare myself" YET. Luckily I am writing all of this in the past...there is no way I would have been writing this update on Wednesday. Within 48 hours or so, Alyssa started to fight back, and her oxygen requirements decreased, her blood pressure started increasing to the point where they could wean the medication, meaning her heart and little body was doing some of the hard work. People don't realize how strong these little babies can be. With Alyssa it was such a shock to everyone on the unit that she became so sick, because she was doing so well for the first two weeks. At the moment, she is on 30% oxygen, they've decreased some of her nitric oxide and some of the settings on the oscillator. Because of all the fluids/meds, she has been given this week, she is full of edema (lots of swelling over her little body), she looks like a cute little marshmallow over her abdomen, and her eyes are so swollen she can barely open them. Now they are trying to take her off the paralyser meds to see how she copes.



Will all of the oxygen she was on, there is a risk of having a bleed in the brain, which is very scary and another fear we had...Today we finally had some good news...no bleed, and although it will take time, Alyssa is trying to fight off this infection, and is heading in the right direction. Once she is able to move more, the fluid should start to come off as well.



As for Jessica, the poor little thing isn't having many breaks. Her belly started looking more distended yesturday, so an Xray was done. They found more air in her belly as they did the first day she was born, and made the decision that an exploratory laparotomy(surgery to open up her abdomen and take a look around) had to be done to find out where the air was coming from and then to pull the piece of bowel out that was damaged in hope that it would heal. Dr. Rob told us that he wanted to do surgery that day because she was stable, and could get unstable very soon. All the OR's were too cold for a micro premie like Jessica, therefore they had to bring the OR to Jessica,and surgery was performed in NICU in an isolated room. Surgery was a lot longer then we all thought...there were many more complications then initially thought...instead of just having one isolated damaged area of small bowel, there was multiple areas, and you can't start pulling out the bowel everywhere, therefore they decided on two major areas of damage to pull out, and hoped that all the area in between would heal on it's own inside the body. The first area was around 18 cm from the stomach, which is much higher then they like, they prefer the damaged area to be closer to the larger intestine...which is where the second piece is pulled out. Her diagnosis is called NEC...and maybe next time when I'm less tired and after I've read on it more myself...I can explain it better. So, we hope, and pray that she has enough small intestine to survive, we won't know for a while until healing starts to take place on the outside. It will be a very long process when feeding is able to begin, and I'll explain that more down the road, when we get to that point. Dr. Rob told us the 48 hours after surgery are critical to see how her little body handles everything, especially her lungs and heart. So far, she has been stable, and was stable during the surgery.
I know a lot of people are reading this, some family and close friends, and other people who know us, but maybe not really well...if you have an extra couple minutes in your day please say a little prayer for the girls. We had the girls baptized on Wednesday when Alyssa became very sick, it was a small little ceremony with Keith and I, the nurses, my parents, Father Walsh and the Chaplain Elaine. Jessica's godparents are my brother Randy and my sister in law Tammy, and Alyssa's godparents are my matron of honour and best friend Heather, and Keiths' best man and good friend, Trevor. Once the girls are out of the hospital we'll have a more formal ceremony, we just wanted them to be blessed to help them through all ups and downs of the NICU. Also for anyone that has been trying to get a hold of us, we've been staying in a parent room here in the hospital since Wednesday and will be here until Monday to be closer to the girls, our cell phones are not on in the hospital. You can leave a message at our house, and we'll try to get back to you when we get a chance.
Thanks to everyone for thinking of us and praying...We need to have a huge party when these girls can come home.