Getting used to the NICU

Time to update the blog again...one week later. My days are so mixed up, it's hard to remember everything that happened this week. Keith had this past week off work as well, and it was my first week home so a routine schedule has not completly been established. Basically we get up in the morning early enough to drive Emily to daycare (somedays later then others), and then head to the hospital to spend some time with the girls before rounds. Rounds happen every morning between 9-11am, where all the team members make their way to each baby in the NICU and discuss the plan of care for the next 24 hours. It's a good time to learn the details of what is going on, and ask questions, or at least let the Neonatologist know that we'd like to chat after rounds are through. By the time rounds are finished we have a little more time to spend with the girls and then it's lunch time, so we have a little break, usually in the Ronald McDonald room, which is a great family room, with comfy couches, baked goods and fresh pot of coffee...also lots of toys and a craft room for the kids.
The days go by extremely fast...I pump every 3 hours, so that takes up time, and in the afternoons is when I usually get to do kangaroo care, which is the skin to skin cuddles with the girls. Before we know it, it's 4pm and time to go and pick up Emily. We then spend time with her until she's sleeping, and I try to get back to the hospital from 8-10. Because I can't drive, this is sometimes still a challenge. When Keith's mom was here, she was able to stay with Emily when Keith and I went in, and also she drove me one night, and I've had friends take me in other nights. My parents came back today, yipee!! and I'm sure they will drive me in the evenings if I'd like, or at least be here, if Keith and I want to go in. I have taken a couple nights off (like tonight) and called right before bed for an update. Although the day goes by very fast, I still feel exhausted at the end of the day. I'm having much less pain, almost back to normal, and my strength is also better...but no marathons for me this year, hopefully next year.
Lately Alyssa has been able to come out of the incubator for kangaroo care every day, which is awesome. When the girls come out, they like it to be for over an hour, because like I mentioned before ( I think) it is the transition from in and out of the incubator that is hard on them. Alyssa's vitals have been excellent everytime she's been out. She's been quite stable all week, and was up to 2 lbs yesturday!!! However she lost 20 grams yesturday, hopefully she'll be back up again tomorrow. They heard a murmur when listening to her heart, but because she hasn't had any major changes in oxygen or her other vitals, cardiology has not been in to see her yet, and no further tests have been done. She also started taking small amounts of breast milk this week, and is now up to 2 ml every 4 hours, and tolerating well. She is pooping and peeing, and is usually on room air on the ventilator with low pressure support. They want to keep her on the ventilator to help her grow.

Jessica has had an up and down week. Her perforated bowel has remained relatively stable...she continues to drain some serous fluid, but no more then before, actually less and she had her first poop yesturday, which is huge!! So things down in that area seem to working. She is still NPO, meaning she can't have milk yet, only calories through her IV, because of the bowel issues. She is also gaining weight and is only about and 1 oz and 1/2 less then Alyssa which is really great. She also has a murmur, but hers is louder, and more concerning therefore she had an ECG done to take a closer look. She has something called a patent (meaning open) ductus arteriosus (PDA), which Alyssa most likely has as well. Jessica's is a moderate size PDA. When babies are born and they let out their first cry and take their first breath, the ductus arteriosis, normally closes, and that's the end of that. However premature babies who don't cry and take their first breath can still have this open, and it can, or may not lead to problems. Instead of the blood getting reoxygenated in the lungs, this PDA can shunt the blood back to the body deoxygenated, and cause increases in the oxygen needs for the baby. When the babies start showing major changes that this PDA is affecting them, there is two options: 1) medication...which Jessica cannot take because of her bowel issues, which the medication can further disrupt...or 2) surgery to close the vessel. Right now, we're playing the "wait and see" game...hoping that she will grow bigger before we need to resort to surgery, or best case scenario, the ductus will close on it's own, which is possible but unlikely with the size of it. Alyssa would be fine to take the medication if needed because she has no bowel issues.
Jessica has been like a yo yo, with her oxygen levels. She's usually between 30-40 % oxygen, and those numbers change constantly as her oxygen saturation continues to go up and down constantly as she can't decide where she wants to be. Today I was able to have some cuddle time with Jessica which was the first time in over 3 days. She's been too unstable with her oxygen and also having lots of dips in her heart rate over the past 4 days. They started her on some caffeine a couple days ago, which seems to help regulate her heart rate better. Now she is only going down in her heart rate when being suctioned, when before it would happen more frequently when being handled and also just for no reason at all. They also started her on antibiotics to try to rule out an infection as her white blood cells have been up. So lots more going on with Jessica...Good news for her though, is that her color in her toes is completely back to normal!!
Alyssa loves to lay on her tummy, and always wants to be covered up, Jessica also loves to be covered up, when on her back. Both of the girls have much better color now, they aren't as red as they were the first couple of days. Tomorrow they will be two weeks old...it feels like they've been here over a month. tomorrow they also have U/S scheduled for their heads, hopefully everything will be ok, and they will find nothing to be concerned about.
I think that all the news for this past week. Alyssa and Jessica continue to be little fighters. I can't wait till I can hold them again tomorrow!! Keith is back to work tomorrow...Mom and Dad are here to help again. A girl really needs her Mom and dad at times like these.