So sorry for the lack of posting lately. I am more than a little sleep deprived!! The girls are doing really well! They are nursing up to 6 times per day! So that means I am at the hospital pretty much all the time. The past couple nights I have been going home to sleep after their 8 pm feed and then I come back at 5 AM to nurse them again. The nurses either give them a bottle or feed them through their tube.
They had been plugging along really well, but yesterday had kind of an off afternoon. They didn't want to wake up to nurse, and so we fed them through their tube. It was pretty disappointing because they had been doing SO good. Its totally normal, but really frustrating. The highs and lows of the NICU are pretty crazy. If there is anything that preemies teach you, its patience.
In other GREAT news the girls are off all oxygen! This happened on Thursday the 6th. This is so amazing because they mentioned Monday that they may need to go home on oxygen. Which of course really bummed me out. At this point they were still on the vapotherm, which is highly humidified oxygen. They were on a very low amount, but we couldn't get them down past 24% oxygen. One of the problems was that the humidity kept condensing in the tubing and water would go into the girl's noses and down their throats. This would happen about 5 times per hour, and so obviously make it difficult to breathe. Finally one of our nurses asked if we could change to just regular oxygen and the doctors agreed. We had been trying to do this for the past week but the doctors didn't want to because regular oxygen tends to dry the babies nasal passages out too much. However, I figured it was better than the girls drowning all of the time! We tried it on Wednesday, and instantly they were better. Soon they were both down to room air with just a little extra when they nursed. By the end of the day though, they were getting dried out and pretty stuffy. Poor little Vivian could barely nurse because she couldn't breathe through her nose! The doctor came in around 11 pm to make sure it wasn't anything other than a booger problem. The nurses suctioned her and she finished nursing just fine. Again at 530 AM she was really struggling to breathe again, so the doctor came back in and suctioned a big mucous plug out of her nose. Sorry if thats TMI lol. Then he said why don't you just try them off the oxygen since they are just on room air and they are getting so dried out. I was all for that!!! It took them about 12 hours to settle in, but the nurses were great about just repositioning them when their oxygen saturation dropped so that we didn't have to put them back on it. And today they are doing awesome breathing on their own, and even when they occasionally choke and desaturate with nursing they are able to bounce back very quickly without the oxygen. I am SO THANKFUL!!! It would have been ok and not abnormal for them to have needed oxygen at home with how early they were, but its so great that we didn't have to do that.
The doctors are saying discharge by the end of the week. Ahhhhhh!!!!!!!!!! All of a sudden I feel completely unprepared. I wasn't expecting a lot of the emotions that I'm feeling. The time has gone both fast and slow. It will be 10 weeks on Friday that they have been here, which I can hardly believe. I am so ready for all of us to be home, but am also nervous about it. I know that they girls are almost ready, but I have come to rely on the nurses so much, and I will really really miss them. I feel like I am ready, and I do know the girls and their patterns and what they like and don't like, but its intimidating to be the one to make all the decisions for them. Our primary nurses know them as well as I do, and to not have their support and be able to ask their advice is scary to me.
I have a very fierce protectiveness of them, like nothing that I've experienced before. I was protective of Norah as a newborn, but it was nothing like this. I have experienced so much fear and anxiety since I found out about them 18 weeks ago, and its hard for me to let go of that and relax. There have been so many sleepless nights and so many long days. I find it hard to trust anyone but myself, Kyle and the nurses with them. I really do want to share them with everyone, but it will be hard for me at first so please be patient! They are still very fragile and will need low stimulation and lots of nursing and sleep when they first get home.
I am amazed at how much they are changing and becoming like newborns. They definitely have their preferences! Most of the time they will wake up around 3 hours and scream until they are fed ;) The other night the nurse was feeding them through their tube, and they both woke up and were furious that they weren't nursing. I was planning to sleep through that feeding, but they woke me up with their crying! I held one and the nurse held the other and the girls angrily sucked on their pacifiers and glared at me;) They also have longer awake and alert times and love to be held and talked to. If they are fussy they will usually stop once someone picks them up, unless they are hungry. They are both drama queens and have a certain way of sucking on their pacifiers to express their displeasure. It is HILARIOUS. And they both sound the exact same way.
Nursing is still going great, they can nurse up to 6 out of 8 times per day. We are slowly working up to that, because we don't want to tire them out. Today after the break they had they are nursing very well. They did say that if they wake up before 3 hours I can nurse them at 2 hours if I want. That has been really nice to add that flexibility in because sometimes they do want to eat at 2.5 hours instead of 3. They have also taken a couple of bottles with no issues, which is good to know that they can! The past couple days they have been a little on the low side with weight gain, so the doctors want them to have 2 feeds of fortified breastmilk to give them some more calories. They increased their fortification from 24 kcal/oz to 26 kcal/oz. As I have said before, I'm not a huge fan of the fortifier but if they need it, they need it. If they need lots of weight gain to get out of here then so be it. They both had big weight gains last night so thats good. Vivian weighs 5 pounds 8 ounces and Mary finally hit the 5 pound mark. I can't believe I almost have a 6 pound baby!
So discharge depends on a couple of things...how they are eating and when their last apnea/brady was. They have to be taking all 8 feeds orally, and not have had an apnea/brady episode in 7 days. Mary's last was on Thursday, and Vivian's last was on Friday. So discharge is tentatively set for the end of the week depending on how they do with feeding. I'm really hoping that they can be discharged together, and I'll push for that. Having one here and one at home would be pretty difficult with the whole feeding thing!
Again, thanks so much for your support. These past few months have definitely been the hardest of our lives, but God has seen us through, and we are beginning to see the light at the end of the tunnel.
Oh, and mother-in-law of the year award goes to Lory Chaplin for potty training Norah ;) The past couple days she has been going in the toilet 4-5 times per day! She isn't completely there yet, but its one less thing for me to worry about when we get home. I really cannot thank my in laws enough for everything. We would not have made it through without them. Lory has been living at our house the past couple weeks taking care of Norah and cleaning and cooking and doing my laundry, and Larry comes down on the weekends. We owe them BIG TIME!
Vivian is in blue and Mary is in pink/red, and viv is the one wrapped in a towel and the one crying;)
