Well, as you have read from the numerous posts of last week it has been a great week! I feel like we have made such huge strides forward. Hopefully that doesn't mean that we are going to go backwards soon. Since the girls are 8 weeks old today (2 months old on the 11th) I would put a picture of what they looked like their first week and now this week. It is CRAZY how much they have changed and improved. I think that I sometimes don't even remember how little they used to be. So even though it sometimes feels like they are never going to leave the NICU, I guess we are getting closer.
Mckenna- I should look back at the older posts but I'm just going to update and if I repeat myself, oh well. Mckenna started bottle feeds on Friday and of all the crazy things, she is the best eater of the three! I guess I should have guessed that with her being the best breather. I think sometimes everyone expects less of Mckenna with all the brain stuff she is dealing with but she is one amazing little girl. I think she deserves to be a good breather and eater since she might have to deal with the unfun life of shunts and brain stuff in her life. She is such a good eater that she drinks her whole bottle and has been for a few days. They are only bottle feeding them one time a shift to let them get used to it and rest. It really wears them out. She is also still off her cannula and doing so good and they are starting to wean her off caffeine as well (I don't know if I had ever said that they are on caffeine as an additional stimulation for breathing). She is also officially out of her incubator and in a crib now and they are still debating if she can be with her sisters. We will see this week. She weighs 3 lbs. 13 ounces and just hasn't gained in the last four or five days so hopefully she starts picking up the pace. We all know she eats all of her food.
Her brain is still being drained every other day and they are up to draining 26 mls. That's almost an ounce. I can't even imagine having that much liquid drained out of my head every other day. But she tolerates it well so maybe it relieves pressure. Dr. Churney, Mckenna's neuro surgeon, looked at her head ultrasounds this week since they are going to need to make a more permanent decision before she goes home of what they are going to do. She still has quite a large blood clot where the liquid drains out so they are looking at a permanent shunt which they would need to replace as it shortened and she got older. But they are also considering a stint (spelling?) which would go through right where the blood clot is so that she could drain. It also eventually gets to short as she grows (like it would be only in for a few months) and then it might take care of itself or it might require being shunted but it at least buys her a few months to see if her body can take care of it on her own. Or she can just resolve it in the hospital and then we don't have to worry about any of this. But I'm not planning on that one because it happens but it's very rare.... and I don't want to get myself all set up for a disappointment. Dr. Churney said he still has about 3 weeks before the decision needs to be made so they can get the operation done. We'll just wait and see. Now I can see why people get gray hairs, things with your children can be quite stressful and I hate things that I have no control over. Oh well, I guess I better get over that. I do need to remind myself all the time how much we have been blessed with how they are doing.
Mckenna her first week of life.
Mckenna now! (8 weeks old) We think she looks so much like Madison right here.
Mckenna bottle feeding- I swear if she was strong enough she would have stolen the bottle away from me!
Madison- There's not much to report on Madison which is great! She is really doing so well with her breathing just like Mckenna. She has also remained off her cannula and doing great and also being weaned off her caffeine. Madison is such a grunter. She just likes to make noise all the time! Even drinking her bottle she will grunt through the whole thing. I'm guessing she is going to like to talk. They are all starting to get to the point where if we don't put them down they will just try to stay awake and look at us. They all love to look at faces and really respond to voices. They love their Daddy's voice. It's quite cute when he starts talking how they look for him. Madison is drinking about half of her bottle feeds so far (I think she has drank a full one once) and she is a really good burper. I pretty much sit her upright to start rubbing and patting her back for burps and she does it on her own. I hope that doesn't mean she is going to throw up well! The girls are all also working with an occupational therapist to do exercises with their mouths and legs and arms to strengthen them more like a newborn would be. They haven't had that practice since they haven't been able to float around in amniotic fluid for the past couple months so they work with them and we will do exercises when they come home as well. Baby jazzercise! It's amazing how a couple days of work from the occupational therapist helped the girls so much so they could suck better on their bottles for feeding. We have also been told that they are all doing so good at bottle feeding for such young babies. Hopefully they will be on full feeds and off the feeding tubes within a few weeks--- it does take time to get them to that point. Madison is sitting right at 3 lbs. 15 ounces and then she bounces up to 4 lbs. 0 ounces and then she comes back down so hopefully she can get above 4 lbs. this week.
Madison the first week of life.
Madison 8 weeks old now!
Carly- Carly has a ravenous appetite. She always gets hungry way before her feed and by the time you give her the bottle she is ready to suck it to death. She can get a little overzealous and tries to suck too much before breathing and then chokes on it so we are working at that. She also has to be on a special bottle because she sucks in too much air compared to her sisters. And I'm not surprised she is so hungry, she is getting huge! She is a pound heavier now than Mckenna at 4 lbs. 13 ounces. She is almost five pounds which is amazing. But Carly still has some apneac breathing problems and has a hard time coming out of desat spells so they have had to keep increasing her caffeine and she had to go back on the nasal cannula today. Hopefully she can get through this phase but she could go home with caffeine. I think she is just addicted to caffeine and knows she has to be naughty to get it! Silly girl! Besides that she is doing well and is drinking almost her whole bottle as well. Hopefully she will be over 5 lbs. this week!