11 week mark!

Well, I'm a little late this week but A LOT happened this week so it finally took me until now to update the blog. I also don't have the best pictures of Mckenna and Carly this week but I will make sure they all get enough pictures on here. So, here we go....

Mckenna: Mckenna finally had her brain surgery on Friday last week. They decided to put a shunt in her head because after they did the CT scan of her brain, the stint wouldn't have helped the right area where she has clots. So, she went into surgery on Friday at 11:50 am and came back to the room around 3 pm. They also had to check to make sure she didn't have a fistula (connection) between her bowel and bladder. They assumed she wouldn't because in girls the reproductive organs are in between the bladder and bowels. It's more common in boys. So the neonatologist surgeon went in laproscopically through her belly to make sure that everything was good (which it was- everything is just fine!) and then Dr. Churney (neuro surgeon) started the shunt procedure. They cut two incisions on the top of her head; one near the front and one near the back to make sure they threaded the long tube that goes from the brain down her body. The tube runs down her neck and across her chest and down into the abdominal cavity (not into the stomach) where there is a lot of excess fluid just floating around anyway and then the body will just absorb it. Dr. Churney went in as well through the small incision made in her stomach to make sure that everything took proper placement. Sounds pretty easy huh? The surgery went really well and it takes about a week to recover completely. Hopefully everything stays okay with the shunt. She does have a 30% chance that it will clot up (the shunt) with leftover clots from the brain in the first couple years so we have to watch her pretty carefully for anything unusual. Hopefully nothing will happen and if it doesn't then she probably won't need it replaced with a new one until she's about 12 years old! That's sounds pretty great to me! The shunt does look a little big on her head. It kind of looks like a small ridge that rounds across her head. It does look a little big now but they said that in about a year when her head gets bigger it will not even be noticeable. Especially if she keeps on growing hair as fast as she does right now!

She has recovered well in the past few days. She is off the ventilator and was able to start oral feedings without being fed through a feeding tube. When she's awake she still has a little pain from the incisions but is still acting like sweet little Mckenna. She's always been quite a happy little baby which is amazing with all she's dealt with. And her coloring looks so much better! I didn't realize how pale she normally looked before this surgery. Now she looks nice and pink! Such a pretty color on a baby! Anyway, nothing else really new except she did break the 5 lb barrier today so she is finally just in the five pounds!

This picture was before surgery, I'll have to get a picture after for next week.

Madison- Well, one of the best news of last week is that Madison was able to pass all her tests and was stable long enough that they sent her home with us! We couldn't believe it because it is about three (four?) weeks before her actual due date so she is quite a spunky little fighter. It has been so great to have her home! I think one baby is pretty easy but I have to think that way since there's two more still to come! I think I had said before that she is a noisy baby and in our quiet house it really sounds noisy. But I think she loves being home! And she's eating like a maniac. She was eating 60 mls feeds before coming home and now almost always downs 90 mls. It does help to have babies in the NICU because they have them on a strict schedule in there and so she is actually quite scheduled. I was so worried she would wake up every 1 1/2 to 2 hours to eat but she will actually go 3 1/2 to 4 hours before she eats. So nice.... And she weighed 5 lbs. 5 oz when she left the hospital last Wednesday (and 18 inches long) and we went to the pediatrician on Monday and she weighed 5 lbs. 10 oz.! So she is definitely gaining well. The only thing I don't enjoy is having to lug her back and forth to the hospital everyday but I also think it's good that she sees and is around her sisters everyday so she doesn't get lonely and miss them. Who knows if they even miss each other, maybe that's me making it up.
Anyway, we love our little girl at home and can't wait for the others!

Madison and Dad coming home through the door!

Her first real outfit at home!

We just had to show this picture. Madison gets crazy when she wakes up to eat and sucks her hands or whatever is near her before she gets the bottle. One night I was going to kiss her while waiting for the bottle to warm and she grabbed my nose (she has quite a grip) and then started sucking on her hand. We thought it was funny, maybe it's just funny to us. Oh, and she had my hair in her other hand. I guess no earrings for a while....

Carly- Oh Carly, Carly.... Carly just about came home with Madison last week but then had a bad morning the day she was going to go home. I was a little nervous already about taking her home (she wasn't quite as stable with breathing and eating and Madison was) so it was a good thing she acted up because it gives her a little more time in the hospital for some help. They worried she was still having breathing problems but her lungs are great and then they ran a ticker tape on her stats for an hour one afternoon and believe she just has pretty severe reflux compared to her sisters. That's why she holds her breath all the time. So they put thickener in her feeds but then they did a Swallow test on her yesterday (watch with an xray in real time where the formula goes; whether it goes down the esophagus like it should or down the trachea into the lungs where she could develop pneumonia) and she does let it get down her trachea but her vocal chords stop it and push it back out to the esophagus. When she was on the thickened feed it was worse then when she didn't have the thickened feed so...... they took her back off the thickener! I don't know... Carly will probably be the last one that will go home. Kind of ironic (as Dr. Myers told us) that the biggest one without the brain surgery might be the last one to go home. But reflux just takes a lot of time (up to six months old I guess) to recover from so we just need her to get a little more stable before she comes home. We'll see what the next week brings with her. She is gigantic now, 6 lbs. 2 oz! So good, she is doing so great!

Also don't have a lot of pictures of Carly this week but she is so happy in this picture! I do love to see them smile, it's the sweetest thing I can think of!

10 weeks!

We are in double-digit weeks! I just can't believe how fast they are improving right now. They said that once they get on a good run of weight gain, they just seem to take off! It has been kind of a wild week so hopefully I can remember everything:

Picture of the girls together at 10 weeks old! L to R: Mckenna, Madison, and Carly

They love to touch each other, it must be comforting. Here Madison looks like she is checking Mckenna's temperature on her forehead.

I didn't get this picture at the perfect time I wanted. Carly is on the right, Madison on the left and here it looks like she is kissing Madison's head but earlier it looked more like she was sucking on the back of her head.

Updates:

Mckenna- So I guess I shouldn't have said that Mckenna was having surgery last week. They ended up postponing it because she had kind of slowed down on her breathing, eating, etc. improvements so Dr. Churney is waiting a little longer before he has to make the permanent decision. He's trying to give her a chance to take care of it on her own. But in the last two days she has improved again so possibly (and I do mean possibly) she might have the surgery this week. If not this week, then next week. Things change back and forth all the time in the NICU.... there's a lot of planning and then the planning didn't matter cause things were cancelled. And it's not unorganization on the hospital's part, it's because of the girls. They really act according to what the girls do not according to what the doctor's and nurse's want the schedule to be. I love that they put the girls as first priority- it really has been a great NICU experience for us. Also, we won't know if they are going to do a shunt or stint until after surgery since Dr. Churney has to wait until he gets into her head to know what will be best for her. Good thing we have a lot of confidence in him! Besides the big brain surgery, Mckenna is doing amazing. Still the best coordinated eater (sucks, swallows, breathes the best) and she just had her feeding tube pulled out a few days ago and I think it will stay out (except for post surgery for a few days) permanently. Hopefully.... She also is gaining just as well as her sisters, she's just about a pound behind but she should catch them eventually. She is 4 lbs. 8 oz. so getting close to 5 pounds! Oh, and she is still being tapped (brain liquid sucked out of her head) every other day and they are taking out about an ounce when they do it. She still tolerates it pretty well but I would assume she gets a big headache in the process (I know I would) because she is a little sensitive for an hour after. But with surgery, that would be stopped. We'll see what they decide this week.

Mckenna always has the sweetest happy face. It's rare that she looks upset. Such a happy little girl, especially with her major stuff she is dealing with right now.

Madison- I don't know how I missed it but Madison has become the front runner of her sisters of first to go home. She has had her feeding tube out well over a week and eats at least 2 ounces of formula right now. She is actually quite a little piggie. She makes a lot of noise while she eats and really acts like this is her last meal. But she is the best at not desating while she eats (her sisters are still working on this). We actually were able to room in (at the hospital- they have separate rooms set aside for this) with Madison and Carly on Friday and Saturday night. What they do is put the babies in the room overnight with mom and dad. The girls are set up on monitors still so that the nurses can make sure nothing goes wrong. But besides that we take care of them through the whole night. So we change their diapers, check temperatures, feed them, report on anything strange or not good that happens. I was very excited to do this but after the first night, Kyle and I both said to each other "What were we thinking having this many kids!?" It was pure chaos..... They had tried to get them on the same schedule before night started but Madison ended up eating early and Carly late right before they came in with us so they were exactly 1 1/2 hours apart in feeds. Plus, Carly was quite a pill. I think she must have been so overstimulated with mom and dad alone in the room with her and in a different environment that she wouldn't go to sleep for about 4 hours! So by FOUR in the morning, we finally were able to get them closer together on the same schedule and we were actually able to finally fall asleep! AND, that was only two, we haven't even thrown Mckenna into the mix yet. I knew I would be busy and tired but good grief. I learned that I really am going to need my mom (who is coming to stay for a few months once the girls come home). But, after such a crazy Friday night, we made sure that they were on the same schedule on Saturday night before they came to the room with us (and had taken their vitamins earlier in the evening which gives them an upset stomach) and Saturday was actually a pretty smooth experience. They both slept for four hours between two of their feeds! Amazing! Now I know it won't always be like that but I at least have hope when we can have SOME good nights like that. Anyways, this is going to be a lot of work... So don't expect blog posting to be quite as good when they come home.

Anyway, Madison did great for the two nights but Carly struggled a little with desats, etc. so there is a chance that Madison could be coming home in the next week. But, like I said with Mckenna, that doesn't mean it could happen. She could take a step backwards and not come home until a few weeks later. We'll just see. When I think of taking care of three babies, one sounds like a piece of cake. I did make a mistake on Madison's weight last week. I said she was 4 lbs. 13 oz. and she was actually 4 lbs. 10 ounces. But are you ready for this? Through most of the week she gained up to 4 lbs. 13 ounces so not a lot of weight gained in a week. But then, the two nights she roomed in with us she gained 9 ounces in those two days! So she is now 5 lbs. 6 1/2 ounces! As of yesterday she was only one ounce smaller than Carly. I told you she has been eating like crazy! So maybe they will all easily be over five pounds before they go home.

I put this picture of Madison because she has serious cheeks and a double chin. Good thing it is so adorable to have those at this age! We love to touch and pinch her little double chin, I think it's adorable!

Carly- I kind of already gave Carly's report in Madison's. She stayed in the room with us. I think we have learned that Carly is going to be the most sensitive baby. She cries the easiest (mainly when she wants to eat and we just aren't moving fast enough to get it to her). She also drinks her bottle like she is in the Sahara and hasn't had water for days! The problem that she has is that she doesn't breathe when she sucks. It's like she gets so panicked that it is going to be taken away that she decides breathing isn't necessary. And then she desats and you have to pull out the bottle until she catches up with breathing but she gets so mad that you have taken the bottle away. It's quite cute in the middle of the day but at 3 in the morning, so frustrating... But after she has the edge taken off her hunger then she gets coordinated with her eating and does great through the end! So she might need a little more time in the hospital to get better at that. We are assuming that she is probably going to go home at the same time as Mckenna (if Mckenna recovers fast and well from her brain surgery) but once again, that could all change. They also got concerned again with Carly's bigger right arm (like she had at birth and still has) and so they ran tests but we don't have the result back yet. They are pretty sure it is a hemagioma (I'm sure I slaughtered that word) which is kind of like a tumor that sucks blood from the blood vessel it's next to. It's typical for people that have it to have a limb larger than the other one and it's discolored (kind of like a port wine stain). They can laser out the little tumor-cysts things but if they are too big she might just always have a big arm. We'll see how it progresses as she grows. Her right arm is very functional and it's not life threatening (they've already done tests to make sure of that) so we'll just wait and see. She is still gaining weight, just a little slower this week. She weighed 5 lbs. 7 1/2 ounces.

Don't mind me in the picture but I put this up of Carly because she LOVES to cuddle. It's the best way for her to calm down. She just melts into you when you hold her like this. And Mom loves to cuddle too!

They are doing so well and we are so blessed! They are getting so close to going home, I can hardly believe how fast it has gone!

Nine Weeks Old.... and 2 Months Old!

I'm so excited because they are all in the same bed! Hooray! It took a lot of persuasion on Kyle and my part to get them together but the doctors had their monthly meeting last week and talked about our girls going together and it was kind of split down the middle but the director over the doctors sided with us! They had to put them all in isolation for the rest of their time in the hospital which just means that no other baby can be put in the room with them (and I'm not complaining about that). The doctors and nurses also have to gown up every time they handle our babies but we don't we just can't linger in the waiting rooms of the NICU which is no problem since I never do. Who has time to linger right? So I didn't get any pictures of the girls alone, just all together. We went to Wyoming this past weekend (it was very hard to be away from the girls for a few days) and had a great time but our battery on our camera died on the trip so I could only snap a few pictures of them all together (and a video!). A few updates on the girls....

Mckenna- Mckenna started out the best bottle eater and is still phenomenal. They took her off the feeding tube first but because she is still so small she tuckered out too fast (and having her brain liquid drained out every other day does help her cause either) and so had to go back on the feeding tube. She was also weaned of her caffeine but still needs a little pick me up until her lungs mature a little bit more. We also learned this week that Mckenna is going to have surgery on her brain tomorrow (Wednesday). We knew that the Reservoir in her head was only temporary for her stay in the hospital and that she would need something more permanent. I think I talked in a past post that Dr. Churney (her neuro surgeon) was debating between a shunt and a stint for this first surgery. He probably won't know which one he will end of up doing until he gets into the surgery (how scary does that sound but he is more than capable so we feel safe with him). So we probably won't know what he is going to do until after the surgery is done. If she gets the stint there is a chance in a few months that it will resolve the blood clots but if it doesn't she will get a shunt put in. If she moves to a shunt then she will probably have to have multiple surgeries as she grows up and the shunt shortens. They actually run the shunt from her brain (the ventricles where the cerebral liquid lives) down her neck, across the front of her chest and into the stomach and that's where it will drain. So we'll see which one is going to work. We appreciate all the prayers on her behalf through this hard time. Sometimes it breaks my heart that such a little baby has to go through such an invasive surgery but I wouldn't have it any other way if it is going to make her life more full. And she is finally over the 4 pound mark at 4 lbs. 2 oz. She will probably loose weight through this surgery but hopefully she can catch up easier after that.

Madison- Madison has kind of taken over as the best eater right now. They took out her feeding tube about 4-5 days ago and she has just taken off. In fact, she is kind of a pig in the eating spectrum. She drinks it like it's her last meal! She used to play around with her bottle but they said that now that she doesn't have that huge tube down her throat it probably helps her eat better. She is also completely off caffeine and doing quite well. We predict that she will be the first one home (it would have been Mckenna except for her brain stuff has slowed her up) and hopefully I am ready whenever that happens. She is trying really hard to catch her sister Carly and weighs 4 lbs. 14 oz.

Carly- Carly is doing so much better with her desats but she is still on a full dose of caffeine per day because she just needs that little help. I'm sure she just needs a little longer to develop her lungs and then she should be great. She is also a pretty decent eater and more than half the time finishes her whole bottle. (I should throw in Mckenna almost always finishes her whole bottle as well) She is such a chunk compared to her sisters and now weighs..... 5 lbs. 5 oz. Crazy! So I guess I am probably not going to have to worry about preemie clothes for her, she is already getting big in the preemie clothes.

Everyday they are getting more alert and actually looking at us more and smiling more which is so great to see. I'm feeling like they are getting closer to acting like newborns and I can see a little light at the end of the tunnel!

Here they are together! L to R: Mckenna, Madison, Carly

I thought this was a really cute picture because you can see all their faces. It goes in order: Mckenna (oldest-left), Madison (middle-middle) and Carly (youngest-right).

I hope that this video works out. I am talking in it if you have sound (don't make fun of me, I'm talking baby talk in it). Enjoy!

8 Weeks!

This is just a picture thrown in with this weeks updates. I thought it was so cute. Carly loves to touch Madison and I know you can't tell in this picture but their little fingers are interlinked. How cute is that! Madison on the left and Carly on the right.

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!

Mckenna getting a bath - she loves them just like Carly!

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!

Madison's bathtime!

Just had to throw another cute picture of these two together!

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!

Carly the first week of her life.

Carly now at 8 weeks old.

Finally..... I'm Starving!

I know.... yet another posting. But there has been so much this week that I have to put another post or else I will forget everything by next week. Today was another day of fun stuff! As you can see in the picture below, Madison and Carly were able to start attempting to bottle feed today! I took a picture of Carly below but I don't know where my brain was to get a picture of Madison. They prepped us with knowing that they probably won't drink or be able to breathe very well so don't be disappointed. Well, Madison drank 10 mls of her bottle (I think she is around 34 mls a feeding) which they said was awesome for her age. And then, not to be outdone, Carly drank 25 mls of her bottle! (She's around 42 mls right now) So exciting, hopefully they will be eating their full meals from a bottle in a few weeks. It does take them that long to work up to the full amount. Mckenna should start tomorrow so maybe I will have my brain on and make sure to get a picture of her as well.
Carly's first bottle feeding- even though the nurses fingers were right there, she really was holding onto the bottle.

Dad feeding the second half of the 25 mls to Carly.

And then there's another thing different too (two things). Yes, they are in the same outfit. The night nurse actually found the same outfit for Madison and Carly to wear (the one on Carly belongs to us) and then found an additional one for Mckenna also! So they all had the same outfit on today. And yes, my brain truly was missing today because I didn't get a picture of Mckenna's outfit as well. I promise, I'm coherent enough to take care of three babies. At least I hope.... Also, I don't know if you can tell in the picture but Mckenna, Madison (left below), and Carly (right below) are all off their nasal cannulas! No more oxygen help! They might have to go back and forth on them so we don't want to get too excited, but how exciting that they did so well to go off! I actually feel like they are moving in a great direction.

We are a little worried about Mckenna's head draining right now. They are having to up the amount of liquid they are taking out so hopefully that isn't going to mean a bigger possibility of a shunt for life but we'll just pray and hope for the best. I think my family is having a special fast for her this Sunday.

We're so glad they are improving so much! And we might be really biased but they are really looking awful cute and we feel very blessed!

Which one is which?

Just thought I would put up one more post for this week because we had some fun pictures in the last couple days. First, I got to hold two of the girls together! Can you tell who is who? I will say that I only held them like this for a few minutes because it was more difficult than I realized. And I know they are only 3-4 lb. babies but they started to get heavy, plus, when one spit out their pacifier, I didn't have another hand to put it back in. Now, you ask, how am I going to hold all three? I don't know... I'll get back to everyone on that.... By the way, this is Madison (right) and Carly (left).
Yesterday when we came into the room this is what we found! Two of them have graduated into cribs (Madison and Carly if you didn't read above). When Kyle came in they were facing each other and Carly was touching Madison's arm but that's about all the interest she has in Madison. Madison, on the other hand, loves to just stare at her sister! When she is put back in her crib she will turn her head to be able to look at Carly. So funny! They look so cute together don't you think? Oh, Madison is on the left and Carly is on the right.

A side look at the girls (once again, Madison on the left Carly on the right). Look at the size of the pacifier in Carly's mouth. And she is the big baby (almost 4 lbs. 5 oz. now).

Here's their crib. When Mckenna joins them (hopefully) they go to a gigantic crib compared to this. Apparently they only have this small size and then the big one. There's no in between.

Oh, and I realized I have never shown a picture of the girls room in the NICU. See the crib in the very back. And then Mckenna is in the incubator to the left. I tried to get their nurse to turn for the picture but she was camera shy. The room looks huge now that there is only a little crib and one incubator in it. You should have seen it with the big incubators before. Very crowded.

I just had to show a picture of cute Mckenna because she is left out of the crib! So sad, she even looks like she's sad about it here. Don't worry, we'll get you with your sisters soon!