1-31-10

We have had a busy weekend! Fiona had lots of visitors... yesterday Nana (Tom's mom), Boo, Uncle Josh, and Aunt Ashley were here. And today we had NeeNee and Poppa (my mom and dad), Aunt Amanda, Uncle Adam, Colten, Jackson, and Adriana here! The boys got to go in long enough to say "Hi, love you Fiona, bye!" They are actually not aloud in the NICU, but our nurse said it would be ok for just a minute. Colten went running out into the waiting room and told everyone, "She's pretty cool!" Haha they are so cute! Nana, NeeNee, and Aunt Amanda all got to hold her!

Fiona is now up to full feeds (17 cc/hr)! She did have a little spitting up today, but nothing they were worried about. She actually hasn't done that since she was at about 2 cc/hr, but I guess all babies spit up sometimes. They were able to wean her vent to 34 bpm today (from 36). Her O looks different every day. There is so much skin on it now! Only a little ways to go! Last night my parents got to stay in the room and watch while Tom and I changed her dressing, gave her a bath, changed her trach ties, weighed her, changed her bed, and dressed her. My dad said now my mom should know why I don't answer the phone when she calls at night! The nurse sat Fiona up while Tom changed her trach ties and I REALLY wish I could have gotten a picture, it was priceless! It was the first time she had ever sat up like that. She had the most surprised/shocked look on her face! Tonight it is my turn to change the ties. Hope I do as good of a job as Tom did! We will continue our learning/training tomorrow and it will be my turn to change the whole trach!

Tomorrow starts a new month which means we get new doctors (for some reason they rotate sections and even hospitals). Not so sure how I feel about that. We loved one of the doctors we had this past month! Guess we will just have to find another one we love!

Lots of Pictures!

She had the binky in her mouth and it fell out and her mouth stayed like this!!


She is looking at Daddy's goofy face, haha!

She looks tiny in the bouncer but so cute with her little dress and socks! And we started giving her the big girl binky and she was actually keeping it in her mouth!
*so sleepy*

Lots of News!

First of all, I know I am slacking on updating the blog, sorry haha!

Fiona is doing great!! They did her first trach change on Wednesday and she did pretty good with it. They did give her some morphine just because it wasn't completely healed and they didn't want her to be in any pain. They did see some puss and a little swelling when they checked it so they did some cultures and it came back that she has a staph infection. They started treating it before they even knew if it was an infection for sure, so hopefully they got it! Tom and I started learning her trach care on Thursday. Our teacher, Chuck, is great! That day we just assisted for the most part. He taught us how to suction which is not too hard, we can now do that by ourselves! He went through all of the steps of how to change it and then I held it in while he changed the ties (which go around her neck to hold it in) and then he changed it. Then yesterday he let Tom change it while he assisted him and Tom did a great job! Hopefully soon we are pros! They are planning on transitioning her to a home ventilator some time this week (whenever it gets here) because it will be what we will have at our house and they want us to get used to it.

She is doing AWESOME with her feeds. Right now she is at 15 cc/hr and will get turned up to 16 at 2pm and then 17 at 2am and 17 is considered full feeds YAY! Yesterday was her last day of the TPN (IV nutrition) because she is now getting everything she needs from the breastmilk! We're not exactly sure where we go from there. The Occupational Therapist came up yesterday morning and was very impressed with how she sucks on her binky! She did say that she's not quite at the point of being able to bottle feed but she is pretty close!

Last night we got to put her in a bouncer and she loved it! She fell asleep in about 15 minutes! We're just so glad that we can get her up and out of bed more now. Every day we are getting a little closer to getting out of here! We're hoping that after she is done with her round of antibiotics and transitioned over to the home vent that we will be going to TIC so keep your fingers crossed!

More good news!

Well first of all, today was Fiona's due date! But the little stinker decided to come 67 days early (still seems crazy!)

We got some good news! If everything goes well with her feedings and vent weaning for the next few weeks they are going to think about transferring us to TIC (Transitional Infant Care). The name of the place is actually The Children's Home, but everyone refers to it as TIC. It is pretty much a mini hospital. It is staffed by doctors and nurses just like a hospital would be. But it is more of a home environment. We would be taking care of her and they are just there to help if we need it or to do things if we aren't there. Here is the link if you want to check it out:
http://www.childrenshomepgh.org/pediatricSpecialtyHospital.aspx

She is doing amazingly well with her feeds. Right now she is at 8 cc/hr! They decided to start increasing her by 1 cc/hr every 12 hours! She is having little to no residuals (milk left in her belly) which means she is digesting everything. She is also a pooping machine which is another good sign that everything is working like it is supposed to be!

She is good very well with her trach. She is much better with the pain than I would be! They only had to give her pain medicine on Friday and Saturday and since then she has been fine. It is still a little sore to touch, but that is normal. Tomorrow they will be changing it to a different brand and a bigger size. The brand they are changing it to has a little bit longer of a piece coming out of the hole and it is flexible so hopefully she won't pop it off as much! Last night she was being very cranky and every time she moved the vent tube would pop off, so Tom and I stood beside her crib for about 2 hours (maybe even longer) while one of us held the vent tube and the other held the binky in her mouth and rubbed her head, haha! She is already spoiled! The reason they are putting in a bigger one is because she has a pretty big leak, meaning that air comes out around the tube and out of her mouth. So she is not getting ventilated properly. Hopefully once they put the bigger one in they can go down on her settings a bit.

She also got her first round of shots yesterday and today...

We are hoping that at the end of this week or beginning of next that the Speech and Occupational Therapists will be able to start working with her. We would also like to get her out of that crib as much as possible! We should be able to start holding her again Thursday or Friday!

Just another Saturday...

Fiona is doing good today! Her feeds are back up to 4 cc/hr. Now hopefully tomorrow they can increase it to 5. I think she is still a little sore from the surgery. She wakes up and gets cranky for about 30 seconds and then falls back to sleep! And the little stinker keeps popping the vent tube off of the trach! She doesn't have much of a neck so everything is kinda squished and her chubby little chin hits it when she wiggles around and ends up knocking it off! It's not a huge deal, we just have to pop it back on. But one of the nurses said as kids get older sometimes they will do it on purpose for attention and because they think it is funny! And I can definitely see her doing that! Even though she shouldn't be moving around too much yet, she still has to have her dressing changed every 12 hours. Tom and I were a little nervous about doing it last night, but we had a nurse that we never had before so we figured it would be better for us to do it than someone that has never done it before. It went just as it normally does with her kicking and wiggling around. Hoefully tonight we can get her washed up because we didn't do that last night... And we should be able to put clothes back on her tonight, she has been a nakey baby since her surgery yesterday!

She got to visit with NeeNee and Poppa last night and today, and now she is visiting with Nana and Great Aunt Kim!

Well other than that there is not much to report, which is probably a good thing! Hopefully things keep going smoothly from here on out!

She doesn't like when you turn the lights on, she squints her eyes like she is doing in this picture! But sucking on her binky is much easier without that tube in her mouth!

FYI

I know most people have never seen a trach or how it works so here is a little diagram!



A tracheotomy or a tracheostomy is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube and is commonly done in an operating room under general anesthesia. A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs. Breathing is done through the tracheostomy tube rather than through the nose and mouth. The term “tracheotomy” refers to the incision into the trachea (windpipe) that forms a temporary or permanent opening, which is called a “tracheostomy,” however; the terms are sometimes used interchangeably.

All done!!

Still sleepy, but trying to peek! AND NO TAPE!!! (except for the NG tube)

Fiona had her surgery at about 9:30 this morning. Everything went well and she is doing good! She is still a little sleepy from the anesthesia. They are giving her Fentanil for the pain, but she should only need it for a couple of days. The trach tube is a little smaller than the other tube she had in so there is quite a big leak, which means there is still air passing her vocal cords so we can hear her breathing and will be able to hear her cry! Not that we want her to cry but I will be nice to hear it! It takes about 5 days for the track to get established and like I said she won't be taken out of bed for those 5 days. Then probably on Wed. they will come change it. It has to be changed every so often (not sure how often though). Then probably Friday we will start to learn how to take care of it. We have to learn how to clean it, change it, and suction it. And what to do in an emergency if there happened to be one. There is a respiratory therapist whose job it is to teach families this stuff! Hopefully it won't be too hard to learn!

Now she can work on her eating! They are going to start her back on 2 cc/hr tonight at 6 and then if she does good with that they will put her back at 4 cc/hr in the morning. Then Sunday they will go back to increasing it every day if she is doing good. I'm not quite sure when they will be able to try bottle feeding. Hopefully it is soon though!

I asked the other day if we will be able to put her in a swing and they are not sure about it. They said that from the trach standpoint she would be fine in a swing, but they are not sure about her belly and if she will tolerate it. But I think they will probably let us at least try it when she is healed from surgery.

Tomorrow is the day...

Tomorrow Fiona is getting her trach surgery. We still don't know a time because the schedule hasn't come out yet. It would be really nice to know! So just say some extra prayers for her tomorrow.

As for today, she is doing really good. Her feeds are up to 4 cc/hr and she is doing really good with it. Now that things have started moving through we are hoping that they can keep increasing it without any problems. Even though we are being very optimistic we probably should expect some setbacks. Like I said in the last post, they will make her NPO at midnight tonight and then HOPEFULLY be able to restart them soon after her surgery. It just depends on how she is handling everything. They might just have to start back at maybe 2 and if she does good then put it back at 4... no one is really sure. She weighs about 5 lbs. 13 oz. now! She is now bigger than my niece Adriana when she was born (she was 5 lbs. 9 oz.!!) She is starting to get some fat rolls, haha! YAY for fat rolls!! She has been staying awake more lately. Today she was up from 5 til 9!

I will post sometime tomorrow after her surgery and post a picture of her pretty little face without all that tape on it!

2 Months!!

On one hand we can't believe it has been 2 months already! On the other hand it feels like it has been FOREVER...

More Pictures!!

I love my monkey!!

I don't know if you can tell from this picture, but one of her nurses cut off the side of the binky so it would fit with the tube in her mouth! The tube used to be on the other side of her mouth so the binky has to be upside down now!

Keep the good news coming!

Well we got some good news today! One of our biggest concerns was whether or not Fiona's lungs would ever be strong enough to function on their own... and the Pulmonoligist said DEFINITELY!!! It might not be as soon as we had hoped for, but eventually they will get it together and be able to work on their own without the ventilator! I'm not sure if most of you know that she will still be on the ventilator when she gets the trach. And as for the trach, she is getting it for sure. She might actually be getting it tomorrow! First they said Friday and then when they came back to the room to get our consent, they said tomorrow! But it does depend on if there are any emergencies or anything like that. Tom and I kind of have a mix of emotions right now. We certainly never imagined her having to get a trach and it isn't by any means what we WANT, but now that we know she is getting it we are kind of excited to just move on to the next step. We are excited that she will be able to move around more without having to worry about pulling the tube out, that she won't have to get mad at that stupid tube in her mouth anymore, that she will be able to keep the binky in her mouth by herself, that we will eventually be able to bottle feed her, and most importantly that we will be able to bring her home!

She got a blood transfusion today, just because her hemoglobin was a little low this morning. As for her feeds, she is doing good at 2 cc/hr today. But since she is probably going to get her trach tomorrow they have to make her NPO (something latin for "nothing by mouth") at midnight. We're not sure how long they will have to keep it off, but then she has to start all over again at 0.5 cc/hr and work her way back up. And she pooped all by herself twice today, yay! She is a stinky little one. She has had some awful gas for the past few days! Her bed is so tall and I am so short that when I have to hold her down to do the dressing change my face is right by her butt and she must have thought it would be funny to fart in my face the other night!

Like I said, we're not sure what time she will be getting her surgery tomorrow, but I will be sure to post sometime afterwards. Just say some extra prayers for her tomorrow that everything goes well!

So Cute!

Beware: Pictures of the O!

So you can see the skin is nicely growing up the O. It is about 1/2 way now. The green parts are the granular tissue and underneath that you can see the new skin forming. I think it's amazing what our bodies can do (even when they screw up!) No one is exactly sure what the litte purple parts are. The surgeons think it might be poop working its way through there. Tom thinks they are bruises which would make sense since the skin is so new and fragile. But either way it doesn't seem to bother her so that's good!

Tom is holding her down so I can change the dressing on it. We do that entirely ourselves now at 8 pm and the nurse does it at 8 am (because we are not up that early). She actually likes being held like that most of the time! After we are done changing the dressing then we give her a bath and change her bed and clothes. (Tom gave her a bath and changed her diaper for the first time the other night. It was so cute because he had to ask "how exactly" he was supposed to wipe her!) And then we usually hold her for awhile!

In higher spirits!

Tom and I were pretty down in the dumps last week after talking to one of the surgeons. She was just not the most positive person in the world. They all have their ways of telling us stuff, but she was just not very supportive I guess. To quote my friend Sarah (whose O baby Aidan is now 3!) - "Try not to listen to that one doctor. Unfortunately, too many are unaware of the reality, that more and more O babies are surviving, that it is not a death sentence. It's really frustrating that some doctors are still so in the dark about it. But the truth is that parents like us need to advocate, and prove that our children are survivors. So just hang in there, and keep on teaching them that!"

But Fiona is doing good today (and has been for the past few days). They weaned her pressure support from 12 to 10. They also increased her feeds to 1.5 cc/hr. She hasn't pooped in about 4 days so we are really hoping for some poop soon, haha! We're still not sure what time our meeting is tomorrow. The ENT (ears, nose, and throat) doctors are supposed to be there too. Even though she has been doing better the past few days everyone is still pretty sure she is going to need a trach. And I guess they are thinking maybe as early as some time this week. They gave me some info on getting her first round of immunizations since she is coming up on 2 months already! But her nurse today said they want to hold off on them until they at least know what is going on with the trach because if she did have some kind of reaction they would need to know whether it was from one of the shots or from her surgery. We did find out that after she gets the trach she won't be able to be out of bed for 5 days :( They won't even be able to weigh her during that time. But the good news is that after those 5 days she will be able to be much wigglier (haha) than she already is. She will be able to move her head around more. And also the Occupational Therapists will be able to start working with her. Hopefully it will get us on the right track to getting home! I will post sometime tomorrow after our meeting.

New Pictures!!

She was finally awake when we held her!

Tom being a dork!

First Post!!

At some point I will have to add everything I have been writing in a notebook since the day she was born, but for now I will just start with today and go from there! This will just be much easier than trying to cram everything in my Facebook status!

As I am writing I might use words and terms that most people aren't familiar with so I will try to explain them as I go.

Fiona has been pretty good today. She is at least staying stable for now. A lot of people have been asking me what they are going to do about her belly. As of right now the surgery on her belly is not even in the picture. They are much more worried about her lungs at this point. Obviously her belly is an issue, but it is not causing any problems at this point. It is nicely growing skin (which it is supposed to do). Eventually the skin will cover the whole thing. It is about 3/4 of the way up right now. The rest is covered with granular tissue which is what is needed to grow skin.

I will try to explain her vent settings. Right now she is on 36 bpm (breaths per minute/ how many breaths the ventilator is giving her). She also breaths on average 20-30 breaths per minute on her own. So her total respiratory rate is usually between 50 and 60. She is also on something called pressure support. I found this nicely described in another blog I have been reading. Our lungs are kind of like balloons. When the balloon is already filled up a bit, it is easier to put more air into it than when it is completely deflated. So what the pressure support does is keeps a little air in her lungs so she doesn't have to work so hard to take her own breaths. Each time they have tried to wean her off of the pressure support she does not like it at all. That is what has caused some of the setbacks. We are meeting with the Pulmonologists (lung doctors) on Tuesday to see if they can tell us anything about her lungs. The thing that sucks is that the ventilator is a viscious cycle. She needs to be on these high settings to keep her alive, but the longer she is on it, the more damage it does. Being on a ventilator long term causes CLD (chronic lung disease). Apparently your lungs keep growing until you are about 5, so her lungs will constatly be trying to grow AND heal themselves at the same time. Getting the trach will not really help or hinder the situation in anyway. It is just a more secure/long term solution than having the tube shoved down her throat. She is getting to the point that she realizes it is in there and gets mad at it. She has already pulled it out on her own once and we don't want that to happen again! She is a feisty one!

As for her feeds... she is currently getting 1 cc (or ml)/hr. A cc and a ml are the same thing. So she gets 24 cc's in a day, which is not even quite an ounce. She is doing ok digesting that, it just takes her longer than it would a normal baby. The rest of her nutrition comes from the TPN. It has all her vitamins, minerals, fats and whatever else she needs. They will lower that as they increase the amount of breast milk she gets. She would need to be taking about 50 cc's per feeding (every 3 hours) to be considered at full feeds. Once she gets the trach we should be able to work on bottle feeding (HOPEFULLY!) It is a good sign that she likes to suck on a binky so she doesn't lose that sucking reflex.

Well hopefully that gives everyone an idea of what is going on. I will try to update at least every other day (since I have to go to the library to use the computer) and post some pictures and videos! Feel free to leave comments and ask questions. I will try my best to answer them!