Pictures

Playing with daddy in her new home!

We were testing out Fiona's "belly device" in the carseat. Her OT made it out of cast material and added padding on the inside and straps to go around her back. It works really well! Thanks Lauren!!

So Close!!

A lot has happened since the last time I posted!! I haven't had much time and still don't so I am just going to give a quick update! We got to TIC on Wednesday and Fiona is doing great! All of the nurses love her just like they did at Children's! And they are all so impressed by what Tom and I already knew how to do. We kept telling everyone that we were going to be out of there in a week and everyone would kind of give us this look like, "yeah right!" Well wouldn't you know that they are planning to have us out of there on Wednesday, which is exactly a week! There is a whole list of stuff that Tom and I have to get checked off that they have seen us do and that we are comfortable doing such as changing her trach, changing the trach ties, suctioning, etc. We were pretty much comfortable with all of that stuff while she was still at Children's. We also had to get training on all of her home equipment: ventilator, battery, suction machine, feeding pump, pulse ox (measures the oxygen in her blood and heart rate). Anyway... tonight will be our first night staying at TIC with her. We didn't know that someone has to be AWAKE with her 24/7! So one of us will have to stay up all night with her or take shifts while the other one sleeps. At home we will actually have a nurse there over night so we can both sleep. We are so excited to be going home soon and can't wait to get there. She has been through so much in these past 3 months and still has a long road ahead of her but she is a tough little girl! Hopefully we get to have her at home for about a year before we have to take her back to Children's for her surgery. Thank you to everyone for your thoughts and prayers and gifts. Don't stop the prayers, we will still be needing them! Hope to see most of you soon :)

She's getting so big!

I think this picture it so funny! She's thinking "Where did that big fuzzy thing that was on your chin go Daddy?!"

Of course...

So of course after I had written how good Fiona was doing something happened. Nothing major and she is still doing good. We noticed that Fiona had been getting fussy a lot more than normal and that she was sleeping a lot. We thought that something was wrong, but we just weren't sure what. For about a week she had been having a lot of trouble pooping. Almost every time she went she got VERY mad and her heart rate and oxygen would drop and then once she went she would be fine. It would just take her a little bit to recover from that and she would breathe really hard... and we just thought it was because she was having so much trouble going. So we asked if there was anything they could give her to help. They said that since she was going there was nothing they could do about it. It was just because she had to work so hard because she doesn't really have abdominal muscles where they should be to help her push so it takes a lot out of her. So we just said ok and dealt with it because there was nothing else for us to do. Most of the time these little episodes would last 1/2 an hour to and hour. Well Tuesday night she was having one of these episodes but it lasted 4 hours and we just could not get her to calm down. Usually her oxygen is around 30-40% and that night we had it up to 70% and her oxygen level just kept dropping. So finally the nurse called the respiratory therapist and had him come take a look at her. Anyway, it turns out that the problem was the ventilator. I won't go into the specifics, but it wasn't giving her the pressure support that she needed when she was taking breaths on her own. So the poor thing was go tired and mad because she was working so hard to breathe. So they put her back on the hospital ventilator and we could tell immediately that there was a difference. She was so much happier and her breathing was back to normal. They ordered us a new home vent which is an older version. The one we had was the newest one and most of them hadn't even seen it yet! They are planning to get her onto the new one on Monday. Usually a baby has to be on the vent for a week before they can go to TIC, but since she has been on all the same settings and is stable they are pretty sure that we will be able to go there on Wednesday! YAY!
Tom and I are at home right now. We are trying to get everything ready for her to come home because once we go to TIC we won't be coming home til we bring her home! Tom put up a railing upstairs and a handrail going up the steps. Toni, Boo, and I cleaned and rearranged the bedroom and living room. We had to set her crib up in our bedroom because she will be sleeping in there for awhile. Probably at least until she is off the ventilator. We had to make sure there was enough room for everything and we have a pretty small bedroom! I guess the home care company that we are getting all of her equipment from has to come inspect our house and make sure there is adequate room for everything and that all of the electrical stuff is ok since we have so much stuff that will need plugged in. We had a lot to get done and still didn't get it all done so Toni and Boo and my mom and dad are going to come do the rest. I don't know what we would do without them!

Are we done yet?!

So I haven't written anything about us leaving because we still aren't sure of the plan, but I guess I will share what is going on. We have known for awhile now that we were going to TIC, we just didn't know when. A few things had to happen first -stable with feedings and stable on the vent mostly. Well now that those things have happened we just want to get out of here! First they told us that we were going last week. Well someone got something mixed up and obviously we didn't go last week. So then they told us "sometime" this week. Well it is Monday and we still don't have a day. Apparently TIC only takes so many babies on ventilators and one of them is supposed to be leaving there this week and Fiona will be taking that spot. I guess they just don't know when that will be. It is very frustrating though just sitting around not knowing when we are leaving. The nurse just told us that they even said in rounds this morning that they are not really doing anything new for her, she is stable and ready to go and now we just have to wait for TIC to be ready I guess.

She is doing better with the bottle now. She is taking about 20 cc on average at each feeding. She gulps it down fast for the first few minutes and then gets too tired and stops! Or gets sloppy and it drips out the sides of her mouth. She graduated from the Preemie diapers to size 1 today!! Partly because she kept peeing out of the P's and partly because her little legs are getting so chubby that the diapers were getting tight on them. Oh and I keep forgetting to write her weight! She is up to 6 lbs. 15 oz!! I can't believe she weighs almost 7 lbs already!

I should have gotten her whole body because she had a cute little Valentine's Day outfit on! The shirt had little heart pockets and the pants had pink and read hearts on them. So cute!

Busy Week!

Fiona had a few tests done this week. Monday she had an echocardiogram to check her heart. She does have 2 VSD's. "A ventricular septal defect (VSD) is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. Septal defects are sometimes called a “hole” in the heart. It’s the most common congenital heart defect in the newborn; it’s less common in older children and adults because some VSDs close on their own." I guess one hole is very small and one is moderate size but neither of them are causing a problem at this point. There is still a chance that they could close on their own. If they don't and they are still not causing a problem they will be left alone. If they start to cause a problem then they will have to be fixed at some point.

She also had a head ultrasound on Monday. They found a Grade 1 bleed, but apparently this isn't causing any problems either. Here is a little explanation of that. "...These blood vessels are especially fragile in premature infants. Babies born more than eight weeks early are most likely to have this bleeding. Some fragile blood vessels surround the ventricles of the brain, cavities in the brain though which cerebrospinal fluid (CSF) flows. The blood vessels are underdeveloped in the very young infant. They start getting stronger after thirty-two weeks of gestation. These blood vessels are very sensitive to changes in blood flow. If the blood flow changes, the blood vessels break down and start bleeding. If the bleeding is slight, the blood remains around the blood vessels. If the bleeding gets worse, the blood breaks into the ventricles. In the worst cases of bleeding, the blood may leak into the brain tissue. The hemorrhages are graded from 1 to 4 according to the severity of the bleeding..." Our nurse practitioner also said that sometimes they can over analyze things so it might not even be an issue at all.

On Tuesday she had a VCUG (Voiding Cysto-Urethrogram) to check on her kidney reflux. I'm not sure that I ever mentioned she had that. What pretty much happens is that her urine backs up from her bladder into her ureters and back into her kidneys. The doctors said this could have something to do with her O because it happens when the ureters don't grow into the bladder at the right angle. And since pretty much nothing is in the right spot it makes sense. They also use grades for this, I think from 1-6. She has grade 3 in one kidney and grade 4 in the other. It could possibly get better on its own. If it doesn't she will most likely have to get surgery to fix it at some point. She will probably have to be on Amoxicillin for the rest of her life.

They started her on another medicine today, too, called Actigall. It is to prevent gall stones. I'm not exactly sure how all of this goes together, but her billirubin level is a little high and has been going up for the past few weeks which I guess can cause gall stones? So this is preventative. She also had her Broviac taken out today, yay! She is doing good with her feeding. She has been taking on average about 10 cc by mouth each feeding and then gets the rest in her NG tube. She did awesome the other day and took 44! Tom and I are now aloud to feed her. She does have a 15 minute time limit because she has to work so hard anything beyond that would be making her use up too many calories.

The surgeons looked at her O today and said that everything looks good. We are hoping the doctors can make us some sort of support for her to use in the car seat when we are ready to go home! Which will hopefully be soon so keep your fingers crossed! :)

Big Eyes!

This is the video from the night that we sat her up. Tom and the nurse were changing her trach ties. I couldn't put it on from the hospital for some reason!

SORRY!

Sorry again for the lack of blogging! We have had a pretty busy week!

Wednesday they started Fiona on "bolus" feeds, meaning that instead of doing it continuous for 24 hrs a day, they do it in a certain amount of time. Most babies take about 1/2 an hour to drink their bottle and eat about every 3 hours. There is no way that they could go right from continuous to 1/2 an hour because her little belly wouldn't be able to hold that much, so they gradually decrease the time it takes to give her the milk. She is getting 18 cc/hr (which they increased from 17 to give her more calories), so if she was eating every 3 hrs she would be getting 54 cc. They decided to start out giving it to her over 2 hrs. They do her feedings at 3,6,9, and 12. So they would feed her from 3-5 then give her an hour break, then feed her from 6-8 and give an hour break, etc. She did good with the first one, but then threw up twice during the second time so they had to go back to doing it continuous. She was on continuous all of Thursday and then back to bolus at 2 1/2 hrs on Friday. She did good with the 2 1/2 hrs, so Saturday they went down to 2 hrs, and today down to 1 1/2 hrs (with the goal being 1/2 an hr). So she is getting 54 cc at a feeding, which is a little less than 2 oz. I know it's kind of confusing!

Wednesday they also starting trying to give her a bottle!! The first time that the Occupational Therapist came up Fiona sucked a little out of the bottle but then just spit it back out. The secong time that day she actually got about 1 cc down! Thurday and Friday she wanted nothing to do with the bottle. On Friday she did suck about 2 cc out of the bottle, but then just left it sit in her mouth and wouldn't swallow it so we had to suction it back out! She does pretty good with the sucking, it's the swallowing that she doesn't quite get yet! It might be a long process.

On Thursday they put her on the home ventilator. Pretty much the same thing she was on, it's just the one we will be bringing home with us and not as expensive as the one in the hospital haha! Apparently the one in the hospital costs about $50,000 and the one we are bringing home costs $10,000. Still a pretty expensive piece of equipment to have in your house! They had to do a little adjusting a few times just to get her at the right settings because even though it is doing the same thing, it can be a little different. They told us not to be surprised if she didn't like it and they had to put her back on the hospital one and try again, but she did really well with it and is still on it!

We are going to have so much equipment in our house! Not only will we have the ventilator (and another one for back up and transport), but we will also have an oxygen machine, oxygen tanks (for transport), and a suction machine. And we will also have extras of all the tubing and all of her trach supplies. Zues (our dog) is probably going to hate us when we come home!

This was her second attempt with the bottle. Part of the problem is that she is always sleeping when OT comes to work with her!

Thank you!

We just want to thank everyone for the baby shower gifts and other gifts that have been given to us over the past couple months. I am in the process of doing the Thank You notes, it is just hard to do in between everything else! So we just want everyone to know that we are very thankful and appreciate everything!

Getting closer to home!

Well as most of you saw from Facebook, I changed the whole trach yesterday (with the assistance of our teacher!) But today Tom and I did it ourselves while Chuck watched and gave a few suggestions! Tom was the "do-er" and I was the "helper". I'm sure it will get a little easier every day, but I have never been so nervous in my life! And my face gets sooo red when I am nervous!

The home ventilator came today! It got all checked out and will be hooked up tomorrow. It is actually the one that we will be taking home with us. Chuck got us all excited saying that TIC requires that a child be on the ventilator for 7 days without and changes so Fiona could possibly be out of the hospital by the end of next week! Well as soon as he got done telling us this one of the doctors came in and said there was some changing of the plans. They want OT (and maybe the speech therapist?) to come do their assessment to see if she is ready to bottle feed and get her doing that before they consider sending us to TIC. Hopefully she catches on REALLY FAST and we can get out of here! They previously told us that they don't send babies home with feeding tubes so she would need to be bottle feeding before we could go home. But today it sounded like if she didn't get the whole bottle feeding thing that they would have to consider sending her home with the feeding tube. I don't know if they just like to change their minds a lot or if Tom and I misunderstood?! Usually if a baby isn't able to bottle feed, they put in a G-tube, which goes directly into the stomach. But because her stomach is in the O, she is not a canidate for a G-tube. So she really just needs to take the bottle and like it, haha!

She is doing pretty good with getting in and out of bed. Most of the nurses are now comfortable with Tom and I getting her in and out by ourselves. She is doing really good with tolerating being on her back. She can't be there for huge amounts of time, but she is definitely making progress. We would like to get that head reshaped, haha!

Look at those eyes!

We had to sit her up to change her trach ties and she looked so shocked/scared! She did such a good job though, everyone is impressed by how good she does during the whole process!

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.