Appointment Update and O Pictures

She was laying on the floor watching Ellen, which we watch every day :)

Last Thursday we had a trip to Pittsburgh. First we saw Neurosurgery. The appointment went great! They said that nothing is wrong and they don't ever need to see her again, yay! The doctor actually said, "Congratulations, you don't need a Neurosurgeon! I don't get to tell many people that!" They were mostly checking to make sure she didn't have excess fluid and she doesn't. Her head is a little big, but is in the 50-75% range which she said is still normal. We are so glad that we can cross that one off our list!

While we were waiting for the doctor to come in she was put on her new vent. The main reason we decided to change ventilators is because of the battery. The old one had a 15 lb battery that we had to lug around with us if there was no place to plug it in. This one had an internal battery and a tiny little detatchable battery. It will be so much easier! And the other reason is because the old one had 2 hoses and this one only has 1. Less for Fiona to play with! (In case anyone would like to know we changed from the LTV 1150 to the Trilogy 200.) She is doing great on it and yesterday we changed her Pressure Control from 12 to 10. She has been doing awesome with her "sprints" off of the vent. Today she was off for 5 hours and 45 minutes twice! She is chugging right along and we have high hopes that it won't be too much longer until she is off that dang thing!

Those were supposed to be the only 2 appointments we had, but while we were in the waiting room I called her surgeon to see if he could fit her in. Her O has had the most awful smell to it. Not a sweet smell like before. It was just a BAD smell. He is so awesome and got us in right away. He had to "debreed" her O (he had to take off all of the dead, black skin that was causing the smell). I couldn't even watch. It wasn't hurting her because the skin is dead and underneath it is just the Gortex patch. She was just really mad because the nurse was holding her legs down. Tom thought it was the coolest thing ever though, haha! Now it looks and smells much better!



CAUTION: O PICTURES BELOW!!




Before the debreeding:



After the debreeding:

It is so hard to get a good picture of it now because she moves around so much! But you get the idea!

P.S.: I can't believe she will be 1 in 4 days! Be on the lookout for a major picture post, haha!

It Finally Happened...

The very thing we have been trying SO hard to avoid... Fiona pulled her trach out yesterday! I don't know what we are going to do with that little stinker! She actually un-velcroed one side of the ties and then pulled on it enough that when her nurse went to take her onesie off, it came out! Luckily she has been doing so well with her breathing that her sats didn't drop too far before we were able to put a new one in. She has been doing amazing being off of the vent. We are increasing her time by 15 mins twice a day. So today we were at 4 hours twice a day. Her sats don't even drop when it is time to go back on. She usually makes it to the time she is supposed to. Every once in awhile we have to put her back on sooner because she starts coughing alot. When she is on the vent she is also on a humidifier, so when she is off she gets really dry. I bought a humidifier to put in the living room and today it seemed to help a little. But alot of times she coughs so hard that she ends up throwing up. And we DO NOT need her throwing up! We have to go to her Pedi once a week for weights checks now and last week she hadn't gained any weight since the week before. We just don't know what to do because we are getting her to each as much as possible. We even started giving her some Pediasure which has even more calories than her formula and it's still not helping. She will be a year old in 11 days (which I can't believe!) and only weighs 12 lbs 12 oz!
Thursday we go to Pittsburgh for an appointment with Neuro Surgery. I think I mentioned that in the last post but wasn't sure when we were going yet. I won't go into detail about it, just keep her in your prayers and hope for good news! I will update and let you all know how it went.

Happy Halloween!

Lots To Catch Up On!

This was during her 3 hour sprint off the vent. Laying in mommy and daddy's bed!

Sucking on her baby doll's binky, haha!

This is Tom's hat that he wore home from the hospital when he was born!

I know, I am being a blog slacker again, haha! But Fiona is doing so good!

We had a few appointments, so I will update you on those. On the 14th we saw Cardiology and her surgeon. The Cardiologist (Dr. Webber) loves her (just like everyone else does!). First she got an EKG done and thought it would be funny to try to pull all of the wires off the whole time! The doctor came in to talk to us and decided she should also get an Echo done. She was not very happy about getting the Echo. Tom had to pretty much hold her down, poor thing. The doctor came back in to talk to us and said that quickly looking at the pictures it looks like her ASD (one of the holes) is either gone or just a tiny pin hole, yay! But the other hole, the VSD, is still there. It is a "moderate" size (the holes will either stay the same or get smaller, they can never get bigger). He said he thinks her body is still trying to close it, but it isn't closing as fast as it would in other babies because she isn't growing as fast. He is still confident that it will close with time.

As we were waiting to talk to Dr. Webber, Dr. Burns came in to look at her O because we had been at Cardiology longer than expected and he was late for a meeting! So he came to find her. He said everything looks good and he is pleased with how everything is going. I then told him that she had a fever the night before and that morning before we left. He said the very thing we DID NOT want to hear- that he wanted to admit her. Then after talking about it for a few minutes he decided that she should get a chest x-ray and if that looked good we could go home. She is teething and we all hoped that the teeth were the reason for the fevers. He just didn't want to miss something if she really was sick. Well obviously she didn't get admitted and we came home. That night when we got home she had a fever of 101.5, but it went down with some Tylenol and she hasn't had one since. And she got a new tooth! One of the top incisors. She is going to have fangs for Halloween, haha!

We had more appointments on the 19th. First we saw Pulmonology and ENT (they do a joint airway clinic). Dr. Aujla (her pulmonologist) is also very pleased with her progress. Everyone was kind of worried about how the surgery would affect her lungs, but it has actually seemed to help her breathing! She said she can tell that she is taking deeper breaths than she used to. She turned her pressure control on her vent down to 14 (from 18). The pressure control is the pressure that it takes for the ventilator to giver her a breath. ENT did a scope and said everything looks great.

After that we saw Dr. Burns again. He just wanted to check up on her and make sure she wasn't still having fevers or any other symptoms.

Then she had to get a head ultrasound. I have always thought her head was kind of funny shaped, but we have just been blaming it on the fact that she layed in a bed for 3 1/2 months. He was concerned about the overall circumference of her head. Well I just got the results today. Her IVH (brain bleed that is very common in preemies) has resolved itself! But her ventricles are still enlarged. I won't go into detail about what this usually means because we are hoping for the best. And Dr. Burns said that he doesn't think it is anything to be concerned about, but is still referring us to Neuro Surgery for a consultation. I will find out tomorrow when we have to go to that appointment.

So back to the ventilator. We had to get a blood gas on Friday to check her CO2 since we turned her pressure down. Well it was one of the best ones she has ever had! So the dr. decided to do some more weaning. We turned her pressure control and breaths per minute both down to 12! We are making some progress! We are also supposed to be doing what are called "sprints" where we take her off of the vent for a few minutes here and there. The longest she had ever been off was 10 minutes. So our goal was to get her up to 15 minutes a few times a day. On Saturday morning we decided to try it. I didn't think there was any way we would get to 15 minutes. Well she ended up being off for 3 HOURS!! And she did great with it- no nostril flaring or breathing hard or anything! She started coughing alot and that's what made me put the vent back on. On Sunday she was off for 2 hours, but broken up into a few different times. So I called the dr. yesterday and she thinks it might have been a little too much, too fast. So we are supposed to increase her time off by 15 minutes each day. The greatest Christmas present would be to have her off of the vent during the day! Keep your fingers crossed!

I can't believe she is 11 months old and that her 1st birthday is coming so fast! I am going to try to make a tutu for her to wear for her big day! I am having fun with all the Princess decorations and stuff!

Pseudomonas?

Last week we noticed this odd strangely sweet smell coming from Fiona's O when we were doing dressing changes. By the end of the week it was so bad that you could smell it through the wrapping and her clothes. So Thursday I called her surgeons office and talked to the nurse. I think she thought I was crazy! But had to talk to Dr. Burns and then call me back. Well Friday morning I still hadn't heard from them, so I called our Pediatrician. I think that nurse also thought I was crazy and just told me to get ahold of someone in Pittsburgh. Thanks for the help. I called back to Dr. Burns' office and left another message. They finally called me back about 5 pm on Friday. The nurse explained that she has Pseudomonas bacteria on her O. The bacteria just being there is different from it being infected, but if untreated could turn into an infection. So the treatment is to put an acetic acid solution on it for 15 minutes 4 times a day. This is not as easy as it sounds! We were so used to only doing her dressing change once a day before surgery. Then after surgery we went to doing it twice a day because it was oozing and bleeding and we had to keep it dry. Well now we have to do it 4 times a day along with the acid treatment. Fiona is not a fan of the dressing changes! It doesn't seem to hurt her in any way, but we have to hold her arms and legs down so she doesn't get them anywhere near her O. I just hate that the poor thing can't have a schedule of her own. Like right now she is sleeping, but still needs her O done one more time and also needs her breathing treatment and suctioned. She doesn't ever just get to sleep when she wants to between those things and therapies. ugh!

Other than the Pseudomonas, she is doing really well! She is pretty much back to her normal self, laughing and smiling all the time. She started laughing when you tickle her. We finally put her in her walker yesterday for the first time since surgery and I think she missed it! We were worried about how her O was going to fit. It is much smaller now, but sticks straight out in front. Whereas before it flopped off to the side in her walker and jumper. We haven't tried the jumper yet, but she fits nicely in the walker. She has also started clapping and it is so cute!

We Are Home!! (And O pictures)

WE ARE HOME!! YAY! We got to come home yesterday. We got home around 7:30 pm. We are so glad to be home! And Fiona is doing much better today. She is back to smiling a lot! Not QUITE back to her normal self, but I don't blame her, I'm sure her muscles still hurt.

Ok, so I decided to put up all of the picture that I have of her O from birth until now. I know a lot of people are curious as to what it looks like. And I also hope it might help with people doing research on Omphaloceles and the "paint and wait" method. I could not find much information, let alone real stories about Omphaloceles and especially the "paint and wait" method. Hopefully these picture will help parents see what the progression of skin will look like and how long it will take. Please don't go any further if you are grossed out by stuff like this!




CAUTION: O PICTURES BELOW!!!

These 2 were taken 3 days after she was born. You can still see through the sack. The darker parts are the intestines and I think the lighter part is her liver.

This one was taken at about 5 weeks. (they were putting the wound gel on it)

These 2 were taken at about 1 month.

These two at 1 1/2 months.

These two at a little over 2 months.

These three at about 3 months.

These two at about 7 1/2 months.

This was the day before her surgery. We were comparing the size to her monkey!

This was 2 days after surgery.

And this was when we got home last night (4 days post surgery). Again comparing the size to her monkey! You can see how the base is much wider now.

The skin is black because it's blood supply was cut off. It wasn't like normal skin that has it's own blood supply, so when it was seperated from the organs it lost all of it's blood. It will now probably peel off and the O will have to grow new skin again like it did at the beginning.

Coming Back to Life!

They took the NG tube out about 4 pm on Friday, but still wanted to wait a little longer to feed her. She got to eat for the first time yesterday morning! She took about 30 cc of Pedialyte for the nurse and then about 10 more for me. Since she did so well with that they said to go ahead and give her some formula. It always takes forever for them to bring up her formula from the "Formula Room" because they have to mix it so we just used what I had in the diaper bag. I have never seen her so excited to see a bottle! She ended up taking about 80 cc from that bottle and then eating 2 more times yesterday and kept it all down! At home we had been having issues with throwing up for awhile but *knock on wood* she hasn't thrown up here yet! It was always so hard to get her to burp and if you didn't get her to then usually after a couple hours she would burp, gag, and throw up. Well yesterday she was burping like a champ with no effort at all! What a thing to be proud of, haha! They shut her nerve blocker off at around 11am yesterday and she was doing really well tolerating the pain so they took it out around 4pm. After that she was kind of fussy all day and would cry every time you tried to move her or she would cough. So we decided to try just Tylenol first to see if that would help. She was still very fussy and uncomfortable and was crying a lot while I was holding her. I put her back in bed to get her ready for bath time and we turned on the lights and saw that her whole left side was bruised. Well that was obviously why the poor thing was in so much pain. So we washed her up and the nurse gave her some Morphine before we attempted to change her belly dressing. It worked so fast that you could tell she immediately felt better. It was so weird- I was actually queasy just thinking about how much pain she was in because of how bad the bruise looked. And I'm sure looking at her O didn't help me much. So I made Tom and the nurse change the belly dressing.
The skin is starting to peel off of it and it is oozing and bleeding, yuck. And for some reason I have an issue with stitches. Anyway, after her bath, belly dressing, trach ties, and suctioning, I fed her and rocked her to sleep and she seemed much more comfortable.

This morning we came in and she was sleeping, but needed fed, so I fed her and played with her a little bit and she seemed much better than she was last night. I even got a couple little smiles out of her! She is slowly coming back to life! The attending doctor came in while I was feeding her and said, "So I hear she is going home!" and we were like, "WHAT?!". Well at this point we are still not sure whether we are going home today or not. It is up to the surgeons when she is allowed to leave. We are trying to get some things in order and there is alot to do before she leaves. We have to know exactly what we are supposed to do with her O (which I think is what we were doing before it was all skin the first time), but we aren't sure if we are allowed to give her a bath and get it wet. She also needs her central line taken out. We need to know if they are sending her home with pain medicine if needed. And she usually eats Similac Advance, but because of the recall she is eating Enfamil right now, so we need to know what to do once we get home (how to mix it since she is on higher calories) because our stuff at home might be under the recall too. It would be awesome if we could go home today though! Hopefully I can get some pictures posted once we get home.

She is Starving!

Poor little thing still hasn't gotten to eat yet. They have to wait until what they are sucking out of her belly turns clear. It is close, so hopefully sometime today she will get to eat. I just hate seeing her so mad. I have never seen her mad for so long. I haven't seen a smile out of her in 2 days. I also haven't held her since before she went into surgery which is killing me. I usually rock her to sleep and hold her and play with her all day. She doesn't even want to be moved right now. She gets mad when you even try to move her head. She still has the nerve blocker in. They said they want to leave it in one more day and then will probably take it out tomorrow. She has been doing really good with that and hasn't needed any of the other pain medicine she is allowed to have. Yesterday she wasn't peeing very good so they gave her some extra fluids to help. They also gave her a blood transfusion because her count was low. It definitely helped her color, she was getting so pale. They are very happy that they were able to put her vent settings back to where they were before surgery instead of having to increase them! I just can't wait to be back home and get things back to "normal". And then do this all over again in 6 months and repeat 3 more times. Once we get home I would like to post pictures of her O before and after so be on the lookout for those if you don't want to see them!

Surgery Update

Yesterday we had to be at the hospital at 9:30, so we left our house around 6:45 am. Thankfully Fiona slept the whole way there. When we got there we were taken right back to the PACU (post-anesthesia care unit) because she is on a vent. They weighed her (she is 14 lbs. 9 oz.) and did all the paper work, etc. She was being her silly little self rolling around on the bed and trying to eat everything. Well we have no idea why we had to be there at 9:30 because they didn't come get her until 12! Then Tom and I and my parents went to the cafeteria and got something to eat and then up to the waiting room. Around 1:45 the nurse liason came out to talk to us and we thought she was going to tell us that she was in recovery- oh no, she wasn't, they had just started the surgery! They had trouble finding a vein for an IV so they had to place a central line before they started. So finally at about 4, Dr. Burns came out to talk to us. The surgery went great! He did her hernia first which was a pretty simple procedure. OH, and what we thought was intestine protruding through the hernia (that we could feel) was actually her ovary! Then he explained the surgery on her O. Ok, bear with me here, it is kind of confusing and a little graphic! First he made a cut down the whole center of the O (in the skin) and opened it up. He said most of his time was spent seperating the skin from the organs because they had become fused together. Then he widened the opening because it was so small he wanted it to be a little easier to put things back in. We also learned that there was more in her O than we thought. It contained her liver (almost the entire thing), small intestine, and stomach, and we knew all of those. But it also contained her spleen (we weren't sure about that one), gallbladder, and small part of her appendix. He put back what he could, not really sure what is where now. Then he attached a Gortex Patch to the opening and up around the organs. Then put the skin back over top of the patch. He cut off about 1/2 of the skin that was there. As he was talking to us they took her up to the PICU to recover and we got to see her at about 4:30. She was still sleepy and slowly woke up over the next couple hours. We couldn't believe how small her O was! It is about 1/4 of the size that it was! All evening she was kind of in and out of it. She would wake up and freak out because she didn't know where she was or what was going on and then would fall right back to sleep. She did really well over night.

Before surgery they put in a nerve blocker (kind of like an epidural) to manage her pain. This has been working really well for her and she hasn't needed much of anything else for pain. Today she is still kind of in a out of it, but awake more than yesterday. She is just really mad when she is awake because she is so hungry. She is on IV fluids like she was in the NICU and has an NG tube in that is suctioning out her stomach. We are waiting for the surgeons to round to give the OK to take out the NG tube and start feeding her. She is so hungry that she has been sucking the water off of a mouth swab and then gets mad when it is gone! She pretty much has to be eating ok for her to go home. Her breathing seems ok, at least no worse! They had to turn her BPM up to 18 and oxygen to 30% after surgery, which is normal, but today they are back to 14 and room air.

Over all she is doing awesome and the nurses all love her (like normal)! We are expecting to be here for 3 or 4 days so hopefully we will be home Saturday or Sunday. I will keep everyone updated!

Surgery

Just wanted to update and let everyone know that we have to be at the hospital at 9:30 am for Fiona's surgery. They will probably take her into surgery around 10 or a little after. They told us about 2 to 2 1/2 hours. Keep Fiona in your prayers! I will update sometime hopefully tomorrow to let everyone know how she is doing.

10 months!!

Fiona is 10 months old today!

I will be sure to update tomorrow when we know what time we have to be at the hospital on Wednesday. My guess is that it will be around 7 or 8, but I will let everyone know!

T minus 3 days!

I can't believe Fiona's surgery is coming up so soon. It seems like this past month since I scheduled it has gone so fast! Everyone has been asking me how I feel about it. It is hard to put into words. Deep down I know everything will be ok, but I just can't help thinking about everything that could possibly go wrong. I am excited to see how much smaller it will be afterwards, but I don't want to see her in pain. We don't think the surgery on her O will hurt that much because we don't think there are that many nerve endings in that skin. But the hernia surgery will most likely hurt alot.

We Had to Call 911 Again

Well it happened again on Sunday. The same exact thing that happened last time. Fiona was napping in her Nap Nanny in the living room. I had just gotten out of the shower and Tom had just gotten in. I went to check on her before going into the bedroom to get dressed, and good thing I did. She was facing away from me and must haver heard me somehow and woke up (she does that a lot). She was staring at me and I thought maybe if I just didn't talk to her she would fall back to sleep. I stood there for maybe a minute and then walked closer to the side of her and she started to cry and looked at me with the most terrified look on her face. She made the same really weird noise that she made last time and started panicking because she couldn't breathe. I yelled for Tom and he came running out and grabbed the bag and started bagging her while I patted her on the back. I managed to grab the phone and call 911, but sat the phone down because I had to do an emergency trach change. Somehow I did that by myself? Tom continued to bag her while I picked up the phone and talked to the 911 lady. Everything ends up being a blur after this happens, but then we secured her ties and she started to come back up to normal. Her oxygen and heart rate didn't drop quite as low this time as last time, but they were still pretty low and she was blue for probably 2 or 3 minutes. After she came back up to normal it was like she realized that something just happened and starting bawling and looked like she was scared to death. I couldn't manage to pick her up because I was practically on the floor bawling too. So Tom picked her up and the tears were just streaming down her face. THEN the ambulance shows up. They took her to the ER again and did a chest x-ray and tested for RSV just like last time. Everything was fine and so was she. She was being her goofy self smiling and trying to eat everything. We were there for about 2 1/2 hours and then came home. We still have no idea what is causing this to happen. We are trying a few things to see if they help like turning up the temperature on her humidifier and changing her trach more often. Hopefully these things will help to prevent it from happening again. But I was just starting to get over it happening the first time and now I am terrified again. I am scared to leave my house, go to sleep, or even go into the next room. I check on her every 5 seconds pretty much. UGH, I can't wait until this is over.

Surgery is in 1 week! AAHH! I am excited, scared, nervous, anxious, and pretty much any other emotion you can think of. It's going to be so weird to see her belly afterwards. I am anxious to see how much smaller the O will be and how much bigger her waist looks. Everyone keeps asking me what size clothes to get her for her birthday and I have no idea! She is in 3-6 months right now which are getting a little snug on her belly. So I don't know if she will still be in 3-6 months or 6-9. I guess we will just have to wait and see!

I am getting things in order for her birthday party. I am so excited and can't wait until then! I think she will be meeting her goal of her sitting up on her own by her birthday! Now we just need to teach her how to open presents!

She is back to her happy little self!

TEETH!!

Fiona has gotten her first two teeth! The bottom right middle popped through on Saturday and the left middle just popped through this morning. Those little suckers are sharp! I can't wait until they are up far enough for me to take a picture!

Fiona had her first trip to camp this weekend. Tom's family has a camp up at East Branch Lake. We used to go up all the time, but of course haven't been going too much of anywhere this summer. We were there from 10 am to about 8 pm on Sunday! It was a very good day. We got there for breakfast and then sat around and talked and played with the kids for awhile. Then went outside to the pavilion and sat around the fire and cooked dinner. Fiona had her first experience in a jumper and it was so adorable! She had so much fun. She just looks so silly in it because she is so short and tiny!

Here she is in the jumper. She had so much fun. She was in there for about 45 minutes!



This is Tom's cousin Stephanie's (and Devin's) daughter Olivia, Tom's brother Josh's (and Ashley's) daughter Adelyn (Addie), and Fiona at camp. Fiona wouldn't stay still, her arms are blurry because they were constantly moving! Her and Addie kept falling over onto each other!

Her surgery is creeping up fast. It is two weeks from tomorrow. The closer it gets the more I think I am going to freak out a little bit!

She is now babbling and yelling. We think she figured out how to push air out her mouth to make noises! She actually sounds like she is saying "dada"! The goal we are focusing on for her now is to be able to sit up completely on her own by her birthday! She is getting pretty close. She sits for about 5 seconds or so and then starts to fall over. If you sit her on the couch and then just let her fall she thinks it is hilarious! I actually think I heard her laugh today. Not as loud and clear as her babbling and yelling, but it was there!

Last week Tom and I got a very generous package in the mail. We are so thankful for our gift and want our annonymous givers to know how much we appreciate it! We are so thankful for the things people have given us and done for us since Fiona was born. We just hope we can do the same for someone else someday!

9 months!!

I can't believe that Fiona is 9 months old already!
I am already having anxiety about planning her birthday party, haha! We have SO many people on the list and I am having a hard time trying to find a big enough place that works with our budget!

Anyway... let's start with the good news! Fiona's first surgery is scheduled for September 22nd! YAY! We won't know what time until the day before, which sucks! We most likely will have to be there very early. I am thinking 7 or 8, which means leaving our house at 4 or 5 am! I have to call the Ronald McDonald House to see if there is any way we can be put on the list since we know we will be there at least 2 or 3 days. I'm not sure if they will do that or not. If not we have to wait until the day of her surgery to see if there is a room available. And if there isn't we will have to stay in a hotel. Tom has been working so much lately that he jokes that the few days off for Fiona's surgery will be a vacation for him, poor thing!

Ok, on to the bad news. Fiona is getting VERY good at scaring the S*** out of us. Last Monday night I had to call 911 again. Here is what happened: Our night nurse comes in at 11. I usually stay up for a bit and recap the day and bs for awhile. Around midnight I was sitting at the computer and the nurse had just finished feeding Fiona. She was asleep and the nurse was still holding her. All of a sudden she made this really weird noise. We both thought she was going to throw up so I jumped up to get a burp cloth and T (this is what I will call her from now on instead of the nurse!) put her down on her knee. She looked at her and yelled to me that her lips were blue. So I ran over and got the bag (like you see them using in medical shows, we use it all the time when we suction her) and turned the oxygen up as high as it would go. T put Fiona down in the nap nanny and by this time she was completely blue. I started bagging her and her oxygen level and heart rate just kept dropping. Within a minute she was now purple. Her eyes were rolled back in her head, she was foaming, and was completely unresponsive. I handed the bag to T and grabbed the phone and called 911. While I was calling I ran to the bedroom and screamed at Tom to get up and out to the living room. It is all kind of a blur now, but somehow while I was on the phone with 911 I managed to do an emergency trach change. Her oxygen and heart rate still weren't coming up. Her oxygen was at about 35% (supposed to be above 92%) and her heart rate was about 45 (supposed to be 130-140 while awake). T and Tom were trying to secure her trach ties, but she was in an awkward position and the trach slipped out. So I grabbed a new one and handed it to Tom who did another emergency change. As Tom and T were holding her up and bagging her I secured the ties. Her oxygen and heart rate finally started coming back up. Her levels were normal by the time the ambulance got there, but she had been blue for about 5 minutes and you could tell she was just out of it and so worn out. The decided to take her to the ER to be safe. We hate our ER (which is a whole other story in itself) but she needed to go. They did a chest x-ray and tested her for RSV. The Respiratory Therapist gave her an albuterol, which was dumb because she just had one before this whole incident. He didn't even know what flow to put the oxygen at to run it, so I had to tell him. It still wasn't running right and took like 1/2 an hour to finish. I then noticed we still had the HME on (at home her vent is connected to a humidifier, but when we are out we use these, also called an artificial nose or else she would dry out) and it had sucked up all the treatment. So he gave her another one. You are only supposed to give albuterol every 4 hours! Then he proceeded to suction her. I was on the phone and didn't see this, but Tom was furious. Before the RT started Tom told him that we suction down to 9 (there are numbers on the suction catheter). He said "OK" and then shoved the whole catheter down her trach. When he pulled it back up there was blood on the end of it. He was also using the wrong size catheter. He was using a 5/6 and we use an 8. He was a complete dumb ass. So after being there for 2 hours, the chest x-ray was normal and RSV test was negative so they sent us home. UGH, what a night. She got a good talking to and better not ever do that to us again. We actually are not exactly sure what happened, but our best guess is that her trach plugged. I am not entirely sure how I still have my sanity. But I would do anything for that little girl, including getting no sleep because I lay awake worrying about her! Just keep your fingers crossed that nothing like that ever happens again!

Surgery!!

I had been in contact with Fiona's surgeon (well we talked through the nurses mostly) about her hernia and our concerns about still wrapping her O with the ace bandage. I finally got to talk to him last night personally. The nurse had previously told me that if the hernia wasn't hard or red, and if she wasn't vomiting or in pain that it was fine. She also asked if we were able to push it back in! Umm, I wasn't really aware that I was supposed to try that, haha! So I did, and let me tell you, that is one of the weirdest things I have ever done! Anyway... I told Dr. Burns everything about the hernia and the fact that she has been getting alot more blisters on the O. She has always gotten blisters on it, but the ones she had the other day were the biggest ones she had ever had. And yesterday they popped taking off a layer of skin. His first question was, "Well it was just one layer of skin right? You can't see intestines or anything can you?" I said, "Uh, no. I'm pretty sure if I could see intestines I would be there right now!" So after talking for a bit, he decided that IT IS TIME FOR SURGERY! He doesn't want to risk her getting more blisters and compromising all of the good skin on her O. And also her having the hernia has sped things up a bit. The scheduler was supposed to call today, but hadn't called by 3 so I called there. She didn't have all of her records and his orders so she has to call back tomorrow. My guess is that the surgery will be sometime within the next month. I am very excited to get this process started, but sooo nervous at the same time. I just hope that everything goes as planned and we are only there for the 2 or 3 days that he thinks we should be. I am just worried about it affecting her breathing and eating. But I guess no matter what it affects, it has to be done sometime!
Some other good news is that yesterday was the first day she hasn't thrown up in about 2 months! We are in the process of changing her formula so I'm not sure if it is helping already?
She has started making ALOT of noises. We think that she actually knows how to do it and thinks it's funny when she does. She does it alot to get my attention if I have my back turned to her or am in the other room. She also does it alot when she is tired or mad. It is so nice to hear things from her! I tried to video tape it today, but of course she wouldn't do it while I had the camera on! She is a little stinker!
I will be sure to update when we find out for sure when her surgery will be!

Good News and Bad News

Our little gymnast! She is going to take after daddy (for those of you who don't know, Tom was in gymnastics in high school!).

"Daddy is letting me feed myself peas!"

Fiona had appointments on August 3 with Surgery, Pulmonology, and ENT. All of our news from that day was good news! Dr. Burns (her surgeon) was very pleased with the way her O is looking. The compression is working and is doing exactly what it is supposed to. It is crazy the way he pokes and squishes and messes with her belly and she doesn't even care! She just lays there and smiles! He isn't ready to do surgery yet though. He wants to be able to get as much in as he can the first time and thinks she needs a little more time. I'm not so sure I was ready for her to get surgery either. I know it needs to be done and I am excited for that to happen and the day that it is finally repaired, but I am also terrified. But Dr. Burns is awesome and is so confident in what he is doing that it makes me feel a little better! And he told us probably the best news we have ever gotten from one of her doctors. We were talking about her sugeries and he said that we don't have to consider anything that he is doing life threatening!! It was just so nice to hear. Not that there aren't still things to worry about, but that makes the worrying a little less! He also thinks that she shouldn't be in too much pain because she doesn't really seem to be able to feel the O much. He said he's sure she would be able to feel it if we poked it with a pin or something, but it wouldn't be the same sensation as any other part of her body. So we were thinking that hopefully she won't be in too much pain after the surgery (until we got our bad news that is)!

At her Pulmonology and ENT appointment we got some more good news. The ENT part was mostly just a check up from her scope and he said everything still looks good. Dr. Aujla (her pulmonologist) is also very pleased with her progress. We ended up turning her BPM (breaths per minute) down to 16 (from 20) and her pressure control down to 18 (also from 20) and she seems to be doing very well with it! We were actually supposed to leave her BPM at 20 during the night because when she is in a really deep sleep she tends to ride the vent- meaning she lets the vent do all the work and doesn't breath any on her own. Well 16 is too low to let her ride it. But we have had her night nurses watching her closely and she is doing really well with having it at 16 and breathing some on her own! We are working our way down! We still are not sure how her surgeries are going to affect her lungs so we have no idea if she will need to be on the vent the whole time we are fixing her O or not. She breathes really fast just when we have it wrapped with the ace bandage so I would assume the surgeries are going to do the same.

Ok so now onto the bad news. She is still having issues with throwing up. Just today she threw up 5 times. Her surgeon thinks that most of it has to do with wrapping it with the ace bandage because we are putting so much pressure on her stomach. But she throws up even when we don't have it wrapped so we have no idea. We are going to change her formula just to see if that is the issue. Hopefully it works. And some more bad news. We went to Dr. Gorlowski (her pediatrician) last week also, and he think that she has an inguinal hernia. It doesn't seem to be bothering her. Most people are in pain when they have them, but she doesn't seem to be in pain at all. He is hoping that they can just wait to fix it until they do the first surgery on her O. We are also hoping that. But this is why she might be in more pain than we thought if they have to do both things at the same times. Oh and Dr. Burns also thinks that her spleen is in the O too. As he was squishing around he felt what he thought was her spleen.

But she is still happy as can be! She started taking a little more solids. Tom got her to eat peas last night. And she is moving around in her walker, mostly backwards.

We have two new additions to our little circle of O babies. Please keep Lincoln and Harper (and their families) in your prayers as they are both still in the NICU.

Pictures!

She is still not quite used to the sun when we are outside so we had to put sunglasses on her!

This is her cousin Jackson holding her! He loves her!

Tom's whole side of the family! His mom and her boyfriend, both of his brothers and their wives and Fiona's cousin Addie!

Me, Fiona, and Tom at a wedding this past weekend (Tom was the best man)!

Fiona in her pretty dress at the wedding!

Sucking her thumb! I think it is adorable!

This is how daddy puts her to bed, haha!

8 Months!!

Fiona was 8 months old on the 20th!

Update on the scope (actually called a Bronchoscopy and Laryngoscopy!): It went really well. Except for the fact that we had to be there at 7 am, haha! We had to leave our house at 4 am. Poor Tom (he drove)! Anyway, we got there at about 6:40 and were taken right back to the recovery room since she is on a ventilator, so we didn't have to wait in the waiting room. They came to get her at about 8 and Tom and I went to the waiting room. About 15 mintues later the Dr. came to talk to us and she was done already! We had to wait about another 10 minutes for her to wake up and then we went back to get her. They actually ended up not even putting her to sleep. They just gave her some pain medicine to make her a little sleepy. Dr. Mehta (her ENT) said that everything looks good. There were a couple of things that he explained to us. He saw a very small piece of her left lung was collapsed, and her airway braches of into her lungs at a spot that it is not supposed to, but that neither thing was anything to worry about. He also had to remove a small amount of granulation tissue which is a very common thing. Overall it went really well and we got some crazy looking pictures of her airway and voice box and vocal chords, haha!

Since then we have been having lots of trouble with throwing up. We also have been having to suction her more. We have no explanation for either thing and are just trying to figure out what's going on. We thought maybe it had to do with the scope, but the Dr. said it shouldn't. We think the throwing up is partly because she is getting more air (because we are making her bottles so thick with cereal for the extra calories we can't use the insert that prevents her from getting so much air). She probably has to burp, but it is so hard to burp her. Most of the time she doesn't burp for a couple hours after she eats and then sometimes still throws up, so who knows. It also may have something to do with her O being wrapped with the ace bandage. I'm sure if my stomach was being squeezed I would throw up too!

It is so neat to see her growing developmentally! She loves when people clap for her and when you make her clap, but she can't quite do it herself yet. She started bouncing up and down while she is sitting and it looks like she is dancing. We have started using signs when we talk to her. Mostly mommy and daddy and bottle. I can't wait until she can start doing them! She loves to grab her feet and legs and has started putting her feet in her mouth! We are still really working on putting weight on her legs and working towards getting her to sit up on her own. We have been trying to get her to eat solids, but she doesn't like them! She does ok with tiny little tastes, but won't actually take a whole bite.

Her O is FINALLY ALL SKIN!! YAY!!

Our next appointment is next Tuesday (August 3) with Surgery, Pulmonology, and ENT. Her surgeon will decide if she is ready for surgery yet. And hopefully Pulmonology will turn down a setting on her ventilator!

Appointment Update

One of our attempts at cereal! More on her face than in her belly haha!

First day at home that we had her belly wrapped with the ace bandages!

Well we had a LONG day in Pittsburgh on Tuesday. First we saw Urology - for her kidney reflux (VUR). Even though we had to wait 1 1/2 hrs for a 10 min appointment (UGH!) it was a good appointment. They did an ultrasound of her kidneys. She still has the reflux - grade 3 (out of 5) in both kidneys. But they say that it still has a really good chance of fixing itself which is awesome! Even if it doesn't ever fix itself they don't usually so surgery unless it causes reoccurring kidney infections and Fiona has never had one of those *knock on wood*.

Next we saw Pulmonology and ENT (they do a joint "Airway Clinic"). They did a scope down her trach and said everything looks really good. They are always amazed at how good she is doing! They turned her rate down again from 22 to 20. We got rid of one of her medicines! Yay for no more Sodium Chloride! And she is getting her Albuterol (one of her breathing treatments) every 8 hours now instead of every 6. The Pulmonary Dieticians are the ones who decide how much she needs to eat based on how many calories she needs for her weight. Apparently they didn't think she was getting enough calories so now we have to bump up how much we are feeding her. She is supposed to be taking 95 mL at every feeding - which is a little over 3 ounces. Yeah, try telling her that. Sometimes she will take more than that, but sometimes less, so we are just doing what we can.

After that we saw her Surgeon. We love him by the way! And I think he loves her, haha! He always tells us like 5 times how great she looks! Well he poked around at her O like he usually does and then decided that he wanted us to start wrapping it with an ace bandage. We knew that was coming eventually, but didn't realize it would be then! So he went and got some and wrapped it. I guess the purpose of doing this is not really to push anything back in, he will be doing that when he does her surgeries to remove skin. The purpose of us wrapping it is to create pressure in her abdominal cavity so that it starts to expand and make some room in there for when she does have surgery. And speaking of surgery he thinks that he might want to do the first one at the end of August! I am both excited and terrified. I am excited that this whole process of making her better will be starting. But terrified because my baby is going to be getting surgery, and lots of them.

New things in our everyday life: Fiona started sucking her thumb and even though I probably shouldn't be letting her, it is SO cute! We have been trying to get her to eat cereal from a spoon, with not much luck. She started "running" like crazy! You should see those little legs go! And she also started whipping things back and forth, like her rings and teddy bear and it can get kind of wicked! Oh and I just quit my job tonight so that I can be a full time stay at home mom!

If I don't update before Friday (the 9th) please remember to say a little prayer for her. She will be getting a scope of her trach done in the OR and will be getting put out for it. It is nothing major, just a check, but still potentially dangerous. Thanks :)