Photo Bomb!

Merry Christmas!

I can't believe it has been so long since I posted! No news is good news though, right? Well mostly! Fiona has been doing GREAT with weaning off the vent. We are now working at nighttime because she is off pretty much all day. The only problem we have had is that she coughs so much when she is off that she throws up (I can't remember if I have written this before, haha!). So we just got a humidifier the other day that she can be hooked up to when she is off the vent. We haven't had to use it yet though. Her eating is not going as well as the vent weaning! From 2 weeks ago until last week she had lost 6 oz and her nutritionist was not very happy about it. We are trying EVERYTHING we can to get her to eat and get as many calories into her as possible. Thanks to another O mama, we are now putting heavy cream in 2 bottles a day. There are 50 calories in 1 tablespoon! We are also melting sweet cream butter and mixing it into her baby food. We have an appointment tomorrow with a feeding clinic in DuBois. I hope they figure something out. They will evaluate her and then let her OT know if they have any suggestions or anything. We also just found out that Fiona will be having her 2nd O surgery on February 2nd! We didn't think it would be so soon, but are very excited! Still kind of nervous, but since we know what to expect now it isn't so bad. We are hoping they can do her sleep study while she is down there for her surgery. They have to do a sleep study before they can take her trach out. We honestly think at this point that she would be fine without it. We think it is causing more problems than helping! The only issue is that sometimes she stops breathing while she is sleeping so she might need a nasal cannula or something to help her out a bit until she outgrows that.
We had a wonderful Christmas. Fiona got a TON of stuff. We have no idea where we are going to put it all! Tom and I have amazing families. THANK YOU TO EVERYONE :)

Happy 1st Birthday!!

Yesterday my baby girl turned 1 year old! I didn't have time to update yesterday, we had a LONG day! She had the most wonderful party. It turned out great. We are so lucky and thankful for our families and everyone who helped make her birthday so special! I think we might have to add on a room for all the stuff she got!

I can't believe that a year ago we were still in shock that Fiona had been born already. She has gone through so much in this past year, but yet always has a smile on her face! I am glad she won't ever remember any of it.

HAPPY BIRTHDAY FIONA!

I will add some pictures of her party later!

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!