Baby Steps!

This is Fiona's preemit outfit laying on top of her! She wore it when she was a month old and it was still big on her!

She wiggles herself from one end of the couch to the other to pinch Zeus, haha!

This is what happens when I leave my coupons on the coffee table and turn my back, haha!

Fiona had her appointment with Pulmonology and ENT on the 18th. The appointment went good, although not as well as we had been hoping. At first everyone was on board for doing the sleep study and getting her trach out! They were in the process of scheduling the study for Feb 1st. In the mean time they wanted to put in a smaller trach and have us start capping it off until then. Well we put the smaller trach in and when they capped it she didn't do too well with it. She had alot of "back pressure". Tom and I are still kind of confused about this. She was still trying to breath too much out of the trach instead of her nose. But how is she supposed to completely breathe out of her nose when the trach takes up most of her airway?! We have no idea. So they decided to cancel the sleep study. She still came home with the smaller trach and also a speaking valve and the caps. The speaking valve works by letting her breathe in through the trach and then the "diaphragm" closes and makes her breathe out of her nose. But this valve can actually go from completely open to completely closed. So right now we are at about 1/2 closed. She is tolerating it very well. We can gradually make our way to completely closed. We put the cap on periodically for a few seconds at a time. The cap makes her breathe completely in and out through her nose so it is a little harder for her, but it seems like she really likes to make noise! We will work with the valve and the cap getting her to breathe through her nose better for a couple months. We see them again in April and hopefully she will be ready for the sleep study by then!

She has been working on her walking and is doing really good with it! She now takes steps without us having to push the backs of her feet. She loves to walk around the house and I find her trying to get down off my lap because she wants to walk! She can also stand for a minute or so while playing with her music table or at the couch or coffee table. We are hoping that after her next surgery she will have better balance and will be able to take off!

Speaking of surgery, we have 3 days! I have the same flood of emotions as last time... scared, anxious, excited, nervous... I know she will be fine. I am mostly nervous about her recovery. She has become very clingy to me lately and I have no idea how she is going to react to the nurses and doctors. It gets worse when she is tired and sometimes cries even when I leave the room at home! I might have to sleep in her room (I hope not!). Tom and I just booked a hotel room for Tuesday night because the weather is supposed to be getting bad. It will be Fiona's first hotel stay and Tom said he is kind of excited. I told him that it is pretty bad that staying in a hotel in Pittsburgh the night before Fiona's surgery is like a mini-vacation for us! I guess we have to take what we can get!

Please keep Fiona in your thoughts and prayers on Wed! I will update to let everyone know how it went!

Goofball!

This is what happens when Fiona gets stuck! And she is also making the new noise she learned how to make!

Smarty Pants

Miss Fiona has decided that she is going to smack me every time I tell her no! She really likes to pull on the gauze on her O for some reason. Well I constantly tell her no and pull her hands away. The other night she smacked me twice when I did it!

She is just a big ball of energy! You can tell she just wants to get down on the floor and play. Hopefully soon! She signed her first word yesterday! I asked her how to say "hat" and she surprisingly did it for me! Luckily my mom was there to witness the 4 times she did it because now she won't do it anymore and won't even show daddy! We are working on walking with her and she is doing great. At the beginning we had to move one foot and she would move the other, but now she is moving both pretty well until she gets excited and then just hops! We have also gotten her to stand for a few seconds at a time while holding onto her play table

We have an appointment with Pulmonology and ENT next Tuesday (the 18th) to discuss where we go from here with the trach/vent. I can't remember what I said in the last post, but she is off the vent all day and can be most of the night. The only issue we are having is coughing from her being so dry. So when she starts coughing we put her back on. Her nutritionist is very worried about her lack of weight gain and so now is her Pulmonologist. We don't really know what else to do but to keep trying to get her to eat as much as possible. I weighed her this morning and she was 13 lbs. 11 oz. We really hope this doesn't interfere with getting her trach out. Tom said they better have a really good reason not to do the sleep study or he is going to be furious. We are both just so ready for the trach to be out and have somewhat of a normal life. We are so very lucky that most of her issues are not a lifetime thing. I can't imagine having to deal with a trach/vent her entire life. I have *kind of* gotten to have some normal nights with her! We only have a part time night nurse now. So on the nights that we don't have a nurse I take her in our bedroom and let her sleep in bed with me. (Tom is on 3rd shift, so it's just me and her!) I don't really get much sleep, but it is so nice to have her in bed with me! Tonight is one of those nights :)

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.