Happy Trach Awareness Week!

I know most of you who read my blog also have me on Facebook, but I know there are a few of you who don't! So I will probably be posting some of the same stuff on here as I will be on Facebook.

This is the first ever Global Tracheostomy Tube Awareness Week! Our journey with a trach has been a crazy one. In my head I think that it has been so long, but really it has only been a little over 2 years. In the perspective of her life span, that's really not that long! My hope is that she won't remember the things she has gone through, but I want her to know that having a trach is nothing to be ashamed of. Really, having a trach is part of what has made her Fiona! It's not always easy, but it has become normal.

I will be making a few other posts with pictures and such so stay tuned :)

Here is the link for the video I made of Fiona if you would like to watch it!

http://www.youtube.com/watch?v=S50N3ZZV0N8&feature=share

Round 3 *ding ding*

So you all know that Fiona had a sleep study on March 8th. We had to wait until April 17th at airway clinic to find out the results. And they were definitely NOT what we wanted to hear. They wanted to repeat the sleep study. Seriously, what? A THIRD sleep study? The results of the second one showed an apnea index of 17. Which means she had 17 apneas AN HOUR. She had mixed, which means both central and obstructive. I think I have explained the difference before, but in case you missed it: central sleep apnea is when your brain periodically stops sending signals to tell your body to breathe. Obstructive sleep apnea is when there is something causing your airway to close or be partially blocked (most adults have this kind). There is a question as to why Fiona would have either type of apnea. A lot of preemies have central apnea, but most have grown out of it by this age. And it's pretty uncommon for a kid with a trach to have obstructive apnea since the trach is actually holding the airway open.

Hearing that she was going to have to have a 3rd sleep study was a far cry from the words that we were hoping to hear. So a few days later they called to schedule the sleep study and said the 1st available appointment was July 5th. Are you kidding me? So they put her on "high priority" on the waiting list. It got moved to May 21st which is a bit better. Then he calls me Thursday night (April 26) and asks if we could come the next night (Friday, 27) so of course I said we would be there. I don't think I was fully prepared, but I knew the sooner the better.

So here is a night in the life of a child getting a sleep study:

5:30 pm- Arrive at hospital and get admitted.

6:00pm- Get to her room and watch her sad face as she realizes where she is.

6:15-7 pm- Answer lots of questions, tell history and meds, see 5 different doctors and nurses.

7-8:30 pm- Try to keep a 2 1/2 year old entertained, go eat dinner in the cafeteria and visit with NICU nurses :)

8:30-9:30 pm- Hold Fiona down while all the probes, leads, and sensors are being put on her.

9:30-10 pm- Try to distract a tired, crying child while tech is finishing setting up.

10-10:45 pm- Rock Fiona to sleep.

10:45 pm- Try to put Fiona in crib, but accidentally put her head on top of all wires, Fiona wakes up.

10:46-11 pm- Rock Fiona back to sleep and successfully put her in crib.

11:15 pm- Tech comes in a tells me to put cap on Fiona's trach.

11:20 pm- Tech comes in to fix a wire.

11:25 pm- Tech comes in to fix a probe.

11:30 pm- Tech comes in to fix a sensor.

11:45- Tech comes in to do who knows what, Fiona wakes up.

11:45- 12 am- Give Fiona bottle and pat her back to sleep.

12:30 am- Fiona wakes up coughing, coughs so hard she throws up, falls back to sleep.

12:45 am- Fiona wakes up, give her bottle and pat her back to sleep.

1:15 am- Fiona wakes up, give her bottle and pat her back to sleep.

2:00 am- Fiona wakes up, give her bottle and pat her back to sleep.

2:30 am- Fiona wakes up coughing, coughs so hard she throws up, Tom suctions her.

2:31 am- Tech comes in and yells at Tom for taking the cap off and suctioning her.

2:32 am- Clean Fiona up and change blankets.

2:35-2:50 am- Rock Fiona back to sleep, have to lay her on wires because she is SO tangled.

3-5:30 am- Is a bit of a blur...

5:30 am- Tech comes in to start taking off all wires/probes/sensors, hold Fiona down for this.

6:30 am- Leave hospital and drive the 2 1/2 hours home (well, poor Tom drives while we sleep).

We have an appointment scheduled for Airway Clinic for May 15 so we will find out the results then. From the bits and pieces that the tech told me, the last one was not a mistake (they were thinking it was a possible machine error). If this is the case, then comes the task of figuring out why she has so much apnea and what needs to be done about it.

Genetic Testing

So, I started this post a couple weeks ago, but never finished it. So here is the part that I wrote before...

Alot of you saw on Facebook that I posted that Fiona's oligoarray (a test that looks for specific duplications or deletions on each chromosome) came back normal! This is great news, but it doesn't just stop there. On one hand we are very happy that it came back normal, but on the other hand it just means that we have to keep looking for answers.

Most of my posts keep things to the fact- what is going on with Fiona and how she is doing. Rarely do I post about how I feel. But all of this genetics stuff is very frustrating. I can't tell you how many hours I have spent researching things and looking for answers. My head is constantly spinning and I feel like most people just don't understand. Most people have no idea what it's like to just KNOW in your heart that something is going on, but no one can seem to figure it out. I am not one to just pour my feelings out there, so people see what I want them to see. No one sees the things that we struggle with on a daily basis. No one sees what goes on in my head. I'm not saying that things are horrible, because they're not. She is AMAZING and I love her to death. She is smart and beautiful and I would not change her a bit. But things are complicated. It is very frustrating when no one can give you an answer or a solution so you just have to figure things out on your own.

I'm not saying all this because I want you to feel sorry for us or because I want your pity. I say these things for a chance for you to understand...

And now on to the test results:

Last Thursday (March 8th) Fiona had a bone survey (which is basically an x-ray of every bone in her body) and a bone age test done. I just talked to the genetic counselor last night and she gave us the results.

The bone survery didn't really show anything that gave them any sort of clues. The only thing they really noticed was that there is a slight increase in the distance between the discs in her spine. But apparently this is not really an issue.

Her bone age test on the other hand showed that her bone age is very delayed. She is 27 months old and her bone age is 15 months. This basically means that her body thinks that she is 15 months old, which is why she is so small and growing so slowly. Ok, so now we sort of have an answer as to why she is so small. The bad news is that a delayed bone age isn't really an answer or a diagnosis in itself. There has to be a reason that she has such a delayed bone age.

One "good" thing about this is that maybe now I don't have to worry so much about how much she is eating and how many calories she is getting. I mean, I still have to make sure she is gaining weight, but I know that she is always going to be small no matter what she eats or how many calories she gets. (I am going to call her nutritionist today just to be sure about all of this)

So what's next? We will start DNA testing for a group of disorders that her geneticist thinks she might have. We will also be seeing endocrinology (hopefully soon) because they deal more with the growth part of things.

There is never a dull moment around here :)

A Week From Hell...

If I never saw anymore puke or poop for the rest of my life, I would definitely be ok with that.

 

 

Sunday night (the 5th) Fiona started throwing up. As you know, throwing up happens alot here. But this throwing up was different. Usually she throws up mostly when she coughs or gags on something. This time she was just throwing up out of no where. I finally got her to go to sleep around 11 pm. She woke up at midnight and threw up all over herself and we had to change her trach. I got her back to sleep only for her to wake up again at 2:30, once again puking, and we had to change her trach ties. The rest of the night is a blur. I have no idea if I even slept at all or how many more times she threw up.

 

 

Of course Tom had to go to work for a couple hours on Monday. But the throwing up continued. By this time I was getting worried because she wasn't keeping ANYTHING down, not even Pedialyte. So when Tom got home we took her to the ER. She was just about at the point of dehydration. They started an IV (which is a whole other story- our local ER is awful at getting an IV in her. I had to hold her on my lap in a bear hug while Tom held her legs down. They tried once in her hand and I told the nurse she had to stop because she was poking around), did lots of blood work, a chest x-ray, and a belly x-ray. They started fluids and were thinking about doing a cat-scan of her belly. Apparently the radiologist saw something that he wanted a closer look at. Luckily they decided not to do it because they were going to have to sedate her for it. We had an AWESOME doctor (which doesn't happen much there) and he was trying to get her admitted to our hospital just for observation overnight. But they won't even think about it because of her vent. So then he was debating whether to send us home or to Pittsburgh. Luckily he just sent us home. So after 6 hours in the ER and some fluids she seemed much better and we assumed that we were just dealing with a stomach bug.

 

 

We got home around 8 pm. Very shortly after that the diarrhea started. The first couple times we thought it was either just the bug or from the fluids. By this point ALL she wanted to do was drink. Which is unusual for her because she really doesn't drink that much during the day. We gave her a bath because her little bum was getting so sore from pooping so much. She even took her cup in the bathtub with her. She would not let that thing out of her sight. But as fast as she was drinking, she was just pooping it back out. I was changing her diaper about every 10-15 minutes.

 

 

I got her to fall asleep around midnight, but she woke up at 1 am screaming because she wanted a drink. She then started to throw up again. But if you took the cup away from her she would scream like I have never heard her scream before. I had never seen her like that. Her face was pale, her eyes were dark, and the rest of her body was blotchy. Her hands and feet were cold, she was screaming, and her whole body was shaking. We took her to the ER again around 2 am. We actually packed our stuff for Pittsburgh because we thought for sure that they would be sending us this time. But he didn't really do anything. Just told us to only give her little amounts to drink because she was drinking too fast and her stomach was too full and that's why she was throwing it back up. We were back home by about 4:30 and then it was time to try to get some sleep (yeah right!). This part is kind of a blur too. I have no idea if I slept or how many poopy diapers I changed. She was actually pooping in her sleep and didn't even know it.

 

 

Around 11 am I got a call from our ER that they were rechecking her x-rays and they thought that her liver might be enlarged. I called her surgeon and they called me back and said he wasn't so concerned about her liver, but he wanted to make sure she didn't have an obstruction somewhere in her intestines. So we packed up all the rest of the stuff we needed and headed to Pittsburgh.

 

 

We got to Pittsburgh around 4:30. They started her on IV fluids, did more blood work, cathed her for a urine test, tested her poop, and did more x-rays. She was still pooping SO much and her poor little butt was so red that it started bleeding a little while we were there. We finally got into a room in the PICU around 8 pm. She has to go straight to the PICU, even if she isn't that sick, because of the vent at night. She is already so terrified by doctors and nurses and to make things worse she was in isolation because of them thinking she had c. diff. This meant that everyone that came in her room had to put a gown, mask, and gloves on. What 2 year old wouldn't be afraid of that? The poor thing was so exhausted, but I swear every time I got her to fall alseep someone would come in a wake her up. They have to do vitals every 2 hours in the PICU and that doesn't include the respiratory therapist or doctors checking on her. No one really got any sleep that night.

And then they ordered blood work for 6 am. And guess what? Her IV wouldn't draw back so they had to poke her again to get the blood.

I can't even put into words what it's like to hold down your baby girl while she is screaming "Mama up, mama help, MAMA PLEASE" while you are saying "It's ok, it's ok" knowing damn well that it's not ok and you want to cry right along with her. (And then multiply that by about 20 times just this hospital stay)

And of course as soon as I got her back to sleep her nurse came in to do vitals and woke her back up. I know that they need to do vitals, but how is a kid supposed to get any better if they won't let them sleep? The rest of the day was pretty awful. It is pretty hard to keep a 2 year old entertained in a hospital bed. She couldn't even stand up because her IV was in her foot. She was pretty mad about that. And to top it off, Tom was sick. Tom hardly ever gets sick, but he couldn't even move off the couch. So if it wasn't already hard enough, it was like I was there by myself, BUT I also had to take care of him. At some point during the day we found out for sure that she did have c. diff-

Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL), often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.

In recent years, C. difficile infections have become more frequent, more severe and more difficult to treat. Each year, tens of thousands of people in the United States get sick from C. difficile, including some otherwise healthy people who aren't hospitalized or taking antibiotics.

We had to start giving her a medicine called Flagyl. We already have a hard time giving her meds because of her eating/gagging/throwing up issues. She was not happy and fought us as hard as she could, threw up, and fought us some more.

(This was one of the happier times during the day!)

She did really good during the night so they stopped her fluids in the morning and then decided that she could come home on Friday afternoon. For some reason this was one of the worst hospital stays we have had. She was miserable and Tom and I weren't much better. I think alot of it had to do with not getting any sleep. Tom and I had to sleep in her room both nights switching between the couch that turns into a "bed" and the "recliner".

She is still pooping like crazy. And our biggest problem has been getting her to take her medicine. I actually tasted it to see why she was gagging and it is seriously the worst thing I have ever tasted in my life! Even I gagged on it! And we have to give it to her 3 times a day. We had a couple tricks that worked at the beginning like putting it in pop or giving her ice cream to get her to open her mouth and in between squirts, but those only lasted so long because she is one smart girl! I posted a couple different places online looking for suggestions or tips, but nothing seems to work. Our "trick" that has been working since last night is to use the tiny little syringes and almost stick it down her throat. That way none of the medicine touches her tongue. It still sucks, but she hasn't thrown it back up that way.

She seems to be doing much better, despite the pooping. She is back to playing and being her crazy little self! It's so good to see her smiling again!

So there you have it- a week in the life of a medically complex kid with c. diff!

Pictures of O Awareness Day!

This was Fiona's first outfit, but I didn't get a picture BEFORE she threw up on herself haha!

And Fiona and I in our black and white :)

I was overwhelmed by the amout of people who participated in Omphalocele Awareness Day! Thank you to everyone! Hopefully we can find a way to make it an official day and it can start growing. I plan to have a lot more stuff made up for next year :)

We really do need to spread the awareness because people just aren't getting the right information. Doctors (and sometimes families) are still sometimes pushing for termination of the pregnancy- I actually just read a post about this the other day. They give the families no hope. People need to know about the increasing number of success stories out there!

Even though our awareness day is over, please keep helping! Share our blog :)

Happy Omphalocele Awareness Day!

I hope you are all wearing your black and white today!

Check out the new "tabs" I have a the top in honor of today!

Hopefully at some point today I will be adding another tab with O pictures from birth until now, so check back later!

My how time flies!

In preperation for the upcoming 1st ever Omphalocele Awareness Day on Tuesday January 31st, I am hoping to get my blog updated! I would say that I am really hoping to be able to blog more like I always say, but we all know how that ends up :)I am also making some awesome changes (thanks to a friend for giving me directions!). I am in the process of making "tabs" at the top of my page with info, Fiona's story, and some pictures!

I am hoping to have lots of views to help spread awareness in the next week or so!

Merry Christmas!

Fiona is 2!!

We had a great birthday party with our immediate families! We had a HUGE party last year so we figured we would keep it simple this year!

She had lots of fun and got so many presents! We also had most people give her money so that we can buy her a swing set in the spring!

She has been obsessed with the Little Einsteins lately so that is what is on her cake!

I can't believe my baby is 2 already!

Boy, have we had a long week!

Well last Monday morning we headed to Pittsburgh (which is 2 1/2 hours away for those of you who don't know) for her Upper GI with small bowel series. She was not allowed to eat for 4 hours before it. We actually got back there on time. So now comes the task of getting her to drink the barium. She refused so we tried a syringe which backfired completely because she threw up like 5 times. So they ended up having to put in an NG to get the barium into her. She was pretty much hysterical the whole time. And they only allow 1 parent back (not that it would have mattered much because my dad was with me and not Tom). Anyway, it ended up taking about 5 1/2 hours for the whole thing, and it sucked because she wasn't allowed to eat that whole time. Results: she has some malrotation of her small intestine and it is no where near where it is supposed to be. But they somewhat expected that because of her O and said it isn't causing any problems. YAY!

We got home around 6. I was rocking her to sleep at about 9:30 and noticed she felt hot. Temp was 102.7. She never had a temp that high so we took her to our ER. When they took it there it was 103.2. They started an IV, fluids and antibiotic, and decided to ship her to Pittsburgh. By this time it is 2 am. I went in the ambulance with her and Tom went home. So we get to Pittsburgh at 4 am. Sit in their ER until 4:30 when they take her up to the PICU. She has been in the hospital so much that anytime someone even walks in the door she starts bawling. I couldn't even sit down (I was there by myself because we decided it would be best for Tom to get some sleep before driving and to go to work). They did blood tests and x-rays, etc. We had already known that she had a trach infection since the Wed before that, but they are saying that it was the source of the fever. So I had been up for 34 hours before I got to nap for 1 hour and then back up for another 6 until she went to bed (thank goodness for Aunt Di coming to visit us so mommy could get a little rest!). The next day she was pretty much back to normal so we thought for sure she was getting discharged. They had other ideas. They were concerned about her respiratory rate. I tried to tell them that she always breathes fast, but they wouldn't listen. She was not in any obvious distress, no nasal flaring, no retractions, and her O2 was good. Anyway they kept her another night.

She got discharged Thursday morning at about 10:05 and we had an appointment with the Feeding Team downstairs at 10:10. They were very nice and the one doctor kind of agreed with us that she is small, but looks healthy and it is not affecting her development at all. They still couldn't give us a reason for the gagging. Said to try putting her on a schedule, which has never worked with her. She now has the learned behavior of spitting things back out or taking them out of her mouth because she knows she will most likely gag on it. And for a long time I made her spit stuff out because I knew she would gag. Ugh, so no real answers there.We then had a cookie swallow at 2:15. And she wasn't allowed to eat in between the 2 appts. Cookie swallow was good though and she is cleared for all types of food.

Fast forward to Thursday night when we get home. She starts hacking up a lung, breathing REALLY fast, and her oxygen is low. Called her pulmo on Friday and they thought maybe she just had a cold. Got worse on Saturday so we took her to the ER. They saw "something" at the bottom of her lungs. So we left with orders for albuterol every 4 hours and constant oxygen until she is better. She was already on an antibiotic for the trach infection.

Today her cough seems a little better. But her oxygen still sucks. If I take her off she drops into the low 80's and sometimes high 70's. And the oxygen tubing SUCKS! The poor thing keeps getting tangled in it!

Some good news: She is AMAZING with her sign language. She is up to about 60 words and is picking them up really fast. She has also started to verbalize. She says "mom" "dad" "Nana" and "hide" which is her new favorite word! She also tries to say NeeNee, Poppa, and Zeus and will try to make any sound that you ask her to. She is trying to jump and it is the funniest thing ever! And despite being sick she is still her happy little self!

4th O surgery!

To make a long story short, Fiona's 4th (and final!) O surgery went great! Her amazing surgeon was able to get full muscle closure! She was only in the hospital over night again this time. She was up and walking the next day, which we thought was amazing! She sure is a little trooper!

This is from a couple days after her surgery.

And this one was to show how much has changed in a year! 9-21-10 was the night before her 1st surgery. And 9-21-11 was about 3 weeks after her 4th surgery. It is amazing to look back at how HUGE it was!

Her scar is healing up nicely and some day we will discuss giving her a belly button. Tom thinks we should leave her without one because it will give her good stories to tell, like that she was abducted by aliens, hahaha!

Where should I start?!

Every time I think I am going to be able to update more, it gets longer until I do haha! August was a very bust month for us, so let's see...

*We had appointments at the beginning of August with ENT and her surgeon.

*She had an appointment with her pediatrician on Aug. 10th because I thought she possibly had a UTI. Awful, awful appointment as I had to watch 3 people try for 30 minutes and were completely unsuccesful at getting a catheter in. So she had to come home with a bag taped over her lady parts to catch the urine for a sample. It ended up being nothing.

*She had a sleep study done on the night of Aug. 16th. That was another pretty awful experience. We had to be there at 6pm. We got through registration, talked to the doctors, nurses, and techs. So it was about 7pm and we had nothing to do until it was time for her to go to sleep! I have no idea why we had to be there so soon. We went and visited some of her NICU nurses, went to the cafeteria and got something to eat, and then went back up to the room and played and watched t.v. until about 9:15. The tech came in and started putting everything on her. She had electrodes stuck ALL over her! There were at least 20 on her head and face, 2 on her chest, 2 on each leg, 2 belts around her chest and belly, a nasal cannula, and a probe taped to her upper lip. I got her to fall asleep pretty fast but as soon as the tech came in to cap her trach she woke back up. Long story short- she could not tolerate her trach being capped and we had to take it off at about 1:15 am. She woke up a couple times and woke up at 5 for good and we got ready and went home.

*She had an appointment with her Pulmonologist on Aug 26th. She wanted to see her to discuss the trouble she has been having at night (low oxygen, apnea, etc.). And we got the results of her sleep study (I will get to them!).

(OK, I have been trying to write this post now for 4 days haha! No wonder I don't post much! So I will just post what I have and come back and update again when I can with the rest!)

Most Recent O pictures!

WARNING: O pictures below! You might not want to look at them if you get queasy easily!


This is Fiona's belly about a month ago (so 2 months post 3rd surgery). The open areas are the Gortex patch underneath. Like I have said, it doesn't cause a problem that it is exposed, we were just really hoping for it to stay closed this time. We (well we meaning me!) are changing the dressing once a day. I put wound get on it a couple times a week. That stuff just makes a mess and gets crusty and sticks to the patch, but I do think it helps skin growth so that's why I am still using it sometimes. I then put a non-adhering dressing on so that the top layer doesn't stick directly to her belly. Then I either put just 4x4 pieces of gauze on top and tape them down or 1 piece of gauze and a piece of Duoderm adhering dressing (this stuff is water proof and is what we put on when she is going swimming, but it also sticks better than the tape so sometimes I use it on other days too). She has had Pseudomonas twice since the last surgery, but it doesn't cause any major problems and easily goes away with the acetic acid treatments. Her belly is now even more open than it is in this picture so I will have to take a new one soon. I just discovered last night that the patch on the one side isn't even connected to anything anymore and that skin has grown underneath it!

Where have we been?!

I can't believe it has been so long since my last post! And I don't have much time because it is almost time for OT, so here is a quick summary!

It has been SO hot here. I don't know what we would do without our airconditioners. Funny story (ok funny now, not at the time)... the other morning I was trying to close the top window (we have really old window and they suck and don't stay up) and the damn air conditioner fell out the window. So we had to go buy a new one, got it put in, it worked for 3 hours and then quit. Stupid Walmart. So we had to buy another one.

Anyway, Fiona is doing pretty good. We can't seem to go more than a couple days without a trach infection, if it even goes away at all. The poor thing has been coughing so much and coughing inevitably leads to throwing up. I am so sick of cleaning up puke 5 or 6 times a day. And it's not just a little mouthful. Usually it is projectile-puke-up-everything-I-just-ate puke.

We are still having lots of eating issues. No one can figure out why she gags like she does. It's so frustrating trying to get her to eat anything.

Developmentally she is doing great though! I'm not sure how she is gaining any weight with as much as she throws up, but she is up to 16.5 lbs now! She is walking all around the house. I still can't just leave her be because she is still a little unsteady. We are working on pulling up onto things and getting up off the floor. Her PT told me that I need to let her play and explore on her own more, but it is hard when you are used to being right there for so long! And she is still very, very clingy. She is up to about 40 signs! And putting 2 together ("open, please" or "daddy, work" or "Zeus, bad" haha). She LOVES to swim! It makes me a bit nervous because we already had one water in the trach incident, but everyone knows to be very careful when she is in the pool.

We are down to only having nursing 2 nights a week so I don't get much sleep, but it's kind of nice not to have people here! She sees ENT on Aug 2nd and we are really really hoping that he says she's ready to decannulate! Keep your fingers crossed! She also sees her surgeon that day and we will probably get a date for her next surgery.

I will try to add some new pictures soon!

It's Always Something...

I mentioned in the last post about Fiona having to get another trach culture done. Well it came back positive for Pseudomonas (which is what she had on her belly that one time!), Streptococcus, and yeast. She was already on drops and an antibiotic and those seem to have taken care of the problem. Let's hope she doesn't start a cough again.

We are also having some issues with her belly. I posted the pictures of how the incision was coming open. Well now the other side of her belly is coming open. It started as very dry, flaky skin and we thought for sure it was a blister. Then it started to change colors and looked almost like a bruise. Then one morning it started to ooze and broke open. Not a blister though. It is where the Gortex patch is sewn underneath her skin. So every day that area opens up more and more. Soon I think most of the skin in the middle of her belly will be gone. Ugh. It's nothing horrible. We are just doing what we had been doing before with her dressing and everything. It's just that this time we weren't SUPPOSED to have to do that. And I was so looking forward to that. (I will try to post some pictures later)

On to some good news. Since the weather has been nice here, Fiona and I have been getting out of the house alot! Even if it's just out on the deck, it's so much more that we did last year. It's not even summer and I'm pretty sure that we have been out of the house more in the past 2 weeks than we were all last summer! She LOVES to swing and signs swing all day long (side-tracking, she is getting awesome at signing) and then gets mad at me if we can't go out if it's raining or too cold. I also bought her a water table for out on the deck and she loves playing with that too. We have had some exciting "firsts" in the past couple weeks also. She went to the park for the first time. And today was her first time swimming (we did have one little incident where she got a little water in her trach :/). But overall she is doing great! (She was 18 months on the 20th and is now 15 lbs 8 oz!)

So even when I think that things are bad I have to kick myself for forget for a second how lucky we are. Lucky to have such a beautiful, smart, happy little girl. I have met some amazing people in the past 18 months. They and their kids have taught me (even more that I already knew) not to take ANYTHING for granted. We are lucky that she can walk. Lucky that she can see and hear. That she can breathe on her own and doesn't need oxygen. That she is relatively healthy and home with us and not in the hospital. Even that she can pee and poop on her own! And most of all, we are lucky that she is here with us! So when you think you have it rough, just remember to never take anything for granted, even the small stuff :)

New O Pictures

These were taken the night before her 3rd surgery (in the hotel room!) with the dressing on.

This was a few hours after surgery.

This was 3 days post surgery (the incision was still nicely closed up).

These wer taken last night (1 month post surgery). The incision has opened at the very top and 2 places towards the bottom. The greenish part is the Gortex patch. The left part (well her right side) is very dry and flaky and we're not really sure why. We're hoping it's not a big blister because that would really suck!

Picture time!

And the story continues....

So remember how I said that after this past surgery we would not have to do belly dressings anymore? Yeah, so much for that. The Monday after her surgery at about 3 am she woke up crying so I went to give her a bottle and saw that she was SOAKED. I thought she had peed out of her diaper, but then realized it was coming from her belly. I got her out of her crib and layed her on my bed and there was GOOP everywhere. Her incision was draining. So I called the surgeon on call at CHP and we ended up taking her to our local ER at 4 am. They did a wound culture and he said everything looked ok. There were no signs or symptoms of an infection so to just keep in covered and call her surgeon in the morning. Just our luck, her surgeon has been on vacation this week. By Tuesday evening the incision had started to pull apart and we could see Gortex underneath (same as last time, except this time it wasn't SUPPOSED to happen). By Thursday morning a spot had opened up where there was no Gortex underneath and it was just her tissue popping through (BTW, by this point I had called Children's 3 different times). So I called again and that Friday we made a semi-emergency trip to Pittsburgh. The surgeon that we saw said it looks OK and we just have to be very careful that it doesn't get infected. We have to watch the bottom part that is just her tissue to make sure no intestines are coming through. REALLY?! THAT IS JUST GREAT.

So then we saw her surgeon the next Thursday and he said everything was fine. He said it obviously wasn't the most ideal situation because we didn't want it to come back open, but that it was ok. We just have to dress it again. We are putting wound gel on it (the same stuff we used at the very beginning) and the open spots are starting to grow some new skin! YAY!

2 weeks ago we had to do a stool sample because we thought she had some blood in there. We never heard back from them so apparently it wasn't blood. We are guessing that it was her antibiotic that was making it a funny color.

This past Tuesday we had to take her to get another trach culture. She had been coughing alot. And with coughing always comes more puking. I didn't get the results (I forgot to call today!) but they put her back on the Ciprodex drops in her trach and Omnicef (antibiotic).

Our next appointments aren't until June. We have NO appointments in May!!! We see her surgeon and Cardiology on June 2nd and then we will be staying over because she has a bronchoscopy which is done in the OR on June 3rd. At her last appointment with her surgeon he brought up the idea of giving her a g-tube. Definitely not what we wanted to hear. He said if she could have gotten one before, that he would have been pushing for it a long time ago. I agree that an 18 month old should not weigh 14 lbs. 14.5 oz (which is what she weighed yesterday YAY!). But all of her therapists agree that her weight and eating (or lack of) is not affecting her development. She is starting to walk!!!! She took 35 steps the other day and it starting to let go of things to walk to me. She is also signing like crazy. She has about 15 signs. She started saying please and thank you, mommy, daddy, Fiona, Zeus, swing, sleep, and lots more! She saw herself in the mirror the other day and signed Fiona! She loves being outside and tells me when she wants to swing. And last night she told me that she wanted to go to sleep.

Hopefully I can update more than I have been lately :)

Surgery Update

Surgery went very well! Her belly is tiny now! Even though the surgery went well, everything else was a mess. The hospital was so full and she has to be in the PICU because of the ventilator. Well the PICU had no beds available. So she was stuck in the PACU (recovery area) overnight, which not only sucked for her, but for us too. The PICU has seperate rooms, but the PACU is just one big open area. No privacy- just curtains, crying, screaming kids coming out of surgery, noisy, cramped, no t.v., etc. It was awful. She was in a lot of pain and was on morphine until yesterday afternoon. She got a fever during the night on Wed, but luckily went away by yesterday morning. Since she wasn't actually up in the PICU (but was being seen by the PICU doctors since that's where she SHOULD have been) it was like pulling teeth to get any answers. She was doing better by early afternoon yesterday and was eating and switched to Roxicet for pain instead of morphine. But they still made the decision to keep her another night without even talking to her surgeon. He is the one that should make all the decisions. So we finally got to talk to him at about 6 last night and he said that he was going to keep her until this morning, but because of our sitution (being stuck in the PACU) he would let her leave last night. So the good news is that we are home!!She is still in alot of pain and is kind of in and out of it from the pain meds. She didn't sleep well last night, which means neither did I! I washed her up and Nana came to visit which always makes things better! She is very stiff and her belly is a little bruised. But we finally got a couple of smiles out of her! It will probably be at least a few more days until she is back to normal.

Thanks for all your thoughts and prayers, we really appreciate it! I will add some pictures later!

T minus 2 days!

I can't believe it is almost time for another surgery! Like the past 2 times I am freaking out for the few days before! I get so anxious, nervous, overwhelmed, etc. Right now I should probably be packing, but I am blogging instead haha! I KNOW that everything will go fine. I have complete faith in her surgeon. We are so lucky to have him because he is awesome. Like last time I am more worried about how she is going to be post-surgery. Last time I was not even allowed to move away from the side of her crib without her crying. She didn't even want daddy (poor Tom!) she only wanted me and I couldn't even pick her up until the next morning. She was definitely alert and knew what was going on and probably will be even more so this time. It is really hard to keep a 1 year old entertained while laying in a hospital crib! We are going to be staying overnight again the night before like last time. Yay for another mini vacation :) We won't know what time we have to be there until tomorrow sometime, but I will keep everyone updated. Please keep her in your thoughts and prayers on Wed!!

Good News or Bad News First?

Fiona and Mommy play time!

Just being goofy!

Standing up playing like a big girl!

Happy St. Patrick's Day!

Bonding time with Daddy!

So we ended up getting an appointment with ENT last Tuesday instead of waiting until April.

Here is the bad news: She is not ready to get her trach out. She apparently has tracheomalacia. It is a "floppy airway"- or her airway collapses. It can either be congenital (she was born with it) or acquired (it happened from having the trach in for so long). We were so disappointed when he told us that she wasn't ready that we didn't even ask any questions. Stupid us because now we have tons of questions. We have no idea if hers in congenital or acquired. He mentioned it at her appointment in Jan, but acted like it was no big deal. But he didn't mention it after her scope in Dec. He said everything was fine. So we have no idea. If it is congenital there is a chance that it will get better on its own with time. If it's acquired there is a good chance that she will need surgery to fix it. Just what we need right? Please keep your fingers crossed that it fixes itself! She will have another scope in the OR in June to see how it is progressing and we will go from there. In the mean time we are thinking about getting a second opinion.

Here is the good news: We also saw her surgeon and he said she is ready for her next surgery! It is scheduled for April 13th! We can't believe it is so soon. Two weeks from today! He is hoping to get it mostly flat this time! He will also be replacing the piece of Gortex that is in there with a new piece and he hopes to be able to cover the whole thing in skin (because right now there are exposed areas of Gortex). That means we won't have to put a dressing on it anymore! And it shouldn't stink anymore, yay!

More good news: She is now signing a few words consistently. She says "more", "hat", and "dog". She is getting very good at walking (with assistance) and we are working on only holding on with one hand. She can now roll from her back to her belly and push herself the whole way up to sitting. Which is amazing because it takes a lot of strength to do that! We are also working on getting her to pull herself up onto the coffee table/couch. She cruises very fast around them now. We can't leave her anywhere now. We are so used to having an immobile baby! Well not anymore! She has learned how to do so much in the past couple months and is progressing very well.

Weight is still an issue. She was up to 14 lbs. 1 oz. the last time I posted. She is now back down to 13 lbs. 13 oz. She fluctuates a lot. Mostly depending on how much she throws up. We will be putting her on Pediasure 1.5 soon. The regular Pediasure that she gets now has 240 calories per bottle and the 1.5 has 350 calories per bottle. We really hope this helps because if it doesn't we don't know what we are going to do. I am going to have to get her 3-6 month clothes out from last summer for spring (if it ever comes)!

P.S. This was for you, Shannon :)

UGH!

We couldn't get into see Pulmonology and ENT until April 19th. They will be determining if they think she is ready to get her trach out. And it seems like that day will NEVER come! I was really hoping to get in sooner because of all the throwing up she is doing from coughing. But they can't get us in any sooner because we have to see both of them at the same time. We are just so frustrated with suctioning her every 15 minutes and her throwing up 5 times a day.

But despite throwing up that much she has been gaining a little weight and has finally hit 14 lbs! She was 14 lbs 1 oz the other night when I weighed her! She has also been chugging right along learning how to do new things. She can now roll from belly to back, scoot backwards on her butt, turn around in a circle while sitting, and push herself from crawling position to sitting! She has figured out how to do so much in a short period of time!

Yesterday was 1 year since we brought her home! HAPPY 1 YEAR HOME TO FIONA!

24/7 Mom Contest

Hey everyone! I just entered a Ester C's contest called 24/7 Moms. Just wondering if you could take the time to go vote for Fiona and I?! We have alot of catching up to do haha! Thanks to everyone who votes :)

http://ester-c.dja.com/pages/viewMedia.php?id=2135

New O Pictures!

I have shown some of these before, but I wanted to show the progress!
This was 3 days after she was born.

The night before her 1st surgery.

4 days after 1st surgery.

Before 2nd surgery

5 days after 2nd surgery.

Last week :)

Laughing Out Loud!