Fiona Jane

Happy Omphalocele Awareness Day!

2012-01-31T00:29:00.004-05:00

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!

My how time flies!

2012-01-29T23:26:00.002-05:00

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!

2011-12-28T00:23:00.000-05:00

Fiona is 2!!

2011-11-23T00:15:00.000-05:00

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!

2011-11-08T14:01:00.003-05:00

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!

2011-11-08T13:54:00.003-05:00

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?!

2011-09-20T13:16:00.003-04:00

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!

2011-07-21T16:56:00.002-04:00

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?!

2011-07-19T14:55:00.004-04:00

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...

2011-05-30T20:05:00.002-04:00

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

2011-05-13T20:27:00.005-04:00

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!

2011-05-13T20:15:00.005-04:00

And the story continues....

2011-05-13T19:49:00.002-04:00

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

2011-04-15T16:53:00.002-04:00

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!

2011-04-11T14:01:00.003-04:00

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?

2011-03-30T20:27:00.004-04:00

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!

2011-03-09T11:58:00.002-05:00

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

2011-03-01T15:20:00.002-05:00

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!

2011-02-22T15:17:00.005-05:00

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!

2011-02-10T21:45:00.002-05:00

Surgery

2011-02-09T22:28:00.004-05:00

Fiona did amazing with her surgery! We had to be there at 7:30 Wed morning. They took her at about 8:45. This was the first time that she ever cried when they took her from me and I was so sad! We were suprised when Dr. Burns came out to talk to us at about 10:00! This surgery was as involved or as invasive as the 1st one so she didn't get the same kind of pain medicine. She was already awake by the time we got up to the PICU to see her. She was NOT a happy camper though! She has been pretty clingy lately and being tired makes it worse. Well apparently having surgery makes it 10 times worse! The poor thing cried if I even walked away from her crib. And cried every time someone came into the room, even if they weren't touching her! She had to get an echo done while she was there and he came to do it that night. She was not very happy about it. She finally settled down a little and just closely watched everyone that came into her room, even the cleaning people! She was much more alert this time. And more aware of whether we were there or not. We had to wait until she was asleep to even go eat dinner. They let her eat a few hours after she woke up and was right back to eating normal (normal for her!). She had a lot of her NICU nurses come to visit her. She was showing off for them! She did so well with her pain and eating that they let her leave on Thursday! We couldn't believe it when they told us she could go home. We thought we would be there until at least Friday. She was still an extra bit clingy after we got home, but other than that she was right back to her happy, crazy little self! Her O is now about 1/4 of the size that it used to be. It doesn't stick out like a big ball anymore. It is just more of a bump now. Like she just ate too much, haha! We are still not sure how many more surgeries it will take. He is thinking probably 2. The next one he will try to get it all flat and replace the 2 pieces of Gortex patch with 1 solid piece. And then wait a little while for her to grow and the last surgery will be to fully close her abdominal muscles. We have a check-up with him next Tuesday and I'm sure he will be impressed with her like he always is!

She has been doing really well with her speaking valve and the cap. She can make noise now even without anything on. It's so funny to watch her because she knows she has to take a deep breath and then pretty much yell for anything to come out!

I will try to post the video of her laughing and the new pictures of her O soon!

Baby Steps!

2011-01-30T22:41:00.005-05:00

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!

2011-01-11T15:21:00.002-05:00

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

Smarty Pants

2011-01-10T20:11:00.003-05:00

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!

2010-12-26T07:22:00.003-05:00

Merry Christmas!

2010-12-26T07:11:00.003-05:00

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!!

2010-11-21T22:06:00.003-05:00

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

2010-11-16T22:36:00.004-05:00

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...

2010-11-09T21:03:00.002-05:00

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!

2010-10-31T23:18:00.004-04:00

Lots To Catch Up On!

2010-10-26T22:21:00.005-04:00

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?

2010-10-06T20:48:00.002-04:00

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)

2010-09-27T20:17:00.008-04:00

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!

2010-09-26T11:27:00.002-04:00

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!

2010-09-24T10:36:00.002-04:00

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

2010-09-23T11:56:00.002-04:00

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

2010-09-21T20:30:00.002-04:00

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!!

2010-09-20T15:01:00.003-04:00

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!

2010-09-19T17:41:00.002-04:00

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

2010-09-15T22:38:00.004-04:00

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

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

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

She is back to her happy little self!

TEETH!!

2010-09-07T22:00:00.003-04:00

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

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

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

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

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

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

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

9 months!!

2010-08-29T22:11:00.002-04:00

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

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

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

Surgery!!

2010-08-19T19:00:00.002-04:00

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

Good News and Bad News

2010-08-10T21:42:00.004-04:00

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

"Daddy is letting me feed myself peas!"

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

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

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

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

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

Pictures!

2010-07-27T22:05:00.004-04:00

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

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

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

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

Fiona in her pretty dress at the wedding!

Sucking her thumb! I think it is adorable!

This is how daddy puts her to bed, haha!

8 Months!!

2010-07-27T21:44:00.004-04:00

Fiona was 8 months old on the 20th!

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

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

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

Her O is FINALLY ALL SKIN!! YAY!!

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

Appointment Update

2010-07-03T23:59:00.004-04:00

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

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

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

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

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

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

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

7 months!

2010-06-26T21:44:00.003-04:00

I realized that I never put up her 6 months picture!

I was helping Tom stain the deck and Zues was babysitting Fiona! haha

She fell asleep after 2 minutes in the stroller!

Last Sunday (the 20th) Fiona turned 7 months! I can't believe it! Technically today she should only be 5 months (which is her "adjusted" age). Her PT says that she is on target for all 3 and 4 month skills except for putting weight on her legs. She really does not like to do that. She pretty much hates that and tummy time. We can only get her on her tummy for about 3 or 4 minutes at a time before she really starts crying. That is usually the only time I see real tears from her and it is so sad! But before she gets mad she does really good at holding her head up.

She has been sucking on her fingers like crazy lately. And the other night she was sucking her thumb! She started putting anything she gets ahold of into her mouth, including her bib! I have no idea why because it can't taste that good! We have started to have to keep her bib on her for most of the day to keep her from pulling at her trach. She is such a stinker and loves to pull at it for some reason. The other day she had it half way out. I have no idea what we are going to do in another few months!

She is getting really good at her hand-eye coordination. She loves to grab those link rings. And she has even started to hold onto her bottle. Next step is getting her to hold it by herself. Although when she holds onto it herself she just likes to play with it and pull it out of her mouth.

We took her for her second walk the other day. We used the regular stroller this time. I can't remember if I mentioned this before but we have this "stroller" called a Kid Cart that is specifically made for babies like her. It has spots for the ventilator, battery, oxygen tank, meds/feeding pump. But she doesn't fit in it very well. She is too small and gets herself in really awkward positions and she just doesn't look comfortable. It also makes her look 10 times sicker than she is. So we just found a way to fit everything into the regular stroller and it worked well!

YAY for gaining weight!

2010-06-19T19:15:00.002-04:00

Well Fiona has had her NG tube out for 2 1/2 weeks now and is doing awesome! She got a weight check yesterday (because her nutritionist wanted to make sure she was gaining weight) and is now 12 lbs 3 oz! She is gaining really well! And *knock on wood* I think we are past the point of even thinking about putting the NG tube back it! YAY! One less thing we have to worry about now!

I finally got ahold of her Pulmonologist the other day (after trying 5 times) and she has us turn down 2 of the settings on her ventilator! We went from 26 to 22 breaths per minute and from 22 to 20 on the pressure control. Everyone keeps asking me how long she is going to be on the vent. And honestly the answer is NO ONE KNOWS! I hope no one takes this the wrong way, but I get kind of tired having to tell people that over and over haha! Here are her setting right now: Breaths per Minute- 22, Pressure Control- 20, Pressure Support- 12, PEEP- 5, and Insp. Time- .08. I really don't know what the settings have to be at for her to get off of it. I know that in the NICU the BPM had to be 20 or less for them to take her off. But everything else has to go down too. I THINK that the Pressure Support and PEEP should both be at 0. So she still has a ways to go. We have to get a blood gas (which she hasn't gotten in a long time!) on Monday to see how her CO2 is from these changes we made. We see Pulomonology again on the 29th and if everything is good they will make some more changes. She also wants to take her off the vent for 5 minutes and see what happens. I don't think she is going to last the whole 5 minutes though.

In other news we are going to start having a Speech Therapist come in once a week to work with her. Like we don't have enough people here already! I'm not sure what they are going to start out doing, but eventually we will be teaching her Baby Signs! I am really excited about this!

Getting Big!!

2010-06-07T17:37:00.003-04:00

First time in the grass!

Splashing around in the pool!

Taking a nap with daddy!

First time sitting up like a big girl in the bumbo!

"HUH? Are you talking to me?!"

Miss Fiona weighs in at 11 lbs. 7 oz. now!

So here are updates on things since the last post: We tried 2 weeks ago to take Fiona's NG tube out because she was doing so well eating from the bottle! She actually did really well eating but then starting throwing everything back up. She couldn't even keep down Pedialyte, so we had to put it back in. We left it in for the 5 days until it was time to change it again and she has had it out since last Tuesday! She is doing awesome eating! Before she was getting fed 65 mL every 4 hours. Now we are just kind of feeding her whenever she is hungry and she is sometimes taking 70 or 80 at a time. Last night Tom even got her to take 100 at one feeding and 90 at another! Her nutritionist doesn't know that the tube is out yet. I am kind of nervous to tell her because some days Fiona doesn't get exactly everything she should. But we saw her surgeon last week and he said that as long as she is still gaining weight that we shouldn't worry about it. He told us to start putting cereal in every bottle just to give her some more calories. Keep your fingers crossed that it stays out this time! I am so happy that we have one less thing to worry about right now.

So when we saw the surgeon he was very impressed with the rest of the skin growth on her O. She has one tiny tiny spot left to cover over and then it will FINALLY all be skin! He told us to start putting lotion on the rest of it to make it nice and smooth, haha. He is overall so impressed with Fiona and how she is doing. He told us at least 5 times that she looked great! We're not quite ready to start putting things back in yet though.

We also saw Cardiology that day and that appointment went well too! The doctor said that on Fiona's list of problems that her heart is at the bottom! It doesn't look like there will be any heart surgeries in the future, YAY! They just need to keep an eye on her because sometimes when there are lung problems it can start to affect the heart. But they said there is still a very good chance of both of her holes closing on their own!

She is doing awesome with OT and PT. She is holding her head up pretty good now. Still not quite where she should be, but much much better! She is constantly eating her hands and fingers and started reaching and grabbing for things with both hands. She is always so happy and smiley! She is such a good baby!

Doctor Update

2010-05-13T17:31:00.003-04:00

This is Fiona sleeping in her new Nap Nanny. It is wonderful. It keeps her elevated while she is eating. But she likes to sleep like a goofball with her face smooshed up against the side and feet over the side!

Getting warm after her bath!

Having fun splashing around in the bathtub!

Well we saw Surgery, Pulmonology and ENT a couple weeks ago and everything went well!

At the surgery appointment we got some interesting news. Fiona will not be having a major surgery anytime soon! We will be using the "compression method" to fix her O. Once her O is completely skin (it is getting there!) we will wrap it every day with an Ace Bandage (or something similar) just tight enough that it is putting some pressure on the O. The pressure will slowly start to push things back in. The downfall to this method is that it can take up to 3 years to complete. But it is the least invasive and we are thrilled that Fiona will not have to have a major surgery to put things back in. She will have to go every so often to that they can cut part of the skin off and sew what's remaining back together so that it keeps getting smaller. When everything is back in then she will have to have surgery to close the abdominal muscles. We have a new cream that we are putting on the O to get the rest of the skin to grow. It grew really fast a first, but has slowed way down. I guess what happened is that the edges healed so her body stopped trying to fix it! This new cream is supposed to get rid of all of the dead skin cells and regenerate the skin growth. Dr. Burns also put Fiona on Zantac because he thinks that the NG tube might be causing some irriation in her stomach. Overall he was very impressed with her growth and weight gain and has no doubt that she will be just fine! He also told us that he was one of the very few doctors at the beginning that thought that she would make it more than 2 weeks. Crazy.

The ENT doctors said that everything looks good with her trach and stoma. She will have to go back in July to get a scope done so that they can take a closer look.

The Pulmonologist said she looks great! They turned her BPM (breaths per minute) down to 26 (from 30). She said hopefully she tolerates it and they can start turning other things down and we can get her weaned off. We still have no time frame for this... it all just depends on what her lungs can tolerate.

We don't really have a reason for her throwing up. We think she might have been getting too much at one time. We have been trying to mess with her feeding schedule ever since and have had more episodes of throwing up. She was throwing up all last week. Right now we are feeding her 65 mL every 4 hours. She is tolerating it, but we know she is not getting the amount of calories that they want her to have. We are trying to find a balance between her getting enough calories and not throwing up! She is still not doing very good with the bottle. All last week she really fought every time we tried to put the bottle in her mouth. This week she has been a little better at least letting us put the bottle in her mouth, but still doesn't take much.

Today she went to Dr. Gorlowski (the Pediatrician) for her 6 months shots. I can't believe she is almost 6 months. And I hate having to watch her get shots!

She is smiling and laughing (although we can't hear it) a lot now. She is always chewing on her hands and fingers. Tom thinks she might be getting a tooth. I hope not, we don't need to deal with that yet!

We will be seeing Surgery again, and Cardiology and Urology soon. We're hoping to get good news from all appointments.

HOME!

2010-04-26T20:53:00.004-04:00

Well, Fiona has been home from the hospital for over a week now. They never found any infection or anything so that's good! She was 5 months old on the 20th! Crazy how fast things are going! We talked to one of the surgeons while we were in the hospital and he said that we don't need to put a dressing on her O anymore! So while we were there we tried to leave it bare. Besides it being weird because we had been doing it for so long, it just wasn't working. At one point I sat her up to play with her and then when I layed her back down part of the skin peeled off. The surgeon just told us to put a non-adhering pad on it (which is what we usually use) but to leave it unwrapped. Well then it was just getting junk all over the place and making all of her clothes all gross! So we decided that we needed to keep wrapping it and have been wrapping it since we have been home. He also told us that we could put her in the bathtub! We were SO excited about that! She was in need of a good bath! So Sunday night when we got home from the hospital Fiona got her first real bath. She was really mad for the first couple minutes but then loved it! We have been giving her a bath about every other night and she is getting really good at splashing and getting Daddy wet!

We have been trying to change her feeding schedule around since that is what landed her in the hospital in the first place. While she was in the hospital we went back to feeding her 65cc every 3 hours with 24 cal/oz formula. Last Tuesday we changed it to feeding her 70cc every 3 1/2 hours with 26 cal/oz formula. On Friday we went to 75cc every 4 hours of 26 cal/oz formula (normal baby formula is 22 cal/oz). She was fine on Friday, but then Saturday night at 3 am she threw up (while I stayed up with her all night, which is another story in itself). Then last night she threw up after her 7 pm feeding. This morning she threw up after her 3 am, and 11 am feedings, and then again after her 3 pm feeding. We're not really sure what is going on. It might be that the 75 is too much for her at one time, or she might not be tolerating the jump in calories. Luckily we go to Pittsburgh tomorrow for appointments with Surgery, Pulmonology, and ENT. So besides figuring out why she is throwing up, we should get some answers about everything else too. I will try to update with what we find out in the next couple days!

All Too Familiar...

2010-04-17T14:29:00.002-04:00

Well the inevitable happened... Fiona ended up in the PICU at Children's on Wednesday.

So here's what happened: As I mentioned before we changed her feeding schedule and she was getting fed continuously throughout the night. We had been trying to get ahold on the Nurtritionist because she had spit up a couple times and we knew that she was getting too much for her little belly to handle. Well Wednesday morning at about 3am she spit up, ALOT. She ended up aspirating (breathing into her lungs) the spit up. It is one thing for babies to aspirate while they are eating, but to aspirate puke is much worse. So our nurse suctioned it all out, we changed her trach and ties, and got her all cleaned up. We dressed her and wrapped her up, but for some reason she just wouldn't warm up. Her temp was 96. So I called the dr. and he said to take her straight to the ER. I AM SORRY to anyone that reads this that works at ERHC and no offense to you, but we will never take her there again! I understand that they don't see things like this, but it was all just a mess. It took like 10 people to get an IV in her. They poked both arms, both legs, and finally put it in her head. Poor little thing, I felt so bad for her.

Anyway... When we got there her temp was 96.1 and her white blood cell count was high so they decided to life flight her to Children's. When we got here her WBC count was still high, but a little lower, but they were still worried about infection. She was started on antibiotics and had LOTS of blood work done. She also had an EKG and an echo just to make sure nothing was going on with her heart. They also did a chest x-ray to check her lungs for any sign of infection.

All of her blood cultures came back negative, her EKG and echo were normal (for her), and the chest x-ray showed a little irritation, but no infection, so all good news!

She was made NPO (no food) when we got here so she was started on IV fluids. They ended up having to stop her feeds a few times because she was spitting up and even stopped it this morning because they thought her belly looked bigger. But as of noon she was back up to full feeds and doing well.

Keep your fingers crossed that we can go home tomorrow!!!

1 month?!

2010-04-13T19:42:00.003-04:00

As of last Thursday, we have been home for 1 month! Wow, I can't believe the days go by so fast!

Fiona is doing good! Her eating is still so-so. The new feeding schedule has been helping a little during the day. We can tell now that she is getting hungry (sometimes, not at every feeding though). But at night we are having some issues. One night she ended up spitting up about 1/3 of her whole feeding, which is alot, about 100 cc. A couple other times she has spit up a little here and there. But the past few nights our nurse has noticed that she just has formula sitting in her mouth. She doesn't get bottle fed at all during the night, just through the tube, so having any in her mouth is weird. We're figuring that her belly is getting so full that it is just backing up the whole way into her mouth, which I'm sure is not a good thing. I tried to call the nutritionist today but of course no one called me back yet. UGH, so frustrating!

Her breathing status is also still so-so. She is back on oxygen. We had her completely off for about a week and then put her back on. But everyone has said that it is something that is going to fluctuate.

We had a day out on Sunday. I went to Ashley's ( Tom's brother's wife <-- haha) baby shower. Tom brought Fiona down right at the end when there were only a few people left. I am still a little hesitant to have her around big crowds of people. And I don't like everyone touching her. I need to make her a sign that says, "Please keep your germy hands off of me!" haha. Then we went over to Uncle Josh and Aunt Ashley's house for awhile. We can't wait til Adelyn is born and her and Fiona can be buddies! We also decided that we are going to have Addie and Fiona baptized together. Fiona is technically already baptized. It was done by one of the nurses right after she was born, but we would still like to get it done in the Church. So that will be in July or August I'm guessing. That is about all of our news for now!

Her is Fiona and her cousin Adriana at my parent's house on Easter. Look at Fiona's chubby little chin, haha! And of course she was sleeping!

Fiona and Daddy sleeping on the chair last night! So cute!

Photo Shoot!

2010-04-07T20:59:00.004-04:00

Thanks to Aunt Ashley we had a mini photo shoot one night last week! Fiona didn't like it as much as we did though, haha! I am surprised that we got as many good pictures as we did because she was pretty cranky the whole time!

Happy Easter!!

2010-04-05T22:37:00.002-04:00

Yes, I know I am a day late! But we have had a busy weekend! Saturday we went to Big Poppa's (my grandpa) house for Easter dinner with my family. Then yesterday we went to Nana's (Tom's mom) house for lunch then to NeeNee and Poppa's (my mom and dad) house for an Easter Egg hunt and dinner, then back to Nana's for a little bit. While we were at NeeNee and Poppa's house she gave us a little scare. When we are out she doesn't have the humidifier like when we are at home so her secretions dry up in the trach. At 4 it was time to give her her breathing treatment which must have loosened everything up and clogged it causing her to turn blue because she didn't have enough oxygen. Luckily once we turned her oxygen up a little she was fine and I suctioned the goober out of there. We don't need any more of that!

We have a new feeding schedule! She now gets fed continuously from 11pm to 7am at 41cc/hr. We then feed her 65cc at 11am, 3pm, and 7pm. This gives her 4 hours in between feedings during the day instead of 3. It has helped a little, nothing drastic though. Hopefully OT will be able to help. I think I might look around and see if I can find a feeding specialist that we could take her to.

I think I mentioned that when we went to Pittsburgh that we got a new belly support made for her when she's in the carseat. Well it already doesn't fit. Her O is definitely getting bigger. I called the surgeons to see what they thought (actually I just talked to the nurse). She said that as long as she is tolerating her feeds and not throwing up, and still pooping that she didn't think it was anything to be concerned about. She said it's going to grow as she grows. UGH... some days it just seems HUGE and it seems like it is growing faster than she is. I am probably over reacting though!

Speaking of huge, Fiona weighs 10 lbs 4 oz now!! And she is 20.5 inches long! She is getting to be a chubby little thing. She honestly looks like the Michelin Man with her arm and leg rolls haha! She is so darn cute though!

On a side note: Tom has built a deck for us so that we can take Fiona outside now! And he will be putting a ramp on it soon so we can wheel her kid cart right into the house!

Song...

2010-03-29T10:59:00.002-04:00

This is a song I found on youtube. You might need some tissues, but listen to it. It is an amazing song!

http://www.youtube.com/watch?v=DJOSMB0QhFY

It's Sunday Already?!

2010-03-28T22:11:00.002-04:00

Fiona was 4 months old on the 20th!!

Our days seem to go by so fast here! It is crazy! I have been horrible at keeping this updated! So let's see what has happened since the last time I posted...

Last Saturday was quite a crazy day. We don't have a nurse during the day now on weekends. So last Saturday Tom got up at 7 when our night nurse left. I was kind of half sleeping but woke up to him banging on the wall. So I threw on my robe and ran out to the living room. I'm not even sure what he said to me, everything is kind of a blur because it happened so fast. But I picked Fiona up out of the crib and she was blue and limp and unresponsive. Tom had been trying to get her oxygen back up, but it wasn't working. He was getting the stuff together to suction her but then we decided that we needed to do an emergency trach change in case it was clogged. So we did that while I was holding her (pretty sure that is not how you are supposed to do it!). Sometime in there he called 911. She was trying to ask him all sorts of questions but he was trying to suction her, so he just yelled that she had a trach, was blue, and our address and threw the phone on the coffee table! So after what seemed like an eternity we got her oxygen and heart rate back up to normal. She was fine by the time the ambulance got here. That was probably the most scared I have ever been in my entire life.

We had our first trip to Pittsburgh on Friday for an eye appointment. She had been seeing them every 2 weeks because the vessels in her eyes weren't fully mature. But they are mature now and we don't have to go back for 6 months! We then went to see OT to get a new support for her O that we use in the carseat because the other one doesn't fit anymore. We're not sure if the O has gotten any bigger, but it has definitely changed shape. She slept the whole way there and the whole way home!

She has been doing really well with her oxygen requirement. Today we have had her oxygen turned completely off (so that she is breathing room air) and she is doing great with it. That might be the first thing we can get rid of! Eating on the other hand has not been going so well. She was going in the right direction and then all of a sudden stopped wanting to eat. She hardly takes anything for us by bottle now and we have no idea why. Hopefully the OT is going to be able to get her to eat.

What a Stinker!

2010-03-18T16:48:00.003-04:00

About 1/2 an hour ago Fiona thought it would be a good idea to pull her NG tube the whole way out of her nose! A couple times she has gotten her little finger in there and pulled it out a little bit and we just push it back in. But today she pulled it the WHOLE way out. And the funny thing is, she was sleeping! Just yesterday she found her face, haha. She has been touching it non stop. Even when she is sleeping! I knew it was going to happen sooner or later. I wish we could get that dang thing out of there so we didn't have to worry about it!

Yesterday Fiona had her Early Intervention assessment. They were very interested in her! None of them had ever seen an O. The things we will most be working on are her bottle feedings and strenghtening her neck muscles (although there will be other things too). She will have Occupational Therapy (for feeding) twice a week and Physical Therapy (for everything else) once a week for now. We can increase things as we think she needs it.

She got her 2nd RSV shot today. She was not a happy camper. But she was only mad for about 5 minutes and then fell back to sleep! I'm pretty sure RSV season is over in April so hopefully she won't have to get any more of those. I'm guessing that she will still be considered high risk next season so she will probably have to get them next year too.

Casey (our day nurse) and I took her for her first walk yesterday. It was so nice out! I can't believe I didn't take a picture of it though! If I had $1 for every person that gave us a funny look, I would be rich. Yes, I know, it is something that people have never seen before, but there is no need to stare and give funny looks. Ugh!

Settling In!

2010-03-14T22:40:00.002-04:00

We are definitely enjoying being home! And Fiona is adjusting very well. Her heart rate is the lowest it has been in probably a month and I think it's because she is getting comfortable here and knows that someone is not going to wake her up and mess with her or poke her all the time! She is such a happy little thing! You would think that with all of her issues that she would be mad or cranky all the time, but she's not. She doesn't cry much. The only time she really gets mad is when she has gas or has to poop, poor thing. She has been having a hard time. We think it is because she is getting too much iron. Her multi vitamin and her formula have iron in them and that is probably too much for her.

We have been hearing LOTS of sounds from her lately. I think I might have explained this before, but she has such a big leak - air goes out around the trach and up through her vocals cords and back out her mouth. It happens alot when she is sleeping because her airway is much more relaxed and there is alot of room around it. We are thinking they are going to have to give her a bigger trach at our next appointment. Which kind of stinks because then we won't be able to hear as much. But it will be better for her.

We had our first appointment on Thursday with our pediatrition, Dr. Gorlowski. So Tom and I took her out for the first time. Thankfully it was nice out! We had some issues with the battery for the ventilator, but other than that everything went well! She now weighs 8 lbs 13 oz!

Her belly is looking great. There is only a small spot that is still granulation tissue, which has been like that forever!

We have lots of appointments coming up. She has to get her regular shots and her second RSV shot at Dr. Gorlowski's. Then we go to the Opthamologist on the 26th, Pulmonology, ENT and surgery on April 27th, Cardiology on May 11th, and Urology on May 26th!

She loves her swing! She fell asleep within 10 minutes! And she loves that monkey! We use it to hold up the vent tubes and then she plays with it and holds onto it!

Priceless!

2010-03-10T17:29:00.002-05:00

this was my facebook status when we got home!

Prenatal Care: $20,000
Life Flight to Pittsburgh: $14,000
98 Days in the NICU: $300,000
Home Care Equipment: $50,000
FINALLY Having Our Baby Girl Home: PRICELESS!!!!

We're FINALLY Home!!

2010-03-10T17:10:00.003-05:00

SOOOO sorry for not being able to update! The stupid iPod would not let me post on here for some reason, and the computer at TIC had a virus!

ANYWAY... we are home!! We didn't come home last Wednesday like we thought we were going to because of some stupid paperwork and insurance b.s.! We got to stay over night with her for 5 nights in our "nesting" room at TIC. Tom and I took turns staying up with her and sleeping. It was nice being able to do that. Things have been really hectic since we have been home. We got home on Monday around 5. Tom, My parents and Toni and Boo were here to greet me and Fiona when we got here. I don't think I mentioned before that they had to bring her home in an ambulance. Just their procedure I guess. She has done really well adjusting to home. She has been sleeping alot.. I think that first day wore her out! Having nurses here is kind of crazy. For the first two days they were here 24 hours. Today our nurse left at 3 and it was the first time we have been alone with her since being home and it was so nice! Not that we don't love having company, it's just nice having just the 3 of us here (and Zues, I guess haha). We have SO much stuff! Our living room is jam packed, I don't think we could fit one more thing in here. We had to set her crib up in here so the nurses can be with her over night. Her bedroom is upstairs so that wouldn't work out very well. So besides the crib, we have the ventilator, feeding pump, 2 plastic totes for supplies, another little wicker thing for clothes and blankets, a huge oxygen tank, plus our regular furniture!

We are so happy to be home! We have lots of appointments, with our first one being tomorrow with our pediatrition, Dr. Gorlowski. It will be an adventure taking her out for the first time! Hopefully things go well!

Isn't she adorable?! One of our nurses from Children's came to visit us at TIC and brought her this outfit! Thanks Adrienne!

Pictures

2010-02-28T11:53:00.003-05:00

Playing with daddy in her new home!

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

So Close!!

2010-02-28T11:41:00.003-05:00

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

She's getting so big!

2010-02-20T23:28:00.002-05:00

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

Of course...

2010-02-20T22:58:00.002-05:00

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

Are we done yet?!

2010-02-15T15:55:00.003-05:00

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

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

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

Busy Week!

2010-02-11T20:00:00.002-05:00

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

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

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

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

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

Big Eyes!

2010-02-07T23:40:00.001-05:00

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

SORRY!

2010-02-07T16:39:00.003-05:00

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

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

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

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

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

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

Thank you!

2010-02-02T17:04:00.003-05:00

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

Getting closer to home!

2010-02-02T16:50:00.002-05:00

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

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

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

Look at those eyes!

2010-02-02T15:47:00.003-05:00

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

1-31-10

2010-01-31T19:00:00.002-05:00

We have had a busy weekend! Fiona had lots of visitors... yesterday Nana (Tom's mom), Boo, Uncle Josh, and Aunt Ashley were here. And today we had NeeNee and Poppa (my mom and dad), Aunt Amanda, Uncle Adam, Colten, Jackson, and Adriana here! The boys got to go in long enough to say "Hi, love you Fiona, bye!" They are actually not aloud in the NICU, but our nurse said it would be ok for just a minute. Colten went running out into the waiting room and told everyone, "She's pretty cool!" Haha they are so cute! Nana, NeeNee, and Aunt Amanda all got to hold her!

Fiona is now up to full feeds (17 cc/hr)! She did have a little spitting up today, but nothing they were worried about. She actually hasn't done that since she was at about 2 cc/hr, but I guess all babies spit up sometimes. They were able to wean her vent to 34 bpm today (from 36). Her O looks different every day. There is so much skin on it now! Only a little ways to go! Last night my parents got to stay in the room and watch while Tom and I changed her dressing, gave her a bath, changed her trach ties, weighed her, changed her bed, and dressed her. My dad said now my mom should know why I don't answer the phone when she calls at night! The nurse sat Fiona up while Tom changed her trach ties and I REALLY wish I could have gotten a picture, it was priceless! It was the first time she had ever sat up like that. She had the most surprised/shocked look on her face! Tonight it is my turn to change the ties. Hope I do as good of a job as Tom did! We will continue our learning/training tomorrow and it will be my turn to change the whole trach!

Tomorrow starts a new month which means we get new doctors (for some reason they rotate sections and even hospitals). Not so sure how I feel about that. We loved one of the doctors we had this past month! Guess we will just have to find another one we love!

Lots of Pictures!

2010-01-30T13:56:00.003-05:00

She had the binky in her mouth and it fell out and her mouth stayed like this!!

She is looking at Daddy's goofy face, haha!

She looks tiny in the bouncer but so cute with her little dress and socks! And we started giving her the big girl binky and she was actually keeping it in her mouth!
*so sleepy*

Lots of News!

2010-01-30T13:35:00.003-05:00

First of all, I know I am slacking on updating the blog, sorry haha!

Fiona is doing great!! They did her first trach change on Wednesday and she did pretty good with it. They did give her some morphine just because it wasn't completely healed and they didn't want her to be in any pain. They did see some puss and a little swelling when they checked it so they did some cultures and it came back that she has a staph infection. They started treating it before they even knew if it was an infection for sure, so hopefully they got it! Tom and I started learning her trach care on Thursday. Our teacher, Chuck, is great! That day we just assisted for the most part. He taught us how to suction which is not too hard, we can now do that by ourselves! He went through all of the steps of how to change it and then I held it in while he changed the ties (which go around her neck to hold it in) and then he changed it. Then yesterday he let Tom change it while he assisted him and Tom did a great job! Hopefully soon we are pros! They are planning on transitioning her to a home ventilator some time this week (whenever it gets here) because it will be what we will have at our house and they want us to get used to it.

She is doing AWESOME with her feeds. Right now she is at 15 cc/hr and will get turned up to 16 at 2pm and then 17 at 2am and 17 is considered full feeds YAY! Yesterday was her last day of the TPN (IV nutrition) because she is now getting everything she needs from the breastmilk! We're not exactly sure where we go from there. The Occupational Therapist came up yesterday morning and was very impressed with how she sucks on her binky! She did say that she's not quite at the point of being able to bottle feed but she is pretty close!

Last night we got to put her in a bouncer and she loved it! She fell asleep in about 15 minutes! We're just so glad that we can get her up and out of bed more now. Every day we are getting a little closer to getting out of here! We're hoping that after she is done with her round of antibiotics and transitioned over to the home vent that we will be going to TIC so keep your fingers crossed!

More good news!

2010-01-26T19:20:00.003-05:00

Well first of all, today was Fiona's due date! But the little stinker decided to come 67 days early (still seems crazy!)

We got some good news! If everything goes well with her feedings and vent weaning for the next few weeks they are going to think about transferring us to TIC (Transitional Infant Care). The name of the place is actually The Children's Home, but everyone refers to it as TIC. It is pretty much a mini hospital. It is staffed by doctors and nurses just like a hospital would be. But it is more of a home environment. We would be taking care of her and they are just there to help if we need it or to do things if we aren't there. Here is the link if you want to check it out:
http://www.childrenshomepgh.org/pediatricSpecialtyHospital.aspx

She is doing amazingly well with her feeds. Right now she is at 8 cc/hr! They decided to start increasing her by 1 cc/hr every 12 hours! She is having little to no residuals (milk left in her belly) which means she is digesting everything. She is also a pooping machine which is another good sign that everything is working like it is supposed to be!

She is good very well with her trach. She is much better with the pain than I would be! They only had to give her pain medicine on Friday and Saturday and since then she has been fine. It is still a little sore to touch, but that is normal. Tomorrow they will be changing it to a different brand and a bigger size. The brand they are changing it to has a little bit longer of a piece coming out of the hole and it is flexible so hopefully she won't pop it off as much! Last night she was being very cranky and every time she moved the vent tube would pop off, so Tom and I stood beside her crib for about 2 hours (maybe even longer) while one of us held the vent tube and the other held the binky in her mouth and rubbed her head, haha! She is already spoiled! The reason they are putting in a bigger one is because she has a pretty big leak, meaning that air comes out around the tube and out of her mouth. So she is not getting ventilated properly. Hopefully once they put the bigger one in they can go down on her settings a bit.

She also got her first round of shots yesterday and today...

We are hoping that at the end of this week or beginning of next that the Speech and Occupational Therapists will be able to start working with her. We would also like to get her out of that crib as much as possible! We should be able to start holding her again Thursday or Friday!

Just another Saturday...

2010-01-23T18:39:00.004-05:00

Fiona is doing good today! Her feeds are back up to 4 cc/hr. Now hopefully tomorrow they can increase it to 5. I think she is still a little sore from the surgery. She wakes up and gets cranky for about 30 seconds and then falls back to sleep! And the little stinker keeps popping the vent tube off of the trach! She doesn't have much of a neck so everything is kinda squished and her chubby little chin hits it when she wiggles around and ends up knocking it off! It's not a huge deal, we just have to pop it back on. But one of the nurses said as kids get older sometimes they will do it on purpose for attention and because they think it is funny! And I can definitely see her doing that! Even though she shouldn't be moving around too much yet, she still has to have her dressing changed every 12 hours. Tom and I were a little nervous about doing it last night, but we had a nurse that we never had before so we figured it would be better for us to do it than someone that has never done it before. It went just as it normally does with her kicking and wiggling around. Hoefully tonight we can get her washed up because we didn't do that last night... And we should be able to put clothes back on her tonight, she has been a nakey baby since her surgery yesterday!

She got to visit with NeeNee and Poppa last night and today, and now she is visiting with Nana and Great Aunt Kim!

Well other than that there is not much to report, which is probably a good thing! Hopefully things keep going smoothly from here on out!

She doesn't like when you turn the lights on, she squints her eyes like she is doing in this picture! But sucking on her binky is much easier without that tube in her mouth!

FYI

2010-01-22T14:02:00.003-05:00

I know most people have never seen a trach or how it works so here is a little diagram!

A tracheotomy or a tracheostomy is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube and is commonly done in an operating room under general anesthesia. A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs. Breathing is done through the tracheostomy tube rather than through the nose and mouth. The term “tracheotomy” refers to the incision into the trachea (windpipe) that forms a temporary or permanent opening, which is called a “tracheostomy,” however; the terms are sometimes used interchangeably.

All done!!

2010-01-22T13:42:00.002-05:00

Still sleepy, but trying to peek! AND NO TAPE!!! (except for the NG tube)

Fiona had her surgery at about 9:30 this morning. Everything went well and she is doing good! She is still a little sleepy from the anesthesia. They are giving her Fentanil for the pain, but she should only need it for a couple of days. The trach tube is a little smaller than the other tube she had in so there is quite a big leak, which means there is still air passing her vocal cords so we can hear her breathing and will be able to hear her cry! Not that we want her to cry but I will be nice to hear it! It takes about 5 days for the track to get established and like I said she won't be taken out of bed for those 5 days. Then probably on Wed. they will come change it. It has to be changed every so often (not sure how often though). Then probably Friday we will start to learn how to take care of it. We have to learn how to clean it, change it, and suction it. And what to do in an emergency if there happened to be one. There is a respiratory therapist whose job it is to teach families this stuff! Hopefully it won't be too hard to learn!

Now she can work on her eating! They are going to start her back on 2 cc/hr tonight at 6 and then if she does good with that they will put her back at 4 cc/hr in the morning. Then Sunday they will go back to increasing it every day if she is doing good. I'm not quite sure when they will be able to try bottle feeding. Hopefully it is soon though!

I asked the other day if we will be able to put her in a swing and they are not sure about it. They said that from the trach standpoint she would be fine in a swing, but they are not sure about her belly and if she will tolerate it. But I think they will probably let us at least try it when she is healed from surgery.

Tomorrow is the day...

2010-01-21T21:16:00.002-05:00

Tomorrow Fiona is getting her trach surgery. We still don't know a time because the schedule hasn't come out yet. It would be really nice to know! So just say some extra prayers for her tomorrow.

As for today, she is doing really good. Her feeds are up to 4 cc/hr and she is doing really good with it. Now that things have started moving through we are hoping that they can keep increasing it without any problems. Even though we are being very optimistic we probably should expect some setbacks. Like I said in the last post, they will make her NPO at midnight tonight and then HOPEFULLY be able to restart them soon after her surgery. It just depends on how she is handling everything. They might just have to start back at maybe 2 and if she does good then put it back at 4... no one is really sure. She weighs about 5 lbs. 13 oz. now! She is now bigger than my niece Adriana when she was born (she was 5 lbs. 9 oz.!!) She is starting to get some fat rolls, haha! YAY for fat rolls!! She has been staying awake more lately. Today she was up from 5 til 9!

I will post sometime tomorrow after her surgery and post a picture of her pretty little face without all that tape on it!

2 Months!!

2010-01-21T21:11:00.002-05:00

On one hand we can't believe it has been 2 months already! On the other hand it feels like it has been FOREVER...

More Pictures!!

2010-01-19T17:07:00.000-05:00

I love my monkey!!

I don't know if you can tell from this picture, but one of her nurses cut off the side of the binky so it would fit with the tube in her mouth! The tube used to be on the other side of her mouth so the binky has to be upside down now!

Keep the good news coming!

2010-01-19T16:53:00.000-05:00

Well we got some good news today! One of our biggest concerns was whether or not Fiona's lungs would ever be strong enough to function on their own... and the Pulmonoligist said DEFINITELY!!! It might not be as soon as we had hoped for, but eventually they will get it together and be able to work on their own without the ventilator! I'm not sure if most of you know that she will still be on the ventilator when she gets the trach. And as for the trach, she is getting it for sure. She might actually be getting it tomorrow! First they said Friday and then when they came back to the room to get our consent, they said tomorrow! But it does depend on if there are any emergencies or anything like that. Tom and I kind of have a mix of emotions right now. We certainly never imagined her having to get a trach and it isn't by any means what we WANT, but now that we know she is getting it we are kind of excited to just move on to the next step. We are excited that she will be able to move around more without having to worry about pulling the tube out, that she won't have to get mad at that stupid tube in her mouth anymore, that she will be able to keep the binky in her mouth by herself, that we will eventually be able to bottle feed her, and most importantly that we will be able to bring her home!

She got a blood transfusion today, just because her hemoglobin was a little low this morning. As for her feeds, she is doing good at 2 cc/hr today. But since she is probably going to get her trach tomorrow they have to make her NPO (something latin for "nothing by mouth") at midnight. We're not sure how long they will have to keep it off, but then she has to start all over again at 0.5 cc/hr and work her way back up. And she pooped all by herself twice today, yay! She is a stinky little one. She has had some awful gas for the past few days! Her bed is so tall and I am so short that when I have to hold her down to do the dressing change my face is right by her butt and she must have thought it would be funny to fart in my face the other night!

Like I said, we're not sure what time she will be getting her surgery tomorrow, but I will be sure to post sometime afterwards. Just say some extra prayers for her tomorrow that everything goes well!

So Cute!

2010-01-18T17:11:00.000-05:00

Beware: Pictures of the O!

2010-01-18T17:02:00.001-05:00

So you can see the skin is nicely growing up the O. It is about 1/2 way now. The green parts are the granular tissue and underneath that you can see the new skin forming. I think it's amazing what our bodies can do (even when they screw up!) No one is exactly sure what the litte purple parts are. The surgeons think it might be poop working its way through there. Tom thinks they are bruises which would make sense since the skin is so new and fragile. But either way it doesn't seem to bother her so that's good!

Tom is holding her down so I can change the dressing on it. We do that entirely ourselves now at 8 pm and the nurse does it at 8 am (because we are not up that early). She actually likes being held like that most of the time! After we are done changing the dressing then we give her a bath and change her bed and clothes. (Tom gave her a bath and changed her diaper for the first time the other night. It was so cute because he had to ask "how exactly" he was supposed to wipe her!) And then we usually hold her for awhile!

In higher spirits!

2010-01-18T16:36:00.000-05:00

Tom and I were pretty down in the dumps last week after talking to one of the surgeons. She was just not the most positive person in the world. They all have their ways of telling us stuff, but she was just not very supportive I guess. To quote my friend Sarah (whose O baby Aidan is now 3!) - "Try not to listen to that one doctor. Unfortunately, too many are unaware of the reality, that more and more O babies are surviving, that it is not a death sentence. It's really frustrating that some doctors are still so in the dark about it. But the truth is that parents like us need to advocate, and prove that our children are survivors. So just hang in there, and keep on teaching them that!"

But Fiona is doing good today (and has been for the past few days). They weaned her pressure support from 12 to 10. They also increased her feeds to 1.5 cc/hr. She hasn't pooped in about 4 days so we are really hoping for some poop soon, haha! We're still not sure what time our meeting is tomorrow. The ENT (ears, nose, and throat) doctors are supposed to be there too. Even though she has been doing better the past few days everyone is still pretty sure she is going to need a trach. And I guess they are thinking maybe as early as some time this week. They gave me some info on getting her first round of immunizations since she is coming up on 2 months already! But her nurse today said they want to hold off on them until they at least know what is going on with the trach because if she did have some kind of reaction they would need to know whether it was from one of the shots or from her surgery. We did find out that after she gets the trach she won't be able to be out of bed for 5 days :( They won't even be able to weigh her during that time. But the good news is that after those 5 days she will be able to be much wigglier (haha) than she already is. She will be able to move her head around more. And also the Occupational Therapists will be able to start working with her. Hopefully it will get us on the right track to getting home! I will post sometime tomorrow after our meeting.

New Pictures!!

2010-01-17T18:40:00.000-05:00

She was finally awake when we held her!

Tom being a dork!

First Post!!

2010-01-17T18:04:00.000-05:00

At some point I will have to add everything I have been writing in a notebook since the day she was born, but for now I will just start with today and go from there! This will just be much easier than trying to cram everything in my Facebook status!

As I am writing I might use words and terms that most people aren't familiar with so I will try to explain them as I go.

Fiona has been pretty good today. She is at least staying stable for now. A lot of people have been asking me what they are going to do about her belly. As of right now the surgery on her belly is not even in the picture. They are much more worried about her lungs at this point. Obviously her belly is an issue, but it is not causing any problems at this point. It is nicely growing skin (which it is supposed to do). Eventually the skin will cover the whole thing. It is about 3/4 of the way up right now. The rest is covered with granular tissue which is what is needed to grow skin.

I will try to explain her vent settings. Right now she is on 36 bpm (breaths per minute/ how many breaths the ventilator is giving her). She also breaths on average 20-30 breaths per minute on her own. So her total respiratory rate is usually between 50 and 60. She is also on something called pressure support. I found this nicely described in another blog I have been reading. Our lungs are kind of like balloons. When the balloon is already filled up a bit, it is easier to put more air into it than when it is completely deflated. So what the pressure support does is keeps a little air in her lungs so she doesn't have to work so hard to take her own breaths. Each time they have tried to wean her off of the pressure support she does not like it at all. That is what has caused some of the setbacks. We are meeting with the Pulmonologists (lung doctors) on Tuesday to see if they can tell us anything about her lungs. The thing that sucks is that the ventilator is a viscious cycle. She needs to be on these high settings to keep her alive, but the longer she is on it, the more damage it does. Being on a ventilator long term causes CLD (chronic lung disease). Apparently your lungs keep growing until you are about 5, so her lungs will constatly be trying to grow AND heal themselves at the same time. Getting the trach will not really help or hinder the situation in anyway. It is just a more secure/long term solution than having the tube shoved down her throat. She is getting to the point that she realizes it is in there and gets mad at it. She has already pulled it out on her own once and we don't want that to happen again! She is a feisty one!

As for her feeds... she is currently getting 1 cc (or ml)/hr. A cc and a ml are the same thing. So she gets 24 cc's in a day, which is not even quite an ounce. She is doing ok digesting that, it just takes her longer than it would a normal baby. The rest of her nutrition comes from the TPN. It has all her vitamins, minerals, fats and whatever else she needs. They will lower that as they increase the amount of breast milk she gets. She would need to be taking about 50 cc's per feeding (every 3 hours) to be considered at full feeds. Once she gets the trach we should be able to work on bottle feeding (HOPEFULLY!) It is a good sign that she likes to suck on a binky so she doesn't lose that sucking reflex.

Well hopefully that gives everyone an idea of what is going on. I will try to update at least every other day (since I have to go to the library to use the computer) and post some pictures and videos! Feel free to leave comments and ask questions. I will try my best to answer them!