YAY for gaining weight!

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!!

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

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!

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...

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?!

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!

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!!

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...

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?!

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!

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!

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!

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!!

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

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!!

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!

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...

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?!

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!

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!

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!

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!

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!

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!

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!