10 months!!

Fiona is 10 months old today!

I will be sure to update tomorrow when we know what time we have to be at the hospital on Wednesday. My guess is that it will be around 7 or 8, but I will let everyone know!

T minus 3 days!

I can't believe Fiona's surgery is coming up so soon. It seems like this past month since I scheduled it has gone so fast! Everyone has been asking me how I feel about it. It is hard to put into words. Deep down I know everything will be ok, but I just can't help thinking about everything that could possibly go wrong. I am excited to see how much smaller it will be afterwards, but I don't want to see her in pain. We don't think the surgery on her O will hurt that much because we don't think there are that many nerve endings in that skin. But the hernia surgery will most likely hurt alot.

We Had to Call 911 Again

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

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

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

She is back to her happy little self!

TEETH!!

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!!

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!!

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

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!

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!!

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

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!

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!

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!