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.