We Are Home!! (And O pictures)

WE ARE HOME!! YAY! We got to come home yesterday. We got home around 7:30 pm. We are so glad to be home! And Fiona is doing much better today. She is back to smiling a lot! Not QUITE back to her normal self, but I don't blame her, I'm sure her muscles still hurt.

Ok, so I decided to put up all of the picture that I have of her O from birth until now. I know a lot of people are curious as to what it looks like. And I also hope it might help with people doing research on Omphaloceles and the "paint and wait" method. I could not find much information, let alone real stories about Omphaloceles and especially the "paint and wait" method. Hopefully these picture will help parents see what the progression of skin will look like and how long it will take. Please don't go any further if you are grossed out by stuff like this!




CAUTION: O PICTURES BELOW!!!

These 2 were taken 3 days after she was born. You can still see through the sack. The darker parts are the intestines and I think the lighter part is her liver.

This one was taken at about 5 weeks. (they were putting the wound gel on it)

These 2 were taken at about 1 month.

These two at 1 1/2 months.

These two at a little over 2 months.

These three at about 3 months.

These two at about 7 1/2 months.

This was the day before her surgery. We were comparing the size to her monkey!

This was 2 days after surgery.

And this was when we got home last night (4 days post surgery). Again comparing the size to her monkey! You can see how the base is much wider now.

The skin is black because it's blood supply was cut off. It wasn't like normal skin that has it's own blood supply, so when it was seperated from the organs it lost all of it's blood. It will now probably peel off and the O will have to grow new skin again like it did at the beginning.

Coming Back to Life!

They took the NG tube out about 4 pm on Friday, but still wanted to wait a little longer to feed her. She got to eat for the first time yesterday morning! She took about 30 cc of Pedialyte for the nurse and then about 10 more for me. Since she did so well with that they said to go ahead and give her some formula. It always takes forever for them to bring up her formula from the "Formula Room" because they have to mix it so we just used what I had in the diaper bag. I have never seen her so excited to see a bottle! She ended up taking about 80 cc from that bottle and then eating 2 more times yesterday and kept it all down! At home we had been having issues with throwing up for awhile but *knock on wood* she hasn't thrown up here yet! It was always so hard to get her to burp and if you didn't get her to then usually after a couple hours she would burp, gag, and throw up. Well yesterday she was burping like a champ with no effort at all! What a thing to be proud of, haha! They shut her nerve blocker off at around 11am yesterday and she was doing really well tolerating the pain so they took it out around 4pm. After that she was kind of fussy all day and would cry every time you tried to move her or she would cough. So we decided to try just Tylenol first to see if that would help. She was still very fussy and uncomfortable and was crying a lot while I was holding her. I put her back in bed to get her ready for bath time and we turned on the lights and saw that her whole left side was bruised. Well that was obviously why the poor thing was in so much pain. So we washed her up and the nurse gave her some Morphine before we attempted to change her belly dressing. It worked so fast that you could tell she immediately felt better. It was so weird- I was actually queasy just thinking about how much pain she was in because of how bad the bruise looked. And I'm sure looking at her O didn't help me much. So I made Tom and the nurse change the belly dressing.
The skin is starting to peel off of it and it is oozing and bleeding, yuck. And for some reason I have an issue with stitches. Anyway, after her bath, belly dressing, trach ties, and suctioning, I fed her and rocked her to sleep and she seemed much more comfortable.

This morning we came in and she was sleeping, but needed fed, so I fed her and played with her a little bit and she seemed much better than she was last night. I even got a couple little smiles out of her! She is slowly coming back to life! The attending doctor came in while I was feeding her and said, "So I hear she is going home!" and we were like, "WHAT?!". Well at this point we are still not sure whether we are going home today or not. It is up to the surgeons when she is allowed to leave. We are trying to get some things in order and there is alot to do before she leaves. We have to know exactly what we are supposed to do with her O (which I think is what we were doing before it was all skin the first time), but we aren't sure if we are allowed to give her a bath and get it wet. She also needs her central line taken out. We need to know if they are sending her home with pain medicine if needed. And she usually eats Similac Advance, but because of the recall she is eating Enfamil right now, so we need to know what to do once we get home (how to mix it since she is on higher calories) because our stuff at home might be under the recall too. It would be awesome if we could go home today though! Hopefully I can get some pictures posted once we get home.

She is Starving!

Poor little thing still hasn't gotten to eat yet. They have to wait until what they are sucking out of her belly turns clear. It is close, so hopefully sometime today she will get to eat. I just hate seeing her so mad. I have never seen her mad for so long. I haven't seen a smile out of her in 2 days. I also haven't held her since before she went into surgery which is killing me. I usually rock her to sleep and hold her and play with her all day. She doesn't even want to be moved right now. She gets mad when you even try to move her head. She still has the nerve blocker in. They said they want to leave it in one more day and then will probably take it out tomorrow. She has been doing really good with that and hasn't needed any of the other pain medicine she is allowed to have. Yesterday she wasn't peeing very good so they gave her some extra fluids to help. They also gave her a blood transfusion because her count was low. It definitely helped her color, she was getting so pale. They are very happy that they were able to put her vent settings back to where they were before surgery instead of having to increase them! I just can't wait to be back home and get things back to "normal". And then do this all over again in 6 months and repeat 3 more times. Once we get home I would like to post pictures of her O before and after so be on the lookout for those if you don't want to see them!

Surgery Update

Yesterday we had to be at the hospital at 9:30, so we left our house around 6:45 am. Thankfully Fiona slept the whole way there. When we got there we were taken right back to the PACU (post-anesthesia care unit) because she is on a vent. They weighed her (she is 14 lbs. 9 oz.) and did all the paper work, etc. She was being her silly little self rolling around on the bed and trying to eat everything. Well we have no idea why we had to be there at 9:30 because they didn't come get her until 12! Then Tom and I and my parents went to the cafeteria and got something to eat and then up to the waiting room. Around 1:45 the nurse liason came out to talk to us and we thought she was going to tell us that she was in recovery- oh no, she wasn't, they had just started the surgery! They had trouble finding a vein for an IV so they had to place a central line before they started. So finally at about 4, Dr. Burns came out to talk to us. The surgery went great! He did her hernia first which was a pretty simple procedure. OH, and what we thought was intestine protruding through the hernia (that we could feel) was actually her ovary! Then he explained the surgery on her O. Ok, bear with me here, it is kind of confusing and a little graphic! First he made a cut down the whole center of the O (in the skin) and opened it up. He said most of his time was spent seperating the skin from the organs because they had become fused together. Then he widened the opening because it was so small he wanted it to be a little easier to put things back in. We also learned that there was more in her O than we thought. It contained her liver (almost the entire thing), small intestine, and stomach, and we knew all of those. But it also contained her spleen (we weren't sure about that one), gallbladder, and small part of her appendix. He put back what he could, not really sure what is where now. Then he attached a Gortex Patch to the opening and up around the organs. Then put the skin back over top of the patch. He cut off about 1/2 of the skin that was there. As he was talking to us they took her up to the PICU to recover and we got to see her at about 4:30. She was still sleepy and slowly woke up over the next couple hours. We couldn't believe how small her O was! It is about 1/4 of the size that it was! All evening she was kind of in and out of it. She would wake up and freak out because she didn't know where she was or what was going on and then would fall right back to sleep. She did really well over night.

Before surgery they put in a nerve blocker (kind of like an epidural) to manage her pain. This has been working really well for her and she hasn't needed much of anything else for pain. Today she is still kind of in a out of it, but awake more than yesterday. She is just really mad when she is awake because she is so hungry. She is on IV fluids like she was in the NICU and has an NG tube in that is suctioning out her stomach. We are waiting for the surgeons to round to give the OK to take out the NG tube and start feeding her. She is so hungry that she has been sucking the water off of a mouth swab and then gets mad when it is gone! She pretty much has to be eating ok for her to go home. Her breathing seems ok, at least no worse! They had to turn her BPM up to 18 and oxygen to 30% after surgery, which is normal, but today they are back to 14 and room air.

Over all she is doing awesome and the nurses all love her (like normal)! We are expecting to be here for 3 or 4 days so hopefully we will be home Saturday or Sunday. I will keep everyone updated!

Surgery

Just wanted to update and let everyone know that we have to be at the hospital at 9:30 am for Fiona's surgery. They will probably take her into surgery around 10 or a little after. They told us about 2 to 2 1/2 hours. Keep Fiona in your prayers! I will update sometime hopefully tomorrow to let everyone know how she is doing.

10 months!!

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!