4th O surgery!

To make a long story short, Fiona's 4th (and final!) O surgery went great! Her amazing surgeon was able to get full muscle closure! She was only in the hospital over night again this time. She was up and walking the next day, which we thought was amazing! She sure is a little trooper!

This is from a couple days after her surgery.

And this one was to show how much has changed in a year! 9-21-10 was the night before her 1st surgery. And 9-21-11 was about 3 weeks after her 4th surgery. It is amazing to look back at how HUGE it was!

Her scar is healing up nicely and some day we will discuss giving her a belly button. Tom thinks we should leave her without one because it will give her good stories to tell, like that she was abducted by aliens, hahaha!

New O Pictures

These were taken the night before her 3rd surgery (in the hotel room!) with the dressing on.

This was a few hours after surgery.

This was 3 days post surgery (the incision was still nicely closed up).

These wer taken last night (1 month post surgery). The incision has opened at the very top and 2 places towards the bottom. The greenish part is the Gortex patch. The left part (well her right side) is very dry and flaky and we're not really sure why. We're hoping it's not a big blister because that would really suck!

Surgery Update

Surgery went very well! Her belly is tiny now! Even though the surgery went well, everything else was a mess. The hospital was so full and she has to be in the PICU because of the ventilator. Well the PICU had no beds available. So she was stuck in the PACU (recovery area) overnight, which not only sucked for her, but for us too. The PICU has seperate rooms, but the PACU is just one big open area. No privacy- just curtains, crying, screaming kids coming out of surgery, noisy, cramped, no t.v., etc. It was awful. She was in a lot of pain and was on morphine until yesterday afternoon. She got a fever during the night on Wed, but luckily went away by yesterday morning. Since she wasn't actually up in the PICU (but was being seen by the PICU doctors since that's where she SHOULD have been) it was like pulling teeth to get any answers. She was doing better by early afternoon yesterday and was eating and switched to Roxicet for pain instead of morphine. But they still made the decision to keep her another night without even talking to her surgeon. He is the one that should make all the decisions. So we finally got to talk to him at about 6 last night and he said that he was going to keep her until this morning, but because of our sitution (being stuck in the PACU) he would let her leave last night. So the good news is that we are home!!She is still in alot of pain and is kind of in and out of it from the pain meds. She didn't sleep well last night, which means neither did I! I washed her up and Nana came to visit which always makes things better! She is very stiff and her belly is a little bruised. But we finally got a couple of smiles out of her! It will probably be at least a few more days until she is back to normal.

Thanks for all your thoughts and prayers, we really appreciate it! I will add some pictures later!

New O Pictures!

I have shown some of these before, but I wanted to show the progress!
This was 3 days after she was born.

The night before her 1st surgery.

4 days after 1st surgery.

Before 2nd surgery

5 days after 2nd surgery.

Last week :)

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.

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.