Yippee!!

So today Dahlia had another follow up appointment with her surgeon and the infectious diseases doctor. They agreed and decided to remove the drain!! Yay!!

I really was not expecting for it to come out today, I was thinking they were going to give it at the very least one more week. There was still yucky stuff draining out but it was very little. And so they agreed that at this point, they were more worried about germs and bugs going up the drain than coming out of it.
She also had her gtube replaced with a mickey. This is a lot smaller and is close to her tummy so she no longer has anything hanging off of her, yay!! No tubes hanging out!! Well one little one, she does still have her picc line which will stay in place until at least next month. But for now, she is a lot more comfortable.

This does not mean she is out of the woods. We (along with the doctors) are praying, hoping and keeping our fingers crossed that nothing accumulates and needs to be drained out again. Please go away infection keep going away!!!

I was also told that the blood work they drew last week looks very good! :) yippee!!

So now she can comfortably sleep on her tummy, on her side, on her head whatever! Also, no more working about making sure tubes don't get caught and pulled and yanked and so on.

Yay, happy day!!!

Home life.

Life at home is good. Surprise visits are always the best, Dahlia gets especially happy when anyone visits.

She's still kept up a good appetite. She's also drinking a lot of milk.

The drain is still putting out stuff but its less then what was coming out at the hospital. Plus I am getting a lot more comfortable with her picc line. She has a nurse that comes to see her once a week to check the picc line and to change the dressing since I am not allowed to do it myself. There was a little drama at first with the 1st nurse that was assigned to her but they sent us a new one and life is good.

Here are some more pictures of my best subject.

Home sweet home.

Oh how nice it is to be home. Makes you appreciate the mess, the dirty dishes, the piles of laundry! Ah,  how nice to be home.

Saturday was quite eventful. Dahlia had a blast with her visitors. She finally saw Baba ( her cousin Rebecca) after not seeing her for so long and she was so happy. She played until she knocked out for her nap.

Then came the panic, crying, scrambling and the, "NOOOOOOO".

As I was putting Dahlia down for her nap, the tube from her Gtube got caught between me and her and I pulled it out, completely out!! I heard a POP and then a small gush of fluid come out from her tummy then saw the entire Gtube laying on the crib. I froze. I just sat there looking at it telling myself, "oh my God, please wake up, Isabel wake up, wake up".
I finally yelled for Abel and he had to snap me back to reality and tell me to calm down. It has popped out once before but I just felt so awful that here she was so happy at home and we had to take her back!  I finally got myself together, grabbed the emergency kit for her Gtube and put one back in.
I called the surgery team that was following her and they said they wanted her to go to the ER just to make sure it was placed correctly. Sp we went, it was replaced, they took X-rays and almost 4 hours later, sent us on our way.

Aside from being upset about being waken up from her nap, she was fine. It didn't seem to hurt her and she was happy most of the time except when dr.'s or nurses would touch her.

I still feel awful about what happened but I am so happy that we were able to fix it and get home.

Dahlia has been so happy at home. Yesterday she had both gramas at her beck and call following her around and she couldn't have been more happy.

We are still hoping this infection goes away so its still not guaranteed that she won't need surgery again but we are paying it clears up.

Thanks again to everyone for praying and thinking about Dahlia and us.   :)

Pictures to come.....

Day 31 :) :) :) :)

SooooOOoOOoooOOOOOo as long as everything goes well, no surprises, no nothing then we will be going home tomorrow!! Yay!!!

As Ive been saying, Dahlia is doing so good. Aside from running around, she is pretty much back to her normal self. She will be going home with the drain so we will have to keep an eye on it until it stops draining, hopefully this will be soon.

So the plan is that we get discharged tomorrow morning and meet the home care nurse at noon at our house.

So happy to be going home! I'm sure once Dahlia gets there she will be so happy too! Yay!!!

She still has the infection so we are still hoping and praying that it goes away. She will be on at least 6 weeks of IV antibiotics to give her the best chance at getting rid of this. If it doesn't go away, she will need another surgery to get rid of the infected patch that was used to repair her diaphragm. They will then have to wait for the infection to clear before they can do surgery again to repair in yet again. Needless to say we are praying that this ugly infection GOES AWAY!!!!

Yay home!!

Day 29

Hello all.

We are so close to going home. Dahlia still has that drain in and its been draining some puss looking junk so they want to keep her here until it clears up. Last week they were saying, "it should clear up by the end of this week", this week they are saying the same thing.

While she is here, she is living it up. She's feeling a lot better. She's getting a little more brave and walking a bit more in the play room. She has her personal donkey (me) take her for walks a couple times a day. And we read tons of books. Well more like the same books a ton of times.

Here are some cute pictures of my cute baby.

Day 24

So much to be thankful for huh? This year and every year, past, present and future.

Although we didn't get to spend it with either of our crazy families, we were visited by the Thanksgiving turkey who delivered a fresh Thanksgiving dinner! Moms turkey, stuffing & yams, Larrisas ham, Lennys mac & cheese muffins and rolls of bread. Like many of you, we were stuffed!! And what was my thought once I hit food coma..... wheres the dessert?!

Here are a couple of pictures of our fesitivies.......

Some people play football on Thanksgiving, we played Cribball!! Notice the ball flying over the crib.

Special delivery form the Thanksgiving Turkey....

Here is a shot of Dahlia enjoying some of the feast.

Can you tell which one is the real cookie jar?

Day 22.

Little Miss. Dahlia is doing great.

The drain thats still attached to her is draining less and less so it should be out by the time we get home. She also seems to be responding well to the antibiotics because aside from walking, she is almost back to her normal self. She's eating, playing, talking, yelling, hitting, pushing papa away, giving kisses and so on.

Yesterday the surgery team told us that they are still trying to figure out what is the best antibiotics to give her once we are home. Since she is currently getting 4 different ones, its a little difficult to see if they can condense it to one.

Also, even though it will be me or Abel who administer the medication through her PICC line, we still need to be set up with an at home nurse who will check the PICC line and change the dressing when needed. They said because of the holiday weekend, it will be pretty hard to find someone soon. Case and point, we will probably be here until next week.

Its OK, again there was some disappointment but its OK. She's being taken care of here very well and she's feeling better. This means we can go for more walks in the wagon and maybe even visit the play room.

They also started teaching me and Abel how to give her her meds through the PICC line. I've been doing it since yesterday and its not really hard. You just have to be careful to keep everything sterile.

So progress is good. Needless to say there is a lot to be thankful for these days and everyday. :)


Please don't judge my baby by her hair. Its still early and she's got a bit of bed head. Also, she's in the middle of breakfast. Eggs, bread, cheese, danish....

This is a closer picture of her PICC line. It will say like this when we go home. Its secured on her arm very well with a couple of sutures and see through tape. I will most likely keep this covered up with a sleeve or something once we get home. Plus she's been very good so far at not grabbing it.