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.

Day 19.

Dahlia is getting better and better. Today she finally woke up in Dahlia style saying, "mom? mom?" and then giving me a huge smile when I walked over to her.

She's eating so much and being her goofy self. She sat up for a little bit today but she gets tired very fast. She is still scheduled to get a PICC line tomorrow around 10:30am. Again, its not surgery but she does have to be put under general anesthesia so that they can get it in with her being still.

She has one last drain hooked up to her and its still draining a bit. Hopefully it will stop in a couple of days so that she won't have to go home with it.

So it still looks like Wednesday or Thursday for a possible discharge.

Praying she continues recovering as well as she is.     :)

Day 16

Dahlia woke up looking, acting and feeling a lot better. She still has some moments when she gets upset and seems uncomfortable but she is also talking and laughing a lot. She is talking to the TV saying, "Oh no, OH NO, oh NO" and laughing as I type.

Dahlia will be going home with a PICC line. This is so that I will be able to give her her medications at home. She won't be getting this until Monday. She will need to be under general anesthesia again to put the PICC line in. Then if all goes well and she continues to do well, we might be able to go home Wednesday or Thursday.

So for now all is going good. Praying and praying that this ugly infection goes away. If it does not, this will mean more surgeries :(

Today a special shout out goes to Francis. She has been Dahlias nurse for the past couple days and she is super awesome. Hopefully by the time she's back we will be long gone. Francis if you are reading this, thank you so much for being so good to Dahlia. For treating her so well and for being so great with us. We've been through a lot of great nurses and you are most definitely one of our most favorites! Be safe and have fun in Texas!

Feeling better :)

Dahlia woke up this morning feeling a lot better. She started talking right away and asked for water. Since they finally ok'd me to give her food I immediately asked her if she wanted cheerios. Her face lite up like a light bulb and she said "YEAH"! She ate a handful of cheerios, 3 butter crackers, and a couple of Gerber maple pinwheels. She's been drinking water and juice too.

They have also started her feeds this morning at a super slow rate. I said this before and I'll say it again, "Praying she keeps it down and poops it out"!!

She played a little this morning with me and the nurse. By the way, I love our nurse today. We've had her once before and she's super awesome. This means a lot when you've been through as many nurses as we have.

OK so hopefully today will be more of the same and better and maybe we will take her for a little stroll in the wagon.

:)

Late update...

Dr. McDreamy, I mean, one of the surgeon that follows Dahlia came in and said that he spoke with the radiologist and was told that there was a substantial amount of abses that was removed. He said there is most definitely an infection.

He said she will remain on antibiotics for at least 14 more days. If she starts getting better and tolerating her feeds we might get to go home a few days. If we do get to go home while she is still getting antibiotics, they will send her home with a PICC line or an IV so that we can administer her antibiotics at home through the IV. Scary. 

They said she did really good throughout the procedure. Once we got back to the room she threw her arm in the air and said, "All done"!

We are hopeing and praying that tomorrow she wakes up feeling a lot better and more like herself. 

Here she is watching TV. Notice her fan mail on the wall.

Here she is getting ready to go down to radiology to have that nasty stuff drained out. Riding in style if I should say so myself.

Now that we are all done, her papa steers her back to her diggs.

Day 14.

I've been hesitant to update because I always say, "I'll update when I have better news". Then we'll hit a bump and there goes that.

So yesterday she had a catscan done. They confirmed that there is a pocket of what is probably pus due to an infection. The main concern is that it is right underneath the new patch on her diaphragm and although they said its not too likely, they are afraid it could get infected.

So today she will have yet another procedure done. Although its not exactly surgery, it is performed with the surgery team by a radiologist and she will go under general anesthesia. They are going to make a small incision where the collection of pus is and drain in. They will then leave a drain on the outside in case it continues to drain.

They said the drain will stay in for about 5 days. She is also on 3 different I.V. antibiotics. That means that this is not something we can give her at home. She will need to say here while they give her these. They estimate about another week in the hospital. It sucks so bad for her. But as long as she's getting better. As long as this can be taken care of and we won't have to come back. It just sucks. At least we are able to walk about with her in the hallways. And when she is up to it, there is a really nice play room.

So now we are waiting (literally) for the radiology department to call us down. I'm not sure how long it will take. My guess is about an hour. She had this same procedure done last year when she had an infection after her last surgery.

Praying all goes well. Thanks.

Little bumps..

Dahlia was having a good day yesterday. She wasn't however, pooping. Dahlia was being fed super slow through her g-tube and all was going well. Again, except for not pooping. Last night she started spitting up. Not a lot but enough to be concerned. She continued to spit up this morning and so they took and X-ray of her chest and abdomen. From what the nurse was able to tell us was that her chest X-ray looked fine. I think if there was something wrong, they would have told us by now. The X-ray of her abdomen however shows there is a lot of poop. So they decided to stop the feeding pump until she goes.

She has been pooping just a tiny bit but she needs to go more. I am thinking that she has been afraid to push when she has to poop because it might hurt her incisions.

So we are waiting to hear from the doctor so that they can tell us in any better detail what they saw in the X-rays.

So today she is feeling no so good. She's been grumpy and tired. My poor baby needs a break.

Aside from that, everything else seems to be going well. Its just that since her G.I. tract (any ones for that matter) is not tip top, it seems to affect everything else, heart rate, breathing rate and so on.

Hope to have better news tomorrow or even sooner...

Day 9.

Dahlia is doing a lot better. Although she wasn't in the best spirits today (after 2 big surgeries who would be?) but she is doing better.

They started her feeds today. They are slooooowly working their way up to what she is used to eating at home. They have also ok'd me to give her actual food. Aside from the pediasure that she is getting via gtube, today she ate a little oatmeal, some cheerios, 1 strand of plain spaghetti pasta, 2 crackers and a lot of apple juice and water.

They will slowly give her more pediasure until she is taking in her normal amount with no problems. I asked one of the surgeons today if all goes well, when could we expect to be home. He said probably Monday. I was a bit disappointed, I was hopping it would be this Saturday but as much as I want her home, I'd rather she stay here a few more days than leaving too early and having to come back.

So hopefully all will go well. Her tummy is a little swollen but it could be because she finally has some food in there. The surgeons checked it out and they said it looks good. They said everything looks really good.

:)

Yipee!

NG tube and chest tube are out! They did a follow up X-ray to make sure all is good and all is good! I was also abel to hold her for a while!  :)

Day 7

Little update...

Dahlia is doing really good. Her numbers continue to be good. They will do another X-ray this morning and as long as everything looks good, they will remove the NG tube (the tube in her nose that goes to her tummy) and her chest tube.

Go baby go!!

Day 5

So first and foremost, Dahlia is doing well. 

Yesterday Dahlias belly was a little swollen and pretty hard. They thought it might be due to so much medication or maybe because they had tried feeding her but she wasn't digesting it yet because she was not ready. They had a few ideas but were not sure and just decided on, "let wait and see". 

Yesterday evening she started spitting up blood. Old brown blood, a lot. I've always feared that one day she would start spitting up blood out of nowhere. You can only imagine my horror when it was actually happening. And it wasn't a little, it was A LOT. This went on for a while before they decided to have an X-ray done of her chest and abdomen. 

The look on the surgeons face that came in said it all. He went right to her and felt her tummy and said that the X-ray was very concerning. They said she had a lot of air in her abdomen. Air in the intestines and stomach is OK, but air in the abdomen is no good. He said this could be a sign of a hole in her intestines. If there is a hole, then stuff could leak out and cause some major damage. He then said she needed to have surgery ASAP. 

So we talked to a couple of the surgeons, they told us all sorts of things that it could be and around midnight we took her down to the OR. They started the surgery around 12:30am and finished 2 hours later. 

They said they found a hole in the back of her stomach about the size of a quarter. They said it was an ulcer like hole. They said that it had absolutely nothing to do with her recent surgery and that it was pure coincidence that it happened around the same time. He said on one hand it was good that it happened while she was hospitalized so that they were able to fix it right away but it was also bad that it was so close to her recent surgery. Now we have to worry about her patch on her diaphragm getting infected because they opened her again. They did start antibiotics to hopefully prevent any infection. 

She is doing good this morning. The first thing she said to me was, "aqua nam nam", water & food. The plan today is to keep her comfortable and calm. Her numbers are good and we'll keep praying for her to keep getting better. No more surprises! 

The amount of support we have gotten is absolutely incredible. Larissa & David showed up right away, as did Joel & Heidi. Abels friends and co-workers also showed up. And the number of texts, phone calls and I love yous from my sisters and everyone else sure made us feel loved. 

Thank you everyone. 

Day 4.

Hello all.

Dahlia was having some breathing issues. She was breathing kind of fast. They think this was because she still has some fluid in her chest cavity. They saw that there was a clog in the chest tube so they did some stuff to it to get it moving.  It worked because all this brown looking blood started coming out. This  is good. Brown blood is old blood so this is good. 

They said her X-ray from this morning looks about the same from yesterday but since stuff is coming out this is ok. 

AND best of all , she is breathing a lot better. She's still taking fast breaths but she's breathing better. Let hope this stays the same and keeps getting better. 

Since she's getting better we might be moving out of the PICU today. They told us this yesterday so lets see if we get to move on up. 

Thank you for checking in.

Oct. 31, 2012

So am a lot worse at updating this blog as I thought I would be.

OK lets see........

Since the last update in June, Dahlia was hospitalized for a couple of days due to some virus she caught. She got over it pretty quickly but while she was in the hospital, they took an X-ray and noticed that it looked as though she might have torn her diaphragm again.

So we met with Dr. Grikscheit (her surgeon) who said that since she wasn't having any symptoms that were bothering her, lets wait about 3 months and follow up.

About 3 months later she caught a nasty cough and to rule out pneumonia, they took an X-ray. Dr. Grikscheit checked it out and confirmed that is was in fact torn.

So cut to today. She had her 4th diaphragm repair. What was estimated to be a 1 1/2 hr surgery turned out to be just a bit over 5 hours.
Apparently the previous patch that was placed to repair the hole was gone! So she put in another one, one that should hopefully stay and stay for good.
She said there was a lot of scar tissue and lots of intestine in her chest cavity and so she had to be very careful and take things really slow. This is why it took so long.
Now she's resting. She has a chest tube in and should hopefully only be in for about a day or two. She also had an epidural for the pain since having a tube between your ribs is very painful.
She's been in and out since the surgery. She's given us a few smiles and nods to us when we say something she likes.

They (the nurses) tell us that she is looking really good. We are praying that everything keeps going forward.

Abel and I had a pretty hard time with this one. You'd think it would get easier after the 5th surgery but it doesn't. I don't know if its because she's older and she kind of knows whats going on. I don't know if its just because its been a while (just over a year) from her last surgery.  Or maybe because its a new hospital and a new surgery team. In any case, Abel and I were a mess all morning. When Dahlia was taken away to the OR, I felt like I couldn't breath, it was pretty bad. Oh poor me, she's the one who was cut open and is lying on a hospital bed but whoa is me!! haha

Here she is patiently waiting and playing. 

Getting closer and still finds time to play.

Here she is after 5 long hours of hard work.

Aside from this big surgery, Dahlia has been a crazy monkey. She's talking, running and playing all the time. She is a such a great baby. She's also eating a lot. She ate so much the other day, she made herself gag! We've also taken our first family trip!! And where did we go? Disneyland? Nah! Grand Canyon?! Nah! Wally World?!?!?! Nah!!! LAS VEGAS!!!!

You know that saying, "What happens in Vegas, stays in Vegas"? Well let just hope thats true...... because she might have drawn on the hotel door and bathroom wall with a crayon.

Here she is making herself a drink. Only Patron for her!! 

This bed should do! 

 Bath time anyone?!

Checking out the view.

We also went to Solvang for our cousins beautiful wedding.  

She got herself a new hat & sweater.

And this trip to Solvang wouldn't be complete without a Danish dress!

Here are some wedding pictures...... of her!

Last but not least, Halloween EVE! Abel coworkers were sweet enough to get together for some pizza and candy and she got to dress up as her homegirl Minnie!!

I will post something soon as soon as she is feeling better.

Thanks!!

Is it summer time yet?

I ask because someone had her first official fun in the sun pool party!! And I missed it, boooo!!! Oh well, at least she had a blast.

Before we get to the photos that could easily end up on the cover of Sports Illustrated, I thought I'd share how Dahlia is doing so far.

I'm very happy to report that she is doing really well. Aside from spitting up (at least once a day) she is doing really well. She is sloooowly gaining weight, but I'd rather it be slow and going up than down.

We recently met Raquel and Jane Stockwell. Raquel is a BEAUTIFUL 12 year old who was also born with CDH. She is very sweet and Dahlia warmed up to her pretty quickly. I also got to meet and give Jane a big'ol hug. We've been in touch now for about a year. Shes been down the path that we are going through and so its been so awesome to have someone that knows just how it is. The same worries, the same fears.

Here are just 2 of the most beautiful miracles to come out of the Huntington Hospital NICU.

We also got to visit with some the of nurses and doctors that took such wonderful care of our babies. It was so nice to see them again and to show our girls off.

Dahlia started seeing another feeding therapist today and although we didnt get any "feeding" done, she did give me some pointers and ideas of what could hopefully get her to be more interested in food. So we look forward to seeing her again.

So there they are, the wet and wild pictures from her 1st pool party. The beefcake in the pictures with her is her nino.

Time to get out and someone does not like the sound of that!

So that's its for now.

Thanks!!