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!!

Just dropping in...

This little one has been keeping her formula down for about 3 weeks now, yay!
Bad news is that as of today, her G.I. specialist says that she is severely under weight. Now when you look at Dahlia, she does not look underweight, let alone, severely underweight, but whatever, he's the expert.

He says she needs to gain weight, (and I agree), or we will have 3 options.
1) Continuous overnight drip feeding. This means she would be hooked up to her feeding pump all night long for at least 8 hours. She would be getting an average of about a tablespoon of formula every 10 minutes. But this way the formula would go in slowly and she'd be more likely to tolerate it.

2) Another upper G.I. study. She already had one of these done so I don't see the point of another one.

3) Fundoplication. Surgery. For an explanation of what this is, click on the word. I told him this is LAST resort but we are still far away from this option.

So for now we are going to try again and slowly thicken up her formula so that she gets more calories.

Funny thing about this little monkey. See, when she was on ECMO (life support) they were going to give her a max of 14 days for her to improve before they try something drastic. On her 7th day, they told us that we only had about a week left to see if she got any better before trying surgery without the pressure in her chest going down. The very next day, as if she over heard our conversation, pressure started to drop and next thing you knew, pressure was low enough for her to be taken off of ECMO and have her surgery.

About 2 weeks later when they told us that things didn't look good and if she didn't get better, they again, might have to look at "other options". Other options meant taking her off of the ventilators and it was basically do or die (literally). Again, as if she has been listening, the very next day they started to lower support from the ventilators and eventually she was breathing on her own.

Dahlia always eats like a picky little bird. She eats very very little by mouth.

Today once we got home from the G.I. dr's appt., at my moms house she ate soup (arroz gisado, not sure how to spell that), cottage cheese, 1/2 a cracker, 1/2 a cookie, cheese and milk!

Again, just like tradition, she has been presented with options and then surprised the heck out of us. I hope and pray that she continues to eat like this. If she does, then before you know it we can hopefully get rip of that gtube!

So as I type this out, Dahlia is having her 1st feeding with the higher calorie formula. Lets hope she can keep this down so that she can put some more weight on that little body.

Dahlia is 14 months and 18.4 lbs.

Bad news, not about Dahlia... sort of

Our wonderful, beloved, incredible, loving, caring, most wonderful Dr. Muenchow has decided to close her practice.  :(

Dr. Muenchow has saved and fixed my baby. I was hoping that we'd have her FOREVER. I always knew that she would retire someday but it was just so sudden. This woman works non-stop. She used to come see Dahlia late late in the day many times while she was in the hospital and then have surgery 1st thing in the morning. I am happy for her to get time all to herself to rest and do what she needs to do to take care of herself. Shes taken care of so many people for so long, she really needs to put herself first now. I love her to death and she will always hold a very very special place in my heart.

Again, I am really happy for her that she is finally putting herself first. But for selfish reasons, I am devastated. I know there are other really great surgeons out there but no one knows Dahlia inside and out like Dr. Muenchow. :(

We've been referred to another great pediatric surgeon but it will never be Dr. Muenchow.

Aside from this crummy news, Dahlia is doing great. She had been spitting up a lot of her meals for a little over a month. We went and saw a G.I specialist and he prescribed a couple of medications that didn't work. After trying out different feeding schedules and amounts, we finally found one that works. She has not spit up (knock on wood) in over a week now. Yay!

Today she had her (a little delayed) 12 months NICU follow up. We were told that developmentally, she is doing FANTASTIC. She is doing everything she should be. Shes walking, babbling and is right on track.

We have been referred to a team, that's right, a team for feeding therapy. All of her meals are still through her gtube. She is also little for her age. Something like in the 1% of toddlers her age. So they want her to see a nutritionist to make sure she is getting the caloric intake she needs and then feeding therapist to show/teach her how to eat.

OK, so that's where we are for now. More to come......

Trying to catch up... (its a long one!)

OK, so when I started this blog I imagined myself updating it all the time. Those of us with kids (hee hee I've always wanted to say that) know that it can get pretty tough sometimes finding a minute to get to do stuff like this. Not to say that if you don't have kids you're not busy. It just seems to me that this little angel of mine can be pretty demanding at times and so its hard to update this blog as often as I'd like.

ANYWAY, Dahlia is doing very well. I was very excited to get my weekly update from babycenter.com email me know what my "Toddler" should be up to this week. Since that last email, I've always gotten updates for my baby. Shes now being referred to as a toddler, ahhh! Where does the time go?!

Our toddler is now officially 1 year old. She just had her 1 year Dr's check up and so far so good. Aside from her over all health which is great, shes a little on the small side. Who knew, a Cachu on the small side!
Shes all of 16lbs, this puts her in the 1% range. Shes also a little short, something again about in the 1% range.   But like my sister Marina said, "Hey, there are some over weight babies, and some under weight". So shes a little small, shes healthy and that's all we can ask for.

She has also been referred to a G.I. specialist. For the past week or two, Dahlia has been spitting up again on an average of once or twice a day. Usually just once a day. Her Dr says this is most likely reflux so as long as its only once in a while, there shouldn't be too much concern. Its when its every meal that she spits up that can get scary, that could be a sign of a torn diaphragm. So lets keep praying it doesn't get worse.

Our little animal, oops I mean baby, is non stop all day long! She doesn't walk on her own yet but any day now she will. She moves and walks everywhere as long as there is something or someone to hold onto. She just needs to let go!

I tried to take her on her actual birthday day to get some photos taken at an actual photo studio but the minute we walked in, she freaked out. Its set up very much like the Dr's office and she HATES the Dr's office. We couldn't get her to calm down so instead I tried my best to get some shots at home. Here are a couple.....

Strike a pose!!

Next we have some snap shots from her actual birth day at our house.

 Any by the way, Happy Birthday is now her favorite song.

 Yay!!!

OK, next we have a day at the ponies & choo-choo train with her cousin Leila!

She was all smiles when her got her on the pony, then a few turns and she was no longer a happy camper. We had to cut it short. But she sure loved the train!

So that's it for now. I know I have to post pictures from her birthday party in case you haven't seen some on facebook. I'm just waiting for some kind souls to send me some. I think I managed to take about 2 pictures before the party started and that's it!! Way to go mom huh?