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?

A day at the park.

OK maybe it wasent a day but it was a little while.

Abel, me and Dahlia went to scope out the party site again and when she caught site of the playground she got super excited.

Here she is going down the slide with a little help from pops.

Check out the half scared half excited smile.

















Here she goes making her way to the BIG slide.....

Get ready, get set, go!!

Here she is with our good pal Charlie. Charlie is the BEST little animal when it comes to kids. He's had his hair pulled, ears yanked and gotten a little roughed up by a couple of cute babies and has never once snapped.

Cuties.

Time line

OK I've been wanting to get this going FOREVER but keep putting it off. Like any normal mother I want nothing but to talk about my baby all day long. I want to share with everyone how she is doing and whats new in Dahlialand.

I think by now most everyone knows about Dahlias history. When she was born, how she was born, her struggle, her strength, her fight and her amazingness.

So to make a LONG story short, here is a quick timeline:

2/15/11 - Dahlia was born via c-section
2/15/11 - diagnosed with CDH, put on ECMO (full life support)
2/28/11 -  taken off of ECMO and has her 1st hernia repair
5/05/11 - discharged from the hospital!!
5/18/11 - hospitalized for RSV, during this hospitalization we found out her diaphragm had torn again
6/09/11 - 2nd hernia repair
8/29/11 - 3rd hernia repair
9/20/11 - hospitalized again for an infection from the last surgery

I kept looking and sometimes treating Dahlia like a CDH baby or like a sick baby. Recently I decided this was no more. CDH is simply (although not so simple) something she was born with, not something she is. Although we have to be on the lookout for CDH related complications as she grows, this doesn't mean I have to act or treat her any different than if she was born with no complications at all.

I just don't want her to feel like she is anything different than any one of us. Of course I would never hide anything she went through from her or even try and hide her button (gtube) out in public when its time for her to eat but I never want her to feel odd. Does this make sense?

I'm also making this blog public so that any other parents looking for other families who love someone with CDH can see how well Dahlia is doing.

We were warned about so many things that could go wrong. About developmental issues, feeding issues, hearing loss, reflux, brain damage, the list goes on and on. And aside from her gtube and some reflux, thank the good Lord above we have not had major issues aside from reherniations.

Dahlia likes to eat, shes recently taken a couple of steps ALL ALONE, shes like any normal 11 month old beautiful monkey woops, I mean baby.

So theres my "intro"  blog. Hopefully I'll be able to get myself to update this often including pictures.

Thank you for reading this and being interested in out little flower.