ZERO!!!

Our little girl turned zero today! What does that mean? It means she made it to her birth date and now, not only is she supposed to develop her brain, lungs, eyes, intestines and other body parts, she is supposed to start developing skills and acting like a baby. That’s no small task for such a little thing! 
The drs have two different ages for her:

CA (chronological age): her actual age according to the calendar…easy enough…she was born on Nov. 6, so that makes her a little over 15 weeks old.

GA (gestational age): her age according to her original birth date (today). This is used to determine where she should be developmentally and what type of behavioral patterns we should expect.

So what does THAT mean? Well, when drs or therapists assess Emily, they will use her GA to determine how she is doing. For example, if a full-term baby should be sitting on its own at 6 months, they will expect Em to sit on her own six months from NOW (when she is 10 months old). They will use her GA for about two years of her life…until her gross motor skills (sit, crawl, walk) have caught up. Then they will switch to her CA for the rest of her life. IF there aren’t any learning disabilities or other brain development issues, they hope to have her all the way caught up by second or third grade.

Realistically for her, they have told us that we can expect her to be behind even the adjusted age for quite a while. If you think about it, it makes sense…if she were born today, she would be able to breathe, suck and swallow all at the same time and she would be able to nipple all her feeds…she can’t even poop and breathe at the same time. :) Aww, that’s our little girl!
So, in honor of the little girl that has defied all the odds, I read the blog last night and wrote down all she has overcome already…her we go:

- Pneumonia in both lungs
- PDA (heart) surgery
- Two broken arms
- Three intestinal infections
- Weeks of acidosis (blood problems/infections)
- 6 weeks intebated
- ROP in her eyes leading to near retinal detachment
- A trip to Pasadena for 10 days
- Two laser eye surgeries
- Two experimental eye procedures
- NPO (stopped eating) four times – which means starting over eating four times
- General anesthesia twice
- Countless blood transfusions

And let’s not forget,
-Breathing…despite having chronic lung disease (BPD) and only partially functioning lungs
-Countless pokes, prods, IVs, and antibiotics
-Being isolated – not held – for the first 7 weeks and 2 days of her life

Also, as I read through the blog, I realized there were a couple of things we needed to mention in praise to God for his answers to prayer…I’m not going to mention the obvious…that our little girl is here and ALIVE…She has overcome all of the above…and WE have lived through them too . Or that He has kept our house, our cars, and everything else around us functioning and free of problems…

I’m talking about blog posts of specific prayer requests that never got updated.

-Remember when my milk was getting lower and I asked you to pray that it would increase and we would have a “serious storage problem”? I almost laughed when I read that! We have a 7 cubic foot freezer full of nothing but milk AND if we don’t find another one on craigslist, we are going have to take a box down to my aunt and uncle’s place by next week. Right now, my milk supply is increasing; not decreasing…that is why we continue to get ahead of her.

-Every time we got sick, ummm, well, we got better. We have been healthy for almost a month now and it should be summer soon so I am hoping we have turned the corner on that one. Ironically, ever since that first bad cold, K has been the healthiest one of all of us…it seems like she has teeth coming in all the time but other than that, she’s a happy little girl with LOTS of energy and a need to climb up slides backwards. :) That’s my girl!

Thank you for your prayers and support! Specific prayer requests now are that she will learn to eat and breathe independently, that she will begin to put on weight again (still 5 pounds, eight or nine ounces), and that she will not have bad reflux in response to the HMF (additions to her milk - necessary to add calories without adding volume).

Also, tonight, she has her sleep study…they will monitor her heart and breathing all night long. I don’t want to pray for specific good results, but that the results will be an ACCURATE look at her status right now. God Bless!