Em

Emily is doing great with her feedings...she nippled all but one in the last 24hrs. Breathing wise, though, they have had to move her pressure back up (to 0.75L/hr) but it has helped her a LOT as they have been able to put her back on room air (21% oxygen). She just needs the reminder to breathe I guess. They have doubled her HMF (the calories added to her milk) to try to get her gaining weight, but so far she is still just five pounds seven ounces. They are also going to run a set of blood tests tomorrow morning just because she had a little loose stool and is a little symptomatic and a little too pale...just a little of too much, so they want to take a look.

It is hard for me to accept that it's okay for her breathing to go backwards while she learns to nipple, but these guys have been doing this for a long time and at some point, when they say something is normal, I just have to accept it, even if it seems to me like things are getting worse.

I also feel the need to warn you that all the nurses tell me that this phase often takes a very long time to get past...SO, I am praying that God will just work another miracle in her life and get her over this hump quickly so we can just bring her home and take care of her ourselves. We are not delusional, we know it will be quite hard caring for a toddler and a special needs baby, but at least M and I could do it TOGETHER, instead of all this divide in order to conquer that we have been doing for so long.

P.S. Her nippling skills are already a miracle in process...and so is my milk supply...it is actually increasing (at a point where they tell me it is likely to dry up)...God is good. :)

Z and Me

Em is doing well eating her bottle...sadly though she is working so hard that she is not gaining any weight. They are increasing the amount of milk she is getting, but for now she is sitting at five pounds seven or eight ounces. They will wait one week before they start taking action to counter-act it.

They have also decreased her pressure in her nasal canula to 0.5L/hr (in English: they decreased how hard the machine is pushing the air into her lungs). Right now, she is actually breathing worse as she tries to adjust to sucking and swallowing. So it you want to know how to pray, please pray that she will learn to breathe while she eats, that she gains the endurance to nipple all her feedings, and that she stops forgetting to breathe when she sleeps.

Now for a bonus, I took my camera on our walk today so I got some cute pics of K's friend Z.

Curb Appeal

I know many of you can't really appreciate this but imagine everywhere that is filled with bark being filled with weeds...my aunt and uncle came for a visit and this is what happened to our curb appeal! It looks SO good out there!


Not only did they redo our yard, they did laundry and took care of K, which freed M up to work on the cars and me to well...go to the hospital...guess I am the slacker of the group but I know a little five pound girl that really appreciated the long cuddle times.




She looks SO much like a baby that every time I go in, I stare at her for a little while. If you cut off her big forehead, she looks a lot like her sister. Honestly, back in the day, it took me forever to used to the idea that whether she was going to live was no longer an issue. I had to work on my thoughts to accept that we were over the hump and she was going to make it. Now, I am working on the idea that she is a real baby and she might get healthy enough to come home some day and live with us...still working on that one. It really atarts to sink in when I am feeding her and she's in my arms, sucking on a bottle. She drinks milk like a big girl! :) I don't know what I am going to do when she breathes on her own!




For those trying to get size, that is a preemie nightie.

...M here...

I have had a lot of people asking me how I have been doing, and my first response was "none of their business." I have been thinking a lot about it, recently, and have realized that it is, in fact, "their business." All of you who are holding us up in prayer, deserve to know.

The last few months have been a roller coaster of emotions. I have been trying to balance the same priorities as B, but have had to go to work, as well. You all know what I do, and the high level of stress I deal with on a daily basis. This has actually helped me. The adrenaline I get when in a hairy situation on the job, helps me burn off the stress in my personal life. That being said, I still have some "bad days" at work that can make it extremely difficult to take off my "work hat" and put on my "dad/husband hat" and vice versa. I have furthermore had to take on more OT to help pay the medical bills that never go away. The OT means working on my days off, which is hard on B. We are learning to make it work. Fortunately, we have great insurance and have almost paid off the yearly max deductible. After this month, insurance pays 100% of the rest of our bills.

I tend to be mostly optimistic about Emily's future and have made the decision to live each day, one day at a time. I think, I have finally learned the meaning of really taking it "one day at a time" and learning not to think too far ahead into the future. I can't physically change the future and am learning to just leave it alone. This is hard to do, as a man. We are planners. I have always tried to plan out the best course for myself and my family. In this struggle with Emily, I have learned that only God is in control of her/our future. I have tried not to learn too much about all that can go wrong with Emily, since there is no point in worrying about a future that God can change in a moments notice. I don't want to waste any emotional energy on it.

I choose to believe God will give us a little girl who will be healthy and able to run around on her two legs, chasing after her big sister. I fully expect her to wear little glasses and have to use an inhaler, and looking at the alternatives, I would rejoice to see this.

I am thankful for many things, right now. I have married an awesome woman. She has, and always will be my soulmate. She is an incredible wife, mother, and friend. I have two little girls, my daughters. We have a nice home, we have two cars that work great (did you know my Camry has 277,000 miles on it?! and is held together by prayer and TLC?). I have a great job that enables B to stay at home. I have great health insurance. I have an awesome family that is supporting us.

I serve a great God who is watching over us and using Emily as an example of his healing power!

100 Days

Well, it is hard to believe but yesterday (Sunday) was 100 days in the NICU. Em seems to be out of the woods on this latest NEC scare and is eating again...and gaining weight quickly as a result (5 pounds, 7 ounces). She should get her IV out tomorrow and is breathing pretty well. She is still spitting up after each feeding but it seems to be less this time around.

Everyone wants to know when she will come home...she has to be breathing and eating all on her own...not for a long time. Thanks for your continued prayers for our family as we get through this!

K Laughing

Apparently the key was not to edit it so it is the whole video, but you should get the idea. :) Yep, that's my mom. She came down for another week to help out and let me spend longer with Em...thus the videos. Thanks!

Well, they are trying her out on the tiny nasal canula...the one you see when kids go home or in adults. She is really too big to still be on the CPAP so they just wanted to test her out with less and see how she did. So far, she is actually doing better...only time will tell.

They are also going to start feeding her one ounce every three hours. They are letting her nipple (try to take it from the bottle) each time and then giving the leftover in her gavage tube. This is all good news...as usual, I am cautious to get optimistic so that is why I am not flying through the roof at the news...forgive me.



Also, I have a cute valentines outfit I was going to put on her and post today but it will have to be late as something happened with the tape and she has scabs across her cheeks...maybe for her "Birth Day" next week.