EG

Sorry we didn't update...both M and I have gotten the cold Kylie has, so we have not been allowed into the hospital. The phone calls have been vague at best so all I really know is that she is back under her billy light, on two different drugs to reduce the excess fluids in her body (therefore her swelling), she 'desatted' less today than yesterday (desat is when the oxygen levels in her blood drop too low and they have to increase the amount coming through the vent) and her brain ultrasound was 'normal'. Since I don't know any better, we will at least take it that she is not doing worse than before.

Since everyone keeps asking about the PDA, I will try again. In the womb, blood runs from the baby's heart to the mom's heart (bypassing baby's lungs since they don't work). When a baby is born, a valve in that artery snaps shut and the baby runs its own blood by its own lungs. Emily's valve is not closed all the way. There are two solutions - drugs or surgery. The drugs can't be used on Emily because one of the side effects is hard on the bowels and since she is already having problems with her bowels (why she isn't eating yet), it is not even an option. Since she has so many other problems, they don't think she would do well having to go through surgery. Eventually, it will need to be fixed, but with all her issues, the time is not now. SO, unless it becomes a bigger issue and starts to cause more problems, it is on the back-burner.

Please pray for me as it is very hard for me not to be able to see her. I know she doesn't really know, but I feel like I am leaving her all alone to fight her problems by herself...as a mother, just leaving her there every day kills me, much less not even going in to visit her.

She has a Face! :)

Well, 24 hrs without cold symptoms for us and they let us in to see her. No touching still but fine with me. Sorry the pics are grainy but they are from M's cell phone. Today was very special for me (mom) cause I have NEVER seen her face. They turned off her Billy light (the one for jaundice) and so they took off her "sunglasses". She looked like a little baby...I know, crazy. Just remember, since I have been allowed to see her, she has been a hat, sun glasses, a nose tip, tape, tubes, and a small chin. I can't lie, I teared up the whole time I was there...for the first time, as I looked at her, I could see her as a person. That's my little baby. She is so beautiful!

We think she might be over two pounds too...not totally sure yet as it looks like most of the swelling is down but she is still losing the water weight.

This is her next to my hand. She is 60% bigger than when she came out...we just need functioning lungs.
Trying to open her eyes, even just a slit.
Medically, she is not any better. Her oxygen is still between 60 and 80%, no new news on the PDA, and they have her on her right side to relieve the pressure on her left lung so they can try to get more air into it. Fixing her lungs is the key here...as it has been from the beginning.

TOYS

Grandma 'forgot' to take back all the coolest toys so we took K outside today to have a little fun. :) I am pretty sure the goofy grin is due to excess snot.

And this John Deere is easily her favorite of all.

Yeah, that's a PB container in Sammy's mouth back there...treats for all.

More?

Well, K woke up with a runny nose and cough today so we are not allowed to go in to see Emily. I called the nurse and Emily is not doing great but also hasn't crashed today. They took her umbilical line out and put it in her arm so it doesn't get infected, her gases are 'nothing to write home about', and her lungs are having a very hard time (her oxygen is back up to 60%...we want her at 20% like all of us). One of the biggest side effects of too much oxygen is damage to the eyes, leading to vision problems or blindness. The ventilator that she is on (and is keeping her alive) is also damaging her lungs and they are starting to see that on the x-rays. The prelim for her heart echo shows a small PDA...the valve is open again, but right now it is small enough that they don't want to put her through the trauma of surgery. They will look at it in more detail later today to make a final decision.

Pray for us as we wait. My new "four-letter word". At this point, we feel like we are just waiting for the phone call that says she hasn't made it. It has been a LONG time since we have had any good news. She is still here and we still walk in faith that this is just 'a time', but my heart could use a little good news.

PDA

I wish we had good news, but unfortunately we just need more prayers. Emily is still gaining weight (not the good kind) and the drs think her heart valve (PDA) may have opened back up. The heart in a fetus has a valve that sends the blood back to mom to get more oxygen. When they are born, this valve normally snaps shut so the body can work independently. Emily's valve originally closed on its own - which was a huge miracle in a baby her size - but if it has re-opened, she will need surgery. Thankfully the hospital she is at is stellar and they can do it there, but it does mean general anesthesia and, well, surgery. They are doing another EKG tomorrow. Since everyone is curious about all the rest of her issues, all I can say is they aren't getting better yet. She needs her lungs to develop and start working if she is going to get through all this. Thank you for your prayers!

Hanging Around

Sometimes I feel like our blog is a little too much doom and gloom, so here are a few pics of life as normal at our house.

Yeah, she's really hanging on her own...such a strong little girl...pull ups and marathons to come soon. We decorated for Christmas...a little early but some holiday cheer is just what the dr ordered.



The lights were the only thing she would touch...and now she won't stop going after them.

Our stockings...my mom made one for Emily and her little turtle that M's dad got for her (her name is Gracie) is hanging out in it.

My mom is headed out tomorrow. She has been a HUGE help to us. She came down the night this all happened and now my kid crawls to her when something is wrong. Thanks! So grateful to have someone my kid likes and we can trust to get us through a time like this!
Go Vikes!! 10-1...and thanks to Favre, we have seen all but one game this season. :)
When you can't pick your kid up, bring everything down to her. Eating cheese in the living room.

The gate into the kitchen and the three little munchkins who weren't allowed in.

More Issues

And let the roller coaster continue. When we got in this morning, Emily was swollen up like a balloon. Last night they started her morphine drip again because she was so uncomfortable. Then her blood pressure dropped dramatically and they had to pump her full of fluids to try to get it back up. To give you an idea, she was one pound 12 ounces and now she is 2 pounds 3 ounces. It will go back down later but for now, she has yet another monitor attached to her and even less skin exposed. While we were touching her, her numbers dropped again and we got 'kicked out' of her incubator. She is okay right now but has a lot of fluids in her lungs and they are suctioning quite often. Please keep praying for her. We NEED her lungs to start working efficiently or none of these problems will resolve themselves.