ECMO Day 2- Going Good

Where's Elli in all that Equipment?

It's hard to believe that it could take all those machines to keep one little Elli stable, but it does. Elli has 2 nurses at her beck and call pretty much all the time. On occasion, they will have 3 nurses for 2 ECMO babies, one floating back and forth. Cory (the female nurse) is now on her 2nd day of Elli duty. She is so attentive to Elli and her crazy mom ( I am always wanting them to suction her mouth because she is pretty much a little slobber monster)

A little bit more awake today, but still pretty drowsy. Moving her arms where she wants them every time the nurse trys to adjust them where she wants them. Elli finally won!

You can see how discolored her right arm is in this picture (more info on that below)

We are getting to touch her a little bit more today, it doesn't seem to effect her as much as some other babies on ECMO. Usually when touched these kiddos will have episodes of high blood pressures, in Elli's case, she only has a slightly higher blood pressure (still below normal) when they change her diaper. Her blood pressures are still on the low side but as long as her mean blood pressure stays with her gestational age in weeks ( 40) then the doctors are satisfied.

Elli giving Daddy a little squeeze.

My new favorite picture of Elli!

A close up of her precious little face. She has had that hand up by her mouth ever since they turned down the Morphine and Versed and smacking her lips like she wants to suck her thumb. Her eyelids are looking even less swollen today thanks to the Lasix.

Elli is getting a roommate today, so Mommy and Daddy had to pack up all their junk and move it over to one side of the room. We have been spoiled by having the room all to ourselves. Elli was very stable all through the night. I called around 2:30 this morning when I woke up to pump and the night nurse Angel said that she has had no real changes other than she has been trying to swat the nurses away with her hands. Needless to say when we got here this morning, they had turned her Morphine drip back up, but she is still squeezing our hands in response to our voices, so that is good, I was just hoping that I would get a good look at those big blue eyes.

We were here for the doctors to make rounds this morning and basically is going to be more of the same. Elli is looking very stable on ECMO, her blood pressure issues are continuing to baffle the doctors on why it is staying so low, but they are not too concerned considering that she is having good tissue profusion, and her color is good and her pulses are also pretty good. The color in her right arm is looking better today. It was pretty swollen and reddened yesterday, so after the Lasix they gave yesterday, the swelling and redness did go down a little bit, and it looks even better today. They have been keeping it elevated with her SugarBear that was donated from the hospital. She really seems to enjoy giving him little hugs now and then. The doctors decided that since she had such a nice response to the Lasix that they would add that to her daily medications. One change for today is that they did decide to just slightly raise her dopamine rate to try to keep her blood pressure in that mean area of 40 and now looking at that monitors her arterial blood pressure is 60/46 with a mean of 50- way to go Elli!

Other than those slight changes, the plan is to keep her on ECMO and stable for the next 5-7 days and continue to let her rest. She is doing as well as we can ask considering the severity of her defect. The Doctors on rounds yesterday said that it was one of the most severe cases of CDH that they had seen here at Children's Mercy, and the fact that she has stabilized out so quickly and that I carried her to term are both great signs for her. We know that there are many tough days ahead of us and we are prepared for whatever Elli decides, for ultimately she is in charge.

Elli had a super busy day yesterday with visitors in and out, I felt like I barley got to see her so Brian and I ended up staying at her side very late last night. Her Grandma and Grandpa Reed came to visit and stayed most of the afternoon, and also had quick visits from her Great Aunt and Uncle Lewis, and Great Aunt Linda Sue. One of Brian's best friends forever Brian Stevens and his wife Shelly came to see Elli and then we went out for a quick bite to eat while they were doing shift change ( we get kicked out of the room from 7 to 8 each morning and evening when the new nurses come on).

As always I will try to get some more pictures when they turn the lights on. Brian and I are hoping for a slow quiet day. Brian is going to catch up on some Sports Center and I am going to attempt keep pumping and make some calls to friends that I have neglected over the past couple of days. So if you have called us and we haven't called you back, be patient we are going to get to it as soon as we can. Elli continues to amaze us both with her strength and determination, she is truly a miracle and we love her so much. Thank you to everyone for the continued words of encouragement and prayers, they are helping and we appreciate every one's offers of help. As of now we are doing good, trying to take care of ourselves and let Elli rest. Hoping that the next several days are boring and much of the same with Elli continuing to become more and more stable taking baby steps towards her next hurdles, weaning off ECMO (we are not even thinking about it for another 5-7 days). We will continue to let you know about her progress and how we are doing. Check back for more picture soon.

On a side note- I am actually wearing jeans today! I might have Brian take a picture. I didn't think I would be able to wear REAL jeans for a long while after Elli was born, but there on, I do have a slight Muffin Top but I guess that is to be expected considering I had a baby less than 3 days ago. Wow it seems like forever ago that we had Elli but I guess she will be 3 days old this afternoon at 3:00. Well I am off to pump and then grab a bite to eat.