Just what Mommy Needed

Last night just as we were about to leave, Elli did something we had never seen her do, she had her eyes open. She was looking all around and couldn't get enough of her Daddy. Initially the light was too much of a shock to her eyes, so we turned down the lights, that is why the video is so dark, but oh well. It was so amazing to see her awake and responsive and looking up at us trying to focus. You can see in the video that she is trying to focus and moving a lot. She also has the hiccups in the video, which she also did a lot when she was in my tummy and during her ultrasounds. At one point she was looking at me and I got right down by her face and told her how much I loved her and how beautiful she was and she immediately threw both arms up in the air like she wanted me to pick her up, and man did I ever want to, but resisted (barley). She was squeezing Brian's finger and pulling his hand down to try to get them both in her mouth. She was using the trachea tube as a pacifier last night and just sucking away on it and blowing bubbles. She was wide awake for about 30 minutes and Dad and I just ate it up, we didn't want to leave, but the nurse bless her heart let us "play" with her the whole time. Finally it was time to call it a night (around midnight) and we covered her eyes back up and tucked her arms and legs in to try to get her cozy, and she did end up falling back to sleep, but she didn't really want to. That 30 minutes was the best 30 minutes of my life. I could see my baby Elli for the first time, it was so amazing to see her look up at me and it literally melted my heart, and her daddy's.

I woke up during the night to pump and called to check on Elli, the nurses said that she had just woke up around 4 and had a poopy diaper! Not that she is getting any feedings in her tummy, she had just passed her meconium stool, but still that is always a good sign. The night nurse said that she was wide awake again and playing around, but this time she couldn't get her to calm down as quickly, so she ended up giving her a PRN dose of Morphine which settled her right down. The night was pretty uneventful, her vital signs have been staying pretty much the same, even during her awake periods, which is always a great sign. I am waiting for the Doctors to round this morning still, so if there are any changes I will post, other wise, I am going to play with Elli, it looks like she is starting to wake up again, she is moving around a lot so I am going to go check on her!

What a boring day

Here is Elli posing with SugarBear, he is keeping her from getting that thumb up to her mouth. She has been trying to get it there all day. They had to give her extra doses of Morphine and Versed today because she has been trying to be so active and moving her arms and legs around. Earlier today she was breathing over the vent setting of 20, which tends to allow air into her stomach and intestines so they don't really want that. So since about 3:00 when her roommate came, she has been pretty zonked out.

They have been having the lights on more this afternoon, and Elli really squints when they are on so this is the little cover we use to keep the bright lights out of her eyes (note it is pink and brown - the same color as her new room!)

Overall Elli had a really stable day. Not much changes, her blood pressure continues to be really good for her 50's/40's with a mean of around 50, without any additional boluses or med changes other than the slight increase in dopamine this morning. She continues to have really good urine output so the daily Lasix is really doing it's job. As for her right arm, it looks immensely better even this afternoon. They did a Doppler of her brachial and radial pulses to make sure that there were no clots and everything looked great. They think that the ECMO cannula's are causing a slight obstruction in her neck, but overall she has good pulses and good tissue profusion. I did have a little bit of a freak out moment this afternoon. Brian's sister and brother-in-law came to visit us from Iowa and Brian and his brother-in-law Charles were visiting with Elli as I was pumping. When I got done pumping I stopped in quick to see Elli and I sort of freaked out, well actually I did. I spazzed out and asked the nurse when the last time she was over to look at Elli. I noticed right away that both her arms and legs were all red and splotchy. Of course our nurse did notice it after Brian asked the nurse if her skin was reddened because they had just turned her from the side she had been laying on for most of the day. At first Brooklen our nurse thought that it was from lying on that side, but when it was on both arms, legs and her cheeks, she chalked it up to the antibiotic Gentamycin that she had just given her a few minutes before. The rash ended up fading pretty fast and is now completely gone.

Well Brian and I are going to head to the Ronald McDonald house for the night, planning on trying to get a good nights sleep. I am sure that when I get up to pump I will have to call to check on Elli just for a little piece of mind. It is so nice that the night nurses don't get annoyed with me calling, or at least they haven't said anything. We will let you know any new news tomorrow! Pray for more boring days!

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.

Stable through the Night

Miss Elliott on ECMO day 1

Brian and I checked up on Elli during the night, and she was staying pretty much the same, still having issues with low blood pressures, it seems that she really likes a high volume of blood runing through the ECMO machine, so they did end up giving her another unit of platelets, a unit of blood and a bolus of Albumin to keep her blood pressure in the acceptable range. She is still having blood pressure issues this morning, but not as bad as yesterday when we were here.

Yesterday the doctors decided to reduce Elli's sedation medications because she was pretty limp, they decreased both her Morphine and Versed drips down to 30 from 50, and we really noticed it this morning when we got here. She even had her eyes peeked open just a little bit and was able to give our fingers a little squeeze. The doctors have not yet made rounds, but we are anxious to hear if they have any new ideas of why Elli's blood pressures continue to remain on the lower end.

We are attempting to figure out how all of this NICU business works, Brian continues to call me a chicken because I get too nervous to ask some questions, like if we can use a laptop, but I finally did, and they said it was fine, so we will be doing a better job of keeping the blog page up to date, the last 48 hours have been so hectic it was hard to find the time to think let alone type on the blog page. I am hoping that I can get some good pictures today when the lights are on, because she is just so darn cute I can hardly resist. Thanks for all the comments, prayers, and words of encrouragment, we are hanging in there, and so is Elli!

Elliott

Just a few pictures so everyone can get a little sample of how beautiful our little Elliott is, we wanted to take more tonight, but were afraid because of how her blood pressure was when we left the NICU, will try to get some more of her cleaned up and some with dad in the pictures!

Elliott Arcile Reed ~ 6lbs. 8 oz

Elli Just a few seconds after birth

Getting stabilized in the delivery room.

In the St. Lukes Nursery awaiting the Children's Transport Team

Mom's first time to really "see" Elliott and to hold her hand at Children's Mercy just 5 hours after birth. Elli is on the "Jet" vent in this picture, not yet on ECMO.

First Steps were too big

Well to everyone sorry it has been so long since post, but alot has happened and as most of you know hospitals are like time suckers. First off last night we got Cassi a 4 hr pass and went to see Elli. We spent about 3 1/2 hrs with her and met too many people for me to remember. (sorry) Anyway her blood pressure was fluctuating about and after we got back to St Lukes (I crashed at 11:45)Cassi tells me mercy had called and wanted permission for a transfusion at 1:30. At 5 Cassi called mercy and Elli was still having a bad night.

I was ripped out of my sleep by our doctors voice this am checking Cassi and getting ready to dismiss her around 7. Nurses brought in some breakfast for both of us and I got in shower to be ready when Cassi was dismissed only Mercy called at 8 and said we needed to be down there Elli was steadily getting worse and she was going to have to be put on ECMO. So by the time we made it we got to see curtains closing in Ellis room and there must have been 20 to 25 nurses and doctors in her little room. Overwhelming is an understatement, I don't care how prepared I thought I was.

We then waited in a family room met various other people who started our orientation of the ins and outs of the hospital and this cdh baby thing. I think mostly to take our minds off of the other room. Elli's procedure really did not take very long for as intrusive as it is, a little over an hour. We then got to go back in and see her she looked a whole lot better than last night actually had a pinkish color instead of pale. We discussed the plans for the rest of the day with the doctors and figured our "4 hrs tour" was just about over so we got Cassi back to St. Lukes to get rest of stuff out of room and get discharged.

Cassi actually ate lunch at St. Lukes and pumped again before we finally got out of there. It wound up taking a lot longer to get back because we had to stop and shop for pants maybe I should say wanted to stop, seriously, I had been giving Cassi a hard time because she had not gotten any clothes and needed some sort of clothes (not all mine) to get by. So it was around 3 when we got back to find that Elli had a super tuff afternoon. The doctors have had a terrible time keeping her stats in the range needed. After discussing over options it wasn't hard to figure out how frustrated the doctors and nurses were are. More tests still cant be sure how much lung is on left side and seems like when right lung gets breath it pushes on heart and throws everything over making one side not work to its full potential. So blood pressure is till plunging way to low. Just when the medicine that was put in would take affect her blood pressure would surge too high. This seemed to be a circular pattern several rounds of meds on and off or lesser greater doctors in and out phone calls etc she seemed to get fairly comfortable with the idea of this machine working for her and not so much of her working for it. All of the tweaking seems to have finally helped and leveled off for now.

We got to Ronald McDonald house at around 10: 15 and got to turn on computer. Thanks for all the posts, prayers and support it makes it nice to read and see it all after a day like this.

I'm tired now. Thats all I want to say tonight .

love and thanks

Brian and Cassi

Ps sorry for not posting pics yet.

We have a new arrival

Elliott Arcile Reed was born today the 19th of august at 2:58 pm!!
She weighs 6 lbs 8 oz and is 19 and 3/4 inches long. And doing fine good so far.
Not much time so I will post again later.

Mr. Reed

No rest for the weary

Another long night last night. The recliner is not exactly 4 star. Well we have been started on pitosin again this morning at 6:30 so Cassi is (really has been all night) contracting again. She had prostaglandin gel at about 10 pm to help ripen the cervix. She slept good about an hour after the gel kicked in she said it was worse than the contactions she had earlier. She said it was a nonstop neverending contraction. So from 11 until around 2 she walked, sat, layed, hoped, but nothing seemed to help. She finally gave in and asked for some meds. Stadol, is what she got and it was the right stuff, for both of us finally got some sleep, brokensleep, until 6 am. So now we are waiting for cervix to be checked, get water broken, and get this rolling I am ready to see our little girl.... until later
Mr. Reed

This is the "Pits"

Monday, August 18, 2008 ~ 39 weeks 1 day

Got to St. Luke's this morning, and they didn't even know we were coming, very frustrating, but ended up meeting up with Ashley(the fetal-maternal coordinator) and she said that they all should have known, that the NICU knew, and so did Children's Mercy, but aparently the Labor and Delivery unit didnt. Needless to say it was a pretty slow start to the morning. They ended up starting my Pitocin drip until after 10:00. They got a good pattern going, and the contractions were coming every 2 minutes. I was definatley feeling them and towards the afternoon was getting quite uncomfrotable. At around 5 Dr. Gibbs (he's the on call perinatiologist) chekced my cervix and it had not changed at all from this morning. What a bummer. So instead of risking me delivering in the middle of the night, they decided to stop the Pit drip, for the night, let me eat, and start it all over first thing in the morning. Needless to say I will be resting up tonite for an anticipated long day tomorrow. Feeling good, Brian is going to go out and get me food, hospitality dining just isnt that appealing. We'll keep everyone posted!

The Anticipation

Sunday August 17, 2008 ~ 39 weeks

Spent the day with Brian picking up the garage and hanging out with the dogs, didn't do much else, seems like there was too much on our minds to do anything that productive, but it was so nice just to have the day for the two of us, Brian even made me fresh blueberry waffles for breakfast (he reminds me daily of how much I love him by all the little things). Finished packing up all our bags, I am pretty sure that I packed more for this trip than I did for our wedding/honeymoon in Jamaica! House is spotless, the dishwasher is running, trash all put out, last bills paid, all laundry done, and yet I feel like I am still forgetting to do something. I am sure that I will think about it tomorrow during labor, that is so like me. We will be leaving around 5 in the morning tomorrow in order to get to St. Luke's by 7 or 7:30, and as soon as we get settled and know that plan will let everyone know. We are so excited and so scared, words will never explain the anticipation we have had for our baby girl.