Playing the Waiting Game

SugarBear watching Elli sleep last night. She was pretty relaxed and stretching out her legs. This was after she got all worked up. They changed the dressing on her neck where the ECMO cannulas enter since they were saturated. Needless to say Elli didn't want any part of it. I can only imagine if she wasn't intubated, she would have woke all the babies in the NICU up with her screams! Her little face was bright red and she had one little crocodile tear roll down her cheek. The dressing looks so much better today, there is hardly any blood on it, so that is good, no more bleeding from the site! It did take a little Elli cocktail of Morphine and Versed, but she finally relaxed and was zonked out for several hours. Poor little baby, thankfully daddy was in the family room talking on the phone so he didn't have to see her upset.

This is Elli contemplating when she will finally get to have her surgery. Humm.......maybe tomorrow? I guess only the surgeons know for sure, wish they would let mom and dad know!

Check out my hair! I finally got it scrubbed down last night by Angel. It is so clean and soft! Maybe they should have left it dirty, mom wont keep her hands off of it!

Elli has really been stretching out her little toes lately, and they sure are long. She has feet just like her daddy, apparently a second toe longer than the big toe means she will be an athlete. Either way they are just too cute, love those little toes!

Elli had a really great night last night. I called around 4 and the nurses said that she was awake a couple of times but never got fussy. Basically it has been a pretty boring 24 hours. Elli's blood pressures have been great, apparently she didn't read the book on CDH and ECMO because she is not following any of the rules, she makes them up as she goes. Always keeping the Doctors and nurses on their toes!

As far as surgery goes, still hoping for tomorrow, but that is still up for debate. The surgeons should know sometime late this afternoon. So until then we are just going to hang out with Elli and let her rest as much as we can. The nurse this morning turned down the ECMO pump. Basically this means that Elli is doing just a little bit of the work, the pump was at 42o and is now down to 360. They might try to turn it down a little more this afternoon depending on her blood gases. If she starts retaining CO2 then they will not be able to turn it down any more, but as for now her oxygen saturations look good and her blood pressure is holding strong. Her mean is 60 right now, and the doctors said they would be satisfied with anything above 40...way to go above and beyond Elli!

We will keep updating with more info as we get it, I guess the longer they put off the surgery the more Elli can prove to the doctors what a strong little fighter she is. Hopefully they will be able to turn the ECMO pump down even more today...love that forward progress. As always I will keep taking pictures and posting them of little Elli ~ seems like every little thing she does is so cute, I just can't help myself. Thanks for all the continued support...we can really feel it!

Surgery Bumped

Daddy intently watching over Elli, letting her know that she needs to behave herself and keep those blood pressures looking good. Today Elli's blood pressures have been awesome, currently 61/44 with a mean of 49. Way to go Elli ~ you didn't even need that Dopamine.

Picture of Mommy and Daddy taken yesterday in the cafeteria by my friend Kelli.

Elli was awake for several hours yesterday just looking around, but behaving. Even when we were sitting in the chairs next to her little bed, she would wake up and try to peek out at us from under her little light blocker (the pink and brown polka-doted thing aka I call it the square of softness). It's so funny because she can't move her head so she looks at us from the corner of her eyes.

And now....FIRST KISSES!! Up until now Brian and I had not gotten to give Elli even a kiss. Late last night around 12:30 after the nurse changed Elli and did her assessment, Elli was still wide awake. The nurse said that she would take our first family picture, which she did and then she said she would take one of us giving her a little kiss. We were kind of shocked, since we were told that we couldn't really do that before, but of course we wanted to.

I took this picture, you cant really see it but Elli made a funny little face when Brian kissed her forehead, his mustache hairs must have tickled her.

Now Mommy's turn. I cannot believe how soft her little skin was to my lips, makes me want to cover her whole body in kisses, but I resisted. We will try to limit our lip germs to just "goodbye" kisses at night.

~SURGERY BUMPED TO THURSDAY~

Nothing big but the surgery that was tentatively set for Wednesday has now been moved to Thursday. Another baby came in and is going to go ahead of us since Elli is on ECMO and stable we get another day to rest. When we find out the time we will post, so everyone is aware. Again thanks to everyone for following our story, posting (which helps us a lot it is our nightly ritual to check all the posts back at the Ronald McDonald house) and your prayers. They all are appreciated.

Little Stinker

Last night Brian and I went back to the RMHC during rounds, I pumped and then fell asleep, as did Brian (no, he didn't pump), and by the time we woke up it was after 9! Yikes we had slept for almost 2 hours, apparently we were tired. We headed back to CMH to see Elli and that little stinker ended up being awake the whole evening and we stayed almost until 1 am. Needless to say we slept in this morning. I did call and check on Elli during my nightly pumping ritual and Angel said that Elli was doing good. Her blood pressure was continuing to improve and was actually a little higher than it had been when she was on the Dopamine. During her 4 am assessment Angel said Elli was wide awake, but not fussy or uncomfortable. I think that she went a full 24 hours without any PRN doses of Morphine or Versed. Also when Elli is awake, she had been cutting out the ECMO pump with her wiggle worm nature, but that didn't happen yesterday either.

Haven't been in to see Elli yet this morning, Brian's brother Nathan and his dad came down so Brian and Nathan are visiting with Elli right now, I am hanging out in the waiting area, anxious to see my baby girl. I have some really great pictures of Brian, Elli and I from last night that I will post later, I don't have an outlet out here in the waiting room. Check back later- these are super cute!

Surprise

What a day!! It seems as though we try to get past one day and then we get taken by surprise. Surprise!!! It started off very well with little Elli doing very well, considering the invasive nature of the weekend. She had leveled off last night and the night shift had gotten orders if she did so, to try to wean her off of her Dopamine, which seemed to be the only thing to keep her pressure up. Low and behold they got her completely shut off of it and she has done stellar all day even had her mean raise between 5 and 8 depending on time. Elli seemed to know she needed this.

While Cassi had gone on a trip to pump, as a part of her 3 hour ritual, it gives me some alone time with my little girl. While I was talking to her some of the doctors had came in and were discussing the situation of Elli and ultimately our family. Without Cassi here with me one of the surgeons gave me some important news on his way out of the room. With Dr. A and Dr. C discussing "rounds" their plan of attack for the day. Seeing that I was clearly distressed by what I had heard Dr C asked me to sit and listen. The doctors discussed the events of the weekend, and numbers, a lot of numbers, then Cassi walked in just as she did now so we are doing a computer pass as she types way faster than me.

After much discussion between the doctors and surgeons, and after multiple reviews of Elli's daily x-rays and ultrasounds, the final decision is for little Elli to have her repair surgery while on ECMO. The doctors have discussed the severity of her defect and because it is such a major one, they have ruled out the possibility of weaning her off ECMO before the surgery. Naturally when they told us this, I freaked out thinking that they aren't even going to give her a chance to prove herself. After Brian helped me calm down and I came back to reality, and the doctors explained their reasoning I started to understand. Because of the amount of bowel in her left chest is so great it has caused her heart to shift to the right side. So every time Elli tries to take a breath, her good lung ( right side ) compresses her heart causing it to not be an effective pump. Because the heart and lung are basically in battle for the same area, neither are able to work effectively enough to sustain her life. So even if they did try to wean Elli off ECMO, it would never work. So at this point, having her repair surgery on ECMO is the last and only option.

The risks of doing Elli's surgery on ECMO are very great, but with this being the only option, the surgeons and doctors have decided that Wednesday will be the day. Elli is theoretically not getting any better just lying around on ECMO since there is no plan to wean her off before the surgery, so at this point there is no reason to waste any more time before the repair. Over the next few days the plan is to keep Elli quiet and as stable as possible to prepare her for her surgery. They will be decreasing her Heparin (keeps her blood thin) enough to try to prevent bleeding complications after surgery but keep it high enough so that no clots develop in the ECMO system.

So as for now the game plan is for Elli to have her repair surgery some time on Wednesday, the surgery team is going to meet with us tomorrow to discuss the benefits, risks and possible complications and hopefully set an approximate time, pending no emergency surgeries arise. Elli will move into the adjoining surgery room either tomorrow or very first thing on Wednesday morning as long as everything goes to plan. There is another baby on ECMO in the surgery suite, but he is scheduled for a surgery on Wednesday also, but he will be going to the actual operating room. So after he leaves and the room gets a good scrub down, Elli will be on the move.

Of course this all came to a shock to Brian and I, we were not expecting her surgery this soon. While we knew that she would have to have the surgery some time, it is kind of a double edged sword. On the one hand this surgery will be the only thing that will save her life, but on the other hand we will get some real answers about the severity of the defect, the size or lack there of lungs and their ability to sustain life. So clearly we want her to have the surgery, it is just so scary to think that the surgery that will save her could also be what tells us if she can make it on her own. So with this news, we are asking for lots of extra prayers not only for Elli, but for the surgeons and nurses that will be holding our little Elli's life in their hands.

I guess that's it for tonight, it is all just a little overwhelming. We are just going to try to spend as much time with Elli as we can before her repair praying that she has the strength to get through the surgery and have the lung capacity to make it. Please keep Elli in your thoughts and prayers over the next couple days. Brian, Cassi and Elli

Always Changing

This morning the nurse manger Barb decided that Elli could have her scalp IV taken out because it was no longer good. She said that since it was a peripheral site and had been clotted off, it was safe to take it out without risking Elli bleeding. She used this special cleanser so the tape would come right off and it didn't even rip any of her hair out. Elli didn't even notice that she took it out, and didn't move the whole time...what a good girl! So now she is in dire need of a shampoo and style, but for now we will let her proudly display her bed head hair.

Last night when I got up to pump around 3:00, I called to check on Elli, the night nurse Angel who has been on with Elli 4 of the 6 nights she has been at CMH said Elli was doing pretty good. Last night before we left, Elli had her labs drawn. At CHM they work off a protocol that if her Hematacrit is below 40, then she can have a unit of blood, unfortunately yesterday afternoon her Hct was 40.5 so she couldn't have any. Both Angel and I were crossing our fingers that it would be just low enough that she could have a unit during the night to keep her happy. The results came back and it was just low enough that she got what she wanted. Angel actually pumped her fist in the air and said "yes". During the night they decided to wean Elli's Dopamine, she started out the night on 12 mcg and by this morning she was weaned completely off, although her pressures have been considerably lower today, but Elli continues to have great color, is profusing well, and keeps peeing like a champ.

Elli ran her roommate out,(she was stable enough to leave the ECMO room) and now we are back to having the room to ourselves for the time being. Dr. A talked to us this morning about possibly going up a little bit on the Dopmaine, but the team has not yet made rounds, so the daily plan is still up in the air. Also, the area on her neck seems to be about the same today as yesterday, but it hasn't really been discussed.

Another change is to our website. Last night Brian and I were talking about how cool it would be to know who was getting on, considering we know that not everyone that visits the site posts comments, so we thought we would put a hit counter on our website, and holy cow, by this morning the site had been visited over 600 times! That is so awesome to know how many times people are visiting the site to check on Elli's progress. Also we put a live feed at the bottom that shows where people log onto the site from, we couldn't believe how far away some of the people who visited the site were from. It's pretty neat if anyone wants to check it out, it is at the bottom right of our page. So yah, for the Reeds, things are always changing!

ECMO Day 5- Miss Sensitive

SugarBear helping to keep Elli quiet

What a tough day for mom, dad and Elli. I called during the night last night to check on her and the night nurses said she was doing fine, but when Brian and his mother got there, things were not going as planned. Elli was continuing to have blood pressure issues, this time worse than ever before. Brian said at one point her blood pressure was in the 20's and her pulse had dipped into the 80's. This crazy phenomenon happens when they switch out the lines, usually at 4:00 when they in theory "hang new bags of meds" but since she is so tiny, they are in syringes instead. Elli continued her crazy ups and downs with her blood pressure for most of the day, and when it was time to change the lines at 4:00, her blood pressure stayed low for almost an hour, and when the Dopamine finally kicked in, her blood pressure went up into the 80's and her pulse was over 140! The day nurse Tiffany was trying to keep her cool, but both Brian and I could see she was silently freaking out. I kept thinking she was going to call the doctors in, but never did considering they had been at Elli's bedside 5 or 6 times prior to this episode trying to figure out what all was going on. Elli finally did settle down, the nurses just think she is extra sensitive to the Dopamine and considering all the lines had to be changed, she goes without the Dopamine for a few minutes and in theory once it gets back through the lines she gets a big bolus, which shocks her little system.

Only to add to the drama, we had been noticing a puffy area near the ECMO cannula's on Elli's neck, and this morning when I walked in I noticed it was much bigger, as did the nurse. They called in the doctors and surgery team to evaluate it to make sure that her cannula's were not bleeding or leaking (if they were that could be a reason for the low blood pressures). They did an ultrasound around noon, but didn't see any active blood or fluid movement through the area, so hopefully it is just a little pool of blood under the skin from Elli moving so much. The doctors and surgery team decided that it was not a major concern and that they would just mark the site to determine if it was growing or not, and to sedate Elli more so she would not be moving around as much causing further irritation to the area. Needless to say, Elli had plans of her own, and decided that she wanted to be awake. The nurses tried to hold her arms and legs down and gave her PRN doses of Morphine and Versed but it still took almost 20 minutes before she finally settled down, and even then she was still fighting to try and keep her eyes open.

As for mommy and daddy, it was a long day of worrying about her blood pressures, the reasons for the crazy fluctuations and the worry that something might be wrong with the ECMO cannula's, considering they are Elli's life line. To add to we had many visitors (which we appreciate people coming and showing support) but with all that was going on, it was overwhelming, especially for me and I got a little emotional. Thankfully my best friend Darci came to visit and sat with me for a couple hours, let me vent, cried with me, and most of all was just there for me. It has been such a long day, hopefully tonight Elli will behave herself and stay quiet, if not the doctors will turn up her Morphine and Versed drips to make sure that she is still. So as of right now, we are just trying to keep Elli as comfortable and quiet as possible. It is so hard because I want to talk to her, but just the sound of Brian and my voice talking to each other makes her open her eyes and try to look around to find us, so it is really hard. We have been just sitting in the NICU looking at her, trying to say as little as possible.

Thanks for the continue support, thoughts, prayers and comments. It is helping us to get through each day! Lots of Love ~ Brian, Cassi and Elli

ECMO Day 4- Lots of Visitors

Aunt Staci reading Elli "How Much Do I love You" She was awake prior to the book, but I don't think she got to look at too many of the pictures.

Elli finally calmed down after they turned her to her right side, she tends to get cranky when they try to turn her to that side with her ECMO cannulas. Thankfully SugarBear was there to help comfort her, she was really latching on to him.

And last but not least, Elli was wide awake yesterday around noon. I got this amazing picture of her with her eyes wide open, and of course she was sucking on her vent tube again. Overall she was pretty awake for periods of the day yesterday, but we were able to settle her down without them having to give her too many extra doses of Morphine and Versed

Clearly this is my NEW Favorite Picture...Is it just me or does she get cuter every day? She was so wide awake in this picture, her eyes were so intent on focusing on me. I can't beleive how beautiful she is, especially when I see those big blue eyes.

Yesterday was pretty busy for Elli, my brother and sister-in-law visited around noon. We tried to out wait the doctors for rounds, but they were running very late, so we finally gave up and went to eat lunch with them around 1:00.

On rounds, they decided that Elli was peeing too much, and stopped her daily dose of Lasix because she was getting too dry, so at 4:00 when they changed out all the lines like they do daily, her blood pressure started to drop off, luckily I was pumping, because Brian said that it and her heart rate got pretty low, but once they got all the lines hooked back up and called the doctor, she perked right up. Brian said the doctor no more than got to the bedside and her blood pressure was back to her normal. Must just be the doctor's presence and Elli knows to straiten up. They did decide to give her a 30ml Normal Saline bolus because she had several huge wet diapers through out the day, and one more with a little poo in it. At 4:00 while I was pumping, we had more visitors, my sister Staci, and my mom and dad. Elli was awake for a little while and then we got her to fall back to sleep without any PRN meds. While we were out to eat during report time, the doctor decided to order another Normal Saline bolus just to make sure that Elli wasn't getting too dehydrated. She responded really well to both and her blood pressure stabilized out for the rest of the evening.

Elli did get a unit of blood and platelets last night, per protocol according to her labs. This is very normal for a baby on ECMO because the ECMO machine pretty much eats up the platelets and some babies need platelets every 6 hours while others need them daily. Elli has been needing about 1 unit per day. Brian said the heard some where that a baby on ECMO for 38 days will use 6 gallons of blood (don't quote him on that, I think he read it on another blog, but it was something like that). But I called at about 3:00 when I got up to pump to check on Elli and the night nurse Cindy said that she really liked her blood and platelets and that she was doing great and had been sleeping most of the night, not requiring any PRN meds, so that was great.

We are looking forward to another boring but busy day, as Elli is scheduled to have lots of visitors, my parents stayed in KC last night as did my sister, and Brian's mom was already here this morning to pick Brian up at the Ronald McDonald house around 8:00. We are just trying to cherish all these moments we have with Elli while she is on ECMO because of how stable she is, after she comes off ECMO and has her surgery, she will be very unstable as she will have to do all the work of her heart and lungs which she is not used to doing. At that time, we will not be touching her much at all and her stimulation will be almost zero. So for now it is so amazing to see her each and every day growing stronger and responding to our voices. Each day Elli is growing stronger and so are we, but the more she is awake, the harder it makes to leave her each night, that little lady really knows how to tug on our heart strings.

Thank you to everyone who continues to check the blog for updates, it is so nice to know that so many people are pulling for Elli. The outpouring of support has been so amazing not only Elli but Brian and I. We love to read all the comments on the blog, actually Brian is kind of addicted to them, and loves to tell me about all the people who are thinking about Elli. I will try to post some more pictures this afternoon and let everyone know if there are any changes. As for now, The Reed family continues to gain strength and hope each and every day!