Pleasantly Surprised

Elli after surgery with her Silo, it's all wrapped up with gauze, but inside the plastic bag holds her stomach, small and large intestines and part of her spleen. The bag is sewn into her abdomen and when it is time, the surgeons will reduce or put the intestines back into her abdomen a little at a time. Elli doesn't seem to mind the new placement of her stomach, and actually her heart loves it!

Elli has been so stable it's almost scary. The doctors continue to be pleasantly surprised whenever they talk about Elli and how well she has done since her surgery. We have been holding our breath waiting for something to change...and well something did. Not major but Elli's chest tube has been putting out a little more drainage that it had been. 10ml/hr for the last 2 hours as of 10pm. Dr. H the on call doc for tonight thinks it might just be a positional thing because the nurses have Elli lying slightly to the left side, so it might have been a pocket of blood that is just now getting a chance to drain. Either way they are keeping a close eye on it and replacing the volume out with packed red blood cells.

In other news, the ECHO came back good, structurally Elli's heart is perfectly normal, other than it being slightly smaller that other babies her size. Dr. K said that now that we know it is structurally fine, it just has to prove that it can do the work it needs to do. And I guess we will be finding that out tomorrow. Yes that is right, Elli is going to start being weaned off ECMO TOMORROW!! Every morning they do an oxygen challenge on Elli and this morning she did awesome, her blood gases have looked great all day and they have the ECMO pump turned down to 300, and have had it there for most of the day and Elli hasn't been able to tell any difference. Her blood pressure continues to be stable and is a perfect 60/40 right now. The plan for tomorrow is to slowly turn down the ECMO machine while turning up the vent every hour and doing blood gases to ensure that Elli is tolerating it well. This was the plan this morning even before the chest tube started putting out a bit more than before. Dr. H said that if her chest tube starts to put out more blood volume than can be replaced (not the case now) than they will have to start the weaning process earlier and do it quicker. Dr. H also said that from how Elli has responded today and how well she did with her oxygen challenge, that she thinks that the weaning should go well tomorrow, but there is always the chance that Elli will have to go back on the "jet vent", nitric oxide, or other means to keep her airways open. We are still running the risk of pulmonary hypertension, which would be the reason to have the different vent. Hopefully everything will go smoothly and Elli will be able to tolerate being off ECMO with the conventional ventilator but we'll see tomorrow.

So tomorrow is going to be another HUGE step for Elli. Basically we are going to find out if her heart and lungs are able to support her, and we thought the surgery was scary! We will be posting more often tomorrow, I got a little lazy today considering it was so quiet down here in the ECMO room with no other babies around.

In other news, Brian and I did sneak away for a little while this afternoon and went and ate lunch at Famous Dave's and then went to Nebraska Furniture Mart. Since we are sort-of in the process of moving, we decided to get new living room furniture. We got a sectional, recliner, dishwasher and a stove. It was funny though, we spent a little while picking out the sectional and recliner, but by the time we made it to the appliances, we were ready to be done to get back to see Elli so we chose them in about 10 minutes. It's funny how much we miss her when we are away, and it was only for 3 hours! Either way we did the no financing for 30 months and all the items are going to be delivered to our new house the middle of September. It will be so nice to bring Elli home to a completely remodeled house with new furniture and appliances.

Mom's on Diaper Duty already. The nurse asked us both if we wanted to help change Elli's diaper, and Brian quickly said "I'll run the camera, you can do the diaper" Elli didn't mind a bit, but it was a little tricky with the silo, chest tube, abdominal tube, the cardiac lead wires and the temperature probe all to deal with, but I think it went pretty smooth.

In still other news, our first ECMO roommate Meghan, is doing very well, she has been extubated for a couple days now, has no more IV's and is drinking mamma's milk. She is doing so great and should be heading home relatively soon. Also, my friend Heather from St. Francis Hospital recently had her baby boy by c-section, he weighed over 9 pounds and was 23 inches long. So a big Congrats to the Archer family. And Brian just found out the the Koger family is back in the hospital with Wyatt, please keep their family in your thoughts and prayers as well, as he reherniated and had to have surgery this evening. He came out of the surgery with a super fancy patch (made of his other patches, Gortex, Alloderm and wire) and the plan is to extubate him tomorrow. There is a link from our page to his if you want to check up on him tomorrow. Well it's getting pretty late. Going to give Elli some kisses and then head back to RMH to try to get some sleep in anticipation for the weaning tomorrow. Thanks to all who have been so positive through our entire journey, the comments keep us positive as well. Thanks again! Brian, Cassi and Elli

Before...and After

Elli's before and after x-rays. The After is on the Left side and the Before is on the Right side.

We finally got to look at some of Elli's x-rays today and I got the opportunity to take get a before and after picture. In the before picture, the cloud looking stuff on the Left side of Elli's chest is stomach and bowel. We found out from the surgeon that Elli's defect was so extensive that she was missing all of her posterior diaphragm, and the entire left side and had only a very small ridge anterior. They used an Alloderm patch and sewed it into the muscles of the chest wall and to the very small area of diaphragm on the front side of her chest. With this extensive of a defect we knew that the liver was "up" but didn't know to what extent. 2/3 of Elli's liver was in her chest cavity and actually went past midline and was behind her heart pushing on it during her development. This was much more that originally thought. Since the liver was so contorted, the inferior vena cave (large artery that supplies blood to the lower extremities) had been twisted, a possible reason for the low blood pressures. Now that the liver is back down where it should be, the doctors were concerned that there was restricted flow to the lower part of the body, and by an ultrasound of the liver yesterday, it showed decreased but adequate blood flow. Since the liver was in such an contorted angle, they believe that it had been getting congested causing it to become swollen. Because the blood flow from the spleen travels through the liver on it's way back to the heart, the spleen also had blood flow restrictions causing it to become swollen also. This is the main reason why Elli has a silo. Her liver was so large and swollen that it was the only organ that would fit back into the abdomen. So far Elli's profusion to the lower extremities looks good and all her liver enzymes and studies look normal. The nurse today told us that on paper Elli looks "textbook" and all her numbers look awesome.

Also by the chest x-rays, in the before picture, Elli's heart is very much on the right side of her chest and on the after, it is already making it's move towards midline. It should be pretty much under the sternum with the ventricles angling to the left side. The right lung in the After picture is becoming more inflated in each x-ray and the doctors are pleasantly surprised by it's size. The light shadowy looking area on the left chest in the after picture is fluid, NOT lung. This is not uncommon, the doctors expect the body to fill in that space with something, and as long as it is not blood, they are happy. Just to clarify even the very dark dot on that picture is NOT lung. The lung "nubbin" was very hard to see, even when the nurse pointed it out to us. It is a very light area near the Left clavicle. The doctors also noticed on the chest x-ray the size of the heart overall. Dr. K is concerned that Elli's heart is on the small size because of the amount of liver that was compressing it. Basically the right lobe of the liver slid up through the defect and around behind the heart causing it to become compressed. This may also be part of the reason for the low blood pressures. Each time the left ventricle would try fill, it was only able to expand to a certain point because of where the liver had been developing. The doctors are concerned that the left ventricle may also be on the smaller side, so they did an extensive ECHO of the heart today, but we don't have any results yet. Humm...is everyone overwhelmed with medical jargon? Sorry, some of this is repetitive, but I just wanted to try to get it all explained since I only touched on bits and pieces of it in earlier posts.

As far as the Silo goes, Elli will probably have it for quite a while. It will take some time for the liver and spleen to reduce in size and Elli will need to continue to grow to make more room in her abdomen for all of them to fit back in. Elli has had an awesome day, she is peeing like a champ, which shows great profusion to the kidneys. Elli is still showing no signs of bleeding. Her vital signs and blood gases have looked great all day. She didn't even get any blood this afternoon, only platelets. Basically Elli has not gotten any more blood products that she had been receiving before surgery. ECMO babies tend to "use up" blood and the machine tends to "eat up" the platelets. Some babies require blood and/or platelets every 6 hours but Elli has been on the trend to get blood and platelets once a day, and usually at different times.

Elli was awake off and on a couple times today. She was all bright eyed when Dr. K came to speak to us this afternoon. She was awake and looking around without being uncomfortable or agitated. She has not been cutting out the pump at all and her blood pressure has remained awesome. Currently it is 62/43 with a mean of 49...Way to go Elli! The doctors are still shaking their heads at our little lady. But Dr. K did make a good point this afternoon. He said that each of these CDH babies write their own book and it is his job to use his experiences to read what they are writing not use his experiences to try to guide them. That seems exactly what they have been doing with Elli, she writes a new page everyday, the doctors read it and decide what actions to take by what she dictates. We have been so impressed with the doctors here at CMH, they have been so great with Elli and trying to figure out what this little lady needs.

Brian and I are looking forward to a boring weekend of staying stable. We are hoping that Elli continues to look as good as she does. The doctors warned that after surgery, there are a lot of fluid shifts and the fluid tends to seep out of her cells and into her tissues causing her to get very puffy. Because this happens they are forced to give fluids to replace the shift, causing even more edema, which is a vicious cycle. So far Elli has had no extra edema other than her head. Her poor little head, the back of it looks like a little block, but as far as her entire body, she looks great.

Ok this post is getting excessively long, but I think think that I have all the details hashed out. Well it's after eleven, I think that Brian and I are going to stay until around midnight and then call it a day. It has been such a refreshing and uplifting day, which I think both Brian and I needed. I was saying last night that I felt like I was more tired than the night that I had Elli. I guess that we were just both getting worn down. Brian is now humming a little tune to Elli standing next to her bed, and it is so cute! He is such a proud Papa! Guess that's it for tonight. Let us know if you have any questions or just don't understand any of it. Thanks again for all the continued support, thoughts and prayers...I am pretty sure they worked yesterday. Now we are moving onto other prayers ~ lung growth and function, decreased liver swelling, and good reports from the ECHO and so on and so forth. Gosh Elli sure does ask for a lot, but her dad and I know she's worth it! Cant wait to hear more good/unexpected news! Take care...good night. Brian, Cassi and Elli

What Rules?

Well, clearly Elli once again did not read the book on surgery on ECMO. Elli does not follow the rules but in a good way. She was incredibly stable through the entire night and still is doing well this morning. Elli has had minimal bleeding out of her JP drains and her vital signs are continuing to amaze us. We were worried that with all the fluid shifts from surgery that she would start to look really swollen, especially in her head, but so far not too much difference from before the surgery so that is a pleasant surprise. This morning they turned down the ECMO flow to 360, they had turned it up to 420 during the surgery to ensure that she would be as stable as possible. They also changed some of the vent settings this morning, but not exactly sure which ones. We missed rounds this morning because we slept in a little bit since Elli is doing so amazing and since we stayed at her bedside until after 2 am! We are now waiting for Dr. P to come around to visit with us and let us know any changes and what the overall game plan is going to be. As far as the surgical team goes, they said that they won't try to reduce her silo (putting her intestines back in her belly a little at a time) until she has been weaned off ECMO.

Brian and I are so blown away by how well Elli is doing, we were prepared for a long, tough night, but Elli proved us wrong. We actually had a couple of tears of joy this morning when we heard how amazing she had done throughout the night and this morning, it is still a long bumpy road, but Elli is doing exactly what she needs to do. She is resting up now, but a little bit responsive. Dr. T had the nurses turn her Morphine up to 60 last night as a precautionary measure to ensure that she would be nice and quiet through the night and not be kicking around. So as of now we are still playing the waiting game. Will post later any new news or updates.

Surgery Update #2

Just thought that I would give everyone some more details on how the surgery went. As you can tell, Elli has a silo. It is pretty overwhelming to see at first, so we will post some pictures of that at a later date. Elli didn't have too much bleeding and is actually doing very well and has stabilized out, hopefully for the rest of the night. Her blood gases looked a little on the acidic side so they are giving her a normal saline bolus now, but her hemoglobin and hematacrit are looking good so far indicating that she is not actively bleeding anywhere. Her two drains, one in her left chest and one in her abdomen, are draining some blood but not too much so far. As far as lung tissue goes, unfortunately Elli basically has no left lung. The lung tissue that is there is very, very small also called a "nubbin" by the surgeon. So basically all oxygenation will have to be done by the right lung, which by the most recent chest x-ray after surgery, looks pretty good. Dr A. actually is very pleased with the size and said that in some cases, the right lung will grow to try to compensate for the lack of left lung. I guess this is the silver lining in this whole ordeal. The true test of it's functionability will be when the doctors start to wean her off the ECMO machine (24-48 hours from now) as long as Elli doesn't develop any bleeding issues. So basically we are back to the waiting game. As for right now Elli looks very stable, her blood pressure looks great as do the rest of her vital signs. The nurses are going to draw blood gases again at 1 to make sure that it was a fluid issue and not an oxygenation issue. So as of right she is stable and doing as well if not better than expected. Will post how she is doing in the morning. Thank you all so much for the continued support, just knowing that everyone was thinking of Elli and us was awesome. All the comments really made us feel so blessed that we have such a strong support system. Thanks again Brian, Cassi and Elli

Surgery Update

Elli made it through her surgery which lasted about 2 hours. The defect was very large as we knew it would be. They used a Alloderm patch to do the repair, and because of the amount of liver that had been in the chest, the surgeons had to create a silo to put Elli's stomach, intestines, and part of her spleen in. She looks pretty stable for now, will post more indepth later..going to see Elli now.

On the Move ~Videos

Brian took this video this morning while we were waiting for Elli to go to surgery.

It took a couple respiratory therapists and 3 nurses to move Elli literally 20 feet to the operating table. They had to make sure that none of her lines got kinked or crossed. Brian and I held our breath the whole time. We were so glad she didn't have to go to an actual OR.

Moving little Elli onto the operating table...more nervous mom moments.

It's started

Elli stretching out before her surgery, that girl's got some long legs!

All cozy on the surgery table after they but a BearHugger under her and warm blankets on top. After they moved her she was pretty cranky, but once those warm blankets hit her she was right back to sleep and looked so comfy cozy.

Elli in her "New Room" ~ the surgery suite. She will be staying in this room for a couple of days so the nurses won't have to move her to increase the risk of bleeding.

All ready for surgery....just waiting on the surgeons.

We stopped by to see if Elli had started her surgery, and at about 4:00 the anesthesiologist and surgeon walked in...we gave Elli our final kisses, told her how much we loved her, and said one last prayer. So as of now, 4:32 she should be well on her way to a repair. Brian and I are waiting in one of the Parent rooms that they use before babies get discharged. The parents stay the night with the kiddo and do all the cares to ensure the parents know what to expect when they are at home with their baby. It has a bed and a TV so Brian is resting on the bed and watching TV, just waiting for the surgeons to come in and let us know how our little lady did.

Playing the Waiting Game

So Elli has not started her surgery as of 3:25. She is in the room and everything is ready, just waiting on the surgeons to show up. I'm going to pump, will post when she goes, and we have some cute pictures and a video when I get back.

Game On

We have the green light, Elli will be having her surgery sometime after lunch, the plan between 1 and 2, there is a baby in the surgery suite right now, but he will be moved out and Elli will be moved in so she can get settled and stabilized on the OR table for about an hour before her surgery. She is going to get to stay in the surgery suite for a couple of days pending there are no emergency cases that need the room. This is a big relief to Mommy and Daddy since she will be so critical after surgery and any movement will increase the chance of bleeding. After much debate this morning, the doctors and nurses decided that they would wait until after Elli's surgery to put in a central line. As of right now Elli only has her ECMO cannulas and one small IV in her foot. When it is time to wean her off ECMO, all her meds will have to find another way and since the IV in her foot is so small, and also TPN (kind of like her food for now) cannot be given through a peripheral IV, she needs to have a central line placed. We were hoping that they would do it before surgery since afterwards, I don't want her to get worked up, but I guess the decided that they didn't want to do it while she was on so much Heparin.

As for last night, I called and talked to Elli's nurses around 2 after I got done pumping and Elli had to have her ECMO flow turned back up slightly. Her blood pressures were staying fine, it was her blood gases that didn't look as good as they were with the higher amount of support. Last night her gases were slightly acidotic meaning that she wasn't able to blow off enough CO2. The reason for this is that because Elli's vent settings are so low because they don't want to expand that right lung too much which would cause the heart to be compressed, her lungs were not doing enough of the work to get rid of the extra carbon dioxide. Dr. P did not seem to concerned with this since none of the vent settings were changed, he wouldn't expect her to be able to do the oxygen/carbon dioxide conversion herself. So we didn't really take it as a set back, more of a trial run before surgery.

Elli has been really sleepy all morning, even when they turned her at 8:00, she didn't even wake up, which usually makes her pretty cranky. The nurses have not given her any PRN meds since they changed her cannula site on Tuesday. I guess she is just getting her rest for the big afternoon. I hope that she wakes up just a little bit before the surgery so I can get one last peek at those beautiful blues before surgery. Don't worry we will keep posting throughout the day with updates on Elli! Thanks to everyone for the comments, it was so awesome to see how many people posted when we got to the hospital this morning. Check back later..... Brian, Cassi and Elli

Finally...Daddy's got a job

Since Elli has been sucking on her ET tube so much over the past few days, our day nurse decided that she might like to try a pacifier. The results are pretty evident.

This didn't really come to a surprise to Brian or I because Elli was constantly sucking her thumb in the ultrasounds, and I will admit; I too was a thumb sucker...for longer than I would like to say.

The only thing is, that with the ET tube, someone has to hold the pacifier in Elli's mouth because she can't get suction on it with everything else that is in her mouth. That is where Daddy comes in, he is now the OBH ~ Official Binki Holder!

The doctors made rounds this afternoon around 4 and the plan for Elli is to have her surgery around 1 tomorrow. Hopefully she will be able to have her surgery in the adjoining surgery suite, that is still up for debate since another kiddo may be returning to it after his surgery. Also they turned Elli's ECMO pump down more this afternoon too! It is now down to 300! Way to go Elli. Even the doctor that didn't give us much hope that first morning that Elli went on ECMO said that he is seeing some really positive things from this little lady and she is really holding her own. He said that he has renewed hope in her outcome, so coming from him, that is pretty amazing...but of course her mamma already knew she was resilient. The surgeon did say that Elli may come back from surgery with a silo. A silo is a bag that they will use to put in any extra intestines that don't fit back into her little tummy, so that might be an option we'll just have to wait and see.

Overall we are super excited and nervous. I think we have geared ourselves up for the surgery and are ready for Elli to get on with the healing process. We will be keeping everyone posted as soon as we know more news. As for now, we are going to spend a few hours with Elli tonight and try to get back to CMH good time in the morning to spend as much time with Elli before the surgery as possible. Hopefully no more switches in the surgery schedule!

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!