No Changes

Just thought I would put a picture of our dogs on Elli's blog considering they are soon to be "big brother and sister" to Elli. Molly is our black lab and Trigger is our yellow lab.

Oh yah we, or at least I miss Gabby our cat too!

Elli had her eyes open for a little while yesterday afternoon. Brian enjoying some Father-Daughter bonding time. It is so reassuring to see her eyes open, but so hard at the same time.

Her little black belly button is just about ready to fall off.

Elli spent almost 20 minutes yesterday just looking around and up at us, without being fussy. She is just so adorable, we did sneak a few kisses when nobody was looking.

Elli continued to have a fairly stable day. Her satruations have not dropped below 80% all day, even with cares and diaper changes. Her blood gases have stayed almost identical, so on that note, as long as the 1 o'clock gas looks the same, that will be almost 24 hours of acceptable gases...Way to go Elli! Talking to the doctor this evening, we know that Elli is still very sick, and this is still a very serious situation. It might be a "honeymoon" period for the new drugs, or it might be the rest that she needs to move onto the next step. Dr. A said that with the gases that Elli has been having, normally she would try and wean the vent settings, but with all that she went through last night, she is going to let Elli rest up and my guess is when Dr. K gets back tomorrow he will be making some changes, but hopefully they are small and slow. Today's chest x-ray looked a little better than last night. It still appears that Elli may have some atelectisis (collapsed lung tissue) in her right upper lobe, but the doctors still can't determine if it is that or a shadow from the hematoma from the ECMO cannulas. Her left chest cavity appears to have some air in it. It could be air around the left lung bud, or possibly the left lung bud was over inflated and essentially "popped". Either way, it appeared last night that all the extra air on the left side was squishing the heart and right lung. But now today it appears that the chest tube is keeping he air to a minimum and the heart is a more effective pump as evidenced by her better blood pressures and decreased pulse rate.

Since things are looking about as stable as they can be without actually being stable, I think that we are going to call it a night much earlier than the last several. It wont be too early considering that it is already after midnight now. Brian did get to watch part of the Bearcat game this evening, but it started at 6 and with shift change he missed part of it because the Internet at RMH is not near as fast as at CMH. Wanted to put Elli's NWMSU booties on, but she doesn't really have any hands or feet without anything on them (arterial line, midline IV accesses, and the saturation monitor) so maybe the next game she will get to show her Bearcat pride. Brian is sitting by Elli right now and she must like it because her saturations are 88%, that is about the highest they have been all day. Heck they just hit 89%, she must know that her daddy is sitting next to her sending his love. Guess that's about all I know for tonight. Just trying to take it one day at a time and enjoy the time with Elli each day, especially when she wakes up just enough for us to get a glimpse of her beautiful blue eyes, it seems to make the long day so worth it. Keeping the faith in KC. On a side note, Brian and I are so home sick, just letting everyone know that we are thinking about our family and friends and know that we miss you all very much and cant wait until Elli is stable for everyone to come down and meet her. I cant believe I am saying it but I think that I miss Burlington Junction. Looking forward to a restful night for all three of us. As always thanks for the continued support. Brian, Cassi and Elli

Day 18

Brian and I finally called it a night, or morning however you look at a little before 5. Her next gas wasn't until 6 am so we decided that we had better get some sleep. Elli has been looking better this morning and into the afternoon. Her blood gases continue to be more stable, CO2 levels in the 40's and O2 levels in the 60's. They defiantly could be better but as long as they don't start going down, the doctors are willing to accept these numbers. Her saturations have dropped a little bit, they were in the upper 80's and now are sitting around 81-82%. The doctors did increase her Epinephrine just slightly to try and keep her saturations up. Also on her morning CBC her C reactive protein (indicator of infection) was up to 12 where it had been 8, so they once again switched around her antibiotics. They stopped the Flagyl and started Diflucan. The nurse Phylis has been giving Elli her PRN Fentanyl and Versed about as often as she can to try and keep Elli calm so we wont fall into the afternoon funk that has been the trend for the last few days. Not much else going on, getting a chest x-ray and keeping quiet. Much calmer than yesterday, but we'll see how the rest of the night pans out.

3:15 Gas

Just got the 3:15 gas and it looked so much better. Elli's pH is in the normal range, no base excess, her CO2 was 40 and O2 was 56.9. So much better. Looking forward to more of these. Thanks Elli, now mommy and daddy can breathe.

Giving Us a Scare

It's 2:30 in the morning, Brian and I have been sitting/standing by Elli's bedside all day. It has been a really rough day, Elli's saturations have been hovering in the low to mid 70's most of the day. When we got back from shift change Elli didn't look very good at all. She was dusky and bluish around the nose and mouth. The doctors were very concerned because of the consistantly low saturations, and by the looks of the x-ray at 10:00 and today's ECHO it looked like it was more a of a heart problem then a lung issue. The doctor flat out told us that Elli was in serious trouble and "in heart failure." Well 2 hours and 30 minutes later they started some new meds. Brian and I were very upset thinking that we were loosing our baby and when we asked the doctor about it she said that she meant that Elli "could" go into heart failure...very big difference from "could" and "is". Either way after much pacing and crying they started Elli on two new drips. They started Epinephrine to raise Elli's systemic blood pressure, and then started a prostaglandin to try to make the right side of the heart not pump as hard. At first it looked like it wasn't going to work, her blood pressure and pulse sky rocketed and her oxygen saturations dipped into the low 60's, but slowly the saturations started coming up and her blood pressure leveled out. It wasn't until after all the drips were started that the doctor told us that she had never tried this combination before...not too reassuring, but she had been discussing Elli with several other doctors in the NICU and PICU throughout the day. As of now Elli's saturations are sitting around 89-90 which is much better. The nurse is drawing blood gases every 2 hours, so hopefully the next one will look better. Elli was in metabolic acidosis earlier, but her pH seems to be rising slowly so that is a good thing. Dr. M would like to see Elli's blood gas level on oxygen in the 60's which it was 38 on the last blood gas. The next gas is not until 3:15 which we will be staying to hear the results.

As far as Elli goes, she looks comfortable and has not been grimacing or acting like she is in pain for most of the evening. There was a slight miscommunication between the resident doctor and the nurses. He told the nurse not to use the PRN Fentanyl that they didn't want her blood pressure to drop too much lower, well the last day and a half the game plan had been that any time the nurses were to do cares, before they even touched her they were supposed to give a PRN dose of the Morphine (yesterday) and Fentanyl (today). So when I was helping the nurse reposition Elli after shift change I noticed that she was very fussy and her saturations were dropping and I asked if she had given the Fentanyl yet, and she told me that the resident doctor had said not to. Needless to say after saturations dropped at one point in the 50's the resident doctor came around and asked why she was so low. Well clearly she was upset and had not had any pain medicine. Either way he said that he mis-spoke and that she could have her PRN Fentanyl when the nurse had to do cares. It only took 3 hours and two new medications to get her saturations up to where they started before her repositioning and diaper change. I hope that this information about the PRN's is well circulated through the doctors and nurses so Elli won't have to battle to keep/get her saturations up. I don't mean to vent, but for a while Brian and I were pretty ticked. It didn't help that we could clearly see that Elli was not doing good so that just added to the frustration. Things are looking a little better now, defiantly not out of the woods by any means. But as always Elli is a little fighter and is trying to hold her own. Trying to keep the faith. Brian, Cassi, and Elli

Day 17

Elli had a pretty stable night last night, she seemed to really like the Dopamine and was even awake for about 30 minutes last night around 3 am. We stayed until almost 4, too nervous to leave, but our tiredness got the best of us. When we got here around noon, Elli was up to her old habits, having bouts of fussiness and saturations in the mid 70's. We have yet another new doctor today, Dr. M. She ordered another ECHO of Elli's heart, and basically it shows that her pulmonary hypertension is still very high. The doctors are trying all they can to help Elli be comfortable to decrease the resistance on the blood flow. Because the anatomy of her lungs is so different because of the growing conditions, her lungs are very muscular and sensitive. They essentially "spasm" every time that Elli is touched, in pain, or gets upset. They did change her PRN pain medicine from Morphine to Fentanyl, it is in the same family of drugs as Morphine but works quicker. The down side is that Elli will build up a tolerance to it quicker than she will on the Morphine, but as for now, the doctors are more concerned with keeping her as comfortable and pain free as possible. Our new doc, Dr. M did some brainstorming with some of the other Neonatologists on other teams here at CMH and they decided that they would try one more drug to try and relax the right side of her heart to decrease the pulmonary pressures. It is the equivalent of Viagra and has to be taken orally. So the nurse gave it through her OG (oral-gastric) tube and is leaving it clamped off for an hour. Also they decided to change her chest tube from bulb suction to a water seal chamber to see if she had an air leak because it stopped draining in the night. So far no leak, but very little output, so it might have a clot somewhere, they are unsure. They doctors have left the vent settings alone, thinking that it has more to do with lung/heart compliance and turning up the vent settings to try to oxygenate will only further agitate the already sensitive lung tissue. So of course we wait and hope that the fine tuning med changes will help decrease the pressures. This is so common in babies with CDH and we knew that Elli was likely to face this sort of problem. Basically we give the meds and her time to work things out, after all she is only 2 days post surgery. So of course more ups and downs, just tyring to rid this thing out. Keeping quiet, and our hands off. Brian, Cassi, and Elli

Shhh....Elli is Sleeping

Well since the 4 o'clock gas things have been pretty rocky. Elli's saturations were down in the low 70's and hung out there for a good 4 hours. Of course today was going to be tough anyway knowing that Dr. K was going out of town, and then Elli decided that she wanted to "act up" Anyways 3 chest x-rays and and abdominal x-ray later it was determined that Elli's right lung was over inflated. This is a problem because over expansion causes the HFOV to not be able to "shake" her lungs as much thus reducing the amount of CO2 that can be blown off. So of course the doctors tried to mess with the vent settings, but really to no avail. Turning down the MAP and the Delta P up seemed to slightly help the right lung for a very short time period, but they were concerned that the left lung was now being under inflated. Several blood gases later it was determined that Elli was still not ventilating or oxygenating very well, but they couldn't really find a reason. They ran a CBC (complete blood chemistry) to determine if her white count had risen (would indicate infection) but it didn't really change. The doctors decided to stop the Gentamycin and change to a more broad spectrum antibiotic, and decided to add Flagyl (an anaerobic sensitive antibiotic that works on bugs found in the gut) in an effort to cover all possible infective organisms. Really none of the cultures or blood draws were leaning towards infection, they were just concerned about the recent surgeries and the fact that she did have a temperature during the night.

At 7 o'clock we had to leave for shift change which about killed us, knowing that Elli was still having saturations between 71-76%, and knowing the doctors really didn't know how to bring them up. They tried changing out her endotrachial (ET) tube because it was the one that she was intubated with at birth and it had developed an air leak. This was causing the HFOV to not be able to keep a constant mean airway pressure. Even after the ET change her saturations didn't improve and the doctors were considering trying Elli back on a regular vent since they had decreased the HFOV settings down to where it wasn't really doing a much better job than a regular. So we didn't know what to expect when we got back after shift change.

The new attending doctor on for tonight, Dr. M decided to try starting Elli back on her Dopamine (they stopped it). He was concerned that Elli's pulmonary hypertension was getting worse because of the over inflation and that the right side of her heart was having too high of pressures causing deoxygenated blood to be shunted to the left side causing it to mix with oxygenated and then recirculation in the body thus causing the overall decrease in her oxygen saturations and increase in the amount of CO2 in her blood. Well as of midnight her oxygen saturations have been looking much better averaging between 85% and 90%. And also her last blood gas looked slightly better, she was very acidotic earlier today and that is starting to get closer to normal range. Normal pH is between 7.35-7.45 and Elli's blood gases today have been running around 7.15, but the last was 7.25 so it looks like she is going in the right direction. Also her base excess (measures the compensation factor in metabolic acidosis) was around 7-8 and on the last gas was a little over 4, so hopefully the next gas which our night nurse Kelly (has been on the last 3 nights) is currently drawing, will continue on the same trend.

Elli seems much more comfortable, it looks like the increase in the Morphine drip has helped as well as the nurses staying on top of the pain with extra PRN doses of Morphine and Versed whenever they have to do any assessments. Basically we are trying to stay super quiet, and not do anything that could agitate her. This means no touching or talking. It's hard, but whatever is best for Elli is what we will do.

Brian and I both knew that this was going to be the trend for a little while, things look good then they take a dip and start to look better again. I guess we were just hoping that last night Elli was going to "turn the corner" so to speak and start steadily improving. It is so hard not knowing what exactly is going on, and seeing the doctors puzzled really puts a strain on us emotionally. This afternoon was pretty trying, but as of now Elli seems to be doing a little better, and will hopefully continue to become more stable as the doctors try to determine the best avenue to pursue. I am sure we are going to stay at the hospital late again tonight, even though we are unable to touch or talk to Elli, we feel better knowing that we are at least near her. As always taking it day by day and thanking everyone for continued thoughts, prayers and support. (sorry no pictures...it's kind of like a museum, no flash photography)

Sorry just one more thing, last blood gas just came back, looking better, seems like if this trend will continue she will be back in the acceptable parameters soon. But shh...we aren't going to tell Elli she is doing better, we'll let her sleep.

Pain Management

Overall on a whole, Elli had a good night and day today considering she had surgery yesterday. Last night when Brian and I were getting ready to leave, I went to give Elli a good night kiss and she felt very warm to me. I took her temperature and it was 38.1 C (around 100.6 F) and I noticed that she was sweaty and had little tiny water blisters on her face. Of course this was around 2 and our nurse had just gone to lunch so another nurse was babysitting. I moved the radiant warmer off of her and she finally started to cool down. Needless to say we didn't leave until around 3:30 when Elli finally calmed down after another round of PRN pain medication. Last night at midnight Elli had her best blood gas ever, luckily they were cautious and didn't try to change any vent settings last night and let her rest and recover from the surgery.

This morning Elli was doing very well and the nurses were able to decrease the MAP on her vent settings (helps with oxygenation) and lowered the FIO2 (% of oxygen delivered via the endotrachial tube). I guess that once all the sedation meds from yesterday's surgery must have worn off because Elli started getting really fussy around noon, and her saturations were hanging in the low 80's. Even daddy holding her hand and humming a little tune didn't seem to help her calm down. She had been thrashing her arms and having a lot of facial grimacing, so Dr. K had the nurse turn up her Morphine drip to 100 and said that she could give her an extra Morphine bolus and that really seemed to help with the pain. She calmed down for about an hour until she had a wet diaper. For some reason she doesn't like to sit in wet pants...cant imagine why. Hopefully with a couple more Morphine boluses and increasing the rate, the doctors will be able to get on top of her pain which will help with her numbers overall. After they bolused her the first time her oxygen satruations were in the mid 90's, her blood pressure was lower (oh yah, Elli now is having high blood pressures 80's/60's, so they stopped her Dopamine drip) and pulse.

As far as her blood gases go, they have been pretty consistent, no real ups or downs. The next gas is at 4 but who knows what that will look like. It doesn't sound like Dr. K is to intent on weaning the vent settings until he can get Elli's pain manageable, so hopefully that will happen tonight. Brian and I just feel so helpless that we cant really do anything to calm or comfort our baby. Even just touching her makes her more agitated, so we have just been trying to let her rest.

As far as her closure surgery yesterday, everything looks good. Dr. K changed her dressing on her abdomen today and said that it looks nice and pink, no redness and it doesn't appear to be getting too swollen and tight, so that is good news. Also her chest/abdominal x-ray looks good. The hematoma appears to be almost gone, the right lung is well inflated and the left lung is still incredibly small but also inflated.

A lot of people have been asking us for our address at the Ronald McDonald house so I thought that I would just post it so whoever wanted it could copy it down.

Ronald Mc. Donald House

2501 Cherry St.

Kansas City, MO 64108

Attn: Brian and Cassi Reed Room 207

So it is a pretty quiet day down here in Elli's room, least wise we are trying to keep it that way. Still much of the same, staring at monitors, visiting with doctors, and holding our breath for the next steps, knowing Elli will take her time and progress at her own pace. If Elli is up for it I will try to get some more pictures to post, but as for now we are all trying to keep a low profile and keep Elli as comfy as possible. I guess we now need some Pain Management prayers. We continue to be in awe of the amazing outpouring of support. Thanks to all. Brian, Cassi and Elli

Goodbye Mr. Silo

This picture was taken on Monday, thought it was a cute one. So Bright Eyed!

Right after surgery, so sleepy.

SugarBear and Elli showing off their stomachs.

Just a couple hours after surgery, so tired but need to sneak a peek of mom and dad. (I think I have seen Brian do the "one eye" look before too!)

Elli came through her surgery doing very well. They were able to fit all of her intestines, stomach, and spleen back into her abdomen by the aid of an Alloderm patch. The patch is between the skin and the muscle attached to the fascia. The surgeon said that her tissues will grow into the Alloderm patch and there will be no need to have it removed. They were able to close the skin over top of the patch so it just looks like a long incision below her left rib cage. Basically the only complications of the Alloderm patch is a possible hernia in that area when Elli gets older since the abdominal wall has been compromised.

Dr. K was by Elli's side during the surgery and didn't even have to change any of the vent settings. He said that Elli did great during the surgery and she had very minimal blood loss. The surgeons decided to remove Elli's abdominal drain but left in the chest tube. So far her gases have looked pretty good and they still haven't had to adjust any vent settings...GO Elli!

Elli is still pretty sedated, considering that the doctors gave her enough paralytic drugs to knock down a horse. She did open her eyes just a little bit tonight when the nurse and I were repositioning her. She is finally able to tolerate lying on her side without her saturations plummeting. She looked pretty comfy not lying on her back. Hopefully the nurses will be able to change her positions more often so some of the edema in her head will start to work it's way out. She has a pretty bad flat spot on the back of her head from lying on her back since her surgery on Sunday. Other than that we are pretty much just hanging out, hopefully the next couple days will be pretty slow, letting Elli rest and recover, and then we can work on weaning down the vent settings. The nurses did start some Nystatin powder for Elli's "double chin" since it was getting a little most from her neck and upper chest being swollen.

Well it's almost midnight, hopefully her blood gas will look good, so far she has been pretty quiet but woke up for just a bit, but seemed pretty agitated so now she is getting some happy meds to help her rest.

Thank you to everyone that has been following the blog not only today but Elli's ongoing journey. It seems like yesterday and yet a life time ago that I had Elli. Brian and I are just so in awe of how strong Elli is, this tiny baby enduring her 4th surgery in 2 weeks. She is such a blessing to Brian and I and has been an inspiration to both of us. She continues to amaze us daily with her strong will and fight. Thanks again for all the support...Brian, Cassi and Elli

OUt of Surgery

Just got a call from Dr. K and she is out of surgery, came out with the Aloderm patch and seems to be doing well just have to wait until she starts coming off the medication. We will be able to see her in about 45 min.

Surgery Update

Well Elli is in surgery...finally. We got pushed back because there was an emergency appendectomy. So as of about 3:30 Elli should be nicely sedated and the surgery starting. The surgeon said that he is going to put in an Alloderm patch (made of donor skin) and hopefully there should be minimal complications. Dr. K said that he is going to be there when Elli has her surgery since she is on the HFOV and because he wants to watch her oxygenation very closely. The surgery should likely take about an hour, and then a half hour or so to get Elli stabilized and cleaned up. Praying all goes well and Elli will be one step closer in her recovery. Will post an update when we find out how it went.

Getting the Kinks worked Out

Just a quick update...Elli is doing pretty darn good. The steriods that they gave her seem to be kicking in and helping with the inflammation/oxygenation. The nurses and doctors have weaned her Delta P down to 30, so she is ventilating well. Her gases have looked pretty good throughout the night and she seems to be getting more stable as they try different things. The respiratory therapist also turned down her MAP (mean airway pressure) the amount of pressure that is delivered with each tiny burst of air to between 14-15. As of now her Nitric Oxide is still going and her oxygen is still turned up to about 100%, but her saturations have seemed much better throughout the night and this morning, we even saw them hit 98% for a split second. Since her oxygenation is so much better when she is calm and sleeping, the doctors decided to go up on her sedation. They turned to Morphine and Versed up last night, but it didn't really work. The night nurse ended up giving Elli 5 doses of PRN meds, so this morning they cranked them up again, but clearly our little Miss does not want to be sleeping. Daddy is currently sitting by her trying to get her to close her little eyes, but she is resisting. She was doing the same thing last night when we were trying to leave. Since Elli has been so much more stable through the night and this morning the doctors and surgeons think that is in Elli's best interest to get rid of the silo. The plan is to clean out any old blood or yucky drainage and put in a patch to allow room for the remaining intestines in the abdomen. Hopefully this will decrease the risk of infection and help Elli in general. So I guess the plan is to to have surgery this afternoon at 1:00 to close with a patch. Will post more when we know more.

Fine Tuning

We are getting into the bad habit of staying with Elli until the wee hours of the morning. Last night we stayed until almost 3. Elli has been pretty up and down. She is either oxygenating or ventilating but not both for some reason. Her gases have looked pretty much the same, not horrible but not great.

This morning Brian and I went to the Community Blood Center here in Kansas City so Brian could give blood. He has been wanting to do this for the last week or so since Elli has been relying so much on blood he wanted to give back ( I am not able to give for another 4 weeks, but plan to then).

The Doctors decided that Elli needed to have her Nitric Oxide turned up to 20 because she was not oxygenating well. Dr. K thinks that her pulmonary hypertension is back. This is due to the fact that during development, her lungs did not form correctly. Because she has only one "true" lung, the amount of blood flow that normally goes to both lung is forced into the right and very tiny left lung. It is basically like trying to fit 20 gallons of water into a 10 gallon tank. The other reason Dr. K thinks that Elli might not be oxygenating as well is that she is having an inflammatory response to the amount of blood that is collecting in her chest. This causes increased release of white blood cells from the bone marrow that are trying to restore harmony in her body (since there was intestines in the space, the body wants to fill it with something, and it happens to be blood). They are hoping by tweaking the vent settings, keeping Elli calm (aka sedated) and by starting steroids that they will be able to reduce some of the hypertension and allow her lungs to relax a little more thus enabling her to have better oxygen exchange.

We are really hoping that they figure out what Elli likes because this afternoon her oxygen saturation ( the percent of red blood cells carrying oxygen) was down to 82% and hung out there for almost an hour (no.. we were not breathing during this time) Finally they adjusted the vent a little and her saturations have slowly came back up as high as 92% but they are hanging out around 89-90%, but Dr. K seems to be thinking that it is acceptable according to her blood gases. As far as her ventilation goes, her CO2 levels have been looking good, as well as her blood pH, blood pressure and urine output (all good signs).

Shoot.. one of resident pediatricians just came in and told us a little bit of news we didn't want to hear. The surgeons and Dr. K had been discussing the possibility of having surgery tomorrow to reduce Elli's slio and either close the abdominal muscle or put in a patch that goes on the skin to give a little more room for abdominal expansion. Honestly Brian and I don't think that Elli is ready for another surgery so soon considering that she really hasn't stabilized from coming off ECMO, we thought that Dr. K was on the same page, but I guess now they are going to do an "exploratory" surgery tomorrow around 1 ( don't hold your breath, I would be surprised if it even gets done tomorrow before 5). Either way the surgery team wants to go in and evaluate the silo, possibly irrigate some of the blood out of the abdomen and decide what the next step should be. We are hoping that if anything they use a patch to allow for more room in the abdomen and after Elli grows a little more, gets more stable, and her lungs have time to adjust to the workload, that they can go back in and do the final closure. The resident pediatrician said that they were going to do it in the OR, but hopefully they will be able to do the "exploratory" part here in the surgical suite so they don't have to put Elli through a big move. It's just hard to believe that they think Elli is ready for yet another surgery, sedation, and possibly the risk of more bleeding. It is all so scary, we just wish that she could have more time to rest between these huge procedures on such a little baby.

As far as tests today, Elli had another chest x-ray, which Dr. K thought actually looked better than yesterday. They have determined that the clouded area on the upper lobe of her right lung is just a shadow from the left-over hematoma from the ECMO cannulas that were in her neck. Dr. K also thought that both the right and left lung were well expanded, and the left a little more than before. Also she had another ECHO of her heart, and the results were about the same as they had been on the previous. The ECHO showed a slightly smaller left ventricle (the part of the heart that pumps blood to the body) and a higher pressure in her right ventricle (the part of the heart that pumps de-oxygenated blood to the lungs where it is supposed to pick up oxygen to take to the rest of the body) Well that is where the pulmonary hypertension is coming from. So really nothing new with the heart that we didn't already know. In other news, the blood culture from Elli's arterial line in her foot didn't grow any real type of bacteria. It grew out a little something, but if she were in "normal world" they would not use antibiotics on it, it would resolve on it's own. Since Elli has had so many surgeries and has so many lines she will continue the current course of antibiotics for about another week.

Ok this post is getting longer and longer, but Dr. K just came back in to talk to us once again. The surgery is not definite for tomorrow, he will have to okay it first depending on what kind of night and morning Elli has and let us know that they will be able to do the surgery right where she is. Dr. K even said "they do open heart surgeries in this room, they should be able to do this little procedure" I don't really think he wants her moved, and neither do we. On that note, we are going to be so bummed when Dr. K leaves. He was scheduled to be the Attending neonatologist until last Friday or Saturday but decided to stay until Thursday (since he thinks Elli is such a fighter, he wants to see her get stable). Seriously I must stop typing now...If more news comes up, I will put it in another post.

Delta P?

Daddy's 1st Diaper Change...a little rocky, but went well none the less.

Kisses for Elli after the big Diaper Change.

Elli spent about 30 minutes this afternoon just looking around, she seemed pretty happy but...

...clearly she didn't like something. How can such a sour face look so darn cute?

Elli looking at her Mommy, thinking why wont this lady just pick me up already.

What the heck is Delta P? Brian and I have gotten very acquainted with Mr. Delta P. It is a HFOV setting that seems to determine what kind of gas Elli is going to have. (The Delta P is the amount of pressure behind each burst of air put into Elli's lungs) Currently Elli is receiving 600 tiny bursts of air each minute. No that is not a typing error, I said 600! Miss Elli has decided that she likes the Delta P at 40. Try and turn her down to 38 or 39 and her CO2 starts going up, and she starts really breathing over the vent, I guess she is just trying out her new diaphragm. The doctors really want to wean Elli every time she has a good blood gas but once they turn the Delta P down, she gets cranky and her CO2 is on the rise. The reason that they want to wean the vent settings, and won't just let her sit tight at a level she likes is that the HFOV tends to beat up the lungs. They want to least amount of pressure that Elli will tolerate with her numbers still staying in the acceptable range, so hence the constant trials to wean. As for right now, they are leaving the Delta P at 40 for a while, it has been there since around 6:00, so we hope that they let her adjust to it for a while. As far as everything else goes, Elli looks great on paper, her blood pressure has not had any issues since her blood volume has gotten back to where it needs to be and she is still peeing like crazy. Shoot, one of Elli's midline IV's just got pulled out, it was clotted off, so I don't know if they are going to try and start another one or what. And now I just heard that that her scalp IV that she is currently getting Vancomycin through is all red, so it's probably bad too. Darn it Elli, sounds like a few more pokes to come. The nurses have been giving Elli several PRN doses of Morphine and Versed to try to keep Elli from breathing over her vent, so I am wondering if they will end up turning up the drip rates pretty soon, but haven't heard any word of that yet.

Still back in the surgical suite all by ourselves. They had talked about moving Elli back into the ECMO room, but she is not stable enough yet, but hopefully she will begin to stabilize over the next several days. So as of now the plan is to keep Elli happy. With any luck she will be able to very, very slowly tolerate some lower Delta P numbers without her gases looking too bad.

One more thing, Brian and I put the hit counter on around this time last week and it is unbelievable, over 12,000 hits! That is amazing, we cannot believe that so many people are checking in on Elli. It is so refreshing to know that a baby that hardly anyone has got to meet can have such a great impact on others. She is truly a fighter and I hope that everyone continues to watch her progress, because we are all going to make it through this crazy journey. And everyone that has posted thoughtful comments, it has been a true help to Brian and I. These last few days have been so crazy, but it is nice to be able to sit down at the computer, pour out thoughts and know that there are so many people that truly care about all three of us. Thanks again, hopefully the next several posts will be filled with cute pictures and good news. Thanks again. Hope and Love....Brian, Cassi and Elli

Rocky Road

We knew going into this that it was going to be an emotional roller coaster, but really we had no idea. Yesterday went from super low to pretty high. And today has been highs and lows each hour. Apparently Elli knew that we left last night because soon after we did, her gases started looking worse, the changed some vent settings and gave her some PRN morphine and versed, trying to keep her calm so that she was able to let the HFOV (high frequency oscillating vent) help blow off the CO2.

I called early this morning around 5 and she was doing okay, not great, but they were tweaking her settings a little hoping that it would help. Brian and I got to the NICU late this morning considering we didn't leave until around 2:30 last night and then had to have our nightly chat when we got back to RMH, so incidentally we slept in until almost 10:00 (luckily I hadn't pumped for 4 hours, so our alarm clock was a wet T-shirt if you know what I mean). Anyways when we got here, Elli wasn't doing the greatest. Her HFOV had been turned up, and so had her O2 flow it had been at 40% when we left last night and they had it turned up to 59%. Her blood gases were looking worse and worse, and I was freaking out. Dot our nurse for yesterday and today said that it all started going a little down hill since they came in and did an ultrasound of Elli's abdomen. They were looking at the liver to see if any of the swelling had gone down and looking for any possible active bleeds. The ultrasound isn't 100% back yet, but it doesn't appear that she has any active bleeds, because her Hemoglobin and Hematacrit have been excellent and her blood pressure is also holding stable without any extra blood or boluses (thank goodness, her little head is so edemetous just to rest your hand on it for even a few minutes, your fingers leave an indention).

Anyways, back to the ultrasound, when the ultrasound tech was doing it, she was pressing on Elli's abdomen making her very mad, also soon after she left Dot noticed a very large amount of blood in Elli's chest tube and on her bed (equivalent to almost 50 mL's). At this time Elli started destating (her blood oxygen level started to drop) and was down in the low 80's, so Dot turned her O2 up to 80% which helped a little, but only brought it up to the upper 80's low 90's. This is odd because typically Elli has not had a problem with oxygenation, it is with ventilation (CO2 removal). So of course she once again had the doctors scratching their heads. They did a chest x-ray to make sure that the pressure on her stomach from the ultrasound hadn't disrupted anything and to make sure that her lung wasn't collapsing or anything. The x-ray looked pretty good, Dr. A actually said that it looked a little better than last night, but the questionable area in the Right upper lobe is still there. They are thinking probably pneumonia or a small amount of collapsed area. Either way like I said last night the HFOV helps with both and she already has antibiotics on board that would cover the pneumonia. Also last night they did a blood culture of her arterial line (measures internal blood pressure and it is where they draw all of her blood from) and it was positive, so once again the antibiotics that she is currently on should cover any type of infections that are brewing.

Either way they have tweaked her vent settings and given her a round of PRN Morphine and Versed to help keep her from trying to breath over the vent, and it seems to be helping. Her last set of blood gases were all in the normal range, so of course when they look that good they have to decrease the vent settings just a little bit to make sure that she is still having to do a little bit, and not getting lazy on us. Currently her oxygen saturations look pretty good mid 90's and she is on 63% oxygen. Dot is going to get another set of blood gases at 4 to make sure that they didn't turn things down too much and that she is tolerating everything well. Either way I feel like I am living one blood gas to the next. Hopefully everything will get settled down pretty soon, but as of right now Elli is still extremely critical. Brian and I have pretty much been sitting by her bed talking to her and holding her hand since her surgery. She is one tough cookie, I actually wish that I was as strong as her. More of the Elli drama to come soon and some new pics (daddy changed his first diaper..Yeah!!)

She Likes It

Right before shift change the nurses got a set of blood gases on Elli and her CO2 was back up to 74 so on the oscillating vent she went. Dr. P who has basically been in Elli's room all day pacing back and forth (especially those first few hours after she came off ECMO) discussed these most recent blood gases with the Neonatologist that was in house Dr. T and he decided that it would be best for Elli to go on the oscillating vent. Of course we had to leave for shift change and so when we got back they had done another set of gases that were only slightly improved, but as of 10:00 Elli's gases were PERFECT! What a little champ, she really likes the oscillating vent. Her color looks so much better and her blood pressure is finally up where it was before she came off ECMO. Also, it looks like her bleeding around the silo has pretty much stopped. There does not appear to be any new oozing from that area or around the abdominal tube (there had been a steady trickle from it earlier this afternoon). Apparently the Heparin is finally getting out of her system, and she is peeing like a champ which also helps to excrete the Heparin. So all things considered from this afternoon, Elli is pretty stable. Dr. P even turned down her vent settings at 11:00 and is going to get a blood gas at midnight to see how well she tolerates it. We are planning on staying at the hospital until that gas gets back, then we might go get some shut eye. Elli did wake up just for a few minutes this evening when she had a chest x-ray taken. Dr. P wanted to see what Elli's lungs were looking like. He showed Brian and I the x-ray and it looked pretty good. Her right lung looks well inflated with a questionable small area at the very top that looks like it might be a) collapsed b) pneumonia 3) hematoma area where the ECMO cannulas came out. He is going to keep a close eye on it over the next few days, but if it is pneumonia, Elli is on antibiotics. If it is a collapsed area the "jet" from the oscillating vent will "knock it out" so to speak. And a hematoma will resolve itself, so pretty much all bases are covered whatever the reason might be. Dr. P also seems to think that the little left lung "nubbin" looks like it is inflated. He showed us on the chest x-ray but it was pretty hard to see and you really had to squint. I guess any lung tissue on the left side is better than nothing and it wont hurt if it is helping the right lung out. I guess that's about it for tonight. Hopefully all will be well in the morning. I am sure that I am going to have to call at 2 and 5 when I pump just to make sure she is still doing okay. It's almost midnight now, waiting for the gases then off to the RMH. Thank you to everyone that has been checking the blog and leaving comments. I think that today was even more stressful then the day Elli had surgery. She is defiantly giving mommy and daddy some grey hairs, but they will be worth it when we get to take her home.

Off ECMO

As of about 2:00 this afternoon, Elli has been off ECMO. Because of the increased bleeding from around her silo, the doctors were forced to speed up the weaning process, and the surgeons were called to decannulate at 1:30. It was a few rocky hours after coming off, her blood pressure dropped very low 30's/20's. The nurses had to give 2 normal saline boluses to try to keep Elli's pressures up while they waited for blood from the blood bank. Elli has gotten 2 blood transfusions and a unit of platelets since the surgery and her blood pressure is just now leveling out. It is not as high as it was before surgery but it should improve once her blood volume is back to where it needs to be.

As far as how well she has been doing oxygenating and ventilating, the oxygenation part is going well but the ventilation (blowing off carbon dioxide) is improving. Elli's blood gases have been pretty good, and are getting better. The last CO2 level was 65 down from 89 (normal range is 35-45) so they changed around the vent settings a little bit, and now are holding them where they are. Currently Elli is still on the conventional vent with nitric oxide, but the daunting "jet" vent has been pulled into the room in case it is needed. As for now, if her CO2 levels continue to decline, she will probably get to stay on the conventional vent. Elli is still pretty knocked out because of the amount of Fentnyl (pain med) that they gave her during her surgery, apparently little Elli didn't want to fall asleep for the procedure and they had to give her a couple extra doses to get her to cooperate. The nurse did end up having to put another IV in Elli's head because the surgeons were unable to place a Hickman central line during the decannulation, so we are still left with the midline placed earlier today and now a scalp IV. Super Brian (who got the midline earlier) is now attempting to put in a PICC line. X-Ray is here to verify placement, so hopefully it is in the correct spot. I guess that's all for now, will post later if there are any changes. We are praying for a quiet night, and that Elli will continue to prove how strong she is.

We're Weaning

Got to the hospital this morning and they had already started weaning Elli off ECMO. They restarted the Nitric Oxide and have turned up her vent settings. The ECMO flow is now down to 150 and her blood gases have looks great so far. They are going to turn it down to 100-120 at 11:00 and will continue to do blood gases every hour. The plan is to have Elli completely off ECMO today and the surgeons are even going to take the cannulas out of her neck. The reason that they are sort of speeding up the process is that Elli has been bleeding a little bit more, her chest tube is still having a fair amount of drainage, and now she is oozing blood around her silo. The nurse today said that the surgeons came in this morning before we got here and repositioned her silo because it was coming out on one side. Hopefully that was causing the bleeding and it will slow down. Once Elli is off ECMO and the Heparin clears her system, her blood will be able to clot, slowing the bleeding even more.

Elli just got a midline placed, since she didn't have any IV sites besides her ECMO cannulas, it was imperative that they find some sort of access. One of the male nurses, Brian, got access on the first try. That was very refreshing. Seeing her little hand get poked should have been no big deal, but as of today, we had really only seen Elli poked with a needle the day before she went on ECMO. The doctors have also decided to restart Elli's antibiotics for prophylactic reasons. Other than that we are just waiting and praying that this is an easy transition. Will keep everyone posted on her progress.