Hi Cute Little Face!

The bigger gaps between the blog posts usually means things are going well!

Ella got her trach put back in yesterday and is a new girl! The procedure took a little less than ten minutes. The prep and the walk there and back took longer than that! She was so happy yesterday and was  moving her lips around, thankful the tube was now gone from her mouth! The nurses and doctors stopped by her room all day tomorrow to see her face again. It was so sweet. Best thing about the trach... I GOT TO HOLD HER AGAIN!!!! YESSS! It was extremely complicated with the ventilator still hooked up, but great! Three and a half weeks in the making. I was bummed that Ella had to get the trach put back in, but it is what it is and hopefully she won't need it too much longer 😁. Just think, three weeks ago she was on life support and now check her out. She is a living miracle people!

Ella has THREE teeth, yes you read that right, THREE!!!!!!!! They are so so cute and along the bottom of her mouth. I looked and it seems like her little canine teeth are coming through as well as one top, front tooth. I have never seen canine teeth come in before front teeth. We have called her our little vampire since she likes to get blood so often, but now she really will be if these teeth come in before the front ones! HA! I keep telling people that she is ahead of the game in this one area! Forget holding her own head up, she's growing teeth right and left! Four months old with multiple teeth. Crazy. She was chomping on her pacifier and my finger today so I'm just waiting for the other ones to come through.

Her head wound didn't get as bad as it was the first time around, but it's still pretty bad. I'm hoping that by me holding her and getting her off of it, it will go away quicker. I've been helping the nurses with the cleaning and bandaging so that's been nice to take part in her care. The wound care nurse came to inspect it and I reminded her of what we used to do and we both decided we liked that way of doing it better than the new way, so she asked if I could do it since she had another patient to see right after Ella. She told Ella's nurse something like, "Mom knows how to do it all, just ask her." 😊 I loved it.

Her blood pressure and perfusion still seem to be an issue. We can't quite get her off a medication that helps regulate it. Hopefully we will be able to soon.

They have weaned her off the pain medication quite a bit. It's pretty awful watching her go through withdrawals from it. It makes me sad for her. She doesn't seem super irritated by it, just really twitchy and her eyes go cross-eyed. This will hopefully pass soon!

Ella is still on the vent but has been doing a great job with all of her 1 hour sprints off of it. I am hopeful that she will get off fully relatively soon!

We are still in "isolation precautions". So I get to wear the lovely yellow outfit and gloves all day. The infection was caused because of another family on the floor that didn't follow the isolation precaution rules. So that is pretty frustrating, but I am sure to follow the rules to help prevent it from spreading to other families. It reminds me of when people take their sick kid to school or out in public and don't think that it could infect another child. Grr... No idea when these precautions will be lifted, I have been told "indefinitely". The other infection that Ella has in her chest has not needed the wound vac (yet)!!! YAY! I am so so thankful that God has been protecting her!

Ella's bleeding in her tummy has subsided for now so that's good! She is eating and will hopefully get to her goal food intake soon so she can start getting the proper nutrition to heal even better!

My principal and superintendent visited today and it was great to see them. It is really amazing that Matt and I both work for people that care so deeply for us and our family. We are truly blessed.

I have been keeping myself busy with puzzles, TV shows on Amazon Prime or Netflix, and books now a days. I am pretty much confined to her room other than when I get food from the cafeteria and when I leave for the Ronal McDonald House at night. I sit at Ella's bedside a lot and hold her hand or stroke her hair. I definitely miss Matt's company. I always love the weekends because it's when Matt, Eli, Ella, and I get to be together. I can't remember if I have shared this already, and I'm too lazy to go back and look in the blog, but I keep thinking about how sweet Eli is with Ella. Even when her chest was open and a tube was in her mouth, he looked at her after I asked if she looked different to him and he said, "No, she's still cute." During our 18 days at home he was always looking out for her checking to see if she needed a "shuction". Gosh, he is such an amazing boy. I hope he is always that kind and sweet.

Please continue to pray for our family as it is hard to be apart for so much time. Please pray for her blood pressure to even out and for her withdrawals to subside. Please pray for healing in her wounds and miraculous healing of her aortic valve, as that didn't get repaired as well as they were hoping for. Praise God for the example He has given us of His power and His sovereignty through all of this. Praise God for the people He has placed in our lives as a result of Ella's condition. {Praise God for such an amazing support that we have in our family, friends, church, and the prayers we've received. Praise God for He is good.

Love you all,
Jillian

P.S. Little Lupita was also extubated (no more tube in her mouth)! So she's doing better too! Today was her mommy's birthday.

P.P.S. If you are commenting on the blog below or on Facebook/Instagram I am totally reading them and love seeing them even when I don't respond! You all are amazing!

Freaking Us Out

Yesterday I went home and hung out with Matt and Eli. After lunch and a nap for Eli, we went to the river for a fun day. It was great. The river was beautiful and Eli loved throwing rocks in the water. I couldn't help kick a nagging feeling that we were going to get a call from the hospital because we were in an area that had no service... I was right. Thankfully, the visitor's center at the river had free Wi-Fi so I was able to connect to the internet to check my voicemail. There was a message saying that they've been trying to get a hold of Matt and I for a while and needed us to call them back as soon as possible. I remembered that AT&T has the capability to call over Wi-Fi so I was able to call them immediately! Such a cool feature!

I was told that our nurse, Christal, found blood in Ella's stomach. She told me later that she noticed that Ella's belly was looking really full, so she checked for any residual food and blood came up. So she immediately called for the PICU doctor and she found approximately 100mLs of blood in Ella's stomach. Her normal blood hematology level is somewhere between 13-17 and she dropped to a 6. What was amazing was that her looks didn't change at all. She was just fussier than normal so Christal investigated. Thank goodness she did! They had to call the pediatric gastroenteralogist to come quickly and do a scope to check out what was going on. They found that she has a few ulcers in her stomach and a bruise of some sort in her esophagus. These are probably due to the medications that she needs to help keep her blood thin for her shunts in her heart. I guess it isn't super uncommon for these critically ill babies to have something like this happen.

Matt and I quickly got home and packed up things for Eli to spend the night with his grandparents and dropped him off. He was really sad to see us go, but we knew we needed to be there for Ella. It's so hard having our kids separated... I feel like my heart is torn in so many places. It's hard not seeing Ella, but I miss Eli... I can't wait for the separation to be over, but I know God has us in this place to grow and stretch us in ways we don't always see right away.

We booked it down the hill to see Ella and when we got into her room, she looked good and peaceful. I was finally able to relax a little since I got the call. She was looking at us and around the room and then drifted off to sleep.

Ella's been doing well today. Her blood gas numbers have all looked really good which is a good sign that there is nothing extreme going on in her stomach and that the blood, platelets, and removing some of her meds have all helped. They have even decided to take the blood gas draws down from every two hours to every six! That's a good sign that things are getting better and stabilizing! After her surgery, they were taking blood gas draws every 15 minutes, so this is much better than then!

I always joke about how Ella starts to freak us out and pulls different stunts when she wants attention. Apparently she felt like she needed me back at the hospital and knew she'd get me down here by doing something like that 😉.

They requested that nothing be put down Ella's mouth (like the NAVA NG tube) so that her esophagus has time to heal. So we are back on the old ventilator that doesn't have that feature. They will do sprints in CPAP mode pretty soon to help wean her off the vent.

So far today has been relatively calm and she is able to rest a lot more, thankfully!

Love,
Jillian

All the Beads

Hola!

I am nervous to say it, because in the hospital everyone is a little superstitious, but Ella has been making EXCELLENT progress. The difference from Sunday to today is insane! The magic of blood is phenomenal! She looks a lot more like her normal self and is looking around and checking out her surroundings. She didn't even really sleep the last couple of days because she was too busy checking out whatever was going on around her. Today she has been sleeping ALL day to catch back up.

Ella's heart function continues to be good! The latest surgery was to repair the leak in her aortic valve, but there is still a leak 😞... It's smaller than it was, but it's still there. There's not really anything we can do about it at this point and she seems to be doing ok with it. She will eventually need surgery on it, but we are hoping that we can hold off until she needs surgery for another reason.

Her wound on the side of her head is starting to go away! The one on the back of her head is actually a little deeper than it was the last time I saw it, but wound care nurses will be coming twice a week to check it all out. Her sternum has been healing even with the infection underneath it. There was talk about having to use a wound vac to get the infection out, but the last few days her white blood cell counts have gone down so they think the antibiotics are working! We are praying, praying, praying that she will not need the wound vac because it would keep us here FOREVER. Haha! But really... We'd be here for months. It feels as if we've been here forever as is, but to add more forever would be c-r-a-z-y!!!

Unfortunately Ella is going to get the trach put back in on Wednesday... As much as Matt and I have asked if we can try to extubate without the trach, Dr. Watanabe doesn't want to risk upsetting her and have her "code" again. She is still in a critical state so he doesn't want anything to interrupt her healing. It's kind of hard to argue with that! I am hoping that we will be able to start to wean her off of the trach before we leave here. The argument is that they want a stable airway to use for her next surgery, whenever that may be, but they didn't use that one for this surgery so I don't really see the point. It's so much work at home that I just don't want to have to put her through all the junk that comes with it anymore... I have a picture of our family in Ella's room and I started busting up laughing after I looked closer at it because Ella had ripped her HME (the trach cover) off and was holding it with a pleased facial expression. She has already shown us that she is going to be a sassy child. I guess I kind of deserve it after being one myself!!

We have been in "isolation precautions" because a bacteria somehow reached Ella and three other kids on the floor. I had to meet with the PICU doctor a couple of days ago to go over how Ella got it and what they're doing about it. The doctors/infection control thinks that it started in the playroom and was brought in by a sibling of another little one in the PICU. So since we went in the playroom with Eli, Ella caught it. It doesn't impact normal, or even moderately, healthy people, it just impacts the critically ill. So on top of her other infections, she contracted this bug... Honestly, I'm a bit surprised this hasn't happened earlier with all of the illnesses that comes into the hospital. I guess this is the first time (of course 😉) this has happened in this hospital since they moved to this facility and it hasn't happened in the last 15+ years. So we have gotten to experience a lot of those things that rarely happen around here! We had to switch rooms today into a sterile room next door. It's all backwards from the previous room we were in so I'm all kinds of thrown off! Ha! Because of the isolation precautions, I am not supposed to leave her room other than when I need to grab food. They don't want this bacteria to spread to any other kid or to anyone in the rest of the hospital. So that being said, we aren't going to bring Eli in to see her until the precautions are lifted. I also have to wear gloves and a gown at all times. It's pretty awesome. 😉

Yesterday I got to sit in on one of Ella's "procedures". I haven't sat in on one before now because I wasn't really allowed to, but they said that since they know me so well now that I could! I really enjoyed it. She had an arterial line placed in her left arm. It stretches from the inside of her elbow up to her shoulder. This allows the nurses to administer meds and get blood draws through it. Dr. Hill had an ultrasound machine and was watching where he was placing the line through it. It was really cool to experience what they do! I am definitely glad I was just a bystander and didn't have to do anything, but it was really neat to see. Ella was so cute during the whole thing too. She was given painkillers and a paralyzing medication which made her sleepy for a little bit, but when they took the sheet off the top of her, her eyes were open and she just watched Dr. Hill as he sutured the top of the line to her arm. It was so cute (weird to say something's cute when it comes to stitches!). She also had her chest tube taken out so that was great to see too! One step closer to holding my baby again!

All dressed and ready for the procedure!

They are continuing to wean Ella off the vent and are using this newer program called the NAVA still. I explained it in the previous blog. She seems to really like this program. She looks really rested and comfortable since using it.

Ella is also up to goal volume of milk and is now starting to get the milk fortified to a higher caloric value. She's done well with the milk so far. We continue to pray for no chylothorax!!!

I have definitely felt very hopeful that we will get to take Ella home again. We haven't even brought up the "discharge" word, so I have no idea when that'll be, but I think we will get there! If you would've asked me on Sunday, I would've said there's no way that she will go home again, but if she keeps fighting like she has been, I think she will get to! We now call our house her vacation home. 😊

We started this new program called Beads of Courage. It's this program where a foundation gives hospitals beads to give to chronically ill kids to have a hands on way of showing all that they've been through. Ella has collected 1225 beads as of Monday! Isn't that crazy?? It symbolizes the pokes, procedures, wound care, surgeries, nights stayed in the hospital, blood infusions, etc. that Ella has been through. It has been really cool to see all that she's gone through in a tangible way. Some of them are for particular courageous things that Ella has done and some have even been carried by people while they've done courageous things. Ella has one that was carried in the Boston marathon and one that was carried by a musher in the Alaskan Iditarod. My cousin photographs the Iditarod so I sent her a picture of the bead and the card explaining that Becca Moore carried it. She tagged Becca in a comment and Becca responded! Talk about a small world. I have another bead carried by a young student who was brave and carried her bead while she took a big test. Isn't that cute? I want to get my class to do something with the Beads of Courage. There are so many awesome foundations out there! The beads make the procedures a little less hard on us. They remind us of all that she's endured and the strength she possesses. She's incredible.

Ella's beads. Cool huh???

Just want to say it again, everyone here at Sutter has been so amazing. They really are our PICU family 💜

Please pray specifically for the infections in her body to be healed. I really don't want to have to use a wound vac.

I am going home tomorrow to spend a fun day with Matt and Eli tomorrow!!! We aren't sure what we are going to do yet, but we have some fun ideas!

Love,
Jillian

Throwing Wrenches

Hi everyone,

Thank you for all of the love and support you have shown to our family. I cannot express how thankful I am for all of the prayers. It is amazing how we really do feel the prayers wash over us. I love how God allows us to come to Him directly and how He comforts us in times of need.

Ella is more restful today and seems to be more comfortable. The rounds today (there were multiple, but usually there's only one in the morning 😊) with the doctors, nurses, and surgery staff went pretty well. During the daily rounds the doctors, nurses, pharmacists, and surgeon team members talk about what they need to change, add, or remove with medications, ventilator settings, nutrition, fluid balance, and much more. They also talk about goals they have for the day. The nurses communicate things that happen from the previous shift (day or night). This is a time where we (family members) are able to ask questions and learn more about her care. I really like being there for the morning rounds. I find I know a lot more when I go to them and I am able to even help sometimes because I'm the most consistent person around Ella. I have gotten a lot more confident in asking questions and suggesting things too which has been really cool!

Ella likes to throw wrenches in our plans so we often say we are going to do something, but she then makes us change those plans. She is still on a lot of medications that are helping with her nutrition, fluid balance, blood pressure, pain management, etc. Today during rounds I was told that the PICU doctor wants to be more aggressive in weaning Ella off the ventilator. This could mean that she would be getting the trach put back in or she may get extubated without it, depending on how she does. Dr. Watanabe came in after his surgery today and he and the PICU doctor aren't totally seeing eye to eye on the extuabation timing. They both have good ideas so please pray for clarity and wisdom for Ella's care team. I love how passionate they are about their jobs. It just shows me how much they love my little girl. It is so incredible how hard these people fight for her best interest. I know I've said this a lot, but I really can't believe all that the staff does and sees here in the PICU. They are truly special people.

Last night Ella threw everyone for a loop and during one of her breathing treatments, called IPV, her "stoma", or trach hole (as I like to call it), opened up and air and junk started shooting out. An IPV treatment is when a respiratory therapist holds a little machine that shoots air into the lungs that causes a wiggle that breaks up secretions. Ella often hates it but sometimes sleeps through it. I can laugh about this because it just makes sense that Ella would pull that kind of stunt. HA! I owe these nurses and therapists more cookies and candy. 😂

They have been upping Ella's milk consumption to 4 mLs an hour. If you look at that amount in a measuring device, it is so stinkin little, but I am just excited she's been tolerating it so far. I was told before her surgeries that there is a really high probability of Ella getting the chlothorax again and may need to go on the low-fat formula again...bleh. 😞 I am praying that Ella throws us a good wrench this time!

Ella got hooked up to this new attachment to the ventilator today. It measures the breaths that Ella takes on her own a little more accurately and can deliver better breaths. This is what the company says about it... "With NAVA, the electrical activity of the diaphragm (Edi) is captured, fed to the ventilator and used to assist the patient's breathing. As the ventilator and the diaphragm work with the same signal, mechanical coupling between the diaphragm and the ventilator is practically instantaneous." It seems pretty awesome! I hope it helps her wean off a little easier. It seems to help her be more comfortable.

Ella still looks really sick today. Ashley came in this afternoon and was kind of shocked at how poor she looked. She instantly ordered blood to be given (which I actually brought up yesterday! I was so proud of myself that I knew she may need it soon!) and Ella has been receiving it this evening. She already looks a lot better, but that could also be due to the cute bow we put on her 😉. I'm seriously amazed at the impact blood has on her little body. It's tricky with a heart baby to figure out the fluid balance when giving it, but it has shown to be so beneficial to her. I want to put in a plug for The Norah Foundation's blood drive. I think it may be over already, but you can always go to any BloodSource blood bank (anywhere!) and donate under Norah's group number 0990. I am pretty much done with pumping now so I can finally go and donate!

Since we've known about Ella's condition, we have prayed that we would see our suffering as a gift. I don't know if I've talked about this in the blog before, but doesn't that sound like such an oxymoron?? But we have prayed for that continually because the fruit from the suffering can be blessings. I was reading a devotional about suffering and I found this to really bless me: "Because the Lord is with you, and because the Lord loves you, everything that happens to you is filled with divine purpose. Every trial you endure has passed through God’s loving hands. And one day, when your faith becomes sight, you will thank him for every difficulty." I hope that one day we will see why God has Ella on this difficult path, but for now we just trust him.

Love,
Jillian

A Lot.

Hi everyone,

Where to start... I went home for the fair on Friday and it was so weird being there. Matt and I agreed that it felt like our family wasn't complete and like we were missing something, rather someone. It was fun to walk around and be with Eli but we couldn't shake the feeling of missing Ella. I have been home one other time since we were admitted back into the hospital three weeks ago and it has felt weird being there without Ella too. I just want her to be back home with us. We now call our house her vacation home since she's only been there 18 days and has been at the hospital 111 days.

In the past twenty days, Ella has undergone 2 heart cath procedures, 2 open heart surgeries, 8-10 blood transfusions, countless blood draws, hundreds of hours of sedation and paralysis, and 10 days without food. As I type this, tears stream from my eyes thinking about all that she has endured. If I could take this all away from her I would. I am finding it hard to stay positive now... There is so little progress (if any) that I am very discouraged. I can also feel like the staff members aren't so sure Ella is going to pull of this one... Matt reminded me that it felt like that last week before her surgery on Monday too, but she made it through that.

Ella's chest tubes were taken out (which means we are closer to holding her but...) then the doctors decided that she needed another one put in on Thursday to allow more fluid around her lungs to subside.

Speaking of lungs... Ella didn't have to get bronched the other day! YAY! But she has been very dependent on the ventilator again... I have been nervous about this from the beginning and I was right to be. The original plan was to use the trach during her surgery as the airway connected to the ventilator, but because of the proximity to the incision on her chest and risk of infection, the surgeons preferred that she was intubated through her mouth. I'm not sure if I said that in an earlier post, but this was extremely frustrating to me because the whole point of not weaning her off the trach earlier was because they were going to use it in the future surgery. But here we are, intubated again and now looking at placing the trach in again. Last week our goal was to extubate and see how she does without the trach, but since she has shown such a dependence on the vent, that plan (and dream of mine) was squashed. I was so disappointed when I was told this morning that they weren't even going to try, but at this point, I know she wouldn't be able to do it anyway. I don't think people really realize how much time and mental awareness we have to have with the trach. We are constantly on and a lot of the care that comes with the trach is really awful and she hates it as much as we do. So that's why we were hoping that she wouldn't need it, but if it will start her healing process, I want it back in, then we can talk about taking it out when she's more stable.

Ella looked sicker today than I have seen her in a long time. It was so painful to see. Her eyes have become sunken in and her skin more of a bluish tint. She rarely opens her eyes and if she starts to move too much, the nurses have to sedate her so she doesn't put too much stress on her healing heart. The lack of nutrition seems to be hitting hard. It has been killing me watching her fight for her life since this last surgery. I just want to see some progress, but know it takes time.

The bacteria culture that the surgeons took from in her chest came back positive for an infection (which we knew could happen since she was left open for so long) and she has been on antibiotics for almost a week now. I was told this morning that they may need to reopen her chest and use a sort of sponge to absorb the infection, then use a wound vacuum to close her. I guess it takes a long time to close with one of those... I haven't really asked because I'm in denial of having to open her up again. This just, once again, postpones me holding my daughter. If I'm honest, after seeing her condition this weekend, I am worried I will never get the chance to do so again. 😢

I am really trying not to lose hope, but today has been a rough one. It's hard for me not to wish that God would just take her when she is suffering like she is right now, but I can't imagine life without her. I just want to make something better for her and I can't. Matt and I have even been told to leave her so that she doesn't get too upset. Just the sounds of our voices got her upset last night. It's hard enough not being able to hold our Ella girl, and now not being able to talk or touch her because of the risk it puts on her heart has been so hard. We have been able to touch her a bit today, but the worry of making her agitated is constantly there so I am scared to touch or talk to her much. I just want to hold her and make it all go away, but I know God is using this painful time for our family for some sort of good.

I have been told by many of you that you are thankful for my honesty in the blog posts, so here's my heart tonight. This has been so hard. I just want to see the light in Ella's eyes again and to see some progress. I'm sure tomorrow will be better! Remember, Ella is our every other day kind of girl!

Love,
Jillian

P.S. one good thing is that Ella's heart has been pacing itself for 3 days now! Pacing wires are out! 😊

Ella Speed

It's been a while since I've last posted and lots has gone on since!

Ella has been defying the odds! Her heart function is still good but is needing the pacemaker. We are praying that her heart will soon kick it into gear and get it's own pacing down. She's been back and forth... complete heart block, down to 2nd degree, down to 1st degree, and today is unfortunately back up to complete...

Her IV trees are starting to dwindle a bit and she's been getting a little more nutrition through the IV and started breast milk again yesterday. We are praying for no chylo! She has not eaten since last Monday at 2am so the mama bear in me wants to pump that girl back up.

Because of the ECMO, not being able to move very much, and lack of nutrition, Ella has some big wounds and the old one reopened...

This morning the xray showed that Ella's left lung has partially collapsed. They are getting another xray done in a few minutes to double check it, then will need to bronch her, which is essentially putting a scope down her throat checking out the lung then sucking out gunk if needed. I hope that the xray is just wrong, but I have a feeling it's not.

Ella's fluid output was minimal early on so she was pretty puffy, but now they seem to have it under control and she looks a little more like her cute little self!

So once again, we are going at Ella speed, slow and steady...

I will update more when I know more!

Love,
Jillian

Pretty Good

Hi everyone,

Ella has been doing really well since the surgery. By really well, I mean Ella-really-well haha! She has been pretty stable and was able to get her chest closed today. They have lowered her sedation meds so she's opening her eyes and wiggling her fingers and toes. The doctors are happy overall with her progress.

Ella is still on the pace maker and it's been a bit tough getting a real read on her heart rate. People were trying to figure out if it's the monitor stickers on her chest that aren't picking it up, her puffiness making it hard to pick up, or if there's scar tissue where the pacemaker is connected to her heart. We are praying that she won't need it much longer.

The doctors are hoping to get some of Ella's excess fluid off today and tomorrow. She's puffy, but we've definitely seen her puffier. We need her kidneys to start working again, they took a shot before she got on ECMO so they're working overtime.

Speaking of ECMO...Due to the ECMO machine and how they couldn't move Ella while she was on it, Ella's head wound reopened, thankfully it's pretty shallow. She also developed a wound on the side of her head that hasn't reopened. The one on the back of her head is about the size of a nickel and the one on the side of her head is about the size of a tennis ball-ish (it's not round, so it's hard to compare it to something...). The wound care nurses have checked them out and aren't super concerned, but are bummed they happened... They will be coming twice a week to check in on them.

Today was a little hard even though Ella did well... This evening I broke down because it's been about two weeks since I have been home. Matt left tonight which is always hard. I miss Eli. All I want to do is be able to hold my baby and take care of her, but I can't. And I can't for at least a week... It's beginning to feel like this is never going to end. The tears have been flowing a lot this evening. 😢

Last night, Matt and I were out in the waiting room on Ella's floor because Child Life was bringing in a bunch of newly graduated therapy dogs. It was so cute to watch them. They were some of the most well-behaved dogs I've ever seen. After a couple of minutes, we heard the lady's voice on the intercom. Now, it's not abnormal for us to hear them with alerts, but this time she said, "Code blue. Pediatric Intensive Care Unit. Third floor. Code blue. Pediatric Intensive Care Unit. Third floor." Our hearts dropped and we ran into the PICU scared Ella was "coding" again. It wasn't her. It was the other little girl that was on ECMO down the hall from her. Little Lupita. She was able to get of ECMO that morning. I just started crying because it was scary for us, thinking it was Ella, and I felt horrible for Lupita's parents, who were standing outside of her door crying. These things are things that I would hope no family has to go through and it reminded me of how fragile these single-ventricle babies are. It's scary. Thankfully they were able to rescue Lupita and things seemed much more calm today.

Overall, things are looking good, but I can't help but be nervous that I'm going to get a call tonight saying that Ella's status has changed. Praying for a good night and rest for my Ella girl.

Love,
Jillian

Surgery Updates

Here are the surgery updates...

7:45 They took Ella to the operating room

9:30 They were getting her all ready for surgery

10:30 Ella is on bypass

11:07 they finished the operating part. Hoping to take off bypass soon. Pick up from the operating room may be soon!

11:14 got a text from Ashley saying things are going well in the OR!

12:45 she's back in her room!

12:56 everything went ideally! They are very happy with it all! Yippee! Praise God!

Surgery Tomorrow

Hi everyone,

Ella had a good night and day today. Ella's leak in her aortic valve has not gotten better so we are going in for surgery tomorrow. The surgery will be at 7:30 a.m. and will probably last into the afternoon. Like I've said before, this surgery is pretty risky because of her instability, but we also know, through Christ, Ella loves to fight and defy all odds! Matt and I have talked about how maybe God wants Ella to get to the "last option" (in all of our human eyes) to prove His strength and that he is ultimately in control. But we also know that it is really risky and we have done all that we know to do and that it may not be God's will for Ella to make it through this (as hard as it is to say that).

She is still off ECMO! So that is good! Please pray for the surgery to go well and that this is just what her little heart needed or that God will relieve her of her suffering.

I was able to talk with Ashley a lot today about tomorrow's surgery. The quick version of it all is... They are hoping to repair the aortic valve (where the leak is) but will replace it with a bioplastic valve or a mechanical valve if needed. We want her heart's arrhythmia to be good as it can be and the heart function to be good as well. We also want her to be able to get off the bypass. Last night I was feeling like this may be our last few days with her, but today I was filled with more hope. When I was talking to Dr. Nasirof, he reminded me that Ella has proven all textbooks wrong. I am filled with hope that she will again, but if not, I have a peace about it as well... or at least as much peace as you can have knowing your child may pass away...

Eli went home tonight so we can focus on Ella and wait during her surgery. But today I asked him if Ella looked different to him (which she totally does)  and he responded with "No mommy. She's still cute." I love it. Here is my 3 year old boy looking at his sister covered in tubes, tape and her chest open, and he says she's still cute. It was so precious to me. It was one of those things I hope to never forget.

It is hard to explain all of the things that the nurses and doctors do for Ella all day long. No one can really understand ot unless they've been here to experience it in person. They are on constantly watching for signs of any changes, checking and administering meds, charting, while also rubbing Ella's sweet fluffy head, talking with her, or making "4 months old today!" signs to put up to celebrate her "birthday". These are incredible humans. I am so thankful for all that they do for our family.

I will update you all tomorrow.

Love,
Jillian

No More ECMO!

We are off ECMO! 

Ella has been off ECMO since 11 this morning. Dr. Nasirof (surgeon) and the team came in and talked to Matt and I about how they were able to get her off and what the next steps would be. He told us that if she doesn't do well off ECMO he would tell his patients' families that they can't do anything more, the mortality rate of going on ECMO twice is really high. He even said that he has never suggested to a family to go back on ECMO in his 9 years at Sutter. Then he said, BUT when it comes to Ella, she's beaten so many odds that he would actually suggest to put her back on ECMO and go in for surgery on Monday to repair the leak in her aortic valve. She does like to defy odds. I think God is showing a lot of people His power through her.

There has been a significant leak in her aortic valve that they were hoping would go away with the Sano shunt being opened more (which is what Dr. Hill did last night in the heart cath). Dr. Hill told us this morning that it looks like the leak is still moderate to severe even after the cath... we are hoping to postpone this surgery for a while until she gets more stable, but will do whatever her little body needs.

I love that Dr. Nasirof believes in her strength so much. We know she's a fighter, but I don't think we all really realize how much so until a surgeon who does this all of the time says that she is unusually strong. He sat in her room all day long watching all of her numbers asking the nurses to adjust things every so often. He is now going to be spending the night in a pullout bed of a chair that is right outside of her room. How amazing is that? Here's a pic of him sitting outside of her room. Isn't that incredible??

Dr. Nasirof and I had a great conversation about babies with single vents that go on to do great things. He is so dedicated and loves his job, you can really tell. He still calls her "our baby", which I love.

We have made friends with the other family who's baby is on ECMO and have been able to use Google translate more to get to know them better. Eli enjoys playing with their son and daughter and our families pretty much took over the "quiet room" on the floor. They even brought in a TV with a built in DVD player so the kiddos watched movies together.

Eli got to go into the music room today where he gets to hang with other patients or their family members and play all kinds of instruments. They asked him what song he'd like to play and, of course, he requested Life is a Highway from Cars. He sings this song so often that he sounds like a broken record. Ha! It was so cute watching him sing along. I was able to leave him with one of the Child Life workers so I could go with Matt and see Ella for the first time after she was off ECMO.

Eli and I took a long nap together today. We needed it! Matt hung with Ella while we were at the Ronald McDonald House. After we got back to the hospital, Matt told me that one of the music therapists told us that our song was almost ready and he wanted to have us listen to it. This song is a recording of Ella's heartbeat with a song recorded over it. The therapist asked me a couple months ago if we had a special song that we'd like them sing over Ella's heartbeat and I requested "He Will Hold Me Fast". This was the song that we listened to on repeat after the first time that we almost lost her. Matt had already heard the song while we were napping and said I would bawl my eyes out. He was right. It was so special. Then they surprised us with Eli's voice being recorded saying, "I love you baby Ella" at the end. Talk about emotional!!! The things that this hospital does to support its families is incredible. I hope one day to help raise money to help it all continue for other families.

Ella's nurses have been working their tails off. I hope they know how much we appreciate and love each of them. What they see on a daily basis is insane. They are such gifts to us.

So far so good. I will update you all again tomorrow.

Love,
Jillian

Heck of a Day... More Like a Week...

The procedure that they said probably wouldn't work... didn't, so we were presented with another option... A heart cath. This will be done tonight to try to open the old shunt (Sano) and insert a stent into it to allow more blood flow to the lungs. They clamped the new shunt and her blood pressure did much better but the sats tanked, hence the need for the cath. The surgery that they presented earlier (fixing the leak in the aortic valve) is REALLY risky, so they are trying to come up with other ideas to get her where she needs to be. So we are hoping to get her into the cath lab soon but it's a little difficult when it's after hours and getting a room for her is a bit tricky since it's last minute. 

Please pray for our doctors. They are having a heck of a day... more like week. They have to endure so much stress. 

We don't feel like God is telling us to go the comfort care route (hospice-type) yet. We feel like we can't NOT try. Ella has come so far and we want to fight for her as best as we can. She has been fighting, so we are too. We are waiting for God to tell us otherwise. 

I have been able to be with Ella a lot more this evening which is nice. Even though I'm standing next to her watching her heart beat in her chest (it's still open), I've found comfort in just being with her. Sometimes she gets a little stressed when I am around, but overall she's ok with me being there. Her stress levels have come down since they closed up the shunt so that's a great sign.

We will be able to see if the Sano opening is all she needs to do better, but eventually, meaning one, two, maybe three months down the road, she will most likely still need that leakage repaired. Ugh... But if she is able to recover with just the cath, then she will be more stable and the mortality rate will go down. Right now it's really risky with a 50/50 chance of making it in her condition. So we shall see. We have been praying for God's wisdom in all of the decisions we have to make and have felt like God has been guiding us through the doctors and nurses. 

Here are a few pictures that caption a small, teeny, tiny bit of the chaos that's going on around here... 

My friend, Callie, got me this bracelet for my birthday. It's been a great reminder to hold onto hope. Look at that little smooshy post-op face 😍 It's been kind of helpful that she doesn't totally look like herself. Makes it all a little easier.

Our nurses requested that Ella has a bow and cute socks on so the Child Life program brought some in!
She cannot wear her cute headbands because of the pressure that puts on her head.
So glad I can hold her hand.

Thursday morning... Trying to wean Ella off ECMO. Lots of amazing people right there!

ECMO team gave Ella a little lamb 💜😊.

Saw this at Target yesterday (Wednesday) and it reminded me of Ella.

The view from most of yesterday outside of Ella's room.

The view inside of Ella's room.

That tall thing next to the nurses is the ECMO machine.

Thank you for continuing to lift us up in prayer. 

Eli is coming down to Sac right now and we could not be more excited. We have missed him so much. It'll be nice to get to hold one of my babies. 

Love,

Jillian

The Unknown

We entered the PICU in pretty good spirits today. Everything looked like it was going pretty well. Ella was stable on a low support setting from the ECMO machine and they tried to wean her off completely by clamping its tubing so her heart would be doing all of the work. During the time of being “off” the ECMO, her blood pressure was really low so it was time to think of other possible things to try. So right now they are trying to clamp the shunt they just put in to see if t would help. We were told there would be a low chance of it working, but you never know. The next option would be to go back into surgery and repair the leakage in her aortic valve. Everyone thought that the surgery Ella had on Monday would take care of that leak, but unfortunately it didn’t. If the clamping doesn’t work, we are looking at a surgery time around 3pm.

It’s so hard to see her like this. She is intubated and heavily sedated and paralyzed with medications, but when we talk to her or play with her toes or fingers we can see her little eyelashes flutter a bit. She knows we are here. I am so tired of her having to fight so hard. I just want things to get better. I have always heard people say hold your babies tightly and enjoy time with them, but I now know why they say it. We may never get the chance to hold her again. And it hurts knowing that. I keep wondering what it will be like to walk out of here without her and saying goodbye to everyone here at the PICU. These are all things that you never think that you’ll have to do. We can never thank these people enough for trying to keep our baby alive and allowing us to have this much time with her. I am holding tight to the good memories of the nightly walks around our complex all four of us, the times watching Matt, Eli and Ella reading together on the floor, the times of watching her eyes get big when playing with her toys with her on the ground, and the times of kissing her little face even when we knew she wasn’t the biggest fan of it.

We know God has used her life for His good and pray that He continues to do so. I pray that if He does take her soon, that she will be welcomed into His arms and learn all of the things He has done and plans to do with her story.