Wednesday... Thursday...Friday-We Are Home!

Wow. Talk about a whirlwind. 

Sorry I wasn't able to update everyone on Thursday. Things just got so busy!!! It was so different than when we had Ella in the hospital. All we could do is sit by and watch her sleep and on occasion we got to hold her. During Eli's stay, he wanted us to feed him because it was painful to lift his arm, we helped the nurses get the tape off of the IVs, and we helped him get up to go to the bathroom or for a walk. So it was much busier than what I was expecting.

I'll start with Wednesday afternoon. The day got jam packed with Eli getting a nice wipe down-type bath, sitting up in a chair for the first time, and his chest tube was taken out! Yippee! Both were hard for Eli. Sitting up was really important so that Eli could get his chest tube out. It would allow the excess fluid in his chest to exit so he could then get the tube out. The chest tube was really weird feeling and uncomfortable so we were excited to see it go so soon. Eli was such a trooper that day. You can tell in these photos that he wasn't too stoked about any of it other than matching Bun Bun in the hospital gowns that his grandma made for them. He later took a nap and played some video games!

                                               Matching Bun Bun                       Sitting up!

Getting the chest tube out. Don't look too closely if you don't like that kind of stuff. 

Also, look at Sharlene coaching him through it, she was amazing.

Playing video games with Dad, it was obvious we don't play video games 😆

                                            

Overall, Thursday was a great day! It started off really well and he looked great!

See? Didn't he look good?? He had a great night before and Matt woke up to him chatting with his nurse and telling her all about his friends and home life. He also got to watch TV in the middle of the night which was SO COOL to him 😆. His nurse even let him use her flashlight that was in the shape of a frog. He named it Greenie. Matt texted me updates throughout the night and I would wake up to Lily needing to be fed and read them. It was so hard for me not to be there. I felt like such a bad mom... but there wasn't much I could do as I needed to be there for Lily too. 

Around 10am Eli got really emotional and cried a lot, which, in turn, was really painful. He was no longer on the strong pain meds and we could tell a bit. The whole experience was starting to get to him. He told us he just wanted to go home. We were able to get him one dose of medicine and he was able to rest. He took a nap that was a couple of hours long! It was just what he needed to get ready for the rest of the day. His nurse on Thursday was really patient with him and let him rest a lot. We gave him a "bath" with wipes and a weird shower cap thing that washes your hair with no water. I don't know if you can tell by this picture but he was NOT a fan. 😆

Eli got up again and this time it was to go for a walk!  He was not so sure, but we had Penny, the therapy dog, to help lead the way! 

He was so proud of himself! And check out that gown! He picked out that fabric because it looked like his pig, Starla. 

We were then able to get the central line in his neck taken out. Eli really hated taking off the tape that held the lines in place. His nurse took 20 minutes wiping his neck with the orange oil wipes to help remove the adhesive. Matt and I kept telling her to just rip it off but she told us she couldn't because she promised Eli she wouldn't. He was really grateful for her and cried when she left. 

We were hopeful we were going to be able to go home the next day, we just needed him to poop (weird that that's a requirement, but it shows that his body is getting back to normal) and his chest x-ray needed to show that his lungs didn't have excess fluid in them...

That night Eli got up to take another walk. This time it was to get over to the window to see 3 of his grandparents and Lily holding up signs. As he saw them, he just started crying. It was all too much and he really missed them. 

                                                                                                     Can you see us in the window?👇

  

Saying goodbye to Sharlene

Fast forward to Friday... Matt and Eli got a great night of sleep! Eli took a big poop and his chest x-ray looked good so we got the all-clear to go home! Eli still had 3 IVs in so we worked on getting the tape off and Penny the dog sat at the foot of his bed to cheer him on. I was a bit more gentle taking off the tape, so I was on the job!

                       

                                        

The IVs were taken out and we were cleared for take off! Matt and I couldn't believe it! Discharge was always several hours long with Ella and now we were done in a flash. We said goodbye to our friends and were on our way. 

                                                                                            Eli and Melanie

    

We went to meet up with Lily, Grandma and BB at the airbnb that they stayed at. The reunion of Eli and Lily was so cute. 

Lily was so excited to see her brother!

We then headed home and Eli wanted Chickfila for lunch. While driving home, I looked back and Eli started crying. I asked him what was wrong and he said that he was going to miss the nurses and our hospital friends. Matt and I looked at each other and knew exactly how he felt. He experienced this really traumatic thing and yet they made it so that he missed being there. I feel like this is so telling of the impact that they all make there. They are such a gift. 

We got home and got the couch ready for a healing boy! 

 

                                                Check out the blanket 

                                                Sharlene made for Eli!

                                               Go Dodgers!

We had the grandparents over for dinner and Eli was so excited to see them in person again.

Things I've learned this time around...

-Hospitals are weird places... Filled with joy when a new baby comes into the world or someone is healed and gets to go home. But also filled with sorrow, families losing loved ones, parents watching their children suffer, and so much more.

-God has been gracious. We didn't really experience any PTSD and I know it's because God was protecting us. The only times that shook us a bit was watching Eli in pain and when there were 2 kids "coding" (dying). The sounds of the code blue alarm went off twice while we were there. The deep buzzing sound then the announcement of the code over the intercom brought back memories of the night we almost lost Ella and the few calls that we received saying that something was wrong with our daughter. Each time we heard the code, we stopped what we were doing, prayed and cried. We know what it's like to be the parents of a child that was coding. 

-Don't forget to pray for our hospital staff and the families that are experiencing the craze, no matter what hospital. I remember on occasion to pray for them, but they really need constant prayer.  I hope to be more intentional about this.

Thank you for praying for us and going through all of this alongside us. We really cannot thank you enough. 

Love,

Jillian

Good Morning.. Or Afternoon!

 

Good morning (I guess it's afternoon now!) from Eli!

He had a pretty good night last night. They are continuing to lower his medications and sedation. They were able to take him off of oxygen as well. It feels so weird having a child who is doing well after surgery 😆 He has gotten his temperature probe and catheter out. Matt took off the sticky bandages that were holding them on and Eli was not a fan. The IV trees with medication are out of his room now. Lots of things are being removed which is a GREAT sign!

We have our friend, Sharlene, as his nurse today, which we were excited about. She loves the Dodgers, so back when Ella was here, we bonded quickly! She says he is doing really well too. So that's great! 

Pray for Matt to get some rest. He was up a lot with Eli last night. He said he got about 4 hours of sleep, but only 2 consecutive hours. 

There's talk about Eli getting his chest tube out today, which would be so amazing because then he could get up and move around a little more. We are going to help get Eli up in a chair to help get the last of the fluids out of his chest tube and then he will be put into a normal hospital bed (he's been in a gurney-type bed). I think he will like that a lot more.

We had rounds with the doctors and staff and it was probably the shortest round I have ever experienced. HAHA! All is well!

He's definitely sassy and tells us what to do for him, which is a good sign that he's feeling a bit better. 

Lily continues to have a blast with her Grandma and BB. They have been playing, napping and taking walks. We are so thankful to have them. 💜

Thank you for your continued prayers! 

Love, 

Jillian

P.S. Look at this beautiful sunset from Eli's window last night. What a gift!

Seeing Our Sweet Boy

 This will probably be the last post for the day... 

We are with Eli now!

We are so thankful to be able to see Eli now! He has opened his eyes a bit and moved his arms around. He even got a little feisty and tried to take out his oxygen tubing from his nose! 

Praise God for keeping him safe! We have such an amazing team here at Sutter. We are so thankful!

Everything looks good so far. He's comfortable and just resting.

Before today, I kept praying that God would allow him to come back to the PICU without the breathing tube (extubated)because Ella was never able to successfully extubate. So this was a big fear of mine. God was so gracious and Eli was able to extubate in the operating room! I am so thankful that I didn't have to see him that way. Even though he was extubated, it was hard to come into the room and see him laying there hooked up to everything. He opened his eyes and saw us and winced and cried as if in pain... I guess that's to be expected when you have your ribs broken and skin cut open... 😳 Tears ran down my face as I watched him struggle a bit. One good thing about having to wear a mask the whole time is that people can't tell as easily when I'm crying haha!

We cannot thank you enough for praying for our boy. The hospital stay should be between 3-6 days so much shorter than we are used to! I ask that you would continue to pray for him to heal and that his pain would be managed well. Please also pray for Matt as he is sleeping in the room with Eli this week and we only got 3-4 hours of sleep last night, so he is exhausted. I would also like to ask you to pray for the boy that took Eli's previous surgery date. He has been on ECMO (life support), which we've experienced before, and he doesn't seem to be doing very well. Pray for him and his family please. It is weird not having the sickest child on the floor. Makes my heart break for his family since we know it all too well. 

Love, 

Jillian

Surgery Updates!

Hi everyone! 

Eli has been doing well in surgery. We got our first update at 9:35am and they said that they were able to make the first incision. For those of you that don't know, Eli's surgery is not through the middle of his chest. The surgeons are able to enter from his right side. It's called a right thoracotomy incision. Only a few hospitals in the US do this procedure and Sutter is one of them!!! It is less invasive, as they don't have to break his sternum to get to his heart and they go through an artery. It's pretty amazing what they do!!! We are so thankful that this surgery was available to him. 

We got the second update around 10:40 or so, and things were going well! We will get an update every hour or so until it is finished. Dr. Watanabe told us that he was thinking it would be done around 12pm.

We have seen a lot of our "extended family" (the hospital staff) today and yesterday. It's crazy how we just easily slip right back into this role. I thought it would be hard for us to be here after all that we endured with Ella, but it really hasn't been. The hardest part for me was when we were on our way to the x-ray area of the hospital yesterday and walked down the hall that goes to the operating room. We walked that hall so many times, not knowing if our daughter was going to come out alive or not, so it stirred up a little bit of emotions for me, but it was more of a longing for Ella, rather than a traumatic experience. 

The Child Life staff member that helped Eli this morning was so sweet. As I said before, Eli went into his room and on the bed were some Hot Wheels and a track to play with as well as a gift from Child Life that had Cars toys and art supplies and a Lightning McQueen pillowcase. He was so excited. This boy has been gifted so many wonderful things during this season of life. It has been such a blessing!

After we changed him into the hospital gown, we sat and prayed for Eli. He got a little teary eyed as he was feeling scared about what was coming. It was a sweet time together to just pause in the midst of all of the people coming in and out and pray for him. 

Later, he was told about all of the tubes and things he would be connected to after his surgery, but as the Child Life member was telling him about them and showing them to him on a doll, the Versed (It helps to cause drowsiness, decrease anxiety, and to decrease his memory of the surgery or procedure) really kicked in and he was barely able concentrate or talk. He was so silly and kept looking at my face and telling me, in a very slurred way, that I look like I have four eyes.😆 He also told the nurse that came in to wheel him to the OR that she looked like she had three eyes. So he was definitely all loopy! It was a little hard for Matt and I to see him like that, but we would rather have seen him like that than crying and scared. I am still picturing how he was looking at us as they wheeled him away... Can't wait to see his face again.

Currently, Matt and I are sitting in the lobby that we used to call our living room, watching the Disney movies that are on the TV. Two down, who knows how many to go! It is right outside of the PICU. 

On another note, it feels weird being here on a surgery day and not being with our parents. They were always here with us on these days in our "living room". I know that they wish they could be here with us too. 

Just got the 3rd update: They are currently "warming him" and he will be off the bypass machine in about a half hour! Thank goodness. I keep thinking about how amazing it is that these machines exist. 

We know that he is in the BEST hands (God's) and the second best hands (the hospital staff's). Thank you for all the prayers!!

Here are some photos from yesterday and this morning:

Yesterday in the Pediatric Day Unit for the pre-op things:

(He was so excited to actually get to watch Hot Wheels videos on an iPad)

Eli and Daddy playing with toys

Toys he got for being so brave during the blood draws and covid test

We had to get dipped cones at Suzie Burger!

This morning in the PDU before surgery:

Hot Wheels races with Dad

Feeling really loopy, ready to go!

Both Matt and my moms are taking care of Lily while we are at the hospital. Eli was so sad that he wouldn't see her for a while...

She's having a good old time!

Love, 

Jillian

Brave Boy!

Good morning everyone! 

Yesterday Eli got a chest x-ray, EKG, covid test, and blood work done. He was such a champ! He was so obedient and brave. 

We got to see some of our friends at the hospital too, which was fun. I feel like that is the silver lining to being at the hospital. We get to have a little reunion! 

We got here bright and early (5:30am) and Eli was greeted with lots of gifts from the Child Life Program. He got a lot of Cars gear! He even got a Lightning McQueen pillow case! 

We are now waiting to meet with the surgery team to discuss what the plan is. He is scheduled to go into the OR at 7:30am. 

Thank you all for praying! Once I get my computer, I will be able to post some photos! 

Love,

Jillian

Six Months.

Hi everyone!

It has been a really long time since I've written to you. A lot has gone on for our family and I figured I'd update you on our lives and loss.

Today marks six months without our Ellabean. Six. Months. These six months have been some of the hardest we've ever encountered, and yet, we still have joy when we think of her and thankfulness for the time that we've had with Ella.

Ella's service on August 10th was such a gift to our family. We guess that about 600 or so people came to show their love to us and to Ella. I was able to show people pictures and toys that represented Ella. I was able to show people that even though she had to stay at home and was always hooked up to machines that she LIVED and LOVED. I got to show people videos of how she would laugh at Eli, dance with her dad, and snuggle with me. She wasn't just a character that I would write about. She was a living, beautiful girl that had only half of a heart, but it loved as if it was whole. I had a lot of people come up to me after the service and say how much they appreciated the slideshow that had pictures and videos of her because they felt like they got to really experience her although they had never met her in person. The service that I didn't really want to have turned out to be such a gift to us. Eli still talks about it and how our friends and family who live far away even came because they love Ella and us. He talks about how fun it was and how great it was to see everyone. I didn't realize how healing it would be for him. We know some of you wanted to be there and we are still working on uploading the video of the service on here somehow.

We get asked, "How are you doing?" a lot. People honestly want to know how we are doing (which is amazing!) and it's hard to explain in a quick fashion, but usually I say, "Overall we are doing well. We have our moments of extreme grief, but we make it through them together." Which is true, but there's so much more to it than that. Over the last six months we have had to accept that we will never get to hold our daughter, kiss her, or dance with her ever again. We have had to explain to Eli that it's ok to be sad and that it shows how much we love her. We've had to explain that he's still a big brother even though his sister isn't here anymore. We have had to go back to how life was before Ella was born. The realization of not being able to see the people that we saw on a regular, if not daily, basis was hard. We would not see our home nurses, the hospital staff, or any of the cardiac team that we had come to love as family any more. It was a weird shift. We had to go back to jobs where we had to explain to people that the baby they had been praying for for 14 months was now gone, and we continue to find people that don't know she is gone and we have to explain it all over again. We were back to a family of 3 and it angered Matt and I. "No!" we'd think, "We are a family of 4." This was, and still is, hard to accept. Our lives were so different when we had Ella with us and to all of a sudden not have to have a medications measured out and the schedule memorized, baffled us. I still have the syringes measured with her medications for the day in my closet, I just can't seem to get rid of them yet. It just felt wrong and so incomplete. We still have unintentional hurtful reminders when we talk with strangers that ask us a normally simple question... how many kids do you have? And yet, for us, this isn't a simple question and it will never be. We have to decide whether or not it is worth going into with the stranger or just simply saying two and thinking of what age Ella would be at that moment. We've had to have the 29th of every month be a reminder that another month has passed since we last kissed our girl. I read somewhere that the farther we get from the last time we saw her, the closer we get to seeing her again. I love that perspective so I try to remind myself of that rather than how long it's been without her. I have had weeks where I cannot go one day without crying and weeks where I can't remember the last time I've cried. Weirdest of all is that life goes on around us like normal and we are left to figure out another new kind of life.

Working through all of this is HARD. But we remind ourselves of the time that we did have with her and that this was God's plan all along and that's where we find peace. We used to hate changing trach ties and yet we say now that we'd do 100 a day if that would mean that we get to have her back with us. It's funny how our perspective can change! We have seen how the people around us love us and care about us. We have seen how many people Ella touched and how God used a little baby to bring glory to Himself. I feel like she preached the gospel through her short life more than I ever have in my 30 years. I reflect back on our time with her in the hospital and the time at home and I am just so amazed at how present I felt like God was. He was walking us through all of it every step of the way. Honestly, now that life is "easier" I miss that feeling of God walking alongside me. I know that He is, it's just that I don't take the time to recognize it as much as I used to. I find myself getting sucked into the busyness of life and rarely taking time to admit how dependent I am on Him. I remember our pastor telling a story about missionaries that had been taken captive. They had been released and returned to the states and reunited sometime later. They all talked about how they missed being in captivity because the presence of the Lord was so strong and evident during that time. Can you believe that? They missed being mistreated and in fear of their lives because they felt the presence of the Lord much more. I've reflected on that a lot because I realize how much I miss being in the trenches with Ella because I felt the presence of the Lord so immensely during those times. And yet, here I am now, sitting on my couch cuddled up in a blanket... comfortable and it feels so off. It's a weird thing! I don't really know how to explain it. I often pray and ask God to hug Ella for me since I don't get to anymore and it brings a sense of comfort to me. I can picture her cute little body getting the embrace that we all long for.

Fast forward to mid-October and we were presented with an opportunity to move to a beautiful house with a big yard. So we ended up moving there early in November. This came with a lot of excitement and a bit of hesitation. We were leaving Ella's home. Her only home (other than the hospital 😊). At times it felt like we were leaving her behind. Our old home was exactly what we needed for Ella: the large downstairs with a master room for her and her nurses that was easily accessible to the living room where we would nap, snuggle, play, do therapies, and have dance parties in. We were close to the freeway which was helpful when we needed to get to appointments or would need the ambulance to get to us quickly. It was like this home was designed exactly for Ella and we had no idea when we moved in many months before she made her appearance how perfect it really was. I feel like our new home has been a place of restoration for me. We are blessed with an incredible view that I just get lost in. I don't have to look at a room and picture the traumatic things that happened on the morning of June 29th. It has been hard being in our new home, yet healing at the same time.

We also found out in the beginning of November that we are expecting another little one. Our third baby is on his/her way and will be joining us around July 20th! This has been exciting and yet a little scary. We knew we wanted to have multiple children and we didn't want Eli to be an "only" child so we took a leap of faith and knew that this was God's plan. We didn't want to live our lives in fear of what could happen. We wanted to live knowing that God is the One in control and we will follow whatever he calls us to. Being pregnant has brought forth a lot of different feelings... imagine that! 😀 We are SO excited to welcome another baby into our family, yet I have this odd tinge of guilt, as if we are moving on, even though we know Ella is irreplaceable. It makes me sad thinking that this baby will never have been able to meet his/her sister, but I know without a doubt he/she will know all about her. We also know the reality that we face may be another baby with a heart defect due to something in our genetics, but there's also a good chance he/she won't. Matt jokes saying, "Bring it on. We can handle any other baby." I don't feel the same haha! We went to our first OBGYN appointment and got to see the baby wiggling around and waving at us. It was wonderful! The doctor also said that the heartbeat sounded strong, but Matt and I looked at each other and whispered, kind of laughing, "We've heard that before!" (both of our kids had strong heart beats at this appointment). We will probably be sent to a specialist due to the high risk we have and will find out more info at that appointment!

Wow. Lots of updates. Thank you for your continued prayers and I pray that this new year will bring about lots of joyful experiences for you!

Love,
Jillian

Please Join Us...

Hi everyone!

Thank you for all of the prayers, texts, calls, meals, and cards. We are, once again, overwhelmed by how amazing the community around us is.

We will be holding Ella's service at Twin Cities Church on Saturday, August 10th at 11:00am. We would love to see you there! There will be a dessert reception following. The service will last about an hour, so you will have time to go to the fair for lunch after 😉😆.

If you have any questions, you can email Jillian @ jillian.r.waechter@gmail.com

Ella's obituary will be in The Union newspaper tomorrow or can be found on theunion.com for about a month.

Hope to see you there!

Love,
Jillian

Does God Know How to Suction?

It's with a heavy heart that I write to you...

Our sweet Ella girl went to Heaven on Saturday morning.

Her passing was really sudden and we are still trying to figure out everything and how to live without our precious girl. We have said many times that our lives were changed more on Saturday morning than it did when she was born.

For the last 14+ months we have fought alongside Ella and asked Jesus for her healing each and every day and now she is healed.

At 5:43am we got a phone call from our nurse, Rochelle, who has been with us five nights a week, 9-11 hours a night since we brought Ella home in October. She asked us to come downstairs because something was different about Ella. I ran downstairs and Rochelle quickly explained that Ella was in heartblock, which was her norm since April, then something in her behavior changed and her heart rate dropped lower than normal and she was now not responding. We called Ella's name and tried to get her to respond, but nothing was working. Rochelle quickly started giving compressions and Matt was on his way downstairs and I called to him and asked for him to call 9-1-1. He calmly called and Rochelle directed us to do different things to help prepare for the paramedics. They arrived and took Ella to the hospital in Grass Valley and continued CPR as we followed in our car with Rochelle.

We got to the ER and a few minutes later the doctor came out and told us they were trying everything they could and I said, "...but it's not looking good right?" and he said, "Yes, it's not looking good." We told him we just didn't want to make the decision to stop, so he did for us. We think that she passed at home really quickly because she never responded after.

We really related to something that another family that lost their child wrote, "As a family, we walked with her as far to heaven's gate as humanly possible, and even then we still lingered to make sure she was safely inside." We stayed with Ella's body in the hospital for a while and our parents were able to come and say goodbye as well.

We saw God's hand in a lot of the details from that morning. Eli was sleeping through the whole process of having the first responders in our home and we live so close to the Waechters so they were able to come to our house to watch him until our friends came to get him. She didn't pass away at Sutter so our PICU family didn't have to be there when she passed and I won't remember that hospital as the place where we lost Ella. We spent a great night outside the night before celebrating Linda's (my mother-in-law) birthday and Ella was so happy. We prayed that God would make it clear when it was her time and that we would not have to make the decision of letting her go and we didn't have to. Matt's brother and our sister-in-law were planning on coming up on Saturday to go to a theme park with Matt's parents so they just made the trek a little further up to Grass Valley. We also had a special relationship with Ella's night nurse and were thankful to have her with us during the traumatic experience. And much more.

Speaking of Eli, telling him was hard, but also sweet. As Shakespeare says, "such sweet sorrow". Once we got back, he walked into our house and asked where Ella was and where we were. We responded with, "We were at the hospital," and he asked if Ella was there and then we all sat on the couch and talked about how Ella was now in Heaven with Jesus. I've never seen him cry like he did. It was different than any other time. It was full of sadness and we could tell he understood as much as any four year old can. He told us that now our family had no babies. He ran to her room and looked in her bed and cried a little more. Then he got panicked and said, "SHE FORGOT HER EQUIPMENT!!!" because her ventilator and everything was still by her bed. We explained how she didn't need a trach anymore and how she was healthy in Heaven.

We had our family with us the rest of the day and we would take little breaks and go into Ella's room to cry and just sit. Eli came with us a couple of times and one of the times that he went in there with Matt he asked, "Does God know how to suction?" (meaning suction her trach). It is something that I will never forget.

As with any loss, we've struggled and tried our best to press into God for his strength. We have received many text messages and phone calls and have loved reading them. Thank you for reaching out and letting us know you love us.

I will write another post about Ella when I am in a better state, but for now I just want to thank you for the amazing support you've all shown us throughout this journey. Please continue to pray for us as we adjust to this "new norm". Please pray for our families and for our medical staff who grew to love Ella as their own.

We are hoping to have Ella's service on August 10th, but it is not officially set yet.

Love,
Jillian

Results of the Heart Cath

Hi everyone,

So the cath was done around 2:40! It was done much quicker than anticipated, so that's cool! Unfortunately there wasn't a ton good news from it, but I'll start with the good points...

• Her collateral veins that she has created because of the clots are doing well! Her body created a relatively large one which is good. 
• The IVC (which would be used in the Fontan) is at 15.5mm and we needed it to be at 15mm to be able to do the next surgery.
• The pulmonary valve pressures were good!

Now with the tricky part... Her aortic valve has big issues. The leak that they have tried to correct in surgery (last August) is not resolving and is worse off than previously thought. It is creating pressure issues which is not allowing enough blood flow for to her heart (coronary arteries).  

So what does that mean now? 

Two possible options: Fontan surgery with an aortic replacement or a heart transplant.

Dr. Hill will be talking with Dr. Nasirof and Dr. Watanabe (surgeons) about the risk factors in the Fontan option tonight. Dr. Hill has never seen an aortic valve replacement on a single ventricle child. Shocker right? HAHA! Little Ella... Always trying to test the doctors... They will also be contacting Dr. Hanley at Stanford to get his input, but this won't be until Monday.

The heart transplant would be risky, but possibly less risky than the Fontan/aortic valve replacement--we are still waiting to hear what the surgeons say. The transplant would also mean that we would have to be down at Stanford for three months. BUT it would mean that she could live a "relatively normal" life. 

There's risk in everything, but we know who holds her in His hands and there's no other place we'd rather have her.

Matt and I are still processing it all, especially because it was not what we anticipated... It's hard not to be frustrated or angry about it. Tonight we will stay at the Ronald McDonald House and mull it over. They are taking one med away and want to see how she reacts so we will be here for another 48 hours checking on that. We are going to try sprinting her off the vent while we are here as well. 

Love,

Jillian

Heart Cath

Hi everyone!

This morning we left our house for Sacramento, ready for Ella's heart cath. We got to the hospital and saw two people that we knew before we had even checked in! We were in the PDU from 9-11:30ish answering questions, meeting with Dr. Hill, her cardiologist, and Dr. Crockett, the anesthesiologist, and playing with Ella. She was so happy, it was such a sweet time with our girl. She definitely has the "A" team in there with her today, which we are thankful for!

So far, no updates, but we were told this could be a while. I will post updates as I get them!

Thanks for all of the prayers everyone!!!

Love,
Jillian

Two BUSY Months!

Hi everyone!

I am so sorry I haven't blogged in a LONG time. Two months! To think, some days I was posting something every two hours. But here we are two months later and TONS to fill you in on. I'll start with the medical stuff then move on to what we've done these past two months.

First, in the last blog we talked about a heart cath that was coming up. This procedure is the one where they go through an artery in Ella's leg with a scope and check on the pressures in her heart, lungs, and any other things they want to see. This cath was supposed to be done on April 15th, but Ella had other plans and got sick about a week prior which meant she couldn't have the cath done. She'd have to wait another 6 weeks. I was SUPER bummed about this because I am yearning for answers with this little one, but I am also kind of thankful because it means that we have more time together before she goes back into the hospital for an anticipated longer stay. The cath is now postponed until the 10th of June, when I am done with work for the summer. This will also be good timing because the PICU didn't allow kids under 12 in the unit until May because of the risk of more illness being spread, so Eli wouldn't have been able to come to the hospital to visit at all. So there we are! Silver lining!

Dr. Hill will be performing the cath and said there is a 70ish-% of her being able/needing the next surgery, the Fontan, shortly after the cath. They will be checking out the collaterals that her body formed because of the loss of the arteries in her neck due to clots, the pressures in her heart and lungs, and the size of her IVC. The IVC needs to be at least 15mm in diameter (I think) to be able to do the surgery successfully. To be completely honest, I have no idea what they do with the IVC in the Fontan but I know it's one of the key components. Having this surgery would mean that Ella would have normal oxygen saturations and would be out of the scary interstage.

Ella has continued to keep getting little colds here and there which have dramatically slowed her ventilator sprints. We didn't sprint her at all during the months of February, March, and April. It seemed like every time we felt like she was well enough to start them again she would get sick. So we are still on the vent 24/7. We are going to start sprinting her on CPAP again starting tomorrow. Our goal is to get her on that setting completely by the 10th of June... Not sure we will get there, but I think we will get close.

Ella continues to vomit 3-4 times a day. It's not like a little spit up, it's a violent gag and projectile barf... It's so sad. I hate it when it happens. When she starts gagging Matt and I often yell out, "Save the ties!" which means that we need to hold a washcloth in a way where the vomit doesn't get on her trach ties. Eli has picked this up and yells it out when he notices that she is gagging too, haha! The skin around her neck has been so irritated and red. It seems really painful. We feel like we've tried everything in the book to help rid her of the irritation, but nothing seemed to have worked until we tried a different kind of tie that she had in the past. We hadn't used these because her trach looked like it hung out a little more with these, but I think now that she's bigger it doesn't do it as much. It seems to be helping! It's only been a little over a day so we will see if it truly is helping, but I am hopeful!

Back on the 16th of April we had an appointment at the Pediatric Day Unit (PDU) where we pulled 50mL of blood from Ella and replaced it with IV fluids. When we were in the hospital back in February we noticed that her labs showed a really high hemoglobin level. Her level was at about 21 and a normal person would have a level of 13-15. This is due to the low oxygen levels and her body compensating by creating more red blood cells to carry oxygen to her body. This seems to have helped with the redness, and possibly the puffiness, in her face. We got labs done shortly after the blood was pulled and her levels were down to around 18. We now have Ella on about 3L of oxygen at all times now to keep her hemoglobin levels lower and her oxygen saturations up. Unfortunately it's another thing she's hooked up to at any given time, but we figure it'll be for a short time period and hopefully it'll work the way we want it to.

We have not had a nurse on Mondays and Tuesdays since the middle of March so I have been home with Eli and Ella. It has been stressful, but also kind of sweet. We rarely get time where we don't have someone else in our home and these days have forced me to stay home and enjoy my kids. It's definitely not an easy task remembering to do all of Ella's medical and developmental needs as well as take care of Eli and his needs. I've had my fair share of break downs, but I am starting to like having those days with them.

ELLA TURNED ONE ON APRIL 5TH!!!

Some people weren't sure she would make it to one and look at her now! It's pretty amazing to see how God has carried her (and us) throughout this last year.

The night before her birthday I was reflecting back on a lot of the things that we have had to endure this year. It kind of rocked my world. I haven't really allowed myself to reflect back on the last year until now. I'm not going to lie, I have a lot more anxiety and cry pretty regularly. BUT I have also seen and appreciated the grace and mercy that God has shown our family over the last year. Our lives before Ella seem like a lifetime ago. Reflecting on her birth, first open heart surgery, the night we almost lost her, and all that came with her first 6 months of life have been really hard. Honestly, I often try to find things to distract me from thinking about it. Thankfully I have a high maintenance little girl that often keeps me distracted 😀.

Eli and I made pancakes with sprinkles to celebrate and decorated the living room for her birthday. We had a family party at our house for her the following day and it was so fun. Ella has become so social and loves watching people. She has serious FOMO--Fear Of Missing Out-- so she often doesn't nap when she's around people. We had her sit at her high chair and all sang happy birthday as Eli helped blow out her candle. Matt then looked at me and whispered, "Hey, I was thinking it'd be funny to have her ventilator blow her candle out." So I relit the candle and we disconnected her vent real fast and it blew it out! It was so funny. When you have all of these medical things going on, you have to find ways to laugh about it or else you'd go insane. I was feeling kind of sad that Ella doesn't know how to eat and wasn't sure how the whole "cupcake-thing" was going to go, but it turned out better than I could have ever hoped for. Ella played with her cupcake, squishing the frosting and crumbling the cake around with her left hand. I looked away for a little bit then looked back at her and saw that Matt had his face close to her hand and she started to feed him. It was the sweetest thing, better than I could've ever imagined. I didn't feel like we "missed out" on any of the first birthday traditions that healthy babies get. We got something else, something unique, and something so special that I will never forget.

Next was Easter Sunday and it was the first time that Ella went to church!!!!! It was such a special morning. I texted our pastor the day before telling him that she would be joining us and that we would most likely sit outside so that her machines wouldn't make too much noise. He responded by saying that we are welcome to stay inside and those noises would be a blessing. I never would've looked at it like that, but how true. All of these noises mean that Ella is still with us, still growing, and still giving us those big toothy grins. We walked into the church to see signs made saying, "Reserved for Ella". It was so surreal. It was hard to hold back the tears. We were finally able to be a whole family at church. This was something my heart had hoped for, for a long time now. Ella loved it too. She loved watching the people and listening to all of the people singing. It was so great. Our pastor even announced that he doesn't normally point out when it's someone's first time at our church, but this was special. He proceeded to say how much Ella has been through and how excited he was that she was there. Lots of people came up to us to meet Ella and check in to see how we were doing. We were just about to leave and things started to get crazy, as they often do with our family. Eli took a dive, head first into the back of a chair, resulting in a rug-burn above his eye. I was handing Ella to Matt so I could comfort him and looked down to see a HUGE poop blowout all over my lap and a spot of it on the chair below. It seemed like things were going a little too smoothly for our little Waechter clan, so it was definitely appropriate that this was to happen. HA! It took us about a half hour to get my lap and Ella all cleaned up, but it was all so worth it. Getting to sit with Ella in my arms and Eli sandwiched between Matt and I made it all worth it. We are going to try to get to more church services before we go back into the hospital.

Egg Hunt on Saturday with our little buddy Trey

Check out the reserved sign 💜

Baby poop. All over... 

Still smiling!

The month of April was filled with lots of appointments, Eli's t-ball games/practice, work, Matt's softball games, family members in town, and ended with a golf tournament fundraiser for Ella. Matt's work had put on a car wash, online auction, and now they were putting on a golf tournament, all to help our Ella girl. It has been so incredible and humbling having so many people continuing to support us in all sorts of ways. We parked ourselves at the tee on Hole 1 so we could see people as they passed and thanked them for coming and supporting our family. We saw people that we hadn't seen in a long time and even one of the PICU nurses came! Ella didn't sleep a wink until we packed her up in her carseat when we were heading back to the clubhouse to meet up with people again, and even then she only slept for about 15 minutes! I tell you, she just loves watching people around her, it's so sweet how she smiles at people she's never even met. I love that about her.

One of Ella's nurses, Sharlene

May hit the ground running with Eli's 4th birthday. I was thinking about his 3rd birthday and what a failure I thought I was because I couldn't decorate or make him something special for his birthday. It seems silly now, but it was so sad for me a year ago. I made sure to decorate this time and make a special birthday. I didn't have a nurse, so we couldn't leave, but we had fun activities planned and friends that came over to make him feel like it was his day. His grandparents all came over for dinner and dessert to celebrate as well. He had a small dino-themed birthday party with his buddies on Saturday as well.

So as you can see we've been busy, busy! Next is Mother's day, Open House at school, Matt's birthday, the end of school for me and Eli, then we are back in the hospital for the heart cath! It's going to fly by!!!

I will keep you all posted if anything new arises, otherwise I'll check back after the heart cath on June 10th. Thank you for continuing to pray for our family!!!

Here are some more photos of recently!

Love,
Jillian