Overwhelmed

Hi everyone!

So... We are going home! ... on Tuesday. At least that's the plan.

Ella has done pretty well over the last few days sprinting onto pressure support only, so mostly breathing on her own, but receiving extra pressure to her lungs to help keep them open. She did 8 hours (two- four hour increments) yesterday! These are more like strolls than sprints, but hey, I'll take it. I say that because she has been breathing mostly above the ventilator's set rate anyway so it's almost as if she's been on pressure support the majority of the time as is. But whatever! I'm happy about it! We are hoping to wean her off of the ventilator at least during the day in the near future. Some doctors don't feel like she can do it on her own without the ventilator at night because ever since her stroke, she's gone a little apnic at times (stops breathing for longer than the ventilator settings have allowed). I'm not totally sure of what I think is best at this point so I'm just focusing on the now and how to help her get off the vent eventually. Her need for extra oxygen for some reason has heightened. She was on room air (21%) for most of last week and now she needing 35%. We aren't totally sure of why she needs it now, but I figure that's the least of our worries at this point.

We got the home vent delivered to us today. This is a huge step toward discharge. This is the main thing we've been waiting for this week. I was taught how to use it and what settings she's on. It was so much information that I am glad we will be here the next few days so I can get some practice in. I'm not going to lie, I am really scared of the ventilator. Ever since she had that mishap with the ventilator back in April, vents have given me a bit of anxiety. I am really upset that Ella has to go home on one, but I know it's what she needs. I seriously hate the thing (aside from the fact that it's been keeping her alive 😉). The respiratory therapist that trained me was really thorough and sweet. She reminded me that this doesn't mean that Ella will necessarily be on this her whole life, it's just something she needs for now and it's helping her. I often forget that it's helping... I find myself wanting to push her, probably too hard, to get off of it and to breathe on her own. The ventilator is just so cumbersome and bulky. I have a hard time thinking of how she will ever have a "normal" childhood if she has to be hooked up to that thing. Just a walk to sit on our front porch will be a huge ordeal and I thought the oxygen tank was annoying. My brain constantly keeps thinking about how behind she will be developmentally because of this machine... How can she roll over? How can she crawl? How will she be able to do anything that she "should be able to do" by the time that she's a year old? I am also so afraid of it because if any setting gets changed on accident, it could be fatal. Talk about a lot of pressure (ha! figuratively and literally)... I think as I get more used to it I will feel better about it, but man, today totally overwhelmed me. I find myself get discouraged whenever I think of the future, so often I block it out of my brain and try to focus on the present... No living parenthetically or for the future right?  Thankfully we will have the same hospital RT here with us tomorrow so she can continue to train me and help me teach Matt how to use it all. I am reminded of that song that says, "Fear, he is a liar, He will take your breath, Stop you in your steps, Fear he is a liar, He will rob your rest, Steal your happiness, Cast your fear in the fire, 'Cause fear he is a liar." This was a song that Matt and I heard shortly after we made the decision to give Ella the trach. It was like God told us not to be afraid. Matt texted me simply, "fear he is a liar", the other day when I had a feeling that Ella's MRI results were bad. This song has been helpful to remind myself that I don't need to be afraid because God has this. He has us. He has Ella. 

Aside from getting trained on the vent, I was on the phone a TON today. I was taking calls from health equipment reps, doctors, pharmacists, etc. It was one of those days where I just had to get a lot done but didn't really want to 😆. Thankfully Ella has taken this day as a day of rest and has slept the majority of the day so I didn't feel bad for not paying as much attention to her as normal. The main call that I have been dreading was getting all of my work stuff figured out. I have been so thankful to have had so much time off, but my Family Leave is coming to an end on Oct. 12th. Thankfully I have another option. Stress leave for up to 3 months or I could take a leave of absence this year. The leave of absence means that we would have no insurance and we all know we need that! So I had to call my doctor to ask for a letter to receive a medical leave for stress. I thought it would be as easy as that, but it's not... I have to go in for an appointment to talk about everything that's been going on with Ella and how stressful our daily lives are right now and will be when we return home. Thankfully my doctor is able to squeeze me in on Monday otherwise I have no idea when I would have been able to go see him. Another not-so-fun call was the one to Ella's pharmacy. I was so discouraged when I talked with them because it made me realize how many medications she is on. We are now in charge of 13 medications (not including vitamins or MCT oil) to give her daily and about half are more than once a day. It's so overwhelming. I thought the original eight we went home with the first time was a lot... My chart that I posted a picture of back in June is getting bigger and bigger. Most of these medications are heavy duty meds too which is intimidating. Thank goodness Matt and I are pretty type-A people so we are good with this stuff, but I am so nervous I'm going to forget something. I keep praying that God makes my brain sharp and reminds me of something if I forget it.

The other thing that has been tugging at my heart recently is that I will not be seeing all of my "PICU family members" anymore. As excited as I am to go home, my heart aches thinking of leaving because of them. Matt and I have talked about how this will be really hard because we've gotten to know them even better this stay and they have worked so hard to keep our baby alive. I know we can take care of Ella, but it just won't be as "fun" without them. I am really struggling thinking of saying goodbye to them. Even now as I write this, tears are falling down my face just thinking about it. It's like when people go through traumatic experiences, like shootings, accidents, etc., with (what were) strangers and then became really close with them because of the situation they endured together. These nurses, doctors, and RTs have become like family to us and it's so hard to think of not seeing them every day. They have loved on Ella, Eli, Matt and I through thick and thin. It is weird to think that we won't see them anymore. Thankfully we have social media where I can keep up with their lives but it just won't be the same!

This is our last weekend staying in Sacramento, which just feels so weird to say. It has been 66 days since we came back on July 23rd, almost as many days as our first stay. Hopefully we will get to stay home longer than 10 days this time. 💜

Love,
Jillian

The MRI

Well everyone, the MRI didn't go as we had hoped...

It showed that Ella had a stroke of some sort within the last six days. The infarction (the obstruction of the blood supply to an organ or region of tissue, causing local death of the tissue) happened on the left side of her brain which will affect her right side. The neurologist showed us the images of her brain (which, by the way, the medical field is insane, the advances we have now-a-days blows my mind on a daily basis) and even we could notice that the left side of her brain looked a lot more blurry than her right. As you can imagine, we have now been analyzing every move Ella makes. We have noticed a little bit of a difference in her right side's ability to do certain things like move her arms, fingers, legs, mouth, and tongue, but it all seems minor in most areas other than her right arm/hand. The neurologist came last night and told us that we will have to wait as it heals in the next 3 months to really see the damage done. He tested her reflexes in each knee and the right one took a couple of tries but it still reacted. Her hand on the right side seems to be impacted the most, at least that we've seen so far, but with therapy, I hope to one day get that baby working like it used to. The neurologist was also checking to see if Ella's eyes tracked with him. Now this was a part that I was really nervous about. Tracking hasn't always been her strong suit even before the stroke hahaha! She's often found looking a bit past you or checking out your forehead, but she did a great job with the doctor. I think God knew we needed a "win" in this area. We were told that Ella's speech and mobility (sitting up and walking) will be delayed as well. Matt and I have known that she'd be delayed anyway because she's been in a bed most of her life, so this news didn't come as too much of a shocker to us. He also noted that Eli is going to be the best therapy for her. He said that as good as we are at working with her, she is going to be much more intrigued by him and will learn more from him playing with her. So... no pressure Eli 😉.

I am still amazed at the fact that our PICU doctor, Dr. Mittal, thought of getting an MRI done. God has such an amazing way of orchestrating everything. When she received the call from the radiologist she couldn't believe it because it was ordered as more of a protocol. Babies that come off of ECMO alive will get an MRI done once they've gotten stable enough and we definitely hadn't noticed any change in her. Even right before Ella was going into the MRI, my mom and I were laughing at how much she was moving and how smiley she was. 

This news hit us pretty hard. It's sometimes difficult to believe all that she has had to endure. It just seems so unfair sometimes. And yet, she's still here and still smiling, so we will be here and smile alongside her!

Pre-MRI smiley, little, crazy haired girl

Post-MRI sleepy and snuggly

Cute little bow on a cute little sleepy girl!

Now for the GOOD NEWS!!! We were told today that we are looking at going home in a...

wait for it...

WEEK! YIPPEE!!! It may not happen, because you know... it's Ella, but hey! We have an estimated time of departure! How exciting is that?! We are going home on a ventilator unfortunately, but in hopes of weaning her off of it. She did her first sprint off of the vent today for 30 minutes and totally aced it, so I am hopeful.

A little while ago I was given a CD from a good friend, Yulianna, who's daughter, Brooke, also has HLHS. This CD has been in my car and playing non-stop. It has been such an encouragement to me. There's a song that I LOVE. It is such an encouragement to me. The chorus says:

And even when our hearts are breaking
Even when our souls are shaken
Ohhh, we've got this hope
Even when the tears are falling
Even when the night is calling
Ohhh, we've got this hope

The whole song is here:
https://www.youtube.com/watch?v=OnuC_zEugo0

The other song that has kept my spirits high and reminds me that God has us in His hands is found here:

https://www.youtube.com/watch?v=YeLnMegXeLc

God has blessed me so much with her friendship. Although our stories have been soooo different, we have been able to be strong for each other in times of weakness. We have been able to relate on a totally different level than we can with other mamas because our daughters are heart warriors.

God has been so good to us. Even though we are continually having things thrown at us, we press into Him to keep going. Sometimes I feel like Ella is like Job, having so many things thrown at her and yet God uses her suffering for other beautiful things. 

Love,
Jillian

A Little Break

Hi everyone!

The last days have been good! Ella has been able to be weaned to ROOM AIR no more extra oxygen!!! This is HUGE! She has needed oxygen support since June! So we are SUPER excited about that. One weird thing that's been happening is that Ella's breathing has randomly stopped while sleeping. We aren't sure why she has all of a sudden had this sleep apnea, but this may prevent us from either going home or getting her off the vent... Which leads me to another big decision we've encountered this week. The doctors have kind of left it up to us to decide whether or not we'd like to try to get her off the ventilator while here or go home with a ventilator and try to wean her off there. We have decided to stay a little longer and try to wean her off while in the hospital. So we switched her back to the NAVA ventilator which has a catheter that goes through her nose and touches her diaphragm and can detect when her body takes a breath so it supports her own natural breathing. The other ventilator would just force air into her lungs at a rate that it was programmed to do rather than going with her own breathing. BUT since we've switched to this NAVA setting, that's when she's developed the apnea. It's a bit confusing but we will continue to try the NAVA setting with hopes to wean her off the ventilator for about a week, then if she isn't making any progress, we will stop and switch her to a ventilator similar to the one we'd have at home. Ella tends to pull through at the last minute, so it doesn't surprise me that she is taking a while to adjust to breathing more on her own.

Ella getting time in her space-saver chair. It's fun to see her get in different positions!

Tomorrow Ella will be going in for an MRI just to double check on her brain and to make sure there's no neurological issues or brain bleeds. That will happen tomorrow at 11 so please pray that all goes well.

Recently I've had a hard time not being home with Matt and Eli. Yesterday I was really missing them and decided to just go up to Grass Valley. I left around 8:30 last night and surprised Eli. It was really fun to see him so excited to see me. We have stopped telling him when I am coming home or if we're going to go somewhere just in case Ella has other plans and changes ours. We've really learned how to live in the moment since we've had Ella. We've embraced every minute we've had with her and have stopped making plans for the future, in hopes that we will be content in the present. I remember my professor from Biola talking about "living parenthetically", or living for something else in the future. If I could just get to this... Or I can't wait until the weekend... Or I if I can survive this, then I get to do this... When in reality, none of us are guaranteed the next minute. We've seen this countless times with car accidents or shootings where lives are taken instantly and unexpectedly. We need to make sure that what we are doing now matters and that we aren't counting on something in the future. We need to live in the now.

Ok back to going home... So I was able to take Eli to preschool today and then have some time to myself at home. I have been using this time to get stuff done at home that I've meant to do but haven't because I'd rather be with Matt and/or Eli. Things like switching out my summer clothes to my fall clothes (ambitious, I know. It's supposed to be over 90 here this weekend). Or going through Ella's clothes and putting away the countless items that she never got to wear because she was in the hospital and has outgrown them. Around noon, I picked up Eli and we were able to go out to lunch with our friends. This was something that we used to do a lot and it was so great getting to feel a little more "normal". I always put this into parentheses because my life will never be back at that "normal" because most of the time my brain is still thinking of our Ella girl and wondering if she's ok.

I had planned on leaving after lunch and dropping Eli off with his grandparents, but I honestly didn't want to leave. I felt like I didn't get enough time with my boy. I asked him if he wanted to go home and take a nap with me and he got so excited and said yes. As he fell asleep I just started crying... I miss those days where I would watch Eli drift off to sleep. I miss the days that I would be there when he'd wake up with sleepy eyes and a big grin on his face. It all hit me at once and I was really sad. I felt like I was letting Eli down. I felt like I was choosing Ella over Eli, even though I know that I am not. I know it's just a tough season for our family, but it doesn't make me miss my guys any less. I cried out to the Lord and asked him to give me the comfort and peace that he has continued to sustain us with over these last few months. I am so thankful that God included Jacob wrestling with Him. It makes me feel like I can go to God with questions and wrestle over things with Him. It creates a closeness between us that I am so thankful for. I was able to be real.

After his nap, Eli and I danced around, sent funny pictures to our friends, sang songs, played with chalk, practiced counting our numbers, and pretended we were in the Cars movies, just like we used to. As simple as it sounds, it was just what this mama's heart needed.

Matt got home a little later and then I got ready to head back down the hill. The hospital room that was making me stir crazy last night, was a warm welcome tonight. I walked in to see Ella in a cute little outfit (Yes! A shirt AND pants! Not just pants!) and she opened her eyes as soon as she heard my voice and smiled. I got a good fix of both of my babies. 

Today was a good day. As hard as it was processing through all of my feelings that have been overwhelming me the last few days, it was good. And God is good. All the time.

Thank you for your continued prayers.

Love,
Jillian

Heart Cath

Hi everyone!

I am jumping on really fast to talk about the heart cath but it won't be in great detail because it can get confusing!

Dr. Hill entered Ella's room after the heart cath with a smile on his face. Overall, it was a success! There were a couple of different things that Dr. Hill was checking on and a couple of different options that he had when in the cath. He discovered that the BT shunt that was put in during her second open heart surgery is now completely clotted, which they were expecting. They weren't really using it so it is not that big of a deal for the most part. Her body has created collateral veins in place of the shunt which he was excited about because that means that she was receiving blood to her lungs through those veins while he went into her Sano shunt (the main one that was placed back in April). The Sano is the shunt that was damaged during compressions and Dr. Hill saw that the end of it was almost "hanging off" but he was able to place a stent in the shunt to hold it all together. If the piece that was "hanging" (I put it in parentheses because I am not 100% clear on what that actually means) broke off, it would go directly to her brain and cause a stroke. Talk about STRESSFUL!!! I am so thankful that he is so good at what he does. We were praying that God would guide his hands and keep Ella safe. Dr. Hill said that he would normally hope to take the scope a little further into the shunt and release the stent there, but he wasn't able to so he took a gamble and it went where he needed it to!!! He was then able to open the shunt bigger to buy us more time before another surgery would be needed.

So overall, we are really happy! Matt said, "I wonder if, after the doctors/surgeons talk to the parents about what they've done in the labs/OR and they respond with an 'Ok, thank you!", they think, you have no idea what a big deal this is, I just saved your child's life." We often respond with an "Ok thank you!" because we really don't know how huge these things are. Praise God for this place and all of the amazing surgeons, doctors, anesthesiologists, nurses, respiratory therapists, and other staff members. We are so blessed by all of them!

Love,
Jillian

All Smiles

Hi all!

Yesterday as I was about to go to sleep, I got a sweet text from Ella's nurse and this is what I saw...

😍😍😍

How cute is that?! Ella was smiling a ton for all of the nurses last night and those smiles continued today!!! This is really significant because she hasn't been smiling at us since she was admitted 54 days ago, and even then they were few and far between. So we were VERY excited! Matt and I got to hold her a lot today as well. She was awake and so happy--even during trach and wound care, which by the way, the wounds are getting much better!

Here are some photos from today...

Look at how chunky she's getting!!! So cute! We told Eli to look at the camera and smile  and he said that Ella wasn't going to so I think that he thought he had an out too. 😂

During the doctors' rounds today, we were told that the echocardiogram from yesterday showed something that made Dr. Hill want to get an xray with a view from her side. In the xray we saw that Ella's shunt and stents in her shunt were damaged from the compressions done last Saturday. This is most likely the reason we've had such a hard time getting her oxygen saturations back up. Recently, she's needed so much more oxygen and we weren't sure why, so it is nice to have some sort of explanation as to why she's needed more. So... that means... another heart cath... Tomorrow at some point between 12-2pm Ella will go into the cath lab with Dr. Hill and we pray that he will be able to fix the shunt easily. This cath is more risky in some ways than when she was on ECMO and got the other heart cath. Dr. Hill will have to stop the blood flow to the lungs quickly to repair it, whereas before, the ECMO machine took care of the oxygenation of the blood. Sounds scary right?? There's always a risk in each of the procedures, but we are so confident in Dr. Hill's abilities and we pray God will guide his hands. Maybe this is all it will take to get her progressing more quickly!!!

I can't believe tomorrow marks 55 days in the hospital during this admit. We only have 20 more days to match the amount of days that we were in here when she was first born. It's crazy how this has just become our new norm!

Please pray for the heart cath to go well and that Ella's sats would get better!!!

Love,
Jillian

The Detour

Hi everyone,

I had a little bit of time, so I figured I'd write to let you all know how Ella is doing. They haven't been the best few days, but they definitely haven't been the worst. 

Since Monday, Ella has been pretty stable. And by stable, I mean "Ella stable" HAHA! Her oxygen saturations have been ALL. OVER. THE. PLACE. She has been anywhere from 50-98. She's stumping the doctors and respiratory therapists. She has needed anywhere from 40%-100% oxygen support (remember normal air is 21%). And the ventilator settings have changed every day. Sometimes she needs more support in one area, sometimes less. It's all very confusing, but I am thankful to have such brilliant doctors, nurses, and respiratory therapists that try so hard to figure her out. The docs have told us that it seems like we will most likely go home with a ventilator. This complicates things a lot... It makes our home lives a lot more difficult. We will be able to leave the house, but instead of carrying 6 bags it'll be closer to 8. I don't think I totally grasp what it's like to have a trached kid on a ventilator at home, but all I know is that it scares me. 😁 I know the first time that we were discharged from the hospital we were told that we would most likely need the ventilator, but all of a sudden Ella's breathing got better and she proved not to need it. I keep asking God to perform the same miracle that He did then, now. Ella does seem to pull through when we really need her to 😊. She's good at that. And no, we still have not mentioned the d-word (discharge date).

We were able to remove an IV from her head which took a while because the tape was so stuck to her hair. I used an adhesive remover pad with orange oil that worked really well and Ella didn't seem to mind it. Poor thing, we are always doing something to her! No wonder she wants to sleep a lot, we always wake her up! 😊 It's always said not to wake a sleeping baby, but that rule doesn't really apply in the hospital. I am glad the IV is gone though because now I get to rub her fuzzy head more.

She is starting to get bolus feedings. This means that they compress the amount of milk that she was given into a specific amount of time. For instance, Ella is getting 76mL of fortified breast milk over 2 hours every 3 hours. It may not seem like a big deal, but it is! She was on continuous feedings before, so her tummy is starting to get to work like a normal person's. We will slowly work our way down to 76mL over 30 minutes.

God has been teaching me so much through all of the ups and downs we've gone through with Ella. I wanted to share with you a bit of a devotion that my mother-in-law sent to me recently. It explains exactly how I feel...

The detour you are on is actually the road.

What a horrifying thought.

When my plans go awry, I always want to believe that I have taken a temporary detour. Maybe it’s a long one, but I hope that the real road, the road where I can return to being happy and fulfilled, is up ahead. Maybe it’s just around the corner if I can simply hang on.

Trusting that something better lies ahead is important. It helps me persevere in the midst of suffering. It gives me hope.

Yet at the same time, my hope cannot be in changed circumstances. I have no guarantee that my situation will improve. The hope that will never disappoint me is rooted in the person of Jesus.

...

Should I earnestly ask God to change my circumstances? Should I draw near to Him in prayer, write down my requests, and regularly seek Him for the things in my life that I want to see changed? Godly things. Restoration. Healing. Return to active ministry.

Or do I recognize that I am on a different road? One that may not bring the healing and restoration that I would like, but rather a closeness to Jesus that I could not get any other way.

Yes. (I loved that part!)

God invites me to ask Him to change the things that I long to be different. To persevere. To trust that my prayers make a difference.

But at the same time, God bids me to accept where I am. To let Him meet me in the darkness. To find comfort in His presence.  

God calls me to do both. Every day. On every road.

The old road often seems like it was more relaxing and easy to drive. The new road can be bumpy and twisty, narrow with sharp curves. And I find myself longing for the ease of what I used to have.

But the new road has benefits too, perhaps not in ease but in seeing life differently. More introspectively. Really noticing everything rather than rushing forward, oblivious to my surroundings.

But regardless of what I gain, it’s a challenge to accept that the detour is now the new road.

Isn't that so well written??? It's so spot on with how I have felt through the past five months. I love it. God has been teaching me so much. My mom asked me one day if I would change the situation, I told her that I would change Ella's suffering, but I wouldn't change the growth I've seen in myself and my family. Ella has brought me to the feet of God on my knees with tears streaming down my face  and He has been there to pick me up and wipe my tears away. I have seen such amazing things happening here in the PICU and I will never be the same person I was before Ella entered our lives. I am so thankful for her and am so blessed and honored to be her mom.

Eli was able to go to preschool on Tuesday!!! He loved it. I am so thankful that I was able to take him. I am sad that I don't get to take him every time he goes, but I am thankful I was there the first time. I hope to be able to go home late on Monday nights every week and take him on Tuesdays.

I wanted to mention here (so I don't forget some day) how amazing he was on the night that Ella coded. He looked at me as I got the call and noticed that I was crying. He said to me, "Mommy, what's wrong? Are you crying?" I responded saying, "Yah buddy, Sister is really sick and we have to go see her." He said in his sweet little voice, "Oh Mommy, what happened?" I said, "Her heart rate dropped really low and we don't want that to happen." He said, "It's ok Mommy, she will be ok," and he reached out to hug me. I am constantly in awe of his amazing understanding of what's going on. I can see how God designed him to be a great big brother to Ella. He has helped us get through these trying times. Matt and Eli are on their way to the Economy Pest Control staff camping trip. We didn't tell Eli ahead of time about this trip because we never know what is going to happen with Ella, so once he found out this afternoon that he was going to go camping he was SO excited!

We are seriously overwhelmed by the generosity of Economy Pest Control. They have been such a HUGE blessing to our family from day 1. I am so thankful that Matt works there. They are doing a car wash to raise funds for our family on Oct. 6th and started putting up big banners to promote it around town. I love the photo of Ella that they chose to put on the posters. She looks so sassy and cute. You can tell by that photo that she's a little fighter!!! They are also setting up two more fundraisers that will happen later in the year.

Aren't they amazing?? I am so humbled by everyone's generosity that they've shown us.

Here are some photos from recently...

Check out that hair!!!

Ashley (our surgeon's assistant) loving on Ella.

Ella hasn't done very well with the IPV breathing treatments so they tried something else. This vest giggles her to help loosen up the gunk in her lungs. It's so weird looking. She looks like she's about to take off into space!

Eli's first day of preschool on Tuesday!

Wonderful big brother sleeping with Ella's blankets on the bed in the hospital room after we rushed down her when she coded on Saturday night. 💜

Love,
Jillian

Another Call... Another Code...

Hi everyone,

This week was overall a really good week. Thursday was the best day she's had in a while! The unit has been extremely busy and having Ella really stable on Thursday seemed to be a big help to the doctors. Each day has been really full with rounds, wound care, trach care, baths, etc.

On Friday afternoon I drove home! It was my first night sleeping in my bed since July 23rd. That was 46 days! Matt worked the next morning while Eli and I played at home. Then we went to pick up a car that we are borrowing from friends from church (thank you!) so that I could stay home with Eli and Matt could drive down to Sacramento to be with Ella. Funny story about that... Our pastor texted me the other day, checking in on us and asking if there was any thing we needed. I told him that the one car situation has been hard and we are waiting to get our old car (that broke down a while ago) in to get checked out. He texted and asked if we would like a loaner car. I got busy taking care of Ella and I didn't respond for a bit and the next time I checked my phone he had texted saying that he has a car for us to borrow! It's amazing how God has continually provided for us.

Saturday was a really good day for Ella too until that night. Matt left the hospital to get dinner around 8:15pm and I got a call at 8:40pm explaining that Ella had coded (meaning she had to receive CPR) and they were talking about putting her back on ECMO. What?! ECMO again?! My mind was racing. I had just gotten a picture from Matt of some beautiful numbers of her sats and heart rates/pressures. How could this have happened so fast?! I had just gotten Eli in bed and was starting to read him a book when I received the call. I called Matt as soon as I hung up and he didn't answer. I called again and he picked up to my voice shaking then I broke down crying. All of the guilt of not being there that day rushed over me and I was regretting my decision to stay home instead of going to the hospital. Saturday would've been the first day that I had not been to the hospital since the day before Ella was born five months ago... apparently Ella wasn't a big fan that she didn't see me that day and knew how to get me down to Sac. After telling Matt all that I knew, we hung up and I rushed to get Eli and I together to hit the road. I was really proud of myself for remembering everything that we needed (minus Eli's toothbrush). I loaded Eli and a couple of our things in the car and left. 

I got another call seven minutes later from the hospital. This time the nurse explained that they had to do compressions on Ella for only three minutes and she started to recover so they weren't considering ECMO anymore. Phew! A peace fell over me, but I knew I needed to get down to Sac to see that she was OK with my own eyes. I called our parents multiple times and updated them all. I also called our friends that live next to us and asked if they would check that I didn't leave any thing on; I wasn't sure what I did after I received the call, I even had to double check to make sure I put pants on Eli later on our drive!  😂

Eli and I got to the hospital around 9:45pm and Ella looked good. Poor Dr. Tran (the PICU doctor)... He has had to be the one to give her compressions at least 2 of her 3 codes. He explained that during a breathing treatment, her gag reflex was triggered causing her to bear down which changed the pressures in her heart which made her heart rate drastically drop along with her sats. They added a ton of pain and sedation meds to help calm her. We left after a while of visiting with Ella and went to sleep at the Ronald McDonald House. Around 4am, we got another call. This time it was the doctor asking for our consent to give Ella a central line in her upper left thigh so they would have access to her for blood gases and to run medications through it. We of course agreed and thanked God that that was all the doctor needed.

The sound of my phone ringing triggers a scared response now. I hate it when it rings... It's almost like a PTSD response because I have received so many bad phone calls recently. It's weird how things like the sound of a phone can trigger your emotions.

Sunday was another stressful day that consisted of extremely low oxygen saturation levels while on 100% oxygen. We were told that if Ella needed to go back on ECMO, the doctors didn't recommend putting her through it again because it wasn't likely to be successful. Ella's nurse and respiratory therapist were constantly on and having to pay really close attention to her. They were trying to figure out what was going on, but there was no real evidence as to why she was satting so low while on 100% oxygen. They tried everything. They even put her on another kind of ventilator to see if that would help, but nothing seemed to... Later in the afternoon we did another xray of Ella's chest and realized her left lung had collapsed. This was probably the source of the low saturation levels. The doctors and nurses gave her blood, put her back on a heart med called milrinone, and changed her trach to a cuffed trach (to remove the air leak that she had with a non-cuffed trach, which offered more pressure to keep her lungs filled with air). As we left, everyone was giving us hugs and to all of us in the PICU that night, it seemed like Ella wouldn't make it to the next morning. I posted on social media a call for prayer and it was amazing how many people were praying for our girl. Matt and I felt an amazing peace fall on us as we said goodbye to Ella. We aren't totally sure of what helped her or if it was a mix of it all, but Ella seemed to be doing much better. God gave us such an overwhelming peace so we were able to get rest last night.

I had multiple nurses texting me last night and this morning to check in on Ella. Can you believe that? They are so amazing and love her so much. It is truly a gift. As much as I can relay to you all, it's hard to really convey what actually goes on in Ella's room day by day, but these nurses and doctors get it. We are so blessed to have them in our lives. The relationships that we've built here would have never been built had Ella not been sick. I am so thankful that God has brought each and every one of them into our lives. 💜 They've been a light in the darkness.

We woke up and came to the hospital and were greeted by beautiful oxygen saturation levels and a lower level of oxygen support. We couldn't believe it. The doctors and nurses will be weaning her off of the sedation and pain meds and started feeding her again.

Talk about a stressful weekend. Poor little girl... She has really been through the ringer. She has defied all odds once again and the hospital staff can't believe it. God is sustaining her and she is making an impact on the world and glorifying Him.

Matt and I still can't believe she is here with us. We have had to say goodbye to our daughter without knowing if we will ever see her again so many times now. It's a feeling that I cannot describe. It's pretty horrible, yet God's plan for her continues!

I am taking Eli to his first day of preschool tomorrow! So I will be going home late tonight and coming back to the hospital in the afternoon. I get really anxious when I'm not down near Ella because she seems to always call me back, but I am praying and trusting that God will watch over her, and if she does call me back, that's ok. She knows we will be right there for her.

Thank you to everyone who prayed for her and for our family last night. It's not only hard on Matt, Eli, and me, it's hard on our parents and siblings. Please keep them in your prayers too.

Love,
Jillian

The Rolling Stones Had It Right

"You can't always get what you waaannttt..." is a part of the Rolling Stones song that we sing to Eli often. 😀 Whether it's to teach him that he doesn't get everything he wants or to defuse his frustration in desiring something really badly that he cannot have, that portion of the song is something that he hears relatively often. But this past weekend I've caught myself singing it in my head to remind me of it as well because I have desired things that I didn't get to have.

This weekend was supposed to be a long and fun weekend that Matt, Eli, Ella, and I would get to have together. On Friday, Matt and I picked up Eli ready to make the trek down to Sacramento for the weekend with fun adventures in store. Those plans that we made were quickly thwarted because Eli had caught a cold. Now this wouldn't normally feel unfair to me because I know kids get sick, but for it to happen on the only long weekend that we had as a family totally (for lack of better word) sucked. We had plans to hang together in the hospital and to go to a museum or a park to celebrate being together again but we couldn't. But this really wasn't the main thing that bothered me, this cold meant that we couldn't go see Ella and be a family of four for the weekend... Now-a-days I really look forward to the weekends because they often mean I get to see my husband and my son and we FINALLY get to be a whole family. Matt and I joke around saying that we thought that our 3 years of long distance during our dating days were enough for us, but here we are again! 😂 We got to enjoy Saturday with my brother-in-law and sister-in-law who came to visit. Eli was acting funny but I thought it was because he missed his nap. That night Eli had a really restless night's sleep and we knew something was up. We woke up to a snotty nose boy who refused to blow it, claiming he was "too little" to do so 😉. (If anyone has advice on how to teach him to blow his nose, holla at me) So we were stuck. We couldn't take Eli into Ella's room or even the hospital for fear that he would get Ella or someone else in critical condition sick. Thankfully my brother-in-law and sister-in-law offered to leave for their vacation late (THANK YOU TIM AND JULIE!!!) and watch Eli so Matt and I could get some time with our girl together.

After Tim and Julie left, we decided to take shifts. One with one sick boy and the other with one sick girl. 😷 I kept thinking, "Really God? Why couldn't I have just had this ONE holiday weekend?" And to be honest, I still wonder why Eli had to get sick, but I also realized the good that came from it. I can't tell you the last time that Eli and I got to snuggle and be together just the two of us and I missed it! We used to have endless days of adventuring and snuggling together but since Ella has been so sick and in the hospital, it's been a while. Matt also got to be with his girl without me to interrupt (although he'd say that I wasn't interrupting). So we took shifts with our kids and prayed that Ella wouldn't get Eli's cold.

Fast forward to today, Ella's oxygen sats have been really low and the need for extra oxygen had been really high. We couldn't totally figure out why so the nurse and respiratory therapists did everything they could think of to get them up... I flippantly mentioned how Eli was sick during rounds and the doctors told me that that could be the reason Ella's respiratory system is struggling... meaning, she probably has a cold too. Once again, if this was a normal situation, I'd think, "Well it was only a matter of time for the baby to get sick", but since our situation is far from normal (ha!) I couldn't help but have my mind race to how long Eli was around her. Did he touch her? Was he infected when he saw her? Did I not see the signs? I could replay all of these things over and over in my head, but then I realize that it doesn't really help the situation and just brings me guilt.

So Ella had a respiratory panel done today to check to see if she has an infection and we will know the results soon. I am praying that it passes quickly and doesn't set us back too much. Even with just a cold, Ella's condition could get really bad. So I am thankful that we are at the hospital already and that she can be monitored closely.

Ella has been so cute and kind of smiling! I look like such a goofball when I talk to her because I talk in a silly high voice and I am super animated in attempt to get her to smile at me. I got one real smile today. Tomorrow I'm going all out to get 2. 😁

The other thing that "I don't always get what I want" is that Eli won't get to go to his first day of preschool tomorrow. But, once again, after living through everything that I have in the last 5 months, my perspective has changed and I know it's not the end of the world and he won't remember it anyway. Haha!

Anyway... I think the Rolling Stones really had it right. We don't always get what we want. And that's ok. In most cases we get something else, and often it's better than our original desires. It's amazing how we think we know what we need or want, but God REALLY knows what we need and He blesses us so beyond what we ultimately deserve.

Love,
Jillian

Looking Good

Hi Everyone!!!

Ella has continued to progress slowly but surely! We haven't really had any set backs recently, which is amazing (and kind of unbelievable!). I have been able to help care for her more and more and I'm really enjoying it!

Ella is down to "half" a nurse. Her nurse has 2 patients and that shows us that she is less critical and is getting better. We have been seeing little signs of getting closer to discharge (and no, we haven't gotten any word of discharge yet)!

Ella has continued to show all of us what it is like to be a fighter. She has looked so good these last few days that no one would guess that she was on life support just a few weeks ago. She is tolerating all of her feedings. Before today she was getting food continuously through the g-tube in her tummy, but today we are going to what's called "bolus feedings" where she gets her food given from the food pump in a shorter amount of time with a break in between. When we were home last month she was getting 70mL of fortified milk (we add formula for higher caloric value) every three hours over a half hour, so we are working our way up to that now with an even higher amount.

Doesn't she look amazing? Such a beautiful girl.

The nutrition has been so key in Ella's head wound healing, it's getting a lot better. After being on ECMO (life support), Ella's head wound opened up, but it wasn't as bad as it was before. I have been the primary caretaker of her wound and now have a new job with some that developed on her chest from the different wires and tubes that were in it. Not going to lie, the chest grosses me out WAY more than the head. It's pretty amazing how I have changed in this regard as well. Before Ella, stitches would send shivers down my spine, but since having her I have been able to handle a lot more than stitches! The wounds on her chest are pretty ugly looking. One is even (sorry for the imagery here...) tunneling under the skin and connecting to another one and they are pretty deep. After watching the care that these wounds need, the wound nurse told our PICU nurse, "Mom knows how to do it", so now I am in charge of it, eek! I love it when they have confidence in my ability to help care for my girl. I still have yet to push the Q-tip through the tunnel, under the bridge of skin, to clean it out--thankfully Ashley did it for me yesterday. That is the part that freaks me out. Tomorrow will be the first time that I do it though. Should be interesting! HA! 😝

The leak in Ella's aortic valve has seemed to go down a tiny bit! So that's exciting! The doctors say it's probably because they started a new med for her heart, which may be true, but I know it's really because God is helping it!!! Keep praying for that leak to subside!

Ella is still on the ventilator but has been doing sprints on CPAP pressure support. Each of these sprints (or more like strolls, as I was told by another doc) has seemed to have been pretty easy on her. We continue to pray for her to get off the vent quickly and build up the strength and stamina needed to get her home without one!

One unfortunate piece of news is that we will always have to be in isolation precautions for any of the future hospital stays. The bacteria that she contracted in her chest (not the one brought in by another patient) is one that they make the families always dress down for, for the rest of their lives. Bleh... but it could be worse! And this way, Ella will actually be more protected from outside bugs getting to her. So oh well, it's annoying, but definitely the least of our worries!

In other news, Eli has continued to be a trooper through all of this. He is such a big boy now. He has grown a lot from all that has happened these last five months. He's even going to preschool on Tuesday!!! He is really excited and so am I. I know he's going to love it. I get to spend the first day of preschool with him, so that will be really fun.

I cannot believe that it is September already. Where have these last 5 months gone?? I guess they've been in a hospital room for me! It has been weird not going back to my "normal life" and teaching, but I honestly couldn't imagine not being in the hospital room with Ella at this point. I think it's gotten to the point now that it will be weirder when we get to actually be home. Last Sunday I took Eli and Matt back to Grass Valley and it was the first time that I felt really homesick. I feel like I've been able to just go with the flow for the most part since Ella was born, but for some reason Sunday was really hard to leave. It was just a sweet, though short, time at home... I spent time with Matt, gave Eli a bath, sat outside in my garden, saw my friend Kristen and her son, the air felt crisp like it does when Fall is close, and it just felt so good to be in our house. So I reluctantly drove back to Sacramento. It's not that I didn't want to see Ella or anything like that, it was just that I remembered what it was like being in my own home and the joy that it brings me. After I arrived at the hospital I spent time with Ella and knew immediately that this is where I belong right now. God has been so good at helping me to be content in my circumstances these last few months and I have learned so much about Him, myself, and life in general that I would never have experienced without being here.

Hope all is well in the outside world! 😊

Love,
Jillian