Being a Nurse Rather Than a Mom

Hi all!

I said I was going to update you all on how Matt and I are feeling so here it is! I know more about how I am than he is so the post will be a little more about my side...

This last week has been HARD. The annoyance of the ventilator has really caught up to me and I have just had a rough go for a few days now. It almost feels like there is no light at the end of the tunnel.

The only way I can think to describe it is that I am tired of having to be a nurse rather than a mom. 

I have felt so robbed this week of all of the "normal mom" duties or pleasures. For some reason Ella has been super irritated the last few days and can't seem to get past the hump of sprinting for 3-4 hours. So her sprints have now become really stressful rather than something that we are excited about. The alarm is constantly blaring at us letting us know that her respiratory rate is high, which we already know... (She's just a fast breather, always has been and the docs were never worried about it, but the highest rate that we can set the alarm to isn't high enough for our little Ella girl) And the pulse oximeter alarm blares at us because it has a hard time picking up her readings, which is never a good thing when you are pushing her body to do hard things and need those readings to decide whether or not she can pass the sprint or if we should bail early. We've had to skip or cut the last few before the goal time. It's super discouraging. My "lofty" (as said by the pulmonologist) goal was to get her off the vent by Christmas so I could play with her and walk her around without being tethered to something. But that goal seems very unattainable at this point. It's hard for me to accept that my goal was just too far fetched. I think I just wanted Christmas morning to be more normal like all of our other Christmases, but I am learning that I need to be patient and flexible and to accept that things aren't always going to go the way that I want. I thought that I was done learning patience, but apparently God isn't quite satisfied with my progress HA! 😃

We aren't sure if Ella is getting sick or something, but I have had to guess and implement different things to keep her oxygen saturations where they need to be during her last two sprints. We have had to use oxygen the last couple of times to keep them up, but even that hasn't really worked. We even skipped last night's sprint to give her a little rest to see if that would help, but it didn't really... So I used all the knowledge that I learned in the hospital to help troubleshoot the low sats and, thankfully, she was able to make it to the four hour mark today. I am hoping she will be able to do it twice today like we have planned. I did everything I could think of... the procussion vest to help get all the gunk out of her lungs, suctioning more often, repositioning, and finally adding another dose of Albuterol to help open her airways. It was a lot. And I was on edge for a solid two hours just hoping that she could make it through the four hours so we didn't have to cut it short. She seemed super irritated the last couple of hours of her sprint and would cry a lot of it. I think she may be teething to top it all off because one of the top front teeth is just about to break through. Poor little girl...  In the midst of all of that, the three of us needed to eat lunch, feed Ella, and give her a water flush and four medications. It's exhausting! See what I mean when I say that I feel more like a nurse than a mom? I'm just hoping that it will all be worth it soon and the ventilator will be a thing of the past.

The last few days I have been clinging to the verse that I clung to when we found out about Ella's heart...  Psalm 13: 2-4 "How long must I struggle with anguish in my soul, with sorrow in my heart every day? How long will my enemy have the upper hand? Turn and answer me, O Lord my God! Restore the sparkle to my eyes..." How long can this really last? How long do we have to have Ella on the ventilator? Lots of questions like these have been flooding my heart this week. I don't feel like I have received an answer from God at this point, and that's ok. Thankfully, especially during the Christmas season, I am reminded of His love for me and that my biggest problem, my salvation and eternal life, is completely taken care of because of Jesus. I am thankful that even though God already knows the hurt in my heart, I can go to Him and wrestle with Him about it. 

Now on to Matt... He has been doing pretty well overall but feels the same feelings of disappointment with the trach and ventilator. A couple nights ago I just couldn't shake my discouragement and he was there to listen and grieve with me. He's so much better at handling things than me. I tend to let my emotions wear me down, but he's good at pushing those thoughts out of his head and moving on. I wonder if that's a male/female thing 😊. Work has been going well for him, but the weather has definitely added a little stress because when it rains he's not able to do his route so it puts him behind. If you know Matt, you know he LOVES Christmas lights and putting them up. We finally put them up this week and they have brought a lot of joy to us. Watching Eli get so excited about them coming on each night is so cute. 

Love,
Jillian

It's the Holiday Season

Happy December Everyone!

We have officially been home more than TWO MONTHS! Yay!

It has been really busy with doctor appointments, Thanksgiving, and now Christmas festivities. The week before Thanksgiving we had four doctor appointments, which I wrote the last blog post after. The week of Thanksgiving we didn't have any. And last week we had four appointments again. Ella has been showing a lot of progress so we won't have as many appointments soon!

The week of Thanksgiving was really exhausting because we were on night duty for four of six nights, but we made it! Thanksgiving was a fun day, but we definitely downsized our normal activities. We normally go to the Turkey Trot in the morning then we go to Matt's family's dinner then to my family's dinner. This year, my parents and brother stopped by our house in the afternoon then we packed up Ella and all of her equipment and headed to Matt's family's home (which is only about a half of a mile away). It was nice to be able to go out together as a family of four! It definitely took a lot of preparation but it was good!

We were so exhausted that weekend so it was filled with lots of snuggles and movies.

Me and my babies!

Ella Warrior Princess! Check out those war wounds! Tough girl! That little thing on her tummy is her feeding tube (G-tube)

Our usual nurse has been attending an intensive class so last week we had a new nurse and she had to jump right in with four doctor appointments! Last Monday we had a neurology appointment which went really well! Her neurologist seemed pleased with her progress and noticed advances that she's made that I hadn't even noticed! The main thing that was impacted by the stroke that she had back in September was her right hand. Her right foot and leg move almost as much as the left and her mental capabilities (as of right now) seem pretty good! Like I've said before, because Ella was in the hospital for so long, she is behind physically and mentally. But she has shown great improvement over the last couple of weeks! She is really smiley (especially when she sees Matt) and interacts a lot more with us and with toys. She is also starting to show a little more sass as well. 😆 She kicks her legs in ways that express her emotions. We can definitely tell whether it is a kick out of happiness or being upset. She also swats her hands and arms at us when she doesn't like something we are doing to her. I always laugh when she does that when I'm kissing her.

The next appointment was with Ella's cardiologist, Dr. Hill. He said that the leak in her aortic valve is back to being moderate from mild/moderate. This doesn't totally surprise me, but it's still a bummer. She is still gaining weight and her oxygen saturations are good so we are hoping to hold off the next surgery (which will be the Fontan--the 3rd surgery for normal hypoplastics) until next Fall. A lot of you have been asking about when her next surgery will be and the answer is... We don't know. She has a lot of growing to do before that surgery so we are praying that we won't have to go back into the hospital before Fall. This will be made possible if she doesn't catch a cold/any illness or if there aren't any major changes. If her oxygen saturations drop consistently, we will have to go in and either do another heart cath or she may have to have another open heart surgery to place a larger shunt that allows blood flow to her lungs. So there are many different possible outcomes with our Ella girl, but ideally she would grow and receive the Fontan sometime next year. I am under the impression that if we can put the surgery off even longer we will so she can be that much bigger and stronger. The scary thing about hypoplastics is that you just never know. They may be doing well one moment and the next... not-so-much. Ella has been a great example of the many things that "could go wrong" but she has also been an amazing example of what God can do. The fact that she is still with us and doing well is pretty incredible. The more that we get to know her and get to be home with her, the more I start to get scared that we will lose her. In the hospital there's almost a barrier that allows you to not get as attached, but we are well past that and I cannot imagine life without her now.

Friday we had a consult for the wound on the back of her head... Yes, that's still an issue... There is still a small hole that is open on the back of her head that I thought would be gone by now. We went to the Pediatric Day Unit at the hospital to get it checked out. I was able to swing by the PICU before Ella's appointment and drop off goodies for my friend whose daughter had her surgery in November. She wasn't there, but I was able to see little Brookie and she looked so good!! It was also fun to see the staff again! After we visited for a while, we got to Ella's appointment and were told it may never fully close, but we are putting a styrofoam-type collagen in the hole in hopes that it will close with that. If not, Ella's lucky she's a girl and her hair will cover it! 😉 We then went to her outpatient heart team appointment. We are still trying to figure out her nutrition, because as you will see in the photos below, she's a chunk-a-munk! We have taken her caloric intake down to see if that will be a good spot for her. Ella is still throwing up and still has blood in her poo so we are trying to rule out everything possible before taking her to get a scope done since that will have to involve anesthesia.

We have been sprinting Ella off of the ventilator and are up to two 3 hour sprints a day! This process is seriously at a snail's pace, but I don't know why I would expect anything else with our little one! She definitely seems a lot stronger in her sprints which makes me really hopeful!

Saturday, ALL FOUR OF US and Matt's parents went and got our Christmas tree! It was so fun! It took about 15 minutes just to get us all out of the car and ready to go with Ella in the front pack. This was her first time doing this and she wasn't much of a fan so we quickly snapped our Christmas photos and put her back in her carseat. You can tell in the photos that she got pretty blue while in the pack, but it was kind of sweet getting to hold her like I used to hold Eli. Check out all of the gear I wore to get her "mobile" around the tree farm. The cute little hedgehog backpack holds her food pump and milk and the long tubing and the square machine is her travel ventilator. I was packing on an extra 30+ pounds walking around with her! It was a good work out! 😊

Ella was super stoked to be in the pack... 😉

Ella in her stroller with all of her accessories

Eli doing his thing and climbing trees

I love this photo, but it's funny because we've talked about how much rounder her face looks in it, but doesn't she look so sweet?

Our biggest tree yet! 

Snuggling with her blankets

How Daddy has her snuggle up

He loves any kind of climbing now a days!

Ella watching us as we decorate the tree

Anyway, there's a lot more to say about how we are feeling about everything, but that'll have to come in a later post. We don't have night nurses on Sunday or Monday nights still, so I need to get going. And plus, I have a little boy that should be asleep next to me!

Love,
Jillian

Four Appointments

Hi everyone!

Been wanting to write for a while but decided to wait until after we went to our FOUR doctor appointments this week...

Monday we had an appointment with Ella's ENT (Ears Nose Throat) doctor to check the size of Ella's trach. He decided to have Ella go back to the smaller, neo size rather than what's she's been using, the pediatric size, because she has been gagging and it has seemed to bother her. I hope it helps! Ella gags a lot and I'm curious if her vomiting (yes, that's still happening--just not as much😞) has been because of that. The other reason it could be is because she's not very good at swallowing since she hasn't ever eaten by mouth, so when her saliva builds up in her mouth, it sometimes gags her. We should be receiving those soon, so that'll be good!

Tuesday we had a day off from the doctors, so I took Eli to preschool, ran a couple of errands, then took him to get his hair cut for picture day on Thursday. He looks like such a big boy! I can't believe how fast he's growing up. He has gotten a lot more used to our new normal, has been adjusting a lot better, and has shown more interest in Ella. He really wants her to be able to play with him now.

Wednesday we had an appointment for Ella's immunizations. She hasn't been able to have them until recently because they wanted her body to be more stable. Our pediatrician has been really great and supportive. He didn't want Ella exposed to anything in the office so he had his assistant come to our car to do it. Isn't that so wonderful?! I am so thankful for all of the people that have helped keep our girl well.

Thursday was our big appointment... The pulmonologist appointment. We were able to meet up with Ella's actual pulmonologist for the first time since July because she was on maternity leave. I walked away feeling pretty disappointed and defeated. She explained that my goal of getting Ella off the ventilator by Christmas was a lofty goal and she didn't even want to try... The ventilator has really put stress on us because it is so cumbersome. The only good thing about it is that it gives us a sense of security because it gives Ella a breath when she needs one. Ella is breathing on her own most of the time, but when she's really sleepy she will some times not breathe at the rate that it wants her to so it'll kick in. It's like she's going apnic (stops breathing). If this sleep apnea continues, she will have to keep the trach and the ventilator... I cannot imagine having the trach for more than a year more. It seems very daunting just thinking of another 6 months or so with it. We started doing sprints of time where she is just getting a pressure support, like a CPAP machine. We started with one 30 min trial, moved to two 30 min trials, then two 45 min ones and will continue to do it until she is on the pressure support setting at all times while she is awake. We wish we would've continued doing this from when we left the hospital so that she wouldn't have gotten so dependent on the vent, but we weren't confident enough handling the ventilator, so here we are! It's kind of like we are starting all over again... We were up to two 4 hour sprints when we left back in October. So far Ella has done pretty well with them!

I was pretty upset about this appointment... Everyone seems to tiptoe around Ella because it's like they're afraid of her (which rightly so, I guess 😃). I want to challenge her and get her off of this machine so that we can be more flexible with where we take her, even just around our house, and so that her motor development can really start. Matt reminded me that Ella has told us what she wants from the get go and she may surprise us again! Like when she was supposed to have a pace maker but then her heart kicked it into gear, the first time we left in June we were told we'd have a ventilator with us but Ella told us otherwise, and when she told us she was done with the oxygen back in October. Ella does what she wants... or at least that's what we say, but we know God is ultimately in control.

Friday we had another appointment with the outpatient cardiac team, but it was cancelled due to the air quality, so we did an appointment over the phone. Ella has been gaining weight like CrAzY so we are going to be taking down the calories in her formula... Oh yah, side note, we suspect the blood in her poo was due to a food allergy of some sort. We took away the breastmilk for a little over a week and it went away, along with the horrible diaper rash, but it's so hard to say what food she's allergic to since it was milk that I froze back at the end of May. Back to the appointment!... We are going to be adding a protein powder to her milk because lowering the calories would also be lowering the protein content, so we are waiting on the protein to get here to change her formula. She is such a cute little chunk!

Recently I have really struggled emotionally. I am still trying to accept what our lives are like right now and that they will be that way for at least another year. I miss being able to just get up and go out with my kids. I miss having date nights with my husband. I miss sleeping hahaha! But I know this should all pass relatively soon, I'm just struggling to accept it for now, but I will get there!

We visited the PICU last week which was really fun. We were there to say hi to our friend who's daughter just had her heart surgery. It was nice to see everyone and show off how well Ella's been doing. Everyone was so sweet and was excited to see Ella, Eli, my mom and I. One of the surgeons said that when he heard that we were there he got nervous and asked, "What happened?!" but once he found out we were just visiting he was happy to see us! The other surgeon asked about her sats, calories, and was checking in on how she's doing overall. We are so blessed to have all of them in our lives! During that same trip we had Ella's cardiologist appointment and Eli's as well. We switched him to have Dr. Hill so he and Ella would have the same doctor. Eli's VSD (hole in his ventricular septum) is still large, but has a flap over it so it's acting like a small one. There's still a chance that he would need heart surgery at some point in his life, but as for now, we continue to get him an echocardiogram each year and watch it.

Hope all is well with you all! We are so thankful for the continued support that you all show us. We are thankful for all of the prayers, financial support and meals you've given us. We are so blessed. We don't know what we'd do without all of you.

Finally getting more comfortable with Ella's trach and vent to the point where I put her laying on my chest. It's tricky but so worth the snuggles!

Eli playing with his buddy Trey in our laundry basket.

First ponytail!

Eli doing such a good job while getting his echo.

This is what happens when you have a brother... he puts marbles in your belly button.

Ella has been getting good at holding her head up! The machine behind her is the ventilator.

First little pigtails! AAAHHH I may do her hair like this all of the time from now on. It's so so cute!

Love,
Jillian

Home Almost ONE MONTH!

Man oh man! Where do I start?! I haven't been blogging because it has been absolutely insane around here. And I've been so tired that this has taken a bit of a backseat. But thank you all for continuing to think of us and pray for us. We've been VERY busy, but mostly good busy!

Ella had a cardiologist appointment last week and it went really well. Dr. Hill said that her heart function looks great and that the aortic valve leak looks about the same, possibly a teeny bit better. So yippee!!! I was really nervous to go to this appointment because the other cardiologist appointments have lead to Ella going back into the hospital, but not this one! It was really fun to see the cardiologists again! They've become like our family! Dr. Hill talked about the amazing things that are happening for the cardiac kids. There will be crazy advancements coming in the next 10-15 years. I pray that Ella will get to be a part of them! We have another cardiologist appointment next Friday and that one will be for BOTH of my kids. We switched Eli to have Dr. Hill too so he will get his annual echocardiogram to check on his VSD (hole in the ventricular septum). Our previous doctor thought that he most likely won't need surgery on it, but we shall see what it looks like this year. I hope he just outgrows it and doesn't need surgery. But if he does, we know he will be in good hands and we are kind of getting used to heart surgeries around here!

We also have had a couple of other appointments. Ella had an outpatient check-in appointment every other week (it switches between them and the cardiologist appointments). These consist of checking in with her oxygen saturation levels and her weight and they just monitor her overall growth/development. Ella has been growing really well and we have even taken down the amount of calories that we fortify the breast milk with. Her cheeks are so round and cute and she has baby rolls all over! My guess is that we will take down her calories again because she has consistently gained weight each day and it's a little more than what our goal is.

We also went to the pulmonologist appointment last Friday and I was so proud of Matt and I! We were able to get out of the house by 6:20am!!! Our appointment was at 7:30 and we were even early! Not much was accomplished... We got a referral for a sleep study (which is a step toward getting the trach out) and that's about it. We were hoping they would help us to know how to wean Ella off the ventilator, but our normal doctor has been out of the office on maternity leave so the doctor that was filling in didn't feel super comfortable since Ella is so fragile. We see our normal pulmonologist on the 15th of this month. I hope we can start the process of getting this girl off that ventilator! It will be so much easier for her (and us!) to move around without it.

Since the appointment with Dr. Hill on October 24th, Ella has been off oxygen support!!! We are so so excited about this! We've had to turn on the oxygen concentrator a couple of times, but only for a few minutes to get her sats back up, but she gets off shortly after. We've joked around saying that Ella just needed to see her echo and hear Dr. Hill say that her heart is "good" (for a hypo-plastic) so she felt like she didn't need it anymore. HA! I have been asking God for Him to take away something, whether it be the vent or the oxygen. And here we are! I can now move her a little easier because she isn't hooked up to two machines! I am able to hold her with one arm and push the ventilator with the other.

We had our initial physical/occupational therapy assessment today and Ella is showing signs of being like a 2-3 month old. That was what Matt and I have observed and said, but to have someone else tell me that our 7 month old has the development of a 2-3 month old was a little hard to hear. I have told Matt that because we didn't get to really experience Ella's newborn phase when she was tiny, we get to experience it now. 😊 Our nurse told me that she knows Ella will get up to where she needs to be, we just need to give it time. She was really sweet and reassured me that it will get better. We will likely have an occupation/physical therapist come out within the next two weeks and we will start getting this girl moving and developing!

Ella has continued to throw up unfortunately... We have slowed down her feeding time to eating 80mL over 2 hours, which has helped! But it's kind of a pain because she's hooked up to the feeding tubes and pump most of the day now. We only get an hour of her not being hooked up between each feeding time. We were down to 1.5 hours and that was a lot more manageable, which I know sounds funny, but the extra half hour was great! So hopefully we will get her back down. The other weird tummy thing that has just come up is that we have found blood in her poo... I have been on the phone with the GI doctor a couple of times today and we can't quite figure out what's going on. Her tummy is still squishy and she doesn't seem irritated like she was with her ulcer bleed, so we aren't sure what's up! There are no other signs that would help us figure out what's going on, so please pray that it will solve itself or that we can figure out what it is. We went and got blood work done today just to make sure she isn't anemic. We won't have the results for a little while.

Matt and I did our best trach change yet on Tuesday! The trach change is done once a week and it's where Matt and I have to pull the old one out and put in a clean, new one. It's always a little nerve wracking because we are essentially taking away her way of breathing, and not to mention we are pulling out and putting in a weird thing into a tiny hole in her neck! 😳 Pretty crazy! But we were just spot on this last time and worked well together and Ella didn't seem as irritated, overall it was a really good one! We still have to do the trach TIE changes every day, which involves taking off the ties around her neck that hold the trach in, one person holds the trach in (which can be tricky when she moves her head around) while the other does the washing around it, puts a powder on it, puts a new split gauze under the trach, and puts on fresh ties. Ella hates doing anything like this and I'm pretty sure we hate it almost as much! Hopefully this will only be for a little while longer.

Ella has two new teeth! Her top right and the one to the right of that one! It's so cute!!! Oh, and also, remember when I thought she has 3 bottom teeth? Yah... one is just a giant one with a little ridge in it so when it was coming through it looked like two separate ones, but it was just one big one!

Getting used to our new life has been really difficult. Matt and I are pretty exhausted emotionally and physically. We are SO thankful Ella is home, but it's a lot. It's been hard on us all. We are still adjusting, heck we've only been home ONE MONTH (as of tomorrow). I just wish it would somehow get easier, but maybe that's not what God has in store for us right now. One day last week, my friend came over and we just talked. It was so nice to talk about my life and about her life and not have it all about the medical side of Ella. It was finally a normal, but deep conversation like we used to have all of the time. I told her how it's been hard not to resent our situation and what God has asked of us and our kids. If you were to tell us that our lives would be like this one year ago when we announced that we were pregnant, we wouldn't believe you. This year has been the hardest, most painful year I have ever experienced, and yet, it has also been a beautiful year. It's amazing to look back at how far we have come. Some days I see the beauty and some days I can't see past the pain, but I know that God has been with me every step of the way. I told my friend about a bible study that I was looking into to help me get through these next few weeks and she and a couple of people from her life-group bought it for me that night! I started it on Monday. It's about thankfulness. I figured that if I focused on being thankful rather than looking at all of the crap that we have had to deal with, I would feel more joyful and would be able to focus on the good more. It has definitely helped, but honestly, some days are just a little tough to get to that point.

Eli and I went to the downtown trick or treating event on Halloween and it was really fun. After I got home, I got really sad though. I wished I could've experienced it with BOTH of my kids like the other families around me got to. It was really hard to not have my cute little unicorn with me and my tough dump truck. 😁 My friend mentioned that it's like I'm living two lives: one with Ella at home or the hospital and one with Eli out and about doing what we used to do while Ella's at home with our nurse (who I am so thankful for!). This really resonated with me because I haven't really been able to put it into words how I was feeling and that was just it, I was feeling like I am living two lives.

I am so thankful to still be home with our little Ella girl and Eli baby. Our family has been able to be together for the last month and I am looking to much more!

Ella with her favorite cardiologist!

Working on the head control!

One of Matt's coworkers gave Eli some money after he got his flu shot so we got some goldfish! Meet Goldie and Peaches!

Eli snuggling with Ella in her bed one morning

Daddy reading to the kids as Ella falls asleep getting a breathing treatment

Sorry for the delay in information, but like people say, no news is good news usually!

Love,
Jillian

In the Swing of Things!

Hi!

Just realized that I haven't blogged in 9 days!!! So sorry everyone, but things are busy busy busy around here! Both kiddos are asleep right now so I have some time to catch you all up!

We have officially been home two weeks!!! Yippee! We are breaking records over here!

Ella has been doing really well overall! She is a lot more alert and is starting to reach out and touch toys. She loves reading with us and looking around the house. Ella has even been able to be completely off oxygen support a few times for hours at a time! She was off for over 13 hours earlier and even now she barely needs any. 🙌We have even ventured out of the house other than when we go to her doctor appointments! We even went to my parents' house today to sit and play in their backyard. Eli was so happy and Ella just hung out on the lounger. It was great!

Here's a fun little peek into our lives...😊 Some of you may have caught my instagram story about how crazy it was yesterday just to go for a little walk around our circle. It was NUTS! I thought it would be fun to go for a walk but (stupidly) didn't get ready for it until about an hour before our nurse was off. So we got all of Ella's gear packed up and Eli was so excited to go for a "dizzy walk" (he calls it that because we just go around and around in a circle). The walk was so great and got us out of the house, but after we got back, I realized Eli needed a nap and the nurse was off. I gave him a snack and during the few minutes I wasn't paying attention to him, he decided to go outside and push our stroller into the garden and flip it over. Fun times. This was after he had pulled down the lamp in his room earlier in the day. He's kind of been doing this "I need attention, so I'll do something to get it, even if it's negative attention" thing. Not my fave. HA! While he ate a snack we noticed some deer outside so Eli watched them through the back windows then I realized, "OH NO! I forgot to spray my plants with deer repellent near the front door," so I opened the door and there was Bambi munching away. I startled him/her and he/she kicked over a pot on the ground, pushed over a little bike plant stand along with a pot and ran away. So my list of things to take care of when Eli was asleep grew a little longer. Anyway, so after all of this, we had to go upstairs to get Eli down for a nap. I hadn't taken Ella off of her travel ventilator so I packed her, and all of her 5 bags, up the stairs and all three of us sat in Eli's rocker and read books. It was weird almost feeling like we were a "normal" two-kid family. After I got Eli to sleep, I trekked Ella and all of her bags down the stairs and made the transfer over to her home ventilator and hooked her up to the oxygen concentrator rather than the tank. As soon as I did this, I realized a did a medical-mom FAIL. I had totally forgotten to turn the oxygen tank ON!!! AH! So Ella was without it for over an hour. I totally freaked out. I couldn't believe that I did that! I got her pulse ox on quickly and checked her oxygen sat levels and she was still within her parameters. God totally protected us! The amount of things that I have to remember with her is pretty mental. I am so thankful that God has protected her from my mistakes I've made with her medical stuff. So that's just ONE of the many stories of our happenings. Haha!

Later in the evening, Matt and I had to do Ella's trach change. Now this is probably the worst part about having a trached kid. We have to take out the old trach and put in a new one... every... week. It is soooo stressful. We are taking her airway away from her for a few seconds and she definitely does not enjoy it. During these times, we don't know how to distract Eli so we just play a movie or show and he zones out. I HATE IT. If any of you have some ideas as to what I can have him do while we have to give Ella our undivided attention, holla at me! And, yes, I've tried art projects or crafts and that lasts about 5 minutes then he's over it...

Monday we got our more permanent nurse who had spent two nights with Ella during our second stay at home back in July, so she kind of knew what Ella has been through and such. So far it's been really good. She is super on top of things and I never have to remind her of a med or a feeding time. So that's been a HUGE help. She is really confident with the trach and vent stuff too which is a big relief. I am still trying to figure out my role though. Sometimes I just feel like I'm in the way and I know that's not her intention AT ALL, but it's just a little weird. I'll get used to it though! We have also had a night nurse since Saturday night and had another one two nights last week. Matt and I can't believe what different people we are with sleep! 😁

I have been able to get a lot more organized with Ella's medical supplies so that's been great and since we've done a couple of outings the time that it takes to prep for leaving has taken a lot less time too! I think we are finally getting into the swing of things! We have a HOME (High Risk Outpatient Monitoring & Education) appointment on Friday so hopefully Ella doesn't throw a curveball and get us out of the swing!

We could really use prayer in having patience with Eli. He has been so strong through this whole process but is starting to get annoyed with Ella and the attention that is directed at her now. It has made me so sad because he doesn't seem to want anything to do with her. We encourage him to go and play with her or sing or whatever, but he's not interested like he used to be. Praying it's just a phase!

Also! Ella has still had tummy issues. She's thrown up all of her crucial meds a couple times now and it's scary! So please continue to pray for that! And lastly please pray for Ella's right side. We've definitely noticed a big difference in it's ability since the stroke. Her hand rarely grips things and her arm and leg move less than the left side. She has also stopped smiling... 😞 She has smiled a few times, but it's rare.

We are all getting a lot more comfortable with Ella's trach and the hook ups and are really getting into a groove now. YAY!

Once again, thank you for praying for us, bringing us meals, and reaching out to us!

Love,
Jillian

Amazed

Hi everyone!

The last couple days have gone pretty well, Ella is enjoying her "vacation home". We are definitely learning how to take care of Ella in a more efficient way and things are taking us less time as the days go on. We are starting to memorize all 33 doses of medications that she's receiving throughout the day (😮) and her feeding schedule as well. We still have not had night nursing, so we are learning how to run off of 4-ish hours of sleep while juggling Eli and Ella during the day too. Thank goodness Matt has weekends off!!! Our parents have also been helping out a ton and we couldn't do it without them.

Saturday was the big car wash!!! We decided we should stop by and time it to see how long it takes us to get out of the door so we will know how to prepare for Ella's cardiologist appointment on Tuesday. We got ourselves and both kids clothed before we started the process and it still took us an HOUR. So I will have to start packing up by 7 on Tuesday to get us to Sacramento in time for her 10:00 appointment! Isn't that crazy! Just switching and packing up all of Ella's equipment takes a long time. Eli was being a bit difficult before we left and not 10 minutes into the drive he fell asleep. We knew he was tired! Once we got to the car wash Matt and I looked at each other and said, "I can't believe this is all for our baby girl." We were (and still are!) seriously overwhelmed by the generosity of our community and all of the work that Economy Pest Control (Matt's work) put into making it such a success. We sat in the car while Eli slept and people were able to meet Ella! (P.S. I'm sorry to those of you who we missed!!!) It was perfect because she was in her carseat and people just hung out by her window to say hi so there wasn't much risk in exposing her to so many people. She just watched everyone as they came by to say hi to her. Matt told me that Ella is probably the most famous person we will ever meet! HAHA! 💜 Eli slept for a while longer then woke up and was so excited to see everyone there. He and Matt got out of the car to go talk with people and try to pitch in with cleaning people's cars. We couldn't believe at the turn out. We are so blessed to live in this community where people really do care about others, even if they don't know them.

Once we left, I told Matt that seeing everyone and getting out of the house for a while filled me up! I felt so happy. We got home to my mom rearranging our house to make our couch from the living room fit in Ella's room so we won't have to sleep on the floor anymore. She gifted her (amazing) couch to us for our living room and it has made such a difference for us!!!

Matt read to Eli and Ella for a long time this morning on the floor in Ella's room while I cleaned a bit of our house. It was so so cute. He's such an amazing dad. I cannot imagine going through all of this without him.

How cute are they??

Tomorrow (Monday) Matt goes to work and today I got a text saying that our nurse is sick so I am on my own! Thankfully, my mom is coming during the C-R-A-Z-Y time in the morning before she goes to work  and our cousins are taking Eli to Apple Hill for the day, so I think I will be able to handle it! It's the time between the 8 and 9 o'clock hours that are really tough for us because Ella has 11 different meds that she gets, 3 of which are through a nebulizer, as breathing treatments for her lungs, which take a total of about 40 or so minutes to do. But after that, her afternoon is pretty smooth sailing with only 5 meds due until 5pm. So I think I can handle it.

The parade that we have to do is pretty comical just to move Ella from her room into the living room. It's about 15-20 steps away and you'd think we had to prepare for a 5K or something! First, we have to disconnect her from a few things then move some of her equipment into the living room. After all of that, we are able to carry her into the other room, but it takes at least TWO people. One carries the baby, one drags the oxygen concentrator and the ventilator alongside the other. We have to make sure that we go together or Ella's trach gets pulled on. It is quite the production!!!

Ella's throwing up has subsided a little. I think it has gotten better since removing the MCT oil from her diet and from all of your prayers!!!

Thank you to everyone who has or is bringing us meals! It has been a HUGE blessing!!!

Thank you to everyone who came out to the car wash and to everyone who planned it and worked it!!!

Thank you for all of your prayers!

See photos below!

Love,
Jillian

Eli playing with his little sister

Look at how huge she is!

Hi, my name is Ella and I'm really cute.

At the car wash checking people out. We have yet to work on the smiling since the stroke.

Thanks for the sweet picture Gail!

If any of you have photos from the car wash, please send them my way!!!

Chunk-a-Munk

Hi everyone!

Today was a much better day than yesterday! I started to feel more settled and Ella girl was wide awake for most of the day. I used to be a little concerned while she was in the hospital because she slept so much, but I think it was because she was a mix of healing and not having anything else to do. We had three nurses in our home with her today. Two were training with the other to get a better feel for what Ella's care looks like. I guess I should rewind a little and explain that we weren't able to get the nurses that we had prior to our last hospital stay (one changed careers and the other got a new patient). The new nurses studied her like crazy checking out the schedule I made, the significant dates of things that have happened in her life, and any other medical settings or needs. It was so cool seeing them take such an interest in her. So today Ella was well loved on and got a lot of attention. I was able to follow her med and feeding schedule to a T! It helped relieve a lot of stress. Matt and I both hate it when we aren't on time with things because it ends up delaying other things, so today we were spot on! It was nice not to have that added stress, we just followed the schedule and things went smoothly!

It's been fun to see how Ella has been so alert and awake, observing her new environment. I feel like she is going to make leaps and bounds in development no matter how long we get to stay home this time. We are hoping to help her with her right side's development specifically since it was affected by the stroke.

Eli went to preschool and took a nap at Grandma and Grandpa's today so I was able to settle into our house a little more with the help of my mom. I never did take that nap that I wrote about! I felt fine most of the day, so I just kept trekking along. Tonight I'm not as motivated as I was last night during my "shift". Last night I had a ton of projects going on and was picking up and organizing all of Ella's things, but tonight will be a more relaxed night and do-all-I-can-just-to-stay-awake kind of night.

I called Ella's dietitian today to check in about the throwing up situation. We have a couple of plans in place to help her tummy not get so upset. We will try a series of things until we figure out what exactly is making her throw up. So this afternoon we started with removing the MCT oil from her diet. So far, so good. The fat content may have been a little much for her this time around and she's not needing as much these days. She has been gaining significant weight which you can see in these photos! She's gone from 3rd percentile in weight to somewhere in the 30s!

Right before we left

That hair!!! Those jammies!!! 😍

She's gotten so big! It's crazy!!! Check out all of the things she's hooked up to. Nuts, right?? I am hoping that, relatively soon, we will be able to condense her feeding times down to an hour or less like we were before so she won't be hooked up to quite as much all of the time.

Our little chunk-a-munk has seemed to settle right into the home life. I can't wait until she starts wiggling around on the ground with Eli again. We are still getting comfortable with her ventilator so that will come soon! She wore his old jammies tonight and it was so sweet to see her in them. Thank you for all of your prayers. We feel them!!!

Love,
Jillian

Lucy, We're Home!

Hi everyone,

WE

ARE

HOME!

I’m writing this at 4 in the morning, so forgive me if it doesn’t all make sense! (Didn't post until now because our internet was down from the storm last night)

We left the hospital after lots of hugs and goodbyes around 1pm. We were all packed and ready to head home after 72 days! We have gotten to be pros at this back and forth thing. Matt sat in the back with Ella as I drove and he asked me how I was doing. I started tearing up and responded with “Sad.” Who would’ve ever thought that I would feel sad taking my baby girl home! As the tears fell for a little while, I realized how much I loved everyone at the hospital. It is going to be so weird not to see them every day anymore. I get choked up just writing about it. The nurses/staff kept telling us, “I hope I don’t see you for a very long time because that would mean that Ella is doing well.” I responded with a slightly sarcastic, slightly realistic, “Yah, I’m pulling for at least two weeks. We have to beat our other record of 10 days.” As we walked out of the hospital we received a lot of looks, mostly I think because people love looking at babies, but once they saw all that Ella’s hooked up to, their gazes changed a bit. It’s a weird feeling being a parent of a special needs kid. In the hospital, Ella felt like a “normal” baby because she was to everyone around there. The norm there was having a child with some sort of illness, whether it be a heart baby recovering from surgery, a baby on ECMO, a tube-fed baby, or a trached baby, it was a “normal”. But when we get out into the world, having a baby hooked up to three different tubes at once makes you feel like such an outsider. I used to feel it when she just had her trach, but now I do even more so. Matt mentioned to me how weird it felt. He hasn’t been able to go with me to her outpatient appointments (the few times we did while home) so he hadn’t really experienced the feeling of being SO different from everyone else. It’s tough. It makes me have such a better appreciation for the other parents out there with special needs kiddos. It’s not that everyone looking at her was rude or judgmental by any means, you just saw a look of “Whoa” because it is weird seeing a baby like Ella.

As soon as we got home we were greeted by a ton of medical people… Four nurses from the nursing company and one representative from our medical supply company. It was really overwhelming. We were once again reminded of how fragile and complicated Ella is. Explaining her story takes forever and discussing her meds is tedious. Moving Ella to go anywhere took multiple people because of her new “accessory” (as my mom calls it)… the vent. The ventilator is SUCH A PAIN. It wasn’t as big of a deal in the hospital because we only moved her from her bed to her bedside when I would hold her. But being in our house, we feel almost confined to our couch during the day and to her bed during the night. I’m sure it will get easier over time, but man today was rough. It makes me miss the “inconvenience” of the oxygen tank… Those were the good ol’ days. I used to be so annoyed with the oxygen, but now I realize how good I had it before the ventilator!

Unfortunately we did not have a night nurse overnight, so Matt and I had to take shifts again. I went to bed around 1030 and he stayed up until a little after 2. At 2 I woke up and will be up until Eli goes to preschool and I have given Ella her 9am meds. Then I will have until about 12 or so to get a little shut-eye. At 8am, we will have a daytime nurse as well as another nurse shadowing her before she starts on nights. So they will watch Ella while I sleep for 2 hours or so. It’s always hard letting go of being in control of Ella’s meds or feeding schedule while I sleep, but I know I will need it! Matt and I are going to be zombies come this weekend!

Ella has been doing pretty well overall! A couple of days ago she was needing 4L of oxygen (which is equivalent of 36%-ish oxygen) and was down to .5L this morning! We had to bump her back up to 1.5L once we got home due to her being in a new environment, but we are hoping to wean her off of that so we have one less thing to lug around and worry about. The amount of things we have to carry around with us is pretty ridiculous. I worry about how her development will be impacted because of not being able to move her around as much as we’d like to or to carry her from place to place. The thought of that completely overwhelms me so I try not to think of it too much. Focusing on the present, right?

I don’t think I mentioned this before, but Ella has been throwing up kind of a lot… We aren’t sure if it’s due to the higher volume of food that she’s getting or the trach making her gag, but it’s one of the “red flags” of the HLHS interstage. This is because we don’t want her to become too dehydrated or her heart won’t function properly. So please pray that she won’t be throwing up as much anymore and that we will once again get adjusted to our “new norm”.

Love,

Jillian

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