A Heartfelt Story : November 2018

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

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!