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