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