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