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