Ella's Adventures: It's Hard

It's hard having a baby with medical conditions/issues. Hard, hard, hard, hard, hard. Emotionally. Physically. Mentally. Hard. I know that Hazel's chronic lung disease and torticollis aren't the most horrible things for a child to have. Not by a long shot. The thing that makes it hard with her is that when she gets sick it throws me back to every doctor that told me she probably wouldn't make it and if she did there was a list of potential problems that she would have. All of the hard times she went through in the beginning and wondering if she would be OK all comes flooding back. Can you say PTSD?

We've been sick at our house and it's hit Avella and Hazel the hardest. Avella got it last Saturday and by Wednesday I knew it had turned into an infection in her lungs. She and Hazel went to the doctor (Hazel was sick by Monday night) and my suspicions were confirmed with Avella. She looked like death there for a few days and had me pretty worried. Hazel had been grabbing her ears, so I was worried she had another ear infection. She has had three in a three month period! Hazel's hadn't turned into an infection so Dr Wilcox told us to what to look for in case it progressed into something worse. Avella was put on an antibiotic and doing better within a couple of days.

Friday I knew Hazel was struggling. I had done two treatments of Albuterol and it didn't improve her breathing. I made her a Dr appointment and while we waited for that and she napped I watched a video on infant CPR to refresh my memory. [*Note to self: If you are watching videos on infant CPR that means your mommy radar is telling you it's serious and you should probably just head straight to the ER!] I took her in to the NP at her doctor's office and the NP and doctor that saw her told me they were going to send her to UVRMC in Provo. They chose UVRMC over AF Hospital because they have a Hospitalist in Provo. Her oxygen at that point was mid to high 80s.

While loading her in the car I had my first freak out moment. I've been waiting all winter for this to happen, and just when I thought we were in the clear (it's March for goodness sake!) this happens. Even though I knew she was working too hard to breath and probably not getting enough oxygen I just wasn't ready (emotionally) to take her to the hospital and be ready to handle everything (again, emotionally) that may come along with that.

Everyone needs a friend to help calm them down and talk some sense into them. Burgandy is that friend when it comes to Miss Hazel and her lung issues... and plenty of other things, actually. Burgandy gets it. Her cute boy has had more complications than Hazel, so if anyone gets it she does. She reminds me of how strong Hazel really is and helps me understand what I'm going through and reminds me it's OK to freak out and then be strong again. I have so much confidence and peace after talking to her. Everyone needs a Burgandy friend.

Hazel responded well to the oxygen at the hospital. I thought that she just needed a little help and we'd probably be on our way home the next day... Ha! This is where Burgandy would remind me I have a lung baby and she needs a little more help. Which is true. On Saturday she became more lethargic and stopped eating food. She wasn't able to nurse because of coughing fits. Then her retractions got a whole lot worse and her respirations were in the high 80s. Scary stuff, people. Her Bronchiolitis score was the worst possible. She was working so dang hard to breath.
*The video link of retractions is similar to Hazel's. Notice the pulling over the ribs and the dimple by the sternum. Respirations are how many breaths per minute. Try breathing 80 breaths per minute - it's fast!

This is when I had another freak out moment. To see her take a turn for the worse and so quickly almost made my heart stop. The nurses and respiratory trying to be helpful said that she would be fine, that kids always get over it and it just takes time. I was just thinking to myself 'Do kids really always get over it? Even if there is only a 1% chance she could die it's still a possibility. We don't know how she is going to react because she's never been through this before. And she's been a 1%er before!' Then I took some deep breaths and was strong mom again. Freak-out over.

She was given Albuterol, which didn't really work. She looked liked she was sleeping, but she wasn't really. She was very restless. They got her on the high-flow oxygen hoping that her retractions would lessen and her respirations would slow, but they didn't. They decided to send her to Primary Children's Hospital. UVRMC could've put her on CPAP if needed, but they didn't want to wait to send her when she was that much worse. Things can change so quickly with these higher risk babies that they decided it was better to be prepared, and Ryan and I agreed. You know when there are 8 members of the medical staff in your room it's serious. Her tests came back and showed that she has two viruses - Parainfluenza 3 and Human Metapneumovirus. We were told that one (or both, I can't remember) is the worst one for Bronchiolitis. Boo.
*High-Flow oxygen is basically oxygen delivered at a higher flow which helps open her lungs so she doesn't have to work so hard to do it.

She was Life Flighted up to Primary's and within hours of her being there her respirations were down in the 60s or 70s and she was finally able to sleep and be relaxed. No idea why since they didn't do anything differently. I am grateful she was finally able to sleep. She actually looked peaceful.

Can I tell you how fast Life Flight is? Walking out I almost had to run to keep up with them. The coolest part was flying in the helicopter. I got to sit up front with the pilot. Amazing. Seriously. I got to fly over the entire valley lit up at night. It was beautiful. I've decided that everyone needs a helicopter ride at some point in their lives, preferably not a Life Flight one though.

Hazel slept well last night and so did I. Tiffany and Shantelle (Ryan's mom and sister) stayed with Hazel so I could sleep in one of the sleeping rooms. I am so appreciative especially since I'm sick. I feel much better today.

If Hazel wakes up to doctors or nurses she always starts looking around to find me. Just like in the NICU she loves to hold my finger and have me touch her head. I haven't held her since she took a turn for the worse yesterday. She wanted me to and I tried, but she would squirm and was uncomfortable and in pain. She did better as soon as I laid her down. It's hard not being able to hold and comfort my Hazel Face, but at least I get her cute hand and bald head.

Ryan and Trevan went to Instacare today and found out they both had Bronchitis. They are both on antibiotics and will hopefully be feeling well soon. Meanwhile Hazel is still sleeping well. Her respirations are in the 60s or 70s and her retractions aren't as severe.

So... Thank you again to all of you for your outpouring of love and support. It seems that I say that a lot because we are always depending on help from others. But I truly mean it. You are all the best friends and family we could ask for.

Love,
Ella

Now and then. Crazy that it's been a year.

When they were trying to give her an IV five of them blew before the sixth one finally worked. They got them in fine, but when they tried to flush them it would just blow the vein. :( You can see one spot that blew on her poor hand.