(Slowly) Getting Better

I can't believe it's been a week since she checked in! She's doing better each day. Over the last few days they've been able to wean her oxygen very slowly. Every time they've tried to move too quickly she's had to be bumped back up. Lat post she was at 16/8 on BiPAP. Now she's on CPAP at 7. Yea for progress. It's such a slow process (her more so than a term baby without lung issues). They've turned her oxygen flow down a couple of times today, and they're going to again tonight. Hopefully she will be able to get the mask off tonight in time for bed! Time will tell if we're moving too fast.

They did another x-ray to see if she had pneumonia. She's on antibiotics because they weren't sure if she did.  They said her right lung was collapsing a little (this was when they had turned her down a couple of days ago and her oxygen saturation kept dipping). That was one of the times they had to turn the flow back up (flow is the amount of pressure blowing into her lungs to keep them open). She also got a diaper rash that turned out to be a yeast infection.

She started smiling again the last day or so and today she laughed. I missed that a lot. She's playing peek a boo with all of the doctors and waving hello and goodbye. Oh it makes my heart glad to see her happy again. I hope we're home by Monday or sooner. It's hard to know exactly how long she'll be here, but she has definitely turned a corner and is improving more quickly.

Thanks to everyone who has asked how Hazel and I are doing. Now that she's feeling better I'm holding her the entire time I'm here which doesn't leave much time for blog posts, texting, or phone calls.

Love,
Ella

 

 This was when she finally woke up. She wasn't very active, but she didn't want to let go of me.

She has been reaching for the light arm since she got here. I would think she was asleep 

and all of a sudden I would see her little arm reaching up. Ha ha.

She rips off her leads all the time. 

Poor baby. She's pretty used to the mask. She will get really mad all of a sudden and start grabbing it trying to rip it off.  She's ripped it off a few times today. The saddest is when she starts rooting while I'm holding her and she cries because she can't nurse. I have to lay her in her bed because she won't calm down if I'm holding her.

BiPAP

It's hard not to feel like we're moving backward. I know it won't take as long to wean off of everything as when she was in the NICU, but still. She was put on CPAP last night and then BiPAP. With the BiPAP they use the same mask as CPAP (they have a bigger mask that would cover her nose and mouth, but she's tolerating this one well), the difference is that the BiPAP gives more pressure when she's breathing in. On CPAP her pressure was set at 8. On BiPAP it's at 8 while she's exhaling and up to 16 while inhaling. The expected result is that the extra pressure to help keep her lungs open will keep her from having to work as hard.

When babies get too agitated wearing this mask they sedate them. So far she hasn't minded it. I'm glad, but it worries me that she's not bugged by it. That means that she's still pretty sick.  

They also gave her a feeding tube yesterday morning. I think it's helped her to have food in her belly. It's so much better than only getting her nutrients through an IV. What this means is that, just like when in the NICU, she has to be breathing and eating to be able to come home. She is on day 7 of the illness today, so hopefully she starts getting better (days 5 to 7 are typically the worst). I was told this morning that when they wean her back to the high flow she would be moved out of the PICU.

She blows lots of spit bubbles. 

The nurses always wrap her arms by her sides so she isn't able to reach up and pull everything on her face (see first picture). Ryan and I keep sneaking her arm out so she can hold our finger.  :)

Love,

Ella

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.

One of the nurses at UVRMC makes these cute little IV covers so the babies won't touch their IVs.

This is when she wasn't doing well. She didn't have my finger so she found something to hold on to.

 This is the best picture I could get from the helicopter. The ride was a little bumpy. So pretty though!

These were taken when she first got to Primary's.

Hello, old friend. I've missed you... not at all.

My sickies at home. We had to take Trevan's heating pad away 

when we realized he had a temp of 104°. Oops.

My Body

I have to start by saying happy anniversary! Today marks one year since I checked into the hospital. One year! When people ask me if it feels like it's been a year I have to say yes and no. 

The memories still seem fresh and raw, but in a way they do seem as if they happened ages ago. 

I'm grateful we all made it through OK.

         Watching my children discover how amazing their bodies are has become one of my favorite things of being a parent. I love watching their delight as they discover that they are good at drawing and painting, they can do a back flip, and being excited they’ve grown enough to finally be able to do the monkey bars! Seeing them learn how to control their bodies as they grow and are able to do more is very rewarding.

         It’s sad that so many people are critical of their body based solely on looks. I know I’ve been guilty of it. I think we could all benefit from pausing at these moments we're critical of ourselves and just stop and think about all that our body does for us. We can learn to appreciate our unique bodies instead.

A few weeks after I had Hazel (at this point I still had to walk very slowly and use a wheelchair if the walk was too long) I got out of the shower one day and happened to catch a glance of myself in the mirror. You know what my first thought was? My body is amazing! Even my post baby, stretch marked, poochy bellied, saggy body is amazing. I know, I know… That word (amazing) is overused (three paragraphs in and I’ve used it four times now ;). Ya, ya you say. We know bodies are amazing, but I really want you to know that yours is amazing too.

         I think not having control of my body for so long gave me a greater appreciation for what it HAD done. It grew a baby. That alone is a lot. It survived being in pain every day, recovery form a pretty intense cesarean, my bowels shutting down, my uterus ripping open, and being at a point where everyday things (like showering) were painful. Here I am a year later feeling normal. Normal! I often reflect about this past year when things were getting worse and worse and I’m grateful for every normal day I have. I’m still not as strong as I was pre-pregnancy. Sometimes I try to do things I was able to before and I’m surprised when I can’t. I just have to work harder to get back to where I was.

         Is my body perfect? No. Have I lost all of the baby weigh? Nope. And I’m OK with that. If I wasn’t I would do something about it. Exercising while having a baby that is still nursing through the night just doesn’t fly with me. I know I will feel strong like I did before. I know I need to love my body so it can love me back. You should love your body too, because it’s AMAZING... just like you. 

Love,

Ella

9 Months!

Those cheeks! I'm going to miss them one day.

Hazel LOVES to eat. Half of the pictures from the last couple of months are of her eating - partly because I can't hold her and take a picture. She also can't sit up on her own yet. It makes it tricky to snap photos. :)

Her first tooth came in last week (the 9th to be exact)! Funny thing is I didn't even notice it until a couple of days before it popped through. I think she's the youngest (adjusted age) to get a tooth. Ethan was over a year when he got his first one. Ha. It makes sense why she has been chewing on everything lately.

She weighed 13 lbs 14 oz at her 9 month appointment. Her percentiles crack me up. Her weight is about .3 %, her length about .1%, and her head is in the 17%! 

She still does therapy every other week. She has been improving, but she had a setback when we went to Arizona for Thanksgiving. I think it was all of the driving and me not remembering to do her stretches and exercises. It was hard not being at home in our normal routine. It didn't help either that she had her immunizations when we got back. There was no way she was going to let me stretch her for a couple of days after shots. Now she's sick and I had to cancel her therapy appointment for tomorrow. I hope at the next appointment there is some progress.

 

Love,

Ella

Family Pictures 2014

 

In our family pictures last year I was pregnant. Crazy how much change one year brought. 

Love this family of mine. I'm so blessed. :)

6 Months Old & a Blessing!

Hazel was blessed this month by her daddy. It was so neat to feel like everything has come full circle since we started our journey last year. 

There have been so many changes in this little girl since my last post. Hazel isn't the fussy little baby she used to be. For the last couple of months she has been happy! Happy! She used to easily get overstimulated, but now she enjoys things that used to push her over the edge such as walks (for quite a while she hated walks), riding in a stroller, people talking to her, therapy (fine, she doesn't enjoy therapy, but she is able to calm herself down after stretching), music and noise. She loves to hold toys and grab at anything she can.  She is getting closer to sitting up on her own. Yea for progress!

It's been about a year since I started having complications in my pregnancy. Oh what a year can bring. I'm grateful it brought us a precious baby girl. What a miracle she is. There isn't a day that goes by that I am not amazed at the fact that she is here with us - and healthy! I don't pretend to know why Hazel and I (and my family) have been blessed in the ways we have. We all have different paths and all I can do is be grateful and learn from the experiences I've gone through. I'm grateful to my Heavenly Father for His many many tender mercies throughout my trials.

Love,
Ella