test results

We found out today that Scarlett does not have Myotonic Muscular Dystrophy. It was a relief to hear 

that, but then that also means we still don't know what is wrong with her.

I realized I probably have never explained what is wrong with Scarlett, although to me she seems so perfect.

First thing is when she was born, her leg broke as they were pulling her out of me during the c-section. That has almost healed and I am so thankful. That really hurt her. 

She has a floppy airway. Her lungs and all her other organs work just fine, but she needs a tube down her throat to keep her airway open. With time that may strengthen, but if it doesn't, she will need to have a tracheotomy. 

She has poor muscle tone, which means she hardly moves her muscles. Just in the past couple of week, though, she has started to move her lower arms and hands and in the last week she has started to move her head. That is such a big step and we hope to continue to see improvement. 

She also appears to not be able to suck and swallow, but with the tube down her throat, it is hard to tell for sure. 

She has arthrogryposis, which is a tightness in her limbs. We are working with an occupational therapist to stretch out her tendons. This is something we will most likely have to do her whole life. 

And lastly, she has seizures, but she is on phenobarb to stop them.

It's one of the most difficult things to see my baby struggling. I wish I could just take this all away from her. I can't imagine how it is to struggle breathing with a collapsed lung,  or how uncomfortable it is to have a tube constantly down my throat and it makes me tear up every time I think of her little broken leg.  I pray all the time that Heavenly Father will help her be comfortable. It is always such a blessing to see her peacefully sleeping.

Scarlett is being tested now for Spinal Muscular Atrophy. I've done some research online and came across this family in Utah who's two children have it. We should find out those test results in 3 weeks.

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The kids got to see Scarlett again yesterday. I'm so thankful they were able to see her. It's so much better to see her in real person and feel her sweet spirit.

Hunter lifted Jaina up so she could see her. What a nice big brother!

I was talking to one of the nurses today while Scarlett was soundly sleeping. Supposively they tried to put her on her tummy today and she started crying. They even saw her first tears. I felt bad for my little girl. I'm grateful she is able to cry and we realize she is crying (since you can't hear it with the tube blocking her vocal chords) when she is uncomfortable. They moved her back onto her back and she fell right to sleep. It was nice to just watch her soundly sleeping. Anyway, the nurse was telling me of a conference talk that she said reminded her of Scarlett and us. It was from last conference and for some reason, I don't remember hearing it. Elder Rasband spoke exacly how I feel at this time. I was so grateful to read that and so grateful  that we have Scarlett.

Scarlett at 3 weeks

Scarlett is now 3 weeks old! She weighs 6 lbs. 4 oz and is getting chubbier. 

It's hard to believe it was only 3 weeks ago that I first laid eyes on my beautiful baby. It almost feels like it was 3 years ago.

Scarlett is doing very well. Her infection is pretty much gone now and she seems to be feeling better and breathing more steadily. Her eyes are beginning to focus more so we have hope that she will be able to see through those beautiful dark eyes of hers.

They started her back on my breast milk again, but this time they put it through an NJ tube, which is a tube that goes down her throat, through her stomach, right into her small intestine. This way they don't have to worry about her spitting up milk and aspirating it into her lungs, which is likely the cause of her lungs collapsing last week.

As of now, she is up to full feedings and today, they removed her UVC line, which is the IV they put in her umbilical cord those first critical moments after she was born. That is such a big step for our little girl!

My brother and his wife came down last Friday to see Scarlett. I loved watching Jenny beam over Scarlett's tiny fingers and all her dark hair and watching Janzen take pictures of all my other kids art work plastered all over Scarlett's wall, but mostly I appreciated their hugs and words of encouragement. I don't know how we would get through this without our wonderful family.

My parents came down Saturday. I love seeing the twinkle in my Dad's eye when he sees Scarlett.

And I loved watching my mom softly stroke the side of Scarlett's face. My mom has a magical touch and I know Scarlett loved that!

After their visit, they took mine and my sister's family out to lunch at Johnny Rockett's and then afterwards we hung out at the fountains outside the restaurant. It was so nice to sit and talk and laugh with my family. I love them so much!

I had made a quilt for Scarlett before she was born and it had been resting on the back of my rocking chair awaiting her to come home, until Jon thought it would be nice to leave it at the hospital to drape over her isolette to keep it dark while she slept. I love being able to take things to the NICU for her to use.

We love all of Scarlett's nurses and they adore her as well. There have been a couple occasions in the quiet of the night when we'll be talking about Scarlett with the nurses and they'd tear up as they talk about how special they think she is. They have no idea how much that means to me- to know that my baby is being watched over and loved when I am not able to be there. These nurses are like Scarlett's cute little aunts!

A few days ago, I was feeling really down. I was sad that Scarlett was born this way, that she was struggling and there was nothing I could really do. I was frustrated because I didn't know when she would be able to come home and I was worried that I didn't know what her future held. I basically was losing hope. That same day, I was reading the Ensign that had just come in the mail.

The article was about a mother who struggled with infertility. She felt alone, angry and frustrated with her trials. She had forgotten to see the tender mercies of the Lord in her life. She says she was inspired one day to study the scriptures more diligently  and as the months passed, she would record thoughts and inspiration she received while she studied. She soon recognized that although she still had trials, her life was full of blessings.

After reading that, I realized that I can't be sad about this trial I am going through. I didn't want to look back on my life during this time and regret wasting my days feeling down and discouraged. I decided then and there that although I can't change the situation I'm in, I can change me. I wasn't going to worry about what the test results might reveal. I wasn't going to worry about when she'd be coming home. I was going to trust that whatever Heavenly Father's hands us, we'll have the strength to hold on and endure. I was going to be so happy with even the littlest of progress and I was going to make sure that when I was with her, she would know that I love her more than anything. It's true that I don't know what will happen a month from now or a year from now. All I know is that I love her. She is a gift that has taught me something invaluable. She has taught me to not lose hope, that Heavenly Father knows what we need at certain times of our lives and he loves us enough to give us trials.

These past few weeks, I have watched myself grow as I put my trust in the Lord. I was so afraid what was going to happen to my baby these past few weeks, but as I've prayed and tried to cling onto the hope I have, I have felt my Heavenly Father pick me up and help me understand why this is happening to our family.

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