Scarlett June: August 2, 2012

Scarlett's tummy isn't bleeding anymore! And her breathing was much better today. They had her down to 30% oxygen.

Dr. Berger told me today that if her next test comes back negative, then the next step is to send her to Primary Children's to get a muscle biopsy to determine her diagnosis. At this point it seems that any possible diagnosis is not good. It feels like we're asking ourselves, "pick a syndrome. none of them are good, but which would you prefer?" Jon and I talked tonight about just not knowing what her diagnosis is, although we know we need to know to help her. Do we want to know, though, that she may not live long? do we want to know that she may have a crippling disease that gets worse with time? We almost would rather just bring her home and enjoy her without knowing there is a time limit.

I got to hold Scarlett tonight! It had been a few days since I got to.

Jon's parent came up to visit tonight. It was so nice to see them! 

We love our Scarlett so much. I think about her constantly when I'm at home and am so thankful when I can hold her in my arms when I go visit her. I am so thankful that lately I've felt more adjusted to our new lifestyle. The drives to the hospital don't seem so long anymore and the time I spend with Scarlett seems to last longer as I cherish every moment.

Scarlett June: August 1, 2012

When I went in this morning, Cindi, the Occupational Therapist, was working on Scarlett's range of motion. She was able to completely stretch out Scarlett's hand after working on it for a few minutes. It always goes back to it's original position, but hopefully with time, it will improve and become less tight.

They have also been giving Scarlett Albuteral treatments every few hours and CPT along with that to break up the mucous in her lungs.

Her breathing has been improving little by little every day. We are so happy to see that! They moved her oxygen down to 45% and her O2 saturation levels were in the upper 90's.

They also started her milk feedings again. 1cc every hour and move it up 1 more cc every 12 hours.

And Cindi wanted to stretch Scarlett's neck today, so they moved her onto her tummy. She loved that!

I was so happy to see Scarlett doing better that I left the hospital in high spirits.

Later I called the hospital at 5pm, and her nurse, Ali, said she was still doing well, but she had residual in her stomach again. Luckily it wasn't dark brown like the other day, but clear. She shouldn't have any residual in her stomach, so we hope that will clear up soon. 

Later on tonight, when Jon and I went to see her, we saw these two little stuffed animals getting friendly with each other. I think they just accidentally got moved into that position while the nurses were moving things around.  It was a funny sight to see!

Lately, it feels like Jon and I are slowly waking from this bad dream were in. We are realizing that the things that are wrong with Scarlett, may never go away- although it is still too soon to tell. She may never be able to move her muscles very well. She may never be able to suck or swallow and she may need a trach to help her breathe.
But even though she has all these problems, she is still perfect to me. Her sweet little face has hope in it, her eyes have determination in them and her tiny fingers grasp on to mine reassuring me that she will be okay.

And that is how Jon and I feel right now. That Scarlett will be okay, even though we don't know what her future holds. We have to keep optimistic for her, because what else can we do? We can't give up hope.

Scarlett June: July 31, 2012

Today my dad made a surprise visit to see Scarlett. He brought her a mink bear that was made from my grandma's mink coat after she passed away. I remember when I was little, I saw that bear in an old box down in my parents basement and always wanted it. Scarlett's a lucky girl, I'm jealous!

Scarlett's breathing seemed better tonight. They stopped her feedings again, though, because they've been pulling out bloody residual from her stomach. They aren't sure where it's coming from, but it's possible that when they put the j-tube in, it could have cause some irritation to her stomach. They plan to see how her stomach is tomorrow before they start up her feedings again.

Her heart rate was a lot calmer tonight and her oxygen was set at 70%. (21% is room air)

The kids made get well soon cards for Scarlett. Her wall is getting quite the collection of art work!

Jon said today, he was wiping Scarlett eye with cold water- he didn't know any better:) and he said Scarlett startled from that. He thought it was a good thing since she was moving her muscles. I actually noticed her do the same thing when I was playing with her ear. We also noticed her trying to move her whole body slightly. Every little bit of progress is a big step for us.

Scarlett June: July 30, 2012

Last night before I went to bed, I called to check on Scarlett. Debi answered and told me Scarlett had been in respiratory distress. Her oxygen levels kept dropping and they had a difficult time bringing them back up. She had called Dr. Simmons to come in and help. Thankfully by the time I had called, she was doing much better. 

They had also pulled back a lot if residual from her stomach, meaning she wasn't digesting her milk very well. They are planning on doing a j-tube today that will bypass the stomach and go straight into the small intestine to see if she tolerates her feedings better that way. They'll start her off with 1cc an hour and go up from there.

I called again this morning and Debi said her O2 saturation levels were much better and she was breathing a lot more calmly. I was so thankful to hear that. Lately at night, I fall right to sleep, but last night I couldn't. I was so worried about Scarlett. I was so grateful for the good nurses and doctors who know how to help my little Scarlett.

My sister watched my kids this morning while I went and saw Scarlett. I am so thankful for her in my life. She is the nicest, happiest person I know so it was good to see her and have some of that cheeriness rubbed off on me. It was so nice to have her listen to my worries and cry along side of me. Everyone needs a JaNae in their life.

Tonight when we went to see Scarlett, her heart rate was super high (in the 190s). Jon and I were worried and tried all we could to get her to relax. We took turns singing songs to her to see who could bring her heart rate down the most. I won with my song I made up when Hunter was born. Jon always teases me about that song because it is so dumb, but at least Scarlett seemed to like it.

Scarlett June: July 29, 2012

Scarlett seemed to be a little better tonight even thought her oxygen saturation levels kept dropping, but they've been able to get them back up. They started her feedings again tonight. 5cc's every hour for 3 hours, with an hour break.

 

My friend watched our kids last night and a sister in our ward watched our kids tonight so Jon and I could go see Scarlett together. I am so thankful for them. They have arranged for all next week to have someone in our ward watch our kids in the mornings so I can go see Scarlett while Jon is at work and most of the weeknights so Jon and I can go see her together. I don't even know how to thank all these people helping us.  So many people have offered help and been so generous with their service. Out of the blue, I'll have friends from the ward drop off boxes of Costco sized snacks and goodies for our kids or homemade treats and every day we've had delicious meals brought over. Our ward would feed us for a months if we allowed it. They have helped ease our burdens so much.

Scarlett June: July 28, 2012

Things got a bit worse last night. It turns out Scarlett has an infection. Her upper right lung collapsed and that explains why she was struggling to breath last night. They started her on antibiotics to hopefully knock that out fast and they've been giving her Albuteral treatments to open up her lungs. Her hematocrit was also low, so they are going to give her a blood transfusion. Scarlett is such a fighter, she is strong and I now she can make it through this.

Scarlett had an opthamologist look at her eyes today. She's been having a hard time focusing with them, so Dr. Simmons was concerned she may be blind. The eye doctor said, though, that the anatomy of her eye is normal. Time will tell whether she is or not, but it seems like today she was focusing them a bit better, and I'm pretty sure when I was taking pictures of her today, her eye winced when the little red light flashed.

Jon's parents came down to visit today. We appreciate so much their words of comfort and encouragement.  When Jon and his twin brother, James, were in the NICU, they worried so much, too, and weren't sure at times if they would even live. I am now having those feelings. It's the worst feeling in the world.

Tonight when we went in to see Scarlett, the nurse told us that Scarlett had a reaction to her transfusion. Her skin had turned all red and blotchy The doctor and all the nurses said they had never seen that in a newborn before. Great, I thought. Luckily when they stopped the transfusion, the blotchiness went away and she seems to be okay.

I decided to wash Scarlett's hair after hearing all this news. She seems to like it when I do that and tonight wasn't any different. I couldn't hold her or do much comforting other than this, so I spent a long time massaging and pouring warm water over her head. I loved doing that.

Her hair curls right up when it gets wet!

Jon is an amazing man and father. He loves Scarlett to pieces! You can see it in his eyes when he sees her and talks to her. He watches over her like a hawk as the nurses adjust her in her bed or do procedures on her. He wants to make sure Scarlett is comfortable and is being treated with great care. I've always been grateful I have Jon and known how wonderful he is, but it hasn't been until now that I realize how truly great a man he is. There is no way I could get through this without him by my side.

Scarlett seemed so peaceful as she slept tonight. That is the way I like to leave her at night, knowing she is comfortable and content.

We don't know what is wrong with Scarlett, but I have to endure this well. I have to keep positive and trust in the Lord. I love my dear Scarlett. She has become a part of my heart. I want so badly for her to be home and in my arms, but I know she is where she needs to be to rest and to heal.

Scarlett June: July 27, 2012

I feel like a broken record when I say that today was the hardest day. So many feelings and emotions are running through my head. I worry so much about my little Scarlett. Questions like: Will she be disabled? will she be healthy? will she live for very long? are running through my mind.

Dr. Simmons "scolded" me today on not worrying about the future because we don't know what it will bring. He told me to focus on the positive- like her feeding were going up, she is able to breath on her own- mostly, her leg is healing and her limbs are loosening up. He is absolutely right. I am just going to have to take things a day at a time and enjoy the accomplishments she is making. I know I can't change Scarlett, and I wouldn't want to if that is how Heavenly Father wants her.

Yesterday, Scarlett had another EEG done and a hearing test as well. The EEG showed she was no longer having seizures, so the phenobarb was helping, and the hearing test showed she couldn't hear out of one ear and partially out of another, but the doctor said not to worry so much about that yet and we would retest later.

I got to hold her again this morning. I loved every moment of it. They almost always feed her my milk while I hold her. She's up to 35ccs now and just needs to make it to 45ccs, but she's been spitting up a lot. They've been worried that she'll aspirate her milk into her lungs so they moved her to a more upright position to see if they could prevent that. 

They suctioned out a ton of mucus from her lungs and nose today. My poor Scarlett. That must be so uncomfortable for her. I wish I could take that away from her. The nurses tell me, though, when they suction her out, she coughs, so that is good.

Tonight when we went to see Scarlett, she was breathing really rapidly, like 130 breaths/ minute. I didn't know what was going on and I was afraid. The nurse didn't seem to be too concerned about it, but they drew blood to test for an infection. I didn't want to leave Scarlett tonight until I knew she would be okay. Her nurse gave her a dose of phenobarb while I softly sang to her and stroked her hair. Her breathing seemed to settle down a bit. 

Something special happened to me, though, while I was singing to her. I started singing "I am a Child of God" and for once I realized that Scarlett was the one teaching me. She was helping me "find the way". She was teaching me that if I but learn to do His will, I'll live with Him once more" I had never thought of the song that way, where my child was doing the teaching. Tears welled up in my eyes as I sang to her. I know Scarlett is a special little girl.

Our other children bring me so much joy during this time. Some days I feel like I will never know what it's like to be happy again, but then they do something that makes me laugh or say something that makes me realize that no matter what happens with Scarlett, we are a family and we can get through this together.

Scarlett June: July 25, 2012

Today was the hardest day by far. I don't think I've ever felt so helpless in my entire life. I think reality is starting to sink in and I feel like I am going to cave.

The reality of Scarlett having a syndrome is hitting me and Jon. I still have hope that if her brain hemorrhaging heals, she will improve, but that is not very likely. After talking to Dr. Simmons today and having him point out all the things wrong with her, I just felt hopeless.

Dr. Simmons decided to remove her ET tube today. It didn't go so well. Her airway is still floppy and she couldn't get air to pass through it very well, so he intibated her again. This time with a larger tube so she could intake more oxygen. He was also going to order an X-ray of her lungs and leg and take more pictures of her to send to the geneticist to see if he knew what was wrong with her.

We came home this afternoon and I made the mistake of researching Myotonic Dystrophy. It seems like Scarlett symptoms match up pretty well to this syndrome. I didn't want to believe it.

Tonight I asked the nurses at the NICU if they've ever seen babies like Scarlett and they said they do about once a year. One baby in particular had Myontonic Dystrophy and many of the other ones died.

Tonight as I was holding Scarlett, I felt sad, hopeless and distant from her. I felt like I didn't know whose baby this was. 

She started to spit up and milk was pouring out of her nose. I didn't know what to do. I didn't know how to help my baby. The nurses came over and helped clean her up and we moved her back to her bed. After the nurses left, I quickly prayed to Heavenly Father. Why was I having these feelings? Help me understand. I didn't want to leave the NICU until I felt that love I had for Scarlett this morning. It took a minute, but after looking into her eyes and soothing her back to sleep, I couldn't help but love her, more than I had before. I realized that the way I would have to bond with her was going to have to be different than I bonded with my other babies. It's true that I could only see her a couple times a day, but during those times I would be able to enjoy just her without any distractions and I could also call the NICU whenever I wanted to check up on her. I couldn't nurse her, but I was pumping and my milk was still getting to her. I couldn't hold her anytime I wanted, but I could still sing to her and hold her little hand. I would just have to show her my love in different ways.

I came home tonight and cried my eyes out. I don't think Jon has ever seen me that way. He started telling me things I needed to hear in that moment. He told me that children with handicapps are innocent, that they must have been so faithful in the preexistence that they didn't need to be tested. All they needed was to come to earth and get a body. That made me look at Scarlett in a whole new light. How humbling it felt to have her as my daughter and how grateful I am that Heavenly Father would choose to send her to our family. 

I love my Scarlett and I can only imagine, my love will grow stronger each day for her. I don't think my heart has ever felt so full of love as I think of her.