Our Tiny Warrior

The genetics counselors contacted Chris & Lyza to let them know that Echo has tested positive for the gene that causes hypertrophic cardiomyopathy. She isn’t alone as many of her Nana’s family has this heart disease. She has a follow up w/cardiology next week to discuss long term plans but we are glad that it was discovered early. Many people w/this start having symptoms in their 30’s so she has a head start on keeping an eye on it. She also has a great uncle who is trying an experimental drug that can hopefully help her in the future. Other than that, she is doing amazing! She loves to eat & has reached 8lbs 4ozs. She also loves to snuggle, sleep and be outside.

From Mommy Lyza… Had Echos appointment with the liver doc today. He is supper impressed with how good she looks. He said that her labs are looking really good from what came back already. He told us to finish what we have left of the liver medication, and then she can stop it, and we can stop the acid reducer. We have to wait to see what her vitamin D lab shows but may be able to stop that medication as well, so she will only be on 1 med. She gained some weight since leaving the hospital and is now at 8 lbs 4 oz. 😊 he said as long as our other providers agree, we can move her feeds to every 4 hours at night as long as she continues to gain weight. 

Echo had her follow up appt with the eye dr. They need to watch closely for side effects from the viral meningitis. She passed w/flying colors & doesn’t need to go back for 6 months. She is also doing well to take all of her feedings by bottle so she got her NG tube out yesterday. Good things happening! Guess we should add that she has 4 cousins that adore her.

Echo is doing amazing! Most of her feedings are strictly bottle so the dr said Lyza can pull her NG tube if she continues to eat well. Go Echo! Her Mommy is also doing amazing! Go Mommy! And them their’s the amazing Daddy. Able to stay awake all night w/Echo on a single Monster! Go Daddy!

After 27 days Echo is on her way home! So grateful to everyone who was cheering for her & her family. We will still update occasionally.  Thanks for all your prayers & helping us get our miracle. We love you all!💕

This is from our text from Lyza this morning. From rounds this morning. We are shooting to be discharged tomorrow and as long as she shows good weight gain tomorrow morning cardiology will pass her off and we can go home. If not we may have to stay until saturday.  Overall she is looking really good and we have most of our follow ups scheduled already.  She had her picc line removed this morning because no one else needs labs and all of her medications are by mouth (NG) now.  From rounds this morning. We are shooting to be discharged tomorrow and as long as she shows good weight gain tomorrow morning cardiology will pass her off and we can go home. If not we may have to stay until saturday.  Overall she is looking really good and we have most of our follow ups scheduled already.  She had her picc line removed this morning because no one else needs labs and all of her medications are by mouth (NG) now. 

Our little warrior is checking off boxes like crazy and Mommy is getting educated on how to feed her using the NG tube. Why do we get the feeling we might be busting out of this joint soon?

There are absolutely no words to describe our gratitude today to our Heavenly Father, all those who have worked so hard to save our Echo and to you for the prayers offered on her behalf. Here is the text we just received from Mommy Lyza.  So they just did rounds on Echo.  The infection is cleared from her spinal fluid. We will be doing another echocardiogram today or tomorrow.  Speech will be coming at 1145 and will discuss with them what needs to happen for the swallow study if this can be outpatient or if it has to be inpatient.  Will get labs tonight, and then liver can decide if she is passed off.  They will start doing NG tube education for me today so we will know how to take care of that until she no longer needs it.  They said it would still be a few days, but we may end up discharged by the end of the week!

No results on Echos test yesterday. She was so brave, but a few tears were shed (see pic #2). We hope to get those results sometime today. I’ll post as soon as we hear because we know so many of you are vested in the recovery of our little Echo. Until then, here is another adorable pic of our little warrior. She was feeling much better by last night. The scab on her nose fell off & she’s even cuter now, if that was possible.

This morning we would like to honor “Momma J”. Momma J is what Lyza affectionately calls Chris’ Mom Laura. This has been extra hard on Momma J because Echo is her very first grandbaby. Momma J is an amazing woman. She is so kind, soft spoken and loving. She is always thinking of others and loves her children fiercely. During this adventure with Echo she has been a quiet comfort to all of us.  She works as a nurse all day, crazy, long hours but she makes the long drive to salt lake with a cooler full of drinks for everyone. Not just any drinks. She has sat back & listened & paid attention & brought our favorite drinks. Because she brought extra Monster energy drinks for Chris, most Dr’s & nurses in the PICU are now Monster junkies because Chris started handing them out to everyone. We love Momma J💕 (Big day for Echo. She has a spinal tap this morning to see if the infection is gone.🙏)

Papa finally got to hold Echo for the first time in a long time. She seemed to enjoy it & I know he did.  She is still doing well but a lot is riding on the tests tomorrow.  🙏that she passes with flying colors.

Today was just a good day. I got to spend the day w/Lyza & Echo while Papa helped Chris w/some projects he needed done before he heads back to work Wednesday. I think I got the better deal. Echo did well all day and it was just a joy to hold her and be around her. She is a little stinker & no matter how close we watched her she still got her fingers around her NG tube & got it pulled out a little. Her Mommy keeps telling her that if she would just take the bottle they would take the NG tube out out but she’s a diva & doesn’t want to work for her food. Tonight the night nurse gave Echo her 1st real bath and dressed her up cute. We hate to get our hopes up, but God willing, we hope that she’s turned the corner and will continue to have more good days.

Lyza says her theme song at this point is Blue Skies by Willie Nelson “ Blue skies Smiling at me Nothing but blue skies Do I see  ....  Blue days All of them gone Nothing but blue skies From now on” Lyza’s update from today “Echos labs this morning looking good. Platelets have improved and hemaglobin is normal!  Her liver labs are still slightly trending up but the liver team is still not worried. They are starting a new medication to see if it will help while she is still improving. The echocardiogram was similar to the last one showing the thickening, but from what the report said it is not worse. We will have another echocardiogram before leaving (whenever that is) We are going to try to condense feeds again to 69 ml over an hour and then 2 hours off. We will see how that goes. She didn’t tolerate this well last time.”  Just like with ET and Eliot when baby is doing good Mama is doing good so today Lyza is doing a bit better. 

So many of you want to know how you can help. We’ve been at a loss until this morning while I was talking to a friend. If you would like to, please send a note or card to Chris & Lyza to cheer up their days & let them know we’re thinking of them.  You can send it to our home: Chris & Lyza Johnston c/o 440 Ridge Lane Payson, Ut 84651  Or Email something to me at pjashton@msn.com & I’ll print & deliver it.

Lyza & I spent most of the morning holding Echo and writing our memories of this horrible nightmare. Echo seemed like she was doing great.  By lunchtime her temperature was dropping (a sign of infection), her belly was getting large again & she was a little yellow, so her doctors ordered blood tests & cultures. The poor thing had just had an iv removed because it had blown so to do these tests she needed another iv put in. Can I just say what amazing teams they have at Primary Childrens! The iv team had her iv in one stick even though almost every vein has been used in the past 3 weeks. They also sent a genetic team to ask questions about our family’s health history due to Echo’s new found heart problem & one kidney. After discussing things w/them we  have verified that our family is a medical nightmare.🤪 Lyza is struggling severely and needs your prayers. She has tried to be strong but the ups and downs are wearing on her. Her husband & family are trying ...

I have the opportunity to spend a couple of days with Lyza & Echo so Daddy can get away. He has been amazing but was getting a little stir crazy.  It seemed like most of the day Lyza got little bits of concerning news. The most pressing is that Echo’s heart wall seems to have thickened rapidly.  They are also concerned by her rapid respirations. Because she was breathing too fast they were unable to try to bottle feed her today. The cardiology team is watching her closely & they will do another echocardiogram Monday to see if the thickening gets worse.  They have also scheduled another lumbar puncture for Monday to make sure the infection is gone.  It has been nice to hang out with my Lala & watch her sweet interaction with her precious daughter.  Please keep those prayers coming. They work!

Echo is still doing well, but may be facing another challenge. About a week ago she had an echocardiogram on her heart because one of the nurses had detected a slight murmur. Doctors were confident it was a normal newborn murmur that heals itself. They did a second “echo” and still have some concerns because of a family history of heart problems My Spencer family has a genetic heart problem called hypertrophic cardiomyopathy. It causes the heart muscle to thicken & can cause many serious problems.  With that being said, they did say that the difference between the “echos” may have been different radiologists or different angles. So today we ask that you are specific in your prayers for Echo and pray for her little heart. We know that our Heavenly Fathers has answered our prayers so far.