Our Tiny Warrior

Correction… I questioned whether a newborn could drink 20ozs so when the speech therapist said it again Lyza clarified & it was only 20ml. That’s approximately an oz. This quote from Rolly in the 101 Dalmatians describes our little Echo today. She finally took a bottle & downed 20ozs! I think she’s tired of eating through her “nose hose”, as Lyza called it tonight.  We had dinner w/Lyza and her & Chris are doing well. Chris even ran home to get some things done around the house. The little yellow paperclip is our little Echo on our family chain that Grandma Ashton started several years ago at a reunion & we just hung it in our car & have kept adding to it. Uncle Jex & Auntie Lyndsey added Echo’s clip while we were at the hospital several days ago.

We visited our little warrior today & she looks so good! It was fun to hold her hand & rub her head & love on her after so long. She got to meet Uncle Randy & Aunt Cyndi today. She also showed her irritation at her Daddy for tickling her.

There are no words.  Less than 2 weeks after this all began and less than a week since Lyza asked everyone to fast for our little Echo and so many miracles have happened! Thank you so much to each of you who dropped to your knees & answered our plea for immediate help. Today Echo met a key milestone as she was taken off all oxygen, tried to take a bottle and was transferred out of the PICU! Our hearts are so full of gratitude for all the prayers offered on her behalf and for a loving Heavenly Father who had mercy on our little warrior.  She still has some mountains to climb but she’s stronger from the battle and we feel like her chances are looking pretty good. Chris & Lyza are also grateful for those who have donated to help with expenses. They have been humbled by your generosity.

Great Grandma & Grandpa Spencer finally got to see Echo at the hospital. The last time they tried she had her episode that sent her back ro the PICU & that was kind of traumatic for them. That made this visit all the sweeter. We also surprised Mommy Lyza when moat of the family showed up to have cake & ice cream with her. A birthday she will never forget. Echo is doing amazing!

Echo gave her Mommy quite the sweet smile this morning for her birthday.  She is off the forced air & graduated to a nasal canula. This is just another baby step but we are happy w/each improvement. HAPPY BIRTHDAY LYZA!💕

 Papa wasn’t planning on going to see Echo today until her Mommy sent a pic of her w/o the bipap. She was awake & aware & her Mommy got to hold her. She looked amazing! She does have a fever & they are looking for a new infection. She also cried quite a bit last night but seemed very happy in her Mommy’s arms. Her liver & kidney are looking good. Baby steps.

 Today they removed 300 more cc’s of  fluid from Echos belly. That is 10oz for anyone wondering. They are confident that now her liver will be able to keep up instead of catch up. All of her numbers look good today. The sedative for the procedure made her sleepy all day but they were still able to lower the bipap settings. The ladybug in the lower left corner is for Echo. Her Mommy has started calling her “bug” because of the way she holds her arms & legs when she’s unswaddled. Chris bought Lyza a cute little octopus in the gift shop to cheer her up but today he used it to freak the nurses out. I think he’s bored.😁 

 So, update for this morning. Echo has been running a low grade fever and seems a little more uncomfortable so they are talking about doing another perecentesis (draining the fluid out of her abdomen manually) they want to culture it to see if she has infection. They have already started her on another antibiotic just in case and got blood and urine cultures just in case the suspected infection is somewhere else.  X-ray was normal, but ultrasound showed new pockets of fluid, which they were thinking is possibly where the infection is. All the liver labs are still trending down, but her CRP (general inflamation lab) did increase, which also shows possible infection.   Other than that, there is nothing significant to report. 

 Due to the fact that we have 2 kids moving this week, 2 kids celebrating birthdays (Jex on the 26th & Mommy Lyza on the 28th), and a reunion…Papa & I decided to make a quick trip up to see our tiny warrior princess. She’s doing well, holding steady and she even let me hear her cry a little.  It’s a waiting game with her liver. The blood tests show that it’s out of acute failure but we are just waiting for it to start working to full capacity. As soon as the liver works completely then the swollen stomach will go down & the breathing will get easier so the mask can come off, etc, etc As we have seen before, if our prayers are specific it works well. We will be praying for normal liver function. Mommy is getting a little braver & going on short walks w/Daddy but Daddy is going stir crazy. It helps a lot when the nurses let Mommy hold Echo. They could probably use a few prayers for comfort. Life is good. God hears & answers prayers and miracles happen.

Lyza sent our update this morning. Echos hemaglobin and hematacrit decreased last night, so they started a blood transfusion, and her tummy is back up to 41 cm, so they are going to repeat an abdomen xray to make sure its nothing new. No other significant changes overnight. 

What an amazing day. Echo is holding her own. Her core temp dropped a bit last night but nothing a bunch of heated blankets & warm packs couldn’t handle. The dr’s say it’s normal for all that she has going on. Her stomach is still swollen but as the liver starts doing it’s job it will start going down. At least it’s quit growing. They did notice the face mask was bruising her little nose so they have changed her to a full face mask. Oh but those eyelashes though.  It’s hard to comfort her when almost every inch of her is covered by medical equipment but she knows our voices so that’s cool. I keep waiting for the other shoe to drop, but I’m trying to enjoy a couple of days w/o any major drama. Her parents have even started wandering the hospital together & enjoying the sunshine & eating outside. Sounds like they might even go out on the rooftop patio to watch fireworks tonight. Please don’t stop with the prayers.They are working! God is good & miracles still happen ?...

To be awakened by the news that Echo was struggling to being stable …well…there are just no words to describe the gratitude to you all & to our Heavenly Father. When the dr’s made rounds they said that  #1-Echo is no longer in liver failure #2-her kidney is working so well that they took her off the meds to make her pee & removed her cath #3-they are going to start feeding her through her ng tube again  She has been agitated but that may be because she’s more awake & doesn’t like everything that’s going on so they gave her something to relax her and a little morphine for pain. She’s also sneaky & keeps pulling her hands out of the swaddle & trying to pull her bi-pap mask off. She’s a fighter!  Chris even dragged Lyza to church & left us Grandma’s to babysit. Talk about pressure! Overall the day is ending well & they felt comfortable w/us all going home. Chris will stay at the Ronald McDonald House & Lyza will sleep in Echo’s room. Lyza is c...

 Chris messaged early this morning. “ echo is pretty angry today her o2 stats dropped to 50 for a minute before i showed up a second ago. there thinking she might be hurting and that’s why she’s struggling so they are going to try to give her morphine to see if that helps.” When we asked him what they needed he said prayers.  Wish we had better news today, but two steps forward, one step back. The drs say this is going to be a marathon, not a sprint. Momma J (Lyza’s term of endearment for her Mother in law) offered to let me ride up with her this morning. We will post more after the drs make rounds.

Let me apologize. I should have updated everyone sooner. You have all been so valiant to prayer for our little fighter. It’s just that when things got calm & she stabilized I just let down.  So from this point on just know that if I don’t update then she is probably bossing nurses around & batting her eyelashes at her Daddy and loving head rubs from Mommy. Everything looked so good this morning they decided not the change much & just leave her alone to rest. Her parents enjoyed some good sleep & eating with visitors in the cafeteria. She’s not out of the woods and we will have hiccups, but today was a breath of fresh air. Lyza has asked us to request that you fast for little Echo tomorrow if you’re able. Anything helps. We love you all! Thank you for your faith!💕

I think I've finally figured out how to post pictures. Amazing what a good nights sleep can do! I'll try to add others to past posts.  Lyza felt comfortable enough leaving Echo for a minute that Mom & Dad had their first date in 2 weeks. They went to the cafeteria, bought dinner, brought it back to the room and ate together by the lights & sounds of the monitors. It was so romantic I decided it was time for me to leave ;) These beautiful, big eyes are what greeted me this morning. She is alert and aware and letting the nurses know when she doesn't like something. But those eyes though!

So blessed to have so many resources available for families here during these struggles. The Ronald McDonald Room & House have helped Chris & I take turns caring for Lyza & Echo & get some sleep in between. Chris text this out this morning echo is still peeing and her numbers are looking ok to good her tummy isn’t shrinking as quickly as lyza and i would hope but everyone says that will take time and on top of that she is so fussy that the nurse had to re swaddle her 3 times because she keeps on messing with her mask. i heard her do an actual real life cry today! she has a lot of fire left in her!

Chris & Lyza are in awe of the love & support that they have received. Once again there have been answers to your many prayers. I wish I knew how to post videos because Chris took one of Echos eyes opening & looking around. We haven’t seen those for several days. She also started being more fiesty again.  I can’t remember if I reported that no infection was found in the stomach fluid they drained or that her kidney was slowly starting to produce urine. We aren’t out of the woods but it’s the little victories. Echo was doing so good tonight that her Mom & Dad went on their 1st date since she was born 2 weeks ago! They went to the hospital cafeteria & ate on a bedside table next to Echos bed. A more romantic setting I truly have never seen. 💕

No change could be a good thing or a bad thing. We really need the meds to kick in so her urine output takes the fluid off her tiny body, …but no change means she’s holding her own & not doing worse.  Lyza did get to hold her and all the dr’s & nurses were good to just do their evaluations w/Echo in her Mommy’s arms. I think that helped both of them & Lyza was finally able to fall asleep in the chair in their room. Chris was also able to get a little rest. 

Friday, July 21 2023 10:50am Please excuse our spelling. Sleep deprivation does that🤪 We thought everyone would like a little good news.  The brain MRI came back normal so far. There are no signs of damage or infection at this point. They have also looked at the fluid they removed from her stomach yesterday and so far it is not showing infection.

We decided it would be easier to update so many wonderful friends & family if we did a blog. Echo is building up fluid still & not peeing.  I guess we need to be specific in our prayers today & pray for her kidney (not a typo. She only has one horseshoe shaped kidney). Because the fluid buildup will start to affect her breathing again, they are giving her stronger water pills over the next couple of hours.  If this doesn't work they will have to put her on a continuous dialysis machine until her kidney cooperates.  They also had to put her on the cpap to help her breathing not be so labored.