an all over good day...

Hello Friends!


Evie had another EEG this morning, and she had no seizures!!! She just got her injection and we are going home at 3pm, horray!


The clowns from the circus came to the hospital yesterday, and Lyla had to teach the clown what happens when you push her nose:

his wasn't working...

Lyla showed him what to do

it was so funny!

EEG pics

photos by Brian Lehmann

the NEWS we've been waiting for!

Hi Friends!

Still here, still seizures but they are subclinical (she doesn't do anything outwardly to suggest she's seizing). Planning to do more IV medication tomorrow and hopefully go home Friday.

ONTO THE GOOD NEWS! Evie had her skeletal x-rays last Friday... and her bones are showing signs of improvment!!! Especially her long bones (arms/legs) and ribs. They are all showing "new bone formation," LOVE those words! I cant wait until her little ribbies are strong and she can get off of this oxygen. I miss my "wireless" sweet baby face so much. This is the news we've been waiting for, it shows that her clinical trial is working. PRAISE GOD! A lot of people have been asking what we do next and I finally have an answer... after these 24 weeks we move into a 2 year "extension study." Same drug, 3x a week at home, with doctor visits every 3 months instead of weekly (: We can do that!!!

Well I'm typing with one hand so I can hold Eve, I will update more later.

Love you friends!!! Love sharing the news with you!

"I wait quietly before God, for my victory comes from him." Psalm 62:1
Thanks Patti!

better afternoon (:

Hi Friends (:

Thanks for checking in, Evie had a much better afternoon today. She had an EEG this morning (lots of wires on her head, recording her brain activity) and she had around 6 seizures in under an hour... not good, and totally unexpected. They put her back on the seizure medicine she was on in October when she was first having seizures, and she is responding beautifully. Awake... smiling... napping peacefully.... all good things.

Hopefully we'll be home soon, and I'll have more smiley pictures to post.

Got ANOTHER great email tonight (Thanks Amanda!) with my heart advice for the day, "Fix your eyes on Me, the One who never changes." Never changes, and loves me more than I can comprehend... I'll take that (:

Love you friends!

don't get too comfortable, mom!

Oh friends, we're back!

I was missing this broken recliner so much that Evie decided to re-admit herself to the hospital... and after a mere 30 seconds on the peds floor, she stopped breathing long enough to get us back into the PICU.

Details... we called the pediatrician Sunday because Evie was so restless from what we thought was narcotics withdrawl so they perscribed us some Ativan... after giving it once last night she set off her apnea alarm (meaning she stopped breathing for 20+ seconds). Today she intermittently stopped breathing and this evening was doing it as frequently as every 20 minutes. Her O2 saturation would drop in the 60s and 70s, and then we would blow gently in her face, and move her around and she would go back up... but on the peds floor she went down to 5... which is bad. Under 90 is bad, so 5 is really bad. So they called "code" and we were swiftly taken back to the PICU.

Evie had a few seizures tonight, so that may be what was happening all along. The docs are going to try some medicine that helped her seizures back in October. Not real happy about seizures, but at least we know what has worked in the past and it's not a "new" problem.

I am actually doing okay, I'm past the emotional tired phase of the evening to the delirious "i'm going to regret this in the morning" phase. It's nice that we know most of the people around here and we are in good hands. Once they get Evie's IV placed, I will go to bed (:

Thanks for praying for us (: If you could pray that we could get this figured out accurately and quickly that would be wonderful. I am already feeling guilty for putting Lyla through this again so soon. Hopefully it will just be a few days.

Love you friends. I'll be thanking God for you from my plastic burgundy recliner (:

home!!!

Hi Friends!

We were discharged late this morning from the hospital and have been spending the rest of the day unpacking, resting, and catching up. Evie is doing great, she has taken two bottles by mouth, so hopefully she will continue to eat well and we can take this NG tube out tomorrow!

I have permission to post our new friend Aria's blog, it is aria.org.nz . They have an amazing story of faith through the struggles of a transplant. Check it out and add her to your prayer list!

Here are a few pictures from the past 2 weeks (:

Love you!

one of many reasons Lyla wanted to stay at the hotel!

Evie's first pic off of the vent...

Lyla, nurses, and birthday cupcakes

Evie so glad to be home!

The Elsaesser Girls (:

blessings, blessings, and more blessings...

Happy 5 Month Birthday Evie Jayne!!!

What a blessing to celebrate 5 months of Evie's life that we weren't supposed to have. John bought cupcakes today at the grocery store, and Lyla distributed them to nurses and friends we have made on our floor. When the nurses asked Lyla what they were for she would say "For Evie Jayne Jayne!" It brought so much joy to my heart to watch one of my kids celebrating the other.

More blessings, we are probably going home tomorrow! Yes... TOMORROW! Evie had a good day and is on normal oxygen (instead of high flow - for you health professionals), the kind we have at home. We get two new pieces of equipment to take with us... a feeding pump, and a home suction machine. Add that to the oxygen concentrator, cough assist device, pulse oximeter, and apnea monitor and we could run a full service health clinic! We tried to feed Evie by mouth today but she just didn't seem quite confident and I didn't want to push it, which is why we are taking the pump home.

The biggest blessing is that I got yet another perspective adjustment while spending nearly two weeks here with Evie. The fact is, two weeks in the hospital is NOTHING compared to what some families are going through here. Not to mention the fact that we are hospitalized in our home town, where almost all of my extended family lives. I met a wonderful family across the hall, who has flown halfway across the world to get their daughter a life saving transplant. I need to ask her mother for permission to pass along their blog. It is worth reading, and if you have a praying heart I would encourage you to pray this little girl, and all of the transplant kids. For now you can call her "the girl across the hall from Evie," God knows who you are talking about (: They could be here for months. I hope we can spend time with them outside of the hospital and give them a place to kick up their feet.

In conclusion, Thank you Lord! that Evie is getting well, and for surrounding us with kind, caring, and knowledgeable doctors, nurses, and new friends. We have had an amazing nursing staff which makes a world of difference.

Love you friends! Thanks for journeying with us, and praying for Evie. We are exhaustedly excited to go home and get some rest (:

Wednesday...

Hello Again Friends,

I thought I should title my post "wednesday" because I'm slowly losing track of days... and John and my mom both had to tell me what day it was! Maybe now I will remember (:

Today was a great day for the most part, by early afternoon they found a medicine that has helped Evie with her withdrawl symptoms. She rested peacefully most of the afternoon, even taking Pedialyte from a bottle twice.

She had another de-sat episode this evening, where her pulse and O2 dropped significantly, and there's really no way to prevent or anticipate it. Hopefully she will not do that again as I got the feeling they are going to try to send us home Friday. I asked if we can take an ambu-bag home (helps with CPR) so that will be nice to have around just in case.

Physically she is looking like she has lost quite a bit of weight, but I guess RSV can do that. Hopefully it won't take long to plump her back up. Physically I look like I got punched in both eyes... but that's what happens when you have two kids under the age of three, and one of them needs a little extra attention. (:

I have our IFSP, MDT meeting with the OPS people tomorrow, should be good to get that paperwork out of the way and get going on her therapy. Thankfully they are coming to the hospital to do the appointment since we aren't home.

I will keep updating, hopefully Evie will be well soon! Keep praying! Don't worry about Lyla... I told her today that I know it's hard when Evie is in the hospital and that hopefully we could go home soon and she said "no mommy! i like the hotel!" it was cute (:

Love you friends.

"For I know the plans I have for Evie," declares the LORD, "plans to prosper her and not to harm her, plans to give her hope and a future." - Jeremiah 29:11
-i changed a few words (:

oh the ups and downs...

Hello Friends (:

Hmmm how do I describe today.... well up and down. The best news is that Evie got off the ventilator this morning around 10:30. She did great all day, with a few bumps in the road when we were suctioning her.

About 8pm tonight she really got the shakes... it is bizarre but she has her eyes wide open, is flailing one arm around, and kicking her legs. She just can't fall asleep, and they think she is going through withdrawal from the narcotics they had her on when she was ventilated. She was on pretty heavy narcotics for the 8 days she was on the vent and now they just have to get out of her system. Hopefully she will settle down soon or it's going to be a long night. I might just park it in her crib so I can re-bink her every time her binky falls out. (:

She has lost her voice from the vent so I can't even really tell when she's crying, it just sounds like loud hissing. I feel so bad for my poor baby. But she is getting better. I need to keep remembering that.

Thanks for praying, I am getting to be a high maintenance friend with all of my requests! I appreciate your prayers, love, and caring for us.

Love you, Lindsey

i should be sleeping (:

I have been thinking that very thought several times today, but Evie's doing so well I would rather celebrate and sleep later! (I'll regret that tomorrow...) (:

Hello Friends!

WELL thank you for praying because I spent most of yesterday crying. They turned Evie's vent settings down twice, and her breathing went down right with it... meaning she wasn't breathing on her own. I was so immensely dissapointed. BUT I slept in the hotel last night and when I got down to her room this morning, they had weaned her almost all of the way down!

It was like God was standing right in front of me saying "See lady, give me control and I'll take care of it!" How is that so easy to forget??? I feel like as Evie's mother I am her main advocate, but I need to take a step back more frequently and place this child in the Lord's hands. I can't heal her, but HE CAN. I can sit in her room all day every day for weeks, but he is going to heal her, on his clock.

That being said, it is the plan to extubate her tomorrow morning! Not sure what time they do rounds, but it's my turn to sleep in her room, so I will definitely be here. THANK YOU for loving us, I can't tell you how many emails I get that start with "you don't know me" and people express their love for Evie and that they are praying diligently for her. It blesses me beyond measure.

"Now Glory be to God! By his mighty power at work within us, he is able to accomplish infinitely more than we would ever dare to ask or hope" And believe me friends.... I ask for an awful lot!!!

Love you (:

the next 24...

Happy Valentines Day Friends -

You may think you are having a good day, being lavished in love, but my morning started with Evie waking up for nearly 15 minutes and smiling at me... for the first time since Monday. So no offense, but my morning was better than yours! (:

They replaced Evie's central line (IV type thing) this morning, and she is doing so well they started weaning her off of her vent! The next 24 hours are going to be the most important, as they will watch her closely. If her blood gasses don't stay within a good range they will wean her more slowly, so let's all pray that she stays within all the normal ranges and they can extubate her in the morning (:

Thanks for checking in and loving my precious girls!
I will update soon (:

a breath of fresh air...

Hello faithful friends!

Thanks for checking in. Evie has had an okay day... her x-ray is slightly better, but she definitely will not be weaning off of the vent until Monday at the earliest, possibly not until Wednesday. A few days ago, even yesterday, when Evie would wake up and open her eyes she would cough and gag on her vent and they would have to sedate her more... but this afternoon she opened her eyes and we talked to her for a while and she just stayed awake and calm enough that we could enjoy her for a while. It was just what my heart needed... and makes me ache that much more for her to be healthy again. I can't explain how much I miss holding her in my arms but with a vent on one side of the bed and IVs on the other that just isn't possible.

This afternoon my parents took Lyla (thanks guys!) and I got a nap and a short workout. I was feeling almost clostrophobic this morning... and remembered that I haven't been outside since Tuesday morning. So after my workout I sat outside on a bench for about 5 minutes and took deep breaths of fresh air. I could actually FEEL the weight of the world lifted off of my chest for a few minutes as I watched cars go by. I needed a little perspective that we WILL get to take our sweet girl home soon, and Monday is only 3 days away even though it seems like an eternity in her little hospital room. And it was a good reminder that I need to be taking these deep breaths... alone... outside... thanking God for fresh air... a little more frequently (:

I got an email from a wonderful lady a few days ago with this verse:
... in this world you will have tribulation, but be of good cheer, I have overcome the world.
- john 16:33b

Thank you Lord for overcoming the world for me, and taking care of my Evie Jayne.

Love you friends! Keep those emails with good verses coming. I'll update soon (:

still here... thursday...

hi friends (:

we are still here in the PICU... evie's x-ray of her lungs this morning looks "unchanged" but she physically looks a lot better. today is a day of rest for her, she is still sedated while on the ventilator, so hopefully by tomorrow there will be some improvement and we can wean her a little bit.

thank you so much for praying, today is a much better day. AND last night we got a room at the hotel connected to the hospital so I got to sleep in a BED with lyla in the same place!.... and i was so excited i couldn't sleep - ha ha! i was going to blog to you then, but my internet doesn't work up there, which is probably a good thing because i'll sleep more (:

keep praying, Evie is touching lives one nurse, one doctor, one respiratory therapist at a time.

love you (:

hanging in there...

Hi Friends (:

Thanks for checking in, we had a pretty uneventful day. Evie's lungs are still pretty plugged up and inflamed, so we are just waiting for this RSV to run its course. Then we can take her off the ventilator and give her a few days to recover before we leave the hospital. Evie's pulmonologist came up today to check on her and said this isn't unexpected with RSV, and even healthy kids can be hospitalized and ventilated... so for someone with little reserve like Evie it's a nasty virus and we just have to wait it out.

She has had a few episodes of choking and coughing on her vent tube, which is not easy to watch, but it is part of getting this gunk out of her lungs. The good news is, the doc said Eve might be able to wean off the vent in a few days, which is better than the week that the nurse practitioner was thinking.

We could use prayers that Evie would stay stable, and her body would handle all of this medical care. Her little eyelids are so swollen from all of the fluids.
When I put my face on hers, she squeezes my fingers (: I love this little girl.

Bye for now! Love you and thanks for praying!

need prayer...

Hi Friends,

I think I mentioned in one of my earlier posts that Evie tested positive for RSV on Saturday. We admitted her to the hospital this afternoon just to get her some IV fluids and around 1am she had such a hard time breathing, coughing and choking that they had to put her on a ventilator and move us to the PICU. She looks pretty bad, I feel awful for her.

Will you pray that her RSV clears up, and that her numbers all stay okay in the meantime? I think she will be mildly sedated most of the time we're down here, so she doesn't choke on the vent tube.

And if you could continue to pray for her overall health and strength we would appreciate it.

I haven't forgotten that Evie is living proof that God answers the prayers of His people, thank you for lifting us up.

Love you (:

photos from Wednesday...

I mentioned in our last post that a photojournalist came with us to our appointments last Wednesday, these are a few of the photos he took.

Thank you Brian!

Lyla cruising on the stroller.... on our way from x-ray to pulmonology

getting my notes in order before our pulmonology appointment...

getting checked out

on our way upstairs...

in the LIED treatment center for Evie's injection

ending our day at Children's for a sleep study...

Lyla checking Evie...


on our way to "blue food"...

Lyla's favorite Children's Hospital specialty... cake on her own tray (:

photos by Brian Lehmann of Brian Lehmann Photography

what a week!

Hello friends! I can't believe this week is almost over, I actually feel like Monday was about a month ago! Here are our highlights:

Monday - before Evie's injection we had a great meeting with the PT, OT, and teacher from OPS. They thought Evie was a doll and had some great advice for me on how to work with her, and Lyla was in the middle of the action at all times. We have our next appointment on Feb 18th, and then I will get all of the paperwork about her present level of functioning, and where we should be.

Wednesday - we had a chest x-ray, followed by a pulmonology appointment and then her injection at UNMC. Evie's pulmonologist thought she was doing much better than when we were hospitalized a few weeks ago, but still wanted to do a sleep study... so we went ahead and spent the night at Children's to get it out of the way. Results were fine, no changes for now - hooray!!! We also had a photo-journalist come along with us for the day, who took some amazing pictures I can't wait to share with you. I will get them posted when I'm sure it's okay with him (:

Friday - Injection... and Evie wasn't feeling so well, seemed like congestion was back with a vengeance...

AND today - decided to take Evie back to see her pediatrician, as her congestion is just awful, and she didn't get much sleep last night with coughing. AND for the bad news... she has RSV. Let me just precede this by saying our health insurance has denied all of Evie's claims since January 1st... including the RSV vaccine. So now we have a nebulizer, and cough-assist machine to add to our home machinery.

SO our main prayer requests would be the health of both girls. Evie has RSV, and Lyla's cough is probably RSV also. We are praying praying praying that we won't end up in the hospital. If Eve doesn't eat well, or her breathing gets worse, we will be taking her in. Secondly, we have been having a heck of a time dealing with insurance. I talk to them or get a letter at least everyday. Like I said, all of Evie's claims have been denied, including a 6 day hospital stay, so cooperation on their part would be a huge relief. We have our application in for Aged and Disabled Medicaid waiver, so if that goes through and Evie can get Medicaid I can't tell you what a huge relief that would be. I am not worried about the insurance issues... I know they will go through eventually... it's just so frustrating to have to deal with that when I should be enjoying time my kids.

In conclusion... you all know I have been thinking quite a bit lately about Evie's future... and God has been reminding me consistently about two important things that bring joy to my heart when dealing with her health.
#1. We have had four beautiful months with our daughter. Four months that we weren't "supposed" to have. I am thankful for each and every minute.
#2. It's not about this life friends! My beautiful baby girl is going to walk the streets of heaven with long straight legs, and strong healthy lungs. This life is but the blink of an eye compared with the glorious eternity we are looking forward to.

Love you friends, we won't be at church tomorrow so keep in touch this week! Bye for now (: