partly cloudy...

Hi Friends (:

Well Dr. Pat put it perfectly this afternoon at Evie's sick visit... last Friday she was Sunny with clear skies and today she is Partly Cloudy. Hopefully we can keep away that chance of rain. She most likely has a virus, but we're putting her on precautionary antibiotics, and are going to start breathing treatments to see if it helps to unclog the gunk she has building up.

It just about broke my heart when Dr. Pat said "yeah, she just doesn't have that glimmer in her eyes that she had on Friday." Ugh. add to that a partly cloudy mama.

I truly believe that with loads of prayer and rest Evie will be all cleared up and ready to go for surgery. We have 18 days, and her cold should run it's course in 7-10 provided it doesn't settle in her lungs and grow in there. Will you pray that Evie gets better quickly, and Lyla doesn't go bonkers while I keep her away from any potentially sick human being (that being everyone) for the next two and a half weeks? Also that Eve can keep weight on during her cold... shes already lost 4 oz... shes 11-7.

Thanks friends. Love you.

my BIG girl!!! and her feet...

Hi Friends!

Hope you all had a good weekend, and got a little R&R. We had a great weekend, starting with Evie's 9 month doctor appointment on Friday. Yes. 9 months. Where did time go? I have no idea!

Soooooooo (drum roll...)... Evie is 11lb 11oz!!! Her weight has always been going up... very... s.l.o.w.l.y... but this past few months she had a spike upward! I had that glimmer of hope that she would be on the growth chart (even like .5%) but we are getting closer every visit. Her head circumference, that used to grow relatively normally, dropped significantly, just more assurance that she needs surgery. I asked Dr. Pat if we could measure her from under her chin up around her soft spot... but I guess that's cheating. It was worth a try (: Dr. Pat said she looks the best he has ever seen her. I'm pretty sure I was beaming with pride when we left the office.

Another big step... Evie found her feet on Thursday! Her Physical Therapist and I might just have to have some cake and ice cream and do a happy dance on Wednesday at therapy. We have been raising her pelvis on a little pillow... putting wrist rattles on her ankles... playing "mommy's gonna eat your toe toes!" and all sorts of ridiculous things... and on Thursday she just reached on down and found them. Way to go Evie Jayne!

Lastly (and not as happily), Lyla is coughing, and Eve is congested. Evie projectile vomited twice yesterday... and we think she may be gagging on some mucus. SO we are going to get the cough assist device back on once a day, and suction when she needs it. We haven't had to suction her for about 2 weeks, so it's kind of a bummer that she's congested again. We have been all over town the past couple of weeks enjoying good health, good weather, and good friends, but I'm thinking we're going to have to shut it down until after surgery. We had planned on keeping Lyla home from activities starting 2 weeks before surgery, but it looks like we're going to have to start a few days sooner.

If you could pray that both girls would get rid of whatever little bugs they have, I would greatly appreciate it.

I also want to say THANK YOU to you amazing people I have met through our blog, contacts with friends, facebook, everywhere. Just this past week the girls and I had lunch with a beautiful mom and her 5 month old daughter who also had a lethal prenatal diagnosis. It was so encouraging to talk to her about life with our kiddos, future pregnancies, our families, God's amazing provision, etc. A good friend from church helped me make hats for post-surgery Evie (she did most of the work!), and I received a box in the mail from a blog-friend that I haven't even met who hand knitted a blanket and hats for Evie also. I can't express in words how thankful I am for all of you.

I sincerely Love you all, and feel blessed to know you.
We took pictures of the girls swimming this weekend, I will get them uploaded and on here as soon as I can!
Lindsey

Cemetary song... and the man...

Hi Friends (:

.

I've been kind of in limbo lately. I'll be honest, I've been feeling sorry for myself, and I should be ashamed. I feel like I spent most of last summer preparing for Evie's birth, and when they moved Evie's surgery to August 6th I didn't want to spend this whole summer thinking about surgery. Last summer we were picking dates to be induced... this summer we are picking dates for surgery. I really don't think about it all the time, but it's like a little dark cloud following me around, letting Satan bother me when I just don't need it. and I let it get to me.

.

One of my Bible study teachers a while ago encouraged us to underline passages that really speak to us, and date them. I found this one a couple of nights ago, dated 8-8-09 "That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great glory that will last forever! So we don't look at the troubles we can see right now, rather we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever" 2 Corinthians 4:16-18
.

Those were words I was clinging to 6 weeks before Evie was born... 6 weeks before I thought I was going to have to give her to the Lord. I have been spending some time with friends who have special kids, and a lot of them blog. It has been amazing to read their birth stories, but it challenged me to go back and read my own. I'll be honest, I avoid it. I never want to lose the sense of reliance I had on Jesus during the walk through the valley I was in at that time, but I don't necessarily want to relive it either. Honestly, I should read it every day. It would revamp my priorities, expose my faults, and refuel my desire to know Jesus more. and I would definitely stop feeling sorry for myself. I have been blessed more in the past year than some people experience in a lifetime.

.

When I was in my car tonight, I put in a Coldplay song that I used to listen to when we would go to the cemetery to spend some time with Evie's doorway to heaven. I will put it as the first song on my playlist. It is a little plot we had reserved for her next to my great grandparents, where John and I could eventually be buried. It is a beautiful green hill, where we sat, thought about Eve, and breathed in the sweet summer air. I would dream about meeting her, and the time we would have together, and I would pray that we would have lots of it. I love the lyrics that say "for you I'd wait, till kingdom come, until my days, my days are done. Just say you'll come and set me free, just say you'll wait... you'll wait for me" I imagined myself waiting for Evie, and she waiting for me. One day being set free to get to know her if we didn't get much time.

.

So in closing, I just want to say Thank you Jesus. Thank you for healing my baby girl. Thank you for giving me the strength to survive 5 months of uncertainty. I'll be honest, when I say I don't know how we did it, I do. You promised we would run and not grow weary, we would walk and not faint, and you gave us the strength to give you our daughters future. Thank you for every minute, of every hour, of every day that I have to love both of my girls, to snuddle in our bed, to kiss their faces, to tickle their toe-toes. To you be the GLORY forever and ever. Amen.

...

Oh wait a second, I'm not done (:

.

I have been reading some fabulous Father's Day posts, and words just can't do justice to the amazing father that John is. I have a few pictures from Evie's birth-day that spell it out pretty well.

Eves first few minutes

Happy Belated Father's Day to the man of my dreams. You have never been anything but proud of our girls, differently abled or not. You are encouraging, supportive, and can make any girl feel like the only woman on the planet. I adore you because I have never felt like you wanted me to be anyone but exactly who I am, and I know our girls will grow up to be confident young women for the same reason. You truly are the best. We LOVE YOU! Lyla, Evie, and mom.

Results and Surgery Update

Hi Friends!

Got a call yesterday afternoon that Evie's CT Scan is unchanged from her last one, meaning her brain pressure hasn't increased at all... PRAISE GOD!

Got a second call this morning, that they are moving Evie's surgery back to July 16th. That is exactly what I was praying for, since John already has his schedule rearranged to have the 6 days following surgery off. Woo hoo! That gives us 3 weeks and 2 days.

I have had a few other things weighing on my mind this morning, but until I get my house cleaned up and my kids napping they are going to have to wait (:

Love you friends! Thanks for praying!
Linds, Ly & Eve

adopted... (:

Hi Friends (:
.

Evie, Lyla, and I made some new friends today! A while ago I got an email from a friend of a friend who had been reading my blog through her pregnancy with her 2nd daughter who has Down's Syndrome. She sent me a link to her blog, and I have been following them for the past few months. Her older daughter is just weeks younger than Lyla, and her younger daughter is a few months younger than Evie.
.

A few days ago she sent me a quick email to let me know that a few moms from the Omaha Down Syndrome Parent's Network were having a little playdate this morning, and we were welcome to come. Why not! I wasn't sure how well we would fit into a group who already knew each other, and whose kids were all similar, but it was just fabulous. These women all have kids in Early Intervention (physical, occupational, speech therapy, etc), a laundry list of doctors, medical scares, and hospitalizations. It was so nice to be able to talk about Evie, without feeling like I was speaking a foreign language.
.

The ODSPN meets once a month for coffee, and I am considering joining. I will have to check out the logistics beforehand... since I technically don't have a kid with Down's Syndrome... but since Evie and I don't really fit into a "group" right now I feel so blessed that we happen to be invited to one. It takes a long time to connect with people, and we got to hang with 5 beautiful families who are in a very similar situation to ours.
.

I feel like we've been adopted (:

.

Here are a few pics from our playdate:

.

taking pics of the kiddies

Evie getting some love

Wesley, Evie, and Macy hanging out
could they be any cuter?

Evie liked all of the attention she got for being the "new kid" (:

Thanks for the invitation new friends! It was a wonderful way to spend a Monday morning.

AND yes, we got Evie's CT scan done this afternoon... I should know the results tomorrow morning. It took us 3 hours to get a 5 minute scan (long story that I'm too tired to tell!) but it's done and at Dr. Puccioni's office ready for him to read. I will update when we know anything about that or the surgery date.

Love you friends! Thanks for reading (:

photos by Brian Lehmann http://www.brianlehmann.com/

take it off the calendar...

Hi Friends,

I got a call on Friday, that July 16th isn't going to work for Dr. Puccioni, Evie's neurosurgeon, to do her surgery. They would like to move it to August 6th. I called his PA because I am concerned about the pressure in Evie's head building, so we are going to have a follow up CT scan done tomorrow to make sure she's okay. She hasn't done one since April 27th, so it seems only appropriate that we check to see how things are progressing. She also said that Dr. Puccioni will be back in the office on Tuesday, and they will try to get Evie scheduled sooner.

I am pretty anxious about the whole thing... August 6th seems so far away, and Evie's soft spot sure looks large and pointed. When we met with Dr. Puccioni the first time we left with the impression that Evie's surgery would be scheduled for 2 to 4 weeks after the craniofacial clinic... which was nearly 4 weeks ago.

Will you pray with me that 1. Evie's brain pressure hasn't increased over the past few months or done any damage, 2. That we can get her surgery scheduled and confirmed, and 3. That John can get his schedule rearranged around the new date? (he already cleared july 16-21!)

Thanks friends (: Love you.

put it on the calendar...

Hi Friends!

Evie's surgery is on the schedule for July 16th, at 8am. Got the call yesterday that it is confirmed. They said we will be there 3-5 days, so I am going to plan on 4-6 (:

Thanks for praying, busy day, will update more later!

Lindsey

Tenative Date!

Hi Friends!

Evie's tenative surgery date is July 16th (: I find out for sure on Monday. I am actually relieved that we have 5 weeks to prepare, get John's work schedule switched around a little, pray, relax, play, pray, relax, and pray some more.

Good night friends (: Love you.

APPROVED!

Stamp us: We're approved for surgery!!!!!!!!!

I called this morning to ask how long the physician review was going to take and they told me that we are already approved for surgery... AND to go out of network... so we can go ahead and schedule, horray!!!!!!!!!!

When I got off the phone I felt like I could hear God right in front of me saying "I will take care of you... I'll let you throw your temper tantrum... and I'll still take care of it." Calm down lady!

So after a lot of worry and wasted energy, hopefully I'm smart enough to pray more and worry less. Remind me of that when surgery gets closer will ya!?

Love you friends, thank you for loving us!

It's okay.

Hi Friends,

Insurance did not pass Evie's surgery over the phone. It's okay. It was a long shot, but it was worth spending some time with God asking him to answer our prayers, and thanking Him that he truly can do anything.

UNMC HR is meeting next Tuesday the 15th, to decide if Evie can go "out of network" and have her surgery done at Children's. Big prayer request. That gives us 8 days to pray. Join me on my knees friends, I need you!

Lastly, I feel like I'm stuck between a rock and a hard place. I'll be honest, when we left the neurosurgeons office at the end of May, and scheduled our Cranio-Facial Clinic visit, I totally got the impression that Evie would be having surgery this week. Now we are just starting the approval process with insurance, to prove that her surgery is "medically necessary"... and begging UNMC to let us go out of network. It's sounding like 4-6 weeks. It blows my mind that a nationally known neurosurgeon can examine Evie, look over her scans, say that she absolutely needs surgery... yet we need a "medical review board" (whatever that is) who has never examined her and hasn't seen her scans to deem it medically necessary. I just want to send them a video of her sweet face and ask them to please take care of my baby.

I feel like I am trying to decide whether I should:
(a) assume that these setbacks are all part of God's plan for Evie, and that as her mom I need to be patient because all things will get passed at a time that is good for Eve... or
(b) be more demanding and advocate as her mom that my daughter NEEDS surgery... NOW... and pool my resources to get things moving. But I don't want to take things out of God's hands, he knows when and how surgery will go.

I feel like right now I have found a happy medium between the two by calling insurance every other day to see how things are going... giving them any pertinent information, and requesting that they call me with updates, but sometimes it just doesn't feel like enough. Will you pray for me that I can know with certainty exactly what to do? I am so so so afraid that Evie will take a turn for the worst, and this surgery will become an emergency situation... which isn't good for anyone involved. Even YOU insurance! (:

Thanks friends, I appreciate you!
Love from the Elsaessers.

PRAYER!

Hi Friends,

Just got off the phone with the Plastic Surgeon's office... they are going to call our insurance company soon and ask for Approval of Evie's surgery over the phone. They said that they usually have to send in the letter and medical notes to be reviewed by a team (which takes a few weeks), but wouldn't it be amazing if they just approved it over the phone?? Then we could get everything scheduled. Let's pray that it gets approved!

Thanks, Love you friends.

nothing (:

Has it been a week already!? That went fast!


I feel like progress is the best way to describe Evie's lately... it's as if she has slowly taken a giant step in the right direction over the past couple of weeks. Physically she is getting so much stronger, she is rolling over more gracefully, and I can hold her under her armpits while she holds her head up. I used to have to hold the outside of her arms, and kind of balance her head on her shoulders, but her neck strength is improving so much. Pretty soon I'll be toting her around on my hip, and she'll have enough strength to hold herself up (: She is eating 6 ounce bottles at every feeding instead of 4, and getting an upset stomach less often. We only had to suction her nose and mouth once today, which is a huge improvement. We have been doing rice cereal (which she is totally not interested in...) and trying some "puffs," which she likes. I wish I could capture her joy somehow and post it for you all to see, she truly lights up a room.


I want to say THANK YOU to all of Evie's faithful prayer warriors and friends who said "hi" at Kelsey's wedding this weekend. I am continually amazed at how many people love her, and it blesses me as a mom that so many people love my girls. It was so nice of people that I have never met to introduce themselves and let me know they are praying for Eve. It is overwhelmingly wonderful. beautiful. awesome. kind. loving. Thank you!

Now to explain the title of the post... "nothing"... as many of you know, my little sis got married this weekend. It was a beautiful wedding, and her new family is absolutely fabulous. It's always these big gatherings where Evie gets a few stares, mostly because I'm carrying an oxygen tank around in a backpack...normal for us. So a lady in the cake line so very un-tactfully asked me "what's WRONG with your baby???" and without thinking I smiled and said "nothing." She stared at me for a few more seconds, and after realizing I wasn't going to indulge her, walked away. It was the simplest and most honest answer I have ever had to that question (this wasn't the first time), and boy did it feel good to say it. It is so true friends, there is absolutely nothing wrong with my baby girl. She is exactly how God intended her to be, and her life is going to continue to be a testimony of God's goodness, faithfulness, and love.

Congratulations to the new Mr. and Mrs.!

Evie working on her "reaching" (:

Lyla at the reception

time out for some kisses (:

congo line!

and we're out.

Great wedding mom and dad!!! Your hard work really paid off (: Love you!

Photos by Brian Lehmann http://www.brianlehmann.com/