Wednesday, September 29, 2010
I found a website through a friend called blog2print, and I'm going to print Evie's blog into a book for a keepsake for her (and us!). It prints "comments" along with my posts... so I thought I'd take this opportunity to let you all leave a note for her before we print this first book, her first YEAR! I am going to wait at least a week before I print, so if you would like, do so before Friday October 8th!
All you have to do is click on "Leave a Comment" below (:
Love you friends! You are great!
Tuesday, September 28, 2010
Yes, today was a monumental day... I left Evie in the nursery. We had Tuesday morning Women's Bible study and I've been leading a discussion group for the past few weeks, and decided since Evie felt good and there are only three other babies in there, to give it a go. I'm pretty sure that one of the workers watched the 3 other kids while the second watched Evie (: I was a little frazzled before I left, and told them not to let Eve cry too hard because she would get congested and then sometimes she can't breathe. That was probably a little harsh, but when Evie starts to struggle, she goes down fast. So I guess it's better to be overly cautious! (: Anyway, they did a fantastic job, THANKS ladies!
When I got upstairs where the leaders pray before study, they kind of collectively noticed I didn't have Evie with me to which I had to quickly respond "Don't talk about it!" before a few hot tears rolled down my face. I honestly can't believe that something as small as leaving her for two hours was so hard... but I've been with her every day, every night, every hospital stay, every code, every blood draw, every poke, every scare, every everything for the past year. When I'm not holding her she typically looks around until she can find me, and even when her eyes were swollen shut after surgery in July she would wave her little arm until she felt me beside her. So the thought of her looking around and not being able to find me makes my heart hurt a little. But she also needs to know that she is going to be okay without me eventually so hopefully this will ease her into that.
So we made it through our first two hours apart, with the exception of the times John watches her, and I'll be honest, I'm still a little sad about it. Maybe it's because she's growing up. Maybe it's because she was the only 1 year old in the newborn/baby room (instead of the crawler or walker rooms). Maybe it's because I felt distant from her for the first time by choice. Maybe I'm just not ready. We'll see.
Love you friends (:
Wednesday, September 22, 2010
Well here they are... birthday pics! I want to give a huge THANK YOU to Brian Lehmann... who has been following us since February to develop a photo story about Evie's first year. He has been there to document many occasions throughout our journey that I wouldn't have otherwise had pictures of, and has been so generous in sharing memories with us. Brian, it is an honor for us to call you "friend."
my dear friend Patti helped me make these awesome cupcakes...
And our friend Staci took a few portraits for us (:
yep she's that cute!
Monday, September 20, 2010
Sunday, September 19, 2010
Back to you. (: Early in the summer we started to see signs that you were going to need "decompression" surgery on your head. This surgery was very trying on me. It strongly reminded me of the summer of 2009, because we were constantly waiting. Waiting for appointments, waiting for scan results, waiting for insurance, waiting for surgery. The day of your surgery also reminded me of the day you were born. It was necessary, exciting, and frightening all at once. Playing in the pre-op area of the surgery room was so nerve-wracking. I had no idea what you would look like post-op. It was so scary to send the face that I loved so much into surgery, not knowing what the end result would be. After they took you back to surgery, all I wanted to think about was what was happening, and what we needed to be praying for.
Surgery and post-op were finally done, and they came and got us to ride up the elevator to the PICU with you. You... looked... beautiful... Out of this world beautiful. I couldn't wait to lay next to your little body again. Over the next few days your face swelled so much you couldn't open your eyes. When we had guests in your room you would wake up, wave your arms around until you felt me, and fall back asleep. We went home after 6 days in the hospital, where you changed more lives. Because you LIVE, and because God LIVES.
And this fall, we have finally gotten into the swing of things. Bible study, Pre-school, Gymnastics, etc. It still blows my mind how many people you have touched, and how proud I am to be your mom. Evie, it goes without saying, you have changed my life and so many others in this one year. One Year. Wow. (:
Nana and Papa Steve bought you a book for you birthday, called "On the Night You Were Born" and I think it's only appropriate to post a few pages:
the moon smiled with such wonder
For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again...
I love you Evie Jayne. To think of life without you brings tears to my eyes, and breaks my heart. You and your sister have enriched my life with more love than some people experience in a lifetime.
Love love love love love you,
Wednesday, September 15, 2010
February was definitely a "down" on our roller coaster ride of a year. In January we tried to get you vaccinated for RSV, but the exact minute insurance called to inform me that we were denied, we were sitting in Dr. Pat's office with a positive RSV test.
We decided to admit you to the hospital overnight to monitor your breathing, and that night you were urgently moved to the PICU and intubated. Again, you just couldn't breathe. For the next 8 days you were breathing with assistance from a ventilator, sedated so you didn't pull the tube out of your mouth, or feel uncomfortable. You didn't hardly move for 8 days. I have never felt more hopeless and horrible. Since you couldn't move your body, your little eyes started to swell along with your arms. We spent a lot of the day talking to you, putting ice on you face, and laying with you in your crib. For a while there was no end in sight, so we got a hotel room at the hospital hotel. Your dad and I traded off sleeping in your room, while the other slept with Ly in the hotel room. After the 8 days being ventilated we stayed 6 more days to help you gain some strength, and to monitor your breathing. Then we went home.... for one day (:
moments after extubation (:
You dealt with some serious drug withdrawal from the heavy sedation and pain meds you were on, so they gave you some Ativan to help you relax. Unfortunately instead of relaxing you decided to stop breathing periodically into a daze. With a little stimulation from us (shouting your name and breathing in your face - sorry!) you would "come to" but we were re-admitted and we discovered that seizures were causing your apnea. You had a CT Scan to check your brain pressure on one of your final days, and when asked by one of my dear hospital friends what the scan was for I replied "to see if she needs brain surgery" and couldn't help but laugh out loud at how ridiculous that sounded after the few weeks we had just gone through. We'll fast forward to that in our next post (:
After a few EEGS and adjusting of you seizure medication we pulled through a final week in the ICU and were home for good. I couldn't be more impressed with the ICU Doctors and nurses that we met, and it is a blessing to know them.
Sunday, September 12, 2010
I realize if I'm going to have time to blog through last year before your birthday next weekend, I'm going to have to consolidate a little!
Last fall was a busy one. About two weeks after we brought you home from the hospital we thought you were having seizures. It was a Friday night and you were having some weird body movements, with no explanation. We took you to the ER, and after talking to a few neurologists, they told us that babies do weird things. Really? Well okay then! Sunday the spells were worse so we took you back... and we were right. In an effort to dialogue what you were doing, we grabbed the video camera so we could accurately describe it this time. The physicians admitted you immediately, and the video we took may be used in future research and teachings on severe infantile HPP with seizures.
This was our first hospital stay at Children's, and it was a scary one. You had many EEGS, a stay in the PICU, a slew of tests, and were unresponsive for a 24 hour period because of the seizures you had been having. During this visit Dr. Lutz came by several times and told us he may have a diagnosis for your "disease." He explained hypophosphatasia, the symptoms, the clinical presentations, and that he remembered hearing about a treatment at a rare diseases conference of some sort he had been to. We read through the information, and although thorough, the prognosis was not great. Infants who have HPP with seizures that do not undergo treatment have a 50% mortality rate by 18 months... and 50% was not going to fly in our book. Within that week we found the treatment, began the initial process for getting started, and had you on vitamin B6 for your seizures. This was our first admission where I realized how amazing your pediatrician, neurologist, and geneticist were. When the three of them were gathered in your room at 2am on a week night, I knew God had provided us with an amazingly brilliant and caring group of individuals. I also realized how amazing your dad is. When we found out it could be a few weeks before we could get you started with treatment in Nebraska, he was looking for flights and lodging in Massachusetts, where the drug company is based. After a few phone calls they assured us it would be better to stay home, although you are so blessed to have a dad willing to relocate for 6 months to get you the care you need (:
During the months of October and November we closely monitored your blood and urine levels with bi-weekly visits to the pediatrician. You quickly became a celebrity because... well you are so dang cute! (: The first week of December we started the clinical trial (treatment). Because there is no treatment already approved by the FDA and this treatment had only produced positive results with no negative side effects we decided it was the best way to go. Monday, Wednesday, and Friday for these 3 months we would go to the Med Center to their LIED treatment center where you would receive your injection, and we would stay for 2 hours of monitoring. It ended up taking at least 9-10 hours a week when all was said and done with check-in, treatment, and check-out. I honestly didn't mind. It was nice to have you in a safe place with wonderful nursing care, consistent treatment, intense monitoring, cookies and fountain soda (: Your dad would take Lyla home after the first hour and we would have a few hours to spend together. It's funny to look back and think about all of the marvelous things I thought I could accomplish in those hours, but all we ever accomplished was snuggling and making friends in the treatment center. Every time we checked in there was a waiting room full of patients, mostly there for cancer or transplant treatments. It was very healthy for me to take a break from the fast paced outside world and get to know people who were really in need of some extra compassion and sometimes just a listening ear.
In January we were driving home from treatment one afternoon, you were upset in the car and suddenly there was an eerie silence. I knew something was wrong so I pulled into the nearest parking lot to find you not breathing in the back seat. I somehow called 911 and got you inside a furniture store. I started CPR at the advice of the emergency hotline. You (and I) were so scared. I'll never forget the look in your eyes when I could tell you couldn't get your next breath. We had lights and sirens on the way to the hospital in the ambulance, and you were slowly breathing by the time we got there. After another week stay, you failed the car-seat test... the seat put too much pressure on your lungs, and with upper airway congestion you just couldn't breathe. In that same visit you "coded" during an upper GI test (more CPR), while checking your digestion tract. The tube they put down into you belly somehow hit a nerve that responded in the plummeting of your vital signs.
My dearest Eve, I will never take a day with you for granted. When your dad and I got married we had a pretty easy going life, and I thought that being comfortable was pretty important. I knew God would take care of me through the good times and bad, I just didn't know how much of either he was going to throw our way. It is His will for you to be here with us sweet girl, and you have made me a more compassionate, loving, thoughtful human being. Your life has changed my perspective.
I love love love you,
Thursday, September 9, 2010
I took Lyla to her first official night of Awana last night, and while catching up with some ladies we were talking about Evie's upcoming birthday party. One asked me what the past year was like and I replied "it's like a blur..." and it is. Honestly, it has been a humbling, challenging, life altering, blessed year... but I feel like I haven't taken enough time to look back. I remember reading another woman's blog before Evie was born, and her saying that if she "was going to walk through a valley of this magnitude, she would not walk out unchanged." It would obviously be impossible to walk through this experience unchanged, but I truly desired to change for the better. So in this next week leading up to Evie's birthday, I want to let her know how her first year has truly, deeply changed me, starting in September.
My dearest sweet Eve,
Today I was in an appointment with your dad and he said "last year today, it was 9/9/09," and my heart sunk a little. Why? Well, because that meant it that this time last year was 10 days before you were going to be born. It was the day I went to a funeral in Lincoln for my dear friend's beautiful daughter who was only a few months old, and the next day was my final appointment with our doc before we would deliver you into the world. We didn't know how your "birth" day would go, or the days following. When we asked at every appointment, it was continually thought that we would have moments with you. There was a "rare" chance we would take you home. About this time last year I had finally found the peace I was searching for all summer. I knew that any time we didn't have together here, we would spend walking the streets of heaven together, it was the only thing that made it bearable.
The night before your birth we invited our friends to come up to the hospital to hang out. I couldn't stand the thought of being up at the hospital alone or with just a few family members, I wanted to celebrate the weekend. Lyla and her friend Morgan were sitting in bed with me eating potato chips while I was having contractions (: It was a beautiful distraction, and reminder that life is good, and God gives us everything we need for the moments we are in.
In the beginning of my pregnancy I needed time to process, but by your birthday I couldn't wait to hold you. For better or for worse I couldn't wait to have you in my arms. To hold your little warm body next to me. To see your face, hear your cry, to tell you all of the ways I loved you. When you were born they immediately laid you on my chest and I saw your beautiful unbroken body. They had prepared us for the worst, but we had passed the first test of delivery, and I couldn't have been more proud of how resiliant you were. If only I knew how brave you would be through the coming year. You were born September 19, at 6:37pm, and after meeting so many of our family members your dad and I stayed up all night with you. We took turns holding you, and finally laid you between us to sleep for a while. You had some hard breathing at times, and we didn't know exactly what that meant. It was hard to watch you struggle, but it was wonderful just to be with you.
Finally the nurses took you out so we could close our eyes for a few moments. They promised us that if you started to struggle they would immediately wake us up to be with you. When they brought you back a few hours later your eyes were wide open and you were nearly smiling. Each shift the nurses from the previous day would return in tears because you were still with us. They even took our camera during the night to take their own pictures with you. (:
The next day you had x-rays, and Dr. Pat called me from his cabin with the results... it sounded something like this "Hi Lindsey! I g... ..e re...ults .... the x-ray... Th... ..iagnosis is ..ot lif.... reatenening" Seriously Dr. Pat! (: After about a 20 minute phone call with about 70% reception and a train going by Dr. Pats cabin, I got the message. You were going to LIVE. It was a "could I seriously be this blessed" moment.
Sunday you had more than 50 visitors. Yes, more than 50. I'll be honest, after not sleeping for three days I was a little more than exhausted, but I will never forget the love that was poured out on you that day. And I will be forever grateful for everyone who loved us and cared for us the few days following.
On Monday we saw a few doctors, and on Tuesday dad went home to get the carseat. I never gave up hope that you would come home my sweet girl, but I knew I couldn't drive home with an empty car seat in my car. So we took your last hospital pictures with your sis, packed you up, and drove about 30 miles per hour the whole way home. (:
We had two routine doctor's appointments with you the following week and spent Friday celebrating Evie day. If it was God's will for you to join him in Heaven, that Friday the 25th would have been the day we would have laid you to rest. The thought of those preparations still break my heart, I can barely even type the words, or drive past the cemetary. Instead, on Friday the 25th, we returned the dress that I had bought, and bought a fun outfit to wear to church that Sunday and celebrate the healing hand of God and the miracles that He, and only He can provide. We had lunch at Kona Grill with Nana, Aunt Kirst, Grandma Dellie, and Lyla.
At your most recent appointment with Dr. Lutz a few weeks ago, you had your pacifier in your mouth and he said "she's smiling with her eyes." I think that is the best description of September 2009. Through your eyes I saw God smiling, taking care of you, and healing my heart from a summer of grieving. Your life has allowed a hurting heart to heal under the hand of God. Evie Jayne, you have changed my heart.
I love you sweet girl, more than the sun and the moon.
Wednesday, September 8, 2010
We made it back.... and it was fun! We had an awesome weekend, drove half way to Keystone last Thursday night and made it there on Friday. The boys had "boy day" (white water rafting) on Saturday, so the girls went for a long walk on the keystone trails, and sat in the hot tub looking out at the mountains. It doesn't get more beautiful than that! On Sunday we went to the Dillon Amphitheater in the morning for church overlooking Dillon Lake and the wedding was that night, and it was absolutely gorgeous. We took two gondolas into the mountains, Lyla thought it was the best thing ever (: Evie had a scare after our first ride, where her oxygen dropped and her pulse was racing, but we think her monitor may have just come off of her foot funny. She likes to make sure we're paying attention! (:
OKAY I was going to post pics, but my computer isn't downloading! I promise to post tomorrow. Sorry if you have been checking for updates, we have been so busy I haven't even gotten all of our vacation clothes put away!
Love you friends, thanks for checking in, and look for pics soon!
Wednesday, September 1, 2010
September 19th (YES her actual Birthday!)
1-3pm or however long people stay (:
Against all odds, Evie is turning one!
We are having an open house to celebrate the JOY of one year! I am constantly blown away by how many e-mails, facebooks, phone calls, and gifts we receive from people who LOVE Evie, some who have met her, and many who haven't. So this is your invitation to come, have some cake, and celebrate our sweet girl!
Please feel free to bring your kids, and anyone else along too!
I'm not going to post our address... since this is a public webiste... but please shoot me an email LindseyLE@gmail.com and I'll get it to you.
Love you friends, and hope to see you ALL September 19th! Woo hoo!