Monday, November 7, 2016

SDR • Discharged!

Day 5 finally arrived! Hallelujah. 

We got a good amount of sleep, since she had no wires and wouldn't likely be vomiting I was able to sleep in bed with her. We are used to co-sleeping so this felt like a little slice of heaven. (Let's just say I'm gonna need a massage after the last 5 nights) but it's alllllll worth it! 

Daddy arrived before we woke up.  As soon as sweet Fin opened her eyes she was seemingly trying to push another little poopoo out.  So I comforted her through.  I debated going to shower and get ready for her grand exit this afternoon, but they moved up her therapy from 10 to 9:30am and everyone says you get discharged super quick after therapy. 

The nurse came in and discussed with us that the take home prescriptions weren't included in what we already paid, so we fumbled around to find exact change.   We paid for it. Then it was time to go to therapy! Had this girl dressed and ready to go! 

We went up and she was so excited to play!  I couldn't believe the difference between yesterday and today. Huge. 
She crawled around, she's noticeable weaker, but still so motivated! It was a quick hour!  We left therapy and went back to our room, the discharge papers were ready to go! We got them in hand and headed out! Woohoo! 

We are discharged! 

We went straight to the hotel! Finley remembered how much fun she had in the room, and got straight to playing. It felt so weird, like I blinked and the hospital was over. But then it felt like it had been years. Very surreal.

She started getting sleepy, so we put her in bed.  She took a nap and I got to take a shower! 

Afterwards I just snuggled her for like 2 hours. It was awesome.

We weren't sure if she was gonna wake up or be down for the night. It was only 5 and that just seemed like way too early. She woke up and was ready to go, we thought a nice little walk around would be the perfect outting for her (and us). 

I can't believe we are on the outside! Lol. So so amazing. We asked Fin what she wanted for her meal and she said, "PIZZA!" We found a yummy pizza place and enjoyed it outside so that she could stay in her stroller. 

When we were done we asked her what she wanted next, and she said "ICE CREAM!" So that's what we went and got. In St. Louis there is no shortage of desert places. We approached one and it looked super rad, so we went in. 

They were so sweet they gave Finley her own little scoop with sprinkles! She was in heaven! 

We are to only have her siting up for a couple hours at a time, so we took her back to the room and snuggled our girl for the rest of the night. 

We leave tomorrow afternoon, but I decided to leave all the packing for the morning. This was a moment I didn't want to miss.  

Tuesday, November 1, 2016

Our Open Adoption Interview

As you may have already discovered, I'm the proud <adoptive> mother to my sweet little Finley.  I know, she looks just like us.  What you may not know is that we are in a very open-adoption with her Birth Family and super close with her incredible Birthmother Lex, whom we endearingly call "Leelee." I've written all about how our adoption came about in previous posts, should you find yourself curious there's quite a few that will answer some of the more adoptive-mom related questions.  Over the years I've had so many people ask me the same questions about her, so I thought it would be nice to have one blog to reference all the Birthmom topics pertaining to our adoption.  It was so interesting for me to discuss our Adoption story from Lex's  perspective.  I love that we can be so open with eachother, I love that we are both healthy enough to do so.

Without further ado... here is the chat I had with my baby mama. 

Walk me through what it was like discovering you were pregnant at 19.
At first I didn't believe it, I was way in denial!  I was taking birth control so I never got a period.  One morning my mom said it looked like I was pregnant, which I said, "no no.. I just gained some weight." Then enough people were suggesting I might be pregnant, so I finally took a test (or two) and they came out instantly positive.  I was 4 months along when I found out.  I don't remember being upset, I was happy, but I was scared to tell my parents.  I wanted to tell my boyfriend in person, and coincidently the next time I saw him was on April 1st. I had to tell him, "this is not an April fools joke." He was upset. He stuck by my side through the rest of my pregnancy and even a little while after until my grief was better. 

Did you feel as if you had a choice to keep the baby or not? 
  I felt Iike I had no choice at all. My mom just kept saying, "you need to get your life together first you can't raise a baby right now."  I remember thinking, "even if i wanted to keep her, I couldn't."

I know there was talk about your older brother possibly raising her? How did that go? 
I remember we were thinking of letting my brother keep her and everyone seemed to all loved the idea. He wasn't going to adopt her, he was just going to be her legal guardian and then potentially when her Birthfather and I were more stable we would take care of her. My mom strongly suggested that we meet with an attorney and discuss what this would look like, so we did. The attorney referred us to a family therapist. At one of the meetings, both of our families came. We discussed that my brother was working all the time and that he would have no time to raise her. He is a single guy, and even though he has a great job, it just wouldn't have been the best thing for my baby. I knew that I didn't want a nanny to raise her, because her birthfather and I both wanted her to have a mother and father raising her. That was what she deserved.

So, then what happened?
 The attorney showed us several books of hopeful adoptive parents.  I remember going through all of them and yours caught my eye.  You just looked like a fun-loving woman and to be honest, I thought everyone's booklets were either boring or I just didn't like what they had to say about themselves. I kept getting drawn back to yours.  You were my first choice, and her Birthfather picked a different couple for his first choice.  I'm actually not sure why his choice couple was called first.  I was relieved when we were told that they weren't available to adopt our baby, because I don't think I was all that happy about that pick.  I know that I wouldn't have had a relationship like you and I have. I love our relationship.

What were your fears before you signed the papers? Did you get to choose if the adoption was open or not? 
 I think I can remember telling the lady that I specifically wanted an open adoption. I knew I wanted to be able to  see her grow up.  I feel like as a Birth parent, if I chose to have it closed then my child might feel like I wanted nothing to do with her and deep down inside she might feel unloved. I never wanted Finley to feel like that- EVER- that was definitely a fear of mine. I wanted her to know I was still there for her if she ever needs a favor or anything. I'm always going to be there for her. I had a little bit of worry before signing the papers, but I had trust in you guys.  I believed your promise to me, that you would openly communicate with me and allow me visits.

What were your feelings right after the baby went home with us? 
The day she went home with you was a really hard day. Really hard. There was lots of crying, but I knew Finley would have a better life with you.  I just kept focusing on the positive and looked forward to visits. 

Was it hard waiting for updates and visits in the beginning? 
I LOVED getting text updates! I remember getting really excited every time you sent me a picture, if I was at her birth-father's house I would run to {her birth-grandmother} Kathy's room yelling, "we got pictures!" It was the highlight of our day. Waiting for a visit was really hard. It really was, but you learn to move forward. I do remember there were times where you said you were coming, but then you had to cancel. I would get really angry, upset, and end up crying my eyes out on an off for a couple days, it was like my heart broke all over again. But like I said, you move forward and it gets easier as the days go by. You just sort of become used to it and knowing that she was getting the life she deserved, honestly helped.

How did you feel during those first few visits?
I remember my heart being just... happy. I was really excited at visits. Of course it was sad when they were over, and it was really hard the very first time you left- because I knew she wasnt coming home with me. That was the hardest thing I've ever gone through. I remember though, that I was happy that I even got to see her at all, I know some birth moms aren't that fortunate. It was like an emotional rollercoaster, but watching you with her and her being so loved made it all worth it.

How did you feel when you first learned of Finley's Cerebral Palsy diagnosis?
I remember you telling me that she had CP, I'll never forget that moment. I just started crying because I thought it was my fault. Honestly, even to this day I still blame myself - I think its a feeling I will always struggle with. I feel like it's my fault, I get teary eyed whenever I talk about it. I always wonder if there was something I could have done better when I was pregnant. Like, "could I have prevented it?" Even though you reassure me often that it's not my fault, I still feel like it is.

Did you ever have regrets about your decision to place?
I have never regretted my decision. I'm happy she has the life she has now the life I couldn't give her, the one she deserves.  

I remember one day when you were visiting the NICU, you were crying and quietly saying, "I can't do this," and Kathy hugged you and said, "you can and you will." What were you referring to?
I said that? Umm? I don't remember saying that at all. I remember one of the things I wanted most was to see her and that's why I chose to have an open-adoption, but I was probably just really emotional that day. I was never going to back out of my decision to place. I had no choice. My mom said, "that's what you're doing." So thats what I did. 
What brings you peace in your decision?
I think what's brought me the most peace is being able to watch Finley grow up.  Experiencing her hit every milestone... even if it's from behind the screen, seeing her happy is what gives me peace.  Also, just knowing that she is so loved by everyone.

How do you feel about my choice to be so open with our journey?
I think it's great! I love that you're public because I get to see all of the love and support Finley gets! It is so wonderful to see how many people genuinely care about her, it's amazing.

Do you feel support from others about your decision to place?
Everyone has always been super supportive. I've never gotten a negative response. I always have friends asking to see pictures of Fin and they always ask how she's doing. When the whole adoption first took place it was really hard to talk about her, I would start crying for the fear of a negative response. I never got one, so it's much easier now to talk about her. I'm a proud birthmother.

How do you feel about your open adoption? 
I love my open adoption.  I think it's great for anyone who can handle it, you just have to be positive and have trust in the parents you choose to place your baby with. I think it's great for the child, they have a few more parents to love them. They'll never have to think, "Why am I not wanted? Why didn't she want to keep me or ever visit me?" She will know I love her, because I will get to tell her. 

What do you want people to know about Birthmoms? 
I want people to know that we LOVE our child.  That we will love the child we've placed the same as the future children we raise.

Are you proud of yourself for choosing to place Fin?
I am. I think she has the best life possible, it's only getting better from here on out. If she was with me, her life would be totally different. I know you made it so that she could have this surgery and the best therapies possible, and I know she'll walk independently because of you guys.

Do you plan to have more children?
I do plan to have more children, but I want to wait until I'm married and have stable income and home life.  I want to give my kids the best life possible. I hope to have a loving husband, a roof over my head, career, and ultimately a family.

Saturday, October 29, 2016

SDR • Day 4

Not a bad night. I woke up with a definite crick in my neck. But happy to have gotten rest! 

Daddy is up and I'm going to get coffee and breakfast. She was talking up a storm and being hilarious. Very lively. 

We went to our morning therapy at 10:00am.  She was supposed to take oral Tylenol 30 minutes before therapy, but she refused. So we had to give her the other kind. Which was so easy, that's what kind I'm taking home, lol. I put some shorts on her, picked her up and we headed out! 

She loves elevator rides all the sudden! We arrived to morning therapy and our friend Charlotte and her Dad were there. 

So happy to be on the up and up with them! Morning therapy went great!

 I'm astonished by how flat her feet already are. She's going to need lots of stretching and a session of cerial casting, but we notice an immediate difference! It's crazy! She cried when we left, because all she wanted to do was play!

After therapy, we went back up to the zen garden.  Finley loved looking at all the little stone creatures they have around and the butterflies!  It feels like we are just out exploring a park with our girl.  Almost like nothing ever happened. 

They wanted her to rest in-between therapies, so we brought her back to the room and she took a little nap. 

The nurse came in with the medicines and that's how we knew it was time for the 2nd therapy. Hooray!  So we got her in the stroller and headed out for round 2. 

This time she rode a tricycle for the first time ever, and loved every minute of it. The PT said that Fin was actually doing a lot of the work. She was even steering pretty well too. A little while into the 2nd session, the PT looks at us with a smile and says, "She's going to do really well." There it was again, that smile like you guys are gonna have a little ball of energy on your hands. I've seen this expression given among friends, but I've never been given it.  It was great. I cannot wait.

What a happy day.  We left our 2nd session, both breathing iighs of relief.  We took a little spin back up to the zen garden, and then went back to the room. 

Finley was starting to smell and her hair was a ginormous rats nest that I was starting to get really scared of.  Don't get me wrong, I wasn't actually scared, I just would catch a glance of it and think, "oh that's going to be a nightmare to Fin for me to brush it out." 

Our new nurse on this shift was super fun and excellent at distracting Fin.  I asked about bathing her and she said she had all these tricks, "let's do it!" She said all up beat!  I'm so glad she was there, it definitely took 3 of us. Her hair definitely looked worse than it was, and it took her a minute to warm up to the bed bath. 
After we got all of the Mr. Tangles out of her hair, we got her dressed in normal clothes and a fresh diaper. She was literally back to her old self snd then some. An energy ball! 

We played for awhile. She starting acting tired around 6pm (she had only taken that short morning nap) but, in true Finley Fashion she didn't fall asleep until around 10. 

She was gifted a balloon bouquet by YouCaring and I was astonished by her hand eye coordination with both of her hands. She would rotate hands and climb up the balloon string to bring it down to her face. She had never executed anything like this before. 

Which made me emotional.  

I climbed into bed next to her, and we turned on cartoons for her to watch. I just laid there holding her hand daydreaming about the future and trying not to be anxious about the even nearer future, our RV drive accross the country. 

SDR • Day 3

Oh Day 3. 

We were ready for you (or so we thought).  Given the Nature of Day 1, we were confident the worst was behind us. 

We woke up to Daddy arriving, per the usual. No coffee this time because it was 6am and the Starbucks cafe doesn't open until like 8. Ludacris.

This is the morning that Fin is to lose her catheter and epidural + IV fluids. (Yaaaas! Lol.)  They gave us a really strong oral dose of pain reliever to relax her about 30 minutes before the Dr. Came by to remove the epidural.  Great. I handed it to Josh since he seems to be better at getting her to take the oral stuff.  He did. Success! 

When the Dr. Showed up, she wasn't nervous. We log-rolled her over and he pulled it out, the morning nurse came in and pulled out the catheter. Not really a big production, but we distracted her like a mofo! Lol. All the toys and talking. 

She was scheduled for PT in the morning and afternoon.  The morning PT was mostly just them showing me how to get her up off the bed and into the stroller, and vice versa. Nailed it first try. Basically I have to keep her spine as in tact as possible. So more of a scooping her up then picking her up. It's intimidating for sure. 

We got her in the stroller and we were breaking free! It was such a great feeling to have fresh air on our faces! We went straight to the zen garden. It was nice and chilly out there.  Finley was in a pretty great mood, given the circumstances. We ran into our friends, and sweet Charlotte had the biggest smile on her face. Everyone is doing well.  We talked about the last few days and both of our "horror stories" and laughed (nervously) that this day was supposed to be the worst. Welp. It was so far so good. 

We were aloud to have her upright for about an hour, so we got back to the room and rested before afternoon therapy. I took this opportunity to run back to the hotel and get showered and cleaned up! 

She was in the best mood still. Took a nice nap, and then we were up and ready for therapy. 

Therapy went just as we anticipated, lots of tears. But she was so determined to play! So it was okay. 
She seemed to be crying more out of anticipation or fear of pain, rather than actually from being in pain. We played for about an hour and got her to bear some weight on her legs, but she was very very weak. You can tell it took a lot out of her. 

We got her back to bed, and she took a long nap. 

We just couldn't stop loving on her, we were so proud. It's possible we were subconsciously celebrating. If was 5pm and we'd survived with flying colors.  

Our friends stopped by (they drove over FOUR HOURS) to surprise us! It was nice to see some familiar faces and catch up. They brought Fin lots of toys and she had a blast playing until she fell asleep. 

Around 7pm I realized that Finley hadn't pooped yet. Since like Sunday, and it's Thursday. She was complaining of her tummy hurting, but I knew she would be afraid to push and put pressure on her back. She is no stranger to a little spit up while pushing poopoo out. 

Around 7:15, she started projectile vomiting.  Josh had gone to grab some water, and all I could do was yell, "Help!!!!" I had to log-roll Finley on her side to not cause her more pain and so she wouldn't choke on her puke.  The log-rolling requires both hands.  It is where you put one hand on the shoulder and one on the hip and roll the body, keeping the spine in tact and not allowing any skin to twist. Because I had both of my hands on her I couldn't reach the call button. They came running in and helped me control the vomiting into a bucket.

I had done a lot of research... But when you are sleep deprived, exhausted, and panicked- all that knowledge of what to expect goes out the window.  I'd forgotten that vomiting is common post-SDR. My baby went from taking virtually no medication, to having a steady dose of lots of them via IV. That's bound to upset the tummy. 

We got her all changed and cleaned up, which was super fun. Then Josh got in, I was making fun of myself for the way I was panicking and yelling, "Help!" Like I was in 'Life-Alert' commercial.

Just then, the pushing and puking happened again!! Josh and I both panicked. I don't know what it is about a bed-ridden child puking that causes sirens to go off in your head, but it does. We got her cleaned up again, and asked the nurses for a suppository for Fin. They administered it, little sigh of relief for us.

Finley started to push and cry. I felt like I was trying to coach her through labor. After what seemed like five hours, she finally pushed it out!! Holy smokes. 

Mom and Auntie Pam were back from Dinner and brought us some yummy Mexican food.  We told them about the last two vomits and that Finley just gave birth! 

We all chatted as Josh and I ate.  Some entertaining political conversation + some  psychological deep conversation.  Before we knew it, it was well past 9pm and we needed to get some rest.  When Fin goes to sleep for the night, mama needs to go to sleep for the night. 

Given the last two vomits, I asked Josh if he would stay with me. I slept on the bed and Josh slept in the chair next to the bed. Just as we started to doze off, Finley started dry-heaving and vomiting again! What was causing this? I didn't feel like she was pushing anymore.  She might be dehydrated? She wasn't drinking much fluids? I don't know. So we asked for the IV fluids to get put back on. I just feel like undisturbed sleep is all she needs. It's just torturous. 

We got smart this time, and after cleaning her up again, we laid some extra towels down. The nurses shift changed and just as the new nurse came on, Fin was throwing up again. Just a little bike this time. We gave her anti nausea and she got her midnight pain medication, and she drifted off to a peaceful sleep.  

We are roomate free again, for now. Praying it stays that way. Not to be anti social, but just want this girl to sleep. And I would love some too. 

Friday, October 28, 2016

SDR • Day 2

Today is a new day.  We made it through the night seizure-free, so I'm feeling pretty good. Having roommates definitely makes for a more challenging night, but Fin seems to get a couple hours of sleep at a time, so I'm grateful for that. Rest is good, especially after yesterday. 

Josh arrived with my Venti iced Skinny Vanilla Latte and relieved me.  It was harder to leave, but I honestly really needed a shower. One of my newer friends, Meghan, offered to meet for coffee and I took her up on it.  She coincidentally lives really close to the hospital so that was nice.  Just needing to get a small sense of normal even if it's just for a short visit. 

Josh said that he and Finley played all day.  They tossed a light-up ball around for almost two hours, played dolls, and he pretended to hurt himself on everything and she just thought that was hysterical.  All in all he kept her occupied for majority of the day and she was in great spirits. 

I brought up lunch right after her nap.  They changed all of her bandages and bedding which Josh chalked up to a "really fun" experience.  He's really made me a proud wife, I feel so lucky to have him be my partner. I know, I'm all the Emo feels today. Lol. 

My mom and her long time friend 'Auntie Pam' came into town a bit ago, so I walked to the hotel to catch them up on the night. Luckily, I only had good news to report. 

I will say, if you or your child are preparing to undergo this surgery, this is a really hard thing to experience.  Today, though... Not sooooo hard. 

We finally caught wind, our little friend Chatlotte is now on our floor and recovering well.  She has had a rough couple days as well and we are just happy to hear that they are out of the ICU.  

My mom and Pam brought us Dinner. 

We ate and breathed a sigh of relief. 

Josh kissed Fin and I goodnight. Finley was getting pretty sleepy so I decided to turn off the lights. Our roommates left. We are alone. 

Peace and quiet. 

Just as I'm closing my eyes, to get some rest, our evening nurse comes in.  Lets just say she is not on the extremely quiet side. Fin was so frestrated and startled by the noises she yelled out, "I'm gonna be sick!" Then she projectile vomited!! We ordered her anti-nausea meds, cleaned her up, and then she finally just dozed off. I strongly suggested that Finley not be awakened until the 4am vitals. Mama bear came out, my poor baby has just had enough. Hopefully that nurse doesn't think I'm a biatch. But, just at my breaking point. So, obviously I'm really looking forward to tomorrow.  

Thursday, October 27, 2016

SDR • Day 1

For the record, I really want to title this, "the day from hell". But they say that the worst day in the whole healing process is day 3. So, I guess we'll wait for our impending doom. 

Day 1 started fabulously. In spite of our neighbors snoring, I was able to get about 4 hours of solid rest and it seems like Finley got a pinch more than that. Daddy relieved me from my 'shift' and I was able to get out and get some fresh air. I desperately needed it, just to regain a sense of normalcy.  

I went down and got a Starbucks and took a few laps around the hospital and Forrest park, down some cute streets- getting some footage on my GoPro for the little documentary I'm making of our SDR trip. Called some friends to tell them our crazy Dog Drama of yesterday.

After a few hours, I went back in and checked on Josh and Fin. My husband told me how refreshed I looked and I really needed that walk. We sat and tried to distract a grumpy girl from wanting to "stand up"... She's really hard to keep down, even with the drugs.  

Dr. Park made his entrance very quickly. Again, too fast for me to get documentation of it. (He's like the sneaky butler on Mr. Deeds!) 

"How's she doing?" Dr. asked.

"Great," josh said. "She really wants to get up." 

Dr. Park smiled, as if to say, she's a strong one

He left swiftly. I was feeling super good, I wanted to go somewhere and praise God and call my mom! So I went up to the zen garden. I was sitting there thinking how ideal this whole procedure has been. I was smiling and updating my friends via text, when I got a text from Josh.

A seizure?! 

Right there sitting on that bench, I lost my marbles in the not-so-zen garden. 

I could not get up to the room fast enough. We had just seen Dr. Park. She was just doing great. 

My stomach was in knots, I was forcing down the wonderful bagel I had just eaten on my outing. 

I got back in the room, my Husband looked like he had seen a ghost. The Nurse gave me that look of pity, one I'm all too familiar with. Like she had news to tell me that she knew was gonna rip my heart out of my chest. 

I asked Josh to tell me what happened. He recalled the events: 

   "We were just sitting here and she was talking to me and we were playing.  All of a sudden her entire body started shaking, her eyes were rolling back, and she was making a painful moan... It lasted about a minute. The alarms were beeping and I had to yell for help! It was the scariest thing I've ever experienced. Our poor baby girls. That was awful. Her whole body was seizing."

I was a wreck. I contribute most of my breakdown to lack of sleep and intense fear. To me this seizure signified more than an "unanticipated setback." It signified a long term new medical condition we will have to maintain.  It signified another emotional roller coaster. It also freakishly resembled a similar situation with my dad and mother-in-law; both who passed away in hospitals following brain trauma. To me this was a global event, not isolated.

It felt earth-shattering. I know that sounds dramatic, but I'm just trying to help you understand the severity of emotions I was feeling.

I approached the curtain.  Since we have a shared room, we keep our curtain closed majority of the time. I peeked around the corner and saw my baby resting.  I guess seizures make you very sleepy afterward. She needed sufficient rest, so maybe it was a safety mechanism in her brain, a way for it to hit the "off switch" so to speak. 

I had to get away. Isn't that awful? I felt terrible, but I needed fresh air again. I went down to the outside. Breathed deep, slow breaths. Then I went up to the Ronald Macdonald House room- I actually don't remember where I went after that, but I know at some point I was in the RMH because for some reason, I went "live" on Facebook in there. I was practically blacked out, probably due to being in shock. 

Yeah... That really happened. You sort of just say goodbye to vanity when you are amidst such pain.  I thought about deleting it, but I'm just gonna let it circulate. It is one thing to read someone's prayer request- it's quite another to see a mamabear in pain personally requesting one. 

I balled for an hour. I felt like my thoughts were wild horses taking over my brain and I was trying to lasso them. (Again, just trying to paint the picture of what it was like.)

When my dad was in the hospital for FOUR WEEKS, there was an overwhelming sense of peace for me,  majority of the time. Like God was giving me a warm hug, I can't explain it. 

This felt cold and like I was alone. This felt like abandonment. This was scary. 

I returned to the zen garden to pray.  I know we are to praise God through our trials.  How on earth was I really supposed to worship amidst this type of turmoil. I have no idea if she's going to be okay, literally, no idea. 

Saying Christian terminology on a keyboard and living them out are two VERY different things.  But, I know I am a Christian, and everytime I get tested its scary to have to actually practice what I preach. 

I got on my knees in the rain and cried.  I listened to nothingness, thinking maybe a comforting thought will come to me. 

Nothing came to me. 

I tried really hard, like I was able to will it to happen. Like God is a genie, boy was I rubbing that lamp. 

Still nothing. I knew I needed to be still. I walked around looking for "signs".  Everywhere up in that zen garden is sad. It's all donated memorials "in memory" of someone.  I thought, oh my gosh, are these the signs that I should be getting? 

I took one lap around and thought, I'm outa here! No - thank you! 

Now, this may sound silly to some of you reading this, and I honestly feel silly saying it, but if you experienced the moment with me, you would totally think I was being logical by "looking for signs."  It's basically what you do when you don't know what to do and time HAS to pass somehow.  You hate living those moments, I wish I could have just gone to sleep and woken up when everything was okay, but that wasn't an option. Because, what's sleep? 

I felt bad for just abandoning my husband and daughter, so I returned to the room. I need to be a big girl and face this.  I went in and sat with them, we cried and talked and cried some more. Not to alarm Fin at all, she was out of it. 

They sent in for an EEG, and then cancelled it. It didn't surprise me. It actually made me feel better, I knew a test like that would just traumatize her more. 

She woke up and was in good spirits. Giggling and wanting to eat. Daddy makes her extra happy, so he fed her some Mac and Cheese. Who doesn't feel better eatin' some good ol Mac!?

We were later greeted by one of the Nuerologists on Dr. Park's team. He said that they feel like an isolated seizure is not a cause for concern and testing is not necessary yet.  Since Finley has a history of infantile seizures (last one occurred when she was around 5 months old), the stress of going under anesthesia and the trauma to her body from surgery could have triggered it. 

I felt a sense of relief hearing the doctor say that.  Typically I feel like it's always a "wait and see" type situation. I need to TRUST GOD and shut my mind up. 

The time came for me to situate myself for "bed time" and for my wonderful husband to go get his rest. Finley was extra irritable and I had the feeling it was going to be a long night. 

I prayed to God, "I know I don't feel you, but that doesn't mean you aren't here. Please just allow Finley to get rest." 

I just cried some more and texted with my friends, my friends really are the best. They bring me comfort.

Before I knew it, she fell asleep. Not without some head caressing and chocolate, but it happened by the grace of God!  I think I am going to turn off my phone and get some sleep. I texted my husband, "she's finally asleep.  I'm going to rest too."  Poor thing, I gave him a heart attack, he said. Praying for a seizure free night. Hoping day 2 is less eventful. 

Wednesday, October 26, 2016

Why we are fundraising for Finley

I've blogged the last couple days, but looking at how many new visitors we have, I wanted to compile our story into one updated Blog Post.

Here is Our story.

Shortly after our first wedding anniversary we did what every couple tends to do and decided to try for baby. After a long 14 months of having no success we were mentally exhausted and turned to an Infertility Specialist. We learned that I have what's called Diminished Ovarian Reserve (a known side-effect of the serious acne medication, Accutane). They explained that natural conception would be unlikely and our risk of multiple miscarriages was high. We were crushed. Through all of our prayers, our hearts led us to Adoption. We met with an attorney a month later and thus began the lengthy process. 

After a short wait we received the call that we were chosen by an expecting couple. We were beyond elated to be chosen. We met with the couple and they told us we would become parents to a little girl in just a few short months. To say we were excited would be an understatement. 

A few weeks later, our birthmother showed signs of preterm labor. And our daughter was delivered by emergency c-section at 31 weeks gestation. She spent her first few hours of life fighting, alone in a NICU room hooked up to a ventilator. 3 pounds of pure heaven. I'll never forget the first time I laid my eyes on her, I was so scared and so in love, I just wanted to climb in her little incubator and tell her, "I'll always protect you and I promise to give you the world." And just like that all the pain of infertility was quickly forgotten. 

We chose the name Finley, which means "fair warrior." Couldn't be more fitting. We learned that she had suffered Bilateral Grade-3 Brain Bleeds due to her prematurity. When we googled "Brain Bleeding" we saw that likely she would have Cerebral Palsy (CP). We were told she would be very delayed and might not ever walk. We chose to do everything in our power to make sure this wasn't the case. Early intervention is Key.  We started therapy and Infant Stimulation when she was just 3 months old. We have done tri-weekly Occupational and Physical therapies, stretching programs, eye-surgery and patching, Botox injections, some medications, restricted diets, essential oils, supplements, infant massage, day bracing, night bracing,  horse therapy, water therapy, kinesio-taping, and ballet. All while trying to let her just enjoy being a kid.

Finley's official diagnosis is Spastic Diplegia Cerebral Palsy with overall Left-Side Weakness. Spastic diplegia, historically known as Little's Disease, is a form of CP that is a chronic neuromuscular condition of hypertonia and spasticity — manifested as an especially high and constant "tightness" or "stiffness" — in the muscles of the lower extremities of the human body, usually those of the legs, hips and pelvis. Spastic diplegia accounts for about 22% of all diagnoses of cerebral palsy, and together with spastic quadriplegia and spastic triplegia make up the broad classification spastic cerebral palsy, which accounts for 70% of all cerebral palsy diagnoses.

When recalling the day that Finley was fitted for a wheel chair, two thoughts come to mind. First; that was the sweetest little chair I've ever seen.  Second; this is a tough pill to swallow that this new piece of equipment will be the next season of our life. We are not complaining, we know we are so blessed, but like every parent we long for endless opportunities for our girl. She wants to be standing all the time, I know this because she tells me so. 

My heart breaks a little every time she asks me to help her stand.

If I could give her my legs, I would. As a parent there is nothing more devastating than watching your child suffer or struggle. She has to ask me to walk, to sit on something, to get off something, and often in the mornings she struggles to sit herself up.  Spasticity is her demon. 

A few months ago, the magic happened. 
An answer to our prayers. 

We had many many signs leading us to this SDR surgery that is done in St. Louis. It is known as a life changing surgery for kids with Spastic CP. I've even seen it referred to as "the cure" for Finley's type of CP. Another girl said after the surgery it was like she had new legs, a lot of people are saying that actually. 

Her Pain Management Specialist told us at our last visit in February that he thinks Finley would be an excellent candidate for this procedure.  Really?  An opportunity for new legs for Finley?! 

Her Spasticity is already high and can become tighter as she grows. Often people experience joints popping out of place due to their spasticity, as well as spasms and severe muscle aches, which are all extremely painful. There are medications, but a lifetime of strong pain meds and muscle relaxers filtering through her little liver isn't what we want for her. This surgery is a permanent spasticity reducer and is best performed at the young age of 3.

Guess who just turned 3.

We went through the application process and received our surgery date.
I am now sitting in the hospital writing up this blog.  Yesterday Finley underwent her life-changing surgery.  We traveled across the country, which still sounds crazy to me.
  The Doctor said Finley's surgery went great, no complications. 

Praise God. 

The following afternoon, as my husband sat beside her, her little body had a grand mal seizure.  It lasted about a minute and was the scariest thing he's ever experienced. We do not know what caused this seizure, or if she will have one again. 

The doctor had also said his prognosis was that Finley would have independence to walk on her own, even exercise. Talk about a Miracle! 

She has a history of infantile seizures, her last one occueed when she was just 5 months old, very scary. 

Since she has gone almost 3 years seizure-free, I believed they were behind us. I pray they stay behind us and that this is an isolated occurrence. 
  I'm mentally exhausted and broken.  I'm doing my best to be strong, but we can't always be the broom... Somedays we are the pieces.
  We chose YouCaring for our fundraiser because- they care.  They are a smaller company and have been incredible with us.  They have gone to great lengths to make us feel important and I just could not be more grateful for our YouCaring Family. A donation of any size would help us greatly as insurance did not cover this procedure. Our food, travel, and medical expenses when all is said and done, will certainly exceed $60k.  We are still collecting donations, as well as shares + prayers.  We are extremely grateful to those continuing to spread awareness via Finley's story. 

Right now we are exercising our Faith.

To watch our story : click here

To donate: click here

To read more about the SDR surgery:  click here


SDR • Surgery Day

I'm pretty sure I didn't sleep a wink.  That 4am alarm crept up on me like the boogie man!  My husband and I rolled quietly out of bed and freshened up (as fresh as one can get themselves at 4am on no sleep). As I was putting on my clothes, I kept thinking, "I'm gonna be in these for a couple days, probably."  Every other hospital trip I've been on involves me in the same clothes for days.  This is just such a Dej√° Vu experience for my husband and I. All kinds of thoughts ran through my mind and before I knew it I had finished my cup of hotel coffee and we were ready to head out the door. I grabbed Fin from her deep sleep and carried her straight to the elevator. We walked through the brisk dark morning streets, ofcourse we arrived about 15 minutes early to the hospital. We are eager beavers I guess. We waited for the Hospital to open on a bench by the door.  Fin was in great spirits and didn't ask for food or drink at all. Thank Goodness. 

Once we got up to the surgery floor, I just sat and snuggled my girl until we were called back. The fact that she had no idea what was going on was bitter sweet.

We were escorted back into the prep room and she was still doing well.  We met with quite a few different Doctors of the surgery team and felt very comforted by all the details they offered.  They walked us through everything. We got her dressed and she was ready to go! Just needed to give her the "relax medicine" to wheel her back into the OR. They like to have the kids very relaxed before they administer anything painful. It's really very considerate. 

Naturally, Finley spit out half of that medication.  I was a little freaked! She needed to relax! She usually goes into full-blown-panic-mode when she is in any type of medical facility. Even just watching mommy at the chiropractor sends her into hysterics!  I voiced this to the staff and they said I could accompany her all the way to the OR.  They literally explained everything I would see, how Finley would act once they put the gas mask on, and possible reactions she may have. All which were normal for anesthesia. (Obviously not normal to a mommy.) 
Once I was suited and booted, we rolled out.  I was as "strong" as I could be.  My husband was taking all kinds of pics and we were laughing, probably mostly nervous laughter. 

As I held Finley's hand and we maneuvered her big bed through the halls, I kept telling myself, "I will not cry. I will not cry. I'm Meredith Grey. I'll pretend I'm Meredith Grey." I didn't want my baby to see her mommy scared, trust that I'm totally ok with crying otherwise. 

As soon as that mask went on and her face started doing all the weird things, I just teared up. She didn't see me, she was already out. It was emotional. Like- all the emotions. That's all there is to it. Ofcourse, I apologized for crying (why do I do this to myself?) and made some awkward Grey's Anatomy joke with the nurses. They kindly chuckled. (I know it wasn't funny but I appreciate the sympathy.) They pulled off the mask and let me kiss her face then I was escorted back to the waiting room.

 I laughed to myself at how awkward I am and then tears just started streaming down my face. I hate leaving her, yet I know this is so great for her. It's hard. 

But the humor of my random joke really helped me keep my ish together. 

The 4 hours she was in there flew by, honestly. We just paced, prayed, and praised God on a sort of repeat-cycle. Everyone's texts and comments via social media were amazingly distracting and helped pass the time. Before we knew it we were greeted by the surgeon.  He sort of popped in as if from no where! (Too quick for me to take a picture to document that moment.) However, I'll never forget it.  He was wearing a smile on his face and said, "she did great, no complications." 
 Recovery.. Ugh. Is anyone awesome at coming out of surgery? She was predictably dazed and a little weepy.  She had a couple coughing fits that made my heart race thinking, "She's gonna puke! Oh no! Then she's gonna choke on her puke!"  I remained calm, and we made it through. She continued to progress so we were moved up to the room she is to reside in until we are discharged. 
We covered her sweet face in smooches! She needs to lay and rest on her back for the next three days. The nurses lifted her legs and showed us how the spasticity was gone. We couldn't believe it. It doesn't seem real, her legs are like jello. Just as we were starting to relax from the high we were on... The doorbell rang. (Literally our Ring App alerted us to someone at our front door.) 

My husband spoke with the man in uniform about our dogs. They had gotten out and  were being held by animal control. Okay, I miiiiiiight be a day or two late on their licensing paperwork, that's a long story- I truly did send it in though!  It just showed up as "pending" in their system. So dumb. Either way, I went into an entirely new type of panic-mode arranging their transportation details and where they will now be staying, because obviously they can escape where they were. Anywho- just another super fun detail from today I thought I'd share. My nerves are pretty much shot.   

I'm exhausted and feel like I'm dreaming- like... 
Am I awake? 
Am I asleep? 
Am I a zombie? 
What day is it? 
What time is it?? 

 It's 7pm.  

Finley was finally able to fall asleep about an hour ago.  She was itchy from the meds, so they gave some meds for the itching. So, now I lay on two chairs pushed together and I'm wondering what's going on with our sweet friend, Charlotte. She had the procedure after Fin and we are supposed to be sharing a room. I ran into her Dad in the cafeteria and he said they were in the PICU. Praying for them, and praying for a peaceful night for all.  We sent Daddy back to the hotel to rest so he can take over in the morning and Mommy can go rest. 

 Prayers that I can rest my mind, even just for an hour or two tonight.