One year ago.

I met her a year ago. I cant believe I've only known her a year. I cant imagine my world without her. She has rocked my world. Made me stronger. Helped me learn things I would never imagine. Shes amazing. Shes beautiful. Shes smart. Shes ONE! HOLY CRAP! My baby is ONE!
Every child is a blessing. No matter when it happens, how it happens, why it happens. There is a reason and its a good one. My daughters have molded me into the person I am today. Never in a million years did I think I would be sitting here with two precious daughters to call my own.
When Lydia was born things went "as planned" and even though I was a first time mom and had the normal "is my child eating enough" worries, things were "normal". (I even remember waking up the morning after she was born and being so excited that she was still alive... YAY! we kept her alive for 24 hours! LOL)
 Lydia was pretty much "on time" and like clock work, she and my body knew exactly what to do.  40 weeks and 3 days my water broke and a few hours later there was a baby here.
With Leonora things were a bit different. I waited for what seemed like forever for my body to kick in and for her to make her arrival. I remember talking to Kim, our midwife, about having a weird feeling. I attributed it to knowing people that had bad things happen or over analyzing things. Hind sight being 20/20 I think it was mother's intuition. 41 weeks and 6 days... hours short of 42 weeks, I asked Kim to break my water so we could get this show on the road. Leonora was born within a couple hours and I thought, "Awesome! I cut my time down. This is normal. Things are great." Until she came out looking like a 35 week old baby. There was NO way I was that early. NO way! We even took days away to try to figure out how she could look so young. I remember telling my mom that we were going to be taking her to the hospital hours before we had ever even thought it was a need. Something just wasn't right. 
In a years time she has brought so much light into our lives. I've learned to pay more attention to our days and love them a little more. Her beginning was rocky. Very rocky. And I wasn't ever sure if she was going to make it to the next day. Learning this doesn't make all my days better. I still get irritated and upset and do regular human things that I wish I didn't do. But it makes me realize that all of this could be gone in a flash.
I've learned a lot of medical procedures that I didn't even know existed. Never in a million year would I have thought that I would be administering shots every day. It was out of my realm of thinking. 
I've learned, through the eyes of me 2 1/2 year old, how to be more compassionate and understanding. Lydia has always had a sweet, loving spirit. Since her sister was born she has become even sweeter and even more understanding. I don't know how someone can be as sweet as she is. There isn't a 30 min span that Lydia isn't loving on her sister. It truly amazes me. When we were in the hospital last year I was always worried about Lydia. I knew she would be gentle enough and I knew she would help take care of her sister. But I never wanted her to be afraid. I wanted her to be included in Leonora's medical process. And boy is she ever! She is so proud of her sister. She holds her leg every night when its time for Leonora's shot. She cheers her on and claps for her after Leonora takes her medicine. She lets everyone know to "be easy" with her sister and that she has a tube in her belly. 
How can I not learn so much from these littles? I'm amazed by them everyday!
Leonora has such a fiery spirit about her. I know shes a fighter and quite frankly I have my work cut out for me with her. Shes already a little spit fire. But shes amazing. I'm blessed to have her. I'm blessed to have both of my girls! 

Happy 1st birthday my sweet Leonora Amelia Mae. My little LAMB number 2! You are my wonder!

So proud of you sweet girl! We've made it through the first year! Here's to MANY more!
 

November sucks!!

I've found myself not liking November for almost a decade now. It seems like November gets worse every year. I've lost many loved ones in November, or their birthday is in November. It just doesn't seem like Thanksgiving at the end of the month is enough anymore. Not that I'm not thankful. Just seems like a dim light these days. 

This year has an added an extra level for me. Last year, when I found out I was pregnant with Leonora I was excited and filled with joy. Something good was coming in November of 2012! The year before my niece was born so that meant TWO good things in this crap month. So excited. I was due on the 5th on November. That day came and went. I prayed for it NOT to be the 10th (the day my pop pop passed away). The 10th came and went. I prayed for it NOT to be the 11th (my niece's birthday and I wanted to celebrate her 1st birthday AND my grandma who passed away also shared that birthday). The 11th came and went. I prayed for it NOT to be the 19th (The day my best friend, Hillary's mom passed away and a birthday I would rather not share.) The 19th came and went. Finally the 21st came. It was game time. A baby would be here by the end of the night. MY baby would be here. I was excited. Nervous. Anxious. I couldn't wait. She came in roughly 2 hours and it was awesome. And then, almost immediately, it turned bad. FOR REAL? Come on NOVEMBER! Fast forward THIS November. And after a bad diagnosis for my nephew and losing my aunt I'm realizing that I haven't even begun to grieve for what I went through LAST year much less what has just happened. I'm not a crier. I cry now. Almost every night. Its strange for me. 

Slowly this past week I'm learning that its just bitter sweet. We've had a lot of bad. But this past year has brought a lot of good too. Leonora, despite her rocky beginning and the bumps along the way, has grown by leaps and bounds. She continues to amaze her doctors. That says a lot. I need to celebrate that. I need to grieve our rough start because that's exactly what it was. And even though we might have more trials and more bumps in the road I'm blessed with two amazing little girls. I think I might pray for all our "bumps" to be in November from now on. At least it will only be one really crappy month, right?

No end in sight... well that sounds hopeful.

Where do I even begin? Holy crap. That's where I guess. 
To say that this has been a trying year is an understatement. It has been the hardest year to date. Its funny when I look back on things that I went through and at the time I thought I was literally going to die (insert dramatic hand across the forehead pose) and now I just laugh at those situations. Those times ain't got nothing on this past year. Yes that's right, ain't got nothing.
Let me just bring everyone up to speed. Readers Digest style.
November of last year Leonora was born with a condition called PHP (Pan Hypopituitarism). Her pituitary gland is under developed and she will forever be on hormone replacements. Her body has no idea how to handle anything without her medicines and doesn't know how to fight off infections without our say so by increasing medicines. She has done very well with all of her levels for the most part this year. 
Fast forward to about 3 weeks ago. After my uncle passed, away we got the news that my little nephew (7 months old) has SMA (spinal muscular atrophy). A genetic condition that affects the neurons in your spinal cord. He is currently in a clinical trial which he started this past Wednesday. He is such an amazing little boy. 
Its all too soon... if it ever "NEEDED" to happen. I know that my timing is not perfect but I do feel like it all too soon for my family. 
I know there is a reason for everything and that we were given these super special children (not that all children aren't special) for a reason. I believe that they were given to use because God knew we would take care of them exactly how they needed to be taken care of..... Doesn't make any of this suck less or any less unfair. Its unfair. Its unfair for those little babies. Its unfair for them to have to go through any of it. The poking, the prodding. Its not fair to have to watch it and its not fair not to be able to do anything about it. 

I heard a song tonight thanks to a good friend of mine. I wasn't ready for it. I'm not sure when I will be ready for it. I know one day I will be. Its a great song. Its called Broken Hallelujah by The Afters. I guess the song was written after one of the guys' baby was in the NICU. I'm not sure of the exact story.  

I'm not really sure the point of this post except to ask for prayer. Pray for our Asher boy. Pray for my Na-nie doodlebug. Pray for a cure for this SMA crap. Pray for our other babes as they go through the motions and don't (and won't) really know any other life. Pray for my family. As a whole. For strength. For some kind of tiny understanding or something. For hope. Just pray.

My Lydia

I have a two year old. I HAVE a two year old.... and she is my oldest. WHAT? Sometimes I have a hard time realizing how fast time flies. That is until I stop for a second and realize I'm a mommy to two beautiful girls. Two beautiful little spirits that God has entrusted me with. Whew! 
These past two years have been the greatest of my life thus far. They have been a roller-coaster ride fore sure but the best by far. My girls are such an inspiration to me. I've never EVER wanted to remember each day as badly as I do now. There were of course days that I would have LOVED to video tape so I could pop them in and remember everything about those days. The British accents with the trio, different high school dances, and of course my wedding day. However, these days, I wish I could tape them all from start to finish. I don't want to forget any little detail of my girls growing up.

Lydia- Two years  have FLOWN by. You are such a brilliant, loving, obedient young lady. You LOVE to sign, read books, eat fruit, and dance. Your favorite character is Elmo. You call fishes "bishes" which makes it a little awkward out in public however I still laugh and find it hilarious. I'm going to miss it when you pronounce things correctly. You have an infectious smile, beautiful blue eyes (that "match mommy and Na-Na's... but not dada's"), and lovely dark blonde hair that always gets in your eyes. Every night you sleep with "Pinka" (panda), "Yam" (lamb), chick, monkey, guy, and "yam chock, mom" (lamb chop). I love that you still "name" everything literally by what they are. You love playing with flash cards, coloring with your colors, and watching "signing time Alex Weeya (Leah). Come and payyyy (play)".  Thank you so much for teaching me so much everyday. You amazing me all the time. You are a sponge and soak up all that you are taught.... even when I dont realize you are learning... you are. I am so proud to be your mommy. You test your boundaries daily and end up choosing the path with less consequences. That reminds me of myself... or at least the stories Lovey tells about me as a little girl. You are full of life and love. You love to pray before bedtime and it fills my heart with joy to see how passionate you become. You are a WONDERFUL big cousin and an even better big sister. I know I will never have to worry about your sister. You are always going to take great care of her and protect her! Thank you so much for making me better. For challenging me and encouraging me to grow and become a better person for you, sissy, and daddy. You are awesome Lydia Lou-Who! I love you bubs! You will always be my first and oldest princess!! Love love love you to the moon and back!

Feeding Tube Awareness week!

Today is the first day of the 3rd annual feeding tube awareness week. Something I was unaware of until a few short weeks ago. I never realized how many people actually depend on feeding tubes. Leonora has had a feeding tube off and on since she was 3 days old. Its crazy to think that she has been pretty dependent on a feeding tube for all her life. Its a situation that, for me, is extremely hard to digest. When making the decision to get the g tube I felt at ease. I knew we were going to get home soon and it had been a LONG 7 weeks away from home. I never even thought of the struggles we would have once we got home. Not even just with Leonora but the mental and emotional side of feeding tubes. Its a lot more than I ever realized. I'm going to link the official video for this years feeding tube awareness week. It might not hit you like it hit me and thats okay. But I feel that its extremely important to share. Just so everyone who watches can know a little inside to how tubie parents are feeling and so tubie parents ourselves will know we arent alone! I watched it and was fine until a certain point and then I lost it. Knowing we arent alone in this is releiving. It doesnt make the stress go away or the mental block that I have disappear but it does ease a little bit of the blow knowing there are others who are in it with us! Happy feeding tube awareness week! We love all the tubies(especially the ones who have recently come into our lives!)! You guys are so strong!Feeding tube awareness video

Tubie girl

Lydia loving on Leonora

Sleeping while we vent her tube!

I've been thinking...

So, the other day I watched a video that a lady on the parents of children with panhypopituitarism facebook page posted. Her son just turned a year old and it was a slide show type deal on how the past year went. HOLY COW! It hit me so hard. It was a super flashback of just a few weeks ago. Obviously not all bad but I couldn't help the tears from flowing. Just the thought of how much Leonora has been through in such a short amount of time and how very strong she is. The video made me realize that even though the day to day can be really stressful that over all this is her. I'm going to TRY to remember that every day. So when we have an off day I dont let it set the mood for her life. Shes doing great, she really strong. Such a beautiful strong baby who is loved by so so many. With all of that said, I am going to try my hardest to document every little thing that I can. Hopefully by next year I can make a video of all that shes over come and how much we've been blessed and maybe it can touch someone like that one did me. Thank you to my new panpit family. You guys make it all a little easier!

Another realization of my new normal

Let me start off by saying this: Things could be WAY worse than they are. Thank God for everything we've overcome and for it being what it is and not anything more. 

With that said, I need a minute to break down a bit. I know nobody plans for anything bad to happen to their child(ren). The NICU is never a place that is ever in the plan. I understand that. But it is one of the hardest things I've ever been through emotionally. I truly believe there have been specific paths in my life that I've taken that have prepared me for this. However, it is so emotionally draining. Anyone who has had a baby in the NICU, or anything alike, can relate. 

The past six weeks have been a roller coaster ride to say the least. Leonora has gone through so much. I am so proud of her. She is such a little trooper. We have good days and bad days. The good so out weigh the bad but the bad stick in your mind longer than the good unfortunately. We celebrate small victories (which do happen often!). 

Today was a rougher day than normal. Probably more so for me than her (or at least thats what I'm told :D). Today Leonora got her G tube placed. Which means we get to go home soon (HUGE victory). However, it hit me today that my baby has a tube hanging out of her belly. When I saw her after surgery everything raced through my mind. The tube I had been asking for was finally in place and then I started to think that I didn't want it there any more. Before the surgery it was an easy decision to make. I found myself second guessing (I realize now, after a few hours of processing, that she is fine and doing well and we made the right decision). I find myself looking for G tube accessories on line instead of looking for more cute little clothes or headbands. I find myself searching for cute backpacks to make for her pump when she gets older. Its our new normal. 

Today has hit me harder than any other. I think its a combination of her surgery (which was literally only 4 mins long... prep and recovery took longer than the actual procedure.) and the fact that our stay at the Ronald MCDonald house is coming to a close. We have met so many wonderful people, new friends, who are all in similar situations. What an experience it has been to talk with them and cry with them, pray for them. They have all been a huge blessing to me. I know that it has helped me through so much.  

I have to keep reminding myself that today was a small victory. Leonora is a champion. We're going to be going home soon. A G tube is not the end of the world. Shes not broken. I've met amazingly strong people. Starting the close of this chapter is truly bitter sweet.

Thank you to my Ronald McDonald family! You guys are wonderful and continue to amazing me. We have some pretty amazing kids!! 

Leonora is going to do great. Shes a strong girl. And she is gonna look so darn cute with her G tube accessories (yes there are really accessories! :D)

Waking up to see mommy

Notice NO tube on her face!!