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!!

 

11/21/12 the beginning of our NEW "normal"

 As difficult as this whole process has been, I think writing my birth story will be therapeutic.
Here we go! (FYI There are some pictures... none are graphic. Just a fair warning!)
Let me start off with this. I was "due" November 5th. That day came and went. I didn't think much of it because with Lydia I went 40 weeks and 2days. After 40 weeks came and went and I was headed quickly into 41 weeks I began to get discouraged and tired. Thinking back on my many thoughts of "this baby is never going to come" are now silly. Babies always show up... it might just take a little longer for some to come around. 

Anyhow, November 16th I started having a few contractions. Nothing major, no pain. Just a few every now and again. No big deal. They started coming a bit closer together after I drank my Castor oil milkshake (yes, I WAS THAT desperate.... TWICE!). I called my midwife, Kim, and she decided she had better head over. She came over and timed my contractions, checked the baby's heartbeat, my blood pressure, and started me on some herbal supplements to make my contractions stronger. She was there with her student midwife, Emily. About an hour into their visit and some walking the block in the cold with Hillary and Nathanael, we decided that this wasn't going anywhere. My contractions had stopped. Just stopped. Everyone went home and I went to bed. Nothing. Major let down. I had another appointment with her on the 19th. Everyone was hoping I wouldn't make it to the appointment. That I would have the baby sooner. Sure enough I made it to the appointment where we decided to sweep my membranes. I ended up being 2cm dilated and 50-75% effaced. It didn't do anything though. I think maybe some cramping but that was it. I kept in close contact with Kim for the next few days trying to decide what to do since we were rapidly closing in on 42 weeks. We decided that another round of Castor oil milkshakes were in the plan. So, I started them up again. Wednesday the 21st of November (41 weeks and 6 days) at 9AM I drank my second Castor oil milkshake. I had Nathanael stay home from work and my mom watched Lydia. I texted Kim and Hillary to let them know they deed had been done (or was being done). About a half an hour later the milkshake came back to haunt me. I couldn't keep it down (sorry! But its part of the story). I immediately texted Kim and asked her what to do. She said to come in to the office and she would check to see my progress (if there was any). She checked me and sure enough.... No change! BLAH! We decided to go ahead and sweep my membranes again and see if that helped. She got me to 4cm before I left the office. We decided that the plan would be to go home rest, maybe do some walking, squats, anything to get contractions going (You name it, I tried it!) and if nothing happened by 7 PM she would be on her way to my house to break my water! The drive home was exciting! I felt some cramping. Maybe a few slight contractions but nothing major. I was going to have my baby SOON! Like really soon. I would finally get to meet her face to face by early morning at the latest! I called Hillary to give her an update. I also texted Audrey and asked if she would come. I had a feeling I might need extra hands with Lydia and needed an extra calming spirit! When we got home I rested on the couch while mom and Nathanael made sure everything was prepared. Nothing more happened contraction wise. Kim texted around 6PM to see how I was. She decided to head over to the house after dinner and see if we couldn't get the ball rolling. She arrived around 7:45PM and we got right down to business. Lydia had fallen asleep per her schedule so we used my mom's room to break my water in. My water was broken around 8:15PM. I labored in the living room, chatting and laughing between contractions. Holding onto Nathanael when they got stronger. They came on quickly after my water broke (just like they did with Lydia). After a bit Kim told me she thought it would be okay for me to get in the water. Hillary, Audrey, and Nathanael had been heating up pot of water to pour into the pool to keep it warm enough. Lydia woke up sometime after me getting in the pool so my mom held her on the couch and she fell back asleep quickly. I got in the pool and allowed myself to go to my birth place in my mind. But I couldn't get comfortable. I remembered with Lydia being most comfortable on the toilet but this time I couldn't find my spot. I labored in the pool while being given ice water and having frozen towels (thank you Audrey for that idea!!) put around my neck. Nathanael was in the pool with me being my rock the entire time. Every time I moved he got onto his hands and knees so I could lean on him like a table. 
About ten minutes before Leonora was born I went to the bathroom to sit on the toilet thinking it would be more comfortable. I was wrong. But as I walked down the hall to the bathroom I heard Kim say, "Are you going to make it back?" I said, "I don't know." to which her reply was, "ummm... okay. Well, let me know if you feel her head." It was pretty hysterical. I wish I had the energy to laugh then!
 I made it back to the tub where I started to get the urge to push... I thought. I wasn't totally sure. I even said, "I think I'm pushing." So, I went with it. And with a few "Oh my God"s and one quick leg movement Leonora was born! Big sister even woke up just in time to meet her little sissy. 10:26PM November 21st, 2012. Two and a half hours BEFORE Thanksgiving (Lydia was 21 mins AFTER Easter). Two and a half hours before my 42 week mark. Four pushes. She was covered in vernix and had a head full of dark, thick, curly hair. After (almost) 42 weeks my second beauty was here. At home. In the water. Just like I had planned. My labor and delivery was beautiful.

Filling the pool

First hard contraction

My rock

Trying not to break Mrs. Areline's fingers

Lovey and big sister

Hiney and Lydia

Shes here!

Newborn exam

My second little lamb

A LONG time coming.

This blog is a long time coming for more than one reason.
First, LEONORA IS HERE!! YAY!!!!!!!! (I know  you all knew that already but whatever!) After 41weeks and 6 day she was born at home, in the water, on November 21, 2012 (a few hours before Thanksgiving... Go figure. My kids ALWAYS miss the holidays by a few hours!) at 10:26pm after a 2 hour labor! She was 7lbs 2oz and 21 1/4 inches long.

Since then our lives have been a roller coaster to say the least. She was born full term (obviously) but had some premature qualities (which I'll write about when I get the time to write about her birth story). Nobody could figure it out and after a few hours of not being able to regulate her body temperature we decided to take her to the ER to find out what was going on. We all figured a few warming blankets some monitoring and we would be headed home. The Dr.s said lets watch her for 48 hours and then we should be good to go. 48 hours turned into five days. Five days into a week and a week into four weeks. She has been put through every test imaginable and every scan there is. Everything came back normal until one day her bilirubin levels went back up after a round of photo therapy. Thankfully this caught the Dr.'s attention and he decided to run some labs on her thyroid as extended jaundice levels are a sign of hypothyroidism. The results came back quickly and we were excited (weird I know) to hear that they were abnormal. FINALLY some sort of clue as to what was going on and why she couldn't come home. He informed us that they thyroid results weren't the part that was abnormal but the results from the pituitary gland (what controls your hormones... you would be surprised what gets affected when you lack hormones) were. He was going to transfer us to Tampa General Hospital where there was an endocrinologist who he had been contacting about Leonora.
It was SO hard to see her get loaded up into the little box thing that they use to transport the babies. I knew then that we were in for a long journey. Luckily when we got to Tampa General they already had a clue as to what direction to look. They started on the hormones they knew she was lacking and we had a pretty decent turn around. She was already starting to act like a different kid. Better and better each day. 

She is still doing really well. We have taken one step forward and what feels like a MILLION back but Nathanael has been here to assure me that its only one step back or sometimes even a half of a step. Right now we are still working on her eating properly. She has some congestion and we arent sure why which is making it a bit difficult for her to breathe and eat. We started her on a special bottle that seems to be easier than breast feeding (Which we werent having so much of an issue with as it was we werent thinking she was getting enough to eat due to her suck not being strong.... muscle issue due to hormones which it getting better) so we will actually be getting rid of the bottle and going back to the breast (Dr.'s recommendation which made me really happy... At this point I just want her to eat LOL). So, the next couple of days are really going to be crucial. I will probably be living, breathing, eating hospital (Like I havent been already LOL). I will probably be staying the night there to do every feeding by breast and hopefully see some sort of turn around. She will be seeing one more specialist about her congestion to see if it is caused from reflux or if there is an actual blockage there (which would also mess with feeding).

There is also a possibility that she will go home with a G tube (a feeding tube that goes directly into her stomach but is not permanent). I'm saying this so people aren't shocked or upset when they first see her and she has a tube connected to her. The Dr has already said we are going to try everything before a g tube get placed because he doesn't want to rush her on anything but he also knows that the place she will heal most is at home. He said that it will most likely be another week or two in the hospital depending on the results from the specialist and how she does with feedings. Either way she is going to be fine. We all will be (Her big sister is a TROOPER!! She has done nothing but amaze me through this whole thing... I'm blessed with some pretty amazing girls!). Its our new normal. And that's okay because shes her own person and this is her story.

Thankfully it was caught early on so there is no permanent damage to any of the organs that run off the hormones she was lacking. She will be on them for the rest of her life as there is no reversing this or making her pituitary grow.

The cause is unknown and isn't able to be detected in utero. In fact they grown normally while inside and are usually term babies with a normal birth weight and length. It is a rare condition that occurs in 1 out of 100,000. We are just that lucky! ;) 

Other than that shes healthy! She is a beautiful little girl who is extremely strong! We are so blessed and thankful to have her in our family! Its going to be a long journey and I know that this is just the beginning but I wouldn't change it for the world. 

27 weeks, 3rd trimester, CLOSER AND CLOSER to baby #2

 Today(ish) marks 27 weeks of pregnancy for me. I cant believe that I'm already in my third trimester and THAT much closer to meeting our new little one. 

Life has been so crazy and of course never slows down, so it has been hard to grasp this pregnancy. I hate that it is flying by now. Since things haven't slowed down any it hasn't allowed much time to (sadly) get super excited about this pregnancy. Now, I am by NO means saying I'm not excited. I TOTALLY am. I'm very excited, Lydia already loves the concept of her sister that she grasps, and Nathanael loves the thought of another daughter. Its just been very different from the first time around. I guess every pregnancy tends to be. It is just hard for me to be okay with that. 

Lydia is growing by leaps and bounds. Its scary to think about how fast shes growing but its amazing to watch. Just in the past couple of weeks there have been SO many things she has learned. August 6th marks the first time she pooped in the potty. All by herself. Like a big girl. Okay, okay so I put her on her potty after she had a little poop in the diaper. However, August 8th (yes these are marked down in her baby book ;D) she WILLINGLY pooped in the potty. We have also had two successful peeps (yes peeps) in the potty. Its amazing because she is so interested in the potty. We bought it, set it out, and she has taken off with it. I figured there would be no way she would be super interested in it but if this mommy can have one in panties before number two is here, she wouldn't complain! HA HA HA! Now, if that will actually happen, who knows? But the more interest she shows the more we encourage her. She will even sign poop and potty now! Yesterday she also did her first water color painting. She loves to color so I figured I would bust out the watercolors. We had a blast painting! And her first painting came out beautifully (but I'm biased!)

The last few days have been pretty difficult. Not anything bad just tired mommy and fussy baby days. Lydia has been working on her 2nd I tooth (which was almost the death of me... A little bit exaggerated but not by much and yes, my baby sort of looks like a vampire! Whatever! :D) which finally broke through TODAY!! That means we have 4 teeth now. 1 a month since May!! She also decided to climb on one of her chairs and do a face plant on the tile as I was telling her to get down and coming to get her. It was one of those slow motion, just out of reach moments. No blood thank goodness but she did end up with a pretty fat lip and a slight bruise on her cheek. Nothing she didn't shake off. Pretty sure I had a harder time with it!

Baby's fat lip

Fun after bath time

Lately, she has taken off with her walking. Its funny because shes so tiny and then you see her speed walking down the hallway. She cracks me up. 
We've also noticed the she has awesome fine motor skills. She studies EVERYTHING and knows exactly what shes doing and what she wants. I ask her if shes hungry and she will sign food and yes and then I'll tell her to go to her chair and she will walk over to her highchair with bib in hand and wait for me to put her in. It just amazes me how much they learn and how quickly they learn it!! She will hold up one finger when shes asked how old she is, she dances more than ever, she yells bye when anyone leaves the room, and her chattering is so much more now. She definitely has an opinion and WILL be heard (I have no idea where she gets it from).  

The next few months will just be getting ready for our lives to change dramatically. I've been a cleaning (or nesting... whatever) fool and Nathanael has been working hard at work and to make his wife happy! HA! What a good man he is! The next few months are going to be a whirlwind. But again, like my last post, change is good and welcomed (as much as I don't want to welcome it.) 
Time for cleaning, organizing, last minute preparations, resting up (HA), and a little extra loving on my booger time!
We cant wait to meet you Leonora! We know its close and it will be a huge change but we are ALL SO excited to meet you, love on you, and watch you grow.
Lydia, you continue you to amaze me with how smart and sweet you are! You have such a beautiful soul! I love you to the moon and back my punkin butt!

BIG blue eyes!

Being okay....

Lately I've been faced with things that keep reminding me (or smacking me in the face with the fact) that there is a season for everything. I'm not a huge fan of change. Never have been. 
However, without change you have no growth, and who wants to be complacent? Not me. Without change you have no movement forward, and who wants to stay sitting still? Not me. 

 Ecclesiastes 3:1-9

1There is a time for everything,

and a season for every activity under heaven:

2a time to be born and a time to die,

a time to plant and a time to uproot,

3a time to kill and a time to heal,

a time to tear down and a time to build,

4a time to weep and a time to laugh,

a time to mourn and a time to dance,

5a time to scatter stones and a time to gather them,

a time to embrace and a time to refrain,

6a time to search and a time to give up,

a time to keep and a time to throw away,

7a time to tear and a time to mend,

a time to be silent and a time to speak,

8a time to love and a time to hate,

a time for war: and a time for peace. 

11He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end.

 The part that I never ever remember is that change is God's plan. He's made everything beautiful IN ITS TIME! Wow!! So, even though people leave us, even though things hurt us and make us sad, there is always the knowledge that it will pass. A hard thing for me to realize and remember is that time doesn't stand still. When "bad" things happen to me I feel like I will be in the moment forever. But I'm told that there is a time for everything. That "this too shall pass". I wont stay in that moment forever. Whew! That's a relief. Why cant I remember that in the moment? Why cant I feel that relief then? Maybe cause I rebel against the change so much. I hope I can continue to learn that CHANGE IS GOOD. CHANGE IS OKAY. Its okay for things to happen, people to change, tears to come, loved ones to leave... it will always be made beautiful in its time! It will ALWAYS be made beautiful in its time! Always! Not sometimes but always.