Monday, December 15, 2014

Long overdue

I’m going to start off by saying sorry. It’s been about 2 months since I have done an update on Adalynne and I know most of you like reading about us. There are various reasons as to why it’s been so long. We have gone to California and Florida to visit family and honestly, having two trips back to back overwhelmed me. In addition, I am exhausted, utterly exhausted mentally, physically, all over just exhausted.  We are in the ending stretch of our journey and I know that.  My days now consist of babyvom and breathing episodes mixed with seizures and bloodcurdling screams. I watch my warrior struggle every day with these, “episodes” as I call them that happen 10 to 15 times a day lasting 30 to 45 minutes or longer.  In between these episodes, I spend my time attempting to get Adalynne to eat. She can no longer suck on a bottle anymore but luckily can still swallow so we use a spoon.  I make all her baby food and attempt to pack as many calories as I can in it. She was born at 7 lbs. 1 oz. and is now, 1 day shy of 5 months weighing 10 lbs. 8ozs… Our days together are dwindling and I’m terrified but thankful. Tomorrow she will be 5 months old. 5 beautiful months we have had together. 5 months of waking up to the most beautiful baby I have ever seen. 5 months of snuggles and love. As much as I want to have 5 more months/years/ decades of seeing her beautiful face, I am ready for her suffering to end. Watching your baby go through this is torture, fucking torture. I stay as strong as I can until I have to stop and think about everything. Maybe another reason I haven’t wrote a blog in months. This blog makes me stop and focus on everything and spend time reflecting. This is probably a good thing for me to do but living this day to day life is sometimes, enough for me to handle. Being a single mom is hard but, being a single mom to a special needs/ terminal baby is a whole new level of challenging. Another thing I am thankful for is you all. Each one of you that read this; that ask for updates, that send me messages that you’re thinking of us, or sending us love, my friends that pull me out of the black hole I’m sliding into I thank you. I fucking thank you so much and I love you all. Some days feel like I literally cannot breath and bathroom trips turn into my few seconds of crying and then pulling my shit together and getting back to what needs to be done. But, enough of this depression. I finally got Adalynne to meet my family, not all of them but close. Hopefully we will get her to Indiana before her time ends but I need a break from traveling.  Adalynne was able to visit Seaport Village, La Posta and Yogurt Mill during our California trip. My favorite places to go to when we visit there.  In Florida, we were able to take her to Animal Kingdom in Disney. I’m sure taking your 4 month old to Disney seems a little dumb but I will never be able to take here ever again. Or see her face light up when she sees a Princess or ride the teacups. I won’t get to do those things with my little girl.. If I could ask for one thing it would be for her to be able to actually see these places. I hate having a blind baby, it breaks my heart knowing she cannot see my face light up when she comes out of her episodes and her beautiful blue eyes look up trying to find the voice she hears. 
Monday December 15, 2014 
I had to pause that blog and am now getting back to it, finally. Luckily, the past few days have been better for us both. I am getting back to feeling a little happier and myself and Adalynne has had a better handle on things since we fixed her medicine. She is eating a little bit better as well. She was able to "see"me dance on stage recently. It was extremely bittersweet seeing all these beautiful girls and knowing I'll never see her up there. I am grateful that we had our time together in a place that holds a special grip on my heart.  I think we will make it to Christmas but I have this gut feeling the start of next year will be our passing time. We will be spending lots of time snuggled up while we can.  Recently, Adalynne went and saw a neurologist who gave me no answers about her seizures.  The best I can do is attempt to keep her comfortable. Which is an increase in morphine, warm baths, and lots of cuddles.   So, until the next time I can get myself to write another one of these happy holidays to you all and good night everyone. Much love to you all beautiful people. 































Saturday, November 8, 2014

New Mommy Life

Over these past weeks of being a new mom, I have learned some things I wanted to share with soon-to-be mommies or for other moms to have a little giggle. I do know my little warrior is rather different than most babies but I’d like to think others can relate to most of these things.

v  You can never, ever have too many diapers in your diaper bag. The one day you think oh I’ll just bring a couple is the same day you’re sitting in the pediatricians office while your newborn stinks each diaper seconds after you put it on her leaving you running to the store to get more before finishing your errands.
v  Always use the bottle stoppers when going out an about or you will be THAT mom with breast milk leaking all over the place.
v  Go ahead and accept your shirts will NEVER not have drool, milk or vomit on them. Moms are probably the ones that can rock that drool-stained shirts like the bad asses we are.
v  It’s okay to not know if you’re rocking your little one to sleep or rocking to keep your extremely sleep deprived self calm. Just keep rocking, just keep rocking, just keep rocking.
v  Realize there is never such thing as too much coffee and why has no one put coffee holders on car seats?! I can’t carry a baby, diaper bag, AND my eye lid opener cup at the same time! Actually, I can and will look like a boss while doing it (no one will see us struggle)
v  You will stare at more poop than you ever thought possible and unless it’s really bad you will not be as grossed out as you think.
vDon’t feel bad if you just get tons of pictures of your little one crying, use these as “laughing cards” later when you need a little pick me up. They’re little drama queens anyways.
v  I use to think that I could only sing lullabies to my little one, then  realized she has no clue what I am saying. Even Eminem’s Rap God can lull a baby to sleep, if you say it softly. So sing, whatever type of music of your choice. These are our little creations anyways so who’s to say they don’t love a good rap beat or a Modest Mouse song? There is only so much Twinkle Twinkle blah blah blah we can take, right?
v  You will be more tired than you ever thought was possible.  Tired crying is totally acceptable, we won’t tell anybody I promise.
v  The first weeks are like the Aladdin Movie “A Whole New World” but, of course without the magic carpet ride and 3 wishes and more like feeling like the depressed Genie . Alone, blue and with this huge jiggly belly. It will get better, I promise.

Above all, laugh; it is all we have at the end of the day to keep us sane. Between stinky diapers, crying babies, or spit up covered clothes every mom goes through it and survives so just laugh.  These days go by so quickly and you should cherish them all even the sticky, stinky ones. : )



Hope these “tips” help some of you out, even if it’s just for a good laugh.  I’ll continue to keep a running list of things s we continue our journey. Much love to my fellow sleepy, tired, moms out there. We can do it! 





F.U. mom

Monday, October 13, 2014

We made it to three!

Hello all!! It’s been a while since I have wrote on here. We have been a wee bit busy.  Adalynne is now THREE MONTHS OLD!!! We have made it another beautiful month and I could not be more ecstatic.  She has been healing up perfectly from her surgery and so far the fluid has not started to increase dramatically.  Her seizures have lessened and we hardly see them anymore.  Plus we are back to a bottle and eating 4 ozs!!! Wohoooooo! I am pretty sure she is in a growth spurt because she has been back to eating almost every 2 to 3 hours. Less sleep for me but happy to see her growing.  I started working with a massage therapist last week who has shown me some Chinese medicine techniques to help her energy flow and muscle tone, extremely excited about it!  I am over the moon that it is October, my favorite month that ends with my favorite holiday. We get to attend the Capturing Hopes Halloween event this weekend and see all the beautiful people who help families get pictures of their little warriors. I also just met with the fantastic photographer Deborah Hendrix (a Davie county local : )  ) who is from Now I Lay Me Down To Sleep, the organization that captured our first family encounter hours after our sweet warrior was welcomed into this world. To any photographers reading this please, please, please go and check out both of these volunteer groups they are always in need of people to come and capture a family and their beautiful creations. As I said October is my favorite month and along with October comes the fair, another high point in the month. I took Adalynne and Ian with my mom and we had a blast seeing the animals and all the exhibits. It’s something I have gone to every year and to be able to take her made this one very special to me. Oh, so guess what the big girl has learned to do?!?! CRY not exactly like “normal” babies but she defiantly has her way of telling us that she is not a happy camper. It about the cutest thing I’ve ever seen with her little lip quivering and all. Well as the cute little pig from the looney tunes says “That’s all folks” until next time my beautiful readers. Much love to you all! 

P.S. I completely totaled my car the other day so please send me some strength and I guess some good karma since I obviously need it. Hope to find another car as quickly as possible… 




My second mom, so happy they have finally met :'') 
Baby hugs are the best



after 
before 




 The Halloween love is real with these three outfits ^^^




Stubborn boy


<3 <3 <3 
He loves pictures



Saturday, September 13, 2014

Post Op

We arrived at Baptist hospital at 6 am September 12th, checked in and then nervously waited to be called back. Once we got in the OR prep room things happened pretty rapidly, doctors were waiting on us. Like seriously when does that EVER happen? Like never but hey, I'll accept it. Adalynne got her own little baby hospital gown and even little hospital socks (yes they even had teeny little skid resistance grippes on the bottom.) Cause ya know, all these 2 month olds running around sliding all over the hospital need them. Back to the hospital gown for a second. Most of you that know about my grandmother I lost and know about her love of elephants that we share.  She unexpectedly passed a few years ago and my heart has never been the same. Going through this without her here is so hard but I always find peace in knowing once Adalynne goes my grandma will take care of her. Well, Adalynnes gown had pink little elephants and dinosaurs all over it. She always gives us a sign she is with us (and Ian has a massive love of dinosaurs.) So, I took my signs as a good thing and calmed a wee bit. Her surgery started at 7:30 and only lasted a little over an hour. Once she was out of recovery she was put into the PICU.  She had a seizure after she was put into the room and they placed a nose trumpet in to open her airway.  She has had multiple seizures and breathing issues since we have been here.  I've learned that she has been having a whole lot more seizures at home that I didn't recognize to be a seizure. So that's a little upsetting to know that she has not only had more seizures but, they happen multiple times a day. As of right now she has been taken off the IV morphine and been getting her normal oral solution that we have at home. She did eat 3 oz finally, not out of a bottle but back to the feeding syringe we use to use. She is being transferred to the intermediate care unit which is good news and a step down from intensive. Hopefully we will get to go home tomorrow! Until next time my sweet souls, love you all!! 

***FORWARNING*** there is a picture of her incision just so the weak stomached can be prepared. 




Thanks grandma, love you