Monday, February 27, 2012

"There are no shortcuts"

So i hate to say it but i might only be blogging once a week. As my days run a little more together, I dont have the extra engery to put into my blogs late at night like I use to. But either way, i will still stay as informative as I have been in all my blogs, you guys will just have to play catch up with me. So here goes:..

It's been a little bit of a emotional week. I finally found some alone time which meant going to the grocery store and needless to say I had a meltdown on the way home. I dont know if it's because I didnt get to see Alexis for our Sunday gathering (mommy was exhausted from week prior and wasn't feeling to hot and it was really bad weather also and couldn't take pumpkin out) but sometimes I feel like it really throws me off.. But it doesn't help either when I have all these reminders and nudges at me. (you will see why as you read along)
Well needless to say after melting downI get home, regroup and actually made dinner. I turn the tv on and first thing (which was my nudge from Alexis i'm sure) Story at 11, Judi Gaston shares her story of losing her first son I believe back in 2005 it said. (for those who dont live local , she is a local news anchor here for one our tv stations and has been for qutie sometime) Needless to say, i had to dvr because i was just to tired to stay up later so i watched it the next morning. It is always comforting to hear another angel mommy speak and regardless of how different our stories are, our emotions are all still the same and it never fails, every time i meet a new angel mommy they always say something that moves m e or something that i've been feeling the whole time as well but haven't said yet.  They lost their son while he was still in utero. She went for a check up and there was no heartbeat. Apparently there was a small kink in his umblical cord.  She still had to deliever and had a private funeral for her son, Deuce in Atl. She stated that after it happen, she couldn't face anyone, that was good to know that i wasn't the only one feeling like that, and she didnt, she took time off and went to Washington to be with her husband..  Her most powerful words that are still staying with me, "there is no shortcut to greif, you got to own it."  I'm finding this so true. Deep down i've tried hard to just keep telling myself that i'm healed this day and i'm healed that day when in reality of things, i'm just lying to myself. I will never be heal as even watching her speak you could still see the pain in a mothers eyes. The pain of losing a child will never go away and that is just something I have to accept regardless if i like it or not.. Even when you have another child,  there will always be a part of you missing. NOTHING can ever replace the pain/void. I am happy to report though, that they ended up adopting a little boy and it was official i think  i recall last year but he is such a cutie and is surround by so much love.  I also liked the fact that they touched on the husband after the story and alot of people i think give sympthay to the mother but yet it needs to be to the mother AND father. I have women to talk to but Scott really doesn't have anyone except me and sometimes i know he tries to keep things from me in fear of me falling apart.  That the man in him, always the protector, I just wish he didnt have to be that way. But bit by bit, i remind him constantly this is our journey and not just mine and bit by bit a little part of him opens.. Thats all I can ask for..
My reminders also this week really hit and I just dont understand. HOw can i not be emotional. 1) Greys Anatomy this week. yeah, it started off with a premature baby at 24 weeks that ended up contracting NEC (which is what we lost Alexis to) and they had to do emergeny surgery and he survived it but then it had me asking "why us then, why our Alexis".. Why couldn't she be saved.. I had to stop watching  right after it began but by that time te damange was already done. Then we move on to private practice 2) and what is on their story line, yep, twins..  Although it was a different complication it was still twins following right after ya know. It's like every time Scott and I go to the doctors office now, it never fails, we always see a set of newborn twins and we are back to the whole "why" of things.I know we will never know why but i still can't help but to ask....

Also this week, my awsome friends hosted me a wonderful baby shower this past sunday (yesterday) we got so many wipes, formula and diapers (as thats all we requested) and it was just amazing. I hated though that we had quite a bit of people who rsvp'ed and my friends prepared for that many people but yet they didnt show but i guess that's to be expected for anything that is hosted.. but it was still amazing and they did such a great job.. i will post pictures of all our loot and what not and the very special video made as well when i get them all together.
But having the shower i think also put me in my emotional week. For most of those who dont know. We were actually scheduled to have this same shower original prior to the girls and i still left the date open for when the girls came but the day it was scheduled, was the day that we ended up having to bury our little angel. (August 20, 2011) Its been hard to say that and i cry even now still typing it. Its' taking me this long to allow my friends to host me one as i've just been so scared and I just have that constant association and it's hard to disassocaite the two. But they did a amazing job and we are very lucky to be surround by such love and support.
THANK YOU GUYS!!! WE LOVE YALL VERY MUCH!!!

On to little pumpkin. She did so good this weekend although worn out from all everything, she was just perfect through it all.. We actually took her out to eat for the first time ever and we went and saw my brother who works at a japanesse resturant. I said if this is her first time, at least she can see her uncle then and she just did amazing.. She enjoyed every bit of it and hated to be put back in her car seat. Then we took her to the shower on sunday and a lot of people finally got to meet her for the very first time. I found the cutest little dress for her and needless to say the hairbow didnt stay long.. And she just worked it.. such a little stinker. pics to come soon.
We started the medication for her eye on tuesday, so far so good. Her eye actually started coming down prior to taking the medince but we wont know for sure until we get another MRI. Right now she is scheduled to take the propranol every 8 hours. She isn't fond of the taste but she takes most of it down. I'ts just a liquid medication that we give her through a syringe (not  the one with the needle, just the other one) She is such a trooper about it though. She got hooked up to the portable ekg monitor on thursday and it looked like a ipod. Thursday was the first night she was not hooked up to anything that would beep or alarm me as her ekg monitor had four wires to her chest so we couldn't hook up her apnea monitor.. needless to say i was up every few hours but it wasn't too bad. Since being on the propranol though after we give it to her at 10, her heart rate (apena monitor) goes off like crazy. Waiting to hear from the cardiologist what he suggest to do and to see how low it is going.. It was quite scary at first but now  i just want to throw the monitor out the window..
We also got to see some of our nicu staff yesterday as we went up there and took them left over food from the shower. Too funny to report that they weighed her real quick and she now weighs 9 lbs 9 ozs.. wahoo..

we are happy to show also that our girls finally made it to the nicu board. In the nicu there is this in memory/honor board. We paid and filled out the form and it took forever and lots of calls but it's finally done.wahoo.. enjoy..

Monday, February 20, 2012

Wahoo.. Treatment

Sorry that i didnt post sooner as far as treatment goes but it was one tiring week. Scott ended up getting the stomach bug and of course it also had to be on Valentines days so needless to say i was home all week taking care of him, trying to get the house sterile so we didnt get it all the while taking care of Mackenzie as well. So needless to say, i was pretty tired. Although Scott was miserable in bed he still managed to not forget Valentines day.. He hates that day because he thinks it stupid that they make a big deal out of one day just to tell your other one how much you love them when he does it 364 days out of the year.  But he mangaged to put a box at the end of the bed that was already wrapped and this is what I opened.
My beautiful necklace in honor of my precious angel. This gift by far is the best gift ever and it touches my heart every time i look in the mirror.


Also despite everything last week, Mackenzie had a meeting with her Step Ahead  Coordinator, Kathleen, who we so love..and look what Pumpkin did. We are so excited. We have to keep practing but i'm so glad i got it on video and she did so awesome.

video

sorry it's sideways, for some reason i had more problems loading this go around.  Enjoy

So on to treatment.. As most knew we had a appointment with the cardiologist on Thursday.. And just incase we haven't already told you guys which i'm sure i have, i have to say it again, We love Dr. Luther Williams. He was so ready to start treatment but here's why we can't start it until tomorrow. Well first thing was, we apparently have to go and pick up the medicine first, then take it back to them because they have to adminster the first dose. (yeah it's just like giving her her prevacid but ok whatever) Well then apparently after we give to her, we have to go back in 48 hours and they are going to connect  her to a ekg machine for 24 hows to see how or if it is effecting her (this is something we will be coming home with).. Well with it being a thursday, we couldn't go back in 48 hours as they are closed on weekends and then today being a holiday, we couldn't do today.. So tomorrow we start. she will be getting .65 ml of propranol every 8 hours so it will be 6,2, and 10 are her times so we have to go back tomorrow to see Dr. Williams so they can give her the first dose at 2. Still not sure how long she will be on it but her eye is still coming and going.  So i'm ready and can't wait even though all we are doing is giving her medince but still. I"m just happy to finally have a plan in motion.
Here is a pic of pumpkin this weekend. We finally got to try some jeans and they semi worked. She is so like mommy, can never find the right jeans. :0)

She weighed in at 9 lbs 1 1/2 oz at the cardio office.



Friday, February 17, 2012

6 Month Letter from Daddy...

Alexis,
I can't believe it's already been 6 months since you left us.  You were such our little miracle and now your our little angel...  I would have gladly gone in your place!  It feels as though the world has moved on, however for me things still seem to be in a fog.  I feel like this is a dream that I can't wake up from...
I pray every night for you and understanding of why this happened, however have not yet got answers.  I know I will probably never know, all I can tell myself is that there's important work for you to do...
As a father, I'm suppose to protect my children, but in this case, I was totally helpless.  I think this has multiplied as well due to my career field, protecting those who can't protect themself.  I have never felt so helpless in my entire life.  The last six months seem so surreal to me, as if I'm watching my own life from someone elses's eyes...
I try to be strong in your absence for your mommy and sister, but honestly it's really difficult.  I still dream of what it would be like if you were still here with us; how our lives would be so different.  I can still picture you and Mackenzie playing together and growing up together...  Sometimes I think you come visit her because she just stares off and smiles and seems to get really excited.
Baby girl, you are missed as much today as you were the day you left.  I can't even begin to tell you how many people you touched, including people who never even met you...  I can honestly say I'm a better person for knowing you and being your father for the short time I was and the only thing I would change is to be holding you in my arms right now...  Love you always and forever,
Daddy

Monday, February 13, 2012

I get a little bit stronger....

Even though i know Sara Evans is talking about her divorce in her song Stronger, I can't help but think everytime i hear it, it's my little theme song to myself. Each day, each person brings a new challenge for me and I feel like each moment is testing me to get me where i need to be. Since losing Alexis, I can't help but feel lost and although everyone keeps telling me that I have Mackenzie, no one can truly understand the void until you walk in a twin angel mommy shoes (and goes the same for a angel mommy, but the void is just a slight different when it's multiples) Although my post have been a little delayed than they use to be, I hope to keep this going for as long as I can. Not only as my personal log but for others who I have meet/talked to through this blog who have felt the way i have felt but always though they were alone this whole time. So to those who feel lost and alone on this unknown journey, heres to hope and the future.... Here's my hope/future...

So lets see, all the things that have transpired over the past week or so since my last post:

Two new little angels gained their wings last week. I didnt know the family to  one of them personally but I did get the honor to meet the other one through photos as I  knew his mommy from way back when although it has been a while since we have talked. McKinley Chase Harrleson got his wings after 3 days and I had the honor of attending his memorial service. This was the first service that I have been able to go to since the passing of Alexis and it felt like it was something that I had to do. Not only for the family but also for myself. Without hesistation or thinking, I knew I had to go. It was where i needed to be. Leading up to the service i played over and over in my head and kept telling myself that I wont cry like a baby and I can do this. I had to keep reinfoicing myself that no matter how hard it was going to be i had to go. With the help of two other angel mommies and my very supportive friend Tina, the day came and off we went. I was so nervous and was shaking just walking up to the church, I aske the girls if we could sit in the back just in case.
The program was beautiful as their was a note from the dad and one from the grandmother. It kind of reminded me of Alexis's as we put a poem on the back of hers as well. Then my emotions kind of skipped a beat when i saw there was going to be a video played as well.  As most of you know and if you scroll through, there was a video we put together as well for Alexis's funeral. I told the girls that if they play The Band Perry, If i die young song, then I would have to leave. I am still to this day unable to hear that song completely through as that is what we played for Alexis.  Thank goodness it wasn't the song played but it was such a more cheerful song as it was a song that one of their other little boys picked out i think they said it was from Dolphin Tales. 
I am so PROUD of not only myself but of my other angel mommies, Ashleigh and Jessica.  We held up so good with the exception of the video but we all agreed that the pictures hit home for us as that was just all of us a  few months/weeks ago. We didn't cry uncontrolablly as i think we were all expecting to but I think it brought a new sense of peace to all of us.  We all felt like we were all where we needed to be in support of the new angel mommy as well for each other.  I told the new angel mommy that she was not alone when we got a chance to talk the family and she told me she was glad to hear that. That touched my heart.  Its kind of like, if my pain can bring someone else comfort by me being there or just sharing then maybe that is what all of this is suppose to be.  Through meeting this angel mommy I actually found another twin angel mommy and she told me how she felt alone. I reached out to her and shared her my story and my feelings and she told me that is exactly how she has been feeling.  To hear someone actually say or write what you have been feeling/thinking it's quite a rush all in itself.  It takes moment like these for me to see how far ive come even though everyone is reminding me constantly.. I just can never see it for myself most days.
I was also proud of myself also when i had another lady i met, i did so good in writing telling her our story, ididnt cry or anything as i wrote, but she came back to me and told me that she absolutely loved how i explained to her our story. (we got to talkinga bout kids) and I explained to her how I have 2 kids. 2 little girls, one is our earth angel and our other one is our angel above. I got to meet her a few days later as i was buying something from her and I didnt start crying till I started from the beginning (how i ended up going into labor) I guess because I still can't help think, why am i being punished. I already went through the pain of ivf then the pain of the delievery.. why put me through all that just to add to it ya know.
I am finding more peace with being with Alexis. It mainly opens the wounds so much more when i go and see her and it's a special occassion.But most days now when i go to visit, it's very peaceful and we talk and have lunch together. I dont cry the whole time I"m there like i use to do nor do i feel the need to bring the box of tissues out of my car. I love telling her about the latest new and when it's nice outside, Mackenzie gets to come and sit with us. Everybody keeps telling me though that its just her body out there and that she is always with me.. but thats not what it is for me. I feel like she is with me more at her gravesite than she is anywhere else. Although i talk to her in the car and wherever i'm at, its different when i'm sitting right next to her staring at her headstone, feeling the wind blow when i ask her questions or tell her stories I just feel her there so much more with me.
Oh and also, you guys would be proud, i know most of my friends are giddy for this, but i finally gave in to letting them throw me a baby shower. They are going to have me a dipaer/wipe/formula shower at the end of the month. Its going to be one big one combined so knock everyone out at one time. I'm nervous but excited at the same time. It's just a little hard to get out of my head tha tthe last time I had my big shower scheduled, it was actually on the day we had to bury Alexis. :0(

Also daddy and i got to go out this weekend. The first time in a very long time. Auntie Katie came and baby sat for us. We had so much fun as it was good being out with friends but it was still different as I knew we couldn't stay out past 1 and I couldn't drink like i wanted to. But i had to be up at 530 the next morning to feed pumpkin. I didnt have the luxury like my other friends to have mommy and daddy keep our kids for us the next morning so we could sleep in.. You guys are punks but still love yall.. heheheh.  But it was still good times and needless to say i was still tired..
I had a very busy weekend as my nephew also turns 3 today but his birthday party was saturday at Edventure. Boy was that a adventure at 9 in the morning.
We also got to see our "blonde squad"/ nicu nurses as I got the honor of being invited to one of their baby showers, KatieBeth.  KatieBeth will always hold a special place in our hearts as she has been there and for us with both girls through her "colorful drawings", late night conversations.. She means the world to us and we couldn't be more excited for her first bundle of joy to come.

The ever so lovely KatieBeth

Some of our amazing NICU nurses. We love them so much and Mackenzie was so happy to see them all.

We are happy to report that Pumpkin is 9lbs now.. Yep, can you guys believe it. Well she actually weighed in at the doctors office at 8lbs 15ozs on wednesday, so she just needed another ounce so we are pretty sure she did that over the weekend. We finally got word yesterday that now the cardiologist are going to take over treatement for her eye so hoping this is the week we can start. We also got good news that because her cardiologist feels pretty comfortable, we get to do outpatient treatment and no hosptial stay.. wahoo.. we love dr. williams.
Overall things are great.. She loves laying on her play mat and she just kicks her little legs. She is still getting the thumb sucking thing down although she is trying more for her whole fist now. It's still so crazy to know that there are clothes now that i'm haivng to pass down because she can't fit them anymore. It's just too cute.. She is such a little stinker..
But here's to treatment on her eye soon and us both getting stronger as each day passes..

Thursday, February 2, 2012

Just wanted to share...

To my fellow blogging friends who dont have facebook, jsut wanted to share with you a few pictures of mackenzie over the past few days. She is just getting so big and just becoming such the stinker. We still have no update on doctors yet and although i've only had one break down this week thus far, i'm doing ok.. Just gotta cry and let it out and then pick myself up and go.. HOpe everyone enjoys.

Mackenzie celebrating turning 6 months old with her sissy.

This was her last night, she wore herself playing on her mat as mommy was still working on getting her room together.

This is Pumpkin this morning with Daddy. She loves spending time with Daddy.
Check out her little chunky self.. it's amzing to see how far she has come.