Monday, April 16, 2012

8 Months and 17 Days with a few changes.

Today marks the 8th month annivesary to when our sweet Alexis got her angel wings. It doesn't seem like it's getting any easier for me as each annivesary comes near or passes.  Its always such a heavy/bittersweet heart for me because I look at Mackenzie and see all the things that should have been and all the things that have been possible. I miss my little girl every second of every single day..
For me a lot has changed in 8 months and 17 days.. Not only physically with pumpkin but just everything all around and then there are some things that still haven't changed.
Not Changed: My saddness, the clothes that scott and i wore the day we got the heartbreaking news- they still sit in the corner of scotts room untouched. I haven't found the heart to touch them yet or to pack them away. I'm still not able to face large amounts of crowd where the focus is on us but you guys would be proud to know that i made baby steps. I did end up going to the poker run but i kind of hid behind the scenes.I wasn't able to go up in front of everybody with scott or mackenzie when it was time, needless to say i stood in where no one saw me with a dear friend and cried.. it's just still so hard to swallow everyones love,kindness, generosity and the still "i'm so sorry" look you get from everyone.
Changed: Pumpkin is eating rice ceral from a spoon, she is able to hold her own bottle and she now reaches out for it. She is beginning to sit up now with a little bit of assistance from her boppy or whatever is near.. She is just as jumpy as she can be. She fits a little bit better now in the excersaucer and is actually playing with things on it. She is smiling much more, she is so much more alert to her name and things going on around her..
All in all, Pumpkin has been a true blessing with prayers being answered each day. She is our true miracle baby and I coudln't imagine life without her... check out what really touched me today. (see below)

Monday, April 9, 2012

Happy Easter with Updates..

We had our first easter and boy has it been a busy one. But we are very happy to report that we actually got to go to church for the very first time with Mackenzie and it was quite special with it being easter and all. She did so good. She slept for the most part but then she just wanted to look around. Church was quite crowded as to be expected for easter. Pastor Hayes always puts on a good sermon and we have truly missed him and was very happy to see him. We look forward to many more church services to come now that pumpkin is allowed to go. Scott picked us all out easter baskets on his own which i'm so proud of him and he did a very good job. He got Mackenzie a fashion diva basket, with her very first little barbie doll to play with, he got alexis a princess one with a barbie doll as well and he got me a princess one with a wand and all.. ( you are never to grown to get a easter basket)..
daddy and pumpkin at our first church service

us girls and our easter basket..

Pumpkin had a eye appointment with Dr. Cheeseman as well last week. He is still very pleased with the way her eye is looking. We are looking to do a mri towards the end of next month to officially see if the tumor is gone or not. He said currently she may look a little cross-eyed but it's because the bone in her nose has yet to fully develope so just give it some time. It is hard to say if she will be cross-eyed or not.
We are now up to 2 servings of rice ceral a day which is quite exciting. She is doing really well with it. We will progress as each week goes until we go back and see dr. Cope next month for her 9 month check up.. wow. can you believe 9 months.
Overall she is doing really well. Pumpkin is a little over 11 pounds and she is slowly growing now but stil growing and that's all that matters. Her teething is getting a little worse but that's ok as i know that means her teeth are coming in which is still so hard to believe.

But i'm telling you, scott and i dont hold our breathes for long lived good news right now.. I not only say we had a busy weekend due to that it was a holiday weekend but we got word on friday that Scott's dad went into full cardiac arrest on friday. He collapsed at church and thank the lord there were two women there who knew cpr as they adminster cpr until the ambulance arrived and that is the main cause as to him still being a live. (cpr) His heart did stop and they had to shock in the ambulance from what we were told. Right now we are not getting much of any  news. He is currently still in icu at providence hospital. He is intabated and sedated but stable right now. They keep running a bunch of test but still nothing. They have told us they think he had a stroke and heart attack but not quite sure which one came first. The only good news we can report right now is that they did a cat scan to look for brain bleed and that came back negative. To add to the rest of this bad news, we just found out that he possibly has lung cancer and went for the biopsy this past wednesday.  I will continue to keep everyone updated as we are updated but right now we are still at square one with it all.
Scott is hanging in there to the best of his ablity but you can tell by the looks in his face it's really really hard on him. He's quickly mentioned that it's hard because all the mointors remind him of the nicu as it's all the same noise. I have not been able to go back because pumpkin is not allowed in the icu but i really dont think i can handle it as the hospital he is at is not to far from where we were at so it's the same route for us ya know. So me and pumpkin hold down the fort for scott and try to stay strong for him.  So please keep scott's dad, Don Barber in your prayers.

Some fun stuff coming up that i would love for you guys to be a part of if anything is the following:

As much to my objection and Brad White and BIMC family, i love you guys, but it's still hard for me to deal with such large crowds that's going to put focus on us... I wanted to at least share this for them as they have done so much work and have done it with such love. We can't thank you guys enough and are truly truly blessed to have such friends who care, support and love us so much.
Just in case for you guys who dont know or are new to the blog, the BIMC is a motorcylce club that Scott belongs to. They are the Blue Iron's.  They are hosting a poker run for us on April 14, 2012, registration begins at 11 a.m. at Wet Willies in the vista.
Here is the flyer for it. Sorry for the two part but that is the only way i could really attach it was to snip clip it from words.

The next exciting thing is the March of Dimes walk on April 28, 2012. It's a 6 mile walk but for those who know me, know that probably wont happen, but i'm gonna try my best in honor and in memory of our girls. Our team goal is $2,000. Please join our team: Barber Miracles or please consider donating to March of Dimes to help in the fight again prematurity. To join or donated to our team, please click on the link below.

Sunday, April 1, 2012

Maybe if i type it....

People go to couseling to figure out what's going on in their heads and it's the counselors job to dig until they get to the core/root of the problem  even though that person isn't really saying what they want to say. In my head I battle back and forth how i'm really doing and how i'm really holding up and in my head I never have a winner. So i figured maybe if i type it then maybe my core/root will come out. So here goes...

Just like tonight even at 1230 am knowing i have to be up in about 4 hours, I still can't close my eyes. There has been so many countless nights that when I close my eyes, bits and pieces of the day leading up to us losing Alexis to the day we had to say our final goodbye fill my head. I think when everything happened and still having Mackenzie in the NICU, I had to block it all out. I couldn't let Mackenzie feel/see my hurt and pain because she was still hanging in there for the fight of her life and it wasn't fair to her. But since being home and maybe after having a "good day" I can't help but stare at how peaceful Mackenzie is sleeping and for some reason as much joy and happiness that brings me, it also brings me such saddness and maybe that is what stirs up the memories.
There has been only 3 nights, one being tonight, to where I've actually had to curl up to Scott and have him hold me because I can't stop crying. Most nights i can do it on my own. I've stared at Mackenzie for hours tonight and i'm so thankful to have her to stare out but yet in the back of my head, I know Alexis is suppose to be with her.
I hoped to have progressed some today as I finally filled one of Alexis's hurricane globe with roses that a dear friend engraved for us with her initials and her dates but that was short lived as I pass the pictures I've printed but have still yet to go through of our last final hours with Alexis. Even my sunday visit was different.
I'm not sure if i evered blogged this but I doubt i did as I know i still kept most intimate details to just Scott and I during most of that day but maybe it's something I need to get out. (and although if it doesn't sound complete most likely it wont be because it's still so hard to share such details so I will just leave it at that ) Maybe like most things, it's something I  need to face dead on... On our final night with Alexis, they had us a different room from our original room. As all the rooms in the NICU, the doors all had like a long window pane in there. There was no curtain or anything.  I told Scott that night that there was no way I would be able to hand Alexis off to anyone and I didnt want anyone to take her from me but we both knew that I had to leave the room at some point, so I wanted to lay Alexis back in her bed, all neatly tucked just like how she was suppose to be every other night. I knew that was the only way I was able to leave her and say goodbye to her and that is how I wanted to remember my final hours with her.. As we did such, it took all i had left to walk out that door and once outside i clinged/clutch to the glass on the door with my hand to the pane in such tears..
Today felt like that day of me clingy to the glass... Very rarely to Scott and I go see Alexis in the same car as we always meet there or I always go by myself but today we rode together so i sat in the back with Mackenzie as always. I knew already it was a hard day just dealing with the pictures but I found myself, holding the window as we drove away from her grave site and I felt like i was in the NICU all over again on that painful night.
Its hard describing how i feel when all that comes out of my mouth is that I'm sad. And then it makes me sadder because i dont know why i'm so sad.. I have such this little diva that keeps me on my toes 24/7 but yet I feel that this saddness overcomes me more ... It truly feels like a nightmare that I'm just never going to wake up from.
I feel most times that the root/core of  it all and maybe why I wont allow myself to get to happy is because I feel such guilt for doing so. I feel that by being so, it will feel like Alexis never existed.. I feel like my life is on hold because it wasn't suppose to be moving on with just one little girl it's suppose to be two.. maybe that's what it is, maybe it's guilt that's not allowing myself to get over this "depressed' hump.. maybe it's nots.. I never for one second of any single day ever every feel like Alexis ever existed or that she isn't there.. but yet i dont know how i'm suppose to overcome the guilt to just let life happen...
i think i've cried myself so much tonight that finally my eyes will allow me to sleepf or now with this headache.. so ill leave this as incomplete for now...