Wednesday, November 7, 2012

To another year..

I'm sure as most parents cherish every milestone and every annivesary to things, i truly believe though that a preemie's parent/nicu parent, milestones and annivesaries take on a whole new meaning. It shines a different kind of light than a "normal" birth/child/milestone.. The way you remember things from each day to each milestone, just in a instant can take you back to the beginning days where every second of every day you were thankful for as that represented another second your child breathe and another second that passed closer to hours to days of taking your baby(ies) home. One less second of monitors beeping, one less second of worry and the feeling of being scared, one second of a miracle..

Today believe it or not, which it took me a bit when i first woke this morning for it to actually hit.. but believe it or not, today marked the 1 year annivesary of when we got to bring our girls HOME.. It's been a full year that Mackenzie has been out of the nicu and Alexis's phyiscal memories close by for us to see everyday. When Alexis's gained her wings, the nurses put all of her things in a baby girl box for us and it stayed in the closet in Mackenzie's room. I didnt want to bring it home as for me it felt like i was only bringing one baby girl home when i needed to bring them both home at the same time. I really couldn't even bear to look to see what all was in it.. It was very hard.. I think i only went through it once or twice and it was close around Alexis's funeral and that was the only time I could watch her tribute video as well. I only had the strength to do so around Mackenzie.



A year ago today, Scott and I woke up, very tired because we had to do our 24 hour stay that week end before and just didnt get much sleep. We go to the hospital and we waited.. We started packing all of Mackenzie's belongings and we really didnt realize how much we had till we started packing everything up. It felt like forever.. We had to get all the paperwork done, we had to get cleared with the oxygen tank people.. We thougth we were gonna get to go home that morning and then that mornign turned into that afternoon.. Hospital policy was either they could roll your baby out in the "crib" thing or you could carry your baby out but you had to be in a wheel chair.. For me this was such a bittersweet moment. The moment new moms are so excited about holding their newborn babies and getting wheeled out of the hospital with all the balloons and flowers.. i had this moment 108 after my girls birth and I did get to carry my girls out just in a different way and also what felt like the whole house packed with me..
 
 
Our first stop of course was for Mackenzie to visit her sister and then on to her real home.. We got home and Scott and I looked at each other in shock, amazement, saddness, scared all in what.. It was kind of like that "now what, omg" feeling.. We got Mackenzie all hooked up to her oxygen, pulse ox and apena monitor and then we just sat there. First night of sleep didnt really happen. We were so use to the nurses always being there and doing her every 3 hour feeds.. Now it was just us.
 
A year later and it's just us.. It's been amazing how far we have come.. Every day has brought a new challenge that pumpkin just surpassess and everyday i still look at her and cant believe she is ours.. We went from 7 doctors to 2 doctors, the only machine ever next to her that makes noises is her ipad. She is crawling all over the place. Instead of 2 oz bottles we are 8 oz bottles. Scott and I are still and probably will forever be figuring out how to be parents. We both sleep through the night for the most part.. Before it was the worry sleep, well after the first few days.. Then we became too dependant on the machines. We knew if something was wrong, one of them was going off..  She is eating table food now and also has teeth (which i found out by her biting me) We get to take her all over the place now instead of secluding/confining ourselves to the bedroom..She babbles all the time now.. ( i think she gets that from daddy.. heeheh) She has the fattest little thighs and she is wearing size 9 month clothes compared to preemie clothes.. The only thing connected to her similar to wire wise is her paci..She puts her hands up like she is telling you no, giggles at everything.. She is evening beginning to kind of wave like.. She pulls up at everything and i love it when she crawls up to my feet and pulls up and hangs on to my legs from there..
Today we went to see Dr. Moore, my ob, as we have not see him since my 6 week follow up after giving birth and he never got the chance to see the girls in the hospital as he wasn't there for the delievery but he's been with us from day one of trying to concieve so that as just a added bonus and the look on his face.. it was quite apparent of how far we have come and how happy he was to how far we have come and overcomed.  To the year and the next 100 more to come..
 
 
Our Diva in just one year..

 
 
 


Friday, November 2, 2012

A different Halloween

Its still so hard to look back and see that it was only last year we were spending Halloween in the NICU and sorting through candy that people had brought us and also the big bag we brought up for the NICU nurse. To us it was still just another night spent in the NICU while the outside world was having fun, living their lives.  I scrambled to find something to fit Pumpkin as we e finally got to put clothes on her so of course i had to dress her up..I knew i wanted her to be a pumpkin only because of how fitting it was but i also wanted something for daddy as well and i knew if we were to ever have a girl, a Duke cheerleading outfit is a must.. So I scoured the internet trying to find stuff small enough and found that people with preemies also used Build-a-bear outfits.. I was like no way.. But of course.. it fit our little pumpkin.
I couldn't believe when i saw the little cheer outfit, that was the closes to Duke blue that i could find but it was perfect then Auntie Katie found her the perfect little pumpkin outfit..  She loved the pumpkin oufit.. she layed in it for quite some time actually..

This year, she got to be batgirl. I wanted to think of something different but also something that related to daddy.. For those that dont know, Scott's SWAT Team logo is the batman symbol, so I thought, how fitting she could be "batgirl".. :0)  (and also cause the wives of the swat team are named "operatorettes" since the boys are "operators" so we have batgirl shirts as well- so she also got to be my little mini me..hehe)This year we were quite busy with Halloween stuff but pumpkin didnt get to go trick or treating quite yet because she was actually sick. We had to do trail of treats before and the weather was just completely horrible so needless to say she caught a little cold, but we stayed home and handed out candy which she seemed to enjoy looking out the glass door..

I know my little pumpkin has come so far and watching her everyday never seems to amazing me.. but when i put pictures together, it still brings such tears to my eyes.. It melts me in so many ways it's just indescribable.  So for those who have followed our journey from the beginning, I hope you enjoy this picture as much and it melts you the way it did me..

Thursday, October 18, 2012

Pumpkins 2012

Our church did family night about two weeks ago and i'm just now getting around to sharing these pictures.. Scott was out of town this weekend so we tried to get out and do as much as we could to keep us busy and our minds off the fact that daddy was gone for the first time since the girls were born.. It was quite different but i was very successful in staying real busy and the weekend just flew right by..






I really do not know why these turn the way they do.. sorry.. If someone can tell me how to roate them on the blog that would be awesome.they had to be rotated when i saved them.. maybe i shouldn't rotate to save them from the download of my iphone.. mmm..

Monday, October 15, 2012

National Infant Loss Day..

Today is National Infant Loss Day. Please join Scott, myself and Mackenzie in lighting a candle at 7 p.m. for one hour not only in honor of our daughter Alexis but in honor of all babies who lives were too short on earth. We will be with our little angel tonight lighting ours with/for her if rain holds off. For those that do, please send me a pic or tag me on facebook to show a wave of support. Thanks.

Tuesday, October 2, 2012

Oh the crud

Well the crud has infected the barber household times 3. First daddy gets sick. He goes to doctor on Tuesday and starts his meds. Mommy gets sick Thursday and goes to doc, gets two shots in the hiney and calls it a day. Pumpkin gets sick on Friday and goes to doc. Thank goodness for insurance. Well if not a week later daddy and daughter want to both copy each other and both get worse and both end up back at doctors a week to date both with sinus infections. Lets just say one tired mommy. Well as daddy and pumpkin start looking on the upside , my bronchitis decided that it was only taking a mini vacay and boy did it return with a vengeance. So needless to say I ended up back at doc this past wed feeling the worse I've ever felt in a long time and since I just had the "quick fix" shots a week prior, it was too soon for me to get them again. So needless to say, I was in bed from we'd till this past Sunday. Oy vay, we are all looking up on the bright side. I just can't shake this nasty cough I have and pumpkins is more so teething.
We can see two little white teeth on her bottom gums but they have still yet to break free. She is crawling more like she is a master pro at it but more so also she is trying to stand up on her own. She is pulling up on everything and she lets go for a bit but loses her balance. She will now also walk if you hold her hands which is the craziest thing.
Hopefully next post I can figure out this new iPad and how to save pics from my Fb page and I can shoes her lastest peek a boo pic to where she is now beginning to stand/pull up.
Besides all the sickness, all has been pretty well in the barber household.  Haven't had much chance to do or focus on anything else but hopefully soon.. Can't wait to share pumpkins Halloween outfit so stay tuned.  :0)

Thursday, September 20, 2012

And heres to surgery..

We went for our follow up eye appointment this past tuesday.. and yaay it was with Dr. Cheeseman. He ended up going to MUSC which is not a bad drive for us at all but we would follow that man anywhere.  We went to the goose creek office which is about a hour and half give or take traffic. He is quite please so far that the tumor has not come back being off the meds now for almost two months.. But now he wants to do a "surgery" to help correct a weak muscle from the the tumor and her prematurity in the right eye. If left untreated she will be crosseyed in the long run. What he wants to do is go and cut under her eye, pull the weak muscle back and pull a stronger muscle over it. He said that if the weak muscle continues it's just going to tell the brain that it doesn't want to work anymore thus the cross eyed look. It will be a outpatient surgery, done in about a hour or two and he said she should bounce back by next day.  We go back in nov for a follow up or we can decide to go ahead and do surgery.
We have the option of trying to continue to strenghten the muscle by her glasses and patching but our strong will child is having nothing to do with either. So most likely surgery is in our future. I've spoken with other moms who have had the surgery and they have had good results and its not as bad as it sounds.. But you know us and the word "surgery" just never sits well nor do i think it ever will..  It will always be in the back of our head of how we were told Alexis needed to go in for surgery and not even a hour later, we get the bad news.. I think life stops for a brief for scott and i everytime we hear that word..
Overall pumpkin is doing well. She has had a little crud this past week but Dr. Cope said that it's not settling in her chest which is a good thing but it's a combination of her still teething and just a little virus going around. I actually had to make my first "sick baby" appt last week because she just had this little congested cough and daddy and i have both been sick as well so wanted to be safe than sorry. It was so weird and i felt like such a bad mommy cause i actually sat in the "sick baby" area as well at the doctors office..  For those who dont know, most peditrician office has a "well baby" area and a "sick baby " area.. i"m glad though we were the only ones in that waiting area and we got called back pretty quickly.
I did feel pretty proud though when we got a nurse we haven't seen in our past few visits here (we had her early on) and she was amazed about how big pumpkin has gotten. She weighed in at 15lbs 12 ozs..Hard to believe that i will have a 16 pounder on my hands before i know it.  She has been eating so well and i've even been given her table food. only soft stuff though that she can still mush as no teefeys have come in yet.. She loves her some puffs and her mums mums as well..
She is crawling all over the place now and she thinks mommy is a jungle jim when it's time to lay down. She is pulling herself up way more and has also figured out how to turn around in her high chair thing that attaches to the table and stand up in.. Lord help us..  :0)

Friday, September 7, 2012

Sergeant Daddy

Sorry that it's been so long since my last post. it's been quite the month. A lot has happened so to speak and then time has just not been on my side..  But most recently and it's because i want to shout it out... I am so proud of Scott and all the work and time he has put in  and through all that lifet has thrown at us, his hard work has paid off. Last friday, Mackenzie and I made our morning call to daddy to check in with him.. and he just nonchalantly said, " Mackenzie, you can call me daddy  sergeant now" and i was like what.. huh..

Yep, Scott got a promotion. He went from Master Deputy (next after sgt. on a shift) to Sergeant over his own shift.. He started this past wednesday and boy did they move him quick. He is a little bit further away from home but we couldn't be more proud of him..  We love you so very much Sergeant Daddy. So be safe out there..
Sergeant Barber


Pumpkin has been doing good. The last I weighed her on the scale, she was 15lbs 6 ozs.. She is eating so much more these days.  She only cares for the bottle in the morning, the rest of the time, she could careless. She wants her baby food and rice ceral and her puffs which she has now figured out how to eat properly.  She is crawling also.I really thought she would walk before she crawled but apparently she is a electronic baby and took off when i put the dvd player down on the floor with her.. I can't upload the video for some reason. :0(
She still wont keep her glasses on, but we go to Goose Greek  and see Dr. Cheeseman in two weeks so that will be good to get a update with him and to see where we are out. So far the tumor doesn't show signs of reappearing as she has not been off the meds for a little over a month. She has now gotten to where also she wakes up in the middle of night and wants to lay with mommy so needless to say i give in so that i can get a few hours of sleep.. Overall she is doing really good.. still being a little diva. We got to do our first parade this past labor day. Scott and his motorcycle club road in the chapin parade so we tagged along and rode in the truck and threw out candy. She had a blast but it was so hot.. she was just stinking cute as always.
We have a new biker babe!!

Hanging out before it all begins..

I love my daddy time..

I want to drive daddy, I want to drive



As most of you guys know as well, last months was Alexis's anniversary.. I took some days off from work just because i really and truly didnt think I was going to be able to cope. It was hard knowing that it has been a year and that we had to celebrate her death/life at her grave marker and not have her in our arms. I really thought i was going to wallow and just stay in bed all day.. But to my surprise, I wasn't. She was with me the whole day and she kept pushing me to get up. She pushed me not to be sad. She pushed me to get up at my usual time and feed Mackenzie and with doing that and having Mackenzie in my arms, it made me rejoice because to hold her and to just stare at her, she has come such a long way and that's what we need to rejoice in and not be in saddness because although Alexis is not on earth with us, she is living with and in us..

Tuesday, August 7, 2012

HAPPY 1ST BIRTHDAY!!!

Can't believe we have come a full year for our girls.. Still seems like yesterday we were bringing them home from the hospital.. We celebrated their birthday in full diva mode.. We had a swim party although it go rained out pretty much, i dont think that stopped anyone from having a good time as we had so many people that came out and celebrated with us. We ran out of amazing food that we got catered from Bailey's Eatery in Chapin and Mackenzie loved her cake. Needless to say she was pretty wiped out and we are still working on opening up all the toys she got.
We are also happy to report that we also had our one year check up.. So not cool as she had to get shots.. Mackenzie is weighing in at 14 lbs 10 ozs. She is completely monitor free and medcine free. We officially got cleared from our cardiologist. (not sure we are going to know how to act not having to go every 30 days) So life is still pretty surreal right now that we actually have a "normal" baby..  Thank you to everyone who loves us so much and still continues to give us so much support as we still continue on this life of parenthood.. The day has been bittersweet as any celebration is i think from here on out, but as you will see in the pictures we still incoporated our sweet little angel alexis.  Im not looking foward for her annivesary to come.. I wish i could just take two ambien's and not get out of bed but i know that's not a option.. (sorry for sideway pics.. i dont know why it does't that)
Birthday Food..

Balloons for Alexis- our friends wrote messages we sent them to her..

True Diva.. :0)

She loved her cake..

So excited to see some of our NICU graduates that came as well..

They all were in the NICU together and now look at them..

Birthday time with sissy..

Daddy and his girls..


Mommy and girls..

Our family birthday message to Alexis..

Had to go and visit the nicu on their birthday..

This truly touched me as this is the memory board in the nicu, and as we were chatting with one of the nurses, Mackenzie reached back and started touching their names..

HAPPY BIRTHDAY SWEET GIRLS..

Sunday, July 29, 2012

I have faith, and her name is Lynne...

I've been meaning to post this for quite some time but just haven't had the chance to.. And i really dont like doing two post in one night but i figured if i didnt do it now then I would just lag again and this is something i've been wanting to share for quite some time. I wanted to put this out there as going through this whole journey and talking to people, I've realized that some in our position feel alone and I hope for those who read my posts know that they aren't and that there are other people out there that feel so much of the pain as well.  So here's to this powerful post..
Lynne has been my friend since 1st grade when she asked me to be her friend at B.C. Grammer School in the library. Our brothers were friends first and so we figured that since they were friends, we needed to be friends. Lynne and I have walked different paths of life but regardless we are still there for each other when we need it.  A few years back, Lynne lost her best friend, her brother passed away due to sickle cell.  We've never talked about it much then, but she has been my angel through a lot of my hardest days. And the craziest part about it, it's not like it was something I called her and said, "hey lynne, i'm having a really bad day can you come and comfort me", I guess i need to back up some, when we came home from the hosptial we didnt allow anyone to visit until March as that is when flu and rsv season was over. So once we had our baby shower, i had a calendar set up as to when people could visit so i didnt want to get overwhelmed with guest. So Lynne signed up for a good bit of dinner nights.. And some way, my worst days always happened on her night. And she never knew it until we got to talking. Over the past 2 years i believe, Lynne has gotten into church and has made it a huge part of her life and i love how it has made her glow. Lynne use to be paralegal at a pretty big firm here working 16 hours a day to now being  the childrens program director i think it is at her church.. She is the perfect example of someone who has truly found her calling and she is truly where she wants to be..
Through this all, Lynne doesn't sugarcoat it for me. She helps me understand it. Everyone keeps telling me God has a plan and some say instead of asking why, we should ask why not i, others tell me faith will get me through this all.. And for me i've struggled with all of this.. I go to church and i've prayed and everything but it still doesn't change anything to me.. I have never been as devoted as I probably should be but it's not like i deny Christ or anything... Anyways, the past few months, I've been having a really trying time. From all the stress of Scott's dad and the extra stuff we have had going on with things that have stemed from that from Scott's schedule to never getting a break.. some will probably tell you that i've teddered on the line of depression but i still got up every day and did it... One night i was at my worse and scott was working.. my biggest struggle was how do i get through all of this.. how do i heal past this pain. Scott says his faith keeps him going and to me, I still dont understand how that is.. So out of all my closet friends.. Lynne is the most "church like" one so i figured she would be the best to break it down for me without scripture and throwing the bible at me.  So this time i did call her, she didnt answer so i sulked for a few hours, finally she called and we go to talking and then her phone died.. Crazy enough she was around the corner from our house and just stopped by at 11 pm.  Here's my most powerful conversation that I have to keep replaying in my head and that reminds me to get up July when i'm on the floor balling with such pain...

Lynne said to me (not exactly word for word but for the most part) Its ok to ask why and she did refer to a scripture i believe that even said in the bible ask why,and even though I may not have felt "god was there with me", he has been and I have to look at the good that he has brought out of this. He has given us Mackenzie still and she is stronger everyday considering all the odds, Scott and I have become a lot stronger as a couple, this journey has gotten us back in to church, it has brought a community together with so much support and love, our girls have changed lives with so many of our friends.. But I'm like yes, lynne i see all of that but its still so hard because the day Alexis passed,  I was so strong, we had to make that decision to let her go and we made it and I really didnt lose it until that night when we had to walk out of that room and that was because I saw Alexis in so much pain and connected to so many wires that i didnt not want that for my sweet angel  for my own selfnish. But now it hurt so much and i feel so weak because all i see is the emptyness without her and her beautiful headstone and the grass shape of where her body lays.. And she said to me..

"july, through all of this god has made you a mother and you have done soo much for your girls and you will continue to do whatever it takes for your girls. and because you will do anything for your girls, as a mother, you took the pain away that Alexis was feeling and you are bearing her pain so that she doesn't have to bear it anymore. She is pain free now. "

Lynne thanking you for being my guding angel on earth through my deepest times..





Saturday, July 28, 2012

In 24 hours..

Hey blogging friends.. it's 2:26 am and it's hard to sleep knowing at this time last year, i was laying in a hospital bed upside down trying to prevent me from going into labor.. Scott was freezing in the corner of the room as I layed hot from the leg compressor thinsg on my feet, and i guess it didnt help that he was right under the air and i was around the corner. (the vent was in a odd position) I had both of my girls nestled still in my stomach not knowing what all was to come 24 plus hours later..
It's been quite the year. Its hard not to have so much emotion as my girls turning 1 is jus tnot  any ordinary  turning 1.. having preemies to me and having one as a Angel above, to me it means soo much more.
I want to shower with such joy and excitement that Mackenzie has overcomed so many odds and has kicked butt over all the obstacles she has had, I want to sing at the top of my lungs all the joy she has brought into our lives and everyone else lives, I want to give all the people who have been by our sides and have done nothing but show us such support and has given us such a backbone at strength when we need it a hug.. I want the shady cloud of grey to wash from all this but in reality I know it wont. As we have so much to celebrate in 24 hours, it's hard to let go of the hurt that our Angel Alexis is not with us to do all of this. My tears are not just of happiness but they are still also of pain.We've all come so far and it's still really hard to get pass the fact that although we get to celebrate  life today at their party and tomorrow for their true birthday, in just 18 days, we have to relive and mourn the loss..
Today we are going to celebrate our girls life and of course you guys know I had to go big.. How could I not considering how big they came into this world and how big of impact that have made on so many lives. Scott laughs at me because yes, I even have a dj for the girls party tonight. With all my party decor, I not just going to celebrate Mackenzie today but we are going to celebrate our Angel Alexis today. Although she is not physicaly here with us I know she will always be looking down over us.
So heres to our girls.. You diva's mean the world to me and there is nothing i would never do for you guys (or I guess i will see what happens in the teenage years)... You girls are my world, my rock and my heart.. Happy Pre-Day Birthday!!!

Friday, June 29, 2012

Chicken Little..

So have you guys seen the really cute little movie Chicken Little? it's got the little super cute chicken in it that wear's glasses? Actually i dont think i have seen it fully but i just always thought that the little chicken was just the cutest thing ever.. (i know you guys are going to giggle and tell me how wrong i am but you will see how so right i am. just google chicken little).. hehehe.

But needless today.. Pumpkin reminds me of chicken little. She got her glasses last thursday and suprisingly she leaves them on and alone. The only time she really begins to bother them is when she is tired and she always rubs her eyes when she is tired so she doesnt really know the difference ya know.. but i'm quite impressed with how she doesn't bother them. I think she likes them.
See.. Chicken Little..hehehe.


And it's made her into a rocker.. :0)


We are still waiting to hear from the new eye doctor on when we start to see them. I'm gonna give them through next week as this is Dr. Cheeseman's last day so want to give his office enough to get everything transfered. So hard to know we wont be seeing Dr. Cheeseman anymore who has been so amazing to her and us.

It's even hardered to believe that tomorrow our little Diva's are 11 months old.. In one month, they are going to be a year.. wow.. i'm already starting to cry just thinking that it's been a year already.. wowo..

She will always be daddy's little girl regardless of how old she gets.. (this is how i came home and found them one day)


Wednesday, June 20, 2012

MRI report is back..

We finally got all the specifics this past friday and althought it wasn't the greatest news we were expecting it wasn't all too bad either.
They said that the tumor is still present but that it has shrunk a great deal. They said that it is still wrapped around the inside and outside (in the orbit area) and still compressing her eye, but the good news is, is that her eyeball is now aligned with her other eye, it's no longer protruding. They say that she is farsighted so now she will be getting glasses and they should be here sometime next week so this will be interesting to see how she keep them on. They also said that her right eye (tumor eye) is a little weaker than the left eye and they think it could be due to the tumor so now we have to patch her eye for 1 hour each day to help strengthen her eye.
So now on to the plan: For those who do not know who read this who love Dr. Cheeseman, he is leaving at the end of the month. Him and the university could not see eye to eye so he is leaving and we are not sure where he is going quite yet. Last i heard, penn state was in the runnning but no confirmation yet. So we will now have to be going to Charleston to the Storm eye center to see Dr. Wilson as that is who Dr. Cheeseman feels comfortable with and who he wants us to continue to see. Mackenzie will stay on the medication till she is at least one (which can you believe will be next month) and then they are going to take her off of it to see what happens. She will have monthly monitoring still and we will just go from there. Dr. Cheeseman said that from the research he reviewed, kids over the age of one who were still on the medication had greater success of tumor not coming back compared to kids who came off meds too early. So hopefully another month and half will make tumor go completely away but only time will tell.. If it comes back, then we will just repeat medication again.  So hears to hoping we dont have to go through that. We are currently waiting to hear from Dr. Wilson's office as to when our appt will be so not sure when we will go back for a follow up.
Pumpkin is a little over 14 pounds now. Overall she is just doing so good.. She is sitting up so much more on her now. Still havent' seen the teeth/tooth that keeps nagging her to come in yet. She is always giggling and spitting her tongue out at us so much more. She actually got to ride in her first buggy ride last week without her carset and totally loved it. she just bounced and smiled at everyone.I took her in her first stroller walk though and the jury is still out on that one. She is still not wanting to attempt the crawling thing yet but in time just like everything else.. :0)

Wednesday, June 13, 2012

Still no word on MRI..

Just wanted to let you guys know that we had the MRI this past monday. We have'nt heard anything yet as far as results go. This time around it took a lot longer for the whole process. We got there around 8ish and she was scheduled to go back at 10 but she ended up no going back till around 11 as there was issues of some doctors wanting her to stay overnight and we weren't quite sure why as she has passed the 60 week mark. But she finally went back and we waited for over a hour and finally got word that she was done. I went to see her in recovery and she was just sleeping away. They said she did really good and now we are just waiting for her results.. Cross fingers and toes that we get a good report.

WAITING BEFORE MRI
WAKING UP FROM MRI



Thursday, May 31, 2012

Quick Dates I just wanted to put out there

JUNE 2- FROM 9-2, Estate Sale- We will be having Scott's dad estate sale. Location: 1651 Joiner Road, Columbia, SC  (its right off leesburg road for all my local people) Pleae come out and spread the word as we have a entire house full of stuff that needs to be gone.

JUNE 3- 11:15 am , Pumpkin is going to be dedicated at our church. It's similar to a baptism but not fully. That will be at a later date. We are excited and hope everyone can join us. Its just a quick 5-10 min thing but our pastor is retiring and we wanted to do it with him before he left. It will be at Mt. Hebron UMC off of leaphart road.

JUNE 11- we finally have MRI's schedule. yaay.. We saw Dr.Cheeseman last thursday and he said everything is still looking great and since we have been on the medicine now for 2 months its time. I'm excited and nervous all at the same time because they are going to have to sedate her which always makes me nervous but i'm excited to see if the turmor is gone. After these results as long as there is no tumor she will get to come off the apena monitor finally and come off the meds as well.. yaay..

Pumpkin is currently weighing in at 13 lbs 5 oz.  She is suffering her very first minor ear infection due to teething. Dr. Cope said due to the drainage/congestion it caused the earache.. :0(  So 10 days of antibotics will hoepfully do the trick and that stinking tooth will come in. :0)

Monday, May 21, 2012

R.I.P.

hello friends. I know i said i would get caught uptodate on all the latest news with pumpkin but as usual, Scott and I can't catch a break. Although we thought all was going very well with Scott's dad, he unfortunatly passed on May 12, 2012 at 6:10 am. Scott got a call at around 230-3 am saying his dad was being transported to the hospital from the rehab facility because he started vomiting and that his heart rate dropped and blood pressure went up (or vice versus) either way it wasn't good. Scott went to the hospital, and apparently his father had stopped breathing in the ambulance so they had to intabate again while in ambulance.  Finally after about 2 hours scott finally got to go back and they said the cancer has spreaded to his brain and he had apparently caught phenmoina again. Due to Mr. Barber having a living will stating he did not want to be on a ventilator if it was the end, they had to respect his wishes and shortly after taking him off, he went home and got to go and see our sweet Alexis.  Its a very bittersweet time for us because Mr.Barber never go to hold the girls and now he will get to hold our sweet angel above for eternity. And now Alexis will get to know the grandfather she never got to know.

And thank you everyone for the "1st mother's day" comments/messages but with scott's dad passing the day before and with all that has gone on. I didnt get a mothers' day.. Yeah it sucked but totally understandable.. I just wish all my "first" moments would stop getting taken away or just turn into something else. I just wish i could just have my "first". But scott knows as well and i told him there is nothing that will ever be able to compare tot he angel necklace that he got me for valetines days. i dont think another gift will ever be able to top that and the importance of my necklace. But me and pumpkin and scott got to lay in bed all afternoon and that was good enough as it was just us and the peace of home for a little bit.

In short i will try to get up to date soon but it will be here and there again as there are some legal issues now that we have to take care of that i do not wish to elaborate on right now but pumpkin is up to 13 pounds, we started babyfood, we go to eye doc on thursday and hopefully a mri here soon to confirm if tumor is gone or not.  Overall she is doing great and can't wait to get some more pictures posted soon. Till then...

Monday, May 7, 2012

Finally.. some new post to come..

hey everyone.. sorry it's been the longest delay ever since my last post.. so much has been going on and to not comply it all into one post, i'm gonna do several over the next day or two so please stay tuned.. But this post will just be a update with regards to scott's dad as a lot of people have prayed for him and for everyone involved.. This is mainly also why I havne't been able to blog much.
Oh where do i ever begin.
Scott has been super super busy at work and then when he is not at work he has been with visiting his dad and trying to handle his dad's affairs which is like a whole nother job in itself. so it's just been me and pumpkin for the past few weeks and boy has that been exhausting.. And poor Scott, he is such my rock and forever my best friend as i know things have been stressful on him and i've been truly exhausted with everything and everyone knows i dont do well with stress and exhaustion so needless to say, scott got the short end of the stick with me.. I love that man so much for putting up with my craziness and still loving me for it.  But now we have a better plan and things are beginning to not be so stressed and exhausted on both our ends.
But back to his dad. I swear, i've never seen a hospital jerk you around so much compared to the one his dad WAS at. Scott got back to back phone calls to where one day, it was looking like things were getting worse, then the next day, he was moved out of icu and into a "regular room".  One we were called in to talk about hospice care to now his dad being in rehab.  They told us that he wasn't going to move out of icu, the only move that would have been done was to move him to the hospice tower when the family gave the noticed but then the next morning scott got the called that he got sent to rehab.
A few weeks backs, his dad did end up with low blood pressure, and a fever so they took him back to a lower level icu. They went in and did a "clean up" of his throat area to try to get more of the secretions that were building up in his throat from not being able to swallow and all. They also put in a feeding tube which all that was success.  After the "clean up" he appeared to be talking a lot better to where you could understand him a lot better. But not long after that is when the social worker and the hospital lady (they have a name but totally forgot what it is, but she was like a representive for the hosptial) well they wanted to schedule a meeting iwth us and that is when they told us that we have two options . 1) try to get him better to where a rehab facility would take him or (keep in mind, he had to be suction out every 2 hours due to the build up of the secretations- but because they had to do that, no rehab facility would take him) or 2) go ahead and move him to hospice, which would be pretty much everything they were doing in the hospital.
So they gave us a few days to think on it and we thought it was all a better idea to go to hospice as we didnt know how long it would be to get him to rehab and with hospice room.,we could make it more homey for him and Ryan (his youngest son) could visit because where he was, no kids under 14 allowed.  So that was on a thursday or friday i believe.
so jump to the following tuesday, scott gets a message as he was handling somethign else and couldn't get answer the phone, "oh yeah,your dad is being moved to a rehab facility".. we were like what? huh? you guys were just telling us we to look into hospice and all.
So long story short, Mr. Barber has been in a rehab facility now since last thursday. He is doing really well. He can talk more to where you can understand him. He still is unable to have a lot of movement in his left side but he will be doing physical therepy 5 days a week. He finally got to sit in a chair also last week. He has lost 60 pounds but i guess that's to be expected consideirng he hasnt eaten in a month. Overall things are beginning to look up with regards to the stroke but still with regards to the cancer, they are still not giving him long. The way it was described to us is that  pretty much its his entire right side lung, it's moved to parts of his left and it has also moved to the throat area.  But his dad has proven to be a fighter and he is kicking the strokes butt right now and hopefully that will get him to where he can come home for a little bit and we just do what we can to cherish and enjoy whatever days we have left with him..

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...

Tuesday, March 27, 2012

Hard Copy...

Mackenzie is just growing and growing more and more each day. Scott and I just stare at her every minute we get and just can't help to beam with how far she has come. And boy is this diva such a daddy's girl. Lets see,, what all has transpired over the past week.

Scott and I went to our very first resturant with just us 3 on St.Patty's Day. It couldn't have been any perfect. You would think we have gone out all the time with how well Mackenzie did. We were there for like 2 hours. We went to this place called Travinia's in lexington, they have the best crab cake by far. And we had this super cool waiteress name Krista. She helped make our special night even more special. She was just funny, fun, sincere, and she just made the overall experience so much fun and enjoyable. I think pumpkin is going to do great out to eat as so far she has not had a meltdown or anything out.. she is more interested than anything.
While at dinner, we were talking to Krista and I was telling her our story and of course I started crying. Some days I can tell our story and I hold up ok, but majority of the time, there are always tears in my eyes. Its hard because everyone always asks us how old Mackenzie is and when i say she is 8 months, we get a strange look like what, really, and then it's like I feel like i have to tell the story to explain and then that's whem the light bulb goes off. But Scott said to me.. "baby if you can't tell the story without crying to strangers then maybe you shouldn 't tell them so it doesn't put them in a odd place".. I looked at him and thought he lost his mind. I told him, i could careless what people say, there will never be a day in my life or a single breath that i wont breathe that i will ever "deny" that I have two girls. Although I do not have one here phyically to show anyone, Alexis will always still be there with me  and if makes someone uncomfortable to see me cry then so be but I feel that i ever "deny" that I had Alexis then i think it will make me feel like she never existed and I never want that feeling.. She still continues to live inside Mackenzie and I truly believe she is the one that i picking me up when i keep falling..
Daddy and Pumpkin at our first dinner

Mackenzie had a doctors appt last wednesday with Dr. Cope. She currently weighed in at 10 lbs 14 oz. I really thought she would have hit 11 pounds by then but i'm pretty sure she has by now. We are excited to say that she also got to start rice ceral. So far so good on it. I tried to make it a little thicker and she didnt seem to take to that too well but she likes it pretty liquidly like and apparently i dont go fast enough for her as she screams when i take the spoon away from her or she grips it to not take it away. She is still teething but nothing has cut through yet.  She is now doing this thing with her tongue where she feels like she needs to stick it out all the time and just lick everything, even the air.. it's too funny as she will be laughing and doing it as well. She is still on the propranol every 8 hours. They want to leave that on her it for at least 2 months and then we will retest for another MRI. So far Dr. Cheeseman is impressed as to what he sees so far but he said he doesn't want her to come off of  it too early just because things are looking good doesn't mean the tumor is completely gone yet. We go see Dr. Williams (heart doc) this thursday and Dr. Chesseman next week so hopefully mackenzie will still continue to show good signs, until then she will just conttinue to be diva..
Pumpkin with her new shades.. Diva..



Daddy with his girls.. (3/25/12)
Diva I swear, "mommy i need one more mintute, I do not wish to be disturb."

I dont think i ever blogged this but for the longest time I've been wanting to print the first 6 months of my blog to have for Mackenzie to always know their story and friends told me about blog2print. Its where you can go there, type in your blog and it uploads it either by range of dates or the entire thing. I'm not ready for the whoele thing to be printed yet but I never want her to forget the first 6 months. Well i finally did it. It's taken me 2 months to debate it as it's been very painful to look back on it all. It just pour more salt on the wounds. Well needless to say, i ordered it last week and it came in yesterday. If you blog, blog2print is a must do. I knew what it was when i saw the box on the front door but it just looked like the elephant in the room ya know..I couldn't find myself to open it yet and i finally did a few hours later once Scott got home. It is perfect in so many ways. It was a very bittersweet moment as I was happy it was here but to relive all over i just crumbled. I wasn't able to go through it all yet just a few pages but I'm so glad that I did it and hopefully one day I will be able to sit with Alexis and read it to her. I'm waiting for that day although i know i'm not strong enough to do it now but until then it will sit in her curio cabinet until mommy is strong enough to tell her own story..

My "book"..

Wednesday, March 14, 2012

Gone but NEVER Forgotten...

Scott and I actually went and allowed ourselves to go and watch a movie this past weekend, Mackenzie's godmother katie watched her for us so we could. Scott has been wanting to see Act of Valor so bad but when you are married to a police officer, or at least for me, i get a little tired of all the shoot'em/military movies but i suprised him and actually took him.
Needless to say, yes it was another shoot'em volient movie but it was a true movie. Everyone says that law enforcement lives are hard but I dont think anything compares to military life. I would never be strong enough to live that lifestyle and the women and kids who do are truly truly amazing and strong. It touched on one family of how the husband left for a mission when he found out his wife was pregnant and he never made it home.. I just could never imagine. Our military risk their lives to allow us to walk freely each day and give up so much just to do so.. Thank a solider every day...
On the way to the movies Scott and I talked about how busy our day has been with all that we had going on that day and we both wonder what life would be like with having too.. We both agreed how difficult it would be but we would do it just to have our Alexis back. Scott said something that I am beginning to find as a common feeling amongst all angel parents.  Although all angel parents are different we are stilled joined with the same emotions.

Our common emotions: Once the storm has calmed, everyone around us has moved on with their lives and we are all afraid they have fogotten our angels above...

I've heard this from other angel mommies but to hear it from Scott it was different. When i first heard this though for me, I was kind of ready for people to move on. I hate  the "i'm so sorry" look i get from people.. Yes i'm sorry i'm telling you my story in tears and yes it is sad and i'm heartbroken and there is a void but like i told Scott, people are going to move on, theirs lives are going to go on because, Alexis was OUR child.., not theirs, the saddness and void if for us to bear, not them..  but like i told him also, there will NEVER be a day that doesn't go by that I wont speak her name nor will there ever be a stranger that doesn't know that I have two girls and not just the one they see.  This journey was meant for us to walk it for some reason and our dear dear friends will be there to pick us up or hold our hand when need be but it's still the journey Scott and I was picked for.. I wish we weren't the chosen ones but for some reason we were.. This path hurts like no other but as long as I have Scott by myside and my angels with me, I get up everyday to walk it.

Jax- you touched on post partum in my last post.. I've been asked that but I'm not quite sure. How do you distingush between post partum and grief?

I was finally able to get a massage this past weekend, i have a normal massage lady that i use, and the last time i saw her was when i was pregnant. I finally got the courage up to call her and make a appt. as I have still been unbable to face her. I was proud of myself that i did and it didnt hurt so bad when i finally saw hurt. Yes i still cried and still embraced for a long needed hug from her, but her also, she is an angel mommy. She lost her son when he was 15 in a car accident and she told me, you can't rush grief.  There is no true healing when you lose a child, there is no void like no other.. It's been a few years for her but she still struggles at times.. She told me to just look for the signs to know that our angels are ok and I told her about my signs with Alexis. She has had a few herself...She also told me that it has helped to talk about it some and i told her about my blog. Although i dont like talking/dealing with people in person, my blog still allows me to speak and i have found it very theraputic at times..

But i still wonder if i do suffer from some sort of depression or is it just grief.. Am i rushing the process too much..Regardless of what anyone ever tries to "title" my feelings/emotions, the sadness will always be there.. There's nothing in my mind that will ever take that away..

Pumpkin is still just putt putt'in along.. I really think she will be 11 pounds by next week when we go to the doctors office. Just going for our routine follow up... I found now that messing with her little cheeks she laughs more and she now does this continous giggle.. jsut so stinking cute.. her hair is just growing so much also.. it's like this peach fuzz state where i can't put a hairbow in it quite yet but it just sticks up everywhere.. I love every single piece though..i think the peach fuzz is such the cute phase ever.. i"m still waiting for it to turn black but right now, it's still this brownish blonde color.. such a daddy's girl i swear.. i'm loving more and more how she is truly proving her diva status to others so they understand why i call her a diva.. My sister has watched her a few times and this past time, my sister said she got mad when she took her out of my newphews chair cause she wanted to sit in it and then mackenzie proceeded to pee all over her bed then laughed about it.. and then she goes to uncle clays twice a week and he agreed that when she is uncomfortable or gets frustrated, oh will she let you know.. Diva i'm telling you.. she must get that from her daddy also.. :0)

Friday, March 9, 2012

Yep.. It's official..

Just had to share.. It's official...

WE HAVE A 10LB POUND PUMPKIN. MACKENZIE JUST WEIGHED IN AT


10LBS 5.8OZS

omg. this just totally blows my mind. Give or take a few ounces as she had her diaper on but either way, she is over the 10 lb mark.I'm just in shock and aww.. i mean just 7 months ago she came into this world weighing in at only 1lbs 6 ozs, the coffee cup on my desk weighs more than that to know that she now weighs more than my coffee cup.. i'm just in shock.. I am so proud of my little pumpkin and so thankful for my angel above for taking care of her...

Thursday, March 8, 2012

Acceptance is hard...

To know me before this journey began, I was the person that was always on top of everything. I felt so together and I was always that planner/go to girl. Since our new journey has begun, I have done nothing but feel so lost. I know people have told me that it's still me but just a new me but day to day I just haven't accepted or found that happiness in the new me. I'm always forgetting things now and I'm just not on top of things the way I use to be. Yes I know im a new mom and I have a lot going on with Mackenzie but I just do not like this feeling of being lost. Part of me feels that it adds to my saddness and its why I'm still not able to move forward the way in my mind i want to. All in all I keep telling myself, i really have to stop pushing myself so hard but knowing that and accepting that are two totally different things.
Along the way on my journey I am getting the pleasure to meet more twin angel mommies and all angel mommies i meet have been a true blessing but my twin angel mommies give me that extra little perspective that I need most days. A dear friend that I've known since middle school started a angel mommt ministries where we get together once or twice a month and just talk and have dinner. We talk through fb messages/phones and we have that connection to where regardless if we talk or not, we know we still stand together. Over the course of meeting with them, although we are all angel mommies it still felt different for me as I had a baby to come home to and the fact it was suppose to be two for me. So for a while now I've been contemplating starting a twin angel mommy group and the old me would have jumped to start a group of supporting and amazing women. I started the SWAT wives group and still in attemping of starting a wives association for the county but yet i'm meeting this new road with such hesistation. And for quite sometime i just couldn't put my finger on why it is I just have jumped on the twin angel mommy group the way I just need to and the advice giving to me by my friend who started the angel mommies but today thanks to my sweet angel above it finally hit me. (This is why I go and see Alexis so much because she just gives me so much comfort and the answers that I need-its truly different talking to her at her burial than anywhere else)
I realized my hesitation has been because how can I lend so much support when I dont have it together myself. how can i tell another mom or bring her comfort when I've yet to find my own. All i can tell her is, it's hard, yes i still cry, sometimes a few times a day, yes although i'm overjoyed with my earth angel, it still doesn't make my sadness go away. Yes i still cant look at a lot of pictures. I still avoid people as i'm not ready to face certain people still.. Yes i still second guess and relive everyting in my head and have nothing but what if's..  I dont know when things will become mangable.. There's not a single day that doesn't go by that I dont think or miss my Alexis.. Maybe I just can't accept the reality of it all but maybe i  just to start with the bits and pieces....

Pumpkin has been doing so amazing. We saw Dr. Cheeseman this past monday and he said everything is looking great. He is amazed with how much her eye has come down. he is very pleased with how things look right now. He said right now she does look a little farsighted but thats semi normal. He checked her refractions which I didnt quite understand what that was. But from what he saw, he said overall she looks great. He wants to keep her on the propranol for at least 2 months before we get another MRI to see if the tumor is gone. He said he doesn't want to come off to early with the chance it doesn't completely go away. So she will stay on the med for another couple months, she gets it every 8 hours which she doesn't like. I think she doesn't like the flavor which we got bubblegum grape this time so i guess we need a different flavor next time. She is such a stinker with it because she does so great when daddy or uncle clay gives it to her but when i give it to her which is most of the time, she shakes her head, or she swats at it.. she has now learned that she can blow bubbles with it to where it pushes the med out of her mouth...
She laughs so much more and loves pulling on mommies hair. She is still doing amazing sleeping through the night. They are still requiring her to stay on the apena monitor while she is on the meds which is fine with us as long as the monitor is not going off every 45 mins. We got to try the bumbo this week as well and I'm not sure how she likes quite yet.. I think she likes but she gives me that "umm.. what is this" look.. but i'm excited she sat in it without falling forward.. 

We have learned that she loves Jake and the never land pirate and barney. I know right weird combination but she gets excited about both shows. I dont think she has reached 10 pounds yet but she is really close. We dont go back to Dr. Cope until the 21st so we wont know for sure until then. It's also hard to believe also that tomorrow will be her last RSV shot for this season. We hope it wont be her last with the next season but they say it's hard for insurance to cover after fisrt year of life and the shots run about $1200-1500 a piece.. I think they must put gold or something in the shot.. i mean gezz..
I dont know what we are going to do come next month when i think we only have one doctor appointment on the calendar next month.. Its just crazy knowing that we are getting to be more of a "normal' family with a "newborn" in each passing day..

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..