Thursday, October 27, 2011


I put "understanding" in quotes because I dont know if that's the right word for all of this, but for me is kind of the only word.  To me "understanding" is like a two part meaning..
On one hand, I wish noone would understsand my pain/emotions because to really and truly understand will mean you that you have to endure it and have it happen to you and scott and i never wish such pain on anyone else.  This has been one journey we dont want anyone to ever have to go through.
But then on the other hand, i wish people  could understand where i come from and grasp it all. 
Yeah i know right, how jacked up am I to contradict all that i say. But i guess my biggest thing that has gotten to me this week.. and for those reading this please understand it's not to offend or whatever as this is me and you are you.. And i totally know people mean well and I get that (but if you dont know what to say then that's ok, you dont have to say anything to me when you speak to me, heck you can metion the weather for all i care)  but I really wish people would stop saying to me.. "well my brother sisters cousin aunt had a preemie at so in so weeks and they are now at so and so age and you would never know that they were a preemie and are doing great".. For me it's not about years down the road and the developmental skills and what not. For me its about the right now and the right now is just making sure we get through another day and that our little pumpkin is with us. It does not matter to me what the years brings as long as the years come with her . No one can understand the fear and the pain of haivng to bury one child and a few hours later be with your other child as they are hooked up to monitors and tubes and look so helpless all the while you stand there being and feeling helpless. I stand there and watch mackenzie not knowing what the next hour, heck not even the next minute brings .But i take it for that is another minute or hour that i'm with her and that she is here with me.
 Instead of telling me how great your brothers sisters aunt cousins preemie is doing or has been doing, i would rather heare about how you do it. How do you cope, what was the struggle like, how did you get through each struggle. Having a preemie, and i know a child  let alone, but preemies have extra special care early on in life, is such a journey all in its own outside of parenthood and thats the support that i look for and need. We are on the road to parenthood but our road slightly curves and bends differently compared to full term babies.  Our milesstones come in such smaller comparisons to a full term baby.
And please understsand when you call me and ask me how is mackenzie doing, i really dont want to answer. Because for me there are no good or bad days. There are just stable days. There was always "good" days with Alexis but yet she gotten taken away from us and became our little angel. So we dont take the "good news" for good days we take them as stable.  And some will notice that i will immedatiely change the subject because its still hard for me to talk about and reconigze that you are not asking me about both my babies you are only asking me about one. And I just can't give you a "good" report becaues there is just so much details to how mackenzie is doing and not everyone knows or gets whats' going on. So that's why for me it's just easier to type it versus saying it.  I love talking to the people who can have a normal conversation with me and treat the day for what it is. Its not about acting like nothing has happened, it's just about acting like we can move on and go forth and not stay back in the pain.

The past few days scott and i are trying to wrap our heads around what all needs to be done for mackenzie to come home. That day seems so far away but yet its a lot closer than we think. We got our cpr class and shaken baby syndrome video out of the way. Mackenzie currently weighs in at 4 lbs 5 oz, so she can now check the weight requirements off. We are happy to report that is gets 4 bottles each day (every other feed) and is doing amazing on them. She is finishing the bottles under the 30 min time frame. We need to get to 8 to check that off the list. She hopefully gets to try the crib today. When i left this morning they were starting to wing her from her bubble (decreasing the heat temp) to get her ready for crib and room temp. She has to maintain body heat int he crib without losing a lot of weight so that we can check this off our list. She has gotten to come off all her meds accept her prevacid (reflux) and her iron which i doubt she will come off of for a while but that's ok because mommy is anemica also. She is up to the 36ccs of feed. She is still ont he nasal cannula but still on just a little bit of room air. Still no change/word yet on eye exam as i think she has another check up today (i thought it was yesterday but they didnt come so we are hoping today).

Scott and I have got to find the time to get the house ready and prepped for her to come home because it will be here before we know it.. It's really hard to believe that Sunday our girls will be 3 months old.

Monday, October 24, 2011

Oh the rollercoaster..

I really and truly feel that the NICU should also add "rollercoaster" to the name as well.  If only the locked doors and long hallways lit up with bright colors, had straps to keep you restrained, gives you the rush and thrill ride all while ending in what 5 minutes.
I never in a million years thought I would have a "happy" moment in our stay in the NICU right now nor did i ever think i would cry tears of "happiness", heck i never ever thought i could cry as much as i have over the past almost 3 months.
Our little pumpkin gave me the best thursday and it was very much needed. I got to give her two bottles, one which was done all by myself, and she took both of them in the 30 min time frame and I didnt feel nervous or anything. For her 6pm bottle, after wards i got to semi swaddle her and I just sat there for two hours just holding her and rocking her to sleep. It was just me and her. Her monitors didnt go off, my phone didnt ring, the nurses didnt need to check her for anything, it was just purely me and her and i just sat there rocking her as she just slept on me and all i could was stare. I couldn't believe this is what scott and i created and how she is so beyond a miracle. As happy as I was, i also couldnt' help but feel sad because my sweet angel alexis wasn't in my arms as well but as i looked up (the girls "nametags" that got made for their "bubbles"- we still keep alexis's in mackenzie's room, its just in the closet to which i never keep shut) but her name tag just was beaming when i looked up and that was the first thing i saw. I knew she was there in spirit and she was giving me that moment. That was also the same night that Mackenzie hit 4lbs and also the extra cherry on top, we had Katiebeth which was one of the nurses who was last with Alexis. Daddy couldn't be there but we got it on video for him and it was just a relief that i could finally have a moment and just be happy.
Friday came, Scott and I had to do our cpr class and watch the shaken baby syndrome. Mackenzie got her feeds upped to 36ccs. The day went by smooth and quick and it was just all around a good day for us.

Well then of course you know that had to be short lived for me. Saturday morning came around and we did our normal morning call, hoping to hear the news that she might have gotten to go to the crib that day, but nope, we get the, Mackenzie isn't being herself today. She is being really puny, and we are going to draw some blood and run some lab work. I tried not to read to much into yet so ran some errands but still needless to say I got to the hospital asap. Lab work came back normal but yet our little pumpkin didnt want her paci, she didnt cry, she was hot, she just layed there. I held her and normally she wiggles on me till she gets comfortable, but she just laid there where she got placed on me and didnt move or anything. It just wasn't my pumpkin. The doctors ordered more blood work as they said it could still be a little early for first round of blood to show any infection so they did it that night. The first time i heard her cry all day is when they had to poke a few times because they had to get a lot of blood from her and it was such a pityful cry that i had to go and sit in another room because i couldn't stop crying. there was nothing i could do for my baby and none of us knew what was going on. Resulst came back from second lab work semi normal, nothing that stood out but she was just so puny, so we left at 1am to get some rest and wait till morning for another set of labs. I just sat and cried all saturday. I was scared because she was just so puny and none of her labs were coming back with an explanation. I couldnt' really hold her because i didnt want to stress her out anymore just for my selfishness. I just couldn't help but sit there and think, we can't lose her either, we just can't, I need her with me and for her to come home.

sunday came and as always, when she has Tonya on the weekends, Tonya always tries to  sends us a good morning picture of mackenzie and told us that she was feeling al ittle better (and plus she knew how upset i was from the day before) so needless to say i was waken to a little sigh of relief.  Not 100% yet but she was on the way. We went to church which i did good (only because Scott was with me) I actually spoke to a new lady and didnt even cry. I even sat with Alexis afterwards like we always do and didnt cry. I showed her the morning picture of Mackenzie and just kept asking her to get her better and get her home.  When i got to the hospital, little pumpkin was resting. She seemed in much better spirts, so I actually left for a little bit and took my nephew to the fair. Boy is the fair a difference experience when you go with a 2 1/2 year old. But nothing compared to when i got back to hospital and Scott was there as he didnt go to fair with us and him and mackenzie ended up both passing out at the same time. If only I could lay them close together, they were both sleeping the same. She is so her daddy's mini me and i could had just stared at them all afternoon just watching them both sleep. It was a priceless moment.

Sunday night weigh in came in and we are happy to say that Mackenzie is now weighing in at 4lbs 4ozs. She is now 16 3/8 inches in lenght, and her head cir. went up another 1 cm i believe it is at 30 now.  she rested for the rest of the night so Scott and I left a little early as there is nothing to eat around the hospital in the evening time and it was nice to eat early, get home and I was actually able to get my kitchen back in order and get it semi clean. I almost feel some sort of normalacy. (i dont want to actually say it though because it seems like it will be too good to be true)

I even woke up this morning actually feeling refreshed. Got to the hospital around my normal time and was excited to find out that Mackenzie took a bottle at 9 pm. in 14 mins and she has been acting all night like she has been wanting more. It was good seeing her cry and being diva because i wouldn't stand there and hold her paci for her the whole time. I think she was hungry again but she just ate so there was nothing i could do for her. My little oinker. Before i left to come to work i was told that her new "orders" stated she can get a bottle every other feed so that's 4 bottles a day. Super excited that to report that she just took her 9am feeding and she did it in 10mins. RN Shelly said that she would have probably finished it quicker but she had to slow her down some because she was going to fast on it. :0)

Hoping for crib soon but we dont want to do to much at one time so we will see. As always, its the watiting game.

Wednesday, October 19, 2011

Oh the things that amaze me...

First and foremost my little pumpkin amazes me every second i'm with her.. She is Spoiled sooo with a Captial S.. But like Dr. Yajick says though "if your child has to be in the NICU, then they deserve to be spoiled." Oh how right she is. Mackenzie has now decided that she does not like to hold her own paci. She likes for mommy to hold it for her in her mouth regardless if mommy is holding her or not.. I hve to rig certain ways for her paci to stay in her mouth as she has learned that mommy will get up everytime she spits it out and if mommy doesn't get up in time, then she decides she wants to cry.. but yet anyone else, she decides to be nice to them.. spoiled i say..
She is currently weighing in at 3 lbs 14 ozs.. She is looking a little puffy again so hopefully that's not all fluid again but i see 4 pounds here real soon and i think if we can make it over 4 lbs and they still release some of her fluids then she will still be at at least 4lbs.. So maybe we get to try the "crib" real soon. Her eye exame still showed the same results.. we are still at a stand still. But it hasn't gotten worse so that's a good thing. So we are still down to weekly exams. They have upped her feeds to 34ccs and she also gets to try 2 bottles a day now. 2 down, only 6 more to attempt. (remember 8 bottles a day is just another step closer to going home)

My husband amazes me as he takes majority the grunt of all my ups and downs. And i know everyone is going to say "well yeah he should because he is my husband".. but he takes it with such patiences. Well like 98.9% of the time. I know it has to just be as hard on him as well as he is riding this ride with me as well so i try not to put a lot on him as we both need each other in all of this ya know and it's not fair to him to take the load for everything.  I just think the tempoary me he is still trying to adjust to compare to the "old me".
Our friends and community amazes me by how much support and love they have shown to us over the past 3 months.. It has been quite humbling,overwhelming and comforting all at the same time. I've always known that we have been loved by so many but I never imagined the magnatitude of love/support that we have gotten.

My body has amazes me as one of my friends put it "i'm on auto pilot". Although i know i can admit to how tired i am and the fact i'm not eating the way i should be, i have yet to hit a brick wall. knock on wood. But im working on it. I have actually came home early the past two nights from the hospital and I actually had my first night home alone as scott started back on night shift. So far i did good but i think i was just to the point i was past exhausted, i just pumped and went to sleep. Hopefully I wont have to be home and have a lot of time just to myself. I dont know if i'm ready for that yet but next week will be a trial as it's scotts long week.

And through all of these postive things that amaze me, i would have never thought such petty drama would amaze me. Long story short, nurse manger had to come talk to scott and i and pretty much in a nutshell, some nurses are feeling inadquated/uncomfortable because I compare how nurses do things. I mean really. We have total between night and day shift about 15 nurses that Mackenzie goes through so that is 15 different ways of people doing things and showing me different way so when everyone does something different I can't help but compared as all of this is such a learning experience for me as well. I know my child because i spend so much time with her so I can't help but know how she is going to react to certain nurses one way and certain nurses another way so its still a little hard to say that she is going to do one specific thing every single time for every single nurse.  So it's like if you dont like the answer then you shouldn't ask right?  But whatever. And even the sadder part, this isn't the first time as we have had such  petty issue not even  a month ago.. Only a few more weeks i'm just going to keep telling myself..

I'm hoping my "relevations" over the past day sticks with me as yall know from my last post I wasnt' doing to well. My dear sweet Donna A, posted something on my fb wall and its has stuck to me today.. "you never know how strong you are until strong is the only choice that you have."

Monday, October 17, 2011

Beyond ready to get off the rollercoaster ride..

Sorry it's been a while since I've last updated, I didnt have too good of a week last week. I know i'm tired/exhausted, i dont have enough hours in the day to do things and be with my little pumpkin but i keep telling myself that this is what i have to keep doing until she comes homes.
I try so hard to keep it together and for the most part I do, but here lately I just can't. But i just gotta keep trying.
Yesterday marked 2 months since Alexis passed and I woke up all ready to go and see her and thought that yes, i can do this alone today. (scott was working) I got all ready to go to church all by myself and i was feeling pretty confident and strong that I could do it. I got to the sidewalk before someone approached me and I just couldn't stop crying from that point. I made it into the church, sitting in the back by myself, hoping to get through chruch service but I just couldn't. I sat there and cried thinking that at that month 2 months ago is when i got the word that surgery was not successful. I couldn't help reliving that day in my head as i sat in the same church that i had to lay her to rest in. So needless to say I got up to leave about 10 mins into service. I went and sat with Alexis for a while. I weeped and finally stopped for a breif to read her a book. Which made me cry even more. I was suppose to be reading a book to her in my arms or as they layed in their beds but instead I have to read it to her headstone. I think it adds to me as well knowing that I still had to go the hospital and yeah even though i was excited to spend time with my pumpkin, its so hard to walk to the same area/doors where i was last with my precious angel alive. Maybe things will get managable not really easy but managable for me when Mackenzie comes home so that I dont have to keep reliving the day as much. I will never forget the day but I always feel like something else is just going to go wrong on the 16th.
Scott thinks that i'm going into seclusion because i'm not doing anything else besides hosptial, work and sometimes home. But i keep telling him, it's not like i'm not answering my phone or i'm not allowing people to come visit me at the hospital. Its hard for me to get out and do anything. Its hard because almost 12 weeks ago now, i gave birth to two beautiful girls and yet they are not home with me. Its like I have two babies but yet you dont see me pushing a stroller around or taking them to church or anything like that. I dont get up in the middle of the night to pick them up if they are crying, or rock them to sleep. I haven't gotten to enjoy motherhood the way i should be right now. I've been trying so hard the past week to get out and get back into the real world but I just can't. And then knowing i can't makes me feel even worse because i'm letting so many people down. I wasn't there for our benefit where so many people came out and gave us so much love, i missed my dear sweet friend nicoles birthday party, i missed our friends Marlana and Chad's wedding,  Rylan's 3rd birthday party at monkey joes which is a place i've been wanting to go to for like forever. Missing these things makes me feel horrible because I have always been that person being there and juggling so many things in life and now I'm not myself. I may never be 100% me but i would like to get back at least 50% me.  My best friend, holli, told me last night that i'm always doing for other people, its time i let others do for me and that's just so easier said than done.. I just dont even know where to begin. I'm beyond emotionally drained but I can't show Mackenzie that.. She needs her mommy to be there and to be strong because that's what she's gotta do right there with me.
On top of me falling apart, I'm a little sad to know that I dont think we will make it home by halloween. I was very hopefully at the beginning of the month but now two weeks away I just dont see it. Mackenzie acutally lost some weight towards the end of last week because she was retaining to much "water weight" (she wasn't peeing out enough)  so they had to give her some lasik and she pee'ed out so much the next morning. She ended up losing 3 oz's so we went back to 3lbs 9 oz. Last night she weighed in at 3lbs 12 oz so she is slowly gaining it back. She grew another inch in lenght. She is now a little over 16 in. She is slowly working on the bottle still. She didnt get it much last week and still trying to figure out why but hopefully with the new set in stone order we will get a little more progress and she will just continue to grow.. She is still at 32cc's which i can't wait till they up her some more on it because boy let me tell you.. she is feisty when she is not fed on time..She is so her daddys' child..She amazes me each day as she jsut becomes more and more of her own little person and man ol man is she loving her paci even more and more. She is spoiled rotten as she always wants you to hold it for her but then if you dont, she finds way of keeping it in her mouth without holding on to it. She sucks it so hard right now and it's still al ittle to big for her it always comes out, but she is working on getting a better grip of it.
I'm hoping soon we can get off the big rollercoaster and get more onto the kiddie ride until then i just gotta keep going..

Wednesday, October 12, 2011

Pumpkin update

Well not too to much to report yet. Mackenzie is still weighing in at 3lbs 11 ozs (she lost 10 grams though but hopefully she can bring back up). They increased her feeds to 32 ccs now. She is still in the bubble which i think they are going to keep her in until she reaches 4 lbs but that's ok becuase i think she likes the fact of being all spread out compared to being a little burrito (being swaddled).
She had some lab work the past two days and her blood culture is growing something but they are not quite sure if its' an infection or not. Her blood level to test for infection is low still right now and they say she is not showing any signs of anything so they say the longer we go without hearing anything with the culture the better so, so far  nothing.
Her eye exame was today again. They still want to check her once a week. She is still in stage 2 zone 2 but Dr.Clark said that it looks like more retinia is growing which is what we want as it pushes out the bad stuff. He said that if it keeps doing that, it looks like she wont be neededing treatment so needless to say, they will be back on monday to check.
But overall they say she is doing really good.. We just gotta keep waiting for her to grow..

Team Barber

Someone recently told me that it "takes a tribe to raise a child".. Boy o boy what tribe Mackenzie has. Since our journey has begun we have had nothing but the utmost support/love from so many near and far, people we know to people we have never met. Our closest friends and our work family has come together in such a powerful way all for our little girls that we are left speechless and comforted by it all.
This past sunday, Oct. 9, dear friends/Sheriff's Dept/SWAT team, all came together and hosted us a Benefit fundraiser at Lexington high school. They sold Hudson's BBQ, raffles, dunk booth, bouncy house courtsey of Jumpree,  bake sale,face painting push up-thon and live entertainment from various groups.
We can not thank everyone enough who came out and worked, donated, spent their time to help us through our difficult time. I GREATLY AND WHOLE HEARTLY APOLOGIZE.. for not being there as I was not able to still face a lot of people. Scott attended for a short time and he just told me it was amazing.
Last night the "organizers" of the group minus 1, Erin Derrick,  Holli Adams, Sallie Buice,  and Jesse Lantiz (absent but in spirit) presented a "check" (and i put this in quotation because it was a fake one as the bank account they set up for the girls will remain open for quite some time). Because of our "tribe" that has come together, they managed to raise over $14,000, minus the expense for food, our "profit" was approx. $11,000.Yeah Scott and I are still trying to pick up our jaws from the floor.
We truly can not thank everyone enough that has sent us monetary donations directly or through other cause like the yoga benefit that Doug Graul put on at his chuch, or all the people at Trinty UMC that gave us a "love offering".. It has been quite overwhelming and we can truly feel our lives being wrapped up in everyone arms and know we are not alone through all our pain and joy. 
Extra thank you for those who worked the benefit:
erin and chris derrick, holli and rich adams, tim and sallie buice, katie and jayson harrison, karen- jordan and chasity rieger, jason and nicole sword, virasith simmalavong, seng thanabousy, james watkins, amanda phillips, timmy and kirsty fraiser, brandon baughman, lilly knight, ashley russell, brittany-dave and chantel griffin, lauren rickman, paulette, lynne stroy, lynette radford, tonya wells, hannah carr, regina norhcutt, tina bullis, nicole rusiyak, joy jacobs angela church, and the LCSD SWAT team.

Thank you to the vendors/people who donated for the raffle:
jeni rone and se star arts boutique photograpy in charleston, scott moore- artist/illustrator, lorie mcgraw-handmade art cards, jen gurley-artist, alicia white-photographer, cas wrinkles-smock dress, cotton grill restaurant, alodias cucina restaurant, catch 22 restaurant, kingsman's resturant, flight deck, creative nails, aquaris spa, nicole blackwell-avon basket, vanities salon and spa, rejuvenantions, hair and nail salon, rebecca glendinning-pure recovery shake, maegan edge-premier jewelry, emilie thompson-custom tutus, paracord, southern charmed boutique, christie tull-custom tutus, brandon lindsey-picture of usc baseball print, spring valley country club, lexington guns and shooting range, wingard's nursery and garden center, woodlesy garden center, super sod, the karate dojo, whomeever donated the johnny rocket kevlar boots (anoymous), ed edge-guitar lessons,  lads and lassie, fox farms, tara webb-tastefuly simple,whit-ash, fraiser tire service, jumpree, mr.shorty tattoo, birddog apparel, Mrs. Claus, Post No Bills, Hampton Inn and Rivers wind landing..

To the people who entertained:
Sortova Tragety, Stephen Mathis-karaoke, Capital City Cloggers, The Karate Dojo, The LCSD SWAT team, Jason Dalton

And again a huge thank you to everyone else who i may not have put on this list as i'm just going off the list from the organizers.. again to all the people who gave whether it was monetary, their time, the baked goods etc.. Our family is truly blessed to have such a tribe and I can't wait to watch Mackenzie grow up with this tribe.

The t-shirts that got made for the event and that were sold there, these are the girls actual foot prints (the front also has prints plus benefit logo and date)

Dad with some of his SWAT brothers

LCSD SWAT team doing their push-up thon

SWAT Operator going into the dunking booth

Bouncy houses

So many backed good items

Face painting

Assembly line for food...


Monday, October 10, 2011

Well Pumpkin tried.. till another day..

The easiest way to get to the NICU at baptist, you have to  come off the elevator which is right in front of one of the nursery. So needless to say everday I come and go, I always have to walk by people who are so overjoyed with the newborn, and they all have cameras, ballons, etc.. The new baby sits in what they call a "crib" and is all out for display with joyous people. Then i come to the NICU doors to which you have to get buzzed in, once in, you have to scrub in then here lately, it's been quite hallways. You walk by private rooms that are majority of the time are dark so that the baby does not have a lot of stimulation and to mimick the womb. The parents and vistors in each room dont have cameras, ballons. The baby is not out for display,There are only allowed 4 vistors per room..Its a totally differerent atomsphere mainly with the quite sounds of the unknown.
So when pumpkin got to make it to a "crib" this weekend, I was so overjoyed but i had to keep it contained to our room. Scott and I were over the moon. We actually got to put clothes on her for the first time. Needless to say they dont fit but that's the best we can do for now. We hit up two walmarts to get her enough outfits as I didnt have the right ones. (They can have onesies, but they also need socks and pants, or they have the outfits that have legs to which i had none but one outfit like that, and it even wasn't washed yet) I havne't had a chance to wash all her stuff yet as most she can't wear and we still dont know when she is coming home. So needless to say, I couldn't believe i was washing clothes for her.
We were so shocked to see they were even considering her for a crib but apparently she kept getting hot in the bubble and she was already on room air so they figured it was maybe  time to give it a try. And we ar epretty sure the fact that is is spoiled has nothing to do with her getting her way either. :0) She was not happy saturday unless you held her... I wonder where she got spoiled from.. mmm. :0)

My nightly hold next to her new bed..

Mommy time..

But awesome as it was, Pumpkin had to go back in the bubble today. They said this morning she wasn't maintaining her body temp and she has been a little wimpy since last night so they put her in for precaution sake. She had to get more blood today so it made me sad as i knwo that means a iv which she has been doing so good without having either. They said she is just burning to many calories probably with trying to keep the heat so it just wore her out.. But we are so proud that she gave it a try for 1 1/2 days. We can only keep trying.
She is now up to 3lbs 8 ozs but we will see if she lost tonight since her body has been working so hard it has burned off so many more calories. Plus the new scale is quite different from her bubble scale so we will just have to wait and see tonight.
They have upped her feeds again to 30ccs so that's always exciting. She is still having reflux but in time with they will pass hopefully. Her gall bladder ultra sound came back and said it was "unremarkable" so in other words, means there is nothing of any suspious anymore.
Her eye exam went well i guess you could say. Dr. Clark is saying now that the ROP area is looking a less inactive so it just has to run it's course now.  but instead of 2 a week exams, he felt confident that she would only need one right now. So we wait for wednesday. 
But our little pumpkin keeps trying new things each day and although she succeeds a little bit and has to go back to plan a, all that matters is that is trying and is just getting prepared to come out of it all...

A Lasting Tribute..

Since Alexis passed, I get neverous everytime i hear my phone ring, but thursday I finally got the call, well the only call i've been waiting on. I finally got the call that Alexis's headstone has been completed and installed. They told us it would take 6-12 weeks but they got it done in about 5 weeks I believe.
I can't thank Memorial Designs in Lexington enough for their grace in handling all of this with us. Picking out her headstone was just as hard as anything else we had to do with laying our little angel to rest. But Salley and her husband was able to help us make the hard decision and got us through the whole process with such ease.  They were able to sit there and put all the ideas we had on the computer and draw it as we described and made changes where need be.   I did ok until I got to see the final design on the computer.
Her beautiful headstone is the last physical thing we can add to her beauty and we are so happy to have it finally installed. We hope that we did Alexis proud and that she finds it as lovely as we do of her and it.  We love and miss you dearly baby girl but you will forever be in our hearts and you will be forever our angel.

Thursday, October 6, 2011

It's always something...

I blog in such a funk this morning and i'm not even quite sure where it came from. It could be just being tired and the combination of seeing pumpkin unhappy this morning and not being able to really fix it.  She is in for a day of poking and prying and it just breaks my heart to know she is going to have to go through that and I wont be there.. She gets another eye exam today so hopefully we will know the results of that this afternoon. She also has to get another ultrasound again today. Now they are concerned about her gall bladder. They said the ultra sound from the other day to check her liver looked good but her gall bladder looked a little enlarged. Dr. Coates called a GI doctor and that doc said since they did the ultra sound right close to one of her feeds, it could have just been the food. So now she gets to skip one feeding depending on when the ultrasound tech people come in and lord knows when that is. If it still looks like a issue then she is going to have to run through a series of blood work/testing and hopefully it wont turn into anything disease/infected like.
As of last night, she weighed in finally at 3 lbs 5 ozs.. She is right at 1500 grams. I am excited to report though also that the day before yesterday when i got to kangaroo her, she started "rooting" (that is pretty much where she is sucking on my chest thinking it's where the supply comes from. ) So the nurse told me to just go ahead and try to breastfeed and see happens, and pumpkin just latched on. I couldn't believe it. It was the craziest and awesomest thing. She hung on and just fell asleep for a while. I wasn't able to give much as i just pumped before i got there as that's my normal time so we got to try again yesterday and she didnt take so well. But that's ok because it's going to take some use to getting to on both ends so as of right now,I'm going to get to try everyday at her 6' o clock feeding.  She is still doing so so on the bottle as well. Right now she can have 2 a day but since we are going to try the ninnies, she can only get one bottle a day. They have increased her feeds to 28 ccs.
This morning when i was with her she was just so unhappy.  She had such whimper cries and she just couldn't get suitated. So i took her out and just rocked her for a while and that seemed to help for a little bit but she was still restless. When i put her backin her bubble and RN Faye got her better suitated it was the crazinest thing, but i just looked at her and I saw Alexis in her face. They weren't suppose to be identical twins since they were in two seperate sacs but it was just the craziest thing. I hope its a sign letting me know that Alexis is still keeping watch over her and not the oppposite.

Tuesday, October 4, 2011


Everyone always has said that all you need is love to bring your baby home and all that other stuff can wait. I really wish that was the case in our suitation. Love couldn't stop our little Alexis from being an angel and love hasn't gotten our little pumpkin out of the NICU yet. But I will say that love has been what has kept Scott and I going. The love we have for each other, the love for our girls , the love for the team of people who cared for Alexis and who still continue to care for Mackenzie and for all the people who have been our support through all of this.
Mackenzie still weighs in at 3 lbs 4 ozs. She only gained 10 grams last night but that's ok. She got another shot at the bottle thismorning and she didnt seem to into it but took a few cc's down. Her eye exam yesterday, I guess you can say it went well. Dr. Clark said that the ROP didnt get worse and things look the same but in the same breathe that it looks a little bit better. He is now hopeful that she might actually regress so she has another exam on thursday. She will have 2 exams a week until her eyes decided what direction they want to go in.. I hate she has to go through that but I know it's for the best. She now also had another ultrasound today to now check her liver as her blood count for whatever they test on the liver was a little down so they want to make sure that it's not enlarged or that there isn't a issue now with her liver.
As days go by and as Mackenzie continues to progress and jump her hurdles, it's beginning to hit Scott and I that she is one day closer to coming home real soon. We have yerned for that since they were born and now that it's becoming more of a reality and not just something still in the long distance, boy ole boy am I scared. It just hit me last night. I realized for the past 9 weeks and 3 days, my life has been the NICU. The only times i have really been able to see friends is when they would visit at the hospital and then just at Alexis's funeral but I do know i have neglected so many and I apologize for that but my world changed completely when I got wheeled through the doors at Baptist. I've made the NICU my life because that is what feels normal to me, that is what I have known for and with my girls for the past 9 weeks. The NICU is the last place where BOTH of my girls were with me.  I know the monitors, the beeps, the dings, the supplies, the meds, the diaper changes through all Mackenzie's wires.  I know how to only give her a bath with little wash clothes that i get to use to rub her down in her bubble.  When she comes home, we have her crib, carseat, stroller. pack n play and highchair (it was a package deal that we couldn't pass considering we really need the car seat and stroller) Thats all that she truly needs for now, yeah we have a lot of knick kancks and clothes that people have given us but even majority of that, she can't use yet or wear...What am I to do with all we have.. . Her car seat and stroller still sit in the box. I dont know how to use any of that with her.. I just got use to feeling totally comfortable well 98.5% comfortable taking her in and out of her bubble without any help. Again the fear of it all has kept us from really buying everything/registering again. (For those who have looked, our registry got wiped out so that I didnt have to look at everything that we wanted for BOTH of our girls) I dont know if if i'm going to register again although certain people and you know who you are really want me too, but you guys can be proud, i did go and look on babies r us website so you know that was a big step.  (gotta research the angel monitor now)
 Hopefully we only have a month to go and I dont even know where to begin to prepare for her to come home. I got tunnel vision on what needs to be done for her to "graduate" the NICU but I haven't even really put thought into what she needs when she comes home. So in order for Mackenzie to "graduate" the NICU and come home these are our goals:
1) reach at least 4.5 lbs.
2)she has to be able to take 8 bottles in one day and all under 30 mins. (she gets fed every 3 hours)
3)she has to be able to maintain her body temperature
4)she has to be able to sit in a car seat for over a hour without any heartrate drops or oxygen drops
5)scott and i have to take a cpr class and watch a sids video

Yeah it's a short list and it sounds a lot easier, but if only they were as easy as it sounds. (well number 5 is not a problem, just hope we can get into a class before the month is out as they only offer at certain times) So hopefully as the days keep passing, we will be able to check part if not all of our goals off so we can create some "home" goals and not NICU goals..

Monday, October 3, 2011

Weekend roundup with the First of many..

Sorry fellow blogging friends, I know i went the whole weekend without any updates but i didnt get the chance to be much around the computer but boy ole boy will i make up with for it with my weekend round up. This weekend was the first for quite a few things and I'm excited to share. The only thing I wasn't excited about, it was my first weekend without my husband as it was his first weekend back to work in almost 9 weeks. That was a little hard but I survived..  A little scary but i did it.. So here we go..

Friday: Our little pumpkin had another eye exam. Dr. Clark is now saying that she might actually be regressing a little bit with the ROP. He said when he looked at her eyes he sees more retina developing which is a good thing but then that means if more develops and she still ends up at Stage 3, then our only option would be to do the laser surgery. So she gets another eye exam soemtime today and hopefully the ROP is still regressing. It's kind of crazy to all of us because last monday Dr. Clark was pretty confident that she was devolping to stage 3 pretty quickly and it was only a matter of time before we had to do treatment on her but now he is saying that we are just going to let her be for now and keep following up with her so that is semi good news...She got to come off the nasal cannula on thursday but because of her eye exam and her jsut being worn out from that, she had to go back on it friday but she is on the lowest dose possible of what she can be on without being completely off of oxygen.  The kidney xray came back and it checked out that all is normal so that was a sigh of relief. And i know, i know what's the weight.. but i'm saving that for last.. :0)

Saturday: Pumpkin had to get her first series of shots. (vaccinces) The only good thing about these was that since she is in the NICU care they dont have to give them to her all at once, so she only got one this day and then the other 2 the next day. But goodness gracious.. That was so hard looking at the needle and Scott wasn't there so needless to say it broke my heart , but I didnt ball like i thought i would but i guess it's because i didnt have to hold her down or watch.. But moreso than anything, we have such a BIG GIRL, and she is such our little fighter, how about she did NOT even cry out. She let out just a little sound at first but then after that she just rolled over and went right to sleep. That helped a lot that our little pumpkin didnt even cry.. They were able to get her some tylenol so that also helped ease all. But she also loved the fact, and this just go to show how much these nurses love their babies, her nurse was Tonya over the weekend and she just loves her Tonya, but you could see how much it broke tonya's heart to stick her and Tonya was even brought to tears because of her first round of shots.  But she loved that tonya loved her some after wards and that always makes her feel better.
But HUGE news break.. Saturday was also the first day our little Mackenzie took a bottle. OMG.. I got to be there for the very first time. (i'm not able to give to her yet because they have to make sure she does ok taking it and that she doesn't have any heart rate drops or anything while doing so.. ) Well i'm so happy to report that our little pumpkin took to the bottle with no heart rate drops or oxygen drops. She only got 11 cc's down in 16 mins (she was at that time on 26 cc's a feeding) so that was not bad at all. That wasn't the whole bottle but it's ok for her first time. We were just super excited that she didnt have any drops of any kind and she actually took to it. It was so exciting to watch.  She started getting a little fussy by nightfall because her shot was getting to her so I got to hold her for a bit and  they had to give her some more tylenol and she was at peace the rest of the night.

Sunday following in to Monday mornings report: Round two of shots. I love Tonya because she actually did it pretty early in the morning before I could get there which was fine becase she had to get 2 of them this time and I just dont think I could handle two.. But needless to say, Tonya said she did so great with no cries again or anything. I didnt get to make it to church since Scott was working and I really didnt feel confident in myself to go to church all by myself. But I still went and sat with Alexis for a bit during some of the church service. That's how i always feel anyways when i'm there sitting inthe pew, that she is sitting next to me for sermon so i figured I know i can go and sit with her by myself so I did during sermon hour. I love her presence she gives me and I truly hope she doesn't leave me. I know at some point she is going to have to because I think she is going to make us do in on our own but I truly hope she doesn't.
Mackenzie had more of a fussy day i guess with both shots bothering her. I didnt get to hold her as much as she just wasn't happy and just wanted to stay wrapped up in her little bed.  She got to come on and off the nasal cannula all weekend. They still left them in her nose but they just turned them off for a good bit of the weekend. She mainly needed it at night when she was feeding, but she is working her way on coming off of it.
As always, you guys know Sunday means measurement day. She did not gain anything in length which is suprsing but it's ok because she can't be taller than mommy till like shes in her 30's. :0) but she did gain some with her head size as she is now 11 cm in head size.
Drumrooolll:She weighed in at 3lbs 4 oz's last night.. wahoo.. she is back on track for her 1 oz a day track. So if she stays like that, can you guys beleive that she wiill be 4 pounds in say about 2 weeks.. We are just jumping for joy with excitment.
We talked to Dr. Coates yesterday as well and he says that she is doing really good.. He said as of right now, ther eare no more test scheduled for her, just her normal bloodwork each week but that she is doing really good. He upped her feeds to 27 cc's for 30 mins every 3 hours.  We also finally heard offical word on Alexis's autopsy. The doctors thought there could have been a blood clot that contributed to how Alexis got NEC so quickly but it came back that there was no clot so now we are just back to the unknown of how the NEC formed so quickly. We may never know but needless to say, we can't stop being scared because come to find out, although Mackenzie is progressing so well there is still a chance she can get NEC. We thought as time goes by that she was out of the running for it but apparently she is not due to her prematurity. So we gotta get praying and just keep taking each day for what it is until the next day. He did say that her chances are slimmer but there is still a chance. NEC is unexplainable all around. There is no 100% preventable way nor is there a 100% treatable way.. We just have to keep montioring and just put it all in God's hands and hope he doesn't take another angel away from us.

But to end on a good note and not on a sad one.. When I went in this morning, Nurse Cheryl told me such exciting and wonderful news. Apparently Mackenzie is going to take after her daddy when it comes to feeding. She said that Mackenzie was just a screaming close to her 12'o clock feeding (she has been showing signs of fussiness more when it's feeding time) but since she was awake and active Cheryl decided to give her a bottle. How about our little pumpkin took the WHOLE bottle in 16 mins. That's 27 ccs in 16 mins.. She said that she had one little heartrate drop at first but after her first 2 swallows she figured out what it was and went to town. She also said that she burped her 3 times and in her first burp it was so big that she startled herself. Cheryl said that she just stayed awake and looked up while taking the bottle. Oh how i wish i was there but what can you do.. we just can't believe she took the whole thing.. She has another eye exam today and hopefully if she is not to worn out from that we might get to try another bottle today, if not then there is tomorrow.