Monday, January 30, 2012


It is so crazy to believe that today our angels turn 6 months old. We have crossed so many milestones good and bad in just our short 6 months that some dont imagine to cross in a lifetime.  Today marks a big day, almost as big as their one year birthday.  We hoped and yerned for this day as soon as our girls were born and now it is here. I look forward to getting off work today, meeting up with Scott and going and getting cupcakes for our little girls, and sitting with them both and blowing out the candle and enjoying that we made it 6 months in so many ways. Although Alexis can not be here physically to blow out candles with us, i know she will be with us in spirit looking down at us.
In 6 months I've personally been through a lot of emotions. I've looked for so many answers. One angel mom that i have spoken to mentioned that she hasn't ever asked "why me". I feel like I've asked why me every week. I look to others to make sense of it all and to understand. I listen to other angels mom and have watched them tell their stories without shedding a single tear and wonder why i'm not able to do that yet. I've known over the past few months as i type my blogs its with great saddness and negativity and I dont mean to make others sad by my post, but understand that I blog to get it out and to put it in words to hopefully see if a answer comes out of it and yet it hasn't. I know my saddness and pain will never go away but i want to stop forcing myself to be so strong with things when I know i'm not. I want to stop comparing myself to other angel moms and how they cope and push to be like that as i know my journey is way different.
It's taken me 6 months to finally figure out why I can't get pass all these things and it's because Scott finally gave me clarity after we have had so many dicussions of my sadness.
Saturday night we finally got to have movie night and we watched the movie Courageous. If you have not seen this movie it is a must. Suprisinly enough I did not cry but it hit home very much to Scott as well as myself. I didnt grow up in a relgious house or anything but I always still believed that there was a God and I always talked to him when i need to, but in time I'm sure I will learn what it means to "give myself to god". I asked Scott to explain to me as he grew up going to church every sunday and he did the whole sunday school thing and all that. I asked Scott is that maybe why i am being punished is because i haven't "given myself to God"?. Is this why i can't stop crying and is this why I can't be strong like other angel mommies without crying so much.  Scott goes, "for you baby it is different, because everytime you look at Mackenzie, you have to relive it all. You always see that its suppose to be 2."
That became my clarity that its ok for me to keep crying and that my saddness will come and go and it's not something that i can just make go away by someone else's action or by their words or by how they react. Its ok for me to sit on their floor and look at one crib and ball because there was suppose to be two and now in the spot where the other crib should have been,there is a dresser.  I dont have another child to distract me nor am i without child. I have a child  I have a child and I have life and I had 25 weeks to prepare me for 2 girls and life with 2 girls and in just 17 days that gotten taken away from me. My mind set has been a family of 4and we will always be a family of 4 just in a different way. One day my emotions will get in check but I know for this day that it's ok that they are not. Honey- as I know you read this, know that I couldn't do this without you and I never thought i could ever love you more than we first meet but yet i do. We are strong together and we have become stronger through all this. Thank you for holding my hand tight as we walk this journey together. I love you.

just a quick update. In short after weeks of talking to doctors here, they are now telling us if they can't find a doctor to adminster the propranol then they can't treat her. Really?? after weeks of telling us this and that, they are just now saying there is a good chance they can't treat her. So now i'm back talking to MUSC doctor which kind of confused me so as of right now, I"m waiting for cardiologist to call me as it seems like he is really the man with the answers.
Yesterday we traveled to Aniger, NC to see Scotts mom and for Mackenzie to meet her for the very first time. It was her 70th birthday and we got to be her surprise. It was a long drive but we did it. Pumpkin got a little restless on the way home. I got pee'ed on, changing a diaper in the car on my lap without a changing pad is something i dont recommend. :0)  It was very good to finally see Scotts side of the family as we have been unable too.
We also got her 6 month pics done as well so i cant' wait to post them when i get them. We are very very thankful to have our dear friend Christie Tull in our life as she has been capaturing more than just memories for us since day one, it was a honor to have her does these as 6 months is truly a milestone. . We are eternally thankful to have her in our lives and as she calls it's , "mackenzie's personal paparazzi."

Wednesday, January 25, 2012

Updated Frustrations..

Ok. so here goes.. and ill try to break it all down as i feel like i'm in information overload and it's just beyond frustrating. So lets see.. i guess i will begin with ohio news first..

So yeah, that doctor in ohio never even bothered to give us a call to talk or anything. But yet apparently he called last week and spoke to Mackenzie's doctors here and pretty much the gist of what we were told is that he feels she can be treated with a oral medications and that he could send the protocol down and then have one of his collegues/friend (i forgot how she was explained to me) but she is a radiologist as well but at the children's hospital over here but he felt that she would be able to treat her with his protocol and that he would consult if need be. (how can he consult when he can't even return phone calls, it's been over a month now). And from the get go, we have always been under the impression here that the docs she sees would only be able to fix if we had to get surgery or something but since we didn then it was out of their hands sort of with the exception of monitoring.  So the only good news i got out of that was there was to be no surgery. But we didnt get to ask any questions about the drug or anything like that or express any of our concerns so thus the frustration begins. Our doctors here in columbia, wanted us to first to go to MUSC just to see what they said and then compare "notes" and then we figure out a treatment plan. (ill explain more to the "treatment plan" here soo as it's kind of combined now with frustration)
So yesterday we went to MUSC. 2 hour drive but thank goodness weather was gorgeous and Pumpkin did so good in the car. She slept most of it. We get to MUSC which is a very confusing place and it doesn't help that the surrounding roads around it are majority one way. But Scott did a very amazing job even with being sick of getting us too and from. We finally figured out where we needed to go, got checked in, and what i thought was pretty neat was that they had a sign that said, "if you have been waiting for more than 15 minutes, please let us know." I was like what, 15 mins, that's awesome if that is about how long they make you wait compared to other places. We were there for only like 5 at most. We got taken back into our room and the lady ask for all our records and cds/imagies and i thought we were going to be there for a while for them to review everything, but actually we got seen pretty quick. And even though it was quick, you could tell they read over most of it as he was able to ask us about things in the papers and all. We saw Dr. Inmran Chaudry and Dr. Blair (not sure her last name) super super nice people. They took the time and answered all our questions, gave us a lot of information, even gave us options for 2nd opinions, told us his skill and comfort level of expertise. Overall he made us feel very comfortable. So his plan, he wants to do ANOTHER MRI. I'll come back to that as to why in a few sentances. But he said by what he can see, he is still unable to fully diagognis the tumor but it is a hemangonima, and it is vascular but he cant' tell us specficially. So he feels he also wants to treat with the same oral medication that we got told about just last week here in columbia. But the MRI is for 1)to better identify what kind of tumor it is and 2) to see how the blood is flowing in the tumor. He said that if the oral medicaiton did not work then we could try the injections but with injection you have to see how the blood is flowing because if it flows down around her heart and all with the issue of haivng the pda prior, it could travel back from the heart to the brain and cause Pumpkin to have a stroke. He did tell us though that it looks like the tumor is giving us a little bit of time so we got to sit on things. He said though that if left untreated though, pretty much it can start to stretch her optic nerve and cause more serious damage to where she would then need surgery. But he said that if it came down to that, she will have a pretty decent "team" of doctors to handle everything.  So we have another mri on schedule but since yesterday, Scott and I have been disscussing quite a lot. And here is why and as to make our furstration grow.
1) The medication that want to put her on is called propranol. It's a beta blocker, mainly prescribed for people with heart conditioins of sort. This will be something that she will be taking over a period of time. As she grows, so will her dosage. The biggest concern with this medication is going to be how it is going to affect her heart.  The difference between docs:
                   -If we do here, they want to admit Mackenzie back into the hospital for at least 48 hours and monitor her while starting on this medication. They want to track her heart rate and blood pressure for over a period of 48 hours and then show us how to do it all and then send us home and we continue to give her meds for however long.
                    -Doc in charleston said we would adminster drug, run a few test to make sure all is working ok, send us home and we do a follow up in 6 months, but if things change then we call him and just keep montoring from there.
2) we dont want to put her through another mri if she really doesn't have to yet. We have always wanted the less envasive way for Mackenzie and if we can go a more conservatate route then that is what we want to do unless we had no other choice.

3) When i called to talk docs here yesterday to give them the scoop, now keep in mind we have been under the impression this whole time, that the only treatment option we had is whatever the ohio doctor said as we didnt think docs here would treat, just monitor. So when i called them and told them doc in charleston wanted to do propranol as well it was pretty much in a nutshell, oh well we do that. We do that all the time kind of assumption.  So we are kind of like, well why didnt you guys give us that option from the get go instead of trying to get us to go and see this ohio doctor.

4)it just feels like we just keep getting referred to so many doctors who really dont tell us anything new and just keeps overloading us with the same information just in a different language.

So we are happy she can be treated here and it be closer but it's like where is our comfort level at now because it's so annoying that the docs here could have already tried the propranol but they didnt', instead they referred us out and we have been waiting for over a month just for a "plan" when we could have already tried this to see if it would even work before we explored the injection option. Or do we go with MUSC who is yes farther away but yet that doctor was very upfront with us, very informative, and our comfort level or at least mine, was a lot better with him and i didnt feel like i was going to have to keep getting the run around. But then i dont want to make her go through another mri. We are supposly meeting with docs here on friday to lay it all so we will seee. If we go with them then childrens hospital, here we come next week as the earliest. if not next then the week after. So now we wait till friday, well hopefully as i'm still waiting on confirmation on that as well..

Monday, January 23, 2012


So since my last post, not to much has change.. well sort of..Pumpkin is just growing more and more each day and every day i stare at her i always notice something different. Pumpkin has now figured how to suck her thumb. Kind of. She gets it most of the time but then other times she doesn't get that she has to let go of her thumb and index finger and she tries to get both of them. Still super cute regardless.  Her eye lashes are just getting so long. I'm so jealous of those as she gets that from daddy.  She is still such a daddys girl its crazy. She can be so fussy but yet I put daddy on speaker phone or he walks in the door adn she just looks around for him. She tries to figure out where he is. She is still sleeping so good during the night which is so amazing. She is still eating about 3.5 ozs every 3 hours.. Hence the chunky legs. :0) I can't get over that she is actually in size 1 diapers now. To come from a preemie xtra-small (ill try to post of pic of that later) which was still too big for her at birth to now be in a size one and not even 6 months yet is just blowing my mind.
I can't believe my stinker reached over 8 pounds. I was giving her till feb  to be 8 pounds but now i think she will at least be almost 9 by then. She gained 14 ozs in two weeks.  She is such  a little ham.
Tomorrow is our big day and first road trip. We go to MUSC (medical university of south carolina) down in charleston. We hope to get some treatment answers from them as we really havent got clear treatment answers from the doctor in ohio. heck he hasn't even called to talk to us. I'm excited and nervous all at the same time.OUr appt is at 930 so we plan on leaving no later than 630 am so this should be interesting.
I've been hanging in there. I feel like i have had some harder days but this past monday i met with some angel mommies and had dinner. They are truly some amazing women and I am so blessed to have them in my life and to have their support and love. So many people have lent such kind words and support buts its just different until you have walked these shoes. I talk to some angel mommies as well over email who have reached out to me and most day's  i can get through (thank you allie- you mean more to me than you ever know for us to have never even met) but to actually sit with angel mommies was a totally different experience for me. But it was what i was needing i hope. They showed me that their is a rainbow after the storm and i think i'm finally beginning to see it.
I know Alexis sent them to me as i meet with these lady as i met with them on her 5 month anniversary.

Thursday, January 19, 2012


I just had to do a quick post for you guys real quick. (sorry was working on a more updated posted but this was just too exciting not to share real quick)

Mackenzie went in for another check up today.. how about we have a

8lb 1 oz 

She gained 14 ozs in just 2 weeks. I didnt think she would hit 8 lbs until the first of feb. Formula does a body good.

Mackenzie this past saturday..

Tuesday, January 17, 2012

Monday, January 9, 2012

Grief is so bipolar..

This past week was Scotts first week back to work, and of course he would have to go back and it was 1) his long week (only days off wed and thursday) and 2) he would have to be on nights. So needless to say I pretty much had pumpkin every waking minute. But boy ol boy was she such a rockstar. During the week was a little trying but not as bad but this past weekend, our pumpkin slept every night for at least 7 hours. She even slept longer than that last night because my alarm didnt go over right and i ended up oversleeping. She didnt fuss or even spit up.. It was amazing but yet I am so tired still. I've been running on fumes for the past 5 months i guess my body just got really use to that and now that its slept a little bit, it doesn't know what to do. HOpefully my body can get back into tune. I know that wont be every night with pumpkin but I hope to have more reoccurances with it.
Today she had another eye appointment with dr.cheeseman. We officially got the clear bill of health on her rop. He said there was actually just a small amount still left in her right eye but nothing to worry about so we dont go back and see him for another 3 months. He wants her though to wear a patch over a left eye for 30 mins once a day so that it will her use more of her right eye and get it a little more stronger as time goes by. So now we just are down to seeing. Dr. Cope on a regular basis. I heard back from MUSC also today on getting an appointment to go and talk to some other doctors about her tumor. We get to go and see them on the 24th. I'm so excited and nervous all at the same time about that appointment, so you guys know i will be sure to keep you up to date once we hear.
So i didnt last long on the whole crying thing in my last post. For those who are reading this and dont live in south carolina, New years day brought a lot of tradgey to one family here locally. The Longstreet family were on their way to church Sunday morning around 1040 am when their minivan was hit by a drunk driver.  Their 6 year old little girl, Emma went to be with the lord, their 3 sons were in icu and the husband suffered a broken neck. The mom miraclous turned out to be ok but to have her whole family ripped from her in such pain is just unbearable. But yet through their faith, this famiy is staying strong and they aren't even mad at the 26 year douche bag who hit them and took the life of their one and only precious little girl. They have done some interviews and hold up all of their little girls pictures and do it with such strength. Although the mom did point out and maybe this is what it is for me since we are home and the visits from friends and what not have stopped for now due to our request and maybe cause i dont get out much, but she said something along the lines that right now she is very strong with friends  and family support etc, but when the months pass and everyone and everything has kind of settled, then what.. This mom has suffered such pain and yet is just so strong about it.She does credit her husband as well as being her rock and the same goes for Scott, If i didnt have him through all this, lord only knows where I would end up. We have gotten a lot stronger through all this even though we seem to bicker a lot or just stressed out more, at the end of the day we come together as one and as one with our little pumpkin.
So maybe that's what happening to me. For our nicu life, i had to stay strong. I had to keep going because Mackenzie was fighting hard in there and it wasn't fair to show her my weakness when she was kicking butt in the NICU. I was always surrounded by my nicu family and then being home, it was always scott and I. Now that she is home, and we are back to reality of life and how its going to move forward and overall her health is amazing considering and we are very blessed, but it's hard not to sit back and wonder how it would be like with both my girls. How would life be when one little girl is crying and the other one starts up? There is not a day that doesn't go by that i dont talk/think/miss Alexis, and there wont be a day that goes by that I wont share her memory, but I still can't look at any other pictures besides the 3 we have up without falling apart. Only a few people know this, but before Alexis passed, we got the oppurtunity to have her baptized. One of the nurses took pictures with my camera and I've yet to really even scroll through my camera for new pics. I finally thought i could do it friday night, and I open one of her baptism pictures and i just fell apart. I just held Mackenzie and just cried. My heart hurt so bad. Why did he need to take my little girl..  Mackenzie and I went and sat with Alexis for 2 hours yesterday. I held up ok with the excpetion of the first few moments of getting there as there was another family that just laid their father to rest right near Alexis and the daughter came over and had small talk and comment on how precious Mackenzie was.
I'm sure you guys as well as everyone else are tired of hearing my saddness, heck most of the time i' get mad at myself about it, but i just can't.. Its just so hard looking at life and constantly wondering how it was suppose to be having twin girls and have 2 of everything and dealing with life that way.

Friday, January 6, 2012

Formula does a body good..

Just wanted to do a quick update real quick as all we had yesterday was a follow up with dr. cope.
We are so excited to report that Pumpkin weighed in at 7lbs 3 ozs.. Shen went from 6lbs 5oz to 7lbs 3 ozs in just two weeks. We are so excited and just keep hoping she can keep it up. Dr. Cope said everything checked out ok and things are looking good and just to come back in two weeks.

Thanks for those who have commented to me about the Ronald Mcdonald house. Makes me feel a lot better. Still waiting to hear. Called yesterday and the lady said it might be next week before we hear. She said though that because he didnt make any notes that means that he didnt feel that it was something that needed to be seen asap so i guess that's a good thing.
One of my dear friends, sister, works at MUSC and she reached out to some of the doctors there and come to find out, there are doctors at MUSC who do this same procedure that was described to us so they are wanting to take a look at everything as well to see what  can be done and maybe closer if that is the route we decide to go. The treatment from what they told us is called Scleotherpay. So crossing my fingers all across the board and am totally touched by my dear friend Nicole for reaching out to her sister and her sister reaching out for us without us even knowing. We love you guys so much. Now we just wait to hear what all doctors involved have to say.

Pumpkin in her little snow suit ready for the day.(this was this morning)  not quite sure why i can't flip this pic as it's flipped on my computer.. mmm. well enjoy her cuteness anyways.

Wednesday, January 4, 2012

2012 = Change

It's hard to believe that its now a new year and that my girls also turned 5 months old. It's been 5 months since Scott and I world has changed forever. Sorry for such delays but the holidays really got me down and I just felt like i wanted to isolate myself. I put on a brave face and smile where I had to but i'm glad to see the holidays gone for now.
New Years came and went. I actually passed out before 12 and Scott rang in the new year feeding pumpkin. I dont really have any medical updates yet on pumpkin as we haven't had that many doctors appts recently. She sees the Dr. Cope tomorrow so I can't wait to see what her weight is up to. She has got to be close to almost 7 pounds. We are still waiting to hear from the eye doctor. Come to find out, it's not a doctor in Philly, the doctor is actually out of Columbus, Ohio. HIs name is Dr. Shiels with Children Radiology Insitute. So now it looks like Ohio will be our traveling site here in the future. We are waiting for hopefully our phone conference from him but so far nothing. Has anyone ever had any experience with the Ronald McDonald house?  When speaking to the one of the systems to get registered as a patient with this doc, she said that if need be we can get set up room and board at the Ronald McDonald house with no charge which will be huge help but then if there are other sick kids there, i dont want to take that chance ya know.  Ohio will be something we will have to drive as flying is going to cost to much if we have to make multiple trips and i dont think iwill be able to pack the whole house as easily.
Pumpkin overall is doing amazing. She is such a daddy's girl. I love it and am jealous all at the same time. She only looks up and around at Scott. When he walks into the room, she could be sound asleep, but hears his voice and she wakes up and starts looking at/for him. And he is so darn cute as you can see when she does that, it totally melts his heart.   Scott went back to work Monday night and boy was that hard. Pumpkin did not want to sleep as i think now we are experience gas effects so needless to say I got only 2 hours of sleep. But if that little stinker didnt' sleep all day for the nanny. Last night we got about 4 hours or so worth of sleep. She didnt get to see daddy but for about 5 mins as this week he is on nights and its' his long week so i'm sure she will be excited to spend the day with daddy  tomorrow as he is off.

2012 is going to bring some change for me. And with 4 days in, i think i'm doing ok so far. I haven't cried yet. Past few months I have just been in a funk/pity party and yeah i know i had within reason of being so but I need to move on. Regardless of how bad i have it or what not, there is always someone with it worse and I need to focus on all the good I have right now. As truly all my good are true blessings from Alexis. I miss her with all my heart and a huge part of me is missing and always will be but I can't keep dwelling on all my sadness. I need to refocus all my sadness on something else and turn it into something postive. If i keep dwelling on my sadness I know at some point, it's going to take away from Mackenzie and I can't do that. Alexis passed all her strength on to Mackenzie and continues to do so and for that I need to do so as I know that is what Alexis wants. Alexis in her short life had purpose and although she is not phycially here, her purpose is with us every day.
So wish me luck because here goes..