Christmas was really hard for me and i just couldn't get into the spirit of things. I did the family thing but that didnt last long. With everything going on and all the doctor appointments, it just made all the days run together so that added into it not really feeling like christmas. And as any day though, it just never feels right to celebrate because im missing Alexis so much and it was suppose to be both my girls. But just wanted to share with my blogging world our Pumpkin's first official christmas picture. We hope everyone had a bless Christmas.
Sorry blogging followers. As most keep up, the 16th was just last week and that marked the 4 month anniversary of our sweet little angel. I find myself more and more just wanting to be isoloated on that day and days surrounding it. A cloud just comes over me and I just want to be. We got to spend the afternoon having lunch with Alexis as it was a nice day and we actually got to take Mackenzie out and just sit with her. We sat there for a little over a hour. We got to meet the wife of the man who lies closet to Alexis and that was nice as she told us a little about her husband so now we know a little bit more of the man who lies near her.
getting ready with daddy to go see sissy
Mommy with both her girls..
sunday also fast approached and the day just slipped from me as i was running all day and scott and i even attended his region christmas party. It felt good to finally be in the mix of things as I assisted where i could. But come 1 am it hit me that it was my first Sunday that i didnt go and see Alexis and it totally crushed me. I layed in bed and just cried. I just felt so horrible that i let life get in my way of going and sitting with my angel. I was devasted. Needless to say, i went straight after work and just apologized as much as i could.
Yep you guys read right, I went back to work this past Monday. Although scheduled to be off till the first of the year, I thought that as dad and i go back to work at the same time, that wont be a good time for us to transition into a schedule with her so it would be eaiser for us to gradually do it and since i have most days off for the holidays, it would be easier for me to go back since im only working a few days out of the week. And both of us being without pay right now is getting a little old as well. So far so good. A little hetic first day back but that was to be expected..
Well Mackenzie's 2nd MRI finally happened today. It went a whole lot smoother than her first one. They only had to stick her one time to get a iv and they did it after she was sedated. We got to the Children's Hosptial by 730 a.m. and got all registered in. They took us to the back to get us all ready and introduced to all the doctors and nurses and all kinds of different people. The childrens' hospital is super nice and has such vibrant colors on the walls. They brought in little toys that they thought Mackenzie would like so for those who donate to the hospital, keep them coming becaues they do truly use these items. They also had a lot of wagons/push cars in the hallways which i thought was pretty cool as well. We got to go back about 945 for them to go ahead and put Pumpkin to sleep. I held up so good until that part when we had to kiss her goodbye as we had to go back into the waiting area. We loved her and said a little prayer for her and I just cried. Pretty proud of myself though as that was the only time i did cry.They said it would take over a hour and then she would go to recovery so we waited. Here though, parents have waiting room and then if you come with more family then they have a nother waiting room for them. They only allow 2 family members in the actual children's area as to not overcrowd it. The other sucky part of the day, in recovery, they only allow one parent. I knew Scott wanted to go but he knew that she would want mommy so I ended up going back. That was really hard deciding on who should go back and it really sucked it had to only one of us. No exceptions. Needless to say our little pumpkin was up and wide awake and was being loved on by the other nurses. She got really fussy as i was walking in but mommy had the magic paci with me and as soon as i gave her that and in my arms she went, she was fast asleep.
RESULTS: It is a vascular tumor. They said that it is larger than they first expected. It actually fills up the entire orbit of her right eye. Its called something like a hemogematic tumor. something like that. They said that it looks like her nerves and bones are actually molding arounding it so that is semi good as it is not affecting anything negatively yet. It's kind of like her body is actually catering to the tumor. It is a beign tumor but we were told that it will get bigger and there is a chance that down the road at least first 2 years of life, that it could come back again. They think it was something she was born with, it just became more noticable over time. The good news is, she wont need surgery to repair and that it is treatable. The semi bad news is that there are only 2 doctors(they are called interventionlist radiologist) in columbia who are able to treat this kind of tumor but we are unsure yet if they will treat someone as small as she is. So once they see her images and get the history of her and if they dont feel comfortable treating her then our only other option that we have been told about thus far is another doctor but he is out of philidephia, pa. He is the actual closest childrens doctor who operates on these types of tumors. So right now her images are going to be disbursed and consulted with these doctors to see if she needs immediate treatment, or how long she can go without treatment and if they need her to get bigger or if philly here we come. Dr.Bradley said that it is a pretty decent size tumor but from what she can see right now, we are in the best case senario. Treatment is going to consist of injection shots to the vessels. She will need more than one treatment. Pretty much they will inject a fluid direclty to the vessels and it's suppose to collapase the vessels. Its kind of like the procedure of how to get rid of vericose veins. We dont know how many treatments she will need until we hear from the other doctors but they do know for sure it will be multipe over time. We hope to hear something in the next few days but with the holidays coming up they said it could be the first of the year before we hear anything.
Pumpkin gowned up for her MRI. She was not happy, she wanted a bottle, they even had small little caps that were handmade. too cute.
We have settled into a room for the night since they had to sedate her and since she is under 60 weeks, it's policy that we have to stay for over 24 hours. Mackenzie has been doing great. She has been sleeping most of the day in my arms as the bed is too big for her and she doesn't like laying in such a open space so dad had to go and get her bed that she sleeps in. She is eating pretty decent and bowel movements all seem to be working good. Doctor has already made rounds for the night and said that she looks really good. If it wasn't for her age then we could go home but they had to follow policy. Rather be safe than sorry.
Her "crib", yeah not happening.. It creeps me out just looking at it.
Thank you everyone for the support and prayers. Thank you for caring and loving our little princess just as much as we do.
We have reached the highest peak of our rollercoaster ride today and it has truly left us in the clouds. Scott and I have been losing hope over time and we hope this time our happiness will last a little longer this time. Everytime we get overjoyed, we get knocked right back down. But today we are going to stay happy. Let our hope and faith be restored for just a little bit longer. Our sweet angel Alexis is truly watching over Mackenzie and we are thanking the good lord above that he is allowing Alexis to help Mackenzie heal.
We are so excited to report that our Pumpkin hit 6lbs today.. A big 6lbs. It's so hard to still believe.
And wait for it as that is not even the icing on the cake. To top off her weight gain, we even got even better news. We had a heart doctor appt today and they did a echo on her. She was such a true champ, she even fell asleep while they were doing the echo. (something about her daddy here lately that she is just loving and so comfortable by her daddy's simple touch, he held her hand the whole time and she didnt even cry or anything) Well anyways, we were still on cloud nine about the weight gain so after echo we waited for Dr. Williams to come back in and gives us a report.
He comes in and tells us he has a christmas present for us, and both of us thought, oh lord what now. How about our christmas is from Dr. Williams... HER PDA CLOSED... we were all shocked. Even the echo tech. Yes that is correct, the pda that all ehr docs said was a pretty decent size and they felt pretty sure it wasn't going to close up on its own since it has been looking that way after each appointment, it is closed. He said he sees a very very small about of blood flow that shouldn't be there but that 's nothing worth worrying about. He said he doesn't need to see us for 6 months and to have a very merry christmas. He said as far as he is concerned about the whole sedation thing for her MRI, she is cleared on his end as there should be no issues. You could just tell that he was just as shocked as we were and we were all just pretty speechless.. One less doctor to worry about on a weekly to biweekly basis. We still can't believe this news..
Also today, daddy got his first dose of 6 hours without mommy. I'm gonna try to go back to work next week and since daddy is off till first of year, he will be staying home with her all day. When daddy has to go back to work, she will be getting a nanny on his days he will be working and then his days off she will be with him.
I went to work for a little bit to catch up, I saw my beautiful angel princess and gave her the good news about her sister, saw my niece and nephew, and then headed to girls night for our annual christmas ornament exchange night. To my surprise, they actually turned it into a mini baby shower for me. It touched my heart in so many ways and i'm so thankful to having such a wonderful group of friends who have love us unconditional and still continue to look after us. Thank you Tina, Lisa, Tee, Erin, Dallas and Nicole.
Jax-about your comment, yeah i dont get why everyone thinks she is going to gain so much weight at one time as well. I am pretty tiny and all they have to see is that i've been this size since i was like 10 i think. I only gained 28 pounds while pregnant with my girls and i'm pretty much all but 2-3 pounds back to my original weight. More pics will come overtime. With everything that has happened, mainly after Alexis passed, we have just been a little more guarded on pics as we didnt want people to have as lasting memories of all the tubes etc. I dont know, it's a little hard to explain and one day i will be able to explain it but that's about all i got right now. Our girls are such miracles and that's what we want people to see as they shine. We dont want people to see all the tubes and not really take pity per se, but the tubes and all aren't the true them. Thank you for your kind words and support and for continuing to follow our story.. It's coming with a lot more chapters.. Hopefully nothing but postive chapters..
Being of only 4'11 i was always to short to ride certain rides which was ok most of the time as i'm afraid of heights but apparently I'm perfect size to keep riding this roller coaster that we are on.And once again, just when i thought we got off and were doing good.. Story of my life.. I know there has been quite a delay since my last post so here goes with all that has transpired..
Well I guess I should semi start from the beginning to give a better idea and so that way for those who future read this and experience the same thing wont have to experiece the same results as we are and to keep pushing regardless of what any of the doctors tell you. A second opinion should always come into play and from here on out, that's how its going to be when.
About 2 months ago we noticed that Mackenzies right eye was brusied and semi buldging out. It wasn't as noticable when you look directly at her but if you looked from head down it was quite noticeable. Well this was also around the time her ROP got diagnoised and she was getting weekly to biweekly eye exams. So since she was seeing Dr.Clark while in the NICU that's who the doctors had looking at her eye. Well he told us that it was just soft tissue and that it's common in preemie and that it will go away over time and plus he just saw her a few days earlier and it didnt look alarming to him. (this was the first time i asked about it and since he did just see her i just agreed with what he said and plus the ROP exam is not fun and always makes her eyes puffy anyways) well overtime, it still wasn't going way and I kept asking about and they just kept saying the same thing. She came home with the buldge and it never seemed to bother her nor was there any leakage or anything so we just felt that it would clear up over time.
Head shot down..
Fast foward to wednesday of last week. Sharon (the assistant who always came in with Dr. Clark for her ROP in the NICU) also works at the lung doctor we go to. Oh also.. Wahoo, Dr. Brown didnt' yell at me and we got to stay off the oxgyen. So now we are down to just the apena machine. Well anyways, she loves pumpkin and always comes in to say hey and she felt that her eye looked a lot bigger. To me it comes and goes and looked about the way it alway does. So she went ahead and called over to the eye doctor, Dr. Cheesemans office who we were suppoe to see in Jan (eye doctor who we eventually end up with in the long run) so they sent over Dr. Ross who is a resident over there which I thought was super amazing that they would come to a different office to just do a quick exam real quick. Dr. Ross checked her pressure as he thought it had to much pressure but it was actually in range of where it needed to be. So next step was to look at her scans from the NICU as we thought she ahd a cat scan and all but all she had was ultrasounds and brain scans so from that point he scheduled a MRI to see if that would give him a better insight so he scheduled it for the next day. So then we get a call later that night from the childrens hospital, which by the way if you haven't been to Richland Children's hospital, that thing is super nice but more on that shortly. So we get a call and pretty much get told that the MRI is a no go because the anesthesiologist dosen't feel comfortable sedating her because of serveral reasons (she just came off oxgyen, her pda, her size) So called Sharon to let her know and she was going to talk to Dr.North/Cheeseman/Ross on what the next game plan in. So thursday rolls around and we are told to be on standby as they were working on teh whole MRI and then we get the call around lunch and get told to be at Childrens Hospital by 245 as they were goign to try to MRI without sedation. And to all preemie parents, a heads up that if your child is under 60 weeks and they ahve to get a MRI outside of the NICU, then it will be a overnight stay for them to monitor her/him with the sedation and all. (yeah we didnt get told about that part until later that night)
So off we went and needless to say that was the worst thing by far i've had to witness my baby go through. at least int he NICU i was a litttle shield by things. We had to go into the Day Hospital at the childrens' ward and the people there were so super nice but that didnt help much. They had to put a iv into pumpkin which i wasn't aware of in order to put contrast into her so that the MRI would be easily readable. It took about 3-4 nurses/assistants and needless to say they weren't able to get a good vein to keep the iv. They had to stick my baby 3 times even in the head and she was soooo miserable. It really broke my heart and I had to leave when they told me they had to try through her head. I just sat and cried. Daddy was so strong though as he stayed with her but it just broke his heart and it was pretty obvious. We said no more after that, if you can't do then we wont do it.. It was just horrible and i was so annoyed and hurt becuse i just kept thinking that if that everyone would have just addressed my concern while in the NICU then we wouldn't have to be going through this while she is home. Needless to say I just held her and comfortable her the best way i could and they finally got the go on doing the MRI without contrast just to see what it could possibly tell us so off we went about 2 hours later. Since it was already pretty late in teh evening we wouldn't get the results till next day so off we went home and poor pumpkin was just so worn out the rest of the night. I just was so upset and cried.
Come friday morning, we met with Dr. Cheeseman to get the results, and come to find out, it thinks by what he can see of it, its some sort of tumor. By the signs thus far of it and just the mass they saw in the mri, that's all they can really say. They can't officially confirm what it is since they weren't able to do contrast so they couldn't give us a form of treatment yet. We got referred to another doctor in the practice, Dr.Bradley as she is one of the sugerons and surgery was a option to get tissue sample of the tumor to identify what it is and how to treat, but we couldn't meet her until Tuesday so the weekend came and you guys will be proud, daddy and mommy both went out and we got their godmother Katie to come and babysit. It was the SWAT christmas party so off we went. Yeah i cried pretty much all the way there and when i got there and saw everyone (I haven't seen the team since Alexis's funeral so it brought a lot of emotion back to me) Their embrace made me sadder even though i know it came from such love and finally after going through everyone and getting a drink, i finally was able to calm down. I even laughed. But we also drove seperate and i left before daddy as pumpkin was hungry and I didnt tell Katie about that yet because i figured i wouldn't have lasted that long
So today we met with Dr. Bradley. She feels that it's a vascular (blood vessel) tumor. Meaning that it's normal blood vessels that have enlarged and is developing in a abnormal spot. But she can't tell us 100% because there was no contrast the first MRI. So needless to say, we are scheduled for another MRI and this time with sedation now. And now how sedation is going to work which just annoyed me more is that the OR anestheislogist will be the one performing the sedation which they will be able to do as they always perform on little kids but the ones who told us no earlier were apparently the Pediatrics ICU anestheislogist, so it's like why couldn't the OR angeheislogist do it from the get since we got the no from the pediatrics people. So now we have to go back to the misery of getting another MRI and will ahve our overnight stay at Richland hopefully soon. Dr. Bradley said she wants to do another MRI with contrast because if it is officially the vasuclar one then she doesn't want to stick a needle in her eye to get a sample and possibly penetrate the vessel and pop it so now here we go again. She did tell us though that if it appears different while doing the MRI then she will also have a OR on standby and she will go in and get a bioposy while she is still under. They told me that i will get to be with her while sedated and then i will have to hand her off and then i will have to wait..I'm so scared but I think the fact i'm more annoyed with it all as well is helping me hold off on tears right now. I just wish they could have done this while in the NICU since she was already in such care.. So now we are just waiting to find out when MRI is going to happen as scheduling needs to work with Dr. Bradley/OR/anesthelogist.. so to be continued..
Her little dress today meeting Dr. Bradley with her super cute tights..
Sorry for the delay in postings. My days have been truly running together for some reason. Probably lack of sleep again as Mackenzie is back to getting her days and nights confused again.
This past wednesday, can everyone believe it, our girls turned 4 months old. It's so crazy to know 1) i have a 4 month old and 2) that it's already been 4 months . Its even harder to believe that tomorrow will mark one month since we have been home and out of the NICU.
As much as we love Mackenzies' birthdays and all to come, it still just makes us just as sad. Its so hard to still accept that we are singing happy birthday in joy to Mackenzie, but then to know that before the day is over, we will also being singing happy birthday to Alexis at her grave with tears of sadness. We took her some pretty roses for her birthday and just sat with her for a bit. We didnt get to take Mackenzie out of the car as it was pretty windy and was getting cold but we did get to take her a few days later and take her out and let her sit with her sister for a bit.
Scott and I are now realizing that although when we lost alexis, it was a nightmare, but now it's just so much more of a nightmare and it's reality. I think while in the NICU we were just in a fog and so focused on the NICU life, and now that we are home, 1)we have more time to reflect and 2) we are actually having to start our lives. It's like our NICU life everything was on hold, and now everyday brings us something different. For 3 1/2 months we didnt want life to move forward, just Mackenzie's progress, but now life is moving forward whether we like it or not and we it's breaking our hearts to know we are having to do it without both of our little girls. Every birthday and every holiday is just going to be so hard but I never want Alexis to miss or be without any of the celebration as she is always in our hearts. I never want her to be a afterthought and I always want Mackenzie to know and feel that she has a sister and her sister is always with her even though she is not physically here with her.
Visiting with Sissy
Of course we got to spend Mackenzie's 4 month at a appointment and with her sister. We had the cardiologist and the gi doctor. Of course Alexis let us know that she was with us as our first appointment was with the cardiologist and they have like student assistants and what not. Well our student assistant for that morning, yeah her name was Alexis. When she said that, scott and i just looked at each other because not everyone in the cardiologist office knows our suitation and the fact that we had another princess. We knew from there everything was going to be ok. And so far it's still going ok. She still has the pda but the doctor still does not want to move on anything yet. So right now we get to see him about every two weeks.He's just goign to keep monitoring her until 1)if affects her negatively 2) till she reaches a decent weight to probably have surgery. So for now we just keep waiting.
Yeah the GI doctor, yeah well nothing to report on that except the fact that I will never go there again. I guess this is the only pediatric gi doc in town but I will drive to charleston or elsewhere if i have to than to go back to that office. Our appointment was at 130, but we got there early to fill out paperwork, how about we walked out at 330 without being seen by the doctor still. We waited for over 2 hours and we still weren't seen by the doctor. That was just rude and inconsiderate considering we have a preemie and there were all kind of sick kids in the waiting room. (i made scott wait out in the hallway with Mackenzie before we got called back to a room. But it was time for Mackenzie to eat and she was sitting in her carseat the whole time as we didnt want to pull her out with all the germs around. That is just crazy to have a appointment time and the doctor not even come in on time but yet if you are 5 mins late, then you have to reschedule and you still get charged.. If a doctor is that busy then they shouldn't make appointments right no top of each other. Over 2 hours waiting it just wrong. So until there seems to be soemthing wrong with her tummy area besides her reflux, we will not be seeing a gi doctor and if i have to then i will drive to charleston or wherever the next peditric gi doc it... I dont care to give that doctor our insurance money what so ever.
Overall Mackenzie is doing good. She is back to getting her nights and days confused but she is still such a good baby. We have upped her feeds to 75 ccs. She is almost to 3 ozs. She is getting longer as she is now over 18 in long. Hard to know that she is growing out of some of her preemie outfits already. We had to start a pile of things she can not wear anymore. Her reflux is still around. sometimes more than others but what can you do ya know. Doctors appointsments have seemed to move to about every 2 weeks but we are still having to keep up with 7 doctors. She did so good at one of her doctors appt that she had to give blood. She didn't even cry when they stuck her. She just hung out with daddy with the paci in her mouth. (i couldn't watch) Tomorrow she gets her rsv shot. :0( Oh and also although we dont see the lung doctor till tomorrow, currently Mackenzie has been without her nasal cannula since saturday and so far so good. So hoping the lung doctor doesn't make her go back on it since i took it off of her on my own. Well she refluxed really bad and it got all in her cannual and scott was passed out alseep so ic ouldnt' get it back on her myself so i said screw it, what s a few hours without it but she has been doing so good and she kept pulling it off so i've just left it off and so far she seems pretty happy without it. Now we will see if the doctor approves tomorrow or not but i'm hoping so. she is still on the apena monitor has that's pushing it for daddy to take away right now. To us she is filling out so much. she is looking so much more like her daddy. I swear i'm just going to be the nanny. Can't wait to see what she weighs in next week as i think formula is doing her some good with the weight gain. But if she is anything like mommy, she will reach a stopping point before we know it.
And for everyone who leaves me comments on here, please just bear with me as most likely i will respond to comments in my post. I thougth i had it all figured out to reply to a post on here but then when i try, it tells me i need to long in which i thought i already was but who knows. so to heatherandtravis- wow.. not sure who's blog you are talking about but kind of cool we were on someone else's blog. Thank youfor the kind words/support and if anything would love to hear more of your story as well. my email if anything is firstname.lastname@example.org