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
I've really never been the girlie girl type to always go and get my hair done or even wear makeup but today i finally took my friend up on cutting my hair/styling it. My hair was getting long and I have missed my highlights so I took her up on her offer. My friend Chelsea over at Carmen and Carmen in the Belk Salon did a awesome job.If you are looking for a fresh new look, you have to go and see her over there and she will hook you up. I never know that a haircut could make me feel like so much of a fresher person. I have never been to the salon before and it was nothing that I was ever use to. It was amazing. She did such a amazing job on my hair as i'm pretty picky about who cuts my hair but i haven't been able to find someone i trusted to color it in so long until now. I felt like a whole new person when I got home and it was finally nice to feel good in so long. I finally took the time out to actually do something for myself. I felt guility though as I was gone for more than 2 hours but the extra step in my bounce and Scotts look on his face when he saw it styled (now that is the only thing that will suck is that i wont be able to style as good as she did it but still ), it was worth the 2 hours away. So to moms who feel the overwhemling of being a new mom, take that two hours and go get a new do, from one mom to another, it is much needed and worth it. Or heck if you just are feeling down and not even feeling like yourself, i thnk it's something that will give you that extra boost.
Me and my princess after my new hairdo
Today also marked the day for a new step in the right direction. We had our weekly check up with Dr. Cope and we are happy to say that Pumpkin gained 6 ozs.. wahoo. She now weighs in at 5lbs 7 ozs. Formula is working. We finished the last bottle of breastmilk early this morning so she will now be on straight formula. They had to stick her on formula since she hasn't gained any weight since being home and it's working. And for me, I'm glad to finally stop pumping. I always said from the get, it's ok if they had to go to formula because I didnt know if I would be able to produce enough for both of them so i wasn't against formula ever. I'm glad she was able to get my breastmilk and that i was able to pump but if it's not helping her put on the weight then I will do whatever it takes for her to get some extra calories even if that means formula. And now it just means her spit ups are a lot more thicker than normal. Now also i dont have to take extra time of pumping, washing, and sterlizing extra parts.. wahoo.. We also get to start every two weeks with Dr. Cope instead of every week. Tomorrow we see the heart doc again and we also see the GI doctor to see what they have to say.
Pumpkin has been doing a lot better sleeping through the nights. she has a off day here and there but what baby doesn't. The cutest and latest thing right now is that she is trying to figure out how to suck her thumb. She gets it sometimes but then it freaks her out. She gets her thumb near her mouth but then she doesn't realize that she is suppose to unfold her thumb and then she is over it.She is trying to. hold her bottles as well.. She is just getting to big for her britches which is crazy to know that she will be 4 months old tomorrow. Its hard to still know and accept that I have a 4 month old. Some docs consider her a 4 month old but then others consider her only a 2 1/2 week old new born as their due dates were on Nov. 11. so needless to say im' pretty confused on where her development should be. she is already holding her head up and turning her head but she has been doing that for quite some time now. She goes to town on her paci.
I'm a big girl mommy. I can do it on my own.
We also got to go out and put a new little christmas tree out for Alexis. It's hot pink and bright green. Colors i loved for the girls. I got a semi matching wreath but i think i'm gonna put that for Mackenzie so that they can having matching things. I hope she likes it as much as I liked it for her.
Well until tomorrow with a new day for a round of doctors, Ill update soon.
After much debate and the last minute decision, Scott and I finally decided to host Thanksgiving. We normally host every year but we were scared of having all the people int he house with Pumpkin this year. As much as i wanted to keep her safe i also in the same token wanted to get back to our life semi. So much has been taken away from us this year, I didnt want our first holiday to be taken away as well as we wont take Mackenzie anywhere except to doctor appointments, and if we didnt host then that means, there wasn't much of a holiday for us. I needed this day so we made it clear to everyone though, that no one was allowed to come into her room and we kept the door shut from everyone. We have had alot to be thankful for but I still felt a sense of emptyness. the holidays are going to be hard but in time i hope they become more managable. Scott finished up our curio cabinet we got for all of Alexis's things and it was a perfect touch for me on the holiday.
But thanksgiving went off with a bang. We had a large crowd this year, some 15 people. so much wonderful food from everyone and then we went and saw Alexis. It was late and dark but I still wanted to at least see her for a lttle bit for the day. The morning was spent cleaning house and cooking and partially napping as i didnt sleep the night before.
I knew Alexis was with us because Mackenzie has not pooped since Friday and so I tried prune juice and she did nothing but spit that all up, we even tried a suppostory and that didnt work. So needless to say, when we went to visit Alexis, i actually asked her if she could let her sister have a bowl movement because seh really needed it. Well for her 9'o clock feed,(and this was about a hour after visiting Alexis) wahoo.. she had a huge blow out and even during her feed so needless to say we now have a tummy feeling better happy baby..
I'm so happy to report also that the apple worked for our lung doctor. I would have given this man a hug if i wasn't holding Mackenzie so instead he settled for a air high five. We get to see Dr. Trey Brown with USC etc etc.. (pretty much we live in 9 Medical Park now down by Richland Hosptial) He let us come off the pulse ox machine. That was so exciting as that machine was getting worse. She kicked it would go off.. needless to say i was on the verge of throwing this thing. For my sanity sake i was so about to do whatever it took to come off of it because i'm not quite sure why we were on it and it kept me up more than anything. He said her lungs sound great so for now we are going tow ork on getting her off the other two machines. We also got a awesome treat when visiting this doc. We got to see one of our other favorite semi NICU nurse who we didnt know when we would see again. Dr. Clark (eye doc) has a assisant i guess you could say that came to the NICU with him and that was Ms. Sharon, and we thought we would see her when we go and see him but she only does the NICU with him and handles the synigias shots as well and apparently the lung doc offices is the same place we get her synigias shots at (rsv shots) so now we get to see Ms. Sharon every month still. We heard her voice around th.e corner and had to ask if that was her and sure enough it was.. We were alll happy as we love sharon.
Mackenzie is doing ok on the formula/breastmilk. She is still refluxing but not as much. But also it's a lot thicker also. We go and see the GI doc next week as they finally called and made an appointment. We are hoping to see some weight gain come tuesday when we go for our weekly visit with Dr. Cope. Either way to me, she looks bigger... she has come a long way from 1 lbs 6 ozs to where she is now. Oh and also we got to stop the home health nurse for now. All they were doing were weighing her which was pointless because we had so many doc appts anyways where they were weighing her. Plus they always called the day of and then gave us like a hour windown of when they were coming. We will pick up the home health though again when we dont have to see Dr. Cope every week but i dont mind that.
Scott is finally feeling better which i'm excited because i got to do some black friday shopping this morning. I traditionally try to do the whole 3 am thing but this year i just couldn't do it. I was so tired i couldn't get out of bed but finally around 8 i stumbled out and scored on some toys for later one for her. It was weird seeing harbinson quite on Black Friday. I was in and out no problem.
We have 3 doctors appointment this up coming week but they are spaced out a little better.
Well good night to all and to all a good night.
I wish that old saying "an aple away keeps the doctor away" was all it took. It seems like we add a new one each week. I normally dont mind them as much as that is about the only time we leave the house or just for a quick run, but this week we have them all back to back as everyone wanted to see her before the week is out. And everyone will be proud that I gave myself a little bit of time this past week with friends. I went out to the opening night for Breaking Dawn with the girls. Had a little aniexty at first but catching up with them was really awesome. then this past sunday was our dear friend Lynne's birthday so i meet up with everyone for dinner as daddy stayed home and sent me pictures. I'm a work in progress but it's happening slowly but surely.
Monday rounds of doctors consisted of Dr. Clark for her ROP and then her peditrician just for another check up. although we will be seeing Dr. Cope every week for a little bit. We are excited to report though that Dr. Clark said her ROP is at a Stage 0 in both eyes. It's not 100% but he thinks that in our next visit it should be completely gone and that will be our last visit with him. We will lose him as a doctor but then we gain Dr. Cheeseman for regular eye appointments. The peditrician visit went about the same as usual, althought he wants us to now see a GI (gastral doc)as her reflux is resticting her from gaining wait. So we also got to start supplement with a formula. which is ok with me because i'm slowly running out of breastmilk and my pumping is slowing down. And anything that she needs to gain weight i will do. She currently weights still at 5lbs 1 oz..She's only gained about 2 ozs since being home which is not good but hopefully she will start gaining soon with the formula.
Today rounds of doctors consisted of the dietian and the endiocrologist. The dietian wants us to up her formula and gave me the "recipe" on where she needs to be at and also added a mulitvitiam that so far Mackenzie did not like so we tried another brand so we will see. The endiocrologist pretty much said that Mackenzie doesn't exactly have a thyroid issue but the past few times they have tested her, her levels have been up and down so they think she is transic which means she is very borderline so just to air ont he side of caution they are going to go ahead and treat her until 3 years of age as that is more of the official age to see where a child is at with thyroid. She thinks Mackenzie wont have a thyroid issue but she just wanted to go ahead and treat. We will see them abotu every 3 months to make sure her dosages are ok as she grows.
Tomorrow we get to see the lung doctor. So hopefully we can just keep staying on the monitoring track..
Overall she has been doing a lot better with sleep.. Daddy is currently under the whether again so it has been a little extra tiring but i'm doing it.. My pumpkin is home and whatever it takes so be it.. although daddy has to go to doctor appts with me as i can't carry her monitors and oxygen. To me although she is not gaining weight on the scale she is looking like a little chucking butt to us. She is being more active during the day and sleeping pretty good at night. She is being more fiesty when she doesn't want to eat so that's really been the only trying thing. Well that and the monitors. The monitors have gotten worse as they switched them out this past friday as they will do every few weeks. Well since the new monitors, and we dont know if the other one was just defective or not, but her apena monitor/heart rate(brady as the doctors call it) has been going off a whole lot more. And for those who dont know what they sound like, When either one happens, there is a pierecing beep that doesnt stop until she self corrects.. You can hear it outside pretty much. We told Dr. Cope and he said most likely her heart rate drops are being caused by her reflux and that possibly the monitor prior was just defective. Heres to hoping the formula controls her reflux to where she keeps the food down and to where the montior would shut up. :0)
Well until the next doctor appointment and next update. I'm off to sleep for a hour since daddy is sick, mommy is on al lnight feeds..
Pumpkin had her cardiologist appt this past thursday to check up on her pda. We saw Dr. Williams with USC School of Med. etc etc.. According to him, her pda is moderate compared to where it started out but he says that it's still to big to where he thinks it wont close up on its own. He said that it should have had made better progress by now but it doesn't look like it is. So now we go back to him in 2 weeks and his concern is for her to gain some weight first,. He said that if she could reach 10 pounds then we will go to MUSC and have a catherer procedure there for the pda but if she doesn't reach the 10 pounds then we have to get the actual pda surgery. I'm not quite sure how long he is giving us for her to reach 10 pounds but he is pretty sure that she will need treatement one way or the other. Her weight is going to play a big role on which one we get done.. so now we have to wait until we go back.
This week we are not going to have a happy camper as we have back to back doctors appt mon-wednesday. she is a popular girl this week. we pretty much see all the doctors possible this week pertaining to her so I will have better updates late rint he week.
Thank you to all the moms who reached out to me after my last post and told me how it was ok. Its hard to feel that i'm not alone althought i'm not but it was nice to actually hear that it just wastn' me as being a first time mom. It was much needed words so thank you.
I thought for the longest time the next hardest day for me would have been walking out of the hospital with both my girls, but that day wasn't as bad as i thought it was going to be. I think having Alexis's things with me while being wheeled out with Mackenzie in one hand and Alexis' belongings in my lap made things feel a little peaceful/bittersweet. I was leaving the NICU with both of them in my arms in their own special way.
me and my girls.
Alexis last belongings..
But today marked the 3rd month of Alexis's passing. For the past 3 months, i've been having to live this day inside the hospital walls where it all started and ended. I had a scnse of calm walking the halls in the hospital at 5 am. Although sadden, it was just different.
But today I had to experience this day at home officially without Alexis and with just Mackenzie. The reality of it all sank in a little bit deeper. I think of combination of sadness and lack there of sleep made things a little worse as well. Normally on this day it starts witha trip to the hospital, work, then off to visit and sit with Alexis then back to hospital again. But today didnt start that way, it started with no sleep and me being extremely tired. Trying to get things in order to take a nap only to be waken up by phone calls. I couldn't get it together today. Then finally i got to go and see Alexis. Scott didnt get to go with me as one of us ahd to stay home with Mackenzie so that made thinsg feel alittle different as well. I didnt get my normal long visit as a storm was fast approaching but i think Alexis held off the rain long enough for me to get to sit with her as it started pouring shortly after. It's been getting harder aceepting that she is gone. I found myself trying so hard not to just ball the other days i went to kohls and was looking at baby clothes knowing that i was only buying for one. I feel like the barrier to my saddness wall is slowly cracking and i dont know how to keep it solid. With the holidays coming up, that doesn't make it any easier. I've got to find a way to get my barrier back because thats what helps me keep going.. I dont want my saddness to take away the joy and happiness of still having Mackenzie in my arms even through all the tiredness.
Being at home as been really super tired. The whole time in the NICU, i thought to myself, when we get home, I got this. i thought i had it because i was with her every single day at the NICU. I was there for feedings, diaper changes, bath time etc. But home it is totally different. I thought i was prepared but boy was i wrong. The first few nights were super super rough. well for me at least because i'm up more. She decided she wanted to stay up all night and sleep all day. Her feedings take longer it seems like and she is having reflux so much moer than waht i was use to in the NICU. The extra spitting up freaked me out the first few nights and the extra cries. I felt like i was doing so much wrong and i didntk now how to make it right. Needless to say, mom had a meltdown last week. But thanks to such a wonderful person and someone who i'm so happy to call my friend, her NICU nurse , Tonya. Tonya, i got to know as Mackenzie was her assignment on the weekends Tonya worked and i'm so glad because I also got a friendship out of her being Mackenzie's nurse. She has been keeping sane or at least trying to. She gave me the best advice so far to help me sleep and that is to keep her swaddled at night and then loose all day. and boy did that work the first night. And it has it moments where it doesn't work like last night but compared to last week, ill take one bad night compared to 7. And i also have to give loads and loads of love to my other friend Kristina P, as she gave me a boppy before leaving the hospital and that thing has been a true lifesaver. Mackenzie loves her boppy and she spends a lot of tiem in it.. It has semi helped with the reflux but it help when it's 3 am and we dont have to hodl her as long to help prevent soem of her reflux the way we had to do before.
I can count on my hands on how mnay times i ahve left the house. It has been a chanllenge because you just can't pick up Mackenzie and just go. Between her monitors and oxygen tank, packing her up to go somewhere is a workout. We only go to and from doctor appoointments. Next week is going to be a huge chanllege as we ahve 6 doctor appointments all by next thursday. So far we have been going to the pedtrician every week and Dr. Clark, retinia doctor, about every other week. Dr. Cope her peditrician said as of right now, everything looks good but we have to see him once a week. He is concerned that she has not gained any weight so now we also get a dietian/nutrionist added to our list of doctors. Mackenzie now weighs in at 4 lbs 15 ozs. Doctors appointments and the routine of her getting checked otu are so different then what we are use to. It's been quite a adjustment from the NICU world to the outside world.
Although our first week home has been really challenging, it all goes away when i get to hold her in my arms, in our own bed and just sit and listen to her snore as she sleeps. I'm up for any challenge as long as moments like that never go away. It makes ending such a hard day a little bit easier.
Finally getting to blog i wanted to blog also just seperately on our final day in the NICU. Our journey there has been a very long 3 months and some 8 days..
When we got word that we were actually a week away from going on I didnt know whether to freak out or jump for joy. As always the NICU offered nothing but mixed emotions. It has been a long time coming and something Ive been wanting from day one but now that the day was near it was like wow.. My reality was coming true after my NICU reality was what i was use to..
The week prior just seemed to be the longest week ever after all the weeks there but it was just like the final count down with dotting all the i's and crossing all the t's.
We had to meet with monitor people as Mackenzie came home on oxygen taken, apenea monitor and a pulse ox monitor machine.. This little lady ahs more stuff than anyone can imagine for someone so small.
Friday prior came and we had to do our "overnight" stay which meant that we had to take care of her all by ourselves without the assistant of the nurses. we were allowed to ask questions but they weren't allowed to help unless it was a dire emergency. We had to do on our monitors so that we could get use to them as to what to expect to when she came home and needless to say, Scott and I didnt sleep at all. The "bed" was super hard and it was different to hear different monitors compared to what we were use to having.
But we got through it and we passed and we also passed out the next day for a while. :0)
After that, the BIG DAY was finally approching.
I got up monday morning at my normal 4 am time as my one last time getting up having my 4 am routine to the NICU. She got her final foot prick from Ms. Erica (her normal lab monday person) but i left knowingthat this was it. It was time. The next time I walk through the doors, it will be to pack up the rest of our stuff and walking out with my pumpkin in my arms. I really couldn't say goodbye to all the staff as I kept telling mysefl, it's not goodbye its see you later. Goodbye was just to permnant and as we grew a lot of friendships in the NICU i hope they continue outside the NICU. And the emotion of "goodbye" I think was just too much for me as well.
Off i went to pick up Scott and back to hospital we went. The feeling was just too indescrible...they said that it might be before lunch before we got discharged but it was around 2ish before we actually could. Her lab work came back a little abnomoral and the list of doc/appts were all piling up. But whatever it took, we were ready.. We got our stuff packed and just waited. Thank you for our wonderful friend Christie Tull, she was there to capture every moment for us and we can not ever repay the thanks to her for capturing such a priceless moement for us and for something to always cherish.
Going through all our discharge papers...
As all the pictures that were taken melt and capture my heart, besides the one of our first family portrait with Alexis (see post below) the one that really brings tears to my eyes is the one with Dr. Coates. We loved all our doctors but Dr. Coates had a different/special place in our lives. For those reading for the first time or just to recall, Dr. Coates is the one who gave us the most devasting news/phone call. He was the doctor on duty with Alexis and he was the one who had to give us her official time. His signature will always be the one on her death certificate and now his signature will always be the one on Mackenzies last NICU papers.
In two months, this is the man that was a part of ripping my heart out and over time a man that gave me so many milestones with Mackenze and helped mend a piece of my broken heart by being a part of her coming home. So Dr. Coates and for all those who i hope dont need his skills but if you do, you are a man with such great skill and such a heart. You started off with me as a man I couldn't face to end up being a face I was happy to see over time. Although you were a part of me having so much pain, you were also a part of taking some of it away from me. I will always have a depth of gratitude for you and for how you put me under your arms even when I knew that wasnt the plan but as I figured out, we cant ever plan anything. You gave me strength and hope when i thought there was no more. You never sugarcoated to me in fear of my feelings although i could tell when you tiptoed. Two simple words from me to you mean more than you will ever know or i will ever be able to show you. Eric- Thank You.
Stayed tuned as I'm now getting on a better schedule so heres to our new journey and for all those who are on the ride with us now.... (and this post wore me out emotionally. dont know if i have another one in me tonight)..
Just watned to give a breif update as my phone etc has been blowing up.. We are happy to report that we are finally home. We got to come home on Monday around 3 and it has been a bittersweet whirlwind since.
Mackenzie had to come home on a apena monitor, pulse ox monitor and oxygen. The first night was very rough as I got no sleep at all so being up 24 hours was not cool. Apparently Mackenize did not like the bassinet we got her and failed to tell us that she likes the pack in play better until 5 am that following morning.
We are getting into the swing of things now. Tomorrow we have two doctors appointment which will be our first outing outside of the house. It's been all of bittersweet emotions but we are finally home.. Stay tuned as once i get suiated i will update a lot better.
Our very first stop. Our first family portrait outside of NICU. We love you Alexis.. You are forever in our hearts.
Although our precious Alexis is not here with us on earth she is truly watching over us and she is letting us know that in so many ways.
A month ago our church, Mt. Hebron UMC sent us a letter stating that they were going to have a All Saints Sunday. It will be where they will be honoring all the angels who got their wings this year and told us they would like to honor Alexis and if we could write a breif summary and just a few pictures. We sent it in and it just slipped my mind until now as the whole every other sunday due to Scott's schedules has got me all messed up.
Well this Sunday, Nov 6, will be the All Saints Sunday service where each angel will be getting a candle and there will be a little video of all of them. Please feel free to join us at the 11:15am service as we will be honoring our little girl. Mt. Hebron United Methodist Chruch- 3050 Leaphart Road., West Columbia.
But to even make it more special and touching and i know Alexis is nudgeing me.. but duh, sunday starts the new week right, well also Monday marks the day we get to take Mackenzie home. Yep that's right, Monday is the big day. So we get to honor our Alexis in a special service on Sunday the day right before we get to bring Mackenzie home. I have been scared all week not so much with brining Mackenzie home but more so in just starting a new routine with her because i'm so use to the NICU routine, but we are going to be ok. Alexis is going to guide us in the direction we need to go and we are going to be ok.
As our final days are winding down in our NICU world, we just have a few more things to do. Today Scott and I get our training on teh apnea monitor and on the oxygen tank. She will have to come home on both for a while. We have to do our overnight stay and make sure we can take care of her on our own. And as long as all that goes well we will get dishcared on monday before lunch time they say. We already have 2 doc appts set up on thursday and a series of other appointments that we will know once we get our discharge papers. Its hard to believe in 3 days, we will finally have our baby home..Mackenzie is currently weighing in at 4lbs 10 ozs. We are excited to say that her ROP went down to a stage 1 in her right eye and it is still gone in her left eye. She is now up to 48ccs of feed.They had to up her dosage as she is having to come off the extra calories as it's something we can't take home with us but she will also still remain on the rice ceral.
And again, we will not be having any vistors over for a little bit as we need our time to bond and also we are not taking any chances of anyone being sick and allowing her to catch anything. We know everyone wants to see and meet her but in due time... Our focus is her health and care and that is our number one priority.
It's been 3 months and 3 days since I got rolled into the doors at Baptist Hopsital and that is where I have spent every single day of every single hour that I have been able to. It's been my home, my safe haven, my security and now after 3 months and 3 days, we finally get the official word that we are GOING TO GO HOME next week. Last night Dr. Bendeck came in and asked if we would felt comfortable enough to go home with Mackenzie on oxygen and I dont think I could say yes fast enough. Once he kind of broke that down for us he said that he was going to get the process started. He said that it would probably be early next week that we can finally go home..
So the process: Mackenzie will come home on oxygen and a monitor so Scott and I have to get trained on that. They have to get all her other doctors lined up and all the paperwork on that ready. She will have to get her RSV shot and we also gotta get setup to get that done everymonth, Scott and I have to stay there overnight to make sure we are capable of everything on our own.. Umm.. I think that about sums up the "process"..
Mackenzie is now at 4lbs 6.6 ozs. She is on 8 bottles at 40cc's so this will be interesteing when she comes home as she eats every 3 hours and Scott and I haven't done her 3 am or 12 am feedings ever.. She is taking hre bottles like a true champ. She is so her daddy's child. She had a hearing test yesterday and they say she passed that. Her eye exams are still once a week but cant' remember what i posted in last entry, but either way, her left eye is completely gone of ROP and her right eye is still at a stage 2 but they see more postive development so they really feel like now that she will not need treatment.. wahoo.. We will keep going to see Dr. Clark until they say we dont need to see him anymore. :0) She made it to the crib this past friday and she has been maintaing her body temp really well. We even got to put her in a bouncy seat as she has reflux really bad but it kind of stinks becuase the only place to put the seat is on the floor and there is a draft fromt eh windows so she starts to get cold down there so we try not to leave her too long. She is also on rice ceral to hopefully help with the reflux and to keep more of her food down. But really, she is half asian and she needed her rice at some point. :0)
We still can not get over that our girls turned 3 months old this past sunday.. It doesn't feel like but then again it does. When we leave the hospital, my car will probably still steer towards the hospital for a bit. I mean ive been there every single day for over 3 months and really and truly haven't gone anywhere else. As excited as i am to leave it i'm also sad. like i knew this day would come but now that's its here, it's hard to believe. It will be the start to our new beginning but also without our precious Alexis. We know she will still be with us but we walked through those NICU doors with both of them and physically we are only walking about with Mackenzie but in spirt and in our hearts we will be walking out with both of them. We have left Alexis's box of belongs still at the hospital and I plan to carry that out as we are also carrying out Mackenzie. She will be with us, just in a different way.
We are leaving so many friends that we have made along the way but we know that although we are leaving the NICU our friendships will remain the same. It will just be in a different setting now.
Scott and I really dont have the house prepare as much as we like but we are now down to crunch time. We did get her bassinet put up last night and I've accepted the fact that I wont have her "nursery" really done but i had to let go of that becuase as of righ tnow anyways, she wont really get to stay in it as she will now be in our room for a good bit so i still have time. We are buying piece by piece as we go.. Baby stuff is outrageous but worth all the cutenss and neccessatie. Scott and I realized last night that this will be our last weekend without a child in so I am going to finally give him date night and go to the movies and dinner. Kind of sucks though that i have to learn all new stuff though. I was loving the milk warmer at the hosptial. Too bad i couldn't bring that thing home. :0) At some point i will have to look into bottle again but right now I hope to keep going on the ones she is using now. Its almost time for us to truly be mommy and daddy and this is one ride i'm ready to hop on and never get off.
But hang on to your stinking cute radar as these pictures are about to blow off the charts. (we got to play dress up for halloween)
She got to be daddys little Duke Blue Devil Cheerleader on Sunday
And of course our little pumpkin on Halloween..
VISITING ONCE WE ARE HOME: Please please know ahead of time.. SCOTT AND I WILL NOT BE ALLOWING ANY VISTORS FOR THE FIRST FEW WEEKS. She is still in a fragile state when she comes home and it being flu and rsv season we do not want any more germs in the house on what we cannot control. Please bear with us as in time everyone will get to meet her but we also need the time to adjust and get her adjusted and as strong as she can be and ready for all the people who are going to love her so very much. It's not that we dont want to see anyone but her health is and will always be our top priority. Thanks for understanding.
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.
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.
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."
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..
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..
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
So many backed good items
Assembly line for food...
THANK YOU- LOVE JULY, SCOTT, MACKENZIE AND ANGEL ALEXIS BARBER