Thursday, September 29, 2011

The fight in my little pumpkin..

Our little Mackenzie just keeps amazing me every step of the way.. Today's post will be a combination of what happened yesterday and what has gone on so far today as it's just so much excitement. Yesterday they reduced her oxygen flow from a 1.5 to a 1. She did pretty well on it with staying on room air the whole day and only had a few oxygen dips mainly because she was refluxing or pulling out her feeding tube.. i swear that child.. They also decided to up her feedings to 1 extra cc so she is now at 26 cc's for one hour and off for 2 hours.
As of last night our little pumpkin weighed in at 3 lbs 1 oz.. wahoo.. she is doing it.. we were still shocked to see that extra oz as she has been doing really good with her bowel movements and all. So hopefully she will just keep it going..
This morning when day shift and all were coming in and once into their shift. I got some exciting news. Well more so a picture, BUT.. they are going to try her out today without the nasal cannula. She is going to get to breathe on her own. They started her at 9:15 am. and so far she has done good. This is such a big step as we didnt think this would happen for a while. But she keeps pulling it out anyways and most times when she does pull it out, she stays pretty high on her oxygen saturation so i'm excited that we finally get to try. She might wear herself out on it but that's ok because we tried at least and we will just keep trying until she can permanantly come off. But heres to hoping that today starts her permanantly coming off of it. She is also getting a ultrasound today which we are little confused today as we dont think it's right but Scott is waiting for the doctor to stop by. They said the order is for them to look at her kidneys but we never recall that there was a issue with her kidneys or at least not that they told us about. So we are thinking they might just have it mixed up with her gall bladder as we knew that was a issue when she was on iv fluid only so hopefully that's all it is and all checks out.. so till tomorrow as we gear up for another eye exam... we are just going to enjoy her being off the nasal cannula .. wahoo..

Wednesday, September 28, 2011

She did it.. she did it, now mommy has to somehow..

Yesterday was mine and  Scott's 8th wedding annivesary. Although we had our usual dinner at our favorite place, it still didnt seem like it has been 8 years with us. I love my husband so much for trying to drag me away from the hospital even for just one hour to have dinner (which worked out because our favorite place is right around corner from hosptial) but i love him even so much more for being patient with me as I kept looking at the clock making sure we made it back in time before 7. (dinner reservations were at 6). Also i think i've finally figured out how to respond to the comments that you guys have been leaving so just bare with because wasn't quite sure about that. "kiley's mom- i would love to talk. i emailed you  a while back but i guess you didnt get. my email (this also goes for anyone who reads and are unable to comment) is  Just make sure to put something in subject line so that i don tthink it's spam and delete.

I wanted to get back because not only does Pumpkin get weighed but it was also bath night as well. We are so overjoyed to announce that our little pumpkin.. SHE WEIGHS 3LBS NOW...   She did it.. She rang in at 1370 grams. 2 ozs in one night. We could not believe it.. We actually had to weigh her twice just to make sure and both times it was a even 3 lbs. Scott and I both looked at each other with tears in our eyes and was just so overjoyed.. We were just so shocked as well because during the day, Nurse Rhonda told us that every diaper she changed, it was a poopy and she changed about 5-6 just on day shift yesterday.. Our little pumpkin is only going to keep going up from here..

I wish the fight that Mackenzie does everyday and the fight she puts in me every day i'm there with her would stay with me throughout the day when i'm not with her. I thought was doing a little better. I found a little bit of comfort. A friend emailed me another blog to read about a little boy named Patterson McKinley. He had a heart defect. To read their story you can go to www.caringbridge/visit/pattersonmckinley.   But what brought me a little bit of comfort was knowing and hearing someone else say and write what we went through with Alexis. There are no two stories alike but yet the outcome still remains the same.  Like the McKinley family, we looked at our precious angels with all their tubes and wires and knew that  that's not how we wanted it to be. We needed our precious angels in our arms just as much as they need to be in our arms.   This is just a snibbit of what his mom wrote: " I knew it was happening, you could see it.  In the next hours things really were awful, but I was very grateful for one thing.  Making the decision to let go was the worst thing I have ever done, but it was made easier by the fact that I wasn't really even looking at "our" Patterson.  His body was there, but he wasn't.  There was no smiling face, no kicking legs, nothing that truly was "him."  And for that i am thankful because I didn't want him to be in a situation where he was attached to things forever.  It felt somewhat good to be able to finally say, take those things away, he doesn't need them anymore.I think this is why Dave and I have had some peace about this whole thing.  Trust me, every moment isn't glorious.  We get upset and miss him terribly.  But there is a lot of relief in knowing he isn't sick anymore.  He can kick his legs without a cast or bar.  He doesn't need a helmet, his head is perfect!  He needs no more medication...and he can eat all the Krispy Kreme doughnuts he wants! I can truthfully say I have no regrets with my son.  Yes, I wish I could see him one more time, or kiss his head once more, but I was there for him when he needed me.  I did all kinds of things for him that I NEVER thought I would have to do.  We took him to every doctor appointment he needed.  We stayed with him and made sure he was taken care of.  I hope to live the rest of my life the same way."
I thank you McKinely family for saying what I felt. I knew Scott and I made the right decision for Alexis but it will never make it better but to hear someone else put it in words and say it as well and to know they expereiced that same moment we had to, helps make the decision we had to do just a very small bit easier. Our little girl is being the gymnasist in heaven the same way   that she was in the 2 weeks and 3 days on earth, but in heaven she is doing it without all the tubes and without everyone pricking and pryer at her.

Yesterday I had a good day to where i think it was the first day that i really haven't cried. I was even so proud of myself because when leaving the hospital yesterday I finally saw my high risk nurse who was with me through delievery and all, Mindy B. I've been wanting to see her since Alexis passed but I just knew I couldn't. I actually hugged and spoke to her without balling.  I could feel the tears wanting to come out but they didnt make it like i though they would. I just dont get how I can handle some people and not so much others. In the hospital I only had a few break downs but yet back in the "real world" I can't face anyone because I always break down. Everybody keeps telling me how strong I am but yet I feel so weak. For example, the fundraiser coming up for us, I have been asked if we are going and as of right now, I dont think i can go and deal with so many people who has seen our pain and hurt and have shared in it with us.  My OB prescirbed to me Zoloft when Alexis passed. Everyone keeps telling me to take it but it scares me to and I have so many mixed emotions about it. .  Mackenzie's doctors have told me it's ok for me to take while i'm breastfeeding but then i feel like it's just another form of medcine going into her body which I dont want.  Then i'm afraid that it's something that I might not be able to come off of and then what.. People who have been on it tells me that it helps takes the edge off a little bit with the anxiety of dealing with people but i keep thinking though, isn't part of grieving, crying? If you stop that and dont get it out, how does that make it better by building it up? Eventually I'm gonna have to deal with it again right? And then I also look at it like if i take it, then it's another thing that has defeated me. My little girls fight and have fought since day one,  and they are doing it and did it as such fighters with such will, so why can't I? Somehow I got to get  back....

Tuesday, September 27, 2011

Just another hurdle..

We knew from the start even before we got pregnant that our journey wasn't going to be easy, but then again who's is ya know.. But I think it gets to me more when things seem to be going good, bam, you gotta face soemthing else...
Mackenzie had another eye exam yesterday and not so bad news but then not very good news either. Her eyes have gotten worse but she has not reach stage 3 yet (and remember stage 3 is not where we want to be), but she is at severe posterior zone stage 2. (still stage 2 but a lot worse) . The doctor said that in his experience, he is heading to stage 3, the only thing is, when will that be. He also said though, that overall she looks really great to still be young as most babies he sees a severe posterior zone stage 2, the baby is a lot worse off as far as breathing etc.  She could stage at stage 2 for a while and there is a chance she can regress but not likely at the rate she progressed. So they discussed treatment options. We can't do anything yet but they wanted to go ahead and have us start weighing our options as there are such pro and cons to each.
Option 1:  The eye doctor really believes that she is a good candidate for what was a clinicial research and only done on 150 babies, and that's called Avastin. Pretty much, it will be a shot into her eyes which it's like a cancer drug. She wont have to be put on the ventilator and she will just get a mild sedation so that she doesn't move while they are doing. The procedure will only take about 30 mins or so.  In the clinicial research it had a very high success rate. And with this procedure, from what i understood, it's kind of a one treatment kind of thing. We just have to keep with follow ups just to make sure things keep progressing the way they need to be.  The only downfall to this, we dont know what the long term affect is going to be. It hasnt been around long enough to see what affects will be say 10 years down the road.
Option 2: The laser treatment. This will be pretty much where they go in and laser off the bad part. This has been the most common form of treatment, well actually the only form of treatment pretty much for ROP. If she was to go this route, she would have to go back on the ventilator for how ever long it takes her. They are familiar with long term affects with this route and there is still a chance even with this, she can be nearsided etc, but there is also a chance it can fix all.  But there's a chance that she would need a nother treatment down the road as well depending on how much is removed.  This way is less invasive.

These are pretty much our options in a nutshell. We do nothing, she will pretty much go blind. (and please understand, that this is just a summary in my own words, please do not take this for any research or anything, google to get all the correct and definite terminology, it's a lot so i just like to summarize in my own words)  The biggest thing which each one though is that after either one, it's not over. Mackenzie will have to follow up for how ever long it takes which is fine with me. If i have to take her everyday then so be it to give her the quality to see properly , i will live at the eye doctors office if i had to.  But that is what is kind of sad because the eye doctor kept stressing follow up appts because apparently a good bit of parents dont do follow ups and then the ROP comes back, or the child goes blind. In other cases that one treatment is all thtat is needed bu really how can you not take your child back to help better their life which just a simple visit. I just dont understand. But for now for us, we just wait. She has another exam on friday and we are just going to keep going from the results of each exam. Until she hits stage 3, we can't do anything yet.

Although we got that bad news yesterday, we got good news at weigh in. Our little pumpkin now weighs in at 2lbs 14 ozs., or 1310 grams.  2 more oz's to go..They changed her feeds again yesterday which was quick but ok. She now gets feed for one hour and then she is off for 2 hours. She was at 32 cc's each hour but with the PDA the doctor felt that , that might be too much fluid at one time so to proceed with a little caution she bumped her down to 25cc's each hour. So far so good. Her belly is looking a little more full which we handle that with caution, but I knew she pooped this morning when i left so hopefully that took some of the pressure off of her belly.. She was too cute this morning as she is each morning but she also advance to the "purple" pacifier. They have 3 types, clear, purple, and green.  The clear one is tiny.. Its like preemie like. The purple one is is a little bit bigger and has more of a round sucking point. I think she liked it because it also gave her something to hold on to and boy did she. Even when she wasn't sucking on it, she had it in her hand and didnt want to let go. The green one is bigger and is like the more normal size you see. One day..  But we are happy she likes the pacifier though as it is teaching her how to suck and breathe at the same time. Something she has to do to maintain the bottle which we are hoping here soon to try at least by next week.

So although we techincially have two hurdles to overcome, the ROP and the bottle, we are just going to face it like we have been, one hour at a time..

Sunday, September 25, 2011

Yaaay for Sundays...

I'm so sorry to all my readers for being so delayed on the updates, i guess it's a little different these days on changes as right now we just wait and watch her grow.. The doctors dont change much right now compared to giving her a few days to process the changes they do make.  And currently during the week since i'm back at work, the 4-5 hours of sleep i get each night allows me to to see her before work, work, then see her right after work until it's time for me to get home and get prepared to do it all over again the next day....

I love sundays because although I talk to Alexis on a daily basis and I know she is always with me, it's just a different feeling actually going and visiting her grave and talking to her there and taking her flowers and what not. Being in church where we gave her a celebration farewell although it sadden my heart, I always can feel her sitting right next to me in the pew. I have always been a person of signs but I've never been a person of believing signs after death. But I have to say that I'm eating my own words and my own beliefs.  Some sundays the presense of Alexis are strongers and others not so much. But needless to say, today was a strong day.  When i get out of the car, immediately i start talking to her and say hello and tell her how we have to go and listen to Pastor Hayes and afterwards we can't wait to come and see her.. Scott and I always sit in the same spot in church and we are nomrally there early.  So out of all the pews in the church, it's kind of strange that of course beside us, a set of TWIN boys always manage to make their way to sit next to us.  I know my church knows about us, but not everyone has actually met us so I'm  not quite sure if they realize we are "that" couple ya know. My second sign which I know i've blogged about this before but it's just the craziest thing, and that's the breeze. Today we put up a flag at Alexis' s grave that said "thank heaven for little girls", we have the same exact flag at our house now as well for both girls. Well there are a few other flags out at the  sites as well, but yet Alexis's was the only one that was blowing like crazy. Her's was the only one that seemed to be affected by the wind and it just kept blowing the entire time until we said goodbye. I love all the signs Alexis gives me and I hope they never ever ever go away..

Not only does Alexis give me signs on Sunday's to let me know she is there for me, but she always gives me signs with Mackenize to let me know she is with Mackenzie. Today they reduced Mackenzie oxygen flow to 1.5 and she had been on room air with pretty much all day.  They also changed her feeds tonight to where she will get feed 32 cc's for two hours and then take a hour break. Before today she was on 11ccs per hour for 6 hours and then got a 2 hour break. They are transitiong her to hopefully start bottle feeds and be able to maintain a good bit of milk at one time.. We were  hoping we would have reached the 3lb mark before the weekend was out, but we maintained 2lbs and 13 ozs the past few days but we will take it because as long as she isn't losing that's all that matters. But we are pleased to announce that she gained another inch though in length. Mackenzie is now 15 `1/4 inch long.. She is so going to be her daddy's little mini me. For those who haven't met us in person yet, i'm only 4'11 1/2 and Scott is 6'1.. :0) Tomorrow she gets another eye exam to see where we are at now with ROP, so crossing my fingers and toes for good results and also hoping it's a good day for her overall as the eye exams are not fun..
Today was not only "measurement" day for Mackenzie, but today I also had my very first true mommy skill test.. It's been 8 weeks and 1 day since my diva's came into this world and although I know i gave birth and I'v been with them everyday since, it's been more the motion of being a mommy but today i truly got to be a mommy. Today was the first day we got to hear Mackenzie actually cry cry.. She has had her little sound cries, but today she cried. Its apparent that we know she isn't going to like diaper changes but I will take that. She can cry for as long as she wants to wheenver she wants to..  After her diaper change, i got to kangaroo her, well she was still a little unhappy for getting messed with so she cried while I was holding her. The nurse handed me her pacifier, and I gave it to her and held it for her and just rocked away. She layed cradled in my arms and was just as content as she could be. She just looked up at me and was just as peaceful as she could be. After 8 long weeks, i finally had the chance to be able to soothe my baby girl as her mommy and not with meds and not with tubes and not with her bedding, but it was just me and her and the rocking chair skin to skin.. I look forward to many more priceless moments like today even if it's in the middle of the night, sleep or no sleep...

Tuesday, September 20, 2011

Blogging is my conversation..

I orginally started this blog to keep me up at night when I would stay with the girls at night in the NICU. All the nurses told me how they loved that the NICU moms would blog because that way it would be a good way for them to keep up with them once  the baby left the NICU.
Now since we lost Alexis, I find myself blogging to commuincate with the world and having a full conversation without so many tears. I use to be a very people person. I always loved talking, even in high school i got "most talktative" in our Senior Superlative. Nowadays, I just can't do it. I find myself avoiding people and places who followed me during our pregnancy but now might have not heard of everything that has happend. So if it seems like i'm avoiding you in public, really and truly I am right now because I just want to talk about things.  I dont like crying in public and it's just hard.   If i could avoid work for a while I would, but as all my customers call, I relive everything with each phone call.  I love sharing in the joys and strides of Mackenzie but it also hurts in the same breath because I miss Alexis. I'm amazed how scary the NICU can be but in the same token I feel like it's my safe haven. They have been on this difficult journey with me, and in the NICU most times I feel normal. In the outside world, there is not a day that has gone by that I havne't cried in some sort of capacity. It's been such a combination of emotions from saddness,joy, compassion that i dont know if i'm going up or down. I've never had to grieve before so i'm not sure how or when, i just take each moment for what it is..
I also love blogging to you guys to record all of Mackenzies milestones. This is like my mini diary that I hope to be able to share with her when she gets older. I know i haven't been blogging everyday like I use to but it's just kind of different now as she progresses there are not as big of hurdles to cross quite yet.  They are just letting her do her thing and we see how each day goes. She had another eye exam yesterday. I'm sad to report that she now has Stage 2 ROP. Right now she will get a exam every monday and I'm praying and crossing my fingers it doesn't get worse.  I'm really hoping that it will self correct on it's own because I really can't handle my little pumpkin going in for surgery and being put back on the ventilator if she does have to get surgery. It breaks my heart now just knoiwing she will get a exam each monday as I know she does not like them and they hurt her eye. But I find comfort knowing that she loves mommy time and I can tell it brings her a little peace when i get to hold her on her exams days.  Actually I get to kangaroo almost everyday now but when she has a rough day i try to do it the whole time i'm there regardless because thats the only thing i can do to make her feel better. When daddy gets her, she loves for him to sing to her. That is such an amazing thing to watch. So far her favorite song is Marry Me by Train..
Mackenzie is now up to 10ccs of feed every hour. We are proud to say that she now weighs in at 2lbs 11 ozs. She also grew another 1/4 in. so she is now at 14 1/2 in. Her bowel movements have been really good but i wont got into to much details although it's quite humerous even when it's all over her bed and all over all our hands. She will be 34 gestational weeks next week and we are hoping that she will be able to be ready to give the bottle a try. As long as everything stays steady then we can give a try and she will have to suck, swallow, and breathe in order to stay on the bottle and get off the feeding tube.  Its hard to know that we are coming up on 8 weeks in the NICU.

Mackenzie wanted to tell everyone "I love you" for all the support and generosity from near and far to all those who have met her and to those who haven't but still love her the same. Thank you.

Friday, September 16, 2011

One Month..

Today marks one month since we lost our precious Alexis.  This morning when i got to the hospital it was so hard walking through the doors more so even walking out. I go in the mornings by myself to get some time in since i'm back to work so to walk out all alone, I didnt know if I could do it. On this day a month ago, I had to walk out the same double NICU doors, down the same hallway, across the same crosswalk, all knowing that this day marked the last day I held Alexis and the day I had to say goodbye to her physically for the last time. It was the last day that Scott and I would see our sweet Alexis as we couldn't see her in her casket. We wanted the memory of her in our arms with no tubes or anything, just her as peaceful as the angel she is and was. It doesn't seem like it has been a month already as it still just feels like yesterday for me. I know that Alexis continues to give alll of us strength and she continues to keep pushing her sister but I am still sooo scared that she is going to call her sister to be with her but  I really keep hoping that she hears me when I tell her I need Mackenzie to come home with me soon and if she can please make that happen.
So far I think she hears me and is making it happen. Mackenize continues to push through each day and each day is a new beginning. She had her eye exam yesterday and the eye doctor said that she has Stage 1 ROP (Retionopahty of Prematurity) pretty much from my understanding it's where the retina blood vessels are not devolpoing properly. We were told not to worry right now so I'm trying not to google too much to freak myself out more.  They said we should not worry until stage 3. Right now stage 1 can correct itself overtime to where there is no long term damage or surgery involved but  it's all up to Mackenzie. They are going to continue to do weekly eye exams on her until they can see what direction she heads into. She has another one on Monday and we hope they will be able to tell us more. They said it is common in premature babies and it's just another waiting game. Since her eye exam she has been pretty restless as they had to dialate her eyes and her eyes are a little bruised and sore right now. So it brings me a little comfort as a mommy that when i hold her, you can tell she is a lot more at ease.
The girls turn 32 weeks gestational today so as Mackenzie contiues to reach gestational age we attempt new hurdles. We are proud to report that she is gaining more weight. She is now up to 2 lbs 7 oz. She has gained 2 ozs in just 2 days. They have upped her feeds again to 9.5 cc's.. I hope to see her a little chunky butt before we know it. She is still on 2.5 liters of oxgyen flow. They are considering reducing it again in a few days because she has been doing so well.  The nurses were telling me that at 34 weeks we can hopefully try to start trying her on a bottle. Which i hope to make happen as the little stinker is still continuing to pull out her feeding tube. I guess she is trying to speed up the process as well. The doctors still do their rounds but it's different for us now because now we dont see them as much.  Since she has been doing so good they just pop in and out and we dont see them unless we ask. In a way i guess that's a good thing but we got so use to seeing them everyday it's just different now that we dont have to see them everyday.

Dear alexis-
Thank you for being our angel and continuing to be your sisters angel. You are pushing to get us through all of this. We love and miss you dearly. As the days go by and a month turns into a year and a year turns into 10 more, you will ALWAYS be in my heart just the same.  Love forever and always, mommy..

Wednesday, September 14, 2011

Mackenzie is such a little stinker..

Boy oh boy is our little pumpkin a stinker. Scott and I try to kangaroo her for a hour each day and yesterday was my turn. We now alternate  days as they say it's better to hold her for a complete straight hour instead of interupting a hour of holding her. Well my little stinker decided that it was time to give mommy a suprise and boy did she.. I had to change her right then and there in my lap as we couldn't leave her like that for a hour.. We are so glad to hear that the breastmilk is taking to her real well and that she is having some good poops with it. Scott called in to check in on her today and the nurse said that she had another one and while she went in to chnage her, she found out real quick that she still wasn't done. I guess she has now branched out and decided to not only do that to her daddy but now share with her nurses.
She had lost 20 grams on monday over the weekend but we are glad to report that she has finally gained those grams back and she is now up to 2lbs 5 ozs. We hope to see some weight gain tonight. She is slowly working her way up there.  She is currently on 2.5 liters of oxygen flow and seems to be mainitaing it well. She hasn't has much swings lately except when she decides she wants to pull out her tubes.  She is constantly keep her nurses and rt busy because when she is not pulling out her feeding tube, she is pulling out her nasal cannula. We even got her some mittens and she is still mangaing to wiggle out her tubes.. It was too funny today as I got a picture and they have now resorted to trying to use longer pieces of tape to keep her tubes in, i haven't gotten my afternoon report yet to see if it worked but we will see.  I dont think it did knowing her.
Our little pumpkin peacefully sleeping looking all innocent. But you can see how big pieces of tape they now needed to put on her to keep her tubes in and from her pulling them out.

I know we have not been posting that many pictures lately as we know people are enjoying them but please know its not that we are not meaning too but after Alexis passed it's been a little hard for us. All picures we have taken have been truly sacraid to us and we have had a lot of emotions sharing the pictures. We are being very protective right now. It's just kind of a hard feeling to try to explain but we are slowly coming around.  I've been reading other peoples blogs who have lost a child and I see how they still post pictures as all the pictures tell a story. And i know my girls have touched so many and I plan to keep that going. Its just going to take mea  little bit of time so just please bare with. 

Tuesday, September 13, 2011

I not only lost Alexis..

Since Alexis has passed almost a month ago this Friday, i have been unable to look at my c-section scar. It doesn't hurt in the sense I had to get cut open internally and externally but it hurts more so because it's a constant reminder of everything I had to go through just to get Alexis and Mackenzie here only for Alexis  to be taken away from me in just 2 weeks and 3 days. I will never understand why but that doesn't mean I wont ever stop asking.  I will never ever forget everything I went through and the joy I had for when my girls came into this world but I can't help but to think of the pain of it all and just wish it could all go away but I know deep down it never will.
Giving birth at only 25 weeks and 1 days is so hard for me as a first time mom. I fear more now than I ever have and I lost more than I ever imagined.
When you have to deal with infertility and dont know why you are, you already start off with such defeat. I never knew what I was up against so I didnt know how to fight the unknown. But when we became pregnant finally, I felt like i could conquer the world because we conquered the unknown of our infertility. And not only did we conquer it with one baby but we were blessed with 2.
I finally got to be a first time mom when during the whole infertility process I was never 100% sure that I would ever get to have that feeling of being a "first time mom".  But going into preterm labor at 25 weeks and 1 day, it not only took Alexis away it took so much more away from me.
I fear getting pregnant again only to go through so much pain of something else going wrong. I fear each day that I wake up, i'm going to get another phone call again and just like that everything changes in the blink of a eye. I fear the hurt and saddness will never go away nor will it get easier. Heck i'm even to the point where I"m waking up in the middle of the 4 hours of sleep i'm getting just to make sure Scott is still breathing.  I will never get to experience all the oohs and ahhs when you have a baby shower and you get all the big stuff and the stress of where to put it all. We had a smaller shower before Alexis passed with just a close knit of friends and I was elated only for it to turn to saddness as looked at all the double stuff that I wasn't going to be able to use. Although we had both their cribs already, I was unable to go into the "babies" room becuase of both cribs. Luckly my best friend was having a baby and needed a crib and came and removed the other one while we were out. The day of my big big shower, that was the day we buried Alexis. Instead of friends and family gathering together for oos and ahhs, we gathered for tears, saddness and heartbreak. As the date approaches this weekend that was suppose to be another shower for me, I will be spending  it with Mackenzie in the NICU thinking about how the few things that I do have for her, I wont be able to share with her quite yet and I dont know when I will.  I will never be able to have that 3rd trimester feeling and all the "glory" you hear about that. I will never be able to say I had a "maternity photoshoot" as it was already scheduled for the week after the girls made their early arrival. Ill never be able to have these first as most new moms get.
Although now my first are when i get to hold my baby girl, when will i get to feed my baby girl, when will she get to come home, when she overcomes a hurdle that the doctors give her. And yes, these are a different version of all my "first" and i'm elated over each one of them but still doesn't mean that a little part of me is missing and doesn't get sad when I see other new moms and all their joys.  My friends keep telling me they are going to have me a shower after Mackenzie gets home but i tell them no. Its hard looking at my registry knowing that we did it for our TWIN girls and now to redo everything, it's just too much. On top of that, everyone has offered so much generoisty with donations, food etc,  we dont want to obligate people to gifts either.
As their parents, we feel like we failed in protecting them from so much pain and hurt. And for me, I think that's why i'm so determined that whatever Mackenize needs, I will figure out a way for Scott and I to get cause right now that is the only thing we can do. The rest is up to her, her doctors, and GOD.  And i know everyone means well and wants to help with us getting what we need, but I feel like it's something we have to do on our own. We are the parents and it's just what parents are suppose to do. We got Mackenzie her stroller and carseat this past weekend  in prepration when it comes time for the carset "test".. I dont know when it is but i will be ready and waiting in anticipation. And for those who dont know, the carset test is where before she leaves the NICU she has to be able to sit in a carset i think its for over a hour without any heartrate drops or breathing issues before she can come home and she also has to get to the weight requirements of 4.5 pounds.
If i could just have one wish or if I had to give everything up, I would do it in a heartbeat if i knew that Scott and I could have BOTH our girls home and healthy...

Monday, September 12, 2011

Just a quick afternoon post..

Today is my first day back to work in 6 weeks. This is the only other place that I've spent this much time in outside of the NICU. (heck i dont even stay long at my own house). I woke up at 3 to pump and just couldn't go back to sleep so needless to day i got ready to go to the hospital and Scott was not happy about that. I love that he cares so much and pushes me to sleep but he knows once i get it in my head, there is no stopping me. My NICU family couldn't believe that i was up there by 5 but i want to spend as much time as i can with her since i had to come back to work.
I always said that when my child grows up and goes to their first day of school, I wasn't going to be that parent that cried. I felt like that parent today leaving their child behind for their first day of school adn needless to say when i got to the car, i cried and i've cried 2 other times at work as well.
She was so peaceful this morning. She had a good night and from what Scott has told me, she is having a good day. She has reflux now but they said that is common even with preemies and since she is now up to 9 cc's a hour, which is a decent amount for her, they are just going to let the reflux run it's course.  Scott got to have daddy time with her today and he said she did really well. He also gave me the good news that the reduced her oxgyen flow from 3 to 2 which is awesome.. I cant' wait to get back up there and get mommy time with her... Oh and we have had poop so things are looking up for now..

Saturday, September 10, 2011

Band of Brotherhood and Family....

Growing up in a asian family and only a family of 4 and not around any military/law enforcement influence, i never saw or truly comprehended the meaning of camaraderie. Nor were we use to having such a large family. Our friends made up both our extended famiily as we grew up.  But now since Scott has been with the Lexington County Sheriff's Dept. for four years now and being on the SWAT team, our law enforcement family has truly defined the meaning of camaraderie and has proven that you dont have to be blood related to be family.  The Law Enforcement Family not only looks out for the communities but they also look out for their own and we are so glad to be a part of such a big family.
The department/SWAT brothers have offered so much support.  It's not just a place that Scott works at, it is truly a home. The entire departement has offered so much support and has band together with so much generoisty and so much love. Even ones that Scott doesn't work that closely with as some other but to the department that isn't a issue, they all stand as one. They have also worked it out to where Scott is going to be transferred back closer to the region near the house as I still can't handle being alone very long by myself and if something else was to go wrong he is closer to hospital as well. To top off such support of family, when Alexis passed, Sheriff Metts attended her funeral to pay his respects as he has kept up with our pregnancy every time he saw us. I mean, who works for a company that employes 300-400 people and can really say that their boss will attend the loss of a love one? not that many..
Our SWAT brothers are such true brothers and I know Mackenzie is going to have a very hard time when it comes to her first date night. They love us like no other. When Alexis passed, every single one of them came to her visitation and/or funeral. A few were there on her final days to show support, they all wanted to be there but there was no way we could get them all in the NICU and because all of it just happened so fast, not all of them had a chance to meet her. I could see in their face that our hurt was hurting them also cause they have so much love for us. Even our SWAT brothers in Beaufort County graced us with such generosity without ever meeting me and only meeting Scott I think once.
Scott is also in a law enforcement motorcylce club called the Blue Irons and they are all over.  They have show such support. The New York chapter- thank you very much for your donation in memory of our daughter to the NICU, part of the georgia chapter drove up for Alexis's funeral, food was sent from one of the Illonois brother (sorry if i get the state wrong, i'm going by memory), other chapters have sent cards and we haven't met any of these other chapters yet. 
Our band of closest friends has given us all the love that they have always given and you guys know who you are that are reading this.  Although they know how much pride i have and how not receptive I am with them working behind the scenes they finally said no to me and have gone so way above and beyond.
To all you guys- THANK YOU FROM ALL OF US..

I wasn't sure if i wanted to blog about this because i have a lot of pride and they kept me in the dark as they knew i wouldn't be as receptive, but I felt that the Department, Our SWAT Brothers, and our band of Friends put so much work into this and I have apparently gained so many readers with my blog i wanted to share.  And this is not something that we wanted as I have too much pride and I feel that just because everything has happened to us, it doesn't make me any different from anyone else  but they all band together and helped the only way they knew how since we wouldn't give them any other options on how to help. They have all put together a fundraiser for us to help with medical/funeral cost. Please see flyer below. Also what is not included in this flyer as there is apparently another flyer just from the SWAT guys, they are doing some sort of push up/sit up.. some sort of manly thing to raise money also the same day. (i think it's like you know those things that you pay for however many miles you can walk, or how long you jump rope-that sort of thing)

I'm telling you, the universe is against me..

Our little pumpkin didnt seem like she was having a good night after she got the broviax catherer out  but we thought that maybe she was just a little annoyed with everyone messing with her. She continued to swing a good bit last night when the doctor came in  so they ordered some blood work because doctor said that sometimes when the central line gets taken out there could be a little bacteria at the end of the tube that can then disburse into the blood system when taken out which will cause an infection. So far the blood work came back negative but Mackenzie just did not have a good day today. She got a little pale last night so that is normally a sign that she needs more blood so needless to say, she got a blood transfusion today. Which kind of made me sad because they had to stick her today to put a iv in  (which was just sucky cause they took out the central line just last night) but then again I would rather them have to give her blood and that be the fix than there being an infection.  The blood transfusion normally does the trick but this time around it seems like it took a little bit longer.. When her night nurse came in, she noticed her tummy was looking a little full/swollen which is always a concern to Scott and I as that is a sign of NEC, which is what Alexis had and caused us to lose her. But they think that she is just getting too much air in her belly and that she needs to poop so once again we are waiting for poop and she also got another tube put into today to help vent soem of the air from her belly.
She didnt gain any weight tonight as she actually lost. She went down 20 grams which made her now 2 lbs 4 ozs but it's ok as we figured she would have after all her blow outs just the day before. She has been on her tummy since we got here tonight so that seems like it is helping relieving some of the her belly pressure. She hasn't dropped too much since we have gotten back so that is a good sign. Dr. Yajink just made her rounds for the night and her tummy is going down a little bit. She doesn't see a cause for concern yet. She also said that they might reduce her oxgen flow from a 3 to a 2 which is a semi good thing. They said that if she doesnt  have too many more swings tonight then they are going to try it cause she is only really low pressure anyways so they they her being at a 3 could be the cause of the extra air pressure.  So we will see how tonight goes..

Friday, September 9, 2011

Her running shoes are smoking..

Mackenize must have her running shoes on because she is taking things in miles and not baby steps.. Although tonight she did not gain any weight we are happy to say that last night she gained over 60 grams in one night.. She is now 2 lbs 5 oz. She stayed right at that same weight tonight which is amazing cause she had lots of poopy diapers.  They also took out the broviax cather tonight (the central iv line). She is on full feeds now staying at 8.7 cc's of breast milk. We had to put some mittens on her today as she keeps managing to pull out of her feeding tube. Yeah needless today that didnt completly work but it helped a little bit.. She still manage to pull it out with the mittens. The only thing that we know now that she has coming up which might happen next week or the week after is that she will get a eye exam. Yeah mommy wont be here to witness that because everyone is telling me it's not something I want to see. Although it is not painful for her, it's not a pretty sight to watch them do from my understanding. Heck mommy can't even handle with they move her with all tubes and all let alone watch them do something with her eyes.

I dont think i will ever be able to stop talking about our NICU "family" enough..We love them so much and they love our Mackenzie just like their own.  As Mackenize continues to keep jumping all her hurdles it is amazing to see how many of the her nurses who might not have been here in a few days as they have different shifts as well, they all come in and check to see her progress. To listen to all of them point out all her changes and how they can't believe she has progressed the way she is, it really shows how attentive and caring they really are for her. They will even call just to check in on her if they aren't coming in for a few days. It is going to be so bittersweet when we finally jailbreak from the NICU..

Thursday, September 8, 2011

Its so surreal..

Last night visiting Mackenzie, regardless of how much I stare at her, I can't help but look at her and still can't believe that she is mine..Every second of every day that I see her, you can see her growing and her personality is getting stronger and stronger each day.  With being on the nasal cannula you can see more of her face now and she only has her feeding tube in her mouth so she smiles more now, she makes more noises (still haven't heard a official cry but i can't wait for that) she yawns, she sneezes, she chews on her tube, and here and there she will suck on her pacifier. She is able to gain a little more of her eye control so now she is opening both eyes and focusing a little better, which it will never get old when i walk into the room and start talking she will open her eyes and look up at us. Its hard to explain the feeling  but when you have a micro preemie, you dont get to see a lof of their face becuase of all the tubes and everything for the first few weeks or months so when your baby is able to start looking at you and smiling, it's just such a undescribable feeling.

As of last night, Mackenzie is still staying steady at 2 lbs 3ozs. they have upped her feedings to 7.2 ccs a hour right now. She will be at full feeds at 8 ccs which should be by tomorrow morning. They have stopped her sugar protein iv and she is now on a clear iv which will all go away by tomorrow morning hopefully.. She is still having good bowel movements. She is still being a little diva as she is still pulling out her tubes.. She managed to pull her feeding tube out 2 times last night and she is so cute cause if you catch her right when she grips it, she will kind of give youa little smirk or she swaps at your hand when you go in to move her. Needless to say, she kept me on my toes last nigth when we were visiting.. So today i get to go and look for her some little preemie socks/mitten to put on her hand and hope that helps. They had her trying to hold her pacifier this morning to keep her hands busy with something else. We will see how that goes.

I got to go and see one of the other babies in the NICU last night. Now that we have changed rooms since Alexis's passing (I am uanble to go back into their original room and still not able to go pass the nurses station just because its' just too hard) we are now at the front of the NICU hallway and have meet more of the other parents. So one of the parents wanted me to go and see her son,  and he just hit the 4 pound mark yesterday. I looked at him and just couldn't believe how big he looked. I can't wait for Mackenzie to reach 4 pounds but it was so surreal looking at that baby boy and trying to imagine Mackenzie getting that big.. She is just such a little squirt right now, I can't picture her any bigger. I am so over the hill to see Mackenzie thrive the way she is but it is also causing me to have more aniexty because it's just all been so quick.. To me it's like, it's too good to be true considering everything we have been through in the past 6 weeks. I know my little pumpkin will be home soon but I just can't help feel that the universe is against me. I think i will have that feeling for quite a while because as talking to some of the nurses as well, it's still not over when she comes home.  They say she will come home during the worst time which is winter time where there is the flu virus etc, lets just say that she will be put in my own little bubble when she comes home. And fair warning to all and to not offend, but vistors will be highly restricted for a bit due to building up her immune and all. They told us to stay away from malls etc, anything with big crowds, little kids, so i'm so going to be that parent that is just too overly cautious.
Every moment to every second of our girls life has just been so surreal for me to grasp, i can't imagine how more surreal it will be when I do get Mackenzie home..

Tuesday, September 6, 2011

So now we wait..

Everyone knows that i'm not really a patience person so waiting for my little diva's to arrive seem like it took forever..Well now waiting for little Mackenzie to gain wait seems like i'm even on more pins and needle. We are glad to report that as of right now, Mackenzie is doing super great. She is now still on the nasal cannula, her iv fluids are getting reduced as her feedings are increasing. They say she should be on full feeds (which is nothing but breastmilk, no extra iv fluid or anything) within the next day or so. She does not have to get any more xrays right now or get pricked every day to check her blood gases. They said until she starts showing signs of distress then they are just going to let her be. She is no longer on any antibotics.
So as of right now, we just have to wait for her to keep gaining weight. That's our next step. so far so good as she now weighs in at 2 lbs and 3 oz. We need her to get to at least 4 lbs before they will consider taking her out of the "bubble" and putting her into a crib (it's just the same as a bubble, but it has no top) but in order to stay int he "crib" she will have to be able to maintain the proper body temp and she will have to master bottle feeding while maintaining her temp.
So keep praying and crossing your fingers that Mackenzie keeps progressing and nothing else arises as each day passes and it's one day closer to her coming home.

It was too funny today, that when Scott went in to change her pamper, she decided she wanted to have a blow out. And then as soon as daddy wiped, she decided she wasn't done..hehehe.. and she wasn't done about 4 other times.. So excited for more poop.. I'm telling you, daddy is poopy king as she has had a few blow outs today with daddy. We also go to kangaroo again today. We also found out that apparently we should be kangarooing for at least a hour as that is better for her. Scott and I have been switching so that both of us can do it but now we are going to do split shifts between morning and night so that way we can still both hold her and her get that comfort.. That was exciting to hear but the rocking chair in the rooms are not very comfortable though let me tell you, but i will bare any pain just to hold my little diva.
I also had my 6 week post partum check up today and I got the clear on everything. Doc said that everything is looking great and I'm healing really well. He knows as well as i know that I'm not emotionally healed but he brought me some peace as he told me it was ok, i'm grieving. He told me to grieve as long as i need to. He said that it's going to take a while.  It's not depression, its a sign of me grieving as well I should be considering all that i have gone through. He made me feel that it was more so grieving and not the depression. I dont know what to make of it. Ive never experienced either but whatever it is, it hurts. It hurts all the time even though I might not show how much it hurts,  I gotta keep going for Mackenzie. I guess as I wait for Mackenzie to gain weight, I wait also for the hurt to not hurt so much...

Sunday, September 4, 2011

Off to the races Mackenzie goes..

I'm telling you, it's something about Sundays but I think Alexis gives us a extra reward each Sunday.. We love going and seeing Alexis each sunday, we showed her pictures of Mackenzie and how she is coming along, we told her how we hate right now we dont get to see her that much but once we get Mackenzie home, we will be a lot more often, even with Mackenzie. And boy let me tell you, i think she is helping speed up that process. Alexis knows mommy and daddy love and miss her so much but she knows we gotta get Mackenzie better and home.
To our happy surprise this morning, we get a Good morning text from our nurse Tonya who is so awesome and captures all these awesome moments that we arent able to be there for but she sent us a picture of our little pumpkin and scott and i both looked at each other and you would have thought we were about to fall out of the bed. Our little pumpkin made it to a nasal cannula. Pretty much its a smaller machine but she is breathing even more on her own right now. (it's looks just like, ya know how when you need oxygen and you get the nose prongs, that's what she is on) The prongs fit her so much better than anything else and you can see so much of her face now. So far she has done so well on it, she has been on room air majority of the day. Since we got Tonya and Becky, RT, of course we got to kangaroo today.. It was so much easier holding her with not so much tubing to have to worry about. We didnt get to hold her very long though but we still got a little skin on skin contact.
Kangarooingon the nasal cannula..

Our little pumpkin actually lost 2 ozs but it's ok because she had 4 poopy diapers.. Which is so what we wanted and needed so it is a good sign that she is blowing it up. hehehe.. But as you know also, Sunday is also measurement days so our little pumpkin grew a big 1 1/4 inch.. She is now  14 1/4 inch.  She is also up to 4.5 cc's of food a hour and in the morning she is going up again on feedings. Meredith is our nurse tonight and she said as long as her food continues to go up then her iv fluids will also start to decrease. They also stopped the humidty in her bed which is just another step up.. Her skin is getting so much better so she is no longer needing the humidty..
Our pumpkin letting us know she is getting too big for her bed..

Alexis- thank you for taking care of all of us. You are getting us all stronger and getting us through each minute of each day. We love and miss you dearly.. Love- mommy, daddy and your big sister Mackenzie. 

Saturday, September 3, 2011

3 Days and Counting..

Today marks the 3rd day our little Mackenzie has been on the cpap machine. this is a huge thing as the last time she only lasted 24 hours.. She has been doing so well on it. she has been on the lowest settings possible for it and her stats have been really good with very very mininmal drops. The cpap machine has little nose prongs instead of having to put a tube down her mouth like the ventilator. It's less envasive but it makes it still a little hard to hold her but if there is a will then there is a way.. I tried yesterday but Mackenzie has become such a wiggler that she kept wiggling  her prongs out of her nose.. But then last night, Mike her RT gave us a new way to hold her, although it wasn't kangaroo, we still figured out another way to hold her and worked around her cpap tubes.. wahoo.. but today we got Becky as her RT and we got to kangaroo for over a hour today. She did so good.. It was a little more difficult but it worked out and she just did so well..
Kanagrooing with the cpap.. wahoo..

Also in the past three days we are so please to announced that our little pumpkin put on some weight.. Last night she weighed in at 2 lbs and tonight we are so estastic to report that she gained 2 more ozs. So she is currently at 2lbs 2ozs, or 950 grams. She has gained 80 grams in two nights.. so super excited.. They are slowly reducing her iv fluids to where hopefully she will be on nothing but breastmilk. She still isn't doing to well on her bowel movements but hey they can fix that when need be. :0) Her feedings have been upped every hour. She is at 3.6 cc's every hour which currently she is getting feed 6 hours out of a 8 hour time frame..
Although Alexis has left us physically, she is so with us in spirits through Mackenzie. Before Alexis passed, Mackenzie was always the one that didnt thrive as well as Alexis, but now you know Alexis has passed on her everything to Mackenzie as Mackenzie has just been thriving since Alexis has become our angel..

Thursday, September 1, 2011

Baby steps...

I guess our little girls love teaching me life lessons in each passing day. But then again, sometimes also, i think they just keep sending me reminders.. Last night when we meet with Dr. Bendeck to discuss how Mackenzie is doing, he said that she was still stable and that there is still the issue of the PDA, but that a xray was ordered for this morning and we will see where we needed to go from there. The xray was too look at her lungs and her heart to see how the PDA is still affecting both areas. But also he wanted to up her "caffine" that she was getting kind of hinting that she might be able to go back on the cpap depending on how her xray looked. She stayed on still low levels last night and did really well. So when we called for our morning update, we found out that she is still about the same as she was a week ago with the PDA so there is no move for surgery yet. Dr. Coates said that it was ok to wait and just keep seeing how she is doing but also she got to make it back on the cpap today.. wahoo.. So far she has been doing really good.. She has not had any heart rate drops or any saturation drops.. There was even one time when we came back from lunch to where she managed to pull her nose thingy out and she was breathing on her own without any drops.. not sure how long she was like that but that was a good sign that she was able to do it for at least a tiny bit.  But not only did her going on the cpap make my day, today i also got to see her suck on a pacifier. She actually took to it and it was just the cutest thing ever. I never thought she would be able to have a pacifier while she still had a feeding tube in her mouth as well but she was mastering it.. I also got to hear her sneeze and she made her duck noises only once today but just to hear my sweet baby and to see her with a pacifier just melted me as her mommy.. She is taking it baby steps at a time and I think it's time for mommy to do the same.
I go back to work in another week or so but dont know yet if i'm going to be strong enough to last. Right now i keep telling myself that I can do it but then I remind myself that really and truly I have not faced the outside world outside the halls of the NICU. Literally my whole days are spent in the NICU just sitting with Mackenzie. The only stops outside of the NICU was to take care of everything for Alexis and go to church which I still wasn't successful at those trips. I think my fear is that I have to go back to the world who was so happy for us for 1)that i finally got pregnant and shared in so much joy with me and then 2) at the fact that we were having twins. Now i have to go and face that same world with our angel in heaven and our diva in the NICU. I couldn't even face the pharmacist at the Publix's we go to without breaking down because she has been on our pregnancy journey from day one with us or even face our neighbor yet across the street who was going to be "grandpa brady" to them both. Scott reminds me that regardless tomorrow is going to come and I'm gonna have to face it. He tells me it's going to be hard but we are also going to get thru it. The pain is never going to go away but it will at some point at least get managable. But as Mackenzie makes her baby steps to getting bigger, stronger, and healthier, I need to do the same of getting back to the world and getting the world ready for a mini me. :0)