Tuesday, December 6, 2011

The Past 4 months..

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 tlab99@yahoo.com

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