Everyone always has said that all you need is love to bring your baby home and all that other stuff can wait. I really wish that was the case in our suitation. Love couldn't stop our little Alexis from being an angel and love hasn't gotten our little pumpkin out of the NICU yet. But I will say that love has been what has kept Scott and I going. The love we have for each other, the love for our girls , the love for the team of people who cared for Alexis and who still continue to care for Mackenzie and for all the people who have been our support through all of this.
Mackenzie still weighs in at 3 lbs 4 ozs. She only gained 10 grams last night but that's ok. She got another shot at the bottle thismorning and she didnt seem to into it but took a few cc's down. Her eye exam yesterday, I guess you can say it went well. Dr. Clark said that the ROP didnt get worse and things look the same but in the same breathe that it looks a little bit better. He is now hopeful that she might actually regress so she has another exam on thursday. She will have 2 exams a week until her eyes decided what direction they want to go in.. I hate she has to go through that but I know it's for the best. She now also had another ultrasound today to now check her liver as her blood count for whatever they test on the liver was a little down so they want to make sure that it's not enlarged or that there isn't a issue now with her liver.
As days go by and as Mackenzie continues to progress and jump her hurdles, it's beginning to hit Scott and I that she is one day closer to coming home real soon. We have yerned for that since they were born and now that it's becoming more of a reality and not just something still in the long distance, boy ole boy am I scared. It just hit me last night. I realized for the past 9 weeks and 3 days, my life has been the NICU. The only times i have really been able to see friends is when they would visit at the hospital and then just at Alexis's funeral but I do know i have neglected so many and I apologize for that but my world changed completely when I got wheeled through the doors at Baptist. I've made the NICU my life because that is what feels normal to me, that is what I have known for and with my girls for the past 9 weeks. The NICU is the last place where BOTH of my girls were with me. I know the monitors, the beeps, the dings, the supplies, the meds, the diaper changes through all Mackenzie's wires. I know how to only give her a bath with little wash clothes that i get to use to rub her down in her bubble. When she comes home, we have her crib, carseat, stroller. pack n play and highchair (it was a package deal that we couldn't pass considering we really need the car seat and stroller) Thats all that she truly needs for now, yeah we have a lot of knick kancks and clothes that people have given us but even majority of that, she can't use yet or wear...What am I to do with all we have.. . Her car seat and stroller still sit in the box. I dont know how to use any of that with her.. I just got use to feeling totally comfortable well 98.5% comfortable taking her in and out of her bubble without any help. Again the fear of it all has kept us from really buying everything/registering again. (For those who have looked, our registry got wiped out so that I didnt have to look at everything that we wanted for BOTH of our girls) I dont know if if i'm going to register again although certain people and you know who you are really want me too, but you guys can be proud, i did go and look on babies r us website so you know that was a big step. (gotta research the angel monitor now)
Hopefully we only have a month to go and I dont even know where to begin to prepare for her to come home. I got tunnel vision on what needs to be done for her to "graduate" the NICU but I haven't even really put thought into what she needs when she comes home. So in order for Mackenzie to "graduate" the NICU and come home these are our goals:
1) reach at least 4.5 lbs.
2)she has to be able to take 8 bottles in one day and all under 30 mins. (she gets fed every 3 hours)
3)she has to be able to maintain her body temperature
4)she has to be able to sit in a car seat for over a hour without any heartrate drops or oxygen drops
5)scott and i have to take a cpr class and watch a sids video
Yeah it's a short list and it sounds a lot easier, but if only they were as easy as it sounds. (well number 5 is not a problem, just hope we can get into a class before the month is out as they only offer at certain times) So hopefully as the days keep passing, we will be able to check part if not all of our goals off so we can create some "home" goals and not NICU goals..