Sunday, November 18, 2012

Living With Preemies, My Experience

(A day late but better later then never)

Today is November 17, 2012, World Prematurity Day. As a mother of two boys that were born early I have had plenty of experience with the world the revolves around NICU's and doctor appointments and worries and fears. I also though have a lot of experience with seeing miracles happen both from the stand point of my boys and from the other parents and babies that we shared the NICU time with. I could easily turn this post into a brag post about my boys (and there is a lot I could brag about) but this isnt about just them or us, its about the hundreds of thousands of babies that are born too early every year in just the USA and the millions that are born too early all around the world yearly. Yes I plan on talking about my journey with both of my boys but I want people to know that this isnt just a small issues that can be easily over looked, this is bigger then people want to admit to and well it needs to be admitted too and thrown out in public view for people to talk about and help fight against.  I hope deep down that the more I talk about what we went through the more it will help other parents that are or have been through it. I have listed a few of links at the bottom of the page that over the last year or so I have found very helpful although there are a lot of other links that I could add I dont want to have a list that goes on and on and on lol so actually if any of you have any links that you find helpful please feel free to post them in a comment. 

So I would like to go all the way back to 2008 and speak a little about my first experience with premature birth and everything that comes with it. The day that I had Dante is still a blur, it was such a whirlwind of things happening that even almost 4 years later I am still trying to piece together everything that happened that day and the days and weeks after. I remember going in for my 32nd week appointment and being hooked up to the monitor for a non stress test (NST) and not being able to have the machine pick up on any movement even after being given orange juice to drink. I remember even with being on blood pressure meds that my blood pressure was high (although when ever I go to a doctors office my bp shoots up). I remember being told to go check into L&D and having them monitor me and after 30 or so minutes being put into an actually room and having nurses coming in and out and no one telling us anything. One nurse finally said that doctor was coming to talk to us and that we would not be leaving. I kinda remember Dr Weeks coming in and saying that I would be a mother before the night was over (although I already considered myself a mom, I knew what he meant). I remember being given two option, inductions and risking my son and I not surviving it or a caesarean section (c-section) and getting him to the NICU asap and having a better chance of survival.  The more I think back on that the more I want to believe that they used my vulnerability against me, my youth and being uneducatedness against me and well fear against me to get me to ok a c-section so they could go home earlier and not have to deal with a laboring mom at 32 weeks gestation. I have yet to obtain a copy of my records but that is something I want to do for both my boys within the next 6 months to a year. Anyway...I remember calling my mom and saying they are taking him that night. I remember breaking down in the room waiting for my mom to get there and for them to prep me for surgery. My son was no were close to being full term, no where close to being ready for this world. After that I cant remember anything much other then being in the OR, cold from being numbed, hearing my son cry and Tim leaving my side to be with him. I realize that its probably my mind that is blocking most of the things that happen to save me from constantly reliving it all. I already know that I will probably always suffer depression, anxiety, panic and PTSD from everything that happened. That birth was no where near who I had planned or imagined it ever happened, I had planned a completely natural birth, I wanted to feel all the pain, all the power that a womens body has and I am being completely honest I feel that it was unfairly ripped away from me, that it was stolen from me. 
The next 24 hours was touch and go for Dante in the NICU and I couldnt be with him and Tim went home with his parents to get some rest and things that we needed to stay at the hospital. I didnt get to be with Dante for 24 hours and in that time I was taken back into the OR because they were unable to get me to stop bleeding. Dante was in a room with people that I didnt know all alone fighting to stay alive and I was fighting to not bleed out but I at least had my mom with me. I was scared for both of us. I remember the first time I saw Dante, it was just my mom and I and she made sure to get a photo of my holding him for the first time and for that I couldnt thank her enough. He spent the next few weeks fighting to stay with us, to get off the machines and be a strong little boy. I tried the best I could to pump breast milk for him but after a couple weeks I started not responding to the pump as well and was slowly losing my supple. I remember all of a sudden I no longer felt connected to my son, to Tim. I no longer wanted to leave the room at the Ronald McDonald House to go see my son, I was being thrusted into postpartum depression head first and I didnt even know it. Finally after numerous fights and betrayal by Tims family, numerous fights with Tim and being threatened with CPS and losing my son I sought help. Although all I did was a couple therapy session with a therapist that my OB sent me to I felt better and was finally able to go into the NICU and take care of my son, he was now able to come home and I was now finally able to be the mother that he needed.
I wont go into detail about the emotions and the fears that I felt during those almost two months but they were numerous and would take forever to go through. I think the biggest fear the we and all preemie parents deal with is whether our baby or babies are going to survive. I know that Dante wasnt a premature as some babies but he was extremely small for his gestational age. He struggled a lot to breath and eat, he still struggles to eat enough and gain weight, after all he is almost 4 years old and roughly 30 pounds. He is healthy by all means and happy as can be just small. We are lucky to have no health problems as of yet with him but I know that things can always happen down the road especially with a preemie child. I have been left with a fear that something will happen to him or that we will take him into a routine check up and they will find something but then I guess that is every parents fear.

More of Dante's story can be found here ~ link

Now lets fast forward from 2008 to 2012 (this may turn into a birth story since i dont remember actually writing one it may be long). I am 34 weeks pregnant with baby number two, Ive had a few issues with blood pressure but meds are doing their job, im being more closely monitored and the meds are doing their job. Ive been told that once Im 37 weeks that Im a go for my VBAC that I had planned for for so long, although I had plans to prove my OB wrong and go past my estimated due date. Sadly that wouldnt be the case, I would become a mother to a second preemie baby and go through all of the fears and worries and motions again of NICU life. My regular OB was not on the day I went in for my 34th week appointment so I saw someone else. Blood pressure was up and they were worried with my history, I was sent to L&D. I knew in my gut I was not going home. I feel that since I had already been through this once before I was able to process everything better and remember most of the details. I was checked into a room, told I was not going home, I was now on hospital bed rest till the figured out if baby needed to come now of we could give it some more time. I had Tim go home with my grandfather and our son to get things situated, to find someone to watch our son since my grandfather couldnt and my mom was too far away to come get him. That night after Tim left was a nightmare! I was told that either my heart or liver (they couldnt figure it out at the time) was trying to fail me and I had to go one very strong meds (magnesium drip) and that there was a possibility that I would be life flighted to a larger hospital hours away and away from all family.  This scared me beyond belief and I couldnt figure out why they wanted to move me when they never mentioned it with my first (after everything neither could my regular OB or the NICU staff). I remember calling Tim's phone and leaving a message cause he wasnt back in service yet and calling my mom, both messages were nothing but tears, I was scared. My aunt and uncle came to be with me for a couple hours that night, it helped having them there but it was also very awkward since the last time I had really talked to them we were in a huge fight. Anyway while they were there the doctor came in and said that they were going to keep my there in Bend but I would be on a high does of mag and would have my son by the end of the week, and that I did he was born that Friday via my second c-section.  After my aunt and uncle left i finally got ahold of Tim and my mom again and let them know I was being kept there but that I wouldnt be pregnant much longer, they had to take him soon for my life not his. My body was slowly trying to shut it self down to save him. I didnt sleep good that night at all, alone in a hospital attached to machines and being poked and prodded by nurses every couple hours isnt fun and I didnt miss that. I couldnt wait for Tim to get back. I was thankful though that at least this time we had a couple days to digest the fact that we would have a baby in the NICU. I remember breaking down out of fear and worry a few times, I can remember the thoughts that went through my head every second leading up to the surgery. I was so out of it the day he was born, the mag did a number on me and I looked like shit when my mom got there before they took me back for prep. I remember that all too familiar cold feeling your body gets after being numbed, the knowledge that you are naked on an OR table infront of a good sized group of people that you dont really know. I just wanted it over. I remember them all talking and saying he was a boy and out and waiting for that first cry or more like wimper from him. I remember hear that Tim cut the cord again and tell him to stay with our son. This time with the c-section they used pitocin in my IV as they were closing me up to help stop or slow the bleeding since it was found that they reason I had issues last time was that I have a clotting disorder. I was so drugged up from the surgery and the mag and everything else that I was not allowed out of bed for a couple days and then when i did get out of bed after that I had to have some one walk with me but me being me stopped bugging the nurses and just had Tim help me and started doing everything myself again and boy walking when you are that drugged is no fun, you have no balance at all and are totally weak, I was only allowed to go see my son after 24+ hours and had to be in a wheel chair, I wasnt allowed to walk for some time. I remember after they finally took me off of everything and I was oked to take a shower (like a week later) I made the mistake of letting Tim go eat and taking a steamy hot shower, I blacked out for a few seconds and was pretty light headed for some time after that but I felt human again at least. 
Unlike Dante who spent roughly two months in the NICU, Trystan only spent three weeks. When Tim last saw him the night he was born he was only on oxygen and no blue light bed for jaundice. That next day when I saw him he was on room air! They told us that he didnt even stay on the O2 that night and that he was doing amazing on the colostrum that I was pumping for him and they couldnt believe that roughly 24 hours later I was getting as much out as I was. I was set on giving him the best and that I did. He was so different from Dante, Dante struggled to gain weight and Trystan was gaining ounces on ounces daily sometimes even over a pound in 24 hours! My milk was doing what it was suppost to do, and then it hit. Was the reason that Dante had weight problems because of me? Was it cause I wasnt able to supple him with my milk when he needed it most? I still look at him to this day and wonder that. I know there is no way to know if his size is just meant to be or cause I couldnt give him what nature knew he needed. I was so happy the day that they told us he could go home, we roomed in with him in one of the l&d suites and that night was great, I didnt mind the fact that we had to get up ever few hours to feed him and for me to pump, we were taking care of our baby and we were not being bugged. This time, this NICU stay we were both so much more relaxed and prepared, I still suffered from PPD but this time I was able to over come it while there and be there for my son every day that I could be.
Im so happy to say that Trystan is now almost 10 months old and 18 pounds, way bigger then his brother was at this age and doing so well. I was able to exclusively pump for 6 months and had enough frozen milk to last him till 7 months of age. He isnt a year yet and I know since we are going through flu and cold season that he could catch something that can send him back into the hospital but Im not feeling as worried this time. I know what I am doing even if I am doing some different parenting things.

My boys are a blessing and miracles. They may be a part of the statistic but you know what they made me stronger and a better person/parent. I would love to see that sometime in their lifetime that premature birth is completely wiped out and all babies are able and allowed to stay in the womb till they are ready to come out but I know there will always be those times when moms life is in danger or something just happens.

Ain't No Roller Coaster ~ Facebook (Preemie mom page with links to March Of Dimes articles, she also has a blog that is really helpful)

No comments:

Post a Comment