Sunday, August 14, 2011

The final hours ...

It has taken me a while to  be able to finish this blog up, I surely expected to be updating while in the hospital.

 July 29th came and with little  sleep  Dustin and I  made our way to the  Fetal Care Institute  to begin the  process  of the best and  we would soon find out  the hardest day or our life. Once we were there  the  two grandma's,  3  grandpa's, 2 uncles, and  a  great  aunt and  uncle showed up to  help us welcome this amazing little guy into the  world. While laying there  getting  all checked in and   ready Parker was  kicking away and I was  enjoying every last minute of it and  getting scared  as every minute that passed meant that  my little  guy would have to start his fight soon. The  ride up to delivery was  one of the  scariest moment I thought I would ever have . Delivery was a little later than  it was suppose to be  because the   Doctor was running late   but to me it didn't matter  that was just longer that I was  protecting my  baby.
Parker made his way into this  world at  9:01 am  :)  I am  not sure what time it was that  I actually got to the  NICU to see him . I woke up in recovery and all I wanted to know was that he was ok and  not on Ecmo. They kept telling me he was  doing  great and not on  ECMO, and at the time he was doing ok . At this point  family  had not  seen him  yet. As they  pushed my  bed into his  NICU  room  I seen a  lot of people  standing outside his room  and thought it was a little  weird  but I was just excited to see my   Parker,  my little  fighter.
The moment I seen him I felt complete  and for once in my life I had done something right. Even with the breathing  tubes in him  he  was perfect. He looked so much like his  daddy :) I was the happiest I had ever been in my life  with  my baby and  my husband there   standing next to me,  my two loves .
Within minutes of the best  moment in my life  it came to the  worst news anyone could ever  want to hear.       "There is nothing more we can  do" I was  so confused I was  told he was doing ok now  I was being told this was it.  I didnt  understand. They then  told me he wasnt  going to make it. My world came crashing down. How am I suppose to say  hello and  goodbye to my baby all in the same day? I just  didnt  understand what  they were telling me . They  told me that  they had the  vents on the  highest they could put them and it still was not doing enough and  he couldnt be put on ECMO b/c his lungs were not thick enough  and it would  burn them up and  right now  the  Carbon Dioxide was building up in his body and was  going to poison his  little body. My heart sank...  I was holding my  perfect little  guy that  wansnt  going to make it and I had to let him  go and  there wasnt anything I could do. I  felt so helpless, I am suppose to  protect him  and I couldnt  any more .
My amazing  nurse  Katie  is one of the best  nurses I could have  asked for. They  had mentioned taking  Parker off his  breathing machine before we  even got to see him and she said No and wouldn't let them do it , so thanks to her  I actually got to hold my baby and see him open his little eyes and he  was able to hold our fingers. She also got them to let me take Parker to St.Marys so I could spend some more time with him. She  hand pumped him  all the way there  just  so we  had  more  precious time with him  She is an amazing  women that I will never  in my life forget what she  did  for me.
Parker passed away at  2:15 in his daddies  arms.
He only  lived for a  couple short hours but he changed our  life forever.
This will be the  final blog entry for our little Parker, I will leave it up for other mothers who will have to go through this and  look for information or answers or whatever it may be that  they are looking   for

Mommy loves  you more than life it self Parker, there will not be one  second of one day that I do not think about you and what  should have  been.<3

Wednesday, July 27, 2011

36 hours till he makes his arrival!

It is hard to  believe the  day is only  36 hours away! I am  still not  really  sure if it has hit me that this is all going to happen  Friday. We have  done everything we  could do to prep for this day. As long as I  don't go into  early labor  in the  next 36 hours everything is  set up  for this one moment. I am beyond excited to see his little  face and  long for the day I will actually get to  hold him, but I know it will be weeks. I did get a  call from the fetal care institute today and   they  told me that  his head lung ratio went  from a  2.5 to a  2.8  last week so that was some good news I got. I am  trying so hard to keep all the  "what if's " out of my mind and  be thankful for what we have had so far. We have made it  so close to  37 weeks, His head lung ratio was  at a  1.3 when we  first started and  now we are  so close to a 3, we  have had only good news about how his heart looks( which is  def a  good thing) and  we know he has a left lung we just don't know how  much.... I am  so thankful for all of this! I know that  no matter what the  outcome is Parker is in the best hands at Cardinal Glennon, they are  truly some amazing dr's there <3
I  want to Thank all of you from the bottom of my heart for all the  prayers and support  we have received.  This  pregnancy isn't what  anyone would have hoped for  but I wouldn't trade it for anything b/c  I am going to have a  perfect little miracle to call my baby. I have  met some amazing  people  through this whole thing and that too is a  blessing. If it wasn't for the  support of the  other mothers  that  have been  exactly where I am  I would be a  basket case.
I  just ask that  you  keep  Parker in you thoughts and prayers  for the next couple of  weeks as he is going to have to  fight  the  odd's that are against him <3
  Pray that
* No ECMO is needed
* He lungs are  stronger than  expected
 * He  does not  have  ANY   pulmonary hypoplasia and pulmonary hypertension.
* He is able to make it home to his mommy and  daddy  <3

I will  be posting  here to update as soon as I can and I will post pics for you all to see how amazingly cute he is  .... Again thanks for the  prayers!

Thursday, July 21, 2011

WOW .... Only 1 more week

 Well today was my last   appointment with the  most amazing set of doctors I could ask for to help me with  my  little guy.  Today's appointment went  kinda like I thought it would, nothing too exciting  (well besides I got to see my  little  guy) , He now weighs  5 lbs 14 oz, he has  gained 14 oz... I figure he will weigh about  6lbs 5oz  when he is  born, not to bad considering he is  going to be  3 weeks  early.  We got some good pics of his face again  I believe he is  ready to show  the world  how  cute he is :) Other then that they  just went over what  to  expect  on the  BIG DAY.
I  try to  tell myself I am  ready for all of this to  happen so we can start the  road to  recovery and bring him home, but there is just so  much  unknown  on how things will play out when he gets here  it makes it hard to be "ready"   or even "excited". I was told today that it will be a couple of  hours after I have him before I can  see him before they  take me by ambulance to the other hospital.  I always dreamed of the day I would  have him and  get to cuddle with him but instead I have to see him and leave him, I  don't know how I am  gonna do it  just thinking about it  kills me. I know it is for the best and he will have  family by his side   but it  don't make it any easier to  accept it .
So far the  amazing response to  my prayer request has  helped Parker stay put until  they  come to get him :)
Lets continue to pray  that
*  He stays  in there for  1 more week
* He has the strength to avoid ECMO
* He  beats the odds and  is able to come home to  his mommy and daddy  <3

 Thank you  again , I  can not say it enough to  everyone that is  praying so hard  for my little  guy,  For those that are apart of  "Prayers for Parker" I  will be keeping  you all updated through this site until he is home safe and sound with us. Yes I will post pics of his cute little face too :)

Saturday, July 16, 2011

12 more days .....

It  feels so weird to  say and know that  in 12  short days  I will  have a  precious lil boy! I have waited for that day  for so long, since before I was  even married.  I always imagined what it would be like to  be pregnant and   then become a  mom, never did I  imagine it like this. Even with  everything my husband and I have been through  I  am not angry with what is going on  with Parker  anymore.   I know he is a fighter and I  pray that  he still has  that fight left in him to show the world that he isnt  going  anywhere. It seems like  everyday  as the delivery gets  closer I  get  so many thoughts going through my  head. The  "What if's"  or the  "Hopefully this"  consume my  thoughts. So many  people tell me  " Julia, it will all work out and  things are  going to be fine" and as much as I want to  believe  them  and  I really do try to tell myself that  but I  know the  truth... No one   knows what is  gonna happen  on that  day  and the weeks following his birth. My hope is that he comes out stronger than what they anticipate. They  know he has a left lung but they cant  be sure how much is there  b/c of his other organs blocking it. I just pray that he surpasses everyone's expectations, but like I said   no one knows what will happen.
 I want so bad to  have my baby shower and   get the room ready and  be excited about  everything, but then reality sits in and  I know I  shouldn't  do it  just yet.
 I have my  last  dr appointment with the  Fetal Care  this week then  Delivery  will be  next.  It  is weird to know that  after  almost 4 months  going their just about  every week  I  wont  be anymore.  I will update  with  more news of what they have to say  later this week... Sorry this  blog is all over the  place  I just  have so many thoughts  going through my mind and this seemed to be the best place to put them....
* Stays  right where is he  until it is his time to come out
* The Dr's have  good news on Thursday
*  NO ECMO the  day of and  anytime there after  he is born
Thanks  again to all of  you out there that are praying  <3

Monday, July 11, 2011

17 days and counting....

The days are  just flying  by  faster and  faster. I get more mixed emotions everyday that passes. Today my mom  brought home a  basket full of so many baby things that  a girl that she don't even know from work  made for me. It was the sweetest thing ever. For a couple minutes I actually  forgot  what my lil guy was  gonna face and I could see him  wearing the cute little crock's that were in there. It was  good to have a gift to open  since  I decided to put my  actual baby shower off till he  comes home. I have  received other  odd's and  in's from  other people but this  was an actual gift. Sounds weird but I was  very excited  and thankful  to get it  :)
 Parker has been  a  very active lil  guy these past couple of days, I am going to miss  his lil hiccups and  kicks and  jabs at my  ribs  so  much.  I  have started to pack our bags a little here and there, it seems like the more I pack the more sad I get  b/c I just want him to come home  like a  normal baby and not have to fight like he is going to.
 I find it  crazy that in 17 days  he will be here! At that point  I have  done everything   I could do  and it is now is  God's hands to  protect him like I have. I  pray that he  surprises everyone and comes out  in  a better situation than we  anticipate.
I want to  thank everyone  for is praying for him and all of your kind words. I don't want people to  think I want them to feel sorry for me  or anything like that .  I made this blog up for other parents that are  going through the same thing can relate. I know it has helped me to talk to other mothers who are going through the  same. I  made the  event up on Facebook  to ask for  prayers  b/c it is the last thing that I can  try to  do to possible get god to understand that  I want my baby  more than life itself. The support I have  received is more than I could have  ever asked for. I wish I could meet and Thank  each and everyone of you that  are praying for my  lil guys  health.

Please continue to pray that
* Parker stays  put until  the  dr's  get him out
* He is  strong enough to avoid ECMO
* He overcomes this and comes home to us

Saturday, July 9, 2011

Pics of Parker ( finally able to get some with out his hands in his face )

                                                                 34 weeks Only 3 weeks  more   his birthday

Friday, July 8, 2011

Not much longer to go till "D -Day"

Everything seems to be going  rather smooth  right now, no big changes  or concerns. I suppose I am happy about that  b/c when  Parker gets here  things will become a lil crazy. I had a Dr.appointment with the FCI  yesterday and  my lil  guy now weighs 5 LBS!  So he is still gaining weight  like he is suppose to! His  head  lung ratio went down from a  3 to a 2.5, the  doctors don't seem to be concerned with that  b/c his lungs are still "growing". I was sent to  get a steroid shot yesterday and another one today  to help with his lung maturing at a  rapid speed. I had an ECO  yesterday and   things still look good with his  heart. Still has  good blood flow the only "concern" is that  it is smashed a little on the  left side  due to all the  other organs  pressing against it , but  that is to be expected with  CDH babies  they say. I asked the doctors if there were any other  big concerns  other than the obvious  with his  lungs and he said no, that made me  feel a  bit better  that   so far there isnt  any big concerns with anything else.  My  fluid levels have went up a  lil bit  out of the normal rage and are now in the  moderate rage  but again they  say it is no big concern  yet. So things seem to be  staying pretty steady so far.
Delivery is  only 21 days away, in  3 weeks at this time  Parker will be here! I am full of so many mixed emotions. I  tell myself on a daily basis that  he will be ok and he will fight  but I cant  get rid of the thought of  "what if". As long as he has fight in him and is  fighting through this, I wont give up i just cant.  Our life has already changed so much  and  here in 21 days  we take another  long road  before we can bring him home. I cant wait  and I pray that things will be somewhat  normal  one day and  he will be a  happy healthy  lil guy.
I am not sure if many people  even read this blog but I am hoping that   whoever  does will pray that  Parker
- does NOT attempt to  make an  early arrival
- has lungs  strong enough to  avoid ECMO
- is strong enough to  fight  through this and come home to his mommy and daddy and  the rest of the family