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

Monday, June 27, 2011

Dr appointment for 6-23 went very good!

 Doctor appointment went good . Parker  weighed  4lbs 1oz ( last time was 2 lbs  15oz), He has hair and has practiced his breathing which is  good. We tried to get  more 3D  pics  but as we all know to well he wants to surprise us with  that he looks like when he  comes out. We were able to see that he has  some chubby cheeks. His hands are always in his face  and then he moved  them and  put his  toes up there  lol. My fluid  levels are still in the normal rage, Valastos  said they are  steady and  it looks  good :)  We have a  head to lung ratio of a 3( last time was only a 2.1) so that too was  awesome!  They have gave me  a  date for the  exit procedure  it is  July 29th which means we are ONLY 32 days away  YIKES....  I am  excited yet  scared for him to come. The  doctors  say things are looking  good it is now just waiting to see how the lungs will operate when he comes out.  Once again thanks for all the prayers, I can never thank you all enough.
* Pray that  no early signs of labor  before  July 29th***STAY  PUT  PARKER***
* Lung growth*
and  most important
* his lungs  operate good enough to not have ECMO*

 Next appointment is on 7-7 * Pray for good news* <3
I would love to talk to other CDH mommies! If you would like to add me on Facebook!/profile.php?id=1550320221
Just send me a  message :)

Thursday, June 16, 2011

Things are going pretty smooth with the exceptions of the millions of thoughts running through my mind

I went to the FCI  last Thursday the 9th , it was  4 weeks  past my intervention surgery. As I have said before we expected the  head lung ratio to go down and it did. The ratio went from a 2.8 to a 2.1 not sure yet what the  lung volume is  yet ( Before the  surgery it was only 12%).  This is the 1st Thursday  since we found out the diagnosis  that we have not had an appointment, I must say I would rather have the appointment so I know what  is going on. Next week we go back and we are hoping that the  ratio  goes up a lil bit more and  that he  weighs close to at least 4 lbs** Keeping my  fingers crossed**
I had a regular prenatal appointment on Tuesday and  everything looks  good. She was happy to see that I gained 3 lbs so that brings me to a total of 8 lbs :) I am measuring at 32 weeks  but I was only 30 at the  time but she said I have been measuring 2 weeks ahead of time so it is nothing to worry about.
 I  find it crazy that tomorrow I will be 31 weeks it is all coming to fast. In one way I am excited to get him here  but on the other hand with the odds stacked against us I would rather him  stay in there for another 30 weeks. Even with all the  complications I have had I have loved being pregnant. Those lil kicks that I get from him  just  melt my heart I cant help but  love them, even the  rib shots  <3
I had a conversation with my  husband the other day  that I never would have though I would need to have  before I even see my baby. What are we gonna  do if  the worst  thing happens.... It is something that I know I need to kinda think about  b/c if anything happens I wont be in the right state of mind to think of anything  but I feel like if I even think about it  than I am giving up hope and hope is all I have.
Everyday that  passes I get more and more scared for what  he is going to have to go through and the road we are about to go down.
**For now we pray that 
-He stays put safe and sound right where he is at until the Dr's say it is ok for him to come( min of 43 days)
-Continue lung growth  and  volume
-NO ECMO when he does come
Thank you for everyone who is  reading this and the  continue prayers that  we are getting, I wish I could thank each and everyone of you.

Friday, June 3, 2011

Our lil guy is seeing progress

 On  Tuesday I went to  my regular OB  for my prenatal checkup and  everything there seems to be great, besides they want me to  possibly  gain  more weight. I  have only gained 5lbs  so far  and she said they would like to see at least  10lbs    ( if only they knew I eat all the time  :) ). My blood pressure and everything else  looked good !
Yesterday  we went to the  Fetal Care Institute (FCI) and  we got good news there too.  They said the babies heart looks amazing and  very strong :) We got a head  lung ratio of 2.8 ....last week was 2.4 so  it is moving on  up. I asked  Dr. Yang  where  or what  do we need to be at  or what is  a healthy baby at usually. He( Dr. Yang)  said  that with a  non CDH baby they  have  BOTH lungs that are  at  2.8 or  a lil higher, but we only have  been measuring the  right lung  since the left lung is so compressed and  hidden  by the other organs. Yang  said it appears that  right lung  could be  close to a  NORMAL  lung  but we are not sure  how much left lung is there  b/c it is so hard to see ( We do know that there is  some there we seen it right after the  Gel surgery ). I know both Dr's were excited with the  left lung they did see when they could see it so I feel good with thinking that he has a "good" amount of left lung.  We are  very excited that that  lil guys  right lung is  close to a normal lung. We have a MRI  next Wednesday  and that should give us a better idea of what  the lungs look like and the  volume they have. Last time  the  MRI  showed that his  right lung only had a  12%  volume and that is when the  head lung ratio was in the low 1's.  With it now being  high 2's  we should get some  good volume numbers. They also measure the  fluid around the baby b/c with CDH babies the  fluid can  build up faster than normal   but so far I am still in the  good  zone and they haven't said anything about it being  close to high so I was happy to hear that too!
They  gave us  some  more  3D  pics  but  being a stubborn  lil boy that he is  ( Dustin's son for sure) he kept putting his arm in front of his face and then  he  dug his face into the  placenta. So we will try again next  week I suppose. Since they only weigh him every other week   this week he  weighed 2lbs 15ozs.... almost 3 lbs! 
Please  keep  our lil guy in your prayers  we still  have a  long way  way to  go  and  need every thought and  prayer that we can  get for him. Thanks for the prayers thus far, I don't think I will ever be able to say  thank you enough <3 I must stay pregnant for at least 56 more  days  to make it to 37 weeks .... they  still have not given me a date for delivery.

Sunday, May 29, 2011

Everyday makes it just a lil closer

        I sat around today and  was thinking  how I cant wait to have  my lil  guy to  chase  by the  pool and  spend   my summer days with. I so cant wait to see his lil face and  hold those lil feet that have  been kicking me  every night. It amazes me how I can  love someone so much and he isn't even here yet and he is already  my world. I catch myself talking about  how things are going to be  when he is older or  just things I wanna do  with him and  then  I am brought back to reality that we are not sure we  even have a future and  it crushes me on the inside that I even have to think like that. I just want  so bad to wake up and  this just be a nightmare and  I find out that  my babies lungs are  perfect and there is no doubt I will bring him home. I don't feel  bad  for myself for having to deal with  all the  stress and  anxiety  from knowing that My baby has CDH, I feel bad when I think about  how hard he is going to have it  in just the first  couple weeks of his life and that I am  helpless in  doing anything to help him.
I keep thinking about how my delivery is  going to  happen and how that  day is  going  happen. Just thinking about it  scares me to  death. I  get asked  well you are  excited  right?  I am  so excited to see that little face that I have been  trying to  have for  many years now, but I know  him being inside me is the  safest  place for him and  the only way I can  protect him. Knowing that  I am going to wake up and he  wont be in there anymore  just don't seem real after having 3 other surgery while  pregnant and  I would always  ask is my  baby OK and now it wont be that easy.

          I was reading through another mothers  blog who has a baby with CDH and I found  some  words that   I thought  were  really good .
      Having a baby with a birth defect such as CDH or any other kind, does not mean you are less blessed then someone who does not have one. If your child dies in the womb or outside of the womb at ANY age, you are not less of a mother or father.  In fact, your more blessed then you think.  We are more blessed.  Because God has chosen us to be there mommies and daddies.  He chose us before they were even thought of, and God KNEW that only a strong Mommy and Daddy could endure such heart ache. It's ok to hurt, it doesn't mean we've given up.  It's ok to cry, it doesn't mean we don't have hope.  The important thing is that we don't get off track, and we keep pushing toward the finish line

Thursday, May 26, 2011

Dr. Visit didnt go like it normally does , but we had a little bit of progress!

The  Dr. appointment didn't go as I had hoped for today. The office was a bit hectic due to another mother giving birth and  one of the regular Dr.s I see every week is out of town for work and  there was a different ultrasound tech there too! Usually  the 2 doctors and the ultrasound tech each do a measurement and then give me the average  but today  only one doctor and  I am really not even sure if the  tech  did a measurement, but we  did get a little better on the head lung ratio it is now a  2.4.Dr.Yang said that  the lungs are not as bright ( the gel made them appear bright on the ultrasound) so there is a  chance that the  gel is dissolving. We knew this would happen  but just had hoped that the gel would have stayed  in there for a bit longer. It is not totally gone but we  think it might be dissolving he said it is hard to tell. I am happy to  hear there was a bit of an increase in the  ratio  I guess I just  had hoped for more.I asked  if they had set a date for me to have the c section but he said they were going to take careful consideration  in determining  that so once again  is is unknown. I am praying that Dr.Yang will be in town when I give  birth and he is able to do the  surgery on the baby as well ( He had a vacation planned to go home before I came to the Fetal Care Institute), I asked him today and  he said he is working on it  so we will see. He is an amazing doctor  that I know will take great  care of my little guy. I hope next weeks visit there is still a little more growth   we are hoping to get into the 3's before the  gel is gone.  Thanks to  everyone who is  reading this  and  praying for  my little  guy  weather I know you or not I am  beyond thankful for every single prayer  he gets.

Friday, May 20, 2011

Taking it one day at a time

The  doctor appointment went  really good yesterday.Our lil guy now weighs  2lbs 5oz! All the  doctors were very excited to see  both the lungs! The head to lung ratio was a 2.1, the past visits  it has been a  1.1 then a 1.6 then a  1.3  which means  2.1 was very exciting to hear! I have  3 different people that  do measurements and  then they  take the average between the 3  and  one of them even got a 2 . 7  which is amazing! We have to hope and pray that the lungs continue to grow for another 3 weeks and the head to lung ratio  goes  up, after  the 3 weeks we expect the  head to lung to  go  down  b/c then the  gel will be  gone. The higher we can get it  in the next 3 weeks the better :) They said  that  the gel seems to be  doing exactly what it is suppose to be doing, so  we had a good take !  Dr. Valastos said that in the past if the  gel has taken like ours has then we should continue to see growth. We  took a  tour of the  NICU, that will be my home for a while after he is born.  Thank you all for the  prayers they  seem to be  working so please keep them coming we still have a long road ahead of us. Most of all lets hope he  stays  put inside for at least another  70 days ! In the mean time he is having a  blast kicking away in there and I am loving every minute of it !

Tuesday, May 17, 2011

Wow almost 7 months along already...

It  really seems like  just yesterday I had the nurse walk in and tell me  I was  pregnant. I was beyond excited  I didn't know  what to do or who to call. ( Normally  people will tell their husbands 1st  but  mine works  midnights  so he was sleeping and the phone was off)  I remember thinking  August is so far away, now with  just about  2 months  left I look back and think where did time  go. In one since I cant wait to see his  sweet lil face and  hold his hand  but  then the thought  of him not being inside where he is safe  scares the heck out of me. I am going to  miss the  kicks that  keep me up all night  and when I laugh and  Dustin looks at me  like I am  crazy b/c I am laughing out  of no where. I sit here and think  about how hectic our lives are  right now with  all the  hospital stays and  Dr. visits and  this is nothing compared to what we will face in  about 72 days.  For now I just live  day by day, and  everyday  lil guy stays inside its even better. I am  excited to see  what the Dr's say on Thursday, I hope and  pray the  gel  works and  does what  we  think it is suppose to do. I have talked to other moms who had it done and  with one it worked and the other there was no  change. I am  lucky number 6  to have the  procedure  done ( well lets hope its lucky #6). Thanks for all the prayers  I truly do thank  all of you from the bottom of my heart  <3
 26w4d ( Almost 7 months) <3

Friday, May 13, 2011

Time is what we need....

I look back  at the past month and think how much my life has  changed. I never in my wildest  dreams would have  thought this pregnancy would have included 3 surgery's in a little over a month, that my baby would be born with such a scary thing like CDH. Now we just have to wait to see if the gel in his lungs will work as well as it did for the  other baby. The  Dr came in and  done an ultrasound yesterday  before I left  the hospital and   to our surprise we could actually see a  left lung for the  1st time  on an ultrasound. I knew then  that  doing that  surgery was  defiantly the  right thing to do so our lil guy  will have a  fighting chance. I am excited yet  scared at the same time to see what  the  next month will bring us. Right now  we are hoping I stay pregnant for the  next 78 days, which will put me at 37 weeks.  In the mean time  our lil guy has been  kicking away :) and I love  evry lil kick I  get . Thanks for all the  thoughts and prayers<3

Friday, May 6, 2011

Had a rough week and I am I pretty sure next week will be just about the same

So  the past week has  been  rough. Had to  go to the hospital again  with pain in my stomach and  they thought it was my ovary twisting again but then  they  got in there and found that  I have a fibroid that is huge and is attached to the  ovary. While in there they  seen  pus  around my appendix so they took that out  not really knowing if  that was  causing me the pain but they wanted to take it just in case. So we left the hospital after a  2 night  stay and  headed to Cardinal  Glennon  to the  Fetal Care Institute (FCI)  I was  praying we would get good news again but I  know that with CDH  babies  good news is not a  very common thing to happen. The doctors  couldn't really get a   great  view  b/c the baby was  curled up and  with all the gas in my stomach from just having surgery  they  couldn't get the best of views. We could tell that his  lungs were  not  growing like we had hoped for  so they said if we wanted to do the hydrogel procedure  it would be best  that we do that  next week. That would mean yet another surgery for me to have to go through (#3), but if there is a  chance it can save my baby then I will do it. The scary thing is  after I have it I am going to be  high risk for  early labor and  they told me that  I HAVE to make it to 37 weeks for a chance. Then most likely at  37 weeks I will have a  scheduled  c section... I just hope that the  surgery goes smooth and I get through it without any contractions. I still find it  hard to believe that  all of this is happening. I find myself  wondering if I can  handle all of this before he is even here  and then what I have to  face when he  gets here, then I  get this little kick from inside telling me that it is all worth it. For the next week   I need  everyone to pray that   the surgery goes well and  the  week following  as well since I will be at high risk  of preterm labor.

Friday, April 29, 2011

6 months already

I  really can not  believe it has already been  6 months and  even better only 3 months till I get to see his little face. Most parents  look more  toward holding their little one, but with  CDH  I have somewhat  came to accept the  fact that it will be a bit longer  till we  get to  hold  our baby. So for now I  long to  see his little face and  hands. It is really crazy how  the past  6 months have  changed   my life. Before I got  pregnant   all I  did was  work and  spend time with  family and  friends, now in  6 short months  my life has been consumed with  just thoughts of  my baby and the future. We went from planning a shower  to worrying about  me and baby  making it through  surgery, back to planning a shower when we found out it was a  boy..... then we get the news that he has   CDH and  now  it is just  dr appointment  after  dr. appointment (  but  I get  tons of ultrasounds and get to see him every week). I only wish I could see the  future and see what it has in store for us  besides  a  good long stay in the hospital.

Thursday, April 28, 2011

Dr. appointment went well today

Our  Dr appointment went   a lot better this week than  last week. Our lil guy is  growing and  getting  stronger.  He now  weighs  1lb 4 oz! Last Thursday is  head to  lung ratio ( What they use to measure his lungs) was  1.1 this week it measured 1.6., the  larger the  better  it means his  lung is  getting  bigger! Last week we were told his liver was  60-70 % up and  today it looked as if it was only  30-40 %  up in his chest. I hope it continues to   stay  either where it is or even  leave  the  chest all together. With the  numbers we had last week the board  approved  us to be able to have the tracheal inclusion  to where they  would insert a  hydrogel into his  lungs to help stimulate lung growth. Dr. Yang wants to  hold of   just yet on getting that  since his lungs seem to be  improving slowly. If they can  grow on their own that is even better!  With all the bad news we  have  been  getting I will take the  little bit of good news that  they have to give. I know we still have  a  very long and  crazy  road ahead of us, there is  going to be  plenty of ups and  downs. Tomorrow I will be  6 Months  which means only 3 more months till I  get to see my lil  guy <3 Please  keep the prayers coming for him as he has  a long  fight ahead of him