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
Sunday, August 14, 2011
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!
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 :)
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....
FOR THE NEXT 12 DAYS PLEASE PRAY THAT PARKER
* 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
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....
FOR THE NEXT 12 DAYS PLEASE PRAY THAT PARKER
* 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
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
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
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
http://www.facebook.com/#!/profile.php?id=1550320221
Just send me a message :)
* 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
http://www.facebook.com/#!/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.
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.
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
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
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
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