Well i got in for my ultrasound with the specialist yesterday. It was very long and very different from any i had before. They checked each part of him so carefully! After about an hour she said to me well he has CDH but i have some good news lets go back to my office and chat. Dr M is a very kind lady im so glad we got referred to her.
We sit down and she said to us that they wanted to see if he had atleast 43% of a right lung well guess what guys they seen 60%. The left lung is to hidden to tell if its developed but she said since the right is growing well they can work with that. They dont know if his lungs will work well but they can help him with that and hopefully one day not need help. First plus of the day. She said his heart has 4 chambers and looked like it was working well. She said she wants to make sure she didnt miss anything with the heart so we will see a heart specialist in the new year . But that sounds promising even if it is on the wrong side! His stomach is completely on top of his Left lung along with part of his intestines so that was confirmed! This ultrasound was done so slowly i even seen his stomach was clearly in his chest . We got another piece of good news since the whole seemed packed with stomach they dont see the chance of more organs moving. His liver was one they prayed stayed put and it is where it suppose to be. I guess they dont like moving livers around so the fact his stay put is another big deal! Because all his organs other then the lung is growing so well they dont think he has other chromosome issues . his chances of another condition like that has dropped to 1% at this time. We do have a choice of a test that can make sure while im pregnant but the risks are to high so scott and I made a choice to wait for testing till hes born since his chances are low. We would have to do it later in my pregnancy if something goes wrong though. But at this point they dont see a reason too. I will meet in Jan to discuss this more with the genetics team but we already made the choice on that after talking to the specialist. At this time they have ruled out operating on me to fix him while hes in me which is very invasive so im so thrilled on that. They also dont see us having to leave Saskatoon for anything at this point unless some random thing happens another weight has bin lifted. His situation is still serious but survival looks so good at this point he will have surgeries and a hard go for a bit but we keep hearing so much on his side it gives us more hope every visit. Jacob is our little fighter. The poor guy has hiccups 24/7 from the hole in his diaphragm. She said its possible they wotn stop till he has surgery so when im 9 month prego it could get interesting. He moves like crazy and is very active which thrilled our doctor They wotn do an ultrasound till christmas woo hoo they thought he looked good and wanna give him a break before all the tests in January and i will also have an MRI in the new year pray for all his test as they go please :). He is already inspiring us on how tough he is and i think hes going to show us what hes made of later. Thanks for all the love and prayers again Love Chantel and Scott
Friday, 23 November 2012
Monday, 19 November 2012
Alot to take in...
I have bin learning alot about my sons birth defect this week . Its hard to hear things like could be oxygen dependent, delayed development, hearing loss from all the medication, bowl obstruction, seizures, chronic lung disease and failure to thrive. I have heard alot of success stories this week but also alot of scary stories. Im trying so hard to go on and except whats ahead. I did find a support group which helps alot. One lady from BC contacted me and told me her story its nice having ppl understand my pain right now.
We are told to plan for this little man yet i have that fear if i connect to much with him being okay what if hes not and i come home to a finished baby room with know baby. Im a mother and this is the one time in my life i have no idea how to fix things and it makes me feel helpless. I know its in the doctors hands to bring my son home to me.
This situation doesnt always feel real i think i have moments of denial.
I also learnt to many ppl have never heard of this birth defect. The sad thing is parents who find out have no idea what it is yet it happens to enough babies it should be recognized. I think Jacob was given to us to get the word out their and spread hope to those parents who feel the pain we are right now.
The hardest term im trying to stomach this week its my child will be special needs. I know their could be worse things like he could die from this. But i never thought we would be that family. I dont mean that in a terrible way its just hard to hear.
My dad said to me that if god gave me this child because he knows i can handle it and that im an amazing mother who loves my child. This will teach our family to love in a whole new way and bring us alot closer. My father is a smart man and really helps me with my outlook i have no idea where i would be right now without him.
Love everyone alot and keep praying for Jacob
Friday, 16 November 2012
The day we got the news no one prepared us for....
Today was the day we got ourselves ready for our mid way ultrasound. We where excited to find out if the baby was a boy or a girl. From this point we thought we had a healthy growing baby. I remember being nervous but thinking everything was fine last time so im sure we have no need to worry. Then i got drinking the water lol I always found this part the worst . They make you filly our bladder with tons till you feel like you make explode and your bladder . Then they do an ultrasound on you while you pray you dont pee your pants.
The ultrasound seemed normal i lied their while she took her measurements. Showed us the baby kicking and being cute. Baby was acting just like dad when baby decided to relax with one hand on the babies head and the other playing with his or her eye. Then she said i think the baby is a BOY. She left the room to go print us pictures we looked at each other all excited . Another boy to add to the family how fun. Then the man entered...
I need to talk to you both he said in kind of a sound that makes you think this isnt going to be good. He says how our baby has a serious medical condition certain areas didnt develop right and is causing problems. Then he said some babies live some die . Im calling you doctor now go see him as soon as possible. Then he left didnt explain much but he may live or die. I felt like i was kicked in the stomach. The life left my body for a bit i told Scott i just wanted to go home for a bit before the appointment instead of going shopping. We got home and i cried like i have never cried. I cant lose a child i already feel him inside of me. How could this happen.
On our way to the hospital to see our doctor i stopped and seen a sign that said "trust god". I looked at Scott and said that is what we need to do. We got up to the forth floor and got to the waiting room. The nurse calls me to weigh me and take my blood pressure. I said it may be high shes like i know and that is okay. I looked around and all these nurses had the look like they all seen my records and know exactly what is going on. She then tells me my blood pressure is okay and takes me in a room with a bunch of chairs. I sit down the first person who comes in Dr. O my normal gyno. He starts by telling us a bit about the condition but says its better if the specialist team explains it better. He says that hes passing off care to them and we are in good hands. Tells me this isnt my faults their is nothing we did to cause this. He leaves the room and calls in the specialist.
Scott and I prepare ourselves for what was about to come. I grabbed a bunch of kleenex into my shaking hands then i looked up at the specialists and they said they would explain everything now.
They tell me my baby boy has a hernia that caused his left side diaphram not to form. When this happens organs start to move into the lung cavity and restrict the lungs from growing. Then they went on by saying my son stomach and digestive track is already on top his left lung which caused his heart to shift to the right side. This puts strain on both side of the lungs and on the heart. They tell me how this can be a death sentence if the lungs dont develop at all but they see lung tissue so that gave us a bit of hope. They tell us how this could also mean heart defects and other chromosone issues we may not find out till later. They tell me they will watch him every 1-2 weeks and make sure he is okay and if he takes a sudden turn for bad they will send me across the country to the bets hospital to operate either while hes in me or out depending whats going on. I feel like my heart has bin ripped out of my chest by this point and i start to cry very hard. The specialist grabs kleenex and says we will save him dear we just have a long road ahead. Their is always chance of losing him but things look good.
The plan gets set in about if he makes it to full term here he will go straight to the NICU and then around day 2-7 he will have his first big surgery. They explain how they may have him on a bipass machine or just on oxygen depending on how hes doing. Then after surgery he will have many machines on him so to prepare ourselves. We have no idea how many surgeries he will need. The lady looking at us says expect him to be born looking different his belly will be sunkin in because lack of organs and his chest will be pushed out from all the organs in his chest. All thats going through my head is he cant die and our dreams for a normal life are gone for a long time. Then i think of my poor baby struggling to stay alive. I just want to be able to bring him home one day. Then Dr. M the specialist says go home paint your baby room and buy him clothing we will do our best that he uses that room one day.
This day took place on November 14th 2012 its now couple days later im trying to hard to be strong but i have some hard moments. We thank everyone for the support we are receiving . We will need tons and please follow this blog to find out more about baby Jacob and yes he has a name . This is Jacobs fight !
The ultrasound seemed normal i lied their while she took her measurements. Showed us the baby kicking and being cute. Baby was acting just like dad when baby decided to relax with one hand on the babies head and the other playing with his or her eye. Then she said i think the baby is a BOY. She left the room to go print us pictures we looked at each other all excited . Another boy to add to the family how fun. Then the man entered...
I need to talk to you both he said in kind of a sound that makes you think this isnt going to be good. He says how our baby has a serious medical condition certain areas didnt develop right and is causing problems. Then he said some babies live some die . Im calling you doctor now go see him as soon as possible. Then he left didnt explain much but he may live or die. I felt like i was kicked in the stomach. The life left my body for a bit i told Scott i just wanted to go home for a bit before the appointment instead of going shopping. We got home and i cried like i have never cried. I cant lose a child i already feel him inside of me. How could this happen.
On our way to the hospital to see our doctor i stopped and seen a sign that said "trust god". I looked at Scott and said that is what we need to do. We got up to the forth floor and got to the waiting room. The nurse calls me to weigh me and take my blood pressure. I said it may be high shes like i know and that is okay. I looked around and all these nurses had the look like they all seen my records and know exactly what is going on. She then tells me my blood pressure is okay and takes me in a room with a bunch of chairs. I sit down the first person who comes in Dr. O my normal gyno. He starts by telling us a bit about the condition but says its better if the specialist team explains it better. He says that hes passing off care to them and we are in good hands. Tells me this isnt my faults their is nothing we did to cause this. He leaves the room and calls in the specialist.
Scott and I prepare ourselves for what was about to come. I grabbed a bunch of kleenex into my shaking hands then i looked up at the specialists and they said they would explain everything now.
They tell me my baby boy has a hernia that caused his left side diaphram not to form. When this happens organs start to move into the lung cavity and restrict the lungs from growing. Then they went on by saying my son stomach and digestive track is already on top his left lung which caused his heart to shift to the right side. This puts strain on both side of the lungs and on the heart. They tell me how this can be a death sentence if the lungs dont develop at all but they see lung tissue so that gave us a bit of hope. They tell us how this could also mean heart defects and other chromosone issues we may not find out till later. They tell me they will watch him every 1-2 weeks and make sure he is okay and if he takes a sudden turn for bad they will send me across the country to the bets hospital to operate either while hes in me or out depending whats going on. I feel like my heart has bin ripped out of my chest by this point and i start to cry very hard. The specialist grabs kleenex and says we will save him dear we just have a long road ahead. Their is always chance of losing him but things look good.
The plan gets set in about if he makes it to full term here he will go straight to the NICU and then around day 2-7 he will have his first big surgery. They explain how they may have him on a bipass machine or just on oxygen depending on how hes doing. Then after surgery he will have many machines on him so to prepare ourselves. We have no idea how many surgeries he will need. The lady looking at us says expect him to be born looking different his belly will be sunkin in because lack of organs and his chest will be pushed out from all the organs in his chest. All thats going through my head is he cant die and our dreams for a normal life are gone for a long time. Then i think of my poor baby struggling to stay alive. I just want to be able to bring him home one day. Then Dr. M the specialist says go home paint your baby room and buy him clothing we will do our best that he uses that room one day.
This day took place on November 14th 2012 its now couple days later im trying to hard to be strong but i have some hard moments. We thank everyone for the support we are receiving . We will need tons and please follow this blog to find out more about baby Jacob and yes he has a name . This is Jacobs fight !
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