I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
Psalm 139:14

Sunday, August 30, 2009

Another Winnipeg Appointment

Well, I'm not sure where to begin with this entry. We had another appointment with Dr. Reid on Friday and once again there was bad news. The baby has been moving around a lot and so I really had high hopes that perhaps there would be positive news at this meeting. Now it is not just the abdomen that is too small but the chest area is also too small which is causing the lungs to be really small and not developing properly. This means that the baby will have an extremely difficult time catching a breath when it is born if it will even be able to at all. The scoliosis is also pretty bad which means that the lower spine is very curved. Dr. Reid showed us a picture of how this will probably look in one of his medical books and I found it to be very disturbing. This scoliosis may be causing some nerve damage to the lower body that will not be known until it is born. This baby's chance of survival is not very good at all.
We also talked to Shawna. I believe she is the head of the NICU and she told us all of the hurdles that this baby will have to overcome to even get to the point of having surgery. She said that she doesn't think this baby is capable of overcoming even the first one, which is taking a breath. This baby will likely live for a few minutes or a few hours. She said that if this baby does make it through this hurdle there is still the stabalization hurdle which will take a few days and will be extremely difficult and then surgery would happen. There are many hurdles after surgery such as infections.
I asked Shawna if there as ever been a case like this at HSC and she said that she could think of two ever. One baby survived and one did not. She said that it is impossible to give a a survival rating because each case and each baby is different. She kept telling us that she was very concerned about this baby and that things didn't look good.
Nathan and I have some decisions to make in the next few weeks that we need your prayers for. One is that we have been given the option to deliver at Boundary Trails Hospital where our baby will be put on comfort support when it is born until it passes away and the other option is to deliver at HSC and have the baby taken away immediately to try to save it. The benefit to having this baby at Boundary Trails would be that we would be able to be with it as it passes away whereas at HSC we may never get to see it alive. We really don't know what to decide about this. And another decision we will have to make is that if I deliver at HSC will it be at the Women's Hospital or at the Children's Hospital. The Women's Hospital is more ideal for myself in case there are any complications, but the Children's Hospital is more convenient for the baby because it will be close to where it will be staying to keep alive.
The combination of all of these problems has a name called Body Stalk Anomaly. It is not a genetic condition.
I will be having an MRI in the next few weeks in Winnipeg so that the doctors can have a better look at the size of everything on the baby. I'm not sure of the date yet, but I will update as soon as I find out anything else. I will also have another appointment in Winnipeg on October 5th and I will then meet with Dr. Wiseman who will be my pediatric surgeon. I have heard good things about him. I will also get a tour of the delivery area and the NICU then.
During my ultrasound we were able to see the baby trying to breath on its own which is a good thing because this is what babies are supposed to be doing at this stage. It also kicked the paddle a few times as the ultrasound was being done which made me smile. It is such a sweet little thing with a very hard life ahead of it, if there is one at all.


  1. Oh Crystal. There are no words. Praying for you and little baby Rachul.

  2. Nathan & Crystal, I am so sorry to hear that there was more dissappointing news for you guys. We will continue to pray, pray, and pray some more!! It sounds like you have many hard decisions to make and I will pray that God will give you wisdom on what is best for you and the baby.

  3. I am so sorry that the news wasn't better at your appointment. I will be praying for you as you make a decision within the next few weeks and that it would be a decision that you would have peace about.

  4. I found your blog through Wenona's Crystal... My heart breaks for you and Nathan, and I know there are probably not any right words... Praying for you Nathan and your precious baby.

  5. I really don't know what to say, other than I'm still praying for you.

  6. Crystal, you guys and baby continue to be in our prayers while you make this difficult decision.

  7. The choices you have are much the same as Hank and Jo's were. You have read her blog and know what their choice was...I will never forget waiting at the hospital from 9 1/2 cm to delivery (4 hours)and knowing that we would be there for them the instant they needed us. Noah did not live but there was a celebration atmosphere in the room and it was precious.
    Make a plan for your baby's life and your wishes and I pray the LORDs amazing peace as you welcome your child into this world no matter for how long. Remember the LORD has a plan for your child too. It is humbling to know that our Noah and your child fulfilled the plans way before us.
    I encourage you to find out if you are having a boy or girl, name your baby and say the name as often as possible.

  8. Wow, still praying. I think Verna had some great things to say too.

  9. Hi there,

    I'm the mother of a CDH baby and I found your blog through another CDH family's blog. I just wanted to let you know that our family is praying and sending positive thoughts your way. I know it's hard to hear tough news and I know the baby has additional hurdles beyond CDH, but the thing with CDH is that it is very hard to predict the outcome based on the in-utero diagnostics.

    When we were getting the tour of the NICU at Children's Hospital of Philadelphia, we asked the nurse giving the tour if other CDH children with a LHR of greater than 1.4 had survived in done well in her experience (Jaxson's LHR was 1.4 at that time). She said there have been babies with less than a 1.0 LHR that have done great and ones with over a 2.0 that have terrible. She said we can measure the lungs but we can't predict how well they will function.

    Our son's left lung was extremely small, but when he was born he came out screaming. I only say all this because although you're dealing with some challenging decisions there is hope.

    If you ever need anything please don't hesitiate to reach out. My blog has all my contact info www.cdhsurvivorjaxson.blogspot.com.


  10. Praying that God will lead you to the right decision for you and your precious baby.

  11. Nathan and Crystal just a note to let you know you guys are in our thoughts and prayers. Praying God will guide you in the right choices and I pray God will give you His peace and surround you with His loving arms today.


  12. Hi Nathan and Crystal...and baby Rachul,
    Just to let you know that you're in my thoughts and prayers. Thanks for the privilege of knowing about your situation (via the MAC prayer chain) so that others may help lift this heavy burden to the Throne of Grace. May you be blessed with strength for each day, unexpected and unanticipated laughter and joy, physical, emotional, mental, and spiritual health and rejuvenation, and a peace that transcends all human understanding.
    Corissa Dyck

  13. I have been thinking about you guys a lot lately. I am continuing to pray for you and Nathan and for your little sweet baby. I hope and pray that everything works out for the best.

  14. You look so beautiful in your new picture! May God comfort you and give you peace about the decisions you will make. Sending love & hugs!

  15. I will keep your family in my prayers. Our little guy was born with some complications a number of years ago and Dr. Wiseman was also our assigned pediatrician. He is wonderful!!! Our son was delivered at the Grace in Winnipeg.
    I know HSC well and if you deliver at the Womans Hosp., please dont be concerned about transporting your baby to the Childrens. With the underground tunnel system it will only take minutes. Something for you to think about is that if you deliver at Boundry Trails, will you ever rest easy because you may always wonder what would have happened if you had your baby at HSC and did everything you could possibly do. I pray you will be at peace with all your decisions.

  16. Russ and I have been praying and continue for the three of you.