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.

Pears?!!!!!

This isn't as much an update as just a sharing of my feelings at the moment.
I just canned 24 quarts of pears that I am hoping I will get to feed to my baby. I don't know how Nathan and I will eat all of them by ourselves so we need to share them with someone. I also have the baby room set up and am just waiting to have the bedding sewn so that the room is ready for a little one. I pray that this little one does not come early because it needs all the strength that it can get before going through all that it will have to. I have read everything that I can about omphaloceles and diaphramatic hernias on the Internet and have even met with a mother who has a beautiful little girl that has gone through and survived a diaphramatic hernia. So much that I have read about has shown hope, but I can not find any stories about babies that have both problems. This is discouraging because I want to read survival stories about babies just like my own.
Nathan and I have spent more time in prayer than we have ever done before. We go from begging God to heal our child to asking for acceptance to whatever His will is for our child. It is so difficult to not know the plans for one that is so loved.
This little one has been growing a lot lately, according to my doctor here in Winkler. When she measured me three weeks ago the baby seemed to be the size of one at 20 weeks (I was 26 weeks along). Last week she measured again and the baby seemed to be at 25 weeks. That is a huge blessing! The baby has begun moving around quite a bit. I feel it a lot in the mornings as I'm lying in bed and then again just before going to sleep at night. Those of you who are pregnant and are complaining about the moving don't understand how amazing that is. Enjoy every kick and punch because this is a sign of health!
There are a few things that I can tell you about the personality of our child. It is just as stubborn as it's Mommy and Daddy! Yes, those of you who know us know that this could lead to many struggles! Every time Nathan places his hand on my belly to feel a kick the baby stops moving and then kicks as soon as he takes his hand away. This baby is also giving the doctors a hard time when they want to see certain things during a ultrasound. I believe that this baby also doesn't like taco pizza because I had heartburn from it and that is the only time that I have ever had heartburn. Charissa, if you are reading this it's not because the pizza wasn't delicious! I hope to learn more as the days go by.
The following address is a song that I just received from a blog reader and would like to share it with the rest of you. Please listen to the words. They are amazing and express a lot of what I am feeling.
http://youtube.com/watch?v=J2CnUtVY35o

Thanks to all of you who are praying. I believe that God is listening and that He is using this baby's situation in many different ways for many different people. We love you all even if we don't know you by name!

-Crystal

Winnipeg Appointment

We had another appointment in Winnipeg this last Friday. First of all one of the techs began our ultrasound and showed us the cute little face of our baby. Looking at the pictures, I believe that it has Nathan's chubby cheeks! Eventually she got another tech to come in and continue the untrasound and finally Dr. Reid himself came in. They all seemed to be looking closely at the heart so I began to really worry that there would be more bad news. It turns out that our baby is just very shy of the camera and is not in a good position for them to see everything as well as they would like. There is still the omphalocele, where the intestines, lower stomach, and liver are in the ambilical cord. There is still the Diaphragmatic Hernia and the Scoliosis. Because of all the things that are not in the baby's body it is a smaller size then would be normal. Other than these things everything still seems okay. We have another appointment in four weeks and at this appointment we will be meeting with a pediatrics surgeon to discuss the procedures that will take place with our baby once it is born. I get excited for these appointments to see our baby but at the same time they are dreaded because of the situation! Thank you all so much for your support and prayers! We feel them everyday and are very grateful!!!