The hardest decision we have ever had to make

Ok, so we have made what is probably the hardest decision we have ever had to make. We talked to Neonatologists, Pediatric Surgeons, Perineonatoligists, and multiple others. After talking to each of them, it just led to more confusion. So we just sat down and wrote a list of pros and cons of delivering at each place. That didn't really help either, then yesterday, the Surgeon personally called me to follow up with us. He just wanted to let me know he had talked to the Neonatologist and they had set up a plan to go to Portland and hone up on the lastest procedures for CDH. He told me that no matter our decision they were going to go to Portland anyways. After that phone call I feel that we had a lot of questions answered. So after talking to Jim, we decided to put our trust in the Doctors here in Boise. I had an uneasy feeling the whole time, just thinking of having to go to SFO. My mind has been put to ease for the time being. So this is a decision that we are going to make and stick to. Now we just need to ask for prayers for the doctors at this point and time. I am confident that they can do the necessary procedures. Now we just get to stay here and wait for little peanut to arrive. I am now 30 weeks, so it is getting closer everyday.

Lets hope that I don't have too much more information or any other excitement until I go into labor. I will keep you all up to date if anything else comes up.

Love to all,

Jaime

And the decision just got harder

As you all know we thought that we had it all figured out where to deliver. Then of course we had to have a curve ball thrown at us. Anyways we went and met with one of the Pediatric Surgeons here in Boise yesterday. He provided us some good information, then also confused us a bit more. So with everything he said we need to get into contact with the noenatologist again and talk to him. After we talk to him, then we might be able to make a decision on what we feel is the BEST choice that we can possibly make.

The surgeon basically told us that he is willing to do the surgery as long as he can get 100% commitment from one specific Neonatologist and and team in place to follow us through the rest of my pregnancy. He said as long as he can get that then he would be comfortable with doing the surgery here in Boise. He has done several of these specific surgeries. He has been practicing for over 20 years and knows quite a bit about CDH. On another note the surgeon is not the one that will be giving your baby the most care. It is the Neonatologist, so they are really the ones we want to feel the most comfortable with. So I guess now we just wait to see when we can talk with the Neonatologist again and go from there. I know we still have a "little" time, but we are starting to get closer so we need to make a decision and stick with it.

That is all I know at this point and time. I just pray that we get the answers we need and we can make the best decision possible soon.

Jaime

The confusion continues

The confusion continues... We went in for our monthly ultrasound with the Perineonatologist here in Boise. It came up in conversation that we were planning on going to SF to deliver the baby. She looked at us and asked what made us decide that we didn't want to deliver here in Boise. Both of our jaws dropped in shock. Since when was this even an option? We asked her what she was talking about and she said that we could more then likely deliver here in Boise just as easily as SF. So we talked a little more and she suggested that we meet with a Neonatologist. We went right over the the hospitals NICU and met with him. He gave us a tour of the NICU and then took us to a conference room to talk about his experience with CDH babies. He said that they have had quite a few CDH babies in the NICU in the 20 years that he has been here in Boise. He said that in the last couple they have not had any, but prior to that the had a year they had about 15 babies born in about an 8 month span that had CDH. So they are experienced with them. He had a lot of confidence in his staff and the surgeons here in Boise. (which is always a good thing) That is not enough for us at this point though.

So on Monday this coming week we will meet with on of the pediatric surgeons her in Boise. He said he will sit down with us and give us all the stats of the outcome of babies born here, babies born nation wide at other hospitals and also what he would do if it was his wife going through this. After talking to him on the phone I think that no matter what after the meeting with him on Monday we will fell a lot better about our decision we make. I think if a surgeon tells you what they would do it couldn't be all bad right?

I just hope that we are open enough to hear everything we need to and not what we want to, just to stay in Boise. Of course that would be the ideal situation, but we have to keep in mind this is not about us. It is about what is BEST for our baby. I just pray that we are able to make the right decision and feel very confident in that decision.

I will let you all know how Monday goes.

Love,

Jaime

Baby Peanut Prinzing

Update

So Jim and I took a trip to San Francisco last Thursday and met with some more specialists and had more tests done. We had another ultrasound and an echocardiogram done. They were looking to see how many organs they could see in the chest cavity and also if the heart was normal or not. After a few hours of testing and meeting with 4 different Dr's we learned that the heart is normal and our amnio results came back normal as well. So that was the first good news we received. They also determined that we were not candidates for fetal surgery, which is only done in the most severe cases. We learned that we are not in the severe category and we are not in the good category either. As they say we are the middle of the road with severity, which is there main focus in San Francisco.

So now we are just faced with the decision of where to deliver the baby. We know for a fact that we will not be delivering in Boise. Our options are either Salt Lake City or San Francisco. We are leaning towards SF just due to the pure expertise of the Dr's there. They also claim that babies with CDH do better at lower elevations due to oxygen levels. If we go to SF I will have to be there about a month before I am due just so I don't go into labor early here in Idaho. They want to make sure that I am there when I go into labor, because it is very important that we are at a hospital that specializes in CDH babies. So that is where everything stands at this point. We probably won't have too much more info until it gets closer. (which I am due November 3rd)

I will keep posting as we learn anything else.

Jaime

My Ultrasound Findings

I had my 20 week Ultrasound last week and they found some complications with the baby. They have found something called a Diaphragmatic Hernia. It is a condition where the diaphragm does not close properly during development. It causes a hole that allows other organs to move into the chest cavity. So, the baby's stomach is next to it's heart right now. This can cause other problems for the baby, like improper lung development and heart and breathing problems. We had another Ultrasound today with a specialist, a perineonatologist. She found that the diagnosis was correct. I had to have an amniocentesis today. They are looking for any abnormal chromosomes, if everything comes back normal the next step is taking a trip to San Francisco for more tests to determine if myself and the baby are candidates for fetal surgery. We will have some results back by the end of this week (hopefully). Then I have an MRI on Wednesday next week for them to look further into how many organs are not in the right places. Once we have more information we can make some decisions on what to do.

We are trying to remain positive and we are hoping for the best outcome possible. We are on quite the roller coaster ride for the next few months. We ask for any thoughts and prayers you can give. Please check back often for more updates. I will post any information as we learn more.

Love,

Jaime