Sunday, February 5, 2012

Last week

I'm finally going to attempt to describe how last week went for us. I was sick during the weekend and still not feeling good when Monday arrived so I took the day off of work. Besides getting packed for our trip all I did was sleep until Ryan got home. We quickly grabbed our stuff and were on our way. The trip went fast, we picked up my mom who was in Fargo because my grandma just had back surgery the day before. We made it to our hotel around ten, Ryan's parents were already there. It was so nice to be with family again. I still wasn't feeling well and I was nervous about what the next few days would be like. I really had no clue what kind of appointments I had. I knew I would have an ultra sound, fetal echo, and I was told we would be taken on a tour but I didn't know which days we would be doing what or when.

The next day we met my aunt at the hospital and headed up to the maternal fetal medicine floor. Soon after we were introduced to Dr. Thomas and led into a room with a large table in it. We all sat down and the Dr. began talking to us. To my understanding he is in charge of the neonatal section of the hospital or something like that. He explained to us what Landon will go through after he is born. We asked some questions and then we talked a little bit with the social worker who was there and another woman who kind of oversees cases like Landon's. They were all very friendly and easy to talk to.
That was all we had the first day, it went pretty fast and I was glad because it was later in the day and I was tired from not sleeping well the night before. It was refreshing to be somewhere again where Landon isn't talked about like he is abnormal. These people deal with different everyday so it is their normal, just as it has become ours.

The next day our appointment was in the morning. I woke up at 2:30 and couldn't get back to sleep because my sinuses were so out of whack and I couldn't breath well. I was very excited to have an ultra sound done and hopefully get another 3D picture to take home. I was also hoping that our family would be allowed to come to the ultra sound with us. They said that would be fine so Ryan, our moms, and my aunt all crowded into the ultra sound room. It was really special getting to share that moment with all of them. We were told that Landon is now up to 3Ib 5oz. I almost couldn't believe it! He is growing so fast! It is ironic because the doctors always tell me that I am very small and here I have this big baby boy growing like crazy inside of me :) That made me very happy and I was even more thrilled when she turned on the 3D and tried to get some good pictures for us. It is so amazing to be able to see his face. He is so beautiful and in one of the pics we got he looks like he's smiling :)

After the ultra sound I had a fetal echo and then we were led into a room to talk with Dr. Shaunti again, this time with our family. She introduced herself to everyone and then dove right in, she began with the basics about what she does and explained Landon's condition, but I could tell this time was different then the last time we talked with her. She was going into more detail and giving it to us more straight then last time. I know this is because it would of all been to much for us to handle at our first visit, we were still processing the news, but now we are more prepared and we want the details. I can't begin to explain everything she talked to us about because it is so much and so complicated, but she explained to us that the right side of Landon's heart is hardly developed at all. She told us that after he is born we will get to hold him a couple seconds and then he will be taken to the NICU. This was sad for me to hear because the day before the Dr. told me I would have a couple min. with Landon, but like I said Dr. Shaunti was giving it to us straight and I appreciated that. She told us that Ryan will be able to go with Landon to the NICU which we were both glad about. Once in the NICU Landon will have a feeding tube and an IV placed in him. He will have several tests run on him so that they can look at his heart more closely. The big thing is seeing how his coronary arteries have been affected. If they have been then there will have to be more measures taken then just the one surgery to fix that. They will for sure be performing open heart surgery on him the first week to open the valve so that blood can get to his lungs. She explained to us that this is just a temporary fix. They have to do things gradually because the lungs cannot handle a ton of change at one time. His second surgery will be when he is 3 to 4 months old. She told us how important it is that he not be introduced to new people before his second surgery because he is so susceptible to sickness. She told us that a small cold is nothing to fool around with for babies with his condition. If we wait a day to take him in to the hospital it could be too late for him. It sounds like if a situation does arise where he has some complications or gets sick we will need to bring him back to Minneapolis right away. Bismarck will be fine for his normal checkups and things, but he may still need special care that can't be found in a normal hospital. She told me again that they want me to get to 39 weeks in my pregnancy and then they will want to induce me because it could be dangerous for him to be in the womb after that. She told me that after 36 weeks they will want to keep a very close eye on me. If there is news of weather complications they will want me to come into the hospital right away because an ambulance can get through anything except bad weather. She explained to us how important it is for Landon to be born in a hospital that has the medicine (prostaglandin) that he will need to keep the valve open in his heart. Without this medicine he won't be able to breath and at the least will suffer brain damage. She told us that helicopters take at least 2 hours to get off the ground and that's too long for a baby with his condition to wait. She told us there are only a few hospitals in the country that carry this medicine because it costs 2,000 a bottle and just expires in most hospitals because the situations where it is needed are so rare. She told us that out of all of the heart defects that they treat on a day to day basis they only have about 2 a year with exactly what Landon has. That really shocked me, because I know that people fly in from all over the country to get treated there. We are very fortunate that we are so close to a hospital that can care for Landon, even though 6 hour drives don't seem overly close. We talked a little more and asked some more questions. I was so impressed by her willingness to listen and answer all of our questions. Her beeper went off once and I was expecting her to tell us she had to be somewhere else, but she just stayed and kept talking with us. Knowing that she really cares makes it a lot easier to hear what she tells us. These aren't like other doctor appointments I've had where you wait for 45 min and maybe get to see your doctor for 15. They know that you can't rush through situations like ours, we need the extra time. That's why it seems like they tell us the same things over and over again, because they know news like what we hear takes time to process and fully understand. I still can't tell you that I understand everything that is wrong with Landon's heart or what they are going to do to fix it, but I know that God has provided us with the best care and for that I am SO grateful.

After that we met with Dr. Thomas again and he began our tour with the delivery room. then he took us to the NICU, I was shocked that we were allowed to go in and actually see the babies and everything. He took us over to certain ones and told us that Landon will be on a machine like this or a feeding tube like that. I have to be honest I don't feel like I really grasped what was going on, I was just so taken by these tiny babies in their little incubators, fighting to live. It was hard for me to hold back the tears, knowing that my baby boy was going to be brought here. Each baby had someone assigned to it though, watching it and taking care of it the whole time. I think that's going to be one of the hardest times for me because I'll be recovering the first couple days he is in the NICU. I'm comforted knowing Ryan will be allowed to be with him the whole time, but it's so hard knowing I won't. From the NICU he will go to surgery and then be taken to another floor where he will stay while he's recovering. This room has a bathroom and a pull out bed so I will be able to stay with him 24/7. I know that will be so exciting when that day finally comes. There were lots of rooms on different floors and it all went so fast I know I wouldn't be able to find my way around again, but the tour really helped. It is nice to be able to picture where we will be and the new children's hospital is designed so beautifully. Every floor is bright and cheerful with safari themes, I truly do feel so blessed that Landon will be treated at such an amazing place. The second day took around 4 hours, we got some lunch together, said our good-byes and headed home. I know these next four weeks are going to go by so fast.

I'm sure there is more I could write, but I will just leave it at that for now. Thank you everyone for remembering us in your prayers as we travel and try to process everything. God has been so faithful to us and we will continue to keep you posted.

Landon's Momma

1 comment:

emmy said...

Sending prayers.