The first 19 weeks of my pregnancy were a little nerve racking for me because I knew of all the things that could happen early on, but I tried my best to forget about being a nurse and focus on being a mommy for the first time. I was being followed by two doctors that I had previously worked with in the OB department which made me fell at ease somewhat.
I had an ultrasound at 12 weeks and everything looked great! I actually finally felt like this was for real, my dream of being a mom was going to come true. We found out we were having a boy from a blood test in the 16th week (I have a negative blood type so they had to run a few tests to find out babies blood type as well). We were still however scheduled for that 20 week ultrasound and I was so excited for my husband to see our little man on the screen for the first time. The ultra sound tech did not have anything significant to say since we already knew the sex, but we were so excited to see our precious little miracle with our own eyes! When our doctor came in, he seemed a bit serious for our familiar, joking type usual meetings. When he began talking, he said our baby's stomach and kidneys and brain and other organs looked good but that we needed to talk about his heart. He went on to tell us that our baby's heart was shifted To the right because of a mass in his chest. He looked into my eyes and said 'I'm not going to sugar coat this, I'm very concerned'. I did my best to hold myself together and get a few words out... 'what's wrong with him?'. The doctor didn't know, but told us he was going to set us up with a fetal specialist to get more answers. My husband and I made it to the elevator and I lost it. He was strong for me until we got to the parking lot and he as well was in disbelief of what we were just told. I couldn't talk about it with out loosing it and the only thing to give me any kind of comfort was to research different situations we may be facing.
This was on a Monday evening and by Friday morning, we were being seen at Cardinal Glennon for a level 2 ultrasound. During this visit, we were told that further testing would need done but CCAM was our suspected diagnosis. I have done quit a bit a research on this abnormality. I was actually glad to hear this diagnosis rather then some of the others I had seen on the Internet. I wasn't sure why, this still was a pretty scary thing and we would face a long road appts and struggles.
We were set up then with a full day of evaluation at the Fetal Care Institute for the following Monday. I had a level II ultra sound, a fetal MRI, and met with many surgeons, doctors, and nurses to discuss our plan of care. After all of our testing, they told me that Wyatt was growing well and that it appeared he had no other physical or chromosomal problems which made us very happy. They had measured the size of mass and gave us a ratio (CVR) and a lung volume %. We were told that if the CVR was below 1 and the lung volume was above 25% our survival rates/outcomes improved significantly. Our CVR was 0.55 and the lung volume was 46%. Since we would be monitored every two weeks by ultra sound to determine the CVR and watch fluid levels, this was the number we grabbed onto and really payed attention to. I must say, after this appt, meeting everyone, and getting what seemed to be good numbers/results I went home feeling relieved. I told myself that I could not dwell on the bad, but focus on the good. We were still having a baby!! : ) Yes, we were up against a lot that was especially overwhelming for a first time parents, but this would just be 'our normal'. We would still get our family, our precious little baby boy.
Over the next 12 weeks, we were monitored by Dr. Vlastos and his team at FCI by ultrasound every two weeks. We were told to treat this pregnancy like a normal pregnancy as long as I stayed healthy, which I did. Our CVR rate went from 0.55 to 0.5 to 0.35 to 0.19. We were so excited that the number continue to get further away from 1.0. The plan, at this point unless things started to change, was to deliver at St. Mary's vaginally and take Wyatt home with us as long as he could tolerate breathing on his own. We would be followed by Cardinal Glennon still and he would eventually have to have surgery to remove the CCAM with in the first year of his life. I obviously never in visioned this as the story of my first baby/pregnancy but was very happy to hear all of this ongoing, good news!! The next couple measurements began to creep up to 0.29 and then 0.4, but still no where close to 1.0. The doctors wanted to get another MRI and do an echo cardiogram, but were still please with all of the numbers. We went for our 'all day' appt and left with the same feeling that we usually left FCI with, everything is going to be fine... a few bumps in the road ahead but nothing that we cannot handle.
My appt for the MRI was on a Monday, and I received a call from Dr. Vlastos the following Monday with some results. The CVR rate was 0.46 so not too much different, but the results of the MRI hit us like a bomb... 29% lung volume. If you remember from before, they wanted this number at at least 25% (this is what the lung volume needs to be for SURVIVAL, not good function but SURVIVAL). 29 was too close to 25 for me!! The doctor ended our conversation with a prescription for two steroid injections to attempt to shrink the mass and grow the lungs that he did have.
I was again, devastated! My positive attitude of, I can handle this and don't dwell on the negatives was gone. I cried every time I tried to talked about Wyatt. Everyone kept telling me to stay positive and that the steroids would work, but I knew that there was more to this story... I knew that something wasn't right!! I called the FCI to speak with Jenny and had some questions, including am I going to get to bring my baby home with me, ever? She, being the wonderful nurse that she is, assured me that numbers are numbers and that she ultimately could not answer that question but had strong faith in her team and in Wyatt. We were going to continue with ultra sounds every two weeks and schedule another MRI in three weeks to see what effect the steroids had had. The next day she called me and said that Dr. Vlastos wanted to see me sooner then expected, to go over my questions and to do another ultra sound for fluid levels/measurements.
When we arrived for this appt, they took me straight in to do the ultra sound. Everything was moving along like the other appts did, and the US tech said she was done and would get Dr. Vlastos. While she was gone, I looked at my mom and husband and said 'the mass that she just traced on the screen looks MUCH bigger and different in shape', which they both agreed with. I was sooooo scared!!!! When Dr. Vlastos came in the room, he shocked me more then anyone in my whole life ever has... and let's face it I had been through a lot in the last 7 months. He started scanning my belly and proceeded with the normal 'here is his head, arms, legs, chest....' and then he said and this is what we THOUGHT was the CCAM. THOUGHT???? I was so confused and scared... maybe some of those people were right, maybe they were reading all of this wrong the whole time and my baby was going to be OK... maybe this was all just a nightmare. But when he continued I realized his statement had just began my real nightmare. He told us that what they thought was a cystic mass was actually Wyatt's small intestine. Wyatt actually had a congenital diaphragmatic hernia (CDH) not CCAM. There was a small hole in the diaphragm that let up his intestines very early on in my pregnancy but no other organs which is not typical for a congenital diaphragmatic hernia. On the last MRI however, they found 'fluid', which at first they tought was bigger cysts growing in the mass.... but in reality it was part of Wyatt's stomach. The hole, or hernia had gradually gotten bigger as he grew allowing part of his stomach up in to his chest cavity along with his small intestines. Dr. Vlastos turned off the ultra sound machine and stated he wanted to speak with us about the new diagnosis and that he had set up for me to meet the new team of people that would be caring for Wyatt.
My mom and husband were pretty unfamiliar with CDH and could make heads or tails of this new diagnosis... was this better or worse? All I could think of was back to my first level II ultra sound when the tech and MD told me, there is his diaphragm and it is complete and his organs are below it... and that this was a good thing even in a CCAM baby. I knew that we would know face a whole new, harder ball game. When we met with the neonatologist and surgeon it seemed like we were getting mixed news. Some people seemed much more concerned then others, some talking about whether or not the baby would live which was devastating to hear. The pediatric surgeon told your baby looks 'normal' other then the hernia. This was also very hard for us to hear, that is all we wanted, all we wished for... a healthy, 'normal' baby.
When we left FCI this time, I can honestly say I didn't know what to feel. I didn't know if we were in a better or worse situation. I guess it didn't matter, this was the situation... for better or for worse. You say those words at your wedding, not when thinking about your first, precious, yearned for baby. My husband and mom just kept telling me that everything would be OK, we would get through it together, God doesn't give us more then we can handle, it will be a bumpy road but Wyatt will be OK at the end. It's not that I didn't want to believe them, I desperately needed to believe it. I just could not face the truth, no one knew if he would be OK or not. the doctors didn't know, my mom couldn't tell me for sure if she would get her first grand child, my husband couldn't tell me we would get to come home as a new family. But I think the thing that scared me to most, the reason I couldn't jump on the wagon of 'Wyatt will be ok', was because I myself didn't know what would happen. I couldn't control anything, I couldn't fix this problem. I felt so helpless, and scared, and sad. It is very hard for me to say these things, and if you know me you know I like to have control of situations, I need a plan and the plan needs to be followed. Everyone kept asking me how I was doing, if I needed anything.... I just kept thinking is Wyatt OK, what can I do for him, will he be OK....
Ironically my baby shower was scheduled for that weekend. I knew that this would be a difficult day for me, that wonder if I would actually get to use all these wonderful gifts some day and the thought of what I would do with all of the baby stuff if Wyatt didn't get to come home. My family told me if I couldn't face it we could just 'postpone' the day. I had already been thinking about this but I felt like if I cancelled the shower I was giving up on Wyatt. I could let myself cry, I could let myself be negative, I could let myself ignore the truth at times..... but I could not give up on my baby!!! The shower went great, and I came home and put all of Wyatt's stuff away which felt good. At this point, I was 34 weeks and had my follow up appointments scheduled for every week until the doctors decided it was time for Wyatt to make his very first appearance to the world. I was in no way at a good place with everything, but I was able to get out of bed and talk to people briefly about our situation with out sobbing like a baby.
The next week was full of research/Internet time for me which is what brought me to this blog. I had started to see some mommies of CDH babies had started blogs to get feelings out and to keep family updated. I wasn't sure if this was a good idea or bad idea to read stories or even start my own. I also didn't know how my family, friends or husband would feel about it if I began documenting my own story. I realized that our story had already started, and people already knew about it I realized the more I am exposed to, the more I am ready to start our journey with our little man. I needed to bad day I had on Saturday (cried for hours in my bed in fear that God would not let me take home my baby) because I needed to realize the reality of my situation. Being able to put this all down in print is also helping me I think. It allows me to get out what is in my head with out having to say it out loud, it has always been difficult for me to speak about my feelings and thoughts. Hopefully I am right about all of this and I can help someone else through this process or someone can help me with some of the very difficult moments I have ahead of me.
This was alot of information for my first post, but I needed to get this out and up to date. We have our next appointment on Thursday with FCI for an ultra sound. I hate to think this way, but one positive thing about all of this is that I get to see Wyatt's cute little face alot more often then moms that are having healthy babes. I am going to do my best to keep this updated up to delivery and then with any updates from the hospital. Please feel free to comment, anything could help!!
Side note, as I am finishing up this post Wyatt has the hiccups (seem to be much more frequent in the last couple weeks). It is the coolest feeling to have a precious little baby inside of you!!! But it also scares me so much in the last couple weeks because of the uncertainty of what is to come when he is no longer inside of me. Until next time.......
