The results of my MRI are in . . ..

Just got off of the phone with my perinatologist. He said that the MRI looked just as he thought it would. The CCAM is measuring about 2.7 cm x 1.5 cm which is good. He has seen and dealt with much larger CCAMs in his experience. Plus, it hasn't really grown at all since my last ultrasound with him about two weeks ago. Apparently, according to him, the growth of the CCAM typically stops or severely slows down around the 28 week mark. Only 6 weeks to go! He said that there was good lung tissue there in the right lung and that the CCAM was pushing up against it slightly but that was to be expected. The CCAM also appears to be microcystic in nature (Type III). At this point in time, he does not think that I am a candidate for surgery in utero. The risks definitely outweigh the rewards. He said he'd have to consult with the pediatric surgeon again on Friday (to be sure) but I have already met with her and I'm pretty positive based upon her reaction that she will not be an advocate for that surgery. This is excellent news! It is something that I've been worrying about since it was first mentioned.

Other than that, I have a follow up ultrasound appointment scheduled with him on January 4th. He said that he would provide me with my CVR (CCAM volume ratio) at my next appointment. Basically, A CVR less than or equal to 1.6 suggests that the risk of hydrops developing is low. A CVR greater than 1.6 suggests an increased risk of developing hydrops. This number is calculated by taking the length of the CCAM x Height X Width x 0.52/head circumference. Based upon the size of my CCAM, he expects my number to be small. He even said that based upon the size, he expects that there is no reason to think that everything will turn out favorably with this baby. Even though most of this information was already known, it is always nice to have confirmation and it was definitely a relief to hear!

Tomorrow I have my regularly scheduled OB appointment and then we will be ready to enjoy a few weeks off with NO appointments. Hopefully I can enjoy the holidays with my family and take a moment to step away from the concerns that have been plaguing me these last few weeks. When I get back, I will be well rested and ready to take on whatever is thrown our way.

Beautiful people. . .

 

 

Saw this today on a friend's blog and found it to be so appropriate. When I start to doubt myself throughout this whole process, I just need to reflect and realize that this process will only make our family stronger. We are definitely changed as a result of our peanut's diagnosis but hopefully our our struggle will only promote positive growth for our family. 

 

Fetal MRI

This morning I finally had my fetal MRI. Seeing as though I'm claustrophic, I've been dreading this day. I've experienced an MRI before (for a pinched nerve/bulging disk) and felt like the walls of the machine were closing in on me. Fortunately, it only lasted about 20 minutes that time around so it wasn't so terrible.

Upon arriving at my appointment this morning, the doctor went over the all of the necessary instructions and had me fill out the appropriate paperwork because I'm pregnant and opting to have this MRI. She then explained that this experience would probably be much more pleasant than my last one because the tubes have gotten slightly larger. Yet, on the other hand, the magnet has also doubled in strength. Additionally, they now have the ability to project images (of mountains or other serene landscapes) on the walls of the MRI room (not the inside of the tube itself) which would promote a peaceful environment/mindset. It would last slightly longer than my last MRI (about 30-45 minutes). Additionally, instead of going in head first, this time they had me go in feet first so that my head was at the end of the tube and within eye sight of the opening. What she failed to mention was that after laying on the table, they would strap a belt around my chest and cover me with a heavy mat/shield on my chest. Then, seeing as though they wanted a good look at my uterus, they would have me do the entire MRI with my arms above my head instead of at my side. When they first began the exam, everything was fine. They had covered my legs/feet with a light sheet to ensure that I was warm and comfortable. That's when he began asking me to hold my breath. "Deep breath in. Exhale. Hold your breath. . ." I began counting the clicks and pounds of the machine. By the fifteenth click, I was struggling to hold my breath any longer. He barely let me catch my breath before he began again. After a few of these repetitions, I could hear him say though my earphones, "Are you having trouble holding your breath that long?" Ummm, yeah. Ya think? You aren't letting me take another breath after my exhale before holding my breath. The MRI went on for what seemed like forever. They moved the table back and forth throughout the tube. The further in they put me, the tighter I felt my chest get. After about 45 minutes, my shoulder started to feel a sharp pain. I was very uncomfortable but terrified to move. I just kept telling myself to suck it up. The MRI would be over soon. It had to be over soon. I kept waiting and waiting for him to tell me, "Almost there" yet I wasn't getting any sign that the end was near. I started getting more and more anxious. My whole body started to break out in a sweat and I had to tell myself to take more deep breaths. The baby had started getting restless at this point and I was much more in tune with her little jabs and kicks. I could feel the palm of my hand starting to draw tighter and tighter around the little panic button that he had given me in case I needed to get out of the machine. Finally, I couldn't hold it anymore. My shoulder was throbbing. I squeezed the button and heard the man's voice through my headphones. "You okay?" I told him that my shoulder was aching and I needed to come out to adjust it for a minute. It took him a minute but he finally moved me out of the machine and told me that my doctor said that they had everything they needed. Removing the chest pad and belt felt like a huge weight had been lifted off of me. When I finally looked at the clock, I realized that I had been in there for over an hour. No wonder time had seemed to be moving so slow.

After exiting the MRI room, the doctor was there to meet me outside. She didn't have much new information to tell me. She wasn't in the room to witness the entire MRI but she said that from her initial scan, she believed that it was a type III CCAM in the right lung. She did not see any signs of hydrops at this time. However, she confirmed that she would need to look further at my MRI to perform a more in depth analysis and write up her formal report. It would take about two days to get those results back. Hoping that this report provides us with more information as her breakdown today didn't provide us with any new information. I guess I will know more in the next day or two when I stalk my perinatologist for her report. : )

Our First Visit with the Pediatric Surgeon

Since my last blog, I feel like I've become a lot more informed on my little peanut's condition which has allowed me to gain some comfort with our situation. My mom had come across the blog of another CCAM mom who is only a few weeks ahead of me and her little girl was also diagnosed with a CCAM just a few weeks before me. After reading her blog, I felt like I was reading my own story. In addition to the little girl that they have on the way, her and her husband also have a three year old little girl. It was just all too familiar. Not knowing what to expect, I commented on her blog to let her know how I had come across her story and asked her if she would like to correspond regarding our similiar pregnancy situations and concerns. She responded the next day, inviting me to email her further. Of course I did just that and we have been corresponding through email and messaging ever since. It's always odd meeting people over the internet but there are some people that you feel like you have an instant connection with. In this case, it has been so comforting to me to talk with someone who is going through the same feelings I am and can relate to our situation and the fears that accompany it. Additionally, she is a few weeks ahead of me and has been able to provide me with lots of resources and support groups that she has encountered in her research. . .two of which she came across on Facebook. Whoever pokes fun at social networking has no idea how important a part of my life it has become. With multiple cross country moves thanks to the military, we've been able to receive daily updates on family and friends. And now, I've made connections with several other women all over the world who are pregnant with babies who have CCAMs. Some have already given birth and underwent surgery and have pictures and stories to share. Others have opted out of surgery based upon their experiences. It's interesting (and sometimes a little scary) to hear the different scenarios but mostly, I feel like it is raising my awareness to the different possibilites that we may encounter.

Additionally, since my last blog, I was instructed by my doctor to give a 24 hour urine test sample. The test results came back on Tuesday and were in the normal range with regard to protein. They were a little on the high side but still within the normal range. My OB called to tell me that they would use that as my baseline test and would be testing me again in a few weeks to ensure that my levels had not doubled or shown any significant jump that would insinuate preeclampsia. As I believe I mentioned previously, women who are pregnant with CCAM babies are more likely to get preeclampsia. Additionally, since I've already had preeclampsia with a previous pregnancy, I'm also at further risk to get it again. That being said, it's nice to know that my doctors are all watching me closely to ensure that it does not go undetected as long as it did with my first pregnancy.

Today, Tim and I went for our first visit with the pediatric surgeon, Dr. Marion Henry. We were a little thrown off when we arrived because we were expecting to meet with Dr. Romeo Ignacio. After speaking with my perinatologist, Dr. Richards, the week before, he had made me confident in Dr. Ignacio's surgical capabilities and experience with CCAMs. Similarly, when I met with one of my OBs on Friday, he had also reassured me that Dr. Ignacio was "the best" and he would trust his own family's care in Dr. Ignacio's hands. While I was a little surprised by Dr. Henry's introduction, she did reassure me that her and Dr. Ignacio were the only two pediatric surgeons at the hospital and they hold monthly formal meetings with the Fetal Assement Unit (also known as Maternal Fetal Medicine) doctors. They discuss all of their patients across the board in order to ensure that all four of them are on the same page regarding these patients. That also doesn't account for the dozens of interactions that Dr. Ignacio and Dr. Henry have on a daily basis working out of the same office. I felt a little more comfortable after hearing that all four doctors would have a complete understanding of our journey prior to surgery. In addition to Dr. Henry, we were also introduced to Margie Gabriel who was a Pediatric Surgery Physician Assistant to Dr. Henry as well as another resident.

Unfortunately, since I have not had my MRI yet, there wasn't a ton of information to discuss with the pediatric surgeon and her physician assistant. While the initial ultrasound that our perinatolist conducted had provide quite a bit of information, it can not be considered totally reliable. The MRI will provide much more concrete evidence about the size of the CCAM and possibly the type of CCAM which will in turn define our course of action. I asked her if this would be our only meeting prior to surgery, which I was concerned about considering we didn't even have the results of my MRI yet. She assured me that I could schedule an appointment to meet with her as much as I needed to feel comfortable. She would definitely want to meet with me post MRI (more along the January time frame or so) since we would have a better understanding of the direction in which things were moving. She said that some people felt comfortable only meeting with her that one time while others felt more reassured with frequent meetings. She was comfortable with whatever I was comfortable with. Additionally, she presented me with her and her assistant's direct phone lines and email addresses in case I had further questions that needed answering.

Here are the results from the Q&A session that I conducted with the pediatric surgeon:

Q: At the 20 week ultrasound when the baby was originally diagnosed with a problem, the doctor had mentioned pulmonary sequestration. However, our perinatologist was convinced that it looks like a CCAM. What is the difference between the two and how are the they treated differently?

A: She didn't quite explain the difference between the two. Although she did explain that they both fit under the umbrella of CPAM (Congenital Pulmonary Airway Malformation). From my understanding, the two are very similar. A pulmonary sequestration can be introlobar (meaning inside the lung) or extralobar (meaning outside of the lung) but they also have an additional blood supply (usually from the aorta or other arteries). The surgeon did say that most pulmonary sequestrations are introlobar. Unfortunately, since they are in the same family of malformations as the CCAM, they are often hard to distinguish (and sometimes even misdiagnosed) between the two through ultrasounds or MRIs. They are easier to decipher after the baby is born but even then, it is sometimes difficult to tell which it is until they actually do the surgery to remove it. Either way, they are treated similarly with regard to surgery. In addition to pulmonary sequestration and CCAM, she also mentioned that Congenital Lobar Emphysema (which was also mentioned at the 20 week ultrasound) is another malformation that can also fit under this umbrella. However, she doesn't believe this to be the problem because the lesion occurs on the right lobe with is not characteristic of the emphysema.


Q: What is the CVR? What does this mean?

A: Unfortunately, the surgeon did not seem familiar with this term (or was confused as to what I was speaking to) which made me a little skeptical. Every information site, blog, group in which I've researched has always mentioned their CVR, which is provided by their doctor. The CVR, according to the web, is a CCAM volume ratio obtained by dividing the CCAM volume by head circumfrance to correct for fetal size. In other words, it seems to me that it is comparing the size of CCAM with comparison to the size of the overall fetus. Basically, as long as the lesion seems small with regard to the rest of the baby, it is not as much of a concern. However, as the baby grows, the lesion will continue to grow with it. If it continues to be small and manageable, they will continue to monitor it's growth until birth. If it growing larger and larger and starts to impede upon the growth of the heart and other organs, it becomes much more of a concern and more frequent ultrasounds will become necessary.

Q: Are there currently any signs of hydrops (a sign of heart failure)?

A: No, none yet. It's still really too early to tell though. She did not seem too concerned that hydrops would be a problem as it is more of a rare occurence with CCAMs.

Q: Are there any symptoms/signs of hydrops that I should be aware of? It just makes me nervous because my ultrasound appointments are every 4 weeks or so. I've noticed that a lot of the women in my groups are being monitored weekly. What happens if something goes wronge between my four week ultrasounds?

A. No, unfortunately there are not any symptoms that you will be able to detect. This early in the pregnancy, it's going to be too difficult to detect hydrops through the ultrasounds. Appointments every four weeks should be sufficient. In these appointments, we will be looking specifically for any extreme growth that may cause hydrops.

Q: Dr. Richards had presented the idea that I may be a good candidate for surgery in utero. This made me a little concerned (besides the obvious concerns) because it has to be conducted prior to 26 weeks gestation. I'm currently at 21 weeks and will be 22 weeks when the results of my MRI are returned.

A: She seemed a little confused as to why this option was even discussed with me at this point. It seemed to be getting a little ahead of ourselves. The probability that I would require this surgery is miniscule. However, they are accustomed to working on tight turnarounds and in the event that this surgery would be required, they can set it up within a week's turnaround. Additionally, in the event that I would require this surgery, I would most likely be referred out to UCSF which is one of the top hospitals in the country/world for CCAM surgeries.

Q: What specific information will the MRI provide? What can you tell from this?

A. It may possibly be able to to tell us what type of CCAM we are looking but may not. It will definitely give us a more accurate idea of the size as well as the placement with regard to the rest of the organs.

Q: One of my CCAM mommy friends is seeing a pediatric cardiologist for an echocardiogram? Is there a necessity for me to see one? What additional information would that provide us?

A: No, we would not send you to a cardiologist unless we thought that the lesion might start growing to the point that it could possibly start crowding the heart. We won't know that for sure until we get the MRI and continue to monitor the growth of the lesion. So if you would be referred out for an echocardiogram, that would not occur until later in the pregnancy.

Q: Do you recommend fetal surgery? If so, why? What are the risks associated with it?

A: Yes, eventually. If the baby is born and is asymptomatic, we will have a check up after 6 months and then begin to think about scheduling the surgery. However, if the baby is born in respiratory distress, surgery will be immediate after birth. Additionally, whether or not the baby is born asymptomatic or not, we do recommend surgery at some point to remove the lesion which will ensure less risk of infection and/or the potential for cancer in the future.

Q: Will I be able to go full term in my pregnancy?

A: Yes, we hope to see you go full term. A CCAM does not necessarily mean early labor unless the rate of growth suggests that it is necessary.

Q: How many CCAMs have you dealt with? What was your success rate?

A: She said that they see about five a year. This year alone, I would be their sixth. There success rate is excellent. With the ones that were diagnosed this year, most of them have not had their surgeries yet as they are not within that six month window. One was supposed to have surgery this week but was forced to delay due to illness.

Q: What does the surgery entail and is there a less invasive option?

A: There are two types, the open incision surgery and the other which is less invasive and usually leads to a quicker recovery time and less scarring. They will not be able to determine which surgery our little girl will require yet. The less invasive option will not be available to us in the event that she is born under respiratory distress and needs surgery immediately after birth. However, in the event that she is asymptomatic at birth and does not require surgery until 6 months or later, the chances become better that they will be able to operate using the less invasive technique. Here is an article that a friend of mine linked to regarding the different techniques: http://www.columbiasurgery.org/news/si/2008_mas.html

Q: Will any special precautions need to be taken between the time of birth and surgery? For example, will she be more prone to respiratory issues? Will we need to stay restricted to the house as much as possible? Would her older sister be able to attend daycare, knowing that they become more susceptible to germs?

A: Obviously daycare can assist in bringing more germs into the mix. However, there aren't any other precautions that we will need to take.

Q: After the surgery, how will her respiratory function be?

A: Should be normal unless there are any unforseen complications.

Q: Does the lung regenerate? When you remove the lobe, will a new lobe grow in it's place? Will it function with the rest of the lung?

A: The lobe does not regenerate. However, the remaining lobe will continue to grow and expand to fill the empty portion of the cavity.

Q: If she doesn't show any symptoms when she's born, or the CCAM shrinks, would you still recommend surgery?

A: Yes, eventually. Otherwise, it can lead to a more likely possiblity of infection and/or can become cancerous in the future.

Q: What kind of recovery time are we looking at post surgery?

A: Very, very good. Babies are very resilient and often bounce back from surgery a lot faster than adults. Best case scenario, the baby would be required to stay in the hospital for four days post surgery. For two of these days, it is required that they have a tube inserted to drain the liquid from their lungs. The additional time is for observation. The stay could potentially last up until a week.


Our next major milestone will occur on Monday, 12/10 when I will have my pediatric MRI. I'm not exactly sure how long it will take to receive the results but I plan on stalking my perinatoligst until I hear something. ; ) LOL! I'll be sure to update my blog within a few days of the MRI when I know more information.

"I'm Okay. Just Dealing with a Troubled Mind. . . "

The last blog entry was dedicated mostly to introducing our family (for those readers who may be encountering this blog through a random Google search) and the health issue that our unborn daughter now faces. I provided a lot of in depth clinical type background into our circumstance so I've decided to dedicate this separate entry into most of what I'm currently feeling. Writing has always been a source of solace for me and hopefully this will also help me sort out some of the emotions running through me that I continue to repress.

Initially, after our first appointment at the 20 week anatomy ultrasound, I remember feeling disappointed and angry by the loss of innocence that accompanied the ultrasound. As I had mentioned in my previous blog, no one goes into these ultrasounds thinking that they will hear anything but good news. . .until they do. From here on out, every ultrasound that we attend, we'll be entering hoping for good news but expecting to hear the worst. It's how we prepare ourselves and protect ourselves from further heartache like that we encountered at that 20 week appointment. And unfortunately, it doesn't just end with this child. This self protective nature is sure to continue with any future ultrasounds we encounter with children down the road.

Outside of the anger and disappointment, I have developed a fear of attachment to this child. While the statistics are still favorable, there is always the possibility that this sweet, innocent baby may never make it into this world and that even if she does, there is a long, rough journey ahead of us. For this reason, my husband and I have discussed names for the child, but I find myself unable to commit to anything. Besides what name seems significant and special enough for a child who may end up being your miracle baby? Additionally, I look at my 2.5 year old daughter and I start to wonder what this sweet girl will be like. Will she be a towheaded little baby with chubby cheeks like her sister? Will she be overly dramatic, stubborn, and animated like her older sister? Or, will she be much more reserved and laid back like her daddy? As soon as I start to wonder about these things, I find myself turning away from these thoughts. We just need to get through these next 20 weeks successfully before we start to think about the future. I feel guilty for feeling this way. I know it's a coping mechanism but it seems natural for a parent to want to wonder about the future so it makes me upset when this protective instinct kicks in and deprives me of these moments.

Next comes the feelings of worry. Despite the obvious feelings of worry that accompany what the future may hold that are outside of our control, I have also started to worry about the variables that are in my control. Let me explain. Part of the responsibility of being a parent is making decisions for someone who may not be able to make decisions for themselves. When they are born, it's whether or not to breastfeed? When do we start them on solid foods? Cloth diapers or disposable? Circumcision or not? To vaccinate or not? Cry it out or not? These may seem like easy questions to answer for some. For others, like myself, you are always second guessing your choices and whether or not it's the "right" thing to do to ensure that your child thrives in the best possible environment. And if you're anything like me, you may have spent a lot of time reading books or researching these answers on the internet, only to find out that there is no clear answer. Just a ton of opinions floating around. It's a feeling of uneasiness that we may never outgrow and as the children get older and the decisions  become more dire and not necessarily as easy to answer. We are helping to choose the fate of someone who can not advocate for themselves. And unfortunately, as they do grow older and we do become more comfortable persuading their choices in life, most tend to become free thinkers and less likely to take our advice based upon our experience. Back to my main point. . . I keep wondering what this meeting with our pediatric surgeon will entail next Thursday. Will he believe that surgery in utero is the way to go for our specific circumstances? When the time comes, will I be able to properly weigh the risks versus rewards and make the right decision? Will I have any say in the hospital that we are referred to (based upon military insurance) and if so, will I pick the best one? And if the baby should not require surgery in utero, and makes it full term, will I have a say in whether or not the operate on the baby immediately after birth or further down the road? If so, will I make the right decision?

Finally, comes the feelings of defensiveness and protectiveness. I have shared the CCAM diagnosis with VERY few people at this point. Anyone who knows me personally knows that this is not typical of my personality. I wear my heart on my sleeve and if anything, could be classified as an oversharer. While part of me wants to tell the world and ask all of my prayer warriors to make us a part of their daily ritual, the other part of me says that Facebook is not the place to make our business public knowledge. Part of the reasoning behind this is that I feel protective for this innocent baby. I don't want people to think of her any differently or as being imperfect. She may not be perfect by medical standards but she is perfect to me. . . exactly the way God intended her to be. I also don't want sympathy from anyone. Support? Yes, of course. But I definitely don't want insincere sympathy. I don't want feelings of awkwardness as who truly knows what to say to someone who is dealing with a health issue unless they have been there? I also don't want anyone to overcompensate and tell me that everything is going to be fine and that this baby is perfect. First, that is false hope and you are not a doctor. We are aware (or at least researching to gain awareness) the risks associated with everything. I appreciate the attempts at optimism bu what will be will be and we can only continue to deal with this one day at a time.

These are all issues that have plagued my mind throughout the last three days. However, when someone asks me "How are you feeling?"."What are your concerns?" or "Would you like me to set it up so that you can talk with someone?", I'm reluctant to share. Are these natural reactions? Will I be judged for how I'm feeling? Perhaps I can't bring myself to say them out loud but at least I will always have this blog to write freely and work out some of the inner turmoil that troubles me. It may also provide some incite to my family so that when they ask me these questions and I answer with a simple, "I'm okay. Just dealing with a troubled mind", they will know my inner thought and not have to pry further. And for anyone dealing with a CCAM and encountering this blog by chance, they may also feel validated in their own feelings.
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Our Journey Begins

On November 27th, my husband and I attended our 20 week ultrasound appointment. I was so excited when I finally had the opportunity to schedule that appointment that I kept referring to it as my "gender ultrasound" which my doctor was quick to correct me on. It was the "anatomy ultrasound" first and foremost. In my mind, that was just a formality. No one expects to go into this ultrasound and hear anything other than positive feedback about their baby's health. For fun, I had even started a poll on Facebook asking friends and family to put in their guesses as to whether the baby was a boy or girl. I remember people posting that they hoped that it was a boy (since we already have a little girl) but that they would be happy with a healthy baby. Of course it was a healthy baby, right? Despite the trials we went through during my first pregnancy (preeclampsia, kidney stones, gall bladder attacks), we already had one perfectly healthy baby. Plus, this pregnancy seemed to follow my last very closely. I felt comfortable going in to this ultrasound.

I should also mention that while I was excited about the "gender ultrasound", we had not planned to not find out the gender of the baby that day but instead asked the ultrasound tech. to provide the sex in an envelope which we would pass on to a baker so that we could do a gender reveal photoshoot the following day. . .my husband's birthday. As a result, she appeased us by turning off the monitor while she was performing the ultrasound and taking her measurements. She did not speak the entire time during the ultrasound which was a little unnerving. However, when she finished her exam, she asked us if we would like her to turn on the monitor and only concentrate on the face and hands and such since we had brought our 2.5 year old daughter with us. Of course, we were thrilled to see our newest peanut up on the monitor. Even my daughter kept referring to her as "sister" and we had not even received the gender results yet. While we didn't end up finding out the gender at the "anatomy ultrasound", that IS the day that we learned that there was a complication with our sweet baby. The ultrasound tech. told us that she needed to run the exam by the doctor so that he could take a look at all the measurements and confirm that everything looked okay prior to sending us home.

I just remember the doctor walking in and pulling up a stool. He said, "I want to show you something" and my heart immediately dropped. Seeing my reaction, he said, "No, no. As far as things that I have to talk to people, this is one of the least worrisome." While that was a little bit of relief, I was still hanging on his first words. He opened up one of the pictures from the ultrasound and said, "This is the chest cavity." Immediately, my mind turned to heart problems. My mom and grandma both had suffered from heart disease and had endured bipass surgeries so I was sure we were dealing with a heart issue. He continued on. "This is the lung. See that dark white over there. That is not supposed to be there. I think that we are looking at something called 'pulmonary sequestration' which just means that this is a benign mass that is growing with the lung. It's actually lung tissue that is not functioning. There is also the possibility that it could be 'congenital lobar emphysema' or 'congenital pulmonary airway malformation' however I really think that the 'pulmonary sequestration' is the most likely scenario. I'm going to call your OB and she'll put in a referral for you to see a Perinatologist who will be able to provide you with a better idea of what you're dealing with." Upon finishing, he just stared at us blankly, waiting to see if we had any questions. I was in such shock that the words coming out of his mouth didn't seem to make any sense to me. It was all a blur. How could I possibly ask any questions when I didn't even understand the terminology? I had him write down the medical terminology for us and began to plan my research attack for the ride home. My husband and I both walked out of the ultrasound very quiet. I remember thinking to myself, "Did I do something wrong? Was there something that I didn't do that I should've done?" These are obviously very painful questions to ask yourself when you already know that there is nothing you can do NOW to change the outcome.

My husband had to return to work that day so I drove myself home, all of the while fighting back the tears. I did a lot of research the remainder of that day but still couldn't make sense of all of the information that was presented. My first response was to contact some of my nurse friends (one of which was a pediatric nurse) and ask them what they knew about "pulmonary sequestration" and if they could explain it in lamens terms. That proved to very helpful to me. While they may not have remembered exactly what it entailed, they were able to reference their old text books and ensure me that they believed this to be something that could be treated with surgery and that most babies go on to lead a totally healthy and normal life. These two friends were my angels that day. At a time when I was scared and felt helpless, they were able to provide me with a tiny bit of strength and reassurance and for that I will be eternally grateful to them. Based upon my research, I began forming questions that I would ask the Perinatologist once I met him. Will he/she have to have surgery immediately after birth or is this something that could occur later on in childhood? How dangerous is that surgery? What is the likelihood that this child will go on to lead a normal life? What are other associated side effects? What is our plan of attack? How will my delivery go? Will any extra precautions need to be taken?   By the end of the day, after explaining the circumstances to my mother and close friends, I was totally drained. I had cried so many tears and had so many unanswered questions. My mind was unable to shut off.

The doctor referred us to a Perinatologist at the naval hospital who we met with two days later (November 29th). When he walked into the room, the first words out of his mouth were, "So how freaked out are you?" That was putting it lightly. He started out by saying that he suspected it was a CCAM (a term that had not even been mentioned two days prior which really threw me for a loop) and that there were two different types that he would be looking for: the first would be mostly liquid which would be the most preferable out of the two. These type could potentially be drained and had a 90% survival rate. The second type, which is mostly solid, was a little bit more difficult, yielding an 80% survival rate. He also went on to say that CCAMs aren't "that rare". I would be the sixth case that he has seen in his entire career. Therefore, "it wasn't one of those things that a physician can go his/her entire life only encountering one case." Somehow, the fact that I was only the sixth case he had encountered was not very much of a relief to hear.

After starting my ultrasound, he confirmed that the mass looked to be solid based upon the color and he guessed that it would be classified as a Class III CCAM. He measured the mass and said that it was 2 cm by 1.5 cm. When I asked if that was large, he said that it is big but he has definitely seen bigger. This CCAM encompassed 25% of the baby's chest cavity. The only thing that did provide comfort was the fact that he kept telling me how good everything else looked. "This is a beautiful baby", he repeated over and over again. The heart looked great and strong and appeared to be in the right place. Apparently, with the growth of a CCAM, the heart can sometimes become crowded which in turn affects it's growth. The spine and diaphragm all looked good as well. The left lung looked great and the right lung even showed some good lung tissue. Nothing appeared to be impeded by the CCAM. He said that he wanted to order an MRI for me which would provide us with more definitive answers. Additionally, he said that I might be a good candidate to consider undergoing surgery in utero. It was a little premature to determine that at this point in time. He would have to consult with the pediatric surgeon (whom I have since scheduled an appointment with for next week) and see his thoughts on the risks versus rewards. Apparently, only six hospitals in the country preform this surgery in utero. Most of them are on the east coast, I believe. The closest to us is UCSF which is where he would most likely refer us to in the case that we decided to go this route. The thing that terrified me most about this surgery is that it HAS to be done before 26 weeks. I'm currently 20 weeks and 2 days so the timeline was very unsettling. On top of that, the Perinatologist told us that while they are able to do amazing things with these surgeries now and days, there is still a 37% chance that they can break your water during this surgery. We'd be having a baby right then and not knowing how underdeveloped it would be. On the other hand, if we wait, they would continue to monitor the CCAM's growth and make sure I don't develop something called "hydrops" which is ultimately signs of heart failure in the baby. I asked the doctor if anything could be done if the baby develops hydrops to prevent heart failure and he said that they can give the baby steroids. However, after further reading, it looks like hydrops is pretty untreatable.

 

During our appointment, the Perinatologist did reference another CCAM case that he had recently dealt with. This was different in that it consisted of twins, one of which had a CCAM that was large and encompassed 50% of the chest cavity and the other that was completely normal. They did not want to operate in utero because then they would also be putting the healthy baby at risk so they waited until the babies were born. Luckily, while monitoring the baby's CCAM through frequent ultrasounds, they were able to tell that the CCAM had shrunk significantly as the baby grew. They were born without complications and apparently the twins are currently nine months old and the one has not had surgery yet to treat it's CCAM.

 

Since our meeting with the Perinatologist on Thursday of this week, I started having sharp pains in my bladder that felt like the baby had lodged it's foot in it. . .only it lasted for hours. I started reading online and decided that it could possibly be a UTI so I made an appointment with my OB to have a urine test taken. It came back negative for a UTI but the doctor asked me if I was familiar with the signs of preeclampsia. I did suffer from preeclampsia with my first daughter, and had to be induced 3.5 weeks early, so I was very familiar with the symptoms. He asked me if I had experienced any headaches, which I have, so he ordered me to do a 24 hour urine test. Apparently, to my surprise, women with CCAMs have a higher risk of developing preeclampsia. Great! I thought I was in the clear with this one. Guess we will find out more when I turn that in on Monday.

 

Other than that, just waiting to talk to the pediatric surgeon next Thursday and have my MRI done on the 10th. In the meantime, the doctor suggested that I talk to a social worker in the NICU to have someone to discuss my feelings and stresses with. I'm not opposed to it because I'm guessing that we'll be getting to know the NICU pretty well over the next year. It's just a little odd for me because I've never talked with a therapist before EVER and now I'm going to be talking to her about something that I'm still processing. The only thing easing my troubled mind is that this woman may have worked with other CCAM mothers and have some insight into my feelings already. She would be impartial and not judge my thoughts as someone who has never experienced a health scare with their child may.