October 28th started off as a normal enough day. It was a Tuesday, and my last day at my job was that Thursday. I was frantic to wrap up loose ends before switching jobs the end of the week. I was on my way to meet with a financial planner to go over retirement funds since I was leaving my current employer-real adult stuff, that I didn't quite understand. As I was about to walk into my appointment, my phone rang. It was my doctor's office, and I was caught off guard. Typically they called the day before an appointment to remind me of it the following day, but my next appointment wasn't for a week and a half. I then thought "oh they are probably calling to tell me everything was ok on my sonogram from last Friday." Without a second thought, I silenced the call anticipating them to leave a voice mail saying everything was fine, and they would see me the following week. I went into my appointment, which took all of five minutes. Apparently when you don't have hardly any money invested, there's not much to discuss! I left my meeting and nonchalantly checked my voice mail, anticipating the nurse's voice on the other end. It wasn't; it was my doctor and she didn't sound like her usual self. She gave me her direct number, and told me to call her back ASAP. That was it. I knew instantly something was wrong from my sonogram Friday. My heart started racing and I tried to keep my hand still long enough to dial her back. She answered the first ring, without a hello, just by saying my name."Marcella!" She was sitting there anticipating my reply. She quickly told me there were many abnormalities found on our sonogram. The radiologist knew immediately upon reading it four days prior, and called Dr Agustin (my OB) and told her his initial diagnosis: dwarfism. What they didn't know from my initial ultrasound however, was if it was a fatal form. My doctor proceeded to tell me she had an appointment set up for me with a maternal fetal specialist and a level II sonogram that day. This would hopefully give them more information about whether it was lethal. She gave me all this information very professionally, but very kindly. I asked her how certain they could be off of a few measurements. She replied "you are almost 21 weeks...and your baby's limbs are all measuring at 13-14 weeks." Well I'm no OB or radiologist, but I knew this was not a normal variance, not just a lag in his development. She wrapped our conversation up with a simple "I'm sorry" and that was it. I was standing outside CTICU, and conveniently, there was a crash cart there, which I promptly collapsed on. Cries I didn't know I was capable of making escaped me, and I prayed for a few minutes of solitude; thankfully nobody came looking to see what rabid animal was loose in the hospital, but that's certainly what I sounded like. It finally dawned on me that I had to tell Mike. How did I give him this news? I called him at work, but wasn't able to form words. He thought my cries were laughs, and he started laughing, wondering what I was cracking up about. He quickly figured out that wasn't the case. I managed to sputter out a sentence fragment...OB called...things abnormal...he has dwarfism. Not a question, but a statement. I knew my doctor wouldn't give me that diagnosis over the phone if she weren't sure. Mike was done for the morning and agreed to leave and meet me at home. I called my friend and coworker Jane, who had referred me to Dr Agustin. She could tell immediately I was upset. She came down to meet me by a back stairwell where I gave her all the news I knew. She helped divide my patients and tell my doctors I would be leaving for the day. Less than a month before, I had cried in the same corner as I learned my dog had died. Now I was just told my baby might too? I didn't like the pattern and decided to bail, as if the location would change the circumstances.
I made it to my car before realizing I had no clue what was actually going to happen at my appointment this afternoon. Was it just a sonogram? Would I be meeting this specialist? Dr Agustin said I would be seeing a Dr Farley. I had never heard of him, and now suddenly this stranger felt like he held my entire future. I called Dr Agustin's nurse back, who explained I was just going for a sonogram today. She tried to reassure me by stating his brain and other organs appeared normal thus far. But I wouldn't meet this Dr Farley until November 11th. What the hell? How was I supposed to function for another two weeks before this appointment!? Mike and I got home at the same time; I promptly bawled some more, where Mike went into problem-solving mode. He quickly started looking up prenatal diagnosis of dwarfism...what he found was less than reassuring. Many forms found prenatally were in fact lethal, due to underdevelopment of the chest, and therefore heart and lungs. How could this be? Our sonogram from just four days before looked like any other sonogram I had seen. I had shown the picture to my mother in law just the night before and said "I'm sure he looks just like every other baby does right now." Little did I know how far from the truth that statement was. Hours dragged on, and we eventually found our way to our ultrasound appointment. The tech brought us back, and asked what we knew about why we were there. We told her the vague diagnosis "skeletal dysplasia." She nodded in agreement, and proceeded to spend the next 90 minutes getting very exact measurements: head size, cardiac circumference, abdominal circumference, long bone lengths, ratios of heart to chest, abdomen to chest, femur to abdomen...the measurements felt endless. She did the best she could to lighten the mood and show us some profile pictures, get some action shots of his movements. I could see his heart beating, and his legs kicking. How could that not be positive? At the end of our appointment, she informed us she did not routinely have to check many of these measurements, and she wanted another ultrasound tech to look over everything before we left. At the same time, I checked my phone and saw that I had missed a call and checked my voice mail. It was Dr Farley's nurse, Mari. She had been in touch with Dr Agustin, and had many questions for me. The ultrasound tech let me use her desk to call Mari back, while she had a co worker double check her study. While I waited for her to answer, I glanced down at the schedule. There was one line crossed out where someone had cancelled, and my name was penciled in. Marcella Stanley- Dwarfism. The lack of punctuation was not lost on me. Again, not a question, but a statement. How could just a few short hours change, and now permanently associate this diagnosis to us? Mari eventually answered, and she quickly went into what my "skeletal dysplasia" workup would entail. I could have an amniocentesis, I needed genetic testing which I had declined up to this point, I needed to get lab drawn to check viral serologies as I could have contacted an illness earlier in my pregnancy that I had not known of. Blah, blah, blah. And she gave me the last option, if I wanted to decline all this: termination. But in the state of Kansas, this can't be done past 22 weeks, and I would be 21 the next day. So if I chose this, we would need to schedule it quickly. Um, hard no. I did my best to politely tell her that I had all of 5 hours to process this information, but I was not interested in "termination." What a ridiculous PC term. Why can't we call it what it is? Abortion is abortion, regardless of the circumstance. Plus, my current insurance, provided by a Catholic institution, would not cover ANY genetic testing, as this is apparently associated with higher rates of termination. I wouldn't have my new insurance for almost a week, and couldn't get my genetic tests done until then. I declined everything else at that point and went home. We were told not to expect any news for another 2-3 days at least.
We sat the next few hours, not sure how to pass the time. Somehow, it was 9pm. Mike was watching the World Series, I was mostly staring at the wall trying to maintain some form of composure. My phone rang, and it was the main number for Wesley. I didn't even have privileges there right now, what were they calling me for? I answered, and was shocked that it was Dr Agustin on the other end, and she had gone through the operator to get my number at home. She informed me that Dr Farley had already read my ultrasound that evening. He felt very confident it was not a lethal form of dwarfism, and called Dr Agustin to fill her in. She, thankfully, went the extra step to call me after hours to give me this news. She was very reassured based off his initial report. Despite this, I was still offered the alternative: termination. We again declined, and she stated she would see us at our next visit in 10 days. I was flooded with relief, but still filled with questions. We were so thankful it didn't look lethal, but that didn't necessary narrow our diagnosis down. From our initial research, we saw there are over 200 forms of dwarfism! The most common form being achondroplasia, and if born to average height parents, is just a total fluke. Only one in 25,000-40,000 babies are born with this we discovered. I fiercely fought against the urge to think "why him, why us?" and tried to focus on the positive news we had received. For those who don't know me as well, I have always loved shows about little people. To the point of obsession that it became a joke in my family. When in doubt, Marcella's watching Little People Big World or the Little Couple. So needless to say, I did not care that our son had dwarfism. I didn't even doubt it. Mike and I, maybe even too quickly, immediately accepted this diagnosis. Denial wouldn't change anything; not accepting it wouldn't make his limbs suddenly catch up to where they should be. Despite my years of "research" er, reality TV watching, I felt so overwhelmed. I didn't know how to take care of an average baby, let alone one with special needs! I had never changed a diaper! I had just gone to work on my registry the weekend before and left feeling defeated. I didn't know what half this crap was, and my baby was supposed to need it? Now I felt that I knew even less to expect. Mike on the other hand, as usual, took the more positive approach. He told me "you have always loved little people and learning about them. You just didn't realize God was preparing you all along to be Brody's mom."
And with one phone call, our entire lives had changed. And Brody's big adventure began. Welcome to our journey!
Tuesday, December 16, 2014
Thursday, December 11, 2014
The Emotional Rollercoaster
We headed up to Children's Mercy the Monday before Thanksgiving. We were meeting with another Maternal-Fetal Specialist and getting an echocardiogram performed on Brody's heart to make sure it was functioning well. We arrived at the hospital around 8:30am for our string of appointments which began around 9am.
Our first appointment was the echo. The echo is performed by using an ultrasound machine to specifically view the function of the heart. Since small chest size is a common finding in children with dwarfism, our doctors wanted to make sure that his heart was doing well. It was a relatively quick procedure that lasted around 20-30 minutes. The pediatric cardiologist came in with some great news.
Cardiologist: From what we can tell, your son's heart is functioning perfectly. There are limitations to the technology, of course, so we cannot completely rule anything out, but as far as I'm concerned, you don't need to see me again.
What a relief! If nothing else, the fact that his heart is working well has to be positive news, right?
Our next appointment was another skeletal sonogram. Let's just say this one didn't go as well. The results were positive. Everything they found on this sonogram was exactly what they had found before so there was no news there, but our experience left a lot to be desired. The sono tech was extremely chatty. I know that she was just trying to defuse the situation with a little idle chatter and humor, but she wasn't exactly paying attention to what she was doing. She mislabeled which side of the body she was on 4-5 times and had to go back and correct it. Normally, I'm not one to get impatient, but when the doctor will be attempting to make a diagnosis based on the results of this scan, hush up and focus a little bit!
Then, the maternal-fetal specialist came in. He sat down and began going over some things. Obviously, I cannot quote him exactly, but I will paraphrase our encounter.
Doctor: I'm not going to sugar coat anything. Your child has some serious issues. What we commonly see with conditions like this are issues with the chest. Commonly, the small nature of the chest and the issues with the ribs that can be associated with this kind of condition lead to breathing issues, cardiac issues, and can be very severe. However, you never know. This kid could surprise us all and make it.
Marcella: But...We've had sonograms up until this point and everything on there has said that his chest is fine and our echo just came back clear.
*Doctor looks at our sonogram report, then looks over at the sono tech*
Doctor: How was the chest measuring?
Sono Tech: Yeah, the chest measured normal for his approximate gestational age.
Excuse me?! You didn't look at any of the reports from the four other sonograms we've had? You didn't even take the time to read the sonogram that we just drove two and a half hours to see you for? You didn't even ask the cardiologist how the echo went?! Everything that we had been told up until this point was extremely positive. Our specialist in Wichita saw nothing to make him lean towards a lethal form, and you're going to come in without even looking at our case and our test results and tell us that our child is likely going to die?
I was not happy to say the least. By this point, Marcella was a wreck.
Doctor: We would recommend that you deliver up here. We have a great team up here that would take great care of him. I would like you to come back in 2 weeks and meet our team who will be following along. We have a neonatologist, an orthopedist, and they would be able to give you outcomes on when he would be able to walk and what kind of lifestyle he will have.
Yeah, no, no, no, and no. First off, they had done nothing to build our trust or confidence by giving us a doom and gloom prognosis with no basis. Secondly, I don't care when he's going to be able to walk at this point, let's deal with getting this little guy here first.
We left Kansas City scared, nervous, irritated, and mad. I understand that doctors have differing opinions on these things. Heck, if I showed a case to three of my chiropractic school buddies, we'd have ten different opinions on how to properly treat that patient, but at least take the time to get the right information instead of speaking in assumptions and generalizations that aren't relevant to our case.
The next two weeks were nothing but stressful. Marcella and I sat and held hands more in those two weeks than we have in the 9 years we've been together. There were been nights of tears, nights of anger, and nights of prayer. We both agreed that when we had our next appointment with Dr. Farley (our maternal-fetal specialist in Wichita) we would ask him all of our questions. We had little-to-no desire to go back to see the doctor in Kansas City unless we absolutely had to.
We went to Marcella's appointment with Dr. Farley this past Tuesday. We had another sonogram to check Brody's growth. The appointment with Dr. Farley was nothing but good news. Marcella is right around 27 weeks along. Brody's head, chest, and abdomen were all measuring right at 27 weeks. His long bones of his arms and legs are measuring right around 20 weeks. So, they are still measuring small, but they are still growing which is a good thing. They also performed a biophysical profile (BPP) which checks five things:
Everyone always says "I don't care what we have, as long as he/she is healthy." I want to encourage everyone to think about that and realize how much you really mean it. Honestly, when we found out that we were having a baby, it didn't really hit me for a while. Even at the 20 week sonogram when we found out that we were having a boy, I still was taking an "Ok, cool," kind of attitude to the situation. When you are faced with the chance that your baby might not make it, it flips your world upside down. Brody is the first thing I think about in the morning. He's the last thing I think about when I go to bed at night. I would do anything to make sure that he is okay, but there is nothing that I can do but wait and pray. Until he comes, Marcella and I are doing what we can. We are hugging each other a little more often. We hold hands for a little longer than we used to. We pray together. We are definitely finding out what we are made of and what we can handle. I'm sure it won't be a completely smooth road from here on out, but I'm certain that I'm walking this road with the right person. We are just happy that, as of right now, the future looks bright for our little guy.
We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed. - 2 Corinthians 4: 8-9
God Bless,
Mike
#TeamBrody
Our first appointment was the echo. The echo is performed by using an ultrasound machine to specifically view the function of the heart. Since small chest size is a common finding in children with dwarfism, our doctors wanted to make sure that his heart was doing well. It was a relatively quick procedure that lasted around 20-30 minutes. The pediatric cardiologist came in with some great news.
Cardiologist: From what we can tell, your son's heart is functioning perfectly. There are limitations to the technology, of course, so we cannot completely rule anything out, but as far as I'm concerned, you don't need to see me again.
What a relief! If nothing else, the fact that his heart is working well has to be positive news, right?
Our next appointment was another skeletal sonogram. Let's just say this one didn't go as well. The results were positive. Everything they found on this sonogram was exactly what they had found before so there was no news there, but our experience left a lot to be desired. The sono tech was extremely chatty. I know that she was just trying to defuse the situation with a little idle chatter and humor, but she wasn't exactly paying attention to what she was doing. She mislabeled which side of the body she was on 4-5 times and had to go back and correct it. Normally, I'm not one to get impatient, but when the doctor will be attempting to make a diagnosis based on the results of this scan, hush up and focus a little bit!
Then, the maternal-fetal specialist came in. He sat down and began going over some things. Obviously, I cannot quote him exactly, but I will paraphrase our encounter.
Doctor: I'm not going to sugar coat anything. Your child has some serious issues. What we commonly see with conditions like this are issues with the chest. Commonly, the small nature of the chest and the issues with the ribs that can be associated with this kind of condition lead to breathing issues, cardiac issues, and can be very severe. However, you never know. This kid could surprise us all and make it.
Marcella: But...We've had sonograms up until this point and everything on there has said that his chest is fine and our echo just came back clear.
*Doctor looks at our sonogram report, then looks over at the sono tech*
Doctor: How was the chest measuring?
Sono Tech: Yeah, the chest measured normal for his approximate gestational age.
Excuse me?! You didn't look at any of the reports from the four other sonograms we've had? You didn't even take the time to read the sonogram that we just drove two and a half hours to see you for? You didn't even ask the cardiologist how the echo went?! Everything that we had been told up until this point was extremely positive. Our specialist in Wichita saw nothing to make him lean towards a lethal form, and you're going to come in without even looking at our case and our test results and tell us that our child is likely going to die?
I was not happy to say the least. By this point, Marcella was a wreck.
Doctor: We would recommend that you deliver up here. We have a great team up here that would take great care of him. I would like you to come back in 2 weeks and meet our team who will be following along. We have a neonatologist, an orthopedist, and they would be able to give you outcomes on when he would be able to walk and what kind of lifestyle he will have.
Yeah, no, no, no, and no. First off, they had done nothing to build our trust or confidence by giving us a doom and gloom prognosis with no basis. Secondly, I don't care when he's going to be able to walk at this point, let's deal with getting this little guy here first.
We left Kansas City scared, nervous, irritated, and mad. I understand that doctors have differing opinions on these things. Heck, if I showed a case to three of my chiropractic school buddies, we'd have ten different opinions on how to properly treat that patient, but at least take the time to get the right information instead of speaking in assumptions and generalizations that aren't relevant to our case.
The next two weeks were nothing but stressful. Marcella and I sat and held hands more in those two weeks than we have in the 9 years we've been together. There were been nights of tears, nights of anger, and nights of prayer. We both agreed that when we had our next appointment with Dr. Farley (our maternal-fetal specialist in Wichita) we would ask him all of our questions. We had little-to-no desire to go back to see the doctor in Kansas City unless we absolutely had to.
We went to Marcella's appointment with Dr. Farley this past Tuesday. We had another sonogram to check Brody's growth. The appointment with Dr. Farley was nothing but good news. Marcella is right around 27 weeks along. Brody's head, chest, and abdomen were all measuring right at 27 weeks. His long bones of his arms and legs are measuring right around 20 weeks. So, they are still measuring small, but they are still growing which is a good thing. They also performed a biophysical profile (BPP) which checks five things:
- Breathing
- Movement
- Muscle Tone
- Heart Rate
- Amniotic Fluid
Everyone always says "I don't care what we have, as long as he/she is healthy." I want to encourage everyone to think about that and realize how much you really mean it. Honestly, when we found out that we were having a baby, it didn't really hit me for a while. Even at the 20 week sonogram when we found out that we were having a boy, I still was taking an "Ok, cool," kind of attitude to the situation. When you are faced with the chance that your baby might not make it, it flips your world upside down. Brody is the first thing I think about in the morning. He's the last thing I think about when I go to bed at night. I would do anything to make sure that he is okay, but there is nothing that I can do but wait and pray. Until he comes, Marcella and I are doing what we can. We are hugging each other a little more often. We hold hands for a little longer than we used to. We pray together. We are definitely finding out what we are made of and what we can handle. I'm sure it won't be a completely smooth road from here on out, but I'm certain that I'm walking this road with the right person. We are just happy that, as of right now, the future looks bright for our little guy.
We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed. - 2 Corinthians 4: 8-9
God Bless,
Mike
#TeamBrody
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