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:

1. Breathing
2. Movement
3. Muscle Tone
4. Heart Rate
5. Amniotic Fluid

The BPP went great.  Everything was functioning well and he is essentially a healthy baby boy with small arms and legs!  Now was our chance to talk to Dr. Farley.  We told him about our experience at Children's Mercy, what the doctor had said about Brody's prognosis, and everything else.  Dr. Farley reassured us that he saw nothing on any of our sonograms that suggests that Brody's outlook is anything but positive.  The fact that his heart, lungs, brain, and everything else is measuring and functioning well as far as they can tell is very positive for his prognosis.  He also didn't see anything that suggested that we would need to have him in Kansas City as opposed to Wichita.  Talk about a load off!  Marcella has been the emotional one through all of this, but I almost lost it when we got the news that he was going to be okay.

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