Wednesday, February 29, 2012

Leap Day, Great Weather, Short Blog . . . all good things

Today is Leap Day and the weather in Chicago is close to 60 DEGREES! Good weather usually means good things and today’s weather is no different. We had another Fetal ECHO this morning at Prentice and the cardiologist was very pleased with the results. The heart looks strong, all the connections are pumping, and there is no fluid around the heart or belly. The Plural Effusions look good, maybe even better, although doctors are very quick to use the words “from what I can tell” or “it seems like” rather than giving an exact answer. I have to say, I don’t blame them.

We also had our weekly Biophysical and once again our little James Douglas passed with a strong 8!!!!! The breathing (while it still took a few moments to see) was much easier to watch this time around. The appointment was short and short seems to be good.

Compared to our first “surveillance” appointment the doctors seem much more relaxed with each meeting. We will continue to have growth checks every two weeks and a Biophysical every week. However, the cardiologist does not need to see us again for 4 weeks. YAY!

Tomorrow we meet with the neonatal team at Prentice, as they will be our BFFs as soon as JD is born. Do you think I should bake them some cookies so they like us?

Short blogs seem to be good, here is hoping for more short blogs in the future.  


Tuesday, February 21, 2012

Stable & Subtle are Good Words

Monday was our second surveillance test, which included a growth check and another biophysical.  

Growth: Continuing right along the 10th percentile; his weight has grown from 1lb8oz 2 weeks ago (Feb. 6) to 2lbs1oz on Monday. YAY! Seems like JD is growing right along with me (unfortunately, I am growing much more than expected; guess all my feel good baking is adding some extra lbs).

Biophysical: Passed with an 8 out of 8! While his breathing was “subtle” he is a very active little man. Sometimes we have a hard time capturing the pictures we need because he moves too much. The positive news, he is moving, his tone/flexing look good, amniotic fluid is perfect, and his breathing contractions are small but they count.

Overall, things are stable and progressing right along. They still see fluid on both sides of the lungs but it has not grown. He is active, he is growing, and he is fighting. With each week we make it closer to our goal of delivering at full term as long as he stays on the 10th percentile curve. We continue to have faith our little man will grow and stay active all the way until the end.

Thursday, February 16, 2012

A First Date and Tulips

On Valentine’s Day we were invited on a “first date” with the pediatric neurosurgeon from Children’s Memorial Hospital (for those not familiar, we have information about each hospital in the Hospitals section as Children’s will be moving in June which will be discussed throughout this blog). This is the appointment we were most nervous about because we know the Spina Bifida will need to be treated immediately after birth.  With this appointment we would begin to get a timeline of JD’s first few weeks.

First of all, let me say we are not writing this blog to complain about doctors or the medical field in anyway. Yet, it is hard not to mention the fact that we arrived at the office at 8:45a for a 9a appointment. We were called into the room at 9:15a and the doctor walked into the room at 10:10a to meet with us. In most professions that is just unacceptable. To make it worse she did not even apologize or make up a story. All I was looking for was “so sorry, my last appointment took much longer than anticipated” even if she was really on Pinterest. Waiters/waitresses do that all the time (I was one in high school so I know) “I am so sorry the kitchen missed the order but they are making it now” when in reality I just forgot to put in the order (don’t judge it rarely happened). Anyway, Nate was not a happy camper but I figure this woman would be doing a very intense surgery on our son so I should put on a happy face.

Sorry for the little rant sidenote (see it is not hard to apologize). When we walked into the appointment (and any appointment) we assumed the doctor has been briefed or has reviewed our files or ultrasounds. However, that does not seem to be the case as we continue to explain the situation. I guess we figured everyone at Northwestern and Children’s would be talking as that is what they do but it turns out they still use fax (what?!?!). Dr. B walked in without looking at our ultrasound so we explained what we were told about the spine. I hope we were correct in our explanation as I question if advertising/media professionals are fully qualified to give medical information.

Dr. B was extremely nice and we could tell she works with kids as her attitude is very bubbly and positive yet it is also very medical. She had a tendency to jump around and speak to us as if we speak “spine” all the time. That being said, I will not go into great detail but here is the rundown:
·      She asked if we could move the c-section to a Monday (it is currently scheduled for a Thursday) so we have the whole week for surgery. I am picturing my c-section like Grey’s Anatomy with my OB, the high risk doctors, the newborn team, the nurses, residents (Northwestern is a teaching hospital), and a host of others. Now, if only everything could be wrapped up and resolved in a 1-hour show it would be much easier.
·      It was confirmed we will get to spend a few minutes with him after the c-section but they will take him to Children’s immediately so the newborn team can monitor him. Of anything we have heard this is by far the hardest for me because I cannot go with him. Nate will be with JD at Children’s the whole time but I will need to stay at Prentice. My negotiation skills are already at work trying to be released early.
·      They will monitor him for two days to confirm JD will be ready for surgery on the 3rd day.
·      They will be closing up the hole in the spine as well as watching the brain to insure no fluid builds up and he is breathing is regulated.
·      Depending on how things go, he will be at the hospital for 3-4 weeks for both the newborn team and the neurosurgery team to monitor him.

Overall, no new news just putting together the timeline of JD’s first few weeks. We will still meet with the newborn team at Children’s and the orthopedic surgeon for his clubfoot as well as return visits to Maternal Fetal Medicine and the Pediatric Cardiologist. Oh and don’t forget my 3-hour Glucose test where I get to fast for 8 hours then drink a terrible drink before getting my blood drawn 3 times. Yum!

Valentine’s Day ended on a positive note with beautiful tulips from Nate the Great who makes me smile inside and out every single day. If Connor and JD grow up to be even a fraction of who Nate is they will become the most amazing men.

 (P.S. Nate received a bottle of 12 Year Reserve Jameson and homemade heart-shaped cupcakes.)

Friday, February 10, 2012

JD Has Heart

Sidenote: if any of our medical “speak” sounds off there is a good chance it is . . . but just go with it you get the general idea (you probably don't know the medical terms either :)

Today was our appointment with the cardiologist from Children’s Memorial for the fetal ECHO, which is just a fancy way to say “ultrasound with a focus on the baby’s heart.” Dr. GT’s job was to look at all the heart “connections” to ensure everything is functioning as it should. Also, she was looking to confirm the Pleural Effusions are isolated and not related to the heart (meaning there is nothing wrong with the blood flow into or out of the heart). In short here are today’s findings:
·      Skin: no fluid build-up between skin – YAY!
·      Atrial/Ventricle Motion Test: the ability to squeeze & relax is good for all chambers
·      Atrial/Ventricle Blood Flow: good, nothing is amiss
·      Connections: good; the right side connection was hard to find but once established all connections looked good
·      Overall Function: good
·      ASD: signs of possible ASD (the space is slightly larger than normal); once again, nothing to be concerned about at this time
·      Pleural Effusions: no obvious heart reasons for the fluid around the lungs (more fluid around the right lung than the left). Pleural effusions compounded with heart problems leads to more tribulations, therefore, our findings are good news!
·      Pulmonary Valve: measuring small but flow looks good

Overall, today was a good day! We have good days and we have bad days but in reality we create our own good/bad days. Nate and I have chosen to find the positives (no matter how small) in every appointment. We truly believe JD is a fighter. Each time we start to worry about JD the little man proves to us he is a champ. How does he prove it -- he will spend the two-hour long ultrasound “running” or at night he loves to do a little Tae Bo (he is old school) or JD tries to get his big brother’s attention by punching Connor while he sits on my lap when I read to him. JD is active, JD is already surpassing what is expected of him, and JD has heart. All your thoughts and prayers are with us. Thank you!