Big Brother, Little Brother

Big Brother

Today started off fantastic with Connor’s 18-month check-up. This kid continues to amaze me as becomes more like a little man each day. When we walked into the exam room he was very skeptical at first but got more comfortable as time went on and ended up dominating the visit. Seriously, Connor is going to be the best big brother to JD as we watch him grow everyday. Oh and if you are keeping track Connor is 35” (90^th percentile for height) and 27lbs, 7oz (just under 75^th for weight) and ready to be a Tight End, according to his Dad.

Little Brother

Our doctor’s visit was even more rewarding when talking with Dr. D, the pediatrician, about JD. We assumed with a special needs child we would be looking for a specialized pediatrician for JD yet it turns out Dr. D is still our guy. Dr. D said he did not know about WHS but he will become the expert in Chicago and he would be honored to continue to be the family pediatrician for both boys. This made my day because we trust him with Connor (and he is the pediatrician for many of our friends) and now we know we are in good hands with JD. He works with other special needs families and knows the doctor’s at Children’s very well. When looking for a pediatrician for JD we need someone who can be the “General Contractor” as Dr. D calls it. Thank you Dr. D for making these next few weeks a little easier knowing you are part of Team JD.

In the afternoon, while Auntie Jill was watching Connor (big thank you Jill for spending time with our big man) we had another Biophysical. And yet again we received another 8 out of 8. We are 35 weeks today and JD is enjoying his stay. Today’s appointment was the fastest ever. Despite our request for the same tech, we had a brand new tech but it worked out just fine. The first 2 points we received were for breathing within the first minute. YAHOO! The kid is getting the hang of things. The whole test is supposed to take 30 minutes, however, we were done with the test, the pictures, and the Doppler on the umbilical cord within 15 minutes. This tech was good knew exactly what she was doing.  The fluid is still low but no change in the levels so we are good to go.

Growth Check on Monday – this will be a BIG one. JD only grew 3oz at our last growth check so I am guessing  (with no medical support to back me up) that we will need at the very least another 3oz to keep moving forward as planned. Let’s get greedy and ask for at least 5oz to push us even closer to 3lbs.

All in all, Big Brother is doing amazing and Little Brother is getting stronger everyday. I am very blessed to currently have two remarkable boys in my life (Nate and Connor) and another incredible one on the way. Plus, I get to eat sweets again next weekend once Lent is over. I may skip Easter lunch and move straight into Easter dessert. Yum!

Enjoy the weekend!

Perfect Score

In February I said short updates mean good news so I will make this one really short.

We had our favorite ultrasound tech today (we have now requested her moving forward), James Douglas scored an 8 out of 8, Dr. GB was very pleased with all the results, amniotic fluid is slightly up (still low but more than last week) and we have no more appointments until Thursday afternoon.

Hope everyone has a great week!

Happy Heart

Quick little update from our cardiologist appointment on Thursday, 3/22: Everything looks good!

·      Plural Effusions are significantly better than before

o   Continues to see no cardiac reason for the Plural Effusions

·      Heart Rate is around 125 which is within normal limits

·      Timing measurements for both ventricles look great

·      Continues to be a possible ASD but does not seem to be something to worry about right away

·      No fluid in the belly or around the heart

·      Arteries are small but symmetrical which is important

·      All connections look good

At this point Dr. GT does not need to see us again before JD is born. She will do an echo after his is born before his surgery but she sees no reason for there to be any heart related issues at birth.

Like we have said many times, this kid has heart and he proves it to us each day. His movement has even picked up over the weekend so he is telling us to enjoy the nice weather and our final 4 weeks.

Our next Biophysical is on Monday at which time we fully expect to receive an 8 out of 8. And I personally hope we do not have the Pinky Tech as I am not big on water torture on Mondays.

WE PASSED

After a few days of stubbornness our little man decided to play along today by passing his Biophysical Profile (BPP) with an 8 out of 8! We had the same ultrasound tech yesterday and today so she was rooting for us and doing everything we could to ensure we had at perfect score today.

Breathing

It was great to watch how excited the tech got when he passed the breathing portion. I was watching for breathing contractions very closely and the tech shouted “he just past his breathing portion.” YAY!

Tone/Flexing

JD keeps his little hands up in his face protecting his moneymaker so we needed to poke and prod in order to get him to open his hands for a few moments. After a few words of encouragement he opened his hands very quickly as if you say “happy, now leave me alone please.”

Amniotic Fluid

The fluid was slightly lower than yesterday but the tech was great because she checked at the beginning of the BPP only to check again at the end to see if any more pockets had opened up. And they did. We increased slightly by the end of the test. Still low but we were able to pass that portion, so thumbs up.

Movement

Surprisingly, this was one of our harder portions today. This kid just refuses to make things easy on us. He is still moving but with less emphasis as the past few months. As long as I feel some movement I feel fine so I just wait to feel those great little kicks and flutters. JD already loves his brother tons because he responds most to Connor’s voice. Before I left for my appointment today I asked Connor to talk to JD so he would be ready for lots of movement. It was a sweet moment.

Overall it was a great day. I also had an appointment with my regular OB who was very pleased with the results. A big shout out goes to Dr. G (my regular OB) and Dr. GB (the high risk doctor) as they talk regularly. From the time I walked the two blocks from Prentice to my next doctor’s appointment the tech had already faxed my results to Dr. GB who had already called Dr. G to give her the news. These doctors work so well together and keep each other in the loop better than we do. They run a tight ship between all the offices, which I greatly appreciate.

There was one thing I was slightly nervous about which I did not mention yesterday. Anyone who knows me knows I am very organized and tend to have a plan as I prepare for big events. Well, I am not far enough down my timeline yet so I was very worried I might be admitted to the hospital for monitoring WITHOUT deep cleaning my bathroom. Seriously, this caused some anxiety, as there is no one who can clean a bathroom better than me with the BIG exception of my mother. I will never be at her level but not even a maid can clean a bathroom as well as she can. So the idea I would leave my bathroom without a deep clean made me upset. However, thanks to my wonderful parents who watched Connor for a few extra hours today I was able to clean and organize my bathroom to prepare for my absence. Now I just need good maintenance every few days to make sure it stays fabulous by the time we leave. Now I can breathe.

Tomorrow morning we have another Fetal Echo but no Biophysical due to our success today. The heart looks good at each ultrasound so we hope to see the same pattern tomorrow. Our next BPP is on Monday, 3/26 so we will hope for another passing grade. Nate and I plan to pack our bag for each appointment incase we are admitted for monitoring. Actually, we figure the more prepared we are the less likely JD will come early – we learned that from Connor who extended his stay 2 weeks.

Thanks to my mom who joined me today for my appointments as Nate was out of town in meetings all day. I am sure her direct link to the big man helped during our test.

Thank you, thank you, thank you for all the prayers and texts and calls today. Everything is working to keep this little man pushing forward.

Finally, Happy World Down Syndrome Day to all our little buddies who make each day a joy.

Another Day Full of Tests

Today we had our second round of Beta shots so I am fully juiced in both legs. Unfortunately, I realized the shots mean competing in the Olympics in August is out of the question. This makes me very sad seeing as I LOVE the Olympics AND I love the British. Oh well, there is always 2016. I guess I will have to watch my bestie Duchess Catherine.

The Shot

During my shot today we needed to do another NST as it turns out the nurse did not say he was reactive yesterday she said nonreactive. They should make those words sound different. Anyway, it was just me, my juiced leg (which we numbed today so the shot was a a little better but not much), the Payton Manning news conference, and my book Water for Elephants for an hour. Turns out Manning is going to the Broncos incase you slept all day and did not hear this important BREAKING NEWS.

The NST

Today’s NST was better than yesterday with a little bit more reaction but not enough to satisfy the doctor so up I was sent to the 5^th floor for another Biophysical (actually they wheeled me up to which I asked the nurse if it was necessary, she said I could walk if I really wanted to but it was just procedure so I decided not to complain and be wheeled around for the afternoon). Nate was very distraught I was by myself but it was better he was not there doing lots of waiting (my mom wanted to come with me but I said I would be okay on my own little did I know I would be there for 3 hours). The good news is today’s NST was better than Monday’s test and JD is still moving all around.

The Biophysical

Nate and I talked before I went into the Bio and we figured we would get another 6 out of 8 as JD is very stubborn with his breathing. Sure enough the little man did not breath the way he needed to in order to get a full score of 8. He would breath for 15 seconds and stop then 15 seconds again but never the full 30 seconds they need to give us those 2 points. I am sure he is breathing like crazy right now laughing at all the fun he is having. Once again, this is nothing to be overly concerned about but it means we have more surveillance to come.

Movement looks good, heart rate is very consistent and looks good, and tone and reflex look great.

Of course, that was not the end of it. My amniotic fluid was lower today than it has been in the past. While we scored the full 2 points for that section of the Bio it is something that we now need to watch as it was at normal levels yesterday but much lower levels today.  Really, Seriously?!? As Connor would say “Come On” give us a break for just one moment.

I talked to Dr. GB over the phone and she said once again there is nothing pointing us to delivering right now; but we are still in a holding pattern as there are things we still need to watch closely to ensure everything is functioning. So back I go for another Bio to check his breathing and my fluid tomorrow. I worked out today and did not drink enough water so I think maybe that is why my fluid is lower (I do not even know if that affects anything but it makes me feel better). So tonight is all water and green shakes.

Our Feelings

A friend asked me today how I am feeling about this information and I told her, honestly, I feel fine. I am not concerned. It might sound odd, but my “sense” has not kicked in to tell me to be concerned. The moment we walked into our 20-week ultrasound I knew something was off and it was. The morning of our amnio I knew that day would be a good day so I was not concerned and it was a good day. Then on the morning of January 6^th, with no knowledge Dr. P would call us that day, I woke up with a terrible feeling. I knew the day would not be a good one and it ended up being a very difficult day. Therefore, until I get that “sense” (which I truly hope I never do) I feel fine and I am not overly concerned. We cannot be upset or concerned every time we hear something we don’t like because it will make the next 5 weeks or months or years very difficult. We intend to stay positive and focus on each day the best we can.

Today I told my cousin, we have been very lucky with the doctors and nurses. No one has ever been doom and gloom with us. They are always positive and just give us the straight facts. While they might not totally understand or know much about Wolf-Hirschhorn they always treat JD like a baby without a chromosome abnormality. We greatly appreciate this approach as we have read many other stories were doctors just dismiss babies with abnormalities. These doctors are following the same protocol as they would any other baby who has a few prenatal health challenges. Now, we are not naive to think all doctors will be this positive and things could very well change once he is born. However, at this point it helps us to stay positive to keep this pregnancy as on track as it would be with a normal, healthy pregnancy. The doctors have NEVER made it sound like he will not make it; they are monitoring him the same way they would with any other baby trying to make sure he is delivered at the healthiest time for JD.

Please stay positive with us and keep the prayers coming. I know I say it all the time but this kid is a fighter and he wants to be healthy for everyone.

Thank you so much for the support we received daily. The simple emails, texts, calls, or comments truly mean the world to us to know we have such a great support system. Everyone asks “what can I do” and my answer is to pray and keep up the positive support. I LOVE hearing from everyone and it is never inconvenient. It really warms my heart each time I hear from any of you. Thank you a thousand times over.

Everyone Has an Off Day

First of all, we want to thank everyone who reached out today and the past few days with texts, emails, and phone calls with thoughts, prayers, love and support. It helps to keep us positive and to have many, many good days. We can never thank you enough for reading the blog and joining our family in getting to know JD even before he is born. It helps us smile every, single day.

As we have mentioned, today was a big appointment for our little man. We needed some good numbers to help push through the last few weeks.

Good News:

The first thing Dr. GB said when she walked in “we saw nothing dramatic today.” The more we meet with the high risk doctor the better “nothing dramatic” sounds. She was very positive as she spoke about his movement, heart rate, and Plural Effusions. The Plural Effusions have decreased on both sides and the right side basically looks to be gone to which the ultrasound tech (who was new to us today and was not our favorite – but more on her in the Sidenote) had to confirm with the doctor that she was suppose to monitor both sides. YAY! Anything to make the lungs healthier will help immediately after birth.

Fair News:

While we were looking for some big growth numbers today (think Biggest Loser only in the other direction) we had less growth than we wanted. This is the time when babies grow a lot during pregnancy; yet, JD only grew about 3oz over the past two weeks. He is little guy who is active with a good heart but still below the 10^th percentile curve weighing-in at 2lbs 8oz. As we mentioned before if he slowed with his growth we would need to do a round of steroids to help prepare for development in case of an early arrival. This was something we wanted to avoid because who wants to add extra “stuff” into your system while your pregnant. We spent a lot of time asking the doctor questions about the side effects such as will I get super buff. The doctor reassured us I would not have ‘Roid Rage or be able to lift cars. Nate encouraged me by calling it an extra energy boost to help get him through a possible early delivery. We know JD is half Nolan/ half Gawel so he does not need an extra boost of awesomeness but I guess years of medical research trumps Nolan/Gawelness. Also, the umbilical cord blood flow is still higher than it should be (we explain more about what this means in the Medical Jargon section) but not so extreme we need to be overly concerned at this time.

Based on everything we have seen and heard we still feel his movement and VERY consistent heart rate prove he is still strong and the placenta is still working. We are very sure about this we even told the doctor - who needs 7 years of medical school when you can feel your baby move. The doctor absolutely agreed with us. She said, healthy babies move a lot which is why she is not overly concerned with the growth or the cord flow. Nate and I also talked about how the slower growth is very consistent with WHS; many of the babies we have read about were all born within the 3lbs range so JD is not too far off. Once again, the doctor agreed and said if there was no chromosome abnormality it would be a lot more concerning but his movement really shows he is still doing well. Yahoo for JD showing off his skills week after week.

No Dean’s List this Week:

After weeks of perfection JD has fallen off the Dean’s List by receiving a 6 out of 8 on the Biophysical. He was stubborn and did not breathe enough to get the final 2 points soooooooo we needed to have a Non-Stress Test (more information about this test in the Medical Jargon section) today as well as another one tomorrow. I think JD likes showing off his moves to the doctors and nurses so he likes these arrangements because he is very active during each appointment.

Steroids:

After our Growth Check and Biophysical appointment we walked over to Prentice for my first shots of steroids and the Non-Stress Test (NST). We had the NST while in triage for the steroid shot. Anyone who has been in the Prentice triage rooms knows they have TVs and ice chips so we were all set.  Normally I would not go into details about a shot but let me just tell you a few things about this shot.

First of all, I am not scared of shots and needles do not bother me at all. I also have a pretty high tolerance for pain (I lasted a lot longer than most with contractions during Connor’s labor - although that epidural was yummy). Therefore, I went into this shot thinking "big whoop shoot me up while I watch continuous Payton Manning coverage on ESPN" (gotta give Nate a little something while he sits next me during our test). The nurse, who was awesome, decided my arms might be a little too small (rude) for the shot so she went into the thigh muscle (plenty of room in that spot). She literally wound-up and stuck that needle right into my leg then proceeded to say “you will feel some burning, burning, burning” and let me tell you I DID! How in the heck do those baseball players do that day after day? Oh my goodness that hurt. First the burning then muscle pain. Seriously, hitting 20 extra home runs is just not worth it at least in my opinion. Seriously, look at the Cubs they still get paid millions and sell out games for having a terrible offensive. The pain probably only lasted about 10 minutes but it was unexpected pain so Nate laughed at me as my “whatever” face turned into “WHAT JUST HAPPENED.”  But the best news is I get to do again tomorrow (Tuesday) all by myself. Nate will be in meetings all day so it will be me and the needle and burning and the muscle pain oh and the non-HD TV. But if it helps JD, then I will take hours of pain.

JD was reactive during the NST (as we knew he would be) so we are good until we test again tomorrow.

 

Final Thoughts:

With the slowed growth, increased umbilical cord blood flow, and 6 out of 8 Biophysical we will be upping our surveillance to twice each week (oh boy more doctor’s appointments). Once again, the doctor is not overly concerned but just feels it is better to watch closely over the next few weeks. While everything did not go our way today we still feel like James Douglas is a strong little boy who is overly excited to meet his big brother Connor and all of you. We know in our hearts he will join us when the time is just perfect for him. Guess I need to make sure the house is clean at all times to prepare for his arrival. Spring-cleaning here I come.

Here is our lineup of appointments:

3/20 – Second shots of Steroids + Non-Stress Test

3/21 – Dr. G, basic check-up

3/22 – Fetal Echo with the Cardiologist + Biophysical

3/26 – Biophysical

4/2 – Growth check

We also want to thank my WONDERFUL, loving, and amazing parents who drop everything and watch Connor at anytime of day and any day of the week so we can make each appointment. They have taken away all of our stress when it comes to scheduling appointments as we know they will always be there to help. Also, we want to thank Nate’s FANTASTIC parents who call us everyday and who have taken time off of work to follow Connor around while we go to appointments, out for date nights, or just so we can do stuff around the condo. Nate and I are blessed with many, many things but our parents currently top the list. Thank you!

Sidenote: To anyone thinking about going into radiology to become an ultrasound technician. I have two recommendations for you:

1)    This is not a tea party so please do not stick your pinky out so that is drags around your patient’s belly as you move the wand. It feels like Water Torture to have a random pinky finger lightly brush your stomach for 30 straight minutes. Nate thought I was in pain because of my face throughout the ultrasound. Not pain, just torture. I would take 10 more steroid shots over that darn pinky.

2)    While the Tiffany dangle bracelets are awesome (at least they were in the early 2000’s) please do not wear one on the hand you plan to hold the ultrasound wand. Why you ask – see #1. Once again, having something besides the ultrasound wand brushing your belly for 30 minutes is ridiculous.

I hope I have been able to help future radiologists.

Those were not the only reasons we did not like this tech as she took very few pictures of each area (which we have learned is not the proper procedure as you need as many angles as you can get), said zero, sighed and stretched during the procedure, and was as personable as a frozen waffle – extra thoughts added by Nate but I totally agree. Oh well, we have been very lucky with all our doctors, nurses, and techs so we cannot complain too much (except for the 30 minutes of water torture I had the pleasure of enduring).

We’ll Take an 8 out of 8

This morning we had our weekly biophysical and it went well as he scored another 8 out of 8. JD kicks all day long stretching out those little legs of his. I believe he is preparing for his big brother’s Lil’s Kickers soccer program that starts tomorrow. It seems JD did not get the memo that babies are suppose to sleep while mom is active b/c he kicks and punches even while I am working out or running after Connor. I think he just wants to prove he can keep up.

Things looked good today. We still have a hard time getting him to breathe for 30 straight seconds but he is breathing a lot which is good. The blood flow in the umbilical cord has increased slightly but that does not seem to be a concern at this time. Once again the best news is the fluid in the lungs has NOT increased and has possibly decreased. We will take it even if it is only a “possibility.”

Overall, today was another good day. Our big appointment is our Growth Check on Monday (3/19) at which time we are hoping for LOTS and LOTS of growth. Until then, we will take all the kicks and we will enjoy watching Connor play on his first soccer team tomorrow.

Grow Munchkin Grow

Neonatal Team:

Nate and I met with Dr. K from the neonatal team at Prentice on Thursday, 3/1 to discuss the plan for JD’s day of birth. The Neonatal Team consists of the doctors who watch over the little munchkins who need extra care immediately after birth. Anyone who has ever had a baby in the NICU will be very familiar with the neonatal doctors.

These doctors work between both Prentice and Children’s Memorial so they will get to know JD at Prentice then continue to be a part of his care at Children’s. It may not be the same doctors but the overall team works across both hospitals hopefully keeping things consistent.

Biophysical & Growth Check:

On Monday, 3/5 we had another biophysical and growth check. The ultrasound tech was different from our previous appointments. At first we were a little concerned, as we really want consistency, however, after a few minutes we were very comfortable with this tech. This was the same tech we had for our amnio and she was the one who told us we were having a little boy. She explained each picture she was taking and she played around with the 3D ultrasound so we got some great pictures.

JD received another 8 out of 8 for his biophysical meaning his vitals are looking good. But that was not even the best news . . . the Plural Effusions have decreased. YAY!!!!!! Both sides look much better. Nate and I have seen enough ultrasounds to actually notice the decrease before it was confirmed by Dr. GB. There is a chance they may start asking us to do our own ultrasounds we are that good. I am pretty sure a media career translates to radiology seamlessly.

While most of this appointment was good news we still have a long way to go. JD did not grow as much as he should have over the past two weeks. Two weeks ago he was 2lbs 1oz and on Monday he was only 2lbs 5oz meaning he only had one week of growth instead of two weeks. Despite the fact he has fallen off the 10^th percentile Dr. GB was not overly concerned as there was still some growth plus good vitals. This slight change means the surveillance is even more important.

Our next steps really depend on JD. If he continues to grow we will continue to move towards a delivery date around 38 weeks. However, if his growth slows down or he stops growing all together we will have a new path follow. Without getting into the details it will include a round of steroids to help prepare his organs for a premature delivery. The doctors do not seem too concerned about this but Nate and I do not want to take this path. Please pray for JD to keep growing at a significant rate all the way through birth. We just know in our hearts that he will be much better off the longer he has to “cook.” Connor took an extra two weeks and he turned out pretty darn great. Besides, I am a fabulous hostess so I think JD would like to stay a little longer.

We have another biophysical next week then a growth check in two weeks. JD continues to move and kick endlessly. At night I have a cup of tea and put it on my growing bump to watch it move around. It is pretty hilarious to watch.

We have also become a part of the Wolf-Hirschhorn community by posting our story on the WHS website. If you have a moment check it out:

http://www.wolfhirschhorn.org/2012/03/unborn-child/expecting-a-baby-boy/

Thank you for your continuous support and prayers. 

 While it is hard to see after it was scanned into the computer here is a picture of JD smiling all comfy and cozy.