Finding a Great Pediatrician When Your Child has Down Syndrome - What to look for

Jacob has been home a total of 4 days and we had our first doctor's appointment with his Pediatrician. They were recommended by every doctor in NICU as well as a couple of my friends who have children with Downs Syndrome.  So obviously, I had high expectations.  Aside from the the ladies at the front desk, I was really quite impressed by them.

 I met with my doctor who checked his oxygen levels (good), his weight (he's gained almost 1 lb since birth), his liver and heart (for heart failure), and an assortment of other things.  She was great about answering all of my questions and taking time with me to make sure I knew exactly what I was in store for.

She made sure Courtney got her flu shot so that Jacob would be less likely to be exposed to the flu.  Since virtually EVERYONE in our family has been sick except for Jacob and me, I asked her when I should come in should I begin to see symptoms of a cold or the flu in Jacob.  She informed me that he has no threshold which means that the first sign of sickness I needed to bring him in.

We talked about the signs of heart failure (our cardiologist informed us to expect heart failure in the first month) which includes weight loss, sweating while or after nursing, panting, an enlarged abdomen from his liver, listlessness,etc. She checked him for the signs and said he looked well.

I asked her about when to get him circumcised, and she informed me that she did not recommend circumcision before his heart surgery unless he was already going to have another procedure because it could be too traumatizing for him right now (wow!)

Then she informed me that she wants to see me every week to monitor him and his health.  Plus, she does NOT want him in the waiting room when we come to visit where he'd be exposed to the other sick children, and that she'd make sure I was immediately directed to a room in all subsequent visits. 

I left the appointment feeling like I now had a doctor that:
 1) knew what she was doing and had a lot of experience in Jacob's disability.
 2) She cared about my concerns and was happy to spend as much time as I needed to make sure I was fully informed and prepared for upcoming events.
 3) I had been WAY too nonchalant about Jacob's condition and I needed to be much more diligent about his heart defect and keeping him germ free. 

Needless to say, I am hunkering down and preparing to be a hermit for the rest of the winter.  Luckily, the darned boy is so cute I think I could spend a YEAR just cuddling and watching all of his facial expressions!  It's hard to give him up to his dad in the evening so that I can work and get things done. 

He literally eats, then sleeps for 4 hours and repeats.  It doesn't matter how loud it gets around the house, or if I need to take him in the car to drop Nathan off for school. He just sleeps through it all and wakes up just long enough for me to feed him again.  Needless to say, it makes getting things done around the house MUCH easier! :)  How was I so blessed to have such a relatively easy baby? ....OK, aside from all of the doctors appointments I will apparently be having each week!!!

Baby Jacob is Born!!

Wow!  I didn't realize it had been so long since I posted.  But of course, what would you expect?  I've been a bit busy having a baby and all.

After approximately 2 weeks of labor pains which ultimately did NOTHING to get the labor process going, I was induced on October 25, 2010.  It was one of the most overwhelming, yet surreal experiences I've ever had. I was on the brink of tears most of the time (for what reason, I'm still not sure), and yet, I was the most calm I've ever been during any of my deliveries.  In fact, I dozed off several times during the labor process!!!

It took 1 hour and 5 people to get my IV in.  After that, it was the easiest delivery I've had. The doctors, nurses and technicians were amazing.  The epidural was divine (why did I even CONSIDER not getting one??), I felt Jacob descend in literally 2 contractions, and he was out in 2 pushes. And he was absolutely beautiful.  KC even got to carry him up to NICU after he was born. 



This was the beginning of the sweetest, most endearingly adorable child I could possibly imagine - and he's MINE!  All mine!!!

In spite of his heart defect, and Downs Syndrome Jacob came out relatively healthy.  He wound up having high red blood cells, which made his blood like "sludge" and caused Jaundice.  He needed just a tad bit of air for a couple of days, and they noticed the he had an infection which meant he needed to be on antibiotics for 10 days.  They suspected that his aorta may be slightly constricted, but didn't find anything that confirmed that diagnosis in their original cardiogram and decided to monitor the blood pressure of his four extremities to see if there were any differences in blood pressure. 

Although poor eating is considered common in children with Downs Syndrome, Jacob eats like a champion! - he just doesn't like to eat from his mother! grrrrr. Luckily, I'm persistent and am hopeful that he will see the error of his ways and begin nursing here shortly.

All in all, he is healthy and happy, and should be out of the hospital by Thursday, November 4th. 

Another development/bonus is that our NICU neighbors wound up being fantastic! Sadly, they didn't find out about their baby's Down syndrome or heart defect until after he was born.  I had the severe misfortune of being in my little 'curtain area' trying to nurse when they first came into the NICU where their new born baby was laying and met with the doctors.  It was absolutely heart-breaking.  It gave me several moments to reflect on how I had reacted so many weeks ago when I received the news about Jacob.  Yep.  I could TOTALLY empathize.  In fact, I think they took it much better than I did.  They met this trial head-on and have been the most amazingly strong and positive couple in spite of their adversity. 

We've found that we have so much in common not only with our little babies, but our families, both being LDS, and so much more!  They have been a blessing in our lives, and it has been wonderful to be able to lean on one another when life gets overwhelming or we just need someone to talk to who knows what we're going through.

What an overwhelming experience to have your world rocked in such a way with such a tiny, defenseless child.  But when you look into their fearless, trusting eyes you can't help but bristle with protectiveness and vow to love and take care of that little one no matter what it takes. 

So, the past 7 days have been filled with hours upon hours of me either driving to and from the hospital (30 minutes each way),  feeding Jacob, meeting with doctors, specialists, nurses, therapists, etc. or just holding him and marveling at what a strong spirit he has.  In spite of all the pain he has endured in his short little life with multiple IV's, blood tests, poking and prodding, and so much more, he just silently endures it all.  Rarely do I hear a cry from his tiny little lips, or a squeak of pain.  He is my rock.  And maybe when I'm all grown up...I'll be as strong as him.

Psych!!!

So yesterday I had my weekly "You get to spend all DAY at the doctors' office doing tests" day.

This Friday I got to go in for a Biophysical Profile, a growth scan, and then meet with my OBGYN to find out all the results and to see if anything needed to be done for the baby.  Yesterday, I drove 30 min to the ultrasound and had the baby kicking and moving the entire drive.  As soon as I got into the Ultrasound room, he decided he was tired and fell asleep.  Niiiiiice.  NOT what you want to happen when they are checking for fetal movement.   So we spent 1/2 hour trying to wake the little bugger up - they moved me onto my side, then back onto my back, then made me put my legs straight out, then gave me some apple juice to get him all 'sugared' up, then I emptied my bladder, they put a vibrating buzzer up to him to scare him awake...nothing.  This kid would NOT budge.  Is it too much of me to ask that he sleeps the same way when he's OUT of my tummy too?

Needless to say, he just barely passed the "breathing" part of the test, but he failed the movement part horribly. 

I went to my Doctor's appointment and he talked to me to see if the baby had been moving, which I told him he had.  He asked me if there were changes, and I basically told him my contractions were further apart but more painful.  He asked me if he needed to check me and I said, "Nope.  You and I both know that I'm not having this baby before induction date.  I've been induced with all of my 3 other kids".  Normally I'd at least get a smile from him.  Nothing.  Hmmmmm.

He told me that the baby had failed his BPP and that he needed to send me to the hospital for another test.  I said, "OK".  We discussed when induction would actually be (the 25th) and he realized we didn't choose a time, so he had Megan, his nurse take me to the scheduling nurse to schedule the induction  and even suggested to her that she take me to the hospital.  I informed her I'd been there several times already and I was sure I could find my way.  The whole time I was with them at the office it was if they were waiting for me to FREAK OUT or something....just kind of treading lightly.


C'mon.  Seriously? If I thought that something wasn't right, I'd be the FIRST person to be saying something.  Knowing that something can go wrong at any given time has made me ubber sensitive to what's going on inside me.  If Jacob hadn't moved all morning, I would have been concerned.  Besides, this is NOT my first pregnancy, and it certainly wasn't my first time hanging out at the hospital for some Stress Test to prove what the previous ultrasound had already confirmed...his heart was beating regularly and at the right speed and all was fine.  I just had a heavy sleeper inside me. 

So, anyway...I called Elisha to let her know I'd be staying a little longer than expected. And I called KC (who of course, was in St. Maries and 3 hours away from me with sporadic cell phone coverage)  to let him know I was going to the hospital, but not to worry...just DON'T ignore my phone calls if I try to call again later ;)  I stopped by the intake office (I hadn't turned in my intake paperwork yet for the actual induction date) and they looked at me funny for not going straight up to the Labor and Delivery office.  I just ignored them.

Finally, I made it to Labor & Delivery.  They had been waiting for me and already knew me by name.  They took me to a little room, hooked me up, gave me a TV remote ( I can't remember the last time I've watched TV during the day....nothing has changed.  It's all still CRAP) and left me to lay there for about 30-45 minutes as the machine monitored the baby's heartbeat. 

Funny thing happened....NOTHING. His heartbeat was just fine.  Nice and steady.  No arrhythmia, not stops, no gaps.  He was a normal little baby STILL sleeping.  Though I did get to notice that my contractions were pretty much 6 minutes apart while I was there.  Hmmmm something to keep an eye on.

Elisha Allred: Soon-to-be big sister of Jacob, a boy with Down syndrome

My poor little boy freaked all the doctors and nurses out for nothing.  He's nice and healthy.  So they sent me home.  I was glad to leave.  I was NOT ready to have this baby yet!  It looks like, however, that our family will get to spend the rest of this weekend GETTING the house ready. Just as soon as Elisha finishes up her Saturday Volleyball Tournament! :)