Thursday, June 9, 2011

What we know as of now...

WARNING:  This post is long, and it is as much for my own memory as it is to help friends understand what's going on.  Also, I in no way possess any medical training.  So, feel free to correct me if you see any errors here.  It's all as I understood what the doctors were telling me.  :-)

Last week, we traveled up to Albuquerque again to see multiple doctors.  Because the appointments spanned two days, we stayed the night with our friends Kyle and Chrissy.  Their hospitality made what could have been a challenging trip significantly more enjoyable.

We were pretty nervous about what the doctors would say.  There was still so much we didn't know, and we had waited to meet with them to learn more about what our little boy will be dealing with.  We wanted to be educated by the doctors...not the internet.  Expecting more hard news, we instead ended up leaving each appointment surprisingly encouraged.

From the NICU doctor, we learned:
  • The length of his stay in the Newborn Intensive Care Unit will be roughly until his due date (September 3rd). 
  • Soon after he is born, he will be on monitors and IVs.  He will receive an ultrasound, an EKG, and an echo cardiogram. He will also probably receive antibiotics. 
  • Trisomy 21 babies have a harder time eating at first.  IVs and feeding tubes could be involved.
  • Along with that, nursing will be difficult.  I can use a hospital-grade pump, and they'll use that once he's off IVs. 
  • He might need help breathing, and he will likely be assisted by oxygen or a breathing machine.  
  • She expects Downs babies to come prematurely.  This, however, was contradicted by the pediatric cardiologist. 
From the pediatric cardiologist, we learned:
  • Prematurity isn't necessarily more prevalent in babies with Down Syndrome.
  • His arteries and veins look normal...which is great. 
  • After he is born, they will quickly evaluate him to ensure the diagnosis is correct.  This is partly the reason for the echo cardiogram. 
  • They will then meet with us to determine a follow-up plan.    
  • He will have surgery when he is 4 months old.  It is a 5 day recovery if all goes well.  The surgery involves using a dacron patch (a woven, plastic material similar to that of a parka) to create the missing septums.  Apparently, the heart covers the material with cells and it doesn't need to be replaced.  In fact, the heart grows in proportion to the body and the patch stays the same...meaning it becomes rather insignificant over the long term. 
  • The surgeon has never seen a fatality.  A few have needed a second surgery or an artificial valve put in, but it has a great success rate.
From the OBGYN doctor, we learned:
  • We won't be in Albuquerque this summer as much as we thought. 
  • She will deliver us, and the delivery will hopefully be like any other.  It won't necessarily be caesarean, but there will be NICU doctors immediately on hand. 
  • She will induce us at 38 or 39 weeks.  I am less likely to deliver before that due to the fact that Caleb came late.  My pregnancy history is the greatest factor in determining whether this baby will come early or late. 
From the Perinatologist, we learned:
  • Our baby looks great!  They did what is called a "biophysical profile" on him via ultrasound.  It took them a very short time to find what they needed to see.  As I understood it, they were looking for the following four things, and they scored him accordingly:
  • Resistance in the Umbilical Cord:  Score: 2 out of 2
  • Fine Motor Skills:  Score: 2 out of 2  He was opening and closing a fist while they were looking. 
  • Practicing Breathing:  Score: 2 out of 2  He was hiccuping while they watched...which counts.
  • Amniotic Fluid Level:  Score: 2 out of 2
  • So, he scored 8 out of 8!!  We were so proud...and grateful!  :-)
So, it was a good trip...full of good news and good friends...and mostly a very good God.  We're so thankful for our God who cares for us through great medical doctors and great friends and family. 

Also, through this trip we were able to learn more specifics as to what we can be praying for.  I am hoping to create a prayer list on a separate page listed at the top of my blog.  Thanks again so much to all of you who are praying!  It means more than we can ever begin to express.


tasha said...

thank you for sharing all of that - we will definitely be praying and look forward to praying more specifically. praise God that he's doing so well!

Holly said...

Oh my gosh. For an information junkie like me, that post was incredibly thorough. I don't think I can think of anything else to ask you! THANK YOU for feeding my info addiction! I am SO glad the doctors appointments went helped you feel so encouraged. I am encouraged too. And, that little boy does look just like Caleb!
We are praying and will be praying during the months ahead. Soon we get to meet him! yay!

LINDA said...

Mandy, All your info sounds like really good news. This little boy has already been given a gift by having you as a mom!!
The biophysical profile results were perfect! Being a labor and delivery RN I understand all your info. If you have any questions or want to talk, call me! Love you!
The ultrasound pic is awesome!! He is adorable!!

Jo Jo said...

Thanks for sharing Mandy! I'll be interest to learn what we can pray for

SarahWhitney said...

My heart was so overwhelmed with joy as I read this post Mandy. God is SO good and He is taking care of every detail in this case. Thank you for posting so much and so perfectly. :) I didn't find any flaws in your medical info at all, and it was such great news. Baby Pelton is a trooper and I can't wait to meet him and to hug you. I love you so much!

Stephanie, Daneel, Avalon & Julie said...

That is such great news. God is SO good! Thanks for the update. We'll keep praying.

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