Baby Mine

I have had a hard time this week with learning a little more about after delivery.  I was aware that I would not be able to hold the baby once delivered since he will be put on a ventilator.  I had in my head that I would sit there and rub his arm or hold his hand and talk to him since I could not hold him.  Well, after reading blogs from other CDH moms, it looks like I do not really get to touch him or even really talk to him.  The reasoning behind it seems to be that babies are easily stimulated and these stimulations that throw off CDH babies vitals - i.e. blood pressure, breathing, etc.  Though I did NOT like finding this out, (I still need to confirm with my doctor this is how things are at our hospital and I will next week at my next appointment) I would rather KNOW going into it that I would not be able to touch him versus finding out once I arrived at the NICU. 

During this whole pregnancy I keep comparing myself to Dumbo's mom.  There is so much I want to do for the baby, but there is only so much I can do for him.  He is going to have to do a LOT for himself. 



Comments

Is was brought to my attention on this blog the comment section was set so that you had to be logged in to leave comments.  I have adjusted the settings so that now anyone can leave a comment.  I have talked to multiple people who tell me they follow the blog; however very few people leave comments.  Hopefully now everyone will be able to do so!

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them.  When you think about it, what other choice is there but to hope?  We have 2 options, medically and emotionally: Give Up or Fight Like Hell.”

-Lance Armstrong

Diagram

This is a diagram of what the baby’s chest cavity looks like after our last appointment.  Dr. Yang sketched a diagram, and I then tried to put it on the computer.  I am obviously no artist.  This is MY SKETCH that I tried to do from his drawing.  I am not 100% on the placement of the stomach, but this is the general idea of what we are looking at overall.  (You can click on the diagram to make it larger.)

The rise and fall of the chest......

Since our CDH diagnosis, it amazes me how differently I look at some things in life.  I find myself sitting here this evening watching Grant sleep peacefully next to me on the couch (I’m hoping for a snow day tomorrow, otherwise he would be in bed).  His chest rises and falls.   He breathes so easily.  Hm.  That is simply something that I took so for granted before this most recent pregnancy.

I know my next baby will not breathe as easy as his brother.   In fact, he may be able to breathe at all on his own.  Not an easy thing for any parent to think about.  

But tonight the baby still breathes easy as I breathe for him.  Breathe easy little one.  Sleep tight.

Round #2 at the Fetal Care Institute

My most recent round of appointments went very well.  We had a lot of positive results from the testing done. Though let’s keep in mind, as the doctors tell me, there are no guarantees with CDH. 

First of all we had yet another upper level ultrasound.  They then compiled this ultrasound information along with my last MRI information to come up with some numbers.  The baby’s right lung is the larger of the two.  The only organ really obstructing the development of the right lung is the heart.  Since the heart is pushed to the right side of the chest, it is getting in the way of the right lung.  Currently the right lung is working at approximately 70 – 80% of a normal lung.

Then there is the left lung.  The baby’s hernia is on the left side.  Therefore the stomach and intestines have migrated up on this side of his chest.  This lung is VERY SMALL.  It looks to be about 1/8 of a normal lung in my opinion.  On the ultrasound it just looks like a piece of lung versus an actual “lung”.

When you put the baby’s lungs together, they work at approximately 43%.  Of course you want your baby’s lungs to be at 100%.  However, for a CDH baby, 43% is on the better end of the spectrum.   This means at this time we are NOT looking at any fetal intervention surgeries.  This is a GOOD THING.  They only operate while the baby is in utero if they feel the baby’s chances of survival are on the lower end.

We also had an Echocardiogram done of the baby’s heart.  Since the heart is displaced, they need to make sure it is developing as normally as possible.  Obviously with the extra organs in the chest cavity, it can affect the development of the all the organs that are supposed to be up there.  Luckily in my case, the baby’s heart seems to be doing quite well!  Though out of place, it “seems” to be very close to a normal heart.  I say “seems” because there are parts of the heart that may be affected that we will not know about until after delivery.  However, overall the heart is in very good shape; which was wonderful to hear.

The doctors and staff at the FCI work wonderfully as a team.  They do an excellent job of coordinating my time there.  I feel that each member of the staff serves as a piece of the puzzle that makes up the Fetal Care Institute and allows it to run as smoothly as it does.  They realize that parents in situations like mine are dealing with a LOT and really try to do their part to make my time there comfortable and organized – which is much appreciated. 

Since my test results all where status quo, I go back in 4 weeks for another round of similar testing.  Let’s hope that those results are similar to todays!!!!!!!!!!