Monday, February 16, 2009

I'm sorry, did you just say surgery?

So we went to Caden's cardiology appointment this morning at Phoenix Childrens Hospital. My pediatrician had told us that is sounded like an innocent murmur so we were not worried about the appointment at all. We get taken into the room and they take his blood pressure in both arms and legs; I should have caught on when the tech kept trying to get the pressure in his legs. She hooked him up and did the ECK then went to get the doctor who came back in and completed the exam by listening to his heart and checking the pulse in his arms and legs.
Next he tells us that the murmur doesn't sound normal and the pressure in his legs is significantly diminished compared to his arms and he wants to do an ultrasound of Caden's heart. We get ushered to the next room and they do an ultrasound that takes 30 minutes and is extra nerve wracking because the doc is present and talking to the ultrasound tech in their own language with lots of "oh ya I see that too, go back again...yep I was afraid of that....."
Next back to the exam room to wait. The doc comes back in and tells us that Caden's ultrasound looks good except that he can't see the one part of the heart he really needed to see because what he suspects is that he has a narrowing of the aorta. He then shows us a diagram of the heart and where the narrowing most likely is and why he couldn't see it on the ultrasound. Next he tells us that we need another ultrasound in 2-3 weeks to see that part of the heart to determine is he does in fact have that narrowing. Then we can discuss the options which are only surgery given his age.
So my day started with a quick trip to the doc for a routine "just check it to be sure" appointment and quickly had my head spinning. March 9th we go back for the second ultrasound and hopefully they can see the full heart and it's normal, which is great but then leaves me wondering why he has such low blood pressure in his legs? Until then we are praying like crazy, Caden's getting a blessing and we are going to fast.

Also I have a question for all the mommies who read this post. Caden started fighting his bottles 2 weeks ago and we can't figure out why. He is on Prevcid for reflux. We have tried different bottles and different sizes of nipples. We've tried different positions, tv on, tv off, walking, bouncing, rocking and nothing helps. He'll take the bottle get about a 1/4 ounce down and the kick out the nipple and scream. We take the bottle out and he starts rooting while screaming. The feeding will take an hour and we're lucky if he gets 2 ounces down where before he was taking 4 ounces. He eventually passes out and I'm in tears. Does anyone have any suggestions or is this just a phase? I need a light at the end of this tunnel!

Here's some new photos DJ took this weekend of me and the little man.






11 comments:

Christine #2 said...

Oh my stars! We'll be praying too.

The pictures are gorgeous too btw. You are a hot momma!!

Teri said...

Those pictures are so precious!! He looks so mature :) We will pray for you guys as well, I am sure as parents your worry meter is high! Just remember he is being prayed for by many!

zebby said...

I wish I had some advice for you, Maggie just started doing the same thing and The only thing we can figure is she has some sort of stomach bug. We gave her pedialyte today and she drank that right down. We're going to the doctor on wed so if we find out more, I'll let you know. I'm sorry about Caden's heart, my nephew has the problem with the Aorta and they are still waiting to do surgery. Hopefully on your next visit everything will check out fine. I miss you guys TONS!!
Liz

Kendra said...

We'll definitely keep you in our prayers for both situations.

Both my babies were very colicky, and had trouble eating. I'm sure you've heard about every possible colic remedy out there. In my experience, none of them work except for Catnip & fennel. You can get it in a liquid form at Mustartd Seed Herbary. I put it in their bottles, or just dilute it with a little water and use a medicine dropper to put it in his mouth. IT WORKS. It may just be that his little tummy is upset. Formula is really rich. The other possibility is yeast. He may have a yeast infection, which is common in babies of diabetic mothers. They get it on the way out of the womb. The high sugar content of formula feeds the yeast. There is something you can give him for the yeat, but I can't remember the name of it. If you go into Mustard Seed, they will know exactly what it is. Some people think Mustard Seed is expensive, and it is compared to others, but for this specific situation, They have just the right blend of things you need, it's very high quality, and they are extremely helpful.

Give me a call if you need any more info, or any help.

Amie said...

Will be holding my breath til the 9th! And wow...What great pictures.

Casey Lu said...

Cali has been doing the same thing since we were told to supplement with formula. We tried the Smillac Advanced and all she did was scream. I think she either has a sensitive stomach or was having severe gas cramps (wouldn't be my first kid with this problem) SO we went and bought the orange Simillac which is for Sensitive stomachs and she seems to be doing A LOT better with that. Hopefully it stays that way. I am SO sorry to hear that his murmur is serious! I will definitely pray for him!!! Those pictures are so beautiful!!!!!!!! I LOVE all of them but especially his feet, I have a soft spot for little baby feet!!! He is so darling!!! I can't wait for him and Cali to meet! :)

wittygal said...

I am so sorry to hear about your doctors appointment. I hope his next visit is better. I didn't have any advice to give on your babe but I read every one else's advice and girl you have INCREDIBLE friends. I loved your pictures and my heart reaches out to you and your wonderful looking family.

Natalie said...

Wow! That's a lot! Cute pictures! Hope everything goes well on the 9th! Yikes! Poor little guy!

My kids never would take a bottle, so I have no advice to give in that department... other than, Is he on a special formula? If not, maybe he doesn't like the formula and you should try switching. ?? I don't know. Hope that gets better too! Rest assured that when he's hungry, he'll eat! It's just frustrating. :(

JWalkers said...

Jameson had the same problem. He takes Zantac for acid reflux, Similac Sensative R.S. formula (it only comes in liquid form), and Baby's Bliss Gripe Water (Fennel & Ginger)our pediatrician recommended it. We gave it to him before he ate, fed one ounce of formula at a time, burped, rested then repeated. Feedings took about an hour then he would sleep for an hour then back up to eat. He is still on the special formula and every once in a while the gripe water. He rarely need the santac now. Our ped said that because he was so early his digestive system wasn't as strong and developed as a term baby. I know it stinks but all you can really do is ride it out. I know that is the LAST thing you want to hear when our baby is screaming as if tehy are dying and you can't fix it. You are in our prayers. Let me know if you need some relief I would be more tahn happy to come over and lend a hand so you can get some rest. I could not have survived if not for the help of others! Take care!

Jenna said...

Oh Christine, I'm praying for you! I hope that the next ultrasound will show everything is just fine. I love those pictures, they are gorgeous! As far as the bottle goes, Natalie fights it like crazy but just keep being persistent and it will get better!

Torrie said...

Love the pictures and so sad to hear about the little man's heart troubles. These things are never easy to go through. My prayers with be with you and your beautiful family!