March 29, 2009

Update on Carter

First of all, We thought that we should give a little more detail on his condition. We've had a lot of questions, and we wanted to clear some things up. Carter was born with a few birth defects that the doctors believe is part of what is called BOR syndrome. This is caused by a gene mutation and only occurs in 1 in 40,000 people. It's really just a "fluke". This isn't a confirmed diagnosis, because there is still a lot of testing to be done but it really seems to fit. So far his problems consist of a cleft palate, cleft lip, a kidney malformation, a paralyzed nerve in the right side of his face, and malformed ears. We were absolutely shocked when he was first born since we didn't expect to have any problems, but feel blessed that we get to take care of this little guy. So that everyone knows what's going on, I'm going to go over all of his issues one by one.

He is missing the outer ear on the right side, but has one on the left. The right ear has a hole for the ear canal, a tiny lobe, and smaller piece of skin a little ways away from that. The left ear formed a little strangely, but you would never know it unless you looked closely. From the testing that we have done so far it looks as though he is deaf in both ears. The ENT specialist believes that his hearing may be corrected, but just like with everything else we won't know until further testing is done. He can get a prostetic ear made, but it won't be for awhile so we wanted to share a picture of what it looks like now so that when you see little Carter you will know what to expect.

The cleft lip and palate will be easily fixed. He is going to have to drink from a special type of bottle made for babies with his condition, but for now he is on a feeding tube. This is one of the most common birth defects, and there are many kids that are born with it, but after the surgery you would never even know it. Also, luckily his cleft palate seems to be pretty minor.

The paralyzed nerve in his face make it hard for him to close his right eye tightly. The doctors seem to think that he may just outgrow this, and we actually have seen some signs that it might be getting better. If he doesn't outgrow it, there is another surgery that can correct it to help him with blinking.
His kidneys have fused together with a large one being on the bottom, and a smaller one on top. They are both sitting on the right side of his body. The good news about this is that they seem to be functioning just fine. The doctors don't think that he requires any surgery and have even said that there are a lot of people out there walking around with the same thing and never even know it. Carter is going to undergo another test just to be sure that they are operating properly, but so far so good.

As far as anything mental problems, or problems with his sight we still don't know. The doctor see nothing wrong with his eyes, and he seems to react to bright light so we believe that he can see. It's really hard to test sight in a newborn, but an Opthalmologist will be visiting him on Tuesday. We won't know about any type of mental delay until he is much older. Fortunately mental problems don't seem to be part of the syndrome that we think he has so we are staying very hopeful. It seems that most of his problems can be fixed with surgery, so he just has a very long road ahead of him.

Now to the stuff that really matters. We know that we are going to have to deal with all of the other issues I listed above, but the only things that matter to us at this point are his feeding and breathing. We have no timeline on when Carter will be home. It really depends on him. He needs to be able to eat from a bottle, gain weight, and breathe on his own. We are hoping that he will learn to do these things soon so that we can bring him home and consult with the specialists later about correcting the cosmetic stuff. The cleft palate contributes to his troubles with breathing and eating, so if it looks like he's not making any progress he is just going to be transferred to the local children's hospital to start on the corrective surgery of that right away. Although we really want to bring him home, we want him to get the best treatment possible, so if this happens we're ok with it. I'm going to try and update this blog daily to make it easier for everyone to know what's going on.

Here's the update from today: He's doing really well! We're so proud of how much he has accomplished in such a short time. He did have a minor setback early this morning. He was just using the prong mask for Oxygen, but he wasn't exhaling properly, so he has been put on a different type of respirator. He's still breathing on his own, but this type forces the air to the back of his throat. He absolutely hates it because it is big and bulky, but it is also what is best for him right now. When we left him this morning he was having some trouble with some congestion in his throat and chest and he sounded absolutely horrible. He was also fed 6 ccs, but only kept down about 2. By tonight he had improved dramatically. The congestion seemed to be going away, and he actually kept down 8 ccs out of a 9 cc feeding. As we have learned, a baby in the NICU can change their status in a matter of minutes. Today was a great day for me because Carter actually opened both of his eyes and looked at me for a few minutes. He seems to be much more alert today. We're hopeful that he'll continue to improve, but know that he could slip back a little tomorrow. Let's hope for another improvement day tomorrow. :)


The Sessions Sessions said...

He is so beautiful. We love him so much. We are all optimistic!

Laurel said...

We'll be praying for him Heather. He is so cute, and looks just like your other two!! Keep us updated!

Angelic said...

Continued prayers.

pmason said...

Dear Michael and Heather,
Grandma just called a few minutes ago to let me know that you had had your sweet little baby boy. First, Uncle Mike and I would like to congratulate you on the birth of your son Carter. We will be praying for his health and will be thinking of all of you. We love you all very much.
Love Always, Aunt Patti