March 31, 2009
Little Carter is still having a hard time digesting his food. After consulting with the doctor, we've decided that it is best for him to be transported to Primary Children's Hospital in Salt Lake City. Although we absolutely HATE the idea of having him so far away, we know that this is really what's best for him. The specialists down there can start to help him with all of his issues, and we can really get the ball rolling on his recovery. We also got some more good news today. An Opthalmologist checked his eyes, and he believes that there is absolutely nothing wrong with his sight. This is a huge relief for us. We will update again after he gets settled into his new place.
March 30, 2009
Well, he started off the day a little rocky. At midnight he started to have a problem with acid relflux which was causing him to aspirate on the milk. This was giving him troubles with his breathing, so the doctor decided to stop all feedings for a little while. The fluid that he aspirated made the upper lobe of his lung collapse, so now he is struggling to breathe even more. The respiratory therapist came and gave him treatments of Albuterol to help clear his lungs, and she would literally pound on his chest with a little rubber tool to get him to cough the junk out. When I went in this morning, they were just starting his first feeding since Midnight. It didn't go so well because he started doing the same thing again, so it started to look like he was going to have to be transported to the children's hospital. The doctor decided that he would try a different type of formula first. They finished the feeding with the new formula, and Carter seemed to do a lot better with that. At six o'clock he had a second feeding with the new formula, and it looked like he was really improving. His lungs also seemed to be clearing, so we're hopeful that we are on the right track again. Who knows what tomorrow will bring.
March 29, 2009
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. :)
March 28, 2009
We welcomed little Carter into the world on March 27th at about 2:45 pm. He weighed only 4 lbs. and 11 ounces and was 17.5 inches long. Our little guy has a long road of challenges ahead of him, but we are ready to take them on, and will help him overcome all of the obstacles. Unfortunately we found out today that he has no hearing, but are optimistic that it may be improved with surgery. Also he will need to have a cleft palate and lip repaired as well as an ear reconstructed. No matter what comes of the testing over the next few days we love and adore our baby and are very proud of the achievements that he's already made. We love you so much little buddy, and can't wait to bring you home to meet your brother and sister!
March 22, 2009
My 30th birthday was on Saturday, and my very sweet husband threw me an amazing party. It's kind of strange to be nine months pregnant on such a milestone birthday because you already feel really tired and slow and when you add on the birthday it makes you feel extremely old. My birthday celebration actually started on Thursday when April took me out on a "date". She treated me to our own special restaurant, Applebees, and then took me to a spa for a pedicure. It was one of the funnest nights ever, and I had SO much fun. We were both new to the whole pedicure thing, but we conquered our fears together and can't wait to do it again. I would share pictures from the whole thing, but she has yet to email them to me (hint, hint).
On Saturday, we had the party. The kids and Michael started out the day by making homeade ice cream for the occasion. It was so yummy, and the kids loved mixing all of the ingredients. Michael got me a huge cake and actually made me blow out 30 candles which he will pay for in the future. He also served a giant sandwich from Subway. The kids had a blast playing on their swingset with all of their cousins and friends, and it was nice to hang out with everyone. I got a whole bunch of gift cards and the Twilight movie. Thank you everyone for making my birthday so special.
Posted by Team Carter Jay at 8:53 AM
March 17, 2009
We're getting down to the final weeks of our pregnancy, and things are finally starting to come together. We finished his room today, and it turned out so cute! Yes, that's a picture of Mikey on the wall, but if history repeats itself, Carter will look just like him. Michael says that there's no reason to switch the picture... we'll just write the name Carter on the bottom and call it good lol! Of course, I'll switch it out after he's born. I paper pieced the pictures above his bed, and was fortunate enough to find the robots at a local dollar store.
Overall things have been going well. Michael has been really busy at work, and is looking forward to some time off when Carter arrives. I went to the doctor on Thursday, and Carter is still sitting pretty high, and I've only dilated to a one. The doctor said that he plans to induce me on the 31st, or maybe the 2nd if Carter hasn't shown up by then. I go back on Thursday, and have been feeling a lot of pressure and pain, so we're hoping that I've made at least a little progress.
March 15, 2009
Last weekend was our last huge hurrah! before we turn into a family of five (that seems weird to say). We took the kids to the Living Aquarium in Sandy. They had seen a commercial on TV about it, and really wanted to see some sharks and stingrays. Jovie seemed a little concerned that the sharks might eat her, but we assured her that she would be fine. They had a touch pond where the kids could actually touch stingrays, but neither of them dared to. We all know that I have a serious problem with all types of sea life, so there was no touching for me either. Jovie seemed like she might get the nerve too, but chickened out in the end. If you ask her about it now, she'll say that we need to go back so she can touch the stingray. Mikey did touch a starfish. Actually he picked the darn thing up. I don't think that he realized that it was real. It was a really fun time, and the kids talked about it all week long. The highlights for them were the Octopus and the shark tank.
March 8, 2009
Last weekend Michael spent three days putting this monster together. He also did 99% of it on his own. I love being married to such a handy man. Needless to say, the kids and I are very thankful. Unfortunately, the kids haven't had a chance to play on it much because of the cold weather. They've managed to get an hour of play in here and there. Michael did an excellent job, and we're so proud of him for all of his hard work. Thank you sweetie!