Carter's Little Room

Carter's Occupational Therapist thought that a "little room" would be beneficial to Carter developmentally.  It is literally a "little room" that makes Carter feel safe in his environment while giving him a lot more feedback because every movement he makes will echo throughout it.  One of these can cost over $1000, but my very handy husband built him one and the best part is that it only cost $50!  We've been trying it out a lot the last few days, and I must say that it truly does work.  Typically, you would hang toys from the top for a baby with vision impairment, but for Carter we've been putting toys near him that he can hit.  Sometimes we put it over his play place as well.  It is sitting on top of a resonance board that his vision specialist brought which creates even more noise. The idea is to get him to start realizing that he can make things happen when he moves those little arms and legs. Here's a link to a website that gives detailed instructions on how to build one: http://www.wonderbaby.org/articles/play-area.html#how-make , but for the record.... Michael made up his own plans.  I just have to give him props where they are due :)

Welcome To Our New Blog

Thanks for checking out Carter's new blog!  We wanted to shine his little light throughout the world and this seemed like the easiest way.

Carter's had a good couple of days. I weighed him today and he's up to 11 lbs! He had an appointment with his Occupational Therapist who was pleased with his progress. He wants us to concentrate on strengthening Carter's tummy muscles so he can roll onto his belly. We're also still working on getting him to bat at toys. Later in the day we had an appointment with Audiology. Unfortunately, we didn't learn anything new. We just scheduled an appointment to get another thorough hearing test called an ABR done on October 6th.

Teeth?! Really?

OK, so I've been terrible about Blogging lately.  Sorry. Here's the update on what our little man is doing.

First, Carter was on steroids for five days to try and strengthen his airway.  They have seemed to work and he's doing much better although he still has an occasional bout with it tightening up.  Those moments are really scary so we're glad that they are declining although we would be happier if he didn't do it at all. We're just going to give him more time to heal.  The weaning of his Oxygen is going pretty well.  He's comfortable at a 1/4 liter which is about where he was way back before the Heart Cath.

Developmentally Carter has been doing some VERY exciting things.  He's started to focus on objects and turn his head to follow them.  He's also taken a liking to the TV (especially Football....not sure where he got that from lol!). As I type this, he's playing on the floor and looks like he's so close to rolling onto his tummy. His eating has been going well, and he weighs about 10 lbs. 10 ounces now.  The last week I've actually felt like I've had a "normal" baby for the first time.  He seems to be like a 3 month old which is about where he should be for his adjusted age.  Our next feat is to get him to start batting at objects.  He seems to be so close to doing it.

Today while I was playing with him I noticed a little white slit on the top of his gum.  I can't believe it, but our little guy has actually gotten his first tooth!  It is on his upper right.  I'm not sure which tooth it is because of the way his gum is shaped on that side, but I'm guessing it's his front right.  He's growing up quickly now!

On Monday he has an appointment with an Audiologist to find out how his hearing is now that the tube in his left ear has been placed. We're hoping for good news.  It would be nice if his hearing was excellent because it would mean that we might not have to do anything for the right ear.  We can only pray!

Mikey and Jovie have been enjoying school.  Life is certainly a lot busier once your kids are old enough to have activities.

God Is Good!!!

Thank you, thank you, thank you God for giving our little boy hearing! Today was a HUGE win for Carter. We got the results of his hearing test, and he has hearing in his left ear. The audiologist says that he can hear a typical conversation, but nothing quieter. She tested his ear drum for fluid, and says that he has a lot of it. That means that when he gets his ear tubes put in (to help keep the fluid drained), it's very possible that he'll only have a minor hearing loss. His right ear doesn't show any hearing, but it's possible that the fluid could have something to do with that as well. One is much better than none, so we are beyond grateful and thrilled at the same time.

He's still working toward the picnic, and is down to minimal settings on his oxygen.

The Big Move

Carter was transported to Primary Children's Medical Center by ambulance today. It was quite the process to get this little guy into a small incubator, and get him there safely. He definitely enjoyed the ride, and slept for most of the way. The transport team was very sweet, and even took some pictures with a disposable camera of his ride down south. After I get them developed, I'll post some pictures of it. When we arrived, there were a slew of doctors waiting to see him. It's amazing how much faster paced this hospital is, and you wouldn't believe how many tests and exams he had today. He has a few more scheduled for tomorrow. The doctors decided to take him off of the other type of ventilator and put him on a high-flow prong mask. He definitely liked it a lot better, but it's pretty likely that he'll be on the old mask by tomorrow morning. Since it's a lot easier to hold a baby in a prong mask I got a chance to hold him for the first time since Friday night. It was awesome, and I wish that Michael would have had the chance to do it too. Unfortunately, Carter decided to have one of his episodes of holding his breath, so our cuddle time got cut short. The doctors also noticed that he has a dimple on his lower spine which they said could cause him to have trouble walking, or possibly paralyze him. Luckily, the ultrasound showed that this is not the case, and he shouldn't have any problems in that area. All in all, it was a pretty good day, and we really feel that he's going to get much better care at this facility. Tomorrow they will be doing a test on his Kidneys just to be sure that they are working properly, and he will also have a tiny camera check out his ears and throat. Hopefully we'll have more news on his hearing. Thank you all for your continued prayers and support.

Heading South

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.

Monday Update

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.

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. :)

Carter Jay

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!

Carter Jay

We just got back from our appointment with the Perinatologist. Thank god that the ultrasound came back clear, and everything looks great. Also we found out that we've been blessed with another boy. We had already expected that, so it really wasn't much of a shock. I'm so relieved that our little Carter Jay is healthy, and he is growing right on target. We can't wait to meet him, and hold him in our arms. Until that day, we (OK I) will be shopping for all of his needs. Now to figure out which bedding we want to do.