Rehab

Carter fell asleep during his rehab visit, that sure is hard work.

4 Months Old

We just went to the doctor for Carter's 4 month check up, and all is well. He is getting so big and strong. He weighs 15 pounds and is 26 inches long, he is doing absolutely wonderful. Most of his day is spent laughing at just about anything that happens. Sometimes we can't even get through our bottle because we just want to play and giggle. He is sleeping about 9 straight hours at night, how lucky are we.

We have a few therapists that work with him all the time. We have a vision therapist that comes to our house once a week for about an hour and works with him to help him focus. She's been coming for a month now and she said that Carter wins the "most progress in the shortest amount of time" award. We also have a physical therapist that comes every couple of weeks to help us with our head and positioning. She's not too great though, she says wacky things, we don't love her.

When Carter was first born he failed 2 big hearing tests. The hospital sat us down and told us that he will be deaf forever, and sent us on our way. It was terrible. We took him home and always treated him like he could hear. About a week later he started responding to our voices and different sounds so we knew deep down that he could hear. Well, we went in and did another test about 2 weeks ago where they hooked up some sensors to measure his brain waves to different sounds. He Passed the test just fine this time. They said that his hearing was completely normal now and everything in there looked great. Apparently it was just the pressure on his ears. We are hoping that his vision problems have a similar outcome.

We went on an outing to brunch on Easter morning with the family and he loved it. We were a bit nervous and kept him in his car seat the whole time, but it was a start.

Carter is such a happy guy with the sweetest little spirit. He's been such a delight and a wonderful part of our family. We are enjoying every minute of every day, we hope to bring him around more often. We thank our Heavenly Father every day for our blessings, he's just doing great.

3 Whole Months

Our little angel is doing great. We just celebrated 3 months old! Carter thought singing Happy Birthday was just about as funny as it gets, he giggled and giggled all through the song. He is super fun right now, his little personality is sure showing. He just smiles and giggles all day long, well in between all those feedings and naps, what a hard life. He's getting so big, Cassie let us borrow her gorgeous bassinet when he was born and it worked so well and the other night out of the blue he didn't fit in it anymore. We just upgraded to the next size clothes and those cute little diapers are now not so adorable. He loves being sat up and looking all around oh noisy toys are pretty cool too. Jordan gets the best laughs and smiles, he's a great big brother. We are really excited for cold and flu season to end, we'll be out and about more and ready for all those visitors. Thank you for respecting our "no sick visitors" policy. Hopefully it will get a bit easier soon. I am going to post pictures more often because he's just too cute not to. Keep those prayers coming we're loving all these blessings.

Family Updates:

Hi everyone, good news this time. Carter is doing great. We've been home for 2 weeks now, he's off oxygen and looks so good. He just started smiling so big and often, it just melts our hearts. His eyes look alert all the time and he's getting so strong. He is eating good just check out those 2 chins. He has hit all of his milestones so far, he has exceeded all of our expectations! He is starting physical therapy soon to help strengthen his neck muscles to hold up that heavy head. So all is well so far. Jordan's birthday was yesterday, he's 11, I know, he's getting so big. We are almost the same height, I think he's going to be tall like his uncle Ben. Well thanks for all the wonderful calls and concerns while we stayed at the hospital this last time, we really appreciate all of the support you've shown to us.

We are still in the hospital (see below for full story) but things are looking up. Carter had his surgery on Friday (Jan. 4th) to get his new shunt put in. This one is on the other side of his head, but it looks good. He did good during the surgery and everything was looking great for us to go home the next day. He woke up Saturday with a cold. He was coughing and his eyes looked a little sick. The Neurosurgeons came in that morning and said that we could go home. Our cute nurse said that she was going to send his stuffiness off to be tested and it came back RSV. So we unpacked and settled in for another few days. All of our hospital neighbors have RSV so it wasn't a total surprise that he got it. All they do for that is give him some breathing treatments (kind of like asthma treatments) and suction his yuckies out of his nose and give more oxygen and then just wait and see how he does. The doc's came in this morning and said we can go home tomorrow (Wednesday) if he continues to do good. He's hanging in there and being so very brave. It's going to be nice getting him home where he can finally relax.

Not So Great News

We are back in Primary Children's. Carter was doing so well the few weeks between hospital stays. He was on room air and off oxygen. He was eating well and doing great. We brought him in on Saturday Dec 22nd, just because he had a slight temperature. I called his doctor and he said to rush to the ER and asked if we needed an ambulance. I thought he was crazy, an ambulance for a temperature? We loaded up and came into Primary's ER. They did a few tests, doctors rushed in and took up to the Intensive care unit in critical condition. The tests found a shunt infection and a staff infection. On Sunday he had to get his shunt taken out and a temporary external drain put in. Its a tube that goes from his brain to a bag to collect the spinal fluid. They started an aggressive antibiotic treatment and they test this fluid each day. It has to test negative for infection of 14-21 days and then they will put his internal shunt back in. Well Sunday after they put in the external drain, we were taken to our room in very stable condition. The nurse came in and gave him a dose of Morphine for pain. His stats (heart rate, oxygen rate and respiratory rate) started dropping right away and he went into cardiac arrest. His heart stopped beating and he completely stopped breathing. They called a code blue and about 50 people came running. They had to give him chest compressions and ventilation tube to breath for him. They called for a drug that reverses the effects of morphine. They ran that up gave it to him and he snapped right out of it. He was stabilized and taken in extremely critical condition back to the Intensive care unit. That night he had a terrible time breathing. He would stop breathing for 30 seconds at a time, take about 6 shallow breaths and stop again. He did this for about 2 hours then he started to have mini seizures. The seizures lasted for another couple of hours, then as fast as all this came on it stopped. These were all terrible effects of the morphine he was given. It took about 15 hours to get out of his system. If that's not bad enough, during his code they accidentally yanked out the drain from his brain. So Monday morning (Christmas Eve) he went into surgery again to replace the drain. They gave him another narcotic drug named Versed which is a popular generic narcotic commonly used in surgery, they gave him the slightest dose and he started coding again. This time his heart didn't stop but he completely quit breathing. They had to stop the surgery and bag him again. They gave him the reverse drug for Versed and he again snapped right out of it. So in a nut shell, he cannot handle any form of narcotic. He does fine with general anesthetic but no narcotic drugs, which is so sad because we have several surgeries and he cannot have anything stronger than Tylenol for pain. The next couple of days (including Christmas day) he was considered in critical condition. He had to get a PICC line placed which is an IV that goes directly into his heart for medication and fluids, usually they put them under sedation but Carter cannot handle that because he had coded twice so they had to place it while he was awake, what a nightmare. It was the worst experience of our lives. We were then moved to a normal hospital room where we are just to bide our time here. He has to test negative of infection every day before they will put his normal shunt back in and we are on 7 days today without infection. We've had a few ups and downs in the past few days but nothing compared to what we went through the first few days. We will be here for 2 to 3 weeks this time. He's testing low for his blood count and just today received a blood transfusion and did awesome. It should give him more energy and make him feel better. He already looks much better. They are planning on replacing the shunt on Friday (Jan 4th) and if all goes okay we could be home by Monday. I'll keep updating this site through out the week. Please keep him in your thoughts and prayers.

Update

Hi Everyone,
I know, I know... sorry for not updating until now, I'll try to do better. Well, we came home on Monday Nov 26th from the hospital at 6 days old. He had his shunt placed on Friday Nov. 23rd (2 days old) and that went so well. It took a little less than an hour and he was out of surgery. In the recovery room he already looked great, his eyes were focused and his head had already gone down in size. The neurosurgeon said that the surgery went so well and Carter did great. We stayed at Primary Children's for a few more days. Carter was having a hard time eating, maintaining his temperature and keeping his oxygen up. So we came home on machines and monitors. He had a feeding tube called an NG tube that goes into his nose, down his throat and into his tummy. He was order to eat what he can by mouth and the rest we had to feed down his tube. He was also sent home on oxygen and we were given a pulse/ox machine to monitor his oxygen levels and heart rate. He had a bunch of great days eating and last Tuesday we were able to remove the feeding tube. Hopefully soon he can be taken off everything, we have to keep his hands covered, he's already learned to rip out all of the tubes. Developmentally he is doing everything that a 2 week old does. He is just doing amazing. We have received a lot of calls for you all to visit. We would love the visitors but his doctors say that he is not strong enough for kid's to come visit. All of his doctors and nurses that prepared for him say that he is indeed our miracle baby! We, however, believe that miracles have little to do with him. We know that he is our blessing and all our prayers have been answered. Thank you to all of you, our family and friends for all the prayers, love and support you have all shown for our family. The power of prayer works he is proof!