New heart diagnosis

Hello All,

We took our journey to Primary Children's Yesterday for our every 6 month heart check for Shane. I was worried most about how Shane was going to do with a 45 min Echo with some strange man putting a weird device with gel on his chest that long. Luckily they let him sit up next to me for most of it while we distracted him with suckers, apps on my kindle and blowing bubbles. He did so well! He probably had about 3 or 4 suckers but anything to keep him from crying!  I laid with him for the other half of it and he also did well too. Luckily Grandma Cox was watching Jeremy so mom and dad could focus just on Shane and keeping him happy. These appointment can get long! our appt was at 2 and we got out at 4:30!:) After the Echo is done we meet with his heart doctor. She said the echo looked good and the left side of his heart looked a little larger ( she is thinking its due to the muscle that didn't pump his heart well earlier) She wasn't concerned by it and while listening to his heart she heard something she hadn't heard before. So Shane now has a BAV or Bicuspid Aortic valve defect. She also was not very concerned with it and is a very normal thing with babies with a pinched aorta what Shane had.  Overall Shane got a little weary when some doctors came in but stayed his happy self for the most part and snoozed on the way home in car:)  So all is well and we will see his heart doctor in another 6 months untill they feel comfortable doing every year. Now we just got to figure out his reflux stuff. Oh well he will be 19 months tomorrow and he brings such joy in our lives! 

Love,

Emily and Nathan

Upper GI procedure

Hate watching my baby suffer. Had our upper GI today where they x Ray Shane has he is drinking and watch it as it goes down stomach to intestine.So they lay Shane down and have to hold his arms and legs still as they watch the stuff go down. Since Shane is Shane the stomach wasn't releasing contents to the intestines like they wanted to so after about 20-30 mins of waiting as Shane is screaming we decide to put feeding tube down to intestine so it's faster well it wasn't that fast as the tube had a mind of its own while Shane is still screaming. We finally got the x Ray they wanted after about 5 mins total of radiation! Since the stomach didn't release its contents fast into intestine they are recommending he get his stomach muscles tested because it didn't do what a normal stomach would do. It's so hard to see him suffer and still got no answers to reflux!!!!

Family update

Hello all,

Seems like everyone was doing a little update so I figured I would join the club. First all we on Tuesday went to a funeral for Wyatt a nieces two month old baby on Nathan's side who was found not breathing had a dead colon and intestinal infection but ultimately was taken off life support for brain dead during the time not breathing. This has been a very sad event in the family. Please send prayers of comfort for their family. This niece was adopted by one of Nathan's brothers at the age of 16. Was baptized and sealed to them but later on rebeled ran away when she was18 got married and had a baby. So we are hoping this will help her faith. Jeremy is now a month old and only waking up one to two times a night. I'm still missing my sleep greattly but surviving. Having the two babies hasn't been as hard as I thought which is good and overall Jeremy is a pretty good baby,cries when tired or hungry like a baby should. Shane is 16 m now and is such a cute kid just soaking up everything and trying to do more things on own. He just cracks me up and loves to analyze Jeremy's toes eyes ext. We went to shanes ENT doc and when they scoped him they still saw acid coming up from stomach so we are going to see a GI specialist for that to see why still doing that. They also poked one of his walls in throat while scooping and their was no response. So they are thinking that's why he chokes on food a lot because when food goes down he doesn't feel the food. So we are going to go see feeding therapist for that to help him and see if he aspirates just a tiny bit they will prob do another swallow study too I bet. He also got a chest x Ray when we went too. I'm so ready for all this to be done.oh we are also seeing a PT because his head tilt came back. I know it's not life threatening but I just want to have a normal kid please! I don't think I left any thing out anything Nathan is still loving his job doing health savings accounts this job is actually less stressful. We love fidelity and are veryblessed. We are barely making it with me staying home but some how it works out. We also are blessing Jeremy on May 5 th.

Jeremy has arrived

   We are pleased to announce Our 2nd child Jeremy was born. He was born 2 week early,
at 4:19 am 6 lbs 7oz, 19 1/2 inches long! I started feeling contractions at about 7:30pm

 and went to the hospital at about 11pm and with one 1/2 push's Jeremy came out! we are all doing well so far!!!!! love to all we are very tired!:) We are excited for what raising two children will be like and Shane seems to just ignore him but when Jeremy cries he gets curious he comes up to touch his feet and hands. Its fun having a baby in the house again especially a healthy one. We did have a scare when the pediatrician said he had a "murmor" I demanded we get an echo. They did the echo and all came back great! We were relieved. Jeremy also decided to scare us and choke on his amiotic fluid often after he was born. There was a time where he stopped making noises and called nurses in as quick as we could. We learned some tricks to help and then went home a couple days later with no issues. 

Another HEART/ENT appointment.

We just had two very important appointments in the last week. On the 2nd we went to see Shane's cardiologist he got his usual echo and EKG done. I don't know why but I was really worried this appointment. I bet it was because almost a year to that day was his first heart surgery. Anyway the doctor said everything looked great and he had normal heart function. They we so amazed at how big he was  and of course how cute he is! So this was all great news!!!

Next we went to see a different ENT this ENT is a vocal surgery specialists that we were referred to because Shane's vocal paralysis was not improving. They did a normal scope to check his vocal chords and noticed still ,that stomach acid is irritating his larynx and throat. They gave us zantac  on top of his normal anti reflux meds and hope it improves. Otherwise we might have to see a GI specialists. As far as his paralyzed vocal chord goes, it healed in a position where shane's voice is loud enough that they will not have to do surgery at this time. He says that Shane's voice is still not in normal vocal range but fine. We are fine with that too!!!!  

Shane's cardiologist also recommended we get a fetal echo done at primary's so we will do that sometime soon. We are almost 28 weeks now still due April 4th and still debating the name Jeremy. We continue to feel blessed daily and hope that it is given to all of you too! 

Survival of a year Celebration! Shane turns ONE!

  We have had quite a year in the Cox household and we are definitely celebrating! Although Shane's offical birthday isn't until December 19th. We are celebrating it the saturday before. Tons of Aunts and Uncles cousins and Grandparents were able to attend. We played Pin the patch on the heart, and dice game. Ate lots of pizza and salad. Then of course Shane was able to open up his presents. What a spoiled but brave warrior to deserve this. It was a great  special time we could reminisce on the heart aches of the year, but celebrate that we still had Shane with us and that is truly something to celebrate. We had all made it a year and the angels above sang. 
 
Luke 1:37 37 For with God nothing shall be impossible

 

• .

Ent/ Helmet visit

Today we made our journey once again to Primary’s for our check up with Shane ENT( ears nose throat doctor) we also visited his helmet doctor don’t know what they are called.

                At the ENT they put a scope down his nose to check vocal area / airways and well there had been no improvement in his left paralyzed vocal chord and his larynx was still red and swollen. The doctor is happy that he is not getting   Pneumonia or spitting up so the swollen larynx is kind of puzzling and obviously the acid reflux meds he is on are not working as well, although he needs to continue taking it. The doctor wanted to see more improvement after 7 months of healing from his open heart surgery. So in January will will see a different   surgical specialist that will decided if surgery is needed to repair his vocal  chord.  As I heard it they will connect a nerve from Tongue to vocal chord ?Of course we don’t want this and we will ask all the questions we want if it comes to that point but it’s hard to judge at that point a Year old what his voice/ speech outcome will be with surgery. Not to mention the after affects. We will cross that bridge when it comes and once again this is not life threatening so we can handle it!

                Next we went to go get Shane’s head checked out to see his helmet shaping progress. His head is making improvements but 4 more weeks or more is still needed before the helmet comes off. I’m really fine with that seeing as it does not bother him or me.

                Finally after our adventures in salt lake we ventured to my ob for those who didn’t know we are expecting our 2^nd child and we found out IT’S A BOY ! Nathan just grinned and smiled . I’m still in denial that we are having another baby but as I’m starting to show a little, it will  soon hit me.  I’ am  grateful though the lord decided to send another bundle our way and we hope he is healthier than Shane.

            So I guess now we need to pray for  Shane’s throat and vocal chords seeing as the lord has healed his heart well let’s have a throat /voice miracle too.I also attached some very current pictures of shane will helmet on and off.

Love,

Emily