Today

12:30- We just sent Carter off to the OR. We are excited that Carter WILL get the treatment he needs. We are anxious to know what that will be. The day started out great. We were able to play soccer with Boston in the backyard this morning and the best part was for the first time in almost three months the four of us were together for the first time as a family. Sure there was a door separating us, but the smile on Boston's face was so worth it!


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Big day

Turns out tomorrow is the BIG day. So big that I have been trying not to throw up all day I am so nervous. We told the doctor yesterday that we wanted them to be aggressive about getting the ENT in to see what is going on. When I got to the hospital this morning the doctor told me that she put in a call to the ENT Dr. Rone and told him to figure out his schedule so that we could fit Carter in sooner than later. He got back to her about an hour later and said tomorrow at 11:30. When she told me that I was very happy. Then she went on to tell me that if what he finds will require surgery he will go ahead and do it right then. The surgery they are talking about is a trachea!!!! If your shocked then I am sure you can only imagine my shock. She said that if what he sees is something that wont heal in the next 4-8 weeks than surgery will be the answer. So three things that could happen that we know of

1-They find nothing and we do just need more time

2-They find that he just has a narrow airway. They would do surgery and basically put a stint in to widen his airway. They would go in through his neck just like trachea surgery.

3-They find that he has scar tissue built up or a crazy amount of inflammation and they would do put a trachea in. The scar tissue would be from his heart surgery and him being on the ventilator for such a long time.

This will be Carters first time out of the NICU. Something about the OR room and my 3 month old son makes me sick.

I was not prepared for this at all. So somehow in the next 20 hours I am going to have to figure out a way to deal with it all. The thought of Carter being put through all this makes me so sad. He is still so tiny. We are glad that we will get answers tomorrow and that if he does need a trachea we are finding out tomorrow instead 6-8 weeks down the road. I asked the doctor about the longevity of the trachea and she said that it all depends on how long he would require ventilator support (they would hook it up to his trachea) and how long it takes for his airway to heal. Could take 3 months could take 2 years. My mind is going crazy thinking about the possibility of doing trachea care myself, nurses living in our home 24 hours a day, how will this effect Boston, what are long term side effects for Carter, and everything else you could think of. Wish us luck. I will try to update tomorrow.

Answers

Today we were supposed to get answers. We didn't.

We have been told for the past two weeks that today an ENT would come and take anywhere from 30-45 minutes and scope out Carter while he was on CPAP to figure out exactly why he wasn't lasting off the ventilator. When we got to the hospital our nurse Susan who is my absolute favorite had his IV line ready and was just waiting to hear back from the ENT to see when he would arrive. The respiratory team got ready to ext abate Carter and was just waiting also. We finally heard from the ENT that he would be there in ten so go to go ahead and take him off the ventilator. They ext abated Carter and put him on CPAP









He was doing surprisingly well. His heart rate was great and his saturation levels were awesome. Dr. Rone the ENT came in with a little cord that had a magnifying glass on the end. He put it down his throat and looked around for about two minutes. He came out and said it looks like he might have some swelling in his airway, his left vocal cord seems to be weaker than his right, and he may have some lung issues...... The whole time we are thinking duh we have known that these might be the issue/issues for the past three months. He goes on to say that he isn't too optimistic that he will last on CPAP and if he doesn't we will give him some time to recover (carters recovery time the last three times after a CPAP trial has usually been around a week and a half) and take him to the OR and sedate him so we can get an exact picture of what is going on.....meanwhile we are thinking hello this is what we were supposed to do today.
During this time Carter continued to do really really well on CPAP. The respiratory therapist noticed that Carter needed a size bigger nasal canula so he switched him out. It wasn't the smoothest transition and from here things went south and long story short Carter is back on the ventilator. We were pretty upset that the RT messed with him when he was doing so well. We know that if he was that sensitive he obviously wasn't going to last anyways, but we are sure that he would have lasted longer. The most frustrating part in all this is when we talked to the doctor (happened to be some doctor we have never met before annoying) after and told here what we were told was going to happen today with the scope she said yeah I thought he was supposed to do that too..... Why the heck didn't she say anything!!!

So the plan now it to let Carter recover and then when he is stable again we will take him to the OR and do the scope the way it was supposed to be done today. I hate when doctors try to cover up mistakes by playing dumb. We had a lot of that going on today. Let's just say we can't wait for Dr. Santiago to get back. Please pray that this won't set Carter back too much and that he will continue to react positively to the steroids and we can get in to scope soon.

Can't not mention that Travis is awesome. When things like this happen I tend to just get upset and only vent to him not the doctors. He didn't hold back. He let the doctor know exactly what we thought. If I remember right he said something to the effect "I know we all make human mistakes was this one?" she did not know what to say which pretty much answered his question. Ahhhh!

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Listen

Boston and I had this conversation this morning...

Boston- "mom did Carter get that tube out of his mouth yet?"
Me- "no not yet"
Boston- "he needs to get that out"
Me- "I know that's what I keep telling him"
Boston- "is he not listening?"
Me- "no but he's trying"
Boston- "ok I will pray that he listens"

The doctor will be here either around noon or five. I will keep you posted. Keep praying.


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Just some thoughts

Choose faith over doubt, choose faith over fear, choose faith over the unknown and the unseen, and choose faith over pessimism. -Richard C. Edgley

I wish I could say that I was choosing faith, but fear and the unknown have definitely gotten the best of me as of late. I think I had a little break through over the weekend. I was at Walmart getting some groceries and I saw one of my nurses from when I was on bed rest. Actually the one that gave me bed baths (insert awkward here). She asked how I was doing and with a very hesitant face she asked if the baby made it. Later that night I was talking with one of our nurses and she was telling me how pretty much every baby after 26 weeks gestational makes it. Before that they end up loosing quite a few. I know that to be true I have seen three moms loose their babies during all this. I came home that night and finally let it go. I accepted that the fact that Carter is here and doing well is a miracle and blessing enough for me. I know that every single one of those Mom's that lost their babies would die to have their baby here. Trachea or no trachea. I realized that even if Carter does have to get a trachea it IS a miracle that they can do that and make it possible for my little boy to breathe on his own. We have been SO blessed during all this that I can't let fear and doubt and the unknown get in the way of the absolute blessing that Carter is to us.
Am I saying that I am ok with the fact that he might have to get a trachea? No, but I feel that if he does I will be able to get there. Thank you everyone for your continued support and prayers we feel them daily. Especially thank you for your faith I have been hanging on yours when mine has been weak.

Update-

Carter is doing well. The ENT moved his appointment to Monday because he will be out of town. Carter has been climbing a little in the wrong direction this last week with his vent and oxygen settings so we are totally fine to give him another four days to catch up. They have been working hard to beef him up and help him grow this past week. They are now giving him a high calorie formula for half his feeding and then adding calories to my breast milk the other half. It's working. He now weighs 6 pounds 9.6 ounces. They will give him a heavy dose of steroids on Saturday and Sunday to help with inflammation in is airway and to help with his lungs. They have also been doing breathing treatments and CPT (basically a vibrating massage on his back or chest) every six hours so help clear out the junk in his lungs. I don't know if I mentioned it or not, but the last time they ext abated him one of his lungs collapsed and a bunch of fluid built up in them. The treatments have been helping his lungs. He has had a lot of secretions which in this case is good because it means he is working it out.

Our Ward and Family are doing a fast on Carter's behalf this Sunday. If you can and are able to we invite you to join. We are hoping that best case he is able to get off the vent and if not that he is able to stay off long enough for the ENT to get a good look at what is going on inside.

Thank you, Thank you, and Thank you.

I choose faith because I know that faith brings miracles and boy are we hoping for a miracle.

This Boy...

Is absolutely amazing! I love him more than ever! He has been such an angel as of late. He has the sweetest spirit and reminds me daily of all we have to be thankful for. He loves his little Brother so much and talks about him all day every day. Some of my favorites

-"Mom did you make Carter all better yet?"

-While looking at trains "Mom Carter will like this one lets get it for him"

-When asking for his usual Juice and snack this morning he said "I can't wait to have juice and snacks with my Brother"

-"Mom I need my Brother to make me happy"

-"Carter will like this" said about everything he likes

- "P.U. stinky carter" said every time he goes #2

-My favorite "Mom I will ask Heavenly Father to make carter all better so he can come home"

I love him so much. He really has been such a good boy lately which has made things a lot easier with how stressed we have been.

What is it about seeing your kids sleep that makes you absolutely crazy about them? Boston has decided that somedays he doesn't need naps. Without fail 3:30 rolls around and he is sure to be passed out on the couch. I LOVE it!

Make it a Happy Day

Every time I have gone to see Trav's Grandma Barraclough she always told me to "Make it a happy day". I have never tried harder in my entire life to make each day a happy day as I am now.

Grandma Barraclough passed away on February 18, 2011 at 95 years old. I always joked that Grandma didn't like me for reasons like her sending all the kids in the family $20 for their birthday and I only got $10 or whenever I would call her our conversations would go something to this effect Me: Hi Grandma how are you? Grandma: Is Travis home? Me: No he is at school/work Grandma: O ok well why don't you call back when Travis gets home. Hang up. Grandma never said goodbye on the phone. Even though we joke about things like this I know without a doubt Grandma loved me and boy did she love Trav. I have never met a women that defines service more than Grandma did. She is absolutely an amazing person and has made me want to be a better person. I will miss her birthday, halloween, Christmas, and valentines cards. She never missed sending them to every single grandchild and great grandchild. We love you Gandma and miss you, but we know you were ready and had so many people waiting for you. I will never forget that you and my sweet Carter share a Birthday. What a special day December 11th will always be for me.