Home

No Carter is not coming home. Yet. Home is a word that we haven't talked about pretty much ever with the Doctors. Today we did and it was awesome. Carter is a rockstar! Seriously the kid is blowing away everyone. Before surgery all the doctors kept telling us "now remember it is going to get a lot worse before it gets better". In almost all Trach cases that is true. Thankfully in Carters it hasn't been. We thought that he would be still on pain meds sedated 6 days post-op. Not Carter he decided today that he was ready to kick the vent and switch over to CPAP mode. Meaning the machine is just boosting his own breaths. He is doing all the breathing on his own. This morning when I talked to the Doctor it was his goal to get Carter to CPAP mode by Friday. I guess all it took was for Carter to hear that because he had awesome blood gasses after and switched over within a couple of hours. Pretty much we are ecstatic. Our hopes of coming home off the vent are becoming more of a reality. In fact one of the RT's today said she would bet a million bucks that he comes home off the vent. Keep your fingers crossed. If he came home off the vent that would mean a lot less in home nursing care and we could have more of a "normal" life. So the plan now is that all the Doc's, developmental, and whoever else are going to meet Thursday and figure out a concrete plan for Carter and discuss his DISCHARGE date!!! We won't come straight home. We will make a stop at Our Children's House in downtown Dallas for a couple weeks. Dr. Perez said we could be making our way over there as early as next week. There we will learn more trach care, wean him off his pressure support and hopefully change him over to trach collar (meaning humidify and oxygen). From there we will come home.

Speaking about trach care. Today was the first time they have changed out his trach since surgery. Not going to lie it was freaky! Good thing I have a strong stomach because seeing the hole in his neck wasn't too pretty. Somehow I mustered up the strength to do the care and clean up all the wounds. This is something that we will do daily forever so I figured might as well just get it all figured out now. I also learned how to suction him, easy. When we changed out his trach we put in a new kind that is so much more comfortable for him. He was such a happy boy after. Calmer than I have ever seen him. The stitches in his neck that were holding the trach in place were really irritating his skin so we were happy to get them out. He most definitely has sensitive skin like his Daddy and Brother.

This is what a trach looks like. Carter's is more rubbery, making it more comfortable for him. Pretty much the same thing. The long little tube thing is what goes into his airway and what he breaths out of. I try not too think too much about it because it kinda freaks me out. I know with time it will all become more normal.

Anyways the kid is cute. Freaking cute. We are so proud of him. The thought of him being home is unreal. I can't even put it into words. We are beyond happy! We have lots to do to get things ready for him to come home. We also need to get our CPR certification done. We have put it off for so long because we thought home was still a long ways a way. Time to get busy or I guess I should say busier our lives are pretty crazy.

Why we live in Texas

Because all last week it was in the 80's and we hit up the sand park or spray park almost everyday. Seriously I LOVE living here in Texas and this is just one of the reasons.

Soccer

We signed Boston up for Soccer this year. We decided with everything going on he needed something for just him. Last night was his first practice. It was hilarious to say the least. Boston definitely needs to practice his listening skills. He was zoning out quite a bit. When he actually listened he did pretty good. For some reason there was a lot of fake falling going on. It was hilarious to watch 3 year olds try to play. There was a lot of hands on the ball, asking their Dad's if they wanted to be on their team, and drink breaks. So cute and so glad we did it.

Boston was going on about four days of no naps. This was him after about 5 minutes in the car. He was exhausted to say the least. Maybe this had something to do with the zoning out. I'm not convinced, but who knows. One thing for sure is that if we let him he would wear his soccer cleats, shin guards, and shorts every day. He LOVES them!

After Surgery

Carter is doing great after surgery. Other than swelling up like a balloon and some bruising we have no complaints. They originally told us they would keep his completely paralyzed for at least 48 hours and on pain meds for at least a week. Well within 24 hours they stopped the paralytic and within 48 hours they stopped the pain meds. I was fine with the paralytic being stopped, but I questioned the doctor about the pain meds. He said Carter would let us know if he needed them. There were a couple times he moved today where it looked like it was painful, but other than that he looked very comfortable. One thing that has completely surprised us is that he has had great blood gasses and they have already started to wean his ventilator settings. Also he is only on 26% oxygen (the air we breath is 21%) this was a shocker to me as well. He has been more alert today and even smiled a couple times. Cutest thing ever!!! He is retaining a lot of the fluids so we need him to pee some more. He gained almost 10 oz. over the last 24 hours so pray for pee ;) His bowls aren't moving around that much which is normal after a stomach surgery. Once he poops he can start eating again.

We are so proud of Carter. It is so nice to see his face and he really looks so much more comfortable and happy without the tube in his throat. Thank you for your prayers.

Carter's Surgery

(Carter all prepped and ready for surgery. He was sure to completely empty his stomach with 3 dirty diapers before)

Today was Carter's Big day. He had a total 5 surgeries done. All day I kept saying "poor baby". I just feel so bad for him and his tiny body. He had a tracheostomy (in the throat), G-tube (his new feeding tube, left side of belly), Nissen (band around his belly, the way too long scar down his belly), Broviac line (two white tubes in his leg), and a circumcision. I can't even begin to describe how nervous Trav and I were all morning leading up to it. It hurt to breath and felt so labored. The two hour wait felt like a lifetime. The thought of my baby being cut open in five different spots almost put me on my death bed.

After it was all over we walked into his room and saw his face with nothing on it for the first time in his entire life. I can't explain the feeling other than bliss. I don't think we even recognized all the other stuff. We had huge grins on our face and kept saying over and over again how cute he was. He is nice and puffy and will be for a couple days. The ENT who did the tracheostomy said everything went great. Before surgery Trav and I kept saying how in the world are they going to fit a trach under his chubby cheeks. Apparently it was a little difficult. Our nurse said the Doctor had to tape up his double chin to make way. We had a good laugh at that. The pediatric surgeon that did everything else said it was a "boring" surgery. The past couple weeks have been anything but "boring" so that was definitely music to our ears.

They will keep Carter completely paralyzed for the next 48 hours and then slowly wean him off pain meds and everything else. The puffyness will go away once he starts to eat again and move around a little bit. So probably in a week or so. They are keeping drops in his eyes to keep them moist since he isn't blinking. I didn't even think about that. Good thing Carter has such amazing Nurses and Doctors. Our favorite nurse Susan was his nurse today. Trav always says that he has to drag me away from that place and it's true, but when Susan is there it most definitely is a lot easier. The ventilator is pretty much doing all the breathing for him since he is completely sedated. Hopefully in about a week we will be able to start weaning him off that too.

Boston spent the day with his cousins. He had a blast and didn't mind that we were gone one tiny bit. Brandon and Emily came up from Waco to help us out. Can't tell you how blessed we are. Our family is Amazing and they certainly are no exception.


Thank you everyone for your prayers we are so blessed. Carter continues to be a fighter and amazes us with what his little body can do.

100 Days

Today marks 100 days. I can't believe it has been that long. Some days especially the last two weeks feel like they will never end, but for the most part it has gone by pretty quick.

100 days of...
- the NICU being Carters home

- of driving 2+ hours a day in the car. Could be less, but when you are spending $400+ a month on gas the last thing we want to do is pay $6 a day in tolls.
- of trying to be a good mom in two different places.
- of being a single wife. That's what trav and I joke about because we never see each other.
- of our amazing ward bringing us meals twice a week.
- of being tired.
- of pumping 5-8 times a day.
- of Boston asking/begging me to not leave.

- of watching Carter grow almost 4x his birth weight.


- of sending trav his daily picture and text update on both boys.
- of wondering/worrying what the next day will bring.
- of being served more than I can even fathom.
- of leaving. Always leaving one of my boys to see another one. Can't wait until they are all three in the same place.
- of knowing/learning our Heavenly Fathers plan for us and for Carter.
- of trains. I don't know how it happens,but the kid decides he likes cars and all the sudden he has buckets full. Then he decides he likes trains and now trains and tracks are all over our house. Please tell me we are not the only ones that do this.

- of learning so much about myself.
- of thanking my Heavenly Father every day for the blessing of eternal families.


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The decision

Carter will be getting a tracheostomy on Tuesday the 22nd around noon. It was one of the hardest/easiest decisions for us to make. Easy because it was very clear it needed to be done. Hard because it breaks my heart that he has to go through it and it is no small commitment on mine and Travis' part.
Carter will also have two other surgeries done at the same time. Both are pretty much required for him to have a trach. He will get a G-tube put in his stomach for his feeding and medications. The incision sight will be about the size of a straw. He will also get a Nissen which is basically a band that will go around his stomach that will keep him from spitting up and throwing up. This is necessary because if either were to get stuck in his trach he would have no way to breath. This Nissen incision will be in the middle of his tummy 3/4 the way from his chest to his belly button. I am not a fan of this one, but understand it is necessary especially with his crazy reflux. They might circumcise him at that point too. Might as well get it all over with at one time. The ENT will do the tracheotomy and a pediatric surgeon will do the other two. It should take them a total of 2-3 hours.
Some things we brought to the table when trying to decide what we should do were...
-carter improved on CPAP last time. He lasted 7 hours which was great for him, but not that great. He was also pumped full of steroids so we know those seven hours were a result of them and he couldn't have done it with out them.
- we have no idea how long Carter will have the trach, what kind of in home nursing care will be required, what he can and can't do, how this will effect him long term, and the commitment trav and I will make. We still don't know any of these answers. Only time will be able to answer them.
- developmentally he NEEDS to get out of there. He lays flat on his back all day long. He doesn't have much social interaction with people accept when we are there.
- we knew that if we were to keep giving him a shot at CPAP we would still end up getting a trach and as our doctor put it we would be wasting time.
- he needs to be home with his family and we need him home. It makes me so sad when I walk in his room and he is wide awake staring at the wall. Getting a trach in the words of our doctor will "expedite" him home. Babies thrive at home and do so much better.
- he has completely out grown the vent. They have switched it over to cpap mode which mean he is doing all the breathing on his own. The vent tube is just keeping his airway open and providing him the oxygen he needs. This is another clear indicator that it is completely an airway issue.

Obviously prayer was a huge part in our decision and gosh I can't even begin to think how I could make it through this without it. I think I have asked every nurse, doctor, respiratory therapist, you name it and they are all completely confidant we are doing the best thing for Carter. Sure I hate the fact that we won't be able hear his voice and go home without help, but I know that Carter will be so much happier and I can't wait to see his face with nothing on it.


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