May 31, 2010
Viewing: Wednesday, June 2nd from 6:00-8:00 pm
3333 West 5600 South
Roy, UT 84067
Funeral: Thursday, June 3rd at 9:00 am. (almost exactly one year since we brought him home)
St Rose Of Lima
210 South Chapel St.
Layton, UT 84041
We will be burying him at Clinton City Cemetary right next to his Grandpa Mike. There will be a luncheon at the church after the graveside service.
Fly baby boy....fly high! Fly right into the arms of Jesus!!
Our very good friends, The Mitchells, brought us this gorgeous sketch to us tonight. Thank you, and we love you so much. It will be the new focal point of our home. Thank you Jill for taking the time to do this....you are amazingly talented!
Thank you for all of the support everyone has shown us over the last few days. Our little guy was so loved!
May 30, 2010
He grew his little wings very peacefully in his mommy and daddy's arms.
Carter, I love you more than anything in the world. You have been my life for 14 months, and every single second was well worth it. I would do it all over again in a heartbeat. I never knew what love was before you were born. I never appreciated the little things before you were born. I never had so much faith in the lord until you were born. Thank you for all of the wonderful gifts you blessed us with. I love you baby boy...save me a place next to you in heaven. Have fun partying with your Grandpa Mike!
May 29, 2010
We had the priest come to give Carter the Anointing of The Sick (also known as The Last Rites). The majority of our friends and family came up to say goodbye to the little guy, and we spent the entire day just celebrating Carter. It felt as though love was enveloping him, and I'm so glad that we got the chance to do that.
A photographer from Now I Lay Me Down To Sleep came and took some pictures. I can't wait to see them...especially some very sweet ones of Little C and his Daddy.
Carter looks as adorable as ever, and seems to be prepared for whatever is to come tomorrow.
We love you little Carter. Thank you for showing us what real love is. Of course we want you to stay with us in this life, but we understand if you feel that it's your time to move on. Thank you for choosing us to be your Mommy and Daddy, you have no idea how happy you have made us.
May 28, 2010
They do not believe that a surgery would help Carter's airway. His airway is so damaged, and the part that could possibly be compressed would not make a difference. The ENT said that this is the worst airway he has ever seen. With such a very low chance of this surgery working, we have chosen to not pursue it. Our baby boy is suffering, and it's time to put a stop to all of the torture he's been through.
We have chosen Sunday as the day that God will choose whether Carter will continue to bless us in this life, or grow his little wings and join his Grandpa Mike in heaven. The doctor will remove his breathing tube, and see what Carter does. If he is struggling, they will give him some medicine to make his passing painless. As bad as all of this sounds, we really are at peace with this. We feel like our little guy has been through enough, and we pray that if he does pass...it will be quickly.
Tomorrow is a day filled with blessings, visits from friends and family, and a photographer from Now I Lay Me Down To Sleep.
Thank you so much for all of your prayers and support. I know that some of our readers have been with us from the very beginning and have shared in this journey with us. This sweet boy has touched so many lives in his short 14 months. I am going to ask you one more time to pray for little Carter. I'm asking you to please pray for peace for him....whether that be from breathing without a machine, or growing his little wings. The little guy just needs peace.
May 27, 2010
May 26, 2010
When we arrived at the PICU, the Attending doctor came to have the Do Not Resuscitate talk with us. After talking to the ENT, she had changed her stance on Carter needing more time. His trachea has collapsed so much that there is no way that he wouldn't need a trach with a vent. The Attending had decided against the chest CT yesterday because she felt it was unecessary, but went ahead with it today.
In the afternoon we called Carter's Pulmonologist doctor and talked through it with her. Unfortunately, she felt the same way except she thought that with time he may be able to come off of the vent.
We continued to struggle through the decisions we had to make. Should we trach and vent him, or should we just let him go. I hate that we are in this position...I just don't feel like we should have to be the ones to decide the day that our baby grows his wings.
At six o'clock the ENT finally came to talk to us, but first he took a look at the CT results.
What he found gave us even more hope.
Carter's heart and blood vessels have shifted to the right which is causing his trachea to collapse.
The ENT told us that there is a possibility that a surgery may correct it, but he would have to pass the case to the Cardio-Thoracic surgeons. We will probably hear back from them tomorrow or Friday. He said that he didn't want to give us false hope, but that he knows that they do surgeries like this a lot. Whether they can fix Carter's shifting or not would be up to the heart docs.
The surgery would be extremely risky as it is basically an open-heart surgery, but it's better than the alternative in my mind. Especially since the shifting will most likely only continue to make his airway worse.
We have renewed hope, and I feel as though we have some direction as to which path god wants us to follow.
Thank you again for all of your prayers and support. Honestly, they are what have been helping to keep us going the last few days. Please continue to pray for Carter and that the doctors find the wisdom to be able to do a surgery to save our baby.
May 25, 2010
When we woke up this morning, we saw that the sun was shining which gave us the feeling that with a new day came a new hope. In comparison to the dreary snow that we saw yesterday, this was a welcome change.
We got to talk to the Attending doctor over Carter's case. She gave us a small glimmer of hope. It's a longshot, but it's enough to keep us going. Everything that she was saying fit Carter, and completely made sense. She believes that he just needs more time to heal before coming off the vent. In comparison to the talks we had with the doctors the night before, this one was very positive. Yes, we still need a miracle, but we've seen them happen before...after all, Carter is a miracle in himself!
We did not get a chance to talk to any of the ENT's today, but that's OK. We don't think that it would have changed anything they were doing with Carter anyway.
The plan for right now is to give him time...and keep him as sedated as possible. That little sucker has a lot of fight left in him, and does not like it when people mess with him.
We appreciate all of your prayers and support. I am overwhelmed by the huge response we have gotten on our blog and Team Carter page. We do feel the love that you are sending to us and to Carter. Thank you!
May 24, 2010
My heart is broken, and I don't even know where to start.
We got the worst news possible today after Carter's scope of his airway.
They found that he has severe Tracheomalacia. Basically the cartilidge that holds his airway open has collapsed by 90%. It's along his entire airway, and is so bad that they aren't even sure that a tracheostomy would help him. The doctor thinks that it's been progressing for awhile, and this last intubation just sent the little guy over the edge.
We are stunned.
The doctors can't believe that he's been breathing on his own so well for this long, and it sounds as though they aren't sure that he'll ever be able to breathe on his own without a ventilator.
They are doing a chest CT on him tomorrow to be sure that no major blood vessels are causing the malacia, but the chances of that being the problem are pretty slim and even if that is the problem, it would mean a pretty major surgery that we aren't sure would work. We just don't know how much more we can put Carter through.
We have some major decisions to make over the next few days...decisions that I thought were at least years down the road. We know that God has a plan...he always has for Carter even if we wish it were different.
May 23, 2010
May 22, 2010
They kept him very sedated and pain free. I'm pretty sure that when he opened his eyes and looked at me, he was actually seeing the elephants on parade. The good news is he got a good rest which was much deserved. As one of our friends said..."even the strongest need a day off".
I forgot to mention that we got the results of his Echocardiogram back, and everything looks pretty good. The doctor called me yesterday and told us that we don't need to go back until the end of Summer. We also got the results of his hearing test on the day of surgery, and I forgot to tell you that his hearing has actually gotten worse. He had been hearing at about 60-65 db, and now he's hearing at 80-85 db. The good news is that this does not affect his hearing aid since the bone conduction bypasses his eardrum. The Audiologist thinks that there is still fluid in his ear which is affecting how well his eardrum moves. At our last ENT appointment, the doctor was aware of the fluid, but chose not to do anything about it for now. With this new piece of information his opinion may change.
The on-call ENT came to have a chat with us about Carter's airway. They do want to do a Bronchoscopy on Monday before they try to extubate again. The little guy had one done when he was in the NICU, but it seems as though his airway has changed since then so we think it's a good idea. A Bronchoscopy is a procedure where they stick a small camera down his airway to see what is going on in there. The plan is to take Carter into the OR on Monday and possibly place an ear tube, then do the Bronchoscopy, then extubate him to high flow Oxygen if everything on the Bronch looks good. I'm really glad that we are doing this because I feel like maybe we can find some answers to his breathing issues, but I'm also scared to death of what they might find. One of the positive things about this is that they were able to schedule it with Carter's ENT, and not somebody else. I'm so happy that we can have some continuity of care.
Until Monday, Carter will be enjoying his visit from the Candy Man. The house is way too quiet without the dribble of water from the Oxygen tank, and the beeping of his monitor.
May 21, 2010
May 20, 2010
Again, thank you for all of the prayers...it warms my heart to know there are so many people who care about our little guy. As you can see, we're not out of the woods yet, but I think we may be on our way.
May 19, 2010
Eyelid = Check. Carter's going to look like Rocky. The doctor said that his eye will be so swollen that he won't be able to open it for a few days, and he has stitches on the top and bottom lids.
Urology = Check. Still waiting to talk to the doctor about it, but it seems to have gone well.
ABR (hearing test) = Check. His hearing has gotten worse. They think it's due to fluid behind his eardrum. We have an appt with ENT next month, so we'll talk about it more then. Luckily, this doesn't affect his hearing aid, so he can still hear with it on.
Plastic Surgery = In Progress. They have taken the mold for the new prosthetic hard palate, but the plastic surgeon has not started on the soft palate yet. Hopefully not too much longer.
The nurse says that Carter's doing great. Keep on Keepin' On little buddy!!
They took Carter back at about 7:40, and the nurse said that his intubation (inserting the breathing tube) went well.
They finished the Echocardiogram, and his eyelid. Urology is in there working on him right now.
So that's one surgeon down. One working on him now...and one to go.
I'll update again when I can.
May 18, 2010
May 13, 2010
Here's Michael stretching with our niece Emily (the author)
Mikey showing off his one missing tooth. He's lost the other one on top since then.
My other niece, Samantha (in her awesome Team Carter shirt), brother-in-law Justin, and sister-in-law Stacy.
At the finish line!
May 12, 2010
May 8, 2010
Because, I feel sad for the rest of the world. The people who will never have the opportunity to have somebody like Carter be a part of their family. In my opinion, his chromosomes being shuffled around differently only makes him perfect.
He is perfect.
That perfection emits a perfect love.
The love is so much greater than I can describe with words, and it reaches out beyond just our immediate family. It has touched grandparents, great-grandparents, aunts, uncles, cousins, distant cousins, and beyond. If only I would have known during those first few weeks when we were mourning who we thought Carter was going to be. I had no idea that his differences were something to be celebrated.
We are the lucky ones.
We are so blessed.
Not only do we have Carter, but we have an amazing family who accepts him and loves him just the way he is. We couldn't ask for more. Carter is so lucky to have such a wonderful group of people to rally around him.
We went to my niece's birthday party tonight. Emily just turned 10 years old, and is simply sweet. . During the party, she showed us a book that she had written as a project for school. I want to share the book with you, because it brought tears to our eyes. The pictures truly don't do this justice. It is simply beautiful.,....and perfect.
Now, isn't it just so sweet?! To think that she could write about anything in the world, and she chose Carter. Thank you Emily! You made my day, and I KNOW that it warms Carter's heart to see you too!
Emily's older sister, Samantha, showed her love for Carter in a different way. On Friday, she participated in a 5K race with some of our family (more pics of this to come later). She wanted to show her support for Carter by making her very own Team Carter shirt.
May 5, 2010
I just barely signed the paperwork to confirm the goals. One of them was...."will sit unassisted".
Do you think that we may need to re-think our goals for this year?
It was for about 15 seconds, but there was not one wobble until the very end. Go baby go!
As you can see from my sidebar, we started a fund for Jenn and Yan. They did not have insurance, so everything is a complete loss. If you would like to help them out, you can ChipIn. Thanks for your prayers...they are very much appreciated! Amazingly enough, they got so much help from friends and the community, that they were able to clean the house out completely in six hours! Jenn and Yan are now in a basement apartment and are starting to rebuild their lives.
May 4, 2010
Here is a picture of her house a few hours later. The water rose as high as her door handles, and actually picked up her furniture and moved it around her house. Her fridge was completely tipped over, and as you can imagine...she lost almost everything. She is very grateful that she and her precious angel are safe, but could really use some prayers right now. Poor little Yan does not understand why they can't just go home. So, if you could just send a good thought, or a little prayer her way, I know that she'd appreciate it.