More Visitors!

Last weekend Jen came to visit! It was so nice to hang out with a best friend and get to know her little boy (who we will refer to as kiddo for safety's sake) since we haven't lived in the same state since before he was born. It was such a fun weekend! Jen is so chill and her kiddo is such a trooper to play in the hospital lobby all day, most days.
Oh, we were able to drive around Pittsburgh and show them some of it and where Adam goes to school.

And, since this doorag is still too big on Brigham, we decided to try it on little kiddo. Turns out his head size was perfect for it. Look at his best biker face?

 Oh, and we did take Jen's little kiddo on a walk to a nearby cemetery. It is beautiful - Pittsburgh's largest and oldest cemetery. They have huge tombs, graves and monuments with stain glass and statues as high as office buildings. It was quite an experience.

On their last full day here we were able to take Brigham outside where he and kiddo could meet :) (as long as they didn't touch. there are certain precautions since Brigham is still getting antibiotics) Look at those faces!

When Adam and I first brought Brigham down to meet kiddo we found him like this: doesn't this remind you of peter pan in Hook?

disclaimer: Jen was standing by even though it doesn't appear so. she was letting him get a nap.

Adam's parents gave little Brigham his own little jersey. Adam is pretty stoked they'll get to wear matching BYU paraphernalia for the upcoming season. I have to admit, father and son look pretty awesome and stoked for this year.

Brigham has been strong enough to do tummy time. In fact, he's super strong and growing everyday.

Also, we've been able to take him on stroller rides back behind the facility on this walkway. It's so nice to get him outside since all three of us get a little cabin fever in his room, so we just walk up and down that little walkway. It's so fun for Brigham!

Visitors!

The few weeks we've had a slew of visitors. It has been so much fun and broke up the hospital monotony.

Two weekends ago Adam's parents came to meet their grandson! They are leaving on a mission in a few days to Manaus, Brazil. So, it was especially nice to have them here so we could spend some time with them before they leave.

While they were here, it was Dad's birthday and it was very fun to celebrate with him. Adam's sister and her family also were here with us for the weekend, but for some reason none of those pictures came through. I'll have to get some from her and add them later. oops.

We are very excited for them and they are going to be exceptional missionaries!

For the last week and a half Adam has been sick - not horribly sick - but sick enough to keep him in bed and away from Brigham. Obviously, Brigham is in a fragile state and can't be risked coming into contact with any sickness. So, Dad and son haven't seen each other in a long time. That is why today is so very thrilling. Now we don't need to video chat Adam from the hospital for him to see Brigs:

Today, Adam was well enough to go see Brigs! What a day to celebrate because...

In the last week a lot has happened....including a very successful check-up trip to the cardio team.

Where he got to ride in a stroller for the first time. Luckily he loved it!

He also got his dressings off his chest so he can wear clothes and onsies now. Cute!

Also, everything else is just getting better. There have been so many improvements in the last week. Too many for me to mention here. We are just going to celebrate the normal baby experience that Brigham is just beginning to experience (ex. car rides, stroller rides, clothes)

Most recent email:


Hi all!

We probably only have one or two more of these email updates until there is nothing pressing left to report! As expected, at the end of last week we moved into the smaller long-term children's hospital! It's a lot better than we were expecting. He gets his own room, which is rare there, and the babies don't have as widespread intensive care so the nurses have more time to spend with each patient they have. Also, the 25th was Brigham's one-month birthday! We celebrated! (see picture) He gave us a great gift, too! We found out that the pre-infection prognosis was now out of date and he doesn't need a feeding tube in his nose anymore AND we probably won't need to put medicine through his nose tube at home! Yay! Candace was SUPER happy since we had to practice putting the tube down his throat and checking placement and all that jazz. No bueno. But, also! He has gotten all his bandages taken off! He's practically good to go! I told Candace we should steal him and bring him home now! He does still have an IV in his arm, but that's just to get the one medicine keeping him in the hospital for four more weeks and he can't take that one orally. Other than a couple medicines there is nothing keeping him from coming home! So things are getting better and better! 

He does have problems with reflux still, but the doctor has reassured us that it just takes time to get over that. I have been under the weather, but Candace got to take him back to Children's Hospital this morning for a check-up and so he got his first stroller ride (see insanely cute picture attached) and his third ambulance ride. I guess our old doctors said that everyone still talks about how cute he was and how nice we were, which is so nice of them to say. He has already grown an inch since birth and is back to steadily gaining just beyond his birth weight.

Thanks again for all of your support! It has been a very long ride, and we still have a good four weeks to go, but everyone's love and care helps us get through patience-inducing patches. Oh, also, we found out that the last day he receives his IV medicine and probably our discharge date is August 21st or so.

Brig's Update - Day 24

Adam sent this email out a few days ago:


Hello family and friends!

It's us again. Another update is due since things change so quickly day to day in the life of Brother Brigham. We are now in the recovery period! It's official. He vanquished the infection with all he had in him and now we are on the long walk home. He had some hard days during the worst of the infection but a priesthood blessing and awesome doctors provided him the means to get through it all. Once he was stable enough to breathe on his own they then decided the infection was spreading into uncomfortable territories, like threatening his original surgery and his bones. So they decided to reopen him at the surface level and wash out as much they could of the infection. They then put a "wound van" on him, which slowly drains out any lingering infection. BUT, as of Monday they said it looked so good they could take that off any day. 

Also, just to relate, we found out the infection is a very specific and rare strand of MRSA, so the infectious disease doctor was very excited to study it. But, it also means it is a very serious disease that we are getting over. The plan is still a six week process of antibiotics and his cultures came back negative about a week ago. So we are almost done with week one. This afternoon we have a tour planned of the new medical facilities we will be going to down the street, called "The Children's Home". Once that is done the doctors will collaborate on when he should move over there. This is very good news. It's the last stretch until he is completely recovered and we take him home. Technically he still has the infection in him, negative germ cultures just show it's not growing anymore, but the medicine is ensuring it will not linger in him at all. So he will have his own room over there. Candace and I may or may not actually spend nights sleeping there. We don't know the living arrangements and if we can't even sleep in the same room as him we do not think there is a point of sleeping there when our home is a 15 minute drive away. 

Oh! Other good news is that he is now eating out of a bottle. He is relearning how to eat, so right now we are on a thicker formula-rice mix, but we will slowly train him to swallow instead of breathe in his food. I sometimes have the exact same problem. I think that's about it. Grandma and Uncle Stanton got to spend half a day with him on their way around the world, which was awesome. We've also had an incredibly sweet ward that has been waiting just outside the hospital to help whenever we need anything. Visiting is welcome, again, too. We will probably be moving over to the Children's Home tomorrow or Friday.

Thanks again for all of your support. We have seen some very sweet and direct miracles, which we are so humbled over, largely because of your faith and prayers. 

Love,

Candace, Brigham, and Adam

TEAM BRIGHAM

Brigham's Update

Adam sent this email out to a number of people, but I thought it was a pretty good update of where we are now. We are just so proud of our little guy! It has been quite a roller coaster, but we are just amazed with how strong he continues to be. We have so much hope and faith in him and the doctors and that he will heal in a couple months time. 

Hi all from the Italian district of Pittsburgh!

Candace and I felt we should write up a synopsis of how The Brigster is doing and that way we can reconnect with a lot of people that we have been indirectly communicating with. First, we just want to thank EVERYONE for all of their support. We have been holed up in the hospital for over two weeks now and every time we have surfaced to the public we have only felt love and support, which really helps us through the toughest times. 

Brigham's heart surgery, and biggest challenge to date, went perfectly, as we know you are aware. That is no longer a concern for Brigham; he will just need a few visits through his first year of life and then an annual doctor exam each year of his life. We have heard both he will and will not be able to play contact sports, depending on the doctor. But, those decisions will come with follow-up exams. 

We are currently back in the CICU (Cardiac Intensive Care Unit) due to a complication from the surgery and recovery. After being up in recovery for a couple days the Brig-man-on-campus came down with a heavy infection from the surgery and drainage/medicine tubes that had been inserted and removed from his chest and abdomen. The infection went septic, but not severely to the point of organ failure or anything like that. But, the infection was bad enough that his body was spending all his energy in fighting it with the antibiotics they started. So he needed to be put on a tube to help his breathing. He was also put onto a pacemaker (not as serious as it sounds, they already had the lines in from the surgery and the thing sits in his bed running off batteries), but he was just taken off it this morning. The pacemaker was because of a condition many newborns have where they have an extra circuit in their heart that starts looping, causing their hearts to race at really high rates. They have been giving him medicine to regulate his heart rate and we will most likely need to give him medicine 4x a day for his first year. They expect him to naturally grow out of that problem within the first year like most children. 

So the current hurdle Brigger-the-Better is facing is the infection. They are currently taking an x-ray to see if his lungs are working strong enough to allow him to get off his breathing tube by the end of the day. They are optimistic he will most likely come off the tube today. After that we are waiting for his infection cultures to show up negative so we know the infection is not growing but dying off. We expect that result any time, as well. He does have little complications they are watching, but we will just wait as we monitor it all. And he just got his breathing tube out with the x-ray! Yay! Now he's rediscovering his tongue! So, one thing we have learned recently is that the antibiotics for the infection is a six week process. And because of the IV he needs for the medications he cannot come home for that time. Instead, he will go back up to recovery hopefully by the end of the week, and then once he gets feeding and breathing down pat and he is ready to be discharged like normal, he will move down the block to a children's home. It's basically a hotel for families with kids who need medical care to a degree less than a hospital and more than parents can be trained to do. We are just learning about it, but I guess we can stay with him whenever we want or have nurses take care of him as needed. So that is where we are at now. He is INCREDIBLY cute. Probably the cutest baby I have ever seen. We have started charging nurses admission fees to come in and see him. 

Thank you again for everything! Obviously it has been very hard and scary at times, often for long periods of time. But, we keep reminding ourselves that he has gotten through the worst already and he won't remember any of it. That knowledge with our hope and faith has kept us going well. The support has been overwhelming and perplexing to us at times, but we are always grateful for it. On Sunday the Elder's Quorum President came down and helped me give Brigs another blessing and our wonderful Bishop came later and allowed us to take the Sacrament, too. We also heard that Brigham was prayed for in nearly every prayer at church, which is really humbling to us. Oh! I forgot to mention the infection is Staff and they have to take precautions to make sure it doesn't spread to other patients nor worsen his conditions. So if you are planning surprise trips out here just know you may not even get to see him. But we are going to try and sell photos in the gift shop downstairs for only $5, which is a great alternative.

Much love,

Candace & Brigham & Adam Dyal

PS Dr. Morell just visited us and winked at Candace multiple times so it's been a very good day!