My broken heart

It is just days away from the anniversary of my son being gone from this world for five months. The more time that passes, the more difficult it seems. I don't know if it is just the numbness wearing off or the reality that this is not just a terrible dream. I am actually starting to have physical pain because I miss him so much. I ache to hear his frantic cry just because I left his sight to go to the bathroom. I want him to wake me up at 3 am because he is feeling good and wants to play. I wish that my all to familiar drive to Primary Childrens was for a cardiology checkup, not because working there is one of the few ways I am able to feel close to him. I am doing what I can to keep busy, but when it come down to it, I know that I wouldn't be doing any of these things if I still had him here with me. I hate all of the empty cupboard and fridge space that I have because it is no longer needed for medications and formula. On January 8 it will be 5 months that he has been gone. On January 11 it will be two years since we first found out that we would be blessed with a child of our own. And yet it feels like ages have passed. My arms ache to hold my baby, I want to kiss his sweet face and hear his voice calling for me. I know that I was blessed with 8 months more than anyone thought we would ever have, but in my selfish way, it wasn't enough. I don't know how to continue on without him. I am doing my best to honor his memory, but that doesn't ease the pain, it only seems to distract from it for a while. Bridger, I love you so much. The day can't come soon enough for us to be together again.

LET'S MAKE SOME NOISE!!!!!

While blog-stalking tonight, I came across a post explaining a new bill to be presented to our legislation. The bill is known as the Congenital Heart Futures Act. The bill addresses the issue of adults with CHD's and the shocking statistics that only 10% receive the life-long care that they need to have a longer, healthier quality of life. The bill supports research and education on congential heart diseases to promote the chances of the medical industry discovering new and better ways to help those born with CHD's later on their lives.

The bill hasn't received enough attention to be recognized as well as we need it to. But we can help our Senators understand the importance of this bill and perhaps help improve the lives of all those little boys and girls born with CHD's that spent months in hospitals undergoing surgeries to help them continue forward. We need them to know that even when they are grown they will still be cared for and taken care of.

If you want to voice your opinion there is an email template (found on this page under "action is simple") that you can fill in the blanks with your name, your personal relationship to this issue and where you are from. Then you send it to your local senators and house representatives and they will start to see how life-changing this bill is.

Email Bob Bennett: here

Email Orrin Hatch: here

The full text of the bill can be read here.

It is time to make a STINK about this terrible disease!

Date Change

We wanted to let everyone know to mark your calendars with a different date. Some things happened so we had to change the date of the fundraiser. So now mark your calendars for Saturday February 20th 1-4pm. We are getting very excited we already have some great things for the silent auction and are hoping for more wonderful things. We also want to thank everyone who has pitched in to help it means so much to us. Also we have put the new flier below if you want to print it off and take it to work with you or send it to school with your children that would be wonderful, we want as many people as possible to show up, the more the merrier.

Also as a reminder the Festival of Trees is this week through Saturday and Bridger has a tree and a wreath so go check them out as soon as we get pictures I will post them so you those of you who couldn't make it can see. We want to thank Uncle Lee and the family for putting together the tree and Staci and Allison did the wreath.

Thanksgiving eve

It's the night before Thanksgiving. I am reminding myself of everything I am thankful for. It seems as time goes on, each day is a little more challenging. Above is a picture of Bridger and I on top of PCMC at sunset, just before we left for Texas and a picture of Danny and Bridger one of the last times they saw each other. I know this seems depressing, but these are the moments I am so thankful for. In the many months at the hospital, there were many families I met that didn't even have half of the memories we were able to share with our sweet boy. Knowing this doesn't make the pain any less intense, but it does remind me that somewhere there is always someone who is suffering more than me. My baby knew whether or not I was even in the room with him, he knew when it was 5:00pm and Daddy should be around to play. When we called Daddy on the phone, Bridger would turn the receiver around to see if Daddy was behind it. And when we were flying to Texas, our nurse had a laptop and Bridger kept grabbing for it because before we left we had set-up Skype to talk to Daddy on the webcam and he knew that when the computer was on we were going to see Daddy. I loved that Bridger didn't even like when I had to go to the bathroom because I was out of his sight. And when he played with Daddy, I couldn't interfere in there business, but I also was not allowed to be out of his line of sight. I loved when he woke up at 4:00 am with a huge smile wondering why Daddy and I weren't quite ready to play. I love that for a couple of months Danny and Bridger got to watch College Game Day together on Saturday mornings. I love that Bridger loved to go on walks anywhere, in the hospital or at home. I love that all he needed for entertainment was a cold, wet washcloth and hospital garbage and maybe his parents or grandparents running around his hospital crib making fools out of themselves. I love that even right before he died, he was talking to me while I brushed my teeth. Although my heart is broken beyond repair, I am grateful that my beautiful boy no longer needs oxygen and tube feeds and continuous IV medication to allow him to be a baby. Now, he can cause all of the mischeif he wants without it taking such a toll on his body. I know I have said this over and over, but I will continue to say it as long as I am alive- not only tommorrow, but everyday PLEASE count your blessings and know what some of us would give for a rebellious teenager, a baby crying in the night, a whiny toddler at family gatherings or even just a child to kiss good night. More than most, we know that life is hard, but if it wasn't how would we know when we got to heaven? For all of you reading this, I am thankful for you. Each and every one of you has touched my heart in ways that you will never know. In losing my son, I have gained a heightened awareness of the blessings I am surrounded by. Thank you.

Next Step

Things are really moving forward. We have our date and location. So mark your calendars for Saturday February 6th 2010 at the Utah Olympic Oval. Tell everyone you know, we want as many people as possible there.

Also if there is anything you would like to donate please e-mail us at staci@intermountainhealinghearts.org. We need tickets for the Prize Drawing, table cloths (preferably red), dark red ribbon, if you know someone who could donate an iPod for the Prize Drawing, and we need items for the auction too. Remember it is all tax deductible. Also we will need people to bake food for the day of, so if you want to bake something please let me know.

We're getting started!

Okay, it has been a long time for me, but thanks for sticking with us here. So we are having some new bracelets made that will say "heart hero" on the front and the new IHH website "IHHearts.org" on the back. I will be doing my first fundraiser at the last U of U home game on November 21. Anyone who would be interested in helping raise money at our tailgating lot that day let me know. I am hoping to show the board at IHH just a small example of what we are wanting to do for CHD. I am also starting to collect donations to use in the silent auction in our February fundraiser- tentatively February 6. So if any of you know anyone who might be able to donate giftcards, ski tickets, gift baskets, electronic devices, or anything that we could use in our silent auction or for raffle gifts, please contact me. My email address is brasko_loki_smith@hotmail.com. Just title it fundraiser so that I don't delete you as junk mail. I am really looking forward to raising awareness of the number one killer of our babies, wish me luck! Staci

IHH Here We Come

Okay so we have been okay-ed to do some fund raising for IHH, we are starting to streamline our thoughts for a big fundraiser in February for CHD Awareness week. As soon as we nail down a date and get a better handle on what we need help with I will let you all know. We are super excited to get the ball rolling so stay tuned to see what we come up with and if you have any ideas please feel free to share.

Change of Plans

So after talking it over Staci and I have decided to try and become a part of Intermountain Healing Hearts. Staci will be presenting a proposal to them Oct 13th, if all goes well we will then jump in feet first and get a fundraiser planned for February. We will keep you posted on the outcome as well as any help we may need.

Children's Heart Foundation

So this is Jessica, Staci's sister, and I am now going to be posting to the blog to keep everyone updated on certain things. Staci and I have decided to jointly start a Utah chapter of the Children's Heart Foundation. This is an organization that raises money to fund CHD research and only CHD research. If you want to look into the more their website is: www.childrensheartfoundation.org It is a wonderful organization that we are excited to become part of. We will be holding the first major fundraiser in February during CHD Awareness Week. We are still brainstorming ideas so if you have any good ones please let us know also if you would like to be involved in helping set up the chapter please let us know, the more help the better. Thanks :)

THE BEST

God saw you getting tired,

and a cure was not to be.

So He put His arms around you,

and He whispered "come to me".

With tearful eyes we watched you,

we watched you fade away.

Although we loved you dearly,

we could not make you stay.

A golden heart stopped beating,

hard-working hands at rest.

God broke our hearts to prove to us,

He chose to take the best.

It's lonesome here without you,

we miss you more each day.

Life doesn't seem the same

since you have gone away.

When days are sad and lonely,

and everything goes wrong,

we seem to hear you whisper,

"cheer up and carry on"

Each time we see your picture,

you seem to smile and say

"don't cry, I'm in God's hands,

we'll meet again someday"

My sister found this poem and sent it to me. Today was the heart walk and it was beautiful. I am not quite up to it today, but soon I will post pictures from the walk and tell you all about it. Thank you to everyone who came to support Bridger and all of the CHD families.

Hello again

Well it has been one month and two days since Bridger left this world. To me it seems like much longer than that....... just a quick reminder, the Heart Walk is on Saturday. The one we are participating in is through intermountainhealinghearts.org NOT the American Heart Association. AHA only gives 4% of their funds raised to CHD research, where IHH(ours) all goes to CHD related needs. If you are going, there are directions at the IHH website on how to get to the park in Provo, and you can register that morning before the walk. Even if you can't come, just think of our sweet boy and all of the other beautiful children affected with Congenital Heart Disease, it would mean a lot to me.

Happy birthday!

Today is Bridger's 1st birthday! Happy birthday my sweet boy! We went to the first Ute game last night, it was bittersweet. We bought Bridger's ticket this year thinking that he would be going with us, so we had our 3rd seat, empty next to us. We are going to keep that seat for him from now on, so that he can always be with us at our "family thing". It will be 4 weeks tomorrow, since Bridger has been gone. I miss him every day. I love you Bridger James!

Well, it has been 19 1/2 days since we lost our little boy. I think that now the shock is just beginning to wear off and it seems as though this isn't just a terrible nightmare. Danny is back at work, I am starting work next week, each of these steps makes it all seem more real. I know that we are not the only ones who have lost a child, but that sure doesn't make it any easier. One week from tomorrow is Bridger's first birthday, he was so close. I guess I will keep trying to hold on to this fog as long as I can, but who knows how long that can last.

Just a quick clarification

I need to clear one thing up. The heart walk that we are participating in for Bridger is put on by Intermountain Healing Hearts, not American Heart Association, although they are both on the same day. To register for the heart walk for Bridger go to intermountainhealinghearts.org at the end of the walk there will be a memorial service for Bridger, as well as other angels. If you have any questions let me know.

Thank you!

We would like to extend all of our thanks to everyone to has been such an amazing support to us. It is wonderful to know how loved Bridger is. We are very appreciative for all of the beautiful flowers and all of the donations made in memory of Bridger. I will continue to use this blog to document all of the activities that we participate in for Bridger. We would like to thank my uncle Lee for giving us the idea of a tree for the festival of trees. Danny and I are going to decorate one each year to donate, we will also participate in the heart walk this September in Bridger's name. I know it won't be as exciting, but we will still keep posting pictures of these events. Thank you again for everything. I hope that we can live up to our son's impact and strength.

Bridger's Obituary

Bridger James Smith 09/04/2008~08/08/2009 Bridger was gratefully received by Staci and Danny Smith on September 4, 2008 in Salt Lake City. From the moment Bridger entered this world, he had a way of winning the hearts of all those around him. From birth to the end of his time here on earth, Bridger fought many battles and until the morning of August 8, 2009, he was able to persevere with a smile. It was while in Texas being evaluated for a heart-lung transplant that Bridger faced his final battle in this world. Bridger is a miracle to his parents, to the medical world and to all those who had the privilege of knowing him. We will forever miss our beautiful, blue eyed boy and look forward to the moment we see his smiling face again. We would like to give our love and gratitude to all of our family at Primary Children's, because of your love for our son and dedication in your work, we had an amazing 11 months and four days with Bridger. Bridger we are all better for knowing you. Your mom and dad love you more than you will ever know! Thank you for choosing us! Services will be held at Jenkins-Soffe Mortuary at 11:00 a.m. on Saturday, August 15, 2009, 4760 South State Street, Murray, Utah, with viewings on Friday at the mortuary from 6-8 p.m. and Saturday 10-10:45 a.m. prior to the service. In lieu of flowers, a foundation has been arranged in Bridger's name at Primary Children's Medical Center. All funds raised will go toward sleep chairs in the Pediatric ICU. Online condolences at www.jenkins-soffe.com

Coming home

We are bringing our sweet angel, Bridger, home to Utah this morning and I am terrified. As each moment passes, it brings me one step closer to the reality. So far everything has been a big haze with little moments of recognition that Bridger is not in this world anymore, but I fear that walking into our house without him will really smack me in the face..........I don't know what else to say.............Bridger I love you!

The Services

Danny and I want to thank all of you for your endless prayers and support. We love our little boy more than anything and though we have always known this would come, we secretly hoped that he could continue to perform miracles. I think that if it were up to his soul, he would still be here, amazing us at every turn. Unfortunately his body could no longer keep up. I was with him when it happened and was able to hold him for hours afterward until Danny arrived in Texas. We do not regret giving Bridger every chance at life, but my heart is broken that he was not cared for by his family at Primary's in his last moments of life. Even the short time we were in Texas, he had the staff hooked. More than one person came tearfully to our room after he passed. He is just so amazing. The funeral services will be this Saturday, August 15, 2009 @ 11:00am at Jenkins-Soffe Funeral Home (4760 S. State Street) with a viewing at 10:00 that morning as well as Friday evening from 6:00-8:00pm. Danny and I are so grateful to all those who have been a part of Bridger's life, as well as ours. We are especially touched by all of our family at Primary who had a part in helping our boy be so happy, even living in a hospital.

We Love You Bridger

After his nearly year long battle, Bridger has decided to return home. Our special little guy gave us so much to be thankful for and proud of during his short time on Earth. Bridger will be sorely missed and always loved by all of his cousins, aunts and uncles, grandparents, friends and everyone else who had the pleasure of meeting this little fighter. We will be forever grateful for the time we were able to spend with Bridger, even if it was way too short. Our thoughts and prayers go out to Staci and Danny.

Onward and upward

The titrations of Bridger's PRAs are back. There is one antibody they would need to avoid in a donor, but otherwise we are okay. The evaluation for transplant is kind of like a scavenger hunt, you have to research and evaluate one thing before you can move on to the next. Next for us is a chest CT scan on Monday to see what Bridger's vessels look like. He will also have more blood drawn on Monday for the heart end of things, these results could take up to a week. We got moved into the progressive care unit last night. Bridger and I each have our own beds and even our own bathroom and shower, there is a big window that looks out on to the city and an actual door to close the noise out. As long as Bridger stays stable for Bridger, we will stay here. Until Monday we just need to sit tight and do our best to prevent infection or any cardiac/pulmonary crisis.

A lesson in biology

Bridger is standing on the floor and holding onto the chair with physical therapy.

Today we will have a lesson in biology. Bridger's PRA levels are back. There are two classes, class I and class II. If the class I is greater than 10%, they will not list him for transplant. Bridger's class I is 0%, so we are home free there. His class II is 15%, which could be worse, and it is not a deal-breaker for transplant. So now they will further analyze his class II PRAs to see exactly what they are, and for now we continue on with the evaluation. On Monday he will be schedules to have a chest CT scan to look at all of his vessels and he needs a developmental evaluation. We are hopefully moving to the progressive care unit today, where Bridger will not have to share his bed with me and we will have a little more room to walk around. As for our pictures above, Bridger has been working with physical and occupational therapy the last couple of days. He knows that they are new and is trying to get away with fussing at them so they will leave, he has been with his old PT and OT for so long, they knew how far to push him without really making him angry, but this team has to start from scratch. Bridger is sure giving them a run for their money. When I hear more on the PRAs I will post, but for now we are still a go on the evaluation.

Okay

Big morning already. Our lung transplant doctor came by, as well as the heart transplant doctor this morning. Their two teams met with the surgeons early this morning about Bridger. The main surgeon came by last night to talk to me and take a look at Bridger. The general consensus is that this is a very high risk procedure, and the challenges that we would face would be many. The pulmonologist is optimistic, the surgeon is on the fence and the cardiologist is much less optimistic. Throughout this journey, Danny and I have always been clear about our wishes for Bridger. If it is something that can offer Bridger and improved quality of life,then we would like to be able to offer that to him. The problem is that we need caregivers who are willing to provide that care and are able to trust us in doing what is right for our child, not what they think they would do for their own. When it really comes down to it, you will never know what you would do until you are in that position. Okay, I'll get off my soapbox now. Anyway, the big thing today is waiting for his PRA level to come back, if it is to high, then he will not be eligible for transplant because his antibodies would attack the new organs. If this is the case, we will be coming home as soon as possible. If they are low enough, then we will proceed to further testing. As for Bridger, he is having a good day so far. He is talking to all of the physicians and nurses, if they are not paying attention to him, he just talks louder and louder until they can't help but notice and then he just laughs at them. I think it is pretty cute. We are off isolation now, no more masks and gowns. They always test for viruses whenever there is a change in condition and along with this test comes isolation precautions. So at least now, Bridger can see everyone's faces and smiles. I'll let you know when we hear about the PRA.

Happy 11 months old!

Bridger is 11 months old today! Our little man is growing up. Bridger slept pretty well last night and was up bright and early today. Dr. Mallory (head of lung transplant) came in this morning and said that since Bridger is AB+ he is a universal recipient for his organs. That is great news because he will be able to receive a heart and lungs from any donor, not just specific blood types. He started working with physical therapy this morning and did well, he has been standing more and more. Bridger now has 7 teeth that have come through his little mouth and seems to get taller every day. The teams are meeting about Bridger tomorrow morning and we should have some more definitive answers after that.

A better day today

We made it through the weekend and had a better day today. Bridger was able to have a break from his CPAP mask today and did awesome, so he is able to stay on high flow as long as he continues to look good. We met Dr. Mallory today, he is very assertive, which you all know I like. He came and asked how the weekend was, I told him my concerns about the equipment and different things and immediately he had me call Primary's to find out what they used on Bridger. Before I was even off the phone, he was looking things up and having the department heads order the supplies so that Bridger could have what he is used to. That immediately lifted my spirits. Bridger has been sitting up again today and flirting with the staff, so I know he is feeling better. He has also taken quite an interest in standing today, we have always tried, but he never liked putting weight on his feet until now. It is kind of fun, everytime I pick him up, he just wants to stand. Hopefully today will be sign of good things to come. The lung transplant team ordered his bloodwork for the evaluation today, so he will be giving a lot of blood and will probably need a blood transfusion this week. So far that is all that I know. We miss you all!

time for a change

When we first got here, Bridger looked pretty good and the doctors were pleased with everything. I am glad they saw that first because today he has changed, quickly, as usual. Last night is when it started, he just didn't sleep well, and couldn't get comfortable. We couldn't keep his oxygen levels up and his heart was increasing. This morning it all just continued, his oxygen sats kept creeping lower and his heart rate was up to 190. All of the equipment here is different from ours, I asked for nasal CPAP, but they only have that for small infants-we all know Bridger is not small. We tried it but he was too big and it couldn't keep his pressures up. We ended up changing to a CPAP mask that covers his entire nose. That is what he is on now, so far he is handling that okay, with some ativan. They are starting a continuous drip of lasix to help keep fluid off, so hopefully that will help and he can go back to the nasal cannula oxygen. His heart rate is still up, but his sats are better. I guess we will see.

24

We made it through our first 24 hours here at Texas Children's. Everyone has been very nice here, things are just very different. Bridger is already making friends with his sweet smile and his professional plastic tambourine music, one nurse asked if he was a rock star :). The plan for now is just for the team to get to know him better, because his health history is so complex that may take some time. Hopefully this week, the heart transplant team and lung transplant team will meet and discuss him in detail to map out a plan. We will let you know as things progress.

We're here

Well, we made it to Houston last night. The "kangaroo crew" arrived at Primary's just after 4pm and we got to Texas Children's about 10pm local time. This is the plane we flew on, it had just enough room for Bridger's stretcher, the doctor, the nurse, respiratory therapist and me. Bridger was strapped into a makeshift carseat on a stretcher, I was worried that he would get stressed out being strapped in for so long, but he did great! Half way through the flight I was able to hold him for a bit, but he was too busy playing with the medical team to be held down by mom. Flying in, we were able to see the medical center, it is as big as Salt Lake-just the medical center! It is all very overwhelming. One of the big reasons we chose Texas was that they said I could sleep at the bedside, as I have been doing at Primary's. When we arrived, however, they said that I would have to sleep in the waiting room. After all that had happened yesterday, this about pushed me over the edge. I explained our situation, and how in the last 11 months I had only been away a handful of times, and in the end we worked it out. I had to sign a release to let Bridger sleep in a big bed with me, but we did it. I am ordering a sleep cot that I can tuck away during the day, so that he can sleep in a crib, but until it gets here, Bridger is stuck sharing with me. This morning, I went to start some laundry on the 16th floor and grabbed something to eat, but I got lost on my way back to the PICU. This hospital is 22 floors in itself and there are bridges to all of the other hospitals as well. I am not sure what I am doing, but I guess I'll figure it out. A couple of the benefits here are that I can eat in the room with Bridger and I don't have to leave for shift change. So even though, we are very far from all of our support and love at least Bridger and I can be together other than when I have to shower, get food or do laundry. We miss you all so much. This is the scariest thing that Danny and I have ever had to do, but when I get past my fear, I still fell that this is right for our son.

TEXAS- here we come!

We got the call this morning, the critical care team from Texas Children's is flying in to pick us up tomorrow morning. The evaluation can take up to a month, but hopefully at the end of that time, Bridger will be able to be listed.

After 11 months of life in and out of the PICU, the staff decided that Bridger is part of their family. Yesterday, we were able to go down to security and have his very own badge made.

Let's catch up....

We have been so busy talking about the boring stuff, let's catch up on all of the fun things that have been going on this week..... One of our nurse practitioners is also on the life flight team, last night she took us up to the roof to watch the sunset and while we were there a helicopter came in. We were able to check it out, they are quite small, there is only enough room for the patient, the pilot and two nurses. Its a good thing that this isn't what we are taking to our new destination. P.S.--Daddy will be so jealous!

The sunset was beautiful and it was even quite nice outside.

On Monday, a therapy dog came to see Bridger, her name was Rosie. She is not the same as our boys at home, but we sure enjoyed her company.

Since Bridger had his central line taken out of his leg last week and placed in his chest, he was able to sit his lower half in the bathtub. At first, he wasn't quite sure what to think, but then he decided it wasn't so bad.

Texas?

I spoke with the coordinator from Texas Children's this afternoon and due to some communication issues, they were unable to setup transport for tomorrow. Now, the plan is for their head physician to talk to our head physician in the morning and unless something comes up we will either fly to Texas on Thursday or else we will go home tomorrow for a few days and check back in Sunday to fly out on Monday. I'll let you know what I find out tomorrow.

Webcammin'

For months my sister has been asking me to setup a webcam so that she can see Bridger from wherever she is living. I kept postponing it, but finally with the possibility of moving coming our way we setup skype videocalling. Yesterday we called my sister back east, one of our nurses who is in New York and some of the grandparents. It was so fun, Bridger was able to see them all and they could see him too. Today I talked to Texas Children's who said that there are some details to work out, but we will know tomorrow if they are coming to pick us up Wednesday morning. It was a lot to take in, but we are grateful things are hopefully moving along. I'll let you know if we need to get out our cowboy hats! :)

Happy 24th!!!

Bridger had a pretty good day yesterday. He might be working on another infection, but he is still in good spirits considering. Last night our nurse took us out on the terrace to watch the fireworks! It was great, yet another holiday we were able to celebrate as a family.

Turns out we weren't the only ones with this idea and another mom brought glow necklaces for all of the patients. Bridger didn't know quite what to think. He wasn't that interested in the fireworks either, but more in the kids he saw around us. But it was still fun.

We have been able to take a few short walks with our nurse. Bridger just likes to kick back and enjoy the ride. We have interest from Texas Children's and Pittsburgh Children's to have us go to their facility for evaluation and St. Louis Children's has said "yes" they are willing to evaluate Bridger. We are hoping to have something lined up sometime this week. Until then we are going to keep going for short walks-if Bridger is up to it and maybe even go home for a couple of days before we make our move. Where ever we go the evaluation can take up to a month before they say whether or not they will put him on the transplant list, this means that no matter what Bridger and I will be gone for a while. I guess this is one way for us to see a new city, even if it is just looking out of our hospital window. Always a new adventure!

Extubation!!!!

Bridger went to surgery yesterday, where they were able to place a central line in his right facial vein. You can't see any part of it except where it comes out of the body in his chest. I think this will be much better where he won't have anything impeding his arms or legs. This morning his breathing tube was taken out and he was placed on high flow oxygen (this is what we have at home). Also this morning the cardiologist in the ICU informed us that there are four other centers to send Bridger's paperwork to for heart-lung transplant. So the ones on the list are St. Louis, Texas Children's, Pittsburgh, Philadelphia, Nationwide children's, and Miami. Here's hoping that at least one of them will be able to see more than just Bridger's chart, maybe they will be able to understand his strength and resiliency. After Bridger was extubated, I was able to pick him up all by myself (when he is intubated, it takes 3 people to get him in my arms) what a gift to be able to pick him up again whenever I want! Today has, so far, been a great day!

No go on the PICC

We went down to the specials lab this morning to have a PICC line placed in Bridger's arm so that the infected line in his leg could be removed. The doctor was able to get into the vessels of each arm, but unable to thread the catheter all the way to his heart. Not exactly what we were shooting for this morning, but they were able to switch out his g-tube for a g-j-tube(this feeds into his intestine, not the stomach). That will be helpful because Bridger has been vomiting frequently, so he is not absorbing his calories or his medications as he should be. Since we were unable to get a PICC line, Bridger will go to the OR tomorrow to see if they can surgically place another central line. Keep your fingers crossed.

What a relief!

Every time Bridger gets intubated and paralyzed, we always wonder if we will ever get to see his beautiful blue eyes or his funny personality again. This time was no different, but today, they decided to give Bridger a trial off of the paralytic. I was very nervous, but he tolerated it well. The first thing he went for was opening his eyes and they are just as amazing as I remembered. He went on for about 20 minutes with kind of spastic, but not stressed movements in his arms and legs. I imagine coming off of a paralytic medicine to be like trying to get your movement back after your leg falls asleep. With all of that strange tingly, itchy sensation. I was worried that he might get stressed, but the next thing I knew, he was handing me his foot so that I could kiss it (this is one of his favorite things to have the nurses do). After that I knew my baby was back in action. He continued to play for 2 hours after that, making up for lost time I guess. I asked our nurse to give him a little sedation so that he wouldn't over do it and have to have the paralytic turned back on. Needless to say, today has so far been a great day! Bridger is already back to his old mischief, even with his breathing tube still in.

He has his angry eyes on

Bridger is still paralyzed and he is not happy about it (I wouldn't be either). Over time his body begins to adapt to the paralytic, he seems to muster up all of his energy and get very angry inside. This, of course, is not easy on his body and it shows. I am hoping today that we may be able to lift the paralytic some, and increase his sedation so that he doesn't feel as trapped. Yesterday the bacteria causing his infection was identified, it is a multi-resistant organism, so we had to change his antibiotics again. He also got blood yesterday, which we all know, he loves. I don't really expect too many changes today, but you never know.

I moved back in last night!

Yesterday while I was visiting the PICU, one of the nurse managers made a deal with me that if I could sleep at home one more night and catch up on my rest, they would try and get Bridger moved to a room where I could have my sleep chair back. I said okay because Bridger was intubated and very sedated anyway. As I was getting ready to go bed last night, we got a call from the doctor asking us to clarify our advanced directives for Bridger, this is not a decision to be made over the phone and by someone else's assessment of him. So I asked if I could please come back last night and not have to wait until the morning? Our doctor said yes and so here I am. Shortly after I got back to the hospital Bridger's blood culture showed positive for infection. This is good and bad, we don't want him to be septic, but at least it is a reason other than just his heart for his quick decline. They had already started antibiotics yesterday morning, which is good, now we just have to see if Bridger is able to work through yet another infection. The infectious disease team is being consulted again because of his chronic hospitalizations to see if he needs preventative antibiotics or a longer course of antibiotics. He also had 2 echos this morning, one from the inside of his throat and one from his chest. I haven't heard the official results yet, but there were no masses noted in the heart, that is a relief. We have already had a big morning, I hope we can just keep it quiet for the rest of the day. Maybe we will get our new room today if Bridger feels up to a move.

A lot on our plate

The day started out with a call that Bridger had a quiet night. My next call was that his white count was increased (sign of infection) and his BNP was increased (sign of heart failure), but that he was still doing fine. I asked if I could come see him today, but they were still a little leery of that idea and asked if I could wait until tomorrow. The next phone call I received was from the doctor saying that Bridger had taken a turn and would probably have to be reintubated (put the breathing tube back in), I asked if I could please come see him and she asked to have the chance to intubate and stabilize him before answering that question. Finally I got a phone call saying that I could come and that someone would meet me outside with a gown and mask that I could put on before going into the hospital. After 3 long days I finally got to see my baby boy, I have never been apart from him for that long. He was sedated and paralyzed, but they said he was looking better than he had just before I arrived. I was able to sit with him for a few hours. While I was there, I received the news that Stanford declined evaluating Bridger for transplant, they said he is higher risk because of his multiple heart surgeries. So we are sending his chart to St. Louis and Baylor (the only two other facilities in the U.S. that perform pediatric heart/lung). We have some things to work out in the mean time, Bridger needs to stabilize and extubate, we are going to try and replace his G-tube with a G-J-tube(one that feeds into the intestine, not the stomach) and also get our bearings back. Tomorrow they are going to let me move back into the PICU, it isn't standard protocol, but if we are running out of time I can not spend anymore time away from Bridger than I have to. So we will play a little more of the waiting game for the next few days.

Seriously?

Yesterday morning I started having a rumbly tummy. It became more and more frequent and by 1:00pm I was throwing up. Things only got worse, so Danny came and picked me up and took me to the doctor where I tested positive for Influenza A. This is blog is not about me, however it affects Bridger in the fact that I am now quarantined from him until I have been without symptoms for 24 hours. We can only hope that he does not get sick too. He did roll all the way over and back today, all by himself so that is good to hear, I am just sad that I missed it. Stanford called today to say that they have Bridger's paperwork and have begun to look through it, hopefully we can get an idea of what they are thinking sometime this week.

Okay, let's get our game faces on!

Sorry, I had every intention of posting yesterday, but as you know things come up. Bridger was extubated on Saturday and did much better this time. He was extubated to high-flow oxygen this time instead of CPAP, so he was less angry which always helps. He has stayed extubated so far...he didn't really sleep on Saturday because he was so happy to not have the breathing tube in. We also did not sleep Saturday night, Bridger was very restless and uncomfortable, I was concerned that his heart was struggling again (lack of sleep is usually his first sign). Sunday morning, we talked to the doctors who were also concerned and although it is usually heart or lung issues, they wanted to rule out regular old baby issues first. So his ears were fine, then they checked his throat and it was full of blisters. They said he has hand/foot/mouth disease, I just started laughing because finally something that regular babies get. Of course I don't want him to have anything, but of our options this is a better alternative. Anyway, Bridger is returning to his usual self as each moment passes. Yesterday he was throwing his toys out of the crib and laughing as I picked them up and washed them over and over. Right now he is taking a much needed, unsedated morning nap. We are checking in with Stanford to see if they have received our paperwork and I am looking into other facilities in case Stanford declines. Since we are still unable to determine what caused Bridger to crash last week, I believe more and more that as always Bridger is giving us a sign of what he wants. He is telling us to get going on the transplant end because he can hold out, but not for much longer. We have always tried to make our decisions in the best interest of Bridger, but he usually makes the decisions for us. This will be a long hard road, but if our son can do it, so can we!

A quiet couple of days

Yesterday there were no changes made for Bridger. We just wanted to have a quiet day where Bridger could adjust to the changes from this week and maybe get some rest. This morning when I woke up he was more himself than I have seen all week. He was playing with his toys and just hanging out. If he didn't have his breathing tube in, I am sure he would have been chatting up a storm. When I got up I gave him his tambourine which he immediately started tapping on his breathing tube. It was just what I needed to start my day! So on a side note I have not yet learned how to add other heart family blogs to my blog, this other amazing heart mom has them on her blog. It is: whatscookinatthecooks.blogspot.com, you can look it up and connect to other heart families who have been through similar experiences. This mom, Hilary, is so sweet, she came to visit me the other day and share a little of her journey with me. Her son was here getting a heart transplant when we were here in September for Bridger's very first surgery. So take a look if you would like. I have been able to hold Bridger the last two days, which it is no secret that I love holding him. Let's have a great day!

A new day

Yesterday they tried to extubate Bridger, he was on CPAP for 2 1/2 hours and was really struggling. He was re-intubated and it took a bit for him to relax, but finally he was able to. We are still not quite sure what happened yesterday or even on Monday. Today the plan is just to give him a good rest and see how it goes from there. Yesterday all of our paperwork was sent off to Stanford, so we will see how this next few days to week goes and if Stanford agrees that it is worth evaluating him, then we will see if Bridger feels like he is up for this challenge.

New plans!

Today has been a very stressful and emotional day. It looks as though we have reached the end of our rope in terms of options for Bridger's medical treatment. Today Danny and I have actively made our request to have Bridger reviewed as a candidate for heart/lung transplant. We have chosen Lucille Packard @ Stanford in California. The head surgeon there was the one who performed the first successful heart/lung transplant in 1985. This is also the closest location for Danny to get to us in case of emergency and the Ronald Mcdonald house there had a specific wing for us to live after the transplant. This is a big decision for us, but we feel that our beautiful son had not yet told us that he is ready for us to just take him home and let him die, so we are going to give him this opportunity to hopefully do the things that babies and toddlers should be able to do. Our paperwork is being submitted and if Bridger is a candidate he and I will be moving to California in the very near future. Please keep your thoughts and prayers with our sweet little man.

Another scare!

We are back in the PICU, yesterday as we were getting ready to come to our cardiology appointment, Bridger turned blue again. He was have a terrible struggle trying to breathe, so 911 was called and off we went. We got to Primary's just in time where Bridger was intubated and moved back into the ICU. It took some time, but they were able to get him stable (as stable as Bridger can be) he is sedated, but at least he is not as stressed today. He is getting a blood transfusion right now, which he always likes, and we are trying to dry out his lungs. So for now it is just the wait and see game again.

Home again!

Sorry I am a little behind again on posting. We are home! It always takes a few days to get settled again, but we are loving it. Bridger is now home on 3 different ICU- only pieces of equipment, but we are so grateful because otherwise we could not be home. So far he seems to be doing okay, usually our first few days home he spends catching up on sleep which is good for him. It is too hot right now for us to go walking outside, but maybe when I get a little more situated we can go at the mall before it opens. We hope you are all doing well. We miss you and love you!

Sooooo close....again

Well we were supposed to go home today, however, Bridger's body did not agree with that plan. He started declining again the last couple days, he was taking on more fluid and the amount of blood thinner in his body is too low. A few kinks that must be worked out in order for us to go home. They have put his back on IV diuretics and had to start a heparin IV until his coumadin is in his body enough that his artificial mitral valve won't clot off and have to be replaced. He has also been vomiting more over the past 36 hours, sometimes even vomiting his meds which doesn't help anything. I guess we will just sit tight over the weekend and re-evaluate on Monday how everything is going.

Art project day

If you have ever been to Primary's you may have seen the different art work on the ceiling tiles, they have been painted by patients in the hospital. Well whenever we are here I always wish that we had one for Bridger. Yesterday I asked our child life specialist if Bridger had earned the privilege of painting one and she said yes. This is our tile that will go on the ceiling at the cardiac end of the PICU. The seaweed and the fish are made with Bridger's hand and foot prints. He didn't care much for the hands, but he was giggling when I painted his feet with the paint brush. Hopefully none of you will ever be in the PICU, but if you are, make sure to look for Bridger's tile. As for everything else, we are still working toward getting home this week. I was trained on Bridger's new pump and how to mix his new medicine yesterday. The pharmacy will also come again when we are discharging and have me mix it again in front of them before we can go home. Bridger is back on his oral diuretics, so they are working to get his high flow oxygen back to the level we were using when we came in last week.

The plan....

The echo results on Friday showed an improvement in Bridger's TR gradient (indicative of his lung pressures) from 60 to 51. Over the weekend the Flolan dose was slowly increased and his Milrinone was slightly decreased. After Saturday night, he seemed to tolerate the dosing. On Monday, one of his diuretics was changed back from IV to oral and today the other was changed. If Bridger tolerates this well, we will hopefully be heading back home soon. The specialty pharmacy is coming today to teach me how to mix his Flolan (it is only stable for hours after being mixed) and I will also learn to use the new IV pump. A few things on the board this week.

Okay, this is going to be a big one! I have been lazy on keeping up with the blog for the last month, so here we go. Starting with the newest news. They tried Bridger on the Flolan again yesterday, beginning with a smaller dosage and working our way up. His x-rays remained unchanged through the night, and he even seemed a little more comfortable. This morning they are increasing the dose again and will do an echo to see if the flolan has improved the pressures in his heart and lungs....here's hoping. Our sweet boy has not told us that he is done playing with us, so we are continuing to explore all possible options for him, one of which includes a heart-lung transplant. If the flolan and other medicines do not help and we choose this option, Bridger and I would be moving to a hospital that performs this surgery(probably Stanford Children's-San Francisco) to wait for a transplant. We have not done the work-up to be listed, but it is an option that we are checking into. As for Bridger he is still his sweet self, smiling with his CPAP on, laughing and playing during his assessments from his doctors and nurses. He is still growing, he sits up without support, he rolls all the way over and grabs everything in his sight. He is very strong and continues to amaze me everyday. Thank you for all of your support, thoughts and prayers. We hope you enjoy all of our new pictures.

Two teeth have already come through on the bottom, and two more are working their way out.

A little tummy time with my CPAP on.

Aunt Jessica is in town and she came to take pictures of our family.
We always hang out in Mom & Dad's bedroom, so what better place to take our pictures.
Daddy is trying to get me!

Let me play with that....

Daddy and Bridger just hanging out watching TV, we love sportscenter

I loved being home!

Mom, not in front of the camera!

Remember all of those noisy toys mom told you not to get for me,

well now she looks specifically for things that I can be noisy with.

Here is my tambourine.

well......

For those of you who don't know, we are back at the PICU. On Saturday, Dr. Day called and said that he would like us to check in on Monday in order to try a new medication for Bridger's pulmonary hypertension. So after our clinic appointment yesterday, we were readmitted to the PICU and Bridger was started on IV Flolan. As the night went on Bridger's breathing only got worse and on this mornings x-ray it showed that he had a lot of extra fluid in his lungs. That is one of the side effects of this drug, but we were hoping he wouldn't take on so much fluid. So this morning, the Flolan was stopped and Bridger was put on C-PAP to help his lungs. For now, the plan is to try and dry Bridger out and then reassess from there.

Echo results

Sorry I didn't post sooner, we got the echo results Monday but I didn't talk to the doctors about their plans until yesterday. On Bridger's echo from Monday it showed that the medicine he was started on last week did not make any improvement in his lung pressures. So yesterday when I spoke with two of the cardiologists, they thought it was best to try one or two more oral meds to see if anything changes, and if not then we will try an IV medication to see if that helps. The downside to the IV med is that it can relax the lungs enough that they are not able to protect themselves from taking on fluid, so that would have to be monitored very closely. On Friday I will take Bridger back up for some more blood tests and probably next week he will start a different medication to help his lungs and heart.

Home again!

Bridger was started on a new medication Friday night. On Saturday morning, our pulmonary hypertension specialist called the hospital and said that if Bridger's blood pressure was stable then we could go home Saturday and come back in Monday for testing to see if the medication was helping. That sounded great to us! And since we have our own ICU at home we can pretty much do all of the same things without being at the PICU. So we came home Saturday afternoon, and we will go back in tommorrow to see if this medicine has helped.

Cath lab

Well Bridger made it through cath lab. There were no changes in his pulmonary pressures from two months ago, so they tested some medications again. Bridger also had a CT scan of his lungs to check for any other pulmonary disease that might be causing increased pressures, but there was none. He does have an obstructed pulmonary vein in his left lower lung that is contributing to his struggles. So the plan for now is to try one of the new medicines to see if it helps, they will do another echo in a day or two and we will go from there. So this isn't the quick overnighter we were hoping for, but we want what is best for Bridger.

Just an overnighter

We got to come back home after just one night. Bridger had a blood transfusion and a few doses of IV diuretic yesterday. The doctors said since we pretty much have our own ICU set-up at home that we could do the rest here. So 26 days at home and 1 overnight stay in the ICU, we'll take it.

Our summer home too?

Bridger had a bit of a struggle over the weekend, that continued Monday at our cardiology appointment. He had been vomiting more and more since Friday, and his breathing was getting worse. While we were in with our doctor, he decided that we should be admitted for a "tune- up". PICU here we come- AGAIN. So we are back. Cath lab is still scheduled for Friday, so our plan is to maximize Bridger's diuretics, give him some blood and hope that he is going into cath in the best shape he can be. For now it looks as though our winter home may also double as a summer cottage, but hey we'll take it if it keeps our little boy happy!

First family outing

This morning we went with the Hope Kids to see Night at the Museum: the Smithsonian. It was really nice that Danny, Bridger and I were all able to go together, but it was also overwhelming to be around so many people for the first time ever. They had two different theaters just for the Hope Kids, and we sat on the edge so that we were close to all of Bridger's equipment and I could get out with him if I needed to. The movie was funny and Bridger didn't even mind the noise. We have been home 24 days now and each has been heavenly. We check back in to Primary on Friday for cath lab, and we will see how things go from there.

Our first outing with the Hope Kids

We are members of an organization called the Hope Kids. This is a group that works to provide hope to children with life-threatening illnesses and their families. Hope Kids has different events going that members can attend and not be worried about crowds or germs. So on Wednesday this week, we got to go to the Living Planet Aquarium. There were only other Hope Kids there, so I was able to take Bridger and participate in something that most can do at anytime, but we cannot because we can't risk Bridger even catching a cold. Needless to say it was great! We were only there for about twenty minutes, but that was enough and when we were done Bridger was pooped. Next week we get to go see Night at the Museum at Jordan Commons, before the theater opens. Yesterday we had to hold off on our daily walks because Bridger was having more trouble than usual breathing. So we stayed in and turned the high-flow up a bit to give a little extra support. He looks a little better today, so we will just keep an eye on it. We have been home longer this time than we have been in the last five months, so we are just trying to enjoy every moment.

It's been a while

Sorry it has been so long since our last post. Bridger had a cardiology appointment on Monday again, where most everything was unchanged (not worse, so that is good). As far as what we have been doing these last two weeks, yes I said last two weeks! We try and go for a little walk outside every morning and every night so that Bridger can enjoy some outside air, and trees, and flowers. We work on his different exercises between naps, read stories and play. These things probably don't sound very exciting, but to us they are a dream come true! We also want to thank everyone who bought bracelets for Bridger, we never knew that so many were watching over him- THANK YOU!

Doing our best to stay home

We had a little spook a couple of nights ago. On Sunday night Bridger couldn't sleep and was becoming more and more restless. He had an appointment with his cardiologist on Monday and when they checked his heart it was struggling again. So the doctor made some medication changes and increased his oxygen use to see if that may help keep us out of the hospital a little longer. That night at home, Bridger started turning gray, and his lips and nose were going blue. I was scared that we would be taking another ambulance ride back to Primary's, but Bridger was able to get through it and we were able to stay home a bit longer. So we are just taking it moment by moment, supporting him in whatever way we can to be able to safely keep it at home.

Here is Bridger in some of his big boy clothes

HOME AGAIN!

We're home again! We were discharged from the hospital on Wednesday afternoon with high-flow oxygen and IV milrinone (the med that is helping his heart and lung function). So far Bridger is doing well. This morning he was vomiting before his blood draw, so the also tested his level of heart failure which was increased from Wednesday, but still it has been worse. So he sees his cardiologist on Monday where they will check his blood again. So we are hoping to have a nice quiet weekend. I'll keep you posted and try to post some new pictures this weekend.

Bridger's Heart Heroes Wristbands

"Bridger's Heart Heroes"

Bridger wristbands are now available! You can buy one (or more) of these bright red wristbands for $5 each and become one of "Bridger's Heart Heroes". If interested in a great cause, please contact Maura Smith at 801-633-8817 or by email at jomakamcki@digis.net to purchase. Cash or check will be accepted (make checks payable to Danny or Staci Smith). Let's all show our support for Bridger's recovery and for CHD awareness. Thank you to everyone for your continued thoughts and prayers for Danny, Staci and Bridger.

A quiet weekend

Nothing much happened this weekend, the doctors just made some adjustments to Bridger's medications and oxygen. Otherwise we just kind of hung out. Yesterday, Bridger was a little unhappy due to the two upper teeth and two lower teeth that are trying to break through, but today he seems to feel a little better. He still has a couple more days of his IV antibiotics and they are working on getting his blood thinner at just the right level. He is still wearing his big boy clothes and looking so cute!

Big boy clothes

Today I dressed Bridger in clothes (usually he is just in a diaper because of all the lines coming off of him) I am starting to work on his temperature regulation again. Since he is always naked in the hospital, his body regulates its temp without clothes. So when I do get him dressed, he overheats easily. So he is getting dressed now, I turn the thermostat down and slowly turn it back up as his body adjusts. He looked so cute, he had shorts and a t-shirt and cute flip-flops. I'll post the pictures when I get them downloaded. Otherwise a pretty quiet day, they adjusted Bridger's oxygen a bit, changed one of his medications from IV to go in his g-tube, and we got to take a nap together on a playmat on the floor. Not too bad. So just taking things slow- which is fine by us!

A new central line

We made it to surgery today. Bridger was supposed to go in at 10:30am, but in true fashion they didn't take him until almost 2:00pm. It didn't take too long, he didn't bleed alot, and they were able to take the breathing tube out in the OR so all in all it went well. Now because of his pulmonary hypertension these smaller procedures are not as cut and dry as before, there is more risk in putting him on a breathing tube and under general anesthesia, so I am glad there were no surprises today. Bridger now had a central line in his right thigh, hopefully we can hang on to this one for a bit. I posted on the other blog that we have 400 cranes up here at the hospital, I think we may have surpassed the 1000, so maybe that means I will be able to make the same wish twice (wouldn't that increase our odds?). Thank you all sooo much for helping us with this. So for the rest of the day the plan is just to get Bridger back to where he was before surgery.

Fun!!!!!!!!

Yesterday Bridger was taken off of CPAP and put on high flow oxygen. He was feeling pretty good after a week of feeling terrible so he was in quite a playful mood. So we got out our playmat and Bridger, Danny and I played on the floor together. While we were down there one of our favorite nurses, Susan came by and said that she had to get some pictures of us. So thanks to her we have our first family pictures since mid-November. As for today, we were supposed to go to surgery today to have a central line placed, but due to his blood thinner we have to wait. So we are hoping to go on Wednesday. So I guess we will just have to play for a couple of days, darn!