Thursday, November 26, 2015

Feb 12th, 2014

Its almost a year and a half later and I can finally bring myself to continue my blog. Ive been putting it off thinking it will get easier to recall the worst day of my life, the day we said goodbye to my son.

He spent 6 days in the Cardiac ICU. He was so sick! He was poked over 40 times one day trying to get his central lines in for the medicine he needed for his precious heart. He had art-lines in, he had feeding tubes, his breathing tube. My poor baby had wires all over him. Chad called his medicine pole the christmas tree from hell. We couldn't hold him because he was so sensitive to things, he was actually in a medical coma so he would stay stable. They had him ready to be listed for a heart transplant. We met with the transplant team, the social workers, we went through rigorous questioning to make sure we could handle a child and his medical needs if he got a heart.

On Feb 8th Hudson was given his baby blessing in the hospital. It wasnt an ideal place to do it but we wanted him to have his blessing! Chad did an amazing job. It was a very emotional blessing, luckily our family was able to be in there for it!

Feb 12th, 2014 the surgeons decided it was in his best interest to take him back to surgery and try to relieve some of the stain on his heart. They wanted to go through his aortic valve down into the Left ventricle and shave off some of the muscle that had gotten so enlarged and they also wanted to look at his mitral valve and try and shave off some the chordae they believed was positioned wrong and blocking the flow of his heart. His official diagnosis was Hypertrophic cardiomyopathy with Left ventricular outflow obstruction.

At 3:20pm we walked our sweet baby down the hallway to the surgical sweet. Chad and I walked through the doors with our baby and we kissed him goodbye not knowing it would be the last moment with him. Chad wiped a sweet tear off his eye and we kissed him goodbye. That was so hard to hand him over to the surgeons. We know it was the right thing to do and that he was in the best hands possible but I will never be able to explain the pain and the anxiety of waiting through that kind of a surgery!

At 5:30 we got our first update he was on bypass and they had gotten started on the surgery and he was doing good.

About 7:00 Chad and I needed to go for a walk. All of a sudden we felt some major stress. We went for a walk on the patio and it was raining. Chad kept telling me that no matter what happened that we were going to be ok. He had to remind me that what we wanted and what the lord needed may be two different things. I think Chad had more knowledge of the lords plan than I wanted to admit to! Chad and Hudson always had a special bond and I know my little boy was preparing him for what was about to happen.

They were late on updating us and I was a wreck. I was pacing by the phone in the waiting room and my anxiety was growing quickly. I turned around and I saw the surgeon walk into the room. I could see the worry on his face! My heart sunk, I knew right then that something was terribly wrong! He took Chad and I into a private room and told us that the surgery had taken a turn for the worse. He told us that his heart was much worse than they had anticipated! His mitral valve was almost unrecognizable, he said it looked like cauliflower. And unfortunately because  he was so tiny there were no replacements. But the worse part is that he bled into his lungs and they couldn't stop it. They couldn't get him off bypass. Dr Eckhauser told us that his outcome was grim and that they would never be able to get him off the bypass. He gave us the option to take him back to the ICU on Ecmo (bypass) or to let him go home and not suffer anymore. Chad and I decided right then that his fight here on earth was over. We knew he tried his hardest and that he stayed here with us as long as he could! Thankfully although that was the most difficult decision at the same time it was the easiest. I didn't want him suffering anymore.

At 8:45pm our little boy returned to his heavenly father. I picture my sweet boy running into his heavenly fathers arms and receiving a huge hug. He fought a good fight and our heavenly father has bigger plans and a bigger mission for our sweet angel. We will miss you our sweet angel! Your 71 days of life changed me for the better and you touched more people in your short lifetime than I ever will in my long life! Until we meet again sweet boy!

Saturday, February 8, 2014

Primary Children's Hospital

On the night of January 29th our little huddy buddy started breathing kind of funny. Being a nurse I was worried about him. He looked fine, but i worried about his head bobbing and nasal flaring. Chad even asked me if I was just paranoid because he was our baby. I responded as yes, probably but I needed to make sure he was alright. I didn't want to take him to the ER because I didn't want to expose him to any virus's that were going around so I took him up the NICU where I work and had one of the respiratory therapist and one of the Neonatologist take a look at him. He actually looked pretty good but he was breathing harder than usual and his heart murmur was louder than usual (he has hypertophic cardiomyopathy that was being treated by a cardiologist and watched closely).  The Neo told us to go home and notify him if things got worse during the night and he would call Dr Hoffman (the cardiologist) in the morning. Thankfully Hudson did fine through the night. The next morning Dr. Hoffman's office called us and said they wanted to see him in the office. So at 1100 that morning we were in his office and he did an echo on our little guy. Hudson was so good through his echo. He chomped on his binki and slept most of the time! Dr. Hoffman reviewed the images and gave us the bad news. His heart obstruction had gotten worse, it went from 40% obstructed to 80% obstructed in the last 4 weeks. So he sent us up to Primary Childrens to see the cardiac surgeons. So we ran home, grabbed a few things thinking we'd only be there over night, and headed up to Salt Lake City to Primary Childrens hospital. 

When we arrived they admitted us to the 3rd floor. Upon arrival we saw the resident, the fellow and then the cardiologist. This day we recieved some news that blindsided us!!!! Today the cardiologist at Primary's told us that Hudson's heart was really bad. He had a Left outflow tract obstruction and hypertophic cardiomyopathy in his left ventricle. They told us that he would probably need a heart transplant and that the surgeons here in SLC probably wouldn't do surgery on him because he is so little and there isn't much they can do for his heart this small. They sent his images out to a specialist at the Mayo clinic in Minnesota and would wait for him to respond. They uped his dose of Propranolol in hopes to be able to slow down his heart rate enough to help his heart fill more productively. 

Ouch! This was not what I ever thought I would hear! I had no idea his heart was in this bad of shape. And I know the Cardiologist didn't either. It just progressed so quickly since our last appointment. He has called me many times to check on Hudson and to help comfort me in this scary time!
We have lots of visitors and this room we are in isn't too bad. They know I am a nurse so I am pretty much doing all of his cares myself (which I wouldn't have it any other way! I love caring for my little Hudson!) He has a feeding tube in since he hasn't been gaining weight as fast as he should so we are trying to up his calories and get him to gain some weight so we can get him big enough to be able to have surgery at some point. 
I am so grateful for the priesthood and the blessings that Hudson has recieved. I think I ask Chad and my dad to give him a blessing every day. It makes me feel at peace and I know it is comforting my little baby.

After one of Hudsons blessings Chad opened up the scriptures randomly and it was D&C 8:5-10. "Oh, remember these words, and keep my commandments. Remember, this is your gift. Now this is not all they gift; for you have another gift, which is the gift of aaron; behold, it has told you many things; Behold, there is no other power, save the power of God, that can cause this gift of Aaron to be with you. Therefore, doubt not, for it is the gift of God;and you shall hold it in your hands, and do marvelous works; and no power shall be able to take it away out of your hands, for it is the work of God. And, therefore, whatsoever you shall ask me to tell you by that means, that will I grant unto you, and you shall have knowledge concerning it. Remember that without faith you can do nothing; therefore ask in faith. Trifle not with these things; do not ask for that which you ought not. " At this point all I can do is turn my faith to God that what is right for our little Hudson and our family will be done. 
Hudson is the sweetest, fiestiest little guy! He is the best snuggler! I never want to put him down because he LOVES to be held! He fusses until you pick him up and snuggle him into your arm, then he is happy and content for hours! I just love this little guy so much! 

One night after hearing about the possibility of needing a heart transplant, I was contacted randomly by a woman on the internet who lives in Lehi with a little guy that has Noonan Syndrome and received a heart transplant at 3 months old! I cant tell you how much hope this lady has given me! Her little boy and Hudson are almost identical with their heart problems. That night she gave me hope that we needed so bad! That night I felt like something could be done!
Hudson loves holding his daddy's hand! Seriously when he is upset and wont calm down, if Chad can get to his hands and hold his hands he calms right down! That was the case in this picture! He was so upset and I couldn't get him to calm down and I was trying so hard to keep him calm all the time so his heart wouldn't get stressed. Chad grabbed his little fingers and Hudson instantly calmed down and wouldn't let go of his fingers. Cutest most precious thing ever.
We have been at the hospital longer than we thought. They have checked many echo's  and have upped his Propranolol to the max doses. Now we have to stay until the surgeons have their big meeting on all the patients so they can review him. So we do a lot of facetime with the girls! Every night we talk to them on facetime and they get to talk to Hudson and us. Thank goodness for technology!
Feb 4th, 2014 Today Huddy weighs 7lbs.  He had another sedated echo yesterday which showed he is still obstructed and the propranolol isn't working as well as they had hoped. They want his heart rate down in the 80's and his is constantly 120-140 still. We have still yet to hear from the hospital and doctor at the Mayo Clinic in Minnesota. They are presenting his case to the surgeons tomorrow to see what they feel could be done to help him. They are increasing his calories to 27cal and we are not forcing him to eat orally right now, only letting him bottle feed what he can and the rest he gets through his feeding tube. Right now he is only taking 2-3 partial bottles a day, I don't want to force him to expend energy that he needs to grow so he can have surgery. No stressing this little man out! We need all the energy and calories that we can get! He is very gassy today and has been throwing up. I know its due to increasing his calories and filling up his gut. It's so hard on their little tummies. I feel so bad for him!
February 6th, 2014. They discussed our little man in their meeting. They really want him to gain more weight to be able to do any kind of surgery on him and since he is fairly "stable" thats the plan. And they also want to hear what the specialist thinks out in Minnesota, so we wait....

I could stare at him for hours! He looks right through you and I swear he knows what your thinking! He loves to interact with us! I love looking into my babies eyes! I seriously can't put him down! If I could I would never let him out of my arms! Lets be honest, he is probably the most spoiled child yet :)
He loves sitting up in his little boppy pillow. It puts him in the perfect position. He loves his binki and loves to hold onto his new little monkey binki!

We have been up here for over a week now.  He weighs in at albs 5oz today. My mom talked us into going home to spend some time with the girls tonight. As much as I don't want to leave my little boy, I know we need to spend some time with the girls too. They miss us and need some mommy and daddy time as well. So this thursday night we headed home for the night and Mimi stayed with our little man.

Feb 7, 2014 as we were dropping the girls off with Britt and Josh my mom called and told us that Hudson has taken a turn for the worse. What a sickening call. We couldn't drive fast enough to the hospital. She said his breathing was getting harder and that they were taking him to the Cardiac ICU. Walking into the Cardiac ICU and seeing him on the High flow NC just broke my heart! He needs to get better, he has to get better! We are terrified of what could happen. Chad keeps telling me that we will be ok and that no matter the outcome we will be ok. But I can't say the words out loud that he may not survive. I just can't, I feel like if I say that that I am not fighting for him. I am fighting with every beat of my heart for this little man!
They put him on a Precedex drip they want to sedate him so they can bring his heart rate down so that his little heart won't work as hard to pump the blood to his body.
When I look back on these pictures I can hardly breathe! This was the last time we were able to hold our precious Hudson. I think I knew deep in my heart that something was really wrong and my life was about to change drastically. It's a friday evening and my heart is breaking holding my little boy. I couldn't stop crying! I think my panic is starting to kick in. I have NO idea what to expect or what is in store for this little guy. The surgeons came and talked to us and said they would tentatively put him on the surgery schedule Monday morning, but they still don't know if there is much they can do for him. They still haven't heard from the Mayo clinic and Im starting to panic because we are going into the weekend and I want to know beyond a shadow of a doubt that we have all the information the surgeons and doctors may need. So I called in a favor from one of the Neo's down at UVRMC. Dr. Minton knows everyone and I was praying that he would know someone out at the mayo clinic. I'm praying hard!





Huddy Buddy

Since we spend all our time inside to keep this little guy healthy, this is pretty much all we do....SNUGGLE! And I wouldn't have it any other way! You could say he is spoiled! Between me and his sissy's and everyone else he has wrapped around his tiny fingers he gets spoiled all day and all night! He even has his Mimi wrapped around her fingers enough that she takes him some nights for me.  He is a little fussy at night. But I can't blame him, between needing to eat every 3 hours and his reflux the poor kiddo takes a while to settle down after eating. 
 Think his sissy's like him? OBSESSED! These two want to hold him constantly! The poor kid gets tossed around like a rag doll between these two! But I think he likes his sissy time! Bentley is so good with him and Reagy loves to sing to him! They both want to feed him, now if only they wanted to change his diaper as much as they want to hold him. Actually, I think Reagan would change his bum if I let her! 
 Most days we all stay in our jammies. That's how we do things right now! 
 This is one of my favorite pics! His chubba cheeks and his beautiful soft curly hair! I can't get enough of his hair! I am constantly running my fingers through it! It is so soft and silky, and long for being a baby! And don't let those cheeks fool you, he is still SO tiny! These are preemie clothes, the newborn drown him still. 
 These eyes! They say so much to you! I seriously feel like he can stare right through you! Love his beautiful eyes :)
 This guy LOVES his tubby! And yes, I put him in the tub with me. This is OUR time together. No one else around and we can just be together. I cherish this time so much. He will have no idea how much I love this time together! 
Love the budda belly! 
 Oh boy, this is what happens when someone doesn't get his way! But its still so cute! I constantly tell him that I get to kiss him whenever I want! This is usually the face he gives me, but it doesn't stop me from laying the kisses on his sweet face! 

Oh we love having a boy in the house! No matter what kind of struggles this Noonan syndrome may bring, this little guys is our pride and joy! There is nothing this kiddo can't do, I'm just sure of it! He is my HERO and I know he will do BIG things in his life!