The first Sunday of every month is Fast and Testimony meeting at our church. We fast for two meals and give the money we would have used for those meals to the welfare program at our church. And our church service is dedicated to those who want to bear testimony to the truthfulness of the Gospel. This particular Sunday, first Sunday in December, the congregation was asked to fast and pray for Baby Brother. For those willing and able, make Baby Brother the focus of your fast and your prayers. Then my sister posted on Facebook about the fast so we had people all over the country fasting and praying for Baby Brother.

{You can read more about our faith and beliefs here www.mormon.org }

Sunday afternoon my friend Pam, her husband Rick and her father Carl Luke came over to talk about the baby and to give the baby a priesthood blessing.

I guess I should stop here and tell you about a phone call with my cousin's wife I had on Tuesday after getting the phone call from Dr. Lacey. Jennifer, who also has a Hypoplastic Left Heart son, reminded me of the power of prayer and to prayer for angels to be in the delivery room. She said I have a brother, my baby brother who passed away at the age of 10 weeks from SIDS, on the other side who is waiting for me to summon him so he can serve me. She said he is just waiting to help and if I asked would guide his nephew's spirit from one world to this one. That he is just desperate for the opportunity to serve me.

OK, So Brother Luke and Rick gave me a blessing. In this blessing Bro. Luke said a lot of things but something I picked up on immediately was him summoning angels to the delivery room and the surgical room. He asked for those angels to guide the hands of the cardiologists so our son has the best chance. He never said my son would be healed but he did say that through our faith miracles could happen. It was powerful prayer and left me feeling positive in a way I hadn't allowed myself to feel in months.

After they left Jason and I talked about it and the thing Jason picked up on was also the asking of angels to attend to us, the baby and the surgeons. And I have faith that all the things he spoke of in this blessing could and would happen. I have faith to move mountains. Especially where my little man is concerned. But, and I know there shouldn't be a but, we have received such horrible news for so long my faith in good news was wavering. But I had to remain hopeful and faithful!

The Wednesday before Thanksgiving started out a normal Wednesday. Wednesday morning routines were completed and the kids and I were home.

Wednesday afternoon I sat in front of the computer and started to google. I knew there was a children's hospital in St. Petersburg but that was all I knew. So I googled "childrens hospital st. petersburg" and the first thing that popped up was All Children's Hospital. At this point I can promise you I had no control over my fingers. They were being led in a way I had never thought possible. Next thing I know the number had been dialed and a woman answered. I asked if they had a pediatric cardiologist and she said "of course, I'll transfer you" and then Linda answered the phone. The first thing I said was "Linda I have no idea why I'm calling you but here is my situation" and I proceeded to tell her everything. I started from the original diagnosis to the options to the phone call and change in plans." Her response "you are calling me because you want help for your son" and I cried. I had been crying the whole time but was trying to keep it together. But here I was crying again. I barely squeaked out a "yes" and she told me she would transfer me to Pam in doctor something's office (I couldn't remember or understand through all my tears). I was on hold for a little bit when Linda came back and said Pam was in transient from one office to the other and asked me to leave a message on her voicemail. "Tell her your the mom I just spoke to her about and she will call you back when she gets into the office" she said. Then she transferred me. I left a very long voicemail and wasn't sure she would be able to understand me through the tears but I told her what I had told Linda. As it was the Wednesday before Thanksgiving I knew for sure I wouldn't hear from her until Monday. I laid on my couch and attempted a nap. About 45 minutes into my nap my mom called and I talked to her and in the middle of talking to her my other line beeped in with a 727 area code. "Mom I gotta go, this is the doctor's office"

"Hi, is this Cassie Clarkson?"
"Yes, this is Cassie"
"Hi Cassie, this is Pam in Dr. Huhta's office. I have Dr. Huhta on the line and am going to connect him in"
"OK, thanks"
"Hi, Cassie, this is Dr. Huhta, tell me what's going on with your son"

First of all I couldn't believe I was talking to the doctor. I'm not his patient and neither is my son but here he is taking the time out of his day to talk to me about all of this.

So I proceed to tell him the entire story. Of course leaving out the emotional side of it since he's a doctor and time is precious and I wanted to get to the medical point. So once I paused for a breath he asked "OK, so what is it you're looking for from me? Do you want me to look at their scans? Do you want a second opinion? Do you want me to call Dr. Lacey and ask her why the change in treatment course?" and I sat for a minute before telling him I wanted a second opinion. He asked what kind of second opinion. He can look at the scans and see if he sees something different or I can go to Tampa/St. Pete so he can look at me. I asked what he preferred and he said he prefers me going to Tampa so he can look at me with a fresh set of eyes. He won't know exactly what Dr. Lacey saw and so we will have a true second opinion. I agreed and said I would go to Tampa.

"Great! Pam actually transferred you to my cell so I want you to call her back and tell her I want to see you at my next available appointment. But before I let you go I want you take down these numbers. Got a pen?"
"yes"
"OK, 727 - (telephone number), that's my cell phone. You call me anytime! 727 - (another number), that's Pam's cell phone. If you can't get me you can call her. She knows how to reach me all the time. And you have the office number. I will see you soon"
"Thank you so much! I will call Pam right now!"

Seriously, what doctor gives you his cell phone number? Especially when you aren't even his patient???

I called Pam back and told her what he said and Wednesday, December 4th at 1 was the next available. A week away. I'll take it! She then asked me if someone referred me or how was it I came to call their office. I said I was embarrassed to admit it but I googled childrens hospital st pete and she laughed. Then said:

"That is the luckiest google search you will have ever done!"

Then she, in her own way, dared me to google the doctor's name. She said he is world renowned for his work with atrial septostomies and quite literally wrote the book on them.

After hanging up with her I accepted the challenge of googling him and found his resume online. All 49 pages of it! He has trained everywhere. He even trained in London at the children's hospital there which Jason was thoroughly impressed with. Turns out the hospital in England is the equivalent to St. Jude's or Johns Hopkins here.

There was a warning though. Dr. Huhta said to be prepared. He may find they are right on track, or that it isn't as bad as they say, or things are worse off and Wolfson's is being polite to save my feelings and emotions. Well, if this is Wolfson's way of saving my feelings or emotions I'm scared to ask what they would tell me if they didn't care about them. :/

I went to bed that night with hope. Hope that had been taken away from me at Wolfson's. I know this baby better than anyone and I know he is a fighter and I know the power of prayer. Yes, a smidgen of hope was back. Even if he told me things were as Dr. Lacey has said at least I would have the second opinion that I didn't have a week ago.

Tuesday before Thanksgiving Jason and I were still reeling from the news we received about the deteriorating situation Baby Brother was in. He was getting worse and there was nothing we could do about it.

On my way to the ROC I received a phone call from Dr. Lacey. She wanted to update me on the current plan of care. Turns out she had more meetings with her colleagues and even had a teleconference with the head surgeon and they all agreed on the following changes:

Instead of delivering in the cath lab we were now going to deliver in the normal surgical room. Baby Brother would then be taken to the NICU to allow him to stabilize. IF he stabilizes they will then take him to the cath lab for the atrial septostomy. If he does not stabilize they will bring him back to us for end of life care. They will no longer offer bypass as it is not an "ethical option" for our son at this point. (YES! She said ethical!)

I thanked her for the call and called Jason. We both felt like she and the other cardiologists were forcing us into the do nothing option.

I went to my appointment at the ROC and Baby Brother tested 10 out of 10 again on his biophysical sonogram and was giving them all the great information they needed. He was breathing and moving and heart rate looked great. He was a superstar!

On the way home from the appointment I called Dr. Lacey and explained our feelings on this matter. She understood but reassured me they will do everything in their power, short of bypass, to stabilize our boy and to make sure he is able to get in for his atrial septostomy. She also said removing the option of bypass is probably a really good thing as babies who go on bypass that quickly after birth do not come off of it alive. She did mention in the conversation that some of her colleagues thought we should do nothing and I informed her those colleagues were welcome to walk off the team taking care of my son. Only the people who believed in him and his survival were welcome to stay on the team. And let's face it, if this baby is as bad off as they say and they are able to save him then there is most likely publishing or some other form of recognition ahead of them. It would benefit them to believe in Baby Brother the way Jason and I do!

I hung up the phone from the second call and started to panic. I've held out hope for our little guy but now what little bit of hope I had was trying to be taken from me. It was painful in a way I cannot explain.

Later that night as Jason and Georgia had just fallen asleep I knelt down beside my bed and I prayed. I prayed harder than I have ever prayed in my life. I begged for my son's life. I begged for Heavenly Father to take my heart and lungs to give my son life. I begged and pleaded. I thanked my Father in Heaven for all of my current blessings and literally named them one by one. I thanked him for allowing this sweet spirit to grow inside me. I thanked him for allowing me to get to know this little guy in a way no one else does. I thanked him for all my children and my supportive husband. And I pleaded to him to guide me. Show me what you would have me do for my son. Please! Guide me in the way only you are able. Help me save my son!

Friday I had my biweekly appointment with Dr. Glas. Have I mentioned before how much I really have come to love her?

Everything looks good for me. My blood pressure is great. No protein or sugar in my urine. Baby's heart rate is good. Then she asked how my appointment with Dr. Lacey went. Well there goes the good time we were having :/

I explained the appointment as best I could remember. I even had my notes with me but like I've said, I stopped writing at one point. I told her about the two options presented and she asked if Jason and I had made our choice. I looked at her, tears in my eyes, and said yes. We choose to fight. She nodded her head and closed her eyes and when she opened them she said:

"You are making the right choice"

She went on to tell me there is no wrong choice here. Jason and I know this baby more than anyone else and we are the only ones who can make a decision like that. We know what's best for him and for our family. She then went on to say if she was in my position she would make the exact same choice. Her being a medical doctor she can understand Dr. Lacey's views on things but that she would still make the same choice Jason and I made. Dr. Glas reaffirmed Dr. Lacey is a wonderful doctor and knows she will do everything in her power to be able to save this little boy but that she has to give us our options along with the pros and cons for both. Of course I understand that. It just felt really nice to have someone in the medical profession tell me we are making the right choice. To be clear and fair Dr. Lacey never told us we were making the wrong choice. As a matter of fact she left the room from our Thursday appointment saying she was going to start putting the teams together and would call me when the surgery date had been set so she probably already realized we were going with option 1. But it was nice to have someone say you're making the right choice.

Dr. Glas let me know whatever the date she will make herself available for us. This baby has so many people on his side wanting to help. It really is incredible.

There was so much more said in that room on that Thursday. Things I will never remember as long as I live and things that will never ever leave my memory as much as I may try. Jason was taking notes and asking great questions and I just sat there like a zombie. My whole world felt like it was crashing down on me and I couldn't retain any information.

Option 2:

Option 1:

Intervention ~ HEORIC MEASURES

(In other words not fully expected to work)

Planned C-Section in the Wolfson's Heart Cath Lab.

They are expecting Baby Brother's condition to be so deteriorated that they can't risk the time it would take to get him from the regular surgical room to the cath lab so delivery in the cath lab is ideal. There are two rooms in the cath lab so one would be set up as my delivery room and the other set up to immediately perform the atrial septostomy.

On hand will be the adult surgical team for me to include anesthesiology and my OB. Then there will be the Cardiologist team, NICU team and Echmo team for him. Lots of scheduling to do so delivery will most likely be moved up to December 27th or 30th. For those who may not know, like myself, the Echmo team is the bypass team. This is the bypass machine that keeps people alive when having open heart surgery or some other procedure that requires bypass.

As soon as Baby Brother is pulled from my belly they will rush him to his side of the cath lab to perform the surgery. There was a bit of debate between Jason and I as to what to call this procedure. I keep saying catheterization because they way they get in to do the atrial septostomy is through the groin in the same way a heart cath is done. Jason says it's surgery because, well, it is. I'm not denying it is a surgical procedure, just trying to differentiate the difference between going through the groin as opposed to actually opening his chest. (if that make sense to you)

They would try to perform the atrial septostomy immediately and this would hopefully work to open his atrial septum. The struggle is they think Baby Brother will be so sick that he will need to go on bypass. Why is this a problem? (Besides the obvious!) This is a problem because in a normal catheterization you go in through the groin, perform the procedure, come back out, put lots of pressure on the incision area until bleeding can cauterize. If he has to go on bypass then the problem comes with bleeding. A bypass machine is constantly pushing blood through it. The mechanisms are plastic. So the blood flows through plastic tubes, essentially. Because of this they have to use blood thinners in the blood to prevent the blood from cauterizing in the tubes. If they are using blood thinners in the blood then thinned blood is what is going into Baby Brother. Once they go to pull the needle (or whatever it is) out of his groin there will be no way to stop the bleeding and he will bleed out. If they can get the needle out and stop the bleeding then Baby Brother has to start fighting to get off that machine. They will only keep him on it for 2 weeks before we have to make some very hard decisions. The other problem with the bypass and thinned blood is the risk of bleeding on the brain.

I asked if it was possible, in a perfect world of course, for them to get the procedure done before Baby Brother would have to go on the bypass machine. She said Yes! Absolutely. But that would be a perfect scenario and so far your baby hasn't wanted to do anything perfect.

She said the first 48 hours are going to be crucial. That's when they would expect him to "crash and burn".

Once he comes off bypass (if he even goes on, I'm still praying!) and is making strides, then and only then will they determine if he is a good candidate for the Norwood procedure. That is the first procedure to mend the Hypoplastic Left Heart.

If we choose this option Dr. Lacey wants us to reconsider an amniocentesis to check for chromosomal abnormalities. She wants us to make as an informed decision as possible. To a layman she said let's see if there is anything else going on with this little guy because you may not want to fix a heart that's attached to a down syndrome baby. This is the part that has me MAD! She never specifically used a specific abnormality but I can read between the lines. Don't get me wrong she is a very nice lady and a wonderful cardiologist BUT I didn't have an amnio for a reason and the reason is I DON'T CARE! Jason and I agreed a long long time ago the risk of the amnio is too great. Especially since the results would not change a single thing. If this baby had Downs or any other something, you know like Hypoplastic Left Heart, we would still treat him like the gift from God that he is. He is a precious spirit that Heavenly Father thought Jason and I capable of handling and I will not play God! If HLHS doesn't scare me (even though it kinda does) then some other abnormality never will! I'm sorry, I'll step off my soap box. Bottom line is we have declined, yet again, an amnio. This is also the reason for determining if he will be a candidate for the Norwood. I suppose if he has something else wrong they will decline to operate on him. I'm not sure what makes one baby a good candidate and another not but they will operate on my son! If he can make it through the atrial septostomy under all that pressure then the Norwood will be a piece of cake.