Friday (two days after my appointment with Dr. Huhta) found me at Fetal Clinic at Wolfson's. Fetal Clinic is where I was to go in and tour the NICU, PICU and meet the surgeons who will be performing the HLHS series of surgeries. I got to the hospital at 8 am and was scanned by an ultrasound tech. Dr. Lacey isn't in on Fridays so I had to wait until Monday for her to call me with the results of the scan. After the scan Dr. Ettedgui came in to speak to me. He is the doctor from the cath lab that will be performing the atrial septostomy. I took lots of notes and when we were done I realized I had three pages of negativity.

"The collective experience suggests the outcome is dismal"

"We don't want pain and discomfort for your baby if the procedures will prove to be fruitless"

"Babies will declare themselves non-survivors and that's when we administer comfort measures only"

"IF baby is stable for a few hours then the atrial septostomy is not unrealistic"

"Odds are stacked against you and your baby"

"There are all sorts of potential for bad outcomes"

"You have a very very high risk baby"

There was more. It was painful to sit through. Not because he was talking about the difficulties Baby Brother would have but because I knew from two days ago that there are people out there who want to be optimistic about our son's options and his chances for survival. To have to listen to someone write your son off is just emotionally painful. I asked him about the procedure itself and what to expect from that and he explained how they do the septostomy and again, followed it up with all the danger and dismal outcomes. Jason actually asked me if I only wrote down the negative things this guy was saying and I laughed and said "No, I wrote down EVERYTHING he said". It was just bad news to more bad news. After that Dr. Kreiger came in to speak with me.

Dr. Kreiger is from PedsCare. Don't know what that is? Join the club! I didn't know either. Then she explained. PedsCare oversees the palliative care option. She is basically the "do nothing" overseer. So she took me to her office and gave me all sorts of information on comfort care measures. Even a birthplan that was all typed out with boxes to check for what we would want to do if this or that happened. I sat there almost in shock that I was meeting with her. Jason and I have been very adamant in our desire to do something and that doing nothing was not an option for us. So I sat, smiled and waited for her to finish. Once she was done I thanked her for her time and left. I went back to the Cardiology office and they called the Chaplain. The hospital chaplain does all the hospital tours. I guess they want you to be comfortable with him in case you need him.

Chaplain Fred came in and took me on the tour. He showed me the NICU and the PICU and tried to answer questions. He is obviously very loved at the hospital as everyone we passed either smiled very warmly or they said hello or they filled him in on whatever was going on. He seemed to know everyone and everyone knew him and it was enjoyable watching him in his element. Of all the people I met that day he was the most positive and sincere. He introduced me to another mother whose baby is a cardiac patient. She said her baby was diagnosed after delivery and she was grateful she didn't have to spend her pregnancy worried about him and what was going to happen. I can totally see her point. BUT if I didn't know ahead of time Baby Brother would surely die. So I guess it's really just preference. She was nice and praised the doctors at Wolfson's but that's probably because she didn't have to deal with them ahead of time! Sorry, I'm sure they are fantastic doctors. They just aren't prepared for our baby and what he wants to throw at them. So we were done there and Chaplain Fred told me I was free to go. I was confused as I hadn't met the surgeons yet so he took me back to the cardiology office to see what was going on.

Back in the cardiology office the secretary said I was free to go and I asked her about meeting the surgeons. The whole point of fetal clinic for me was to meet these guys, ask them my questions and try to see where they stand with things. The secretary asked the head tech if she knew why my meeting with the surgeons was cancelled and she said "oh yes". She said Dr. Lacey and the surgeons felt it would be better if they met with me after baby had the atrial septostomy and was stabilized. They felt the type of procedure may change after that so it's best not to confuse me with telling me one thing and then having to come back and tell me something different later on. I seriously could not believe what I was hearing. Knowing I wouldn't get anything else from these two, since they aren't doctors, I just smiled and left. As soon as I was in the parking garage I called Jason and I was ticked!

I said "Even though they didn't use these words what they basically just said to me was 'we don't think your Baby Brother is going to live past the cath lab so we aren't going to waste our time meeting with you'." Jason agreed with me. We were both livid. I don't care if the procedure may change. At least give me 2 minutes of your time to meet you before I consent to you cutting my baby's chest open and doing surgery on his heart! Is that too much to ask??

Up until this point Jason and I had been talking about delivering in St. Petersburg and what that means for our family. It isn't a decision we can take lightly. Needless to say this experience was definitely going in the cons list for Wolfson's. Here it is 10 days later and I am still upset by it!

Then I started getting phone calls from 727 area code numbers. All Children's Hospital has already made me appointments with a delivering doctor and to tour the facility.

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!

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.

***WARNING*** THIS IS A LONG POST WITH SOME VERY UNCOMFORTABLE CONTENT

Thursday started out a normal Thursday. I went to class and after school I received a phone call. It was Samantha in Dr. Lacey's office. She wanted to remind me of my appointment at 1 (the appointment has always been scheduled through Wolfson's and therefore the automated system calls me a couple of days before and I have to press whatever number to confirm. Dr. Lacey's office has NEVER called to confirm the appointment.) and to make sure my husband will be with me. The last two appointments my mother  and mother in law had attended with me and my father was planning on attending Thursday's appointment. So I said "well he wasn't planning on it" and Samantha said Dr. Lacey was specifically requesting he be there because they had quite a bit information to go over with the both of us. I said I would call my husband and try to get him there.

I called Jason at work and of all the days this was the one day he had tons of work to do. We were both hoping this was more of a "hey, we're getting close to delivery so we wanted to kinda go over things" but at the same time we have Fetal Clinic scheduled for December 6th to go over those things. He said he would make the time because if she's asking for him to be there it was obviously important. I called back just because I was curious and asked if the information was about delivery or about the diagnosis. I was informed it was about both. Great ~ Now I've got the next several hours to worry about what on earth the doctor could tell us. What could have changed between two weeks ago and now? and how would Dr. Lacey even know since she hasn't seen me in those two weeks?

I got to the appointment first. The agreement was I would text Jason once they were about 20 minutes from being done with the scan. They can take upwards of an hour so what was the point in making him sit through that? He was about 15 minutes away so that would give him time to get there before the doctor came in. When I got to Wolfson's to check in the woman said "oh, they just called asking if you were here yet". Really? I got there 5 minutes BEFORE my appointment. This anxiety to see me was making me even more anxious! Needless to say I wasn't sitting for very long with the Cable lady came and got me. (her last name is cable...) She did the scan, I texted Jason, Dr. Lacey came in for a couple more views, Jason got there and we sat down to hear the news.

Forgive me for not having all the information from that appointment but there was a point where I couldn't breathe, much less write.

Dr. Lacey starts by telling us she has been in several meetings the last two weeks. (remember, we famous. Now we're about to become infamous!) She has met with her Cardiologist team, the surgical team, the high risk team, the this team, the that team.. they all have the same opinion. Baby Brother is not well. They have been watching his atrial septum deteriorate over the last couple of scans and just as she expected, it is even worse with this scan. I've said before his atrial septum must be open and floppy. His has thickened and become restricted. At the last appointment she explained the need for an atrial septostomy. This hasn't changed. The difference is now it's even more dangerous. There is a number grading system for the seriousness of the restriction of his atrial septum. They take his scans and the doppler from those scans and they measure length between one output and the other and come up with this grade. 5 or greater is a mild restriction. 5 or less is moderate to severe restriction. (I'm still curious what 5 actually means...) So Baby Brother's grade was 4. This indicates moderate to severe but Dr. Lacey is confident his restriction is not moderate. At the last appointment he presented with a mild case but the appointment two weeks before that he was still open and floppy so you can see the deterioration in his condition. {Side note ~ I'm sweating just typing all this out. Takes me back to being at the appointment where my face went flush, there was ringing in my hears and it sounded like the Charlie Brown teacher trying to talk to us} This situation is putting increased pressure on the lungs and pulmonary veins in the heart.

Extraordinarily high risk. That is the description she used over and over again. She has downgraded his survival chances. He was given 80% originally. Now she said it's "50/50 and it may not be that good".

We now have two options

Option 1:

Planned C-Section to be performed in the Wolfson's Heart Cath Lab. This has NEVER been done before at Wolfson's. Ever. Jason asked if they would name the procedure after me. Dr. Lacey laughed and said "maybe the room".

Option 2:

Do nothing and enjoy what little time we may have with him holding him, loving him, kissing him, taking pictures with him and then letting him go.

{sorry ~ will go into greater detail of these options in different posts as this is causing me too much pain right now. And there is so much information.}

My mom went with me to my pediatric cardiologist appointment this time. It was nice to have her there. I'm glad she got to go and talk to the doctor and try to understand a little bit more what is going on. It also turned out to be wonderful to have her there for support.

In case you were wondering what the questions and answers were I am posting them. More for myself in case I lose my notebook but here they are nonetheless.

How is his growth? the ROC says he's 58% for weight. A good size.

What about his aorta? Has it grown? I didn't measure his aorta yet today. It was 2.6 mm in diameter last visit. I will be measuring it later. We don't expect it to grow as HLHS babies' aortas don't typically grow since their growth is dependent on the left ventricle also growing.

Is the size of his aorta important? I was under the impression it was since you measured it last time but my husband seemed to think it wasn't as important as other things. The aorta size is a very big deal. When doing the surgeries we go in through the aorta so the larger it is the better the chances. Basically, Aorta size equals mortality rate. We are excited to have anything greater than 2 mm. Your baby has 2.6 mm. That will serve him well for surgery.

How often does Wolfson's perform HLHS surgery? I can find that out.

How often does the surgeon perform HLHS surgeries? Our cardiology team performs approx. 12-15 HLHS surgeries a year.

How often does the surgeon team perform heart surgeries, not specifically HLHS, yearly? At Wolfson's we perform approx. 300 plus heart surgeries a year. In Gainesville we perform more than that. So it is safe to say over 600-700 heart surgeries a year on babies/children.

How much time will we have with Baby Brother before they whisk him off to the NICU? We leave that up to the NICU team who will be present at the delivery. They are constantly observing him for any signs of distress. If everything seems ok and he isn't distressing then generally 10-15 minutes.

How long before he can have visitors in the NICU? Usually the NICU team needs about an hour to get him prepared and the IV set up. Then Dad gets priority. After Dad, grandparents. They allow 2 people at his bedside. They are generally fairly lenient about who you bring in as long as Dad or a grandparent is one of the people with the visitor.

Is his atrial septum in tact or open? His atrial septum is open.

That's good news, right? Yes! This is very good news. Otherwise we would have to go in with a balloon and open it. Hopefully it will stay open.

Because we are optimistic people and KNOW he will be coming home, will he need a special carseat or any special equipment once he is home? No. He won't be released to come home until he is off monitors and by then his wounds are healed and there are no restrictions.

If I have him on Wednesday can we do surgery that Friday? No. First of all we do surgeries on Wednesdays. (Jason and I both remember her saying they did surgeries on Fridays. Oh well..) Second he cannot have surgery until he is at least 5-7 days old. Since you are a scheduled C-Section it makes the scheduling of everything else a little easier. We recommend you have him on either Monday or Tuesday and he will be scheduled for surgery the Wednesday of the next week.

It had been 4 weeks since my last round of appointments with ROC and the Pediatric Cardiologist so that meant it was time to make the next rounds. I looked forward to them because the last time around so much information was flying around I couldn't process anything. This time I was armed with questions! I had gotten some really great advice from other Heart Moms on questions to ask to help me understand a little better what was going on. Plus I remembered some things from the last appointment that I wanted to expand on. I remembered Dr. Lacey (the per cardio) saying we wanted a big baby so I really wanted to make sure she was seeing growth. I remember her saying he had a large aorta for a baby with HLHS so I wanted to make sure that was still growing. Heck, I'd take a millimeter growth because every mm counts! I wanted to know about heart surgeries performed on babies at Wolfson's and if his atrial septum was intact. Seriously, I need these answers! And who in their right mind would have ever guess I would even know what an atrial septum was? Not this girl!