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.

***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.}

Tuesday started my next round of doctors' appointments. Yay :/

I went to the ROC on Tuesday and everything seemed to go well. They did a biophysical sonogram measuring all sorts of interesting things. The amount of amnio fluid and how many breaths Baby Brother took and some other things. The highest score possible is a 10 out of 10. This is the same sonogram they did with Christian when they made the decision to go ahead and try to induce me. Christian scored a whopping 4 out of 10 so the doctors said get him out now! and that's what they did.

During the scan the tech asked about Baby Brother's heart. She didn't understand Hypoplastic Left Heart Syndrome and what it entailed. So I told her it meant the left side of his heart wasn't pumping correctly - if at all - and she responded with "so that's why it looks like it's sitting dormant". Yeah, that's why. She did see some blood flow through the left side and I explained we've been told the left size squeezes more as a spasm to the right side doing its job. I'm not trying to be a jerk here but if they know you've got something that's going to show up on the sonogram shouldn't they assign a tech that understands the condition? Had she not asked me she would have run to the doctor to say she found a problem with his heart. I know that an ultrasound tech can't possibly know every congenital heart defect out there but when you work in a high risk obstetrics office you should probably make an effort to know them. Just my humble opinion.

She finished the sonogram. Told me Baby Brother was weighing in at 4 pounds 9 ounces and was in the 60the percentile for size. Good news because as I've been saying the bigger the better. Then she went to get the doctor. Doctor came in, looked at the scans and said things were looking pretty good. So far Baby Brother was scoring an 8 out 8. I just needed to do a 10 minute non-stress test to get the final two points. They moved me to another room and put me on the machine with bands wrapped around my belly. They were measuring heart rate and if I was having contractions.

Contractions are a funny thing for me. Let me go on record right here and now to say I have NEVER had a contraction. Never. What I did have in the beginning stages of labor with Christian is what I would call menstrual type cramps but nothing more than that. My labor with Christian was induced with medicine and after 12 hours I had dilated a centimeter (or less really) and with Georgia I was a scheduled C-Section. She was delivered 3 days before her due date. Not a week! 3 days! And 3 days before my due date I hadn't started dilating at all. So I try to explain to these doctors my babies are far too happy inside. They do not want to come out. Contractions are non-exsistent.

Obviously the monitor said I was having no contractions and his heart rate was great so Baby Brother scored 10 out of 10. Yay! He doesn't get evicted just yet. He can stay to grow a little longer. And lucky for me I get to go back every stinkin week until Baby Brother is pulled from my belly. Every week. Across town. Every. Stinkin. Week. I'm not bitter.

You probably don't know this but Tarzan is my favorite Disney movie. Don't get me wrong ~ The Little Mermaid will always be my favorite princess movie. And even more so now that I have Georgia and it's hers too! But Tarzan will always speak to my heart.

For a long time I was a single mother to my son Christian. 8 years of his life we were on our own and having a great time. Tarzan is a story about a mom and her son. The love a mother has for her son (even if he didn't come from her womb) and the love a son has for his mother. I remember taking Christian to the movies to see it and listening to the words of the songs and how every second of that movie really spoke to me.

Fast forward years later and because of my daughter, Georgia, we are constantly listening to Disney songs on Pandora and wouldn't you know it Tarzan songs come on. Pregnant or not these songs always make me cry. Not with sadness but tears of joy. Again, they just speak to me in a way other songs haven't. As I've listened to one of the songs it has become even more meaningful. Here are some of the words:

For one so small you seem so strong
My arms will hold you keep you safe and warm
This bond between us can't be broken
I will be here don't you cry

Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

When destiny calls you, you must be strong
I may not be with you but you've got to hold on
They'll see in time
We'll show them together

Cause you'll be in my heart

{I can't even type it because I'm blubbering like a baby}

One thing I keep saying is he is so strong. He kicks like no other baby that has been in my belly. I hope that's a sign of his spirit when he enters this world. I need him to be strong but I will do my part to keep him as safe as possible.

Obviously the part about not being with you but you've got to hang on is where I lose it. I think our biggest fear is that when we leave for the night or even to grab a quick bite to eat is when something will happen. I pray his fighting spirit keeps him with us for a very very long time.

I had my OB appointment with Dr. Glas on Friday, November 8th. For those keeping track that makes Monday, Tuesday, Thursday and Friday with appointments. All in one week.

I really wanted to hate Dr. Glas. Not because she is horrible or mean or anything else but because she represents what is so scary. I had to switch because of little guy's issues and she is the new delivering doctor. Luckily for me, Baby Brother and Jason is wonderful and delightful. Soft spoken. Not something I'm used to that's for sure.

I explained what Dr. Lacey had said about taking Baby Brother straight to the NICU and she reminded me there's always hope. Not to give up hope. And that sometimes these babies surprise us. She also reassured me that even if he needs to go straight to the NICU, as long as it doesn't endanger him, she will make sure I get a kiss in. She also said she will talk to one of the nurses to see if they will act as photographer for me. There will be one nurse in there that does her job before they cut me so she would be a good candidate for the position. She also let me know she's fairly confident, given Baby Brother's situation, everyone will be on high alert and more than willing to do even more than they normally do for our family. I do love a doctor that wants to help me remain optimistic.

She saw my bruise and asked what the heck happened to me. I told her it was that crazy lab she sent me to and told her how the guy practically beat up my arm! "Oh that reminds me" she said. "I got your results from the glucose test. I think it was normal." I said you think? And she said she would check to make sure but that she had several come in that week all abnormal so my name stood out since it was normal. Usually the other way around. She left the room and came back in with a smile and said "You're normal" and I said "I've never been accused of being normal!" and she laughed and said she can't speak for me personally but my glucose test was normal. Thanks for clarifying doctor! And thank you for the positive outlook on things. It's nice to feel like someone is in my corner.

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.

Tuesday, November 5th, was my next appointment with the ROC. I go walking in with my huge bruise on my arm like I own the place. For real I have to be there every 2 weeks so they better get to know me as if I do own the place!

I was called back and they went straight to scanning Baby Brother.

They didn't realize I was seeing the Pediatric Cardiologist every two weeks as well so they had scheduled me for a heart measurement scan.

After the scan the tech went to get the doctor and, as per usual, I meet a new ROC doctor. Dr. Villano. Like the beach. She walks in and says "We've never met but I know your scans well". I felt a little famous. But not in the fun way. She said she was invited to the cardiologist board meeting they had the Thursday before and my scans were introduced at the meeting. She had also spoken with my cardiologist, Dr. Lacey, about me and Baby Brother at great length. Great.... It kinda made me cringe. Like I'm the bad kid in class the teachers need to "discuss" before they rotate classes.

Dr. Villano said his heart was now measuring at 50% of his chest size but she wasn't concerned with that. It didn't worry her. So I explained the previous conversation with Dr. Lacey and how concerned Dr. Lacey was when his heart measured 40% so why is a 10% growth in 2 weeks not of a concern now? She said with what she was seeing everything looked ok. Obviously he still has HLHS but outside of that she wasn't worried about anything. Even now as I type it makes my head spin. How can she sit there and tell me, even after speaking with Dr. Lacey about all her concerns, that she isn't worried about the size of his heart? Obviously it caused me a great deal of stress and made me wonder if these doctors actually know what the heck they are talking about.

She let me know I would be back in 2 weeks where they would take all Baby Brother's measurements and make sure he is growing as he should be in all areas and that after that appointment my appointments would then go to weekly appointments. Weekly! For 8 weeks! Well, more like 6 since I'll have 7 weeks left and they are going to schedule my C-Section for the week before my due date.

What a fun appointment that was! And totally unproductive. Talk about more questions than answers.

Did I mention I failed my one hour blood glucose test? So, yeah, I got to go and take the three hour test. And can I tell you how much fun that was??

I walk in already starving. My body has this way of knowing when I've left the house. I'm fine and then I leave and I'm all the sudden starving. So I started eating before I leave the house. Making sure to take 2 minutes to grab something because anything is better than a drive through. But guess what. I'm full leaving my driveway and then I'm STARVING as I'm driving down the road. But if I were to stay home all day my body would be fine having a quick bowl of cereal and nothing else. Weird!

Ok, so I'm already starving and it's getting later in the morning and the woman said "Are you prepared to be here for 3 hours?" Let me see.... I walk in with my phone and my iPad so yeah, I think I'm good. She actually looked at me and said "you did know you were going to have to be here for 3 hours, right?" Seriously? I walked in and said I'm here for an appointment for the 3 hour glucose test. So, no. I didn't realize that a 3 hour test meant 3 hours. Maybe I'm a little sensitive days.... haha

So I sit and wait and this guy comes out and says my name but says it like Case-E. Well my name is Cassie as in C-ASS-ie. And all he said was the first name so I asked Cassie? And he looked at me and looked at the form and looked at me again and I said "you said Casey so I just want to make sure you meant Cassie" and again he looked stumped. So I said can you spell the first name of the person you are calling please? and he said C-A-S-S-I-E and I smiled and said "great! That's me!" This isn't annoying, by the way, I'm actually quite used to it. For those that know me in real life you know my sister is Casey and for those who don't know me in real life now that you know my sister is Casey you will never be able to pronounce my name right again. You will always say "Casey, I mean Cassie". And when you talk about my sister you will say the same thing just reversed. Happens every time. I answer to Casey most times, which is why I answered the guy in the first place. I just want to make sure there wasn't a Casey in the waiting room too. Cautious. That's me!

So he takes my blood and then gives me the sugar drink which was fruit punch flavored and it was delicious .(The problem with blogging is you can't pick up on someone's sarcasm. Is there an emoticon for sarcasm? If so I need it!) I had to drink it all in 5 minutes. I may have even texted Case-E and said something like "takes me back to my days in Provo. Chugging Kool-aid". For non-Mormons that's actually pretty funny :-) So I chugalug this yum-o drink and am instructed to go back to the waiting room to wait out my hour. Wait! What? The waiting room? You don't have a neat little room tucked away in the back for us all dayers to go sit in with a tv and recliner? Seriously I have to do this test before and the place I went had all that! Nope. He was serious. I had to sit in the waiting room. In the waiting room they didn't even have magazines available. Good thing I had the trusty iPad. I just wish I had a jacket. That places was freakin freezin Mr. Bigglesworth!

An hour comes and goes and the guy finally comes out and calls my name and then proceeds to reprimand me for not noticing an hour had gone by. Apparently they get so busy that it's the patient's responsibility to remind them when it's time. So we just added 30 minutes to this already too long process. So he goes to take my blood again and it hurts. I'm a baby and hate my blood being drawn but I usually reserve my baby side for people I know. In front of strangers I try to be brave. But this guy HURT! Seriously hurt! He blamed my vein. Said it moved on him. I'm no phlebotomist but I've had blood drawn many times before and I've never had someone say my vein moved. I'm sure it could happen but it just sounded like an excuse when it should have been an apology. So he draws blood and then puts the cotton and tape on it and scoots me back out to the waiting room. This time I set my alarm and when the alarm went off I was back in his room!

The third draw, at hour two, he ripped off the tape and drew blood and again it hurt. By this time I'm cursing the guy under my breath. And then at the fourth draw, hour three finally!, he rips off the tape again and hurts me again with the blood draw. With all the tape ripping I then had a rash along with the sore spot he kept drawing blood from.

Here we are a week and a day later and I still have a bruise where he drew my blood. And some remnants of tape if you must know.

I forgot the best part! (Insert sarcastic emoticon here) A girl came in. My age, maybe a little younger. She was there for her ONE hour blood glucose test. Her OB sent her there for the test because they didn't do it in the office. They called her up and asked her if she was ready to spend an hour there. She actually asked them if she could leave after drinking the Provo juice to go get something to eat because she was so hungry. The front desk girl said "no!" and explained she had to be there for an hour. She came back into the waiting room and did nothing but complain for 20 minutes about how hungry she was and she would NOT be able to sit through an hour test and not being able to eat anything. "How do you expect a pregnant woman to go without food for an hour?!?!" (she is the reason they ask if you realize you have to be there x amount of hours. I get it now!) Is. She. Kidding. Me? She finally decided she wasn't waiting and she left with her girlfriend. Yes, girlfriend. And not a moment too soon because I was quite literally about to walk over to her and rip her face off!