What a difference a hospital makes.

Thursday morning, December 12th, my sister and her kids came to pick up Georgia and me and we once again started the trek down to the Tampa area. I had an appointment with the Maternal Fetal Medicine doctor who would be delivering Baby Brother. Kathy Arnold, the Perinatal Cardiology Nurse Coordinator, asked if I could be at the hospital a little early so she could give me the tour of the facility.

We were driving and our exit came up and we turned off the interstate to find ourselves staring at a beautiful hospital facility. At the top said "All Children's Hospital" and underneath that "Johns Hopkins Medicine". Yeah, did I forget to mention ACH is a Johns Hopkins Hospital?? We pulled into the Outpatient center and I went in to find Kathy. My sister took the kids to play at a nearby museum while I did my thing.

Kathy is a sweet woman. Probably a little younger than my parents. All smiles and ready to show me around. She showed me where I would be delivering. I couldn't tour the facility because they didn't have any open rooms but she showed me as much as she could. Then she took me to the Cardiovascular Intensive Care Unit. See, at ACH my son will not go to the NICU. Since he is a heart baby he will go straight to the CVICU. Wolfson's doesn't have a CVICU. Just a NICU and PICU. ACH has all the above. I met the nurse in charge of the CVICU and she was very nice and welcoming and showed me the kind of room Baby Brother would have. It has everything. It really is something.

We went to the milk depot. ACH has a department strictly devoted to breastmilk. They give me the bottles and the pump (I have my own so I can use mine but they will still give me the bottles and connections) and some barcode stickers and they take care of the rest. I pump, put the barcode on the bottle, take to them and they do the rest. They date it, rotate it appropriately, thaw it the right way. Dispense it when it's feeding time. The whole nine yards. A CVICU nurse orders the milk, the milk depot gets it prepared and lots of barcode scanning later (to make sure my son gets my milk and no one else's) my son is fed. Kathy also said as long as I'm breastfeeding the hospital will provide my meals. They take breastfeeding so seriously and want me to get the necessary nutrition that they will give me meals from the cafeteria for free as long as I'm pumping. Even if it's only an ounce a day.

Kathy then took me to the NICU just simply because that's where the transport bed is kept. She wanted me to see what Baby Brother will be transported in from the delivery room to the CVICU. Here's another glaring difference between Wolfson's and ACH. At Wolfson's the surgery rooms are positioned around the NICU so basically I would deliver and then they would take him through a door and they would be in the NICU. Once in the NICU they would try to stabilize him. Once he is stable Jason would be able to go and visit and take pictures and he would be able to take 1 person at a time in with him to see the baby. At ACH Baby Brother will be stabilized, if necessary, right in the room with me by the Stork team. That's what they call the transportation team. So they get to working on him right away. They have everything necessary on that bed to make sure he is ok. It looked like a mini hospital room on wheels. Once he is able to be transported Jason essentially becomes part of the Stork team and goes with them to the CVICU and will not be asked to leave until Baby Brother is discharged. Now, if something happens and they need to take Baby Brother out to have a cath or something along those lines then Jason will not be able to go into the cath lab. The CVICU allows 4 people at a time to go in. So Jason can take 3 people at a time in to see our little guy. Including his sister! Georgia can only stay in the room for 30 minutes at a time but she is allowed to go in and meet her baby brother. After all, she is the one that named him that.

After the hospital tour I went to the delivering doctor's office and everything went great there. The nurse sat me in a room for a consultation and after asking me every personal question in the world, sexual partners, illegal drug use, and more things my mind has purposely blocked, she surprised me by saying "Can I ask you a personal question?" Uhhhh, you've asked me about my sexual partners and whether I've done illegal street drugs so what on earth could be more personal??? But of course I said "sure" and she asked "Is it true the story I heard about the doctors in Jacksonville? Because if it is I am appalled. Really. I cannot imagine a doctor anywhere telling you there was little to no hope and so they're just going to let you hold your baby until he dies. It is APPALLING!" I couldn't help but get a little teary eyed and I whispered "yes, it's true". She then went on to tell me how very sorry she was I ever had to go through that and there is no "give up" with the doctors at ACH.

If I haven't said it before let me state for the record - I am so pleased to have found Dr. Huhta, his staff, All Children's Hospital and the doctors and staff I have referred to through Dr. Huhta's office. It has been a truly blessed experience. Even the surgeons wanted to try and work me into their schedule on Thursday but when I was finally done with my appointments Dr. Q was still in surgery. He told his staff to make sure I knew he would be visiting with me as soon as I was able to have a visitor. Very humbling that this Doctor would try so hard to take time out of his schedule to meet me.

Oh - I almost forgot. In speaking with the delivering doctor and nurse they let me know I am one of 6 HLHS mothers they are about to deliver. Actually she said they currently have 5 not including me so I make that 1 out of 6 ;) This is something they are used to and have seen on many occasions and it simply doesn't scare them. They only deliver at ACH. So that means in the next month or two ACH will have 6 new HLHS babies. And through my heart network I already know 2 or 3 babies currently in the CVICU with HLHS. This is as routine for them as anything else.

I am truly amazed at the true power of prayer, fasting, the priesthood and the love of a mother and father unwilling to accept defeat.

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.

I had the worst night's sleep on Tuesday night. I tossed and turned all night long. I guess I was more anxious about this appointment than I was willing to let on.

Since Jason was unable to take the day off from work my Daddy came with me to my appointment in Tampa. Dr. Huhta goes between All Children's Hospital in St. Petersburg and St. Joseph's Women's Hospital in Tampa. This day he was in Tampa so at 8:30 in the morning we started our 3 plus hour drive.

It was fun having Daddy drive me down. We talked and had biscuits from Hardees. Drank lots of water but didn't need to pee surprisingly enough. We made great time. So great in fact we had 2 hours to waste before the appointment. So we called Mom and she set us off on a mission. She needed Flutterbyes for my nieces for Christmas. We found a Toys R Us and even though they had them I knew most places had them cheaper. By almost 10 bucks! So we left there and found a BJs. They had them. We bought them. Mission accomplished! We wondered around for a little bit and then decided to get going.

We drove to the hospital and almost didn't make the appointment. We got lost and no one could tell us where we needed to go. It was frustrating. They couldn't even find Dr. Huhta in the directory. I was getting very annoyed. I didn't just drive all this way for nothing! Finally I called the St. Petersburg office and they told us where to go. As soon as we got back to where we started (the same place the first person told us we were in the wrong place) my dad went straight up to the girl and got on to her about wasting our time. She was apologetic and got us signed in immediately. It was then I realized just how nervous my dad was too. He is usually so easy going and level headed.

Lori the ultrasound tech came and got us and we got down to business. I'm a talker so I was making small talk and then the door opened. It was the infamous Dr. Huhta.

When we would go see Dr. Lacey the tech would perform the sonogram and when done would upload the pictures to Dr. Lacey where she sat in an office and reviewed them and made measurements and notes and then would come in and talk to us.

So, here's Dr. Huhta in the room with us looking over the shoulder of the tech asking questions, looking at the scan as it's happening and you can see his mind working. All the things Dr. Lacey does in her office with the help of pencils and paper and calculators Dr. Huhta is doing in his head. Then he asks "And the atrial septum?" So Lori scans over it again and, under her breath, says "looks OK to me". My dad and I both gasped! I begged my dad to just sit tight and we would talk about it when the sonogram was done. I just knew they were going to look at it from another angle and we would hear "Ahhh, now I see" or something to that affect. And just as soon as it started the sonogram was done. Dr. Huhta (who had introduced himself as soon as he walked in) told us he would meet us in the conference room as soon as I was cleaned up and ready.

The very short walk to the conference room, which was just simply around the corner from the sonogram room, seemed like the longest walk of my life. What was he going to tell me? We sat down at the round table and he began to talk. The room started to spin. I couldn't believe what I was hearing.

"No need for atrial intervention" (translation - he doesn't see a need for an atrial septostomy)

"Mild atrial restriction"

"I like to see a mild restriction in Hypoplastic Left Heart babies."

And the one that had me in tears.....

"3 out of 4 chance of seeing your son playing in Kindergarten!"

So because of one simple phone call my son's chances at life have gone from 10% (or worse) to 75%. I still can't believe what I heard.

Dr. Huhta explained our son has a mildly restrictive atrial septum. In his mind and experience it is not severally restrictive. He said he actually prefers a mild restriction because in an HLHS baby the atrial septum being completely open would allow blood to over flow the lungs once born and that is worse for our little guy. A mild restriction prevents a blood overflow into the lungs. Our baby was showing him all positive things. As positive as it can be for an HLHS baby.

He went on to explain they perform the Sano Modification to the Norwood procedure which gives babies a 15% mortality rate instead of 20% with the regular Norwood. Their mortality rates on the second and third procedures (the Biodirectional Glen and the Fontan) are in the single digits. More specifically 1-2%.

There were so many other things said in that meeting that I will have to have another post just to further explain everything. Bottom line was ~ Our baby has a chance! Prayers, fasting, Priesthood power! It all works. Miracles can happen! Our baby might just survive this.

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.

***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!

Since I will be delivering at Baptist I had to get a new doctor that delivers at Baptist. My lazy doctor only wants to deliver at Orange Park and St. Vincents. :/ I kid really. Dr. Hyler's office is probably one of the busiest single doctor practices I've ever seen. He is a highly regarding OB and has even been voted by the OPMC nursing staff as their favorite. Well, I'm sure "favorite" wasn't the word that was used but I can't remember the honor given to him but it was based on the votes by the nurses as the doctor they like working with. Anyway, it was upsetting to learn I wouldn't be able to have him deliver Baby Brother. His office was the most sympathetic when they heard the news. The other offices acted as if it was no big deal, they deal with craziness all the time. But Dr. Hyler and his staff were really wonderful. One of his office staff even had her baby on my birthday in my honor. At least that's what I'll tell myself.

I had my first visit with my new doctor on Friday and I have to admit I was happy. I didn't know what to expect but my friend had used the same doctor with one (or maybe more) of her kids and her sister works there. I know her sister and the sister's daughter so already I felt a bit of a bond with the office. I didn't have to wait forever (if you've ever been a patient of Dr. Hyler you know what I'm talking about!). As a matter of fact for being a new patient they had me in and out of there pretty quickly. Hopefully that remains the case.

Everything was good. My blood pressure was 132/70 and there was no protein in my urine. I have to watch it closely since Christian was premature due preeclampsia and high blood pressure along with protein in the urine is the first signs of it.

Dr. Glas is who I met with. She said she would most likely be delivering me but that if I went into labor over the weekend it could be anyone. I explained once my kids are settled in my belly they do not want to come out! I was induced with Christian and after 12 hours was dilated a centimeter. That's why they did the C-Section. So with Georgia she was a repeat section and I had her 3 days before my due date. At 3 days before my due date I still hadn't dilated at all. Not at all. So I don't think we have much to fear with Baby Brother. Although it does appear he enjoys forging his own way.

So, it looks like, if everything goes well and he doesn't decide to keep letting his heart grow out of control, that Baby Brother will have a birthday of January 6th or 7th of 2014. So either he'll share a birthday with Mr. Bean or Katie Couric. Let's just pray he doesn't share one with Christian.

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!

My Mother-in-Law took the girls to Disney and Build-A-Bear in the Avenues Mall. Piper really wanted to go to Build-A-Bear. She loves stuffed animals as much as Georgia does and had to have something. Georgia loves stuffed animals and everything Disney and since you can get both stores at the Avenues, off they went. They both came home with tons of stuff. Typical! But isn't that what Grandma is for? To buy you all the things your parents say No to? Growing up my Dad's parents had a grocery store. By today's standards it would be considered a neighborhood convenience store. It also had pool tables for the neighbors to hang out. Although I was too young to remember too much about Gullett Grocery I do remember if I was there my Pappaw gave me a small Coke in one of those 8 ounce bottles. I always looked forward to that. Anyway, a grandparent's job is to spoil their grandkids and that is certainly what Grandma was doing with Georgia and Piper.

One of the things they came home with was a baby blue teddy bear from Build-A-Bear for Baby Brother. This bear is so soft and matches his room perfect. It was a very sweet gift. A gift that hit me in a way I never imagined possible.

Have you ever been to Build-A-Bear? Have you made one of their bears? It's just the animal and you get to stuff it and dress it. Something else they have you do is pick a heart to give your bear. And they tell you to rub it between your hands, kiss it, make a wish and then put it in the bear. The thought of this little bear being given a heart for my baby, wishes being made for my little man and sealing it all with a kiss was too much for me to handle. Even as I type this the emotion of it all comes flooding back to me. Who cries over a silly stuffed animal getting a heart? The answer I suppose is a Heart Mom. A mom who now understands all too much how important those little hearts are.

On Friday, October 18th, my Mother-In-Law, Joan, and niece, Piper, came to visit us from England. It's always nice having them here. My Father-In-Law couldn't get the time off work and we missed him but it was nice Mum could come with Piper. I'm sure it goes without saying but Georgia was beyond thrilled to have them here. Georgia really has the biggest heart and loves them all so much. Christian was happy they were here too but he's a teenager and doesn't get excited over anything except maybe video games. Typical teenage boys!

Their visit coincided with a few doctor's appointments for me and Baby Brother so I invited Mum along. It's difficult to answer her and my Father-in-Law's questions when I don't really know the answer to them either so it was nice her visit would allow her to come to the appointments with me.

Monday, October 21st was a follow-up visit with the ROC. I knew this visit shouldn't take as long as the previous one because now we know what we're dealing with and the specialists have been brought in.

We went in for the sonogram and the tech doing the sonogram is the same one that did the first one. The "normal" one. (this is now the 3rd sonogram with ROC) She even made a couple of comments about the fact she didn't see any problems the first time and how she was going back over her pictures and the scan itself to see what she missed and why she could have gotten it wrong. I just figured baby was too little but apparently she was beating herself up over it. I just remember Jason and I rationalizing how the first scan seemed ok and then we had a crazy woman do the second scan (I mean, she had me on my side and everything) so obviously crazy lady was wrong and the first one was correct. So, I kind of was a little miffed at her but it isn't really her fault is it?

Anyway, the scan didn't take too long but then we had to wait for the doctor to come in. That took a little while. Once he came in he immediately asked if Baby Brother had a name. I told him not yet so he said "Ok, well his name is Carlos" and then proceeded to talk to me about "Carlos". He was surprised to see any left ventricle at all because usually in HLHS babies the left is so severally underdeveloped they are very tiny in comparison to the right side. In his opinion this was good news. He asked me what I knew about HLHS and I said very little but then went on to tell him what we know and he smiled and said it looks like we know much more than we think we do and he thinks "Carlos" is in pretty good hands. He was very positive and that made me feel good. Finally I felt good. I told him even though the news was devastating we were hopeful with the little bits of good news we've gotten. He looked at me and said "No, having him at Orange Park and then taking him home only to go into his room to wake him and find him not breathing, THAT is devastating! Now we know and we can take care of him!" Wow! Talk about putting things in perspective. He said Baby Brother's heart is a little large and Mum asked if it could be because the right side is pumping so hard to take over for the left side and he said possibly. If it isn't exactly obvious by the name he gave Baby Brother the doctor is of Latin decent and speaks with a very heavy accent. My Mother-in-Law is English and also speaks with an accent so I was just wondering if they actually understood each other most of the time ;) The doctor said "Carlos" was growing wonderfully. He is in the 58% for weight and height. And, most importantly, at this time he only can see HLHS. No other issues with Baby Brother. What a relief!

It's been a while since I posted. Lots of things to keep me busy. Some good some not. I am finally taking the time to sit and update.

First things first - Baby Brother has a Blood Alliance Donor account all set up. If anyone has considered donating on his behalf the account number is

R164.

The name on the account is either Baby Boy Clarkson or Cassie Clarkson. I'm not positive what name they put it under.

Thank you again for all your love and support.

Sometimes you just need some time and company.

I have been blessed with great family and wonderful friends. I have spent time with them. They have heard my many complaints as well as my triumphs. As I've said before, I'm a talker. It makes me feel better to talk to people. Once it's left my mouth I feel comforted. So to those who have listened, including all those who have read this blog, I thank you from the bottom of my ever expanding heart.

Tomorrow my Mother-In-Law, Joan, and niece, Piper, come in for a visit from England. We are really excited and have been preparing for their arrival. You know what preparing for an in law is like, right? Yeah, tons of cleaning. I hate baseboards. They are so dirty! It has been a welcome distraction though. Thinking of what needs to be cleaned, dusted or bleached next doesn't leave a lot of brain power for HLHS.

Tomorrow also starts my new round of doctor's appointments. Tomorrow is my glucose test with my regular OB. The midwife asked me to refrain from sugar as much as possible the day before so the test has an even better change of coming out normal. So as I type this I am eating (gorging really) on Little Debbie's. I need help understanding moderation :/ Monday I go to the specialist for another sonogram. We get to see how big Baby Brother has gotten. He should be north of 2 and a half pounds so let's pray he is! Remember, the bigger he is the better his chances in surgery. Thursday we are back at the Pediatric Cardiologists office. Another sonogram but, of course, focusing on his heart. Last visit his aorta was measuring 2.6 millimeters. Then on Friday I have my first appointment with the new delivering OB from Baptist Hospital. Add to all of this I have 3 papers due next week for school, the in laws and typical stay at home mom duties and you have one tired Cassie! I'm looking forward to the craziness.

Many have asked what they can do for us during this time. I didn't really know how to answer that question because I don't really know what we will need. Now that I've thought about it here are some things that came to mind.

If you are the praying type and would like to offer prayers on behalf of us and our son we would ask for:

1. Complete healing if it be the Lord's will.

2. Strength for our family.

3. (Probably the most important!) Growth for Baby Brother. We need him big and strong! We need him big and we need his heart big. We need his aorta big and we need the rest of his heart to be able to work extra hard for him. The overall message to take from this is BIG! Seriously, I'm a scheduled C-Section. No pushing. So big is not a problem! Besides, have you seen me? He has plenty of room in this belly of mine. ;)

If you find yourself in the temple please add the Clarkson Family to the prayer roll. This will give us great comfort. To those who already have we thank you so much! I think it would be really awesome to have his name on every prayer roll in the country. Also, if you find yourself in the celestial room and happen to remember us, will you offer a prayer on our behalf?

We never know what our Father in Heaven has in store for us. Maybe complete healing is in the plan. Maybe it isn't. We are submissive to his ultimate plan and will take every blessing along the way.

At some point in the very near future we will be setting up a blood bank account for Baby Brother and will need donations. We are in a very weird situation with donating blood. I am pregnant (obviously) and they won't let me donate until 6 weeks past delivery, so I'm out. Jason, being from England, lived in Europe in the 80's with a madcow disease outbreak so they won't let him donate. Apparently anyone who visited or lived in Europe during this madcow outbreak is prohibited from giving blood. Ever. Even our service men and women who were there during that time. Anyway, we will need donations that we cannot give ourselves and those who are able we would welcome the donation. If donating blood isn't your thing we are totally cool with that. I'm not the donating type myself so no judgments or funny looks from us if you aren't the type.

Once Baby Brother gets here we will very gladly accept frozen dinners :) We have no idea what our schedule will be like but most of my family and friends know my sister and can get in touch with her for dinner deliveries or any other questions.

Lastly, and this is probably as important as prayers offered on our behalf, we will be asking for your time. The thought of our baby in the NICU without a loved one there is terrifying. We know babies heal so much better when they have someone there for love, comfort and touching. We are going to be asking if people are willing and able to donate blocks of time to go and sit with him to give Jason and I breaks. Also, we will be needing babysitters for our other two children. We don't want any of our children to be left without loving guidance, support and comfort. Of course I will know more once we get closer. And most likely my sister will be the point of contact through all of this. I haven't asked her yet so if you mention it to her make sure to ask if she's read the blog ;)

Time to go finish my office design project.

WARNING ~ THIS POST IS DRIPPING WITH REALNESS AND OTHER NOT SO NICE THINGS. SORRY IN ADVANCE!

I was on my way to school this morning when I saw an accident right in front of where I needed to turn. As I was turning I saw it was a motorcycle that had been hit by an SUV and then another SUV hit the first SUV. Accidents happen. They happen daily. There was no ambulance. I'm hoping that means all drivers were OK. What really got to me was how I processed this accident. I was almost immediately in tears. My daddy drives a motorcycle. I guess in my mind I somehow saw my daddy as being in the accident. I'm not really sure why this accident affected me like it did but it really hit raw emotions in me. I called daddy to remind him to be careful when he's out and about and he promised he would be and I felt better.

There was another phone call previous to the accident where daddy was telling me about someone who said something to him about Baby Brother and this family was thinking of us and, again, it made me realize how raw my emotions are. A little background. This same person is part of a bigger family unit that has never, ever, said anything nice about me or to me. Nothing. As far as they are concerned me and my family are worse than dirt and they wouldn't pee on me if I was on fire. Sorry, but that's the way it is. I've dealt with these opinions of me for years from them. I have spent YEARS being the bigger person. Y-E-A-R-S! They have not only put me down but my family as well. Spread lies and rumors and judged me for things that I didn't do, wouldn't do and all I did in return was try so very hard to be the bigger person, to stifle all those feelings of disgust and hatred and just really hold my head high and be the bigger person. Not too long ago, within the last year, I had a personal setback. There were some things that happened to me. I take full responsibility for my involvement (or lack thereof) and blame no one but myself for the situation I was in. I didn't hide any thing from any one. I talked to the people that mattered and followed advice of not talking to other people from my spiritual leader. This was a time in my life I would love to forget about but guess what, it is now a part of my history and who I am and has served to make me an even better person than I was before. Trials do that to a person. If you've been reading my blog then you might recognize I said the last year and that in the same last year Jason and I became closer and stronger. So yes, it all corresponds. Back on topic, this "family" went out of their way to make sure EVERYONE knew about my situation. And of course most of the vile information they were telling was half truths at best but most of them were lies. They even posted things on the door to my home to make sure we "knew they knew" but didn't have the guts to "sign" their door hangings. Lest anyone find out their true selves. So when this person approached my father and tried to insinuate their sorrow for my situation I unleashed. I may have even yelled at my own father for even listening to their bullcrap. I am finding that the strength I used to have to stifle and shut down these feelings is no longer there. My strength is focused on my son and what he needs and my family and what they need from me. I can't muster any more strength to be the bigger person. Does this make me a bad person? I sure hope not. What you have to understand is this is the kind of family that will sit around the dinner table and laugh and say "well, that's karma. She's a horrible person. So now her baby has problems. See kids, do good like we do and everything will be ok. Do bad like she does and god will hit you." So to this family ~ cause I know you're reading this (even though I have taken measures to try and make sure you couldn't)! You pretty much said so to my dad! ~ The loving Father in Heaven that I know doesn't punish others for Adam's transgression. All a part of that atonement "thingy" you claim to know so much about. I don't live in a world where my loving father would ever "punish" my child because I may or may not have done something in my past. If that were the case there would be children all over this world with every affliction known to man. Your kids most especially INCLUDED! Luckily for you and the rest of us he doesn't do that. So please, take your fake sympathy and spread it to someone who just might believe it. Cause that ship has sailed for me. I don't believe a single thing that comes out of your mouth. That's the problem with lying. Do it enough and people don't believe you anymore.

So yeah, when my dad told me this person approached him I didn't have the strength to be the bigger person. I'm working on it though. I'm raw. My emotions are on high alert. Please Lord forgive me. I'm trying. I promise I am. I suppose that's why I was so emotional seeing the accident. I was already on edge after the original conversation with my dad so this sent me over the cliff. I'm sorry for the previous paragraph. Some things I just can't stifle anymore and getting my thoughts out there help get me through and eventually over them.

{Rant Over}

To everyone else who has been so wonderful and supportive and offered prayers on our behalf I want to truly thank you from the bottom of my expanding heart. For as low as my emotions have been allowing me to go they are also allowing me to be lifted higher than you could ever imagine. Every prayer, every good thought, every everything on our behalf is felt and is lifting us and I love you all for being the best support group this family could ever imagine having.

Why tell a story 5 times if you can tell it twice? Am I right?