The problem with blogging, or more accurately NOT blogging, is you get used to not blogging and then you have so much time to make up.

The last I blogged James was born. Today he is in his swing in our den at home sleeping. How did we get from birth with a breathing tube to the swing? Lots of blanks for me to fill. And I will. I hope you can bear with me. I want everyone to know his journey.

Once James was born all the doctors did their assessments and tests and determined him to be in good health, minus a small little life threatening heart defect ;).

Jason and I were thrust into a whole new world that we thought we were prepared for but you realize quickly how unprepared you really are. We learned about oxygen saturation percentages and heart rates and flow vs. liters and versed (and I'm not sure if that's how you really spell it).

During this initial assessment an echocardiogram was done and found James to NOT have Hypoplastic Left Heart if you can believe that! His left side was small but it was pumping! He was downgraded to critical aortic stenosis with a hypoplastic aortic arch. What does that mean exactly? Well, I don't know. Not exactly. But I got the jest of it. Aortic stenosis and mitral valve stenosis are the beginning factors of HLHS. Since James's mitral valve was not as bad as they originally thought. He still had many issues. When I say he was downgraded this isn't to mean he was ok by any stretch of the imagination. But now we had a few different options. We could continue on with the Norwood or we could try for a catheterization procedure to balloon open the aortic arch which would hopefully allow more blood flow through the arch and therefore allow the left ventricle to grow and keep him a two ventricle baby. Any time you can keep a child a two ventricle baby this is obviously the preferred method. But would Baby Brother be a good candidate for this procedure? The doctors would discuss it at Cath Conference on the next Monday morning.

I spent the weekend being wheeled between my room and James' room. Jason slept at James' bedside the entire time except for one night when my sister slept in the room with him. We got a room at the Ronald McDonald House and when I was released on Sunday I tried to settle in.

All of our family left by Sunday except for Jason's mom. She stayed with me. The plan was for her to stay with me the first week and my father in law to go back with Jason which would help Jason get the kids to and from school and just generally help out. They would come back the next weekend at which point they would all go back leaving me alone but only for a day or two when my in laws would be back for another couple of days before they had to leave to go back to England. They would leave on Thursday and Jason and the kids would come back on Friday and then my mom would come and spend week 3 with me. This would get me through the first surgery and some recovery time before having to be alone.

Monday morning at Cath Conference they decided James was a good candidate for the valvuloplasty of the aortic valve.

So James would go to the Cath Lab on Tuesday, January 7th.

One week ago today James David Clarkson entered this world kicking and screaming!

I was taken into the surgery room and given my spinal and ready for baby to come. It was a normal surgical room with one difference. In the left corner of the room was a smaller room. Not much bigger than a walk in closet. In that room were a couple of people and a hospital room on wheels.

I was more terrified than I had ever been in my life. I have been through some pretty weird things in my life and some of them quite scary but this was more than I could emotionally handle. I cried many tears before walking into that surgical room. I knew as long as my baby was in my belly he was fine. I knew as soon as he came out the real struggle would begin. Would there even be a struggle? Is my baby as sick as Wolfson's says he will be? Would I ever hold him? See him take an actual breath? Hear him cry? Would I ever see his chest move up and down taking breaths? Would my baby be OK?

I remember people talking and buzzing around. It seemed to be taking forever. Then I heard the doctor say "Wow he's a big boy!" Jason popped up in the chair and looked over the sheet but James hadn't been pulled out yet. Then I felt them take him out of me. It was weird really. Almost like he didn't want to leave but was being forced out by suction.

Then I heard it. I heard him cry. I heard that sweet little voice I knew instantly belonged to my baby. If he can scream then his lungs are functioning! Jason popped up again and said "he looks bigger than Georgia was!" And then the most beautiful thing I've seen in a long time. A tiny little scrunched up face over the sheet. Only a couple of seconds but there he was. My sweet baby James. Crying! They took him down and got him over to the ICU team to start their part. One of them yelled from the little room "He's turning pink!" Turning pink means oxygenated blood was getting to his body. Something that happens in normal everyday babies. Not always the norm for Hypoplastic Left Heart babies. This was more good news!

Jason followed our son into the room and came back to tell me James was 7 pounds 14 ounces and I smiled. They wanted a big baby and that's almost 8 pounds so I thought I held up my end of the bargain. I looked at Jason and said "7.14?" and he said "No! 9 pounds 14 ounces!" What??? I just delivered an almost 10 pound baby? Holy cow! Jason just laughed and said yeah, 10 pounds! This, by the way, is his idea of a joke. He tried to tell me Georgia was a boy but he didn't realize the doctor had already said she was a girl. This time he got me.

Jason followed the team to the Cardiovascular Intensive Care Unit. They stopped by my head on the way out of the room so I could see him and see that he was calmed and stable. He did have a breathing tube which isn't great but it wasn't horrible either. He was alive. He was breathing. He was pink.

I haven't heard his sweet little voice since. The breathing tube makes it where he can't vocalize but hopefully soon it will be removed and we will be able to hear that sweet voice again.

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.

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!

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!

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.}

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.

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

I took a break from the "news" part of our journey because I needed the break. The emotions of reliving everything can be overwhelming. Having said that, I needed to relive them. I needed the outlet.

In case I haven't mentioned I am also a full time student. I'm taking classes at St. Johns River State College. 4 of them! This, along with being a stay at home mom and our new HLHS diagnosis has been keeping me very busy!

I was sitting in my office taking the midterm for Florida Heritage (a really neat class on the history of Florida dating back to 10,000 B.C.) when I overhear the sweetest conversation going on in my den. (Family room to those who didn't have my mom growing up)

I'm sure it goes without saying but we have pictures all over our house of "normal" hearts and "HLHS" hearts. Georgia has become fascinated with Baby Brother's heart. She really doesn't understand what's going on, what 4 year old would?, but she sure likes to think she does. She has been running around the house talking about Baby Brother's "left heart syndrome". Today she picked up the pictures and asked her Daddy to tell her about Baby Brother and his heart.

I hear him very tenderly explaining the heart, what Georgia's heart looks like, where Baby Brother's heart is different and how the doctors are going to help make it more like Georgia's heart.

It's in these precious moments that I realize my heart is sitting in our den having sweet conversations.

And it has nothing to do with Baby Brother....

But we'll take it!!

Actually, we don't really have good news. We just haven't had any bad news and that, in and of itself, is good news.

This has been a good week. Blogging and sharing our story with our loved ones and friends has been very cathartic for me. It has allowed me to talk about this in a way I couldn't before with the people I want to lean on.

My emotions are running high. So very very high. I just never know when it's going to hit me. In the beginning I couldn't start this story without the tears coming on full force. Now I can get through 2/3 of the story before they let loose. This is progress! I'm finding great comfort in knowledge. You know the old adage Knowledge Is Power, well that's exactly how I feel. Interestingly I have found for Jason it isn't exactly the same. He wants to know about the procedure and about length of stay and those sorts of things but feels he doesn't need to know about the things that don't matter. Now, don't get him wrong, everything matters, but what he means by that is I got some advice to ask about a particular part of Baby Brother's heart and it's condition because that *should* tell us if this will be a very serious case or a normal serious case. So I want to know that information. Jason doesn't. Because knowing the answer won't change the fact he will need surgery or that there may or may not be complications. When I sit back and really think about it he's right. The answer to that question doesn't really matter. BUT - I still want to know the answer. Now that I know about HLHS I want to become an expert. I know there are many of us like that out there. There is a point where you know too much so I'm toeing the line. Making sure I learn enough but not too much.

I have had so much support from the heart community. They all say the same thing - not really the club they want to welcome people into but one of the best communities there are. I feel very fortunate to have the friends and family I have who then connect me with even more people in this community. I have had some really wonderful advice. One woman even wants to help me put together a health binder. Said it really helped her going through the process. I have a shopping list! Binder and 2 packs of dividers. It makes me feel like I'm making progress and really preparing myself for what's to come.

As a final note I want to address a very sweet friend's concern. She was brave enough and loved me enough to admit she felt conflicted reporting her good news about her baby girl due in November while I am going through such a hard time. I can't tell you how this touched my heart. Here is my friend who has struggled for 10 years to have a baby and she's concerned about hurting my feelings because of my situation. So ~ to all our friends and family ~ if you stop sharing your good news I will be hurt! I NEED to hear the good news. I WANT to laugh and love and live your journey with you. This is so important to me. When I can revel in your good news my bad news doesn't seem *so* bad.

Sorry if this post seems to go all over the place. Once I start typing I can't control where my thoughts might lead. (I should probably use this as a warning on all my posts from here on out)

PS ~ Spellcheck really hates HLHS and Hypoplastic.

There have been times along our journey into marriage that I wasn't positive we would make it. We have had more ups and downs than an amusement park ride. There was even a point I thought the downs heavily outweighed the ups and didn't know what would happen. We have faced so many struggles in our short 8 and a half years of marriage. Things started to look up for us within the last year. Maybe the 7 year itch was getting the best of us. Who knows. But what I do know is:

There is NO ONE anywhere on this earth I would rather go through this with than my Jason!

As I said, this last year has been one of healing and realization for both of us. Finding out Baby Brother was on the way was a shock that brought us even closer together. Finding out Baby Brother had HLHS has been, in the weirdest way possible, one of the best things to ever happen to our marriage. Now don't get me wrong. I would trade in a great marriage and being a heart mom for a mediocre marriage (with possibilities of becoming great) and a perfect healthy hearted baby. (if that makes sense) But this has truly made us feel like partners. This is something we are in together.

Jason has been my rock! He has forced me to rest. He has held me and dried my tears. He has calmed my troubles. One morning I woke up at 5 am crying. (this is a part of my new normal) I had my back to him in the hopes of not waking him. Instead what I got was two strong arms wrapped around me and a beautiful (and sexy accented) voice in my ear reminding me we will be OK. We will get through this together. That our baby is in great hands with, not just the doctors but, me. He has reassured me this is not my fault. (mother's guilt and all) He has prayed with me and for me and especially for our little guy. But most importantly he has just been there. He hasn't left my side when I needed him most.

My prayer is to be strong enough to return the support when he needs me. I know that day is coming. He showed his vulnerable side when they explained the diagnosis and mending procedure. I'm not sure he's ever been sexier. ;)

So, to my rock ~ I love you more than to the moon and back. My love and admiration for you has grown ten-fold these last two weeks. You and our children are my reason for being and I will use my last breath to tell you how much I love you.

Hearing this diagnosis was the first time I had ever heard of such a thing. It is a Congenital Heart Defect (CHD). There is no immediate family history in my family or Jason's of Hypoplastic Left Heart Syndrome but there doesn't need to be. There are so many unexplained diagnosis(es)? Diagnosi? What is the plural of diagnosis???

Here is an interesting CHD fact: 1 in 100 children will be born with a CHD.

HLHS? 1 in 5000 children will be born with HLHS. Two-thirds will be boys.

Scarier even? There are SOOOOOO MANY CHD's.

Interesting Points: My cousin's son (on my dad's side) was born with HLHS and is today a thriving little boy. This gives me hope! I am now "friends" with another "heart mom" (through facebook and email, that's why the quotes around friends...haha) whose son had HLHS and some other issues and he is now a thriving little boy. This gives me even more hope!

I never envisioned myself as a "heart mom" but this is our new normal. I'm a heart mom! Jason is a heart dad! I'm not sure there is a better man suited for the job.

There is still the stages of grief I am going through. I have accepted the diagnosis but I'm grieving over what could have been. It's very selfish of me and I'm trying so hard to let go of this. I've been reassured this is extremely normal.

I found a great and informative animation on youtube. It's a little long but well worth the 7 minutes if you are interested in HLHS. It also goes through the procedures Baby Brother will endure.




We continue to ask for prayers for our family. We need Baby Brother to be big and strong! All of him! Especially his little heart.

Those were the longest three days of my life. The waiting is horrible. 

September 23rd was a beautiful Monday. We woke and started calling Marky for his birthday. He was turning the big 4! I love that little kid so much. He is hilarious and can always brighten my day. There was going to be cake and ice cream later but unfortunately I wouldn't be able to attend. The kids and Jason went though.

Jason had the day off so he went with me to the second ultrasound. One good thing about "advanced maternal age" is the amount of ultrasounds. I've seen Baby Brother so many times I can't even keep count! Luckily we didn't have to wait long and the ultrasound tech called us back. This was the longest ultrasound I have ever had to sit through. As fun as it was to see the little guy you can only lay there for so long before you are completely uncomfortable. Especially with all the poking trying to get just the right picture. Not to mention Baby Brother is still very comfortable being a mover and shaker. I can't tell you how many times the tech said "I wish he would just sit still". We laughed. That's our boy :) This ultrasound last 2 hours. Yes! 2 HOURS! Like I said, longest ultrasound of my life! The tech kept saying she couldn't get him to sit still long enough to measure his aorta in his heart. I didn't even know they measured the aorta! I knew they measured the femur and the skull and things like that but seriously, they even measure the aorta?? Talk about millimeters! Finally she decided to give up and just said she would go get the doctor to come talk to us. This didn't alert us in any way because that's what happened with this first scan. The doctor came in, told us everything was measuring normally, tried once again to get me to agree to the genetic testing (which I, again, declined) and told me not to gain too much weight since I'm already a big girl. So, when she said she was going to get the doctor we didn't flinch.

Dr. Acuna from Regional Obstetrics Consultants (the ROC) came in and started going through all the pictures. This looks good, that looks good, good measurement here, measuring good there, and then she came to the pictures of the his heart. She got very quite and went through the pictures without saying anything. The look on her face let me know something was not quite right. She stared at the pictures and then began to talk. There was a problem with the heart. She wasn't really sure of the exact problem but they could see blood flowing through the right side, top and bottom, but the left lower chamber seemed to not have blood flowing correctly. She said a lot of words I didn't really understand and I just cried and held Jason's hand. She wanted me to go to a Pediatric Cardiologist to let them take a look and make the final diagnosis. Could I really be hearing this right? My baby might have a heart issue? How is this even possible? I immediately asked leaned into Jason and whispered "let's keep this between us for now". I don't know why. It just felt like the right thing to do and I'm glad we made that pact. As I was trying to check out a nurse called me into the office so we could make the appointment together. On a sticky note I saw "mitral valve and aortic stenosis" written on it with the name of the Cardiologist. I asked if she would write that down on the paper she wrote my appointment but she didn't. She said she would then I guess forgot, but one doesn't forget a possible heart problem of their unborn child. The appointment was scheduled for Thursday, September 26th and as a parting request she asked that we not "google" stenosis but that if we absolutely had to, to please stick to collegiate websites. Anyone can create a website and put anything on it but the collegiate sites will have the backing of science and experience to back them up. They will give us real and true information.

The ride home was weird. Jason and I spoke but it was almost as if we were in a daze. Confused about everything. I cried. Jason was strong. He reminded me of our little stinker not letting them get accurate measurements and told me to remain open minded until we knew exactly what was happening. He said it was probably nothing and the appointment on Thursday would confirm it. All of his supportive words and common sense still didn't make me feel any better. You see, I've had so many dreams (nightmares!) about miscarriage. I must have dreamed no less than 5 times that I miscarried this little guy. I even had an appointment with my regular OB where they couldn't find his heartbeat. They had to stick me on the ultrasound machine. Luckily he was just hanging out low and they were trying to find him higher. What a relief it was to make it past the 1st trimester. To know he was still there. But that sinking feeling only seemed to subside for a bit. So, as you can imagine, this almost felt like an Ah ha moment. But not in the good way.

That night the kids and Jason went to my parents for Marky's birthday party. Like I said, I couldn't go so I stayed home. Jason hated leaving me after the news we received but he took the kids because it was important they be there. He texted me basically the entire time. I'm sure he seemed like a horrible party guest but hey, his wife comes first. And that is OK by me. I was thankful for his texting and checking in. Now we just had to wait until Thursday.