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.

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.

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.