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.

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 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.