Wednesday, October 30, 2013
A New OB
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.
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.
Tuesday, October 29, 2013
Questions and Answers
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.
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.
Monday, October 28, 2013
Pediatric Cardiologist Follow-Up
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!
So, on the table I went for another scan. This one took about an hour, maybe a little more, but they got what they needed and then it was time for Dr. Lacey.
Dr. Lacey came in and remembered me as the woman with the husband who almost passed out. She was actually very fond of that because it humanized Jason in a way she doesn't normally get to see from husbands.
Then it was time for her to talk. She was concerned. She saw good things from the right side. It's squeezing great. Then she started with the big words again. Words I'm going to have to look up when I'm done typing this! Luckily I was given great advice of taking a notebook to record questions and their answers so that's what I did. It really helped. Anyway, she said this is not a normal case of Hypoplastic Left Heart Syndrome. It would appear to her that Baby Brother's heart was developing and functioning normally until an "event" occurred. Once this "event" occurred it deadened his left ventricle and stopped developing. This goes back to what ROC said. He has a good size left ventricle, not quite as big as the right but not terribly far off, it just wasn't working. She said she was "unclear what initiated the coronary abnormality but it possibly could have been a heart attack." WAIT! WHAT?? Yes! She said it is very possible my baby had a heart attack and that's what caused his heart to stop. It makes sense. A heart attack is essentially a deadening of the muscles in the heart. But holy cow! So this isn't a typical case of HLHS. Also (because there's always an also) a normal heart is about 1/3 or 30% the size of the chest. My baby's is 40%. This in and of itself isn't horrible news. But coupled with this "event" AND (yes, there's more!) 2 mm of fluid around his heart, they are worried about heart failure. Yes, heart failure. My head was spinning. Interestingly enough I was able to concentrate and take notes but have to admit I'm still unclear about everything. The important thing to remember, she told me, was that he doesn't "have" any of these things she mentioned to me. But these are the signs of something that could possibly be beginning. So naturally they want to monitor me closely and now I have every 2 week appointments with her. I told my family I just need to get an apartment downtown. Seriously, I have to be at the OB, the ROC and now the Cardiologist every two weeks until Baby Brother is born. After that try and get me away from downtown! I'll be a permanent resident at Wolfson's NICU.
Dr. Lacey said we are now dealing with an unusual case of HLHS along with monitoring me to make sure we don't find Cardiomegaly, Pericardial Effusion and Hyrops Fetalis. I'm not even positive she was speaking English! She reminded me we spoke about a heart transplant, which we turned down in favor of the 3 step procedures, and that transplant still has it's complications. Then she said something else and mentioned transplant again. But never came out and said, look I'm recommending transplant. She also said she is having a board meeting on Thursday with her colleagues and will be putting my case on the meeting agenda. She is going to present my case to the other pediatric cardiologists to get their opinions on my case. It is my personal opinion she didn't want to say anything specific until she had the backing and/or opinions of her peers.
When she finally finished I asked if I could ask my questions now and she smiled and said sure. My questions seemed moot at this point because they all had to do with the 3 step surgeries and I get them impression she is going to tell me at my next appointment that Baby Brother needs a transplant. I'm not even sure that would be bad news. If he indeed had a heart attack and now his heart is growing to sizes it shouldn't then one could assume he has very serious heart trouble and would need a new one. Like I said, my mind was spinning yet again. I was going to walk in there an show Dr. Lacey how smart I had become in 4 weeks. Well played, Dr. Lacey, well played.
Here's looking forward to 2 weeks when I can hear more things I never knew I never knew and asking questions that seem to now be irrelevant.
Sunday, October 27, 2013
Build-A-Bear
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.
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.
Saturday, October 26, 2013
ROC Follow-up
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!
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!
Blood Account
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.
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.
Thursday, October 17, 2013
In Good Spirits
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.
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.
Tuesday, October 15, 2013
Emotions are funny little things...
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.
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.
Monday, October 14, 2013
We've Got Siblings
Why tell a story 5 times if you can tell it twice? Am I right?
Saturday evening (the Saturday after the Pediatric Cardiologist appointment, same Saturday as telling the parents) I sent a mass text to my siblings that said
"Hi everyone, Jason and I need to call a family meeting for tomorrow at 6. We are sorry for the late notice but it couldn't be helped. Your spouses/partners are also invited but we would ask that you plan for your little ones accordingly as we are asking for undivided attention. Please let us know as soon as possible if you are or are not able to attend. Thank you. I love you all."
Seriously can't imagine what I would have thought if I got this same text from one of my siblings. Unfortunately for me and one of my brothers we were going through some tough times so I wasn't sure he would come and I didn't know how to put in my text the urgency behind this family meeting without spilling the beans but I wanted all of my siblings there. I really didn't want to tell people over the phone or even through text about our baby's congenital heart defect. I'm so thankful all of my siblings came. Not because I mind having to tell the story over and over again but because it was important to them to support me. Simple as that.
They all arrived within minutes of each other, along with my parents, and so Jason and I began again to tell the story. We explained, as best we could, HLHS. We explained the options. We went through the procedures. We cried. We laughed. We answered their questions. Some questions really helped us because they were things we didn't know and we were able to find answers. Their reactions were the same as everyone else. Speechless.
After they left we started getting text messages from my brother's wife (the wife of the same brother I had tough times with). She was telling us about a Christian group her and my brother really enjoy and how at a concert he talked about his son being born with a heart defect and he wrote a song about it and his feelings. As she was searching for the song to send me she found an article about this guy and his son and it turns out his son also has HLHS. She sent me the link and the lyrics really do tell the story of how I feel about my precious son. I am so grateful we as a family can get through hard times and come together for the good of something bigger than all of us. As I said in a previous post, this isn't just happening to Jason and I. This is happening to our entire family. This affects us all.
Telling Jason's sister was proving to be a little more difficult. His sister is an international mogul ;) Seriously! She does a lot of traveling with her job and she was in India at the time. The time difference between us and England is 5 hours. The time difference between us and India is 9! So as we were going to bed she was waking up and vice versa. Finally I just sent her a Facebook message asking when we could talk. She replied back and we set up a time to skype. The skype session was a little funny because the way her ipad was set up we really only caught her eyes and the top of her head, like it cut her off just above the nose, but her eyes were all we needed. Jason started telling her and he once again broke down. Something really interesting about my husband is he is one tough cookie. But when it comes to his family, especially the women in his family, he isn't so hard. His mom, sister, grandmothers and now daughter all have that effect on him. It's really sweet to see. So, as he's telling his sister he started to break down and that made me cry! I rubbed his back and continued to tell his sister the news. Any guess on what she said? She wasn't exactly speechless but all she could muster was S**T! And she kept repeating it. Not in a vulgar kind of way but in that, "I don't really know what else to say" kind of way. You know, Speechless!! Seems to be a common theme. We talked a little longer answering her questions, explaining the options and procedures and, as it was late for her, said our goodbyes.
As with all of our family we have allowed for processing time. This isn't something you can hear, process immediately and then know what to do. Everyone copes differently. Some of our family and friends we hear from everyday. Some we haven't heard from since they learned the news. I'm not offended in any way by the ones we haven't heard from. What do you say to me or Jason? It's like Saturday Night Live and 9/11 when Lorne Michaels asks if it's ok to be funny again. People want to treat us differently because we are different now. But I want to remind all of family and friends ~ just because we are looking at life from a different angle doesn't mean we are different people all together. Yes, this has changed us. But we are still the Clarksons. {maybe that's the *real* reason some people are avoiding us ;)}
Sunday, October 13, 2013
Telling Our Parents
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.
So, bringing you up to speed, we got the news on a Thursday from the Pediatric Cardiologist. Hypoplastic Left Heart Syndrome. I just can't say it enough times. Almost like the more I say it the more familiar it becomes. Who knows. But we got the diagnosis and I can't tell you one thing that happened on Friday. Not one. I just remember my sister kept Georgia for us on Thursday while we went to the pediatric cardiologist. She had no idea what was going on, she just asked if Georgia could spend the night and she would take her to school the next morning. I talked to Jason and this worked out for our appointment so we gladly accepted the invitation. Then, on Friday, my parents picked up Georgia from my sister because they were having a small slumber party with my one of our nieces and a soon to be niece. (she is the daughter of the woman my younger brother is marrying so she's already our niece in our hearts) My parents said they would bring Georgia home on Saturday. All of these arrangements were made BEFORE the appointment on Thursday. And thank goodness they were.
Lie! I do remember one thing from Friday. I remember us telling Christian at dinner on Friday there was an issue with Baby Brother's heart. We didn't think it would be fair for our 16 year old to find out from someone else (very likely to happen once people start hearing about it) or in a group with a ton of other people. But that's it, that's all I can really recall about Friday.
Saturday we slept in a little. I was mentally and emotionally exhausted. And yes, I believe they are two separate states of mind. Midday I got a call from my parents saying they were on the way to bring Georgia home. Once they got here Jason and I asked if they had a minute so we could talk to them. We started to tell them what was going on and the looks on their faces will live with me for the rest of my life. You always think about what this does to you. How this shapes your world but you forget that this baby, our baby, means so much to them too. They are his grandparents. I am their daughter. The hurt seems to be multiplied. (these are EXACTLY the same looks and emotions from Jason's parents as well) For those who don't know my dad you don't know about the size of his hands. They are massive. We call them his paws. I have a picture from high school where his hand is on my back and it looks like his one hand is covering my entire back. They are huge. As I looked at my parents my dad had both of his paws covering his face in shock and hurt (and tears! he is a big softy). My mother was crying. Big hurt filled tears. There are no words to describe the pain I know she was feeling. She is my mother. She makes my hurts better. This was a hurt she could not heal. Although her hugs and kisses certainly made my hurts a little better. After what must have been the second biggest shock of their lives (my parents lost a son at the age of 10 weeks in the 70's so I would think that is the biggest shock for them) my parents hugged us, told us they loved us and offered any and everything they have to help us on this journey and they left. My parents walked into our home living one life and with that one conversation they left our home on a much different path. We welcome them with open arms on this walk.
After they left it was time to make a skype call that we wish we never had to make. Jason is from England. We met online, had a whirlwind, "world" wind for us ;) romance, decided to get married and I imported him to this country so we could live happily ever after. So, obviously, his parents are still in England. We skyped them and started to tell them the news. We went through the same spiel we had just given my parents and again with the looks. Theirs were different but the same, if that makes any sense. See, the one word I would use for Jason's parents was stoic, especially his dad. They wanted to be strong for their son. But, their eyes told a much different story. Jason's mother was visibly upset. Women are like that. You could see her eyes start to get red and filled with pain. His dad's eyes told the story of a man who had just been punched in the gut and might not recover. They witnessed Jason break down and I think that's why they were trying so hard to be strong but you could see their pain. Because, just like with my parents, this matters to them! This is their grandson too. And just the same as my parents, I know they wanted to take away their son's pain. I know they wanted to be in the room with us so they could hug him and kiss him and make it all better. But what do you say? What could you possibly say to make this revelation any easier for your child? I would say they were..... Speechless is the word that comes to mind. It seems everyone leaves the "hey our son has HLHS" conversation speechless. His parents were no different. Again, like my parents, they offered everything in their power. Even reminding us that we may be an ocean apart but they could and would be here at the drop of a hat. Or rather, as quickly as a plane could get them here, but they are willing and able to take the next flight when/if something comes up.
It's amazing how your world changes with just one phone call. We were so sorry to have to change the direction of our parents journey but we are so thankful for having such strong individuals on this walk with us. Each parent bringing something different and wonderful on this trip.
Saturday, October 12, 2013
Georgia and her Baby Brother
Have a mentioned how excited Georgia really is about Baby Brother? She is constantly asking about him, wanting to feel him, kissing my belly, trying to see if he will kick, singing to him and most of all she is so incredibly concerned about him. We try so very hard to keep the information at a minimum because, really, who needs a stressed out 4 year old?? She knows *something* is going on with him and it has to do with his heart but, of course, she doesn't really know all the details.
If you can see it she added smiles to both me and Baby Brother. She said Mommy always smiles and she thinks Baby Brother is happy too and smiling in my belly.
Today we are getting ready for some visitors. My mother-in-law and niece, Piper, are coming for a week. They will be here Friday. I won't go into too much detail about my in-laws in this post because they really deserve a post of their own. They really are that special. Jason and I are so lucky to have been blessed with families that truly love and care for us. Anyway, we are getting ready. We are cleaning and washing laundry and painting (yes, finally painting Christian's room!).
I was at the computer taking a break when Georgia comes in and asks me how Baby Brother gets blood from me. (this was a part of the conversation with her Daddy about what makes Baby Brother safe right now) So I drew a picture. And let me tell you I am a HORRIBLE artist. Actually, to even use the term artist is an insult to even the amaetur drawing community. I stink! But I drew a picture of me and Baby Brother in my belly and explained how Baby Brother is getting lots of stuff from Mommy through the umbilical cord. I even pointed out on her cute little belly her belly button and said that's where Georgia was connected to Mommy when she was in my belly. She looked at the picture I drew and got her pencil to add something she thought was missing.
I just can't say enough about her sweet spirit and what a blessing her outlook on life has meant to me. Especially during these difficult times. I sure do hope Baby Brother is happy. I'm sure he is just knowing how much Big Sister loves him and can't wait to meet him.
Friday, October 11, 2013
Those Tender Moments
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.
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.
Thursday, October 10, 2013
Finally Some Good News......
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.
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.
Wednesday, October 9, 2013
Baby Brother's Daddy
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.
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.
Tuesday, October 8, 2013
Hypoplastic Left Heart Syndrome (HLHS)
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.
Pediatric Cardiologist
Those were the longest three days of my life. The waiting is horrible.
Jason and I arrived at Wolfson's Hospital and checked in. They were a little surprised to be checking in an adult female to the Children's Hospital but things started to make more sense once they realized the child was still in my belly. The guy that checked me in was named Michael Jackson. I swear you can't make this stuff up. Once checked in we waited. It didn't take long for the nurse to come get us and walked us through to the Children's Heart Hospital part of Wolfson's. We went into the office and filled out paperwork and then Ruby took us to the ultrasound room. We told her about the experience with the ROC and how hard it was to get measurements. Secretly I was hoping she would reassure me everything looked good and it must have just been a problem with ROC. Instead she said "The ROC is usually pretty good about these kinds of things". Hey Ruby ~ Thanks for the punch in the gut! It's bad enough I'm in a pediatric cardiologist office and now you have to go crushing my hopes. I have the fortunate ability to see both sides so I can imagine in her mind she was preparing me for what she must have already seen on the monitor. After all she does this all day and would be able to tell fairly quickly if and where the problem was.
This was another very long ultrasound. Probably not as long as the one at the ROC but almost. I said it before last time, it's fun getting to see your baby but after a while you are ready to stop being looked over. So she scanned and we talked. We talked about all kinds of things but I kept coming back to "we're so hopeful everything will be ok". Jason was quite. I think after the first 30 minutes he got a little bored and started playing a game on his phone.
From what I could see everything looked ok. There were 4 chambers and it appeared blood was flowing through his heart. I'm not ultrasound tech but I was ready to declare my baby fit and healthy. Finally the ultrasound was done and Ruby asked us to wait for the doctor. I hoped we were waiting for good news. About 5 minutes later in walks this young, petite, very cute long blonde haired woman who introduced herself as Dr. Lacey. I think Dr. Lacey is younger than me!
After she introduced herself she said "the ROC seems to think your baby is having a heart issue and I agree. But I think it's more severe than they thought." Wait! What? Did she really just say that? She was armed with pictures and proceeded to show us a "healthy" heart and then showed us a drawing of our baby's heart. All I could see was our baby's heart seemed to be a little smaller in some areas. The next words out of her mouth will live with me forever...
Hypoplastic Left Heart Syndrome
The rest of the conversation was a blur. Jason seemed to be paying much more attention than me. I couldn't even see straight. She explained (from what Jason tells me) our baby's lower left chamber is underdeveloped. It isn't pumping blood properly. This is the chamber that pumps oxygenated blood from the heart to the lungs and brain. This is, like all the rest of them really, a very important piece of the heart puzzle. So many more things she said. Lots of abbreviations. Lots of letters that I still don't understand. At one point Jason had to stop the conversation for a glass of water and to lie down. He literally almost passed out when Dr. Lacey was going over everything.
So, what does this all mean? Dr. Lacey gave us 3 options.
1. Do nothing. If we choose this option Baby Brother will die within the first couple days to weeks of life. So really this is NOT an option. Next please!
2. Put Baby Brother on a heart transplant list. They will keep him alive on IV medicines until a newborn heart becomes available. There is no time frame as basically we would be waiting for another newborn to die. This option makes my heart hurt almost as much as learning my son has a heart problem.
3. A serious of open heart surgeries. 3 parts. The first surgery to take place within 10 days of birth. Could be as early as the day after birth but no more than 10 days after birth. Again, they will keep him alive through IV medicine and then perform the surgery. If all goes well Baby Brother will come home in approx. 6 weeks. That is from surgery. So if surgery happens a week later we are looking at 7 weeks. Then he will need another surgery around 6 months and the final one around 3 years. This is the option we chose.
These surgeries will "Mend His Heart" and in no way heal him or make him whole. He will still need a transplant as he gets older. But the possibilities are so much better for him as an adult receiving a transplant.
We are so scared about this journey and what it means for our family. We've never sat back and asked "Why?" it just doesn't seem to matter why. But I heard a quote at conference this weekend that made me ponder the "Why" of it all. Pres. Eyring recounted a story of a grandmother and her grandson. She was a spiritual giant and the boy decided on a life of crime. On her way to visit him in prison she found herself asking "Why Me?" and said she heard the answer. Simply said she heard the Lord say
"I sent him to you because I knew you could and would love him no matter what"
This is "why" we are being blessed with this little guy. Because we can and will love him. No matter what!
Monday, October 7, 2013
September 23, 2013
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.
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.
Sunday, October 6, 2013
Before September 23, 2013
Jason and I found out on May 13th of this year we were expecting Baby #3. At first we were filled with SHOCK! Neither one of us were expecting this kind of news but once the shock wore off we were elated. A new baby. The smells. The giggles. The littleness. The love. We are looking forward to so much of that and more!
My first doctor's appointment was uneventful. They confirmed a due date of January 12, 2014 and gave me some prenatals and that was about it. One thing that did come from this appointment was the fact I am over the age of 35 so that classifies me as having an "advanced maternal age" and with a previous preemie (my oldest, Christian, was born 2 months early due to preeclampsia and weighed in at a whopping 2 pounds 6 ounces) they referred me to a specialist for a Level II Ultrasound. August 12, 2013 we went for our ultrasound and they confirmed we were having a BOY! I cried tears of joy and our daughter, Georgia (4), was sooooo excited. She has been referring to him as Baby Brother ever since. Baby Brother was quite the mover and shaker during this ultrasound but they were able to get what they needed and everything was great. They scheduled me for a follow-up for 6 weeks later to make sure Baby Brother was progressing as he should and they scheduled that appointment for September 23rd. The next six weeks flew by and Baby Brother was hitting every milestone. During the August 12th appointment they confirmed Baby Brother had an anterior placenta and that's why I wasn't feeling him as much. Basically he was behind the placenta so most of his kicks were going into that instead of me. I stupidly complained about this because I was so anxious to feel him. Let me tell you, I should have been enjoying that! This little stinker can really kick! Now that he's bigger I'm wondering if he's going to play soccer for his Daddy's beloved England! I think he's that good already.
As a mother I have had so many thoughts and dreams about this little guy. I want to register him for things I was never able to do with Christian. Football, Baseball, Soccer, whatever he wants to do. As a single mom to Christian I was always working and never had the opportunity to take him to practices as they were during the work day but I longed to have him on a field somewhere. I can't wait to get Georgia into dance and gymnastics and even cheerleading. Some of the things I enjoyed as a little girl. I can't wait to take Baby Brother to England to show him off to his Daddy's family. He is the first biological grandson and will essentially carry on the David Clarkson family name. I couldn't be prouder to be the mother of the son who will carry on such a beautiful family name. I have imagined his graduation from college and being at the Marriott Marquis on draft night as my baby's name is called as the first overall pick. I have already felt the love that he will bring into our lives. So many hopes. So many dreams. And then September 23rd came......
My first doctor's appointment was uneventful. They confirmed a due date of January 12, 2014 and gave me some prenatals and that was about it. One thing that did come from this appointment was the fact I am over the age of 35 so that classifies me as having an "advanced maternal age" and with a previous preemie (my oldest, Christian, was born 2 months early due to preeclampsia and weighed in at a whopping 2 pounds 6 ounces) they referred me to a specialist for a Level II Ultrasound. August 12, 2013 we went for our ultrasound and they confirmed we were having a BOY! I cried tears of joy and our daughter, Georgia (4), was sooooo excited. She has been referring to him as Baby Brother ever since. Baby Brother was quite the mover and shaker during this ultrasound but they were able to get what they needed and everything was great. They scheduled me for a follow-up for 6 weeks later to make sure Baby Brother was progressing as he should and they scheduled that appointment for September 23rd. The next six weeks flew by and Baby Brother was hitting every milestone. During the August 12th appointment they confirmed Baby Brother had an anterior placenta and that's why I wasn't feeling him as much. Basically he was behind the placenta so most of his kicks were going into that instead of me. I stupidly complained about this because I was so anxious to feel him. Let me tell you, I should have been enjoying that! This little stinker can really kick! Now that he's bigger I'm wondering if he's going to play soccer for his Daddy's beloved England! I think he's that good already.
As a mother I have had so many thoughts and dreams about this little guy. I want to register him for things I was never able to do with Christian. Football, Baseball, Soccer, whatever he wants to do. As a single mom to Christian I was always working and never had the opportunity to take him to practices as they were during the work day but I longed to have him on a field somewhere. I can't wait to get Georgia into dance and gymnastics and even cheerleading. Some of the things I enjoyed as a little girl. I can't wait to take Baby Brother to England to show him off to his Daddy's family. He is the first biological grandson and will essentially carry on the David Clarkson family name. I couldn't be prouder to be the mother of the son who will carry on such a beautiful family name. I have imagined his graduation from college and being at the Marriott Marquis on draft night as my baby's name is called as the first overall pick. I have already felt the love that he will bring into our lives. So many hopes. So many dreams. And then September 23rd came......
Subscribe to:
Posts (Atom)
About title
Facebook linl
search title
Archive title
