Tuesday, April 8, 2014
John H. Gullett
This blog was set up to chronicle our experience with James. His defect, bringing him into the world and our journey to give him the best life possible. In the middle of his second hospitalization I received a phone call no person ever wants to receive.
"Daddy's gone"
Those are the words that will live with me the rest of my life.
I still can't comprehend my Dad being gone from this world. He was larger than life in every possible way. A big man with a big spirit.
I was honored to give his eulogy and would like to include it here. Some things I said from the pulpit and I may not remember them but here is what I said:
First I want to thank everyone for coming and supporting our family today. It really means the world to us.
I was asked to give his eulogy and had a really hard time. How do I put into words everything this man was to me?
Big John Gullett was born October 26, 1952 in Columbus, Ohio to James and Ethel Gullett. He was the second son and joined sisters Bertha and Judy and brother James the second. Not long after Jason and Jasper joined the family. As a young boy Daddy got sick quite a bit with strep throat and was in and out of the hospital. After a vacation to Jacksonville Beach my Pappaw decided he was moving his family to the warmer climate. No more Ohio snow for him and his family. So they sold their farm and settled into Jax Beach.
And while that's the story of his beginning my dad would be the first to tell you his life real began on the regular school day at Andrew Jackson High School in 1970 when a cute little redhead crossed his path. At one point we had a family newsletter and one month the family stories were "How We Met" so I'd like to read directly from that. My mother wrote:
"I remember sitting in my English class, which was the last period of the day, when a friend of mine who was sitting behind me said, 'Faye, you are being starred at'. I said, 'Not me!' I looked out the door and saw two guys looking through the glass in the door. I told her that they weren't starring at me. I didn't know either one of them.
After class was over I was walking down the hall to my locker when I head this voice say 'That's the one, that's the one I'm going to marry'. I looked at my reflection in the windows and saw John and his friend that was with him. I thought boy is he crazy! As I approached my locker this big guy stopped and asked me if I had any good books to read. I said 'yes, D-Day'. He told me if I gave him my phone number that he would shake up the phone tonight. I gave him my phone number and he asked me out. I told him no I couldn't date on a school night. I really was afraid to ask my dad. He didn't like us on the phone, much less going out. He asked me out several times and I kept saying no.
One day he told me he was going to Orlando to see his sister and if I gave him my address he would bring me back some oranges. I told him never mind, I didn't need any oranges. Well, he went to Orlando but didn't come back to school for a week. I guess I missed him not chasing me around anymore. At the end of the week I saw him on the second floor talking to another girl. That got my attention. Then I began to realize I really did like this big hairy guy. I guess I had missed him and didn't like seeing him with another girl.
I believe that it was a Saturday, my brother and I were going to a movie. His girlfriend lived about 3 blocks from John so I asked my brother if I could go down and see if John wanted to go with us to the movie. He said ok. I walked to his Dad and Mom's store but he wasn't there. As I was leaving he drove up in his Dad's '67 pick up truck. He looked so fine! He came up to me and I told him about going to the movie. He said he wanted to go and took me inside the store to introduce me to his parents. I walked over to his house to wait for him to take a shower and get dressed. He was in and out in 3 minutes! I was shocked! I guess he was excited. We went to the drive in movie and then to the beach. One the way back he kissed me and told me 'I think I love you'. I kissed him back and said 'I think I love you, too'. He was and still is a great kisser."
September 6, 1970 Big John made that cute little redhead his wife. Being married to his high school sweetheart wasn't enough for them so in 1971 they welcomed a beautiful baby boy. John the second. Daddy's pride and joy. Being a young husband and father wasn't easy but he worked hard to provide for his little family, a trait he carried on throughout his life and one he instilled in his children. 4 years later in September of 1975 Cassie Renee was born. He was so excited about a daughter that he would walk through the courthouse singing "Cassie Renee was born today". 2 years later in April 1978 Joshua Haney joined the crew. And 10 very short weeks after that Josh passed away. This was a blow to their hearts that to this day has never healed. They thought they were done with their family. But anyone that knows Casey knows she loves a party, especially a surprise party so in August of 1979 Casey Rebecca danced her way into their lives. In June of 1983 Mom and Dad were leaving to go to the hospital for #5 when Johnny "politely" told them "gain a son or lose a son!" Guess he was a little tired of us sisters. Luckily for Johnny, Joseph Hyrum made his grand entrance and his made his presence known ever since.
After working hard to provide for his growing family he noticed that "these guys in the title business must be making a lot of money" so at 21 years old he opened his first title company and a legacy was born. He wasn't happy just having a title company. He went on to teach his entire family about the title business.
He was a faithful member of The Church of Jesus Christ of Later-Day Saints. He had a strong unwavering testimony of Jesus Christ and his infinite Atonement. He enjoyed the temple and in October of 1978 he took his family to the Washington D.C. temple to be sealed. He served in many capacities. As a young men's president he had a young man not coming to church so he gathered all the young men on a Sunday and went to pick up that boy. That boy went on to become young men's president of that same ward. He loved serving everyone around him. He was a faithful priesthood holder and presided over our family. He baptized us and bestowed the priesthood to his sons, sons in-law and grandson.
He taught us many useful things. He taught us that if you are driving slightly above speed limit in your van while your spouse is asleep on the fold out couch in the back and you hit a railroad crossing at just the right angle, said spouse, in their sleep, will end up hovering over the bed while the van flies through the air. And when they hit back down and is awoken there will be a fight and therefore an opportunity to ask for forgiveness. Daddy taught us forgiveness in all things. Move forward. Don't linger on bad thoughts or feelings. It doesn't do anyone any good. Daddy was not one for grudges.
My dad taught me that even if you try really hard you will never get a Ford Extra Long Econoline van with a trailer on the back to go down Lombard Street in San Francisco without running over the perfectly manicured streets. He taught me he would always be my protector as I was scared to death of riding my first roller coaster and he said "don't worry, nobody's died on this all week." From my dad I learned about silver linings. To laugh. To find joy in everyday life. To wake each morning and make it a great day. He taught us every moment can be a teachable moment and everything that happens, good, bad or ugly, are just memories being made. That the knowledge you gain and the memories you make are going to be the only things you can take with you. He taught us family is the most important thing. He taught us how to love our spouse. If you were to open my dad's wallet you will find a picture of my mother from high school. That man is hopelessly in love with my mother.
Life in the Gullett home was never boring. Daddy was quite the prankster. I remember one year for April Fool's he told us we were moving to California. Johnny was so excited. We got all the way to the airport and were walking in when he finally said "April Fool's!" Johnny was not amused.
He was silly. The other day Jason and Georgia were on the way home when Georgia said "Pappaw has funny spiders at his house". Jason asked her what kind of spiders and she said she couldn't remember the name but the made a {insert farting noise here} sound. My husband asked "do you mean barking spiders?" Yes! She said. Barking spiders! This was his name for passing gas. He would say "did you hear that? that was a barking spider!"
Growing up with him as a sibling was also pretty fun. Uncle Jason said after dad got done with working on his car they took it to the Krystal's for crusin. As they were crusin through the steering wheel from Dad's car came right off. Without missing a beat he handed the steering wheel to my Uncle Jason and with his big smile said "here, you drive."
Family was the absolute most important thing to him. My mother was always first. We kids were second and then he became a proud Pappaw. He loved his grandkids so very much. He enjoyed each one for their unique personalities. At birth he had shirts made representing each one. He would wear them to the hospital the day they were born, the day they went home and every birthday. He even wore them to the graduation of some of the older grandkids. They are each wearing their shirts today to honor him. He found so much joy in being their Pappaw.
Besides our mother, his kids and grandkids he loved classic cars, motorcycles, traveling, sports, the Gators, going to Jaguar games with his kids and redheads.
My mother always said choose carefully the father of your children. She chose wisely for us. I know I speak for all of is when I saw how honored I am to be the child of this great man. Thank you mom for picking the man perfect for us.
I leave these thoughts with you in Jesus name, Amen.
Labels:
Eulogy,
Gullett,
John,
Pappaw
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Monday, March 31, 2014
After birth
The problem with blogging, or more accurately NOT blogging, is you get used to not blogging and then you have so much time to make up.
The last I blogged James was born. Today he is in his swing in our den at home sleeping. How did we get from birth with a breathing tube to the swing? Lots of blanks for me to fill. And I will. I hope you can bear with me. I want everyone to know his journey.
Once James was born all the doctors did their assessments and tests and determined him to be in good health, minus a small little life threatening heart defect ;).
Jason and I were thrust into a whole new world that we thought we were prepared for but you realize quickly how unprepared you really are. We learned about oxygen saturation percentages and heart rates and flow vs. liters and versed (and I'm not sure if that's how you really spell it).
During this initial assessment an echocardiogram was done and found James to NOT have Hypoplastic Left Heart if you can believe that! His left side was small but it was pumping! He was downgraded to critical aortic stenosis with a hypoplastic aortic arch. What does that mean exactly? Well, I don't know. Not exactly. But I got the jest of it. Aortic stenosis and mitral valve stenosis are the beginning factors of HLHS. Since James's mitral valve was not as bad as they originally thought. He still had many issues. When I say he was downgraded this isn't to mean he was ok by any stretch of the imagination. But now we had a few different options. We could continue on with the Norwood or we could try for a catheterization procedure to balloon open the aortic arch which would hopefully allow more blood flow through the arch and therefore allow the left ventricle to grow and keep him a two ventricle baby. Any time you can keep a child a two ventricle baby this is obviously the preferred method. But would Baby Brother be a good candidate for this procedure? The doctors would discuss it at Cath Conference on the next Monday morning.
I spent the weekend being wheeled between my room and James' room. Jason slept at James' bedside the entire time except for one night when my sister slept in the room with him. We got a room at the Ronald McDonald House and when I was released on Sunday I tried to settle in.
All of our family left by Sunday except for Jason's mom. She stayed with me. The plan was for her to stay with me the first week and my father in law to go back with Jason which would help Jason get the kids to and from school and just generally help out. They would come back the next weekend at which point they would all go back leaving me alone but only for a day or two when my in laws would be back for another couple of days before they had to leave to go back to England. They would leave on Thursday and Jason and the kids would come back on Friday and then my mom would come and spend week 3 with me. This would get me through the first surgery and some recovery time before having to be alone.
Monday morning at Cath Conference they decided James was a good candidate for the valvuloplasty of the aortic valve.
So James would go to the Cath Lab on Tuesday, January 7th.
The last I blogged James was born. Today he is in his swing in our den at home sleeping. How did we get from birth with a breathing tube to the swing? Lots of blanks for me to fill. And I will. I hope you can bear with me. I want everyone to know his journey.
Once James was born all the doctors did their assessments and tests and determined him to be in good health, minus a small little life threatening heart defect ;).
Jason and I were thrust into a whole new world that we thought we were prepared for but you realize quickly how unprepared you really are. We learned about oxygen saturation percentages and heart rates and flow vs. liters and versed (and I'm not sure if that's how you really spell it).
During this initial assessment an echocardiogram was done and found James to NOT have Hypoplastic Left Heart if you can believe that! His left side was small but it was pumping! He was downgraded to critical aortic stenosis with a hypoplastic aortic arch. What does that mean exactly? Well, I don't know. Not exactly. But I got the jest of it. Aortic stenosis and mitral valve stenosis are the beginning factors of HLHS. Since James's mitral valve was not as bad as they originally thought. He still had many issues. When I say he was downgraded this isn't to mean he was ok by any stretch of the imagination. But now we had a few different options. We could continue on with the Norwood or we could try for a catheterization procedure to balloon open the aortic arch which would hopefully allow more blood flow through the arch and therefore allow the left ventricle to grow and keep him a two ventricle baby. Any time you can keep a child a two ventricle baby this is obviously the preferred method. But would Baby Brother be a good candidate for this procedure? The doctors would discuss it at Cath Conference on the next Monday morning.
I spent the weekend being wheeled between my room and James' room. Jason slept at James' bedside the entire time except for one night when my sister slept in the room with him. We got a room at the Ronald McDonald House and when I was released on Sunday I tried to settle in.
All of our family left by Sunday except for Jason's mom. She stayed with me. The plan was for her to stay with me the first week and my father in law to go back with Jason which would help Jason get the kids to and from school and just generally help out. They would come back the next weekend at which point they would all go back leaving me alone but only for a day or two when my in laws would be back for another couple of days before they had to leave to go back to England. They would leave on Thursday and Jason and the kids would come back on Friday and then my mom would come and spend week 3 with me. This would get me through the first surgery and some recovery time before having to be alone.
Monday morning at Cath Conference they decided James was a good candidate for the valvuloplasty of the aortic valve.
So James would go to the Cath Lab on Tuesday, January 7th.
Labels:
ACH,
Baby Brother,
CHD,
HLHS,
James,
Jason,
stenosis
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Thursday, January 9, 2014
James David Clarkson
One week ago today James David Clarkson entered this world kicking and screaming!
I was taken into the surgery room and given my spinal and ready for baby to come. It was a normal surgical room with one difference. In the left corner of the room was a smaller room. Not much bigger than a walk in closet. In that room were a couple of people and a hospital room on wheels.
I was more terrified than I had ever been in my life. I have been through some pretty weird things in my life and some of them quite scary but this was more than I could emotionally handle. I cried many tears before walking into that surgical room. I knew as long as my baby was in my belly he was fine. I knew as soon as he came out the real struggle would begin. Would there even be a struggle? Is my baby as sick as Wolfson's says he will be? Would I ever hold him? See him take an actual breath? Hear him cry? Would I ever see his chest move up and down taking breaths? Would my baby be OK?
I remember people talking and buzzing around. It seemed to be taking forever. Then I heard the doctor say "Wow he's a big boy!" Jason popped up in the chair and looked over the sheet but James hadn't been pulled out yet. Then I felt them take him out of me. It was weird really. Almost like he didn't want to leave but was being forced out by suction.
Then I heard it. I heard him cry. I heard that sweet little voice I knew instantly belonged to my baby. If he can scream then his lungs are functioning! Jason popped up again and said "he looks bigger than Georgia was!" And then the most beautiful thing I've seen in a long time. A tiny little scrunched up face over the sheet. Only a couple of seconds but there he was. My sweet baby James. Crying! They took him down and got him over to the ICU team to start their part. One of them yelled from the little room "He's turning pink!" Turning pink means oxygenated blood was getting to his body. Something that happens in normal everyday babies. Not always the norm for Hypoplastic Left Heart babies. This was more good news!
Jason followed our son into the room and came back to tell me James was 7 pounds 14 ounces and I smiled. They wanted a big baby and that's almost 8 pounds so I thought I held up my end of the bargain. I looked at Jason and said "7.14?" and he said "No! 9 pounds 14 ounces!" What??? I just delivered an almost 10 pound baby? Holy cow! Jason just laughed and said yeah, 10 pounds! This, by the way, is his idea of a joke. He tried to tell me Georgia was a boy but he didn't realize the doctor had already said she was a girl. This time he got me.
Jason followed the team to the Cardiovascular Intensive Care Unit. They stopped by my head on the way out of the room so I could see him and see that he was calmed and stable. He did have a breathing tube which isn't great but it wasn't horrible either. He was alive. He was breathing. He was pink.
I haven't heard his sweet little voice since. The breathing tube makes it where he can't vocalize but hopefully soon it will be removed and we will be able to hear that sweet voice again.
I was taken into the surgery room and given my spinal and ready for baby to come. It was a normal surgical room with one difference. In the left corner of the room was a smaller room. Not much bigger than a walk in closet. In that room were a couple of people and a hospital room on wheels.
I was more terrified than I had ever been in my life. I have been through some pretty weird things in my life and some of them quite scary but this was more than I could emotionally handle. I cried many tears before walking into that surgical room. I knew as long as my baby was in my belly he was fine. I knew as soon as he came out the real struggle would begin. Would there even be a struggle? Is my baby as sick as Wolfson's says he will be? Would I ever hold him? See him take an actual breath? Hear him cry? Would I ever see his chest move up and down taking breaths? Would my baby be OK?
I remember people talking and buzzing around. It seemed to be taking forever. Then I heard the doctor say "Wow he's a big boy!" Jason popped up in the chair and looked over the sheet but James hadn't been pulled out yet. Then I felt them take him out of me. It was weird really. Almost like he didn't want to leave but was being forced out by suction.
Then I heard it. I heard him cry. I heard that sweet little voice I knew instantly belonged to my baby. If he can scream then his lungs are functioning! Jason popped up again and said "he looks bigger than Georgia was!" And then the most beautiful thing I've seen in a long time. A tiny little scrunched up face over the sheet. Only a couple of seconds but there he was. My sweet baby James. Crying! They took him down and got him over to the ICU team to start their part. One of them yelled from the little room "He's turning pink!" Turning pink means oxygenated blood was getting to his body. Something that happens in normal everyday babies. Not always the norm for Hypoplastic Left Heart babies. This was more good news!
Jason followed our son into the room and came back to tell me James was 7 pounds 14 ounces and I smiled. They wanted a big baby and that's almost 8 pounds so I thought I held up my end of the bargain. I looked at Jason and said "7.14?" and he said "No! 9 pounds 14 ounces!" What??? I just delivered an almost 10 pound baby? Holy cow! Jason just laughed and said yeah, 10 pounds! This, by the way, is his idea of a joke. He tried to tell me Georgia was a boy but he didn't realize the doctor had already said she was a girl. This time he got me.
Jason followed the team to the Cardiovascular Intensive Care Unit. They stopped by my head on the way out of the room so I could see him and see that he was calmed and stable. He did have a breathing tube which isn't great but it wasn't horrible either. He was alive. He was breathing. He was pink.
I haven't heard his sweet little voice since. The breathing tube makes it where he can't vocalize but hopefully soon it will be removed and we will be able to hear that sweet voice again.
Labels:
Baby Brother,
Cassie,
HLHS,
James,
Jason
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1 comments
Monday, December 30, 2013
Another Hospital Tour
What a difference a hospital makes.
Thursday morning, December 12th, my sister and her kids came to pick up Georgia and me and we once again started the trek down to the Tampa area. I had an appointment with the Maternal Fetal Medicine doctor who would be delivering Baby Brother. Kathy Arnold, the Perinatal Cardiology Nurse Coordinator, asked if I could be at the hospital a little early so she could give me the tour of the facility.
We were driving and our exit came up and we turned off the interstate to find ourselves staring at a beautiful hospital facility. At the top said "All Children's Hospital" and underneath that "Johns Hopkins Medicine". Yeah, did I forget to mention ACH is a Johns Hopkins Hospital?? We pulled into the Outpatient center and I went in to find Kathy. My sister took the kids to play at a nearby museum while I did my thing.
Kathy is a sweet woman. Probably a little younger than my parents. All smiles and ready to show me around. She showed me where I would be delivering. I couldn't tour the facility because they didn't have any open rooms but she showed me as much as she could. Then she took me to the Cardiovascular Intensive Care Unit. See, at ACH my son will not go to the NICU. Since he is a heart baby he will go straight to the CVICU. Wolfson's doesn't have a CVICU. Just a NICU and PICU. ACH has all the above. I met the nurse in charge of the CVICU and she was very nice and welcoming and showed me the kind of room Baby Brother would have. It has everything. It really is something.
We went to the milk depot. ACH has a department strictly devoted to breastmilk. They give me the bottles and the pump (I have my own so I can use mine but they will still give me the bottles and connections) and some barcode stickers and they take care of the rest. I pump, put the barcode on the bottle, take to them and they do the rest. They date it, rotate it appropriately, thaw it the right way. Dispense it when it's feeding time. The whole nine yards. A CVICU nurse orders the milk, the milk depot gets it prepared and lots of barcode scanning later (to make sure my son gets my milk and no one else's) my son is fed. Kathy also said as long as I'm breastfeeding the hospital will provide my meals. They take breastfeeding so seriously and want me to get the necessary nutrition that they will give me meals from the cafeteria for free as long as I'm pumping. Even if it's only an ounce a day.
Kathy then took me to the NICU just simply because that's where the transport bed is kept. She wanted me to see what Baby Brother will be transported in from the delivery room to the CVICU. Here's another glaring difference between Wolfson's and ACH. At Wolfson's the surgery rooms are positioned around the NICU so basically I would deliver and then they would take him through a door and they would be in the NICU. Once in the NICU they would try to stabilize him. Once he is stable Jason would be able to go and visit and take pictures and he would be able to take 1 person at a time in with him to see the baby. At ACH Baby Brother will be stabilized, if necessary, right in the room with me by the Stork team. That's what they call the transportation team. So they get to working on him right away. They have everything necessary on that bed to make sure he is ok. It looked like a mini hospital room on wheels. Once he is able to be transported Jason essentially becomes part of the Stork team and goes with them to the CVICU and will not be asked to leave until Baby Brother is discharged. Now, if something happens and they need to take Baby Brother out to have a cath or something along those lines then Jason will not be able to go into the cath lab. The CVICU allows 4 people at a time to go in. So Jason can take 3 people at a time in to see our little guy. Including his sister! Georgia can only stay in the room for 30 minutes at a time but she is allowed to go in and meet her baby brother. After all, she is the one that named him that.
After the hospital tour I went to the delivering doctor's office and everything went great there. The nurse sat me in a room for a consultation and after asking me every personal question in the world, sexual partners, illegal drug use, and more things my mind has purposely blocked, she surprised me by saying "Can I ask you a personal question?" Uhhhh, you've asked me about my sexual partners and whether I've done illegal street drugs so what on earth could be more personal??? But of course I said "sure" and she asked "Is it true the story I heard about the doctors in Jacksonville? Because if it is I am appalled. Really. I cannot imagine a doctor anywhere telling you there was little to no hope and so they're just going to let you hold your baby until he dies. It is APPALLING!" I couldn't help but get a little teary eyed and I whispered "yes, it's true". She then went on to tell me how very sorry she was I ever had to go through that and there is no "give up" with the doctors at ACH.
If I haven't said it before let me state for the record - I am so pleased to have found Dr. Huhta, his staff, All Children's Hospital and the doctors and staff I have referred to through Dr. Huhta's office. It has been a truly blessed experience. Even the surgeons wanted to try and work me into their schedule on Thursday but when I was finally done with my appointments Dr. Q was still in surgery. He told his staff to make sure I knew he would be visiting with me as soon as I was able to have a visitor. Very humbling that this Doctor would try so hard to take time out of his schedule to meet me.
Oh - I almost forgot. In speaking with the delivering doctor and nurse they let me know I am one of 6 HLHS mothers they are about to deliver. Actually she said they currently have 5 not including me so I make that 1 out of 6 ;) This is something they are used to and have seen on many occasions and it simply doesn't scare them. They only deliver at ACH. So that means in the next month or two ACH will have 6 new HLHS babies. And through my heart network I already know 2 or 3 babies currently in the CVICU with HLHS. This is as routine for them as anything else.
I am truly amazed at the true power of prayer, fasting, the priesthood and the love of a mother and father unwilling to accept defeat.
Thursday morning, December 12th, my sister and her kids came to pick up Georgia and me and we once again started the trek down to the Tampa area. I had an appointment with the Maternal Fetal Medicine doctor who would be delivering Baby Brother. Kathy Arnold, the Perinatal Cardiology Nurse Coordinator, asked if I could be at the hospital a little early so she could give me the tour of the facility.
We were driving and our exit came up and we turned off the interstate to find ourselves staring at a beautiful hospital facility. At the top said "All Children's Hospital" and underneath that "Johns Hopkins Medicine". Yeah, did I forget to mention ACH is a Johns Hopkins Hospital?? We pulled into the Outpatient center and I went in to find Kathy. My sister took the kids to play at a nearby museum while I did my thing.
Kathy is a sweet woman. Probably a little younger than my parents. All smiles and ready to show me around. She showed me where I would be delivering. I couldn't tour the facility because they didn't have any open rooms but she showed me as much as she could. Then she took me to the Cardiovascular Intensive Care Unit. See, at ACH my son will not go to the NICU. Since he is a heart baby he will go straight to the CVICU. Wolfson's doesn't have a CVICU. Just a NICU and PICU. ACH has all the above. I met the nurse in charge of the CVICU and she was very nice and welcoming and showed me the kind of room Baby Brother would have. It has everything. It really is something.
We went to the milk depot. ACH has a department strictly devoted to breastmilk. They give me the bottles and the pump (I have my own so I can use mine but they will still give me the bottles and connections) and some barcode stickers and they take care of the rest. I pump, put the barcode on the bottle, take to them and they do the rest. They date it, rotate it appropriately, thaw it the right way. Dispense it when it's feeding time. The whole nine yards. A CVICU nurse orders the milk, the milk depot gets it prepared and lots of barcode scanning later (to make sure my son gets my milk and no one else's) my son is fed. Kathy also said as long as I'm breastfeeding the hospital will provide my meals. They take breastfeeding so seriously and want me to get the necessary nutrition that they will give me meals from the cafeteria for free as long as I'm pumping. Even if it's only an ounce a day.
Kathy then took me to the NICU just simply because that's where the transport bed is kept. She wanted me to see what Baby Brother will be transported in from the delivery room to the CVICU. Here's another glaring difference between Wolfson's and ACH. At Wolfson's the surgery rooms are positioned around the NICU so basically I would deliver and then they would take him through a door and they would be in the NICU. Once in the NICU they would try to stabilize him. Once he is stable Jason would be able to go and visit and take pictures and he would be able to take 1 person at a time in with him to see the baby. At ACH Baby Brother will be stabilized, if necessary, right in the room with me by the Stork team. That's what they call the transportation team. So they get to working on him right away. They have everything necessary on that bed to make sure he is ok. It looked like a mini hospital room on wheels. Once he is able to be transported Jason essentially becomes part of the Stork team and goes with them to the CVICU and will not be asked to leave until Baby Brother is discharged. Now, if something happens and they need to take Baby Brother out to have a cath or something along those lines then Jason will not be able to go into the cath lab. The CVICU allows 4 people at a time to go in. So Jason can take 3 people at a time in to see our little guy. Including his sister! Georgia can only stay in the room for 30 minutes at a time but she is allowed to go in and meet her baby brother. After all, she is the one that named him that.
After the hospital tour I went to the delivering doctor's office and everything went great there. The nurse sat me in a room for a consultation and after asking me every personal question in the world, sexual partners, illegal drug use, and more things my mind has purposely blocked, she surprised me by saying "Can I ask you a personal question?" Uhhhh, you've asked me about my sexual partners and whether I've done illegal street drugs so what on earth could be more personal??? But of course I said "sure" and she asked "Is it true the story I heard about the doctors in Jacksonville? Because if it is I am appalled. Really. I cannot imagine a doctor anywhere telling you there was little to no hope and so they're just going to let you hold your baby until he dies. It is APPALLING!" I couldn't help but get a little teary eyed and I whispered "yes, it's true". She then went on to tell me how very sorry she was I ever had to go through that and there is no "give up" with the doctors at ACH.
If I haven't said it before let me state for the record - I am so pleased to have found Dr. Huhta, his staff, All Children's Hospital and the doctors and staff I have referred to through Dr. Huhta's office. It has been a truly blessed experience. Even the surgeons wanted to try and work me into their schedule on Thursday but when I was finally done with my appointments Dr. Q was still in surgery. He told his staff to make sure I knew he would be visiting with me as soon as I was able to have a visitor. Very humbling that this Doctor would try so hard to take time out of his schedule to meet me.
Oh - I almost forgot. In speaking with the delivering doctor and nurse they let me know I am one of 6 HLHS mothers they are about to deliver. Actually she said they currently have 5 not including me so I make that 1 out of 6 ;) This is something they are used to and have seen on many occasions and it simply doesn't scare them. They only deliver at ACH. So that means in the next month or two ACH will have 6 new HLHS babies. And through my heart network I already know 2 or 3 babies currently in the CVICU with HLHS. This is as routine for them as anything else.
I am truly amazed at the true power of prayer, fasting, the priesthood and the love of a mother and father unwilling to accept defeat.
Labels:
ACH,
Baby Brother,
Cassie,
HLHS,
Huhta,
Jason
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Monday, December 16, 2013
Fetal Clinic
Friday (two days after my appointment with Dr. Huhta) found me at Fetal Clinic at Wolfson's. Fetal Clinic is where I was to go in and tour the NICU, PICU and meet the surgeons who will be performing the HLHS series of surgeries. I got to the hospital at 8 am and was scanned by an ultrasound tech. Dr. Lacey isn't in on Fridays so I had to wait until Monday for her to call me with the results of the scan. After the scan Dr. Ettedgui came in to speak to me. He is the doctor from the cath lab that will be performing the atrial septostomy. I took lots of notes and when we were done I realized I had three pages of negativity.
"The collective experience suggests the outcome is dismal"
"We don't want pain and discomfort for your baby if the procedures will prove to be fruitless"
"Babies will declare themselves non-survivors and that's when we administer comfort measures only"
"IF baby is stable for a few hours then the atrial septostomy is not unrealistic"
"Odds are stacked against you and your baby"
"There are all sorts of potential for bad outcomes"
"You have a very very high risk baby"
There was more. It was painful to sit through. Not because he was talking about the difficulties Baby Brother would have but because I knew from two days ago that there are people out there who want to be optimistic about our son's options and his chances for survival. To have to listen to someone write your son off is just emotionally painful. I asked him about the procedure itself and what to expect from that and he explained how they do the septostomy and again, followed it up with all the danger and dismal outcomes. Jason actually asked me if I only wrote down the negative things this guy was saying and I laughed and said "No, I wrote down EVERYTHING he said". It was just bad news to more bad news. After that Dr. Kreiger came in to speak with me.
Dr. Kreiger is from PedsCare. Don't know what that is? Join the club! I didn't know either. Then she explained. PedsCare oversees the palliative care option. She is basically the "do nothing" overseer. So she took me to her office and gave me all sorts of information on comfort care measures. Even a birthplan that was all typed out with boxes to check for what we would want to do if this or that happened. I sat there almost in shock that I was meeting with her. Jason and I have been very adamant in our desire to do something and that doing nothing was not an option for us. So I sat, smiled and waited for her to finish. Once she was done I thanked her for her time and left. I went back to the Cardiology office and they called the Chaplain. The hospital chaplain does all the hospital tours. I guess they want you to be comfortable with him in case you need him.
Chaplain Fred came in and took me on the tour. He showed me the NICU and the PICU and tried to answer questions. He is obviously very loved at the hospital as everyone we passed either smiled very warmly or they said hello or they filled him in on whatever was going on. He seemed to know everyone and everyone knew him and it was enjoyable watching him in his element. Of all the people I met that day he was the most positive and sincere. He introduced me to another mother whose baby is a cardiac patient. She said her baby was diagnosed after delivery and she was grateful she didn't have to spend her pregnancy worried about him and what was going to happen. I can totally see her point. BUT if I didn't know ahead of time Baby Brother would surely die. So I guess it's really just preference. She was nice and praised the doctors at Wolfson's but that's probably because she didn't have to deal with them ahead of time! Sorry, I'm sure they are fantastic doctors. They just aren't prepared for our baby and what he wants to throw at them. So we were done there and Chaplain Fred told me I was free to go. I was confused as I hadn't met the surgeons yet so he took me back to the cardiology office to see what was going on.
Back in the cardiology office the secretary said I was free to go and I asked her about meeting the surgeons. The whole point of fetal clinic for me was to meet these guys, ask them my questions and try to see where they stand with things. The secretary asked the head tech if she knew why my meeting with the surgeons was cancelled and she said "oh yes". She said Dr. Lacey and the surgeons felt it would be better if they met with me after baby had the atrial septostomy and was stabilized. They felt the type of procedure may change after that so it's best not to confuse me with telling me one thing and then having to come back and tell me something different later on. I seriously could not believe what I was hearing. Knowing I wouldn't get anything else from these two, since they aren't doctors, I just smiled and left. As soon as I was in the parking garage I called Jason and I was ticked!
I said "Even though they didn't use these words what they basically just said to me was 'we don't think your Baby Brother is going to live past the cath lab so we aren't going to waste our time meeting with you'." Jason agreed with me. We were both livid. I don't care if the procedure may change. At least give me 2 minutes of your time to meet you before I consent to you cutting my baby's chest open and doing surgery on his heart! Is that too much to ask??
Up until this point Jason and I had been talking about delivering in St. Petersburg and what that means for our family. It isn't a decision we can take lightly. Needless to say this experience was definitely going in the cons list for Wolfson's. Here it is 10 days later and I am still upset by it!
Then I started getting phone calls from 727 area code numbers. All Children's Hospital has already made me appointments with a delivering doctor and to tour the facility.
"The collective experience suggests the outcome is dismal"
"We don't want pain and discomfort for your baby if the procedures will prove to be fruitless"
"Babies will declare themselves non-survivors and that's when we administer comfort measures only"
"IF baby is stable for a few hours then the atrial septostomy is not unrealistic"
"Odds are stacked against you and your baby"
"There are all sorts of potential for bad outcomes"
"You have a very very high risk baby"
There was more. It was painful to sit through. Not because he was talking about the difficulties Baby Brother would have but because I knew from two days ago that there are people out there who want to be optimistic about our son's options and his chances for survival. To have to listen to someone write your son off is just emotionally painful. I asked him about the procedure itself and what to expect from that and he explained how they do the septostomy and again, followed it up with all the danger and dismal outcomes. Jason actually asked me if I only wrote down the negative things this guy was saying and I laughed and said "No, I wrote down EVERYTHING he said". It was just bad news to more bad news. After that Dr. Kreiger came in to speak with me.
Dr. Kreiger is from PedsCare. Don't know what that is? Join the club! I didn't know either. Then she explained. PedsCare oversees the palliative care option. She is basically the "do nothing" overseer. So she took me to her office and gave me all sorts of information on comfort care measures. Even a birthplan that was all typed out with boxes to check for what we would want to do if this or that happened. I sat there almost in shock that I was meeting with her. Jason and I have been very adamant in our desire to do something and that doing nothing was not an option for us. So I sat, smiled and waited for her to finish. Once she was done I thanked her for her time and left. I went back to the Cardiology office and they called the Chaplain. The hospital chaplain does all the hospital tours. I guess they want you to be comfortable with him in case you need him.
Chaplain Fred came in and took me on the tour. He showed me the NICU and the PICU and tried to answer questions. He is obviously very loved at the hospital as everyone we passed either smiled very warmly or they said hello or they filled him in on whatever was going on. He seemed to know everyone and everyone knew him and it was enjoyable watching him in his element. Of all the people I met that day he was the most positive and sincere. He introduced me to another mother whose baby is a cardiac patient. She said her baby was diagnosed after delivery and she was grateful she didn't have to spend her pregnancy worried about him and what was going to happen. I can totally see her point. BUT if I didn't know ahead of time Baby Brother would surely die. So I guess it's really just preference. She was nice and praised the doctors at Wolfson's but that's probably because she didn't have to deal with them ahead of time! Sorry, I'm sure they are fantastic doctors. They just aren't prepared for our baby and what he wants to throw at them. So we were done there and Chaplain Fred told me I was free to go. I was confused as I hadn't met the surgeons yet so he took me back to the cardiology office to see what was going on.
Back in the cardiology office the secretary said I was free to go and I asked her about meeting the surgeons. The whole point of fetal clinic for me was to meet these guys, ask them my questions and try to see where they stand with things. The secretary asked the head tech if she knew why my meeting with the surgeons was cancelled and she said "oh yes". She said Dr. Lacey and the surgeons felt it would be better if they met with me after baby had the atrial septostomy and was stabilized. They felt the type of procedure may change after that so it's best not to confuse me with telling me one thing and then having to come back and tell me something different later on. I seriously could not believe what I was hearing. Knowing I wouldn't get anything else from these two, since they aren't doctors, I just smiled and left. As soon as I was in the parking garage I called Jason and I was ticked!
I said "Even though they didn't use these words what they basically just said to me was 'we don't think your Baby Brother is going to live past the cath lab so we aren't going to waste our time meeting with you'." Jason agreed with me. We were both livid. I don't care if the procedure may change. At least give me 2 minutes of your time to meet you before I consent to you cutting my baby's chest open and doing surgery on his heart! Is that too much to ask??
Up until this point Jason and I had been talking about delivering in St. Petersburg and what that means for our family. It isn't a decision we can take lightly. Needless to say this experience was definitely going in the cons list for Wolfson's. Here it is 10 days later and I am still upset by it!
Then I started getting phone calls from 727 area code numbers. All Children's Hospital has already made me appointments with a delivering doctor and to tour the facility.
Labels:
atrial septum,
Baby Brother,
Cassie,
Dr. Lacey,
HLHS,
Jason,
Questions
|
1 comments
Tuesday, December 10, 2013
Hope Springs Eternal
I had the worst night's sleep on Tuesday night. I tossed and turned all night long. I guess I was more anxious about this appointment than I was willing to let on.
Since Jason was unable to take the day off from work my Daddy came with me to my appointment in Tampa. Dr. Huhta goes between All Children's Hospital in St. Petersburg and St. Joseph's Women's Hospital in Tampa. This day he was in Tampa so at 8:30 in the morning we started our 3 plus hour drive.
It was fun having Daddy drive me down. We talked and had biscuits from Hardees. Drank lots of water but didn't need to pee surprisingly enough. We made great time. So great in fact we had 2 hours to waste before the appointment. So we called Mom and she set us off on a mission. She needed Flutterbyes for my nieces for Christmas. We found a Toys R Us and even though they had them I knew most places had them cheaper. By almost 10 bucks! So we left there and found a BJs. They had them. We bought them. Mission accomplished! We wondered around for a little bit and then decided to get going.
We drove to the hospital and almost didn't make the appointment. We got lost and no one could tell us where we needed to go. It was frustrating. They couldn't even find Dr. Huhta in the directory. I was getting very annoyed. I didn't just drive all this way for nothing! Finally I called the St. Petersburg office and they told us where to go. As soon as we got back to where we started (the same place the first person told us we were in the wrong place) my dad went straight up to the girl and got on to her about wasting our time. She was apologetic and got us signed in immediately. It was then I realized just how nervous my dad was too. He is usually so easy going and level headed.
Lori the ultrasound tech came and got us and we got down to business. I'm a talker so I was making small talk and then the door opened. It was the infamous Dr. Huhta.
When we would go see Dr. Lacey the tech would perform the sonogram and when done would upload the pictures to Dr. Lacey where she sat in an office and reviewed them and made measurements and notes and then would come in and talk to us.
So, here's Dr. Huhta in the room with us looking over the shoulder of the tech asking questions, looking at the scan as it's happening and you can see his mind working. All the things Dr. Lacey does in her office with the help of pencils and paper and calculators Dr. Huhta is doing in his head. Then he asks "And the atrial septum?" So Lori scans over it again and, under her breath, says "looks OK to me". My dad and I both gasped! I begged my dad to just sit tight and we would talk about it when the sonogram was done. I just knew they were going to look at it from another angle and we would hear "Ahhh, now I see" or something to that affect. And just as soon as it started the sonogram was done. Dr. Huhta (who had introduced himself as soon as he walked in) told us he would meet us in the conference room as soon as I was cleaned up and ready.
The very short walk to the conference room, which was just simply around the corner from the sonogram room, seemed like the longest walk of my life. What was he going to tell me? We sat down at the round table and he began to talk. The room started to spin. I couldn't believe what I was hearing.
"No need for atrial intervention" (translation - he doesn't see a need for an atrial septostomy)
"Mild atrial restriction"
"I like to see a mild restriction in Hypoplastic Left Heart babies."
And the one that had me in tears.....
"3 out of 4 chance of seeing your son playing in Kindergarten!"
So because of one simple phone call my son's chances at life have gone from 10% (or worse) to 75%. I still can't believe what I heard.
Dr. Huhta explained our son has a mildly restrictive atrial septum. In his mind and experience it is not severally restrictive. He said he actually prefers a mild restriction because in an HLHS baby the atrial septum being completely open would allow blood to over flow the lungs once born and that is worse for our little guy. A mild restriction prevents a blood overflow into the lungs. Our baby was showing him all positive things. As positive as it can be for an HLHS baby.
He went on to explain they perform the Sano Modification to the Norwood procedure which gives babies a 15% mortality rate instead of 20% with the regular Norwood. Their mortality rates on the second and third procedures (the Biodirectional Glen and the Fontan) are in the single digits. More specifically 1-2%.
There were so many other things said in that meeting that I will have to have another post just to further explain everything. Bottom line was ~ Our baby has a chance! Prayers, fasting, Priesthood power! It all works. Miracles can happen! Our baby might just survive this.
Since Jason was unable to take the day off from work my Daddy came with me to my appointment in Tampa. Dr. Huhta goes between All Children's Hospital in St. Petersburg and St. Joseph's Women's Hospital in Tampa. This day he was in Tampa so at 8:30 in the morning we started our 3 plus hour drive.
It was fun having Daddy drive me down. We talked and had biscuits from Hardees. Drank lots of water but didn't need to pee surprisingly enough. We made great time. So great in fact we had 2 hours to waste before the appointment. So we called Mom and she set us off on a mission. She needed Flutterbyes for my nieces for Christmas. We found a Toys R Us and even though they had them I knew most places had them cheaper. By almost 10 bucks! So we left there and found a BJs. They had them. We bought them. Mission accomplished! We wondered around for a little bit and then decided to get going.
We drove to the hospital and almost didn't make the appointment. We got lost and no one could tell us where we needed to go. It was frustrating. They couldn't even find Dr. Huhta in the directory. I was getting very annoyed. I didn't just drive all this way for nothing! Finally I called the St. Petersburg office and they told us where to go. As soon as we got back to where we started (the same place the first person told us we were in the wrong place) my dad went straight up to the girl and got on to her about wasting our time. She was apologetic and got us signed in immediately. It was then I realized just how nervous my dad was too. He is usually so easy going and level headed.
Lori the ultrasound tech came and got us and we got down to business. I'm a talker so I was making small talk and then the door opened. It was the infamous Dr. Huhta.
When we would go see Dr. Lacey the tech would perform the sonogram and when done would upload the pictures to Dr. Lacey where she sat in an office and reviewed them and made measurements and notes and then would come in and talk to us.
So, here's Dr. Huhta in the room with us looking over the shoulder of the tech asking questions, looking at the scan as it's happening and you can see his mind working. All the things Dr. Lacey does in her office with the help of pencils and paper and calculators Dr. Huhta is doing in his head. Then he asks "And the atrial septum?" So Lori scans over it again and, under her breath, says "looks OK to me". My dad and I both gasped! I begged my dad to just sit tight and we would talk about it when the sonogram was done. I just knew they were going to look at it from another angle and we would hear "Ahhh, now I see" or something to that affect. And just as soon as it started the sonogram was done. Dr. Huhta (who had introduced himself as soon as he walked in) told us he would meet us in the conference room as soon as I was cleaned up and ready.
The very short walk to the conference room, which was just simply around the corner from the sonogram room, seemed like the longest walk of my life. What was he going to tell me? We sat down at the round table and he began to talk. The room started to spin. I couldn't believe what I was hearing.
"No need for atrial intervention" (translation - he doesn't see a need for an atrial septostomy)
"Mild atrial restriction"
"I like to see a mild restriction in Hypoplastic Left Heart babies."
And the one that had me in tears.....
"3 out of 4 chance of seeing your son playing in Kindergarten!"
So because of one simple phone call my son's chances at life have gone from 10% (or worse) to 75%. I still can't believe what I heard.
Dr. Huhta explained our son has a mildly restrictive atrial septum. In his mind and experience it is not severally restrictive. He said he actually prefers a mild restriction because in an HLHS baby the atrial septum being completely open would allow blood to over flow the lungs once born and that is worse for our little guy. A mild restriction prevents a blood overflow into the lungs. Our baby was showing him all positive things. As positive as it can be for an HLHS baby.
He went on to explain they perform the Sano Modification to the Norwood procedure which gives babies a 15% mortality rate instead of 20% with the regular Norwood. Their mortality rates on the second and third procedures (the Biodirectional Glen and the Fontan) are in the single digits. More specifically 1-2%.
There were so many other things said in that meeting that I will have to have another post just to further explain everything. Bottom line was ~ Our baby has a chance! Prayers, fasting, Priesthood power! It all works. Miracles can happen! Our baby might just survive this.
Labels:
Answers,
atrial septum,
Baby Brother,
Hope,
Huhta
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1 comments
Monday, December 9, 2013
Power of the Priesthood
The first Sunday of every month is Fast and Testimony meeting at our church. We fast for two meals and give the money we would have used for those meals to the welfare program at our church. And our church service is dedicated to those who want to bear testimony to the truthfulness of the Gospel. This particular Sunday, first Sunday in December, the congregation was asked to fast and pray for Baby Brother. For those willing and able, make Baby Brother the focus of your fast and your prayers. Then my sister posted on Facebook about the fast so we had people all over the country fasting and praying for Baby Brother.
{You can read more about our faith and beliefs here www.mormon.org }
Sunday afternoon my friend Pam, her husband Rick and her father Carl Luke came over to talk about the baby and to give the baby a priesthood blessing.
I guess I should stop here and tell you about a phone call with my cousin's wife I had on Tuesday after getting the phone call from Dr. Lacey. Jennifer, who also has a Hypoplastic Left Heart son, reminded me of the power of prayer and to prayer for angels to be in the delivery room. She said I have a brother, my baby brother who passed away at the age of 10 weeks from SIDS, on the other side who is waiting for me to summon him so he can serve me. She said he is just waiting to help and if I asked would guide his nephew's spirit from one world to this one. That he is just desperate for the opportunity to serve me.
OK, So Brother Luke and Rick gave me a blessing. In this blessing Bro. Luke said a lot of things but something I picked up on immediately was him summoning angels to the delivery room and the surgical room. He asked for those angels to guide the hands of the cardiologists so our son has the best chance. He never said my son would be healed but he did say that through our faith miracles could happen. It was powerful prayer and left me feeling positive in a way I hadn't allowed myself to feel in months.
After they left Jason and I talked about it and the thing Jason picked up on was also the asking of angels to attend to us, the baby and the surgeons. And I have faith that all the things he spoke of in this blessing could and would happen. I have faith to move mountains. Especially where my little man is concerned. But, and I know there shouldn't be a but, we have received such horrible news for so long my faith in good news was wavering. But I had to remain hopeful and faithful!
{You can read more about our faith and beliefs here www.mormon.org }
Sunday afternoon my friend Pam, her husband Rick and her father Carl Luke came over to talk about the baby and to give the baby a priesthood blessing.
I guess I should stop here and tell you about a phone call with my cousin's wife I had on Tuesday after getting the phone call from Dr. Lacey. Jennifer, who also has a Hypoplastic Left Heart son, reminded me of the power of prayer and to prayer for angels to be in the delivery room. She said I have a brother, my baby brother who passed away at the age of 10 weeks from SIDS, on the other side who is waiting for me to summon him so he can serve me. She said he is just waiting to help and if I asked would guide his nephew's spirit from one world to this one. That he is just desperate for the opportunity to serve me.
OK, So Brother Luke and Rick gave me a blessing. In this blessing Bro. Luke said a lot of things but something I picked up on immediately was him summoning angels to the delivery room and the surgical room. He asked for those angels to guide the hands of the cardiologists so our son has the best chance. He never said my son would be healed but he did say that through our faith miracles could happen. It was powerful prayer and left me feeling positive in a way I hadn't allowed myself to feel in months.
After they left Jason and I talked about it and the thing Jason picked up on was also the asking of angels to attend to us, the baby and the surgeons. And I have faith that all the things he spoke of in this blessing could and would happen. I have faith to move mountains. Especially where my little man is concerned. But, and I know there shouldn't be a but, we have received such horrible news for so long my faith in good news was wavering. But I had to remain hopeful and faithful!
Labels:
Baby Brother,
Cassie,
Hope,
Jason,
Priesthood
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I am a regular everyday wife to Jason and mom to Christian and Georgia on a roller coaster ride. We are overjoyed to be welcoming a 3rd baby into our life. We feel blessed to be given such a special spirit in this 3rd baby. This is our journey to mend our baby's broken heart.
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