Happy New Year!!!!

 

As 2013 approaches us rather quickly I might add, I would like to take a few moments to recap what has been going on and what to look forward to in the New Year!

 

 

It is hard to believe that this past year Tristan "graduated" from Pre-K, spent the summer at Splash Down Water Park being a fish and then started Kindergarten.  I can honestly say that when he was 4 days old and we were sitting in the consultation room at Children's talking with Dr. Cross, that I never thought we would get this far.  Low an behold Tristan had his own idea of what he was going to do and accomplish.  Now he is a very intelligent Kindergartner who is in the advanced Kindergarten class.  He is having a little trouble with his hands as I mentioned in the last post but we are working to get help with that.  Tristan had 5 cavities filled without Novocaine because he cannot currently have it because it lowers his already low heart rate.  Other than that he has had an amazing year making new friends at school and growing like a weed!

 

In 2013 we are anticipating a fantastic year for all of us.  Tristan will be starting hockey lessons next week.  I will be sure to let everyone know how that is going.  He was swimming over the winter but after going ice skating for the first time yesterday he has decided he is going to give hockey a try.  I think his cousin Ira has something to do with this but that is OK with me.  We are also waiting on the reports from his last holter monitor and blood work that was done at the last Cardiology visit.  Tristan seems to be holding fluid again but it isn't too bad.  Some of the kids with the Fontan tend to do that for a while but it is just taking Tristan a really long time to get used to.  OK so maybe almost 4.5 years but who is counting :)

 

In 2013 we will also being going on our First Family Cruise.  We are very much looking forward to this vacation.  We are going to celebrate the marriage of our very good friends Todd and Leslie.  I am very excited and nervous at the same time because there is so much I need to get ready to take with me for Tristan.  I need to make sure I have their birth certificates, Tristan's most recent EKG and last Cath pictures.  I also need to bring the finger pulse ox I just recently purchased.  I will also have a letter from his pediatrician and possibly his cardiologist for that 'just in case" envelope.  I need to call the cruise line and make sure they are able to accommodate a pediatric patient and if not then I will make sure we have what he may need, ie: blood pressure cuff, finger pulse ox lead, pediatric leads, and possible pediatric needle for ivs.  I was told that they will make sure they have those on board for him as long as I speak directly with someone in their health department.  All fun things I have to look forward too in the next month.  I wouldn't change one minute of it!!!

 

I really hope that everyone enjoys their New Year!  I will do my very best to update this with new and excited information as much as possible. 

 

Happy New Year!  May your New Year be filled with all the joys you could imagine!!!

 

 

'Tis the Season!

'Tis the Season for us to be thankful for what we have and to honor those lives lost.  I am very deeply saddened by the events that took place on Friday.  I wish for all those parents the strength to get through this very rough road ahead.  I wish for them to find strength in friends, family and even strangers who become new friends.  I do believe that we need to come together as parents and watch out for our children as well as other children and be aware of our surroundings and the situations we are faced with everyday.  Tristan has taught us to remember that life is precious and to not take things for granted. 

We have a meeting on Wednesday with the intervention team at Tristan's school to get him scheduled for another meeting for either 504 or an IEP.  Tristan has been apart of a study at Children's for The effects of lack of oxygen on brain development in single ventricle children.  Wow that is a mouth full.  So after a day long evaluation it has been determined that though Tristan is very advanced for his years he also has some other things he needs help with.  It has been determined that his fingers have caught up with him.  Those fingers that I love so much do not want to function the way they should.  After having three surgeries on them to finally separate them he has some dexterity issues that need help.  He has a little trouble with writing in the designated area, needs more help with gripping the pencil and a few other every day things.  Also he has difficulty with Functional Recall. An example is that if you show him pictures of something then want him to tell you what he saw after taking the pictures away he can not recall what he saw.  It is not that he isn't looking at them or didn't see them, he just can not recall them from his memory.   Another way that is shown is even in group discussion where he is talking about something and then just looks at you with a blank stare.  He has forgotten what he was talking about and needs help redirecting and remembering.  Is it ADD or ADHD you are probably thinking and the answer is no.  His brain did not have enough oxygen during development in utero as well as until he was 18 month old.   So basically he will need OT services for writing and extra time for tests and writing assignments.  I know what a lot of you are thinking, not Tristan.  He is very advanced but will also need help.  The hardest part about all this is the fact that he is advanced.  He is not cognitively at the kindergarten level.  He has been tested and is more cognitively a first grader and a second grader in some areas.  This poses a big problem because with the testing the county has to do, he will most likely pass with flying colors.  He may not be given an IEP until he starts to fail in the classroom which I think he totally wrong.  He should be tested at the level he is at.  The good thing is that we have his teacher on our side because she sees the struggle that he goes through now.  The Executive Recall also effects him when he is doing an assignment.  His teacher talked to me one day after school and she had originally thought that Tristan was just being very thorough with his work, but come to find out he gets part way through it and can not remember what he is suppose to be doing.  So we think that he will at least get the 504 with services for his hands and extra time with assignments and tests at school because of the lack of dexterity.  Our hope is that will also help him be able to recall the things he is suppose to for those same assignments. All this came about because I was noticing he was very frustrated when he would come home from school and we couldn't figure out what it was.  After seeing Dr. Sanz at Children's and getting the report back we are able to start the process to get him the help he is going to need.  We are also going to be doing some behavioral therapy soon and he will be going to play therapy.  The events of his short little life are affecting him in ways that no one ever thought.  I get so angery when I hear people saying that these kids won't remember any of this.  Tristan is remembering some thing that at first I thought were from seeing pictures or hearing us talk about them but then some of the things he says about the operating room are things that we have not seen or even been there for.  Our hope is that with all these services coming together we can help make school a lot more fun for him and help him better understand what is actually going on with him.  He gets so frustrated when doing things it just breaks my heart.  For all our Single Ventricle friends I don't mean to scare you but this is what we all have to look forward too.  From the medication causing cavities to needed services in school, there isn't anything we wouldn't do for the lives of our children!  I wouldn't trade it for the world.  I love both my boys so much and will go as far as I need to with the school system to get the proper help that Tristan needs and if Drayk does too when he gets there I will fight for him too.  Their lives are very precious to me and I wouldn't trade my life with them for the world. 

I hope everyone has a Merry Christmas and a Happy New Year.  I will be sure to update once we know exactly what is going on.

The Fontan

The Fontan!

I know it has been awhile since I have posted anything and our next major surgery was The Fontan.  I decided to add this one today because a very special friend is having his Fontan done today as I type.  I remember that day like it was yesterday but in fact we are almost exactly 4 years from that very day.  Tristan had his Fontan at 18 months old.  We found out during the summer before that he was going to have his Cath to place a stint into his Left Pulmonary Artery and to take a look at things for his last open heart surgery.  All went well with that.  We got the call saying his surgery would be Oct. 6, 2008.  I was scared and relieved all at the same time.  We knew it was time because he was doing so well and hitting all his mile stones.  We checked into the Corporate Apartment the day before surgery with my Mom in tow.  The night before his surgery was filled with restlessness and worry.  He had already had a hand surgery in between his last open heart surgery so he was OK with being at the hospital.  I was just not mentally prepared to see him with all the tubes and wires again.  We were the 2nd case or so we thought.  We get there about 10am.  All is well then we hear we have been pushed back because of an emergency...OK no problem.  So we waited and waited.  All the while trying to keep an 18 month old contained in the Pre-Op area with nothing to eat or drink since the night before.  They were kind enough to give him an ounce of apple juice to hold him over.  That only seems to make him worse.  Then finally around 1pm we got word that he would be going back within the hour.  In comes everyone for one last final check and to give him some fantastic medicine.  Versed is the best loopy medicine for Tristan.  He was trying to run around and continue to play with the trucks and read but he couldn't walk in a straight line.  No sobriety tests for him while driving his little tonka dump truck.  They finally came to get him and the emotions ran wild with me.  I had to hold back my tears because I wanted to be strong for him.  I still can see his face when he went into the operating room with a big cheesy smile and waving.   He let the Anesthesiologist carry him back there with no problem.  He waved and blew kisses and as she closed the door it was like the flood gate had been opened.  I pulled myself together fairly quickly because of the strength of my husband and our family that was there with us. 

After about 3 hours we got the call he was out of surgery so we all headed that way to go wait to talk to the Dr.  I remember Dr. Jonas coming in to the room without much emotion and my heart sank.  I had no idea what to expect but I wasn't expecting good news.  Then he said everything went beautifully and he was on his way upstairs.  More tears, but this time they were happy tears.  We found out that the placement of the Fontan was a little complicated as most because it goes through his heart to connect the Inferior Vena Cava to the Pulmonary Artery where he wanted it to be.  There wasn't really any more risk with doing it that way but the risk of infection rose just a little bit.  So we all waited about 45 minutes before we were able to file 2 by 2 into see him in the CICU.  He looked amazing when we first laid eyes on him.  He still had the breathing tube in but all was great.  Since Tristan's surgery was so much later in the day it was almost time for shift change by the time we took turns eating and visiting.  Scott and I decided we were also going to take shifts staying with Tristan.  So if I remember correctly I got the first night.  It was fairly quiet because they weren't really going to do much since he wasn't long out of surgery.  The following day however is when things started happening.  Tubes and lines were already starting to come out.  We were a little surprised because we were told that this surgery is usually 7 days in the CICU and about that many on the floor or more.  So on day one post-op when stuff started happening we were a little excited.  He was eating again on day two post op and I had to laugh when I walked into his room and he had a sausage in his hand because he was starving.  Once he started eating he didn't stop for what seemed like 2 whole days.  They decided to take his cath out on Saturday which was only the 2nd day after surgery, and this little guy knows what pain is.  He peed once and then wouldn't do it again because it hurt.  Poor little man was having trouble with his pressures and his oxygen saturation because he wouldn't pee because it hurt.  We finally got the doctor to give lasix to help him go but the nurse wanted to cath him again.  We tried to fight it as long as we could and then they wouldn't give him the lasix so they had to cath him.  Well that was not fun.  They basically did it then gave him the lasix....duh anyone would pee as soon as a diuretic was given.  So later that day they took it out again and this time I told them they were not putting it back in.  They did keep the lasix on board so we didn't have any trouble peeing after that.  Day 4 were were moved to floor because little hot shot was doing so well.  Tristan amazes me all the time, then and now.  We ended up in the hospital for a total of 9 days.  Tristan did so well they kicked us out early.  To our surprise he was ready to go home. 

The Fontan procedure is today the last staged operation for all children born with congenital heart disease who cannot be offered a 2-ventricle repair. Originally designed by Fontan for treatment of tricuspid atresia, the procedure has undergone 2 major successive technical modifications.^1–3 In its first version, the atriopulmonary connection (AP), the right atrial chamber was isolated by the closure of the atrial septal defect and the hypoplastic tricuspid valve. The right atrial appendage was then anastomosed to the right pulmonary artery.³ It was later understood that better streaming of the blood flow in the systemic venous pathway to the lungs improved the patients hemodynamics and might avoid complications related to progressive atrial dilatation. The operation was therefore modified to the lateral tunnel technique (LT), whereby the right atrium was baffled with an intraatrial patch and the superior vena cava was sutured directly to the right pulmonary artery.¹ Performing the anastomosis between the superior vena cava and the right pulmonary artery (bidirectional Glenn) at an earlier age as an intermediate step decreased total mortality and morbidity to achieve a final Fontan circulation.⁴ The most recent modification of the technique consisted in the replacement of the intra-atrial routing of the venous blood by the insertion of an extra-cardiac conduit (EC) between the inferior vena cava and the right pulmonary artery (Figure 1).²

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Figure 1. Fontan surgical techniques: Classical atriopulmonary connection (A), Lateral tunnel (B), and extracardiac conduit (C).

An increasing number of “Fontan patients” are now entering adulthood, and these patients are facing an uncertain future. It is clear from the 20 years follow-up of the operations performed in the initial era that this operation remains palliative. Patients are prone to developing arrhythmias, heart failure, and progressive rise of their pulmonary vascular resistances.^5–9 Conversion of the atriopulmonary connection or the lateral tunnel technique to the extracardiac technique has been successful in treating failing Fontan patients, but the indication of this new procedure are still under investigation.^10,11 Because it is still unclear whether the technical modifications brought to the initial Fontan operation translated into long-term clinical benefits, we decided to review our clinical experience with these three techniques.

Once we got home things were great for a whole day!  Then the following day I started weening him off his Tylenol and Motrin and things started going down hill really fast.  He was very lethargic and tired and started running a fever.  At first we were in the in the 99's, then slowly it crept up to finally topping out at 103.9.  We were already packed and I called the Cardiologist on call and by the time we got to the hospital the ER was waiting for us and we went back then up to a room.  We spent another week in this hospital.  I had never been so happy to finally hear that it was a UTI from being Cathed a second time.  While there we found out that Tristan's Spleen was in multiple pieces which is known as Polyspleenia.  So now he gets put on another medication that will follow him for quite some time...Amoxicillin everyday.  Hear we are almost 4 years later and still on Amoxicillin once a day.  Because of the Polyspleenia he is immune deficient.  Seriously at this point I was like whatever, keep throwing stuff at us, we can handle it, and handle it he has. 

Tristan is now in Kindergarten, has all 10 separated and almost fully functional fingers and is doing fantastic.  Last summer he has his Fenestration closed that was left open during the Fontan.  His oxygen saturation's are between 92-99.  He is about to go into the gifted program at his school and tested out of Kindergarten for reading and math.  I couldn't be more proud of all he has been through and all the obstacles he has over come.  He is one smart little boy with a heart of gold!  He truly touches the hearts of all he meets.  Do not get me wrong his is still a little boy who likes to torment his little brother who fights back pretty well. He played T-ball last spring, swam over the winter and we spent almost all summer at the water park.  I will try to update this about once a week now but no promises.  Drayk is in school twice a week so I should at least have one day a week to let all know what is going one. 


Please send lots of good thoughts and prayers to our heart buddy Caelen who is having his Fontan right now!!!  Good Luck Caelen...Katy and Martin we are thinging about you guys!

Oct 6, 2008

Sept16, 2012

Renn Faire with the whole family.  Tristan is 5 and a half now!

The Glenn

At a little over six months old Tristan was heading back to Children's for his Glenn.  We had been told to expect a visit lasting up to 2 weeks so I packed stuff for myself, Scott and Tristan.  We had all the goodies, toys, a mobile, an air matress and lots of books and things to keep Scott and I busy.  The day before his Glenn was a crazy day.  We had a pre-op appointment at 8am at Children's.  With the help of my Dad we were at the appointment and Tristan was very entertained.  The appointment itself was very quick.  We were able to get his blood work done, chest xray and urine test done fairly quickly.  Then it was back upstairs to see the CVS Nurse Practioner.  She did his exam and told us that we could go hang out in the cafateria or wonder the halls until it was time to visit with Dr. Jonas.  This is what makes the day long because you have to wait for him to come out of surgery or finish with his rounds.  Luckily for us we were able to see him about an hour after we were done with everything else.  The meeting with Dr. Jonas is always fun but a little scarey.  To be able to talk to him one on one and have him interact with your child is an amazing thing.  He talked about the surgery and the risks and even drew us a picture so we would know what they were doing to Tristan's heart this time around.  The would be taking down his Sano Shunt and connecting his Inferior Vena Cava to his Pumonary Artery.  Sounds pretty simple and out of the 3 surgeries it is suppose to be the easiest.  One of the only major side effects would be headaches.  The rate of mortality went down from the Norwood to only about 3%.  That was a releif.  So I signed the consent form and we were on our way.

With the help of my dad, Tristan and I checked into the Ronald McDonald house to relax before having to be at the hospital for 8am the next morning.  Scott met Tristan and I down there when he got off work since he would be off until Tristan was home I figured I could handle the appointment with my dad.  That night Tristan just played and had fun.  He went to bed as normal without a care in the world.  Scott and I on the other hand had a little bit of trouble sleeping.  We had had Tristan home with us for the last 5 months and handing him over for surgery was going to be very difficult.  I think we managed to fall asleep and get about 4 hours of sleep.  The adrenolen hit us as we enter the hospital in the morning.  We went back to the surgical waiting room to check in.  We signed paperwork again and waited to be called back.  Scott's parents, brother and sisiter in law and my Dad were all there with us.  My mom was in Florida because they had moved down there a month before hand.  We were called back and Tristan was his happy self the whole time.  Scott and I kissed him as he was carried back into the OR with the Anesthesiologist.  He looked back at us and smiled.  That was what I needed to see.  Scott and I stood there in each others arms for a few minutes before we made our way out to our family.  We were given a pager and told that we would be updated throughout the whole surgery but if there was anything we would need we could call the conseirege and she would get us any information.  What we were not prepared for was the time between him going back into surgery and the time they make the first incision.  It took almost 1.5 hours.  That was how long his 1st surgery took but Scott and I discussed it as we always did before we would get worried.  Tristan already had all his lines and IV's before his 1st surgery, they needed to do all that this time.  So we went outside because it was beautiful and we could all sit together without being stuck in the hospital the whole time.  After about 2hrs we were told the 1st incision had been made, then at 2.5 hours he was on bipass.  It wasn't long after that that we received another page that said he was off bypass and to meet Dr. Jonas back in the surgical waiting room for the update. 

It w about and hour after that page that we were waiting to hear and see Dr. Jonas.  Of course I started worrying that something had happened.  Dr. Jonas came in the room with a huge smile on his face and said everything went very well and we could see Tristan in about an hour once they got him in his bed and settled in the CICU.  So we waited some more.  A huge releif came over us when we saw him being wheeled past us on the bed and into the CICU.  He looked amazing and PINK.  Once we were able to go back and see him he was starting to wake up a bit.  He just looked at us almost as if asking what happened.  Scott leaned over the bed and told Tristan what happpened and where he was and he just closed his eyes to rest some more.  It's is amazing how much they understand even when you think they are too young.  We were not allowed to stay with him at night because they hadn't opened the New CICU yet so at about 8pm after shift change we left him to get some rest and we tried to get some rest but would be back in the morning for rounds. 

He had a fairly uneventful night and on Friday(the day after surgery) they started taking lines out.  Everything was happening so fast but Tristan was doing so well.  By Saturday we were upstairs in his room.  We had our own room so it made things a lot easier for sleeping and getting much needed healing rest for him.  The weekend was pretty smooth, he was up playing, eating and drinking almost like he was at home.  He was almost back to his normal self.  Come monday morning after rounds, chest tubes came out and pacer wires were to come out so we could go home on Tuesday.  Wait what happened to up to 2 weeks.  We were only there 5 days.  They tried to get his pacer wires out, one came out the other was stuck a little so they taped tension on it and we would have to be there until Wednesday morning.  Wednesday morning came everything was fine and we were out the door.  I couldn't believe it.  We were also told that after 3 months Tristan could have his hands fixed.  I had to slow down for a minute.  He was in the clear and stable now as far as his heart was concernd but we could schedule a consult with the hand specialist to have his fingers separated.  Wow things happened so fast.  We had his post-op appointment and all looked amazing and they were telling us how well he did and how fast he came through this last surgery.  The tagged him the poster child for HLHS. 

While we were in the hospital we met an amazing family that we are still great friends with today, 3 years later.  They were going through the 1st surgery with their daughter.  We stayed in touch, made visit until they finally got home.  The family support we have at CNMC is amazing.  We have met a lot of families and have kept in touch with most.  The next surgery would be between 18 months and 5 years old we were told.  So we had a year to go thorugh normal baby stuff.  Tristan would have his hands fix a week after his 1st birthday.  More to come about the time between The Glenn and The Fontan!

Our life between The Norwood and The Glenn!!!

Happy Valentine's Day!!!!

We were elated to be home from the hospital after 3 long weeks following Tristan's birth.  the scariest thing about being home was it was just us.  We knew Tristan was healthy and that he was stable to come home.  We bought an Angel Care monitor that would make noise if he stopped breathing.  That was enough comfort for us.  Other than Scott sleeping on the floor in his room the 1st few nights.  Tristan was on a very stricked feeding schedule.  He was to have 2.5 oz of fortified formula (an extra half of scoop per ounce) every 2.5 hours even at night.  This was so he wold continue to gain weight.  he left the hospital only about 3 ounces under birth weight which wasn't too bad.  Trying to get on a schedule where both Scott and I could get some sleep was a bit difficult.  We would alternate feds so we would at least get 5 hours of sleep.  Not that it really happened because for a while when it was time to get up we were both up checking to make sure he was in fact OK.  After a little while we got into a routine at night.  I was busy with follow up appointments and trying to find a pediatrician who knew what HLHS was.  After some help from our Cardiologist we found a wonderful one.  We saw her every week for awhile then went to every 2 weeks.  After about 3 weeks we noticed that Tristan wasn't acting right, he was screaming inconsolably.  I called my mom because Scott was at work.  I put him in the bath and notices he has what looked like a pimple but bigger that was ready to pop at the top of his incision that was completely healed.  We were 5 weeks out of surgery I mean i would have thought it would have shown up soon.  So I called Scott, who came home from work.  I was immediately on the phone with the NP of Cardiothoracic Surgery and she said bring him in there is a bed waiting for me.  It was Mother's Day weekend.  We arrived straight to the unit to find a Surgeon waiting for us.  He took one look at it and said, "its a staph infection he needs IV antibiotics for 3 days then he can go home on oral ones. 

So the Surgeon came and opened the spot and cleaned it out.  All of that was not much fun even morphine didn't help the pain Tristan went through.  So here we were only 3 weeks after leaving the hospital, back in for 4 days.  I thought we have got to have a plan if we are going to be in and out like this.  They told us we might but after how well he did after his 1st surgery i was in denial.  Tristan was release 2 days after Mother's Day on Daddy's birthday.  We were happy to arrive home to cake and balloons!!!  It was May 15!  We got back into our routine and all was well.  Tristan was getting ready to be at Mommy and Daddy's wedding as we were getting married on the 15th of June.  All was well for 2 months.  Tristan continued to can an ounce a day and started to act like a "normal" baby would.  I use "normal" very loosely as he is our norm.  Doctors visits every week, Cardiologist visits every few weeks was just part of our routine.  It was July and my parents were getting ready to move to Florida.  I had planned a surprise going/35th anniversary party on the 21st for them.  Old childhood friends and family were all coming.  

Tristan's 1st family outing was to Celebrate my cousin Kevin's High School Graduation.  He was passed around and played with.  He had a great time.  Everyone wanted to see him, hold him and hear his story again.  We left there exhausted but it was great to have Tristan out and not stuck at home.  We tried to get out to the mall and walk a few times a week.  I refused to be confined to my house because he was doing so well.  I was though very protective of people wanting to touch the "cute baby" but it was a lot fun.  We were woken one morning with terrible news.  My cousin who just graduated was killed by a drunk driver.  So we spent more time with the family.  We took Tristan with us to the viewing and the funeral as he was just as much a part of the family as everyone else.  The thing that got me through this terrible tragedy was that now Tristan had(has) his very own Guardian Angel!!!  I am sadden at the loss of my cousin and still think about him often but we are over joyed to share with Tristan all the fun things Kevin did.  Kevin truly has helped us get through this road with Tristan. 


On the July 20th Tristan had a different plan for us.  He was turning blue around the mouth.  We took him to the pediatrician who immediately sent us to CNMC because he was pulling and trying to catch his breathe. 
We were admitted for tacypnea(labored breathing).  It was suppose to be a short stay but it turned out to be a week long.  Scott stayed with Tristan on Saturday as I had over 50 people coming to my parents house for a party.  While Tristan was in the ER he was given a rectal temp...something I did twice a  day to keep an eye on his temp because if it got above 100.2 we were to call CNMC.  But something went wrong in the ER.  They did it and he about jumped off the exam table.  So we knew it was uncomfortable but didn't know it would eventually keep him in the hospital for 7 days.  After they got his breathing under control he started having blood in his stool.  Everyone was in to see us, from the Nutritionist to the GI docs all to tell me he had developed a milk allergy.  Um...I don't think so.  I fought it tooth and nail.  We didn't come into the hospital for a bloody stool it happened after he got here so lets see what the cause could have been.  I started writing things down that were different.  1st off he got poked in the butt, 2nd off he was on hospital fortified formula.  Other than that nothing was really all that different besides sleeping in a different bed, having the alarms hooked all...all things that wouldn't cause blood in his stool.  So i spoke with the nutritionist and she wanted  to change his formula.  I said no let me make his bottles and see what happens.  I finally got to talk to the GI Dr and being 4 months old and just developing a milk allergy doesn't usually happen.  I spoke with the Cardiologist and made it very clear that i wanted to file a complaint with someone about this and that i wasn't changing his formula until it was noted that me making it didn't help.   Well guess what?  I started making his formula and things started to get better.  He was having mucus with a little bit of blood which is what happens when there is trauma to that area.  The stools started firming up again and within 5 days there was no more blood.  Chalk one up for MOM!!!!  I was right.  No need to change his formula. 

Once we left the hospital our next visit would be an overnight for his Pre-Glenn Cardiac Cath.  That was in August.  So we were home for a month before we were back but it was a scheduled visit.  Tristan has his Cath and then 2 weeks later, exactly 6 month from his Norwood, he was admitted for his Glenn.  Tristan has his 2nd open heart at 6 months old. 

I will write more about that later this week as the boys and I will be traveling to Daytona Beach for the Daytona 500 and to visit my parents.

Happy Valentines day to all my HEART BABIES!!!!!

Our Story

In Honor of Congenital Heart Defect Awareness Week, which runs from February 7-14, I am going to share our story with you of how it was when we found out about Tristan. 

It was March 2007 and I was counting down the days until I would get that phone call from the OB surgical scheduler giving me a date that he would be born.  We had to do a schedule C section because his head was measuring huge and he wasn't dropping.  I got the call on March 27th had to go to the hospital for all the pre-op workup stuff.  We were totally excited that we finally had a date and that Tristan was going to have his 'own' birthday.  When you come from a family as large as mine it is almost impossible to have your own birthday but we had a choice between a few dates and snuck right in between two of my Aunts birthdays!  We got to the hospital around 1045am on  Thursday March 29th and made our way up to the L&D floor.  We got settled in and somehow my mom worked her way in to see us before the surgery.  She had connections because she worked there.  We went back into the OR at about 12:50pm and that's when all the fun started.  They got my epidural in and then in came Scott to be a part of the happiest day of our life.  Tristan came out at 1:19pm and was the most beautiful and perfect baby we had ever seen.  He wasn't crying very much so they immediately moved to the isolet and started clearing his airway and cleaning him up.  Is Apgar scores were 9 and 8.  Then about 5 minutes later went to 8 and 7 because they noticed his ring and middle fingers on both hands were stuck together.  We were told it was an easy fix and given a name of a few Doctors at Children's who could fix them.  I was very sick from the anesthesia so holding Tristan wasn't an option for me but Scott got to hold him and feed and take care of me.  He watch them bath him, check his color and temperature and do his little foot prints.  He was given back to us just in time for me to start throwing up.  We were kept in recovery for about 4 hours waiting for me to stop throwing up.  No one as allowed in to see me because I was so sick but all I wanted was water which they wouldn't give me.  Finally Scott went out to show the pictures of Tristan and came back with a bottle of water from my mom.  I drank some and was soon feeling better.  We were moved up to our room and Tristan fed again on a bottle.  I was still too nauseated to put him to the boob because if I looked down I got really dizzy.  We had a few visitors and at about 10 we tried to feed him again and he wouldn't wake up to do it.  We thought he was just acting like his father did when he was a baby and you had to strip him down and poke his heel in order for him to wake up.  Not so much for Tristan.  At about 11pm they came in to check on us and weigh Tristan and that woke him up.  We tried to feed him some more and he didn't want to have anything to do with it.  So about 2am a nurses aide came in to ask if he had eaten, how much and when.  We told her nothing since about 7pm and she said she was going to warm up the formula and if we didn't mind she would try to get him to eat.  Scott and I were completely OK with her helping if she had tricks we were all about them.  When took him from me and sat in the chair next to me and tried.  She got a very uneasy look on her face and asked very calmly if she could take him to the nursery to be looked at because he wasn't about to suck, swallow and breath at the same time. 

SO at 230am he was in the nursery with the charge nurse and we were resting a little thinking it was just a little fluid in his lungs because he was a C-section baby.  To our surprise at 5:45am on the 30th I get a phone call from the NICU Dr telling me that and I quote, " Your son was born with half a heart and has to go to Children's National Medical Center for open heart surgery or he is going to die."  WOW nice wake up call.  She then proceeded to tell me to have my nurse get me ready to come down and see him before he was transported.  I immediately told Scott what was going on and then called my mom.  My mom immediately called the Nun at the hospital so we could have Tristan baptised before he left.  I have never been so scared in my life.  My OB called and as soon as I said Hello, he says, "i thought you were going to give me a bigger baby than 7lbs 11oz!"  I immediately started crying and told him what was going on and he said everything would be fine he would figure out what was going on and call me back.  Finally at 8am I got my wheelchair so they could take me down to the NICU to see Tristan.  My parents were on their way as were Scott's parents, grandmother and my grandparents.  The NICU as a 2 person policy, well that went out the window.  We were taken into a very small room and shown a print out from google as to the the doctor was talking about.  Tristan had Hypoplastic Left Heart Syndrome which we were told was a very rare form of heart defect and it required immediate surgery but also had a very high mortality rate.  I really didn't care about what she had to say, all I wanted to do was see my baby boy.  When we were done she told us that he was being worked on and that they were trying to get a central line in from his belly button but kept going into his liver instead.  I just wanted to see him.  So she let us in.  It started out just Scott and I.  I was horrified when I was wheeled in and saw my son laying in the isolet with a tube in his mouth, an iv in his hand and foot and the nurse trying to get another line in his belly button.  He was ashen, not the pink little guy that left me a few hours ago.  What had happened was they put him under an oxygen hood and he started to crash.  Then in comes my parents. followed by the Nun and my grandparents.  Tristan was baptised with my parents as his Godparents and then not long after that the AMAZING transport team from Children's showed up.  We were told he would be taken to the Cardiac Intensive Care Unit where a team was waiting for him to admit him and assess his stability and we would talk to the surgeons very soon.  I sent Scott and told him do not leave his side once you get to the hospital.  I was told by the Transport Team that i would get a phone call in about 3 hours once they got him settled and stable.  I was given phone numbers and then the NICU staff took a picture of Tristan and off he went.  I went upstairs to my room and he left in his very 1st ambulance ride with Daddy not far behind. 

Three hours passed with visit from the family and phone calls.  My mom started a phone tree and my cousin Jessica stayed with me until I got news.  I know it was very hard for everyone to come visit me and not see Tristan but it really helped me a ton.  Three and a half hours passed an nothing so I decided to call the CICU and see what was going on.  I got a receptionist and asked to speak to baby boy daniels' nurse.  His nurse, Stefanie, picked up and I asked her how he was doing.  Her exactly words were he is going great, but let me let you talk to Dad.  Scott got on the phone and I could hear in his tone that things were a lot better.  They had him all hooked up to everything and he even got his color back.  Scott said he looks amazing and was opening his eyes and looking around.  Then he said, by the way he has blue eyes!  Scott stayed for a few more hours, got him tucked into bed and headed back to see me.  He walked him hold something swaddled in a blanket with a hat on its head...my heart stopped.  It was a teddy bear that he had gotten for me, well actually Tristan had gotten since it was in his isolet first.  Scott came back with about 50 pictures of all the different things they were doing and he said you can call them anytime and as often as you want but get some rest we meet with the surgeons on Sunday.  Friday nights sleep wasn't that fantastic lots of questions unanswered but a book from our Social Worker help explain things a lot better.  Saturday comes around and more visitors come in and i wanted to get out of the room for a bit so I got dressed, and Scott wheeled me outside.  It was a beautiful sunny day.  I called often to check on him and he was stable and strong.  He was the biggest newborn in the CICU.  My Dr came in and said i will sign your discharges papers so you can leave now if you want.  After some thought one more night before a long road would be much needed.  So she signed them so i could leave either Saturday or Sunday, whatever I decided.  Scott was back and forth between Silver Spring and DC on Saturday.  Sunday gets here and we are ready to leave at about 10:30am to go to CNMC to see my little man.  My mom meets us at Holy Cross to take all our stuff home and off Scott and I go. 

Upon arriving at CNMC we were met by a CICU nurse with a wheelchair to take me up to see Tristan.  We go up the elevators and turn a few corners and right in front of us was the CICU.  I started to tear up.  She waited outside for Scott to get there so we could go in together.  We went in and turned the corner and there was my precious little man.  He was beautiful and pink.  He looked amazing.  Not long after we got there it was time for out meetings with various people.  We were sitting with a Cardiologist in a very small consult room when we were explained what was wrong with Tristan's heart.  We were also given multiple options, fatality and recovery rates and quality of life information.  None of that was as important as saving my little boys life.  We opted for the 3 step surgeries.  The first step was The Norwood Procedure. 

Hypoplastic Left Heart Syndrome / Norwood Operation

 

Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. It is one of a group of cardiac anomalies that can be grouped together under the description "single ventricle" defects.

Example of a normal heart	Example of Hypoplastic Left Heart Syndrome
Hypoplastic ascending aorta and aortic arch.  Hypoplastic left ventricle. Large patent ductus arteriosus supplying the only source of blood flow to the body. Atrial septal defect allowing blood returning from lungs to reach the single ventricle.

In a child with Hypoplastic Left Heart Syndrome, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped.
The mitral and aortic valves are either completely "atretic" (closed), or they are very small. The left ventricle itself is tiny, and the first part of the aorta is very small, often only a few millimeters in diameter.
This results in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs, though the right side of the heart (the side that delivers blood to the lungs) is typically normally developed.
Blood returning from the lungs to the left atrium must pass through an atrial septal defect (ASD) to the right side of the heart.
The right ventricle must then do a "double duty" of pumping blood both to the lungs (via the pulmonary artery) and out to the body (via a patent ductus arteriosus (PDA)). The patent ductus arteriosus, a normal structure in the fetus, is often the only pathway through which blood can reach the body from the heart. When the ductus arteriosus begins to close, as it typically does in the first days of life, the blood flow to the body will severely diminish resulting in dangerously low blood flow to vital organs and leading to shock. Without treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within the first hours or days of life.
from:  http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/hlhs.htm

We were told that Tristan would most likely have surgery Monday afternoon or Tuesday morning but that we would know something on Monday when Dr. Richard Jonas came to look at him.  Dr. Jonas is the Cardiothoracic Surgeon that will perform all three surgeries.  So the waiting begins. Monday rolls around and no surgery, Tuesday rolls around, no surgery.  All the while we were told it will be tomorrow.  COme to find out Tristan was responding to the medicine that was keeping him alive and was very stable so they had to take the other sick Children first.  OK fine I get that, but come on we were very impatient but knew there was a reason for all this.  We got news on Wednesday that Tristan would go into surgery first case on Friday morning.  Good Friday none the less so we were OK. Surgery took about 2 hours then it was another 45 mins afterwards until we could see him.  We were told prior to surgery that his chest would be left open to allow the heart to swell because of the placement of the shunt.  We walk in to see him and there he is laying paralyzed(drug induced) but peaceful.  His chest was left open but he had a few more tubes and wires in him.  They moved his breathing tube from his mouth to his nose so he could suck on a paci.  We could actually see his heart beating...His ACTUAL heart it was by far the coolest thing I have ever seen.  He wold remain paralyzed for 2-3 days until they close his chest.  We signed consent forms on Saturday to have it closed when he was ready.  Easter Sunday rolls around and he is still doing well but out of the 24 hours anything can happen period.  Unfortunately Scott had to go back to work on Monday and thankfully I was staying at the Ronald McDonald House not far from the hospital.  I would shuttle in and whoever was there visiting in the evening would bring me back.  They closed Tristan's chest on Monday and lots of things started changing.  His chest tubes were pulled, some lines were removed and then my favorite day of all time Friday April 13th I walk in to the CICU to see my beautiful boy smiling at me from behind his paci with only oxygen in his nose.  He was breathing on his own.  ON Saturday April 14th I got to hold him 2 weeks and 2 days after he left my arms for this journey.  That evening we were sent to the PICU which was step down care before he was admitted to the floor.  We were in the PICU for 3 days then one to the floor we went and what a shock.  There isn't a nurse at the bedside at all times.  Tristan was doing amazing.  He was drinking 2.5oz of breast milk every 2.5 hours and was looking around.  Once we were on the floor things moved even faster.  We were only on the floor for 4 days and we were sent home.  Tristan had his pacer wires taken out and his stitches removed on Friday the 20th and we were out the doors on our way on Saturday the 21st.  It was one hell of a journey and all the way through we had support from our friends and family near and far.  We never lost hope or gave up.  Tristan is a very powerful little boy too.  During all this Scott and I never once questioned why us.  We never once lost hope or felt lost.  We had each other to lean on and our family and friends as well.  I will post later how things were once we got home and before surgery number 2.
 

Welcome

Hello,
I am a mother of an almost four year old with Hypoplastic Left Heart Syndrome.  I decided after reading a few post on other sites about the struggles parents with HLHS children are having, to post ideas, thoughts and experiences for all to see.  I have heard horror stories and read articles that give miss information about what these children will be able to do when they grow up.  I am going to try and bridge that gap for some.  I will also be posting help ideas on how to deal with certain situations as I know that all cases are unique but maybe a little advise from someone who has been through this will help another family deal with thier situation.  We had such an amazing yet frightening journey and I will share our story with you and how we dealt with it at the time and how things are now.  I hope to have lots of followers but if only a few that is ok too.  I will be enlisting help from close friends with children with HLHS and also other Congenital Heart Defects.  I chose to start this now in honor of National Heart Month!  I hope you find this helpful or just a fun and informative read!