I wear red for Logan.

The Month of February is Congenital Heart Disease Awareness Month. Today had me thinking about the last 3 years and everything we have been thru. Honestly, I don’t know how I got thru it. From getting the devastating diagnosis that kept getting worse every single time we saw a new doctor, to having to rock him in my arms for 8-10 hours a day just to keep him calm while he was in severe congestive heart failure, to his first surgery in which we spent 6 weeks in an intensive care unit wondering if he would ever come home. During his second surgery (his ‘sutureless’) which was a complete shock in and of itself, we thought we were having a cath, but 4 days later we were having his 2nd open heart surgery. The most traumatic moment was when we came the closest to losing him. I remember his heart rate was getting up to 285 and his BP was dropping to almost 30….
His surgeon, looking very concerned said (which is forever ingrained in my mind) “I have to get in there right now, there is no time for anesthesia to come, I need to operate now.” We left the room shaking….I asked the nurse, “no anesthesia?” I was told, “well he has morphine in his system.”
These moments are the nightmares I live with every day. I know that I will never be the same.

I wear red for Logan.

Today had me thinking about all the children and their parents that I have gotten to know. The children that have passed on from this life are the ones that leave me with a burning desire to advocate and improve the outcomes for our kids.

I wear red for William.

I wear red for Noah.

I wear red for Elise.

I wear red for Pierce.

I wear red Ava.

I wear red for Rita.

I wear red for Jayson.

I wear red for EJ.

I wear red for Brookyn.

I wear red for Savannah.

I wear red for the countless heterotaxy children that I never met but whom I will forever be connected to by heart.

I don’t think its possible to describe the life we lead as parents to these children. The ups then downs, the unknowns, the waiting, the questions that can’t even be answered.
“there just aren’t enough kids alive, with what Logan has to have any real answers.” I have been told that one countless times.
If you just look at Logan’s first year of life, you will get a glimpse, of what our life has been like.

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As far from any dream about ‘ideal birth plans’ as one could get

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He was taken from me immediately, and I was not able to see him till the next day.  Excruciating is an understatement.

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Staring at my boys the last night before Logan’s first and most risky surgery, wondering if this was the last time Ethan would see his brother. At this point even though Logan looks like a normal baby….he really only had weeks to live.

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His bidirectional Glenn, AV valve repair, TAPVR repair, and SVC ligation.

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Yes, this was Logan’s post-Glenn oxygen sats.

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See how very blue he was in this picture?  It looks like he is holding his breath or something but in fact the path that blood goes after getting oxygenated in the lungs was blocked and he had close to only have of the oxygen in his blood that a healthy child should have.

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At this appointment I was told that Logan’s only chance of survival was a bilateral lung and heart transplant, because that blockage was not ‘fixable.’  This was the point that I decided that the only team I was going to listen to was Boston Children’s Hospital.  They disagreed, and this is when he had his ‘sutureless’ repair.

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Despite Dr. Jim Lock doing an amazing cardiac cath and bringing Logan’s sats up 20 points, it was decided that he needed to have the obstruction surgically removed.

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Despite the surgery opening up the pulmonary veins he still settled out in the low to mid 70’s post Glenn.  His heart however, was not having to work as hard, and for the first time, he didn’t become drenched in sweat while eating or crying.

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Logan on his first birthday.  At 12 months old, Logan could not sit, crawl, or roll, Logan wasn’t even strong enough to hold his head up yet.  He was medically anorexic and wearing 3-6 month clothing.

This was just Logan’s first 12 months of life. 

That is why,

I wear red for Logan.



Last Night

This is it, the last night before Logan is born.  I am sooo not ready but surprisingly numb.  I had a few little breakdowns thru the day but otherwise just been busy getting ready. 

Another sad thing that is going on is that while I am in the hospital someone is coming to take two of our chihuahua’s away.  Jake and Amy.  Jake is paralyzed and has no control of his bladder and bowels.  He requires a lot of maintenance.  He has to have is bladder expressed for urine 4-5 times a day, he stays locked up a lot of the day because he cannot control his bowels and with babies and toddlers around we cannot be cleaning up after him.  Ethan has already gotten to Jake’s accidents before I could twice.  With a baby that has no way to fight out infections on his own we have just decided that it would be in the best interest of our family to find him a better home.  Luckily, because he is soooo cute and loveable we actually had offers right away.  The nurses at our Veterinary hospital all have fallen in love with him and there is a women there who is thrilled to take him.  She is a vet nurse so she is very capable of taking care of Jake and will have access to great medical care.  Jake has also been with Amy from birth and just cannot see splitting them up.  They snuggle all day and all night and it just wouldn’t be right for him to be without her. So we are also going thru the loose of two of our pets right now, which is not easy (especially for a hormonal pregnant women) but we know it’s the right thing to do.  Because I cannot emotionally handle saying goodbye to Jake and Amy (mainly Jake) they are going to go while I am in the hospital.   So this is also my last night with Jake and Amy. 

I think I will be needing a glass of wine tonight to go to sleep.

Last OB Appointment.

We had our last OB appt. today.  We had our last ultrasound and our last NST.  Everything looked good on the Ultrasound.  Logan measured 6 lbs. 6 oz. (+/-  1 pound) puts him at 35% for weight.  Umbilical cord pressures were fine and our NST was perfect.  I met Dr. Lanvin for the first time he is actually the Dr. scheduled to do my c-section.  They work as a group and I had met everyone except for him.  We went over the logistics of surgery when to check in ect… and then we were sent on our way.  It is very weird to go to Children’s Hospital and not have an appt. at the Heart Center but they can’t good pictures now of his heart because of how calcified his bones are now.   So my next post may be when Logan arrives.

Count Down to Baby.

It is one week from today that I will be delivering Logan via C-section (unless I go into labor before then, obviously).  I am getting pretty nervous.  It hit me last night that on top of everything else, I am going to have to have major surgery, which I am not looking forward too.  The recovery time is sooo long. 

We have one more OB appt. tommorrow afternoon, our last ultrasound, and our last NST (non-stress test).  

We have everything ready to go.  Bags are packed. Nursery is ready.  Now if only I could be mentally ready.

Where we are now.

This was the email update I sent out to friends and family on Wed. the 19th. 
We had another super long day at the children’s Hosp. yesterday.  9AM-3PM with no breaks.  I was starving.  We had our last Fetal Echo which took a long time because babies’ bones are calcified now and all the pictures are very fuzzy.  That took 2 hours.  The good news is that there is still no deterioration in his condition everything was growing proportionately and Dr. Patel is still very optimistic that Logan will not need surgery in the first month of life.  We are still hoping that we can wait 2-4 months.  Dr. Patel always said (in terms of his life expectancy) that we know he won’t live to be 80 but there are no statistics on life expectancy because up until 10 years ago no one lived pasted 6 months.  Yesterday I asked him if he thought Logan would live to be 30 and he said he didn’t know.  That was really hard to hear.  He said the oldest kids with a single ventricle are in there early 20s and some are doing better than others.  The main complaint being tired and getting worn out easily.  I am just really hoping they make some advances in all this in the next 10-20 years. 
The other thing Dr. Patel said that I didn’t really like was that he doesn’t think Logan has a ductus.  All babies (well most) have a ductus on the heart that allows oxygen to travel from the placenta to the baby in utero.  After birth  the ductus closes because baby doesn’t need that opening any more. Most babies with CHD are put on medications that keep the ductus open just to allow extra oxygen into the heart.  I asked him if this was a problem or a concern and he said no and acted like it was no big deal, but I am just not so sure. 
I will be full term Mon. so we won’t be seeing Dr. Patel until after the baby is born.  And then Dr. Patel will be Logan’s cardiologist and will see him every week or two.  I also asked him what the first surgery would be and he said they would try to reroute some deoxygenated blood or something, I was pretty confused about what he was explaining. 
Then in the lobby we were met by the Palliative group (three ladies).  They were a total downer.  They wanted to talk about end of life plans.  What we wanted if things didn’t go as we are expecting.  Do we want a priest or baptism ect… How much medical intervention we want.  Scott was really annoyed by them. 
Then I saw an allergist due to an allergic reaction I had during my last C-section.  They are going to put me on steroids before and after my surgery to help fight off any allergic reaction that might happen.  (They have no idea what I was allergic to and think it might be a combination of things).  He  put a list of things that they are supposed to avoid next time around Latex, glue, tape, certain drugs, certain sutures, ect… in hopes that some of those things were the culprit.  At this point I think maybe I just had a systemic reaction to a variety of foreign things throw at me all at once.  But on the other had I have had two other major surgeries (knees) and didn’t have this reaction but it was 10 years ago too. 
Then we had an OB appointment.  I have started to efface but not dilate.  They want to do weekly non-stress tests and ultrasounds now.  During the ultrasound the Dr. said the umbilical cord pressure was in the 91th percentile (which is high)  she said she doesn’t normally worry unless it is 95th % or higher but with everything else going on she wants to recheck the pressures Fri.  So we have to go back and have another ultrasound tomorrow.  Ugh….especially since we have to be there next Wed. for one.  Hopefully they won’t find any more problems.  The good news is even if there is an umbilical cord  problem baby is big enough now to be delivered.  He measured 6 pounds 2 oz.  but then she said +/- 1 pound.  So they have no idea, really.
Thats it.  We are getting very close now (at the most being 3 weeks) if I don’t go into labor before they have scheduled a C-Section for June 8th at 12pm. 
Ultrasound room at Maternal Fetal Medicine (High Risk OB)
The Ultrasound screen we get to watch
This is the poster that I am always staring at while they do the ultrasounds .

Here is the follow-up email I sent out on Fri. the 21st.
We went back to the hospital to get another umbilical cord pressure reading yesterday and everything was fine.  They said it was just a fluke reading before.  The also did another non-stress test and they said that looked great.  So we were actually in and out of the hospital in about an 1.5 hours which is amazing for us. 
We also met with Logan’s (soon-to-be) pediatrician.  They are Akron Children’s Hospital pediatrics’ so they share the same computer system with the hospital so all Logan’s info will be there.  They have a location just a few minutes from our house so it is very convenient.  We talked a lot about home care when Logan gets home.  I have some bad news for everyone, she said it is really important to not let many people around him for at least the first few months (and then I am assuming after surgeries as well).  And she said no kids especially.  Other than siblings.  The other thing she said is that people shouldn’t come visit him in the NICU either.  Other than immediate family and Grandparents.  I figured with the scrubbing in and masks and everything it would be OK but she said no.  I know a lot people wanted to come and meet Logan but I guess that won’t be possible until he is a little bigger and stronger.  She said his lungs are going to be very fragile and he is going to have a poor immune system.  She also said she wouldn’t take him anywhere the first few months either, so I guess I will be a shut-in this summer.  Thank goodness Scott bought me a super comfortable new outdoor couch and patio set. 
Also, she said even family and Grandparents should avoid contact if there is any signs of sickness.  I am just hoping I don’t sick then I don’t what we would do. 
We will also have to limit Ethan’s exposure to different people and places the first few months to make sure that he doesn’t bring germs in as well, so we will have a pretty quiet summer I guess. 
She said that while we are in the hospital someone from Infectious Diseases will go over everything with us to make sure we have a safe environment for him.  She also said there are programs to help us get home nursing care if we need that as well, so that was reassuring.  I am going to be so scared to take this little fragile boy home. 

The begining.

My pregnancy has been really hard from day.  I suffered from Hyperemesis (really bad morning sickness) for 6 months.  Hyperemesis is where you literally can not keep any food and very few liquids down.  I would throw up 15 times a day.  I was like having a really bad stomach flu for 6 months.  It really sucked.  I lost weight,  had to go to the hospital for IV fluids, pretty much had to lay around the whole time because any movement I made would make me throw up.  I was so terrified that I was hurting the baby by not giving him the nutrition that he needed.  I kept telling my OB that he can’t be healthy when I feel this horrible.  However, it turns out that Hyperemesis doesn’t affect the baby the baby takes whatever it needs from me even at my expense and there is some research that shows that babies are healthier and less likely to miscarry when Mother has bad morning sickness.  But  because I was so concerned my OB sent me to see a high risk specialist to do a level ll ultrasound (a detailed look at all baby parts) to reassure me that everything was fine. 
So at 18 weeks at this ultrasound was when we got our first suspicion that something wasn’t right.  The ultrasound tech had the Dr. come in and he stared at the heart for a long time and then finally said he could not get a 4 chamber view of the heart.  He said it could be because the baby was only 18 weeks or because he was in a bad position.  He said to come back in a couple of weeks when the baby was a little bigger to know for sure what was going on.  I knew something was really wrong.  I knew that it wasn’t positional my gut told me something was really wrong.  The next day I called my OB and said I wanted him to do an ultrasound and take a look.  He and an ultrasound tech also couldn’t find a four chamber view and we were told that he was in a perfect position to get it if they were going to get it.  They thought it looked like for some reason that the right side of the heart looked extremely underdeveloped but they weren’t sure so that is when we were referred to Dr. Patel at Akron Children’s Hospital.  Dr. Patel is a fetal cardiologist and has a special machine that is set up to look at the heart very closely.  We had to wait two weeks to get in with him which was the longest two weeks of my life. 
This is how Logan's diagnosis was made.
This is the screen we can watch while the tests are done.
We were warned by several people that Dr. Patel would not talk during the echocardiogram because he was concentrating very hard and not to be concerned by how quiet he would be.  Boy they were right.  It was deathly silent in there and the room was dark and I was told to try not to move and it seemed to take forever.  We were told that this test could take anywhere  from 20 min. to 1 hour.  So we were watching the clock like crazy.  When the appt. was going on for over 1.5 hours we knew it was bad.  The whole test took 2 hours and then him and another cardiologist took us into a conference room to give us the diagnosis.  I was worse than we ever could have imagined.  Actually, in Dr. Patel’s own words our baby has the most severe and complex heart condition you can have and it is called Heterotaxy with Right Isomerism.    Here is the email I sent out the next day to my friends and family to explain.  I only wanted to tell this story once. 
Well, I had a follow-up appointment with a fetal cardiologist at Akron General today and the final diagnosis is worse than they even suspected.  It is not even a hypoplastic heart.  It is worse.  The name is called Heterotaxy syndrome with Right Isomerism.  With Hypoplastic left/right heart one of the bottom ventricles is either too small or not there.  With heterotaxy there is only one ventricle and one upper chamber.  The reason you need two chambers  and ventricles is so that one is oxygenated and one isn’t. well, Logan’s heart (yes, we named him) the oxygenated and deoxygenated blood is all mixed together.  Also,  he has a no spleen, an enlarged liver in the wrong spot, and a stomach in the wrong spot.  The doctor said that this was the rarest heart defect you can have and also the worse.  Apparently at 5-6 weeks when everything begins to split into the ‘two halves of our body’ Logan’s body didn’t do that.  The left part of his heart never developed and the spleen is associated with the left half of the body so that’s why that is missing.  That is also why his stomach and liver aren’t in the right places because there are no right and left sides to his body cavity.  
The prognosis is not good.  5-10% of these babies die in utero.  Then another 25% – 50% of these babies’ pulmonary artery closes off in utero and then when they are delivered the mortality rate is 85-95%.  If the pulmonary artery does not close off and the baby does not die in utero the baby will have a 50% of living.  The worst part of this whole situation is that for this disease  they don’t do the surgery for 1-3 months after delivery.  So I will have gotten very attached to Logan before he has to have the surgery where there is only a 50-50 chance he will survive.  The doctor said he thinks the pulmonary artery looks really good and he is ‘very optimistic’ that is won’t close off in utero.  They are going to be watching the pulmonary artery very closely (practically every other week) to see if it is shrinking or not.  If it doesn’t close off I will deliver in the area and then go out-of-state for the open heart surgeries.  As of right now we are not talking about termination.  At this point I would have to deliver the baby anyway so why wouldn’t I give Logan a chance.  They did say though,  that if they did not think that they could fix the baby after delivery that they would discuss with us not doing anything and letting nature take its course. 
I am incredibly sad, incredibly angry, and totally overwhelmed by all of this. 
The following weeks and months I was beyond devastated and depressed.  You never think something like this would happen to you and it is an overwhelming amount of emotions to deal with.  I tried to keep busy I compulsively baked (brownies, muffins, cakes, pies) for weeks.  I just wanted everything to go away.  Then I started to scrapbook.  I started a daily scrapbook/journal about our life and this journey and that turned out to be a life saver for me.  I began to take daily pictures of our life and journaling about everything.  It has been very time consuming and a great outlet for me.  Scott and I also decided to take a vacation to get a way for a while which also helped me relax.