Back to Normal Life

After our conversation with Dr. Golander, yesterday, we left the hospital. 

I can't even begin to explain how amazed we are with the outcome of the catheter. We were convinced that Tehilla was going to need an additional surgery and had already began getting organized for that.

הודו לה' כי טוב, כי לעולם חסדו

Give thanks to G-d for He is good,
For His mercy endures forever.

Dr. Golander said that Tehilla should return to school today, as long as she promises not to bungee jump or parasail.

So, Tehilla went back to school and received some very big tearful hugs from her teachers.

And now, back to normal life. Thank G-d.

The Best Possible Outcome

If you're a fan of miracles, then apparently, we have no shortage of them.

We just spoke with Dr. Golander and were given the best possible news for this catheter.

Success #1: Her blood pressure is amazing for her.  It's in the high range of normal.  Compared to where it was- this is a huge difference.  We can now say without a shadow of a doubt that she does not suffer from out of control hypertension.

Success #2: She does not have any significant narrowing in her aortas.

Success #3: She has MILDLY reduced heart function which is common for HLHS patients. 

Success #4: SHE IS A CANDIDATE FOR THE FONTAN SURGERY!!!!!!!!!

They will discuss if it should be this spring or next spring. They will call us I'd they decide to do it this spring. 

But regardless, they will see us in 6 MONTHS!

Tehilla is fine, stable and doing very well. This was a very important catheter as it answered our questions all for the best.

Thank you, G-d. Thank you. Thank you. Thank you.

Morning Wake Up

Tehilla has more than made up for a day of fasting. She has eaten everything in her site and then some. She drank a ton and all of her vitals have been great.

Her face swelled a bit last night, but that's what usually happens to her after a catheter. She is completely back to normal now.

She woke up this morning at 6:00 am and said, "Mama! Up! It's 6:48!" I'm pretty sure she got that from us prodding Mechal to catch her school bus.

She just had an echo to make sure that everything is okay, especially after the balloon dilation. Everything looks good and normal. 

We are now waiting for our cardiologist to come talk to us.

Taking a Moment

Today, the catheter left us with a lot of question marks. Tomorrow, our cardiologist, Dr. Golander will come talk to us and I'm sure come up with some plans.

One of my heart friends used a phrase during his son's heart surgery recovery. He asked that G-d send him his manna for the day. This struck a very special chord with me and has stuck with me. Manna is the "bread" that G-d gave the Israelites as they walked through the desert. It was the perfect food with the exact nutritional needs for that person. It was exactly what they needed and nothing more or less.

I want to take a moment and really take in everything. Today, Tehilla overcame her 4th heart catheter. The catheter went smoothly and without complication. During Tehilla's 2nd heart catheter, she went into cardiac arrest. These catheters come with risk and a lot of concerns. Thank You, G-d, for allowing Tehilla to coast through, yet another procedure. 

We have received some insufficient information, but it put us in a better place and has given us a lot more hope than we have had in awhile.

We have once again felt the most beautiful love from our blog family. We felt all of your warm embraces and real care and concern. Your love for Tehilla and our family lifts us up and supports us through these difficult times. Your prayers strengthen us and I truly believe pounds on G-d's gates and demands positive results. Tehilla is just a little girl that surfs on miracle after miracle. Her medical story is one of unicorns and rainbows because it's magical and impossible and completely G-dly. And you contribute to these miracles.

So tonight, I'm going to bed with my heart full and my lips singing praise for G-d.

Yes, we definitely received our manna for the day.

Awake

She just sat up and the first thing she said was, "I want a beureka."

Good Update

They finished! It went very well and without any complication. Thank G-d.

Her blood pressure seems to be very good!!! We will not have any final results until they analyze the data. But it seems that way.

There was very very little narrowing of her aorta. They did a low pressure balloon dilation and it immediately failed. They are not concerned about it and do not feel it is the cause of her high blood pressure until now.

She does have reduced heart function and they need to understand why that is.

This is all we know right now. There is a lot of data for them to sift through and for our cardiologist to analyze. Right now, the recommendation is to go off of two of her blood pressure medications. We do not yet know if she is a candidate for the Fontan.

They are waking her up now. She is stable and doing great.

Thank G-d.

Just Started

Our cardiologist unfortunately is not doing her catheter. He had a personal emergency.  The cardiologist from yesterday, who is known as being one of the best at catheterization, is going in. His name is Dr. Sagi Gavri. Our cardiologist,  Dr. Golander will be back later to analyze the data with the cardiac team.

I just brought her into the catheter lab. Our favorite anesthesiologist is in there. She has been put under and they will begin shortly.

Please pray and say Psalms 57, 58, 75. We are praying for the best possible outcome and a healthy, complication-free catheter.

Tehilla bat Shoshana

Going Now

We are being taken now for the catheter. My next update will be when they start.

Still Waiting

The fluids are working and she is in a bit better spirits.

Here she is screaming:

"I WANT FOOD"

"LEAVE ME ALONE"

"I WANT CHICKEN SOUP"

"I WANT STINKY HEAD SOUP"

Delayed and Dehydrated

Tehilla's catheter is delayed. We are still waiting and have not even been brought to the catheter lab. Meanwhile,  Tehilla started dehydrating. She has now been hooked up to IV fluids. Her IV had moved and she had to get a new IV put in. It's been a hard morning for Tehilla.

We hope we will be sent for her catheter soon.

Here and Hungry

We are at the hospital and waiting for a bed. Tehilla is cranky and hungry. She tried grabbing food several times at home. We are keeping her distracted for now, but she is hungry, thirsty, and miserable. 

I will update when we are taken to the heart catheter lab.

A Little Non-Clarification

I will try to clarify everything that is unclear as of now...

So, today was a very busy day, where we got sent from one place to another, to take care of all the tests necessary before a heart catheter. We started the day with an echo.

We were seen not by our cardiologist, but by another (equally good) cardiologist. Tehilla freaked out the moment we put her on the bed to lay down and we took her shirt off. A little Peppa Pig on Youtube calmed her down and we were able to start the echo.

I won't pretend that I can read an echo or understand everything that is happening, but by now, I know what I am used to seeing and when something appears different. It was clear that the measurements being taken were not the same that we were used to. When the cardiologist started making "huh, hmmm, ok..." comments and his medical student gave him knowing looks, that it wasn't my imagination. Something was different.

The cardiologist explained that from the measurements taken her blood pressures appeared to be in the high range of normal for a child. Until now her blood pressure was in the high range of very high for a child. He then explained a lot of technical terms to back up his findings. There clearly was an improvement in her blood pressure. He called in the bat-sheirut (national service attendant) and asked her to take Tehilla's blood pressure in her left leg and right arm. Tehilla remained calm while watching Peppa Pig. Her blood pressure was a consistent 110/60 in both locations. A very good measurement for Tehilla.

He explained that she clearly still had reduced heart function and there was some little areas of narrowing that he could see on the echo. An echo gives a vague idea of what is going on, but by no means is a clear picture.

What it means?  So many possibilities.

But one of those possibilities is that her blood pressure is stable. And in that case, she is a possible candidate for the Fontan.

People don't understand why we are "excited" or pushing for Tehilla to have her Fontan surgery. For a regular person, surgery is scary and comes packed with risks. For a child like Tehilla- moving forward is the only way we want to go. She can not move forward without this surgery. Think of it as a milestone in a baby's life. You so badly want your child to learn to talk, to learn to walk. This is a huge milestone in Tehilla's life. She so badly needs the Fontan surgery.

So, before, we were told that she was not a candidate for the Fontan until her blood pressure was under control. That's gut-wrenching for us. It means not reaching a milestone.

And now!!! Out of nowhere, they believe that she could be a candidate. And more than that- in a few months time!

Now- I should prepare you that we may all get disappointed tomorrow. She may have her catheter and find out that her blood pressure is still very bad and that she is still not a candidate. So, back to what it all means...

They believe that there is some narrowing. How much remains to be seen in the catheter. Based on that, they will decide what kind of intervention needs to be done- whether it can be done during the catheter or requires a surgery. If it requires a surgery, whether is has to be it's own surgery or can be tagged onto the Fontan surgery.  There are a huge variety of possibilities of what they will find and because of that, we signed consent forms for 4 different procedures tomorrow- just to cover all options.

We are going into tomorrow with more hope in our hearts, with a greater chance of disappointment, but with many more options and possibilities. We are beyond astounded by today's echo. Even if we are disappointed tomorrow, today gave us a big reminder to believe in miracles and believe in the impossible. And most importantly to believe in the power of prayer.

Tehilla's catheter is scheduled for 1:00pm tomorrow. I will post a blog update when she is taken in. During that time, I would like to ask people to say Psalms 57, 58 and 75. Please pass her name around and ask that they do the same.

Tehilla bat Shoshana

All Done for Today

Tehilla had an echo, x-ray, EKG, blood tests, and was checked by the doctor. She hated all of it and screamed bloody murder for all of it.

In the end, she made her demands clear and we gave in. She got pasta that she didn't eat, my salad which she hadn't wanted, Ron's drink and a new doll stroller. She NEEDED it.

We are on our way home for the night. Tehilla is having her heart catheter tomorrow. We are 3rd in line and are scheduled for 1:00pm. We must be back at the hospital for 11:00am and she will be fasting from 7:00am.

I will try to post again tonight to explain further how much is up in the air after today's echo.

Good Unknowns

I don't know how you all do it- but your prayers work crazy miracles.  Crazy mind blowing miracles. 

Tehilla just had an echo which gave us a lot of unknowns. Tons of them- but really good unknowns.

Her blood pressure was great in her echo just now. There was reduced heart function and some narrowing but good blood pressure.  It made such a difference that there is now discussion of whether she should have her Fontan in a few months.

This echo just raised A TON of questions that will only be answered in her catheter tomorrow.  But the only thing that has changed is that we have increased prayers for her.

So please- the next 24 hours may make the biggest difference in what happens for Tehilla.  Please spread her name everywhere. If prayers are the what it takes than that is what she needs.

Tehilla bat Shoshana

Just Getting Started

We are at the hospital and have checked in and waiting to get started. We already bumped into a member of our blog family and got the best hug to start this hard day.

Tehilla has listed her demands on the car ride over. She NEEDS a special snack. There were more demands that may or may not be met- judging by how our day goes.

We will keep you posted.

Purim

We just had the most incredible Purim. It was filled with laughter and happiness and some of our closest friends. Our seudah (meal)  had 35 people. This Purim was everything that we needed going into this week of the catheter.

I wish I could write more, but there is a lot to get done before tomorrow. 

Tehilla has had a stomach bug since last week- which we are praying is not dysentery. The lab results are pending. If they come back positive we have no idea if it will cancel her catheter or not. She is doing pretty well and I would say it's unlikely that it is dysentery.

Chevk-in starts tomorrow at 9:00 am.

What It All Means

I need to be open with you, my blog family. I need to express myself and I hope you will be patient with me, while I lay it all out. 

I was 17 weeks pregnant when we had a diagnosis for Tehilla of HLHS. I didn't know what oxygen saturation was or what a congenital heart defect was. I just knew there was something very wrong with this little person growing inside of me. Getting pregnant with her had not come easily. And our hearts were breaking in pieces, as we began to learn and read more and more about HLHS. 

All we wanted was a little baby. All. What a ridiculous way of saying it. Anyone who has experienced infertility, secondary infertility, pregnancy loss, or the death of a child knows how weighted that phrase is. All we wanted was a little baby. Ridiculous.  

And there we were. Finally, pregnant with this little girl. A little girl who we had already named Tehilla, even though we had strong plans of other names. We didn't understand why, but from week 8 we had disregarded all other names and could only call her Tehilla.  Curiously enough, a fetus's heart is fully formed by week 8. Huh. The time that G-d had formed Tehilla's special heart, was the time we were praising G-d with her name.

Well there we were at week 17, contemplating terminating the pregnancy. Scared out of our minds and completely devastated. Our neighborhood is completely watered by my tears, and I wore sunglasses to cover up my puffy red eyes. 

Our immediate families knew what was going on and we told 4 other couples. The toll of calling these people each time there was a doctor's appointment or an update was necessary but exhausting and we started updating everyone with an email. 

Heart moms suggested creating a blog to update everyone and make it easier on us- especially once Tehilla would be born. Well, as you all know, this blog caught fire and we have thousands of members of our blog family.

What you don't know is this:

The day that a surgery or catheter comes, is the quietest noisy day possible. As parents, we wake up, if we slept at all, with an ache in our hearts, so great it could kill you. We give each other knowing nods and avoid saying anything. We know that if we open our mouths, we might fall to pieces, unable to support ourselves, let alone each other. We fumble to get ready and try to pretend it is just another morning. But that terrible ache reminds us constantly how very different that morning is.

We get our other kids ready for their days, and kiss them and hug them- hoping that this day will not bring the worst news ever. Hoping that tomorrow will be just as normal a day for them. We make them give Tehilla a kiss goodbye. We leave them in the care of family or friends and set off for the hospital.

Without fail, I insist on leaving much too early. We make it to our hospital and get checked in. We make jokes about anything and everything to avoid talking about what is about to happen. And then they send for us.

From the moment that a porter comes to take us to the heart catheter lab or to the operating room, every second is felt. We are in the most present moment of our lives. We watch Tehilla's cute smile, we stare into her beautiful blue eyes, we stroke her skin. We are taking notes- just in case. Making mental memories of her little voice, her soft skin, the smell of her hair.

Then, one of us accompanies her into the room. We hand our little baby over and have no guarantees if we will see her alive again. We don't know how the procedure or surgery will go, and what forms of support she will come out with. Our entire lives will change in the course of a few hours, and there is no limit to how tortured our mental state is.

We then sit and wait. We are frozen in body, in mind and in spirit. 

During Tehilla's last surgery, I had to run to the pharmacy to pick up some vitamins for myself. I walked through the hospital and then the mall attached to the hospital in a fog. I couldn't understand how everyone was just going about their day, when my life was in such a state of limbo. I was incapable of saying the regular niceties "Hi, thank you, have a good day." I just stared blankly at the cashier. The feeling resembles swimming underwater and hearing some jumble of noises coming from the surface. Everything moves slower and nothing makes sense.

During this time of waiting, we are incapable of praying. We are in shock. It may sound crazy as it is our baby in that room- but we cannot do anything. This is where YOU come in.

Now you can understand what an important role you play in our lives. You pray in place of us. You pray for our daughter, when we cannot. You lift us up and strengthen all of us. Your messages and comments feel like sweet reminders to breath. You force some life into us, when we can barely move. Each of you is essential to our journey.

So, we are one week away. Just one. When I ask you to pray, know that I am asking you from the depths of our hearts and that you are doing the greatest kindness for us.

Home

We are home!

Tehilla is napping and I am going to go do the same. Three consecutive nights of barely any sleep has taken its toll on me.

Our student doctor developed a great relationship with us and asked permission to be present for Tehilla's heart catheter in two weeks. She will oversee our pre and post care.

A huge thank you to our incredible support system. This journey is a difficult one and has a lot of highs and lows. It would be isolating if we didn't have our incredible friends and family that run to help and our very supportive and loving blog family. 

Sigh. And now...sleep!

Going....

Our student doctor just came around and told us that our discharge papers are already printed and ready. 

In short, it's all inconclusive. They believe that they have ruled out endocarditis. Her blood tests do not show any signs of infection, her echo was clean and she is the poster child for health. I mean, while the doctor and I were talking, she was trying to do a somersault. This is not a child with endocarditis. 

They have ruled out serious infections and viruses. One of the directives upon discharge, is that if she gets a fever, we do not treat it with any fever reducing medicines and we run to the ER.

Thank g-d. This could have been scary and we are very blessed

We will either be discharged soon or after rounds. So...HOME!!!
.

Hard Night

We had a great time at home, but of course it was bittersweet, as we had to be back at the hospital for 10:00pm.

Tehilla couldn't fall back to sleep because of our noisy roommate.  Then, she was just too awake. She finally fell back asleep some time after 1:00am.

I hope we have an easy day. I'll update after the doctors do their rounds and I know what the plan is.

Vay-cay 2

The whispers were wrong. We are not being discharged because the questions have not been answered and while Tehilla has no fever now and is completely fine, there's no guarantee that she won't keep getting fevers every few days. They need to know what is going on with her.

We are waiting for her to pee, so that they can test it. Then they are sending us on chofesh (vacation) for the day.

I told her, "They need your pee, so drink a lot." As the perfect two year old that she is, she yelled, "NO! My pee!"

Playrooms

We had a better but still noisy night.

So far, the virus panel came back negative. Which provides some answers but creates a million more. Like why did she get a fever on antibiotics. What was/is she sick with. And there are no shortage of possible answers. 

They are doing a urine test. Maybe it will provide some more answers. 

We love this hospital. Our medical team are always incredible, the nurses are kind, caring and always helpful. It's easy to complain and criticize when there are issues that come up. In an enormous hospital like Hadassah Ein Kerem there are always some personalities and that can taint an experience. But it's just as important to praise and mention the constant positive experiences that we have here.  I plan on writing a letter of commendation for the incredible care we have received. 

Tehilla is at a fun age where we can start enjoying the added benefits of the children's hospital- like the playrooms. They have constant activities and educational classes and workshops.  Today, we discovered a relaxation room with beanbag chairs and disco lights and lots of fun buttons to press to change the settings. 

There are whispers of us getting discharged today. Fingers crossed.

Nothing Like Home

It was only a few hours but it was exactly what all of us needed. Tehilla was so happy to see everyone and we all just needed eachother. 

Tehilla was sleeping when I brought her back to the hospital and only woke up when we were in the hospital elevator.  She started crying and asking for Ron, Mechal and Tzviel.

I am now resettling her to sleep in the hospital crib and praying hard for a decent night's sleep.

G'night, blog family!

Vay-cay

We have been given chofesh (vacation) for the rest of the day. We are allowed to go home and must be back in the hospital by 10:00pm. If Tehilla spikes a fever we must rush right back to the hospital. We really needed this break, so I'm grateful for it.

Tehilla was so happy when we walked in the front door. I feel so guilty taking her back. 

But we must go back until all tests come back. While everyone believes that Tehilla just has another virus from starting school, there is still a chance that it is endocarditis and no one will risk that.

Now for a nice shower, change of clothes, and family time...

Non-Update Update

I was waiting to have some information before updating but since many people are worrying...

I have nothing drastically new to update with. Results haven't come in. They will be keeping us another day until all results come in. We might get to go home for a few hours.

A senior doctor became seriously out of line when I asked questions and asked if cardiology could be consulted on the plan of action.

I'll update more later tonight.

Morning's Here

Last night was pretty difficult for me. We have an uncourteous roommate who made it difficult for Tehilla to fall asleep and kept me up throughout the night. As well, Tehilla's monitor went off frequently from her varying oxygen saturation.  She is stable and well now, at 83.

Today, they will be taking blood to test for endocarditis. We should be receiving results for the virus tests.

It's very unlikely that Tehilla has endocarditis.  She seems well and doing much better today. If she had endocarditis,  she would be in terrible shape.

Our nurses have been amazing and having fun with Tehilla.  In some ways, Tehilla's age has made this an easier hospital stay. I can talk her through things and she is at an age where everything is an adventure.

Noise. Stop. Noise.

It took awhile for a room to be available on the sick kids floor. While we were waiting, Tehilla napped and woke up screaming that her head was hurting. She didn't have a fever. They were waiting for her to spike a fever, to do a blood test. Because her head was hurting they had to give her achemoli (tylenol).

They checked her vitals and her oxygen saturation was very low. It was at 72. Tehilla's baseline is 80-85. They checked her on several machines to be sure.  The doctor came to look at her. They felt that it is because she is clearly sick and not related to a problem with her heart, since they just did an echo and blood tests.

We finally were given a room and have such a wonderful nurse. We are pretty well known in our hospital because of our frequency here and because of the speech that I gave awhile ago at the Pediatric Cardiology Symposium.  So many nurses have come up to us to say hi and remark on how big Tehilla is now.

Because Tehilla's oxygen was low, they wanted her to get some oxygen. They felt it would just be enough to put a tube close to her face.

It was enough and brought Tehilla's oxygen to 80...until Tehilla learnt a little game. When she moved the tube away it made an alarm go off because her saturation went down. "Oh! A noise!"

When she moves the tube close to her face, it stops and her saturation goes up. "Yay! It stopped!"

"Noise! Uh- it stopped. Noise. Stop. No more noise, Mama. Noise!"

Well as you can imagine, the nurses were EXTREMELY unamused by their heart patient's alarm going off constantly.  Once they saw what she was doing, they had to switch her to a cannula.

We told Tehilla that it's a special necklace and she is super excited. No child has ever smiled so much to be fitted with a cannula.

Admitted

Tehilla had her blood taken and she had an echo. She had an xray at the doctor this morning. Everything looks great.

Our cardiologist and the doctors think there is a very low chance that Tehilla has endocarditis. (Que an applause and many thanks to G-d).

HOWEVER,  Tehilla has been in the ER twice in the past two weeks, on antibiotics twice in a month and seems to have a fever every 3 days. Everyone believes she is just catching every single bug and virus at school, but no one wants to take a chance and everyone wants this constant back and forth to the hospital and doctors to stop.

So they need to know beyond a shadow of a doubt what Tehilla has right now. There are blood tests for determining viruses that can only be done in the hospital. They have already started some blood tests. Tehilla needs to be off antibiotics for 24 hours for them to test against endocarditis.

They are admitting us until at least late tomorrow and watching her closely.

Another Day, Another ER Visit

Over Shabbat, Tehilla was not acting herself. She was cranky and needy and then developed a fever. She has a fever and a runny nose. I checked her oxygen saturation and it was fine. Her fevers continued all last night.

So this morning, we went to see our doctor.  With Tehilla,  all fevers need to be checked out.

For the past few weeks, Tehilla has been sick nearly every 3 days. Twice she has received antibiotics on the past month without a complete confirmed diagnosis.  She is still on antibiotics and has a fever now.

There is a good chance that she just has another virus, but because it's Tehilla - there is also a chance that she has an infection in the foreign material in her heart. It's called endocarditis.  That is the worry and that's why we are on our way to the ER.

We are being sent for a bunch of tests and an echo. Let's hope that it is nothing more than a virus.

Please pray for Tehilla.

Just Enjoying

We have just over two weeks until the catheter. Our way of coping so far has been to push it out of our minds. We have not told our two other kids yet. We did not want to give them all the extra time to worry.  But we will have to tell them in the next week.

Until then, our family has launched full on into just enjoying the blessings around us and making preparations for Purim. We have been planning our costumes since the day after last Purim. Tehilla has changed her mind many times and honestly, she better settle on something soon, or she will have nothing to wear.

But we are not shying away from the festivities and are hosting a Purim seudah (meal/party) with probably over 30 people. Despite it being 3 days before her heart catheter. We are celebrating Purim in the biggest way we know how and filling our home and holiday with joy.

Tehilla is loving school and overall happier. She makes sure to save some of her mischief for when she gets home. She had strept throat over the weekend and very sweetly shared it with me and now Ron. Thank G-d we are all on the mend.

I've been having a lot of thoughts about gearing up for this catheter and I'll try to post later.