Wednesday, December 31, 2014

Nothing But Ups

A quick update for you before I head to bed:

Our ever ravenous piggy is finally showing some results! At last weigh in about two weeks ago, she was 7.3 kg, 16.06 lbs.

Yesterday, we weighed her and she went up to 8.2 kg, 18.04 lbs! She now insists on only eating what we are eating and of course, we have to give her "our" food. It is absolutely forbidden to replace our food and give her the exact same thing. I can now be found hiding behind cereal boxes trying to eat my food in peace. She knows something is up...

Tehilla has also started to let go of the couch but stand next to it. It has resulted in quite a few falls to the floor, but it's a step in the right direction!

Thank you, G-d, for nothing but positive things to write about!

Monday, December 29, 2014

Heart Diva

Heads up: Normal baby reporting ahead! (Thank G-d! )

Those baby blues, dimples, and princess pink (Yay!) lips may look innocent and charming, but this little heart warrior princess is starting to pack some serious attitude. While she may have half a heart and be a late bloomer for growing hair (where is that hair???), she has decided to bring on the terrorism associated with toddlerhood early.

Lately, she doesn't just shake her head no or push something away when we have selected incorrectly from her little majesty's command of "this". Now she shrieks.

She also may or may not have smacked a few family members and may have started demanding other people's possessions. So, we have started to discipline her by gently saying, "No, Tehilla, that's not nice. We don't hurt people..." On the mere utterance of the word "No", her bottom lip sags and pouts, her eyes fill with tears and she screeches some more. We can be so insensitive sometimes.

But she is healthy and well, thank G-d, so we shrug our shoulders and say, "With G-d's help, this should be the worst of it."

Saturday, December 27, 2014

No Worries

I apologize for being incommunicado for several days. We went through several bad nights in a row with Tehilla which left me walking around like a zombie. Tehilla was waking up the past few nights at 12:00 am, 1:30 am, 2:00 am (wouldn't want to miss out on an opportunity), 4:00 am and then 5:15 am for the day. She was hungry. No, not hungry- famished to the point of psychotic screeching.

So, the past few days, Ron and I have been walking around, exhausted beyond belief, finding ourselves in rooms of our home, not remembering why we went there, or even how we got there, calling people, with no memory of the purpose of the call and- well, you get the idea.

Last night, G-d bless her, she only woke up at 12:00 am for a drink of water, but then slept until 6:30 am. seems, Tehilla is starting to put on some weight, finally. I hope that the past few nights was the result of a growth spurt. She is chubby-ing up and developing a second chin...or a third.

She is still eating around the clock, but still loving her smoothies. I have been sneaking more and more healthy fatty ingredients in there, and she is not noticing. We actually refer to them as "fat smoothies".

We are coming up to a month post-surgery- the time that our cardiologist gave us to keep Tehilla infection free. After that, she is allowed to be exposed to people, again. The thought gives me such mixed emotions. I keep thinking myself, "So, we're just going to take her around people? Groups of people? That's insane." Then, I remind myself that that's what normal people do. It's amazing the way that this entire journey has changed us. Sometimes, I have been out and will see a mother with a very young baby in a crowd of people, and I feel like charging up to her and shouting, "Are you crazy? Don't you know the dangers that you are exposing your baby to????" Then, I kind of slap and shake myself and remind myself to get a grip.

So, I'm anxious but insanely excited. We miss our friends and we miss spending holidays and events with them. So, we are ripping off the band-aid and having Tzviel's 5th birthday party this week at our house. Filled with kids and our friends and family. We're just diving into it and going to have a blast, hopefully.

Tuesday, December 23, 2014

Eighth Night of Hanukkah

Happy eighth night of Hanukkah! May this light always shine in our lives and we should always remember that miracles can happen at any moment. Our little miracle is sleeping right now, after a fun day of playing, exploring and eating. G-d is good.

Monday, December 22, 2014

Seventh Night of Hannukah

Happy seventh night of Hannukah!

Today, I took Mechal and Tehilla to a park. Tehilla had a great time playing on the slides and seesaw. It was pretty cold and windy out, but take a look at Tehilla's lip color! Still pink! We put Tehilla on a spring rocking horse and she said, "Weeeeeee!"

Tehilla is only a year and two months, but we are starting to see some definite terrible two behavior. It's actually quite funny to watch such a little person absolutely lose her mind. Today, she freaked out because Mechal touched the spring rocking horse park toy. How dare Mechal. It is clearly Tehilla's. Thankfully, Mechal is old enough to find it just as amusing as we do.

Thank G-d, for normal toddlerisms!

Saturday, December 20, 2014

Fourth and Fifth Nights of Hanukkah

I did not have a chance to update the blog before Shabbat started. Happy fourth and fifth night of Hanukkah!

Tehilla's chest tube scar has been healing nicely. Tehilla has spent the last two days constantly eating and being hungry.  She will finish eating a meal, get cleaned up and as soon as we put her down, she starts smacking her lips and pointing at food all over again.  It's been out of hand. 

I had a breakthrough in fattening her up. This blog has been amazing in so many ways. It has exceeded any expectations that I had since this blog gained attention. People are inspired and praying for Tehilla, and I believe that it has played a huge roll in her wellbeing.  It has also spread a lot of awareness about congenital heart defects.  It has aided in the creation of Little Lev... I really could go on, but it's late. 

One of the added bonuses that we have gained from this blog is this great big extended family. I truly mean that. There are so many people that have become a part of our lives and many of them write to us. And like real relatives, you send us unsolicited but incredibly helpful advice. And it just shows us all the more how loved we truly are. So a very big heartfelt thank you. 

We were sent a lot of advice on how to fatten Tehilla up. Almost everyone had the same tricks and tips.  And I really have been listening. I made Tehilla a smoothie from yogurt and juice and am slowly and sneakily hiding fattening and nutritious ingredients in it.  Little Tehilla is, thank G-d, none the wiser and is loving her delicious smoothies. I'm working on many of the other suggestions. Thanks for the help!

On Friday night, Tehilla fell asleep on my chest, while I was sitting on the couch, waiting for Ron to get back from shul (synagogue). Tzviel and Mechal were playing pretty nicely together. Somewhere around the time when Tzviel's pirates had captured Mechal's Polly Pocket and was going to feed her to his dinosaur, but Batman, Superman, and Flash saved the day...I closed my eyes. I was immediately transported to that family beach day from last summer. I remembered the waves, and the distant sound of children playing in the water. Most of all I remember the feeling that I felt when I let go. I let go of the anxieties and fears that were a constant presence and I just enjoyed a snuggle with my baby daughter on the beach. 

I got to re-experience that feeling again. I just enjoyed a wonderful snuggle with my baby daughter on a relaxing Friday night at home. I was not thinking about her heart function or her blood pressure. It was just me and my family. I ended up having a peaceful little nap with Tehilla. With Tehilla's Glenn surgery behind us, I hope to have many more wonderful moments like that again.  

Thursday, December 18, 2014

Third Night of Hanukkah

Tonight is the third night of Hanukkah!

Tehilla is having a problem with a scar from one of her chest tubes. It is hurting her and a bit swollen. We have already spoken to our nurse and sent pictures to our surgeon.  We were told to clean it well and disinfect it and resend them pictures tomorrow.  It is already looking somewhat better. With G-d's help, it will clear up without incident.

Tehilla overall seemed less cranky today and is back to stealing her big sister's headband.

Wednesday, December 17, 2014

Second Night of Hanukkah

Another yummy fattening Hanukkah treat is chocolate coins. Luckily our friend brought some for all the kids.

Today, Tehilla got her second RSV shot. She was also given her second portion of the flu shot. She has been acting very cranky, since we got home. 

Tonight is the second night of Hanukkah. Happy Hanukkah to you!

Also, toddlers cry when their Ima won't allow them to touch the fire. Yes, she had a full blown temper tantrum. 

Tuesday, December 16, 2014

First Night of Hanukah

Happy Hanukah from our family to yours! May G-d always shine light into our lives, no matter how dark and helpless the situation may seem. Believe in miracles, they are all around us. For us, they exist in our smiley, blue eyed daughter with half a heart. Thank G-d!

Our Miracle

A family that is near and dear to our hearts, with a HLHS heart warrior son, sent Tehilla this shirt, after her surgery. It says, "Nes Gadol Haya Po", which means "A big miracle happened here". These are the four words that are symbolized on a sivivon or dreidel (a top). It is a commemoration of the great miracle that happened during the time of Hanukkah.

We still have not fully grasped the reality that our daughter beat all odds and survived her surgery and is now thriving! There is no other explanation, than to understand that G-d intervened on all of our behalf. She is a miracle!

We absolutely adore this shirt! Thank you!

Monday, December 15, 2014

Unmixed Emotions

We went to see our family doctor to discuss the cardiology appointment and to get the proper referrals. 

Our doctor agreed that it was thorough to check Tehilla's kidneys, however he reassured me, "It's possible something could be wrong with her kidneys but not probable. We're just being sure."  That helped me breath a bit easier.

I asked for a prescription of EMLA, a numbing cream, so that I can be sure that it is applied each time Tehilla needs a blood test. Got it.

As well, I discussed earlier with our nurse and cardiologist and now family doctor, about sending Tehilla for some physical or occupational therapy.

Tehilla is completely within the spectrum of normal development.  She is walking along the furniture but has not let go or tried to walk on her own.  There is nothing wrong with the way she is developing- however after three surgeries, three heart catheters and numerous hospitalizations, we have no way of knowing if it has impacted her development. It can't hurt, it can only help her, and with socialized health care, it's covered. So there is no reason not to go for it and she more than qualifies for an evaluation just based on her medical history.  Everyone agrees it's a good idea.

I also got a prescription for a blood pressure device.  I will get help from our nurse friends on learning the proper ways to take blood pressure measurements as well as how to read them.

So, overall a good productive day.

Mixed Emotions

This morning, Tehilla crawled into Mechal's room, found Mechal's headband and quickly crawled out of her room with it. She then spent several minutes trying to get it on her own head. I helped her put it on and Tehilla said, "Oooh. Wow!" I let her wear it today. She entertained everyone with her headband and if I took it off, she would insist on me putting it back on her head. 

Tehilla had her appointment with Dr. Golander and an echo. Tehilla loved the echocardiographer that did her echo and did not cry or even move whatsoever, until our cardiologist came into the room. 

There has been a slight improvement in her heart functionality.  When we discuss her heart functionality we are talking about the muscles in her heart and how strongly they are able to work. Because hers are weakened, she is considered to be in heart failure. The question is why. 

After, our nurse took us to weigh Tehilla and check her blood pressure. She went up in weight: 7.800 kg and her blood pressure is very very high. 

We went to discuss this with Dr. Golander.  She is on Enalapril for blood pressure. He was actually happy to have found a reason for her moderately reduced heart function.  Her blood pressure. So now the question is, why is it so high?

It could be that the Enalapril is not working for her. They have many different medications for heart kids that we can try. If that is the problem.  

Her blood pressure being high can also be an indication that there is something wrong with her kidneys. So, we need to check this out first and hopefully rule it out. She will have to go for an ultrasound to make sure there is nothing anatomically problematic with her kidneys and a blood test to check her kidney function.  

If there is nothing wrong with her kidneys, please G-d, then we switch medications for her blood pressure. 

We see Dr. Golander again in a month. He wants her to have her blood pressure routinely monitored. We are looking into buying a blood pressure measuring device for our home. It may be tricky to find a blood pressure cuff for her size. 

There is more to update about, but now we have to go talk to our family doctor.  I will update again later. 

Please please please pray that Tehilla's kidneys are perfectly normal and fine. 

Sunday, December 14, 2014

Gobbling Fatty Foods

Tehilla is now almost entirely pain free. She had a wonderful restful Shabbat, as did all of us. She is happy to be at home, sleeping in her own crib and back on a normal nap/sleep schedule.

As for the eating fatty foods: Well, as it turns out, we are a few days away from the wonderful holiday of Hanukkah. One of the most delicious traditional treats of Hanukkah is a sufganiyah, a jelly doughnut. Actually, calling it a jelly doughnut, feels slightly sacrilegious, as it is a soft and sweet fried pastry, and depending on which store you go to, is filled with jelly, caramel, chocolate fudge, Irish cream...etc. The bottom line is that it is categorically impossible not to gain weight from eating one.  Tehilla wasted no time devouring it.

We have been feeding her plenty of healthy fattening foods, as well, and trying to sneak in scoops of pediasure (she hates the stuff) into her food. I will be trying many new things to fatten her up.

Tomorrow, she goes back to see her cardiologist, Dr. Golander, for another echo, to see if there has been an improvement in her heart function. Please keep her in your prayers!

Thursday, December 11, 2014

Extra Fat Thoughts

This morning, I was talking with Tzviel, our nearly 5 year old and I asked him if he was happy that Tehilla and I were back home. He said, "I'm so happy that 'Telulu' is back and you! I missed you. Please don't take her back to the hospital! Please? Okay, Ima?"

I told him that Tehilla had a surgery that really helped her heart and that she will only need one more surgery, but that won't be for awhile. "We are not planning on going back to the hospital. But as long as she stays healthy, she shouldn't need to go back to the hospital."

He said, "Hmmm. So, no getting sick. I'm going to make sure she doesn't get sick, Ima. I will kiss her everyday, and when I'm sick, stay far away and blow kisses everyday."

I told him, "That really might work."

Tehilla's pain has gone down incredibly. I am still giving her Optalgin and sometimes Tylenol, but infrequently. 

We went to see our family doctor today. He was thrilled to see Tehilla and hear about her miraculous surgery and recovery. I went over the medical papers with him.

Then we discussed Tehilla's weight. She weighs 7.690 kg. She is below the 3rd percentile. She had dropped weight before the surgery. It is expected to lose weight after such a serious surgery. But now, we need her to gain weight- and a lot of it. She is a very picky eater (she loves pasta and bread!) and even though, before the surgery, she was constantly eating and constantly hungry, she was not putting on any weight.

Our doctor said, "Think of the most fattening foods and give it to her. You said that she likes deli, give it to her often. And if she would like a side of ice cream with it, do that. Feed her butter and very high fat foods. She must put on weight."

I asked him, "But shouldn't we be worried about her eating heart healthy foods?"

He said, "G-d willing, when she is over a hundred years old, we can worry about cholesterol. Right now, she needs a very calorie dense diet."

I asked him, "I understand, but what about in a bit of time, when she has caught up on the weight, doing all this will give her terrible eating habits."

He said, "You're right. But her gaining weight is a huge priority now. Let's worry about that later. Right now, we need her to gain a lot of weight."

So, I will be working hard on fattening this little one up. I will by figuring out ways to hide foods in the foods she loves and buying her all the fattiest foods that I can find. We will have to weigh her regularly.

Once again, please send extra fat thoughts her way. 

Wednesday, December 10, 2014

Home Sweet Home

Please excuse the macaroni and cheese all over her face. As it turns out, Tehilla is not a fan of hospital food, but she was more than happy to shovel three servings of macaroni and cheese into her mouth, as quickly as her little hands could scoop it up.

We got home and she immediately crawled to all the toys and started crawling from room to room, as if she was checking that everything still was where it should be. She is so happy to be home, in her own surroundings, far away from IV toting doctors and blood pressure cuff carrying nurses.

Good night, my dear blog family. This heart mama needs to recoup some sleep. Thank you for being with us through every step of this journey.

Two Thumbs Up

Tehilla had her sedated echo and they allowed me to stay in the room. Her pulmonary arteries look excellent.  Really wonderful. 

Her Glenn is working perfectly!

Her heart function looked a bit better- but that's only because she was sedated.  It's not a realistic look at her functionality because she isn't exerting herself even a little bit. 

Our discharge papers are being written at this very moment. We have an appointment with Dr. Golander in 5 days and another one in two and a half weeks.  They will be looking at her heart functionality to see if the medications are helping. We also see Dr. Erez, our surgeon in a month.


Sedated Echo

She will be going in for her sedated echo at 1:00 pm. Please pray that the echo shows that her pulmonary arteries are doing well and even that her heart function is better than what they saw yesterday.

Now Fasting

We had a fairly good night. Tehilla went to sleep very late but then slept until 3:30 am, when she needed some pain medication. 

She is now fasting but can drink until 11:00 am.

I'm sorry, she didn't have time for pictures. She was too busy talking on the phone with "Mich" (Mechal).

Tuesday, December 9, 2014

Not Going Home Tonight

Tehilla is scheduled for her sedated echo at 1:00 pm tomorrow.  She will have to fast from 7:00 am and stop drinking water from 11:00 am. They will reinsert an IV.

Dr. Erez, our surgeon, came to see us. And our cardiologist just came to talk to us again.  He explained that at the time of Tehilla's surgery, her heart function was great. But she was sedated. Now, she's awake and eating and drinking and crawling and playing.  Now her heart is actually working and we see the real functionality.  And it's not good.

The Glenn was completely successful.  We see that by how great her saturations are (78-83) and her head is not swollen. It worked. (Yay!!!) (Thank G-d!!!)

They must see her pulmonary arteries to make sure that everything is okay. They have no reason to believe that anything is wrong. But they can't send us home until they are sure.

Now, they have to get her heart functionality better. We are strictly talking medications. The way to do that is to lower the blood pressure and lower the resistance. So, we will be adjusting medications and if need be adding medications. So far, it's what I wrote before: Enalapril is going up to the highest possible dose for her weight and we are restarting Digoxin.

So, we are here for another night. We are top priority to get a room.  But I guess that fright put things in perspective.  Thank G-d, her Glenn was successful and thank G-d, we can manage this problem with medications. 

Yes, it's another night here, but you know what, in the grand scheme of things: less sleep and a gross shower really are not that big a deal.

Our miracle baby is great. That's really all I care about right now.

Pain Improvement

Something positive to report is that Tehilla's pain is considerably less this morning.  She is no longer in agony as the time comes close for a new dose. She is calmer.

Right now she is fasting, as she will most probably get her sedated echo today.

Not Good

I wish that I had better news to share.

Tehilla just had her echo with Dr. Golander.  First thing is first, he couldn't  see her pulmonary arteries because she was screaming too much. She will need a sedated echo- where they sedate her and do an echo, soon. The problem is that she has already had all her IVs taken out. They are talking to the anesthesia team to figure it out. The sedated echo will either be later today or tomorrow.  In any event, we will go home tonight and if the sedated echo is tomorrow, she won't be discharged officially, and just allowed to sleep at home.

The second part is that her heart functionality is not good. She will be given the absolute maximum dose of Enalapril and put back on Digoxin to try to improve her heart function.

He wants to see us again in a week.

My initial reaction is to feel defeated, but that can't be my reaction.  We had a miracle happen. Let's just ask again. Yeah?

Can we get the prayer wheel started again?

Contagious Happiness

Last night was extremely horrible. Tehilla didn't sleep. She was irritable, overtired, and sometimes in pain. After our nurse called the head nurse of this floor, no one is objecting to any medications for Tehilla. 

So, by the time the morning came around, no amount of makeup was going to change the purple bags or the throbbing headache.

We walked to the mall that is adjoining the hospital to get coffee and something that Tehilla would eat for breakfast. 

On the way, we passed nearly every pediatric cardiologist and resident. They all are familiar with Tehilla's case.

Their faces were all shining with huge smiles, as they strained to see Tehilla, the baby that astoundingly survived the surgery and recovered against all odds.

They just couldn't contain their excitement. 

It made me reflect- am I really going to be cranky because of a lack of sleep.  Really? A miracle happened to my child. That is where my head needs to be.

Today, Tehilla will be discharged from the hospital- 6 days after G-d said yes to our prayers. 

We just had our echo. I'm writing the findings in a separate blog post.

Monday, December 8, 2014

Not Fighting

Again, the nurse that we actually haven't had a problem with all day, refused to give Tehilla her Optalgin.  She wouldn't listen that she is supposed to get it regularly.  She insisted thst it's only for a kid who is suffering.  I said, "She had heart surgery 4 days ago. If she is suffering, we have responded too late."  I argued with her until she gave it to her.

I just called our cardiac nurse, Yifat and told her I can't fight all night.  She is calling the nurses station now to make sure Tehilla is given her pain meds around the clock.


Much Better Now

It took awhile, but we finally got Tehilla's pain back under control. She ate a bunch of food and is now in a very happy playful mood. 

Unfortunately the ward is too full and they do not have any space in the rooms, so we are staying in the big step-down room.

Knowing that it is only for one night, makes it manageable. 

I am in awe of this entire situation. We have been granted a miracle. And now, Tehilla is post Glen and we shouldn't have to talk about surgery for awhile. We- a collective we, meaning you, as well- did it!


We had a fairly okay night. Tehilla is doing very well when she is pain free.

Unfortunately our night nurse did not agree with Tehilla's pain management regiment and woukd nit give it to her often enough. So, right now Tehilla is in pain and we are waiting for the Optalgin to kick in.

Tehilla's gag reflex is very hightened and between all the pain medication and other medications she is gagging. I'm making a big effort to not give her medicine after eating and to do everything possible to keep her from throwing up.

Other then that, she is doing very well.

Our surgeon and cardiologist just came to check her. They are very happy with Tehilla's progress. Her pain is within normal for post-Glenn.

They are trying to have us switched to a regular room in the post-op ward.

Tomorrow, Tehilla will have an x-ray and echo. If everything looks good, we go home. Tomorrow.

Glenn Beautiful

Many of you have commented on how great Tehilla looks. I want to show you some of the changes the new Glenn circulation has made.

The Glenn provides a new and better quality circulation. Many of you love and are fond of Tehilla, but may not have noticed how purple her lips were. The tip of her nose and eyelids were purplish, as were her fingernails. She also had a purplish tint to her skin. In fact,  Dr. Golander would jokingly call her "Dardaseat" - Smurfette in Hebrew.

Look at how pink her lips are! Her nose and eyelids have a normal skin color and her general skin color has changed to a pinkish tint too! You can really see the changes between these two pictures.

Dr. Golander will need a new nickname for her!

Sunday, December 7, 2014

Eating My Words

Let this be a lesson to me not to assume the worst and go into a situation with a negative attitude. 

I was wrong.

We have had a pretty good experience on this floor. Yes, the room is noisy. Every step down ward in any hospital has a primary goal of transferring responsibility and care for the patient, on to the parent. Without it, parents would not be able to care for their post-op recovering children. And it's hard. And you aren't given a huge learning curve. But it's necessary.

The truth is that the fourth floor gave me the ability to soothe Tehilla in ways that the PICU couldn't.  In the PICU, patients do not get out of bed. They are in a critical state.

But on the fourth floor, I have been able to stroll Tehilla around in her stroller. For her, this is possibly the most relaxing thing. She is also able to look at the fish aquarium, which provides endless entertainment with a side of relaxing effect.  

The fourth floor is noisy, so I find better means of helping Tehilla.

Our nurses here have been absolutely wonderful.  I clearly explained the importance of Tehilla's pain medication regiment and they responded with clear instructions, "I'm so happy you told me this. I will be running all over, so please don't let me forget." They all have been very easy going and helpful.

I was wrong. Tehilla was ready to move down and it has been a positive experience and she is thriving because  of it. I'm going to remember this lesson for the future. 

Tehilla is sleeping in her stroller, purposefully, as the raised height reduces the pressure in her head.

She is improving considerably and our surgeon couldn't help smiling when he saw her this evening. 

Thank G-d for all the good in our lives. For the open miracles and the discretely hidden miracles that mask themselves as nature. Thank G-d for our wonderful friends and family and all of you that have showed us a constant outpouring of love and support.

Looking Good

Here's the thing: they have managed to regulate Tehilla's  blood pressure.

When she is pain free, she eats, drinks and is playful. When her pain medication runs out, her blood pressure understandably goes high and she won't eat or drink. She is irritable and a mess.

So, as long as we keep Tehilla pain free and let her recover, we may be moved to a room tomorrow and be sent home by Tuesday. 

Pain Treatment

Tehilla is in a considerable amount of pain. The achemol (tylenol ) does nothing for her and as soon as the Optalgin wears off she starts to cough a little cough and you can see how severely it hurts her.

So, we're dropping the achemol and adding Nurofen (Ibuprofen). It's not usually given to heart kids on Aspirin, but our cardiologist gave the okay.

They will alternate the two medications to make sure she is never without something.

Please pray that her pain be relieved and subside quickly.

Our nurse believes that her surgery's success was a miracle. I believe that too. We need more prayers so that she continues to recover nicely. That is clearly what has made all the difference. 

Dr. Golander Visit

Dr. Golander came to check her! He was so thrilled to have heard how well she did with the surgery! I told him about what happened with the PICU last night and he actually agreed with me. That felt good to hear.

He said that pain management was the key to her recovery and to push and advocate as much as possible to ensure she gets pain medication on the new schedule. 

He wants her eating and drinking more. He's overall happy with how she is doing. He will be switching her blood pressure medication back to Enalapril. 

Post surgery she needs to avoid people for a month, because any infection can be very severe. But post-Glenn life is safer and easier. We did it!!!

Everyone is overall really happy with her recovery and that we made it to the Glenn. 

Both Dr. Erez and Dr. Golander loved the wearing red to support Tehilla and spread awareness.  They want to see the pictures! Now that we are on this floor, I have nowhere safe to store my computer.  When we get home, I will post all the amazing pictures we received.

Staying positive

We really have no choice but to stay positive, because the latter would be to tell you how the thermastat isn't working in the big room on the fourth floor and it's sweltering hot. Or that the father in the curtain over from us screams in his sleep and snores loudly.  See how I didn't talk about that?

Tehilla threw up yesterday and won't eat or drink.  Dr. Erez came to check on her. He wants her pain medication given on a different schedule.  He made it clear that we are staying in this big room for a day or two. So, we are going to make the best of a difficult situation. 

I put Tehilla in the stroller and she seems much more relaxed. We are walking all around and I took her to see the fish, which are thankfully not dead on this floor. This has calmed Tehilla considerably. She has now eaten a slice of bread. 

I'm hoping that if her pain is managed better than she will recover faster and maybe we won't be here for much longer. 

No Choice

A senior doctor came in earlier to talk to me about Tehilla moving to the step down floor. He explained why she was ready and I explained why she was not.

They just woke me up to tell me that they needed the room and we are moving now.

Saturday, December 6, 2014

Loud Choice Words

Sometimes if you make a big enough can make yourself heard.

The doctor came in about two hours ago and announced we were being moved down to the post-op ward. The infamous 4th floor. The reason was that the PICU suddenly had many emergency cases and there was no room.

I very forcefully demanded we not move, that Tehilla was not stable enough. That she was only two days after heart surgery and they haven't even gotten her blood pressure under control.

They felt she was stable enough and they could manage her blood pressure downstairs. They had checked with our surgeon who gave the okay.

I told them that they were only moving her because they had no room and they were not doing what was right for her. She has terrible headaches and they were moving her to a noisy room with eight patients and all their families.  That on the fourth floor I have to chase nurses to get the medication she needs, how on earth do they think her pain management will be handled. 

The doctor asserted that he has emergency cases coming in and doesn't have the room. I told him that was his problem and it had nothing to do with my daughter.

The arguing went back and forth between myself, Ron, two nurses and the doctor. We went to pack up our stuff and when we came back, we were informed that they moved some people around and we were staying in the PICU, but probably only until the morning and if there were more emergencies, we may have to still move.

There's a bit of a tense awkward feeling now, but I will manage. The nurses change in 45 min anyways. Hopefully the doctors as well.

Tehilla is resting although her body language shows that she is irritable and probably has a headache. 

Shabbat of Ups

Tehilla overall has been doing very well. She has had many things removed and has been stepping down beautifully.

She is having trouble with urine output, so she is on Fusid.  She is having trouble with high blood pressure which they have been unsuccessfully treating with Captopril. They are gently raising the dose more and more.

They are on top of her pain management with Achemol (tylenol), Optalgin, and Morphine when needed.

Because of the changes in pressure in her head, she has had many moments of irritability and headaches. We had one of our favorite nurses and Tehilla was clearly agitated and stressed out- she was pulling her hair. I called our nurse over and we were trying to calm her. Tehilla threw her pacifier at her. "Yup, I'll go get her some morphine."

But she also had plenty of happy, playful moments where she ate tons of food, made animal noises, played with some toys and listened to the books I read her and the songs I sang her. 

Nothing she is going through is unexpected. It seems that once they get her blood pressure under control, we may actually go to the step down floor.

Also, exciting details: Tehilla's saturation has been between 77-82!

Not sure if anyone recognizes Tehilla's beautiful hospital gown made specially for her by our heart mama friend, Rebekah! Go to to be part of the beautiful things she does!

Friday, December 5, 2014

Miss Hungry

Correction: She ate two whole yogurts and wants more.

She was given morphine, so we want her to take it slow so she doesn't throw up.


Look who woke up and ate 1/3 of a yogurt and drank another 100 cc.


We've got a determined heart warrior over here! She is setting her own limits.

There are two schools of thought 1) take it nice and slow, administer medications to relax her and gently ease into step down 2) give pain medication, keep her alert and go for it.

The doctors thought the first approach would be better. Tehilla disagreed with their professional opinion.

She is determined to wake up and had them remove everything from her face or she would do it herself. Then she cried and smacked her lips together, until they agreed she could drink- a little bit.

Well,  she grabbed that sippy cup and started drinking fast. They brought me a bottle so it would be a slower flow.  She finished the bottle and we gave her more.

The doctor came in to tell us to not allow her to drink more than 100 cc. Um...she already drank 160 cc.

Now she's sleeping really well and her vitals are perfect. They have requested her favorite foods from the kitchen.

With their permission, I gave Tehilla a foot massage using the essential oils blend that was custom made for her. Again, I'm a skeptic, but who doesn't love a foot massage!

Our nurse is amazed at her recovery. She is flying through their steps.

Thank G-d for a miraculously successful surgery and an astoundingly amazing recovery!

Doing Great

Tehilla has been extubated. She cried immediately, which is a great sign of her being vigorous. 

They already removed one of her chest tubes and some chest wires. 

They will start taking more things down slowly.  They are going to remove her feeding tube now and soon start giving something to eat by mouth. 

She is stable and doing extremely well. 

Getting Ready- Please Pray

They are going to be extubating very soon. They gave taken her off sedation and she is starting to wake up a bit.

Dr. Erez was just here and is very happy with how she is doing.

Please pray that her extubation go smoothly without complication and that she continue to make miraculous steps towards recovery.

Good Morning Beautiful

Tehilla had a good night. She remained stable and is doing well.

They decided not to extubate her last night because she had a few fluctuations, but also because they wanted specific senior doctors to be here for it, and they had already gone home.

They will be extubating her this morning at some point.

Thursday, December 4, 2014

Challah Love

Thank you to everyone that participated in the challah baking for Tehilla's merit. There is no doubt in my mind that it made a difference.


I can get used to the word "excellent", especially when it comes from our surgeon. He just came to check on Tehilla and he said her numbers are excellent. She is doing really well.

Our little heart warrior princess rock star is kicking some Glenn butt! Of course, baby steps... but I may do a little dance later, when no one is looking.

Thank G-d!

Holding Well

Tehilla has had a few fluctuations, but for the most part, she is doing very nicely. They are planning to try to extubate her in a few hours.

Here are two pictures of our beautiful cardiac nurse, Yifat and Liz, Dr. Erez's secretary- both wearing red for Tehilla.

Stable Again

She is stable again. She had a bad reaction to a medication change.

Pray now

Her vitals just went complete haywire.  Pray now.

Thumbs Up

She looks great. She is barely swollen. Her saturation is at 79 and heart rate is at 140. Her color is great.

She has wonderful nurses helping her. Overall, she is stable and doing great. The next 24 hours, there can be many changes, but for now, big thumbs up.

G-d, thank you.  Thank you for all of the major successes today has brought. It truly has been a day of miracles and answered prayers.