Sweet Dreams

Good night everyone! 

Team Tehilla

We are just waiting for our discharge papers. But I have to write this:

Thank you to our families that helped in all the behind the scenes child care, food,  and stability. Thank you to our friends for the meals.

Thank you to every single one of you. You are all a part of Team Tehilla. Your prayers were the true force behind Tehilla's recovery. Your blog and Facebook comments gave me and Ron so much encouragement. We all played a part in this insane and risky journey. From the bottom of my family's 4.5 hearts, thank you and so much love. 

HOME!!!!

"Echo looks great, now get out of here."

Echo was great! I even got to see the BT shunt. We are just doing an X-ray and then Ifat will take out her stitches.

Then we go home! No more screaming kids or middle of the freaking night wake ups!!!! 

We come back for an echo and check up in a week. 

Home! I will be breaking out in song and dance. 

Inconceivable!

Dr. Golander came to check her. I figured I had nothing to lose, so I went for it. I told him that the only reason we are still having trouble is because my milk is low and she is adamant about nursing. 

He said that it is a usual fall out after heart surgery that there is some regression in eating. He asked if we wanted to be moved to a room. I said, well, actually hospitals aren't conducive to sleep. Everything will go back to normal if they let us go home. Then I held my breathe. 

"I think it's conceivable that you should go home. Let me talk to Dr. Erez."

Dr. Erez and Dr. Golander came in a half hour later. They looked over her charts and asked me if I felt comfortable taking her home. "Extremely". I repeated everything again and they nodded their heads. 

"Alright. We'll do an echo and if everything is good, you can go home after we take out some stitches."

Now is where I curtsy. 

We are doing the echo now. Hold your breathe. 

Ugh

Last night was a nightmare. Tehilla is refusing to eat anything but nurse. She clamps her mouth shut and spits out any formula I manage to get in. I even tried with a syringe. She's a smart little cookie. 

My milk is low. She is not getting enough to eat, so she is going down in weight and is irritable. She is barely peeing because she doesn't have what to give. She is not dehydrated. She won't sleep because the poor little girl is starving.

Last night it took me 3.5 hours of her screaming to get her to sleep. I broke the rules and nursed her every two hours last night. I walked up and down the halls with her in my arms or her in the stroller. I even put sugar water on the nipple of the bottle. She adamantly refused. She finally fell asleep at 2:15am. I fell asleep too. 

We have had really great nurses until now. At 4:00am, a different nurse came to check her diaper and take her vitals. She did not like that our nurse hadn't done it yet, because I had been struggling to get her to sleep and now we were finally sleeping. She wanted him to have done it already, even though he told her we had a horrible night. So I wake up at 4:00am to her lowering the crib. 

"What are you doing? You will wake her."

"Her blood pressure needs to be measured and I want to check her diaper."

"No. Don't touch her. I spent hours getting her to sleep. You absolutely cannot wake her."

"But I need to check-"

"Nothing will have changed in an hour or two. Go out now and let us sleep."

"No, I-"

"No, you don't. In an hour. Bye."

This morning Tehilla was finally hungry enough to eat 70cc of a bottle. I bathed and weighed her. She went down 10g. She weighs 6.165kg. That's really not that bad. 

Here's the thing, my milk can't build up without sleep and if I'm stressed. But I can't get any sleep in the hospital. And it's stressful. I'll be talking to Dr. Erez about that when he gets here.

Now, I'm going to nap.  

Plotting Escape

Have you ever tried to take a nap, in the midst of a 4 year old's birthday party? Or maybe tried to recover from the flu while on a roller coaster? 

Oh, shame. Then you really can't relate to the 4th floor. It is trying to keep a baby calm post op, with 7 other babies or kids. And their parents. And their uncle's sister's dog's monkey's grandfather.

Okay, so the absolute only advantage to the 4th floor, is that you are allowed to go for walks and leave the ward. So, thank G-d, for that, I have been sneaking away and using the PICU facilities. I also go for walks with Tehilla in the stroller, to different little quiet areas of the building to get her calm. Seriously, our nurse just shouted over a party of 12, visiting a little boy, "Why can't you get her to relax?"

Last step until home...last step until home...last step until home. 

4th Floor

In Tehilla's last ditch effort to stay in PICU, she got a rash on her head, back and stomach. Either it's an allergic reaction or viral.

The only "new" thing she has eaten was Gerber baby food. I make her baby food fresh at home. There are preservatives in it, so it could be to that. 

But her stalling didn't work and we have been transferred. This ward is just as difficult as I remember it. It truly encompasses the name "step down". 

It's a giant room with 8 beds separated by curtains. As soon as we got here, we were placed in the space directly ahead. I noticed that the corner spot that is around the corner, near the window and has two walls, was unoccupied. I immediately asked to be moved there. As ridiculous as it seems, it provides a lot more privacy and even a slight removal from all the noise. I may have become an advocacy-addict. I acknowledge my problem. 

So we're here, and trying to be positive, we are making excellent progress to the end result: home. 

Moving Down

Tehilla had a great night! I mean absolutely great, why doesn't she do this at home, kind of great night. She slept from 12:30- 6:30am without waking up. Yes, I had to chase out a cleaner from taking out the garbage at 4:00am. But Tehilla got sleep and that's what counts. 

Tehilla hasn't been peeing a lot and she went down in weight. My milk has gone severely down. It's possible it's from that. Of course, now that Tehilla has nursed, she is refusing a bottle. I took some natural supplement thing to help my milk. They are debating putting her on Fussid. 

Dr. Erez came to see her. We are definitely moving to the 4th floor today. It's an awful ward, but it is the next step to getting home. They must see her gain weight before we can go home. So, some fat thoughts, pretty please?

Shabbat of Ups, Downs and UPs

I wish I could go into detail and explain all the events of Shabbat. I'll do my best to remember, in my very sleep deprived state. 

We went into Shabbat in the up. The morphine was clearly helping with some pain and allowing her to get some sleep. One thing I have failed to bring up in these posts is her heart rate. Since the removal of the chest tube, Tehilla's heart rate had been high, very high and extremely high. It's called tachycardia. When she would be crying her heart rate would be between 180-206. When she was on the morphine, her heart rate would go between 150-175. Something was clearly stressing her and causing the high heart rates. When she wasn't on morphine, she was crying a lot and whining and gagging and throwing up. 

The problem we were having was that the doctors were scrounging to get her calm and unagetated, as well as the nurses, but no one was following the instructions of Dr. Erez. Everything kept failing but no one knew what the cause was because every few hours they did something else.

Our night nurse was awful. Sweet, and maybe well meaning but very upsetting. I slept in Tehilla's room on an arm chair. I woke up at 2:00am, to see the nurse lifting Tehilla under her arms. That's a huge post heart surgery no-no. By lifting under the arms, it pulls on the newly stitched skin and puts pressure on the chest. Only many weeks after heart surgery can you lift under the arms or put  her to play on her tummy. I jumped out of the chair and told her that she can't do that. Then I found out that she had fed Tehilla an hour ahead of schedule and had given her more than she was supposed to get because she felt she was hungry. I told her off and told her she had to follow the instructions of the surgeon. 

They had taken her off of morphine and she was irritable but didn't seem in pain and her heart rates were still high but not extreme.

The morning brought us a wonderful nurse. When the doctors came for their rounds, I told them I had a lot to say. They have gotten used to me participating in their discussions and briefings, correcting them and offering my opinion. One of the head doctors even said that I was a welcome member of the medical team. 

But this morning I had nothing kind to say. I told them I was very upset because there was no plan and everyone was doing something else. I told them about the nurse. I told then I want one plan- Dr. Erez's plan and everyone to follow through. I said that I didn't feel safe leaving the room, that if I did, someone might do something they shouldn't. The doctors all nodded their head in agreement, one even apologized. They agreed to follow the plan and call Dr. Erez on any conflict. 

I also asked that they check her ears, just in case. 

I'm sure I have a reputation for being THAT mother, but I couldn't care less. (So funny how much I've changed since my advocacy post!)

After that it was smoother sailing. The nurse was fantastic. Tehilla was agitated and the medical team (including me!) felt it was because she was very hungry. We felt she should be allowed to nurse and fed baby food. So, a call was placed to Dr. Erez and he agreed as long as we maintained the 4 hours between meals. It has a lot to do with eating redirecting blood from the heart. 

So, I nursed her. She was so calm, it was unbelievable. And like magic, all her vital signs began to stabilize more. The next meal I gave her baby food. After that, she started to do so great, that there were whispers of moving us to the step down unit. 

It's now been several hours and they just came to confirm that tomorrow morning, we are moving to floor 4, post-op ward. 

Which brings us closer to home. Tehilla is doing great and she's even...

Smiling!

 

Good News, Coming Up!

Tehilla took a nice nap and woke up calm, and in a better mood. Then she started gnawing on her IV dressing and looking hungrily at every syringe.

So, the PICU Doctor  said to give her a bit to eat. I gave her 40ccs, which she drank in a minute and a half, with the doctor looking on. She kept it down, so they gave her aspirin. She has kept it down and been in a friendly mood. 

One of the surgeons came in to report to Dr. Erez. He was happy that she seemed better, but was upset that he hadn't been consulted and threatened to scream at everyone if she throws up or is nauseous.  :-)

But she is very calm and so far keeping it down. If she keeps it down, then I will give her another 40cc in a half an hour. 

Calm and Ready for Sleep

We gave her a bath, and just as we finished, the morphine kicked in. She is now very calm and dazed. She'll hopefully fall asleep soon. 

She hasn't gagged from the sugar water. Chances are that after she naps they may allow her to try food again. 

Very Hard Night

We had a very hard night. Tehilla did not sleep at all. She was crying and clearly uncomfortable. She has tried throwing up a number of times, but her stomach is empty. Her stomach X-ray was clear. She has had a fever of 38.0. 

The doctors are trying to decide what to do to help her. Whether to try food again, even though she is nauseated. To restart her on morphine? They are all consulting now.

At 6:00am, I put her in my arms and finally got her asleep. I then yelled at two nurses for making noise in the storage room and I'm assuming I gave the look of death, because they apologized a few times. I kicked out a doctor for his keys jingling. I then made it clear that whoever wakes her up, will sorely regret it. Turned down the lights, and we napped for 2 hours. 

They just came in to say they are restarting her on some morphine and want to try to give her a pacifier with sugar water to see how she reacts. 

G'night

Tehilla has been napping on and off. A lot of her swelling has gone down and over all she looks better than before. 

She was cranky and upset before, so I held her for awhile. I saw some of her personality come back. But she still has yet to smile. 

With the changing of the shift, our new nurse discovered that one of her IVs had moved and now her right leg is very swollen. They had to reinsert her line, somewhere else. Poor Tehilla got very upset and sent her heart rate up to 196. 

I requested that they bring an armchair into her room so I can get up with her and comfort her. 

She's sleeping nicely now and seems content. It's been a rough day for little Tehilla. 

G'night. 

Feverish and unhappy

Tehilla has a small fever and is really unhappy. She goes between cry whining and pulling out her IV and oxygen, to being very quiet and dazed. 

I'm keeping her calm with her mobile, soothing music and some Fisher-Price apps on my phone. 

I want to say thank you so much for all the amazing messages and comments! They are so sweet and wonderful. When I am able to, I will try to reply to them. For now: love to all of you. 

Stepping back

Dr. Erez was just in. I told him about  Tehilla. So far, her lab work has come back good. But she is clearly not feeling well. He wants us to step back a bit. Let her rest more. Not feed her anything. They are going to start her on IV fluids. Make her comfortable. Her stomach is a bit hard and swollen. 

He said it could be her body adjusting to the new pressures from her BT shunt. There's no way to know. 

We'll see how she is in a few hours. 

Not Feeling Well

Tehilla isn't feeling well. She's not eating well, and seems very unhappy. She has also thrown up twice.

She is now wearing a hospital gown that we got with our original Sisters by Heart package. 

After throwing up last time, we changed her, put her on her side, got her more morphine and she fell asleep. She's looking calmer and her color is better. 

Step Down

They removed her chest tubes and she had had a very hard time. Her heart rate repeatedly went above 200.

Now, she has her chest tube out, her central line out and a few other monitoring devices. She had a sponge bath and is calm and wearing her beautiful hospital gown. Thank you Rebekah! 

Beginning Step Down

Dr. Erez just came in. He wants her to begin the step down process. Very soon, they will be removing her chest tube and shortly after, they will remove her central line. He said she seems to be recovering well. Later in the day, they may reevaluate and move us out of PICU to the 4th floor Post-Surgery ward.

He said there are risks in the step down, but it is for the better that we begin. 

So again, please keep her in your prayers. 

Stubborn and Great!

Our little heart warrior princess is doing well. She is gulping down bottles of my milk and formula, and won't take no for an answer. 

She has eaten between 150-170cc in her two feedings. The other nurses have proud smiles on their faces as they watch our nurse get pushed around by a 6 month old baby. 

I've had to do some advocating of my own with this nurse, and have been consistently right (not to brag or anything) about her needs. I will be happy when the shift changes in 10 minutes. 

So Tehilla and I are a couple of stubborn cows, but look at how well and peaceful she is!

Eating

She woke up and was crying. She has opened her eyes. She was clearly hungry, so after trying sugar water, she was ready for her formula for preemies. 

They told us to take it slow, but she was not having it. She polished off the bottle of 90 cc. I told our nurse that she was still hungry, but he wanted to hold off. Tehilla started crying a lot, so now she's polishing off her second bottle. 

Holding Her Own

She is doing well but has a little fever now. She's being monitored well. They need her to stay relaxed so I brought her mobile in. 

Extubated Again

They extubated her again, after she repeatedly tried to do it herself. She is fighting and smacking doctors. She is unhappy, which is exactly how she should be. 

She's being watched carefully. 

Morning

I came in to see this beautiful face. 

The nurse said she had a good night. She heard me talking and actually woke up and started trying to push her tubes out of her mouth and started messing with her IV. 

They had to give her a little more sedation until they are ready to extubate. 

The nurse rearranged her dolls.

Stable and Sedated

She is back to being stable. Both our cardiologist, Dr. Golander and our surgeon, Dr. Erez, came to check on her. 

She just wasn't ready and was too sedated. They will try again tomorrow. 

Re-intubated

Tehilla started crashing and is too unstable. They are re-intubating her. In the morning they will try again. 

Tehillim 57, 58, 75

Extubated

They just extubated her and their trying to get her to breath well on her own. They are trying to wake her up and don't feel she is vigorous. They are taking her down off certain medications to get her to fight. 

Please pray. 

I redecorated

They will be waking her up soon. With their permission, I redecorated the room a bit. Once they extubate her, I will put up her mobile. 

The Plan

We spoke with Dr. Erez, Dr. Golander and Professor Rein. Dr. Erez was unsure what to do, but ultimately felt that doing the BT shunt would be the best course of action. If he had done the Glenn, the growth of her pulmonary arteries would have remained on the same trajectory and she would have always remained with very small borderline pulmonary arteries. She would have struggled to maintain the pressures in her heart and in her head. 

By doing the BT shunt, it helps expand the pulmonary arteries, as well as her regular growth. We will wait until her pulmonary arteries are growing and at a good size, and then do the Glenn. There is no way to know exactly when the Glenn will be. It is all dependent on her growth. It will possibly be in a few months.  

Professor Rein added that at a cardiology conference a few weeks ago, they had showed that this was a better plan of action with better results. 

The BT shunt should keep her in a better place for the rest of interstage. 

The next 24 hours are critical. The BT shunt surgery holds more risk than the Glenn. 

They are hoping to extubate her tonight. She is doing very well for post heart surgery and they are pleased with all of her stats and tests thus far. They will wake her up in a few hours. 

There will be graphic pictures ahead, so please be aware. 

The PICU

Dr. Golander

Our AMAZING nurse, Ifat

Tehilla's room

Surgery Over

The surgery is over. They did the BT shunt. Soon they will bring her to the PICU and we will be briefed. 

Unsure waiting for info

We are unsure about what happened but they started the Glenn and our nurse heard that they had to switch her to the BT shunt. 

They took her off bypass and they are closing up now. It will be around an hour and then Dr. Erez and Dr. Golander will come and explain everything. 

Fourth Call

We just got our fourth call from the operating room. The surgery is progressing and Tehilla is stable.

Glenn!

We are sitting with our incredible, amazing nurse Ifat and she called down to the Operating Room and asked. They did the Glenn. 

 

Third Call

We just got the third call from the operating room. The surgery is still in progress and Tehilla is stable. 

Blood Donations

We had an incredible response to our request yesterday asking for blood. If you donated blood in Tehilla's name, PLEASE SAVE THE CONFIRMATION SLIP THEY GAVE/GIVE YOU! 

Somehow we will need to get the original to give the blood bank. We just checked with them.

Second Call

We just got the second call from the operating room. They are continuing with the surgery and everything is stable. 

Update

Dr. Golander, our cardiologist came out of the surgery and updated us. They are dealing with a lot of technical stuff now. They did an echo and see the pulmonary arteries are very small. They still think it might be a Glenn. 

First Call

We just got the first call from the operating room. They are finished the anesthesia and are beginning surgery. 

Our cardiologist went in to check on the surgery. 

Surgery Started

Ron just took her in. Surgery has started now. We will get frequent phone calls updating us and I will update the blog.

We won't be answering our phones. 

Please keep her in your prayers. Tehillim (Psalms) 57, 58, 75.

Surgery is expected to be about 6-7 hours.

Pre-op

We got to the hospital right on time and are doing all the pre-surgery stuff. They told us she shouldn't wear the beautiful hospital gown Rebekah made, as it will get thrown in the laundry. She'll wear it post-op. 

Surgery will begin at 7:00-7:15am.

Plan B and Happy Sleeping

We did all the preliminary tests and met with Dr. Golander and Dr. Erez.

Due to Tehilla's small pulmonary arteries there is a 20% chance that the resistance will be too high and the Glenn will not be successful. 

Therefore, we are proceeding with the Glenn tomorrow, but if after Dr. Erez opens Tehilla's chest and feels that it won't work, he has a different plan in mind. He will place a BT shunt instead, for about 3 months and then it will come out and he will do the Glenn. It means a 4th surgery, but a good backup plan.

As well, he warned us about Tehilla being uncharacteristically irritable after the Glenn, something we already knew about. It lasts about a week from the pressures of her blood flow in her head changing. 

Other than that, because we live closeby, they suggested we sleep at home tonight. We have to be at the hospital at 6:30am. We'll leave home at 6:00am. 

Please keep her in your prayers. 

Special Request

So...remember that time when you called, texted, commented on the blog and asked how you can help?

Well, here's your lucky day! We just signed in at the hospital and had to go to the blood bank to ensure they had blood for her. 

As it turns out she had 6 bags of blood used in her last surgery. They are predicting that she will need another two. So, we are required to give back that blood by donation. We need 8 people to donate blood in Israel. I can do it in a few weeks. 

So, if you are in Israel and able to give blood, please message me, and I will give you Tehilla's teudat zehut (identity number) and you can bank on her behalf. 

We have time to do it, so let me know. Also, it can be any blood type. And even if we exceed the 8, blood is always needed. 

All Ready

I spent the day today getting ready. I completed all my work. I got everything ready for Ron to take care of the kids with the help of our families. I prepared any last minute things. And I packed. 

Now, just to get a good nights sleep...Right! Not if this little one can help it.

We are expected to sign in by 9:00am. 

Postponement Cancelled

So......

They just called again to say that Tehilla's surgery is back on for Tuesday, March 25 and we go in Monday, March 24.

In the right time. בשעה טובה

Super Cape for Super Tehilla!

I received this email a few days ago, and I have to share it.

There is an organization called Tiny Super Heroes.  They create capes for kids with illnesses or disabilities.  You can nominate a child and people sponsor the cape and they have it sent to you.  Their new mission is empowering the siblings of these kids, "Super Sidekicks".

I signed Tehilla up, knowing that they have a long waiting list, and requested a cape for her for when she is 3, so that she can have it in time for her Fontan. I didn't think it would be done before her Glenn and she won't appreciate it now.  But apparently, we were sponsored very quickly and her cape is on the way.  I will put it away for the right time.

This is an incredible organization that really brings happiness to many of these kids.  My fellow Heart Mamas are always posting pictures of their kids going into surgery, wearing their capes with a proud smile.

Please feel free to check them out: www.tinysuperheroes.com and if you can, sponsor a Super Hero, or their Super Sidekicks.

Cards in Brazilian Portuguese

I received a request to make the cards in Brazilian Portuguese.  Here they are.

You can find the files in the Google Drive.  Here is the link: Google Drive link for cards


Thank you Tsila!

Surgery Postponed

We just for a call from Dr. Erez's secretary. Tehilla's surgery. Tehilla's surgery is being pushed two days. They have an emergency with a baby. 

We now go into the hospital on Wednesday, March 26th and the surgery is on Thursday, March 27th. 

Cards

A week today, Tehilla is going for her Glenn surgery. I would be lying if I said that we aren't scared. Our 5.5 month old baby girl is having her heart reconstructed. There really isn't a single thought or action that I have, that isn't overwhelmed by this. As terrifying as that is, I know that this is in G-d's hands. I believe that Tehilla's purpose in life is to bring people closer to Him.

This blog has generated over 90,000 views. People have written to us from across the globe, informing us of the prayers said for Tehilla.  I believe with my whole heart, that those prayers have helped Tehilla. I think that you all helped jolt G-d's gates.

So, if it isn't too much to ask, I'm going to beg you to do it again. Please spread the word and get her name out. We have the right messengers for the job; our doctors are top rate.  But we need G-d's hand in her recovery.

I have made these cards up:

Please feel free to save it and share it on Facebook or anywhere else. I am also attaching a link to a drive where you can find documents of these cards.  It would mean the world to us, if people would print the cards, and put them up in your shuls, mikvahs, seminaries, yeshivas, and wherever else you can think of.  I am attaching it in Hebrew, as well.

Link to download cards



I know we have people reading from Italy, Spain, Belgium and many more places.  I would be happy to make cards up in whatever language.  Please comment below and send me the translation.

Purim

Here are pictures from Purim. Mechal was a peacock (I made her costume), Tzviel was Superman and Tehilla was a ballerina. 

Surgery is next week, so we will be preparing for that. 

 

Ear infection

And all through the house you could not hear a peep,

Because Tehilla's screams were so loud, that no one could sleep...

Seriously, this is what happens from extreme sleep deprivation. So, first thing this morning, we were at the doctor. She has an ear infection. She's going on antibiotics. Just what we need a week and a half before her surgery. 

Praying for a restful Shabbat.

Spitter's Update

There has been an extreme lack of sleep in our household. Tehilla had a very bad eye infection over Shabbat. She also started breaking out of her swaddle blanket and scratching her head. One of the worst 5:00am wake up calls, I'll ever have was waking up to her screaming and walking in to find her head covered in blood. I'm pretty sure Ron's hearing will forever be affected by my scream. She was put on antibiotic eye drops and since the doctor did not see any cause for her scratching, we are moisturizing her head, and putting socks on her hands when she sleeps. 

The past three days she has not let me put her down and she has a fever today. I've put a call in to our doctor and am waiting to hear from him. Hopefully this is teething. She is supposed to get her last RSV shot tomorrow. 

Also, she has learnt a new trick. Spitting food. Her target practice is starting to become surprisingly good. 

Purim preparations

In a week and a half, it will be Purim (http://en.m.wikipedia.org/wiki/Purim). Ron and I are struggling with getting in the mood. 

In our home, every aspect of Purim is taken with extreme fun. Costumes are taken very seriously and are planned months in advance. Ron and I usually dress up together and the kids pick whatever they are into that year. My personal favorite was our caveman and cavewoman costumes. Ron got a lot of interesting looks, that year. 

I usually spend a day baking hundreds of Oznei Haman (stuffed triangular cookies) with Mechal and putting them inside the Mishloach Manot (seriously, just read the wiki page ;-) ). 

We usually host a huge potluck seudah (meal) and squeeze in between 20-30 friends and family. We decide on a theme of food, and everyone brings something, plus a drink and alcoholic beverage of their choice. The kids have a blast playing with the toys and us grown-ups spend hours sharing interesting divrei Torah (speeches pertaining to the Bible), and playing fun games. Usually at some point in the meal, due to some "extreme tipsy-ness", someone will break out in Spanish lullabies, or monologue as Pharoah about sand. 

It's always been a huge deal and we have probably some of our best memories from this holiday. This year, because of interstage, we won't be hosting any meal. Or be spending any time with friends. It will be a week before the surgery.

At this point, I would say that we are mostly excited for the surgery, as it means that we are moving on to the next stage, that Tehilla has survived interstage, which is usually unfortunately when so many HLHS babies don't make it, and it means she will G-d willing be in a better, healthier place. Every now and then, we will have a oh-my-Gd-my-baby-is-having-heart-surgery moment, and hold her tight. 

So, Ron and I have not picked costumes for ourselves and are feeling extremely unfestive. We will find a way to put on a good show for Mechal and Tzviel. 

G-d willing, everything will go well and next year's Purim will be better than ever. 

Glenn Talk

Today, Tehilla had her echo and appointment with our cardiologist, Dr. Golander. Thank G-d, everything looked very good. We then discussed the Glenn surgery which is in three weeks. 

Because of Tehilla's small pulmonary arteries, there is a higher chance of her lungs collapsing. Therefore, Tehilla will be hospitalized for 2-3 weeks. Of that time, little of it will be spent in the PICU, and the majority of time will be on the Post-Surgery floor. This is the ward that I had a very hard time in, last time. 

We were surprised by this. Most HLHS kids are hospitalized for less than a week for the Glenn. It means that if I am there for three weeks, I will be let out right before Pesach (Passover). If there are any further setbacks, I could be in the hospital for Pesach. Our kids have vacation from the week and a half before Pesach. So, we are now scrambling to figure out a plan for this time period for Mechal and Tzviel. Thank G-d, all of our family is stepping up to help us work this out. 

Aside for that, we gave the framed pictures to our cardiologist, surgeon and the PICU staff. They were all thrilled and loved the picture. 

Paying it Forward- Thank You Rebekah!

I have been waiting since 3:30am to write this post.  Tehilla has been feverish and cranky from the immunizations, so I was up nursing her and giving her Tylenol, when I got a wonderful message.  A fellow Heart Mama, Rebekah, had been nominated as part of the "Pay it Forward" program that has been circulating throughout the world.  If you are not familiar with it, it is people doing random acts of kindness for others, many of them strangers, throughout the world, and leaving a note, asking the person to continue on the trend. While, obviously, we should always be looking for ways to help each other out, this has brought about such wonderful acts. And now, we are the beneficiaries of one of these thoughtful acts.

Rebekah is a Heart Mama to a sweet 4 year old, named Landon. Landon has Pulmonary Stenosis and Ebstein's Anomally. Incidently, he is going for his surgery the same day as Tehilla.  Please everyone have him in your thoughts and prayers.

Rebekah creates one of a kind hospital gowns for babies and children and sells them. As her Pay it Forward act, she has gifted over 30 of these gowns to heart warriors awaiting surgery. Tehilla is one of them.  She finished her gown yesterday and sent me a picture of it before she mailed it. It's Tehilla's size and she will be able to wear it in time for her Glenn surgery.

If any of you, know a baby or child that will be having surgery, this is a really wonderful gift to give. Please visit Rebekah's page and contact her to place an order.

For Landon's Heart

Now, we will have to think of a meaningful way to Pay it Forward.

Immunizations

On Shabbat, Tehilla turned 5 months old and she turned from back to stomach completely. She is eating the apples nicely and I will start to mix the fruits with the vegetables.

I took her for more immunizations today.  She got the DTaP + IPV + HIB, the Pneumococcal vaccine and the Rota drops.  The nurse was extremely happy with Tehilla's development and said that she is advanced and bright. 

Tomorrow, she will go for her blood test to check her iron level and see if there is a need for iron supplements.