Abba's Girl

This week, Tehilla has been teething and going through a growth spurt. She cannot figure out how to get more food into her mouth fast enough. She has also taken a few chomps out of me.

She is going through an "Abba's girl" stage. She only wants him and shrieks or cries if he walks out of the room. She has delayed him a few times for work because she needed another snuggle with him.

But other than that, everyone is doing well, healthy and fine.

Shabbat Shalom to everyone!

Amazing Weekend

After a difficult summer, thanks to the war and a very disappointing and jolting catheter, our family really needed a wonderful vacation day. We decided to go to the beach on Friday. Our family has always enjoyed the beach, and really found the sand and waves soothing.

That day for all of us, was probably the most peaceful that we have had, since finding out that something was wrong in my pregnancy. The kids played, Ron and I swam and relaxed and Tehilla was absolutely terrified of the water. We sat with her at the shore line and every time a little water came her way, she turned and crawled up into our arms. By the end, we got her to at least stand and enjoy the water a bit.

About an hour after getting to the beach, it was Tehilla's nap time. I sat under a shaded pergola, with her wrapped in a towel, up against my chest. For quite a few moments, I was able to forget about heart defects and surgeries. I was carefree and snuggling close to my baby daughter.

We spent a wonderful Shabbat with family in Beit Shemesh, (with the knowledge that we could get to the hospital within 25 minutes, should there be a problem). After Shabbat, we had a really meaningful experience of meeting a fellow HLHS family. Here is Saadia, 13 years old, holding and playing with Tehilla. Two strong and amazing heart warriors!

His family has showered us with love and support, since connecting with them, by the end of my pregnancy. Just hugging his mother was touching.

More Teething

Tehilla has spent the past few days pretty irritable and unhappy and scratching her ears and head. When we went to see our doctor, Tehilla gave him the biggest smiles, and totally made me look bad. But thank G-d, it's only teething again. Apparently, two teeth are just not enough...

Other than that, everything is doing well.

Reassurances

Today, we had an appointment with our wonderful family doctor.  The purpose of the appointment was to discuss the catheter.

For those that have been reading this blog since the beginning,  you will possibly remember we had a bad experience early on with a pediatrician and made the decision to switch Tehilla to our beloved family doctor. We had been nervous if it had been the right decision.  We have seen time and time again how right that decision was and have been so happy that we listened to our instincts.

He is such an incredible doctor and really an amazing person to have on our team. Tehilla gives him huge smiles and he writes in his notes for her appointments things like, "She has gotten even cuter. How is that even possible."

I explained the events and findings of the catheter and read through all the medical papers with our doctor.

As it turns out, Tehilla did not just have an AV Block at the beginning of her catheter. She went into full cardiac arrest. She was given chest compressions and 3 doses of adrenaline to resuscitate her.

It makes my heart ache to realize what had gone on in that catheter lab. I am so grateful that she is okay. Thank G-d. Thank G-d over and over again.

Our doctor also gave me great reassurance that Tehilla is being thoroughly monitored. That if at any point she started to not do well, there would be early warning signs that would be noticed. If she were to take a bad turn, it would be picked up before it got severe enough to require drastic measures like a transplant. 

It did ease my worries. Please continue to keep Tehilla bat Shoshana in your prayers.

Enjoying the Smiles

In the CHD world, there are a lot of worries and bad days. As one of my heart mama friends reminded me yesterday, "Don't let the ambiguous dates rob you of today's joys." Thank you, Tanya, for helping me find the inspiration to be grateful for each and every day with my children. 

Your Help

Assuming that you have been reading this blog and you have read the last blog post, the pressing question that Ron and I have been dealing with is:

Now, what?

Where do we go from here? What do we do, when we find ourselves in a situation that is pretty severe, which has the potential to become extremely severe? What can we do to help this situation?

There is nothing we can do, to help this situation. Nothing anyone can do.

Except pray.

This situation is completely out of our control. We believe in G-d. We believe that everything that happens is because He makes it so. We believe in the power of prayer. And we believe that it is the only thing that we can do for our daughter.

So, please, HELP US. Help spread Tehilla's name. It was done before and we truly believe that it made a difference.

Please spread Tehilla's name to your community, your synagogue, school and friends. I have prepared cards that can be printed or used on the internet.

You can click on the below link and download files in English and in Hebrew. Either in a full sheet of cards, or a single card that can be taken to a printer. There are also these images that are web-friendly.

Google Drive to download files

If you would like me to prepare them in another language, please email: tehillasheart@gmail.com and send me the translation.

Explaination and Plan

Yesterday, was a very shocking and upsetting day. We and our team of doctors, went into the catheter fully expecting to be moving on to the Glenn surgery. The cardiologists had even set aside next Wednesday to do it. We were beyond happy to finally be out of interstage and progressing towards getting Tehilla to a better place. So, you can imagine, why we feel like the air has been knocked out of us.

This is the exact reason why heart catheters are done, even though it is a procedure that holds many risks and requires general anesthesia. There are those infrequent times, where you just can not get an accurate full picture from an echo.

As, I explained in the previous blog posting, Tehilla suffered a serious complication immediately at the beginning of the catheter. She had an AV Block. While obviously, our doctors are trained to expect any number of complications, and to be able to properly handle it there is quite a large team of doctors that are present for the catheter- this still took everyone by surprise. Thank G-d, Tehilla came out of the AV Block okay. This is something completely separate to her HLHS and does not effect her on a daily basis. It is however, something that will always have to be taken into consideration and they will be prepared for, when doing any future procedures.

After Tehilla recovered, they went back in and did the catheter. The catheter showed two major problems for moving forward with the Glenn. The first is that the blood pressures inside of her heart are very high. The second is that her pulmonary arteries are extremely small. At the moment, on the outer side of the pulmonary arteries, that feed into her lungs, they measure 5.5 mm and the center area of the pulmonary arteries are 3.5 mm. This is much too small. If they were to do the Glenn, with her pulmonary arteries like this, her blood flow would bottle neck, and she would get insufficient blood flow to be able to breath and would actually end up with an enlarged, very blue head.

The first problem with the blood pressures being too high, should be able to be resolved through medication. They have raised her dose of Enalapril to the highest possible. When we go back for a check-up, they will see if it has helped enough. If not, there are other medications they will give her.

The second problem with her pulmonary arteries can not be resolved. They have to grow on their own. There is no explanation for why they have not been growing. There is also nothing that can be done to force them to grow. They have to do it on their own.

So, the plan is to wait. I am paraphrasing our conversation with our cardiologist when I explain this next part:

We wait. We wait until they grow.

How long can we wait? As long as she is doing well, we continue to wait. There is no reason to believe that she will not continue to do well, and so we wait, however long it takes. People have been in interstage for years. As long as she is doing well, we will wait.

You said, "as long as she is doing well", What does that mean? That her saturations remain in her range of normal (74-78) and she continues to develop and do well.

What happens if she starts to not do well? Then we have to get creative. We will have to take drastic measures.

Do you mean a heart transplant? Yes. A heart and lung transplant.

...but we are very very far from there. She is doing well. She has been doing well. There is no reason to believe that she will not continue to do well. So, we have no choice but to wait.

------

Shortly after that, Ron bumped into our surgeon, Dr. Erez. He said he had looked over the images and feels that in 3 months time, she will have grown just the little bit more that we need and he will put grafts on the areas that are not big enough. He felt very positive that we only need to wait 3 more months.

-----

Dr. Golander, our cardiologist, came to talk with us again, and felt that our surgeon was being impatient and that we had to wait and not make any assumptions that it would be 3 months.

-----

This morning, I met with Dr. Golander again. The measurements from the catheter had been fully analyzed. Certain aspects, showed that she is perfectly ready for the Glenn, such as her resistance pressures inside her lungs. But again, there were the two problems, I mentioned. Dr. Golander feels that we need to keep waiting, but there is the possibility that in a few months time, there should be the growth in her pulmonary arteries that we need, and like Dr. Erez had said, grafts would be used to enlarge her pulmonary arteries.

There is discussion whether to do another catheter, when we believe that Tehilla's pulmonary arteries have grown. Given the complication that she had, they may choose not to do the catheter.

All of the cardiologists at Hadassah Ein Kerem meet once a week and discuss all relevant cases. They will be discussing what the plan should be for Tehilla and come to a unanimous decision.

In the mean time, we will be going for cardiology check-ups once a month.

Good Morning and Home

I woke up to a very smiley face at 5 am.  She ate nicely, napped a bit and we just had an echo to check on everything after her catheter.

There is a lot to update and write about. Right now we are receiving our discharge papers. When we get home, I will write everything out and explain the situation in full.

Gnight

Tehilla's oxygen saturation went back to her normal range. The pediatrician came to look at her and spoke to a cardiologist.  They felt that it wasn't anything to worry about.

Tehilla had her pressure bandages removed and is sleeping nicely for the night. I'm heading to sleep too. It has been both an emotionally and physically difficult day.

More updates and explainations tomorrow.

Recuperating

Tehilla has been slowly recovering from the catheter. She threw up once, so we took baby steps restarting her on liquids, nursing and solids.

She has started sweating a lot and she had some very low oxygen saturation.  They have paged our cardiologist, Dr. Golander and have a doctor coming to see her now.

AV Block and Not Glennable

There was a serious incident at the beginning of the catheter. She had an AV Block. Here is a link to read up on it: http://en.m.wikipedia.org/wiki/Atrioventricular_block

In short, it is when the natural pacemaker in the heart stops working and the rhythm between the atria and ventricles can not work.

It happened right at the beginning and was probably caused by the catheter touching her heart. It shows that she has a big sensitivity.

They pulled out right away and it took 10 minutes for the AV node to start working again properly.

It is something that quite possibly will happen every time there is a catheter.

They went back in and saw that the pressures in her heart are very high and the pulmonary arteries are too small. She is not Glennable. At this point it is starting to be a concern that they are not growing.

They have to go and look over all the measurements to get a clear picture.

We will have to wait several months more to see if her pulmonary arteries grow. And keep waiting. They will be raising her dose of Enalapril to the maximum amount to lower the blood pressures.

Anesthesia

She was taken in and I stayed with her until the anesthesia kicked in.

I will update when I have something to report.

Waiting

There has been a delay. We are still waiting. Tehilla is miserable.  She is hungry,  cranky and tired. Sesame Street helped only so much. We took her for a walk in her stroller and she fell asleep.

Being here at the hospital, and seeing all these heart kids, hearing about a newborn HLHS baby that had the Norwood yesterday is very hard. I identify with each family, no matter nationality or defect, because each kid is fighting the battle of congenital heart defects. Each kid is trying to beat the odds and each kid that triumphs brings hope.

It also reminds me of why we started Little Lev and how important it is that we ramp it up and get Little Lev moving and helping.

On the way

Waiting in the catheter lab for Tehilla's turn.

IV Troubles

Tehilla's IV fell out of place and had her screaming hysterically.

It took some advocating until I personally had to go find a doctor, who ran to reinsert her IV, so as not to delay the catheter.

Tehilla is curled up in my arms, sleeping right now and I've given the nurse instructions that she is not to be disturbed.

Tehilla bat Shoshana. Please pray that the catheter be safe, without complication, and show that her pulmonary arteries have grown and she is able to have her Glenn.

Psalms 57, 58, 75

Bright and Early

We left before the sun was up and got here early.  Tehilla has started her IV fluids and now we have to keep her from pulling it out.

I woke her at 4:45 am to eat, so I'm hoping she will take a nap soon and make the next 4 hours easy.

Tests Completed

Tehilla has had an EKG, chest x-ray, blood tests, pediatric visit, and cardiologist visit. She has an IV in her arm and has it heavily bandaged to keep her from pulling it off. We are going to be released to sleep at home tonight.

Tehilla has to fast from 5 am, and start IV fluids from 8 am. Her catheter is scheduled for 11 am.  She is second in line. We have to be at the hospital tomorrow for 7 am. 

Tehilla has fought ferociously with everything today. That's my heart warrior!

Feisty and Fierce

Tehilla has had her vitals checked and medical history taken. She has charmed the nurses and somehow charmed a piece of cake out of an administrator.

They tried to do an EKG on her. But she threw a temper tantrum like I've never seen. She wripped all the wires and even stickers off of her body and had 3 people holding her down. It wasn't successful.  So they decided to let her calm down and try again. As they walked away she shrieked at them. This girl has got some serious fiestiness in her.

She wore herself out cold. We're waiting for her to be in a deep sleep, before trying again. 

Checked In

Fastest check in yet. Now we are waiting for our cardiologists and nurses to come and start taking vitals and tests.

Pearly Presentations

After 7 months of tears, screams and crazy amounts of lost sleep- by pretty much everyone involved...

Tehilla is proud to present:

Her teeth!

Getting Ready

On Sunday, we check-in to the hospital for Tehilla's pre-Glenn heart catheter. She will have blood work done and we will have papers to sign. As long as she is feeling well and there is no reason to be concerned, they will allow us to sleep at home, but return to the hospital bright and early.

We are just getting everything ready for the stay-over and preparing Mechal and Tzviel.

Please keep Tehilla in your prayers for this procedure and specifically pray that the catheter reveals that she is ready for her Glenn.