Thursday, October 30, 2014
You can't help but smile, when you have this face looking at you.
While yesterday did not produce the results that we had been waiting and hoping for, it's smiles like these that remind us about the journey we started.This journey has had several downs but also extreme highs. Ron and I can honestly say that this year has been the most incredible year of our lives.
The truth is that we like to fool ourselves into believing that we have some kind of control over the situation. We educate ourselves, stay on top of the situation, advocate (a lot), and try to make a difference in the Israeli heart community. But at the end of the day, we are no more in control over this situation, then any other situation.
We have faith. We believe that G-d is in control. We feel very strong in our beliefs and we know that G-d has provided us with the perfect doctors and surgeons to take care of Tehilla. It's unnerving that we are going into surgery with an added risk. But we are also going into surgery with benefits.
Today, Tehilla is healthy and strong. She is not going into surgery in a critical state. She is doing well- exactly how they would like her to be. And in all other areas, she is shining.
So, that is where I will spend my energy: in smiling with Tehilla and holding strong to my beliefs.
Wednesday, October 29, 2014
Today, we had Tehilla's appointment with our cardiologist, Dr. Golander. She had an echo to check on the size of her pulmonary arteries. There has been no progress. They have not grown.
Tehilla did not have the "normal" Stage 2 surgery, the Glenn at 6 months because her pulmonary arteries were too small. Instead they replaced her Sano shunt from her Norwood surgery, with a BT shunt of 5 cm. This was done, so that she would not outgrow her Sano shunt from her Norwood and crash. They also specifically put one of the biggest shunts to increase the pressure on her pulmonary arteries and force them to grow.
That last part has not happened. We have waited and pushed off the Glenn in the hopes that her pulmonary arteries would grow on their own. It has been 6 months since her BT shunt surgery and we can now respectively say that her pulmonary arteries are not growing. This pushes her to an "irregular" case of HLHS.
Because we have seen that her pulmonary arteries are not growing and have given a reasonable amount of time for it to happen, we can not expect that they will grow. So, there is no sense in waiting any longer. We are going ahead with the Glenn surgery with this added problem. Dr. Erez, our surgeon will open Tehilla's pulmonary arteries and put a patch on them to be the necessary size.
We are doing a heart catheter this Monday, November 3rd. There they will double check that the pressures in her heart are within the right range. As well, they will be checking to see that the branches of the pulmonary arteries, that are inside of the lungs, are the right size. We get admitted to the hospital on Sunday, where they will do blood tests and put in an IV. We then go home to sleep and come back for the catheter on Monday by 7:00am. They will keep her overnight and barring any complications, we should be released on Tuesday.
Dr. Golander drew us two diagrams. The first is just a sketch of the Glenn surgery. The second is the pulmonary arteries and the lungs. You can see the branches of the pulmonary arteries there.
Monday, October 27, 2014
We couldn't get a hold of our cardiac nurse, so we called one of our PICU nurses, who is also a friend. She suggested that we go to the ER for an inhalation treatment. I am always hesitant to go the ER, for fear of exposing Tehilla to something far worse. We took Tehilla's saturation and it was ranging between 68-71. Her baseline is 74-78. For Tehilla, that's still not completely awful, as long as she is breathing regularly and there are no other signs of distress. We waited and took her saturation again. It was 75.
I sat outside with Tehilla for a little longer and then put her to bed. I then stayed up for an hour to make sure that she was okay.
Of course, Tzviel then had a croup episode. He's nearly 5 and refusing to take his daily puffer. So, it was a long night.
We went to the walk-in clinic this morning and had one of the on-call doctors check both of them. Tzviel received a stern talk about how important it was that he take his puffer. He hung his cute little head in shame and nodded obediently.
Tehilla is being put on an inhalation treatment, even though she sounds almost completely fine, as a precaution for 3 days.
On Wednesday, we have our cardiology appointment. We will find out if this will force a major delay in a catheter and surgery.
Friday, October 24, 2014
Tehilla has a cold and had a very hard time sleeping last night from being so congested. We have a humidifier with some natural cold drops set up in her room and are giving her saline nose drops. We are being vigorous in trying to keep this cold from turning into anything more.
This week is Tehilla's cardiology appointment and there is a strong feeling that she might be ready for her Glenn. So now would be a terrible time to get sick...
Here is a sweet picture of Mechal reading to Tehilla.
Have a wonderful Shabbat!
Tuesday, October 21, 2014
Tehilla is now cruising along all the furniture. She is babbling constantly and is definitely trying to get some words out.
Just before she opened her book Brown Bear, Brown Bear What Do You See? , her favorite, and found the page with the cat and said, "Meow!" Then she showed each of us and repeatedly meowed for us.
In other news, I've been asked to consult with the head nurse of the NICU at our hospital about ways they can better accommodate heart babies. I meet with her next week.
Sunday, October 19, 2014
This past vacation was really wonderful for us, as a family. After our pre-Yom Kippur scare, we really made all the effort to make Sukkot and Shmini Atzeret/Simchat Torah very relaxing and fun for all of us and to spend time with our friends. It was very therapeutic.
Monday, October 13, 2014
This place has things like bumper cars, bumper boats, huge 4 story gymboree play areas, arcades, rides, some animals, and many little toddler play areas. I think it was perfect for the range of our kids' ages.
I took Tehilla into several of the toddler areas to play. It was very strange to see the comparison between babies within her age range. One thing that we have been asked, not by our doctors, but from many of the hospital pediatricians that have checked her throughout her various visits, "Does she tire easily? Is it strenuous for her to move around?"
For many heart kids, having the limited circulation in their heart makes it harder for them to do physical activity and they do tire much more easily. We have always answered, "We're not at that stage yet. She is just starting to crawl and cruise."
Each healthy baby follows their own individual rhythm to their development and truthfully it isn't wise to compare children. We have always seen Tehilla as climbing her pattern in a steady path, without cause for concern.
Today, I saw many babies varying in age range, and they were crawling and climbing all over the place. Tehilla crawled a bit, but mainly stayed close. A big part of it was that Tehilla was completely overwhelmed by her surroundings. But it did make me wonder- does she lack energy to be active?
Whether the answer is yes or no, with her Glenn surgery her heart circulation improves and she will gain more energy. Later, after the Fontan, again, her heart circulation will improve along with her energy levels.
But regardless, we had a great fun family day!
Sunday, October 12, 2014
Here she is enjoying her special Sukkot breakfast of chocolate chip pancakes. Didn't you know that you're supposed to wear them?!?
Friday, October 10, 2014
Tehilla is eating. It still takes a lot of effort to convince her to eat, but we are usually successful.
She is still very low energy. She is not really playing that much. She just wants to be held or to rest.
As coincidence would have it, Tehilla cut a whole bunch of new teeth. I can't take a picture if them, unless I hold her upside down and snap the shot. Because that is exactly how we discovered these new teeth. We were playing with her and hung her upside down (for a split second, calm down!) and discovered two upper teeth and molars!
Assuming that they just cut the last week or so, this is without a doubt a contributing factor to her feeling miserable and maybe even refusal to eat. Let's hope it's the reason she just wants to rest, as well.
We had a really nice Sukkot. Mechal seems to have caught the flu. It just isn't fair because flu shots have just become available. We are keeping Tehilla away, but we are nervous.
To a healthy and enjoyable rest of Chag for everyone!
Wednesday, October 8, 2014
We already called the on-call doctor, who thought she should go back to the hospital. We also spoke with our wonderful nurse, Yifat, who wasn't totally sure that we should go back to the hospital.
So, we are going out and buying all of her favorite foods and anything we can think of. I just got her to eat a little bit. For now, we are avoiding the hospital. This might just be the end of the virus playing itself out, and I really can't put her at risk to pick up anything else.
Of course, if things worsen or she shows any other bad signs, we will go back to the hospital.
Please G-d, she's regain her appetite right away. Tehilla bat Shoshana
Tuesday, October 7, 2014
I forgot to add to my post last night, we received approval from the Ministry of Health for Tehilla to get her RSV shots! I'm so relieved that we won't have to fight for them.
Tehilla has another new "trick". She shakes her head "no", with a big mischievous grin on her face. Before we left the hospital, we bumped into Dr. Erez, our surgeon. He loved seeing how much Tehilla has grown. I told Tehilla, "Say hi to Dr. Erez." She shook her head "no" with a huge smile. Dr. Erez cracked up at that one.
Monday, October 6, 2014
We were discharged later on in the day. The doctors came and asked to redo a blood test to make sure her white cell count was back to normal. The moment that we stepped into their "procedure room" Tehilla screamed. She kept crawling up into my arms and crying hysterically. She is very aware and is really developing a fear for doctors and nurses.
They drew a little blood, but ultimately it was unsuccessful. They tried again and then again. Tehilla has bruises all over her hands and feet from all of the blood tests that were taken.
I finally told them, that I appreciate that they are trying to take every precaution, but it's too much. I asked that they not try again.
They spoke to the senior doctor and agreed that she should just redo the blood test in a week.
We finally got home around 3:00pm.
We just went to see our family doctor and update him on what went on the past 5 days. He listened and asked all his questions.
Then he gently asked "How prepared are both of you for the idea that she could die at any point?"
We answered in unison, "Very."
"There isn't a day that goes by that it doesn't cross our minds. When an emergency like this or a catheter or surgery come up, we think about it constantly and are very anxious about it. We know that 'tomorrow' she could die, so we live for 'today' when we have all 3 of our kids and make sure each day is incredible."
I think he is such an incredible doctor to sensitively ask that and in a sense make sure we are prepared.
Thank G-d, Tehilla fought hard and recovered from this virus. As my wonderful heart mama, Rachel, pointed out- Tehilla crashed quickly, but she also bounced back quickly. She showed us that she is strong.
Thank G-d for everything.
We are being discharged soon. In fact, they said, "Get them out quick."
Tehilla is basically back to normal. Her rash is working it's way down her body and fading from the top. Her breathing pattern is still a bit strained but our cardiologist feels it's normal given everything that Tehilla went through and that it will pass.
We are pushing for Tehilla to get clearance to get the series of RSV shots again. Our family doctor and cardiologist agree that she should get them, especially because we are discussing surgery in about another month or so. RSV is extraordinarily dangerous for heart kids, especially so close after surgery. It's not usual for the Ministry of Health to grant the RSV shots to kids over a year. So, all the doctors are putting in the same request to put pressure.
If we do not get the RSV shots covered, then we will pay for them privately. We won't allow Tehilla to be at risk.
Tehilla has played with a medical clown twice, been serenaded by a flute player and played with a drama performer.
The doctor just came to check her. Tehilla's tests came back clean. We need to wait until after rounds to be discharged. They're still not totally thrilled with her breathing patterns. But overall, she is doing well.
We are back at the hospital. Tehilla is completely back to normal and her rash is fading. We need to wait for the doctors to do their rounds before we find out about her test results. Hopefully they will come back clean and we can stay out of the hospital.
For now, we're hanging out and trying to keep our distance from the sickies.
Here's Tehilla completely enraptured by the giant fish aquarium.
Sunday, October 5, 2014
The doctors just came around. The results came back from her first blood test and it showed a bacteria. Everything about what Tehilla has gone through points to a virus. So they believe the test was contaminated in the lab. It happens. They took more tests the next day. They need the results of those tests to prove it's not bacterial. Those results will be ready tomorrow.
Everyone believes that those tests will be clean. The problem is that they can't release us until they know for sure. Because if it is bacterial it could be fatal for Tehilla.
I suggested they send us home for another "chofesh "(vacation). It puts her at great risk to be in a sick kids ward. If there are any bad symptoms, we come right back. And we come back tomorrow for another check up and the test results.
The doctors agreed, trusting my instincts.
Soon we will receive a paper to go home.
Tehilla is doing great. The only thing she suffers from, currently, was a bad overnight nurse. The nurse did not know how to properly place the probe for the pulse ox. The pulse ox was reading 88-91 and sent the doctors into a frenzy. Tehilla's heart can not provide that much oxygen for her system so it was impossible. Not only that, if it were true it would stress her heart out.
I insisted that they replace the probe and magically her saturation went back to 77-79.
The probe clearly moved in middle of the night, which is bound to happen when it is attached to the toe of a 1-year old. So the pulse ox went off all night, saying her saturation was between 60-70. I was too tired to move but kept telling the nurse to fix the pulse ox.
This morning she wanted to start her on oxygen and I told her not to touch her. I got up and replaced the probe myself. Presto! Her saturation went back to 78-79.
I bit my tongue from telling her off. But I did mention it to the doctor and our cardiologist.
Dr. Golander was just here and thrilled to see how great she is doing. He's kicking us out! Home again!!!
The consequence of Tehilla having this kind of virus is that we have to now wait minimally a month before she can have another catheter or surgery.
We have an appointment in a few weeks. They will probably decide to do a catheter again before her Glenn. So now it has been pushed off a week or two.
Saturday, October 4, 2014
Tehilla is really doing well. She has broken out in a rash (which you really can't see in the photo) from head to toe. So, I guess the initial on-call doctor was right and it was a roseolla type of virus.
We are still waiting for a doctor to come check her, but to be fair there is a serious emergency in one of the other rooms.
Here is a picture of Tehilla being extremely naughty and refusing to go to sleep. She is now fast asleep.
The general feeling is that she will get checked tomorrow by our cardiologist, Dr. Golander, and we will be discharged.
I really want to thank all of our friends and family that jumped at the opportunity to help us. Thank you to everyone that sent messages, emails and Facebook comments. We are very blessed to have all of you in our lives.
After having the experience that we had, so close to Yom Kippur, we were very much in the right mindset. At the same time, having that amount of intense stress and lack of sleep, it really threw us off.
As soon as we got home, I fell right to sleep. I did not make it to shul (synagogue) at all, mainly from lack of energy.
I think overall it was a good decision to be home. We had our beds and the comfort of being in our normal surrounding. It wasn't easy though. We were on high alert listening to Tehilla's breathing patterns constantly. She woke up about once an hour to drink. She still felt really sick and it was difficult to convince our other two kids to let us give her our full attention.
There was one point where her color looked bad and we took her saturation. It was at 65. We watched it climb to 71 and rechecked it 5 minutes later. It was still within that range. After feeding her, her color was better. She took a nap and she seemed to bounce back. We decided to wait and see. When she woke up, she looked pretty good, so we decided to wait the next few hours out.
We just pulled up to the hospital now. I will update, as soon as I can.
Friday, October 3, 2014
Tehilla was taken off oxygen. She is holding strong. She was taken off fluids because she is eating and drinking.
They let her walk around and overall she seems like she is doing well.
The feeling is that she is over the worst of it.
So...they are not discharging us, but they are allowing us a "chofesh". A vacation. They asked me how I felt about going home for the weekend. I told them that I agree that she seems to be on the mend. I told them that unlike them I have only one patient and I know when something is wrong. We have a pulse ox at home and I can monitor her.
They asked if I would come back and break Shabbat and Yom Kippur if necessary. Absolutely.
We have to come back after Shabbat and spend the night probably.
This virus that Tehilla has is one that our entire family had. We all had a sore throat, head aches and general lousy feeling for two days. In fact, Mechal has it right now, as well. Yesterday she was with us in the ER because she had come straight from the doctor with us.
She was sitting, playing on our phones, feeling unwell and asking for soup. Her sister, Tehilla, was on oxygen and crashing fast.
This was a perfect illustration of the dangers of interstage. There are viruses that for the relatively healthy person, they feel terrible but it passes after a day or two.
For kids like Tehilla, who has a compromised heart circulation, it could actually kill her. It's the reason we were in isolation for so long and it's the reason we might have to put ourselves back in isolation. Just until she has her Glenn surgery.
This was unavoidable. Tehilla caught it from one of us. There's only so much that we can live in a bubble.
We are lucky that we go to an excellent clinic that were on top of this and told us to keep coming back. We are lucky that they thought to do a blood test with immediate results. We are lucky that we live so close to our fantastic hospital and that everyone sprang into action so fast and knew exactly how to help her.
It would break your heart if you knew how many heart kids catch viruses like this and don't live close enough to a hospital that specializes in pediatric cardiology and unfortunately don't make it.
We are lucky that we have such great friends and family that jumped at the opportunity to help us. And to all of you for praying for her.
With G-d's help, she will improve and we can go home soon.
What an incredible nurse! They started taking her down from oxygen and every time I lifted my head to check on Tehilla, she was here, monitoring her.
She is now completely without oxygen and has a saturation of 75. She is still breathing a bit fast but everything looks great.
The nurse just removed the oxygen line from her face. I told her that she has sensitive skin, so she brought something special to remove it and managed to do it and didn't wake Tehilla at all!
There is a phrase from Tehillim (Psalms)- הודו לה' כי טוב. כי לעולם חסדו. We give thanks to G-d, for He is good. His mercy is forever.
It's 3:35 am. I'm going back to sleep.
Thursday, October 2, 2014
Tehilla is sleeping restlessly. Her saturation have been fluctuating between 78 and 60. Once it dipped to 53. She just doesn't feel well. We gave her Tylenol.
I have to say, we have had the most amazing nurses this time. Really wonderful, thoughtful and on top of everything. The doctors have been great too. I only had to tell one off ;-).
Hoping for a good night sleep for both of us.
Tehilla is improving and it is without a doubt because of all of you who are praying for her.
We are not being transferred to the PICU. She ate a ton before. Her blood tests have shown an improvement. Her saturation is at 75 right now- with the maximum oxygen.
She is starting to fight.
She's had a rough day. She had 7 blood tests done. She keeps waving "bbye" to all the nurses and doctors. They think she is saying hi, but really she is telling them that she wants to go.
She saw a picture of a bear on the wall and said, "Roar roar roar." Then the doctor came to take more blood and she roared at him. She has all the nurses playing with her and cracking up at her personality.
Okay. Tehilla's white blood cell count is still severely low. Her saturation is very low and she is on oxygen. Her chest x-ray was clear. Her blood gases test came back not good.
All in all, they believe she has a virus. They will be starting her on antibiotics just in case.
They believe that she is dehydrated. They think that it is causing her saturation to be low and her blood gases results. She has been started on fluids.
They are admitting her to the hospital for minimally 48 hours, but possibly longer. In two hours they will redo all the tests. If they see that after all the fluids things are improving, then they will know they are correct.
So, we will be here over Yom Kippur. Dr. Golander has instructed me to call him if at any time I think something is wrong.
I had a great experience with the nurse here. Before Tehilla had a face mask for oxygen. She was ripping it off, so I asked if she thought maybe putting a nasal oxygen mask would be better. "What do you think? You're her mother. You know her better." I said that I wasn't sure but maybe we should give it a try and that I really appreciate her saying that.
Tehilla has had fever for 3 days. We wenĺ to the walk in clinic and saw an on call doctor. We did a blood test with immediate results and they found that her white blood cell count was too low. She is also still not eating.
This indicates that she has a virus that suppresses the immune system. There is no way to know how this will effect Tehilla and her heart.
We are being sent to the ER for further tests and observation.
Please keep Tehilla in your prayers. Tehilla bat Shoshana.
Wednesday, October 1, 2014
One of the amazing things that Sisters by Heart does is send care packages. We received a huge package. Inside was a blanket that had been donated by a family that had a son with HLHS, who had unfortunately passed away. It had a pacifier that helped babies learn the sucking reflex. It had bottles, toys for my other two kids, something for my husband and I, and many more things.
That was my speech. Nearly everyone in the room was crying and laughing throughout my speech. A few nurses came and hugged me and thanked me for sharing our story.
I really see how our story impacted these medical professionals. I would gladly do this again, and hope that I get the opportunity in the future.
Our nurse Yifat recorded my speech. When she sends it to me, I will try to upload it.
A year ago today, I lay awake unable to sleep. Tears flowed freely from my eyes and my lips whispered prayers and promises.
A year ago today, I felt fierce kicks from within my stomach, your own way of showing me you are a fighter.
A year ago today, you were born to a family that couldn't have possibly loved you more and wanted only the opportunity to cradle you in our arms.
Today, you are alive and strong.
Today, your smile shines and brightens our life.
Today, you are one and every bit as perfect as we knew you would be.
Happy Birthday, baby girl.