Enjoying Home

Tehilla is enjoying being home. Thank G-d, she is doing well. She still has a bit of a cold and a cough. 

Before we left the hospital, Dr. Golander came to tell us that on Mondays there is a cardiology meeting with the entire department to discuss relevant cases. He said they would discuss Tehilla and see if anyone had other ideas. 

We have an appointment with him in a week and a half. 

...Gone

Dr. Golander popped in and was happy with how she looked, and had heard about the onions. I asked him if he had heard of such a thing and he said, "uh, yeah, for eating." He said, "okay, we're going to kick you out now." They will call us to give us the surgery date.

The doctors did their rounds and were all thrilled, and smiling from ear to ear that Tehilla did so well with the catheter and anesthesia. 

And we're leaving now. Tehilla can't wait to be in her swing and I can't wait to be in my bed. 

Thanks for all the prayers, love and support. <3 to all of you!

Going...Going...

Our Geneticist/cardiologist came to check on her. He was thrilled to see how well she is doing. "She is really beautiful." I told him we've been giving her inhalation and nose drops. The nurse chimed in, "And onions!" So I explained to him about how we got the onion idea, and he stood there, pulling out the science and figuring out how it worked. 

He checked her and said that she should go home and joked that the catheter had helped her. We just need the pediatrician from the ward to agree, as well. 

Next the pediatrician who has been checking her, popped in to see her. She had just fallen asleep in the stroller. He sat down, looked at her and sighed. "She really is so beautiful. She is just amazing." He will come to do a checkup soon.

Next a different nurse came to talk to me. She wanted to know how I felt about going home and what my opinion is. Then she started talking about how beautiful, special and smart she is. 

While typing this the pediatrician came back, examined her and signed off on her going home. Now, we just have to wait on the paperwork. 

Much Better

Last night, was another sleepless night, but hospitals aren't really meant for sleeping, right? Tehilla is doing much better. She came off the anesthesia very nicely. She did not throw up and it did not cause her cough to worsen. 

She actually has been doing much better. I've been giving her nose drops and inhalation with saline. We are waiting to be called to go see the cardiologist. I plan to ask him to let us go home, as there isn't anything they are doing for her that I can't do at home, and there are several kids sick in the ward with bronchiolitis. 

Many people have messaged me and commented that I should relax and that the decision is a good one. 

I am extremely happy with their decision. I have absolute confidence in our cardiac team. I know fully that what they have decided is the right course of action for Tehilla. A month will go by quickly and we will be completely ready for the surgery and hospital stay when it does. 

Here's our heart warrior princess, back to her happy self:

The Decision

Dr. Golander just came to talk to us. They reviewed the numbers and images. The numbers showed that the pressures are borderline. The images showed the pulmonary arteries aren't as severely small as they thought and are borderline. They reviewed everything with Dr. Erez and came to the decision that she should get the surgery in a month. 

They reviewed her blood test results and saw that her hemoglobin did not show chronic damage. It showed that, yes, she's not doing great but it's not critical. We will continue as before. Tomorrow, they will give us a date for the surgery.

In the mean time, we are being kept in the hospital until Tehilla is better. She came in with a slight chest infection and a heart catheter can worsen it. So, they won't release her until she is better. 

Here is little sick Tehilla. She is being given oxygen to stabilize her still and I can only nurse her in little increments, as her heart rate goes way too high. Her eye is red because she kept rubbing it with her IV in. 

Catheter Done

The catheter is finished and in about 20 minutes they will wake her up. The conclusion right now is complicated and unclear. For those with a medical background: her pulmonary arteries are very small. The pressure levels came out okay, but they need to check the numbers to make sure it is an accurate depiction and not influenced by the small pulmonary arteries. They are going to study the numbers and if they are good, they will consult with Dr. Erez, to see if he is comfortable going ahead with the Glenn. 

If the numbers show that the pressure isn't good, or Dr. Erez feels the pulmonary arteries are too small, we will have to wait for surgery, until she grows and her arteries grow, as well. If that is the case, because she clearly isn't doing well, there are measures (we don't know what they are yet) they will take to help in the interim. 

We have to wait 4-5 hours for the team to meet and make some decisions. Please please pray that the pressure is fine and Dr. Erez feels her pulmonary arteries are a good enough size, so we can progress to surgery. 

Catheter now

I took her in and stayed with Tehilla until the anesthesia kicked in. I'm in the waiting area with Ron and my mother. 

Because Tehilla's cough has turned so bad, they have already mentioned that they may keep us in the hospital longer. They decided it was imperative to go ahead with the catheter, because she clearly needs surgery and they need the information. They checked her blood test results and everything was normal. 

So, now we are just waiting.  

Fasting

I didn't get any sleep last night. It was just one thing after another. Tehilla's heart catheter is in an hour. She has been fasting since 5:00am. Her cough is pretty bad. I've been giving her inhalations, and even went to the supermarket next to the hospital and bought some onions. Of course, I didn't buy a knife, so I cut it with a nail file. It's helping a bit. One nurse cracked up at me, another said, "oh, good! Onions!" They took a swab of Tehilla's nose to check. 

Her oxygen saturation has been 72-74 the entire time we have been here. It's just another indication that she needs her Glenn surgery.

The procedure takes two hours. I will update the blog, as much as I can. 

Informed and Well Cared For

Once we cleared admission, we were stopped by our cardiac geneticist. He's part of our team and is conducting research into Tehilla and HLHS. He was happy to see us, but especially Ron, who had managed to escape his blood test previously. He took us to the 3rd floor, the regular sick children's ward. 

He explained to us everything there is to know and expect with the heart catheter. All the possible adverse reactions, as well. He explained that our entire team had met this morning to discuss Tehilla's case. Tehilla has to start fasting 4 hours before the anesthesia. Her catheter is scheduled for 9:00am. She is the first one. It is being done by our cardiologist, Dr. Golander and another cardiologist, Dr. Perles. The procedure should take 2 hours. Tehilla will wake up very irritable, but we must manage to keep her calm and try to get her not to move her leg too much, since that is where the catheter is being fed through and it could cause bleeding. 

He also told us tgat usually they do the Glenn surgery 3-4 weeks after the catheter, unless they felt it was emergent.  He saw that upset me and I explained that Tehilla was clearly not doing well, and I had hoped it would be sooner. We'll see what the outcome of the catheter is. 

He examined Tehilla and then, took Ron's blood. We were given a room and then the nurse took all of our details. She weighed Tehilla, 5.050kg, and measured her height, 56cm. Then she did an EKG. During this time, Tehilla had managed to smile and coo at every nurse and doctor, so we are now the most liked and patients. Smart move, girl! 

Afterwards, the pediatrician came in to examine her. I then discovered we had been placed in a room with a baby with bronchiolitis. I told the doctor we had to be moved and the staff immediately scrambled to find is a new place, while I moved us into a waiting room. 

We are now in a room by ourselves. The doctor came to ask follow up questions and I requested that Tehilla be given inhalation for her cough. The doctor was very nice and has asked my opinion on everything. He has instructed the nurses to follow my lead for her care. 

So, we are hanging out, for now. 

Catheter Stay

Today, is Tehilla's heart catheter. It could not have come soon enough. Tehilla is showing many signs of needing the Glenn surgery. Her sweating has become extreme, her lips and eyelids are often purple. I could not be happier to be in the hospital today. 

I want to share something that happened on Shabbat.  After Tehilla was born, an announcement was made in shul (synagogue) about Tehilla and asking for people to pray for her. Since then, many people frequently stop my husband and inquire about Tehilla's health. 

Yesterday, we were all out taking a walk and we stopped at a park that only had two other families. One of the husbands rushed up to us and said, "Is this her? Is this Tehilla?" We nodded and he put his hand over her head and proceeded to give her the blessing that father's give their daughters on Friday night. When he finished, he said, visibly choked up, "I'm sorry. It's just very emotional for me." And he walked away. 

While we are here (we are getting admitted right now, but waiting on a one stinkin' paper to come in by fax), I will keep everyone updated through the blog. 

Please keep Tehilla in your prayers that this catheter show that she is ready for her surgery. Tehilla bat Shoshana. 

Soon Enough

The past few days, Tehilla has been sweating when she nurses, bottle feeds, cries and sleeps. 

I put a call in to our nurse. Sweating is a sign of heart distress. For Tehilla, it is a sign that she needs the Glenn. Most HLHS babies start to have issues like this, when they need surgery.

It's a good thing her heart catheter is on Sunday. We will see what the results are, but hopefully, they will schedule her soon for her Glenn. 

Just a smidge more...

Thank G-d (over and over again), Tehilla recovered nicely from that virus.  Those onions helped her immensely.  At one point, she was very weak and not even crying when it was time to eat. I had to "force feed" her a lot.  But she regained her strength and is back to being a super happy smiley baby with a side of teething.

Yesterday, I took her to the well-baby clinic to get weighed.  She is at 4.945!  Just a smidge off.  The scale I weighed her on, is the one that last time around I thought was off, so who knows, she could be past 5kg already.

Sunday, we go in for the heart catheter. They will be checking for the pressures inside her heart.  This will indicate whether she is ready for her Glenn surgery or not.

Respect the Onions

Last night started out very badly. Shortly after I posted the last update, Tehilla's cough got even worse and her fever returned. She couldn't keep anything down and even her diapers were not very wet.  I gave up on talking to the pediatrician and called our cardiac nurse. She called Dr. Erez, Tehilla's surgeon, and updated him.  The nurse and I discussed whether she should go to the ER.  There was a concern whether she had contracted RSV and needed oxygen.

I got off the phone and came to the realization, amidst sleep deprived tears, that there was no point in us going to the ER.  Every time that we have gone to the ER, they have not done a single thing for her.  While her cough was horrible and her lips were even purple, I did not think she needed oxygen.  I have more ways to calm her and help her at home.  If I went to the ER, I would have spent another sleepless night with a screaming, unhappy baby, who would have to endure pointless blood tests and I would spend the entire time advocating for her. The ER poses too serious of a threat for her.  Last time we went, she caught that stomach bug.

So instead, I gave her an inhalation treatment.  I, then gave her only 30cc of formula and gave her Gaviscon right away.  Gaviscon was the medication that they prescribed to us for her reflux.  It acts as a seal for the food in the stomach.  We haven't been using it on her, because she hated the taste of it and her reflux had eased up a little bit. I then moved her swing into our room, dimmed the lights and she calmed somewhat and did not throw up her food. Her cough was still very out of control.

I told the nurse all this and she agreed that it was a better plan than going to the ER. Of course, there was the precaution of if she got any worse, to go to the ER and give her a call.

My friend, Netanya, made a suggestion on the previous update: to cut an onion in half and put it next to her crib.  Under normal circumstances, I would have dismissed this immediately.  I mean, an onion, really?  But last night, I was very desperate.  I was adamant to keep Tehilla out of the ER.  So, we cut an onion in half and put it on the swing with Tehilla.

It worked.  Like, it really really worked.  Within a few minutes, her cough wasn't as strong.  We, literally, sat there watching her cough progressively stop.  It took about 30 minutes, but she stopped coughing almost entirely. And when she did cough, it would dispel quickly and she could catch her breath. And then she slept for the next hour.  I woke her to give her another 30cc of formula and held her with the onion next to me.  She went back to sleep.  We got to relax for some time and then I nursed her about half of a feeding and gave her more Gaviscon.  She slept (and so did we!) for another 4.5 hours. I put her to sleep in her stroller so she could sleep very upright. She woke up in middle of the night, and I nursed her, gave her Gaviscon.  She was very irritable and started crying. So I took her and started walking her in our living room. She started having coughing fits again.  I was so tired, that it took me some time to realize- the onion!  So, I quickly put her into her stroller, and put the onion on the stroller tray.  She stopped coughing.  I walked her around in the stroller and she finally calmed and went back to sleep.

This morning, I have kept the onion (about midday, I cut her a new onion) next to her.  She has barely coughed and has been keeping her food down nicely, with the help of the Gaviscon. So, she is safely on the mend, at home and we are all getting some more sleep.

Honestly...onions, who knew?!?

Sick Again and RSV shot

Poor Tehilla is not only teething but has a terrible cough that is in her chest. It's accompanied by a cold and last night she had a fever. She gets coughing fits and can't catch her breath. She has thrown up every meal. Now I'm making sure to feed her small amounts but more frequently. We went to see the pediatrician last night. He started her on saline inhalation treatments twice a day. He told me to update him today. 

Last night no one got any sleep. Tehilla screamed and cried the entire night. And just when I thought that we got her to sleep, she would wake up again. There was one break from 3:15-4:25 when Ron managed to get her to sleep. It was horrific. 

Despite all that, Tehilla did not have a fever this morning and after consulting the pediatrician, we took her for her RSV shot this morning. She was weighed and is now at 4.820kg. 

I may have to take Tehilla back to see the pediatrician tonight. 

I miss sleep. 

Teething and Immunizations

Tehilla has started teething, and how... If I thought I wasn't getting sleep before, well... let's just say it's bad.  I've been giving her the topical gum ointment and at times, Tylenol. I've also been nursing her somewhat on demand to comfort her.

Today, we went to the well-baby clinic to give her the next dose of the HPV vaccinations and the Rota drops. I weighed her, even though it has only been 4 days, so that I don't have to go back.  She went up to 4.785kg.  Little by little...

While undressing her, Tehilla turned blue.  The nurse became hysterical, until I told her to calm down and that it was probably because the window was open and Tehilla was naked. She closed the window, I weighed Tehilla, got her dressed and her color quickly changed to purple.  It took about 7 minutes for her color to change completely back to normal. Now, she's back to her pretty pinky self.

Almost there

Yesterday, I took Tehilla to be weighed. She is now 4.735kg and 55cm long. I had a feeling last week, and now I know, that last week's weighing was inaccurate. She is almost at her 5kg goal for her Glenn surgery!

This week, I moved Tehilla into her crib in her room. It's directly off of our room, so she maybe moved 10 feet away. Regardless, it has not been easy for me and I have not slept much. She, on the other hand, has been sleeping just fine.

Her heart catheter is about two weeks away. We've started to tell our two other kids that I will be away for two nights/3 days.  I'm starting to prepare myself mentally, as well, for being back at the hospital and seeing her in that state again.

Well, after all of the responses I got from the blog and Facebook, Picture #8 won.  I'll go to have it printed and framed, next week.

Shabbat Shalom to everyone!

Photoshoot

After repeatedly trying to schedule a photoshoot with two different photographers, I was very disappointed. I really wanted to get a beautiful shot of Tehilla that I could print and frame for our cardiologist and for our surgeon as a thank you.

So, this morning, I had a do-it-yourself moment and decided to do our own photoshoot. I'm pretty proud of myself.

But now, I need your help.  I need to decide which picture to have printed.  So, please, comment below, on which picture you think I should use.

And yes, Family, if you would like me to have one of these printed for you, I will.


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Shabbat Shalom!

Shabbat Shalom to everyone!