Skipping Percentiles

Tehilla was weighed and measured today. She is up to 4.360 kg and 54 cm. She jumped up a percentile as well! She is now between the 5th and 10th percentile. 

Clean Bill

We went to see the pediatrician today. Thank G-d, she is symptom free and the doctor gave her a clean bill of health. He actually couldn't stop smiling about her overcoming this virus "normally" and without hospitalization. Of course, Tehilla also gave him some pretty darn cute smiles. 

Our little Sicky

Shabbat was spent with fever, a lot of vomiting and diahrrea. I nursed Tehilla on demand. She was extremely tired and slept a lot. I had to wake her to eat several times. She had many wet diapers, so we knew she wasn't dehydrated. When she was awake, she was quite cranky. Very few smiles from our little trooper. Her fever finally broke this afternoon. Her O2 saturation has been between 80-85. 

I called our cardiac nurse to check in. She felt that Tehilla didn't need to be seen by the cardiologist, but would update him to let him know. We have an appointment with her pediatrician for tomorrow. 

Our little heart warrior princess is fighting strong. Thank you to everyone for the thoughts and prayers. 

No ER- for now

Our pulmonoligist looked her over and said not to go to the ER, that she looks fine. We just need to make sure she stays hydrated because dehydration is extremely dangerous for her. 

Of course if anything takes a turn for the worst, we go to the ER. 

Sick

Tehilla threw up several times through the night. Now she has a fever of 38.2 and threw up again. Her saturation is good: 85. 

We are going to my son's pulmonoligist who lives in the neighborhood in 40 minutes to have her checked out. He'll decide if we should go to the ER for blood tests. 

Here's to hoping that this is just a little virus that passes quickly and we don't spend Shabbat in the ER. 

Happy 3 Months- in the ER

Yesterday, Tehilla turned 3 months old. In honor of the occasion, she had an interstage cyanosis episode, in other words: she turned blue. Yesterday, around 7:30pm, I was working on the computer, while Tehilla was swinging happily in her swing. Mechal, my 7 year old says, "Hey, look Ima! Tehilla's lips are purple."

She had been sleepy the entire day, but I hadn't made much of it. I took her oxygen saturation level and she was at 68 and her temperature was at 37.6. Calls to the cardiac nurse, to the doctors and surgeons...it turns out no one was in the hospital, and they didn't want me just hanging out in the ER, and having the problems that we've had in the past.  They told me to wait at home, until they can find someone on call or to go in, to take a look at her.  In the mean time, I should feed her and wait a half an hour, then take her saturation and temperature again and of course, look and see if her color is still off.

45 minutes later, her lips were still purple, her saturation was at 66, but her temperature was at 37.2. They wanted us to come in to the ER and they found one of the pediatric cardiovascular surgeons that was in the hospital to come and check on her.

I have to say this, for all the complaining I have done on previous visits to the ER- we had none of those problems.  The doctors and nurses were on top of everything, handled everything efficiently and were cautious and caring. 

Tehilla's face was very purple/blue when we got to the ER.  They checked her and her color in her face returned very quickly, but her lips were still purple.  Her saturation was back to normal at 82 and her temperature was at 37.3. They also weighed her and she went up again: 4.400 kg!

They called a cardiologist immediately, who requested standard blood tests, as well as the blood gases test.  He also wanted an EKG done and wanted us kept overnight for observation of her saturation. The surgeon came and looked her over and agreed with the cardiologist about observation for the night. At this point it was already 11 o'clock at night, and she was cranky from being off schedule.  This concerned them, and they could not get the EKG to read correctly.  After they kicked everyone out and let me have time to calm her down and feed her, they were able to do the EKG again. They put us in a proper room, all the way at the back of the ER, to keep us away from other patients. We went to sleep- well, Tehilla did. I don't know how much sleep I got. Her saturation remained normal throughout the night, but her lips remained purple and her color was off.

In the morning, her O2 saturation was between 69-73 and she was checked again by the pediatrician and I was told that her EKG results were good and her blood tests came back very good. They were waiting for a cardiologist to come and check on her again.

Her saturation started to return to normal and occasionally go too high- all the way to 91. They came to do an EKG again. It was time to give her the Losec (Prevacid) that she takes for reflux, but the ER didn't have any.  While I was discussing with the nurse what to do, Tehilla threw up all over me.

We waited several hours for our cardiologist, Dr. Golander to check on her. When he finally came to check on us, he said, "Wow, you look horrible.  What's wrong with your face?"  Don't worry, I still love him.  In fact, I had been in the same clothes, and my contacts for 36 hours, now with the embellishment of throw up.  I was in a good place mentally, that's for sure.

I explained to him about what had gone on.  The big question now, was whether to move up her Glenn surgery. These interstage episodes are "normal" for HLHS interstage, but that doesn't make them any less dangerous. Each one of them has to be checked out.  As Dr. Golander put it, "Better to have a sleepless night in the ER, than to lose your child." While talking with him, Tehilla started crying and her face was blue.  Because her saturation was fluctuating so much between being too low to too high, it is an indication that she is not ready for the Glenn surgery, and it would not be successful. Dr. Golander decided to move her heart catheter up.  We have it scheduled for January 26th.  We go in the day before for blood tests, stay the night and do the heart catheter the next day, and then spend the night.  So 3 days in the hospital. The heart catheter will measure the pressure of blood flow in her heart and give them an indication of how ready she is for the Glenn.

He also took the time to explain to me that pulse oximeters can not be depended on for reading very low (low 70s and 60s) oxygen saturation.  That they are build for the normal human and Tehilla is abnormal. He was full of compliments today.

Dr. Golander acted very wounded that Tehilla is no longer happy when he picks her up. I told him, "Dr. Golander, she has discovered a world of swings, toys and a warm home.  You've got to up your game."

I also discussed with him her reflux.  Tehilla had already been on Zantac and now on the Losec, without any real relief.  She still usually throws up once a day and gags constantly.  He is starting her on Gaviscon, as well as her Losec.

So 15 1/2 hours, 3 EKGs and a blood test later, we were finally released. Thank G-d, she is okay and we (yes, me too) have been napping all day. 

Happy 3 months to us! (This kid has got to learn how to throw a proper party.)

Nothing New

RSV Shot- Take 2

Today, Tehilla went for her second RSV shot. Once again it has made her sleepy, even though that's not a regular side effect. 

She was weighed and went up again: 4.060 kg. 

Electricity

We had electricity, thank G-d.

Snowstorm

We are in middle of a snowstorm in Israel. The country isn't equipped for snow, as we only get one a year, at best. It is -1 degrees Celsius outside and is supposed to keep snowing through Shabbat. Many areas have lost electricity. We have had our electricity flicker a few times. 

For a baby like Tehilla, whose heart functionality is limited, this poses a problem. If we lose heat, her heart will have a difficult time circulating blood and maintaining warmth. 

We have bought a lot of 48 hour candles and plan on using them in ceramic pans to heat a room. As well, we will keep our gas stove on with baking sheets over and pots of water. Need be, I will keep her on my body wrapped in sweatshirts and blankets. If that doesn't do the trick, we will have to leave the neighborhood and hang out at the hospital.  G-d willing, all of it will be unnecessary and everyone will get their electricity back on. 

Clown Pictures

We just got the pictures from Lev Leytzan.  Thank you to all the clowns that brought so much happiness and clown noses into our home and to Neal for orchestrating the whole thing!

Onward and Onward

Today, we had an echo cardiogram and an appointment with Dr. Golander. When he saw her, her saturation was at 73 and he said she was a little bluish.  Ready for this? The reason is because her heart is working well.  Basically, she was put back on the Fusid, when her O2 levels were going too high. The Fusid causes more urine output which indirectly causes better circulation and was supposed to lower her O2 levels to 75-85, which is good for her.  Now that, apparently, her heart is functioning better, the Fusid is causing it to dip even lower.  So, off of the Fusid.

Last checkup, Dr. Erez had said that the plan was to have the Glenn surgery January/February time.  Now that her heart is functioning well, Dr. Golander has made a different plan. He wants us to come back for another echo in a month and a month after that to do a heart catheter. Shortly after that, she will have the Glenn surgery. He explained that now that things are going smoother, we don't NEED to do the surgery as early as possible, but rather we can do it when it is the best situation for her.  He believes that it will have a better success rate if we wait. He wants her to be 5 kg for the surgery. We are now at 3.810 kg, so it's not a far way off.

Of course, we are happy with the outcome.  A little part of me is disappointed that we won't be moving to the next surgery sooner.  I thought that next month we would be done with interstage, and all its chaos and stress.  I know that this is the best thing for her and obviously we want the best possible scenario.

So, for the next two months, we need more fat thoughts and prayers.  And of course, prayers for continued health and stability.

Percentile Hopping

Tehilla went up in weight another 200 grams! She is now 3.810kg. She also grew in height: 52cm. She jumped up on the percentile graph. Before she was less than 3%. Now she is between 3-5%. 

She also got the pneumococcal vaccine. 

Thanks, Aunty Sarah, for my Roots sweatpants!

Nothing New

Nothing new to report. Thank G-d. We have just been hanging out and baby babbling and smiling more. 

Face of Reactions

This is the face of a baby who can't stop smiling and even let out a laugh, while feverish from her vaccinations.

How's that for "quality of life", Dr. Big Nose!

Today, we went to see her pediatrician about switching her from Zantac to Lansac (known as Prevacid in the US) for her reflux. She has been on Zantac for 8 days with absolutely no change. 

Immunization Catch-Up

Today, we had another well-baby appointment. Tehilla went up another 200 grams, putting her at 3.610 kg. She also grew taller, and is 51cm long. 

We have been given the okay to begin her vaccinations and are fast tracking them. It is extremely important to now get her on track for her immunization, as it would be for any baby, but more so for a baby with HLHS. 

So, today, she got the first HBV shot, that usually is given in the hospitals, two days after birth. She also got the first DTaP + IPV + HIB, normally given at two months old. She also got the first Rota virus drops. 

Now, we just need to watch for any reactions and be in touch with our cardio nurse about anything. 

Invasion of the Clowns

Tonight, my family had the most fun that we've had in a long time. Interstage has been quite lonely. I wrote about all the precautions we have to take to limit Tehilla's exposure to germs. This means that no one other than family comes into our home. We are limited on what we can do, even with our other kids. This Chanukah vacation, we are pretty stuck at home. But tonight, my kids had an extraordinary amount of fun. 

About a week and a half ago, I received one of the quirkiest emails. It was from a guy who runs an organization of medical clowns, Lev Leytzan. He reads this blog and wanted to know if the clowns could pay our family a visit. Every year the volunteer clowns fly to Israel and visit hospitals and homes, to bring joy to sick children and their families. They team up with the Ossie Schonfeld Memorial Toy Fund, and deliver toys to the sick children and theirs siblings. 

Well, tonight there was a knock on the door. We opened it to find a clown. Then clowns just kept piling in. And then volunteers from the toy drive. I think our home was filled with about 30 people. The clowns played with all three of the kids. Laughter and shrieking could be heard, while foam clown noses were flying about for the next 40 minutes. They gave all 3 kids a present and then just as quickly as they came, they left.

We all sat down and looked at each other and just laughed. Thank you, Neal, and your incredible group of clowns! We really appreciated it!

When I get better pictures of the evening, I will upload them. For now:

House Call

On Friday, Tehilla was looking pretty pale. When I checked her O2 level, it was measuring between 73-77. I called our nurse. Her saturation itself wasn't the problem, but mixed with looking pale, can be a warning sign. 

Because nearly the entire cardiac staff was up north at some kind of conference, and it was a Friday afternoon, the doctors were hesitant to tell me to go to the ER, but no one wanted to take a chance. They were concerned, but wanted to be sure that the pulse oximeter was reading correctly. 

The solution they came up with was to find a pediatrician, cardiologist or a pulmonoligist locally to check her out, thereby avoiding the ER. A few phone calls later, and I found a pediatrician on a neighboring street. He was on his way out, so he kindly offered to come over. 

After checking her out, he said she was fine and there was no reason to go to the ER. 

So, instead, we had a nice peaceful Shabbat at home. 

Reflux

Today, we went to see Tehilla's pediatrician. Tehilla has reflux. After nearly every meal, she lets out a few coughs and then gags. Usually we blow on her face to make her swallow, but at least once a day she throws up a meal. So now, she will be taking Zantac twice a day. The pediatrician asked me, "Is she nervous a lot?" I said, "No, she's an infant."

Plumpin' Up!

Tehilla went up in weight again! She is now 3.430! Because of the steady weight gain, we will start to only check once a week.

I spoke with our nurse yesterday and explained what had happened on Shabbat. She was in disbelief that they wouldn't call cardio. She checked with Dr. Golander about the sleepiness after the RSV shot. He also had not heard of that being a side effect, but fitting with our common theme, anything is possible with this baby. 

Shabbat in the ER

This morning Tehilla was very pale, and extremely sleepy, to the point where she wouldn't wake from napping. We took her oxygen saturation and it was at 74. We tried to wake her some more and 20 minutes later her saturation was at 68.

After our nurse didn't answer, I called a friend of ours, that was one of our PICU nurses, who lives nearby. She instructed us to go to the ER. I told her that she had been sleepy on Wednesday and Thursday from the RSV shot. It turns out, the RSV shot doesn't have those kind of side effects. It was her heart.

The doctor and nurses checked her immediately and her saturation was back up to 82, exactly where it should be for Tehilla. They monitored her for a few hours with little change. During that time I repeatedly asked for them to please notify the cardiologists that we were there. 

The attending doctor and the ER doctor came to do rounds. I overheard them discussing the baby in the bed next to us who was extremely sick with RSV. When they got to us, they said that since she looked good and her saturation was still fine they were going to discharge us. This is the conversation that ensued:

Me:  You're discharging us? A cardiologist didn't even check her yet.

Doctors: She's doing fine, her saturation is fine. We're going to send you home. 

Me: No. A cardiologist has to look her over. Any time a child with HLHS comes into the ER, with low saturation, a cardiologist should examine her.

Doctors: We feel that she is okay. 

Me: This isn't a heart murmur. This is HLHS. A cardiologist has to be notified.

Doctors: They're not going to do an echocardiogram. She is doing fine now, there isn't anything more to be done. She needs to be out of here. The baby next to you has RSV.

Me: Yes, I heard that. Then move us further away from them.

Doctors: You can only catch it from touching one another. But it's better if we send you home.

Me: Look I'm not trying to be obnoxious, but you're not cardiologists. My daughter has HLHS. A cardiologist needs to be consulted.

Doctors: There is no cardiologist in the hospital right now. The best we can do is call and speak to him. But if he says that she's fine, then we will discharge her, okay?

Me: Fine. If the cardiologist says we should be discharged, then that's fine.

(Tehilla may be a heart warrior-princess, but I am becoming an advocacy queen.)

They called a cardiologist. He ordered an EKG, and asked that she remain an additional hour for observation. If everything checked out okay, then we could be discharged, unless I felt that he should see her. He would be coming in later in the evening and we could wait, but he didn't think that was necessary. I told them that if everything checked out okay, then we should be discharged. No use sticking around all the germs in the ER.

The ER doctor came to notify me that her EKG was clean. I apologized for being so pushy and she said, "No, you are doing the right thing. Even though everything is okay, you did the right thing coming in."

She asked the cardiologist about Tehilla being sleepy and he said it could be a side effect of the RSV shot. Either way we need to discuss it with our cardiologist before the next RSV shot. 

This whole episode was hard on me, in that it reiterated that no matter how much knowledge and instinct I've gathered from being a mother to my two other kids, it's all useless when it comes to Tehilla. Nothing is the same and everything is a possible danger. I spent the day beating myself up for nearly missing a sign of heart failure. Thank G-d, she is okay and we are back home now. 

Smile there!

"Smile there, ain't you glad you're living, think of all the giving you can do..."

Peek-a-boo is hysterical, and allowed me to finally capture her smile. 

The past two days, Tehilla has been sleepier and crankier from the shot. Today she is back to her normal self.

In general, Tehilla sleeps more than a regular baby. Her energy levels are low because of her heart. She is only allowed to eat for 20 minutes to not stress out her heart. G-d willing, after her next surgery, the Glenn, she will have much more normal energy levels as well as oxygen saturation levels. 

RSV shot

Tehilla has not received any of her vaccinations yet.  After her surgery she was put on many different things, one of them was a steroid, which could interfere with the vaccinations.

Today, Tehilla received a shot against RSV.  RSV is a virus that affects the respiratory tract.  Most of everyone gets the virus at some point in their life and it usually just presents itself as a cold or sinus infection.  For preterm babies or babies with a congenital heart defect, it could be extremely harmful and even fatal.  That is why Tehilla is entitled to this shot. She gets the shot once a month for 5 months.  Today was the first one. Due to the severity of Tehilla's heart defect, she will be entitled to get the round of shots every year. In the next week or so, we will be starting the rest of the vaccinations.

Before the shot, Tehilla was weighed and she went up another 80 grams!  Thank G-d! 

Going Up!

Tehilla has not been eating the formula nicely. She doesn't want to eat anything by bottle. All she wants is to nurse. Who would have thought she would be such a breast feeding advocate? We have tried to beg, plead, sing, plot and we've managed to get a little bit in here and there.

And she gained weight! She went up 175g in three days. She is now 3.140kg and 50 cm long! Thank G-d! 

Here are some pictures:

No News

No news is good news!

Shabbat Shalom from our family to all of you!

(I almost caught her smile.)

Supplementing

Tehilla dropped in weight again.  She is now 2.965 kg, having lost 35 g in 3 days.  Dr. Golander wants me to start supplementing my nursing with formula.  He wants her to take Materna Sensitive.  If she is too full after nursing, and doesn't take the formula, then I will have to start switching off feedings of nursing and formula.

Pink and Frilly

After Sunday, we have been relaxing at home. We have gotten a pulse oximeter for our home. This allows us to be able to monitor Tehilla's oxygen saturation as well as her heart rate. For now, we do not need to monitor it daily, but in the event that something comes up, we can monitor her from home, and hopefully avoid time in the ER. 

I still have not been able to capture Tehilla's elusive smile, but here are some pictures of her. 

My cousin saw to it that she is decked out in pink and frills. Thank you, Libby! 

Yesterday's ER Visit

Yesterday, was a long and exhausting day.  It started with Tehilla and I going to have her weighed at the well baby clinic.  When I got there, I saw that Tehilla's colour was not good.  She was pretty purplish.  By the time, we went in to see the nurse, she was blue.  She was breathing fine, but her face, body and fingernails were all blue.  We weighed her and she went down in weight: She was 3 kg exactly, having lost 22 g in a week. I nursed Tehilla and her colour got a little better, although she was still blue. The nurse took her other measurements and finished putting all of her details into her file, and I went ahead and called our nurse, Ifat.

We went immediately to the ER, where Dr. Golander met us.  By then, her colour was back to a purplish colour. So her blue episode was about 40 minutes long. They took her oxygen saturation which was 68.  Tehilla's normal level is low 80s.  The ER doctor looked her over.  Her saturation went back up to 81 and her colour was light purple.

Several hours later, Dr. Golander came back to look her over.  Her colour wasn't great still.  I told him about the weight loss and that I hadn't known that sweating was a sign of cardiac distress, and that Tehilla sweats a lot when she eats, from bottle or breastfeeding. He felt that over all she seemed to be doing well.  Of course, she calmed down really nicely for him, as she usually does. Then her saturation started to go up to 86-89.  That's too high for her.  So, Dr. Golander explained that he was putting her back on Fusid.  She had been on Fusid for urine output, which indirectly causes better blood circulation.  He also wanted a blood test done to rule out any infection.  He wants me to try to keep breastfeeding her for one more week and see what happens with her weight, as it is the best thing for her. As well, we were given permission to now lift her under her arms and she is allowed to play on her stomach.

The ER was unfortunately swamped, so it took several hours, before they took Tehilla's blood. She was given Fusid. Then her oxygen saturation started going up even higher, 91-95.  I notified the ER doctor.  He said that if it didn't start coming down soon, he would give her more Fusid.  Her saturation went up to 97-100.  That's extremely high for her, and shouldn't even be possible.  I told the ER doctor, he had them give her more Fusid.  I asked if he had notified any of the cardiologists of what was going on- he hadn't.  In fact, they had all assumed we had already been discharged hours ago.

I sent a text message to our nurse, telling her about the high oxygen levels.  Ifat called me, shocked that we were still there and upset that no one had let them know and in disbelief of Tehilla's oxygen levels.  One of the cardiac surgeons came to see us 5 minutes later. He didn't believe that the machine was measuring properly and had them switch her to a new machine and then left. Well, the new machine read the same exact measurements, which they blamed on her crying.  Once I had her nursing and calm, and she still had 97-100 in oxygen saturation, they finally believed it. Her blood tests came back with clean results. Calls to Dr. Golander and Dr. Erez and they felt that since other than her having high oxygen saturation, she was fine, we could be discharged.

I felt wary of being discharged, as having high oxygen saturation is a sign that there is too much oxygen going to the lungs and not enough to the body.  Which could result in her turning blue again. I voiced my concerns to the ER doctor, who sat and reinformed me of HLHS is and then gave me a speech that there was no guarantee that Tehilla wouldn't die.  (It doesn't matter how many times, I am told this, it hasn't gotten easier to hear it.)  But keeping her in the ER couldn't necessarily help either, because she might never turn blue again. Because I pushed more, he had another blood test done, where they check blood gases, and it could show signs of heart failure.  It came back clean and they discharged us.

She now gets Fusid twice a day, as well as her usual Aspirin. We were in the ER for over 12 hours.  Bless Tehilla's little heart, she slept 6 hours last night.

First of Many Parties

Today we had a Mesibat Hodaya- a party of thanks to G-d. G-d willing, we will be able to have one after each surgery. 

This is the speech that my husband gave, that I would like to share:

Thank you to all of you that came to this Mesibat Hodayah.  This is not a party for us, and not even really a party for Tehilla.  This party, really is, only about G-d.  

As all of you know, and now know, Shoshana and I, have been through quite a year.  Individually and as a couple, we have experienced life's bumpy roads- but this, this was more of an earthquake, in comparison. And it has changed our lives forever.

We were just 15 weeks into the pregnancy, when we learned that something was wrong.  And what came afterwards was a series of terrifying doctor appointments. At 17 weeks, we went to Modiin for the first of many fetal echocardiograms.  There, a cardiologist gave us the diagnosis of Hypoplastic Left Heart Syndrome.  We were briefly explained about the 3 surgeries. His words were:  you will have to make a decision. Many terminate the pregnancy and some, lift their hands up to G-d and hope for the best.  

We came home from that appointment devastated. We cried and reflected, discussed and cried some more.  My wife then went into our bedroom, sat down on her bed and called my mother to recount the appointment and explain the diagnosis. While talking, my wife noticed a large grasshopper on her pillow. She calmly told my mother, "There's a large bug on my pillow, I need to go", hung up the phone and screamed for me. 

Later that night, when we had finished updating the various family members, Shoshana and I were sitting at the table, tearfully discussing our options. She suddenly sat up, and said to me, "Why was there a grasshopper on my bed?" I looked at her and said, "What?" She said, "Why was there a grasshopper on my bed?" I said, "Sho, I have no idea. Are you okay?" 

Shoshana looked at me and said, "I'm serious. Why was there a grasshopper on my bed? We have screens on our windows and we had the apartment exterminated. Why was there a grasshopper on MY bed- on MY pillow? Right at THAT moment- after the appointment, when I was telling your mother?"  

She got up from her chair and went over to the bookshelf.  She said, "I learned that every creature we see, is there to teach us something or give us a message. I want to know what the message of the grasshopper is."  She pulled out a Perek Shira and opened to the page about the grasshopper and then she started crying.  Through sobs, she said, "The message of the grasshopper is: 

אשה עיני אל ההרים, מאין יבא עזרי"

I lift my eyes to the mountains, from where shall my help come?"

This passuk ends with:

עזרי מעם ה' עושה שמים וארץ.

My help is from G-d, maker of heaven and earth.

We both looked at each other and said something along the lines of, "Holy Cow." We determined right there, that this situation was completely out of our hands.  This was in G-d's hands and whatever happened, it was not in our control.

Of course, my wife then turned to me and said, "Oh my G-d, did you crush G-d's messenger?"

I can assure you, that story really did happen.  As unbelievable as it is.  This entire journey, thus far has been unbelievable. G-d has led us through a path with many highs and lows. But the most unbelievable thing of all, is that at my home, right now, is my little daughter, with only half a heart- alive and progressing. 

We named her Tehilla and made a deal of sorts with G-d:  It's up to you, Hashem.  If she survives, she can be a tool for you.  People will see a little girl, with only half a heart and will praise you.

That is what this party is about.  Offering thanks to G-d.  So, thank you G-d, for bringing us the right doctors and giving them the know-how.  Thank you, G-d, for keeping our baby alive.

Thank you, as well, to those that joined us in praying, that helped us fulfill our wishes of creating a Kiddush Hashem, a sanctification of G-d's name. My wife started her blog, at first to help her cope with the situation, and then, to keep our friends and family updated with Tehilla's situation.  It has had over 55,000 views and we have been told about tehillim groups happening worldwide.  This has given us so much hope and strength.

Thank you also, to my in-laws and wife's siblings, who have helped us around the clock, in more ways than I could explain.  Thank you to my mom and Avrum for helping out with the kids.  Thank you to our amazing group of friends, for providing us with so much love and support, helping us last minute with many different errands, and organizing meals for us.

With G-d's help, we will once again have a Mesibat Hodaya, after Tehilla's next surgery- and she will be able to join us.

Stitches

We had to go back to the hospital today. Yesterday, while cleaning Tehilla's scar, I saw something black sticking out of it. I thought it was some dried blood that was coming off. Once I touched it, I realized it was not blood at all.

The way that the system works, is Dr. Erez, our surgeon, has a wonderful nurse practitioner, Ifat, that we call if there is any problem with anything- whether it is getting a prescription or Tehilla not feeling well. She will then help us aquire whatever it is, or call Dr. Erez if he needs to be notified. We send her pictures of Tehilla's scar, whenever we think there's a problem. Bottom line, she is incredible and always there as medical support with a direct line to all the doctors, if needed. 

So, last night, she called me after I sent her a picture of Tehilla's scar, with my concerns and she asked, "Is that a string?" Which is exactly what it was.  Dr. Erez said it could wait until the morning, but he had to remove it. It was a stitch that couldn't be seen before, so it hadn't been removed. Now it came back to the surface. 

Here's the big 'aha' moment- this is probably why her scar swelled last week and why it hasn't been healing so nicely. It can't heal with that stitch in there. So today, Dr. Erez cut the stitch out. It caused Tehilla some pain and now she's sleeping it off in her swing. 

Nursing

Someone just got to nurse for the first time!

Good Appointments

Yesterday, Tehilla weighed in at 3.022 kg. 

Today, we had two appointments. The first was with Dr. Golander, one of the pediatric cardiologists. He did an echo cardiogram and said that everything looked good and that we were on the routine path after a Norwood surgery. 

Her ankle was looking better, however her calf was very swollen. They did another x-ray and found that it is a calcium deposit, from when she was getting TPN. It will go away on its own. 

She has been taken off of Fusid! Now, she is just on Aspirin. We really are so lucky in this respect, as many HLHS babies are sent home with a pharmacy of medications. 

As well, I've been given the green light to go ahead with nursing! She had been put on Monogan, after her lungs had collapsed. Monogan is a specially engineered formula that has the fats completely broken down. This helped reduce the fluids in her chest, so her lungs could expand. The only way to know for sure that she can eat breast milk without fluid building up again, is to try. So G-d willing, I will be nursing her and we will see what happens. We go back to see Dr. Golander in 3 weeks.

Our second appointment was with Dr. Erez, our surgeon. He was a little concerned with how her scar looked and cleaned it up, but otherwise was pleased with how she was doing. 

In about 3 months, Tehilla is to go for a CAT scan and then they will make a decision of when exactly to do her second surgery, the Glenn. The plan is to do it January/February time. 

Good appointments, big smiles!

Advocacy

It's a funny thing advocacy. How it changes you; changes your thinking. Advocacy is a buzz word amongst heart mamas. "Advocate for your heart warrior." "Be their voice."

I never thought we would have to advocate to the point, that we do. I assumed it meant firmly asking the old lady hacking up a lung, to kindly not lean over the stroller and touch my baby. Or teaching some future elementary teacher indicators for heart failure. 

No. Advocating has to now become a personality trait, second nature. It doesn't matter that it doesn't come naturally to me or my husband. It's the only way to get a pharmacist to fill a prescription, that his schooling has taught him contrary. 

It takes advocating, to the point of screaming to get a pediatric ER doctor to not lift our heart baby, under her arms, pulling at her chest.

Today, I advocated. I enraged a set of sleep deprived new parents, in the process. In Israel, they have special centers specifically for well-baby visits, check ups and vaccinations. I walked in without an appointment to have Tehilla weighed. In all fairness, they have not answered their phones for days. But I walked in, without an appointment. Seeing only two parents with small infants, I was prepared to sit and wait until they had their appointments. But then, three more parents walked in with congested, sneezing toddlers and small children and suddenly the waiting room had over ten people and became a bacteria-filled danger to Tehilla. So, I quietly went up to a nurse and explained that Tehilla was post heart surgery. 

G-d bless the kind nurse that took us seriously and disregarded the screams of the other parents. And to those parents, you were right and I'm sorry. 

But I was advocating, wearing my new raincoat of rudeness and defying social appropriateness. And I will do it again, and again. I remember being in their place, frustrated by the unjust appointment thieves and wasters of my precious time. 

So, in advance, I apologize to all those I plan on inconveniencing. I'm advocating and being a big pain in your- pumpkin. 

Fingers Crossed

Bli Ayin Ha'rah (without the evil eye), chamsah chamsah chamsah, ptttew...

We have had a few uneventful days. The swelling that had suddenly appeared has been slowly going back down. Tehilla has been less fussy. 

Something interesting that we have discovered is that unlike most babies, when Tehilla is fussy or crying hysterically, holding her does not help. In fact, she quickly calms if we just put her down, without swaddling or anything. It turns out this is fairly common with heart babies, as many of my fellow heart mamas have reassured me. More than likely it stems from not being held for the first few weeks of their life. It also, sadly, can be an association of human touch with pain, as Tehilla was primarily touched during those weeks, when they were doing something medical. It's heart-breaking (excuse the pun) to think about it, however, most of these babies get over this and later enjoy cuddling and snuggles like regular kids. 

Tehilla also loves the hospital. Both times that we were there last week, she was the calmest I have ever seen her. She even coos at the doctors. I suppose it is understandable. I just keep reminding her, "the hospital is not a way of life." 

May this week be uneventful and healthful. Thank you for all the sweet wonderful comments and messages left on this blog and on Facebook. 

ER trip

We were back in the ER tonight. Tehilla's scar had turned red and started swelling yesterday and today. 

We sent Dr. Erez the picture of her chest and he had us come to the ER. By the time, he responded, we got there and one of the surgeons saw us, the redness had gone down to light purple and they weren't as worried. They took her vitals and did a blood test. 

The blood test came back with a very slight elevation. They sent us home, but we are to come back if anything changes or gets worse. And we redo the blood test in 2 days. 

Home again.

Four Weeks Old

Tehilla is four weeks old! After Sunday's scare, we have had two great days. It has felt like "normal newborn" kind of days, with Tehilla loving her swing, playing on her playmat, and us going for nice walks with the stroller. Half a heart? Go figure. 

A-OK

Tehilla's blood work came back clean. No infection. They sent us for an x-ray of her leg to make sure it wasn't a calcium deposit- it's not. 

Her leg just has damaged tissue that will heal over time. As for her non-stop crying, it's possible that she has some pain from all her various reasons. If we see that she is crying incessantly and nothing else soothes her, give her Tylenol.

Thank G-d.

ER

We went to our appointment with the nutritionist. Tehilla went up in weight to 2.794, her birth weight. The plan is to keep going with the Monogan and Polycose. 

After the appointment, I went to see Dr. Erez's nurse, Ifat. Tehilla had cried the entire Shabbat. As well, her left foot had had an IV during surgery and had been bruised. It looked a bit red and swollen to me. Ifat sent us to see Dr. Golander, one of the cardiologists, who is also a pediatrician. He was concerned about her leg. He said it could either be damaged tissue from the IV that would eventually heal, or the skin was infected. 

So, he sent us to the ER for a blood test. We are being sent to a ward for the blood test. If it is an infection, we will be readmitted to the hospital. 

Interstage

We are now home and trying to adjust to our new way of life. We are three weeks post Norwood. Tehilla's next surgery, the Glenn, will be between age 3 and 6 months. The stage between these two surgeries is called interstage.

While the Norwood surgery essentially allows her to live and breath, it comes with its limitations. Please see the page "What is HLHS?" to understand these procedures. Her heart functionality is limited and we have to insure that she doesn't stress her heart out too much.

As well, she is immunosuppressant. Her body isn't strong enough to fight much. Even the slightest sickness can quickly turn dangerous and, G-d forbid, even fatal. 

Because of all of that, interstage can be a very difficult time. Before we left the hospital we were retrained in CPR and given instructions of what to do in various situations. We can not take her on buses or to crowded places. To limit her exposure to germs, we won't be having anyone over at our home, outside of family. It may feel extreme, but it is necessary with a medically fragile baby. 

Right now, Tehilla is on two medications: Aspirin for her heart, which she will take for the rest of her life, and Fusid, for her urine output. She also has to keep taking Monogan formula for the next month, mixed with some Polycose, to help her gain weight. 

Tomorrow, we have an appointment at the hospital with Tehilla's dietician, to make sure she has gained weight and make adjustments if necessary. 

Since we have been home, Tehilla has been getting a lot of love and attention from her brother and sister. She has also been extremely fussy. 

Our beds!

Today was a very full day and there is a lot to update about, but for now, we're all enjoying sleeping in our own beds.

We're going home!

Tehilla went up 85 grams! Her chest x-ray was clean. She just had her echo cardiogram with Dr. Golander, one of the amazing cardiologists here. After the echo, he turned to me and said,

"Well, you know, she won't be able to be a lawyer."

"Why is that?"

"She's got a good heart."

So, her Norwood surgery was successful and after 3 1/2 weeks in the hospital, Tehilla is kicking some CHD (congenital heart defect) butt.

We still have a long journey ahead of us, but for now, we're going home. 

Maybe

We may go home tomorrow. Dr. Erez wants to see that her weight goes up some more tomorrow. Tehilla will also be sent for an echo cardiogram and an X-ray. If all goes well...

In the mean time, they transferred us to a private room. It is such an improvement. In the big room we were in before, there was constant screaming children, and babies crying. This room is so nice and quiet, that as soon as we moved here, Tehilla and I both fell asleep. 

Up

Tehilla went up 10 grams! She has also been eating a lot more. Last night, she ate 70cc.

One of our pediatricians came in to see her and was very happy. He said if she kept gaining then we would be discharged. 

Dr. Erez gets the final word on everything, so we need to wait to hear what he says.

Tehilla smiles. Milestone-shmilestones...she definitely smiles. Here is a picture of her smile that I just missed.  Wouldn't you smile if you were (G-d willing) going home for the first time?

Fat Thoughts

Tehilla has been eating mostly pretty well. At most of her meals she eats between 40-50cc. Her eating is no longer a problem.

The problem we face is that she keeps losing weight. It is a normal response of the body after surgery. But until they see that her body has recouped completely and she is starting to go up in weight, we can't go home. At birth, she weighed 2.790 kg. Today, our little warrior weighed in at 2.615 kg.  The nutritionists are hard at work trying to fatten her up. 

So, please, think fat thoughts! 

Rockin' the Scar

Tehilla had her feeding tube removed! She ate 47cc at her last meal! I had stopped using the feeding tube after an incident with a nurse yesterday. I had also realized that the feeding tube would be on a drip for an hour, so by the time it was her next feeding she wasn't hungry enough. She has been moved up to 60cc a feeding and what she doesn't eat I drip into her mouth slowly with a syringe. 

Tehilla has gone down in weight, so they will be adding to her Monogan formula something with glucose to raise her calories. 

Tehilla just had her stitches removed. You can see the top of her heart warrior scar in the picture.

They have mentioned that we will probably be discharged from the hospital on Thursday!

Pretty Please

Moving to this ward was an adjustment. After a bad mishap with an inadequate nurse, I found one of the cardiologists on our team.

The only reason we are still here is because of her eating. He gave us our goal. When she is eating 50-60cc on her own without the feeding tube, then we will go home. 

Well, Tehilla heard the pleas of her mother and ate 45cc at the next feeding. The feeding after that she ate 38cc. G-d bless her.

After that, one of the pediatricians from our team came to check on her. I told him about her eating and he said, "Get her to 50cc, and you're on your way." He stayed to answer a bunch of my questions about Tehilla's care at home. 

Transferred

We were just transferred. Yes, it felt fast for me too. It feels like we just went from first class to the luggage compartment. Before Tehilla had her own room with a nurse that we sometimes shared with another room and a full staff of doctors constantly attending to her and up to 7 other patients. I had my own little room outside of the PICU with a bed, closet and night table. 

We are now in a great big communal room with 7 other patients and 2 nurses separated only by curtains. I have a pull out chair/bed, next to her.  There is no privacy and there is constant noise. We have been reunited with a "sunshine" of a child that we had the "pleasure" of meeting in the PICU. This boy spits out his medicine, pulls out his IVs and screams from dawn until dusk. Before there was a door. 

I'm going to click my heels together and remind myself it's only supposed to be for no more than a week...

And then home. 

Morning of Promise

A few of the doctors came around just now. They are planning on taking Tehilla's chest tube out today. The plan is to keep her on formula for several weeks more, to make sure the fluid doesn't come back. 

They are also talking about transferring us. Except for the two days before Tehilla's Norwood surgery, when she was in the NICU, we have been in the PICU this entire time. They would transfer us to the post-op children's ward. It is part of the step-down process. The point of sending us there is that Tehilla would still be under medical attention, but far less. I would be the primary caregiver, as opposed to in the PICU, where the nurses are the primary caregivers and I just assist. The purpose of it, is more to prepare me for going home than with anything else. It's expected, barring any complications that we would be there less than a week. 

Dr. Erez is the one who would have to sign off on us being transferred, so we'll see what he has to say. 

Nice Shabbat

Tehilla and I had a nice Shabbat, joined last minute by my brother. 

Tehilla has been eating nicely today. At her feedings, she ate 25cc, 20cc and 27cc from a 50cc bottle. She's made a lot of progress. Today we noticed a bad cut on her tongue, probably from when she was intubated. They are putting ointment on it. 

The doctors told me they plan on taking out her chest tube tomorrow morning! G-d willing, it will be a good start to hopefully a great week.

Eating Well

The fluid has almost completely stopped from Tehilla's chest, and they are discussing removing her chest tube.

She is now getting 50cc of formula and this morning she ate 20cc by mouth! Thank G-d, she is making very good progress with her feedings. 

She occasionally has a problem where her oxygen saturation dips down very low and they have to put an oxygen tube near her. 

Here she is with Ron.