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.