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.