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.