Thursday, December 9, 2010

December to Remember - 1yr after 1st OHS

Yes, the first surgery was exactly 1 year ago!
December 9th is definitely one of the important dates in Abi's life. I remember that day clearly, even though I do not go back there too often.
Let me share a piece of Abi's story I wrote for the book "Matters of The Heart' vol2 that is to be published next year, to celebrate Abi's 1st sucessful open heart surgery!

July 24th, 2009. A beautiful miracle baby girl was born. Her name was Abigail Maja. Who would have thought she had a serious heart condition by just looking at her? Despite her diagnosis, she reached high scores in Apgar scale and was the healthiest and biggest baby in NICU in Charlotte, where she spent first 3 days of her life. Even though, I wasn't able to hold my baby in my arms right away, it was comforting to see her being so healthy and discharged to go home within 72h. She was not showing any symptoms of her complex little heart, so diligently studied for months before her birth. After, what appeared a bumpy road though pregnancy filled with nearly 20 ultrasounds and echoes; amniocentesis and hearing progressively worse diagnosis, we were finally able to enjoy her at home for nearly 3,5 months. Abi was closely monitored by Dr Greene, who had been able to identify all the defects and to lead us through the process, until we noticed her poor eating habits and rapid breathing. We brought it up at our monthly cardiologist visit. We kept a very detailed feeding log for the first few months of her life, so we could tell she wasn't taking enough and was burning too many calories. She would barely eat half of what she was supposed to eat and was breathing between 65-80 breaths a minute (normal respiratory rate for infants is 40-60). After consulting Abi's condition with the cardio thoracic surgeon in Atlanta, the decision was made - Abi was scheduled to have a Pulmonary Artery (PA) Band procedure in early December.

On December 6th, after we saw my mom off at the airport, we began our trip to Atlanta. We spent the night at our friends’ house and early morning on December 7th, we registered at Sibley’s Children’s Hospital in Atlanta, GA for the pre-op. It took 7 hours before we were able to leave the hospital. As soon as we put Abi down, we got a phone call from the surgeon. We were told that the cardio thoracic surgeons, pediatric cardiologists and pediatricians got together to discuss Abi’s pre-op results and they all agreed that PA band would only get things worse and it was not an option in this situation. Instead of going into the surgery, the very next morning Abi got admitted to the hospital and had her catheterization (cath) done. The procedure took about 4 hours.

After the cath all the doctors got together again and then talked to us about, what they believed was the best option. According to the doctors, the best next move was to perform the open heart surgery called double-switch. It was a very difficult decision for us to make in such a short time. We knew we should let the surgeon fix her heart, as the valve was leaking heavily, so we told the doctors to proceed with the plans and schedule the double-switch surgery (originally planned for much later or never) for the early morning.

Abi slept through the day and most of the night after being sedated for the cath procedure. She woke up before 5am hungry and thirsty. She could only have clear liquids to drink, so she drank 5oz of cherry flavored pedialyte provided by the nurses. She would normally drink 2-3 oz at the time, so we knew she was super hungry.

The nurses came with some sedatives that Art gave Abi around 6 am. She started to calm down and got sleepy. She slept for an hour in my arms before we carried her to the surgical area and let the anesthesiologists take her from us. It was one of the hardest moments in our lives, as we didn’t know if we would see her alive again.

The surgery lasted 9 hours. The most difficult 9 hours in our lives. Even though we heard from the Operating Room (OR) every hour, anything we heard wasn’t enough for us. At one point during the surgery a surgical nurse came from the OR to talk to us. She told us that everything was going according to the plan and explained that the reporting person stands literally a couple feet from the operating table, so when they call to update the parents, they have to be quiet and provide brief information. She also flipped her name tag with a prayer to Jesus on the back and said that the surgeon was a tool in God’s hands and all the people involved were believers and felt God’s presence in the room. It was a confirmation of words we had been receiving that day from others. We appreciated that personal gesture and even though it was still difficult, we gained an incredible peace from this moment on.

Once the surgery was finished, dr. Kirshbom came to talk to us. He said the surgery went very well and if he could have planned the best outcome this would be it. Abi did great, but due to the swelling of her heart, resulted from the extensive and complex surgery, he was not able to close her up. Her chest was left open with a plan to close it maybe in 2-3 days. 45 minutes later we were able to go to Cardiac Intensive Care Unit (CICU) and see our little girl. Abi was hooked up to so many machines, wires, monitors, chest tubes and was so swollen we could barely recognize her. We were prepared to see this, though. I admit, it is a shocking view to see if you have never seen babies after heart surgeries. It was extremely hard to see her like this. But she made it and was doing great. We were so proud of her!

In fact, she was doing so great they closed up her chest the next afternoon (not in 2 days as planned). 2 days later, on Friday they pulled out 2 chest tubes, one IV line and on Saturday took her off of oxygen, to move her to the step-down unit on Monday morning. Abi was doing so well, recovering so quickly the doctors were saying they were really amazed, especially since we were told to expect the recovery time, in the best case scenario, to take 2-3 weeks. The staff at the hospital was wonderful, but we still had to fight for her fights that she couldn’t take on her own. We knew our little girl better than anybody else, so there were situations when we had to stand up for her and tell the staff to adjust some of their expectations or routines, because it wouldn’t work nor benefit our little girl. And we were right... We were correct about her sats (blood saturation) when we told them to take the nasal cannula off, since the oxygen was turned off anyway. They were not sure about it, claiming it was not affecting her breathing and since the oxygen was off it should not really matter. The problem was that when Abi was falling asleep the nasal cannula was partially blocking her nostrils, therefore breathing was more difficult for her (babies are nose-breathers, not mouth-breathers) and her sats were dropping overnight. Let me mention that every single time the saturation dropped down to a certain limit, the monitor would go off and beep until manually snoozed or when the oxygen level went up. And it would go up and down a few times within, as little as, 15 minutes. That translates to no sleep! Finally we told the technician we were taking the cannula out and once we did that, Abi had fantastic sats and slept great (so did we). We faced a similar situation with the feeding (NG) tube. They put the tube in and let us feed Abi with a bottle, saying that if she didn’t eat enough, she would have to go home with the NG tube. We really wanted to avoid that and we finally noticed that the NG tube was irritating her and she did not really want to suck on the bottle. We told the nurse to take the tube out and that we would feed Abi on our schedule, as at home, not as they would want her to eat and that changed everything. She started sleeping much better, her sats were great and she started eating better than ever before. Abi was 4 months at the time and even though we knew her reactions, likes and dislikes, it was extremely difficult in this new situation to enforce what we thought was right and better for our child. The parents are the ultimate decision-makers and they should question and even take charge in situations when they feel uncomfortable or something is happening against their instincts.

Abigail was discharged on December 16th, 2009, 7 days after her double-switch surgery. When they told us in the morning we would be going home in the afternoon, we couldn’t believe it. Being able to spend Abi’s first Christmas at home was the best Christmas gift ever!

And here's Abi today, enjoying activities at her start-smart pre-school:

Abi's trick:

Abi with a baloon:

1 comment:

  1. Such an amazing story, loved reading her story from her 1st surgery last year. She is such an amazing and strong lil girl and growing a lil more every day. Thank you 2 wonderful parents for sharing her unfortunate story with us, but in the end she was a VERY fortunate lil being. Someday, she will enjoy reading her story and how she overcame the awful odds against her being so young and having to go thru what she did. Abi, let's go for year #2!!! Keep growin lil one...you are loved by so many and are so lucky to have Asia and Art as your parents. ~SRH