The Story of “A” (Part 4)

Finally home with “A”

Despite the urgent nature of her hospitalization, “A” only had to spend a few days in Montreal before we could bring her home. Happily, her oxygen issues worked themselves out and her coloring and breathing got back to normal. Nonetheless, once home, we woke up frequently to listen for her heartbeat and breathing.

And yet, what I remember the most about those early months with baby “A” is how relatively normal our lives seemed. People came to visit, kids went to school, and grocery shopping was done. One of my sisters-in-law came for several hours a day and that helped enormously leading up to the surgery. In a strange portent of things to come, I also remember a very large bottle of hand sanitizer that we stationed right next to the front door. We asked visitors to use it before holding “A” because we were concerned that her immune system wasn’t very strong.

Other than specific care for our little girl, life went on as it had before. We played with the kids, cleaned the cat boxes, home-schooled our oldest, hung out with friends, and lived.

Sure, in the back of our minds, there was the reality of the impending heart surgery…but it sort of took a backseat to living in the moment.

Sucks when they are right

Despite hoping for the contrary, it was apparent from the start that breastfeeding would not be an option because “A” couldn’t latch on. And though I got over it quickly for her sake, having to bottle feed her was a bit of a blow for my “breastfeeding mommy” ego. However, I happily learned that one of the nice things about using a bottle was that everyone could participate in feeding her. I have lots of pictures of my husband or one of the kids with “A” perched on a pillow. In almost all cases she is drinking her milk and listening intently to whatever they seem to be saying to her.

However, to fill those bottles and hold onto the possibility of eventually breastfeeding her, I became a “pumper”. After some failed attempts with store-purchased pumps, we discovered an “industrial” version for rent from the local health center. It was the size of a large toaster and had legs and wheels.

And so I pumped…all of the time. This allowed me to feed her with my milk, freeze milk, and, of course, maintain my dwindling supply. I developed an incredible empathy for milk cows. And, sadly for me, when it became clear that there just wasn’t enough of my milk to go around we supplemented with an organic formula. So the little bit that I was able to pump would either get frozen or given to “A” as a small meal. It was hard because I felt like I was getting further and further away from the possibility of breastfeeding my daughter. However, I soldiered on and continued to pump. Sure it felt like another ego blow, but I just kept reminding myself that it wasn’t about me.

Not all easy

Despite lots of wonderful family time, there was a constant undercurrent of stress regarding the goal of getting “A” to 10 pounds. So we spent a lot of time counting how many milliliters of formula she drank daily. Though she never seemed sick, she did tire easily and drinking seemed to be a lot of work for her. For this reason, the nutritionist continued to urge us to insert a feeding tube because it would put the food directly into her stomach and require less energy on her part. She also kept pushing the meat baby food. We had no desire to put her in danger, but we stuck to our guns because somehow we knew that she was getting what she needed. And though we never wavered, we began to understand why many parents opted for the feeding tube. The meat, however, was still a big no!

Go time!

When “A” was about 5 months we got the call for her surgery date. It would be in a week! Not a lot of time to worry and just enough time to prepare. We didn’t want to commute but we lived 1 1/2 hours from the hospital. Happily, some dear friends offered us a place to stay that was fairly close.

The day before surgery we confirmed the cat sitter, packed for us and the kids, and headed to our friend’s house. One of the things we had been told was to bring a good quantity of whatever food our daughter had been eating/drinking. This way her first meal after surgery would be something she was used to. So I grabbed the 3 bags of hard-earned breast milk stored in the freezer and the container of organic formula.

The waiting is the worst part

The things that I remember the most from the surgery were the waiting room and the waiting. The room was square and white with uncomfortable chairs, a television, and lots of other worried parents, relatives, etc. The minute I walked in I could feel the fear, nervousness, and anticipation that was in the room with us. Nobody was talking so it was strangely quiet for a space that had so many people. And despite the presence of the television, everyone seemed to be staring ahead at nothing. My husband was with our kids and was planning to come after the surgery was over, so all I could do was wait until I had news. Now and again a nurse or doctor would come, call someone’s name, and they would exit the room…never to be seen again.

And the result is…

After what felt like an eternity, it was my turn. The doctor(ironically the same one who had talked to us during the “decision” period) called me from the doorway to join her in the hallway. Those 12 or so feet were the longest I have ever walked.

Thankfully, she and her assistant immediately told me that “A” had done extremely well during the surgery. Cue a long-overdue intake of air. The surgery had been a bit longer because it turned out that she had 3 holes, not just the two. Two in the heart and a third where the umbilical cord had connected during pregnancy but never closed after birth. She went on to say that the holes were big enough that the surgical team could see them without using the magnifying glasses.

Turned out she was sicker than anyone thought. Considering the size of the holes, the doctor was amazed that she had stayed healthy this long. It was at this moment that I remembered that early on someone had told us that this surgery would happen before she was a year because babies in this situation usually didn’t live until they were a year old.

But now, the doctor happily pointed out, “A” was going to be one very happy baby.

She looked so little

When they finally took us to see her she was in this enormous incubator of sorts with tubes sticking out of her chest. It was very disturbing. The nurses explained that the tubes were for removing urine and excess secretions as well as giving her IV fluids. To this point, there was an enormous bag of pee next to her bed. Everyone was extremely excited about how much pee she was making because it meant that her body was strong enough to flush all of this stuff out of her system. We could do little more than look at her and talk to her because she was still under the anesthesia. The plan was to feed her when she woke up.

Because she was attached to so many things, the nurses gave “A” her first meal. When I showed up shortly after they asked me for more bags of milk. More? Didn’t they know how long those took to fill? She had drunk all of them in one meal! She had never eaten that much in one sitting. First tons of pee and now a huge appetite. All good signs for a good recovery.

Already?

A mere 4 days after her surgery she was discharged. I kept asking them if they were sure she shouldn’t stay longer. She looked great but it just seemed so quick. The doctor and nurses assured us that she was ready and would be better off at home with her family. And except for the 4-inch vertical scar in the middle of her chest, you wouldn’t know that anything was ever wrong. So home we went.

First things first

As soon as we were home it was clear that “A” was more energetic and hungry. So the first order of business was figuring out breastfeeding situation.

A dear friend told me about Domperidone. Jokingly referred to as Dom Perignon, it was originally created for treating acid reflux. However, during trials, they noticed some men began lactating. Happily, it had minimal side effects for all involved. So two friends who worked with La Leche League helped me work on her latch and eventually, we got it. The Dom initially increased my milk supply but once “A” started really drinking I didn’t even need it. Suddenly being a cow for 5 months didn’t seem so bad.

The new normal

The memories of those first few weeks at home with “A” have blended in with all of the others. There had been such anticipation with regards to the surgery and now it was over. In fact, the only photo we have of her surgical site was taken 3 weeks later when the scars were almost healed.

There were several follow-up appointments but eventually, those became annual events. The doctor explained that often children, who have operations very young, need another surgery at 9 or so years old. This was never the case for “A”. It was as if, after the surgery, she took off running and never looked back.

Now, that skinny baby with tiny feet is 13 and a firecracker. Fully embracing the teen experience much to our annoyance…and secret joy. Her heart check-ups are now every two years and each time we see her cardiologist he is all smiles and happy words. Usually ending our appointments with the phrase, “Go away! I have sick kids to care for.” Serves both as a reminder of reality and equally of the wonderful place that “A” is in. While listening to her heart during the most recent appointment, he said, “If I didn’t know her history I would never know that she ever had a heart problem.”

Feels like a success story to me.

Even more so it shows how strong this girl is and always has been.