“Will she be home for Christmas?” Ben had asked the doctor during rounds. The doctor looked at us with an uncertain look, and without him even saying a word, we knew he had no idea. He didn’t jump in with an answer right away, he just looked at us, with an apologetic look and said something like, “I can’t promise anything. We really don’t know”. It wasn’t an answer, but it was all he could say at that point without giving us false hope.

We’d been in the hospital with Hope for about 8 weeks. The first 4-5 in the NICU and the remaining weeks in the special care nursery. It felt like forever, and we had no certain time frame for when she would possibly be coming home with us. We were exhausted, we were holding onto that little bit of hope we still had, that Hope would be home with us soon, but nobody could tell us when. It was like all that uncertainty from the pregnancy just followed on. We thought we had been given a break when they were born, we thought we were doing well.  We knew it wasn’t going to be a short few weeks stay in hospital but, we had expected we would at least be out by their actual birth date. As this date got closer, we knew Hope was not going to be strong enough.

So what had happened? When she was born, everything seemed fine. She was off oxygen on day one, but on day two she needed it and she continued to need it. Things weren’t as “good” as they first seemed. We don’t actually remember when the issue was found, but sometime within the first week, it was discovered that Hope had an ASD (Atrial Septal Defect).  This meant there was a hole in the wall between the two upper champers of Hope’s heart. This hole increased the amount of blood that was flowing in through the lungs. If this hole didn’t close, or remained too large, it could cause damage to the heart and lungs, and potentially, if not treated correctly or in time, could lead to heart failure.

What did that mean for Hope and what did it mean for us? It meant that Hope needed to remain on oxygen in hospital until the hole closed, or looked to be closing, and the doctors had confidence that she was strong enough to survive at home. We had to wait to see whether it would fix itself, or whether intervention would be needed. It meant giving Hope multiple doses of medication and watching to see what it did, and then being disappointed each time to see there was no improvement, and sometimes even see the hole become larger. It meant once again, we were praying for our little girl to pull through, for her heart to hold up, and we were relying on doctors to get their timing right. If they waited too long to make a move, it could be fatal, if they moved too soon…. it could be fatal.

I just want to add here that we understand there are families that go through so much worse. Hope’s heart complication, while dangerous, was common. In most cases, they did close up themselves, but Hope was 8 weeks premature, had already been fighting in the womb with her placenta flow issues, she was smaller than she should have been with the addition of having Down syndrome, there were so many things going against her. We were scared. We did our best to be brave, especially when we were home with Lincoln, but we didn’t want to lose her after everything we had all been through.

So, while Hope had remained in hospital for all that time, Alexander had been able to come home at five weeks. It was great to have him home, but it did complicate things that little bit more. Now there was a baby to get ready, to feed, to change and prepare a day bag for before we were able to get to the hospital to see Hope. It meant the exhaustion hit another level, especially for myself. I was now staying awake longer during the night, having to either feed Alexander, express milk or both. I know that’s a normal thing for new mothers but it was tricky when I was unable to get much rest at all during the day. We also had so much going through our minds with worrying about Hope that neither Ben or I probably slept much at all. Ben did help with night feeds for Alexander but I still had to wake up either way. I made a decision during this time that I was just going to exclusively express for both Hope and Alexander. While it would have been nice to have breastfed at least one of my three children, it just had become such a juggle trying to get the timing right to make sure Hope had what she needed at the hospital and Alexander was also getting what he needed. Honestly, life at this time wasn’t easy, but we made it work because we had to. We had to do it for Hope. We had to do it for Alexander. We had to do it for the family.

After multiple unsuccessful attempts of closing the ASD with medication, Hope began to be seen by a specialist who came from the Children’s Hospital. She would come in weekly and do an ultrasound to check the heart and the lungs. Most weeks, it was the same. No change. But we continued to try to wean her off the oxygen in the hopes that she was getting stronger and her hole would eventually close itself. Just like we had seen with her placenta flow issues, Hope was always unpredictable. At one point, everything looked to be heading in the right direction. She had been off oxygen for a couple of days and she was looking strong. The doctors and nurses were all confident that Hope’s heart was finally doing what it was supposed to do at birth, and the hole was closing. Some of the nurses were saying their goodbyes expecting that we wouldn’t be there when they returned for their next shift 3 or 4 days later. All we needed was for the specialist to give us the all clear. The specialist came. She did the scan, and she said. “She needs to go back on oxygen”. Those were not the words we were longing for. Not only was she going back on oxygen, she was going to need it 4 times stronger than it had been previously. Without the oxygen, she was working too hard, her lung pressures were extremely high (which isn’t a good thing) and without the oxygen, there was risk of heart failure. Ben and I were devastated. It was 3rd October. Hope had been in for 8 1/2 weeks. Who knew how many more we’d be there?

A few days earlier, on their due date, Ben had posted this to Facebook:

“Hope, I’m so excited to show you that you do have a home outside of those 4 walls, there is a sun that shines bright for you, not just lights on the roof, there can be silence without the constant beating of the heart monitor, there is a family waiting for you, not just nurses and doctors. You have a very comfortable cot, not just a plastic container for a bed. There is a whole life waiting for you, you just don’t know it yet.“

We wanted to take her home so badly, but once again, we also knew hospital was where she needed to be, so we continued the trips in every day, we battled the exhaustion, and we would do it for as long as we needed to.

It was probably the day after we had seen the specialist, that we asked the doctor whether Hope would make it home for Christmas. So here’s some good news. HOPE MADE IT HOME FOR CHRISTMAS! She remained on a high rate of oxygen for a week or so, and then we weaned her off again. On the 17th of October, Hope was discharged, however, she was not completely out of the woods yet. There was still a hole that possibly needed surgery to close, but looked like perhaps it had finally started closing itself. We needed to come back the following week for another scan and to make future plans. When we went back the following week, it wasn’t great news. The hole had not closed further, from memory, it may have gotten bigger again. We were told by the nurses that generally, if it was that bad and we were still a patient, there’s no way they would send us home.  Because we had already been discharged, they would allow us to go home again, but we had to arrange to take Hope to Westmead for continued monitoring. It was there, the discussions of operations began.

Once again, in regards to Hope’s heart condition, I just want to say that while scary, and potentially life threatening, there are much worse things out there. I know there are babies that are getting open heart surgery within hours of being born. There’s children that have multiple heart surgeries within their first few years of life. I cannot imagine living through that. But, while what we had with Hope may not have been as high risk as some other heart defects, it was still terrifying. The risks were still there.  There was still that thought that if something went wrong, it could end terribly. I think if it wasn’t for our 2 boys, Ben and I would have dealt with everything very differently. I think there would have been many more tears, many more sleepness nights, and it would have been difficult to focus on anything but the negatives. (Even for someone like me, who generally looks for the positives in every situation). Our boys brought the joy that was often hard to find through all the exhaustion and worry. Knowing that we had 2 happy and healthy boys at home, made us fight harder for Hope. They made us believe and pray more, so that we could be a family all together separated by hospital walls.