Laura's Story\

Laura’s Story – Part 14 – Our new normal

The next day, Laura went back to the OR to have her chest closed and to adjust the patient outflow cannula to get a better fill on the Berlin Heart. If the Berlin Heart doesn’t fill completely, Laura’s blood pressure would drop so it is important that it fills with each beat. The hope was that they wouldn’t have to put her back on bipass but they wouldn’t be sure until they saw what they were dealing with – the swelling from the previous day’s surgery should have reduced by now, showing them exactly how the cannula was sitting in the left ventricle.

Thankfully, after about an hour in the OR, Laura was returned to the unit and there was no need to go back on bipass, they simply rotated the cannula slightly and that helped with the filling problems – the pump was still rather positional (meaning that it had to be kept at a certain angle to fill completely) but it was a bit more reasonable now. We would just make sure that a small towel stayed underneath the pump to hold it up and that would do the trick.

On Tuesday, November 2nd, 2016 Laura got a new visitor! My good friend from University came out to spend a couple of days with us. She got to experience the world of the PCICU and got to see Laura’s new heart in action – it’s quite interesting to watch. It was always nice having visitors because it helped break up the monotony of PCICU life a little bit. When it was just the two of us, we pretty well did the same thing every day.

Every day for the next week was pretty well the same. Get up. Head to the hospital – I would go straight in and A.J. would go get us coffee and meet me shortly after. Listen to the plan at rounds – mostly tweaking medications and the ventilator and trying to figure out what to do with Laura’s pesky lungs. Watch and hold Laura’s hand as her dressings were changed around her Berlin Heart Cannulae.

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Laura’s Berlin Heart Sites once they began to heal

Once all the medical stuff was out of the way, we would read stories, play with Laura in the mirror, talk to the nurses (We loved talking to the nurses – who wouldn’t? They’re fantastic, interesting and hilarious), talk to the approximately 1 million doctors and residents who would come by and then just basically, hang out. At the end of the day, we’d read Laura a story, tuck her in, and head home to sleep.

At this point I was still leaving Laura’s bedside every 3 hours to go pump so that she could still receive the benefits of breast milk. With her being so sick  breast milk was her best option for gaining her strength so that she was ready for her new heart whenever it came.

The pumping room. It was in the NICU and it was a small (10×10?) room with three chairs, three hospital grade pumps, a sink, and some cupboards to store our supplies in. There were paintings of breastfeeding mothers around the walls and so many little helpful hints for pumping posted everywhere: pump every 3 hours for 20 minutes, 8-10 times daily, this is how much you should be pumping day 1,2,3 and so on, warm compresses, quiet, music, etc. When I first started going in there I would take that one seat that was hidden by a curtain, but after a few months of this, I never drew the curtain anymore – because who cares? These are all mothers doing the same thing, it’s not as if we were staring at each others bosoms and giggling like ninnies.

It’s weird that I’m telling you about this but it does have a purpose- it was in this room that I met some of the most amazing women I have ever met. This was a space where women could escape from ICU life for 20 minutes and just hang out with other moms who understood what they were going through. I met mothers who had babies born at 22 weeks gestation at less than 1 pound, mothers clinging to hope as their baby was fighting bacterial meningitis, mothers who were trying to understand why their baby was born with their organs outside their body (gastroschisis), babies will RSV (respiratory syncitial virus), and many many mothers of babies with heart defects.

I learned about as many defects as I could – HLHS (Hypoplastic Left Heart Syndrome – missing or small left ventrical), HRHS (Hypoplastic Right Heart Syndrome – missing or small right ventricle), Tetrology of Fallot (4 defects in the heart), TGA (oh wait…I already knew that one), VSD (ventricular septal defect – a whole along the ventricle), ASD (Atrial septal defect – a whole along the atria), Truncus Arteriosis (missing the pulmonary artery and the aorta and instead only has one trunk), and so many variations of these.

Learning about heart defects gave me something to do but it also offered me some insight into what these mothers were facing. Something that I always tried to tell new mothers that came through was to remember that all of this medical jargon that was overwhelming them was actually really interesting! If you take the time to do some research and ask questions, you’d be amazed how much knowledge you can gain.

I made great friends and we rejoiced when they were discharged – because most of them were discharged before us. I met many new people and as time went on they couldn’t believe how long we had been there. There were many who were there longer than us as well – the longest stay of the people I got to know was over 450 days in hospital – a lifetime. When Laura went into cardiac arrest for the first time, the moms that had been there were quick to offer an encouraging word. I was always happy when their children improved and I was sad to hear when they took a step backwards. We helped each other along our journeys. One of the hardest things that happened during our stay was when one of the girls that had become a good friend to me lost her daughter – what a strong and amazing woman – I don’t know if I could have survived losing Laura. I have been able to get in touch with her recently and they are living life as fully as they can for the sake of their other children. She has so much strength and she is such an inspiration.

It is amazing the strength that a mother can possess. The fathers, of course, went through the pain and joy as well but for a mother it is different – not being able to properly care for your child eats away at your soul and each mother is just trying to hold on to that hope of making it home.

Being able to have other mothers who were feeling the same way was an amazing gift.

In the last weekend in November, my parents came up for a visit and were able to see the Berlin Heart in person! It was always a treat to have them come visit because unlike most of our visitors, they had a bit more insight into this world because they had been with us for that first month. It was nice to be able to explain things and know that they at least understood some of it!

We were really starting to get settled into our new normal when we hit another snag – we still couldn’t get Laura off the ventilator – time to prepare for another surgery…

 

Tally: Age: 2.5 months, Open Heart Surgeries: 5, Other surgeries: 1, other surgical procedures: 15, cardiac arrests: 3, minutes of CPR: 127, ECMO runs: 2, LVADs: 2, days in the PCICU: 68

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