I just read my last english update and realised that if that is where you all think we still are...Boy, do I have good news!!!
It's been 4 months since the diaphragm pacemaker operation and it has proved to be an excellent treatment for Nienke's breathing problems.
Let me sketch a picture of what life looked like for her and us without the pacemaker. A healthy person does not have to think about breathing. That is regulated automatically by our brain. With Nienke it's totally different. She would hold her breath for long periods of time, even turn blue, but just keep going. Her brain wouldn't tell her she needed to breathe. During the daytime she would breathe barely enough to stay conciouss. At night she wouldn't breathe at all. I always could tell when she wasn't doing well because she would react in slow-motion. She walked around but seemed to always be dragging her body around. Slumped over and absolutely no energy for extra movement besides what was necessary to get from point A to point B.
I remember a specific day when we went to the beach. Nienke was 3 years old and we were in the water with her. I asked her if she dared to put her nose in the water....Just to get her to feel more confident when water would splash in her face. She looked at me and put her head under water. I expected her to do that for 2 seconds but she didn't lift her head. I was holding her and lifted her up myself. I expected her to gasp for air, happy I had pulled her out but she just looked at me. All proud she had just done what I had asked and more.... I said: "Nienke, after a while you need to raise your head!!" "Why?" she asked. "Well, to breathe" "Why?" She asked again....I remember a red flag in my head. A huge one....My gut feeling that something was wrong got fed by these incidents.
Every day we spend at least an hour in the car. That hour was always pretty scary. So many kids tend to fall asleep after a busy day at school. And so would Nienke. I had to come up with tricks to keep her awake in the car. We started with chewing gum. This didn't work. Then I would give her something to eat that was crispy(chips etc.) or chewy(candy). Like any other kid would, Nienke caught on to that and wanted to eat snacks in the car daily so that was no longer an option. Then we let her go on a screen during the ride. She never falls asleep while on the iPad. She has given us a few scares in the car by just dozing off and than we would have to get her on the ventilator ASAP. This has led to dangerous situations because that means parking the car in any random available spot and getting her nose mask on her face to keep her breathing.
Being the mom of this beautiful child that forgets to breathe is sometimes terrifying...Now let me tell you what life looks like now that she has her Diaphragm pacemaker. I have to say, since she has gotten her diaphragm pacemaker it's been quite alot less terrifying. I'm not as afraid of losing her in case I don't catch that nap she might sneak in during the day. We have no idea how much she will keep breathing if she falls asleep without her ventilator but she'll probably breathe enough to stay alive.
Right now, Nienke sleeps at night with the diaphragm pacemaker and her ventilator. The two work together as a team. The pacemaker pulses and the ventilator follows with some air. We are hoping that in the future she can wean off of the ventilator and sleep like any other child. We are planning on testing this in the next few weeks.
Her quality of life has improved immensly. Instead of only planning playdates with me really close she can now go on playdates alone. This is probably the most important one for Nienke. She let me be a "helicopter-mom" because she knew it was necessary but now we are both so glad I can take a step back and give her a healthy amount of space.
Before the operation Nienke would move when necessary. Now, she runs, skips, dances around the house. She is learning how to ride a bike which in the Netherlands is a must! When she was 3 she could bike but when she got sick she lost the ability to bike. Her balance was awful for more than a year and obviously biking if you don't breathe properly is not an option.
Before the operation Nienke had to sleep in the hospital every night. She slept in the hospital in Utrecht for a total of 190 nights waiting for her operation! It was not safe to keep her home because her oxygen levels would drop to 10%-20% at night for no reason. At least not one we could find and solve. Sometimes it would be at 30%-40% for an hour. Her Co2 would rise to the 80's. Now, after the operation we have her home every night. Her oxygen levels drop almost every night to around 50% but only for a few seconds. Every night (since june 2018) we have a nurse in our living room watching her with a puls-oximeter and a camera. When necessary they go to her and give her her meds and help her if she needs anything. The nurses have been such a great help to us. Because they are watching Nienke we can sleep at night. If they need me they just ring an alarm and I'll be there really quick.
Not only is her breathing much better at night but her sleep has also improved immensly. She would often be awake for hours each night. Wide awake and not able to sleep at all no matter what. She would often go to school with as little as 5 hours sleep at night. She would have awful dreams with yelling and screaming. On one occasion she got up and dove off the back end of her bed....Within seconds she went from sound asleep to lying on the floor. Now she sleeps at least 10 hours per night. Sometimes more. She still has an occasional dream but it's not as scary. Her body is finally getting the much needed rest it needs.
Another thing that has changed is that she has become so talkative. She used to talk really softly and only when she really needed to. Nowadays I sometimes have to tell her to stop talking for a few minutes because I need to think! It's so much fun and HEEL GEZELLIG :-)
Now, with that part of the journey behind us people often ask me how I see the future. Nienke has a condition tha not only affects her breathing but so many other parts of her body as well. Her breathing problem has been solved but there are many other things I have to keep checking to keep her stable. A few weeks ago we went for a check-up to Groningen and the doctor said: "the future is bright." I really didn't know what to answer at that time but it stuck with me. Had I been avoiding thinking about the future? No. I don't believe so. I have purposely lived one day at a time. Often stopping my thoughts in their tracks when they would run off to worry once again. Taking my responsibilty where necessary and giving all my worries back to God. Praying hard that He would help me leave them at His feet. Looking into the future with Romans 8:18 in mind has been my goal. Looking into the future knowing that as a believer "The best is yet to come! Praise God!"