Exactly 24 years ago I immigrated from Canada to Holland. This past week I got a message through Facebook from my cousin asking me to please give an english update. When she asked I wasn't able to but today feels like the perfect day to blog in english. Sorry, my dutch readers...it's your turn to use Google Translate ;-)
I want to give a short summary of what life has been like up to this point. Obviously focussing on Nienke and my roll as her mom. Herman and I have been blessed with 4 kids. They are the best thing that ever happened to me. They mean the world to me. All 4 were born healthy. With Nienke though I always felt there was something different. She grew normally, hit all her milestones perfectly on time or even early so there really was no reason to worry but my gut feeling told me something was wrong. When she was 2,5 years old she started gaining weight. Not just a little bit but alot and extremely fast. Within 6 months she went from being full of energy to being an overweight little girl hardly moving. Just wanting to sit all day. We went to the dr and ended up in the ER but nobody knew what was going on. All we got was a whole list of symptoms we had never even noticed ourselves. A bunch of specialists got involved but nobody had any answers….After 8 months (June 2018) Nienke got really sick. While she was napping on my lap she stopped breathing. I woke her and she was fine. She fell asleep and stopped breathing again. I texted her neurlogist and she told us to come in immediately. That night I googled the terms hypothalamus and breathing issues and the first thing that popped up was ROHHAD. We had been searching for 8 months but as soon as I read the symtoms I knew this was it. Reading that and realizing my little girl had this terrible disease broke my heart. But through it all God has been comforting me and teaching me things I would have never learned without going through all of this. Would I want her to be healthy? Yes, definitely!! Would I want to miss the lessons? No, never!!
He has taught me to trust Him regardless of the circumstances. He has taught me to live one day at a time. One of the hardest lessons was that He has taught me to let go and let God. I have prayed the "serenity prayer" so often. Especially the last 6 months.
June 2018 Nienke needed to start nighttime ventilation. She stabilized, or so we thought. November 2018 she got really sick again. After testing the doctors told us she needed a tracheostomy. This is a tube in your neck through which they could ventilate her during the daytime. They were willing to plan surgery the following week. I couldn't believe this was happening. Quality of life for Nienke has always been extremely important to me. I want to let her live her life like any other child as much as possible. Being on a ventilator 24/7 did not fit into that picture at all. If that was the only thing possible, yes but not before I checked all other options.
I remember the night following that "talk" very clearly. Once again I was on Google looking for other options and I found one. In the US there is a young man with the same condition who has a diaphragm pacemaker. He is doing pretty well considering the condition he has. The next day I talked to Nienke's team. I was really excited but that is obviously no guarantee that her team would be just as excited. And even if they were…..could we make this happen?! They were not excited but definitely interested to know more. This all happened a year and a half ago!
6 months ago, just before Christmas Nienke had an incident at home during the night where her oxygen dropped to 40% despite the ventilator. I took her to the hospital, got some labwork done and expected to be able to leave with some adjustments in her meds or fluids. But, the doctor told me that if I wanted to take her home I needed to sign some papers because they wanted her to stay. That was an easy choice. Had I known back then that 6 months later we would still be there I would not have packed and unpacked my bags as relaxed as I did. I really thought we would be home soon.
They monitored Nienke over the holidays and we found out that her oxygen would drop and rise without any known cause. Her ventilator works perfectly fine but her body doesn''t react normally. At that time we alreay had had the diaphragm operation postponed once. It was planned again for the end of January. Then, they moved it to Feb 26th. That ended up being cancelled without a promise for a new date. We were devastated but there was no way I was going to give up now! In Groningen where she was to be operated a doctor was fighting for us as well. She moved mountains we didn't even know existed. That this operation got planned a third time is nothing less than a miracle.
May 19th was the big day. All went so well!! She started pacing 24/7 three days after the operation. After a week her breathing was normal. I had my little girl back to being herself. So talkative, sparkling eyes, rozy cheeks...she enjoyed walking around the hospital. She got emotional that she wasn't as tired as before. This lasted for three whole days...We were transferred back to Utrecht 10 days after her surgery and the moment we got back to Utrecht it was like a switch flipped. All her levels went back to where they were before. She was not feeling well at all. Now, after being back for a full week she still isn't doing great. I do have faith that the pacers will work for her but I need to be patient. They worked before so they will work again.
Thank you so much for your prayers! They mean so much to me! Please continue to keep us in your prayers. Please pray for wisdom for her doctors. For the nurses that care for her at night. Please pray for our family and especially for Nienke. God has shown her He cares and she loves Him in such a pure manner. We really all need to be like children when it comes to believing and trusting God. Philippians 4 has been my "anchor passage" in the past years. When we pray and tell Him all our needs we must never forget to do this with thanksgiving. Not only for what He gives but especially for who He is.
Today someone sent me a song that has been translated into English. It was a beautiful song in Dutch but English has always been my go-to language for music. I hope you enjoy and please join in to praise Him for who He is: the great "I AM"