INWe are not more special, more unique than other people who have lost their child or want to be found very pitiful, this is just our story….
Let me just get straight to the point: my baby is dead
It is the most intense time of my life and it still feels that way.
Fighting through the daily grind, watching how everyone just “goes on”. But we also go on slowly, the pain is palpable daily and the emotions are a bit hidden away again.
Because that is the easiest thing for me to do, to hide it away, not to whine, just to carry on, but fortunately every now and then that one door opens so that I can feel it again. And those are often not the nicest moments, moments when someone has given birth, moments when someone can really “whine” about their child, moments when I only see pregnant women, babies or prams all day long and that kicks me hard down. Then I feel.
Jeppe, that was our son’s name
We went on a short holiday, southern Spain, just the two of us before that little one came.
But Jeppe thought differently, he wanted to come earlier. We gave birth to Jeppe in Malaga at 25 weeks and much too early, he was much too small, 675 grams.
The uncertainty is grueling
If you ask me now what is the hardest part of the whole period, it is the uncertainty, the fear that creeps over you without you noticing and grabs you with it.
In the entire NICU (intensive care for premature babies) only one doctor spoke English in “jip and janneke language“.
Frustrations because we did not understand each other, you did not ask the smallest questions because it was almost impossible to explain. You want the best for your child, try to get everything as good and clear as possible for yourself.
And then such a small baby, which is also your first baby, in a foreign country where you don’t speak the language, you are insecure about everything, your body, about Jeppe, about who you are, but fortunately you have never been insecure about our relationship and that immediately felt very strong!
Secretly take…?
For a month we were only allowed to put our hands through the incubator and reassure him and touch him. I found it frustrating, I had an enormous urge to secretly take him with me, under a very large coat and never let him go again. But that was not what would make him better, he needed the medical care, all those bells and whistles that hung on him, as much as I would have liked it to be different.
Jeppe had some small things in the beginning that are “normal” for a premature baby, but what is normal? For us this whole situation was not normal. You start to see a different side of yourself, never thought that we were so strong together, that I was so strong and could handle this.
Celebrating what we could celebrate
Huge survival mechanism, hardly cried, and in all the little things we saw something positive even though the day was still so shit. Was Jeppe 1 week old? We celebrated it! 5 hours off the ventilator? A snack outside the door, an ice cream as a treat, you name it. To also get away from the hospital world for a while and try to recharge the battery a little bit.
Then there was the operation…
At one point we were told that there was a small blood clot in one of his fluid chambers in his brain, which caused the circumference of his head to grow. After having done a few punctures (removing fluid from his head with a needle) with little result, they decided to operate on Jeppe. An internal drain from his fluid chamber to his organs was placed. He was just under a kilo and they had never done this operation on such a small baby (which they fortunately only told us afterwards). Then came the point that I wanted to call a helpline and through a colleague of mine we got a telephone number of the head of the NICU department at the UMC Erasmus hospital in Rotterdam. We had explained to him everything that the doctors here in Spain had told us. The one from the UMC was able to reassure us and told us that they would do the same.
The day that Jeppe was operated on was quite chaotic, in the Netherlands they would plan such an operation. Here we were called that morning to ask if we could come to the hospital as soon as possible because it could be that they would operate on Jeppe today and we had to sign papers for that. I think I aged a few years in those hours that we had to wait during the operation, powerless, nerve-racking, because you can’t do anything at all, and I remember that I was just making jokes to Mike in the waiting room because I couldn’t act.
- But fortunately everything went well,
- the internal drain was in and now it was a matter of waiting for the coming weeks to see if his organs could process the fluid from his brain,
- with the breast milk he was getting, at the same time. So wait and have a lot, a lot of patience.
Finally the first skin-to-skin contact
But this worry was gone for a moment because I was allowed to do the most beautiful thing you could wish for when you have just given birth to your baby. One day after his operation I was finally allowed to kangaroo Jeppe (also called pouching, the nurse places your baby with his belly on your chest)! Finally I was allowed to feel his skin on mine, feel his heartbeat, smell him, stroke him and hold him very close to me. This is really the most beautiful and rewarding feeling there is! And with a huge grin on my face I sat there with Jeppe and a mega proud father next to me! It is indescribable what kind of feeling this gives you, now that I am typing this I am sitting there with tears in my eyes again and I get a painful, nervous feeling on my chest. I sat like this for hours, felt his little movements, heard him breathe, felt his eyelashes against my skin. So special to finally experience this and also so bizarre after sitting next to him for a month, looking at him in a peep box and then finally being able to hold him. Very unreal, but oh so grateful.
Even in a nice bubble
Luckily all the worry went away for a while because he was doing better, all the infusions were out at one point. I still remember very well that at one point I saw his whole face! But then really without all the tubes, his real face. Very strange! But the most beautiful. Even though he still has a tube for his ventilation.
It’s strange, the whole period that there was always something wrong with him we didn’t dare say it out loud, stayed positive, even though that annoying little voice is somewhere in the back of your mind. And then Jeppe is doing well, even then you don’t dare to think it, but you keep hoping, believing that everything will be fine. And that we can take him with us to the Netherlands. I still remember that I saw a really nice rattan cot on Instagram and bought it too. A friend was so kind to pick it up. We hadn’t finished the room yet, let alone started it. That would all happen after the holiday, then we would be 26 weeks, plenty of time.
Stabbed blue by the IVs
To live in this bubble for a while that Jeppe was doing well, the bubble had already burst after a week. They saw in his blood tests that a value had risen which could mean that there was an infection somewhere.
He needed antibiotics again and therefore an IV. And then you think “just put in an IV”, but that is not easy with a premature baby. They were busy with it for a total of 2 days. The first day they were busy for 3 hours, but it did not work. Then in the evening in an operating room with certain light, but it did not work either. The next day they went into surgery anyway, the first one in his neck, they could not find a good vein there but eventually they did in his groin. You are not allowed to be there, which is logical, but that waiting is killing you, you can’t do anything, they do not let you know and it feels like it takes hours before they are done with him. Everything is so inaccessible while it is happening so close by.
What makes it difficult is that you never know how you will find your baby, because it can change at any moment.
Jeppe got a thrombosis from the drip in his leg. Thick, blue, another drip in his arm for medication for the thrombosis. It is difficult to see him like this, he was very angry then, saw that he was crying (we could not hear Jeppe, because of all the tubes he had in his airways) and you cannot pick him up, cannot comfort him, which made it difficult because you cannot express your motherly feelings or at least not in this area.
A strong team
But then there was Mike who said, let’s focus on what is going well, that the medication works, thrombosis is resolved and that Jeppe clears up his infection. And that’s how it was every time, did Mike not feel up to it one time? Then I was there to help him get back on his feet and vice versa.
I have thought many times to run away, away from all this, and “just” start over. Anxious, insecure, you don’t want this. I felt a little panic come over me. And of course, you don’t do it. But it is the fear that suddenly dominates and you don’t know what to do anymore.
The doctors’ concerns
At one point we had many conversations with Jeppe’s attending physician, Dr. Elias, they don’t know how Jeppe would come out of this. He will be a very special and unique little boy. Unique. But they couldn’t tell us how hard it would be, that will only become apparent as Jeppe gets older. What doctors do in the NICU is not tell the parents how worried they are, they only tell them when their worries have gone away and then they tell the parents what was going on but that it is now stable. We had now agreed with Dr. Elias that he would tell us everything about Jeppe. They were very worried at this moment. Dr. Elias occasionally came by in the evening in his free time to see how Jeppe was doing. Waiting and hoping and enjoying this little man as much as possible.
The room…
When you walk down the hall towards the NICU, there is a room, the family room, where no good news is told. We saw parents and families there, twice during the time we were there, who had lost their baby. When we arrived at the NICU one day, we immediately ran into Dr. Elias in the hall and he took us to that room. It screams through your body, several voices go through your head because what is he going to tell you? Jeppe does not look well today, he has several complications. We notice that Dr. Elias wants to know from us how far he can go.
- When do you go against nature? How will Jeppe be later if they continue?
- Doctor Elias indicates that he can continue and continue and continue, but to what extent is it healthy?
- And what do we want for Jeppe? What we both know is that we do not want Jeppe to become a hothouse plant and we knew,
- because of his hydrocephalus, that Jeppe would already become a special little man.
- But a special little man from whom you can see that he is happy and has a human life.
The best for your child
We want the best for Jeppe and that is difficult. Because what is best? Fortunately, this decision is not up to us but to the doctors here. Tears in abundance after this conversation. No idea anymore what I felt and thought. Emotions that shoot in all directions. Positive? Yes still, that keeps you going. If we start thinking negatively now, we will end up in a quicksand of negativity that is almost impossible to get out of and we can do nothing with that.
I sit with Jeppe, exhausted, stroking his forehead and humming nursery rhymes to him. Tears are streaming down my cheeks, I don’t want this, not these conversations. Jeppe has surprised us before and then the next day everything was fine again, maybe this time too.
Words we didn’t want to hear…
After less than two days we were back in that room, again with doctor Elias about Jeppe. Jeppe is doing really badly, everyone is fighting day and night for Jeppe to get him better. They are now at the point of going against nature, but they would rather not do this. Not for the baby, not for the nurse, not for the doctors and not for the parents either. They want to stop treating Jeppe. Boom.
The word is out. Shit. Now what?
The pages of my book are now completely empty, I haven’t written anything down. Everything is rushing by. They’re going to prepare a corner for us in the NICU. With Jeppe. If we want to wait here in the family room.
- It sounds very strange, but somewhere deep inside, we were at peace with it.
- Mike and I had had this conversation several times. Even though this is news you never want to hear.
- And we know that the hospital Materno Infantil in Málaga did everything, absolutely everything to make Jeppe better.
- We had complete confidence in doctor Elias, he was a fighter, dared to take risks, cares a lot about his patients and the parents.
The farewell in Malaga
They came to get us, we were allowed to enter the NICU through another door, there were 2 chairs ready and the incubator with Jeppe in it. Very strange, but I happened to have brought the polaroid camera, no idea why on that day of all days.
I don’t remember who was the first to hold Jeppe, but this was the first time we held him like a “normal” baby. With his head on the inside of my arms and his bottom in my hands. I felt his sweet hair, his cheeks, lips, hands, feet, I smelled everything, wanted to remember the smell. Jeppe was very calm, he still had 1 drip where they put something in, I think to put him to sleep.
- A smile, a little yawn, his eyes still open for a moment, a little pinch from him, crying, kissing, comforting each other, rocking him, stroking those chubby cheeks. Everything and everyone disappears around you, the three of us in a bubble.
- That’s how it should have been, at home on the couch, enjoying him in our arms, being able to comfort him, stroke him, kiss him whenever we want.
- I’m glad we can experience this together. That Jeppe wasn’t alone, that we both held him, that we could still give him comforting words, that we can say that we love him, that he’s a tough guy and a fighter. He wasn’t alone, he was with us.
That day Mike and I sat outside the hospital for hours. I couldn’t leave, I didn’t know what to do. Jeppe was still in the hospital and I couldn’t leave him. For months this was your rhythm, every day the same and now nothing. We kept waiting until the morgue came to pick him up.
Final goodbyes in the Netherlands
In the end we took Jeppe to the Netherlands to give him a worthy farewell.
It was intensely beautiful, an incredible number of people were there to support us. We both said something during his funeral. No funeral car, but a Fiat500 oldtimer with Jeppe in the coffin on the back of the seat so that we could make the last round together in Breda, where we sometimes went for a beer, where we liked to be, where grandma lives, no coffee table but tapas and wine and we released 56 balloons at the cemetery of the days he had lived.
The sun shone that day and it continued to shine for months in the Netherlands.
Mike and I had agreed to do all the first times together, to the bakery together, to the first (children’s) party together, to the greengrocer together, with the idea that we would experience it together for the first time again and be able to tell together what happened and how we felt.
Now already a year later…
I think it wasn’t until the end of November that I really came out of my survival mode, the jealousy suddenly came out.
They have something that we don’t have. Your hormones, your emotions, the realization that every house has its cross and that this cross weighs equally for everyone, even if it can be such a small concern. Your street, your work, everything is the same as before, but you are completely different. You think differently, you have been formed, you have learned, you have encountered yourself. A rollercoaster of emotions, of laughing, crying, anger, I felt like a pinball machine where the ball bounced in all directions. I got tired of it, but fortunately with a lot of talking, writing and choosing things that give you energy we came a long way.
We are doing well, emotions will come when they come, I am still talking. Dare to look to the future again, have completed a trajectory at the Erasmus UMC and are picking up our things again.
We didn’t sit in a corner and waste away, of course, crying is allowed, but the next day we try to get our shoulders under it again.
When we look back at this year, we don’t regret anything, not the choices we made, not how we arranged the funeral, not how we deal with it. We are both different people and deal with it in our own way. We respect each other’s feelings and give each other space in that.
My heart feels empty, incomplete…
It is difficult to describe, but it feels very tight on my chest, a pain, heartache my mother says.
Jeppe will always have a special place in our hearts and will always be part of our lives. I have learned so much from this period, from him and from each other. And no matter how unreal and how difficult it sometimes still is, I would not have missed this for anything.
NB This is the story of Sanne and Michael. This blog was created with great care and with their approval and the accompanying photos were published. By writing down their story, it helps them a little in the processing of the great loss of their son Jeppe.