Dear Pien, big sister of Guus,
For almost three years you have been alone with your daddy and me. It was good to be with the three of us, but we all thought it would be great to have a little brother or sister for you. I started to grow a big belly and every now and then you would go with me to the midwife to listen to the little heart of your brother or sister. You really wanted a little sister; you made clear that a brother was definitely not what you hoped for. So the moment we told you that you were about to have a little brother, you got really angry. So angry, that you told us you would go and live with Lynn (a friend), because you would then have a sister at last!
Finally the time had come. I went to the hospital and granny Cuijk came to Eefde to stay with you. Together we had something to eat and then I left with daddy to the hospital. I think granny was the most nervous of us all! At 7.30 PM your little brother Guus was born after a fairly easy delivery. Guus was even a little smaller than you when you were born. He weighed 2740 grams and was about 47 cms tall. But everything seemed all right. We named him Guus Joseph Nevenzel, the second name after Grandpa Jo who had died just one year before.
The next morning you and granny immediately came to visit us. You were so proud of your beautiful little brother! You already could have him on your lap and how proud you looked and how sweet you were to him. Guus and I stayed in the hospital for another night, and daddy came home with you and granny. The next day you all came to pick me up. It felt good to go home with the four of us and with granny. The maternity care lady, Corrie, was there too and she also enjoyed playing and singing with you.
The next day, however, Corrie did worry a little about Guus. He did not drink enough, he was not able to keep himself sufficiently warm and he looked pale. That night I also worried and I decided to call the midwife. She thought that Guus was not a very lively baby and advised us to go back to the hospital. Neighbour Wim came to look after you, although you were fast asleep and didn’t notice his presence at all.
The fist days in the hospital in Zutphen it seemed that Guus had an infection and we hoped he would be able to go home with us within a coupe of days. Because I had just been in labor and was still breastfeeding, I stayed with him in the hospital. You stayed home with daddy and you came every day to check up on your little brother and me. But Guus didn’t get better at all. They continued to do all sorts of examinations on him in order to find out why he was eating badly and why he also needed oxygen. He was on the monitor and had many tubes in his little hand, foot and nose. That was to give him his medicines and to feed him. Sometimes he even had a little facemask to help him breathing. How sad he looked! And like this it wasn’t possible to cuddle him or to feed him with the bottle.
After the doctors took a picture of Guus for the second time, they wanted him to go to the hospital in Nijmegen. He had a rotated intestine (malrotation volvolus), which urgently had to be operated. Guus was picked up with a babylance (an ambulance especially for babies) and transferred to Nijmegen. It was a big shock for daddy when I called him to tell that Guus had to go to Nijmegen. He quickly collected the most important stuff for us all and Guus and picked you up at the day care. That must have been odd for you! We then brought you to granny, as she lives really close to Nijmegen. Daddy and I then hurried to the Radboud hospital to see how your little brother was doing.
When we arrived a doctor had already examined him. Apparently he did not have the very acute rotated intestine, but had to be operated the next day. He was on the neonatology department, High Care. In this department were a lot of baby’s that had been born too early. Some of them weighed even less than a kilo. Therefore, the doctors sometimes called Guus superman because he was so big. This was a relatively calm period for us and I was happy to have the opportunity to spend some time with you. Because we stayed with your granny in Cuijk, it was easy for us to drive to Guus in the hospital and back.
Two days later Guus had an operation on his rotated intestine (malrotation). During the operations they also found a problem with his urethra, which they also operated right away. The operation was a tense time for all of us, but everything went well and now the getting-better could finally start! I was already thinking that we would be able to celebrate Sinterklaas with the four of us at home. The camera above Guus his hospital bed was great; this way you could look at your brother while staying with granny. And sometimes we were able to wave hands to each other.
Guus progressed with small steps and he was transferred to another hospital department. The day you came to the hospital with daddy, Guus was not doing good at all. In the afternoon the doctors made a film of his heart and it appeared to be a reason for concern. The three of us had to go to the children IC, where a lot of doctors examined your little brother. A nurse brought you some toys, but it would have been better if you wouldn’t have been present while all of this was going on. At night the three of us went to granny and we left Guus in the hospital. Very early in the morning we were called that your little brother wasn’t doing well and that he was put on artificial respiration, as he was not able to breathe well enough anymore. Luckily you could still stay with granny.
In the days that followed things only went worse with Guus; he didn’t manage to breathe well enough and to get sufficient oxygen. The doctors advised daddy and me to stay in the Ronald McDonald house close to the hospital, instead of staying with granny. Because things were so bad with Guus and the doctors still couldn’t find out what caused all his problems, they wanted to give his lungs some rest. He was put on the heart-lung machine (ECMO). Now, your beautiful little brother was on a giant machine with a lot of tubes. The doctors kept him asleep. The machine took over the work of his heart and lungs, so Guus would be able to rest for a while. You sang sweet songs for him and held his hand while he was on this machine.
This was also the time that Sinterklaas was in the country and of course he didn’t forget you. Especially with a brother that was so ill, Sint thought you deserved some extra presents, I think. How indulged you were during this period. And the Sint had also thought of Guus; he now had many teddies and hearts hanging at his bedside.
After a week Guus was allowed off the ECMO. The doctors thought he had had an infection and that he now had to gain strength on the children IC. Sadly, he had to have another operation on his intestines. There was a small film in his intestine that made it that he was still not able to drink by himself and therefore he was still fed by an infusion. This operation was very tense as the doctors were not sure whether Guus his lungs would still be working after the operation. In this time they also discovered that your brave little brother had a big problem with his lungs (Pulmonal Hypertensia). He was on medication that helped him in the beginning, but later the medicines didn’t help him enough anymore.
In the same week your sweet grandpa Albert died of a cerebral haemorrhage. We buried him a couple of days later, together with your grannies and uncles and aunties. What a difficult time this was, especially for daddy. It was really hard for him to be so far from his family, but of course he also wanted to be with Guus in the hospital.
The first days after the operation went well, you even gave him the bottle and you had your little brother on your lap. How proud you were! But after a week Guus had an infection. Just as he was nicely on daddy’s lap, he suddenly started feeling really bad. At that moment you were just staying with us in the Ronald McDonald house for a couple of days. I was shocked when the nurse called me to tell Guus was doing really bad and I quickly ran to the hospital with you. When we arrived at his room he already was in a big bed. They had put him asleep en put some sort of tube in his throat so he did not have to breath by himself. Uncle Mario then came to pick you up and bring you to granny.
Daddy and I were very much in doubt, but after a lot of talking with the doctors (and the doctors with each other), we decided to put Guus on the heart-lung machine one more time, to give his heart and his lungs a little rest again. Now the doctors could also take a piece of his lungs to see which problems he exactly had. During the Christmas days Guus was peacefully on the heart-lung machine and we came to celebrate Christmas with you and granny. And of course we also celebrated granny’s birthday!
A couple of days after Christmas (on December 28) daddy and I were called and told that the doctors now knew which disease Guus was suffering of and they asked us to come by. Then the doctor told us that Guus had Alveolar Capillary Dysplasia (ACD) and that he would not be able to live with this disease. Because of a little mistake in his lungs, Guus was not able to use his lungs in the right way and doctors could not change that. Daddy and I were very sad and we called both of your granny’s so they could come and say goodbye to Guus. All of your uncles and aunties and your grannies came to the hospital and said goodbye to your sweet little brother. You too gave him little kisses and caressed him over his head.
After that, everybody went home and you went with granny. Daddy and I said goodbye to Guus really quietly and peacefully. He died in daddy his arms. After that, we washed him in a bath and we put him in a little bed. He had to stay another night in the hospital and on Monday morning we took him home, in the maxi cosi in our own car. At home, daddy and I put him in his own bed in the spare room. This way we were able to look at him, sing songs for him and caress him for another week. You made him many beautiful drawings, put teddies with him in his bed and played music for him. You were so sweet to him! You did find it odd that he turned so cold. On Saturday we took Guus to Zutphen, where many people came to look at him one more time. You and Jur sang two songs for him. Finally, the three of us brought Guus to an oven and there the body of your brave little brother was burned. Guus his ashes are on the windowsill with a beautiful photograph, candles and once in a while another new present or drawing of you. You talk a lot about Guus and you are and will always be his sweet big sister.
Of course, daddy and I are sad every now and then because Guus is dead, but you don’t mind. You always say: Grown-ups cry about Guus, but not Jur and I because we have a lot of pictures of him.
And a while ago one of your friends was playing at our house (as a coincidence her name is Guusje) and you were about to make a drawing for Guus. Guusje didn’t understand, because Guus was dead, wasn’t he? But you explained to her that you could also make a drawing for a dead brother. I thought that was very sweet to hear. For you and for us, Guus is still part of our family.
A big kiss for you my dear,
From your mommy