Maria joined the angels...

  ON 3RD OF JANUARY, AT 4 PM, OUR LITTLE DAUGHTER DIED IN OUR ARMS.

OUR LOVE AND THE SENSE OF OUR LIVES [*]

THE FUNERAL WAS ON SATURDAY AT 12 O'CLOCK

2012-11-17

In the end of October we visited Mr. Shafiq who again congratulated my parents twice for having such a wonderful child ;). Regarding a contact lens which was tried in my left eye (but had stayed there only a couple of hours because I had rubbed it out) he said that if I do not accept it, we will leave it with glasses. In 2 months time, during the next visit, we may try again or we may change the glasses. We’ll see...

Also in the end of October aunt Magda visited us. She spent with us almost a week. Her visit was a time of rest for us, but by no means physical ;q. We did lots of shopping and walk. As auntie came in the time of All Saints’ Day, according to local tradition, we gathered as many children as we could and we went on Halloween knocking on the nearby doors shouting “trick or treat?”. We were dressed fantastically, of course. I was a very sweet pumpkin :q.

Last week I was very moody. My parents couldn’t believe that I cried so often.  Most likely all of this was because of teeth. Dad noticed that the other upper first tooth has come out. It’s high time! Moreover, I caught a minor cold. But mum and dad suspect that my moodiness may be simply because I understand more and more every day, and maybe I am checking what can be achieved by crying ;). They also try to make me fat, but without a success. I eat poorly. Once I may eat more, but then I will not accept anything for a couple of hours and I will close my mouth firmly. Maybe it is partly because of the teeth, but my parents are worried. However, I am such a little sweet “Thumbelina”, aren’t I?

In the beginning of this week 2 therapists visited us. One will stimulate my vision and the other is for early education, so I suppose we will play a looot. We are going to start in December.

We are still looking for a private physiotherapy. Bobath would be the best. Although the method was created in the UK, we cannot find any therapists. And it is very important for us because physiotherapy that I have now is once a week and it is only sitting and playing. I like Ms. Liz very much, but this kind of physiotherapy and once a week only is really not enough. I am 22-months-old and I neither sit, nor even start to crawl...

2012-11-16

So many months have passed since I have written/translated my daughter’s last post that I do not know what to start with…

It would take me a lot of time to translate everything and I think there is no point because no one would like to get through it…

So in a very short summary…

In the beginning of August 2011 doctors suggested tracheotomy as a chance to get out of respirator and maybe even going home, and we eventually agreed. Thus on 10^th of August it was made.

Taking out the intubation tube made it also possible to teach Maria of normal eating, but it was a very difficult and long process…

However, what happened next was something we dreamed about for a very long time.

At the end of August first trials were made to take our little daughter off the ventilator. Initially she was on CPAP. The first day when she was on her own breath since she was born was on 6^th of September. However, she needed some oxygen (and she still does), but it did not matter. An unbelievable day came when after 8 months spent on intensive care wards Maria was transferred to a “normal” one.

Then, at last, on 21^st of October we went home. After 8,5 months spent in hospitals we were able to put our little treasure in a bed that waited for a very long time…

At home we fought with eating and we were losing our hope after 2 months, but on Christmas Eve 2011 Maria gave us a most precious gift – she started to eat normally. The feeding tube was taken out by mistake by us, but we decided not to put it again and she managed.

Winter passed and we had not gone back to the hospital even once, though we were told we were expected to be coming back very often. Spring also was moving fast, so we started looking for ways of taking out tracheotomy tube, because we considered it was needed no more. However we could not find any doctor in Gdansk that would help us. Eventually we found a doctor in the South of Poland in Rabka-Zdroj that was able to undertake such a thing. We went there and on 7^th of May the tube was taken out…

And now the entirely new chapter.

On 19^th of July 2012, after many weeks of preparation we have moved to the United Kingdom. We settled in this country in Northern England, in Darlington. We rented a house, found a job and we want to spend here a couple of years.

Our daughter has already been seen by a lot of specialist, mainly in Newcastle. Respiratory doctor said that the lungs are not so bad… Cardiologist confirmed that the heart condition is very serious, but he has done a couple of successful operations of  this kind of heart defect. Nevertheless, it never is one surgery but maybe 6-8… However, the decision whether the surgery will be undertaken or not has not been made yet. What worries the doctors most is that our daughter is so small. Some genetic examinations have to be done to check whether she do not have some rare syndrome that would influence her life and possible surgery.

Eye doctor – Mr. Shafiq – is very positive and he said that he is happy that Maria sees something with the left eye (the right is gone…). She was given beautiful glasses which help her for her short sightedness.

And so we are moving forward… At the moment we are looking for more physiotherapy, as we reckon 1 hour a week not enough. And we would gladly find some Bobath therapist… We also fight with oxygen, but Maria is so addicted to it that is not able to be without it. Now she is on 0.5 litre/minute whish is not much, but still not “0”.

We also fight with feeding her, but this goes very slowly, especially recently, maybe due to the teeth which are coming out all the time…

2011-07-31

It’s the second day I am without antibiotics. Today I slept all day. In the evening I started to cry as my belly ached. My parents made a massage of my little stomach and it helped – before they went home I had fallen asleep again.

2011-07-30

Last days passed peacefully, so there is nothing to write about. On Thursday doctor decreased the pressure on respirator of 1 mmH2O more. She said that if I don’t learn to eat until I have tracheotomy they will make me a PEG (Percutaneous endoscopic gastrostomy in which a tube is passed into a patient's stomach through the abdominal wall) so that I will be able to eat through a tube. Mum said they will not agree and showed her how eagerly I suck a dummy. The doctor said it’s an easy reflex and I have to practice nevertheless of fear of anything that comes to my mouth. Yesterday clinical speech therapist called my mum and told her to make a massage of my tongue and palate. But it will be difficult as due to constant 5-month intubation I have a gouge in it. It hurts me when it’s touched. I hope it will heal. But still it’s amazing that so many people care about me and want to help me. Together with my parents we are very grateful

2011-07-27

Last two days were peaceful. Yesterday aunt Kate visited me. I am learning to suck. The best place to do it is in the arms of my mum. One nurse that was long absent, was shocked that I am so big when she saw me after coming back. I grow so quickly that there are some clothes that I haven’t wear yet and they are already too small. In the morning when mammy came I turned my head to the other side so that she had to help me with the tube.

2011-07-25

Yesterday Emily’s mother came to the hospital. Emily is a 2 years-old girl with tracheotomy due to the “Ondine’s Curse” (www.emilkowo.pl). My mammy spoke with her mother before about feeding children on respirator. She brought two dummies for me, so that I will be able to learn eating. The doctor said that we can start to learn sucking. She put her finger in my mouth and said that my tongue works so there is a chance that I will learn to eat normally. Yesterday I tried with my father’s finger and dummy, but it will take time as I always have eaten only through a probe. What is more everything that comes near my mouth frightens me because of often intubations. Today I slept all day. The nurses say that I am an utterly different child when my parents are absent. I feel safe with them. I weigh 3840g. Yesterday I was wearing my pink dress for the first time. I looked like a little princess. But my parents forgot to take the camera.